You’d think that being diagnosed with a fatal illness like ALS, also known as Lou Gehrig’s disease, would make anyone depressed, angry and hopeless. While those reactions are completely normal, don’t tell that to Stan Williams.
The North Manchester man is battling his disease with three overarching lessons:
- Our worldview determines our outlook.
- We must define our battles. We must not let them define us.
- We must never let anyone just assume that you love them.
Stan shared these three lessons with Visiting Nurse staff during the annual Employee Appreciation Party in June, and his inspiring words and boundless enthusiasm were well received. Stan and his wife, Lisa, said they were so grateful for their Visiting Nurse care team, which has allowed Stan to stay in his home surrounded by his loved ones as his disease progresses. That support comes from people like you, who help Visiting Nurse expand care across the region, ensuring that no one who needs our specialized hospice and palliative care goes without.
The Williams chose Visiting Nurse to provide their care because of our long-standing reputation in the region. “When Lisa and I began to talk with hospice companies, we very quickly found the difference between Visiting Nurse and everyone else,” Stan said.
Those differences include our staff’s compassion, and “greatness” in the work we do every day, he said.
“You’ve seen the battles that everyone faces,” Stan told the staff. “When a battle comes your way, you are going to rise above it and not let that battle define you.”
Providing care for patients like Stan includes helping with bathing, feeding and dressing – activities that most of us take for granted because we can do them ourselves. ALS, also known as amyotrophic lateral sclerosis, is a progressive neurodegenerative disease that affects nerve cells in the brain and the spinal cord. Stan’s symptoms began in 2016, after he began experiencing leg weakness and foot drop. He began treatment at an ALS clinic in Indianapolis before choosing to cease treatment and begin hospice care.
“I have never asked ‘Why me, God?’ If I was to ask that, I’d have to ask why not someone else,” he said. “The question is not why me, but what now? How shall I live?”
Stan and Lisa and their two sons, Kyle and Alec, choose to live with a positive attitude.
“I find that life is good. Life is not perfect. Life is not easy. But life is good. I may have ALS, but ALS doesn’t have me,” he said. “Of course, I have some down times and painful moments. My 61 years are much greater than my ALS – much more joyful, fulfilling and blessed.”
Choosing to receive hospice service from Visiting Nurse means that Stan and Lisa have time together, to be a family while Visiting Nurse supports Stan in his illness. Their meaningful moments include time with their sons, strengthening their family bonds. His therapies with Visiting Nurse include music therapy with Visiting Nurse’s Music Therapist, Emily Paar. Music therapy allows Stan time with his children and grandchildren, making musical memories that will live on in the hearts of those who love Stan. Music therapy is a service Visiting Nurse can provide because of the generous donations of people just like you.
One thing Stan wants this family to know is how much he loves all of them.
“You must not ever let anyone assume you love them,” he said. “Your family dynamic will be rich and strong if you say four things: Please forgive me, I forgive you, thank you and I love you. We decided our sons would know we love them. There’s not three more powerful words than I love you. Say these words often and without restraint. We can never say it too much. These three words will heal broken hearts. They lift our spirits when we say them and they lift the spirits of those we say them to.”
Stan and his family know his disease will claim his life. He’s a man in a race against ALS, he says, “from now until muscle death,” but he’s planning on living every moment in love. He wants his last mile of that marathon to be his best.
“Let’s all build in ourselves an intense urgency to love, live, laugh, share and leave a legacy in the hearts of those you leave behind.”