I’m Not Scared Of Death, But I Can’t Stop Asking This One Question

I assumed the throbbing pain and loud clicking in my shoulder was a simple injury from a fall, but the physio suspects some underlying condition and insists I head straight to the emergency department.

First, though, I head home. I let my husband know, grab a notebook, reassure the kids, make sure the cats are fed, and drive myself to the hospital.

As I search for a carpark, the final scenes of a movie I watched last night with my oldest girls run through my head.

As musical lovers, we decided to watch Tik Tik Boom. It tells the story of writer Jonathan Larson, and his struggles to produce a well-received musical.

Larson was 35 years old when he died. 8 years younger than I am today. Since watching the movie, I can’t seem to let go of a question it brought back up for me.

It’s a question I’ve asked myself many times since being diagnosed with an immune disorder 15 years ago:

If I die today, have I done enough with my life?

Like many artists and writers, Jonathan Larson died before witnessing the impact his life had on the world.

It was after midnight on the night of January 24, 1996, when Larson returned home from the final rehearsal of his musical. He’d been experiencing severe chest pains all week, but doctors reassured him it was a virus or food poisoning of some kind, and he’d pushed through to finish what he’d started years earlier.

The following day his show would debut at the New York Theater Workshop. It was finally happening, everything he’d worked so hard for.

He stood in his kitchen, making a cup of tea before bed. Moments later he collapsed on the floor. Larson died of an aortic aneurysm that night and never saw the opening of his now famous show, Rent.

People with chronic illnesses like myself, or surrounded by friends with chronic illnesses, as Larson was, know death has its own schedule.

It used to scare me more than it does now. What scares me most isn’t the actual dying, but dying before I’ve done anything significant.

What scares me most isn’t the actual dying, but dying before I’ve done anything significant.

Larson, surrounded by friends who died young in the AIDS epidemic, felt an urgency to leave his mark on the world before it was too late.

And he did exactly that.

Larson’s legacy of music transformed how musicals are written and viewed.

In society’s opinion, Larson’s life was significant enough for Netflix to air his story and for millions of us to watch it.

But did it feel like enough to him? I like to think he knew he was making an impact.

It’s made me wonder: what would feel like enough to me?

Like Larson, I feel the ticking urgency of life.

At 43, I’ve now lived with Crohn’s Disease for most of my adult years.

Crohn’s is an incurable, partly inherited, disease that affects the intestines and can be life-threatening if it’s not kept under control.

A few years ago, my cousin was rushed to intensive care when bleeding caused by her Crohn’s disease couldn’t be stopped. She’d been happily traveling on vacation only days earlier. They managed to save her life, but she lost a large section of her bowel.

When I was first diagnosed, I lost 24 pounds in 14 days, spent weeks in the hospital where they were unable to control the pain, even on morphine, and then 6 months drinking my meals in liquid form. I lost years of my twenties to bedrest and illness.

Since then, I’ve managed to keep my Crohn’s in remission with immune-suppressing drugs, a shelf full of vitamins, and a careful diet.

But being immunocompromised comes with a myriad of complications and surprise illnesses.

A good chunk of my life is spent in hospital waiting rooms, like the one I’m in today.

I walk through the automatic doors and greet the receptionists, whose faces I see more often than my sister’s.

“Take a seat near the front to be triaged,” the older woman tells me, handing me a form.

Her eyes crinkle in a way that shows she’s smiling under her mask. I smile back, but I’m not sure if she can see it or if my own eyes are too full of anxiety.

Am I about to face another condition that steals away parts of my life?

I push down my fears and pretend going to the emergency room isn’t a big deal. After all, I do it so often.

Surveying the green vinyl chairs, arranged like a maze, I take the most socially-distanced seat I can find, two seats across from a young woman and her tiny baby.

In the waiting room, I drop my gaze to the speckled lino floor. I’m not in the mood for small talk.

Before I left, my husband had held me and tried his best to make the situation light.

“If they come at you with Lupus or cancer say ‘Yep, okay but what I’m really worried about is this broken nail I got yesterday.”

Laughing helps.

But I had plans today to spend time with my girls; I had articles to write and research to do. I’d rather not spend another afternoon sitting in a hospital room worrying about my health.

I come prepared for a long silent wait, armed with a book or something to write with, and, because we have four kids, I usually come alone.

I’m not sure why it’s always a shock when my body fails.

Maybe it’s not a shock, but I’m always disappointed. It feels like a personal failure rather than a physical one.

It feels like a personal failure rather than a physical one.

In my teens and early 20s, I was an athlete. For more than ten hours a week, I trained on ice as a figure skater. The rest of the week I studied hard at school or university and spent my free time running, playing touch rugby, swimming, and bike riding.

I was driven.

An overachiever.

On the outside, I still look healthy and fit. I look in the mirror and fool myself into thinking I’m the person I used to be.

But not being able to commit to a sport, or even regular exercise of any kind feels like a failure.

Not being able to push as hard as I want to at work feels like a failure.

I used to imagine I’d write historical novels. I got halfway through one in my early 30s.

But lengthy novel writing became too much, so I switched to 1000-word articles that I sell to women’s magazines. It’s satisfying, but I know it doesn’t make anywhere near the impact a longer work would.

I’ve been a writer for over 13 years and far from the level I’d like to be.

If I was well, would I be holding my own full-length book in my hands? Maybe a deeply researched and gorgeously told one, like a Barbara Kingsolver historical novel or even a YA novel like Lois Lowry’s The Giver?

I’m not sure I’d ever be that good even if I was healthy.

It’s frustrating to think I’ll never find out.

I still feel the same internal drive I had in my 20s–the drive to succeed, compete, and achieve at a high level in everything I do. I try to push myself, but like a silent terrorist, my immune system sabotages my efforts.

My hospital records are an Encyclopedia Britannica.

I try my best to live between attacks, or around attacks, and lately, I’ve been trying to just carry on through the attacks because they’re getting closer together as I get older. Some days I cope and some days it overwhelms me.

I’m tired.

I’m beyond tired.

I’m tired of managing new disorders, juggling new medications, listening to specialists make their best guesses, tip their heads in pity, or worse: treat me like a circus attraction.

“This is really unusual! We don’t see this a lot in people your age.”

It’s getting harder to stay hopeful and on top of things all the time.

When I’m in hospital I run through a mental checklist to stay positive–“Your work matters” is one of the items on my list.

I think about the impact of my kids seeing me do work I love; work that I hope makes a small difference in people’s lives.

But is it enough?

Or is seeing me sick all the time making the bigger impact?

Sitting in the hospital waiting room, I have no idea what today’s diagnosis will be and I can’t help feeling scared.

After 4 hours a nurse calls my name. She holds the door open for me and smiles a tight-lipped half smile.

She looks tired too.

“So it’s this arm?” she asks. I nod.

“Does this hurt?” She guides my arm toward the ceiling, lifting it until I wince.

Placing my arm back on my knee, the nurse practitioner turns and speaks to her notes.

“Your physio suspects an immune problem affecting your muscles.”

She types something into her computer. Frowns.

“I think it’s just your shoulder, but I’d like to consult with the doctor on duty. I’ll be right back.”

I sit and stare at the green speckled floor while she talks to a doctor. In the hallway, I can hear her listing off immune disorders, medical history, and symptoms.

I squeeze my hands into fists, hoping she’s right and the physio is wrong.

I’d spent the morning scrolling the internet and reading awful Google diagnoses.

I knew it wasn’t a good idea, but the physio had been vague about which underlying disorder she suspected.

I couldn’t seem to stop myself from reading on and on about MS, bone cancer, and a rare immune disorder that eats away at your muscles and causes the kinds of symptoms I have, even though I know how unlikely any of those are.

Then again, I collect unlikely diseases.

I hold my breath and lift my chin so I don’t cry.

This stage, when you don’t know what’s wrong, is always overwhelming.

I’m Not Scared Of Death, But I Can’t Stop Asking This One Question

Jonathon Larson’s “Tik Tik Boom” has left me wondering.

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