The fatigue that you get from hepatitis (and I imagine cancer, cardiac conditions and the like) is not like being tired. If you’ve never experienced medical fatigue, you have nothing to compare it to. Before I became ill, I often worked overtime. I once worked 14 hour days for three weeks straight without a day off. I was wrecked, but it was not the same as this fatigue. With hepatitis C, I had four or five hours a day of normal energy, then I was like a cartoon character hit by a concrete roller. The fatigue took your brains as well as your body. I remember driving home from work one time thinking, “This is the last time I’m driving a car when I’m tired.” I couldn’t tell what those other cars were doing, whether I had time to change lanes or not. I did not move until there was nobody anywhere near me. I was working half days, and if I got distracted and didn’t leave before the fatigue set in, I had to wait lying on the folding futon my husband had bought for my cubicle. I had a friend who lived close to me, and when he left at five, he would drive me home and walk to his own place.
I was not only still working, I was writing for our own publication. I could not compose and type at the same time. It used two parts of my brain which could not coordinate. I wrote one of my best pieces, about the witch hunt for satanic child abusers, lying in bed with my eyes closed, dictating the text to my husband. I had to close my eyes. If I processed vision, I could not think of language. I could not drive, of course, and I had trouble with other activities requiring short-term memory or the ability to move and analyze at the same time. I have written in another piece about how I set fire to our kitchen stove to discourage a mouse who had taken up residence.
I was bored for the first time in my life. I could not read. I could not lift my head. I could not sit up to watch television. I lay on my bed, nearly 20 hours a day, doing nothing, feeling more and more discouraged. The mental component was not only cognitive. There was a weakening of volition. I simply didn’t want to do anything. It was hard to care. If I needed to pee, I might lie in bed for two hours working up the will to walk to the bathroom. I often had to lean on walls or whatever was handy. Sometimes I lay in bed thinking I was going to die, because one day it was going to be too much trouble to breathe.
Once, a friend asked me to go with her to a traveling exhibition of Inca artifacts. “I decided that you’re the one I really want to do this with,” she said. I could not refuse; she was too excited. My husband drove us all to the park where the museum was, and we had to park blocks away. The line was like those for blockbuster movies. Fortunately, part of the line moved up the museum steps. I could advance on my butt, step by step. When we were finally inside, I could not stand, much less walk around the exhibit. My husband, who is a block of muscle and not much taller than me, put his arm around my waist and lifted most of my weight off my feet. He carried me around the entire exhibit. We must have appeared like a particularly in-love couple.
But I still worked. Even working half time, I wrote my computer manual, the one my boss submitted to the Northern California Society for Technical Writing’s manual contest. I won a second prize, but I was not present at the banquet, being home and in bed. For some unfathomable reason, no one from my company had the wit to accept the prize for me, so I only heard about it.
The motivational factor could work both ways. I could do things beyond my strength if I were highly motivated. I was an expert in the publishing software we used, and they had invented a feature — conditional text, for those of you who’ve used FrameMaker — that would let us write a single manual for all the different computer systems, turning on and off the information for each one as required. I studied the new feature and developed the protocol for using it without getting the different information confused. My boss asked me to teach a class and I agreed. There were too many tech pubs employees to teach one class, so I had to do two back-to-back classes. I thought I could do this within my period of normal energy.
I had a lot of trouble finding a classroom at the company to teach my classes. We didn’t have laptops back then. The training department declined to let me borrow a room with machines. Only the sales department was kind enough to lend me a demo room. Each student would not have a working computer; there would only be a projected computer screen. Still, I was grateful. However, on the day of the classes, the door was locked when I got there and no one I knew in Sales had a key to let me in. Fortunately, I had recently gone to bat for the janitors, who were contract employees, and as a result of my agitation, the company had agreed to give them medical benefits. The janitorial supervisor let me in. He would have probably opened any door for me.
I had to hurry to set up because of the time spent getting in, but I was ready when my first students arrived. Then, five minutes into the first class, the demo computer went down. I called IT, but they said they could not get someone down there for half an hour. I had no pull with anyone but the janitors. Meanwhile, fifteen people were sitting, waiting for something to happen. I might have cancelled the class if I had not caught sight of a large easel with an artists’ pad on it. The class had their hand-outs with their exercises on them, so I drew each screen they would see on the easel as they did their exercises. I had been supposed to sit for two hours and type into a computer. Instead, I spent two hours on my feet, doing the most animated presentation of my life, actively drawing page after page. The class was with me. The gave my class the highest ratings.
Fortunately, IT was able to fix the demo computer by the time the second class started, and I was able to sit down. I still had energy for the second class. But when it was over, I had nothing left. I called a friend. “Please come and break down this room for me. I can’t even sit, I have to lie down immediately.” My friend was a good sport, and plus I had had a hand in getting him hired. He good-naturedly supported me back to my cubicle, where I stretched out on my folding futon, then went back and cleaned up the demo room. I was taken home by my husband, and slept for the next 24 hours, missing a day’s work.
I got a mediocre yearly review, in spite of winning a prize for my manual and moving tech pubs to conditional text. I was outraged. My boss explained that I missed too many meetings. It seemed an absurd, punishing reason and made no sense to me. It showed me for the first time the brutal and shallow nature of corporate culture. Somehow, I kept going.
And then, many months later, I started to feel better. There were days I felt normal, physically and mentally. These were interspersed with days of extreme fatigue. I no longer had fevers. The bad days were fewer and fewer. Finally, I had two or three weeks without a bad day. It was a year later and a half after the trip to Washington, and I was beginning to think I had recovered. I wanted to prove it to myself.
I have many good qualities. Self-preserving moderation is not one of them. I tried to exercise and couldn’t; I was too weak to do anything in proper form. So I invented an exercise where I sat on the floor and stood up again, then sat down, then stood up, over and over. It’s extremely challenging, but form doesn’t matter. I could do it as awkwardly as I needed do. That’s how I brought myself back to normal strength. Whether that meant I was superbly fit was another question.
I had gone camping exactly once in my life and hadn’t liked it. Though it was a completely hare-brained idea, I asked my sister to take me backpacking. If I could backpack, I was well. “Um, are you sure?”, she asked. Sure I was sure. She agreed to take me on a short backpacking trip in the Desolation Wilderness of the Sierras, no more than five miles, though a mile or so of it was up a very steep and rocky trail. The trail led to a small, hidden valley, with two rock walls facing each other separated by a small lake. I had no trouble hiking in and carrying a modified backpack load of 20 lbs. We went with two friends, one of whom had an old hippie dog; you know the kind, white snout, wears a red bandana around his neck for a collar.
We were there for two days. The place was nirvana. The second night, though, was unexpected. Around five in the morning, I thought I felt my sister shaking me awake in our tent. I awoke perplexed, then quickly realized it was an earthquake. No big deal to someone from San Francisco. Then we heard the rockslide. We tried to remember exactly where we had set our tent up, how close to the rock face. The sound got louder, closer. My sister and I put our arms around each other and said, “I love you.” We thought it was the last thing we would ever say.
Then the world stopped shaking and the mountain stopped raining its rocks down and we all got out of our tents. We were shaken, me apparently more than anyone. I was for immediately packing up and hiking out. The others decided to move the tents to safer locations and get more sleep. It was 10 a.m. before we were finally packed and ready to start out. Poor timing. It started to snow. Not a sprinkle, a real snow storm. By the time we reached the steep, narrow, rocky trail, the snow had obliterated it. Fortunately, we had a smart dog with us who picked out the trail. We climbed down very carefully. When we reached the bottom, we picked up speed, pushing ourselves with the snow blowing in our faces. When we reached the cars, I was euphoric. Nothing could kill me. Nothing.