TRANSCRIPT
About 10 years ago, my family moved back to my hometown in South Georgia. I didn't really want to go back to my hometown, but that's a different story.
My husband, Nathan, had taken a job in my small South Georgia town. It was our seventh interstate move in nine years. Every opportunity he had, he took. We were ambitious.
It was a fall day. We were playing in the front yard with my kids. They were nine, six and three. I had taken a break from my career to manage the moves and to manage those kids.
In this moment, I was picking up pine cones. The kids are playing with my husband. I take a break. I was enjoying the laughter, the kicking of the balls and picking up my pine cones, but I saw something that I didn't really want to see. I pretended like it wasn't there.
My husband kicks a ball and he and my three‑year‑old run after it. The three‑year‑old beats him. He was ecstatic he beat Daddy.
My heart sank. Nathan looked at me and said, “I feel like I'm running through mud.” My strong, 30‑year‑old husband outbeat by a three‑year‑old. It was the day when we had to face that reality we'd been running from.
We went to put the kids in bed that night and we pull out this manila envelope labeled IBMPFD, inclusion body myopathy, Paget disease of the bone, frontotemporal dementia. That alphabet soup of letters that we never could really remember. We pull out a newsletter that we'd received years ago. There was this picture of scientists smiling on the front. They had discovered the gene, the family curse.
You see, his family had participated in research years ago. His mom, his aunt, his uncle and his uncle, all perfect in their childhood, no problems. In their mid‑30s or 40s, they started having trouble walking.
So we look at it and we see that gene, VCP, valosin‑containing protein. His mom had lost the use of her hands. She couldn't hold her grandchildren. Were we ready to find out? It would kill her. That was her thing. She was holding onto hope that she didn't pass on this gene to her kids or her grandkids, so we folded it and put it away.
A couple months later after she passed away, Nathan pulls it out. “I'm ready to find out.” He emails the geneticist. “Hey, can you test me for the VCP gene?”
She mailed him a kit, a blood test. He mailed it back.
We get that call two months later. It was evening. He walked from the kitchen to the bedroom. I followed him, waiting. It was a short phone call. He nodded his head. “Okay, okay.” He hung up the phone.
“I have it. I've been waiting.”
“Okay. I'm going to be the supportive spouse. What are we going to do? Who are we going to tell?”
“We're going to tell no one.”
“What? No one?”
“We're fixers. We solve problems.”
“You're not going to fix it?”
“No. This is my body. It's happening to me. And what good would telling people about my disease do? Nobody can do anything.”
He slept like a baby that night. I went into the closet and cried.
We face problems. We fix things. Here, faced with the biggest thing that we’d ever faced and we're not going to fix it? Not only that, it's autosomal dominant so it could pass to my kids.
We woke up the next morning and he went to work. I put a smile on my face.
I kept his secret for two years. How could we tell our kids if we weren't okay with it? That limp that he walked with, that was an old sports injury. The family trip, the family Cub Scout camping trip, he couldn't go because he was afraid to hike the half mile from the parking lot to the campsite. So, I took the three kids by myself, pitched the tent, cooked food over the open campfire and it was good, but I had this nagging feeling in my heart that Nathan wanted to be there and there was nothing I could do about it.
About two years later almost to the day, we get an email from the geneticist. She had found a VCP inhibitor that could potentially work for his gene mutation. This world of a researcher reaching out to us? It was crazy. People were working on this?
We called a friend. Her name was Alice. She had some weird kiddos and she said, “Alison, you need to start a patient advocacy organization.”
“What's that?”
“Well, you know, you fund research, you organize patients.”
“Oh, that sounds like a lot of work. I can't do that. I'm busy.”
“Oh, no. You can, and you will. Because if you don't advocate for your disease, nobody else will.”
So, I look back at me in my closet with my heart walled off, not being able to function, and now, there's a way to fix it. Or maybe not even fix it, but maybe take a step in the right direction. At least I have a path. It's not a straight path. It's not an easy path, but at least it's a path.
And at least when I look at my kids and tuck them in at night, they look at me and say, “Am I going to inherit my father's disease?” I can say, “Not if I have anything to do about it.”
Thank you.