Coping with Paralysis 'If There Is a God, He Is Certainly Not to Blame'

DPA

Part 3: 'I'm Constantly Afraid I Will Be Left Alone in a Corner'


Koch: Not necessarily.

Pozzo di Borgo: If it's a good joke I'll accept it, no matter who makes it.

SPIEGEL: The film about your life is also bursting with self-irony. "I would shoot myself," Abdel, the caregiver, says to Philippe, who replies: "That, too, is difficult for a paralytic." How is it that you can laugh about your fate?

Pozzo di Borgo: Humor is also a tool. You know, I'm constantly afraid that I'll be left alone, sitting in a corner. Because I no longer have the physical strength to convince you to help me, I just make you laugh. Then, you'll pay attention to me. The escape into humor is also a pragmatic way of dealing with our situation. And it's better for everyone involved.

Koch: There's a German poet named Ringelnatz who said: "Humor is the button that prevents us from bursting." There's a lot of truth to that. Besides, laughing is more fun than crying, at least for me.

SPIEGEL: Neither of you mince words when describing the condition of your bodies. You, Mr. Koch, write: "My hands hang there like the dead tentacles of an octopus." And in your book, Mr. Pozzo di Borgo, you write: "Pozzo has lost his virility. He's become the leaning tower of Pisa, always tilting to one side or the other." Why do you write so harshly about yourselves?

Pozzo di Borgo: Because you have to be honest about things. We're not in a movie theater here.

Koch: Naturally, most people can't imagine how it feels to have such broken limbs that just hang there, or what it's like to fall over, like some tower without a foundation. Parables or metaphors can help convey to others how disgusting or gruesome the situation can be.

Pozzo di Borgo: That's the important message Samuel and I have. You can remove yourself from even the most difficult situation if you can clearly name your fate, and if you've accepted it. But only then.

SPIEGEL: In a speech you gave when you celebrated your 60th birthday, you said that you were celebrating "42 healthy and 18 disabled years, each of which counts as seven, the way it is with dogs." What brought you to that comparison?

Pozzo di Borgo: When I was young and healthy, I had the impression that I would be young forever. Since I've been disabled, I appreciate every second. Besides, it's much more strenuous to live one year as a disabled person than seven years as a healthy person.

"Does anyone mind if I stretch my legs?" Koch asks carefully. He has been sitting in his wheelchair with his legs at an angle. "Please," replies Pozzo di Borgo. "I've been lying here comfortably the whole time." His shoulder keeps twitching, an external sign of the inner pain that torments Pozzo di Borgo day and night. But his face doesn't reveal the pain; instead, it remains friendly the whole time.

SPIEGEL: How do you see it now? Was there a reason for your accidents?

Pozzo di Borgo: If there is a God, he's certainly not to blame. He didn't want it. It's bad luck, a mishap, a mistake we made or an accident, but it's also an opportunity for us. Perhaps we were somewhat on the wrong path, and that's been corrected. That would be sort of a reason. At any rate, I'm not angry with anyone because of my accident, and I don't blame anyone, be it on earth or in heaven. I try to make the best out of it.

Koch: Philippe always has these incredibly intelligent responses, completely to the point. I like that. Unfortunately, I can't really see a reason for my accident. But I do believe that God can also fix a bad situation, that is, that he can straighten out a crooked path, and that I too will be able to see some sense in all of this over time.

SPIEGEL: Do you think it's okay that 60 milliseconds, as in your accident, can determine whether someone will live his life as a gymnast or as a wheelchair user?

Koch: No, fate is a stupid thing. (He chuckles.)

SPIEGEL: You have said that you were thinking of Psalm 23 as you ran toward the car in "Wetten, dass…?" "The Lord is my shepherd; I shall not want." Do you say today that psalms are nonsense?

Koch: No, not at all.

SPIEGEL: Shortly after your accident, you asked yourself: "What if God doesn't want me to be able to walk again?" What do you think today: Does God want you to be able to walk again?

Koch: God undoubtedly wants physical integrity for everyone. However, I believe that he has a different list of priorities than I do. Apparently other things are more important to him than my being able to move -- unfortunately.

SPIEGEL: What about you, Mr. Pozzo di Borgo: Did you become religious as a result of your accident?

Pozzo di Borgo: Before my accident, I had a center of gravity that moved between my head and the area below my belt. Since the accident, this center has moved upward, and now it's between my heart and heaven. Spirituality has become essential to me, as a disabled person. What distinguishes Christianity from many other religions is that it isn't necessarily a divine hand that decides everything, but that God wants us to be free people who assume responsibility. It would be good if the center of thought in our society would move a little higher up, especially above the waistline.

SPIEGEL: Mr. Koch, you even performed your jump on "Wetten, dass…?" with a blindfold. Do you now think, in retrospect, that you were perhaps tempting fate?

Koch: No, I didn't tempt fate. People do riskier things every day. I myself have done much less controlled things in daily gymnastics training. Maybe the jump with my eyes blindfolded could even have succeeded if I had focused more on the routine performance of the exercise. But it's boring to think about that now.

Pozzo di Borgo: I'm speaking for myself now, not for Samuel. I engaged in a very dangerous sport, paragliding, a high-risk sport. Our society encourages this sort of thing. We seek that feeling of strength, the extreme experience. And, in fact, you do think of yourself as immortal and indestructible. But the search for that feeling of strength, and the belief that we are indestructible, these are absurdities of the modern age. An accident like this puts things back in perspective, sometimes a little brutally.

SPIEGEL: Do you keep up with advances in spinal research, in the hope that you'll be able to walk again?

Koch: I'd like to preserve the hope of being able to walk again one day. But I don't spend every day obsessively searching for results of the latest research. When Philippe signed a copy of his book for me, he wrote: "Stick in the present!" For the time being, I'm living in the here and now. It isn't easy, because you face a fundamental question: Do I invest a huge amount of time in training, in optimizing my condition, or do I live completely in the present and allow the physical to run its course? At the moment, I'm trying to develop a mixture of the two.

Pozzo di Borgo: Although Samuel is disabled, he's also one of the greatest athletes around. He has extraordinary discipline. He's a champion. We paralytics are champions of immobility. We are forced to display tremendous discipline. I've been doing exercises every day for 19 years, and I have to be very disciplined about my nutrition. This is absolutely necessary to be able to sustain yourself and survive.

SPIEGEL: Is the hope for a cure, or at least an improvement, important to you, Mr. Pozzo di Borgo?

Pozzo di Borgo: I don't believe that I'll be able to walk again one day. When Christopher Reeve, the actor who played Superman, became a paralytic he said that he would be able to walk again in five years. He didn't make it, and he disappointed a lot of people, especially the disabled. But he also generated hundreds of millions for research. Samuel could very well be part of the first generations to benefit from this research. In nanotechnology, for example, they're working on the development of exoskeletons, and on conducting impulses directly from the brain to the muscles.

SPIEGEL: Do you welcome any form of research?

Pozzo di Borgo: I was once offered a robot that would feed me. They came to the hospital with the machine, and to annoy them I said: "I only eat peas." Of course, the peas never made it to my mouth. Then I asked the people: Who exactly placed the plate with the peas on the machine? The woman from the kitchen did it, they said. Then I said: I prefer that woman over the machine. Technology shouldn't be allowed to isolate the disabled, and it can't be an excuse for healthy people to say: We gave you a machine, and now you're on your own.

SPIEGEL: You once expressed the wish: "Pull the plug on me! Just don't ask anything more of me. I don't have any strength left." What sort of a moment was that?

Pozzo di Borgo: In the first year, there's almost always a moment of discouragement. But in my case the real low point came much later. I only felt truly disabled three years later, when my beloved wife Béatrice died. With her death, I suddenly became lonely, and loneliness is the worst thing of all. I also know about a lot of people who aren't in a wheelchair and commit suicide, because they're very lonely and they haven't found a purpose. It's almost always the others, our fellow human beings, who give us a purpose. That's why my therapy concept is not to be alone.

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kewlo 08/05/2012
1. Not to blame?
Wer gelobt wird, weil er so "gut" sei (wenn alles gut geht), sollte ebenfalls kritisiert werden, wenn er (denn schließlich bestimmt er das Geschehen in der Welt, jedenfalls nach manchen Leuten) böses tut. Gelobt werden für das, was gut ist, aber vor Kritik verschont werden, wenn etwas böses passiert, ist kaum objektiv und nur durch Dummheit oder blindes Glauben zu entschuldigen.
kewlo 08/05/2012
2. "If There Is a God, He Is Certainly Not to Blame"
In that case, he should also not be praised for the good things that happen in this world. Either there's responsibility for good AND bad, or for neither.
Mimi 08/07/2012
3.
Excellent interview Markus. These two gentlemen are inspiring, their courage undaunting, their grace and acceptance of life's unexpected turns is something I shall always remember. Disability is not an identity nor should it diminish a person. Everyone deserves respect and love to some degree.
shadymik 05/14/2017
4. Thank you
I would like to thank and congratulate Mr. Markus Feldenkirchen for a superbly conducted interview. It gave great information, insights, and perspectives from two people put in extremely challenging circumstances. -Mikhail (India)
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