Why I want to be admitted to ‘The Pitt’ as a young adult with SMA

I once read that fear is the other side of the coin to excitement, pleasure, or comfort. Without any research into whether the statement is true or false (it’s true), I nodded and said, “That makes sense.” Why else would people seek out horror films, roller coasters, even kink? It seemed to me that our brains somehow developed a way to make discomfort enjoyable, to make life easier to survive.

I attribute my attraction toward medical dramas to this strange mechanism. As much as healthcare practitioners try to make it otherwise, hospitals are still frightening and traumatic places, even if you’ve spent half of your life in them, as I have. You’d think I would avoid medical dramas at all costs, given the trauma I’ve sustained over the years because of SMA and other health complications. But like a moth to flame, I find them comforting.

While my caregivers look away or gawk at the blood, gore, and death on my screen, you can find me calmly glued to it, watching episode after episode. Hell, I finished over 20 seasons of “Grey’s Anatomy” in a month two years ago.

So it shouldn’t be surprising that I’ve fallen in love with “The Pitt” — and am begging the creative team to feature more rare disease patients (and maybe cast me?) in future seasons.

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The first emergency room I would voluntarily visit

“The Pitt” has been hailed as “the most accurate medical series of all time,” an opinion I endorse. Its setting, the Pittsburgh Trauma Medical Center, may be fictional and set in the United States, but a million details remind me of real-life emergency rooms here in Singapore, where I live.

I don’t just mean in terms of the procedures depicted on the show — though certainly, the number of nerve blocks used makes me miss my pain specialist. I mean it in terms of things like mannerisms the actors adopted for passing tools, staff dynamics, the center’s chronic underfunding and understaffing, the fluorescent lights and overstimulating nature of an emergency room, how healthcare practitioners often stay late and retraumatize themselves to care for others, and the relationships they have with patients.

As a patient who’s spent 26 years in and out of hospitals, these are things you cannot help but notice. Naturally, you start to wonder how a creative team with such a high level of care toward healthcare practitioners, patients, and the medicine would deal with your rare disease.

The possibility of using SMA for drama makes me nonsensically giddy. But can you blame me, given that it’s a condition too few healthcare practitioners have touched and no drama series has depicted thoroughly, if at all? SMA patients are notorious for difficult veins alone. What happens when one with a hunchback can’t be X-rayed properly? If their vitals are too low to rely on a BiPAP, but intubation endangers their quality of life? If ketoacidosis from lack of food consumption isn’t caught quickly enough?

What do you do when you see a young adult with SMA in front of you and know that the disease can be treated directly, but that this patient is a generation too late to reap the benefits of such treatments? How do patients and their doctors process that? How do they walk caregivers through the grief of losing part or all of someone they love?

The most accurate representation of a patient

Sure, part of me is proposing producer-writer-actor Noah Wyle and company consider depicting SMA so I can get an acting job. This show comes in a season where I am in the midst of training for theater, with working on TV and film in mind.

The thing is, I haven’t wanted to play a patient until watching “The Pitt.” I wanted the opposite, in fact. Disabled people often get scripts for their disabilities, not for their emotional and creative capabilities for character work. I wanted to avoid that.

But “The Pitt” somehow takes an average case and humanizes it. Even though we never see them after they leave the emergency room, the patients become people with stories you can’t help investing in. A woman with sickle cell has her wife next to her. An older lady asks Wyle’s character, Dr. Robby, for a dance. Frequent visitors to the hospital greet the doctors like old friends.

I believe that if a character with SMA indeed materializes, audiences won’t just walk away with medical knowledge. They’ll walk away seeing their parent, sibling, friend, or themselves in the character. I’d be happy for anyone who gets that role.

For young adults with SMA, everything that can go wrong generally will go wrong. Life with this disease is high stakes — especially if the patient has worked as an advocate, as many of us have. It’s made for drama. And it’s desperately in need of the type of representation and awareness “The Pitt” can give it.

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