Illness by perception

Somebody said to me: “I don’t need to come and see you yet, do I? It’s not like you’re on death’s door?”

You can see what they were getting at.

Despite a piece of paper with low-grade glioma written on it, and a dodgy looking white shadow on an MRI scan, I was otherwise a very fit, active and healthy 35-year-old.

I didn’t look like a cancer patient.

When I first announced my diagnosis to family and friends, I received a flow of love and emotion, support and sympathy that I will never forget. Cards, messages, flowers and financial contributions came in waves, felling us with their thought and generosity. More recently I have experienced a second cascading wave from hundreds of people I know from my work.

Six months from diagnosis, I feel I have nothing to show in exchange. No surgery scars to brandish, no walking stick to wave. I’m not bedridden or hooked up to a drip. There are no barren patches where my hair has fallen out.

The doctors told me to go away and live my life. They say I’m ill, but I feel like a fraud.

And yet, by degrees, I am reminded.

On Friday I had a seizure on my bike. Unlike previous attacks, I wasn’t pushing myself or sprinting across a line. It just happened. And then yesterday, it happened again. Every previous seizure has been the result of provocation. Has something changed?

It’s not just the seizures that remind me. Most days I wake with a mild headache above my right eye, and often with a metallic taste, an electronic tingling in the right of my jaw.

As of two weeks ago, I have a stomach ulcer. One caused, the A&E doctor presumed, by pressure building up in the skull. Perhaps another indication to an untrained medical eye that things might be getting more squashed up in there?

And then there are other things. Things that I’m not quite sure about.

The bean sized lump that appeared in my groin last week, and which has hung around ever since. The very slight brain delays I get – a buffering in my reactions – where my thoughts take a moment to catch up.

I might be stumbling over my speech more often than I used to, and I get words wrong when I read aloud to my children. Did I always bump into door frames as regularly as I have been lately?

This is illness by perception.

I probably always was as clumsy as this, I probably always was poor at reading aloud. That bump is surely just my lymph nodes doing exactly what they’re supposed to do, tackling my ulcer and a cold I’ve had over the last few days.

If you look for symptoms, you find them. Every stumble and bump becomes a signifier of something deeper.

But here’s the disturbing thing. Whether the delays and clumsiness, metallic taste and strange lumps are actually caused by my illness is irrelevant. It only matters that I think they might be.

I walked into my diagnosis meeting at Romford Hospital a healthy, fit, 35-year-old. I walked out in the same healthy body, but tragically sick to my core.

That’s what cancer and I suspect other systematic and terminal diseases like it does. It ebbs away your physical health, step by slow step. But it attacks your mental security, your sense of self, much quicker.

I no longer know what normal health is. Even if I have it, I wouldn’t recognise it. I have been blinded by knowing too much.

I may not be at death’s door yet, but I am on the driveway. I have left what Susan Sontag has called the citizenship of the well. Instead I belong permanently in the kingdom of the sick.


By the way, I think I might hate Christopher Hitchens.

On the long cycling miles since my diagnosis I have been working out great thoughts on a number of extremely interesting and hugely relevant issues to my current predicament.

I’ve been slowing roasting and basting these thoughts, hoping to cook them to perfection before presenting them with a flourish on these pages.

Then last night, in one sitting, I read Hitchens’ posthumously published essays on the theme of mortality.

There lay, already written in black and white, the very thoughts that had just taken me months of mental juggling and miles of tarmacked road to perfect. And far more articulately, concisely and beautifully expressed that I will ever be capable of.

If you read my thoughts over the coming months on the language of cancer, on people offering to pray for me, on alternative medicine or on beseeches to circumvent the world looking for the cure, I assure you there is no plagiarism involved. He was just quicker on the draw.

I think I do hate Christopher Hitchens. And I must, immediately and with urgency, read each and every word he ever wrote.

Leave a Reply

Your email address will not be published. Required fields are marked *