by Lauren Fritz
This has been on my mind for some time, years. I’ve often heard other Duchenne families talk of the hurt and loneliness they feel in their own extended families. How family members ignore or don’t include the family with Duchenne.
I’ve thought a lot about this, as a therapist…as a mom of two young men with Duchenne. I hope what I share might help someone understand better.
We deal with a tremendous sense of daily loss, not fitting in to a society that considers ableism the norm, and a profound sense of disconnection – for my sons as their bodies betray them by watching and living the disease progression.
We have full days. They may not be full of sports practices, or proms or parties or celebrations over drivers licenses and girlfriends (although some of these things may happen for some of us). Our days are full of trying to make it work. Hours spent dealing with eating, dressing, toileting, transferring, fatigue, adaptive equipment, a myriad of doctors appointments and specialists, medications, school, purpose beyond school, pain control, insurance companies, waivers – then somewhere in there, trying to be connected to others.
I think it is hard for people in general, and extended family specifically, to relate. How could they when they don’t walk in these shoes? I see the awkward pause in people who do not know how to relate. What if instead of ignoring that feeling, they said
- I don’t know what your life is like. Could you tell me more about what it is like for you?
- How does it feel to have Duchenne?
- What is it like to experience a society that doesn’t understand?
- How could I spend time with you in a way that would be comfortable for you?
- What is the best way to deal with things that I can do that maybe you can’t, when I would still like to be close with you?
- Could I spend some time learning how to help care for you?
- I am curious about _. Could you tell me more about your experience?
Most often, we see an awkward ignoring, a shoving down of the opportunity to connect when there is not knowing what to do, when there is discomfort. We see people never talk about our reality. We see selective inclusion – sometimes people just gathering without us, or avoiding dealing with us. That is painful for any human being. That is painful for us. I know there are many fellow Duchenne families that share this feeling.
I notice the tremendous burden to figure out how to connect seems to fall to us. That means we don’t share much of our realities. That means we invite, because there are not often invitations. It means sometimes we isolate from what is raw and painful, coming at us daily. It means living with a two-fold sadness. First for the way this disease takes, mercilessly, and second, for the distance and loneliness that society tells us we are responsible to bridge.
Speaking as an able-bodied caregiver who remembers my life in the decades before Duchenne, I wish I had possessed the courage to connect with those who went through life differently than me. I wish I could infuse that courage in my family, in the young people around my sons. We don’t have to look the same to connect.
And when we give ourselves the space and time (and brave the awkwardness) to connect with someone who goes through life with different challenges than we have, the richness of that bond, when we realize the beauty of what we really do share at our cores, is immense. It is so rich.
I have learned these skills. They are learn-able. What if you were one of the few brave enough to chance connection? Not superficial contact. Real connection. What I have learned is that I seek this connection as much as any person with Duchenne. We are all just humans with souls that want company. And when we truly see each other, all of our hearts are deeply touched.
