Tuesday, December 12, 2017

My book saved someone's life

Five years ago, I self-published the second edition of a book I’d originally written with my friend and associate Lauren Gellman in 1998. The first edition, which was published by St. Martin’s Press, was out of print, and I didn’t want to go through the long, grueling process of finding an agent and publisher again. So I went ahead and published an electronic second edition on Amazon.

After a few months of promotion, during which I gave away more than 15,000 copies, I turned my attention to other projects. I stopped reading the reviews on Amazon — until yesterday, when for some undefinable reason I decided to see if anything new had popped up.

The book is Chronic Fatigue Syndrome: A Treatment Guide, 2nd Edition. At the time of its first release in 1998, there were no other books on the market focusing on treatments for the disease, which is not only difficult to treat, but permanently disables about a quarter of the people who contract it. (In the late 90s, the press was still calling it “yuppie flu.” It is properly called myalgic encephalomyelitis.) The book was groundbreaking. But only 5,000 copies were sold. The book’s release was, as a British friend of mine put it, “Silent as a pee in bath.”

The second edition was about twice as long as the first. (One reason I published the second edition as an ebook was that nobody would have been able to afford, let alone lift, a 750-page book.) I put a year of work into it, which I chalked up as a “labor of love” — something that was a noble effort, if ultimately unacknowledged.

All of that changed yesterday. Below is the review I found of my book. I don’t know this person. I will never meet this person. But my heart was torn when I read this review on Amazon.

They say that if you reach even one person, it makes writing worthwhile. In this instance nothing could be more true. Someone Astonishing, I did it all for you.


By Someone Astonishing on January 4, 2017

I’m wiped out. That’s how I feel right now. And pretty much most of the time . . . for the past 26 years. I had toyed with the notion that my malady might be Chronic Fatigue Syndrome, but I already had so many weird, random, all-in-my-head symptoms, that I hated to bring it up and sound like even more of a hypochondriac to my doctor. Admittedly, I used to be more assertive and push for doctors to hear me: there was more wrong with me than a constant string of random, unprovable, seemingly-unrelated symptoms. But, I always came away with a psych referral — not a diagnosis. So, I grew leery of bringing up more than the manifesting symptoms. But, I’ve been with my doctor for ten years; if I was really sick with CFS, wouldn’t she have realized it? She already diagnosed me with fibromyalgia years ago (often a dual diagnosis). Wouldn’t she have caught on? After all, I constantly complain of fatigue and malaise, as well as all the other hallmarks. Well, the answer is a resounding NO. The medical community cannot be counted on to recognize or even believe CFS exists.

So, I struggled with the brain fog and read this book to try to help myself. All of my “imaginary” symptoms? Every one of them is described in this book. Here were my decades of misery and depression laid bare. I was now able to put together a clear picture of my illness and present it to my doctor. She heard me out and actually agreed with my diagnosis. And, although there’s nothing more we can do than treat the symptoms as we have been, I feel better. No, wait, I don’t feel better. But, I do feel free.

I no longer doubt myself. I don’t question if my symptoms are real. I don’t blame myself or fitness level when I’m out of breath and can’t do things. I’m not constantly pushing myself, trying to do everything like “normal” people can (and like I thought I should). I no longer work myself to the point that it takes 4 days to recover from 1 afternoon. I’ve accepted my limits and am making sure that those closest to me accept them, too. For decades, I was ruthlessly mean to myself for being lazy or overweight or out of shape. Everything was a failure on my part.

I’ve been miserable; I was beyond depressed. This book literally — and I do mean literally — saved my life. I couldn’t have forced myself to go on much longer. Yes, I am saying that I would definitely have been a suicide statistic. But, I gained power from reading: power to name my tormentor, power to stop blaming myself and power to find some inner peace.

Now, I follow the stellar advice, found here, of planning what I intend to accomplish each day and then do 75% of it. This remarkably simple tip has helped me reshape my life. I make it through my day unfrazzled, and still have something left for tomorrow. My experience with this book has been wonderful. I wholeheartedly recommend this work to anyone wondering if they might have CFS or to those just wanting to gain a better understanding of the syndrome. It’s an extremely thorough and well-written treatment of the subject.

Now, I thank you for reading my story, but I really am worn out and my shoulders are killing, but my attitude is soaring like it hasn’t in . . . forever. Time for a rest, friends.


Epilogue: I thought my work was over when I published my book, but since then it has only expanded. Someone Astonishing, like so many others, has nowhere to turn for help. One book was not enough, so I founded a national non-profit, the American Myalgic Encephalomyelitis and Chronic Fatigue Syndrome Society (AMMES.org). Its aim is to help patients find knowledgeable physicians, effective treatments, support, and practical assistance. There is hope.

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