How ALS Changed my Family
By Tony Heyl
Originally posted in February of 2016
A fatal disease like ALS changes every family that it touches. That comes with the territory. Suddenly a vibrant person is unable to move, relationships are suddenly altered as family members are thrust into the role of caregiver, and everyone’s focus shifts to the immediate health emergency. After working at The ALS Association Greater Philadelphia Chapter for nearly five years (now over 7 as I share this in 2018), I’ve seen dozens and dozens of ALS stories that share many similarities.
ALS also changes how we see people. Obviously, it changes how we see the person directly affected by the disease, but it also gives us perspective on all of the other people who become caregivers.
My family perspectives began to change when my grandfather was diagnosed with ALS in early 2005. He was showing symptoms of something being wrong months earlier with a foot drop and his body not reacting as it once did. We held a birthday dinner for my dad a few months earlier in late 2004 on a day when my other relatives from Texas were in town and my grandpap nearly fell down the step at the restaurant. Something was wrong, but we didn’t know what.
To listen to my podcast with my dad about grandpap’s ALS, look for the ALS Podcast on iTunes or listen now at http://alsphiladelphia.podbean.com/e/episode-55-thomas-heyl/
Over the next two years, plenty would go wrong with my grandfather. He lost his ability to walk, couldn’t get into his own bed, couldn’t stand up, and eventually struggled to speak, eat, and breathe. That’s the reality of ALS. It’s a reality I knew very well before I walked into The Greater Philadelphia Chapter for my first interview.
However, instead of focusing on what was wrong, I would rather share what I learned was right. Most importantly, I learned about my father and his true character. My dad and I have always been close and I have always been close to my grandparents too, but ALS, especially coming at a time where I was becoming an adult myself, put a lot of things into perspective.
From the start of my grandfather’s journey with ALS, going to doctors to find out what was wrong, navigating insurance and lawyers, and then working on plans for long term care, my dad was thrust into the role of lead care giver. A lot of that was because he wanted to do it. He chose to visit his dad six, sometimes seven, days a week. He chose to sit with his parents to have very difficult conversations about what was coming up next with the disease and how to get their legal, health, and financial affairs in order. He did it all with patience and love, something that even I didn’t quite appreciate enough until I saw similar stories of other ALS families.
My dad and I both learned a lot about my grandpap during this two year struggle as well. He had served in the Navy starting at the age of 17, stationed in Alaska and Guam to intercept communication from the enemy during World War II. Then he’d served during peace time, travelling to Japan and other places in the world as a member of the military. In the midst of all of that service, Regis Heyl married Bertha, the love of his life, and they would stay together for over 50 years.
Despite having his own really interesting life, my grandpap always chose to be more in the background. He was very proud of what he’d done, and rightfully so, but he loved my grandmother more than he loved himself. When my grandparents would babysit me so many years ago, my grandpap would be the one up early and we would play with Legos or Super Mario Brothers on Nintendo until my grandmother woke up and strolled downstairs way after 9:00 in the morning. “Here comes the boss!” he’d laugh. It was never making fun of her. He really did think of her as the one in charge.
Later, when my grandmother didn’t feel like cooking anymore, he’s remark “The kitchen’s closed!” and laugh. They went on weekend trips to Atlantic City every month, which seemed normal to me, and went on trips to Hawaii, Texas, and Germany, which my aunt and uncle helped make possible so that they could see their family history. Yet, for all of their travel, and all of the life that my grandfather had before this, what he cared most about was spending that time with Bertha. Even after 50 years of marriage, he still called her his girlfriend.
So when ALS took his body bit by bit, my dad gave him what he had — his time and attention. He sat with him to give my grandmother a break and he learned about his family, his military service, and just his perspective on life. I’d visit with him on Thursdays for a few months and we’d watch WWE Smackdown (he was a wrestling fan from way back in the days of Bruno Sammartino) and he’d hoot and holler at all of the acrobatic moves. He’d spent 50 plus years cheerfully putting his girlfriend front and center. Now we could let him be the star for a little bit.
My grandfather passed away from ALS in 2007. Each month with the disease was worse than the one before it. His death was probably easier for him than for everyone else as he went peacefully. While we spent those two years letting him be more of the star, I realized what a star my dad was as well. Like my grandfather, my dad is also not very boastful and rarely puts himself front and center. I started to see the parallels. Both are kind, caring, family oriented people who value experience and time more than extravagance.
Those threads continue to this day. My mom has lived with MS for a long time and I see my dad’s approach to her in many of the same ways. While nobody’s perfect and we all stumble here and there, he’s the supportive father and husband that you would want to see by your mom’s side through all of the trials and tribulations of a tough disease. They may use different words and express it in different ways, but the way my dad looks at my mom reminds me of how Rege looked at Bertha for so many years.
So, seeing all of this transpire through the lens of a terrible disease, I am very grateful to have a good life example for how to be a husband, father, and son. ALS took a lot from us, as it does to every family affected by it, but we also gained some closeness and appreciation that is hard to measure.
My name is Anthony Regis Heyl, with my middle name taken from my grandfather of course. Seriously, who would pick a middle name of Regis if not for family reasons? When my first son was born in January 2014, I didn’t have a lot of traditions, but that seemed like a good one to start, so I named him Andrew Thomas Heyl to honor my dad. Maybe, if I can be as good of an example of a husband, father, and son as my dad was to me, Andrew can carry on this simple tradition in a few years. But not until he has a college education, is married, and has a good job, ok Andrew?
I talked to my dad for a podcast about that two year battle with ALS. We talked about the support from The ALS Association, the advances since 2007, and the struggles of being a family caregiver. Please click here to take some time to listen to our talk. If you’d like to advocate with me to fund ALS research and patient care, email me at Tony@alsphiladelphia.org
Thanks to everyone who helped my grandfather and my dad and thanks also to every person who takes on the challenges of caring for a person with ALS. I look forward to working with you to continue to try to find a cure.
Love you Dad.