Extraordinary Estie: An Ordinary Day in a Special Life
Estie Johnson says these words, and also lives by them: Be your best self and live your life to the fullest because you never know what you could achieve. The sky is the limit!
A recent high school graduate, Johnson worked as an advocate for people with disabilities before the pandemic.
“I have a muscle disease called congenital myopathy and this is as far as the doctors can tell. It’s still unknown to this day what muscle disease I actually have,” says Johnson.
“Congenital myopathy is a disease where most of my muscles are weak. My legs are too weak to be able to walk and this is why I’m confined to a wheelchair. My arms and hands are also weak, and I have a weak back which results in scoliosis, where my spine curves due to weak muscle tone.”
Johnson’s birth parents are from China. They put her up for adoption when she was a baby because they wanted her to receive better healthcare in the U.S.
“I was born very floppy and the doctors didn’t know what was wrong with me. … At three months [old], I was adopted by a very large family and when I was six months, my lungs collapsed. The doctors told my family that I would have no quality of life and they should let me go. I received a tracheostomy and went home from the hospital four months later on a home ventilator which I still use to this day,” says Johnson.
The disease affects her lungs and at night, she receives support from the ventilator. The trach she has allows her freedom during the day.
Johnson says, “I have a few tools that help me with my daily life. My wheelchair enables me to be more active throughout the day, and I’m not confined to my room 24/7. I also rely on nursing care so I can be more active and I can attend family functions. Just because I have a muscle disease and I’m on a vent doesn’t mean I’m confined to a hospital bed and can’t do anything and go places. It just means I have to have these things to help me live a quality of life that I want.”
Johnson enjoys going outdoors, hanging out with friends and family, singing and diamond art. “Diamond art is a project where you put beads on a piece of canvas with a picture on it and the beads go on one by one. It’s really good fine motor skills and it takes a lot of patience,” says Johnson of the art that she sells on her Facebook page “Estie’s Delightful Diamond Paintings.”
“In the future I dream of being … [an] advocate and a public speaker and I can see myself impacting people’s lives in a positive way,” says Johnson.
“I wish people knew that I’m just like anyone else. I like doing outdoor activities, spending time with family, expressing my feelings, thoughts and opinions. I wish people knew that just because I have a disability doesn’t mean I’m not able to do things that I want to do just like anyone else.”
For Younger Kids: Do not let your disability stop you from doing the things you want and pursuing your dreams whether it’d be working as a waiter at a restaurant or being an air traffic controller. The possibilities could be endless if you don’t let your disability set you back.
For Parents: Do not baby [your kids], and let them do as much as they can for themselves so they can be more independent.