Getting a grip: (some) things will be okay
Tig Notaro gave a brilliant performance, years ago, after being diagnosed with breast cancer. The shock and terror were still in her voice, and yet she went on and performed. What made Notaro’s show brilliant, that specific performance, was her truth, her honesty, her absolute inability to pretend that everything was fine.
At one point in the performance, she speaks to an audience member we cannot hear. “Aww,” she says, responding to person’s sympathy. “I’ll be fine.” Then she corrects herself, “Actually, no. You will be fine. I have cancer.”
To listen to the full performance, try this: https://www.youtube.com/watch?v=VHXo3FFsfeU
I was two little years post-first breast cancer diagnosis when I first heard Notaro’s routine on This American Life. I was in my kitchen in Milwaukee. I laughed so hard. I wept. I understood where she was because I had been there, too. She could not tell the “bee joke” that everyone was waiting for, and when she finally does the “bee joke” she does so with the kind of enthusiasm we adults can sometimes muster in order to “perform” — even after hearing something as awful as “you have cancer.”
Yesterday, I went to work. I hadn’t slept much Tuesday night, but I rallied because I really like my new school, my new students, my new colleagues. I rallied because I truly believe in the work we are all doing together.
The kids, as always, made me forget myself for a while. In the morning, a child insisted I try a “Ghost Pepper” chip to test my claim, the previous day, that I could “handle really spicy food.” And I did. I chewed under my mask, thoughtfully, while the children watched for my reaction then said. “Nope. Not spicy enough,” and walked away with their laughter at my back.
And yes, I know it might not be terribly wise to take a chip from a child’s hand during a pandemic, but when a sweet faced 6th grader asks if you’ll try a chip, just to amuse him, I can’t help it: I comply.
Later in the day, a kid needed me for reasons unrelated to school problems. Later in the day, a kid needed me to help them through a tough moment in life. And in that moment, I was able to step out of my fear as though it were a suit I wore, go to the child and provide comfort. The kind of comfort I would have wanted were I in the child’s shoes. My mind and heart were clear and open, and when I am in that space God or the Universe or my “higher power” or my open eyes and ears find the places where I can be present and compassionate and tender.
At the end of the day, as I was jogging up the stairs, my boss called out to me, told me that he’d noticed what I’d done for the child, told me I had helped the child, and when I replied, “The child helped me, too,” he nodded an I know.
Today I will meet my new oncologist.
I have profound PTSD around medical settings.
I come by this honestly. Some real bad shit went down when I was a girl (dealing with it now, finally — should of dealt with it sooner, but here we fucking are), some real bad shit went down up on the hill when the pandemic first hit and for months afterward. Even going to the dentist terrifies me, and this has been my lot since I was first “released” from a botched surgery, from the care of adults who damn near killed me, “back into the wild” circa 1990. I didn’t know it then, but apparently that whole “almost died my freshman year in high school/spent several months in the hospital” episode really fucked me up. Who woulda thunk it?
I was thirteen. I was as old as my oldest middle school students.
And after the horrible things happened, I was sent back into the wild
to figure shit out on my own. Or so it felt. That’s what really matters in childhood, I think, how it felt. I don’t remember exact words — but for a few here and there — but I remember feeling small and frightened and utterly powerless because I was.
I am not thirteen anymore.
On the contrary, I am forty-five. When I first tumbled into this debacle (metastatic breast cancer), I was forty-three. I was not clear in my heart,
my mind, my body, or soul. I was consumed with fear, looking for a guide, looking for someone, anyone, to help me navigate this space of being forty-three, stuck with metastatic breast cancer in a global pandemic while America, so it sometimes feels, collapses and burns all around me, around us.
I am not thirteen.
I am not forty-three.
I am not that person I used to be: the person who just “takes it” whatever that “it” is going to be. Keep your fucking “its.” Put them on someone else, because I am donating all my “its” to fucking charity now. They don’t serve me.
I am a stronger woman than I have ever been before because I know something I didn’t know before: this is my fucking life. Just as I do with my children in the classroom, I must show the adults I interact with (whether by choice or force) how to treat me, my body, my heart. I have to teach others because past experience has shown that while my “kindness” and “softness” might be the very thing that makes me an excellent educator (and I can own this now: I am damn good at working with kids) also make me an utter doormat where other matters outside of the classroom are concerned.
Today I meet my new oncologist. Today, my oncologist meets me. A woman who, according to my last oncologist, suffers from the following life-threatening conditions in this order (seriously, this is the order my doctors, correctly, rank my conditions):
- Cancer
- Anxiety
- Crohns/Colitis
Anxiety is second only to cancer.
This is accurate.
Throughout my life it has been anxiety, not cancer, that has most often threatened to do me in. In my late teens/early twenties, anxiety made me want to literally die. In my late twenties/early thirties, anxiety made me unable to face any facts that were inconvenient to me or that would result in my abandoning old coping mechanisms (drinkin’, smokin’) that I had been using since I was a kid to still the terror spinning and widening in my brain.
I am writing this, in large part, to alleviate the remarkable anxiety I am feeling about going to a new cancer center, in a new city, where I know nothing about anything. Today, in my fear, I return to the first mantra I was taught: “What’s this? Don’t know.”
I am going alone today. Sarah offered to accompany me, but I prefer alone in these matters. I am too “attuned” to what everyone else is thinking and feeling. As my friend Sal noticed, “You are just taking in everything and everyone around you, constantly.” (She surely put this in a more concise, witty way.) And she is correct. This is a superpower: I can scan a room and inside of about thirty seconds have a solid guess about where everyone in that room is at emotionally. Great skill for classroom teaching. No one ever taught me how, I taught myself how. I had no choice. This was a survival mechanism.
Doesn’t serve me well in a healthcare setting, though. I’m always trying to read the nurses’ faces, the doctor’s expressions (ever more difficult now because you fuckers couldn’t be bothered to get a vaccination and so here we still are). I am reading the room always, trying to understand the subtext, trying to find the falsehoods, the slip ups. In a medical setting, I come in on terrified defense. I can play stoic. I can seem calm until they wrap that cuff around my little arm and the machine starts yelling that my pulse rate is way too high. (Three months ago, last time I was “seen,” my pulse rate was up around 168 — they made me drink water, breathe, get a grip until it came down to at least 150.)
I have medication for this.
I don’t like to take medication for this because my Patented Crazy Brain tells me that if I’m not 100% on absolute 100% freaked-out-guard someone will fuck with me, miss something, hurt me, fuck me up.
I know this isn’t true, but this is how I feel.
So the clonazapam (sp?) will languish for another day because I am still telling myself a particular story, a story about how if I am not sharp as a fucking tack, really awake and on my shit, someone will fuck me up.
Within the American Healthcare System, I trust no one until they give me a reason to trust them.
I have cause to feel this way.
I came by this demented, pointless, all consuming, suffocating fear
honestly. I came by it honestly, I can assure you.
There were dark days, early after my re-diagnosis, early in the pandemic, when old ways of “getting out of a jam” floated back into my mind and heart.
If you aren’t alive, you don’t have to endure this.
At forty-three, newly dx’d with stage iv MBC, not yet sober, I considered the “out” I had considered so many times when I was younger.
At forty-five, I roll my eyes at forty-three me:
Seriously, bitch? We’re going to play this tape again?
No.
I am talking now about suicide. Let’s not be coy about this.
I am not suicidal anymore. Not since I got my head put on a little more straight. Not since I made some new friends, and leaned into the wisdom of old friends who’ve borne witness to my entire life.
I am going to drink my coffee.
I am going to take a shower.
I am going to put on comfortable, desert rat clothes.
I am going to drive to the University Cancer Center, and I am
going to be brave though sometimes I’m so tired of being brave.
Sometimes, I don’t want to have to be brave. Sometimes, I simply want
people to do their jobs, to do right by me, to care. Not because I’m special or more deserving but just because I am a human being. I want my healthcare providers to treat me with the same care and attention I am able to give my students on 99.9% of my days, even in a KN95 mask all day, even when my personal life is unsteady. I want healthcare providers to show up for me, to help me know I am safe, to help me.
I have had the bad luck of being not once but twice fucked by the American Healthcare Industry. The first is a long story that starts in 1989 and ends, ostensibly, in 1990. The second is a shorter story that starts in 2019 and ends today when I walk through the doors of the cancer center in my new home city of Tucson.
At the start of the school year, I asked my 6th graders what words they wanted to define the 2021–2022 school year. Remember, these are 11 & 12 y/o children who haven’t been in a classroom since they were 9 or 10. So strange. So I asked them for words. The first word offered (by way of shouting across the room because we haven’t quite yet mastered “raise your hand first”) was “brave.”
I paused on the word. “I like this,” I told the child, writing her word on the board. “I like this a lot. Who else likes this word?” Many hands went up in the air. This would be our word for the year: Brave.
I will be brave.
I will be okay.
Well, I might not be okay, but you will be okay.
Unless you have cancer, in which case I can’t really say.
You might be okay. I might be okay.
Regardless, we can be brave.
And here I go, headfirst, into what circumstances I am not sure.
And here I go, facefirst, into what experience I am not sure.
And here I go.
