The day in 2005 when we received “our diagnosis” of ALS was clearly the worst day of both of our lives. In that instant our lives were changed forever. In the years since, things that we used to take for granted have become so precious. Each day is a gift — not a given.
In caring for Augie, I have come to understand what it is to be truly human, what it means to love and to be loved — to have a genuine partnership of trust and respect. This is one of the gifts of this disease. It’s a privilege to care for another and share intimately in his or her life. It isn’t always easy or pleasant, but it’s not without its rewards. Humor and kindness make the tough stuff more manageable. I’ve learned to be flexible — just when I think I have figured it out, everything changes.
ALS is “our disease”; it affects me and our children, and all of those close to us — not just Augie. We’ve chosen to live it very publicly. To do so, we’ve allowed others to share our burden — we ask for and accept help from others. This help is the source of many of our greatest gifts. Our time since the “worst day of our lives” has been filled with the best, most meaningful days of our lives.
Because you’ve chosen to care for someone with ALS, it’s also “your disease.” I wish for you strength, humor, compassion and patience. But most of all, I wish for you the wisdom to recognize the gifts of caregiving that arise every day along the way.
Corona del Mar, Calif.
MDA ALS Division Co-Chair