‘Why Is Illness What Makes You See Us?’

‘Why Is Illness What Makes You See Us?’Esmé Weijun Wang and Porochista Khakpour discuss how Lyme disease interacts with their identities as women of color, writers, and friends

The story of how Porochista Khakpour and I became friends is this: after I was finally diagnosed with late-stage Lyme disease in 2015, years after being mysteriously ill and diagnosed with, among other things, complex post-traumatic stress disorder and fibromyalgia, someone told me to get in touch with Porochista. She’s also a writer, they told me, and she’s been very public about her struggles with Lyme.

I sent Porochista a Facebook message; to my surprise, she wrote me back. When she announced on social media that she would be in San Francisco, I summoned my nerve and asked if she would be interested in having lunch, which led to an hours-long conversation at the now-defunct Boxing Room. We spoke about Lyme disease, but we also bonded over writing and being women of color, as well as over myriad things that surprised and delighted me. Our friendship, to my mind, began there.

Since that lunch in Hayes Valley, we have shared a room twice at the Association of Writing Programs conference; sought treatment together from her doctor in Santa Fe, whom Porochista wrote about in her book, Sick; bonded for hours in motel and hotel rooms. I think of her as one of my closest friends. In the months before Sick was to come out, Porochista experienced a severe Lyme relapse, the difficulties of which were compounded by mold and lead exposure. She stayed with my husband and me for three weeks while she saw doctors in San Francisco, and in our guest room, we had the following conversation about Sick, Lyme disease, psychic friendships, and, of all things, Costco.

Esmé Weijun Wang: You got here on Monday.

Porochista Khakpour: And then when did I start the IVs?

EW: You started them on Wednesday, I think.

PK: Wednesday. Right, so this is our third day of IVs this week, where… Or rather, my IVs. You’ll join me next week. Of immunity drips: high-dose vitamin C, Myers’ cocktail with glutathione. Just sort of basic IVs. With me, it takes a long time because I have to go really slow. It’s been anywhere from five to two hours today, so that’s not terrible.

My Lyme relapse seems to have gotten very, very, very complicated because of mold, and then lead exposure. This is definitely the most rotten I’ve felt in a long, long, long time. And you’ve been so kind to open up your lovely guest room to me, which I’ve stayed in before, and have had such a lovely time. It was an emergency, basically. I flew out of New York, got to L.A.. Got to L.A., got sicker, and you were just like, “Come on over.”

January, February, March, April, May. God, it’s been a long time. The last four months of my life have been completely crazy. I had a breakup that was really hard. I had all sorts of difficult situations with my family back in California. My dog got very ill at one point; he had to be hospitalized. I’ve had at least three or four hospitalizations with this Lyme relapse. And then I’ve been displaced from my house because in my Harlem apartment, there was demolition going on above and adjacent to me, pretty illegal ones. So there was just a ton of lead, asbestos, and God-knows-what exposure in my apartment. And because I was so ill and depressed, I didn’t really act in time. For the last month of my life, or a little more than a month, I’ve been just crashing with random people with my dog. [chuckles]

The last four months of my life have been completely crazy. I’ve had at least three or four hospitalizations with this Lyme relapse.

I’ve been sleeping on people’s floors, on their air mattresses… Guest rooms of total strangers, people following me on Twitter. And then I’ve been flying around the country. I’ll do two speaking gigs, like a Georgetown speech and SUNY Purchase; and then in between, go to New Mexico to get this Lyme treatment.

EW: I feel like in you discussing the context of this conversation, it’s not only giving context to how perilous life can be with an illness like Lyme, and all of the complications that can come with it; but also just how unstable it is. So many people we’ve talked to have tried so many things and experimented with so many ways of getting better.

PK: It’s endless.

EW: It’s endless.

PK: When I go into remission, I forget that… It’s like I have two selves. The last few years, it seemed like that was half the year; and then the other half, I would be this other person. You’re constantly having to come up with strategies and ways to exist, and, “Oh no, is this a Lyme symptom? Oh no, is that a symptom?”

EW: You and I have had many conversations since you’ve been here in which you’re asking me questions that I doubt even a very smart medical doctor would be able to answer, just because they’re so complicated. You’ll ask me, “Why do you think this is happening with my gums?” Or, “What do you think is happening with my stomach?” Or, “Should I eat this egg?” You’re confounded by all of these complex questions, and there’s not really a good answer at any point.

PK: You become like a child again. That’s what I always think of it as: you suddenly become like a child, and you have to constantly go back to questioning everything.

One thing I think about a lot, for instance, is how important it is to connect with people, and to have friendship and love and support because it is so incredibly unstable. But we started talking, when was it? 2014? And I guess I was doing somewhat well when I saw you.

You become like a child again. That’s what I always think of it as: you suddenly become like a child, and you have to constantly go back to questioning everything.

EW: I remember I was not doing very well when we first met. And I just remember being so blown away to meet somebody who had gone through what I was just starting to realize I was going through. I felt like you were so full of wisdom, and had so much knowledge, and really knew what was going on. I remember feeling so sick at that lunch and being confused and despairing. That was a really important time for me to be able to meet you.

PK: Now that I look back, I’m like, “Wow, how did I do all that stuff? What was I up to? How did I thrive through that?” I think that both of us as writers, and as people with chronic illness and disability, have ways of comparing ourselves to our past selves.

EW: Yeah, totally.

PK: I think part of the business of being a nonfiction writer and essayist, which is only part of what we do… Should we talk about that, too?

EW: We both like to pretend that we’re only practice essayists! Or not practice essayists, but temporary essayists who will return to being novelists.

PK: Yeah, we’re fiction writers. [chuckle] But I think it’s sort of our service. For you, it’s two-pronged because you actually… you have this other life, right?

EW: Yeah. I create a website and resources for people who are ambitious and living with limitations, which are often, with these people, chronic illness or mental illness. So some of those things are paid products, but then I try to make a lot of things that are low-priced or free. And then there’s the freelance-y writing stuff that can make some money, sometimes.

[laughter]

PK: Sometimes, occasionally. Yeah, that becomes an extension.

Service has been a part of my essays and my social media presence pretty much since 2011, I guess. Prior to that, I wasn’t that active on social media. And my really other bad health collapse was 2006… I wasn’t on social media talking about this stuff because I had this scheme to one day write a memoir, to write these essays. To be like, “I need help, and I wanna reach out to people; and maybe also me sharing helps someone, too.” There’s something very human about it. The work you do — my guess is that also helps you, and reminds you too, right?

The Asian American Women Writers Who Are Going to Change the World

EW: Oh, totally. “The teacher teaches what they most need to learn,” as they say.

So it’s May now, and the book is coming out in June. How are you feeling about meeting people who are going to have read this, and are reading it?

PK: The funny thing I started noticing the last few years is that people who would come to my readings were actually coming for something different. My readings would be about my other work, which is often Iranian-American stuff, like essays or my novels, which both have Iranian-American themes; but they would often actually be people who had no interest in that but have followed me on social media because of my battle with Lyme. They’d always be the people who stay at the end. It started happening a lot.

They’d be like, “Oh, you know… We might buy your book one day. We really just wanted to meet you.” And it would always have something to do with illness and disabilities.

So I’ve had this weird practice now because I think I have all these identifiers. It’s always like, What is the thing that will connect to Americans? That’s always been one of my battles since I was a refugee kid who came here. How do I relate to Americans? [chuckle] I never thought it would be illness and disability, but it always is. And I’ve talked to you about this before: in airports, having a wheelchair or cane or this oxygen concentrator now, becomes the subject of conversation and empathy more than anything. The thing that threatens to derail that is me telling my name, and where I come from.

That’s always been one of my battles since I was a refugee kid who came here. How do I relate to Americans? I never thought it would be illness and disability, but it always is.

Like I’ve said in the book, too, illness often makes me extremely white-passing, more than I am when I’m healthy. And so there’s also that funny mess too.

EW: Yeah. I feel like you’ve told me that a lot of times, you’ll meet various people who, if you happen to mention you have Lyme, will say, “Oh yeah, I have an aunt with Lyme” or “My cousin has Lyme.” I have a book about schizophrenia coming out next year and am often nervous about mentioning it to new people, but often I’ll get a response like, “Oh, my sister has schizophrenia.”

PK: It started to become comforting to me in a weird way, even though I have qualms about it, and I have a lot of misgivings about, why is that the thing? Why is that what makes you see us, and you can otherwise think we’re not like you in some way?

EW: It’s interesting to think about the different kinds of stigma that exist with different kinds of illnesses, or even illness in general. You’ve told stories about bonding with people at airports, but you’ve also had some really lousy experiences at airports.

PK: Yeah. I already have this defensive feeling in airports because long before the Muslim ban, there have been all sorts of problems. I only became an American citizen in 2001, and my family and I were on political asylum, so I had these white documents that I traveled with, and we were always pulled aside. “Flying while Muslim” or “flying while Iranian” has been an issue for a while.

But then there’s the stigma with illness, too. I think that actually has to do with the mental illness aspects, too, because I talk about PTSD. You’ve really been witnessing in full force my OCD, which is worst when I’m really ill. People are often like, “Oh, is it clinical?” I’m like, “Oh yeah. It’s really, really bad.”

If I just looked serene in my wheelchair, and I was smiling like Ms. Lyme — in this weird way, [the people I encounter at the airport would] be happy. But if someone pushes me and knocks me over when I’m in a precarious position, I might burst into tears; I’ll really be fragile about it. And then they’re like, “Oh, what’s wrong with this person?” Maybe they’re just hoping I had a sports injury.

EW: Something that we’ve talked about recently is how having a disabling illness can often be so debilitating to one’s self-esteem. That’s been something that I’ve thought about, and even written about a little. The word “disabling” can refer to being “less able,” and the idea of being confident is so often built around what we can do. And so those two things feel very related to me.

PK: It’s so true. I didn’t think of it that way, but when you’re confident, you can’t just be. It’s always about your productivity, and what you do. Common questions like, “What do you do?” And that’s just so American in so many ways, but it’s probably also human, like, “What are you doing on this planet?”

That’s a really, really, really hard part of the illness because I’ve always identified so strongly as a writer in things I do. I’ve always been seen as fairly dynamic and productive and energetic, but god, at 40, I kind of feel exhausted for the first time, or really in touch with my exhaustion.

I’ve always been seen as fairly dynamic and productive and energetic, but god, at 40, I kind of feel exhausted for the first time, or really in touch with my exhaustion.

EW: Yeah. We joke sometimes about how we’re practicing for being old. We’re going to be real experts. [laughter]

PK: I think we will be because that happens to people. You’ll start to see it happen in midlife, and then it goes to the end of their life. They start freaking out about every little thing that goes wrong in their body. But we’ve been doing this for years.

We don’t know what animals’ opinions on mortality are. We have some idea, right? We know that wolves in a pack, if they get injured or something, they might separate themselves. But what we do know is that human beings are awfully anxious about mortality issues.

Just the way like I’ve said to you, Let’s organize our next week for work stuff, that feels good, I think there’s a kind of harmful, macro version of that, which is like, “Okay, let’s organize our lives. And this is how it’s going to be. And these are what my dreams are.” I’ve done that for a lot of my life. I’ve achieved a lot of things I dreamed of, but I didn’t allot space for all sorts of things, like car accidents or illness or sexual assault or all those things that ended up really causing dramatic setbacks.

So I’m trying to be less of that person, even though it’s so deep in my wiring, because you just don’t know. I’ve become really good about living in the present. I’m actually horrified of the future now, especially because I’m having a rough time with it right now. But I can think, “Oh, I spent time with you. Food went down my throat. Oh, we had this moment of sitting in your backyard, and the sun was out. It was so nice.” Little things become so incredibly precious for me, because you and I both know that feeling of entire days spent in incredible horror, where you’re trapped in your own body and you can’t get out.

EW: There’s something that really disturbs me sometimes, and I’ve actually never voiced this thought out loud, so who knows what’s it’s going to sound like when it comes out. But I don’t know if you are familiar with this kind of… very middle-class, white woman cultural phenomenon that’s like, “an ordinary life, the beauty of an ordinary life.” Are you familiar with this?

PK: Yes. Oh, yeah.

EW: I feel like the kinds of things you just said sound like that. It’s a little bit like, “Oh, we enjoyed the beauty of our ordinary day.” But when it’s really taken seriously, it’s a lot harder than making a photogenic muffin and putting it on Instagram.

When it’s really taken seriously, it’s a lot harder than making a photogenic muffin and putting it on Instagram.

PK: I think you and I both often get applauded for being really vulnerable about illness. You know I’ve talked to you about how empowerment rhetoric is hard for me, whether it’s in minority culture, or disability culture. On the one hand, I love it, and it brings me out of a certain place. But on the other hand, it feels like it’s so alienating [to say], “Yeah, we’re sick, and we feel great! We’re kicking ass!” Because it’s also, “Wait, hold on. I’m not yet kicking ass. Wait a sec. I want to, but I feel like it’s hard to know what the strategy should be.”

EW: This is, to me, related to the human need to come to the realization over and over again that we lack such control over our lives. I think this is not necessarily unrelated to having OCD, or in my case, being obsessed with planners and making these long lists, and being obsessed with organization. Back when my major psychiatric diagnosis was bipolar disorder, I once saw a then-new psychiatrist; I came in with my giant Filofax, which was filled with lists and charts and things. I mentioned that I really liked to carry it around with me everywhere, and I really felt a need to have it. And she said, “This is actually really common for people who are dealing with psychiatric illness.” Which made a lot of sense to me, because if your body is so out of control, and a lot of your mind is so out of control, and there’s so little you can control, then why not try to control the things you can control?”

PK: Yeah. PTSD is the one that really threatens it. You’ll often remind me to, say, “Go make a list,” or something like that. As you’ve probably noticed over the years, you always tell me to do that, and I don’t. And I’ve actually really thought about this issue, about why I don’t do it more. This whole book was composed mostly not through journals, but through emails that I would send to people. Because I don’t delete any emails. [chuckle] I have one of those crazy inboxes.

But I think one of the reasons I am so scared sometimes to keep a planner or record things is because of these issues related to post-traumatic stress. I feel like it’s almost like this weird, magical thinking — that if I put it down there, I’m forced to be in a cycle that I’ve been in before. I was really thinking about this a lot today, where I was like, “Why can’t I do it? I’m a writer, I can just put this down in a list.” I have all of these scraps of lists, but I’m terrified of them being material in a way. My spirit wants to say, “This isn’t really happening. I’ll get over this soon, and I won’t be back into these horrible times in my life where I was just drowning.” And I want to say, like, “I have the tools now, and that won’t happen again to me,” but I feel like I’m a little bit there right now, and I’m scared. I have a lot of fear. I see you as someone who doesn’t have a lot of fear. I don’t know how to explain that, but I feel like you’ve conquered some of the fears that I still feel like so much of my existence has become defined by.

My spirit wants to say, “This isn’t really happening. I’ll get over this soon, and I won’t be back into these horrible times in my life where I was just drowning.”

EW: Something that you’ve really helped me to better understand and navigate is the literary world. I feel like I had such an idyllic view of what that world and community were like before I started entering more deeply into it. [chuckle] And it’s kind of sad, in some ways, that it would feel that way, but you were just saying to me recently that the friendships that you make are actually very central, and not necessarily the lagniappe to the real things, which are the laurels and whatnot of that world.

PK: Well, that’s like New York media and the New York literary world, really. It’s like the problems of capitalism in America are so within that culture, even when people don’t want it; but it’s the individuals that make it good. I keep seeing this stuff. I see a lot of millennial writers write things like, “Well, it’s good to have friends who aren’t too supportive.” And I just want to be like, “Really? Because what we do is really hard, and there’s no… There’s never too much love or too much support for writers, ever.”

Then, add all of the other layers of isolation of being, of other cultures of illness and disability, of having… Even the sexual identity thing, we can talk about. There are so many different marginal identifiers — so to think that support will be threatening to me, and love will be threatening to me? That’s crazy.

What we do is really hard. There’s never too much love or too much support for writers, ever.

EW: Yeah, like we really need to feel more alone in the world. [chuckle]

PK: I will always be honest with my friends, but I will never consider being unsupportive of them. I am really loyal, and I feel like I have friendships for life, unless someone really pushes me out. But there’s no chance I would have continued to be a published writer since my first book if I didn’t have really good friendships, of which you’re the peak to me. Because a lot of my friendships were like, “Oh, I could only relate to people with one side. This is my friend I can be this way with. This is my friend I can be this way.” And I think that was the magic of us, that there’s so many things we have in common.

EW: We’ve had so many interesting psychic connections.

PK: Yeah, where we’ll often be like, “Wait. That thing you said — did we talk about this already?”

EW: Yeah, or like the Market Guide for Young Writers, which we both used and read as kids. [laughter] I was so happy when you sent me the photo of your copy because I remember that exact cover, and the color of it, everything.

PK: It’s so crazy that we had that in elementary school. Or that the Californias we grew up in were different parts of California but were somewhat comparable. You brought up vitamins, and I could just say, “Oh you know, Costco. That was a Costco brand that our parents bought.” Or our attraction to certain indie or alternative cultures as a reaction to the rest of our school, or the idea of normalcy, the idea of being a misfit like in the ’90s and onwards. We were kind of born in the right time.

That’s why my whole book tour and all my interviews and stuff like that have everything to do with friends. All of that is just… friends. I don’t have any more desire to do things outside of friends. That’s what the literary world gave me, really. Not riches, not anything else, but just good friends, and that’s a lot.

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