First Steps Again

by Katie Bennett-Davies

Bundled up in my winter coat and gloves, I lean on my walker, counting on it to steady me. Paul is at work and my wheelchair is tucked away in the shed. It’s just me. Walking home from the first doctor’s appointment I’ve attended on my own for over ten years. I breathe in the brisk January air. Being outside is still such a novelty, it brings a smile to my face. I laugh, thinking I must look like Andy at the end of Shawshank Redemption crawling out of the tunnel. All that longing, hoping, planning… And now, finally – freedom.

The wheels of my walker glide easily over the road. It’s freshly laid, brand new tarmac. A single small, white bag from the pharmacy sits in the basket. A whole month of medication can fit inside. 

I fight the voices, refusing to listen to their whispers. A ten minute walk and you’re excited. Pathetic. They will not ruin this for me. This seminal moment, the product of much striving. Once a daunting, unreachable goal, now a procession. My coronation.

Even the sun has come to celebrate. I hold my head high, feel its warmth radiate down on me like a round of applause for my first steps. 

 *

It’s nine years earlier . Paul is pushing my wheelchair up the street, fighting against the broken pavement.  Uneven from bad patch ups, cracked from the cold weather. Tree roots burst through the concrete. A picture of neglect and decay. I could empathise. 

It was hard enough to be outside, away from the comfort and safety of my bed. Exposed to the light that was too bright, the noise of the traffic that was too loud, and the air that was too cold. Forced into a seating position when all my muscles cried out to be relaxed. My whole body sending wave after wave of signals through my nervous system, sounding the alarm that all was not well. This went unheard by the doctors who refused to make home visits. And while I battled all this, the council couldn’t even give me smooth tarmac to be wheeled across.

The wheels are unable to match the pace of his feet, they rattle around unsteadily. There’s always a fumble so I wear a seatbelt to stop me falling out. Squeak. Squeak. Squeak. Each screech stabs my brain, each bump a blow to my weakened muscles.

‘We really need to oil that wheel again,” I snap. Cracking under the pressure of constant hits, just like the pavement. Why can’t he remember to do these little things? It’ll take less than a minute but I have to remind him over and over again. And then it’s me that gets (literally) hurt when he can’t be bothered to do it. I’d do it myself, but I can’t. And then when I lose my temper and try to fix it, he’s all doe eyed and sorry. It’s the same with the housework. Always putting off doing the washing up or not putting empty toilet rolls in the bin. He knows it’s agony for me to do it, but no matter how much I nag it doesn’t seem to sink in. We’ve argued a lot lately. 

Then the guilt swallows me. He’s doing his best. It’s not his fault the wheels squeak. The wheelchair is falling apart, with its beat-up paintwork and broken parts. It’s not fit for purpose but we can’t afford to buy a better one. I’m not the care-free, life-and-soul-of-the-party eighteen year old he fell in love with a whole two years ago. The only thing I needed from him then was to occasionally hold my hair back while one too many vodkas made a reappearance into the toilet bowl. 

Now he brushes my hair, washes my hair, lifts me in and out of the bath. Carries me up and down the stairs to our flat. Cooks every meal, cleans up, does the washing. Has a part time job at the uni to help pay the bills and makes appointments in his breaks. He’s supposed to be studying for his own degree.

When he looks exhausted in lectures, it’s not because he’s been out partying. It’s from the alarms he’s set to make sure I have painkillers every four hours on the dot. Best to avoid yet another trip to A and E. We spent enough time there the summer after our A levels. Instead of parties or beach trips to celebrate results day we waited on tests to explain this mystery illness that is ravaging my body. Taking away every bit of my independence, bit by bit.  

Paul is rushing to the doctors so I’m not in the cold for too long. Even swaddled like a baby in my thick coat, hat, scarf, gloves, blanket, I still need a hot water bottle – my closest companion.

We reach the doctor’s surgery and it’s the same outcome as any other day: the doctor increases my painkillers. There isn’t anything else she can offer. The diagnosis of Myalgic encephalomyelitis is Latin for we don’t know what the hell is wrong with you. I know Paul worries they’re missing something serious. I keep getting sicker and sicker no matter what he tries and the doctors have no answers. Nothing to explain how an eighteen year old girl wakes up one day screaming in pain and within a year is unable to dress herself.

We go next door to the pharmacy, like we always do. Our world so small. Smaller even than the one we grew up in. We were excited to leave the countryside. To go to university in the city, where we could have new experiences, make new friends, go traveling together. We wanted our lives to be big. But, our journeys to the doctor’s surgery are the only time I leave the flat. It’s been a year and a half now and I wonder if this is all I’ll ever see, this patched up road.

As Paul pauses to push open the door, I catch my reflection in the glass. A bloated face peeping out of the pile of fabrics. A face I barely recognise. Rounded with weight gain, greyed by pain, lined with exhaustion. People stare a lot, surprised to see someone in their twenties in a wheelchair.

I think about when I could walk. When people (correctly) thought Paul was my boyfriend. When we shared a box of popcorn at the cinema. And, when I used my cheeky smile to persuade him onto the dance floor. Now people ask him, is this your sister? It is incomprehensible to them that someone so young would stick with someone so sick.

Paul hands over the paper. ‘It’ll be 15 minutes,’ the lady behind the till says. ‘Want to wait or come back?’ I looked at her blonde hair, shiny and styled in an up do. Her face painted nicely with make up, not too much, not too little. I dread to think how my appearance compares. I used to wear short, tight dresses like her too, showing off my slim figure. I live in flannel pjs now, or joggers and a hoodie if I’m feeling fancy. Elastic waist bands are a must.

We decide to wait in the warmth of the shop. The pharmacist works away behind the tall counter. I can see his hands moving across the shelves. His whole body rushing back and forth. Filling the orders as quickly as he can to keep up with demand. I can’t remember how it feels to be able to move like that, so quick and light. Don’t his legs weigh him down like lead? Doesn’t each movement take a gargantuan effort? I’m stuck on slo-mo in a world of fast forward. The clock ticks on. I stare at it, wondering how many hours of my life in the past eighteen months have been spent waiting. Waiting for doctors. Waiting in hospitals. Waiting for test results. Waiting for answers. Waiting for a cure. I am suspended in time, frozen in this world of pain. Yet the rest of the world keeps moving.

Paul paces around the pharmacy, no doubt thinking of everything he needs to get done, debating which should take priority, his studies or housework. I watch him. Dark circles under his eyes, his muscles tense. He’s only twenty, I think. He’s too young. Chronic illness has ravaged my body, and now it’s choking the life out of him too. If I really loved him, I’d break up with him. I’d let him be free to live like others our age instead of constantly worried and exhausted. The other night I broke down crying, begging him to leave me because I wasn’t strong enough to break up with him. He refused. He insisted he still wants to be with me. What if he regrets that decision? What if he resents me for this? The pharmacist eventually calls my name and Paul goes forward.

‘Oh it’s you again. You’re here more than I am,’ he says with a laugh. Paul fakes a laugh and accepts the sack of medication. The big white bag plastered with Lloyd’s Pharmacy, giving away its contents. Paul places it on my lap, blocking my view.

‘You ok to hold on to that?’ he asks. We both know there’s no other option so I nod and pull my hands out from under the blanket. We set off and I hope my grip doesn’t fail me. We’re both hanging on the best we can.

*

In the nine years since that trip to the doctors. We got married, even though everyone told us we were too young. We hung a ‘Just Married’ sign on the back of my wheelchair. Paul managed to graduate. And, I finally started to get better. Paul could get a job. I managed to start walking again. Bit by bit. It’s taken years but I’ve even managed to get off painkillers. And now, for the first time in a decade I’m walking home on my own.  

  ‘Hello little birdie,’ I say as I pass the school. A little brown bird is hopping around just outside of the fence. I never took the time to learn about the different varieties of birds, or plants for that matter. I just describe them like a child.

‘There’s a big green plant, it looks like giant blades of grass,’ I’ll tell Paul later. ‘They’re planting all the time. I can’t wait for Spring.’

I didn’t appreciate nature growing up. I grew up surrounded by fields and farms. It was a ten minute walk just to reach a neighbour. I longed to be in the city, or even just a town, anywhere something was happening. I didn’t realise a lot was happening and I was missing it. I didn’t notice the flowers appear and die back. I didn’t notice the seasons changing.

Now, simply seeing daffodils begin to grow, and red berries on a plant brings me such joy. I love these plant beds by the road. A corner of nature’s beauty amongst the grey concrete. I’ve learnt to notice and love the small things.

Now I see life everywhere. New beginnings, new growth. My steps take me past the plum tree. Its branches are empty in winter but I know it will bloom again in Spring. I’m home and as I close the door behind me, I smile knowing it will open again.