tomsbody

I’ve never felt like I belong. I’ve always felt like an alien. As a child, I used to stare into the sky, at the sun, knowing it hurt me. I couldn’t risk looking away in case the aliens that dropped me off were wanting to find a way to send me a message. Reading that back, it’s the most insane thing I’ve ever shared on this blog, but it’s the truth. Living with Congenital Erythropoietic Porphyria is an isolating, unique experience I have trouble explaining, so any way I can express myself, I’ll try it.

I am a nudist, and last week I modelled nude for a life drawing event for the first time.

Being allergic to sunlight, the world would have you believe that if you’re a naturist not being naked outdoors, then you’re just being nude at home and that disqualifies you from being a nudist! I’m here to tell you that’s not the case. Nudism, naturism, whatever you want to call it, what it means to me is the freedom to express myself in a body which for many years (and still to this day) I have felt a prisoner inside of.

We all have our prisons that we may not even realise we’re living behind, but mine is more physical than it is mental. I’ve spent all my life with hospitals as my second home. And for as long as I have known hospitals as my second home, I have known being looked at.

Not as human, but as a patient.

A thing to be studied, to be exposed in front of doctors, nurses, poked and prodded, put inside of machines, having machines attached to me, put inside of me. Surprising as this may be to read, that’s still the case. It’s become a lot more familiar and less dehumanising, but there’ve been no advances in treatment, no improvements to my health, I’ve just somehow managed to keep on living well past what doctors expected me to.

With my body at a disadvantage, all I could do for many years was focus on making my mental aptitude stronger. When it came to exploring my physical attributions… well, that seemed like a path I didn’t have the liberty to take. As I transitioned from teenage, to young adult, and into adulthood – even typing that word “adult” doesn’t feel right. I don’t feel like an adult, because any time my illness has taken a turn for the worst, coming back from that is like hitting a reset button and starting off from your last save point. Truth was, I never used to plan for the future. I expected to be dead. Ageing just isn’t something I ever thought I’d do, okay! I don’t want it to sound morbid or godlike, but I am a realist as much as I am a fantasist, and I assumed I was going to die young. It’s taken many years for me to feel balanced, to feel any sense of confidence, to feel that I’ve reached a point where I can start picturing myself in the future, to start planning ahead. But also feeling I’m at a point where I won’t be setback by the unexpected. The more time I have, the more I realise how things we perceive to be important are actually of little importance. What’s important to me is to live a life without regrets, because the reality of never getting a second chance is more apparent.

Which brings us to being nude. In a room full of people. Some who knew me, some who didn’t. I actually find myself more confident and talkative being naked (as you can see in the pics). On the surface, people see my face first, and they might make preconceived judgements. But with everything on show, they might make those same judgements, but I think it forces those people to humanise me. It actually forces me to humanise myself, and I don’t feel like an alien when I’m naked. I feel like any other normal, attractive guy.

Bird Uncaged

How do you know if you’ve broken a rib – and, if you have, does it even benefit you to know that? I don’t think I’ve broken my rib, but I did feel something pop when I was leaning over the side of my bed to pick my laptop up off the floor. This is the second time in a month, and both times have involved a bed (although 90 percent of my life revolves around beds, so there’s nothing special there). If I have broken it, this would be karma for making light of my mum breaking her foot back in August! Trust me to break my rib the moment I reach the intersection of inspiration and motivation and finally decide to be productive and write something.

I started blogging in 2002, and before that I kept a diary from age 8. I’ve always had this need to indulge myself and produce writing, but I haven’t been writing a lot lately – in fact, you could say, I haven’t written anything in ten years. That’s not true, I have written the odd song or blog post, but the majority of my writing has been in those sporadic things called tweets that we’ve become all too familiar with. Ironic, that in sharing more writing than I’ve ever posted before, because of its short form nature, it had zapped me of my desire and passion to write. And I said to myself I wasn’t going to make this big song and dance about it, and preach that I’m better than everyone else, or that I feel less stressed, because it actually has been more stressful, not having this familiar, narcissistic habit to fall back on. This outlet of well-meaning but disingenuous validation and intimacy I would turn to as a means of boosting or stabilising my mood. For what once was a genuine interaction had turned into doing it for the sake of keeping up with everyone else. It wasn’t a decision I even made of my own accord, but I used it as a means to cut the cord. And by acting on that rib-not-breaking impulse of picking up my laptop to write when the urge strikes me, instead of when boredom consumes me, here I am saying I do feel better sharing my words like this once again.

20 Years Ago…

When I was born, my parents didn’t know there was anything different about me. And it took a long time for them to get any answers. It was by chance that a trainee doctor happened upon my mum in a hospital waiting room (as she had been for the past 18 months, back and forth, trying to get a diagnosis, being side-eyed for having a baby with bumps and bruises and scars), and fresh in his mind from studying, he knew instantly what condition I had. Congenital Erythropoietic Porphyria. Sounds scary. And the doctors didn’t make it sound any less terrifying. They told my parents I had a life expectancy of 10 years. Keep me away from bright lights, never take me outside, separate me from my sister and any other children, and enjoy the time you have.

Thankfully, my mum took none of their advice and fought for me to have the most normal life I could. 18 months later, I had my first blood transfusion. It was a steep, uphill battle, but by the time I was 5-years-old, my mum had found a good relationship with doctors, and I was being seen regularly by Dr. Norfolk and Dr. Holland. Still, the diagnosis of a short life plagued my mum’s thoughts, and any long term solution for treating the porphyria was put off. It wasn’t until I was around 9-years-old that my mum and doctors started having discussions about giving me a Bone Marrow Transplant. It took a further five years for this to actually happen.

On the 16th March, 1999, I went into hospital and didn’t see the outside for nearly three months. I had to have chemotherapy, and my sister donated her bone marrow to try and cure me of my condition. I very nearly almost died. There was a point when my family were brought aside and told to make the most of the time I had left. My sister told my friends at school, and she remembers hugging them and crying. Of course, I don’t remember any of this. The parts I do remember are all jumbled up and out of order. One moment that really sticks out in my memory is when Jill Dando was murdered and there was round-the-clock coverage on the news. Basically, TV had become my best friend. My stepdad would record lots of home footage of my sisters and dog so that I could see what was going on at home. But I found it too difficult to watch. I was separated from my family, and my friends. The nurses in the BMTU became my friends. Angie is still someone I remember fondly to this day. She would create word puzzles for me, and we would play the numbers game from Countdown. This was obviously when I was getting better, but in actual fact I wasn’t getting better. Turns out, the bone marrow transplant had failed. In my diary, I wrote that I didn’t mind, that I liked having something special about me, and that’s still the truth to this day.