cuttings on Laura Hillenbrand on illness experience

http://emerge.org.au/wp-content/uploads/2014/07/The-New-Yorker-Jul-07_-2003_p56-65.pdf - article in New Yorker - 'A sudden illness - how my life changed'

http://stanmed.stanford.edu/2016summer/leaving-frailty-behind.html

Leaving frailty behind

A conversation with Laura Hillenbrand

This interview was condensed and edited by Paul Costello
Illustration by Lara Tomlin

She is an author of extraordinary success. Laura Hillenbrand’s Seabiscuit and Unbroken are literary phenomenons: Together, there are more than 13 million copies in print, and both have been made into blockbuster motion pictures. Seabiscuit, published in 2001, tells the story of a racehorse that captured America’s heart during the Great Depression. Unbroken, published in 2010, is the biography of World War II hero Louis Zamperini, who survived a bomber crash into the Pacific and more than 2½ years as a prisoner of war in Japan. Hillenbrand wrote the books while besieged by chronic fatigue syndrome, or ME/CFS, which has at times ravaged her like a tidal wave. Stricken in 1987, she has endured vertigo and exhaustion so severe that for many years she was incapacitated and housebound.

Recently, Hillenbrand has made a lot of changes in her medical treatments and in her life. There’s optimism in her voice and a sense of wonderment at new beginnings. A big one is a move across the country to be with her boyfriend in Oregon, where she finds solace in afternoon car rides with views of resplendent Mount Hood.

For this special issue of Stanford Medicine on well-being, we were curious: What does the word “well” mean to someone who has been unwell for so long? Executive editor Paul Costello spoke with Hillenbrand about her illness, her newfound strengths and how she is leaving frailty behind.

Costello: Does the term “being well” register for you?

Hillenbrand: I don’t really think about that as an aspiration, exactly. I think about if I could do this thing, if I could ride a bike for miles, or if I could climb to the top of the Empire State Building. What I think about is a life in which I don’t have to monitor my body. A life in which I’m not constrained in terms of what I want to do and not paying a huge price for what I do. I’m doing much better now than I’ve done in years, and I’ve started riding horses. That’s a great joy to me because it was something I did when I was a healthy person and I was younger.

Costello: Is horseback riding therapeutic for you?

Hillenbrand: Riding is very therapeutic. It’s also therapeutic just as a physical accomplishment. It’s a sport. For decades I didn’t do sports. I maybe could walk around the block. Now I put on my helmet and my boots, and I just feel like I’m more of a normal person. I love that. It’s a marvelous feeling to wed yourself to an animal of such strength.

Costello: It sounds like your life has taken a shift.

Hillenbrand: Everything has come together to give me a little bit of push. I started to test the boundaries and found out, “Well, I could do this. I could do that.” Each one of those things that I did would make me feel like, “Maybe I can try the next thing.” It’s an extremely slow process, and sometimes I overstep and slip backwards. But I keep trying. Once I got out here to Oregon, I got on a bike, which was another thing I was really into when I was healthy, and now I’m starting to ride a bike. Not very far. Not very well. But I’m doing it.

Costello: You moved from Washington, D.C., to Oregon. Did you have to prepare yourself?

Hillenbrand: It took years to get ready to do this. To put you in the perspective of where I was, I had not left Washington, D.C., since 1990 because of vertigo, which has been a problem for me for most of the time I’ve had CFS. It’s not a common kind of vertigo: It has been absolutely constant. It feels like the floor is pitching up and down. It looks like the room is moving around me. My desk is moving. Everything looks and feels like it’s moving. It’s hell.

I began to try to inure myself by getting in a car and riding for five minutes. It would be awful and I would feel terrible. I was so dizzy for an hour afterward, but I just wanted to see: If I keep doing this, can I teach my brain how to tolerate it? I’d go a little longer and a little longer. And over two years, I went from being just miserably dizzy after five minutes to being able to go two hours.

Once I hit two hours, I started thinking maybe I could come across the country. My boyfriend was living in Oregon. I wanted to be with him. I wanted to start a new life. D.C. was not the right place to be for someone with CFS who was very intolerant of heat. I also wanted a simpler world around me because complicated things are difficult with the cognitive problems from CFS.

I was in love and I wanted to be with the man I was in love with. We got an RV and we took a monthlong trip crossing the country and it was a miracle for me. It was the most wondrous thing.

Costello: What did you discover on the trip?

Hillenbrand: Every single thing was beautiful. Every drop of rain, every stretch of highway, every blade of grass was beautiful because I was not in a bed, I was not in a house. People kept saying, “Well, you’re going to have to be bored in the Midwest because it’s not pretty.” I thought it was gorgeous. I was gasping at the grasslands of Kansas. And I thought Illinois was resplendent. And then we went to the Badlands and I’d never seen a canyon before. I just shrieked when I saw it. It was a surprise. My boyfriend didn’t tell me we were going. He said, “Don’t look at the map. I don’t want you to know where we are.” We just pulled up and the land drops away and there are canyons everywhere. I can’t describe how overwhelmed I was by the beauty.

We went to the Black Hills and we went to Spearfish Canyon. We went out to the West Coast. I put my hand in the Pacific Ocean. [laughs] We started at the Atlantic Ocean in Delaware. I got in the water in the Pacific. What I experienced was an overwhelming sense of gratitude because I had been set free. I was not well. I am not well. I am always dealing with symptoms, but I was free enough to have that experience, to see America.

Costello: Love has really changed your life.

Hillenbrand: It’s the biggest thing that got me to take this leap. It was very, very, very risky for me to do this. I could have died on this trip. When I push too far ... at one point, when I tried to take a trip in 1991, I went into shock and very nearly died.

I could have landed in bed for another 10 years. It was so risky, but I just believed that I could do it. I believed in the person I was with. I thought, I have to try. I cannot live my whole life in a room. I can’t do it. I won’t do it. I’m willing to risk everything to escape.

Costello: Can you describe how you experience the illness?

Hillenbrand: The typical experience of it is akin to being bound in plastic so that you can’t move your arms and legs, you can’t speak and be heard. You are suffocating. It closes off the world to you in a most profound way so that all that is left of you is the thoughts in your mind, because you just aren’t capable of doing anything, of interacting with the world at all. There was a period of time where I didn’t leave the house for two years. I was too weak to do it. That is the physical experience of it. You become a purely intellectual thing because you are no longer a physical creature at all.

The parameters of my strength are nothing like that of a normal person. There’s a red line I cannot cross, because to cross it means to plunge into a “crash,” a devastating state of exhaustion in which I can’t stand, sit up, or sometimes even speak.

In terms of what that has given me, I feel like independent of what the cause of suffering is, there is this place that suffering takes you that is common to people suffering from all different kinds of things, serious diseases or terrible grief or all of the things that fell us in our lives.

In writing Unbroken, which is about servicemen at war and prisoners of war and people in horrific states of suffering, I felt like I was able to climb into their bodies and minds maybe better than I would have been if I had just been a regular healthy person.

I felt like I knew what Louis Zamperini felt when he was being held prisoner on Kwajalein Island and having medical experiments done on him by the Japanese. Not that I am comparing my disease to the experience of a prisoner of war. That’s a different and horrible thing that’s inflicted upon you by others. But the quality of the suffering … when he and I would discuss it, he knew I knew something of what he felt. He told me that enabled him to delve more deeply into it with me than he had with other people. He felt like if he told me this story, I would write it down right.

At the end he told me that what I wrote was so true to his experience that he kept having to put the book down and look out the window and tell himself, “I’m here. I’m here. I’m here. I’m not there anymore.”

Costello: Are there any scenes from either of your books that you return to when you are facing a challenge that seems insurmountable?

Hillenbrand: Stanley Pillsbury was the top turret gunner on Louis’ B-24 bomber. There is a very harrowing experience that these men went through when fighting off Zeros [Japanese fighter planes] after bombing Nauru Island.

A Zero was coming at Stanley Pillsbury and he had been shot in the leg with a cannon. His leg was horribly mangled. He was terrified. He was a very quiet and recessive kind of man. He did not have a swaggering kind of personality that you think of in a war hero, but he had this moment where he’s in agony with his leg dangling down and the plane has been hit 600 times by cannon fire and bullet fire. It’s likely to crash.

Somewhere inside himself Stanley found this wondrous strength and he pivoted in his motorized chair and he took aim. He could see the Japanese pilot flying toward him, and he thought, “I have to kill this man.” But he had to do it to save all the men aboard his plane. He fired and he shot down the Zero and he saved everybody on the plane.

That is something I go back to a lot because Stanley had no idea that he had that kind of strength in him, that he could do that. None of us knows what we would really be in these circumstances of extremity. Stanley found out that day. I like to remember that when I feel frightened. When I feel too small for my circumstances, I remember Stanley.

Costello: Your books are beloved. You’ve reached epic fame. How has that outside success impacted you?

Hillenbrand: Having been able to write the books was lifesaving for me. It gave me an ability to connect with the world. It gave me an escape from my body. It enabled me to create things that had importance.

These are not books that the world will turn upon forever. These are stories from history, but they are very inspiring stories, and they do bring joy and relief and peace to people when they read them. That means a great deal to me.

I had lost the ability to connect with the world in any way at all. Even just talking on the phone I couldn’t do much of the time. I was able, though, to write these books and tell these stories, and reach out to people I would never meet all over the world and create something. It validated my life.

It changed the way I thought of myself, also. Most patients will tell you that it’s terribly humiliating to have this particular disease, because it isn’t taken seriously. You are treated with terrible contempt, sometimes by your own family. You lose that respect that you normally receive in conversing with the world because people are really spilling contempt on you all the time.

It gets to you after a while. You start to feel like nothing because you’re told that all the time. That you’re lazy, and that you’re useless. These are words that I heard a lot. When I wrote those books, I proved I wasn’t lazy and I wasn’t useless.

Costello: Were you proving something to yourself?    

Hillenbrand: I was proving what I was. It was really, really hard to write a book with this disease. It’s never easy to write a book, but to do it with vertigo and to do it with exhaustion it took every bit of me. I would do it again because of the self-respect I got out of it.

Costello: Are you angry at the medical community over the disease being so misunderstood?

Hillenbrand: I felt very, very angry for a long time about it, angry with specific doctors who were particularly appalling in their behavior toward me. I was angry over the damage that caused, physically and emotionally.

I don’t feel contempt for the medical community. Different doctors are different people. I got my diagnosis from a wonderful guy, the head of infectious diseases at Johns Hopkins, who was the first person who was willing to say, “You have a serious disease, and the other people who have dismissed you are simply wrong. I don’t know what’s wrong with you, but I believe that you’re very ill.” That took humility for him to say. I am so grateful for it. I walked out of there happy even though he said, “I can’t treat you. I don’t know what to do for you.” But simply telling me, “I respect you, and I have a limit to my understanding of disease,” was a beautiful thing.

My physician in Washington, D.C., would exhaust himself trying to help me, and he would stay with me for hours. He would make house calls because I couldn’t come to him. He was wonderful to me.

I don’t blanket the whole medical community for what some people did back then, and I am treated with much more respect now.

Costello: What gives your life meaning?

Hillenbrand: I want my life to touch the lives of others in a positive way if I can possibly do that. I want to give as much of myself and whatever gifts I have to other people to make the world better if I can. I write with the goal of serving my subjects in terms of telling their stories and trying to illuminate the world a little bit with what those stories have to offer about living and about history. Those are the things that motivate me every day. A weirdly beautiful gift the disease has given me is to appreciate everything in this world, even the things that you simply take for granted if you’re well.