MAKE IT THE BEST THING THAT HAS EVER HAPPENED TO YOU

Not sure who introduced me to Susie’s account on Instagram, but I am very grateful. She is such a brilliant addition: the perfect balance of ‘telling it how it is’ and upbeat. Which also sets the tone for her list all about living with an invisible disability.

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• Hi huns! I’m Susie, I’m 36 (fuming about it) and I don’t mean to brag but I am a medical miracle.

• When I was 23, and studying at uni, I started to suffer from back pain – a glamorous affliction for someone in their prime. I went to my GP, who told me it was stress – a side-effect of writing my dissertation – I believed her, took the prescription for painkillers and went on my merry way.

• But a month later I was still suffering, and trekked back to the GP – who gave me more meds.

• Another month passed, and it still wasn’t improving, so I took matters into my own hands and joined a GYM. I knuckled down to physio appointments, pilates, gentle weights, cycling – and yet somehow I was getting weaker and weaker.

• Then things took A Turn. My left leg started to give way underneath me, landing me SLAM on the ground. One afternoon, it happened in the gym mid stretch – feeling mystified and terrified, I took myself to A&E, where a doctor did a 10 min examination, LITERALLY shrugged and told to me to have more confidence when I was walking.

• I was beginning to feel somewhat insane… every week was a new problem (even including not being able to wee!) – but because I was only 23, doctors just kept turning me away, leaving me feeling like hypochondriac drama queen.

• One day, when I stopped being able to climb stairs, I snapped, phoning the doctor, I insisted on a referral. Miraculously, she agreed and organised to send me straight for a scan the same day

• Literally 24 hours and an MRI scan later, a doctor came and sat on the edge of my bed to tell me I had a tumour on my spinal cord compressing my nerves. Whilst it required urgent removal, she reassured me that it was fairly standard surgery.

• 24 hours after that, I was being wheeled in to have surgery feeling relieved to know what was wrong with me and comforted by the fact my surgeon had told me I should be at home and recovering within 7 to 10 days.

• I woke up paralysed.

• A combination of misdiagnosis and awkward tumour placement, meant my spinal-cord and nerves were damaged, and I couldn’t feel anything from below my belly button.

• It feels strange to say that I never really had the oh-my-God-three-days-ago-I-was-walking-around-and-now-I-am-paralysed moment – but it’s true. This may or may not be down to the impressive amount of morphine I was on… but, stating the obvious – not being able to move half your body feels so bizarre.

• The first month was genuinely bleak. I was in horrific pain – it felt like my spine was being ripped out of my body – and whilst it may seem like a minor issue, I was so constipated I genuinely thought I might sink into the Earth.

• Wrapping my head around being 23 – and watching my life go from full of possibility, to feeling like it was basically over – was savage. I genuinely believed ’d never have a job, a relationship, have sex, go on holiday, or just have independence, ever again. I sank into depression.

• The first person responsible for lifting this was Lizzie – my brilliant, hilarious, tiny and talented physio. Lizzie saved my life.

• She first came to see me two weeks after my surgery – and probably because we were relatively close in age, we bonded immediately. Lizzie she was determined to help me and spent far longer with me than she strictly should have. She gave me exercise upon exercise and within a month – thanks to her skills – she had taught me how to sit up and shuffle along my bed – enabling me to use a wheelchair and regain some independence.

• She didn’t stop there, she pushed me and pushed me – and one day, after being paralysed for almost 2 months, I stood for the first time, clinging onto a standing frame for dear life. It felt huge: a milestone that opened the door to possibility.

• As time dripped into Month 3 of hospital, my progress stagnated. Although I could now stand using a frame, and move my ankles, the movement in my hips hadn’t come back, so walking was impossible. To make matters worse, after over 8 weeks of having a catheter in, I caught a urine infection which turned into SEPSIS.

• In short, things weren’t looking good, and although no one had actively said it yet, I knew the general medical consensus was that I was facing life in a wheelchair. Around this time, I had a meeting with my surgeon and my parents – trying to figure out what to do with me. I sat, mostly silent, in a wheelchair, whilst they discussed whether they should operate again, or wait – when my surgeon leant forward and quietly told me he thought I’d probably never walk again.

• Out of nowhere, I felt an overwhelming stubbornness wash over me and I couldn’t stop myself from snapping ‘Yes I will. You have no idea what I’m capable of!’. My surgeon looked temporarily awkward, before saying, ‘Well anything is possible!’.

• I became obsessed with walking, and would lie in bed for hours trying to move my legs – visualising myself lighting up the nerve pathways down to my feet.

• And then, just as things felt impossible, it happened. One Saturday night, I was absentmindedly trying to get my legs to move when BAM! I VERY suddenly got my hip movement back and could lift my leg clean up in the air.

• After that recovery sped up, and before I knew it, they let me out of the hospital.

• When I left, I was using 2 crutches to walk, and a wheelchair for longer distances, but over the next few months, I reduced it to 1 crutch, and then a few months after that, I started walking unaided. And I was so blindly determined to get back to life, that 4 weeks after leaving hospital, I got a job in a call centre.

• Somewhat amazingly, life went on.

• Today it is 12 years later. I can still walk unaided, and it feels like a miracle. When I’m walking along, I often look at the sky and whisper ‘thank you’. But I have a little limp, I can only walk for around 15 minutes before I lose feeling in my legs and have to sit down – and I am in significant amounts of pain. I am disabled.

• If I listed all the shit I couldn’t do, it would bore you senseless. The things I miss the most are basic. I couldn’t give a fuck about skydiving, I just miss nights out dancing. I miss shopping sprees on high streets, walking in the countryside – and knowing what’s it like to be able to feel my feet! I miss thinking about having children (I can no longer have kids), being able to eat whatever I want (it’s fucked up my digestion) – and I really miss not feeling like I belong in society. It often feels as though I’m sitting on the sidelines watching life happen to everyone else around me.

• For 5 years after my surgeries, I struggled with my mental health. Having around 20-30 panic attacks a day, I existed in a constant state of terror. I was scared of the sensations in my legs, the loss of feeling, pins and needles, collapsing, etc etc. The fear was as exhausting than my physical symptoms – I wasn’t living, I was surviving.

• And then, my friend had a sudden break up. Her dad came to pick her up in the middle of the night to drive her home. She told me afterwards, that whilst she was crying tears of desperation, he said to her, ‘I think you should decide to make this break up the best thing that has ever happened to you’. The words, even though they weren’t even said to me, CHANGED my life. I realised I had a choice – I either waste my whole fucking life being scared, angry and consumed by all the things I couldn’t do, or I could literally MAKE it the best thing that ever happened to me.

• The fact is, the world we live in is created for able-bodies (people LOVE standing) – but when I think of all the things I love; having dinner with friends, watching films, listening to music, laughing, creating, – I can still do them all. And now with some added bonuses!

• I have the mental resilience of a tiger (are tigers mentally resilient? I should google that). I have seen fear close up, and I exist inside it – but the closer I am to fear, the more heightened all my emotions are, even the good ones. And so, I am fortunate enough to be regularly overcome with huge waves of gratitude. I am alive. I am so fucking lucky.

• And as it turns out, most of the things I was so terrified I wouldn’t experience again, I have. It took A FUCKING LONG TIME, but I finally met a boyfriend who is legitimately ace, I got a job, and then another, and another, and I live on my own, in my very own flat, – which I technically only own a small percentage of, but let’s not quibble about the details! You can still have everything you want, if you adjust your perspective a little…

• Here is the thing: healing isn’t linear, it often takes a very long time, and I still have awful days … but our ability to adapt is incredible. I don’t want to sugarcoat it, being disabled can be exhausting, demoralising and scary. But it can also be a gift: a dickhead sensor. It has exposed who I am at my core – and it exposes who everyone else around me is as well. So I know how very, very lucky to have some people in my life who are prepared to slow down and sit with me.