I Talked with Zach, the Try Guy with Ankylosing Spondylitis (Part II)

Since Zach’s vlog announcement of his Ankylosing Spondylitis (AS) diagnosis in September 2018, the video has been viewed over 4.9 million times (as of time of this publication).

In part one of this series I talked about Zach’s story’s impact, the validation that came with his diagnosis, and lessons learned living with a disease that is always beneath the surface.

In part two I dive deeper into Zach’s decision to announce his diagnosis on YouTube, his approach to coping with AS, and whether he calls himself an advocate. Finally, I’ll share his exclusive message to the AS community.

Before I continue, I want to clarify that I am neither doctor nor medical professional. None of the following should be taken as diagnostic, medical or treatment advice. Please consult with your physician before starting, stopping, or changing treatment.

Let’s get started.

Why the video?

When I asked Zach about his decision to vlog about his diagnosis it was quickly obvious I was asking a ‘duh’ question: videos are Zach’s life. And his answer below reminded me of my own decision to talk about Ankylosing Spondylitis when I was diagnosed; our decisions to go public about our personal lives were default responses – why wouldn’t we talk about it?

Here’s Zach’s version:

“[Doing the video] wasn’t even really a decision. So much of my life is public. And I think anyone in the spotlight has a tremendous opportunity to make people feel less alone. I dealt with depression when I was a kid at a very young age, so when I was like between 10 and 13 I got obsessed with this idea of having purpose. And I sucked at all the things that kids are good at – [there are] a lot of the social hierarchies based around sports and I’m terrible at all of them so I would cry myself to sleep. So, I dealt with depression, I dealt with OCD; and I remember being in either middle school or high school and I saw a list of famous people who had OCD, just as simple as that. It was just a list and their names were printed, and like, Stanley Kubrick was on the list! And I was like, ‘Wow, these are the people I idolize and they’re fucked up just like me! That’s amazing!’ And I went one step further to, ‘Oh, not only do they have OCD and they’re ok, like, they have OCD and that’s why they’re amazing and maybe, like, you have to be fucked up in some way to be great at something, so the fact that I am the way I am is just because I’m great! That’s what it means, it means that I’m gonna be more creative because my brain’s different and that’s what’s gonna set me apart.’ …I never heard anyone talk about it; I never saw a video where someone I idolized talked about their struggle. It was just that sheet of paper and seeing those names that made me feel like I wasn’t alone; it made me feel like I was gonna be ok down the line. I really took that to heart and I’ve tried whenever I can in my life to be that person for other people.”

He also shared, “I felt like I had a responsibility to do [the video]. I also think it was partially selfish, um, I think it was really helpful for me to talk about and to get it out there and let people know because I didn’t want to keep it in.”

On behalf of all the people who have been diagnosed or now know about AS because of your video, Zach, thank you for being selfish!

Coping with the disease

Ankylosing Spondylitis is not a disease people can see unless it has malformed the spine or caused someone to begin using braces or canes or wheelchairs.

And a common topic in many chronic disease communities is the difficulty of living with an invisible disease that even those of us who live with it can’t see. And it’s nearly impossible to put into words what we’re physically feeling for our doctors, our family and friends, and our colleagues to understand. Zach may have a diagnosis – a name for what his body is feeling and doing – but he’s still finding words to put to the symptoms he’s had before middle school and the treatments he’s still getting used to relying on.

Zach Kornfeld quote

Zach shares: “On top of it being a disease that’s so common, but that people don’t know about, one of the hardest things for me is just the idea that it’s an invisible illness. You don’t see it. So other people don’t know that you’re sick – that’s really challenging, right? The part that’s been harder for me is that I can’t see it. So it’s like, ‘I think I’m getting better,’ but I can’t see it, it’s not like a rash that I can see, like, ‘Oh, it’s bigger today! …Oh, now it’s like 2 cm smaller.’ No, [AS is] somewhere inside and even when they went to measure it with their very advanced machines, they’re like, ‘Well, it seems to be the same,’ and I’m like, ‘No, it’s not though.’”

Zach mixes the reality of the pain of the disease with some realistic positivity: “I always try to look at silver linings and focus on happiness, the positives as opposed to the negatives. So, the positive for me is that it has made me way more aware of my body; it has made me hold myself accountable to myself, right? And [to] just understand how different foods make me feel and how different activities make me feel, and like try to measure myself more actively.”

And then, of course, Zach being Zach, there’s the need for laughter. But there can be a deeper meaning to humor with his profound coping tool of mixing realistic humor with self-healing:

“[Humor is] an escape and it’s a way to help you verbalize and cope with the thing that you’re going through. I’ve always believed in humor as one of the best medicines, not in the sense that laughing makes you feel better, but, you need to be able to tell your own story and you can re-externalize that through humor. If you can get some kind of distance from it and laugh about it [and] not take yourself so seriously, it’s really helpful in not letting your own experience be so crushing. Like, if you can take it out of you and turn it into a story and now it’s over there, you can look at it and you can figure out where the punch lines are. A little emotional distance is helpful and then from there you can heal yourself.”

At the same time, Zach is still learning how to balance AS and his work. The rest of the Try Guys, Eugene, Ned, and Keith, have “been great and understanding to an extent but obviously they don’t know what it is; they’re good at keeping it light and we joke with each other.” But sometimes at the end of a long day of work, Zach admits that it becomes difficult to ignore the flare in symptoms from pushing all day. He says, “I feel like shit. Like my body [is] just screaming at me.”

He’s still trying to figure out how to respond in these moments and even after he gets home. He shares, “[I’m] like, ‘Just leave the dishes, I’ll do it all tomorrow. I just can’t move right now, I just need to be here.’ I think I’m still figuring out ways to really verbalize what I’m going through and let people know, like, ‘Hey I’m going through one of my things and I just need you to be understanding,’ and also I need to be better at standing up for myself in that sense, of allowing myself to have those moments and let it be valid. So, this is all super new for me, um, and again, for a lot of it I try my best to ignore it, even post-diagnosis.”

Zach’s experience mirrors the all-too-common desire in the AS community to live, not just survive. Many of us understand the need to stifle the physical pain when we want to be in control of our day, all while knowing our body will make us pay for it later.

Treatment

Zach sees a rheumatologist and is on a biologic drug, which he talks about in his video (around minute 7:31 in his vlog announcement). Biologics are the first recommended course of treatment for AS if non-steroidal anti-inflammatory drugs (NSAIDs), like ibuprofen or naproxen, don’t work and they are intended to be used long-term. He told me about the moment he realized the biologic was helping (pro tip: it may take several tries to find the best treatment for each patient; the first one you try may not be the one for you):

In the beginning it was miraculous. Like, the heavens opened up. I remember waking up. I had this moment where my eyes slowly blinked and I saw the ceiling above me and I was like, ‘The sun’s out and I didn’t wake up once!’ And it was like this beautiful, like, my bed had never been more comfortable. I was elated.”

Zach Kornfeld quote

He continued:

“All this time I had been doing yoga; I tried to do it twice a week. You know, I started getting more active. I’d say the good thing is that it made me become more aware of, you know, my physical lifestyle. I always joke that I don’t want to be in shape, I just don’t want to hurt. Like, I could care less if I weighed whatever and if I didn’t look good; I just don’t want to hurt. That’s my only reason to ever exercise.”

(pro-tip: AS treatment guidelines encourage exercise, which will look different for everyone with the disease. Remember to consult with your specialist before beginning any type of exercise.)

Zach admits he began slacking when the medicine began to work and slowly the disease began doing that frog in a pot of boiling water thing again. So he went back to the doctor and they added a different medication in addition to the biologic to manage the pain that was returning. The additional drug is helping, but Zach now recognizes that AS is always just beneath the surface. He shared:

“It’s the end of the day right now; I haven’t been the most active [and] I’m aware of it. …So it’s a weird thing to just like constantly be aware of and have to ignore a baseline of pain. ‘Cause it’s like, it gets back to the, ‘Well, ok it’s not pain? It’s more like it’s just really a minor inconvenience. I’m fine, I don’t feel anything.’ But it’s there. I feel it right now as I’m sitting here. I’m always aware of it.”

What else does Zach do? A little stretching during the day, some physical therapy, and he pays attention to what foods make him feel worse. Oh, and then there’s his dog, who makes him get up and take walks twice a day.

Advocate-in-Training:

Zach Kornfeld
Screengrab of Zach during Skype chat with Charis, April 2018

Zach’s vlog announcement automatically made him an Ankylosing Spondylitis advocate to the rest of the world by virtue of his decision to share it on such a large, public platform. I wanted to see if he considered himself an advocate.

“Yeah, I certainly don’t think of myself as that day-to-day. Um, I’m trying – it’s something I’d like to be better at and continue doing. So um, I’m an advocate in training, I guess.”

He continued:

“Your email was well-timed, it came at a time where I wasn’t acknowledging my pain yet, but I knew I had to. So honestly your email helped. I realized I can’t make another video about this if I’m not going to, you know, practice what I preach. And what I really preached in that video was this idea that you have to advocate for yourself because no one else is going to. You can’t doubt your own reality because it’s the only one you know. And just, you gotta take care of yourself and I wasn’t doing those things.”

Speaking of advocacy, I made sure Zach was aware of just a few opportunities to raise awareness, including World AS Day on the first Saturday of May each year, Spondylitis Awareness Month every April, and Cookie’s Faces of Ankylosing Spondylitis.

Words of wisdom for others with AS?

Zach Kornfeld Quote

The thing is, Zach’s willingness to talk about AS with me is a message in itself that awareness is important. But he had two specific messages for the whole AS community:

Here’s the first one:

“I guess if I had a word or two it would be that we’re in this together and I’m going through the exact same things [as you]. This is still such a new thing for me. So, for me, I’m trying to not let it define me. I’m trying to define my relationship to it. I’m not letting it hold me back from things that I wanna do. I’ve done some crazy shit in the last couple years, and I did it with this disease, and I am way less cool and way less fit than the people I have met that have this disease. Which means that if I can do it – I generally believe that if I can do it, anyone can do it, right? So, it’s really up to you to decide who you wanna be, um, and if you want to be the person with AS who risks a week of flare ups so you can try out roller derby, fuck it, do it! Also, falling’s not that scary. It seems like it’s gonna be really scary, but it’s pretty fun. It hurts though….a lot of things that I’ve done the last two years or three years – I had AS, I just didn’t know it yet, and I still did it. And also, like, it could get worse and I’m aware of that. And it could prevent me from doing things moving forward; I hope it doesn’t. So, I guess the more universal one is that I’m here going through the same things and, um, I’m looking inward to the community to inspire me.”

Here’s the second one:

“I’m still figuring this out. I imagine a lot of people feel that way, um, and I can’t imagine that goes away, but I think that’s ok. You know, life is just one big process of figuring it out and I don’t think anyone ever really does, so keep trying. I’ve always really believed in relishing in the absurdity of life. You know, a lot of my life has been marked by sadness. I nearly died in a car accident when I was in fourth grade, I had depression in middle school – I had depression in elementary school! I had OCD in high school. I had bad surgeries and uh, I have an *autoimmune disease now. Some bad shit has happened. But I think it’s more important to focus on the things that make you smile, the things that make you laugh, the things that make you happy. And that’s how I’ve chosen to live my life up into this point and it’s how I’m gonna try and continue to live it going forward. When I was in that car accident I was in fourth grade. I could’ve and should’ve died, and I was out of school for a few months, and there was a moment where I was like, ‘Wow, life is really fuckin’ precious,’ right? You only get one of ‘em, and it can’t get away from me like that. So, every day when you wake up and you do something that makes you smile, even if most of life doesn’t make you smile, find the things that fill you with joy and do it as much as possible. Because we’re only here a short time and who knows what’s next if anything at all. So just go have a good time.”

*Ankylosing Spondylitis is technically classified as an immune-mediated inflammatory disease. Truth is, researchers can’t prove it’s autoimmune. We need more research to find out.

And I have nothing better to follow Zach’s words, so…

Finale

What’s one question you would ask Zach? Put it in the comments below.

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“Outtakes” & Resources!

Everyone’s story/disease experience is different

Ankylosing Spondylitis is a complex disease with a wide range of severity with symptoms and progression. AS affects every single person differently, so what one person experiences will not be everyone’s experience. Additionally, everyone responds differently to treatments, so what works for one person will not work for everyone.

Between Zach and me, our stories are almost at opposite ends of the spectrum as far as how we grew up. For one thing, Zach often alluded to his lack of athleticism with statements like, “I’ve been to the gym less than 100 times in my life,” whereas I was the most active child ever and eventually played college soccer. And yet Ankylosing Spondylitis happened to us both.

Now what?

Overall, Zach doesn’t see himself changing how he approaches the videos he produces, but he did express a desire to create more videos directly about AS. He said, “I think that I’m going to continue mention it in videos when it’s appropriate, but also I think that it doesn’t always have to be mentioned and I think that’s ok. Like, if we were making the ballet video today, maybe I would add a line about how it is physically impossible for me because my body can’t do that thing, but I think a lot of the videos I make are vehicles toward someone else’s passion, someone else’s identity; it’s not always about me.”

Resources

For more info on all things Ankylosing Spondylitis, visit the Spondylitis Association of America website HERE.


 

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