On Thursday, March 12, my laboratory at Columbia University had its last in-person meeting — only days before social distancing measures were to be put in place and research was to be “ramped down.” I recall this moment so vividly because it was my turn to present the experimental progress I had made over the past few months. I got up to the podium and said, “Thank you all for being here and welcome to the last lab meeting for the year.” The lab laughed for a brief moment, a relief in times of despair that would follow.
I am now back in the lab during phase two “ramp up,” and through times of struggle, I now write to reflect on the events that transpired and sparked a movement in my community. After giving my lab meeting and shutting down my research efforts, I returned to New Jersey to check up on my mom, aunt, and brother who had been in voluntary quarantine as a preemptive measure. You see, we feared my brother would contract and spread this virus if he continued to be outside — it wasn’t a matter of if but when.
My eldest brother, Miguel, was born on November 27th, 1979 in Quito, Ecuador. At 1 pound, 12 ounces my mother was told he would not live beyond the year. This was further complicated by ongoing seizures he suffered during adolescence. In the end, my brother not only survived but thrived. Although his early life adversity left him challenged both physically and mentally, he never let that get in his way. My family emigrated to the US in 1996, and although Miguel was hesitant at first about leaving all his friends behind, it did not take long for him to make new ones. This is one of the legacies my brother leaves behind and the solution to a question I have received regarding him time and time again. If he’s mentally challenged, how can he be so social and outgoing? I shrugged it off and just let Miguel do the talking. Despite being diagnosed with the intelligence of a 7-year-old, he was a gregarious man.
Despite his social nature, what others did not usually see was my brothers’ need for constant care. Miguel suffered from poor hygiene and obsessive behaviors. He would continuously put his hand in his mouth, eat with his hands - as he was uncoordinated with utensils - and rarely brushed his teeth, which by the age of 41 left him with but a few remaining. He would throw tantrums, was displeased by rules, and most of all disliked health check-ups. But as he would say, “Yo soy hombre” … “I am a man” — so prior to a doctor’s appointment, he would request the same nurse aides. They had a way of calming Miguel. And on his way out he would ask to give each nurse a kiss on the cheek and make sure that he had a lollipop on the way out. His presence was felt and he knew it.
When I returned home on March 16th to see my brother, mom, and aunt, I was greeted with warm hugs and by my brother’s inquisitive nature. Why can’t I go outside? We explained to him that it was dangerous now but that we would be able to go back to our normal lives soon. We knew this wouldn’t be the case, but it was the only way for us to keep him calm. He sorely missed his friends and the local supermarket where he passed time by bagging groceries and conversing with the locals who adored him.
Unfortunately, COVID-19 had reached my hometown of Elizabeth, NJ by storm. My extended family and friends had symptoms though infection was yet to be confirmed due to a lack of testing. On March 29th, I myself had a rapidly rising fever, headache, and sense of unease. These symptoms lasted for three days. I soon realized that I had to get tested if not for me, then for those I interacted with. Unfortunately, I was not granted a referral needed for a drive-thru test offered by the state at the time.
If I couldn’t get tested, I decided I would restrict my contact with family. From my bedroom I could hear the cacophony of coughing and wheezing coming from each bedroom. These symptoms progressed over a week period for my brother, mother, and aunt and I decided I had to break my quarantine — to ease the burden of care.
We were granted a referral to have my brother tested on April 2nd. Miguel claimed he did not have this “so-called virus” and that he was fine, even as his coughing demonstrated the opposite. After 2 hours in line at the testing center, the nurse practitioner used a nasal swab to perform the test but my brother resisted. In the roar of cars honking, efforts of an eager nurse, and me begging him to just give it a try he finally conceded only to jerk his head away as soon as he felt the swab go too deep. I knew that it was not properly performed and I begged my brother to try again but both he and the practitioner refused. We were told these would make do. Miguel continued to cough and wheeze and presented bowel difficulties and no appetite. We called the testing center for results but were told that they did not have them yet and to continue to wait.
At this point, time was of the essence. His physician recommended JFK hospital in Edison, NJ. On April 9th we took him. Miguel resisted, crying and begging to not go to the hospital, but eventually he conceded. Upon entering the emergency room, my brother felt the anxiety and began to throw a tantrum, and although we tried to make sure his mouth was covered he was reluctant. We were soon escorted to a private room where the raucous behavior could be contained. We patiently and eagerly waited for someone to look in on him. Doctors performed a chest x-ray and another COVID-19 test. After 12 hours we were sent home. I couldn’t believe it! My brother was just as sick, if not more than some of the patients there. Nevertheless, we complied and put trust in the system. I knew that my brother’s difficulty with care was not to be ruled out.
After battling one of the toughest weekends of our lives, my mother and aunt slowly recovered but my brother’s health continued to worsen. We called the hospital on the following Wednesday and were told that he was indeed COVID-19 positive and that we would receive medication later that day.
I implored my brother to go to the hospital one more time — “it won’t be so bad, you’ll see!” That was met with another tantrum. Later that day we received Miguel’s medication. My mother gave him his first dose of hydroxychloroquine and he immediately complained of stomach pain. I asked once more: “let’s go to the hospital, please!” He refused and said he’d rest.
At 9 pm, I peered into my brother’s room and saw him gasping for air in his sleep, I told my mom that we had to go to the hospital that instant, even if he refused. We woke him and got dressed. I told him, “Get on my back Miguel, I’ll carry you to the car.” Among his crying and shouting he refused: “I am a man.” We helped him walk toward the car, engine already running, but Miguel collapsed in my arms. He passed away that night.
This is a brief story of my brother Miguel and our family’s battle with COVID-19. Treatment for Miguel was never anything out of the ordinary for us, we had always faced certain difficulties that come with the medical needs of a person with special needs — the tantrums, his choosiness about who will treat him, and, along with it, the animated interactions with his favorite doctors and nurses but an inability to adapt to unfamiliar ones. The events of COVID-19 revealed another layer to the challenges required in treating patients with special needs such as Miguel. In the midst of chaos and the unknown, I do not blame medical professionals but I will always know that things could have transpired differently.
The outpouring from the community was nothing short of inspiring. People all over town dropped off flowers, offered financial support, and words of encouragement about how Miguel made them smile. I, unexpectedly, found a core of support from the Columbia community. My professors, doctoral advisors, and program directors came to our aid. My brother is no longer with us but his legacy will endure by those he touched and funds collected in his honor through a massively successful GoFundMe campaign: Miguel Angél Mision.
These events highlight how difficult it can normally be to provide medical treatment for patients with special needs. In the time of coronavirus, this difficulty is amplified, which pinpoints a hole in our medical system — how to properly deal and work with special needs children and adults. How that comes about is a matter of debate and thought, but this discussion must nevertheless be had. I am eager to contribute to those discussions on behalf of Miguel and the millions of families also caring for their loved ones with special needs.
This piece was originally published on Medium. To read the original piece, find it here.
