A few days ago marked the 10 Year Anniversary of no longer having a tumour on my spinal cord. I haven’t blogged for a long time, but it felt like perhaps this was worthy of me dusting off my fingers (?!) and typing one up.
Let me tell you the quick history (sorry if you know me, and I’ve already told you TEN THOUSAND TIMES or you’ve read previous blogs on this. Buck up though, repeating it isn’t as bad as TUMOURS are, so…)
Toward the end of my second year at uni, I started getting severe back pain. I went to the doctor. They gave me co-codamol. This dance went on for months – I’d go back in more pain: they’d prescribe more codeine. Then, I started not being able to wee properly – I’d have to sit there for 10 minutes before it would trickle out. Next, my left leg starting to give way underneath me – in Asda, in the pub, whilst just casually walking along. It happened once in the gym so severely that I went to A&E. The male doctor just told me ‘to just have more confidence when you walk’ (I really didn’t like him, tbh).
After almost a YEAR of endless A&E, doctors, physios, walk-in clinics, I finally sat in my GP’s office and told her I wouldn’t leave until she DID SOMETHING ABOUT IT. She sent me to A&E for an MRI scan that evening. The next day, a doctor sat on the edge of my bed and told me I had a tumour on my spinal cord compressing my nerves. I needed an operation to remove it as soon as possible, but it was routine and I’d be out in about 5-7 days.
Except, it didn’t really go to plan.
I woke up paralysed – being mis-diagnosed for so long had enabled my spinal cord to get so swollen that, honestly I WAS IN A REAL FUCKING MESS. I was in hospital for over 3 months, left with a wheelchair and crutches, and told I’d likely never walk unaided again.
Today? Today I can walk, unaided, slightly wobbly, and bad in the rain (and don’t even get me started on snow)… but still, walking. It literally feels like a miracle – sometimes when I’m walking along I genuinely look at at the sky and whisper ‘thank you’. I remember once during my recovery making a deal with the universe: they let me walk again, and I promised to live the fullest, bestest, kindest life I could. The rational side of my brain doesn’t believe that ‘did’ anything, but I still try to keep to that word, just in case.
In reality though, I never recovered ‘fully’ – I can only walk very short distances, I can only stand for very short periods of time and I am in horrible muscular and neuropathic pain. My body sometimes feels on fire, sometimes like I’m in ice cold water and often like I am dragging the entire thing through extremely thick treacle.
But, like all incredible shitty things, I think there really always IS a silver lining, and it’s generally what your shitty hand has taught you. So here’s 10 things I’ve learnt along the way (because it’s been TEN YEARS and I like symmetry).
The Human Body is INCREDIBLE
Here’s the thing: I don’t meant to state the obvious, (this is the coldest take in town), but spinal injuries are the Absolute Pits. The consequences are life long, and your central nervous system controls EVERYTHING, so when it’s damaged, oh boy is it Not Fun. It’s not just that I have back ache – everything hurts – I get headaches, back ache, stomach ache, pelvic floor pain, leg pain, it’s also fucked up my digestion, given me sporadic heart palpitations, fucked my neck. Not to mention, ten years on and it never gets any less terrifying that I regularly, for apparent no reason, lose feeling in various parts of my body. I often think that if people could exist inside my body for a week they’d a) be in extreme shock about how fucking awful it feels and b) (as a consequence) be a million times nicer to be forever more because they’d finally understand my daily hellzone (which would be lovely, actually).
HOWEVER: no one thought I’d recover. Whenever I walk in to see my surgeon for a check up these days, he literally BEAMS at me, like I’m his prized patient. I was not meant to recover to the extent I did. I consider myself INCREDIBLY fortunate for every second I get to stand up and walk. I still vividly remember the first stand up hug I had after months of lying down. I will treasure every hug I have forever more (real life friends: this is why my hugs are often uncomfortably long. I’m not sorry). In short, every now and again, the human body proves itself to be incredible.
You’re more capable than you think you are
A lot of people say to me ‘Oh I could never do what you do’ or, my personal favourite ‘god I would definitely have committed suicide if I was you’ (they always say it like it’s a joke BUT HUNS, IT ISN’T FUNNY) and here is The Thing: You just get on with it. It becomes the new normal. In part because you don’t really have a choice, but mainly because the human survival instinct is incredibly strong. So don’t sell yourselves short guys, YOU TOO COULD SURVIVE THIS! And just like Daredevil, it increases your senses in other areas. MY improvements are: I am an incredible judge of character, I have good hair, and most importantly, I am MUCH funnier now. And really, what else is there in life?
Balance is Everything
I am very lucky – I love my job. It’s a rare and wonderful thing, which I try to never take for granted. BUT I also love my life, and really, if you’re ever lying in hospital for months on end, you really AREN’T thinking about your job. Sure there were times where I wondered if I’d ever be able to have a job or contribute to society or feel USEFUL – but most of the time my focus fell more towards friends and family. This is the one thing I wish I could find a way to truly explain to people. I see so many people in London pour all their energy into their careers, often cancelling or missing plans with their friends or family to stay in the office, and I just wish I could find a way to tell them in a non patronising way, that they might regret that decision. Work is great, LIFE is better.
Shame turns to Pride In Time
When it first happened, I felt deeply, painfully ashamed of my body. It had let me down. It was ‘embarrassing’ now. It no longer walked perfectly or worked perfectly. I hid it at every given opportunity. I was terrified to tell employees in case it made them fire me, or lose trust in me, or treat me differently. Somewhere along the way, and I don’t even know how, that shame turned to pride. I suddenly realised what I’d overcome, and just how strong that made me. I still have bad days, but I no longer feel ashamed. It has undoubtably made me a better human.
Sitting Down is Great
Look, I miss going for long walks, going shopping, riding a bike, playing tennis, as much as the next person might. But BOY have I perfected the art of having fun whilst sitting down. Here are some amazing things you can do whilst sitting the fuck down: drink tea, drink alcohol, flirt, laugh, snack, eat incredible meals, go the theatre / cinema / bar, paint POTTERY, do embroidery (I was going through a phase), BUY STUFF OFF THE INTERNET, start a podcast. Sitting down can be absolutely rad when you give it a chance. (Btw if this doesn’t make it clear, I AM STARTING A PODCAST IN T MINUS 2 WEEKS!).
Never take anything for granted
Sometimes I dream of having the mindset I have today, in a healthy body. It’s wild how much I took for granted when I was healthy. Just leaving the house, without a plan, without a worry, in whatever shoes I wanted. But you can’t have both, and now I am truly delighted by every ‘good’ day I have, it makes me appreciate all the good things and people that little bit more.
Being a Late Bloomer is A Okay
I spent most of my early to mid to mid late 20s as a fucking mess. I was deep in mourning, had savage PTSD, was having constant panic attacks and I just didn’t have a support network around me. I felt incredibly lonely. In honesty, I only really started to feel happy again around 27. Because I feel like I lost a massive chunk of time, I’ve always felt like a huge failure – way behind everyone around me. But everyone goes at their own pace, and if we all had the same timeline imagine how FUCKING BORING that would be. Right?!
Dreams can Change and it isn’t The End of the World
My parents were actors and we had an extensive film collection so I grew up watching Musicals from black and white to colour – 42nd Street, Kiss Me Kate, Top Hat, Gigi. My biggest dream was to be in musicals on the stage or screen. I almost dropped out of uni to apply to drama school at one stage, but had decided to wait until after uni to reconsider my options. When it happened, all those dreams went out of the window and I never thought I’d amount to anything at all. But, somehow, I now work in the film industry – just in a completely different area of it. It wasn’t my Dream dream – but it’s a pretty good second.
The Disabled Community is fucking amazing
I am part of quite a few disabled online groups – it sounds kinda cheesy but they’re genuinely one of the most extraordinary group of humans alive. They’re dealing with all the normal stuff – relationships, friendships, family dramas, moving house, work challenges, financial worries – but all with the backdrop of whatever their health challenge is: chronic pain, fatigue, accessibility issues, etc. Sometimes, when people are dicks to me, I wish they’d remember that whilst they’re being mean to me, there’s at least 20% of my brain saying to me ‘you’re in pain, why is your arm numb, you should lie down and sleep’. The shit disabled people have to deal with just as a baseline, in my mind, just makes them all so amazing with all the shit they’re achieving ON TOP of that. They’re also the kindest, most inclusive bunch of humans alive. (But that’s just my opinion…)
Diversity Conversation Excludes Disabled People
My final point! The last 10 years have been truly amazing in terms of diversity – which is fantastic, and I’m not in any way knocking it. However, it feels like disabled people are still regularly overlooked within diversity discussions. We still seem to struggle to include them in mainstream media and conversation. I guess for my next 10 years, I’d like to do more myself to close that gap. And I encourage you all to as well!