Giving Perspective
A heaviness permeates this room filled with spouses, children, friends, and relatives, all of whom have been touched by the devastation of ALS, or Lou Gehrig’s disease. My heart breaks as I sit here, looking out on all these faces that are looking expectantly back at my family. They’re looking for answers…and hope. Sometimes I fear their expectations. Maybe they’re hoping we’ll give them a map showing them the way out of their situation. Or maybe they’re thinking, “Yeah, well you’re on TV and you wrote a book.” We never want to be put up on any kind of pedestal. We’ve had opportunities to share out story in the media, but that doesn’t mean that we don’t live with ALS everyday. “Your family has it all together.” We’ve been where you are. It’s taken us 20 years of adjustments, sacrifices, prayer, struggles, frustrations, asking for help, road blocks, trouble shooting, and red tape to get to where we are today - and we still don’t “have it all figured out.” “You’re in a whole different league.” There is nothing in and of ourselves that has caused us to live with our situation as victoriously as we do. We have no magic beans or secret formulas. “You can’t possibly know what we’re going through.” But we do know.

As we share our story - our struggles, our victories, and our disappointments, the heaviness in the room begins to lift. Perspective. After fielding technical, mechanical, and logistical questions, it inevitable comes around to coping. “How do you do it? Emotionally? Day in and day out. How do you keep a positive attitude? How do you keep going? How do you keep your sanity? How have you made it this long?”

Though families find themselves in heartbreaking situations and seemingly unbearable circumstances, we are here to testify that, “With God, all things are possible…” There is only one answer as to how we doe what we do. And why.

Our faith in Jesus Christ.

How does Charlie get up each morning knowing that again today, just like yesterday and the day before, and the day before, and tomorrow, and the next day, and the next day, and everyday after that - he can’t move? It takes two to three hours for someone else to wash his hair, comb it just right, shave and dress him. Everyday. How does Charlie do it? From his faith in Jesus Christ comes a supernatural strength to endure. Why does Charlie bother to get up each morning? Because the Lord has given him life, and with life, purpose. His life doesn’t have purpose because of the ALS. The Lord has given Charlie’s life purpose in spite of the ALS.

The gift of life.

Many have expressed that they are simply overwhelmed by our willingness to come to meetings and give of our time, and speak so candidly, and share so openly. They can’t believe that we give out our phone number and invite anyone who needs to, to come to our home to see how we set up Charlie’s equipment. Lucy explains that, “Nineteen years ago, when Charlie was diagnosed…we didn’t have anyone to call.”

Out Visiting Other ALS Patients…
When we go to visit other ALS patients it’s usually a “family affair.” Relatives, friends, other patients from the hospital or facility, and different nurses and therapists who slip in, all crowd around. Most of the people we visit have either been told they can never go home again or are working on plans to go home and are simply facing many new real fears and anxieties. Our goal is to not only answer questions and offer support, but to show them face to face the mobility and freedom that Charlie has in his wheelchair with his portable ventilator.