Nourish

Mother of the Bride

2012-01-29T08:26:00.000-05:00

Well, I have my dress for the wedding and it is ~~hideous~~ ok. It practically screams Mother of the Bride in all its beaded sparkliness. Well, Mother of the Bride or Las Vegas Showgirl. Or Mother of the Las Vegas Showgirl.

But it fits, and at this point that is all that matters.

I got it from Fat Ladies R Us and it reminds me a Bob Mackie creation. I never liked Bob Mackie. I look like Carol Burnett. Except I’m shorter, fatter, have fewer teeth and I have brown hair, not red. I guess that means actually I look nothing like Carol Burnett. I just feel like her. When I put the dress on it feels as though I should be taking questions from the audience and tugging on my ear. Sigh.

Alright, it's not this bad.

The most important thing is that Elizabeth has a wonderful day and that is all I want. The fact that I will actually have a dress on and not be sitting in the pew in my underwear will make her very happy indeed.

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The Soundtrack of Loss

2012-01-12T10:13:00.000-05:00

World War I didn’t have a number at the time it wasfought. We didn’t realize anotherhellish nightmare would engulf our little planet within the next twenty or soyears. At the time it was called theGreat War, although the only thing ‘great’ about it was the number ofcasualties. More than 8 million soldierswere killed from July 1914 to November 1918. The Armistice was officially signed the morning of November 11 of 1918, theeleventh hour of the eleventh day of the eleventh month.

The war was a slaughter, really. It decimated several countries, most notablyBritain and Germany, each of which lost nearly 15 percent of its active malepopulation. It upended long held perceptions,realigned class systems and led to a period of deep anguish and disillusionmentfor the many millions of people who had been directly affected by the horror ofthe conflict.

In rural Sussex, England, Edward Elgar, the composer, hadbeen able to hear the artillery fire in France echoing across the EnglishChannel. He was profoundly depressed bythe war and the unspeakable toll it had taken. His music until this point had been bombastic and rousing for the mostpart, but, now 61 and drawing close to the end of his career, he was moved towrite something that was rather out of character. As a tribute and an elegy, he created a celloconcerto in four movements that was haunting and melancholy. Unfortunately, its premier in 1919 was notauspicious. Never having an opportunityto catch an audience, it failed to achieve a place in popular repertoires andsoon faded into relative obscurity.

In 1965, at the age of 20, cello prodigy Jacqueline du Préchose to resurrect and record the Elgar Cello Concerto with Sir John Barbirolliand the London Symphony Orchestra. The resultingperformance was passionate and stunning and quickly developed legendary status. The Elgar Cello Concerto became one of hersignature pieces.

So a composition written to mourn a massacred generation nowbecame a best seller almost fifty years later, interpreted brilliantly by abeaming 20 year old. Jacqueline wasclassical music’s darling in the 1960’s and when she and pianist (and eventualconductor) Daniel Barenboim married in 1967 that just doubled the allure. Their careers were on stellar tracks. Itseemed there were nothing but good things ahead. Except that is not how it turned out.

When she was 26, Jacqueline began to notice a lack ofsensation in her fingers and elsewhere in her body. She continued to play, but experienced moreand more difficulty, her symptoms progressed and, emotionally fraught, herpersonal life became chaotic. She wasfinally diagnosed with multiple sclerosis. Despite attempts to defy the disease, she played her final publicconcert at the age of 28 and died of MS related causes 14 years later, when shewas just 42.

MS is a relentless thief that had no cure when Jackie wasdiagnosed in the early 1970’s and is still incurable today, almost forty yearslater. It is utterly unpredictable. Some people never experience anything more thanmild symptoms that come and go. Othershave a rapid and deadly decline. Most ofthe rest of us fall in between, with a more gradual but undeniable and grievousprogression. There is no way of tellingwho will have what development. You justhave to wait and see.

There are medicines available now that can slow theprogression down. Called diseasemodifying therapies, they all have considerable and serious side effects. And they don’t always work. If they do work for a time, it usually isonly a few years.

Because MS affects nerves, it can cause damage and malfunctionin any part of the body. Most of usexperience fatigue, numbness and burning in our limbs, severe, painful musclespasms and, eventually, considerable difficulty with ambulation. Becoming immobile is like approaching theedge of a slippery slope. Although MS isnot technically fatal, the accompanying complications – pressure sores, bladderdysfunction, breathing and swallowing problems – are the things that shortenour lives.

Then there are the other costs of multiple sclerosis. In my case it has destroyed my career as abusiness executive and, as a result, my way of life. I loved my job, I loved to travel, I was sohappy and, with my children almost grown, I looked forward to years ofproductivity and pleasure ahead. Thefuture seemed limitless.

But I can no longer take care of myself alone. I have no more independence. I cannot run to pick up a container of milkor do my own laundry or clean my home. My marvelous, charming old house, which was my dream-come-true that Ibought all on my own, is slipping out of my hands, as I can no longer affordit. My children, who already lost theirfather when they were little, have had a terrible time accepting my illness. One has gone so far as to cut me out of hislife entirely, which is the worst, most excruciating loss of them all. It is so unfair to expect them to take care oftheir mother and their own children at the same time. As a widow with no significant other, there isno other caretaker. It will not be longbefore I have to move to a care facility, as I can barely take more than a few steps anymore. With breathtaking, humiliating thoroughness,in six years I have gone from affluence to poverty, from walking to awheelchair, from health to disability.

There are, sadly, all sorts of tragedies in our world. Huge, global events like wars. Public losses of talents like Jacqueline du Pré’s. And millions of anonymous, small(in the scheme of things) losses like that of the life I used to lead. All cause grieving. And now when I think of loss, in my head, Ihear the eloquent, elegiac melody created by Edward Elgar out of his own painalmost one hundred years ago. Played byJackie in her youthful prime, conducted by Daniel Barenboim, knowing how theirstories will play out, makes this performance heartbreakingly poignant. For me, it is the soundtrack of loss.

(for e-mail readers: http://youtu.be/UUgdbqt2ON0)

Jaqueline du Pré’s birth anniversary is January 26. WQXR, the New York classical radio station,is graciously planning to honor her that day by featuring one of her prominentperformances, although as of this writing it has not been decided whichone. I am so grateful to them for givingher the recognition she deserves.

In the movie Jackie and Hilary, about the relationshipbetween Jackie and her older sister, there is a scene that absolutely captureswhat it is like every time you remember what MS has stolen from you. I include it in my annual du Pré post to helppeople understand how devastating it feels and how truly shattering it is.

(for e-mail readers: http://youtu.be/TpN41toUv-w)

I would ask all of you reading this to remember those of us,approximately half a million in the United States, who are afflicted withmultiple sclerosis and, if you are able, to support the organizations thatprovide services and fund research seeking a cure.

The National MS Society
Multiple Sclerosis Foundation
Myelin Repair Foundation

(I have also posted this entry on my MS Renegade blog)

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It's a Wrap

2012-01-03T22:18:00.000-05:00

The hideous swelling in my legs has finally been diagnosed as lymphedema – a failure of the lymph system to do its job properly. We are protected from infection by the constant movement of lymph fluid throughout our body. But when trauma or some sort of damage interferes with the process, the result is pooling of the fluid below where the impairment is. I have spinal cord damage and am increasingly immobile from MS, so my legs are the victims.

I was lucky to find a lymphedema treatment center close to my home. While doing the medical history, the physical therapist said “Ok, so which of your doctors diagnosed the lymphedema?”

Pause here for ironic laughter.

Because I am the one who diagnosed it. My PCP, whom I really do love, kept treating me with diuretics as if it were regular fluid. Can’t tell you how much fun that was, running to the bathroom every ten minutes. And that is sarcasm because of course I cannot run, I can barely stagger three feet. He was solicitous but could not give me a reason for the swelling.

My neurologist, who I used to like, the one who is supposedly an expert on MS, claimed the swelling was due to my sleep apnea. The only problem is, I don’t have sleep apnea. Although he, a man who I swear never slept with me, is convinced I do. Even though I have no symptoms and no one that I actually have slept in proximity to has ever told me that I do. But for some reason he is absolutely fixated on me going for a sleep study. Here is his subtle and gentle way of persuading me after I tearfully told him, from my wheelchair, that I am depressed, can no longer walk, have barely left the house in a year and I can’t wear shoes because my feet are so swollen:

Dr. H: You have swelling because you have sleep apnea and if you don’t go for a sleep study and treat it you are going to die.
Me: speechless with mouth hanging open
Dr. H: You need to treat your sleep apnea.
Me: But…
Dr. H: Or you’re going to die.
Me: But…
Dr. H: That’s what’s going to happen.
Me: But…
Dr. H: You’re going to die.
Me: But…

He has wanted me to go for a sleep study ever since I complained about being tired three years ago. Number one, fatigue is a primary symptom in MS. Number two, I am on a medication which has a black box warning that states it may cause you to fall asleep without warning during daily activities. Two excellent reasons for being tired. Not to mention not sleeping well because of pain in my broken shoulder. Another excellent reason for being tired. But he went straight to sleep apnea and sleep studies, dismissing the medication warning as ‘hardly ever happening’. I declined the sleep study for a myriad of reasons, mostly because I know I don’t snore, so I feel it would be a total waste of time and money.

We repeated the little scenario above several times, he gave my legs a perfunctory glance and agreed to my suggestion of actually addressing the swelling with some form of treatment. MY suggestion, not his.And I only came up with the treatment protocol and diagnosis by Googling ‘leg swelling and MS’. Lo and behold, up pops an entire clinical bulletin, sponsored by the MS Society, which outlines the connection of lymphedema to MS, describes the causes and the treatment. The treatment which, interestingly enough, does not include either diuretics or sleep studies. It is directly correlated to immobility for MS patients and, sure enough, it started as I became less and less able to walk. We are meant to be weight bearing beings and when we are sitting all the time things go wonky. Although in my case, because it is me, things go extra wonky.

So back to my PCP I went, the one who doesn’t threaten me with death. I showed him the clinical bulletin and he was totally respectful and supportive. I found a lymphedema center and set up the appointment. And I started treatment today.

A picture of my actual leg is too appalling to contemplate, so I'm treating you to this lovely drawing instead.

It is not fun. Called decongestive therapy, the key principal is compression bandaging. My left leg is now encased in thick, firm foam and wrapped tightly with elastic bandages. I have to have them re-applied daily, and wear them continuously, for four weeks. Bulky and heavy, it is incredibly uncomfortable and, because my legs are sensitive due to the MS, painful as well. But I am trying so hard to be positive, and grateful. The therapists could not be nicer and they are super enthusiastic about the outcome. I want to be on board, so I am working determinedly at being appreciative that there is a treatment available and focusing on imagining the results.

My goal: to be able to wear shoes to Elizabeth’s wedding in February.

Wish me luck!

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Just for Fun

2011-12-21T00:18:00.000-05:00

I've been fooling around with the background to reflect the winter, but I cannot get it to look the way I want and now I am too tired to play with it anymore. I'll try again tomorrow.

In the meantime, I did up a little slideshow to go along with one of my favorite holiday pieces, Do Something Nice for Your Mother by Garrison Keillor. It never fails to make me laugh.

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Changing Times

2011-12-07T04:11:00.001-05:00

As I become more and more dependent on my wheelchair and more housebound because my car is not outfitted for it, I find I have adjusted my objectives.

Dream Car then:

Dream Car now:

I am not close to owning either one, but I can dream. :) Or ask Santa.

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My Baby's Birthday

2011-11-28T18:24:00.001-05:00

On today’s date in 1987, I received the final one of the four greatest gifts of my life. Our sweet Elizabeth was born at home on Saturday, November 28.

I was playing a card game with Jamie, then nine, when I realized I was in labor. It was around one in the afternoon. I was a week overdue as usual, and believed I had plenty of time. So I started straightening up, because my parents were coming over, my mother to stay for the birth and my father to subsequently high tail it out of there. God forbid he be exposed to a body function (he ended up killing time at the nearby mall and came home with a tiny teddy bear with sparkly pink fur for the new baby when he found out it was a girl). The boys (Ryan was ten) went down the street to play at a neighbor’s. Mary Kate was two and was going to go to my friend Louise’s until the baby was born.

I called Dennis’ office. He was a tugboat captain but the boat was in the yard for maintenance. Even though they weren’t at sea at the time, in those days before cell phones, it was still tough to get a hold of the guys on the boat. You had to call the dispatcher, they relayed the message and then whoever you needed to talk to would call you back as soon as they could get free. I wasn’t worried though, I knew I had hours. When he called me back about a half hour later, I told him things had started but there was no rush. So he went back to work.

I picked up toys, finished the dishes and was mopping the kitchen floor when I felt a pop and water gushed down my legs. Uh oh. I was a week overdue, this was my fourth baby, my water had just broken and I had just told my husband, who was three hours away, there was no hurry. This was not good.

I called my midwife who headed up. I called Louise who rushed over, finished mopping the floor (only the best of friends will do these things for you) and collected Mary Kate. Meanwhile I called Dennis back at work. The dispatcher droned he wasn’t sure where he was or if he could get him the message right away or… “I’M HAVING A BABY! FIND HIM!” I shrieked into the phone. He called back within five minutes and was on his way.

By now it was four o’clock. The contractions were coming hard and fast. And I was determined not to have this baby until its father was home.

Fianlly it was just me, Bianca, my midwife, and my mother in our quiet house. I sat as still as I could on the family room sofa, willing my labor to be slow, while Bianca and my mother sat knitting and chatting.Dennis burst through the door at 7 o’clock after a three hour trek from the far side of Brooklyn through a nightmare of traffic. I got up, changed into a nightgown, climbed into bed and had the baby at 7:25.

We were so happy it was another girl!! Bianca handed Dennis the scalpel to cut the cord and he handed it to my mother. “I cut the last one, now you can have a turn.” he said. She was so pleased. Now both of them are gone, which is incredibly sad.

The kids came filtering back along with family and friends to admire the new baby. And our life began as a family of six instead of five.

As I have said before, the happiest moments in my life have been because of my children. And Elizabeth has been no exception. She has a sweet, sensitive disposition and has always been a champion of the underdog, which makes me very proud of her. She was born with a hole in her heart, which was repaired when she was six, but her heart is her strongest attribute. We are lucky to have her.

Happy birthday, Elizabeth.

Elizabeth and her fiance Matt

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Thankful

2011-11-25T18:55:00.001-05:00

I almost never do things half way, which is a polite way to say I usually am obsessive about any task I begin.

Last weekend a friend on Facebook mentioned she had just watched an episode of the television show Hoarders. I rarely watch TV, but I have seen snippets of this series online and I have found it terrifying and tragic to see the out of control lives of the individuals profiled.

I couldn’t imagine anything more upsetting than watching this show. So, being me, I pulled up the website and I proceeded to watch 15 episodes consecutively. Fifteen hours, over a day and a half, of filth, roaches, mice, ceiling high garbage and fractured families. I felt like I needed a shower after each one. Because of my immobility, I cannot keep my bedroom the way I used to, which was pristine and orderly. I kept looking around my presently cluttered space repeating “I am not a hoarder. I am not a hoarder. I am not a hoarder.”

Right. The truth is, I could be in a heartbeat.

I reluctantly recognize I am inordinately attached to many of my belongings. I apply sentimental value to things I probably should have thrown out years ago, mostly items that are associated with my children and their early childhood, which was one of the happiest times of my life. Or things from my own childhood. My mother saved nothing from when I was little, so years ago I went on Ebay and bought some of the things that had meant the most to me, Sleeping Beauty paper dolls, Miss Cookie’s Kitchen Colorforms, the Little Red Spinning Wheel. I don’t do anything with these things. I rarely even look at them. I just like knowing I have them. I take after my grandmother, who always had an immaculate and neat home, but kept many, many things that others would have long disposed of. In their nineties, my grandparents were moving in with my aunt. One of the things discovered in cleaning out their apartment was the deed to the grave of my grandfather’s little sister, who had died in 1909. Everyone was shaking their head at the folly. I could totally relate.

I am also a fabric junkie and my craft room is overflowing, but I do utilize those things, I don’t just collect them. While I feel defensive and do have a lot of things and I do have a hard time letting go of them, I take comfort in the fact that no one will discover long dead cats buried under four feet of debris in my living room.

Anyway, inspired by my obsessive Hoarders marathon, I have begun to purge my bedroom of unnecessary items, the biggest offender being clothes that no longer fit me. In the past I would have had a great deal of difficulty with that, which would account for the fact I have about 100 t-shirts in varying sizes that I have accumulated over the years. I have kept them because they are great for pairing with shorts or sweats and then going walking. But I can’t walk anymore. And many of them are over 20 years old, so discolored and stretched out they aren’t even suitable for rags. I am very proud of the fact I am throwing them out.

But then I came to my shoes. I have never been a huge shoe person, certainly never on the par of, say, an Imelda Marcos. But I have always liked good, comfortable, high quality shoes and I have about 40 pairs all together. Practical shoes. Shoes that are pretty and maybe a little unusual. As a true aging hippie, I love all my Birkenstocks.

My shoes are an eclectic bunch, chosen depending on the occasion and the statement I want to make. Sturdy and professional for work, fun and funky for play.

This past July, my legs and feet suddenly swelled up like the Michelin Man. This has happened a few times before since I got sick, but they have always gone back to normal within a few days. Only this time they have stayed that way. Buckets of Lasix, hours of pumping away on a little foot cycle, keeping my feet elevated and daily, panting struggles with getting compression stockings on have made no impact. My left foot especially looks as though someone stuck an air hose in it and pumped just short of the skin bursting off. And my doctors cannot offer any reason for this horrifying development.

In my own research I have found that this is a common problem in people with spinal cord damage, which I have a significant amount of due to MS. So all those aforementioned shoes? They no longer fit on my feet. And when I manage to squeeze on a pair, the swelling oozes out and over the edges of the shoe, creating the ever so attractive image of marshmallow leaking out of a hot s’more.

Here’s the thing: I don’t want to throw out my shoes. It is a very real stumbling block in my organizing project. What’s worse is, I am experiencing a terrible, weepy bout of self-pity. I look at each pair and remember. They represent the life I had. Here are the ones I wore to the interview for my first job as a department director.

These are the ones I bought for my oldest son’s engagement party.

Then the ones for his wedding. I actually danced in these. I could still dance then.

The ones I bought for a special date. The relationship didn’t last, but the memories are fond.

And here are my walking shoes for the walks I can no longer take.

It is Thanksgiving week and with all that I am losing and have lost I am struggling with finding much gratitude. Grasping at straws, I finally decide I have to be grateful I still have feet. I am not being facetious. They are swollen and uncomfortable and pretty much useless, but they are still there, so it could be worse. I also do not have a house crawling with vermin or a pile of clutter we need to make paths through and that blocks windows and doors. And I never will, thank you Hoarders. I also have many people in my life who care about me and for me, and I will be eternally grateful for all of them.

So I give thanks for feet and floor space and light and air and a relatively clean house and friends and the one pair of shoes I can still get on. I’m not throwing out my shoes yet, because I still have some shreds of hope that things might change. And I am grateful for that little bit of hope as well.

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Killing a Fly With a Cannon School of Thought

2011-11-22T01:53:00.001-05:00

Bambi and friends visit UC Davis:

Thank Christ those dimwits didn't kill anyone.

For e-mail readers: http://youtu.be/9GXtQfXBAmM

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Priorities

2011-11-10T11:56:00.000-05:00

This is a football.

This is a little boy.

Guess which has more value in the United States?

An American football coach says he witnessed a little boy being raped in 2002 in the locker room at Penn State University. Yet, incredibly, he neither stopped the assault nor reported it to the police. He reported it instead to his footballish superiors. Who also did nothing.

Even if nothing really happened, even if there were doubts, these men were morally and legally obligated to report this suspected crime. But yesterday in State College, Pennsylvania students were rioting over the ‘unfairness’ being perpetrated on their beloved football coach. A man who turned a blind eye to a possible child rapist.

The man who allegedly committed this crime is suspected of multiple occurrences of child sexual abuse in the ensuing 9 years.

Football.

Unbelievable.

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Brutal Morning in Baby Land

2011-10-19T20:12:00.000-04:00

Baby cries:

I'm unhappy!
I'm unhappy!
I'm unhappy!
I'm unhappy!
I'm unhappy!
I'm unhappy!
I'm un...clunk.

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Nothing Going On

2011-10-14T08:38:00.000-04:00

There is nothing even remotely interesting going on in my life right now.

It is so hard to get around, I rarely leave the house anymore. That definitely limits my life experiences. And the potential for any good anecdotes.

I have found a new website that I love, Pinterest. It might not be new to all of you, but it was to me. It is like an online bulletin board where people post virtual pin-ups: beautiful pictures, goofy pictures, funny sayings, sayings that are putrid, decorating ideas, awesome recipes. It’s fun.

Here are some samples:

Beautiful (Italy) -

Goofy -

Funny saying (this one is for my sister) -

Putrid saying -

Decorating idea (dream on) -

Awesome recipe (orange poundcakes) -

Now some people would say this is an Enormous Time Waster. They are wrong. It is actually a GINORMOUS Time Waster. But I say, if you can’t waste your time enjoying beautiful/funny/yummy things, what is the point of life?

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Thou Shall Not Kill: Standing Against Murder

2011-09-22T06:35:00.000-04:00

On September 21, a day of prayer for World Peace, a man named Troy Davis became the thirty fifth human being to be murdered by the United States government in 2011. Whether or not he was guilty is irrelevant, although the possibility of his innocence makes his death that much more horrifying.

Killing is wrong. Legally sanctioned killing does not make it right. Guilt does not make it right. The death of the killer does not change the status of their victim. Every human being has a value that we have no right to destroy. Not upholding the dignity of human life cheapens and diminishes us.

Arguments for deterrence are refuted by scholarly research every year. There are more murders in states with the death penalty than in states without it (1). There are a disproportionate number of people of color and mentally ill on Death Row (2). One hundred and thirty eight individuals who were scheduled to die at the government's hands have been exonerated in the past 38 years (2). That is 138 innocent people who would have been put to death. Religious, civil rights, political leaders, even victim's families, constantly plead for rational and merciful justice (3). The entire civilized world opposes the barbarity of the death penalty, except for the United States. In our bloodthirsty nation, over 63 percent of the population supports capital punishment.

Mahatma Gandhi said “An eye for an eye makes the whole world blind.” May God have mercy on us for our inhumanity.

References:

(1) http://www.deathpenaltyinfo.org/deterrence-states-without-death-penalty-have-had-consistently-lower-murder-rates#stateswithvwithout

(2) http://www.deathpenaltyinfo.org/documents/FactSheet.pdf

(3) http://www.worldcoalition.org/     http://www.americancatholic.org/news/deathpenalty/
     http://www.deathpenaltyinfo.org/religion-and-death-penalty
     http://www.mvfr.org/?page_id=3

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Birthday!

2011-09-21T07:08:00.000-04:00

Look at this, Sir Paul knew it was my birthday today!!

He's amazing.

Unfortunately, he is marrying the wrong woman again, as he hasn't realized I am the one who would make him truly happy. Sigh. What can you do?

I know I will have a stupendous birthday anyway!

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Fond Memories

2011-09-13T06:13:00.000-04:00

I was my parent’s first born and my brother is two years younger. It was just the two of us until I was nine, when my other brother Tom was born. So there I was with two younger brothers instead of the one thing I wanted more than anything – an older brother. I was a contrary little thing.

I did have the next best thing in my two older cousins. Michael was my mother’s brother’s oldest, rough and tumble and tough as nails. When spending anytime with Michael, who would eventually be the eldest of six boys, I was always guaranteed to have my long curls pulled, be pummeled, chased and bruised. Michael never sat still for one second and managed to do every Bad Thing a little boy can get into, but he had a grin and sparkling eyes that would melt an ice berg. He grew up to be Marine with a super sensitive side and was a great dancer. How I loved to dance with him!! He died in 1997 and I will never stop missing him. Every time we talked he would say over and over “I love you Marie Lynn.” I will always have that, I can still hear his voice in my mind.

Then there was my cousin Steve, who I have written about before. Steve was the youngest in his family and had two older sisters. His mother was my grandfather’s sister. Steve was Practically Perfect (I would say he is completely perfect but his wife might be able to come up with a flaw or two). As a child I loved Michael but I adored Steve. He never pulled my hair or hit me or quarreled with me. He let me win every game we ever played. He shared his toys. He pushed me on the swings, without me having to beg. How irresistible is that?!? He still is absolutely the best cousin I could ask for, supportive, encouraging and raises money every year for MS research through One Lap of America, an annual race event that he photographs. (It is described as “Nearly twenty-four hours a day driving with competition taking place as time trials on race tracks throughout the country.” I know nothing about cars and because my brain cells are diminishing at an alarming rate I find the whole event pretty confusing, but it is hugely popular.)

My great aunt, Steve’s mother, is an amazing 96 years old. I adore her as well, a woman who was a model of elegance and love for me as I was growing up. Every summer for years when Steve went away to camp, she would have me come up and stay with them. There are not too many parents who, having gotten rid of one kid, will import another. But her generosity, and patience, was endless. They lived in Yonkers and their house was built on a hilly plot with a super steep driveway. One day I got it in my head that it would be fun to ride a bike down the driveway into the garage. So I talked my older cousin Nancy into spotting for me. I went to the top of the driveway and I careened down, crashing directly into Nancy with a velocity I can still feel 45 years later. She managed to stop me, mostly by absorbing the impact, and thereby probably prevented me from bursting through the rear garage wall and dropping 30 feet to the ground below. It’s a miracle I didn’t kill her, yet both she and my aunt still speak to me. Just gives you some idea of their tolerance level.

My aunt just sent me a few pictures from when we were little that I am so grateful for:

I apparently was not wild about having my picture taken, but Steve looks adorable.

Oh look, another dismal picture of me but Steve looks, yep, adorable again. That is my grandmother next to me. Gosh I miss her.

Me, finally looking a little more cheerful, my brother (how cute is he?!) and Steve on Cape Cod.

My father and my brother on the swing set in Yonkers. In this picture my father is only 29 years old. Incredible.

I have been so lucky to have my two special cousins in my life. Many thanks to my aunt for sending me these pictures and reminding me of how fortunate I have been.

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If Only

2011-09-11T11:20:00.000-04:00

(Dedicated to the memory of my Aunt Joan and Uncle Tom Moroney and their son Dennis. Dennis, a husband, a father of two and one of seven brothers, was murdered in the World Trade Center on September 11, 2001. Aunt Joan and Uncle Tom suffered grievously but with dignity and now both are with him in eternal peace.)

I have a terrible habit of thinking in terms of ‘If only…” I think it about the little things. If only I had left earlier, I would not have gotten stuck in traffic. If only I had remembered milk I would have some for my tea. I think it about the big things. If only I had known I was going to develop MS, I could have saved more money. If only I had known my husband had a heart condition, I could have intervened and he might still be here today, enjoying his children and grandchildren instead of dying at 40.

And I think it about the huge things. If only human beings did not have such an enormous capacity for hatred and intolerance.

Most of the time thinking “if only” is futile. You didn’t, so get over it. Move on. You can’t change the past. On the other hand, “if only” can be a lesson. Be more organized, write things down, pay closer attention to the people around you. Oh yeah, and don’t hate and kill people because of their beliefs, skin color, gender preferences, or any other reason.

It is easy to be angry with someone who is not nice to you or is deliberately hurtful. But most of the time, you will not be moved to then murder them. So to take it the next step and hate a stranger, someone who has never uttered a word to you, to hate them because of who they worship or where they live, seems to me the least human of behavior. But I am clearly wrong, because centuries of history show that it is the most human of behavior.

I see two sides to the September 11 coin. One side is the horrific loss of vibrant, treasured, innocent people. The other side is the continued legacy of mistrust and bitterness that continues to pervade our world. The United States, and by extension, Americans, are despised for their perceived arrogance and ignorance. Muslims are held in fear and contempt, perceived as savage murderers. And those are only two groups I could cite. There are infinite sub-groups continually busy hating and killing each other all over the world.

The thing that most amazes me about this continued behavior is that NO ONE EVER WINS. No one. Hatred is never effective, never achieves the desired end, is never ultimately successful. And yet it thrives. I am clearly naïve and lack insight, because part of me just doesn’t get it. Why perpetuate actions that are doomed to failure? Then I think of our government, where partisanship and flat out antagonism continually undermines the good of our nation. I think of the animosity that arose this week in my family alone, a relatively tiny but bitter war where everyone was a loser. Then I realize, it all goes back to being human. And humans are infinitely flawed. So logic and facts do not count for much when one is blinded by hatred and a quest for vengeance.

I don’t know what the answer could possibly be. When faced with a dilemma, my first approach is usually prayer. There is a World Pray for Peace Day (September 21, my birthday ironically). There are many other Days of Prayer (National: First Thursday in May; Global: 5/27/12; World Peace & Prayer: usually in June; Women’s World Day of Prayer: this year was March 4; Unity World Day of Prayer: second Thursday of September), but these obviously haven’t worked yet. Of course almost all of them exclude non-Christian religions, so there might be a problem there. One wonders what exactly is being prayed for.

Armed hostility hasn’t worked. Negotiation hasn’t worked. What else is there? Communication? Education? Persuasion? None have worked. And we never learn. We are still hating and killing each other.

If only things were different. If only people were different. If only each and every child born in the world was taught human life is precious and we must cherish one another. If only...

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Family Rules and How Kay Went Away

2011-09-09T11:47:00.000-04:00

Family Rules

In my family of origin, being right is all. And everyone is right. It is everyone else who is wrong. Unless you agree with who is right. But you can’t, of course, because you are right, not them.

So be right, but also don’t talk about it. Ok, maybe gloat a little. After all, you are right. But otherwise, mum’s the word.

Got all that?

How Kay Went Away

After several years of failing health and resources, after more than half a dozen consecutive hospitalizations and crises, my brother and sister arranged last year for my mother to reside in a long term care facility. They had invested time and energy and planning in caring for my parents 24/7 and were frantic about their safety. So this was determined to be best for everyone. The home was brand new, absolutely beautiful and the staff was incredibly caring. My mother despised it. From the second she set foot inside its doors, she campaigned to get out, despite the fact she was receiving impeccable care and was healthier, and safer, than she had been in years. So was my father, who visited her there every single day and was even given his meals there.

Suddenly, down swoops two of her Sisters, my aunts, joining the crusade of a mentally and physically ill woman they each lived more than 200 miles away from and saw maybe twice a year. Let her out, they said. There is nothing wrong with her or your father, they said. They deserve to be together after all these years, they said.The Sisters knew nothing. They knew nothing of the ER visits, the confusion, the middle of the night wanderings, my father’s growing dementia. They knew none of this even though they were told, over and over. They knew nothing of this because they refused to believe it. They declined to believe four competent, cognizant adults who saw my parents nearly every day. My parents were fine, The Sisters KNEW it. We didn’t know what we were talking about.

Thus my mother was discharged home, with The Sisters rabid encouragement, to the care of a man with documented Alzheimer’s Disease. And it was all downhill from there, because my parents were failing and ill-equipped to manage on their own. Did my aunts see how bad things were going? La la la, no no no, I can’t hear you. It took nine long nightmarish months, full of more crises and emergencies and close calls, all handled by my siblings, before my father ended up in a long term care facility himself, desperately ill with congestive heart failure. One Sister then packed up my mother and moved her from New Jersey to Delaware, leaving my father behind. My mother moved hundreds of miles away to her younger sister’s, where she was cosseted and catered to. Which certainly was nice to an extent, but effectively eliminated myself, my siblings, my father and their friends from her life. And my mother was ok with that. After decades of her dramas and illnesses, real and imagined, we were weary. So the general consensus was “You want her? You are welcome to her.” She was in her glory. But she would have a price to pay.

Because of The Sisters’ fantasy world, she wasn’t getting the health care she needed. Weeks went by and she did not see a physician. As she got sicker, The Sisters’ denial kept pace. “She’s fine!” declared my aunt. “Doing great!” Until she ended up in the hospital, also with congestive heart failure. They had finally been dragged onto the See I Told You She Was Sick Express and would not be getting off until she died.

Last month, my mother agreed to an ill-advised surgery. It went poorly. Her condition deteriorated. But it apparently did not occur to The Sisters she should be moved back with her husband. According to them, we, The Miserable Wretches, had thrown in the towel. They had put in their weeks of care and now they, The Heroes, were in charge.

There were times when we not only had no idea what my mother’s condition was but even what hospital she was in. She was like a walnut in a shell game. Finally, with this last discharge, she was sent out with hospice. Not home to my father, but rather back to my aunt’s home in Delaware, which is how she came to die far away from her husband and children. And now a new sideshow to the circus begins, with bitter recriminations – Neglectful Children (their version) vs. Hi-jacking Sisters (our version). And, naturally, we all believe we are right. We all KNOW we are right.

In the quest for Rightness, my mother’s funeral became a battlefield. My father asked me to write her obituary – but it turned out they had already submitted one without even consulting him (and it was inaccurate). Relatives and friends wanted to know what the plans were – The Sisters scheduled the funeral for less than 30 hours after she died, leaving little time for people to adjust schedules. We pleaded with them to postpone it by at least one day, but they (along with my brother, who had apparently decided he now wanted to be a Hero too) wouldn’t budge. Many people were subsequently unable to attend. A brief viewing was planned before the hastily arranged Funeral Mass. My mother had stated over and over through her life she abhorred open caskets and wanted ONLY a closed one. Her casket was open, despite telling The Sisters this. My sister ordered food and told The Sisters she would provide a luncheon at her house afterwards, acting as hostess for my father. The Funeral Director announced to the mourners all were invited back to my sister’s house as my father’s guests. But at the cemetery, without a word, my brother and The Sisters turned their back to her, put my father in a car and drove him away to a restaurant. They had planned that from the beginning, but never told my sister, even when she had graciously invited them back to her home.

Can anyone say “Kay who?”, because honoring my mother became lost in the hostilities.

After the battle. No one wins.

Back to the Rules

I have broken the most cardinal of Family Rules by stating these things out loud and, worst of all, telling them to strangers. However, I decided a long time ago that I was living by different rules. And very few of them. Rule number one is be fair and kind as indicated and/or deserved. Rule number two is laugh at myself when needed. Rule number three is don’t worry about any other rules.

On the Relationship Balance Sheet where you would determine People Who Cause Me to Feel Great About Myself and People Who Diminish Me and Cause Me Heartache, I am choosing the first group. I am choosing people who model health and serenity and compassion. I am cheerfully eliminating malice, control and pain.

The punishment for breaking our Family Rules is dire. Rejection and judgment are the consequences when we do not conform. Dissenters are exiled.

The ironic thing is, exile suits me just fine. It’s safer here. And it is, mysteriously, filled with decent and dear friends who are good and kind to me. Go figure.

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A Motherless Child

2011-09-07T09:11:00.001-04:00

My mother passed away yesterday afternoon, far from where I live,in her sister’s home in Delaware. Two ofher sisters were with her, but none of her children. Nor her husband. The reasons are a long story, as complicatedand sad as my mother herself.

To say we had a fractious relationship would be anunderstatement. Although I have neverbeen a sparrer, just a sponge for wounds and hurt. My mother, young, beautiful and smart when Iwas born, had an impossibly deep capacity for both being sad and inflictingsadness. She was unutterably miserablefor most of the time I was growing up, languishing in her bed with crippling depression. In and out of hospitals during my childhood,her homecomings always meant the same thing – blame, not recovery. And I was the scapegoat.

She was first hospitalized when I was about six years old. When she came home, I was overjoyed. Until the volley started. It was, it seemed, my fault she had fallen inthe first place. If I hadn’t been such abad child, she firmly screamed in my face, she never would have gottensick. It was my badness, apparently inherent,that was the source of all her ills. Herdoctor’s were the ones who had told her this. Get rid of me and her problems would be solved. Get rid of me or, at a minimum, make me intoa good girl.

Of course, not only did her doctor’s never tell her any suchthing, but I was a good girl. Probably the goodest girl on the whole of ourcity street. I was a paragon. And the more she told me how bad I was, thebetter I strived to be, all the while pleading with her to not be mad at me,promising I would be as good as she needed me to be.

But I was never good enough and she told me so, over andover and over. For decades.

The Family Tragedy behind all of this actually did involveme. One June morning when I was fouryears old, I wandered out of our apartment. I do not know where she was, but an educated guess is she was in bed,under the covers. And I, a gregariouschild, was beckoned by the other kids playing outside. In a flash, a piece of glass was thrown and alteredthe trajectory of my life. It cost me myright eye. I vividly remember beingcomforted by the other children while people went looking for my mother. Her version of the story was that she was standingright next to me and watched helplessly as the accident unfolded. Because we Never Talked About the Accident (aFamily Rule), I only found out about her fabrication recently. But I am old enough to realize now, what elsewas she to do? Admit to her family, herhusband, that she had neglected her child to the point of maiming? It was an impossible position and she wasimpossibly tormented by it for the rest of her life. Unfortunately, I was swept away as well inher river of guilt and shame. As I grew,there were times I had to stay away from her because of the toxicity, sometimesfor years. It was the only way I couldsurvive.

And now she is gone.

Healing

My mother was such a force of nature, I am simply shockedthat she has actually ceased to be.

I am commanding myself to acknowledge how wounded shewas. Our shared, often grievous, history cannot beerased, but it can be understood and forgiven. I must remember that she was a complex, anguished woman who also wasshrewd, funny, smart and quick-witted. She had been breathtakingly beautiful in her youth. She was frequently manipulative and selfish butjust as often, I think, her heart was in the right place. She was a brilliant and proud cook. She was a devoted daughter to my belovedgrandparents. In her later years, shewas a model grandma, taking the kids apple picking, playing with them, engagingwith them. Apple picking! My sister and I still find our jaws droppingwhen we contemplate it.

In my belief system, she is now healed and whole withGod. She is

suffering no more, neitherphysically nor emotionally. “And Godshall wipe away all tears from their eyes; and there shall be no more death,neither sorrow, nor crying, neither shall there be any more pain: for theformer things are passed away.” Revelation 21:4

I love the idea that she is happy. It makes me so happy for her.

Mom, may God hold you until the day we meet, happily, again.

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Up On the Roof

2011-09-05T04:13:00.000-04:00

After seven years, as many roofers and as many ‘repairs’, the mystery of my leaking roof and subsequent collapsing ceilings has finally been solved. (An addendum to those who are not familiar with the story: my 'new' roof started leaking within six months of installation. By that time the roofer had closed up shop AND declared bankruptcy. No recourse there. :( )

This last roof repair person was just the nicest man, sympathetic and on the ball and thorough. As I said, he took it all in and quickly: peeling plaster, wheelchairs, walkers, canes, me with an IV in my arm. This was, finally, one smart guy. He saw from the get go this was ugly and he knew it was going to get uglier.

The pictures he took told the story. Under the lovely textured Timberline shingles that I paid extra for all those years ago when I was healthy and working and had nowhere to go but up, were thousands of nails. As it should be. Something has to hold those lovely shingles in place. The problem is apparently the person who installed the roof on the entire front of the house and back of the sunroom had his nail gun on the wrong setting. Not only did that person nail down the shingle, but in each and every case, because his gun was set too high, he blew a partial little hole in the shingle as well. That is right. What I have on the front of my house is not so much a roof as swiss cheese. Hundreds and hundreds and hundreds of teeny tiny holes, just like a colander. A colander that has let every drop of rain in for the last seven years. And caused three collapsed ceilings.

But smart and sympathetic doesn’t mean free, does it? I got the estimate in the mail yesterday. Three thousand two hundred dollars. Not counting wood. The entire thing needs to be redone, as there is no practicality in caulking thousands of teeny tiny holes. That would be, actually, impossible.

Even though I knew it was going to be bad, this was still a shock. And moot, as I do not have $3200. Or anything close to it.

So here I am:
• I cannot maintain or afford my home any more.
• I must sell it.
• I cannot sell it with a leaky roof and falling down ceilings.
• I do not have the money to repair the roof.

I have had my back against the wall before and I have either figured out a solution or one has presented itself. I have learned that while things may not work out the way you want, they always do have a way of working out. So now I just have to come up with…something.

In the meantime…

When the Going Gets Tough the Tough Get Quilting

In my steroid mania and roof distress, I got it into my head that it was past time I learned how to do a log cabin square. That is the pattern that has log-like strips surrounding a tiny red square, which represents the hearth and fire at the center of a home. I had always been a little intimidated by the idea of all the pieces and it seemed too complicated, but complicated and distracting fit the bill this week, so I dove in.

Baby steps:

This is the first one I did and I found it wasn’t that hard. I don’t know what I will do with this piece. Maybe make a little pillow?

Then it became an obsession.

I made this wall hanging as a thank you for Christine putting me up during the storm:

I made this bag with hand dyed leftovers from the quilt I made for my new coming grandbaby:

I decided to make a throw for my own bed, doing a quilt-as-you-go method, quilting each square and then sewing them together. I’ll end up with a pre-quilted top and will just have to add a backing and bind it. I already have a whole row done. It seems too easy, I feel as though there is going to be a pitfall somewhere.

I think I have the log cabin thing down.

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Hurricanes Everywhere

2011-08-31T15:05:00.000-04:00

Public Hurricane

The hurricane blew through the Jersey shore pretty much like a typically bad storm. Nothing compared to the horrors elsewhere in the state and in other places. No power for two days, a pain, but nothing tragic. About a half a foot of water in the basement, but that cleared up as soon as the power kicked on the sump pump. My Infamous Roof leaked, my plaster is peeling in the living room and sunroom ceilings again and I have a call into yet ANOTHER roofer (#7) to figure out where the problem is. Phone service is still out, they said that should be fixed by Friday.

Because of changed plans, it developed I was alone when the storm started to hit Saturday night. After some back and forth, I decided to take my friend Christine up on her offer to stay over with them, mostly for the company. I figured if I stayed home alone I would be both nervous and feeling sorry for myself. So I packed up Bella and my kabillion medications and hightailed it three miles away. Came home Sunday morning, creeping down the street I felt like Scarlett in Gone With the Wind waiting to see if Tara was still standing after the Yankees had been through. Tara was still standing! I said yay, Bella said yay and we settled in to keeping ourselves entertained without power. I had my industrial sized flashlight at the ready (also handy as a potential weapon to brain any villains), my Kindle and lots of tea to sustain me and the electricity came back on Monday morning. All in all not too bad in comparison with others.

My neighbors, the Fuckwits, had the benefit of a generator. Why, one might ask, would a pair of able-bodied, 30-somethings need a generator? Why, to keep their beer cold, why else?!?! The generator was so loud it was like have a jet engine relentlessly blasting in my back yard for over 24 hours. I was ready to pound my head against the wall by the time the power came on.

Personal Hurricane

It started, as it always does, with pain that got worse and worse. And I, as I always do, ignored it. The pain in my leg was like someone had taken it and twisted it as though they were wringing out a mop. And then it puffed up like the Michelin man. And then it got harder and harder to walk. Until, finally, I really could not walk at all, I could only do a crab-like shuffle while gripping furniture and molding for dear life.

After weeks of this building up, it finally occurred to me that I needed a course of IV steroids. Bless his heart, my neurologist ordered it without question. I felt better almost immediately after the first infusion. Of course, because nothing is ever easy, my IV infiltrated overnight. When I flushed it this morning the saline collected in a little puff beneath my skin instead of flowing into my vein. So now I have to have a new IV put in and keep my fingers crossed it will last for one more day.

After three days of IV Solumedrol, I will feel better AND I will be a sleep deprived raving lunatic. What a trade off.

I have my new book to help correct my viewpoint. Unfortunately, I can’t find it because Bella knocked it under my bed (yes, things falling off my bed then fly mysteriously horizontally, so it eventually takes a broom and multiple exclamations of “So THAT’S where that was!!”, to find something that slipped off an hour ago. The book is called Alphatudes and it is all about being grateful for all the shitty things that happen in your life. I mean, accepting with grace that life isn’t perfect. My friends, which is why I adore them, say “PHOOEY!! If there was ever a time to feel sorry for yourself, this is it.” Oh baby, I AM ALL OVER THAT. So I am working a crazed balancing act of self-pity and counting my blessings. It is fun, angst and sanctimony at the same time. It is like having my cake and eating it too.

Breaking News: IV and Roof

The nurse was able to get here this morning and get a good line going. Fingers crossed it lasts until the morning. Second infusion down, mania at Eleven.

The roofer, taking in my falling down ceilings, my power wheelchair, my walker and my IV, was practically in tears and wringing his hands in sorrow after evaluating my roof for about an hour. It will, predictably, cost a fortune to repair. A FORTUNE. A brand new roof that I paid $7000 for just seven years ago and have invested thousands more in fruitless repairs. The original roofers botched the job so badly the whole front has to be ripped off. THE. WHOLE. FRONT. OF. THE. HOUSE. That horrible sound you hear through your window? That’s me, wailing. I think I will be able to stop in a few hours.

Sigh. Alphatudes-shmalfaphatudes, where’s the vodka.

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Message to My Children

2011-08-25T15:30:00.000-04:00

Our family is going through a lot of changes these days. Especially with me being sick and with life being so unpredictable, I was inspired to write a list of lessons I have learned over the years that I would like to impart to them.

Dear Kids,

Things I have learned (often the hard way) and things I want you to know:

• Be kind to yourself. Not indulge yourself, but love yourself the way you deserve to be loved. Don’t be hard on yourself if you make a mistake, just learn from it. Find what you love as your life’s work. You deserve to be happy. Work hard at what you love, but take time to keep balance in your life.

• Be kind to others. Treat them the way you would like to be treated. Smile, hold a door, give someone a ride, let someone in in traffic, overlook it when someone is acting like a jerk. Don’t hold people to impossible standards that they can’t meet, appreciate their humanness. Give back. That kindness will come back to you, over and over. That is how you will be a good example for your own children.

• Don’t let little things bother you. It’s not worth the energy. And if it is a big thing, take a deep breath, walk away, cool off and go back to deal with it when you feel more calm. Things always work out one way or another. Don’t waste your time being angry unless it is over injustice or moral wrong. Anger takes a terrible toll on your soul.

• Be grateful for what you have. Don’t look at other people and think they maybe have it better than you. I guarantee they don’t. There is an old saying: “If you put your troubles in a pile with ten other people, you would take yours back.” You never know what kind of burden someone is carrying. Another good reason to be kind.

• Stay close to your siblings. Work at it. Time goes by so fast. You are the only family you have, cherish that. Enjoy each other. Ignore petty things. Remember what good people you are.

• Tell your children about your family, all the funny and fun stories you can remember. Focus on the good, but don’t ignore the bad. Learn from the bad that people are human and need to be forgiven.

• Have faith in a spiritual power. In hard times, that is where you will find strength and hope.

• Laugh. Look at the funny side of things. Keep a sense of humor.

• Remember that life is very short and you only get one go at it. So make sure if you are investing yourself and your emotions in something that it is worth your while.

• Know that you were always loved, from the minute you were known, before you were even born. You may not have gotten the perfection you deserved, but that overwhelming love was always there. It can give you solace when you need it most, so hold onto it. You will never be alone, that spirit of care and affection is always with you. Nothing can end it, not even death.

In a nutshell:

Love. Laugh. Whine (a little). Nourish yourself. Do these things, you will be happy and you will make the world a better place.

Lots of love,
Mom

My children, 1989 Fireman's Park, Ocean Grove, NJ

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Summer Days

2011-08-21T06:49:00.000-04:00

Summer days with my grandchildren.

Cousins having a fun dinner at The Circus.

Madailein practicing her future occupation of simply looking gorgeous.

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Pray for Peace

2011-08-06T22:58:00.000-04:00

On the anniversary of the bombing of Hiroshima, we owe it to our children to pray for peace, that such a calamity will never be visited on any human beings ever again.

Hiroshima Peace Memorial

I offer prayers for our soldiers all over the world who are fighting against tyranny and evil. I pray for the families of those who will not be coming home.

To lose even a single soldier is overwhelmingly tragic, but I pray their sacrifices will not be tainted by giving in to vengeance. “An eye for an eye makes the whole world blind.” (Mahatma Gandhi)

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Twenty Years On, Still Sorely Missed

2011-07-30T07:40:00.001-04:00

I am blessed to have so many wonderful friends in my life, people who sustain me with laughter and encouragement and love. But, I guess because I am human, it is one who is missing that often occupies my thoughts and my wishes for things to be different.

I first met my friend Sheila in my capacity as a La Leche League leader. It was more than thirty years ago that I received a routine phone call from a mom who had a breastfeeding question. It turned out we had much in common besides being young mothers. We belonged to the same church and we had the same Irish Catholic background, with all its accompanying and frequently hilarious baggage.

It was obvious to me very early on that Sheila was an extraordinary being in the guise of a very ordinary person. On the surface, she was a wife, a mother of three, a daughter, a sister to her many siblings and she had a great sense of humor. Once you got to know her you realized that first of all she had true and deep faith in God. Nothing proselytizing or smarmy, but a quiet and matter-of-fact spirit. She was someone who did good at the most basic level, with no fuss or calling attention to herself. The first one with a phone call, a hug or a meal when you needed it, sometimes even when you didn’t know you needed it.

In 1986 she found out she had a tumor that was supposed to be benign, supposed to be eliminated in a simple surgery. Talking to her the day after the operation, while she was still in the hospital, at one point she said “It wasn’t what they thought it was”. I couldn’t acknowledge the words, I kept blabbing on about other things. Ten minutes after we hung up I called her back. “What do you mean ‘It wasn’t what they thought it was’?” I choked out. “It’s not benign after all” she simply said, “And it came from another site.” Hearing this was like having syrup poured over my brain, the stickiness of the implications inescapable but the thickness just so hard to take in.

It was finally determined that breast cancer had been growing stealthily, insidiously and had spread to her brain. Medicine pulled out all the stops, although in the basest layman’s terms, she was a goner. But she was also stubborn. And so a five year battle began.

Sheila suffered tortures over those five years that most people never knew about, because she never complained. She kept up her life as if there were nothing different, even when she was in agonies of pain. Most of all, she continued to be a devoted, passionate mother to her three children. There were many trips into New York for chemo. Sheila always had someone to go with her. She was so well loved, there were more volunteers than there were opportunities, so she would go out of her way to find a way to include a person and make them feel as though they were helping.

She hung in there, but we often talked about how hard it was to discern the difference between practical hope and unreasonable expectations. We never really came up with any answers. I never believed for a minute it would actually happen. I was so sure we laugh together at our children’s weddings. She finally decided that if nothing else, she wanted to live long enough to see her youngest receive his first Holy Communion.

She did. It was in May of 1991. She grew steadily weaker until by the last week of July she couldn’t get out of bed. I brought dinner over on the evening of the 29th, but by that time all she could eat was Jell-O. Sitting on the bed talking to her, my arm brushed her foot, which was like an ice cube. “Oh, your poor feet!” I cried and I started rubbing them to warm them up. I wasn’t a nurse yet, I would be starting nursing school in a few weeks. So what I didn’t realize was that Sheila’s feet were cold because her heart was failing.

That night she was taken to New York by ambulance. She died in the early morning hours. Ironically, for how loved she was, she was all alone. I’ve often thought that was so like her. Only by being alone did she feel she had the freedom to go.

In twenty years I do not think there is a day I haven’t thought of her. I am such a whiny baby when it comes to my own illness, I ask her to pray for me, that I could have even a fraction of the grace she demonstrated. I remember those days when we had a bunch of little kids running around and we sat at each other’s kitchen tables, drinking endless cups of tea and laughing ourselves sick over anything and everything. I miss you still, Sheila, and look forward to the day we meet again.

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It’s Too Darn Hot, Part II

2011-07-26T13:03:00.000-04:00

I received so many lovely compliments on my work. Thank you everyone!! I have to admit even though it is brutal being unemployed, I am grateful that I have the time to do so many creative things. It is such fun and so rewarding. And I never fail to think of my two dear aunts who taught me, at different times, how to sew and how to quilt. My Aunt Dottie was a brilliant seamstress who sewed all the costumes for my cousin’s recitals for years. She taught me how to sew when I was little. She was endlessly patient but had high standards. If I am hurrying I can still hear her voice say “Now that is just a basting stitch. You can do better than that!” She was so, so good to me when I was growing up. What a wonderful woman she was and still is at over 90.

My Aunt Joan taught me how to make drapes and how to quilt. I told her recently I was so grateful for that and she said the most beautiful thing. She told me she taught me the basics but I took it to an artisan level. Compliments are not common in my family (we believe in mind reading, lol) so this was a real gift.

Soundtrack for the Heatwave and Some Broadway Moments

I found this great clip of the Too Darn Hot number from Kiss Me Kate. It is long but worth it for the great Cole Porter lyrics and the amazing dancing:

I took my Elizabeth to see this for her eleventh birthday and we had such a good time. We waited afterwards at the stage door, always fun to do with kids, a teensy bit weird when you are a grown up. So it is always good to go with kids. :) We chatted with Michael Mulheren, whose sister was in my class at Red Bank Catholic, while he was three years behind us. I mentioned RBC and he beamed and was just so enthusiastic and charming. Here he is (the bigger guy on the right) in Brush Up Your Shakespeare:

And last to come out was Brian Stokes Mitchell, looking every inch a Broadway luminary, with an entourage, his coat over his shoulders and, I swear, a white silk scarf. “Ah, you patient people!!” he gushed, as though there was a crowd, although it was just Elizabeth and I. He was gracious and sweet and made a big fuss over her.

This is a really crappy clip (the only one I could find), from the Rosie O’Donnell show, that only gives a hint of his general hunkiness:

He was hilarious in Frasier too, but I couldn’t find any clips of that at all.

It is a little cooler today, but I can’t wait until November!!

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Too Darn Hot!!

2011-07-25T09:51:00.000-04:00

Hope everyone is holding up well in this brutal weather. I have sequestered myself in the AC and have not budged. Otherwise I am like the Wicked Witch of the West when she has water thrown on her.

http://youtu.be/j7GJcKuVGm8

Yep, that's me alright.

So I've been doing a lot of sewing, very little writing, some fooling around with my blogs.

Here are some of the projects I've been working on:

A new pin cushion. I made it out of an old pot, embroidered some bees onto felt and then glued the felt around the edges.

Finished this quilt:

Back of quilt

The marvelous, hand dyed fabric came from Ruby Mountain Dye Works, an Etsy shop based in Georgia. Fantastic colors and a warm, personable proprietor make these fabrics irresistible.

Working on a few other quilts, including this one for Madailein, in a double Irish chain pattern:

Madailein is teething something awful and I found these dolls on line that babies can safely chew on. So, copy cat that I am, I made my own versions:

I made some with fleece and some with flannel. I made up the pattern, so they are all different shapes and sizes. I sewed on little hearts but in the picture right now when I looked at it the yellow hearts look horrifyingly like Yellow Stars. I might have to rethink that little detail.

I made some bags too. The one I made for myself turned into a much bigger project than I had imagined. And it is large enough to carry a small child in.

I made a glasses case and cell phone holder to match:

If only I knew where my actual cell phone was.

And here's another, for a friend:

Finally, I have changed my signature because the old one with the pencil was just looking tired.

Stay cool everyone!!

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The Way We Are

2011-07-13T00:43:00.000-04:00

My sister and I are very close, even though we are 13 years apart in age (I’m the old one). We totally get each other, understand things before they even have to be spoken. We’ve been through the same family boot camp, just different graduating classes. We know better than anyone we have…issues. Not with each other, but with the world in general. We see peril everywhere and we are both ~~incredibly~~ ~~sort of~~ a little neurotic. Or, as we like to put it, we are functional lunatics. That is probably what we are going to call our book. “Life, as Lived by Two Functional Lunatics” Or, “The Idiot’s Guide to Functional Lunacy”. The title possibilities, which usually render us screaming with laughter, are endless. But then, we are easily amused.

Distressingly, my sister had an awful fall this morning, slipping on her steps, landing on her backside and thumping down the rest of the eight or so stairs, scraping one arm in the process and wrenching the other one, which got caught in the spindles of the railing. She is in terrible pain, but nothing seems to be broken and all she can do at this point is rest and take pain medication.

Our father coincidentally called her right after she fell. He subsequently called our mother and told her. Our mother then immediately called her eleven hours later to see how she was.

Kay: Oh, you poor thing. I am so sorry this happened to you. This is horrible. This is terrible. Oh my God. How are you feeling? (this is her standard There’s Been a Catastrophe Even if it is Only in My Own Mind speech; see my bout with shingles).
Cathy: I’m ok, just very achy.
Kay: What did you hurt?
Cathy: I hurt my arms and I fell on my tailbone.
Kay: Oh, that is terrible. They will probably have to wire it shut.

Now, Cathy reports, there is dead silence, as she contemplates this last statement. Wire my backside shut?!? They do that?!? Why would they do that?!? Because I talk out my ass?!? (made herself laugh there, heh heh) I never heard of wiring someone’s…then the light bulb went on.

Cathy: MA! I said my TAILBONE, not my JAWBONE.
Kay: Oh.

Say no more.

It is good to have a sister.

"Insanity runs in our family. It practically gallops."

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Being a Grandma

2011-07-08T14:09:00.000-04:00

Being a grandma means singing Abba Dabba Honeymoon 20 times before breakfast alone, just to see that smile.

Debbie Reynolds, singing it almost as well as I do:

or

http://youtu.be/VJHJAkhacGU

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Heartbreaking, But Justice Worked

2011-07-06T13:13:00.001-04:00

If Casey Anthony had been on trial for having a personality disorder, she would have been found guilty in an hour. There was a mountain of evidence to support that charge. But her jury bravely and rightly came to a just conclusion – while her behavior was despicable, it was not proof that she murdered her little girl. This verdict was especially symbolic in a week that started by celebrating the basis of our Democratic processes.

The case was over prosecuted and sensationalized. There was no data even to prove that the child was murdered. My guess is that Casey routinely medicated Caylee to get her to sleep so Casey could party. And one day Caylee didn’t wake up. I believe it was an accident, albeit still a criminal act. I think if the prosecution had gone for a scenario similar to this they might have prevailed. But they were greedy and it blew up on them.

The trial certainly opened a window on some real ugliness in America. We saw a mother with a myriad of problems, yet no responsible person intervened in any meaningful way. We saw a daughter and sister willing to throw her entire family under the bus to defend herself. We saw complete strangers taking this so utterly and inappropriately personally that it is almost like a mob mental illness, with weeping and screaming and wishing Casey Anthony to hell and Nancy Grace declaring “the devil was dancing” at the verdict. Worst of all, we saw a doomed toddler and could do nothing to save her.

Another sad and ugly fact is there are hundreds of Caylee’s out there. Children we will never hear of and no one will do anything to help, especially if the child is poor or a minority. While our justice system works to a certain extent, I think there would have been a far different outcome if Caylee and her family had been black or Hispanic.

People are in an uproar that Casey Anthony has ‘gotten off’. But there is no future for her. There wouldn’t have been one even if this ghastly tragedy hadn’t occurred. Limited insight, impulsive behavior, unstable relationships, serial sexual partners, inability to hold a job or take responsibility for poor choices, this girl was a train racing towards a wreck. Justice according to our laws was done. Casey will eventually meet another kind of justice at her own hand.

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Happy Fourth of July

2011-07-04T10:47:00.001-04:00

This is a fun clip of Kate Smith singing God Bless America, from "This is the Army", 1943. It starred George Murphy, Ronald Reagan, Joan Leslie and Irving Berlin, who wrote all the songs.

Hard to imagine this was a brand new song at the time, it had only been introduced in 1938, written by a man who spent his first five years in Russia. Berlin once said his clearest memory of that five years was watching his house burn to the ground, courtesy of the Cossacks. His earliest years in the United States, where his family immigrated, were horrible and deprived. Originally Berlin's greatest ambition was to be a singing waiter. But his songs were so great he was a huge success by his early 20's.

God Bless America indeed.

Patriotic matchbook covers from WWII

Kate Smith for my e-mail readers:

http://youtu.be/TnQDW-NMaRs

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The Dispatchers of Simple Gifts and Minor Miracles

2011-06-17T14:25:00.001-04:00

You get back in this life what you give? This is such a common belief for many, but if there truly is that kind of balance, I cannot fathom what I have done to deserve the people in my life who have been the conductors of small but miraculous and healing events.

Just in the past two weeks:

• There was the check that unexpectedly arrived in the mail, a generous, kind and timely gift sent with concern by someone who is very special.

• There was the beautiful bouquet of flowers delivered on Saturday. The card said “Dear Marie, I wish I could give you a big hug but I’m afraid my arms don’t stretch as far as the U.S.” From a dear, warm hearted friend in the U.K.

• There was an opportunity to volunteer and help some out of work people with their resumes, thanks to a networking referral by a thoughtful colleague. It got me out of the house and into the real world for a little while. This was better for me than for the people I coached.

• There was a freelance writing opportunity, again referred by a friend.

• I was evaluated on Monday to determine what kind of new power chair I needed. The price quote was $25,000. My insurance coverage is $2000. I mentioned this sardonically on Facebook, that it was laughable and unachievable. I instantly received a message that a friend was going to make some calls. Her next message was that she knew of someone who would be willing to give me their never used power chair. For nothing; no charge. I mean within minutes of me posting that note. And indeed it was so. A brand new, pristine chair from a lovely woman I have never even met. My son gave up his afternoon to pick it up for me.

There has been no burning bush, no parting of the Red Sea, no turning water into wine (although I would quite like that), but little miracles none the less. Small marvels that have a profound impact on my life, both the quality and the outlook.

Ok, on second thought, maybe the chair was a pretty big one.

Now, I am only related to two of these people and one is by marriage. Yet every one of them went out of their way to make sure I obtained something I needed. Or something I didn’t even realize I needed. And then, when I thanked them, they demurred and indicated I was special to them in some way.

My cousin-in-law is a very, very good man, a savvy, no nonsense business person, but generous and thoughtful. He has been so kind to me. Talking to him the other day he said “Blood is thicker than water.” Incredible irony, as we are not blood relatives. So I believe the saying needs to be revised: Blood flowing through a loving and giving heart is thicker than water. The sweetness of these people is a mystical thing to me. It is not just about my needs. Their caring spirits are healing to all of us in proximity to them. Their goodness and generosity of spirit cannot be contained.

This has not been limited to the past few days, my friends are remarkable year round. And then there are my readers, who also make such a huge difference in my life. I have a list of both a mile long.

My miracle purveyors this week have simple and ordinary names: John, Marylynn, Jane, Phyllis, Louise, Lisa, James. But that simplicity is misleading. They and others like them are the power that drives goodness through this world.

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Tag, You're It!

2011-06-15T15:08:00.000-04:00

I have been tagged!!

My sweet friend Jane in the UK writes the marvelous blog The Witty Ways of a Wayward Wife. She is TOO funny and totally worth checking out.

At any rate, you will hear more about Jane and what a good friend she truly is in a future post. In the meantime, in her post on Sunday, she tagged me.

I haven’t been tagged in a while and I have always had mixed feelings about it. It can be fun. And I don't want to seem churlish by not participating. But there are always so many rules! And they are always scary and confusing and I don't always understand what they mean, like this:

1) You MUST tag 759 million fellow bloggers.
2) You MUST redirect back to their RSS and TBS and DVD and PCP. And their BVD’s too.
3) If you disobey these rules, your blog will disappear forever and you will become a blogging pariah because in your ignorance you don’t deserve to blog, write or, indeed, live.
4) Might as well give up now, it is clear you are doomed.

But Jane, bless her heart says we can throw away the rules if we want!! Hooray!! I will still stick to a modified set of guidelines, I’m an Episcopalian, not an anarchist. But I will keep them simple.

First here are my answers to the tag questions:

1) If you could be any historical or current character who would you be?

I would love to visit a historical period, like the 1930’s New York City, but I would want to be myself, not someone else.

If I HAD to pick someone else it would be umm…umm…umm… I know! Martha Gellhorn, the journalist. She got to do it all and, for a little while, got to do it all with Hemingway, too. Although I might pass on the 89, almost blind, suicide part at the end. At that point I would switch to become someone else. Hey, if you have magic powers, might as well take advantage of them.

2) Name an interesting fact about yourself.

The most interesting thing about me is there is absolutely nothing interesting about me. lol

I guess the fact that I have a lot of education in a lot of different subjects could be interesting. I have a Bachelor’s degree in English Literature, I’m a licensed nurse, a certified Childbirth Educator and I have a Master’s degree in Communication. That is 20 years of school. Yet I still can’t find a job. ha ha ha ha ha ha (that is hysterical, ironic laughter)

3) If you could go back in time and change one thing, what would you change?

Honestly, I would keep a better eye on Cain and Abel than Eve did. Who knows what the world would be like today if those boys had gotten along!

4) What character traits annoy you?

I’m assuming these are character traits in others. None of mine annoy me, whereas other people irk the piss out of me. Such as, people who are know-it-alls. I hate it when someone ~~knows~~ thinks they know more than me.

And people who are hypochondriacs. That drives me straight up the wall! I know so many strong, wonderful people who are sick and would give anything to be healthy. So to hear anyone whine about something minor or non-existent makes me want to slap them into gratitude for their health. Or just slap them, period. I think I might enjoy that. And not in a pervy way, either, so get your mind out of the gutter.

5) Name one thing that you would change in yourself.

Jane and I clearly have the same level of non-existent self esteem –what wouldn’t I change?! I think the only good feature I have is my bum too. Me and Jane, a pair of proud bottoms.

My right earlobe is ok as well. Everything else is negotiable.

6) What do you consider your biggest achievement?

I am 56, single, half blind, fat, unemployed, depressed and can no longer walk without assistance. No contest: my biggest achievement is getting out of bed every morning. Wait…maybe my biggest achievement is not lying down on the railroad tracks? Although, to do that I would still have to get out of bed. So, nope, it definitely is getting out of bed every morning.

TA DA! There you have it. Now my tag-ees and I just have to follow the ultra simple rules:

Rule 1 - No Tag-Backs (Surely you have other friends?!?! Besides, I couldn’t do this again so soon without heavy sedation. Ack, the rules, the rules!!!)

Rule 2 - You must tag a further 8 bloggers (“Or however many you want to says Mrs T making up her own rules as she goes...” I LOVE this part, a direct quote from Jane. However many I want. YESSS!)

Rule 3 - You must answer the questions. (Easy peasey. The questions are all about YOU! Does anyone have a more favorite subject?!?)

Rule 4 - You must have a link back to the people who tagged you. (Ok, even I know how to do this, see intro with link back to Jane.)

I have chosen to tag:

Margaret: Nanny Goats in Panties
Nicky: We Work for Cheese
Kathy: The Junk Drawer
Cardiogirl: Cardiogirl: 19% body fat 100% fun
Jen: Redhead Ranting
Pierre: Pierre’s Lab

Thanks everyone! Have fun!

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Farewell, Mr. Handsome

2011-06-04T20:42:00.000-04:00

Ten years ago my daughter struggled with picking out a name for our new grey kitten. She couldn’t decide between Sparky and Pickles. So our poor little new family member got stuck with Spickles. I maintain his name was actually Edward, because he deserved something with more dignity. But I mostly called him Mr. Handsome or My Sweet Boy, because he was both of those things.

He was an indoor cat, we live on a busy, busy road. But he and our other cat were always angling to get out. He shot out the back door like a rocket yesterday, as he has done before, never venturing farther than the yard. But this time he didn’t come home. My neighbor called me this morning. Mr. Spickles was lying in front of his house. He apparently had been hit by a car.

My heart is aching. He was gentle and affectionate and would climb on me and cling like a baby if he wanted some cuddling. If you rolled up a piece of crackly paper he would gleefully bat it all over the place. He loved to play with our Corgi (read about her here), they would chase each other back and forth through the length of the house. It added a zoo-like atmosphere at times, but was hilarious to watch. By the time Bella the Maniac Shih Tzu came along I think he just wasn’t up to her shenanigans. Or maybe he simply missed his old friend. At any rate, he definitely was slowing down.

I am so grateful to my neighbor and his friends. So kind and compassionate, they gently placed him in a box for me and carried him back to the house. If they hadn’t called, I don’t know when I would have found him. Their thoughtfulness eased the blow a little.

We will bury him behind the garage, next to Corrie, his racing cohort. Goodbye, Mr. Handsome, my sweet boy. Thank you for ten years of unconditional love.

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Memorial Day

2011-05-30T07:29:00.000-04:00

Praying that someday this will be unheard of.


The American Military Cemetery, Bayeux, France

They shall grow not old, as we that are left grow old:
Age shall not weary them, nor the years condemn.
At the going down of the sun and in the morning
We will remember them.

From "For the Fallen" by Laurence Binyard, 1914

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Lunch at The Circus

2011-05-11T15:27:00.000-04:00

Two of my favorite men took me out to lunch today. My son had to work on Mother’s Day, so we celebrated today. Considering we were dining with a four year old, we opted for The Circus, a drive-in that opened in 1954, the year I was born. I used to take my own kids there when they were little, it is a Shore landmark. They still have car hops! I had a great time, just listening to Shep’s chatter and talking with my son about books and movies, two of our favorite things.

As we were leaving, my son held the door for me and Shep said “Ladies first!!” Such a gentleman at four! I love these handsome guys so much! I am so lucky to have them in my life.

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My Personal Mother's Day

2011-04-17T08:57:00.000-04:00

Today, Sunday, April 17, 2011, is the thirty fourth anniversary of my becoming a mother. It is the thirty fourth birthday of my first born.

He was due April 1, so he was maddeningly late. Those last two weeks my mother, grandmother and aunt called me every day to see if there was any news. My aunt worked at the hospital where I was going to have the baby. If she called and I wasn’t home, she would call the Labor and Delivery floor to see if I was there. When I did finally arrive, the nurses all exclaimed, “Mrs. Cooper! We’ve been waiting for you!”

To say I was thrilled with my little boy does not even begin to cover it. He was a beautiful baby, pink and round. And so good! He rarely cried, slept like a log and solemnly took in the world with his big blue eyes.

He was a friendly, engaging toddler, interested in everything, talking non-stop, and always, always wanting to learn. When he was three he had me copy out the alphabet for him and show him the letters for his name so he could learn to write it. On his own he did this. Although the very first thing he wrote were the words “fire truck”, as that was his current obsession.

He was always mature for his years and a hard worker. When he was 13, again all on his own, he went to the local pizza shop and asked for a job. They gave him a broom and he has been working at some job or another ever since.

When he was twenty, he explored the country, working his way across the United States, from Maine, down the east coast to the South and across the South to California. It took him more than a year. I was worried sick the whole time he was gone, but I was so proud of him. Most people only dream of such an adventure, he actually did it.

He worked his way through college and law school, graduating with honors, and now is a respected attorney with a prestigious firm. He chose a lovely woman as his wife.

My sweet and funny little boy has brought me more joy than he will ever know. Nothing will ever change that.

As Robert Munsch wrote in Love You Forever…

“I’ll love you forever, I’ll like you for always, as long as I’m living my baby you’ll be.”

Happy birthday. Thank you for making me a mother.

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April 10, 2011

2011-04-10T22:21:00.000-04:00

Where is the time going? It seems as though it simply slips through my fingers and the next thing my children are grown and I am 56 and I wonder how on earth did this happen?

It was only yesterday I was a student in nursing school with four children and a husband. I went to school, managed the kid’s schedules, came home and made dinner for six every night, got the kids washed, homeworked and into bed and then studied myself.

I loved nursing school, even though it was unbelievably stressful and my instructor had singled me out for particular torture, always assigning me the sickest patients and holding me to impossible standards, criticizing everything I did. She couldn’t change my 4.0 average, though, or the fact that I had so much fun with my classmates or the affirmation I received from other nurses who worked with us. So on the whole, I loved it. And the homefront juggling? It just went with the territory, I didn’t think about it, I just did it.

I got my first job, like many new nurses, in a long term care facility. It was just a few blocks from the house, so I walked or rode my bike most days. I fell in love with my patients, 30 souls in varying stages of dementia. Some were silent and vacant, some anxious and frightened, some were simply cheerful and forgetful. The ones who had the worst dementia were always looking for their mothers. We had many patients who were from Scotland and would come to me wringing their hands in distress, telling me their mother was waiting for them in Edinburgh, or Aberdeen, or Glasgow, and they were late and could I please show them where the bus stop was. It is against the law to medicate these people enough to truly relieve their anxiety, so they spent their days miserable and worried. I started telling them I had gotten a message to their mother, or sister, or father, saying they would be late. It always calmed them down. Until they forgot again.

For my hard of hearing patients I made signs. Mary had been a nanny for her whole life. Something had apparently happened to one of her charges, although I never got the straight story because she would put her finger to her lips and say “Shhh! No one must know!”. From the pieces of her story that made sense, it may have been that the child drowned, but also maybe not. However, she obsessed about it. She was very deaf so when she came to me crying, I would hold up three signs I had written in big block letters and covered in plastic. I would flash them one by one as she slowly read them out loud in her Scottish burr, tracing the words with a finger: “Mary, calm down”, “Everything is alright”, and “I love you”. When she got to the last one she would always burst out laughing and hug me and say “Oh, dear, I love you too.” And she would be fine. For a few hours.

Sally was ambulatory and would sit on a chair at my desk saying over and over in a quiet cry “Help me. Help me. Help me.” She got a “You are safe” sign, that I put in her hands. When she remembered to look at it, or when I reached over and moved it into her vision, she calmed down for a little while before starting again.

I had great co-workers and became especially close to the Assistant Director of Nursing. It was she who appeared, looking absolutely stricken, in the door of the room where I was giving out meds one December morning. “Something happened?” I asked, thinking a patient had fallen. She nodded. “It’s not the kids.” she said. And I knew.

So then we were five. My husband had had a heart attack and was buried two days before Christmas. In a panic, I worked three jobs that first year, the nursing home, teaching childbirth classes and working part time for my pediatrician. I got a job as the nurse at our local newspaper and began my business career, working my way up the corporate ladder until I was in executive management in the healthcare field. I raised my kids, bought my own house, traveled, went back to school and got my Master’s and was happy, happy, happy.

When I noticed the numbness in my hands and feet, I didn’t think much of it. Maybe a pinched nerve. I never dreamed it meant losing everything I had worked for. I never imagined it meant a crippling, incurable illness.

Ok, so now I see that’s where the time has gone! Someone once told me about babyhood that the hours were long but the days were short. I think that is true for life as well. All these things took hours and hours to happen, but seem to have gone by in a flash.

I no longer work, although not for lack of trying. All the things that come with a generous paycheck are slipping away. My house will be gone soon, I cannot pay for it and I cannot take care of it anymore. I, who whirled through these years with the confidence of no boundaries, rarely leave the house. I can only wait and see where the future time will go.

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God Will Always Protect You?

2011-04-03T22:43:00.000-04:00

My daughter Elizabeth did this drawing for me over 14 years ago, when she was about nine. I have kept it on my desk ever since. Not only is it precious to me because her little girl self made it, but the message is such an inspiring one, a little boat bobbing around in stormy waters, safeguarded by the hands of God. It has been battered a bit over the years, but tape and a sturdy frame keep it preserved.

Like many other things that get lost in familiarity over time, I forget to really look at it. It blends in with all the other things that are always in front of me. But it caught my eye yesterday. I moved it down to be closer to me, so I can really read it every morning. The picture is a perfect analogy for my life right now, but I am struggling with the message. Without a job, becoming more disabled every week and in dire financial straits, I do not feel protected by God. I feel betrayed and abandoned. I try to remember that corporal things should not be so important, that it is what I do and how I live that really matters. But the prospect of losing everything I have worked so hard for is devastating. Maybe my priorities are skewed. However, we have to live in the real world and things like a job and a house do matter.

My life is filled with people who are very good to me, wonderful friends who truly care and affirm me in many ways. So for now I have to accept that is how God is protecting me. It is easier said than done, but I need to believe He speaks to me through them. While I feel overwhelmed and full of fear and grief, the message is, ultimately, everything will be alright.

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Sunday Brunch

2011-03-27T20:13:00.000-04:00

I belong to Tribal Blogs, a fun, dynamic, supportive collective of bloggers. Started by Jen of Red Head Ranting, it is a relaxed and friendly group. And they have great blogs. Most Saturday evenings a bunch of us meet online and chat about anything and everything. The exchange is fast and furious, almost always very funny. Last night someone likened it to being in a noisy bar, having to work hard to keep up because you are only catching half the conversations, the words come with such velocity. Remember, we’re bloggers: writers who need a lot of attention. lol

Some people can’t do Saturday evening for one reason of another. One of our group, Thomas at 101 Things in 1001 Days, had the brilliant idea of doing a brunch chat, but also adding a tutorial for making an egg/cheese pie by doing a live feed over his blog. I joined in this morning and was able to visit with my fellow bloggers while we made a yummy brunch main course.

Here is the recipe and pictures I took along the way:

1 16 ounce roll of breakfast sausage
1 package of ready made roll out pie crusts
6 eggs
1 tablespoon minced chives (optional)
1 15 ounce package of ricotta cheese
Salt and pepper

Pre-heat the oven to 425 degrees.

Kiss your granddaughter good morning (optional).

Have a mimosa (optional).

In a frying pan, cook the sausage until is crumbled and browned.

Line a 9 inch pie plate with one of the pie crusts. Drain the grease and evenly spread the cooked sausage in the pie pan.

Break the eggs one by one into the pie plate without breaking the yolks, five around the perimeter and one in the center.

Sprinkle with chives, salt and pepper. Spoon ricotta cheese over the eggs.

Cover with the second pie crust and pinch the edges to seal.

Make a few slits in the top of the crust to allow steam to escape. Bake for 30 to 35 minutes and allow to rest for approximately 5 minutes before slicing. Serve hot.

TA DA!

Easy peasy and it is delicious! Thank you Thomas and all my friends at Tribal Blogs, especially Jen who is the amazing driving force behind the whole thing.

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Paging Dr. House

2011-03-22T22:11:00.000-04:00

So. For four weeks I have been hacking my lungs out, with every muscle in my body aching and my nose running like a faucet. This cold and cough will not quit, causing me concern about my immune status. My left leg has been swollen again, which freaked me out on so many levels. Leg, ankle and foot swelling is a common symptom of congestive heart failure. So is shortness of breath, which I also had. Then on Saturday I noticed ominous red spots on my calf, each about the size of a thumbprint. I gasped. Venous stasis! This is where blood pools under the skin because of lack of circulation. It leads to horrific, non-healing wounds.

I dreaded going to the doctor and having my diagnosis confirmed. I cringed at the idea of hearing those words, getting that menacing sentence of imminent death. I am only 57!! I began picking out hymns for my funeral and thought about how sad everyone would be, which quite made me smile actually. And the thought of my eulogies perked me up no end.

At any rate, I finally dragged my miserable, doomed self to the doctor this afternoon and I sadly outlined my various dire conditions to him. I steeled myself for his alarm, for immediate placement in the telemetry unit (maybe even by ambulance, so perilous was my cardiac status), for tearful goodbyes with my children. Here is what he told me:

My “cold” is a sinus infection, which will be better in a day with antibiotics. It is all the coughing that is causing me to feel short of breath. It hasn’t gotten better because I need antibiotics.

My swollen leg is most likely a side effect of one of the medications I am taking. He is not concerned as it only happens occasionally and improves immediately when treated.

The red spots are…a rash.

He withheld comment on the fact I was a lunatic.

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The Feast of Saint Patrick, My Grandmother's Day

2011-03-17T09:17:00.000-04:00

I miss my grandmother. I miss her with an ache that never goes away.

I miss her now and I have missed her every day since August 6, 2000, the day she died at the age of 95. Even 95 years weren’t enough.

Grandma, Katie Daly she was, came here from County Roscommon, Ireland in 1923 at the age of 18. St. Patrick’s Day, a day I always sent her flowers and at least talked to her on the phone, if not went for a visit, was a special day for her. Make no mistake, my grandmother was a fiercely loyal American. She told me over and over as a child that the United States was the greatest country in the world, that you had opportunities here you had nowhere else. I once said, “But Grandma, Ireland is so beautiful.” And she replied tartly “You can’t eat scenery, dear.” It was only later I learned details of how hard it was growing up in rural Ireland in the early 20th century. So, she loved America, but on St. Patrick’s Day, she was all Irish again.

This day makes me miss her more and always will. I miss her wisdom, her wry wit and dry humor, her stunning intelligence and her sense of fun, her perpetual youthfulness, her beauty, her dignity and grace. Most of all I miss her unconditional love, rarely spoken, but expressed in so many ways.

Beannachtaí na Féile Pádraig, Grandma! I love you. Till we meet again.

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Hearts with the Japanese

2011-03-15T10:19:00.000-04:00

No one can look at the devastation and ongoing tragedy in Japan without being moved. While thousands have perished and that is terrible enough, the survivors are facing deprivations of food, water and shelter. Temperatures are in the freezing range and today it was snowing in the hard hit areas. Couple that with the nuclear threat and the scope of the disaster is overwhelming.

Sachiko, a fellow blogger, is from that area of Japan and still has family there. On her blog she implores the public to help in whatever way they can, Tea Rose Home. And she has asked that other bloggers get the word out.

Financial contributions to reputable organizations seem to be the most efficient method of assisting. Even donations as little as $10 are welcome.

Here are some of the charities that are organizing to help:

The American Humane Association

The International Red Cross

AmeriCares

The Salvation Army in Japan

Doctors Without Borders

Save the Children

If you can do nothing else, whatever your belief system, please offer prayers or thoughts of good will to the people of Japan.

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Deserving a Peek

2011-03-11T11:06:00.000-05:00

I realized as I was doing my daily web perusal that many of the blogs I read regularly really deserve a plug.

There is my original list of favorites if you scroll down on the right side. Most of them are blogs I was introduced to when I first became familiar with the blogging world over three years ago. Every one of them is still worth a look, they are marvelous. But I have found so many great new ones as well. I must point out there are many, many wonderful blogs out there that I read frequently. Almost too many to list. This is not a comprehensive run down by any means and I will try to note some of my other favorites over time.

Scouting New York

This kid (he is younger than some of my children) is 1) freaking adorable, 2) smart and funny and interesting and 3) has an ongoing love affair with both New York City and history. What an irresistible combination! He is a film location scout by profession and has parlayed the fascinating things he sees in the line of his work into this fabulous blog.

Red Head Ranting

Hey, in my book ranting is as much fun as whining.

This particular redhead is my friend Jen, a cyber-whiz if ever there was one. She has this funny blog, she is writing a book, she created a professional blog network, Tribal Blogs (lots of great blogs listed there, check it out), and she has organized an exciting blog conference scheduled for this summer. Oh and she is smart and really, really nice.

Beetle’s Memories ‘N’ Ramblings

Even if I weren’t an Anglophile, I would find Beetle’s slices of UK life delightful. Beetle is fortunate enough to be a member of a large, warm extended family. The charming stories she tells of her late parents are touching and make you realize this ostensibly ordinary couple was, in fact, quietly remarkable. Illustrated with her own drawings, altogether an uplifting and fun peek into a wonderful life.

The Maaaaa of Pricilla

Pricilla is a blog writing goat, courtesy of her Publicist. She tells of her barnyard adventures and companions and about the fantastic Happy Goats Soap her Publicist makes and sells here on Etsy. I can attest to the fact that the soap is awesome. I can also attest to the fact that Pricilla’s Publicist is awesome and one of the kindest, most supportive Internet friends I have. She blogs for herself at Broken Teepee. A former Jersey Shore native, now situated on a farm in Montana, it is Patty who facilitated getting a new free bathroom sink for my impoverished self. She is a loyal reader and commenter AND makes amazing jewelry, which can be found here.

Weird Web Today

Ok, so yesterday's post is about cow farts. That might not seem the most promising introduction to her talents. But this blog is by Diana Fasanella, a long time columnist for our local newspaper. In the paper she was bright and witty and often gave me a chuckle. Well, Diana wasn’t chuckling when after 18 years she was part of a “work force reduction”. Can I just say corporate life SUCKS? But not letting grass grow beneath her feet, she is launching several projects, including this blog. She has another in development that will deal with life as Nana. This smart woman deserves to be read, if for no other reason than her “Rant” statement on Weird Web Today: “This blog is dedicated to all the hard-working, loyal employees who big business tossed aside so executives can continue to collect their fat bonuses.”

As one of the big business victims myself, I say amen sister.

This is what I had to say about my former employers when I was laid off last year:

The fact that the layoffs were due to an epic level of mismanagement is especially ~~enraging~~ disheartening. Some people with a lesser character might consider a slow, painful, perhaps fiery, death too good for the people responsible. I, however, choose the high road. You know, the road above where you actually get to watch them die.

ha ha ha

(You can read the whole hilarious post here.)

So anyway, there are a few fun, worthwhile blogs to check out. Enjoy!

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Keeping Busy

2011-03-08T12:33:00.000-05:00

While being out of work has had devastating consequences, and feels pretty darn awful too, I have been keeping as busy as possible.

I've been doing a lot of writing, mostly for Yahoo's Associated Content on health news. It is fun and challenging and I make about .05 cents for every kabillion hits each article gets, so far to the tune of about $1. Woo hoo!!

If you are so inclined, you can find my stuff here:

http://contributor.yahoo.com/user/911950/marie_cooper_lpn_ma.html

Become a fan, Stumble me, Tweet me, leave a comment, help me earn that next .05 cents!

I have been doing a lot of sewing too and have several unfinished projects. Here are some of the things I have been working on.

I was going to make this into a pillow, but now I am thinking maybe a wall hanging:

I embroidered eyelet and then added a fabric flower. This will be a little pillow:

This will be a holiday pillow:

A sunflower surrounded by leaves. I am not sure what this will be. Maybe an insert into a tote bag?:

A vintage design that reminded me of my home from the same era. I will frame and keep this one:

My motto:

A scarf I made for myself out of super soft cotton, in yellow, my favorite color. Still putting the fringe on:

A hat for a friend's nephew, but I don't like the way it turned out. So...

I'm making a whole new one out of cream colored cotton.

I have more things I've finished and have for sale on Etsy. Check out my site if you need a nice gift or just want to treat yourself. :)

http://www.etsy.com/shop/stitchesthroughtime

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Getting Springy

2011-03-04T06:43:00.000-05:00

Time to de-winterize my blog design and think spring.

I have been laid up with a miserable upper respiratory thing but hope to catch up soon. Although there is nothing really to catch up with. Hopefully something hilarious and entertaining will happen in the next few days.

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Afternoon with Shep

2011-02-18T23:28:00.000-05:00

Spent the afternoon with my sweet four year old grandson. He cracks me up. He sits next to me while I am writing on the laptop and just chatters away. He talked about how he loved his Mom. I told him when his Dad was his age, he always said he wanted to marry me when he grew up. Shep looked at me with amazement and said “Now that’s just weird.”

Guess he doesn’t feel quite the same. And time clearly has not been kind to me.

The rest of the afternoon:

He drank juice.

He played with a flashlight. (“Nana, I want to go someplace dark.” For a horrible minute I thought he was having a breakdown.)

He had a Rice Krispie treat.

He played kiddie computer games.

He had a lollipop.

He played with Playdough.

He had ice cream.

He watched TV and played with Legos.

By the time his dad came to pick him up, he was tired. “Come on, bud, pick up the Legos.” my son said. I was putting Shep’s sneakers on and he whispered to me, “I don’t want to pick up the Legos.” So I whispered back to tell his Dad I was playing with the Legos, so I would pick them up. Sometimes you need your Nana to cover for you.

With a totally straight face he said to his father, “I wasn’t playing with the Legos, it was Nana Cooper. But she needs help picking them up because it is hard for her to walk. So you have to do it.”

Is this kid brilliant, or what?

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Happiness

2011-02-13T08:12:00.000-05:00

It is a constant pursuit.

When my oldest son was young, he worked in our local grocery store. The town we lived in had a high population of seniors and most of them preferred to shop at this old-fashioned little corner store, as they didn’t have to drive and the level of service was high.

One day I was in there to get milk. It was the peak of the lunch rush and both registers were going a mile a minute. The lines, full of little old men and women, stretched to the back of the store. My son didn’t know I was there and I watched him deal with one elderly person after another, unfailingly polite and helpful. I was glowing with pride. Because each of these people was making some demand in a quivery little voice. Double bag my groceries. Oh, don’t squash my strawberries! Put this on my tab. I thought this soup was on sale. Is this bread fresh? And finally, do you have any happiness today?

Uh oh. Dementia.

I watched my son look under the counter and reply, “No, it looks like we’re all out.” “Wow”, I thought, “he really goes above and beyond!” “Hey Heather” he called to the other cashier, “Do you have any happiness over there?” Heather looked. “No, I’m all out.” “Try again tomorrow”, Ryan said to the little old lady. She thanked him and went on her shaky little way. “Holy cow!” I thought. “Mr. Brown has them so well trained that they will go to any length to humor these poor old people.”

When I got up to the counter I had tears in my eyes. “Ryan, I am so proud of you that you were so nice to that poor demented old lady looking for ‘happiness’, that you humored her so nicely, even looking for ‘happiness’ under the counter.”

He paused for a minute and then rolled his eyes. “Happiness is a magazine, Mom.”

Oh.

Well, he was still very polite.

Happiness Magazine

______________

I have had a dearth of happiness in my life in the past few years, stressed out as I have been by one disaster after another. Even though my life has crashed and is burning, I know that true happiness is a state of mind and a choice. So I have been working on being consciously happy, without being simple minded about it.

I got a copy of The Happiness Project by Gretchen Rubin. I have to say, the author makes some very good points about choosing happiness and deliberately living in a way that limits negativity. She has some very good ideas. But I can only read it in small increments because there is a persistent tone of ‘I am so wonderful and let me tell you how wonderful I am’ that gets on my nerves after about 15 minutes. Although I will fully acknowledge, that could just be me and I am Happiness Teflon. I also could just be jealous of the fact that she is young, successful, lives in a fabulous Manhattan apartment with a fabulous husband, fabulous children, with fabulous in-laws around the corner and, apparently, is fabulously happy.

One of the things I decided to do early in reading the book was to make a “Happiness Quilt” for myself. I got a pattern for a small lap quilt that just called for six quarter yards cut creatively. Yellow is my favorite color. So I went to fabric store and grabbed a combination of pre-cut yellow and blue quarters. Now, because I have a limited time that I can be on my feet, I didn’t have as much time to peruse the fabric selection as I would have wanted. So I ended up settling before I keeled over.

The quilt came out nice and it made me somewhat Happy, but not Happy enough.

Happiness Quilt I

I found what I wanted on line. Gorgeous, flower splashed cotton in all shades of yellows. I bought a few extra quarter yards to make the quilt a little bigger. And I picked a great cabbage rose fabric for the backing. For someone like me, who craves symmetry and order in my sewing, this cacophony was a leap. But I was sooo happy with the results after I pieced the top together. My sewing machine cannot handle quilting, it doesn’t have the capacity. So instead of hand tying it, I decided to hand quilt it and then wrap the binding fabric around and hand sew that as well.

It took me longer, but it was worth it. The quilt has a myriad of flaws, it is really really hard to squeeze the right amount of cuts from a reluctant quarter yard. But I love it for its imperfections too. It is big enough to cuddle under to read or nap or just contemplate the process of Happiness.

Happiness Quilt II

Quilt back

Close Up

I now have the Happiness Quilt I wanted. Next to acquire the Happiness itself.

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Oh, the Ignominy

2011-02-10T10:55:00.007-05:00

My daughter was upset and hurt by this post, so I have taken it down out of respect for her feelings.

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Because...

2011-02-03T21:06:00.000-05:00

Because it is simply lovely. And we all deserve something lovely on a cold, dark February night.

For my e-mail readers:

http://www.youtube.com/watch?v=wlxVTpEyMEw

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A New Princess in the World

2011-01-30T01:44:00.000-05:00

Welcome to my gorgeous new granddaughter, Madailéin Elizabeth, born January 29, 2011. Congratulations to her mommy and daddy, who will be, indeed already are, spectacular parents.

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In Honor of Jackie

2011-01-20T11:10:00.000-05:00

January is the birth month of Jacqueline Du Pre, the dazzling English cellist who died of multiple sclerosis in 1987 at the age of 42. I am cheating by posting this on both of my blogs, but I like her to get as much exposure as possible.

Jackie was a genius and her playing is still revered today for its depth and creativity. This is all the more remarkable considering MS ended her ability to play when she was only 28 years old. She did, however, continue to teach and share her brilliance with many, despite the relentless progress of her disease.

This recording of Elgar is a treasure. Daniel Barenboim, who she married in 1967, is conducting. Especially for anyone who is used to how he looks now, he looks like a little boy in a borrowed, ill-fitting tux. As much as I admire his musical talent, I can never look at him without remembering he had two children with another woman while Jackie was still alive. Maybe I am being too judgmental, but honestly, what a dog.

http://youtu.be/UUgdbqt2ON0

A movie about Jackie and her sister was made in 1998. It generally is a silly, over-the-top melodrama. But there is one scene that I post every year, it is so true to my experience. For me, it captures exactly how it feels every time it hits home how much MS has stolen from my life. My career has been destroyed. My independence is gone. My relationships are all altered by this horrible disease. I cannot overstate the devastation of knowing each day brings me a little closer to total dependence. What I would give to have my old life back, to be able to run errands, get up and go to work every day, go for a walk after dinner! Even to be able to make dinner or clean the house or do laundry, all things that I took for granted and I am unable to do any longer.

http://www.youtube.com/watch?v=TpN41toUv-w

I certainly never, ever thought I would develop something like MS. I vividly remember studying it in nursing school and thinking, “Phew, thank goodness I’ll never get MS!” Silly me. I already had it. And even after I was diagnosed, I thought, “Oh, it won’t affect me too much. I will have MS Light. Because I am not the type to get sick. That is for others.”

Who knew I would be one of the others?

Granted, perception is all. If I perceive I am limited, I am limited by my own definition. I do still enjoy many things, especially the company and support of my wonderful friends. But the reality of loss is still a painful fact.

So happy birthday, Jackie. Thank you for the gift of your music and the example of the life you led.

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Wise Words: On Healing, Not Wounding

2011-01-14T09:54:00.000-05:00

I was profoundly touched by the leadership of our President, who said, among other things, on Wednesday:

…sudden loss causes us to look backward – but it also forces us to look forward; to reflect on the present and the future, on the manner in which we live our lives and nurture our relationships with those who are still with us.

We may ask ourselves if we’ve shown enough kindness and generosity and compassion to the people in our lives. Perhaps we question whether we are doing right by our children, or our community, and whether our priorities are in order.

We recognize our own mortality, and are reminded that in the fleeting time we have on this earth, what matters is not wealth, or status, or power, or fame – but rather, how well we have loved, and what small part we have played in bettering the lives of others.

I know I am guilty of not having done enough, of letting days and years drift by with good intentions but, sometimes, scant action. I have been thoughtless. I have not always been the parent my children deserved. Circumstances have conspired to leave me now in a position of being able to do very little physically. But I can still consider “…the manner in which…” I live my life.

I will continue to support practical and reasonable gun control legislation, for one thing. No sportsman needs a semi-automatic hand gun. And there must be better controls in place to prevent the mentally ill from having such easy access to firearms. Over 30,000 people are killed by guns in the United States every year, but for some reason there is little outrage.

Ten years ago I took part in the Million Mom March in Washington, D.C. It was an awe-inspiring and sobering day, yet the movement has simmered down to a whisper, although James and Sarah Brady have remained tireless in their mission (http://www.bradycampaign.org).

According to the CDC, in 2007, (http://webappa.cdc.gov/cgi-bin/broker.exe) 65 children under 14 died in firearm accidents. Two hundred and forty nine were murdered by guns. And 53 children between 10 and 14 committed suicide with a gun. The next age range is a ten year one, 15 to 24, with 53 accidental deaths, 4669 murders and 1900 suicides by firearms. How is this accepted in our society?

As President Obama reminded us, our time on earth is fleeting. It shouldn’t be shortened by senseless, preventable violence.

_____________________________

The Peaceful Stone House is a lovely, gentle blog written by Dana from Canada. It is always worth a visit for a brief respite from the craziness of the world. Dana is sponsoring a wonderful giveaway connected to her business, The Great 1870 Flannel Nightie Co. (http://www.flannelnightie.com). Check out her blog for details on winning a cozy treasure.

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Blizzard, Part Two!

2010-12-31T09:53:00.000-05:00

Well son of a gun.

It turns out it WAS news after all. It was news because our state and municipalities totally dropped the ball on the snow removal, resulting in people at the Shore still trapped in their homes, more than four days after the storm ended.

The blizzard was effectively over by Monday morning. By Wednesday night, our street had still not seen a plow. There was a six foot drift covering my van in the driveway and a solid three foot bank of snow from one end of the street to the other.

As the days slid into Wednesday with no escape in sight, every few hours my daughter, who is eight and a half months pregnant, would clutch her chest and cry “We’re going to run out of food!! I know it!!”. Then we would both laugh. But the laughter was getting pretty thin after 60 hours, down to about a half a cup of milk, no butter and one frozen chicken. I had to miss my MS treatment because I couldn’t get to the oncologist’s office. I started making feeble jokes about being Donner, party of two. But it actually was getting worrisome.

Her Significant Other was on snow duty at the firehouse in Ocean Grove, a tiny little community here at the Shore. He was completely trapped there for over 72 hours. Nothing with wheels could move at all in the snow and the firemen spent most of their time digging out other emergency vehicles that were stuck. One rescue call had to be done with the patient being pulled through the snow in a sled-like basket. As of Thursday, most of that town had not been touched by a plow.

Local politicians were trying to deflect blame (there was too much snow to remove) or pass the buck (the state didn’t do its job properly), but the bottom line is the entire situation was an unacceptable disaster.

Here is one article in the local paper: http://www.app.com/article/20101230/NEWS/101230061/Neptune-digs-through-the-night

So I filled the time doing what I had done on Sunday:

I read.

I baked cinnamon bread.

I finished a baby quilt top I am making for a friend, but couldn't complete the whole thing because I am all out of batting.

I made… a patchwork thingie. I had in mind a patchwork prayer shawl, as a change from the knitted ones I make. While I was testing it against my shoulders for size, The Critic appeared in the doorway and said “Why are you wearing a table runner?”. So presto, it was a table runner.

We are finally shoveled and plowed out. I may venture to, where else but the fabric store? But the roads and streets are still dicey, so I will play it by ear. One broken shoulder is more than enough, thank you very much. If I don’t get more fabric, I am sure I will find something to do over the holiday weekend.

I wish all of you a wonderfully peaceful, joy filled and healthy New Year!!

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3Six5

2010-12-29T07:33:00.001-05:00

Around this time last year I read about a project that was being launched by two young men in Chicago. Their idea was to invite 365 people to write about a little slice of their life, one for each day of 2010. The essays were limited to 365 words and kept to observations related to their specific day.

I applied, was accepted to be one of the participants and was assigned the date of December 24. So here is the site, you just have to scroll down for my essay:

http://the3six5.posterous.com/

We were invited to include a photo as well. With my usual tendency to be out of control, I took 63 pictures of my living room. And then, of course, couldn’t decide which one to use. This is a worldwide project! I couldn’t use the one that shows the bare patch on the back of the sofa where the cats have sharpened their claws for nine years. I couldn’t use the one that shows the flaws in the woodwork. This one made the living room look too long and skinny. That one made it look like it was ridiculously over-decorated. Should I have lit a fire in the fireplace?!? And on and on and …

Good thing you were not ruled out of the project for being certifiably insane.

At any rate, there may be a book resulting. But even if there is not, it was an honor to be part of it. The stories by the other writers are wonderful, simple vignettes about lives all over the world.

They are currently taking applications for the 2011 project. I would highly recommend taking part, or at least following the essays. It is such a great reminder of how unique we all are and yet have so much in common as human beings.

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Blizzard!

2010-12-27T01:44:00.001-05:00

New Jersey is buried under about a foot and a half of snow this morning, which is routine in many parts of the world but is a stop-the-presses event here at the Shore. This is silly, because a) snow happens in winter, b) snow slows down transportation, c) lots of snow slows things down A LOT and 4) only idiots go out in the snow unnecessarily. None of this is news.

My front steps

From my front door, looking east, 12 blocks from the ocean

My side yard

The patio and part of the garage

Car abandoned last night by some knucklehead smack in the middle of the intersection

More patio and garage

The trellis on the patio

I love the snow and really enjoyed my snow day. I did all the things I used to do when the kids were little (minus getting them dressed and undressed for the snow 1200 times over the course of the day!). I baked bread, I made a cute, cuddly flannel patchwork blanket for the new baby, made a pot of soup and I read. Unfortunately, except for the reading, I completely overdid it and was a crippled wreck by 7 p.m. But at least I have something to show for it.

____________________________

I recently found evidence that a mouse had been in the house. But no worries, I have cats!!

Yes, that is the kitchen counter. Sorry, I have no standards anymore.

As for our visitor? Not another sign. I think they were probably disgusted by the lack of a challenge.

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Yes, Virginia...

2010-12-25T10:08:00.002-05:00

Several years ago there was an article in the New York Times (here) that captured my attention and my tendency to wax nostalgic about the past, especially New York City history.

The article was about the former home of Virginia O’Hanlon, who at the age of eight, in 1897, wrote a letter to the editor of the New York Sun newspaper. The editorial answer became the timeless “Yes, Virginia, there is a Santa Claus…” Virginia’s childhood home on West 95th Street, once an elegant, upper middle class townhouse, was a boarded up ruin by 1967 and was in even worse condition 20 years later, when this article was written. At that time it was the subject of a complicated and divisive legal battle between developers and the city. (It subsequently was incorporated, along with two adjacent buildings, into a school, rendering it unrecognizable.)

The article and heartbreaking picture caused me to imagine a time when Manhattan was primarily a residential area. The lower part of the island was the bastion of capitalism, but the majority of the city was comprised of small neighborhoods like the one Virginia lived in with her physician father. Granted, there was an incredible and unconscionable dichotomy between poverty and wealth, even worse than it is now. But the idea of family homes, windows warmed with lamplight, the sound of hoofs clopping down the street, is irresistible, especially compared to the contemporary blare and frenzy.

I cannot find the reference, but I remember reading about a visiting Dutch royal at the time of the bicentennial. As he was touring Manhattan, he asked to see something from the original Dutch settlement. He had to be told there was nothing remaining. “You Americans are very thorough.” he remarked drily. I remember that comment frequently when I am in the city. Progress is great, but so, so much is gone forever, to our detriment.

But Francis Church’s response to Virginia in The Sun does survive and his words, printed on September 21, 1896 (what would become my birthday fifty seven years later), are just as pertinent today as ever:

"DEAR EDITOR: I am 8 years old.
"Some of my little friends say there is no Santa Claus.
"Papa says, 'If you see it in THE SUN it's so.'
"Please tell me the truth; is there a Santa Claus?

"VIRGINIA O'HANLON.
"115 WEST NINETY-FIFTH STREET."

VIRGINIA, your little friends are wrong. They have been affected by the skepticism of a skeptical age. They do not believe except [what] they see. They think that nothing can be which is not comprehensible by their little minds. All minds, Virginia, whether they be men's or children's, are little. In this great universe of ours man is a mere insect, an ant, in his intellect, as compared with the boundless world about him, as measured by the intelligence capable of grasping the whole of truth and knowledge.

Yes, VIRGINIA, there is a Santa Claus. He exists as certainly as love and generosity and devotion exist, and you know that they abound and give to your life its highest beauty and joy. Alas! how dreary would be the world if there were no Santa Claus. It would be as dreary as if there were no VIRGINIAS. There would be no childlike faith then, no poetry, no romance to make tolerable this existence. We should have no enjoyment, except in sense and sight. The eternal light with which childhood fills the world would be extinguished.

Not believe in Santa Claus! You might as well not believe in fairies! You might get your papa to hire men to watch in all the chimneys on Christmas Eve to catch Santa Claus, but even if they did not see Santa Claus coming down, what would that prove? Nobody sees Santa Claus, but that is no sign that there is no Santa Claus. The most real things in the world are those that neither children nor men can see. Did you ever see fairies dancing on the lawn? Of course not, but that's no proof that they are not there. Nobody can conceive or imagine all the wonders there are unseen and unseeable in the world.

You may tear apart the baby's rattle and see what makes the noise inside, but there is a veil covering the unseen world which not the strongest man, nor even the united strength of all the strongest men that ever lived, could tear apart. Only faith, fancy, poetry, love, romance, can push aside that curtain and view and picture the supernal beauty and glory beyond. Is it all real? Ah, VIRGINIA, in all this world there is nothing else real and abiding.

No Santa Claus! Thank God! he lives, and he lives forever. A thousand years from now, Virginia, nay, ten times ten thousand years from now, he will continue to make glad the heart of childhood.

Merry Christmas everyone!! I send you all the warmest wishes for a peaceful, joyous holiday!!

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The Sounds of Christmas

2010-12-19T11:00:00.001-05:00

Ho ho ho

I am a total cornball who freely admits to loving Christmas music. I honestly could listen to it all year long. Most of it evokes a sense of nostalgia for what is past: those boisterous childhood Christmas’ at my grandparents and fond memories of so many of the people I loved who are no longer here, my grandparents themselves, aunts and uncles and my closest-in-age cousin, Michael, who has been gone for 13 years and I miss terribly.

When I was about eight I got a record player for Christmas. Before my brother and I came out for our presents, my father put a 45 of Bing Crosby singing White Christmas on it so it was playing when I came into the living room. My dad was only in his 20’s at the time. That song will forever remind me of him as a young man and how he made that touching gesture.

Bah Humbug

But there are some Christmas songs that I could happily live without hearing ever again. They fall into three categories: 1) Annoying, 2) Mind Numbingly Obnoxious and 3) Jaw Dropping.

Annoying:

Little Drummer Boy: I could so do with never hearing “rump ump ump blah blah blah” ever again. Oy, take that drum away from that kid. Winner for the most bizarre duet of this song? Bing Crosby and David Bowie. Crosby died the same year it was recorded. Probably of embarrassment.

The Twelve Days of Christmas: I always find I want someone to shoot me before even the third day rolls around. And around and around and around…

I’m Getting Nothing for Christmas: I would recommend institutionalizing this child and sterilizing the parents.

Runner Up’s: Last Christmas by Wham; Rudolph the Red Nose Reindeer (because hearing it 2,000,000,000 times in my life is 1,999, 999, 999 times too many); I Saw Mommy Kissing Santa Claus; All I Want for Christmas is My Two Front Teeth.

Mind Numbingly Obnoxious:

Dominic the Donkey: Honestly, who thought this one up?! “Hee haw, hee haw”?!? Yep, those are always the first words that come to my mind when celebrating my Savior’s birth. I can only imagine the nightmare this song caused in school for any poor kid named Dominic.

Grandma got Run over by a Reindeer: Who says to themselves “Nothing says Christmas like a musical tribute to alcoholic white trash”?!? In actuality, I believe the author of this song had some heavy duty hostility issues related to their grandmother.

The Christmas Shoes: Holy Mother of God, how could anyone ever think this was a good idea for a song?!?! And then record it?!? And then play it?!?! Ugh, this is a song that makes me hate everyone.

Runner’s Up: Santa Baby; John Denver’s Please Daddy Don't Get Drunk This Christmas.

The winner for Jaw Dropping:

Do They Know It’s Christmas?: Um, first of all I would have to say NO you idiots of course they don’t know it’s Christmas as most of the indigenous peoples of Africa ARE NOT CHRISTIAN!! Unless of course we went in and mucked about with their culture. But for most of the people who were supposed to be helped by this recording, Christmas is a pretty abstract concept.

“And there won’t be snow in Africa this Christmas”. Well thank freaking God. Way to mess them up even more, unless they are on top of Mt. Kilimanjaro or something.

“Raise a glass for everyone…underneath the burning sun”. Oh. My. God. This is where I begin to wonder if they were just having us on. Maybe all these artists got together, snickering, and said “Let’s see how bad we can get and still have those yahoos buy it, hee hee hee.” It is the only reasonable explanation for the absolute worst line of all…

“Well tonight thank God it’s them instead of you!”

WHAAAAT?!?! Not “If only it was no one suffering like this.” No, it’s “Phew!” (sucking down a cold one) “Thank God it’s those ignorant heathens and not me!! Wooo-eee, dodged that one. Thank you God!!”

All these little ditties tell me one thing: there are a lot of seriously disturbed songwriters out there.

______________________

Of course this list is subjective (although I cannot believe ANYONE likes these songs!!). Because two of my favorites are on many people’s ‘hate’ list: Merry Christmas Baby and Santa Claus is Coming to Town, both by Bruce, naturally.

Here is “Santa Claus”, recorded in Passaic, N.J. on 9/20/1978, the day before my 24th birthday. Classic E-Street Band! I was not there. :(

For e-mail readers: http://www.youtube.com/watch?v=yErhglOXIxM

“Merry Christmas Baby” with Bruce AND Conan!!

For e-mail readers: http://www.youtube.com/watch?v=wi9kvO2zL2E

Merry Christmas baby!

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A Christmas Angel

2010-12-18T07:44:00.000-05:00

It is not news to those of you who read this blog that ~~my entire life~~ the past few years have presented some challenges.

Most recently, one of my beloved children has been upset about something. That is distressing by itself. But in this case, they have decided that they need to distance themselves from me as part of their coping strategy. I have really suffered with this, having a hard time accepting this choice. In fact, I am inconsolable. Without exaggeration I can state this is the worst thing that has ever happened to me. But after months of agonizing and begging, I have decided the only way I can deal with this is to let it go and hand it over to God. I am trying hard to appreciate the fact that it is not just about me, that my child needs this and I must respect their decision.

However, being respectful does not preclude feeling as though my heart has been ripped out of my chest. Being respectful does not stop me from crying constantly. Being respectful still leaves me feeling like a miserable failure as a mother. I keep praying ‘Thy will be done’, but I am all too human in my anguish.

This is what I have been carrying and why I have not been keeping up with my blogs. Or much else. It has simply been too hard. Everything, including breathing, feels too hard.

Enter the Christmas get together planned by my high school classmates, a rollicking bunch of really kind, funny people. I do not want to go anywhere. But I had committed to showing up, so I force myself to go, unable to imagine how I am going to socialize without howling my grief. All I can think about is my child and how much I miss them.

When I get there, wrestling with my walker, I am warmly embraced in affection and caring. We exclaim at how little some have changed, how great it is to see everyone and we catch up. Santa, looking suspiciously like one of my classmates, appears. I am trying hard not to cry, but I am surrounded by so many fond friends that I am able to keep it together.

About an hour into the evening, a woman appears at the end of my table. One of my classmates is pointing us out one by one. Kathy says my maiden name and the woman shoots out her arm, pointing at me. “You!! I have to talk to you!!”

She squeezes through the chairs and throws her arms around me. And tells me how much my blog means to her!! I recognize her now, a sweet girl I haven’t seen since high school days, now a bubbly, enthusiastic grown woman. As we talk, she shares some of the difficulties she has been facing in her own life. Very, very hard stuff. Heartbreaking. But she describes these things with a wry sense of insight and acceptance, without a shred of self pity.

She is so complimentary about my writing that I feel myself blushing. She tells me the most incredibly humbling thing: that my words have provided her not just laughter, but sustenance. Sharing my experiences has helped her, has even been inspiring. I am awestruck. I know people have enjoyed my writing and my goofy sense of humor, but this is the first time I am presented with a flesh and blood person who tells me I have made a difference in her life. “You must keep writing!” she insists.

As we talked, I felt the slightest thread of hope rise up in me. And a sense of purpose. Someone I love deeply has absented themselves from my life, but my life is not entirely worthless. I touch other people with my words. And here is someone right in front of me who is affirming and grateful…for me! She offers wise and comforting observations as we chat and she makes me laugh. She is an emphatic bundle of positive energy. I see this as a gift from God, true light in a dark night. A messenger. An angel.

I am still desolate. But today it is a little easier to draw a breath. I am so thankful for the comfort of old friends and for my sharp, exuberant, encouraging angel.

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It's Coming On Christmas

2010-12-07T06:23:00.001-05:00

Time to change my template. For some reason, though, since Blogger changed their templates, mine do not fit properly. Must work on that.

Here is Joni Mitchell singing River.

For my e-mail friends:

http://www.youtube.com/watch?v=GpFudDAYqxY

P.S.: In case you didn't guess by what you are seeing, I love snow.

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Sink-ronicity

2010-11-27T10:12:00.000-05:00

I know, it is a terrible pun. What puns aren’t terrible? (Did you know that the word ‘synchronicity’ was coined by Carl Jung? Me either!)

This is a long overdue post regarding the resolution of my Great Sink Disaster of 2010.

You may remember this summer, while innocently brushing my teeth, I knocked a cup out of the medicine cabinet, which proceeded to shatter my bathroom sink. Only me. So I whined and wrung my hands and wept. You know, real productive coping methods.

A dear online friend has a real life friend who works for American Standard, the plumbing fixture company. AND SHE ARRANGED FOR ME TO GET AN ENTIRELY NEW SINK FOR FREE!!!

I even got to pick it out!

My beautiful new sink arrived several weeks ago and my friend Peter installed it.

Ta da:

Thank you Nora at American Standard and thank you American Standard (linked here; in business for over 130 years!) for your marvelous, generous gift. At a tough point in my life, people who don’t even know me made this wonderful gesture. I cannot say enough good things about Nora and the people she works for. I am so, so grateful.

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Slinking Back, With Thanks

2010-11-25T11:14:00.000-05:00

BACK: I am tiptoeing shamefaced back into the blogosphere after being MIA for a few weeks. The concerned inquiries I have received are touching and humbling. Thank you so much. I have been sick, I did have a minor fall, but mostly we have been preoccupied at our house with a baby shower and an engagement and sewing like mad for a craft show. So days spun into weeks.

See:

Baby Shower

Engaged!


Crafty Thingies

THANKSGIVING:

I am thankful today for the many faithful friends I have through this blog and in real life.

I am thankful that MS, while taking its toll, has not snuffed all the life out of me yet.

I am grateful that despite being out of work we still have food on our table and a roof over our heads.

But more than anything I am grateful for my four children. We have had some rocky patches, and, I suppose, will continue to, but the most joyful, proud, purely happy moments in my life have been because of them.

Thank you, God, for all of this.

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Anniversary

2010-10-30T11:35:00.001-04:00

Thirty four years ago today, at 11:30 a.m., in the Mansion Chapel at Georgian Court University, I was married. I was 22, Dennis was 23 and we had no idea what we were getting into. Which I guess was a good thing.

It was a beautiful Fall day. At the reception, at Peterson’s Sunset Cabin, we danced to the dulcet tones of the Moon Misters. It was a really fun wedding. Everyone had a good time.

HOW THINGS HAVE CHANGED

Peterson’s, which was a Shore landmark for over 50 years, has been closed since the 1990’s. This blogger captured it perfectly, including haunting pictures of the abandoned ruin it is today, http://www.lostdestinations.com/peterson.htm.

Dennis died in 1993, so this year he is gone exactly as long as we were married. So unimaginably sad. He never saw our children grow up or got to meet his grandson. My son brought my grandson to the cemetery instead.

I don’t think students are allowed to get married in the Mansion Chapel at Georgian Court anymore, although I may be wrong about that. The Mansion Chapel, originally the conservatory in the George Gould mansion, is so much prettier than the stark Student Chapel on campus.

But the relaxed informality of the Mansion, where I actually lived as a senior, changed forever the afternoon someone walked off with a priceless Tiffany lamp.

AND THE SEASONS, THEY GO ROUND AND ROUND...

Thirty four years. Thirty four years of everything life consists of: happiness, pain, sorrow, the gift of four children, much laughter, much loss, much tenacious determination.

Astonishing that so much time has gone by. That 22 year old is literally long gone. She is part of who I am now, but I am such a different person.

And the seasons they go 'round and 'round
And the painted ponies go up and down
We're captive on the carousel of time
We can't return we can only look behind
From where we came
And go round and round and round
In the circle game.
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Words of Wisdom

2010-10-29T00:01:00.008-04:00

I am flattered and honored to have been chosen as a Blogger of Note at Words of Wisdom, a site dedicated to promoting quality work in the blogosphere.

I have been following Words of Wisdom for a few months now. Founders Pam (Pam's Perspective) and Sandy (It's A Real Jungle Out There) have created a resource that helps identify wonderful blogs and provides a great venue for supporting writers.

As my introductory post for Words of Wisdom, I was asked to tell a little about myself and list three of my favorite posts. Well, as anyone who has been reading my blog for a while knows, I am an unreformed class clown but I have had a bit of a dark cloud following me around for a few…hmmm…years. Multiple sclerosis, job loss, a fractured shoulder…yep, those constitute a dark cloud alright. But who knew that a dark cloud could still be funny sometimes?!?!

Besides the Dark Cloud stuff, I am an obsessive reader (see my blog The Shore Bookworm) and a cranky person with MS (see my blog MS Renegade). I have children, grandchildren, cats, a dog, a falling down house, books, books and more books. I knit and sew too. But my real passion is writing.

Here are some of the posts I’ve had fun with over the past two and a half years:

Roses

A Day at the Park

Pride and Portliness

I hope you enjoy reading them. Welcome to my wacky world.

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My First Filmmaking Attempt

2010-10-15T14:06:00.001-04:00

It is kind of dark, but it was three o'clock in the morning after all.

This is what I am doing instead of a million other things I should be doing. Like sleeping.

I am losing it. I really need to get back to work. I NEED A JOB!! Somebody? Anybody?!?

For my e-mail subscribers:

http://www.youtube.com/watch?v=wbGCMbinMeI

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Autumn Give Away

2010-10-10T12:10:00.000-04:00

New layout for the newly cool autumn days. My favorite.

Congratulations to The Mother of the wonderful, always fascinating blog, The Mother’s Handbook. (I am so jealous of her fantastic logo!). She has won my little hanging banner announcing Autumn.

Thank you to her and to all of you readers. Especially thank you for your wise and warm comments.

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A Mother's Grief and the Cruelty of Strangers

2010-10-07T13:39:00.000-04:00

This is another heartbreaking story that I have to comment on.

The Internet has such power for so many amazing, good things. Blogging has brought me wonderful friends and such fun. But individuals with twisted minds and radical agendas can make it an ugly, ugly place.

A young mother in Indiana has been happily writing her ‘mommy blog’ about her charming little family, The Real Life of a Redhead. Sadly, in August her new baby was born with a serious congenital heart defect. This young woman has spent weeks in the hospital at her baby’s side, away from her toddlers and husband at home, frantic with worry and fear. Yesterday, at age seven weeks, her baby boy lost his fight and his tiny heart failed.

Many people have rallied around her, offering condolences and prayers. But incredibly, horribly, a grass roots group of fanatics is denouncing and condemning her as a murderer because she had the baby circumcised!!

These anti-circumcision “activists” are spewing hate across the Internet, leaving messages on her blog such as “…she got exactly what she deserved…I hope she feels guilty for the rest of her miserable life…”
They are even planning a demonstration at the hospital where the baby died.

There are so many wonderful people in the blogging world that it makes this kind of hatred all the more stunning. Who would be so cruel to a grieving mother? I suppose the same people who would hold up a sign that says “God Hates Fags” at the funeral of a young Marine.

Zealots have tunnel vision. The world is black and white and their way is the only way. As a young mother, I chose an attachment style of parenting, breastfeeding, the family bed, having my babies at home. But I had respect for people who chose a different parenting model than I did. As I used to tell the couples in my childbirth classes, every family has to make their own best choices for them. There is no formula for raising a family, you have to do what feels right to you. There are many good ways to be a parent.

The people who are verbally assaulting these two heartbroken parents are despicable. Many of them proclaim themselves to be Christians, but I cannot conceive of anything less Christian than inflicting more pain on a suffering family.

I would love to see this story spread to as many people as possible to support Jill and Shane. Please pray for them. Send compassionate thoughts their way. With only one income and heavy expenses, they are also hurting financially. Donations are being accepted by the funeral home, which is listed on Jill’s blog.

And, finally, please pray for the cold, callous hearts of the merciless radicals who put their own ideology ahead of simple human decency.

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A Right to Privacy

2010-10-03T17:21:00.000-04:00

Recent local tragic events have become news nationally.

In the third week in September, a Rutgers freshman set up a webcam to secretly broadcast his roommate as he engaged in an intimate encounter. The individual who perpetrated this invasion of privacy has subsequently been quoted through his Twitter account, several times making much of the fact that his roommate was apparently gay. The screen shots of his Twitter page reproduced in the media reveal a vulgar, self absorbed young man. I suppose not too different from many adolescents.

Unfortunately, in this case, his arrogance and homophobia precipitated a crisis for the boy he so cruelly humiliated. He could not have known that it would have fatal consequences, but it did. There is no way to change the fact that it caused the other boy to jump to his death from the George Washington Bridge. He was 18 years old.

I am not going to repeat this boy’s name. It is the subject of headlines, news stories, vigils and water cooler conversation all over the country. It has become a rallying cry for tolerance and understanding. And none of us have any right to it.

This was a private individual whose most personal moments were broadcast over the Internet without his knowledge. He found this so unbearable he felt he could not live with it. How awful it is that after his death, when he is utterly defenseless, his name is common knowledge and has been repeated incessantly by the media?

A true travesty occurred Saturday at the Rutgers homecoming game. The boy who died was, by all accounts, a sweet, sensitive violin player. Again, a private person. And yet he was ‘honored’ at a football game of all things, his name displayed prominently, an awkward moment of silence required before the swilling of beer and hot dogs. Scarcely an honor. I have a sense this child would have been mortified.

Our society cannot tolerate treating each other in the way this boy was treated. Our children have to be taught that at home. It needs to be reinforced at school. But even now I see only lip service from Rutgers. A football game?!?! This choice, in the worst possible taste as far as I’m concerned, is a classic case of too much, too late. It is crucial to address the issue of bigotry and bullying in a meaningful way. This was not it.

They have it so wrong I despair for them getting it right. From the shenanigans of the university president to out of control frats, Rutgers has a notorious reputation for looking the other way when the subject is painful or inconvenient. Only the administration at this school would find a football game the appropriate venue to memorialize a violinist.

This heartbreaking incident is a perfect object lesson for what needs to change in our society. But it needs to be a lesson about the thousands of anonymous children and adults who are harassed every day, not just about this one quiet boy. One quiet boy who never asked to become an icon. One quiet boy who found a breach of his privacy so painful it drove him to utter desperation. He never had a chance to grow into himself and will never find out it could have gotten better. In death he deserves the dignity and obscurity he preferred in life.

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September Giveaway Winner

2010-10-02T09:24:00.000-04:00

Congratulations to Brookeamanda, author of the very funny Babbling Brooke. She won my September giveaway, the little felt cottage needle case!

I asked Mr. Spickles to assist me in choosing a name. At first he refused, muttering something about being morally opposed to gambling and anyway he was resting.

I pointed out I saw him clawing my favorite mohair throw that I got in Ireland and he would be toast if I caught him again.

He was shocked!

He thought he had been more subtle than that.

All of a sudden, he was on board ...

...and next thing you knew, I was reading off Brooke’s name.

Thanks to all my readers and to everyone who left a comment this month.

I have another small giveaway this month. In the next week, anyone who leaves a comment will be entered in the drawing for this little banner announcing Autumn. It is hand embroidered (by me) and is 5” x 6” with a 3 1/2” hanging ribbon. It is backed with a piece of autumn-y fabric. I, or Mr. Spickles, will pick a name on Saturday, October 9.

Thanks, as always, everyone for reading and especially for your thoughtful comments!

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I Am a Renegade

2010-09-26T09:10:00.000-04:00

With the pretentious assumption that I have something worth saying, I have started a separate site just for discussing life with MS.

There are many blogs, websites and forums out there that deal with Multiple Sclerosis. I have found most of them, while earnest and well intentioned, are not for me. Forums where people sign their names with illustrations of bunnies and rainbows are not for me. Blogs where people say delusional things like “I have MS but it doesn’t have me” are not for me. Websites that extol individuals who do things like climb Mt. Everest despite having MS are not for me. Because that is not the experience of MS that most of us have. Web sites that call a spade a spade are for me. So that is what mine will be.

I hope you will stop by and even more I hope you will contribute. I always welcome comments. I will also welcome guest posters; e-mail me with your thoughts or ideas for a post. And I have a separate page for our dedicated, often underappreciated, caregivers, where they can describe their journey along this rough road.

Having MS absolutely sucks. Sure, your attitude towards life is a choice. But I cannot pretend that Multiple Sclerosis has not stolen my career, my independence and my future. I hate it with every fiber of my being and I will not go quietly. That is why I am writing MS Renegade.

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It WAS My Birthday!

2010-09-21T20:27:00.004-04:00

Completely forgot my e-mail subscribers can't see embedded videos!! Sorry about that! So here is a do-over, because this is an awesome version of The Birthday Song:

http://www.youtube.com/watch?v=MjF1bG5LUcs

Just look at those people!! Can you even imagine so many coming out just to see you!?! I wonder if you ever get used to it?

And here is the embedded version, in case you missed that:

I had a super birthday, thanks to my children and my amazing, generous, loving friends. My daughter brought me breakfast and we sat in bed watching the Today Show and generally laughing at everything. I received good wish after good wish all day long, on the phone, in the mail, in person and on Facebook. And tonight had dinner with half the kids, their Significant Others (who I love) and my beloved grandson, who is a total character. He sat next to me and gallantly picked up my napkin every time I dropped it, which was pretty often due to lack of feeling in my hands. Finally he said, very seriously, "If you drop it again, I'm not picking it up." Alrighty then.

Thank you all so, so much!!

_______________________

Last chance for a Giveaway on my Bookworm page, The Shore Bookworm. Leave a comment by midnight Eastern Time tonight for a chance to win "Past Caring" by Robert Goddard. While you're at it, sign up to get The Shore Bookworm delivered to directly to you. I am doing reviews and recommendations of great books, old and new, children's books and adult's books and generally commenting on the magic of reading. Come join the fun!

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They Say It's Your Birthday!

2010-09-20T21:02:00.005-04:00

Here are Sir Paul and the people of Moscow wishing me a happy birthday. They are SO thoughtful!!

Sigh. Even after all these years, gotta love Macca!!

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Stormy Weather

2010-09-17T21:21:00.013-04:00

Wonderful Support

I have to say I am so touched by the response to my previous post about being ~~crucified~~ ~~lambasted~~ mildly criticized on a blogging forum. I am the first one to admit I am a card carrying histrionic over-reactor. So sue me. I maintain hyperbole is one of life’s great pleasures and keeps things interesting.

At any rate, I may have over-reacted a teeny, tiny bit, but I still stand by Operation Nice, because nice is a good thing to be. You can see that in all the lovely comments left all the nice people I am surrounded by.

The Cat

I have always loved animals and was not allowed to have a pet as a child, which made them all the more attractive. Since I have had my own household, cats have been a constant. Dogs frequent, but cats constant. I truly love cats and I could be a crazy cat lady in a heartbeat, although my daughter maintains I already am a crazy cat lady. Harrumph. I could easily have 20 cats if I didn’t control myself and limit it to my current two. The ASPCA had a sign outside this week that said “KITTENS” and I almost crashed the car.

It is a well established fact, I am a cat person.

So I am humbled to say…almost whisper…one of my cats is DRIVING ME OUT OF MY COTTON PICKING MIND!!!

Technically, she is not mine, but my oldest son’s. He and a previous girlfriend adopted her and the girlfriend thought it would be funny to call her Perri, ‘little dog’ in Spanish. Hardy har har. Or maybe it was his idea and he said it was her's so I wouldn’t think he was an idiot. Whatever. Girlfriend goes, cat stays, new girlfriend (subsequently wife) comes, cat goes. It happened more subtly than that, of course, with plaintive comments about his life as a busy lawyer, cat is lonely, no fair to the cat, poor cat, sad cat, cat feels abandoned, cat needs therapy…ok, ok, I’ll take the freaking cat!

My daughter picked her up in Jersey City on her way home from Manhattan College at the end of the school year five years ago. The fact that Perri literally caterwauled all the way home to the Jersey Shore was our first clue that this tiny little tuxedo was more than she seemed.

Much more. More everything. More jumping on things. More knocking things over. More breaking things. More puking from eating too fast. More meowing (a piercing, ear splitting meow) to go out, which I do not allow. More always trying to get out. More clawing at the screens. More unfriendly. More all over teeth-clenching aggravation than any cat I have ever had. Although she is very pretty and silky. End of redeeming qualities.

Through a quirk of coloring, she always looks as though she has a frowny face.

And coincidentally, she is a total pill. Does not cuddle, does not like to be petted, but loves getting in the way.

I have not slept through the night, or lying down, since I broke my shoulder two years ago. I doze for an hour or two, then I am awake for another few hours, then doze again. Last night, for the first time in I don’t know how long, I was still sleeping at 2:30 a.m. When I was woken up by a cat screaming. A cat outside in the storm. A cat that sounded suspiciously like…my cat.

I stumbled to the back door, barely made it down the steps, opened the door and there was nothing there. Hmmm. I must have been dreaming. Up the stairs, back into bed, pull up the covers and cat screaming starts again. F****k.

Stagger back through the house, down the stairs, pull open the door expecting a little cat to slide in at my feet and I find myself nose to nose with this:

I screamed! She screamed! Thunder and lightning crashed!

Then she dropped to the ground and sauntered in as though to say “What the freak took you so long?” She proceeded to jump up on the kitchen counter and knock over a plant. I never got back to sleep for the night.

Oh, and here is my screen today:

I am starting to ~~intensely~~ somewhat dislike her. Don't let her know!!

I think she is watching me.

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Operation Nice

2010-09-12T04:17:00.002-04:00

I am no saint by any stretch of the imagination. But I am generally nice. It doesn’t take much to be nice. Even if you, like me, frequently despair for the future of the human race due to all around ignorance and obtuseness, I find that in one-on-one situations, I am far more inclined to be nice than not.

This is why I was absolutely gutted when two strangers, without any provocation, recently criticized me on a blogging site. I hadn’t asked for a critique, but I sure enough got one. And it wasn’t pretty. It actually felt mean spirited to me, and senseless. It made me cry. Because any feedback I have ever gotten for my blog has been positive. My blog, and its readers, have been among the only consistently good things in my life over the past two and a half years. I’ve lost jobs, I’ve had multiple unsuccessful surgeries on my broken shoulder, I have been in constant pain and Multiple Sclerosis has progressed, but my readers have held me up time and again with endless encouragement and love.

To have two strangers tell me I sounded annoying and boring was crushing. It wasn’t asked for. It wasn’t called for. And it wasn’t very nice.

I have read some blogs that were practically illiterate they were so bad. I have seen people write some really stupid things. But I would never tell the writers that, ever. The fact that they make the attempt to get out there is a brave act by itself. Who am I to criticize them? It is a classic case of having nothing good to say, I will say nothing at all. Why would I deliberately hurt someone in that way?

While still smarting from the unsolicited disparagement (ok, obsessing; happy?!?), I accidentally came across a blog created by a girl right here in New Jersey. It is called Operation Nice, subtitled Encouraging Individuals to be Proactively Nice. Right, an accident. Once again, when I am at a low point, I have had something put in my path that reminds me there is the potential for much goodness in the world.

Melissa’s blog contains stories of people being extraordinarily nice, not simply holding the door for someone. Her sidebars are loaded with tips and ideas for being nice, including this one: “Paying someone a compliment can actually decrease your level of anxiety.” Her philosophy is a simple one. We improve the world one kind encounter at a time.

I will never tell someone “the whiny intro here certainly doesn't do anything to inspire anyone to take an interest in your blog”. Or that their blog evoked “shrugs” after reading “a few sentences”. There is absolutely nothing to be gained in saying that to someone. I would rather be part of Operation Nice.

Did you like what you read? Let others know. Thanks!

Inspiration

2010-09-06T11:13:00.004-04:00

While I love nothing more than a rip roaring pity party, I find God puts people in my path who are so strong and cheerful in the face of adversity that I am forced to be hopeful and inspired. I hate that. It is so much more fun to be miserable and self-pitying. But there you have it. These people are quietly resolute in their capacity for enthusiasm and good nature and there is no escaping their spirit of faith and their resiliency.

Live and In Person

When I started graduate school I was lucky to have several wonderful professors, two of whom have become friends. One is a smart, funny woman with a wry sense of humor, someone who is referenced in textbooks in her field (!) and has been a great, encouraging influence.

The other is the teacher of the first graduate class I had. Within minutes of class starting, I was entranced by this young woman, young enough to be my daughter, who is a walking fountain of knowledge. Literally. She is an intellectual sponge who has a Ph.D. and at least two Master’s Degrees. She may have even obtained another one while I was typing this. She is sweet and funny and celebrates geekdom, so we totally hit it off.

What you don’t know about Rebecca initially, however, is that she is a cancer survivor. She has been very, very sick, yet has continued teaching in a matter of fact way, discreet and unassuming. If it had been me, I would have been teaching with a box of tissues in my hand, weeping copious, attention getting tears while moaning “Why me?!”. Not Rebecca. She has just gotten on with it. Not only that, she also gives back in ways that most people are never aware of.

One of Rebecca’s quiet passions has been teaching those incarcerated in the prison system. She has taught over 70 courses since 1998 to both men and women inmates in minimum to maximum security prisons. In addition, Rebecca has taught or directed over 1000 hours of workshops and continuing ed classes. Most recently she completed a three year, $1.8 million program that served over 500 participants. While she would never describe it this way, this endeavor has involved enormous investments of time and energy, long drives to the prisons and emotionally draining experiences. She has done this work even while sick, as she is of the firm belief that education will help at least somewhat in reducing recidivism and getting people back into the real world.

But this summer she gave back in one unique way that actually made the newspaper. Rebecca had long hair. Very, very, very long hair. Like over three feet long. She wore it in a bun most of the time so you didn’t realize just how long it was. But it was Rapunzel-long.

In August, Rebecca climbed into a salon chair and had it cut to shoulder length. What was cut was donated to Locks of Love, an organization that makes wigs for cancer patients who have lost their hair to chemo. They estimated that they might even be able to make two wigs out of what Rebecca generously donated. And she looks absolutely fabulous.

You're the best, Rebecca!

Another person who gives me much to consider when I view life is someone I know through church. She is a very private person, so I will not go into details, but that is part of what I admire about her, the fact that she is so modest and down to earth. She is a tireless worker in every aspect of her life, doing things that require such dedication it overwhelms me just thinking about it. No matter what she is dealing with she never has lost her sense of humor. Best of all, she laughs at my jokes.

There are many of us online writing blogs about living with Multiple Sclerosis, but none does it with as much panache as my friend Marc. Having won the Crap Lottery prize of Primary Progressive MS, Marc is a model of an erudite, polished, informative but friendly blog writer. His physical limitations have not stopped him from using his prodigious artistic talents of photography and film making, which he also shares on his blog. For Marc, just getting up every day is a triumph of will over fate. Make no mistake, he is angry at what he has experienced, but he has turned it into a statement: Screw you, disease, I am living to the fullest. He is the Wheelchair Kamikaze.

Then There are People I Only Know Virtually

Becky is a therapist working in the western United States. On her blog, she expresses herself in a way that makes it clear she is a warm and humane practitioner, full of enthusiasm for her work and compassion for her clients.

Becky also has retinitis pigmentosa, which has stolen her eyesight but not her passion for life. She bikes with her husband, she is a public speaker, she RUNS!! Oy, I barely like walking from room to room, never mind running outside. And I can see!

Becky’s companion through many of her activities (besides her uber-spouse, Steve) is her guide dog, Cricket. In addition to being uplifting, Becky’s blog is a great tutorial about living with and dealing with a guide dog. One of her primary messages is about the resiliency of the human spirit and Becky invites people to send in their stories. These are both sobering and moving, messages of hope and the will to thrive in the face of tragedy and obstacles. You can read Becky’s encouraging messages at Crusin’ With Cricket.

Some other inspiring bloggers I have recently encountered:

Daily Spirit

Caregivingly Yours

They are all around us, these quiet heroes. We are often unaware of them because they do not broadcast themselves. They model powerful lessons for me with their everyday lives.

If you have any you would like to add, please leave a comment!

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Fifty Seven Years Ago Today

2010-09-05T09:49:00.006-04:00

On September 5, 1953 my parents were married in St. Elizabeth's Church in Manhattan, in Washington Heights, the neighborhood where they had grown up. It was blazingly hot that day, there was a heat wave in New York City at the time and, of course, no one had air conditioning. They were 19 and 21, younger than all my own children are now. Impossibly young.

They are still together after all these years. Not quite a fairy tale ending, but still together.

In the picture below, from left to right, are my beloved, handsome grandfather, who died in 1999 at 95, my aunt who was 6 at the time and is still rollicking around, my adored grandmother, who died in 2000 at 96, my mother, my father, my loving aunt who is still hale and hearty, my uncle who died in 1998, and my dear, generous aunt, still with us, who taught me how to quilt. I really cherish this picture.

Fifty seven years is a long time. Only a little longer than 56, which is how old I will be in two weeks, as I came along a year later.

Me, the icing on the cake.

Although I suppose my two brothers and my sister might be taken into consideration too.

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September Give Away

2010-09-03T19:51:00.007-04:00

September is National Sewing Month, created to honor and recognize the importance of home sewing.

I love to sew. I was lucky enough to have two aunts who taught me how. My Aunt Joan did it as a hobby, but the other, my beloved Aunt Dottie, was a brilliant seamstress and designer. My cousins were in ballet recitals every year and Aunt Dottie made all their costumes, gowns really. I was enthralled by her basement workplace, where dozens of dresses in gorgeous, lush fabrics hung enticingly. My Aunt Joan taught me how to quilt but Aunt Dottie taught me how to piece a pattern together and what the difference was between sloppy, basting type stitches and even, precise stitches that were the only ones acceptable. Spending weeks with her in the summers, I made Barbie clothes stitched by hand with the fabric scraps left from my cousin's costumes. That time, those lessons, were a lasting gift.

Today when I make something, I am always thrilled by the process of putting together bits of fabric like a puzzle and having a finished product emerge. Home Ec is so scorned in school, but I think everyone should learn at least the rudiments of sewing. It is a skill that will always serve you well.

In honor of National Sewing Month, I am giving away a little needle case I made from felt in the shape of a thatched Irish cottage. Tiny french knots represent flowers alongside the front path and a minuscule glass bead stands in as a door knob. Inside are two pages to hold needles. Whether you are a regular sewer or never sew anything more than a button, this is a sweet little case to store your needles in.

Everyone who leaves a comment in the month of September will be entered. I will chose one name on September 30 as the winner.

So, leave a comment, good luck and thanks for reading!

Summer is Ending

2010-09-01T05:14:00.002-04:00

Time for a layout change.

Fall, my favorite season, is almost here.

Be a Bookworm

2010-08-31T13:10:00.002-04:00

I have finally updated my Bookworm site after letting it languish for far too long. I forgot how much fun it was to dig out my old favorites and then, also, for my opinionated self to describe current books I’m reading.

To ~~bribe~~ entice readers, I am offering a Giveaway. Leave a comment on The Shore Bookworm over the next two weeks and be entered into a drawing for a fabulous British mystery. Past Caring by Robert Goddard is a story of a decade’s old mystery, a long hidden diary, a secret engagement, scandal, disgrace and murder. Almost no one is who or what they seem to be in a plot with a dozen twists and turns. Five hundred pages of who done it/who is it/where is it fun!

So stop by and leave a comment.

Thanks!

Some More Saturday and then, Sunday

2010-08-28T14:19:00.002-04:00

I forgot to tell you!

Saturday afternoon I was sitting at the back of a session that overlapped another room where massage therapists were quietly giving chair massages. Sitting in my power chair, I was listening and knitting like Madame Defarge, when a woman crouched down next to me. It was one of the massage therapists and she whispered, “When the session is over, see me and I will give you a thorough hand and arm massage.”

Woo hoo!!

She didn’t have to tell me twice. I sought her out about twenty minutes later and we chatted while she worked my hands and arms. She was charming and interesting and soothing. We talked about the mystery of how we are drawn to people, as she said she was drawn to me that afternoon. We both believed that there is some sort of intangible connection that one sometimes never understands, but is there nonetheless. We talked about the power of alternative healing practices. We also discovered we had strong, loving ties still to our late grandmothers and viewed them as forces in our lives even though they were gone now. Altogether a fascinating and relaxing half an hour.

Also forgot to tell you…as the dinner in Tribeca was ending, one of the women there asked if anyone wanted one of the last flash drives that were being given out as a promotion. Out of, I guess, several hundred, a couple had $500 gift certificates to Target on them. Well, I wasn’t even considering the gift certificate, I needed a new flash drive for a project I was working on. So I jumped at grabbing one.

Got back to the hotel, hopped into my p.j.s, plugged in the flash drive and UP POPPED A $500 GIFT CERTIFICATE TO TARGET!!!!! AAAGGHHHH!!!! I couldn’t believe it. After contacting the Energizer Batteries, the contest sponsor, and after doing everything but signing my name in blood to prove I had received the flash drive under the proper circumstances, I received my card yesterday. New laptop, here I come!!! They also sent me a charger and four rechargable AA batteries. Now that is exciting.

Sunday

I had intended to go to church Sunday morning at St. Thomas Fifth Avenue, the magnificent Episcopal church one block from the hotel. I had even verified access with my chair. Unfortunately, I, who am up at 5 a.m. every morning of my life, overslept and never made the service.

Instead I went with Hurricane Danielle down to the lobby Starbucks and bought a massive latte. God subsequently punished me for missing church by having me knock the whole thing over after I had taken one sip, saturating the hotel room carpet with Starbucks. I tried soaking it up and thereby ruined several hotel towels. I am still waiting for a bill.

The lesson here? Set your alarm and go to church.

So we packed our swag and sundries and checked out one by one. The four days had flown. I sat in the lobby and waited for Mary Kate to pick me up. A few hairy moments were spent when I found out Sixth Avenue was closed for an obscure parade and Mary Kate had to find a different route to the hotel. But she, who had never driven in the city before, did fine. We were home in an hour.

Here are some of the remarkable fellow writer/bloggers I met:

Kiratiana Travels

Awesomely Luvvie

Sandy Martinez

simple.green.organic.happy

Danielle Liss

kb-in-nyc

amajuamarket

Nancy's Garden Spot

Black Belt Mama (sounds scary but was very sweet)

Thanks Mail Carrier

An Island Life

A Frugal Friend

Simply Cathi

Organized Life by Design

My overall take on the conference? It was interesting, but ultimately a little disappointing.

While there were many sessions to attend, a lot of them had similar themes and consequently felt somewhat repetitive. Considering the range of subjects we blog about, I think there could have been a better variety. While the idea of tracks was a good one to organize the sessions, it was also limiting in subject matter. Perhaps it would be better to simply have a wide variety of sessions not attached to any particular theme?

Another issue, the sheer size. There were so many people, it was difficult to cultivate sustaining conversations, never mind relationships. Although everyone had business cards, which did help me remember connections. Attempts to address this were made through various parties and get togethers. However, at the end of the day, I was too exhausted to get to those.

My mobility limitations had a huge impact on my participation in all events, but I am going to write a separate post on that.

On the plus side, I was thrilled several times to have strangers tell me they read, and love, my blog!!

I do know it took a massive, unfathomable amount of work to organize an event like this. And for that alone I give the BlogHer staff enormous credit and thanks.

Next year in San Diego? We’ll see.