On 6th February 2010 I was fell running, with a headache which I ignored, while I was a busy mum to India (10) Harvey (8) and Woody (5) and wife to Mark and worked full time. Like most working mum’s my life was extremely hectic. At midday the next day, I was actually misdiagnosed with a stress induced migraine by a junior doctor at A & E in the Northern General Hospital Sheffield.
Five hours after being discharged from hospital (with some Co-codamal & orders to rest) for my ‘stress-induced-headache’ I suffered a catastrophic brainstem stroke – A dissection, occlusion and infarction of the right Pons at 18.09 on my lounge floor which was 1/2 hour from the hospital,l I’d presented at earlier that day. Three days were spent in a coma – my life missed three days no ethereal dreams just nothingness. When I woke up it was like ‘waking up inside your coffin’ or ‘being buried alive’ or ‘trapped inside’ – your worst nightmare.
On the fourth day for two weeks after my injury I was considered vegetative by nursing and other clinical staff, even though was always aware of my self and environment ie. An unconscious unable to give any communication signal. My husband Mark was told by the ICU Doctor in the early days; ‘She’d be better off dead’. I was on a life support machine because I couldn’t breathe alone.
However, my friends knew I was inside. If my head was pointing the door as they visited I wept silent tears. (Maybe relief, maybe emotional lability but that was a defining moment for me. On their own back, they established a communication signal with me with a rudimentary communication board they themselves had designed. I was told to try one slight blink for ‘no’ & two blinks for ‘yes’ while one friend pointed to letters and one friend wrote the letter down that I blinked. The 1st word I spelt out after 2 mute but fully cognitive weeks was ‘SLEEP’. It was euphoric and a moment I was released, un trapped and one I will never ever forget.
The indignity, boredom, separation anxiety, fear of my perception of not being worth keeping (I’ve seen the films), pain, cramps, hallucinations, over thinking, trachi ‘pop-offs’, when all I had was an NHS clock on my wall to focus on. I’ll never forget the 1st time each of my kids came to visit me for the 1st time.
India (10 years) – She bravely sat for 45 minutes sharing her news and school, before giving her Dad the timeout sign ‘T’ she was ready to leave. You have to remember I had tubes coming out of every orifice with the life support machine blipping. She proceeded to throw up all over the waiting room with her Grandma because of the shock.
Harvey (8) – He came he struggled to smile and fake his distress. He didn’t speak for 48 hours afterwards and just shed silent tears. His grieving process.
Woody (5) – Came and told me school stories and massaged my head. It was truly heart-breaking not being able to envelop any of them and to tell them I loved them.
It was like a role reversal with my kids – they read to me and massaged my feet and head. It was truly breaking to miss seeing them for two weeks initially. (They last saw me grey and half dead exiting the house on a stretcher, with a hive a paramedics and ambulance drivers. My friends used to describe all the stuff my kids were doing in my absence – piano, Beavers, singing, football, hockey – without me. I just needed to know they were safe and well, I didn’t want details. My friends figured that out as I used to show them by ‘glazing over’.
It was 8 weeks in ICU (of 9 weeks) before I got a thumb flicker 2mm of my right thumb. That was it! My husband was SOOOO excited. I really didn’t give a stuff. I could wipe my own arse with a 2mm right thumb flicker at week 8 in ICU! My ICU physio did say ‘This is a good sign’ I clung to his words like my future depended on it (It really did as I later discovered). The others word I cluing too in a existence with nothing positive to focus on a nurse, who’d worked in stroke rehabilitation said to me ‘to work damn had in rehab’. Later, I realised, I took her literally!
I was not able to smell my expensive Clarin’s lotions and potions, so they were a right waste of money! In fact I faked being able to smell the ‘alcohol wipes test’ the junior doctor did, because I’m still convinced she thought I was thick and unable to see what she was using to test my sense of smell. I couldn’t smell but I could see her do the smell test! I had wrongly convinced myself that I had to be able to ‘smell’ in order to leave ICU, which I hated.
ICU was an horrific experience – people died, people and doctors talked over you, I was bored, I was lonely. I was scared. I was in constant pain. I hallucinated (no one told me). I had insomnia (that’s hours of lying motionless with just a clock on the wall). I was nil-by-mouth, all bar 10 sips of Earl Grey tea. I was extremely vulnerable and had no prospect of collecting my dignity at the door (rather like you after having a baby) any time soon.
One particularly awful occasion was when two dark suited men arrived at my bedside in ICU. I was convinced they were there because the piece of paper in their hand was my Will that I had to approve by blinking, because I was gonna die. Well no one warned me or explained why they were there. It was horrific. I was beside myself.
Turned out they were there to witness my husband getting Power of Attorney while I was a guest of The Northern General Hospital and unable to have full capacity. This experience really hurt me. I was already feeling very vulnerable before my stroke and this made me think money is more important than me. All I could think of was when was the last time I told my kids I loved them. Or when the last time was that I hugged them. I mean it’s not as if Richard Branson could have given me a blank cheque to get better , I was fucked, I knew you couldn’t take your house, your money or your trappings of success with you when you die you know?
My bessie mate Alison played charades to try to retain my sense of humour and tried to keep my spirits up. My mum tidied and re-tidied my locker in absence of not knowing how to communicate with someone who was mute and incapable of communicating. Mark sat on his hands swaying in his work clothes, trying to figure out how to ‘fix it’ as he struggled to comprehend that ‘I couldn’t wipe my own arse’!
You see only 2 weeks earlier at my sister-in-laws, Jo’s in Bolton, over far too many bottles of red wine, Mark said to me (as we discussed guardianship of our children in the event we were both wiped out in a freak accident… cheery hey?)
‘If I couldn’t wipe my own arse, I wouldn’t want to live.’
To which I said, as a devoted mother of three, ‘I don’t agree.’ That drunken philosophical debate proved to be my life saver just two weeks later in 2010! Now that’s pretty scary.
Now I learned some new skills in ICU, like to swear with my eyes! Any guesses what words I was thinking? (clue begins with ‘F’*** *** with that camera!)
My husband and I came to disagreements in ICU, its so hard being so mad but not being able to shout. Worse still I had to rely on him to communicate via my spell board. He was shit at the spell board by the way. For example,
Mark was helping me to communicate on a visit. Fair play to him, it’s bloody hard. I was lying there in excruciating cramp pains in my legs. Naturally, I wanted him to ease the pain and know why I was behaving so badly and unappreciatively, during his night time visit.
He gets the board, ‘Great’ I’m thinking. He points to ‘A’ I blink once for ‘no’ then ‘B’ I blink once for ‘no’ then ‘C’ I blink one for ‘no’ (you get my drift) all the way to ‘L’ so I blink twice for ‘yes’. He writes down the letter to remind himself later. He goes back to pointing at ‘A’. I blink once all the way to ‘E’. (This is going well I think). He blinks from ‘A’ to ‘G’ and I blink twice. I look at him because in my mind its the end of the word I want to spell out. However, onto a good thing, he goes back to ‘A’ completely oblivious that he’d already got to the end of the word. Shit, I’m thinking but I dutifully continue with the next letter and the start of the next word. So I last spelt out ‘G’ and now I’ve spelt out ‘C’. At which point Mark dropped the spell board and said,
‘Kate, you”ve lost your marbles, there is no such thing as ‘LEGC’!’ Now, if I could have I would have got up there and then and punched him!
I was so bloody excited and focussed on leaving the oppressive, though life saving, ICU (and the 1:1 staff) that I failed to even consider the enormity of moving onto a ward where the nursing staff were shared between seventeen other residents. But then again why would I have known that? I’d only ever been to hospital to have three babies, prior to this lengthy stay.
The 1st two weeks were horrific in Osborne 4 at The Northern General hospital. No one knew me. No one knew how I liked my arms positioning or my 10 t-spoons of Earl Grey Tea, or my bedtime sleep routine or how often I liked to be turned or how I liked to take my bed baths or what help I needed to try to sleep at night. Or worse still, how st recognise that I was in pain or not. You see I quickly realised that my only communication, my eye expressions, were the only ‘window’ on my soul, feelings, fear, pain, upset etc, but if no one looked into them, I was screwed.
I stared all day and night to catch the eye of a nurse at the nurses station. I was on high alert constantly, I became obsessed. Even if I didn’t need assistance for my dirty nappy to be changed, or to be turned, or to turn the fan on because I couldn’t regulate my body temperature or to wipe the ‘Turner and Hooch’ copious saliva off my chin, I needed to get the nurses attention. I was still here, lonely, scared and completely sure I would think of something I would need, as and when I got the nurses attention! six weeks muddled along. I had no control over my environment and hated being upright because my saliva loss was horrific. I remember using one whole box of tissues during one curtailed (much to my annoyance) physiotherapy session. It seems I ‘fatigued’ quickly and needed to rest! Don’t they know I was a 70 mile-a-week fell runner! Let me rest for 10 minutes then start again! Instead, I used to have on average 20 minutes in an hour-long neuo-physio session. I was so frustrated and cross that I was being short changed.
To be continued………
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