Am I just the sum of my diagnosis?

So many of my fellow chiarians are witty, interesting and forward looking people. For all my tough talk, I find it hard to not remain a sum of my symptoms and I wish for something positive and unique to say.

I am back to working almost full time, with the exception of time off for continuing doctor appointments for both me and DH. For folks who don't know, DH is billybobswildride. My work day is stressful only because we are understaffed and hence overworked. The work itself is not stressful. While I'm there I can pretend my life is relatively normal. I can even forget I am a zipperhead for a few minutes here and there. That is, until my left hand decides to have a mind of it's own or the scar itches to high heaven.

DH says I am brave and should not beat up on myself for continuing to have fatigue, clumsiness or memory issues. As a survivor of child abuse, positive self image has been a life long struggle. When usual "human" shortcomings are hard to enough overcome, the issues brought on by chronic pain and illness are a whole new ball of wax.

DH found a great new support site for chronic illness "But you don't look sick". One included story relates an exchange between the author, Christine Miserandino, and a friend. The author struggles to explain, in a way her friend will understand, what it is like to live with chronic illness (in her instance, Lupus). It is called the "spoon theory". It is the most articulate explanation of what living life with chronic pain is like I have ever read.

WHAT IS WRONG WITH WANTING NORMAL?

When I was a teenager most of my friends were artists types and people who really didn't care what the world though of us. I never wanted to be normal. I thought it would be dull and meaningless. I wanted to be unusual, unique and misunderstood. (What can I say, I'm a product of the 80's) This was long before words like physiatrist, platabasia, Chiari, high-tone, retroflexed, odontoid, or any type of syndrome would part of my usual vocabulary. I no longer want to be unusual, unique or have something most doctors never heard of, let alone understand or know who to treat.

It was not until my diagnosis that I found out not everyone had one arm that was always colder than the other, it was unusual to have tunnel vision in the very cold weather and it was not funny, normal or entertaining to trip over one's own feet.

Before the surgery I told Dr. O that success for me would be no more new symptoms and relief of the headache that had come to stay. In the three months prior it seemed like there was a new tingle, numbness or pain every week. When I described success, I thought I knew what I was saying. Now I am not so sure. After all the difficulty of the surgery and the seemingly endless recovery I want more. I want to be normal.

Like so many people with life changing diagnosis, I wait, read web postings looking for support and pray.