September 30th 2011
I just brewed a cup of decaf and tucked my kids into bed. Friday night isn’t necessarily the best time to publish a blog in the social media standpoint, but this one I want to get out into cyberspace as soon as possible. I know it’s longer than usual, but trust me, it’s worth your time to read this story.
This blog, for me, is going to be a difficult one to write because I’m not a writer, I’m a photographer. That said, the difficulty that I am experiencing trying to put my feelings into words doesn’t even come close to the difficulty that this woman, Michele, deals with on a daily basis.
I met Michele a few years ago when our children were in Pre-K together at the Methodist School here in Winter Park. I had seen her around and recognized her from other places like spin classes at the Y, children’s birthday parties, karate classes and so on, but had never gotten to know her. I always marveled at how beautiful she is, not only on the outside, but could see the beauty in her soul radiating outward through her smile.
I can only imagine that this is what Jeff fell in love with when he met his future wife; a beauty that radiated in a way that his soul was meant to be matched with hers. I have heard from others that their marriage is one of a kind, that they are true soul mates, best friends on a quest to raise their three children in this world, together, with God by their side. With all of the talk about the increase of divorce rates, hearing about a marriage like that is truly exceptional.
A few months ago I asked for nominations of families who have had a difficult year, whether it be a financial reason, an illness, a tragedy, etc. I wanted to gift a session to a family that otherwise wouldn’t be investing in professional photography to capture family moments. Those entries were very hard to read, difficult for me to get through reading without wanting to just give in and gift them all a session, but I knew I had to only pick one.
My friend Jamie nominated Michele and Jeff. Although I had seen Michele around town as a casual acquaintance, I had not known that Jeff had been diagnosed with Frontotemporal Dementia (FTD). It is a terminal disease of the brain that slowly takes away his personality and motor skills until he passes away. I really didn’t understand what all of it meant when I read the nomination and knew I had to talk with Michele further about what she wanted to do with the session. I didn’t know if it would be a family session or maybe just the kids and Michele, I had no idea.
Michele and I exchanged emails once Jamie had notified her of the gift. She was surprised and grateful but also leery that Jeff wouldn’t be a good candidate for the photo session. This is part of the email she sent me:
“Jeff doesn’t ‘interact’ really. He can only follow simple instructions (sit here, stand here). His behavior is spontaneous and self-centered (in the way a child is, what his needs are is what we must do…). When we do gather as a family, there needs to be someone present — and Jeff often steps back and locks his hands behind his back and just stands there, watching.
Now, when Jeff and I are together, it is good. I can often engage him in a way that we interact in simple terms. I can make him giggle and when I turn on certain songs in the car his face lights up. These are the beautiful moments and visions in the midst of such tragic loss that inspire me and make me still very much in love with him. Even as I write this I am smiling really big, but I have tears at the same time.
The pictures I’d like to capture the most of are Jeff and me. I imagine when the kids are grown, they will have lots of questions about this awful time… and I want them to see the love they came from.”
The next time I saw Michele was at a spin class. After it was over I had gone to do my stretching on the mat and she came over to join me. This is one of, and will remain, one of my favorite memories of Michele. We were lying there on our backs looking at each other and she was explaining to me, with tears in her eyes, how much this man means to her. She was telling me about FTD and how people with the disease could get violent suddenly because they have no control over what they are doing. Fully expecting to have to deal with this during the session, I asked if there was a chance that Jeff could do that when we would be shooting and she replied, “No. He doesn’t do that because this man has no hate. He has no anger inside him.” I was blown away by that. We continued to talk about the disease, about Jeff, about what to do with this project. It was then that we decided that we would take this opportunity to photograph their love, without the kids, to have something to show the kids when they are old enough to understand what the word love really means.
I asked Michele if she would like to write something for my blog about how Jeff’s disease if affecting her life. When we met so I could show her the images, she told me that she deals with what is going on by believing that what is happening to her is not her story to tell. It’s God’s Story. This is what she wrote:
“I am stunned that Meredith captured with her lens how I feel about this man. Jeff’s Frontotemporal Dementia has stolen his ability to dress, eat, bathe, toilet, think and speak– but nothing can take his Light and Love. Although disease and dying is happening to us, that is not our story. Because we are living God’s Story, we know not just life AND death, but also Life IN death. By the grace and power of God, ours will forever be A Love Story. Thank you Jamie and Daniel Cochran for nominating us and thank you, Meredith, for sharing your gift of photography with a phenomenal depth of presence and Spirit.”
Thank you, Michele, for allowing me to capture these moments for you. Thank you for letting me into your world, showing me the love you and Jeff share and for helping me tell God’s Story. You are a phenomenal woman whose strength and faith is truly inspiring.
Song credit: “Come Around” by Tyler Stenson