Pity Party

You are invited to an honest-to-goodness, true blue, no-holds-barred Pity Party in honor of Lunden and her life of suffering and deprivation. There will be no playing of the miniature finger violins. Not even a regular violin will do. No, Lunden’s story of suffering and deprivation can only be met with a full-on cello. The real thing. If you have one, you are welcome to bring it.

Not long ago, I wrote an invitation to my pity party. I imagined that if I could have an actual pity party, the real deal, that it might help me heal. One of the lingering effects of this illness is the feeling that I am alone, an outsider. People don’t understand that I am seriously ill. So I think pity gets a bad rap. People diagnosed with cancer get pity, but people with chronic fatigue syndrome get, “Oh, I get tired, too. Have you tried hot yoga?”

I don’t know if I will ever summon the courage to host my very own pity party. But on a recent Friday night I may have gotten the next best thing.

The theme that night at Portland Playback Theater was “Before and After: Stories of Life-Changing Moments.” I was nervous all day. I was pretty sure I would tell the story of my illness. Before: not sick. After: sick.

Portland Playback Theater performs every First Friday in the vestibule of the First Parish Church on Congress Street here in Portland, Maine. It is community theater at its very best. A member of the audience volunteers to get out of her seat and join the “conductor” in a chair on the stage, facing the audience. Then she tell her story. The conductor reassures her if she is nervous, asks a few questions, and then gives the troupe a brief directive. The teller then moves to a chair at the front of the audience and watches her story played back to her.

On this night, Bob, a burly outdoorsy type, was the conductor. I sat down next to him and began my story.

Last time I was here, I told a story about meeting a handsome man who taught me to tango. Afterwards, a number of people came up to me to tell me how much they envied me, what a blessed life I seem to have. I thought about it later, thought about the other stories I have told here. The story about the Italian woman on the plane who invited me back to her village and took me in for three days. The muscular Belizean man I saw from across the crowded bar one Christmas Eve, who later became my “Christmas present.” And when I thought of these stories, I thought, Gee, these stories make it seem like I really am blessed.

Bob said, “And in real life you’re not?”

And I said, That’s just the thing. I have not felt blessed.

I stopped. I said, I’m always nervous when I get up here, but today I’m more nervous than usual. Because this is important. I felt my voice wobble, just a bit, as the tears welled up behind my eyes.

Bob said, “Look around at the audience. They’re right here with you.” I did, and they were.

All my life, I have not felt blessed. When I was twenty I moved to Maine to start my adult life. I wanted to be free. To find meaningful work. To take the bull by the horns. But within a couple months I noticed I felt very tired. It got so bad, I finally went to the doctor. The doctor told me I had mono, but it stretched out into chronic fatigue syndrome. When I was first sick, I was so tired that even walking half a block down the street to the corner store wiped me out for the day. I felt the audience exhale in a way that told me they heard me, they heard how ill I had been, and they were stunned at how bad it was. The doctor told me I was just depressed and to go back to work.

I have lived with this illness for twenty years. My energy has improved and I don’t get depressed the way that I used to. I’m able to have a full life, and I work part-time at a job I love as a therapist. But still, I live with this illness every day. I developed multiple chemical sensitivity, which means I get headaches when I am exposed to chemicals like perfumes and air fresheners, cleaning products and fresh paint. And I have food allergies so bad I can’t eat any grains or any sweeteners. It is hard. I feel oppressed by my own body. And it makes me feel like an outsider, because most people don’t understand anything about it.

But when I thought over the stories I have told here, I began to see the ways that I am blessed. A year and a half ago I signed up for a writing workshop that was going to be facilitated by Meredith Hall, who wrote a beautiful memoir called Without a Map, which is in its own way a book about being an outsider. I had been so touched by the book that there was no way I could pass up the chance to take a workshop with her. I had even written her a fan letter. Well, the group of us—all women—we just got along so beautifully that we decided to get together once every season. Meredith, too.

After our last get-together, as I was pulling out of Meredith’s driveway after a long day of writing and talking and eating and laughing, I found myself thinking, My life is pretty good. So I do feel blessed, I said, tearing up. And it seems like things are just getting better and better.

Bob asked, “Can you pinpoint the moment when things started to turn around?”

And I said, Well, my improvement has come at a glacial pace. But a long time ago, almost ten years ago, I was talking one day on the phone with my friend Gail about how much it sucked to be sick and how mad I was at my body for letting me down. And she said, “Do you hear how you are talking about your body? How do you expect to get better when you think of your body as the enemy?” That was a real wake-up call for me. I realized I needed to change my attitude about my body. I needed to be gentler with it.

Bob thanked me for my story and asked me to sit in the teller’s chair, facing the actors. He asked me to choose an actor to play me. I chose Erin, who has a round face like mine. And then the play began.

One of the actors threw a gray cloth over Erin and she stooped down under the weight of it. “Oh, I am so tired. Why am I so tired?” Another actor, Marsha, stepped forward and stood next to her. “I’m your body,” she said, hunched and dejected. “I’m sorry.”

The other actors flurried around Erin and her (my) body. One proclaimed, “It’s all in your head.” Another said, “You’re just depressed. You need to get a job.” Erin said, “I can’t eat any cake, any ice cream. I hate you, body! Why have you let me down?”

Marsha hunched even lower. “I’m sorry. I can’t help it.”

I sat there in the moment, totally absorbed. My eyes welled up with tears. I felt heard. I felt seen. And I had a whole audience behind me, and they were hearing and seeing my story, too.

But now, as I sit to type it, I feel I cannot capture the beauty and heart of the thing. I wished, as I watched the drama unfold before me, that I had a video camera, so I could capture it and save it. If I had, I would watch it now, so I could get it down right.

What happened next? Oh. Erin was on the phone with my friend Gail (played by Emily), and Gail said, “Don’t you see how you’re talking about your body?” And Marsha, my body, all drooped and sad, said, “Yeah, it hurts me. I’m sorry I let you down.” And Erin said, “You’re right. I need to be gentler to my body.” And Marsha stood up a little straighter. And the fabric dropped off of Erin and she stood straighter, too, and she said, “You know, maybe I am blessed, after all. Yes, I am blessed.”

I put my hands together under my chin in a gesture of gratitude and made a little bow to each actor and to Bob. Then I walked back to my seat.

Later in the evening, a young woman in her early twenties got up and wept as she told a story about how painful her parents’ divorce was to her, but she realized later, “like that other woman,” that in some ways she had been blessed. She was so tender and young up there on stage and I was touched that my story had influenced her to tell hers.

When the night ended, a woman who teaches dance turned around and told me she understands how it feels to be betrayed by your body. She was once so disabled by panic attacks she never could have come to an event like Playback. Her voice caught as she said, “Dance saved me.” A woman from the troupe came up to thank me for my story and tell me how much she loves Meredith’s book. And a man I soon recognized as Val, a fan of my writing, whom I first met at the Maine Writers and Publishers Alliance workshops at Haystack, put his hand on my shoulder and said my story had brought a tear to his eye. He said he had lost track of my email address and wanted to make sure he wasn’t missing any of my blog. He said, “You must keep writing. It’s important, what you’re working on.” I told him I would be getting back to it, finally, this week.

I approached the troupe clustered at the front of the room to thank them again. Emily said, reaching her arms around me, “I want to give you a hug.” Marsha thanked me for the story, and said that it opened up the audience beautifully. “We’re always glad to get a Lunden story.”

Again, I was amazed. I had been reluctant to raise my hand, thinking, “They must be saying, ‘Oh, enough already. Put your hand down and let somebody else tell for once.’” I always think they must be thinking that. That I must sit down and be quiet. That I am being greedy, taking up everybody’s time to tell my stories, when other people have stories, too. It is hard to believe, still, that people want to hear what I have to say.

And this time, I told my tenderest story. My story touched people, and their compassion was a blessing to me.

  9 comments for “Pity Party

  1. Sue Renaud
    May 3, 2010 at 7:56 am

    Thanks for sharing this with me, Lunden. It was very moving. We all do have a tendency to get on the pity pot and understandably so; it’s just that we can’t stay on it for too long. Things could be worse. We could be one of those MCS people who are sleeping in tents or in their cars and I am forever grateful that, at this time, I have a roof over my head.

    Great writing. I love reading everything you write.

    Hugs,
    Sue

  2. May 3, 2010 at 9:23 am

    great post as usual!

  3. Lucie Scholz
    May 3, 2010 at 9:54 am

    So grateful you shared this. Although I love to write, I sometimes forget how therapeutic it is and so my story gets lost in the process of busy life. Thank you for reminding me of this. I can relate to so much of your learning and evolution around “invisible” illness and find your ability to share it very brave and full of grace.

    Great writing indeed. I very much look forward to working and learning with you next year.

    Blessings,

    Lucie

  4. DeAnna Satre
    May 3, 2010 at 12:55 pm

    You may feel you couldn’t convey the heart and soul of the Playback, but I was crying as I read it. The best part of an event like this is leaving it, if not coming to it, knowing you are *also* blessed. That in itself is a large part of healing–rising up out of self-pity cleansed and clear seeing.

    I know some of my tears were for myself, feeling a kinship with you in people’s not understanding the cause and consequences of your illness, as I have had similar feelings about my PTSD. That’s something that soldiers and other people who have suffered an appreciable trama suffer from; my trauma wasn’t sufficient to *deserve* to have PTSD. I get from detractors: what is it anyway and why are you depressed? And the loudest voice is my own. So I thank you for sharing this story. A part of telling one’s story is recognizing that it deserves to be told, and there’s healing in the telling.

  5. alice james
    May 3, 2010 at 1:50 pm

    Hey–they told me I had CFS too for 5 years and then…

    Did you read my Nowish memoir? It is on amazon. And I am now worsish. Have also Lambert eaton MG plus stiff persons (plus residual severe cancer damage.
    You drive! Be sooo thankful. When that goes….

    trouble now with respiration, swallowing, pupils, bladder and bowel loss
    and to look forward to: increasing dementia!. The last year has been a nightmare…

    I thought you were coming over…so was waiting…. a bit. Happy about your canary

    love
    alice
    ps sometimes after many years, CFS seems to calm down for some people?

  6. Kate
    May 3, 2010 at 4:58 pm

    Absolutely beautiful. I’d love to go to something like that. I used to love theatre before I got sick. I didnt know there was community theatre in Portland.

  7. Jason
    May 8, 2010 at 8:42 am

    As our distance is so far from when I once slept on your balcony, it is a wonderful opportunity to find out another piece of your life. See you in 5 weeks!

  8. Gracie Cleaves from Playback Theatre
    May 10, 2010 at 2:18 pm

    Your story touched us all. If we actors at Playback Theatre want anything out of our performances, it is to honor the brave tellers of their always-perfect stories. Sometimes funny, sometimes painful and almost always awe inspiring, the audience experience pulls us from our traditional acting and improvisational training onto a different level of stage – your stage. Lunden, we love your stories and we treasure your loyalty to the medium of playback theatre. Keep coming. Bring others.

Leave a Reply

Your email address will not be published. Required fields are marked *