Thursday, 18 September 2008

From The Trenches

I’d give my right arm to be worrying about a common cold, the weather, or what time Winner’s closes. That’s what normal people do, and boy oh boy, I want to be normal so bad. I wonder if I focus on those types of things that it may be a way for me to pretend that life is normal. And then maybe I could kid myself into believing that I am not ill and never will be because I am one of the lucky, the fit, the chosen. I would belong to a group of people with a vocabulary for what we are.

Having Stage 4 inflammatory breast cancer (IBC), and really I’m sure, any terminal illness is like watching a turtle head for the beach. It is slow and it is inevitable.

For those who don’t know me well, I am a voracious reader. Words have helped me through this illness almost more than people. I have discovered though that along with death being taboo, so is serious illness. You would think that there would be a lot of literature written about illness, and you would be wrong.

Virginia Woolf wrote an essay On Being Ill where she wonders why illness has been denied a place alongside ‘love and battle and jealousy’ as one of the themes of literature. Woolf declares that as a consequence of this denial, illness has never been given its own vocabulary, leaving people who are ill without a language to express our experiences.

In a quote from that essay ‘let a sufferer try to describe a pain in his head to a doctor and language at once runs dry.’

Woolf states that for the sick to be able to communicate their experiences they ‘would need the courage of a lion tamer,’ since finding words to describe what is going on in our bodies is a daunting task.

I have come to know many people who are terminally ill and it is with heartbreak that I listen to their stories of having to be without receptive and sympathetic friends or family or even the words to explain their dilemmas. How many times have I heard the statement ‘they don’t get it, we don’t speak the same language, I may as well be speaking Greek.’

It can be near impossible for the ill to engage society with our stories of suffering. Where we could find solace, there is none to be had. I am thankful and bow to the generosity of my family for letting me talk things through that are important to me.

In our society, illness is something that happens far away and to other people. It certainly shouldn’t happen in our own living rooms. But it does, every day. Maybe because it is an uncomfortable truth and an uncomfortable reality, we don’t want to talk about it. More importantly, maybe we don’t know how to talk about it.

If we don’t put words out there, we think we can make it all disappear. And better yet, we can make sure it doesn’t ever become our experience because we don’t have the words and we don’t have the language.

I agree with Stephen Jenkinson when he states that North Americans live in a grief illiterate society.

The ill know they are muffled. I also have seen the muzzle that some people try to make sure I wear. I think it is a real misfortune that while we are in the trenches, no one wants to hear about it. They only want to know if we have won the war. If the battle is faltering they quickly want to change the topic to Deal or No Deal.

There are no paths for those of us who are ill. There are no words to tell us what to do; there are few words to inspire us. There are few words for us to hear and there are few words for you to speak. Machado states that ‘Paths are made by walking.’ So walk we do.

But I have the heart of the lion tamer and I am going to speak. I am going to speak old words and new words and crazy words and loving words. I am going to create my own language of the ill.


jacquie said...

renee, this statement in your blog:

I am thankful and bow to the generosity of my family for letting me talk things through that are important to me.

is a true testimony of how you have raised your wonderful family.
they are the people you have guided to be who they are today.
they are truly amazing spirits.

being in the trenches is an extremely hard place to be but i will always be there to genuinely listen because it helps you to talk about it and it also helps me to listen and try to understand what you as a person is going thru.
together strong... love jacquie

I am... said...

So well said. I feel the same while not coming from the same path as you. I know what it is like to be a sick person. I think what I want from people is just a compassionate ear. Then a hug. xo

Anonymous said...

What you said about words to describe illness.....maybe the words need to be 'heart words" that can only be heard by those of us who genuinely listen to thosewe lovewhen they speak of their suffering.
I know that when I talk to you,even if I can't find the right words, you still understand me.
I'm so grateful to have you asmy friend.

shelly said...

I can't stop thinking about this blog, it is so profound, I know I definitely don’t have the words to express my feelings about your illness other than to say that I am simply devastated ... I love you

Carol said...

Carol said ... How true this all is. I can feel every word you write. The support of friends and family is very important - right up there with keeping your hopes and spirits up.

Anonymous said...


You always inspire me. Just like the original printing press writers and readers we must move forward into the new generation - blogs.

One day, a new vocabulary for the ill will be integrated into the lives of commoners (those not ill). It will expand their vocabulary on life which includes both health and happiness, illness and pain among other inevitable dualities.

Nadia (#436)

flossy-p said...

This is profound, and beautiful and courageous, and strong. Steadfast, affirmative, devoted and true.

I am proud and impressed beyond knowing that you are filled with the words I am lost for.

And with the bonus time you are collecting, you will make more of them than I ever could.

Emerald Arts said...

Thankyou for bringing me to this article of yours. It is so powerful and yet so beautifully, delicately written.

It is such an interesting problem, how to express ourselves when we're fishing for words.

Particularly when we have the dreaded "brain fog". Some days I am lucky to remember that I am Emma, an artist, a person. My thoughts are fragmented; punctuated by the rude and unwanted intrusion of pain.

Physical pain, emotional pain, I guess it all shackles us.

I'm just lucky that I can paint. You're just lucky that you can write your way through it.

Remaining coherent while your spirit rattles it's cage is a hard thing to do.

Thankyou, and top work, I think you're bloody awesome ;)

Renee said...

Em, your comment could be a post on its own. It is so descriptive and can be clung to for so many people. Me included.

Thank you for more descriptive words for me. I especially love the rattling of the cage. I also don't know if people know this brain fog is a real thing. I have chemo brain, one of my daughters has gone through a lupus fog and you suffer with the same brain fog.

From one lion tamer to another: Be good to yourself. xoxoxo