There are many things I miss out on because of migraine. Listening to podcasts is not one.
Friends will be familiar with my habit of interrupting conversations with random information I have acquired from hours of audio detailing how sushi is trending in Pakistan, or that, according to David O’Doherty, Lululemon make the most comfortable underpants.
Podcasts demand little of migrainous eyes. And, if you choose the right one, little of the migrainous brain. That said, serious political podcasts often make for the most relaxing option, without discordant interruptions of “banter”.
Whatever considerations go into choosing the right show, escapism is usually high up on the list of priorities. This is how I found myself listening to a Modern Love podcast titled For a 30-Year-Old Virgin, It’s Now or Never. Because if escapism is what you want, sex (normally) delivers.
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Modern Love, for anyone who doesn’t know, is a popular New York Times podcast based on a weekly column in which contributors share their unique experience or revelations about love. From Bi to Beige and Back Again and Nudes of The Man I Miss are recent titles.
In this episode guest, Clare Almand begins by reading her essay: “The candles were lit, the gin and tonic was chugged, his pants were down. I hesitated for a moment before saying, ‘I’ve never actually done this before’. I was talking about sex.”
Almand was born with a congenital heart disease. Nearing 30, her health began to deteriorate. Her future seemed uncertain. Five major heart surgeries before the age of 10, five minor heart surgeries since; her life was far from normal. Virginity was just another factor that added to this sense of difference.
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So why did she choose to lose it to man in whom she had little interest?
A man who on this, their fourth date, heaped salt on to her homemade guacamole because he felt it was under-seasoned. (Almand, I reiterate, has a life-threatening heart disease…)
“I saw an opportunity to feel a little more normal, and I took it,” she explains. Losing her virginity was a strategy “to cut down on the list of things that made me less desirable as a partner”.
Ouch. This was not the escapism I sought.
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Shame, guilt, inadequacy... these are feelings all too familiar to people living with disability and chronic illness as they face the perilous dating scene.
Am I asking too much?
Am I capable of giving enough?
And, of course, the dreaded B word. “Burden.”
It’s a term reserved only for the most intimate of moments. A fear that resides deep in the bones. I’ve heard friends express this worry in hushed and anxious tones, only to look at them and think “Burden someone with your humour and intellect? With your gushing heart and steely resilience? Disrupt their life with your sense of fun and mischief and ability to keep caring for others despite the challenges put your way??”
But these fears are not borne out of nowhere.
Perceptions of desirability exist across all communities. It is this very subject that is at the heart of Celine Song’s recent box office release, Materialists. But for people living with disability, insecurities are often compounded by interactions with educational, medical, professional and governmental bodies where their dignity is not upheld. Over time, these messages seep in to shape our sense of self. Almand is not alone in dismissing her instinct so as to cut down on the list of things that make her a “less-desirable” partner.
It’s six years since Almand wrote the original essay. The host asks her how she feels about herself and desirability now.
“Oh, you know, I’m kinda awesome,” she says, “I’m Clare Almand and cheating death is kinda my thing… no one I’ve dated has really appreciated that and that’s what I deserve. I deserve that.”
It’s an honest, unpoised declaration. An understanding that illness can mean not that you deserve less but require more. I’ve been lucky in finding that. Maybe to observe that others are not so lucky hurts more now for this reason.
So yes, we could create ad campaigns, or remind our friends who live with illness to reframe their beliefs, to “do the work” and love themselves. We could offer condolences or a listening ear when they share feelings of unworthiness. But imagine instead of telling people that they weren’t a burden, we created systems that didn’t make them feel like one?
There are many things we miss out on because of chronic illness. Love should not be one.
