"My left hand is not great in terms of tingling. And my right comes in and out. The other day, one side of this finger was numb.” Sitting across the table in a café in his home town of Brighton, Christian Donlan is mapping out the daily impact on his body of being diagnosed with multiple sclerosis three and a half years ago.
“I have a thing called ‘the hug’. It is the worst hug in the world.” The award-winning journalist wraps his arms tightly round his trunk to demonstrate the effect of being crushed.
“People call it girdling, which is a lot more accurate and gets at how unpleasant it is. It woke me up this morning. Then there are the cognitive things. Some days, I really struggle to speak fluently. Words come and go – generally, in the evenings.”
There is no lack of fluency in 39-year-old Donlan’s thoughtful and quietly moving new memoir, The Unmapped Mind.
In it, he focusses not so much on the changes MS has wrought to his body, but rather on how being diagnosed with the incurable and degenerative neurological disease brought havoc to his emotional and psychological landscape, especially since it came just 12 months after the birth of his daughter, Leontine.
When you have an illness you can't escape from, it can bring your personality flaws to the surface
“Primarily, the book is about the moment in your life when you are told something is changing, when everything is up in the air. With Leon, and with an illness.”
The connection may seem obvious, but Donlan teases it out in intriguing and raw ways. “The only way Leon and MS are alike is that they are relationships I remake every day. Every time Leon [now four and a half] wakes up, I still think: ‘You are so different from how you were last night.’ And it is the same with MS.”
His first symptoms started when Leon was just a few months old. Donlan and his wife, Sarah, a nurse, had moved house, and he noticed that he was missing light switches and door handles when he reached for them. Problems with proprioception – knowing precisely where your limbs are, and what they are doing – can be a warning sign of MS.
At first he dismissed the symptoms but, after a visit to his GP saw him referred to a neurologist, diagnosis came in September 2014. His reaction to the news, he recalls, was anything but straightforward. He retreated from the practicalities of what MS could mean for his life, and buried himself instead in an exhaustive trawl through theories about the still imperfectly understood landscape of the brain.
“When you look at the long list of the things MS does, you don’t know how much of it will turn up. Ever. And I struggled with that. I still struggle with it.”
By way of an example, he quotes an episode from his childhood, which, he clarifies, was happy, although his American, ex-Catholic monk now social-worker father and his part-French mother divorced when he was young.
“When I was 14, I had a bicycle accident, and I had to have 150 stitches on my face, and four hours surgery. For weeks afterwards, I wouldn’t look in the mirror because I was so scared of what I’d see. Over time, not looking at my face became unbearable, because I was thinking about it all the time. So what I did was look at a little bit at a time. And it was alright, but it took time. I couldn’t do it all in day one.”
What is multiple sclerosis (MS)?
Along with 85 per cent of those with MS in the UK, Donlan has the remitting/relapsing form, where its symptoms typically come and go. “When someone asks you tell me about your symptoms, you sound like someone standing complaining at the bus stop,” he says. “But my legs are a problem. It’s like putting on a pair of waders. I can’t walk long distances. I still get around, but when I go into town with Leon now, I know where all the benches are. I sit down a lot.”
He makes it sound the most natural thing in the world. Donlan is not a complainer. He prefers the “why not me?” reaction to diagnosis to the more instinctive “why me?”
“Talking to the MS Society about things, I already knew I was lucky, but I didn’t realise how lucky. The NHS [which spends £250 million in England on MS provision] has been gratuitously generous to me, but I have learnt from others that access to treatment varies from one place to the next. There are people with MS, for example, who haven’t seen a neurologist or an MS nurse in a year, which is really shocking.”
Last year, his local health authority funded the drug Lemtrada for him. In some parts of the country, others won’t. “I was having a lot of relapses,” he remembers, “and everything was going very fast. I was getting the sense that MS was moving too quickly towards somewhere I didn’t want to go.”
It has involved spells in hospital, away from his family, but it has been worth it, he says. “It has slowed everything down. I still have the same symptoms, but no new ones – at the moment.”
Does he worry about how his MS may impact on Leon as she grows up? “Yes, lots,” he replies, without his usual pause to turn the question over. “My brother [he is the middle child of five] had a brain tumour when I was 16, and that had a big effect on all of us. So I worry about what it is going to be for her, living around this.”
His biggest concern is that MS will somehow “limit” his daughter’s life. There is no sign of that, I point out. When we finish talking he is off to parent-teacher evening at her school, like all the other mums and dads. With every mention of her name, he reveals just how loved she is.
“When you have an illness,” he explains, “you can’t escape from yourself in how you react to it. It can bring your personality flaws to the surface, and it does with me. There are times when I am grumpy about things. Leon shouldn’t have to deal with that.”
Either he is doing a very good impression – in person and on the page – of being a very un-grumpy person, or he is managing that side of himself very well. Donlan shrugs off the compliment. “This disease is about living with the knowledge that something might happen. What I have realised is that all you have to do most of the time is tell yourself that you are doing that.”
When someone asks about your symptoms, you sound like someone complaining at the bus stop
And not worry about what lies ahead? “I’m less afraid,” he concedes, “but I am still a little bit afraid.”
He stops to doublecheck what he has just said. “Yes, I think that is true. I’m afraid of the things I haven’t even considered.
“Maybe in the first few years, you survive by thinking, maybe the things that I know about MS won’t happen in my case. And when the next new symptom happens, there will still be that sense of panic. Where does this stop this time?”
He is still smiling, as he articulates his deepest fears. “The one thing I’m not afraid of admitting,” he says, when I point it out, “is that I am afraid.”