I have actually been writing a lot lately. Out of my fingertips have been pouring my darkest thoughts about cancer, things I just can’t bring myself to inflict on my readers without the context of a dozen “happy” posts on either side. You will have to wait until my book gets published to read them. Unless some of them come out here.
It turns out that while I have been thinking and writing these dark words, someone else was thinking them too and wrote a wonderful piece for Gawker putting almost everything I have been thinking and feeling into words.
You see, it is almost 2014, and almost nothing has changed since this summer, since this spring, since that day in February when I had the surgery that set everything in motion that has colored these past almost 11 months. Yes, I got somewhat better, I got somewhat worse, I got better, I got worse, I got a little better. I am still one tube down (my PICC line), and waiting a very, very long time to get my other one (my lung catheter) out. But when I complain to my doctor about my persistent nausea, he says to me, “Your body is still spending a lot of energy fighting cancer and healing. You need to rest.”
I say, “I have been resting for 11 months and I’m tired of it.” I ask him if he thinks I will ever feel a hundred percent better and he says yes. “You need to give PRRT more of a chance to work. It might take many more months.” When I try to walk up the stairs to my apartment, still, I wonder if I will ever walk up stairs and not feel like an old lady again. What is it like to feel young?
Do you see what happened two paragraphs ago? I started writing about how awful I have felt since February and I ended up cushioning it with “getting better” and getting a tube taken out. I did that because everyone tells me to be positive all the time and that’s what you do when you are in a shitty situation and you try to be positive about it. That’s where all of my “i am a liver” stuff comes from, that’s why when I write something depressing I almost always try to write something I’m thankful for with it. I’m thankful for a lot–I expect I will be reflecting on that more in the coming week.
It is true that it is a more pleasant for myself and those around me to feel positive, to have a good attitude. I can do that. I do do that most of the time, without thinking about it, without forcing myself to. I don’t feel like doing that right now. There should be a place and a time for the negative feelings and attitude. They are part of the experience, and they are impossible to push away completely.
The truth is, I don’t believe that thinking positively will in any way help me get better. I don’t believe it’s as simple as that. What does positive thinking even mean? Is it visualizing positive outcomes all the time and ignoring everything else? That doesn’t sound healthy to me. It’s impossible to be positive all the time, and faced with a terminal illness on top of feeling shitty all the time and having nothing productive to do with one’s day, it’s hard to be positive at all.
This is clearly not the typical cancer patient (or cancer liver) rhetoric. Cancer patients ignore all these things and run marathons, they change their unhealthy eating habits, they triumphantly return to life from treatment and run for mayor. I have so many friends who have done amazing things during and after their cancer treatment and sometimes I wonder why I can’t be more like them. But maybe from the outside I look like them. I got my master’s degree while I had cancer. I write a blog. But I also sit on the couch all day and feel sorry for myself.
In the eloquent words of Lauren Sczudlo on Gawker, “Cancer patients are expected to be poster children of a movement, meant to reassure the masses that this plague, and even imminent death, can be overcome with positive affirmations and attitude adjustments. We are a society that believes in control, to the point of delusion. We are a nation founded on the idea that any obstacles can be surmounted and dreams reached through hard work and self-control.” She then admits, “I am the unpleasant face of cancer. I am not accepting pain and loss gracefully. I am a disappointment.”
I feel like this too. I cushion all my negativity with positivity. I am afraid to post my darkest words because then everyone will know that I’m not brave and I’m not dealing with this disease in any special or inspirational way. I am negative just like everyone else and I think this whole situation sucks. Screw the silver linings I have found. I would trade my writing voice and my wonderful cancer friends and my new, more mature and relaxed, perspective on the world for not being diagnosed three years ago. I think.
“Many people want to believe that cancer can be overcome with enough willpower and exuberant positive affirmations,” Sczudlo says. “The notion that we can control cancer by dieting—cutting gluten, dairy, GMOs, and alcohol from our diets or binging on kale juice, green tea, and soy—has trickled into Facebook feeds and taken over targeted ad space. We feel more in control of our lives if we believe sick people got that way by making bad choices. This hopeful but woefully misguided belief that if the cancer patient eats like a Paleolithic person or ignores her fears, she will ‘beat the odds,’ denies patients the freedom to mourn the loss of her old self—because cancer almost always kills a more fearless version of ourselves.”