Love: a verb

Our friends know that we place a primacy on written and spoken communication in our family, encouraging each of our kids to seize opportunities to do both even as they pursue their first interests. We believe, and hope it is true, that our children have grown up around words and, more importantly, to think about life’s meaning as it is expressed in words. I am not saying that we have perfect communication and are model parents engaged in complete understanding (certainly not me). But I believe we have tried to model truthfulness in word and action, because what we say (and why) informs what we do. And what we do is who we are. 

Deb and I each have Scripture that reflects deep convictions for us. For Deb, it comes from Romans, “Nothing can separate us from God’s love”; and Deb knows that the opening words of the Book of John are particularly meaningful to me: “In the beginning was the Word". Each year, at Christmas, that passage speaking of the mysterious progression of the Word to Flesh brings me to tears, because I have spent more time as I have grown thinking about its profound meaning and the role of language in our lives: why language developed in human beings, how stories were passed down orally for millennia, how it entered written form, and why it matters. The second line in John is even more evocative: “and the Word was with God.” To pause here for a trigger warning for any Agnostics or Atheists reading along, these are part of our firmament, as a couple. Tearing away these timbers, in this family at least, leaves us with no Williams Family in its present form; for it this mystery, and its claim on our lives, that has driven every key decision in our relationship for nearly four decades.

From truth-filled words and their meaning, we have acted out those words in our head; and our eventual actions are our witness to the world. My Dad said to me at an early age (and I paraphrase): “Profanity is the crutch of an impaired conversationalist.” I think he was making reference to the Commandment not to take God’s name in vain; but I also know that Dad rarely criticized another or used terms of contempt. When he “swore” he used euphemisms like “friggin’”. His Baptist upbringing baked into his soul a respect for the dignity of each human being. And it was evidenced in his actions, influenced by an inner dialogue of words that were encoded on him by his parents, what they believed about life, and his ultimate faith. For him to use words of derision or to shame another would have been unthinkable.

What does all this have to do with the course of Covid19, the Dow Jones Index, ALS, and this blog you are reading? 

This dance, expressed as language and acted out by each of us in our lives and informed by our belief structure, is mysterious and profound. And, right now, we are stepping across its threshold to a place where words must yield their primacy to other forms of expression.

Bulbar-onset ALS (bALS) moves symptomatically through the mouth and neck, slowly stealing one's ability to articulate language, progressing through the incredibly complex process of chewing and swallowing, and eventually bearing down on the breath of life. As I mentioned a month ago, Deb began taking Delsym in an off-label use to help with her speech. As with many treatments, it keeps progression at bay for a time. However, those of you with whom we have Zoomed know that ALS is relentless. Eventually, the reliance on spoken words must begin to yield to written words, gestures, and facial expressions. We are arriving at that long-dreaded place: water now needs to be enhanced by a thickener to make it safer to drink, and pills are now taken in spoonfuls of apple sauce. 

My brother, Craig, once said that watching our Aunt Doris cut an apple was like watching poetry. Doris was my father’s older sister. She was not the intellectual equal of her sister, Louise, who graduated from Colby Phi Beta Kappa during the Depression, financially underwritten by a woman in her church; but she was a dear soul who turned to nursing and endured the loss of a son. A few days ago, as I always try to do, I brought several bunches of tulips home from the market and sat quietly as Debbie lovingly snipped and arranged the flowers into a simple but welcoming arrangement in our kitchen. I watched her hands and was transformed in that moment to the presence of Doris Nelson, quietly breathing loving care into her hands, an embodiment of her deepest convictions and beliefs and love. Our home, as was true of her Mom's, is Deb’s canvas of love.

The emerging chapter for us will be a chapter written in actions. Telephone calls are being replaced by Zoom, and I know that we are on the edge of using Deb’s new iPad with its stylus so that she can write what she cannot easily say. A friend who endured this journey several years ago said that his wife called it her Boogie Board. I like that term and we will probably borrow it. 

As we march further into this trial in our lives, we have so much standing us up: our convictions, our beliefs about those things that are true and cannot be taken from us by this disease, our hope. We have three treasured children beginning their lives and hundreds of friends on this journey with us. It is not the path we would have chosen, but it is filled with riches for us to mine if we can look with greater discernment. And we do. Each day. These are our words, not mine alone. 

One of Deb’s great joys is music, singing at Colgate and enjoying times sharing and singing sacred music with her parents who were both committed choristers throughout their lives. Her musical palette is wide-ranging, from John Rutter to Faith Hill to Willie Nelson. The common theme is vulnerable and meaningful lyrics. Every so often, a danceable song comes over the stereo as we are clearing the dishes from dinner, and we take to our kitchen “dance floor”, Deb occasionally standing back to lip-synch the words of the song. It is a language that we share in the present that increasingly transcends words and evokes the journey of our lives together and the love to come in the days ahead.