Happily married for more than 10 years, Bill and Chris Schaffert are thankful they found each other. Bill and Chris were asked on Valentine’s Day: What is the secret to your marriage?
“A sense of humor!” Chris quickly replies.
Bill suffers from an undiagnosed neuromuscular disease, similar to Spinal Muscular Atrophy. It has left Bill dependent on mechanical ventilation. Just the same, Bill and Chris continue to make each other laugh every day.
A Second Chance
“I believe everything in life is a choice. Bad things may happen to you, but you still have a choice about how to react,” Bill begins.
At 29, Bill started losing the feeling in his arms. He was later diagnosed with Amyotrophic Lateral Sclerosis (ALS), known as Lou Gehrig’s disease, and given three years to live. Seven years later—and what seemed to be a slow progression of ALS—Bill’s physician retracted his ALS diagnosis.
Bill still does not have an exact diagnosis, but he says he doesn’t need one.
When asked about how he remains optimistic, he replies, “I’m not giving this disease any more time or energy. It’s taken enough from me.”
Bill’s innate competitiveness is one of the ways he continues to persevere. “I like to see how I can beat the disease,” he explains.
A “total jock” in high school, Bill played nine holes of golf every morning until the progression of the disease made it impossible. Chris makes a joke and says, “Golf is the reason he waited so long to get married.”
When Bill couldn’t walk anymore, he traded in his golf clubs for a chess board—and became an expert in the game of chess. Bill proudly admits that at his peak, he had 48 different online chess games going at the same time.
A Love Story
Bill and Chris met in 1999 when a mutual friend introduced them. Bill was living alone and looking for someone to help him get into bed at night.
“We fell in love in the bathroom,” Chris laughs. A few years later they were married and honeymooned on the East Coast seeing Monticello, Colonial Williamsburg, Washington DC, Lancaster, and Niagara Falls.
She continues, “It wasn’t just about the care; we really love each other.”
Choosing to Live on a Ventilator
Bill worked full-time until early 2006. At his retirement, Bill and Chris moved to Arkansas where Bill’s parents retired. Shortly after the move, Bill went into respiratory failure. Chris did mouth-to-mouth resuscitation for 17 minutes while she waited for an ambulance to arrive at their home.
“I thought I lost him,” Chris remembers. At the hospital, while Bill was unconscious, Chris was faced with a continuation of life decision for her husband. To keep Bill alive, he needed a tracheostomy and then would be ventilator dependent for the rest of his life.
In that moment, Chris replied to the physician: “I can’t make that decision by myself. Bill needs to make that decision himself when he wakes up.”
Chris gathered the information her husband would need to make the decision—information about insurance, respiratory equipment, nursing care, quality of life, and advice from family and friends. She drafted a list of pros and cons for Bill.
In that moment, Chris looked into her husband’s eyes and replied, “All you need to know is I’m here. I’m here if you decide to go on the vent, and I’m here if you don’t. I’m here for the long haul.”
In the end, Bill and Chris decided together.
In September, Bill began Intrapulmonary Percussive Ventilation® (IPV) treatments at home through Independence Plus’ pilot program. Since Bill began using IPV®, his ventilation and oxygenation have improved significantly due to the positive lung recruitment and mobilization of his lung secretions.
“Who would’ve thought? I’m turned on by mucus!” Chris laughs.
Bill and Chris are both happy with his progress; they experience it continually through his improved ability to voice.
Today, Bill and Chris live in the Chicago suburbs and feel blessed to have great people in their lives—their family, friends, nurses, therapists, and caregivers—and they continue to laugh every day.