Wild Heights, New Faces, Shared Troubles, and a Path Forwards.
The summer had been busy, including (but by no means limited to) a long overdue holiday and plenty of days soaking in the waters of a nearby loch. I had been able to spend time with friends and family and even after returning to school, I had the opportunity to take part in a “Doctors at Work” course.
Considering the fact that the year had started with me being diagnosed with a severe infection around my heart, it was beginning to look like 2012 might end up being not so bad after all.
However, my scans were all showing that, whilst the infection wasn’t getting any worse, it was receding at a much slower pace than the doctors had been hoping to see. It was their opinion that we should start exploring other options.
More Important Matters
Fortunately, there was something coming up that would help take my mind off having to make a decision for at least a little while longer. I was heading to London to take part in an event hosted by the British Heart Foundation.
The Weekend Stunner.
I had been to my first event with the BHF the previous year when a group of young people with heart conditions had been given the opportunity to attend a concert at the O2 Arena. It was a fantastic experience but there hadn’t been much free time to get to know any of the others.
The Stunner was to be different. It was a three day residential event that would allow us to take part in activities and (hopefully) establish some new friendships.
Given that most people I had met up until this point with a heart condition had been somewhat older than me, this was particularly exciting.
One issue that presented itself was that I was currently on medication that my parents had to administer every evening. There was no way for me to do it myself and even though there would be medical staff at the event, unless they had the specific training for this drug, there would be nobody else who could do it for me.
Thankfully, when we spoke to the organisers of the event they were happy for one of my parents to come along. In fact, it turned out that it wasn’t unheard of for that to happen anyway when people were travelling longer distances.
It was decided that my mum would be the one to accompany me. She and dad routinely had separate things to do when it came to preparing my medication and it was easier for me to take over dad’s tasks. He’d also been with me on the previous event so it was mum’s turn anyway.
With everything sorted, we were on our way to London.
A Heart for Adventure
It took two train journeys to get from Inverness to London, the second of which was invaded by a particularly excited (and very intoxicated) hen party. They all seemed to be having a wonderful time, except the daughter of the bride-to-be who spent most of the journey looking mortified and apologising for the rest of them.
If nothing else it made for an entertaining trip until we finally arrived at the station. Some of the other people attending the event were already there with a few of the organisers. There were a couple of other people still to come and once they had arrived, we piled into a convoy of taxis and made our way to the Gilwell Park, the activity centre that was hosting the weekend.
This was over ten years ago so I’m not sure how much the place has changed but a quick look at their website tells me it isn’t too different from back then. It was a massive mansion-like building set in huge grounds with a small lake and plenty of space for the various activities they had on offer. From rock climbing, to kayaking to an enormous zip wire.
At the door my mum was shown to her accommodation and I was taken off to an introduction meeting. It didn’t last very long and we were quickly left to mingle and meet other people.
It was incredible because aside from a few medical staff wandering around, you wouldn’t have known that this was a room full of kids with heart conditions. A few people had more obvious signs of health issues but even then we were all just a bunch of teenagers awkwardly trying to speak to each other.
After dinner we had the option of watching a movie, the newest Avengers film (which at the time was just The Avengers). I remember making friends with somebody over a bag of midget gems and to this day we still occasionally make reference to those mini jelly sweets.
In the evening I got chatting to the guys I was sharing a room with and we all got on really well. There was one lad from Ireland and we quickly realised that our two countries shared a lot of slang.
What followed was a fast paced conversation that must have sounded like absolute nonsense to the rest of the room.
Before the evening meals, I would sneak off to the other side of the building for my daily infusion of antibiotics. My mum had been given a room in the complex and had everything set up and ready for me when I arrived. We were able to get it all done very quickly and she would urge me to get back out amongst the others.
She was spending her days wandering the expansive grounds, avoiding groups of teenagers, and getting to know some of the staff at the event. I was happy that she was finding things to do and wasn’t just waiting on me showing up for my medicine.
A Dramatic Ending
As for me, I was spending the days throwing myself down zip wire courses and scrambling up climbing walls. One frustration was the fact that they didn’t want me to go kayaking because of the line in my arm. I argued that I had a waterproof cover but they weren’t going for it.
Still, despite not being able to show off my skills on the water, I had a fantastic time, as did pretty much everyone at the event.
One of the main focuses of the weekend was a drama workshop in which we were separated into groups and challenged to create a short scene depicting our feelings about living with heart conditions. At the end of the weekend we would perform these for family members.
It was an interesting experience. My group of six opted to have three people depict the limitations these conditions can have on our lives. One followed somebody around at a distance, another (played by me) lingered just over someones shoulder while the final one of us physically held a third person back.
At the end of the event though, it wasn’t the things we had done but the people we’d had the chance to meet and share stories with that truly mattered. To this day I am still friends with people I met at that event. We even meet up occasionally, although geography isn’t on our side with that.
As it happened, one of the other attendees had been diagnosed with endocarditis (the infection I was fighting) a few months before my own diagnosis. He had undergone surgery to have it fixed and was now back to being his old self, free of antibiotic treatment and all the limitations that brought.
The last day of the event was an emotional one, as we all expected but I don’t think any of us realised just how strong the bonds made over those couple of days would be. It was very upsetting to be saying goodbye to people that we likely would not be seeing again for a long time.
Even so, there was not a single regret in my mind about going on that event and as we settled down for the long journey home, my mind turned to the future and a decision I would need to be making very soon.
- When your blog post has already gone on longer than normal, there is really no need to extend it by adding a “wisdom” section.
Your readers will thank you.
- That being said…
I do want to point out how important it was as a teenager to be able to meet and talk with people of my own age who were going through similar situations. Being able to share stories and feel like people really understood where I was coming from, it was an invaluable experience.
Obligatory Blog Quote
All the best stories begin with a train journey.I’m afraid I cannot find who said that.