Living with multiple sclerosis, Learning to make the world accessible, Loving life with all of its challenges

Social Justice

Immunocompromised in the time of Coronavirus

My routine this week has been to spray myself down with Lysol the second I put my car in park in the garage. Hands, shoes, clothes, bags, car…. My goal is to hit every possible disease contact point before I come into my house. And yet, I know I’ve missed some. Why? I’m terrified of bringing the COVID-19 Coronavirus into my home.

Some of you may read this and immediately respond that I’m panicking and blowing things out of proportion. In reality, I am terrified that while I was at work or picking up groceries I came in contact with a microscopic virus and am carrying a lethal weapon straight to my husband.

Dre, my husband, is immunocompromised. The medicine he takes to battle his Multiple Sclerosis works by killing his immune system. And so yes, I am absolutely one of those people trying desperately to navigate this unprecedented situation that our world faces. I am also one of those that is mind blown by the downplaying of this crisis by our current administration and baffled by those actively publicizing on social media their enthusiasm for public gatherings against all advice from health experts.

Let’s Put a Face on High Risk

The battle Dre has fought with MS has been huge, and yet every day he wakes up determined to win. He loves life and insists on working out, getting out, and maintaining his health so he can live an amazing life in spite of battling progressive MS.

He’s a fierce advocate for the earth and the driving force in our household to recycle, compost, reduce our meat intake, and leave as small an imprint as possible on our planet.

Immunocompromised during Coronavirus
Dre enjoying some quality time with the kids

Most importantly, he is a father and a family man who loves his children with all of his heart. Sure, his children might be adults now, but that doesn’t change that they’re his kids. When they call, that smile of his that lights up a room gets even bigger. He gets giddy when they’re going to come over and wants nothing more than to continue to watch them grow into the amazing adults they have already started to become.

He loves his nieces, nephews, sister, father, in-laws and cousins with the same passion. Every family gathering we have, Dre films to create a video so our family can document the love we all share and the kids will be able to look back and see their growth. Although we ourselves don’t have younger children, he has converted our basement into a Ninja Warrior obstacle course so the nieces and nephews have somewhere to play and have fun when they come to our house. While it’s difficult for him to get up and down the stairs to watch them play on it, he just loves knowing it’s there for them to enjoy. 

I tell you these stories because I want people to go beyond the statistics and see the face in that percentage of people at high-risk of dying from this disease. Three percent doesn’t sound like much when the president stands in the Rose Garden and tells you this isn’t a very big deal. When you’re immunocompromised, that three percent drastically increases, and it’s terrifying.

The nephews “hanging out” on the climbing wall Dre built for them

What does it feel like to be in the High Risk Category?

We’re facing the most devastating pandemic to hit the world in a hundred years and Dre is doing it with a compromised immune system. This is like putting him on a battlefield full of militarized weapons and giving him nothing but a switchblade to fight with.

In a situation like this any logical person would simply say, STAY OFF THE BATTLEFIELD!!!!!

But here’s what’s even more terrifying than being an Immunocompromised American in the face of the Coronavirus. There has been a gross lack of preparation and communication from our national leadership that has led to mass confusion. As a result, Dre, and other people in the high-risk categories have no idea where the battlefield really is.

“Without strong leadership the ensuing result is a population clinging to toilet paper and bottled water to ride out this pandemic.”

Our government has tried desperately to downplay this in order to “minimize” the number of cases. They seem to believe that somehow just by waving the American flag in the face of the virus it will turn around and avoid our borders. 

Pandemics don’t care what flag a country flies. There’s no building a wall that will keep this out of our country. Not testing people doesn’t mean they don’t have it, it simply means people who do have it and aren’t showing symptoms have a much higher probability of spreading the disease.

How do we Take Care of the Most Vulnerable?

We know the best way to keep the highest risk populations out of direct line of fire. Testing and Social Distancing. We are not the first country to be hit by the epidemic. We’ve had the chance to watch and learn from China, Singapore, Thailand, Italy… We know what happens when countries get out in front of the spread of this virus – and we know what happens when they don’t.

And yet, in spite of now having months of information on how to best prepare our country to contain and control this disease as much as possible, our nation’s leadership has ignored the warnings and has downplayed the impact. 

With no clear direction and a massive lack of communication, the American people have been left to their own devices to try to manage their panic. Without strong leadership the ensuing result is a population clinging to toilet paper and bottled water to ride out this pandemic. Perhaps this is metaphorically correct, because let’s face it, the handling of this has up to now been a shit show.

So Where are we Getting Information?

Social media has become a hot bed of chaos. Some people are screaming to stop hoarding supplies. Others are calling everybody who’s worried about catching the disease “nasty, because haven’t you been washing your hands this whole time?” 

Some, including politicians, are proudly parading around in crowded restaurants with little regard for the warnings posted by the CDC on social distancing. Some truly believe it’s just another flu and it will miraculously disappear. 

“If this was a pandemic of celebrity substance abuse, I would absolutely listen to Dr. Drew. But it’s not.”

Others are trying to help neighbors by buying groceries and still others are using hashtags like #HighRiskCovid19 to put a face to those who are the most at risk. 

In a void of national leadership, people are being forced to disseminate their own information and make their own decisions on how to manage the disease. This, folks, is what causes panic. 

Dr. Drew’s face is suddenly all over the place telling people to get a grip. I get that he has Doctor in front of his name, but please remember not all doctors deal with contagious disease. If this was a pandemic of celebrity substance abuse, I would absolutely listen to Dr. Drew. But it’s not. It’s a novel coronavirus which means we need to listen to doctors who are experts in this. 

So when Dr. Anthony Fauci, the Director of the National Institute of Alergy and Infectious Diseases says we need to hunker down and social distance, this is who we should listen to. Not celebrity rehab doctors.

We Can Learn From Others

Italy has given more than one very dire warning to test early and socially distance. They unfortunately learned of the devastation of this disease from experience. If you are paying any attention at all, you know exactly how this disease crippled their medical system and increased the devastation caused to the Italian people.

I don’t write this to cause more panic. I write this from the lens of a spouse with an immunocompromised husband. We are trying desperately to sift through and get the correct information so we can manage it the best we can. We know Dre’s best chance of surviving COVID-19 is to not get it. We know the best way to not get it is to slow the spread of the disease through social distancing and better understanding where the epicenters are through testing. 

We also know that if he does get the disease, he has a much better chance of surviving if he has access to a ventilator and proper hospital care if he needs it. We know the chances of people getting hospital beds who need them will be much higher if our medical system is not overrun by a major pandemic. 

We know that while the government has said anyone who wants a test can get it people are still being turned away at testing centers. We know we have no idea how many people in America actually are carrying this disease right now.

So What Can We Do?

As a result of all of this, we have hunkered down. I am fortunate in that I do not have to go to work for the next two weeks. Me being able to be at home seriously decreases the chances that I will bring it back to him. Because he can no longer work and is on disability, he is also able to stay at home. 

“Take care of our neighbors by following the advice and guidance of the medical professionals who understand this pandemic.”

Not everyone has this luxury. There are those in the high-risk category who still have to go to work. There are spouses and children of those in the high-risk category who still have to go to work. There are those who will not be able to go to work who will lose their income. 

And so even if Dre were not immunocompromised, my duty in this crisis stays the same. Take care of our neighbors by following the advice and guidance of the medical professionals who understand this pandemic. Look to multiple sources to get informed and search for facts and not just the information that suits one way of thinking. 

This blogpost from KevinMD.com does a great job of laying out facts and realities of navigating this time in history.

While I don’t have much faith in American leadership right now, I do have faith in Americans. I have watched the tide on social media turn from judging those who are staying in to recognizing that is how we will take care of our neighbors.

This is what gives me hope that in spite of a lack of national leadership, there are so many Americans looking out for those the most impacted by this disease. Because together we can slow this spread, and the high-risk populations deserve the same chance as the rest of us to survive this.  

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