Guest Voice: Finding that place where ‘all manner of thing shall be well’
Rebuilding my life involves honoring my wife’s memory through volunteer work
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I lost Mary Ann, my wife of 34 years, to ALS more than seven years ago. The last eight of those years with her were a medical odyssey.
After developing neurologic symptoms in 2011, Mary Ann was diagnosed with Parkinson’s disease in February 2012. When other distinct symptoms appeared, and after weeks of examinations and testing, she was diagnosed with ALS on July 31, 2015, irrevocably changing the trajectory of our lives.
This is a synopsis of my story — the moments and interactions that shaped who I became after losing Mary Ann on New Year’s Day 2019 — and how I rebuilt my life.
After her diagnosis, we devoured information about ALS. Knowing what was ahead, a friend connected me with someone who lost her spouse to ALS. She was a woman of faith and told me her mantra was a quote from medieval mystic Julian of Norwich: “All shall be well, and all shall be well, and all manner of thing shall be well.”
But things were not well. Instead of a well-planned retirement from practicing law, which would normally include transitioning clients and coordinating with colleagues, I rushed the process to take over Mary Ann’s care, both as a direct caregiver and a care manager. Caregiving became a defining life journey for me, one that asked more of me than I ever expected.
Caring for Mary Ann brought us closer together, but I was ill-equipped for my new role. Being a workaholic lawyer was stressful, but caregiving was much more so. There was no road map, only the choice to be there and fight every day. I lived in a perpetual state of anxiety, and we were socially isolated.
Finding the way back to where ‘all manner of thing shall be well’
At my lowest point, on a day when another caregiver called out and the needs of my dying wife were all-consuming, I asked God when I would be granted my deliverance, a question posed out of frustration and about which I feel guilty to this day.
Even before Mary Ann died, I wondered who I would become. There is something about illness that gives the human heart space for reflection about what matters most, and faith is often experienced in its purest form when we are in the midst of transformational suffering.
After months of operating in a fog of grief and being unable to focus, something in me gradually broke open. The ALS experience allowed me to see that things I used to give priority to are not important. My faith, instead of my work, became a priority and gave me a framework to figure out the next steps in my life journey.
This realization helped me rebuild my life and reinvent myself as a “serial volunteer” who gets satisfaction out of living a life of service to others. Using my professional skills, I volunteer with a pro bono legal organization. I served six years on the board of that organization and am connected through board service with two other nonprofits, supporting their pro bono work.
My big break came in late 2020, when I met a volunteer with I Am ALS. I joined as a volunteer myself in January 2021, running toward the disease instead of away from it. Five years later, I am the co-chair of two community teams and a member of the board of directors.
This work has allowed me to drive change as part of a dynamic community dedicated to helping people affected by ALS, meet amazing people, and gain a family.
My life rebuild includes honoring Mary Ann’s memory through my volunteer work. I think about and miss her every day. I mourn the life that could have been, but I have the drive to move forward and have turned my mourning into service. Volunteer work and philanthropy are more important and fulfilling to me than anything else I have done in life, other than being a caregiver.
Now, with the passage of time and the rejuvenation of my faith, I can say with confidence that “all manner of thing shall be well.”
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