Reframing Lupus: My Brother's Story

It was such a treat for me to interview my incredible brother. He's a genius (literally), hilarious and incredibly talented. We're only 15 months apart in age, so we grew up very close. We looked so much alike, people always thought we were twins. Judging from the photo of us as kids below, do you agree? Bonus points if you can guess who's older 😉

I'm sure you can imagine how difficult it was to watch my brother suffer in the hospital while they tried to diagnose his symptoms. He is the strongest person I know. Through the whole painful endeavor he always kept his composure and never broke down. Even when he received his diagnosis his immediate reaction was one of implementation rather than self-pity. 

Although his diagnosis changed his life forever, he still remains optimistic and continues to thrive despite the challenges it could pose. His attitude is an inspiration. Here's his story told in his own words:

Describe yourself- hobbies, work, etc.

I live in Long Beach with my wife and our two yappy dogs. I'm a comedian. I have a day a job, but it's really just to keep the lights on while I pursue my passions. I do stand up, sketch, improv, act, and make music. I tend to have pretentious taste when it comes to all things music, literature, film, and even coffee. But I try not take myself too seriously.

Did you always know that comedy was what you wanted to do?

I stopped doing comedy for a while just because I wasn't really ready for the challenges that it threw my way. But now that I'm back, I'm attacking it tenaciously. I know I'm looking at a long road if I want to succeed, but I'm excited for it.  A lot of people think that comedy is just about being funny and standing on stage and talking. But the people who look so natural are just people that have put in the practice.  

It sounds like you have a really rich life.  Do you even have a life threatening disorder?

I am diagnosed with Systemic Lupus Erythematosus, which is considered an invisible disorder. For example, if you see someone with a missing arm you can't argue with them, but a lot of time you can't see the pain that someone who has Lupus experiences. 

So if Lupus is hard to recognize how were you diagnosed?

Honestly, I don't really understand fully how they diagnose it, because doctors even have trouble identifying it. They basically have to eliminate every other possible illness you could have until Lupus is the only one left.  But the reason I ended up at the doctor for a diagnosis was that I had what's called a "flare up." In April of 2012, I was experiencing wandering joint inflammation and pain from time to time, but not consistently and not predictably.  So if that pain was a 1, the flare up symptoms felt like a 10. And when you're in a flare up, the pain and inflammation just keep intensifying.  Basically my hand looked like a blown up latex glove.  

How did you feel when you found out your diagnosis?

I honestly felt more relieved than anything. Auto-immune diseases are deceptive. Not many people can see your joint pain, so there can be a bit of feeling like no one is listening to you.  A lot of people made me feel like I was making it up or being a crybaby. You can even start to wonder, "Am I just a wuss?" So, having something nameable that I could treat was a huge relief -- it meant I wasn't insane, at the very least. Having a diagnosis meant that I could move forward with treatment and start getting on with my life.

How did you get Lupus?

No one knows what causes Lupus. It seems to be hereditary, and it seems to affect more women and people of color. So, I guess I'm special :).

Is it contagious?

Absolutely not.  The symptoms begin developing all on their own and again no one really knows what causes their onset.

Are there any known cures for Lupus?

There are treatments, but no cure. I'm pretty much on life-long meds, barring any major medical breakthroughs. I also have to watch out for things that can cause another flare up, which is pretty much just sunlight and stress. That's why I live in a cave and only listen to Jimmy Buffett.

Do people treat you any differently if they find out you have an illness?

If someone finds out about the diagnosis before they get to know me, then I hear the pity in their voice. Frankly, it's dehumanizing. People hear a medical term that they might not understand and they picture me as someone who is hooked up to a big medical device all day or something.  But, for the most part, I'm fine. I just want people to get to know me before they start formulating opinions or inferring limitations that they think I might have.  Another major annoyance is when people start giving me unsolicited medical advice about "alternative therapies."  One guy told me my Lupus would go away if I stopped eating cheese.  Someone else told me to juice.  I would just look at them and say "How strange, my doctor wrote me a prescription for steroids, but he must have meant kale."  

Does Lupus affect your ability to do any of the things you love to do?

Honestly, no. But every case of Lupus is different.  I'm very fortunate in that my illness has been very easy to treat and very mild so far -- knock on wood.  I have the occasional joint soreness, but I rarely let it escalate to something that I'd consider debilitating. I'm also lucky in that most of my hobbies don't necessitate constant sun exposure. Hanging out in a bar for an open mic or playing guitar in my studio -- those are excellent hobbies for someone with my disorder and for vampires. Even performances of those things would take place inside and usually at night. If I'd been a surfer, on the other hand, it might be a completely different story.

Do you ever mention Lupus in your comedy?

I think there's more than enough other things about myself to make fun of, and there's not a lot of comedy gold to be mined from rheumatological disorders.  But I think that one of the things that comedy is best at is taking the darkest aspects of our life and allowing us to transform them into joy. So, maybe I'll work it into my routine at some point.

What does the future look like for you?

Honestly, great. Getting back into comedy has been incredibly rewarding for me, and I've found the community that I think I was seeking.  I feel more seen and embraced and effectual than ever before.

How are you doing now?

Great. I'm working very hard to make my dreams come true and trying to get as much sleep as possible while sharing a bed with two dogs and one human.

If people are interested in your comedy where can they follow you?

I'm on Instagram @zaxxsnaxx where I post flyers for my upcoming shows.  You can also see my sketch comedy on my YouTube channel Sundae Knights: https://www.youtube.com/channel/UC8t7x-4iq2wPqzSfLjoacMQ.  

Anything else you'd like to mention?

Yeah, thanks for letting me share my experience. I don't know if it's the typical story you hear about somebody's illness, but we're all different.

What an incredible guy! I'm lucky to call him my brother. Can you see why his story is a major inspiration for the creation of my business? My line of Lupus Research pieces, donates 10% to Lupus Research Alliance to help raise awareness and funds for research. If you're interested in supporting Zack and others living with Lupus, click here to shop.