This AS Life Live! is the first interactive online talk show for people with ankylosing spondylitis (AS) by people with AS.
The program is a collaboration between the Spondylitis Association of America, Novartis Pharmaceuticals Corporation, and Dan Reynolds.
The goal of the series, hosted by Dan Reynolds, AS patient and lead singer of the Grammy award-winning rock band Imagine Dragons, is to inspire and encourage people to live their best lives with AS and to raise awareness of AS. Imagine Dragons has a large USA and international fan base with extensive tours, TV appearances, awards and hits including Radioactive, Demons, Believer and Thunder.
With just the first 3 video interviews released in 2017, This AS Life Live! has reached over 500 million people on social media, and through print, broadcast, and online news coverage.
"Each person's story is unique. As we release more and more of these interviews, I hope that everyone living with AS will find something they can relate to and find value in watching and sharing. Dan has truly been wonderful throughout the series. He is friendly, thoughtful, empathetic, candid, lighthearted, just real." Rich Howard
SAA receives no government funding and relies on the
generous donations from individuals to create and maintain the programs and
services aimed at improving the futures of the 2.7 million Americans affected
By Richard Howard
Thursday, April 6, 2017
Richard talks with Imagine Dragons lead singer Dan Reynolds for This AS Life Live!, a series that brings together people with ankylosing spondylitis (AS) to share stories, help inspire each other, and live their best lives.
Dan Reynolds: Welcome to This AS Life Live. I'm Dan Reynolds. And this is a series for people who have AS, like myself, a place where they can share their stories, to inspire us, to inspire everyone who has AS.
I'm really excited. Today, we're going over to meet Richard Howard who was diagnosed with ankylosing spondylitis over 20 years ago. He is also the Associate Executive Director for the Spondylitis Association of America. So it's very cool to be able to meet him. Let's go meet him now.
Richard is a certified yoga instructor. He actually got certified after his diagnosis, which is really rad. So I asked him if we could meet up here at a yoga studio. I also have spent a bit of my time doing yoga. I'm no pro like Richard, but I'm really excited for him to show me some new moves.
Richard, what's up, man? Good to meet you.
Richard Howard: Hi, come on inside.
When did you start doing yoga? How long has it been for you?
RH: I started doing yoga 23 years ago.
DR: But you actually got certified after you were diagnosed.
RH: Right, right, right, so I practiced yoga—
DR: Which is incredible.
RH: I went in kicking and screaming. I did not want to do yoga. So my wife had practiced yoga and she said, "You're coming to yoga class with me."
And I hated every minute of it because—
DR: It was very similar for me. My wife convinced me to come to yoga. I went kicking and screaming, I was... I felt--I really felt humiliated the first class. I remember just feeling like I couldn't touch my toes. I definitely couldn't get past my shins, and I was angry, I think, to begin with, at the disease, and feeling like it had taken away all my mobility, but I walked out feeling less pain.
RH: So then do you have some favorite poses or things that you...?
DR: Yeah, you know I do, it's just, I'm very novice. I have a ton to learn, but it's typically Vinyasa flow, and so a lot of just kind of the sun-salutation and just—
RH: Those are great 'cause they're general. They work every part.
DR: How did you first -- and at what age -- did you first experience the symptoms of AS? Whether you knew it was AS or not, how old were you, and what was it?
RH: The first symptom I had, I was about 11 or 12.
RH: Yeah, and I would lay down on the floor of my room, literally, like this, on the floor in my room and I was grabbing -- I would have my hands were here because I was just grabbing my legs like this, and I was just in pain. I was like...
DR: In your hips?
RH: Yeah, mostly my hips and I'd moan, I said, "Mom what's going on here?"
RH: And she said, "The doctor said it was growing pains."
So literally I thought, I don't know how many years, I learned, I just assumed everyone's tall, so I thought...
DR: "I'm gonna be huge!"
RH: But I thought everybody did that and I was the one complaining about it.
RH: So, I just thought everyone had the same type of pains I had.
RH: But I learned later – recently -- that, no, not everyone lays on their floor in their bedroom.
DR: I feel like that's why it's such a hidden disease, because -- My brother was diagnosed before I was, for years, and I always just kind of in my head, secretly, was like, ah, he just a complainer, he's complaining about the aches and pains that all of us, you know, have, but he couldn't walk, and he couldn't get out of bed, and I just thought, you know, "Oh, he's just gotta be lazy."
And it's typical things, typical things that a rude younger brother thinks, you know? Until I started to feel the symptoms, and then I thought, I felt like someone was drilling in my hips.
RH: So common, I hear that.
DR: The pain was so intense.
If you had to sum up your ankylosing spondylitis with one word, what would that word be?
RH: Well, the word that comes to mind is "vessel" and because it reminds me of a story. There's a story about a person who has to carry a really heavy vessel, a really large vessel to get water from the water source, a lake, and it's got cracks all through it, so it's leaking water, and that's my AS.
And when someone asks a person, "Why are you carrying such a heavy--Wouldn't it be better if you had something smaller and easier?"
And the answer is yes. I don't really want AS, but do I -- There's still gratitude because when you look back on the path, you see things growing, you see flowers growing, you see plants growing, and those are the things that AS has brought me.
Those are the gifts, that's yoga, and the deep relationship with my family and friends.
DR: That's incredible. That's a great way to look at it.
If AS had a face and you were sitting next to it, what would you say to AS?
RH: Go in peace.
DR: "Go in peace," quite the yoga thing to say. That's awesome.
So one more question I have is, what does living an AS-adjusted life mean to you, specifically?
RH: I would say that it's balance, a matter of balance, like we balance on the mat, there's balance off the mat, as well, with life. And so the things I learned to balance is balancing stress, and so stress could mean dedication, commitment, but too much could be inflammatory for me.
I balance rest, not too much, not too little, activity, not too much activity, giving myself time for rest, but definitely activity, I find it very helpful.
So let's take an inhale sweep up. We should end where we started, exhale hands to heart center.
DR: Thank you so much.
DR: Really, thank you, Richard.
RH: Alright, welcome, anytime.
DH: Alright, take care.
It was really wonderful to hang out today with Richard, to hear his story, to do a little bit of yoga.
I feel very zenned out right now. I'm about to head out, meet another AS patient. In the meantime, you can go to ThisASLife.com to find out more information. And Namaste.
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