Almost 19 months on from my diagnosis and life is seemingly the most back to normal it has been. I have just returned from performing at Edinburgh festival, like I have done almost every year since 2007.
But, this year was different as my life is now different and I had to adapt accordingly. Edinburgh Festival is a beast, a marathon of sorts and it has it’s own set of rules for survival for every performer (I just had to notch mine up a gear as I was now dealing with a heart condition and the side effects of medication on top of that), so no late nights or booze for me this year and a lot more Ubers!.
When you are diagnosed with a disease out of the blue, I'd say the main thing you are dealing with is the psychological aspect of being told you aren’t invincible, I know that sounds obvious but I’m pretty sure there was a very small part of me that thought I could be. Then out of nowhere you find out this is simply not true, your body is floored and in fact you have come scarily close to death. So you work through a series of emotions; sadness (feeling sorry for yourself), anger, fear (mainly of death). Eventually you work through these phases, and emotions balance out when you realise life does go on and you learn to adapt to your ‘new normal’.
The problem with ARVC, is the uncertainty that surrounds it, the clouds of mystery that not even medical professionals can give you clarity on. They are unable to predict how my condition will develop as it has only recently been discovered. Sadly there is no crystal ball to look into my future. Every individual is unique and the disease will progress in a different way and at a different rate. So you have to learn to read your own symptoms and get to know your own body.
At first this is really difficult, how are you supposed to recognise the symptoms? Anxiety manifests itself in all sorts of ways and you convince yourself that it's your heart and your condition, but most of the time (in my case) it is in fact anxiety. I realised (with the help of an energy therapist) that I was afraid of my heart rate going fast, so that in itself would make me panic. This makes sense as the last time my heart rate went fast for a sustained period of time, I ended up going in to VT and being defibrillated, but I am incredibly lucky that so far (touch wood) this hasn’t happened since. It is okay for my heart rate to go up as long as there is good reason for it and I guess not for sustained periods of time. So I made peace with this and started to build my confidence up with it.
In Edinburgh I was performing everyday in a small porter cabin which reaches sauna temperatures when full with bodies, I was singing, dancing, wearing a bear suit amongst other costumes in unbreathable fabrics. We came out of the room wet through with sweat, heart rate high. I was genuinely unsure if I was pushing my body too much, causing my heart damage that will progress my condition and be irreversible. That’s not to mention the adrenalin from the performance itself.
When I first found out about my condition and discovered that athletes had it such as James Taylor the cricketer, I felt so sorry for him because I knew how much harder it must have hit him, having to give up his career and his passion. I genuinely didn’t stop to think that this could actually be the case for me too. (Despite Equity telling me early on that I should keep it to myself as it could prevent me getting work.)
To be honest, I don’t know how I will find this information out, until I start to experience symptoms, I won’t know if I have caused any further damage and by then it could be too late. But I know that being a performer is what I was born to do and I have to continue to do it as it is my fuel in life and it keeps me sane. I just have to try to learn not to worry about it and to take very good care of myself before and after shows.
BBC News published an article about me which you can read here