Tomorrow is my birthday, which means I’ve survived a year since being diagnosed. Despite the best efforts of Trump and his cult, COVID-19 and pandemic-deniers and anti-maskers, and, oh yeah!, cancer, I’m alive. For now. Yesterday, I finally had the shot of whiskey I was going to celebrate remission with, since remission seems a fairytale forever on the horizon. I poured one out for those whose death from cancer has impacted me and/or those around me: Neil, Coco, Qinni, Tom, Alan, Chadwick…a list I keep adding names to.
And I have some real talk to lay down. I don’t think people talk enough about the dark side of surviving cancer. So many talk about personal bravery and exceptional strangers coming through in a pinch or a great doctor making the right call, but people are less willing to share the hard conversations, the fights, the people who try to use your disease for their benefit, the people who hate you because you got sick, and the people who bail.
When I was first diagnosed, I felt a strong outpouring of support. People popped into my life that had been absent for years, through their fault or my own. But so many people don’t understand what real support is, and as what’s required to support becomes inconvenient, those people often vanish. Every once in a while, the cancer center counselor checks in on me during treatment to make sure I don’t need anything I’ve perhaps been too afraid to or didn’t know to ask for. During radiation therapy, he asked me if my support system is still there. I can’t tell you how depressing it is to learn that many people lose their support systems along the way, even when that support system includes family, spouses, and friends-for-years.
I mean, I get it. People have this assumption, as I did, that there’s some kind of end to cancer. They don’t realize that cancer and what it takes can last years, remissions come and go, sometimes remission never comes but death isn’t quick to follow, and the side effects of treatment make ongoing support in big or small ways a necessity. No one signs up for living with the darkness that is cancer for the rest of their or their loved one’s life. People get tired. But so do patients, and we can’t run away when things get tough. We’re literally trapped in a cage with the darkness that’s trying to kill us.
I can’t help that my cancer, my treatment, and the side effects of both make me an inconvenience at times. Ok, most of the time. So surviving things like cancer means surviving the people who give up and leave, the people who lash out and don’t want to listen anymore to the hard or dark parts, and the people who don’t want to be inconvenienced by my disease. One thing cancer and other diseases do, pandemic included, is show people’s true colors, even if I don’t want to see them. If you get in the way of people and their pleasure, you’ll quickly learn your true worth in their eyes, and that can be devastating, especially when you are not worth enough for a person to even wear a mask, or forego dinner in a restaurant, or stay home instead of traveling to a family gathering for the holidays.
When I tell people how their behavior impacts people like me, I become the enemy. Apparently advocating for my own survival is not logical or practical or even necessary. Instead, it’s overbearing, preachy, self righteous. It makes me unlikeable. I’m the thorn, the squeaky wheel, the Lego in the middle of the carpet in the dark just waiting for the tender foot. I often feel like I’m given this ultimatum: die quietly and politely and be remembered fondly or live loudly and assertively and be remembered with resentment and dislike.
What no one told me when I started my “cancer journey” is how common it is for people to dislike you because of your disease. My chronic illness friends know this all too well, I’m sure, and I’ve had several moments of checking my own privilege these last few years. This topic is hard to talk about but also hard for able-bodied people to understand or even listen to. When you are a constant reminder of mortality to people who want to believe young people like them don’t get cancer, that creates a lot of resentment on their part and a lot of tension between you. People come to hate you or dislike you or avoid you because they feel you’re stealing their spotlight or that they can’t complain about the things going on in their lives that may seem less serious. They get angry at you because they feel bad about themselves and their behavior whenever they’re around you. They don’t want to constantly be reminded of sickness, sickness that medicine often fails against. Cancer makes able-bodied people uncomfortable, and they think that discomfort is the patient’s fault, not their own.
I haven’t lost my compassion. I get where they’re coming from. After all, I was once able-bodied. But too many people can’t empathize with others unless they go through what that person is experiencing, and I don’t have the time or energy to hold their hand while they come to terms with how my nightmare impacts their life. I’ve spent my entire life sacrificing my own health for others, protecting the feelings of others at the expense of my own, and not rocking the boat and creating discomfort for those around me. I have cancer. We’re in a pandemic. It’s time to rock the fucking boat. It’s time to advocate for myself. So when the neighbor down the street burns a huge pile of leaves in city limits and fills my neighborhood and house with toxic (to me) smoke, I will complain to the fire department once again, and write another letter to the mayor, and write the Facebook post that people think make me whatever the non-binary version of a Karen is. Because I’m fighting for my life here.
I’ve lost my filter because my filter was killing me. So I will tell others when and how their behavior harms me. I will let the air out of their balloon every time they hold up a centrist politician like a savior or god or sign that better days are on the way. I will remind them of reality whenever they run into that land of fantasy I don’t have access to because cancer stole my key. I don’t want to waste the treatment I’ve survived, the money that cost and continues to. Throwing away all this hard work is an insult to every person cancer has killed. I owe myself and them more. It’s hard being abandoned. It’s hard losing respect for someone because of actions you can’t help but call selfish. I want to be liked, just like anybody else, but I also want to live. Sometimes those two things are opposed to each other. I value myself enough to choose me when others refuse to or at least that’s what I’m working toward.
Right now, people are traveling for the holidays, despite the CDC asking them not to. And boi, do they fucking hate me for frowning upon that. People excuse taking risks by bringing up mental health and pandemic fatigue. I want to say, oh I know, I’ve been in ISOLATION since March, unable to even go to the store because I’m in the high-risk category. I would love to see my mom too, but she’s also high-risk. I’d love to travel to places I’ve never been or revisit places I love, especially because I don’t know how much time I have left to do those things. But I will not throw away the suffering I’ve passed through to survive this far. Reminding people of their privilege, especially when they expected pity, usually triggers their hostility. People keep posting about the importance of not judging those who are choosing to travel. They’re going to social media for empathy and permission and forgiveness for these choices that further endanger people like me. And if I’m anything but silent, permissive, forgiving, or empathetic, I’m the bad guy.
Ok then, I’m the bad buy. But I want more than one more Thanksgiving and one more Christmas for myself and my loved ones. I want to survive cancer. I want to survive this pandemic. I want to survive you.