I’m going to start this in the worst possible way. I’m going to apologize. When I interviewed Dan Reynolds recently, I did so via Skype. I had planned to record the interview and provided you with some humorous video clips. But the interview didn’t record. User error; it’s on me. Please forgive me.
Dan Reynolds is mostly known for being the front man of the Grammy® award-winning band Imagine Dragons. But at the age of 20, he was diagnosed with Ankylosing Spondylitis (AS). He has recently partnered with Novartis and the Spondylitis Association of America to produce a new interactive talk show “This AS Life Live!”.
I spoke with Dan recently to discuss the first episode of “This AS Life Live”, living with AS, and his ambitions for the future of AS care.
What was apparent throughout my discussion with Dan was that, despite his success, he is still humbled and grounded. This was the first time I have had the pleasure to meet Dan, and it was just that, a pleasure. It was also apparent that Dan is now extremely committed to raising awareness for AS. He mentioned on more than one occasion that his hope is that one day we find a cure for AS, and reduce the symptom-to-diagnosis time (currently in the US it takes 7 -10 years on average to get a diagnosed with AS).
As a member of the online AS community, I saw first-hand the response to the first episode of “This AS Life Live”, so I asked Dan if it met his expectations. “Yeah, absolutely”, he joked that he was expecting it to just be “him with a camera”, and while that still would have been great viewing, I got the impression he was relieved that the final production was of such high quality.
And as a side note: We both concurred that Helgi Olafson (the first guest on the show) is a legend. Aside from myself, I couldn’t think of anyone better to start off the series with. 😉
While doing my homework on Dan and his background, I realized that we had a few things in common. So I dared to share those with him.
We both have AS. We both are “incredibly handsome”, he laughed. Hopefully it was an agreeable laugh. We also both come from large families with a history of autoimmune disease. I am the eldest of 8 children. Dan is the 7th of 9 children.
Dan also has two brothers who have AS, too. I talked to him how that affected his own diagnosis, and how that impacts on his relationship with his brothers. He was just 16 when his brother was first diagnosed with AS. He told me how he “didn’t get it” back then, and he himself saw it as “invisible illness” and thought his brother was just trying to get out of helping his grandmother “move furniture”. He told me how his brother would be laying down on the sofa and he’d tease him. But “karma caught up with me”, he told me, and he got diagnosed, too. He now of course understands now what his brother went though, as he’s been through the same. He now has a sense of empathy with his brother, and I heard that in his voice when he spoke of his brother. Family is an important part of Dan’s life. A theme that was echoed throughout the interview. I got a real sense of warmth from him whenever he spoke of any member of his family.
His brother which he always used to tease, is now the manager of Imagine Dragons. “So now you have to be nice to him”, I joked. Dan sees this as a blessing. It means Dan’s schedule is managed with his condition in mind, as his brother knows as well as anyone else what Dan can do in a day, and what would be too much for him.
As a stay-at-home dad, I am always curious how AS affects other fathers in their role as a parent. Dan was diagnosed just before his first child was born. He told me he was in a “dark place” at that time, because his pain was so bad and he was struggling to cope with his new diagnosis. He even struggled to pick her up in the beginning. His biggest concern, though, was not getting enough sleep. He finds when his sleep is compromised, it makes him prone to going into flare. As does stress. So having a newborn in the house certainly didn’t help with either of those. Although Dan never directly spoke of it, I got the impression that sleep is something he still struggles with. This is hardly surprising.
I delved a little deeper into how Dan manages his flares, especially given unusual job. Like most (if not all) people with AS, Dan struggles the most when sitting for prolonged periods of time. And if there is one place you are going to be guaranteed to be sitting for long periods of time, then it’s when touring the country gig-to-gig. “I just have to get up and touch my toes, and stretch”, he told me. Air travel is difficult, even for a seasoned traveler, when you have AS. Dan certainly could attest to that. When I asked if he had any tips, Dan just said “stretch”. Whenever he travels, as soon as he can after the plane lands, he goes to a Yoga studio. “They’re everywhere”, he exclaimed. “So there’s no excuse”, for him at least.
It’d been mentioned in prep that Dan attributed his current wellness to his Yoga practices. As I’m a martial artist, I know just how much exercise and regular stretching can significantly effect your AS. When you imagine someone doing Yoga you don’t necessarily have the image of a lead singer of a rock band. So I dug into how he came to find Yoga. Before a word left his mouth, he laughed. “My wife did a lot of yoga and suggested I try it”. He told me how he dismissed it at first, and laughed about how he couldn’t imagine himself “meditating and namaste, and all that”. But one day he was in a lot of pain, so he went along to a class with his wife. Afterwards “I felt a lot better”. So now he goes to a Yoga class three times a week.
I was interested to hear from Dan how his AS affected his songwriting. I know from personal experience that pain levels and mindset can greatly affect the creative process. I know I’m not alone in this, either. I asked Dan if any of his songs had been influenced by his AS. “Absolutely”, “art comes from emotion”, he said. Although there are no specific songs ‘about’ his AS, he confirmed that the darker songs were “definitely” affected by how he felt, “whether the pain is physical or mental”.
In the first episode of “This AS Life Live”, Dan asked Helgi the question: “If AS had a face, and was sitting across the table from you, what would you say to it?”
I’m not sure Dan was shocked by Helgi’s response, but his reaction didn’t seem as magnanimous as Helgi’s. So I turned the tables on Dan, and asked him the same question.
Dan came across as a polite, thoughtful, and well-spoken man. But when I asked him that question, I could see him wrestling with his response. He didn’t appear to want to be either of these things in his response. There was a considerable pause before he answered. His answer was simply, “Go away”.
I was mindful not to interrupt at this point, and hoped that he filled the semi-awkward silence with some clarification. My gamble paid off. Dan went on to explain that even though he knows his AS has made him “stronger”, and he can understand and empathize with others more, he would still rather have never been cursed with the condition. “I wouldn’t even wish it on my worst enemy”, he professed.
I will admit that leading up to this interview I didn’t know much about Dan. I still don’t. But what I have learned has helped me understand his journey a little more. I am glad that Dan has chosen to use his position in popular culture to help raise awareness of AS. I was impressed with his honesty throughout the interview. He certainly didn’t shy away from discussion, even if he found it difficult. If he is to be an ambassador for the AS community, those are the qualities I’m glad he has. If we are going to help the general populace understand AS better, we need to make sure they are not just learning about the mechanics of the disease, but the effect it has on our relationships, work, and well-being. To achieve that we all need to strive to be honest, not just with others, but with ourselves. That responsibility does not end with Dan. The onus is on us all.
You can find out more about “This AS Life Live” by going to www.thisaslife.com. You can also watch the first installment of the series in the embedded video below.