All a Question of Time: Is There Enough?

Last August, I inhaled something. I wasn’t too worried. It might take a few days, but usually when I inhale something, it comes out on its own. But this time it didn’t.

So, I’ve been doing treatments. For months — six, to be exact. Every morning, we wrap a vest around my chest; when attached to a large, bulky machine, it shakes, sending wave after wave of percussive energy through the outer lining of my lungs, into the muscles themselves. We then attach a mask to my face, sending puffs of white smoke into my lungs. The vest is meant to shake up the mucus; the nebulizer is meant to coax the muscles, stiff and inflexible, into relaxing, like a fist unfurling.

I do this three times a day. Sometimes four, if my lungs are feeling tight. On bad days, it’s hard to breathe, like sucking syrup through a straw. On good days, there’s just a weight — formless, but tangible, and entirely immovable. The treatments last anywhere from 15 to 45 minutes, and then I cough 25 times, aided by an in-exsufflator — five sets of five. Nothing ever comes up, but I do it anyway. It feels vaguely ritualistic.

No one knows what’s wrong with me. My anxiety, of course, leads me to the worst-case scenario — maybe it’s lung cancer, I think, as I read up on bronchoscopies. Maybe I’m going to die. But our working theory is inflammation, which means the only thing I can do is continue with the treatments.

My body is tired. Sometimes it feels like my ribs have cracked beneath all the pressure.

It’s easy to forget how sick I am. How easily I could die.

You never get used to death. It just becomes a kind of paranoia — a tingling in the back of your skull, a warmth, unbearable, spreading through your body. Someone coughs in your vicinity and you think, Pneumonia. A two-month hospital stay. Nothing the doctors can do.

You try to be grateful for the time you’ve been given, but …  You still haven’t been to Europe. And what about that book you’ve been writing? And now that Disney’s announced the name of Star Wars Episode VIII, all you can think about is staying alive long enough to find out who The Last Jedi is in reference to. Rey? Luke? Rey and Luke? Rey and Luke and Finn?)

A universal truth: There is never enough time.

The good news: My lungs are getting better. I’m not in pain all the time, which means it’s probably inflammation and probably not lung cancer.

The bad news: I still haven’t accepted death. Or, I suppose, the inevitability that one day the doctors will be helpless and the fear will creep in, inky black, and I’ll run out of time — for the last time. So, I write poetry about it. I take comfort in the fact that Lin-Manuel Miranda, creator of Hamilton: An American Musical, wrestles with death just as much as I do. I cry about it for a while. And then I tell my best friend I love her, because what else is there in this life?

I wish I could tell you differently, but this is the truth of it: I am scared of death, and that I always will be scared of death; that maybe my purpose in this life is to find a way to sit in the fear, accept it for what it is. So, I press forward, in search of the thing that keeps me brave. Hopefully I’ll be able to share it with you, in time — if there’s time.

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 Services, and are intended to spark discussion about issues pertaining to spinal muscular atrophy.