After my multiple sclerosis diagnosis in 1997, I knew that I would be faced with obstacles in my life, but didn't know when they would occur or what they would be. I was a school teacher and coach, a former college athlete and father of two daughters. In my mind…I was still invincible.
In 1999 my son was born, and like most fathers I still remember dreaming of the day I would get to run alongside him, teaching him how to ride his bike. Four years later that day came. I placed my hand on his back and together we took off down the street ready for his first ride…or so I thought. My legs simply would not move. My son fell over on his bike and my strong legs could not run to help him. That was the moment I realized that MS was going to affect me more than I had anticipated. It had slowed me down and tainted a moment I had looked forward to for years.
My son is now 15 and he doesn’t know a dad that doesn’t have MS. Both he and his sisters, along with my wife, have grown into strong MS advocates attending State Action Day in Kansas as well as Walk MS events for almost two decades. Having the support of your family at home is important, but so is physically having a home that can support your family – a home that can help you live your best life despite the diagnosis.
For years we lived in a California style spilt-level ranch house that had four flights of stairs. We loved this home, but it was not a safe space for me to navigate. The doorways were not large enough for my chair, the stairs were difficult to climb and falls were frequent and dangerous. I was limited to life on the first floor of our home.
Last year we bid adieu to our family home and prepared to make memories in a new space. Upon arriving, I found out that my family and church had pitched in to build a small ramp at the entrance of our home so that I could cross the threshold in my chair with ease. In addition, we installed hand rails on my shower, replaced the tub with a walk-in shower, installed a larger stool and widened the door to the master bathroom so that my chair could fit through the door. I didn’t think we would fall in love with a house like we loved our last home, but we did! For the first time in several years, I could finally move around to every corner of our home without relying on assistance.
Knowing my story, the National MS Society reached out to me about moving forward with a home modification tax credit bill known as the Kansas Disabled Access Tax Credit. Last year, I was asked to speak and tell my story at Kansas MS Action Day. Not only did I get to speak in front of fellow MS activists, but I was invited to speak in front of the Senate State Tax committee. As I spoke, I looked around the room and was overwhelmed by the concern and "want to help" expressions on the faces of committee members.
The president of the committee took the floor and said, “We don’t usually do this, but I want to move this bill forward and vote right now to move this out of committee.” The group voted unanimously.
Sadly, the bill did not move to the House before the session had ended that year. During the interim time I made it my mission to get to know state representative JR Claeys, who represented my previous home's district of Salina, KS. As the new legislative session began, he and his colleagues made sure to get the bill moving and made it retroactive so that people who made modifications in 2013 could benefit as well. It was passed in 2014 through both houses and signed into law by Governor Brownback. It was exhilarating!
It’s common knowledge that home modifications serve people living with disabilities – but they also serve their families. Being able to make these modifications has given my family the comfort of knowing that I am safe. They know that together we can live in this house longer together – as a family. Modifying our home has allowed me to take the initiative to assist myself. My family no longer needs to worry about leaving me alone at home, because the vast majority of our home is accessible.