I'm 24 and my spine is slowly wearing away – with no cure in sight

It began as an ache in my neck. Seemingly overnight, the simple task of lying down had become a complex equation.

Pain spread like a weed in the space between my vertebrae.

Imagine crumpling a plastic bag in your hand – this was the sound I heard when I turned my head. There were also seismic shifts and violent clicks of bones that shook me from sleep in the middle of the night.

For the first few months, I told no one because there was simply too much at stake.

It had taken me years to become a full-time professional artist – I had monetised my childhood dream and built a business in my living room – and by December 2018 the commissions were rolling in like never before.

I was staining the white carpet of my home with black ink. Scraps of paper covered the couch and hung like ornaments from my flannel pyjamas as clients offered twice my listed rate to churn out last-minute gifts: wedding portraits, dogs, cats and babies.

I couldn’t say no to the money and so I worked non-stop, anticipating a sales drought and a much-needed break in the New Year.

The break never came. I carried on like this for another 12 months, marketing my art with intensity.

Social media became a key focus for me and I would post an original work of art every day at noon like clockwork. As I spent more time online, I became entranced by the likes, comments and messages that accompanied my growing popularity.

I skipped meals and cancelled plans to get everything done. I remember once being locked out of my apartment and crying inconsolably on the front lawn because my sketchbook was still inside on the kitchen table, and I might not finish the day’s drawing in time.

I managed to stay on top of it all – the commissions and invoices, the teaching and drawing and endless parade of emails marching up my phone screen. I became a highly visible success story.

I started a podcast, wrote books, taught workshops, and founded an arts organisation. I was building an empire.

And all the while, slowly, secretly, my spine was falling apart.

At first, I had blamed the ache in my neck on poor posture. I’d been hunching over my work for hours on end, so it was natural that I would need painkillers to get through the day.

As the pain intensified, so did the worry. I was haunted by visions of my spine disintegrating, my body collapsing like a tent with no poles. I went to the doctor and begged him for a test or referral, refusing to leave his office empty-handed. He ordered an X-ray.

I was browsing a rack of bikes when he called with the results.

‘This is very interesting,’ he said before relaying that I had a vertebral fusion: two of my spinal bones were touching and there was no disc in between them to absorb the shock of everyday movement. He explained that it was a birth defect that had lain dormant at the base of my neck for the first two decades of my life.

The doctor also diagnosed me with osteoporosis and osteoarthritis, both of which are progressive conditions.

The gradual deterioration of my spine would restrict blood flow to my hands, leaving them weak and numb. Cautiously, I asked what the prognosis was.

He told me that there was no cure.

There was no clear treatment plan either: neither surgery nor medication could repair the damage. Fractures were a real possibility, as was paralysis. Pain was a given. Only ibuprofen and physiotherapy could help me manage it.

I don’t remember how the phone call ended, only that after hanging up I walked over to the shopkeeper and told him I had just been diagnosed with a permanent, life-altering spinal condition.

He said nothing. What could he have said? I purchased a bike and rode it home and spent the afternoon sitting on the edge of the bathtub, examining the back of my neck in the mirror.

It’s been a year since my diagnosis and these days, I move differently through the world.

I weigh the risk of any given activity, from riding a bike to playing football in the park, and I watch from afar as my peers continue to live painlessly, fearlessly, recklessly – I too had expected to spend my twenties this way.

At 24, I feel as though I am already past my prime, closer in age to my parents than my peers. I go to bed before midnight. I take vitamins and do physiotherapy exercises on my living room floor. Occasionally, I prioritise fun over health but only after careful consideration.

The greatest change, though, has been to my work. I used to draw every day. Now I draw once a week using a special adaptive device that supports my arm and raises my work to eye level.

I receive the occasional commission through an illustration agency, plus royalties from book sales, artwork licenses, and downloads of my drawing course. But it never adds up to a full-time salary.

Clients are hesitant to commission me, whether out of concern for my health or their own deadlines.

Only a year ago I was in high demand, with more opportunities than time to take them on. Now my schedule is as empty as my email inbox.

The plan is to find a new way of making money as an artist. I know from experience that this is no small task.

My current projects include an album of original songs and a book proposal about my experience as a disabled artist.

I am shy about using the word ‘disabled’ because I know I look able-bodied, but I have come to accept this as an accurate description: there are things that I am simply unable to do.

When I meet new people, I am upfront about my condition and that paves the way for me to advocate for my needs.

Thankfully, I am still able to write. Using a different medium has shown me that my story was never really about drawing; it was about the process of creating something from nothing, of externalising my inner self and sharing it with the world.

When people ask me how I am coping, I can give no clear answer.

While I have fully accepted my current condition, I also know that there will be new things to accept as my spine deteriorates over the years. Even my best moments are marked with pain.

However, my worst moments have a beauty all their own. I feel both grief and gratitude for my health, and it is this tension that drives me to create.

I used to believe that art could mean only one thing but I have since expanded my definition.

No matter what I lose, I will always find a new way to express myself.

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