ALMOST BUT NOT EXACTLY
Image: Rachel Idzecda
“Illness is the night-side of life, a more onerous citizenship. Everyone who is born holds dual citizenship, in the kingdom of the well and in the kingdom of the sick. Although we all prefer to use only the good passport, sooner or later each of us is obliged, at least for a spell, to identify ourselves as citizens of that other place.”
For most, this moment comes at a time when we least expect it. And it is never, ever fair. But sometimes, it’s even less fair than one would expect. This blog post, unlike my previous ones, is quite different. It is not intended to evoke sadness and devastation, but rather, to demonstrate that when faced with a serious illness, one cannot always be both an advocate and a patient. However, to also say that there is still a lot of fight left out there and that is most certainly something to hold onto.
What would you do if you were told (almost but not exactly) how long you had left to live?
Would you travel the world? Get that car you always admired from afar but never cared enough about to buy? Would you spend the rest of your life lying on a beach, reading all of the classic novels you never had time to read before? Quit your job? Find love and move to another country for it? Would you even know where to begin?
That’s probably how this should have started.
It’s important, for starters, to acknowledge that the concept of dying is heavily romanticised. That quitting your job, selling everything you own and travelling the world is something (or at least a variation of this) that many of us probably want to do, or at least have thought about at some point in our lives.
When we think about death, we think about the great eulogies that will be delivered at our funeral, imagine our nearest, dearest and dozens of others who aren’t really that important shrouded in black and dabbing their eyes at exactly the right moment when someone says, “She was a wonderful woman and will be missed dearly by all those who knew her,” or something along those lines. We imagine that time will slow down and the world will get to experience the full weight of its loss. Of us as living, breathing, loving, hateful, angry, lazy, whining, moaning, groaning, self-centered individuals.
But it won’t be that way. And the process leading up to it cannot be ignored. The mundaneness and dullness, the admin of it all. Death is not romantic, probably won’t turn out to be all that dramatic and most certainly will not be beautiful. Well, at least none of that makes sense when you’re told (almost but not exactly) how much time you have left to live.I’d already made my list shortly after I first got sick. And many of the things that were on it then are still on it now. But I also know that some of them will never happen, and that is absolutely terrifying. Quite frankly, it sucks. It’s probably the hardest thing that I’ve ever had to consider.
So instead of telling you that I plan on selling my car, telling my bosses to suck it (they would probably laugh and tag along for the adventure) and getting myself into an exorbitant amount of debt by travelling the world and buying a bunch of things I don’t need, I’ll tell you the truth. I’ll tell you that it took me over a month to cry about it. That when I do sleep, it’s for only a few hours at a time and is usually filled with fitful dreams. That I still wake up to clumps of hair on my pillow, despite not having had chemotherapy for a few months now. That I feel like my lungs are on fire when I climb a flight of stairs. That talking about it makes me want to punch a wall. And of course, that a broken hand would feel like nothing in comparison to the everlasting dull ache that’s settled itself into my bones.
That hiking through the Eastern Cape was more difficult than chemotherapy, endless doctors appointments, blood tests, needles and bone marrow biopsies. That the idea of not making it through a short four days out there was just as psychologically intense and challenging as being diagnosed with cancer at 25. That I spend countless hours mourning the lost opportunity of lifelong love, children and an established career. That backing down from a challenge – and, more often than not, even the littlest things are challenges – leads to hours of tears, anguish and self-disappointment. That I cringe every time I look in the mirror because all I see is “cancer”. That I count the bruises every morning as a way of maintaining some semblance of control over my body. And that spending time with the people (and my puppy, Ruby) is difficult because I’m so afraid of hurting them.
Cancer is not a single disease, but many diseases. I’m no expert on the history of this approximately 4,0000-year-old disease but that the little bit of research I have done leads me to understand that the reason it’s called “cancer” is because these diseases share a fundamental feature, the abnormal growth of cells. There is of course the history and political themes (such as the vast inaccessibility of life-saving treatments to many around the world, all because of greed) that justify a unifying narrative.
But again, I am no expert and the experiences I speak of are solely my own. And what I do know is that all those who have on some level experienced what I have (and those dear to them) will understand not only the very personal nature of the disease but also the anguish and devastation it leaves in its wake.And although I had originally intended on excluding some sort of “positive” spin on this post (as I said, it is somewhat different to my previous ones) I can’t help but think of how much advocacy exists within the cancer community today. Just today, some of my comrades picketed outside pharmaceutical company Roche to highlight the excessive price of a life-saving breast cancer medicine. My journey may be coming to an end sooner than I’d intended but I find great comfort in the fact that there are others whose experiences won’t be cut short because of actions such as this. And you should too.
“Its palliation is a daily task, its cure a fervent hope.”