Getting Back In the Pool After Surgery With SMA

Having spinal muscular atrophy (SMA) means relying on a powered wheelchair for mobility. While my wheelchairs and assistive gear offer a sense of freedom, nothing beats the sheer delight of swimming. Growing up, our family vacations to different states always involved splashing in hotel pools. Some of my dearest memories center around those swims with my mom and dad.

Giving up swimming for years

I vividly recall a trip to Florida when I was around ten years old, just before my spinal fusion surgery for scoliosis. It stands out in my memory because it marked the last time I ventured into the water for years. Following the surgery, I had to refrain from many activities due to the new metal hardware keeping my spine in alignment. Wearing a back brace for years further diminished my confidence, making me hesitant to return to the swimming pool. And that was perfectly fine; I understood I wasn't mentally or physically prepared.

Prior to surgery, I used to get in a pool and walk along the shallow part on my tippy toes with assistance. I was even strong enough tot sit on the pool steps with toys and play for hours if allowed. My dad would take me into the deep end and help me dunk my head under the water. Letting him and my mom hold me, allowed my little body to move freely since it so rarely got to do so.

Able to move my body freely in the water

It was glorious.

Something happens in the water with the lack of gravity being nonexistent. I can actually move as I assume an able bodied person might. Movement of any kind doesn’t come without assistance or feeling like I’m being sat on by an elephant.

But not in the water.

Sometimes I wish I were a fish because I’d live in the water forever if it meant my body  could move. But alas, I have no gills.

After my spinal fusion my body just didn’t feel right, it felt weaker, which it was. It felt foreign and not my own for a really long time. Which I’ll talk about in another post. At that point I pretty much gave up on getting in the water again.

After few years passed; I eventually started to feel more like myself. At that point I was  more daring with what I was comfortable doing outside of being in my wheelchair.  I was able to ditch my back brace completely for good. That made my body slowly feel like it used to prior to surgery.

In 2022, with help from my amazing family I was able to get back in the swimming pool with some assistance.

We ended up using one of my hoyer lift slings with handles to carry me into the pool. While still in my wheelchair we were able to shimmy the sling under my body. Then we were set to hit the water. It took my mom, aunt, uncle, sister and brother in law to safely get me into the pool.

I was filled with anxiety. I didn’t know how my body would function in the water after all this time.  Would I be too weak? Am I going to fall all over the place due to not being in a certain position in my wheelchair? Will I have a panic attack? (Spoiler: I had an anxiety attack.)

Everyone was wonderful about keeping me as calm as possible and assuring me they were right there. They assured me they wouldn’t let anything happen to me. Which I knew they wouldn’t, but it’s still nerve racking being at the mercy of someone else when your body does what it wants anyway, even in your wheelchair.

Once I got in the water and calmed myself I relaxed and just floated. Turns out all my body wanted to do was float. For some reason, I’m assuming due to lack of muscle tone, my body was like a floatation device. My legs wouldnt stay down in the water on their own, which was new. My mom and aunt and uncle took turns holding my neck and head above water.

Slaying afloat

It was so glorious to be able to move my body in ways I hadn’t moved in so long. My hips and legs were able to slowly move with the water. I used my arms to slowly propel myself around the pool with assistance. We tried a few different swimming floaties to see if they would offer some help, but unfortunately they ended up not working in my favor. I didn’t have the strength to stay situated in them safely.

Surprisingly, what did work was a blow up air travel neck pillow. We ended up wedging that under my neck and I was able to independently float all around the pool! I’ve found that with spinal muscular atrophy the most unconventional of things work the best in assisting us with different tasks.

I was so happy to have that few hours of independence and to be able to bond with my uncle and aunt in ways I typically wouldn’t. It also allowed them to see a different side to my daily struggles and allowed my nephews the chance to see that I can do the same things they do, with a little extra help and encouragement.

It takes a tribe for people with spinal muscular atrophy and often with other disabilities as well to do anything. I’m so thankful for the tribe of family and friends I’ve had around me that have helped allow me to regain lost experiences and create new memories over the years. I’m so thankful to be able to experience that freedom again of being in the water. I continue to enjoy the pool every summer and hope to do so as long as my body allows it.