JOY

I see myself. I am an observer. An ordinary holiday maker laying stretched on a white plastic sunbed; my towel scrunched beneath me, my hot cheek stuck to my hand as my head rests upon it.

Marinating in Piz Buin my ears are filled with 80’s, 90’s, keep going, pop songs. A paperback; yesterday’s pages crispy, today’s pages damp, is visual on top of my beach bag – Primark – £6.99 – more than I’d wanted to pay for a throwaway but it has adorable pink pom poms dangling from the handles.

Sauntering toward the pool, in a fitted floral bikini, I’m not self conscious; I’ve had a full leg wax and Brazilian. I’m slim in a comfortable way. My hair is styled in a short wavy bob. I look down at my feet; my nails are painted in Russian blue. I love them.

I linger at the poolside appreciating the hot sun baking me nicely at 39 degrees whilst I search out my children among the bobbing heads. Caitlan and Paddy are negotiating a gigantic rubber ring; laughing, plunging, splashing; their factor fifty legs and arms entangled. With large green diving goggles suctioned to their faces they are the sweetest frogs I’ve ever seen. They wave madly at me. I return with an SOS wave, smiling so wide there’s no posing for cool selfies here. I like my smile; the sensation of its corners stretching up and outward. I don’t care if I’m inviting wrinkles. I want a face that’s lived, not a smooth, alabaster bust capturing a version of me.

Leisurely swimming, my arms stretch out wide in a circular motion and my knees come together propelling me forward. I feel the strength in my limbs. My stomach muscles tighten as I surge back and forth. Twenty lengths – easy!

At the deep end, folding my legs, I use my hands to wall walk to the pool floor. I resist my body’s instinct to float up. I sit cross-legged, holding my breath, enjoying a moment that’s completely mine. Until I see a set of Russian Blue toes that match mine. Submerged I pull Caitlan’s leg. Surfacing I meet her mischievous green eyes; she constantly looks like she rolled down a hill, she’s bursting with adventure. Paddy’s face pops up over her shoulder. His smile is totally disarming. A friend To Everyone states a school certificate on the fridge door back home. I hold my hand straight and stiff, the thumb resting against my forehead to form a shark fin. I hum the soundtrack to Jaws and the games begin.

They play water polo. My husband is ultra competitive. He lunges for the ball, throws it to Paddy who tosses it to Caitlan who scores; she is her father’s daughter.

Resting my back against the pool side, the tiles rough against my skin, I look up at the glorious sun; its heat rejuvenating. I want to bottle this moment. I could selfishly say I wanted this minute to last forever but then Caitlan and Paddy would be 14 and 13 eternally.

My husband swims toward me. I like how he looks in sunglasses, his hair wet. Putting his arms either side of me, we kiss. It’s slow and tells a story. A marriage, not made in heaven but made from sunshine and rain.

Reaching up to the handles of the pool ladder, I put my foot on the first step and feel the muscles in my arms tense as I pull myself up. Water falls from me. I run my hand through my hair, droplets race down my already hot back.

“Race you!”

I’m running with my husband, to the beach, the kids up front. My breathing synchronizes with my stride. The grassy ground, hard-baked and cracked by the intense Turkey sun, is beneath me. Running is my thing; I fall into a comfortable rhythm. I’m connected to the earth, to the infinitely clear blue sky above me; In my own way I’m beautiful: my strength, my gregariousness, I make every day mean something.

My husband passes me, he becomes a dot in the distance, I can’t see the kids and I feel a tightness across my chest and a hoarseness in my throat. At the beach bar I’m breathing hard, bent over, puffing out a stitch. My family are in the sea, jumping over waves with frothy white crests.  I look a little mad but I’ve an aura that catches the attention of the odd passer-by.   For a brief, infectious moment they too feel carefree. My happiness is contagious.

Sitting at the beach bar, my throat a little raw from running, I enjoy a cappuccino. I recall the night before. Our early dinner to avoid the all-inclusive rush hour  The amphitheater sipping mojitos and tequilas with rainbow umbrellas pierced through limes and oranges. Below us, the stage with twirling mini princesses. We played gin rummy, twenty one and traffic lights, serious stuff with Euros at stake. Something niggles. I hadn’t won a game. I couldn’t keep track of what card, what suit, went down.  Me the master cards woman outwitted by teens?

After the entertainment, the kids meet up with their German friends and we follow them to the beach disco. They are not shy – I like that about them; there’s no awkwardness. They prank around and dance in a circle. Pop and Garage beats out, its base shuddering through my feet and upwards. The kids jump in unison, arms punching the air, singing along, chanting. I notice the tall blond boy; he’s playfully pushing Caitlan around.  I see the first spark of attraction between them.

I glance nostalgically at my husband. His eyes reflect a nineteen year old girl, in a bright red dress, playing pub darts. She’s at the bar counting coins from a pink, soft leather purse she purchased in Greece. He cheekily chats her up. He’s confident; she finds him alluring. He’s says his name’s Tinker.

Hips swaying, shoulders shimmying I’m dancing and I feel on top of the world. I look above at the glitter balls and the pink and blue LED disco lights and WHAM and DURAN DURAN pop randomly to mind. Tinker pulls me to him and we move in unison. Thirty years and we’re each other’s shadow. My head nestles into his neck. I kiss it gently. I’m still in love.

I think I’m tired, too much sun perhaps. The music becomes an aural assault. The glitter ball stings my eyes.  Walking to the chalet the kids tell me the night was bangin’ but their voices are distant. Their is a nagging persistence in my brain that all is not well; nothing it what it seems.

I see myself; the rose tinted glasses removed. I’m the same but different. Still the short wavy bob, but my frame is fuller, my poise diminished, my posture stooped but the easy smile flickering at the first glimpse of my family is me. My heart is still huge but my head is muddled. My body is awkward. I laugh; it’s warm and real and I feel comforted by that.

I’m putting sun lotion on Paddy’s back; it’s what mums do. My arms feel weakly heavy; they are alien to me but I continue to rub and I massage a little into his ears. He’s so gorgeous, I want to encircle him in my arms and keep him safe; always.

A member of the animation team spots us. He knows Cait and Pad. Yesterday they went paintballing with him. He’s a bit of a joker. He’s young, about 26, his nose is large but it suits his face. He has a six pack and is hench as Caitlan would say. I note a glimmer of interest in his eyes; he’s not sure what to make of me, of us.

“Hey Paddy, Katrin (he can’t pronounce Caitlan), hoopa hoopa it’s pool games.”
In unison Paddy and Cait scramble off their sun beds and join the forming crowd of teens and menopausal men.

Tink is already in the pool. Shit! Getting off the sun bed, without help, is a feat in itself. I turn onto my side and raise my outer leg toward the ground – my bottom is now upright and on full HD view; wide angle). Straightening takes a while. The muscle spasms, the rigidness at my joints, the pain that’s deep in the marrow of my bones, make moving exhausting.

Yeahhhhhhh – I’m upright – independently; joy!” I’ve begun to talk to myself.  It began as quick, motivational comments and now I mutter most of the day, often incoherently.

Squatting I retrieve my camera from my bag. It’s not lady-like but I can’t bend over; I get dizzy and fall. “But it’s hard getting up from a crouched position; very stressful on the knees.” See! I’m talking to myself again.

Chart music vibrates from a large speaker, it floats into my ears and beats in my heart, I feel light and elevated and young. I linger momentarily and embrace it. My hips sway gently. I yearn to dance so fucking much “But it’s difficult, my legs beat to their own drum now”.

I reach for my cane; my fingers are stiff, it’s hard to grasp. Walking slowly toward the pool, I consider each step, it’s a slippery surface, I teeter then regain balance.  My gait is unusual. I see sunbathers speculatively watching me.
What do you think is wrong with her?” they ask in hushed tones “MS, Motor Neurons, Stroke”; they’ll never guess; on holiday with little to distract I’ve become the center of attention. “I’m a celebrity. Cool!

Sitting on the poolside, my legs dangle in the water; they are lean no longer – such a shame. My husband swims over and lifts himself out of the pool.

You’re scaring the holidaymakers,” he says abruptly.  He’s not impatient with me, his voice just always sounds abrupt, a little rude,  He’s telling me I’m at it again.  Giving a running commentary to my life.

I look straight ahead and feel the increasing pressure of keeping my head upright, unsupported, only a neck brace, between me and pain. Paddy is racing across inflatable stepping stones. He’s a whippet in neon orange shorts. The way his body moves, hia quick reflexes astonish me. He’s on video, I rewind and watch, again and again!

Caitlan is so cheeky. She was out first round but no one noticed. Now she’s in the final of the ‘Spoon Diving Competition,’ with two bulky Belgiums wearing inappropriate shorts. We all know only Daniel Craig does Speedos.  I watch her, she’s got a killer look, her toes just touch the edge of the pool and she’s leaning forward. She has a glass hour figure; her legs are strong and tanned; her flamingo bikini is perfect; feminine but modest. She glances at me and I give her the thumbs up; she’s already a winner. I love her so much I can barely breath.kittyme

My husband assists me to my sunbed. I’m a disaster: my leg dragging, my fingers involuntarily flicking, my neck hunched into my shoulders. Sitting on the edge of the plastic bed, I’m withdrawn as he covers me in sun screen. I say something benign, to fill the silence of reality, of disability. Something about getting a full flush at cards tonight.  He says something equally meaningless, yet his pause speaks volumes.  We  both know I’m not the wife he chose.

I lay stiff; an embalmed mummy unable to alter position.  I lose myself in music: Latin, Maroon 5 and Eur. I retreat to a parallel universe. I’m the old me, gracefully leaping from one inflatable step to another. Paddy is behind me but I’m too fast, I stick my tongue out at him and leap for the sky and plunge into the water.

“SICK!”

I’m plunging to the bottom of the pool, waiting for the bubbles and white water to settle. Where is that spoon? My heart is racing and I’m struggling to breath. My lungs are bursting but as I spot the spoon excitement oxygenates me and I grasp it tight to my chest. Resurfacing, the animation team clap and my husband gives me that look and I know in about ten minutes we’ll be naked somewhere…but it’s SciFi.

I’m tired.

Walking from the pool to our room is wearing; the day takes its toll. Friends don’t always understand…that when I’m with them, that’s my best genre; Chick Lit. Behind the scenes I’m Drama, Thriller, Horror. Pregabalin, Amitriptyline, Tramadol,  Naproxen, Oxycontin; my hand trembles slightly as I pop pill after pill. I’m a rerun of Trainspotting.

Our room in spacious with two sets of twin beds divided by a lattice partition. We take turns in the bathroom getting ready for dinner. I sit on the wall of our patio; the kids intermittently appear with a snippet of information about endangered animals (satellite T.V.).

You look pretty mum.”

It true I’m wearing a green emerald dress that cups my breasts, comes in at the waste and floats round my legs. My skin is golden. I look a picture of health.

It’s still hot; we walk together toward the restaurant. It’s ironic that the hotel gardens are home to tortoise. I watch Shelly move, each step she plods is laboured. ‘Forest Gump’ comes to mind. The impulse to drop my cane, pull my arm free of my husband and run, strikes from nowhere but I swallow it. Instead I move closer to him shutting out the loud voice in the silence, “Run Alison, run!

Dinner is always a success. I absolutely love all-inclusive. I sit at the table and Patrick places a dinner plate in front of me with tasty morsels from seven continents – of course noodles go with chicken tikka! I look at my son who thinks of me before himself and I feel joy.

Getting food from plate to mouth is taxing. I’m grinning because my meatball rolled across our table and onto the floor; oops! I look at Kitty, she spotted my misdemeanor and we share a secret smile.

Laying motionless in bed, my husband asleep long ago, I feel sad. I live a life I didn’t choose.  I won it in a game of fate. My bones are hollow, dry, brittle, dusty. I was born with this malformed spine, with its missing discs and fused vertebrae, that sits in a spinal column that’s too narrow, where the cord is pinched and compressed. My heart tightens; my husband and children didn’t chose this life either.

Tomorrow we go home. We say goodbye to adventure, to a hot, burning sun, to soft golden sand, to pool games and teenage romance. I say goodbye to me.

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UPDATE!

Feel quite guilty that I haven’t blogged for a while, but this self promoting business is time consuming. However watch this space. 🌸 Or even better download my book so I can catch my breath. No refunds…couldn’t cope with the admin 🤣🤣🤣🤣 Just kidding, you’ll love it, RANDOM ATTACHMENT is WICKED, ACE, PENG, SICK, LEDGE

The Agent

I guess we write for different reasons.

Me? I was desperate. I needed to escape from my bed, from my pain and immobility.  My daughters said write a book, about an assassin and an orphan.  A man who could dip in and out of right and wrong.  A girl plagued by bullies with hair extensions and lip fillers.

There was no plan, no character analysis, no plot, only a focus to get up every day, shower, sit at the laptop and type.  The word organic is so overused but that’s what it was. This natural ramble, through lives of people I would like to know, and others I hoped never to cross. There was nothing high brow or complex about my words.  They were distractions from pain and a loneliness I never wanted to share with my family.

henry front coverHow did I come up with my protagonists names? When I turned my laptop on Phoenix would flash in the bottom, left corner and Whittle was the first pop-up in my brain.

Phoenix Whittle; it felt perfect. Henry, a name ones associated with a solid citizen not a special forces hitman.

Writing felt comfortable; pain easing. I’d spend three/four hours a day with Phoenix and Henry.  They became as real to me as my family.  I love them.

I had bad days. When my fingers wouldn’t work. When brain fog blocked all creativity. I remember as my third spine operation loomed I felt panicked that if something went wrong my novel would be lost.  I finished it about two am before leaving at 5am for the hospital.

It was a month later that my daughters said send it off.  Like it was the easiest thing to do.  I’m not a researcher, I never will be. I leap, I don’t look. I’m inpatient.  I spent about half an hour googling how to get published before getting overwhelmed.  If I was to do this I had to make it easy on myself. I wrote a naff query letter.  I’m not great at selling myself or pretending to be something I’m not.  I have very limited energy. I have spinal cord damage and making a cup of tea is a challenge. Getting an agent seemed an insurmountable challenge.  No one was more surprised than me when agents began requesting the full manuscript.  I still got a lot of no’s…until one asked could she ring me to discuss representation.  We chatted; hearing someone as excited as me about Henry and Phoenix had me ecstatic.

We met at a patisserie in Notting Hill Gate.  I’ll never forget it.  I had no clothes…really.  I lived in pjs and lounge wear.  I had to get a whole outfit, coat, shoes, the lot from NEXT. I hadn’t traveled unassisted in 5 years.  My daughter came on the train with me and helped me up the station stairs.  I told the literary agent I’d be in a pink coat and she said she’d have red lipstick. I was nearly combusting with excitement. I won’t lie; I saw Waterstones and nearly keeled over imagining my novel on display.  I was so naive.

We ordered drinks; I desperately wanted a pastry, a sugar rush, but was too nervous to eat in public.  She was lovely, not intimidating, but confident and cultured.  Her enthusiasm matched my own and when she offered representation, I knew this was probably a once in a lifetime opportunity.  I’ll always remember the fun I had saying ‘my agent’; it was mad.

What comes next I hold myself totally responsible for.  We spent about seven months editing.  There were times when my gut told me no, this isn’t what Henry and Phoenix are about. My silence led to a dilution of my characters. They lost that rawness. The completed novel was in many ways improved but sadly tame.

Editors at Penguin, Bloomsbury, all the biggies, were queried and read the manuscript with interest.  The no’s came quick.  The feedback was positive, but they felt Phoenix’s voice wasn’t strong enough or it wasn’t dark enough.  I wasn’t too put out. I don’t think I ever expected the route to publication to be that easy. I thought we’d go forward and rebuild but a distance emerged.  It might have been my imagination but I felt I’d been passed over for the next bright spark. We’d had a meeting and my agent spent more time talking about her latest discovery than Henry & Phoenix.

IIMG_0314 decided to take a break. Which lasted about a week. I had the bug so I continued with a second project I’d begun in between editing Henry Whittle.

Random Attachment had me seriously questionning representation.  It was quickly obvious my second novel was going down the dark route…borderline Young Adult/New Adult – not suitable for under 14’s. A route I new my agent wasn’t comfortable with.  So I emailed her and called it off. What upset me was, not saying adios to getting published, but cutting myself off from the first person who believed in me as a writer. It was like I was ungrateful, but if all I have is my writing, then I can’t compromise.  It has to be my words, my way.

I miss our emails, our patisserie meetings but I feel like I’m running through a field of barley, the sun on my back.  My legs don’t drag when I write.  My head doesn’t hurt from nerve damage when I’m with Mia, Flynn, Phoenix and Henry…my Henry.

Then there’s you: WordPress, Twitter, Facebook, the Writing Community.  Just tonight I found another writer in my genre just starting her journey and I feel excited for her.  I want her to write a brilliant query letter, to find a champion for her work. Yes get edited if it’s within your budget but don’t rely totally on others to make your dream reality. If you gut speaks…listen…talk up. Don’t make my mistake and put the responsibility of success on your agent’s shoulders.

And if you can’t afford editing before submitting your work don’t let that stop you. If your premise is original and your characters solid you have as good a chance as anyone else. Be daring. Share your writing with as many as you can.  Feedback is like gold dust. Self publishing is rewarding and confidence building.

My main advice is this: enjoy writing; don’t chase the money or prestige. x

Jafaris myelopathy & me

It’s midweek and I’ve been yo-yoing between conquering social media and hiding under the quilt. Editing one book and trying to sell another. Wobbling about the coffee shop to whaling on the sofa. Oh and going to the loo like every fifteen minutes. Kids, Music, Marriage, Writing, Two Barking Dogs and Books are my life.  Here’s my latest vlog, that I’ve edited badly but life is one long lesson https://www.youtube.com/watch?v=dXuDkpZeg84&t=91s

 

Merry Christmas

Christmas is a funny time for myelopathers.  Maybe some of us feel under pressure to produce the perfect Christmas day and are already stooped in pain and it’s only Christmas Eve. Maybe others isolate themselves because they lack the energy to get dressed and join in with family.  We say ours is a hidden disability but I think that is sometimes an excuse we make because our families lack empathy. When I move it’s all too obvious that something is amiss.  The pain of course invisibly attacks the nervous system but I think it’s evident in my grimace and the way my body caves inwards that I’m suffering.

I don’t personally know any of you…but I think about you…my friends united against this horrible degenerative disease.  I hope that your family and friends are kind to you, that they rally round you…that they understand your limitations.

I never imagined seven years ago when I was diagnosed that the battle would be this huge, this gruelling, this demoralising.  If you’d asked me then was I coping…I’d say there wasn’t anything I couldn’t conquer.  Right now I feel like I’m at war with myself. I’m a person I don’t recognise.  I’m jumpy, anxious, easily upset, unable to form coherent sentences, all weekend I’ve called Kitty’s boyfriend Jack when his name is Zac.  He’s such a dear, he worked out that becames my other daughter’s partner is James I was mixing the two together.  I can’t remember anything.  Historically it’s been my husband who upsets the apple cart, right now it’s me…which adds to my guilt.  Other than being in constant pain…I’m ticketty boo.

Regardless of everything I have just moaned about I couldn’t be happier.  On Saturday I sat enjoying a Christmas lunch with the five people I love most in the world.  I used to say to them I love you more than all the desserts in the world, all the seas and when I look at my husband, sons and daughters I know I am the luckiest person.  They totally get me, they know the ugly side of me and they do whatever they can to make me as comfortable and supported as anyone with a painful disability can be.

And I want that for you all this Christmas. I think right now if you feel unhappy or distressed you should stop doing what you are doing.  It’s better to have beans on toast and feel as well and as happy as you can be.  If your family are taking you for granted and letting you dig a hole for yourself tidying and cooking you owe it to yourself to say no this is to much, no I’m not coping.

I’ve had serious mental health issues this year.  I’ve never been so glad to see the back of of a year in my life.  I’ve nearly ruined Christmas; I just managed to pull myself together for the family meal. I know I need to keep communicating with my family, to admit when I’m in pain, to not physically push myself because I’m gaining weight which I hate.

Yes I’m disabled, yes my life is very limited, but I can’t expect others to know how bad I feel if I don’t tell them. It’s my responsibility to ask for help.  I owe it to my family to ask for help.

I’m taking control of my life back by escaping into writing, by blogging and now vlogging.  I am going to shout from the rooftops that I feel like I’ve been twisted inside out I’m in so much pain, that’s what cervical myelopathy does to you…But there is always hope and sunny days ahead.  Great things are ahead of us.  Be vocal. Cry. Sing. Argue…but don’t suffer silently.  You deserve better.

Happy Christmas myelopathers.  Thank you for being there for me through https://www.facebook.com/groups/myelopathy.support/ Thank youhttps://www.facebook.com/myelopathy.org/   I intend to raise money through Jen’s bookclub The BB’s, who are so brilliant with me, my book sales – if anyone needs a present for 14+ to adult ladies please buy Random Attachment, 10% of royalties go to Myelopathy.org and 10% to YMCA West London https://www.amazon.co.uk/RANDOM-ATTACHMENT-Gertrude-T-Kitty/dp/1790375347/ref=sr_1_3?ie=UTF8&qid=1544651916&sr=8-3&keywords=random+attachment

And lastly if anyone wants to get to know me better and my take on myelopathy please check out my youtube channel https://www.youtube.com/channel/UCwao3_-p4ISUoWlVOhZYnsQ