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The year of Learning to Live

Posted May 30 2010 12:00am

My one year anniversary is coming up. The anniversary of what?
Deciding to Live!
I suffer from Reflex Sympathetic Dystrophy. RSD, aka CRPS. It is a painful, chronic, progressive neurological condition. There is no cure. The most common symptom is 24/7 pain..hot, burning nerve pain. No matter who many drugs they give you, the pain never stops. 

It means nights without sleep (in most cases for years), It means no longer being able to work; not being able to go out in public without the constant fear of being touched or even worse being bumped into by a passerby. Touch causes extreme pain.  Your skin is hyper-sensitive and even a gentle breeze can set off the worse burning fire on your skin. There is no escape from your own body; betraying you; causing you to lose friends, family and your own sense of self-worth.

One year ago, I decided I could not longer live like this; My hands had become disfigured, my legs no longer worked and I was confined to a wheelchair. It had moved into my jaw and my teeth starting snapping off at the gum. I didn't have the money to fix them because my savings had all been ate up on doctors appointments and medication. My mind had become a blur; because of the side effects from so many different types of medication, I would fall asleep even while trying to eat. I looked and felt like 100 yrs old, even though I was just in my 50's. I didn't even recognize my own reflection in the mirror. I had lost myself.............

As I was planning the "neatest", cleanest way of going out, I began wondering. What happens if I don't complete the job and end up a complete vegetable? What effect would this have on my family? What happens, if the day I leave this earth, a cure is discovered? Have I tried everything to change my situation? I was riddled with doubt; not fear; the fear was living as a disabled person.

I think healthy people never think about their "Quality of Life". Many think that life in any form is living...it isn't. Quality of life means being around people, laughing. loving, being "productive...all the things I wasn't. I was angry, bitter and resentful that others were just carrying on and I was being left on the sidelines.

On the day of my planned death, I had an "epiphany". I always wondered what that word meant and now I knew. It wasn't my life that was wrong, it was how I was dealing with it.  Feeling sorry for myself; constantly thinking about all the things I couldn't do instead of trying to figure out what I could do. Spending my days bitter and angry at the circimstances that led to my RSD instead of finding my own way to deal with this condition instead of letting the doctors convince me it was hopeless and in turn I was hopeless.

I gave myself a year of life; If, one year later, I did not figure out how to live with my disabilities, to come up with a reason to get up in the morning, then I would finish what I started. I started looking around at others; talking to people; joining every support group I could find; all in search of answers. I stopped all my medications (AMA: against medical advice). it took me 2 months to accomplish that. I began to feel stronger, more in control of my life and my emotions. I prayed....

I began my own physical therapy; the doctors (OT therapists) had stopped treating me because of the atrophy in my extremities. Again, they offered me NO HOPE. I began taking supplements of all kinds. Vitamins, and minerals that had been depleted from the years of heavy narcotics to fight the pain. I learned mirror box therapy; self hypnosis. Anything that I could do by myself to lessen the pain and stress that the pain caused.

Today, I am celebrating life...what hasn't been effected by RSD was my ability to talk. I use Dragon software to type for me. I re-started my radio show program to help others looking for answers. I spend every day on the telephone, talking to others who feel depressed, alone and hopeless. All the things one year I had been feeling myself.

Life still isn't perfect. After learning how to walk again, somedays I am still forced to use my wheelchair. But, I know it's only a temporaty setback. Not a permanent condition. There are somedays, when I watch out my window and other people running, going places and living their life to the fullest. But, I no longer get angry, resentful or jealous like I once did. My hands will never work the way they once did. But, I can live with that. My mind isclear, my depression is gone and I know every day when I get up I will someone new today; someone that needs my help and that's what keeps me going......

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