By Kate Allatt
“You need to assemble your family. Sorry.”
“What, why? No! Our kids need Kate. No. You can’t be right. No. You’ve made a mistake, ”said Mark, my husband, as he pleaded with the ICU doctor.
“I’m sorry Mark, Kate’s had a huge brainstem stroke –a right vertical artery dissection, occlusion and infarction of the Pons — it’s severe. Our brainstem is the control box for our body. She’s in a medically induced coma on life support. If she survives the night, she will have very little quality of life and we would recommend switching off her life support. I’m so sorry, ”the doctor said.
Three days later, I slowly emerge from my coma.
‘I’m here. Help! Help! Why can’t you hear me. Stop ignoring me. Why are you talking about me? I’m right next to you. What you are doing? Why am I here? Take that out of my mouth!
‘Where are my kids? I need to hug my kids.’
‘I’m so thirsty. I need a drink, look at my eyes, I need water. What’s happening to that poor man next to me? My leg cramps, please make it stop. Why can’t I move myself? Someone HELP.’
The voice in my head was freaking out.
Later Mark explained: “You’ve had a stroke.”
‘What! Don’t be ridiculous, I run 70 miles a week and I’m 39,’ said my voice in my head.
“You’ve also got Locked In Syndrome,” Mark said.
“You mean that’s why I can think, feel, see and yet move absolutely nothing below my eyelids!”
Mark said, “The doctors recommend we read The Diving Bell & Butterfly to help us.”
‘…he never recovered! Sod you all for trying to lower my recovery expectations. I’ll be home to hug our kids, eat again and run to the hills. I’ll prove you all wrong. Watch me! …and please don’t eat those McCoy’s Cheese and Onion crisps near me!’
Nine weeks later, I left my amazing one-to-one care to head for a busy stroke rehabilitation ward. By then, my right thumb had moved three millimetres and I had slight head movement. I’d endured hours of boredom with a ticking clock for company. I had almost no oral hygiene. I had no taste pleasure except for secret teaspoons of Earl Grey tea, until it was stopped.
I experienced a real Code Blue emergency after my percutaneous endoscopic gastrostomy (PEG) insertion; suffered horrific hallucinations that no one warned me about; endured gut-wrenching separation anxiety; and had frequent and frightening trachi pop-offs.
I hoped my rehabilitation might ‘save’ me, but I was wrong.
Six weeks into my rehabilitation, I had my formal review. Slobbering like Hooch (the dog from the movie Turner & Hooch), I was told by the multidisciplinary team (MDT) treating me that I hadn’t improved significantly. In fact, plans were afoot to discharge me to a nursing care home. What?
I had to be removed from the meeting, hoisted like a sack of potatoes back in to bed. I spelt out to my partner-in-crime S-T-A-N-D B-Y M-E.
On top of being written-off in my review, I never got a refund to climb Kilimanjaro via the Western Breach for my 40th birthday, which I’d paid for, and my now ex-husband took our kids on holiday on my actual birthday, as I lay in hospital.
I was fuming, had a point to prove and set about ‘willing’ every sinew in my body back to life.
I later discovered Dr Robert W Teasell clinically referred to my ‘willing’ as repetitive, frequent and intensive actions, which he says are necessary to optimise stroke recovery. I’d look at my finger and shout — in my head — at it to move in an attempt to re-wire my broken brain. I had never been average; I was highly motivated and driven to hug and be reunited with my kids, India, Harvey and Woody.
I exercised like hell to the point my rehabilitation therapists thought I pushed them harder than they pushed me!
I had an abject fear of not being able to run or eating ever again with my loved-ones. That stuff mattered to me.
Ten months after my stroke, against all the odds, I walked out of hospital, then hugged my kids. I achieved two extraordinarily ambitious goals.
Running again by my first stroke anniversary, which was in 12 weeks time, became my total obsession. As was my passion to voluntarily support other Locked In Syndrome survivors around the world. Such was the demand, I had to set up a charity — Fighting Strokes which I ran for 5 years. Even now though, I still voluntarily advocate and peer mentor all stroke survivors who want help to try to become the best versions of themselves after stroke.
Sure, I had mobility limitations, balance problems, swallow difficulties (dysphagia), falling issues, was doubly incontinent, had undiagnosed PTSD, anxiety, a draggy leg, I had lost my career and my confidence and purpose, friendships, my ability to parent, my freedom and my beloved running.
But I was still alive, right?
Cracks started to appear in my marriage. My brain injury, lengthy absence while I was in hospital, his inability to cope or show empathy, his denial and judgements, all lead to a very broken family. In fact, it wasn’t just us that were damaged, my kids were very broken, which broke my heart.
Eventually, after trying to keep my family together for years, my husband and I parted company. It was a huge relief, however it became clear that I had other issues to contend with.
I found myself thrust into the unfamiliar online dating world.
The whole concept totally petrified me given it had been thirty years since I’d last dated a guy I’d met in a bar over a pint at nineteen.
I used to agonise at what point I would drop the ‘S’ — stroke- bomb in my flirty texts? Straight away? A few texts in? When you progress to a phone conversation? Do I declare my stroke on the first physical date when they see my draggy leg? Or do I take the risk of them seeing me, being deflated and judging me that ‘I was too good to be true’.
I avoided speaking on WhatsApp before I met a guy because I was very aware that my face didn’t match my voice and I didn’t want to hear disappointed surprise in their voice. But if I didn’t declare my stroke before meeting a bloke was I being dishonest with a potential suitor? I guess, if they were worth their salt they wouldn’t care and would see past my physical limitations.
But there was much genuine male interest from good looking guys, which surprised me.
With some, I even progressed from endless ‘safe’ texting/sexting to meeting potential suiters and even kissing guys. Whilst some guys were very dishonest about their online profiles others painted almost true pictures of themselves.
I quickly realised I had another far bigger problem to overcome in my quest to find a new guy — my urge incontinence.
My ‘Latch Key’ or urge incontinence — that incidentally many other ‘normal’ fifty plus women also regularly manage — had certainly been exacerbated by my stroke. Sadly, having only experienced married ‘cheek pecks’ in recent years, I also discovered my impulse to wee was triggered when snogging guys who sexually aroused me.
In absence of any medical guidance or support, I set about researching sex after young stroke issues and discovered the huge taboo. Not just for stroke survivors I might add, but support for their often caregiving partners too.
Consequently, I did ponder whether Occupational Therapists or Sex Therapists get even offered or actually attend the ‘Communicating Sex after Stroke’ CPD training module?
Perhaps, the training is delivered on the graveyard shift on a Friday afternoon and loses to retail therapy in London?
I’ve toyed with the idea of pitching the Naked Attraction producers a new TV special idea: ‘Disabled People Want Sex Too.’
As for me, I did also run properly again just 18 months after my stroke. After a few awful first date experiences which I wrote about in an anonymous Twitter blog, I think I’ve finally found someone who accepts me for me and it feels amazing!
Is he perfect? Of course not, but then neither am I.
He makes me laugh so much even when we have sex that I’m relaxed and not remotely self-conscious. We talk constantly when we are together and not about stuff like ‘who is doing the Tesco shop or taking Harvey to football’.
He makes me feel like the nineteen year old that I’ve always been in my head.
Yes, he brings the best out of me.
Kate Allatt is a stroke survivor, global stroke advocate, inspirational thrive speaker, rehabilitation consultant, mum & author of ‘Running Free: Breaking Out Of Locked In Syndrome’ (2011 Amazon). You can follow Kate on Twitter here — @kateallatt