BLOOM: What’s been most challenging about growing up with spinal muscular atrophy?
Kevan Chandler: My greatest challenge growing up has been the stuff in my own heart. I believe the Lord gave me a sturdy heart to handle this life, the good and the bad of it. But I'm also not perfect, and I struggle with storms of frustration and doubt surrounding my disabilities. Everyone is broken, to some extent, so I think we all ask those questions of ‘What if?’ I call them reminders; reminders of my brokenness. And none of us like being reminded of how broken we are.
So, there's the small stuff, like when I drop a spoon or my neck let's out a small spasm. ‘You can't escape,’ they say in those nano-seconds, like sticky notes from brokenness strewn around the living room of life. Then there's the big stuff. I lost a friend to suicide a few years ago, and ridiculous as it may seem, a great battle within me was, ‘Could I have stopped him if I wasn't... like this?’
Questions of value and identity come into play, and these circumstances cloud my understanding of the truth, which is that my identity and value, my everything, is found in something—someone—far bigger than me or my disability. The Apostle Paul talks about our adoption as sons and daughters of God, and he refers to it as ‘the redemption of our bodies (Romans 8).’
Whatever is going on in this crazy little body of mine, I can hold fast to the assurance that the One who created me loves me more than I could ever imagine and it's that love that makes me who I am, not a disease or what I can and can't do. It's a beautiful, life-giving realization, but man is it hard to remember, and embrace for some reason! Fickle hearts. Fickle hearts.
BLOOM: Have your views on disability changed or evolved as you've grown up?
Kevan Chandler: A friend used to say, ‘Your parents forgot to tell you you were handicapped.’
My sister is disabled too, and our parents raised us to take on the world without a second thought. With that said, my overall view of disabilities has remained the same, which is that it's my reality, it's part of my situation, but it doesn't dictate my situation.
I don't ask, ‘What can I do?’ but ‘How can I do?’ Of course, as I've gotten older, the finer details have been shaped, as with anyone's perspective as they mature. The value of life (mine and others) has more weight, the question of ‘How’ becomes more intricate, and in many ways the stakes get higher on adventuring.
It was a huge blessing (and still is) to have my older sister going through life alongside me with many of the same challenges. We have an older brother, too, who is not disabled but has been a great ‘encourager’ and help over the years.
BLOOM: What is your job as a sound editor?
Kevan Chandler: The official title I prescribe to is Post Production Sound Editor. What this means is someone else records the material and then they send it to me and I clean it up. I do this mostly for podcasts. So, a podcast host will record a two-hour interview with a guest. They'll then send it to me online and ask me to turn it into two 30-minute episodes. I take out coughs and stutters and then I decide what content stays or goes to make it fit into the necessary timeframe. I do all of this freelance from home.
I do have a second job, which is writing novels and self-publishing (for now). So, I'll write a book and then do reading events or speaking tours to promote it.
BLOOM: Many kids with disabilities struggle to make friendships. It looks like you have great, close friends. Has it always been easy for you to make friends?
Kevan Chandler: Yes! Ha ha! My sister has always said I have a Tom Sawyer personality, very inclusive and magnetic. Mind you, this is just who I am, it's all I've ever known, so I don't really see it happening. I just love having people around, living life to the fullest and bringing folks into that experience.
I definitely see the struggle, though, and it goes back to your first question, really. I've been rejected and ignored, and it hurts like the dickens, but you gotta keep going. I promise, there are people who know how to love and are kind and will see past your imperfections, no matter how glaring they are. Part of this, though, is that you need to see past imperfections too—both yours and theirs. And I know that's hard. Really hard. But it's that heart issue, again, and it just needs to be dealt with. I promise, facing those insecurities and issues of pride and bitterness or self-pity, when you come out on the other side of it all, it'll be amazing!
BLOOM: Can you explain what the tagline for your trip means: ‘There's no 'I' in Kevan’
Kevan Chandler: When the idea of We Carry Kevan came together, the team and I wanted to make the message very clear that we couldn't do this venture on our own. We wanted it to be a community experience, and more than people just giving money, we wanted people to get involved in the story. I spell my name differently and have to correct folks all the time, to the point that it's a joke among my friends. So we took that joke and employed the old mantra ‘There is no ‘I’ in team’ and there you go!
BLOOM: Who got the idea for going backpacking and making it possible for you to go too?
Kevan Chandler: My friends have always carried me around when my chair couldn't go places, like upstairs to apartments or whatnot. So the idea of being without my wheelchair was nothing new. They just pick me up in their arms and go. But a few years ago, my friend Tom Troyer wanted to go ‘urban spelunking’ (exploring the sewer system), and he wanted me to go, but he was going to need both arms free for balance and climbing. So we came up with the backpack idea. It was the innovation and determination of Tom, really, that made it happen. I was just along for the ride.
BLOOM: You have four friends going with you—are these people you knew for a long time, or people you've met more recently?
Kevan Chandler: Tom, who had the sewer idea, is going with me, as well as Philip Keller, who was part of the sewer experience as well. Luke Thompson is joining us to film the experience, and I've known him for just as long. I've known all three for maybe four or five years, at least, through the North Carolina music scene. And I've known Ben Duvall for about three years, though he’s been my primary caregiver for the past two years, so we've gotten really close in that time.
BLOOM: Is it correct you're going to England, France and an island off Ireland?
Kevan Chandler: Yes, we will spend a week in France, then a week in England, with a short skip over to Scotland, and finally a week in Ireland with a visit to Skellig Michael.
BLOOM: What are some of the places where you'll be carried?
Kevan Chandler: We are planning to see some of the catacombs in Paris, and a great deal of the English countryside. In Ireland, I will be completely without my wheelchair, so I will be carried for all of that week.
BLOOM: Did you have a special backpack made that the others can wear on their back and carry you in?
Kevan Chandler: We settled on a pack from Deuter, called the Kid Carrier III. It's designed for toddlers up to 48 lbs, so we've made the purchase and are currently working on modifications to make it more comfortable and practical for both myself and the carrier. I weigh 65 lbs.
BLOOM: Are you also taking your wheelchair with you or are you ditching the wheelchair?
Kevan Chandler: I will have my wheelchair available for France and England, as some of those areas will be accessible. But we’ll then leave my chair in England while we go to Ireland and retrieve it on our way home.
BLOOM: You've raised over $26,000 of your goal of $35,000. Will that cover the cost of the trip for all of you—or what exactly does that cover?
Kevan Chandler: Yeah, we've been blown away by the financial support that's come in! The $35,000 will go toward a great many things. Plane tickets, the backpack, some hotels, transportation while we're there, plus a stipend for each of us as we are taking time off work. We are also using it for promotional travel before and after the trip, and the production of the film and book we plan to release afterward.
BLOOM: Were donors primarily people you knew already or people who read about your story?
Kevan Chandler: It's been a mix of family, friends, friends of friends, and complete strangers. Now that we've experienced some media coverage, the pull of strangers has been much greater. And they haven't only given money, but they've also contacted us to talk or offer us places to stay. Some offer us dinner if we'll be in their area, and some just want to meet us and hang out while we're there.
BLOOM: What happens after the trip?
Kevan Chandler: We hope to release a documentary film about the trip, as well as a book, and tour these things to tell our story. And we've heard from a lot of folks from other countries that we may visit later as well. We have some other big, long-term plans in mind for the We Carry Kevan brand, bouncing around, but these are the concrete plans for now. Ultimately, we just want to keep spreading the word, getting people involved, and telling this story of brotherly love and self-sacrifice.
To learn more, visit the We Carry Kevan website and blog.