A Firsthand Account of COVID-19 and the Debilitating Long Hauler Effects

covid-19 has caused a world of chaos and fear

This is an exceedingly difficult time. I have put this topic off for awhile now, but I have come to the realization that burying my head in the sand will not make it go away. We are living in a world of chaos and fear due to COVID-19. Things that I never would have imagined in my wildest dreams are now our harsh reality.

A few weeks ago, I sat with my daughter in a Trader Joe’s parking lot while my husband picked up a few items. People were walking around, faces hidden behind masks. I watched the employee at Trader Joe’s give each person that entered and exited some hand sanitizer and hand out masks to the customers without one.

I watched all of this and sadness flooded over me. Sadness that this is the world we must live in and a world my 8-year-old daughter now sees as normal. I am still at a loss that a pandemic has turned our world upside down, and there is no end in sight.

Each of us has been impacted by the pandemic. The changes in our lives are undeniable. My family and I have experienced firsthand the pain that this virus has caused.

a firsthand account of how the coronavirus destroyed my family

My husband’s grandmother and parents all got sick from COVID-19. His grandmother unknowingly exposed his parents to it when they brought her into their house. Since that day at the end of March, our lives have not been the same. I asked my mother-in-law and father-in-law to write about the horrors that this virus has caused them. This is their story:

On March 24th, my mother suddenly got very sick from what was called at the time a “no big deal” virus. She had to be sent in an ambulance to St. Barnabas Hospital after deteriorating within a span of 24 hours. Before she got into the ambulance, her last words to me were, “You’re not going to leave me alone?” I had to lie to her because we were explicitly told that we were not allowed to go to the hospital to see her. Nobody was able to.

My wife and I knew that we were also positive for COVID-19, and my mother was left alone in a strange hospital without any family by her side. 36 hours later she passed away. Every day since, and probably for the rest of our lives, we will hear my mother’s last words and my lie back to her.

To make matters worse, we couldn’t attend her funeral. My sister, brother-in-law, son and Rabbi were the only ones allowed to be there.

long hauler after effects

It has been exactly 6 months since that harrowing day, and my wife continues to have lingering, sometimes debilitating health problems due to COVID-19. These problems consist of severe nausea, extreme fatigue, chest pains, and headaches. Some days she only has one, other days she has them all. There hasn’t been one day in the past 6 months where she has felt 100% “normal.”

Since testing positive and quarantining, my wife has gone to almost every specialist out there. She has also had almost every test currently available to diagnose what is truly going on. All have come back negative. We are consistently being told that these are lingering effects from COVID-19, and with time things may improve.

I also have daily problems that began since I contracted COVID-19; fatigue, sensitivity to light, headaches, and the most frustrating one of all, something I can only describe as “brain fog.” That “brain fog” turned out to be Focal Onset Seizures located in the left side of my brain, most likely caused by the lingering effects of COVID-19.

My concern right now is for our “long haul” effects. My wife and I are far from alone with this Long Hauler syndrome. Tens of thousands of people, collectively known as “long haulers,” have similar stories to ours. They have also been suffering for multiple months, alone, unheard, and pummeled by the unrelenting and unpredictable symptoms that COVID can cause. “It’s like every day, you reach your hand into a bucket of symptoms, throw some on the table, and say ‘this is you for today,’ says David Putrino, a Neuroscientist and Rehabilitation Specialist at Mount Sinai Hospital who has cared for many long haulers. Of the long haulers Petrino has surveyed, most are women. Their average age is 44. Most were formerly fit and healthy.” (The Atlantic, August 19, 2020)

long haulers paying the price for early pandemic failures 

It has been suggested that in the United States alone, which currently has almost 7 million confirmed COVID-19 cases, there are probably hundreds of thousands (potentially more) Long Haulers. These people are still paying the price for early pandemic failures.

Many Long Haulers couldn’t get tested when they first felt sick because at the time tests were scarce. Others were denied testing because their symptoms didn’t conform to a list that we now know was incomplete.

Please understand that COVID-19 patients can potentially experience long-term damage. That damage is not confined to just their lungs, but also their heart, immune system, brain, and elsewhere. These long-haul cases and their effects might last for years, whether they were originally mild or severe.

Yes, age can and does play a role into the severity of COVID-19, but it does not discriminate because you are younger. If you are young and get a milder form of COVID, that does not mean that you will not suffer long term effects, maybe for the rest of your life. We must continue to take this virus seriously, because even if you get a mild form or are asymptomatic, you can pass it along to someone who might react to it much differently. My wife and I contracted the same strain, yet exhibit completely different symptoms.

Wear a mask, socially distance yourself from others, and wash and sanitize your hands. Doing these few basic, medically proven tasks will save lives while keeping yourselves and your loved ones safer.

living in a world of uncertainty from covid-19