Have you ever felt like you are just moments away from an experience which truly changes your life? Ever since I met Phil and Debbie this is how I have felt.
I was shooting a wedding a couple weeks ago and as an official people watcher (aka photographer) I observed pretty much everyone in attendance. There was one couple who stood out to me. I quietly watched them from a distance. Their love for one another was written on their faces. The way the man cared for his wife appeared so genuine. They went out to the dance floor for the married couples dance. The only thing different about them versus the other couples was she was in a wheelchair. It didn’t bother her husband. He was so proud to be dancing with his wife.
As I sat down to eat my meal, I was thinking about this couple. I wanted to meet them. I stood up and went to where the man was standing.
I stuck out my hand and said,
“Hi, my name is Danielle Fox, I’m one of the photographers here at the wedding. I just wanted to tell you I have been watching you with your wife. The most beautiful thing that I have seen at this wedding is the love that you have for her.”
“Oh, thank you. Do you know what Lou Gehrigs disease is?” he asked.
“I do.” I said.
“She’s dying.” He began to cry and then walked away.
I felt so sad for him. I sat down to finish my meal. While I was there I realized their story must be told and soon. I would offer to tell their story. I couldn’t think of anything more significant that I could do for them. He regained his composure and walked back towards me.
“I’m sorry, it’s just so hard.” He told me. We were supposed to retire and travel together. Now she is sick. She’s completely paralyzed from the neck down and once the disease gets to her diaphragm thats it.”
“Please don’t be sorry. I am so sorry. She is beautiful. I can’t believe how happy she looks. Her smile is so bright.” I reassured him.
We talked for a just a bit longer and that is when I told him that I am a photographer and I would love the opportunity to record the love I have observed between them. I wrote down my info on a random scrap of paper and gave it to him. He told me his name was Phil and he introduced me to Debbie. Phil said he would want pictures if Debbie did, whatever Debbie wants. I went up to meet her, a little nervous because her speech is nearly gone and I knew it would be hard to discern what she was saying. I wanted to understand her so badly. I told her about how beautiful she was. About how I had seen the love between her and Phil.
“I want to tell you story… if you would like that.”
She said something back and I looked at Phil.
“She would like that. ” He said. “We’ll call you.”
A week went by and I didn’t hear anything. I was thinking about how stupid it was that I didn’t get their info, what if he had lost mine? Sure enough a few days later I checked my voicemail and there was a message from Phil. I was so excited.
Last Friday I spent the afternoon and evening with Phil and Debbie. I sat in their living room and listened as they recounted their life story. This time I could understand Debbie for the most part. Ocassionaly I would look to Phil for clarity. They were really real people… real about the struggles of dealing with this disease, real about the hardships, real about the nearness of Debbie’s death.
Phil happily told me of how amazing Debbie was as a wife, mother and friend. Everyone loves Debbie. She is incredibly talented, capable and thrifty. She loved the outdoors and was incredibly fit. They hiked all over together. They lived off the land in their early years and raised two sons together. They were really happy. Debbie told him he was exaggerating.
“We lived off laughter.” Phil said. “That’s why it’s just so hard now. We didn’t expect things to end this way.”
After a good long visit we began to discuss a vision for this project. I’ve never done anything like it before and Phil and Debbie certainly have never been faced with something like this before. They want it for their grandchildren of whom they have five.
“She would have done so much with them. We want them to be able to remember her fight and who she is. But, I don’t want it to all be rosy, you know. Real. We cry sometimes. Debbie breaks down. This is really hard. I want all of it remembered.”
“I can do that. ” I promised.
From there Phil took Debbie through a routine of her care. She can no longer eat so he fed her through her feeding tube. She had a breathing treatment. She went on her machine to give her diaphragm relief. She had a smoke. And the best part: We took a ride in the golf cart to the lake. We debated whether to take the van or the cart. I voted cart.
“You’ll have to hold my hand if we go in the cart.” Debbie warned me.
“I’d love to hold your hand, Debbie.” I told her.
We brought along Louie, too. He’s black and furry. A friend gave him to Phil when Debbie was diagnosed and told them they would need Louie. Phil really likes his dog.
Off we went just before sunset, the four of us in the little golf cart. I sat squished up next to Debbie with the wind blowing my hair. I couldn’t believe this all was happening. I felt right at home with Phil and Debbie and Louie. I couldn’t believe that I was chosen to be part of an experience that I knew would change my life forever.
“I love her more now than I ever have.” Phil told me during our visit. “I just love taking care of her.”
by Danielle
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