By JONAH BELECKIS, Wisconsin Public Radio
MADISON, Wis. (AP) — Ellen Samuels has spent many hours in noisy, cramped MRI machines.
She said medical staff would give her these “little headphones” to play music, but the sound of clanking metal coils and vibrating electrical pulses all but cut out that music.
So to pass the time, she wrote poems in her head. Without the ability to jot them down, she came up with the haiku because the five-seven-five syllable format was easier to remember.
She then extended this practice to her other treatments, whether she was at an infusion center or in the hospital to receive different medications.
“It really helped center me and gave me a sense of control when things felt very out of control,” she told Wisconsin Public Radio.
Samuels, a professor of English and gender and women’s studies at the University of Wisconsin-Madison, has Ehlers-Danlos syndrome – an inherited connective tissue disorder that perhaps most visibly causes a joint hypermobility.
“The ligaments that are supposed to hold your joints in place are weakened by this disorder,” she said. “I can dislocate my shoulder just by turning over in bed.”
She has released a new book, “Hypermobilities”, which is a collection of short poems written during two years of medical treatment. She said it was like “a haiku memoir.”
Samuels said his diagnosis was considered rare, although the number has increased in recent years, suggesting he may have been underdiagnosed.
She said Ehlers-Danlos syndrome is a defect in collagen, “one of the building blocks of our body.” The syndrome can result in subluxation, which is a partial dislocation.
In 2014, she was diagnosed with a complication with her Ehlers-Danlos syndrome which found a dissection of one of the arteries going to her brain, she said. This prompted more emergency MRIs of his head and neck.
She published poetry earlier in her career, but that was a long time ago.
At first it was just in a file on his computer, sometimes sharing a poem on social media. After 20 or 25 haikus, she said she realized that her writing wasn’t just about dealing with harsh treatment.
She was on her way to a book.
Samuels said she would encourage others in the disability community to write or be creative in a way that works for them.
She has spent the last decades teaching. She remembers students who might start a semester with no poetry writing experience and end the term discovering “that rich, beautiful poetic voice they didn’t know was there.”
“I think writing is a gift, but it’s also a learned skill,” she says. “Everyone can do it.”
Samuels is a founding member of the UW Disability Studies Initiative, which is a program that studies the economic, social, cultural, and political elements of the subject. The program partners with disability communities across the state to “transform public understanding,” according to the program’s website.
Samuels said she and others with chronic illnesses or disabilities often feel this “connection” that they don’t want pity, but they also don’t want to pretend everything is okay.
Being honest when asked ‘how are you’ can bring some pity, she said, reinforcing the idea that ‘healthy’ people are in a category of their own, separate from people with disabilities .
It might seem uplifting to see someone in Samuels’ position and think “I shouldn’t complain.” But she said it can be “deeply dehumanizing” because “it suggests we’re not the same kind of people”.
“That was true when I wrote the book before the COVID-19 pandemic, but certainly during the pandemic it becomes clear that we are all vulnerable,” she said. “We are all physically, mentally and emotionally interdependent, connected and vulnerable people who cannot divide ourselves so easily into the worlds of who is healthy and who is not.”
But there are still thoughts and feelings that some can only truly attain by having an experience themselves. Overall, the disability community “supported me throughout my experience, both before and after diagnosis,” Samuels said.
She said other writers sharing their experiences have been very helpful to her.
“You are not alone. It is extremely isolating to have any type of disability, to have any type of chronic illness. You often feel very cut off from the world,” he said. she said, “I see all of my writing as different ways of connecting with this community and saying, ‘You’re not alone’.”
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