First Pages - The Sunday Vinyl Project

[CarlottaB]

Prologue – The Sunday Vinyl Project (a nonfiction memoir)
 

May 13, 1987. My husband and I are going through the last of midterms this week. After this, it’s paper writing time. The list of chores is endless, and life goes on spinning us slowly in our tracks. To hesitate, to slow down for only a moment, would be to miss much of life’s experiences. If we could only capture some of the precious times with our children and with each other and place them in a looking glass for tomorrow. The best we can capture are two-dimensional images of a time, a person, an event... There is a piece missing that makes my heart ache in viewing the past, the spirit of that time. Capturing precious moments to view and remember later is simply not possible. They are forever moving on with the person into the future. I cry. I cry for the moment to linger on in my memory forever. But it is only transitory and altered by each passing moment.

I cry. Too easily some think. A drawing by my daughter to capture the moment of a questioning of my tears draws more tears, and the reality of my soul bubbles forth forever into time—forever into future.

I love life. To the point of demanding death now, sparing myself the pain of death over time. That does not mean I do not want to live. It is my time with others held so close that helps me cling onto this life with all the strength from my inner spirit that I can muster. At the age of thirty, I have two young children to love and raise, school to finish, a husband to share a life with, and so much more to experience.

December 2, 2021. The last twenty-five years have been a whirlwind of health issues. I was diagnosed and recovered from uterine fibroids, started the National Uterine Fibroids Foundation, earned a graduate degree in public health from Johns Hopkins, worked a variety of positions as a Director of Public Health across three different states, and then chose to return to school to work on a doctorate. My focus and research evolved from uterine fibroids to public health, Marshallese, and Native American healthcare. The onset of coronavirus gridlocked all of that research. Similar to so many who had to shift to survive the pandemic, I landed a new job as Executive Director of a nonprofit in Colorado.

Only a month into this new job it all began to unravel. I cued up my Zoom PowerPoint preparing to present to our statewide community stakeholders. As the meeting got underway, my head started spinning. Speech became labored and slurred and I began to feel a need to slide onto the floor. I couldn’t seem to find the horizon; the landscape was beginning to spin around me like a Van Gogh painting. I recognized vertigo symptoms, but this was much worse. I knew I needed help.

I got up and steadied myself hanging onto the desk, the walls, the doorframe; looking across cubicles to find a face I could signal for help. Someone sees me and comes to my aid. I think it’s a nurse working in the office next to mine. She sits me back down in my office chair and calls an ambulance. She holds my hand and stays with me until paramedics arrive.

“What’s going on? Can you tell us your name?” I opened my eyes just long enough to see the faces attached to the unknown voices entering my office. They looked like firefighters with a gurney in tow.

“Carla Bacon. I’m having a stroke.” I can barely muster the words and the rest of our communication is grunts, random eye movements, and slow nods. The room is spinning as they help me from my office chair and onto the gurney. I close my eyes and try to concentrate on not throwing up. There are sounds and motions all around me. People are talking but I can’t quite make out what they are saying. Somehow, we made it to the elevator, went down six floors, and out to the paramedic’s red truck.

The hospital was just across the street, down a block or so. The ride seemed short, and the paramedics had me in the emergency room fast. This passage of time wasn’t real to me. It all happened in slow motion in my memories and chunks of time and places are missing. Parts of it seem like someone hit the fast forward. A definite time warp from office to ER.

Somewhere along the way, I lost part of my suit. A one-of-a-kind quilted jacket. I never got it back. Needles and tubes were going into me everywhere. I could feel someone at both arms and both legs poking away. I don’t remember getting a CT scan or MRI, but the evidence of images and radiology reports in my medical records is proof they happened.

Pontine hemorrhage. The emergency room staff was talking; I don’t think they considered I could hear them. I couldn’t really respond much at all. However, it seemed to me they were planning for my impending death and decided a handful of neurology medical residents might get some operative experience from my case. Maybe my imagination was working overtime in the midst of terror. I don’t really remember it clearly.

The neurologist said something about getting me ready for surgery and that jolted me into a slurred conversation where I’m certain I said, “NO.” At least inside my head I said, “NO.” I also asked the medical residents practicing on me to leave. A tall, male doctor wearing a white coat stood over me from the foot of the bed and started lecturing me about the necessity of training medical residents. Did he honestly think I was listening to whatever he was saying?

“No. I don’t want any residents working on me.” I said, with slurred speech. The words were hard to get out. The tall doctor and residents left. Didn’t go far, but at least most of them left my immediate bedside and stopped poking at me.

Then, I turned to look at the female neurologist at my left bedside.

“I want an interventional radiologist.” Again, with slurred speech. With deliberation.

I didn’t know a damn thing about strokes when it came to medical treatments. What an interventional radiologist might or might not do when it came to a stroke was beyond me at that point. Didn’t matter. Asking for a different specialist beyond the neurologist would provide oversight from another medical specialty. I learned that from my work with the National Uterine Fibroids Foundation. If it was a blood vessel driven problem, like the pontine hemorrhage they were talking about, it seemed to me an interventional radiologist might have some insight.

“Why do you want an interventional radiologist? They can’t do anything about a brain bleed,” the neurologist said, as she sat by my bedside on the left.

Seriously? Did she really think I was going to have a full-blown conversation with her at that moment?

I looked away from her. “I just do.” Closed my eyes and tried to ignore the rest of whatever was going on.

Making this request did not net me an interventional radiologist. At least not in the emergency room. Although one did visit me a few days later. It did, however, stop a potentially unnecessary treatment direction and what they believed to be valuable surgical training for neurology residents.

Looking back, it’s just a blur. From sitting in a Zoom at work one minute, to the emergency room the next. The hospital parked me in intensive care for seven days. After that, the hospital offered physical, speech, and occupational therapy but my medical insurance provider insisted on a transfer to a rehabilitation center across town. I spent two weeks there learning how to hold a fork to eat their greasy, mushy food, walk with a walker, and underwent cognitive tests for basic mental functioning. I felt dumped somewhere I didn’t want to be and wasn’t as appreciative of the therapy provided as I probably should have been. My daughter helped me settle into the rehab center. She decorated my room for Christmas and showed me how much she loved me. That helped.

Returning home, outpatient physical therapy began. I was put on a four-month waiting list for a speech therapist. As for occupational therapy, there was little to nothing offered. I had to locate and hire a private occupational therapist to relearn how to drive a car.

A little over three weeks after my stroke, on Christmas Eve, the doctor released me to return to work. I was not completely recovered and back to my normal. Neuropathy in the form of pins and needles tingling in my right hand and foot, slower speech, muscle weakness, and pseudobulbar affect came home to roost with that damn stroke.

Pseudobulbar affect or PBA for short, is something my oldest son calls the Joker effect. He is not wrong.  PBA causes extreme laughter or tears. Maniacal laughter was not the side of the coin my brain fell on. Crying. A lot of it. It doesn’t take much to trigger and it’s not easily stopped once started. The sensory overload from my motor neurons is painful. Who knew crying took so many muscles? Not me. Every crying muscle in my neck, cheeks, and eyes gets a workout. It’s worse than the facial exercises at the end of a Richard Simmons video. So far, the only thing I’ve found to interrupt the PBA crying is to ask Siri on my Apple phone to tell me a joke. They’re all bad, but one eventually makes me smile and the crying stops.

After a follow-up MRI showed vasculitis, weakened blood vessels in the brain, and a tiny meningioma—a brain tumor—it didn’t seem like these symptoms were going to leave me anytime soon. I don’t know what any of it means for the future. Longevity doesn’t read promising on the radiology or neurology reports. Hard to say what the future has in store for me. Dementia is a real possibility.

But, for now, I could work. If they would just let me.

It was a bit of a battle convincing my employer that I was truly fit and ready, but they did let me return to work. For a year. Then, they cut me loose with a few months’ severance pay if I promised not to talk bad about my employer or sue. I signed the outgoing contract and headed home to look for a new job and write this memoir.

Present day, 2023. Why am I telling you this? I started this Sunday Vinyl Project as a brain teaser to remember and document the past. Music really is the collective soundtrack we all weave throughout our lives, to mark time and events. I have a few hundred vinyls but selected only a few that instantly invoked rich images from my past to write about. I lovingly played those albums on repeat both in my youth and as I wrote each of these chapters. Auditory memory connects sound to moments from our past. In listening to these albums, I was able to recall memories and events I had thought lost to time and my stroke.

In sharing stories along the road of this anti-dementia vinyl project, I GUARANTEE there will be crying. A LOT of it. If I was writing this in a journal, the tears would be smearing every single page. Thank goodness for technology. I might short out my keyboard with tears, but no one will have to decipher my smeared scribblings. I want to have these memories to reflect on the past. To share them. This isn’t going to be an easy Sunday Vinyl Project. Tears come, be they happy or sad. My stroke damaged brain, powerless to stop them.

[DomGerard]

What a beautiful idea for a memoir. The Zoom call really got my attention!