Describe what you see when you look into a kaleidoscope. Twist the end. Describe how the sparkling colors change, patterns emerge and evolve, and symmetry shifts. That’s the task before me as I try to describe my first Wildrose DAD conference.
Several years ago Rachel Thornton, a mom from Mississippi, came up with the idea of training a dog to help her daughter, Abi, manage her newly diagnosed diabetes. She painstakingly laid the groundwork for the rest of us to follow and she leads us still at her invaluable forum DiabeticAlertDog.com. In 2009 she started what has become a yearly tradition: the Wildrose Diabetic Alert Dog Conference, hosted by Wildrose Kennels in Mississippi with whom Rachel works closely. Each conference brings together existing DAD teams, trainers, teams in training, and people looking to find out more about DADs.
For me, it was two days filled with inspiration, disappointment, deeply moving stories, self-doubt, and thrilled exuberance. That’s a lot of emotion packed into 48 hours. My task over the coming days is to unpack and assimilate the experience into a new understanding of this journey I’m on and, hopefully, find a way to express it in this crude instrument called language. This will take some time.
The first story I want to tell is, perhaps, the most important experience I’ve yet had on this journey and definitely the most valuable.
It was early Friday morning. Everyone was sitting in chairs in the meeting center listening to Rachel inspire us with the heart-wrenching tale of her daughter’s diagnosis and early struggles with type 1 diabetes. Brenda, who I interviewed on the blog a few months ago, was sitting about ten feet away. Her diabetic daughter Laura was outside somewhere – out of sight and with all the doors closed. Their DAD, Daisy, lay asleep by Brenda’s feet. (Children with DADs often take breaks from each other and the parents take control of the dog.) Suddenly Daisy stood up, sniffed aggressively at the air and gently placed her paw on Brenda’s leg. Brenda looked down and asks, “Are you sure?” and Daisy repeats the movement. Seconds later, Laura coincidentally entered the room from outside and makes her way to her mother’s side. When she reached Brenda, her mom tells her to check her blood which she does.
You can guess what happened next – a big dog party! Lots of treats for Daisy, lots of praise and petting and Daisy is allowed to hold her beloved tennis ball for a while before settling down.
I don’t think I can describe all the emotions I felt. It was an extremely powerful moment and I felt privileged to be able to watch it unfold. I’m not afraid to say I got choked up and even now as I write this on the plane back to Boston I’ve got a sniffle just thinking about it. Prior to this I understood this amazing thing that DADs can do but it was an intellectual understanding – I hadn’t internalized what it meant to people’s lives. I’ll admit my emotional pump was primed that morning when I entered the building and saw an adorable little boy wearing a Superman cape. He couldn’t have been more than three. I said, “Hey Superman,” and as he turned I saw a pump identical to mine attached to his belt, looking absurdly large on his tiny body. The unfairness and cruelty of this disease hit me like a brick, with a deep sympathy for what these parents must experience on a daily basis.
Fast forward to Saturday afternoon. I was in a different meeting room with chairs spread around. Scott and three other trainers were observing Mya to see if they could figure out the source of her anxiety and come up with a plan to help her through it. This particular room was a scary place for her. We can never know what terror she was envisioning in her head but she was obviously distraught which is why we chose that room to observe her – something about the wood floor was not to her liking. Suddenly she started sniffing – no, snorting – very aggressively and walked over to Scott, smelling him all over. Mya then grabbed at the bringsel Scott always has hanging from his belt and tugged until he unclipped it and let her have it. She walked directly to the chair where I was sitting, thrust her head between my knees and dropped the bringsel into my lap, then sat at my feet with her entire rear-end wagging and a look of absolute satisfaction on her face, as if she was saying, “Look what I just did!”
My instinctual reaction was doubt. Over the years I’ve evolved something I can best describe as a subconscious risk meter that is always running in my head. It measures the degree of confidence I have that I know my current level of blood glucose. When I check my blood or eat a meal the risk meter is reset to zero. As time passes the risk meter goes up at a rate that varies with the kind and quality of food I have eaten and my level of physical exertion. This has served me pretty well and is a constantly evolving model. At that moment I felt confident that I was normal or high – it was only two hours since lunch for which I hadn’t needed much insulin and I had recently had a snack. I had checked my glucose only thirty minutes prior and was at a pleasant 98 – right in the middle of my target range of 85-120.
I stood up and checked my Dexcom CGMS and it said I was steady at 80 and had been steady all afternoon – no drama whatsoever. But if I trusted my Dexcom completely I wouldn’t be here – my internal system for recognizing highs and lows is dangerously imperfect and the Dexcom, while useful, has not protected me from some terrifying highs and lows. I pulled my glucometer from my backpack, pricked my finger, and applied a drop of blood. It read 57. I had just experienced my first DAD alert.
I was grateful for the need to praise and reward Mya because it made me focus outside of myself. But inside I felt like a ship tossed in a storm. I so often tell myself that I am in excellent control of my diabetes, and maybe I don’t really need a DAD – maybe I’m pursuing this for the wrong reasons. All doubt evaporated at that moment even as tears came to my eyes. The truth is that my grip on glycemic control is tenuous and hair thin. I work really hard at it – to the point of obsession. I get the best tools, I constantly refine my risk model, I eat very carefully. I was so sure I wasn’t low and I was prepared to tell everyone that this was a false alarm. I hadn’t even considered the possibility that I might be low – certainly not THAT low.
Hello. My name is Dave, and I can’t always control my diabetes.
The Dexcom never even alerted. The alarm is set to go off at 75. If I set it any higher I get so many false alarms that I start to ignore it. I chewed some glucose tablets and ate some gorp that I always keep handy and my glucose quickly recovered. The graph on the Dexcom showed not even a blip – it was a perfectly straight line like nothing had happened at all. The fact that in just 30 minutes I had dropped from 98 to 57 tells me that, had Mya not alerted, I would probably be in the 40s before the CGMS caught wind of the low and finally alerted me. What if I was in the middle of the woods, alone on a long hike? It could happen. It *has* happened.
This is the first gift bestowed upon me by the 2013 Wildrose DAD conference: resolve. I resolve that next year I will return to Wildwood with my own DAD where, for two days, my journey will merge with the journey of others like me and I will return home fulfilled and inspired.
There are so many more stories to tell from the weekend: meeting and spending time with Mya, getting a chance to meet and talk with DAD teams I only knew through Facebook, working with Scott and other trainers to understand Mya’s anxiety. There is much to tell – stay tuned!