Letters of Love

I realise that I haven’t blogged for ages. My health continues to be my main priority but there is a story that needs telling. Fragments of it seep into my dreams, and in the hours when I cannot sleep, I find myself pondering on it. The problem is that it’s not really my story to tell, it’s Diana’s. That is not her real name, but I want her to retain her anonymity and, most importantly, I want her to retain the rights to her very own story, should she wish to to tell it in the future. So she will be Diana, Roman goddess of the hunt, lover of woodlands, wild animals and all things mystical.

This is the story that ran parallel to my declining health and surgery last year. It was, and is, every bit as powerful, every bit as buoyant, but has up until this point remained underground (so has my surgery story actually but I’m leaving that for another blog.) The need to bring it overground spiralled out of one comment made by a counsellor on a television show about teenagers struggling to belong in this world. What he said was that teenagers are a red flag for society and that particularly resonated with me.

What did he mean beyond the obvious? Where could I take his comment to? Teenagers haven’t developed the sophisticated defence mechanisms that adults have in order to deal with everyday living. The world can be a very scary place. Information technology has speeded things up to almost breakneck speed but the human spirit has remained the same for generations. There’s a disconnect there that can make things astonishingly hard to absorb. I think it’s impossible to speed up the process of understanding and processing emotions. It takes time. It takes life experience. I, as an adult often feel incredibly lost and ungrounded, but at least I now have a fundamental sense of who I am. I have a home base to return to. Without that home base, life is simply unbearable.

I’m telling my side of Diana’s story because I feel it needs telling. What kind of life can you freely live when the ground beneath your feet is constantly shifting? When both you and the world are changing beyond your comprehension? Diana wasn’t even sure if she belonged in this world. She couldn’t find her place. That in itself made me incredibly sad. We’re failing the next generation if even a small number of them are questioning whether they even belong here. That should be their birthright.

I began the whole process by asking for permission to write letters to her. It was important to me, right from the outset to be willing to do things on her terms. Diana was old school. She didn’t do email. She loved history, especially the 1950’s and she had a romantic notion of letter writing with letters merrily crossing the ocean to be opened with a fancy letter-opener and read in the privacy of the bedroom, or bathroom. And so began a series of love letters from one female to another. They weren’t letters from a lover to a lover but they were love letters none the less because every word within them was written out of love. I’m a writer, I love to write. It turns out that Diana, a fellow creative, was every bit a writer too.

I went into those letter-writing months with an open mind. I don’t subscribe to the theory that just because I’ve lived longer on this planet I have much of the wisdom and all of the answers. No. I had as much to learn as she did. There were so many things I needed to tell her but I didn’t want to begin with them until I’d read and ‘listened to’ all that she needed to say, both the things she wrote and the things she didn’t have the courage to, and add to that the spaces between the words, the pauses, the silences that often times spoke more strongly than the words themselves. Never underestimate the power of listening either to words written or spoken. It breeds respect and tolerance and who doesn’t have more fun in the company of those who are prepared to listen and respond in kind?

goddess-diana-1650622_960_720I have to say I read Diana’s words, three, four times over before I was prepared to reply. I didn’t want to be arrogant. I didn’t want to write too much, too soon. I didn’t want to use big words, sweeping phrases and I especially didn’t want to minimise her pain. The words I wrote to her were more humorous than I initially imagined they would be. I think that’s a reminder that humour and hope are everywhere, even in the darkest places. I found myself referring to myth and fairytales on a regular basis and I discovered that she was a big fairytale lover too. I relished what we had, the relationship we were building together. It was a living, breathing, messy thing and it was ours, and the messiness seemed to make it all the more beautiful.

There were so many things I wanted for Diana. I wanted to keep her here on this earth, in love, until she found the courage to even begin to like herself. And I knew that I wanted to send small trinkets or talismans inside of the letters because sometimes holding onto something tangible is as good as standing with two feet on solid ground. It’s belonging. And more than that, if I’m giving you something precious and saying, please hold this for me, I’m trusting in you to keep it safe. I’m believing in you and that belief can set you free.

Here’s just a few of the things we discovered together:

Never for one moment listen to those people who label you as too sensitive or highly strung. What do they know? Being able to feel is a gift. Some of the greatest thinkers and creators in our world are sensitive souls. Yes it might mean your life isn’t easy but it will be rich and well-lived.

Never be afraid to ask questions.

Asking for help is hard. Asking for help from the right person/people is even harder. For if you ask for help and get nowhere it reaffirms your belief that there is no one willing to help you.

Find your own beauty. Be a beauty ambassador just be being yourself. I think this one particularly resonated with both of us. Illness and surgery have reshaped my body and caused me to question the collective concept of beauty. Diana was busy figuring out what aspects of herself she saw as beautiful.

Along the way I learned an awful lot about myself and many things about Diana. I learned that as confused and adrift as she was, she was also smart, angry, articulate, funny, exasperating and passionate. I learned that she lived and breathed life in her bones although she fought to quell it, to attack it because she wasn’t even sure she wanted it. Life is enriched by love, and if she wasn’t ready for the life part, I wanted her to see that she had the love letters, both the ones she wrote and sent away and the ones she received. She had something. And sometimes even a little something is good enough.

Diana taught me so much about myself, my own life journey, my steadfastness. What she gave me was remarkable for whilst the health part of my life was falling apart, there we were busy constructing a world of words that was rich, warm and powerful. It helped to balance the scales. Plus all the letter writing took me back in time to the dark ages, before email was ever invented, back to my time spent at boarding school. The post was a highlight of the school day and guaranteed to arrive by 11.30am which was right in the middle of an academic class for me. Each day during class one of us would ask to be excused to use the toilet and come back via the hall front table where the letters were sorted by form and then alphabetically. We were lucky, those having a dance class during that time weren’t afforded the same freedom and had to wait until lunch break to receive their mail. Slipping a letter into your bag to read after class felt like an exhilaratingly decadent thing. The words in those letters spoke of a world outside the four walls of boarding school, a world where not everybody lived and breathed dance. Can you imagine?! It was us and them and the words were the connecting factor. That memory has reignited in me the need to write, at least when I am well enough to. It has reaffirmed the power of words not only to shape a life, but to hold it, in safety, in security and in love.

Today Diana is doing just about OK. She’s taken up hip-hop. She’s keen on cooking. She’s found herself a boyfriend and she’s started to live again like she might really belong here. There is a place for her, as there is for everyone, if only she can find it. I’ve yet to send her the fairytale of The Ugly Duckling which I promised to do, and I will. I continue to write to her, but less frequently. Our days of writing intensely are over for the moment and her energy has been redirected back into living her life. That is how it should be. I’m incredibly proud of her spirit, her tenacity and I can never think of her without smiling. She is Diana, warily hunting down the life she deserves and that takes tremendous courage.


There Are Limited Words

I’ve been struggling with writing recently. In part because I am so very tired, but also because I don’t have the vocabulary to express exactly how I feel. I am in a non-verbal space, struggling to cross over into language. If I were still able to dance, that is the medium I would choose right now, because it would allow me to be exactly as I am, a tad jumbled, disconnected and yet cohesive in a brand new way I cannot quite fathom. Yes, dancing would most definitely be my go to. It always was but it can no longer be.

The body always finds a way to express what language cannot touch often in an excruciatingly beautiful way. There’s a place where pain and beauty meet and it’s actually more comforting, more fulfilling than you could possibly imagine.

Surgery and big health battles mark you. There are physical scars that you confront every day. Little mirror reminders that on a good day you can play about with…..Why look! It’s a battle scar, it’s what you have to remind you of the time you soared with the eagles looking down upon this island. Remember how good that was? It’s the mark of your clan, your sisters and brothers have it too, it’s a mark of inclusion don’t you know!

And yes, some days, it’s just a plain old ugly scar…. But who’s to say you can’t live happily enough with ugly?

If I am honest I am struggling to live, as I was in this world. The person that I was in the hours before surgery, I am no more. I am most definitely finding new ways to be and I am in the early-learning stage of experiencing them and putting them to the test.

I am pre-language. Yes, that is where I am. I am also learning who I am from the things I am not and the things I can no longer be or do. It’s a good-enough way of working out who you are. I’ve used it in the past. By eliminating possibilities you open yourself up to new challenges, new ways of being.

But there is expectation. Always there is expectation from others that you will just slot nicely back into the life you had and the person you were before the surgery. That can’t happen because it doesn’t allow for me to be congruent. It doesn’t allow for me to breathe.

I cannot rid myself of a very strong image of walking through a graveyard and wondering whether I might find myself there soon enough. What words would I want on my headstone and how would they reflect the life I’d lived to date? How would I fit in there and how would that space become mine forever?

I can hold that memory with a very small degree of fondness now but it’s taken a while to get to that place.

I still live….

I think it’s important to acknowledge that.

I am still overground.

But I cannot wear the same clothes I used to wear because they feel differently against my skin, because the weight is wrong, the patterns are headache-inducing bold. I need texture. I need darker colours that pull me closer to nature. I need colours that feed me, nothing too floral. I crave simplicity and freedom.

I cannot currently read anything but books from my childhood. I crave a certain degree of simplicity in literature and plot so that I can build myself up sinew by sinew.

I need to sing the same song over and over until it becomes part of who I am. And so that is what I do. Those song words are building blocks and the vibrations hit me where I need it most, in the muscles of my heart.

When I walk outside, the ground feels different beneath my feet. I want to own it because it is my earth as much as it is yours, but it feels softer and yet strangely more resilient. And the sky feels taller and less infinite. Perhaps I am a little like Alice when she fell down the rabbit hole. I didn’t ask to fall, but when do any of us ask to topple down something so dark and unfamiliar?

In the absence of words I often close my eyes and hum. And then I feel. And through feeling and humming I see colour, small faraway pin-dot shots and then huge waves of colour that come right to my fingertips. And I let the colour wash over me and for a while it makes me smile.

And how do I cope with the people relating to me in the way that they always have done? Because it is proving quite problematic.

I want to say to them that yes, I may look the same but I am so very changed that I cannot yet find words to demonstrate that change, and if you hold on for a while, if you’re a little bit patient, then I will find them. But what I can do right now is talk about colour and texture and proximity to what is really real to me in that moment in time, and what really matters.

I haven’t done any of that kind of talking yet…..

Always I am asked how I am doing. I am constantly asked to explain the surgery and the procedures I went through and what my doctors think of my progress. I can no longer do this. I cannot wade through tarnished ground. I cannot speak of myself as a ghost, for who I was then is a shadow self of who I am now. I ask you to respect that, to relate to the person you see before you right now.

I am enough.

It’s a privilege to grow old. Many folk do not make it. I am considerably less scared now at the prospect of ageing. Think how much a soul accumulates during a lifetime! It’s a beautiful thing. The slow disintegration of the body; the aches, the pains, well thanks to ME I already have those. I just want this body of mine to last out as long as it can.

Transition is never easy. It’s an upside down dark space. It’s a well of nothingness with no new horizons in sight.

When I am less physically exhausted, I will return to the words. I hope they will still be there for me, albeit shaped and served up slightly differently. Transition is possible, however painful it is, however broken-down you become, you can build and rebuild from the smallest, the shakiest of materials and that still gives you a good enough chance of succeeding, of living as you need to live. You just require one thing to hold onto. One thing that will pull you through.

I actually have two things right now, so I consider myself blessed. I have music and colour, or colourful music, however you choose to look at it. I’m holding onto both of them super tight.

I haven’t spoken directly of the fear that pervades everything, every test, every surgical procedure and that weaves its way throughout this blog, because I think you can sense it, you can probably feel it. I hope it doesn’t curtail you in any way. I often ride on the edge of that fear, so it doesn’t take me down. Acknowledging it somehow lessens its overall power. Fear is fear and I am myself.

I have a real need to celebrate. I considered having a second birthday this year. Why the hell not? But it’s not quite the degree of celebration I want. I’m still working on it. I want a celebration that fits the circumstance. I want a celebration that honours the struggle in a slightly irreverent manner.

When I’ve figured that one out, I’ll get back to you.

Fighting The Voices

This blog post has been a constant stream of dialogue in my head for a few weeks now. And I dedicate this post to someone who means the world to me who is undergoing her own struggles with what it means to be alive, to be beautiful.

It begins with a scar. The huge scar that came out of surgery. There’s no hiding from it. It’s unbelievably prominent but in the shape of a somewhat loveable half moon and to me that makes it bittersweet.

As I look in the mirror those first few days after surgery, all I am initially able to see is ugliness and it sets off an outside voice….

Who prescribes beauty?

The voice is insistent. It demands that I consider the question thoroughly.

Is it society? There is an acceptable norm, for sure, but where did that derive from? Who the devil first set it up?

The voice changes shape a little. It becomes sweeter, more understanding.

Who is dictating your scar is ugly?

I write about this in the present tense because the struggle is still in me. The voice is present in my present…

I think I have an answer. There is another slow, small voice and that voice is mine. It comes from deep within, whispering, insistent. And in those first difficult days following surgery, if I lean in as far as I am able, I just about catch hold of it. It makes me shake a little and I start to cry….

That scar is a curve. You said so yourself. Were you not the one to label it a half moon?

I smile at this and the voice continues….

A curve is dance. Dancers make lines and curves with their bodies in the air. That scar could be beauty.

Could it?….

Yes, it so could. Because you define it. You acknowledge the shape, bless it and turn it into some kind of music. You let it sing. And you know that if it sings, you live.

My inside voice comes and goes. I encourage it to stay only to beg it to leave again. I both need it and I despise it. Luckily for me, it sticks around. It becomes stronger. But still there are some days I don’t want it and some days I crave it. There are some days I play hide and seek with it and some days it completely escapes me. Looking into the mirror as an ex-dancer, that mirror is both my friend and my enemy.

It was through looking in the mirror that I first learned how to acknowledge my body, how to manipulate individual muscles to make shapes on the ground and in the air. The mirror helped me to dance. It helped me to live.

Some days if I close my eyes I can see my surgeon. There he is in the operating theatre making an intricate dance with his hands and a knife in order to fix what is broken inside me.

So there is dance. Always there is dance. And there is movement. And with movement comes life.

In tough times, you are stronger than you could ever believe. The human heart and soul are capable of incredible things. Whoever, whatever it is that comes to touch you, to slip alongside you in your darkest moments, is precious born. If your faith is strong, you would call it Faith or God. If you are a believer in guardian angels then it is your angel lifting you up from behind. Perhaps you are precariously held together by the rising of the sun each new day. It isn’t really about who or what it is, it’s just the fact that it’s there and freely available to you when you call out in need.

But back to beauty. It will be a struggle for me to accept myself as I am now. But its something I will continue to work on, firstly for myself and the relationship I want to continue to have with my partner, and also for the person to whom I dedicate this blog post. This is a society rife with cut-throat ideas on what is an acceptable body-shape. What is the face, the image you should carve out when you step outside your door and face the world? If that’s a tough world for an adult to live in, it’s an impossible one for a child.

Kids are like sponges. Many of them are incredibly sensitive. And they’re smart too. They hear not only what you say, but what you’re afraid to say. They hear the real truth whether you like it or not. And it’s not just the girls, it’s the boys too. You may say you’re perfectly content with the way you look, thank you very much, but you hardly ever eat pudding and you always quietly count calories when you think no one’s looking. Or perhaps you come at the mirror wearing a coat of armour, wielding a sword and a fake smile because you feel so meaningless that day and you can’t take the hurt. I’ve done that many a time.

Kids see all of it and they lap up any incongruence. So as an adult and an aunt, I feel I have a responsibility. My first struggle is with myself. And it is for myself that I will mourn the body I had and slowly learn to love the body I have now. Is it so very different? Some may say not. But I feel the difference and even if it’s incremental, I need that necessary adjustment time.

And it is truly about love. If I can get myself there. Can I look in the mirror and face with ultimate kindness who I was, who I feel I am right now and who I am still becoming? Can I be gentle on myself in the process? There is sadness mingled with joy. It’s like looking for a rainbow after a storm. For sure it’s out there somewhere, if you can but find it. I don’t for one minute assume that any of this is easy, because it’s not. But there’s beauty, there’s red-raw honesty in all of it. There’s truth. There’s movement. And there’s life. It’s not in any way shaped by impossibly rigid societal norms dictating what is, and what should be the culturally acceptable body shape.

That is what I want to pass on to the next generation. That is what I, as a woman want to offer as an alternative to those sensitive souls caught up in trying to carve their bodies into a shape dictated to them by a force they don’t truly comprehend, some kind of elusive god or goddess who promises much on a glitter-filled plate but delivers so little. And it doesn’t matter that they see my struggle. For the struggle is real, it’s truth and ultimately, they understand that. It aligns with what they know, the experiences they’ve had when they’ve felt even for a single second that they truly belong on this earth and that this earth is actually their home.

It is their home. They deserve to belong here. We all do.

And I want to say….look, just look this way for a minute. Scrap that cultural, societal, media rubbish that dictates you should carve up your body a certain way. Scrap the body judgement of yourself and those around you. Scrap the diet for diet’s sake. Close your eyes to the barrage of airbrushed images you face every day. There is an alternative. For sure it’s not an easy one because it demands that you face your demons head on, but it’s actually worth it.

And to someone in particular I want to say, if I show you what I know, what I’ve learned and you show me all that you know, then together we’ll make something that’s beautiful because it’s real. And yes it’s true, being real, being honest can hurt like Hell, but you can breathe that way. Breathe like you truly belong on this earth. Plus you get to be yourself. And there’s nothing quite like that, I promise. You are a smart, beautiful and amazing human being and until you can see any, or all that for yourself, I am proud to continue to see it for you.

Winter Leaps

As I approach surgery later this week and Storm Imogen blows cobwebs from my mind and a rubbish bin and some plastic wrapping down the street, I am reminded that I love Winter. I enjoy darker, leaner times perhaps more than most. Take Vivaldi’s Four Seasons. I’ve always preferred Winter and that’s not only because I’ve danced a piece to this music and whilst it plays I always run through the steps in my head. No. It’s because I find it one of the most profoundly beautifully complex pieces of music I’ve ever heard. It breaks me into pieces every time and I must fix myself back up together again.

That’s both a curse and a challenge. It makes me feel incredibly raw. And alive. I think that’s my point. There’s a lot of tough living in the darkness and that living is beautiful. That’s what I’m telling myself right now. That somewhere inside of major surgery that by its very definition is brutal, there is still love and light. And if I can just catch hold of either one of them, then I have a way through. I just need to make the initial leap.

I’ve learned recently that a lot of my favourite classical music resonates at 432 hertz. This is very interesting to me. It makes me think that maybe it’s a universal pulse? It’s definitely my personal pulse.

Music has been part of my life since my first foray into a dance studio. It’s my backbone. So in order to get through this particularly challenging time, I turn to it to feed me. I need it be a language of hope, a promise that there will be life the other side of surgery, and that if that life is initially difficult or incongruent, it will still be right there by my side just as it always has been.

All over the media are pictures of upturned trampolines. Some upturned in their own garden, some more flighty ones, (those that had more front) precociously performed some kind of magnificent pirouette or fouette to land in the gardens of distant neighbours and by the sides of roads. I have some degree of small admiration for them. Hopefully when Imogen has passed through, that messiness can be righted and I hope that when this week is done, my little world can be righted too.

But that courage to leap both inside and outside of what you know in any way that you can, that comes first….

Digging for Treasure

Perhaps the title is a little inept. It shows only a fraction of what I wish to convey. Living with one chronic illness, you don’t suddenly want to be told that you have yet another, potentially very serious thing wrong with you. Yet that’s what I’ve been facing these last few months. But this post is not about the condition itself, it’s about courage, about living as the best self you can be whilst you deal with and interpret on a daily basis, all the crap that’s flying about.

To begin with it’s like wading through quicksand. And the quicksand comes out of nowhere. Just a second ago there was a footpath, a little overgrown in parts perhaps, but all it required was a gentle hacking. (An oxymoron?) Perhaps. But there was something some way fast beneath your feet.

With it gone, how to prevent the descent?

I flailed. I cursed fear into a corner. And then, one day, all of a sudden I stopped my cursing. Why? Some small voice inside pleaded with me to try another way. So I did that beckoning thing, with my index finger, opened my eyes as wide as I could manage and I invited fear in, told it to sit down and take a seat in the corner, thank you very much.

Then I tried out a discussion. In the first instance it was like conversing in a foreign language. It was brittle, static talk. It gave me a thumping headache. It took a long, long while for the brittle to became just a wee bit sticky, for there to be some kind of small, sweet give to it that I recognised as possible progress.

I turned to music, the language of any dancer. I played music I loved and music I learned to love until everything was ground down to just above disintegration. There, right there, was sound and motion. Motion was good. Motion was hope in a bottle. And music became both my past, as a dancer, and my future, when I wasn’t sure I still had one.

I researched binaural beats, the premise of which, as a dancer, I intrinsically understood. I played isochronic sounds to fix the unfixable.

Then came the jewels. First yellow citrine, then blue kyanite and jade kindly bought for me by my partner. I wore them as bracelets on my wrists, offerings to the god of health.

I wrote down the names of my four great-grandmothers on a piece of paper and carried it about with me in my pocket. I’d never met any of these women but I knew a little of their life stories and just how strong they were. That was the degree of female strength I sought, so they went everywhere with me, in and out of consulting rooms, into pre-op rooms and they came to rest softly under my pillow when I slept.

As a writer I had a vast internal landscape and I called upon it. I flitted in and out of imagination. I wove together some sort of tapestry from scraps I could lay my mind upon, from stories I’d read as a child, from characters I’d invented. Then there were the dances I’d danced and the muscular memory of how they’d felt to perform.

I tried not to pine for the healthy, supple body I’d once had. But that was hard, oh so hard with my body failing me all over again.

Hate, I didn’t want. It breeds a kind of meanness about the mouth. If not love for my body, then maybe some degree of tolerance? Some respect for the dancer I’d once been?

I was more than my body.

Was I really?

Yes, I was.

I was everything that had come before, my lineage, my own personal beginnings. For sure I was a bit more broken, but I still had music.

And words. More words. Small and soft at first.

Plus I had stories yet to write….

I’m by no means through all of this yet. I’m still finding my way, but that process of finding has energy inside of it.

And energy is life.

So I’m still living and digging.

Dreams as Portents

I’ve decided to start a new novel. Well actually, my dreams have decided that for me.

I’ve always been intrigued by dreams. By the environment, the security they provide. Plus, the chance they offer to start over.

When I first became ill, I began dreaming in indigo. What did it mean? I’d never really considered colour in dreams before that. The content was the important thing. Plus the way they made me feel. But a blue so vivid I could hardly breathe? Blue people, blue hills, a blue sky (of course), it was all a bit surreal. But beyond the surreal, it was comforting. In some small place in my life, I was cosseted. I was being rocked. Someone, something was lifting me up and away from the inexplicable fear, the meltdown of illness.

So when I started dreaming of being high up, looking down through what appeared to be an intricately crafted ball of spun sugar at the world below, I knew. And when my view through that sugar ball changed minutely so that I had a slightly different take on that world, I knew some more.

Something was shifting. That was the way it always began. I got to see the big picture first before the detail came flooding in.

The voice of a character came next. Persistent, volatile, more than a touch frenetic and I couldn’t shut it down. Then came another character’s dress down to the tiniest detail. These people, their lives, their hopes and dreams became a regular feature of my dream world.

Does that make me lucky? Probably, yes. But in some ways I consider it a balancing act. Everyday life with illness is tough. There are days when it’s a constant barrage of pain and irritants with only the odd smudge of half-light as comfort. So it seems only fair that to compensate there should be a certain calibre of richness to my dreams.

I have many questions, many concerns. The first being, just how am I going to write this novel with such limited energy and resources? For write it, I must at least try, if only to appease those beautiful people in my dreams.

I will just begin. That is my only answer. Each and every day, I will begin and begin all over again. Some days will inevitably have less beginnings than others. Some days I won’t even manage written beginnings, instead I will create a breathing cherishing space inside my head, something like a life pod where my story, my characters can sit back, take in some sun.

Ironically, I have more of the time in the world than many struggling to write, but much less of the energy. But isn’t it always about balance? About finding a way to walk the tightrope so you never look down, you just shuffle along, small, infinitesimally small steps? And if you do happen to fall off, you just dust yourself down and hop right back on again, if hopping is your thing. Or perhaps you glide, shimmy in from the west, turn a pirouette or two…..