You can’t fight myasthenia gravis alone. A doctor once told me, “myasthenia is a family disease.” It’s true. This illness impacts not just the one who was diagnosed, but those who love and surround the diagnosed. There has been one person who has been quite literally by my side every step of the way. That is my mom. For today’s Feature Friday I decided to recognize my mom in honor of Mother’s Day this Sunday.
My mom’s name is Jeanine, but to me, she is Saint Jeanine (or Neanie as we all call her). In the chronic illness world, we tend to focus on patients, but the caregivers are the unsung heroes in this strange community we find ourselves in. If you know my mom, you know she will do quite literally anything to ensure MG plays a minimal role in my life. If she could take it away, I know she would.
My mom and I probably spend more time together than the average mother/daughter duo, and I wouldn’t change it for the world. She’s my sidekick, my confidant, my role model, my best friend, my saving grace. Aside from all the practical things she helps me with i.e. laundry, grocery shopping, cleaning my apartment, driving me from a to b, etc., it’s the little things she does that make me realize, “I’m going to be okay.”
It’s the car rides she takes me on when I need some fresh air after laying on the couch all day burdened by fatigue. It’s the conversations we have as she picks up the clothes off my floor or puts my dishes away because I’m too weak to accomplish these tasks. It’s the laughs we share, you know; the type where no sound is even coming out and tears are streaming down your face. It’s the moments she sits with me and is able to read whether I need a hug, advice, or just someone to listen when MG is too much to bear.
I know there are people out there who don’t have a mother like I do, but I hope that those living with MG find that person that they can count on; to be there for them and to love them unconditionally. A few years ago, I wrote a love letter to my mom, expressing how MG has helped us have a closer relationship. You can find it here: https://themighty.com/2017/05/chronic-illness-and-my-relationship-with-mom/
Whether it’s your mom, your sibling, your friend, your neighbor, tell them you love them and how grateful you are for their choice to fight this disease with you.
The following blog post was written by Meridith O'Connor, St. Louis Program Coordinator for the Myasthenia Gravis Association.