The Day After the Diagnosis
We may have an answer to “How will this love story end?”
A mystery malaise came over me the day my husband George had a DaTscan dye test. This test is used to detect diminishing levels of dopamine, usually attributed to Parkinson’s disease. Blaming my aches and pains and mild cough on seasonal viruses, I’d gone on with my business, albeit in slow motion. I took lots of naps and hits of Tylenol, which slowed the rapid pace of my life to one that many would consider normal.
The next few days were even rougher. “Shit, I’m sick again,” I said. Come Monday, I hadn’t slept all night and couldn’t shake this virus and lack of energy that had come upon me like the June fog in Los Angeles. After a long nap, I rose in time to start my last Zoom call of the day when I heard George come through the door. Unfortunately, I couldn’t greet him as I was trapped for the next hour. When I was able to zoom away from Zoom, I found George in his favorite chair, sipping bourbon, and reading a good book. The angry ocean was in the background, and nothing seemed amiss.
I still hadn’t greeted George in my normal way, and as I walked toward him, I said: “Did you see all those sheriffs and two large buses pass by?”
“No,” George said.
“I think it’s the Tennessee Titans heading to tonight’s game.” There was silence and more silence.
Then George broke the silence. “Aren’t you going to kiss me, say hello, and ask me about my doctor’s appointment?”
I glanced at George and saw the beautiful face of a man I have loved for three decades, a face that is so easy for me to read. I didn’t like what I was reading; I knew I had to sit down.
With a sly smile, George said, “You always start” (these types of conversations) with“Do you want the good news or the bad news?”
From the look on his face, I knew good news was impossible. I asked for the good news first.
“It’s slow,” George said.
He didn’t even have to tell me the bad news. “Parkinson’s,” we mouthed in unison. This diagnosis has been years in coming, a feared interloper in our lives. Until now, three neurologists have said George did not have Parkinson’s, just simply a familial tremor.
Familial tremors are when parts of your body shake. For my husband, it’s his lower left arm. For the rest of his family, the tremors present in head shaking, hand shaking, and all sorts of uncontrollable odd movements. Few of his blood relatives have escaped this family curse, chalked up to unlucky parentage.
George and I are Medicare newbies, so when we reached this milestone recently, our experience with the medical system changed significantly. Suddenly we were offered more thorough diagnostics and closer attention from our physicians. A new neurologist suggested that George obtain a DaTscan test, just to “rule out” Parkinson’s. Just like his former neurologist, this doctor felt that George did not have Parkinson’s.
We quickly scheduled the test, and within a week of establishing ourselves with the new neurologist, the answer came. It was an answer for which we were unprepared.
As I’ve watched this tremor grow, I’ve become a genius at convincing myself of an alternate reality. A recent example of this reality was just a few days after the test but before the results. “He doesn’t have Parkinson’s,” I thought, because the doctor called in advance of George’s appointment. My mind decided that the doctor called to tell George that all was well, and there was no need to go to the next appointment. However, George, not recognizing the phone number, had sent the call to voicemail because it was a lazy Saturday. When we realized the doctor had called, we skipped listening to the voicemail and spent the rest of the day reasoning with the good news:
“No need to come in. You’re clear.”
However, for a definitive answer, my husband needed to go to his Monday appointment. I regret that I was so immersed in my fantasy world that the notion of attending the appointment with him didn’t cross my mind.
Then came the news.
I have never been described as speechless, but the news rendered me silent. After a few minutes I gathered enough energy from my punched gut and hyperventilating chest to say, “Well, we never knew how our love story might end. In fact, we’ve been curious about it for over three decades.”
Now we know. Now we know.
While the internet is the greatest invention of all time, it is not the greatest source of information for someone who has steadfastly denied her husband’s Parkinson’s for at least a decade. Every time I turn an electronic page, I see information that is sad — information that steals hope and is not relevant to me today but will likely be important in the future. There is no going backward with this disease, only forward on a slow trajectory of takeaways. I am so thankful for the little “X” at the top of the browser on my computer. I can’t move my cursor fast enough to close the countless pages I’ve Googled about Parkinson’s.
Ironically, our livelihood had been derived from a business of providing professional caregivers. 25 years ago, we founded a home care business and ran it until it was recently sold. During that time, I witnessed many a Parkinson’s journey and none that I recall with a happy ending. I became intimately involved with the lives of many clients, and “Parkinsonians,” as we called them, used our services for years on end. Their journeys became mine.
As I parse my memories of our clients, I recall with clarity, gentle stories of love and compassion. As their bodies changed, many people with Parkinson’s were filled with happiness at the same level they seemed to have had all their lives. Most were not bitter. Many of our Parkinson’s clients lived with a landscape of changing health, yet a burgeoning faith in being “able” in life, rather than disabled.
As my husband and I enter a new chapter in aging, I wonder if I’m up for the caregiver role. Each time I wonder, an unequivocal, resounding “yes” comes to me. I can’t think of being anyone other than George’s wife, whatever the word “wife” now means.
