Previous Challenge Entry (Level 4 – Masters)
Topic: IT'S CHILD'S PLAY (06/06/19)
- TITLE: If Only
By Shann Hall-LochmannVanBennekom
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Reading seems like an easy task too. But it isn’t. My arms ache, and the book feels like it weighs twenty pounds. Even if I manage to heft it up, I find myself reading the same words over and over. Even though it’s a kids’ book, the words don’t make sense.
My stomach rumbles. I realize it’s been days since I’ve eaten. Nothing sounds good. Well, I guess that’s not really true. Nothing sounds good that would be easy to make. Even the thought of making my favorite protein shake is too much. All I have to do is pour milk into the shaker, open the mix, dump it in, and shake. The shaking part should be easy since every muscle in my body is quivering uncontrollably. Ataxia drains me of what little energy I have. Plus drinking just means I’ll have to make that long trek to the bathroom more often. So right now, I decide to stay where I am. Even though my bladder and stomach are complaining. Loudly.
The hardest part is feeling like a burden to my family. Everything needs to be adjusted for me. Often, someone says, “The more you get up and out, the easier it becomes.” Oh how I wish that were true. It isn’t. Even a short outing is strenuous and smacks me into my bed with a vengeance. After a family dinner, I pay dearly for that precious time. My crash leaves me flat on my back, exhausted, yet unable to sleep.
Just taking a shower to prepare for an outing feels like an event in itself. I wonder, Why bother? Within an hour of drying off, I’m saturated in sweat. My kids say they understand, but I know they’re just being nice. They think anxiety causes my symptoms. If only they knew.
Oh God, I don’t think I can hold on anymore. I know you never promised life would be easy, but this…this is too much. If only they understood, it might be easier. Why if one more person tells me if I had more faith in God, I’d be healed, I might just go ballistic. Except that would take too much of my precious energy. I feel isolated, unwanted. Why can’t they understand it’s not as simple as they think?
Suddenly, my stomach feels queasy. If I’m not careful, I’ll be hanging over the toilet, puke mixed with toilet water splashing on my face. How can anyone think I’d choose this life? If only they knew.
The gnawing in my stomach stops as an epiphany knocks me in the head. I would stumble backward if I could stand up. I bow my head. Close my eyes. I'm so sorry, God. Forgive me. I get it. The only way anyone could understand would be to feel the actual pain, fatigue, and crashes for themselves. I'd never wish that upon anyone. Especially not on my family. Please God, don't ever let them understand how hard these ordinary events are. Shield them from this horrific disease. I thought if they just understood, it wouldn't be so hard. I was wrong. Selfish even. Forgive me. Please. And I need to remember, even though I feel alone, I'm not. My family loves me. And you, God, you love me even more. I'm never alone, and I know you understand my pain even better than I do. Thank you for carrying me through those days when I can’t carry myself. Thank you for reminding me to take it a day at a time. What’s that? Oh, yeah, you’re right. Sometimes I have to muddle through a second at a time. I'm changing my prayer to one of thanksgiving. I’m so grateful they don’t get it, and I pray they never do. Amen.
I still hurt, and I still have to pee. But somehow, the bathroom trek doesn’t seem that bad. Funny, how bitterness can weigh one down. Oh I know I’ll still suffer. When my body screams, “Stop!” I need to listen. No matter what. I’m sure my brain fog will continue. Stopping to think mid-sentence, drives my husband absolutely
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