Last year, Kumail Nanjiani released his first feature film, “The Big Sick,” to wide acclaim. It’s based on the real-life love story of Nanjiani and his wife Emily V. Gordon, who co-wrote the movie.
Eight months into dating Nanjiani, Gordon got sick and was placed in a medically induced coma. Nanjiani and her 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.
This week Nanjiani posted to Twitter a photograph of the hospital visitor badge that he wrote his phone number on for Gordon’s parents, as they all waited nervously.
“Emily’s mom just found this,” he tweeted. “Certain objects have the power to pull you back. Wow.”
The comedian, who said he hadn’t seen the hospital badge in a decade, then opened up about Gordon’s hospital stay in a series of uncharacteristically candid tweets.
“Looking at it, I got pulled right back into that moment,” he tweeted. “And the strongest feeling I felt was this kind of fearful floating. Emily’s condition & disease at that point felt so big & unknowable.”
The days Gordon spent in a coma remains “the longest we’ve gone without speaking since the day we meet,” Nanjiani wrote.
To pass the time, the actor “played Mario in the waiting room for days on end.” He played so much that sound effects from the game stuck with him, and he said he “couldn’t hear the sound of (Mario) collecting coins for years after that. I remember thinking how unfair it was.”
That feeling of unfairness stuck with him. At one point he said, “I remember going to Walgreens & getting angry at someone just buying gum. Why do you get to live a normal life?”
One of the main issues — both in Gordon and Nanjiani’s actual life and in the movie they penned — 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 said. “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.”
“I remember the day they thought it was leukemia,” he continued, adding that he “had a family member who had passed away from that disease.”
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.”
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, 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.
She does all this with Nanjiani’s help.
“My parents call him my lion, and he really is,” Gordon told the Hollywood Reporter. “At times when I’m not great at self-care, he will force me to be good about it.”
Since “The Big Sick” hit theaters and became one of unexpected success stories in film in 2017, Gordon has become something of an advocate for those suffering from Still’s disease, often sharing her real-life 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 said. “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 added. “But it’s something we’ll deal with for the rest of our lives. And that’s OK.”
Nanjiani’s tweets struck a chord with some Twitter users who had their own experiences with illness.
“This is perfect,” one user responded. “My husband was diagnosed with MS a few months after we met. I had so many of those ‘why do YOU get a normal life’ moments (still do sometimes). But yeah, it’s not who he is — just something we deal with.”
“I was sick for more than 1/2 my life. Deathbed sick. Had to write a will while my heart was failing sick,” another user responded. “It took me 8 years of perfect health to become ok with talking about it because I felt weak/guilty. This thread is fantastic. This movie is fantastic.”
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