Do Not Fear, For I Am With You

I have been struggling with much grief and fear this holiday season.  My beloved family is fractured, some of my children estranged, it seems, beyond restoration.  Being a mother has been the bliss of my life.  Without them, meaning, pleasure, any sense of satisfaction, has paled, despite the outstanding nourishment of my many friends, my remarkable daughter, who is endlessly supportive and helpful, and my delightful grandchildren.  They are all wonderful and I am truly, truly grateful for their love and infinite encouragement.  But we always want what we don’t have, don’t we?   One of our great human flaws is a recurrent inability to be satisfied by the good that we do have right under our noses.  We long for what we miss.  And I miss my children with a gnawing pain that literally howls through my every waking moment.  I try to move on, I try to be accepting, but their absence is a bottomless pit of loss and pain.

Then there is the fact of the unknown.  With the spread of the cancer, it is literally a waiting game.  Waiting for the other shoe to drop.  Waiting for the inevitable day when my oncologist calls and the result of my biannual scan is no longer good news.  Fearing that the facts would be simply too hard to face, I have never asked or researched what exactly my prognosis is.  Last month I finally screwed up the courage and looked it up.  Breast cancer which has spread to the liver has a projection of three to five years from diagnosis.  I know it could be worse.  But I am greedy, another very human flaw.  I want so much more time.  I am already a year down.  I am sad and I am scared.

My faith has been shaken.  Yet another flaw.  I am the first one to admit, I am all too human and all too flawed.  But it has been awfully hard to remain reassured by the spiritual when the corporal is so spectacularly challenging.   Loss upon loss upon loss has worn me down.  The basest, most immature part of me cries out, haven’t I had enough already?!?  I know intellectually that life is just like that.  It doesn’t matter if you have tried to be a good person, tried to do the right things.  Good intentions + going to church + doing the best you can = health, happiness and success, right?  But there is no formula, no equation.  Stuff just happens.  

I have never believed God causes bad things to happen to us, I do not believe He visits disasters upon us.  I could not believe in a vindictive, punishing deity.  But lately I have found it is difficult to believe in any deity at all. 

I have received many Christmas cards this year from the delightful people I am surrounded by.  One card was from someone who is particularly special to me.  The day it arrived was an especially busy one.  Before I could open it, I was interrupted and set it aside.  Four days later, when I went to open it and reply, it was nowhere to be found.  I felt sick.  I turned every room upside down.  Because my mobility is so limited, there are not too many places I could have lost it in.  I went through every box and basket, every surface.  Nothing.  I chastised myself over and over for being so careless, so disorganized, so stupid, so thoughtless, on and on.  I automatically invoked Saint Anthony, every Catholic’s resource for lost things.  But I didn’t really believe a word of it.                                                                                                                                  

After another fruitless round of searching I collapsed in my recliner, utterly exhausted and discouraged.  I’ll just rest for five minutes, I thought, and then I will look again.  It must be stuck in something else.  I’ll turn out every catalog, every book I have laid my hands on in the past year, every container.  As I leaned my head back in the chair I noticed a small white envelope lying face down on the corner of my chairside table.  This is a tiny table, with barely enough room for my laptop.  I had searched for card on the table easily ten times.  I had picked the laptop up each time.  There had been no card.  It wasn’t there.  But it was now.  Perched on the edge, bright white, unmissable.  

I burst into tears.  I don’t ask for signs, I never have, even when my faith was at its strongest, I never felt comfortable testing God, demanding things.  It felt disrespectful and disloyal.  But I believed at that moment, with the inexplicable appearance of a card I had been searching for over hours, God had sent me a sign.  He had sent me a message: do not fear, I am with you.

After I had children, I struggled deeply with the concept of putting God before else, as demanded in the Bible.  How could I put anything before my beloved children?  How could I?  It was impossible, nothing meant more to me than my children, not even God.  I always felt guilty about that and even slightly fearful.  How much of a sin was it?  Was I dooming myself to eternal damnation because I was putting mortal beings before the Lord?  I decided it didn’t matter.  I loved my children more than life itself and if God didn’t understand that, oh well.

But here I was, facing Christmas Eve alone, the night we traditionally had come together as a family and celebrated the holiday.  The night I cherished as a representation of everything I loved most in the world, the night I had the opportunity, shallow though it was, to tangibly demonstrate my love for them by giving them things I thought would make them happy.  The sadness of being by myself, of knowing that they were deliberately choosing to exclude me from their lives when I needed them the most, was overwhelming.  I had laughed in God’s face and told Him He meant less to me than these people who were wounding me so deeply.  And He was saying, I am here anyway.

Some may scoff at what appears to be my fanciful superstition.  Some may say say that the card had been there all along and I just missed it.  Some may argue there is a perfectly logic explanation for missing that glaring white envelope all those hours.  And I might agree with all of them on some level.  But I am making a choice.  I am choosing to not be miserable.  I am choosing to be reminded that I am not alone.  I am choosing to not be afraid.  I am gratefully, humbly choosing to accept the gift of God’s love and comfort.

Isaiah 41:10

10 So do not fear, for I am with you; do not be dismayed, for I am your God. I will strengthen you and help you; I will uphold you with my righteous right hand.

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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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