Click to launch book reader: here

Saif Interview Transcript

Transcribed by Nureena Faruqi

Thu, Jul 27, 2023 3:44PM • 1:34:38

NUREENA:
All right. So it is July 7, 2023. The time is 3:31pm. My name is Nureena Faruqi and I am conducting a remote interview for the SAADA Archival Creators Fellowship 2022 to 2023 on the ways disabled and or chronically ill South Asian Americans find and create communities via virtual and digital spaces.

Thank you so much for being here today! If you feel comfortable sharing, where are you currently interviewing from? What's your current location?

SAIF:
Yes, I'm still in California.

NUREENA:
Great. And how old are you?

SAIF:
I'm 34.

NUREENA:
Okay. And I'm going to move into some basic getting to know you questions. As I said before, you can answer as generally as you want.

SAIF:
Right.

NUREENA:
Where were you born?

SAIF:
I was born here in Southern California. I think I might have noted in my email, I was born in a little town called Artesia. It's called Little India now, or I think it has been historically. And yeah, I was born here. And it’s a very small town. The hospital I was born in doesn't exist anymore. But I tend to tell people I just- I was born in LA, as in broader LA area.

NUREENA:
And what about your family? Well, you answered this in the email, but for the interview.

SAIF:
Yes. Well, my folks are North Indian. So my mother's from the MP- from Bhopal. And my father is from the UP. He's from a small village outside of Gorakhpur, like I said, and yeah, my siblings were born all over the place- my brother- next one in line. I'm the eldest of four. He was born in SoCal as well. I don't know if he was born in Artesia, actually. I’d have to ask my folks. My second brother is the second youngest. He was born in Alaska. He moved to Alaska after I was born in California, a few years later. And then my sister, she's the youngest. She was born in Korea because my father was stationed there.

NUREENA:
What would you say community looked like for you growing up?

And so you can include a community as far as like, your parents’ community that you grew up around, or community that you consider your own growing up, friends in the area. What did that look like for you?

SAIF:
Um, well, we didn't have much of a community growing up in my experience. After I moved to Alaska when I was five, it was us in Alaska, and there were very few South Asians there at the time. We had a Hindu neighbor that lived next to us…Indian neighbor. But other than that, I don't believe we had many South Asians in the area. And Muslims...there were some. There was like, a local mosque or masjid. And um I think toward the end of my time in Alaska, it was housed in a church. The church had become defunct and we rented it out or something I forget. Very beautiful church, but yeah, there weren’t many Muslims or South Asians and my parents tend to gravitate toward other North Indian/ Pakistani Urdu speaking Muslims, right. Sort of is– are the circles my parents run in.

They’re very few of those there. And then we moved to Alaska or sorry- not Alaska– Korea after Alaska. And in Korea, there were- there were plenty of Muslims there. They were primarily young men who’d converted to Islam. My parents didn't speak Korean. They never bothered to learn Korean and there was no mosque in our town, Taegu. Back then it was spelled with a ‘T’ now it’s spelled with a ‘D’ for some reason, I believe. And so we would go to a mosque nearby in Pusan. Well, the spelling of that city has also changed, but I think it's historically been spelled with a P but now it's spelled with a ‘B’. Have you seen that movie, Train to Busan? The Korean movie?

NUREENA:
I actually haven’t.

SAIF:
Oh you haven't?

Okay, well, if you don't want to cry, then maybe you don't want to watch that movie. It's a very sad but very good movie. Anyway, yeah.

NUREENA:
(Inaudible)

SAIF:
You don’t like sad movies? Or you don’t cry during movies?

NUREENA:
I don't mind crying at movies.

SAIF :
Oh okay. Well, I'm a man, so I’m not allowed to do that. Or I can do that but can't tell anybody about it.

And, yeah, there were- there was like one South Asian lady that we knew somehow in Taegu. She was older than my mother so my mother would call her Appa or Baji. But otherwise, we never really had community growing up. And then I moved to Colorado, like after Korea, and there was a bigger Muslim population there. I was the only brown kid in my entire school. And yeah, so I don't remember really growing up with a sense of community. We never had like; family around, you know, because most of my family was in California.

NUREENA:
Yeah.

SAIF:
Of course, we did- I suppose we had a community in SoCal in the first few years of my life, but after that, not really. It wasn't until I went to college that I started encountering South Asians and Muslims in large numbers. Up until then it was kind of just my parents, me and my siblings. And then, you know, some South Asian Muslims here and there, but that's basically it. Yeah, we didn't really grow up with a sense of community.. I never really felt that either. You know, so-

NUREENA:
And so remind me when you went when you arrived in Colorado, that was for college? Correct?

SAIF:
Oh, no, that's half of middle school and then high school. So I moved to Colorado when I was 12. And I left- when I started- when I was 16 or 17- Then I moved- no 17 right- Yeah then I moved to LA for college. So I was in Colorado for about six years. Colorado, like I said- it did have a bigger Muslim population. I don't know if there were many South Asians around. In general, I actually can't tell how many South Asians were in Colorado Springs at the time. But it was extremely white. There was like snow. And then white people. They were- you know- both white things. And yep, very, very white town. Very few people of color. My high school I think it was like me, and like one like… Korean girl and then like, two Black kids. And that was it. For my class of like, three- how many people were in my class? 350 or something like that. 360.

NUREENA:
Oh, wow. So definitely a very small portion of you all right. Okay.

NUREENA:
Moving on, could you describe to me: what current conditions- just conditions, disabilities, illnesses, however you want to describe that- do you live with?

SAIF:
Right. Well, I have a few health issues that I have to monitor. Primarily one is my autoimmune condition like I mentioned.

NUREENA:
And do you feel comfortable naming what the autoimmune condition is?

SAIF:
Yes, it's called Ankylosing Spondylitis. That's two words. And ‘AS’ for short, classified as a species of Spondyloarthritis, I believe it's called. And it's akin to a- it's a rheumatic condition. So it affects my joints, primarily also my eyes on occasion. And my immune system basically attacks my body, which results in a lot of inflammation. And inflammation is no bueno. So it causes a lot of pain and reduces mobility in my joints. In my eyes, it can erode my vision over time if I don't treat it right away. And also has long term effects as well. So like I might have mentioned, it causes fusion of the vertebra and the joints over time. So older folk who have it now because they didn't have access to these newer drugs that have been developed in the last, say, 20-30 years, they tend to exhibit a lot more fusion in their vertebra and their spine, which means that they permanently lose mobility in their back, and that results in what's called Bamboo spine when you're sort of hunched over and can't stand completely straight up, because your, your bones are literally fused together. So the condition, for some reason, bone growth occurs, excess bone growth, across joints. And once that happens, then you permanently lose mobility in the area, and that's very bad. But there's newer drugs, they're very helpful. They treat the underlying problem, the immune system response, and stop the inflammatory process. So folks who are on these medications- they tend to not exhibit as much fusion over time, but you'd have to take these drugs regularly. So I myself have minimal fusion in my right pelvis area, hip area, so I can't rotate my leg fully out in that area, compared to my foot ,sorry not my foot- my leg- compared to my left leg, which I can rotate out fully, which is not the end of the world like I’m not going to use that sort of range of motion every day. I rarely use that range of motion, so it's fine. But I think- I might have mentioned this also but people my age do exhibit fusion and it’s really not good.

Because you know, once you lose, or once you experience fusion, you can't move or use that joint anymore, or you-you basically lose that flexibility or mobility. And for a young person, I think that's terrible. I think that's probably one of the most terrifying aspects of the condition, not just the chronic pain that results from the inflammation. It's also the potential long term effects, reduced mobility, right? And I'd rather not be confined to a wheelchair or not be able to like, bend my head or twist my head left and right in my old age, because some people do have fusion in their neck right in their spine, and they can't turn left or right. Which is a damn shame. So for folks who have AS, they have to take these medications if they want to minimize the risk of fusion, especially. But there are plenty of people who don't take these medications and some choose to treat the condition without drugs, I would not advise that if you can help it, and you have the condition, and many of these people do tend to exhibit fusion because that can't be the way you treat that by changing your diet or exercising.

NUREENA:
And do you- does this condition result in chronic pain daily? Or is it something that comes up more when you have a flare up? Like how does that look like for you? Or how does that manifest for you?

SAIF:
Right, well the condition does result in chronic pain and you know what chronic pain means- it's going to vary or change over time.

NUREENA:
Of course.

SAIF:
And that means everything from no pain to the other strain, which is a very serious flare up, or episode in which you're experiencing very intense pain. So people with AS tend to experience pain and inflammation in their lower back, their pelvis or hip areas, their upper thighs, shoulders, neck area. Some people experience pain in their extremities like their feet, and I suppose their hands- my pain is typically limited to my lower back-

NUREENA:
Ok.

SAIF:
- And pelvis and hips, also my shoulders. And sometimes it's really bad. My last very serious episode, I think I mentioned was no, maybe I didn't mention this– it was in 2017. I had just returned from South Africa. I was working in South Africa, I'm in New York, my pain is out of control. And it's very very serious, it's completely debilitating and can't even move because if you move slightly the wrong way then that shoots this sort of wave of very intense stabbing pain through your body and it's really terrible. It's very frustrating, very lonely. Being in that sort of intense pain and it’s very exhausting as well because your body has to- it scrunches up basically, you're sort of constantly flexed, your body's constantly - all your muscles are contracted, to make sure you don't move in- in the wrong direction slightly, resulting in this pain. Very very exhausting.

NUREENA:
I was just gonna say, that's- that sounds very exhausting.

SAIF:
And yeah, so that's extreme, but I haven't had an extreme episode like that in many years or since then, because I've been taking my medication more or less regularly since that last episode, but I never want to experience it again. I have to take my medication every month. If I'm on my medication then I'm typically okay. I don't experience these intense episodes.

But historically I was very lax with my medication- I didn’t take my condition as seriously and that meant that you know, maybe once or twice a year I would have these very serious flare ups and then I'd be out of commission for like a week or something like that. Bed ridden and no bueno. I think the- my second to last episode- flare-up was in law school, my first year. Yeah, and I was sort of out of commission for a week. And then the second- my last one was 2017 a year or so after I graduated from law school almost two years. But since then, I've been okay. But in between, right in between no pain and very serious, intense pain. They're sort of like this intermediate area or zone. I do feel or experience chronic pain. You know, periodic pain, and typically experience it mostly right after I take my medication or right before you know- because I am due for my next dose. And then my back starts hurting again, I tend to be stiff in the mornings. And there's also this fatigue component. And that's harder to assess, or realize, because I guess I'm just so used to being sore and stiff. You know. But people with AS also tend to exhibit a lot of fatigue.

NUREENA:
And that makes sense to me. Pain often causes fatigue, especially if your body's having to hold itself in a certain way.

SAIF:
Right.

NUREENA:
I had a question. And- oh, you were talking about law school and having either one or two of your episodes during law school. And I know law school in itself is very intense. So wanted to know more about that, like, how were you able to manage that at that time?

SAIF:
Oh, well, I didn't manage it my first year because I was studying 24/7. And then I had my episode, I think it was like, end of first year, toward the end of my first year, what would happen is that I would often have these periods when I would go all out, right- for an exam or finals or whatever. And then, after I concluded, or I finished my exams or whatever, within a week or so, I would have like, an episode. And I was told that high amounts of stress will trigger my condition or pain –will result in a flare up. And [inaudible] that happened almost like, like clockwork.

NUREENA:
After your exam period?

SAIF:
In those years, yeah. Yeah, I would like go all out, study. And then finally, I'll take the exam, I would relax. And then you know, a few days later, I'm in this terrible, terrible pain. And, yeah, that was no bueno. How do I manage? Well, like I said, I typically manage by taking my medication. My medication– is the type of medication called a biologic. Now biologics are synthetic elements of your immune system that are manufactured or made like in a lab. They are supposed to mimic aspects of your immune system, and they will alter the function or activity of your immune system when you take them. So they're basically proteins or enzymes that are synthesized by the manufacturer, the drug maker.

NUREENA:
Okay.

SAIF:
Which means they're very expensive. They're difficult to obtain, you can't get them at your normal pharmacy or even fill them at your normal pharmacy, you have to get them mailed typically to you. And these medications, they're very inconvenient because you have to refrigerate them. If they warm up to room temperature, then you have like, a few days to take the medication and you can't put it back in the fridge. Basically, the protein will denature or the enzyme will denature if it gets too hot or too cold. So there's the temperature aspect, there’s the fact that you can't get your local pharmacy. You have to get it shipped to you or mailed. There’s the fact that you typically have to be at home to receive the package, right? Because it's being dropped off in a refrigerated box, a cooler- what do you call em?- cooler boxes that have ice or not- ice pads- these frozen cooling packets inside. And that typically requires a signature and then if you're traveling that's a huge problem because you can't get medication on the move.

NUREENA:
Yeah.

SAIF:
So if you're traveling and you, for example, know you're due for your dose in like a week or two weeks, you're going to be gone. Let's say for a month. That means you had to bring it on vacation with you. Otherwise you'll be late by two weeks if you wait till the return. And I take my medication once a month. Some biologics- you take ‘em every two weeks or more. So my current medication I take once a month. In those situations, I have to find a way to get an extra dose or get my dose or take my dose with me wherever I'm going and that's a ordeal because I have to make sure my medication is cooled throughout right because if I just stuffed the medication in my bag on my flight, they'll let me take it on my flight or if I check it in– well actually, you can't check it in. You can't check in your medication because the cargo bays of these planes get very cold. So you can't do that. You have to check your- check your medication in with you in your carry on. But then the medication will go down to room temperature. Unless you like carry it- like in a bag like a lunch bag with like cooler packets in it. So that when you arrive at your destination, you can immediately throw medication into your fridge. That's typically what I will do if I'm in a situation like this.

NUREENA:
That's a lot to juggle.

SAIF:
Yep. And also, like I said, the medication is extremely expensive. So if you don't have insurance, there's no way in hell you're getting this medication unless you're like a millionaire. Because the medications are like, I mean, depending on the biologic, like four, five, six, seven, eight- ten thousand dollars a month.

NUREENA:
No, that is a lot!

SAIF:
Yes, very expensive. But the first biologic I was on. That was previously I think, seven…six/seven thousand dollars. And now I think it's a few hundred dollars. I think because of competition, or I think they recently lost the patent. So there–now there are competitors- or what's it called- biosimilars on the market. But the medication I'm on now, I believe it's still around six, seven thousand a month. So you need insurance. And in many countries, insurance doesn't cover that medication. So when I was in South Africa, my- did I have insurance over there?- So I didn't have insurance, but healthcare is free over there. But unless you have private insurance, you won't have access to this medication. And of course, insurance you pay for so it's unclear to me how many people in South Africa who have this condition are actually taking these biologics. But here in the US, I have always had insurance that covers my medication. Yes, I'm very lucky.

NUREENA:
Just thinking about these risks of: either your medication becoming compromised because of temperature when you're traveling or risking losing a dose.

SAIF:
Yeah, it’s no bueno, because yeah, because if your medication goes down to room temperature, then you can still use it. It's just that you need to use it as soon as possible, because the more you leave it out, the more the biologic denatures, I think, is how it goes. So I think the box will say, “Hey, you can use it within seven days but you’re advised to use it as soon as it goes down to room temperature.” And if you're not due for a dose, then you're forced to take it early, I suppose. But the problem isn't really with short term trips, right? You can take the medication right before you leave, or when you come back, you could be a week or two late; that happens. The problem is if you're traveling for a long time, like you're gone for a few months, or in my case a year and I was working in South Africa-

NUREENA:
Right.

SAIF:
- that’s- then you can potentially get your medication shipped to you. And when I was in South Africa, I was talking to my rheumatologist in New York and she was like well, you could go through UPS and they have this new service now that allows you to ship medication in cool storage and this and that and I never managed to arrange for that to happen. So when I was in South Africa, I did not take my medication for about nine months.

NUREENA:
Oh, wow.

SAIF:
Yep. And that's what resulted in my last episode. The very serious one.

NUREENA:
Yeah. Yeah. Thank you for sharing all that. I know that’s pretty vulnerable to share.

NUREENA:
Okay. Let’s see- I'd like to know a little bit about– you've talked a lot about how living with this affects your life on the daily- whether, you know, having to plan around this medication, these flares you've had to deal with in the past, you know, really staying on top of it-

My first question is, what is your first memory around discovering this condition of yours?

When did you realize you had this condition?

SAIF:
Right. Well, for a lot of boys especially, they find out when they enter adolescence. So this condition primarily affects men- affects men or boys more than it does for..it does women overall or girls and it's typically young boys- preteens right around when they start puberty. That's sort of when the pain and the symptoms manifest themselves. It's sort of like, not sure if you're an X Men fan, but in the X Men in the Marvel Comics, if you have the X gene that gives you your mutant powers that typically is manifested in your adolescence, right?

NUREENA:
Yeah. That’s a really good analogy.

SAIF:
Yeah, sort of like that. So that's when I found I found out when I was like, around elevenish. And I found out because I couldn't run as fast or as long as other kids. Because back then I was very physically active. I think I might have mentioned this- I was- I loved spending time outdoors. I loved running and playing soccer, especially. I played soccer for many years as a child. I played- I continued playing soccer when I moved to Korea, I’d play army soccer, or soccer arranged, you know the soccer league arranged by the US government on these army bases. And yeah, I loved soccer, it was such a huge part of my life. But then once this condition manifested itself, I was feeling all this pain, all this fatigue, I wouldn't be able to run as fast or as long as I used to be able to. And I very rapidly became very tired. I'd become very sore. It was the pain itself that would inhibit me from running as much. And that sucked because I couldn't keep up with other kids, which means I couldn't play soccer- the end. Right? So basically, my soccer career came to– my illustrious soccer career came to an end when I was around eleven, twelve.

Basically, when I was 12, yeah, I was able to play until I was 12. Then we moved to Colorado. And then after that, I never played soccer, organized soccer or club soccer ever again. And, yeah, it was no bueno. I didn't know I had this much pain, all this pain, all of a sudden, no one knew. I think I was diagnosed with AS in Korea. My mother tells me it was Colorado, I was diagnosed and I don't think that's what happened. But you know, maybe she remembers, I don't. I remember I was diagnosed. I remember the doctor- this white man with glasses, he told me that I had what's called HLA B 27, which is a gene that people who have AS typically have. Just because you have HLA B 27, doesn't mean you have AS or the condition. But people who do have the condition, like 75% of them have this gene. So there's some sort of connection. And he sort of drew the chromosomes out and said, “Well, this gene is on this chromosome” for me on a piece of paper.

And yes, I have this- It's an autoimmune condition, like I mentioned, and it's congenital. It's- I was born with it. It didn't manifest itself until I became an adolescent. And there's no cure for it either. Just some chronic condition I have to take care of for the rest of my life.

And yeah, I mean, I guess I didn't think much of it at the time. I was just a frickin’ kid. Right? So I didn't realize what it meant to have a lifelong chronic condition. I think for me the most- the thing I actually was very sad about was the soccer. I couldn't play soccer anymore. That was actually very sad. Even the pain was, even though it was bad and terrible and it sucked- I don't think I realized how bad the pain could be or how long it would last or how frequently I would experience the pain. I didn't understand that as a 12 year old. I didn't understand not being able to play soccer anymore or keep up with other kids. That definitely made me sad. But I also didn't realize that for many years, because for many years, I was like,”Oh, I'm fine. I just need to,you know, take another shot at soccer.”

Right? I thought once I, you know, try my hand at soccer again- I try out for a team or I enrolled in club soccer or whatever that I would be just fine. But the next opportunity I had to play soccer was in high school- my sophomore year, I believe it was. I tried out for my soccer team in high school. And I thought I was gonna be fine. I thought I was going to be able to make the team because, you know, I thought I was a fairly good player. I was very active. You know, before I was diagnosed. I was extremely passionate about soccer. I loved it. I was really into the sport. But then when I tried out, at the tryouts, I remember immediately realizing that I simply would- could not keep up with other kids. Other boys trying out for the boys team. And I think on the second day, you know, maybe early in the morning on the second day of tryouts- I think it was two days long. I was just pulled aside by the assistant coach for the team and he said, “Hey, like, thank you so much for coming, but we're not gonna have you make the team or whatever.”

That was disappointing because I literally thought [laughs] I was gonna make the team. And, you know, it might have been a skill issue. Sure. I think it was primarily because I literally could not keep up with other kids. It was immediately apparent, and I was like, “What the hell's happening?” And that's when it sort of hit me. Oh, shit, like, this is actually rather serious. And something I can’t pretend isn't a thing. And this was before I was put on medication. So I was experiencing the full brunt of the condition in my daily life.

NUREENA:
I was just about to ask if that was more of like, a wake up moment for you. That this was something that was going to continue to affect you.

SAIF:
Yeah, maybe? I mean, how old was I at the time? I was probably 15. Yeah.

NUREENA:
What about your family’s attitudes, behaviors and language around your condition? Like, were there certain belief systems they had about your condition or certain ways they behaved? Said things to you about it? What would you say that looked like for you? As you navigated this?

SAIF:
Oh, yeah. So that's a big part of the story. Because my parents, I think they did not want to acknowledge that I had this condition, I think they wanted to pretend as if it was not a thing. Because early on, they didn't think it was a big deal. They minimized the pain or the effect that it had on my life. And they basically acted as if I didn't have the condition. They didn't take it seriously at all. And I think it was, in large part, because of shame. Right? You don't want to have a chronic condition or you know, that no one can pronounce. And you don't want people to know about that, I think is what I got… that’s very clearly was the impression I got from my parents as a child. Don't talk about it, don't tell people about it..blah blah blah. . So for many years, I did not tell anybody outside my family that I had this condition. Though, nowadays I have- I do, I’ve told some people outside of my family now. So now all of my close friends now know.

SAIF:
Yeah, so my parents, I think they did not want me to have this condition. They didn't take it seriously. They didn't understand it. But they also never probed into it. They never inquired about it. They never wanted to learn. And I think what they wanted most was to basically go about life as if it wasn't a thing.

So I was being told by my doctors, hey, you have to take some of these medications that you can't get easily. They're very expensive. They're not oral medications. You don't take them by mouth, you actually inject them into your body, et cetera, et cetera. My parents were like, “Oh, no, it's okay. Just take Advil. Just take Tylenol when- as needed,” which is precisely what you can't do with this condition. You can take Tylenol and Advil all you want, but that's only going to temporarily relieve the pain and swelling, if at all…

NUREENA:
Right.

SAIF:
That’s not going to address the underlying autoimmune response, right? It's also not going to address the long- longer term effects of the disease, right? So you can take Advil every single day but you’re still gonna experience fusion over time in your bones, your joints, if you don't stop the inflammatory process, which is what the drugs do– the biologics I've taken. What they'll do is that they will- they're basically immunosuppressants. That's right. So they suppress my immune system, which means that my immune system doesn't go haywire and start attacking my joints, which means no inflammation, which means no pain, right? But it also means immunocompromised all the time. Yeah, but you have to take these medications, right, if you want to stop this inflammatory response, like I said, over the counter medications don't do that.

And I think for many years, my parents like, “oh, just take that shit”, you know, and that really made me upset because I was like, this is actually a real fucking condition, I’m in a lot of pain, these drugs, over the counter aren't going to do anything.

You know- and even when my doctor is prescribing these medications, the biologics- and told me to take them- you have to take them regularly, you can't just take them once a year or twice a year, you have to take them regularly. So you can constantly suppress your immune system, and constantly inhibit the immune- autoimmune response that results in the pain, inflammation. But my parents- even when I did have access to these medications- I don't remember taking them regularly at all. So I started taking my medication- my biologic medications in college. And even then, my parents discouraged me from taking the medication too often. They were like, “Oh, you can take- you know, one dose, you know, and then, you know, if you experience pain, maybe down the road, like a few months later, then you can take it again.” Right?

So they were convinced you could take the medication- the biologics themselves as needed. And I was like, that's not how these work. You know, once you start experiencing pain, then it's kind of too late.

NUREENA:
Right.

SAIF:
You're gonna experience the pain and you're gonna take the biologic- the biologic takes like a few days to a week to like, kick in. Right? Because it alters the behavior of your immune system. But- you still are gonna be experiencing pain and reduced mobility for like a week or two. Like, I mean, if you're taking your medication once a month, and you are delaying your medication, let's say by a month or two— then you know, for the majority of time, you're going to be in pain, because you're not going to be taking medication regularly.

And of course, the mess of the condition itself sort of varies, my pain varies over time. So sometimes my condition will sort of be in- what's it called- it'll be dormant. So I won't really experience many problems, or the pain will be so subtle and dull- experience dull sort of pain or soreness, and fatigue, but it won't be acute and therefore more tolerable and therefore less detectable. Right? Because I'm so used to like- always being sore and stiff. So unless I'm like- in acute pain, then I don't think it's very remarkable. So it's hard sometimes for people who have this condition to like, realize, to what extent their condition is affecting them at any given time. Right? Because unless you're bedridden, or you're experiencing very sharp, intense acute pains, and it's kind of like, okay, well, you know, I can still go to the grocery store, go to school, go to work. But I'm in pain, and I'm tired, and I just don't realize it, or I realize I'm in pain, but I don't realize- I don't know if it's the condition or not. Maybe I'm just tired because of work or maybe I'm- you know, worn out because of school or something like that. It's hard to establish whether these more generic symptoms of soreness and pain and fatigue can even be traced to the condition at any given time. So for a lot of people who have the condition it's also like, wait a second, like, am I just being lazy? Am I actually tired because of work? Or is there something else going on in my life that's causing me pain or fatigue? Or is it my condition that is acting here on my body?

NUREENA:
Do you feel like your family's attitudes played a role in that too?

SAIF:
Oh yeah.

NUREENA:
Of well, to be able to trace back to whether it's your condition-

SAIF:
Oh. I don't know about that-

NUREENA:
- Or your opinion on your condition?

SAIF:
Oh, yeah. Well, they definitely influenced my own perception of the condition because— because they didn't take it seriously- I didn't take it seriously either. I was just like, oh, it's not a thing. I'll put it — you know, I'll go about my life as if I didn't have it, you know, sometimes it'll cause me a problem or issue and then I'll pop some Advil. But for the most part, like, I can go about life without thinking about it too much, which is what ends up happening, which is why the early years- not in the early years- in my adolescence, right? Middle school, and then high school, I would experience these episodes and pain a lot. In college, I had very serious episodes, intense pain, I'd be bedridden for days, my roommates were like, What the hell is happening?

And then I started taking my medication, my junior and senior year with these more serious biologics. And those really helped, but again, you have to take them regularly every month and because my parents were so cavalier about the condition, they were so ashamed that I had it- so secretive about it, because they didn’t want anyone finding out, I myself didn't open up to people about it much. Despite having a rheumatologist on my own who treated the condition, I wouldn't see him very often, or I wouldn't keep him in the loop or to update him when I had, you know, I was in pain or whatever. I would reach out, I tended to reach out to my rheumatologist specialist, only when I had very serious pain or I had an extreme episode.

By then it's kind of like too late, like you're gonna be in that much, you're gonna be in that pain for like, a week, you know.

To be in a situation the one thing you do is, you know, take your next dose of the biologic and then in the short term, take some- you know, very strong painkiller which I would sometimes do.

But yeah, because of my parents attitude towards this- I myself didn't take the condition seriously for a very long time. And then in the years since- it's actually been a source of like, a lot of bitterness and resentment because I'm just like, Why didn't my parents like take this more seriously? Because if they took it more seriously and I would have taken it more seriously. If I would have taken it more seriously then I wouldn't have suffered as much. Also taking the medication- starting the medication— I started in college when I was like 19. But that was twenty- 2008 okay, I think was when I started to see my first rheumatologist ever. Okay?[laughs]

I don’t think I even had a rheumatologist beforehand. I just would see my general practitioner. And 2008 was seven years or so after I started experiencing symptoms, because I started experiencing symptoms like halfway through my time in Korea. I think I was diagnosed when I was 12, or 13. Right. So it's been like five, six, seven years at this point of me having this condition and not treating it properly.

And my impression is that, from what I have gleaned, since- these biologic drugs were available, and indicated for children right? There was pediatric indication for these drugs, they were authorized for pediatric use as early as ‘96 or ‘98. Right?

Which meant that for the entire duration of my condition, I could have been treated by these drugs. But my parents, I don't think ever took me to a rheumatologist. Or if they were advised to put me on these medications they refused.

It was only until I went to college when I finally took my health into my own hands that I’d go, oh, shit, like these medications are available- let me try them. I started experiencing relief. The relief was intermittent, right? Because it took me a long time to realize wait I actually have to take medication every month. Back then I was on a biologic that I had to take the medication every two weeks. If I didn’t take it every two weeks then, you know, I would miss my dosage. That would be bad. Now my sister medication is very similar to the first one I was on. My second biologic. And I take this one every four weeks. And this one I've been taking more regularly since I switched in 2018, after my last very intense episode, upon my return from South Africa. So in short, I could have been on these medications for about six more years. My parents did not put me on them, nor are they seeing a rheumatologist during this time period.

So yeah, now as an adult, I don't talk to my parents about my condition, unfortunately, because I don't trust them to advocate for me or have my best interest at heart because they're so cavalier about it. And I've told them about this and they don't like it. And I don't think they even realize to what extent they really hurt me by being so contemptuous and cavalier about my condition. To such an extent that I formed some of the- a lot of the same shame that they had, right, I sort of inherited that. And that is, in large part precisely why I probably didn't take the condition very seriously myself, and didn't take my medication regularly for many years, even though I had started it or finally had access to it. Even though I had finally taken my health in my own hands. I was like, oh, you know, I'll take it whenever to myself. Yeah.

NUREENA:
I'm interested to hear more about- because you know, you grew up not talking about it, you grew up internalizing the shame.

SAIF:
Yep.

NUREENA:
And you slowly started talking about it more. And just curious about your journey around that, like, how has it felt?

NUREENA:
So a two part question: How has it felt to open up about this condition more to trusted people? And, two— I also want to hear more about your journey. We've talked about this outside of this around IDing as disabled or not.

SAIF:
Right, right. So your first question was, how–

NUREENA:
I'm gonna type it in the chat.

SAIF:
Alright. Yes, opening up to people. So let's see here. I started telling people about the condition when I was in law school. So besides my immediate family, no one knew. And then I think the first few people were two of my best friends at the time. It was very surprising, because I remember telling one- we were in a restaurant at the time, and I remember simply just telling her across the table. It was late at night, and I remember we were bathed in like this reddish light that was inside the restaurant– it was like this dimly lit restaurant. I remember telling her about this condition, and you know, I was sort of like telling her about it and telling her about how serious it was and all of that. And I still remember this- she sort of reached across the table and like, put her hand on my arm and was like, “Oh my god, Saif. I'm so sorry that you had to go through all this,” or whatever. And she's looking at me.

I'm looking away- looking at the window as I tell her this, you know, this spiel about my condition. And I was confused. I was like, what? [ laughs] .

Like, why is this woman doing this? You know, but the reason she was doing that was because she was showing me compassion, right, she was sort of stroking my arm and sort of changed the tone of her voice and she was looking at me in the eyes and all that. And I was very taken aback because no one had done that before. You know, actually stopped and acknowledged the condition, expressed sympathy and given me compassion. That was very striking. I was very confused by that. And I was like, what? So that was very powerful, that experience. I’ve told other people about it- I have not experienced the same sort of compassionate response, but you know, I tend to get some recognition or validation which I like it-that's good. Yeah, but yeah, and now that I think about how many people have I told that know about this condition? Not very many I think let's see 1,2,3,4,5,6,7.

I think that's about it. Yeah. Oh, no. Eight now. Yeah, I think a few friends from college. Few from law school. Few other people that's about it. Yeah. So I'm still rather secretive and private about it. Oh, nine. I omitted one friend from college. Yes. How has that been? I mean, it's been good I guess. But I don't think it's really changed my life because many of my friends don't actually ask me about it. Ones that I’ve entrusted with information.

NUREENA:
Would you want them to?

SAIF:
Yeah, I guess I wish I would want some of them to- you know, check in with me maybe more often about it, if at all. Actually, I have some friends who themselves have chronic conditions. Who have not checked in on me about my condition, I will sometimes check in with them about their condition. Well, my close friends, she has PCOS. And my impression is that for her, it's very mild and inconsequential. So maybe she has a mild form of it. I have another friend who also has PCOS, she has it more serious. Three friends who are women who have PCOS actually now that I think about it.

SAIF:
Yeah. I- yeah- I have some friends who have chronic conditions. But it's not clear to me whether they are experiencing pain and so on from their conditions and simply not telling me or if their experience is rather mild, or they have their conditions of theirs under control.

NUREENA:
Right.

SAIF:
I think for some people also, they don't want to talk about their conditions. So like one of my friends with PCOS: I believe I probed her about this several times. And she has never really given me a meaningful response or she tends to be submissive. Yeah, anyway.

SAIF:
And then your second question. “How has your journey looked around your condition and IDing as disabled?” Oh, I think as a disabled Yes. So I've never, we've talked about this, I've never identified as disabled because I never knew or thought this was a disability. Yeah, I thought disability was someone who sat in a wheelchair or someone who couldn't use a certain limb, or someone who had a learning disability or something like that, it never occurred to me that an autoimmune condition that no one could see was a disability. And it's still not clear to me whether it is or whether I should, whether it is a disability, and therefore I am disabled or independently of whether I should identify as it or call myself disabled, right.

I'm still fairly private about it. So I don't think I'm going to be telling people about it much more than I already am. But when I do tell people about it, should I ID as disabled or should I identify it as a disability? I tend to just refer to it as an autoimmune condition or disease. But I even use the term disease less often, condition is more neutral and less informative. Condition can be anything, alright. Disease is a more narrower term. It’s a pretty vague term, which I prefer, I think.

NUREENA:
And I would say with the word disability, it's a very personal choice, right? Like if you want to use that to ID that way or not? it's very personal, it's very individual too.

SAIF:
Well someone can be…someone can choose to not identify as disabled and still be disabled, right. So it seems to me that people who refer to themselves as disabled, it could be merely- either merely describing the fact that they have a condition or they could be saying also, by the way, I identify, part of my identity is having a disability. Those are different things and if it is the case that Ankylosing Spondylitis is a disability, then yeah, certainly. I'll describe myself as that. But I cannot identify myself as that. And it's not just because I'm private about the condition.

NUREENA:
How has- How has it shown up for you- And thank you for sharing that. How has it shown up for you as far as because- you know, this flare and the pain it's like, very up and down, but then you also have this daily pain and fatigue that you've also described? Are there ways that community spaces and events have felt inaccessible to you acknowledging that we've also, you know, for the past few years have been in a pandemic, but, you know, like physically, like the seating arrangement or like, you know, whether there's a place to rest, things like that, like, Are there places that you've- community spaces that you've walked into and been like, this does not feel like accessible-

SAIF:
Woah-

NUREENA:
Or do feel accessible?

SAIF:
You know, I was gonna say no, but actually, one thing that I have trouble with, especially if I'm not taking like- you know care of my condition with my medication- is standing for a very long time, if I do that, it’s hard for me to do that. . So I remember I was at a literary event, now that I think about it in New York. And I was listening to an author speak about a book. And seating was all taken, all the seats were taken, and there were a bunch of people in the back standing, and I was one of them. And yeah, I do remember having trouble standing. Because I was, you know, the lecture is going on and on for 30 minutes to an hour or whatever, and I'm not having fun. I'm standing- I'm sore, trying to find something to lean on. I'm not feeling good. You know. And other than that, like, it's not usually the case, I have problems.Like in public, I don't feel excluded based on my condition or because of my condition. So I don't need any special accommodations or anything like that.

But yeah, now that I think about it, if I don't have something to sit on for extended periods of time, and yeah, standing for a very long time can be actually rather difficult for me, or at least it has historically. Now that I am more serious about my condition and [incoherent] medication more regularly- I'm actually due for a dose right now. This week. Oh, and the next dose is arriving Tuesday. Yes, the shipment- so I will take it Tuesday.

Yeah, I think I could probably stand for longer now. I don't know. But yeah, now that I think about it, it has been hard for me to stand up. And in places like New York, where there's like no space, and a lot of venues are very small. And it's often the case that you're standing right? New York is a walking city. That's one thing I like about New York because I can just jump on the train, I can go anywhere. I'm walking up and down the street to access a store or food or whatever, the train. Events, friends. So I'm doing a lot of walking and standing in New York. You know, I'm sitting on the train, sitting at my destination if there is seating there, but like, yeah, if there's no seating, then that's a nuisance. But yeah, so I'm, I'm privileged, I don't need special accommodations. You know, if I were to go somewhere, and there’s only- with my mother say- and there’s only two- one seat left not only would I volunteer my seat to my mother because she’s my mother but also like, she's a lot older than me. I think she would need it more than me. And I can stand and she can sit down. Yeah, so. Yep.

NUREENA:
That made me think of- I haven't in a long time, but I used to submit art work to community art shows and stuff. And anytime you got into a show, there'd always be a reception.

SAIF:
Right. Right.

NUREENA:
There's no seating at the reception. And it would be like a three hour thing at a gallery where you're standing.

SAIF:
Oh, yeah, just standing.

NUREENA:
And it was always very hard on me.

SAIF:
Oh my god.

NUREENA:
And I didn't fully realize that at the time. But later on, I'd be like, “Oh, that's why I was so exhausted.”

NUREENA:
I'd have to find spaces to lean against.

SAIF:
Oh my gosh, okay, that's really terrible. How do people do that? Like, don't older people need it? Like people need to sit down and like even if you don't have a disability, if you will get tired, and especially for older people.

SAIF:
And then the next day you'd be exhausted right? Or something like that.

NUREENA:
Yeah. Extremely.

SAIF:
And then would you realize that it was clearly because of the night before you're standing a lot? Or would you be confused as to why you're so tired?

NUREENA:
It took me time to realize, but yeah. And I’d be like, Oh, it's because I'm standing and didn't really have seating. And it's not just standing right. You’re also in a social situation. So you're also having to hold yourself a certain way. And you're having to interact with people and all of that engages your body and uses up energy. So yeah, so I definitely hear you on the standing piece.

Well, my next question- the next part of this, we are going to go into the digital spaces piece that I've talked to you about.

SAIF:
Right.

NUREENA:
And so from what you've shared it, it sounds like for the most part, community spaces and events in person, outside of the standing piece have mostly felt accessible to you.

And for many folks with conditions, we also find solace and connection through digital spaces. So what has your experience been with this? Do these spaces feel fulfilling for you? Do you feel like you can be more vulnerable or talk about your challenges or conditions more. Anything you'd like to share around that?

SAIF:
Right to digital spaces. I mean, I made a mistake earlier. So I’ve divulged personally, to trust the people and loved ones, the fact that I have this condition. But there's also a group of people in New York that I meet up with periodically, and it's called the SAA; Spondyloarthritis Association of America I think it stands for. So people with my condition and similar conditions in the same class. People with Lupus, Ankylosing Spondylitis, which is my disease, there's rheumatoid, rheumatoid arthritis, Crohn's Disease, these are all similar sorts of conditions. And affect the body in similar ways.

There's a group of us in New York as a, I guess, a local chapter of SAA. And when I was in New York- when I was in New York, I would meet up with them. And meetings would be like, once a month, or every other month or whatever.

I wouldn't go to every meeting, I would try to go and that was like the first time I met people who had my condition. Literally, I'd never met anyone else with my condition. It wasn't until, oh, except one of my rheumatologists. My first rheumatologist, himself had my condition, which was very interesting. But otherwise, I'd never met anyone with my condition- it was only only when I went to these groups and was like, Oh my gosh, like all these people now have AS, or a similar condition. And all of them are experiencing the same issues or some of the same issues as me. That was very eye opening. And there was a huge spread also in terms of age, lots- a few young people, but mostly older people. And one thing that was very striking was that I was like one of the few men in the group. Right? I was- I remember- I think one of the only meetings I went to, or one of the first things I went to, I was like the only guy in the room. And then there's like an older man there who was like the father of a girl who had it. And everyone else was a woman, which, you know, that was very striking.

Because again, my understanding is that this is a condition that for the most part affects men, right? It's more common among men. And why that is the case, it's not clear. I saw my current rheumatologist the other week, and actually asked him this question. He told me that it might be because of a difference in flora. We have bacteria in our bodies, the bacteria or the flora in our bodies in men is different than the flora in women. So something something something testosterone, something something something. [Laughs]

So it’s actually [incoherent] why men have it more. But any event, yeah, so I wouldl go to that. And I remember- yeah, I found that being very eye-opening. Cause I saw these people, a lot of them had my condition or had more advanced forms.

A lot of those people exhibited a fusion more, much more serious fusion in their joints and bones and spines than I did. There was one woman there who kind of sounded like me, like, you know, highly educated, very accomplished and ambitious. But she had serious fusion like in her neck, in her spine, and she wasn't much older than me.

There were other people there who unfortunately did not respond well to the medications I was taking. I had been taking. So these biologics- some people don't take them by choice because some people just want to go au natural or whatever. But some people take the medication and they don't work, or they experience severe side effects.

And I don't experience any side effects from these biologics. Like I said, I'm on my second one. And I just take them as long as I can until they stop working. The first one I stopped working when I was in South Africa in large part precisely, probably because I did not take it for like nine months. And that meant my body was able to form antibodies to the medication. So in other words, I became immune. Probably during that time period, because once I returned to the US, I was in intense pain, and I resumed my medication, the one I had been on, I didn't experience any relief, and my rheumatologist concluded that's highly likely I'd become immune to the medication, right. , My body had formed antibodies, which means it didn't affect my immune system anymore, which means it didn't work. So I needed to switch to a new one to achieve the same immunosuppressant effect. So they will just switch to a sister medication, it's very similar. AndI was advised that because it is kind of similar, I should try it because I was- the first medication I was on worked for me well. And thankfully, the second medication did work. And I've been on it since, I'm taking them more regularly. But for a lot of people, they take these biologics and they don't work for whatever reason, right? And there's a number of these biologics on the market now. So you have some choices. Some are a lot older than other or less sophisticated drugs, or more onerous to take, right? One of the drugs, for example. What's it called Remicade? Something like some ‘R’ term. And that involves infusion. So you have to like go to the hospital, like once a month, and you just sit there for a few hours while the medication is infused in you through an IV.

Yeah only so many of those out there. So if a few of the drugs don't work, or you go through them, and you don't take them regularly, and they stop working, because you've formed immunity to them. You know, these drugs have a natural lifespan. The first drug I was on it's called Humera. Very popular drug. In fact, it's the most- the most profitable drug of all time. I'm not sure if you've heard of it. It’s called Humira: H-U-M-I-R-A, I think.

NUREENA:
I’ve heard of it.

SAIF:
Yes. And it's prescribed for a variety of conditions. And because it’s extremely versatile. And because it's very expensive to make. And because one company has asked for the medication- Abbvie-I think it's called it yes, they had a monopoly on this medication. They were making billions of dollars off this medication. And I think recently they lost the patent after somehow being able to renew their patent by slightly modifying the formula or the composition of the drug in order to retain the patent over time. There's something that's done in the pharmaceutical industry. I suppose that at the advice of the lawyers, IP lawyers who work with these manufacturing companies or drug makers. And yes, so that drug I was on initially, I became immune to that now on another drug called Cimzia. C-I-M-Z-I-A. It’s very similar. It’s called a TNF inhibitor: TNF stands for Tumor Necrosis Factor. And it's similar. So that works for me. Yes. So my point is, it works for me. And I don't experience side effects. I'm good. Okay, I'm gucci on these drugs. But I heard from a number of people in the group, when I would go, that they experienced side effects. They don't work- the biologics, blah, blah, blah. And I'm like, Oh, my God, because like if they don't have - if they can't use these medications. It's very difficult to treat the condition like what else can you possibly do? You gotta treat with these medications. For those people? I think those are the people that suffer the most probably from the condition people who don't have access to these medications or do but they don't respond well. Either because of side effects, or they don't respond at all, because it doesn't work. And then those people I think, are the people that suffer the most. Yeah. Because now they're in trouble.

NUREENA:
Are you still in touch with any of these people? Or do they have an online presence?

SAIF:
Yes. Yeah. So even after I left New York temporarily- I was working in New York until [incoherent] and then I moved to London, because I got a new job. And then after I moved to London, I stayed in touch with the group. It was like an email listserv, and so on. And then in the pandemic, it went online, so we started meeting remotely via zoom and since then, we've been meeting remotely and you know, every few months, I'll tune into a call.

And a lot of the people that I knew, or people in the group will still meet up via Zoom. And there's a nice lady who runs the group. She's actually I think, stepping down after six, seven years of running the group herself. Everyone in the group has that condition or similar condition. I think most of us have AS though some people seem to have Crohn's or Rheumatoid Arthritis. I forget. Yeah, I think it's mostly people with AS. And again, it's a variety of people: younger folk, older folk, people my age, and we will meet up online. And that's basically the only source of guidance I have outside of my doc. And not only do we have these monthly meetings now via Zoom, we also have a WhatsApp group, so on WhatsApp with these people, and you know, every other week or so someone will chime in and ask a question, or say, “Hey, I'm experiencing this symptom. Has anyone experienced this? What do I do?”

Sometimes we'll talk about medications or drugs in there. It’s actually a really great resource, because I can just text my rheumatologist whenever I want, you know.

NUREENA:
Right.

SAIF:
And it's one thing to talk to a doctor about a condition. It's another thing to talk to someone who has it, or a group of people have it. To be able to access sort of that collective wisdom. So that's actually very convenient and useful. And I think, yes, we also have a Facebook group and email listserv, it's all basically the same people.

NUREENA:
Yeah.

SAIF:
But besides that, yeah, I don't think I know anybody who has AS, and I don't have any other sort of community. I suppose what I could do is search for more community online. I'm sure there's like a Reddit devoted to the condition and all that. But one thing I'm concerned about is privacy also. So for example, the SAA chapter I'm in, they have a Facebook group that I'm in, but it's a public Facebook group. For some reason, it's not private. So presumably, the fact that I'm in is visible, like someone does some sleuthing. The fact that I'm in there, well, maybe it's not public.

But it's apparent to friends of mine. Right. So people who I'm friends with on Facebook might be able to tell and there’s nothing I can do about that. Right? I'd rather be in the group than not in the group. The Whatsapp group, of course, is private. The SAA monthly meetings are private, right, effectively. So yeah. There’s no like roster of people who have AS with me on it, like on the SAA website. But yeah, so these groups aren't entirely private.

In some cases. But yeah, they are useful, I tend to be most active on the WhatsApp group, because it’s so convenient. And then the monthly meetings, I will go to every now and then. I will typically put like each meeting on my calendar, and I'll just invariably miss it, because I guess I don't prioritize them as much. Or maybe it's because my condition is pretty okay right now. Like maybe it's precisely because my condition is under control for the most part, I don't need to necessarily meet up with folk. But yeah, those are the only digital spaces I really have access to and even physical spaces, because I'm not in New York currently. Maybe there's a local chapter of SAA here, in all likelihood there is. But it's very convenient for me to just like tune into a Zoom call.

NUREENA:
Have you formed friendships with any of those folks in the group?

SAIF:
Not really. There's the woman who heads the group. She's very nice. She recognizes me when I tune into calls, even though I’m no longer in New York. She's- she's nice. This woman who also has this condition here, I guess, in my area. So she's, like, 40 minutes from me. If I wanted- we can meet up and maybe get some coffee and talk about our conditions or whatever. Maybe maybe I'll do that, at some point it hasn't occurred to me to do that. But no, I haven't really formed any friendships.

I don't really have any friends with this condition. I have friends of mine who have chronic conditions that sometimes I will sort of vent to. Who would these people be? One of my friends has recently been experiencing a lot of chronic pain. It's not clear though that she has an autoimmune condition. She hasn’t been diagnosed with anything. I know some people who have autoimmune conditions or chronic conditions, but I'm not very close to them. Yeah, so I actually don't know anyone else personally, very well who has my condition who I can talk to regularly. So I mean everyone in the group chat is nice and local, or the New York chapter of SAA.

NUREENA:
It sounds like a really great resource for you.

SAIF:
Yeah, yeah. But yeah, I'm not friends with any one person, I would say, or close friends. Everyone's very, you know, cordial and nice. But-

NUREENA:
What about digital spaces outside of that? Are there spaces that you participate a lot in? That don't have to revolve around your condition?

SAIF:
Oh, yeah. Right. So I'm on Facebook. I mean, Desi Punksss, right. South Asian Punx. I'm in a number of other Facebook groups. But I've been using Facebook a lot less over the years now. And in the pandemic, I started focusing on Twitter. Twitter I find very useful. I can actually connect with people who do stuff I care about, right? Whereas Facebook, it's more like an accident that I met so and so person, and now I'm connecting with them for personal reasons. But we don't necessarily have anything in common. Right?

NUREENA:
That makes sense. Yeah.

SAIF:
So I'm not having the most sophisticated conversations on Facebook, but I'm having more of a community on Facebook. Because on Twitter, even though I have like now I have more than 10,000 followers. I'm not really talking to any one person. I'm not talking to people on there regularly about issues and don't really have many friends on there.

I just have enemies [laughs] if they haven't blocked me or I haven't blocked them. Yeah, so when it comes to digital spaces on Facebook, I will post on my wall sometimes or comment on my friends posts. And then I have these groups I'm in like Desi Punksss, and South Asian Punx. But Desi Punksss is probably the one I'm the most involved in. I'm in a few others as well- based on subject matter. Some of them are work related or law related.

Some of them are related to philosophy because I have an academic background. And then some of them are just like random fan groups ,books, movies, shows. There’s Reddit- I'm on Reddit, I tend to read I tend not to post. Twitter, I'm active on. Instagram. I have an Instagram but I haven't posted any photos in years. The last photos I posted were when I was in London. That's 2019. I'm rarely on Instagram. I love Tik Tok. I fucking love Tik Tok. Okay, I'm addicted to Tik Tok. But if I have deleted Tik Tok- most of the time Tik Tok is not on my phone because I can't have it on my phone. Otherwise, I spent too much time on there.

NUREENA:
I’m the same way. [ laughs]

NUREENA:
Do you have a preference between engaging in these? You know, you've mentioned many different digital spaces versus in person right now like, does one feel more accessible than the other? Or does it just kind of vary on where you're located at the time? Or your mood?

SAIF:
Well, I mean, digital spaces are immediately accessible via my phone. So I'm constantly on my phone, I'm addicted to my phone, unfortunately. So it's very easy for me to participate in conversations like on Facebook, or Twitter or whatever, via my phone.

I prefer to be on my laptop because I can type faster. And I can convey and share links and things like that more easily. When it comes to in person conversations and so on I'm pretty isolated. And I don't have much of a community. And it really stinks. And it's really only Facebook and Twitter and so on. And other digital means of community that I even have one or two, you know, online. Yep.

NUREENA:
Well, we're getting to my final question.

SAIF:
All right.

NUREENA:
Which is, when have you felt a sense of belonging and you can- That could be like a particular-it doesn't have to be like a broader community space, it can be like a particular event that you went to, whether it was digital, or in person. Are there any moments that come to mind where you felt a sense of belonging?

SAIF:
Oh, well, that's easy for me to answer because I tend to feel most at home when I'm in these sort of like South Asian diaspora, you know, youth spaces. Young people who are progressive and leftist that's where I tend to feel the most at home.

It’s actually very striking because like, you know I come from a Muslim background, But I don’t tend to feel at home in Muslim spaces. I love being in these spaces where it's like folk like us who are our age or like younger diasporic immigrant kids, right. Grew up here, right, but were raised by immigrant parents and have gone through a lot of same issues and I love actually being around those groups, right? Cuz I feel so like, understood in- at home in those spaces. It's really remarkable. And I really value and cherish those spaces, but they're not a lot of those. And yeah, that's where I find like, I have the most in common with people. I don't really have to explain myself and it’s sort of just understood. You know, what I've been through, what my life is like or what issues I face.. And yeah, I love that. I love that for us.

NUREENA:
Yeah, I love spaces like that, too.

SAIF:
Those are the ones I feel the most at home. And yeah, I really do feel like a sense of belonging in those spaces. I always feel like energized.

NUREENA:
Yeah.

SAIF:
Especially when I'm in those cases in person. Yeah, that's infrequent. Maybe that's not very infrequent. when i'm in New York, because there’s a lot of spaces like that in New York. In New York, there's an open mic, I go to called. It’s called Subcontinental Drift that's held every month by a few friends of mine. And it's like an open mic. There’s also Asian American Writers Workshop, which I've been going to for many years since grad school, they have talks and lectures there. Previously, there was a group of South Asian activists called South Asians for Justice: SAJ. That was active. And I think it's been defunct for many years. Unfortunately, that was one I was involved with and then there was also the IC JB international campaign for Justice in Bhopal, which does grassroots organizing and activism and political advocacy for victims and survivors of the 1984 Bhopal Gas disaster, which I think I've shared with you, my mother's a survivor.

Those people in the ICG, they’re not all South Asian. But I like to be in those spaces. Even though I don't, I'm not like super buddy buddy with my friends or colleagues in that space. But you know, I feel like we're all on the same page. And that's refreshing as well. Besides that, yeah, I tend to feel like most at home in like spaces of color-communities of color, or my age or so yeah.

NUREENA:
Do you ever wish for there to be room to also share about chronic conditions in these spaces? Or does it feel fulfilling enough to be in these spaces and keeping some of these other groups you've mentioned separate?

SAIF:
Um, yes, I'm very private about my condition, health in general.

I'm not likely to open up about them in these more generic spaces. Like if I'm in my SAA group, that local chapter- the New York chapter and I'm opening up about my condition. My AS, my Ankylosing Spondylitis, I'm more comfortable doing that, like I'm fine with opening up about my condition there. Because other people have it, like we all understand we have it -the condition or similar condition. Ordinarily though, I'm not talking about my condition with like, random people.

I'm only like talking about it with trusted- people I trust. And even then that's [incoherent] a small group of people and then even then I'm not really talking to them on a regular basis about the condition. So I- no- I don't think I've experienced the need to be able to talk about my condition in particular, in these spaces, I do value being able to talk about health issues, generally speaking, right? And you know places like Desi Punkss or whatever. People will open up about, you know, physical issues they’re having, mental health issues, health issues, generally speaking, their own health issues,the issues that their family members or loved ones are having also. Yeah, and I do value being able to do that. Yeah, where else are a lot of these people are going to talk about these issues, especially because a lot of these issues aren't simply biological, right? They're also social in nature. Not just our physical health- promises or attitudes or practices around those health problems or beliefs and so on. We talked about how health issues of any kind tend to be stigmatized right, in South Asian circles so like where else are people our age- or from our background gonna be able to talk. Or going to talk about these conditions and issues except or other than with ourselves or with each other?

NUREENA:
Yeah, I agree with you there. Well, thank you so much for your time and your labor and your energy and, you know, sharing about this part of your life that you don't normally share about. I feel very honored to receive the story and really value everything you shared today. So thank you.

SAIF:
Thank you for arranging this.