Frayed

Foreward

To live with my disability is to be fragmented.

Like the turning of the leaves in the autumn or the moon shedding old time gone by, as it moves from wax to wane, this simply is.

Often we find comfort in normality and so, whilst it seems strange to say, I think that I would be lost without my muscular dystrophy (MD). After all, it is difficult to truly imagine a different normality when you are living within your own.

If I wasn’t fragmented, I do not believe that I would recognise myself.

To mimic the way MD makes me feel, I wrote this book in a fragmented way. I wrote it as the memories came to me, the accounts jumping back and forth in time. Then, after taking a step back and a breath in, I reordered the events into something more chronological.

I asked myself, why am I now able to word what for so long I could not?

In the past five years, I have progressed from strong denial of my disability to gradual acceptance. And yet, now I am in my twenties, life with my MD is even more confusing than ever before.

Up until recently, academia has been a haven for me: somewhere for my mind, the precious part of me that will not succumb to the same degradation as my body, to thrive.

When I finished my university experience, I felt I must cast out into the unknown. Everything in me was resisting the change. The tight control that I so crave in life in the face of my changing condition was comfortably sustained during my academia. At the end, I felt considerably unravelled, and was left floundering.

Difficult memories from years ago started to resurface, threatening the acceptance I have fought so hard to cultivate. I was forced to reconsider them, to look them in the eye and relive their emotions. I was adrift, and the parts of me that went before were sinking my rationality. Nevertheless, a part of me was determined to hold MD at distance from the idea of my true self: to work out its place in the idea of ‘Freya.’ There was something mercurial within me, a quiet restlessness stripping myself away to vulnerability.

So, I started to write.

When I was seven or eight, my favourite teacher said to my mother: ‘Freya is going to be a writer.’

When so much of my body fails, writing is a salvation. It is simultaneously a way to escape reality and yet to process it. To write is a harbour from the tumultuous, ever-changing sea of my normality, with all its uncertain whirls and eddies. Only through writing can I finally acknowledge the lesson that each memory has taught me, and spluttering, use it as a raft.

I have lived with this thing for thirteen years now.

This book is a collection of my experiences on the journey MD has assigned me so far. Through these recollections, these fragments, I will try my best to convey to you the reality of living with a progressive and near-invisible disability. Even as I lose physical selves that once were, I am determined to collect the adrift parts of me and assemble myself back together.

As I do so, I want to plant a seed. I want the seed to grow upwards through the fundamental cracks which exist in society. These cracks are the often misguided, and disillusioned perceptions about what it means to live with a disability. They are the lack of accessibility in our society for people with disabilities. Such cracks litter the landscape of life, making it hard to traverse. For people like me, they are easy to fall into.

You may have noticed that I say persons with a disability instead of someone who is ‘disabled.’ This subtle shift in terminology is very important. In my eyes, it highlights that a disability is simply one part of a human being: a small bit of a collective and very capable whole.

I have written this book for everyone who has a disability, in whatever manner or materialisation. We must tear up the hideously outdated stereotype of ‘the disabled person’ as only ever a wheelchair user.

This book is for those dear friends of mine with disabilities, who are taking the world by storm. This book is for those with a physical or mental, visible, or invisible or everywhere-in-between disability. Some may be like mine, and some may be different.

Each of us are on our own journey, our own solitary disease trajectories and yet, I know we are together. These people keep on going, and growing and succeeding, astounding me every day.

This book is for anyone who cares deeply about someone with a disability, and who inevitably takes on the struggle themselves, or simply for someone who is a truly wonderful human seeking to educate themself. (And for those of you who may have picked up this book by pure chance).

There is struggle within the pages of this book.

When I feel at my loneliest, my story sometimes feels like a very personal struggle. My struggle is of course niche in some senses. But I do believe that it is also universal because we all struggle.

We are all the same. We are trying to etch ourselves meaningfully into our own existence, to establish what we can about what it means to be alive whilst we are alive, even as trials and tribulations come our way.

To struggle is to be human. Struggle is an innate part of our human existence. Without struggle, or anxiety, or fear, we would not be kept safe. We would simply not be equipped in the face of threats. The rush of adrenaline, the shaking and quivering that I become when I attempt to cross a road is a horrid experience, yet I know that it is the innate processes within me keeping me safe. In a way, we owe struggle our gratitude.

Struggle is all around us in nature, too - in the very pursuit of survival.

So, what distinguishes us? Perhaps it is that to be human is to go a little further: to struggle and to recognise it as such. Only in recognition of struggle can we overcome it. Only in acknowledging it will you recognise when you can start to help yourself, to learn that not all struggles are necessary.

My body, and my mind, have struggled immensely in so many ways from childhood to adulthood. The struggle has its roots in in the parts of my disease which were and are out of my control, and because of parts which I could alleviate, if only I had been brave enough at the time or had known how.

This book has themes of sadness and pain, yet acceptance and gratitude too. I will speak of the wonder of love, and its inherent challenges: of trying to love when you yourself may not feel that you are whole. There is also humour within these pages: believe it or not, navigating life with a disability can be very funny.

This is an account of suffering, and yet I also believe of hope. There is always hope to be felt. Leaves may fall, but new leaves will grow again. The moon quietly continues its cycles.

It is my hope that something, somewhere in my words will resonate with you, the reader.

In writing this, I am putting to paper the way I have overcome my challenges, just as you too overcome challenges every day, whatever they may be and however they may emerge in your life.

I hope that my words will appeal to that part of you that always says keep moving forward.

| Chapter One Uprooted

When I try to contemplate what is happening to me, I think in terms of needles and threads, seams, and sinews. The unseen fibres of my muscles, the minutiae of me, are not sewn together correctly. They miss the vital binding, the in-between.

Whilst MD has left me feeling fragmented, this almost seems too jagged, too immediate a way to describe what is happening to me. Instead, I feel as if I am caught in a gradual unravelling, a dissolution inevitable. Slowly fraying threads.

I have struggled with understanding where I am going. I know that my muscles are wasting away. Into what? Oblivion? Are the fibres lonely where they go to? How can they be and then cease to be? I suppose it is like death, and yet here I am.

I struggle to process what I am now, with the what-I’m-not-anymore a vast confused expanse, a no-man’s land of contemplation.

*

We all have ghosts, floating around the place.

Sometimes, I feel like I am a living ghost. The physical bits of me which are yet to fade in the ceaseless march of time know that they are going to. Already they are becoming transparent, invisible to the eye but felt within me. I try to clutch at the me that was before, but all I feel are remnants in my fingers.

We all have past selves. We all change in time, and leave behind the people we once were, our identities shaping and morphing to our surroundings and the inevitable new people who we will come across in life. Our past selves might be mental or physical, or both.

My past selves are strongly rooted in physicality. I cry for the little girl who could run and jump. The sporty-to-be one. She would take after her father: he was an athlete during his RAF days. He completed the Great North Run.

Recently, I found an old primary school report from 2005.

‘Freya thoroughly enjoys PE. It is an area she really thrives in.’ I read the words as if from afar.

I watched an old videotape as if from afar, too. In the footage, seven-year-old me crouches down to peer at some growing berries.

You can see my bright curious head and fresh limbs bending and stretching as I conclude my observation and rise back to standing.

I try to process that I once was her. It is hard to. It is almost as if I am observing someone that wasn’t me, tumbling out of myself to view something far gone, lost in the throes of the deep past. When you can no longer physically do something you once took for granted, it is perhaps among the melancholiest of feelings.

I would like to give this small me a hug and tell her to relish the moment as she crouched to study those cloudberries. But how could a child understand?

To be a child is to live with abandon, to not think or plan too much. To know struggle or woe as simply in the moment: when they fall and graze a knee, then get back up again, the struggle forgotten. An adult will worry about and dwell on the future and the past.

So how could this younger me possibly understand to relish the moment? To her, it was just one moment with another exciting one coming next. I envy her.

If she would pause for one second from her exploration and listen to me, I might say crouch, run and jump as much as you can, because every so often in years to come you will notice something that you cannot do anymore. Little does the carefree child know that she will then live in continual stretch of grief as another part of her becomes the past long before it should.

It dissolves softly, a quiet erosion, hard to notice, only gradually becoming known in time.

*

In Vestfold og Telemark, Norway, the mountain Gaustatoppen stands.

It is a land of majesty, the roots of the mountains established long before we scratched their surface and carved out our crude pathways.

From the top of the mountain, the eye beholds something astounding: a green and brown landscape pockmarked by deep lakes. As the mountains remain stolid, immutable, enduring, the sky above them is an ever-shifting mass of different lights.

The surfaces of the lakes stir with colour, mirroring the sky’s drama as its changeable story passes overhead. For the beholder, it is a performance which elates the spirit. The colours of the sky in the lakes become reflected in the eye.

When I climbed Gausta, I was nearly eight years old. I remember the colours so vividly. I recall the sense of my own awe. At that age, everything in the world looks big, let alone the world from the top of a mountain.

I remember that no one expected me to climb it. My brother Luke, nearly five years older, went ahead with my father and lovely uncle, and I followed far behind with my mother.

Gausta is a climb of 1883 m, its walk considered ‘family friendly.’ My parents knew that the experience would be an incredible opportunity for their fit and healthy child. Knowing what I know now, I am eternally grateful for having had the chance to walk where I can no longer.

I recall struggling, pausing, getting frustrated and grumpy at my mother, and requiring many snacks! As this was a couple of years before my diagnosis, I am unsure as to whether it was my MD causing the struggle, or just my seven-and-a-half-year-old stamina. Regardless, I wouldn’t let the mountain defeat me. Up, and up mum and I went. Little rocks cascaded down as I lost my footing, tripped, picked myself back up, held onto mum’s hand. It was summer but there was still a chill. The air was so pure, so untainted.

I reached the top, and was met with the sight of everyone’s shocked faces: dad’s, Uncle Theron’s, Luke’s. How had something so small conquered something so big?

At the summit, there was a café where I was rewarded with delicious waffles with melted gooey chocolate. I think that was the first time I had ever had waffles.

Earlier in the holiday, I had been bought this gorgeous rabbit toy. It was the softest little black and white toy, and I loved it dearly. Sadly, I cannot remember what I named her. The funny thing is that Luke, to try and persuade me to climb Gausta, had said that there might be another rabbit toy at the top of the mountain.

Little me wanted to give her toy a friend. She would do anything to do achieve that, including climbing a mountain! In the end, much to my disappointment, there wasn’t any toy at the top (thank you for that Luke). I remember being distinctly sad eating my waffle, even as dad ruffled my hair and said how amazed he was to see me.

Tiny me had a tiny SAS-like core of determination. Without knowing it, I was laying the foundations of how I would cope with later life. Even today, I still strive to find that rabbit, the reward at the end of every challenge.

Sometimes there isn’t any reward, but I have taught myself how to get to the top regardless.

*

Her introduction to a world that she was too young to understand came in a frantic whirlwind of nurses running around and pallid white light. The doctor wanted her in now, now. They were behind schedule.

Her introduction to a future she couldn’t yet comprehend came with a rude pain. The nurses were kind, yet stressed, the strands of hair sticking out from under their caps a little frazzled. As the canula entered her small hand, it was rushed and careless, the numbing cream not yet numbing. The nurses didn’t mean to hurt her, but the doctor was shouting at them. Black spots clouded her eyes, and white-heat seared up and down her body. She was given a wheelchair to briefly faint in, and gratefully flopped into it, retching into a bowl.

After she had regained consciousness, she was administered a deep heavy liquid which flowed into the canula and made her heavy too. It permeated the blood in her small limbs and was something she could not fight. It wasn’t that there wasn’t any fight in her. To fight would be at the core of her character in later years. She said goodbye to her mother and then they took her away into still more pallid white light. She wasn’t aware of anything after that, of course.

In that hospital room, metal sliced the child’s skin. It must have been so very cold. There, they took a small ten and a half-year-old part of her away. She slept somewhere suspended in the darkness, unable to cry or reach out to take that part of her back. It was a tiny red pulp of muscle, which she would never see again. Where it was taken would be marked with a little white scar: a tarnishing of a young body, which would bring consequences incomprehensible to a child.

Just like her, the little pulp was thrust into the pallid stark white light. It was torn from its place in the natural order of things and into the petri dish. You might argue that it was such a small bit of her that it did not matter, that it would not be missed. That is true for that time. The part of muscle removed was not so significant. It was the reality which would emerge from its removal that was significant.

She woke later, eyelids stifled under the anaesthetic’s caress.

That night, she didn’t want to sleep alone in the hospital. The nurses let her go with her mother to her grandparents, to that quiet part of the New Forest where the birds sing. A place she loved; a place where she would run, trip, and pick herself up again. In years to come, she would return to the garden, which sang of the lost physicality of her childhood. A little ghost still inhabits it today, grazing her knees.