Endurance

I have a picture of me leaning off the edge of a cliff wearing a red-striped harness strapped over my gray track pants. In my gloved hands—right hand in front of me, left hand behind—I grip a rope. I am smiling gamely, because I am with friends, but I have made no bones about the fact that I am scared shitless.

It was the year before the illness struck. On a lark, my girlfriends and I had decided to give rappelling a try. Karen’s cute blue-eyed boyfriend was an experienced climber, and he agreed to be our guide and teacher.

The cliff was a mere thirty feet steep, but from where I stood the ground looked a long way away. I remember going down. It was a slow slide with a multitude of stops. There was not the freedom you see in the extreme sports movies, where the climbers push off and slide down, push off and then slide down, like spiders. No, I was more along the lines of a rappelling sloth. It wasn’t fun. I was too scared for it to be fun.

I didn’t go a second time. Once was enough, I figured. I’d gotten a taste. I could say I had rappelled off a cliff.

I think it’s fair to say that my life as a writer with a sometimes debilitating chronic illness is a lot like my one and only experience of rappelling down the bare face of a steep cliff: it’s slow going, a terrifying and arduous undertaking. Quite frequently, I feel stymied by my sloth-like progress.

When I was 21 years old, I came down with a case of mononucleosis which dragged into chronic fatigue syndrome (CFS), leaving me bedridden for the better part of fourteen years. The fatigue felled me. I couldn’t hold a book. Talking on the phone wiped me out. Walking a block to the corner store wrecked me. I took baths rather than stand in the shower. I stopped brushing my teeth at night.

It was as though my ship had sunk hundreds of miles from dry land and I had been cast adrift, the lone survivor of a terrible calamity. My bed was my lifeboat. I lay on it day after day as weak as a castaway wasting away for lack of food and water. I had read about chronic fatigue syndrome. I knew the prognosis. I was alone at sea, with little hope of rescue.

In 1972, eighteen rugby players survived three months high in the icy Andes mountains after their plane crashed and they were given up for dead. I am fascinated by their story, just as I am fascinated to read about the whalers who were lost at sea in The Heart of the Sea, and the Antarctic explorers of the ship Endurance,[i] who survived for months on a frozen island with no hope of rescue.

It all started in the early days of my illness, when I caught glimpse of a book called Annapurna, about the first women’s climbing team to make it to the top of the tenth highest mountain in the world. I have never climbed a mountain. I don’t expect I ever will, not even if the full bloom of health returns to me. But I picked up that book and bought it because I thought it might help me make it through.

Endurance. These stories of endurance fascinate me. How did those eighteen men do it? How did they survive the merciless cold, with little hope of rescue, forced to subsist on the cold naked bodies of the ones who had died before them? How did they hang on? How is it that none of them just walked across the ice field into purposeful oblivion?

In 1984, PhD sociologist Dianne Timbers came down with a respiratory infection. After five weeks, she appeared to have finally recovered. But in January 1985, she got sick again. This time, it didn’t go away. This was three years before the CDC defined the diagnostic criteria for an illness agency researchers named “chronic fatigue syndrome.” It was four years before I came down with a case of mono and experienced my own brief recovery a few months down the road, until I contracted a cold and the fatigue crashed back into my life with a vengeance and never went away again.

But Timbers got sicker, much sicker, than I ever did.

I lay on my back 24 hours a day, getting up only to use the bedside commode. I couldn’t talk above a whisper. Conversations of more than a few sentences caused a relapse. I couldn’t read, write, walk, listen to the radio, watch TV or sleep on my side or stomach. Being moved by wheelchair from my room every two weeks so the room could be cleaned caused a relapse lasting about a week. [CFIDS Chronicle, Winter 2009, p. 34]

Even eating was exhausting, so she only ate mashed food. But then one day a whole pea appeared on her plate, and she ate it. When she found that she could tolerate eating this one whole pea, she imagined that perhaps she might work her way up to other solid foods. Gradually, she increased the solid foods in her diet, until finally she was able to eat without having any of her food mashed.

She wondered if there might be a “one pea” equivalent for walking. In 2001, she began an exercise program based on her success with food. She started by sliding one knee to her chest while sitting in bed, once a day. After two and a half years, she had increased this exercise to six times per day. Over the next two years, she added arm and trunk strengthening work, and more leg exercises.

In late 2005, she began standing while leaning on the bed. After nine months, she was able to stand for three minutes, eight times a day. She began standing unsupported four months later. By June 2007, she was walking two steps a day. The next month, it was six, then 21, then 48, and so on, up and up and up.

Now she is able to cook her own food and do her laundry, walk without use of her scooter, and drive herself to medical appointments and grocery stores. She endured, and she has won her freedom.

To me, endurance is when you don’t know when or if you will be rescued and still you keep on going. Not one of the rugby players wandered off into the vast, obliterating ice fields. They waited. And finally, two brave souls took off in the direction which they hoped would lead them to verdant land and to people who could rescue their friends. Those two men walked for nine days through the mountains. No climbing experience, no equipment. They walked and walked, these gaunt men, until they came to a green valley and saw two shepherds on horseback and flagged them down. One of the men, Roberto Canessa, said in an interview,

You keep up that determination inside of you, thinking, saying, ‘One more step. Just one more step. I’m going to keep going, keep walking. Every step brings me closer…. I won’t die in the snow.’ And when you think you can’t take another step, you keep going. You get stuck, you curse, you hate everything, and yet, you get up and start going again. [from the documentary, Stranded: I’ve Come from a Plane that Crashed on the Mountains]

The same with the survivors of the ship Endurance. They didn’t know how they would ever be rescued. And finally a crew of them set off in a small boat and braved the frigid seas and made a miraculous journey to civilization.

Dianne Timbers didn’t know, when she started, if her exercises would bring her to a different place, or if she would be left stranded on the vast, desolate island of her brutal fatigue. But she did it anyway. The woman who found she could eat one pea then found she could slide one knee up to her chest, and then she could stand for a bit, holding on to the edge of her bed. Now, she walks two and a half miles every day.

I am tired, as I write this. My body is heavy. I lie under my tattered brocade quilt, propped up by white-cased pillows. I am surrounded by piles of papers on the biology of chronic fatigue syndrome, and the pages of the book I’m working on. “Writing,” said the naturalist John Muir, “is like the work of a glacier: one eternal grind.” I have many notes that need to be typed, but I don’t think I can sit in front of the computer too long today. Instead, I write in bed. I have the energy, at least, for that.


[i] The name of the ship that was crushed by pack ice, leaving its men stranded on the coldest, most isolated continent on earth, seems no small irony.

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  24 comments for “Endurance

  1. DeAnna Satre
    December 12, 2009 at 4:08 pm

    Congratulations! This is a grand start. Your writing and storytelling just get better and better. This account left me with chills–and I was uplifted too. Probably every human being needs endurance for one reason or another, and we can all use the encouragement your writing gives.

  2. admin
    December 12, 2009 at 4:19 pm

    Thanks, Mom.

  3. Jason
    December 13, 2009 at 5:47 am

    Very impressive. I have always had an interest in those stories you mentioned. I am lucky enough to get to teach about exploration at my school where I can share some of my thoughts and passions about these great explorers. You were very perceptive about their journey’s.

  4. admin
    December 13, 2009 at 8:10 am

    Thanks, Bro.

  5. Jean Rice
    December 13, 2009 at 9:19 pm

    Congratulations Lunden!!! Great to see this become a reality!

  6. Lowell Lunden
    December 13, 2009 at 10:47 pm

    Jennifer, your writing has impact, power. Your struggles over the years have been difficult but you continue to persevere and have an impact on the lives of others. Way to go! I’m so proud of you.

  7. admin
    December 13, 2009 at 10:59 pm

    Thanks, Dad.

  8. sherri stewart
    December 14, 2009 at 4:36 pm

    Wow Jennifer!!!!! That was very uplifting. I can’t even imagine what you have gone through.
    Great writing, I can’t wait to read more.

  9. Val Hart
    December 14, 2009 at 10:01 pm

    Lunden –

    This is great stuff. It opens a whole new world that I was barely conscious of before. I want to read more about the epics of endurance you’ve discovered, and about this mysterious syndrome.

    I love the image of the canary who tries to warn the world. “The canary sings” can carry the meaning of the bird who brings the truth through testifying, or the bird who finds joy in song; there are multiple meanings your readers can discover for themselves. It’s a beautiful metaphor.

    Just one suggestion, for clarity’s sake — when people like Timbers and Canessa are being quoted directly, make the transition more definitive, perhaps with italic font, or some other device. It would keep the reader from being momentarily confused.

  10. admin
    December 14, 2009 at 10:31 pm

    Good eye, Val! I hadn’t realized the indentation formatting I had used didn’t translate. I can’t figure out how to indent on this thing, so I’m italicizing.

    I so appreciate that this story has opened a whole new world to you, and that you are curious to hear more. I can’t ask for a better reader response than that. Other than a great big deposit in my Paypal account. Or an offer for a gig writing for Harper’s. Or, well, a book deal.

  11. Val Hart
    December 15, 2009 at 5:52 pm

    I was at the Deering High School library this morning and caught sight of a display there printed by the Press Herald maybe two years ago: a literary map of Maine (or something like that). One book, described as “an inspiring tale of youthful endurance,” grabbed my attention. You probably know of it, but here it is just in case you don’t: “Lost on a Mountain in Maine,” by Donn Fendler (1927-) as told to Joseph Egan.

  12. admin
    December 15, 2009 at 6:55 pm

    Cool! Thanks, Val. I’ll check it out.

  13. Denise Louis
    December 16, 2009 at 9:14 pm

    I can relate to your rappelling story Jennifer; I’m glad I did it, but once was enough for me too.
    Thank you for what you have written. For years I’ve worked with dental hygiene patients with
    these types of chronic illnesses, and have wished I could help. It isn’t right, that people have had to struggle on their own to figure out how to get better. The story is so often the same; it started
    with what seemed like a simple virus.

    I believe your insights will help me in my fledgling hypnosis practice, to offer some help to people with chronic illness. Thank you, and take care of yourself…

    Denise Louis -Relax for Change Hypnosis

  14. Kate
    December 23, 2009 at 2:52 pm

    I like it and am looking forward to reading more. By the way, Lost on a Mountain in Maine is a famous epic. Everyone in Maine, or at least everyone I grew up with , knows of it. I think they made a big deal about in school at one point although I don’t remember the details. I think of it whenever I am on a mountain or hiking. Which is thankfully more often than I sometimes would think. :)

  15. admin
    December 23, 2009 at 3:46 pm

    Thanks, Kate. Yes, someone else mentioned that book. I’m waiting for it to arrive at the library. I’m just finishing up *Miracle in the Andes* right now. What an incredible book of incredible endurance and heroism.

  16. claudia weidt-goldmann
    January 14, 2010 at 5:20 am

    Hello, please forgive my bad english. through facebook, I was on their side closely. It is possible, written pieces of them on our web site in the post with summaryplot their address? We would be very grateful and happy. We are a society in Germany, which is to advise umwelterkrankte networks of care and is outside of religion associations and economic interests in an honorary capacity. We call ourselves “international agreement for environmental illness” and they will find us in the internet here: http://www.ivuev.de us we would be delighted if they would send us documents (please word file) that we may not publish, with their consent, and our additional their address and source of the documents). thank nordhessen claudia Weidt-goldmann (Regional Office-East Westphalia), mail address: scna.w @ t-online.de

    Send please to the question “pollution-induced illness,” the mail. Thank you.

    claudia

    hallo, bitte verzeihen sie mein schlechtes englisch. durch facebook wurde ich auf ihre seite aufmerksam. ist es möglich, schriftstücke von ihnen auf unserer seite im internet zu veröffentlichen mit angabe ihrer adresse? wir wären darüber sehr dankbar und glücklich. Wir sind ein verein in deutschland, der sich netzwerkartig um umwelterkrankte beratend kümmert und ausserhalb von religionsvereinigungen und wirtschaftlichen interessen ehrenamtlich tätig ist. wir nennen uns “internationaler verein für umwelt erkrankte” und sie finden uns im internet hier: http://www.ivuev.de wir würden uns freuen, wenn sie uns schriftstücke zusenden würden (bitte word datei), die wir veröffentlichen dürfen mit ihrer zustimmung und unserem zusatz ihrer adresse und quelle des schriftstückes). danke, claudia weidt-goldmann (regionalbüro nordhessen-ostwestfalen), mailadresse: scna.w@t-online.de

    bitte mit dem betreff “schadstoff induziert erkrankt” die mail senden. danke.

    claudia

  17. Judie
    January 26, 2010 at 11:17 pm

    Write your message or comment here.

    It seems I read things when I am most in need of “hearing” what is being said. Thank you for your inspiring words–you are a very skillful, gifted soul. Keep on truckin…..and writing!!!!!

  18. Carrie J.
    January 28, 2010 at 7:51 pm

    Lunden, thank you for this line: “To me, endurance is when you don’t know when or if you will be rescued and still you keep on going.” That’s exactly what I’m feeling today with the MCS and chronic fatigue – I am telling myself just keep going and you don’t have to know what for – just trying to have faith in this keeping going thing, trying to believe that maybe it holds more merit than I sometimes think. *** Also, I really like the layout of your site – yellow makes me happy :)

  19. Sandra Pawula
    February 16, 2010 at 2:20 am

    Wow! Fantastic. Hope you are able to continue… Sandra

    http://healingei.wordpress.com

  20. Cialis
    March 11, 2010 at 7:19 pm

    Excellent article, I will take note. Many thanks for the story!

  21. Sue Renaud
    April 7, 2010 at 12:03 pm

    Write your message or comment here.

    As usual, Lunden, I am so impressed with you. Your messages always give me hope and more hope. I would like for my daughter to be on your e-mail list and receive your hopeful messages. She is in the beginning stages of our illness and needs to hear your messages.

  22. Nancy Cook
    April 7, 2010 at 3:32 pm

    Great writing, Jen. Very interesting to hear more about how Chronic Fatigue Syndrome has affected you. So glad you’ve gotten better.

  23. Nicole
    April 7, 2010 at 4:30 pm

    Yellow website. Yellow wallpaper? Yellow canary? You are bright star, L. I want more.
    XOXO

  24. Jennifer Lunden
    April 7, 2010 at 4:45 pm

    Thanks, Nicole. More is on it’s way. I never thought of the Yellow Wallpaper connection. Brilliant!

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