Dating is hard. It’s paved with heartache and unrequited crushes and the blurting out of gabbled nonsense in front of the unimpressed person you like. When I finally found myself in a conversation with someone I liked at work, whose head I had resolutely stared at the back of for a full three months, I answered an innocuous, “So, how’s your day going?” with, “I am awash with existential despair.” She stared, confused and unblinking, back into my face. I then followed it up with a tiny, pathetic, “Woo!” She sat down again. I continued to stare at the back of her head from my desk, in the full knowledge that she would never speak to me again. This isn’t just me, right? This is how it is for everyone. This is what it’s like to date. It’s awkward.
But what is it like when, in addition to your inability to say anything remotely funny or interesting to the person you are into, you have a mental health problem as well? How does that affect the way you interact with them? How does it affect a relationship once you are actually in one? And, more pressingly: how do you even tell someone you are, or have been, ill? At what point during the dating process is it appropriate to bring up mental health?
The pressure of not knowing when or how to reveal your mental health status can be an additional and very valid source of anxiety. If you tell them too soon it can feel like you are setting the stakes too high; but if you leave it too long you might find that the person you are dating has offensive views on mental health, doesn’t want to deal with it or just isn’t equipped to handle it at all.
As a serial dater it’s something I’ve contended with a lot. It’s also something I’ve done badly a lot. You would have thought there was a finite number of ways to do this wrong. There is not.
How not to tell someone you are mentally ill
Let’s start with some of the poor ways I’ve handled this so far.
Avoiding telling someone until it was catastrophically too late
Hey! I thought, after a month or two of relative tranquility. I think maybe I don’t have mental health problems any more! I think maybe things are going to be perfect for ever and I’m never going to have to think about this ever again. There’s absolutely no point telling my new boyfriend about it, is there? Nah. It’ll be fine. I’ll be fine. I’m fine.
It was not fine.
At that point I was deeply embarrassed bymy previous psychotic episode, and tried to distance myself from it as much as possible. It was easier for me to avoid the topic and skirt around it awkwardly than to confront it. I chose to blame my breakdown on the stress of starting university, moving away from home, and spending all my time drinking. I didn’t want to think about the possibility that it might continue to affect me for the rest of my life.
But eventually my boyfriend and I did end up talking about self-harm and suicide. It was two years into the relationship and we were in the pub. “It’s all just attention seeking, isn’t it?” he said. “It’s just people who want to feel special: ‘Oooh, look at me, I’m on antidepressants!’ Just get on with it.” He went on to tell me about an ex-girlfriend who had gone on antidepressants after her dad had died unexpectedly; he complained that she lay in bed all day and wouldn’t have sex with him no matter how much he bugged her. It was brutal to hear him write off what was clearly a traumatic experience for his ex as her being “lazy” and trying to “avoid sex” – as if her depression wasn’t about her at all, but was a punishment she had decided to enact upon him. After two dates, this would have been fine – I’d have just dumped him. After two months, even, I could have escaped from the relationship pretty much unscathed. After two years, though, it came as a horrifying blow, one that precipitated the end of the relationship. It forced me to consider how well I really was, and how integral my psychosis, my depression and my mania all were, in their own ways, to my self-image.
We argued about it a lot that day and from then on. He blamed me and said that he wished I would kill myself already and just get it over with if I was so serious about it. There’s no doubt that he was a dickhead about the whole thing, but I can’t help feeling that if I had talked about my experiences earlier in the relationship it might have been avoided.
Rule No 1: it is definitely a good idea to actually, at some point, tell them.
Don’t do it! There is a time and a place for everything. Photograph: Jupiterimages/Getty Images
Blurting it out on a first date
I was on a genuinely brilliant first date. He was tall, good-looking (in a kind of dishevelled professor way) and the first person I had met who had piqued my interest since the breakdown of my previous relationship. I was very invested in not messing it up.
And I was nailing it. There was lots of wine and I was pulling out all of my best anecdotes. Then came this exchange:
Him: “So, you know I have a son?”
Me: “Oh. No. I didn’t, actually.”
Him: “Yeah. He’s 10.”
Me: “Don’t worry about it. I have bipolar.”
Not only had I completely failed to acknowledge anything he had just said, but I had also equated his beloved child with a debilitating and heavily stigmatised mental health problem. I felt like his child and my bipolar were both things that could and would put someone off, and that he had somehow just issued a dealbreaker amnesty by mentioning his son. In fact, he had just wanted to tell me a boring anecdote about a trip to the zoo.
Rule No 2: don’t compare someone’s child to a mental health problem on your first date.
Telling someone during sex
Things you can say during sex: “That feels amazing”, “Keep doing that”, “Could you stop leaning on my hair please?” We’ve all read Fifty Shades of Grey. We know what’s allowed.
But things you should not say during sex? “So, you know I have bipolar?” Don’t ask me why this happened. Don’t ask me about the chain of thought that led me to blurt it out like that.
Just remember rule No 3: never say it when you are literally having sex with someone. Never.
How to tell someone you’re mentally ill in none of the ways outlined above
I would love to be able to say, “Yeah, you should definitely say X after Y number of dates”, but relationships don’t work like a PlayStation cheat code, much as I wish they did. You have to play it by ear, pick up on the person’s vibe and try to work out how best to communicate it to them. I can give you some tips, though.
Actually tell them
Yes, this is obvious, but it’s important. Even if they are the understanding type, it’s best to tell them before you have an episode, because you will need to have a conversation about what you expect from them or what you might need. If they don’t want to date you because they can’t handle it, that’s fine, but it’s unfair on both of you if they are forced to make that decision while you are ill and will cause undue levels of stress when you really don’t need them. It may cheer you to know that a 2013 study undertaken by the charities Mind and Relate found that 77% of people with mental health problems actively told their partners about their mental health problems and just 5% experienced a breakup because of it. A further 74% of partners of someone with a mental health problem said they “weren’t fazed”. So you have almost nothing to worry about.
An honest approach is best Photograph: Hinterhaus Productions/Getty Images
Be honest
You don’t have to tell them all the gross minutiae, but it’s best to be broadly honest. Detail the type and severity of your illness. Tell them how it has affected you in the past and how it is likely to affect your relationship.
Don’t sugarcoat it.
For me, there are two major things that tend to go as soon as I become depressed: being able to leave the house, and being able to take a shower. These are obviously fairly big hurdles in a relationship – having a girlfriend who smells like a bin and who sits in the same spot on the sofa for three weeks may not be the most appealing prospect. But by talking about it – telling someone how best to coax me into leaving the house, how to encourage me to look after myself, how I might respond – I’ve found that these hurdles are far less daunting than they first seemed.
Offer some advice
You’re an expert on your own condition, but your partner might not be: help them out.
Encourage them to research your diagnosis so they know, roughly, what they are dealing with. Tell them what you might need and when, or how they might be able to spot warning signs. As with many people who suffer from mania in some form, the first symptom for me is a complete inability to sleep combined with a desperate compulsion to talk all of the time. Telling someone that those things are meaningful parts of my illness, rather than just random occurrences, means that they’re much better equipped to recognise and deal with them when they occur.
You should also, as a couple, draw up a contingency plan in case of emergency. Which family member or friend should your partner contact in a crisis? What resources do you need? This could be anything from bubble bath, music, books or puzzles to calm you down, to something more serious – do you have spare medication, for example? Make sure you are clear in advance about what actions you are happy to explicitly consent to – it’s important that your partner knows what you are comfortable with. And draw up a list of contacts – local authorities, your psychiatrist or doctor, your support worker, or whoever might be able to help.
Don’t be too hard on yourself
Having someone decide not to date you because they can’t cope with your mental illness sucks. It feels deeply horrible and personal. Talking to a newly single friend recently, she told me that several relationships that seemed to be going well had mysteriously withered away as soon as she mentioned her severe clinical anxiety. Some told her that was the case – that they were unable or unwilling to deal with it – and others mysteriously disappeared as soon as she mentioned it. It, understandably, bummed her out.
There is a silver lining, though: it is far better to be with someone who is willing and able to help you with your illness. Having a mental health problem obviously doesn’t define you, and it’s the same with relationships. But knowing that someone has chosen to stick with you on the bad days as well as the good can significantly reduce anxiety.
•This is an edited extract from Emily Reynolds’s A Beginner’s Guide to Losing Your Mind (Yellow Kite, £14.99). To order a copy for £12.74 go to bookshop.theguardian.com or call 0330 333 6846. Free UK p&p over £10, online orders only. Phone orders min p&p of £1.99
Chibundu Onuzo seems to think that it was appropriate for a nurse to ask patients, on their way to surgery, if she could pray with them (I’m invisible – I am a Christian, 13 December). I put the question to my elderly friends. The majority said that it would terrify them at a particularly vulnerable time as they would assume that the nurse expected them to die. Some said they would be angry at such an inappropriate question in a hospital. One commented that he had previously been approached by a hospital chaplain and, far from being comforted, was shocked that the NHS was paying the chaplain’s wages when it had had cut nursing staff.
To inflict your own beliefs on someone who cannot get away from you and at such a tense time is unprofessional in the extreme. Everyone is entitled to practise their own belief in their private life, but forcing it on others in the work environment is simply wrong. Dorothy Smith Welwyn Garden City
• The Darent Valley hospital board will waste a lot of NHS money on lawyers’ fees by sacking a good nurse, Sarah Kuteh, in a cruel manner. All she did was to ask patients if they would like prayer support. She was not thrusting her Christian views on them. Perhaps the hospital chaplain team could act as advocates between the board and Sarah before this escalates into an unnecessary expensive and wasteful court case. How about doing this before Christmas? Eddie James Rillington, North Yorkshire
To inflict your own beliefs on someone who cannot get away from you and at such a tense time is unprofessional
• It is sad that Sarah Kuteh lost her job after offering to pray with patients. Generally I feel that, as with politics, religion should be avoided in the workplace. Someone is going to be offended or feel excluded, so best not. If hospital admission forms still list religion, patients could then be informed what services are available, hospital chaplain etc.
Going into surgery affects people in different ways – pre-meds make me sleepy and I prefer to be left alone – but if someone needs prayer before then, best to discuss that at time of admission. Val Cook Radcliffe-on-Trent, Nottinghamshire
• Chibundu Onuzo complains of invisibility. How strange! For consider. There is a church in every village and district – often several. There are bishops in the House of Lords. There are church schools round every corner – with more to come. There are prayers in parliament and council meetings. There is the priority that schools give to religious perspectives on morals and belief; perspectives to which most of us are now indifferent or hostile. And then there is Thought for the Day – still closed to non-religious voices.
It’s an odd kind of invisibility that is quite so visible. And an odd kind of believer who feels that it’s not enough. David Flint Vice-chair, North London Humanist Group
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In the summer of my 44th year, when everyone did the ice bucket challenge for ALS, when friends and strangers and celebrities soaked themselves with iced water to “raise awareness” on my Facebook feed, I did not participate. I took note of these social media affirmations with some interest, but I was never tagged by my friends to participate in the awareness raising. I thought about doing the ice bucket challenge on my own, but I got caught up in the specific detail of whether a middle-aged man should have his shirt on or off during an internet display of virtue. And so nothing happened.
Some time after that, in the autumn, I began to notice a certain hitch in my left leg when I walked or stood for too long. The knee would give out periodically, as if I had forgotten to attend to the basic task of keeping it straight. My leg was otherwise normal, it was strong, it didn’t hurt. I’m a doctor and so I looked at it. It looked fine. At the time my toddler son demanded to be carried up the stairs and everywhere, and I was riding my bike to work every day. Maybe, I thought, I was extending myself too far. Maybe I had reached my fabled turning point. A month or so after that, I started to have some numbness and an ache in my left arm and a feeling of clumsiness in that hand. Probably a pinched nerve, I thought, and did what most doctors do for medical problems, which is to take some ibuprofen. Soon after that, while I was giving a lecture to medical students one morning, the microphone slipped from my hand and fell to the ground. Medically speaking, dropping things is a big deal. I realised that something was happening, something troubling that I couldn’t ignore any more.
You never plan for a serious medical problem in your life, it intrudes, testing the boundaries of your constructed reality. Things had been going well enough for me. I was married with two young children and I liked the work I was doing. If I was stressed and sleepless and maybe a bit overwhelmed by new fatherhood, it was still a very happy time. I was working in an academic emergency department and teaching a course to medical students about the soft skills of being a doctor: how to talk to patients, how to understand their experience, how to make sick people feel better. It had occurred to me that to be a healthy person teaching students about illness might be a provocation of fate.
I ended up in a neurologist’s office the next week sitting on an examination table in a hospital gown. Dr K came in and introduced herself. She had been recommended by a mutual colleague as someone who was clinically sound but also “just gets it”. This much was immediately clear; she was warm and attentive and present. I felt self-conscious and exposed in the gown, powerless, vulnerable, all those things I teach medical students, but at least I was taking mental notes for my course. It is hard to be a patient, I had told them, yet this fact is famously hidden from the daily experience of the medical professional. When the tables are turned, you discover how unequal the relationship is, how completely dependent you are on another individual’s goodwill. Check. But being a doctor-patient involves making a preliminary choice: should you reveal that you’re a doctor? I typically do not, at least not at first. I want to get a measure of my physician when they’re not on their best behaviour. I also know from practising medicine that anything that makes the doctor self-conscious or trips up their routine can affect their judgment and decision-making. The physician might, in their awkwardness or self-regard, take a shortcut or over-think the problem at hand.
Related: How the ice bucket challenge led to an ALS research breakthrough
That said, sitting across from her I realised that I was worried. Suddenly I clung to whatever advantage I could: “I’m a doctor!” I blurted. As I told her my symptoms, the numbness and weakness that I had, the clumsiness and dropped microphone, I watched her expression carefully. She nodded and said it could be a disc, just as I had suspected. “But as you know,” she said, “any space-occupying lesion in the spine or brain can also cause these symptoms.” This was a way of saying “tumour” without using the word. I nodded, mentally picturing a tumour in my spine. “And we also have to consider things like MS. Or ALS,” she said, and then she looked away for a moment before glancing back to register my reaction, which was a welling sense of foreboding, of tumbling, of skidding down an embankment. “OK, yes,” I said pleasantly, “I hadn’t thought about that one.” Her office scheduled an MRI for me later in the week.
The abstraction – the intellectual understanding of disease – is a position of relative safety. The very real concern for one’s own existential continuity is a different situation entirely; it is real, it is physical and, in my case, felt in the throat and chest.
Our occupational disability as doctors is the awareness of the unlimited ways in which things can go wrong in the body and how lives can be ruined in a moment. We study disease in medical school and manage most of the time to keep the knowledge at a distance. But when it’s our turn to be ill, our medical training can be a kind of inconvenient asset. Combined with a proclivity to connect the dots, the resulting suspicions can keep you up at night. It’s common for medical students to experience spasms of hypochondria during their training. This hypochondria is a kind of paranoia, a tendency to see patterns when they don’t exist. But I had never been a hypochondriac. And here was an experienced neurologist, a certifiable objective opinion telling me that there was something here.
The next few weeks were hard. I waited nervously for my MRI and more than once invoked my doctor’s privilege: to skip the waiting list and get my results right away, to get a copy of the studies burned on a disk before I left the radiology suite, to text my neurologist on her personal cellphone for the final readings. I was working in the emergency department the evening after my MRI, seeing patients with the desperate complicity of a dying man tending to other dying men. Intermittently I would look up the dismal survival statistics of various spinal and intracranial tumours and then go back to my sad work.
When Dr K’s personal cell number flashed on my phone, I excused myself from patient care mid-sentence and walked out to the waiting room where I could get better reception. She had looked over the studies and spoken with the radiologist. Everything was normal. I did a fist pump as patients in the waiting room looked on. It was the elation of the near-death experience, of return to life! I came back to the ER with good cheer, full of hope for my patients as well, and that night I went to dinner with friends and slapped everyone on the back like I had won the lottery. When I saw my neurologist in her office the next week for the victory lap celebration she said, “Well, I guess we should get that EMG now.” Oh right. The MRI had only ruled out a tumour. I had forgotten about ALS.
An EMG or electromyogram is a specialised test used to diagnose motor neuron diseases such as ALS. But why did she suggest it the way she did? Was the initial concern about tumours just a feint where ALS had been her real concern all along? What was she really thinking? The full force of my analytic mind was employed in the service of generating worry, but not for want of evidence.
I was working in the emergency department, seeing patients with the complicity of a dying man tending to other dying men
ALS – amyotrophic lateral sclerosis, more commonly known in the UK as motor neurone disease – has been thrown into the spotlight because of the highly successful ice bucket challenge, but for many years it was known in the US as Lou Gehrig’s disease in memory of the New York Yankee first baseman whose career was marked by record-breaking endurance. He played over 2,000 games in a row without a day off until the middle of the 1938 season when he began to tire and lose his coordination, no longer hitting with any power, sometimes falling down when circling the bases. He was diagnosed at the Mayo Clinic at the age of 36 and he died less than two years later. Charles Mingus also died of ALS, as did Dmitri Shostakovich. A few years ago the historian Tony Judt died after a brave and stoic fight. I had wondered to myself at the time if I could be as brave as Judt. Probably not, I had concluded. But was it courage? Or some particular relationship to life, of being so enmeshed in it and caring so much about it that each remaining moment was a gift? Judt had his writing to finish. And I? Nothing quite so grand, but I had my family and two kids to raise. Suddenly I became aware my lack of any grand plan, my aimless floating through life.
In time, ALS destroys the neurons controlling muscle movement, leading to complete loss of strength and the ability to control one’s limbs and trunk and face, and finally the muscles of breathing. The cause is unknown, there no cure, there is no decent treatment and it is fatal within a few years – often much sooner. Perhaps most awful is that as victims are progressively disabled, unable to speak or swallow or move, their cognition is maintained. They must endure the burden of progressive disability and then the dying process as mute witnesses, without the grace of dementia that marks most other deaths. The affliction forces an existential confrontation for which nobody can be prepared. In any hierarchy of terrible diseases, ALS ranks near the very top.
Dr K referred me to see Dr M, an ALS specialist at Beth Israel hospital who would do the needle EMG, which, as it turns out, is an uncomfortable test. But first Olga, the Russian technician, did a nerve conduction study. She put electrodes on my skin near major nerves to test the speed at which they conveyed impulses. My muscles twitched rhythmically without my consent and I glanced at the computer screen that was running something like a seismograph. I had no idea whether what it showed was good or bad. Olga chattered good-humouredly about her husband and grandchildren in Brighton Beach as I fidgeted in pain. When she was done, she left and told me to wait there for the doctor.
Related: American doctors are over-reliant on medical tests and patients pay the price | Kenneth Ludmerer
I didn’t even bother to sit up. I lay on the table and stared at the ceiling until the smiling Dr M entered. An Irishman with a strong brogue and a warm and disarming manner, he put his hand on my shoulder and made a comment about my choice of underwear before cutting to the medical interview. Not exactly textbook, but I liked him. I explained my worries about ALS and told him why Dr K had sent me and he seemed unimpressed. “You’re not that interesting,” he said to me. His dismissiveness was reassuring, but then I imagined this was part of his routine to put me at ease. As my brain careened between extremes of fate, Dr M and I talked politics and he started to put small needles into my leg.
He drew blood but did the examination without gloves, a gesture that in my shaky state I found vaguely consoling. I suppose that with my mortality nakedly exposed, this small intimacy felt like a comfort, an encounter without barriers. Later I would see him from the waiting room giving a long hug to a patient. He must have done this many times, breaking the news to someone about their fate. He finished the procedure and with a deep breath, absent-mindedly swabbed the small areas of bleeding on my skin and told me to meet him in his office. He stood abruptly and left. I found some plasters in the drawer and put them on the puncture points that were still oozing blood. I felt that everything in my life up to now had led to this point. I got dressed slowly.
Illustration by Stephan Schmitz
In his office, I scanned the diplomas and photos on the walls while he typed, looking at his kids and smiling wife and wondering how much of his work permeated his home life. He was frowning at something on his computer. Then he looked up said, “There’s nothing wrong with you. The test was completely normal.” I smiled inadvertently and felt warm inside. Waters rushed into a parched riverbed. Eagles soared over valleys. Are you sure, I asked? Yeah, he said, brusquely. Do you have any more questions? I didn’t. I thanked him, this magnificent man, and stood up and walked out of his office and out of the building and on to the street of the wonderful living city. I called my wife to tell her the good news and on the way home I splurged on an expensive woven wool hat and smiled at all the New Yorkers in the subway.
In the week that followed, I woke up early and happily performed all the mundane tasks of my life. I went cheerfully to work. But physically, I didn’t feel back to normal. My symptoms hadn’t improved, I just felt better about them. In time, I returned to the internet in an effort to understand what might be happening. I knew that people make mistakes in medicine, and wondered if he could have missed something.
You can find whatever opinion you want on the internet, and I did. A woman on a discussion board related the story of her husband, who was convinced something was wrong: he was feeling weaker and weaker, but his EMG was normal. Six months later he had another EMG and their suspicions were finally confirmed – he had ALS. Of course, the EMG, like any test, is operator-dependent and potentially fallible. The medical literature supports EMG sensitivities of only 60-70% for motor neurone disease. Dr M hadn’t mentioned this possibility, that one EMG might not be enough. But then he was experienced with these things and he was only telling me what I needed to know. If I had a normal EMG but I might go on to develop ALS, then why tell me that now? What would be gained by subjecting me to six months or more of worry. Better that I enjoy my last few healthy months. And if I were smart, I wouldn’t ask too many questions myself. A diagnosis is a curse. And so I decided I would live with the ambiguity in a kind of modified denial. I would not seek out more tests or opinions but rather wait for the disease to reveal itself – or hopefully not. At least this way, there was a chance I didn’t have ALS. Throughout that dark winter, I lived aboard that tiny raft of hope.
By the middle of February, I had started to get muscle twitches, another of the cardinal features of ALS. They started in my hand. A muscle would begin twitching for a few minutes and then stop. And then it might start somewhere else. Sometimes two muscles would be twitching at once. They would start without warning, tic tic tic, like someone tapping me on the shoulder to remind me I was going to die. Then would come a wave of fear, drawing back a curtain to reveal the mortal reality that I had successfully hidden from myself. I hid the fasciculations from my wife, but she figured something was wrong and I finally had to tell her. She thought I was being ridiculous, and I had to convince her to be worried. I showed her the twitches and then she did become worried. Then I had to convince her not to worry. I comforted her. I joked about it. But I felt lousy and weaker as the winter wore on.
Meanwhile, my life was a gif loop of diapers and sleepless nights. My daughter, who was less than a year old, would wake up at three and start yelling. An astonishing man-like sound issued from her throat and grew in intensity until I got up and came to her crib and put my hand on her back for eight minutes. She would fall back asleep but then I would be wide awake, sitting in hallway in the dark, blinking in the glare of my phone as I read about ALS at three in the morning.
Nothing had prepared me to confront my death. Despite having taught medical students about it and worked with dying patients, despite having read about it and done meditation and silent retreats, I quickly realised that I was lost. I was inadequate to the experience. I had not done any of the kind of spiritual work that would be required to forestall the panic and dread of facing my mortality. I didn’t even know what that kind of work would look like. Leaving my children without a father was the worst of it. In my dreams they wandered through empty streets calling for me. I thought of Michael Keaton in My Life, making home movies to leave something behind for his newborn. I thought I should do this too, with my iPhone. But what to say to a four year old? Or to a 14-year-old? And how might I devise a system to deliver the content at set intervals?
I imagined an exercise where students would be told they have cancer and left to pick up the pieces of their lives
By the end of winter, I became accustomed to a novel feeling: living without hope. It was a physical sensation, a heaviness that presented itself shortly after waking in the morning and interwove itself into my daily activities. I went to work with my cloudy disposition but had no appetite for much else. The only thing that gave me some pleasure was buying electronic things on Amazon. The house was littered with motion operated LED lights, Bluetooth speakers, USB battery chargers, and other electronic detritus. In the medical school, I was tasked with writing the death and dying curriculum for first-year students. It was a cruel coincidence, as ALS is the exemplary case typically used in medical schools to teach issues around death and dying. My research on the topic required reading cases of patients grappling with weighty decisions as they died slowly of the disease, their spouses wringing their hands. I wasn’t sure I could trust myself to calibrate the mood and hit the right note in the lecture; the trick was to include just enough grey realism for their level of development, tempered with some uplifting words to buoy them and give them purpose in their introduction to clinical mortality. It was work that had to be done but it gave me no pleasure.
At the same time, I was testing first-year students on the physical examination. I sat in a cold room watching them examine each other, each one reassuring the other after every step as we had taught them: “great, your lungs sound fine”, “your heart is totally normal!” Strung one after the other for hours, the performance seemed a celebration of their youthful immunity from harm and disease, their separation from the world of real patients and actual sickness. How absurd it all was, what a charade. And what a disservice to their real education. I imagined an exercise where students would be told they have cancer and left for a semester to pick up the pieces of their lives. It was only with my patients that I could escape from my predicament for a little bit. It felt good to care about them and try to put them at ease. My own proximity to death made me more present in their suffering. And whenever I came home to my two-year-old son running to hug me and tell me about whatever charming trifles had made an impression on him that day, I tried to be cheerful for his sake.
Illustration by Stephan Schmitz
One week, on two separate occasions at the hospital cafeteria, I bought a drink and something from the salad bar and the total came to $ 6.66. The cashier looked at me warily and my rational mind decided to take a break. I started doing everything in sevens as I had read that seven is a lucky number. Seven brushes of the teeth, seven chews of the burger. At the same time, I couldn’t help but wonder whether I had brought this illness on myself. Whether I had eaten too many microwavable burritos, or taken the wrong vitamins, if somewhere I had made a mistake, had become a person I was not supposed to be, whether I was paying some existential price for shirking my responsibility to some other life that I didn’t pursue. I looked for meaning in my symptoms. I tried to read my disease as a sign. And all the while, I was bargaining with fate.
One night after a few drinks, I donated $ 777.77 to the ALS foundation. I kicked myself for having forgotten to do the ice bucket challenge and promised to attend to that as soon as the weather got better. I promised I would have more fun, I would take a larger perspective, I wouldn’t get enraged at how people drive in Brooklyn. I promised to live more bravely. To whom was I promising these things? At a friend’s festive dinner, I was seated across from a woman from Shanghai. We talked about superstition and my fixation on the number seven—it was part of my way of opening a door, if only she were to ask one more question then I could tell her about the ALS which I desperately wanted to do. Instead, she laughed and said seven is very unlucky number in Chinese mythology, a number associated with death. I felt like throwing up. I couldn’t even manage a smile.
By the spring I had lost 5kg. My left arm and leg felt like jelly most of the time and fasciculations travelled over my body throughout the day. Sensory symptoms are not common in ALS, but can be found early in the disease. I still wasn’t certain that I had the disease, but in my mind I was just waiting for it to get worse before I completely gave up hope. The inconceivable, irreducible, bewildering fact of my mortality was like some grotesque object that looked different from every angle, a concept that resisted incorporation into my understanding. It kept occurring to me how surreal it is that this is how it all turns out: this the resolution to the to the varied plot lines of my life. This is the punchline. I was not fun to be around. My wife was supportive and she was patient, but also gently pointed out the possibility that this whole thing could be all in my mind. Was there any objective evidence that I had the disease? Did I have any objective weakness? The answer was no and no. I carried my kids up the stairs, I could do 50 push-ups. Had the studies all been normal? Yes, they had. She convinced me to get out of my psychic echo chamber, to stop being my own doctor, as it were, and to go back to the neurologist.
A week later, I sat in the examining room again, dressed in the insubstantial paper gown waiting for Dr K to walk in. I had decided to apply for life insurance and planned to ask as a favour that she minimise her concerns about ALS in the medical record. When she entered the room and asked how I was, I became overcome with emotion. I kept my composure with some effort and said that I didn’t like the direction things were going and I was afraid I would have to make some serious choices soon. She looked at me quizzically and then when she got the point of what I was saying, she told me that I should see a psychiatrist. “That’s all right,” I said, taking a deep breath. “I’m coping all right. I’m certainly not going to take any antidepressant. I’ve been… ”
I really don’t think you have ALS, Dr K said. Two neurologists have told you this now, and still you’re not convinced
She held up a hand to stop me. It was her opinion, she said, that my symptoms were not an organic illness. They were an expression of some inner psychic distress. It was all in my head, in other words. I blinked. This was welcome news, yes it was. In my own clinical practice, I often believe this of patients, and on rare occasions I’ve suggested this sort of thing directly to them, but it’s a tricky business. Many patients would take it as an insult. I, on the other hand, was delighted by the possibility. Certainly, the thought had occurred to me as well, but to hear her say it was better. But the solution felt too facile. Psychosomatic disorder should have been the diagnosis of exclusion, after having ruled out more serious things. I had never had psychosomatic symptoms before. In fact, while medical students are thought to be prone to hypochondria, practising doctors tend not to be. They are often notoriously dismissive of their symptoms, either because of fatalism or awareness of the limitations of medicine.
“Are you sure?” I asked. She examined me and pointed out I had no muscle wasting. My reflexes were normal and my strength was fine. She couldn’t elicit any fasciculations and she reminded me that all my studies had been normal. The lab tests and MRIs and EMG had shown nothing. I really don’t think you have ALS, she said. Two neurologists have told you this now, and still you’re not convinced. Maybe you need to change some things about your life. “Yeah I’m sure I do,” I said, “but could it be early ALS?”
She paused. “I don’t think so,” she managed. But it was clear that she couldn’t give me a definitive no and I was going to be miserable until I knew for sure. We both agreed that it could be time that I see the ALS specialist. And this is how I was referred to Dr HM at Columbia.
I was familiar with Dr HM because I had searched online for ALS specialists in New York. I had read his scientific articles on PubMed and looked at his photos on Google Images and had developed a deep admiration and gratitude for him based solely on projection. He was a distinguished-looking Japanese man whose image conveyed competence. I was eager to meet him for a third opinion because in one of his papers he had detailed a list of agents that may possibly slow the disease down. At the very least, I thought, he could tell me how to buy some more time.
Related: ‘You think I’m mad?’ – the truth about psychosomatic illness
What I was hoping for most of all was a diagnosis of benign fasciculation disorder, a poorly understood phenomenon of muscle twitching that appears to be more common in medical students and physicians. One author had coined the term Fasic – Fasciculation and Anxiety Syndrome in Clinicians. In his paper, he presented a case series of 20 consecutive doctors who presented with fasciculations over the course of a few years. Being doctors, and being familiar with ALS, they sought medical attention. A third of them were practicing neurologists. The majority of them left with a diagnosis of benign fasciculation syndrome. In other words, it was a thing: doctors who think they have ALS, but who actually have Fasic. But I kept getting stuck on doctor number 20 described in the paper, a neurologist who developed ALS and died.
On a gusty and drizzly day, I sat in Dr HM’s waiting room scanning the other patients for signs of motor neurone disease. A small neatly dressed Japanese man appeared in the doorway, looked at me and said my name. Dr HM emanated a benign and kindly paternal presence and immediately commanded my trust. I followed him into his large, not particularly modern, not particularly neat office and sat across from him. He took out a single sheet of paper and a pen and asked me to tell him my story. As I talked, he politely interjected questions and urged me to continue, all the while writing on that single white sheet of paper. When I was done, he looked up with raised eyebrows and said, “Is that all?” I felt embarrassed and had the urge to make something up. But if he was unimpressed, certainly this was a good sign. Then he led me to the table and did an exceedingly thorough examination. Everything about him was careful and measured and calming and I took note for my own practice – should I survive this ordeal.
After the examination, I sat across from him as he slowly scribbled notes in his deliberate way. He looked up and took off his glasses and said, “You’ve been to two doctors now who told you that you don’t have ALS. So it will be hard for me to convince you that you don’t have it, but I will tell you that I have seen many patients with isolated fasciculations without any muscle weakness or objective signs and none of them have developed ALS.” He paused. “This is over many years. None of them.” I nodded. “In fact,” he continued, “I myself have had fasciculations for 20 years. I’ve thought I had ALS many times, but I have never developed it either,” he said grinning. This self-disclosure was an unexpected gift. I nodded, involuntarily and continuously and let the generosity of this great and learned man fill me up like oxygen.
“So I don’t have ALS?” I asked. “I really don’t think so,” he managed. I stopped nodding. And as if reading my mind, he suggested that if I had any further doubts, that I should get one more EMG, and that if that were normal, then I should forget about ALS.
I did get that second EMG from Dr M and it was normal. He confirmed a diagnosis of benign fasciculation disorder, mostly because we couldn’t think of whatever else this could be. I told Dr M that I had developed a profound respect and admiration for the people who were working to find a cure for ALS. I had thought so many times of the families who loyally took care of their loved ones and the patients who bravely faced the unfaceable. I had donated money to the organisation, I had liked it on my Facebook page, I had considered going to some of their events. He shook his head and said that I should just forget about ALS. “Erase it from your memory and from your life,” he said. His view was that the more I dwelled on this diagnosis, the more claim it had over me and the more I would keep manifesting symptoms.
My symptoms are essentially gone now, though occasionally I feel something in my leg that will remind me of that dark time. In my memory, I was circled by a shark that ultimately lost interest and swam away. In the spring I decided to change jobs after 15 years at the same place. I took a long break. I started to lift weights. Some turning point occurred that I still don’t have the perspective to understand. I was initiated, as people my age often are, into an awareness of the fragility of our being. I realise too that my adventure was a rehearsal for something else, the reality behind the curtain of youth that older people politely keep to themselves. Yet I have no interest in dwelling in the shadow of death’s certainty. As the psychiatrist Irvin Yalom has written, living in proximity to death is like looking directly at the sun. In the absence of strong faith, it takes a special kind of spiritual evolution to face it with equanimity. I don’t have that so I continue to live as before, with the adolescent’s illusion of eternal life. This is not to say that nothing has changed. I have seen that life is dear and it is on loan to us. And so everything just feels more precious.
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