(A devotional I gave at a Mormon women’s retreat called Northwest Pilgrims in April, after which I promptly came down with Covid).
– – Thread – –
Like Mendel’s peas, I inherit a dominant gene passed on from my mother. Hereditary multiple exostoses. It causes bony growths on the edges of my bones, twists my wrist, shortens my finger. All because a single gene, EXT1 on chromosome 8, had a mutation that prevented it from placing a heparin sulfate complex on signaling proteins that direct bone growth.
When I am 15, I overhear my grandmother, one of my favorite people in the world, telling a neighbor how selfish my mother was to have children and pass on this disease; that she wishes her son had married another woman and given her healthy grandchildren.
Selfish. For having me.
Was this the beginning of her dementia that warped her brilliant mind and turned her brain into a psychological prison of torture? Did I inherit genes from her that will cause the accumulation of amyloid plaques and tau proteins and break down my brilliant brain, turning me into a stranger to myself?
– – Thread – –
By the time I’m 25, I realize that I won’t be able to have children. I have new pain in my hip, deep in my pelvis. My doctor finds a tumor the size of a grapefruit, arising off my iliac crest. He excises it, leaving me once again with scars. Imaging also reveals multiple small bone growths dotting my pelvis, shifting the way muscle tendons attach my back to my hips. I couldn’t carry a pregnancy without tremendous pain.
In many ways, I am relieved. I worried about passing on the dominant gene, of the surgeries and pain and disabilities my offspring would experience.
My imaginary children won’t have my red hair and they won’t be diseased.
The realization of my childless future is a gradual one and I don’t mourn it. My friends have married and are having kids and I am their pseudo-aunt. My youngest sister, with her perfect EXT-1 genes, will have 4 perfect, healthy children, whom I will love and love and love.
– – Thread – –
When I was 12, I discovered a place of pleasure between my legs.
When I was 12, I had my first interview with a bishop to determine my worthiness.
When I was 12, I stayed with my aunt for a summer. My aunt had left the church and had become a feminist who painted vulvas and hung them on her walls. She had a collection of books in her basement, and besides the guilt-reads of bodice rippers, there was another book collecting dust. The Miracle of Forgiveness.
Masturbation, I learned, was a sin next to murder, and if I didn’t repent, I wouldn’t be in heaven with my family for eternity. Worse, if I did repent and returned to my sin, my sins would multiply in their weight, because I would be rejecting the gift of Christ’s sacrifice. My words and actions and thoughts would be used to condemn me, the scriptures said, if I couldn’t master them.
When I was 12, I was suicidal and I was so petrified to die.
I confessed my sins to over a dozen bishops over two decades. Each time I got a temple recommend, having gone through repentance and fire, I never felt worthy.
– – Thread – –
I find myself in college and for the first time, I like myself. I make friends for the first time, since moving to my small, standoffish town at age 9. My high school years are a blur of bullying and unkind barbs because I was different and I’m all too glad to leave them all behind.
So I make friends, friends who will become family. We go to church together, worship together. I attend Institute where I study my inherited religion like I do other courses and I fall in love with my religion. My dad is a Mormon Democrat and like him, my faith influences my politics, and my political beliefs share my faith. I become Julia, Liberal, Feminist Mormon.
When I leave my birth religion, after a decade of questioning and searching, when the identity of “Mormon” chafes as much as the elastic of the garment cuts into my legs, I don’t know who I am. I am lost and go to therapy to piece me, Julia, back together.
– – Thread – –
I went through the temple when I was 22 with my best friend by my side. I had completed temple prep and I hadn’t messed up for nearly a year. For the first time, I felt worthy.
I loved the ritual and the symbolism. I loved the feel of the garments against my skin, holding and hiding my imperfections; loved how the sewn marks were tactile reminders that I was part of God’s family.
– – Thread – –
I had my first surgery when I was 12, followed by a half dozen more in high school.
When I was a junior in high school, I pushed off the side of the swimming pool and a tendon caught on a bone growth like a crochet hook, leaving me unable to walk and in unbearable pain.
My grandmother, loving and desperate to help, visited an herbalist and sent me a package of dried alfalfa. If I took a capsule a day, all of the calcium would dissolve off my bone spurs.
I refused to take it. Science refuted that it would work.
My aunt demanded to know why I didn’t want to be healed. I guess, she said, you just like having surgery.
The blessings from my father, when he placed his hands on my head before every surgery, didn’t mention being healed.
– – Thread – –
I was supposed to get married by the time I graduated college.
I wanted romance, wanted somebody to see my flaws, see me and love me and want me.
It didn’t happen.
My crushes were embarrassments kept deep inside. I longed for romance but couldn’t bear the thought of telling a righteous man that I hadn’t kept my virtue. I fell in love with my best friend from medical school and never told him. We made better friends anyway. (I never got a chance to find out).
I never got a first kiss. I never got the sexual sacrament for which I tied my soul into knots.
I’m happy and fulfilled being single. It suits me.
Being unloved will always be a secret wound that sits deep in my heart.
– – Thread – –
A patient dies because of me. I didn’t put together the signs of their decline and two hours later, when the rest of the team arrives that morning, their low blood pressure that I had frantically tried to fix has caused end-organ damage and they never recover.
A patient lives because of me. For six hours, I stand by their bedside, taking them off the ventilator when it alarms that their oxygen is low, hand-bagging air into their lungs. I push meds of adrenaline and watch their blood pressure rise and fall, rise and fall, rise and .. stabilize. A week later, they walk out of the hospital.
I stop believing in a god of miracles long before I lose faith in the church.
– – Thread – –
I am 31. I have just placed my fingers on my clitoris, even though I had promised myself that I wouldn’t and I am crying after the orgasm.
“Stop.” I hear in my head. “You are worthy. You are loved. And this. This is not a sin.”
I feel a wave of warmth that I associate with the spirit.
Was it an answer to prayer or just me, so tired of the endless guilt?
I buy my first vibrator that month and I feel whole. I stop being accountable to bishops and answer “yes” to any questions about my worthiness.
– – Thread – –
After I leave the church, I fall and injure my fingers. I can no longer bend them. I can’t shake hands with my patients, can’t place a central line, can’t intubate. I go through months of therapy with no improvement. I see a surgeon who diagnoses me with “an abnormal pain response” and dismisses my concerns.
I go to San Francisco Pilgrims and women from my faith background, women that I know and women that I don’t, lay hands on me – on my head and shoulders and broken fingers. I cry at their petitions. I am not cured. But I heal.
– – Thread – –
I left my religion at 37 after hanging on by my fingertips for years. The infantalizing of singles, the treatment of women, the conservative beliefs – it rose to a blister on November 5, 2015 and I walked away.
The first few months after, I had panic attacks that I was throwing my life and my salvation away. My skin felt foreign without my garments. I didn’t like the sensation of the wind blowing through my jacket without that protective barrier.
I grieved the loss of my religion. I left behind my surety of my purpose in this life and the next. I separated myself from my community that welcomed me no matter where I moved. Relationships with my family and my friends altered – they couldn’t understand why, not entirely, and I was now outside the fold.
I also left behind shame. I no longer had to justify the actions of the church that I disagreed with, actions that hurt my loved ones. I discarded fears of not being worthy enough, of not being enough.
Leaving was the hardest decision that I’ve ever made. It was also the best.
– – Thread – –
The destruction of the natural world aches now without the promise of rebirth. I struggle for purpose. I don’t know about God. I don’t like the idea of God.
I like the idea of humans though, of human emotion and human connection. I like the idea of a human family, brought together by our 23 chromosomes that are more alike than different.
I find meaning in books and poetry, in the repetitive crash of waves on the beach, in writing the love stories I never got to experience, in the smiles of friends.
I find comfort in the study of the brain. All that I perceive: touch, sight, pain, arousal, the position of my joints, the pressure of the atmosphere; is processed and experienced in my brain. All that I am is here. 37 trillion cells working in coordination to make me human.
It terrifies me, too, this electrical jelly of neurons and salt and proteins, that makes up all that I am.
I don’t know about what happens after death, if this consciousness continues. I don’t have answers anymore. I just have me.
Now.
Flawed.
And perfect.
And enough.
