Monday, June 27, 2011

In Which, With Trepidation, I Broach A New Topic

A number of people who know me well have asked, "Why don't you write about CFS?"  Although Chronic Fatigue Syndrome is the central factor of my existence, and has been for many years, I have mentioned it in passing but I have never really written about it.

The truth is that, whenever it lets me, I like to forget about the thing.  After sixteen years of it, I can hardly tell you how much it bores me, and I can imagine how it must bore those who hear about it.  I disclose it to new acquaintances only on a need-to-know basis, such as when at the last minute I have to cancel going somewhere with someone.  They are invariably surprised when they find out I have CFS.  "You?  But that can't be!  I'd never have guessed it."  That's o.k. with me.  I like to pass.

And that is what I have been doing in this blog, mostly out of fear of boring you, my readers, to death.  But lately I've started to think that maybe this well-intentioned pretense that I lead a 100% idyllic life on my Vermont hilltop ignores a major portion of what makes me who I am.  Besides, with 800,000 people in the U.S. alone having been diagnosed with the illness (and who knows how many more wandering around wondering what is wrong with them), what I have to say might prove helpful to someone.

These days, I do very little reading about CFS.  A couple of times a year I scan the medical literature to check if there is something I should mention to my doctor (there usually isn't).  I have found that a steady diet of the stuff literally worsens my symptoms.  There is a lot of writing being done by CFS sufferers themselves, and that too I tend to ignore.  Quite often it is a depressing catalogue of assorted but very real miseries, and filled with anger, mostly justified, at the medical establishment. 

My writing about CFS will necessarily mention at least some of its miseries.  But there will be no anger.  I have been lucky in that, since I was diagnosed in 1994, I have not encountered a single insensitive or skeptical doctor.  Although they have not been able to cure or even alleviate my symptoms, and some have erred on the side of over-medicating, the doctors I have consulted have been well-intentioned people trying to deal with a condition for which no cure exists.  And I have been extremely lucky in that from the very beginning colleagues, family and friends have done what they could to help me.  Best of all, they have believed me, even when I haven't believed myself. 

These days, I think of living with CFS in existential terms.  The disease brings into relief many basic questions relevant to the human condition.  For example, if action is essential to my being, what is left of me when I cannot act?   How do I live when, as I fall asleep at night, I don't know whether the next day I am going to be bedridden or "fine"?  Where exactly is the line between acceptance and defeat?  You get the idea.

I am at the moment just coming out of several days in relapse.  It's a dangerous time because I tend to try to catch up on all the things I've wanted to do, such as writing on this blog.  I have to remind myself to stop even when I would like to go on.  Which is what I'm doing now.

11 comments :

  1. I wonder if, in the end, this will be what Leo's godmother is suffering from. She has no answers to a 3 year old question of "why am I so exhausted?" She's a physical therapist and when I've mentioned this, she dismisses it because she wants, as she puts it, an answer. She wants it to be hypothyroidism or an adrenal tumor or something wrong with her kidneys...she's on doctor #7, seeing the chief of staff at a local hospital now, but he doesn't know the answer either.

    The unknowing seems the worst.

    BTW, in other news, now that I've seen your picture on facebook, I am astounded at how much (identical, really) you resemble my aunt Gracemarie (her maiden name is Ortiz). She's from Laredo and has always made a clear distinction when the subject comes up that she is Spanish, not Mexican. I guess I'm going to have to believe her now, seeing you.

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  2. A diagnosis IS an answer, hard as it is to take. Has she seen this: http://www.cfids.org/webinar/cfsinfo2010.pdf Feel free to steer her to me (lali@laligallery.com) if it could help in any way.

    So proud to resemble your aunt from Laredo!

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  3. I'm glad you are doing this. Fascinating!

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  4. I admire you for writing about it, and for achieving so much with CFS. I know it can be hard writing about something that affects your daily life, but which you don't want to define you.

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  5. You've put it in a nutshell, Mali: something that affects my daily life but which I don't want to define me.

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  6. i wrote about this years and years ago, when i was a reporter in duluth and when the disease was first becoming known. any chronic illness, this one included, changes a person's life dramatically. i think in addition to managing it, all you can do is look for the silver lining----the understanding that life will take on a different, sometimes much slower pace, and to find the good in that.

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  7. Thank you for that long-ago article, Laurie. The press has played, and continues to play, such a crucial role in raising awareness of CFS.

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  8. Or rather, instead of an answer, she wants an answer that indicates a solution (medication, surgery) instead of lifestyle and habit changes.

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