OUR JOURNEY – Dance with Me

I was pushing buttons on my phone a few months ago, trying to get to the calculator, when suddenly my phone started playing Ben Harper’s song, In the Colors. I stopped and listened as Ben sang, “come dance with me …”

I really love that song and remember the first time I heard it early in this journey that I am on with Barry. It played while I drove to a PTA convention here in Minnesota. At the time, I was doing everything I could to be proactive in my life and work because I was starting to realize that we would have to sell our house soon or be in deep trouble. When I heard that song that day, I was stunned at how much I loved it. After I returned home from the convention, I told Barry about the song on the radio. He promptly bought it on iTunes for me. Barry loved filling our iPod.

As I look back, I think his frontotemporal dementia (FTD) began during his music-buying days. After every Glee episode on TV, he would buy the entire soundtrack. I liked Glee, but I didn’t really need the sound track from every show.

Shutting out music

When Barry was first diagnosed and I was working hard to get back on my feet, I took music out of my life. Music made me feel too sad. Every song I heard brought up a memory or a feeling I did not want to deal with. So talk radio and MPR kept me distracted and kept the memories away for a couple of years.

I remember the day about a year ago when I let music back in. I was in the car and turned on the KQ Morning Show. One of my favorite songs was playing — Pride and Joy by Stevie Ray Vaughan. I turned up the volume and sang as loud as I could. It felt good, and I realized the song made me feel kind of like the old me again!

Later when Ben Harper’s wonderful song serendipitously played on my phone, it made me think about how much Barry and I loved dancing. Were we good dancers? No! Were we irritating dancers? Yes!  Barry had one famous move where he would jump off the stage or stand on a chair or table in the crowd and start dancing. This was odd, but we always got a kick out of it. Were we dancers that young people saw and pitied? Yes, but we had so much fun that we didn’t care what others thought!

Dance the night away

When a song we liked started playing, Barry would give me a nod, and we would hit the dance floor. The only move I have is called four corners. I practiced it with my friend Jeanne every Saturday morning while watching American Bandstand as a teen. I really mastered it and was voted best dancer in 9th grade. But it’s all I got. Barry had a mix of hippy moves, as well as one move called the hitchhiker. We didn’t care at all how bad we were, we just loved to dance together. At a few weddings, we were the last to leave the dance floor. We could out-dance the young people!

But those days are over. The last wedding where we danced together was for a friend of our daughter Kelly. Barry had begun to change by then, and I was pretty irritated with him that night. We danced together a bit, but I mostly danced with Kelly’s friends that night.

We haven’t danced since and never will again — at least not together. I have lost my dance partner forever to FTD. It took me a long time to let music back in, but it feels good now to hear favorite songs and remember all the fun we had.

When I listen to the iPod these days and hear all the Glee music and other songs Barry downloaded, I realize that it is okay to remember the good times. I also realize how much I missed music in my life. Welcome back!