‘Christopher’s decline began when he was a child. First he had trouble walking, then lost partial control of his arms. When I met him, he had already been in a wheelchair for several years. He most probably had a genetic condition, which is why he’d been sent to me. One thing I noticed was that he always wore cheeky T-shirts with provocative slogans and images – only later did we figure out that was his way of trying to tell us something.
I started extensive genetic testing, and shared my data with international doctors: like a detective, I set out to pinpoint the origin of his condition. To tell you the truth, I enjoyed the challenge. There’s nothing more satisfying than being sent a patient because no other doctor can figure out what’s wrong. But I never really appreciated how much his disease was affecting him, until one of the nurses in my team who had got to know him told us he was depressed – those T-shirt slogans turned out to be his way of reaching out to us. We contacted a psychiatrist and tried out different medications, but it very quickly became clear that his depression was a result of the life in which he had, in his own words, become trapped. There he was, a lonely guy in his late twenties, slowly growing weaker, and feeling immensely frustrated. It was his greatest wish to complete an art degree, but he was rooted to the spot. To be admitted he would need to complete a bridging programme, which was impossible, confined to the house as he was. There was only one thing that could break his isolation: he needed a car that he could drive himself, even with his physical limitations. But he had absolutely no idea how to go about it. One of the nurses saw his frustration, and refused to let it go. She started writing letters, reams of them, and eventually succeeded in getting him the car. It was hand-controlled and voice-activated, the showpiece of the car manufacturer. He immediately started his art course, was admitted to university, got first-class honours and went on to complete a master’s. Last year he launched his own start-up, and is now an established artist: he holds art shows and has even been invited to exhibit in the United States.
His work is absolutely astonishing. Despite being unable to use his hands, he creates beautiful art by gripping the pen between his arms. And his talent remained hidden all those years, trapped behind the barriers thrown up by his illness. It’s an incredible story, and a frightening prospect that it might never have happened. How many other patients are out there who, just like Christopher, have so much to give but never get the chance?
Now, thirteen years later, he’s nothing like the man he was when we first met. I see him every six months. Very slowly his condition is worsening, he needs ventilation at night, and is softly spoken because his vocal cords are affected. But from the first moment he went to university, his depression vanished. In the beginning he would still draw pictures of himself trapped behind bars, to express how he had felt all those years. But now the bars are gone, and his life has changed completely.
I still haven’t been able to isolate the genetic mutation that’s causing his condition. But now I realise that there’s so much more to patients’ lives than just the medical side. Nothing that us doctors ever did for this man revolutionised his life as much as that car did, and that fact really opened my mind. Sometimes patients need something other than just the right drugs or a successful diagnosis to turn their lives around. For Christopher, a car proved to be the best treatment.
I am humbled by his talent. Christopher showed me that while my detective work is certainly valuable, keeping a focus on the person behind the diagnosis is just as important.’