It was the afternoon of September 13, 2015, and I stood with others near the loading and unloading area of the train station. A man standing nearby started up a conversation by asking if I was also awaiting the next train arrival. I explained I was actually waiting for the current train’s departure and added how my dear friend had come up for the weekend to join me in the South Sound Walk to End Alzheimer’s event at UPS. Attired in my purple Walk to End Alzheimer’s T-shirt, he took a good look at it and then chuckled slightly before making a comment I never anticipated. “So is that something where people are just walking around and around and around in circles until they forget why they’re walking and then they forget that they even forgot?!” A bigger chuckle from him now that he was done and so pleased with his creative comic moment. I bit my lip and looked down for a moment. It felt like time froze as I pondered how to respond. Had he really just said that? Why would someone make a joke about this deadly disease? Do people make jokes about cancer and Relay for Life? Did it even cross his mind that a person might do this after suffering a loss? Lord, give me grace. Help me respond, Mom.
I took a deep breath, looked up, and responded, “No, that’s not really how this event works. Many of those walking have actually lost someone to the disease and those who have it and are walking—if they still can, for you see it doesn’t just affect memory but how the brain works with every single part of the body eventually—well, they have caregivers with them as they walk, keeping a close watch on them at all times. You know, there are actually a lot of people who feel this is a worthy cause to support. In fact the whole group that walked in Tacoma raised over $105,000 at this point and it will likely be more as donations continue to be added in the next few weeks as well. My small team of four even raised over $1500.” He hmmphed and then when he asked me if I participated in it because it was a “corporate thing,” a choice made to make my business look good, I decided to let him know just how personal this choice to walk was for me.
I looked him in the eye with tears forming in mine and explained how my mom had had this disease and next month would be the first anniversary of her death due to complications from Alzheimer’s. He sighed now, looking quite embarrassed by his joke, understanding the unintended slight he had made. I had spoken softly though in my response, and continued that way, no condemnation in my tone, adding a few basic facts about Alzheimer’s for him to ponder along with my personal connection. The statistics tip of the iceberg really—but it was an effective response nonetheless.
More facts can be found at http://www.alz.org/facts/overview.aspHe looked down for a moment and then tried to look up and meet my gaze. “You don’t really know about it…um…or…want to know about it…until, well…until maybe you’re going through it, huh?” stammered the man finally shaking off the guilt of embarrassment and looking me in the eyes again.
“Well, I guess that’s true sometimes, for some people,” I slowly responded trying not to lose composure as the emotional impact of the day was starting to weigh on me. “But thankfully the Alzheimer’s Association and many of us affected by this disease are trying to change that by creating awareness with events like these.”
His face softened and he replied for the first time with what I felt was true sincerity and a much larger dash of humanity in his tone, “Well, bless you then. Bless you.”
I smiled, turned to wave my friend off as his train finally departed, and then walked to my car feeling I’d handled that moment as well as I could have but wondered how many more just do not understand. Yes, I had made one man at a train station more aware of Alzheimer’s by just attaching a personal face to a disease that—like he pointed out—nobody really wanted to hear about. The very reason it is essential they do hear about it. Not for the first time I was reminded that Alzheimer’s awareness begins with those of us who have walked this journey. I know so many folks are tired from dealing with Alzheimer’s, the long goodbye taking such a toll on us mentally, emotionally, and physically, but no matter what stage we are in with our loved ones or ourselves, our stories need to be shared at some point even if just with one person at a time. The stigma surrounding this disease needs to be undone. And as that happens, maybe, just maybe, the healing of hearts broken from this disease will begin as well. This is a big reason why I do this walk and why I tell my story—my mom’s story.