My mom has dermatomyositis, and she’s forcing me to type this. My mom was diagnosed in June of 2016, right after the end of my freshman year. Although she initially seemed to just be sick it was something that was going to impact the rest of my years at high school.
By my sophomore year, the disorder started to truly take form. It took my mother out of work and into the hospital which ended a paycheck coming into the house of 3 kids including me and my older sister and brother. As a high schooler with so much going on, it was always hard seeing other kids going away for spring break and stuff like that because my family couldn’t financially or physically in my mother’s case. With my father getting farther apart and also being out of work, less money was coming in to support us and it just got harder and harder.
I initially thought that my mother’s illness was going to be a barrier from living a comfortable or at least consistent life. This and issues with my father combined led me into a depression that would only clear up after reconnecting with friends and lots of therapy. That summer I ended up hearing about a program at the local EMS department. With my mom’s DM going out of control and her being in and out of the hospital I felt like doing this would make me feel at least a little more in control and maybe I’d be able to help my mom more.
There is no cure to the disease, but I am finding a cure to a better life; you can’t hide something that is in the open, you can only fight it.
The program has blossomed into a promising and consistent career in the medical field including support and free education. When I felt alone or stressed at home, going to the stations gave me a different world to be in for a few hours, helping others while building bonds with a second family. I became a part of that family and it has kept me looking forward ever since. Although my siblings tell me everything is fine, I know it’s not. I’m with my mother everyday while they all live away from home. I know what happens in family court; I’ve been to the hospital and doctors with her, there’s no way to make it look good. As much as I am told to have hope or pray I know this government is not gonna do anything about it. There is no cure to the disease, but I am finding a cure to a better life; you can’t hide something that is in the open, you can only fight it.
Awesome article! Myositis does effect all those living with the patient. So glad you have found an outlet!
I hate that he has to be my caregiver, but he does a really good job 💙💙 Caregivers go through SO much, I hope more share their stories.