The story of Joel
Why I’m Not a Hero
From what I’ve read, it seems the biggest thing people take away from their rare disease, is the new perspective on life that it brings them. Being appreciative of every day that we aren’t in hospital, thankful for the hours that we can forget about our conditions, and savouring every moment when we feel like a hero.
Except – I don’t want to be called a hero, and I’m going to tell you why. But before we get into that, here’s a bit about me.
The genetic lottery I won has given me the rare disease; Multiple Endocrine Neoplasia (M.E.N) Type 1. Now I won’t go into too much detail and provide every clinical fact of how M.E.N can affect different individuals, but the general pub-fact-quick-fire M.E.N round would go something like this;
- There are three distinct types handily broken down into Type 1, Type 2 and Type 3.
- It’s a genetic disease passed down from your parents, with a flipof-a-coin 50/50 chance of you getting it.
- It causes your body’s endocrine system – glands, to develop tumours. Glands which are affected produce an abnormally high amount of hormones, which as you can imagine, causes a variety of symptoms. (If M.E.N was a person, it’d be that annoying coworker who goes above and beyond their pay-grade doing more work than they should, not communicating with the rest of the team, and in turn ruining the whole streamline, inter-dependent system, that’s been doing just fine without them.)
Now I can’t talk on behalf of everybody with M.E.N, and am only qualified to tell you about my own experience, so here it is.
I was diagnosed, along with my younger sister (4 years between us), around the time I started A-Levels. Even though I was under 18, my care was handed over to the adult services – because of NHS budget cuts I imagine. Anyway, this meant having to be driven or catching the train into the arse-end of London every time I had an appointment, blood test or scan. Which are pretty frequent occurrences with M.E.N. I was bounced around from one consultant to the next, all of which needed ‘gentle reminding’ about what M.E.N actually was, at the beginning of every appointment.
But after scraping through my A-Levels, and being transferred to the absolutely amazing St. Bartholomew’s Hospital (fun fact: it’s the building Sherlock jumps off in the finale of Season 2), getting an incredible & consistent consultant, I got into University. Go me.
Then, around halfway through my second semester, of my second year of study. I was called into hospital for an unscheduled meeting with my consultant, who started showing me pictures of my last MRI scan. He poked and pointed at the black and white image, which I was told was the inside of my pancreas – although it could have been an x-ray of a Christmas turkey and I wouldn’t have known the bloody difference, but I digress. He continued explaining what was going on with my pancreas, I diligently listened until he explained…
“So unfortunately it has turned cancerous, and spread.”
Now, you know in a war film when a grenade goes off next to the protagonist head, and there’s that high-pitch noise accompanied with mumbled voices? That legitimately happened to me as he uttered that sentence. The line after that could have been “I’ll give you £500 if you hop on one leg and whistle the theme tune to The Office” and I wouldn’t have remembered a word of it. So as I stumbled out of that consultation room, I turned to my Mum and said the only thing I could – “well, f-“
Anyway, as I’m sure any person who has/had cancer will tell you, the world does this really selfish thing and carries on turning as normal as if you haven’t just found out you have cancer??? Weird right? This meant spending the rest of my second year;
- Organising deadline extensions.
- Worrying that I wasn’t going to wake up from my surgery. Or, if I was going to wake up, that it’d be right in the middle of them performing surgery.
- NOT taking advantage of all the student booze deals because they told me not to drink before my surgery. I was terrified of breaking this rule because, well, see point number 2.
Luckily I managed to get my deadlines sorted, threw together a basic plan of what University work I was going to do when, and shovelled down health supplements until I sounded like a human rain stick.
Then, in June of 2016, I went in for my Whipple procedure to remove the cancerous tumours from both my pancreas and liver. They knocked me out like a light and I slept the whole way through it. I woke up, bleary eyed, feeling fantastic. I know it may seem like I’m being sarcastic, but I woke up and felt like I could knock Tyson out in boxing match. There was no pain and my whole body felt incredible – I was on Cloud 9.
One word – drugs. Lots, and lots, of drugs.
As the painkillers wore off, it turned out that my body did not feel incredible, there was lots of pain, and Tyson could have exhaled sharply and knocked me to the floor. The recovery process while I was in hospital was steep, and easily the most physically demanding thing I’ve ever had to do. I’ll go into it in a bit more detail in the video, but after nearly two years’ post-op, my stomach muscles are still pretty weak, and pain attacks can occur completely randomly.
Okay great but stop self-indulging, get on with the it, why don’t you like being called a hero?
Well, a few reasons. Ones which I’d love to hear the rare disease community’s thoughts on.
For me, the term ‘hero’ detracts from the struggle and fight that every one of us goes through. When I think of a hero I think of Superman, or a Marvel protagonist – an infallible alpha-human who reacts impeccably in every situation, someone who was born with power and strength above and beyond their natural ability. People with rare diseases are the exact opposite of that. We’ve literally started off on the golf-course of life with a handicap, and we are not on track to be scoring a birdie.
It’s all to do with expectations. I know some would argue that you only get called a hero once you’ve earned it, but then what about when you have something else go wrong down the line. Something painful, and difficult, but not as painful and difficult as the thing that earned you that ‘hero’ title from. You’re expected to be able to deal with it. “Well if you can deal with that big terrible thing, then surely this is nothing but a bump in the road!”. Whereas if the same thing had happened to someone who had no previous bad experiences, they’d be showered with sympathy and affection. Sure, there is a certain element of truth to this concept, practice makes perfect right? Surely the more you go through the more resilient you become to it? Well, yes and no. As I’m sure you all agree, there are some days where you feel like you could beat Conor McGregor in a fist-fight because of the struggles you’ve been through. Then, there are others days, where if someone doesn’t thank you for opening the door for them, you feel on the verge of a breakdown.
Because some days all I’m doing, is managing. Just as I’m sure you are, and sometimes that’s all the best we can do, is just, manage. Manage the feelings of bitterness towards people who smoke for 83 years but die of old age. Manage the feelings of helplessness, because no-one else you know understands the hidden struggles that your condition imposes on you. Manage the anxiety that the smallest amount of irregular pain sends your mind into unhealthy spirals.
I can’t shoot lasers out of my eyes; yes, I could probably pump out a bit of concentrated radioactivity after the amount of X-Rays & gadolinium MRI scans I’ve had. Sure, I can be incredible on some days. But being a hero is about not making mistakes, having complete control over your emotions when things are tough & laughing in the face of adverse odds.
To me, it sounds like having inhuman responses, to the most visceral human experiences.
So, no. I’m not a hero, and neither are you. We are normal people. And that, is what makes our extraordinary actions all the more impressive.