by Alexis H.
Since receiving my diagnosis of LQTS Type 5 at the age of 12, I had always wanted to go to a heart camp. The children’s hospital where I received care in Alberta, Canada had posters for a heart camp in California on the wall but when I asked my doctor about anything closer, she told me there was nothing. I had essentially given up hope that I would ever have the chance to attend heart camp when I turned 18, shortly after having LCSD and my ICD implanted at the Mayo Clinic in Minnesota.
However, I knew from following Facebook posts that one of our close heart friends (my heart sister, Michele) had sent her daughter to Camp Heartbeat in Virginia, close to where they live and she had a blast. When I researched the camp, I found out they accepted campers up to age 19. My mom and I then asked Michele if I could stay with her until she dropped both myself and her daughter off at camp since her daughter would also be attending. She told us absolutely, yes and thus the planning began.
On June 16, I flew out to IAD (Washington-Dulles). Though the journey was far from simple or direct. A missed connection and being stranded in Atlanta, Georgia for hours on my first international flight on my own did not stop me. I stayed with Michele and her family for a week before heart camp. The entire time was filled with priceless adventures and memories I will treasure forever. It was an incredible feeling connecting with a family whose relationship and experiences with LQTS are so similar to my own. They live life and are not bound by fear or apprehension. In fact, they live more because of LQTS just like I do. During the trip, we visited caverns together, toured Washington DC, visited the Smithsonian Museum of Natural History, met their horses and chickens, toured a winery, and caught fireflies (for the very first time for me since we do not have fireflies where I live).
I will remember the way we hysterically laughed as Michele’s husband drove the golf cart down the golf course in the darkness of nightfall in their gated community after we caught the fireflies down by the river forever. The sketchy engine was incredibly noisy and leaked gasoline, so even our hair and skin smelt of gasoline afterward, yet we could not stop smiling and laughing. During our time together, we laughed, cried, and bonded. We immediately felt an incredible sense of connection that only intensified as the week progressed.
From June 22-27, I had my dream of attending heart camp come true at Camp Heartbeat in Virginia. The entire experience could only be summed up as incredible. The unspoken sense of community and connection felt by everyone was incredibly moving, knowing that we all understood more than most others could about the challenges and triumphs of living life with varying heart conditions. Although our heart conditions were different, we face many of the same obstacles. It was priceless to be with others who shared that sense of understanding. Everything was taken care of. I did not have to worry about anything. I got to be a kid for a week and my only major responsibility was getting to my next activity. Seeing the scars and hearing the stories from other kids made me feel so much less alone. I finally wasn’t weird or strange. I was no longer “the girl with the heart condition.” I was just Alexis. I was me.
Throughout the week, I stepped out of my comfort zone and participated in a variety of fun activities. I ribbon danced. I did yoga. I painted, made bracelets, and made a clay strand of DNA.
I laughed as we played Apples to Apples and UNO in the game room. We even had a spa night where I got to have my nails done. We sang along to campfire songs well into the dark of night by the lakeside and made s’mores. I also had the opportunity to meet the very first girl my age in person living with LQTS. She also has a pacemaker, while I have a dual chamber ICD/pacemaker which just added to the sense of commonality.
Even when a severe thunderstorm approached with gusts of 60 mph wind and we couldn’t leave our dorms, we didn’t let that stop our fun. As the rain poured outside and the wind howled taking the power out for hours we played UNO in the pitch black, chatted, and watched the storm. Once the storm calmed but the power was still out, we had the opportunity to participate in a doctor talk where we could ask the cardiologists any questions on our mind relating to our heart conditions or health care. The cardiologist emphasized an important point that I passionately believe in, simply put, “Live your life.” In addition, the doctor encouraged us all to take control of our own healthcare and ask any questions we have for our doctors ourselves so that we form a solid understanding of our own conditions.
A standout moment of the week for me was when we had breakout sessions split up according to age where we got to share both the challenges and the positives of living with heart conditions. Despite our heart conditions varying widely and some having electrical conditions and others having structural heart conditions, we shared many of the same difficulties and positive parts that come from our experiences with our conditions in high school. Many of us struggle with missing out on things and always having to catch up in school and life because of our health. However, on the other hand, having heart conditions has helped us to appreciate the little things. It made me less fearful. I live my life now instead of just being alive. I even traveled over 4,000 km from home to be at camp in a different country away from my family. It helps us to focus on what we can do rather than what we cannot. It helps us to realize our own inner strength and to be ourselves. It was also emphasized that we should remember that our goals are our own. They are not anyone else’s. Every day we wake up we are getting closer to our goals, not further away even though it may be slower than we would like. That was a powerful takeaway for me.
Throughout the week, we competed in events earning points for our randomly assigned teams for the Camp Heartbeat Olympics of Team Killer Whales and Team Great White Sharks. I competed in trivial pursuit and helped to make our team flag that was used in the Olympics. There was also a camp talent show that I watched with delight and I enjoyed cheering on the other campers.
I was reminded what a small world we all live in near the end of camp when the electrophysiologists switched off and Michele’s daughter’s pediatric EP came to camp to supervise. When we met, she asked me who my EP was. I told her, and she actually knew my EP well. She used to work in Canada, in the province to the west of me and met my EP at several conferences. She had even stayed in her house. She told me I had to say hi to her, so we took a photo together and sent it to my pediatric EP who promptly emailed me back filled with excitement. It was really neat that the EP looking after my little heart sister in another country thousands of kilometers away knows my own pediatric EP well.
At the end of camp, when all of the parents came each camper was presented with their own custom award. I was presented with the “Oh Canada… Award” for never complaining even when things were tough, being flexible, and being just as nice as you’d expect a Canadian to be. All week I answered random questions about Canada from stereotypes to the capital city, to what stores and fast food restaurants we have. The award fit me perfectly. I am incredibly glad I was able to have this experience. I truly felt as though I belonged and I will carry the memories I gained from this trip with me forever. Heart camp was an experience I did not realize I needed until I was already there. As an advocate in patient communities, I did not realize how truly alone I felt until I was surrounded by people who completely understood what I had been through and am going through. I also gained a second mom and a second family through Michele, which I am also eternally grateful for. The bond we share because of our similar experiences living with LQTS is something that surpasses all words and emotions. Both places felt like a home away from home even though I was so far away.
If you are a kid or a teen with a SADS condition reading this, consider going to heart camp especially if you are struggling with your condition or feel alone. If you are the parent of a child with a SADS condition, consider sending your child to heart camp. I was safe the entire time. Medications were supervised. There were AEDs on site. There was a medical magnet that could have been used to disable ICDs. There were even device programmers on site that could have read pacemakers, ICDs, and loop recorders. Multiple doctors were at camp around the clock fully equipped to deal with any cardiac emergency. I never felt scared. The experiences I had will help me going forward in dealing with my condition. I am so glad I went when I had the chance.