What I Hoped the World Learned From COVID-19

Isolation is terrible! It’s lonely, it’s stressful. It wears on families, relationships, mental health and that is just the tip of the iceberg! It drains resources. It hampers earning possibilities and income. In essence the isolation of caring for a family member with severe disabilities and complex medical issues affects every single part of daily life.

As I watched the entire world come to grips with the fear of an unknown disease and unknown outcome, I thought finally! Finally, they will get it! They will get that their health decisions affect the whole world! Your decisions when you are ill affect those around you!

Just as your decision to drive drunk, run a stop sign, speed through a red light can end in not only your injury, but the injury of others, your decision to leave the house while sniffling, coughing, or feeling ill can lead to the illness and death of not only yourself but of others as well.

I’ve tried, unsuccessfully, through my daughter’s disabilities and disease to explain to others how their decisions to “tough it out” or “carry through” end in life or death situations for others. How going to work, school, shopping etc. when you feel ill or are displaying symptoms, isn’t heroic. You may end up only displaying mild symptoms but the chronically ill person standing next to you in line at the grocery store ended up hospitalized! The person you work with that is fighting cancer and is immune compromised from the chemotherapy ended up fighting not only those battles, but the added one of your “small cold.” They ended up hospitalized or worse. The medically complex child at school got your “sniffles” and ended up in the ICU for a month.

You are not “strong” for doing things or going places when you don’t feel well or are displaying symptoms! You are dangerous and sometimes down right deadly! Not just today, not just COVID-19, but every single day. People realize stopping at a stop sign isn’t just for your safety, but the safety of others. Stopping at a red light is for the safety of everyone on the road. Staying home when you don’t feel well is like stopping at red lights and obeying speed limits when you’re late for work, the cost is small, it may be noticeable and uncomfortable, but the alternative could be so much worse. Choosing to run that red light may get you to work, or it may end in your death or someone else’s!

I thought finally! Finally people will realize how stressful, scary, isolating it is to be in constant fear of someone exposing your child or loved ones to a minor symptom that could end up being deadly!

Finally! People are going to realize how the whole world would just run smoother if you stay home when you don’t feel well!

Finally! People will not only realize the loneliness that comes from isolation, but every other very real problem we’ve encountered for every single day of our child’s life. People will realize what it is like not to go to movies, to work, to restaurants, to parties, because of the danger. The loneliness! The mental strain! The complex issues with child care just to go to the grocery store. How living a normal life, work, socializing is a pipe dream. Finally, people will realize what they experienced for a few short months, we have been living for years.

Instead, here we are. We are in another wave of COVID-19 that has been even more deadly than the last. Here we are, debating whether killing those weaker than ourselves is a choice of personal freedom.

Is stopping at a stop sign a political choice? Is stopping at a red light? Is driving drunk an expression of personal freedom?

I had hoped we would realize that staying home when those sniffles may kill your best friend was a small sacrifice to make, like calling a cab when one has had to much to drink, even if calling a cab is expensive, the alternative could be so much worse.

Those of us who have lived this life for years were hoping this would bring the rest of the world into understanding just how much we have given up and sacrificed for the health and safety of those we love, and for those we have never met. For those who have lived this isolationist life for years, watching the rest of the world lose their minds over a few months has left us baffled.
The whole world is counting on the choices we make. The life you save when you stay home, wash your hands, and isolate for a few days, may be your own, it may be the girl with Rett Syndrome down the street. You may miss a party or the release of a new movie, they may end up missing weeks in the hospital, ICU, or even worse.

I’m here to say thank you to everyone who has sacrificed, missed out, or felt isolated. You are not alone. You are truly heroic.