When I was in college I spent a lot to time doing the following: Partying, being hungover, and helping my grandma. I know, I know, one of these things is not like the others, but that was me. I partied hard, like real hard, like probably too hard. And I could often be found at my grandma’s house helping her with this, that, and the other. Whenever my grandma would call me to invite me over I usually wouldn’t answer. Loved that woman to death, but it’d hard to answer the “Sweetie, what are you doing today?” with the truth of “Sex, Drugs, and Rock and Roll, Gram,” so more often than not, I’d push her calls to voicemail.
When she left me a voicemail she would always say, “Hello Betsy, it’s Grandmother Burnett,” which was peculiar for two reasons. One was that she was my only living grandma and so the formality seemed like over-kill. The other was that I only, ever, called her Gram.
You see, she was mine and I was hers. I was her only granddaughter, among 4 older grandsons and I’d like to think I was her favorite. I don’t know that for certain…and actually given how much she did things with perfect equality, I am actually sure she would never have fessed up to a favorite. I remember one time my brother’s birthday gift cost her more than my birthday gift and so she gave me an extra $27 to make sure it was equal. Equality aside, there was something between her and I, perhaps only the connection of both being female, I’m not sure. I am sure that I loved her deeply and she loved me the same.
During college, as aforementioned, in moments of lucidity, I would go to Gram’s and help out and run errands. Often I would run to the grocery store for her. The list was always the same: “Milk, some produce items, and a Tylenol Cold and Sinus.” For months, each time the list had a box of the Tylenol. I’d look at the list and remark that it was odd that she needed yet another box of the medicine, but I didn’t think to much more of it. She came up during the Great Depression in the Dust Bowl of Kansas and modern medicine was always the bee’s knee’s for her. She was kind of a hoarder, what was it to me if she had a closet full of boxes of Tylenol.
Unfortunately, the chronic sinus pain, headache, and dull weight in her chest began to spread to other parts of her body. And despite her best mid-west, daughter of a Kansas wheat farmer, no complaining, no emotions, attempt, she couldn’t avoid the inevitable. You see, my grandma didn’t have a chronic cold, she was slowly dying of A.L.S., Lou Gehrig’s Disease.
I don’t recall the details clearly, how and when it went from “Gram’s sick” to “Gram’s dying”. All of it was mired with grief, but also disfunction. My aunt and my dad had never gotten along, and the slow death of their mother only exacerbated the chasm in their relationship. My aunt became hyper-controlling and possessive of every moment of my grandma’s life. She was grieving deeply and as can happen in grief, a lot was coming out sideways. She moved in to my grandparents house and became the gate keeper of my grandma’s time.
The voicemails came more frequently. Slow, slurred speech as her vocal cords loss their tone, always commenced with, “Hello Betsy, it’s Grandmother Burnett.” She would request I come over and do a meaningless tasks like fold her napkins, or water the plants, all things I knew were being completed by my aunt, and the slew of home health care nurses. I’d be hungover, laying on a couch with friends, but I would always go. It was a period of time where I was making a lot of whacky choices, but my priority for my Gram was always clear. I knew. I knew that even though she would never say it, she wanted me to be around.
Gram’s health declined rapidly. And as she declined, the more tension surrounded her. More doctors, more specialists, more nurses. More disagreement around how to handle her end of life care- which at that time was seen as “care” by my aunt who was in deep, painful denial, versus the reality that it was terminal. When you plan your end of life care you imagine your wishes being granted per how you write them out, I suppose you don’t consider that your loved ones may be fighting over if now is the time where care is “supportive en route to recovery” vs. “final en route to death.”
Little was know about A.L.S. in 2005, little is still known about it. The little that was known to us, that A.L.S was a neurodegenerative disease that was always fatal, was clear to everyone. But as is the case with grief, everyone processed it differently. And how that finality applied to end of life care was murky. For a family that had never spoken much about their emotions, the enormous grief of this agonizing march to death was too much. It was a complicated and dark time.
On her last Mother’s Day I gifted Gram with a journal. It was a blank journal that I had filled-in with questions for her. Nowadays you can buy this kind of “tell your story” journal, but back then I created one myself. Simple things, “What is your favorite flower.” and more complex questions, “When did you know that you were in love with grandpa?” Knowing her health was failing, somewhat aware of the limited time we had left, I was eager for her to write down her story. To capture in words what it was to be Francis Damaris.
As is the case with A.L.S., the lost motor function happened quickly. Each time I visited she would be less and less mobile, eventually fully without motion from the neck down. She always kept the journal I’d given her next to her bed. Often times, I would casually thumb through it, disappointment that it remained empty. With hindsight, it’s clear that the disease would never allow her to record in the journal, but at the time I was frustrated. Why couldn’t she just fill out a couple questions each day? My own grief that time was coming to and end and I didn’t know enough about her.
My grandma died a long and painful death from a disease for which is known for it’s terrible suffering. It was a very hard thing to watch, and impossible to make sense of. My grief was deep and pervasive. Many years after her death, I actually got up the gumption to attend a Grief Workshop at our church. While many of the people there grieved their spouse or children, I grieve my Gram. I felt a bit embarrassed, after all, aren’t all grandparents meant to die? But I knew that the hurt in my heart was out of proportion to the norm of a grandparents death.
I missed her. I still miss her, deeply, 15 years later.
I think often of what it would be like to hear “Hello Betsy, it’s Grandmother Burnett…” and curse myself for not saving at least one of her voicemails. This lesson was learned and will explain why if you ever call me, it’s a 50/50 that my mailbox is full. I have a voicemail saved from all the important voices in my life.
When Beaudin was diagnosed we had the support of a lovely school community. His first grade class was so supportive during that early time. They brought us meals, donated money, made Beau signs and cards, welcomed him back with open arms when he was able to attend school. One night laying in bed I saw a GoFundMe donation come through. It was large. Larger than most donations. When I clicked in to the app I saw that it was from Vic and Mo Gulas. Vic and Mo were the grandparents to Beau’s classmate Sophia. Because of Sophia’s mom’s work schedule, Vic and Mo were often seen at school doing the drop-off and pick-up. More than that, Mo could also be found helping in the classroom. They were a sweet couple and sure, Sophia was a classmate, but their donation was out of proportion. Many of our close friends had given $50 or $100 and this was far more than that. I know better than to think that the amount of a donation is proportionate to the care, but to receive such a large gift from someone we weren’t that close to floored me. We felt so dearly supported by the idea that someone on the periphery would give to us with such generosity.
Shortly after Beaudin returned to school, I saw Vic picking-up Sophia one day from school. Previously an active, fit man, I couldn’t help but wonder why he was walking with the heavy assistance of a cane. A couple of months later I saw his daughter, Alex, post about an A.L.S. fundraiser on Facebook.
Vic had been diagnosed with A.L.S.
I reached out to his daughter, Alex, and shared some choice four letter words which seem to be the only thing that comes to me in moments of deep grief. We agreed the A.L.S. was, in fact, the worst. I worried for her, knowing how terrible the long and slow death would be.
Over the following year, I followed closely along with Vic’s CaringBridge. I felt a connection to his story, to his family. They had been so kind to us, and we were both experiencing such tragedy. We would comment on each others pages with a shared understanding. Vic wrote openly and honestly about what it meant to be diagnosed with A.L.S. and what life looked like as his numbered days began to pass him by. I would read the posts as soon as I saw the notification and eagerly comment on each entry. He would write about faith, about his love for his wife, his daughter, his Sophia. He would write about what it meant to die a long, slow death with the relentless belief in a good and mighty God.
One day, shortly after Beau’s relapse I got an unexpected email from Vic asking if he could share of Beau’s situation on his Caring Bridge, to request prayers from his readers. It was so tender to receive this email from him and, of course, I said yes. I was surprised that he still read my blog and staying connected to Beaudin’s story.
For both he and I, I suppose, the days and months of this year have slowly eeked by. I have read as his entires have become more and more poignant about the mortal nature of our bodies, and the eternal nature of our God. I have read along as he has detailed his body coming closer and closer to finality, and his faith coming closer and closer to fruition. At one point in his writing he made clear that his CaringBridge was for his daughter Alex, and for Sophia. So that they may know all the parts of him that he had yet to share. That they may have a written record of not only who he was, but who God was to him.
In April, I received an email from Grubhub for $250, “Love, Vic and Mo Gulas.”
I laid in bed the night I got the Grubhub email and cried. I wept over the goodness of Vic and Mo, over how they had been giving to us for over 2 years even though Beau and Sophia hadn’t been classmates since 2019. I wept over what utter and insane injustice A.L.S is and what utter and insane injustice pediatric cancer is. But mainly I wept over how tender I felt that Vic was offering Alex exactly what I had desperately wanted from my Gram. A written record of his faith, his God, his life.
One morning last month, after we had arrived home from Philly, I was telling Josh about the GrubHub from Vic and Mo. I was telling him about the connection I felt through the whole A.L.S. thing, and just how generally grateful I was that they were so kind to us. I told Josh that I needed to take some time to write Vic an email, knowing his time was drawing near, to let him know how important his writing to Alex and Sophia had been to me.
Later that day I got the notification for a CaringBridge entry from Vic, entitled, “Final Post.” Ok, things are coming to and end, I have got to get this email out pronto, I thought to myself. I opened the app and clicked on the journal entry:
“If you are reading this now, I am with Jesus.”
Not knowing what to say, but knowing that I didn’t want to say nothing, I reached out to Alex and again offered her some choice four letter words. I again wished that four letter words were not the only thing that comes to me in deep grief. Despite myself, she received my vain attempts at condolences with grace. She thanked me for my message and then said, “My dad thought of you and Beau so often and Sophia and I still pray for you all the time. I think your writing really inspired him to write more on Caring Bridge, and for that, I am forever grateful.”
I stood in the shower that night and cried fierce hot tears over why we all have to die. Why life is so damn hard. I thought of my Gram and the way she’d painfully stroke my hand when I sat next to her, using all of her will-power to touch me. I thought of Beau’s 1st grade class and how sweetly they walked us down the early cancer road. I cried that I hadn’t gotten around to writing Vic the email and cried that he was now in Kingdom come and knew all things in light of eternity.
In the end, I haven’t a clue what Vic’s full motivations were to write out the details of his life. But if my writing offered even the faintest encouragement for him, well, I can think of no greater honor. You see, I don’t know how it all works. I don’t know why suffering causes some people open up and grow in their faith while it causes other people shut-down and drown in disbelief. I don’t know my Gram wasn’t able to offer me a story, while Vic was intentional about offering his.
But what I do know, the little that I can make out of the hard road that is this life, is that it’s better lived out loud with words written on the page, and spoken to the ones we care for. It is offering our full selves to this world in sickness, and in health. It is speaking love to those we love. It is being open and honest about our faith. It is about knowing our days are numbered, and holding nothing back.
Vic, I am better for having known you. Thank you for unknowingly healing up a little part inside of me with your writing.
If you would like to know more about the powerful like of Vic Gulas there are a couple ways to do so:
And if you would like to make a donation in his memory, in the memory of my Gram, or just make a donation because A.L.S. is a bunch of bullshit, please do so here.