When you have Spinal Muscular Atrophy, the tiniest cold can turn your lungs into a swamp of mucus, and recovering can take longer than a steamship voyage across the Atlantic. And that’s assuming there are no icebergs that could sink the ship— or, worse, yet, send you to the hospital. So, it’s easy to imagine that if the illness is more than a cold— things can become serious. Recently, I was threatened with a Titanic-sinking hunk of influenza— the most dreaded of respiratory viruses. The punk that attacks during the night, overwhelms your defenses, and turns Leonardo DiCaprio into a blue icicle.
As soon as it hit, I knew exactly what it was— and the danger it posed to me. I had prepared for this moment, and didn’t take it lightly. Keeping my lungs clear was my top priority. I pulled out all my respiratory devices. CoughAssist. BiPAP. Nebulizer. And I started my emergency influenza protocols. Tamiflu. Zithromax. Prednisone. Albuterol.
I had trained well for this moment. I was like those Paris firefighters that protected the Notre-Dame Cathedral. I was not going to let the whole structure fall apart. Sure, I knew my roof was made of really old wood covered in medieval pigeon poop. That just meant I was going to have to work extra hard to save the good bits of the building. But it was definitely worth saving. If cranky French revolutionaries couldn’t defeat me in 1789, I wasn’t going to let a fire do it.
The following days passed in an exhausting whirlwind. Given the complexity of SMA, we can most often receive better care at home. You might find this surprising, but most local medical professionals have little to zero experience with a patient with a rare neuromuscular disability. So, we must become our own advocates. And our doctors become our partners and colleagues… we teach them sometimes more than they can teach us.
Coughing and keeping my lungs clear became a full-time job. In fact, I was so exhausted that I took to blending my food so that I wouldn’t have to waste energy eating and chewing. Yes, I really was that committed. And, yes, a blended Chile Relleno still tastes exactly like a non-blended Chile Relleno. (Unfortunately, it does look like baby poop.)
As my efforts slowly yielded positive results, this didn’t stop the mental toll. The anguishing rotating schedule of respiratory care— in between drinking my meals and trying to rest— didn’t even leave much time for Netflix, which says a lot because I can always find time for Netflix.
I had nightmares about really scary things. Like going to the hospital… being put on a breathing tracheotomy that took away my ability to speak… and, worst of all, Donald Trump tweeting even more than he already does.
After two weeks, I began to see the light. I could go stretches of time without coughing. My doctor noted that my lungs were improving. I was eating solid food again. I stopped dreaming that Robert Mueller was kidnapped by Boris and Natasha. Things were looking up.
And then, I made it to Stanford to receive my 9th injection of Spinraza. It was just the boost that I needed. A physical boost, but perhaps even more importantly, an emotional win. In the days since, I feel my strength slowly returning. It will take time for me to get back to my pre-iceberg self, but I just need to be patient. Wish me luck!
(PS: If you need to find me, I’ll probably be watching Netflix.)