Oh hello. hi.
This is an extract of a chapter from my book.
My book is called ‘Make It The Best Thing That Ever Happened to You’ and it’s an autobiographical account of when I had a spinal injury aged 22 and was left paralysed and had to teach myself how to walk again. This doesn’t sound like a cheery subject but I like to think the book’s quite funny really.
This is a chapter called The Freedom Jar. It’s from near the end of the book, but it doesn’t have any spoilers. It’s probably errs on the more serious side of things. But I like this chapter a lot, and I’d like to know if you do too.
If you love it then my book will be out when I sort my shit out and find a publisher. Or an editor. Or figure out how to self publish. So around about a quarter past NEVER. (Joke. It will be out soon. I hope).
The Freedom Jar.
Not big ones. Just every day ones. You’re making them all the time aren’t you? I mean, what are you doing tonight? And how did you decide? Was it a whim? An obligation? Are you going on a date and it’s a surprise venue? Maybe you’re popping down to the local with your work buddies, or you want to go for a nice walk by the canal. Or you really want to SWEAT so you’re going to go to the gym, or swimming or a SAUNA. Or you want to clean your house top to bottom and move that chest of drawers you’ve been meaning to for WEEKS to see if your tweezers fell down the back of it, cause your eyebrows look a right state.
Everything, even menial, is a choice. And mark my words, choice is a most DELICIOUS thing. It’s yummier than roasted sweet potatoes, or chocolate fondue and jelly or barbecue chicken or whatever you perceive to be the yummiest.
You can choose to wear those shoes you love that make your legs look all sleek and long and your hips move like Marilyn Monroe in Some Like it Hot, or to play knock and run aged 27 and feel like a mischievous child again, to run for the bus, to leave your job to become a waitress/waiter in Cuba because you’re bored with the British weather and want wearing a sarong to be an actual thing that’s acceptable. You can decide you want to be a parent, to go out clubbing when your boss is a twunt and dance your troubles away and snog that unsuitable boy, or go on an irresponsible shopping spree down Bond Street and go into those shops where the shop assistants are like the ones from Pretty Woman and make you want to buy the whole shop just to prove that you CAN. Or go for a nice long walk on a sunny day, or get a rikshaw, or… Ok I’ll stop now, you know what I’m getting at. And the list is endless. Choice. The only thing these choices require, is good health.
And thus that full delicious freedom of choice was snatched out of my hands aged 22. Fast forward from my spinal injury and my reality is kind of annoying. My balance and strength is poor and I can’t walk for more than around 12 minutes without significant pain and fatigue in my legs. On a good day, I can push it to 20, but I’ll pay for it the next day. I live in chronic, never going anywhere, pain. My body is like a car with a finite amount of gas in it and I don’t have the money to get more. In short, I can only do what my body allows me to do before it collapses. So whilst my life is still full of choices, they’re just really bloody annoying ones…if I go out in the day, I can’t go out in the evening, if I want to go shopping, I won’t have the energy to cook dinner, or tidy my room in the evening. If I have to go to the post office, I’ll have to sacrifice going to the shop. Etc et-freaking-cetera
As a compulsive over-sharer, I’d like to share an average day of my life. 50% because I like sympathy, and 50% because I want to shine a light on the spectrum of disability and to remind you that you are probably infinitely lucky, and you should celebrate it. With booze and dancing and gratitude.
– Wake up – have typically lost feeling in one of my legs, usually the left which is my weakest. It feels heavy as though I’ve had pins and needles induced by a reasonably sized animal (something like a cheetah, probably) having sat on it for about 6 and a half days. Kicking the duvet, I try and get a little feeling back so that my legs will bear my weight when I stand. Getting up, I walk to the shower with a small limp, as my left leg remembers how to move and feel things and catch up with the rest if my body. My leg feels like it’s burning and pins and needles rush down it before fading. I feel familiar fear, it washes up around my chest and flushes my cheeks; will my legs just stop working entirely today? I brush the fear under the metaphorical carpet in my head and get into the shower.
NB. There is a LOT of metaphorical carpet in my head. With a lot of fear under it.
– Dress. Wear trainers. Every single outfit must look reasonable with trainers. I will likely never look sexy again. I work in an office where you can get away with being relatively casual. But I still feel like I have a massive sign over my head saying “impossible to be taken seriously” because of my trainers. I can wear other shoes, but they must be flat and lace up. Slip on shoes will fall off my feet because I’ve lost the ability to grip so my feet are essentially now just massive steaks on the end of my legs (not REALLY, just basically, almost, steaks). Nothing is as comfortable as trainers. Other shoes triple my back ache and double my fatigue. So I choose trainers to have a sharper brain and hope no one notices my feet. But as someone who has a slightly unhealthy love of clothes, it’s more annoying than it sounds and leads me to sit there daydreaming about boots, stilettos, wedges and consider insoles and how realistic is might be to commission a shoe designer. But you know where I pop that dream right? (under that carpet).
– Clothed, make-uped, tooth brushed, I leave my very specifically located flat to get the bus. I have to live within a max 5 minutes of a bus stop, and within max 40 mins-on-a-bus radius from work. The tube is too busy (I have to have a seat) and too elbow jabby (I’m a fragile package). I also need to be a max 5 minutes from a shop, to prevent starvation. I essentially need to live on a main road in central London, which as you can imagine does wonders for my bank balance.
– My daily life is exhausting and sometimes when I finish work I’m in such excruciating pain and desperate tiredness that I simply have to get home to lie down as urgently as possible. This involves getting taxis home more often than HSBC is happy about.
– Side note; it’s strange how one ever tells you how EXPENSIVE disability is. It’s like a bonus poo on the already shit cake. Also no one tells you, or can explain, how ultimately frustrating it is to be disabled enough it affects you financially, but not SO disabled that you qualify for Disability Living Allowance. You just fall through the cracks of existence. In Primark clothing.
– Another side note about commuting; my disability doesn’t stop me feeling insane levels of guilt every time a pregnant lady / pensioner gets on the bus and you’re in a seat. There should be a league table of ‘less able to stand’. Or ideally an able bodied passenger should develop awareness of others and give up their seat. Usually I do it anyway and my legs scream in agony for the entire journey. Because the weirdly good thing about disability is it gives you hyper empathy. You’re instinctively about 20 times more empathetic than you normally would be and will give up almost anything to ensure other peoples comfort.
– Lunch time. Food is integral part of life now and my body hates me if I miss a meal because it’s having to work insanely hard all day long just to keep me going. I always have emergency snacks in my bag. I am the Jamie Oliver of Mary Poppins. Or something. At lunch, partly because I’m not comfortable enough with my colleagues to ask for help, and partly because I learnt in hospital the mantra “use it or lose it’, I walk to the supermarket to get lunch and it’s painful. Queuing in the worst. When walking, you’re using a different set of muscles and it doesn’t hurt as much, but standing, there’s no hiding from the pain as my joints seize, I lose sensation and feel shooting pain up my legs.
– Work itself is fine. When you feel like your failing at every part of your life because of your stupid body, being in an environment when sitting down and using your brain is the central requirement is AWESOME. Except little things, like when I have to stand up to use the scanner. Or go to an event in the evening and endure massive pain. Mainly though, it’s just AWESOME.
But the disability aspect will hang over your head like a GUILLOTINE the entire time. You won’t get sick pay. Even if your less sick than “able bodied”, you’ll be red flagged from the start as a liability. Even if you are KICK ASS (which I obviously am). It’s the gift that keeps on giving.
– I have quite a lot of friends. Which is fantastic and I’ll forever be grateful that people can be bothered with me. But friendship requires upkeep. You need to see them and squeeze them and help them and listen to them and make them laugh. And so I try and do this after work. Typically I’ll have been invited out for dinner and I’ll really want to go, but I’m SHATTERED. But then I remember that it’s to see my mate Zoe and she’s like, an actual gemstone, so I go. Half way through my back starts screaming at me. It needs to lie down. The seats are stools and my back feels like it’s burning with pain. Ill be having a FANTASTIC time but my body wants to go home and I have to take it.
And this is a good day. It’s not the 257 other days in the year when I’m in too much pain to meet, so cancel and lie flat on my back in bed and wonder if my friend will forgive me. Or understand. And also, feel so bored that my brain feels like it’s crushing up against my skull just for entertainment proposes. And I worry that I’ve missed meeting potentially the love of my life because my back was spasming or I lost feeling in my legs and was too exhausted to go. And so I just lie in bed making shit jokes on twitter to feel less lonely, or write, or paint my nails or watch back to back episodes of Suits in my pants and daydream about how great life would be if the NHS hadn’t fucked it up.
– And then when I get home from dinner or work or whatever and my kitchen’s a mess but I’m exhausted and have to get up and do it all again tomorrow, I’ll leave it. And instead force myself onto a yoga mat to do the physio that makes life marginally less pain heavy and collapse into bed and sleep the interrupted sleep of a person who’s constantly terrified of having a stroke in their sleep and waking up paralysed again.
And that’s my day. In some ways (probably quite a few) it’s DARK. But. BUT. There’s reasons why it is not and they are beautiful.
– Happiness. Despite the darkness, I still have the capacity to feel happiness. And because of the darkness it feels FUCKING AMAZING. If I, for some reason, have a few hours without pain, it genuinely feels like someone has given me £1000 for nothing. I’m naturally elated. To find joy in something so very basic is a gift – mostly people are searching for the world and forget to feel happy about simple things. Whenever I’ve had the pleasure of eating a nice meal, receiving a compliment, feeling the sun on your back, putting the world to rights with a lovely friend, get a seat on the bus. All these tiny little things are incredible to me. And they make me feel like I’m smiling from the tops of my toes to the top of my head. Delightful.
– Laugh until my tummy hurts from laughing. Or I think I might gag. Or actually gag. (I did that once and got so freaked out I left the party I was at. Couldn’t take the laughing.) When I was in recovery, the first time I properly laughed was agony. But my best mate said to me, “as long as you can laugh, you’ll be ok”. And she was right.
– Being nice. Just being fucking NICE is the BEST FEELING. Nothing in the world gives me more pleasure. Helping people out if you can and they need it. Being generous. With time, with love, with money. I spend my life making sure I’m not pushing my shit onto others. You know those people who walk into work and are like “I’ve had the worst commute and I’m in SHIT mood now, just don’t speak to me” or those people who become total assholes if there football team loses, or annoyed because Sainsbury has run out of peas. Those people astound me. By that logic I could be in a shitty mood persistently. But it’s dumb un-luck that my life turned out this way and I’ll be damned if I’ll make someone else miserable because of it.
– Being happy with how I look. YES I still have major town freak outs from time to time, but by and large I just look at my body with gratitude for what it’s been through. And what it’s got me through. And I’m proud of my scars and my spindly little legs and my boobs that are wildly out of proportion for my frame! PROUD.
The reason anyone is in their position, and you’re in yours, is luck. The reason I recovered to the extent that I did, is luck. I’m luckier than many and every time I stand on my own two feet I am humbled by that appreciation of luck.
And just as a final thought, to all women’s magazines; please STFU about being a certain size, or a certain diet that’s gonna make you lose seven stone but is likely to give you osteoporosis or something equally sinister. Please stop creating issues that needn’t exist. Let the following be your mantra – it is ALL we need; Be fit. Be healthy. Look after your body because if it works, you’re the luckiest motherfucker there is. Everything else is frosting. Believe me, you already have your cake.