Today’s post is located on the BraunAbility Blog website. I discuss how my disability has impacted, not only my life, but the lives of my entire family in major ways. Thanks to my amazing parents, siblings, and the incredible bond we share however, we always find a way to focus on what is really important in life and make things work. By working together and combining our efforts, the five of us are able to overcome the obstacles presented by my physical limitations and lead fulfilling, happy lives together.
***There was an issue with posting this article on the BraunAbility blog, as they are in the process of remodeling their website, so I am posting it here instead. My apologies for any confusion.***
Even though I am fortunate to have a van with a Braun hydraulic lift that allows me to travel as I please, this does not mean that my disability does not still present obstacles that make it difficult for me to travel, especially long distances. Without even considering the logistical issues that come with venturing far from my home, like arranging lodging that will meet my needs, finding a caregiver to travel with me, and being sure to pack enough medication and medical supplies, the physical toll that spending all day travelling has on my fragile, weak body is an issue that can make driving great distances very tough on me physically. While I can easily recover from shorter trips in my van, the cumulative effects of the repeated abuse from spending hours getting tossed around on the road are much harder on my body. Due to the nature of my disability and my chronic pain, every crack, pothole, and bump I hit during these long days on the highway hits me like a body blow from Mike Tyson, which for short trips is not a big issue, but withstanding this over an extended period of time is a completely different story. The total effect of repeatedly getting bounced around for hours on the freeway often results in me having to spend two to three pain filled days recovering for every day I spend on the road, so unless my destination is something really special, the trip is probably not worth it. Since I cannot travel long distances and live more than 600 miles away from my family, you may think that I lead a very isolated life having no way to visit my family for holidays and such. And for most people this may definitely be the case, but thanks to my incredible family and by making the most of the distances I can travel thanks to having my own vehicle, I have been able to not only maintain, but improve, my familial relationships and enjoy a fulfilling social life despite my inability to spend long days on the road.
Up until a couple years ago when my body could no longer handle the long drive to my parent’s home, like most families, during the Holidays my siblings and I would all trek to my parent’s house to spend time together as a family. These were always fun visits as they allowed us to practice our family’s Christmas traditions, escape from our busy schedules, and retreat for a few days back to the simpler times of our childhood. Two years ago however, it was fairly obvious that me making the 12 hour drive home was not a good idea, which meant that we could no longer all get together at my folks like usual. My phenomenal family however, was not about to let my inability to make this lengthy journey stop us from enjoying the Holidays as a group, so they adopted the old saying, “If you can’t take Muhammad to the mountain, you bring the mountain to Muhammad.”
Instead of everyone journeying to my parent’s house in Indiana, my loving mother, father, and siblings all travelled to my home here in Kansas City for Christmas. This allowed me to avoid having to spend all day on the road, while also letting us celebrate together as a family. While they were making arrangements to head my way, I was making the most of the mobility my van provides me to create the most festive atmosphere as I could for them. Having my own vehicle allowed me to make the necessary trips to do things like pick up the ingredients to make our favorite Holiday treats and shop for tinsel, lights, and other items to decorate my apartment. My ability to make these short trips allowed me to cook the same foods that my mom would have made back home and decorate my apartment like Santa’s workshop at Macy’s, which created a Winter Wonderland for everyone to enjoy. My family’s willingness to modify our Christmas celebration to accommodate my disability, along with me maximizing my mobility to run errands and such, allowed us to have a wonderful Christmas together despite the obstacles posed by my physical limitations. While doing all of this allowed us to continue our family customs, spend Christmas together, and enjoy the Holidays though, the most important thing was that even though we were not in the same city as usual, we were all together. In the grand scheme of things, this is really all that mattered in the end. Regardless of where we meet, so long as the five of us are together we know we will be happy.
This was our second year of holding our family’s Christmas gathering at my apartment, and I am happy to say that this year was even better than the first. Not only did I avoid having to spend a long day getting beaten up on the road, but we were also able to carry out our family traditions of putting up the Christmas tree on Thanksgiving night, opening gifts one at a time Christmas morning, and watching our favorite Holiday movies (“Elf,” “Christmas Vacation,” “Rudolph the Red-nosed Reindeer,” etc.) together as a family. Even though I would like to think it was my improved decorations and other preparations that made our family Christmas so great this year, the truth is that the ornaments, garland, and Santa shaped sugar cookies had little to do with it. It was our strong family bond and our ability to focus on what I can do instead of what my disability takes away that really made the difference. In the end, the thing that makes the Holiday Season feel so special is that we are all together around our family Christmas tree on December 25th. No matter what city we are in, how many miles of tinsel we hang, or how much Christmas fudge we make (and eat), so long as the five of us get to wake up Christmas morning and sit together around our tree, it will feel like Christmas.