Walk of the Centipede

Frank and Jay, Saturday October 17: Maybe you need the adversity Frank: The last time I got on my stomach was this morning. As the nurse left, I said, “Please check up on me regularly.” She said, “Okay”. Then she left. After about ten or fifteen minutes, I started getting nervous that the buzzer was slipping out of my hand; my mouth was on the mattress, so I rang the bell. No one responded. I started getting afraid, not because I was in danger, but what if I did get in danger? What if I needed help? So I put the light on. No response for 15 minutes, 20, 25 minutes. I couldn’t even tell what time it was, actually. Jay: But it felt like 25. Frank: So then I called out for help and no one responded. I heard some woman in the next room repeating something; no one was paying any attention to her. Some guy in the room across the hall was asking for a priest. Another guy was just talking to himself. But no nurses, no nothing. It was Kafkaesque! I eventually yelled out, “CAN ANYONE HELP?? ANY ASSISTANTS OR NURSE AROUND?” The woman was saying she was wet, she needed a nurse. Which she says all the time, and no one pays any attention to her. Then I realized, (chuckles) there’s just a void out there. There’s nothing there, with all these people asking for help, asking for a priest, asking for anything! It went on for a long time because, finally, when the nurse, Cathy, did come in, I had been on my stomach for forty-five minutes. She said, “I’m sorry, but I went walking down the hall and a patient called me and I got tied up.” Which always happens. Jay: It’s like you were invisible: You thought you were yelling and no one could hear. Or else they were deaf. Very scary. Frank: I don’t know what to do about that. I don’t think I should be left alone when I’m on my stomach. The other story was the walking today, and that was even with my arm in such bad shape. (from being wedged underneath him while being weighed that morning) After that incident I didn't think I'd ever be able to walk today, which really upset me because walking depends on your two arms being on the walker. Nevertheless, I was going to try it, so I got on the walker. For the last three days I had been walking, but I was not coordinated. My body did not know what the therapists wanted me to do. Whenever I tried to do what I thought I should do, I struggled and nothing would happen—my feet wouldn't move. But somehow we kept on walking for those three days and then today, somehow, my body had some insight and I suddenly started doing a bunch of things. I started walking, coordinated— Jay: Really! Frank: —I mean it looked awkward but it was— Jay: —there was an inner coordination— Frank: —I started doing the right thing and the foot started going forward and then I would lean over and the other foot would go forward and then I would lean over and the other foot would go forward (laughing). It was fucking crazy, and I suddenly started getting the beginning of a sense of balance, and they did not have to keep on telling me what to do. Jay: Now, were people holding on to you while you were doing this? Frank: I was in the hall with the walker; there was a therapist in front of me and one in back of me. The one in back of me was continually remarking , “You know I'm hardly touching you.” The three days before that, there were therapists around me and struggling with me, pushing me this way and that way and trying to get me to do the right thing. Jay: What’s interesting is that that comes after the trauma of no one hearing your call for help. And that time you sat up without any support was also after the trauma of nearly flipping out of the chair on your head. Frank: Yeah. Jay: So, I don’t know whether that’s just happenstance or whether (chuckles) …the tension of that, and then relaxing. It’s interesting. Frank: Interesting and scary! (laughs) (Returning to the uneven pace of his progress): At the same time, I finally got control of my bladder. My hands are terrible; my arm is terrible. (laughs) And I’m walking with rhythm! I can’t make sense out of it! Jesus Christ! You’d think I’d steadily go on towards getting some stuff back. Even if it’s slow. Just proceeding to do more with my legs and, eventually, more with my hands. But now my fucking arm went out and my shoulder has to go fucking crazy! Jay: And you’re getting more pins and needles in the shoulder? What is the sensation? Frank: It’s just a mess. The doctor came in yesterday and said he thought I had a pulled muscle in my shoulder. They took x-rays to find out whether there’s anything broken, or out of place. There may be something wrong with the socket. Part of that is due to the fact that the muscles are weak and are not holding it in properly; therefore these little traumas or jolts from being turned in the bed or weighed pull it out, and the natural muscle tendency to pull it in isn’t working. If my arms were okay, it would be nothing. It somehow strikes me that some kind of mystical business is going on when I make all this progress and can stand up, and at the same time my arm really seems to be going under. Jay: It seems like the more adversity there is, the more progress you make. Frank: Maybe you need the adversity. Or maybe if I didn’t have the adversity, I’d make even more progress. Jay: That’s right. (laughs). Two very different frames. Frank: Bruce [a colleague] was here last night. I really was in terrible pain, both my backside and my shoulder. But I didn’t show it. There were a number of people in the solarium, I forget who was there. It was all very pleasant, and yet I was miserable, especially in my backside. Jesus, it felt like piece of steel—hot steel—was on it, wow! So I finally told Aura, “I guess I’ve got to get in bed. I don’t know if it’ll be any better, but it can’t get any worse.” So I came [back to my room]. I was holding it all in. And Bruce came in. Aura started dismantling the chair. I gave her some instruction. Then she made fun of it, did something sarcastic, like when you tell someone something that they already know. Jay: Um hmm. Frank: Like you’ll do with your wife or your kids, and they’ll look at you and be disgusted that maybe you didn’t have faith in them or something. She combated my telling her what to do. Ordinarily that happens all the time, and it goes off our back. But I just fell apart (cries). I told her I couldn’t fight her. So she kind of consoled me. Bruce witnessed that, and he suddenly saw the other side of the experience. I realized that a lot of people have never seen that, because I’ve hidden it from them or it just didn’t come about when they were here. I was glad he didn’t walk out; some people would have. He stayed and he, too, consoled me. I got back in bed. Calmed down a little bit. But I’m wondering about the fact that it is pretty tough stuff. Jay: Most people know, from their own pain—not that it’s been the same as yours. Recovery from anything is not a simple thing. I go back to the experience with Peter [his son’s death]. There would be days when I’d be up and days when I’d be thrown right back, as if I were starting all over again. I can look back and see a recovery process, but that wasn’t what I experienced at the time. It engulfs you. Frank: (softly) Real pain. *** Frank: I’ve been here almost. five, six weeks, Jesus! I guess I thought five or six weeks ago in five or six weeks at least I’d be comfortable. I can’t believe that I’d thought I’d be like I am now. And yet, I don’t think I could believe that I’d be walking. (laughs) Jay: Yes. Frank: I couldn’t believe I’d be as far behind and I couldn’t believe I’d be that far ahead. (laughs) Jay: Part of the pain comes from the expectations of where you’re supposed to be. Frank: And, also, part of the exhilaration.