Adapted from a story by The Washington Post’s Travis M. Andrews.
“Emily’s mom just found this,” he tweeted. “Certain objects have the power to pull you back. Wow.”
Emily's mom just found this. I'd given her my phone number when she first came to the hospital when Emily got sick in case she needed to contact me. Wrote it on the back of the visitor badge.
— Kumail Nanjiani (@kumailn) January 8, 2018
She still has it.
Certain objects have the power to pull you back. Wow. pic.twitter.com/kptIxbFTfo
Eight months into dating Nanjiani, Gordon got sick and was placed in a medically induced coma. Nanjiani and Gordon’s parents waited in the hospital as doctors scrambled to diagnose her as her organs began shutting down, which is depicted in the movie, along with the cultural challenges faced by the Pakistani-American couple.
I hadn't seen this in 10 years. Probably not since that first day with her mom. Looking at it, I got pulled right back into that moment. And the strongest feeling I felt was this kind of fearful floating. Emily's condition & disease at that point felt so big & unknowable.
— Kumail Nanjiani (@kumailn) January 8, 2018
One of the main issues, Nanjiani said, was that doctors had no idea what was wrong with the young woman. Nanjiani desperately tried not to obsess about it. “ . . . You expend so much energy to not think about the one thing that’s unthinkable,” he tweeted. “So much of your entire being is spent trying to not think of the worst case scenario. And every day was a new theory on what it was.”
When a doctor told the family that Gordon likely had leukemia, Nanjiani said, “I thought ‘Well if it is that, at least we’ll get to talk to her again. Her parents will get to say goodbye.’ That was an actual thought I had.” He said that he “had a family member who had passed away from that disease.”
Eventually, doctors determined that Gordon suffers from adult-onset Still’s disease, an extremely rare form of arthritis that can shut down the body’s vital organs and lead to death. It’s found in one in 100,000 to 500,000 people in the general population, according to the International Foundation For Autoimmune Arthritis.
“Basically, your organs can start getting inflamed as if they’re under attack and have an infection, but they’re not,” Gordon told the Hollywood Reporter in June. “Because I wasn’t diagnosed or being treated for it, it just kept getting worse and worse. My organs kept getting more and more inflamed until I had to be hospitalized.”
After her diagnosis, Gordon eventually was taken out of the coma and recovered. While her disease can be monitored and its symptoms kept at a bay, Gordon said she has to focus on “self-care,” which includes getting enough sleep, eating healthy, not drinking too much alcohol and taking care to rest when she feels an episode coming on.
Since the film hit theaters last year and became an unexpected success, Gordon has become something of an advocate for those suffering from Still’s disease, often sharing her story with reporters and at conferences — which Nanjiani said fills him with pride.
“I’m proud of her for being open about it & for sharing her story with people,” he tweeted. “I think sometimes people feel shame for having a disease or condition. But they shouldn’t. It’s not your fault. She’s dealt with it by talking about it. Her condition is part of her, but it’s not all of her. It doesn’t define her,” he said. “But it’s something we’ll deal with for the rest of our lives. And that’s OK.”