Words by Daniel Alexander | Photos by Daniel Alexander and Jen Hanson
It took me years to connect with Connected in Motion. Literally, years. Not because I was too busy or for lack of events. But rather because I managed to totally isolate myself from the Type 1 diabetes community.
I suspect that being diagnosed so early (at 15 months) contributed to taking my Type 1 diabetes for granted. I really can’t remember a time before blood tests, injections, and carb counts. Growing up, very few of my friends were aware of my Type 1 diabetes, and I really wasn’t comfortable sharing. People would often say ignorant and hurtful things, as many T1Ds have experienced at some point. I mentioned my Type 1 diabetes so little throughout high school that a few of my friends seemed to think it had gone away. Later, one friend asked me if I still had Type 1 diabetes.
I’ve always been a bit embarrassed by it. Deep down I grew up thinking it was an extension of a deeper held shame or lack. We live in a world that embraces physical strength and confidence (e.g. athletes), and diabetes can weaken both, no matter how hard we try to control our blood sugars and eat right.
So even though my nurse practitioner repeatedly encouraged me to reach out to Connected in Motion when I brought up the topic of support, I consistently ignored her suggestion to do so.
I was intimidated by CIM’s website, which was my first line of contact. I saw active Type 1s doing all sorts of amazing stuff and was worried I wouldn’t be able to keep up. I imagine this reaction is not uncommon in people with Type 1 diabetes who don’t often share it with others AND feel the stigma of blood glucose performance anxiety.
And so for quite some time, I was scared to go out – afraid of being judged, of slowing people down if I made a blood glucose mistake or ruining the experience for others. I had a vision of being left on the side of a mountain, unable to go on or of running so low that I screwed up the excursion for good and for everyone else. After keeping my Type 1 diabetes hidden for so long, here it would be right out in the open for close scrutiny and judgment.
Thankfully Sarah, my incredibly supportive 5.5er, forced me out of my Type 1 diabetes cocoon. Of course, it had to be an event that was close by, fairly simple, and difficult for me to mess up. We found a 2-hour CIM bike ride starting from Todmorden Mills, around the corner from us.
This event was the first time I had been around so many people withType 1 diabetes since my early days at Camp Huronda. It was both strange and amazing- strange because I was so isolated and had internalized my diabetes for so many years and amazing because having Type 1 diabetes was so matter of fact.
The ride was so much fun! When Julie did a blood test in front of me I was floored – it all seemed so natural. I still shield my meter from interested onlookers; worried my number wouldn’t be “right.”
Not only did I have a super time and meet amazing people, but I also learned a lot. One of the pitfalls of isolation is that you can stagnate – my management hadn’t changed much for years. I can be quite old-school– I was diagnosed so early and did the same thing so long (MDI) that it worked well enough, even if it really wasn’t working very well.
There’s a big difference between reading about pumps and CGM and seeing them in motion, so to speak. Moreover, everyone was so forthright and welcoming from the first pedal to the after-beers, which gave me more time to learn about improving my management.
I was so excited about the CIM ride that we signed up for a more adventurous trip – the 5.5er Canoe Trip to Algonquin Park this past summer. We had never done anything like it, but based on the support and welcome I received on the CIM ride; I expected the camping trip to be much the same. It far exceeded my expectations.
The trip leaders were amazing and Jen and Peter are so inspiring. They created an environment that was at once safe and challenging – perfect for pushing yourself or learning new skills with others.
I was lucky – it was a small group of participants, which meant we could really get to know each other, help each other, and share.
We all had our ups and downs, our highs and lows; however, there was nothing but support throughout the trip. I didn’t end up screwing up the trip with my sugars. Nobody did because there is no such thing as screwing up with CIM – we all deal as best we can.
“Screwing up” won’t happen on a trip with T1Ds and 5.5.ers all of whom fully understand how difficult life with diabetes is. We shared stories, challenges, blood glucose results, and carb counts. I had tons of questions about CGM and pumps and got to see them all in action again, the good things and frustrating parts of new technology.
I think it’s fair to say that the 5.5er Canoe Trip to Algonquin was the inspiration and jumping off point for the rest of our summer adventures. Taking what we learned from this trip, we spent the summer day hiking every weekend along the Escarpment and went further afield to the United States for longer trips.
We borrowed camping gear from everyone who had it and built on what Peter and Jen taught us. We hiked in the Adirondacks, camped and hiked the AT trail in the White Mountains of New Hampshire and did the same in Virginia in Shenandoah National Park. I don’t believe that any of this would have happened, certainly not to the same degree, if we had not done the CIM trip.
But there’s more!
Between the cycling, canoeing, hiking, and camping I had an amazing opportunity to see CGM in action and learn the pros and cons from experienced users.
When I was back from our summer trip(s) I had the chance to demo and absolutely loved it – I purchased a standalone Dexcom CGM a short while ago. I think it’s fair to say that there is a direct line between my adventures with CIM, the support and information I received, and my purchase of a CGM system. My Type 1 diabetes management and peace of mind have improved significantly since.
I’ve also enjoyed every adventure so much more. My only regret is not connecting with Connected in Motion years ago!