Ellen Samuels spent many hours in noisy, cramped MRI machines.
She said medical staff would give her these “little headphones” for playing music, but the sound of the metal coils clicking and vibrating electrical pulses almost cut that music off.
So to pass the time, she created poems in her head. Without being able to write them down, she imagined the haiku because the five-seven-five syllable format was easier to remember.
She then extended this practice to her other treatments, whether in an infusion center or in the hospital to receive different medications.
“It really helped me focus and give me a sense of control when things seemed really out of hand,” she said on WPR’s “Central Time” Monday.
Samuels, professor of English and gender and women’s studies at the University of Wisconsin-Madison, suffers from Ehlers-Danlos syndrome, an inherited connective tissue disease that perhaps most noticeably causes hypermobility joints.
“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 rolling over in my 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”.
READ MORE: Some haikus from Ellen Samuels’ new book are included under this story
Samuels said his diagnosis was considered rare, although the number has increased in recent years, suggesting he may have been underdiagnosed.
She said that Ehlers-Danlos syndrome is a defect in collagen, “one of the building blocks of our body.” The syndrome can lead to subluxation, which is a partial dislocation.
In 2014, she was diagnosed with a complication of her Ehlers-Danlos syndrome which revealed a dissection of one of the arteries going to her brain, she said. This resulted in more emergency MRI scans of his head and neck.
Then came the haiku.
She published poetry earlier in her career, but it was a long time ago.
First, it was just in a file on his computer, sometimes sharing a poem on social media. After 20 or 25 haikus, she said that she realized that her writing was more than just facing arduous treatment.
She was heading for a book.
Samuels said she would encourage other members of 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 without any poem writing experience and end the semester discovering “that rich and beautiful voice that they didn’t know was there.”
“I think writing is a gift, but it’s also a skill that can be learned“, she said.” Anyone 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 on the subject. The program partners with communities of people with disabilities statewide to “transform public understanding,” according to the program’s website.
Samuels said that she and others with chronic illnesses or disabilities often feel this “connection” that they don’t want mercy, but they also don’t want to pretend everything is fine.
Being honest when asked “how are you” can bring pity, she said, reinforcing the idea that “healthy” people are in a class of their own, distinct from people with disabilities.
It may seem uplifting to see someone in Samuels’ position and to think “I shouldn’t be complaining”. But she said it can be “deeply dehumanizing” because “it suggests that we are not the same kind of people.”
“It 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, bonded and vulnerable people who cannot so easily divide into the worlds of who are healthy and who are not.”
But there are still thoughts and feelings that some can only truly reach by experiencing themselves. Generally speaking, the disability community “has supported me throughout my experience, both before and after the diagnosis,” Samuels said.
She said that other writers sharing their experiences have been very helpful to her.
“You are not alone. It is extremely isolating to have any type of handicap, to have any type of chronic disease. You often feel very cut off from the world,” he said. she declared. “I see all of my writing as different ways of connecting with this community and saying, “You are not alone. ““
Below are some haikus included in Ellen Samuels’ book, “Hypermobilities”.
Nobody is supposed to
lean as far. Nobody knows
why you don’t just break.
Sprained ankle, while sleeping
Pain hot swelling, foot-
bruising of the joints. What dance did
you dream and forget?
Displacement of the first rib
I am the garden
Eve never picked up. Fist with-
in the bone, rising.