Elephants and Tea - March 2022 - 26

Frustration in Faith COVER STORY
off of work since it was no longer just
my mom with medical appointments,
and I was the only one who could be
fully present for all of the information
being launched at us like a rocket ship
going into space. I had to be my own
advocate, despite having no power in
the decisions being made about my
body, and there was no time for crying.
However, as hard as experiencing
The thoughts and prayers
didn't help or prevent this
medical debt from happening.
If we had a dollar for every
thought and prayer we
received, I probably never
Hodgkin's Lymphoma alongside my
mother was, the systems and toxic
ideologies I navigated and had been
introduced to both growing up and during this time in my life
impacted me in ways that made cancer and the aftermath significantly
harder than it should be.
The Evangelical Baptist Church is a place where I found hope
would have had medical debt.
throughout my adolescence, and it is also the place I began to feel
shame and didn't even recognize it. Shame for experiencing anxiety
and not " placing my faith in God, " exercising my voice and " disobeying
my parents, " not being a meek and submissive girl to the
male figures in my life and having absolutely no interest in playing
that role as a wife, having " lustful " thoughts when puberty was at
its peak, and for experiencing romantic feelings for folx that are not
cis-gender men. I was more afraid of having pre-marital sex than
coming out as queer. As a person of faith and not only experiencing,
but studying all of the changes, politics, and colonialism that
has gone into creating the " values " of many protestant churches
today - " values " specifically tailored to make people feel ashamed
and ostracized - I can no longer find hope in those walls, nor am
I welcomed or wanted authentically.
Compounding the shame of church, there's the shame of being
working or lower middle class that I experienced. Shame for
needing government assistance on and off growing up, shame at
church food banks from their volunteer staff and the mandatory
" evangelism " we had to listen to before receiving the groceries we
needed for dinner that evening, and shame from relatives for how
my parents were raising us and for choosing to have a large family
when my parents struggled so much financially.
And all of this shame showed up during cancer - some of
which I am still experiencing now. Shame showed up when church
members said we had cancer because of " immeasurable sin " from
somebody in our life, shame showed up when asking for financial
support through GoFundMe, shame showed up when my
parents couldn't afford our medical bills that insurance wouldn't
cover, despite having the best health
insurance policy offered through my
dad's employment. Medical bills that
continued through my late teens and
immediately impacted and destroyed
my credit before I even knew how credit
scores worked. This medical debt impacted
my ability to get a credit card,
apply for student loans, buy my first
vehicle, and most recently, purchase
my first house.
While we did have some community
support during our dual diagnosis,
the vast majority of people sent us their thoughts and prayers. The
thoughts and prayers didn't help or prevent this medical debt from
happening. If we had a dollar for every thought and prayer we
received, I probably never would have had medical debt. If every
person who says a cancer patient is in their " thoughts or prayers "
called their senators about improving healthcare, the 1.6 million
people diagnosed in the United States annually would probably
have both better access to care and no debt. And as someone who
does believe in prayer, as someone who does practice this in my
own life, I will also say that I believe prayer, in the evangelical
context, is the laziest excuse of " care " when used without intention
or the desire to do more. Thoughts and prayers are two of the first
statements shared with me at the beginning of my treatment for
Hodgkins. Of the people who expressed they were praying for me,
I can name two who are still in my life, nine years later.
When I went through a recent breast cancer scare and experienced
a finding that required a lumpectomy, my found family showed
up for me in ways my church and religious community didn't. My
found family, many of whom were raised within and have been
rejected by the church like myself, showed up for me in the most
authentic and loving way. Three years later and I still talk to all of
them on a weekly basis. Being queer, I have experienced the most
authentic, shameless love of my life. I have experienced community
through my queer identity that has been so compassionate and
honest, it has made me understand my own spirituality in ways I
couldn't in community with those who would shame anyone who
was brave enough to love themselves authentically. A community
that says they welcome all, but only conditionally. A community
that made me feel like a burden for speaking up, being gay, and
for having an illness out of my control.
I am not the burden. Shame is the burden. And shame is not my
burden to carry. l
HAILEY JOHNSTON IS A HODGKIN'S LYMPHOMA SURVIVOR AND ACTIVIST WITH A BACHELOR
OF ARTS DEGREE IN POLITICAL SCIENCE FROM THE UNIVERSITY OF NORTH CAROLINA AT
ASHEVILLE. SHE CURRENTLY WORKS AS AN EMPOWERMENT MANAGER FOR ONCOLOGY
AND HEMATOLOGY COMMUNITY EVENTS AND SHE IS THE FOUNDER OF ESCAPE: LGBTQIA+
ADOLESCENT AND YOUNG ADULT CANCER SUPPORT. SHE IS PASSIONATE ABOUT FOSTERING A
COMMUNITY THAT IS SAFE FOR SELF-EXPRESSION AND CREATING EQUITY IN HEALTHCARE .
26
ELEPHANTSANDTEA.COM
MARCH 2022
http://www.ELEPHANTSANDTEA.COM
Elephants and Tea - March 2022

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