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A mile in my shoes.

1988

She ambles along corridors filled with vicious hormonal hyenas. Keeping her head down, she tries to disappear into the background. However, this girl, this little lamb, stands out because of her gambolling, bouncy gait.

‘Ay, girl, where’d ya get yer walk? Can I buy one too,’ a hyena snaffles after her.

The little lamb ignores the taunts, she knows the hyenas can do much worse than laugh at her, and they have. But today it doesn’t matter, she is in pain; her right hip joint feels like it’s being speared by a red-hot knitting needle. Compensating for the pain, she adapts her walk; it looks like she’s wearing one flat shoe and one four-inch stiletto.

‘Look! Here comes Michael Jackson! Everybody Moonwalk!’

Shouts echo around school corridors. Predators jostle for position in the hunt, barging into the lamb’s back. Laughing, they try to imitate her awkward steps.

Such a strange little lamb. She loves learning. The hyenas chatter and snigger at her for wanting to learn, and for her interest in palaeontology. The little lamb tries hiding behind her dinosaur outfit.

‘Open the door, get on the floor, everybody walk the dinosaur.’

Pleased with their new skit, the hyenas push and trip the clumsy creature up. The little lamb-dinosaur shakes off the words and wallops, and plods on dejectedly.

****

Every day throughout secondary school resembled the story above, although some days were worse than others. I dreaded walking through the gates in the morning.

At fourteen, I had fortnightly appointments at the hospital while the doctors tried to work out what was wrong. This lasted six months; the doctors diagnosing the pain in my hips as puberty growing pains – my pelvis was splitting too fast in preparation for good, old-fashioned childbearing hips. If only that had been the case.

****

1992

I was experiencing pain in my knees and hips.

After a nasty fall, I visited my doctor. She referred me to a specialist. Hospital visits dominated my life again.

I was diagnosed with hyperextension of the patella – my kneecaps moved too much. Then the diagnosis became Chondromalacia Patellae – my kneecaps were small, underdeveloped, and the bone was still soft. The specialist referred me to a physiotherapist: she turned out to be a sadomasochist, insisting on practising her fledgling and often flailing acupuncture skills on me.

1995

I was studying BTEC Advanced Sciences at college. Getting to class was a physical trial: most were on the third or fourth floor of the building and walking up stairs had become difficult. When I wasn’t studying I worked part-time in betting offices around Liverpool and Lancashire. I spent most of the day sitting at the till registering bets. Refreshing the dwindling piles of betting slips was problematic; they were kept on the bottom shelf below the tills. The old boys who spent all day in the shop were always concerned about me.

‘You all right, pet?’

‘Yeah, just got weak knees,’ I’d say, smiling my thanks.

One damp, bright, summer morning, I stood at the bus stop waiting for the Number 89. The single-decker pulled up; I put my foot on the stair to board, but as I stepped up my knee gave out. I crashed down like a bag of spuds. I tried to stand, but my legs wouldn’t work. I looked at the bus driver, pleading. He glared at me like I was a piece of dog crap he couldn’t shake from his shoe. Struggling, I pulled myself up using the handrails, showed my pass, limped to a seat, and fought back the tears. My tights were laddered. The huge dirty graze on my knee and shin bled mercilessly. This meant another doctor’s appointment.

It was a sunny day: hot, angry, and sticky. The air-conditioning in the surgery took a little of the sting from the heat. After explaining what had happened she questioned me about the physiotherapist and specialist visits. Incredulity distorted her face as she listened to me.

‘Your problems are psychosomatic. You’re just like your Aunty! Get out! I don’t treat hypochondriacs!’

I left the doctor’s office fuming. The Aunty she spoke of also had a real complaint. Cancer.

December 1998 (Home from university, Christmas holidays)

Suffering with a sore throat, I made an appointment to see the doctor.

My original doctor had retired. This was my first meeting with the new doctor. He was kind. Attentive. When the appointment was over I stood up to leave. Placing my hands on my knees for support, I walked my hands up my thighs until my abdominal muscles allowed me to stand straight.

‘Why do you get up like that,’ he asked.

‘It’s the only way I can,’ I said.

‘Stand without putting your hands on your legs.’

I tried. And tried again. Impossible.

‘I’m going to refer you to a neurologist,’ the doctor said.

Finally! Someone had taken notice.

June 1998

I sat in the green plastic chair in a dreary waiting room that smelled of antiseptic and stewed tea. My name was called, and I walked into the office of a handsome, unassuming neurologist. He listened intently as I explained my problems. When he spoke he had such a sexy voice! He thoughtfully examined my muscles, sent me for an armful of blood tests, and referred me for nerve conduction tests.

November 1998

The tests were clear, except for the DNA test, which was inconclusive. A muscle biopsy was required.

December 1998 (after Christmas)

I arrived at the hospital around 8 am. Ushered from the plush purple waiting room into the ward, I sat on the NHS bed, the garishly-coloured decency curtain pulled around me as I changed into the open-backed robe.

Six hours later, after the removal of the reluctant rubber band from my left bicep, I was two cubed centimetres lighter in muscle, five stitches on my way to becoming Frankenstein’s monster, and on the National Express coach to Bradford with a bag full of fresh dressings. The first change of dressing had my (now ex) boyfriend running for the toilet to throw up! Ten days later I was almost fully healed and back to the hospital to have the stitches removed.

24th May 1999

I received the biopsy result the day before my second year genetics exam.

Limb Girdle Muscular Dystrophy.

Paralysed, I nodded my understanding as the neurologist spoke about the progressive muscle wasting disease I had studied months earlier in a room with 130 other students. This time the lesson was personal.

‘Genetic disease… Autosomal recessive… Both parents need to pass on the gene… One in four chance.’

His voice was so calming, he could have told me the world was ending and I wouldn’t have been scared. But then the questions started reeling. What do I do now? How do I tell my parents? Crap! Dad was in the waiting room. I hadn’t cried, but guilt spilled from my tear ducts as I told him the diagnosis.

****

I called a friend on my way home from the hospital. He met me at my front door.

‘You know what you need to do now,’ he said over a cup of tea. ‘You need to buy a house on top of a hill and a skateboard. Going to work would be fun. Getting home?’ He smiled, and raised an eyebrow. ‘Bit of a bummer!’

****

May 2009

Every day is a hills and skateboard day now.

My daughter was born in September 2004. Her birth, although not difficult, was traumatic to my weakening muscles. I had to learn to walk again; it took two days after [Princi]’s birth before I risked taking a few unsteady steps.  I have never recovered my pre-birth balance. Instead, I use a wheelchair when I go out as I often fall. My family is always there to help, even [Princi], although she gets frustrated when she can’t help me up. Thankfully [Princi] is only a carrier and not a casualty of Muscular Dystrophy.

In 2006 my specialist informed me of possible associated cardio-respiratory problems. Just what I needed, my heart and lungs affected too! An annual sleep study keeps tabs on that problem, ensuring that I breathe enough during the night.

The Muscular Dystrophy keeps things interesting, if not a little worrying. But c’est la vie. I suppose I’ll have to get an onboard motor for that skateboard!

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Comments»

1. Metajugglamum - February 25, 2010

I just laughed … and cried at the intensity of detachment in your writing. Such a wonderful piece – I can only shake my head in awe at your pragmatism and your ability to bite on the bitterness which could have predominated here, but doesn’t.

I am very glad to have found you on Twitter – you have, probably totally unknowingly, given me an enormous amount of strength through your own HUGE strength of character and through your avid determination to move ahead, get things done and make the best of your lot.

Thank you for sharing this and I wish you all the best in the world for you and your daughter.

MJM xx

phoenixaeon - February 25, 2010

Thank you! And you have helped me, too, by listening to the odd late night ramble and sharing little snippets of your day on Twitter. So it’s definitely a mutual gladness of Twitter serendipity 🙂

I hope you and your little’un are doing well tonight. x


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