How the World Turned Upside Down: living through COVID-19 as an immune-compromised person.

By:  Sal Santa Ana (with Diana Nguyen)

My head is spinning. It feels like that I’m stuck in a bad dream and I can’t wake up. People are lining up for hours just to buy toilet paper. There is a race against time to create a vaccine. Videos on how to make your own mask are trending on YouTube. Hospitals are being overrun by new patients. There is a shortage of medical equipment: ventilators, masks, gowns and other PPE for doctors and nurses. Auto manufacturers and their suppliers are now building ventilators, masks and face shields. Cities are converting convention centers into field hospitals. Medical professionals are saying one thing just to be contradicted moments later by the President. Non-sense miracle cures are being advertised online. On March 20th, the Governor of California issues a state-wide shelter in place order. I am washing my hands way too much. Last week, initial jobless claims jumped to a record 6.7 million. Non-essential businesses and schools are closed. Large events of all types are cancelled. I haven’t seen any of my friends and colleagues since March 5th. Now, the only way any of us can meet is via Zoom, Facetime or Hangouts. In order to minimize the chances of infection, my wife is the only member of our family who can go outside. COVID-19 has changed our lives in so many ways and it is unclear when and if things will ever go back to the way things were.

So, how did we get here you ask?

Map illustrating the global spread of COVID-19

For starters, you know that movie where there is a serious outbreak of a dangerous new pathogen and civic leaders ignore the warnings of medical professionals, scientists and doctors? And you laugh to yourself saying: “that would never happen in real life.” Well guess what? It’s totally happening in real life.

On January 23rd, Wuhan was placed under quarantine for a virus and the Hubei province followed within days. Effectively 35 million people are ordered to stay home, and a series of inevitable events carried this new pathogen around the world. According to the latest guesswork, COVID-19 arrived in my city – Los Angeles in late February.

This little virus threw a wrench into the world economy and turned the lives of billions of people upside down. It’s called SARS-CoV-2 and is commonly referred to as coronavirus. The disease is COVID-19 (novel coronavirus disease-2019).

Illustration of doctors hecticly running around.

As any intellectual discussion starts in the DCP office, it starts off as a joke. Yes, laughs and giggles were shared, but all of that has changed now. It literally went from a running joke in our office to an order to shelter at home in a couple of weeks.

The coronavirus name is derived from the Latin corona, meaning crown. As an oversimplification, the coronavirus looks like a ball covered with spikes. According to the WHO-China Joint Mission on COVID-19 reported illnesses range from mild to critical. 80% of cases were considered as mild to moderate. 14% were severe, and 6% were critical.

The term mild is misleading. In this case, mild to moderate means supplemental oxygen is not needed. Severe cases require supplemental oxygen and critical cases are defined by respiratory or multi-organ failure and require advance life support. Just this information alone, was enough to terrify me.

Who are the people most at risk of severe illness from this insidious disease? According to the CDC:

  • Older people 65 or older.
  • People of all ages with underlying medical conditions, particularly if not well controlled, including:
    • People with HIV.
    • People with chronic lung disease or moderate to severe asthma.
    • People who have serious heart conditions.
    • People who are immunocompromised.
      • Many conditions can cause a person to be immunocompromised, including cancer treatment, smoking, bone marrow or organ transplantation, immune deficiencies, poorly controlled HIV or AIDS, and prolonged use of corticosteroids and other immune weakening medications.
    • People with severe obesity (body mass index [BMI] of 40 or higher).
    • People with diabetes.
    • People with chronic kidney disease undergoing dialysis.
    • People with liver disease.

And more importantly to me: People who are named Sal. Yes, that is a joke, but that is how I felt when I first read this. So, let’s see I am a kidney transplant recipient (Thanks Dad), taking immunosuppressants in order to prevent rejection of my transplant and have low vision. Clearly, this means I need to take my “shelter in place” tendencies to the next level and take this virus seriously. For a person who is immunocompromised, this virus has the potential to put me in the ICU at least. My tiny family would have to take special precautions in order to keep me safe.

Knowing this, the grown ups in our family, mainly my wife (another joke) and I made plans. Since I depend on the internet for most of my “in real life” interactions I started to “panic” buy things we may need a bit early. In my specific case, the internet provides a way to do things I cannot do in person. For instance, if I walk into a grocery store, it would be next to impossible for me to locate all the items I need in a timely manner. If a website is created with accessibility in mind like Amazon, I can purchase all the items I need via a web interface and have the items delivered to my house. This way, I can shop independently, at any time of the day. In many important ways the internet has become a bridge for many people with disabilities and it made many impossible or difficult tasks possible.

I began stocking up on hand sanitizer, meal replacement drinks, and much needed medications. Naïve me, thought that we can just order all our groceries from Amazon Fresh as usual, but that option became unavailable. Amazon did not have enough processing capacity for all the grocery orders it was receiving, so we realized that we would have to purchase all our groceries and household items in person. My wife became the designated and sole shopper of essential goods. I became the designated at home adult (we have a 6-year-old son), and non-essential goods shopper.

In early March, we decided to start buying any food we can find. You know, canned, frozen, boxed foods which were the types of foods we usually avoid. We also tried to buy toilet paper and cleaning supplies too. At this time everyone else had the same idea and items were limited. I never thought I’d see the day when I could not find toilet paper or a box of Spam at Costco, but it happened in early March. Just a few weeks earlier, we were just living our normal lives walking around Santa Monica without a care in the world, just hanging out. COVID-19 was just something abstract which we just talked about but now it was real.

Now things are different. UCLA moved most of its business operations online – which for me as a person who has low vision is better. Everything that once was presented in the real world is now in a more accessible format through the internet and technology. At least for me, since my assistive technology is depended on the internet and how it works, in many ways the world has become more accessible.

Since we are all required to work online, we all have a common medium. We all basically interact the same way using internet based technology via Zoom, email, digital documents and shared drives. Basically, assistive technology works with these tools and everyone now is forced to work within the same environment. The infinite variables found in the real world have now been reduced to an interface presented in a web browser, which I happen to prefer.

Of course, not all things are bad during the shelter in place order. I get to see my six-year-old son every day. He is growing fast, and I get to see what he is doing in school each day because he is taking classes just a few feet away from me. I get to have three home cooked meals with my lovely wife and son, and we get to talk about the most non-sense things that come to our minds. I get to make a wife laugh at my jokes any part of the day and I get to hear my son say “Daddy” like he things I’m the coolest person on the planet. We get to hold spontaneous dorky dance parties in our living room. I get to reconnect with friends that I haven’t seen in years just to see how they are doing. I have never seen the sky as blue and clear as it is these days. Nature is reclaiming what was once ours, it is just too bad we cannot go outside to enjoy it all.

An illustration of a couple dancing with each other

Honestly, is this what life is supposed to be like? Where being home with the ones you love and spending all your spare time with them. Did we lose ourselves somewhere? Did we loose sight of what is important? Here and now is important and I cherish every moment of it because in a brief moment it all can be gone.

I don’t know how this is going to end, I am certain that this time will pass, but I have no idea how. Someday things will go back to normal and we will return to our normal lives. We will remember the time when our lives were turned upside down by a little coronavirus and how things changed for the better.

 

Originally Posted:  14 April 2020