Cane and Able Stroke Recovery Group

Different, But the Same

The author recognizes that his wife changed after her stroke, but her character persists, and that's what matters.

by John M. Epsy

My wife, Pam, had a craniotomy to remove a meningioma [a tumor in the membranes of the brain and spinal cord] in 2010 when she was 53. The surgeon removed the entire tumor, but that night Pam had a brain bleed. When she awoke from a coma three days later, she couldn't speak or see clearly and could barely move her right arm and leg. She also didn't remember me.

Rehabilitation helped, but some symptoms remain to this day. She periodically has seizures, which sometimes land her in the emergency department; if she's disoriented there, she will be admitted to the hospital overnight. Because Pam also has impaired peripheral vision and difficulty understanding language and finding her words (mixed aphasia), I stay with her until she's settled in a room and I can share her history with the night nurse.

One evening, the night nurse proved to be an irritable man whose every gesture exuded deep sadness. After some time, he told me that his wife had also had a stroke. "One thing's for sure," he said. "She isn't the woman I married."

Pam and I hear that a lot. Once, in a store, we met a sales associate who wouldn't speak to or even look at Pam. Her difficulties with mobility, and especially with language, appeared to upset him. As he grew more agitated, I took him aside, and he confided that his wife also was recovering from a stroke. Another time, a dear friend of my parents—a woman who cared for her husband after his stroke—said at his funeral, "He wasn't himself anymore."

In a memoir I read recently, the author laments that the man who woke up from a stroke is not her husband—she misses his mind, his wit, their shorthand phrases, and a host of intangibles. Yet he protests: "I still feel like myself."

Stroke and brain injury can come with grievous losses. Some memories are gone; some activities will never be resumed. Pam used to work in a doctor's office, volunteer at our hospital, and cook for the homeless. She also managed our finances. Today she can no longer read nor assist in leading worship at church. She has lost friendships that were rooted in shared experiences. Some of her days—our days—are spent grieving those losses.

And yet…she is not diminished. Not a bit. She is still here. Still herself. Still good company. Her spirit shines as brightly as ever. My life would be so much poorer without her at my side.

Character persists. Indeed, when much is stripped away, character is clarified, and hers is splendid. Pam's words often misfire, she speaks without "filters," and her anger is "disinhibited," but she was never one to color inside the lines. She still likes to pray both at home and in church, but she sometimes does it without words. She has made new acquaintances, and occasionally a friend. She achieves breakthroughs, as on the memorable day when all her swear words came back to her.

Often her very vulnerability is a key that unlocks others' hearts and lays bare their character. I also saw this, flickeringly, as my mother slipped away into dementia.

I know that I am one of the lucky ones. Pam is still Pam, in all her singing, cursing, zany, demanding complexity. As she said when we came home from rehabilitation, "It's so nice not to be normal again."

I can speak only for myself; I am ill-equipped to enter into another's experience. Yet to all those who feel cheated and bereft, I want to say, "Look deeper. Peer past your expectations and cherished memories. The normal, or all that went before, is not the best. Something is stirring."

John M. Espy is an instructional writer who lives in Kansas. His memoir, Irrevocable: A Story of Human Aphasia and Divine Grace, has just been published by Deep River Books. He blogs at Bible Weigh Station.

This article was reprinted with permission from Brain and Life: Neurologu for Everyday Living,