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?

A Little Like Hope

There are patterns that shape you.  Experiences that make you who you are.

Being sick for the last six years has fundamentally shifted my expectations of life. After all this time, I’ve been in a pattern of expecting things to get worse. I expect things to be hard. I expect side-swipes and surprises and I expect to find ways to cope with all that. But I never expect things to get better. Being optimistic about my health is something I have avoided for so long. All the science, all the ways of being that my body has trained me to accept.  All of these things have shaped my thinking. Being positive about the future of my illness always felt like a redundant pastime. A fruitless and futile exercise in wishful thinking.

So instead I have been resolute. I have tackled my illness like a maze. I have tried to be systematic in my research; I have sought the counsel of wiser science brains than my own. I have searched and pushed and applied myself to finding solutions. And that has been a wonderful focus for my mental energies. It’s less of a dare to the universe than positive thinking or pollyanna prayers. It has seemed logical and appropriate.  Define the problem, seek a solution.

And despite my beliefs that only a logical solution could fix my problem, just recently, the problem has been evaporating. Like the puddles leftover from our long, wet winter. The sun is beating down and shrinking the periphery. Rendering hard clay from the mud and quagmire. Setting my feet on solid ground. I’m feeling well. I’m exercising. Last Thursday I did pilates and followed it up with a walk in the country with my girls, Bee and Lulu.  I walked along the road and back again!  If you have been following this blog, you will know how extraordinary that really is. Where before even one of those activities would have put me back in bed for a few days, I have backed it up with more activity.

I walked! With my girls Bee and Lulu. There,

This weekend I’m in town with my hubster.  The last time we did this was a year ago. And it was so very different. I have no cane. Instead of sitting at the table, wondering if I can stay upright in the seat for the duration of dinner, I sat comfortably and talked with him there for three hours!  We enjoyed a six course degustation menu and a conversation that spanned worlds and made us laugh like we used to. We celebrated. Ten years of marriage. Parenthood. And something we’ve been a bit worried about celebrating. We celebrated my wellness. We’ve been so afraid that to acknowledge how well I am doing would tempt fate. So we haven’t. But last night we talked about it. We exhaled. We let ourselves enjoy this beautiful, fragile thing.

Want to know what feeling well is like?

It feels a little like hope.

I walked! With my girls Bee and Lulu. There,(1)

Words, Margins, Bias and a Small Whisper

I have a very loving relationship with words. Words and I have been going around together for many years. But sometimes, words disappear and I am left floundering without my dear friend. Lost in the land of no writing. When that happens, I try reading. I listen to music.  I try to be more observant of what is going on around me.  I try to find the ‘muse’. But she is even more elusive than the words.

So I am just going to collate here a few things that have been skipping around my brain, skirting the edges and looking for a place to land. Usually these things arrive for me all packaged up and ready to write, but not this time. So bear with me while I purge to the page, all the little bitsies that don’t seem to fit anywhere in particular.

First and most importantly:  I got my histology results!  The “margins were clear,” which means, no more high grade pre-cancer cells proliferating on my cervix. Woop!  I am so happy about that!  It was such a weird sensation to get that news, because I wouldn’t have been at all surprised if my luck really was that bad. Ya know?!  (I’ve been reading about types of cognitivie bias, thanks to my friend Beth… this type of thinking is an example of negative bias.  You can read about 9 other types here). So I am thankful and happy and so full of the joys of spring over that very good news! That medical terminology about margins… it got me thinking about the margins of society, how some things are marginal, and some people are too.  I thought about how often I doodle in the margins. And I wanted to write a post about that, but I couldn’t make it happen. So instead, a paragraph. The margins were clear. And… exhale! By the way, did you know that Colin Firth is not just rather attractive, he’s also deeep?!  Lookie here…

 

If you don't mind haunting the margins,

During the course of my Be.Leadership programme, we have examined the concept of unconscious bias. All forms of bias. The challenges to clear thinking and accurate assessments of situations. I think being able to identify bias is a really important criticial thinking challenge for all of us. Particularly at this juncture in human history.  My cousin posted this on facebook from the Dalai Lama.  It says it better than me.  But do look also at this article if you are interested in discovering the types of cognitive bias that might be dogging your thinking. For me it is a constant search and stretch as I seek objectivity and good decision making, as a mother, friend, wife, sister, daughter, citizen. I think of these biases as ways of thinking that adjust my sails. My course can be drastically altered and I can end up way off course if I let them influence my thinking without conscious awareness.  Being aware helps me to counterbalance my thinking.

If you don't mind haunting the margins,(1)

So that is me and my jumble of thoughts today.

I also want to tell you, but almost in a whisper, just so I don’t jinx it, that I am feeling really good. Stronger. It’s not what I expected as I begin to wean off the meds that have helped me so much. So… fingers crossed.  I’m going to employ some gambler’s bias (‘it’s a winning streak!’) and let my ship sail quietly into a safe harbour.  I’ll stay there as long as weather permits.

Shhhhh, let’s not rouse the wind from it’s four corners.  Shhhhh…