With COVID-19 vaccinations being an intensifying hot-button issue, now is a good time to share my perspective on the topic as someone who would be considered at higher risk for complications from the virus due to underlying health conditions. 

Reduced lung function is a signature of Duchene muscular dystrophy (DMD), which has concerned me during the pandemic because of COVID’s respiratory symptoms. I have some assurance now since I’m fully vaccinated with Pfizer, including a booster. Despite this, I find a few things alarming still.

Early on during the pandemic crisis, when the vaccine wasn’t available, the outside world became increasingly frightening and foreign to me. My mother is one of my caregivers, and she is a high school English teacher. I see her as a front-line worker since the transmission rate of the virus has been rampant in some schools among students and staff. This brought us both a lot of anxiety with the possibility of her bringing COVID into our home. My father spends more time with me at home during the day, but we still had similar fears of him picking it up on a simple trip to the grocery store.

Continue Reading

For months I feared for my life and the catastrophic scenario of dying alone in an Intensive Care Unit ( ICU) This of course made quarantining my safest option. I eventually grew so bored of this that I would create a daily meme marking how many days I had been inside. For example, on day 60, I used the logo of the television show about people volunteering to stay in jail called “60 Days In.” I not only faced boredom but also loneliness from losing my in-person social life. As all of this flooded my thoughts, it was easy to get depressed and hopeless.

Then came the news that vaccines would soon be readily available. This was like lifting the weight of a heavy shoe pressed on my chest. I got my second dose of Pfizer in February and a booster this October. There was finally a glimmer of hope that I could have some normalcy in my life again. However, that spark has slightly faded for me.

More From Alan Hieber: When Medicine is Needed for Medicine in DMD Treatment

I believe you do have a right to decline to receive the vaccine. However, when someone is doing research to base this decision on, there are a few indirect effects I hope they are aware of and have considered. Having this shot has given me some relief from what was a  dark place, given the fear and mental dysfunction I experienced. But I also continue to have a sense that precious time was taken from me given the fragility of health for DMD patients. 

From my perspective, when people decide not to be vaccinated to limit the spread of COVID, they are increasing the risk to others, especially those with pre-existing conditions. 

Additionally, there is a way of not electing to get the vaccine that could have a negative impact on my care as a patient. Since vaccination rates have steadily increased, the data have shown that well over 90 percent of ICU COVID patients nationwide are unvaccinated. 

At some hospitals, the spike in the size of these wards has diminished the care for other types of patients. I’ve heard the horror stories of people dying from other conditions shorty after being denied space in the ICU.

Living with DMD presents a variety of health emergencies that can be fatal, and I’d like the chance to be treated for at least some of them. For instance, my compromised lungs make severe pneumonia a real possibility for me, especially when I have a cold. I believe that there have been several instances like this where I was only spared a stay at a hospital thanks to my assistive medical equipment for breathing difficulties. Since I’m hanging on this thread where my health is threatened, I’m anxious about not having space in an ICU when I may dearly need it.

Based on what I’ve presented above, it’s probably fairly obvious that I’m a proponent of getting the COVID vaccine. Again, I believe someone has a right to decide if the vaccine goes into their body or not. I’d just like people to consider that their likely avoidable fight to breathe could contribute to someone like me taking their last breath.