- About Us
- Advocacy & Media
- White Paper Requests
- All About Change
By Kendra Gottsleben
In the past, I have often wondered if I would be able to successfully work at a job remotely. Would I be able to create productive routines enabling me to get my work done or would it be too distracting working from home? Being that I am very social with my coworkers I was leery that I wouldn’t be able to continue these relationships. Once COVID-19 was detected in South Dakota in the middle of March, my anxiety began to increase. I had heard about the impacts of COVID-19 in the media, and I knew it was only a matter of time that it would reach South Dakota. This was concerning for me as I was diagnosed with the rare disease Mucopolysaccharidosis Type VI (MPS VI) at the age of four years old. This condition affects my heart, lungs, eyes, and other vital organs and makes my body more susceptible to illnesses, especially COVID-19. In the wake of the pandemic I knew there was a chance I would be able to see just how successful I could be with working remotely.
My coworkers and I were eventually forced to work remotely; fortunately, we settled into this arrangement, and I felt immense gratitude towards my boss. Even before our university told all staff and faculty to begin working from home, he came to me and said he wanted me safe and to start working from home. This may seem not like a big deal to some, but for me it is. Having a boss that is aware enough to know their employees’ best interest for their health is something to aspire to. His leadership has been so reassuring for me. I feel incredibly blessed to have him as my current boss, especially trying to navigate uncharted territory during a pandemic. Leadership can make or break an organization, and he has it down. With him at the helm I haven’t had to stress about my job during COVID-19 like so many others in society have.
Dealing with the emotions surrounding the possibility of contracting COVID-19 can be another stressor. I have been dealing with them by saying prayers and staying connected with others who are in the rare disease and disability space. This can range from sharing how important it is for everyone to wear masks, social distance and stay home if one feels sick. This is not just vital for people with rare diseases and disabilities or the elderly, it is essential for all of humanity. I am trying to also not become so fearful that it inhibits me from staying positive for myself and others. I do not want to lose myself and my outlook on life because of the pandemic, but I am realistic and know that if I were to come down with COVID-19 I would most likely die.
In recent days, I have found myself a little disheartened as I have seen people starting to gather in large groups once again as if there is not still a pandemic occurring in our world. I totally understand wanting to be having fun with friends and family at typical summer activities and events, but those are danger zones in my opinion. So, I have chosen to reduce my chances in contracting COVID-19 by not participating in such danger zones. I realize it is up to me and me alone to keep myself safe, so I remain at home. This weighs even more heavily on me now as I prepare for a heart surgery. Undergoing such a procedure during a pandemic isn’t my ideal choice. A heart surgery alone has its risks, and adding COVID-19 doesn’t help any, but the operation must be done.
It can be challenging when I hear people say, “Oh yea I forgot about the whole COVID thing still going on!” “We all just need to get it and move on!” and “COVID is totally made up!” There is no guarantee that any of us, no matter our age, race, ethnicity or gender will be able to survive the illness. As I sit at home, those comments sometimes cut through me like a slap in the face. However, I understand that others have the right to their opinion, and I would never deny them that right. So, I am focusing on seeing positives that could possibly come out of the pandemic.
When I look towards the future, I like to be optimistic and see this pandemic possibly shifting our society in ways that perhaps benefit the rare disease and disability community. For example, many of us are or had been working from home, so businesses and organizations are seeing or saw how it is conceivable to have remote employees. This could allow for additional people with rare diseases or disabilities to become employed. Businesses and organizations were forced to adapt for all of their employees, and hopefully they will continue the creativity when considering new applicants.
Also, I hope the delivery or curbside options that were implemented by stores and restaurants will continue well after the pandemic. Such expansions help all of society currently, but they are especially beneficial for people who are unable to drive or lack access to reliable transportation. Likewise, I am hopeful we, as a human race, can become more kind and giving — taking time to actually talk and listen to one another when we walk or roll by.
I believe we will come out of this stronger. Well, that is my hope anyway.
To stay up to date on our most recent advocacy efforts, events and exciting developments, subscribe to our newsletter and blog!