Ellen Schecter's Blog
June 26, 2012
Fierce Joy
Fierce Joy, my memoir, began as notes in one of those $1 black-and-white speckled composition books we all used in elementary school. I was sick and I didn't know why.
And then I found out: I had either systemic lupus erythematosis [SLE] or a rare neurological disease, chronic inflammatory demyelinating polyneuropathy [CIDP]. It almost didn't matter which: they were incurable and, I soon learned from the neurologist who was diagnosing me, hard to treat.
"So what's the best and worst case scenario?" I asked her.
"The best is that you'll get better on your own. The worst--is death."
So I used my notebook as if I were taking a very important graduate course in--life or death.
It soon filled with lots of questions, and few answers.
At that point, I figured that the sooner I found the right doctor at the right hospital with the right magic bullet, that would be it: I'd be cured--or if not cured, slammed into the state of grace called remission.
So I thought I was hot on the trail. Until I had to think again. And again.
And in my spare time: I was head writer on a show called Reading Rainbow, and I had two young children. I gave up lunch so I could make my calls,
and wrote about my thoughts and feelings only after our apartment was full of sleep....when I wrote about things I couldn't talk about, even to my husband. Like--how did I feel about possibly dying?
And then I found out: I had either systemic lupus erythematosis [SLE] or a rare neurological disease, chronic inflammatory demyelinating polyneuropathy [CIDP]. It almost didn't matter which: they were incurable and, I soon learned from the neurologist who was diagnosing me, hard to treat.
"So what's the best and worst case scenario?" I asked her.
"The best is that you'll get better on your own. The worst--is death."
So I used my notebook as if I were taking a very important graduate course in--life or death.
It soon filled with lots of questions, and few answers.
At that point, I figured that the sooner I found the right doctor at the right hospital with the right magic bullet, that would be it: I'd be cured--or if not cured, slammed into the state of grace called remission.
So I thought I was hot on the trail. Until I had to think again. And again.
And in my spare time: I was head writer on a show called Reading Rainbow, and I had two young children. I gave up lunch so I could make my calls,
and wrote about my thoughts and feelings only after our apartment was full of sleep....when I wrote about things I couldn't talk about, even to my husband. Like--how did I feel about possibly dying?
