It has been awhile since I’ve written about anything in my recent life experiences. First off, if you are reading this thank you . It is just a culmination of my experiences in the world since I received my terminal diagnosis. I recently lost my arm and hand movements, I’ve earned the title quadriplegic.
I have been dreading this moment since my initial diagnosis. Told myself I would not want to live like that. Can you imagine, paralyzed and unable to talk, hell no I’m not going through that shit. This was the polarizing moment where I had to make a decision. And I didn’t make a decision, but I pointed mentally towards i will just let the disease take its course. As time went on I began getting my affairs in order and working a lot to keep my mind busy. I saw the movies Gleason and Augie, and I saw that it was not all doom and gloom, these guys are living. I said to myself I can do that, but then I learned that insurance doesn’t cover caregiving and I would be paying six figures a year to have the required care. Holy shit, just another huge burden. Today I am living with ALS. Yeah it’s fucking hard, I have some horrible experiences that pushed me to the edge. But here I am, and I am happy with my life.
1 Comment
Sue Bassett
2/23/2024 01:10:58 pm
Hi Shaun - I am the Treasurer for ALS United Orange County and I remember you and your son from a golf tournament many years ago. I hope you are having a good day today. I enjoy reading your blog. Take care.
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Shaun KalpakoffArchives
May 2023
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