Bodily Wisdom: A Journey Through Illness into Wholeness

Diane Shrank

Chapter 1

Here and Now

There is a wand in my mouth. Leaning a little forward, I tap out letters, one by one, on my special metal keyboard, and the letters, then words, appear on the computer screen in front of me. Periodically, I have to straighten my head back up so as to rest the muscles in my neck and shoulders.

It is a warm spring evening here on Cape Cod. I am at home, sitting in my book-lined study
in front of my computer. Staring out the window to my right, I notice that the forsythia are just
beginning to bloom. Writing is good for me. I enjoy the process, it is always therapeutic, and, as an almost daily ritual, it gives a sense of meaning to my day - sometimes even to my life.

I need that.

Today has been a good day. All the PCAs (personal care attendants) showed up, and the care went well. In other words, I was washed, dressed, exercised, and fed and still had time for a day
besides.

My good friend Mary came by for lunch with one of her delicious, always heavily-garlicked concoctions. Mary is a talented, articulate woman in her fifties who has committed her life to
peaceful social activism and all-around rabble-rousing in order to make the world a better place.
We had a great conversation about corporate accountability. We agree that, since corporations
have to be registered with the state, they have an ethical as well as legal obligation to be answerable to the public. In concurrently laying-off tens of thousands of people and giving their
CEO's enormous bonuses, they seem to have lost their connection with the human face of the
people who make their success possible. Mary always nourishes my head and my heart, not to
mention my stomach.

Mary also always speed-feeds me. By that I mean, sometimes I have to shake my head when she brings the next forkful up to my mouth while I am still chewing the last one. I guess that's
because she's always going at about 90 mph herself. I don't mind; her friendship is more than
worth it. And anyway, I am used to this sort of unintentional carelessness on the part of almost
everyone who feeds me. Others get distracted and forget to feed me for long periods of time, while I sit there and stare at the plateful of food in front of me. This typically happens on days when I am famished.

I digress; excuse me.

The phone is ringing. I tip my head back, hit the button on the headrest of my wheelchair and
answer it by speaking into the speakerphone on my desk. It's my mother.

"Hi, darling," she says, in her rich, sonorous voice. "Is this a bad time?"

"Hi, Ma. No, it's a fine time. I'm just writing. How are you?"

"I'm fine. Daddy just called; he'll be home soon. I won't keep you. We looked at our calendar - how's the weekend of the 20th for us to come up?"

"Hm... Doesn't ring any bells - I think it's good. Can I get back to you on that?"
"Sure. How's Annie?"

"Annie's fine, thanks." I smile inwardly. Thinking about Annie, someone whom I can honestly refer to as my "significant other," warms my heart. Even with all of our difficulties, I do so love that woman. "She'll be here tomorrow night."

"Good. Okay, darling, I'll let you get back to work. We'll talk this weekend. Love you."

"I love you too, Mom."

Multiple sclerosis, or MS, is a disease of the central nervous system (CNS), i.e., the brain and
spinal cord. According to prevailing medical theories, which I have no reason to doubt, it occurs
because the host's immune system mistakenly attacks the myelin sheath (a kind of fatty protein
insulation) of the nerves throughout the CNS, which activity damages the myelin and thereby
impedes nerve transmission. Because there are billions of nerve cells in the human body, there are innumerable variations on the manifestations of MS. There is also a sizable list of the most
common symptoms, like fatigue, loss of motor control and function, but I won't elaborate on that
list because it depresses me. In other words, every case is unique.

Approximately 300,000 people in the United States have MS, two-thirds of whom are women (no one knows why). Also, two-thirds of them have the relapsing-remitting type of the disease, in which they have attacks or "exacerbations," get better to a greater or lesser extent, then at some point later have another exacerbation, and so on. Again, everyone's different. The other third, in which I count myself, have the chronic-progressive type. That means that in my case, I have experienced a slow, steady progression of symptoms since the disease first began.

Enough of the technical stuff. This is not a story about me and my multiple sclerosis. This is
an accounting of the journey I have been on, the places I have gone, both external and internal,
since 1978, when I was first diagnosed with MS. MS led me to this road. The vehicle for this
journey has been my physical body. The driver has been a combination of me and something far
greater than me.

All I am is consciousness, really.

Everything else about me has changed over the years: my body, my thoughts and ways of thinking, my emotions and how I feel and express them, my desires and tastes, where I live, how I live, my dreams, my priorities, my beliefs. My body.

The only common thread that runs throughout this complex and ever-changing quilt I call my life is my consciousness. It is a kind of omnipresent witness to myself and the world around me. After all that has happened to me, the story of which I wish to share with you, I have come to believe that that witness is the essence of who I am.

I am holding out my hand (metaphorically, since I can't do it literally), inviting you to join
me.