As we prepare to celebrate Thanksgiving, our friend Whitney Roper, physical therapist at the Washington University ALS Clinic, shares some recent and not-so-recent experiences that reminded her to be thankful for what she has, and to remember the challenges people with ALS face on a daily basis.
By Whitney Roper, PT, DPT, ATC
In my first semester in Physical Therapy school many moons ago, during the first week of the very first semester, my Neurology professor entered our classroom and handed each of us a seemingly easy assignment. Each and every one of us was given an assigned, individualized public transportation route to navigate. We were all perplexed. The catch was this: we had to navigate these routes while in a manual wheelchair. In the room next to us that day was a fleet of various manual wheelchairs for the taking. During the next few days, we would all be spending some time sorting through seemingly easy tasks such as hopping a curb, preventing your chair from tipping backward, entering a building through a non-handicap accessible door. The list goes on and on. Then, off we went to complete our assignment. My assignment started out pretty well and ended with two skinned knees. I’ll spare you all the details. It was THIS one lesson in particular that really set the tone for the next three years as I went on to earn my doctoral degree. It was one of the most challenging, yet humbling experiences and it taught me an entirely new level of empathy that is nearly impossible to teach without LIVING the experience. Being immersed in this experience is so powerful and I challenge all of us to try to live a day in the life of a patient.
Fast forward to the present. In the hustle and bustle of post-COVID life as a busy boy mom of four and full-time physical therapist, it became easy to lose sight of that drive which brought me into this career in the first place. Something somehow needed to change, I just couldn’t figure out the “how.” Then it hit me like a ton of bricks. I had to undergo a major hip surgery. Me, of all people. One of the most stubborn, strong-willed people. Ask my family, friends, and colleagues. After surgery, I was confined to my home mostly lying down and “resting,” basically doing all things far from my norm. No driving. No housekeeping. No bending, lifting, twisting of any kind. No bending over to pick up crayons or spilled milk. No walking down to the basement to do the daily loads of laundry (yes, that’s right, DAILY). No standing up to take a shower. No standing up to get dressed. No cooking or kitchen clean up (okay, I’m actually not going to complain about that one). No putting on my socks or tying my shoes. No physically bringing my children up to their beds for story time and prayers. If I were going to return to campus earlier than my anticipated 6-week period of time at home, I would have to do so with the help of a manual wheelchair. Does this level of stubbornness sound familiar to any of you? It is THIS level of stubbornness that is both a blessing and a curse.
Several weeks went by. I adapted. My stubbornness and strong will drove my creativity and ingenuity. I was desperate to be as involved as I could be. My family needed me. I bought a basket for my rolling walker and in that basket was my travel mug for coffee, a bottle of water, diapers, wipes, Clorox wipes, pens, pencils, crayons, you name it and it was in there. I even tucked my reacher tool somehow into my belt loop of my pants! I was determined to be as independent as possible and help out whenever and wherever I could. My two-year old threw a temper tantrum with crayons all over the floor. What did I do? I grabbed my reacher tool and one by one, I picked up each of those crayons as I gave him an incredibly stern look.
There were some days when showering and getting dressed were the only activities I could complete. I just had NO energy. I dove into the details of these seemingly impossible daily tasks because this is exactly what I do with our patients and families dealing with ALS. I break down their day, the activities they want to continue doing, finding those things that bring them meaning and joy, and we somehow figure out a way to keep them doing it for as long as we can creatively make it possible.
Community public access for our members living with a physical disability is lacking, to say the least. For many, navigating our communities is far more challenging and exhausting than one would think. Perhaps you are living with ALS and are still walking, but the door to enter that one building doesn’t have a touch pad. Maybe the door is SO HEAVY and while you physically may be upright and walking, you can barely grasp the door handle, much less attempt to swing it open. It is this topic which brings me to my very last point, which is my experience of using a manual wheelchair post-operatively. I graciously had one on loan during my recovery in an effort to bring me back to campus and to clinic sooner. It was during this particular instance when it all came full circle for me. It finally hit me. This experience brought me back to those first days of physical therapy school when I was immersed in the powerful challenge that so many of our patients, friends, and loved ones are faced with every single day. These struggles in the wheelchair, the inability to walk, the use of assistive devices and adaptive tools to make me “modified independent.” These experiences reignited the flame that had been barely flickering for so long. I regained that drive and motivation to keep making a difference for patients. Accessibility is something that those without physical disabilities simply take for granted.
We can all do so much better. We can do more for our patients if we really understand and live in their shoes, even for a day. It is only then that we can begin to understand the daily struggles our patients face in their uphill battle for which they are courageously fighting. So, I challenge each of you to live the life of those we love who are living with ALS.
I promise that you will gain perspective, empathy, respect, and more drive than ever before to continue fighting until there’s a cure.
ALS CONNECT 