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April 17, 2024

Alum presents new book at Hopkins ADA event

By EUNICE NAMKOONG | November 14, 2019

COURTESY OF EUNICE NAMKOONG Alum Porochista Khakpour was diagnosed with Ehlers-Danlos syndrome.

Hopkins alum Porochista Khakpour visited Homewood Campus to speak about her most recent book, Sick: A Memoir, in Charles Commons on Thursday, Nov. 7. Hopkins Advocates for Disability Awareness (ADA) co-sponsored the event. 

Other co-sponsors of the event included the Office of Student Disability Services, the Alumni Association, the Office of Women and Gender Resources, the Office of Multicultural Affairs and the Office of LGBTQ Life. 

In response to the question of what the moral of the book is supposed to be — a question which she said she is frequently asked — Khakpour revealed that the moral is that there simply is no moral. This reflects the sheer facts of reality, she said. 

“For most people, if they felt what I feel, they would go to an ER everyday,” she said. “The experience of chronic illness is very messy, and there are no answers. There’s no real cure. I didn’t have this moral at the end or a call to action, which does annoy some readers, because there is no answer.” 

Khakpour’s memoir has been enthusiastically received by critics at Time magazine, The Boston Globe and other literary outlets. 

“I’m primarily a novelist. That’s how I identify myself, a fiction writer,” she said. 

For years, though, she devoted her passion for writing to journalism, initially writing arts and entertainment pieces before moving to investigative journalism. Then she became an essayist for the New York Times

This, Khakpour explained, is what connected her at last with the online community that would eventually prompt her to write her memoir. 

However, she said, at that point in her life she still felt that she was lacking a theme.

“I really didn’t think I had a memoir topic,” Khakpour said. “Then I started getting very ill. I started getting more and more and more ill. Turned out, my entire life I was in denial that I was chronically ill and disabled.”

After being diagnosed with Lyme disease and several other conditions, Khakpour began regularly posting updates on her social media platforms. 

This led to the formation of a tight-knit online community based around the shared experiences of people trying to navigate their lives with their particular disabilities.

“That community has been my community and has been largely a positive experience,” Khakpour said. 

In fact, Khakpour shared, her online community helped her receive a diagnosis for Ehlers-Danlos syndrome. 

She said that she did not believe she otherwise would have recognized the symptoms without this help.

“They were able to read my descriptions and match it up with photos of me on Instagram. And they were so respectful. The last thing people with chronic illness want to do is diagnose others with it,” Khakpour said. 

After coming to terms with this diagnosis, Khakpour explained that she finally decided to write a memoir about her life.

“I thought that I would write a memoir as an act of service. I envisioned it as a book to hand out at hospitals. It ended up selling more than both of my books combined,” Khakpour said. 

After her presentation, Khakpour took questions from the audience on topics that ranged from balancing multiple identities to the burdens that come with dating and having a disability, the concept of death, and the purpose of the book.

One of the key points that Khakpour touched on was the misconceptions that people have about the disabled community.

“People think illness as a concept is preparation for death. That we are supposed to be more at peace with it. It’s made me more horrified more than ever. I feel like I’m running out of my many lives,” said Khakpour.

After the event, several attendees shared their thoughts with The News-Letter. Community member Anna Oier said that she had read Khakpour’s memoir and saw that there was a reading in town, so she came.

“I thought it was just interesting to tie her face to the story,” Oier said.

ADA President Madelynn Wellons talked about why ADA wanted to bring Khakpour to campus.

“We really wanted to bring an author to campus, especially someone that talked about disabilities,” Wellons said. “A lot of our mission is getting at intersectionality. She talks a lot about being a woman of color, a woman in the LGBTQ community and a woman with disabilities. It hit all of the spots.”

ADA Vice President Sabrina Epstein explained what hearing from Khakpour meant to her. 

“The highlight was just hearing her read the beginning of her book. Hearing it from her was just a whole ‘nother level. It definitely changed things for me,” she said.

Epstein added that she had read the memoir when it came out and found that it resonated with her and her experiences. This is why she wholeheartedly recommends Sick: A Memoir.

“I read a bunch of chronic illness memoirs since I got sick when I was in high school. This is the one that I felt like it wasn’t written for well-people because it doesn’t tie up the loose ends,” Epstein said. “I read this a year into realizing that I wasn’t going to get well and it was the only book that I felt that got that.”

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