Sirenita Lake

Sirenita Lake
San Francisco, California,
November 04
I am married in a committed, open relationship that is the anchor of my life. I'm a former high school English teacher, former software technical writer, and graduate of the late, great public interest law school, New College of California School of Law. I'm now on permanent disability from conditions that have finally eased up enough for me to begin exploring the world, at least that part which I can access emotionally, with the recklessness of a teenager. An important part of my life remains my work as a counselor for tenants with legal problems. The rest of the time, I indulge in outrageous adventures in sex and love, which I occasionally write about.


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FEBRUARY 23, 2011 2:12PM

Living with Hepatitis C – Part 2

Rate: 12 Flag

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. 

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I've never experienced medical fatigue, but it sounds similar in some ways to what one experiences after a long stint of speed use. In other words, absolutely horrible. But this:

"I was euphoric. Nothing could kill me. Nothing."

It's interesting, how going through a serious illness followed by a brush with avalanche death and a five mile hike through a snow storm, can induce such euphoria. There truly is something to the saying "That which doesn't kill us makes us stronger."
It sounds like your will and your creativity were so strong that you could not give up . . . amazing, Sirenita. And inspiring. Well done, and well written.
Nana, you know it. I also think that what doesn't kill us makes us more compassionate. I mean, how can I look down at people who fuck up their lives with drugs or drink when I came close to doing that myself. I just realized that I began and ended this piece with stories of euphoria. I yearn for that, however induced. Euphoria is what I live for, or at least, one of the big things.

Hey, Owl. Thank you so much, especially for your kind characterization of my foolhardiness. I really don't like a life of slouching around and I'm very restless.
We are a particularly in-love couple.
I've had a similar affliction but had no terrible effects till I got treatment; just some vague fatigue. I'm no doctor, but it sounds like depression or chronic fatigue syndrome. If not, and it is hep c, there's a protocol that is often successful, I've heard.
Mark, so true. I'm the luckiest girl in the world.

trudi, glad to meet you. Thank you so much for commenting. I have a definite diagnosis of hep C. I've tried a couple of the protocols. I didn't write about the second one, but it was hell. It's a vicious form of chemo. I shook, I fell down, the mucus membranes in my mouth tore when I brushed my teeth. If you failed the previous protocol, you are unlikely to succeed with the new one. People like me have about a 40% chance of clearing the virus, I suspect even lower for me because of how long I've had it. It's not worth it. As long as I don't over-stress my body, I do just fine most of the time. I live with it. I hope you're doing better yourself.
Thank you for this account, Ms. Lake. I must say though, my admiration for your strength and determination is tempered by disappointment that you would mention your appearance on the cover of Frighten the Horses without posting the photo or even a link to it.
For once I agree with Montana. Where's the pic of you with the .38?
I've never experienced medical fatigue and I can't imagine what having this feels like; the closest I can come is during the first trimester of my pregnancies when I learned the true meaning of the the description "bone tired." Because even my bones ached for rest. And no amount of sleep helped. I'm glad you've found a way to live with this chronic illness; when you say "the world stopped shaking," it sounds like that could apply to your own world as well.
Mr. Montana, I realize that an artist of your stature would of course be interested in the visual art aspect of this account. I had a bad scare when I thought we had sold every last copy of that issue, but my husband was able to unearth 3 copies from our basement archives. A friend has promised to scan this cover soon, but he's in the process of moving. I promise I will publish this photo as soon as it's in digital form.
Margaret, that was a brilliant comment. Yes, my world stopped shaking, for a while. Just as a guess, I think pregnancy and menopause come close to the kind fatigue I'm talking about. It's metabolic. Your body just can't produce the energy.
This was a very compelling story. And that exercise you made up where you sit on the ground and then stand up again? That is an excellent workout! You have to do that a lot in a level 1 snowboard lesson, which is an intense and exhausting two hours.
outrider, thanks for coming by. Maybe I made up a good exercise after all.
You are a survivor! "It showed me for the first time the brutal and shallow nature of corporate culture. Somehow, I kept going."

Damned corpratos! And Desolation Wilderness snowstorms, and hep C.

AND you and mark ARE... are a particularly in-love couple!
V. small image of the FTH cover with Sirenita here on the FTH page:
nice story. the earthquake seems like a cosmic synchronicity, that you picked that exact day to go camping. timing is everything. some esp wild people say you can never be in the wrong place at the wrong time. =)
Hi, tr ig. One day, I must ask what happened to your name. You have acquired an invisible letter, or maybe it's two names. Yes, damn them all, that's the spirit.

Hi vzn, yes, there is symmetry in the earthquake, the extreme experiences at the beginning and end of the illness. Good thought, that there's never a wrong time to be in the wrong place. I've survived doing that so far.
When I was diagnosed as pre-diabetic, after looking up the realities, I joined a diabetes support group and Beat the disease. Maybe this could be of assistance to You:
Thanks for the link, Mark. Sirenita looks as incendiary on that cover as I'd have expected.
Hi, Markinjapan. Thanks for the link. I never joined any groups because when I was sick, I was too weak to go anywhere, and when I wasn't sick, I didn't need support. Really, it doesn't have much effect, except for that one period, now such a long time ago. I thought I was pre-diabetic for a while, and it was a bad scare. I hope you're doing all right.

Deborah, thank you!

Nana, I thought I looked sweet and approachable. Hmmmm.
See, its things like this that are the reason I keep telling people you're stronger than I am.

And, Mark speaks truth.

Wainskote, You are being modest. I like nothing better than trading near-death stories with you. ;-)
Nothing like surviving an earthquake and a snow storm back to back in the Sierra to prove that you're damn near indestructible. R&R