But that wasn’t always the case.
I had mixed feelings about being interviewed for the film “The Huntington’s Disease Project: Removing the Mask”. My reluctance was twofold. First, I don’t express myself very well verbally. Second, I was afraid that speaking on camera would feel (as it ultimately did!) like I was taking my clothes off in front of a million people.
On the other hand, I admired the persistence of WeHaveAFace, led by James Valvano. The organization proceeded defiantly. Allowing the world to remain in the dark about HD was not an option.
I come from a southern background where “these kinds of things just aren’t talked about”. But I had grown restless, lurking in the shadows like some modern day Boo Radley. I wanted people to understand my symptoms, so I figuratively stripped down for the camera.
This film helped open the door into the world of the HD family. It is not a feel good film by any means. Audiences squirm when they watch it. Through first person accounts, the viewer sees how HD ravages the lives of people with the disease as well as the lives of their families.
The lens never wavers from the truth.
In ten years, WHAF has become a global organization. Through a variety of events and media, including “The Purple Road”, another award winning documentary about Juvenile Huntington’s disease, WeHaveAFace has shaped a world with a better understanding of HD. There has been a facilitation for discussion of the more difficult aspects of the disease. For example, HD can affect sexual behavior. Disinhibition and compulsions can lead to poor decisions, overspending, and the like.
Folks with HD seem more comfortable talking about these issues openly now. On a community level, this means more people know what behaviors to expect and how to help us. And on a personal level, we can separate our symptoms from ourselves and stop the shame cycle.
We can be proud of who we are.