You can't really say it gets better, because it doesn't

I feel like you can't really say it gets better, because it doesn't. I always thought I'd never reach that mental block where you're just like, 'I'm sick of this and I don't want to check my blood sugar and I don't want to inject myself'. I was the most diligent diabetic for the first three years. Recently I hit that block. I literally just had a mental breakdown because my stomach was hurting and I was hungry and I just wanted to eat. I had to check my blood sugar and take insulin because my sugar was high. Then I had to wait for the insulin to work.

I just wanted to f*cking eat.

I started tearing up right there at school. I didn't want to do it anymore.

But I have to.


It's not even something that's visible.

It's not even something that's visible.

"It's not even something that's visible. Cancer's not technically visible but you can lose your hair, lose a lot of weight. But you look at me you wouldn't think, Oh that guy's sick. He's climbing mountains, swimming in the ocean. He doesn't have a handicap, you know? It's sad. Diabetes has just been turned into a joke. It's not about the people who are actually suffering with it. It's a joke."


I don't know if I should say this but Cancer patients...

I don't know if I should say this but Cancer patients

"I don't know if I should say this but Cancer patients, essentially you go on chemo or whatever and there's gonna be one of two outcomes. You go into remission or you die. There's a possibility that you can get cancer again if you go into remission but it goes away for a while. Diabetes doesn't go away for a while. No matter what you're always going to need insulin. Right now I'm working 36 hours a week managing a climbing gym. They do not provide insurance."


I should have access to the insulin I need to survive.

I should have access to insulin I need to survive so I don't have to get to that point--so I don't potentially end up in the hospital.

"I should have access to the insulin I need to survive so I don't have to get to that point--so I don't potentially end up in the hospital. So my family doesn't walk into my room the next day to find a dead body. It legitimately scares me. It doesn't just scare me it scares my significant other. And my parents too."


I'm not able to buy insulin out of pocket. Not even in Mexico.

insulin out of pocket

"It's pretty dramatic. My brother has casually gone through school. He's five years older than I am so he's taking his sweet time. He's 28 and he's already been off my parents insurance for three years. I still have a few more years on there but I'm like, 'what am I going to do when I don't have that insurance any more?' I'm not able to buy insulin out of pocket. Not even in Mexico, which is just an hour south of here. "


I wanted to get into music theory

"If I don't make it then I don't have insurance. If I don't have insurance I don't have insulin."I wanted to get into music theory...getting good enough to the point where I could be a studio musician. I thought about that because it pays pretty well but it's competitive and if I don't make it then I don't have insurance. If I don't have insurance I don't have insulin. If I don't have insulin, then...I'm dead, so yeah."


I've had this box since I was diagnosed in 2012. March.

"I've had this box since I was diagnosed in 2012. March. Lots of syringes and pen caps, we just dumped them all in there. I think we did the math once. This represents thousands and thousands of dollars."


If diabetes was cured tomorrow

 

"If diabetes was cured tomorrow and a company patented the cure, like, it wouldn't make a difference because it still wouldn't be accessible. It's not just a business, it's literally peoples lives that you're putting price points on. You're effectively saying 'this person owes us this much money to be able to live' and not even a normal life--just to live."

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I can climb my own mountains. Making insulin is the one thing I CAN'T do.

"I can ride my own bicycle. I don't need sponsored teams to do that for me. I can drive my own car-really fast if the urge takes me. I can survive in a world without sponsored race car drivers and cyclists telling me that I can do anything I put my mind to. You see, that's only partially true, right? Hell, I know what I can do. I can do all the cycling and driving and running. The one thing I CAN'T do is make my own insulin. I'll climb my own mountains, thank you very much, but I can't do that without insulin. I've inspired my pancreas really thoroughly and nope, still no insulin. 

The pharmaceutical industry, these are the guys who can make the insulin I need to survive but they're busy paying people to do inspiring things that I could do for myself-if I weren't busy worrying about how I'm going to afford insulin. You see the irony?"

Ok, I know this isn't about my story. This is a documentary project I'm shooting about a much bigger story of which I am a very small part. But I am part of this story, so yes, I will be popping in to share my own perspective on occasion. That's selfishly what prompted me to turn my camera away from the mountains I love--for a time, at least. I've got plenty of my own inspiration and I think you can figure out yours too. Find a mentor, search a couple of diabetes related hashtags on social media, you get the idea.

Let's not forget the responsibility we have to demand accountability from the industry that makes insulin. Let's not forget the responsibility we have to call out the community and research organizations who value their relationships with industry more than the community of people they are meant to serve.

Ok, I'll get off my soapbox now.

If you want to share your story and perspective on insulin access, contact me. To support this project and get awesome perks, become a LivingVertical Patron