The Huntington’s Disease Youth Organization is a group that has successfully created a safe place for young people to learn and grow together through their connections with HD. The camp allows youth from across the country to come together and create life-long bonds, leaving with the knowledge that they have an endless amount of support and love whenever they need it. The four day experience provides a place where the youth get to live care-free, even when disease has taken over their lives and forced them to mature faster than other people their age. It’s a time of peace, empathy, joy, and freedom, as caregivers, the at-risk, and the tested are able to take a break from their heavy burdens. Most importantly, campers are gifted with access to time for self-care and relationship building-a type of therapy that helps them grow and provides the tools that they need in order to return to the harsh reality that lives back home.
Both Melissa and I feel extremely blessed that we were able to attend camp this year. The first HDYO event held in the U.S. during 2015 was our first time attending the European-based camp, and it’s also where we originally met. Because of our previous attendance, perspectives that we present about our experiences this year may come across as completely different in some ways compared to what first time camper’s experienced this year. We were both beyond ecstatic to be able to attend camp for the second time in a row, and during our four days there, we got to participate in so many different activities that gifted us with new positive outlooks within our struggles in dealing with HD. We also got to create new bonds with so many people who dealt with Huntington’s Disease on a daily basis as we shared our stories and gained precious insight on everyone’s different perspectives. We hope that you are able to read through our synopsis with open minds and understanding hearts, as some pieces of our stories were very difficult to share. We love you all with our whole hearts, and we are beyond thankful for the experience that HDYO provided. Enjoy!
Leah: I was extremely disappointed when I found out that I would not be able to attend camp this year, but I understood that there were many young people who needed to experience the healing support system that HDYO camp provides. At the last minute, however, I received an email stating that someone had cancelled their visit, providing an open spot for me to attend. Without hesitation, I jumped on the bandwagon, despite feeling that the age of 23 was too old to be considered “youth.” A couple of weeks later, I hopped on a plane with six other Texas natives who where affected by HD, and we bonded instantly.
Melissa: When applying for camp, I had suspicions that I might not be accepted again this year because I had attended the year before. The staff running the event knew I would be going through my testing process this summer, and that I would need support despite what my results presented. I encouraged my cousin to apply this year, so I knew my acceptance would come along with hers, as her parents did not feel comfortable with her going alone. When I attended last year, I felt that being 20 years old was a good age to be accepted as a camper, though I had never attended any kind of summer camp before. I applied again this year before my test results came in- before I even officially started the process, and I felt my age wouldn’t be a barrier for any reason. However, as the week of camp approached just a few months after my positive results came back, I felt that I had aged years in just two months, so I was nervous to go back. I put off planning and packing for the event as long as I could, and when my cousin joined me in Columbus the night before our flight, I still hadn’t been able to grasp the fact that I was going back.
Leah: I was beyond ecstatic when I arrived at camp. The nostalgia that came with breathing in the fresh Maryland air reminded me of my great experience from the year before. For the first two days, I met some amazing people from across the country who shared in the same struggles that I dealt with every day. The camp split us into groups so that we could talk more intimately about coping, advocacy, caregiving, and making the best out of our seemingly hopeless situations. We all shared our stories with each other, laughing at the good times and crying through our hardships.
Melissa: The instant I arrived on site, I felt a sense of relief and calmness that I had left at camp last year. The water, the sun, the fresh air, and the sound of birds peacefully took over my ears and lungs. I was immediately happy to be back at the place that forever changed my life exactly a year ago. However, I did not feel prepared to talk about the events that happened to me during the year that had passed. I felt entirely disconnected from my own mind; it was as if my body was back where it belonged, but my mind was wondering elsewhere. It took me all night and a bit of the next morning to get back into the flow of camp and feel like I was actually all in one place.
Leah: On the second day, our group decided to discuss the stages of grieving: Denial, Anger, Bargaining, Depression, and Acceptance. I found it ironic that this topic was brought up right after I had written a poem on these exact steps when it came to finding out my positive test results.
As everyone else silently wrote an excerpt on their loved ones with HD on foam shapes cut from nature-inspired patterns, I reluctantly addressed the similarity of our session with the theme of my poem. I asked if I could share it with the group, and everyone eagerly agreed that I should read it out loud.
I was nervous, as the depth of my declaration was very personal and unseen by the world at that point, but I decided to read it anyways.
As dramatic impressions spilled out with every spoken word, more and more members of our group began tearfully mourning in empathy, and guilt bubbled up inside of my chest as I witnessed hearts breaking with my story. Some ran off before I got to finish a poem that shed hopeless rhetoric and a sense of tragedy within its beginning, and they never got to witness my conclusion that presented the correspondence between our struggles and hope, what some might call a happy ending, as the last line claimed:
“I will march in the infantry of empathy, and help others stand with honor.
‘Embracement,’ seemed appropriate for my stance on this overwhelming illness
And I will finish this race with every ounce of strength I have.
My name will be known as Fearless.”
I have to admit that I began to feel slightly overwhelmed with grief as my eyes met the heavyhearted gazes of our group members. They were all so young, so new to the world, and already so burdened. From that point on, I decided to take on a vow that resembled silencing myself so that I could listen to their stories. I wanted to make my time at camp a season of absorption; I wanted to feel every aspect of my camp member’s stories so that I could obtain a clearer sense of empathy in order to uncover a deeper part of myself that would be able to provide hope for those in need.
Last year, when we were split into our groups for discussions, I was so elated to have people surrounding me who knew exactly what I was going through. I feel like I really got to pour out pieces of my heart that had never been exposed before. I had a sense of urgency to get my pain out and receive answers to questions that I had always been too scared to ask.
This year, however, I found myself quietly observing my group and soaking up all that they had to say. After the newfound sense of my peers heavy-burdened reality, I found myself mourning relentlessly, which caused me to feel a little out of place as I tried to navigate through my perilous thoughts, tirelessly attempting to find something solid to cling onto. I desperately wanted my time at camp to be full of joy and lightheartedness, but I couldn’t seem to take control of the misery in my mind.
Melissa: I knew I had been holding a lot in since I discovered my positive test results in June, and I knew that I could easily become a ticking-time bomb in this kind of setting, so I stayed quiet as long as I could during the morning sessions. Finally, during one of our group discussions, I decided to talk about my boyfriend and the sort of separation that had grown between us since we both attended my test results only two months earlier. Though the distance in our relationship is not physical, there seems to be tension in the way we are both trying to re-navigate our lives towards a healthy future together. The few words I attempted to get out ended up leaving me in a weeping mess of tears. In the moment, it felt good to get out, but essentially left me feeling separated and distant from camp once again.
I felt that no one else in my group could relate to that specific area in my life, and after crying for a few minutes, I realized I had to pull myself together. I knew that I did not really need to get my worries out as much as I needed to feel important and useful for the other campers who may have been thinking about testing, or wondering what the process was like. In that moment, I decided to dedicate the rest of my time at camp to providing support and guidance for other campers rather than using my time to improve myself. I was not the oldest camper there by any means, but having tested so recently, I felt extremely mature and much more aged than I was last year, and that put me in a position that I felt needed to provide guidance rather than seeking solace for myself.
Leah: On the second night, the camp held a bonfire at the edge of the lake. We were all given a piece of paper to write our greatest fears on, and when we were ready, we could walk up to the fire and throw in our pieces of paper, watching our worries fade into nothing but ash and smoke. We had the option to either toss in our fears silently or share them out-loud. The year before, I burned my fears away silently, but this year, I wanted to announce them to the world so that others might be able to hear and relate. I wanted to wait until the very end, but after about five minutes of silence, one of our leaders began to announce that the event was over. I quickly stood up, interrupting, desperately exclaiming that I wanted a chance to go. I felt embarrassed that I had waited so long, but I took my turn anyways.
I shuffled over to the fire, standing so close that stray embers floated around my body as flames licked the ground around my feet. I took a deep breath, proclaimed the terrors that haunted me constantly, and then hurled my crumpled piece of paper into the midst of the fire. I watched it burn and disintegrate into dust on the ground, and I promised myself that I would try and leave my fears there where they belonged.
I watched as others slowly did the same thing. My heart swelled with pride, mostly because I was familiar with the kind of courage it took to stand up in front of everybody and spill your soul. The event was therapeutic, to say the least.
On the third day, I was very silent during our group sessions. I wanted to grieve for every soul at that camp, and became exceedingly downhearted with every story I heard.
I have never been the type of person who is good at coming up with words to speak out-loud (which is why I write), and all of the sudden, I realized that I would never be able to come up with any combination of words that could sufficiently empathize with the pain of our youth. My soul sort of curled up in anguish, and I spent most of the third day in our cabin, attempting to distract myself from reality.
It sounds selfish, I know.
Melissa: Our third day of activities involved group sessions divided by age. This group felt a lot more comfortable to participate in, as the problems I was going through in making life decisions centered around school, my career, and my future family were all constantly haunting me in the back of my mind. In the morning, again, I was feeling pretty disconnected and didn’t speak up much. There were plenty of things I wanted to say, but I couldn’t find the words or the gumption to say them. Instead, I sat in silence and absorbed everything my peers were experiencing.
After lunch, I felt I had spent enough time sitting back and listening and decided to truly speak up for the first time all weekend. When the girls in my group began discussing their thoughts on testing, I finally felt like I was in my zone and easily able to provide my input and support. I discovered then that talking about my situation was not hard, especially when I knew it could be helping people. I realized I could find and build strength off of sharing my experience and knowing that my story could help someone else create their own.
After that session, I was truly relieved and empowered from the entire weekend. I felt like I could leave camp knowing that I fully participated in the best way possible for myself and my current situation, and I believe I was successful in helping the other campers around me. I discovered that despite my initial fears and separation from being at camp, I found a way to make my time there useful for others while feeling like I spent my time doing something that helped me feel better, too.
Leah: On the third night, we had a speaker from South Africa named Lysle Turner come in to speak about his journey of climbing Mount Everest. During his first attempt, an avalanche wiped out 90 plus people at his camp, but he was fortunate enough to survive. Within the same year, he began his climb to the summit all over again, facing the deadly negative temperatures, the risks of terminal downfalls from the pressure of the altitude, and most destructively, the waging of a war in his own mind as he relentlessly trained his thoughts to fight through the negative voices that whispered in his ear during the many days he spent in silence.
As he spoke, I held back the tears that my body had been longing to shed as a new sense of passion and courage began to emerge from places that had become numb and barren for quite some time. I felt my heart began to beat to the rhythm of hope once again, my pupils dilating in wonder as he displayed pictures of himself finally at the summit, planting a flag on top of the world with the names of 200 people who had suffered from HD.
I believe that I became stronger in that moment as I watched his seemingly impossible dream emerge victorious, despite the overwhelming risks that his climb presented.
Suddenly, I wished that I hadn’t hidden from my emotions during this trip. I felt as if I had missed out on some amazing opportunities to bond with my group and the others at camp, but in my heart, I knew they understood.
Melissa: Although I felt more disconnected from other campers and struggled with my emotions this year, I found that each person I talked to made me feel so proud to be a part of this community. I did not reach out as much as I did last year, and I made less of an effort to build strong connections. Part of me regrets just sort of floating through the first two days of camp this year, but despite my own shortcomings, I found that each person I talked to made me feel loved, and every person I met had a story or an attitude that I could take back home with me to use as inspiration during my hard days.
Lysle Turner’s talk about his 60 day voyage to the summit of Mt. Everest was extremely inspiring. His story motivated me to always attempt to be fearless in this fight, but also to remember that fear is natural in a world like this one. And when those fears begin to creep up, we must be aware that there are always going to be more people who support us through the hard times, the “earthquakes” that unsettle us, and encourage us to keep going.
Just like Lysle’s story, there were so many young kids new to camp this year that were beyond inspiring in the same way. I met a sixteen-year-old girl who had given up so much and made huge sacrifices every day to care for her mom in a way I had never experienced, yet her smile and laughter was contagious and beautiful, filling the entire space that surrounded her with joy. I met sisters who dived right into the community after learning about their mother’s illness, and had fund-raised an insane amount of money for the HD community. There were people who had known about Huntington’s in their family for 16 years, and some who had learned about their parent having it only a few months ago. There was a whirlwind of differences in all of us, yet our ability to bond and share and understand was what made my experience at camp so rewarding It is what has truly inspired me the most.
Leah: After Lysle’s speech came the closing ceremonies, which is always my favorite part of camp. Every single person got called up and recognized for their unique attributes. The whole room cheered for every camper, applauding their accomplishments and spreading so much love and intimacy through little words scribbled on a piece of paper.
Everyone felt special that night.
Afterwords, the campers moved to the mess hall to dance the night away. No sadness, no mourning, and no shedding of tears. Just a group of people who bonded in a matter of four days over a horrific disease, rocking out together and having the time of their lives.
It was beautiful, renewing, and a breath of fresh air.
Melissa: Our last morning together consisted of packing, eating a quick breakfast, taking pictures, saying goodbye, and making lasting memories together before parting ways on our separate buses to the airport. Before we left, we got to hear another guest speaker, Jeff Carroll, who came to camp last year. Dr. Carroll is a researcher in the Huntington’s field, and he has tested positive for the gene mutation himself. He and his colleagues have made huge leaps in our destination for a cure. His story, his positive outlook, and his motivation were all exactly what we needed to end our time at camp together.
Leah: The type of bond that HDYO provides is one that will live on forever. It’s where I met Melissa, opened up to strangers who are now life-long friends, and found a sense of passion that I thought had disappeared long ago.
In four days, your life can change. Ours did.