‘I was his doctor at the day care centre where I’d started working not long before: a boy of fifteen, with multiple severe disabilities. Intellectually he was functioning at the level of a two-year-old, had severe cerebral palsy and suffered epileptic seizures. But he was such a cheerful lad, with a hugely infectious laugh. Hearing it always put a smile on my face.
At a certain point he started losing weight. That’s not uncommon among children with severe spasms, because in a way, they are like elite athletes: their muscles are under constant physical strain and they need plenty of sustenance, especially if their bodies are still growing. We increased his caloric intake and he gained a little weight. Things seemed to improve, and I was happy.
Then one day he stopped laughing. He lost his cheerful demeanour, cried more often and showed other signs that something wasn’t right. Since he only knew a few words, he couldn’t tell us what the matter was. The entire medical team was called in: the behavioural expert, the speech therapist, the physiotherapist, all of us tried to work out what was going on. Was he over or under-stimulated? Had anything changed at home? Was he comfortable in his wheelchair? But nothing seemed out of the ordinary. I examined him physically and still came away empty-handed. But eventually somebody noticed that he was having incredible difficulty swallowing.
Ordinarily we swallow our food without a second thought, but what we don’t realise is that it takes more muscles to swallow than it does to walk. His spasms meant that it was taking him four or five attempts to swallow a single mouthful, and each meal was so exhausting that he needed time to recover afterwards. His entire day consisted of eating and resting, meaning he had no time or energy left to do the things he enjoyed. We spoke to his parents and decided to implant a feeding tube into his stomach. It proved to be the right choice: his mood improved, and he was soon back to his cheerful old self.
Six months later, I popped into the day care centre at the end of my shift, when a musical performance was underway. I surveyed the parents in the room and the children on the stage, all of whose special needs were so visible: wheelchairs galore, children having spasms and wearing safety helmets so they didn’t injure themselves. And there among them was that one boy, letting loose on his instrument.
Then one of the children came up to me. Doctor Marie-José, he said, surprised, what are you doing here? He looked around, his gaze settling on the stage, then asked: nobody here is sick, are they?
That was the moment when I realised: this is why I do what I do. That child’s concept of disease was so completely different: to him, being “sick” meant lying in bed and feeling miserable. But that boy on the stage, whose medical struggles had been ongoing for so long, was perfectly fine. His remark encapsulated so clearly what our job is all about. It’s different from being a regular doctor: we can’t cure intellectual disabilities, but we can try to relieve the symptoms they cause. Our objective is to work together to give this group of people the best possible life they can live.
It’s a long time ago now, I’d only just started out back then, but the memory of that afternoon has never left me. That infectious laugh resounding from the stage once more and that one comment made it all crystal clear to me: this is where my heart lies.’