Welcome to our virtual community! Start by browsing through the personal stories featured here.
We have organized these stories into two categories: Your Stories -- stories sent to us at the Spondylitis Association of America -- and selections from The Faces of Ankylosing Spondylitis project. You will also
find episodes of
AS Life Live!”
an online talk show for people with AS hosted by Dan
Reynolds – an AS patient and lead singer of the rock band Imagine Dragons.
We’d love your story as well! Send it to us at Programs@spondylitis.org
By Cookie Hopper
Thursday, August 17, 2017
Imagine Dragons lead singer Dan Reynolds discusses living with spondylitis with AS advocate Cookie Hopper.
Dan: Welcome to This AS Life Live! over the past few episodes I’ve been able to meet with some incredible and inspiring people who live with AS like myself, and today is no different. I’m going to be meeting with Cookie Hooper who, after being diagnosed with AS, has gone on to be an advocate for people like myself, all over the world. She loves the outdoors, she loves gardens, so I invited her to meet with us today at this beautiful park. I also heard that Cookie likes to do something nice for somebody every day, so I’m gonna go grab some lemonade for her. I hope she likes it, let’s go! Cookie!
Cookie: Hello, Mr. Dan.
Dan: How are you?
Cookie: I’m fine.
Dan: I brought you some lemonade, I hope you like!
Cookie: Oh, thank you so much.
Dan: Mind if I join you?
Cookie: Oh, please do. How are you doing?
Dan: I’m wonderful. I just want to start, before we even get into anything, I just want to tell you, you are incredible. I’ve read your work, what you’ve done, and just from the whole AS community, thank you.
Cookie: Oh, no, thank you, I appreciate the opportunity.
Dan: Can you tell me about your Garden of Gratitude [laughs]?
Cookie: Oh [laughs]. The Garden of Gratitude came from—and I appreciate being here ‘cause it is so beautiful.
Dan: Yes it is, right?
Cookie: It’s what I envisioned for the Garden of Gratitude. When you wake up hurting and it takes you 30 minutes to get out of bed, you’re going to focus on the negativity. And I, I didn’t want to do that. I wanted to be able to be thankful for the lemonade you brought me today, and things like that. So I decided to do a Garden of Gratitude, because I couldn’t physically garden anymore. So each day I would take away something that happened, or a kindness or a smile someone gave me, or just that direct look in your face that they acknowledge your pain and smile at you. I would write about that. It was just a way to see the positivities. And the more you do that and focus on that, that’s what you carry instead of the darkness. Because it becomes lighter for you. It really does.
Dan: Tell me a little bit about yourself. Tell me, uh, the first time that you felt the symptoms of AS. How old were you, what did it feel like? Take me back.
Cookie: I was probably in my twenties when I started having severe foot pain, and that’s when I realized something was going wrong. But it wasn’t until I was in my forties that I was diagnosed.
Dan: Wow. So did you see doctors, or…
Cookie: All the time, and, uh.
Dan: What did they tell you?
Cookie: Well, that I was depressed or overweight, or I needed to be more active, or it was hormonal, or in my head, or just needed to—I don’t know. They were just very dismissive.
Dan: They didn’t have answers for you.
Cookie: No, not at all. They didn’t take you seriously.
Dan: Despite your difficult journey, you have gone on to become such a face for AS, such an advocate for AS. Um, tell me a little bit about Faces of AS.
Cookie: I wanted to give people safe haven. And I wanted the world to know the courage that it takes, and that in spite of what we deal with that we still have hope of living a quality life. And I wanted people to have a place to speak their truth. And I made the comment that no one would ever take us seriously until someone put a face to this disease, that we were more than a blue ribbon, we were more than an awareness project.
Dan: I think community is so important for people who are dealing with, with AS. And so to see that you created a community, a place where people could unload, or they could feel heard, instead of, you know, being alone in the disease, I think that’s just so important.
Cookie: It’s family. I want them to be validated. Because we have an invisible disease and a visible society, and we all live as shadows.
Dan: So what advice would you give to other mothers, grandmothers?
Cookie: Well, for everybody, the best, the best that you can do when you look in the mirror and know that you’ve done your best is as good as anybody else’s best. Whether it’s all I could do today was sit in bed with you and read a story, it’s just as good as anything you can do. I think that’s what we need to remember. Your best is your best.
Dan: If you could describe your AS in one word, what would that be?
Cookie: Just one? Empowering.
Cookie: Because it has forced me and gave me no choice but to dig down deep and know who I am. It puts you in tough situations, and you, I mean, you learn what you’re made of. It’s been, it’s been empowering, because I, it’s put me in, it’s forced me to be a better person. Uh, it’s forced me to realize that I’m not Superwoman, I’m human.
Dan: I think you are Superwoman, but okay.
Cookie: Where’s my cape?
Dan: What would you say to AS right now if it had a face?
Cookie: It does have a face, our face. I would say thank you, because it has forced me to know who I am inside. It, it has put me in circumstances that I have to know who I am really in the core of me, not what society sees me as.
Dan: What does it mean to you to live it, an AS-adjusted life?
Cookie: Well, I have, I’ve learned to forgive myself for being human. You’re not what happens to you. You’re what you choose to be. And it’s a choice. You can’t change it. I mean, you can’t. But you can change how you embrace it, and how you let it affect you. And I don’t want it to control me.
Dan: You have been just so inspiring, and you’re so filled with just love and enlightenment, and I just feel very grateful to be able to have spent these, this, this little bit of time with you. Thank you so much.
Cookie: Oh, thank you so much. I appreciate you.
Dan: And I will see you again soon.
Cookie: Thank you.
Dan: And stay well. Keep spreading your love and building the community. Well, today has been incredibly moving and inspiring for me, and hopefully for you as well. Cookie is incredible, is doing so much for this AS community, and we are so grateful for her. I’m off now to meet with someone else, to hear about their AS life, and in the meantime as always, I encourage you to go to ThisASLife.com for more episodes, and to share it on your social medias. Take care!
9/24/2017 10:13 AM
Thank you Cookie & Dan!
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