Tuesday, December 11, 2012
I am utterly devastated to learn that my sweet friend Alexander has passed away.
He had Periodic Paralysis, and we had many conversations via Facebook private message concerning our condition. He picked on me about my blog rants, and translated my blog and Yahoo article for his friends and family in Ukraine. I even gave him some input on his little girl's English homework one day, and I was honored to do so. Most of the time we would just check in and ask about how each other's week was going, health-wise. We understood each other perfectly, in spite of our slight language barrier.
Like most of us with Periodic Paralysis, he had been through the wringer where medical care was concerned, being mistreated over the years and not taken seriously. Even with a family history of close relatives dying prematurely, he had so much trouble finding a doctor who would listen and treat him properly. He told me that doctors kept telling him it was all in his head, because they had no knowledge of the condition.
Story of my life. I related to Alexander so well...his story and mine were almost parallel.
Many of us in the online support groups did our best to encourage him through the battle. I've been told that he died in the hospital after an episode that affected his breathing. It sounds similar to the episode I had in June, when I had to wait in the ER to be seen, and debate with the hospital staff for days to be treated correctly.
My heart is crushed for him and his family. Alexander was only 31 years old, married with two young children. I will never understand. Why him? He was a devoted husband and father who had so much to live for. He started a mission to educate people in his region about this disease, even finding others with Periodic Paralysis and trying to help them seek treatment in the midst of his own challenges.
I simply cannot wrap my brain around this loss. Why him? Why not me?
It makes no sense whatsoever. It is unfair. It makes me angry.
I will never understand. I will never stop asking why.