For a person with Spinal Muscular Atrophy (SMA), like me, respiratory care is a key component to our well-being. The muscles closest to our spines are most effected— while the severity of muscle weakness lessens the further you move out to the tips of the extremities. Therefore, to say that the muscles that control my respiratory system are not great would be a vast understatement. It would be like saying that King Henry VIII only had a slight problem not killing his wives.
You know the satisfaction you get from hocking a really big loogie? Yeah, that’s not so easy for someone with SMA. I would love to easily hock a loogie when the occasion warrants. It’s definitely on my all-time wish list of things to do— which includes marrying George Clooney and traveling back in time to buy stock in Apple when they were still making computers in Steve Jobs’ crappy garage.
As a result of my muscle weakness, I also have scoliosis— which further impairs my respiratory function. In fact, my right lung is so squished that it really doesn’t do much. Despite that, I’m quite surprisingly fond of it anyway. It’s decorative and ornamental— like Melania Trump.
Therefore, keeping colds, viruses and flus at bay are essential. A minor cold that would just make you snuffly for a few days can knock me out for a week or two. And, the specter of pneumonia is always hovering over my shoulder— waiting, watching and listening. Just like Vladimir Putin.
Like many with SMA, I use a BiPAP respirator machine at night while I sleep. While I wear a mask similar to those with sleep apnea, this machine instead ebbs and flows with the rhythm of my breathing— like the tides of the ocean or a politician’s approval rating.
However, this machine is not as soothing as it sounds. It bears no resemblance to the nature-sound CDs that they used to sell at Bed, Bath & Beyond for $9.99. It took me over a year to get used to this damn thing. You know a hurricane? Imagine that in your face while you are trying to sleep. For nearly a year, I vacillated between wanting to throw in the towel and return the BiPAP to the doctor… to getting my dad to run over the f$&@ing machine with a John Deere tractor.
Along with my respiratory gadgets, like my BiPAP, I have an assortment of techniques that I’ve developed over the years to prevent infections:
- STAY THE HELL AWAY FROM ANYONE I THINK MAY POTENTIALLY BE SICK. This policy is effective, but it causes me to turn into a veritable hermit from November to March… I can make Howard Hughes seem like a contender for Miss Congeniality.
- IF I MUST BE AROUND SOMEONE SICK, I FORCE THEM TO WASH THEIR HANDS SO OFTEN THAT THE SKIN ON THEIR PALMS SHRIVELS UP AND FALLS OFF. I am not kidding about this. Sometimes I even make them wear a mask. While this may seem excessive, if you were me, you’d do the same. All’s fair in love, war, and microbes.
- I GARGLE, CHEW AND DRINK EVERY FOLKLORIC REMEDY I CAN FIND ONLINE. Listerine mouthwash gargle? Yes. Apple cider vinegar? Duh, of course. Chew raw garlic cloves until your mouth gets blistered? Definitely. And do these work? I am not certain, but my anxiety likes to think they do.
A few days ago, I headed back to Stanford to see the pulmonary specialist and to finish up the loose ends of my Spinraza evaluation. While there, I saw a kiosk at the entrance of the neuroscience building. It had an automatic hand sanitizer dispenser, tissues, and masks— all in one display case. It was amazing. I felt like a kid on Christmas morning— if that kid was a raging hypochondriac. Since I couldn’t feasibly steal the whole display, like I wanted to do, I took a photo by it instead…
Here’s to a cootie-free Spring!