The Importance of the Diabetes Community

This is the second in a series of five pieces that I wrote for Omnipod's Suite D blog. Part three is live on Suite D now and will arrive here next month.

It's a paid freelance gig, you can read my disclaimer about that on part one of the series (link below), 

Part 2: Finding Support

My bedroom was pitch black and the house completely silent. It was well after three in the morning and I hadn’t been to sleep. My belief that my daughter Arden’s blood sugar would rise to a safe level was tenuous that evening so I was watching over her even more than usual.

When I fall asleep the likelihood of me waking up when I need to is slim. So on nights like this one I tend to just stay up. This night happened before we became continuous glucose monitor users and I would periodically walk from my room to hers to check her blood sugar. Each time I climbed back into bed, I became a little less certain that I could stay awake. Because my wife was sleeping I was trying to stay still, my eyes were sore from a long day that was getting longer. I had to stop watching television on my laptop, because it felt like there was sand in my eyes. I was exhausted, bleary-eyed and pretty sure that I was about to nod off – so I opened my Twitter app and, perhaps out of desperation to stay awake or maybe in an effort to not fall apart, I told who ever may be out there what was happening.

A few silent minutes later, I received a response from a woman whom I’d never met. She told me that she was also sitting up watching a blood sugar that she didn’t quite trust. That was it really. We didn’t talk much or offer one another solace. It was sort of a, “I’m here doing this thing and it’s getting the best of me.” And a reply that basically said, “Me too.”

I closed my laptop, the abyss of the night enveloped me and I began to sob tears of relief.

I was buoyed by the notion that there was another person in the world that was doing what I was and suddenly everything felt better. I learned that night that it isn’t the diabetes that made me feel alone and it wasn’t the darkness that caused me to want to reach out; I was being oppressed by the feeling that no one understood our life.

And just like that, with a tweet, I found sameness with someone that I couldn’t see, hear or touch. My diabetes community expanded. No longer would I have to wait for a JDRF walk to talk to a person who understood my life. Supportive glances, understanding words and the satiation that sameness brought, they were all I needed to feel recharged. Support came that night, but not in the form of mentorship or advice. This wasn’t a plan for counting carbs or talks of how to best prep a pump site. It was simple, beautiful and kind. A brief encounter with a person who had walked in my shoes and reassured me that I was not alone.

I’ve learned diabetes jargon, gathered information about insulin pumps, medications and ways of handling type 1 diabetes from the diabetes community. They’ve taught me with their openness to be comfortable with others being my rock when I can’t do it for myself. With the help of these wonderful new friends I began to see a light at the end of a tunnel, I was beginning to believe that it was possible for us to find our way back to feeling normal.

Read 'The Importance of the Diabetes Community Series
Part 1: How it Saved Our Family
Part 2: Currently Reading
Part 3: Coming in April
Part 4: Coming in May
Part 5: Coming in June

Feel what it’s like to wear the OmniPod – with no obligations. Click here to order a free Demo today.

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The Boy in the Red Hoodie

Every spring the parents of our town's Little League baseball and softball players get together to clean up the fields that the children play on. I normally bring my backpack blower and help with the leaves that are leftover from the fall.

A few people bring their children, but for the most part kids are usually left at home. 

My blower is crazy loud and so I wear noise-cancelling headphones while I operate it. The headphones, combined with the music they play, have a way of mixing with the vibration of the blower to create my very own sensory deprivation chamber. I can't hear anything but the music and so no one ever tries to speak to me, it's as if I'm invisible.

Eventually my blower ran out of gas and the illusion of being alone was lifted. I looked up and saw a little boy in a red hoodie playing by himself in the grass of the outfield; he must have been all of four years old. I watched him play for a few moments; he appeared to be off in his own world. He spun in circles and was talking out loud to what seemed like imaginary playmates - his parents off somewhere helping with the clean up. The site of him was heart-warming and yet, I was also crushed by the carefree nature of his joyful abandon.

I couldn't stop myself from wondering if his parents knew how fortunate they were to be able to let him run on his own, without worry. I tried to remember what it was like to not feel that pressure in the back of my head - do you know where I mean - it's the point where my skull and my spine connect. That pressure of concern and vigilance, the feeling that you are always guarding against something that may or may not be coming. It's the omnipresent tension of readiness to act, coupled with the intensity of constantly having to assess and reassess your surroundings and situation, so you can be ready at a moments notice - for anything. An ever-present and exhausting state of fight or flight.

In an instant I felt ashamed for wanting the boy's parents to know how I feel. It was a mad rush of conflicting emotions that left me confused. There was a part of me that wanted to tell his parents how lucky they are, I wanted to beg them to cherish this small, yet wonderful moment. I wished I could convey to them just how jealous I was so that they could know how fortunate they are. My shame deepened when I recognized that my jealousy was a despicable conflict of the love and admiration that I have for my daughter and the intense way that I want type I diabetes to not exist. I watched the boy for a second longer as I wondered if my daughter will ever get to feel life so simply ever again, then I lifelessly mumbled 'fuck' under my breath and walked away to refuel my blower.

When I returned to the leaves my moment of jealousy had passed and I began to think about all of the dozens of people on the field. What challenges did their lives hold that I am not aware of? In just a few minutes of consideration, I realized that each of the people at the park likely had countless life issues. As I tried to imagine what those challenges were, I recognized that they could be marital, health, financial, family, and on and on. The more I thought, the more I could imagine - and the less feeling jealous about the boy in the red hoodie seemed reasonable.

Feverish thoughts of love and life

Maybe it was the fever, but being sick this week made me think about my family in an oddly morbid, yet thoughtful way. I was on the second floor of our house trying to weather the storm of what ever virus had grabbed a hold of me. My back hurt, my stomach was in one giant knot, I was feverish and for a number of hours had a genuine concern that I was more then just sick. At the height of my worry my children began to arrive home from school. Kelly worked from home this day so she was on the main floor to greet them and take care of the afternoons events. I was trying to find a comfortable position and get the sleep that I hoped would drive away all of these terrible aches, pains and concerns when I heard Cole come home from school.

I have these great conversations with my son Cole each day after school. He walks in through our garage, most days full of energy, then we talk about his day. He almost always tells me about some silly thing that he and his friends did, we go over test and quiz results and there is always a moment when we hug. Frequently we take the talk outside, throw a baseball around for a few minutes, and wait for Arden to get home. It's one of my pure joys as a stay-at-home dad. On this day, my sick day, Cole came in and found that I wasn't there. I don't get sick often so it was a bit of a surprise for him to hear from Kelly that I was upstairs in bed. He came up to check on me, but I was too ill to talk. When he returned to the first floor, I listened as he and Kelly had the conversation that we have together each day. I loved that Kelly was getting a chance to enjoy one of these moments with Cole. I heard him find a snack, get out his books, and begin his homework just as he does everyday. A little while later Arden and I made the last adjustments to her BG via text message, and I sent Kelly a note telling her that Arden would be home soon, where I thought her BG would be when she arrived, and that I was done for the day managing diabetes.

Arden soon arrived home, all of the noises and movement that I experience each day as a stay-at-home dad began to fill the air. I don't know why, and as I said maybe it was the fever, but I started imagining their lives without me. I guess I felt pretty sick, because I was pondering my mortality on a serious level. 

I've been the type of person throughout my life that thinks scenarios out to their end. What would I do if the house was on fire? How would I react if someone grabbed my child in a store? I have a contingency plan for all kinds of reasonable, yet unlikely moments. Here is a true, yet embarrassing admission, now this is sharing... I know what I'd ask a genie should one pop out of a lamp. I just wouldn't want to waste a wish, ya know?

Anyway, I spent the next few minutes listening closely to my family, and even though I already have a huge heart full of gratitude for what they mean to me; this moment took that feeling to a new, and higher level. I thought about throwing the ball with Cole, and how sad it was to consider never hearing one of his stories again. I wondered how Kelly would handle the afternoons with me not there? Who would help Arden with her diabetes when she was at work? I didn't realize that I would miss making them dinner or breaking up one of the ridiculous disagreements that they seem to have around 5:30 everyday.

My family means everything to me. I am sure they would eventually move on if I was gone, but it wasn't the idea of leaving them that made me sad, I mean it did but I was most struck by how difficult it was to consider not having the conscious notion of them ever again. I couldn't believe how much listening to them go about their day filled me with love and joy. It was obviously the concern in my mind about my health that led my thoughts to something unpleasant, but I am glad that I considered them. Life is so short, and it's easy to take the little stuff for granted. 

My fever has passed, and I'm no longer worried that I have something significantly wrong with my health. I decided to tell you this story in the hopes that you may take a few minutes and listen from another room to your family. Little moments and the pauses in between, that's where life and love live. We could all use a reminder of that now and then, this was mine.