Category Archives: Hospital
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. the following contains nudity… obviously
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. watch now…
“Eventually, you’ll move along, leaving me to live my life with an empty space.” I wrote these lyrics in 2008. I was gay, and had one foot in the closet – that means I’d only told one person out loud. I thought I was being so obvious at times, how could anyone not know, least of all you. I guess I was just so wrapped up in my own insecurities that I didn’t stop and take stock of the situation, and calmly tell you everything. Now, when I finally am – and finally sharing everything with the world, none of it matters.
I left school in 2004, a few weeks after I’d turned 18. I remember having a huge argument with a classmate once – couldn’t tell you how it started, or what it was truly about, but I vividly remember yelling at her that she didn’t understand – this was it for me. I wasn’t taking A Levels to get a qualification that looked good on my CV and helped me in the real world, I was taking them because school, at that point, was all I knew. “This is all I’ll ever have.” I shouted. This was the closest to a normal life that I would ever have. I walked out of the classroom to take some deep breaths outside in the fresh air to calm myself down. I’m allergic to sunlight, so that shows you how emotional I was – that I would go outside during the middle of the afternoon just to stand and breathe. I later cried in the arms of a friend. Crying because I couldn’t say the words that explained what I was going through. It had never dawned on me until that moment that it would all be over soon. Life was changing, and I didn’t know my place in the world. I was lost.
And then, I found him – my online friend. One solitary being who was so attuned to my every thought and inner feeling that, before I knew it, I’d fallen hard. I was so blind in love that I didn’t even see it until it was too late. It scared me. He was completely unattainable. Lived in a different city, born in a different decade. I had zero confidence and self assurance, but he changed me. I knew if I ever dared to dream of a moment with him, I needed to change all of that and learn how to live in the real world. A normal life, independent and capable. Before I could ever say those three words to him, I needed to first say those other three words to someone else…
25th April 2007
He said something really reassuring to me; it’s not the fact I came out that’s a big deal (hold on, we’ll get to that), but it’s the fact I managed to see my way through the, as I called it, cloudiness and realise I’m gay considerable quick.
It all started on Friday – well, it didn’t all start on Friday, but that’s when this chapter started. Me and him had, what we refer to as, “The Big Talk” last year and ever since then I’ve felt that if I were to come out to anyone it would be him.
When he visited me at hospital on Friday, I started what I’ll refer to now as “Coming Out” (clever, huh). As you’ve read, I’ve wanted to tell him since last year, and the fact that only four months later I’m now out to him shows just how accepting of myself I’ve become. So, when I saw him on Friday, I told him how I’d reconnected with my old friends from 6th Form. I wasn’t sure what I was going to do when they visited. A big part of me felt that I hadn’t seen them for so long, I wasn’t even sure if we’d still click like we used to. Well, we did, but something had definitely changed – it was me. I didn’t tell them, but I certainly didn’t hide anything. When me and “J” were exchanging witty banter (like the mature twentysomethings we are), she said that the male TV presenter was more my type than hers, and I agreed. Even something like that would have been unimaginable a few months ago.
So, when I started coming out on Friday, I side-stepped telling him and decided to focus only on the friends issue. Once I’d got as far as I could without fringing upon the no-going-back territory, I told him I was coming in for three consecutive days next week and would really like a game of Scrabble and a talk during this time. He came over on Tuesday and we picked up our game of Scrabble from a few months ago. All throughout, it was on my mind. Towards the end I noticed he would have to go soon. I hadn’t even begun to hint at what I really wanted to talk to him about. I told him I couldn’t decide if we should continue playing Scrabble or have a talk instead. He told me we should talk.
I hesitated, and backed out, but earlier that day I had written a song/poem about some of my feelings. I gave it to him and told him, if he read it, it would give me an incentive to talk on Wednesday. I regretted not telling him, but to be honest, I just didn’t feel like there was enough time or privacy.
Wednesday morning came around and I woke up with a feeling that today was the day I was finally going to come out – if only the world would have realised that too, maybe I could have done it a little earlier.
I almost didn’t. I mean, technically I shouldn’t have. I was put in a shared room for my treatment and when I finally got the room to myself, I used the last of my battery power to send him a text which said “raincheck” – only he didn’t read it, and I didn’t phone my stepdad to come pick me up early. He came over and that was that – I was about to come out to him.
I started tidying up, fluffing pillows, my heartbeat got very fast! Luckily, as I’d planned, my song/poem was a good starting point. When he asked what I was trying to say communicate in the song/poem, I slowly began, “I…”
I closed my eyes and rested my head in my hands. I couldn’t hear anything; I couldn’t see anything; I couldn’t say anything. I began to flash through all the recent events in my life, summing everything up into this one defining moment. After what felt to me like 6 minutes, I pulled my hands apart, opened my eyes and finished the sentence, “…am Gay.”
And that is how I came out. We talked – boy, did we talk! My throat was so dry by the end of it. But once, as I called it, pulled out the stopper, everything came gushing out. And he, as I knew he would, was perfect. He couldn’t have been more perfect. Everything that I had never dared speak before suddenly came passing through my lips and out into the world for everyone to see. So what only one person saw, that doesn’t mean only one person ever will. It’s going to be long, and it’s going to be very hard, but it’s also going to be very interesting. He asked me if I’m happy and I told him I was… because that’s the truth.
There’s a boy I knew, he’s the one I dreamed of.
Sound familiar? I mean, it happens to all of us! It’s only now looking back, I can see there were a catalyst of personal issues and events that lead me to feel this way about a boy. He wasn’t The One, he was just what my brain needed to survive at that moment in time. To keep on being able to tell myself that I had a reason and a purpose, because everything in my life was telling me otherwise.
I had been stuck in hospital-limbo for nearly three years – transitioning from paediatrics to, basically, the place where no one gives a shit. I had my transfusions in a dark room on my own where I would sit and be left to amuse myself for 6+ hours. If it wasn’t for my dad getting a job there, I may not have had meaningful human interactions at all. I’m making it sounds worse than it is, but honestly, when I finally ended my transition and found a competent doctor and was allowed to carry out my treatment on a special unit, that’s when I realised what I dark place I had been in.
During this time, I only had one person I could really turn to, but I couldn’t even tell him about the way I felt, so I wrote it down in a diary that I kept password protected. Here’s an entry I wrote on this very day, 8 years ago:
28th February 2009
Why is it that being gay is so not gay? It’s not that I envy the alternative or feel like I’m missing out on something by living with myself as I am. But I don’t get why homosexuality got given this pet name that means full of light-heartedness and merriment. I kinda see why the “nu-generation” did a complete three-sixty on that definition. In my books, it makes a lot of sense.
Gay is another synonym for shit.
They don’t have the same rights, they get treated differently, they have to actually come out and declare their sexuality and, I have very little reference from the other side, but getting a date is fucking hard!
That’s weird… I just realised I didn’t identify myself with them until the last part. Maybe it’s because I’ve never been treated differently because of my sexuality. It’s a little hard to be treated differently for something you don’t publicly identify yourself as! But I can draw reference from my disability. As for rights… I’m not passionate about politics. The world confuses me enough without bringing the Government into it. But maybe the real reason I didn’t identify with those first two points is because I have no jumping-off point for them and won’t do until… if… *slits throat* I have a “gay experience”.
I’ve never had one! Who the fuck would I have one with? My closet’s so confined I feel like I’m in a Japanese subway train, except instead of people there’s issues… sooooo many fucking issues.
I only want him. It’s true. The problem is I’m never going to have him. He’s there, I’m here – end of. And if… IF he ever, by the grace of God, actually ever makes it over here I know EXACTLY what will happen… just because I’ve swapped teams from my childhood, I can bet you it does not change any of the same old tired excuses.
I was being far too mellow-dramatic in my last post. I can survive without him. I have this weird feeling in some aspects I might even survive better. I wouldn’t have this nagging urge to stay home and socialise on my computer… but it’s not a nag. It’s a gift. I can turn to him whenever I want and he’s there. I have a better relationship with him than I do with my own family. In fact, I’m quite hostile to my family a lot of the times. It’s not their fault, it’s mine. I’m the one with the problem; I just can’t deal with it.
Why is being gay… so gay?
I remember being alone in that dark room having my hospital treatment, listening to music on my iPhone. A song came on shuffle: Nicest Thing, by Kate Nash. It’s not an especially sad song, or even a very good song – but at that moment, it was exactly what my brain needed. I needed to let out my feelings, to cry. So I thought of my nicest thing, and it made me cry.