Drawing of campers

Kelly is a regular visitor to Camp Squamish which is for people who have HD. Here she tells about her marvelous camping experiences.

My journey to camp started with a road trip from New Westminister to Squamish. Staffer Linda picked up me Johann and Leslie and drove us out to camp. This is two years in a row that although Linda did not go to camp she did pick some of us and and then also picked us up and dropped us back off at the end of camp. Thanks Linda.

The first day was wet yet memorable as we reconnected with previous years campers and met the two new campers. This was my 5 th camp so I knew almost everyone there. There were also a couple of new staff members this year. Including Dan, our Sheilagh's fiancee, they will be married this summer. Staffer Katy and Camper Sandy are also getting married this summer so we had a total of three brides to be.

We spent the first day unpacking, making up our beds, and catching up with each other. There is a real feeling of family amongst us, we share a rare genetic disease called Huntingtons, which gives us a lot of common ground. There were 15 campers in total this year.

We enjoyed our first supper together, and then had our first group session. We went around the room introducing our selves, telling about some of our HD family histories, how many years we have gone to camp, and the comfort scale rating from one to ten as to where we were. I said I was a 10, but I remembered being a -5 or -10 on my first day at camp years ago.

The next day(Wednesday) we dug right in with music therapy first thing. If you did not have a headache when you get to music therapy you usually do by the time you leave. Ha. There is a mass assortment of instruments and everyone is playing something different. WOW!!

After lunch we headed for the pool and our first games of pool basketball. It is dubbed the "pool with no rules" for a reason, it is a free for all. The greatest challenge is remembering who is on your team, as we are not marked, and have Huntingtons. So Captain Katy gave all of us green stars on our cheeks, with what turned out not to be washable marker... We named ourselves the allstars, and went on to win the game.

Then we had group therapy. This camps topics with Dr. Jess were on grief, recognizing losses, and the gains that can come from the losses. We broke into groups to do discussions. The bottom line was that we all have our our grey clouds, but they usually come with silver linings. A lot of times we grow through loss. It make a lot of good sense.

Wednesday was also the night that the Squamish Native Band comes to tell stories and sing songs around the campfires in the outdoor pavilion. Dale is very entertaining. He also has a beautiful new drum with whales, eagles and wolves on it. There were 5 other family members with him, including his young daughter who kept us entertained with being a typical kid, stealing her Dad's chair, drumstick and sneak attacks from behind his chair. This is the 5 th year I have seen her, she was a baby in a stroller the first time. She has grown, and has a great spirit for playfulness.

Then we had the good fortune to also have Sid Katz come to entertain us later the same night. He sang a lot of songs and did a running commentary on Woody Guthrie's life and learnings. It was great to see him again, Sid has a deadly sense of humor. Michael joined in too and played some of the HD songs he had written. It was a very musical night.

A couple of us sat outside by the dwindling campfire for several hours after everyone had gone to bed. We laughed, we cried, we shared. Very powerful. These two are my two best friends at camp as we had shared our souls to each other on previous years, when we first discovered that we all had matching baggage. Pure soul food.

I think the best thing that someone with HD can know is that they are not alone in their journey. I was told I was not alone years ago, but did not actually believe it until I attending my first camp back in 2000 and actually met 15 other people with HD. I have not been alone since.

Thursday was a flurry of activity. We did music therapy first, then went on our trip to Alice Lake. We arrived on the school bus for our walk around the lake and picnic lunch. I gave the staff a break this year and did not start singing "found a peanut" and several choruses of "it is the song that never ends". So it was a quiet drive.

We were given the task of finding something along the walk that symbolized something to us. Preferably a loss or gain. I found three acorns together on a twig and stashed it in my fanny pack for group later on. It was sprinkling when we started on the walk and raining by the time we had walked around the lake. For the first time in Susan's 15 th year history as camp director, we did not stay for the picnic lunch, but loaded back onto the buses and went back to the dining room for lunch.

At group therapy that afternoon we were asked to produce our objects from the walk and explain their relevance. When it was my turn I took out my three acorns. I explained that years ago I had seen an after school special that was about this girl who came to find these three magical acorns. All she had to do was make a wish and drop the acorn to the ground to make it come true. As I approached the basket I closed my eyes and said- "A cure for Huntington's, a cure for Huntington's, a cure for Huntington's", and threw all three of them into the basket.

Usually Friday is Banquet night, but with Susan's daughters confirmation was on that night, the banquet got moved ahead a day to Thursday. So right after lunch on Thursday we started decorating the dining room for the dinner and dance. It is a formal affair and I always marvel at how different we all look gussied up. I do not recognize half the people there. Amazing. Because of the rain we spent most of the night inside and did not have portrait pictures done this year.

Susan gave me a container with four different colors of sparkles to decorate those who wanted to sparkle for the banquet. I did my roommate Lorna first with silver before we left our room. Later on I was horrified to find that the container had come undone in my fanny pack and I had silver sparkles everywhere. Even my cigarette pack and leather lighter case were sparkly. So everyone who wanted sparkles had to take silver as I was attempting to empty them out of my bag without wasting them.

We had a turkey dinner with all the trimming for our banquet feast this year. And the dining hall looked great with streamers, balloons, sparklies, and all the art banners from previous years. We we given the matching sweat pants to go with last years navy hood/sweat top. There was a big H and a big D on the back of the pants. (For the rest of the week we were all HD bums.)

Plus there were various certificates for staff members and other small prizes for campers. There was a tote with mystery gifts in it. I won the first prize and was the first to blindly stick my hand in and draw a prize. Remembering the pranks I have pulled each year, my mind briefly flashed on the possibility of a pay back from the staff. I asked if there were any set rat traps in there before I stuck my hand in. And for good reason!! But I am happy to say that I pulled out a CD holder.

Friday we had art therapy and were to draw our own grey cloud/s. The accumulation of things that have happened and our losses that add to the grey cloud that can bring each of us down. I was amazed at the amount of losses I had had when I drew my picture. It was very enlightening...

We also started the art banner for 2004 as well as a secret banner we did for Sheilagh and Dans wedding. Both turned out really well. As a veteran in a 18 year relationship my advise was-Remember to take turns giving in. It seemed good advice.

The clinic staff came fo lunch again this year. Dr G and Dr Levitt could not make it, but there were several who did make it. I will never forget Joji on the trampoline. It was very entertaining and we have the pictures to prove it.

Friday we also had group again, plus chocolate making that night. The chocolate lady could not make it, so our our staffer Katy Girl saved the day by volunteering to do the chocolate making with us. Such a brave soul. It was great, lots of dunking pretzels, marshmallows, and everything else edible we could think to dunk. The hard part was waiting for it all to dry. We watched two movies too, and had popcorn to go with the chocolate. When the lights came on it looked like a popcorn bomb had gone off in the common room.

Pranks were somewhat limited this year. But the beautiful home made quilt that Susanah made and donated to the camp last year made for the perfect hiding place for 4 small whoopie cushions. And multiple victims, thanks Susanah, you were not even at camp this year and still helped us out.

Saturday came way too early because it was our last day at camp together. We wrote our song parity to the song- I hope you dance. It was awesome as usual. We had our last pool basket ball game. Vicious to say the least. Dean and I were team captains this time, and my team won, but it was very close all game. And the opponents were very formidable. The fun was in the playing not the winning anyways. Who said that?

Then it was our last group and a chance to share what we had learned or say if the camp had met our expectations. It is always a very somber and sad night. Each camp is so different because it is a different mix of campers and staff, the dynamics change each year.

For myself I had quite a few deep and meaningful conversations and came away from camp with a different perspective on many things. Some people have the power to change the way we look at things, by sharing of themselves or helping us to see things we have missed. They say to be a well rounded person everyone needs at least one person in their lives that will be completely honest with them. I am lucky I have several. I am a work in progress for sure. Thank you Jess, Dean and Lorna for all the insights, I will not forget the lessons learned. And the one lesson I am certain we ALL learned is that "thank you" is always the correct answer when some one pays us a compliment!!

Sunday morning was very sad as everyone bid adieu. One by one the campers and staff left out of the parking lot. I got a lot out of this years camp, but then I always do. Sure, I was up past one am every night and up at 7 am. And it took days to get rid of the bags under my eyes and a week for the last of my bruises from pool basket ball have faded(Leslie). But I would not change a moment. It is hard to put into words for someone who has not had this incredible journey. It is an adventure. And you get what you give.

Thanks to all the campers who came and helped to make this years camp such a wonderful thing. Thank you to the staff members who volunteer there time to be there for us. Thanks to all the volunteers at the BC chapter of the Huntington's Society of Canada who do the work to raise the funds that pay for us to go to this camp. And thank you Susan for leading the way each year. It was both an honor and a privilege.