Welcome to our Blog

On September 6, after spending three carefree days in my hometown and our adopted ground-zero burg of Portland, Maine, eating and laughing through each day with friends from Lexington, we returned to Boston and reality. However, unwittingly, we were moving into a new reality: one for which we had not asked and one for which we needed to prepare “crash course” style: Deb was given the diagnosis of ALS on a Friday afternoon we expected to be a comforting neurology check-in, perhaps resulting in tweaks to pain medications. If ALS is not a familiar term, there is more scientific material curated by Anne here in our site; but, in short, it is an incurable disease that impacts a small number in a profound way. It affects about 3 in 100,000 people in the general population.

During those first weeks of September, having just returned from Mount Holyoke College where Anne is in her first year, and with Abbey in the process of moving into a new position in her Chicago firm where she is living apart from her fiance, Ted, for a year; we sat down with close friends and consulted a handful of confidants about what we were now tackling and the demands it would place on us physically and emotionally. (At the time, Paul was also moving into a new role at his company; but something about his living nearby in Cambridge seemed less ominous in sharing this news.) We decided that we needed to tell our children about this during a single week, face to face, so that not one of them had to bear this information in confidence for more than a day or two from their siblings or alone without Deb or me present. We decided that week would be October 6 after walking through work travel logistics, academic schedules, key talking points, and the knowledge that we needed to soon talk with our own siblings and Deb’s father.

The blog will be our witness to the days, months, and years ahead as we confront ALS, Deb’s treatment, the impact it has on our lives and the ways in which we lead them. When Debbie received her diagnosis of breast cancer in May of 2008, we became statisticians in survival rates. In Deb’s case, we liked our chances; and we knew that each year that passed nudged those rates higher. When we passed the 10-year mark, despite chronic pain from years of the effects of chemotherapy, we were now confident. This diagnosis of ALS, coming a year following cancer’s ten-year mark, has different math. We must look at two values. First, how many years can we pray and hope for in a battle for which there is no known cure? Second, how much value can we pour into each day, week, month, and year as we look into this future of certain outcome and uncertain timing? On the first, we can only confront this ruthless disease; and, on the second, we intend to live very intentionally. Please join us.

That is why we built this site. It is a family effort, and you will hear from each of us over time. It will be unsparing in its honesty, so we do not plan to generally share its contents outside our group of friends and approved community members. It will be a periodic chronicler of those things we hold most dear: the skills of our medical team and researchers, the love we share in our family for each other and the strength we take from those bonds, and the faith that Debbie and I have counted as the foundation to everything that has happened in our lives and in our marriage since we were introduced through a blind date in Manhattan 35 years ago.

Nobody asks for some of the trials like we have been given, but we also have incredible gratitude for all that we have; we have a clarity about the gift of life that we discovered in our children, reaffirmed in 2008, and that will be refined further in the years ahead: we have lived charmed lives, lives we believe have been richly blessed. As Deb puts it in her brutal and unsparing way: "We have had a good run together." We have three wonderful children of character, we share a deep and honest love for each other, we enjoy friendships with a wide variety of friends from our many stops along this journey, and we appreciate how fortunate we have been regardless of how we might have designed our story with different plot-lines.

Please check in through this blog. But, most importantly, stay in contact with Deb. We are providing a way to comment directly on these posts; and we understand if you may already have your fill of news and responsibilities in your own lives. If your response is more inclined to a confidential note, please Deb send a message on this site. We have provided an easy form to help with that, also. I can say from ten years ago that the notes, inspirations, and prayers that came from friends and family had a huge impact on Deb’s spirits and hope and on all of us. We do not want this current trial in our lives to steal from us our dearest friends and time together as we walk into this new future.