Thursday, April 4, 2013

Life With a Terminal Illness

I’m trying to find a live liver donor who would be willing to put his or her life on the line for my life. My life is going nowhere at this point. Just downhill. I don’t like to think about it.

I beat all my records this morning. I thought I was getting up at 2:15 am (bad enough, right?), but it was 1:30 when I sat down to write. That means after all the fatigue I had yesterday, the naps I took (about 2-1/2 hours) which usually ensure a restful night, I slept all of 3 hours last night. Hell, it’s still night!
Now what? I usually feel tired when I get up, even at 4 am sometimes, but this morning I feel…rested. How can that be? I feel frustrated because there’s no one to call, I can’t write in my notebook, I’m not interested in reading anymore, and I’m just listening to rainstorms and birds singing on my iPod dock and watching my candle glitter in the semi-darkness.
I like getting up in the dark. I’ve been doing it since 1992 when I began writing every morning. Put my coffee on a timer, got up at 4:30 am without an alarm (except the one going off inside me), lit a candle, put on a tape of writing prompts and listened for about 5 minutes, then wrote for at least an hour. Sometimes I also began by doing some artwork with colored pencils and rubber stamps.
Now, with liver disease, and steadily increasing hepatic encephalopathy (HE), I am not interested in cognitive thinking, or even in writing poetry most mornings. My handwriting has also deteriorated and is quite difficult for me. I can still write on the computer.
I don’t like the progression of this liver disease I’ve had for 7 years now. I never expected something like HE. What do I want for my birthday, for Christmas? A new liver. A new chance at life. That’s what I think about a lot. 

I’d rather be finishing Anna Karenina (about halfway through now) and reading more poetry. And I want to be writing and expressing myself. I feel like I express myself only halfway.

The other day I went to see a psychiatrist. What I’m going through now with facing down a terminal illness is the hardest thing I’ve ever done. None of it is getting easier. People find it hard to believe that I feel happy. But except for my recent “battle” with Social Security, I do feel happy every day and I make plans for my future. I plan on living. That’s the bottomline. I just want my life to have a better quality now and in the future for a long, long time.
First things first – I want to sleep longer at night. At least 6 or 7 hours. That would be really nice. And not have to nap during the day.
I want my handwriting back. Whatever that takes.
I want to make money from working. Working hard. I like it.
I want to work as a freelance writer and editor.
I want to hike and stay up till 10 pm, not just because I’m delaying going to bed so I can sleep later, but just because it’s normal for me.
I want my lively, active, dancing writing reading walking hiking life back. I don’t want to die while waiting for a transplant. I am, admittedly, afraid deep down inside.

I never ask for this: I’m asking you to pray for me. A simple prayer – Help Dana. Please. Thank you. And thank you.