So It Seems: Of Hearts and Hospitals

It’s almost pitch black, at about 10.30pm on a Thursday night, in the middle of nowhere somewhere between New York and Baltimore. I walk out across the petrol station while the bus takes a rest break, and the cicadas aren’t just humming – they’re screeching. I look around. It’s desolate and dark.

I’m meant to be in New York, coming to the end of an internship with the office of Helen Clark, Administrator of the United Nations Development Programme – a dream job. Instead I’m on a Megabus heading to Baltimore, on my way to Johns Hopkins Hospital, about to see the doctor responsible for discovering a rare condition called Loeys-Dietz Syndrome and an expert in heart surgery.

How did I get here? And how did it come to this?


Eight months ago, in December 2013–January 2014, I attended the wedding of my friend, Akif, in Pakistan. It was a unique experience, made even more memorable by the fact that for 10 days, 15 friends of Akif’s were largely confined to an apartment in Karachi because of the security situation in the city. The apartment was in the Defence quarter, located opposite an ostentatious shopping mall. A McDonald’s had its grand opening while we stayed there – but the apartment was otherwise surrounded by an expanse of desert-like terrain, with the shadowy shapes of Karachi’s skyline only barely visible in the distance.

We all went a little crazy in that apartment, biding our time until wedding events in the evening. There were rich conversations: on New Zealand politics and law, on the books we had (I was mocked for having a copy of E.F. Schumacher’s Small is Beautiful, which was read aloud and ridiculed), on the future. But even with the best company, most people get fidgety after that much time in an enclosed space. And we were no different. We were driven to activities that would’ve bordered on the wacky to anyone watching from the outside: building towers of bottles on glass tables, and narrating shadow puppet shows before we went to sleep at night – three per bed, with a hessian sack in place of bedding for one of us.

On one of these days, with the fan whirring in the background, the only doctor in our group, Andrew, turned towards me from across the room. He looked at me – as I stretched – and, joking in part, mentioned that in some ways I looked like a person with an unusual disorder called Marfan Syndrome. He asked me whether I could do certain things – like whether my thumb poked out if I clenched it under my fingers in a fist-like move – and made some comments about my limbs and my chest. “You should get it checked out next time you go to the doctor,” he said – or words to that effect.

Marfan Syndrome is a genetic connective tissue disorder. It tends to arise in people who are tall, who have long limbs, spidery fingers, and slightly odd-shaped chests – though the symptoms and diagnostic testing require much more than this. If undetected, it can lead to sudden heart problems.

At the time that I heard about Marfan’s, I laughed off this comment. My friend Andrew was only half-serious. And my quick Googling revealed body shapes that, while resembling mine, looked much more unusual than my own.

In hindsight, I’m extremely grateful to Andrew for making this off-hand remark. In some ways, it was in that apartment in the Defence quarter of Karachi, that all of this began.


Earlier this year, as part of my Master’s degree at the University of Oxford, all students were asked to organise an internship, a “summer project”, to round off our studies of public policy. After some brainstorming, I decided that my ideal position would be with Helen Clark, the head of the UN’s Development Programme and former Prime Minister of New Zealand – a progressive leader who I’ve long looked up to. With the support of the Blavatnik School of Government, I managed to arrange this internship in New York for two months from late June until late August 2014.

Fast forward to early August – and I’m having the time of my life. I’m working with intelligent, friendly people, passionate about making a difference in the world in a rigorous way, and at scale. Topics at work span public health (in particular, HIV/AIDS), climate change, poverty reduction, and how organisations can best anticipate the future (“strategic foresight”). And on the weekends I’m roaming coffee shops and independent bookstores – Double Dutch Espresso, McNally Jackson’s, 9th Street Espresso, the Housingworks Bookstore – and finally coming to love a city I’ve always wanted to like but never fully wrapped my head around.

On one Monday, though, as I’m emerging out of a subway in East Village after a particularly busy week – and on my way to Bluestockings, another independent bookstore with a strong activist and feminist bent – I feel a fleeting but sharp chest pain that gives me pause. I’ve become quite an anxious person in recent years, so my mind leaps to the worst case scenario. I slow down, take a break, and decide to buy some water. I walk on for a while, but the pain returns, briefly. I text my Mum, back in New Zealand – a nurse, and a wonderful person who knows my anxiety as well as she knows about addressing pain. She calls, asking me whether I have been eating and drinking and sleeping well (a fair question given my occasional neglect of these things), and tells me to stay in touch. Inside Bluestockings, the bookstore, I can’t really concentrate. I feel weak and a bit faint in the New York heat. I remember sitting on a bench outside the bookstore for at least a few minutes, and then gradually getting to my feet to take small steps towards the subway home.

At home, my kind flatmate (“room-mate”), Mike, a medical student doing a period of practical training in New York, agrees to have a chat about how I’ve been feeling. He listens to my heart and mentions that everything seems and sounds relatively normal – noting, I think, that the issue could be to do with my aorta, but commenting that at 26, any problems would be unusual. “Keep tabs on it, though,” he says – and if any pains recur, I should let him know, he tells me. In the preceding few months, Marfan Syndrome had come to my mind several times (during occasional chest pains in Oxford), and it returned to my thoughts again. Had Mike heard of it, I ask, and what did he think? He laughs, surprised that this unusual disorder would come to mind. He expresses skepticism, but also looks equivocal. He can’t be sure, but it’s certainly an unusual syndrome.

Then, on Sunday – unfortunately the day after Mike moved out of the apartment – I blacked out. The night before I’d read a tragic story in the New Zealand Herald about a young New Zealander who died suddenly in Sydney of a rare connective tissue disorder. He looked tall and slim, and I couldn’t help think of Marfan Syndrome. I woke up worrying, and after a bit of an Internet review, which I tried to filter for more reputable sources, I found myself even more concerned. What if I had the syndrome, and I was about to be suddenly struck down by it? I read somewhere that severe episodes must be caught within a couple of weeks if they are to be managed (and sometimes they can have more immediate, catastrophic effects), and I felt like my pains had been occurring for the last week or so. Whether because of anxiety or something else, I found myself getting blurred vision as I sat on the side of my bed. This was the worst I could have feared, I thought; but at the same time I tried to stay calm.

Some water might bring some relief, I thought – it was what my Mum had always recommended. I got up and took a few paces down the hallway towards the kitchen, but at some point I realised I wasn’t going to get there. I turned back towards my bedroom, and next came a few moments that I won’t ever be able to piece together. I was fortunate to slightly nudge my head on the floor – presumably after my legs buckled from under me, or perhaps after I fell backwards – at a force not strong enough to cause any damage, but distinct enough to bring me back to consciousness. I stared back into my bedroom, startled and a bit bemused, and it took me a few seconds to realize that I had fainted or somehow lost consciousness. “I think I just fainted,” I said to my room-mate, Matt, who kindly grabbed me some water before he had to race out the door. Mothers and others must think alike: water is the remedy for most ailments.

I still thought that going to the hospital would be an overreaction – a lot of people faint, for a lot of reasons, right? – and in the back of my mind was a worry about the cost of hospitalization in the US. But when I sat down and felt a numbness in parts of my body (my foot and my arm), and began losing vision again in my left eye, I thought that the situation was probably serious enough to start making inquiries about medical options.

What followed – between that moment and getting to the hospital – was pretty farcical, and wouldn’t happen in a country with public healthcare. I was very lucky to have emergency health insurance, provided by the Blavatnik School of Government where I was studying. I decided I should call them to check that they would cover my hospital visit, but I realised that I couldn’t call them off my US cell phone. I added Skype credit – technology has done wonders for me, at different stages of this story – and called my UK insurers. I was told that they would call me back in a few minutes, and that they recognized that it was an emergency; after 20 minutes I called them, only to be told by a friendly-sounding man that the insurance would cover my hospitalization, and that they would now find a hospital with which they had cover and call me back shortly. I waited, I think, for another 40 minutes, all the while sitting at my bed and playing out scenarios in my head. I decided to play some music by the New Zealander Liam Finn to calm me down – I had seen him play an outrageously good live show in New York only a fortnight previously; Liam Finn, like technology, would be a helpful companion in the coming days. His song, ‘Second Chance’, was ringing through my head:

You stand around your haunted home

Those demons won’t leave you alone

Don’t forget me when you grow old

Remember! Remember! Remember!

I looked at my clock. Almost an hour had passed. I decided to call the insurers again, and a lovely man named Kevin told me that I should go to Mt Sinai Hospital, and that I shouldn’t worry about being covered.

In another moment that was as comical as it was farcical, I realised that the mobile data on my phone plan in the US had not been working, though I had paid for it. I suddenly thought that I should see if this could be fixed – if I was about to go into hospital, I’d need a way to speak to people, and perhaps I could get hold of them on Skype.

“Hi, uh, I have a bit of a medical situation,” I stammered – my Kiwi tendency towards understatement probably coming through here – as I leapt into a taxi I’d hailed down.

An upbeat, male call-centre voice replied: “What is the problem with your phone, sir?”

“Ah, yeah, I don’t have Internet though I’ve paid for it. But I really need Internet: I’m about to go into hospital and need it to get hold of people.”

In words that I am not making up, and which show up the ills of a society that prioritises rule-based bureaucratic interaction over human dialogue, the man responded: “So, let me summarise: you have a problem with Internet on your phone …”

If I hadn’t been so worried, I would have laughed. As it was, I let out a small smile. Unfortunately, my Internet couldn’t be fixed during the course of that taxi ride. But I was too focused on the hospital to really care. Moments later, I checked myself into the emergency ward of Mt Sinai Hospital, New York.


I had been expecting to wait for some time, but I was impressed with the speed at which I was moved into a bed in the Emergency Department. I was given some preliminary interviews, told I would be getting various scans done, and fitted out with a gown. (I later discovered that I had put the gown on the wrong way round, with openings – usually exposing the back – that revealed my chest. I got some funny looks, but as anyone who has spent time with me knows, there was hardly much of a muscular spectacle to behold there.)

The first day in hospital flew by. I had curtains around my bed and I lay back, relaxed, looking out into the main central medical desk in the department – a positioning that gave me the curious feeling of being an audience member peeping at actors preparing to go onstage. It was especially curious being able to hear, occasionally, the doctors discussing my case, on the phone or with each other: “Uh, yeah. We have a 26 year-old male, who’s had a syncopal episode, with marfanoid habitus …”

That day was full of slightly absurd episodes – or maybe I was just on the look-out for absurdity to keep myself calm. There was the rap-battling, freestyling male-and-female nurse duo, who were constantly sniping at each other – with my highlight being the male nurse’s line, “If I was a donut/You’d wanna glaze me.” There was the drunk man brought in – whose severe alcoholism, to be sure, was no laughing matter – who croaked out for a urine bottle, only to use it, put it down next to his bed with no lid on it, and then swat it over, spilling the contents all across the floor in front of me (where it stayed for a good 10–15 minutes, painting the floor yellow). There was the CT-scan room, a room that I thought would be full of sterility and technology – but that was brought alive by the sound of loud hip-hop music when I was taken in on a stretcher. (“They always have the best music in here,” deadpanned the staff member tasked with pushing my stretcher.) I also couldn’t shy away from hearing the rectum examination that had to be done on the man with whom I was sharing my right curtain; I’m sure this procedure was much worse for him, since it had to be done essentially in public, with only curtains shielding him from the other patients. Welcome to the Hospital.

Those anecdotes may imply that I made light of the experience. I didn’t. I felt comfortable talking to people within the hospital – the nurses and doctors were very warm, partly I suppose because it was not so common for someone as young as me to come in. But when I made contact with the outside world – when I called my friends Alaister and Mitch, and when my parents made contact by calling the hospital – I found myself slightly choking up. It was only in talking to people not in the hospital, and in hearing their reactions to what had happened and what was happening, that I started to realize the seriousness of the situation.

And some important news came towards the end of the day, around the time my friend Mitch visited: one of the scans revealed that I had an enlarged aorta, or aortic aneurysm. And the doctors were all seriously considering the possibility that I had Marfan Syndrome, with all of them being impressed that I had a friend that pointed out the possibility to me. The fact that the enlarged aorta was being investigated alongside Marfan Syndrome was significant: if I had Marfan’s, the enlarged aorta would be considerably be more problematic, as the connective tissue disorder at the heart of Marfan’s would make it more likely that the aorta might tear (through a “dissection”), with potentially deadly consequences. The doctors began to talk about surgery, with one even using the term “life-threatening” to describe my position, a term that stayed with me. They said that I would definitely have to stay overnight as they considered options.


I was moved the next day to an observation room with three other patients. There was still a chance that I would have to go into surgery. A friend (and my girlfriend’s brother), Paul, took time out of work to chat and to bring me a phone charger and some headphones. I also struck up conversation with a lovely older woman, Gladys Brodsky, who was dealing with the effects of heart surgery. On my second day, she invited me over to her side of the room to share a hospital lunch.

Gladys was a Jewish artist who had spent her life in Woodstock. She was grey and frail, but with a certain elegance that remained even as she faced up to the vulnerability of being in a hospital. In her own way, she was charming: she spoke about Bob Dylan, Joan Baez, and others living in Woodstock; Israel and Palestine; and her past days as a women’s rights activist. “If all men were injected with oestrogen at age 13, and took on a few female characteristics,” she mused at one point, “I think the world would be a lot different.”

She spoke lovingly about her father (“a socialist, not a communist”), who used to hold learning evenings every Tuesday with members of the community on political topics (“only the men”, she noted, when I asked if women went too). “He was a genius,” she said wistfully. I told her that I sometimes felt similarly about my own father, and this sparked a further discussion about whether our conception of “genius” is gendered – we both concluded it probably was, and that our mothers were probably geniuses, too. We touched on bigotry, as well – and Gladys spoke eloquently about how racism lies “deep in the bones” of the United States.

For the first time in my life, I thought about the beauty of good conversation, and how much I enjoyed it. In the listening and learning that exist in a conversational dialogue, in the symmetry two or more people can find when each shares a part of themselves, in the spontaneity that can gush out when two people are truly comfortable – there is something special.

In between this conversation and the visits of other wonderful friends (my old flat-mate Alaister, who shared partying stories to keep me upbeat, and my dependable friend Mitch, who would visit me on three consecutive evenings after long days at his law firm job), there was sobering medical news. There was further talk about surgery, which my mother (calling from New Zealand) cautioned against going into suddenly, and the doctors wanted to continue with further testing. They told me that MRA imaging was going to be done next, to try to resolve discrepancies in the measurements of my enlarged aorta.

Perhaps in an effort to steel myself against these sombre updates, or to find some semblance of support as I tried to maintain mental strength, I began to build some rapport or warmth with the staff at Mt Sinai. Dr. Weiss always left me feeling buoyant, clasping my hand after delivering updates. A friendly young transporter inquired about why I was in hospital, and when I mentioned that the doctors were interested in Marfan Syndrome, he made me feel better by referring to a young basketballer, Isaiah Austin, who was drafted into the NBA only to have his career cut short by the condition. The story is a sad one, but thinking of myself as potentially in the same category as an NBA basketballer made me feel just a little more chirpy, especially since my sports-playing history is a tale of great aspiration and enthusiasm coupled with limited achievement.

The staff with whom I felt some tension were financial representatives, who visited on several occasions, and called my cell phone (at one point while I was talking to a doctor) to try to get me to sign a payment form. If signed, the form committed me to paying all costs not covered by insurance. The staff pursuing my signature were friendly individuals. And it was not surprising to me to be told about these forms during my stay. But I couldn’t help but be slightly sickened by this constant reminder of the links between money and access to emergency treatment in the US. I was determined not to sign the form, so I asked on several occasions for more time to consider my position, and eventually the representatives must have given up on me, or forgotten about it. A form remained unsigned on the side of my bed when I was discharged – a small, maybe meek, symbol of my opposition to the forces of finance driving healthcare.


Before I was discharged I spent two nights in a smaller room that I shared with a middle-aged man, Joe, who was about to get heart surgery. I didn’t see much of Joe, a slightly taciturn but seemingly kind guy who was a doctor himself, since a curtain remained drawn between our beds. But I heard a lot about him: you cannot avoid learning about other people through overhearing conversations in hospital rooms like that one. One of the first things I heard was a panicked scene when I woke at 5.55am on Wednesday morning to hear, five minutes before his surgery, Joe apparently losing consciousness. His wife shouted, “Joe! Joe!” and cried for help, with monitors beeping loudly in the background in a manner most people will be familiar with from television and movies. Joe recovered, fortunately, but his surgery was delayed, and the incident was a sharp reminder to me of what heart surgery (which was being discussed in relation to my condition) might entail.

It was around this time that I also learned – through overhearing Joe’s family’s comments, and some Googling on my phone – that a patient was being tested at Mt Sinai for the Ebola virus. This didn’t do anything to reduce my anxiety. I started wondering (as anyone might, I think) whether I could have come into contact with the man on my first day in the emergency ward, or indirectly through my visits to reception desks and shops down the corridor. But I soon realised that this kind of speculation wasn’t all that rational, or helpful.

My own medical position appeared to be stable – apart from several moments of brief chest pain, which may have been the result of anxiety – and the doctors were closing in on a diagnosis. After a gentle older cardiologist, Dr. Halperin, spotted a strange double flap at the back of my throat, called a bifid uvula, the medical teams started to favour not Marfan Syndrome but a slightly more aggressive and newly discovered syndrome called Loeys-Dietz Syndrome. Loeys-Dietz is another connective tissue disorder, which often manifests through long limbs and spidery fingers, but also involves certain specific symptoms – a bifid uvula, flat feet (which I have), and aortic enlargement. Doctors are keener to operate on those with Loeys-Dietz Syndrome when the aorta is less enlarged than with Marfan Syndrome (for Marfan the threshold for surgery is a 5cm diameter in the US, I was told whereas the American threshold is 4.5cm for Loeys-Dietz), since the danger of a tear is greater. This made the accurate measurement of my aortic enlargement all the more important: my first measurement had come back at 4.9cm on the CT scan, whereas my second measurement on my echo had been 4.1cm.

To clarify the measurements, I had to do MRA imaging of both my brain and my heart. Getting an MRA done is a strange experience, as anyone who has had one will know. You lie on a slab, with your chest or head fixed in place, and you enter a large dome. Odd sounds are emitted periodically, which reminded me of the robot voices on the Daft Punk song, Technologic. And the technician issues various instructions over a loudspeaker-like instrument, including “breathe!” and “breathe normally!”. To avoid becoming too anxious about it, I again played Liam Finn’s “Second Chance” in my head. The rippling synthesizer sounds and scratching guitar tune kept me calm, and I tried to write out the words in my mind: “Sew the seeds/Sew the seeds to life/By packing up to make it right.” I thought also of the people that had made the previous days bearable – my family and girlfriend, who were constantly in contact; my visiting friends; and the virtual visits I received on Skype from people in the UK and New Zealand (including a wonderful group Skype call with the friends with whom I’d organized a conference in Oxford, the Global Scholars Symposium).

Following a long wait (and a viewing of Robert Reich’s documentary, Inequality for All), the MRA results came back: showing an enlargement of 4.5cm – right on the threshold of surgery. To my surprise, the doctors were confident about discharging me. I asked them to hold off on letting me go so quickly, partly because my girlfriend Julia and Mum were now on their way to be beside me, and partly because I had earlier been told that if I had Loeys-Dietz, I may need surgery at this level of enlargement. After some further discussions, visits, and receiving some lovely flowers from friends Anna and James in London, my discharge recommendation was confirmed – and I was encouraged by the very thorough Dr. Kontorovich to get genetic testing, since a Loeys-Dietz diagnosis could only be clarified with this genetic information.

Leaving the hospital was in some ways a sad experience. I took off the electrodes that had been stuck to my chest (leaving me with paintball-like shapes imprinted all over my chest), exchanged my hospital gown for the t-shirt I’d worn when I first came in, and got myself out of the bed I’d been in for days. As I walked out, I said goodbye to Joe. “I feel like I’ve gotten to know you quite well,” I said, “even though we haven’t talked much.” He smiled. “Goodbye, Max.” And I wrote notes on scraps of paper to the doctors and nurses who had been so supportive. My Hospital experience was over, for now.


My Mum and girlfriend, Julia (as well as a family friend, Lora), soon arrived in New York. It was wonderful to be surrounded by people, after long periods of solitude in the hospital – and having them close, as I slept or walked or read, gave me a sense of security, especially as my mind wandered to whether I could suffer a sudden fatal dissection (something that is a possibility, albeit a small one, given my aortic size and possible underlying condition). It was uplifting to get unexpected messages of support, and beautiful gifts to make me feel better: more flowers from Louis, a care package from Ronan, a book on Ambedkar from Eesvan.

Being out of the hospital and back at work has also been tough, however. In the hospital, I felt relatively healthy, comparing myself to elderly and self-evidently very ill individuals all around me. But outside in New York, I see myself alongside apparently healthy and active people. I’m ashamed to admit it, but if I’m honest, I find myself feeling an occasional flash of jealousy when I watch others and assume (perhaps wrongly in some cases) that they have no health issues to worry about. More importantly, I have started to process the information that I received in hospital. I have wondered about the minute differences between a 4.5 and 5.0 aortic enlargement. And I have thought about how a Loeys-Dietz diagnosis might alter my future career plans and life – since, if confirmed, it would require care and monitoring and may have implications for having children.


I got back on the Megabus on that desolate Thursday over two weeks after the initial fainting episode, which ended up taking me to Baltimore, where an Oxford friend, Steph, generously let me stay the night at her place to allow me to see Dr. Dietz (one half of the team that discovered Loeys-Dietz Syndrome) and a surgeon specialist, Dr. Cameron. In Baltimore, I was told by Dr. Dietz at Johns Hopkins Hospital that it was pretty likely that I had Loeys-Dietz Syndrome, and I finalized plans for genetic testing. Dr. Dietz, a kind and attentive man, emphasised that if properly managed and operated on, individuals with Loeys-Dietz still lead long, successful lives (into their sixties and seventies), and he clarified some information that had made me worried earlier. One statistic that had scared me was that those with Loeys-Dietz have an average life expectancy of 26.1 years – my exact age in August 2014, at the time of writing – but Dr. Dietz emphasised that this was a figure drawn from early cases of Loeys-Dietz; he had now seen a far broader spectrum of cases, which would change the statistic significantly. I had medication confirmed, and talked about surgery with the world expert, Dr. Cameron, who discussed options in the US, the UK, and New Zealand.

I’m now waiting on the results of my genetic testing, finishing my internship, and preparing myself for the thought of surgery or management of my medical condition – whether I have Loeys-Dietz or not, the enlarged aorta will require careful attention. One significant challenge to grapple with is the constant anxiety I have felt that a dissection could be imminent. Is that numbness in my foot a product of bad circulation, traceable back to my heart? What about that neck pain – didn’t Charles De Gaulle have neck pain (as I have read) just before he died, possibly of a connective tissue disorder? And is that chest ache something problematic, or just my anxiety? These questions – rational and irrational – regularly intrude into my thinking, and I am trying to learn to let them pass. But at this point I cannot deny that they are at once distracting, unsettling, and sometimes terrifying.

I feel, alongside that anxiety, a great sense of gratitude and good fortune. What would I have done without the emergency health insurance provided by my place of study? Would I know all this if I hadn’t fainted that Sunday morning (something that the doctors still can’t explain, and which Dr. Cameron called “my guardian angel”)? Would I have even gone into hospital had Andrew not mentioned Marfan Syndrome in that apartment in Karachi eight months ago? Even more fundamentally, how would things be different had Dr. Dietz not developed our collective understanding of Loeys-Dietz Syndrome? Whilst the information I’ve recorded here has not been easy to process and induces anxiety, I feel much better knowing about risks to my health and being in a position to consider future precautions that I might take. I am lucky also to be in a financially privileged position – generous support from my parents has helped me to cover certain costs of follow-up treatment – which, I know, cannot be said for everyone, and which in our world (and, in particular, in the unjust world of US healthcare) makes a difference.

I’m trying right now, with gratitude and still some anxiety, to start to think about the future again. My sense of time was compressed in hospital – I could think only of the forthcoming hours. And I am still focused only on the day ahead. I have learned, I think, the true meaning of that hackneyed phrase, “one day at a time”. But as my confidence builds, I hope that I will be able to think more imaginatively about the arc of a life in front of me – a thought that has always given me excitement and happiness.


So hearing about Marfan in Pakistan; blacking-out and Skyping the UK; if I was a donut/you’d wanna glaze me; Gladys Brodsky and the NBA’s Isaiah Austin; doing CTs and MRAs; hearing about Ebola in the background and Loeys-Dietz in the foreground; through Baltimore and Megabuses – that’s how I’ve got here, to where I am now.

“So it seems”, as that Liam Finn song goes. “So it seems tonight”, as I sit here in the evening Sunday light, three weeks on from going into Mt Sinai Hospital, New York.


Update, in December 2014:

Last month, I had heart surgery in Oxford to remove the aortic aneurysm mentioned above.  I’ve thought quite a lot about whether to share this piece of writing.  I’m not usually one for baring all on social media.  But I want to share this so that I am able to be more open about this syndrome that is now a part of who I am – and because I hope the writing might be of some small use to anyone going through anything remotely similar.  I also want to share this to show that in a year that has been a happy one for me, there have been hard times, too.  So often we focus on successes and strengths, but not on our vulnerabilities.

For those that might be interested: the surgery went really well, all doctors have said my long-term prospects are good, and I’m looking forward to getting back to life as normal.  I’m grateful for the amazing medical support that I’ve received, and for my family and friends, especially Julia.  I’m lucky to have had such care and such love.

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4 Responses to So It Seems: Of Hearts and Hospitals

  1. Julia says:

    Kia ora e hoa, thank you for sharing. You’re really special in so many ways to people close to you and to people who won’t even know you such is the impact of the change I’m certain you are making. And even though you’re not an NBA prospect, you’ve still got some talents. Wishing you the best forevermore as you, Julia and your whanau traverse this journey. With some irony, it’s literally your big heart that is re diverting your tracks at the moment. Arohanui xx

  2. Lauren Dancer says:

    Dear Max,

    Congratulations on writing another excellent post. I’m so glad to hear that the surgery went really well, and life is returning to normal for you. Congratulations also, on joining the highly exclusive club of cool-people-with-connective-tissue-disorders. I thought I’d mention a few other people to you:
    • Abraham Lincoln (maybe); and
    • Me.

    Abraham Lincoln’s appearance and ancestry have led to suggestions that he had Marfan’s Syndrome, or a marfanoid disorder. The former US President had a strikingly tall build, and long hands and feet. Whilst without DNA testing, it’s not possible to confirm whether or not Lincoln had Marfan’s Syndrome or a related condition, researchers are confident that he did have a genetic disorder. An interesting article discussing the issue was published last year in the NYU Online Journal of Medicine: It’s not bad company to be in: Lincoln is today remembered as a champion for human liberty, and his witty quotes.

    The other cool person I mentioned was myself. I was diagnosed at birth with Stickler Syndrome, a connective tissue disorder which is related to your own. I’d like to say, that as in your case, someone looked at my long, elegant arms and legs and suggested the possibility, but unfortunately, the reality is that a doctor working in the hospital took one look at my face and diagnosed me. Rather than long limbs, Stickler Syndrome is characterised by facial abnormalities, including cleft palate (which I have); eye problems; and hearing problems.
    An early diagnosis and a really attentive mum meant that I received incredible medical support growing up, and few people realize that I have a genetic disorder.

    The cleft palate that I was born with badly affected my ability to speak when I was small, and I was utterly incomprehensible when I began primary school. My mum would helpfully translate my excited babble to my Grade 1 teacher at the end of the school day, and would drive me to regular speech therapy appointments. I hated speech therapy, which involved many flashcards and prompts to say “Sally sells seashells on the seashore”. So, one day, at the age of 6, I explained to my mum that that I had zero interest in learning any more about Sally and her seashell collection, and that I wished to murder my speech therapist. In response, my mum took me out of speech therapy, and enrolled me in Speech and Drama classes instead – leading to a lifelong love of theatre, public speaking and debating.

    I have low vision and cataracts in both eyes, but I now wear contact lenses instead of the incredibly embarrassing 2 centimetre thick lenses that I used to wear. I still have a tendency to get lost in small, well-mapped areas; to board buses heading in the wrong direction; and to fail in recognizing people at networking events; but I rarely have much trouble, and recently (just) met the legal requirements to obtain my first drivers licence.

    Like you, my sporting history is a record of enthusiastic participation rather than athletic prowess. But, I’ve discovered that it’s mostly a matter of finding the right sport – one that allows you to build up muscle and endurance. Whilst I was always pretty terrible at athletics, football and netball – I’ve discovered I’m pretty good at kayaking, rock-climbing and weightlifting.

    So, since I’ve had a little longer to get used to being a member of this exclusive club, I thought I’d pass on a few great tips that have been passed on to me over the years:

    1. Breathe

    I’ve never had to deal with the stress of worrying about a sudden tear in my aorta (or a “dissection”) but I am at risk of having a sudden tear in my retina (a “detachment”), which can swiftly lead to permanent blindness. I’ve been taught the symptoms to watch out for (black floaters in my vision that don’t move) and where to seek medical help. And, about once a year, I think it is happening. I panic. There’s a black spot in my vision, and I’m about to go blind. Then: I breathe. I realize that it is (i) just my own eyelashes; (ii) a smudge on my sunglasses that I have not cleaned in over 12 months; or (iii) nothing. And, I remind myself, that even if my vision ever does deteriorate, I’ll seek medical attention, and there is every chance (especially as technology improves) that surgery will be able to correct my vision. It’s just not possible to worry about your condition deteriorating all of the time – not when there are so many other things to do. So breathe: what matters is that right now, you are fine.

    2. Invest in great sneakers

    Don’t worry about the “flat foot” thing. You just need great sneakers with excellent arch support. They can be ridiculously expensive, but when you get a great pair, you will be leaping about like a gazelle and astonishing yourself with new levels of sporting achievement. I wear “Ryka” sneakers which are manufactured in Sweden and they changed my life.

    3. Listen to your doctors (but only sometimes)

    Doctors (particularly specialists) can give great advice, and can recommend all sorts of things which will make life easier down the track. If they suggest you need check-ups, should get regular exercise or invest in orthotics – say “ok great!” If they say you should not take dance classes because of the stress it might place on your joints – ignore them. Life is too short not to be dancing. And, you’re a fabulous dancer.

    All the very best,

    Lauren Dancer

    • mxharris says:

      Lauren, got this message a while back when I was in the middle of all the stresses of what went on last year, but have only had a chance to reply now. Thanks so much for writing this and sharing your own experiences. I appreciated your advice, too (and your kind words about dancing). Hope to see you again soon, wherever you are now (Timor-Leste?). – Max

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