Today I received a text message from my mom, that she felt like she’s finally found a purpose since being diagnosed with Alopecia; after reading her message I was excited to share with Josh how far she has come. I remember finding out about her hair falling out, the sadness and lack of comfort in completing daily task like grocery shopping and work. A woman’s hair plays a large role in shaping her identity, especially after living thirty years without having to think twice about it. She initially tried to stop leaving the house; not liking her appearance and feeling alien to society– she begun to isolate herself. Additionally, she felt people stare and in their eyes she’d imagine disgust. The disorder was unbearable. Losing places to turn, she found family couldn’t be there for her in the way that she needed; offerings and gestures that might apparently veil or comfort her with the disorder were more humiliating and only eased the mind of the one whose effort it was to protect her. Unknowingly, family and friends would cause further discomfort by purchasing wigs and giving gentle reminders to wear a hat before opening the door.
She didn’t choose this.
Just before bed I receive a call from my mom, she continues, telling me her purpose is to share her courage. In the passing of time she’s been able to gain a stronger sense of self and now feels little need to hide. When in public she’s sometimes approached by women who think she’s a cancer patient, they admire the strength they see, realizing her beauty, it’s able to be reflected in them.
Mom tells me she learned a lot from me growing up with epilepsy–I don’t feel like I did anything.. But that’s just it, I didn’t– I never allowed it to take over my life, to shape what I can and cannot do. She told me my determination can be shared with others who are epileptic– it shows they can do whatever they want in spite of their diagnosis. I smile as I hold the phone and enjoy a gentle breeze from the mountains. I deflect the attention, “but mine is more hidden, people could go on never knowing that I’m epileptic, while I feel yours is a lot tougher, it’s right there in everyone’s face. I am very proud of you.” As those words flowed from my mouth my mind realizes this is a lot like what people of the LGBTQ and other marginal groups have to go through.
“If people like me, they like me, if they don’t, they don’t, but I’m going to be myself,” Mom says bringing my attention back to her. That line is one that anybody could appreciate.