Journal to a Muse

Busted!

I met a colleague and good friend today for lunch. She observed that

1. I hadn't put anything personal on my blog for quite a while
2. It was all painting

and asked if everything was going ok.

Well, the painting is what it is. And I enjoy it.

But my inner life... not so hot. I've committed to morning pages and J.Cameron's The Writing Diet. And boy has it stirred up a lot of "stuff." Jeez. But coexisting with the stirred up stuff are continuing side effects... and I don't know what these side effects "belong to." Aging? Obesity? Rx Chemo? Obviously (since I'm writing this at 4 am) my anxieties are impacting my sleep patterns. And my joints ache. Enough that I fear getting out of bed in the morning because of the ankle and hip pains I've been having. And there are (still) hot flashes and very sensitive skin. And everything smells (and tastes) like carbon monoxide most of the time.

Then I found an article in the paper that sort of explains how I'm having to change my thinking about my body, health, and the "fairness equation" (Although it is possible that my high fat, high calorie diet should have killed me long ago.) There is a possibility that when I am "finished with the treatment protocol" in 2 years, I'll be "as good as before." Of course I'll still be 5 years older, and if my symptoms are merely age related, I'm still screwed.

But I like Ms. Berlin's decision; To be hopeful. It's just that it is hard when you're sweating, limping and everything stinks.The friend who was best at being hopeful succumbed to her cancer... so not only am I missing a friend, I need a new hope-booster. I'm taking applications!

Here's the text of the article from today's NY Times:

Cases
When the Body Decides to Stop
Following the Rules By LOREN BERLIN
Published: February 26,
2008
Every day over breakfast, I fill three pillboxes. Fifteen pills in the
morning, 3 at lunch and 8 before bed, for a total of 26. To my surprise, I find
pleasure in the sorting, as it is one of the few moments when I can pretend I
have some control over the bizarre war raging in my colon.
When I learned 11
months ago at age 29 that I had a chronic illness, I understood that my life was
going to change. I knew I would stop eating certain foods, limit stress
and think more strategically about when to have children. What I didn’t
anticipate was the loss of control over my life that I thought I had, until the
gastroenterologist uttered the words “ulcerative
colitis.”
He explained that for reasons unknown, my immune system was
ravaging the walls of my large intestine, mistakenly trying to fight off a
nonexistent foreign invader. Short of removing the colon, he said, there was no
cure — leaving me to contend with unpredictable bouts of abdominal
pain, bloody diarrhea,
fatigue, weight loss, dehydration
and night sweats. Forever.
Before my illness, I didn’t realize I had been
operating on the assumption that there was an equation to explain how things
played out. It was almost like physics. If I followed certain rules, I would get
the desired outcomes. I wanted to lose 10 pounds. So I quit eating after 8 p.m.
and watched my waist shrink.
I wanted to find a good man. So I treated
strangers with respect and am now engaged to my best friend. It didn’t always
work. But generally, if I made the investment, I got the return.
But
incurable illness doesn’t operate that way. Dealing with it is not about
studying harder or developing a regimented routine. Nor is it about karma,
becoming a better person or learning to like leafy greens. Rather, it is about
hope, about believing that things will work out even if I don’t know how.
It’s hard. Not only am I adjusting to a chronic illness, but I’m also
accepting that I am vulnerable to countless things beyond my control — that
great haze that is the unknown.
With ulcerative colitis, the unknown is
exploding around me like cannon balls. I could end up in the hospital with liver
failure induced by my medicine. I could experience a vicious flare-up that
results in the complete removal of my colon. These are only two of many
possibilities, all of them frightening.
When I get scared, I focus on a
definition of fate provided to me by a professor in college. Describing an
ancient Greek perspective, he explained that fate could be imagined as a plot of
fenced land. The individual cannot control where the fence stakes are placed.
But every person determines for herself how she maneuvers within the enclosed
space. That I have ulcerative colitis is a fence post hammered into the ground
at a very unfortunate angle. How I live my life with the disease is my
decision.
And my decision is to be hopeful. There is evidence to support that
hope. For starters, those 26 pills, which represent the achievements of a host
of scientists and the sustained investments of pharmaceutical companies. With so
many resources invested in my disease, it is likely that medical advances will
generate improved therapies.
I feel hopeful, too, when I consider the
immense creativity of the natural environment. In a world with the imagination
to invent emeralds and giraffes, Spanish moss, hound dogs and icicles, it’s not
quite so hard to believe that my life will evolve nicely, with or without the
benefit of organizational tendencies.
Trusting in something outside myself is
difficult. But I can say that I am learning to believe that things will work out
well, just because they will. In one form or another, my life will continue, and
it will continue to include the man I am marrying, family, friends, helpful
strangers, gregarious toddlers. At least, it will for now. And that’s a
start.
Loren Berlin lives in North Carolina and works at Self-Help, a group
that aids low-income families.