Donal Lynch: Health scare sparks a new beginning
His life in New York was upended by a rare neurological condition and back surgery but his diagnosis and a return to Ireland gave Donal Lynch a fresh perspective on life
I'm lying on a tissue-covered slab in the office of a neurologist at NYU hospital in Lower Manhattan. I feel like I've just come to, even though I was technically awake for that whole ordeal.
The paper gown they've given me to wear is showing dozens of pin pricks of blood from the needles they've just stuck into my back and arms. My neck throbs from where they administered electric shocks to my collarbone area. They gave up near the end when my whole back went into spasm, the nerve impulses just static on a screen.
Above my head is a chart, designed perhaps for children or those with English as a second language. It shows a series of Bosco-like faces progressing from a full smile to a frown. You're supposed to tell the doctor which one corresponds to how you feel. I feel like a chicken which has been halved. In the corridor outside the door I see the neurologist look down at my file with a colleague. They shrug at each other, as much as to say they've now exhausted all possibilities. We are now a full year into these tests. I know they're run out of options. I look up at the little Boscos. Definitely a frown today.
When people get sick you sometimes hear them say "I never thought it would happen to me." I always felt fairly certain something bad, possibly medical, would befall me, but I thought it would be something else. I grew up with the idea that gay men expired to the sound of opera music playing - like in the movie Philadelphia. On a trip back to Dublin my dad just came straight out with it and said "you know everyone will presume it's AIDS". That, if it were true, would have made things much easier. I could have taken the pills, worn the ribbon and gone on the fun run in Central Park. But what I had felt unearned and quite random, with no Oscar-winning performance to serve as an emotional template. It had come on very slowly and completely painlessly, as a slight weakness in my left hand, which at first I attributed to laptop use. The fact that it was painless, combined with my typically male aversion to seeking necessary medical care, meant that I only showed it to someone in the rare instance that I bumped into a doctor socially (they invariably said "have it looked at"). There always seemed to be something more important to do than joining a hospital queue. I realise looking back that there is some underlying tendency in me to turn away from the worst things, rather than facing them straight on.
To put it in overall context, health was just one strand of my feckless insanity in those years. In 2007, before the crash even gave adventure-hungry young people an acceptable pretext, I decided to leave Ireland. Without promise of a job, I moved to America, land of the brave, the free and uninsured millions of whom I would become one. Obamacare was still a twinkle in the Democratic contender's eye. To insure yourself privately in the States is very expensive - upwards of $600 a month and anyway since I arrived already sick I was basically uninsurable.
I put all this to the back of mind - whatever was causing the weakness seemed to have plateau-ed (it's stealthy like that, I later learned) and, anyway, who needs their left hand? Sometimes I would get little jolts of clarity about the seriousness of the situation. A pint glass would fall from my hand. I would struggle to get laundry out of the dryer. A nurse would ask me if I was "deformed." One murky summer's evening in New York I went to see a showing of the 1980s children's classic The NeverEnding Story. At the end of the film one of the characters, Rock Biter, stares down disbelievingly and wails: "These strong hands! I thought I could trust these strong hands!" It was like a little whisper from the recesses of childhood memory, reminding me to take care of myself. It seemed quietly incomprehensible that a part of the body would just stop working.
Eventually a friend of a friend got me a place in the queue at a clinic where the receptionist looked aghast at the fact I was paying cash and suggested I be put on Medicaid, the American version of a Medical Card. Nobody was more surprised than I was when I was approved. The waiting room at the new clinic was on the whole filled with black or Latina ladies of advancing years. Even the nonplussed receptionist fitted this demographic. And I'd love to tell you they didn't get worse healthcare, but they and I did. Tests took months. Results were read with a shrugging resignation to more tests. Meanwhile, I sat around and waited with the old dears. The day Obama was elected I toasted my coffee with them.
To the sci-fi drama of this neurological disorder I now added the quotidian horror of a back injury. That same summer I ruptured a disc lifting weights at the gym. It caused knifing sciatica down one leg, which woke me every morning like a splash of cold water to the face. I would walk it off over the next few hours, never sitting again the whole rest of the day (I even ate my dinner standing up). Meanwhile, the weakness had quickly and completely spread into my right hand. Pottering around my apartment, popping painkillers like they were Smarties, and barely able to hold the glass to wash them down, I did feel that my life was falling apart.
At moments like that I've always found that kindnesses are more flooring, in a way, than further cruelties. You can inure yourself to disaster but tenderness can devastate. The only moment I really shed a tear about the whole thing came on the street outside the office of Dr Steven Beldner in Midtown. He noticed that I was uninsured and told me that "one hairy ape to another" he was not charging me his fee which amounted to more than €800. Outside his office I choked up a bit. The bleakness of the moment made the kindness of the gesture all the more moving. I looked down at the card he gave me and saw the name: Daniel MacGowan.
This was my luck turning. Unlike most Irish emigrants I felt disconnected from the rest of the diaspora - day-to-day I seldom met another Irish person. Yet at this most crucial juncture in my life it was that connection which helped. Daniel MacGowan turned out to be from Dublin, a former Royal College of Surgeons student who had trained in America, and, coincidentally a cousin of the singer Shane MacGowan. I knew another cousin of his from my tennis club in Dublin. I all but festooned the email with shamrock and he bumped me to the top of his queue. He examined my hands with a fierce intensity and asked me urgent, quickfire questions which doubled back like a cross examination. In the old days, before the invention of modern scanning equipment, neurology relied more greatly on the hand-to-hand intuition of the doctor. Dr MacGowan is one of those diagnostic savants who would have done well in this pre-MRI antiquity. He's also a tennis player which meant I didn't have to worry about statements like "it's destroying my stroke" sounding trivial. Without even glancing at my previous test results he put aside his notepad and told me: "This is what you have. And yes we can get you back to normal."
The relief surging through my body was such that the name of the condition had to be repeated a few times before I took it in: multifocal motor neuropathy. Google would later confirm that it's a very rare immune-mediated nerve disorder with early onset symptoms similar to Motor Neurone Disease (which, thankfully, hadn't even crossed my mind). It's usually confined to the limbs (most likely starting in the arms), usually painless and never has any "involvement" of the sensory nerves, meaning you don't really feel anything besides weakness. It was only formally recognised as a condition in the 1980s after some years of controversy. Later a nurse would express this progression of medical knowledge as it pertained to me by looking down at my chart and saying, "yes, I thought so, I knew you'd have something rare".
The good news was that I only needed a spinal tap to confirm the news (a week of head splitting nausea). The bad news was that the treatment cost around €16,000 a month in the US and I would be leaving New York, probably for good, to get care at home. There was time for one last burst of lotus eating however. Once I emerged from the constant migraine of the spinal tap I went out for the next week. It seemed like the only thing to do. The game was over and the pitch was being invaded. A friend helped me break up my IKEA furniture (out of which a consolatory $50 fell) and I sat there, like a refugee, looking at the cheap rubble of my life. By now my body felt like just another bit of that sad debris. I had begun to drag my left leg behind me when I walked. The plateau was over.
I landed with a bump in my old bed in Dublin, with Junior Cert art staring down at me from the wall. Around this time I also had surgery on my back, which, initially at least, didn't seem to work. I still moved like a rickety Edward Scissorhands. I could barely sit into a car by this point. I initially struggled to get the amount of the medication - immunoglobulin - which I needed and it seemed to be slow in working. Eventually one of the doctors at the clinic I attended, perhaps weary of my questions, said: "I think it's better if you meet Professor Hardiman." This was my other great stroke of luck. I've heard a phlebotomist refer to Orla as an "icon" of the health system, but that makes her sound like some lofty deity. In fact she's incredibly accessible and has a sense of humour you almost never encounter in a profession dominated by high achievers. At a moment when the system is stretched like never before she is also a passionate and articulate voice for patients' rights and evidence-based care.
I also grew to appreciate aspects of Ireland. In New York hospitals even small procedures had the atmosphere of an alien autopsy - no talking, no banter - whereas Beaumont seemed to be staffed by an army of kindly, bustling aunties, who chatted so warmly that I forgave them for stabbing me with needles. I was in the neurology ward, where most of the patients had MND. If you've never experienced this illness in its last stages it is a pretty frightening sight - I can only imagine what sufferers go through. What I saw made me feel like an impostor with my petty little neuropathy, but it did give me a sense of perspective.
As the years have progressed since then the condition has more or less stabilised and has receded a little into the background of my life. Gradually a nurse began to administer the weekly dose to me at home and eventually I learned how to give it to myself.
Being able to administer the medication myself has made the condition more of a footnote in my life. It's reliably there if I need it as an excuse for losing at tennis, for instance, but it's not stopping me from doing up my buttons. It has travelled the world with me. I am constantly amazed that you can just put a litre of human blood product in your check-in luggage and nobody asks any questions.
When you start taking medication doctors tell you the list of possible side effects. Google and message boards will terrify you with another ream of possibilities. But nobody ever tells you about the potentially positive consequences of a seemingly terrible situation. You don't know those until they are just behind you. Multifocal motor neuropathy has given me a perspective on life and my health that I would never have got if I had to wait around for middle-aged cancer.
It created a little clearing of vulnerability in adult life which brought me closer to my family. The illness also made me realise that for all the talk about trolleys and waiting lists and the bedlam of A&E - which I'm not minimising - the biggest unspoken truth of the Irish health system is that, some of the time, it really works.
I'm acutely aware that I'm probably a net drain on society, but without the treatment I'd be an even bigger net drain. The system, for all its flaws, put me back together again and gave me a second chance. And for that I'll always be grateful.
Sunday Indo Living