Rare Disease Report

Star of The Big Sick Opens Up About Wife's Rare Disease

JANUARY 15, 2018
Mathew Shanley
In June, The Big Sick opened in theaters nationwide, and the true story of filmmaker Kumail Nanjiani and his now-wife, Emily V. Gordon, charmed audiences and critics, alike.

The feature film, Nanjiani’s first, focuses on his courtship of Gordon, and how her battle with Stills disease strengthened their bond. On Twitter last week, he opened up – perhaps more candidly than ever before – after Gordon’s mother found an old hospital badge.
“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.

She still has it.

Certain objects have the power to pull you back. Wow.”
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.
"The extreme fear & not knowing & the vagueness of it all created a bubble. And you just kinda float around in this bubble. Everything you see is through this bubble. I remember going to Walgreens & getting angry at someone just buying gum. Why do you get to live a normal life?"
"And you expend so much energy to not think about the one thing that's unthinkable. 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."
"I had a family member who had passed away from that disease. And the doctor just said it nonchalantly & walked out. 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. Oof."
"I played Mario in the waiting room for days on end, & couldn't hear the sound of him collecting coins for years after that. I remember thinking how unfair it was. And Emily is always so full of life & fills a room with her energy & seeing her like that felt vulgar."
"It's still the longest we've gone without speaking since the day we met. Ok. I gotta stop. This is too much. But I'll just say, her disease felt so unknowable & now it's this thing we know. We still deal with it, but it has a name & that is so important for us."
"I'm proud of her for being open about it & for sharing her story with people. 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 to ppl about it, & ppl have talked to her about theirs."
"Sorry. Didn't mean to type all this. I don't know what happened. I was just staring at that picture & couldn't stop. There's no larger point here. I'm glad she fought so hard. I'm proud of her for being strong. That's all."
"Her condition is part of her, but it's not all of her. It doesn't define her. But it's something we'll deal with for the rest of our lives. And that's ok. Whew. I'm really done now."


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