Cleaning Up After SMA’s Messes Is a Dirty Job
With that headline, I’d expect this column to belong to my friend and SMA News Today colleague Kevin Schaefer. After all, he’s not shy about sharing less than pleasant aspects of living with SMA, including detailed stories about his trips to the bathroom.
But believe it or not, this is my column, and today we’re talking about a rather unglamorous side of SMA. It might not be recommended dinner conversation, but we can’t ignore the fact that SMA is messy. Those of us who live with it experience this firsthand every single day, and so do our families and caregivers, who have the not-so-fun task of cleaning up after SMA’s messes.
I have copious amounts of medical supplies that have to be taken apart, soaked in soapy water, washed, and left out to dry multiple times each day. Nearly all of my machines come with little pieces that need constant cleaning.
The biggest culprit is my cough assist machine, which blows air in and out of my lungs to simulate a natural cough since I lack the strength to effectively cough on my own. The purpose is to remove any mucus from my lungs through my tracheostomy tube.
We use this machine as part of the breathing treatment routine I do three times a day to keep my lungs clear and healthy. We also use it throughout the day and night whenever my congestion becomes unmanageable.
Beyond the routine uses, it can get hard to count how often we use the cough assist on any given day. Sometimes I can barely leave it for five minutes before I must return. Since its primary function is to remove mucus, each use fills its trach adapter and tubing with — you guessed it — mucus, which someone must wash out so that these pieces can be used again later.
Gross, I know. Trust me, we find it even more gross than you do.
With all that dirty cough assist equipment and other pieces of equipment that need washing, my mom and nurses spend significant time making sure everything is clean enough to be reused and arranging it on the countertop to dry. Since bowls, sinks, and the tub were used to hold a mountain of dirty tubes during the cleaning process, they’ll also need to be cleaned afterward to ensure no mucus or bacteria linger there.
Anyone who helps clean up this slimy mess, for me or anyone else, should receive a reward. I doubt anyone wants to handle mucus that came out of someone else’s lungs. I don’t. But they do it anyway because they love us. You know someone must care about you if they’re willing to rinse that yucky stuff down the drain for you.
While SMA gives us more than enough to clean, it also gives us plenty to throw away. Even those cough assist tubes have to be thrown out eventually. You can only clean them so many times before you just have to let them go.
Additionally, anything that’s produced for medical use comes individually wrapped in lots of packaging, and most of it is intended to be thrown away after one use.
Suction catheters are a perfect example. They come in their own sealed plastic containers, which include disposable gloves wrapped in sterile paper that separates them from each other and the catheter. All of this will be thrown away within minutes.
This only scratches the surface of the time that has to be spent cleaning up after SMA. And keep in mind that this is on top of usual household chores and the rest of my care. Someone still has to cook, sweep, mop, dust, clean bathrooms, do laundry, wash dishes, feed the dogs, water the garden, tidy up, complete all of my care, and more.
Another friend and fellow SMA News Today columnist, Brianna Albers, once said that having a body, especially a disabled body, is a full-time job. It turns out that cleaning up after a disabled body is also a full-time job, and it can be a dirty one. That means Mike Rowe should feature it on his show, “Dirty Jobs,” right? Mike, if you’re reading this, we’re ready to start filming.
Often, we only show you the more palatable parts of life with a disability. We shield ourselves so you don’t see all that mucus. We don’t post pictures of the second bag of medical garbage going out to the trash can that day.
Chances are that you don’t realize the extent of the time, energy, and cleanup that happens in a day with SMA unless you’ve lived it. Let’s try to remember that everyone probably has something messy going on in their life, figuratively or literally. We just might not always see it.
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, and are intended to spark discussion about issues pertaining to spinal muscular atrophy.
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