#42 My ALS Journey—Rude Betrayal

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Rudely, my body continues to betray me. Rudely, my body betrays me and fatigues me before I am ready. Last night, we were at my daughter’s, having dinner with some friends. Almost by magic, the clock turned six, and I felt my body turn to mush. My legs gain weight, my breathing is a little more labored, and my anxiety level begins to rise.

The fight within me continues. I don’t want to leave, so I hold on until about 7:15. I tap Cliff on the shoulder, and we sadly begin our goodbyes. I hate missing a good party.

This is the paradox: I hate leaving friends but can’t wait to get home, take off my leg braces and slip into my pajamas.

The betrayer attacks my feet and legs, causing me not to be able to walk. It attacks my breathing, causing me to use a breathing machine at night, and it attacks my psyche, wondering where the betrayer will surface next.

Last night, while using my breathing machine, which helps keep my diaphragm functioning, I woke with a start, a little panicky. I felt as though I couldn’t get enough air. In a couple of microseconds, I realized I was just a little congested by allergies, making breathing difficult. No problem, I shut down the machine, blew my nose, put back on the breathing head gear, started the machine, and went back to sleep but not without thinking what if that happens and I can’t move my hands or use my voice to ask for help, and I am left with the panic. This is when I am hoping for good drugs. I have never been a drinker or pill taker (other than my favorite Bayer Aspirin, which I believe cures everything); perhaps this will be the time to see what I have been missing.

I am always hesitant to write/post/blog about something that can be considered depressing. The point is not a “feel sorry for Susan” scenario. This is just life. We all have something that takes our breath away and leaves us with those moments of panic. I am no different than everybody else. Mine just happens to be a medical condition. Everybody wants a stress-free, perfect, peaceful life, that isn’t going to happen. I have found and continue to trust that there is only one place to find perfect peace.

“The thief comes only to steal and kill and destroy; I have come that they may have life, and have it to the full. I am the good shepherd..” John 10:10 & 11

Art Work is Original

–Susan

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