I Hope You Never Know

Someone recently said something to me that’s been on my mind for a while now. I was told I wasn’t really disabled. It was an offhand comment, but this person implied that if I truly wanted to I could somehow stop having Multiple Sclerosis. Or maybe I’d still have it, but there would be no symptoms… I’m not sure. They weren’t particularly clear about how it would work, but they were pretty clear in that it was a choice I was making and therefore my fault.

Here is my response:

I hope you never know.

I hope you never know what it’s like to be in constant pain. Ever had a “charley horse?” Now imagine that never going away. Some days are better than others and on the very best days it’s merely annoying not debilitating, but it never goes away. And those good days are few and far between. I’m on enough painkillers to tranquilize an elephant* and still I’m in constant pain. I hope you never know what that is like.

(*I have no idea if this statement is true or not, but it feels true.)

I hope you never know what the term “MS Hug” means. It’s not a medical term but say it to any MS patient and they will know exactly what you are talking about. The Boa Constrictor that has wrapped itself around your torso. King Kong holding the heroine so tightly she can’t breathe. I hope you never know what it feels like to sit very still hoping like hell the muscle relaxers start working soon and fighting for each breath.

I hope you never know what it is to have your eyesight fail you (Optic Neuritis) or have problems hearing. I hope you never have to think about when places you need to go will be at their emptiest, because the more people there to bump into you means the more likely you are to fall in front of everyone. I hope you never have to plan ahead for “big” days like grocery shopping or laundry by not doing anything physical the day before and not being able to get out of bed the day after. I hope you never have to avoid places you love because there is nowhere to sit down if you need to. I hope you never have a day where taking a shower and putting clothes on is so exhausting you can’t do anything else. I hope you never know what a challenge it can be to type, write, put on earrings, put on clothes, brush your hair, etc. etc. and so on. I hope you never know the utter exhaustion you can feel, while still not being able to get any restful sleep. I hope you never know the terror that comes when you can’t control your own body. I hope you never know the hopelessness you feel when you can’t count on the one person who has never let you down before: yourself.

Don’t get me wrong some small, vindictive part of me wants you to know and experience in great detail exactly what I am going through, but that part of me isn’t who I try to be and I’m ashamed of myself when it comes out to play. Mostly though, I hope you live a long and healthy life and never know what it feels like to be “disabled.” I wouldn’t wish this on my worst enemy and, even though I’m feeling a lot of anger towards you right now, I don’t hate you, I pity you. I pity you because you have no sense of compassion or know what it is to be concerned about anyone other than yourself. People like you might have a full Rolodex, but they don’t have true friends in their lives who love them no matter what. And that is what makes you more “disabled” than I’ll ever be. I just hope you never know…

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