For The Tribe Itself

Last night, I pinched my stomach and plunged a needle into the layer of fat several inches to the left of my bellybutton. I do this 6 or 7 or 8 times every day– so often I don’t even think about it. Often I don’t even feel it. But sometimes I do and sometimes I really do. Last night, as soon as the needle slid beneath my skin, I hunched over in a sharp, white flash of agonizing pain. Oh my god, I said out loud, to an empty room, to myself, to my body. I couldn’t even bear to inject the insulin. The needle hurt too much. I pulled it out, trembling, clutching my side. A single drop of blood bubbled up, and began to drip down my body. One tiny trail of blood, like one tear rolling down your cheek. I wiped it away.

I still hadn’t taken the insulin, so I, slower this time, stuck the needle into my right side, still reeling from the shock of the left. This time it didn’t hurt any more than usual. I straightened my shirt, and got on with my evening.

The pain on the left has gone away, but a bruise remains. It sits about an inch away from another bruise just like it.

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My 11th diabetes anniversary is coming up in 2 days, so my relationship with the disease has been on my mind more than usual. I’ve been feeling, for a week or two now, extra sensitive, extra frustrated, extra scared and extra grateful all at once. I’ve been feeling all of this without saying any of it out loud, writing it down a little. Mostly just carrying it.

Then, last night, one of my Facebook friends, Stephen (Hi, Stephen!) posted a reminder about a DSMA (Diabetes Social Media Advocacy) Twitter chat that happens weekly on Wednesday nights (9pm EST, #dsma, if you’re interested!) I usually fail to remember that this is happening, but as soon as I saw his post, I put an alarm in my phone for 8:50 to remind myself. I’ve floated in and out of this chat for years, going through periods when I participated weekly, then months and months when I didn’t. Life happens. I hadn’t participated in months, but as soon as I logged on last night and saw familiar names and faces, some who I’ve met in person and many I haven’t, I felt at home. I exhaled, thinking,  These people! They get it! Thank god.

Here, in the infinite skyline of the internet, I convened with my tribe.

My tribe in particular knows what it is like to watch blood roll down their stomach. They know the risk of chocolate cake and the power of a juice box. My tribe has a language of its own, with words like Bolus and Dexcom and Ketoacidosis. My tribe knows when it is necessary to crack jokes about dark and stigmatized subjects, because sometimes this is how we survive.

When your body attacks the cells on one of its own organs and you are taken to the hospital and essentially told that you now have to function as that organ yourself unless you want to die, and here are some needles and hope you have good health insurance because this thing called Insulin that is gonna keep you alive is expensive as shit and here are some rules for managing your blood sugar but you could also just set this list of rules on fire because, well, you’ll see… the situation is really just preposterous. Diabetes as a disease is absolutely ridiculous and absurd and sometimes I can’t believe that I do it every day. I wake up every day and try to be an essential organ. ?!?!?!? And so, I need this tribe to help me make sense of things. To wade with me in both the darkness and the light.

The deepest, truest connections are born through our personal struggles. Our singular experiences of loss, suffering, and sorrow turn out to be not-so-singular after all, and somehow we find each other. We are never, ever alone. I know how often this doesn’t feel true, which is why it is so important to say over and over and over again. 

I saw a Tweet yesterday that I found quite poignant (what a funny sentence to write). Someone was telling someone else about their recent Type 1 diabetes diagnosis, and the other person responded,

“I’m sorry you’ve joined us. But the #doc (Diabetes Online Community) is immensely helpful.”

I’m sorry you’ve joined us.

Oof. Heartcrunch.

But we are here.

A fellow PWD named Rick commented on my last blog post (about turning 25/ being diabetic for 11) and wrote:

“We are delighted you are here with us. Our world is richer with you as part of our tribe. I realize this is not a tribe that anyone wants to join. But it is a tribe that is glad you are here.”

Heartcrunch.

Then yesterday, during the Twitter chat, question 7 was:

I feel ___________ when it comes to diabetes management because ____________.

Gulp.

This was my very honest answer, and this was a fellow PWD, Heather’s, very sweet response.

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Heart.

Crunch.

 

None of us asked for whatever it is that we are carrying and cannot set down.

That could be a chronic illness or an unending grief or an addiction or a trauma or any number of things. What we asked for, perhaps, was understanding, or comfort, or hope in the face of adversity. We asked to not feel alone in this. We reached out a hand, and kind and knowing hands reached back. This came to mean absolutely everything.

Even as the circumstances that brought me (and all of us) to this place are less than ideal… for the tribe itself, I’m glad that I am here.

 

 

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16 Comments

  1. Kathy August 19, 2016 / 3:18 pm

    Our tribe is infinitely richer and better for your being here. You are loved like a sister, though we may all be just moments of light in the ether. Hang in there friend.

    • Sarah V. Sarah V. August 19, 2016 / 5:32 pm

      Thank you so much, Kathy. Love to you.

  2. Kim August 19, 2016 / 4:40 pm

    This was painfully lovely. Thank you.

  3. Katy August 19, 2016 / 5:57 pm

    Perfection. I’m glad to have read this.

    • Sarah V. Sarah V. August 20, 2016 / 1:52 pm

      Thank you, Katy. xo

  4. Joannah August 19, 2016 / 9:25 pm

    you are such a glorious strong spirit and brave heart. thank you for crunching my heart today. feeling you! sending looooove.

    • Sarah V. Sarah V. August 20, 2016 / 1:53 pm

      Joannah!!!! <3 Thank you. So much love for you!

  5. Scott E August 19, 2016 / 11:26 pm

    There comes a point when you shift from fretting “How am I going to do this every day for the rest of my life?” to proudly declaring “Take a look at the extraordinary things I’ve done every day for nearly my whole life!”

    I don’t know if that’s what you call a diabetes “midlife crisis”, but when it happens, it feels pretty awesome.

  6. Rachel Smith August 21, 2016 / 10:33 am

    I have been T1D since I was 2 years old. So long since (45 years), my mom can’t remember the exact date of diagnosis but then she did have an 8-12 week old baby to care for as well. I have never known a time when I didn’t have to inject to keep myself alive and I think that is a blessing. I can’t imagine having to go through a complete change of lifestyle in my teens or later. So, all that said, I’m happy to be a part of the tribe and I love reading your posts Sarah. Much love 🙂

    • Sarah V. Sarah V. August 21, 2016 / 6:04 pm

      Thank you, Rachel. Wow, you were so young! It’s kind of crazy for me to think that for 14 years of my life, I did not have diabetes. I’ve actually still spent more of my life WITHOUT diabetes than with it. Thanks for the kind words, and for reading my blog. xoxox

  7. Jeremy Larsen August 22, 2016 / 12:51 am

    I think ones attitude is very important in how big a deal diabetes is. I used to think how crazy it was that I had to keep myself alive every few hours. But then one day I realized that EVERYone has to do that – humans have to eat every few hours or they eventually die. It’s insane! If you choose to see it that way. But why disappear down that rabbit hole? Just patch yourself up when you need it and get on with it, I say.

    Diabetes is just an extra thing that most people don’t have to deal with, but it’s far from the worst thing that could happen. Modern technology makes it pretty simple. (And I’m old school, using 1990s-era technology mostly :p )

    And I know what you mean about the super-painful needle plunge! Happens rarely, but every now and then I’ll watch my hand jerk the needle back out immediately without injecting anything. Part of the territory I guess…

    Anyway good to have you in the #DSMA chat! It was my first in a few months as well, even if I missed half of it (time zone confusion).

  8. Rick Phillips August 22, 2016 / 1:04 am

    We are rich because you joined us, no one wants to join this club, but our club is the best when we care for each other. I am the member of two clubs no one wants to join. Both are rich because of those who are in the club.

  9. Bronwyn Liebke August 23, 2016 / 8:59 am

    Unusually, I am quite speechless. Thank you. Much love.

  10. adiabeticabroad August 24, 2016 / 7:01 pm

    “The deepest, truest connections are born through our personal struggles.”– how true that is. Lovely post. I’m glad you’re here.

  11. Caroline August 24, 2016 / 9:31 pm

    I found this post through Kim’s tweet, and I really needed to hear this! I’ve been having a terrible diabetes week and feeling dumpy about it emotionally. Thanks so much for writing this, and I hope you had a solid diaversary!

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