My MindChronic Fatigue Syndrome does things to your mind. It can lower your IQ by as much as forty points. Short term memory is almost nonexistent. I watched it happen, as if I could stand outside myself, as if my mind was assessing my mind.
When I first got sick, I thought it was a bad case of the flu. After several weeks of no let up, I thought I had a bad case of mononucleosis. I had had it in college and this felt very much like it, only worse. I had malaise, aches and pains, a sore throat and a low grade fever. I was extremely exhausted and walking felt like wading through jello. Between doctor's appointments I lay on the couch.
What a great time to catch up on my reading, I thought. By the end of the second book, I noticed that I had to reread pages, paragraphs, that I didn't know what I'd just read. It became a strain to read at all. I love doing crossword puzzles, but I had already noticed that I wasn't able to finish them in ten minutes like I was used to doing. Some days were worse than others. If you're a crossword puzzle fan, you know that if you put the puzzle aside when you've gone through it once, you can pick it up later or the next day and simply finish it - just as if some part of your mind had been working on it the entire day without your awareness. I've always marveled at that. But now, picking it up later didn't help. I couldn't finish. As the weeks wore on and I wasn't any better, I noticed that my ability to solve puzzles grew even worse. Huge gaps in the puzzles. I had the feeling that the word was right on the tip of my tongue or my mind, but I couldn't retrieve it for the life of me.
I'm usually pretty good at remembering names. Not now. I watch TV, see some actor I've seen many times before, say Jeff Bridges, and not be able to remember his name.
With a feeling of great frustration, I ask Jim to tell me. The first few times I did this, he looked at me with surprise. I'm usually the name supplier. Not more than ten minutes later I think, "What's that actor's name again?" I struggle with this for a few minutes, using every technique I can think of to try to recall the name--what Jim looked like when he told me, the movies I've seen with this actor--but although I could see the movies in my mind, I couldn't remember the names of those either.
I understand why that woman committed suicide last year after getting a diagnosis of Alzheimer's. By now, I've read quite a bit about Chronic Fatigue and know that it affects the brain. One publication sent me by the CFIDS Association (Chronic Fatigue and Immune Dysfunction Syndrome) had articles which discussed EEGs which showed that the temporal lobes slow down with this disease. (CFIDS Association address: PO Box 220398, Charlotte, NC 28222-0398)
But CFS patients get better, they say. It's not a progressive disease. I'll just have to wait it out.
I'm a photographer and a writer. Since last January, when I got CFS, I haven't had the energy to stand in my darkroom printing or even to take pictures. My photography work is on hold. I've been writing poetry reviews, essays and short stories for years. Early on, I accepted the fact that I wouldn't write a short story for a while. Then I got nervous. What if my editor at Contact II sent me books to review? How would I manage?
It was in June, five months after I got sick, when I was sent a book to review. It was called Raven Tells Stories: A Collection of Writings by Native Alaskans. By then, my crossword puzzle ability had improved slightly, very slightly. I still wasn't able to read a novel, much less the academic journals I enjoy so much, like Signs, Representations and Human Sexuality. How would I manage this? But to my surprise I was happy to have a new book to review. Perhaps, I thought, it's a good sign that I'm excited to begin this one.
I took copious notes and read the poems aloud to Jim. I even looked in my journals for relevant articles about Native American cultures. Since I have only a couple of hours in the morning when my brain seems to function, I used this time only for the book. After a few days of note taking, I sat down at the computer to transcribe them. This is the way I've always worked. Read the book, take notes and then put it into the computer so that I can add to them, move them around as necessary and so gradually build the review. But, as I read the notes I had taken, I saw that they were meaningless. I threw them out.
I was shocked and very upset. I felt like crying. My mind was that far gone that I hadn't taken coherent notes. What was I going to do? How could I have written such nonsense? The notes said nothing of substance. I didn't have the basis for any kind of review here.
I started again the next day. I wasn't going to give up so easily. This time, I sat down at my desk with the book, in front of the computer, and began. I had to literally clear everything off my desk other than the computer and the book. I took new notes, telling myself to read very carefully, pay attention, and most of all, to be sure to stop as soon as I got tired. My instructions to myself worked. I've never taken so long to do a review and I don't know how I did it exactly, but I had found a different way to concentrate. I could not sit on the couch, the chair, or lie in the bed to read, to take notes. That didn't work. I had to do it this way, at my desk, sitting upright, in front of the computer, with no other distractions.
When I put all my notes together, I realized that I had gone over the same sections twice and made almost identical notes each time. My memory wasn't serving me well at all. Two sets of notes about the same material! But, at the end, despite all the unnecessary repetition, the review was done. And it made sense.
I gave it to Jim to read. "This may be the best one you've written," he said. "It's completely clear, not as complex as your reviews usually are."
"Is it too simple?" I asked.
"No, not at all, it's good, very good."
Since then, I've written two short stories. I used the same technique--clear the desk and write directly on the computer. A friend of mine who regularly critiques my work said that my writing has become terser and clearer. She says I've improved, she likes it better now than before.
The puzzles still rarely get done, but they are closer to it now on some days. I still don't remember the names of actors. When I've told friends about this, they laugh and say they have trouble remembering things, too. Just a sign of aging, they say. I'm fifty-three and certainly one's short term memory doesn't improve with age. But no matter what friends say, what they're going through is nothing like this. I'm not like I was before, eleven months ago.
I've said that I only have a few hours in the morning in which I can work with any lucidity. What to do the rest of the day? I doze on the couch. I watch some TV. I try to do crossword puzzles. Then, for my fifty-third birthday, my son Tom gave me a most wonderful gift, something which has made a big difference in my life. He bought me a modem and the software for America Online. A modem connects the computer to the phone. The software is one of many on line services available, like Compuserve, Prodigy and Genie.
Once Jim helped me set it up, I was able to tap into the most marvelous means of communication. Suddenly, I was no longer so cut off from the world. I could talk to people all over the United States. Best of all, I discovered that I could do this at any time, even at night when the rates are lower. For some reason, this does not require the same kind of concentration as reading or writing. It's more like talking.
I now belong to several writers workshops on line, get stories uploaded to me weekly and send my critiques to the members of the various workshops. Most of the stories are not terribly good, but the critiquing seems to have sharpened my mind somewhat. By saying what is wrong with a story, I've learned to be more critical of my own writing.
Also, I've developed some interesting friendships with people I've never seen. I look forward to talking with them, and taking part in group discussions. I've even organized a women's discussion group, called The Women's Room, which meets every Thursday at 9 PM for an hour or so. What an amazing thing this is! How grateful I am to Tom for thinking of this for me.
Last but certainly not least, because of being on line, I'm in touch with other people who have CFS! We compare symptoms and solutions. Though there are no cures at this point, it's helpful to know what people have tried and how they manage. Also, America Online has a software library. I've downloaded some software which enables me to connect with bulletin boards around the country. There's even a Chronic Fatigue Bulletin Board. This lists the latest information on CFS.
Now, as I sit here at my computer typing, it's 2 PM and I'm exhausted. I'm starting to feel shaky, which is what happens when I've overdone it. Time to lie down now. I'll take today's Times and try to do the crossword puzzle. At least it'll tell me how my mind is today.
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