Navigating Marriage from the Seat of a Chair by Bert Burns

Bert, Joy, Will and Emma acted as LASCI’s reporters in London during the 2012 Paralympics.

Editor’s Note:  This is our second article in a series on dating and relationships.  The first story discussed dating, and this one is about marriage.  Now that you’ ve found your special someone, you might be talking about getting hitched.  Below, LASCI founder Bert Burns, a C6-7 quadriplegic, shares his thoughts on navigating marriage as he relays some personal examples from his own 17-year relationship that began the day he laid eyes on a young recreation therapist named Joy Wetzler.

Q:  As a couple approaches the idea of marriage, what advice would you give for handling family members who are concerned about their loved one marrying a person with a disability?

A:  It’s pretty common for family members to inject their opinions and concerns into your relationship.  This happens with everyone, not just couples that include a person with a disability.  In this case, I say get to know the family of your significant other very well, and let them get to know you. Show them that you’re a regular person who just happens to be rolling, not walking. Show them that and make sure they know you’re looking out for the best interests of their son or daughter.  You love their son or daughter just as much as anyone else would.  Show them how you can make your life together work so it’s not a burden on your spouse all the time.  At the end of the day, concerns are just that. But your relationship is between you and the person you love, and what you do with it is up to the two of you – assuming that you are both over 18.

Q:  How do you adjust your living arrangements to move in together, after marriage or if you choose to do so beforehand?

A: Most of the time, a couple will decide to move together into the home of the person who’s using the wheelchair because it’s already accessible.  The other person’s home may be too, so you just have to decide which place is better in terms of accessibility and still makes you happy as your home.  The biggest concerns when choosing a place to live usually revolve around access to the bathroom and kitchen areas.  Most of the time, couples choose one-level homes or an apartment on the ground floor. If you are moving into a high rise, make sure there’s an elevator.

During LASCI events, participants will often ask Bert about dating, marriage, parenting and other questions about family relationships.

Q: How do you pop “The Question”?

A: Everyone is different, that experience is no different than if you’re able bodied.  As a guy in a wheelchair, you don’t get down on one knee but everything else is the same.

In my case, I met my wife Joy while I was on a business trip to Kansas City in 1995. The day I came into The Rehabilitation Center of Kansas City, I met Joy because she worked there as a recreational therapist. I happened to see her working and thought, I need to go talk to her; she’s pretty. And that’s what I did!

We had a whirlwind relationship from the very first day we met. I made a big to-do of our engagement, arranging a special dinner at Cinderella’s castle at Disneyland. I had Cinderella deliver the ring in a glass slipper.

How you propose depends on your personality and what you like. Make it yours and make it unique.

Joy and Bert tackled parenting as a team, and that came in handy because they had twins!

Q: What are some things we should consider when having “the kid talk”?

A: Are you both working? Are you ready for children? Who is going to be the primary caregiver for the kids or are you splitting the duties?  Set all of that up before you decide to have kids.  Talk about the process of having kids before you try. Sometimes things work normal and you’ll be fine.  Sometimes you need alternative medicine like in vitro. Adoption is an option too.  Some of my friends have their own children together and adopted too.  There are so many ways to make a family together, be open to all of your options!

Q: What is parenting like from the perspective of using a wheelchair?

A: Personally, I’m a really involved dad and try to stay busy with the kids a lot and give Joy a lot of breaks.

For example, when my children were just born, I had adaptive changing tables and cribs made for me, so I could reach the babies more easily.  I would roll up under the crib that was raised to be accessible for me – and the side would swing open like a door so I could roll up and slide a kid right off onto my lap. I could roll under the changing table too, and I had the diaper materials ready on each side so I could take of business.

My kids, Will and Emma, see me like any other dad.  Emma recently wrote a paper for a school project where she talks about the way she sees me as a father, and it meant so much to me. She says, “Why walk when you can roll?” Here is her take on having a parent who uses a wheelchair: http://www.uromed.com/blog/2013/02/21/why-walk-when-you-can-roll/

Bert and Joy like taking trips together that allow both of them to enjoy quality time together.

Q: What are some keys to success for a long-lasting marriage?

A: Same as any marriage, the keys to success are the same.  They revolve around talking and communication.  Also, don’t depend on the able-bodied spouse to be your caregiver. You married them to be your spouse. If you want a nurse, go get one.  That keeps them from feeling overburdened.

Keep in mind also that your loved one married someone who uses a wheelchair. They married a person , not a patient. So if it’s something you can do, do it for yourself. It will make your relationship healthier.

In our case, Joy and I focus on work arounds for any can’t-dos with can-dos. I’m lucky in that I can maintain my independence and am able to do almost everything on my own, but there are still things that I sometimes can’t do.

When we go on vacation, for example, walks on the beach and hikes into the mountains are out of the question.  So instead, we go on cruises, hang by the pool, scuba dive and snow ski together.  Our quality time together works out just fine!

Fantastic words of advice for any relationship!

Q: Would you recommend counseling or other support programs for marriages that are having trouble?

A: Yes, absolutely! Before you get married, I strongly recommend pre-marital counseling as a way to get any major issues out on the table beforehand.

If marriage or sexual health counseling is something that might help your current relationship, I’d recommend Dr. Mitch Tepper. He brings a lifetime of first-hand experience with chronic conditions and disability to his work. After growing up with Crohn’s Disease (IBD), Mitch was introduced to disability at age 20 after breaking his neck, causing him to also use a wheelchair.  Dr. Tepper is an American Association of Sexuality Educators, Counselors and Therapists (AASECT) Certified Sexuality Educator and AASECT Certified Sexuality Counselor, and a tireless advocate.  Contact Dr. Tepper at: http://mitchelltepper.com.

More Resources on Marriage
PN Magazine, published by the Paralyzed Veterans of America (PVA), has spotlighted UroMed founder Bert Burns and his family as part of their February 2012 issue. The article shares the story of two relationships that bloomed into successful marriages as a means of inspiration and hope for readers who also use wheelchairs.  Read the article, titled “Love Knows No Bounds” at http://uromed.com/content/PNFeb2012FullStoryV2LOWRES.pdf

Instead of Climbing on a Bull, Paraplegic Wade Leslie Heads Outdoors

Wade Leslie grew up in a rodeo family.

Bullriding was in Wade Leslie’s blood

Editor’s Note: Wade Leslie, of Quincy, Washington, is the only man in the history of bull riding to ride a perfect ride. He and the bull scored 100 points each – all the points that can be scored by the bull and the rider in professional rodeo bull riding. Some say there is no possibility to score 100 points for a bull ride. Others who have seen the ride on video say that Leslie should not have been awarded 100 points for his ride. But the fact remains that in open competition against other bull riders in a professional rodeo event, Leslie and the bull, Wolfman Skoal, for 8 seconds were as perfect as they possibly could be. As a matter of fact, this year Leslie was inducted into the Rodeo Hall of Fame in a new category called Best Score. But what has happened to Leslie since that unbelievable ride? What does he ride now? What is his life like? Whatever has happened to the best bull rider in the history of the sport? This week we will learn about Leslie’s ride, the tragedies he’s suffered, the endurance he’s demonstrated and the world of the man who has ridden the perfect ride. Part 5 of a 5 part series. 

“I kind of got upset with the power chair, because it kept getting stuck in loose gravel, mud and soft dirt,” Leslie reports.  Most motorized chairs aren’t designed for off-road use. They are designed to run on pavement, but many people who are highly active before their accidents want to get back to the lifestyles they’ve once had. For Leslie, when he wasn’t riding bulls, traveling rodeos, working as a ranch hand or helping promote rodeo, his passions were hunting and fishing. As Leslie explains, “I took my power chair apart. I wanted to figure out how to get it to work, and what I could do to modify the chair to go off-road. I finally built my first off-road chair, which went back and forth to the drawing board several times.” Leslie changed several motors and experimented with different types of tires and treads. “I finally figured out how to build an ATV electric wheelchair,” Leslie reports. “I built a second ATV wheelchair for a fellow who lived on the coast of Washington, and he liked it. I built another ATV wheelchair that had 5- inch wide snow blower tires on the back and 10-inch caster wheels with suspension on the front. That wheelchair would climb and get you where you wanted to go. Today, my everyday chair has motorcycle tires on it. I’ve been tweaking it, so, that it will do a wheelie for about 10 feet before the front end comes down.” With his wheelie chair, when he puts it in gear, the chair rears-up just like a bull, then it comes down, and Leslie takes off. “I like this chair because it will jump and move when I want it to do that. This chair has two, 500-watt, electric motors on it right now. I’m building a 6×6 wheelchair for my buggy; it has four electric motors on it and two joy sticks. This new hunting and fishing buggy has a six-wheel drive and two motors on each side of the buggy with a chain drive to the center. The buggy is painted hunter orange. When I get the money, I’m going to have it re-upholstered. So, when I get out to a place I want to hunt, I can put on my camo green hunting clothes, and my hunter safety orange jacket, and I’m ready to hunt. This vehicle is great for deer and elk hunting. When I get the money, I’m going to put in to try and draw a tag for the special elk hunt and the special moose hunt.”

One of the ATV wheelchairs Wade built.

One of the ATV wheelchairs Wade built.

Now immediately you’ll think, “What is Leslie going to do if he’s successful?” Leslie laughs as he says, “I’ll pull out my cell phone, get on Pacific Bell and call one of my friends to come help me field dress, butcher and haul the animal back to town. However, I usually take someone with me when I got hunting. If I’m going on a hunt a long way from home, I always have someone with me. But, if I’m hunting close to home, I always have a cell phone, so I can call a friend.” Last hunting season was only the second year Leslie was able to hunt and fish in many years. Leslie also is an avid fly fisherman. “It was really disheartening when I only had a manual chair and couldn’t get down to the creek where I wanted to fish,” Leslie emphasizes. “But, now with my new ATV power chair, I can fish almost anywhere I want to once I find good spots on the creeks. Then where the bank makes a little rise, and I get as close to the edge of the creek as possible, I can reach the spots I want to fish with my fly rod. When I’m fishing, I always make sure I have someone with me in case I have a problem, but they mostly get in the creek and use the dip net to land the fish that I catch, and then we release the fish. I also fish in the improved fishing areas that have been built along many creeks for handicapped anglers.”

Leslie now builds battery-powered ATV wheelchairs for other people who need them. “Not everyone can buy a $30,000 4-wheel drive wheel chair, so, I am trying to build affordable ATV wheelchairs for people just like me who have very-little money but who love the outdoors. I basically try to give the chairs away just to help people out; because, I know what wanting a wheel chair that can go off-road and not being able to pay for it. So basically, I charge for parts and materials and charge a couple hundred dollars for labor. Or, a little bit more if the specially-designed chair requires more time to build.”

When we asked Leslie why he was building battery-powered ATV wheelchairs instead of gas-powered ATV wheelchairs? He explained, “There are many opportunities to hunt and fish on public lands here in the West, but some of the best places to hunt and fish don’t permit gasoline-powered engines of any kind. So, with these souped-up battery-powered wheelchairs, I can get to the good spots, and others can too.”

Being in a wheelchair hasn't stopped Wade from getting outdoors.

Being in a wheelchair hasn’t stopped Wade from getting outdoors.

To help other people who don’t have the financial means to get additional rehab and to test alternative procedures for spinal cord injury, Leslie has set up a non-profit, The Perfect Ride Medical Fund (www.perfectridemedicalfund.com). To learn more about Leslie, and see the wheelchairs he builds, the types of jewelry and spurs he makes and photos of his life and adventures, go to his webpage at www.100pointspurcompany.com. In addition to building wheelchairs, he’s also designing a float tube for the physically challenged. Using his love of fishing and desire to get off the bank, partnered with his mechanical skills, Leslie hopes to design, build and use a float tube with a trailer that will allow him to back a float tube into the water, and get in and out of the tube unassisted. “The float tube will consist of two pontoons and be constructed from wood,” Leslie reports. “The float tube also will have leg trays, so, you don’t have to put on waders, and the seat will be scooped-out for the lack of torso, so, people with upper body strength can row this device.” Leslie doesn’t plan to stop here. He’s developing and building other types of apparatuses to enable the disabled to get outdoors and participate in outdoor recreation. You also visit Leslie’s Facebook page, http://www.facebook.com/wade.leslie.7, to see many of his bull-riding pictures and other pictures of the various apparatuses he’s building. You can friend him too.

As of this writing, Leslie had just returned from the Pro Rodeo Hall of Fame where he was inducted into a new category – the highest scored ride! For his 100-point bull ride, he was presented with a plaque, and there also will be a plaque in the Pro Rodeo Hall of Fame to commemorate Leslie’s perfect bull ride. “This was the first new category added to the Pro Rodeo Hall of Fame in 50 years,” He explains.

 

About the Author: For the last 12 years, John E. Phillips of Vestavia, Alabama, has been a professional blogger for major companies, corporations and tourism associations throughout the nation. During his 24 years as Outdoor Editor for “The Birmingham Post-Herald” newspaper, he published more than 7,000 newspaper columns and sold more than 100,000 of his photos to newspapers, magazines and internet sites. He also hosted a radio show that was syndicated at 27 radio stations; created, wrote and sold a syndicated newspaper column that ran in 38 newspapers for more than a decade; and wrote and sold more than 30 books. Learn more at http://www.nighthawkpublications.com

Follow

Get every new post delivered to your Inbox.