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Frank Garfunkel, dynamic teacher, activist, and sports enthusiast, slammed headfirst into the wall of a squash court. Suddenly a quadriplegic in a rehab hospital, he found himself facing the existential absurdity of total helplessness. Unable to write about his experiences, he ...
Frank Garfunkel, dynamic teacher, activist, and sports enthusiast, slammed headfirst into the wall of a squash court. Suddenly a quadriplegic in a rehab hospital, he found himself facing the existential absurdity of total helplessness. Unable to write about his experiences, he documented his ordeal in a series of probing conversations with longtime friend, Jay Clark. Ironically, Frank, a professor of special education at Boston University, devoted his career to waging battles for the rights of the disabled.
Fate catapulted him into the greatest challenge of his life.
In twenty transcribed conversations, Frank spoke with Jay about a neurological system in chaos, "You're operating a puppet, and the puppet is you." Following a three-month hospitalization, Frank returned home, relieved to be in familiar surroundings but facing endless attempts to regain control of his "Everest/Death Valley" life. His conversations with Jay reveal daily encounters with vulnerability, bewilderment, and depression but also with laughter, gratitude, and love. Walk of the Centipede is the story of a fiercely independent man faced with utter dependence.
Jay: Well, we're finally doing it after all this time.
Frank: All the words that I have been spewing out the last four weeks and two days, what's happened to me, what's happened to the people around me-and yet I was unable to write about it because I don't have the hands to write, unable to dictate because I just didn't have the will. One way is to talk with you, Jay, about certain questions or issues that seemed to be quite important.
Jay: It really feels that part of the healing is talking about it, not only for you but for everybody else, for people who may listen to this or read it in the future. Just talking with Aura tonight, I realized that the staff in the institution here don't know what this experience is like.
Frank: And people who go through the experience forget it. So that they can live with themselves. They forget what the nights were like, what the waiting and waiting and waiting was about. They forget about the pain, the, at times, hopelessness of it. Even my first week at the [medical hospital] is a total blur now. I remember bits and pieces: nurses; and the bed; and trying to get another bed because the first bed was so uncomfortable. And coming to the realization that it was not the bed at all, it was that my muscles had taken a trip, an acid trip, and were confused. Some weren't working, some were partially working. It was like having cement blocks, steel bands around my stomach, and pieces of wood along my spine, none of which had anything to do with reality.
Jay: Sounds like when you first came to the hospital, you expected the changes could be made because they were external to you, and that part of the settling in was realizing that some of those conditions were internal. There was confusion about where changes could or couldn't be made.
Frank: I remember the first reaction I had when I was still on the squash court, recalling times when somehow my arm would pop out and suddenly feel again. I was waiting for this pop or this feeling to come back, or the temporary shock to disappear, and I would be whole again. Then it became clear that I wasn't whole, I was a mess. Then I didn't know whether anything was broken. Somehow I have a memory of a broken neck figuring into it. It was scary, painful, and mysterious all bound up into one fused blob.
Jay: (noticing Frank trying to reach the pad that had slipped off his elbow) Do you want your elbow covered?
Frank: This one? Yes. Some of the overriding feelings I had throughout this had to do with the strangeness of different culture, different country. When I watched television, I would always be surprised when I saw Boston weather or a Boston traffic report or Boston sports. It was like I would be in some foreign country, in Yugoslavia, and suddenly I would see a Boston traffic report. It didn't make any sense to me.
Jay: Even now?
Frank: Yeah and when I'm just gaining consciousness or dozing I see the Bunker Hill monument and wonder what the hell it's doing here. I get the idea that I'm in some big building in some strange city in some strange country, that I don't belong here. The people are different. I guess this is the same thing as when people talk about the culture of disability, that it separates, it confines, it isolates and works against rejoining or becoming again part of whatever you were a part of before it happened.
Jay: It's really striking to hear that that is your personal experience, over and above whatever the institution does either to include or not include you as a person. The institution can help to make you part of the world or exclude you from it.
Frank: But I guess that's the question: what are the things that go towards isolation and separation, temporary or permanent, to people in here, and what are the things that really encourage one to be part of whatever one was doing in the community in the life outside. I can think of the fact that it is easy to come and park for free here as being an integrating factor. I can think of the fact that when you get here, even though they have visiting hours, I have never seen anyone be asked to leave at any time. On the other hand, the fact they have a telephone service where you really can't call out is an isolating factor. Furthermore, if someone calls you and the phone rings and you don't or can't answer it, no one does, and that's the end of it. So they have a mixed system. Some parts contribute to making it easy for visitors to come and stay, and others make it very difficult to maintain contacts.
Jay: There is a sort of schizophrenic quality to that: on one hand inviting you to be part of the community of friends you have, but on the other hand, this business with the phone.
Frank: One of the biggest things that happened to me, since I have practically no use of my hands, is that I became totally dependent on people for everything: eating, dressing, moving my body around my bed and brushing my teeth. There are a lot of things that my hands are good enough to do if the right equipment were here, the right switches, the right paraphernalia. But they weren't here. None of it started to appear until either I had it brought in from the outside, like my telephone, or I made the point to the occupational therapist. "Look, I can't turn the television on and I can't adjust it." Then she worked on it and eventually put the switches in such a way that I could work them. I couldn't raise myself in the bed or turn my light on or off. Unless I got someone into this room or someone was with me, I had to live with whatever it was. That was strange; it meant I couldn't control anything. I couldn't control my life as it was.
Jay: You were a stranger to yourself in some ways, just from both the physical and the emotional nature of the experience. But you also arrived here as a stranger to them. With negotiation, fighting, teaching and dialogue that estrangement has reduced itself to some extent, but it's in itself remarkable that you arrive here a stranger to the organization. You could say that you are not like most of the people here in terms of the nature of your problems but still -
Frank: -but neither is anyone else. Everyone is so different here, people who are amputees, each one of them has totally different issues from the next. All of the spinal cord cases, maybe eight, ten, twelve people-to take all of them and lump them together is maybe medically or anatomically valid, but it certainly is not psychologically valid. People who have had strokes, again each one is different. But they use medical designations and lump them together on floors; the stroke victims on one, spinal cord on another, a pain floor, a pediatric floor, and these distinctions are really very artificial.
Jay: They're just like any other label.
Frank: Yes, they serve a medical purpose; they don't serve a psychological or cultural purpose.
Jay: Well, they serve a psychological and cultural purpose for the organization, which has a need to maintain its stability in the face of the idiosyncrasies of the patients who come in.
Frank: Yeah, they have what they call social groups on this floor and I never have gone to any of them, they don't seem particularly appropriate. I walk [sic] into the social group and there are people who have different needs and different interests. But there are people in this building who I would find very interesting to talk to. I accidentally met a lawyer on the fourth floor, and a professor on another floor; there are people in this building who it would be natural to get together and talk with. It would be natural for them to be treated in a similar way, as people who are continuing their careers, who have certain needs, like reading; but they are all separated because one has had a stroke and one has a spinal condition, and nothing is done to compensate for that.
Jay: In other words, the medical distinctions prevail rather than those that could make a real difference in terms of the social, emotional, cognitive or other aspects of people's recovery.
Frank: Well, say for medical reasons there is a specialist in spinal cord injuries on this floor. That means you're going to see that person every day and have access to that person anytime. I found it to be a great advantage that such a physician is on this floor; she gives me her time whenever I need it and she's always available and I don't have to go all over the building to find her. If the other physicians are doing what she is doing, they could really survey their patients and find out a lot about them, what their interests are: whether they play chess, are readers or have an interest in computers or have common intellectual, professional or business interests. They could give people an opportunity to know who else is here, who you might be able to talk to. But nothing like that is done.
Jay: As you describe your experience it has physical overtones, yes, but the predominant ones are existential. They're ones of where you belong in the world-
Jay: -and they are crucial to survival to survival mentally and emotionally. They are also crucial to recovery. Key parts of your survival are idiosyncratic but the staff are not reaching out to listen to that. Yet that seems to make a powerful difference in terms of what does one do when one is disoriented. You probably have more people visiting you than ninety-nine percent of the other patients here. They have been a vital source of life flow for you. But what does someone do who has one or two visitors and whose life or death almost, is going to depend on that.
Frank: What comes to mind, going back to your statement about the schizophrenia of the place, is that most of the staff here are focused on the physiological, the anatomical, and the neurological ingredients of cure or not cure. You will get better if your body works right, if you get the right physical therapy, the right medicines and maybe the right surgery. They talk about motivated patients who really want to get better, who work hard to get better and are looking for more therapy, but I think there is strong aspect of the belief system here which says, 'yeah, that's good to have motivated patients, but what's really at issue is neurological, anatomic, physiological things'. This psychiatrist who I've met seems to represent a minority view that part of the treatment is going to be motivation. It's going to be a belief in being able to get better. As you look closely at the place, there's all kinds of evidence of both things going on at the same time.
Jay: It seems to me that the medical model, which is what you are describing, is the linear model; it's the traditional, western, find the quickest route from-A-to-B, logically based, data based to some extent. But it's different from a systemic approach which says that there are many factors that influence an outcome. This latter approach has a more speculative, exploratory quality. Do you want something?
Frank: I just want to turn around a little bit.
Jay: I think that linear and systemic mentalities represent radically different ways of looking at the world. The way the hospital looks at it seems to be that other factors may influence a patient's recovery, but that attention to them must not undermine the central concern, the physiological care of a patient.
Frank: Yeah, that's illustrated by the fact that you don't participate in decisions, you aren't presented with options. As a matter of fact, I asked one of the occupational therapists what were some of the controversies in her field. She didn't know what I meant by that. Now I don't know, but I could guess that there are some very different philosophies in occupational and physical therapy, as well as in all kinds of treatment aspects for disease, for spinal injuries. And yet they're not living with that controversy; they've simply been taught in the university, in some hospitals, and in some clinic someplace what good procedure is. To think that they don't know what the controversies are is to suggest that they would not know how to present options to you. Therefore those meetings with you are unnecessary. (chuckles)
Jay: If they sat down and talked with you, they would find out how vital controversy is to your way of testing a cognitive or a social system. If you don't find controversy, you immediately smell a rat. So here they are, presenting you with simplistic, non- controversial models. You can trust the staff, but there's a certain level at which they can't communicate with you.
Frank: Right, that's a big difference. That's what separates us. And when we introduce controversy into it, it turns into confrontation and a rejection of them. Not of their ideas but of them as people, as professionals.
Jay: While that may be so, it sounds as if some of the confrontation has led to real dialogue, some discussion of how to handle you.
Frank: Yeah, most recently I had a computer I was using and it turned out I couldn't use the computer unless the therapist was there. And yet I knew more about how to use the computer than anyone I met here. They told me it was a rule; therefore, I couldn't use the computer late afternoons, evenings, weekends or during the day when I had down time. So I raised it as an issue and immediately they turned around on it, and said, "Well, there's another computer you can use and we'll give you permission to use that anytime when it's not being used by anyone else". It's on the eighth floor in a really nice space. So, they quickly gave in on that.
Jay: They gave in, but they did it by finding another computer. So they didn't have to break the rule.
Frank: Right, right. Of course, when I get to the computer, it's not at all equipped. It's a computer for able-bodied people. In fact, someone has remarked to me that this is a hospital for able-bodied people. (laughter) There's no way I can press the elevator buttons to go to any other floor. And I've tried every which way to press those buttons. All their bed switches- can't use any of them because they don't lend themselves to someone who has the kind of hands I have.
Well maybe, going back to my earlier point, everyone is so different in so many ways that if they tried to provide for individual differences it would be astronomically expensive. As you walk through the halls and find out about who is here, it's very striking that they will take almost anyone who has had a serious injury or a serious disease, anything that doesn't require an acute care hospital. The person can be six, sixty or ninety; there is a ninety-one year old man who is being rehabilitated. And there are many patients who, much of the time, refuse to talk to the therapist or have therapy.
There's one guy who doesn't speak English, he just speaks Polish. He has burns almost all over his body. How do you provide for such an array of disabilities? So, in that sense, I can bemoan the fact that they don't provide for me, but on the other hand, I can take a step back and appreciate that, at the level of their thinking, what are they going to do? Provide a Polish interpreter for the Polish guy, and buttons I can handle, and things that this extremely diverse group of injured, diseased and disabled people need? Now, I would think that there might be certain things they can do which would cut across all of these kinds of things.
Jay: Yeah, that's what I was going to say. I think there are categories of response they could make to the particular needs of people without it being too costly. I have a hunch that as a result of this experience you are going to try to sort out those categories and help an institution like this look at innovations to assist patient recovery, the lack of which might have more to do with resistance to change than technology or cost.
Excerpted from Walk of the Centipede by Jay Clark Aura Sanchez Garfunkel Copyright © 2010 by Jay Clark and Aura Sanchez Garfunkel. Excerpted by permission.
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