Disorientation, explained

Shot with NOMO Toy F.

It has been two years since I was diagnosed with breast cancer and 18 months since my active treatment ended. There is a rare soul out there who dares to ask me about my health now. Before I had cancer, I didn’t understand how much people are really truly terrified of cancer. Want to throw an awkward wrench into any conversation? Utter the word cancer. Cancer, cancer, cancer! People screech to a full stop and there’s a desperate attempt to fall all over themselves to change the subject to anything else.  I’ve learned quickly not to bring it up at all.

After cancer treatment there is no happily every after. No back to normal. No better than ever. This Why the Trauma of Cancer Doesn’t End After Treatment is a refreshingly clear article by Layla Haidrani about life after active cancer treatment ends. It is worth a read for a better understanding of the concept of cancer recovery. This blog post by Molly called I Have Died is stunning and sad in her articulation of what it feels like to be abandoned by friends and family when you have cancer. This collateral damage is real and painful – and it followed Molly right up to her last blog post that she wrote before she died.

My friends who have children with disabilities or my old colleagues who I worked with in the children’s hospital are braver than most. Last week I met a friend for lunch and she opened up by asking: how are you doing mentally and physically? I wanted to give her a Good Friend Medal. She was not afraid to go there, to the Place of Voldemort That Cannot Be Spoken Of.

This is how I explained to her how I was doing. It is as if I got knocked down and I’ve finally gotten back up.  But now I’m awfully confused about everything.

This has taken two full years of hard work to get up, which has included the love of a good man and my three children, loads and loads of private mental health therapy, one cancer retreat, a general avoidance of oncologists and the health system, meditation and daily walks. (I explain my sources of comfort here). I’m still shaky and I fall back down easily. I feel as if my resiliency is very low and almost non-existent. I don’t feel better than ever. I feel fragile and vulnerable most of the time. I’m (maybe foolishly?) searching for a publisher for my book and my fragility makes rejection letters exceedingly painful. I think: I can’t go on. I must go on.  I’m trying to return to the land of the living but I’m finding the land of the living quite bewildering.

I want to talk about this feeling of confusion. I’ve popped back up and I’m looking around at the world, thinking: What The Hell Is Going On? I’ve shifted but the world has soldiered on unchanged. (Well, politically and climate-wise, it has actually gotten worse). I’m at the What The Hell Is Going On stage of healing from cancer.

A kind colleague recommended a book called Disorientation and Moral Life by Ami Harbin. It is a book of feminist philosophy that explains the reason for my confusion. The author talks about the serious shifts in identity that the disorientations of illness can prompt and that being diagnosed with a serious illness can be deeply disorienting.

Finally, someone who has put words around what it feels like to have been diagnosed with cancer. It is as if I was a boxer knocked out cold in a fight and I have finally come to and struggled up to my feet again. I look around the boxing ring at my opponent and the audience and nothing seems as it was before. This is called disorientation. My regular way of being in the world has irrevocably changed.

Ami Harbin does point out positives to disorientation, including an increased sensitivity to others facing their own vulnerabilities. I can feel that. I have many women with a looming breast cancer diagnosis contact me while they are awaiting biopsy results. I am happy to connect with them, even if it is only to say: I know this is hard. (Write to me and I promise to write back). My new theory is that we can change the world with one kindness at a time.  Cancer didn’t give me any gifts but okay maybe this is a gift that comes out of my disorientation.

Cancer causes odd shifts. In some ways, serious illness feels like a personal failure. All the rules I subscribed to (I am in control of my own life, I am a good person, I am a healthy person) were taken from me when I first found a lump in my left breast. Being disorientated means I need to create new rules to make sense of the world.

If you ask me how I’m doing and you sincerely want to know, I will lean on the wisdom from Disorientation and Moral Life and use this quote from philosopher Susan Brison to say:

None of us is supposed to be alive. We are all here by chance and only for a little while. The wonder is that we’ve managed, once again, to winter through and that our hearts, in spite of everything, survive.

Maybe this is called grace? I just don’t know. I have a feeling that my lesson here, at least for today, is to be okay with the not knowing.  And so ends this untidy, disoriented essay.  /Fin

 

 

 

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