I only just catch myself before I say something wrong. It’s such a close call sometimes, my heart races and my stomach flip flops for minutes afterwards. Here are two examples:
First, during a visit with my mom, we were listening to music when this beautiful song came on. It was so feminine, so pretty, that I could feel the the silk ribbons of my Pointe shoes lacing criss-cross round my ankle, the unforgiving cardboard and leather toe box slipping over the end of my foot. The choreography unrolled before me. Just at that moment, I almost said, “I would have loved dancing to that when I was alive.” Did you catch that? “When I was alive.”
Second, “I should have tried one of those in real life.” That’s what I almost said to Evan as he ate a vegetarian reuben sandwich. The words were on the tip of my now dead tongue. If I still spoke, the words would’ve reached him, and we would have had to talk about it.
Am I in Purgatory? Then what’s Evan doing here? Is Elon Musk right? Is this a simulation? All of this assumes I am so intuitive that I figured out my creator’s machinations. Or maybe I am in denial/ losing it.
Thoughts?
How I Live Now: Life With ALS 
You are in a very hard place. I am familiar with losing the ability to enjoy things you loved, and it’s excruciating. You are still so much alive though, bringing your courage and bravery to the world, to people like me. Don’t stop looking for things you can still enjoy; they’re still there, even when it’s hard to find them.
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You are in a very hard place. I am familiar with losing things you once loved, and it is excruciating. You are still very much alive though, bringing your courage and bravery to the world, to people like me. Don’t stop looking for things you can still enjoy; they’re still there, even when they’re hard to find.
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You are truly a gifted writer. I only wish the things you had to say were not so heart wrenching and that somehow you would wake up and find out this was all a nightmare. Your life may feel as though it has no purpose, but let me assure you it does. I have suffered with MS for years now and though it is no where as severe as ALS, it has the same outcome, it just takes a lot longer. I live with constant pain, can no longer drive and have been forced to give up nearly everything that I ever loved. Lost my husband, lost my job, lost my assets….I am nearly a shut in because it is often too painful to even change my clothes to go out. I would have no hope were it not for one thing. Years ago, Jesus picked me up from the trash heap of what once was a life with an abusive husband, set me on my feet and assured me that I would never lose the ability to walk because He would always have my hands in His. Like a child dancing with her feet on her daddy’s shoes and her hands tightly gripping his, I manage this life of mine and do feel as though I am dancing most of the time. Now, rather than fear death, I am anxious to finish my work and dance with Jesus in person.
I am not here to preach, rather to allow Jesus to extend His invitation to you through my hands. You see, God has impressed upon me that no matter how disabled I become my life will always have purpose because He will use me until I draw my last breath… to help others. I am constantly amazed at how He lifts me up, so amazed that I have had to write about every incident lately because I have heart problems now and I believe my time may be short. I cannot promise He will heal you, though miracles like that sometimes do happen, but He will fill you with the “peace that passes all understanding” if only you will ask. Jesus is here for you. And so am I. You will be in my prayers, Beloved.
Sincerely, Karen
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