Filling the Uncomfortable Space - June 14, 2009
On April 24th, 2009 I was admitted to Emergency at Foothills Hospital in Calgary presenting severe headaches and vomiting. That evening doctors discovered a brain tumour which led to brain surgery on May 1st. One week later, my doctors told me that I have a malignant “incurable” brain tumour (Glioblastoma Multiform – GBM). On May 7th, 2009 and at the age of 32, I started my journey as a cancer survivor.
The idea to blog my journey was imagined on May 1st, only a couple of hours after the surgery to remove a close to 7 tumour was complete. Surgery had successfully removed the majority of this mass and the only feedback from the neurosurgeon was the following “results”:
“We removed quite a bit of stuff, and consequently you do have quite a bit of extra space in there (pointing to the front side of my right forehead, where the tumour was). Your brain will need time to heal, bounce back and fill the space. The brain does heal very quickly but you may feel a little swooshy in there while the space refills.”
My partner, Jared, told me that I needed to get a hobby to fill the swooshy space. My brother, Cam, told me to fill that space with a blog.
My Blog is Conceived
I had always wanted to start a blog but struggled to find something to say. But I have always written and even though I have never shared any publically, I do feel I write well. I keep several different journals that hold different ideas, different themes, and different points of view. I don’t write every day but I do write often. The writing typically recounts parts of my day and it helps me work through specific personal problems. There are few entries that I felt were significant enough to inspire others and consequently, the entries are private, for my eyes, thoughts, reflection, and action only.
Since my diagnosis, things are different. My journal entries are more significant. My friends and family are being inspired to do things because of my journey. In my journals, I often wrote about wanting to motivate people in this way. I started to see that I could take this personal tragedy of an incurable cancer diagnosis, and turn it into an opportunity to accomplish my goal of inspiring and motivating others to live their best lives.
With my brother's encouragement, I started writing down my cancer stories outside of my journal. The main goal was to chronicle my survivor story and watch how I changed as I worked through the process of coming to terms with my diagnosis. But rather than write the stories in a private way, I adopted a point of view that would allow me to share these stories should I feel comfortable. I found the writing process cathartic as it led me to reflect on my journey, examine the process of coming to terms with my diagnosis, to understand what I have learned, and it helped to provide clarity not only on what step to take next but also it provided clarity on what I really valued most.
It also allowed me to respond to moments, events, and feelings in a completely genuine way. Writing is an independent and solitary activity, at least for me. When I write, I am not concerned about holding back emotion to protect the person with whom I share my story. When I write, I write what I think and I don’t worry about whether it’s the right thing to share. When I write, I can just react and let my words release what I am feeling. I can be completely candid in my expression and as such I see more clearly what I need to take my next step. As a result of this private release of raw emotion, I have discovered that when I write, I am my most authentic. And I know only when I am my most authentic, I am my strongest.
But I still struggled with publishing these important stories. Although significant and authentic to me, how would they be important to others? What would I say? Why are these stories relevant? Why would people read? Why would people care? I found the answers to “Why Blog” in the mountains on the May Long Weekend. Here is the story.
On the May 2009 long weekend, Jared and I went camping. We typically meet our friends Amy and Trevor every May Long Weekend at their trailer in some beautiful oasis in southern Alberta. This year it was Waterton Park in the southwest corner of Alberta. I had never been to Waterton and I always have a great time at Amy and Trevor’s trailer, playing with dogs Molson and Bailey, meeting new people, hiking, and exploring the mountains. I had been excited about this trip for weeks, as it had been booked prior to learning that I had a brain tumour. As the weekend approached even though only a couple of weeks since surgery and diagnosis, I felt well, so Jared and I decided that a weekend away was just what we both needed.
On camping weekends, Amy and Trevor’s trailer is open to anyone who can come. Most of the people coming that May Long weekend was from Taber and part of Trevor’s family. Because we have camped with Amy and Trevor before, some of these people were familiar, if only through stories shared by Amy and Trevor, but many we met for the first time on May 16.
One challenge I experience since diagnosis is seeing or meeting people for “the first time.” There is always the elephant in the room of “What do you know about my story?” My story is long and even the public information can seem “private” depending on whom you know and where you look on Facebook. So when I arrived for camping I didn’t know what people knew about my diagnosis, or even if they knew I had been in the hospital. Quite frankly, I hoped that they didn’t know much as I was craving a change of subject. At a minimum, I hoped my cancer might go unnoticed.
A couple that we had met at previous trailer weekends, Chelsea and Rob, arrived at the trailer a few hours after we did. They are a really sweet couple, who although we don’t know well, we always enjoy spending time with them at Amy and Trevor’s. After lunch, as we were cleaning up Chelsea came up to me and said, genuinely
“Alyson I just wanted to let you know that I have heard what has happened to you. I am really sorry to hear about your news.”
She then struggled to find the right words to say next and all she could say was, “I don’t know what to else say”
She felt uncomfortable and for the first time, I also felt awkward about how to respond to her genuine concern and sadness for me. I responded in my natural way, which is with humour, and used my Hallmark Card analogy, saying:
“What can you say? This is why there are no greeting cards that say – ‘So I hear you have a Malignant Brain Tumour’ – What does Hallmark put in the inside of the card– it’s too complicated. Would never sell.” I forced a smile and we both nervously laughed.
Unfortunately, my attempt at tumour humour did not clear the uncomfortable space around us. But Trevor did. He said boldly “I am going to make wrapping paper that says Happy F@$%ing Whatever – for occasions like this.” We all laughed and joked about creating a Hallmark Type Store filled with inappropriate items that you could give people when they got news like mine.
Chelsea’s loss for the right words to say wasn’t new for me nor was it a unique reaction. Finding out that someone you know and care about has an incurable form of cancer, seriously, what can you say? What words would fill a space that huge with the support you wish to extend? Although I had been in that uncomfortable space several times over the past few days, I was surprised that it was with an acquaintance, Chelsea, where for the first time I felt I couldn’t resolve the awkwardness. I needed to understand the significance of this “irresolvable” instance as part of my process.
I reflected and I wrote about this moment to find a clear way to resolve it. I feel the moment was uncomfortable and irresolvable for me because there was too much to share with Chelsea: too many significant stories, too many relevant moments that would have put into context the journey I was on and helped to move us from a space of uneasiness to a space of strength. I realized that in fact, it wasn’t Chelsea who didn’t know what to say. It was actually me that couldn’t find the best way to articulate why everything was going to be alright. It was I who was at the loss for words because I had too much to share and no way to share it in a positive way that would have relieved the uncomfortable weight of my diagnosis at that particular moment.
This experience helped to reveal the purpose of my blog which is to fill the uncomfortable space cancer has created with strength and positivity.
Specifically, the purpose is to fill the uncomfortable space with the significant stories that
Illustrate my process of becoming a cancer survivor
Inspires strength to support my survivor (survival) story
Involves people actively in my journey and
Ignites others to take action, accountability, and invite me into their own journeys whatever journey that may be
And so it begins, my blog is launched with this first official post. A series of stories will soon follow where I will introduce you to my significant moments. You will meet my loved ones, you will see me at my best, and see some of my worst. I will be honest and authentic as it is all I can be when I write. I invite you to be the same. This space is ours. Although I may choose the discussion topics, I invite you to join the conversation and help fill this uncomfortable space with strength and hope by sharing your reactions, ideas, resources, talents, and time. This gift of support through active participation in my stories is the best gift I could ever hope to receive.
