When I was a little girl, I looked up at the sky every night to search for the brightest star. When I found it, I closed my eyes tight and made the same wish in my head, “Find a cure for my mom.”
I vividly remember repeating it as fast as I could when there was a shooting star, as I believed they had more power in granting wishes.
I never wished for a Barbie doll, a pet or a trip to Disneyland. I just wanted Behcet’s Disease to leave my mom’s body and our family.
This rare, incurable, autoimmune illness had incredible power over us and I wanted to destroy it with my wishful thinking.
As you can guess, it never came true.
However, other unexpected wishes did.
Resiliency, Empathy and Hope.
These aren’t your typical wishes, but they serve a purpose in my life. They guided me through my childhood into adulthood, viewing things with a different perspective.
I remember how angry I would get when I heard peers making fun of someone due to their appearance or struggle with a task. I could feel the pain from the insults and I would speak up. They needed to be aware of an invisible disease.
I wanted people to feel included and accepted as they are.
Often times, I played a care-taking role, retrieving ice packs, medication and a thermometer for my mom. The flare-ups were harsh and restricted her to a dark bedroom while waiting in agony for the pain to diminish.
Those were nights that I searched for a shooting star.
I became very comfortable in a hospital setting and I loved to rummage through their storage cabinets and take whatever I was allowed to, ID bracelets, basins, gauze, tape and of course a gown. I would bring it home and play doctor, foreshadow to my career.
These unexpected wishes have fueled my passion in working with others. I understand how an illness impacts the whole family, as it is never an individualized disease. I know there are always setbacks with an additional diagnosis, complications, and waiting for an FDA approved treatment. I know that people living with chronic illness don’t want to have a pity party or talk about their health, they just want to live a normal life, even though their normal is a bit different. I have a genuine admiration for my mom and other’s that struggle with life’s challenges and still find the courage to push forward.
I’m now 35 and still making wishes.
The Spoon Theory
My Connection to rare Disease Day
How a Rare Disease Changed My Life