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Huntington's Disease Youth Organization

Ashley's Euro Camp Experience

HDYO has more information about HD available for young people, parents and professionals on our site:

www.hdyo.org

October 3, 2016

HDYO News

To start I would like to Matt and Cat for all of the organization and effort that was put into pulling off such an amazing week. I’d also like to express my most heartfelt appreciation to Michelle, who is my support worker in Northern Ireland and to Grant, who was my team leader and my temporary support worker. You and all your colleagues do such amazing work and deserve utmost gratitude for all that you do. I’d also like to thank my girls Chloe, Roisin and Amy as I couldn’t have asked for more fun-loving and wonderful people to share this experience with!

Okay, down to business!

I was chosen to attend the Euro Camp as a representative for Huntington’s Disease for Northern Ireland. A privilege, of course and a massive blessing for me personally to be given this opportunity as fighting the disease and helping those afflicted and affected is so close to my heart.

To be perfectly honest, I was so terribly busy in the week leading up to the event that I barely had a chance to get excited or consider what was in store. I was working right up until the day before departure so one day to prep was just going to have to be enough.

My other half, Stephen, is my rock. He has been since day one and I truly don’t believe that I would have gotten set and away on this trip without his support. He helped me to pack and gather up the things I would need. He kept me grounded, kept the stress at bay and prevented numerous meltdowns (which is nothing new).

The beginning of my camp experience was slightly shadowed as I found myself becoming very friendly with the toilet bowl at 3am, throwing my adorable little guts up! This was just about the o'clock I should have been hitting the road to pick up my girls to catch our flight. Not exactly ideal, but needs must and I wasn’t about to let a touch of extreme nausea stop me. And so, mouth armed with the taste of fresh vomit (sorry), I set off down the lane with Mummy worriedly waving me off.

Standing outside Chloe’s house with the chilly am air on my face and an anti-sickness tablet in my paw, I could only thank Chloe’s mum Helen (One thing I will say is that HDANI peers take care of each other!)

After a fairly significant accidental diversion, we found Amy’s house next and then it was just a small skip over the road to pick up Roisin. Onwards to Belfast City Airport, we were on time and getting very excited despite the obvious tiredness one tends to feel in the wee hours of a morning. I had pre-booked us into the carpark to ensure smooth sailing (or flying, as the case was). “Fat chance!”, laughed the barrier as it failed to move for this trusty little car full of eager Huntingtons affected gals. Thankfully we were soon rescued by a nice parking attendant lady and we made our way through departures. Before you can say Huntington’s, we were off and I was away to snooze land.

Upon landing, we promptly managed to lose Amy after she popped to the bathroom. When she never returned we resorted to sending out a search party. The poor girl had been lost and sitting in the baggage office with no phone and no passport with no idea who to contact. Despite the panic and delay, we all got a great laugh out of it.

As more and camp-goers joined us, the atmosphere was terrific. It took about six hours for everyone to convene. Under normal circumstances, a six hour wait for a group to form and a bus to arrive would sour my mood somewhat, but it seems that being surrounded by good, like-minded people and making friends, tends to make the hours fly by and, once on the bus, I was out for the count once again!

Once awake and at the camp, we unloaded all the bags and waited to be given some instruction on our next move, where to go or to be given some kind of schedule. Thankfully, my room was to be right beside the girls from NI and I was sharing with a lovely girl from Germany. It was amazing to see such diversity and encounter people from all walks of life who share a similar experience to mine. We bonded so much and I felt really humbled meeting all the new faces.

Soon after getting settled into our rooms we were asked to meet outside at Bath, which was the building my girls were rooming in. Each building around the camp was named after a place in the UK. They all had a little black taxi and a traditional red phone box. I thought that the camp grounds were really beautiful and well maintained overall. It was like being in our own little village paradise. I felt instantly at home and very comfortable.

We were taken on a tour of the camp and shown where all the necessities were, like where to refill our water, the dining room and the sports hall. The tour was short and sweet and soon it was time to head to the sports hall to find our groups for the week and our leaders. This is where I got to meet Grant. It was quite frightening to be suddenly out here on my own, away from my safety blanket of familiarity and having to introduce myself and meet new people. But everyone was so very friendly and the organizers had clearly anticipated people feeling a bit out of water so had arranged ice-breaking exercises for us all. This was a fabulous idea as soon we were all laughing as we played bingo! Who doesn’t love a good, old-fashioned game of bingo?!

Then, as there was a large number of campers we were split into two groups and asked to form a circle. Everyone knows this game, one of the most common ice-breakers going! But it’s always fun so we embraced it, throwing a ball around, stating our names and showing off an interesting face! Before long we were all like old pals, heading to the dining hall. I did my Irish roots proud my loading up on potatoes all week long. It’s not a myth guys! We freaking love potatoes!

When you miss a night of sleep you dread your alarm going off at 8am. Thankfully I didn’t have to endure mine, as my roomie was kind enough to set hers for 7am and again at 7:15. I went and got my butt burned off by the water in the communal showers (first world problem!) and headed for breakfast followed by my team meeting.

The topic of the day was sharing. Everyone loves to share, right? It was a great topic for the first day as we were still getting to know each other. Gradually, people started to open up more and more and it was an amazing experience to, not only hear the stories of others and sympathize with that, but for myself to be brought to the stark realization that I am not alone and other people got through many of the feelings that I go through in my struggle to accept and deal with Huntington’s Disease. I very much felt that even the people who chose not to open up so much over the course of the week were still able to come away from the experience feeling better, more educated and less alone than they did going into it. For me personally, it was so freeing to be able to talk unabashedly about my experiences to people that I knew would understand and refrain from any judgement. On some topics I remained calm and composed and talking about others, I found myself in tears or angry. It was incredibly liberating!

Monday was an easy day overall. I feel that its purpose was preparing us for the week to come. We had some room moves that evening and played an exhilarating game of Scrap Wars, which was so much fun I can’t tell you! We laughed and behaved like children and forgot about our worries and responsibilities. It was an evening of much needed total freedom, which we brought to a close by retiring to our rooms in our PJs and indulging in some chatter. We talked about Huntingtons and about our families and our home lives. We bonded and smiled and sympathized and learned and and laughed so, so much. I’ll remember that Monday evening for a long time as it was a time when I made some true friends and felt a real sense of belonging with this group of people.

Wednesday began with the usual morning meeting after breakfast and we opted to partake in a bit of aerial runway. Sounds safe and not much of an adrenaline rush, right? Ha! It was so much fun! Harnessed and helmets on, we were in groups of three on a platform where an instructor attached us to a wire and we had to leap and zipline to the bottom, running mid air to make a (semi) graceful landing! I failed every single time, crashing to the ground with the grace of a cat in a bath.

Next, we went fencing! I had never done this before and it was great craic! Despite the poor instructor’s attempts to teach us some technique, there was none to be had. We just wiled away the lesson time, pretending to beat each other with swords. Once again, we behaved like kids, laughed and forgot about the problems, a common theme throughout the week!

After activities it was time for lunch so we got a short rest. Next it was into workshops. Today’s topic was testing. This was a tough subject for me personally. Knowing beforehand that I was going to find it difficult I decided to call my mum and check in and hear her reassuring voice. It was nice to hear that everything was okay back home even though she told me that dad was giving my brother a hard time. This is one of the reasons why we take joint responsibility caring for him. It’s a hard job to do solo and I must admit to feeling a pang of guilt knowing that Ryan was struggling at home. But Ryan is a hero. I knew he’d be okay. Still, after hanging up the phone, I began to cry. I still don’t know where the tears came from. Maybe it was a release, pent up frustration and upset, maybe the sound of my wonderful mum’s voice made me well up, maybe it was subconsciously knowing that I was in a safe place where I was free to cry if I needed to cry.

Walking into workshop looking like a raccoon, with my mascara all over my face, my leader Michelle immediately pulled me aside for a chat. She was such a star, helping me to sort my head out. She listened and advised and understood. I missed the first session because of it, but I needed those moments with Michelle and she was truly there for me.

In the second session, two volunteers spoke of their experiences getting tested for Huntington’s. Luckily for them they had a smooth experience and their results came back negative. It was an emotional day for everyone as being tested for the Huntington’s gene is something every child of an afflicted parent is terrified of. I was quite envious of these campers and when I went through the testing experience myself, I found it very traumatic. I didn’t even get an answer. To this day, I am in the dark and I found myself wishing I could sense the relief that they must sense knowing they tested negative. In the aftermath of everyone speaking about their own experiences, we were encouraged to talk about how we felt about the day overall. I couldn’t. I didn’t want to. Normally I’m such an open, positive and outgoing person. Today I just didn’t feel up to it. I felt jealous, angry and upset. Silence was my solace. It was what I needed in that moment and, unsurprisingly, I was given that freedom without judgement.

That night, we had a campfire. What kind of camp would it be without one?! We had previously written down our fears personally on a little piece of paper. Now was the time when we were to throw this paper into the flames. It was a symbolic metaphoric way of throwing away our fears, watching them become engulfed in the fire. As personal as they all were, I am not shy to admit that mine were the fear of losing my family and the fear of not being able to live my dreams. I was also a little bit sneaky and threw in a wee wish, which was to live my life and my dreams! It was a wonderful experience to sit with like-minded people, eating smores and watching our fears burn.

After, we watched a fabulous documentary called ‘Twitch'. I highly recommend this film guys! It was about a young girl in America who lost her Mum at a young age and decided to get tested while still in high-school. It was thought provoking and brought up a lot of emotions for a lot of us there. Thankfully, the leaders were on hand to help anyone who needed a bit of a chat or a lifted spirit.

Thursday’s topic was relationships and communications. We had three workshops broken up with activities. The first was talking about friends. For these workshops we were divided into age groups. 15-18, 19-21 and 21+.In the group we discussed telling friends about Huntington’s Diseaseand how that was for us and how our friends reacted and dealt with it. Everyone had different views and experiences. For me personally as I now have an amazing group of friends (they know who they are) and I couldn’t have gotten to where I am without them. From the old friends that havebeen with me from day one to the new friends that I have met along the way I am blessed to be one of those who know to support is there. After listening to everyone in the group it definitely opened my eyes to other experiences that have been much different to mine. Some people have lost friends over HD because they did not know how to handle it or deal with the news. Others were unsure of how to tell friends and how much to share with them. It made me appreciate how lucky I am to have such good people in my life and it made me realize how my attitude towards the disease has contributed to this. I feel like my willingness to talk about it has made it easier for those around me to understand and deal with it. It was nice take a moment to feel grateful.

The next session was concerning family. This is the one that truly upset me and got under my skin. Anyone who knows me will stand testament to how important family is to me. I am lucky to have a family that is as open to talking about Huntington’s as I am. My grandmother had the disease and died from it. I wasn’t told this until I was old enough to understand and process it. That’s something I am thankful for because my parents kept this worry from me and allowed me to live a normal, carefree childhood.

The family session provoked emotion in me, which I totally expected. I called my mum again (getting the impression that we’re very close?) I adore my mum. I adore my brother. My extended family have not always been super supportive and we aren’t as close as I would like to be with them. But life is what it is and I also believe that this is the reason that my immediate family is as close as it is. Oftentimes, the devastation of Huntington’s Disease can push family members away instead of pulling them closer together, which is what we all want. Alas, life doesn’t always work the way we want it to, but I feel that I have been rewarded in other ways by having a mother and a brother that I will be eternally grateful for and obsessed with! Not only this but I am blessed to have a partner who has an amazing family too who have taken me under their wing and love me dearly. My point is that it doesn’t matter who your family are by blood. Your family can be the people you care most about and you care for you, who are there to support you and guide you through these difficult times. Don’t hold grudges or resent people for turning away. In their eyes they have their own problems and Huntingtons is not their first priority.That’s okay. You can accept that. Surround yourself with people who are there for you.

Activity time in the evening was there to cheer me right up after a tough day emotionally. This evening we were wall-climbing. As much as I absolutely enjoyed it, I am most certainly not getting cast in the next Mission Impossible movie! I managed to climb about my own height and then freaked out! Sideways across the wall? No problem! But up? Not exactly my bag!

After the activity, we headed for our last workshop. The topic was partners.

Now I don’t want to get all super soppy and emotional again over this one. But this is one area that I feel truly blessed. Stephen is my rock. He keeps me sane. He keeps me laughing. I called him at one point upset and bawling. You think that I’d be telling you he offered support and kind words, but my love told me that he was sending me to the pound on account of the thick Northern accent I’d apparently picked up. How could you not laugh? How could you not feel better? So I was thrilled to be able to speak to my new peers about Stephen. I could call it bragging. But the truth is that I’m honestly so proud. I’m proud to have him and I love to tell others about him.

The rest of the day was relaxing. For dinner, I had more spuds. Haha! Spuds had fast become the running joke of the whole week! Here was Ashley the Irish girl living of spuds! I think I must have kept a farm in business for that week!

In the evening we had the amazing Charles Sabine give us a message of hope. I took a lot away from this talk and I think everyone took positivity from it. He is a truly inspirational man. After the talk, we did a Q&A session. I could fill pages with the things this gentleman has to say so I have decided to spare you the read and I will do a video log in future because there is so much to cover and he really deserves his own post.

On Friday we started the day as usual with breakfast and a meeting before I was privileged to have an interview with Mr. Sabine (again, for later) before we headed off to practice mindfulness. It was amazing, you guys! I will definitely be carrying on with mindfulness and I totally believe we should have started every day with it instead of waiting until the last day to learn about it. I have even been trying to get my friends back home to practice it.

Overall, Friday was a very relaxing day. We talked about what it is to be caring for someone, something we could all relate to and bond over. We then had alot of free time as we were allowed off camp for two hours. Before that we got to tie dye our camp t shirts. I think the other campers thought me and Amy had gone mental in the sun. We sat at the picnic tables while we were been given the colours and t-shirts singing out we hearts out at the top of our lungs. I do apologize for the people who had to listen to us. I absolutely love tie dying and think every camp should have this activity and I love wearing my t-shirt!

On Friday night we had a great party to bring the week to a close. We had alot of sweets which we had been starved off all week and some cheesy music. After dancing the night away and signing each others t-shirts night we headed to bed at 11.30, very innocent! Time to go home in the morning!

On Saturday morning we were privilege to an amazing talk from Dr Ed Wild. I have heard Dr. Ed talk almost yearly and will continue to do so as long as I can and recommend everyone with an interest or investment in Huntington’s Disease goes to see him or looks him up as he’s amazing. I will post a breakdown of his speech and what he does for you at a later stage too because there’s so much to cover in this already long post.

Getting home on Saturday, I was physically and mentally exhausted. I didn’t even bother to unpack my bags as I thankfully had a couple of days off work to rest and get back to myself.

My week with the HDYO Euro Camp was something that I will never ever forget. I made memories and friends there that I will carry with me and cherish forever. I didn’t realize until I went there just how much I needed it. It was a freeing and humbling experience to meet so many other people who are all fighting their own personal battle with this disease. I felt a real sense of belonging and I have come out of it the other side feeling inspired to step up my game even further to bring my #I'mNotDrunk campaign to the forefront of my priorities and make it known to as many people as I possibly can.

Thank you again to all the organizers and participants in this year’s camp. What you do for people should never be underestimated.

You can also read Ashley’s blog post about the camp.

Ashley Clarke
News Team Reporter
HDYO

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