This story was originally published on Coffee & Insulin.
Last night, I pinched my stomach and plunged a needle into the layer of fat several inches to the left of my belly button. 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.
My 11th diabetes anniversary is coming up in two 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, but 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.
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.”
Then yesterday, during the Twitter chat, question 7 was:
I feel ___________ when it comes to diabetes management because ____________.
This was my very honest answer, and this was a fellow PWD, Heather’s, very sweet response.
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.
Read The T1D Unstoppable Theory by Samantha Willner.