Mike Belleville was diagnosed with younger-onset Alzheimer’s disease in 2013 at age 52. He candidly recounted sitting in the doctor’s office with his wife Cheryl, feeling overwhelmed and scared. Mike described the deep sadness and depression that immediately followed.
For Mike, building up the courage to join a group of other individuals with dementia has been the most important step he’s taken. Initially there was relief and camaraderie knowing he was not alone. Then solace and understanding came from sharing experiences within the group. To illustrate his determination and unwavering spirit, Mike uses his favorite quote from Stephen King’s “Shawshank Redemption.” The main character Andy turns to his friend Red and says, “I guess it comes down to a simple choice, really. Get busy living or get busy dying.”
Today, Mike is a sought-after dementia advocate and speaker. He has given hope and courage to thousands of people with dementia and their families. He’s done work with the Alzheimer’s Association, Dementia Action Alliance, and Dementia Alliance International, among others.
Mike told me, “The biggest thing for me is stigma. It’s because of what people think or what they anticipate. What they “see” as dementia. The public narrative is tragedy.
As soon as you get a diagnosis you are automatically put in this pool as a person who is not capable of anything anymore. It’s automatic. It’s like pow! You are in this bucket now. You’re no longer capable of making decisions for yourself. You’re no longer capable of participating. You’re no longer able to contribute to society. You can’t learn anything new anymore. There are all these things that you can’t do anymore. It makes me very frustrated and angry.
When the neurologist sat me down. He explained what the test results showed. He said, “We’re pretty sure you have younger-onset Alzheimer’s. I’m going to start you on this medication. I’ll see you in 6 months.” And he walked out the door. That was it. No referral to support groups. No ‘here’s what you can expect next.’ Nothing. If you’re given a cancer diagnosis, it’s the first thing they tell you! You’re plugged into these networks of help and support. For the majority of people with dementia, you get nothing. What is it about this disease?
This needs to be talked about. In the elevator. In schools. In the line at the grocery store. At the family dinner table. It needs to be talked about. No more hiding it in the back room.
In the past this was taboo and scary. You know? And all the words that go with it ‘demented’, ‘senile’, all that stuff. Today there are a lot of us out there trying to say no. It’s no wonder people don’t want to talk about it. They are being ostracized. Judged. Assumed to be not capable. And it’s no wonder because of what people see in the media. I say don’t pigeon hole me. Don’t automatically assume I can’t do something.
When I was diagnosed, the doctors told my wife I would be in a nursing home in 3-5 years. That was 6 years ago. My point is – from point A to point B what are you going to do with your life? You can choose to just sit there and let it run it’s course or you can choose to do something. Still live a good, meaningful life. For me, it’s to show people that you can still learn. You can still contribute. You can still be part of society. And that we deserve, and have a right, to be part of that.”
I asked Mike what he hopes his advocacy work will accomplish and he told me, “I want people to understand that you can still live a meaningful, purposeful life with what time you have. Don’t believe the narrative that life is over. I want my voice to help get people to treat us the same as they did before we got the diagnosis. We may change some, but we are the same people. TALK TO US! WE ARE STILL HERE!”
Mike quoted Shawshank Redemption once more, “Get busy living or get busy dying.” And then added, “Make a choice. Yes, you have this – but it doesn’t end tomorrow.”