What should I say?

We just completed a wonderful Thanksgiving Weekend with members of our family and dear friends before the first Winter storm rolled into Boston, reminding us that the unremitting weather of New England never stays away for long.

One of the things that we learned over the past few days is that we now have subtitles under our names: Deb is exhibiting changes in speech and sometimes struggles to complete comments in conversations, Stu is unusually praised for his caregiving efforts or taken aside for the "How are things?" conversations on changes in our home. Our friends are probably thinking: "Can we say something, should we remark or pretend that this elephant that moved into our friends' family is somehow not really there and can simply be avoided?"

I am here to tell you that "No, the elephant should not be avoided nor should we spend all of our time in a sense of mourning about its presence."

We are new to this, too. We know that too much time thinking about what is changing can make us sad, and it strips us of the joy of getting together. And that is why we want to see, hug, and communicate with our family and friends right now.

Some of the common things you might be wondering might include: is Deb experiencing more pain with ALS (thankfully, no), is it hard for Deb to talk (no, but it is more tiring and the speech cannot keep up with her ever-sharp mind), should we give you guys space (please, no, but understand that we might be social lightweights on most evenings), are you sad (I think the operative word is "reflective")?

We inhabit space in-between now: we know what is coming, we do not fully know how or when it will arrive and change things, but from early indications her doctor has said that things are progressing slowly. We know that we cannot return to our life before September. In this new reality, we crave social contact; but we know that our capacity to engage will be a bit muted. In spite of that, we want our friends and loved ones to try and "keep up" as we lurch into a new mode of interaction. Please let us know what YOU are going through (we don't own the franchise on human suffering; all of us have things in our lives that are weighing on us), please ask questions and do not self-edit, and please find a communication channel that feels most comfortable. Notes are great. Dropping by for short visits is something Deb cherishes. In fact, I will tell you that a thirty-second hug without words can mean as much as anything right now. Phone calls are tougher and need to be brief. We are looking forward to Abbey and Ted's wedding in July and delight in the activities and time with our wonderful children who are each and all stepping up in amazing ways. The wreaths are up; the tree will come next.

On the list of caveats or wishes: please come visit with a searching heart, try not to share "insider information" on a new pharmacological breakthrough or herbal treatment for ALS (we are working with one of the foremost ALS centers globally), please know that ALS presents as a wide range of symptoms (in varying sequences) that continue to confound the best research physicians, don't try to say (or dance around the fact) that everything will be okay (that is always unknowable and not the point of life or what we are experiencing), and please do not send us articles about people with ALS (24/7 is enough coverage for our family right now). One of the reasons we have provided so much information on this site is to save our friends from needing to do so and let the contact remain centered here where we pray it can be most supportive for all of us.

We contacted the widest swath of friends with this outreach this week, because we want to be in communion with all of you, particular during this Advent season. We want to feel your presence and reintegrate the meaning of our friendship during this time. If you cannot be here with us, we will gratefully accept any contact. If you do schedule time on our calendar, try the thirty-second hug (with or without words), ask us anything, and be the person we love.