I was 11 when I first blacked out, under water, in a primary school swimming lesson. I was a strong swimmer and determined to finish ahead of the girl next to me. As I dived in, I remember thinking “I’m going to beat her”. I got as far as the lifeguard and woke up pool-side, wrapped in tin foil, with my teacher standing over me, having administered CPR.
That was the first sign of my rare heart abnormality, also known as sudden death syndrome. It refers to a number of different cardiac diseases that together affect around 1 in 7,000 people. All I recall about that first attack was vividly picturing my little sister, Bronagh, and the sight, as I came to, of school friends being ushered out in tears.
For months the doctors were at a loss as to what was wrong with an otherwise healthy and sporty pre-teen. I was pretty relaxed about what had happened – I was 11, after all – but I became more aware of myself. Once, during a school test, I looked down and felt my heart race so rapidly I could almost see it beating through my jumper.
It was four months later that my parents received a letter confirming a potentially fatal heart arrhythmia. We travelled from the town of Enniskillen, Northern Ireland, where we lived, to the Royal Victoria hospital in Belfast. I remember being stuck in a hot waiting room alone while my cardiologist told my parents that he suspected Long QT syndrome, one of the most common of the diseases labelled as a sudden death syndrome. His diagnosis was backed up by an eminent colleague in Italy, who recommended that my parents and five siblings be tested to determine who else was affected by this genetic condition. Three of my siblings, plus my dad – the carrier – tested positive, but I was the only high risk one at that time.
Long QT is unpredictable. You can go undiagnosed your whole life, then something normal, like the pop of a toaster or an alarm clock, could trigger an event. Mine seems to be linked to physical exertion, which means I haven’t swum or played contact sport since 1998. When I was 14 an implantable defibrillator (ICD) was put in my chest – an operation which I was stubbornly against, until Mum bribed me with a Kappa tracksuit. The ICD was matchbox sized and clearly visible below my collarbone; a bad look when all I wanted was to wear spaghetti straps to the local discos.
I moved to university in Manchester when I was 19 and chose to explain the ICD to new flatmates by claiming I had been shot. It seemed a better ice-breaker than “I’ve got a dodgy heart”. My second attack happened on my 21st birthday. I had been to a festival and had had a bath before bed. I dreamed vividly of someone stabbing me in the chest and was telling Mum about this over a cup of tea. I remember the Hollyoaks music in the background and the next thing I saw was my mum and brother, white as a sheet, staring down at me, and my dad on the phone to the 999 operator. The ICD had kicked in, restarting my heart.
The irony was that I had bargained with doctors to remove my defibrillator if I hadn’t used it by the time I was 21. Now, I have it changed every seven years. I’m 29 and don’t think about my condition too much, although I have never had my hair cut above defib-length. My fiance, Ryan, worries about me a lot. He once turned up at the school where I teach because I wasn’t answering my phone.
When I was younger I lacked the emotional intelligence to understand the guilt my dad feels about Long QT, but I don’t blame him. Three of us have ICDs now, and we are just glad we were diagnosed; we are very lucky in that respect. I take medication daily, but am easy-going by nature. I just accept that this is how my cards were marked. I imagine I will feel differently when I become a mum. I always remember my doctor telling me “You will never be hospitalised with this”. You either make it through an attack or you don’t.
• As told to Deborah Linton
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