A Conversation about Multiple System Atrophy


“I can’t do this anymore!”

“Do what?” the mind asked.

“This bouncing back and forth. Keeping my faith. Thinking everything is going to be alright. It’s just too much!”

” I understand what you are saying. I play this game every day, sometimes several times per day. It just gets old. I look down at my body. I see the crepe skin, the bags under my eyes. I see the smile try to widen and the reflection of tears welling in my eyes. I see my swollen legs and feet. I feel the sick feeling in my gut.”

The two sit in silence digesting each other’s words. Shame and guilt over the battle of the thoughts. Realizing there is not a damn thing that can be done. No cures have been found and it doesn’t seem enough people really are aware of the  need.

Thinking back to the days of bright sunshine. “Remember when we used to walk down to the playground and sit in one of the black, leather seats hooked up to a metal  chain? We pushed with our legs. “Remember when we had stronger legs?” Silence.

We felt the breeze brushing our hair and the feeling of freedom and joy. Wow, those were awesome times! “What happened? I don’t get it! It wasn’t supposed to end up like this, for heaven’s sake!”

“Today, our legs swing, but not the way we like. They swing when someone tries to sit me  up on the edge of the bed. They swing and feel like a wet rag when they believe I need to get up and take a real bath.”

“Why don’t people just leave us alone? Can’t they see we are humiliated by them having to witness what our bodies can’t do any longer? Damn it! Just leave us alone. We just want to be left alone and die with some dignity!”

“They love us dummy. That’s why they do the things they do. They don’t understand how we feel just by looking at our faces. They have to read our eyes! How can they feel our pain when we can no longer say a word?” Silence

Letting out a deep sigh, the other follows the lead. “This sucks, you know. We are no longer someone they can count on. They are being forced to ponder on what their life will be like once we are buried and out of sight.

“Yeah, you are right. We ought to feel more compassion for them. We promised them the world and forever, and we are now giving them a view of less time.”

“I agree. Let’s give them a break. Let’s try real hard not to show the pain we are in. Let’s try to show appreciation in any way we can, that they are still sticking beside us, taking care of us. I wonder why they do that? They could just take off and find another life.”

“Dummy, they stick around and do what they do for one reason.”

“What’s that?”

“They love us.”

Written by,

Terry Shepherd

06/26/2018

 

savors 4

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