Illness Becomes Chronic, But I’m Taking ‘My Shot’

The surgeon didn’t find anything wrong with my lungs. They are, in her words, “perfectly clear.”

Still, there was a significant amount of congestion around my voice box, which apparently explains the tightness in my chest. It just feels like there’s something in my lungs, even though they’re probably the healthiest they’ve been in over a decade, if not longer.

The surgeon referred me to an ENT (Ears, Nose, and Throat), and sent me home with three different kinds of nose sprays. She also prescribed me some eye drops that, when applied to the inside of my lower lip, will dry my mouth and, hopefully, clear up some of the congestion.

My dad was elated. My mom bought ice cream for the three of us — partly in celebration, but mostly to make up for the gallon of Coldstone Creamery’s “Cookie Doughn’t You Want Some” she ruined the other day by nuking it for 30 seconds in the microwave.

I woke up in the operating room with a smile on my face. “Alive,” I thought. “I’m alive.”

It’s amazing how much of my life has been put on hold. And not just because of the bronchoscopy, either. (There were interviews I didn’t schedule, papers I didn’t work on, and books I didn’t read. Mainly because there was a part of me — an illogical, anxiety-ridden, traumatized part of me, but a part of me all the same — that was so sure I wouldn’t survive the procedure.) I’ve been healthy for so long that having this thing inside me brought me to my knees.

I wasn’t suicidal. I didn’t think or fantasize about killing myself. But I did think about death — when it would come to me, what form it would take, how it would feel to finally leave this body behind and enter something unknown and vague.

Strangely enough, right about the time my illness became chronic, I discovered Hamilton: An American Musical, so I’m not exaggerating when I say that Lin-Manuel Miranda’s lyrics in “My Shot” have followed me through this dark, endless tunnel:

“I imagine death so much it feels more like a memory. When’s it gonna get me? In my sleep? Seven feet ahead of me? If I see it comin’, do I run or do I let it be? Is it like a beat without a melody?” Ironically, when Miranda sings I couldn’t seem to die in “Hurricane,” I always hear it as I’m not afraid to die.”

But the truth, of course, is this: Both Hamilton and I are afraid to die.

So now I am through the tunnel, and there is light — pin-pricked, gauzy, but something for these hands to grasp. Am I still afraid of death? Of course. I probably always will be. But I am suddenly faced with the prospect of living a life I did not plan for. I graduate this December. I have the first issue of my magazine to work on, to put out. I’m traveling to New York City at the end of May, but nothing beyond the train tickets and the hotel/resort reservations have been finalized. The world is waiting, opening itself up for me, but this illness has me scared to step outside my front door. Everything is thrilling and bright and fast —  fast, too fast for a body that has only known slowness for the better part of a year.

During Wednesday’s pre-op, a nurse went through my list of diagnoses. She mentioned restrictive lung disease (RLD), which is one I had forgotten. You don’t recover from RLD; it’s not something you can cure. Rather, it just is. Chronic, like everything else about me — a reminder, I think, that life cannot, and should not, be put on hold. Not for fear. Not for death. Not for fear of death.

I am through the tunnel, and the illness remains. So what do I do? How do I begin to live again?

Hamilton says it best: See, I never thought I’d live past twenty. Where I come from some get half as many. Ask anybody why we livin’ fast and we laugh, reach for a flask, we have to make this moment last, that’s plenty.

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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.