Thursday, October 27


I spoke too soon. The day after last week's post, I woke up with a swollen throat and a heaviness that tells me the glass ceiling is going to be lower for a while. I phoned to cancel the day's plans before I got out of bed.

Most basically, that's what it's about, living with chronic illness. And it happens to me a lot because, even though I know I have to pace myself, my desire and drive inevitably gets the best of me, and I overdo. 

I get up to boil an egg for breakfast because I need protein, but something small and easy to digest or the burning will get worse. I make coffee too, because I can only handle so much deprivation. Then I consider what I am going to do with a day in which I should do nothing at all. Have you ever considered the difficulty of doing nothing? I say without hesitation that it is one of the most difficult things I have ever attempted, and after seven years of practice, I'm still an amateur.

I try to excite myself with promises of a whole day to catch up on new iPhone apps, or lose myself in a season of Parks and Recreation, or pick up that book I've been eying with envy for weeks without a page turned.

But I probably won't do any of those things because inevitably I realize I don't even use the apps I have now, that my smart phone is probably smarter than I; and I hate that groggy feeling of wasting hours watching Netflix offerings; and reading takes more mental energy than I can afford.

So I putter about, trying to find something that even a zombie could manage, but when I have a bad day like this (or two or four), I'm consumed by apathy and if I actually start something, I find it impossible to concentrate, and I'm without energy to finish.

I try to rest, but it's too late, I'm already in the burn zone when my body is quivering with energy it doesn't actually have. I'm baking from the inside out. And my mind is spinning with all the things on my desk, the completion of which suddenly seems very urgent. Lying in bed, I feel myself falling backward, hundreds of papers with scribbled writing topics and phone call reminders floating down on top of me. I actually feel guilty for being sick, again.

Friends call wanting to hang out and when I say "I'm not feeling well today," they say, "Oh, sorry. Is there anything I can do?" But there isn't anything they can do, so I go back to bed wishing more people knew how to do nothing, with me.

It's better than it used to be. I've come a long way and a few years since that first phone consultation with Dr. N. I've had a lifestyle overhaul. I'm not doing what I used to do, not making nearly as much money, and sometimes a ride on my bike and an afternoon nap feels like a very full day.

The adjustments hurt and chaffed at first, but gradually I changed, not just my pace, but my entire direction. I started doing more writing and less editing. I stopped taking sunsets for granted. And so changed my dreams. Most days I don't even think about who I used to be because I really like who I am.

I get up and go outside. Sitting on my front stoop, the warmth of the sun quiets the voices that say I need to be productive. When I was still baby-stepping into this season of my life, I learned there is no faster-acting medicine than a walk out of doors.

Six months after my diagnosis, I was sorting through old keepsakes and happened upon a picture of my college friend Amy and me. We were dressed up, I wearing a skirt and prosthetic arm under a deep blue collared shirt. But what struck me was the anticipation emanating from our faces--we were hungry for life. Looking at the photo, I suddenly remembered what it was like to be happy.

In a burst of desire and tears of relief, for the first time in a long time, I thought, "I want to live!"


[handicap #3, part 4 of 4]