Sunday, January 29, 2012

Mother of the Bride

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.  In this creation 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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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:

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:

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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