Celebrations
We open a glass door that reads: The Brewtorium Brewery & Kitchen. The morning sun shines into the large room and falls on a tall round table where Tracey and I grab a Sharpie to make nametags. Spotting my colleague Noël a few feet away, I gesture for her to join Tracey and me. Together, we slide into the quickly forming sea of souls that have gathered there, each of us intending to honor a special friend and to celebrate his life.
I swallow the lump in my throat.
Losses
Dubbed A Celebration of Life, my friend Greg and his family decided to throw this party last spring, not long after Greg was diagnosed with ALS. Also known as Lou Gehrig’s disease or Amyotrophic Lateral Sclerosis, ALS is a progressive, cruel, and fatal neurodegenerative disorder.
A consummate extrovert, Greg walks around the Brewtorium greeting his many friends. So does his devoted wife, Lanette, and their adult children, Danny and Caylea, along with other family members–all of them acquainted with profound pain. Greg and Lanette’s son, Ian, died in a car accident in 2013 when he was a student at Texas A&M University.
I never met Ian, but I feel as if I know him. He played bass guitar and, like Greg, lived and breathed music. My feeling of knowing Ian mainly stems from Greg and Lanette speaking about him often and keeping his memory ever-present. I love that they have Texas license plates that read “Ian’s Mom” and “Ian’s Dad” and that they have tattoos that honor him as their son.
Friendship
Greg and I met through our mutual friend and colleague, Art Markman. Art is among the smartest people I know, and the same can be said for Greg. Given our shared affinity for music and a mutual disdain for neurological woes, Art thought Greg and I should be friends.
He was right!
Greg and I play and write music together. Our shared values, passions, commitments, and vulnerability drew us to one another, but music is the glue that holds us tightly together as we seek to orchestrate the kind of life experiences that endure in memory.
Reflections
After half an hour of mingling throughout the Brewtorium and eating Tex-Mex food, which I believe is a foretaste of the heavenly banquet, people begin sharing stories and words of appreciation and love for Greg, Lanette, and their family.
Knowing Greg as I do, the themes are predictable: kindness, generosity, humor, brilliance, hospitality, and authenticity; faith, hope, love, joy, and perhaps my favorite, Greg’s penchant for being a “goofball.”
One man, Matt, shares that he met Greg years ago when working as a barista at Starbucks. Matt speaks about being in crisis and facing enormous personal challenges, including being homeless, and reveals that Greg and Lanette offered him Ian’s bedroom. Matt became a part of their family and lived with them for three years. During this time, he got his life back on track.
Others speak of Greg as a “second father” to them, a “best friend,” and of his decency and limitless offers of kindness, grace, joy, and hope.
Permanence
ALS has taken Greg’s ability to speak, but he still has a lot to say. He uses his phone, which, through modern technology, captured Greg’s voice before he lost it, and which now—after he types what he wants to say—allows him to sound like he always did—to speak in his own voice.
Greg begins by telling us he wanted to have this celebration because he gets to hear the nice things people say about him and because he can talk more than anyone else! “You don’t get that with a funeral,” he says.
Greg waxes eloquent on the gifts of life, of each and every day, and of the value in knowing our time on earth is limited. He speaks of the love he has for his family, friends, colleagues, and neighbors. He shares the importance of his faith, including his struggles with doubt, and he notes that “ordinary experiences become holy when they are filled with love.”
He says, “Ian, I will see you soon,” and he and Lanette embrace for a slow dance to a song she’d chosen, “Feels Like Home,” by Chantal Kreviazuk.
The Holy
When Tracey and I get home, I plug into the Vox bass amp that Greg has loaned me—it replaced one he and Lanette gifted in Ian’s memory—and I play and reflect on the morning. I have sought answers to the big life questions for as long as I can recall. I have found answers to many of them, at least provisionally, but one that remains in play is this: How can one person or family have to carry so much pain and loss?
What I know is that Greg and Lanette demonstrate that some experiences of pain cannot be overcome, but only shared; and occasions of sharing can bring unanticipated breaks in the pain. It’s like when we take a quick, deep breath after emerging from being under water. Taking these breaths, which can happen when spending time in the presence of those we love, and who love us, can open us to giving and receiving a depth of love never imagined. This love makes life sacred, even holy, and this love frames experiences of enduring joy, meaning, purpose, and hope.
I have experienced the holy with Greg when we write music. He lays down the chord progressions on the guitar. I provide the lyrics. Here are the lyrics for a new song that we will finish soon. I wrote them for Greg.
“One Plus One.”
No need for alarms
Sleep’s hardly a thought
Time is short
Can never be bought
If I’m using the day
It’s not using me
If I’m singing new songs,
I’m where I need to be
A bright morning sun
Brings new joy
Drinking life in
Never meant more
Now I know
What’s at stake each day
Each moment
As we make our way
Time marches on
It always will
What happens in time
Can harm or heal
Memories build
If we allow them to
One plus one
Can be more than two
The path has curves
Roadblocks too
Hearts get ripped
From our bodies—true
When love remains
We find a balm
It soothes the pain
Carries us on
Our friends heal us,
Through laughter and tears
Give life meaning
Help us live again
When harder days come
I will lean on you
Lean on me, too
As friends do
Life renews when someone
Touches us deep within
We cannot outlast time
But we can live, grow, and sing.
______________
Allan Cole is Dean of the School of Social Work at The University of Texas at Austin, where he also serves as the Bert Kruger Smith Centennial Professor in Social Work and as Deputy for Medical Humanities and Technology and Professor of Psychiatry and Behavioral Sciences at the Dell Medical School.
Diagnosed with Parkinson’s in 2016 at the age of 48, he is the author or editor of 15 books on a range of topics related to chronic illness, bereavement, anxiety, and spirituality. His latest books are Jumping to the Skies: Additional Lessons from Parkinson’s Disease (Cascade, 2023) and Riding the Wave: Poems (Resource Publications). Other recent books include Discerning the Way: Lessons from Parkinson’s Disease (Cascade), In the Care of Plenty: Poems (Resource Publications), and Counseling Persons with Parkinson’s Disease (Oxford University Press). With filmmaker and his creative partner Vanessa Reiser, his documentary “The Only Day We Have” aired in April of 2024 on PBS. You may watch it here.