By Rebekah Palmer
This essay was first accepted to be included in a story collection supporting National Organization of Rare Disorders, Inc. (NORD), a project titled Kaleidoscope Rare Disease Stories Told by the people who live them, edited by Kerry Wong. This collection will be released in 2024. NORD was the first patient organization that respected and validated the author for sharing all that went on during her cancer treatment in the 1990s for a panel on quality of life during PTLD treatment in 2022, specifically Debbie Drell.
I am in seventh grade this fall. Since Kindergarten, I have known I have a progressive rare metabolic disease called cystinosis that has affected my kidneys most severely in my body first. My kidney transplant took place June 24, 1999.
It was a success with a few bumps of reversing mild rejection and this continuing fatigue that should have been resolved with a now-working kidney. But as my seventh grade year in a fundamentalist Baptist school heads into October and November, I am experiencing many missed school days again, along with aching in my throat and left ear soreness.
An ear, nose, and throat doctor tells my mother I have behavioral problems as I shouldn’t be this whiny and tearful at my age and starts inquiring into her relationship with my father.
By December, my mother is wrung emotionally as I keep her awake with audible sounds of pain as well as my nine-month-old brother who isn’t sleeping through the night just yet. She feels like too much is on her plate as primary caregiver for her three children.
We go to a chiropractor who says my lymph nodes “feel like hamburger,” as in the ground beef meat. My mom calls the transplant center and relays the behavioral analysis of the ENT and what the chiropractor says. My coordinator gets us to the hospital where my kidney transplant took place within three days of that phone call and they complete a biopsy.
I have B Cell Lymphoma cancer. In the transplant handbook we were given in the summer, it said one out of ten kidney transplant patients get some sort of cancer.
I end up being the one out of those ten transplant patients. I was diagnosed with Post Transplant Lymphoproliferative Disorder (PTLD) (specifically B Cell Lymphoma) on December 17, 1999. I hear the doctors discuss the three months to three years life expectancy, but since I can remember I have also heard my parents in discussion when I was diagnosed with cystinosis that I would die between ages nine and 12, and I am 12.
Life only exists now and never later in my mind.
Emotionally, I feel numb. I watch the Nanny and Little House on the Prairie. My hair falls out, and I focus on these shows in reruns. I am being given chemotherapy. I stayed at the hospital for a week at a time when I received the drug through a Hickman tube.
My mom and my youngest brother are the most frequent visitors as my father works two jobs now to cover medical expenses and my middle brother is involved with wrestling and school and friends of the family and relatives look after him.
There is a psychologist who comes and visits me periodically, but I don’t know what to say to him. He typically comes and just sits in my room when I’m sleeping. I know this because the nurses tell me he was there.
He doesn’t talk much to me when he is there. And I don’t want to talk about my treatment and my cancer.
I don’t know how to start, but I want to talk to the psychologist about the sexual abuse I went through as a young child. The father of the teenage male who sexually abused me is the stand-in youth pastor until my church and school hires someone else. And his son is in the youth group. They keep coming to sing to me in my hospital room and I can’t even focus on songs meant to encourage me when they’re all in the room with me.
Even more than this, I want to find out why my dreams of romance as a young girl involve other women. In my religion, we don’t address this kind of thing — varying sexuality or gender-queer. There has got to be books on being Christian and gay, but I don’t know where to look.
Yes, my hair has all fallen out, and by the time my cancer is in remission in May of 2000, I feel so good in a body with a haircut so short that people mistake me for a boy.
But in the handbook at my school, the haircut I have would normally be against the rules because female students are required to wear long hair and male students are required to keep their hair on top of their ears — never shaggy below.
I am excused due to my cancer history, but expected to grow it out long again. So I do. Because who do I ask about Christianity and queer identity?
I am not getting the emotional and mental help I need. In addition to the psychologist who only visits when I sleep, another therapist is put on my appointment schedule between hospital stays, but we are not connecting. She’s so different from me in race, appearance, and religion and I’m in a 12-year-old headspace of white, able-passing, and fundamentalist Christian.
Neither am I getting assistance from my church. Every time a panic attack or uncontrollable crying episode or missed day of school located in the church building occurs, I am grilled with this idea that behaviors I am displaying are harming my family and the people around me. Nothing is said about my previous major surgery that caused my cancer.
The sexual abuse I reveal happened to me between ages three to five is dumped on me and my parents and not on the actual human who committed the crime against me. Any time I report abuse, I am put under a microscope and the accused is given excuses as to why they hurt me this way.
I lived like this for ten years after my cancer went into remission.
I reported two abusers in two different churches I existed in as a member and both leadership mentors in both places from different states tell me it is my fear and worry that is keeping me from peace with God.
Then one night in my childhood church that I came of young adult age in, the pastor makes claims about people who have been sexually abused.
He claims they can be easily spotted because they style their hair over their eyes and wear clothing revealing all different parts of their bodies. I feel incensed. This pastor knows my history, knows I follow the dress code standards of fundamentalist Baptists. So… I show up at church to play my violin with my hair styled over one eye.
And the next morning, my family is called because “I made a statement” that needs disciplinary action. Instead of disciplining my abusers, the church leadership recommends that I be sent away to a teenage girl’s home for troubled youth at age 23.
My father disagrees that it is I who needs discipline. It is clear I need relief and help, but punishment — no.
With the assistance of another local church in town, a psychiatrist became part of my medical team due to my extensive medical history. A cognitive behavioral therapist is also included who can speak to me surrounding spaces of Christianity, queer identity, sexual abuse, and terminal illnesses. I learn moments of sadness, shame, and guilt are all part of the human experience and are rectified with joy, forgiveness, and love. But prolonged sadness and lingering fears and doubts are conditions that humans experience and can be treated within shared community and healthcare.
I learn I have moderate depression and generalized anxiety disorder with complex Post Traumatic Stress Disorder (PTSD). My body had been reacting to rejection from core mentors in my life and the many medical near-death experiences I had survived along with the false teaching from pathological Freudian pseudoscience that a queer identity results from being sexually abused.
These life-long conditions were not because of clothing or styles I put on or took off nor were they reprimands for disobedience to those who supposedly had my best interests at heart. They are conditions in my mind and body because I went through adverse childhood experiences (ACE).
Where I needed to practice good behavior was in loving my neighbor and loving my God according to my conscience. That is a continuing practice in living and I can be thankful I am still here with what I did to survive to be a part of this world as a middle-aged female.
Rebekah Palmer (she/they) holds a degree in Professional Communication and Emerging Media from UW-Stout in Menomonie, WI in addition to a religious degree in parochial school teaching and secretarial training. She currently serves as the Vice President of Awareness and Education at Next Generation of Cystinosis. She is a dedicated rare disease advocate and a published author, and her articles have appeared on the rare news website PatientWorthy, digital magazine Rare Revolution, and #RareIs. She identifies as a white, disabled, Christian, queer and non-binary human.
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