31 Days of SMA: Independent Living

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Day 10 of 31 Days of SMA⁣⁣⠀ Topic: Independence ⁣⠀ ⁣⠀ This is Tyler's Story:⁣⠀ ⁣⁣⠀ Declaration of Independence — those three words stir a lot of emotions within people. There is something innate in every individual that strives for independence. In culture today, individualism and independence are ingrained into the very fabric of society. Even under the best of circumstances, the expectations thrust upon individuals by society are hard to meet. Now, when independence is coupled with SMA, many of those expectations seem like a pipe dream.⠀ ⁣⠀ The sense of independence has always burned hot within me. For me, to live independently meant three key things: managing my caregivers, choosing work over benefits, and living on my own. ⁣⠀ ⠀ When I was 18, I moved 117 miles away to Waco, TX, and enrolled at Baylor University. Not only did I have to learn what it was like to be on my own, like every other freshman, but I had to also learn how to manage my caregivers. I learned valuable lessons and grew from my mistakes. I went from having one full-time caregiver to, today, having four caregivers who are responsible for different times of the week with a LOT of trial and error in between. I learned how to run interviews, see red flags, trust my intuition, and sometimes find exit plans for caregivers. Choosing to work over receiving benefits was a huge leap of faith. I knew that what I wanted to do, become, and achieve was too great to live under the resource limitations many government programs have. Thankfully, I had some amazing friends and family who got me to the point to where I can now pay for my basic care on my own dollar. ⁣⠀ ⁣⠀ Finally, the coup de grace of independent living was living on my own, ALONE. With home automation going mainstream, I’ve been able to place in technology throughout my home that allows me to leave and come as I want, my whole entertainment system, and much more all by voice, while still maintaining a good level of safety for myself and peace of mind for those who love me. ⁣⠀ That dream of living on your own can sound audacious, but it’s not. It takes putting one foot from the other.

A post shared by SMANewsToday (@smanewstoday) on Aug 10, 2019 at 4:10pm PDT

Author Details

Kevin Schaefer

Kevin is a writer, podcaster, and lover of all things pop-culture. Diagnosed with SMA Type 2 at the age of 18 months, he shares a vast array of hilarious and eye-opening stories from his life with a neuromuscular disability. In addition to his weekly columns, he works as the Director of Forums for this site’s parent company, BioNews. Kevin is a graduate of North Carolina State University and lives with his parents in Cary, NC. People regularly mistake him for Tony Stark, on account of his intellect and advanced technological equipment.

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2 comments

JENNIFER KUCERA says:

August 15, 2019 at 4:22 PM

Hi Kevin! I don’t know if you will see this but I figured I’d take a shot. I am a 50 year old woman with SMA type 1. I just saw this feature be 31 days of SMA. Are they still looking for contributors or stories?? And if so how could I post one and where? Thanks so much and thank you for being out there and sharing with the world!

- Kevin Schaefer says:
  
  August 20, 2019 at 11:48 AM
  
  Hey Jennifer! Check your inbox. I emailed you.

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31 Days of SMA: Independent Living

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