Sitting at a birthday luncheon for a friend in London, England, yesterday, I was talking to a woman I had just met and who because of mutual friends had knowledge of the fact that I’d just come through my latest cancer battle. Her very first question to me was, “How is your head?”
She didn’t mean physically, she was in essence asking me the question you so rarely get asked – how was I was doing emotionally. My first reaction was to thank her for her question and tell her that I almost never get asked that. And then I said, “I’m trying to figure out to heal my head. And my spirit and soul. It’s the biggest question I have now; how do we heal those parts of us that don’t show visible scars, that don’t show obviously signs of trauma, that don’t display wounds the way the body does?”
My doctors all warned me as the end of active treatment approached that I was going into one of the toughest times. It was something I already knew.
What I didn’t expect was my frustration and annoyance at myself. After all, I reasoned, this isn’t your first rodeo, you should know how to get through this part. You’ve done it before. And yet, I was instantly lost, depressed and afraid and I had no idea what to do next.
I knew that I was starting from scratch and that nothing that I had done or used before to get me through this time was going to work again. I knew I was going to have to dig deeper and I knew that I was trying to heal more than the latest cancer experience.
For more than 6 years I had been numbing myself. I numbed myself with the first breast cancer diagnosis. I numbed myself when I finally had to face the reality that I was going to have to give up my life in LA. I numbed myself when my heart got painfully broken in a way that I didn’t know it could be broken by someone I trusted more than anyone. I numbed myself through my first 3½ years of being back in Toronto. I numbed myself when I received the new diagnosis and all through the subsequent physical battle. I numbed myself with every curveball that life threw at me. I am an expert at numbing myself.
I worked. All the time. I isolated myself. I put up barriers and I stayed numb.
Most of the time, for people who did not know me well enough, I acted happy enough to not raise alarm bells, while others just retreated, taking my constant rebuttals personally. Who can blame them? Certainly not me.
I wish I could tell you that numbing yourself is hard. The truth is it’s not. I didn’t need drugs or alcohol or any other substances. I learned long ago how to numb myself. It was part of what my body just did naturally to get me through traumatic events that just kept coming.
So here I am. I am on the other side of this last cancer battle, without work to bury myself in and no other distractions to hide behind.
I know that few people understand this. Most think that this should be when I am the happiest. I did it. Again. I slayed the cancer dragon and I came out on top. I should wake up with a smile on my face and a kick in my step. I am, after all, one of the lucky ones. Every one of of the people this disease took down wish they were in my place. I know that I am part of a very fortunate group.
But here’s the thing, the thing so many people on the other side of trauma are afraid to say or to speak of for fear of being seen as ungrateful or melodramatic or self-pitying. So many of us don’t talk about this part of the battle because it seems almost disrespectful to those who didn’t make when really it is just dishonest to not talk about it.
For so long there were not enough cancer survivors living long enough for anyone to become aware of the after treatment challenges. But we are growing in number and this is something that needs to be talked about.
In 2011, the Journal of Clinical Oncology published the results of a study called “Post-traumatic stress symptoms in long-term non-Hodgkin’s lymphoma survivors: does time heal?” They studied a total of 566 individuals with a median of 12.9 years since diagnosis. Their conclusion? More than one-third of long-term NHL survivors experience persisting or worsening PTSD symptoms. Childhood cancer survivors, survivors of aggressive cancers and cancers that require intense treatments where shown to have increased risks of PTSD developing. And recently the official definition of PTSD was changed to include a cancer diagnosis as a causational factor.
What is also being recognized is that while we have decades of research on PTSD, going back to the days of “shell shock” in WWI, cancer presents a variation that complicates existing PTSD treatment. In most cases of PTSD, you can remove the affected from the stressors that brought on the PTSD in the first place; take the soldier out of the battlefield, provide safety to victims of abuse, etc. But the stressors for cancer related PTSD are your body, the treatment and the doctors. Those are things that cannot be removed from someone with cancer’s life. A significant number of survivors will avoid follow up tests and doctors’ appointments because the stress and anxiety are too much to bear which puts them at increased risk of a potential reoccurrence not being caught soon enough to be treated, making the very thing they need to keep surviving, the thing they cannot do. Different treatments and approaches to cancer related PTSD are going to have to be developed that address the fact that our stressors cannot be removed from our lives.
It was validating to ready this study. It was validating to know that I am not alone. With so many illnesses, follow up and rehab programs have been developed. But with cancer there is little. You are just a lucky one and you should be happy to be alive. If only it were that simple. As a friend who has been in remission for more than a decade said to me recently when I sought her out to ask how she had healed, “I’m still working on it. But it’s hard. It’s not like I can go to lunch with my friends and when they ask how I am say, “I’m still kind of dealing with this cancer stuff.” For them it is so over and they have no idea what I am talking about.”
I am happy to be alive. I deeply miss and will always fight for my friends who, for reasons no one can make sense of, did not make it. But I think it also time to let go of the shame about not living up to an unrealistic expectation of survivor joy just because we did not die. To speak this truth out loud does not dishonour those who cancer took away from us. To not speak this truth out loud just means that a good number of survivors will continue to silently suffer and feel isolated, thinking themselves alone with their emotions and feeling ashamed that they aren’t living up to a fairy tale survivor myth.
I am wounded, traumatized, hurt, scared, humiliated, sad, embarrassed, scarred and heart broken. So right now my focus is on one question – how do we heal, really heal, our hearts, our souls, our spirits, our whole selves when they’ve been broken, not just by cancer but by any number of traumatic events that come our way in life?
So I’m on a bit of a quest. It’s not mapped out or formalized. But I am paying attention and I am going to write about if for no other reason than I know I am not alone in trying to find the answer to this question.
What I do know is that nothing in my life is going to change, or work, or be fulfilling until I can not only answer the question to take the actions needed to get me to a more healed state. And as figure out how to heal, I have to stop numbing. I know that numbing is a choice. I’m not alone in having chosen it. There are people who numb their way through their lives or far less dramatic reasons than a cancer diagnosis. I was one of those people. I just don’t want to be one of those people anymore.
Numbing is like being frostbitten. You freeze quickly, lose circulation, and when you finally get to a place where you can warm up, it hurts like hell and takes a lot longer than the initial freezing did. But if you don’t thaw out your frostbitten bits, they have to be amputated. I don’t want to have to lose my heart, my soul, my spirit. I did not fight as hard as I have to get on the other side of all this life crap to just zombie walk my way through the rest of my life.
I want to feel – as bad as it is going to be sometimes. I want to take control of my life and make some different choices, go down some different roads but most of all I want to find the true me, love her, nurture her, and inspire her to start living her life fully and openly, with a confidence that will make numbing unnecessary.
And so I’m trying to live that question right now because living my way to the answer is the only way I’m going to get there.
I started working on this in January but only now feel like I can start to write about it. It’s been an interesting journey so far and I expect that that is going to continue.
So as I work away at this question, I will continue to try to un-thaw. As a child and an avid skier, I was frequently getting frostbite. My mother used to stand at the bottom of the ski hills trying to catch me as I sped by and drag me into the chalet to warm me up. She would haul me into the woman’s bathroom, strip me down and sit me in one of the sinks filled with tepid water as she gently tried to get the blood flowing back to the front of my legs, torso, arms cheeks, fingers and toes. I would sob and sob at the burning prickly pain of feeling returning. But half an hour later I would be back on the hills.
In so many ways, I’m metaphorically back in that bathroom sink, enduring the pain of feeling returning to my body. There has been much sobbing and there is still more to come. And I will figure out my own answer to that question of how to heal. It’s the only way to get back on the slopes where I can be free, alive, and loving what I do and who I am.