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

Parking your Objections

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See that girl over there?  She looks like she is in the glow of good health. Her cheeks are flushed, her hair is shining. Why is she using a mobility park?  Oh my word.. she even has a cane, but no limp!  She’s a faker for sure. Does she think she is too important to have to walk 10metres? Who does she think she is?! She must be using someone else’s pass and cane.  I bet they’re her Grandma’s.  You’ve heard them do exposes about exactly this kind of deceitful self-centredness on the TV.  It’s outrageous!  You are so incensed you decide to go over to her and give her a piece of your mind.  On behalf of all the truly disabled people.  You’ll speak up for them!  It is your civic duty!

You catch her just before she enters the supermarket.  She turns at your shout, a smile ghosting away from her face.  Her eyes seem clouded.  Maybe she is tormented by guilt!
“Hey, YOU!” your voice is angry.  Your finger is stabbing the air in her direction “You can’t just breeze into one of those parks and use the pass of someone else!  It’s not on!  Those parks are for people with WHEELCHAIRS.  That’s why there’s a wheelchair on the sign!”  You are full of justified fervour,
“…I don’t see a wheelchair!  Go and park somewhere else and LEAVE THE DISABLED PARKS FOR DISABLED PEOPLE”. Her lip looks a bit quivery, you notice with satisfaction.  She better not try the sob story with you.  

“Thank you,” she says, her voice is controlled, “for looking out for the rights of people with disability.  Although you don’t see it, I am one of them. I have a progressive neurological disorder.  You can’t see my disability by looking at me. I find it hard to walk far, but I like to do what I can when I can”

She sounds like she has said that before. She turns and walks away.  You feel awful.

How were you supposed to know? She looks fine!  Your outrage fizzles, your hand drops down by your side.  You’re feeling a bit like a rapidly deflating balloon.  You stand at the entrance to the supermarket feeling a conflict of emotions.  You were only trying to do the right thing!  You watch her walking away, and you wonder about what is wrong with her.

She looks normal…

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Dysautonomia is a strange thing. There are ebbs and flows, bad days and sometimes, better days.  As my old friend John Denver put it.  “Some days are diamonds, some days are stones”. On those days that are stones, I have usually sunk to the bottom of my get-up-ability. I’m not driving.  I’m certainly not parking. And nothing is getting done that needs to get done. A stone day is often followed by a series of scrape-yourself-up and push on days. They’re days when I am definitely not rocking it. They are really hard days. I might make it to the supermarket and be able to budget the distance to get something essential.  On one of those days I’m unlikely to make it around the whole place.  I certainly wouldn’t make it to wherever I need to get to within the store if I have also had to walk the length of the carpark, there and back.

I have a mobility pass for parking. I use it when I need to.  But I am careful. If I am able to park in a normal park, I always do.  If I am able to walk further, I will.

I have a fierce determination that if there is anything I can do for myself and my crew, I always do.  In order to maintain that kind of control over my life, I need to use the services our community provides for people with limited mobility. Sometimes the symptom-ricochet for pushing through is swift and severe.  But sometimes, even that is worth it.  Because I like to do for me.  I think it is good for me, good for my body and good for my brain. I’ve been told I need to get better at accepting help, but I don’t know…  I think I need to keep doing as much as I can while I can.  It matters to me very much. Maybe there is an element of pride in there that I will have to examine at some point.  But in the mean time, I do what I can whenever I can. I use my pass if I need to.

My cousin’s husband has a specially modified vehicle because he is only able to mobilise in a chair.  He has quadriplegia after a disastrous rugby tackle. I have seen first hand the frustration when people have parked too close to his vehicle for him to get back in it.  I have watched cars, circling carparks on a busy day; duck into mobility parks for a quick dash in to the coffee shop, because there are only mobility parks free.  Sometimes, I too have looked through the windows of cars parked in those spots, searching for mobility cards, wondering why the people are parking there, wondering if they are legit.  It’s grossly unfair that there are people out there abusing the service provided for people who legitimately need it.  But there are also people out there abusing the people who legitimately need it.  Not all disability is visible.

The point of this post is just to ask people, well meaning people, to adopt a considered approach to their wonderfully caring, on-behalf-of-what-is-right, vigilante advances. Please, first check to see if there is a permit. Don’t assume that it is stolen.  If someone has a permit; they are permitted to park in mobility spaces. Permit applications must be signed off by doctors.  People can’t just cut them off the back of a milk carton. So if a permit is present, you really need to presume that disability is also present, even if you can’t see it.  If you are certain (there is no permit on the dash), alert the management responsible for the carpark.

I wonder, why don’t permits have a photo ID component?  I think that might resolve this whole issue.   What do you think?  Have you seen people abusing the mobility parking near where you live?  Have you ever approached them?

If you would like to read more about how this issue is being addressed here in New Zealand, you can look here.

Here’s my mate, singing about those days of diamond and days of stone.