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  • A Little Encouragement for Homebodies with SMA

    Posted by kevin-schaefer on April 24, 2018 at 3:10 pm

    For those of you who read the columns section here on SMA News Today, you’ve probably come across mine at some point. In my column “Embracing My Inner Alien,” I write about everything from my daily life, to how I went from trying to be “normal” when I was younger, to fully embracing my disability and the unique perspective I have. I also inject plenty of pop-culture references into all of my articles.

    Now that we have the forums here, I’m going to start using this platform to do a sort of continuation of my column. I always have plenty of material to write about, and honestly writing articles once a week is somewhat restricting for me. I could talk about myself all day, everyday!

    Today, I just wanted to share a little bit about my week and some of the fun things I’ve been doing. Too often I hear stories from other people with disabilities who are always at home and not terribly social. I get that it’s tough to be active when you have a disability that puts numerous physical restrictions on you, and often it does take extra work for us to go to social events. But I just wanted to encourage people who feel kind of stuck in that rut to just take those risks and get out more.

    Let me just say that I work from home and I live with my parents. I definitely have times where I feel anxiety about how I’m supposed to be on my own and totally independent. When I think about what a lot of my college friends are doing now and experiencing things that I haven’t, that anxiety sets in. Whenever you have those thoughts, know that you’re not alone.

    Nevertheless, I’ve come to accept my disability and to not let it get in the way of me living my life. Just in the last week and a half I’ve gone to two parties, a new movie theater, a baseball game, church, a food truck rodeo, my local comic shop, several restaurants and a reading of the sonnets of Shakespeare that was put on by a local theater troupe. I’m kind of a nerd, and my friend Katherine said I was the only person she knew who would jump at the chance to go to something like that with her. We had a blast, and both of us read sonnets at the event.

    I’ve also recorded podcasts, worked on my comic scripts, watched movies and read a lot. I’m currently reading Zach Anner’s hilarious memoir “If at Birth You Don’t Succeed,” which is one that I recommend for anyone who has a disability. Reading everyday helps keep my mind focused, especially when I’m feeling moody or depressed.

    Also, in all of the social scenarios I mentioned above, I went with either friends or my brother. I used to be really anxious about having anyone other than my parents drive me, but once I got over that and my parents were cool with friends driving me, it became extremely liberating. Though I have to be a little more adamant about planning to hang out with friends now that we’re out of college and everyone has busy schedules, it’s well worth it. I make plans with friends at least once a week, and I feel better when I do get out regularly.

    I say all of this just to encourage my SMA brothers and sisters out there. We’re just as capable of exciting lifestyles as anyone else, and I believe it’s important for us to make time for friends and getting out.

    And please, if you or someone with SMA you know is struggling with finding that group of people to hang out with or whatever, please talk to me. I don’t want to just write about my life; I want to help others in this community find fulfillment and to help them live active and productive lives.

    kevin-schaefer replied 6 years ago 1 Member · 0 Replies
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