I have always said our superpower is having the ability to share our experiences. The older i get i feel a sense of responsibility to the next generation growing up. Or not yet living with Muscular dystrophy.
As an adults with myofibrillar myopathy a rare form of muscular dystrophy I do believe we should help the younger generations and their parents when going through the difficult parts of growing up with a rare muscular disease, having someone they can turn to in a similar situation to look up to, relate to, and learn from.
It’s going to hard for any non-disabled parent to really understand or relate to what’s going on with their child’s body when it comes to living with Muscular dystrophy – and that’s okay, no child comes with an instruction manual and the same goes when you are disabled there is no extra section to a manual – we learn as we grow just slightly differently with different barriers than someone who’s non-disabled maybe.
The impact that an adult could have with Muscular dystrophy on younger people can be huge, just by sharing challenges similar to those already faced. Navigating your way through though life can be confusing at the best of times and as much as people say kids are very resilient and will always bounce back easily enough, that’s not always the case especially when you throw in being disabled into the mix.
It wasn’t until i was late in my 30’s that I had any real interaction with anyone other than my mum who also lives with MD, that was in the same or similar circumstances as my self, it would have been great to have an older friend with MD to wheel me through life’s unique challenges, as much as i had my mum it’s not quite the same.
I often wonder if i had that one friend would i have made different life choices or stuck to the path that lead me to where I am today, I guess we will never know. Being disabled can be a very scary and lonely place in a world that’s not always accommodating for the disabled community, with the fears of the future having a mentor to look up to that can show you it’s okay you can have a career, family – that you can achieve your hearts desires just sometimes slightly differently.
Just having that someone to turn to, a friend who is willing to listen, even if you are not the same age. Age differences could even strengthen the relationship as you can learn from each other, just having that open and frank conversation with someone who’s overcame similar challenges, they’ve dealt with the same ignorant people, physical barriers, battle bruises and educational hurdles that you have and lived to see another day, having a friend that will be your cheerleader and go to battle with you ‘your ride or die!’
It took me too long to overcome my fear and stubbornness to ask for help, as a result, i missed out on so much life experience and social activities. I felt like a burden and was cut off from true independence, I don’t want the younger generation lining with MD or anyone in the younger disabled community to fail what I wished someone would have informed me of.
Helping the younger generations find their purpose and overcome adversity within this already imperfect world, is one of many ways that we can give back to the MD community while building lasting friendships.
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