It Began with a Discovery

By Cale Allen

Cale was diagnosed with type one diabetes in 2003. They have been a camper and a staff member at Camp Discovery and Camp Huronda, the Ontario D-Camps Operated by Diabetes Canada. They are also on the board of the Pride Camping Association-a non-profit organization prioritizing inclusivity of 2SLGBTQ+ people in Camping across North America. Cale is currently in their Undergrad at the University of Waterloo studying Social Development Studies specializing in the area of Social Work.  Cale has a passion for working with and supporting others in their community.

This may be the most telling way to illustrate what it is to live with diabetes. Diabetes may just be the thing that saved my life, as ironically, I found consistency in the ever changing, ever fluctuating experience of this disease. With this being the 100th anniversary of insulin, it is a privilege for me to be able to say that. There are still so many people globally who cannot access insulin the way that Frederick Banting had intended when he discovered it all those years ago.

 My compromised health began when I was a toddler. Not with diabetes, but with viral asthma. By the time I was four years old, I had experienced three hospitalized asthma attacks. In each attack, there was a very short window of time where my breathing went from coughing and wheezing to my bronchial tubes closing all together, restricting any ability to breathe. This is what happened during my last asthma attack: my bronchial tubes closed. My Grandma, who was a nurse, told me when I was older that she looked at the heart monitor and for a moment, my heart had stopped. With a hard-working team, and an IV bag of prednisone, my tubes opened. The breath that welcomed me back to life was very much a symbolic entrance into the life of adversity to follow. Within a year of this attack, my specialist told me I had outgrown my asthma, which was a huge relief to my family who were always waiting for the next attack to happen. What a paradox it was to later find out that my family had no history of diabetes and that the same prednisone that saved my life could also have been the catalyst to my faulty pancreas.

My sixth birthday would be my first without asthma lingering in the background. Being a June baby, I was so excited for a backyard birthday party. Our house had a raised deck in the backyard where my Mom often stepped onto from the kitchen and called me inside from playing.  This time, I remember her calling my friends and me in for birthday cake. All of my friends ran to the stairs, rushing inside. I stood at the bottom feeling nauseated, contemplating whether I could make it through the singing and eating cake. My newly six-year-old self took a breath, marched up the stairs, and carried on with the rest of the evening.

The infamous 6th birthday party

The ill feeling did not stop there. I was so thirsty all the time and began wetting the bed every night, even though this had not been an issue for quite some time. My Mom had read a magazine article explaining the symptoms of type one diabetes and took me to the doctor for tests. On Friday the 13th, the doctor called and told my Mother to drive me to the hospital immediately. There they confirmed my doctor’s findings, and on that day I was diagnosed with type one diabetes. I was a very optimistic and happy child even though I was quite sick. I actually remember my time at the hospital being quite fun; I reckon my parents would beg to differ. The staff were all so kind. They read me stories on their breaks and took me to play therapy, where I learned about injection sites through doll making.

My art skills did not necessarily age well…you can see the ink is smeared from using an alcohol swab on the dolls arm to practice injecting insulin

Every three months since I was six years old, I have received blood work and meetings with my diabetes team. My paediatric diabetes team always felt like a family to me. I loved seeing them, hearing about their lives and sharing mine. One day at the clinic, my endocrinologist, Dr. Stein, told me about Camp Discovery, a camp for children with type one diabetes. My parents were on board as Dr. Stein would be there as well, and I have gone to camp alongside Dr. Stein every year since I was nine. This is the place where diabetes stopped feeling like a burden and started feeling like a safety net. It felt like a community onto which I could fall back, when the lack of awareness in my everyday life became too much. It was a community of like-minded individuals that I could turn to and remind myself that despite feeling alone, I most certainly was not. At camp I was unapologetically myself. Those five days were everything to me. From the moment I left, I counted down the days until I returned again the next year.

Dr. (Robby) Stein and me, as a camper in 2010 at Camp Discovery.

As I got older, camp was my safe space. Throughout most of my childhood and into adolescence I became so used to putting on a front, that I did not even realize how much I was living my life for other people until I would return to camp. There’s just something about it      that reminds me of who I am. The more I returned, the more relationships I would create and maintain outside of camp too. My friends and I would reunite after emailing back and forth all year and have heaps of fun. And our favourite thing was having life chats. It became a tradition with some of the nurses where we would have an evening with them to discuss being teenagers while also gaining much needed medical knowledge too. Then the last night would roll around and I would find myself overwhelmed with sadness. Thankfully, I was able to confide in the medical staff members who had helped me process my emotions and connect with Dr. Stein about support systems outside of camp.

And nine years later, my fifth summer on staff.

Many people do not see the emotional toll that diabetes takes on a person or notice that aside from having a 24/7 autoimmune disorder people living with diabetes are still human beings with lives. I now understand that the “overwhelming sadness” was actually an anxiety attack that would occur as I tried to process going home. It was a daunting feeling that I would have to go back to pretending to be happy and always trying to be perfect, while living in a broken home. For some, not having the same type of external support to aid in the stress they dealt with at home, summers often consisted more of partying and substance abuse. This could have been my route too, and I have been close, but the connection I felt to the diabetes community and camp was stronger. Many young people living with diabetes who have struggles in their personal lives tend to stop caring about their health or diabetes management. In my case, I knew caring for my diabetes meant my parents would continue to allow me to go to camp and spend time with the diabetes community.

When I could no longer attend camp as a participant, I eagerly applied to be on staff.  I was ecstatic that as a staff member I could work at camp all summer long. I had the opportunity to work at Camp Discovery for a week, as well as Camp Banting and Camp Huronda counselling for the other weeks of summer. Each camp was so different, and I loved that. Camp Discovery is my home, so there is a sentimental feeling largely to do with the strong backbone the medical staff have created. Over the years, many program staff from Camp Banting came to work at Discovery. At Banting, it was so cool to see those same staff in the place they considered home. I got to learn their traditions and how they had impacted them, much like Discovery had for me. Camp Huronda was especially magical when I arrived for the first time. I had always wanted to attend as a camper, but the distance and additional cost on top of Camp Discovery was not feasible for my parents. At Huronda, my skills really flourished. For someone like me, who is always eager to try new things and challenge themselves, Huronda had the ability to provide that. Here, my leadership and outdoor skills, among many others, were given a concrete base to build on. Working at all three camps meant that I saw hundreds of people over the course of a summer who were living with type one diabetes: program staff, medical staff, campers, and their families. It was more common to assume someone was living with diabetes than not.

 One of my favourite memories working at family camp was the summer I had a family with a child who was diagnosed with diabetes months before at the age of six. Being my social self, I happily shared my story with them. At the end of the week, one of the parents approached me and broke down crying. Through tears, they thanked me for helping and giving them hope. I was still just a kid myself and wracking my brain, trying to remember what I had said that made such an impact. I hold this memory close to my heart now and remind myself that sometimes the power of sharing your story is enough in itself. For almost three months of the year, I not only got to change others’ lives, but have my life changed too.

So, you are probably still wondering about the whole “diabetes may just be the thing that saved my life” and perhaps it’s actually the connections with the diabetes community that did. The people I have met over the years saw something in me and made space for that person even when I could not myself.

 In 2016, for the first time in my life I had the opportunity to learn about 2SLGBTQ+ people during staff training at Camp Huronda. Being from a Catholic, Conservative background I knew very little about the community. My mental health issues had continued to persist over the years, and I still heavily relied on a handful of people at camp for support. By 2017, I was able to come to terms with my gender identity and came out as transgender. The months leading up to summer 2018 were difficult, many people at home questioned me, or ignored my identity all together. I was tired of explaining myself and worried that returning to camp with my new name and pronouns would change everything there too. What if it would no longer be my home? Or, what if the people who had known me for over a decade would not accept me and treated me differently? Fortunately, my anxieties were so far from the truth. Camp showed up for me like it always had, staff and campers alike.

Thinking about camp is like receiving a warm hug from a loved one, you always miss it and wish it could last a little bit longer. Camp gave me more than my wildest dreams could have imagined as a person living with type one diabetes and for that, I am eternally grateful.