what it was like waking to find you could not speak or move.
in one of our previous letters maddy told me she suffered a ministroke at some point around new years and woke to find she could not move or speak. i sent her some questions about it and she sent me an enormous explanation dis-regarding the structure of the questions, more or less and getting deeply locked into an expression of the experience drawing comparisons to harry potter, my fair lady and the wiggles.
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Hiii sweetpea! I am really really struggling to breathe, I am gasping- it’s a bit frightening. Gallileo, gallileo, gallileo figaro.
So I will reply now- to distract myself from this feeling of suffocation and pains everywhere. I just re-read this email and it said that you miss me and you wished I was there- and that makes me feel like I’m worth over a million dollars, which is something that I rarely feel within myself- so thankyou and I love you more than words could bear.
I think the first question is meant to be when you woke up what did I think?
To answer that, my first thought was- Oh shit, it happened again (another near death experience) and I do swear in my thoughts, so it was “Oh shit”. It’s hardly the most ladylike of first thoughts coming back, but that’s me. Quite blunt with a splash of dark humour. I could lie and say “I had a new found appreciation for the world, and thanked Jesus and all the angels- for returning me home” …which I did think later in a way (at least the appreciation part) but no, my first thoughts were definitely “Oh shit!…..It happened again” then I remember panicking a bit, trying to open my eyes (first I could hear noise becoming clearer- then I saw shapes moving, shadows..in front of my closed eyes) I felt the touch of my mum’s hand. I know her the feel of her hands, they are soft and very warm, then I felt very very cold all of a sudden- and then the light in front of my eyes becoming brighter and the noise ringing in my ears. Then it was almost like being shocked and my eyes flew open. I knew I was back- when you are in a death like state you are still doing things, you are still moving ‘in dreams’ you are still carrying out tasks and living- so to say “Why are you so tired? You’ve been sleeping forever” to someone who has been in a comatose state is folly. It’s more exhausting being in a coma- than being in the land of the completely living.
I could feel the side of my face drooping, my eye’s range of vision was smaller because it was still half closed, my half my nose felt like it was melted off, and my mouth was uncontrollably lax on the one side. I couldn’t even feel half my tongue. I knew something was wrong, and when I went to speak I was thinking “Owww” as I could begin feeling the start of pain all over again- I’ve told you before that end stage is absolutely wicked merciless. It gives no breaks- and you are constantly generating pain. The only levels it ranges from with the addition of pain killers is ‘unbearable to absolutely fucking ridiculous’, so I could feel it steadily rising to ‘unbearable’ and wanted to say “Mum, oww” but I couldn’t do it. I could barely keep my eyes open- or actually have control of my mouth’s position. I couldn’t even move my toes. I couldn’t do anything but I was thinking perfectly clearly. I wanted to start screaming then, but I couldn’t do that- I knew now the only thing that I could do was use my huge brown eyes to talk to my loved one. My mum had her hand wrapped around my wrist gently- and was squeezing it- and her hazel eyes were staring down at me, her face was wet with tears and she was asking me “mads, mads are you there” so I tensed my eyes to go even bigger and rolled them into a ‘nod’. She understood because she looked so happy. Then she took a seat on the bed and started stroking my hair and then I had to shut my eyes again and rest.
For about two days I communicated with my eyes, on the third day I noticed that I could feel my throat again- and made a “Nrrrmmmm” sound and lots of mmm and mehh sounds- then I could start saying my a’es e’s i’s and o’s again- and the u’s! It was all very My Fair Lady for the next two days, willing myself to talk- it was all in my brain, but it came out in jumbles. I would want to say maaa but instead I would say mrrrrr. The vowel’s were funnily the hardest.
My next challenge was moving. And I was reminded of Kill Bill instantly. It was exactly like that, Wiggle your big toe. I was a lot more abusive to myself than Uma Thurman, and was very unforgiving. I’ve always been very hard on myself- I always had to be exemplary- I always had to get an A plus. Otherwise, what was the use- and abused myself and beat myself up about all the failures in my life- not moving and walking was one of those failures (to myself). I have always been very very compassionate and understanding toward everyone else, for everyone else- there’s always tomorrow, but for myself- there is no room for compassion and no time. I started moving my pinkies- I chuckled to myself that my first movements could have been “Dr Evil” if I could just move my arm up to my mouth.
I am a quote-a-holic and a movie addictee, I think my life through quotes and books and movies and tv shows and music music all the time.
When the show scrubs started, I was awe struck by JD’s way of thinking, a narration of his life- that’s how I always thought, only much much weirder. So, it was even more intense when I could not talk or move, I had conversation’s with myself, and with other’s. My brother was going to pinch my last lindt chocolate ball- and the thought was running through my head like this “Yo fatty, don’t you d- NO. PUT IT BACK. HEY ASSHOLE, WHEN I CAN EAT AGAIN- YOU BETTER FUCKING BUY ME THE LINDT FACTORY” (he always steals my food when I can’t eat it, and he is quite the opposite of me, he is quite overweight, and I am significantly underweight to say the least..he could have done well without my chocolates :P) of course he couldn’t hear any of this- and it was extremely Dudley dursely pigging out on Harry’s birthday cake, but Hagrid wasn’t around to turn him into a hybrid pig.
Within about two weeks- I was back to myself, walking and talking with minimal help from physio’s, a lot of encouragement from my mum and 100 percent sweat, tears and stubborness from me.
The whole experience just reiterated my love and special connection and fascination and admiration especially, for those with intellectual disabilities. I have always had a soft mushy spot- a huge one from a young age for those with down syndrome- and cerebral palsy and other neurological disease.
People would be nasty to them, call them stupid and idiotic- not worth the time and the patience, but I always saw them as ‘above standard’ they were no different to me, they were better. They had to go through more- and they were gentler happier and much kinder than your average joe. They were angels on earth to me, my friends.
During a very long stint in hospital- I made a friend called Darcy. Darcy would impact my life forever, and I will never ever forget him- he is in my heart and left a print there that will never move.
He had cerebral palsy.
I frequently heard the doctors say “he was brain dead” and call him “stupid” in medical terms. The nurses would leave his needs till last, because it’s not like he could say anything- or do much more than grunt and make farting noises and hit the side of his chair and lol his head about.
That pissed me off and upset me, because I could see that he responded.
Darcy was so special in that he was so simple- but he responded to music. Not just any music- see, Darcy was a devout fan of the Wiggles. All day everyday, 24 hours a day- Darcy had a wiggles CD going. He had his discman- and he had his earphones in, and he listened to the wiggles on rotation 24 hours a day. Darcy rarely cried, or complained- but when his wiggles CD stopped, he became really distressed, and made sad noises “Merrrrrhhmmmmmmmmmm” in low sad pitches, and then high distressed pitches. The nurses always took too long just to change his CD and press play, it wasn’t bloody hard- but they could take maybe an hour and a half sometimes- it wasn’t their priorty, but Darcy WAS my priority and I hated seeing him sad, so I started wandering over to his cubicle, changing the tape- squeezing his hand, and smiling and saying “Hi darcy, there’s your wiggles mate” and going back to my cubicle, after about only a week- darcy started making happy noises if he saw me nearby and reaching out to me. Everytime I would pass, or someone would say “Maddy” he would start clapping and making loud “Maaaaaaa” happy noises. He would give me the HUGEST smiles, at at this point in time, I had been feeling like one of the loneliest people in existance, and this boy- who was older than me (he was fifteen and I was thirteen) who was ‘old’ but had the mind of a child (hey, but who said kids were stupid?!) had touched the depths of my heart, forever. Darcy made me feel so loved, and to at least one person- I was really someone. It was through Darcy that from those heartfelt moments where he threw me smiles- that I knew there was one brave little man in there- one so smart, it would blow us all out of the water, and the best part was his soul was pure. He wasn’t tainted by society’s squanders and hate, he would always remain untouched in his hidden genius. He just can’t communicate like you and I. I called upon Darcy’s bravery when I was in my predicament. He’d want me to do the hot potato or something. :)
