As you come to him, the living Stone--rejected by men but chosen by God and precious to him--you also, like living stones, are being built into a spiritual house to be a holy priesthood, offering spiritual sacrifices acceptable to God through Jesus Christ. 1 Peter 2: 4-5

Monday, March 15, 2010

Syringomyelia Sucks

I actually cringed when I typed that, because I don't like the use "ugly" words and that is one of a few words that, without being a curse word, just sounds so crude to me. I can't stand it when my children use it, can't stand to hear it on TV. And yet, when I needed a word to describe what this horrible disease has done to one of my very best friends, it seemed a bit appropriate.

Dana and I have been friends since Daryl and I got married in 2002. We were first thrown together for AWANA's, and then later when I took over Vacation Bible School, she was my right hand "man." She had boundless energy and a huge heart. I knew that I could always count on her, no matter what. I knew that I could tell her anything and not be judged or lectured to. I knew that whatever I told her, that it stayed between the two of us.

The most amazing thing about her, though, was her generosity. She and her husband didn't and still don't have much. Yet she would spend what she did have on others. She gave of her time willingly and generously. If anyone needed anything, Dana was there. And you knew she was there too. She was loud and boisterous and always happy.

And no, despite the fact that I have just written about her in the past tense, she isn't dead. but she isn't the same person she once was eight years ago, five years ago, even one year ago. Dana was diagnosed with syringomyelia with Chiari malformation fifteen years ago. And fifteen years ago she was told that within 5 years, she would be in a wheelchair. She beat the odds, and still walks, but deals with pain so severe that she wears a morphine patch and still has to take two other powerful prescription pain killers just to be able to function. She has always had an attitude of gratitude, thankful for each day that her feet hit the floor in the morning and she was able to walk.

In the last year, though, things have changed for my sweet friend. Unable to withstand the pain, she often stays in bed for days at a time. Because her disease affects her nervous system, and because of the extreme pain, she has developed such severe anxiety that she can not be around people for very long, even her own children. She has become a recluse in her own home, simultaneously crocheting and praying to get her through the days and nights.

I hadn't seen her, nor talked to her, in over three months...until Thursday. She had called me to let me know that she had made blankets for the kids--all five of them--and wanted to know if I could come by and pick them up. I jumped at the chance to go see her, and while I am so so so glad that I did, it left me with a sad, helpless feeling, hurting for her for the life that she has lost, sad for me, and wondering what life has in store for her. This disease has sucked the life out of her. It has stolen her joy. And yet, I know that according to Romans 8:28, all things work together for good for those who love Him. I know that God can take any situation, even those meant for evil, and use it for good. I know that God knows her pain, her heartbreak, her suffering, and that she is not alone. And I know without a doubt that she knows these things too.

I know that some day, and I hope that it is here in this world, I will see her smile again. That the Dana that I have always known will be the Dana I know again. That we will look back on this together and see how God used her, and this terrible disease, in a mighty way for His kingdom.

1 comment:

  1. Wow! What a powerful story from a wonderful friend and sister in Christ. I have syringomyelia, though not to the extreme your dear friend has, and it has impacted my life in a way that, well, does suck.

    But your words were very kind and uplifting. I just always believe that friends, true friends, are so very hard to find. Dana is blessed.

    Be well and blessed! Peace.

    JD Williams (I put this here because I do not blog on Blogger, but on Tumblr) Cheers!

    P.S. You have probably already found these but just in case:
    Three of the very best sites on SM/CM. (in my humble opinion)