The Importance of Wearing Your Seatbelt with SMA

In my younger days, donning my belt each morning was a steadfast ritual. It was something I did everyday, like brushing my teeth. Annoying? Undoubtedly. A safety measure? Absolutely.

The seatbelt on my wheelchair

As my journey progressed into middle school, a subtle shift occurred. The indoor seatbelt, once an unwavering companion, became less of a fixture. A perceived hindrance to my ability to lean down or reach for items. With a slight gain in stomach weight, the seatbelt's restriction felt like it was holding me back. Not wearing the seatbelt seemed to grant me more freedom.

Little did I realize how unsafe this choice was, despite well-intentioned warnings. I felt like, at the time, I could move my body better without it being on. For those of us with spinal muscular atrophy (SMA) we know how important keeping our mobility is.

Close calls peppered my journey. I almost toppled from my chair while reaching for something a few times.  

Thankfully, I always possessed the strength or means to catch myself, averting potential disasters.

My luck ran dry about five years ago

It was mid November, a week before thanksgiving. I was twenty three and had just finished dinner. I was heading back into my bedroom to play some video games when fate dealt a harsh hand. A malfunction in my wheelchair, an unexpected shutdown, and a subtle force sent me plummeting face-first onto unyielding hardwood flooring. With no way of stopping myself I met the floor like a sack of potatoes.

A painful fall

Amidst the pain, terror, and the initial instinct to blame the world briefly, I found myself lying face down. Screaming for my mom initiated a chaotic flurry of activity. The vivid sound of my dad's recliner closing, accompanied by the thundering paws of four dogs, marked their sprint down the hallway. In the midst of the canine confusion, my dad carefully rolled me over, revealing a bleeding upper lip. During the fall, my lip had managed to go through my upper teeth. My dad had to slide my lip off my teeth to cease the bleeding while my mom held me upright.

Fueled by adrenaline and anxiety, I navigated the delicate process of informing my parents about the injuries. I didn’t have time to panic because I needed to be calm to direct them on what I needed and how I needed it done to mitigate more injuries. Immediate assessments pointed to a likely broken right wrist, instantly swollen and agonizingly painful. The realization of a significant pain in my left knee, though uncertain if it was broken, added to the distress. I’d injured my knee before now and the pain felt the same as it had previous so I was unsure if it was broken as well.

A trip to the emergency room

Realizing the urgency, the snowy back road we lived on made getting help tricky. Mom and Dad gently moved me via a blanket, checked injuries, and improvised a splint with a paint stirrer.

911 couldn't reach us, so my parents lifted me into dad's 4WD truck. Agonizing pain in my leg and wrist intensified in the cold night. I longed for sleep, but Mom's watchful eye kept me awake until we arrived at the hospital. We weren’t sure if had a concussion or if I had blacked out completely when I fell.

The subsequent medical saga unfolded with a series of tests—head, neck, and back CT scans, x-rays on my left knee and right wrist. The verdict confirmed a broken wrist and a fractured femur. My lip was cleaned and the cut was deemed bad enough to need several stitches. Mercifully, no brain injuries or complications with the rods from my spinal fusion emerged. Two doses of fentanyl provided momentary relief as the medical team set my wrist and femur.

The hospital wasn't familiar with SMA

Yet, the hospital's unfamiliarity with SMA left them grappling with the best course of action. A few days later, a sports medicine orthopedic specialist offered more clarity. Bedridden and dependent on ambulance transport to my orthopedic appointment, I learned that my injuries warranted surgery. However, my severe osteoporosis cast doubt on the efficacy of screws and pins, prompting a more conservative approach.

The aftermath became a prolonged period of healing in bed for over two months. During my healing time I survived on macaroni and cheese and Taco Bell Strawberry Freeze's, given my inability to chew. At the time we thought my lip being bruised and swollen was why I couldn’t chew or eat. Later we found out my jaw had been broken. The hindsight realization was stark—I questioned whether this heartache could have been preempted had I been wearing my seatbelt. Yes, injuries might have occurred, but the severity remains a haunting uncertainty. This plea echoes through the corridors of anyone with a wheelchair and SMA—please, wear your seatbelts and adhere to safety measures. They exist for a reason.

Permanent complications from the accident

To this day, the repercussions of that traumatic incident persist. Unfortunately my right wrist functions abnormally, permanently altered. The right wrist healed to a point where I no longer have a joint. The left femur and knee regained enough function for the simple act of sitting in my wheelchair. Daily pain is an unwelcome companion, and a dental surgeon's revelation unfolded yet another layer—I had broken my upper jaw palate during the traumatic fall.

Months of healing became a saga, a journey where the repercussions lingered far beyond the incident. Hindsight, as they say, is 20/20, and my earnest hope is that this narrative serves as a catalyst for change before it's too late—before tragedy strikes. Seatbelts aren't just restraints; they are our silent protectors, and my tale stands as a testament to their significance. Please where your seatbelt. I know I do, now.