Dancing at the River's Edge RSS

A Patient and her Doctor Negotiate Life with Chronic Illness
Alida Brill and Michael D. Lockshin, M.D.

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Alida Brill

Mar
1st
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‘Tis the season to be…


Reflective, I suppose. 

The Chanukah/Christmas/New Year cycle is hard for many of us and particularly sad for me. I’m far too old to believe in Santa Claus, and finally too wise to hope a package will arrive with the ultimate Magic Wand to cure my illness.

So what is left for me to revel in about my life as I light the first candle of Chanukah at sundown tonight with Christmas also knocking on the door and ‘09’s mysteries swirling?  I could recount my medical woes and many tribulations of this year but my chronic disease hardly gives me the exclusive right to a monologue on suffering. And ’08 and its challenges hit almost everyone I know.  It’s been an exceedingly difficult year for many both those well and unwell.

Despite it all I feel something should be recorded in my last posting of the year.  This 21st century with its exhilarating, maddening and magical technologies gives me the opportunity to share a Holiday Greeting with my friends and all the visitors to the Dancing website.

In the midst of my own pain and the conscious awareness of that of others, I come back to the concept of joy. And am reminded of a quote by the author Djuna Barnes from Nightwood written in 1937: “The unendurable is the beginning of the curve of joy.”

During this year I have reached almost the last moment of my endurance, creeping into an admission of the unendurable. My family of choice has lovingly crushed me into going forward. Their concern and presence and unfailing loyalty comprised exactly the meaning of the Barnes quote. They are the beginning of the curve of joy in my life.  Words and phrases said and written to me in this entire year recycle in my memory and give me courage to go ahead into an unknown year with less fear. 

Just before I headed to the West Coast I forced myself the few blocks from my apartment to Fifth Avenue to observe once again all the usual festivities at Rockefeller Plaza. Anger at my body turned into a cranky silent whine and a growing dismay I had attempted it when I overheard a small girl speaking. She said to her father, “Is it always like this here? I’ve never seen anything like this before.”  I couldn’t stop myself from intruding.  I said, “It’s always like this at Christmas, but the rest of the year in Manhattan holds wonderful surprises too.”  She could not have been more than five years old.  She said to me, “I am going to live here when I grow up.”  I smiled and told her that had been my dream and she could make it her dream.  It surely was my adolescent dream and became a reality when I was still in my 20s.  It’s been a life with many surprises and not always happy ones. But living in Manhattan has made me understand more fully the gift of being alive and my desire to remain present for each moment of human joy however small the offering given to me.

Surrounded by the comfort of close meaningful friendship in Manhattan mutes the noise of physical pain.  Now I am in Los Angeles, a far more solitary place for me.  For others it is a social place, a family place and a glamorous city or an impossible one.  It is my place of solitude and contemplation and where I write most of the time I am here.  It is a place where the intensity of pain and the acceptance of relentless disease is a vocal presence against the backdrop of personal silence. Los Angeles is also my childhood love.  The love of a city is just like the truth of first love.  It is impossible to see realistically or to let go of the illusion of how perfectly glorious it was.  Here there are fewer friends and distances by automobile are not easy for me to navigate. Too easily I move into “stall and wallow” mode.  My solo-status is not as acceptable here as it is in Manhattan, a city that has made being alone interesting, if not downright sexy.  Pain vibrates across me; frightening helicopters hover in the sky over my neighborhood.  I question my sanity, my purpose, my judgment, the pointless quality of all of it or any of it.  I think about flying into the blizzard and reclaiming my “real” life in Manhattan —  immediately.

Then, as before, when I come close to the edge of the unendurable an old friend calls to take me to lunch.  The restaurant turns out to be a stunning revelation to both of us.  It is in a fairly charmless neighborhood surrounded by freeways and homes with bars on the windows but inside it is a true Latin Christmas. It’s as if we had gone for a quick vacation to Central America.  The food is delightful, the setting cozy, our companionship and conversation comforting and stimulating to me.  Families sharing holiday lunches are seated all around us.  I do not have a family but I feel a part of the happiness at one particular table.  My friend and I note it to each other. I am alone but suddenly I do not feel isolated. Then my friend tells me that the night before someone ran a stop sign and came within inches of a crash that sends chills down my spine as the story is recounted.  I think of the years of our friendship and the many conversations we might still have about any number of things. I realize that the world and my life would be less filled with light, with joy, if the unimaginable had happened to my friend the night before with the reckless driver.  We may well share other meals together in the future that are just as wonderful but probably not ever again one that will be as precious to me as this one.

Another day as I was driving around lost and in the haze of my L.A. directional dyslexia, my cell phone rang.  I pulled over to the curb — because of the new cell phone laws in the state of California. It was my friend Gail, recovering from orthopedic surgery, in a snow-bound Manhattan.  I sat in my car and we talked about our lives, our friendship.  I told her that my work, the writing, was what I had to hold onto, what I had left from the ravages of disease and personal errors.  When I hung up I saw the mountains with their snowcaps surrounding the Los Angeles basin.  They popped up in 1950s Kodachrome clarity.  They had been there since my arrival, but I could not see them. A close friend in New York gave me back my love of Los Angeles because of her concern for me and belief in me and another part of my reality came into focus — I began as a child-writer here, not in Manhattan.

When I got back inside the apartment, I remembered a very cold and snowy December day in the Hamptons many years before.  Gail and I were on our way to a holiday party and were in the car alone.   The roads had been cleared and so we took a back route. There to our right we spotted a fox playing in the snow.  We were children ourselves in that observation, “it’s a fox” I whispered.  We stopped the car and watched the fox not at all sly, but in unbridled joy scampering through his white empire, unafraid and lushly protected by his heavy coat.  Was he as beautiful as I recall?  Was his fur that red? Could his tail have been that long and fluffy?  Probably not, but it does not matter.

There will be other holidays that might be less lonely than this one or that might be far worse.  There might be other years when I am sicker than I am now, or perhaps the long awaited remission will arrive.  There will be other meals and other times and conversations with this friend who has mattered.  There will be other moments when the realization of how fragile it all is comes sweeping over me.  There might even be a fox in the snow again.  It is the reality of the present and the sweetness of the memory of past happiness that brings me to close this year with hope.  The Irish writer and journalist Nuala O’Faolain wrote a memoir entitled Are You Somebody? It had great influence on me because I read it when I felt I was Nobody At All.  I was saddened to read her obituary in the New York Times in May of this year.  Although I knew she had been very ill, the news of her absence hit me.  My real sorrow was because of something she said in one of her last interviews: “…the world said to me, that’s enough of you now and what’s more, we’re not going to give you any little treats at the end.”

I wished I could have told her before she became so ill what I have learned about living the unwell life to the maximum, to the absolute last morsel of it. There are so many treats along the way of life no matter how ill or in how much pain we find ourselves. It’s our job to find them and to hold them close to us — from our deepest friendships to the memory of the fox in the snow drifts. And to remember to give treats large and small to as many others as we possibly can.

I conclude 2008 with a Theodore Roethke line that is probably everybody’s favorite Roethke but it seems the only way for me to say Happy Holidays, A Light Filled Chanukah and A Very Merry and Blessed Christmas.

“What Else is there to say? We end in joy.”

—Alida Brill

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Dec
9th
Tue
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The Triumphant Return of Mr. Rot


I’ve been in a rough campaign battle and I’ve lost – again. According to my personal polling results, it wasn’t even a close race.  I am not going to be elected The Well-Woman with at least a four-year term guarantee.

I call my autoimmune disease Mr. Rot and he has returned.  He’s right back at my side, as close as he can get to me and is he ever triumphant!  He and I have been partners for so long it seems appropriate to give him a name. I have an atypical form of Wegener’s Granulomatosis, named for a distinguished doctor, who, unfortunately, was also a Nazi doctor.  There is continuing discussion in the medical community about changing the name of the disease. Strip him of his awards posthumously, but keep the name. If ever there were a Nazi of a disease, this one is it.  But, I just call it Mr. Rot. It suits his behavior. He feasts on my cells, munches on my tissues and tries to take away my chances for happiness and success.  Once again we are at war, with no end in sight.

I officially declared part of 2008 The Summer From Hell.  I moved from the bed to the couch to the hospital’s infusion room to admission as an in-patient inside the “Slammer” (my term for the hospital).  My jokes about my condition have grown lame.  I no longer have the energy to quip that, while others may think they are chic with trips to Italy, France, England or country homes, nothing beats chic like an August adventure in Manhattan from bed to couch to hospital.

I am sad and numb; but even as he steals my thunder, I stubbornly refuse to let him take away my humor.  Mr. Rot is fresh and combative.  Why doesn’t he get out of town?  What I mean, of course, is why can’t he retreat from my body this instant?  At the end of the summer I was ready to be finished — take the staircase to the next energy field or the celestial gardens – or whatever particular metaphor or theological belief about the after-life you prefer.  Good-bye.  Ciao. I was so over it all – putting up with Mr. Rot, being brave, having friends insist how heroic I was, or that they had no idea I was ill at all because I looked so good.   But, I didn’t get that hall pass to leave forever. It wasn’t as easy as I thought it might be for a few blessed moments in the hospital. I was spared to live another day or more, and tell more tales.  That’s what writers do. I write my stories with the hope citizens on the “other planet” will also find the courage to go forward or draw a laugh of recognition from our shared experiences.

I continue on with Mr. Rot, and as in any relationship gone stale, we have reached the stall-and-wallow stage. However, I do bow before his power and pay him respect.  I spend the rest of my spark plug reserve attempting to make deals with him. I just quietly and talk only to him, “Here I am still sick as a dog and weary. Let’s have an agreement, okay, Mr. Rot?” I tell him he could play fair just once. “Why don’t you go away now, really disappear, for just a few years, and then you can come back.  You’ve been far too constant a companion.”  As usual, his response to me is physical, never verbal.  If he could it would be a resounding rejection of my pleas — “No way.  I am used to you. Besides, you know something, Alida?  I’ve got to tell you, you’re really a great hostess.” 

My reality trumps words and witty nonsense and I must stare him down. What is wrong now is that I’m so sick of being sick. I am hiding out from almost everyone.  I thought by my silence I had given my friends a holiday from my troubles.  It turns out I frightened them. Why can’t my performance as Mimi end?  Can’t I just sing that last aria, collapse, die, and get off the stage?  Get the hook. This Mimi is ready. I know I am ready. Curtain, please. But, just as I’m convinced I’ve had it with my life, I worry I might miss something.  Maybe I’m as unstoppable as this disease after all.

Now I am searching for a plateau named acceptance but do not wish to journey to a place called complete resignation.  I am as worn out emotionally as I have ever been.  A friend asked me whether there was a danger I would become bitter because of the disappointment of not having a real remission despite the treatments. “Bitter would take energy, wouldn’t it?” I respond in my well-rehearsed theatrical role as “Sarah Heartburn.

I might well be on the road to bittersweet, which is not a good destination for an aging woman with a seemingly vigorous disease.  Why is Mr. Rot so healthy and robust as I grow older, exhausted and sad in a way that takes words from me?  Without words do I exist at all?  A more terrifying philosophical concept sweeps through my brain-filters…without Mr. Rot do I exist at all? 

I wonder if I will finally succumb to what I have fought against since childhood.  Will I become a set of symptoms and manifestations of disease, totally eclipsed by Mr. Rot? Will he have the last laugh, the last dance, or in the worst-case scenario:  will he steal the very last word from my lips, or hop on my laptop and write my last lines.  He’s very crafty and he might well do that.   –But not just yet.

-Alida Brill

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Dec
8th
Mon
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About the Authors

Alida Brill is a feminist social critic who has written on such diverse topics as medical and sexual privacy, the ethics surrounding the right to die, the role of gender in society, tolerance and prejudice and the conflict between the personal and the public. See her website for more.

Michael D. Lockshin, M.D. is one of the world’s leading experts in the long-term care of chronically ill people.  He is the Director of the Barbara Volcker Center for Women and Rheumatic Disease at the Hospital for Special Surgery in New York City.  He is Professor of Medicine and Obstetrics/Gynecology at the Weill Medical College of Cornell University. He serves as the Editor-in-Chief of the journal, Arthritis & Rheumatism.  In November of 2008, the New York Chapter of the Arthritis Foundation honored him with the Lifetime Achievement Award. See his website for more about his work, writing and research.

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