I hate that I’m writing mostly about health right now.
Although, existing as a soul trapped in a very human body shouldn’t be something I feel shame about. We should celebrate those who document it for those who might want to read such in the future. We all have a body, and we all feel things within one.
This includes someone with shut-in syndrome, who we’d discard as less human. Someone with a lifelong disease, thereby which we assume they somehow “feel less pain” from a needle than we do. Someone who outwardly “looks different than us” – for example, CP, SMA or spina bifida - and so our stigma against all that are not supermodel perfect somehow says, “Well, their hands are used to being at that angle”; Treated as if PAIN isn’t pain in every single body.
If your body began to be altered by something like ALS: it would be no less YOUR body than the body you stood upright in with falsified confidence at prom as a teenager… or swung your arms in freedom with at an outdoor concert…. or stood in line waiting for groceries without counting down the seconds until you’re done.
Not everyone has experienced this body privilege in their personal timeline of course: But ANYONE with the ability to do so without thinking twice doesn’t know how good that can be, and many still keep an accidental bias towards the pain they feel in an ”otherwise healthy” body somehow feeling different than those constantly in it due to a genetically sh*tty lottery.
A few of the things that hurt me most when I can’t move “for myself” IS moving as ‘myself’. Cleaning up the house in the way that I want, with my own neurotic hands. Driving my car without holding pained breath for much of the time. I’m rebuilding even if those that screamed “too thin!” will likely scream some other useless thing on the flip. They don’t matter.
But being a soul trapped in a very human body wishing you could play out like a Death Cab song shouldn’t be something I feel shame about…
We should celebrate those who document it for those who might want to read such in the future.
▪️Part Two
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I can so relate to this. I have to think about every step I take and rest after every chore - it’s exhausting. I feel shame and MS is just part of the genetic lottery. Why do we feel shame when there was nothing that we did to cause our health issues?
I’m glad your write about it…. You write much truth. I rarely go to the emergency room for my version of normal just my abnormal…. And I remember one day hearing a young adults (mid 20’s maybe) SCREAMING In pain with a dislocated shoulder and I thought, “oh that’s how normal people react!” I can’t do that! I don’t have the energy and I don’t have the brain power to respond like that to severe pain. I have other things I WANT to do. That isn’t belittling others in any way, and I haven’t miraculously “overcome” my pain…I just don’t have that luxury and I feel guilty when I even shed some tears at all! I appreciate you writing because I’m less alone. It doesn’t stop the pain for either of us, it doesn’t make us somehow better than or anything else…. But we’re less alone knowing we’re not the only ones struggling and desiring a better life than what we were dealt. Thanks for your vulnerability. (And I think others want to think we’re “better” than we are because otherwise they have to start to face their own fears of illness, suffering and mortality…) xo