Jennifer Lunden on Writing, MCS, Maine Healthcare Activism, and Human Connection

Waking People up and Connecting with All Living Things

Interview with Jennifer Lunden, Maine Healthcare Activist and Award-Winning Writer and Social Worker

By Sharon Wachsler

Interviewing Jennifer Lunden (known to her friends as “Lunden”) has been on my list of things to do for a year. I first got the idea when her essay, which touched on her life with MCS, was published in the literary journal Creative Nonfiction. But before I managed to approach her, the piece had won the Pushcart Prize and Lunden had been named Maine Social Worker of the Year! 

There was always more to ask: during the weeks that we’ve corresponded, conducting this interview, Lunden has been leading the charge in crucial statewide health care activism. In fact, we both wanted to get this piece published this weekend because a year’s worth of her healthcare activism in Maine is coming down to the wire right now. And while Lunden certainly values words and writing, they seem to be most meaningful to her when they empower people to act!

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Where are you from, and where do you live now?

I was born on the army base in San Antonio, Texas, during the Vietnam War. When I was six, we moved to Peterborough, Ontario, in Canada. In 1989, at the age of 20, I moved to Portland, Maine, and I have been living here ever since. In Canada, where they have universal healthcare, I was healthy. I fell ill within months of moving to the US, where I was uninsured.

How did your being uninsured affect your experience of becoming ill—getting diagnosed, treated, or other aspects of your life?

That is such a great question, Sharon. First of all, as someone who was raised in Canada, the first time I went to the doctor’s here it just felt wrong that I had to hand over a check after the appointment. I’d never had to do that before. And here I was too sick to work, and somehow I needed to find a way to pay a doctor to help me get better. Talk about a Catch-22!

Eventually, I learned I could go to the hospital and apply for a “green card” and get free services at their clinic. Whenever I went to the clinic, it was a long wait and a different doctor every time.

Since those doctors proved incapable of helping me with my chronic fatigue syndrome (CFS), I soon turned to alternative treatments. But I was limited in what I could do, because I was so poor.

Eventually, when I went back to school, I used student loans to help pay for my medical care.

How did you become chemically injured?

Everything started with a case of mononucleosis that turned into CFS. Over time, as the fatigue gradually abated, the chemical sensitivity and food allergies got worse and worse. I can’t with certainty pinpoint a specific incident of chemical injury. But I have for a long time suspected that the flea sprays that I used to treat my cats and my apartment—when my immune system was already severely compromised by CFS—triggered the chemical sensitivity. Pesticides are neurotoxins. It is not a great leap of logic to suspect that they damaged my brain.

Your essay, “The Butterfly Effect,” was published in the esteemed literary journal, Creative Nonfiction, in the winter of 2011. Most of the piece was about monarch butterflies—their transition from caterpillar to butterfly, their migration, and their dwindling numbers due to habitat destruction, climate change, and other environmental damage caused by humans. However, woven throughout the essay are tidbits about how your multiple chemical sensitivity (MCS) affected your pilgrimage to study and experience the monarchs and their migration. 

When did you get the idea for this piece? How long did it take you to write it?

In early winter 2007, I was thinking about my predisposition toward seasonal affective disorder, and how much it helps to go someplace warm and sunny in the middle of winter, and I started to fantasize about a trip to California. I decided to take a storytelling workshop at the Esalen Institute. And then, as I began dreaming of California, it dawned on me that I could realize a lifelong dream and go and see the monarchs that migrate to various sites there. And then I decided to write about the monarchs. When you tell people you are a writer working on a story, sometimes they grant you special privileges. In this case, I wanted to tag monarchs, something I’d dreamed of doing since I was a little girl.

I began researching online, and that is where I learned about Pacific Grove, aka Butterfly Town, USA, and the Butterfly Lady, aka Ro Vaccaro. When I listened to “A Woman’s Metamorphosis into ‘the Butterfly Lady’” on All Things Considered, I had to meet her! I wasn’t able to find online contact information for her, but I did find a friend of hers, who gave me her mailing address. She told me the Butterfly Lady was in a convalescent home and in very poor health, but that she would probably love to meet me. So I mailed her a letter. Unfortunately, she died two days before I was supposed to meet her.

Lunden in California, just an instant after a butterfly took flight from her fingers.

I always say my illness made me an environmentalist. I thought I could find a way to tie together my experience of MCS with the story of the declining monarchs. I’ve always loved immersion journalism, since first reading David Foster Wallace’s essays in Harper’s. So I decided I would write about my experience flying to California to see the monarchs while coping with MCS.

A wonderful side benefit is that the storytelling workshop changed my life. In that five-day workshop, I transformed from someone with a core belief that nobody wanted to hear what she had to say into a storyteller. I suppose you could call it a metamorphosis.

As for how long it took. . . Oh, God. I am a slow writer. It probably took me three-plus months of committed writing on weekends, every chance I could get. And then when it got accepted, there were more weekends devoted to rewrites.

As I was reading your piece I was remembering the fields of milkweed at the community garden where my father gardened when I was a kid. I didn’t know that milkweed was so essential to monarch butterflies nor that it was being eradicated by herbicides, development, and industrial farming. I tried to remember if I had any milkweed around my yard, and if not, I thought, “How can I get some and plant it?” And then the answer was in your essay: monarchwatch.org

sells milkweed seeds so people can make their yards “monarch waystations.” Were you hoping, by writing this piece, to move more people to help the monarchs?

To me, we and the monarchs—and all the creatures on this earth—are inextricably intertwined. John Muir, the naturalist who founded the Sierra Club, said, “When we tug at a single thing in nature, we find it attached to the rest of the world.” So when I wrote “The Butterfly Effect” I was just hoping to wake people up. I thought people might not want to hear about my illness, but who wouldn’t want to hear about the beautiful butterflies? I believed the beauty and lyricism of the butterflies would make my message more palatable. I wanted a way to get people to read to the end and get the message. So, yes, I do hope that more people will help the monarchs. Monarch waystations are something fun that people can do. But we also need to fight GMO farming. We need to do that for the monarchs and for ourselves. And we need to take a serious look at our dependence on chemicals. There are other alternatives that are more sustainable.

Not only was your essay published in Creative Nonfiction, but it won the Pushcart Prize and was published in the 2013 edition of the Pushcart anthology. That’s a very big honor and gives your essay an even wider readership. I’m wondering how the MCS aspect of your essay has been received. Have you heard from people who didn’t know about MCS or were skeptics who were affected by your piece?

I love this question, because just a few weeks ago my Google Alert let me know that someone had blogged about “The Butterfly Effect.” Here is how she starts her essay:

I have a confession to make. This will surprise some of you who know me, but I’m afraid this story forces me to admit it, as shameful as it may be, and as hard as I’ve worked in the past to leave this particular part of my personality behind: I’m a bigot. No, not against race or gender or ethnicity or religion or any of the usual factors; I’m prejudiced against people who say things like, “I have multiple chemical sensitivity.”

The author is Karen Carlson, and I appreciate her bravery, and her transformation. Carlson confesses that she feels a little shamed by my essay, and a little resistant, but determines to explore her own resistance:

A selfish and quite bratty reaction to the lack of sympathy I receive for my own sensitivities, both those diagnosed and those merely evident? Guilt over the multiple cleaning products in my kitchen and my dissatisfaction with the baking-soda-and-orange-peel solution to everything?

She admits she is ashamed of her attitude, and says that the essay carries an important message about what we are doing to our habitat. “The canaries, the butterflies, Lunden, are all warning signs.”

I was so happy when I read this blog. Carlson is doing exactly what I hope the readers of this essay will do. She is recalibrating her preconceptions and recognizing something important about what we are doing to our environment, and therefore to ourselves.

I came across that blog post when I was preparing for this interview, but I had a very different reaction to it. I thought the blogger harped on about how she wanted to be able to distinguish the truly sick from the whiners and fakers. My impression was that she judged you to be a sympathetic person with MCS because she was so captivated by your writing, but that she still views other people with MCS with disdain.

It’s interesting that we had such different responses to that post. When I started reading it, I had expected to come out thinking like you. I had expected to go on a journey of discovery and change with the author, so I was disappointed by her self-professed “brattiness.” I’d love to see your way, though. Care to try to convince me?

It’s interesting to me, Sharon, that we had such different experiences of this piece. I can’t deny the likelihood that because Carlson is directly praising my work it softens me toward her perspective. I can see the sentence that you perhaps find most objectionable. It is when she wonders if part of her defensive initial response to “The Butterfly Effect” is due to “overexposure to the special snowflakes of the world, which makes it difficult to distinguish between those with serious issues and those who use sensitivity as an excuse for everything from irresponsibility to rudeness.”

You see…. I likely just floated on by that statement because she was not including me among those “snowflakes.” As I look at this more closely, I am curious about her experiences with sensitive people, and particularly her experience of rudeness, and what does irresponsibility mean, exactly, in this context?

Yes, a lot of judgment there. But I know if I didn’t have this illness, I would be judgmental, too. I would think MCS is a psychological problem, not a physiological condition. All a writer could want from such a reader is a beginning of a transformation.

I suspect that Carlson will be more open-minded toward the next chemically sensitive person she meets—even if she is still triggered by “the special snowflakes of the world.” I find it intriguing that she alludes to her own sensitivities and the lack of sympathy she receives for them. It makes me think of the Jungian idea of the shadow self—the part that we have learned to hide because it’s not socially acceptable in our families or our culture. Of course, it’s not socially acceptable to be sick. We challenge people to face something about life that makes them uncomfortable. Our illnesses challenge us in the same way.

What effect have these honors had on you or your writing process?

I don’t know that it has changed my writing or my writing process, but it has bolstered my trust in my approach and in my competence as a writer. Also, now when I tell people I am a writer, I feel legit. That is pretty awesome. Getting this essay published, and to such accolades, was like my coming out ball as a writer. It has begun to open some doors, as well, which is nice.

  

This past year, 2012, was a very big year for you—not only did you receive one of the highest honors for a North American essayist, but in October of 2012 you were also named Maine’s 2012 Social Worker of the Year by the Maine Chapter of the National Association of Social Workers. Can you tell me what you did to earn that award? 

When Governor Paul LePage and his Republican-dominated legislature wanted to strip MaineCare coverage from 65,000 low-income Mainers, I worried for my clients, and for all the people across the state whose lives would be impacted by these cuts. I emailed my legislators and told them my concerns, but that just didn’t feel like enough. I felt helpless.

One day, it dawned on me there was something more I could do. I decided to write a petition. I called it “Save Healthcare for Low-Income and Disabled Mainers,” and it grew slowly, and then it grew quickly. It was a little like playing the slots every time I hit the refresh button on my computer. People passed it around through email and Facebook, and three weeks later my petition had almost 10,000 signatures.

I hand delivered the petition—which was about four inches thick—to Representative Patrick Flood, who was the Chair of the Appropriations Committee. I had never before been to Augusta. Rep. Flood sat down with me for a few minutes and listened to my concerns.

There was a loud outcry against these cuts, in addition to my petition, and in the end, far fewer cuts were made. Another legislator, Rep. Jon Hinck, told me he had no doubt my petition made a difference.

I think we, the people, have let go of the reins of our democracy. We think we don’t have any power. But when we band together, we have great power. The way to take our country back is for each and every one of us to get involved in some way.

Since we started this interview you’ve taken on another activism project related to healthcare in Maine. This is an issue that you’re trying to get people to mobilize on now to contact their senators and representatives. What’s going on? What can people do to support the effort? And how did you get involved?

Well, Sharon, it’s all still part of the same project. Over 8,000 of those people who signed my petition to save MaineCare are still signed up to receive email updates from me. It’s a writer-activist’s dream! An audience of 8,000-plus! So because I have that audience, I feel a responsibility to keep people informed and to inspire them to act.

Even with Democratic majorities in Maine’s House and Senate, with our tight budget and our veto-happy governor, healthcare access in Maine continues to be at risk. Right now, LD 1066—which would accept federal money to provide health insurance to 69,500 low-income Mainers—just passed the House and the Senate. A similar bill was already vetoed by Governor LePage, and we may not have enough Republican support to get the two-thirds majority we would need to override the governor’s veto. So I am asking people to contact their legislators—especially if their legislators are Republicans—and tell them why it is so important to accept these federal funds.

People can find their legislators by clicking here. And they can find a sample email here at the Cover Maine Now website.

                                                                                 

Readers who would like to be kept apprised of developments related to healthcare access can still sign my petition—it’s not too late—which will get them on my mailing list. They can find it here. 

In your acceptance speech for the social work award, you encouraged others to contact legislators, write letters to the editor, run for office, and conduct other forms of advocacy. How does activism fit in with being a social worker?

It’s in the social worker Code of Ethics that we challenge social injustice. If all of us did that, I believe the world would be a better place. We have to hold legislators accountable. That means all of us. Not just social workers. Everyone. This is not a time to be complacent. Complacency is what has gotten us into this mess, and strong political action will get us out of it.

What gives you hope?

The Butterfly Lady—even now that she is deceased—gives me hope. When a monarch habitat was threatened, she rallied a town to vote for an increase in taxes so they could buy the property and turn it into a sanctuary.

Monarch waystations give me hope, and so do all the people who are fighting to make the world a better place.

And taking action gives me hope. I don’t want to stand helplessly by.

Where do you find meaning in your life?

At the height of my illness, I struggled terribly with depression. For years and years, I used to wake up in the morning and wonder what the point of it all was. What was the meaning of life? What was the point of getting up in the morning? I was looking for a big answer. But what I’ve found, since the depression has (long) abated, is that the meaning is in the small things.

The other morning in the car on my way to the park with my dog, Mabel, the song “White Lightning,” came on the radio. I used to be in a band that covered that song, and it felt familiar in an especially nostalgic way. So I sang along, and the way George Jones sings, “Whew! White lightning!” is just so silly, and it was so fun to sing along, suddenly I noticed that I was happy. Moments like that—small moments—give life its meaning.

When you get overwhelmed by the big things, by all the things that are going wrong, you have to reconnect to the small things, the things that make us human. Like many people, I was devastated by the shooting at Sandy Hook. One afternoon, as I was driving to a meeting feeling very dark about the world, I listened to a podcast of This American Life. In it, a young Somali woman was practicing her English so that she could go by herself into a coffee shop and order a cup of tea. An American woman was helping her. We hear her practicing nervously, we hear her go in and have to repeat her order, twice, and then we hear her celebrating her success with her American friend.

When I heard that story, something in me filled up again. Such a small story. But such a human story. That’s what it’s all about. It’s all about connection. Nothing else. Connection with ourselves, connection with others, connection with all living things, connection with All That Is.