Uncertainty Can Be Scarier Than Death
This is something I never understood until I began to understand neurological disease the fact that death is not the only way to lose who you are, your essence, your character. The fact that there are in fact scarier things than dying.
I had 2 days recently of rapidly deteriorating neurological condition followed by 2 days of sudden rebound on steroids to mostly okay. Neuro Behcet disease a condition that my neurologist previously dismissed is now being seriously entertained.
For me very Severe ME has always been the scariest possibility. As an autistic, I already struggle with communication, sensory overload, and difficulty adjusting to new careers all of which would be 10x worse if my MECFS progressed from severe to very severe. But at least I had discussed this outcome with my family. We have plans etc.
Suddenly I find myself looking at a world of half a dozen highly aggressive treatment options including biologics, high dose steroids, chemotherapy and more. I have no idea how these things would interact with myalgic encephalomyelitis and no idea how I will even access treatments as a fully bedbound patient.
Mostly though, losing so much speech and movement so quickly and without "snapping out" of it as I do with my seizure-type episodes just scared the hell out of me. The realization that at any minute this condition could flare and take out who knows what part of my brain is far scarier than just the idea that I might slowly deteriorate.
Why do I bring up death? I guess cause as everything kept getting worse those first two days I found myself almost finding comfort in the idea I might die. That my brain slowing down would just keep on going till it stopped. When it stopped slowing down and just stuck, that is when I got really terrified.
For those of us with chronic illness especially those with severe loss of quality of life the idea of losing that much quality of life again can be scarier than the idea of death. That's okay. I think it's only rational. After all, we understand that death is not the only way to lose a soul.
