Maya Bulmer was thrust into the role of caregiver at a young age. Like many seniors in high school, Maya spent the 2018-2019 school year filling out college applications, readying for the next chapter in her life.
“I had it all planned out, I had full tuition, I had something that I wanted to do in a career that I was interested in,” Maya said when we sat down to talk earlier this year. Maya’s mother, Elizabeth McCormick, is the director of clinical education programs at the University of Tulsa
College of Law, where she founded the Immigrants Rights Project. In January 2019, Elizabeth was diagnosed with ALS.
“It's just hard to make a decision about the rest of your life when you don't really know what's going to happen in a year from now, because things with this disease change so often,” Maya said.
Maya is 18 years old and lives in Tulsa with her parents and two younger brothers.
Until her mother was diagnosed, Maya knew little about ALS although she had taken the ALS Ice Bucket Challenge and watched a documentary about Lou Gehrig with her dad.
“I just knew that it was something that affects the way that you move and that how basically it's going to be what kills you,” she said.
Maya said the reality of ALS really hit home when they picked up her mom’s wheelchair.
“Even though that was only maybe one or two months after the diagnosis, it was still a big thing to think about, because it's like, ‘Wow, this is actually happening. This is something that's really going to affect the way that we live.’"
Maya said she worries about the effect her mom’s ALS will have on her younger brothers.
“They're only 13 and 15. To think that this is something that is going to affect their relationship like this is -- they've only been around for so long and they haven't gotten to experience life with my mom as long as I have. That has to definitely be something that they have to deal with.”
Maya says she is lucky to have been able to celebrate her high school graduation and 18th birthday with her mom – rites of passages she hopes her younger brothers get to experience as a family.
She also says ALS has changed her perspective.
“This disease has challenged me to think today is what we have. We don't know about tomorrow. We don't know about a year from now, three years from now, so I just want to focus on being happy right now with my family.”
She reflected on a memory from the week before she learned of Elizabeth’s diagnosis.
“I remember the week before Mom told us that she had this diagnosis. Her and my dad both knew, but they hadn't told us. We went out and we had a nice day riding on electric scooters downtown, enjoying the weather, doing things that we know that probably in a couple of months we weren't going to be able to do, and just enjoying that time, like that happiness that we had together,” she said.