Open Portal

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On Thursday, the day before my wisdom teeth surgery, I typed out a list of diabetes-related information that I thought my roommate, Owens, should know. He was the one driving me to and from my surgery, thus was entrusted with managing my entire life as a whole, in case anesthesia and/or painkillers made me unable to do so. This list began innocently enough, with things like “This is the range my blood sugar should be in” and “Here is what to do if it’s below 80,” but it quickly grew to be an entire page long, and even then, there were so many things I’d left out. Like circumstances of activity and pain and the last time I’d eaten and the next time I’d eat and the protein/fat/carbs in that food and how much of it I’d even be able to swallow because of the state of my mouth. There is so much that goes into this

I’d never before tried to explain in any real depth how my management of diabetes worked, and to see it on paper was stunning. I sat there for a minute looking at all the information that had just flown out of my head and onto the page, and thought, Thank god I know myself. Thank god I have myself. The idea of temporarily not having myself to take care of me was freaking me out, despite how attentive and well equipped the doctors were, despite how intelligent and caring my friend was.

All I could think was: But they are not me.

Finally, while writing up this list, I thought, I cannot give Owens more than one page of instructions on How To Keep Me Alive; it’s going to scare the shit out of him. So I stopped at the end of the page and wrote, “If you have any questions, please call my friend, Amy. Here’s her number. She also has Type 1 diabetes.”

(After I printed it out, I was feeling smug about how “prepared” I was. How Responsible Adult of me. 5 minutes later, I pulled the paper out of my purse and saw that I’d spilled water all over it. Whatever, it dried. It’s fine…)

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When I gave the piece of paper to Owens, he studied it for 15 minutes and asked me questions. It was strange for me, and probably for him, because we’ve been best friends for 8 years now. We’ve backpacked through Europe together, and gone on camping trips and road trips to Tennessee and Boston and Alabama. We’ve lived together for a few months now, but even before then, for nearly a decade we’d grown up together and hung out so often we basically lived together. He knows me better than most people, and yet, here we were– me, after all this time, only now explaining all of this to him.

Me: I have to have a juice box, then wait 15 minutes.

Him: What happens after 15 minutes?

Me: If it isn’t raised enough, I need more sugar. Also a snack so it stabilizes.

 —

Me: I take 2 different types of insulin every day.

Him: Wait, why?

Me: One is only in the morning, as a kind of baseline. Extended release. 22 units.

Him: How do you measure the units? 

 —

Me: 2 beeps means high and 3 beeps means low.

Him: I feel like 3 beeps should mean high.

Me: ……..Why?

Him: Because its, like, an extra beep, ya know. Like, it’s higher.

Me: Wha–no, don’t confuse yourself. 3 beeps means low. That’s just how it is. 

 

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I have no satisfactory explanation as to why I’ve never broken all of this down to someone before. No explanation other than… I didn’t feel the need to. Emotionally, that is.

I’ve carried myself by writing, and by having a handful of Type 1 friends to go to with questions, concerns, camaraderie. This blog has opened a portal of connectivity I never saw coming, and now I can’t imagine not having it. I feel rich in community, and I’m grateful for that.

I’ve also not explained myself before because I didn’t want to have to justify things, or I didn’t want people to worry, or any number of other reasons. But, for a long time, there had been a physical need. A just-in-case need. Honestly, for months, I’d been meaning to show Owens how to use glucagon– just in case he ever found me unconscious, or things were going rapidly downhill. But I never did. I don’t know why, exactly. I’m not the most precautionary person, I’ll tell you that. Maybe a naive part of me just hoped it would never come to that– the same way, until this year, I never carried an umbrella with me. I just hoped it wouldn’t rain. Forecast be damned.

But so, I introduced Owens to the world of my illness.

I explained to him how things work here and why they work this way and how fragile and resilient we can simultaneously be.

In the end, he didn’t even have to refer to my paper. I was loopy, but still able to take care of myself. It blows my mind sometimes, how capable we  are of managing the complexity of this disease in the wildest of circumstances. We just know.

///

Last night, at 1:30am, Owens opened my door. “Sarah,” he whispered. “Your blood sugar monitor is beeping.”

“Oh, shit, thanks,” I whispered back, reaching for my Dexcom on the bedside table. I’m a very light sleeper, but even still, somewhere along the line my brain got used to these beeps and they take a long time to wake me now.

“It’s 3 beeps,” he added. “So, it’s low.”

 

Part of his concern made my heart swell, and part of it made my heart shatter.

The portal is open now; he’s more aware of what is continuously going on with me.

Though he’d heard my Dexcom beep a thousand nights before, he now got out of bed to make sure I was okay.

Knowing that he knows how it works is a comforting thing. It is, too, a weighted thing.

 

 

10 Comments

  1. Nancy LaRose November 8, 2016 / 12:51 am

    Thank you for expressing this so beautifully. I, on the other side of the table, don’t have any Type 1 friends. At my age I haven’t met any Type 1’s in my community. It’s unusual that I developed this disease at age 54. Now 66, I’ve gotten things under what might be called “control”, don’t you hate that word? because I have a CGM. Love you Dex. My lovely endo loves the results since I’ve gotten dex. Using it has changed my life. I also follow diet suggestions of a physician, Dr. Robert Bernstein. Therefore, I have very minimal spikes, but most people wouldn’t be willing to stick to this diet, and it has changed my whole experience since I’m more able to maintain an even blood sugar with minimal spikes.
    No starch, period. He explains that even if you’re giving yourself insulin to cover the carb such as rice, potato,etc ,if it’s starch based carb, you will spike. The body can only absorb so much insulin to balance this type of carb….anyway, not to get on that..you might want to check him out. .I just really appreciate your expression of what we all go through just to get through our life experiences and staying on top of the possibilities of melt down,trying to include people in our realm of keeping it together and staying alive. Nancy.

  2. Jenny November 8, 2016 / 1:35 am

    <3 <3 very touching story. Thanks for sharing this. I hope my daughter will be lucky enough to have a friend like Owen someday.

    • Sarah V. Sarah V. November 21, 2016 / 3:52 pm

      Thank you, Jenny. I’m sure she will. She’s already lucky to have you. <3

  3. Rick Phillips November 8, 2016 / 1:48 am

    The day I tried to explain this to my wife 40 years ago, she looked at me and said, yeah ok. Of course 40 years ago it was all pretty much do whatever but take your insulin, yes still two kinds.

    This item has been referred to the TUDiabetes Blog page for the week of November 7, 2016

  4. SilviMichelle November 8, 2016 / 7:31 am

    ? This so much! Thanks for sharing 🙂

    • Sarah V. Sarah V. November 21, 2016 / 3:53 pm

      Thank YOU <3

  5. Federica November 8, 2016 / 7:50 pm

    Dear Sarah,
    I have no idea about how to make you realize how grateful I am to you for writing this blog.
    So thank you.

    But, just so you know, I am writing you an email in an attempt to shower you in the pre-mentioned gratitude.

    • Sarah V. Sarah V. November 21, 2016 / 3:53 pm

      Oh, thank you, Federica. I got your beautiful email and am going to respond as soon as I can. <3

  6. Judy November 9, 2016 / 9:35 pm

    Thank you for sharing your insights, thoughts, feelings and stories. It helps me understand what my son has faced for the last 17 years! I am a big fan of yours and always look forward to reading your posts. Many, many thanks!!!

    • Sarah V. Sarah V. November 21, 2016 / 3:54 pm

      Thank you very much, Judy!

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