Neurofibromatosis survivor: Please wear a mask to prevent COVID-19

As a neurofibromatosis survivor, I’m already in a high-risk group for contracting the coronavirus (COVID-19). So, even though I’ve never had cancer, I’ve been under strict orders to stay at home for months.

A surgery I had 20 years ago to remove some large tumors from my diaphragm essentially left me with only one functional lung. That means I already get out of breath easily. And sometimes, I have trouble feeling like I’m getting enough air. So, I have to be extra careful, and take all of the advised precautions possible.

That’s why I’ve started conducting some of my medical appointments at MD Anderson virtually. And, except for the occasional curbside food pick-up, I haven’t been outside of my house since March.

Despite these efforts, I know it’s still possible for me to get COVID-19. So, when I hear about other people refusing to wear masks, socially distance or take any other precautions, it’s not just frustrating — it feels personal.

What I miss most during the COVID-19 pandemic: in-person interactions

COVID-19 has already changed so much about my everyday life.

As a professor at the University of Houston, I’d normally be in my office or my classroom on campus throughout the week. Other times, I’d be giving a guest lecture somewhere or having lunch with a friend or a student. Now, all of those activities have moved to video or audio platforms.

As a writer, I’m accustomed to doing a great deal of solitary work, but I still really miss those in-person interactions. The classroom environment was particularly exciting.

But, until it’s deemed safe by medical experts for me to resume my normal activities, I plan to keep working from home, social distancing and following up with my physicians virtually. Because I don’t need any additional medical problems. I don’t want to endanger anyone else. And I want to be there for my friends and family.

Doing my best to practice acceptance

I’ve been doing my best to accept the current situation. First, because I know there’s nothing I can do to change it, and second, because I know it’s not going away anytime soon.

But I still want everyone who is able to wear a mask to do so.

Because I already know first-hand what it’s like to have difficulty breathing. I know what it’s like to face new medical treatments. And I know what it’s like to have long-term damage to the body I live in.

But most of all, I know what it's like to want to live.

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