Good Friends and New Adventures

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by Kevin Schaefer |

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(Courtesy of Kevin Schaefer)

Kevin Embracing my inner alien

Last week, I wrote about how living with SMA requires me to be proactive. When I want something or I desire to be more independent, I often have to develop creative solutions to overcome physical limitations and logistical issues. This applies to acquiring caregivers, getting transportation, and so many other things that most people take for granted.

To strive for more independence, I like to try new things without the help of my parents. This weekend, I did something I had never done before. I’m 24, but this past Saturday was the first time I went swimming with just a friend and with no assistance from mom and dad.

Now, the reason I was able to do this is that the pool I use for water therapy offers swim club hours on the weekends and on certain weekdays. Physical therapists (PTs) work during these hours to assist with transfers and to ensure that participants are safe, but they are not there for regular therapy sessions. Anyone who wants to use the pool during these times must either be in the pool by themselves or have someone accompany them.

My PT has been encouraging me to come during one of these time slots for a while now, and I’ve been eager to do so. The only problem I had was figuring out someone to go with. My caregiver Randy works with me during the week, but Saturday is his one day off. My dad was also an option, but again, he also helps me a lot, particularly on the weekends.

Then a door opened up, and I was reminded how I have the coolest friends in the world. I was watching “Black Panther” with my friend Katherine a few weeks ago, and before I regaled her with details about the movie’s place in the Marvel Cinematic Universe and a brief overview of the character’s history in the comics, we spent some time just catching up. I had been sick prior to that, so we hadn’t hung out in a few weeks.

Given that I had just recovered from pneumonia and was trying to take care of my health more, I brought up PT and how I wanted to use the swim club hours. That’s when Katherine offered to go with me and help me out.

I have a lot more confidence now and have become comfortable with friends helping me in a caregiving capacity, but if I were my teenage self and a female friend offered to help me go swimming, I definitely would have peed in my pants and probably would have chickened out. Today, however, I’m more relaxed about trying new things and figuring out the logistics myself.

I told Katherine that swimming with her would be great, and from there, I filled out the paperwork to become part of the pool’s swim club and planned everything out. I made sure we would go on a Saturday when my PT was working, given that she knows how to transfer me in a Hoyer lift, and Katherine could be there to help. My dad got me in my bathing suit and a T-shirt that morning and put me in my chair, then Katherine came by my house to pick me up.

The transfer process went smoothly, and I knew the biggest challenge would be making sure I was good in the pool. Katherine and I have been friends for close to four years now, and while she’s helped me out when we were in school or when we’re hanging out, helping me in the pool was new for her.

Nevertheless, she listened to me the whole time and was extremely careful. I had on a neck collar, which I usually use during aquatic therapy. Still, it’s hard for me to stay balanced in the water and not move around, and as such I either put my arm around Katherine, or she held on to me. From there I was able to kick and stretch my arms like I usually do when I’m in the water. I felt safe with her, and as she held me gently I knew everything would be OK. We had a great time, and it’s moments like these that remind me how important it is to take a leap of faith and to trust the right people.

I’m fortunate enough to have the best friends and family anyone could ask for. Katherine is one of the special people in my life who I can talk to about anything, who has never looked at me differently because of my SMA, and who I don’t feel awkward asking for help. While I have plenty of casual friendships and I know a lot of people, it’s the true friendships I have that mean the most to me.


Note: SMA News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of SMA News Today, or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to spinal muscular atrophy.


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