31 Days of SMA: Mental Health and SMA

31 Days of SMA: Mental Health and SMA

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Day 25 of 31 Days of SMA⁣⁣⁣ Topic: Mental Health⁣⁣⁣ ⁣⁣⁣ This is Doug’s Story⁣⁣⁣ ⁣⁣⁣ During an adult workshop at this year’s CureSMA Conference, a question was raised about mental health. This wasn’t surprising. While the physical challenges of living with SMA are certainly tough, I have often found the mental challenges to be even more difficult. This shocks people who see me struggling to get up from a chair or know of the many injuries I’ve had from falls. However, what is not as obvious are the awkward stares I’ve dealt with over the years or having a pretty girl tell me I’m a great guy, but that she could never date a person with a disability. An ice pack or taking a few aspirin doesn’t help with that pain. I also readily admit that my mental challenges pale in comparison to the life and death situations that many caregivers of children with more serious cases of SMA deal with routinely.⁣⁣⁣ ⁣⁣⁣ Mental health has been receiving a lot of attention recently and for good reason, as it’s expected to be the biggest health challenges of the 21st century. I have the privilege of working for Johnson & Johnson and we’ve been talking a lot about mental health. Not only about the products we offer, but even more in taking care of our 130,000 employees and enabling them to perform at their best. I’ve learned a lot and the statistics are staggering. The leading cause of death of teenage girls is suicide.⁣⁣⁣ ⁣⁣⁣ While we tend to focus on the physical health of people with SMA, I would also encourage people with SMA and their caregivers to make sure you are taking care of yourself mentally as well. In my case, I gradually learned to become comfortable with my disability and have been fortunate to have good mental health overall. However, a few years ago I had a series of personal losses including the unexpected deaths of both my parents. I was having difficulty functioning and began seeing a therapist to help me recover.⁣⁣⁣ ⁣⁣⁣ If you are struggling mentally for whatever reason, reach out to others. What you’ll find is that everybody is struggling in some way. You are not alone. It seems cliché, but we are all human & in this together. Take good care.⁣⁣⁣ ⁣ Love, Doug

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Kevin Schaefer is a writer from Cary, North Carolina with SMA Type II. He studied English at NC State University with concentrations in film studies and creative writing, and since graduating he’s been focused on freelance journalism as well as writing comic book scripts. When he’s not writing or consuming excessive amounts of comic books and movies, he enjoys spending time with family and friends and considers himself blessed that they put up with his ramblings. He is the youngest of three and lives with his parents and dog Pandora. The dog gets the most attention.
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Kevin Schaefer is a writer from Cary, North Carolina with SMA Type II. He studied English at NC State University with concentrations in film studies and creative writing, and since graduating he’s been focused on freelance journalism as well as writing comic book scripts. When he’s not writing or consuming excessive amounts of comic books and movies, he enjoys spending time with family and friends and considers himself blessed that they put up with his ramblings. He is the youngest of three and lives with his parents and dog Pandora. The dog gets the most attention.

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