Off to hospital tomorrow. Up since 1 am today.
I hope there will be rabbits, carrots and a doctor in a green suit with a bow on his tail–that’ll make it better, for sure.
I used to think of hospitals a safe places. Nothing could go wrong as I lay nestled in the arms of all those bright caring people whose only wish was to make me well.
But it isn’t really like that at all. There is too much fear, pain and waiting and not enough hands to hold, time to talk or water to drink. Pulsing need radiates out of every bed making the halls vibrate with a high pitched buzzing that doesn’t reach the ears. The tiny hairs on the arms and the back of the neck register the whine. It is evidenced in the restlessness of the visiting bodies, the too wide smiles, the forced cheerfulness and the darting eyes in search of a place to rest. Small shrines of flowers, fruit and cards do their best to impart hope, to quell the shrill staccato-like fear and the dull helplessness that emanates from each curtained cubicle.
Hospital is where you go when all else has failed. It’s the final option and everyone inside knows this. For some it is the last stop and for others, hopefully including me, it’s a pit stop, a place to have our wheels aligned and oil changed before going back out for a few more laps. It’s a tired and lonely place, an assault on the senses, a limbo space between life and death.
I’ll be counting down the days until I can be back in my own bed.
In four and a half hours I see (yet another) neurosurgeon. I have been waiting for this ‘emergency’ appointment since October when I started falling over on my right leg because I couldn’t feel it hit the ground.
I have been shelving the pain, parking the panic and trying to carry on with my life, my work, my school, my loves and my friends. Whenever the fear and pain threatened, licked at my heels I would try (sometimes successfully) to postpone it, to tell myself that there was no point in going into those feelings and I would work to stay firmly at their edge. But, as this appointment drew closer my resiliency eroded.
Over Christmas pain began to fray the edges of my world, pushing resolutely through the mysterious shield I had managed to maintain until that point. Then three weeks ago the nightmares began. Chaos, uncertainty, grief and loss filled my dreams. And over the last few days I have noticed my permeability, I can cope with very little and the smallest of things fuels feelings of worthlessness, despair and defeat.
Now that the day is here I feel numb.
I don’t want to hope for a solution, because my experience over the last three years has taught me that there isn’t one. I don’t want not to hope either, one has to keep fighting, right?
I don’t know how to do this. I long for a guide, a blueprint, to tell me how I should be coping, what I should be thinking. I want to hear from other people in pain living with disability, because while the words of my able-bodied, pain-free loved ones are essential, their advice doesn’t sink in, instead it reminds me of the gulf between living this and living that.
I find myself flitting between despair and gratitude. I list repeatedly the things I am grateful for, and there is so much. I love my life, my family, my friends, my job, my boss, my partner, I love school and my home. I am happier now with who I am and with the totality of my life than I’ve ever been. Weird, huh?
Writing helps, somehow putting it down lets me look at my experience, turn it over in my hands, register it. And so I send this missive out to the universe and back to myself. Thanks for receiving it.
p.s. the title comes from a beautiful Audre Lorde poem called ‘For each of you’
Ok, so I’m supposed to be mired in essay writing (I’m not), and life should suck because pain is a constant companion. However, I’m feeling ok. Happy in fact!
So just in case you aren’t in the same space, here are a couple of videos that can’t help but make you smile…or even laugh out loud.
“Some prisoners spent more than ten years buried in solitary cells the size of coffins, hearing nothing but clanging bars or footsteps in the corridors. . .[they] survived because they could talk to each other by tapping on the wall. In that way they told of dreams and memories, fallings in and out of love; they discussed, embraced, fought; they shared beliefs and beauties, doubts and guilts, and those questions that have no answers.
When it is genuine, when it is born of the need to speak, no one can stop the human voice. When denied a mouth, it speaks with the hands or the eyes, or the pores, or anything at all. Because every single one of us has something to say to the others, something that deserves to be celebrated or forgiven by others. ”
― Eduardo Hughes Galeano
…and now I know it was with good reason.
Words and thoughts swimming through my head, streaming through my veins like tiny little fish. Are they heading home? Out to sea? Maybe they’re just circling the dirty bowl of my mind?
I used to write here when this happened and it brought some rest, maybe even clarity, definitely a modicum of relief. But I haven’t written here for some time and it makes me sad. Not faded-blue-jean sad, not lost-a-loved-one sad, but a kind of curling in at the edges sad. Unnoticeable to the outside world, but quietly present for me.
When I started writing this blog I was on my back, in pain. It had been three months of fear and isolation. I had been physically ‘normal’ before and had never known what it was to not be able to do what I wanted to do with my body. I had never been so removed from the day to day hustle and bustle of life. I felt frightened and isolated. I hated London then, didn’t want to be here and longed to return to Canada; to family, friends and a familiar health care system. But I couldn’t sit, lift or walk, and therefore couldn’t fly. I felt trapped like a butterfly under glass, a pin through my center.
Things are so different today. Gratefully, thankfully I acknowledge this. I have had spinal surgery, I can sit and I can walk. I can live an almost-normal-life. I am studying to become a psychotherapist. I finally own my own flat. I have a job I like. I don’t hate living in London. And the other new thing is, I am single. My life feels novel, challenging, and exciting all at once.
So, this blog, and the writing of it…well, it causes me a lot of pause for thought, months of pause in fact. Most of the those who follow it are people I don’t know in the flesh (the fact that anyone follows it is amazing, but not the point of this particular diatribe). It’s wonderful to have followers, incredible in fact. However, some of my followers are friends, family and ex-lovers, people who know me in the flesh, and sometimes this poses a problem.
I want to write about my insides, the paths my mind and heart take, and sometimes the places I go may not be particularly easy for those who love or have loved me.
So, what to do? I have wrestled with the answer for some time now and I am no closer to clarity. I hear one of my friend’s word’s in my ears–she doesn’t understand why I need to write and make it pubic. Can’t I just write a journal?
I do write a journal, but it’s different, has a different quality and serves a different purpose. I think I write there when the swirling is so strong that there is no clarity, no picture in my mind, when I can’t see my feet or my hands for the storm. I write here at the next stage, this is expression, part of the process, not solution. Something about writing here and sending it out makes me feel like I am setting it free. When I write in my journal I close the cover and put it back on the shelf, it stays with me within the walls of my home. But this doesn’t.
Perhaps this is naive, because, in fact this continues to exist, in cyberspace. I have no control over who reads it and how it is understood. And yet, I yearn to write here. Not all the time, but at very particular moments; swirly moments, like today.
Alongside my friend’s voice asking me why I need to write here, I also hear my Dad’s.
I remember asking him, when I started this blog, to let extended family members know about it, that way I could avoid having to repeat my lack of progress over the phone. I found it difficult to tell loving, well-meaning and caring family members that things weren’t getting better, that I was becoming increasingly despondent and that, at times, I felt like there was no hope.
I started the blog because I needed to write about the messy raggedness of the situation in order to deal with it. I talked to my Dad about my fear of worrying people and the fact that I could not write about my life without outing myself as a lesbian. My family who know me, know I am a lesbian, but my extended family, family I’d never met before and who are close to my Dad, might not have known. I worried about how they might take it and whether they would blame or pity him, whether my selfish desire to write might inadvertently result in his suffering
When I expressed these concerns to my lovely Dad he told me to always be myself, not to worry, and never to hide or be ashamed. This meant the world to me and still does.
And so I am back to the question of what to write and whether to write at all. I worry about exposing my underbelly and confusion, particularly to people I know. Will they worry unnecessarily? Will they use it against me? Lord it over me? Hold me static assuming I am only what I have written, instead of understanding it as part of a process? Is this all too much to ask or expect from loved ones? Am I worrying unnecessarily? Perhaps making a mountain out of a mole hill?
I would really value knowing what you think? And, if you do think I should continue to write about my life as I am living and questioning it, do you have any wisdom on how to live with the exposure and vulnerability?
All thoughts welcome.