Guest blog: A different approach

Friends, it’s with great pleasure I host today’s guest blogger — @DC Scribe1. You may not know him because he’s not actually a diabetes blogger. DC Scribe is a journalist in Washington D.C. and has been a lurker in the Diabetes Online Community for some time. He has an interesting, yet unfamiliar story. Many times, his thoughts are different from the DOC majority. Through many emails, I’ve gotten to know DC Scribe and learned his story. It’s a fascinating one. He is an extraordinary and talented writer with an excellent grasp of diabetes. While you and I may enjoy the occasional cupcake or Nutella breakfast, DC Scribe chooses not to — partly because he never has. Having been diagnosed as a small child, he’s never tasted or experienced some of the things we so delightfully enjoy. And that’s fine; it’s just different. I asked him to contribute to my two-week guest blogging stretch in hopes of sharing his unfamiliar story. He asked to remain anonymous, and I agreed, understanding we each choose to showcase our diabetes on our own terms.

I understand diabetes. More than that, I’ve essentially neutered it and stuffed the remains in a box so tiny it has an imperceptible impact on my day-to-day life. It’s been that way for decades.

What I don’t always understand are other diabetics.

That’s not a negative statement; just a true one. In 52 years living as a type 1, I have never met another diabetic face-to-face that I’m aware of. I have never been depressed and never burned-out. I have never regretted my “condition” for a single moment in all those years. And I find nothing remarkable about the fact that I have always found living with D easy.

Why would I? I have no complications, have never been incapacitated by a high or low, never gone to the hospital for a D-related reason, never had a seizure or a truly “holy crap” moment. That’s not to say I haven’t had to act fast and decisively. I have. More than once. But on the scale of things that makes life difficult, D does not even make the list.

For years and years and years I thought my attitude and outlook was the norm. I live a blissfully invisible life where D is concerned. Only my mother, my wife, two kids and doctor know I am a diabetic. It was that way in grammar school, high school and college. And after 32 years as a newspaper reporter it’s still that way. No one else knows. No one ever will.

My wife knows I wear a pump but does not know the brand or how it works. Neither she nor my kids has ever heard the term “A1c” or “Novolog” or “silhouette” or “IOB” or “carb counting” nor have they had to intervene when I’m low.

Then … I stumbled on D blogs and twitter feeds and learned that a lot of diabetics feel compelled to publicly share details of their lives with D and it surprised me. Greatly. We’re all different, but this concept is totally foreign to me, though there’s nothing wrong with it if it helps.

But does it? I don’t know.

What I know is this: The foundation of my D management is that it’s mine and mine alone. It’s been that way forever. One example: When I was 11, in the days of one-shot-a-day of NPH, glass syringes and Clintest, my mother would give me four sugar cubes to put in my pocket and send me out for the day. None of my friends had any idea I was “different.” Another: When I was 13, a friend and I paddled a canoe to an abandoned island in the St. Lawrence River and camped for three days. I would get up early and find a secluded spot for my shot. This was in the ‘70s, before cell phones or meters or Twitter.

Since nobody knows I have D it means nobody can come to my aid; not when I’m working at the White House or on the endless, draining days of every presidential campaign since 1988. Not when I’m covering wars or Category 5 hurricanes or driving to the soccer field or commuting to work.

If no one knows, it forces you pay close attention to yourself and learn the obvious and subtle signs of trouble. More importantly, if forces you find a routine that works almost without fail.

I have found those things, and it’s unimaginably liberating. And yes, there are some rules. I don’t believe diabetics can eat anything they want whenever they want. Our bodies are broken, after all. I will go to my grave having never tasted cheesecake or Milky Ways or elephant ears or frappuchinos or skittles or any thing else on a long list. It doesn’t bother me in the least. Food does not define me or, really, interest me. It’s simply a number that must equal the energy needed to keep going.

Another rule: Nothing with carbs goes in my mouth if I’m 150 or above. Ever.

The benefits are clear and measurable: I haven’t had an A1c above 6.3 in the last 10 years (probably longer but I’m going from memory). I haven’t spiked above 250 in more than 10 years (probably much, much longer but I’m going from memory). I feel my lows but do not fear them.

And before you start yelling, consider this: I have slept all-night every night since I was diagnosed in 1959. When I go to sleep, my one and only meter stays downstairs because 50 years has proven to me I won’t need it until morning. The most sugar-laden food in our house are granola bars.

That’s the definition of bliss in my book and it happens because D is prisoner in a very small box. And yes, I know other PWD (many, many others; even most) disagree (often violently) with my approach. That’s fine. The other thing we know about D is there are no straight lines when it comes to individual management. You find what works and what fits for you. Take this as my story, free of judgment.

But consider this: when I do anything, even when I’m asked on two hours notice to get on a plane and fly to New Orleans to cover Katrina or spend weeks in a war zone or working a 25-hour day during presidential campaigns (yes it happens as they fly East to West), whether or not D allows me to do any of it never enters the conversation. Never.

I have no fear when it comes to D. I have no regrets or complaints. Not one, ever. How many PWD can say that?

I have never been happier and I am certain I am healthier than 99 percent of the people I pass on the street everyday.

It is my earnest hope that other Ds can say the same about their own health.

A big thanks to DC Scribe for sharing a little more about his diabetes journey. I know he completely understands the mantra of “your diabetes may vary.” What works for one doesn’t work for the other. While I envy DC Scribe for not letting diabetes have the hold on him it does on me, I wouldn’t trade my management. I enjoy trying new foods and experiencing the deliciousness of things like petit fours. That works for me, and I’m happy with it. (As is my endocrinologist). I realize my body is broken, and I follow some of the same rules as DC Scribe. I also understand that the tighter my control, the more freedom I have to do/eat what I want. That’s my motivation — which is much different than DC Scribe’s motivation. And I am OK with that, too. I have a sneaking suspicion there are many other type 1s out there just like DC Scribe. In fact, I’ve since met another one that lives in my local community. It’s important to understand while you and I may need support for diabetes, not everyone else needs the same but that doesn’t make their perspective or experiences any less valuable. Thank you for reading and for always remembering diabetes brings us together, but it is our differences that make us such a phenomenal force in advocacy.

And a big thanks to @DCScribe1. Throughout our emails and dialogue, I have found a new friend. I am grateful for his insight regarding both diabetes and life. Thank you for being so honest, so real and so fantastic.


6 Responses

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  1. Kim
    Kim September 22, 2011 at 7:07 am | | Reply

    Scribe – can I call you Scribe? I’m glad you’ve found, as you said, “what works and fits for you”. Thanks for sharing.

  2. Debra
    Debra September 22, 2011 at 9:32 am | | Reply

    DC Scribe, I appreciate your view on your condition. I too at many times feel my condition is privately mine. My family does know what to do if I have a D emergency. However they are ususally the only ones I will openly give my shot in front of. If I’m out to dinner, I will usually only do my thing at the table if I’m at a booth or somewhere that I can privately do it. Not that I’m ashamed in anyway, I just feel it is mine and private and not something I want to share with everyone in the restraunt. I don’t necessarily want an audience. On the other hand I enjoy reading blogs and twitter feed when I’m feeling like I’m the only one in the world with this condition, and find that sometimes others are able to speak what I’m thinking better than I. I have been diagnosed only since 2/2/11, and I’m still learning a lot from reading about others experiences.

  3. Tonya
    Tonya September 22, 2011 at 2:16 pm | | Reply

    This is precisely where i hope my daughter will be as an adult (although I hope she has a husband who is involved enough to know when to act in case she doesn’t realize, or is putting her children’s needs before her own needs). Part of the reason I talk so much about it right now (she’s 6!), is to help her understand how to control it so that it doesn’t control her. We discuss foods she’d like to eat and the impact they have on her body. I use a lot of cause and effect for her, and hope that it will help her make quick and effective D related decisions as she grows in independence. Thanks for sharing your story!

  4. Michael Hoskins
    Michael Hoskins September 22, 2011 at 5:30 pm | | Reply

    Ah… Victoria got you as a guest-poster before I could. AARRG. But so glad you shared here, and thank you so much for that Scribe. I’m fascinated to trade emails and share stories and different perspectives. One question I’ve been meaning to pose, but have neglected to elsewhere: Do you ever get hassled at WH or airports or by security or anyone about your pump? Or even just asked about it? And what is your response to those inquiries – acknowledge D or not? Again, thank you so much for sharing!

  5. Sara
    Sara September 24, 2011 at 11:40 am | | Reply

    I knew my thoughts on this topic would be too long for a comment, so I wrote a little about my feelings on my blog.

  6. Jane K
    Jane K April 15, 2012 at 9:43 pm | | Reply

    Thanks for sharing your story. I agree with you and Sara (whose blog I just read, which was a response to your guest blog) in different ways, or on different points. I struggle with blogging about diabetes. Overshare? Undershare? Personal? Professional? I honestly don’t know if I’ll ever be completely comfortable on the DOC. I am working on publishing a book (imminently), and that scares me to death too! Anyway, it’s always enlightening to read about other people’s experiences and you are right – we are all different. We all manage diabetes and cope with diabetes in different ways. I appreciate your approach and your non-judgment toward others, whose approaches differ from yours.

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