A Walk With Someone New
Yesterday, a friend invited me on a walk, because she is raising money by walking for a charity. We decided to walk on my street, which is a flat cul-de-sac about a half-mile long, so no traffic, and perfect for walking.
I have known this friend practically my whole life, as her family and my family are prominent in the local community. However, we never talked much for one reason or another.
That changed recently for whatever reason. And yesterday was the first time she has pushed me, as I use a manual chair.
The road is well paved, but there are several cracks in the road. Nothing you would feel driving in your car, but rolling over them in a manual wheelchair does provide somewhat of a jolt.
Others perceptions of people with neuromuscular diseases
What I found funny is that every time she rolled over one of these cracks, she would ask if I was hurt. The first time I understand, because it was somewhat jarring, but not enough to be worried about. It was just a bump in the road basically.
I always find this perception that people with neuromuscular diseases (NMDs) need to be handled with kid gloves interesting. I admit we often have to take additional precautions or be worried a little bit more than the average person about certain situations. But many of us lead somewhat active lives outside of a hospital-type environment.
Are we stronger mentally?
Going hand in hand with this perceived physical weakness, I often encounter the perception that people with NMDs are stronger mentally. Not necessarily smarter than the average bear, but able to withstand the difficulties and indignities easier than someone else.
This one always perplexes me, because I always have days where I am tired of living with it. I admit I do not share the frustrations I feel with many people.
Physically fragile, but mentally tough
I do not share mainly out of some sense of trying to have control over my life when so much is taken away. But the feelings persist. I am human after all.
It is this dichotomy (physically fragile, but mentally tough) that in my opinion causes reluctance for people to reach out to us with NMDs. Their opinion is that we are too fragile to have anything resembling a life.
Reassuring others that I am just like they are
And at the same time, we are often placed on a pedestal (I wonder if it has a ramp up to it?) because of what we have “overcome.” Because of this, I often have to reassure people new to interacting with me that I am just as human as they are.
I have my own frustrations and fears with my life, but it is still a life filled with happiness and joy.
A glimpse into my life
While I do not precisely phrase it that way when dealing with new people, I do try to calm their fears, which hopefully relaxes them (as I did yesterday). Over time, I show them through my actions that I lead a so-called life.
How do you interact with people thrust into dealing with you? What tricks do you use?
Have you, or someone you know been diagnosed with SMA?