Thursday, January 12, 2012

The Soundtrack of Loss


World War I didn’t have a number at the time it was fought.  We didn’t realize another hellish nightmare would engulf our little planet within the next twenty or so years.  At the time it was called the Great War, although the only thing ‘great’ about it was the number of casualties.  More than 8 million soldiers were killed from July 1914 to November 1918.  The Armistice was officially signed the morning of November 11 of 1918, the eleventh hour of the eleventh day of the eleventh month.

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

In rural Sussex, England, Edward Elgar, the composer, had been able to hear the artillery fire in France echoing across the English Channel.  He was profoundly depressed by the war and the unspeakable toll it had taken.  His music until this point had been bombastic and rousing for the most part, but, now 61 and drawing close to the end of his career, he was moved to write something that was rather out of character.  As a tribute and an elegy, he created a cello concerto in four movements that was haunting and melancholy.    Unfortunately, its premier in 1919 was not auspicious.  Never having an opportunity to catch an audience, it failed to achieve a place in popular repertoires and soon faded into relative obscurity.

In 1965, at the age of 20, cello prodigy Jacqueline du Pré chose to resurrect and record the Elgar Cello Concerto with Sir John Barbirolli and the London Symphony Orchestra.  The resulting performance was passionate and stunning and quickly developed legendary status.  The Elgar Cello Concerto became one of her signature pieces. 

So a composition written to mourn a massacred generation now became a best seller almost fifty years later, interpreted brilliantly by a beaming 20 year old.  Jacqueline was classical music’s darling in the 1960’s and when she and pianist (and eventual conductor) Daniel Barenboim married in 1967 that just doubled the allure.  Their careers were on stellar tracks.   It seemed 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 of sensation in her fingers and elsewhere in her body.  She continued to play, but experienced more and more difficulty, her symptoms progressed and, emotionally fraught, her personal life became chaotic.  She was finally diagnosed with multiple sclerosis.  Despite attempts to defy the disease, she played her final public concert at the age of 28 and died of MS related causes 14 years later, when she was just 42.

MS is a relentless thief that had no cure when Jackie was diagnosed in the early 1970’s and is still incurable today, almost forty years later.  It is utterly unpredictable.  Some people never experience anything more than mild symptoms that come and go.  Others have a rapid and deadly decline.  Most of the rest of us fall in between, with a more gradual but undeniable and grievous progression.  There is no way of telling who will have what development.  You just have to wait and see. 

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

Because MS affects nerves, it can cause damage and malfunction in any part of the body.  Most of us experience fatigue, numbness and burning in our limbs, severe, painful muscle spasms and, eventually, considerable difficulty with ambulation.  Becoming immobile is like approaching the edge of a slippery slope.  Although MS is not technically fatal, the accompanying complications – pressure sores, bladder dysfunction, breathing and swallowing problems – are the things that shorten our lives.

Then there are the other costs of multiple sclerosis.  In my case it has destroyed my career as a business executive and, as a result, my way of life.  I loved my job, I loved to travel, I was so happy and, with my children almost grown, I looked forward to years of productivity and pleasure ahead.  The future 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 milk or do my own laundry or clean my home.  My marvelous, charming old house, which was my dream-come-true that I bought all on my own, is slipping out of my hands, as I can no longer afford it.  My children, who already lost their father when they were little, have had a terrible time accepting my illness.  One has gone so far as to cut me out of his life entirely, which is the worst, most excruciating loss of them all.  It is so unfair to expect them to take care of their mother and their own children at the same time.  As a widow with no significant other, there is no other caretaker.  It will not be long before 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 a wheelchair, 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, I hear the eloquent, elegiac melody created by Edward Elgar out of his own pain almost one hundred years ago.   Played by Jackie in her youthful prime, conducted by Daniel Barenboim, knowing how their stories 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 prominent performances, although as of this writing it has not been decided which one.  I am so grateful to them for giving her the recognition she deserves.

In the movie Jackie and Hilary, about the relationship between Jackie and her older sister, there is a scene that absolutely captures what it is like every time you remember what MS has stolen from you.  I include it in my annual du Pré post to help people 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 with multiple sclerosis and, if you are able, to support the organizations that provide 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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Tuesday, January 3, 2012

It's a Wrap

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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Wednesday, December 21, 2011

Just for Fun

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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Wednesday, December 7, 2011

Changing Times


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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Monday, November 28, 2011

My Baby's Birthday


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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Friday, November 25, 2011

Thankful



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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Tuesday, November 22, 2011

Killing a Fly With a Cannon School of Thought



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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