To say that SMA can throw a curveball at you at any given moment is like saying that the “Star Wars” prequels could’ve benefited from more rewrites. There are some things that just go without saying, and every person who has SMA knows how unpredictable and difficult this disease can be.
Two weeks ago I was doing great. I was in Maryland speaking on a panel between Cure SMA and the FDA about current and future treatments, and how having SMA has impacted my life. It was a fantastic conference, and each of the panelists there brought a unique perspective regarding what they were looking for in a treatment. Two weeks ago I felt like I was on top of the world, contributing to something that was of vast importance to myself and everyone else with SMA.
Yet as I said above, SMA is totally unpredictable. That Tuesday night after the conference was over, I was in my hotel room trying to go to the bathroom when a curveball came at me. It was just my Mom and I, and just as she was using my hoyer lift to transfer me from my wheelchair to my bathroom seat, before either of us knew it I had slipped out of the sling and fell to the ground. It happened quickly, and fortunately my Mom is great at reacting fast in situations like this, but I remember my right leg had gotten caught in the sling and was suspended in the air for a few seconds before my Mom could get it down.
Now, this is the fourth time in my life that I’ve broken my right femur, but each time brings its own set of challenges. The thing that made this one different is that we initially thought it was just bruised. I had already fallen out of my hoyer lift a few years ago, and managed to get away without any broken bones then. This time started with a manageable amount of pain, and my Mom and I were hopeful that nothing was broken. She got me back in bed so I could rest for the night as we were headed home the next day, and after a few episodes of Parks and Recreation I tried to get my mind off the accident.
The next day came, and while getting dressed and transferring into my chair was rough, it was still somewhat manageable. Even if it was closer to excruciating, I guess my pain tolerance has just increased over the years with all the broken bones and surgeries that I’ve been through. Once I was up in my chair, we stopped in D.C. on the way home to meet my cousins at the Newseum for a couple of hours. This helped, as it got my mind off everything for a bit and it was a cool museum. My parents and I are big journalism buffs, so it was cool seeing all of the exhibits and memorabilia there. From there we grabbed lunch and headed home, and I was still optimistic that my leg was just bruised and would only be sore for a few days.
However, that night when we got home, my pain significantly increased as my caregiver transferred me to the bathroom and bed. That sense of excruciating pain that I remember well from previous broken bones was back, and I knew then that this wouldn’t end without a hospital visit.
Sure enough, the next day when I checked into the ER, the X-rays and CT scans revealed a partial fracture along the area connecting my hip and femur. It wasn’t the worst break I’ve ever had, but it hurt. That Thursday was by far the worst, as my parents and I were kept in the ER for 15 hours before I finally got moved into a room with a hospital bed.
My caregiver and his girlfriend were also nice enough to stay with me for the afternoon and early evening until my Dad could get off work. Since my Dad and caregiver are the only ones who can lift me, I needed one of them to transfer me for the X-rays and CT scans. That’s the thing about SMA: It requires constant planning and adapting.
That day was downright miserable, and it came only two days after a truly great day. SMA is a relentless, unpredictable, and monstrous disease which can inflict trouble at any given moment.
I don’t say any of this to request pity, and I assure you that the second half of this story is more positive, but it’s important that others know just how difficult and overwhelming this disease can be at times. Please be sure to read my next column, which will be a continuation of this one.
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.