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

How are you?

If I met you, I’d smile.  
Maybe you’d ask me how I am.  And my smile might wobble a little.  It’s not a question I can easily answer.  I don’t want to lie, but if I told you the truth of how I am, you might do that little sliding sideways step and make a mental note not to get stuck next to me next time. So I’d say
“…fine, thanks.  How are YOU?” and we would talk about that instead.

But I think it might be time to break out the real answer.
“I’m not doing so well”.  Thanks for asking!

My name is Rachel and I have a neurological disorder that is a dysfunction of the autonomic nervous system.  That means, all the functions of the body that are automatic.  Breathing, Heart-beating, Blood Pressure, Temperature regulation, Digestion, Bladder and Bowel functions.  Just a few of the things that make our bodies efficient places to live.  In my body, all of them are affected.  I have a pacemaker to assist my heart and medications to help with the rest.  They are the ambulance at the bottom of my cliff. But when you look at me, you can’t see how I am falling.  They call my illness an ‘Invisible Illness’.  It isn’t easily apparent. On my worst days, I’m in the emergency department, or here, in my bed.  Dealing with all manner of broken body problems. I might be tapping away on my keyboard. Connecting with the world in the best way I can, out of sight.  But on my good days, when I am visible, I might be beside you, chatting about how you are, and smiling. Looking fine.

There is no cure for Dysautonomia.  My doctors haven’t found a cause, but for some, a cause may be found and a treatment begin.  For the majority of us, ‘treatment’ means symptom management. A regime of medications and interventions; it is a ride on a runaway roller coaster in an abandoned theme park.  Frightening, unpredictable, overwhelming.  Autonomic dysfunction like mine is more commonly seen in late stage Parkinson’s or Multiple Sclerosis, but without a primary cause it is rare. There are few of us in Australia and New Zealand, but we are resourceful!  We have found each other on the internet and we work together to find information, resources and hope. I cannot imagine how it must have been for people with rare diseases before the internet.  It makes me want to cry imagining how very isolated they must have been.  I am so grateful for my finger tapping friends all over the world.  Shouting a two dimensional hello into the ether.  Arms reaching far across the digital divide with comfort and solidarity.

So, How am I?  Really?
So frustrated, so scared.  See, I have two kids and they are still so little.  Zed is six and Bee is nine.  I linger at bed times, holding them in my arms, always for just a bit longer.  My lips against the hair on the tippy top of a warm head, my cheeks pressed up against the moist stamp of little hands. My thoughts, always on what the future may hold for them.  My heart in my mouth and my own hands grasping at the time slipping right through them.  I want to be the mum who walks beside her grown kids, head up high, laughing and joking. Not the incontinent invalid, too spent and struggling to keep pace with the conversation.

I’m heartbroken, so sorry.  See, I have this husband.  He’s the best man I have ever met, and I got to marry him.  He’s tall, and lovely and practical and smart.  When we argue, we make up.  When we struggle, we push through.  When we love, well, there is no song, no poem, no flower that could help you understand.  It’s friendship to the power of two.  It’s trust in the face of despair. It’s warm and good. It took me so long to find him and then, Dysautonomia found me.  How is that fair?  It breaks my heart that he has to live my diagnosis with me.  My husband; my friend.  A commitment in sickness, but where is the health? I want to be the wife he can run away with, when our child-rearing is done. The wife he can play with; he’ll chase and I’ll run.

I’m lost, so empty.  See, I had a great career.  I was a teacher, and I loved it.  I worked with kids who had exceptional ability.  My last job was teaching a small group of gifted child writers. And I still think about every child I have ever taught.  I still yearn for a classroom of my own and a chance to engage in those exchanges when learning is the light illuminating our world. Where sparks fly and inspirations blaze.  Where questions and commentary, connections and community fill me with hope for the future of our world.  I miss being their teacher.  I miss seeing them shine and watching their possibilities unfold.  I want to be the one lighting the bonfire, I have so much tinder for the fire. But now, I just teach myself. Patience.  Every day.  I grit my teeth and get through the next thing, I swallow my shame about what my body won’t do.

But I’m really glad you asked how I am.  Because even though I am all of those things I write about above… I am also amazed, so genuinely gobsmacked by this life. I have lost so many of the things that meant so much to me.  I had very specific plans for my life, for all the things that I thought I should achieve.  But I am finding out something quite extraordinary.
I actually have, SO much.

I have everything that matters.  

I have love.  I have a purpose.  I have words (and I intend to use them!)  Being sick is not a picnic.  But it is a bit of a fast track to finding your true self.  And in spite of everything, I am back to the basics of Rach. For the first time in my forty years of life, I like me. I have so much more insight and empathy than I could ever have had before.  I am writing and connecting.  I am meeting ‘my people’, from right where I am.  In the comfortable discomfort of the present situation.  From my bed.  From a place of real true, me. I feel all these sadnesses, all the fear and loss and frustration.  But I also feel a peculiar kind of free. 
I feel like I have found: me.

I turn and I smile, at you.

Because, actually, I am fine, thanks.
But truly, how are you?

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