What it's like to live with a progressive neuromuscular disease

Friday, March 21, 2014

To my fellow HIBMers who know these feelings all too well…

That feeling you get when…

…you physically can’t move out of the way (as in, just side step) when someone’s trying to get by and he or she thinks you’re just being rude.
…there’s an earthquake and you realize you are completely helpless to escape in that moment (let alone to be able to run to your kids when they may need you most).
…someone who’s ahead of you (and maybe in a rush) is being kind by holding the door open for you and you feel terrible because they don’t realize how long they will have to wait until you hobble your way over to them.
…you meet someone for the first time, e.g. in your new book club and you don’t know how, when or even if you should or need to reveal this “secret” or plain simple fact about yourself and your disability.
…you meet someone new, whether it’s sitting in a parents’ meeting at school or swimming in the pool at the gym and eventually you know you’ll have to get up and out and display your disabled body and awkward gait for everyone to see and you are once again reminded that you will never have the luxury of just being you rather than you with the disability.
… you’re at the supermarket check-out  and you realize you forgot to get something, but the line behind you is so long that you just accept defeat and plan to get it the next time. 
Then there’s the feeling you get when…
…you hire a ski instructor (who’s not part of the adaptive ski program because they happen to be shut down for the few days that you’re there) and you tell him you feel bad that he has to constantly take his skis and gloves on and off and then bend down to attach and detach the special hardware on your skis every time you get on and off the lift and his response is, “Are you kidding me? This is nothing compared to what you have to deal with on a daily basis.”
…you’ve spent the last 7 years dreading the day when one of your sons would eventually have to help you physically in some way and it turns out it’s actually not a burden for him but rather something he does naturally and with such pride.
…your receive weekly deliveries of fresh pomegranates seeds from your father and step-mother which they’ve spent hours processing for you because they want to ensure you’re eating enough antioxidants.
…your mother and mother-in-law drop everything when you say your husband’s on an urgent care shift and you need help with the kids.
…your husband surprises you and takes it upon himself to have railings installed on the sides of the two steps in front of your house that have been giving you trouble for a while, because you couldn’t bring yourself to deal with it in any productive way.
…you discover a cute new pair of retro sneakers to add to your collection of lace-up shoes only and you get a boost.
…your preschool mom friends regularly check in with you at an indoor gym birthday party to see if they can help you out in any way.
…you travel through your life and realize that your highs are incredibly, unimaginably high and the lows are tragically, painfully low, and you conclude that you’d rather struggle to hold onto and  experience  all of it than settle for the alternative.

Please visit the NDF website for more information about HIBM and how you can help fund a cure

Neuromuscular Disease Foundation

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