Living a fearless life

Christopher Reeve put a famous face on disability, and inspired many people around the world. Before his death in October, he was working on this essay about courage.

| January/February 2005 issue

I live a fearless life on a daily basis. I’m reminded of that every time I come into New York, because I’m put in the back of a van, strapped down by four straps, and driven around by a bunch of guys who just happen to be firefighters from Yonkers. These guys are used to driving fire trucks--at great speed--so when I get into the van, I have to give it up. As a self-confessed control freak from way back in my early childhood, being able to sit in the back, assume that we’re going to safely reach our destination, and actually doze off has been big for me.

This one hour van trip is a good metaphor for the journey I’d like to talk about. For so many of us, the source of our fear is the loss of control. But the more we try to control what happens to us, the greater our fear that we’re no longer empowered, that there’s no safety net, and that dangerous, unexpected things may happen. Ironically, the act of trying to control what happens is what actually robs us of great experiences and diminishes us.

The lesson I had to learn when I had my injury was pretty drastic because my life before that as an actor had been one of self-sufficiency, perseverance, and discipline. I had been extremely self-sufficient from the time I finished high school, all the way through college and graduate school, and as I made my way to Off-Broadway, Broadway, television and film. I had done well and was used to being in charge.

My accident was a strange and very close call. If I had landed differently, even by a millimeter in one direction, I wouldn’t have been injured; if I had landed a millimeter the other way, I wouldn’t be here today. I had, at best, a 40 percent chance of surviving my surgery, during which my head was actually reattached to my neck. Also during the surgery I nearly died as a result of a drug reaction. I was told I would never again move below my shoulders, that I would absolutely have no further recovery, and that my life expectancy at 42 years of age was, at best, six to seven more years.

I dealt with it with my wife Dana at my side, thank God. We just decided not to buy into the fear that people tried to instill in us. This decision was the most important of all. How many people are walking around today three years after they were told that they only had six months to live? How many of us are doing things now that we were told that we could never do? It happens all the time. In 1995, when I was injured, scientists didn’t yet understand how to regenerate the spinal cord. Recovery in this field was still a mystery. Dana and I figured that if doctors didn’t know what could be done, we were not going to accept their absolutes. We figured we should look at the glass as being half full and simply try to go forward. Were we happy about it? No. Did we feel uplifted by this challenge? Absolutely not. Not at all--not for one second.

But I’ve learned that it doesn’t matter. In fact, one of the keys to going ahead and conquering fear is to ignore your moods. Ignore it when you feel like you really don’t want to do whatever it is today. Ignore it when you feel like you can’t be bothered. Often you start the day feeling bad--feeling like you don’t want to do something or you are treading water and getting nowhere or you can’t keep going--and the day turns out to be one of the best you’re ever going to have. You have to leave yourself open to possibility. By staying in the moment regardless of how you actually feel, you leave yourself open for surprises, both on a big scale and on a little scale. That was my first lesson. We decided that I would go to a rehab center and make the absolute best of it. Why? Because everyone was saying nothing would happen, and I don’t take kindly to that. I was given a spinal cord manual that tells you all kinds of things that you really don’t want to know. A spinal cord injury affects every organ and all the systems of the body. It’s not that you’re just sitting in a chair, paralyzed. Your skin breaks down, your circulation and cardiovascular systems break down, and your bone density weakens. I noticed that there was nothing in the manual about people with an injury higher than the fourth cervical vertebra; that was because not enough people lived to make it worth writing about.

I took exception to that. I wanted to be in the book! I had a second vertebral injury, which is about as high up the spine as you can get and still live. I remember telling one of the doctors, “My goal here is to make you have to rewrite the book.” Long story short: One day four years later, after all the work I did at rehab, I received a copy of a manual. A new manual.

In those days, doctors didn’t really believe in physical exercise for people with high level injuries like mine. I decided that I was going to demand to exercise. This meant electrical stimulation of the muscles so that I wouldn’t lose muscle mass. It meant being put on a special bicycle with electrodes so that my legs could get better circulation and I could get a cardiovascular workout. It meant going into a swimming pool, which allowed me to regain movement.

First, I had been told I wouldn’t get any recovery at all. Then they said I might recover a little within six months to a year from the time of my injury. After that, I could forget about it. The year passed, and I decided to keep exercising just for my own sanity, for my own peace of mind. I wanted to embrace rather than fear my situation, even though I hated it. Sometimes you have to embrace things you hate. So, I exercised very hard. Five years after my injury, I suddenly found I could move one finger on my left hand, my left index finger. A couple of scientists saw that and flipped out. They made me the subject of a study at Washington University in St. Louis. Between 2000 and 2002, I ramped up the exercise, and guess what happened? The movement in my finger spread. Suddenly, I was able to put my foot on someone’s shoulder, bend my knee, and push my legs. I was able to use my biceps and open my arms all the way, moving them back and forth. I could make a snow angel.

The results of this study were published in December of 2002 in Science magazine and in the Journal of Neurosurgery. That was a victory for me. More importantly, it proved a theory held by Dr. John McDonald of Washington University that if you get someone with a spinal cord injury moving and exercising as soon as possible, it will help recovery. Energy and memory are actually stored in the spinal cord, and so remaining neural connections can be developed and used.Washington University now has a center for spinal cord injury where, at the moment, 300 patients are recovering by doing the same things I did.

I also tried alternative medicine because I had letters and inquiries from all kinds of healers. I’m sorry to say a number of them were way out there, but I did find out that our minds and our spirits have a tremendous ability to affect the body. On the downside, we can make ourselves sick. On the upside, we can definitely affect the healing process. I discovered this during the summer of 1997, when I had an infection on my left ankle that went all the way down to the bone. I was told that if it went septic and contaminated the bone once again it could be the end of me. The doctors tried an antibiotic but I was allergic to it so I had to stop taking it. That summer I decided to spend eight weeks sitting on the porch of my house, looking at the mountains, and reflecting on the fact that everything in nature wants to be whole--from the micro-organisms of our bodies to our nation and even the planet. I envisioned my ankle the way it used to be and envisioned that it wanted to be whole. Over those eight weeks, it healed. Now you wouldn’t even know there had been a scar there. And anybody can do it. I am not skilled and I have not studied these things, but I’ve experienced them and anybody can do it.

I am proud of what I have achieved, but my path hasn’t been without problems and difficulties. You have probably heard about my successes through the media, but you don’t really know about the setbacks and the difficulties. About a year ago, I was the second patient in the world to have diaphragm pacing implanted into my body. It’s like a cardiac pacemaker, but it stimulates the diaphragm to create normal breathing and replace the ventilator. I felt that it was safe and that there was a good chance it would work. It didn’t. It failed.

For over a year now, I’ve had infections and all kinds of signs of rejection by my body, and the site of implantation is still not closed. That’s why I am still on this ventilator, why I can’t go into the swimming pool anymore, and why I haven’t moved beyond my initial level of recovery, where I plateaued. And yet I’m telling you this because it is important to know that living a fearless life means that you might go through an experience that doesn’t actually work out for you. The way to stay positive, to avoid being bitter or feeling like a failure, is to look at the fact it might help somebody else. For example, this failure of the diaphragm pacing has led to modifications in how doctors perform the procedure, and the set of patients who followed me have all gotten off the ventilator.

In 1996 I was one of the first to experiment with something called “treadmill walking therapy,” where I was held up by a harness and put on a treadmill, just like in a gym. This kind of therapy works because the spine has energy and memory, and so the central pattern generator in the lumbar area remembers how to walk. It doesn’t take much brain power to walk. After 60 days of treadmill therapy, a lot of paraplegic patients have been able to walk again. So far in the United States alone, more than 500 people have made it out of their wheelchairs that way.

I, however, had an accident when I was put on a treadmill one day because the doctors wanted to shoot a video of how it works. They cranked up the treadmill to three and a half miles an hour. I got up on it, and I took some beautiful steps. They got the shot. It was perfect, and the actor in me was happy. But then I broke my leg. My femur, the big bone in my thigh, snapped right in half. I still have a 12-inch metal plate with 15 screws in there holding it together. What happened? It turned out that I had osteoporosis and my bone density wasn’t strong enough to take the pace of the treadmill. So for me, there is no more treadmill at the moment. But for others, there is a new protocol, a new standard. Now they know that before they put anybody on a treadmill, they must do a bone density scan to make sure the patient doesn’t have osteoporosis. Something good came out of that.

You might wonder why I went in so early on some of these experiments. I’d been pushing neuroscientists to be fearless, to not get hung up in the laboratory doing experiments forever. So, I felt that if I was pushing scientists to be fearless on the biological level, I had to do the most I could on the rehab level.

The biggest problem in science right now is that researchers are afraid because they don’t want to fail. Why? Because if they fail, they might not get a grant, and their livelihood is at stake. So they say, Okay, another experiment. They say, Let’s try this again, and try it again. Meanwhile, there are hundreds of thousands of people with spinal cord injuries and millions of others with diseases and disabilities who are waiting until scientists and doctors get over their fear.

Of course, the world has known a number of scientists who have had the courage to go ahead. One of my heroes is the heart surgeon, Dr Christian Barnard. He was working in the United States in the 1960s, and the ethics commission overseeing his work hemmed and hawed for so long that he finally closed up shop and went back to South Africa, where he was able to perform the first heart transplant in the world. True, that patient only lived 12 days. But Bernard learned more and more about anti-rejection drugs and improved his technique and procedures, and the next patient lived 30 days, and the next one lived even longer. Today, having a heart transplant is practically routine. Why? Because Christian Barnard was fearless about it even while the system was afraid.

The system is built on fear and that is what stops some of the most courageous people from moving forward. Think about what would have happened to the Wright Brothers if there had been a flight safety commission when they were working on their models. Do you know how many times the Wright Brothers crashed? They wiped out on a weekly basis. It was almost embarrassing, and I’m surprised they didn’t kill themselves. But they didn’t; they dusted themselves off and said, All right, there is something we’re not getting quite right about this plane. They built another plane model and another and another until, finally, a couple of bicycle shop owners from Dayton, Ohio, using their own money, flew.

There are also going to be times in life when living fearlessly is very simple. One of the first things that happened after surviving my surgery was that I lost my finesse. My social skills went down the drain. I realized that social skills are, to a large extent, mini-lies. Now when someone asks me a question, I have learned to tell the truth because, really, what the hell do I have to lose? My father, who was a writer for his entire life, said to me at one point, “Why don’t we work on writing your life story and write it together?” Before my injury, I would have said, “Uh, that’s interesting. Let me think about that.” Instead I said, “Never in a million years. There is no way I could write the truth about my childhood.”

Of course, the greater difficulty lies in being fearless in surrendering and in giving. I don’t want to sound too noble, but I really have been able to say, All right, I’ve had some setbacks, but look at the other people who have benefited. I recommend you do the same thing because being fearless is not always going to get you exactly where you expect to go. It might take you in a completely different direction. It might not give you what you want, but it can satisfy you to know you did something for the world, for the planet, or even just for your family or your neighbours. And that’s enough.

There are lots of ways of being fearless. I highly recommend it. To a large extent, the key to fearlessness is the “no matter what.” Keep that in mind. It’s truly amazing what we can do by allowing the spirit and mind to flourish. Our capabilities go way beyond our understanding. Trust in that and go forward. Get past the clutter, the noise inside you that says, “I can’t, I can’t, I’m not good enough, I don’t feel like it, I’m sick, I don’t want to.” That is just like static on a radio. Just clear the channel, find good reception, and you’ll be amazed by what you can do.

Excerpted from Spirituality %amp% Health ( February 2005)— one of the most reliable, most rewarding sources of information about leading a healthy, happy, harmonious life. This essay was adapted from Reeve’s closing speech at OMEGA’s Living a Fearless Life conference in New York City in the spring of 2004. The Omega Institute (www.eomega.org) is America’s largest holistic learning center with programs focusing on health, psychology, spirituality, yoga, music and art at retreat centers in the Hudson Valley of New York state and the Hill Country of Texas, and other sites around the U.S., Central America and the Caribbean.

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