Being together in the midst of grief

Did I have any strand of concern, upon entering into training with hospice and working towards my license as a mental health counselor, that it had been too long since I had lost my mother for me to truly relate to grieving clients authentically? That my direct experiences with grief were becoming too far in the past for me to tap and into? Yes–I think I did. My time with hospice in Taos this winter marked the 9 (or 10?) year anniversary of my mom’s death. Something about that amount of time, a whole decade, seemed significant. Long enough ago that now I have to google her obituary to remember the date of her passing. During this last winter, marking that length of time, it seemed to me that it was possibly an insurmountable distance that there was no coming back from.

As it turns out, my grain of concern that I was becoming distanced from my grief was blown off the table with a dramatic flourish last month. Just as I was finishing up hosting my first ever 6 week therapeutic group on grief Ireceived news that one of my close family members was confronting diagnosis with a terminal illness. 

Nevermind the fact that I am never moving away from my grief. There’s the weight of not my past, and also her past, and also the past that’s behind us, which as my mother, she was my gateway from and to. During my life neither of us ever had the opportunity to reach back into our shared history and the common threads of our difficult childhoods, either separately or together. There’s the sadness of certain memories, so vast and dark that when they visit, they threaten to take me out of commission for hours or days. These hardest memories seem to be kind, though. They know to visit me only briefly, never dropping down close enough to fully materialize. Maybe they never will because they know that I am afraid of drowning. 

There’s the depth of disappointment I am left to sift through not just about losing my mom, but about everything my mom couldn’t be for me, and also everything that she didn’t get to do for her. How I move in relation to my grief is like the earth rotating in respect to the sun. Held up in contrast to the weight and depth of all the past, often it feels that today I am a point. I am a child holding up a blade of grass against the sun in the sky to make a puppet show, playing with the contrast of dark and light, laughing at the impossibility of the distance between my fingers and the explosive body and the skin on their raised hand, tinged tan, melanin pigments absorbing electromagnetic radiation from way up there in a place where she’ll never go. I am so small, defined by orientation towards a large, distant, massive force emanating light and exerting a pull on me at all times. My every movement is bathed in the light of this larger force. There is no “forwards” or “backwards” to the way that I move in regards to my grief. I revolve around it, so that every step away is also a moving with and towards. 

For weeks I wrote and rewrote what I might share with others about where my grief process is right now. I sat for hours with my brain in a heavy fog. I wrapped myself up in blankets and layed on the couch looking out the window. A number of times I walked outside in the evening when it’s getting dark, waiting for tears to boil to the surface. There is so much turning through my mind and heart. My father’s illness has been difficult to diagnose. Our relationship over the years has been challenging and complex, especially when it comes to the territory of illness, healthcare, mutual care, and mental health. The story of this grief is far from over, so when I share about grief, and when I facilitate sessions of pain friend, I can only authentically share from the place that I’m in: raw, soft, indeterminate, morphing, shifting, peeling, bruised, fresh and dewey with tears. I have been drawing on the reserves down in the cellar of what has been my life, ruminating, distilling, drinking, preparing to make a way forward into a life where some future version of me that I’m birthing exists without a living father. But I don’t know what will happen. Potentially, there’s quite a bit of time and experience between me and this loss, and I’ll be navigating what it’s like to share some of that time with him, and with other members of my family. I am curious about what kinds of experiences you have had with others in your life when it comes to being together in the midst of suffering. 

I don’t know if you believe in destiny, or something like a life path, or that we choose our own life stories on some level. I’ll tell you that I seem destined, maybe just by the nature of my character, to wear open wounds right on my sleeves where others can see them. I don’t watch from the sidelines. I bring myself right into things. I learn by letting myself be muddied, dragged through, and transformed. Curiosity, fearlessness, and some unknowable ingredients too–all have caused me to put myself directly in the path of suffering, confusion, chaos, and even violence. Doing so is what has given me the immense gift of being able to offer guidance to others not from the elevated place of the counselor, but right by in it, side-by-side others, as a fellow sufferer and a friend. Going through grief continually throughout my life I have learned to build and rebuild a shelter within myself where the mystery and the beauty that accompany grief and loss might come to sit and dwell. Like a hummingbird returns to pollinate at that same tree outside your window where last year you offered nectar to it. Whenever she hovered there you got silent and still. I try to hold that kind of nurturance place for grief. 

I love it when that grief shelter isn’t just something that I hold and protect within me, when it extends beyond me and exists in the space between us and our shared experiences of loss and pain. I am asking you write to me and share with me a memory or a story that you have about closeness and intimacy in times of grief, illness, or sadness. I invite you to get as granular as you can about these experiences. Where exactly were you? What were you doing? What sensations were present? I invite you to evoke the memory in vivid detail. In recounting it you might discover something you hadn’t seen before about what it was exactly that made this experience supportive and nourishing. I offer this collective visualization that you can use to share your story with me and others without signing your name. It’s anonymous! If you’d like to connect with me directly about your story rather than share it via this activity, you can also feel free to email me. 

Learning what kind of presence it takes to be with others during the middle of a flare up, a break up, an episode of shock, an illness a crying spell–either others or my own–these experiences are at the core of my somatic practice. I remember when my mom and I had a rare moment alone during her 14 months in a hospice facility. She moved towards death like an inchworm measuring the marigolds–slowly, pretty much uneventfully, with knitting projects, gelato, and pastries. Since she was in a hospice home, and when I visited her there were usually other family members present, it was rare when I was with her that we weren’t accompanied by a group of people, door ajar. From the time I got the call that she had a tumor in her brain, to the day when she left her physical body, we only had brief episodes of time alone in each other’s presence. Once in a conference room though, during a meeting with my uncle, my second cousin, and a bunch of hospice staff, we were left alone for just a few minutes. Others left to get coffee, or a snack, or just to give us a moment of space. We turned to each other and made eye contact just briefly, wordless. She may have said my name out loud. I think that I said something like “I can’t believe….”. A loud wail came out of my body. Then I jilted my body away from her, turning my shoulder away, turning into myself, as if to protect her from my pain. As fast tears spilled out of her she wiped them away. It is so hard to sit in these moments and let sadness be. It is so hard to be with pain, whether it be our own or another person’s. 

There are common things that you’ll hear described if you read or study about what kind of presence is required to sit “at the bedside” of someone engulfed in pain, or what kind of support is most supportive to offer someone grieving. 

• You’ll read not to place extra demands or expectations, or to schedule hard & fast appointments. 

• You’ll hear that everyone processes loss differently, so it’s important to be non-judgemental and open to whatever a person is feeling. 

• You’ll probably be told not to cringe, perseverate, or say something like “oh my god, that’s terrible!” or “I could never imagine going through that!” when the pain of someone’s story threatens to overwhelm you. 

• You’ll probably (hopefully) also hear to avoid well-wishes that take the tone of “get better soon!” “you got this!” I’m sure you’ll feel better tomorrow!” “I’m sure that you’ll feel better tomorrow!” or “everything will be alright!”

• Many grief and death workers talk about the importance of simple body comforts. A meal dropped off without any questions or door-knocking. Homemade chicken soup. I think about some of what my friends have offered me in hard moments. Slipping under the covers into a bed with clean sheets, the shades partly drawn so that the light is soft and cool, a gentle fan blowing. A hot water bottle. A weighted blanket. A tall glass of ice cold water with just a few drops of liquor and lavender bitters. There’s the beauty of fresh fruit, incense burning, flowers blooming, or pleasing music played through a decent set of speakers adjusted to just the right volume. 

Consider what it means to be “present”. Often, even when we want to be with suffering, the difficulty of it means that we’re caught in the in between, inching towards, but cringing away. Opening our eyes, and we judge, condemn, minimize, or label. We peel open a bandage to take a look, and then before allowing airing out, diligently observing, applying saline or balm or some other medicine, we cover it back over, impatient to not have to see what threatens to scare us, or even horrify us, overwhelming our capacity. We fear that in these moments we’ll surpass our window of tolerance, our nervous systems and our emotions will erupt out of control, or we’ll see something that we can’t unsee, something that we have to live with forever. 

“The capacity to give one’s attention to a sufferer is a very rare and difficult thing; it is almost a miracle; it is a miracle. Nearly all those who think they have this capacity do not possess it. Warmth of heart, impulsiveness, pity are not enough.”

–Simone Weil, an anti-fascist activist, tuberculosis patient, philosopher, and mystic, who died on hunger strike in solidarity with residents of German-occupied France at the age of 34 

Send me an email and tell me a story about what has been most comforting to you. Here’s a link to that collective visualization tool if you’re willing to share your experience with me. 

Interview transcript: “Understanding and Transforming the Medical Industrial Complex”

Interview transcript: “Understanding and Transforming the Medical Industrial Complex”: Adar Higgs interviewing Mordecai Cohen Ettinger and Jen Deerinwater for JustUs**

listen to the audio recording of this interview

Image description: graphic with a light pink background. Black text at top reads, “HJC’s Spring Pol Ed Series Starts March 2nd!” In the center of the graphic is a piece of art by Micah Bazant - it is a black and white drawing of two disabled people of color, sitting closely together, surrounded by large flowers, a butterfly and a hummingbird. One person uses a wheelchair and a ventilator, and has a drink with a plastic straw on her tray. One person is fat and uses a cane. They are smiling and radiating love. The drawing has been colored in by Brunem using pencils; bright yellow and orange flowers, blue sky, an amber monarch butterfly, the people are wearing green and pink lip colors respectively. Black text below the art reads, “Understanding & Transforming the Medical Industrial Complex, Part 2: Climate Justice Edition. More info and to enroll: tinyurl.com/HJCSpring23Enroll. The Health Justice Commons logo in red and black is in the bottom right corner of the graphic. 

Show intro: [a portion of ‘Water Get No Enemy’ by Fela Kuti plays in the background]

Good morning you are listening to KDUR 91.9 and 93.9FM, also streaming online at KDUR.org. I’m your sweet and relentless, bothered and curious, semi-transient, multi-passionate radio host Adar, bringing you “JustUs”, a show about public health, mutual aid, and community based solutions. This is a show that features intimate conversations about complex issues. I’m bringing you place-based conversations recorded throughout the rural Southwest, broadcasting on stolen lands in so-called Durango, CO.

Adar: This morning I am speaking with Jen Deerinwater and Mordecai Cohen Ettinger about a course that Health Justice Commons is hosting focused on disability justice and also climate activism. Good morning, thank you so much for coming on the show, Mordecai and also Jen, I could not be more excited to talk to you about Health Justice Commons and the upcoming training that you all are putting on, well it’s a course Understanding and Transforming the Medical Industrial Complex, Part 2: Climate Justice Edition. I would love for you both to take time to introduce yourselves more fully, and then we can get more into this course, what it’s about, and who it’s for.

Jen: O'-Si-Yo', Hello, this is Jen Deerinwater. I am a bisexual, Two Spirit, multiply-disabled citizen of the Cherokee Nation of Oklahoma. I am a freelance journalist, I am a contributor at Truth Out, and I am the Founding Director of Crushing Colonialism, which is an Indigenous media nonprofit. 

Mordecai: Hi, this is Mordecai Cohen Ettinger. I am the Founding Director of Health Justice Commons, and I’m also the Director of Development of Sins Invalid. I am here today with Jen, and you Adar, to share about Health Justice Commons’ Spring Political Education Series “Understanding and Transforming the Medical Industrial Complex, Part 2: Climate Justice Edition”, which focuses on the intersections between climate justice, environmental racism, and healthcare systems as they exist today. We’re excited and we hope that folx will be excited too, and join us. It begins on March 2nd, and we have rolling enrollment so even if you miss the first week or two we’d still love to have you. Would you like us to share a little bit about what the series covers, Adar? 

Adar: Sure, go ahead. 

Mordecai: Well, the series covers the foundational history of the medical industrial complex (MIC) and its roots in white supremacy, eugenics, ableism, essentially all of its ties to interlocking oppressions that support late capitalism; and how those interlocking oppressions are perpetuated within the MIC and really amplified. Also, we look at the complicity of the MIC with corporate polluters and big pharma, and how in many ways, the MIC that is healthcare systems as we know them today are not only complicit with corporate pollution, but also are really profiting from the injustices that climate injustice and environmental racism cause. So we’re looking at these deep connections, and we try to expose them to basically allow people to have the knowledge to take action, and also to really empower us to validate the wisdom of our lived experience, which is incredibly important and powerful and transformative as well. 

The series brings together folks from all over turtle island, the U.S., and some folks internationally as well. We usually have over 100 people participating, and we have members of the disability community, disability justice activists and organizers and then we have activists and organizers from many different movement building and social justice sectors, ranging from reproductive justice, to climate justice. We also have some artists and healing artists and healthcare workers from inside the MIC who are aiming to be agents of change from within the system, especially a lot of med and nursing students. We have midwives, we have doulas, we have herbalists. Everyone is welcome to join, but those are some of the key communities who are often represented. Jen has been a guest presenter and is also one of our co-facilitators of this series, and has been a participant as well, which is such an honor because Jen’s work is so transformative and Jen’s role as a leader in Indigenous rights and climate and disability justice is so powerful and important. Jen I would love for you to share anything that you think that I left out. 

Jen: Oh goodness. I think you covered it all. I’ll just add that like you said, I’ve been involved in the past. This is my third year having some kind of role in this class. I took it first as a participant and I loved it. I actually found out once I enrolled that some of my work was on the course syllabus, which was very…I just felt very honored and very humbled by that. And then last year I got to close out the series with the last class as a speaker, and then this year I get to co-facilitate with a focus on environment and climate specifically with Mordecai, which I’m so excited to do.

Adar: I haven’t gotten to take the course yet, but I’m pretty sure that I’ll be in this course coming up March 2nd. As an immunocompromised person living in a rural, mountain town kind of area surrounded by Native lands throughout the pandemic, knowing about the work of Sins Invalid is one of those lifeline things for me throughout the pandemic that helped me get through. Usually I interview people who are regional in the Four Corners area, but you both have perspectives that are so rich that I need to import you in and get your voice out here on the airwaves. So when it comes to this issue of medical racism, climate justice, and the healthcare industrial complex, Mordecai, how did you get involved in this topic, and then Jen, I’d love to hear that from you as well. 

Mordecai: Thank you. And I just wanted to share for your listeners that in addition to Health Justice Commons, the organization I work with that you just referenced is Sins Invalid. Just to make sure that you and the listeners know you to–

Adar: Thank you (nervously laughing)

Mordecai: No problem. Just to make sure that everyone understands how to pronounce the name. It’s a little bit of a pun, actually kind of calling out the way that invalid has been used against disabled communities in order to stigmatize us. So that’s why it’s pronounced invalid. [The name] says that the sins and stigma that have been cast against disabled people is actually invalid, inaccurate, and needs to be contested and exposed and transformed. So, in regards to how I got involved in this work to disrupt and transform the MIC, I think I flowed into this work through many different streams of my own personal lived experience and survivorship, and also the cross-sector organizing that I’ve done in my life. I’ve been doing organizing for almost 30 years now since I was a teenager, and I’ve done a lot of different work, ranging from disability justice work, learning from the black indigenous and additional people of color leadership of Sins Invalid and now I’m a part of that organization. I was actually part of it as a supporter since it started, so that’s been a big part of my work, but also anti-poverty organizing, economic justice, racial justice, Palestine solidarity, queer and trans liberation, and abolition work. I’ve really done quite a bit of activism and organizing since I was a young adult. So really looking at some of the ways of the oppression and violence of the MIC has really loomed over and harmed our communities really brought to my awareness that the MIC exists as a system of interlocking oppressive institutions not dissimilar from the prison industrial complex, and in fact, they’re overlapping and they’re both very carceral. They’re both oriented to control, and confinement, and surveillance, and really compliance. The flood tides of violence are, the same flood tides of violence flow between and within the two of them. But we didn’t really have formations in our communities to really challenge, disrupt, and transform the MIC, like we do now for the prison industrial complex, like we do now. We have a pretty robust and well-formed abolition movement. So, that’s a big part of the reason I founded Health Justice Commons with the support of our founding vision council. You can find out who other folx are that are involved on our website healthjusticecommons.org. Then also I’m a survivor of medical torture and radiation poisoning myself, along with being disabled, having acquired disabilities because of the environmental toxicity and poisoning and medical abuse that I experienced. And also because of the types of disabilities that I was born with like asthma and scoliosis. So this has been my fight to be in solidarity with my beloved community members, and my own fight too. Yeah, that’s how I got into it. 

Adar: Thank you for sharing. 

Jen: This is Jen speaking. It’s such a long…I feel like it’s such a long and complex answer of how I got to this place and this work, but really I think the simplest way to put it is it’s just a mix of my personal and professional experiences. You know it’s growing up, I’m a citizen of the Cherokee Nation of Oklahoma, and I spent my childhood, up until when I was 18 and moved away for college, living between rural areas of my nation’s reservation in Northeastern Oklahoma and in West Texas in Abilene. So it’s just sort of based on my own experiences of seeing who got care, who didn’t get care, what was happening with the local environment, the way that I was being treated as a chronically-ill Native child growing up and then the experiences I’ve had as an adult. I am also a survivor of medical abuse. 

I almost feel like I have more experiences of some form of discrimination, oppression, and abuse in the medical system than I do good ones. You know, whether it’s some anti-Native issues that I have experienced in multiple healthcare facilities, or whether it’s ableism, fatphobia, anti-queerness, misogyny, you know. It’s also just what I’ve seen with other friends of mine, the experiences they’ve had as Black or brown people, or as immigrants, migrants, you know, just hearing all of these experiences. Just hearing all of these experiences of the ways in which the MIC ends up denying us our humanity, denies us care, and actually in fact ends up creating and worsening health issues and disabilities–and, some of this absolutely ties into the environment and the climate chaos that we’re experiencing right now. You know, Indigenous people, Black and brown people, disabled people, all on the front lines of climate chaos, and all communities of Indigenous or Black and brown people tend to have higher rates of disabilities than do white people. So I tend to look at this as a double, like it’s being doubly-compounded with oppression. 

And the longer that I’ve done the work I do, I’ve been doing organizing work in some fashion for over 20 years now, and I’ve been in various movement spaces, and some of those spaces were more liberal or progressive. I also did a lot of work with democratic candidates in the party when I was younger, and I just got so fed up with everything that I saw within the system. It was so clear that the liberals and the democrats were not only not only going to come in and save us, but they were actually making things worse. Either through their silence and complicity, or through their outright actions of wanting to drill and do other horrific environmental catastrophic projects and such. But as I also have done work as a journalist, like my own research, the more you learn, the more you realize how interconnected all of these issues are. Like Mordecai said about the prison industrial complex and the MIC. 

So many of these issues tie together, and so many people on the left–and I’m not just talking about progressives and liberals now, I’m talking about the radical left, like the true radical left–a lot of them are incredibly ableist. It’s been so blatantly clear through Covid that they don’t care about my life any more than the other side cares about my life. So this work to bring down the medical industrial complex, to bring forward disability justice, and to do all this work in combination with other movements and other communities is crucial. Because whether you’re a native person like me doing work around disability justice, or you’re a native person trying to stop uranium mining on your rez, either way, we’re still in a similar fight, and we have to be there for each other. And that’s a very long winded answer of what brought me here. I know I said that I was going to keep it simple and short and I did not. 

Adar: I mean, I’m just ready to ask KDUR to give us a 24-hour telethon for this. There’s a lot to say. 

Jen: [Laughing] 

Adar: So speaking of radicals not understanding disability justice or being outright ableist, I mentioned before we hit record that I’m living in an area where on the one hand, there are Native lands all around, and there are some devastating impacts of covid that people have faced on native lands, not due to lack of protocols and precautions, but because of other disparities, and then on the other hand, there’s a lot of folks who are usually white, socio-economically privileged, and people that are involved in things like veganism, herbalism, acupuncture, that are unvaccinated, unmasked, and, so when you encounter people like this, who are democratic or liberal or on the more radical side, what are some of the first things that you say to bring them around? Or is it that. That’s why this course. We need this course. Are there a few bullet points that you can start to try to bring someone’s perspective around?

Jen: This is Jen, so I’m going to give my answer as an Indigenous person and then I would love to hear what mordecai has to say. I’ll start by saying that people like this I’m not necessarily trying to change their minds because to me they’re already so engaged in white supremacist and colonizing behaviors that it’s just not worth it for my own wellbeing to try to engage with them and try to change their minds. I’m not going to do it. I’m not going to waste my valuable and finite energy and time with people like that. 

However, what I do have to say about these kinds of people is that they are ableist, along with racist. I believe in using natural and holistic remedies and cures, but most of these forms of holistic healthcare that these kinds of people you’re discussing use, they’re not their traditional medicines. They’re the medicines of other people. Tumeric for example, great. I use it for inflammation. That comes from Southeast Asia. That’s not a European traditional medicine. You know: elderberry. I take it every day. That’s an Indigenous medicine to these lands. So one, all of these people, the things that they’re practicing–yoga, acupuncture, they’ve all culturally-appropriated those practices from other people. From BIPOC people! [so that’s] first of all. But second, when you have a healthy immune system and you have absolutely no legitimate reason to not get a vaccination, you’re putting people at risk. You’re putting lives like mine and my loved ones at risk. I am on immunosuppressants. I can’t take all vaccinations. Some of them could literally kill me. But somebody else who isn’t on immuno-suppressants, who has a healthy immune system and no health problems, by taking that vaccination you’re not only protecting yourself and everyone around you, you’re protecting lives like mine. And when you tell me that you won’t get that shot, that tells me that you don’t care if I live or die. 

The other issue with this, the anti-vaxxer movement… (t’s not entirely white people, but it’s heavily funded by white people)... you know the other issue is that American Indian and Alaskan Native communities were the hardest hit in the so called US of any other racial or ethnic group. We also, per capita, had the highest rates of vaccinations of any race or ethnicity in this country. We had some of the strongest Covid safety and public health protections on our lands, but at every turn there were white people trying to come on our lands. Whether it was them trying to buy gas or buy goods on our lands, or it was them trying to bring christianity to the lands… (there was a massive covid outbreak that’s been linked to some church activities that were on the Navajo Nation)….you know one of the other areas of issues we’ve had was with white politicians trying to come in and tell our tribes what they can and can’t do to keep our people and and our lands safe. The Tribes of South Dakota experienced that with Governor Kristi Noem. They didn’t ban people from coming through their lands, but they did Covid contact tracing. And Kristi Noem and then later President Trump tried to shut that down. So even on sovereign lands, white people are coming in and keeping us from being able to take care of our wellbeing. 

So when I hear that these anti-vaxxer types want to use, they want to appropriate, they want to steal BIPOC medicines, and then still turn around and give us their illnesses, because they don’t want to get vaccinated, all while doing that while coming onto our lands when we’re telling them that we don’t want them there or that there’s certain things that they need to practice while wearing a mask, that for me is just, well, you’re just a white supremacist, and I am not going to change your mind. All I can do is try to change the systems around us. Now, I would love to hear what Mordecai has to say on this. 

Mordecai: This is Mordecai speaking. I don’t know that I have very much to add Jen, I think that you spoke powerfully addressing all of the key things. I guess I would just amplify the extent to which there is such a normalization of ableist mindsets and eugenicists thinking and policies in the so-called U.S., that that makes a whole anti-vax movement possible, where people can just say that “well, I’m just going to take care of myself through like herbs,” that are, exactly as Jen articulated, culturally appropriated by most people. To think: “Well, l I’m going to protect myself so that’s sufficient,” as opposed to understanding that it is eugenicist in nature to say that as an expression of personal freedom you are going to reject something that could benefit the collective, and that that be a legitimate decision to make, or even a legitimate way to think about things. It’s very, very painful. And the amount of, for black and indigenous and Latinx and additional people of color who are disabled, chronically sick or chronically-ill who are facing simultaneous ableism and white supremacy as a consequence of these movements, and people who are behaving this way, which has been massive, that the U.S. vaccination rates are really low compared to other countries, and that’s in the context of global vaccine apartheid even. 

So it’s just, it’s really infuriating, and it’s been life-threatening for people. And it sounds like all of us,because of the nature of our disabilities have experienced, and in the communities that we love and people we love have just experienced the concrete impacts of these movements and this type of thinking, are experiencing so much more confinement and isolation than otherwise would be necessary. So our freedom and our autonomy doesn’t matter at all because this type of thinking renders disabled people as disposable, and everyone else to have some sort of right to freedom that for some reason we don’t deserve because of essentially us being disabled. And those are the other types of mindsets that are really important to expose in this type of context. Jen really spoke to that also. I’m really echoing what Jen just shared. 

Jen: There’s also something else I wanted to throw in. So while I’m clearly very pro-vaccination, native people like I said we’ve had the highest rates of covid vaccinations per capita of any other racial or ethnic group, but our life expectancy between 2019 and 2021 dropped 6.6 years because covid killed so many of our people. That’s the other issue. When people don’t vaccinate who can get vaccinated, they’re putting other people who don’t have healthcare resources, who may not have clean running water, who are already suffering from genocide, they’re just furthering that genocide, they’re just fueling it. And that’s also part of the medical industrial complex. You know I feel like in a capitalist colonialist system the system is going to eat us up and make money off us in any way that it can. For some people that’s using them as labor, and then for others, some of us like me, who are chronically ill our entire lives, it is using us as patients. The system is just using us up and spitting us out and it doesn’t care who lives or dies. But something that has also been frustrating to me that I think is really important about what Mordecai said about the ableist mindset, is that really once everyone really once many people had access to the vaccine I noticed that at a lot of native community events people stopped masking, and that’s been very upsetting and very disappointing. i’ve seen disability leaders in this country going to events indoors and not masking. So I really feel like as an immunocompromised person in this country I have just been left behind to die. But I have made it this far despite being on immunosuppressants without getting covid. So clearly, I know something and I’m doing something right. If those out there who are able bodied and have healthy immune systems would just listen to people like me no one would have to be living in the extremes, no one would have to be living in the extremes like Mordecai and I and others are having to live in, going without healthcare, or without employment, or groceries, or whatever. If people would just think beyond their own selfish selves, and their own needs and wants, things would not have to have been this dire. And they would not still be this dire. Because despite what our government might be saying, covid is not over, people are still getting sick, people are still going without care. It’s just that it’s people like me and other oppressed and other multiply marginalized people that our society just doesn’t care about. 

Adar: And I have an autoimmune condition, I don’t know what is the reasons you take immunosuppressants…Mordecai you mentioned asthma…so many of the illnesses that people are suffering [from] that can cause disability are environmental in their sources. Environmental pollution. Yeah, which just gets into the importance of this climate focused training. Thank you so much for coming on the show. I would love to have you back again soon.

Mordecai: We would love to explore that, and before we sign off we just wanted to let the listeners know once again we would love for you to join us at health justice commons understanding and transforming the medical industrial complex climate justice edition. It starts March 2nd, but we practice crip time, we call it, so even if you are a little late enrolling, we’d still love for you to join us. We also have guest speakers from Shelterwood Collective on Pomo Land It’s a beautiful Indigenous and Black-led land rematriation project, so there’s a lot of solutions to the oppression of the medical industrial complex that we introduce to our communities, and if you want to have more conversations like the one that we had here, and incubate transformative solutions for our future, please join us, we’d love to have you.

Show outro: You have been listening to “JustUs” on KDUR 91.9 and 93.9 FM, also streaming online at KDUR.org a show about mutual aid, public health, and community based solutions, broadcasting from so-called Durango, CO, and recorded throughout on the ancestral lands of the Nuuichu, Diné, Apache, Tiwa, and also the other original pueblo people whose homelands are located in current day New Mexico.

[a portion of ‘Water Get No Enemy’ by Fela Kuti plays in the background]

JustUs is a show about public health, mutual aid, and community-based solutions in the rural Southwest, which airs on KDUR Fort Lewis College Community Radio in so-called Durango, Colorado and will soon be broadcasted on KNCE True Taos Radio in Taos, New Mexico. Both are free-form, volunteer run, community radio stations. The show is also released digitally in podcast form. JustUs is recorded, edited, and produced by Adar, a neuroqueer, Jewish, disabled white femme whose work and life in the Four Corners dates back 15 years, and currently involves (in addition to producing this show!) somatic counseling for grief and chronic illness, teaching as an adjunct professor in the public health department of Fort Lewis College, and supporting the development of KSUT Tribal Radio’s first ever Tribal Water Media Fellowship. 

**A note from Adar: I have never produced a transcript for JustUs before. Recording this interview on Health Justice Commons’ series has been the perfect opportunity for me to do so for the first time. If folx are have benefitted from having access to this transcript, My resources and time are limited, but I would love to hear from you! I would love to get a sense of who is listening, and how you are accessing my content, so that I can continue to direct efforts to making the show accessible to those of you who want more content like this!

Love and Death, part 1

Valentine’s Day was just a couple of days ago. A few days later I am still nursing a Valentine’s-induced emotional hangover. If the love in your life looks different in any way than the normative ideal that is so often presented to us in Hallmark cards and advertisements everywhere, then February 14th can be a hard day to get through. The thing is, my mom and both of her parents passed away on dates leading up to Valentine’s Day—February 11, February 12, and February 14th–all in different years; so when I do celebrate what some are now calling “Love Day”, I celebrate by grieving. 

And what characteristics does that ideal image of love possess? That corny picture that we cannot stand watching, but we cannot turn away from, either. Beauty? Of course. Yes. Sex appeal? A must. A tall blonde with nice curves who can run in heels? Usually. But wait, there is more to this cruel picture (cruel because for most of us, it isn’t realistic). Societally most of our visions of romance are anchored not to health and youth. 

Chronic illness was never supposed to be part of any love story. Neither was death, not really. Even in the phrase “till death do us part,” death is not part of the narrative, actually. It is the inconvenient end, just like the last call on Saturday night at the club around the corner.. No one wants to acknowledge that it is going to happen. Until a few minutes before closing everyone is still dancing, flirting, and ordering drinks, Time does not exist on the dance floor. Tomorrow feels far away…until the second that the fluorescent lights come on. Then it becomes impossible to ignore the truth. It’s 2AM. Tomorrow has already come. In Shakespeare plays and Broadway musicals, and even wedding ceremonies themselves, we watch the part where people kiss, fall in love, and make a vow to be together. When the credits roll, we leave the theater. Sometimes, when indulging romantic fantasies, we pepper in scenes of sitting in side-by-side rocking chairs and having grandchildren, but we do not fast forward to the end of the reel. The picture perfect love story will not accommodate the unsexy realities of aging and illness.

“We get no choice. If we love, we grieve.”  - Thomas Lynch

I am writing for those of you who are serving in the role of caregiver, and those of you who lost a partner gradually to an illness. Also to those of you whose bodies changed in ways that have affected your sexual relationships, your reproductive viability, or your ability to do the activities you enjoy with the people that you love; and those of you who are grieving a loved one who has left this world. You may not find any romance on television that looks like your love story does right now, but it does not mean that your story is any less beautiful. You deserve to be recognized and honored for the love that you’ve given, and shared. Your love is worthy of celebration. 

Maybe cancer or some other chronic illness entered center stage, ushering in a new act that is ugly, messy, and hard. If the scene right now includes a catheter, a PICC line, adult diapers, or all of the above, today I want to tell you that yours is a love supreme.  Even if the scene includes bouts of hysteria, hospital food, piles of pill bottles, uncontrollable tears. Even if friends are no longer coming around to visit you because your situation is too intense for them, or too awkward, or too boring. And even if you are barely ever alone because of the nursing assistants and the family and the doctors, or if you’re alone way too often. Yours is the perfect love story. I want to read the storybook about your romance.

Summer Series at-home: Intuition and Healing

I wrote this meandering blog post on the coronavirus to explain how & why I decided to create the Intuition and Healing at-home Summer Series that I will launch on June 2nd.  I am turning 30 in June, and this offering is my way of celebrating. If you would like to skip over my musings and skip straight to the course registration, visit my page’s store. Throughout the summer course you will have plenty of opportunity to hear from me personally about what 2020 has been like for me, and how I am using some of my intuitive practices to cope.

(There are some opportunities to pay in installments, and also to save by purchasing only the curriculum without the live sessions, so please do not be discouraged if financially you are going through a hard time. I also want to say that I am a firm believer that doing your work on your own can be noble and important, and that regardless of how much $$ you have or don’t have, the right teachers and guides will come to you.) Now, about those musings--here we go.

I went into 2020 fired up with plans and ambition. 2020 would be the year that I turned 30, and it would be the year that I finished a graduate program and launched myself forward into something new. I was so chocked full of plans that five weeks into the year I found myself exhausted and miserable. I wanted it to be the year that I saved up enough for a down payment on a house, and the year that I met a marriageable partner, and the year that my professional career went from “eh?” to wildly successful. 

On March 1st I took a trip to Mexico with a dear friend to celebrate my graduation, vowing to chill out and to find joy in the everyday. While I was on the beach at Puerto Angel I worked on the draft of a memoir, and I emailed friends about my plans to celebrate my 30th birthday by hosting a three-day certification course for Reiki levels 1 & 2. On March 10th I flew back into the U.S. with a great suntan, a big relaxed smile on my face, and in my suitcase a few bottles of mezcal. Three months into the year I finally felt equipped to live out my best 2020. 

Then--you know what I am about to say, right?--I came back to the U.S. through a layover in the Houston airport where I watched masses of masked people rush towards their planes nervously, and then drove back to a Colorado where restaurants, coffee shops, and schools were closing down by the day. I hosted a book club at my house the following evening on March 11th, but felt nervous about it. A few days later the government of Mexico closed its border to the U.S, and I started to realize that all bets for 2020 were off.

Just as happened to so many others, I saw all of my plans and visions for 2020 evaporate. Yoga classes? Over. Reiki training? Nope. Spain trip with my brother? Definitely no. Dating? Probably not. I am privileged enough to have a stable job, one that I love, and one that can easily be done from home--but my work, which involves working with college students, and planning large community events, has taken a completely different course. I take immunosuppressant medications for a chronic health condition, placing me within a category of people whose risk factor doctors and researchers are at a loss about it. As the medical community scrambles to build a body of evidence on coronavirus outcomes, we sit at home, confused, feeling healthy(ish), but worried. Some of us are afraid to take our immunosuppressant medications, or have stopped doing so already, either out of fear, or because of added financial stress.

“These strange times.” Have you noticed how many of us are using this phrase right now, as if some kind of agreement has been made that “strange times” is the most accurate term to describe the cascading, ongoing effects of the COVID-19 pandemic as they bleed into every aspect of our lives, changing us maybe forever? “These strange times” does make sense to describe what we are collectively going through. Coronavirus came upon us without much warning, and the length of its centerstage moment has proven itself to be indeterminate in measure. We are isolating, but with a heightened sense of our interconnectedness across the globe. We may have trouble imagining what tomorrow or next week will look like, and yet find ourselves lost in visions (or nightmares!) about the future that our human race is headed towards. Most of us cannot help but keep referring to the time when “life will return to some kind of normal,” but many of us also find ourselves predicting that there will “never be a return to normal,” or that “if normal was the way to describe how we were living before, then we don’t ever want normal back”. 

It seems wrong for us to admit that we enjoy anything about this time while we know that so many others are suffering, but that does not change the fact that, for many of us, it is the truth that in the pandemic we have found comfort, meaning, and even beauty. We do not want to go back to rushing through our days caffeinated, hurried, and half-awake. We do not want to go back to an economy fed on blood sacrifice, rotting from its copper pillars, and yet stubbornly rooted in the axiom of endless, exponential growth. We do not want to go back to no maternity leave and no sick leave and, while we clock-in and clock-out, entrusting our children to be raised, and taught, and loved by other people. We do not want to go back to no rest, little play, and to joy that only occurs on borrowed time. Let’s be honest: the dystopian narratives about zombie apocalypses, pandemics, and humans evolving into psychic werewolves that have overrun popular media have become fantasies for a lot of us, no matter how nightmarish they are. I read more sci-fi now than ever because speculative fiction feels urgently relevant. Some of us have gotten to the end of our rope and would take any ticket out of “normal”.

As someone who lives with a chronic illness, “these strange times” have also felt a lot to me like deja vu. I am used to always heading towards some date on the horizon of my life when I hope that my symptoms will be easier to manage. I am also used to balancing that hope with a terrible, deeper fear that my disease will spiral out of control and ruin my life. I am used to having to take every-day precautions at best are inconveniences, and at worst annoy the hell out of me. Most of all what is familiar to me is this sense of my body lashing back at me and putting me in my place whenever anything gets out of balance. Losing out on a good night’s sleep, or neglecting to drink water, or eating a piece of sugary birthday cake, can be enough to give me chills, aches, fatigue, and a mild fever for days. I have a growing list of things that I try to remember not to do (drink beer even if it’s just one; assume that other people understand what chronic pain feels like; push past my pain limit during exercise until I end up having to sleep for days), and a also a growing list of things that I have to do (meditate; take magnesium; cry when I’m grieving; dedicate time to relaxing at home). My body is a teacher; and the method of instruction, my illness. As the years go on my body seems to have become stricter with me. I am still learning. What exactly is the lesson??? Sometimes it feels like the lesson is, well, everything.

I learn to be humble. I learn to not crave more than I need. I practice feeling pain without blocking it out, and without insisting on the existence of a future world in which my pain will no longer exist. I stop imagining that my life will someday get easier. I pay attention to other people’s suffering instead of letting it scare or bewilder me. I stop coming up with fixes for other pain because I know what it feels like to accept that there may never be an end, or an answer. I listen to my body every day. I learn over and over again to find my meaning and my stamina by being there for others, but without giving so much that I burn my own candle out. I am not saying that I deserve my illness, or that it exists because I need to learn these things, but I cannot deny the truth that, through all my pain and grief, I am learning.

When I am overwhelmed with fear about my degenerative illness one of the tactics that I use to re-center is to imagine myself looking back upon my life from the perspective of me as the grandmother that I might someday be. I would be proud of myself for enduring what I’ve endured, and even more so if I got through it and kept loving, kept finding joy. I would evaluate my life based not on how long I had managed to stay fit, active, and beautiful, but on the community that I had helped to build, on what I had given to others, and on how much happiness I had granted myself. Looking to the realities of what oppressed peoples around the globe are going through, I find myself starting to see that even daring to hope for something like marriage and children, or something like safety, leisure, and happiness—is an enormous privilege.

So I am used to living with uncertainty. Sometimes I imagine a future for myself in which I am hiking and rock climbing until my 60’s, living out my dreams, and enjoying all the best that life has to offer. Other times I imagine being confined to a bed or a wheelchair struggling with that ‘list of things NOT-to-do to avoid flare-ups’ having taken away from me almost everything.

Who knows what is going to happen next? We can look to scientists for projections, but none of us see the future--even when models predict future outcomes that we are inclined to believe, we have so much trouble imagining what it could be like to live those outcomes out. 

Here is what I was not used to about living through a pandemic: spending so much time at home and ENJOYING it. For years, ever since I was diagnosed with my condition, (and within a few months of that was treated for thyroid cancer,) I hated spending time at home. Sure, while I was recovering from surgery and radiation, I spent a lot of time at home. That was when I developed my yoga practice, and I took up singing again, and I taught myself how to cook. For a while, in the name of healing my body, I gave up everything and anything that might be holding me back. The list of do-nots included sugar, men, bread, alcohol, hiking, running, meat, eggs, chocolate, chili peppers, New York City, and late nights dancing. I let it all go without a second thought. That was when I had my first realization of how important it would be for me to accept the limitations of my illness--if all I did was rage, and cry, and resist, I would make myself sick, spend my life miserable, and burn myself into the ground--but, hey, there are some things we have to learn over, over, and over again. 

I spent most of my 20’s terrified of being at home or relaxing. Slowing down reminded me of being sick. I often ignored what my body was trying to teach me for as long as I could, waiting for the symptoms of illness to literally pull me to a halt, instead of being kind enough to listen. I went into 2020 burning and raging, obsessed with personal goals and work projects, ready to hit the gym & search for love & work for long hours. It turns out that I have relished these hours at home more than anything, especially those hours when I was doing nothing or very little, even when I knew I was losing income. I became unafraid of missing out on experiences, or of wasting time. I relaxed enough to enjoy dinner with my roommates, and to have a slow chat over tea with them in the morning. I stopped waiting for a date, or an invitation for one, to give me the permission to feel desired and beautiful, and I stopped waiting for the perfect job to come around to assign me the perfect project of dreams: I just did my f$%#ing work, everyday; the work that makes my heart shine.

I am not as upset anymore about being sick because if the whole world is sick right now, then I am just part of the club. We are all in this together. I am also less afraid of losing function and becoming sicker. I want to succumb to the wave of mysterious, slow-to-learn, body wisdom that crashes and sprays and rocks me, and to go wherever that wave is pulling me, no matter how deep I have to go. I think that we are all part of that wave—that my suffering is connecting to yours, and both of ours to a larger shift that we are ALL experiencing on this earth.

Is the pandemic here to teach us lessons, and to kick us back into something that looks like balance with ourselves, and with the earth?

I do not feel comfortable saying that, but one thing I do assert is that ALL of our feelings during and about the pandemic are valid—the grief, the anger, the fear, the hope, the relief, the dread, the confusion, and the joy—and that, if we take the time to examine all the tangled messes that we find ourselves in, and all the driftwood and the sea glass and the creatures turning up (beauties and truths rediscovered. or unknown to us before), then I think we can use this time as an opportunity to drop deeper into wisdom than we would have imagined we were ready for.

Here I am, inching towards the halfway point of 2020, still at home, and with no regrets about how I am going to mark turning 30. The last few months have eliminated a lot of clutter and noise from my life, and have given me an opportunity to rest more deeply into what feels like my true self. If I spend the day with a couple of cherished friends outside in the wilderness, or on a trail (trails are open here, thanks to respect for social distancing), then I will have everything I want. As for Reiki training, it is possible that I could have pushed myself to offer a three-day online certification course for Reiki Levels 1 and 2, but I am happy that I decided not to do that because what I am giving you instead feels more realistic and sustainable for me, and it also feels more real.

I will be sharing a lot with you that is informed by the full breadth of my training in various disciplines and modalities over the last 10 years, as well as plenty that comes from my lived experience creating a life of joy and meaning while I work through illness, chronic pain, trauma, and grief.

I love the fact that this will be available to anyone, anywhere, which might be an opportunity to connect with some faraway friends, and some new connections. Thanks for reading! Check out the information on my Intuition and Healing at-home Summer Series. 

My Wellness Practices for the Holiday Season

I usually dread the coming of winter because I am much more of a “warm” person. I like to be out until past 8:00PM with my dog on a trailhead. I like to feel the sun bake into my bones.  When this time of year comes I remember how nourishing that the early darkness is, and how much, despite my ambivalence towards Christmas, that I love falling into a rhythm at the end of each year that is entirely shaped by giving what I have to share with others, celebrating opportunities for togetherness, and taking care of myself. Here are the things that I am doing as 2018 to nourish myself.

1. Tying up loose ends

   My graduate school semester ends this week. Even before my final projects were in a calm set over me. Juggling work, school, and teaching I get into trenches of hectic over-productivity that I cannot imagine ever being out of. Over the horizon of this, and with darkness setting in so early, I take joy in knowing that I will have time to circle back to all that I have rushed through. Just in the last couple of days I have organized my underwear drawer, paid some of my bills, and organized my upcoming schedule. I look forward to writing my holiday cards, giving myself a pedicure, visiting with friends I miss, and -YES- even servicing my vehicle and going to the DMV to renew my license, since these are all tasks that I usually rush through or skip.

2. “Divesting” from things that I don’t really care about

   Having extra time feels wonderful. As a busy woman an important form of self care for me is to make extra time. My horoscope from Chani Nicholas is telling me to “commit to experiencing the abundance of a good fit”. In other words instead of living in the trenches of over productivity, how can I stop overextending myself and create a life that actually works for me, not the me in overdrive? In service of this ongoing endeavor before I buy myself any gifts this year I am asking myself: “what can I give away, let go of, and give up on?” I will be switching up my schedule of yoga classes to make more room for down time. I will be shutting down my Facebook permanently and finding other ways to promote my classes and stay in touch with family & friends…. or maybe just trusting that the people who need my services will find me, and that the people who want to be in my life are holding me in their thoughts (without a stream of constant communication on the Internet reassuring me that it is so). If you follow my page on Facebook please consider saving my website info somewhere, or joining my email list to stay in touch.

3. Gifting consciously

   I mentioned my ambivalence towards Christmas. Many of us have a love/hate relationship towards traditions of gift giving. I do not have to spell it out for you. The sense of obligation to gift, the financial strain of it and the material waste that unwanted and/or unneeded gifts create… these are some of my qualms with holiday gifts. Against this resistance to go out and buy all my friends and loved ones sweaters, candles, etc., some stronger feelings, love and gratitude, come in. The end of the year is my favorite time to express my thanks to everyone I know for everything that they do. Without them I truly would not be able to function, and I would not be as happy. This goes for everyone in my web of connections from my immediate family, to the cousins I never see, from my closest girlfriends to my boss and colleagues, from my distant pen pals to all of the yoga, dance, and climbing buddies that I have nearby. I love taking the opportunity to express my gratitude to all of these people. I do not do it enough. So around the holiday season I give, but I do it consciously. Those in my web of connections know to expect baked goods and cards, not Yankee Candles or cheap jewelry or gift cards. This year I am making essential oil spritzers to give away, and I purchased cards from UNICEF that express a universe message of peace, with proceeds going towards their worldwide efforts to improve wellbeing for children. What I am most excited about is that I am gifting Reiki level one training to some of my colleagues and friends who are on the front lines as medical professionals and therapists trying to help people every day (including educators!), AND I am hosting a dance party for my friends.

4. Slowing down AND BEING OKAY WITH IT

   Everyone is going to start talking about doing cleanses and about setting New Year’s resolutions. Can we talk about giving up on a daily fitness routine for a while and feeling awesome about it? Can we talk about drinking more wine, and eating more cake than usual, and loving it? Can we talk about getting softer and rounder and being absolutely okay with it??? I ate a ton of incredible, lovingly prepared food with my boyfriend’s family at Thanksgiving. I have some parties to attend in the next few weeks, and I would like to bake some treats for my friends like this recipe from the Violet Bakery Cookbook for Rye Brownies that I have been holding onto for over a year because it isn’t gluten-free and it will be garbage without lots of butter. My inner voice is saying: “Breathe. Whole wheat flour won’t kill you. You will always be beautiful. You deserve to craft your own happiness through the seasons with as much love and care as if happiness was like micro-batches of craft beer, always strong, always indulgent, always of a moment and of a time….”

Thank you for reading, and Happy Holidays!

Fill Your Cup: A Community of Support for those with Autoimmune Conditions

I have begun hosting a monthly support group for those with autoimmune conditions in Durango and surrounding areas. Clients of mine struggle with health issues, pain, or limited mobility, and I myself go through my own challenges with Rheumatoid Arthritis. This support group is a place to meet and discuss wellness, share knowledge, and simply to build a community of understanding and support. The group is free of charge, and meets the last Wednesday of every month at The Living Tree Live Foods Salad Bar , which features a menu of freshly fermented foods for gut health. See the link to the Facebook event here!

Many of us who live with an autoimmune condition know that it can be challenging for others around us to truly understand what we go through. Many of us look healthy while experiencing invisible symptoms that come and go. Depending upon the condition, and just on the day of the week, these symptoms can either be quite debilitating or can fade to a murmur for months at a time. Diet, lifestyle, mindfulness, and emotional wellbeing all play a HUGE role, and many of us have experienced others disbelieving us about the importance of this, or having our pain minimized by others because by looking at us, it just doesn't seem like we should be in pain. 

And by gosh, it is true, we shouldn't be living in pain! Personally, even when I am feeling well I am prone to struggle with a lack of trust in my body's resilience, a lack of trust in my body's strength, and let's be honest - a lack of trust that everything in life will not fall out from under me, that no matter what life brings I will be okay. When life brought me the diagnosis of a chronic disease the world did fall out from under me in a very real way. Being open about what this feels like, being vocal about what it took and still takes to piece that ground back together under me, and finding other strong individuals facing similar challenges with light and bravery... consider that my MEDICINE.  

Another thing that healthy individuals may not understand is that, when it comes to the subject of illness, our conversations don't always have to center around struggle, sadness, and pain. Sometimes we need to be able to celebrate our victories and joys, with recognition from others around us that we're doing AWESOME. Yesterday, for example, I got amazing results back on my blood work at the Rheumatologist, and reported pain scores of 0 since as far back as I can remember. Sharing this news within a group of people who can all understand how much of a success that is means a great deal. Continuing on a path of health and happiness takes blood, sweat, grit, tears, faith, heart, hussle, and so much more. It takes a lot. Let's build each other up! 

If you have a diagnosis of an autoimmune condition, or know someone who does, you are welcome to attend our next meeting. 

**This group cannot serve as a substitute for therapy or any kind of mental health treatment. The primary purpose is for members to form community, and to share knowledge & experiences. If you are seeking mental health treatment, Debbie Higgs Yoga and Reiki is happy to provide you with information on how to seek help**