A Sad but Truthful T1 Blog


#1

A few years ago the following blog was written by Jess Drexler, a 22 year old type 1 diabetic, diagnosed at age 6. It is a masterpiece, such beautiful writing, I wish I could write like that. Her Mom gave me permission to share it.

"Cold hard truth. In the palm of one hand I am holding
one bottle. It is a bottle of Novolog fast-acting insulin. In the other, I am holding one 50u syringe, drawn back to the fourth marker with no breach, because I have become an expert in transporting air bubbles back into the air. But, for a diabetic, it is not just about the medicine. It is the intricacy and the intimacy we develop with the illness, finding ourselves reasoning with her, or begging for her to stop. It’s in the fridge, cupboards, and cabinets, and it is the clear liquid that my life teeters on. Diabetes poses a very humbling reminder every time we get up in the morning. The one thing that can kill us is also the one thing that keeps us from dying, and I’m holding it in my hand.
I still remember the last night I spent alone, before this world of vials and syringes… It was dark outside, so the lights inside created a little reflection on the window of my small, 28 pound, 6 year old body. The street lights were illuminating a visible shape from the shadows to the pavement. I saw the bugs dancing around the streetlights in their own crazed rhythm. They’d enter the shadows and go unseen, but then the light would sweep them up again, flying in intricate circles and bumping into each other, fighting for the light. I always wondered why those bugs wanted the light so badly, but only came out at night.
I didn’t know that would truly be my last moment I remember, being alone.
Now, we are always together, I am always with her; we share the same body, the same home. 17 years. That’s 204 months, 886 weeks; that’s 150,000 consecutive hours we’ve spent, body-to-body, sharing the air around us.
When people ask me how I can do it, I lie.
I don’t say that I still hate every shot as much as I hated the first one when I was 5 in a white room in the pediatric unit. They would grab my arms by my wrists, and pin them above my head on the white pillows, and next my ankles, until I couldn’t wiggle my way free. Then the nurse would enter, with that seemingly sinister smile, holding the syringe, she’d creep up to me. I knew I couldn’t escape the fear, all I could do was try to understand it. After a couple days, I understood. I understood that arguing, fighting, and running away wasn’t going to set me free, I understood that kicking and screaming wasn’t going to change anything. But,when people say “I could never do that,” or “that looks like it hurts,” I tell them “well, you do what you have to do.” But this isn’t the truth, none of it is. It does hurt, the needles and the pokes and sticks don’t get more pleasant as the days go by.
But you begin to understand, you begin to see what it is truly like, to not have a choice.
So, when people ask me about my diabetes, without having a clue about it, I lie. Because maybe, the truth isn’t what they want to hear.
Maybe it is because I can’t say it’s inconvenient having to make sure I have my phone and keys, wallet, monitor, test strips, short-acting insulin, long-acting insulin, syringes, lancets, and glucose tablets every time I leave to go somewhere.
I can’t say I almost died last weekend because I ran out of glucose tabs at my apartment.
I can’t say how ■■■■■■ it is that I have to make the walk into bleach-greased bathroom stall and put one leg up onto the toilet to give an injection because I’m embarrassed to do it where people can see, where people can stare.
I don’t tell what it is like to have a needle fall out of your pocket in a gas station, and hit the floor like steel on a mirror. I don’t tell them about getting pulled over, searched, and detained, for a needle, my lifeline, sitting on the passenger seat.
When people ask me how diabetes impacts me, I lie.
20,000 injections, 31,000 finger pokes, millions in medical bills, and a slew of misconceptions, and she shows no sign of stopping. She doesn’t stop reminding me that she has control, that she watches my every move, my every moment, she is there, waiting for a mistake so she can slip inside. She reminds me that I have to understand her better. She tells me I have to test more, I have to change my basal rates, or change my ratios, I have to study her and study myself, and never forget that I’m not alone. She keeps me up at night, aching for a drop of blood, or a half-filled syringe. Everyday, every hour, every second, since that night the bugs were dancing in the street lights, she is with me.
I have diabetes.
This is the truth.
Jess Drexler


#2

I actually find this very sad. I hope that eventually Jess has learned to live a bit easier with diabetes.

I was diagnosed at eight years of age.


#3

Very beautifully written. Yes, and truthful something we must all accept.


#4

I also find this sad. It does connect powerfully on a gut level.

I have a more moderate view of diabetes but I was diagnosed as an adult, not as an innocent six-year old.


#5

I can very much relate to this writing. I wrote many a journal entry or blog post that were very similar during my 20s. Especially during the years when I was coming to grips with what the diagnosis meant for my life (even though it had been 15 years earlier) and that I would be living with this condition forever. In many ways, I think the adjustment for those of us diagnosed as children, who may not fully understand the ramifications or our emotions at the time, is sort of delayed until young adulthood.

I’m less emotional about diabetes these days, but I do still get emotional about it sometimes. Diabetes is hard, it is relentless, it is unending, and it is something others will never truly understand. Most of the time none of that bothers me anymore, but there are times I feel vulnerable and it does.


#6

Thank you for sharing. It’s hard to write about but its somewhat comforting to know there are others out there dealing with the same challenges even though we’ll never meet.


#7

But that was a very long time ago (same for me).
We adapted to changes and newer technology over time, rather than being overwhelmed in a short time with many changes.

I think it’s much more challenging in todays environment.


#8

I also think people continue to change over time.

This post was written by a young adult. Over the past ten years as I’ve moved from being a young adult to a, well, regular adult (I’m not really middle-aged yet), my emotions about diabetes have mellowed somewhat, and especially have become less negative and more accepting.

As I live with diabetes into future decades, I imagine my emotions about it will continue to change quite a bit. Maybe I’ll eventually come to a place where I just see it as a routine part of life, like many of the 50+ year people here do.


#9

Well I certainly do remember the huge needles we had to use in 1959, and running from my mom and dad when it was time to have the shot which certainly hurt a lot back then. I had trouble sleeping because I dreaded the next morning when it was shot time. It certainly wasn’t an easy time for me. For a time I felt like the rug and been pulled out from me.

We are all very different and obviously Jess feels very strongly about having to live with this life changing illness. As I said, I hope that Jess will eventually be able to accept it as part of his or her life. I am very sorry that Jess is hurting. Living with diabetes is terribly hard at times.


#10

I can relate as I was diagnosed at age 3, that was 43 years ago.


#11

The blog is so true. I was D’d at 22 mths of age. I am 50. I am female, had a heart attack, stroke, open-heart surgery. It would be so nice to have a functioning pancreas. I am ok. It could be much worse. Then again; it could be better.


#12

@joakim, I’m sorry to hear you have been through all that with your heart. I have a T1 friend in Maryland who needed a quadruple bypass, but she was too unhealthy for that. She had a double bypass, and she is doing really well now. She enjoys life very much. I hope you can too.


#13

I have had diabetes since I was six as well. I am now 55 and quite healthy. I feel sad for her. I was taught that it was just a way of life. I was just like all the other children in most other ways besides the shots and checking sugars. I thought I was lucky there were so many other children out there that had it way worse, no legs, blind, etc. Wow, I wish I could hug my dad right now for teaching me a wonderful way to live my life.


#14

This really got to me on a gut level. I was dx’d T1 at age 62 and the downsides in the past 4 years are not so different from this young person. So many days of things just going along, doing what needs to be done to manage, and then those times when I am just plain exhausted with the whole mess. Although I’ve always known, aging would bring it’s own challenges, never imagined the impact of an autoimmune disease striking. Don’t feel sorry for myself, but once in a while it’s nice to know that others truly do understand. Thanks for sharing this essay. It was wonderfully written.


#15

Hi Lorraine, I agree with everything you said. I’m glad you liked the essay.


#16

Hi Richard. I printed the blog from Jess and took it to the endos in Ottawa, Canada. It is so well written and true. I just got put on auto-mode on my 670G pump and diabetes is SO MUCH better now. Thank you so much for posting the blog; doctors really need to know what it has been like.(:blush: