Dear family and friends,

I've tried to say this out loud many times, and I always get too tired to finish. So I'm writing it down, a little at a time.

I know I look fine. That's one of the hardest parts of this illness. You see me at church or at a birthday party, sitting up and smiling, and you think I must be getting better. What you don't see is that I rested all morning to be there, and that I'll probably spend tomorrow in bed because of it. I'm not pretending when I'm up, and I'm not pretending when I'm down. It's the same me, on different days.

When I cancel plans, please know it isn't because I don't want to see you. I want to see you more than almost anything. I just have a very small amount of energy each day, and I have to spend it like a person with a very small paycheck.

When I forget what you told me last week, or lose a word in the middle of a sentence, or ask the same question twice, it isn't because I wasn't listening. My memory is one of the things this illness took. I miss it too.

Please don't tell me I just need more exercise, or a vacation, or a better attitude, or the vitamins your coworker's cousin takes. I know you mean well. I've tried a lot of things, with my doctor. If you want to help, just ask me how I'm doing and believe the answer.

Here are some things that do help:

• Visits that are short, and when you tell me it's all right if I need to lie down while you're here.
• A casserole I can freeze.
• Rides to my doctor's appointments.
• Phone calls where you do most of the talking. I love hearing about your life.
• Inviting me anyway, even when I usually say no. Someday I'll say yes.
• Not keeping score.

I'm still me. I still laugh at Bill's awful jokes and I still know every bird that comes to the feeder. I still care how your kids are doing in school. I'm just doing all of it lying down more than I used to.

Thank you for staying. Some people didn't, and I understand, but it means the world that you did.

With all my love,
Lorraine

Written in six sittings, February 1999.
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Last updated September 10, 1999 · back to Forty-Three Steps