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."

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.


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


Share your story about insulin access

Banting's Ghost has gotten enough funding to begin the documentary process thanks to 36 amazing Patreon supporters (and we still have room for more)! Without stories to document however, there is no documentary. That's where I need your help. Do you have a story-or have you heard someone tell their story and feel like it needs to be heard? Insulin access stories seem to be everywhere until you pull out a camera and notepad; then everyone sort of puts their hands in their pockets and start kicking rocks. There is a bit of a time constraint for capturing the first round of stories as I am enrolling in a nursing program this fall and will have additional responsibilities which will limit my ability to travel freely this fall.

If you're wondering what kind of stories I'm looking for, let me clarify: stories of people impacted or involved in issues which relate to insulin access. This could mean anyone from the CEO of Lilly and JDRF who are on one end of the access pipeline to someone on the complete opposite end, living in rural Utah and unable to qualify for medicaid AND unable to afford insurance premiums. Maybe you've lived off of samples from your doctor--or maybe you're the doctor. Maybe you're the pharmaceutical rep who delivers the samples to the doctor and you see all this very differently than those of us who are outside the industry.

This is a complex story with many perspectives. All of them are important to understand. I realize that people sharing their stories are putting themselves at risk and I am willing to be discreet and conceal identities if need be in order for my subjects to feel comfortable about opening up. I am committed to an honest representation of what my subjects share; I am not creating a hit piece against the industry nor a puff piece for it. I want to capture the struggle of people all along the chain of this issue.

Providing a platform and inviting you--that's all I can do. Now it's your turn:

  • Visit our contact page linked HERE or email me directly: steve@livingvertical.org
  • Share your name and relative location (I won't share this information publicly)
  • Give a brief summary of your story (doesn't have to be in depth, just bullet points about the main conflict you're experiencing
  • Let me know how you prefer to be contacted if we can work together.
  • Please note: I'm not looking to promote other blogs or personalities within the diabetes community through Banting's Ghost. This project isn't about sharing your workout and diet program or promoting your speaking tour or book.
  • If you have a blog or a book or whatever but you also have a story that relates to insulin access--then by all means reach out and get in touch. I'm not trying to exclude anyone--just trying to focus on stories about insulin access.
  • THEN SHARE THIS POST!

I'm excited to see how far this can go and what we can create together. It won't be easy and it may not even be successful. Documentaries are lots of work and sometimes they fizzle out. Still, the only way to know is to try hard.

Stephen Richert is a photographer and filmmaker who happens to live with type 1 diabetes. You can see his professional portfolio here.

To support this project and all the creative efforts of LivingVertical become a Patron and get prints, ebooks and early access to media as part of the group of insiders driving the creative efforts of LivingVertical also please know that non-monetary support is always greatly appreciated. If you can share our work or connect us with your friends, it would be greatly appreciated!