During the height of COVID restrictions, we all learned how to survive by changing our daily routines. That encompassed how we work, shop, educate ourselves, and communicate with those around us. In the digital communications age, getting relevant information is just a few keystrokes away. That may be obvious, but it can’t be emphasized enough.

I got my first computer when I was 13 and I mostly used it for homework, music, and games. After high school, when I became more dependent on a wheelchair, I still wasn’t near close to where I am now with my computer technology knowledge. So let me just fast forward to getting my first laptop when I got to experience virtual conversations as I entered the world of Skype. Then later I got my first iPhone, which completely advanced my way of communicating with others.

Before I started my biweekly infusion to treat my Pompe disease, I was deteriorating fast, my body was getting so weak and my breathing was becoming a problem as well. So I was forced to do things at home with the help of my laptop and phone. After getting accepted into Ursuline College right after high school, I became ill and ended up earning my degree online.


Continue Reading

I couldn’t live on campus as I planned. After college, I wrote and published a few books, but because I couldn’t physically write anymore I wrote them on my phone. Then during that time, I was introduced to online shopping. During that time, shopping for clothes or groceries was a definite struggle. I started doing everything on my phone.

I’ve been told that I spend too much time on my phone. I won’t deny that because I need it to help me with my daily life, to make things easier for me. Today, I am stronger and healthier, and I get out more because technology is so amazing and I benefit from it.

To my phone waking me up with its alarm clock, to the daily reminder notifications, then logging online into social media where I can get an idea of how friends and family are doing. Then using my phone to open an app where I can schedule transportation to go somewhere and pay for it on my phone. And when I’m out doing whatever, losing track of time I get a reminder notification to remind me to change my battery on my BiPAP machine. 

Oh, and I have to mention how I so love using AirPods, those cordless earphones that have voice control because, with my Pompe, I can’t lift my phone to my ear.

Read more about therapies for Pompe disease

I know that everyone benefits from technology and social media, but for me, and others like me, it’s different because we need it; it’s essential in our lives. Yes, we can survive without it as we did before, but it makes our lives so much easier. I have met some amazing people in my life that live in different states and countries just by using social media.

It’s just better for me when I can do things in the comfort of my home. As such, I am patiently waiting for flying cars, or some kind of machine that zaps us to a destination. Wishful thinking? Of course, but my point is we depend on technology in different ways than others, and I think my friends and family, and many rare disease patients would agree that we love how it helps us and we look forward to the future of it.