When I spoke with my palliative care physician about a referral to a mental health professional, my doc said they knew just the person.
A little scene-setting never hurts: The palliative care offices are tucked neatly between Senior Care and Optometry on the sixth floor, overlooking a commons area between the county hospital where I receive services and the children’s hospital across the green space.
The towering glass facade of Eskenazi reflects the city back onto itself on the near-West side of downtown. The reflected cement and steel city outside these futuristic, ten stories of tinted glass signals the bold proclamation that all deserve access to the best care in the best possible setting.
Checking in for appointments at the front desk greeting visitors as they step, roll, or shuffle from the “green elevators,” I am asked, “Optometry?” “Palliative care,” I reply. I am handed the clipboard and directed to door D. I glance while I walk to see “Senior Care” in narrow, sans serif font mounted in sharp black text on the clean, white walls. Diagnosed at 34 years old for a disease with a median age of diagnosis of 64, sitting in the Senior Care waiting area brings a grin to my face.
A few questions into the anxiety questionnaire, I snort with laughter. The GAD-7 asks the survey respondent to circle the number corresponding to the prompt: “Feeling afraid as if something awful might happen,” ranging from “Not at all” to “Nearly every day.”
Something awful might happen? Something awful did happen! I have fucking terminal cancer!
“Most people with cancer feel like something awful might happen, so we take that into account when scoring,” my mental health professional reported back while I took at least half of our first session to provide the Director’s cut commentary to my anxiety and depression questionnaire responses. In fact, whether I always want to hear it or not, telling me just how unremarkable I am seems to be my psychologist’s prime directive! I mean that both to be funny and serious. I benefit from a kind but firm level-setting that reminds me while we each are unique snowflakes, there are only three phases of H2-0.
So that there isn’t a question: While my surgeon and oncologist have kept me alive, it’s this clinician who offers healing.
Afraid that something awful might happen is the lens through which many of us cancer patients probably see the world. It’s the attitude that I’ve adopted, or at least adapted to having. If not fear, acknowledgement that something awful might happen. This feels like a necessary awareness. It’s floating around somewhere with the scanxiety we feel before routine MRI scans, like my last one on August 22, 2022.
You have an awareness like this, too. You love to tell us cancer patients about it: “I could get hit by a bus tomorrow!” I.e., “I fear something awful might happen.” Of course, that’s not really the same. The bus metaphor is wholly unhelpful. It centers you in the attempt to comfort me. It projects your awareness of life’s uncertainty onto my very real certainty of facing an existential threat. If we were at the arcade playing Frogger you may say, “I could get hit by a bus!” I’d say, “Me too!” But when you’re talking to me about the bus, what you mean to express is that my unexpected and serious diagnosis has given you reason to reflect on the precious nature of life, and you should probably just say that. No bus needed.
My recent scan was stable.
It’s taken me this damn long to tell anybody that news outside of my close circle. And don’t get me wrong, it’s good news! So why then has it been so tough for me to let it out? Whitney and I posted our usual MRI selfie. The scan went according to protocol. I met with my oncologist. What’s the big deal about throwing up a quick Facebook post, appreciating the likes, in turn, liking the comments, and we can all move on with our lives?
The difficulty with me telling you the news of my stable scan is grounded in this: We can all move on with our lives. In fact, the harshest (but most liberating) lesson that each cancer patient must learn, bigger than that, the lesson taught to all when we have the good sense to pay close attention to our mortality is that brutal and freeing truth: Life moves on.
The liberation comes through acceptance that our friends, family, jobs, soccer clubs, and microbreweries don’t depend on us for their survival, hell, even for their success and joy. That all are sad in our passing is expected. The liberation comes when we choose to be passionate and powerful in the present moment because with or without us, life moves on. When we accept that, and I mean truly get it deep in our bones, we strive for a just world that liberates all to be passionate and powerful in their present lives and speak against those who would deny others this power. True power uplifts.
But the acknowledgment; the fear. We become paralyzed. We put off sharing otherwise good news.
In the gratitude of good news is the fear that something awful may be coming to spoil it. We begin to mitigate our due joy for fear of it slipping through our grasp. We mute our celebration and measure our smiles. We’ve dropped enough jaws at medical conferences and waiting rooms with our long survival that we dare not tempt death with loud applause.
Feeling as if something awful may happen.
The could-be has robbed us of the is. The possible is a thief of the present. This has all been hard to see, but thankfully, I’m neatly tucked in between Senior Care and Optometry.
This post originally appeared September 12, 2022, on Glioblastology. It is republished with permission.