Yep, I’m going there. If you’re easily turned off by poop jokes, just skip this column.
SMA is tough, but diarrhea causes me pain and discomfort unlike anything else. When my body experiences this ungodly phenomenon, I want nothing more than to be able to jump out of my chair or bed and sprint to the bathroom faster than Barry Allen.
Instead, due to my limitations, when I experience diarrhea, a rather awkward and uncomfortable situation unfolds. To truly comprehend the discomfort I feel when it happens, let’s imagine I’m in bed for the night. See, if I’m in my wheelchair, I only have to get from my chair to the bathroom seat when I need to go. If I’m in bed and I have to go, several more transfers are required.
The scene plays out something like this:
Urgh, I gotta go really bad. I debate for a few moments in my head if I can hold it until morning. I realize I can’t, and sigh.
Dad comes in a moment later, thinking I need to change positions or adjust my pillow.
Me: “I’m really sorry, but I gotta go to the bathroom really bad.”
Dad recognizes the urgency of the situation and gets our electronic Hoyer lift ready ASAP. He then brings over the sling which attaches to the lift, puts it under me and wraps me in it, attaches each of the four straps of the sling to the lift, then checks to make sure I’m strapped in. Next, he presses a button to raise the lift and slides it across the room to my chair while I remain safely wrapped in the sling like a cocoon. Meanwhile, my stomach feels like it’s about to explode at any second.
Once I’m in my chair, Dad removes the sling from underneath me and moves my right hand over to my joystick. The only thing that saves time here is that because I sleep in the nude (I know, sexy), Dad doesn’t have to worry about removing my pants.
I then drive to the bathroom on the other side of the house while Dad follows behind me with the lift. Once we’re in, I park my chair and Dad gets my bathroom seat set up by the toilet. Then Dad grabs a different sling than the one in my room and wraps me in it. The one in my room is designed to pick me up from a lying position and into a sitting position, or vice versa; the one in my bathroom gets me from a sitting position to a sitting position. This one has six straps, which means it takes a few extra seconds to strap me in.
As Dad transfers me from my chair to the bathroom seat using the lift, the diarrhea in me rages on and I feel as though my stomach will burst. The image of Kurt Russell blasting the alien monster in John Carpenter’s classic science fiction film “The Thing” springs to mind.
At last, I am on the bathroom seat and Dad removes the sling so that I can unload. I experience an odd mix of feelings as the waste is released from my body: happiness, exhaustion, discomfort, anxiety about how long this will take, and anger at myself for stuffing myself with that Domino’s pizza earlier in the evening. Sometimes it comes on even when I don’t eat like a pig, and that makes me really despise diarrhea.
Once finished, I call Dad to let him know the deed is done. He comes in, flushes the toilet, wipes my butt, and then we repeat the process from earlier, only in reverse. We’re both exhausted by this time, and I can’t wait to get back in bed. As soon as my head is on my pillow, I doze off and try to enjoy the hours of sleep I still have.
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.