My Story

I was diagnosed with Alport Syndrome when I was eighteen months old. It’s a rare genetic kidney disease that causes kidney failure, hearing loss and eye abnormalities. I wear hearing aids, had lens replacement surgery when I was eighteen, but have ongoing problems with my macula (central vision) and currently there is no cure.

Let’s pretend you’re at a party… and you don’t have a choice, you just have to be there… So you’re with your friends, having fun, getting loose and throwing mad shapes. All of a sudden, amid the shuffling bodies on the dance floor (empty lounge), someone’s eyes lock onto yours… their face warps as they squirm through the crowd towards you and when they arrive well-within your comfort zone they say, “Hi, I’m gonna punch you in the face, but I’m not gonna to tell you when I’m gonna do it.” They then scurry backwards and vanish amongst the oblivious disco dancers, leaving you wondering what the hell you’re going to do about it…

So… what do you do?

A: Escape the party and hide.

B: Put a costume on, pretend to be someone else and make out it’s a normal thing to do at a non-fancy dress party.

C: Stay put… pump your chest out… hold your head high… gather your friends… tell everyone what the cretin said to you… dance like a lunatic… make more friends… live for the moment… cherish your loved ones… grab life by its big hairy balls… do a handstand in the kitchen… do the limbo naked… do whatever you want to do because any minute now some twisted maniac IS DEFINITELY going to punch you in the face…

I chose C.

Because that’s pretty much how I’ve felt my whole life… Ever since I was old enough to understand that I have Alport Syndrome.

When I was a child, a renal consultant once said to me, and I quote:
“It’s a bit like a time bomb really, no-one knows when your kidneys are going to fail.”

Until now. 

On 3 December 2018 (My birthday!), my consultant told me that my kidneys will fail within two years, maybe even by the end of 2019, at the rate at which they are declining. 

Throughout my twenties, I struggled psychologically with the concept, because of the uncertainty of when they would fail. Most of the choices I’ve made in life have been orchestrated by sub-conscious effects of A.S. Although I find it slightly daunting, and even though it’s not a definitive deadline, it’s also refreshing to finally have a timescale on when my kidneys might fail. I’m very fortunate that my hearing, eye sight and kidney function have been closely monitored my whole life, and I’m extremely grateful for that. 

So, I guess it doesn’t actually feel like a punch in the face… more like a constant, annoying and uncontrollable prod in the forehead.

Nonetheless, I’ve hit some pretty low points in my life. During my first year of university, I sank so low I wanted to either hurt myself or hurt anyone who came near me! And at the time I had no idea why, I was in a hole and I couldn’t get out… Not very easily anyway. The weirdest thing is, it can happen when everything is going just fine! I had a great job working as a Student Brand Manager for Red Bull, I was on the committee for the Solent Shredders ski and snowboard club, which I loved, I was challenging myself and learning everything I could about T.V and video production… and succeeding at it. Even with lots of positivity in your life, sometimes nothing can stop the dark cloud that consumes you when you enter the tunnel of negativity. Looking back now, I know that it was caused by loneliness. I felt like I was the only person alive with Alport Syndrome. I resented everyone around me for being so young, naive and carefree, but I didn’t even try to tell anyone about it. I was disconnected, struggling to adapt to educational life, having spent 6 years in the ‘real world’, and I even found myself resenting people for not having anything wrong with them!

There was a bitterness bubbling away inside of me that I couldn’t seem to get rid of. 

I don’t expect anyone to understand what’s going on inside my head because of my kidney disease, but now and again I just feel like I need someone to ask more, show me that they’re trying to understand and show some empathy. I’ll never be too embarrassed to talk about it… not any more. Accepting what I have to live with has been the hardest thing for me. It often makes me wonder what I could achieve if I didn’t let it get in the way, but I have no choice sometimes… with all the blood tests, hearing tests, urine samples, eye surgery, hearing aid repairs, medication… more problems with my eyes, better go back to find out what’s happening now… what’s next? Hurdle after hurdle and the thing is, it’s never going to settle.

For me, the only way out of the pessimistic cave is to start talking about what’s going on upstairs, to work hard and play hard. I have to keep busy and distract myself as much as possible from the gloomy cloud of anxiety! Sometimes finding a sensible balance has been impossible, but that’s where being adventurous comes into it.

This story isn’t all doom and gloom, I promise!

When I was at school, I told myself that we have two choices in life… to live in fear or to live for the moment. I’ve carried that mentality with me for many years. Now, with more life experience, I understand that it doesn’t have to be one or the other. Instead, if we acknowledge our fears, we can control them to motivate ourselves to live for the moment.

When I shove all that faff to one side and look at everything I’ve got… I have all my limbs, I can still see and hear, an incredible family who support me, friends that would offer one of their kidneys without question, hobbies that make me feel alive, a job that takes me all over the world, skills that will stay with me forever and the ability to do most things I put my mind to. It’s definitely not all bad!

Extreme sports and adventures are my saviour.

The natural progression in sports, and the psychology behind why I feel the need to push myself more and more fascinates me. It’s absolutely vital for me to spend time chucking myself out of a plane, cruising through some silky powder on my snowboard or tearing through the trails on my mountain bike. Even when it all goes wrong and I smash myself up, I will always go back to that sport, till the next time I smash myself up! It’s a temporary fix where I feel totally in control of my destiny, and if I mess up, I’ve only got myself to blame. It’s the only time I can test myself while doing something I 100% truly love.

As for travel and adventures… I think being outdoors and exploring is one of the best ways for anyone to recharge their batteries. Escaping the stresses of ‘normal’ life and all the trappings that come with it is so important to me. Holidays are OK, if that works for you and resets your computer then great! I just find that throwing myself into the unknown and seeing where I end up is the only way I can learn about myself.

I try to look at my life in a positive light as often as I can, because it really makes me feel happy to be alive. Hopefully during any rough times ahead, I can put the reasons why i’m feeling grotty into perspective and cut the negativity short before it gets dangerous again. I somehow manage to make myself forget that Alport Syndrome comes with 3 separate challenges sometimes. It’s about keeping busy and having a goal in mind that keeps me distracted. I aim to continue to share my story, adventures and progress and hopefully connect with others who have the same lust for life!