Written By: Emily Flynn, Ability Tools Program Coordinator
Although Mother’s Day has just passed, I can’t help but have my mom on my mind lately. See, I have one of those moms who was born to be a mom. She puts everyone’s needs before hers, she’s got a poker face like you wouldn’t believe; and she is beyond thoughtful. I know everyone says this, but I truly have the best mom. On top of all of this my mom has a chronic, genetic, invisible, painful disorder called Ehlers-Danlos Syndrome (EDS).
EDS has 13 subtypes and a variant of symptoms that affect each person differently, this makes it very difficult to diagnose. This is why my mother wasn’t diagnosed until about 8 years ago, even though symptoms started when she was a child. To learn more about EDS and the types, please visit The Ehlers- Danlos Society website.
As I have learned from my mother, “It is not your struggle and obstacles that define you, but the way you handle them and move past them.” My mother is never one to complain about her chronic joint pain, lack of sleep, and frequent joint dislocations– even after having 16 orthopedic surgeries in her life. She has never let this define her as a person or a mother. (She prefers titles like “Mom”, “Sensei” and “Mrs. Flynn.”)
Through all of these obstacles, my mother has raised a family, become a third degree black belt, and has taught students from kindergarten to college.
One time my mom was at a physical therapy appointment for her shoulder. Her long time physical therapist (PT) lifted her arm for an exercise and noticed bruises on her forearm and underarm area and quietly asked, “Is everything okay at home?”
When my mom saw what he was referring to, she burst out laughing. She explained that she had been training for her 2nd degree black belt test, and earlier that week they had been working on knife self-defense techniques which involves
blocking with the forearm, and therefore caused the bruising.
But don’t get confused–my mom didn’t achieve all of these things without a little help. Before even working in the assistive technology (AT) field I was exposed to it. My mother has been using AT for a good portion of her life. Because of the instability in her knee she has a custom-made, specialized, hinged knee brace that she wears all day, every day. Also with the weakness in her hands due to joint pain, she uses a multi-use opening tool for bottles, cans, and jars in the kitchen. She also loves her standing mixer; she loves to bake and has always struggled with mixing because of the rotation of the shoulder joint and the pain in her hands.
This is ultimately a tribute to my mom, and how she has had a huge part in shaping me into the person I am today. I work in a field where I need to care, empathize and problem solve every day, and I don’t think I would be able to be so successful in this field without her influence. She also is a wonderful role model. I myself was also diagnosed with EDS about 4 years ago and she has been my biggest support. Thank you Mom!