Steven Richert is a type 1 diabetic who truly lives life in a state of suspension – scaling rock walls, mountains and cliffs aided by his climbing gear, his will and his wife Stefanie. Starting today, Monday January 16th, the two will embark across the country to make their film “Project 365?, in which they will spend the entire year traveling the country climbing to raise awareness for diabetes. Along the way they hope to inspire diabetics and non-diabetics to realize their full potential and embrace a life without limitations. You can read about their film and how you can help on their IndieGoGo page and follow the journey on their website, Facebook and Twitter. Steven expressed fondness for the JDCA mission on Twitter and recently took the time to speak with us.
Tell us a little bit about the interesting—and surely scary—journey that led to your type 1 diagnosis.
I was studying abroad—or relatively abroad. I was in Alaska at the time and it was a fairly high stress point in my life. I was separated from my parents for a year or so going to school up there and I got something that felt like the flu but wasn’t getting better. It actually started getting worse, I started to have headaches, and at one point I thought it might be a migraine condition because I started seeing some things and my vision began to be effected. Oddly enough the people that I was with really didn’t think diabetes and neither did I because at that point in my life I saw diabetes as something for only old or overweight people. I was 16 at the time so it really didn’t appear on my radar.
After a month of this though it kept getting steadily worse and I kept feeling more and more lethargic. I actually wound up having some seizures and being rushed to the hospital. At that point they figured out that I had some form of encephalitis, which is an infection on the cortex of the brain. They attributed this to the fact that my white blood cell count was around four and at that same point they diagnosed me with type 1. At that point they didn’t really know, like the chicken or the egg per-se, which came first. Basically I have a couple of days missing from my life that I still have no re-collection of. I woke up in the hospital and they told me I was going to be taking shots for the rest of my life, that I was going to be very limited in what I did, conscious of what I ate, etc. They also told me about all the consequences of improper care, all of which actually ended up being a pretty big motivator for me.
Did you end up having to leave the program?
No, actually. I was in the hospital for a week and a half to two weeks and once we were able to establish what it was, everyone was really super supportive in getting me back to health. There was a good balance of support and also independence, which was really important and a big key towards being able to manage my condition as well as I have. After the hospital they helped me through the transition back into the program.
You say your inspiration for Living Vertical and Project 365 came when you and your wife Stefanie climbed Devil’s Tower in Hulett, Wyoming together. What else over your years with diabetes has led you to this project?
When I was first diagnosed I really didn’t want to accept the fact that medication was going to be an absolute necessity. I had it engrained in my head that I could be active and eat a good enough diet that I would be able to somehow avoid taking medication for diabetes. Obviously that’s not accurate, but there was that desire to use less medication and be less reliant. From the time I was diagnosed all I wanted was to just be normal and I don’t think I’ve ever achieved that on any level, but on the other hand, diabetes has pushed me to be more independent and push the envelope of how much I can do for myself. I feel that commitment when I’m out in the wild, exposed, be it climbing or backpacking or whatever, the level of responsibility and commitment increases because you can only depend on yourself if something goes wrong. It’s really to test and push myself towards more self-reliance, which is something I’ve always been after.
Tell us about the set-up and yearlong journey that will go into the making of Project 365.
Basically we’re starting on Monday January 16th. We’re out in San Diego now and we’re making a year-long big circle through North America, starting here because we’re staying with my sister-in-law and sort of using her house as a home base. We’re going to be doing a few short trips for several weeks at a time through the southwest to Joshua Tree, Red Rocks, Sedona and so on. There are a lot of areas in the southwest where we can begin our climbing in the winter without having to really worry about being hammered by the weather. Once the spring comes around and weather is less of a factor we’re going to start heading north and we’ll be up in Yosemite, El Cap in Yosemite and then from there north to the Cascades for Mount Rainier and Mount Baker. From there on we’ll be in British Columbia, Idaho, South Dakota, Wyoming and then working our way east. By summer and fall we’re hoping to make our way down the east coast, eventually heading back to San Diego where we will finish the project.
I’m not waiting for a miracle cure from walkathons. My health is my responsibility and I’m going to try and exceed the health and expectations of non-diabetic people alike by taking my own path.
Our general goal is that we want to climb every day for 365 days. Of course we are factoring into this that accidents can happen and weather might prohibit us. My wife and I are doing all the filming and climbing. As the project has gained interest we’ve actually had a few people offer to come help us with the filming and photography. With climbing, we want to make a great documentary that teaches people about the diabetic condition and climbing considering I see a lot of misunderstandings and misconceptions about both. We’ll be living out our station wagon, fully prepared to be doing more with less.
What are you hoping to ultimately accomplish with the project?
I think there’s a more a series of goals that I have in mind. From the outset the project has been very organic. It started with a hypothetical “what if we did this?”, thinking back to some six month climbing trips we’d done before. I never really thought it would be that big of a deal to extend it—then my wife Stephanie said to me that we could try this and make an effort to really share it with other people. The whole funding for it has been from friends, family and people who have taken interest in it. We’ve sold a lot of our stuff to have the money to finance this so it has really come together one step at a time. The goal of the project I think has moved a lot in that same fashion.
One of the main things that I would like to see is that this is used as a tool to empower people with type 1 and other chronic illnesses. There’s a lot of people I’ve connected with through this who have chronic diseases that aren’t type 1 and I see how the mental fatigue of dealing with conditions like this can become incredibly overwhelming. Conventional fitness, going to the gym and such, helps the body but can’t really tackle that mental drain and help empower you.
I’m really hoping this can be used as a tool that even if someone doesn’t have any interest in climbing they can still see there is a need to connect with nature and how you can take responsibility of your condition to the point where it’s not limiting your life. I’m aware that I’m still going to be giving myself injections for a while but I don’t let that slow me down or have a negative impact on my life. I want to communicate that feeling that it’s possible for people with diabetes to overcome and achieve. For non-diabetics, I want them to learn about the kind of time, knowledge and dedication that goes into constantly managing an invisible condition.
The JDCA aims to be an independent analyst of the type I diabetes philanthropic landscape. We are seeking to form a paradigm-shifting coalition of donors who will work together to facilitate a cure for type 1 diabetes by 2025. Two of our major tenets are the importance of defining a cure and establishing a cure-by date.
What is your definition of a cure? What restrictions would have to be lifted off a person’s lifestyle in order for you to consider something to be a “cure”?
For me if it’s going to be a cure it would have to be something that is 100%: no more glucose monitoring, no injections, no check-up’s. The body should be producing its own insulin through organic means, not through some other devices. Maybe a check-up here and there, normal doctors visits that would ensure that everything is still in tact. That’s a very interesting aspect of what the JDCA does and something I really like, that I’ve never really heard anyone ask or pose that questions about what do we actually consider a cure. Everyone throws this terminology around very haphazardly; there a lot of devices, such as the artificial pancreas, that are neat and everything but at the end of the day what I see is that the fundamentals of diabetes treatment hasn’t changed a whole lot.
A cure has to be something that’s 100% organic and happens without devices—or devices that are only needed to input the cure, like a stem cell implantation—but once the cure has been applied that should be it.
You mentioned to me that you think in order to evoke change, some cages need to be rattled. How do you think the current model of the diabetes charitable universe or cure research needs to change?
I feel like a lot of emphasis is placed on the medical or pharmaceutical aspect in terms of what people are taking with a lot of focus placed on the condition as opposed to placing the focus on battling the condition. My A1c has never been over 7 and this is certainly helped by a focused diet and understanding my limitations and the rules of the game. By accepting that it’s a lot easier to be healthier than most people. I’m not sure how politically correct this is, but at the end of the day I see a lot of companies that want money to give to pharmaceutical companies and there’s people of all different ages bending all their efforts and motivations to give money to these companies which will do research for a cure that ultimately is still going to cost them money down the road. This will be perhaps decades after their children, grandchildren and so on will have been doing walkathons and that cure will still cost them. Ultimately those who will profit will be the bigger companies, because they’re not doing their work for free, and the pharmaceutical companies will also be making money off of it.
At the end of the day the people who put their faith in these organizations are just going to go on giving and giving and giving and not really getting much in return. What I look at as being important is that all these things we have to do, like blood tests and injections, can be used to enhance our lives and control. Of course there’s inconvenience and suffering but that’s not the worst thing that can happen to you. I don’t have an axe to grind against the establishment approach and I think that their approach works for some people, but for me I’m under no misapprehensions about a cure being around the corner. I look at diabetes as something I can deal with and something that’s a part of my life–and likely always will be. I’m not waiting for a miracle cure from walkathons. My health is my responsibility and I’m going to try and exceed the health and expectations of non-diabetic people alike by taking my own path.
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