Village, tribe, flock, whatever you call it, once you find it… it’s yours. Such is our ALS village, it is where I currently reside, Meg even calls me its mayor, affectionately. Regardless, this community loves hard, and is extremely protective. Yes, it is a village no one wishes to reside in, unfortunately it keeps growing. As such it is not immune from pain, in fact, the town charter is founded on pain and suffering. One could say that the price of admission is hopelessness. Many who reside here often hold on to their entry ticket and dwell there. For others, we fling the ticket away and buckle up for the ride. Don’t get me wrong here, I’m simply deflecting using humor. Sort of like spritzing a bit of Poopourie on a massive, well you know. Beneath the fragrance is still a pile of poo. Anywho, back to the village.

This village of ours, is connected through a variety of networks. Regardless of how we connect, it is instant when we do . This due to three innocuous letters. Letters, that in any other configuration, do not spell death. This is the tenuous yet unbreakable bond; the ultimate oxymoron! Let’s try this one, “it takes us knowing that we are dying, to learn how to live.” Sadly this oh so true. But, the connections we make, oh my.

This is one very important reason for Meg and I traveling in our land yacht, Big Blue. Of course we are ticking things off our bucket list, boy are we! Redwood Forest, Niagara Falls, Florida Keys, The Grand Hotel, NY City, Chicago, Philadelphia and so many more. But the people we meet, and not just those affected by ALS, but regular folks, strangers. Everywhere we go, we are greeted by what I call Angeles among us. Honestly, that’s the only way I can describe them. As human beings, we must step out of our own minds and be open to others goodness. It’s there, hiding behind our biases, fears and external stimuli.

Ultimately the relationships we create, no matter how brief; when based on the knowledge of our own demise, are strong. Eventually, when we experience the loss of one in our village, it hits. The blunt truth about this is that we are on the same path. No matter the pace of our progression, currently there is no reprieve whatsoever. I have lived with my ALS for nearly 9 years, and continue to experience this loss. I can only imagine what those living with this disease longer feel. There is a considerable amount of survivors guilt.

The only thing that I can offer is to live a good life in service of others, to honor the memory of those that precede us.

I won’t share specifically for whom I dedicate this reflection to. It would exclude to many. But they and their family are in our thoughts and prayers. Lastly, I would like to encourage you to connect with others, whether a fellow patient or caregiver. You will create an indelibly strong friendship, one that can withstand long periods of silence. For in those moments, volumes are shared without a single word.

TJO