My maternal Uncle Dave died of ALS at the age of 50, when I was a sophomore in high school.
In the two decades since, his death has haunted me and my family. Though we are thankful for the increased awareness and funds it has generated, the ALS Ice Bucket Challenge has triggered the old sadness and fears that we all dealt with for so long.
As the existentialist and nightstand theologian of the family, I’ve wrestled with many common but useless questions surrounding Uncle Dave’s death. Why did it happen? Was there some greater purpose or lesson? Will it happen to others in the family? Did he ever find peace?
I questioned my mother ad nauseam over the years—thinking maybe she had some comforting insight in her final conversations with him and his doctors. For the most part, she begrudgingly obliged with whatever snippets her heart could muster.
But one day her motherly well ran dry and she just snapped,
“You know, he would be thoroughly pissed that you’ve wasted all this time thinking about it.”
She was right. For 20 years, I’ve only remembered Uncle Dave’s death and nothing about his life.
Over the past few weeks, as my Facebook feed flooded with videos of friends and former presidents dumping ice on their heads, I gave myself a different challenge: to remember Uncle Dave’s life.
I remember him as the jokester, the proud Aggie, the avid hunter and the naturalist. I remember the Christmas when someone gave him a package of bikini briefs as a joke and he modeled them to a chorus of laughing shrieks from his nieces and nephews.
I remember him being covered in blood through most of hunting season and that he made the best venison jerky imaginable. I remember bouncing up and down with him in his truck as we checked cows and him rattling off an impossible list of facts about every bird we saw.
Even when he got sick, I saw him happily entertain visitors from all periods in his life—even his arch nemesis Dan whom he deemed the most annoying man alive. Some were better at hiding their discomfort than others but most walked away sad and fearful.
I cannot speak to what he went through physically and in no way will I minimize the suffering he experienced. However, beyond the physical deterioration, I can’t help but wonder if we all compounded his suffering and our own by focusing on the way he was dying versus celebrating the way that he had lived.
When diseases like ALS come into the conversation, they are inevitably coupled with discussions about dying with dignity. But part of dying with dignity means resting in the reassurance that you won’t be solely remembered as the uncle who spent the last few years of his life in a recliner struggling to speak and breathe.
And that is the responsibility of the survivors. Sure, we can be sad. Sure, we ask questions and demand more research but we do so with our loved one’s life in mind.
A therapist friend insists that our fear of death and disease stems from our inability to embrace the life we have now. In other words, our choosing to focus on the death—any type of death—can be as much about our fear of living fully and authentically as it is on the disease. We fear that our loved ones didn’t live their lives fully. And we see that we aren’t living our lives fully now.
Remembering him standing in awe of a simple cowbird, I believe my uncle did live fully.
But by obsessing about his death, I am not honoring that.
I wouldn’t choose an ALS death. Probably like anyone, I would choose to die in my sleep at age 100 after a day of mountain biking with my fan base. But regardless of what my cards hold, I can honor Uncle Dave and myself by focusing on who he was.
And as I sit with current friends and family diagnosed with life-threatening conditions, I will do my best to learn from our final years with Uncle Dave and not shake my fists at their deaths but hold their hands and rejoice in their lives.
In my incessant questioning about Uncle Dave’s disease, my mom was able to come up with one helpful tidbit.
Yes! I leaned in and readied myself for an existential goldmine. She recounted uncle Dave’s only regret of ALS.
I wish I had laughed more and stressed less? I wish I had watched more sunsets?
“I wish I had punched Dan in the face while I still had the strength.”
That was my Uncle Dave.
Love elephant and want to go steady?
Editor: Ashleigh Hitchcock
Photos: courtesy of author, Wikimedia