What I personally find most rewarding in what I do, whether on-air, online or in print, is the opportunity to meet people who inspire, encourage and transform the lives of not only my audience, but myself, as well. These are the ones who have found a way to supersede the obstacles and challenges that have raised hurdles in their paths and have gone on to live a life that is Better Than Before.
That said, I had the good fortune recently of being introduced to a couple who have made a lasting impression on me, and I’d like for you to meet them, too. They are Shane and Hannah, soon-to-be-married YouTubers, writers, breakers of boundaries and world travelers.
Indeed, Squirmy (Hannah Aylward) and Grubs (Shane Burcaw) are humorous storytellers of their lively adventures and fighters for increased accessibility. Shane and Hannah met online three years ago and started their relationship long distance between Minneapolis and Pennsylvania. The two now live together in Minneapolis and are planning their upcoming wedding.
What makes this story truly exceptional is that Shane was born with spinal muscular atrophy (SMA), a genetic disease that affects nerve cells in the spinal cord that control muscles. Over time, it takes away the ability to walk, eat, or breathe, and affects people in different ways, depending on the type, age group, and other factors.
However, Shane and Hannah do not let this stand in their way of happiness. Here, in a heartfelt interview with this amazing couple, is their story:
JWM: Shane, when were you diagnosed, and what does this means for your day-to-day life?
SHANE: Essentially, people with SMA lose muscle tone and get weaker as they age. I was diagnosed when I was about a year old, and I’ve been using a motorized wheelchair since the age of two. Because of the weakness in my arms and legs, I need assistance with most activities of daily living, like getting dressed and using the bathroom. With that being said, though, SMA does not affect my cognitive or emotional functions, and with the help of assistive technology, I’ve lived a pretty “normal” life from the seat of my wheelchair.
JWM: What is the treatment outlook for someone with SMA?
SHANE: Recent breakthroughs in medical treatments have meant that people with SMA are living healthier lives than ever before. The basic idea of these treatments is to stop the progression of muscle deterioration, which is such an exciting outcome. There’s even an oral option being developed by Genentech which could be a game-changer for the SMA community.
JWM: Shifting to your relationship, Hannah, how did you and Shane meet?
HANNAH: I was enjoying a late-night YouTube binge during my freshman year of college when I came across a documentary about Shane and his work. I was immediately captivated by his personality and his humor, and I spent a few more hours reading his blog that was very popular at the time. I sent him an email that night to introduce myself and share how much we had in common, but I never expected we would end up engaged three years later!
JWM: How long have you been together, and how have each of your lives changed since you met?
HANNAH: We’ve been together for about 3.5 years, and so much has happened in that time. The biggest change is that we are now living together in Minneapolis, which is such a wonderful difference compared to our first two years of long distance.
SHANE: Another big change was the creation of our YouTube channel, “Squirmy and Grubs,” where we document the joys and challenges of our interabled relationship. We started the channel as a little hobby project, but it quickly grew to have over 470,000 subscribers, and making these videos is now a full-time job for the two of us. We love it!
JWM: Shane, Hannah is your primary caregiver now, right? Who was your caregiver before Hannah? And do you have any extra help in addition to Hannah?
SHANE: Yes, Hannah is my primary caregiver now, with a little help from our family and friends in the Minneapolis area when needed. My care isn’t too involved, and I’m self-sufficient for most of the day. I was living with my parents in Pennsylvania prior to moving out here to Minnesota. The transition from living with them to living with Hannah was surprisingly easy, and I’m so glad Hannah and I are now able to be together every day.
JWM: Hannah, tell us about day-to-day life for you and Shane.
HANNAH: Lately, it seems like every day has been different. Some days we are filming or editing our next YouTube video. Other days we are traveling to do speaking engagements at conferences and schools. In between, we are sending emails and taking phone calls from people who want to work with us. It’s exciting, and every day is an adventure.
JWM: What advice would you give to people out there who, like yourself, are providing care to a loved one?
HANNAH: For Shane and me, caregiving activities never really feel like caregiving because we are laughing and talking together the entire time. I don’t stop being Shane’s fiancée when I’m helping him get ready for bed or take a shower, so those moments of care just feel like another time of day that we get to enjoy each other’s company. My advice is to treat caregiving like you’re just spending time with a loved one.
JWM: You travel a lot – what extra planning or steps do you need to make when traveling?
HANNAH: There is so much extra planning that goes into the trips we take to ensure our transit and the destination are wheelchair accessible. We do lots of online research and make lots of phone calls to double-check what we find online. Many people don’t realize how many accessibility barriers still exist in our world, so we document all these challenges in our YouTube videos. Our hope is that raising awareness will lead to changes being made!
JWM: Shane, many of us – myself included – complain about little things that become way bigger by focusing on them. How do you keep such a positive outlook?
SHANE: I definitely complain, too, from time to time. I’m generally an optimist, but I acknowledge that I’m very privileged in my circumstances in life, which makes being an optimist a bit easier. I think overall, it’s best to never compare your own problems and challenges to those of others. Many people ~expect~ that my disability is a cause of great negativity in my life, and so they are surprised, and often inspired by the fact that I’m a happy person. That line of thinking is flawed. My disability rarely causes me to feel negative emotions. In fact, on any given day, I’m much more likely to be annoyed about traffic delays or professional frustrations than lamenting my disability.
JWM: What do you think is your key to success in your relationship, and what advice would you offer to others?
SHANE: We communicate really well with each other, both verbally and non-verbally. We face challenges as a team, rather than as opponents. We work hard to support each other and give selflessly to the relationship. And we laugh a lot. Making fun of each other is one of our favorite things to do, and we genuinely believe it makes our love stronger.
JWM: What’s in the future – marriage, kids…?
HANNAH: Yes to both! We are getting married in September 2020, and we are looking forward to growing our family in the future!
JWM: If you’re planning to have children, how do you envision your relationship changing?
HANNAH: We imagine there will be less time for cuddling and date nights. But the simple answer is we don’t know yet! We are looking forward to figuring out that process together, though.
JWM: Better Than Before is all about life events and changes that ultimately make you better than you were before. How would you relate that concept to your relationship?
SHANE: We both agree that our relationship has been an incredibly joyful and positive change in our lives. We support each other whole-heartedly. And adding that kind of love and security to our individual lives definitely made us better than we were before.
JWM: Thank you both for sharing your remarkable story and giving us all hope and encouragement that we, too, can overcome whatever obstacles and curveballs life throws in our way on the path to becoming Better Than Before.
I urge everyone to click onto https://www.gene.com/stories/understanding-sma to learn more about SMA and check out the vibrant, creative, and successful people with SMA who are out there, as Shane says, doing “cool things!”
