Blurring the Lines of the Haves & Have-Nots
“I need you to meet me in the room where identity meets safety
the room where we gather – to learn what this feels like
so that we can replicate this same room within ourselves”
-Brianna pastor
You are now only the partial navigator in the body you took for granted. You’re a tool to teach med
students, a piece in a surgeon’s mental portfolio of their best/worst/most mediocre, a social worker’s note
of where you fall on the depression scale, a change to the chemo regimen or how many milligrams your
medical oncologist ordered. Your not-so-unique treatment plan for your very individual experience. At
least that group, the medical team, knows their role to play, and they are here for their exact function.
The treatment team does care, they wouldn’t do this work if they didn’t, but the necessary efficiency is
sometimes too much, like we are creatures on a conveyor belt.
That’s not the punchline. The most laughable part is when you realize you look forward to that
dependability – the people who are well-practiced in what to say. After a while, you start to have
favorites: the funniest nurse, the most skilled lab technician for blood draws, and the doctor with the
best laugh. Those people know what to say, where to steer you, and when to sit with you in whatever
you are feeling because it is literally their job.
The people outside the hospital, the ones who knew the old you or even the ones you just met, initiate a
game of blending in and gauging how much authenticity you can manage without scaring them off
completely. It reminds me of a comedy bit from my friend Ash Alexander, where she talks about how
“coming out” is not just a one-time, life-altering event – it is an exhausting, almost daily occurrence with
every person you want to be real with for the rest of your life. Certainly, there is no contest between the
cancer community and the LGBTQIA community concerning discrimination (though the level of
unsolicited advice given to both groups by clueless people does give a relatable parallel and some laughs
when sharing stories) but I do mean to say that awkward social situations outside of the circle of people
who “get it” can be enough to make a person shrivel up and never discuss their struggle.
I always assume no one wants to hear about my weeks of nausea, neuropathy, or new neurosis
regarding the radiology tech who always forgets to turn on the music during the scans! These are
examples of some of the bits and pieces of my moments that I’m afraid to tell someone about, because if
we discuss these fragments of daily living, then maybe we’ll also talk about my stolen moments with and
without friends and family. That is the real source of pain, far beyond whether or not my MRI got a
soundtrack through shitty headphones.
Recently, I had someone partner with me to get the time with friends and connections we’d both been
craving. I think we were perhaps too afraid to face a group, ANY group, alone due to the implied
expectations and that hesitant question loaded with pause: “How are you?”. We got through the
awkwardness of showing up as the newer, chopped-up and sewn back together versions of ourselves, a
year after our very different diagnoses. Even with dissimilar health conditions, we have some of the
same fears. We both have the fear of letting down loved ones by not being there for them in every way
all the time, like we previously have been. Between the two of us, at least on that day, we had the
energy to be there and truly seen by everyone. I got the guests together while she provided the
campfire to congregate around to have a normal evening surrounded by friends. There’s no good
answer for how best to be there for someone going through “it”, whatever “it” is, but forging new
moments during the tidal wave of isolation helps counteract the darkness.