Thursday, November 13, 2008

Entry #2: God Raised Her Up!

He Lifted Me
Jean Kinsey

They say you have to learn to crawl before you can walk. I know how to crawl because I've done that.

It was 1983. MRI's weren't used. Syringomyelia wasn't heard of, except for the very few patients diagnosed, and even fewer physicians that knew how to diagnose it. My response was one of dismay when the neurosurgeon said, "Jean, you have syringomyelia."

"Okay, can you fix it? What causes it? What's the worst case scenario?" I asked.

He didn't soften his punches. "You need surgery. You need it now. You may lose two or four limbs. We have to puncture the spinal cord and also remove a portion of the hindbrain. Worst case scenario--you may die."

I spent many hours on my knees talking to my God. I had seven-and nine-year-old daughters that needed a mother. I'll skip the horrendous details of the many lumbar myleograms, sticking needles into my spine, and eventually, the surgery because that is all back-story.

My real story begins here.

I lived.

I didn't become totally quadriplegic, but I did lose partial use of all four limbs.

Up until then, I had thought of myself as a good Christian person, who went to church--when it was convenient, who loved my church family-- when I thought about them, who taught my children to say their nightly prayers --when they weren't too busy or too sleepy, or skipping them until the next night --or the next. My real family, friends, and life were in the secular world--where I envisioned them.

I never expected my pastor, who had undergone back surgery and couldn't sit upright, to roll himself into the back seat while his wife drove him to see me every day for the many weeks I was hospitalized. I never expected my church to make a special seat so I could sit because I no longer had my top seven vertebrae.

I didn't think most of my friends would go on about their lives and forget about me because I could no longer bowl on three leagues, shop for hours or sit and play Bunco with them. I never thought I could appreciate the few true friends, who stuck around through it all, like I do. I have learned to choose my friends wisely. If they can't accept me because I don't have a certain financial status, or if I can't participate in every activity, then they are the ones to be pitied, not me.

Most of all, I never expected my husband to love me so much that he would offer to have surgery so I wouldn't feel penitent if I could never be a wife again . I learned something about myself. I learned that I could never be that selfish.

I learned to praise God for all the good things I still possessed instead of grieving the ones I'd lost. I realized the miracle of having the love of three children and a husband who doted on me.
I learned what it meant that I still had my life.

Perhaps I would have never stopped to evaluate my friends, my family and my Christianity, if I had not been stricken with SM. I feel blessed that God has taken a misfortune and turned it into a blessing, making me a much wiser person and generating in me a more profound tolerance for life.

I have learned to give back to society by volunteering in a support group for ASAP (American Syringomyelia Alliance Project). I talk to people all over the US and other countries, some much more incapacitated than I, who have been told by doctors that their pain is imaginary. They call me because they suffer from this debilitating orphan disease and have never heard the voice of another person who also has SM.

I tell them it really isn't the end of their lives. The medical profession, due to research funded largely by ASAP, is finally accepting the fact that we do experience pain; we are not crazy. I encourage them to look for the good things that surround them instead of mourning what is not. God is still in control.

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