When I first got sick in 2014, I was in panic mode – struggling, suffering looking for a diagnosis anything to explain what what occurring in my body. It was not until the autumn of 2015 that the first evidence of the culprit was found and finally diagnosed in February 2016 when I was hospitalized at Stanford Medical Center, weighing 125 pounds on my 5’8 body when the insurance was refusing the only known therapeutic at the time and I could not tolerate food – any food. I could drink about 1/4 of a Vegan Orgain and that was about it.
The diagnosis – Eosinophilic Esophagitis and Eosinophilic Colitis, with likely Eosinophils throughout my Gastrointestinal Track. The Severe Asthma came later.
It was very difficult – frustrating to endure this time. There was an attitude from friends and family that I just needed to have a positive attitude… totally easy with brain inflammation, massive malnutrition, cytokine storm, fatigue and an inability to function and care for myself.
Especially because I looked fine. I looked normal.
You don’t ask someone on an oxygen tank to run the stairs at a stadium or someone without legs to stand up and click their heels as they jubilantly jump in the air, or someone who is bald with no eyebrows, clearly going through cancer treatment to do an Ironman Competition then hang out at a bar with a bunch of people who are riddled with communicable illnesses. We don’t ask someone without fingers to type or someone who is deaf to listen for oncoming traffic or the blind to drive a car in traffic.
Now that COVID-19 is here to stay, my illness is not so invisible anymore…
It used to be…
Between California fires and being immunocompromised I learned that wearing masks became essential on bad air quality days, or during cold and flu season especially after developing severe asthma from exposure to toxic mold – the genesis of my chronic illness existence. Thanks to greedy slumlords.
Now, with the multitude of problems that have resulted from the toxic mold, my immune system has been severely diminished and the rest of the world has moved on from COVID, my illness is not so invisible any more.
IF you are someone who supports people living with disabilities, then you will be tolerant of this person at the store or mall – or whatever. If you don’t discriminate against someone who is paralyzed, blind or deaf? You will not discriminate against someone who is protecting their health.
Hopefully you are someone who had the immune system I had prior to 2014 where I would likely not be concerned with any virus, let alone COVID, then I would likely be operating as I typically would before the toxic mold stole my health at the behest of the greedy slumlords. But the fact remains that I am not. I was exposed and did get sick and my immune system is permanently compromised and I really hope that if I had not endured this misfortune, that I would be respectful and tolerant of what I did not relate to.
I still remember vividly what it was like to have a strong, healthy body and robust immune system – so I understand why the world has moved on. My hope is that people will understand that protective gear is essential for the immunocompromised. That it is not about fear – at least not the way folks may think of it – because we already know severe physical suffering so we are not going to walk into it without pause.
Hopefully you can be that tolerant person who can make someone’s day a little better by not giving them attitude for protecting their health. Hopefully you can even be their champion and offer to do things for them like, grocery store runs, pharmacy runs – things like that. Hopefully you make an effort to meet with your loved one in an outdoor setting so they don’t feel so alone and isolated.
The pandemic may be over for you. Mine began in 2014 and has only gotten more severe since COVID. And I can tell you – it really SUCKS, it is horrible and lonely and you have the ability to make that better.
Kindness matters, tolerance matters, you can be the difference – the positive light that is needed.
Chronically Fabulous Warriors 