Saturday, 31 May 2014

Gimpy to Growth in 3.5 months.

02, 2014.
Hand Tourette's. That's what I called it, for lack of a better term. That's what I described it as when I first mentioned it to my family, and to my physiotherapist friend. My hand has Tourette's; it's doing it's own thing, it's jerking around when I try to wave or gesture and generally not doing what it's supposed to. 
My colleagues and friends (the few I've told) call it my 'gimpy arm'. To the point where I've started sentences with 'have I told you about my gimpy arm?'
It's gimpy, gammy and twatty. Those are my pet names for it.


03, 2014.
This was the best I could do.
I can't write. Or as the doctors would say, I've lost 'motor skills'. I'm writing as best I can, blagging it, playing it down, pushing the pen with my left hand and holding it with my right. I'm doing a similar thing with my toothbrush, holding it in a tight little fist and pushing with my left hand, like a child. Writing is my thing. I need it. It's my therapy. I can type (one-handed and infuriatingly slowly), but handwriting has just... Gone. 

My livelihood is draining away and I'm being left with blank pages and empty notebooks. 


My family comes to see my performance, 'Much Ado About Nothing', in which I play Hero - my dream role is Beatrice, but she seems just that little bit out of reach. I need to learn to be sassy and ballsy before I can play her. Until then, I'm cute and lovey-dovey Hero, which I kinda love. We're the best cast. The best cast performing that night, and the best cast I've ever worked with. I'll be devastated when this is all over.
In the final scene, we have a freeze frame moment. I'm staring at Luke, aka Benedick, smiling painfully hugely and ready to burst into some kind of dance after he exclaims 'strike up, pipers!'
I can feel my right arm twitching at my side. I'm holding it slightly extended, away from me - a rookie mistake. I've learnt over the past month that the best course of action is to pull my arm tight behind my back, or cross both arms across my chest, whereas leaving it extended in the open like this... 
Twitch. Sway. Twitch. My hand curls a few times. Twitch. Stupid Hero.

Of course my mum notices, and she tells me to see a doctor. Tells, commands, guilt-trips. It works. 
I call my forever-busy surgery, make an appointment, explain and show as best I can, and as I predicted I am met with dubious states and vague puzzled suggestions. I'm sent for an X-Ray of my shoulder and arm. They call me back - my dubious doctor now frazzled and apologetic - 'possible ligament damage... Faxed the hospital... Go up there as soon as you can for more tests.' 


04, 2014. 
The neurologist believes me. I want to cry. Dr RajeveczagtdnameIcan'tpronounce understands, and wants to fix me. ASAP. 'Use your loaf', he says incredulously as he checks my arms' reflexes. I snap back to attention and realise he's reading my tattoo. I explain, he listens. He tests my eyes, my fingers, my depth perception, my reaction time. He's thorough. I feel ridiculous and I blush multiple times as he makes me count backwards from a hundred and I struggle a little too much for a soon-to-be graduate.
I'm a soon-to-be graduate, who can't write her own name.

'I'll schedule you in a brain scan soon, and a follow-up appointment in a few months, to see if you're better. In the mean time, come off your oral contraceptive pill. That'll help. I'm not saying having babies is the solution, obviously be careful. Very careful...'
'Well,' *giggles at the doctor's phrasing of delicate matters* 'Thank you, I'm just glad I'm not crazy!' 
'Well,' the doctor looks at me over his glasses. 'That remains to be seen.'

George the nurse watches from the corner of the room, cute but a little quiet for my liking. I make it my mission to open him up as he walks me to Pathology. Before too long he tells me about his dreams to attend further education and become a specialist. He advises me on blood tests as I'm a pathology virgin; it's a sharp little scratch, and then a dead arm for a while. 'Hey man, I have eight piercings and two tattoos, I can handle this!' I giggle nervously. I'm giggling nervously like, a lot. All the time lately. Hospitals make me nervous - who knew?! 
The vampire is friendly. I'm #52. She likes my Pandora bracelet, and suddenly we're so busy chatting about silver pretty things I don't notice the blood seeping out of my left arm. 
My boyfriend was there the whole time. Flitting from waiting room to waiting room, planning our dinner and watching my bags. I didn't even ask him to.

My Dad puts me on his private healthcare, and we see another specialist in Sussex. He makes me write my name and address by way of demonstrating my poor writing, and I almost break down into tears as my hand struggles to find the page and sit still before I write the most hideous insulting excuse of my name, a jumble of letters, a child learning to write 'joined up'. 
I walk down the corridor for my blood test; they're testing for abnormalities in my blood which may have caused a fault in my immune system, and ultimately caused this 'onset Chorea' (pronounced coooo-reeee-ah, like the unfortunate country but longer and weirder). Mum asks if I'll need her in the room with me. I politely decline, brushing it off 'l've had a blood test before, once, I'll be fiiiine!'
The nurse comes in and starts counting out nine vials to correspond with the nine checker boxes on her sheet the doctor gave her. Nine tests for nine abnormalities. I look over, but the only one I can read is 'lupus'. Maybe I'm a werewolf, I giggle to myself. The nurse says a cheery 'be right back!' And while she's in the next room, I'm running back down the corridor as fast as I can, running back to mummy and daddy, and I'm asking if one of them can come in and hold my hand. I've changed my mind. I do need them. 

People are starting to notice a drop in my face and a lack of movement on one side; I can only smile and talk with the left side of my mouth, and my right eye won't close all the way. Sometimes my face just freezes up. I can't form words, there's a blockage from brain to lips. My right side gets chills from time to time, and worst of all? I've gotten clumsy. Like, actress in a Hollywood movie who just can't find a man-clumsy. Katherine Heigel clumsy. I can't be trusted with trays or glasses; I walk into every single doorframe; I bruise everywhere. I have to ask for help carrying things, be it trays in Starbucks or a glass of water to the dinner table. If I have to carry two drinks, I'll do so one at a time, in my left hand only. I have cuts all over my body from where I've tried and failed to shave. Getting dressed is taking twice as long. I'm slow, I'm clumsy, and I never used to be. That's the worst thing to come of all this.

27/05/2014 is brain scan day. I have to return to that deceptively beautiful smooth MRI machine that sits calmly in a sterile white room that is brightened up considerably by LED lights that change from purple to blue to green to yellow. Never red. 
Alyson chose the lights. Alyson is my lovely radiography-MRI-CT-somethingorother nurse. I never see her name written down, but I get the feeling her name is spelled with a 'y', not an 'i'. She's friendly as can be; she greets me, introduces herself, gives me a gown and a cubicle to change in, then if I could just wait on the blue chair in the hallway, she'll come and fetch me in a few. 
I wonder how many people have worn this robe before me. Had to strip down to their pants and wear this open-backed blue cliche. It's thicker than I thought, which is strangely comforting. I think about how vulnerable it makes me feel. I must be at my most vulnerable, for them to see inside my mind. 

I had one MRI before, not too long ago. It was horrible. Unexpectedly I was just put in there like a sad enchilada that needed a few minutes in the microwave before it could be consumed. That simile got weird. Sorry.
I was given a panic alarm to squeeze if I didn't like where this was going or if my titanium earrings suddenly by some miracle became magnetic and flew out of my ears, and a set of clunky old headphones to blot out the 'noisiness'. I wasn't aware at this point that MRIs made noise. And now I've heard their signature song, I'll never forget again. 
UUHHMM UUHHMM UUHHMM UUHHMM / DDDDHHHGGGGRRRRRRR! / BAAAHH BAHHHH BAHHHH and so on. 
I hear these delightful noises through my staticky headphones that play snatches of Heart FM.
'THIS is HEART!' I hear snippets of DJ banter, one-liners in adverts, a generic upbeat Buble ballard, and then 'Counting Stars' by OneRepublic, immediately followed by something totally incoherent until I hear 'don't you worry, don't you worry child - see heaven's got a plan for youuu.' I wonder if the artists ever thought their song would be playing through staticky headphones for a weeping girl in an MRI machine. 
Oh yes, by this point, I'm weeping. I don't know if it's the painfully obvious message in the song, or the fact that I'm all alone and frightened in a tube for half an hour (they have to scan me twice, apparently, they explain through my headphones, totally ruining the aforementioned obvious song), staring at the blank creamy ceiling and trying to ignore the ticks and involuntary twitches in my arm, and the fact that after this I'll have no-one waiting for me. No-one to give me that all-important post-scan hate-hospitals hug. No-one to tell me how brave I was.

This time however, my dad is waiting just outside and that makes all the difference. Alyson asks if I'd like Heart FM played through my headphones, or a CD her fourteen year-old son made for patients. I ask for the latter. It's the Red Hot Chilli Peppers. Now, MRI scans take approximately 15 mins, so by the time track 6 comes on, I'll be done. In the meantime, I'll focus on the lyrics and think of what I'm having for dinner. 
Standing in line to see the show tonight and there's a light on... 

My eyes are squeezed tightly shut, because I have it in my head that closed eyes = safety. I wonder what else I have in my head.

Alyson fitted me a bizarre white plastic Darth Vader mask over my face, with a periscope-type mirror just in front of my eyes so I can see a) my knees poking out from under the blue gown safely outside the machine, and b) the doctors behind the blue-tinted glass wall watching at least four different screens, all with me on. It's slightly perverted really, isn't it? They're looking at my brain. My sacred 'me' space. I thank heavens almost every day that nobody can see my brain, hear my thoughts. Imagine if they could hear my thoughts, right now. 
...Hi, docs. What's wrong with me? 


05, 2014.
My mum is cutting up my food. Poached eggs on toasted mini bagels, slices of white chocolate and raspberry cake, my Verdura pizza at ASK. She carries my trays, writes in my diary for me. She insists. It's kind, it's just motherly care and that innate need to help, and I'm so grateful for it. Dad, too. He's my chauffeur, my walking stick, he even ties my shoes. My sister fetches me things so I don't have to get up from the sofa. My family are wonderful. And when they're not there, when I'm in my second home, I have my adopted honourary family. My boyfriend, my big bro, and my older sister - okay, so the latter two just got engaged so they're not actually related because that would be weird but whatever. They take care of me. My boyfriend holds my hand, in the usual loving way - but also to stop me walking into things. My big sis texts me constantly, and the bro hugs me when I most need it. I watch stupid TV, and have my meals cooked for me; I get a call from my dad telling me to come home and they're already pulling on their shoes ready to give me a lift to the station. We have dinner the day before payday, arranged at the last minute, because I have to stay at home for a while and I don't know when I'll be back - and damnit, I need my Dim T. And my besties. 

The train to Waterloo, the train I've taken so many times before, was full of people just going about their daily lives, as if nothing was wrong. As if they weren't sitting across the aisle from a broken girl with a troubled brain.
'They found something on your scan. The doctor wants to see you tomorrow morning, so you have to come home tonight.' 
The train guard comes to check my ticket, sees me silently crying, and swiftly moves on without even looking at my open return in my pretty little Cath Kidston ticket holder - a new purchase, another necessary impulse. The guard saw me crying and didn't check my ticket. Noted. Guys, cry on trains. You get all the special treatment. 
I'm meeting my dad at Waterloo. Maybe we'll go to Benugo for coffee, like we always do. That'll be nice. A touch of the ordinary to make a change from the rough unforgiving hands of the new.
We sit at Benugo, but don't order. It's busy here, too, but those people soon disappear. Dad cries. I cry. I laugh through the tears. We hug. We cry some more, loudly. It only occurs to me now that some happy coffee-drinking commuters may have noticed. We may have put a downer on their evening coffee break. 

A growth. It's a nameless faceless growth. It's on the left side of my brain, which is why the right side of my body has been so odd and prone to cock-ups. The LEFT side of your brain controls the RIGHT side of your body - and vice versa. I may have read that somewhere once, but I forgot. The body is a mystery, a magical thing and occasionally just an annoyance. It lets you down. But hey, it can't support your crazy caffeine buzzes and mad impulses all the time, right?

Nobody's used the t-word, or the c-word. Or the q-word. Okay, there is no q-word in this situation, but still. There are a lot of q-words, and I fear they'll be overlooked. Homework: find some q-words and use them a lot. Even when they don't make sense. That's even better.

My best friends make jokes. So many jokes. 'Last words' jokes, 'baldie' jokes, 'stealing thunder' jokes. My boss even cracked an 'alright Britney!' when he found out I could be shaving my head. 
And I actually really need that right now. More than the sympathetic Facebook comments - make a joke! I've started to - it's all I can do! 

I want to cut my hair. That's my second thought, the one right after 'fuck, what am I gonna do?' I want to cut my hair off for charity or something - I'll set up a JustGiving page and be one of those Facebook friends who spams you all the time. The doctor may have to spoil my fun and shave my head himself, but whatever. I can finally get that Anne Hathaway pixie crop I've always wanted. It won't suit me at all, but I'll dye it wacky colours and cover it with bright headscarves and nobody will even notice that my face isn't pixie-like enough. Silver linings. I am all about those silver linings right now. 

My Grandad tells me to pray to Jesus. My mum rubs her Buddha's belly. My aunties in Australia send positive vibes. My friends who I've texted send virtual hugs. The lovely and infamous Sarah White tweets me to let me know I am in her prayers. We're pulling in all the faiths, and all the favours. 
Me? I'm wishing on stars. There might be a fault in mine. 


9 comments

  1. Gracie, this is SO beautifully written! Brought a tear to my eye! What a nightmare this has all been, I really hope everything works out. It's so nice to know you have such wonderful people around you. Keep in touch, hugs hugs hugs xxxxxxxxxxxxx

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  2. This is so well written Grace, it actually made me cry here!! I would read this in novel-length if that was something you were to do, you have a real gift for writing!!

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  3. Gracie, this honestly made me cry! Sending you masses of love. You're incredible. And please please please dye your hair ridiculous colours and get a pixie crop like Anne. You know you're tempted anyway. Sending happy thoughts, chin up beautiful x

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  4. Never have I ever or could I ever have seen that behind your charming self you were hurting. I'm sorry Grace. We spent a whole semester sat on the same table and I didn't see your hurt. I'm so proud of you for your silver linings and as a side note I disagree; you'd look hot with an Anne Hathaway/Emma Watson haircut. Stay in touch with your instafriend. Xxxxxxx

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  5. There are no words to describe how sad and amazing this is, its wonderful how you can stay so strong and laugh about what is happening. Its just a shame that, with everything your going through, the hospital makes you listen to Heart (worst adverts EVER), but giving you the mighty RHCP makes it better. I really hope you get well soon, if you need anything just ask xxx

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  6. This is so beautifully written and hey at least you got to be Darth Vader for a while, can't beat a bit of star wars! Seriously though, all the best sweetpea! xxxxxxxxxx

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  7. Grace. You don't know me but I know a lot about you having worked with your Dad for 12 years. He passed me the link to your blog and I hope you don't mind me commenting. You write so well and with such a great attitude! As the saying goes...............'The human spirit is stronger than anything that can happen to me'.............., and your words say exactly that. Keep up your positivity; let your family worry for you, look after you and be your back bone; keep smiling and laughing with your family and friends and the light hearted jokes rolling. You are in our thoughts and prayers at JPM and we are sending loads of positive vibes your way. All will be well hun. Lucy x x

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  8. I don't know you, but I remember finding your blog awhile ago and reading it :) I saw some of my friends sending you kind wishes on Facebook, which led me to this post. Your writing style is wonderful, and you're so brave. Take care, and I hope everything goes okay for you xx

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  9. Hi Grace, my colleague Jo shared your blog with us this morning at The Brain Tumour Charity and I am in awe of both your writing and bravery, through everything you have been through. I wonder if it would be possible to arrange to chat on the phone or arrange to meet up over the next couple of weeks? I am the Children and Families Worker at The Charity and am also setting up a Young Ambassadors Scheme for young adults who have been affected by a brain tumour, and I truly believe that you would be an asset to our team. My e-mail is Elissa.Coster@thebraintumourcharity.org and work number is 07876 685404. Hope to hear from you soon. Take very special care of yourself, Elissa

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