Contributed by CIM’s Social Media Master, Virtue Bajurny.
I’ve been helping manage Connected in Motion’s social media profiles for the past little while. As we make our way to the month of November, and the organization heads into its major fundraising event ‘Slipstream in the City’, I have been thinking a lot about people’s diabetes stories I have heard over the years I’ve been involved with Connected in Motion. I’ve been wondering: how do you capture the personal and inconspicuous moments that tend to make up life with type 1 diabetes? More specifically, without such backstory how possible is it to fully convey what it is that Connected in Motion has achieved for those living with type 1 diabetes?
Almost two years ago now, I remember sitting amongst the thirty participants of Connected in Motion’s 2011 Winter Slipstream, adding up our collective years of experience living with diabetes. The total was 686. 686 years of going to doctor appointments, speaking with diabetes educators, filling out insurance forms, refilling prescriptions, buying supplies, testing blood glucose, and logging numbers. That’s 250,556 days of knowing that a good blood glucose number can be fleeting, wading through knee-buckling lows, and treating sticky highs. That’s 6,013,344 hours counting carbs, calculating insulin dosage, and injecting medication. That’s 21,648,038,400 minutes of blood, sweat, tears, eating, sleeping, and breathing diabetes.
The pervasiveness of such realities seems hard to capture in a single tagline or snapshot. I love the status updates, photos, write-ups, and videos that inevitably follow Connected in Motion events, because they celebrate the fun, the social, and the successful moments of living life to its fullest with diabetes… but I do worry that sometimes the struggles of the road to those successes lays somewhat dormant in the background. To those outside the Connected in Motion and diabetes community, I’m wondering if missing the ‘before picture’ is maybe skews the larger picture of why the work and the people of Connected in Motion are so important.
To this end, I need to ask a favour: if you have a moment and are willing, I am hoping that you might share your story of life with diabetes and what Connected in Motion has meant to this life.
If you have your own blog, feel free to post there and let us know, so we can link.
If you have a Twitter or Facebook profile and prefer a short shout out (the Twitter hashtag is #CIMluv), this is also great.
Or, if you have something to say, but no place to write you can send it to me, Virtue, at getsocial (at) connectinmotion (dot) ca.
You may have just been supported by a post or a tweet, or maybe you’ve been on one of the trips and it had a great affect. Interaction and impact can be big or small.
Finally, I hate being in situations where people ask me to give something of myself, but are unwilling to do the same. I don’t like the power imbalance it creates; I don’t think it’s fair. So, in hopes of not being that jerk, I thought it only right to start here with myself…
Name: Virtue
Where: Born, raised, and live in Toronto.
What can you tell us about life with diabetes?
I was diagnosed almost nineteen years ago, just prior to my 16th birthday. I spent eight days in a rather abandoned pediatric ward, where I
was the first type 1 most of the staff had ever seen. I left on Humulin L and Humulin R, taking two injections a day, and following a diet where all my meals were measured and timed. As rapid acting insulins were developed I started on Humalog, before starting on an insulin pump four years ago.
Growing up with type 1 diabetes was very lonely. I was out of the pediatric system by the time I was diagnosed, so that none of the waiting
rooms or education sessions I attended included people with type 1, my age or otherwise. At first this seemed inconsequential, but then I remember one afternoon toward the end of high school. I was standing in the kitchen, on the phone with someone from the Canadian Diabetes Association. I was asking them what means were available to meet other young people with type 1. I was almost in tears as he told me that they had nothing… in all of Toronto, the 5th largest city in North America. After that I talked myself into believing that having diabetes wasn’t a big deal. I still tested my blood and took my injections, but once that was done I erased it, like diabetes was never there.
Complicating matters was that injections were turning into a nightmare for me. A combination of being extremely sensitive to insulin, the inaccuracy of dosing in half or whole units, and a series of then undiagnosed gastrointestinal issues meant that I had a lot of bad lows. It was typical for me to experience three to four hypos a day, all well below a 2.0 mmol/L (54 mg/dl). My healthcare providers did the best they could to help, but nothing seemed to curve the lows. Secretly, I found a partial solution: stop eating during the day, and stop taking rapid acting insulin.
I don’t pretend to think that was anywhere near ideal, but at that point I was so isolated and tired of it all I did not care. Things eventually turned around when I started on an insulin pump and got things sorted with the foods that were bothering me, but the thought of ever going back to MDI’s still makes me queasy.
How did you come to your first event at Connected in Motion?
Going on an insulin pump might have been great for keeping my blood glucose up, but wearing it 24/7 made it much harder to keep up my game of forgetting I had diabetes. Suddenly I found my head in that space of my parents’ kitchen, hanging on the phone, searching for connection again; ho
wever, this time I was in my own place, on a computer, sifting through the web. Fortunately, the disappointment of many years ago did not repeat itself, as this time I seemed to have found an answer to my search. I remain unsure as to what possessed me to sign up for the first annual canoe trip with Connected in Motion. I was never an outdoors person, nor was a in any way fit at the time. I had no idea what this organization was and I did not know anyone on the trip. Perhaps I was feeling particularly brazen. Perhaps the excitement of the possibility of finally meeting others like me overruled my usual logic… Whichever the case I know this one thing to be true: the thought of my going away for a weekend in the woods with a bunch of strangers I found online scared the crap out of my parents. I did it anyway, and it turned out to be one of the best leap of faiths I have every taken in my life. Which I will tell you about here…
What has Connected in Motion meant to you?
If wearing an insulin pump made it difficult to forget that I have diabetes, being around a group of other people with type 1 diabetes made it impossible. It forced me take a look at what I was doing to myself in the process of that practice. I noticed on the first outing that I had a bad habit of asking others if I could stop to test my blood, treat a low, or take insulin. It disturbed me to think that I had gotten into a habit where I felt the need to ask other people, who generally don’t have diabetes, permission to do the things I need to stay alive. For me I feel like these were things were only the surface of hiding and forget a part of myself to feel like I fit with ‘normal’ people. So, having a space to realize this and let it go no only made me feel less alone, but also allowed me to be myself… at first with others with type 1 and then I think more generally.
That in and of itself is something of note, but considering my original purpose in getting in touch with Connected in Motion was to deal with social isolation I don’t know that I found it terribly surprising; the surprising part is that I found out I really like sports and being active. I had been somewhat active before I was diagnosed. I remember I briefly joined the swim team at school and I enjoyed running to some extent… but what little I was into those things died when I was diagnosed. There are two parts to why I think this happened: (1) it became much more difficult; (2) there just weren’t enough role model athletes with diabetes to make me believe that being active with type 1 was something possible. So, I just resided myself to the fact that I was ‘sick’ and unable to do certain things.
Going to Connected in Motion events challenged these assumptions and surpass them. Being active with a group of people with type 1 diabetes made me realize that exercise and diabetes is always a bit of crap shoot. You can do everything right and maybe even figure out how to be on target the majority of time, but lows and highs are going to happen; you just have to be prepared for them. The other advantage of my learning about activity within Connected in Motion is that there is a fairly wide range of ability within groups, from casual outdoors types to people who run marathons. This mean you can find people of a similar level, but also look up to and connect with those who are doing things you might find more challenging. In the end, without Connected in Motion bringing people together I never would have joined a lacrosse team, I never would have started running regularly, and I think generally would not have been willing to challenge myself to try new things.
So, if you want to know what Connected in Motion means to me: it means a space to figure out how to overcome my lows and highs; it means a group that supports me through the challenges of living well with diabetes; it means a place I want to give back to; it means a community that gives me the confidence to proudly be myself.
Now that is my story; what is yours?
