ShoeStrings

RUNNING A DIFFERENT ROUTE.

 

 

By Emma Gee

 

 

 

Running in the rain, dodging puddles or cracks underneath me - I used to love the flying feeling it gave me – I was a bird and would fly around the neighbourhood, earphoneless, to ensure I could still hear the reversing cars and eavesdrop on strangers’ conversations.  Running was my ‘time out’, my locked realm where I was the only key holder.  Family feuds, complicated patients and boyfriend sagas would diminish, and, as if lightened with each step, I left them for the hard rubbish collection on the nature strip.

 

 

Now I can no longer fly. My wings are clipped. At 24 I had a stroke. A healthy, active and innocent neuro-occupational therapist, I now had dysphagia, dysarthria, nystagmus, diplopia, sensory, balance and mobility deficits. In plain English: my speech sounded as if I was talking with 100 marshmallows stuffed into my lop-sided mouth. My double vision cloned every image - one car expanded into two.  My left hand clawed in - like a scared turtle hiding in its shell. I felt as if I was permanently on a hook. Dangling! Touching the ground so lightly only on my tippee toes. My head wasn’t positioned correctly. It was as if, in my neurosurgery they had unscrewed my head and put it back on wrongly. I was a Tupperware lid that had gone in the dishwasher too many times and no longer fitted. My skin way too tight – the surgeon had put it in the drier. Shrunk! I now had to squeeze my outgrown body into this incy wincy case.

 

 

Instead of getting a bird’s eye view of life, I was forced to be amongst it - allowing others to wheel me, no longer free, my wheels were  unable to manoeuvre as my feet once did.  My frail body could no longer adapt even to the single pebbles or random sticks I encountered . As a stroke victim, captured, clipped and caged, I longed to run from my wheelchair…

 

 

The muscle aches resulting from long runs were replaced by ‘phantom’ or ‘imaginary’ pain. Jibbed. A Christmas bonbon gone wrong. Skidding on hot bitumen.  Grazes. At least as a child my tears soon disappeared after I’d been to sickbay, Dettolled, Savloned and bandaided. This wasn’t ‘real’ pain. Dencorub couldn’t mask this pain!  Attempts to escape my pain, by medication, only exacerbated it. Attempting to climb the barbed wire fence, the prisoner always gets electrocuted!

 

 

Six months on I learnt to walk on a frame. The fatigue I’d felt after 15 km runs, I now experienced after five metres. However, being upright gave me the taste of freedom that I’d once had. An exercise yard at a prison.

 

 

A medical appointment in the city became the perfect opportunity to trial public transport with my frame.  I thought catching the train would be so easy.  A cinch.  BEFORE, I could have run this route blind-folded! Declaring my intentions to my parents, however, signalled a major battle. “You’ll break a leg… this time you’ll be doing rehab alone!” And later “… If you must do it, do it with your mother!”  Even with Mum accompanying me, they felt that I was setting myself up for failure. Maybe I was, but at least I was attempting it. My parents were saying catching a train was too dangerous! Imagine if I had been on drugs!

 

 

Pointing out what was so scary for me even to attempt was a huge slap in the face.  To verbally declare my intentions was so hard - even harder when I knew that the likelihood of success was low.  So now I not only had to physically disprove the validity of my doubts but the validity of my parents’ doubts as well.  I tried to angrily slam the car door but it was too heavy.

 

 

It’s no fashion parade going out on a frame!.  Eye gel replaces eye liner; lipstick only magnifies the deep crevasses in my sore lips.  I no longer require a handbag or a boy to accompany me. I was now attached to a catheter and hey who needs a boy when you have a physio!  My endless wardrobe was now a waste! It might as well have been full of PJs and tracksuits. Work shirts, I couldn’t button or iron; my balance wasn’t ready to be challenged with heels, and there was no need for a name tag to identify myself.  As an identical twin, this had been a compulsory item throughout my childhood. We only swapped to trick. Now, I couldn’t move quickly enough to get lost and I didn’t need to be labelled – my disability was now as identifying as a named freckle.

 

 

Mum parked the car while I tackled the endless ramps leading to the platform. First the declining slopes!  I had once run downhill, arms out like a plane and eyes closed.  Now, I tried to test out my running coach’s theory that shifting your weight backwards helps.  Disastrous!  Instead, I ended up squatting to prevent somersaulting down.  To onlookers I would’ve looked so strange, almost constipated.  Concentrating on every step.  Poking my tongue into my cheek was meant to help!  A few times I grabbed the rail to stop myself from flipping.  All I could see and hear were feet. Heels, sneakers, heels. Heels. All walking with ease. Two out of the fifty people that passed asked if I needed help.  To the others I was invisible, or they were just too busy rushing to make the train, vegemite toast or mobile in hand.  Me - brain dead before even beginning my trip.  The two other ramps inclined - a lot easier, but they would be so hard on the return trip. I couldn’t think about that. One step at a time!

 

 

We were getting the 8:19am train. We’d chosen a “stopping all stations” to reduce the pushes ‘n’ shoves. Waiting on the platform, I must’ve looked as if I was starting a race, my frame positioned at the very edge of the yellow line.

 

 

Getting onto the carriage wasn’t as easy as I’d imagined.  I had to position myself up behind the yellow line, so that when the train stopped I’d get on.  Not so easy.  My attempt to line myself up failed. The doors opened and before I’d even crossed the yellow line the ‘beep beep beep’ sound had come over the loud speaker and the doors were about to shut. My frame was on the carriage.  I was still on the platform.  Mum, stressed at the prospect of her daughter falling down the black space in between yelled, “JUMP ON EM!”. Calmly I replied, “I can’t jump Mum!” At that moment I wished I was in a comic strip and could be in both places at once - my body in segments.  Silence!  At those times there is always dead silence.

 

 

I monkey-barred on. My knuckles white from strangling the silver rail, my eyes struggling to adjust to the light change.  I used to stand so the ‘elderly’ or ‘people with special needs’ could sit.  Now it was my turn. I plummeted into the seat.  Once I would’ve checked the seat for syringes or chewing gum.  Now chewy would assist my sitting posture and I’d had so many injections, one more wouldn’t hurt.  As a kid, I’d always been amazed at how your eyes flick back and forth trying to capture every passing image – graffiti, different people, traffic lights, fast cars, trees all blurred.  Now my nystagmus (flickering of the eyes) felt normal.  Since my operation, my eyes had raced. It was the only body part that moved quickly. Two images, both racing.

 

 

The carriage smelt like a combination of sweat and fly spray.  I could almost taste it.  At least sitting in the ‘special needs’ seat, I didn’t have to contend with large bodies, strange food, bags, feet and weird conversations. Isolated, like an odd sock.

 

 

A schoolgirl sat opposite me, reading ‘To Kill a Mocking Bird’, a novel I had read and studied.  She was a nerd.  The extended academic strip on the left pocket of her blazer, long, ironed dress, and braided hair were proof! As a stroke victim, finding flaws in others was gratifying. Their imperfections were temporarily the focus.

 

 

Another lady entered the carriage at the Hawthorn stop and sat to my left. Strong perfume followed her like a stray dog. She was wearing her sunglasses. I immediately pulled mine down from the top of my head; permission granted. Now I would get fewer stares.

 

 

A small child tugged her mother’s dress demandingly. Her eyes seemed super-glued to me, as if I might swallow her if she lost track of me, “Mummy, why’s that girl got that thing?”  She pointed directly at me.  Her mum, embarrassed, grabbed her out-stretched hand saying, “She needs it to walk Sweetie. Now don’t stare”.  I hate that kids highlight out loud what adults think!

 

 

 An elderly woman standing on the trampoline surface, clearly  showing off her good balance, saw me reaching for my bag at my feet and said, “Do you want help Dear?” Stubborn and knowing that the help I’d need was endless, I replied, “No thanks.”

 

 

A bearded man then approached me, “What’s wrong with you?” and then loudly, “You got MS?” Shocked by his bluntness all I said was, “No!” secretly hoping that my concise reply would imply that I didn’t want to reveal my medical status to a stranger…let alone the entire carriage.  Perhaps my frozen facial paralysis expression misled him, because he went on guessing. “It’s muscular dystrophy isn’t it?”  And then even louder and slower “Ummmmmmm ummmmmm, I know!  It’s cerebral palsy!!”  He was almost excited by his diagnosis.  Knowing that he would continue quizzing me with a hospital full of diagnoses I said, “I had brain surgery a year ago”. I was too embarrassed to say that I’d also stroked at 24! He would then assume I’d once been a couch potato, french fries freak, smoked and got drunk. My intention to shoo him away with my remark, boomeranged. He interpreted it as an invitation. He sat down next to me. He was not physically impaired. “I’m a retired doctor and a born-again Christian”. Now I knew he was weird.  I turned my head. Three more stops to go. He continued to talk at me, “Blah, blah, blah, blah”.  He wasn’t wanting a reply.

 

 

The train stopped, nearly catapulting the carriage and leaving its occupants with whiplash. The doors opened. A white cane zig-zagged onboard, followed by a blind man.  Being blind would be so bad. I had two images, he had none! I immediately turned away, knowing that his entry would provoke a universal stare.  But the self- assurance I had glimpsed in his entry prompted me to turn back. How could he be blind but look as though he was walking on red carpet?

 

 

Sitting there, it hit me. A 200 watt light bulb! The confidence the blind man displayed was inspirational. His physical limitations were riding with him but not directing his route. Then and there, I became aware of the power of choosing things in your life. I chose to no longer be a victim. I put on my survivor suit. Getting off the train was now my focus.

 

………………………………………………………………

 

 

Crossing

Flinders Street

, I position my frame right on the curb’s edge. Close enough that cars could slice me into neat segments - guess this would make getting on the train on my way home a lot easier! Standing near your Mum in public was once very embarrassing. Now roles are probably reversed. I put my hands on my hips to appear ‘normal’ but after a while I give up and resume my stiff abnormal stance. Green man flashes. I try to zip my frame into the oncoming traffic. Normally I’d smile. This time there are too many people – all on their individual missions. They can’t tell if I am smiling with my paralysis anyway. Smiling would waste the energy I need to cross. But other pedestrians will think I am not being nice. Oh well, my mission isn’t to please them but to simply cross the road safely. Simply!  Now that’s an understatement!  People’s feet.  Lots of feet.  A city of feet.  I hate feet.  I cross half way, to the tram island - no holiday though.  Dripping fear.  No!  Tropical sweat!  Red man now flashes. Mum turns in front of me, barricading my way saying,   “Em, we’ll have to go back”. If I could run, I would dodge her herding attempts.

 

 

I charge like a full forward, determined not to undo my hard work.  Tram tracks ahead.  My frame wheels fit perfectly – like a missing piece of puzzle.  Sighting these obstacles, makes me want to veer backwards. (If they ran the other direction, I could glide across the crossing).  Instead, I inwardly sigh and try to rev up my legs, hoping that my slight increase in speed will help me clear this glitch, spring boarding the tracks.  However, I can’t sustain my speed, so stop one millimetre before the tracks, forced to lift my leaden frame over them.

 

 

An impatient commuter ‘beeps’ his horn at me. My mum’s glare silences future honks. The car speeds off, as if to make up for lost time. I intend to wave to thank the car for not squashing me, but knowing that I’ll fall if I let go of my frame, I don’t. If it’s mandatory to ‘not overtake turning trucks,’ I should invest in a ‘high fall risk’ sign.

 

 

Mum walks too close to me, her hand hovering ready to catch me or stop any traffic ‘superman style.’ All I can hear is Mum’s thumping heart. “Boomm boomm; boomm boomm; boomm boom.” I stand there panicked, trying to appear calm, Mum my shadow. I snap at her. She makes me more nervous. She stresses me. Any excuse, anything but ‘me’. If she hadn’t caught the train or crossed the road, it would be a breeze.

 

 

Having arrived in the big city, Mum leaves me with my frame to go to her course. Stranded. My appointment is 55 minutes away, just enough time for a coffee.

 

 

It’s so embarrassing when electronic doors won’t open. It’s even more humiliating when you enter a cafe trying to make your disability less conspicuous.  You’d think the doors might choose to be stubborn or lazy when a lady enters in heels.  But no.  They decide to test me.  Wishing I’d at least brushed my hair, I reverse my frame, careful not to tip my green bag taking a joy ride on my frame’s seat.  Take two: I pick up my pace, now charging at the doors, like a bull at a red flag.  Forward. Forward. STOP!  I am forced to halt.  The door sensors don’t detect my eagerness for a coffee.  The world stares. It’s like the doors have stabbed me. Blood oozing and I’ve captured the crowd.  I’m in the centre of the bull ring and I’ve been gutted.  I reverse again. Third time lucky: longing to disappear, I encounter an attractive, impatient woman who barges in front, own mug in hand, as if she has already had her caffeine fix for the day and is back for seconds.  The doors part.

 

 

I wait my turn to be served.  Invisible, they seem to serve everyone but me.  “One skim cappuccino please…with a stir…” Before I’ve even finished my order the waiter hastily says, “That’ll be $3.30” and then “ Who’s next?”  My turtle pace forces the caffeine - deprived queue to trail outside the door. I am a stuck five cent piece in a parking metre.  I need a microphone.  “Could I have a straw with my coffee?”  Puzzled by my query she replies, “Sorry M’am, um, strawberries aren’t in season yet,” and then goes on serving “Next!”  I timidly interrupt, “No!  A straw please!”  Ever since my stroke, my ‘sleeping beautified’ facial muscles have made coffees and straws co dependent.  “Ohhhhh suuurrre!” she says, bewildered at my request.

 

 

Only 30 minutes left before my appointment.  I need a seat.  The crammed café forces me to perch on a stool next to a smelly man.  He croaks, “Mate, I’m so tired.  You’ve no idea!”  His continual ‘Mates’ are so intimate, implying that I’ve known him for years.  In terms of tiredness, I feel at this point ‘the queen of fatigue’, but I have to remind myself that it is all relative.  I feel like I have a sign on my head saying, “Talk to me and watch my needed energy go!”  I sip my coffee through a straw, slurping the last bit of fluid – I need it!

 

 

I have made it half way and had a coffee.  It is only 10:45 am.  Chuffed at my efforts, I glance at my mobile.  One new text: EMMA, APPOINTMENT CANCELLED. DR SICK. RING TO REBOOK…

 

 

My doctor is away sick!. My medical appointment is cancelled! My double vision confirms my disbelief.  What a waste!.  I still have to cross the road and catch the train home.  I can’t waste my energy getting upset.  Survivors don’t cry!  I hold my tears hostage. 

 

………………………………………………….

 

 

What had begun as a verbal battle with my folks, ended up being a physical battle.  I am meant to challenge my balance and public transport skills, but I guess it’s like asking someone to speak Swahili when they’ve never left Iceland .  Parents do know best, but sometimes even though you know you’ll fail, you need to try.  My appointment may’ve been cancelled but it had forced me to trial the train, order my own coffee and cross a busy road.

 

 

I may never run again, but confidence stirred,  I think about the pre- op me! I now don’t need my runners to escape. My new realm is enabling me to appreciate the many past runs I have been on.  I can now travel with my siamesed disability. My train trip that day was rewound on my way home from the city but I was beginning to interpret the stares and questions as lining an avenue I would walk, not as a victim, but as a survivor.