It cried out in the dead of night. The wild call erupted like the sensual panic of a volcano beneath placid moonlight.
My partner, Andy, was helping me get situated in bed for the night when the startling sound rang from the woodland edge outside our bedroom window.
“That’s a fox,” he said.
Intrigue perked my sleepy eyes. I’d never before heard the vociferous mating summon of a vixen. New experiences with nature never fail to fascinate me.
That week, I was scheduled for a urology work-up with a new provider to check on the welfare of my Mitrofanoff. Apprehension befell my sweaty palms.
I anticipated a lengthy discussion about my complete history with SMA, beginning with an educational snack on what the heck SMA is. Not only is my SMA unique to most healthcare providers, but so was my Mitrofanoff appendicovesicostomy and the delicate rerouting of my entire urinary tract.
After completing my ultrasound and lab work, I sat in the exam room with docile thoughts drifting from my mind like iridescent soap bubbles on a spring afternoon.
I miss my old doctor. I wonder what he’s up to these days. I hope I like this new one. I hope she’s nice and genuine. Easy to talk to. What do I want for lunch after this? Can I get a hallelujah for LUNCHTIME?!
Muffled voices and a rapping on the door burst the sweet illusory fizz of my bubbles. Two women bustled into the room with exuberant introductions. One straggling bubble lingered: Why do doctors even bother knocking when they come crashing into the room on a burning mission? Pop.
After listening to her background story, I expelled a glorious sigh of relief. This provider had many years of experience in pediatric critical care at a noteworthy hospital system. She understood SMA. She was well-versed in Mitrofanoff procedures. She appreciated my relief, and she honored my trauma in a mindful, unspoken way.
People like that don’t cross our paths every day. When they do, arts and crafts hour begins, because it’s time for a friendship bracelet! (Or should I say, a patient-provider relationship bracelet?)
We talked all things pee — about my initial surgery, daily catheterizing routines, caregiver involvement, quality of life, and SMA. I’d already grown fond of her when she said something unexpected.
“And how’s your sexual health? Any issues with your Mitrofanoff and how it plays into your sexual function?”
One question, one deep validation of my identity as a woman with a disability.
Why yes, I had several questions and thoughts to share — not only regarding my anatomy and the closely knit communities of the urinary tract and sexual wellness tract, but emotional matters, too. She acknowledged my sex life as a natural component of my whole self. It meant a lot to me.
She further explained her previous experiences working with a sexual health program for teens with spina bifida and Mitrofanoff stomas. What a cool concept, I thought.
As a kid, the medical community’s prediction of my life expectancy didn’t stretch much beyond my teenage years. The train of time chugged forth. Year after year, I lived with unyielding gratitude for another chance to live, think, speak my mind, learn, and breathe.
With extensive gratitude came complacency. In unfavorable conditions, too much of any good thing turns sour. I settled and ignored realms of my life that deserved to be explored. I neglected a habitual practice of asking myself what I wanted out of life, out of a partner, out of this great adventure beneath my wheels. I grew itchy and disenchanted.
In the narrative of my teen years, sex wasn’t a trending topic. I presume it made people uncomfortable. Historically, sex and disability is considered an unsavory concoction in our society. Here was a girl who had wielded her sword against the belly of medical beasts. Isn’t it a miracle she’s able to feel the sunshine or listen to songbirds? Why bother with life’s fringe topics like sexual health?
Like the fox relies on the earth’s magnetism for seeking out its prey, humans sense a pulsing magnetism toward those whom they’re attracted to. There I was, teetering on young adulthood, with a vixen scream building inside of me and no voice coach to guide me into healthy behaviors.
Now I’m 34, and I really enjoy talking about sex and SMA. I wasn’t taught how to navigate sexual health, dating, relationships, and SMA until I asked questions to people who held my best interests at heart. Then, I had to learn how to communicate my wants, desires, and worries. I had to learn how to accept a partner who celebrated my body.
I needed to grow respectful of myself and believe I was worthy of intimacy, autonomy, and nourishing relationships.
I’m still learning, every day.
Note: SMA News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of SMA News Today, or its parent company, BioNews, and are intended to spark discussion about issues pertaining to spinal muscular atrophy.
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