TQ ALAGILLE SYNDROME (CELEBRATING SUFFERING)

“…and here are a few examples out of many…

When I was old enough to understand that I was born with Alagille Syndrome (multiple medical conditions). It wasn’t all sunshines and butterflies.
12 years ago, when I was mentally and emotionally in the darkest place of my life. Black was my brightest colour. Hurt was my only lover.
When I was in the recovery room after right hip replacement surgery. It felt like someone had just bashed up my entire right leg. I had no joy.
When I found out for the first time in my life that my right eye is blind. It wasn’t blissful. It was frightful.
And when I found out just last month that my left eye is blind now. I did not feel blessed. I did not feel like celebrating.

So, why am I standing here tonight with a speech titled, Celebrating Suffering?

You see, over the decades (33 years) pain & suffering has taught me something unexpected. And I want to share it with you tonight…”

This article was written by Nikki Lee

Nikki Lee is a self-published author of Alagille Girl, named after her rare genetic disorder, Alagille Syndrome. For Nikki, Alagille Syndrome affects her liver, her heart, her bones, vision, hearing, learning pace, and physical development.