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.

 

There was only one choice for me at that time. I was about to become an advocate for Huntington's disease. I can remember those days when social media was in its infancy. At that time I was living on a social security income and with a terminal diagnosis. This immediately became the new norm in our lives. I quickly learned that being an advocate came with consequences. People were not ready for my unorthodox approach towards advocacy. On many occasions, I felt like an alien among my own community. I came on the scene expecting everyone to be as ready as I was to expose the monster.  Let's take it on like a bull in a china shop! I won't go into the gruesome details. However, most, if not all of you, may remember. For those of you who weren't around at that time, please wait for the book to be published. You'll want to read it!

 

It's mine...no, it's mine...

Advocacy in its purest form underscores the pleading for, and support of, a cause. Yet, once I began advocating for Huntington's disease, I saw the nature of the beast. Firsthand, I witnessed exclusion rather than inclusion. Organizations who prided themselves on their mission statements made it plain to see that their choice was to "opt-out" of business relationships and cooperative partnerships which (at that time) could have resulted in unity and greatness. Back then, we could have been stronger together. However, they continue to turn away from the very community for which they claim to serve. I observed lines which were purposely drawn in the sand, and the bold sub-grouping and oustings, which irrefutability hurt so many. I read the painful threads and posts...the lies and the damning words...the judgments...the viciousness...the blocking and removal of community members from groups. Sadly, I became consumed by this behavior and even took part in some of the drama because it angered me to my core. However, after many months, it was time to make a change. It was time to find my face, and in the process, help others find theirs.

 

Let's all get under the same umbrella...

 

In 2010, there was a group of us, twelve to be exact, who came together under an organizational umbrella. We made serious strides in advocacy, education, and resources. We paved a runway for which our movement was set to take off. For a few years we leaned forward and raised the bar for advocacy.  We created magic that didn't exist back then - our special magic. Sadly, the umbrella failed, and the storm had dissolved an extraordinary plan for the twelve of us. However, our old friend hindsight continued to provide us with wisdom - a rainbow is not the only beautiful result of a major thunderstorm.  Life went on and peace was eventually made. From the ashes came hope, and the birth of nonprofit organizations created for the people, by the people. 

 

The birth of WeHaveAFace...

Or, as someone once called it, "The red-headed step-child."

It wasn't comfortable hearing those words, but the person who whispered them in a crowd didn't know I was within earshot. But, I knew who she was. This woman was (and still is), a Huntington's disease  medical professional. I still often wonder from time to time if her words were just "tongue in cheek," or did she genuinely mean it.  Moving onward, my skin grew thicker, and the mission grew stronger. Slowly, but surely, the online community began to understand who we were and what we were trying to accomplish. Although I would occasionally hear that "someone said this," or "someone said that," those comments no longer held any gravity. They still hurt a bit, but I needed to move away from the negativity. In 2017, WeHaveAFace decided to orchestrate the first-of-its-kind convention of unity.  We invited every Huntington's nonprofit on the planet to attend.  The goal:  to unite and move forward as one - inclusively.  We were pleased by the attendance, however a year later, very little has changed, and for some, exclusivity continues. As planned, WeHaveAFace moved forward with our mission, with many goals to achieve.  

 

Funding! Wherefore art thou Funding?