Mysterious Illness and Melting Ice

Ice slowing melting & refreezing in our pond (March 22, 2022)

I recently read Sarah Ramey’s memoir, The Lady’s Handbook for Her Mysterious Illness. Published just last year, it is described this way:

“In her harrowing, darkly funny, and unforgettable memoir, Sarah Ramey recounts the decade-long saga of how a seemingly minor illness in her senior year of college turned into a prolonged and elusive condition that destroyed her health but that doctors couldn’t diagnose or treat. Worse, as they failed to cure her, they hinted that her devastating symptoms were psychological. …Ramey’s pursuit of a diagnosis and cure for her own mysterious illness becomes a page-turning medical mystery that reveals a new understanding of today’s chronic illnesses as ecological in nature, driven by modern changes to the basic foundations of health, from the quality of our sleep, diet, and social connections to the state of our microbiomes.”

Book Jacket Cover

I haven’t experienced the horrifying stories she recounts with medical personnel, but I know others who have. I think it helped that I was usually drawn to alternative practitioners, though Sarah had her own horror stories with alternative practitioners. She finally found help with practitioners of Functional Medicine, and my own primary care nurse practitioner is aligned with that field. For that I am grateful.

I identified with the mysterious nature of auto-immune chronic conditions–when I reflected on it, I realized that they have been a part of my life for many years–most recently, Hashimoto’s thyroid disease, SIBO, adrenal fatigue, and borderline diabetes, but earlier in my life there was endometriosis, polycystic ovary syndrome, and gradually developing multiple chemical sensitivities, and multiple food sensitivities. For most of my life, I managed to work and keep my balance, but it became more and more difficult. Finally, when I turned 65, and could access Social Security and Medicare, I retired from my work as a full-time minister.

I wondered at the time if being released from the stress of full-time work might bring me relief from the illnesses, but that was not to be the case. Instead, I was better able to manage living with the illnesses. But it is a delicate balance. If I eat well (for me that means no refined sugar, no gluten, low carb, lots of vegetables, and meat, while avoiding the list of specific foods that give me problems), if I rest when I am weary (which is spending some variable part of every day lying on the couch), if I take certain natural supplements (for example, I take Berberine, which has been shown to be as effective as Metformin for helping blood sugar balance), and if I don’t overdo it anywhere, well then, I have some energy to do things I love, to write, to garden a bit, to learn new things, even the miracle of building our little pond last year.

Sometimes, I can forget that I have these illnesses. Some days I wake in the morning rested and glad to greet a new day. I might have several hours to work on projects. I tend to get more weary and achy as the day goes by. And during these two years so far of COVID, I have been glad for the many opportunities that the world on Zoom provided. But then, something happens that upsets the balance, and I am sunk into a lower level of functioning, just barely able to cook my meals and take care of the basics. Most recently, I think that my body might have reacted badly to my second Shingrix vaccine. The last four weeks have been mostly couch weeks: reading books and watching British mysteries on Roku. I hope that I am emerging from that now. It is not easy to know what upsets the balance–all I can do is respond to it.

Because I am always asking questions about meaning, I appreciated the connection that Sarah Ramey made between our chronically ill bodies, and the larger ecology of the earth. I think about that too. I wonder if my own body is mirroring the afflictions of the earth I love, is somehow sensitive to the larger web–global warming, the prevalence of forever poisons, the loss of communal connections, the ecological balance which human beings have undermined. If that is the case, can I love my body as I love the earth? Can I grant her that self-care that has been neglected for too long?

One aspect that Sarah Ramey sees as critical is our need for human connection. I was reflecting on how for much of my life I made connection through activism, through shared work. I still feel the impulse to act for justice, in small ways, but there are less opportunities now for the connection that used to be a part of it. I have also felt more isolated since retiring, and, of course, since COVID. Maybe I need to learn something new–to nurture connection that is not at all about work or social justice, but about something more elementary. Can I be cherished, not for what I do, but for my being? Can I cherish others in this way? Can I also cherish myself in just this way? Perhaps it will require a kind of spring melting of some other kind of hidden ice. May it be so.

Hard to see, but there is a thin clear layer of ice on the surface of the pond this morning, but more of the winter ice is melting each day. March 26, 2022

The Mystery Seed

On March 14th, at 1 p.m. Queer Spirit will broadcast an interview with me, done by Revs. Marvin Ellison and Tamara Torres McGovern. Queer Spirit is a regular feature of OUT Cast, a forum for LGBTQ+ issues broadcast on community radio every Monday. WMPG 90.9 FM from 1:00 – 1:30 p.m. (Livestream: WMPG.org) One of the questions they asked: “What do you think has been your generation’s unique struggle with sexuality and spiritualty – and what would you say is your generation’s contribution to these matters?” I thought about what I had written in my book, Finding Our Way Home, in a chapter called “The Mystery Seed.” I want to share an excerpt with you today.

Bean seeds

Do you remember the fairy tale of Jack and the Beanstalk? When he and his mother are in desperate straits, Jack trades their cow for some magical bean seeds. The bean seeds grow overnight into a vine that reaches up to the sky. He climbs the vine and encounters an evil giant, who eats human beings, but Jack is able to escape with a magical hen that lays golden eggs, and a golden harp that plays by itself. He learns from a fairy that the giant’s castle is actually his very own—he is really a prince whose father was killed by the giant. In the end, he kills the giant, and recovers his hidden inheritance.

So what does this have to do with us? The bean seeds enable Jack to connect with who he truly is, and with a larger reality beyond the small cabin he shares with his mother. Within each one of us is something like those magical bean seeds. We are so much more than we can imagine. We might say inside each of us is a Mystery seed, a seed of what we might become. This Mystery seed is our potential to connect with the larger Mystery of which we are a part; it is the Divine within us that connects to the Divine beyond us, it is the fractal pattern of life and love and creativity. This seed is not only in some of us, not only in fairy tales or kings or saints, but in every one of us.

What evidence do I have for this seed of divinity within each human being? How have I personally experienced this might be so? Ironically, it has been illuminated when I faced situations where people were treated as if they had no dignity or value at all. But something within and between people transpired to bring forth a light that could not be extinguished.

When I went to college, one of my best friends slowly revealed to a few of us that he was homosexual. This was a great torment for him and for all of us who loved him, because we were very devoted Catholics. According to Catholic teaching, homosexuality was against the laws of nature. Tom would try hard to live celibately, and then crash, and go out and “get debauched.” He was depressed and often despaired of his life. I felt a painful contradiction in all of this—I knew he was a deeply spiritual person, so why should he suffer in this way? But I didn’t have an answer at that time.

Before I met Tom, in the reality of my youth, it was as if gay people did not exist. When I was growing up, during the 1950s and 60s, I never even heard the word lesbian, and gay only meant happy. I never saw gay people on TV, read about them in a book or newspaper, or learned about them in school. As a girl in a Catholic family there were two possibilities for my life path: I could become a wife and mother, or I could become a nun. I never even imagined the possibility of lesbian.

Tom’s dilemma introduced to me a whole category of people who were considered unworthy of sacredness. Gay people were not supposed to exist. And if they did exist, they were identified as unnatural, disordered, a mistake, a problem. African American lesbian poet Audre Lorde writes, “We were never meant to survive.”[i]

At that time it never even occurred to me I might have something in common with that group of people. I didn’t come out as a lesbian until years later, at the age of thirty-one, after a five-year process of struggle and transformation… Gays and lesbians have often been excluded or disparaged even by those who are closest to us. After I came out, one of my sisters refused to let me stay in her home because she didn’t want her children to know about gay people. I received a letter from another sister. She wrote, “I pray for you night after night… Homosexuality is wrong! And as your sister I don’t want to lose you to the devil.” Her words were those many of us have heard from parents or siblings, or from the institutions of our society.

How much guilt, despair, and shame have gay people carried in our hearts because we were not welcome in the reality defined by our culture and religion? Because we could not see the sacredness within? How many gay people have killed themselves in the pain of that reality? How many gay people have been killed, through the violence and hate of a society that has refused to include us in their definition of reality?

But so much has changed. Now it is hard to imagine I didn’t know about the existence of lesbians or gay men. Now gay people are in prime-time television. There are supportive high school groups for Gay, Lesbian, Bisexual, Transgender, Questioning, and Straight youth. My friend Tom eventually was able to embrace his sexuality, and share his life with a long-time partner. In 2004, Massachusetts became the first state in the U.S. to allow same sex couples to be legally married, and in the years since, marriage has been won throughout the whole country.

Even language became transformed. Words like lesbian, or queer—once painful putdowns—were reclaimed as words of honor. I remember we young activists marching and shouting, “We’re here, we’re queer, get used to it.”

So much has changed. For me, it seems like a miracle—in fact, two miracles. First, I still can be amazed I exist as a lesbian at all. How did I cross over into a whole new reality? It is as fantastical as Jack climbing a bean stalk into a castle in the sky. Second, it is remarkable that we who are queer can celebrate being queer. How did we go from being outcasts, to celebrating and believing in ourselves? How did we go from being outcasts, to demanding that reality make a place for us? To celebrate ourselves as queer we often have had to risk every other valuable thing in our lives. We’ve risked family, friends, jobs, safety. Yet this thing which was considered a problem became the “pearl of great price,”[ii] as the gospel says. This heavy burden became the hen that laid golden eggs. And it has been incredible to see!

What happens within people that they can claim the power to celebrate themselves? …What happens inside people when they refuse the rejection of society, and claim the right to name themselves valuable. When people who have been told all their lives “You are no good,” find within themselves a different voice that says, “You are sacred.” To me, this is powerful evidence of the divinity within us. And this is the premise of the work of those of us who call ourselves Liberation Theologians: the Divine is revealed in the struggle of oppressed people for liberation.[iii] It is the Mystery seed within us growing like a vine into the sky.

…That is what happened for me, too. Within a community of women, I experienced a new reality coming into being. With women who were celebrating lesbian existence, I encountered the Divine in a new way. Sometimes we called it the Goddess. Sometimes we had no name to describe it. But we felt a sacred and holy power when we seized the courage to embrace the body of another woman. Everything shifted. It no longer mattered whether we were welcome at the table of the society that excluded us. We were in a new reality and could no longer be denied.

Me and Rev. Marvin Ellison, back in 2009, as co-leaders of the Religious Coalition for the Freedom to Marry, getting ready for the public hearing.

[i] Audre Lorde, “A Litany for Survival,” The Black Unicorn: Poems (New York:  W. W. Norton, 1978), 31.

[ii] Matthew 13:45-46.

[iii] Liberation Theology was first articulated in 1971 by the Catholic Peruvian priest Gustavo Gutierrez, in his book, A Theology of Liberation: History, Politics, Salvation (1971 in Spanish, English edition Maryknoll, NY: Orbis Books, 1973).

Learning Passamaquoddy as a Non-Native

Photo: Snow covered tree at dawn.

What a beautiful dawn the other day, all the branches coated with light snowy adornment! I’ve been feeling grateful these days. In particular, I’ve been thinking about how lucky I have been to study the Passamaquoddy language with Roger Paul during the last 3 1/2 years. I recently saw an article published a few years ago, by Taté Walker, “3 Questions to Ask Yourself Before Learning an Indigenous Language as a Non-Native.” It got me reflecting about the questions, some of which I had already considered when I began. #1 Why am I learning this language? #2 How will I center tribal perspectives as I learn this language? #3 How will I handle criticism from Indigenous people? Today, I also have a fourth question which I will explore.

I looked back to my earlier posts to remember my thoughts about why I was learning this language. I had asked permission from the teacher, and also from my Wabanaki friend who was going to take the class, and both had been very welcoming. Roger has talked about how his elders had decided it was time to share the language with others beyond the community. On a very practical level, it was hoped that by increasing the number of registrations, the class was more likely to be offered at USM, so more available to Wabanaki students who wanted to learn.

On a deeper level, I wrote that it was a way to begin to decolonize my mind, “I want to think differently”–Nkoti piluwitahas. I also had the thought that, ideally, any of us who came to live in Wabanaki territory should learn the original language of this land, as respectful visitors. Also, years ago, an Indigenous woman had said, “If you really want to understand our spirituality, you must learn our language.” It stayed in my mind though I can’t remember now who it was who said it. (This was during the time I was working on the issue of cultural appropriation by white people of Indigenous spiritualities.)

Today, thinking about it again, I know I had the privilege of retiring from work right at the time the class began, and there was a program for seniors to enroll in university classes for free. Everything came together so easily. My heart led me into it and the door opened. I think perhaps, too, though I didn’t realize it at the time, it was a way to connect to my own Innu ancestors.

During the process of taking these classes, I have learned so much about the perspectives and history of Wabanaki people. I have learned how few people are now fluent in the language, because of forced assimilation, and because of the terror of the boarding schools and day schools, where children were punished for speaking their language. I have learned that for me to learn the language is a privilege that many Wabanaki people do not have, if only because they are busy trying to survive in the English-speaking world. I understand that if I were to speak the language in most contexts, it might be a painful trigger for Native people who carry so much trauma about the loss of their language. So mostly, I haven’t tried to speak it except in our class contexts. And though I am beginning to understand more than I could have imagined, I am humbled too by how difficult it is for me to speak any of it, except for carefully constructed dialogues. I am truly still a beginner.

But the question closest to my heart these days is this: Since I have been granted this gift of learning the Passamaquoddy language, how can I give back? From this course, I’ve learned gratitude and the importance of reciprocity: so what is my responsibility now, as the recipient of such a gift of knowledge? Bearing in mind that I’m not training to be a professional teacher, and I have so little energy anyway because of chronic illness. I have done some activities in solidarity to Wabanaki concerns–but these are not related to language. I don’t have an answer right now. But I am holding this question closely. How can I give back? What is my responsibility in light of the gift of this knowledge? It may be that by holding the question, an answer will be revealed.