A Sudden Illness by Laura Hillenbrand

With the publication of the excellent article in the New York Times Magazine last week, The Unbreakable Laura Hillenbrand, I just noticed that trending stats on my blog show many searches for her harrowing and moving account of the onset of her ME (CFS in the article), A Sudden Illness. I also noticed that the links I posted a few years ago for that article, which was originally in The New Yorker, were no longer working (and you have to pay to access the archives). So, here is a .pdf file of her article: A_Sudden_Illness.

I really want to feed the public’s curiosity about her journey and this illness while the NY Times article is still featured on their site (currently in the Health section and #4 on the Most Emailed list). Please feel free to share this post so we can educate while people are curious around the marketing of the film, Unbroken.

After reading the NY Times article, a few things stuck with me: she separated from her husband, which is heartbreaking, yet, sadly, understandable; she can walk down a street, go up and down stairs, do yoga; she has gotten much better and had horrific relapses; she still suffers constant vertigo and hasn’t gone insane; she is taking “new drugs” (what new drugs??)… and some of the workarounds we have to do to accommodate this illness can lead to a richer experience.

Another thing that stayed with me: her first editor said, after 25 years, “the first draft of ‘Seabiscuit’ is still the best he has ever received.” Damn, imagine being that writer. Would be a dream come true for me to publish a book, let alone have it touch millions.

There have been other interviews with her, but I’ve never seen one as thorough as this one by Wil Hylton. Hillenbrand said on Facebook, “I am so moved and grateful. Thank you, Wil, and to everyone who was interviewed for the piece. I can’t express how stirred I am by this.”

The New Yorker listed A Sudden Illness as one of the top ten most requested articles from 1999 to 2009, which speaks to the legions of sufferers looking for any information and first-hand accounts of onset. I know I was and that article changed the way I viewed my illness — it was at once comforting and totally terrifying, it both inspired me and left me hopeless. Mostly, it was validating.

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I listened to Seabiscuit while driving my brother’s Isuzu Trooper from Knoxville, Tennessee to Durham, North Carolina to New York City. It was the first book I’d ever listened to on tape. I rented it from a Cracker Barrel (a restaurant chain, dotted along highways, that rents books from one location and allows you to return them to another) and it will always be inexorably linked to that road trip during an exhilarating summer. I’d had my first scary health incident a few weeks earlier — a two month headache that called for a lumbar puncture, which landed me in the emergency room the next morning with the worst pain I’ve ever experienced in my life. I wasn’t told to stay lying down after the procedure and my cerebral spinal fluid was seeping through the puncture wound that never healed. But, when I drove to New York soon after, I was a woman unleashed and vibrant, soaring with that new gratitude you can only get from a scary hospital visit. I had no schedule, no job, some money saved and Seabiscuit was my travel companion. We parted ways just as I was driving into Manhattan on a hot August night, wearing a skimpy sun dress and chunky sandals. All the windows were down and I was enveloped in those pungent NY smells and frenetic lights and noise: They fed me like life force. I had never heard of ME and I had no idea that one day, like the author of the book I just listened to, I would be housebound and forced to listen to books rather than read them… That evening, driving on the open road and then jumping out of the jeep to hug my best friend from college in the middle of the shimmering heat of Manhattan, might have been the most alive I’ve ever felt.

And then there’s Unbroken. If you’re one of the few I haven’t told to read it, I’m telling you now: Read it. Don’t go see the movie instead. Interestingly, while my husband was shopping in a Torrance, California Whole Foods the day before I went to see Dr. Chia and the first time leaving Seattle in two years, there was a public memorial service being held to celebrate Louis Zamperini’s life a few blocks away. Funny how things come back around like that.

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By the time he returned to check on me, I was sweating profusely and chills were running over me in waves. He took my hand and was horrified: it was gray and cold, and the veins had vanished. He spread blankets over me and tried to help me drink a glass of milk. I couldn’t sit up, so he cupped my head in his hand and tipped the milk into my mouth sideways. It ran down my cheek and pooled on the pillow. My teeth chattered so much that I couldn’t speak. Borden called an emergency room. The nurse thought that I was in shock and urged him to rush me in. But we were far from the hospital, and doctors had never been able to help. I was sure that being moved would kill me.

— From A Sudden Illness
I have been there so many times.

Rag and Bone Blog Anniversary

I started this blog one year ago today. I never thought it would become a permanent part of my routine and something that gives me such pleasure. I started it as a daily tracker of treatment with low-dose naltrexone. The original url was ldndiary.com.

Since then, I have sacrificed most correspondence and contact (emails, cards, phone calls) and used my limited energy to write blog posts so that friends and family will all have a place to go to see how I’m doing. Of course, relationships are a two-way road and my hope is that my loved ones will continue to contact me. I will answer or pick up the phone when I can. If I can be an ear for someone or a shoulder to cry on, it makes me feel like my old self again ~ a reciprocal, functional friend.

This is a very tough line to walk for everyone involved. I’ve had friends tell me they thought I just wanted to be left alone. I am a very private person in some ways. I will lay bare my feelings, my opinions and my thoughts, always ~ I can’t be shocked or grossed out, I am rarely offended ~ but, I’m oddly private about sickness because I don’t want to accept that this happened to me. I want to believe that I am healthy and vibrant. I left my job and only told my bosses why. And I even told them half-truths. Everyone I had worked with for over 8 years didn’t really know what had happened. Eventually, I sent a select few individuals a link to my blog and said, “I’m not purposely out of contact. This is what is going on.” So, I understand completely why people didn’t contact me ~ they didn’t know and, if they did, they were trying to respect my privacy and hermit-ism.

Recently, a friend on Facebook commented on what a good book Unbroken is and I took the opportunity to comment that the author Laura Hillenbrand‘s story is as incredible as Louis Zamperini’s. I also mentioned that I was dealing with the same illness. I’ve been sick for almost 2 years and that was the first time I had said anything about ME/CFS on Facebook (and it’s not because I have thousands of friends on there ~ I’m selective; I’m only friends with people I know and like).

I don’t know if I’ll ever accept my limitations. I used to think of myself as a workhorse, a rock, an efficient multitasker. I spent my life feeling exuberant, passionate and ambitious. At work, I had huge responsibilities, I was in charge of seven restaurants and, no matter how stressful it was, I felt trusted, knowledgeable and accomplished ~ all traits that help self worth. This illness stripped me bare. Suddenly I felt weak, dependent, unattractive… Suddenly, my dreams for the future were out the window. I worked so hard to get where I was in my career and I had only just got there ~ I’d only just started to feel comfortable in my expertise and financially secure. My support network and any activities that gave me joy vanished… This on top of my new broken body.

I guess, after being sick almost two years, I’m finally coming around to the idea that it’s not a failure, not shameful. We all will grow old and health will fail. Mine just happened a little earlier and a little more abruptly. That’s what I tell myself. And I squash the voice that says No, this is worse than the majority of health problems. What do I know? I haven’t walked in anyone else’s shoes.

I think finding friends in the blogging community and making contact on ME/CFS forums has helped in ways I could have never imagined. I truly care about these people that I’ve never met face to face. I wonder how they are and I worry when they don’t write. They have made me laugh and cry. They comment on my blog and I feel like, I may be housebound, but I’m not alone. I’d never read a blog in my life until this day last year and now I am so incredibly grateful for my little circle of online friends who understand what I am going through and give me strength.

Thank you to my family for visiting, cheering me on and sending care packages to cheer me up. Thank you to the friends who call me, confide in me and tell me all the time that they’re thinking of me. And thank you to my blog family ~ my blamily. 😉 You know who you are. I wouldn’t finally be finding acceptance and hope without your help.

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