The toll of illness can take so much out of us if we do it alone. When Porter was young, before Ramona came into our life, I was drawn to other mothers as my lifeline. I still am.
From A Bad Reaction:
Snowy December days are the most difficult. Porter is hyperactive and I am tired. I take him to an indoor park, near our home in Minnesota, hoping he will burn off his energy. I’m hoping it will burn off without his neurons firing randomly. As I watch him play I sit by a woman and a boy in a wheelchair. Her child is strapped into the seat but still tilting to the side. I ask her about him and we start to talk. We cut right to the chase. We know the secret twin language you share with other parents like this.
“He was born with a number of things wrong with him and weighed only 20 pounds at age two. He can’t eat so he has a feeding tube.” I look at her boy. He is slumped in a chair with just one eye open.
“Can he talk?” I ask.
“No. Sometimes he blinks to communicate.”
This makes me think of what I’ve read of Jean-Dominique Bauby. He was the editor of Elle magazine until a massive stroke at the age of 43 severed his brain stem from his spinal column. Following a three-week coma, he awoke paralyzed and mute, though his mind was untouched. His “locked-in syndrome,” was described in his memoir, transcribed by a friend that translated eye blinks to letters in the alphabet. Porter can blink, but he’s not transcribing a book.
The woman wants to know about Porter. He is squealing as he pours sand between buckets. I tell her about his brain damage. Then I tell her all of the things he loves, like blowing bubbles, and his sister, and the sound of the vacuum as it whirs over the carpet. The other mother and I sit and watch. We watch without saying anything.
When I get home from the park, I call my mom and tell her about the woman’s son. How he can’t sit up or talk or eat—just blink that one eye.
“It really puts things in perspective about Porter,” I say.
The mother I met stays in my thoughts. She looks haggard. I can see in her what people see in me and know why they ask me if I am tired. They aren’t imagining this. Research has shown the link between psychological stress and biological age and the role cell division plays. Researchers found that blood cells from female caregivers of disabled children appeared to be ten years older than those of a matched cohort who did not have disabled children. The scientists evaluated the DNA of white blood cells as these play a key role in immunity. They zeroed in on the telomere which is the dangly end of every cell’s chromosomes. Cells routinely divide and replicate themselves and the telomere shortens each time and mirrors our biological again. This division is natural as we grow up or fight infection and the wispy tail is rebuilt by a natural chemical called telomerase. After a certain number of these events the telomere eventually wears out and at that point our cells can’t recreate themselves.
When the doctors compared the DNA of the caregivers and controls they found that the longer women cared for disabled children the shorter their telomeres. The chemical change agent telomerase was well below what is considered normal for women their age. The chronic effects of caring for these children were accelerating their aging in a biological sense.
My telomeres become stubby when I am alone. The stress of Porter’s issues isolated me at first until I learned the language to talk about what was happening. His struggles gave me new nouns and new verbs. They created a way to connect with other people in all the rawness and realness that real life contains when we are honest. We meet in the space between us where only God and love exist.
This is an excerpt from the memoir “A Bad Reaction” (Skyhorse Publishing) by Dr. Sarah Bridges. To read more, please buy the book available on Amazon.com. For more “Free Range Lives” messages, click and subscribe to the blog. We appreciate your support and your “shares” as we create a community of support and hope.