Why we walk: Because of Community

When Mom and I started talking about reasons why we walk, this one didn't come up as naturally. I think it feels a bit selfish to come out so quickly and say something like "we walk because it shows us that people care about us." The undertones of this statement could have shades of selfishness and seem attention-seeking. It's hard in the age of social media and self-promotion to be so bold as to say 'we need people to pay attention to us' or rally around a cause in a way that isn't trite or insincere.

But to fail to be honest about our need for the presence of our community (I think to the biblical phrase 'brotherhood and sisterhood of saints') would be disingenuous. Mom, Charlie, Corey, Asher, and I are in constant need of community - and walk day is just one of these many instances.

When folks leave comments of encouragement, send emails in support, make a donation, or come out to walk with us - we are genuinely lifted and propelled forward into our work. Things like honesty and vulnerability are really hard to speak about in a large-scale context, and Alzheimer's disease is a great exposer of vulnerability. So, when folks come alongside us through this journey each September and remind us that they can stare the impact of Alzheimer's straight-on without becoming stymied by inaction, we feel emboldened. When you respond by raising awareness and funding in the hopes of finding a cure, we feel empowered.

 Additionally, longevity and isolation are some of the terrible monsters that rear their heads when facing chronic illness. As humans it is hard to keep something on the forefront of our mind for more than a few weeks. So, I think we tend to the immediacy of a friend's loss or passing illness well - we can bring soup or a casserole, send a card, and lift up quick prayers. Unfortunately, we really stink at 'the art of presence' (myself included here). It's easy to be a 'firefighter', but much harder to be a 'builder.' However, from our experience we crave the support of folks who can sustain - provide ongoing support, even in small, simple ways.

And so the walk allows Mom and I to speak every September - to remind folks of our ongoing need for support, and to be amazed and humbled by how generously our community responds. Know that the ability to speak is a lifeline for us. As the gaps and spaces widen for Mom, she can still come forward and speak boldly and energetically even when she can't find words. You give her space in her pauses as you watch our videos. And when you stand with us on walk day you remind her that while the growing voids are awful (and nothing can make that not suck) that her friends and family are willing to stand within the spaces. We will try to fill voids as much as we can with our presence, love, and understanding. We will still be here even when she struggles to engage and respond to our presence. We won't fade away along with her memories, even though the nature of our relationship may have to change.

And lastly - you are a lifeline to me (and Charlie). I've written in the past about how vulnerability and gratitude through this illness have bound me deeply to community and kept me tethered to sanity during the really hard points of the past years. But it needs to be said again - I could not do this on a daily basis without you. And the walk is just one small part of that - this year, it's connected me with folks at my church who have similar stories and made space for conversations with longtime friends about recent challenges. Last year, a friend sent me such a thoughtful email in response that I have read over it and thought of it on a regular basis, especially on the days when I've felt particularly lonely.

Most importantly, walk day reminds us of our community - but while the palpable encouragement we

derive from folks walking alongside us, holding hands and linking arms with us on September 26th buoys our spirits - it is just one small part of the story of how you help us. The story of your response to Mom's illness is full of silent, generous gifts -- weekly casseroles from my aunt's friends when we hit a particularly trying couple of months, weekly meals from my aunt and grandparents - and countless other times where they have sacrificed their weekends and time to allow Charlie and I to get away. Out of town friends have made a point to get to Lexington to come visit, just because they know quality time and their friendship are life-giving to Charlie and I. And Mom's friends are legion - constantly inviting her to meals and events. Her social calendar is as full as ever, and it reminds Mom that she is loved and keeps her busy and excited about the days ahead.

And so, point two:
2. We walk because of community.

We walk because of you all. Thank you for coming alongside us through this journey.