We and HD: face-to-face with HD peers

Nobody nearby has HD and so there are no HD support groups in my neck of the woods. Luckily, there is a fantastic network of HD support on Facebook. Some of the most important people in my life are people I have never met.

This past weekend, I got the chance to meet a few of them.

At the WeHaveAFace.org’s First Annual Walk for HD and JHD, I was able to get face-to-face with other people who have HD. I also got to meet some Facebook friends in person!

I was nearly overwhelmed at the Orlando airport. I was going down the escalator, when (beside all these men in suits holding dry-erase boards to get the attention of their parties) I saw James Valvano smiling, wearing his WeHaveAFace T-Shirt! We hugged for so long that I could feel people around us staring. Maybe some of them thought that we hadn’t seen each other for a long, long time.

I guess they were right. Never is pretty long.

For several hours after our meeting, I had some cognitive dissonance where James was concerned. I kept checking to verify that James was not a flat picture that spoke in print. He is indeed a real live person who uses words. And he also has HD. I didn’t know what to expect, because James accomplishes so much, but HD affects him too. He has developed ingenious workarounds for the roadblocks HD throws at him. But that is his story to tell. I’ll just finish by saying that the live version of James is very, very cool. And his family captured my heart.

The next day at the walk, I met my Facebook friend Cindy and her family. I don’t remember any of their names, but they were so nice to me and helped me do things that my fine motor skills wouldn’t allow me to do, like tie strings around balloons and tape down tablecloths in the wind. I couldn’t make a decision about what to do about putting the tablecloths on, and suddenly, people were there to help me.

I missed my husband a lot at that moment, because at home he is the one who comes behind me and tucks the sheets in all the way. I was comforted by the notion that these very compassionate people were there because they love other people battling HD.

I talked to other people with HD that day, but I can’t remember any of their names or what we talked about. Such is the nature of my disease.

I do remember that some of their struggles were clearly different than mine. I saw them walking, eschewing wheelchairs for the hands of loved ones.

I saw them happily living life out loud. And then I realized that I was, too!




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