It’s hard to believe it’s already been two months since I found myself unexpectedly and unexplainably paralyzed. This is the kind of life change that one could never prepare for or even fathom walking through until it happens.
Last night I was laying in bed and thinking about being paralyzed. It might sound funny, but as hard as it was to be paralyzed and wheelchair bound when I was up and wanting to active, the hardest time to be paralyzed was when I was in bed. You don’t realize how much you move in your sleep to stay comfortable until you can’t move. Every time I wanted to roll over in bed I had to sit up (which was quite the feat by itself using the grab bars on the side of the hospital bed), shift my hips to the position I wanted to be in, and drag my dead leg into that position, then carefully lay back down again. And *then* I had to try to fall asleep again with my heart pounding from all the movement.
I am so thankful to be able to move freely in my sleep again. SO thankful. I already feel so disconnected from those days of being fully paralyzed that it was really good for me to remember last night how far I’ve come.
I want to talk about the power of hope and faith. When I was diagnosed with Guillain Barré, I had the understanding that I would eventually fully recover. The vast majority of those with GBS do recover fully, though it often takes a very long time. When I was in the hospital, I fully believed that I would fully recover, and based on the rate of my recovery those first 2 weeks I was confident that it wouldn’t take too long.
Now that my diagnosis was corrected to Transverse Myelitis, I know that I actually had a 33% chance of never walking again. And I’m thankful that I didn’t know that when I was originally paralyzed. I don’t know how that would’ve affected my resolve or my hope for the future. Staying paralyzed was never an option for me. The wheelchair was a rental and I purposefully didn’t make any permanent changes (like handicap accessible things) to my house.
After 2 months of fighting for my strength and health, I know that I have beaten that 33%, but I still have a 50%+ chance of permanent spinal cord damage. And there are days that that knowledge is terrifying and overwhelming. I still have no feeling of pain or temperature in my skin from my chest down, and a strangely-heightened sensitivity to textures, which affect my daily life in real ways. I still struggle constantly with my bladder and bowel function. And I have constant burning nerve pain in my legs. The thought of being trapped in this very broken body for the rest of my life is scary.
But hope and expectation are powerful things. Last week I connected with a woman who is close to my age who had an attack of TM over a decade ago. She has permanent spinal cord damage that affects her in some real (and constant) ways, but she hasn’t let that stop her from fully living. She is going places and having experiences that are bucket-list type things for me. And seeing that reignited my hope. That I don’t have to fear being permanently disabled. It’s possible that I might be, and it’s possible that I won’t be. But either way I can live my life to its fullest potential and be happy.
A couple days ago I learned that the young daughter of a friend of ours prays for me every day and wanted to know how she could pray for me better. I about cried. I am still so touched by all the people who have been faithful to pray for me and are still praying 2 months later. I still desperately need your prayers. I haven’t given up, but some days it’s really hard not to. Some days I feel like I’m swinging on a pendulum between despair and determination.
But I know that my God is so good, and that no matter what, His goodness will be in effect in my life. I really hope that His goodness will be made manifest through a complete healing, but I also pray that no matter what, I will be found faithful.