**This is a guest blog written by Janie Swingle, a student at the University of St. Thomas in St. Paul Minnesota and our summer intern.**
I was eighteen when I learned why my grandfather’s arm had been tingling for over two years. My mom told me the doctors had finally detected the cause. I was stunned when I heard the words “terminal” “fatal” and “nothing we can do.” It was ALS. Amyotrophic Lateral Sclerosis. It's a disease that attacks neurons in the spine and brain that communicate with the body's muscles, paralyzing those used to move, to swallow and ultimately to breath.
To me then, ALS was a horrible disease, a condemnation to death, but I had the luxury of stopping there---of defining it as a vague, faraway horror and not knowing exactly how it slowly, painfully, irreversibly kills someone. I knew ALS based on a handful of fundamental facts but had no personal connection to make it emotionally relevant to me...until now. My grandpa (Bumpa, as we call him) was in his late sixties when he received his diagnosis. He seemed young and alive, and I believed there was no way he could die. For the first time in my life, I understood what denial feels like.
My family had recently lost my uncle to a decades-long battle with AIDS, and I remember learning about Bumpa’s disease and thinking, “This is not fair.” This family is too young, vibrant, and loving to be saddled with this kind of burden...again. And it isn’t fair.
Even months after Bumpa’s diagnosis, I don’t think I fully acknowledged his approaching death. Logically, I understood what was happening and what would happen. Emotionally, though, I estimated he would decline slowly and even somewhat gracefully. After all, my uncle lived with AIDS for longer than I had lived at all, and his long fight modeled what I had come to define as “terminally ill.” With Bumpa, however, the decline was the opposite of slow, manageable, and deniable. It was rapid, ugly, and heartbreaking. That tingling that had worked its way up Bumpa’s arm soon manifested in the cruelest of ways, attacking his internal organs, his vital life systems. As the months passed and he and my grandmother moved to a house down the street from me, our family would gather much as we always had--frequently and casually. Not much had changed, and yet everything was tense. Or delicate. Or sad. Or frustrating. I began to get anxious about family dinners because sometimes Bumpa would choke, his esophageal muscles and respiratory system failing him in these most basic functions. ALS began to intrude even the simplest rituals, the parts of life that had felt easiest and most natural. There was nothing we could do to help him as his physical body deteriorated, and this is perhaps ALS’s most painful jab.
Bumpa died in November 2013, less than one year after his diagnosis. Because his disease accelerated exponentially in the final months, and I had moved away to college in September, I felt like I barely got to grapple with his end before it actually came. I’m not sure I’ll ever feel like I understand why his final year of life had to be marred by such grief, but I will always be grateful that my entire family was with him when he died. I witnessed what we usually prefer to deny: a conclusion of this life. Bumpa was not religious, so I don’t know what comfort, if any, he sought in facing death. I do know, however, that he was the most selfless person I knew, and he would be mostly concerned with how we are healing and living without him.
This year marks the third anniversary of Bumpa’s death, and I still often forget that he is gone. I catch myself consciously remembering that he won’t ever make me breakfast again, go on another family ski trip, or hike the Grand Canyon for the umpteenth time. Perhaps my age (I’m 21) affords me the tendency to view the end of life as something to deal with later. Perhaps this mentality is an instinctual default, but a few months before Bumpa died, I found the energy to acknowledge my denial and write him a letter (in the form of an email, because sitting at his computer was one of his only independent activities at that point.) I told him what I wanted him to hear from me before he died. It was uncomfortable, but I forced myself to say, “Hey, Bumpa. I know you’re going to die very soon. But I want you to know…”
Why was it so uncomfortable to acknowledge his death? Doing so made me feel like I was hurting him, inflicting more pain by forcing him to acknowledge his death, as if it didn’t already cloud his thoughts. It also pushed me to recognize my own “temporar-ity,” if you will. Why does it take losing someone close to us to remind us of our fragility? It certainly doesn’t have to. Our temporary nature makes an attitude of gratitude for this life even more important. Why does any of us die the way we do? Why brain cancer for some, a car accident for others, and peaceful slumber for those deemed “lucky?” I simply don’t know.
What I continue to learn from my experience with ALS is none of us is too young to think about death. Let us grapple with it early and often, approaching it with intention. In doing so, our collective fear may start to soften, at least a little. Maybe by the time I reach my end, be it when I’m thirty or ninety-five, I don’t feel terrified. Maybe I feel comfortable with an end I’ve actively expected. And hopefully, gratitude overwhelms and accompanies me. I trust it did for Bumpa.
The Blog Authors
Bruce started writing about living with ALS shortly after being diagnosed in 2010. The blog is called the "Dis Ease Diary."
Cathy is a journalist so she's used to writing. Blogging is different because it feels so personal and that can be scary. Bear with her. She'll figure it out!
You may hear from Ev from time to time. Ev is Bruce's beloved wife. She's a music teacher at a French immersion school.