In the autumn of 2019, during six weeks of radiation treatments while Henry and I stayed at the John Zay guest house near Penrose Hospital in Colorado Springs, I spent a lot of time writing and making small paintings, and I joined a Facebook support group for people diagnosed with glioblastoma called something like “from survivors to thrivers.” Why not? I needed support and information, and I thought some of my writings and artwork might find an appreciative and understanding audience.
This proved true for several pieces of writing and art. I think I got the most response from the poem about the cancer phone tree. Many people resonated because they had had the same maddeningly frustrating experiences. One person thanked me because they really, really needed to laugh that day.
To join the group I had to agree to certain rules; the only one I remember was to not refer to people with glioblastoma as victims. That was fine with me. But there must’ve been an unspoken rule about not expressing anger that I didn’t catch. I noticed that the poems which had an angry charge to them, such as “what I don’t need” didn’t get past the moderators and weren’t posted. I challenged the moderators and asked point blank if they were censoring me. Their response was to not to allow any more of my posts.
Okay fine, I grumbled, except that 19 months later I realize that getting kicked off that Facebook support group is not fine and I’m still mad about it. Why was my angry poem censored? It seems common sense that anger is a predictable and normal reaction to cancer, especially after getting a devastating diagnosis like glioblastoma. What kind of support group would not allow members to express anger or discuss it among ourselves? Were we expected to repress it or hide it away? If it was okay to feel sad or scared, why not mad?
As I think about it now, to repress justifiable anger sounds like a demand to adjust my emotional barometer so other people aren’t made to feel uncomfortable. It starts to sound like what makes any woman crazy, as when someone says “don’t feel what you’re feeling.” It feels like gaslighting. At the very least, it sounds like a request to skip an important step towards acceptance, as Elizabeth Kubler Ross explained so clearly.
Yes I feel anger. Yes I grieve. Yes I sit every day at the bargaining table. And yes, some days I feel a deep shade of blue. How could I not? I am nowhere near to being done with living, making art, breathing, teaching, writing, and loving Henry and my family and my friends and my horse.
The only step I have skipped is denial, unless you count as the denial phase my many years of being uninsured and a hospital/doctor-phobe. But once the seizures happened and the diagnosis was delivered, there was no denying my new reality.
I reserve the right to feel anger so I can also feel joy. With Henry’s help, I laugh almost every day at the drama of it all as we scurry and scrimmage and then seek refuge in our warring anthills. I want to feel the full catastrophe.
When I am graced with a moment of accepting death as my constant companion, I can see how ridiculous and pointless much of my behavior is… Like holding onto my anger at being censored by a Facebook group!