Chapter 4 - Tough holidays


Salutations, my minions!

My last chapter was focused on my new life at home and at school after leaving the hospital in 2003. But as you all know, diabetes is a 24/7 never-ending condition. So, I had to adapt my holidays as well. Before my diagnosis, my parents would send my brothers and I to holiday camps for the first part of the summer while they worked. We would have our family vacation all together in the later part of the summer. Among all the places I have been, I have my favourites, like the equestrian circus camp, called Cocico, where we would learn not only to ride horses but to jump on them and stand on their backs while they ran around the giant tent. We would sleep in gypsy trailers, and wear colorful costumes. There, I learned how to juggle, balance a plate on a stick with my nose and all kind of fun circus things. Holiday camps were a great way to find new friends, experience new things, relax from the school year and prepare for the new one to start.   

My first summer as a diabetic, we decided I would return to a regular holiday camp (I had been there a few times before being diagnosed both in winter and in summer). It was in the French Alps, in Châtel to be exact. As I was now old enough, they were proposing all kinds of new activities, like hiking with mountain dogs, camping, rock climbing, etc. Not only were those activities new for my group age, it was also a first for me in the sense that I had never left my parents for so long since my diagnosis. But I wasn’t scared, I was incredibly excited. I felt like a grown up. I would do so many incredible things and on top of that, I’d be able to prove to myself, to my parents, to the world that I could still do anything I wanted with my life. But the owners of the camp rejected my application. Because where there used to be a blank in the space reading “Illnesses”, there now was “insulino-dependant diabetic”. They were concerned about being responsible for a sick child. While I do understand their difficult position, I was deeply hurt, and felt there was a great injustice done to me. I hadn’t asked anything to happen to me. Diabetes just… happened. Did it mean that I had to be separated from my brothers and my friends for the rest of my life? Couldn't I do the same activities as everybody else? My mum was furious and fought for me to be accepted. She wanted to make sure I wasn’t being treated with prejudice. She is, always was, and always will be, a lioness protecting her cubs. She took an appointment at the City Hall (this camp was organised and managed by the Council), where a lady from the mayor's office sided with us and vouched for a nurse to accompany me.

 

I need to make a little parenthesis here: I later learned that that lady from the mayor's office was diabetic too. She had decided to keep it private because she knew people had a different behaviour when they knew. She was not concerned about her diabetes affecting her professional life, she had learned to control it. What she couldn't control is how people's opinion of her would change. Even without meaning to discriminate, people take it upon themselves to "protect" you, to "keep you from harm", or just assume you cannot do your job the way you're supposed to because you "are weaker". She was single and lived by herself. The nurse she had hired to accompany me to camp was her close friend and they had an arrangement where the nurse would occa sionally drop by to check up on her. She was the first diabetic adult I met and she was functioning like a normal, healthy, happy person. That comforted me in the idea that I was still the one in control. I could decide to tell about my condition or to keep it private. It also helped me realise that I will be able to have incredibly strong friendships with people who would care about me and know what to do to help me, if I happen to need it. I realised I didn’t have to be scared about growing up. I needed my parents' help and support as a child, but I would eventually be able to cope on my own, and that was very important for me to realise.

 

To go back to the summer camp, I was finally allowed to go, the only condition being that the nurse would not leave my side for the duration of the camp. I was grateful to be able to go, but I was a bit concerned about being the odd one out. If the past year had taught me anything, it was that being a preteen in high-school sucks and that being a diabetic preteen in high-school sucks even more. I stood out, and even if I hadn’t been bullied for my illness, I could definitely see a difference of behavior. Some kids would avoid me, some other wouldn’t know how to relax in my presence, I would often be awkwardly stared at or whispered about in the hallways. Luckily, some other decided that I was still cool enough to hang out with and became my friends. I could only hope that it would be the same in summer camp, even though having a nurse shadowing me was not really going to make me blend in. I decided to face this new challenge with my usual bravado. I ignored the stares and the under-the-breath mean comments, and focused on being me. I eventually made friends and I could enjoy the activities prepared for our enjoyments. One of the biggest activity planned during those three weeks was to go hiking for about 6 hours, make camp at the top of the mountain, sleep there, hike down the next day. I was, like all the kids there, really excited for that specific activity. I mean, who doesn’t dream to sleep under the stars, at the top of the world? It sounded magical. However, as the preparations for the big day approached, the directors of the camp had a talk with me. They had decided not to let me go. They said that getting me out in case of an emergency would require a helicopter, and they didn't have that kind of insurance. I remember that the nurse displayed my past few weeks' records in front of them to show them that I had no reason to either go high or low and in any case, she would be with me, monitoring my sugars so she could react early if needed. They were unyielding. They had made up their minds, there was no changing it. And again, to be honest, I do not blame them. They just didn’t take a chance on me, because they had too much at stake and they didn’t know any better. I simply wish I had been able to go. Instead, I had been left behind in the empty chalet. They all left in the morning by foot and I remember I could hear their laughter and songs echoing all over the mountains for hours. And I was alone with the nurse in the garden overlooking the mountainside, passing time by painting an oversized papier-maché camp mascot. I felt cheated and wronged. But I couldn’t really do anything.

When my doctor had learned that I was going to camp, he had made me swap my vials and syringes for pen injections instead. He had said that they were smaller and less fragile to transport, it would be a lot less work for me to do at each meal and allowed me to have a less obvious interruption from normal life. And while I was grateful for the change, I felt, in that miserable moment, that it had all been for nothing: the pen injections and my mum and the nurse fighting for me… I was not alone in the fight, I had people backing me up. But there was nothing any of us could do. I was diabetic, and this fact alone was enough to exile me to the sidelines…

 

I sincerely hope that today, because or thanks to their experience with me, they know better and are able to better deal with similar situations. I am not only talking about the directors. I am talking about the council. I am talking about the kids. I am talking about their parents, who can educate and open their minds. I am talking about the regulations and the people behind it. Everybody is responsible. It takes a village, right?

 

(Just a parenthesis here, about regulations: do you know that I can be kept from working in the armed forces, fire and ambulance services, or as airline pilot and cabin crew. The decision is left to the employer’s discretion, meaning they can refuse to hire me just because I have T1D. That's not normal. It is unfair and it shouldn’t be enforced. At least, not like that. There should be some sort of case that we can make for ourselves to show that we have control over our disease and that we can function and that we can be in high risks situations and we can save lives and that we can. We can. We can. We can.)

 

Anyways, I will talk more about this issue another time…

 

My brothers and I were never sent back to that summer camp. My parents grudgingly boycotted the directors of the chalet and said that we would be better off anyways. So they went back to the boards and looked for ideas for the following year. And that’s how we found out about the young diabetics camps…

AJD, the French organization for young diabetics, printed a monthly little gazette, which kept us posted on the newest glucose monitoring devices, the latest discoveries in diabetic research and also, about holiday camps for young diabetics. We were so happy to discover that I could go to a camp where my diabetes would not make me stand out, where we wouldn't have to fight just to get me in, where they would have the equipment, knowledge and expertise to accommodate my needs. And so, we applied straight away. These camps aim to train the kids to be independant and unafraid of their ilness. It also opened their doors to the parents so they could learn too, in a neutral environment, outside of the hospital or a doctor's pratcice., surrounded by parents who were learning too. My parents unfortunately couldn't make it this time, as they both were working full-time jobs.

 

Going there made me bond with many kids in the same situation as me, it made me feel like I belonged. I didn't feel ashamed of being different because, there, amongst them, I wasn't. What I strongly believe now is that being unique makes us all ‘different’, diabetic or not, that is why we are called individuals. That's the beauty of mankind. But as a kid, I hadn’t yet adopted that philosophy. I was just a kid. I found it hard I to accept that I was standing out more than your average Jane. Anyways, on my first day there, during our introductory meeting, I was listening with one ear, fidgeting and I bumped my knee on a stone wall and opened it on a rock. It was right on the patella and the pain made me feel dizzy. I shot my hand in the air and said I wasn’t feeling right. In an instant, everybody was alert, as they were all trained to assist in case of hypos or hypers. I knew it was not a hypo but I only had time to say that I didn’t feel well. I was immediately taken care of. They were all so quick to respond, I was amazed. A supervisor made me sit down, checked my sugars and waved away the juices and sugar beans from the concerned adults who were handing them to me. "I’m ok… I'm not feeling low, I'm just hurt" I explained. She laughed. "I'm ok. I'm just hurt." This might give you a little idea of how a hypo feels like to a child. We don't mind getting hurt on the knee, having so deep a cut that we almost faint from the pain. But we do mind the hypo. She took me to the infirmary, cleaned the cut, put a dressing on it and sent me on my merry way.

 

That lady who took care of me that first day, I later found out she was a diabetic too. I was impressed that she was allowed to have the responsibility to care for us, even though she was suffering from the exact same condition. It made me proud and it gave me hope. About a week in, she suffered from a very low hypo and had to take the afternoon off. The other adults didn’t make a big deal out of it. They checked on her regularly but when she got up again and was back to her usual self, they treated her exactly as they had been before. Nothing had changed. She hadn’t lost their respect as a carer, nor their trust, nor their friendships. They did take care of her when she needed but they knew she was as capable as them in her normal state. She was my new hero. She had a normal life, a normal job. Responsibilities that she wasn't afraid to tackle.

 

Those two experiences I just described were both necessary for me to accept how my diabetes were going to be seen by the world. From that, and other numerous experiences, I learned that even though I could not control how people would react to my illness, I could control if and when they would be made aware of it, I could control who to tell and who no to. I could control who were my friends and allies. I realised that if I consider that I am being treated unfairly, I have the right to speak up and put people in their places. A right that today I consider a duty. There is more than one way to do things, and if I am being told that I cannot do one thing, I can always do it my way. Write my own rules. Remember that YOU are the one going through all that. Never accept someone telling you that your illness is an inconvenience to THEM.

 

That concludes this chapter: diabetics do have abilities, dreams and a future. Do not judge us by our moments of weakness, or we might just do the same for you.

 

Mic dropped, Jules out.

 

- J