Bad Diabetic

10 February 2021

Insulin production in my body shut down for good in 1989. No bail out could revive it. In fact, there wasn’t a shot in hell to make my pancreas work again. The only option, if I wanted to continue living, was to outsource the insulin. At age four I was diagnosed with type 1 diabetes.

A life of needles, insulin vials, carbohydrate counting, finger pricks, ice packs and blood sugar monitoring ensued. A lot of tears, frustration and anger also accompanied my new lifestyle. Not all at once, but throughout the three plus decades I have been lucky enough to be a diabetic. 

I wasn’t too keen on the idea of broadcasting my condition. I didn’t want to be treated differently. Or seen as inferior in any regard. That wasn’t for me.

In middle school my friend Ellie had severe asthma. When I think of Ellie now, the first thing I think about is her asthma. It defined her. The asthma was serious. She had a breathing machine she used nightly, so it was a big deal. No denying that. 

Ellie was so much more than a girl with asthma though. But it was so hard to acknowledge who she really was because the asthma dominated the headlines for three years of middle school.

I didn’t want to be known as Heidi, the diabetic, like Ellie was known as the girl with asthma. I wanted to be as detached from my disease as humanly possible. Very few people, outside of close friends and teachers, knew I was diabetic. I preferred it that way.

Ultimately I accepted, even in middle school, that this condition wasn’t a choice. That this shit would be with me forever. I made an unconscious vow to myself that I would be as responsibly detached from diabetes as I could allow. Responsibly detached, meaning I’d do just what I needed to manage it, but I refused to let it take over my life. That was too much. 

I’d learn that it’s all too easy to tilt the balance too far in either direction. If I gave it too much power then I felt suffocated by it. On the other hand if I was too loose with how seriously I dealt with it, I could set myself up for a poorly managed disease, which only leads to further stress and more complications. A real win win in other words.

At college parties I’d seek out the most sober of my friends and have them present when I gave myself my nightly shot. At this point, I was giving myself a minimum of four shots per day. One before each meal to conquer the carbohydrates I was ingesting and one each night, that provided a steady flow of insulin for a 24 hour period. 

I believe in second opinions. So at night if I was out and alcohol was involved I’d have my sober friend double check my handiwork. The right type of insulin, check, and the correct dose, another check. Then they could verify later if I forgot whether or not I’d taken my late night shot. This is a question that comes up whether I’ve had a drink or if I am stone cold sober. Probably something to do with doing the same thing all day long, every day, of every year.

To some this may seem like a lot of unnecessary risk and extra work just to have a little fun. Wouldn’t it be easier to simply refrain from partying? Well, sure. But I was still hot on the idea that I was just a regular college kid. Plus, I feared I’d wake up fifty years from now and regret never partying or experimenting with drugs. I didn’t want that.

I’ve shot up all over the place. In porter potties at festivals, in  moving cars, on planes, inside, outside, alone, with a group, in multiple states, and in several countries. I could do that shit while I’m asleep. The only time I’ve fucked up a dose was when I was sober. I continuously blurred the line between being just responsible enough to get away with abandoning the responsibility that living with a chronic disease requires.

In the back of my mind I knew that the better I managed my disease the less likely I’d have complications down the line. Doctors told me this, especially in high school. And though I never had excessive periods of time with seriously outrageous blood sugar readings, I only accepted being diabetic with a grain of salt. Of course the tighter the numbers, the less complications, but I also understood that I’d have to deal with complications no matter how exemplary I took care of myself because that’s how this disease works. It doesn’t kill you, but the longer you have it, it will wreck havoc on your eyes, kidneys, and so many other areas of the body. 

I asked my younger self, what was a few extra years if I was lucky, without complications if it meant that I didn’t really get to try anything or pretend for a few moments that my body wasn’t a ticking time bomb? I understood that ultimately there was no way of skating through this disease blemish free. That wasn’t even an option on the table. I decided to be as responsible as possible when I turned the other cheek at responsibility. 

A few years ago I walked into an outhouse at the end of a long walk from our campsite to the entrance gates of the Sasquatch Music Festival. It was a warm May day at the Gorge. I closed the door to the outhouse, looked around and began to laugh uncontrollably. I couldn’t for the life of me figure out why I was in there. So I let myself out and joined the group I was with. Of the ten or so of us, I think only two of us hadn’t taken acid. I was not one of the two. 

I felt amazing. Acid is like mushrooms, but on steroids. Everything is brighter, reality is distorted, and literally everything is hilarious. I was almost through the gate check area with my friend, who I called Dolphin. I had just showed the very patient attendants all the contents in my bag, telling them in great detail why I had needles, vials of insulin and ice packs. I’m pretty sure they hadn’t asked, but that didn’t stop me. I was a chatterbox. It’s like someone had put a whole roll of quarters in me all at once.

Just as I was getting my ticket scanned I reached into my bra and found a fifth of whiskey in there. Nobody asked if I was carrying anything, but I happily offered this information up. I pulled it out, completely perplexed as to how it got in there and how long it had been in there. Somehow it didn’t occur to me that I had put it in there to sneak through for my friend Dolphin. The attendant gave me a disapproving look and took the bottle from me and sent me into the festival. Dolphin, also on acid, saw the whole thing and couldn’t believe I had offered up the whiskey just like that. It wasn’t intentional I assured him. 

We found our group on the grassy hill. The band Flight of the Concords was onstage. The mood was light and the giggles were coming in droves. After Flight of the Concords left the stage, Mars Volta appeared. The mood changed drastically. I don’t recommend seeing Mars Volta on acid. They come across really angry and scary. I thought I was in trouble. I shivered in my flip flops, another big no no for diabetics. Why flip flops, you might ask? Something to do with feet and circulation problems. Although, at the time wearing the flip flops seemed like less of an offense than the acid. 

Lucky for me, Dolphin was there to distract me from the scary sounds coming from the stage. Dolphin was a funny dude anyway, but my god the kid was relentless. I couldn’t tell you how much time actually passed. I laughed so hard and then uncontrollably hard.  Soon I found myself overheated, out of breath and in severe pain. 

It felt like boulders were parked on my chest. I was confused and felt like I might be dying. Dolphin told me I just got back from being transported from the festival to the hospital because I had a heart attack. 

Holy shit. That certainly explained the heaviness I felt in my chest and the shortness of breath. He told me I had a heart attack from laughing so much, but that I had survived and now I was back to enjoy the music. Whoa. I couldn’t believe it. That was way too cool. Not only did I give myself a heart attack and survive, but then I was back at the show like nothing had even happened. That’s acid for you. The impossible is suddenly possible.

Plus Mars Volta had finished by the time I returned from my heart attack escapade, so I didn’t need to be so scared any longer. Wow, I thought. I pulled out my glucose meter and checked my sugar level, believing it had to have risen with the heart attack. To my delight, it pointed only slightly elevated. Better to be a little above, than dip low, because the way my body felt, it was like I was riding one big low wave. 

Eventually, we all felt strong enough to move locations. We found ourselves on the floor, surrounded by people dancing, laughing and celebrating with their own group of friends. My mind was blown for the millionth time that day as Wayne Cohen from the Flaming Lips rolled off the stage in a giant bubble. Was it real or was my mind playing a trick on me? He was all over the crowd, and everyone was going insane. He floated by, still singing, while the rest of the band stayed back onstage. It was incredible. 

Call me crazy but I believe that whatever a person does to their own body is entirely up to them alone. I’m the one that has to inhabit this one body for as long as I’m here. Therefore how I take care of it falls on my shoulders and my shoulders alone. People I’ve known and complete strangers have all weighed in on how I manage my disease. Sometimes the concerns are simply that, concerns. But at other times it’s pure judgement.

To my parent’s credit, they didn’t participate in any judgment or criticism. Maybe they understood that telling another person how to live with their disease, even their daughter, really wasn’t up to them. Some things, most things, you have to figure out on your own. I’m grateful for that. 

I can appreciate some of this concern that has been brought to my attention over the years. But what I wish is for some of these critical judgers to be forced to be diabetic for a week. Hell, even just for a day. Then I want them to tell me honestly if at the end of the day they don’t want to have a cocktail and pretend for the smallest moment that they don’t have to feel the weight of what being diabetic feels like. Even if that feeling is only fleeting. There are no days off, and no vacations from a chronic disease.

I’d love to tell you that now that I am older and wiser, I am the perfect little diabetic. But I can’t tell you that. No diabetic can. Maybe we haven’t all tried drugs, but is anyone really perfect? I think not. I will never be the poster girl for diabetes and that’s fine by me. That sounds pretty boring anyway.

After 31 years of frustrations, disappointments, and bad news I’ve learned to balance a little steadier between managing this disease responsibly and having as much fun as possible. It’s hard not to learn really quickly that even if you do everything right, eat healthy, exercise, and shoot up consistently, your numbers can still be off. 

I can’t begin to describe how frustrating it is to do everything you should be doing, and not doing the things you shouldn’t be, like wearing flip flops or drinking heavily, and yet still you can’t for the life of you figure out why your numbers don’t align with all the good and proper things you’re doing. It’s so fucking irritating. But, I guess that’s life. You do your best and hope it all doesn’t go to shit. 

Recently, my eye doctor found traces of diabetic retinopathy. She sent me to a retina specialist, where I was blinded, injected with dye and had a photo shoot for each retina. It was a really great experience. Was this diagnosis all my fault? Probably. Although my numbers have never been stronger and I’ve never had a tighter reign on this disease, I still had liquid leaking out of the littlest blood vessels in my eyes. I was told that because there was leaking blood vessels in my eyes, the blood vessels in other organs were also leaking. Gross. Now I was a leaky diabetic mess. 

The specialist probably should have called in sick the day I went to see him. I asked a lot of questions. I always do, especially for how much these appointments cost. I asked if tight control is the only way to avoid retinopathy? It helps he said, but it also matters how long a patient has been diabetic. I was thirty plus years in, so my kidneys or eyes could be faltering by now, even if I had been the most disciplined diabetic alive. It’s a toss up when complications and which complications take place he told me. 

I may not have been seeking validation for some of my choices over the years, but it was nice to hear from a professional that a lot of this disease was out of my control. It’s sobering when you realize you don’t have much control over your own body. No matter what you do for it, or how you tend to it, it’s out of your hands. It could be fine one minute, and betray you the next.

Now that the retinopathy has made inroads in my eyes, I’ve paused to contemplate if I’d do everything the same over again. I would. Sometimes I got too good at pretending I wasn’t diabetic, but that was worth the price of living in the moment for me. Diabetes is a disease I deal with every hour of the day, but I’ve managed not to let it rule my life. So far I’ve refused to let it define me. You have to play with the hand you’re dealt in the best way you know how without losing your sanity. At least, that’s what I’ve tried to do.