Karen Walker

By Gretchen Reynolds

This is a story about a Karen.

She was blond, middle-aged, and midwestern — with a bit of an edge — but my friend was the antithesis of the Karen of memes.

Like a lot of stories about Karens you might come across on Reddit, this one starts with a fender bender in a parking lot. Costco, as it happens. That was followed by a phone call to the police and Karen being hauled away and thrown in jail, swearing up and down that she hadn’t been drinking.

Sweet karma. Schadenfreude.

Only, that’s not what this story, or this Karen, is about.

Karen and I met in the eighties at an ad agency where we both worked. The first thing I noticed was Karen’s beauty — she reminded me of a young Catherine Deneuve. She was petite, about five foot three, and slight. She was well-spoken with a deep, throaty voice, a hearty laugh and a blistering wit.

As we began to talk about our lives outside of work, I learned she’d come to California from Michigan with her long-time boyfriend Steve. I told her about my boyfriends, too, including a guy who’d recently dumped me after borrowing several hundred dollars I could scarcely afford to lend. She helped me craft a letter to him, concluding with, “I look forward to your swift and judicious reply.” It did not result in repayment, but his contrite response made me feel morally superior, which helped. I also told her about a guy I’d been seriously dating a couple of years before, who once looked at me softly, cupped my face in his hands, and said, “You have tiny eyes.” Karen’s response was, “I hope you told him, ‘The better to see your tiny d**k with.’”

In 1986, Karen left Steve for a VP at the ad agency, whose name was also Steve. After she and the new Steve broke up, she was stuck in Los Angeles and penniless, a period she described as, “a blizzard of bad luck, bad influences and bad choices.” During that time, she wrote to me about a trip she’d taken to Michigan to visit her childhood friend Bobby, who was suffering from AIDS at the time.

“On the bright side (and in the way of further assuring me of the absolute rightness of my visit in spite of my financial dereliction), I received upon my departure a FREE round-trip ticket. Courtesy of the buffoons at Northwest Airlines, who very typically grossly overbooked my flight. To be used at my discretion within one year’s time. Anywhere in the U.S., which is to say Detroit. Which is to say Bobby.”

When Bobby died, Karen was heartbroken, but his death lit a fire in her. She’d attended his funeral, and it was everything Bobby hadn’t wanted it to be — a lot of flowers and hymns and a complete whitewashing of his life as a young, vibrant, gay man. Karen spent the rest of her life donating to and volunteering for AIDS organizations in his memory. I joined her on one of her AIDS walks in San Francisco. She recalled in a note: “I can still remember looking over my shoulder and seeing you there. I’d been doing this for years, but it mattered so much that you were there that year. You were pregnant with Elizabeth and your presence was so life-affirming to me.”

During the nineties, Karen lost both of her parents and a sister, who left behind five young children. For nearly 10 years, Karen and her surviving sister spent their weekends, holidays and vacation time helping to raise those children — to be their family. They took the three older kids to court so they could change their surname, which had come from a father they never knew, to their mother’s family name: Anderson. Each child stood before the judge and, one by one, said they wanted the family name to honor their mother.

As Karen and her sister hugged and wept, the judge turned her attention to them and said, “This is a beautiful thing you’re doing.”

In 1998, Karen found her way back to her Steve, her true love and best friend. Months later they married, and she moved to Michigan. When Steve’s elderly father became ill, she began to oversee his medical care and quickly found a kindred spirit. “The old man” (as she called him) was a hard-edged retired Soldier who’d lost his young wife to cancer and raised his four sons with an iron fist. But he had, as it turned out, a serious soft spot for Karen, and she for him, and she cared for him with tenderness and with their shared brand of salty humor until his death.

Though Karen longed to return to California, especially during the Michigan winters, she told me more than once that she’d rather live in a cardboard box with Steve than live anywhere without him.

At the time of her fender bender in 2019, I wanted to be furious with the driver for calling the police, and with the police for arresting her, but I couldn’t. I’d noticed during our phone calls that her speech was slowing, almost to the point of slurring. “Hi Gretchen, it’s meeeeee,” she’d say, sounding like a recording played back at 50 percent speed.

I was too spineless to ask Karen what was going on, but I was certain that she wasn’t drinking. Her doctors had told her that any alcohol and most drugs would kill her. When she broke her arm in 2016, she took no pain medication, not even Tylenol. She wanted to live.

And while I can’t blame the police for charging her, they had the tools to test her for drugs and alcohol. Yet they threw her in jail all the same and left her there for the night. This image haunts me. She was so small.

She relinquished her driver’s license as a result of that event, and she and Steve embarked on a journey to find out what was happening to her. She met regularly with a speech therapist in Ann Arbor who ultimately put her in contact with a neurologist.

It took two years to determine that she had progressive supranuclear palsy, or PSP, a rare neurodegenerative disease with no known cause or cure. According to CurePSP, the disorder affects balance, eye movement, speech, swallowing and a range of motor skills.

I remember the exact moment when Karen called in January 2022 and told me about her diagnosis. I was struck by how calm she was, even as she said there was no treatment, nothing to be done.

It had been a long seven years of fighting off cancer and other afflictions, any of which could have killed her. In this case, it most certainly would. The neurologist told her she probably had two years to live, but her death was likely to be the result of a catastrophic fall as opposed to her succumbing to the disease itself.

Two months after receiving her diagnosis, Karen came to California to visit her family and see me. She used a walker and had trouble standing from a sitting position and vice versa. She was moody as hell. At one point I went to check on her and she screamed, “Leave me the f**k alone!” A moment later she was crying about screaming at me.

She fell, a lot.

The moment I’d turn my back, she’d try to get up on her feet. The day she arrived, she climbed out of bed within minutes of settling in and fell, scraping her forehead against the wall. It left a reddish trapezoid near her hairline that was visible for the rest of her life. Another time, she hopped up only to fall backwards, hitting her head on the corner of the dresser. It took several minutes to stanch the bleeding and as I held her, trying to stave off my own panic while applying pressure to the wound on top of her head, her only concern was the blood on the carpet. She wanted to pay for professional cleaning.

During one fall, she landed on the edge of the bathtub and hurt her ribs. I didn’t know it, as she didn’t let on (PSP hadn’t affected her stubbornness). But she told her sister, who called me. An X-ray showed that nothing was broken, but as I looked at the paperwork upon leaving the hospital, I read in the nurse’s notes that Karen had a problem “with PCP.” We laughed about the absurdity of Karen on PCP, but the error underscored a lack of awareness about PSP, even among medical professionals.

Looking back on the visit, the best moments were in the car, a small space in which no one could stand and everyone was safely strapped in. We drove for hours, from the Sierra Foothills to the Bay Area and back up to Placerville. One day we drove into San Francisco so she could see her beloved city for the last time and visit her dear friend Mike, who still lived in the Mission District building where they met as neighbors 25 years before.

During those hours in the car, she sometimes described her symptoms, once saying that she couldn’t control the volume of her voice, which explained why at times she shouted and at others mumbled. She asked me if her condition was worse than I’d expected. It was, and I said so. But I also told her I could tell she was still in there, still herself.

She told me how frustrating her doctor’s appointments were because the neurologist would talk at length to Steve about the progress of her disease, but he wouldn’t speak directly to Karen. She’d never held medical professionals in particularly high regard and argued with them on behalf of her father-in-law, her husband and the clients she worked with as an elder-care aide, but she was no longer able to argue on her own behalf. She cried as she told me he treated her as if she weren’t even there, yet she was acutely aware of everything that was happening around her and especially within her body and brain.

Due to the disease’s effects on her eyes, Karen could no longer read, but she still had movies and television, and it became a regular topic of conversation. We’d watched tons of movies over the years and she’d often offer up hilarious commentary, including this from 1989 after seeing “Batman” at the Mann Theater: “Nicholson is king, and Keaton makes a beautiful Batman. Bassinger delivers her usual vacuous performance and remains the cinema’s sex kitten Barbie doll.” She continued, “Afterwards, I put my hands in Jack Nicholson’s handprints, he and his pants not being in the immediate area.”

After returning to Michigan, her physical deterioration hastened until she couldn’t walk at all. Eventually, she could no longer talk. Then she lost the ability to swallow. Her final remaining pleasure was smoking, but she couldn’t hold her cigarettes, so Steve held them for her, despite his hatred of smoking in general, and Karen’s smoking in particular.

The last time I spoke to Karen, I asked her how she was feeling, a blunder that turns my stomach to this day. She muttered, “No one gets to ask me how I’m feeling.” But as she had done so many times before — like when I forgot her fortieth birthday — she quickly forgave me and moved on. I promised her I would try to write about PSP, to try — somehow — to help raise awareness about this rare and devastating disease.

Karen died on April 26, 2023, with her sister, and her Steve, beside her. But as I was writing this, reflecting on our 40-year friendship, it occurred to me that PSP may have ended Karen’s life, but it certainly didn’t define it. And I wanted this story to be about a Karen, Karen Lyn Anderson Walker.