Diabetes Blog Week 2015, Day 2: No, I Will Not Take Your Juice Box!!By Jenny McCue -
This past weekend was Mothers day. A common topic in the online community that I love to read is children living with type 1 reaching an age where they look back and realize, with deep gratitude, all their parents and supports did. I love to work with parents of children with type 1 and explain that one day their children will understand and thank them in a fully overwhelming way. I love to thank parents for doing all that this disease demands and fighting for their children to do that one-day.
So in response to today’s blog topic – the “In”, that I don’t talk about….
I was diagnosed with type 1 when I was 5. I lost my mom suddenly when I was in college. I realized then how much of this disease has nothing to do with the clinical part. I was never able to say thank you.
Amidst all the other life – altering things that came from losing my mother, it’s not hard to imagine that my diabetes was way at the bottom on the list of things to care about.
Hundreds of people came to the wake. I remember my surprise and unexpected comfort when I saw a cohort of friends from diabetes camp. I had attended the same Triangle D camp for over a decade with these folks. We bonded over a one-week time where we could just be us. Not us with diabetes, but us. Now here they were. Unsolicited. For me. With me. About me. All in a way that the hundreds of others there could not fathom.
I never really thought of how powerful that was. I have never talked about how much the presence of those people mattered. They were the uncalled support to help me manage the “life” part of this disease at a time when I was simply not capable. They held up the part of being me that people don’t see. They forced me to check my levels and not make a scene. They recommended taking off my pump because it’s okay to be high rather then low for right now. They fought off every person trying to give me a juice box. They said: you are Jenny; you are a diabetic; and we will get through all of this.
Since that time, I have realized that the social demands of diabetes could have broken me. I learned the burden of living with this disease goes WAY beyond keeping 80 – 120. It impacts every bit of living we do: dealing with lows before a job interview; your own wedding; constant watching while you’re pregnant; or every moment while raising children. And how it influences dating, job choices and vacation plans. The behind-the-scenes list is endless.
What I love that the online community is doing every day is re-creating that cohort of amazing people that showed up for me to address all the life issues.
We all know what we should do. We know the basil, the bolus, the carb ratios and the corrections. We know, and we’ve known it unfortunately since we were way too young. It’s the life that causes us to get off track a lot of the times. And that space for guidance is lacking.
I am a diabetic. That is in ingrained in my being. It has driven my life choices. It has created my strongest and best friends. But it remains so sad that it brings these huge burdens even when you have your numbers right. We can manage equipment that is not allowed in ICUs. We can do amazing diabetes math, balance social elements and no one knows we do it. It’s an amazing skill. But it also isolates you. You feel failure, you live in fear of disappointing others and yourself and despite your best effort it impacts those you love. Even using your best words, you cannot describe how it feels.
And that’s when the supports show up.
I work where I do now so I can fight to create a way that makes living with this disease easier. I want my diabetes camp for everyone. We need to focus efforts on addressing the life burden. The online community intrigues me because it is close to making that real. We are on the verge of taking all those feelings and translating them to real advancements.
IN all of this
I never was able to say thanks.
I now say, thank you.
I know all you did, and in my soul I appreciate it.
I will do all I can to make sure everyone can be where I am.
I’m all In for us sharing. To all the parents, friends and partners we have that allow us to live with this disease, we couldn’t do it without you.
I look forward to reading thoughts on what is next. And doing something about it.