The words rang out like a gunshot. “Jim, I’m sorry to have to say this, but you won’t ever see him again.”
I was having lunch not too long ago with the brother of a good friend. Last spring, my friend got word he had ALS. This was a guy as vibrant as anyone I knew, avid golfer and successful businessman, exceptionally bright and witty with a hint – okay more than a hint – of that dry sarcasm that I love. He had boundless energy and a real affinity for people.
ALS hit him quickly and it hit him hard. He played golf a few times last summer as his strength ebbed, showed up at the club a couple of times to say hello despite his speech beginning to slur. He tried to do as many of the things he loved to do because he knew he didn’t have long.
He’s now in hospice, not even a year later, with virtually no mobility, watching the clock tick down. His mind is sharp, of course, but as ALS does to its victims, he is a prisoner in his own body. And there is absolutely nothing he or anyone can do.
Such is the scourge of ALS. Its medical name is Amyotrophic Lateral Sclerosis, also known as “Lou Gehrig’s disease” because the iconic baseball player was the first celebrity to acknowledge having been stricken. Most people succumb within a year or two. And that year or two is brutal, as everything in the body shuts down, slowly and methodically. Except the mind. The person knows precisely what’s going on.
But there is hope. Which brings me to my favorite event of the year, this Saturday’s Evening of Hope at the Hyatt Regency. If you recall my column a year ago at this time (A Real Evening of Hope), the Evening of Hope is the primary annual fundraiser of the ALS Association Wisconsin Chapter. They’ve put on this event for 20 years now to raise funds for ALS research.
Jeff Kaufman, a vibrant Milwaukee lawyer, started the Evening of Hope not long after he began to experience the ravages of this horrific disease in the late 1980’s.
Jeff was a person of such strength that he lived with ALS for 20 years after being diagnosed. True, he was on a ventilator and totally dependent on his wife Jan during most of that time, but few humans could have withstood the horrors of such an existence.
Sometimes it’s hard to remember the real reason for this grand evening. It is lavish and opulent, in fact it’s the only opportunity I get each year to wear my tux. And I love wearing my tux. The ladies wear the most gorgeous dresses, the grand ballroom is as beautiful as any five-star restaurant, and the food and drink is top-notch and plentiful.
My favorite part of the evening is the silent auction, where I get an opportunity to add to the inventory of the Palmer Cellars, usually in a wild bidding war with a rather determined gentleman. There is also an incredible live auction, which raises an unbelievable amount of money. In addition to spectacular island vacations, the featured raffle item is usually a puppy which is guaranteed to bring in at least $5,000. Where else could you find someone willing to part with five grand for a shih tzu?
But there is a strong reality to the evening. To have a friend, someone whom I was fortunate enough to know and appreciate, stricken down so quickly and so forcefully is a cruel reminder of why we’re going Saturday night.
I’d never known anyone personally who got ALS until my friend was diagnosed last year. It makes you realize how precious life is, in particular how blessed you are to simply be able to walk and talk and smile and do the things we take for granted.
Prior to the aforementioned lunch, my friend asked his brother to “make sure you give a hug to my buddy.” That really struck me. ALS is taking too many people, and eliminating too many priceless hugs.
This year, if you have room for another worthy cause in your list of charitable contributions, consider this one. You can find all the information on the ALS-Wisconsin chapter’s web site, here.
So remember to give someone you care about a hug whenever you can, and, even more, remember… there is hope.
