A year and a month and three days. On March 26th, 2013, my life began its swan dive so rapidly and unexpectedly that I lost the sensation of standing still. I’ve often described that being stage iv is like being Alice, down the rabbit hole, only the objects and people that populate your life and hover around you while you fall pass too quickly to even register. When asked if I’m ever afraid, I say that “sometimes, if I think about it too closely, it feels like I’m falling downhill, toward a cliff, too fast and too out of control to stop.” Falling is such a common metaphor for crisis or disaster that it seems cliche to use at times, but I’ve yet to find a better explanation for the nervous and airy sensation that wraps itself around my chest when it dawns on me what’s really going on.
A year a month and three days. A lot of time for those realizations.
I don’t know if right now is what slowing down feels like, but I realized, in those first few days past a year, that something had changed. Kate and I talked about whether making it this far was losing a year or gaining a year. I think it’s gaining a year. From where I stand now, I’m healthy, I have my energy and focus back after whole brain radiation, and I feel more grounded. But that ground is still constantly moving and shifting (healthy, I guess, should be in quotation marks, but that’s a discussion for another day), trying to trick me into relaxing and taking a break while it continues to shake. I stay on my feet. I think, at least, I might be running now.
I wouldn’t say I’m proud of my disease but it’s carved away a lot excess fear, self doubt, and anxiety. I said to Kai recently that I have an absurd amount of self confidence, and I do. In the first few months following my diagnosis, I realized that I had to believe in my own ability to weather this storm. Others could believe in me too, but if I didn’t invest in my own confidence it wouldn’t matter if the entire world were on my side. If I didn’t push myself to rescue the artifacts of my life, reach out and grab them from the walls as I fell past, then I would be left without a life, without a sense of self or purpose. I would have finished the job that cancer started — stealing me away.
I’m in academia, and academics have a tendency to position themselves against popular opinion and popular culture — and very often for good reason. So I often find myself surrounded by a wealth of literature that rages against the blinding effects of the pink ribbon and optimistic cancer/survivor narratives that obscure the messier, more depressing, more humbling experiences of late stage, terminal disease. I also find myself, in the midst of these voices, struggling for air. Part of me feels as if I must be missing something — that my proclivity for the popular means that I’m somehow less insightful, my thinking less nuanced, my conclusions less informed and intellectual — but the other part of me wants to scream “Shut up, I GET IT.”
I GET IT. I’ve had several major organs fail. I’ve been so sick from treatment that I had to sleep in the bathroom, many nights in a row. I’ve lost so much weight that my bones told their own story of starvation when I wore a tee shirt or a dress. I’ve had 8 surgeries in one year and come home with open wounds and tubes draining the excess liquid from my incisions. I’ve done 6 straight months of a chemo famous for pain so piercing you don’t sleep at night. I’ve lost my hair twice in the middle of New England winters and discovered a newfound respect for those who choose to go bald and woven woolen hats. I’ve faced, head on with eyes open, my own mortality so many times I’m no longer shocked by its existence.
So I get it. I know how isolating illness is; how the constant bouts of feeling sick, and tired, and in pain can seem endless and punishing. I know what’s coming for me on the other end of this. I know how it feels to watch the rest of the world move according to the laws of physics, and gravity, and motion while you sit, locked in a prison but forced to interact with those outside. And sometimes those outside don’t understand — they mean well but tell you “you’ll beat this” or “you’re doing great” when all you really need is a sympathetic ear, silence, and a hug. I think this is where a lot of the anti-pink ribbon voices emerge. They’re an appeal for emotional validation or, if I’m being more honest, an appeal to those who dismiss your reality to kindly shut the fuck up.
But there are also those who listen, who don’t tell you you’re going to be fine, who stand on the sidelines with you, point at your mortality and say “yep, there it is, the asshole.” When I feel alone and sick and depressed and anxious it’s them I surround myself with. More importantly, it’s them to whom I owe my life — it’s them to whom I owe the willingness and energy to keep thinking, keep moving, keep a smile on my face. Most importantly, it’s for them and because of them that I smile. So while I get it — cancer treatment and the side effects of the disease are mind numbing, painful, frightening — I don’t buy into it. If you’re stage iv, there will come a moment when cancer takes everything; I remember Charlene looking at me with a fear in her eyes that I don’t know we have the word for in English, and saying: “I don’t want to die from cancer. I would rather die from anything else, but I don’t want to die from cancer.” I get that fear. Cancer is not a noble death. It is an ugly, often prolonged, painful death. It is a death I do not want and yet, eventually, I must take.
So, in the meantime, I’m running. Sometime in the last year, month, and three days I found my legs again. Periodically I think I lose them, but I’m lucky enough to be surrounded by people who are willing to sidle up next to me, point, and quietly say, “Right there, Kiara. They’re under you, moving just like normal.”
And they’re right, in more ways than they know. A lot of the time, I am moving just like normal. I’m still working toward finishing my dissertation, still horseback riding and working at my barn, still rock climbing, still writing in my spare time. All of these activities are me — they confirm my existence and the person I am in ways that cancer can’t. Even in their truncated forms, when I’m too sick or too tired to invest myself as much as I want to, these artifacts give me energy and purpose — a life outside of cancer. Even when it’s difficult. Especially when it’s difficult. I think it’s the reason that one year, one month, and three days after a terminal diagnosis, I’m doing pretty good.
I guess that’s my version of the cancer narrative. More pink ribbon than not, more optimistic and forward moving than not. If you are stuck with this disease, count your blessings and actively pursue them. Don’t let cancer sideline your life. As I’ve written in another forum, cancer does plenty of its own ass kicking, so you better do your own as well. Do it because the alternative is far more scary and far more permanent and far more overwhelming. Do it for yourself, but also do it for the women and men who can’t, whose diseases took their lives. Do it because as humans, we have the ability to be patient, and confident, and strong — and do it because one day, you’ll look down, and see your legs. They were always there anyway.
[For Ches, who we will always love, and always miss.]