If you've met and spent time around my dad, John Fine, or heard me talk about him, you already know—my sisters and I are lucky to have one of the good ones.
He's generous with his time and talents, unconditionally accepting, and quick to smile and laugh. He taught me and my sisters what it means to work hard: that you should run—not walk—to fetch a tool when asked, and that as girls we have every right to own and operate power tools. Now he's teaching us what it looks like to fight an unseen enemy, one on a steady march to steal his life: Amyotrophic Lateral Sclerosis. Otherwise known as ALS, or Lou Gehrig's Disease.
It's a fatal motor neuron disease that will slowly rob him of his ability to drive, walk, talk, and eventually, breathe. The average life expectancy after diagnosis is 2 to 5 years. There is no cure. The two medications approved to treat it are so flawed that not a single doctor we've met (and we've been to Mayo Clinic) has recommended them. This disease is horrible and awful and now it's a part of our lives.
I love someone with ALS. He'll be taken from us sooner than later. Until then, we're living every day to its fullest, as best we can. We're planning vacations and family photo shoots and end-of-life care all at the same time. We're trying to have no regrets about words unsaid. We're having tough conversations about life and money and trying hard not to fight over who gets to spend time with him. Time is our enemy. Life hasn't stopped, but we're running out of time anyway. I'm coming to terms with the fact that my amazing father won't see my children (or his other 4 grandchildren) graduate high school or college, marry, or have children of their own.
We all feel powerless. But one thing I *can* do is advocate on behalf of the 15,000 ALS patients in this country. The Ice Bucket Challenge made a dent in ALS funding, but there's still so far to go to find a cure, and discover what's causing this disease. I'm organizing a team for the September 2019 ALS Walk in Cedar Rapids, Iowa. If you can, please donate to One Fine Team, or better yet, come walk with us to show your support.