Being Sick and Finding Superman


The last few days I’ve been battling an infection of some kind— with a sore throat, cough and fatigue. Rest assured, I’m definitely on the mend now, though, thanks to a round of antibiotics, and my nebulizer and Cough Assist machines. Three cheers for respiratory gadgets!

Even though I’m an avid reader (I’ve been known to read 50 to 75 books a year), when I’m under the weather I actually don’t do much reading at all. Rather, I like to sit like a hacking, sniffling lump while I watch long movies. And when I say long, I mean really long movies. The kind of movies involving far away wars, people who sing, Nazis, nuns and, of course, Julie Andrews. If you haven’t gotten the hint that I’m talking about The Sound of Music, I’m not sure if we could ever be friends. I’m serious. That movie is the best movie of all time… I say that with utter certainty. If you dare to disagree me with me, I will run you over. This is not an empty threat.

Anyway, I love to watch this film when I’m sick. It’s long, too, which makes it an especially good choice for long afternoons of lazy, snuffly sickiness. Plus, if all that weren’t enough, Captain VonTrapp is super dreamy. When I was young and home sick from school, my mom used to pop the movie in the VCR. It would keep me occupied, and out of her hair, for at least 174 minutes. Any mother would tell you that this fact alone would make that VCR cassette tape worth its weight in gold. And, as soon as I was old enough to operate the VCR remote control, I would repeatedly rewind the tape to watch the marionette puppet scene over and over again. If you don’t know the scene I’m talking about, you haven’t seen this movie. And, if you haven’t seen this movie, well… you know what will happen to you next.

I think it’s safe to say that I have seen this movie over 50 times. This is not an exaggeration. It’s at the top of my list of Movies to Watch When I’m Sick. Other flicks on the list include: Mary Poppins, the Harry Potter movies, musicals written by Rodgers and Hammerstein, and any film starring a Hepburn (either Audrey or Katharine).

This week, I needed to find a long movie to make this sickness pass faster. There was a free preview of HBO, so I checked out the guide on my television. I found Batman v Superman: Dawn of Justice… which was an impressive 183 minutes long. This was doable. I’m not generally a fan of superhero movies, but I have a decided weakness for Henry Cavill— the hunk that plays Superman. So, it seemed like a good choice.

But, it wasn’t too far into the movie that I began to doubt the merit of my selection. Through the fog of antibiotics and decongestant, I watched car chases, tall buildings being felled, and two men wearing capes fighting each other. This last one had me nearly turning off the television. Batman and Superman are both good guys. Under no reasonable storyline would they be at odds. End of story. With a groggy voice, and no one around to hear me, I actually yelled at the TV (okay, maybe I squeaked), “WHO WROTE THIS MOVIE, ANYWAY? WHAT IS EVEN GOING ON? WHY AM I WATCHING THIS? HOLY SHIT, HENRY CAVILL IS HOT.”

Next time I’m sick, I’ll just stick to Julie Andrews.


A Breath of Fresh Air


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!