* I wrote this piece nearly in its entirety, shortly after Phill died, in February 2023. Then the events of my own life and loss of my dad made it hard to come back to. And I feared it would never be good enough. But I promised myself I’d finish it for Stacey. And I hoped for others to be able to witness Phill’s (and Stacey’s) strength. *
I’ve tried to write about death a number of times. In my blog’s draft file, there are a handful of pieces I began, but never finished. And in all honesty, I’m sure they're all really bad. The times I can remember trying to write about death, I felt manic. And my thoughts weren’t focused.
It’s not surprising. It’s hard to ponder death. It’s also scary. While covering the topic at length in my last counseling session, Dr. Nev and I discussed how for someone who skirted the edges of death as I did, it’s unnerving.
Death presents an enormous, universal burden, and losing a loved one or acquaintance is always hard. But it feels particularly heinous when someone dies young.
Unfortunately, I didn’t choose to hypothetically write about the tragic deaths of young people. I’m writing after bad news came one after another in the span of one week.
A thirty-two-year-old woman, with a toddler the same age as my AE-baby, Carlie, died after a brave battle with mental health. I met her only once, but our meeting and shared hug left an enormous impact upon me. Her death is heartbreaking.
And just days later, Phill died. Phill is my cousin Stacey’s husband. He battled cancer for eight years and left us way too soon, at the age of only thirty-eight. Their two kids are the same ages as our big kids.
I know there’s a hole in Stacey’s heart that I can’t possibly fill. And I know these words aren’t good enough. But Phill’s journey had a profound effect upon me and it’s something to proclaim.
Sean and I were introduced to Phill when we moved to Bismarck, right prior to he and Stacey getting married. I wasn’t at their wedding, but I distinctly remember my mom talking about how Stacey kept looking at him through the ceremony and how obvious it was that she was so in love with him. They were a beautiful couple.
The first time I met him was at a family party. When he told me he worked at Wells Fargo, I went off on some long story about our firm in litigation with the bank. He had a bit of a wide-eyed look but thankfully, still spoke to me. (Please follow me for more tips on how to make first impressions.) I could tell right away that he was mostly quiet, but fun to be around.
He was also a great husband, devoted father, and from what I hear (because Stebbins Mulloy’s co-ed softball team coincidentally never asked me to play) was an exceptional softball player. His wife is a beautiful nurse, his young boys athletic, handsome, and sweet. They had it all, but they also had a 10,000-pound elephant in the room with them. Phill’s cancer.
They had a devastating diagnosis, endless treatments, and constant uncertainty. And they had to stay eternally vigilant to try to keep it all. To keep them all together.
Eight years.
Eight years.
That’s a long time to wage war against a rare pancreatic cancer.
I’ll never forget when Phill was first diagnosed. Mike and I had just started our law firm and I had a five-month-old baby. It was my second child, who was just a few months younger than their second. Our oldest kids were just three.
Phill’s diagnosis rocked us all. I remember the big benefit we attended where droves of people bought items and his softball team flipped pancakes. And Sean held Phill and Stacey’s littlest guy, something he’ll always remember. He couldn’t help but fear that someday Phill wouldn’t be there with his boys. And I’ll never forget being with Phill and Stacey in my law office, right before they made their first big trip to Mayo.
It’s hard to think about your Last Will and Testament even when you’re older and healthy. And it’s downright terrifying when you’re young, have children, and have cancer. The idea that Stacey would someday need Phill’s Will was a silent burden I carried with me over the years.
Simply put, for eight years, our entire family, every grandparent, great-grandparent, aunt, uncle, cousin, niece, and nephew, feared Phill’s death. We dreaded a day where Stacey and the boys would no longer have him to hold. That Phill wouldn’t get to share in their lives the way it should be.
But we didn’t often worry aloud, because Phill’s superhuman strength told us that he wasn’t going anywhere. I can hardly envision a greater fighter and more courageous man than Phill. Years into his constant and painful treatments, endless doctors, chemo, and drugs that would change his body there and back, I never heard a negative peep from him. He didn’t complain and surely didn’t want anyone feeling sorry for him. He battled. Hard. And found a way to make people feel at ease around him. Phill’s attitude and constant valor didn’t show that he was in a daily battle. He protected us.
But deep down, we knew our unspoken fears were a reality. Yet they were nowhere near as heartbreaking and troubling as their family’s everyday worries. Because that giant elephant constantly lingered in their background, sometimes more loudly than others, for eight years.
It was from Phill and Stacey that I learned about CaringBridge pages. And a lot about empathy.
As they were blazing through their own hell, they still showed up for me when I got sick. I don’t remember a lot about people coming over and bringing meals when my brain was still freshly disorganized, but I remember Stacey. I was sitting alone on the porch, like I did so often that year, and she sat with me. And talked to me. I remember thinking then and now, how beautiful it was that she took time for us and that she wasn’t afraid of me. They continued to check in with us and always asked about my health.
And it was from these two that Sean and I learned about constant devotion through illness. Phill’s herculean strength was matched only by Stacey’s unending love.
For years, Sean and I, and many others in my family, saw Phill and Stacey as the ultimate in life’s perspective. I am not lying when I say that through some of my darkest days, someone would say Phill’s name and it ended my pity party.
I heard it out of Mom’s mouth countless times. As Dad dealt with serious and debilitating medical conditions for years.
“At least we don’t have what Phill’s dealing with.”
We’d then realize that not only could we march on, but that we would march on.
Simply invoking Phill’s name summoned perspective and courage.
When I’ve had to doctor alone and leave my children. When’s Sean’s had to stay with the kids and felt torn that he’s not with me. Each time, we’ve reassured each other that if Phill and Stacey could do it for years, we could too.
The few times I went to Mayo alone, I thought of Stacey and wondered how many times she drove the nine hours there and back by herself. When I worried I wasn’t a good wife and mother while sick and recovering, I thought about how many times she said goodbye to their children, to leave them with family, so she could be with Phill in endless treatments, clinics, and hospital stays both near and far. Or the times that she stayed with their children and couldn’t be with Phill. I can’t imagine how torn she felt. And for so long.
And I truly can’t fathom what it felt like to be Phill.
I simply can’t remember how many times either through family members or Stacey, I heard the words “Hail Mary” as it related to Phill’s treatment. They kept trying and relentlessly looked for healing. And he continued to succumb to whatever it meant for his body and mind.
I have often tried to channel Phill’s courage and Stacey’s selflessness, but their qualities aren’t easily emulated. For all those years, the two of them did every single thing in their ability to keep Phill here, and it was powerful to witness.
At Phill’s funeral, the priest quite loudly said that through the stories of Phill shared at the wake, he believed that Phill’s courage was best summed up by: “I’M STAYING!” Through every awful thing the cancer and treatments hurled at him, he ducked, and proudly stood back up. For his boys and for Stacey. For his family and everyone who loved him.
But I doubt anyone can truly imagine the pain and mental anguish he fought through to keep saying, “I’M STAYING.” It had to be unbearable.
But Phill did it. He survived eight long years with everything life threw at him. And for those periods of time, albeit too short, where the cancer stayed still, not growing but surely not leaving, Phill lived! He played golf, baseball, and all the sports with his boys. He hiked with Stacey. And helped build his family a new home.
Cancer didn’t take from Phill. Phill took from cancer. He gave it no time, satisfaction, respect, or dignity. He beat it back and continued on. For eight long years, Phill stayed here! He constantly survived and recovered. And built and rebuilt. All the while teaching others about strength, pride, humility, and courage. And resilience.
If I’ve learned anything about death after these tragic events, it’s that I don’t know much about death. But I’m certain that the way Phill lived in the face of the unknown was something to behold. The loss of Phill (and Carlie) is devastating and brutally unfair. It’s the stark and painful reminder that there’s a lot we cannot possibly see or understand. But I continue to believe in miracles both large and small. The war Phill waged on cancer was nothing short of miraculous. And I believe there’s more to his story (and hers).
The last card I sent to Phill had a lot of significance to me. It was a photo of wild horses taken in the North Dakota Badlands. I held onto it for years and saved it for just the right time. Until something told me to send it to Phill and say nothing more than, “My prayer for you and Stacey is that this could be different.” I desperately wanted it to work out differently for them.
In the too short amount of time I knew Phill, in his life that heartbreakingly ended far too soon, he taught me a lot about resilience, and he had an incredible impact upon me as I journeyed through my 3Rs. Phill was the bravest, humblest, SuRvivor, Recoverer, and Rebuilder I’ll ever know.
You left an enormous legacy, #33. You are a testament to Just Keep Swimming.
Thanks for letting me know you.
Love ~ jackie
“You know a dream is like a river
Ever changin’ as it flows
And the dreamer’s just a vessel
That must follow where it goes
Trying to learn from what’s behind you
And never knowing what’s in store
Makes each day a constant battle
Just to stay between the shores
“There’s bound to be rough waters
And I know I'll take some falls
But with the good Lord as my captain
I can make it through them all
“Yes, I will sail my vessel
‘Til the river runs dry
Like a bird upon the wind
These waters are my sky
I’ll never reach my destination
If I never try
So I will sail my vessel
‘Til the river runs dry” ~ The River by Garth Brooks
Photo Credit: Stacey (She thought some photos by rivers would be perfectly suited for this piece and I agree.)
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/ / The JM Stebbins blog is an autoimmune encephalitis blog by former lawyer and autoimmune encephalitis survivor, Jackie M. Stebbins.
Jackie M. Stebbins is also the author of Unwillable: A Journey to Reclaim my Brain, a book about autoimmune encephalitis, resilience, hope, and survival. / /