I’m reading a pretty stellar book at the moment called Gut by Giulia Enders. As an IBS sufferer, it has been hard to not see the body as the enemy, punishing you for what you eat, what you think, what you can’t even control.
Giulia Enders does a wonderful job of selling my gut to me. I think I can go as far as saying that I feel rather proud of it now, impressed with all it can do. It makes me appreciate how much my body has been through in my late 20s, and the fact I’m still functioning – mentally and physically – is pretty wonderful. Thanks body.
However, I’ll admit that over the past few years, there have been times when I would say my body had betrayed me. It was as if my body was determined to ‘build some character’ before I hit my 30s.
It started, I think, with me going deaf.
A persistent infection in one ear and then the other, the subsequent bouncing from doctor to doctor while they argued over the current advice for ear drops in perforated eardrums. Eventually, a long overdue appointment with a specialist revealed a pocket of skin trapping infection in my inner ear. I was told it was eating me alive; it had already devoured a portion of my bone, and could eventually travel up to my brain. The word ‘meningitis’ was thrown around as both a worst case scenario, and a very probable outcome unless I underwent surgery.
It’s very science fiction, I would tell people, this infection that is eating me alive.
Holy shit, I would tell myself, this is scary.
During the months that followed, I was just a name waiting on a long list. It was at this time that I lost my voice. Living with my Gran at the time, she pulled out a great dusty tome and flicked skillfully to a page titled ‘Laryngitis’; she diagnosed me on the spot. My doctor peered down my throat and confirmed it the next day.
For an entire week following this diagnosis, I couldn’t speak.
Communication became a game of charades, wild gestures and exaggerated facial expressions. It was something from a comedy sketch, me flailing my arms for attention, mouthing greetings to Neil’s housemates as we passed them in the hallways.
Peace at last, joked Neil.
When my voice started to return, words were Mickey Mouse squeaks or croaky whispers. I hardly recognised the sounds coming out of my mouth, and I was too embarrassed to sing for months.
By the time I had the surgery on my ear, my voice had returned. A luxury of sorts to be able to voice my pain, even though the human response to suffering is fairly universal: ouch, that bloody hurts.
Next, I lost my sense of smell and taste; these things came in tandem. Worried I had Covid, I took test after test, but the negative result suggested something slightly more complicated. When the migraines, nosebleeds and breathlessness joined the list of symptoms, I went once again back to my doctor, who referred me on to the familiar halls of the Ear, Nose and Throat department.
I was attended to by an immaculately dressed doctor wearing higher heels than I had ever been bold enough to wear. Balancing on those shoes like a stilt walker, she expertly slid a camera up my nose and down my throat. My larynx looked just fine; all healthy here, I was told, as I watched in awe as it spasmed on the video screen.
She said the problem was a deviated septum. Surgery might fix it, or it might make it worse. Deciding I needed a break from waiting lists, I opted to be discharged. Apparently most people just learn to live with it anyway, accepting mild discomfort as the new normal. There was both defeat and relief in the thought of it just being there; this was my situation to come to terms with, yet thank goodness it wasn’t anything worse.
Just a bit of a wonky nose, I told people. Character building.
Finally, just when the dust had settled, and I thought what could only be a family curse had finally lifted, I lost my sight. The culprit this time: an enthusiastic puppy claw to the face, which had scratched the surface of my eyeball.
The abrasion ran along the line of my eyelid, meaning any movement was causing irritation. Quickly referred to the hospital by a concerned optician, I was unable to see by the time I arrived – pain and fluid fusing my eyes closed. Neil guided me through the maze of hospital corridors, until eventually I was able to leave with a paper bag full of prescriptions. My sight still hasn’t fully returned, everything I look at is obscured by a blurred shape – like there is something not quite transparent blocking my line of vision; a ghostly apparition. But hey, it is still early days yet.
My instinct, of course, is to blame my body for putting me through so much. When I’ve lost count of how many doctors appointments I’ve attended, or how many times I’ve lost myself in the labyrinth of the hospital. But there’s a quote I consider when I’m feeling low about these facts: hospitals are where people go to get better. Goodness knows who said it – perhaps a friend, perhaps a more famous voice of wisdom. But they are right. I’m grateful for these appointments that are available to me at such little cost. And I’m grateful for my body for getting me past each hurdle.
To grasp at the silver lining of the past three years, I remind myself that I need to treasure the experiences I have had. I could probably go as far as saying they have humbled me, given me opportunities to grow and learn…
How difficult it is to talk with a group of colleagues when you’re struggling to hear the conversation bouncing from one person to the next. To ask a customer for their name so many times that you eventually need them to write it down. To fear the softly spoken because you know you’ll be having to guess answers to questions you’re only partially certain they even asked.
How frustrating it is not to have a voice, to feel ignored, to not be able to argue or share an opinion. For your silence to be taken as agreement. For people to think your quietness is ‘cute’.
How strange it is to not be able to smell or taste. For someone to ask whether you can also smell burning, and having to admit you wouldn’t know there was a fire until you saw the smoke. To have the indulgence of food and cooking stripped away, so what you eat may as well just be fuel for the body, instead of the feast of the senses you’ve always loved it for.
How alien the world feels without eyes. Staggering through darkness, hands grasping out in front for something solid, any kind of comfort. Hopelessly trying to activate Bixby on your Android phone – a service perfect for the visually impaired if only you didn’t need sight to get it set up.
Each of these experiences has been a journey; I’m a better person because of them. I raise my voice just a little louder now to the customer who gestures to their hearing aid as they approach. I ask people to tell me what they need, so I can make them comfortable, ask for the best way of supporting them.
I understand also now how ill-equipped the world is for people with varying degrees of disability or illness. How hard it is to navigate a new place when your eyes are failing you. How insecure you feel about jumping into a conversation when you can’t hear the natural pauses in speech. How you have to double-check the stove is turned off properly, as you couldn’t smell the gas if it had been left on.
I hope the world will catch up eventually, but until then let’s just be kind to each other. A little understanding goes a long way.
We need to learn to be kind to ourselves too, be patient with our own bodies that fight so hard for us.
TL;DR: Bodies hurt, be nice.
Giulia Enders is nothing short of a gut wizard. You can purchase a copy of her book on The Book Depository.