Diagnosis day

And how that led to this

Many writers have observed that they know best what they think when they read what they write. That is true for me.

Figuring out what I think about the changes that have come into our lives with my husband’s rare dementia lures me back to my keyboard, week after week. Mining for truth worth sharing—hoping to comfort myself and others—has given me newfound purpose. I have my husband to thank for this; the day we got his diagnosis marked an ending in one way, but a beginning in another.

We were up early that day. Our youngest daughter, Jenna, had spent the night to attend the neurologist’s appointment with us. I didn’t trust myself to hear and retain all the information I felt certain would come, and she had offered to be a second set of ears.

Our appointment was scheduled for 8 a.m. We’d been advised to arrive early as there would be paperwork to complete. We walked into the waiting room a half-hour before our scheduled time and didn’t leave the office until almost four hours later.

The news we received that morning was hard to hear—harder than I had expected. For months I had been convinced that my husband’s symptoms were pointing toward frontotemporal degeneration (FTD). But the second part of the diagnosis, corticobasal syndrome (CBS) came as a complete surprise. The five-year prognosis hit the hardest.

I’d long before resorted to bribery to get Doug to go to medical appointments because he didn’t see the need for them. That day, I promised that if he attended the appointment and jumped through all the required hoops, we would grab lunch at his favourite café.

Over eggs and coffee, our daughter asked her dad if there was anything left undone that he still wanted to do. Trips? Adventures? It tells you something about my husband’s character and love for his family that the only thing he could come up with was “Painting your back deck this summer with Connor [Jenna’s husband].”

After lunch, we said goodbye to our girl, and it was on to the next thing; Doug had an emergency dental appointment. He’d loosened a crown on one of his back molars using the water flosser a week or so earlier and not said anything about it. When his cheek became tender and swollen, our family doctor prescribed antibiotics, sent us for bloodwork to ensure nothing more nefarious was going on, and recommended a trip to the dentist, who found the loose crown. It would be re-cemented that afternoon.

Overwhelmed

It was after 3 p.m. by the time we arrived home again.

Walking through the door of our condo, I felt overwhelmed with exhaustion and also—the neurologist’s words ringing in my ears—the weight of being my husband’s caregiver.

The diagnosis represented the culmination of more than a year of reading, research, and appointments with doctors, naturopaths, and specialists; hundreds if not thousands of dollars spent on supplements, blood draws, and genetic tests; endless cajoling to have diagnostic exams, eat well, exercise regularly, and just trying everything I could think of to address Doug’s symptoms in the hope of stalling or reversing them—and it all collapsed in my mind, like one of those buildings you see taken down by strategically placed explosives, disintegrating into clouds of dust.

The neurologist scheduled no follow-ups, there was no point. He told us my husband has a progressive neurological disorder that will end in death. We were on our own. It felt definitive. It felt final.

I felt completely wrung out.

Photo: Claudio Schwarz, Unsplash

Sensing my emotions, Doug asked me what he could do.

“I just want you to hold me,” I said.

We lay down on our bed. When he put his arms around me, the floodgates opened; I sobbed.

“It’s okay,” he tried to console. “Don’t cry. I’ll get better. I will. I’ll try harder.”

His reassurances cracked my heart even more widely open because I realized for all the neurologist’s words, Doug still did not fully comprehend what was happening to him.

I hadn’t cried that hard in years; those minutes of bawling in his arms were surprisingly cathartic. When the tears stopped, we both dozed for a while.

I wrote last week on the angst of living for months with the secret knowledge of my husband’s personality changes and intellectual decline. “Secret” because he didn’t want me to share that information with anyone. The word “angst” comes partly from a root that means “tight, painfully constricted, painful.” And it describes perfectly the physical sensation of keeping that secret to myself for so long.

When we awoke, I had a strong sense of needing to seize the moment and jettison the pain.

“Hon,” I said, “There’s something I need from you. Now that we have a diagnosis, I need your permission to tell people about it. I want your blessing to write about all of this. I know I’m going to need to process this and I don’t know any other way to do that.”

My husband gets my need to write. He was my greatest encourager and supporter over the decades I worked as a freelance writer. I would never have started or persisted in writing if not for his support. He used to read every word I wrote before I sent a story off to an editor or publisher. I relied heavily on his critiques to make my writing better. It’s been a couple of years since he’s read any of my work. I miss his partnership in that terribly.

“Okay”

His response did not come immediately. He thought about my request for at least 30 seconds while I stayed silent, waiting. But his arms were still around me when he said, “Okay.”

“We are shaped most deeply by exactly those things we are least able to choose,” writes Carey Wallace, in The Discipline of Inspiration.

Everywhere people are being shaped by things they did not choose—ill health, poverty, job loss, family rupture, financial insecurity, violence. Never would any of us choose such things. We only get to choose how we respond to them.

My husband gave me a wonderful gift that day when he imparted his blessing to share this most personal of journeys. He chose transparency. He chose me.

I am humbled and a little bit in awe of his choice, but I think he knows me well enough to have foreseen what I am now learning—this regular practice of telling our story is helping and healing me.

The struggle of translating my heart into words unveils what I think. It holds me accountable to the values by which we long ago chose to live our lives. And it keeps me mindful of the psalmist’s declaration that “even the darkness is not dark to you,” as I search through the shadows for the light of God’s presence and grace.