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Sense-Making Instrument

Power, Control, and Personal Autonomy
in the Long-Term Pediatric Health Communication Context:
A Sense-Making Perspective

by
Linda Wheeler Cardillo
cardillo.1@osu.edu

PURPOSE:
For this first step in an expected long-term project, I wanted to apply Sense-making Theory and Methodology to a study of children/adolescents with chronic health conditions and their interactions with their health care providers and their caregiver/advocates. I am interested in exploring issues of power, control, and autonomy in this context. How is the adolescent patient affected by control--or loss of control--over his/her body and over decisions made in regard to his/her health? How is the young person affected by different communication patterns (e.g., effects of talking to or about or over the child) and content (openness of discussion in the child's presence about his or her condition, diagnosis, and prognosis)? What kinds of communication on the part of parents and health care providers reduce or increase the trauma and pain and lingering effects of difficult procedures?

The interview structure and interview transcription below form the first big step in my project where I am using the Sense-Making interviewing structure to gain insight into the adolescent patient's experience. Specifically, what is reported here is the result of my conducting a Micro-moment Sense-Making Time-Line interview with one adolescent with a chronic health condition. For my long-term project, I will, of course, be bringing to bear my reviews of literature in the communication and health care fields relating to health care provider-patient communication (especially in terms of issues of patient power and control and autonomy), communication in the pediatric health care context, and provider-parent-child patient communication.

PUBLISHED IN:
Unpublished at this stage.

COPYRIGHT AND CITATION INFORMATION:
© Cardillo, Linda Wheeler 1997. The material on this page may be cited as:
Cardillo, Linda Wheeler (1997). Power, control, and personal autonomy in the long-term pediatric health communication context: A Sense-Making perspective. [On-line]. Available:
http://communication.sbs.ohio-state.edu/sense-making/inst/icardillo97study.html

MATERIALS PROVIDED ON THIS WEB PAGE:
1. The interview guide
2. A sample interview

SAMPLE USED IN STUDY:
The single interview below was obtained from a 17-year-old female adolescent who has been treated for acute lymphocytic leukemia for three years. The respondent is the daughter of a professional couple, living in a suburban neighborhood in a midwestern US city.

THE INSTRUMENT

Interviews introduction:
I'm interested in how young people with long-term health conditions feel about their experiences during doctor appointments, hospitalizations, tests, treatments, procedures, any times when they are interacting with the health care system and health care providers. I'm interested in how kids feel about how their doctors and other health care providers talk with them and with their parents, how much control kids feel they have or don't have in these situations and how they feel about that. I'm especially interested in how young people feel about themselves in these situations.

Think back over all the times you've interacted with doctors, nurses, technicians, and other health care providers. I'd like you to choose the time that stands out in your mind as the worst experience you can remember. I'm going to ask you to tell me what the situation was, and then I'll ask you to explain to me what happened from beginning to end--what happened first, what happened second, and so on. What did you and others say, do, feel, think? What things just happened? You can think of this as sort of showing me and telling me about a series of photographs or individual frames in a movie. I'm going to write them down so we can keep track of them, because we'll be coming back to look at and talk in more detail about each snapshot later.

To start, can you just briefly describe what the situation was?

1. [micro-moment time-line steps]:

Now, think back over the situation and tell me step-by-step what happened in this situation--what happened first, what happened second, and so on?

[individual steps recorded on blue notecards]

[show and explain Sense-making Model]

We're going to go back and look at these steps, these photos, in a very particular way. I'd like you to remember back to each step, thinking again about what happened, what you and others who were there said and did and felt and thought, and focus now especially on what questions and confusions you had, what emotions and feelings and physical reactions you had, what ideas or conclusions or understandings you came to, what hurt and what helped. This might get to feeling repetitive, but it's like you're taking me into a movie and showing me every detail. If I ask you something that you think you've already answered, just say so.

2. [triangulation for each step on the time-line]:

A. [anchor each step]: Let's see, now, at this point when [repeat her description of the timeline step]......did you have any questions or confusions? What were these?

Any other questions or confusions?
[record questions, confusions on yellow notecards]

B. [anchor] At this time, did you have any feelings or emotions? Any physical reactions? What were these?

Any other feelings, emotions, or physical reactions?
[record feelings/emotions and conclusions/ideas/understandings on pink notecards]

C. [anchor] At this point, did you come to any conclusions, have any ideas, arrive at any understandings? What were these?

Any other conclusions, ideas or understandings?
[record feelings/emotions and conclusions/ideas/understandings on pink notecards]

[repeat #2 for each step on the time-line]

3. [Then go back to each time-line step]:

A. [anchor in time-line step]: At this point in the situation, you said you had certain questions or confusions. We're going to talk now about the four most important of these questions, one-by-one.

[for each of the four most important questions/confusions]:

What led you to have this question?
How did this question or confusion relate to your life?
How did this question or confusion connect with your past: your life before this or things that had happened recently?
How do you see this question relating to your future?
How important was getting an answer to this question?
Did you ask the question out loud or to yourself?
Did you get an answer to the question or confusion?
[If yes]:
How hard was it to get an answer?
Was the answer partial or complete?
Did the answer help, or did it hurt/hinder? How did it help or hurt? What leads you to say that?
[chaining]: And how did that help you? Hinder you?

[If no answer to question]:
Was there something that blocked you in getting an answer to your question?
In an ideal world, if you could have waved a magic wand, how would you have been helped? What leads you to say that?

[repeat for four questions/confusions]

B. [anchor in time-line step]: At this point in the situation, you said you had certain emotions and feelings and physical reactions, and had some conclusions, ideas, or understandings. We're going to talk now about the six most important of these, one-by-one.

[for six most important conclusions/understandings/emotions/feelings]:

What led to this conclusion (understanding/emotion/feeling/physical reaction)?
How did it connect to your life?
How did this (emotion/feeling/conclusion/understanding) relate to your life before this?
How do you see it relating to your future life?
Did this (emotion/feeling/conclusion/understanding) have consequences or impacts?
Did it help or hurt/hinder you in any way? How did it help or hurt? What leads you to say that?
And how did that help and/or hinder you?
In an ideal world, if you could have waved a magic wand, how would you have been helped? What leads you to say that?

[repeat for six most important emotions/feelings/conclusions/understandings]

4. Now, let's see, you talked about [people]. Let me check to be sure. You mentioned [doctor, nurse, mom, dad, etc.]. Were there any others that you can think of or that I'm forgetting?\

Did the presence of any of these people help and/or hinder you in any way?
How did that help (or hinder) you?
What leads you to say that?
Anything else?
Did any of these people help you to get your questions answered, or hinder you from getting your questions answered?
How did that help or hurt you?

What leads you to say that?
Anything else?

5. Now, just one last question: can you tell me led you to choose this situation as your very worst health care experience, compared to any other bad experiences you might have chosen?


TRANSCRIPTION OF THE INTERVIEW (dated Martch 5-6, 1997)
TAPE 1, SIDE A

I (interviewer): I'm just going to remind you of what we've already talked about. . .

R (respondent): Uh huh.

I: . . . um, what I'm interested in looking at here.

R: Right.

I: I'm especially interested in how young people who have had to deal with chronic illnesses, serious long-term kinds of illnesses, feel about their experiences with the health care community. . .
R: Um hm.

I: . . . with doctors, you know, all their communication, their interactions with doctors, nurses, you know, tests, procedures, treatments, any time that you've interacted with health care providers and the health care system. Um, I'm interested in how you feel about your doctors and other health care providers and how they talk with you and with your parents; um, how much control kids feel that they have or don't have in these situations and how they feel about that; um, and I'm especially interested in how young people feel about themselves in these situations.

R: Okay.

I: So, I asked you already to think back over all the times that you've interacted with doctors, nurses, other health care providers, and to choose the time that stands out in your mind as the worst experience that you can remember, something that really stands out as a bad time.

R: Mm hm.

I: So, now I'm going to ask you to tell me what the situation was first, and then I'll ask you to explain to me what happened--sort of like you're showing me, running me through a movie, from beginning to end, what happened first, what happened second, what happened next; what did you and others say and do and feel and think at these different times, what things just happened. Um, so, again, think of it as showing me individual frames of a movie or photographs, and you're describing all these things to me and, um, you know we're just going to really take our time and really look at these different pictures carefully and in a very particular way so that you can really think back and I can understand what was going on and how you and others were thinking and feeling and acting and what everybody said. So, to start with can you just briefly tell me what the situation was before you go into a more detailed description of it?

R: Well, there were two really bad experiences that I had.

I: Okay, why don't you just start with one. . .

R: Okay.

I: . . . and if we have time, we'll talk about another one, okay?

R: The one was with an intern named [xxxx], and he was just extremely rude. He did not show compassion, he did not. . . he was just the opposite of what you would expect a doctor to be, I mean the complete opposite. I don't even know why he was in the medical profession, because his attitude was just terrible. And my mom saw it, the nurses knew, before even mentioning his name, the nurses would know who you were talking about, he was so bad.

I: Okay, and can you just say, like, what was the time or the situation, what was going on when you had to interact with him.

R: It was at the very beginning when I was first diagnosed. And he came, I needed to have a spinal tap, and he came in and, immediately, this is, it was early in the morning, I had just woken up, and he comes in and he's like, "Roll over, I have to put this cream on your back. I'm late for rounds." Did not tell me why he was putting cream on my back, did not explain anything! Me, and my mom, were pretty upset, especially me, because I was terrified; I had no idea what was happening to me. And, um, so we called one of the nurses in, and we're like, "Why did this guy just come in and tell me all this stuff?" And she's like, "Oh, you're having a spinal tap." And I didn't know what to do, but my mom's like. . . I guess he was supposed to perform the spinal tap on me and we didn't want him to because he, the way he presented it was terrible. And so. . .

I: Now, just remind me again, when he came, he didn't say spinal tap, he just said, "I have to put this cream on your back, and roll over."

R: Yeah, he did not tell me a single thing.

I: Okay.

R: And so my mom talked to my nurse practitioner, who was basically in charge of my case, and we told her the situation and she's like, "I will do the spinal tap. You don't have to worry, I'll do it; I'll take care of him." So she did it in my room, which was nice, because usually they take me, take you to a treatment room, but since my back hurt too much to go, um, she did it right there on my bed, which they usually don't do.

I: Okay, so your mom talked to the nurse, and the nurse said, "Don't worry about it. I'll do the spinal tap, and I'll do it here in your room."

R: Yeah.

I: Okay.

R: And then, he came back, and I'm pretty sure he was upset that he wasn't going to do it, and um. . .

I: Was this before or after you had it?

R: This was after I'd had it, he had come back, and he's like, "Okay it's time." And we're like, "I'm sorry, you're not doing it."

I: Okay, so the intern came back in and he was upset that already, the nurse had done it.

R: Yeah.

I: Okay.

R: And that was basically it with that experience, but then I had a later experience with the same guy, like, oh, I think like a, later in that day I think he came back. And he had to draw blood from my arm. Well, my bed was up against the wall. And, he, you have to take blood from my right arm, because it's just the easiest, I mean, it's not as painful for me. But my bed was up against the wall on the right side. So, instead of pulling out the bed, away from the wall, even though it was on wheels, he could have done that--he told me to turn around in my bed so my head was where my feet should be, and my feet was where my head should be. And this was at the time when my back really hurting me, and I really couldn't turn around that well, but he told me to do that anyway, so I did it; I'm like, okay great. And all the while I was doing this, I was just thinking to myself, "You're an idiot. Why would you have me turn around?" But, I mean, I couldn't really say anything because I didn't know, I didn't know what I could do at that time because I was new to all this new procedure stuff. And, um, so he's trying to take my blood and everything, but I have rolling veins, which is extremely hard (laugh) to get blood from, and he kept poking and prodding and everything, and he could not find a vein. And finally one of the nurses came in, and she's like, "[respondent's name], you have to go down and get an EKG." And [xxxx] is like, "No, we've got to do this." And the nurse is like, "No. She'll, you'll get the blood taken when she comes back." So I go down and get the EKG done; and then I come back, and he's there waiting for me. And while I was at the EKG, I think my mom talked to one of the nurses, because a nurse was also in there waiting to get my blood taken. And so, they pulled the bed, the nurse pulled the bed out from the wall to take my blood. And she found a vein, and I was, and my blood was dripping out very slowly because my blood was basically full of leukemia cells still at that time. And so, the nurse told [xxxx], she's like, "Go get a 3 cc. vial, like three of those vials." And so he goes and he gets them, and he goes and tries to find them. He comes back with like 6 cc.'s or some other vial that's not the one they wanted. The nurse is like, "Go, get 'em and don't come back until you find them." So he comes back, and he was just in a VERY bad mood when he came back, and it . . the way he was just was like terrible. I mean, he was still completely rude. And I will never forget him because, basically, when, a couple days later, my arm, where he tried to take the blood from, was so black and blue it like did not go away for weeks, because he had messed, he had just hurt me so bad there. And, basically, he scarred me for life because now I really don't trust people taking my blood. I only let certain people do it. And so, basically, because of him, I will not let an intern, basically, look at me without a doctor in the room. If the doctor's in the room, fine, yeah, they can do it. But if there's not, I have a very, I have a problem with it because of him.

I: Okay, so when he came back, the nurse had told him to go get a different needle or a different vial or . . . ?

R: Yeah, a vial.

I: A different vial. And when he came back, then he continued trying to get the blood, then?

R: Yeah, and then the nurse is just like, "No, I'll do it." And so, finally, the nurse got it. She was the one who finally got it. He was just having too much trouble with it. And he's still there, too, which makes me wonder. Because, every now and then, I'll see him walking around, and I'm just like, "You don't know me, but. . . you really hurt me" . . .

I: Mm hm. . .

R: So. . .

I: Okay. All right. [showing notecards] Now what I have here are a series of steps; you know, these are our little photographs as best as I could, you know, think about the order you told me what happened. Okay. And this is what you told me happened from beginning to end, as far as you see it. Um, okay, just to help you to be maybe, you know to clarify things for you a little bit, [showing Sense-Making Triangle] this is what is called (this is pretty messy writing) but this is what we call a Sense-Making Model in the class I'm taking. It's a particular theory of people making sense of the world and how they figure out how to get over their problems and their gaps.

R: Mm hm.

I: We have situations, so you can picture a situation over here. Everybody, you know, you encounter different situations. So you were in this situation. And then, you can think of, over here, things that helped, you know, ways that you came to understandings or solutions or whatever. This is sort of a bridge: ideas, conclusions, emotions, feelings that got you from here to here. Um, down here is like, gaps: confusions, questions, problems that you had, barriers, you know, hindrances. Um, you can think about things that hurt, um, you know and how those hurtful things related to your past life--your life before this--and your life in the future. And the same thing with helps: things that helped, how they related to your past and your future, and you know, what helped and why it helped and what leads you to say that, those kinds of things. So those are the kinds of things that we're going to be looking at, and as I ask you questions, I'm going to go back and go over all these steps. And I realize that they kind of all go together, but we'll look at them like particular points in the situation.

R: Okay.

I: And I'm going to ask you to focus on each step and think again about what happened at that step: what you and others who were there said and did and felt and thought, and focus now especially on what kinds of questions and confusions you had at that time; um, what emotions and feelings and physical reactions you had, some of which you already talked about, but we'll go over it again. And, some of it will get very repetitive seeming, and if you feel like you've said it already before, just say "I said that." You know, just interrupt me, or say, "I've said enough; I'm done with that part." Think about what ideas or conclusions or understandings you came to, what hurt and what helped. Um, so, again, kind of bear with the repetitiveness of it and think again of it being like a movie or your trying to tell me every detail of what was going on in these different frames. Okay. So, at this point, right here, when you said that you had to have a spinal tap, which you didn't know at first.

R: Mm hm.

I: This intern, [xxxx], came in and he just said, "Turn over, I have to put cream on your back."

R: Mm hm.

I: And that was the first step that you talked about. So, at that point, um, think about what kinds of questions and confusions you had at this point, and I'm going to write these down as well, all right?

R: Okay. Um, my first question was, "What IS a spinal tap?" I had never heard of one in my life. I had never, I had no idea what it was. And my second question was, "If he was late for rounds, why didn't he come earlier?" I mean, it's not, he, it's like he took his, like, the fact that he was late for rounds out on me, which isn't right, because . . . I'm . . . it wasn't my fault, it was basically his fault. And so I was extremely upset about that, I know that. I was very mad that he did not even have the courtesy to say anything.

I: Okay. Any other questions or confusions at that point?

R: I don't think so.

I: Then, at this point, um, did you have any feelings or emotions or any physical reactions at that point? . . . You mentioned some feelings which I didn't really . . .

R: Yeah, I was like, I was angry and upset.

I: Okay, so you were angry and upset.

R: And confused (laugh).

I: Okay. . . All right, at this point, did you have any kinds of, did you come to any conclusions or have any ideas or arrive at any understandings at that point?

R: No, because it was just too new to me, that I didn't know (laugh) what was going on.

I: Okay.

R: 'Cause it was like the second day that I was in the hospital. I really didn't have any clue of what was going on in the first place (laugh), so. . .

I: Okay, so no conclusions or ideas or understandings at that point.

R: Yeah. I was also on a lot of, like, drugs to help like get the leukemia cells into remission so I really also didn't have a clue on what was going on around me (laugh).

I: Okay. Um, what about physical reactions at this point?

R: Not really. Not until he started with the needle thing.

I: Okay. . . All right, so then at the next point you said that, um, your mom called the nurse, is that right?

R: Yeah.

I: . . . and talked to the nurse, and the nurse said that she would do the spinal tap, right?

R: Yeah. It was my nurse practitioner, not one of the regular nurses.

I: Okay, so a nurse practitioner.

R: Yeah.

I: All right. And so, at that point when your mom called the nurse and the nurse said that she would do the spinal tap, um, did you have any questions or confusions at that point?

R: Well, she explained to me what it was at the very beginning because we asked her, we're like, "What is this?" And she explained it nicely to me. And so after that, I didn't have any questions because she had taken care of it; she had answered the question, "What is it?"

I: Okay, so you did come to an understanding or conclusion.

R: Yeah, I finally figured out (laugh) what was happening.

I: So the nurse practitioner explained, uh, what a spinal tap was; explained everything.

R: Yeah.

I: So you knew what was going on.

R: Mm hm.

I: And, so, any other, you didn't have any questions or confusions at that point.

R: No.

I: How about feelings or emotions?

R: I was relieved that she was going to do it and not [xxxx]. And I was scared because it was first spinal tap and I didn't know what it would feel like and stuff, so I was scared at that point too. But, basically, I was mostly relieved to know that someone like her--because she, she was so nice, she was VERY nice, and so I was happy that she would do it; and in my room too, because I really couldn't travel to the other room, I felt so bad.

I: Right. Okay, so you were relieved that she was going to do it; and that was your overwhelming feeling, you were relieved, you were happy. You felt like she knew what she was doing.

R: Yeah. And she had done many of these before, so. . . That's my first question I ask anybody: "How long have you been doing this?" (laugh).

I: Okay. Did you ask her that, at that time?

R: She had said, because I was, she could tell that I was scared, and she said she had been doing these for years, and so, like, "Okay!"

I: All right. Um, let's see. Did you have any kind of physical reactions at this point?

R: Not until she did it. I mean, basically . . . no, I don't think so.

I: Okay. And what about when she did it then?

R: When she did it, it hurt at first because . . . but they had numbing cream that . . . the cream he was putting on my back was numbing cream and so, it doesn't hurt as much. And after awhile you can't feel it, as many as I've had (laugh). By the time you've had them for a couple of times (laugh), they don't hurt at all (laugh).

I: Okay, so it hurt at first, but then it went away.

R: Yeah.

I: Um, any other physical reactions?

R: No.

I: No other feelings or emotions at that point?

R: No.

I: Okay. All right, we'll kind of move from one to the other . . . when she did the spinal tap, it hurt at first. Um, while she was doing it, did you have any questions or anything, any confusions?

R: The only, whenever anybody gives me a spinal tap I ask them, when did they put the needle in, and am I dripping yet, because those are the basically things that I worry about because in a spinal tap . . .

I: Did you at this time?

R: Yeah.

I: So you wanted to know, you wanted her to answer when she put the needle in?

R: Yeah, she asked, I asked her to explain to me what she was doing while she was doing it.

I: Okay.

R: And she did. And then, since in a spinal tap the spinal fluid drips out in a little tube, I just keep asking that question because I'm afraid that, like, if I move, like, it's gonna hurt or something. So I'm usually in a tight ball so that it doesn't, and I don't move whatsoever during it. And then I ask, "Is it over yet?" And I just constantly ask those questions, I like don't shut up until it's over. So.

I: So you asked, "Tell me when you put the needle in," "Is the fluid dripping out?" and "Is it over yet?"

R: Yeah. I was probably crying at that time, too, because I remember I did, I'm pretty sure I did because I was afraid of what it would feel like because I had never had one before (pause). But my mom was there.

I: Yeah. So your mom was there.

R: Yup. And my stuffed animal dog, Katy.

I: And, so, at this point, when this was going on, while it was happening, um, or through this process, did you come to, you know did you have ideas or understandings or conclusions that you reached at that point?

R: I realized they weren't as bad as they sound (laugh). Because, it just sounds so like just ,painful and everything, but it's really not, because of the numbing cream and stuff, so . . .

L : [pause] Bear with me a second, all right? [pause]

R: All right.

I: Sorry. [pause]. These notecards are supposed to help me, but I'm messing up! (laugh). Okay, how about anything else at this point, that you can think of, in the way of questions or confusions?

R: No, not really.

I: And, um, you said that your mom was there, and that was, that helped you feel better?

R: Yeah.

I: You seemed to smile when you said that.

R: Yeah, she was there the whole time. She slept at the hospital; she was always there, so . . .

I: So she was there during this procedure?

R: Yeah. She's been there in all my procedures.

I: And, thinking about what other people were doing and saying at this point, like your mom or anybody else? Can you think of things that people were saying or doing?

R: My mom, I remember, thanked the nurse practitioner for taking care of the situation, because they knew I was panicking, basically, at that time when he had come in, and so, she thanked him for, her for doing it.

I: Yeah. All right, then you said that, um, the next big thing that happened, or the next step that you said, was that the intern came back, and um, that he was angry that the nurse had done it instead of him, right?

R: Yeah.

I: So, at that point, now, the spinal tap was over, at this point, and he came back and when he came back in and he said that, and thinking about that situation, did you have any questions or confusions at that point that came to your mind?

R: No, I was just upset at him, for the way he treated me, because he didn't treat me very nice and I expected to at least have some compassion.

I: Okay, so you did definitely have that feeling of being upset with him.

R: Yeah. And I felt he deserved not doing it, because he didn't take the time to explain what he was gonna do, so . . .

I: Okay. Um, and when you say upset, can you elaborate on what that . . . ?

R: Just mad, or angry at him.

I: Okay. Um, what about, you said you didn't really have any questions or confusions, but you said that you did have this reaction of being upset and angry . . .

R: Mm hm.

I: . . . and you kind of talk about a conclusion that you had too, that he deserved not doing the tap.

R: Yeah.

I: So, what about other kinds of feelings or emotions or physical reactions at that point?

R: I don't think I had any others.

I: Okay. And what about any other conclusions or ideas or understandings at that point?

R: No.

I: Now, you said that later in the day, then, the intern came back to take blood.

R: Yeah.

I: And you said that you need to have blood taken from your right arm, but your bed was against the wall, your right arm was against the wall.

R: Yeah.

I: So, just at that point, before he asked you to turn around or anything, just at that point when he came back in, and he said he was gonna take blood, and you were there with your right arm against the wall.

R: Yeah.

I: What kinds of questions or confusions did you have at that point?

R: I, um, I'm pretty sure I asked him like why was he doing this, because that's basically what I ask everybody, "Why? Why am I having this done?" (laugh).

I: And when you think about questions or confusions, think about them not only what you asked out loud, but what were you thinking.

R: Yeah.

I: Okay, so why is he doing this?

R: Yeah, and why is he back? (laugh). Because obviously we did not like him the first time, what would make him think we liked him the second time? (laugh).

I: Okay.

R: So, that was a big one!

I: Okay, so why is he doing this at this time, and why is he--you didn't know why he was taking blood, he didn't tell you.

R: No, they usually don't tell you why, but I didn't know that because I'd really never had blood taken before, so . . . . Everything was new to me, so I really didn't know. So, basically, everything at the beginning I did ask why, because I wanted to know what was happening, what they were doing to me.

I: Right. Okay, and then you wanted to know why he was back. Any other questions or confusions at that point?

R: No, not really.


TAPE 1, SIDE B

I: Okay, um, you wondered, why is he doing this? And then at that point, you know just when he came in and told you this, did you have any kinds of feelings or emotions?

R: I was upset again (laugh) because he was back, and I didn't want him to be back!

I: Okay, so you were upset again because he was back.

R: Yeah.

I: Any others?

R: I don't think so. Basically, being upset covers everything that comes to mind when I think of him (laugh).

I: All right. Now, next you said that the intern said that in order to take your blood that you had to turn around in the bed, uh, so that he could take the blood from your right arm. So at that point, then, what kinds of questions or confusions did you have?

R: I was wondering why he had me turn upside-down and not pull the bed out from the wall like normal people; and I just kept wondering to myself, "What an idiot! How stupid can you be?!" Because just the way he was acting was just like, duh, anybody would think of pulling the bed out from the wall, except him, obviously.

I: So, you wondered why he had you turn upside-down instead of pulling the bed out, and why was he so stupid?

R: Yup.

I: Okay, what else, anything else?

R: No.

I: Um, and then, so you did that, and what kinds of feelings or emotions or physical reactions did you have then at this point?

R: I was in pain because my back was killing me and he had me turn upside-down, which made it hurt even more; I mean, I couldn't even stand up, I couldn't get out of bed, so basically it killed when he had me roll over. And I was so angry at him for making me do that, because any normal person would have pulled the bed out from the wall, so.

I: So, you were in physical pain. . .

R: Mm hm.

I: And you were very angry. (pause). Okay, other kinds of physical reactions or feelings or emotions at that point?

R: No, not really.

I: And, (pause), okay, all right, then you said that, um, he started trying to take your blood. . .

R: Mm hm.

I: And he was poking and prodding and this seemed to go on for a little bit.

R: Yeah.

I: So, at that point, what kinds of questions or confusions did you have?

R: I was wondering if he could actually do it, and if everytime someone took my blood it would hurt that much. Because he was one of the first--he wasn't the very first, I don't think, but he was one of them, and I just wanted to know if it always hurts that much; so. (pause)

I: So, you wanted to know, you were wondering, could he actually do this?

R: Yeah, because it took him, it had to have been at least a half hour, I'm pretty sure, because [looking at her mother's notes]. . . no, it doesn't say how long. But it was a very long time, and he just kept trying and trying and I'm just like, "You idiot!" (laugh), that's all I could think! Probably some more select words!

I: So you were angry. . .

R: Yeah!

I: And upset.

R: And in pain, because, I mean, having a needle in your arm, and him trying, pulling it out and keep poking, I'm just like, no, stop! But he just, he's like, "No, I have to do this," and I'm like, fine! Because I wasn't going to be like, no, you can't. Like go get--I'm pretty sure I probably did say, "Go get a nurse." And he said no, because whenever somebody can't do my, can't get a vein, I'm like, "Go get a nurse," because nurses have done it more often, so, I probably asked him that question. . . actually I'm pretty sure I asked him that question.

I: So you asked, "Can you get a nurse."

R: Yeah, so she could do it.

I: I'm thinking, too, about, you know, what other people were doing and saying at this point?

R: My mom was getting very impatient. My mom doesn't get impatient that much, but with him, she did.

I: Any other questions or confusions at that point?

R: No.

I: Or feelings or emotions or physical reactions?

R: Nothing. . . yeah it hurt.

I: It was hurting.

R: Yeah.

I: All right. . . and then, you said at that point, was it the nurse who came in and said you had to go have an EKG?

R: Yeah.

I: Okay, and that [xxxx] had to, that he'd have to wait to take the blood.

R: Yeah.

I: Okay, so at that point, then, what kinds of questions and confusions did you have?

R: (pause) None really. I probably wondered if he'd do it, if he'd try again when I got back.

I: Okay, so would he try again when you got back?

R: Mm hm.

I: Any others?

R: I don't think so.

I: And, um, what about feelings or emotions at this point?

R: I was glad I was going to get a chance to leave and recuperate from the pain (laugh) he'd put me through, so . . .

I: Okay, so you were glad to have a chance to get away.

R: Mm hm.

I: Kind of relieved?

R: Mm hm.

I: Any others?

R: No, not really.

I: And, what about, any kind of physical reactions at that point?

R: No, I mean, I was still in pain from what he was doing, because it hurt so much, but. . .

I: And what about confusions or ideas or understandings at that point?

R: No, not really.

I: Okay. (pause). All right, and then next you said that after the EKG was over, [xxxx] came back to take your blood, um, he got needle started but the blood was coming too slowly?

R: No, he didn't even get the needle started; the nurse had to.

I: Okay.

R: Because he kept poking, and I, my mom finally went and got a nurse, and was like, and the nurse was like, "[xxxx], move over." So. . .

I: Okay, so he came back to take the blood, but he couldn't get it, so the nurse came to do it

R: Yeah.

I: And, uh, so at that point, then, what kinds of questions or confusions did you have while this was going on?

R: I was wondering, would she be able to get it? (laugh). Because it took him so long, I didn't know if she could--I figured she could, because she was a nurse and not an intern, and she had done it many a time, but that was basically my question: "Can you do it?"

I: Yeah. Any other questions or confusions?

R: I don't think so.

I: Okay. And, um, what about feelings or emotions or physical reactions?

R: I was happy that she was doing it, because all my nurses were extremely nice. I mean, they were very nice and polite and everything, so I was glad that she was doing it and not him.

I: (pause) Any other kinds of feelings?

R: No, not really.

I: Or physical reactions?

R: Hm, no because I think she got it really quickly, and so it, she didn't have to poke and prod and everything, so it didn't hurt when she did it. Plus, she knew how to do it, to make it not hurt. He hadn't gotten that technique down yet (laugh).

I: Okay, so you saw, one of the things that you concluded or saw was that she knew how to do it, right?

R: Yeah. And he had no clue (laugh). He had no clue about a lot of stuff.

I: Okay. [xxxx] had no clue. (pause). What about other conclusions or ideas or understandings at that point?

R: No.

I: Okay. Um, all right, and then she had sent him to get a different vial? And he came back and tried again, on his own, is that right, or did I get that down wrong?

R: She tried, she got it, and I was dripping so slowly, he had time to go get the vials. I mean, it was, my blood was coming out extremely slow, and they had one vial that they needed more, and so they sent him to go get it.

I: Okay, so she had gotten the needle started--

R: Yeah.

I: But the blood going slowly, so she sent him to get a vial, a different vial and he came back, and she tried again. But did you say he had brought the wrong thing or something?

R: Yeah, he had brought the wrong size.

I: Okay, so he brought the wrong size (pause). Okay, and, um, so then what happened? When he, she already had a needle in, but it was going slowly, and he brought back the wrong size--

R: And she yelled at him, she was like, "Go get the right size, and don't come back until you do!" And so he finally did. He came back with the right size. And I guess they were sitting right there, because I guess one of the nurses went to help him, and I guess the vials were like right in front of his face if he had just looked hard enough. And so, I guess he was stupid at not bringing them back. I don't know what his problem was.

I: Okay, so at this point then, what kinds of questions or confusions did you have?

R: I just kept wondering what an idiot he was (laugh) for being so stupid of bringing back the wrong vial! And I know he was upset, because when, you could tell, in the way when he brought back the wrong vials and they said--you could tell he was embarrassed, because he was, he did that and he was upset that he wasn't, that he was being treated that way, that he wasn't allowed to take the blood and he wasn't allowed to fill the vials or anything, so I think he was upset about that. But I was happy (laugh) because he couldn't do anything (laugh).

I: Okay, so you were wondering what an idiot he was, and you were also happy that he, uh, he wasn't allowed to do it.

R: Yeah. And that a nurse was doing it. (pause). I came to the conclusion that he is stupid and that he is rude and that he should have not started out working with children. He should have started out with adults. And that, I also concluded that no intern, especially him, will ever do any procedure on me, basically, again. I mean, when I have children and they go into the hospital, I will be very cautious with interns with them too, even though (laugh) they probably never did anything to hurt anybody.

I: Let me make sure I have all these conclusions.

R: Yeah.

I: You, uh, concluded that he is stupid; he is rude; he should have started, he should not have started out working with kids, he should work with adults.

R: Yeah, he had no bedside manners whatsoever. But it taught me that when I become a vet, which I want to be, to be polite to the people if I have to tell them something's wrong. I will have the bedside manners, because I know what not to do. And, like all my other doctors had such good bedside manners that I know what to do. So I know that being rude really can hurt somebody.

I: And you said that you know that, you knew that you wouldn't let an intern come near you anymore.

R: No. (pause). I mean, I'll let them like do physicals where they don't have to do anything to me, but I won't let them do anything other than that. I'll let them ask me questions, but that's about it!

I: Any other conclusions or understandings or ideas at that point?

R: I was very happy with the nurses and my mom, with the way they handled the situation.

I: (pause). Any others feelings that you had at that point?

R: When it was over I was happy it was over and that--I mean, like when I got black and blue, I was probably black and blue about an inch above my elbow and an inch below my elbow. So it was a pretty big black and blue mark that he caused.

I: Yeah.

R: And it was extremely dark, too, so it wasn't just a little black and blue mark, it was huge and dark, so he had done that to me.

I: When did that, did that come right away, that black and blue mark?

R: Yeah, because I didn't have like the platelets in your blood that stop the, um, black and blue marks from forming. My blood was so bad that you can get black and blue very easily, too, so that was also a cause in it, but because, but he played the most factor in it because he kept poking and poking and poking, and I was like, I've had enough already, stop!

I: Right. And that was pretty much the end of that whole situation then.

R: Yeah.

I: All right. . . . Okay, now at this point, we've been talking almost an hour, and we could keep on talking or we could save like the second half of this or the second part of it and I could come back tomorrow night like we talked about, whichever you prefer.

R: I don't care. I'm not doing anything for the rest of the night.
I: Okay. Well, we could start on this part and maybe we'll finish the whole thing, and if we don't, you know if you get tired of it, you know we can break or whatever.

R: Okay.

I: Okay? All right, um, now we're going to go back over these steps again (laugh), but now we're going to get even more specific and we're gonna look at these questions and confusions and feelings and emotions and, um, talk about each of them, kind of one by one. So, just going back to the first step here. This is when you, you know he came in, he said you had to roll over and get this cream on your back. And you had some questions right at that point, and the first question you had, um, is "What is a spinal tap?"

R: Mm hm.

I: Um, so, like what led you to have that question, do you think? Now some of these questions, just answer as best you can, you know, just think about what do you think led you to have that question?

R: Because I'd never had one before, and I didn't know what it was. I'd never heard that term used in my life, and so I was curious at what they were actually going to do. Because in any procedure that they did, I always asked, "What will you be doing?" Because I want to know what they're gonna be doing to me.

I: Right.

R: I mean, I don't want them to do something that I don't know what's going on, so. . .

I: Okay. How did this question relate to your life, do you think? (pause) Some of these, again, it may be repetitive, 'cause you said a little of that, but you can either say it again, or say you already said it, whatever.

R: I think that I was just curious and stuff, about what it was.

I: How did this question you had about what is a spinal tap, how did this connect with your past, you life before this or things that had happened recently.

R: I had never had one, so that's how it did then.

I: Anything else?

R: Not really.

I: How did you see it, how do you see it as relating to your future?

R: Well, now I know what it is, and I'm more informed than most teenage kids on what goes on in hospitals and what like spinal taps are, because I know some people, like when they're pregnant they have them, and so if I ever need one again I'll know what it is and not have to wonder and ask.

I: Okay, anything else?

R: Not really.

I: Um, when you had this question, what is a spinal tap, how important was getting an answer?

R: Extremely important, because I wanted to know what it was and I wanted to know what it was then, but he didn't explain it to me. And that was one thing that made me very upset, that he did not take the time to explain what it was, or even tell me what he was doing it for, what he was putting the cream on for.

I: Um, did you ask the question out loud or to yourself?

R: Out loud. To him, directly (laugh).

I: Okay.

R: And to my mom, but I didn't know if she would know.

I: And, you said you didn't get an answer at that point.

R: No.

I: Okay. Um, since you didn't get an answer, what do you think blocked you from getting the answer, I mean, what prevented you from getting an answer?

R: The fact that he was late for rounds!

I: He just didn't answer you.

R: Yup. Because he needed to go.

I: Um, if you could have waved a magic wand at this point, how would you have been helped. What would have, you know, what kind of answer might you have gotten that would have helped?

R: Just an answer, period, would have helped, or at least to tell me what he was doing it for would have helped, so I wasn't wondering, okay, you just put cream on my back; why?!

I: Anything else that would have helped at that point?

R: No.

I: All right, another question you had at that point was, um, if, you wondered, if he was late for rounds, why didn't he come earlier? Um, you know, you felt it wasn't your fault--

R: Yeah.

I: So, you know, if he was so late, why hadn't he come earlier? So, when you had that question, again, what led you to have it?

R: Just the fact that I was curious of why he waited, why he waited so long to come see me if he was, he knew he had to be at rounds. And the logical thing would have--to do would have been come see me and then go to rounds, not come see me while you should be at rounds, so, just the logic. . .

I: Okay. How did this question relate to your life?

R: Not really, at all (laugh).

I: Okay. Nothing in your past, before that, or relating to your future?

R: No.

I: Okay. Um, how important was getting an answer to this question?

R: Not really; I just wanted to, I just thought it to myself, "Why are you so stupid?" (laugh) That's basically my thoughts when I think of him.

I: So you didn't ask that question out loud?

R: No, I thought that. I think I probably said it to my mom after he had left, but I never said it directly to him.

I: Okay. And did you get any answer to it, even though you didn't ask it?

R: Just the fact that he's stupid! (laugh). That was my answer.

I: Okay. Was it hard to get that answer? (laugh).

R: No! That came to me right away!

I: Okay, and you felt like that answered your question completely, or partially?

R: Partially, because I probably wanted to know why he was, waited so long to come see me; if something, what held him up in seeing me.

I: So it was a partial answer.

R: Yeah.

I: Um, did getting that answer help you, or did it hurt or hinder you in any way?

R: Probably did nothing to me; it just . . . (pause; laugh).

I: Okay. Um, what leads you to say that, that it didn't help or hinder you in any way?

R: Because it's not really an important question. It was just a little thought that I had while he was in the room.

I: Okay. All right, now, at the next point here, this was when your mom talked to the nurse, and the nurse said she'd do the spinal tap, and, um, I don't think you really said you had any questions at this point.

R: No.

I: You just don't recall any questions at that point?

R: No.

I: Okay. So then when the nurse did the spinal tap, you had a few questions at that point. You wondered, first of all, why, you wondered when are they gonna put the needle in, or when are they putting the needle in?

R: Yeah.

I: Okay, so for that particular question, what led you to have that question?

R: Because I wanted to know what they were doing. Because whenever they, I always ask questions whenever they do anything, like, "Why?" Because I want to know what is happening.

I: Okay. And how does that relate to your life, having that question, at that point, how do you think that related to your life?

R: Probably it comforted me in knowing what was happening and stuff.

I: Okay. And how about connecting with your past, your life before that or things that had happened recently?

R: (laugh) It probably has no relationship to anything that ever happened.

I: All right. And how about, how did that question relate to your future?

R: It probably really didn't, because you never have to use that question in your future, so. . . (pause)

I: Okay.

R: I don't know. I just kept, now matter how many spinal taps I ever had that was always the first question I would ask is when is the needle in? Because I would ask the nurse, I'm like, "Can you please tell me when it's in?" Because you really can't feel it. I mean, you feel a sharp, you feel pressure, but you don't, you can't tell if the needle is in or not.

I: Okay. How important was it to you to get an answer to that question at that time?

R: Extremely important, because I wanted to know what they were doing.

I: And you asked that question out loud, you said.

R: Yeah, to the nurse.

I: Did you get answer?

R: Yeah.

I: She told you when it was in?

R: Yeah.

I: Was it hard to get that answer from the nurse?

R: No. They say a lot of kids will want to know--or not want to know, depending on the kid's personality. But most of the older kids want to know, because they know what, they have a sense of what's happening; little kids really don't have any clue on what's going on.

I: You were how old at this time?

R: I was 14.

I: Um, so, did you feel that the answer that you got was complete or partial?

R: Complete.

I: And, um, how did that answer help or hurt or hinder you?

R: It just comforted me, knowing the fact that, okay, it's almost over.

I: Okay. And how did that help?

R: It just let me, it helped me realize that it's not that bad. I mean, it just sounds worse than it really is.

I: Anything else? How did that help, knowing that?

R: It probably helped me in my next spinal tap, so that I knew that next time I had one it wouldn't hurt as much as I thought.

I: Anything else?

R: No.

I: Did it hurt you in any way, knowing, getting the answer to the question?

R: No.

I: Um, all right. Also, at that point, another question that you had, you wondered, "Is it over yet?" That was another question you had.

R: Mm hm.

I: So, thinking about that question--while you were having the spinal tap, you wanted to know when it was going to be over; is it over yet; um what led you to have that question?

R: Just so I would know, like, if I could move, because I hated--I would not move. Because I pictured a metal needle in my spine, and I could just picture that if I sat up with the needle, that it would just hurt, so I would always just stay still.

(TAPE 2, SIDE A)

I: All right, now where were we? Um, we were in the middle of when you had the question of--

R: "Are we done yet?"

I: Yeah. "Is it over yet?" Okay. And I had just asked you what led you to have that question.

R: Yeah.

I: Okay, and then did we talk about how that question relates to your past life?

R: No.

I: Okay. So how do you see that one connecting to your life; in any way?

R: Has no (laugh) . . .

I: Okay. Not your past or your future?

R: No.

I: All right. And how important was it to you to get an answer to that question?

R: Important; that way I knew it was over. And it didn't take that long; that was one thing that I was happy about. And they told me, so.

I: So you'd know it was over then.

R: Yeah.

I: Okay. And, you asked that question out loud?

R: Yeah.

I: Okay. And, did you get an answer at that point?

R: Yeah.

I: Was it hard to get the answer?

R: No, they were very nice about answering the questions and stuff because they knew it was my first one, and they knew that I didn't know what was really going on and so they were very nice about everything.

I: Okay. All right, so the answer, would you say that they answer helped you?

R: Yeah, because it like made me realize that it doesn't take that long. I mean, it's probably approximately 5 to 10 minutes. That's about it, if that. It takes more time setting up than the actual spinal tap.

I: Yeah. Okay, and how did that help you, knowing that?

R: Just the next times I would have one I knew it wouldn't, it's not as bad as I thought it would be.

I: And how about that, how did that help you? (pause) You can just say, when you're done, "That's all."

R: Yeah, that's about it.

I: Okay. Now, at that point, another question you had was. . . maybe that was all at that point. Oh, no, you had another one. You wanted to know, um, is the fluid, you asked, "Is the fluid dripping out?"

R: Yeah.

I: So what led you to have that question?

R: Just curious. Curiosity (laugh).

I: Okay. Anything else?

R: No.

I: All right. And how did that question relate to your life? In any way?

R: (laugh) None whatsoever!

I: Okay.

R: Half the questions I ask have nothing to do with my life; just curiosity.

I: Okay. How important was it to you to get an answer to this question?

R: Important, because I wanted to know what they were doing and stuff.

I: Okay. And you asked the question out loud?

R: Yeah.

I: Did you get an answer?

R: Yeah.

I: Was it partial or complete?

R: It was a completed answer.

I: Was it hard to get the answer?

R: No. It took awhile, I think, at the beginning because the leukemia, like (pause) . . . like, I don't know, I mean I think it was, wasn't just, it should have flowed faster, but because of the leukemia cells in my blood and everything, it didn't. So it took awhile before they answered, but they did answer as soon as it started.

I: Okay. Did getting the answer help or hurt or hinder you in any way?

R: It helped, because I knew it was almost over.

I: All right. And how did that help you, knowing that?

R: Just knowing that it doesn't take as long as it usually does.

I: Okay. Now, at this next point, let's see, at the point when the intern came back and he was angry, you really didn't have any questions, you had some reactions--

R: Yeah.

I: But then after that, um, later in the day, he came back to take blood, and that was when your bed was against the wall and all that.

R: Mm hm.

I: And you had a few questions there. First of all, you just wondered, "Why is he back?" And you wondered, "Why is he doing this?" So just thinking about the question, "Why is he back?" can you think of, you know, what led you to have that question?

R: Just the fact that, the way he acted that morning. And I didn't really want him back; I wanted him gone (laugh).

I: Okay. And, um, how did that relate to your life?

R: None whatsoever (laugh).

I: Okay, and how important was it to you to get an answer to that question?

R: Not really important. I just asked it to myself, just thinking about him and stuff.

I: Okay, so you asked it only to yourself, not out loud.

R: Yeah. I probably asked it to my mom, just like whispered it, like "Why is he back?" But she wouldn't have, we both wouldn't have known.

I: Right. Did you get any kind of answer to the question?

R: Just that he was going to take my blood, but that was it.

I: Okay. Was it hard to get that answer?

R: No.

I: Okay. And did you feel that that was a partial or complete answer to your question?

R: Probably a complete answer.

I: And did getting that answer help, or did it hurt or hinder you in any way?

R: It hurt me, because I knew that he was rude and stupid and (laugh) I didn't like him!

I: Okay. And then, um, then you wondered, "Why is he doing this?" at that point, when he--he was back and he was going to take your blood; this was before, I think, he even asked you to turn yourself around, but he was there and so you were wondering, "Why is he doing this?" kind of related to that.

R: That was basically just the whole curiosity factor.

I: Okay.

R: I mean, I probably asked it, it was just a thought question, that I was curious about.

I: Okay. So you didn't ask that out loud.

R: No. Probably not. I don't know, it was awhile ago (laugh).

I: Did you feel that you got an answer, to why he was doing this?

R: No, not really, because I didn't know why he was doing it and not like a nurse or something.

I: Okay. How important was it to you to get an answer to that question?

R: Probably not as important as the others, but important, because of him, of all people, doing it, not anybody else.

I: All right. And what do you think blocked you in getting an answer to your question there?

R: I probably just didn't think about it again, just forgot probably about it.

I: Okay. And in an ideal world, how would you have been helped by getting an answer to that question, had you gotten one?

R: I have no idea.

I: Okay. All right, um, and then the intern, [xxxx], said that you had to turn around in your bed so that he could take the blood from your right arm. And you had a couple of questions. One was, you wondered, you asked or wondered why he had asked you to turn upside down instead of just pulling the bed out. Okay? So, what led you to have that question?

R: The fact that it was the most illogical thing I'd ever--it was just a stupid thing to do, instead of pulling the bed out, it was so illogical it wasn't even funny! (laugh)

I: Okay. And how did that question or having that question relate to your life?

R: Probably it was the fact that it just enhanced his stupidness! (laugh)

I: Okay. All right, and how about connecting with your past, your life before that or things that had happened recently?

R: Nothing really.

I: Okay. And do you see that question as relating to your future in any way?

R: Probably not, because most people in my future (laugh) will pull the bed out from the wall if I ever have to get blood taken again; they won't have me turn upside down.

I: Okay. How about at the time, when you asked the question, do you think that it related to your future from that point?

R: Probably not.

I: Okay. And how important was it to you to get an answer to that question?

R: I wanted to know, because, why would he have me turn upside down when he could have pulled the bed out from the wall? I mean. . .

I: Okay. Did you ask it out loud or to yourself?

R: I think I asked it to him, and he just, I don't remember what he said, but I don't think he answered the question. I think he just said, "Turn upside down."

I: So you didn't get any answer to your question?

R: I don't think so.

I: Okay. What do you think blocked you in getting an answer?

R: Him. Because he wanted to get the blood taken--he didn't--he has basically no patience, he had no patience whatsoever for anybody, so I think he was very, he wanted to do it and get it over with and so he didn't answer me.

I: Okay. Um, ideally, if you had been able to get an answer, how would that have helped you?

R: It would have at least given me a reason why I had to turn upside down and not pull the bed from the wall.

I: All right. Anything else?

R: Nope.

I: Okay. And then, you also wondered, let's see here, "Why was he so stupid?" (both laugh). That was another burning question you had, right?!

R: Yup.

I: What led you to have that question?

R: Just the way he acted, the way he looked. I mean, if you'd look at him, he looks like he has no idea what he's doing. And just how he was acting and everything.

I: And how did having that question relate to your life?

R: (laugh) None whatsoever! It was just a little thought question of mine that I said to myself (laugh).

I: Okay, all right. How important was it to you to get an answer to that question?

R: Not really important. I just wanted, I just was thinking to myself about it.

I: All right. So you didn't ask it out loud at that time.

R: No.

I: Did you ever get any kind of answer?

R: No, because he didn't explain anything whatsoever. You really should do that in a hospital situation, explain, but he didn't, really.

I: Okay, and so when you had this question in your mind--why is he so stupid?--was there something in particular, I mean, was there anything that blocked you from getting an answer to that question, prevented you from understanding that?

R: I understood why he was stupid just because (laugh), I probably made up my own reasons why he was acting and being so stupid, but . . .

I: Okay. And how did that help you, having those reasons in your mind?

R: Probably none (laugh). Didn't help me.

I: All right. Um, now at the next point here, you said that he was trying then to take your blood. He was poking and prodding--

R: Mm hm.

I: And you had rolling veins and so he couldn't find the vein, but he kept poking and prodding. So at that point, you wondered--hm, I'm trying to think of the order you asked these--"Can he actually do it? Could he do it?"

R: Yes.

I: You had that question. So, you know, when you had that question, what do you think led you to have that question?

R: Just the fact that it took him so long, and most people would be able to, if you were good at doing something, you probably can get it like your first or second try. You don't have to take 10, 20 minutes to try to do one simple thing. (laugh)

I: Okay. Um, and so then when you were asking this, could he actually do it, do you think that that question related in some way to your life? How did that relate to your life, that question?

R: It didn't, it--it discouraged my trust with people taking my blood, because I wanted them to get it and then get it over with, but he just kept prolonging the agony and everything.

I: Anything else?

R: Nope.

I: Okay. And thinking about how it might have related with your, connected in any way to your past, with things before that or things that had happened recently. . . ?

R: No. Not really. Well. . . , no, never mind.

I: Are you sure?

R: Yeah.

I: And what about your future, things after that.

R: No, it just makes me more cautious about interns and everybody.

I: Okay. How important was it to you to get an answer to that question, could he actually do it?

R: Important, but not very important, because I just didn't have any understanding of what was taking him so long and everything.

I: Okay. Did you ask it out loud or to yourself?

R: Probably just to myself.

I: Okay. Did you ever get an answer to this question?

R: (laugh) Just the fact that he's incompetent and can't do anything!

I: So, how hard was it to get that answer?

R: Extremely easy!

I: All right. And was it a complete answer or a partial answer?

R: There probably could have been more reasons why he was taking so long.

I: Did getting that answer in your mind help you or hurt you or hinder you in any way?

R: Not really.

I: Okay. If it could have been helpful, I mean if having that answer might have helped you, how do you think it might have helped you? Can you think of any way that you could have had a helpful answer?

R: It would have just let me know why it was taking so long.

I: All right, then you also wondered, "Would it always hurt this much?"

R: Yeah.

I: What led you to have that question?

R: The fact that I'd never really had my blood taken before, and I was wondering--curiosity (laugh).

I: Yeah. Okay, anything else?

R: No.

I: And how did that relate to your life?

R: It helped me know that it only hurts so much when they don't know how to do it (laugh). Normal people who know how to do it, it doesn't hurt that much.

I: Okay. And how did that question connect with your past, your life before that or things that had happened recently?

R: Not really at all, not in my past. In the future, now I get my blood taken somewhere else and I don't like them doing it, 'cause it's like a new person every month, and I don't like new people. I like the routine, same person doing it, and so I get anxious because I don't know if they're gonna hurt. I mean, they only do a finger prick, but still that can hurt. Only for a split second, but, everybody has their own unique way, and so. . .

I: Right. Okay. And then when you had that question, you know, would it always hurt this much, how important was it to you to have an answer to that question?

R: Important, because I knew I'd be having my blood taken (laugh) a lot more times, so I wanted to know.

I: Okay. Did you ask it out loud or to yourself?

R: Probably out loud, because I, whenever anything was getting done, I would always ask, does it hurt, does it do any, any like side effects or anything. But, mostly if I was having something poked at me I would ask if it would hurt (laugh).

I: Yeah. Okay. Did you get an answer to that question?

R: Oh, just when I finally got somebody who knew how to take it I got an answer that it, no, it doesn't always hurt that much.

I: Okay. And how hard was it to get that answer?

R: Not very hard, because the majority of people who take blood know what they're doing, so. . .(laugh)

I: Okay. So did you find that answer to be partial or complete?

R: Partial, because sometimes it still does hurt even though people know what they're doing.

I: Okay. And did getting that answer help you?

R: Yeah, because it comforted me the next time I got my blood taken; I knew it wouldn't hurt.

I: Did it hurt you in any way? Or hinder you?

R: No.

I: Did it help you in any other way?

R: Nope.

I: Okay. And then you also wondered, at that point, you asked him, "Can you get a nurse?"

R: Yeah.

I: Um, what led you to have that question?

R: Because it was taking him so long, and he was hurting me, and I knew nurses would probably be able to do it.

I: Okay. Um, did that question relate to your life in some way?

R: It helped me realize that if anybody does anything to me that I don't like, always ask for a nurse, because nurses always know how to do it.

I: Okay. So, um, that's kind of relating to your future, after that.

R: Yeah.

I: How about your past, did that question connect to your past?

R: Nothing really connects with my past, because nothing like this had ever happened to me before. I had never really ever been in a hospital in any situation except for little physicals when I was little. So nothing really basically goes to my past.

I: Okay. I'll probably keep asking it--

R: Yeah.

I: So keep thinking about it, you know, and if anything does come to your mind--but if it doesn't, just say no.

R: Nothing really.

I: Okay. Um, how important was it to get an answer to this question?

R: Important, because (laugh) I didn't want him to do anything to me again, so. . . I wanted a nurse who could do it.

I: Did you ask it out loud or to yourself?

R: Definitely out loud, and (laugh) probably more than once! (laugh)

I: All right. And then did you get an answer to that question?

R: I think he said, like, "The nurses are busy," or "I want to do it," or something like that.

I: Did, was it hard to get the answer?

R: Yeah, because he's an idiot and doesn't know why he does things and why he can't do something and stuff, so. . . And he never wanted to answer me, as I recall.

I: Hm. Okay, so was the answer you did get at that time partial or complete?

R: Partial, because I knew that he could get a nurse if he wanted to. Or a nurse could come. I don't know why my mom never went out and got one. . . I don't know.

I: Did the partial answer that you did get, did it help or did it hurt or hinder you in any way?

R: It hurt, because I knew that he wasn't going to get one and that he'd keep doing it, so I was upset that he wouldn't do it--because I know now that you have rights as a patient, and one of your rights is to, if you don't like something being done, to say something, and it should be changed, and he didn't do that.

I: And how did that hurt you, then?

R: Just knowing that he wasn't going to comply with what I asked, because most people, if you ask for a nurse, or somebody, will do it, will get a nurse for you.

I: Um, okay, anything else with that?

R: Nope.

I: Okay, if you had been able to get a complete answer at that point, how would that have helped?

R: He wouldn't have poked so much, and it would have comforted me having a nurse there.

I: Okay. And what blocked you from getting a complete answer?

R: Him, and his stupidity and incompetence.

I: Okay. Then, after that, you said that the procedure was interrupted because they came and said you had to go for an EKG and that [xxxx] would have to wait to take the blood. So the question you had at that point was, would he try again when you got back, you wondered.

R: Mm hm.

I: What led you to have that question?

R: Curiosity. Would he do it or would he get a nurse like I asked.

I: And how did that relate to your life, having that question, or how did that question relate to your life?

R: Just the fact that it would have comforted me, knowing that he wasn't going to be doing it again.

I: Okay. And how did that connect with your past, your life before that or things that had happened recently?

R: Nothing.

I: Or your future?

R: Nope.

I: Okay. And how important was it for you to have an answer to that question?

R: Important, because I wanted to know who'd be doing it.

I: Mm hm. Okay, and did you ask it out loud or to yourself?

R: Probably to my mom.

I: And did you get an answer?

R: No, because they didn't know.

I: Okay. So the thing that blocked you from getting an answer was that nobody knew the answer to the question.

R: Yeah.

I: If you had been able to get an answer, how would that have helped?

R: It would have either comforted me or made me mad (laugh) if he was gonna stay.

I: Okay. And then you said that after the EKG, he came back to take the blood, but the nurse said to go get a different vial. All right? So then, you wondered, would the nurse be able to get it? Would the nurse be able to take the blood? Right?

R: Yeah.

I: Am I saying that right? Is that an accurate description here?

R: Yeah.

I: Okay, so what led you to have that question, would the nurse be able to get it?

R: Because I, because since [xxxx] took so long, I didn't know if, if she would--I didn't think she would take as long, but I wondered.

I: Mm hm. Okay, and how did that relate to your life in any way?

R: Mm, probably gave me the confidence in nurses, that they can do it and not poke and prod and everything.

I: Okay, um, how did that question connect with your life before that or things that had happened recently?

R: Mm, no connection.

I: And does that relate to your future, then, as well?

R: Yeah, because I know nurses can do it better than even doctors; doctors can't take blood very well, because they don't do it that often. Nurses can.

I: And how important was it to you to get an answer to that question?

R: Important, because I wanted (laugh) I wanted to get it over with, because it took so long
the first time when [xxxx] tried.

I: Right. Did you ask the question out loud or to yourself?

R: Probably just to myself.

I: Did you get an answer to the question?

R: Yeah, because she could do it.

I: Okay. So you saw that she was able to do it.

R: Yeah.

I: And how hard was it to get that answer?

R: Not very hard, because she got it really fast.

I: Okay. Was that answer partial or complete?

R: Complete.

I: And how did that answer help or hurt you in anyway?

R: It helped me with the confidence I have now in nurses and stuff.

I: And how did that help you?

R: Just. . . having confidence in somebody.

I: All right. Okay. And then the last thing that you said happened is that [xxxx] came back and tried again.

R: He didn't try again. He just, he wanted to try again. They had it the first time; he wanted to try though, but we wouldn't let him because they had gotten the needle in, and since it was so hard to get the needle in in the first place, they didn't want to . . .

I: Okay. So, he came back, though, with a different vial, but he had brought the wrong size.

R: Yeah.

I: And the nurse yelled at him to get the right size.

R: Yeah.

I: So at that point you just kept wondering what an idiot he is, and why is he such an idiot, right?

R: Yeah.

I: And what led you to have that question?

R: Just the fact of the way he was acting, like I said earlier when I asked that question at the beginning.

I: Did that relate to your life in any way, having that question?

R: No.

I: And how important was it, at that point, for you to get an answer to that question?

R: Not important whatsoever; I just was thinking it to myself.

I: Okay. Um, so you didn't ask it out loud?

R: No.

I: And did you ever get any kind of answer to that?

R: No.

I: Would it have helped you?

R: Not really, because you really can't get an answer to a question like that, so. . .

I: Okay. All right. Well, that kind of covers the questions. Now, if we continue on, and you can decide whether you want to go on at this point or not, we would go back over again to the timeline steps here, and we would look at the emotions and feelings and physical reactions and conclusions and ideas and all that, all together, we would finish the rest of the things. Like, in other words, we wouldn't do each of those separate and go back again, we would talk about, all together, the things that were emotions, feelings, physical reactions, ideas, conclusions, understandings, those kinds of things. So we would go back and talk about each of those, one by one.

R: I think we just should stop for tonight, 'cause it's late.

I: Okay.

(TAPE 2, SIDE B--3/6/97)

I: Just to kind of, um, you know, get us both back on track, we're thinking in terms of this model [showing Sense-Making Triangle] I showed you and the idea of when people go through situations, they typically have questions and confusions and all that, and things that hurt them, and things that help them, and ways of coming up with ideas and understandings and conclusions and stuff that help them get from one side to the other when they have these questions and stuff. So, we're focusing on those kinds of things in this situation that you were in, that you described all these steps to me. So we kind of talked about your, we went over looking at the questions you had, and we talked about a lot of things about how you felt about those questions when you had them and that kind of thing. So now we're going to go back to each of the steps that you talked about. And if there's anything about these steps that, you know, when I describe them, if I don't describe them right like you remember them or you told me, because I was scribbling, so just correct me if I say them and I'm not right about them or I leave something out or something--because you can add things on or whatever. Um, so you talked about, in addition to your questions, emotions and feelings and physical reactions that you had, um, and conclusions and ideas and understandings and that kind of thing. So we're going to go back and talk about those, one by one, at the different steps, okay? All right, so at the first part, the first thing you said happened was that [xxxx] came and said you had to--he didn't say you had to have a spinal tap; you found out afterwards, but he came and said you had to roll over and get cream on your back, and that he was late for rounds, and that's all he said. And, so at that point, you had said that, besides the questions you had, you said that you were terrified, first of all, and that you were--well, let's just talk about that one. You had said that you were terrified, and so, when you had that feeling, what kind of, what led you to have that feeling, do you think? I mean, what was going on in your mind?

R: Just the fact that it was a completely new experience for me that I've never had before and I didn't know what to expect with anything.

I: Okay. Anything else?

R: Probably not.

I: Okay; and that connecting to your life thing.

R: (laugh)

I: You know, just keep thinking about it, because a lot of times people, you know, especially when they think about things later or think about them more, sometimes peoples' feelings or conclusions or questions, they realize or think about ways that they connect to their life. But just on this feeling of being terrified; did you feel like it connected to your life in some way?

R: Not in the past, but in the future, because all the new things I've experienced, every single new thing that they did to me, I was always terrified at first because I didn't know what to expect. So like everything, anything that happened to me that was a new experience that I'd never done before, it was always, I just had that same feeling no matter what.

I: Okay. All right. So it didn't relate to your past, but it related to your future after that.

R: Yeah.

I: Okay, um, did this emotion of being terrified, did it have consequences or impacts?

R: Probably, because I've always been terrified of new things and so I mean, that just, when he didn't even explain it, he just like made it stronger, the being terrified, so. . .

I: Yeah. Okay. Um, did having this emotion hurt you?

R: Probably not; it just made me like nervous and stuff, which (laugh) always happens, so there's no way to get around it.

I: Did that emotion help you in any way?

R: No, probably--it probably made me too nervous, actually. No, it probably made me so paranoid about what was happening that it took me awhile to get what was happening.

I: Okay. And did that, you know, the fact that it made you more terrified and all that, did that hurt you in any further way?

R: I don't think it hurt me any further, it just . . . (pause)

I: If things were perfect in a perfect world, how might it have helped, could you have been helped by that?

R: I mean, some fear is good, because you don't know . . . but I don't think that, I shouldn't have been terrified of it, I mean, if he would have explained it to me, I don't think I would have been as scared. But since he didn't even tell me, I'm like. . . if someone just tells you to roll over, I mean, what do you, you have no idea what you even expect.

I: But if he would have explained it to you, you might have still been afraid but it would have helped you--

R: Yeah.

I: --be less afraid?

R: Mm hm.

I: Okay. All right, and then you also said that you were angry and upset, you and your mom both.

R: Mm hm.

I: Um, so what led you to that feeling of being angry and upset?

R: Just the fact the way he treated me. I mean, he did not treat me with respect, he did not treat me as a patient. He just treated me like. . . an object! I mean, you, that's like what you tell your dog, you tell your dog to roll over; you don't tell a person! So, I mean, he just didn't treat me the way you should be treated.

I: Okay.

R: Especially in a situation like that.

I: Right. Okay. And, um, so how did that, you know that feeling of being angry and upset connect with your life, your past or your future or the present?

R: Probably nothing. Being upset at him really has no . . . .

I: Okay. Um, did having that emotion of being angry and upset have consequences or impacts.

R: It probably made me more upset, and just like, because when I get upset I really get upset, and that just makes me like more nervous or more--whatever I'm feeling, and so that probably just made the fact that I was scared worse, because I was upset at the same time and when I'm upset and something else, that's not a good combination (laugh).

I: Okay.

R: So, it probably just made me get so upset that I . . . I don't know . . . I don't know how to explain it, in words.

I: You're explaining it well! (joint laughter). Anything else?

R: No.

I: Um, did being angry and upset--well, you said it kind of hurt you, um, or made things worse, it made you more scared, and that made you more upset--

R: Yeah.

I: --And things like that. Um, did it hurt you in any other way?

R: (pause) Probably not. Not when I first met him. Later on it probably did, but not at first.

I: Okay. And did it help in any way?

R: No, it just made everything worse because it just kept, like, making my whole cycle of emotions go, like, deeper and deeper, so. . .

I: Yeah. Okay, um, and is there any way, if things were perfect, in an ideal world, that you might have been helped at that time?

R: (pause) No, because there was really nothing he could have done except explain it, but I don't think he was gonna take the time to do that, so . . .

I: Okay. Um, all right, and then the other thing you said at that point was that you felt confused, in addition to being terrified and angry and upset, you were confused. What led you to feel that way?

R: Probably because I didn't know what was going on and I like to know what is going on all around me no matter where I am. So, not knowing just made me confused at where it was going.

I: Right. Um, how did that connect to your life? . . . You kind of said that you like to be--

R: Yeah. No matter where I am, I have to know what's going on around me, or I just, I hate it, I hate--I cannot sit anywhere without, like, listening to other people talking, even if I'm in like a public place. I have to know what the people around me are saying, even if I don't even know them (laugh).

I: Yeah.

R: 'Cause I'm a nosy person, and I need to know (laugh).

I: (joint laughter) Okay. All right, um, did you see it as connecting to your future life in any way, being confused?

R: No.

I: Um, did feeling confused have consequences or impacts for you?

R: Probably not. I think the being upset was, like, greater than being confused. Being confused was probably like the least of my emotions at that time, so. . . .

I: Okay. Did being confused help you in any way?

R: No. It just made everything worse, because I needed to know what was happening and I didn't know.

I: And so, would you say it hurt you?

R: Yeah.

I: And what leads you to say that?

R: Just because it--I need to know what's going on and when I don't I get mad, because (laugh) I don't know what's happening.

I: Okay. So being confused made you mad, too.

R: Yeah.

I: Okay. Um, and again, there, when you were feeling confused, if you could have waved a magic wand, how would you have been helped?

R: Somebody explain to me what was happening to me.

I: All right. And then you also talked about, well, let's see, at that point you said you didn't have any conclusions or ideas or understandings.

R: No.

I: You can't think of any others right now, either?

R: Nope.

I: Okay.

R: It was too early on in the thing, I mean, I didn't, it was all, it was happening all at once, and I was trying to like take it in, so I didn't really know what to do.

I: One thing I wanted to mention to you--this is just an aside--but, I was thinking about it afterwards, and, you know, I've explained that this interview is a, you know, it's a very particular, different kind of way of interviewing, and it's very different than regular conversation. So, you know, my normal style when I'm just conversing with somebody is, you know, I would talk to you about things--

R: Mm hm--

I: --that I've experienced and I would react more to you, and I would, you know, ask you maybe different kinds of questions and stuff, but, um, so I just wanted, I hoped that you're not put off or that you think--

R: Oh, no! 'Cause I realize this is an interview, like, this type of interview.

I: Right. And what I really am trying to do is just give you the freedom, I mean, I don't want to put words in your mouth--

R: Yeah--

I: And I just want to know how you are feeling and I, you know, I don't want to let my reactions change that or color it.

R: Oh, I understand; that's fine. Whenever I talk, nobody ever answers me, (laugh) or responds, so it's nothing new! (joint laughter).

I: Well, I hope you don't feel I'm not responding! You know, I'm just trying to listen as well I can, and to let you really tell just how you were feeling.

R: Yeah, I understand. No problem.

I: Okay. So then the next thing you said happened, you said that your mom talked to the nurse practitioner and that she said that you had to have a spinal tap.

R: Mm hm.

I: And, um, she said that she'd do the spinal tap.

R: Yeah.

I: And she said you don't have to worry; I'll take care of him.

R: Mm hm.

I: So then, at that point, um, let's see, you said that, first of all you said that you were relieved that the nurse practitioner was going to do it.

R: Mm hm.

I: So you felt relieved when she said that. So, um, that emotion, how did that, what do you think led you to have that emotion?

R: Probably because, like, when I was first diagnosed, she was like, extremely nice; she explained everything, what leukemia was, what everything was. And knowing, like, basically she was the closest person I knew there, because you have different nurses every day, so I mean, you don't bond with the nurse, and the doctors really don't see you, so basically she was the only one that I could, like, I knew.

I: You said she was in charge of you.

R: Yeah, she was my like case manager. And, um, so I trusted her; and like when I trust people, I'm glad that they do stuff, so that's why I was relieved, because I knew she was doing it.

I: All right. And how did that connect to your life, feeling relieved that she was going to do it?

R: 'Cause that's how I am. I have to, if I do not trust the people that are doing procedures on me, I get so anxious. I mean, my stomach hurts--I mean, even, like a couple of days ago, yesterday, I had to get my blood taken, and every day it's a new person at this new place. And I could, I was sitting waiting, and I could tell that I didn't like getting my blood taken there, because of the way my stomach felt inside. 'Cause it was the same feeling that I had at the very beginning, when I'd first gotten my blood taken. Because at Children's, you get the, the same person takes your blood every month. So I trusted her because she had done it and she had done it good! But, I mean, so I have to, if I don't trust the people then I just get upset, and so when I do trust them I feel so much better because I know they can do the job and I know they can do it right.

I: Okay. Um, did you see that feeling relating to your life before that point?

R: Yeah, because I always just felt relief if I trust somebody. I mean, that's basically the only time that I have to be with somebody I know and I trust, so. . . .

I: Okay. And, um, how did you see that as relating, or how do you now see it as relating to your future life?

R: Basically the same thing; I know that I have to know them if they're gonna do something. That's why I hate when my schedule gets changed, because, if we were going to have to move I would, I hated it; I was so upset because I knew I'd have to switch hospitals. And I knew that I'd have to get used a whole new hospital staff, and I can't, I can't handle that. I have to have (laugh) the same people, or people that have looked at me a number of times do it.

I: All right. Did this feeling of relief have consequences or impacts at that time?

R: Yeah, it probably made me so, it just made me feel so much better, knowing she was gonna do it.

I: Uh huh. Um, so, did it help you then, having that feeling?

R: Yeah.

I: Did it hurt you in any way?

R: No, it just helped me feel better. And calm down after my little, probably temper tantrum (laugh), at the beginning.

I: And how did that help you then, calming down that way?

R: Just that I could relax and not have to worry about what was gonna happen.

I: Okay. Anything else?

R: No.

I: Okay. Um, and then you said that, um, in addition to being relieved--you were mostly relieved--and you were happy to know that she was the one who was doing it and that she was experienced. Do you see that as being a different kind of reaction to being relieved, or was that kind of all the same thing, the relief and the happiness?

R: Yeah, it was basically all mixed in together; one caused the other.

I: Okay. And then you also said next that after you were relieved, you were scared.

R: Mm hm.

I: I guess scared that, what was gonna happen next--

R: Yeah, because the cream has to be on for an hour to get it, to have it work. And so, I mean, during that hour, I'm always fine, but when that hour is coming to an end, I always would get scared at--okay, are they gonna be able to get it on the first try? Are they gonna do all this stuff, and how will it be?

I: Now, at this point, though, this was your first spinal tap, right?

R: Yeah, first spinal tap. So I really had no idea anyways, what it would be like.

I: So you were scared--

R: Yeah of that--

I: Of what you didn't know--

R: Yeah. The unknown, basically.

I: Yeah. Okay, and how did that connect to your life?

R: 'Cause I'm always scared--if I don't know about something, I don't like it (laugh), 'cause I'm scared of it.

I: Okay. Um, how did, did you see that as relating to your future life in some way?

R: Yeah, because I like to learn about things before they actually--I like to know about them before, at least with a longer advance notice before I'm going to be doing something, and so. . . .

I: Okay. Um, did having this feeling of being scared hurt you in any way?

R: Probably, because I probably got anxious and then, in a big, like, just a big emotional cycle. And when you're upset, it's really hard to get the--when you're upset, I guess you're like, since you tense up so much, it's harder to get like the fluid flowing, so they want you to relax, and that's hard when you're scared and you're nervous and everything, so, I mean, they really needed me to calm down, but I just couldn't. So I think, I think the first one they gave me medicine to put me out. I don't remember though; I mean that may have been my bone marrow, but I don't remember. I think they just might have given me numbing cream.

I: Okay. So, along with being scared, everything was tense, your body was tense.

R: Yeah.

I: Um, do you think it could have helped you in any way?

R: No.

I: What leads you to say that?

R: Because being tense just makes like everything like worse. I mean, it's harder to get, they, you gotta, you need to relax when they do things, which I finally learned and I finally was able to do, because the same person always did my spinal taps. So, I mean, I always knew that somebody I trusted was always gonna do it, and I knew they could do it.

I: Yeah. Okay. (pause) And then, um, you said that at that point the nurse practitioner explained everything, um, so that was an understanding you had; you know, we asked, like, what conclusions or understandings or ideas you had, and you said that the nurse practitioner explained everything. So, um, that was an understanding, you now understood what was gonna happen at that point?

R: Yeah. Well not completely, but enough to make me not as scared. Because, I mean, I still didn't know if it would hurt; she couldn't give me the details on, like, how it was--

I: Okay.

R: --because, I mean, it's always different for people. I mean, some people get side effects from it. Some people get like spinal headaches. So you don't really know what to expect, but you have a basis of what to go on.

I: Okay. Yeah, you said that after she explained everything, you just had a feeling of knowing what was going on generally.

R: Yeah.

I: So even though you didn't know completely--

R: Yeah, I knew enough to, that I, I knew enough for me.

I: Mm hm.

R: I mean, other people may have wanted more information, but I had enough, I was satisfied with what she said (laugh).

I: And how did having that understanding, or that, you know, feeling of coming to a conclusion or an understanding of things help you?

R: Probably calmed me down. Because I mean, I just, I need to know. And if I don't know then (pause) I just get so nervous, so everything.

I: Okay. All right, how did that, how did this understanding, you know of knowing what was going on, connect to your life?

R: Just the fact that I need to know what's going on, and like people explaining things to me.

I: Okay. And, like, at that moment--so it's kind of like, if you think of the past and that moment and the future, did it connect to your life in different ways, um, your past or your present at that point, or your future?

R: Yeah, because I've always wanted to know, no matter where I am, I always like when people explain things to me.

I: Okay. Is there any way that having this conclusion hurt you?

R: No.

I: Okay. Then at the next point, you said that, um, so then the nurse actually--the nurse practitioner actually did the spinal tap, and that she did it in your room--

R: Yeah.

I: --which you said was nice; you liked that.

R: Yeah.

I: Um, they don't always do that--

R: No, I guess they don't for little kids, because then the, I guess the little kids will associate like their room as a bad place, and they don't want the little kids to think that, so they take them to a different room so they associate the other room as the bad place. So, but they knew I was old enough, and they knew that I could comprehend the fact that, the difference between good and bad places, so--

I: So you were glad they did it in your room.

R: Yeah. Because, I mean, I was in no condition to even move, so--

I: Right.

R: Basically, they just had me roll on my side and they did it.

I: Okay. And you said at that point, as far as reactions, you had one physical and emotional, physical slash emotional reaction; you said you were crying at that point.

R: Yeah.

I: So, what led you to that, do you think?

R: Just the fact that it was happening. I mean, I'll cry when they're setting up, or I'll get like really--that's when I get nervous, but like after they tell me that the needle is in, I calm down immediately. They say that I calm so well, that it just, I am one of their best, I was one of their best patients because I did not move, I did not scream, I would just calm down immediately after they told me that the needle was in. And that's one thing, where I needed to know it was in, because it helped me to calm down.

I: Yeah. So, even this very first time, you were crying before they started?

R: Yeah.

I: Okay. And then, once they started, and you knew the needle was in--

R: Yeah, because it's not that bad, actually; that's what I realized, as soon as they put the needle in, I'm like, "Hmmm! This isn't that bad!"

I: That's what you said, yeah. You said that once they started the spinal tap then you, the conclusion you came to was that it's not as bad as you thought, as it sounds.

R: Yeah.

I: Okay. And, you know, when you were anticipating and you were crying and all of that, um, do you see that, like, connecting to your past or your future life or the present moment in some other way that you haven't talked about?

R: (pause). [softly]: I usually cry when things are about to happen to me, and stuff like that.

I: Did crying, having that feeling, that really sad and upset feeling, did it have consequences or impacts?

R: It let my steam out; I mean, I was able to express myself without anything to hold me back. So I mean, that calmed me down as well, because I knew I could cry and it was okay, so . . . .

I: So, did you feel then that it helped you?

R: Mm hm. Yeah.

I: Did it hurt you in any way?

R: Probably not, because no matter when, I cry. Even if--I mean, half the time, the doctors had to laugh because, like, sometimes they'll do a spinal tap and a bone marrow at the same time. And the one day, I went into it laughing--and crying at the same time, and they had never had anybody do that. They had never had anybody go into there laughing, hysterically. And so, I mean, it helps me to cry and to laugh at the same time, because it just lets me express myself.

I: Mm hm. Lets steam off, that's what you said.

R: Yeah.

I: Um. . . all right. And when you had this, came to this conclusion, that the spinal tap isn't as bad as it sounds, or as bad as you thought it might be, what led you to come to that conclusion?

R: Just the fact that it wasn't. I mean, when you say spinal tap, you think of pain. Something is going into your spine, I mean, that's not a good--when you (laugh) if you just picture that, as a 14-year-old, I mean, you would just--just the pictures that would come to your mind! But, I mean, it's, since the cream, it doesn't hurt. I mean, two years before, if I'd been diagnosed two years before, they wouldn't have had that cream. Because we know people who were, and they didn't get to use it. They just, they had nothing. So, I mean, it helps. So that's what made it not as bad, is the cream.

I: All right. Um, let me see. So did coming to that conclusion, that it's, it wasn't as bad as it sounded, did that have consequences or impacts?

R: Yeah, because the next time I would have had, the next time I would have a spinal tap, I didn't have to, I knew what to expect. And I didn't have to be as scared; I was still scared to some extent, but I really didn't have a need to be as scared as I was because I had already experienced it once.

I: So, it seems that it helped you, coming to that conclusion?

R: Yeah.

I: And, um, did it hurt you in any way at all?

R: Probably not; no.

I: Okay, then at the next point, the intern [xxxx] came back. And you said he was angry and upset because they had done it while he was gone. Right?

R: Yeah.

I: Okay. And at that point, let's see, you had a couple of, one main feeling and one main conclusion. You said you felt angry at him--

R: Yeah.

I: --and upset with him. What led you to feel that way at that point?

R: Just the fact that he didn't bother to explain it in the beginning and then he thought he would be able to come back and perform this procedure on me?? I mean, that's completely wrong; I mean, you don't do that to a person. So, I mean, I'm an extremely logical person; I like when things are logic. And, I mean, that was so illogical to me, the fact that he didn't even bother to tell me, and then all of a sudden he wants to do it? I don't think so!

I: Yeah.

R: I mean, that's. . . not right.

I: Okay. So, um, can you tell me more about how that connected with your life? You said you're a logical person. . .

R: Yeah, I mean, I like when. . . I mean, he was just. . . I didn't like the fact. . . I mean, whenever I meet someone like that who just expects something, but they don't bother to explain, I just, I get upset at them, because I don't see why they should even, they don't have the right to do something to me if they don't bother to explain it!

I: Mm hm.

R: And I was basically--that's why--when I ask, like, when I get my finger stuck now, I'll ask: I'm like how much do you, how many, what's the vial look like, because, I mean they're little vials, but I like to know! And like if they don't explain, I'm like--I won't let them prick my finger until they tell me. Because I want to know! I mean, yeah, a lot of the people think I'm obnoxious and I'm rude--

TAPE 3, SIDE A (3/6/97)

R: I mean, like once I, they told me my patients' rights, I really took advantage, I took advantage of them, because I didn't want anyone to take advantage of me. Because I was old enough to understand what they meant, and so, I mean, if they didn't explain to me, I was just like, "No! (laugh) You're not doing it; I'm sorry!"

I: Okay. Um, I'm just curious as an aside, you know, just talking about that: you know, once they, you knew your patients' rights--

R: Mm hm.

I: --and that you feel, I mean, some people might call you obnoxious or--

R: A lot of them did. Most of the nurses hated me! (joint laughter). Because they didn't know my personality. I'm a kidder; I'm a joke. I love to make jokes and everything. And, like, they just couldn't figure that out, because whenever they were around me, they wanted to--they would come in and be like, "You have to take this medicine," and I would be like, "No!" Because I'm a person who needs time to think about the medicine before I take it.

I: Uh huh.

R: I mean I can't all of a sudden, someone can't say, "You have to do this right now." I need time to adjust to the situation. And so a lot of the nurses hated that. Finally they figured, if they want me to take medicine, come in an hour before I have to take it, and it will be done! I never didn't, I always did it. It just took me longer (laugh) than most people to do it, (joint laughter) which they really found annoying.

I: Yeah. Hmm.

R: So . . . I always did everything they told me to.

I: Can you think of why you might, you know, what makes you that way? Like, how did you have such a feeling of being able to take charge and not do what you were told at every point?

R: Because I had basically always been in charge of my life. And when I was diagnosed with leukemia, basically your life is, the control of your life is taken away and placed in the hands of the doctors. And I hated that. I like to have control over my life. I like to know what I'm doing and when I'm doing it, and when I want to do it. And so, I had to take control of some situations, because I just felt like the old me, the athletic, the everything me, was put in a box, and this new person existed, a sick person with no control over their life. And I just needed to get that old person back. (pause) But it never actually came back, and I like the new me. 'Cause I've changed so much because of it, I like myself a lot, I love myself more than I did before I got sick. I'm a much happier person. And so, I think a lot of good came out of me taking control over my life because that gave me the confidence that I can take control over my life. I can, I have the right to tell people, "No, you can't do this." I mean, just the other day, when I had to get my finger stuck at this new place, they wanted to take it out of my arm! It wasn't my choice to get my finger, to get blood taken there; I liked it at Children's. And, I'm like, "No! For the past three years, I've had it out of my finger. I expect it to continue this way." And now I have a standing order; I changed it. Because, usually they don't do that for kids my age, and . . . but I knew that if I hadn't said something, they would have been just taking it out of my arm for the rest of the time I have to get blood taken, and I didn't want that. So, that's one way that I took control over my life in the future, because I knew what I had the right to do; I had the right to tell them, "No. I want a finger stick, not out of the arm."

I: Did you feel, do you think you were as much of an in control kind of person before you were sick?

R: Nope. I just let people do whatever they wanted to me. They could do anything to me, basically, and I wouldn't--I'd get mad at them, but I wouldn't say anything. I would think it in my mind, but I would never, I was never as vocal as I am. No.

I: What do you think, I mean, like, you know, was it--you mentioned having your patients' rights read to you.

R: Mm hm.

I: Was that a big thing? I mean, was that--what do you think made the difference, what do you think made you change?

R: Just the fact that I knew that I had the right to tell these nurses. 'Cause I always felt like, okay, the nurses, that's their job, they have to tell me what to do. But then like--I don't know how I came upon these patients' rights. I think they were like on a wall somewhere, and I was reading them.

I: Oh. . .

R: And, um, and once I knew that, I was just like, now I can, I have the right to tell these nurses, I want somebody else. I mean, there were some times that I didn't like the nurse I had, and I would ask for a different person, so I mean (laugh) . . .

I: And you said that it was feeling out of control--

R: Yeah. You're life was, my life was so messed up when I was diagnosed, it wasn't, it was just a new life, basically. And I wanted some control, because I had none. So I needed to get it back.

I: But it changed you; you said you wanted the old you back but you didn't get the old you back. You got a new you that you like better.

R: Yeah. I'm so, I'm a lot happier than I ever was. And I don't, I don't do a lot of stuff that I did before, so . . . . It just changed me so. . .

I: What is it you like better about yourself now?

R: I'm more honest with myself. I don't have to, like, pretend. I'm myself, and I don't care. If somebody doesn't like the way I am, it's not my fault, it's their fault. So, I mean, I just go, I just basically act myself wherever I am, no matter where I am.

I: Mm hm.

R: And I never used to do that. I always used to, I was quiet--I'm still quiet and everything, depending on who I'm with, but when I'm with people I know and I like, I'm just so crazy it's not even funny, so . . .

I: So what do you think made you change so much?

R: The fact that I was more honest with myself; I was never really, I was always like, "Oh, I'm not pretty, I'm not this, I'm not that." Because I never had any, like, I never had anything in common with anybody. When I was diagnosed, I knew that I would never have anything in common with these people. So it made me realize, why should I try when I'm never going to have anything in common with some people.

I: Mm hm.

R: I mean it's, especially when you have disease, because like all my friends, when I was diagnosed, they just basically rejected me. (laugh) No one called, not even my best friend. I think she was--I think she was in shock, and I don't blame her. I don't blame any of them, because I mean, how would you react if you were in their situation? I mean, I don't blame anybody, but like, everybody just--deserted me. And so I knew then that you have to choose your friends carefully. You have to just, I mean, if they don't like you, it's their fault. I mean, there was nothing I could do without--what could I do? Call them up and say, "Do you want to come over?" I mean, half of them were terrified of me.

I: Mm hm.

R: I mean, when I would go and visit them during classes, they'd, people would be like, "Oh, how are you feeling?" But that's basically it. I mean they hated talking to me, because I would be standing right next to my mom, and my mom would be talking to my classmates, and they would ask my mom, "How's [respondent's name] doing?" And I was standing right there! I don't know if it was they didn't recognize me, or the fact that they just didn't want to, they didn't know how to ask me. And it was just, I had to laugh every time that happened. I mean, that happened so often. That someone would ask my mom when I would be standing right there. I mean, and that hurts. . . because I mean, yeah, you still are a normal person even though you have leukemia, but nothing has changed, nothing really changed. I was still me, I was still [respondent's name], not some other person.

I: Right. Hm. So it really made you look at things differently--

R: Yeah.

I: And look at people differently and see yourself in a different way--

R: Yeah.

I: An honest kind of way, you said.

R: Yeah. And I realized adults are a lot more caring than, hm, kids. I mean, in my neighborhood, all the people I know are adults. I have no friends in this neighborhood who are children, who are people--who are kids my age. I mean, probably because none of them go to my neighborhood, but I'm more, I like adults better I think, than people my age (laugh). So, that's one thing that came out of it, because the adults seemed to care more.

I: Yeah. Did you feel, um, in situations like in the hospital or in doctor's appointments, were there times when people would ask your mom how you were doing rather than asking you?

R: No, because they basically knew--all the like doctor's, they--they'd ask me. It was basically the neighbors, the friends, like the relatives would ask my mom, not me. But like all the doctors would ask me and everybody in the hospital situation would ask me, but. . . it was everybody else! (laugh).

I: Yeah. Okay. Um, all right, well back to your situation here, um, at this point, you were talking about that the intern came back and he was angry and upset--

R: Mm hm.

I: And that you were upset and angry at with him. You talked about that. And then, you know, your basic conclusion with that was that he deserved not to do the tap.

R: Yeah.

I: That was your feeling on that. What led you to that conclusion?

R: Just the fact the way he treated me at the beginning. I don't, you don't have the right to treat somebody like that and then expect them to do something for--then have them have you do something, I mean. . .

I: Okay. Um, and how did that conclusion connect with your life, with your past or your present or your future?

R: Probably you have the, I mean, you have to, you can put up with so much, but you can't always put up with everything that's thrown at you. And so I, I mean when somebody's done something too much to me, I'm just like, "Stop it. Now." But before I usually probably would have just let them continue, gotten upset inside, and then gone and cried about it in the--after they left, but now I would say, I would say something before it got too far.

I: Okay. Did you say it to him at that time? When you came to this conclusion that he deserved not to do it?

R: I didn't say that, but I probably said, "No you didn't, you're not doing it; she did it." So. . .

I: Um, did coming to that conclusion have consequences or impacts?

R: Just probably made him madder. (laugh). Didn't do anything to me, but he probably got a little ticked off at me for . . . .

I: Hm. Did it help you, coming to that conclusion?

R: (pause). No, not really. Probably didn't do anything, it had no effect on me probably.

I: It didn't help you or hurt you?

R: None.

I: What leads you to say that?

R: (pause) I don't know (laugh).

I: Okay. All right. Um, then you said that later in the day that [xxxx] came back to take your blood.

R: Mm hm.

I: And that um--

R: It might have been, I don't know if it was that day, or something--like, that, in my first two weeks that I was diagnosed he came and saw me again. I'm assuming it was the same week, because usually they're only there for a week or so.

I: Okay.

R: So, I don't know. But he did come back (laugh).

I: He came back, sometime soon (joint laughter).

R: Yeah, it was, it was. . . a little while after; I don't know if it was the day, or a couple days, or something like that.

I: Okay. So, your bed was against the wall, and um, let's see, you wondered, "Why is he back?" and "Why is he doing this?" and then, um, you said that you were upset again, you got upset again because he was back. So what led you to feel upset at that point?

R: Because, he again didn't treat me with any respect. I mean, before that, I had gotten my blood taken before, people had come--every morning they'd come and prick your finger for a blood test. Every day they would pull my bed out from the wall. This guy--I would have my blood taken by the same person--he was great, I loved him, he was so good at it. Every day he would pull my bed out from the wall. I did not understand why [xxxx] wouldn't do it when everybody else had!

I: Yeah.

R: And that just made me upset: the fact that he was just so stupid that he didn't do it, and had me turn around.

I: Mm hm. And even before he asked you to turn around--I mean, at this point, you just, you know this was when he first came in--

R: Mm hm.

I: --and, you know, your bed was against the wall, but he came in and said that he was gonna--

R: Just the fact that he was there upset me (laugh).

I: Uh huh (joint laughter).

R: 'Cause I did not like him from the beginning because of the way he treated me.

I: Okay.

R: So I mean, just his presence made me upset.

I: Okay. Um, so that feeling of being upset at that point when he came back, how did that connect with your life?

R: (pause). (laugh). No way, just--he has no influence on my life anymore except the fact that he, I don't trust people.

I: So that--did feeling upset at that point help you in any way?

R: No, it probably just made me like just madder and madder that he was gonna do it and that he didn't--that I knew he didn't treat, he didn't have any bedside manners, and I had figured that out already. And I knew that he, I was just mad that he was, he wanted to do it.

I: Mm hm.

R: Because I didn't--he didn't--I'd say he didn't deserve the right to do anything to me because of the way he would treat me.

I: Right.

R: I mean you have to treat someone with respect if you want to do something with the person. So. . .

I: And did it hurt you having that feeling, at that time?

R: Just the fact that he--I was more, I just got more upset, more--and in that whole cycle of upset and (laugh). Whenever I'm upset, I always get more upset, more upset, and more upset, the more I think about it, and so I'm just in this big cycle of like, everything.

I: Right. Okay, um, is there any way that it could have, that you could have been helped at that point?

R: If it had been any other person but him! (laugh).

I: Okay. All right. Okay, so then he said that, uh, you had to turn around in bed so that the blood could be taken from your right arm.

R: Yeah.

I: Instead of pulling out the bed.

R: Yeah, and that was even illogical, because if, because your bed, in a hospital, your like head, you can make your head like higher than your legs. And like, if you're sitting in the bed correctly, the blood will flow to your arm because your hand is lower than the rest of your body.

I: Yeah.

R: Well, if you turn upside down, your hand is basically higher than your rest of your arm so the blood will drain, which doesn't make sense. That was also a factor when I was thinking about it, when, I mean, if you think about it, you should, you have to go with the gravity, and he was going against it, so I mean that's probably one reason why he couldn't get any blood, because he was draining my arm, so. . .

I: Yeah. (joint laughter). So you said that, um, you know, your reaction was that your back hurt--

R: Yeah.

I: --too much for you to turn around, but he said you had to turn around, so you did it anyway.

R: Yeah. 'Cause I didn't know my rights, really, at that--I didn't know about my rights until, probably till I started clinic visits.

I: Oh.

R: But I knew I had the right to tell some people some things.

I: Uh huh.

R: But not everybody.

I: Right.

R: And I, I knew I had the right to tell nurses things, but not like doctors and interns and stuff because I thought they were like, had higher authority.

I: Uh huh.

R: So I didn't know what I could--

I: So you thought you couldn't protest, you just did--

R: Yeah. And even if I did, I don't think he would have done anything, because of the way he had acted before.

I: Okay. Okay, so you said at that point, um, you know, you had these questions--why is he so stupid, and you wondered why he wanted you to turn upside down and all that--and then you said that you were very angry, really mad.

R: Yeah. Because he, because my back was in so much pain, and when someone is in pain, you don't ask them to do something! I mean, the nurses, yeah they force you to do stuff--I mean, they finally forced me to get out of bed. Because, I mean, I, my back had hurt for two months completely, two months straight, before I had gone into the hospital and was diagnosed. And I had, in my mind I knew if I moved it would hurt because that's how it always had been: if I move, it hurts. And I just had that little (laugh) equation in my head: moving hurts! And so, I was like, finally, so, like just knowing that I was gonna have to move that much, even just to turn around in my bed, I knew I would have a lot of pain.

I: Hm.

R: And so, I mean that was my problem with the nurses, when they finally--when like they had fixed my back problem, I didn't believe them because I still had that "moving hurts" thing, so they had to get me moving so I would realize: "My back doesn't hurt any more." So, I mean, but that was basically a major part in it, the fact that I knew if I moved, it would hurt.

I: Right. At that point, you knew it would.

R: Yeah, it wasn't fixed or anything. I mean I was in (pause)

I: Yeah, you said your back was killing you at that point.

R: Yeah.

I: And you were in a lot of pain. And so, it made you angry, with him wanting you to move.

R: I hated anybody who wanted me to move, basically. Not just him (laugh), but everybody, anybody who wanted me to move anything other than my arms and my legs. . . (pause; sigh of exasperation, hands thrown up).

I: You were mad at them!

R: Yeah! (laugh). But I was especially mad at him, just because the way he wanted me to move; it was the dumbest way you would think.

I: Okay. All right, and how did have this feeling of being angry relate to your life before that, anything that had happened recently or things that had happened before that?

R: Probably the fact that I get angry at people who want me to do stuff that I don't want to do, or they try to force me into doing things that I don't want to do. I get mad at people like that, because they don't have the right to force me to do anything that I don't want to do.

I: Okay. And did you see that feeling relating to your future in any way? Or do you now see it relating to your future?

R: (pause) Just the same way that--they have. . . just, what I said before (joint laughter).

I: All right. Um, okay--and this may be repetitious or it might be something different--did it have consequences or impacts, at that point, being angry at him at that time?

R: (pause) It probably--because, whenever you're angry, you're--I get tense. And being tense doesn't help when you're trying to get a vein. I mean, (laugh) that's one of the, that's really bad when you're trying to find thin, small veins that move around, I mean you (laugh) don't want to be tense!

I: Uh huh.

R: And so, I think that probably played an effect in why he couldn't do it, because he, he wasn't that experienced in it. So. . .

I: Hm. So, you think it hurt you, then, being angry?

R: Yeah, because the more I was angry the more he poked and prodded and everything, and that, the more he did that the more it hurt. And so, it was just a little cycle there: I was angry, he hurt me. . . so. . .

I: Did it help