Dispatches from a Hot Zone: The Quest for Life, Love and Identity in an Age of Plague, Capgras and Bonnet Syndromes

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Suzanne climbed to the third floor with the sure-footedness of an ibex in the Alps, a testament to two years of PT following two serious strokes in 2018. 

So it wasn’t the stairs that toppled her. Rather, her carry-all snagged on the bedroom door, spun her off-balance, staggered her backwards – and sent just one small part of her heel overhanging the stairs. 

That was enough. She tumbled ass over elbow, calling my name on each cartwheel. I got there about the time she landed one-story down.  She was frightened but conscious as we went through moving the majors gently – limbs, neck, head – to assess the damage. What was broken? 

Nothing, it seemed. Miracle a dieu.  She was whole.  Or so it seemed.  Neither of us were anxious to escalate to ER. We both knew that scene.  Bleached light. Beeps. Alarms. Groans from next door.  Hours of it.  

July 2020

And now, circa February 13, 2020, rolling in toward us like one of those CGI magical Harry Potter storms with a belly full of lightning: the specter of Covid 19. 

But, in Summit, New Jersey, just west of New York City, we were safe in mid-February and we laughed at our good fortune.  Nothing broken! Humor always has figured large in this marriage even when things got tough.  

For example:

Next morning and Suzanne looked up, vamped just a bit and said, “Happy Valentine’s Day baby!”

Bruises had set in on her head and face, ranging from mustard gas yellow to ripened eggplant.  It looked as if I’d beaten her with a bat. 

“ER,” I said. And she nodded her head yes. We couldn’t discount brain injuries with her history of stroke. 

So the ambulance guys are old friends and made short work of it.  They hauled her down from the second floor while doing their surveys. 

“Would you say you climb the stairs on a regular basis A) Rapidly B.) At a regular pace. C.) Slowly D.) Very slowly,” said the attendant. 

“Slowly,” Suzanne says. 

There is a pause. 

“In her defense though,” I tell the guy, “she is REALLY fast going down them.”

Suzanne starts to laugh and lose it a bit. “You asshole,” she says with a chuckle.    

“He’s talking about me falling,” she explains to the fellow with the clip board, who looks from her to me and back to her wondering if he needs the psych guys. 

“We joke a lot,” I say finally and the guy writes something down. 

It’s the last time we joke.  For a long time. 

There’s a longer story here but the speed-feed is this: 

Suzanne has a brain bleed, a subdural hematoma.  The docs stop all blood thinners.  They have to, so she does not bleed out.  But this also means her past stroke areas no longer have the protection of slick blood sliding through cramped passages.   No thinner? More risk of clots. 

She stabilizes. The bleedings stops. She’s discharged, but the next day she’s speaking in tongues. 

“John is an opal,” she says when asking for her coat. 

“That’s not what I mean,” she says in frustration and says with great concentration and force:  

“What I mean is, ‘John is an opal.’”

Back to ER. Into the operating room.  The brain has grown a membrane around the brain bleed and that’s swelling, pressuring her brain. The surgeons go in with mini-cameras and tools, work their magic, seal off the brain bleed and all is well. She is discharged and home. 

And we’re back to normal.  

Normal except that Covid 19 now has descended on New Jersey and with New York we are officially now the hot spot.  It is at this time when Suzanne says: 

“My head hurts.  I have no idea where I am and what we have planned for this afternoon.”

Does she remember the fall down the stairs?

“What fall?”

We are back to the shop – the neuro shop – though this time Covid is there too and I barely am let out of the car.  They whisk a masked Suzanne into the scan rooms and her neurologist gives us the bad news.

Brain bleed? No problem.  But Suzanne’s old 2018 stroke?  Which had been controlled?  

It finished itself off. There had been 80 percent blockage, then 50 percent blockage after the 2018 op. Now there is 100 percent blockage. Which is to say whole areas on the right side of her brain now are starved of oxygen and just gone. 

My note to friends at the time expressed the emotional “Covid Effect” well enough. 

Suzanne back in ER with new stroke symptoms. 

They will not even let me in the parking lot.

Can’t possibly express how heartbreaking and hard it is to send a vulnerable loved one, scared and confused, into a hot zone without the ability to be present and comforting. 

Not blaming them. Has to be like this to protect her. 

But tough nonetheless.

There’s no corrective operation here.  The stroke has taken out part of the right side of her brain – the part that helps assemble visual images and context.  

Still, we figure, we’re lucky.  There is no physical impact on the left side from the right side break. Her speech is normal. 

Fact is her next stop is PT and OT rehab and then home – all good signs.  Again, I cannot be there — even for “transfer.” But I know she is in a state of the art facility. I visited a friend there earlier that month and we joked about the Hilton-like qualities. 

Not for her.  And this is the first hint not all is well. They move her nightly, she says. Her nurses change constantly.  Some are dressed oddly.  Touches of Venetian carnivale costumes.  She is in a basement room. They are cruel and disparaging of her. They move her to an old house. 

I’m alarmed. They assure me she has been in one room. She is getting great treatment. But she is disoriented for sure, they say. 

Suzanne sobs and says simply on the phone: “Something horrible has happened to me and I do not know what it is.

There are a few days of this and I end it:  the stress isn’t worth the therapy.  I bring her home.  I don’t know what’s wrong. But home is what she needs. 

She arrives there in tears of joy and we embrace. We settle down into a new bed, set up on the ground floor to avoid stairs and she says it is so good to be home. 

But in the morning, I am awakened by a gentle tapping. 

“I don’t mean to bother you, and I don’t mean to be rude” she says, “but can you tell me where I am? And…. who you are?”

It takes me half a second to understand this is not one of our goofy jokes.  

“You’re at home,” I tell her. “I’m Bob Frump, your husband.”

She looks at me. I have landed from the moon.   

“No you’re not,” she says.  “And this is not my home”

I wait for this confusion to ebb.  It does not. She is intact intellectually. Her personality is unchanged.  For the rest of the day, she comfortably chats with me and we interact pretty much as we normally did pre-stroke. She beats me at Jeopardy. She recognizes our beloved aide Mila with no challenges. 

All goes well. 

Unless. Unless the idea of me being her husband pops up. 

Soon, it becomes obvious, she also sees others in the room… versions of me it seems, but still not clearly her husband. 

The neurologists nail it instantly.  This has nothing to do with psychology, emotions or mental illness they stress. These displays are classically representative of visual agnosia.  These are rare syndromes within visual agnosia but famous ones. Bonnet Syndrome, coupled with Suzanne’s macular degeneration, means she sees people who aren’t there.  Generally, these are not threatening figures – just puzzling. 

 Capgras Syndrome covers the part where husbands seem like imposters.  Sometimes it is called “face blindness.”  Brad Pitt has a mild version of it.  People at parties think he’s a dick because he doesn’t say hello.  He doesn’t say hello because he can’t connect the face and the person.   

But here we have a far more serious situation.  The brain does not just “see” as a camera sees.  It places visual images in contexts and particularly images of loved ones are wired with an automatic recognition of sorts – a sort of “good person” reflex pleasure feeling that runs through the amygdala. Husband. Image. Neurons flash. Amygdala fires back “good guy.” Or so runs one theory.  Or my lay understanding of it.

Strokes can scramble that. So while the visual image is there, the context is not. The auto-affection and recognition is gone. The husband “Bob Frump” still exists somewhere.  I’m just not him. Or at least my face is not his. 

Or the amygdala gives me the cold shoulder. I am in a line for the husband club – and the amygdala just plain don’t have my name on its list. I ain’t getting into this disco.  

Not all the time, I stress.  The neurologist gives us some drills.  Suzanne should touch me.  She should feel my wedding ring. She should ask me, “Are you my husband?” She should take voice clues, not visuals. Odors, smells, colognes also can work. (Not for me, unless you count the occasional dab of Vicks.) 

“If you do that – touch him, feel the ring – ask him the question — and everything checks out, you can be assured this is your husband and a good guy you can trust,” the doc says. 

It works and works in part because the visual is de-emphasized.  The old joke about the husband caught red-handed is, “Are you going to trust me or your lying eyes?”  Only this time, the husband has the high ground. 

“When you look at me,” I tell my wife who holds two degrees in English Lit, “your vision is not a reliable narrator.”

About a third of the time, we’re tuned in in this manner. “I’m so glad I found you,” she will say.  “I felt abandoned. I am so happy I have family. I can see you. I see you!”

Another two thirds? We are in a mid-ground area where we have a normal relationship, joking as we do, watching Jeopardy (she still beats me handily), visiting friends and family via Zoom or in socially distanced gatherings. But the husband role is not mentioned. If it is? Expect a challenge or a confusion.  Often she refers to wondering where Bob Frump is and I’ll just let it go. 

But there is a one percent slice where it is hell for her and heck for me.  She is simply lost. 

“How did I get here? Where am I? Who are you?”

“I’m your husband hon.  This is your home.”

“Liar!  This is not my home. Where is my home?  Where is my husband? Why are there so many people in the house? Where is my family? Liar! Liar!”

There is little to be done there but hold her if she’ll let me and ride out the tears. I cannot imagine her plight, her confusion. 

When she’s ready, she’ll ask, “Tell me again, how did I get here?”

And I tell her the story – a story told now I would guess a thousand times these past four months.

“You and I met at a party in 1980 given by Bill Marimow and Diane Marimow.  You went to high school with Bill. I worked with him at the Philadelphia Inquirer.

“We were seeing other people then, but you seemed to like me and said later you thought I was funny.  

“I thought you were great because you helped your daughter sell magazine subscriptions to a room-full of people.  I bought a bunch – mostly I think so I could meet you again. 

“I loved your smile. I loved your hair. I loved your sense of humor. I loved that you loved most of the things that I loved. I admired the fact that you put yourself through Penn as a single mom, and that you made a turkey galantine – a recipe I once tried and abandoned as the Everest of cooking. 

“We started dating about a year later in 1980 and found that we really loved each other.  We were married in 1982 and your daughter Caitlin, who is named Dean now, was your maid of honor. Tom Masland was our best man. Dean is a holistic healer and a computer engineer. 

“We went on a honeymoon to Europe that summer, snorkeled up and down the Riviera, saw Rome, Paris, London and I insisted on buying Cognac in Cognac.  

“You told me I should buy Speedos.  We were in a department star in Oxford. I thought you were standing next to me. I picked up some scanty Speedos, turned and said, jiggling them, ‘How would you like to see me in a pair of these babies?’ 

The woman standing next to me was not you. She was a stranger. A very alarmed stranger. 

“You gave birth to our wonderful daughter Sarah in 1984 in Bryn Mawr hospital.  I changed jobs in 1986 and we moved to the New York City area. 

“After Dean went to college, we helped raise Sarah into a great young woman who was a smart, kind, energetic leader – president of her college student government and now the co-founder of a hybrid college in Austin, Texas. 

Europe 1983

“You began painting in Provincetown two decades ago and your wonderful oils hang in our living room. I love them. 

“You began having health problems about ten years ago and have had eight strokes, and the last one really clocked you honey so your vision and context don’t compute. But you can tell I am your husband by touching me, listening to my voice, and asking me if I am your husband.”

That satisfies her.  Sometimes. But ten minutes later, she often has the same question. 

And amid all this, if an old friend stops by, it is as if nothing has happened.  She knows the friend. She knows the context. There is no confusion of place or time.  I can be present but avoid inserting myself as “husband.”

The brain, we are told, may do some work arounds here.  This isn’t like Alzheimer’s where there is eventual total deterioration.  There is nothing psychological or remotely akin to mental illness. Repeating non-visual cues can help.  At least on the Bonnet Syndrome, our neurologist says, you’ll see a change for sure over time. 

Capgras is a crappier customer.  But you can see Suzanne dialing up other senses than visual. It’s called plasticity.  The brain surrounding the stroked out parts puzzles how to do work arounds. 

“Uh, control room, we got serious visual disruptions in Sector 893. What can you do for us with touch, feel, hearing, other visual?  Get on that will you?”

And indeed, that seems to be happening. 

She hears my voice and knows I’m her husband.  Her auditory senses have dialed up a ton and a half. Songs she stopped listening to ten years ago or so are important to her.  Vivaldi. Bach. She can’t get enough of them. 

And she plays “our song” a lot. Van Morrison.  The one we used to dance to a lot alone on romantic nights. 

We dance to it now, sometimes as husband and wife, sometimes in that mid-range where she is not sure but I seem like an okay guy.  She wants to dance. She wants to dance to this song. This particular song. 

The lyrics are reassuring and heart rending all at the same time.  

In one persona, as husband and wife, they are a remembrance and a celebration.  In another: they are a quest. Aspirational. 

I’ve been searching a long time
For someone exactly like you
I’ve been traveling all around the world
Waiting for you to come through

Someone like you makes it all worthwhile
Someone like you keeps me satisfied
Someone exactly like you

I’ve been travelin’ a hard road
Baby, lookin’ for someone exactly like you
I’ve been carryin’ my heavy load
Waiting for the light to come shining through

Someone like you makes it all worth while
Someone like you keeps me satisfied 
Someone exactly like you

I’ve been doin’ some soul searching
To find out where you’re at
I’ve been up and down the highway
In all kinds of foreign lands

Someone like you makes it all worth while
Someone like you keeps me satisfied
Someone exactly like you. 

I’m glad she’s searching for me.  I hope she finds me fully. Today was a good day and she did.  I was her husband again.  We talked about maybe visiting our kids in Austin.  

How would we handle the stairs there, we wondered? If she had to go to the second floor?  Install an elevator? One of those stair lift things?

She got a mischievous smile on her face. 

It’s Texas, she said.  Don’t they have pack animals? 

We laughed hard for the first time in quite a while. 

And here’s to that, kid. Here’s to that.  

2 comments

  1. Frumpus:

    I could not log into the Word Press site to comment so i had to email you directly.
    Dispatches was so endearing, heart wrenching and beautiful simultaneously.
    I did not have a clear idea of what you guys were going through before.
    Having lived those years with you both I can attest how lovely you both were, and still are.

    I remember your wedding (I was the music at the ceremony, and played an original composition that I still have not finished).
    I remember the wedding party where we danced like nuts singing John Mellecamp’s Jack and Diane.
    We played it over and over and everyone singing the chorus, at the top of their lungs:
    ‘Oh yeah life goes on! Long after the thrill of living is gone.’
    I always thought that some day I would come back to you guys years later and update the tune to Bob & Suzanne.
    It fits perfect rhythmically.

    I the early eighties, when you guys first met, there was a party on East River Drive in one of the boat houses there. Lots of outside lights, beer kegs.
    I wound up dancing with Suzanne to some big fabulous long playing rock song.
    There was a band and a number of rooms, and Suzanne just decided to lead me on our dance from room to room with the song, never missing a beat.
    I remember how elegant and graceful she was dancing, and how she never stopped smiling.
    And I knew how lucky you were to have such a beautiful person to love.

    I am not sure how to console or uphold you and Suzanne through these trials.
    I was thinking of some type of Dr. Seuss book, Bob I Am, making it handy with many pictures.

    Even though my prayers can be threadbare and inconsistent, I offer them up.
    We have been struggling mightily with issues with my youngest son (now daughter who used to be Violet and now is Iris.)
    Mental health issues along with hallucinogens etc are a powerful confusion agent of the human spirit.

    Please accept my offering of Peace & Love for you both.

    /r

    p.s. if there was a way to put this up as a comment I would love to.

  2. As a man of 71, a veteran to the altar, I look at the pics of you two and see ourselves in you, grateful for having dodged the bullets of fate. Thank you for this. Thank you for making me think of the times that I have fallen down stairs (not for decades, actually) for the comfort in the words ‘we will always be together’, for the knowledge of the commitment that that requires.
    I looked into faces that I have loved that are no longer here, and felt grateful for the years, the days the minutes that we had together. I am a lucky man.
    And I think that you are too, Mr. Frump. Yes I do.

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