• Heather Topf

An open letter to my organ donor

Updated: Jun 14

This is another post taken from my old, now redundant blog "the screenager". I wrote this entry a week or two before I had the transplant as a way of processing my emotions while I was getting my head around the fact that I was benefiting from someone else's death. While I totally appreciate that it brings a huge amount of comfort to the families of the deceased, it's an incredibly complicated relationship and something I still ponder a lot today.

Again, it's interesting for me to see how much my writing style has changed in the past three years. I think this is in part due to spending so much more time writing short-form content for social media and partly just practice - I write for different mediums pretty much every day these days - but I look at this and think how differently I'd portray the story now. Anyway, I digress. Jump in my friends...

I guess if you’re reading this, you’ll either be a friend (hello!), a friend of a friend, or someone who’s going through something similar. Either you’re in the shit scary pre-op I’m going to Google the world bit, or you’ve lost someone who wanted to donate recently. I can’t speak on behalf of all the people who’ve received some part of another human (outrageous I know), but I feel pretty safe in saying thank you on behalf of all of us. You can’t walk a mile in someone else’s shoes, but I’m living proof you can see it through their eyes.

You actually can’t say thanks anymore. Not even the hospital knows where it came from. You used to be able to write a letter and the hospital could pass it onto the donor’s family, but the practice has been abolished apparently. Or maybe that never happened, and I saw it in a film or something.

A fairly scary amount of my memories turn out to be made up or from an Enid Blyton book, but that’s a story for another day.

I understand why in this modern world of social media and cyberstalking it’s not allowed. Trust me, I’m the queen of it. Fancy someone who you met once and only know their initials, betchya I can find them. I probably shouldn’t shout about that – I’m still not thinking straight…

But even if I didn’t write my (100% unusual, I’m the only one on Facebook with my name) name at the end of the letter, it probably still wouldn’t take much to find this (very neglected) blog and contact me. It’s lucky I guess, but it’s unusual to need this kinda transplant for an injury and it’s therefore unusual to need one this young.

So, I’m going to say it collectively. To all those whose loved one might have been the one. To anyone who’s allowed the process to happen, allowed medical science to do its thang. To those who decided in their darkest hour to let their loved one save a life, or in my case, save some sight, thank you. Thank you, thank you, thank you.

I won’t know if I can see through it for another year, maybe longer. But already, the fractal light patterns, the light pollution that covered my sight and triggered the migraines have gone. Ask me again in a year, but right now, just with that gone, it was worth it.

I’m mega sad I’ll never know who gave me this gift. I will always wonder, who you are, who you were. The things you saw, the things you never got to see. I wish the little takeaway box full of antibiotics, antimycotic, bovine serum and the organ I so desperately needed to see again (yes, I read my notes, bite me) came with your bucket list – an instruction manual of things you wanted to see and do and never got the chance.

I think that would be fair penance, don’t you? You wanted to jump out of planes and see the world and learn to dive and be present at a birth and leave a random £100 tip and eat every country in the world’s version of pizza? OK, that we can do. In fact, that would be ace, it doesn’t stray far from my own. But equally, you want to watch every episode of Coronation Street and see every make and model of train from 1966-the present day? OK, that sounds like shit, but we can do that too. You were a Morris dancer?! Jeez, OK, I said I would…

I understand why they won’t tell me who you are. And as much as I think that’s diversity at its greatest, I still want to know. Have you met me? I’m mega nosy. But to anyone out there with a problem with race or gender. Age, political preference. Fat shaming, thin shaming. People who love classical, people who like psytrance. People who can dance, people who have the rhythm of a worm (bad example, they actually named a dance move after the worm), whatever. Put yourself in my position, 99.9% of you would take an organ if you needed it. From a totally unknown source. Isn’t that amazing, it could have been anyone's. I’ll never know, but I’ll take it because molecularly, we’re all the same. I think that’s something really fucking important to take away from this.

I was so freaked about the idea of this transplant. When they told me I was gonna need one I fainted for the first time in my life because of squeamishness. Hit the deck. Man, I came round thinking they were taking away my baby. I don’t have a baby…

From the day I found out the date, I had pretty major anxiety. Guilt and anxiety. I started having panic attacks on the reg. This feeling like someone had poured a kettle of boiling water over me from head to toe. Hyperventilating and crying and passing out on the floor. There were days where I tried to leave the house only to find myself unable, locked in the bathroom on my own trying to remember how to breathe. I don’t know why, but when I panic I hold my breath. I know that fading out feeling of losing consciousness and it makes me brace, brace, brace and hold my breath. I don’t know why, it’s a panic attack not a plane crash. But that’s what I do. There were days where my angel of a sister had to remind me to take every breath of the day, so I didn’t shrink into myself and hold my breath until I passed out. There were days where I couldn’t bear the idea of going outside. Jeez, days where I couldn’t bear the idea of being inside.

I don’t tell you this to make you feel sorry for me. But because the whole world keeps telling me I’m so brave. And I’m an inspiration and I’m so strong. But it’s bollocks. We live in a world of it’s ok to not be ok and airbrushing and social media posts of perfect worlds. And I want anyone else who has to go through something like this to know, I wasn’t ok. A lot of the time it was a battle to do life. But I’m mega lucky, I’m surrounded by some of the best people you could know. And the Topfs – they’re quite something to contend with I tell you (honorary Sorrel included, babycakes).

Those guys were my saviour. They forced me inside when I wouldn’t come, they forced me outside when I wouldn’t go.

They made me laugh and fed me fish fingers, they poured me prosecco when I was crying too much to do it myself. They dunked me in the sea, they made sure I saw the sun and saw the world and they told me what a wonderful thing this really was.

But all I could think about for a long time was, I had this date. This date for an operation where they would sew a small part of a dead person inside of me. And that person wasn’t dead yet. They were still fannying around out there, doing their thing, with no idea their world was going to end, that their family’s lives were going to change forever.

RELATED READING: The life-changing injury edit

Pity party over, I really made the most of the time before this happened. The recovery time for this particular transplant is looooong and I’m not allowed to do a whole lot of the things I love to do. Nearly all eye infections are water born so no getting in the sea – no surfing, no wakeboarding (is there even any point working for a wakeboard park if you can’t ride?!), for now, no washing my hair – though that I can cope with. Change in pressure is a real no no, so air travel and skydiving are firmly out of the window (no pun intended). Being upside down is out – no gymnastics, no handstands, no flinging myself about. I have to be mega careful I don’t get knocked in the eye, so no going out dancing (elbows in eyes are a real hazard when you’re my height..). Hell, for now, I’m not really allowed to raise my blood pressure so no exercise at all.

But man did I have a good May. Everyone should live life how I lived in May.

One brilliant day I was working from bed (I didn’t realise working from home meant literally in my dressing gown all day until I became self-employed, it’s fricking great), when my bestie and housemate came home shouting ‘Come downstairs! I’ve done something silly'.

Which as any best friend knows, can only mean something great has happened… Running downstairs I found her with a goofy grin cradling a second-hand surfboard – we’d been out a few days before on a friend’s board, obviously, it was time to make a couple of hundred quid investment on our own kit.

Naturally, I went and bought one too (a pointy one, totally out of my ability range, but I literally love it the most). We went and played in the water every chance we got.

I finally went and got current again skydiving, I had forgotten what an absolute joy jumping was (hey, jumping for joy, I just got it) and to be honest with you, how much fun just being on the DZ was.

I had a summer romance with someone who turned out to have the emotional intelligence of a cucumber and if I’m honest was a bit of an insufferable douche canoe about it, but before that made me a bit giddy. A guy who made healthy living look actually appealing and reminded me that I actually find someone with some drive attractive. Someone who lived a life I wanted to be a part of. We had a lot of fun, but probably more importantly it made me remember that boys aren’t the be all and end all, I’ve got a fabulous life all by myself, a partner to share it with would be the icing on the cake, the cupcake is all down to me baby.

I saw friends from Tignes and I went to London and I danced until dawn. I ate lobsters and drank prosecco and, in the run-up to the op, I ate quite literally nothing but pizza for Three. Solid. Days. I slept too little and I drank too much and if I’m honest I think I might have had a little too much fun.

Would I do it all again? Absolutely.

I was super worried that I hadn’t dealt with this idea of the transplant before the op. And I still am. Before I was so medicated and self-medicated (hello prosecco, don’t go anywhere my still oh so good friend!) and I was having a really hard time with the concept. I was totally freaked that I would wake up with this stranger sewn into my eyeball and I would just want to claw it out. That I wouldn’t be able to deal with it and I wouldn’t be able to do anything about it. It’s in there now, without it there is an actual hole in my eye. I’m pretty sure if they take it out now I die. And that would be a horrible waste of donor tissue now, wouldn’t it?

But now it’s actually done, don’t get me wrong, there’s still a huge part of me that feels that way. I have been on such another planet for the last week, I’m not sure I have even begun to come to terms with the fact it has happened. But I feel something else, something unexpected and something much, much stronger than the gross.

I feel proud.

I feel like I’ve got a newborn baby or something (I think, I’ve never had one of those, but you know, I’ve seen a lot of movies and shit). I want to shout to the world, look, look I had an eye transplant! Look at my stitches, they’re so mental! Look. Look what they can do.

RELATED READING: The life-changing injury edit

t I’ve gone all Phoebe about turning 30, there’s a load of stuff I want to do before my 30th birthday (and 1st eye birthday) next year. I feel like everyone should be in tip top physical shape once in their lives, it’s happening I promise ya. And I’m going to stick to that. Not just because I’m a stubborn bitch who does what she says. Not just because it’s a good thing to do. But more because of this precious thing I got given. It deserves to be looked after. My (quite frankly gorgeous) surgeon and consultant has banged on a fairly impressive amount about me taking the (fucking annoying amount) of eye drops properly and in a timely fashion. And I will. I will do so regimentally because it’s just too wanky to get given something like this and not to look after it.

And more than that, oh donor eye, man am I’m gonna show you some cool stuff.

I’m gonna take you to Bali to surf in the warm water. I’m going to show you the Northern Lights and Tokyo and Mexico. That hotel with giraffes and fjords and snow-capped mountains. You’re going to see Instagram worthy plates of food and Mamas from around the world’s ugly ass cooking that tastes like a dream. We’re going to jump out of planes and learn to kitesurf and hydrofoil. We’re gonna finally find an Acro Yoga partner (anyone?!) and go get ace at it. We’re gonna learn to climb and master the backflip and learn martial arts.

I’m going to take you on road trips and plane trips, on helicopters rides and on hikes. We’ll ride motorbikes and mopeds and road bikes and mountain bikes, all of the bikes! We’ll go to festivals and sleep in vans, we’ll cook breakfast with friends at dawn and learn another language. We’re going to travel and we’re going to tick every damn last thing off that bucket list (mine, not yours, it didn’t actually come in the box with the eye). I shall treat this body well, I will not date wankers, I will only take very carefully thought out risks. Not no risks, don’t be silly, where is the fun in that?!

So, thank you, donor family. For giving me someone else’s eye to see the wonders of this world. I was a little scared I’d wake up and see the world in a different way. If I’m honest, it was all a bit horror movie in my mind– I’d see the ghosts of the other person's life. Or something much less morbid, but really fucking annoying, like red through my new eye would be what I call green and it would be like living in the world of 3D glasses.

But it turns out I do see the world in a different way, but just in a way that makes me want to live life always like it’s May…

RELATED READING: The life-changing injury edit

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