My daughter took her first steps, then my world fell apart
On the same day in September 2014, Christian Donlan’s baby daughter took her first independent steps and he was diagnosed with multiple sclerosis.
that eventful day, to her parents’ delight, little Leontine (Leon for short), let go of a coffee table and, frowning with concentration, lurched forward across the room, arms as rigid as Frankenstein’s monster.
From that point on, Leon’s locomotion and motor skills would only get more assured, while her daddy’s would take exactly the opposite direction.
his fascinating, funny, occasionally joyful and often heart-rending memoir chronicles these two life journeys, made, sometimes literally, hand in hand.
For most of us, the adventure of first-neurologist time parenthood is quite enough without another life- changing experience to accompany it.
Looking back, Donlan can see that his early symptoms of MS began while his wife, Sarah, was pregnant.
It was the excitement of impending fatherhood that distracted him from the tingling in his fingers, the increasing clumsiness. ‘ As the due date approached, I fumbled through one day and the next, dropping things, spilling things, spiking myself on pen points and cutlery.’ When he thought about it at all, he put it down to anxiety about his unborn child.
Unequivocal diagnosis came as a relief. he’d started to think he might have a brain tumour. But then he had to tell his family. his mother was ‘ unreadably vague’, asking, in a tranquillised way, if MS was what Stephen hawking had. When Donlan explained the difference, ‘ that was enough for her: no questions, which I interpreted, foolishly, as disinterest, rather than swiftly pooling fright’.
Donlan, an award- winning journalist in his mid-30s, tackled his own fright by learning as much as he could about MS, of which his favourite description remains one of the very earliest, coined by a 19th-century French who summed it up as ‘marked enfeeblement’.
that was now his destiny. But he realised, in a way, he was lucky. After centuries of MS ravaging people, he was diagnosed during a period in which a burgeoning number of therapies had become available, even if none amounted to a cure.
the first verifiable MS sufferer, he found, was Augustus d’este, a grandson of King George III. In 1825, he had spots in front of his eyes, followed in 1826 by double vision. next came numbness, fatigue and impotence.
One doctor prescribed bleeding by leeches. Another suggested steak, twice a day, plus sherry. A third said there was nothing wrong with him. Augustus ended up in a rudimentary wheelchair, but never lost his good humour. he is Donlan’s hero. It is impossible to read this book without huge surges of sympathy, yet Donlan does not invite pity. Rather, this is an inspiring tale of a man trying to wrestle an incurable disease into a kind of submission, using intellect and logic and love.
he keeps studying it, perhaps so that he will have the same grip on MS as it has on him.
One morning, Leon alarms him with the cheerful news that her fingers are tingling. happily, it emerges that she’s been testing how long she can sit on her hands without hurting them.
All the same, it prompts him to tackle the most painful question of all: what are Leon’s chances of inheriting MS from him? In the UK, roughly one person in 600 is a sufferer, yet that increases to one in 67 for those who have a parent with the condition.
YET it is not a hereditary disease. Leon, like the rest of us, is far more likely to end up with dementia (one in 20 over the age of 65) or a form of cancer (one in three).
this ought to sound a depressing book, but somehow, it isn’t. If anything, here is a man counting his blessings, who finds that the joy of fatherhood not only comfortably trumps the blight of MS, but actually makes sense of it.
‘My daughter sends me out into the world just as my illness is starting to shut that world down,’ he writes, and concludes: ‘It is astonishing to see the extremes of illness MS can inflict, and astonishing to see how people make a life with the worst of it — and not just make a life, but reach out to help newcomers like me.’
When he is no longer a newcomer, that will be his legacy, too, in the form of this marvellous book.