On this week’s 51%, we continue our conversations with the Carey Institute’s Logan Nonfiction fellows. Documentarian Tsanavi Spoonhunter previews her upcoming film, Holder of the Sky, on efforts to preserve treaty rights for native tribes in Wisconsin. And reporters Jillian Farmer and Cheryl Upshaw discuss their in-progress podcast, 50-Foot Woman, documenting life with the rare pituitary disease acromegaly.
Guests: Tsanavi Spoonhunter, producer/director of Holder of the Sky; Jillian Farmer and Cheryl Upshaw, producers of 50-Foot Woman
51% is a national production of WAMC Northeast Public Radio. Our producer is Jesse King, our executive producer is Dr. Alan Chartock, and our theme is “Lolita” by the Albany-based artist Girl Blue.
You’re listening to 51%, a WAMC production dedicated to women’s issues and experiences. Thanks for joining us, I’m Jesse King. This week we’re continuing our conversations with some of this fall’s Logan Nonfiction fellows at the Carey Institute for Global Good. The program is currently remote for the coronavirus pandemic, so unfortunately fellows aren’t getting their usual retreat at the Carey Institute’s campus in Rensselaerville, New York – but its writers, filmmakers, podcasters, and photographers are still developing their projects and swapping advice through various online seminars and workshops.
Tsanavi Spoonhunter spoke with me from Montana while filming her upcoming documentary Holder of the Sky. Spoonhunter is an American Indian reporter and filmmaker, and citizen of the Northern Arapahoe Tribe. Much of her storytelling focuses on Indian Country, including her latest documentary short, Crow Country: Our Right to Food Sovereignty, which has been screening at various festivals and venues. As she heads into the Logan Nonfiction Program, however, her focus is on Holder of the Sky.
Tell me about Holder of the Sky. What is your focus with the film?
So Holder of the Sky chronicles several tribes in the state of Wisconsin and their struggle to retain their treaty rights that were made with the government back in the 1800s – and how those treaty rights are still being challenged today, and what that looks like in present day. I focus on the Lac du Flambeau up in northern Wisconsin, the Oneida Nation, which is just outside of Green Bay, and then the Menominee tribe.
For those who don’t know, what are some examples of the treaty rights that you were examining in the film? Like what do treaty rights usually entail?
Yeah, so a treaty right is a binding agreement between two sovereign nations. When the U.S. government started relocating tribes to reservations, that affected tribal life, their daily life. Tribes weren’t able to go and access their traditional homelands for food or any of the things that they did. And so with those agreements, tribes were able to negotiate, “If I go on to a reservation, I’ll be able to go off the reservation to hunt and fish anywhere that I want.” That is an example of one of the tribes in Wisconsin that we’re following: they were able to go out and practice their traditional spear-hunting rights. And then, you know, there was an uprising known as the Walleye Wars, and this is just one example in the film. Tribal members went off the reservation, and were hunting using a spearfishing tradition, and local, non-tribal folks got really upset, because they felt that tribes were given a privilege – that they were given more privileges than any other U.S. citizen, without really understanding the treaty rights and what tribes sacrificed in order to obtain that right to spearfish. I think that’s a good example to highlight, you know about treaty rights in the United States. And it plays to the present day: we’re following one character who was recently shot at last spring while he was spearfishing.
Most of the tribes you’re looking at are in Wisconsin. What brings you to Montana?
So there’s actually a national organization – it’s evolved over time. But that event that I described earlier about the spearfishing, there was an organization called PAR – but today, it evolved, and it’s called the Citizens for Equal Rights Alliance. And it’s basically a group that challenges the rights of tribes. And so one of the leaders of that organization lives here in Montana. She was challenging the rights of another tribe that we’re following in Wisconsin.
I found the title Holder of the Sky from a creation story of the Oneida Nation in Wisconsin, and the Oneida Nation is probably one of the most powerful nations in the country. They were originally from New York, and they were moved to Wisconsin by treaty. And so they were given a certain acreage of land. Later on after that treaty, a non-native community wanted to establish a town on that land. And the tribe resisted, and they were like, “No, we do not want a town here. This is our treaty land.” And the state said, “No, that’s fine. They could start a town on that land.” And so ever since then, there’s always been some kind of strife between the two communities. But as of recently, it’s gotten even worse over jurisdiction. The two communities are the Oneida Nation and the village of Hobart, and the village of Hobart is home to a lot of Green Bay Packers – it’s a pretty wealthy suburb outside of Green Bay. And they’re trying to expand on the tribal land. And the tribe is saying, “No, this is our land. We want to keep our land.” But then Hobart is saying, “No, we were trying to buy land to expand.” Elaine Willman is part of the Center for Equal Rights Alliance, which is the group that I had mentioned earlier that challenges the rights of tribes across the country. And so she was flown in to help with a jurisdictional issue that was happening between Oneida and Hobart. And so she’s just a very interesting character. So yeah, we’re here filming with her in Montana now. And she’s actually doing some work against the Flathead Indian Reservation, but that’s another subject. But she’s still heavily involved with Oneida and Hobart relations.
Tell me a little more about what’s going on here, from both sides. What argument is the village of Hobart making to say that they should be allowed to expand? Because to me, obviously, I don’t know a lot about the situation, but it looks like it should be pretty cut and dry. There’s an agreement giving this land to the Oneida Nation. So it’s theirs, right?
Yeah, that’s the thing, that’s a good question. And that’s what I’m hoping to answer in the film. Because when you look at it, and you learn about it, it’s like, “This makes sense. Why are they resisting this?” Right? And with Elaine, that I’m talking to now, and the village of Hobart – their argument is that they want to expand, they want to build development, they want to have the tax base to have a better support for their communities. They just want more money, I guess. And with tribal communities, it’s a whole different concept of land management. They don’t see it as economic development. They care for their land, like, Oneida bought some land just so that it wouldn’t be developed. So there’s these different concepts of what land is between the two groups, I think, and that can get a little bit confusing for one to understand. Especially with Hobart, because they sit on the tribe’s entire treaty land, it encompasses the village – I get it, you know. They’re trying to build more, it was predominantly residential, and they want to build more business development. I mean, I understand. But at the end of the day, it’s not right, given the promises that were made to these tribes back in the day. And it needs to be honored and upheld.
On another note, I will say, is that CERA, the Citizens for Equal Rights Alliance – their whole mission is to terminate tribes. That’s their whole thing. They’re like, “We’re one citizen. Tribal nations shouldn’t get these extra rights. We should all be treated the same.” And so there’s just…there’s a lot of misunderstanding, I think, thrown back and forth on each side.
How common are disputes like these between Native communities and their non-native neighbors today? I mean, this was happening at the very beginning of our country, it has not gone away, but are these kinds of disputes ramping up over the past few years? And how is the way that they’re taking place changing?
You know, that’s a good question. Because, you know, with the research I’ve done, it’s always been there. And I think that a lot of times, issues revolving Indian Country and the conflicts that they’re fighting don’t get as much attention. And so it’s very new to a lot of people, and even to myself. Talking to some of the experts about the Walleye Wars that I described earlier, they’re like, “Oh, yeah, it was like a really big thing.” And maybe it’s because it was in the ’90s, and I was, like, 10 years old, but I don’t remember [it]. I’ve never heard of it until I came here, and it was like, “Oh, my God. This stuff is still happening.” But it’s not as overtly displayed as it was before in the past. It’s more through litigation, it seems. For example, with Elaine, they’re always in a battle.
Something that I found in the research as well is that all of this was kind of strategic. I mean, this is a note that I need to explore a little bit further into, but they knew that border towns and these issues were gonna be, perhaps, detrimental to tribal communities. Putting non-native residences bordering them or on them…like, border towns are an issue in Indian Country. And so yeah, people experience a lot of racism and different things like that.
In your reporting, what do you see as the biggest issue facing Native communities right now?
Oh, gosh. I’m so just embedded [in this film]. I mean, I even moved to Wisconsin, so I feel just so detached from everywhere else. When I think about it now, though, racism is a long, lingering thing. Just that misunderstanding, and not being able to see the issue from both sides – it causes problems for tribal communities. Like with the Oneida Nation, it’s just misconception. I feels like [that’s] the most detrimental issue that Indian Country is facing right now. You know, you have a misconception of Indian casinos bringing wealth to these tribal communities. And you have Indians relying on federal government services. It’s just an entire, like, snowball effect. And so I think that’s the main issue.
You’re just getting started in the next session of the Logan Nonfiction Program. What do you hope to get out of it?
Yeah, I met with my mentor of the program yesterday, and even it was only an hour, I was able to download so much information from her about the industry and about how my film can be more impactful. I suppose, like giving creative feedback, constructive feedback – and that was just an hour. And so I’m very excited to go into the Logan Nonfiction Program, because we have workshops set up with different industry folks, and then we’re able to go in and workshop our own projects as a cohort. And so that’s what I’m excited for. I’m excited to build community, and learn more about the industry. I know it’s gonna benefit Holder of the Sky and so that’s something that I’m really excited for.
Our next guests are using the Logan Nonfiction Program to develop their podcast, 50-Foot Woman. Jillian Farmer is an award-winning journalist and creative writer based in the southern coast of Oregan, and Cheryl Upshaw is the former managing editor of The Humboldt Sun, Lovelock Review-Miner and The Battle Mountain Bugle in Nevada. They met during a brief stint as coworkers in Oregon before the start of the coronavirus pandemic. With 50-Foot Woman, they hope to increase awareness of a number of rare conditions and diseases — starting with acromegaly, a pituitary disease in which the body produces too much growth hormone. Farmer herself was diagnosed with acromegaly in 2018.
How did you find out you had acromegaly?
Farmer: I was likely born with the disease and the brain tumor that comes with it. I wasn’t diagnosed until I was 29 years old, and the diagnosis saved my life. [The tumor] was about a centimeter away from what they said would make me just fall over. The tumor was so large, it was sitting on my cerebral arteries, and it was sitting on my eyes, it was sitting on my eyes. It was actually starting to make me go blind. My symptoms were incredibly severe, but because the disease is such a slow grow – and I’ve said this on the podcast, anyone who listens when we’re finished, will hear this – but I’ve described it as kind of being like a frog in a boiling pan. You don’t notice, and you start to explain away a lot of the symptoms because doctors have been treating the symptoms as symptoms – as they come up.
I was lucky enough to have a dermatologist – and everyone has a different diagnosis journey – but it’s not everyday that a dermatologist gets to diagnose the brain tumor, and a very rare disease. But she saved my life. They were able to do brain surgery, and it was transsphenoidal surgery through my nose. The podcast, the first season goes through the emotional journey and the medical journey. We’re going to be talking to medical professionals, and we’re also talking with other patients and how they’ve experienced their medical journey, both through the U.S. healthcare system and the Canadian healthcare system. So we’re going to have a juxtaposing analysis of both. Because this is not only a very rare disease, but it has no cure. Every patient, they could see the tumor grow back. And the difficult thing about acromegaly is every inch you give the disease you cannot get back. And so if your levels get out of control – like your growth hormone, or your IGF-1, which are the big two that they look at – if they get out of control, you know, for me last year, I had a herniated disc. I had a few other things happen. And now it’s something I have to be careful about, you know, not happening again.
If you don’t mind my asking – I just want to make sure that I’m understanding things a little bit better. So let’s go a little more into what the disease does in the body and how it works. Being a pituitary disease, it’s all hormonal, right?
Upshaw: Yeah. And this is going to be the like, simplest version of it, because I don’t remember all of the specifics on the scientific end. But essentially, your pituitary gland releases growth hormone. And then as it passes through the liver, a secondary hormone called IGF-1 is then released. And that’s just a normal thing that happens with everyone. There’s a normal amount of IGF-1 in every person’s body. But with a person who has acromegaly, the amount of growth hormone and IGF-1 in their body is quite a bit higher. Jillian mentions in our podcast that when she was diagnosed, the normal person’s IGF-1 count would be around 200. And for her, it was 1600. So you know, eight times higher. Once you hit puberty, it stops [affecting] the long bones of your body and starts doing it to your face and to the soft tissues. One of the soft tissues that it can affect is your organs, so your heart can be very dramatically affected, and it can be fatal in that way.
Farmer: And this disease has also been known to cause colon cancer and breast cancer as well. Because it’s the pituitary, I mean, that is the master gland that affects your entire body. So if something goes wrong with it to this degree, it affects your entire body. After my diagnosis, my doctors put me through a battery of tests to see exactly how affected I was, and to see if there was anything else that needed emergency attention, like, you know, potential heart disease or an enlarged heart. And thankfully, that was not something I had to deal with – but other patients do. For my case, and for the case of many acromegaly patients, but not necessarily all, is the tumor itself can produce growth hormone, too. And so you’ve got this big mass in your brain producing even more growth hormone. And that’s why it’s so important for them to cut that out, as well as the size of the tumor. The emergent part of it is also getting your levels under control, so it stops affecting your body.
You mentioned earlier that acromegaly is hard to diagnose because the symptoms can creep up on you. What are the early signs of acromegaly?
Farmer: In children, I had gigantism as a child. But I’m only 6’1″ – we will talk about why I am not taller on our podcast, it’s very complicated – but in children, they grow very fast. For example, when I was in third grade, I was as tall if not a little taller than my teacher, who was about 5′ tall. One thing I also had as a child, which is something that adults with acromegaly need to look for, if they’re not diagnosed, are swollen hands. My family called them, like, fleshy hands. The soft tissues, they swell with this disease, and so your face can get really puffy, your body just gets really swollen. That’s what led to my herniated disk last year. Another common one is your teeth will start to move. I had perfectly straight teeth, and they’re crooked now. A lot of patients actually get a gap in their front teeth or their bottom teeth. Another common one is the jaw, it will make the growth plates in jaws lengthen, and that’ll make the jaw protrude.
Unfortunately, it does disfigure you, it does change your face. I remember looking in the mirror thinking, “You know, I don’t look…I don’t look the same.” And as an adult, you don’t see that often. You don’t have that issue. Like my mom, she stopped me at one point, and she just kind of grabbed me and looked at me and said, “You look different. You look different.” And so I mean, that’s a symptom. But one of my common symptoms that I had early on was skin issues. I got really big cysts, and that’s what eventually led me to be diagnosed by my dermatologist.
And so you’ve decided to make this podcast on your story here. What are you learning from speaking with other patients and medical professionals?
Farmer: Yeah, we’ve already been able to speak with a woman in the United States who has become a huge advocate for bringing awareness to the disease, and her name is Jill Cisco.
Upshaw: Jill Cisco is a really fascinating person to talk to in that, in addition to being a patient, she spends a lot of time talking to both doctors and other patients. A lot of what she does is bringing people together to discuss the disease. And I think that’s a big thing that we’ve kind of been learning: because it is so rare, finding a community of like minded people who are suffering the same things is really valuable, because no one else gets it.
Farmer: I still haven’t met an acromegaly patient except you know, through our support group on Facebook. And the woman we spoke with in Canada, she talks about this as well. When she was able to meet her first accurate patient, yeah, you meet people who who get it. And it’s a difficult disease to understand. Most people can only identify it through thinking of celebrities that have it, such as Andre the Giant, and the actor who played Lurch. For a woman with this disease, you can’t really look to a celebrity who has it. I went on a journey after being diagnosed with trying to find a woman with this disease – because a lot of the symptoms are not flattering. They are often called by the medical world as “course features.” As a woman, I really wanted to talk with other women about this, and some other issues that I had to face, things that can be embarrassing. And finding that support group was invaluable. Not only that, but after I found that group, Jill actually pointed me to a women-only acro support group. And that provides a really safe space for women with this disease to talk about this disease and how it impacts some more embarrassing topics and relationships. And there’s also a support group for men with this disease to provide them a safe space to do the same.
How are you doing now?
Farmer: I am doing a lot better now. Of course, there are some things that the disease had done to me back in 2018, and up to 2018, that we’re still dealing with. Like issues with my jaw. I was told recently that I’ve got arthritis of the jaw, and it’s been giving me migraines, so they’re trying to figure out what to do. I’m on treatment, and I will be on treatment for the rest of my life, to keep it under control. That is OK, like, you get used to it. And you’re able to function a normal life and have like a normal lifespan – so long as the disease is kept under control. But right now, I am probably the healthiest I’ve been. I think a good scope of when I say that is I’ve had one doctor say to me, because I was likely born with a tumor, I don’t even know what being healthy feels like. So for me to say I feel good? Like, yes, I do feel good. For a normal person, I don’t know what that would look like. But for me, I am doing very well right now.
Upshaw: And to that point, part of the reason we want to do this and help create awareness around acromegaly, and create awareness around the U.S. healthcare system, is despite the fact that that tumor is gone, she still has symptoms, she still needs care. And the U.S. healthcare system, and insurance companies in particular, have made it really difficult for her to receive that care.
That actually does lead into one of my next questions. What does that treatment and monitoring look like, and as you’re getting treatment and speaking with others, what are some of the differences you’re noticing between having to navigate that in the U.S. versus in other countries?
Farmer: One of the big ones is access to treatment. Some of these treatments are chemotherapies that treat you know, carcinoid tumors of the small intestine, for example. I’m on one of those, on a low dose. That treatment I get every six weeks. And that treatment, last I heard, was about $37,000 a dose. Last year, it was a bumpy journey keeping insurance due to many different reasons, and getting consistent treatment was difficult. When I got a steady insurance and things were approved, had to get this treatment through a specialty pharmacy, because I live remotely. And that’s something we discuss also in the podcast, is how living remote can affect treatment as well. But dealing with a specialty pharmacy, and trying to get the first order, that copay was, I believe, about $3,000. That’s a copay I would have had to pay every dose. They didn’t ask my financial situation, they just said I can’t afford it unless [I] have copay assistance. And to somebody who has an incurable, very rare disease, that was devastating. My husband and I had to have a very serious conversation if I could even get treatment, and what that could mean. Because in past experience, if I don’t have treatment, say for two months, my levels could get out of control. And who knows what could happen. It’s kind of like a Russian roulette game, you don’t know what the disease will do next to the body and how it can end you up in the ER, or give you something else you can’t roll back, something else that will then have to be addressed by specialists. And so thankfully, my doctors, though, are very aware of all of this. And they coordinated with a copay assistance program that they do for many, if not all, of the acro patients that they treat. And that has been taken care of. Without that copay assistance, I would not be able to afford my treatment. As it is, I meet my out-of-pocket max deductible every year, usually in January. But then in comparison, Cheryl, if you want to tell her about what we’ve learned from who we interviewed in Canada?
Upshaw: Yeah, absolutely. So the woman that we spoke to in Canada, one of the things that she told us was, and it kind of blew my mind – she has a nurse that just drops by her house, I think it’s once a week to give her her treatment. That’s not an additional cost for her. It’s just something that’s provided, because she also lives remotely. So there’s that. And it’s not that Canadian healthcare is perfect, as she explained to us. It’s not that she doesn’t have to pay anything, but it’s not as devastating to her. No one would ever say to her, “Give us $37,000 per month, or per six weeks, to get care.”
Farmer: The $3,000 copay per dose. That was not something that she faced either.
Upshaw: No, she didn’t have to worry about that. There is private insurance in Canada, there are things that she does have to worry about and work with. But basically, they work with the drug companies directly to make it a lot more affordable. And some of the patients that she’s worked with, they don’t have to pay anything, which is not something that we’re hearing from American patients.
Farmer: No, and it’s very interesting. Like in the support group, a lot of patients in the United States go there seeking advice on how to deal with insurance or other issues caused by the American healthcare system. And patients internationally express amazement sometimes, because they don’t face the same issues.
Well, I feel like there’s so many other things that I could ask, but we are running a little bit low on time. So I’m just going to have one more question for you. You’re wrapping up your time with the Logan Nonfiction Program. How has that experience been?
Farmer: It’s been a very fun, very intense fellowship. And working with Cheryl has, I mean, I wouldn’t have the interest in telling this story alone. It’s a very difficult story, and to have a partner help navigate some of these more difficult conversations of, you know, facing death, dealing and thinking of death as an acro patient, and dealing with the potential hereditary aspect of this…And raising awareness for a disease people don’t know about, that people in the medical world are very interested in also learning more about. I have a great partner in doing this. Hopefully, our goal is it’s going to make an impact.
Thank you for listening to 51%. 51% is a national production of WAMC Northeast Public Radio. That theme underneath me right now, that’s “Lolita” by the Albany-based artist Girl Blue. The show is produced by me, Jesse King, and our executive producer is Dr. Alan Chartock. A big thanks to the folks at the Logan Nonfiction Program, Tsanavi Spoonhunter, Jillian Farmer, and Cheryl Upshaw for contributing to this week’s episode. Until next week, I’m Jesse King for 51%.