When people use the phrase, “I am HD strong,” one usually thinks that they are referring to the strength that comes from having or dealing with Huntington’s Disease. Though they are not wrong, they are not completely right, either.
This past week, the Huntington’s Disease Society of America held their 31st convention in Baltimore, Maryland. Over 900 people showed up to share their stories, learn everything there is to know about this awful disease, and to lend a hearing ear and a shoulder to cry on to those who needed it (and there were plenty in need, trust me). We all made so many new friends, danced, laughed, and above all, let others know that they are never alone.
Last year, I was completely new to the HD community, and my recent positive test results did not make socializing any easier. I had a really difficult time at first: “I could feel a headache setting in when I remembered where I was (or more like what I was there for). I just wanted to stay cuddled up in bed all day and stare longingly out of my window, but something that day coaxed me out from under my warm sanctuary, placing my feet on the ground and dragging me downstairs to one of the HD sessions.”
I did not want to be there last year. I did not want to take part in a whole weekend dedicated to reminding me of everything that I had been trying to forget. By the end of convention, I walked away with a new mindset on HD: “The rest of the weekend, I opened up to people I barely knew, but they understood my pain better than any friend I’ve ever had because they had experienced it firsthand. And I listened to their stories, my eyes flickering with empathy at the mention of the sickness that haunted our lives. In less than two days, I had a brand new family, and we helped carry each other’s burdens.”
This year, I was geared up and ready to go. Excited, even. But the lesson I took away at the end of the week turned out to be one of a considerably different nature.
On our first day of sessions, I decided to go to on called “Long Term Care: What To Expect.” Oh yeah, I was diving in really deep really fast this time, considering that my first session last year was on coping. I figured I could handle it-no big deal. Nothing I hadn’t heard before.
I walked into a small, crowded room and decided to post up in the back. The speaker began discussing ways to make your home a safer environment for the people who were in the physically debilitating stages of the disease. Her words started to become more and more distant as she went into feeding and hygienic care, and my heart started pounding so loud that I couldn’t do anything but look around the room. There were so many people who were in wheelchairs, twitching, grunting, fidgeting. When I looked at their faces, I swear I could only see mine. This was my future.
And I was having a panic attack.
I was also confused? I am no stranger to seeing people sick with HD, quite often actually, and I’ve never reacted with such fear. I saw myself in their place, and I couldn’t shake my fate.
After taking a few moments to catch my breath, I stepped into the room next to the “Health Care” session, not really caring what might be going on inside.
There was a Jack Johnson song playing and a circle of chairs. I was still shaken up, so I sat on the ground in the very back.
This room was also full of very symptomatic people, but just as I was about to leave, they got up and started dancing. They danced around the room, with each other, snapping their fingers and humming along. The music continued to get louder and even more upbeat, and I couldn’t help but tear up when I saw how much fun they were having. They weren’t bored or anxious or frustrated, even though some kept bumping into each other. Everyone was having fun!
Even I began to forget that they were sick as their twitching began to blend in with their dance movements. I don’t think I’d had a happier moment at convention than the one that was right in front of me. For the rest of the day, my heart beat at a steady pace while my face held up a continuous grin.
The rest of the weekend was full of so much love and understanding, both that I received and gave (to the best of my ability).
When people were weak, others were strong.
When people were lonely, there were 50 people waiting in line to be with them.
When people were afraid, others showed them what brave was.
When people were uncertain, others reassured them that it was okay be unsure.
And when some people got a little too ambitious on the tequila shots and left without telling anybody, others ran around the harbor, fearing for her safety until she was found walking nonchalantly back to her hotel room.
This past weekend I learned what it really means to be HD strong. Being HD strong means that you are strong in every aspect, not just when it’s specifically related to Huntington’s. Because of my convention experiences, I have become a stronger daughter, a stronger friend, and a stronger, more independent woman. I realized that living with HD is a part of who I am, therefore it affects every aspect of my life. For example, I have never received more loving, open arms like I have at convention. This has taught me to be a better friend because I have seen how much great friendships mean to me and how much I need them, and I want to give that gift to others as well. Likewise, I used to feel extremely lonely without a boyfriend, but now I know that I wouldn’t trade the love that I received at convention for any man’s. And the list goes on.
And much like you saw in my experience while I was having a breakdown: Life is what you make it to be. In one room, I saw a crowd of people ill with Huntington’s, and in the other room, I simply saw a bunch of happy people dancing with joy.
I want to be the dancers.
I want to be HD strong until my very last breath.