Making the world a better place
Sep 01, 2017 08:30AM ● Published by Ben Scott
From left to right: Suzanne Heronemus, Steve Heronemus, Oliver Shock, Erik Shock, Michelle Heronemus
At the age of 45, everything changed for Steve Heronemus. The Batavia resident, accomplished musician, husband and father to Michelle, John, Matthew and Claire was diagnosed with amyotrophic lateral sclerosis (ALS), the progressive neurodegenerative disease that affects nerve cells in the brain and the spinal cord.
“Steve was diagnosed as definitively as he can be diagnosed, without an autopsy of his brain, at the Lois Isolia ALS Clinic at Northwestern in Chicago in July 2005,” said Steve’s wife Suzanne.
On his blog, beLIeVE with Steve (steveheronemus.com), Steve described the onset of his symptoms and experiences with medical professionals leading up to his diagnosis:
Beginning in 2000 I began accumulating a series of odd, seemingly unrelated and minor, medical issues. An emergency room blood test showed elevated levels of muscle proteins, meaning muscle was breaking down. The most likely cause was a mild heart attack, but my heart checked out fine. I began having sporadic trouble coordinating my fingers while playing piano and recorders. My forearm cramped badly while carving pumpkins, pulling my fingers into grotesque and horribly painful positions. My shoulders and arms began twitching non-stop, and I fell while running on an indoor soccer field.
And so we began a multi-year odyssey of multiple doctors, in multiple disciplines, receiving opinions such as pinched nerves, I don’t know, and my favorite diagnosis, boy, getting old is rough.
Eventually, a neurologist noticed the muscles in Steve’s right hand were atrophied and immediately gave a diagnosis of ALS.
“The doctor told me I had two to three years to live. Good-bye, call me when you need a wheelchair. He also used the phrase ‘get your affairs in order,’ which I find so patronizing,” Steve said.
In ALS (also known as motor neuron disease (MND) and Lou Gehrig’s disease), motor neurons that carry impulses from the brain to the muscles gradually cease functioning and die. Currently, no cure for the disease exists and those suffering experience muscle weakness, difficulty speaking and swallowing and eventually complete paralysis. (lesturnerals.org).
The weight of such a serious diagnosis would blindside any individual, and as parents Steve and Suzanne bore the additional burden of communicating Steve’s condition to their children and carrying on their responsibilities as parents.
“We spent that week mourning a future we had lost—our children’s graduations and weddings, grandchildren we had always dreamed of enjoying together, global travels, a 50th wedding anniversary,” Suzanne said.
When it came time to break the news to their kids (aged 10–18 at the time), Steve and Suzanne spoke openly and honestly about their father’s diagnosis.
“I explained what was going to happen to me, but emphasized what we had learned and that there was no way of knowing when these things would happen. I spoke about the gift of time and the need to make the time we had together count, and I committed to them that I would fight this, be honest with them, and that I would always love them no matter what happened to me,” Steve said.
Understandably, each child processed the news differently.
“I did not react well,” Steve and Suzanne’s oldest daughter Michelle admitted. “I was working at a summer camp and [my parents] drove up to deliver the news. It’s not really the sort of thing you want to deliver over the phone. That night is completely black for me. My friends told me later I went to the top of the hill at camp and screamed for a while and then went on a hike down a cliff by myself.”
At 12 years old, Michelle’s brother Matthew said he was too young to fully grasp the severity of the situation.
“I remember my parents telling us all this in our living room, about what was going on. And they were breaking down into tears. The room was dark, it was night and I remember my mom and dad crying. I got up to the couch to sit next to my mom to try to comfort her and I just started crying, too. I didn’t understand what I was crying about necessarily but it was hard seeing my parents so upset.”
Conversely, Steve and Suzanne’s daughter Claire said that, to a certain extent, her age was an asset in coping with her father’s disease.
“As the youngest child, I feel that I grew up with this illness. It has forced me to grow up and mature beyond my years. But I almost see my situation as a blessing. I don’t remember a lot of my dad pre-ALS …I don’t know what the rest of my family is missing, outside of stories and shared memories.”
With the future unclear and his body slowly failing him, Steve determined to fight and remain committed to his responsibilities as a husband and father. Michelle recalled one instance of her dad’s perseverance early in his journey with ALS when she was having a difficult time while away at school.
“He came to visit me—on his own and at some personal risk—when I was in college 10 years ago this fall,” said Michelle. “I was not doing very well mentally, and I know it took a lot for him to make that trip. My parents never missed a college performance, theatrical or musical, and now since moving back home and becoming a mom, watching him interacting with my son is so joyous.”
Indeed, Steve continues to beat the odds 12 years after his official diagnosis, and Suzanne said Steve’s slow disease progression has afforded the couple time to anticipate and prepare for the inevitable changes to his condition. Steve has seen all of his kids graduate from high school, two graduate from college and two get married. This year he and Suzanne celebrated their 33rd wedding anniversary, and the couple has watched three grandchildren come into the world. To Steve, Suzanne and his children are precious gifts, and even as he battles the pain and limitations of his disease he credits his family’s courage and support throughout his journey.
“My family has had to take on so many different roles in response to my disease and, in many ways, ALS is harder on spouses and families than on the person afflicted with the disease,” Steve explained. “Beyond taking over the household roles I once filled, from income-earner to chef to spider-killer, my family are now physical, occupational, respiratory and speech therapists, medical advocates, insurance experts and nursing care providers.”
Suzanne catalogued the many ways she helps Steve on a day-to-day basis.
“When Alyssa (Steve’s caregiver) is not here, I manage all of Steve’s care,” Suzanne said. “I get him out of bed in the morning and put him to bed at night, take him to the bathroom, take care of all his hygiene needs, dress him, give him his medications, give him his nutrition through his feeding tube, set up his tablet, put his VPAP on, make sure he’s warm enough and scratch his itches. When we go out, it takes time to load Steve in our van and get him all strapped in, plus we have to be sure we have all necessary equipment with us.”
Fortunately, in his current state of quadriplegia, technology has afforded Steve a degree independence and freedom; Steve’s wheelchair allows him to get around safely, and he writes and communicates using a computer that tracks his eye movements.
“I am always mindful of how to let my children, and now my grandchildren, know what kind of person I am and what my values are,” said Steve. “I don’t consider my primary role of being a father, that of loving and teaching my children, to be over just because I have a disease.”
Steve spends one-on-one time engaging in different
activities with each of his kids. Michelle and Steve go to movies together,
while Steve and John bond watching football and soccer. With Matthew, Steve
shared his love of sailing at the America’s Cup sailing races in Chicago last
summer, and Steve’s work with the Sailing Education Association of Sheboygan
(SEAS) has also made it possible for Steve to continue participating in his
favorite pastime with Matthew, Claire and his son-in-law Erik—SEAS develops and
tests systems that allow people with mobility disabilities to sail
“One of my favorite memories since the diagnosis has to be going sailing with [my dad] up in Wisconsin in the last couple years or so,” Matthew said. “That’s a blast being out there with him and seeing what he can accomplish.”
In his own words, Steve talked about the liberating experience of sailing with SEAS in a blog entry from 2015 titled “Sailing Away, and Sailing Toward:”
There are no words for what this day meant to me. Joyful, life-giving, food for the soul, strengthening. These words were certainly present, but they are wholly inadequate. Feeling the wind, hearing the water rush by the hull, and seeing the borderless, boundary-free horizon was an experience of the transcendent.
As one gets to know Steve, it becomes obvious that his joie de vivre extends into all areas of his life. Since his diagnosis and throughout his physical decline, Steve has advocated tirelessly for those with mental and physical disabilities. He and Suzanne are active with ALS advocacy and education, and have raised tens of thousands of dollars for the Les Turner ALS foundation with their walk team beLIeVE with Steve. Additionally, Steve and Suzanne often talk with people newly diagnosed with ALS, and Steve spends time each day offering support and counsel to other PALS (people with ALS) via email or Facebook.
With seemingly boundless energy, Steve also wrote and published a book, Shells: Sustained by Grace Within the Tempest, a collection of spiritual meditations on life that use seashells as a metaphor. Steve plans to publish a Bible study companion for the book, and he’s also in the process of launching a subscription menu service.
“For a very small membership fee, people will receive seasonal recipes inspired by my international travels,” Steve said. “I will include links for purchasing natural and organic ingredients from local and regional sources.”
While Steve’s stamina and breadth of accomplishments are undeniably remarkable, those who know him best said they’ve never expected less.
“My dad’s zeal for life has never surprised me,” said Claire. “In many ways, I feel I have inherited both his and my mom’s passion for philanthropy. They are both incredibly dedicated and they have the largest hearts. They are my superheroes, or mythical creatures.”
Michelle expressed similar sentiments regarding her dad’s achievements, but she also made sure to shine a light on qualities and interests which, to her, define his singular personality.
“My dad has a wicked sense of humor,” she said. “He’s got a great dry wit. He introduced us to Monty Python and the Holy Grail when my brother John and I were deemed old enough to watch it. If I’m not mistaken, we watched it and recited it often enough that some of my sister’s first sentences were quotes from that movie—much to my mother’s chagrin. He’ll listen to nearly any music, too. In one week I walked in the door from work to hear Beethoven, Deadmau5, Rammstein, jazz and The Who. His favorite animal is a dolphin but his favorite dog is an Irish wolfhound.”
The love Steve’s family radiates for their husband and father, the words they use to talk about him, the stories they share and their ceaseless dedication reflect the character of a man whose life example escapes any reductive definition of what it means to live with a disability.
“I am so incredibly proud of Steve for the way he lives his life, for the way he gives back to others,” Suzanne said. “He makes the world a better place not only for those with disabilities, but for everyone.”