Tonight, after reading and listening to a podcast for a few hours, I felt stir-crazy from sitting for so long. I needed to get up. Specifically, I felt like trying out the Movements I saw on the Netflix series “The OA”. I was just about to do that when I remembered I could not get up.
This is not the first time I have forgotten my limits. Sometimes when I wake up, I plan on walking to the closet to pick out my clothing. It takes a few seconds of trying to swing my legs the edge of the hospital bed (how I miss the ankle-aching cold of morning floorboards beneath my bare feet!) to remember I can’t walk that far.
Perhaps I forget because I can walk in my dreams. Every time. However, even in my dreams, I am aware that walking is unusual for me. Usually, I dream that I am walking and then suddenly remember that, like Cinderella and her pumpkin and rag dress, my legs will return to being essentially useless by midnight. Sometimes, I even feel them weaken and my knees buckle. Even in my dreams, I cannot escape my disease.
Shrugging off the crushing weight of realizing my disability anew, I force myself to forget that I am stuck sitting and will continue sitting for the rest of my life, or until a cure is found. I look at Evan and my pets and try to let the feeling of being loved overwhelm the feeling of being trapped.
How I Live Now: Life With ALS 
Even with the realization that your legs have failed you, I love that you share, that it’s LOVE that comforts you!!!
My husband is living with ALS as well, and I pray every night that even with the twitching and achyness…he feels the great love that I have for him.
Thank you making me feel like it not a silly thought!! I am so grateful that you are sharing your journey.
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First, thank you for reaching out. ALS can isolate us if we let it. Second, never ever feel silly for hoping and believing in the power of your love. The fact that your husband can count on you to be with him in his suffering makes a difference in a way you might never fully understand. I am able to keep fighting because I do not have to fight alone, and I am certain your husband feels the same.
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Praying a cure is near breakthrough. Thank you so much for taking time to share a piece of you, here. You are an inspirational young lady. I always find some form of positivity and love in every entry. Never lose that. Or your sense of humor ive noticed after binge reading past posts. Sending you lots of love….. until next time xoxoxox hang in there.
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Thank you for the hope you share through your losses. I am 47 years old and was diagnosed in Dec 2016. I am so fearful of the loss of movement. Right now, only my speech/swallow is affected.
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Hi Kelly, thanks for reaching out. I am so sorry that you are suffering. I hope we will see some great new treatments as more drug trials are underway so you can keep mobility, but know that no matter what happens, you will be astounded by your strength and resilience. Keep in touch!
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