My brain thinks my body can move. It remembers hugging, drying my hair, and standing on a rock in Lake Tahoe. In a heartless way, it remembers scratching an itch. I recall doing life activities myself, like showering or eating, while someone else does it for me. Weird, right?
I wonder if my brain remembers because I’ll regain movement one day. I daydream about learning to walk again. I put forth extraordinary effort in physical therapy sessions that are simultaneously exhausting and exhilarating.
This dream delivers hope.
Hope springs from a stem cell treatment that is crawling through the FDA pipeline. Social media posts depict people with ALS lifting weights and running again after receiving the treatment. Other participants report their disease progression has significantly slowed or stopped. Thousands of other people with ALS will die waiting for FDA Approval. A life saving treatment exists but you can’t access it — that’s more heartless than an itch you can’t scratch.
Hope isn’t a strategy, but a fuel to keep living.
I’m Forgiven and Free, fueled by hope.
March 27, 2019 at 8:43 pm
Shelly,
The title of this blog brings back memories. I remember telling Kathryn that her brain no longer knows her bodies limitations.
You keep fighting the fight and raising awareness.
Joe
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March 27, 2019 at 9:17 pm
Thanks Joe! I loved Kathyn! I remember her beautiful smile ❤
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March 27, 2019 at 11:01 pm
You are so amazing, Shelly, and such an inspiration to others. I continue to pray for you.
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March 27, 2019 at 11:31 pm
Keep dreaming Shelly! Love and Hugs!
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March 28, 2019 at 3:35 am
Shelly,
My mouth dropped open reading your essay. I didn’t know there was a drug that was crawling through the FDA pipeline. I didn’t know that there were social media posts of people with ALS running and lifting weights. I want you to again be able to hug others, dry your hair, stand on a rock and so much more! Praying that you get this drug.
Peace,
Eileen
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April 6, 2019 at 1:02 pm
What a beautiful photo. You are in our thoughts and prayers and have been so for a very long time. We are praying the treatment in the pipeline can speed its way through!
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August 11, 2019 at 2:15 pm
I hope you are in a better condition. I ll pray for you!
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September 10, 2019 at 5:50 pm
Thank you for following me. I felt sad reading your blog. My late brother-in-law was quadriplegic following a tragic accident. He, obviously like you, according to the comments, was an inspiration to others. He wrote a collumn for the Guardian newspaper and tried to find a positive in everything. He was hopeful of stem cell treatments being tested and developed, but sadly it was too late for him. You, on the other hand, are much younger and I feel sure it will come, maybe sooner than you think in this technological age. Stay hopeful and keep up the good fight. My very best wishes to you.
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September 30, 2019 at 12:28 pm
Very well-written. I am in prayer for you. I hope the science can advance without uneducated people functioning as an impasse. God bless you 🙂
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