Soon, it will be a year since I was diagnosed stage iv.
I think March 28th is the date, but I can’t remember exactly (and I actually prefer it that way). In the last year, life has been a weird combination of fast forward and pause. It’s often been a challenge, both to live every normal day (and live normal every day) with a terminal illness and to manage the darker times when they come around. But it’s not impossible. If anything, the experience has taught me how to weather and navigate almost any storm, or at least be confident in the fact that I can figure the worst ones out.
But the constant barrage of the good, the bad, and the ugly *would* have been impossible were it not for the phenomenal support network around me, comprised of my family and closest friends. Although I often feel alone — I am the only one of my support network who has to actually live with this bullshit growing in my body — I never feel lonely. I’m always, at most, a phone call away from someone I can trust, confide in, cry with — and, most importantly, someone who will bring me back around to laughter.
And that’s something I tell others — those who are diagnosed, my friends and family, really anyone who will listen. When you or someone you love has a serious or long term illness, tell those around you. Though it’s scary to break the news — even sometimes terrifying to say the dreaded words aloud — it’s necessary. The only way you can gather a support network is to ask for that network, put out feelers. And the only way that support network can work is if they know what you’re facing each day. Only once you or someone you’ve set up to act as a proxy have divulged the context and situation you live in, how it affects your everyday life, how it makes you feel and changes the way you act and interact — only then can those around you truly be of help. And the more you let people know what you need and what’s going on, the more ready they can be to offer appropriate and effective help when you need it.
This outlook is easy enough to take with an illness like cancer, especially stage iv. It’s pretty physically demanding and so pretty obvious when you need help — and pretty hard to ignore. In other words, it’s damn near impossible to hide — something I’ve never tried to do and never want to do, ever. And this is actually something I’ve been praised with doing — I’ve been told how reassuring, helpful, and demystifying it is to hear me talk openly (and I am open about every facet of having cancer — ask me anything!) about my illness, how it fits into my life, and what kind of response I need from others at different phases of treatment. The response has been overwhelmingly positive — everyone close to me has stood up and supported me, in part because my transparency gives them encouragement to do so.
But what about those illnesses that are, for the most part, easier to hide or easier to physically deny — illnesses that our culture has taught us to keep secret and be ashamed of? I’m thinking specifically of mental illness. Everything I wrote above about communicating about a disease like cancer I believe is true of mental illness as well, but until I got diagnosed the second time I couldn’t put my finger on how to defend mental illness as something about which we as a society need to be more open, accepting, and understanding.
But living with cancer over the last year it’s dawned on me: no one would expect me to be ashamed or shy about be sick — it’s a disease, something that went wrong in my body that I had no control over. No one would expect me to just ignore it or suck it up on a hard day when I wasn’t feeling well — when getting out of bed felt like a chore. No one would think differently or condescendingly of me or be embarrassed by me if I didn’t do so well in public because I was suffering. Any response other than kindness, caring, and love to any of these — and related — situations would be unacceptable; a negative, unsupportive, or shaming response would be selfish, lacking in compassion, cruel, and unfair.
Now, read the above paragraph, but instead of thinking about how I have cancer, think about the fact that I’m manic depressive (which I am, by the way). Everything still stands true.
We need to stop thinking about mental illness as something that’s “just in your head” — which, admittedly, is hard, because physiologically it originates and occurs in your head. We need to stop thinking about illness of any kind as something that’s “not okay.” Because while it’s horrifying, and destabilizing, and painful, and unrelenting, and often uncontrollable, it is okay; or, in other words, it is human. Mental illness is a disease that needs proper treatment — just like cancer, just like any other illness. It is a disease that requires compassionate care, patience, and understanding. In the many, many forms it takes, it’s demanding and relentless — again, like stage iv cancer — and puts pressure on those who suffer and those who love the sufferer. But I think situations that put pressure on us — no, demand of us — to be more compassionate than everyday life asks, to be more altruistic, to be more selfless, patient, to have wider perspectives and consider things from others’ points of view — situations that demand us to be more human — are ultimately the only ones worth living for.
And something amazing happens when people stop being ashamed of who they are — even and especially when who they are isn’t perfect — and instead start accepting themselves ‘as is’. When people are comfortable in their own skins — as the French say, je suis bien dans ma peau — they start loving themselves and taking care of themselves more effectively. To put it bluntly: they learn that it’s okay to get the help they need. And they learn to ask for it and seek it out. As Kai tells me all the time, when I feel guilty about needing so much when I’m sick, “Everybody needs a little help sometimes.”
So don’t be ashamed. Stand up and ask for help from those you trust, or at least tell them what you’re struggling with so that they can be there for you when it’s hard. If they love you — if they are indeed compassionate, loving, learning human beings — they will rise to the occasion. They will, even in the really rough, uncomfortable, painful, shocking moments, stand at your side and guide you through the darkness. They will accept you and love you and help you — and never turn you away.
I dedicate this entry to Kate, who taught me it was okay; to Kai, who showed me the way; and to Mum — for everything.