Story by: Lauren Jones on August 16, 2021
COVID-19 almost killed me, but instead it saved my life.
I tested positive for the Coronavirus on Nov. 13, 2020.
I’ve spent the time since then recovering physically and mentally, as a long-hauler.
Like many of you reading this, I also was running on empty. I was raising three kids — two teenagers and a toddler — while trying to balance a high-pressure career as a local television news anchor, with a wake-up call of 2 a.m.
The pandemic put my life into perspective.
Before COVID-19 I spent far too long simply being alive, and not enough time actually living.
The saddest part: I never took the time to realize there was a difference. But after I lost my job, I was able to see life through a new lens.
It took time, but slowly the darkness started to fade, and I could see the light again.
Things were brighter, clearer, and they made more sense.
Until Saturday, May 29, 2021.
When nothing made sense. When I was more confused than ever. When I thought COVID-19 was going to kill me, again.
Saturday, May 29: Where did the time go?
In two days, my baby boy was turning 5!
We were celebrating early though, with a family birthday party. It was like any other day, except the record heat we saw the week before was long gone, and record cold had moved in.
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We rented a bouncy house for the kids, which quickly turned into a fire pit and s’mores kind of day.
Family we hadn’t seen in a while, because of COVID-19 restrictions, made the trip to celebrate our sweet angel.
After all, a vaccinated party is the best kind of party, and well worth the wait!
We had a great time and everything was perfect, until it wasn’t.
Everyone was asleep, and my husband, Jude, and I were well on our way.
We were in bed talking about the party, when I started to tell him a story.
The problem was that I couldn’t finish it.
Like many other times throughout the last seven months, my COVID-19 brain fog had put me in a fog.
But, this time, there was no escaping it.
The story was right in front of me, but images were hazy and I couldn’t quite piece them together. I was lost somewhere between the beginning, middle and end. I remember really concentrating, then getting extremely upset when I simply couldn’t remember.
That’s when I started to cry, but it wasn’t a normal cry, more like a prolonged whimper.
I could feel the tears rush down my face, but I couldn’t wipe them off.
My hands were coiled up in tight little fists, stiff as a board, glued to my side. All I needed were boxing gloves, and I was ready for battle. If I only knew then what I know now, that I was in for the fight of my life that night.
All of a sudden, I started sobbing uncontrollably.
Literally — uncontrollably. I wasn’t controlling my tears. I wasn’t intentionally crying; something within me was forcing me to cry.
I had never felt anything like it. I can only compare to a horror movie, or being possessed. It was terrifying.
Jude held me and tried to rock me to sleep, but it wasn’t working.
I felt a tingling sensation come over me, then all of my sudden my entire body went limp, and everything went dark.
The next thing I remember was in my mother’s arms. She was staying with us for my son’s birthday party. Jude was on the phone with 911.
He looked like he was in shock, pacing back and forth in our bedroom, just staring at me like he thought I was going to die. My mom had the same fear in her eyes, too.
It was becoming abundantly clear, with each passing second, that whatever was happening to me was out of my control.
My body would tense up, then relax. My legs would start shaking frantically, then relax. My entire body would start convulsing, then relax.
Each one of these episodes would become more intense and more painful, until my body would go limp, and everything would go black. I had no concept of time, I felt like this had been going on for hours.
I had never been so scared in my life. I was stuck in my own worst nightmare, and I was the villain. I needed a hero. I needed someone to save me.
Sometime between my first, second and 15th episode, my bedroom became a hospital room, filled with EMTs and firefighters. There they were, the true heroes in this horror story.
Everyday people, moms and dads, sons and daughters, risking their own lives to save ours.
I don’t remember much about that night, but I remember enough to know I’m here because of the people who saved my life.
The ones who showed up in the middle of the night, leaving their own families to be with mine.
The ones who were at Norton Brownsboro Hospital, exhausted from the pressures of working during a pandemic, but treating me like I was their first patient of the day.
I remember their faces, like one of the paramedics who held my hands while I lay in my bed screaming, “What is happening to me?”
We just stared at each other. Something about his eyes made me feel OK when everything happening around me told me otherwise.
I remember another paramedic telling me stories about her son, the same age as mine. She gave me a reason to fight.
I was going to be OK; I had to be.
I remember the face I saw in the ambulance every time I “came to” smiling back at me and reassuring me.
Then there was the nurse in the emergency room, who told me she was a widow, and jokingly said her kids call her the warden.
She said she was tough on them — she had to be, to protect them from evil in the world. Behind her mask, I saw the strength and resilience in her eyes.
She protected me that night too, and took care of me like one of her own. She may be a widow and a warden, but to me she was a warrior.
A superhero, just without a cape.
I met a lot of them that night.
Like my nurses and Kaylyn D. Sinicrope, M.D., neurologist with Norton Neuroscience Institute.
I don’t really remember what we talked about, but I’ll never forget how each person made me feel.
Perla’s shift was over in the middle of the night, when I was groggy and extra confused.
When she left, I remember reaching for her hand and sobbing; I didn’t want her to leave. A complete stranger became my safety blanket. Her compassion and friendliness kept me warm, and her spirit gave me hope.
I needed it, especially as I started on this medical journey to find out what was going on.
First was the CT scan, then the MRI. I remember looking at the two wonderful MRI technicians when all of a sudden, my legs started shaking uncontrollably.
It was happening again.
A painful sensation took over my entire body, and I couldn’t control it. I was hysterical and sobbing. As quickly as it came, it was gone.
Up until that point, Jude had been with me every time I had these episodes, so I was terrified to lose control and go through this, and come out the other side, without him.
After that, I had a routine electroencephalogram (EEG), which showed slower than normal brain waves in my left temporal region.
My doctors were concerned, so they decided to do another EEG. This time I would be hooked up to a machine for 24 hours to measure my brain activity.
The time passed just about as slowly as it did when I was having one of my episodes.
I would’ve bet money I had been in the hospital a year, but at that point it had just been a few days. But that day, May 31, was the most important day.
It was my son’s actual birthday. Five years before to the day, I also was lying in a hospital bed, but under the most magical of circumstances.
This time, I was utterly devastated. I was in the hospital, and my baby was at home. He woke up on his birthday without his mommy and daddy. To this day it breaks my heart just thinking about it.
We were in desperate need of some good news, but the hits kept on coming.
We got the results from my longer EEG: nonepileptic seizures.
Diagnosis: PNES, or psychogenic nonepileptic seizures.
I’d never heard of it before. According to my doctors, it’s very common, but not as commonly discussed. It falls within a broader category called functional neurological disease.
People can have seizures, nonepileptic seizures and/or PNES, for a variety of reasons, and a combination of reasons.
I had never experienced anything like it before, but my doctors told me, in my case, my body was essentially shedding the physical and emotional stress it had endured since I tested positive for COVID-19 in November 2020.
Every day, doctors and scientists are learning more about COVID-19 and the lasting impact it has on survivors and long-haulers like me.
When I first found out I had COVID-19, the journalist inside of me thought it was important to share my story.
Truthfully, I thought I’d be in quarantine for two weeks and could report on my experience and move on, but I quickly learned that wasn’t going to be the case.
I became part of a “COVID-community” a group of other survivors on social media who talked about their journey and shared information from medical experts to help others who were struggling.
When I had more than 15 nonepileptic seizures, and more when I came home from the hospital, I wasn’t sure if I was going to share my latest health scare publicly.
I wasn’t a television journalist anymore, and people wouldn’t notice if I was “gone.” After all, I was trying to heal and move on.
Then I remembered that I was part of a bigger community, a group of survivors who helped me more than they would ever know.
The journalist, but more important, the survivor inside of me, knew how crucial it was to continue peeling back the complicated layers of this virus.
It’s not over after quarantine. It’s not over after the obvious symptoms end. It’s not over after seven months and another hospital stay.
For me, a new journey has just begun, learning to take care of my mental health, too.
This is also the next step for millions of COVID-19 survivors, but most of the time it happens in silence.
As a society, we focus more on the physical fallout from the virus, and not the mental anguish many survivors face.
I hope that changes.
Fortunately, according to my regular neurologist, Brian M. Plato, D.O., also with Norton Neuroscience Institute, my nonepileptic seizures are not permanent.
However, managing the stress my mind and body endured following COVID-19, which caused my seizures, is part of focusing on my mental health.
I hope by sharing a tiny part of my journey, it will raise awareness about this enormously complicated virus.
And, if you’re struggling with mental health, as a product of COVID-19 or otherwise, I hope you know asking for help is the greatest form of strength.
The weight of these words were too heavy to bear a few months ago, but they are my truth today.
It took me losing everything I thought was important, to find out what truly was.
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