What are we doing these days?

Deb with (some of) her nieces at a get-together for Abbey held in Maine last month.

We value the community of all of you who are out there, knowing that we are surrounded by friends as we continue on this journey that is strange and foreign to us. Having heard from a few of you over the past weeks, seeking to know what has been going on, I thought I should put pen to paper and write a short update.

The Christmas magic soon marched into January with the attendant Winter cold, leavened by the presence of our kids and time with friends and family. Deb and I are awaiting news on a drug trial for which she has been screened over the past several weeks. The December press release on Amylyx, a promising treatment started by roommates at Brown University, captured everyone’s imagination, but we are focused on more immediate-term treatments. Driving home from Vermont yesterday, Deb navigated Cigna’s website and help desk to confirm that Radicava, a FDA-approved drug that is administered akin to chemotherapy, will likely be covered as a medical procedure if we follow “pre-cert” protocol with our care team. While that stuff can make us bristle at the health care system, Radicava is exceedingly expensive to deliver in its current form, and we now understand a bit more about how these drugs proceed through funding, research, clinical trial, and delivery. We, as a society, all have much to learn as we see the political brick-bats thrown about regarding health care but also the notable sacrifices and financial risks and commitment that research physicians and scientists put into drug discovery. It is a significant silver lining for which we are too often unaware in the West, especially here.

With Abbey and Anne both here under the roof last weekend (Paul was recovering from strep), I began to experience a transition I had not anticipated and, in fact, felt I was already through: the emotional knowledge that I have been (up to now) feeling sorry for myself, mistaking my emotions for true empathy. The first signs were back in the Fall, receiving emotional comfort from Deb. (What the hell...?) I know and see that others in our immediate constellation have moved through this door. So, what exactly am I trying to say?

Abbey preparing lentil soup, a new staple, with her Steely Dan t-shirt from their 2019 tour.

Anne's frozen lemon souffle and, okay, that pullover has lived half-way around the world.

Time with Mom as the July nuptials for Abbey and Ted fast approach.

Each morning I rise around 5:00 and plod down to the kitchen where I start a fire, give a nod to Millie who clearly does not suffer my type of insomnia, and settle in to a pot of coffee. I tried reading the Psalms, after the urging of one of our pastors, but I wasn’t finding the desire to rage at God to be my primary challenge. I have, instead, turned my mornings over to Dwell, an iPhone application that provides “read” scripture in a variety of translations and voices, and reading the daily missives of Richard Rohr, a Franciscan who has an active ministry based in Santa Fe. Deb and I love Rohr, and his daily meditations, and we are grateful for the Earth angel who brought him to us. With all this soul preparation, It was easy to mistake my “good intentions” for good works.

Last weekend I felt the first jab that I am sitting in the middle of a different reality with the girls home. I saw, with full clarity, my need to look around. Getting into the Word each morning and trying to prepare for the day ahead was insufficient unless I could see its impact in everyone else’s lives here. It was spending time with our kids last week and Deb’s father yesterday that it hit me like an electric current, followed by talking with Deb on our drive home from Vermont, that I saw everyone else more clearly for the first time. Deb is starting to deal with the loss of her verbal fluidity, even as her considerable mind hums at full speed; and it is especially pronounced when taxed early in the day from using too many words or trying to speak at volumes necessary to cut through ambient noise (like a restaurant or on a long phone call). She has a personal microphone “PA system” to assist with voice amplification, and we are getting the hang of it along with its occasional screeching feedback. But it is an unfortunate source of self-consciousness that falls hardest on Deb that we all need to support if we are to be helpful. Those who bear up with ALS, or have walked with a loved one on this road, know that Deb does not need cheerleaders. She needs love and understanding. And laser-focused compassion without awkwardness. Think about how any of us would feel if the world became suddenly patronizing and overly-solicitous in all things except our patience. I can almost feel the sense of "I am here!" pouring from Deb's heart. Being a brilliant intellectual, and I believe Deb has richly earned those bona fides based on her life's record, takes a direct hit when you lose the ability to speak freely and at full speed with your mind. I have been calmly trying to “interpret” when I can, knowing this beautiful creature for 35 years and believing I can read Deb’s thoughts. But that assistive impulse travels a fraught edge: what starts as being helpful started to morph into impatience this month: “I already know what you intend to say”; or, at my worst, the emotional sense of “Say it already”. I have had too many of those moments in the last few weeks, and we are in the very early innings right now. I need to be an advocate, first, and that might mean saying things with a bluntness to many of you that is uncharacteristic (I hope) when I see impatience well up in others as it has in me on occasion. And, second, I need to remember who is the principal in this process. If I, or anyone, is unable to step up; we need to fix that and be active learners.

As I said earlier in the post, I am no longer reading the Psalms, because I don’t believe I feel anger with God. But I do need to begin each day and act with peace and charity. It will start with prayers to change my heart from the frenetic pace my life often takes. And it will continue through an accounting of when, given the opportunity to be helpful, I fall short by not putting a full focus on Deb, her condition, and her immediate needs.

We are anticipating news on this trial shortly, on Radicava if the trial does not work out this round, and on our upcoming travel to Anguilla (in February) and London/Paris (in March). I want to end this note by expressing my gratitude and the influence of a wise and dear friend who has traveled this road so unfamiliar to me. He said that we will learn a new depth of communication in time, and we will see our communication grow in powerful ways as we are confronted with what start as limitations and blossom into new gifts. As most of his wisdom shared with me, I am so grateful to hold that close and seek greater understanding. And strive to be better. I guess I am writing to encourage us all to be mindful of how hard this particular transition is and not for us but for Deb. Each day I want to empty myself of "my view of what is needed" and look clearly at what Deb does need, if not through explicit coaching than from watching with greater focus and understanding.

We love you all, and the notes you send, both publicly and in private directly shared with Deb, are like rocket fuel. Please keep them coming, and keep us in your prayers, as well. I write these posts to remain "of mind", but I see the real magic in the touch and words brought directly to Deb by those who love her.