Living With

I’m proud to know Mike & Cheryl Belleville.

Their friendship touches me in a deep and meaningful way, the way we often don’t find on life’s journey. After seeing their new video this week I’m reminded of a blog I wrote two years ago when I first met Mike & Cheryl:

I joined 1300 other passionate people in search of answers for dementia and Alzheimer’s disease in Washington, DC. We were intent on painting Capitol Hill purple to build awareness and support in each and every corner of the city.

It wasn’t on the hill that I had my epiphany; it was in a large remote meeting room where Richard Lui of MSNBC interviewed two people. One was a caregiver who lost her mother after a difficult battle with young-onset Alzheimer’s. The other was Mike Belleville. Mike was diagnosed at the age of 52 with early-onset Alzheimer’s, but in time his diagnosis changed to Lewy-Body. This is the form of Alzheimer’s that took Robin Williams from us – and it’s one of the toughest forms of the disease.

I was far enough from the stage to see him only on the jumbo screen but I felt an immediate, deep and personal connection to Mike and his wife Cheryl.

Here’s a man, younger than me, living with the disease. A man brave enough to share his life with us, unfiltered. Mike talked about the deep depression he suffered at diagnosis and the strength Cheryl gave him. Together they broke through emotional paralysis to become advocates for those living with the disease and those caring for a loved one.

When the session ended I stood in the hallway waiting for others in my group. Mike and Cheryl walked toward me hand in hand. My usually reserved demeanor went out the window. I walked up to Mike, a fairly robust man and I hugged him hard. Through my sobs I told him how much his talk meant to me. We shed a tear together for our shared journey through dementia. We were partners in this dance for just a moment.

The most powerful and moving description of Mike and Cheryl’s advocacy can be found in Elizabeth Warren’s new book, This Fight is Our Fight.

Upon meeting Senator Warren for the first time Mike said, “ Hi Senator. I’m Mike and I have early onset Alzheimer’s disease. Soon I will have forgotten this conversation. I will have forgotten everything. You. My children. My wife. Everything I know will be taken from me. Please, I’m going to forget. So I need you to remember.”

Through my friendship with Mike and Cheryl I’m reminded that each moment in this disease is not like any other. As caregivers and those living with the illness, we must recognize and respect each other.

Those diagnosed with dementia and Alzheimer’s disease live with a cruel knowledge of how the disease will inevitably rob them of memory, love and life. But diagnosis is not end-stage, there are many days filled with vibrancy and fulfillment according to Mike. Just listen to him talk. Just watch him live life.

We need more Mike Bellevilles who have the courage to commit to advocacy and the strength to rise above a diagnosis. He gives hope to others and equips them with tools to cope with their loss. . Mike and those with the disease who advocate “out loud” are angels who walk among us. Driven by a sense of urgency, their advocacy must be underscored by the ticking of a clock much more resonant than the rest of us are able to hear.

Caregivers stand witness to the ravages of the disease through all the stages and for someone we love deeply, as Cheryl does for Mike. Human nature often drives us to focus on the worst we’ve seen, the most debilitating side of any experience. Caregivers focus there because this disease has stolen something very precious from us and we can’t fight back any other way.

It may be time to change our focus, to ask caregivers to rise beyond their grief in the same way we see Mike rise beyond his Lewy-Body diagnosis.

I’ll carry my mother’s story forever on my lips and the pain of caring for her forever in my heart. But caregivers and those living with are not two separate camps in a battle with dementia; instead we are two collaborative forces whose united power can overcome many obstacles and aid so many in their journey.

Thank you Mike and Cheryl, my commitment is evolving.

After seeing Mike & Cheryl’s video this week, as Dr. Seuss said, “my small heart grew three sizes,” and I find strength to be a better advocate to end Alzheimer’s.

Thank you once again Mike and Cheryl, my commitment continues to evolve.

 

Lisa B. Capp is a writer, activist and dementia caregiving survivor. She serves on the Alzheimer’s Association Leadership Board for the Desert Southwest, is a member of the Alzheimer’s Impact Movement (AIM) and AlzAuthors.
As a High Tech Change Consultant, Lisa worked with leaders of global business, governments and non-profit organizations around the globe. Her passion now is focused on empowering dementia caregivers to survive their journey with grace.  
Join Lisa in a conversation about grace on Twitter @lisabcapp and LinkedIn at LisaBCapp.