COVID and Being Medically Fragile with a Disability

Hi, my name is Meishy and I live at home with my mom, Cheryl. She is helping me write
this because I am a quadriplegic and unable to write and dysarthric and unable to speak. However, I want to tell you about my experiences of surviving in the world of Covid 19. I know all of you are having to survive this as well, but I am on a ventilator 24 hours a day, so if I get this virus, I have a 99% chance of dying, so that is scary to me. I want to tell you about all the things people have done to try to protect me and keep me safe so you know what people can do to help keep you safe too.

I have not left my room since February 18 of last year when I went to see Dr. Tolley at the pain clinic at Riley Hospital. That was right before Covid burst on the scene. In March I was told by my doctors that I needed to stay in my house and not leave for any reason; that my mom, who is a nurse, and my nurses would need to take care of any problems at home. The doctors made sure that I had all the medications that I needed (antibiotics, meds to thin my mucus, etc.) were on hand so they could be started if I needed them so I did not have to make a trip to the emergency room. I am a palliative care patient because I no longer have any veins that are good enough for IVs, so all my antibiotics must go through my stomach tube.
I have needed these medications a couple of times during my isolation period, and it has been wonderful to not have to go to the hospital to get them. My doctors have also been great about doing all my doctor visits via virtual visits. Mom holds the phone up and we talk with the doctor about what has been happening with me and we are able to do our appointments that way. It has been amazingly effective.
Another important thing is that the only people that I have seen since I left the house are my mom, my two nurses, Steve and Shannon, my therapist Jaime, and my aunt Susan. All of them do things like wearing masks and gloves when they get close to me if they are not feeling well. Mom even had to take care of me in November when she had Covid and managed to keep me from getting sick. She wore her mask, her gloves, and washed her hands a lot. She also kept herself in the other room except when I needed something bad, just so she could keep me safe. I did not get sick at all.
I cannot say it has not been a little lonely, but I have my iPad and my DVDs to keep me busy and happy. Those are the things that I really enjoy. I plan to keep on doing what I am doing for as long as I need to do it, and I hope you will all do the same. Please remember that masks and social distancing do work. I am proof of that and stay safe.

About the Author:

Meishy was born in Philadelphia and lived in a foster home there until she met her adoptive mom. They flew home to be a family on 9/20/2001, right after the planes started again. Meishy attended Shelbyville High School. She loves all things Disney, but especially the princesses. She spends her days watching movies and surfing the internet.