I still vividly remember my loneliest diabetes moment. I had gone for a walk during a break at work. Suddenly I realized I was unexpectedly low, without sugar on hand. I was not far from work, but I was confused. All of the buildings around me looked familiar, yet strangely not right. I finally stumbled through the parking lot. The security guard saw me through the glass doors as my knees began to buckle. I kneeled on the sidewalk for a minute, scared. My knees were not working. I realized that this was some sort of extreme reaction to low blood sugar, a seizure, perhaps. It was the first time I had experienced such severe hypoglycemia. I willed my legs to walk and made my way to the elevator, thinking of the juice at my desk upstairs. Concerned, the guard asked if I was okay.
“Yes,” I said. Of course, that was the wrong thing to say.
I got into the elevator alone and went into my office, covered in sweat. I treated myself with the juice at my desk and recovered there alone, shaking from the adrenaline.
To anyone who isn’t close to type 1 diabetes, it’s difficult to explain how you can be fine at one moment and in the next one, feel your consciousness slipping away. It would have made a huge difference to me when I was newly diagnosed have known other type 1’s to talk to after my scary experience. During that time I did talk to my family and endocrinologist about life with diabetes, but having friends living with similar highs and lows would have offered a different type of support. There was no thriving Diabetes Online Community (DOC) then. It was hard to meet other people my age who lived with diabetes.
After living with diabetes for about 6 or 7 years, I did make a few friends with type 1 diabetes. I met one through the high risk pregnancy clinic where we both spent hours waiting for appointments every second Wednesday. We turned out to be neighbors and spent time together on our maternity leaves. Talking to another new mom living with diabetes helped normalize some of what I felt.
In more recent years I have begun to counsel and support patients with diabetes in my private psychology practice. In addition, I speak at educational events for health professionals in the field to promote the importance of psychological support in diabetes care. Now I know many people with diabetes. I have also discovered blogs and websites that are rich with information from people living with diabetes. There are people I consider friends online whom I have never met in person. This network of amazing people inspires me in so many ways to do more, for myself and for others living with diabetes.
So as a step to do more, I took part in my first Connected in Motion (CIM) event last month. CIM is an organization that is “breathing fresh air into diabetes education.” Its mission is “fostering a community of people living with type 1 diabetes so that they might inspire each other to live a life without limits.”
The event I took part in, as both a participant and a discussion leader, was Winter Slipstream, which took place at Camp Pine Crest in Torrance, Ontario. Chloe Vance, founder of Connected in Motion, named this annual weekend retreat “Slipstream” in reference to the experience of riding and drafting within a group of cyclists – a process wherein cruising together allows the group to cover ground faster, with less resistance, than any solo rider could on her own. Chloe says she realized then that being in a slipstream helped define the unusual situation of being in a group of type 1’s; everything diabetes-related feels easier because everyone around you is dealing with their diabetes, too. Chloe, and CIM’s director of operations, Jen Hanson, both specialize in experiential education. The principle of this approach is that learning comes from doing, and that people living with diabetes will learn from one another when they connect, share their experiences and embark on adventures together.
So, the 50 of us with type 1 diabetes participating in Slipstream made our way to Camp Pine Crest on a Friday evening, and gathered in the main lodge. I watched people chat at tables, thinking how unique it was that every person there, except the camp staff, was living with diabetes. There was a communal sharps container for needle and lancet disposal. There were stacks of juice boxes and glucose tablets in various locations. It was sometimes hard to find a misplaced glucometer because there were so many out at tables all the time. I witnessed people treat each other’s hypoglycemia with juice or glucose tablets, while hardly needing to say a word. Others commiserated on their unstable sugars after a day of travel. Over the weekend, people got to know one another as they opened up in discussion groups, skated arm in arm for balance, helped each other on the high rope courses, and laughed over great meals.
Learning happened throughout the weekend, although many participants do not even think of Slipstream as an educational event. The learning came from challenging ourselves to do something new or even watching someone else stretch themselves. Whether we were trying showshoeing for the first time, or getting up to speak in front of the group, or play the crazy Minute it to Win It challenges in a onesie, we were stepping outside of our norm. It happened during workshops indoors, and organized activities outdoors, but it also happened just as much during the time that wasn’t organized – on our way to these events, and in the spaces in between while warming up in the main lodge or in the common rooms of our cabins. It happened just by being connected with people who know what it is like to live with diabetes. Between us, we had 850 years of experience living with diabetes at the camp that weekend.
One of my favorite parts of the Slipstream weekend was the “5 Minutes of Fame” speeches at the end of the morning on Sunday. Six individuals took turns standing up to speak for five minutes. They spoke about their respective experiences running, cycling, competing in a triathlon and obtaining a pilot’s license. They were honest about the challenges, disappointments but also achievements. Each and every one of them inspired me. Some of us had tears in our eyes but we laughed, too, because there are funny moments with diabetes that we can all relate to. Virtue, CIM’s social media guru, described, exaggeratedly, the close call of almost resorting to eating old bread off the ground during a low. She had us all in stitches. I doubt it would have seemed quite so funny to a room of non-diabetics.
Then Terrence, a tall athlete in his twenties, spoke about his first year with diabetes. Last winter he attended his first Slipstream after only two months of living with diabetes. He ran a marathon the day before being diagnosed with diabetes. He has not stopped training and attaining goals since then. His accomplishments, like those of the other speakers, were impressive. But most striking was the optimism, humor and joy in his account of his first year. I was diagnosed in my mid-twenties, too, but never spoke to other type 1’s in those early years and if I had, I probably would not have spoken the way he did. Terrence is very resilient and connecting with a community of type 1’s right after his diagnosis has helped him tremendously.
Terrence described his life philosophy since being diagnosed. He pointed out that every day we all have many choices. The thing we all share in common is the thing none of us chose – diabetes. He said, however, what helps him cope is focusing on the fact that everything else in his life is up to him. Every day he is lucky to be making choices.
This philosophy is the type of sentiment that can be expressed only by someone who is supported and feels a sense of belonging. Connected in Motion is helping to make sure more type 1’s feel this way as they move through their years living with diabetes. Personally, I went to Slipstream to lend support to the organization and to meet more members of the community. I did not expect to make changes to my own diabetes management following my time there.
However, I came away with a renewed determination to lower my blood glucose. I am now increasing my boluses for starches and remembering to take my insulin ahead of meals more often (thanks Lorraine for that reminder!). And I adjusted my basal rates on my pump for the first time in months. These changes matter. My blood glucose is in a better range, meaning I sleep better at night (and, therefore, so does my husband) and I have more patience for the challenges of parenting my four busy, young children. These changes benefit me and also those close to me. I spoke to Chloe recently and she reports also feeling a renewed commitment to improving her blood glucose control since the Slipstream weekend. We marvelled at the value of the sense of community experienced at CIM events.
Peer support, like the medical and family support systems, is an important component of diabetes care. CIM is not only improving quality of life, it is helping inspire the members of its community to make changes to live longer, happier lives.