What were you doing on November 7th, 1991? I was a junior in college, floating through that early 20s daze that was equally split between what is my life’s journey going to be and what are my friends up to that weekend.
But this day was monumentally different. It was the day Magic Johnson had a press conference in Los Angeles, and he calmly stated these 18 words that ultimately wound up shattering a lot of realities and perceptions….“Because of the HIV virus that I have attained, I will have to retire from the Lakers. Today.”
I’m a big Laker fan, so in the spirit of full disclosure I have to admit that a lot of my “devastation” had more to do with how this would impact the Laker’s fast break more than the personal ordeal Earvin Johnson was going through. I ignorantly thought, like thousands of others, that this revelation from Magic meant he was soon to be on his deathbed that his life was over. The stories about AIDS those days were all of devastation, the shame, the perception, and the pictures of frail men with hollow eyes knocking on death’s doorstep.
Thankfully we were all wrong and perceptions change. The reality of AIDS was and is still real, but there was more to the story than the death sentence. The narrative has thankfully changed.
Fast forward 27 years later. Two gentlemen, Brian LeBlanc and Mike Belleville, hung out with me and some friends in Denver. It was four days of fun and frivolousness, we were eating out, eating in (Mike is as good a cook as anyone I’ve ever known!), wine, whiskey and beer tasting. We played croquet, climbed Red Rocks, hung at Estes Park, ateRocky Mountain Oysters, and listened to jazz at the Brown Palace etc.
What’s notable: Both of these guys are both living with dementia!
This whole journey, or should I say adventure, started a year ago when I heard Brian (and my buddy Robert Bowles) speak at the Dementia Action Alliance conference in Atlanta. Karen Love, executive director of the DAA and long-term friend of mine, fervently believes the ‘true experts’ of dementia as those individuals and families living with symptoms and that THEIR voices are the ones that should be heard.
I think of myself as somewhat of an out-of-the box thinker when it comes to aging and senior living, but Brian was seemingly talking to me personally when he talked about the demeaning way people approach him (or ignore him) when they learn he has dementia.
I was that guy, unintentionally condescending, probably exuding pity, doing everything but making him feel simply like a person dealing with a disease. That night I heard him speak, I consciously went out of my way to treat him like anyone else I know. I spoke to him that night with my usual mix of sarcasm and banter, and we hit it off instantly. I told bad jokes, gave him some grief about his clothes, we were just two guys giving each other crap. And we both think we’re a lot funnier than we really are!
I’m usually not one for reflection, but that night it hit me that there are millions of people out there like me, thinking of dementia in as negatively of a stereotype as possible. All of the horrible, helpless images that come to mind when thinking about the disease. Virtually every story you read or see, often times in a fund-raising contexts, focuses on the helpless, painful images of the disease, and the sense of hopelessness that comes with it.
That is absolutely a huge part of the reality and I do not want to diminish it. But it is not the WHOLE story. The Magic Johnson analogy popped in my head and I started thinking what we at iN2L could do, in our own small way, to change the perception.
An idea popped up to shoot a video, a light-hearted video just seeing these guys living their life for a few days. No pity, no looking for donations, nothing negative, just showing people living their life to the fullest. I floated the idea both to Brian and to Karen, they were all over it, so there we were. So last week in Denver a group of us made this story come to life.
It was a zest-filled weekend touring through Denver. We were the Traveling Wilburys with Zack Mejias, our extraordinary iN2L videographer, in tow. There were some times when the disease would come alive for our stars, but they were revived through companionship and engagement. We visited tourist spots, had a robust day at the iN2L headquarters talking technology and dementia. We had a hell of a good time.
There is a huge reality to dementia that is brutal. But there is a perspective to be had in between these two extremes, and if our video errs a bit on the positive side so be it, there is plenty of fodder out there focusing exclusively on the negative.
Who knows how the video will turn out, but our intention is to “release” it at the DAA conference in Atlanta this summer. Maybe thousands of people will see it, maybe just a few hundred. But the journey for me is all worth it.
The next time you find out someone you know has been diagnosed with dementia just be real with them (as Brian taught me). Ask questions, listen, don’t pity them. Treat them as you would have the day before when you didn’t know they had the disease. It’s never too late to change your own stereotypes and perceptions, these men did it to me!
Jack York is the president and co-founder of It’s Never 2 Late® (iN2L).