Journey's End or Beginning?

“There is no despair so absolute as that which comes from the first moments of our first great sorrow, when we have not yet known what it is to have suffered and be healed, to have despaired and to have recovered hope.”

—George Eliot

On March 13, we let go of the tender hand of our beloved; and on April 2, we gathered in Lexington, MA to remember Deb and come together in our grief and to express our gratitude for her life. On May 14, we will say our final, earthly goodbye, as Deb will be laid to rest in the plot we will one day share at Pine Grove Cemetery in Falmouth, Maine where her remains will await those of mine, shaded by a canopy of trees at the crest of a gentle rise. It still seems surreal and disorienting.

In 2019, we created this website as a place to gather, share information, and provide updates on Deb’s journey in her last three years with us. We tried to bring you into our lives, but we also wanted to be mindful that too much exposure could be awkward, maybe difficult, and even off-putting. I have also been aware that I am writing most of these updates and became associated with the message, but this was always meant to be a story about Deb, first. I know that the kind words about my care for Deb are well-meaning, but they are hard to hear and astray from where my emotions run now, missing her and thinking about the intense time we shared, not seeking accolades for loving her through the struggle. The house feels very empty. Sadly the time of Deb’s witness and trial is over, and we need to begin to lift our eyes to the horizon. This is what Deb wanted, and this is the way in which we will best honor her life.

The loss of someone we love is an event that shakes us deeply, reminding us of the uncomfortable certainty of earthly death and separation; and it can haunt our days as we live under its threat for our own lives. This loss, for me, is far worse than what I experienced before when my parents, brother, and friends passed away. More painful and haunting, evoking the emotion"fear", as C.S. Lewis aptly described in his book "A Grief Observed", written about the loss of his own wife. And we also feel the deep sadness of knowing that we will only see our loved and departed one in our memories for now. The initial weeks have been hard, but we are putting one foot in front of the other; and we are determined to see Deb’s legacy fill us with joy and hope. We are looking into the future with a sense of purpose and conviction as we look toward the warmth of Summer.

Before we end this chapter, I want to write a message to all of you who have walked with us, prayed with and for us, and encouraged us during this long and difficult period. We never intended for our family’s trial to usurp and overshadow the challenges you are all facing, so we need to recognize that it is time to move into a period of rediscovering meaning that will be shaped by Deb’s example over her lifetime. For the last three years, our challenges and concerns have taken primacy in our conversations with all of you, and that is something that we need to turn into “a creative force” in the words of Martin Luther King, Jr. For that, I want to tell you some of the things that I hope will emerge from our intentional effort. I also want to say that we would love for you to join us, as you determine is appropriate, in the months and years ahead.

First, we have been raising a charitable fund, confirming pledges and commitments, that will continue to honor Deb called the “Debra M. Williams ALS Fund”. Set up on a donor-advised fund platform, and intended to be led by our children, we received permission from the fund administrator to accept a relatively small number of gifts to establish this fund. Our family and several friends have begun assembling this fund, and I would be delighted to speak privately with anyone about this project to steward contributions to the areas of care support and research across the field of ALS. In addition, we will continue to ask for memorial gifts in Deb’s memory to go to the Compassionate Care ALS organization in Falmouth, MA that we introduced at her memorial service, so hopefully one of these two channels for charitable engagement might fit into your plans. https://ccals.org/donate/ ALS is nowhere near the fundraising juggernaut of cancer-related organizations, or many others, so our efforts mean a lot. We are particularly intrigued with the emergence of genomic research to help identify and treat ALS with more effective therapies by lengthening the window of study from its present handful of years.

Second, we are seeking to establish ongoing fundraising and awareness initiatives to advance the work on ALS through multiple channels, and we really need a lot of help here and not necessarily just of a financial nature. These are ways to put our talents and time to good effect in addition to our treasure. Some of the thoughts we have are:

1. Establishing either several golfers’ foursomes or a full tournament to raise funds each year to support Deb’s legacy and support work toward caregiving and research in ALS therapies. I believe this is fully achievable and a great way for members of our wider community to continue to help us in this broad effort. Please contact me through email at williams.stuartc@gmail.com if you have an interest or any thoughts in this area.

2. Forming a cycling peloton that can ride together in ALS events and form social bonds in this pursuit of greater awareness toward ALS. This is a means to ride and to “do good” for the ALS community, and I am hoping that “Deb’s Peloton” becomes an actual team that can work together in an ongoing way by seeking out cycling events with a dedicated or discretionary fundraising format to honor Deb’s memory. The Tri-State Trek is one example: https://tst.als.net

3. I plan to remain engaged in ongoing advocacy wherever I can be effective and am needed. I enjoy writing and speaking about issues of interest, so I plan to make ALS advocacy something that will occupy my years ahead as I gradually reduce my time in professional commitments and move in the direction of keeping Deb’s memory and ALS present in the minds of those who need to hear this message. In the immediate term, I am speaking to IAMALS to see if I would be a helpful "mentor" to other caregivers. We will see how the training goes.

At a micro, bottom-up level, our family will continue to honor our lost love by seeking out ways to stand up and advocate for those who are on this journey. We know how challenging, yet still redemptive, the ALS struggle can be; and we want to do whatever we can to heal ourselves and those whom we may never know by becoming more strongly involved in this community.

If you have an interest in receiving a copy of the memorial service, I can transfer it to interested parties for a short time once it comes off YouTube. Because of its recorded music, it will not be staying on the Hancock UCC - Lexington site for too long. We have also posted Deb’s obituary on the Dignity website, and it will be available there pretty much indefinitely. If you would like to leave a comment there as a remembrance, please do. Here is the link:

https://www.dignitymemorial.com/obituaries/yarmouth-me/debra-williams-10627718

Okay, you have reached the end of this post. PLEASE consider it a call to action and consider one of the ways in which you can become personally engaged with solutions for ALS. This blog is no longer just about us, our family, except as a remembrance and moving forward. Write to me. Call me. Tell me how and on what terms you can become involved. Those things we commit to NOW will make all the difference and hopefully ensure that we remain laboring in the memory of this struggle that we all hope to redeem for others. We want to heal by “paying it forward”. Each year, thousands of people and their families will be in the gauntlet we know so well; and I cannot adequately describe how much it means when genuine gestures of help come forward. I am ending this communication channel, so this is my final appeal.

Please do not consider this a farewell strong-arm to join in the struggle we have endured. We feel compelled to move forward to the next chapter, and we know that our time, talent, and treasure are most of what we have to offer. I will be signing off and moving my personal writing to a format that does not compromise the focus on Deb’s journey. We have treasured the support you provided to us during this time.

We love you all and are so grateful for the support you provided to us. Be well.