What’s in a word?

I’ve always loved word play. So when I started this blog, playing with the ‘chronic illness’ part of my title made perfect sense. I wanted to chronicle my life, a record of my thinking for my kids, a resource for other patients, a place where I could write through all the issues I was facing. So calling my blog The Chronic-ills of Rach was fitting and mildly funny.  I think even then though, I was hopeful. I didn’t reserve that name as a domain name, preferring to use rachelfaithcox.com instead.

And life, sometimes, does beautiful things and turns in directions you never expected. I’m in remission, I’m out and about. I’m working and being an active parent. I’m enjoying all the offerings of life in well-land! And it feels quite strange to have a blog called the Chronic-ills of Rach when right now, illness is not the all-consuming factor it used to be in my life. So I have amended my blog title. I wanted to do it this way, to pay homage to the places I have been.  But I’m no good at coding and my blog theme is too locked down.   This is what my title image would have looked like if I had those skills.

the CHRONICLES

It feels like it’s time to move and grow.  The Chronic-ills of Rach will become the Chronicles of Rach, and I will continue to write here.  About the full range of things that happen in my world. Maybe that will include things about remission, maybe relapse (but I really, really hope not!) and maybe there will be more about living life on the outside after a long time living on the inside.  Maybe you’ll come with me as I traverse these new paths? I’d love you to stay.

It’s been frankly quite weird going from mostly horizontal, to a job (plus size modelling) where my work is almost all standing. What a wonderful thing to get to experience the pampering and glamour of having my hair and makeup done by someone else! I’ve been learning all sorts of new tricks about how to make the most of my outward appearance. I feel like I have stepped sideways into a different dimension, into someone else’s life. And it would be a cinch to just drift away on the ease of feeling well, to take it all for granted and live the life that others seems to lead. It’s just that I can’t. I can’t forget and, well…
I don’t want to.

For me, all this outward beauty stuff is truly delightful. It’s a treat. It’s what so many little girls dream of.  Playing dress ups for a job! But I am keenly aware of the fact that outward beauty is ephemeral. There is smoke an mirrors, there is photoshop. There are skilled artists who sculpt and paint and tease and curl. It’s all very beautiful, but it is not soul sustenance. True beauty, the beauty I care about, is soul deep. And that kind of beauty is accessible to everyone, even without a team of hair and makeup and the skills of talented photographers!  True beauty shines out from the insides. And it is only created through experience.  Through living all of life’s highs and lows.

chroniclestitlechangeimage

So, from a girl-all-at-sea, into a fast world of action and busy-ness, I stop and survey the terra-firma. I hope to keep one eye at all times on the things that matter most. People. Connection. Communication. Kindness. These things easily get lost in the cut and thrust of everyday life. Mine is a strange shift of fortunes and I want so badly not to lose the lessons that washed up with me on this shore. I will gather them. I will continue to write about the things that matter.

So, welcome to my new/old blog!  Will you be hanging around?

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