Advocacy: The bittersweet double-edged sword of a nonprofit run by patients and caregivers.

February 21, 2018

A bed of roses...but there were thorns.

Before this monster entered my life, the stage was set, but the red-velvet curtains remained closed. Plans for a fantastic life were ahead of me. I shared a beautiful home with (Ian) my best friend, life partner, and now my Vice President and spouse. We had amazing careers and financial stability way beyond what either one of us ever imagined. We had the fence as well, but it wasn't the white-picket kind. Nonetheless, we had that damned fence and we earned it. Neither of us was born into money; we fought to climb that corporate ladder, and we eventually succeeded.

Ian is black, I am white, and we were a gay couple living in a world that wasn't ready to see or accept either of the two. We lived in a gorgeous development, however, within the shadows of its beauty, lived people consumed by racism and bigotry. Nevertheless, we held our heads high and remained proud of what we had, and who we were.

 

Say goodbye to the dreams...

 

Throughout the years, all I yearned for was to write horror novels and direct the scariest horror films ever shown on the big screen. But all that changed - all of it in a blink of an eye. In 2009, the monster knocked on our door, and I had no choice but to allow it into our home. It wasn't until years later that I realized that the monster had already made its way inside. It just took awhile for it to show its face, and when it did, I lost my face in the process. Hindsight is wickedly bizarre because I clearly saw that the monster found its way into the homes of my family as well. I remember it so distinctly when we lost it all - the money, our house, our dreams, and our aspirations. The monster took it all away, except for our relationship. However, IT tried relentlessly to destroy the only thing we had left. After almost twenty-four years, our relationship is still intact. We continue to fight for it each day knowing that the monster seeks to destroy it. 

 

The birth of advocacy...it came with labor pains.