Young people don’t get sick. We are young and virile, we are strong and successful, we have the world at our mercy, we have our whole lives ahead of us. Except when we aren’t/don’t. At the start of a life stage that *should* be dotted with what certain scholars would call “appropriate developmental tasks”, such as building a family, setting the foundation for a life-long career in whatever field I feel more successful in, buying and establishing a home, etc. The truth is, I’m not sure if I was even headed in that direction in the first place- I certainly had been exploring various professional fields in the years post-University and pre-cancer diagnosis, and certainly had explored my fair share of potential life partners (and some, not-so potential). I also had rejected the notion of possessing property, my minimalist tendencies would not allow for such extravagance. I was in the midst of a personal journey of self-discovery, having had recently lived for years in new and exotic locations (and some, not-so exotic), absorbing new information, new skills, and new stories, along the way, and I was nowhere near slowing down.
But then (there’s always a but, isn’t there?), of course, cancer came along.
Not just any cancer. The mother of all cancers. The wonderfully fantastically-named Glioblastoma Multiforme introduced itself in the right frontal lobe of my brain at the age of 26 years, and grew itself to the size of a baseball with little tendrils snaking about the inside of my once-pristine cranium. Words flew by (some said, some read): Grade IV; aggressive; deadly; median survival of 16 months; surgery; advanced care planning; end-of-life; power of attorney; radiotherapy; chemotherapy; clinical trial...
This last one resonated with me the most. Though presented as a “why not?” option from my health care team, since current treatments aren’t effective anyways (these are all considered “palliative” due to the incurable and unstoppable nature of this disease), I took to my search for a clinical trial as a search for hope. And I found it: an experimental device called an Optune (at the time, the Novocure-TTF-100A Device), which saw me carry around a medical device housed in an inconspicuous backpack, with not-so-inconspicuous wires flowing out of it towards a number of disposable arrays of electrodes that would be fastened to my scalp.
When they say that cancer flips your life upside down, the maintenance of this thing flips your life upside down, shakes you up, and then feeds you to an alligator.
I had to wear the device as close to 24 hours a day as possible. I’d have to remove the electrodes every 3 days as the adhesive wears off due to hair growth, reshave my head (eat your heart out, I think is the expression, those who lost hair from chemotherapy) at this time, and re-fasten another set of electrodes. I needed special “Stay-Cool” pillows and needed to keep my head out of direct sunlight, for overheated electrodes cause the device to stop working. Constantly stared at and commented on, I was a sideshow attraction to those who would cross my path. There isn’t much in the way of deflecting conversation when you’re a large bearded 5 foot 11 inch man walking around with a parasol to hide your strange white cap from the sun. Nevertheless, I felt like I was doing something about my situation. I felt in control, when, in fact, the situation was uncontrollable. With lots of love and support from family, I made it work. I had put my life on hold. I stopped. And stopped. And continued to stop. I had to, right? I was dying anyways, right?
But then, strange things happened.
I finished my 6 weeks of radiation therapy. I continued to work as a private school teacher, with the support and flexibility of my colleagues. I finished my full year regiment of chemotherapy treatments. I was alive at year one. I was alive at 16 months. I was alive at two years. I was alive at 2 and a half years. Then, as one does, I discovered myself in India and put in place a contingency plan for the strange occurrence of my continued survival.
2.5 years of living with my incurable cancer, I shed my electrode skin. I stopped all treatments.
French sociologist Claude Dubar saw identity in two parts: a personal identity and an outer/social identity. The personal identity is the identity that we perceive ourselves to have, and the outer identity is the identity that others give us. An outer layer covering an inner core. For Dubar, Shrek would have only been partially correct: we are more like bananas than onions. Though we can have a sense of the nature or the ripeness of a banana from the peel, it can’t give us a perfect picture of what lies beneath. The outer layer informs, but obscures, at the same time.
Thus, our “true selves” are hidden from view, beneath the layer of the outer identity. And sometimes, as it was in my case for a long time, it is all but forgotten. The cancer component of my outer layer was constantly brought up in my life, to the point where I myself came to accept that, yeah, this is who I am now. The new normal is a concept often talked about but is usually presented as a clean slate of your life, forcing you to abandon everything about yourself that came before that crucial cancer-diagnosis moment. It’s often easier to try and create something new rather than running around picking up pieces of your shattered life- whether or not easier is synonymous with better is up for debate, and may be a subject for an article at a different time.
And so we can find ourselves brushing those pieces aside and looking at ourselves in a new light. Unfortunately, this new light is often distorted by our recent trauma. The pervasive image of us as the cancer patient or survivor or fighter, or whatever term you prefer, can linger to the point of becoming a concrete aspect of our identities, especially that our outer social layer presents this aspect to the world during Every.Single.Social.Interaction. And we might come to accept this as the new normal. We become our cancer and accept it.
I certainly forgot about my true and inner self. The immense focus on my outer layer by myself and others brought me to live in existential turbulence as my cancer identity corrupted and ate away at my inner one. And once I lost my visible electrode skin, I found myself lost and floating in the realization that I had forgotten who I truly was. I had lived with my medical device for so long that I came to accept my role as the brain cancer guy. It was strange to suddenly not have strangers staring at me and being asked awkward questions by curious prodders.
For the first little while, I would awkwardly bring up my cancer in inappropriate situations, overly sharing information that others had not asked for. My cancer-social-scripts became so imprinted on me that it took me quite a long time to realize that I did not need them anymore. I could override them and not talk about the more disturbing details of my diagnosis to the barista at my local coffee shop as I waited for my morning latte. I could forego the details about my baseball-sized tumour I had in my right frontal lobe when I began any kind of social interaction with a new person. I was not bound to having to explain why I absolutely needed to sit next to an electrical outlet in any restaurant or meeting space, which was often necessary for my medical device. Once I realized that I no longer needed to talk about my cancer, and that I was free to write new social scripts, I found that I could start poking holes in my outer layer to rediscover what I had neglected for so long beneath.
For those who are coming in for the first time to the visible-cancer world, or even the non-visible-cancer world, do your best to accept as best you can the changes that come with this one-way ticket. Create the scripts you need to create for the outer layer, but please don’t neglect that important inner core of you. That person inside you can be recalled and reinforced by whatever lights a fire in you- it can be the arts, it can be journaling, it can be creating and sharing cute facebook videos… Any type of creation that gives your inner you a voice. And whatever you do, and whatever your situation, try and remember one important thing :
You are not your cancer.
I got a haircut the other day in Montreal near the Jewish General Hospital. I’ve now been living without my electrode-skin almost as long as I’ve been with. The hairdresser asked me “so what’s the story on that craniotomy scar?”
I’m now living off-script, and I couldn’t be happier.
It has now been over six years since my initial diagnosis, and I have no plans of slowing down. I recently completed a Masters of Social Work, with varying degrees of what some scholars would consider as “successful”, became a registered social worker and am working in the not-for-profit field working to better the lives of those who live or have lived with a brain tumour. I have recently become engaged to one of the most wonderful persons I have ever had the privilege of running into in this life. And, weirdly, just bought my first home. I no longer allow life to put me on hold, and a live fully despite the odds.
If you are interested in learning more about Denis’ story, please click the link in our profile to check out his book, “The Impact of a Terminal Cancer Diagnosis on a Young Adult's Identity: An Autoethnographic Essay”, available on Amazon.