Wilson and I

| By Madeline Jay |

Nobody tells you much about starting university. They tell you to bring a mattress protector. They tell you about freshers' flu. They tell you – with a knowing smile, as though they are imparting ancient wisdom – that you should try everything. What they do not tell you is that one of the symptoms of a rare genetic neurological condition is a kind of reckless, euphoric inability to say no to anything; a loosening of every inhibition you've ever had; a grandiosity that makes ordinary caution feel like an insult. They do not tell you this because they do not know. And neither did I.

I spent my first year at university trying everything. However, ‘everything’ was not a new sport or a bad haircut. Everything was doing my laundry in a bucket, transporting a mysterious box across half the country on behalf of people I had never met, tattooing a police officer, and doing scabies treatment nine times across three counties.

I arrived at university on the 16th of September 2022 on a course of antibiotics for what I believed was tonsillitis. I was eighteen years old. I went out that first night, met people, had fun, tried to do it all normally. I was good at normal. I moved through school pretty easily - loved learning, made great friends, had hobbies and interests. I also got a note from my headteacher congratulating me on never missing a day of school for being ill.

What I did not know – what nobody yet knew – was that from the moment I was born, my body had been quietly accumulating copper in my brain, my liver, and my central nervous system. I did not even know such a thing was possible. I did not know that Wilson’s Disease existed. For the uninitiated, Wilson’s Disease is a rare genetic condition where the body cannot metabolise copper. Copper is, in small amounts, essential. In large amounts – the amounts that had been silently building in my body for nearly two decades – it is extraordinarily good at dismantling a person.

But I did not know any of that yet. So, I said yes to everything.

I said yes to Socialist Appeal. Specifically, to Michael and Jane, an elderly Marxist couple who taught me and a course mate about Trotsky, Lenin, and Marx from a comfortable sofa in their beautifully furnished apartment overlooking the river. I attended the meetings. I read the texts.

I went to marches. (I only said no after they asked us to pay twenty pounds a month for membership).

I said yes to doing my laundry in a bucket. Laundrettes required planning, commitment, and the sort of forward thinking I no longer had access to. Instead, I threw my clothes in a bucket of warm water and soap and stirred it for two hours. I wore the same trousers for an entire year until they were threadbare and unravelling. Makeup remover was an obstacle I preferred not to face. I stopped using it, letting the black eyeliner accumulate, layer by layer. Not unhygienic, rather ‘anti-consumerist’.

This became my philosophy. So I said yes to spending six pounds a week on food. I made a dough of flour and water. I ate couscous straight for three weeks. I was sincere and committed to something that in hindsight was just malnutrition.

I said yes to tattooing anyone who came into my room. With a little pot of ink and a set of needles I was unstoppable. First myself, then my flatmates, and a police officer who came into my halls one evening. She left with a little flower on her ankle; wonky, off-kilter, permanent.

The same room saw a committed open-door policy. I said yes to my flatmate urinating in my basin, coming in completely naked almost every day just to say hello. My flatmates plastered my room with porno mags the night I had a boy coming over. When I went out for the evening, I came back to my entire bedroom disassembled and remade in the hallway. Boundaries simply did not exist. It was amazing.

I said yes to the scabies treatment. My friend, the boy I was dating, and I all stripped down and applied permethrin cream together with the grim efficiency of a committed medical team. Then we did it again, and again. Repeating the routine in Bristol, Oxford, and London-washing our clothes, disinfecting our possessions, lying naked on sheets for hours on end. We did this nine times and never even had scabies once.

I said yes to the rave the day I came out of the hospital. Despite being old back in October to refrain from drinking alcohol due to elevated liver levels after a bout of glandular fever, I decided to go out, ignore the advice, and see what happened. I woke up unable to see or move my limbs. I went to the hospital. That evening, I went dancing to DJ Fingerblast and DJ Deep Heat. I was not going to say no to anything.

The symptoms continued in the background, like a tag scratching at the back of your neck you keep meaning to cut out but have somehow learned to ignore. Chronic insomnia so severe that sleep became theoretical. A progressive difficulty with critical thinking that I explained away as stress, not eating enough, or living away from home for the first time in a new city. Others were harder to explain. Whole-body tremors. Limbs freezing and unfreezing without warning. A complete inability to regulate my emotions. I filed all of this under that’s just what university is

like and kept going.

In hindsight, none of this was normal. However, and this is the part I keep coming back to – I was having the time of my life. In the strange, catastrophic way that only being eighteen with excess copper building in your brain can produce. I was, in every measurable sense, falling

apart, and it was one of the most vivid experiences of my life.

At the start of June 2023, the last day of my first year, I scheduled a routine blood test, almost as an afterthought. My ALT levels, a marker of liver function, which should have been within the healthy range of 0-44, had been elevated since October. Glandular fever with hepatic

implications they had said. That explained it.

The day after I got back home, my GP called me and asked me to sit down. My ALT levels were 296. I was to undergo immediate liver testing. I had stopped drinking eight months ago. I had shunned energy drinks, paracetamol, anything with an adverse effect on the liver. I had been, by the standards of most eighteen-year-olds, essentially a monk. A Marxist, tattooist monk who transported unidentified boxes and ran rampant around a city, but a monk nonetheless.

What followed was a month of eleven doctors’ appointments, three liver scans, countless ultrasounds, approximately forty analysed vials of blood, one twenty-four-hour urine collection and an eye test. It was the eye test that gave it away. It showed Kayser-Fleischer rings, copper

deposits in the cornea, visible under a slit-lamp. If that was happening in my eyes, just imagine what was happening inside my head.

On the 19th of July 2023 I was diagnosed with Wilson’s Disease.

Every illusion of normality was taken out back and shot. From the second I was born, my body had been doing this. Every strange symptom, every inexplicable episode, every moment of my first year that I had put down to that’s just what university is like was not a normal difficult time. I was dying. Not dramatically, not quickly – but slowly and steadily. Copper accruing in the soft tissue of my brain, spinal cord, and liver like dust settling on a shelf no one thought to wipe.

I was told that Wilson’s Disease, when caught late, ends in complete liver failure, schizophrenia-induced psychosis, and premature death. I learnt of a boy who passed away in the summer before his second year of university where he had been studying Philosophy. Aside from the boy part and the fact that I was doing Philosophy joint honours with English, it

was eerily similar. I was also told that I was one of the lucky ones. If I took nine pills every day, adopted a low copper diet and kept my sobriety, in two years the excess copper would be chelated from my system, and I would live a long and healthy life.

I returned to university for my second year in September 2023, sincere, hopeful and (slightly desperately) determined to be better. Eight days later I was in the hospital. I lay there on what should have been my first day of lectures, strapped to a heart monitor, with salt water injected

into my veins so that blood could be drawn, being examined by medical students who had an exam the next morning and needed to see a real patient before it. I lay there and thought this cannot be what surviving a disease looks like. This cannot be all there is.

A housemate asked me the next morning where I had been the night before. The expected answer was out, somewhere fun, I met someone. I could not give them that answer.

Three weeks later, on the 16th of October 2023, exactly one year since I first arrived, the university deemed me unfit to study. I went home. Before it starts working, penicillamine, the drug used to remove excess heavy metals from the body, causes paradoxical neurological deterioration. I could not read, could not speak properly, and spent three weeks walking in circles.

After I went home and started slowly to recover, I made a series of promises to myself. I had been told by a university that my brain was not fit for purpose, and I needed to prove to myself that was not true. That my mind – the thing I had always most relied on, the thing Wilson's had

fogged and fractured – was still mine. That year I read one hundred and sixteen books. I reapplied to a different university to study English Literature and got in. I started my life again.

Wilson’s Disease is, among other things, the reason I spent a year in the same threadbare trousers, only ate couscous for three weeks and carried urine samples through central London.

It is the reason I sat in the hospital at nineteen years old wanting the doctors to kill me right then and there.

But it is also the reason I am still here. The reason I now refuse to skip a single lecture. The reason I read over one hundred books in a year. The reason I no longer try to perform a version of myself that does not exist and never did. The reason I want to make something of myself – not to prove anything to anyone, but because almost losing your life, however slowly and quietly, has a way of clarifying what you truly want to do with it.

What no one tells you about surviving something is that you still have to live in the body that survived it. Despite the immense luck I had, you cannot unlive what you have lived, unexperience what you have experienced. I did not choose to be a Wilson's patient. I did not choose to be the only sober person I know, the one who has to scan every menu for high-copper foods, the one who has to explain to every new person they meet why they're not drinking, why there is a Tuesday afternoon blocked out in their calendar indefinitely for a hospital appointment they will have for the rest of their life.

In July 2024 I went to the UK Wilson’s Disease Support Group reunion. I had never met anyone else with Wilson’s. Due to the rarity of the disease, I had spent years being the only person in every room who lived like this. I walked in as the newest initiate into a group that no one wanted to be a part of. I heard stories of those who were not so lucky. People diagnosed

only because a sibling had already died from it. People with permanent neurological symptoms, too far gone to be reversible. Wilson’s Disease has no cure, and these were the people fighting for one.

I sat with the two other youngest patients, and we talked. Not about Wilson’s. Not about the suffering, or what we had lost, or what we had to give up. We talked about books. We talked about films and music. We were exhausted – the particular exhaustion of carrying, for years, an

experience that has no equivalent in the lives around you. For a single afternoon we did not have to explain ourselves to anyone. They already knew. They had also lived it.

It was the first time in two years I felt completely normal.

Now, some days I feel good, Wilson feels small, and I feel larger. Other days this is not the case. Recovery is never linear. Wilson and I remain in constant negotiation. He was here first, and he gets to stay. But this is still my life. And I intend to do quite a lot with it.