12 years ago, last year, last week or even yesterday; it doesn’t matter how long ago it was when they died of an undiagnosed genetic heart condition, unfortunately, they’re still not here today and the pain of losing them most likely won’t have subsided. However as time moves on, you’ll remember what it feels like to feel again. To feel hopeful and optimistic and dare I say it, happy. Of course between these occasional positive moments there will be regular feelings of hopelessness and a deep sense of loss, but this doesn’t last forever.
12 years ago I was almost 14 and my aunt was 13. She died. She’d passed out many, many times from the age of 7. She’d given up almost all physical activity. Relaxing and ‘taking it easy’ indoors became the norm on warm summer days, getting over excited was cautioned against, surely not what you’d expect for children! Her blackouts became part of our normality, that was until one day when she would pass out, faint, black out for the last time, die for the first time. It didn’t matter what we’d call it, she just wasn’t coming back. A loved daughter, aunt and niece gone, leaving a whole family devastated, for a second time. We’d later find out that what went undiagnosed was a genetic heart condition, though it would be some time before we’d discover which, of the many it was. It may seem as though I’m making light of this truly traumatic time, however I feel I can only speak this way now because of time itself.
4 months later, school had finished that day for summer. I was due to perform solo on stage to an audience of 200 for the first time at an end of year celebration. I clearly remember walking on stage. I next remember holding my granny’s hand in a hospital bed (I was in the bed). I was so concerned that the nurses would be judging my dreadful costume and I was terribly confused as to why I was there. I later found out that I’d walked on stage, got most of the way through my performance before passing out, just as my aunt had many times before. It was happening again, my family thought. As a naive teenager I protested that I wasn’t the same, it had never happened before on stage, I was just nervous this time, it was the heat, I hadn’t eaten enough that day, I’d exercised and played sport a lot and it never happened me the way it happened to her – the adults in the family were having none of it!
4 weeks in hospital, during the school holidays followed as did many tests. It became apparent quite quickly that I had an irregular heart beat rhythm. I thought this was great – I know what’s wrong, can I leave now and enjoy my summer holidays please? NO. They needed to pin down which heart condition I had. I was bored. The sun was shining. I had too many leads keeping me within a short distance of my bed in the “old people’s” ward. I wanted to be out enjoying the sun on my holidays. I simply could not have the same condition as my aunt, I haven’t had a single symptom since. I haven’t passed out since. They can’t find a condition that I’ve got. Just LET ME GO HOME! But no, that treadmill test was the only one that faithfully highlighted that my heart beat was irregular. The weeks went by, frustration mounted and then I was informed – You’re having an ICD implanted. A what now?
No, they hadn’t figured out what was wrong with me. They just decided that having this large box put in my shoulder was the best precaution they could come up with to allow me to live a “normal” life. To say I was reluctant would be an understatement. I had no choice. My parents and the doctors were in control as I was not legally old enough to consent. As a hormonal teenager, I was not the most pleasant person to my parents at this time. They did this to me and there was ‘nothing wrong with me!’
The operation went ahead. My first t-shirt afterwards had to be cut off as I couldn’t raise my arm high enough to remove it. I spent the rest of the summer living in vests which were easy to remove and scarves which covered the wound plaster. To the dismay of my parents I was on my bike the day I returned from hospital – I could only reach one handlebar (it wasn’t the best decision I’ve ever made).
Rumours of me almost dying had just barely subsided when I returned to school that September. Though it was not the same, I was no longer allowed to take P.E as a GCSE option, I wasn’t even allowed to participate in any of the P.E lessons – this was incredibly difficult for me to deal with – I was competitive and had always loved P.E. Outside of school when I played football with my friends, I was rarely passed the ball now and no-one dared to tackle me on the field. My whole world had changed. Oh and I had this lump in my chest and a horrid scar as a result of an infection when healing. Life had reached a new low.
18 months later I was figuratively speaking, dragged, to see a psychologist. I said nothing for the first two sessions because ‘I was fine and didn’t need to be there’. In the third session I just cried, in the fourth we finally started talking. I hated going every week. However, with the power of hindsight and perhaps a dash of maturity I can say that those sessions were one of the most beneficial things to aid my recovery. My body had long healed. My family were more than supportive. But my head was messed up after my world had been shaken harder than a magnitude 10 earthquake. The sessions certainly weren’t an instant fix but they did a lot to help.
I eventually got a diagnosis. CPVT. Catecholaminergic polymorphic ventricular tachycardia, what a mouthful! I remember being relieved – who would have thought? It meant that all of this hadn’t been for nothing. Nothing really changed with diagnosis other than having peace of mind. I continued to be treated medically in the same way – I just knew what I was being treated for now. My mum and granda also had the same condition and mum would later have an ICD fitted too.
3 years after having my ICD implanted, I was sat in an English lesson and I began ringing like and old mobile phone. I didn’t know at the time, but my battery was low and I was due for a replacement. It went smoothly and the scar was much more incognito than the first.
Life went on as ‘normal’. I was now used to having this thing in me. I knew how to field the questions that came when wearing a vest or bikini in new company. I knew what to say when asked why I wasn’t drinking that jagerbomb. I knew what to say when everyone else was going scuba diving and I was sitting out. I still struggle to communicate just feeling tired for doing nothing. I still struggle to express that I physically don’t have the energy to have a shower right now. I still struggle.
At some point in 2015 I first attended the gym with a friend that knew me well and all I’d been through. They talked me through the equipment and how to use it. They understood how to push me just enough that I was pushing myself but fully understood the difference between ‘my heart can’t do this’ and ‘I’m just not trying right now’. These gym sessions were a far shout from the adrenaline junkie roller coaster rides and roller blading I loved in the past but despite being new to me, I felt like I’d missed them. Over the next few years I began going to the gym, attending gym classes, playing recreational netball, I began regularly riding my bike – I was beginning to enjoy many of the things I had done before my life came crashing down. I even took adult swimming lessons and had a surf lesson. I moved away from home again and began commuting to work on my bike. Until one Friday when that old mobile phone sounded again. I was due another battery replacement.
I lived alone over 100 miles away from family; how would I cope? is how some people might have felt. For some reason I felt I could do this on my own this time. I mean I’d mastered the side plaits. I’d get the bus to work, what else would I need? I scheduled my operation for the beginning of the 2 week Christmas holidays. I returned to see my family over the same period and my, my, wasn’t I glad. There were many silly things I’d forgotten that I’d need support within the seven and a half years since my last operation. Though nothing so defeating to prevent my from returning to work as normal after Christmas. A kind colleague offered me a lift for a while and before I knew it, I was back to riding my bike to work again. That first cycle was difficult. The first gym class was worse! Where had my fitness gone?
I vividly remember fighting to the end of the 11minutes it took me to run 1km on a treadmill. After all the effort I’d been putting in the gym before my operation, my PB’s seemed like they’d belonged to someone else. But I needed and wanted so badly to get back to that level. Every gym weight felt like 10 tonne! I gave up. I’m not a defeatist person, I turned to a new challenge. A year prior my mother had run two 5km races. She is not into exercise and had never done this before. I was 20 years younger and struggled to run 1km; yes I have a heart condition, but so does she! I could do this! (It never once felt like I could). But I did! I trained and I found it boring and difficult but I finished my first 5km park run in 33:25 and I even enjoyed! Or at least I enjoyed it enough to do it again. This time I did a 5km Santa Run in aid of CRY and raised £220 as a result.
I’d go on to do 5km park runs twice monthly, summit Angel’s Landing in Utah, USA in 30+ degrees; climb Croagh Patrick and Culcaigh Mountain at home. And finally after two failed attempts, (one due to weather, one due a shock from my ICD) climb Mount Errigal. By this point I was back attending gym classes and soon to be hitting my late twenties, I began thinking about my ‘before aged 30 bucket list’ – triathlon was still unticked.
Yesterday I completed a novice triathlon! It felt amazing! It was the first time in longer than 12 years where I truly felt the zest for life that I guess I’ve always had but that had somehow got a little dusty. The training was difficult. There were many a days when my heart just could not do it despite having trained harder at other times. These are the days when it’s easy to feel hard done by and get a sense of feeling sorry for yourself. But that achieves nothing. It doesn’t make you feel good mentally or physically. Today is a bad day but this evening or tomorrow will be better.
I’ve never spoken publicly about my heart in this way before; but something in yesterday inspired me. After 12 years I wanted to share my story. It’s hard, it really is at times, but that’s a side I only barely let my family see. They know I’m more than my heart condition and I know I’m more than that, even when they have to remind you to think of all that you can do and have done when you’re jealous of their planned Thorpe Park escapades.
Having a heart condition sucks. There will be hard times, but there is also pretty spectacular times. It’s important to just pick yourself back up and let the heart keep beating!