There are figures in most of our lives that have a lifetime of impact. Those seemingly indestructible individuals, who are the ones we can’t fathom getting sick or weak. The steadfast, strong anchors that are supposed to be the ones you can lean on for anything.
For Molly Beane, that person was her dad, John.
John came into Molly’s life in her early teens when he married her mom, Linda Kuhr. John was tough – a Vietnam war veteran and hardworking union man, he exuded strength and stability. In Molly’s eyes he was a strong man who never wanted to complain or seem weak.
“He was the rock of our family,” – Molly Beane.
Then, John’s health began to decline and everything changed.
Molly’s pre-ALS memories of John include moments like her 2016 wedding, where every photo of him shows a strong man smiling and dancing like his muscles have no limits.
In 2017, things started to seem different. When Molly traveled from her new home in San Francisco back to her childhood home of Cincinnati for Thanksgiving, she recalls leaving the trip and telling her husband that John just didn’t look like he felt good.
What followed was 2018, a stressful year filled with doctor’s appointments, declining health, and months upon months of confusion. As the year progressed, John’s foot began to drag and his slouch became more prominent.
Molly started doing her own research, after feeling frustrated and lost. As she ticked off her dad’s symptoms everything pointed towards ALS. She called her mom immediately and encouraged her to take him to a neurologist to rule out ALS. However, it wasn’t ruled out.
On February 8th, 2019 they finally had a diagnosis.
Their family rock now needed them to be his rock. Before his health declined, John was a retiree who filled his days making sure his wife was taken care of. Doing the dishes, cooking the food, cleaning the house, and working part-time to continue providing.
The family asked him what he wanted to do with his remaining time. Not surprisingly, his first choice was to continue working as long as possible so he could still offer support. His second was to see Pike’s Peak in Colorado with his own eyes.
John’s health had already begun to decline at that point, so traveling from Ohio to Colorado was not an easy or cheap feat. For her birthday, Molly started a GoFundMe campaign and raised enough funds to pay for the family to take a big, retrofitted van with John’s power chair, bypass machine and supplies across the country together. One of the many challenges to planning the trip included finding an ADA-compliant hotel room nearby, eventually finding the only room in the area at a local bed and breakfast.
Always stoic, even when they knew his pain must be great, John rarely complained or spoke up about his discomfort.
On February 8th, 2020 one year to the date of John’s ALS diagnosis, he passed away with Molly and her mom, Linda, at his side.
There is a trait that John passed on to Molly, selflessness. After hearing about John’s struggle with ALS, we find out that in August of 2018, right in the middle of the year of confusion, uncertainty, and no diagnosis, Molly suffered a nearly life-ending traumatic brain injury.
So while she watched her hero fight, she was secretly fighting with the long-lingering effects of the incident such as headaches, dizziness, nausea and more.
The effects of ALS reach so much further than the patient. The loved ones, family and friends who take on the title of caretaker, cALS, feel the effects in their lives too.