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WORK TITLE: The Inward Empire: Mapping the Wilds of Mortality and Fatherhood
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PSEUDONYM(S):
BIRTHDATE:
WEBSITE:
CITY: Brighton
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COUNTRY: United Kingdom
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PERSONAL
Married; wife’s name Sarah; children: Leon (daughter).
ADDRESS
CAREER
Journalist and editor. Eurogamer website, features editor.
WRITINGS
Contributor of articles to publications, including Vice, Edge, and the New Statesman.
SIDELIGHTS
Christian Donlan is a journalist and editor. He has worked as a features editor on the Eurogamer website. Donlan has also written articles that have appeared in publications, including Vice, Edge, and the New Statesman.
In 2018, Donlan released his first book, a memoir called The Inward Empire: Mapping the Wilds of Mortality and Fatherhood. In this volume, he discusses being diagnosed with multiple sclerosis (MS) and dealing with the progression of the disease. In an article he wrote on the London Guardian Online, Donlan explained: “It is a disease in which the body’s own immune system decides to attack the fatty, insulating coating of the neurons in the brain and spinal cord. This coating, made of a substance called myelin, protects our nerve cells and speeds up those vital electrical pulses moving from one neuron to the next, kissing across synaptic gaps in a brisk burst of chemicals. Without myelin, crucial signals between the brain and the body become garbled or go missing entirely. The kisses go unmet, and over time you start to feel the consequences, in fingers, in toes, in glitch and twinge.” Donlan added: “At first, MS was like wearing an odd pair of spectacles. So it took a long time to realise that I was dealing with something not just wearying, but also potentially dehumanising. When I finally started to look around, I noticed the creeping symptoms of what is sometimes called cognitive decline, apparent in terms of memory, general awareness, and a diminished ability to navigate anything not straightforward.” In The Inward Empire, Donlan recalls making the difficult choice of how to go about treating his illness. In the same article in the London Guardian Online, he stated: “It is painful and comical to look back on the early days of MS. I was so desperate to feel that I understood what was happening, I created a new kind of logic. I became lost trying to understand my symptoms, perhaps amplifying them as I went. Treatments followed, including two stretches in hospital having a chemotherapy drug that sought to reset my immune system. Now, with the fourth anniversary of my diagnosis coming up, it appears to have done its work. … It has hopefully bought me more time without fresh symptoms.” In the book, Donlan also discusses his disease’s affect on his ability to parent his young daughter, Leon. He told Peter Stanford, contributor to the London Telegraph Online: “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.” Donlan added: “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.” Donlan also told Stanford: “When you have an illness … 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.”
A Kirkus Reviews critic noted: “In this poignant book, Donlan finds in curiosity, writing, and family the surest salves for the terror of chronic illness and mortality.” A reviewer in Publishers Weekly suggested: “Donlan never forces the parallels between his life and his daughter’s.” The same reviewer concluded: “This is a moving, gracefully written story.” Tony Miksanek, contributor to Booklist, described the volume as “an emotional and unlikely fusion of new fatherhood and life as a neurological patient.”
BIOCRIT
PERIODICALS
Booklist, June 1, 2018, Tony Miksanek, review of The Inward Empire: Mapping the Wilds of Mortality and Fatherhood, p. 23.
Kirkus Reviews, May 1, 2018, review of The Inward Empire.
New Statesman, April 6, 2018, “The Nurse Who Saved My Life,” article by author, p. 36.
Publishers Weekly, February 26, 2018, review of The Inward Empire, p. 77.
ONLINE
Eurogamer, https://www.eurogamer.net/ (September 10, 2018), author profile.
London Guardian Online, https://www.theguardian.com/ (April 3, 2018), article by author.
London Telegraph Online, https://www.telegraph.co.uk/ (April 1, 2018), Peter Stanford, author interview.
Penguin website, https://www.penguin.co.uk/ (September 10, 2018), author profile.
QUOTED: "it is a disease in which the body’s own immune system decides to attack the fatty, insulating coating of the neurons in the brain and spinal cord. This coating, made of a substance called myelin, protects our nerve cells and speeds up those vital electrical pulses moving from one neuron to the next, kissing across synaptic gaps in a brisk burst of chemicals. Without myelin, crucial signals between the brain and the body become garbled or go missing entirely. The kisses go unmet, and over time you start to feel the consequences, in fingers, in toes, in glitch and twinge."
"At first, MS was like wearing an odd pair of spectacles. So it took a long time to realise that I was dealing with something not just wearying, but also potentially dehumanising. When I finally started to look around, I noticed the creeping symptoms of what is sometimes called cognitive decline, apparent in terms of memory, general awareness, and a diminished ability to navigate anything not straightforward."
"It is painful and comical to look back on the early days of MS. I was so desperate to feel that I understood what was happening, I created a new kind of logic. I became lost trying to understand my symptoms, perhaps amplifying them as I went. Treatments followed, including two stretches in hospital having a chemotherapy drug that sought to reset my immune system. Now, with the fourth anniversary of my diagnosis coming up, it appears to have done its work. ... It has hopefully bought me more time without fresh symptoms."
‘A silent disaster unfolding’: my life with multiple sclerosis
Playing with my daughter, I noticed my fingers were numb. Then came the memory loss and clumsiness. I thought it was just age, but the doctor had bad news...
Christian Donlan
Sat 31 Mar 2018 03.00 EDT Last modified on Tue 3 Apr 2018 12.00 EDT
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Christian Donlan and his daughter Leon
One January morning in 2014, I lurched upright in bed at about 6am and announced: “I think I’m having a heart attack.” The main audience for this was my five-month-old daughter, Leon, sharing the bed with us, often sleeping sideways and leaving little snow angels in the sheets. Next to her was my wife Sarah, squashed up against the wooden bars of an open-sided cot we’d clamped on to the bed. Leon was not fazed. She sucked her thumb, waiting to see what happened next. Sarah, more used to my cheery opening remarks, propped herself up on her elbows and squinted.
“Pain in your arm?” she asked.
“No.”
“Pain in your chest?”
“No.”
She flopped on to her back and blinked. “What’s happening exactly?”
“My hands feel too tight,” I said, as I placed my palms together and squeezed. I steepled my fingers and then pushed them against each other.
Nothing looked particularly swollen, but the flesh was prickly and hot, as if my skin were suddenly being forced to accommodate much larger bones. “It’s like I’m toasted or vacuum-sealed or something.” I struggled for an adequate description. “My hands feel like Pop-Tarts.”
Sarah rolled over. “Doesn’t sound like a heart attack,” she said as she closed her eyes. “Sounds neurological. Much more likely to be multiple sclerosis or something.”
While Sarah slept, I went into the bathroom, taking Leon with me. Leaning her over one shoulder so I could feel her warm breath on my cheek, I pinched my fingers and felt pins and needles radiating outwards around my knuckles. My most reliable sense of identity has always resided in my hands. In my mind’s self-image I am still 16, stumbling and elbowy inside a flapping shirt and billowing cord flares. My hands, though, speak to the person I would like to be today: precise and gentle.
But this morning I did not recognise my hands. They were filled with strange electricity, dangerous and uncontrolled, as if a sparking cable were jolting itself around inside me. I looked at my wedding ring, which has worn a neat little groove. I tugged at it and eased it upwards. The groove didn’t seem to cut deeper, as I would have expected if my hands were as puffy as they felt.
Maybe I’ve slept funny, I thought, eyeing my daughter, who eyed me back. My worries about a heart attack faded. I explained away my tingling hands in a less alarming manner. “This isn’t illness,” I told Sarah. “It’s so much more awful than that. It’s old age.”
“It’s middle age,” laughed Sarah. “Doesn’t that sound worse?”
It wasn’t middle age. For a year or more before my hands started tingling, I missed a range of increasingly worrisome neurological symptoms. I developed a problem with door handles. I started reaching for them and missing. One door and then another, a clawed swipe through empty air. I assumed I would hit the target blind. And I would have to look and see I had not. It is a mildly amusing thing, to find yourself standing, hand extended and closed around nothing, while the door you’re trying to open just remains shut. I doubt I gave it much more thought when it first happened. Once I got the door open on my second attempt, I must have quickly filed the memory away alongside all other mildly amusing things, which is to say I forgot about it completely.
I didn’t see the patterns, the waves rippling outwards from that missed door handle, cresting gently over the other doors, light switches, kitchen cabinets and cashpoint keypads. For at least a year, I failed to spot a silent disaster unfolding, a fundamental shift as the entire world and everything in it moved two or three centimetres away from me – but only if I wasn’t looking.
I now realise that you have to work at being ill. To work at the interpretative side, the side that covers the whole muddling business of learning to live with illness. Self-involved as I have always been, I did not yet know how to reach inwards, to take a cognitive oddity and look for the wider patterns it might fit into.
***
The tingling in my hands did not go away, and it was joined after a few weeks by a blast of electrical energy down my spine whenever I bent my head. This sudden jolt – I now know it is called Lhermitte’s sign, and it indicates a lesion on the spinal cord – was the most violent sensation I had ever felt. It led me to the GP and from there to a neurologist, Dr Quill. After a series of tests including two MRI scans and a lumbar puncture, we met again in July 2014 to discuss his preliminary conclusions. Dr Quill waited until I was seated and then leaned forward on his chair, hands together in his lap. “You have an inflammation of the spine,” he said. “And we’re trying to work out why. Some people have inflammation in the spine and it just goes away.”
“And then there are the other people?” I asked.
Something inside me seemed to fall away. 'Multiple sclerosis,' I replied
“Some people have it because they have multiple sclerosis.”
Something inside me seemed to fall away. “Multiple sclerosis,” I replied. I sensed a question was expected of me, but I could not seem to form one.
“Yes.” Quill nodded. He peered at me. “Do you know what that is?”
“No,” I laughed eventually. “I have absolutely no idea.”
***
Now I know: it is a disease in which the body’s own immune system decides to attack the fatty, insulating coating of the neurons in the brain and spinal cord. This coating, made of a substance called myelin, protects our nerve cells and speeds up those vital electrical pulses moving from one neuron to the next, kissing across synaptic gaps in a brisk burst of chemicals. Without myelin, crucial signals between the brain and the body become garbled or go missing entirely. The kisses go unmet, and over time you start to feel the consequences, in fingers, in toes, in glitch and twinge.
I envision the lightning-fast movement of these signals through Leon, as she learns to put nouns and verbs together for the first time, while I sometimes stumble over the simplest sentences. At times it seems that we are joined, the two of us, through the magical substance of myelin, as it advances through my daughter’s brain and as it is attacked in my own.
Since the early days of her life, whenever the weekend came around, with Sarah still sleeping, Leon and I would get up together and head to the living room, where we would upend the Lego box. Toys she was far too young for and I was far too old for. Toys that were suddenly perfect for both of us. Our time with the living-room Lego feels idyllic when I look back on it now. Maybe it is suspiciously idyllic.
I have forgotten that, for many months, it was me doing all the building. I think Leon just snoozed at first, strapped into a bouncy chair. As time passed, she would be a warm weight in my lap while my arms reached around her for bricks. Over the next few years, Leon steadily became more involved. She slowly moved from watching to wanting to take part – and finally to leading.
And I started to notice the flickerings of her tentative nature as she reached for her first bricks and then tried to eat them. I noticed her easy smile but also her unpredictability, discovering that something that would make her laugh one day would make her sob with fury the next.
The Lego has been like that: a series of revelations for both of us. Simple blocks, and yet we use them to make endless tumbledown cities and bizarre, craggy mountain ranges that fragment into archipelagos of rubble. Our cities belong to some doodling realm that exists in the margins, beyond the concerns of form and function. I call this place the Inland Empire, a name I stole from the sand-blasted territory, outside Los Angeles, where I was born.
And there are two tales to this city. The first is Leon’s. The lurching advances in building complexity match the explosion in her cognitive abilities as one idea connects with another, as plans form, as capabilities are discovered.
Then there’s my story. For the first few months of our Saturday ritual, I now realise I was witnessing something happening inside me. My fingers were growing numb, my limbs getting heavier, I was becoming clumsier. And then, at night, I would sometimes lie back in bed and discover that my mind was suspiciously quiet. There was not a single thought strolling around inside my head. It was an ominous kind of calm.
Christian Donlan: 'MS can be life-shortening, but it is always life-altering.'
Photograph: Harry Borden for the Guardian
MS comes in a handful of forms. Relapsing-remitting MS is the most common, in which new or worsening symptoms flare up in sudden attacks, or relapses, that can last from days to a few months before retreating. Many people with relapsing-remitting MS go on to develop secondary-progressive MS, in which symptoms grow worse, with fewer periods of remission. In primary-progressive MS, the rarest and most aggressive form, symptoms grow steadily worse from the start. MS can affect almost every part of the body, causing anything from tingling fingers to full-blown paralysis, and in between you can get everything from incontinence to difficulty swallowing, from fatigue to – in my case at least – bursts of euphoria. It can be life-shortening, but it is always life-altering.
Two months after that conversation with Dr Quill, I was diagnosed with relapsing-remitting multiple sclerosis. No need for a second opinion, he said: it was a classic case. It was the same day Leon took her first steps – a juxtaposition so perfect, so trite, that I am generally too embarrassed to tell anybody about it. As Dr Quill talked me through the details, I was, of course, not really listening. I was leaning against Sarah, feeling the rise and fall of her breathing as she listened for us. We can handle this.
At first, MS was like wearing an odd pair of spectacles. So it took a long time to realise that I was dealing with something not just wearying, but also potentially dehumanising. When I finally started to look around, I noticed the creeping symptoms of what is sometimes called cognitive decline, apparent in terms of memory, general awareness, and a diminished ability to navigate anything not straightforward.
Several months after my hands started tingling, I was trying to put an Ikea bed together. With a bracing suddenness, I realised I had no idea what I was doing. For a few minutes I went back and forth between the various pieces of flat-pack around me until I finally admitted I could not get these pieces to converge in any way.
A pressure began to build in my head, starting with clogged ears and moving upwards until pain and annoyance prodded at my scalp from the inside. This was the hot pain of embarrassment and confusion, of exam papers that do not ask the right questions, of planes that have not waited for you on the runway when you have overslept. The paper, the images of the bed being put together: how did these instructions work? Why wouldn’t they speak to me any more? Which elements did I start with? I sloped into the living room, trailing defeat. Sarah had Leon snoozing on her lap. “I can’t do it,” I said. “Something’s wrong. I don’t know how to start.”
“You never know how to start,” said Sarah. “Nobody does. Sit down and it will all come back to you.”
I got the bed made on my second attempt – the confusion had lifted and I suddenly knew exactly what to do. But it seemed that the scuppering of the initial attempt to make the bed was not my traditional reaction to flat-pack furniture – it was not anyone’s traditional reaction to flat-pack furniture. No, there had been a new shallowness there, a new inability to focus.
My ability to deal with subtext was also diminished. In the evenings, or if I was particularly tired, I found I could no longer peer beneath the surface of what people were saying as easily as I had before. I was stuck in the literal. TV drama was freshly dense with additional value: everything that happened was a wonderful shock; I failed to see even the clumsiest of telegraphed twists.
When I forgot the word windowsill, I described it as the little pavement that lies next to the glass
I was also starting to lose the odd word. Parts of my vocabulary were flickering in and out of existence, as if my sentences were being fed through a cognitive hole punch. There were ways of coping. At work, as a video games journalist, I typed more and tried to speak less. Out with friends, I would settle on the periphery of a conversation, permanently exhausted. Only at home did I still try to make myself understood.
Even the simplest, most tangible of everyday things sometimes required elaborate workarounds. I described a shower head as a speaker that water comes out of. When I forgot the word windowsill, I described it as the little pavement that lies next to the glass. I would say that Leon’s funnel or beak needed cleaning when I meant her mouth.
At first it was liberating to be able to say, “I don’t know” and move on, and have the perfect excuse. MS, in the early days, when you take away the nerve pain, the buzzes, the pops, the intricate unfurling of a new symptom, seemed at its heart an agent of change and an excuse for coping with that change in any manner I wanted. But it was not liberating for ever. I sense now that the enjoyment I’d taken in forgetting is not the work of MS, neither is the speed at which I allowed myself to give up on trying to remember what I had forgotten.
***
It is painful and comical to look back on the early days of MS. I was so desperate to feel that I understood what was happening, I created a new kind of logic. I became lost trying to understand my symptoms, perhaps amplifying them as I went. Treatments followed, including two stretches in hospital having a chemotherapy drug that sought to reset my immune system. Now, with the fourth anniversary of my diagnosis coming up, it appears to have done its work. What does this mean? It has hopefully bought me more time without fresh symptoms, more time to settle back into life with Sarah, who has navigated the years with resilience, wit and a calm wisdom. And it has bought me more time with Leon, now four and a half and at school, learning to read and make friends.
I am still trying to make sense of those early years, though. I am trying not to distance myself from them, because I must live with the thought of MS hovering overhead at all times. Can you grieve for yourself? I asked myself one day. I was reading Joan Didion’s The Year Of Magical Thinking. Didion has MS, but this book focuses on the year after the sudden death of her husband, and in grief, she suggests, we experience strange things. Concentration is lost. Cognitive ability is reduced. Word blindness, blundering, forgetting. So was this grief in the mix? Can you grieve for yourself? I asked this, and heard the answer: yes.
• The Unmapped Mind by Christian Donlan is published by Viking at £14.99. To order a copy for £12.74, go to guardianbookshop.com or call 0330 333 6846.
QUOTED: "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 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."
"When you have an illness ... 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."
I worry about having MS for my daughter's sake
Save
Christian Donlan's biggest concern is that MS will somehow “limit” his daughter Leon's life
Christian Donlan's biggest concern is that MS will somehow “limit” his daughter Leon's life CREDIT: CHRISTIAN DONLAN
Peter Stanford
1 APRIL 2018 • 6:00AM
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"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.
Christian Donlan
Christian Donlan CREDIT: CHRISTOPHER PLEDGER
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.”
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.”
Christian Donlan was diagnosed with MS just months after the birth of his daughter, Leon
Christian Donlan was diagnosed with MS just months after the birth of his daughter, Leon CREDIT: CHRISTIAN DONLAN
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.”
The Unmapped Mind by Christian Donlan (Viking, £14.99) is out now. To order your copy for £12.99 plus p&p, call 0844 871 1514 or visit books.telegraph.co.uk
Chris Donlan is features editor for Eurogamer. His heroes include Eugene Jarvis, Errol Morris, and Linus Van Pelt.
Biography
Christian Donlan is an award-winning journalist whose work has appeared in the New Statesman, Edge magazine and Vice, amongst other places. He is a features editor at Eurogamer.net. He lives in Brighton with his family.
The nurse who saved my life
Christian Donlan
New Statesman. 147.5413 (Apr. 6, 2018): p36.
Copyright: COPYRIGHT 2018 New Statesman, Ltd.
http://www.newstatesman.com/
Full Text:
The sound my pump made that afternoon was not like the other sounds on the neurology ward. It was nothing like the jaunty ping of the obs machine, which measures vitals and plays the opening bars of the Magic Roundabout theme as it starts up. It was nothing like the distant lowing of phones on the front desk or the creak of porters wheeling beds over uneven linoleum. Around two, my pump suddenly produced an angry, insistent electronic bleating, the unmistakable voice of something going wrong.
Lemtrada is a chemotherapy drug that has proved useful in the treatment of multiple sclerosis. It kills lymphocytes, which have been described to me as the attack dogs of the immune system, roving around and savaging anything that looks suspicious. In multiple sclerosis, these lymphocytes find their way into the central nervous system, where they are not meant to be. Once there, they begin to shred the coating of the cells that make up the brain and spinal cord. By killing these lymphocytes off, and allowing new lymphocytes to replace them, Lemtrada is one of the most effective treatments people with relapsing-remitting MS have.
It is administered in hospital via an IV over the best part of a week. I came in for my first session in 2016, and for four days I sat beneath bags of Lemtrada as they trickled into me. The line of the IV passed through a pump that regulated its flow. On the fourth day the pump jammed, creating a bubble. Bubbles in a line, if they are of a suitable size, can enter a vein and cause air embolisms, and an air embolism might conceivably give you a stroke or a heart attack.
Out of nowhere, Annie appeared. Annie was one of a handful of nurses who worked the ward, doing the thousand different jobs that make up a nurse's day. Annie was brisk as she silenced the pump and removed the line. The bubble was huge. She located a valve near the point at which the line entered my wrist. "There. I'll get the bubble out there," she said. I think she also added that it would take a minute or two for the bubble to move into position.
Then--and I will never forget this--she rushed off and changed a bed. She tracked down an obs machine for another nurse, and she reminded someone on the front desk to take a break. She arrived back at the line and nodded to herself. Moments later she bent over the valve with a syringe and removed the bubble. Then she disappeared back into the ward.
I have told this story many times since, adding, as a coda, a conversation I had with my wife, Sarah, shortly afterwards. "Do you think she will ever think about what she did for me?" I asked. "I think she'll probably go home when her shift ends and never think about it again," Sarah replied.
This episode still leaves me in a state of moony wonder. But when I tell others, it strikes them as being ordinary. This kind of thing is what people expect of nurses. Of course they save lives. Of course they are competent and decisive. And of course they have too much work to do, yet they do it anyway. This is all part of the busy narrative around nursing, and it is part of the way, I suspect with considerable shame, that I have sometimes made peace with my apparent helplessness when confronted with the cruel short-sightedness of endless NHS cuts. These people are superheroes, aren't they? Surely, they will simply go on being superheroic for me. This might also explain why it's another story I sometimes tell about that week in hospital that has a greater impact, even though it's far less dramatic.
Lemtrada is administered through a cannula, a line that is placed in the vein and then stays put throughout the treatment. A needle and tube taped to the skin, a cannula is not a pleasant thing. Over time it can cause a dull pain in the flesh, and the site of the puncture may become itchy. I always feel compromised and vulnerable whenever I have one in. I never feel entirely human.
You must take your cannula everywhere. It's this that introduced me to Annie in the first place. On my second day on the ward I woke early and was determined to wash for the day ahead. Before I went into the shower, Annie explained, I would need the cannula covered so that it didn't get damaged. Actually, what Annie said to me was, "Let me just take care of this baby."
And she did. She swept off and returned with a plastic bag and some surgical tape. She smoothed the bag and bound it tightly around the cannula and then she explained that she always folded a little edge of the tape back on itself so that it would be easier for me to remove afterwards. Even though I was groggy after a night kept awake by the sounds of a neurology ward, I could tell that Annie's handiwork was special. That cannula covering was beautiful, bespoke and radiating the care that had gone into it. My humanity started to return a little.
It was a tiny detail, but I now see that a stay in hospital is made up of these insignificant kindnesses. It is that exuberant hourly piping of the obs machine. It is the oily film on a steadying hospital tea. And it is the many things nurses do to maintain the sense of calm and purpose on the ward. I knew nurses were lifesavers. What I didn't know was that they are capable and willing, in among the chaos of healthcare, of doing these vital, nameless jobs that make patients feel a little more like themselves. Jobs like arriving swiftly for an air embolism, say, but without broadcasting any obvious hurry. I realise now Annie's aim on my last day on the ward was not simply to avert an emergency but to soothe any sense of one.
A year later I was back as a day patient for my second dose of Lemtrada. I saw Annie as I was leaving one evening. I rushed to catch her in the corridor as if she were a celebrity. A new haircut, I noted. "It is so good to see you," I said. "I'm so happy to see you again." She smiled and pretended kindly to remember who I was. "You look different," she told me. "You look much better."
Christian Donlan is the author of "The Unmapped Mind: a Memoir of Neurology, Incurable Disease and Learning How to Live" (Viking)
Source Citation (MLA 8th Edition)
Donlan, Christian. "The nurse who saved my life." New Statesman, 6 Apr. 2018, p. 36. General OneFile, http://link.galegroup.com/apps/doc/A535816395/ITOF?u=schlager&sid=ITOF&xid=31411365. Accessed 13 Aug. 2018.
Gale Document Number: GALE|A535816395
QUOTED: "In this poignant book, Donlan finds in curiosity, writing, and family the surest salves for the terror of chronic illness and mortality."
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Print Marked Items
Donlan, Christian: THE INWARD
EMPIRE
Kirkus Reviews.
(May 1, 2018):
COPYRIGHT 2018 Kirkus Media LLC
http://www.kirkusreviews.com/
Full Text:
Donlan, Christian THE INWARD EMPIRE Little, Brown (Adult Nonfiction) $27.00 6, 26 ISBN: 978-0-
316-50936-7
A journalist debuts with an intimate account of his multiple sclerosis diagnosis and his growing awareness
of his roles as a young husband and a new father.
During the period covered here, Donlan, an American who lives in England, was writing about video
games, and he escorts us around that world before his first symptoms appear. Then we travel with him on
other journeys, medical and psychological. His chapters are mostly chronological, and following each is a
more general section dealing with the history of the disease, descriptions of key patients, and evolving
treatments. Donlan alternates between the changes in his own body and mind and those occurring in his
young daughter, Leon. As his symptoms intensify--and as he moves from treatment to treatment (there are
not a lot of options for him, we learn)--he also shows us the growth of Leon: standing, speaking, imagining,
playing, and discovering the wonders of eyeglasses. In these clear, honest pages, the author displays an
active curiosity about his illness and flexes some literary muscle, too. He memorized Matthew Arnold's
"Dover Beach" (the actual one is nearby) to entertain his mother, and he quotes from T.S. Eliot and Robert
Louis Stevenson, whose Dr. Jekyll and Mr. Hyde he finds especially relevant to his situation. (He mentions
a Hyde-like flare at his daughter that brings both of them to tears.) Donlan's wife emerges in these pages as
little shy of a saint. She seems to know what to say (and what not to) and what to do (and not do). The
author shows her as a wise, loving, compassionate companion. We also meet some of his medical team--and
fellow patients--especially in a section near the end about his weeklong hospitalization for a series of
infusions.
In this poignant book, Donlan finds in curiosity, writing, and family the surest salves for the terror of
chronic illness and mortality.
Source Citation (MLA 8th
Edition)
"Donlan, Christian: THE INWARD EMPIRE." Kirkus Reviews, 1 May 2018. General OneFile,
http://link.galegroup.com/apps/doc/A536570947/ITOF?u=schlager&sid=ITOF&xid=cc169baa.
Accessed 13 Aug. 2018.
Gale Document Number: GALE|A536570947
QUOTED: "Donlan never forces the parallels between his life and his daughter's."
"This is a moving, gracefully written story."
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The Inward Empire: Mapping the Wilds
of Mortality and Fatherhood
Publishers Weekly.
265.9 (Feb. 26, 2018): p77.
COPYRIGHT 2018 PWxyz, LLC
http://www.publishersweekly.com/
Full Text:
* The Inward Empire: Mapping the Wilds of Mortality and Fatherhood
Christian Donlan. Little, Brown, $27 (336p) ISBN 978-0-316-50936-7
In this earnest memoir, journalist and first-time author Donlan chronicles his efforts to "navigate the world"
as his life changes in his 30s after two almost simultaneous events: the birth of his daughter and his
diagnosis of multiple sclerosis. He combines careful and unsparing accounts of the "Inward Empire" of
experiencing MS--"a place that I am transported to when the truly weird stuff starts to happen"--with short
descriptions of MS, how it was first discovered in the 1860s as a "disease of cities and factories," and how it
is currently treated. As he recounts trying to reconcile the "opposing sensations" that his MS onset has on
his mental and emotional condition--"the fog of complete bewilderment, the toxic Zen of total
comprehension"--he also carefully notes his daughter's development over the first few years of her life, as a
"different person was emerging, outlined by her new abilities." But Donlan never forces the parallels
between his life and his daughter's; the way his family, friends, and doctors deal with his neurological
decline leads him to a greater understanding of his role as a person and a father: "to face death and
acknowledge its power, and to acknowledge the equal power of life." This is a moving, gracefully written
story. (June)
Source Citation (MLA 8th
Edition)
"The Inward Empire: Mapping the Wilds of Mortality and Fatherhood." Publishers Weekly, 26 Feb. 2018, p.
77. General OneFile, http://link.galegroup.com/apps/doc/A530637467/ITOF?
u=schlager&sid=ITOF&xid=f5dd5e2e. Accessed 13 Aug. 2018.
Gale Document Number: GALE|A530637467
QUOTED: "an emotional and unlikely fusion of new fatherhood and life as a neurological patient."
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The Inward Empire: Mapping the Wilds
of Mortality and Fatherhood
Tony Miksanek
Booklist.
114.19-20 (June 1, 2018): p23.
COPYRIGHT 2018 American Library Association
http://www.ala.org/aboutala/offices/publishing/booklist/
Full Text:
The Inward Empire: Mapping the Wilds of Mortality and Fatherhood. By Christian Donlan. July 2018.
336p. Little, Brown, $27 (9780316509367); e-book, $13.99 (9780316509350). 616.8.
"My daughter took her first steps on the day I was diagnosed." Thirtysomething Donlan recounts his
concurrent journeys through two realms--parenthood and patienthood--and unexpected synchronicities. He
finds both roles unpredictable, identity altering, and transformative. Constant worry is barely
counterbalanced by heightened hope for a safe, healthy future. His diagnosis is relapsing-remitting multiple
sclerosis (the most common type of MS). The initial symptoms include difficulty using door handles, a
pins-and-needles feeling in his fingers, and dropping things. Over time, speech becomes clumsy, fatigue
grows, and double vision occurs. He is informed that 10 different treatment options exist for his MS but
none are curative. Donlan chooses the safest medication but eventually receives the riskiest drug, which
must be administered intravenously in the hospital. Mentions and accounts of Phillip K. Dick, Iceland's
patron saint, Thorlak Thorhallsson, Oliver Sacks, Phineas Gage (who survived impalement by by an iron
rod through his brain), Imhotep, and physician Jean-Martin Charcot pop up in Donlan's illness memoir. An
emotional and unlikely fusion of new fatherhood and life as a neurological patient.--Tony Miksanek
Source Citation (MLA 8th
Edition)
Miksanek, Tony. "The Inward Empire: Mapping the Wilds of Mortality and Fatherhood." Booklist, 1 June
2018, p. 23. General OneFile, http://link.galegroup.com/apps/doc/A546287432/ITOF?
u=schlager&sid=ITOF&xid=243551d6. Accessed 13 Aug. 2018.
Gale Document Number: GALE|A546287432