Wednesday, October 01, 2008

The hardest thing the unpredictability. Today was really low-energy: I went to class, but was only physically there. I didn’t want to talk to anyone. And I took a three-hour nap in the afternoon. I wanted to go to a Race and Religion forum in Alameda tonight, but I knew that if I went, I wouldn’t get Friday’s prayers written or a field ed journal (due last night at midnight) done. I don’t want to do them now; I want to go back to sleep.

I haven’t done the field ed journal because I had a headache from hell all day yesterday. By the time I remembered it, I had four hours—but had just come in from a workshop and was way beyond functioning. I went to bed, instead. The headache was directly related to interferon. The symptoms I get are exhaustion and soreness. I also hadn’t drunk enough water.

Today was supposed to be a functional day—such as I have them. I don’t know whether I was still affected by yesterday’s headache, or doing some honest-to-God work on Monday wore me out. That’s the thing—I have to listen to my body, but I don’t always know how to work with what it’s telling me. I have to learn to find capability within disability—but I never know what my limits are going to be. I can’t necessarily keep to a plan.

I still look fine. But I’m not. I honestly miss the days when my faculty would yell at me for having late work. I fully deserved it, and I knew it, no matter what I said at the time. But I was completely capable. Nobody would ever treat me that way now. They know I’m doing well just to go to class, for heaven’s sake.

For awhile I was afraid of trying, academically, because I was afraid of not being able to think or process or read or write. I broke that barrier the day I read for an hour, told my advisor, and she cheered for me. I don’t have to be brilliant. I just have to show up. The expectations that weigh so heavily on my peers, are not on me.

Nobody else tries to do chemo and school. I mean, come on. This is new for all of us.

I’m really behind on one particular thing. I know I could ask the faculty to step on me, and he would. (I already fear trying his patience more than I have.) But it wouldn’t help. This isn’t a self-discipline issue. The assignment itself is negotiated down as far as makes sense. He’s given me tons of grace already. I just need the energy to work on it. I did that for an hour the other day. I worked at the limits of my concentration. Gave myself a headache. But it felt so good to be able to try.

I need a few more hours like that. And today, I just felt like a turtle. My shell was down. It was not coming up, for the world. I didn’t feel ill—I just had no energy. I couldn’t engage with anybody or anything, and all I wanted to do was sleep.

I expect to be sick tomorrow; I took the shot tonight. But today, I really wanted to do my work.

Some days feel so positive. Some other days, I’m close to crying just from frustrated tiredness. The hard thing is not knowing, which day will be what.

I’m working on balance—being kind to myself, doing what I can, not pushing myself too hard and not coddling myself either. It’s hard, when I owe people projects. And when I know how much they’ve stretched for me.


Caminante said...

Sounds like a tai chi balancing act your health has become... prayers for you in this unsettling, unpredictable time... and for your tears that they can be healing.

it's margaret said...


Like what caminante said.

And did you congratulate yourself for getting up, dressing and doing what you did do? Give yourself a stroke every now and then dear one.

Jane R said...

Good for you for motivating yourself and for "being there," which is an achievement in itself!

One of my students (an adult student, ca. 40 years old) was diagnosed with Stage Three breast cancer over a year and a half ago, not a happy diagnosis, and went into treatment including chemo and surgery. (I believe she had radiation too, it may have been over the summer when I didn't see her.) She had no insurance but managed to get covered (state/federal) as an indigent person and get the care she needed. I watched her bravely come to class --and miss class-- and watched her hair and head covering change (she did the wig thing for a while), over two semesters. She struggled through, sometimes not finishing assignments, sometimes managing. This fall she is back, with hair grown in, and in one of my classes again. I rejoice every class because she is now able to be there all the time! And she gave a great presentation the other night, sharing with me afterward that her brain feels like it is starting to heal. (She's a science major and has this amazing combo of feeling what she's feeling and analyzing it scientifically.) So I share her story with you because people --as Margaret knows well from her own experience-- do make it through. For now, step by step, just be very good to yourself. The stumbling and fluctuating energy and unpredictability are very hard. Be good to you, know that Godde is holding you. Keep us posted.