The Grammar of my Fears

Note: the lyrics in this post are a collection of lines from three sources.  I have combined them in my own order.  The original writers of all the songs are Emily Saliers (of the Indigo Girls), Rob Hyman, Eric Bazilian (of the Hooters) and John Denver.

I drove across some of the most beautiful countryside in the North Island today. Listening to the music of my young years.  The Hooters and The Indigo Girls might be odd CD-stack neighbours, but they harmonized with John Denver to give me a soundtrack that melted the miles into memories of my past.  I love them all fiercely and sang loud, alone in the closeted interior of the car. Green fields and cows whizzed by my windows as I lost myself in lyrics I had forgotten that I remember.  Holding the notes for just that bit longer than the song called for; holding on to the ephemeral essence of earlier times.

Where do the children go?  Between the bright night and darkest days?
If I had a song that I could sing for you,
I’d sing a song to make you feel this way

And if you break down, I will remind you, Ooh of what you were yesterday
Oh mercy, what I won’t give.  To have the things that mean the most,
not mean the things I miss…

All you zombies, show your faces… I know you’re out there
All you people in the streets… I see you

as the bombshells of my daily fears explode,
I try to trace them to my youth

I squeeze the sky out but there’s not a star appears;
begin my studies with this paper and this pencil

and I’m working through the grammar of my fears…

My road trip today was to visit the hubster’s dad.  He and his wife are over eighty, and in the cruel nature of old age, have been weathering one health crisis after another. This time, it was John’s turn to be rushed to hospital.  The nature of his emergency sent him south, so he and my mother-in-law are in different hospitals, hours away from one another, and hours away from us. I make mental notes to myself to move nearer to my children if I make it to my eighties. We’re so far from them. It makes it hard to be the moral support they need, let alone the physical help. So today, I was visiting John.  He’s the sole carer of Mary, who has Parkinson’s Disease. Between them, they have been in hospital more than out of hospital over the last year, and it has been a very hard road. My heart goes out to them, so far from one another. Like teenagers, they get told off for hogging the hospital phones. He wants to know how her dinner was last night. She wants to know if his feet are warm. She wakes up alone and panics, wondering where she is and why.  He wakes up alone and knows there is a long rehabilitation road ahead if he is to bring her home again. Mid conversation with me, he sucks in a quick intake of air, trying to hold back the tears. His eyes lock onto mine while he tries to wrestle control over his emotions. The tears come anyway. It’s not kind, old age. Life is always too short, even when you’ve been alive a long time.

It makes me thoughtful. The whole way home I am ruminating over that line from an old song.  About the things that mean the most, not being the things I miss. I think about how much I have learned in all these years of being alive. And how so many of those things are unproductive, unhelpful, unkind to me. I am unlearning all the things that have kept me from happiness. All the insecurities and fear of failure, all the horrors that because things have happened before they will again. I think about all these fears that have shackled me. And about how I am breaking free of them.  I’m examining the context and syntax of every one. And scratching my pencil through ingrained thoughts that I have taken for truths. Thoughts that don’t stand up to scrutiny.  Every thought that stops me from enjoying my health and freedom. How ridiculous they seem, laid out in front of me. Relics of my childhood, ready for an edit.  I don’t know a better way to live my best life than to do this.  Working through the grammar of my fears.

Maybe you have fears like this too?

When I was really sick, I promised myself that I would not take health for granted if I ever got better. I promised myself I would live a life not bound by my fears. I would seek opportunities and take them.  I would find the areas that filled me with insecurity, and tackle them. Look for experiences that fill me with joy and collect them. So that is what I have been doing. Last Sunday, I did a lingerie shoot.   Out on a windy grassy, knoll, in full view of the public utilising the walking track that skirted the location; I took off my clothes and posed for photos in my smalls. It was liberating! I think if I can do that, I can do almost anything!

PIcture from my lingerie shoot of my legs and the statement "I am unlearning all the thoughts that have kept me from happiness. One faulty line at a time" Rachel F Cox

I’m going to leave you with a verse from a beautiful song. Think about those young years… who you were… who you want to be. Maybe there’s some editing to your interior monologue that you want to do, too.

…when we last talked we were lying on our backs,
looking up at the sky through the ceiling
I used to lie like that alone out on the driveway
trying to read the Greek upon the stars, the alphabet of feeling
Oh I knew back then, it was a calling that said: if joy then pain.
The sound of the voice these years later
is
still the same.
-Emily Saliers

Standing, still. Moving forward.

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The lights cast a soft whiteness across the photographic back drop. The studio is quietly humming. The equipment pops and flashes for each shot. Nods and short sentences between the photographer and stylist. I’m standing there, in my tenth outfit of the morning, swishing one way and another, a small dip of the head, a smile at some imaginary friends, a little on-the-spot walking action… it’s a sequence of movements like a slow motion dance. I am handed a bag, someone teases a rogue section of my hair.  Someone else adjusts my sleeve so the wrinkles will fall ‘just so’. I am modelling.

I smile at the lens, my mind racing along with the shoot, keeping up but in a parallel reality. I’m stunned by the surrealism of it all. I find it hard to compute that I am here, doing this. I’m not sure how long it will take me to adjust to feeling this way. Only 6 months ago I was struggling to manage daily life. Standing was my nemesis. Yet I have been on my feet for two hours straight… and I can still smile. Flash!  Pop! I feel my calves flex to keep my balance in my size-too-small prop shoes. I’m really doing this. Still standing.

“That’s it, we’ve got it!” smiles the photographer. The stylist and makeup artist give each other a high five. We. Are. Done.  Everyone thanks everyone. I change back into my own clothes. And just like that I clock off from another shoot as a curvy model. It’s such a fun and affirming thing to do. I feel like the luckiest girl in the world. I’m being paid to try on clothes and show people how they really look on a curvy body. I’m contributing to the kind of online shopping environment that works for curvy girls. I can’t count the number of times I have not purchased online, because the model looked too small for me to really understand how the clothes would fall. It makes me happy to think that there are DD-cup+, curvy girls out there who will purchase clothes this season because my boobs and bum provided some realism to help them with their shopping choices!  Here’s to the bootylicious bods out there, and some fair representation!
Here’s a grainy phone picture of me all glammed up, on my way home from yesterday’s shoot:

I’m really doing this. I'm still standing.(2)

But besides the representation of plus-sized bodies, the glamour and the fun of doing a shoot, there is always something running along underneath, for me. An incredulity. An awareness that just standing is still a dream for so many of you, just as it was for me, not so long ago. I remember how that felt, longing for a body that could do the normal stuff; every present moment is echoed with the contrast. I carry my past with me, I carry a knowledge that I can never forget.

And it is precisely because of all those years that I am seizing the day! I am doing what I can, because I CAN! But I have not forgotten you, out there. I stand for you as much as I stand for me. With every health win, every symptom I walk away from, with every medication I wean off, I am laughing in the face of Dysautonomia. Take that!  See this? Wham. In your face mother plucker! I so hope that if you have been following my journey, you feel me carrying you into everything that you cannot do. Into all of my upright hours, through all of my busy days. You are with me, in spirit if not in body. Your own body biding it’s time, battling it’s own way through the maze. Hanging in there.

I stand for you.

I stand for a world that is kinder to people like us.
I stand until you can.  I will stand as long as I can.
Hang in there my friends.  Hold tight. Never, ever let go of whatever it is pulling you onward.  Because if this can happen for me, then that means, it is possible.  If I have this reprieve, this time of plenty, this freedom to be who I always used to be, then why not you, too?

It’s a paradox, but nonetheless, here I am standing still and moving forward.
Kia Kaha.

*the necklace in the image above is from Uberkate. She ran a competition last year for women to nominate their friends/sisters/mothers using one word for the pendant.  My friend Nettie nominated me and chose the word ‘standing’. My sister in law Cathie seconded the nomination.  And they won it for me! It is a necklace I treasure.  I wear it every day and it draws me back to my purpose every single time I look at it. Thanks Nettie, thanks Cathie, and thanks Uberkate!
** Nettie has a blog called I Give You the Verbs. Which tickles me, because in winning that necklace for me, she literally gave me the verb! 😉

Copping Flak

Today I want to tell the story about when I copped flak for telling it like it is. For telling the truth of life with invisible illness. Sometimes that truth is painful and upsetting. Sometimes it is traumatic. I tell my stories because there are others who cannot tell theirs. I speak up. And sometimes I get knocked down for it.

use our voices

It has been a wrench for me, to spend less time on my blog this year. I’ve been doing a course run for people in the disability sector. It has kept me really busy, and my improving health has increased my ability to be out and about. But I have missed you. This blog is very very important to me.  I was going to say it was a piece of my heart, but the truth is that this blog IS my heart.  My heart for my family, my heart for people suffering with invisible or chronic illness, my heart for our world, my heart for myself. It’s my heart, spilled onto the page, shared with people so that people like me can feel less alone and so that I can, too. Shared because I know how important it is to share the realities of life with invisible illness. I know that, because you beautiful people have told me that.  People who are not sick themselves, and people who are.  People who care. You are an extraordinary bunch and I am glad you came to my corner of the internet.

Publishing out here on the world wide web is a broad platform. Anyone can read your words.  Everyone who does, will read them through their own lens and make of them what they will. Being misunderstood about my heart is a painful thing. But it is a part of blogging.  In that sense, it is no different to being out in society.  People react to you in varied ways.  Not everybody likes you. And just in the same way that invisible illness is overlooked and misunderstood by society at large, sharing my stories here doesn’t guarantee that my heart will be understood.

Last Sunday I awoke to an awful thing.  Someone I respected and had a connection with through my course, had posted about the types of stories disabled people should not tell. In itself, that is just his opinion. He’s entitled to it. But one of my posts was linked as an example of what not to do.  It’s a small thing in the grand scheme of things. But it was a very big thing for me, to have my heart skewered in the public forum that way, in a sector of society I am part of and care passionately about.

People who are disabled due to illness make up the largest portion of the disability community here in New Zealand.  Our stories of disability due to illness are valid expressions of our lived experience.  They are our own. We tell them in our own words and from our own hearts. It is traumatic to acquire disability.  That person called for people with invisible disabilities to harden up. The words ‘portraying ourselves publicly as traumatically wounded’ linked to a post I wrote about dealing with the question
‘how are you’.

Every person in the disability sector has their own unique way of ‘being’. That’s just part of humanity, we express ourselves with infinite variety because we are diverse, because self-expression is the stuff of art, of poetry, of what makes us people. Competing over who has the most valid disability voice is counterproductive to shaping a society where all people are valued equally.  Suggesting as they did, that our unique voices should only be used to tell ‘way to go’ stories, is ridiculous and dangerous. It is the opposite of raising awareness and a worrying call for self-censorship which does not serve the invisible population. We speak out because our voices can be heard when our disability can not be seen.

I was gutted about receiving this flak because it came from within my sub-group of society. I see now that people with disabilities acquired through illness are not necessarily considered part of that group by people who fit a more traditional definition of ‘disabled’.  But we are part of that group. How much stronger could our presence in society be felt if we worked with each other, rather than against?  It seems to me, that the disability sector has a lot of distance to traverse within it’s own community, if we are to ever hope for true understanding outside of it.  How can we expect understanding and acceptance from others, if we don’t practise it ourselves?  Why all the political bullshit?  Must we?  Why can’t we just be kind and move forward?

I thought about putting on a flak jacket and advancing into the fight. I don’t like injustice. I don’t like bullying. I don’t like influential people being mean and thinking that is all just part of a provocative debate. But I can’t build a kinder world by being mean myself.

Instead, I have written to that person and to the people in my course.  I have withdrawn from the programme because I can’t continue there with any joy. I don’t need that course to make a difference. I don’t need to graduate to know that I have something to offer.  I am me, that is enough. So I returned here to my blog.  I don’t write for the people who don’t see my heart in my words. I write for you. I write for me.  I write to shine a light on the things not seen.  I see you, out there. I hear you. And I hope if you are writing your stories too, that you won’t let a flak attack stop you from sharing the things that matter.  And if you are reading the stories of people beneath the radar, keep showing them your support.  We are always stronger, together.

From my heart to yours. x