My child started sneezing, coughing, and had a runny nose, again…
I kept my kids home for the 2020-2021 school year with the uncertainty of Covid. My motto has always been better safe than sorry and we have family who are considered very high risk.
But despite our restricted contact with the outside world, our family got Covid in the Fall of 2020. And before I even knew that Long Covid was an alternative to recovery, I was experiencing bizarre symptoms that made me scared that something was very very wrong with my heart.
After many doctors, specialists, and testing, I was diagnosed as a Covid Long Hauler.
The summer of 2021, the CDC dialed back their masking recommendations even though there were many who were unable to be vaccinated due to age or underlying health conditions.
In July, our School Board announced that they would no longer require masks, without any knowledge of what the numbers would be like come fall. Unfortunately, my older child was in the thick of their teenage years and needed to be with people. I felt like I had no choice but to let them go back to in-person schooling.
Once school was back in session, I watched the cases in Florida rise to shocking and concerning numbers. By this time, my pre-covid health was turning into more of a memory. I was on month 9 of illness and I was experiencing related – but new and worsening symptoms. I was collapsing due to frequent blood pressure drops, having difficulty walking and standing, and developed both an intermittent tremor and some really scary memory loss.
I learned that Long Covid is not rare. The current studies had crazy numbers, everything from 5%-30% of those infected went on to develop Long Covid.
I tried to inform our school of the science behind 2 way masking and the long term risks of even a mild covid infection.
With conservative math we could have hundreds of children in our tiny school district who become disabled after catching Covid.
Masks became an extremely hot topic and I didn’t understand at all why, when death and disability was on the table. I talked to people in my community to both warn them of the risks of infection for a large portion of the population, and try to better understand their perspective.
Teacher friends complained about how difficult it was to get young kids to wear masks correctly. Many parents in my area felt that masking was not effective, and some felt that the mask was making their child sick, most said their kids complained of headaches which is interestingly a very prevalent Long Covid symptom.
But most shockingly to me, a large number of the people in my community saw the mask as a symbol of government control. They organized an anti-mask petition with hundreds of signatures that claimed the goal of masking was to socially distance our children as part of a grand scheme to isolate and de-humanized our youth. All of this made my head spin.
They felt the mask took away their freedom, as I watched my independence crumble thanks to an extremely mild case of covid.
To Covid Long Haulers, the threat of reinfection is horrifying.
We know what Covid did to us before, and we do not want to find out how much worse our quality of life can get. Many make the unproven assumption that the more you are exposed to Covid, the more protected and better off you will be, but in reality. We do not know if this is the case. (See The “Multiple-Hit Hypothesis” of Neurodegenerative Disease)
In the Winter of 2022, the CDC decided to put the burden of exposure on those that are high risk instead of making the world more accessable with universal masking.
The day before the CDC announced the new guidelines, 95% the counties in the US were areas of substantial / high risk. With the new categorization, just 14% of counties fall into the high-risk category.
More than 100 disability advocacy groups have told CDC Director Rochelle Walensky that the agency’s new face mask guidance threatens the health of the disabled, people of color, and chronically ill, immunocompromised, and older Americans.WebMD, Disability Groups Urge CDC to Change Mask Guidance
By Ralph Ellis
Long Haulers don’t have a choice but to be recklessly re-exposed to Covid: Getting our medications, grocery shopping, and sometimes even in the healthcare setting itself. Our household members who are regularly out in the world are likely to bring home illness.
We fight to lower our risk of reinfection and everyone’s risk of death and disability – but our screams are not heard and all too often met with ridicule.
As I use up the last of my rapid home tests, I remember when I fought the good fight and I pray that I am negative.
I wonder if my friends and family would be willing to sacrifice their time to help take care of me if I get covid again and become bed-bound.
I think about the emotional damage I am causing my children because I can no longer play and they do not understand why.
How will we pay our bills while I wait for disability to be approved?
Will we lose the house?
Will my partner even stay with me when I am unable to do the things they love most?
I take a deep breath, negative. I have avoided worsening my already serious condition for now, but I am scared my time is limited.