VIII - Hope
In desperate hope 1 go and search for her in all the corners of my room; I find her not.
My house is small and what once has gone from it can never be regained.
But infinite is thy mansion, my lord, and seeking her I have come to thy door.
I stand under the golden canopy of thine evening sky and I lift my eager eyes to thy face.
I have come to the brink of eternity from which nothing can vanish-no hope, no happiness, no vision of a face seen through tears.
Oh, dip my emptied life into that ocean, plunge it into the deepest fullness. Let me for once feel that lost sweet touch in the allness of the universe.
Tagore, from Gitanjali, LXXXVII
We have discussed so far the different stages that people go through when they are faced with tragic news-defense mechanisms in psychiatric terms, coping mechanisms to deal with extremely difficult situations. These means will last for different periods of time and will replace each other or exist at times side by side. The one thing that usually persists through all these stages is hope. Just as children in Barracks L 318 and L 417 in the concentration camp of Terezin maintained their hope years ago, although out of a total of about 15,000 children under fifteen years of age only around 100 came out of it alive.
The sun has made a veil of gold
So lovely that my body aches
Above, the heavens shriek with blue
Convinced I've smiled by some mistake.
The world's abloom and seems to smile.
I want to fly but where, how high?
If in barbed wire, things can bloom
Why couldn't I? I will not die!
1944, Anonymous "On a Sunny Evening"
In listening to our terminally ill patients we were always impressed that even the most accepting, the most realistic patients left the possibility open for some cure, for the discovery of a new drug or the "last-minute success in a research project," as Mr. J. expressed it (his interview follows in this chapter). It is this glimpse of hope which maintains them through days, weeks, or months of suffering. It is the feeling that all this must have some meaning, will pay off eventually if they can only endure it for a little while longer. It is the hope that occasionally sneaks in, that all this is just like a nightmare and not true; that they will wake up one morning to be told that the doctors are ready to try out a new drug which seems promising, that they will use it on him and that he may be the chosen, special patient, just as the first heart transplant patient must have felt that he was chosen to play a very special role in life. It gives the terminally ill a sense of a special mission in life which helps them maintain their spirits, will enable them to endure more tests when everything becomes such a strain-in a sense it is a rationalization for their suffering at times; for others it remains a form of temporary but needed denial.
No matter what we call it, we found that all our patients maintained a little bit of it and were nourished by it in especially difficult times. They showed the greatest confidence in the doctors who allowed for such hope-realistic or not-and appreciated it when hope was offered in spite of bad news. This does not mean that doctors have to tell them a lie; it merely means that we share with them the hope that something unforeseen may happen, that they may have a remission, that they will live longer than is expected. If a patient stops expressing hope, it is usually a sign of imminent death. They may say, "Doctor, I think I have had it," or "I guess this is it," or they may put it like the patient who always believed in a miracle, who one day greeted us with the words, "I think this is the miracle-I am ready now and not even afraid any more." All these patients died within twenty-four hours. While we maintained hope with them, we did not reinforce hope when they finally gave it up, not with despair but in a stage of final acceptance.
The conflicts we have seen in regard to hope arose from two main sources. The first and most painful one was the conveyance of hopelessness either on part of the staff or family when the patient still needed hope. The second source of anguish came from the family's inability to accept a patient's final stage; they desperately clung to hope when the patient himself was ready to die and sensed the family's inability to accept this fact (as illustrated in the cases of Mrs. W. and Mr. H.).
What happens with the "pseudo-terminal syndrome" patient who has been given up by his physician and then-after being given adequate treatment-makes a comeback? Implicitly or explicitly these patients have been "written off." They may have been told that "there is nothing else we can do for you" or they may just have been sent home in unexpressed anticipation of their imminent death. When these patients are treated with all available therapy, they will be able to regard their comeback as "a miracle," "a new lease on life," or "some extra time I did not ask for," depending on previous management and communications.
The relevant message that Dr. Bell º communicates is to give each patient a chance for the most effective possible treatment and not to regard each seriously ill patient as terminal, thus giving up on them. I would add that we should not "give up" on any patient, terminal or not terminal. It is the one who is beyond medical help who needs as much if not more care than the one who can look forward to another discharge. If we give up on such a patient, he may give up himself and further medical help may be forthcoming too late because he lacks the readiness and spirit to "make it once more." It is far more important to say, "To my knowledge I have done everything I can to help you. I will continue, however, to keep you as comfortable as possible." Such a patient will keep his glimpse of hope and
* See Bibliography.
continue to regard his physician as a friend who will stick it out to the end. He will not feel deserted or abandoned the moment the doctor regards him as beyond the possibility of a cure.
The majority of our patients made a comeback, in some way or another. Many of them had given up hope of ever relating their concerns to anyone. Many of them felt isolated and deserted, more of them felt cheated out of the opportunity of being considered in important decisions. Approximately half of our patients were discharged to go home or to a nursing home, to be readmitted later on. They all expressed their appreciation of sharing with us their concern about the seriousness of their illness and their hopes. They did not regard their discussions of death and dying as either premature or contraindicated in view of their "comeback." Many of our patients related the ease and comfort of their return home, after having settled their concerns prior to their discharge. Several of them asked to meet with their families in our presence before going home, in order to drop the façade and to enjoy the last few weeks together fully.
It might be helpful if more people would talk about death and dying as an intrinsic part of life just as they do not hesitate to mention when someone is expecting a new baby. If this were done more often, we would not have to ask ourselves if we ought to bring this topic up with a patient, or if we should wait for the last admission. Since we are not infallible and can never be sure which is the last admission, it may just be another rationalization which allows us to avoid the issue.
We have seen several patients who were depressed and morbidly uncommunicative until we spoke with them about the terminal stage of their illness. Their spirits were lightened, they began to eat again, and a few of them were discharged once more, much to the surprise of their families and the medical staff. I am convinced that we do more harm by avoiding the issue than by using time and timing to sit, listen, and share.
I mention timing because patients are no different from the rest of us in that we have our moments when we feel like talking about what burdens us and times when we wish to think about more cheerful things, no matter how real or unrealistic they are. As long as the patient knows that we will take the extra time when he feels like talking, when we are able to perceive his cues, we will witness that the majority of patients wish to share their concerns with another human being and react with relief and more hope to such dialogues.
If this book serves no other purpose but to sensitize family members of terminally ill patients and hospital personnel to the implicit communications of dying patients, then it has fulfilled its task. If we, as members of the helping professions, can help the patient and his family to get "in tune" to each other's needs and come to an acceptance of an unavoidable reality together, we can help to avoid much unnecessary agony and suffering on the part of the dying and even more so on the part of the family that is left behind.
The following interview with Mr. J. represents an example of the stage of anger and demonstrates-at times in a disguised way-the phenomenon of ever-present hope.
Mr. J. was a fifty-three-year-old Negro man who was hospitalized with mycosis fungoides, a malignant skin disorder which he describes in detail in the following interview. This illness necessitated his resorting to disability insurance and is characterized by states of relapses and remissions.
When I visited him the day before our seminar session, the patient felt lonely and in a talkative mood. He related very quickly in a dramatic and colorful fashion the many aspects of this unpleasant illness. He made it difficult for me to leave and held me back on several occasions. Much in contrast to that unplanned meeting, he expressed more annoyance, at times even anger, during the session behind the one-way mirror. The day before the seminar session he had initiated the discussion of death and dying, whereas during the session he said, "I don't think about dying, I think about living."
I mention this since it is relevant to our care of terminally ill patients, that they have days, hours, or minutes when they wish to talk about such matters. They may, like Mr. J. the day before, volunteer their philosophy of life and death and we may consider them ideal patients for such a teaching session. We tend to ignore the fact that the same patient may wish to talk only about the pleasant aspects of life the next day; we should respect his wishes. We did not do this during the interview, as we attempted to regain some of the meaningful material he presented the day before.
I should say that this is a danger mainly when an interview is part of a teaching program. Forcing questions and answers for the benefit of students should never occur during such an interview. The person should always come first and the patient's wishes should always be respected even if it means having a classroom of fifty students and no patient to interview.
DOCTOR: Mr. J., just for the introduction, how long have you been in the hospital?
PATIENT: This time I've been in since April the 4th of this year.
DOCTOR: How old are you?
PATIENT: I'm fifty-three years old.
DOCTOR: You have heard what we are doing in this seminar?
PATIENT: I have. Will you lead me with questions?
DOCTOR: Yes.
PATIENT: All right, you just go right ahead, whenever you are ready.
DOCTOR: I'd be curious to get a better picture of you because I know very little about you.
PATIENT: I see.
DOCTOR: You have been a healthy man, married, working, ah -
PATIENT: That's right, three children.
DOCTOR: Three children. When did you get sick?
PATIENT: Well, I went on disability in 1963. I think I first came in contact with this disease around 1948. I first started out with small rashes on my left chest, and under my right shoulder blade. And first it was no more than what anybody gets in the course of a lifetime. And I used the usual ointments, calamine lotion, vaseline, and different things that you buy in the drug store. Didn't bother me too much. But gradually by, I'd say by 1955, the lower part of my body was involved, not to any great extent.
There was a dryness, a scalyness had settled in, and I'd use a lot of greasy ointments and things like that to keep myself moist and as comfortable as possible. I still kept on working. In fact, certain periods through there I had two jobs because my daughter was going to college and I wanted to make sure that she finished. So I'd say by 1957 it had reached a point where I had started going to different doctors. I went to Dr. X for a period of about three months and he didn't make any improvement. The visits were cheap enough, but the prescriptions were about fifteen to eighteen dollars a week. When you are raising a family of three children on a workman's salary, even if you are working two jobs, you can't handle a situation like that.
And I did go through the clinic and they made a casual examination which didn't satisfy me. I didn't bother to go back to them. And I just knocked around, feeling, I guess, more and more miserable all the time until in 1962 Dr. Y had me admitted to the P. Hospital. I was in there about five weeks and really nothing happened and I came out of there and finally went back to the first clinic. Finally in March of 1963 they admitted me to this hospital. I was in such bad shape by then that I went on disability.
DOCTOR: This was in '63?
PATIENT: In '63.
DOCTOR: Did you have any idea what kind of glen you had by then?
PATIENT: I knew it was mycosis fungoides and everybody else knew it.
DOCTOR: So, how long did you know the name of your illness?
PATIENT: Well, I was suspicious of it for some time, but then it was confirmed by a biopsy.
DOCTOR: A long time ago?
PATIENT: Not a long time ago, just a few months before the actual diagnosis was made. But you get one of these conditions and you read everything you can get your hands on. You listen to everything, and you learn the names of the different diseases. And from what I read, mycosis fungoides fit right into the picture and finally it was confirmed, and by then I was just about shot. My ankles had started to swell up on me, I was in a constant state of perspiration, and I was thoroughly miserable.
DOCTOR: Is that what you mean by "by then I was thoroughly shot?" That you felt so miserable? Is that what you mean?
PATIENT: Sure. I was just miserable-itching, scaling, perspiring, ankle hurting, just a completely, thoroughly, utterly miserable human being. Now, of course, these kind of times you get a little resentful. I guess you wonder, why does this happen to me. And then you come to your senses, and you say, "Well, you are no better than anybody else, why not you?" That way you can sort of reconcile yourself because then everybody you see you start looking at their skin. You look if they have any blemishes, any signs of dermatitis since your whole sole interest in life is to see if they have any blemishes and who else is suffering from something similar, you know. And I guess, too, people are looking at you because you're much different-looking from them
DOCTOR: Because this is a visible kind of illness.
PATIENT: It is a visible kind of an ailment.
DOCTOR: What does this illness mean to you? What is this mycosis fungoides to you?
PATIENT: It means to me that up to now they haven't cured anybody. They have had remissions for certain periods of time, they have had remissions for indefinite periods of time. It means to me that somewhere, someone is going to do research. There are a lot of good brains working on this condition. They might discover a cure while in the process of working on something else. And it means to me that I grit my teeth and go on from day to day and hope that some morning I'll sit up on the side of the bed and the doctor will be there and he will say, "I want to give you this shot," and it will be something like a vaccine or something, and in a few days it will clear up.
DOCTOR: Something that works!
PATIENT: I will be able to go back to work. I like my job because I did work myself into a supervisory capacity.
DOCTOR: What did you do?
PATIENT: Actually, I was active general foreman in the main post office down here. I had worked myself to the point where I was in charge of the foremen. I had seven or eight foremen who accounted to me every night. Rather then dealing with just the help, I dealt with more or less operations. I had good prospects for advancement because I knew and enjoyed my work. I didn't begrudge any time that I spent on the job. I was always helping my wife when the kids were getting up.
We hoped they would be out of the way and maybe we could enjoy some of the things that we had read about and heard about.
DOCTOR: Like what?
PATIENT: Traveling a little, I mean we never had a vacation. Our first child was a premature baby and it was touch and go for a long time. She was sixty-one days old before she came home. I still have a sack of receipts from the hospital at home now. I paid her bill out at two dollars a week and in those days I was only making about seventeen dollars a week. I used to get off the train and rush two bottles of my wife's breast milk to the hospital, pick up two empty bottles, come back to the station, and go on to my job in the city. I would then work all day and bring those two empty bottles home at night. And she had enough milk for, I guess, for all the premature kids in the nursery over there. We kept them pretty well supplied and this meant to me that we got over the hump with everything. I would soon be in a salary bracket where you don't have to pinch every nickel. It just meant for me that we would maybe sometime look forward to a planned vacation instead of, well, we can't go anywhere, this kid has to have some dental work, or something like that. That's all it meant to me. It meant a few good years of more or less relaxed living.
DOCTOR: After a long, hard life of trouble.
PATIENT: Well, most people put in a longer and harder struggle than I do. I never considered it much of a struggle. I worked in that foundry and we did piece work. I could work like a demon. I had fellows that came to my house and told my wife that I worked too hard. Well, she jumped all over me about that, and I would tell her it was a matter of jealousy when you work around men with muscle, they don't want you to have more muscle than they have and I definitely did, because wherever I went to work, I worked. And whenever there was any advancement, I made it, whatever advancement there was to be made. In fact, they called me into the office over where I was working and they told me when we make a colored foreman, you will be it. I was elated for a moment but when I went out-they said when-that could be anywhere
from now to the year two thousand. So it deflated me to an extent that I had to work under those conditions. But still nothing was hard for me in those days. I had plenty of strength, I had my youth, and I just believed I could do anything.
DOCTOR: Tell me, Mr. J., now that you are not that young anymore, and maybe you can't do all those things anymore, how do you take it? Presumably there is no doctor who stands there with an injection, a medical cure.
PATIENT: That's right. You learn how to take these things. You first get that realization that maybe you won't ever get well.
DOCTOR: What does that do to you?
PATIENT: It shakes you up, you try not to think about things like that.
DOCTOR: Do you ever think about it?
PATIENT: Sure, there are a lot of nights I don't sleep very well. I think about a million things during the night. But you don't dwell on those things. I had a good life as a child and my mother is still living. She comes out here quite often to see me. I can always run back over my mind and go over some incident that happened. We used to take the jalopy and travel within our area. We did quite a bit of traveling in those days when they had very few paved roads and the other roads were muddy. You'd get somewhere, stuck on a muddy road up to the hubcaps, and you might have to push or pull or something like that. And so I guess I had a pretty nice childhood, my parents were very nice. There was no harshness or ill temper in our house. It made for a pleasant life. I think in terms of those things and I realize I'm pretty well blessed because there has been a rare man put in this world who has nothing but misery. I look around and find that I have had what I call a few bonus days.
DOCTOR: You have had a fulfilled life is really what you are saying. But does it make dying any easier?
PATIENT: I don't think about dying. I think about living. I think, you know I used to tell the kids, they were coming up, I would tell them now, do your best under all circumstances, and I said lots of times you are still gonna lose. I said, now you remember in this life you have to be lucky. That was an expression I used.
And I always considered myself lucky. I look back and I think of all the boys who came along with me and are in jail and various prisons and places like that. And I had as good a chance as they had but I didn't make it. I always pulled away when they were about to get started into something that wasn't right. I had a lot of fights on account of that, they think you are afraid. But it is better to be leary of those things and fight for what you believe in, then it is to kick in and say, well, I'll go along. Because invariably sooner or later you are involved in something that can start you off on a life that you can't reverse.
Oh, they say you can pull yourself up by your boot straps and all that but you get yourself some kind of a record and the first thing that happens in your neighborhood, and I don't care how old you get to be, they pick you up and want to know where were you such and such a night. I was fortunate enough to steer clear of all of that. So when I look it all over I have to say that I've been lucky and I project that a little further. I still have a little luck left. I mean, I have had some rough luck you might call it, so sooner or later this thing has to even out and that's going to be the day that I walk out of here and people won't even recognize me.
DOCTOR: Is this what kept you from ever getting desperate?
PATIENT: Nothing keeps you from ever getting desperate. I don't care how well adjusted you are, you will get desperate. But I will say this has kept me from the breaking point. You get desperate. You get to a place where you can't sleep and after a while you are fighting it. The harder you fight it, the harder it is on you, because it can actually get to be a physical battle. You will break out into a sweat just as though you are exerting yourself physically but it's all mental.
DOCTOR: How do you fight it? Does religion help you? Or certain people help you?
PATIENT: I don't call myself a particularly religious man.
DOCTOR: What gives you the strength to do this for twenty years? It's just about twenty years isn't it?
PATIENT: Well, yes, I guess your sources of strength come from so many different angles it would be pretty hard to say. My mother has a deep abiding faith. Any effort that I give this thing less than my full effort, I would feel that I am letting her down. So I say with the help of my mother. My wife has a deep abiding faith, so it is also with the help of my wife. My sisters, it always seems to be the females in the family who have the deeper religion, and they are the ones who are, I guess, the most sincere in their prayers. To me, the average person praying is begging for something. Always had too much pride to actually beg. I think maybe that's why I can't put all the full feeling into what I say here. I can't give vent to all my feelings along those lines, I guess.
DOCTOR: What did you have as a religious background, Catholic or Protestant ... ?
PATIENT: I'm a Catholic now, I was converted Catholic. One of my parents was Baptist and one was Methodist. They made it fine.
DOCTOR: How did you become a Catholic?
PATIENT: It seemed to fit into my idea of what a religion should be.
DOCTOR: When did you make that change?
PATIENT: When the kids were small. They went to Catholic schools. In the early '50's I figure.
DOCTOR: Was this in any way connected with your illness?
PATIENT: No, because at the time the skin didn't bother me too much and I just thought that as soon as I get a chance to settle down and go to a doctor this will be cleared up, you know?
DOCTOR: Ah
PATIENT: But it never happened like that.
DOCTOR: Is your wife Catholic?
PATIENT: Yes, she is. She was converted at the time I was.
DOCTOR: Yesterday you told me something. I don't know if you want to bring it up again. I think it would be helpful. When I asked you how you take all this, you gave me the whole scale of possibilities of how a man can become-ending it all and thinking about suicide, and why this is not possible for you. You mentioned also a fatalistic approach, can you repeat that again?
PATIENT: Well, I said that I had a doctor once who told me, "I couldn't, I don't know how you take it. I'd kill myself."
DOCTOR: That was a doctor who said that?
PATIENT: Yes. So then I said, killing myself is out because I'm too yellow to kill myself. That eliminates one possibility that I don't have to think about. I finally rid my mind of encumbrances as I go on, so that I have less and less and less to think about. So I eliminated the idea of killing myself by the process of eliminating death. Then I reached the conclusion that, well, you're here now. Now you can either turn your face to the wall or you can cry. Or you can try to get whatever little fun and pleasure out of life you can, considering your condition. And certain things happen.
You may watch a good TV program or listen to interesting conversation and after a few minutes you are not aware of the itching and the uncomfortable feeling. All these little things I call bonuses and I figure that if I can have enough bonuses together one of these days everything will be a bonus and it will stretch out to infinity and every day will be a good day. So I don't worry too much. When I have my miserable feelings I just more or less distract myself or try to sleep. Because after all, sleep is the best medicine that has ever been invented. Sometimes I don't even sleep, and I just lie there quietly. You learn how to take these things, what else can you do? You jump up and scream and holler and you can beat your head against the wall, but when you do all that you're still itching, you're still miserable.
DOCTOR: It's the itching that seems to be the worst part of your illness. Do you have any pain?
PATIENT: So far the itching has been the worst, but right along the bottom of my feet it is so sore that it's like torture to put any weight on them. So I'd say up to now the itching, and the dryness and the scaliness has been my biggest problem. I have a personal warfare on these scales. It gets to be a funny thing. You get your bed full of scales and you make a brush like that, and ordinarily any kind of debris just sails right off. The scales jump up and down in one place like they have claws and it gets to be a frantic effort.
DOCTOR: To get rid of them?
PATIENT: To get rid of them, because they will fight you to a standstill. You'll be exhausted and you'll look and they are still there. So I even thought about a small vacuum cleaner, to keep myself clean. Staying clean gets to be an obsession with you because by the time you take a bath and put all this goo on you, you don't feel clean anyway. So right away you feel like you need another bath. You could spend your life going in and out of the bath.
DOCTOR: Who is most helpful in this trouble? As long as you are in the hospital, Mr. J?
PATIENT: Who is the most helpful? I'd say you couldn't meet anybody around here, everybody, they anticipate my needs and help. They do a lot of things I don't even think about. One of the girls noticed that my fingers were sore and I was having trouble lighting a cigarette. I heard her tell the rest of the girls, "When you come through here you check with him and see if he wants a cigarette." Why, you can't beat that.
DOCTOR: They really care.
PATIENT: You know, it's a wonderful feeling but everywhere I have been and all through my life, people have liked me. I am profoundly thankful for that. I am humbly thankful. I have never gone out of my way, I don't think, to be a do-gooder. But I can find any number of people in this city who could point out times on various jobs that I helped them out. I don't even know why, it was just a part of me to put a person mentally at ease. I would go to the effort to help this person adjust himself. And I can find so many people and they tell other people how I helped them.
But by the same token everybody I have ever known has helped me. I don't believe I have an enemy in the world. I don't believe I know a person in the world who wishes me any kind of harm. My roommate from college was here a couple of years ago. We talked about the days we were in school together. We remembered the dormitory when at any hour of the day someone would make a suggestion, let's go down and turn out so-and-so's room. And they would come down and throw you out bodily, out of your own room. Good clean horseplay, rough, but good fun. And he was telling his son how we used to stand them off and stack them up like cord wood. We were both strong we were both the tough type. And we would actually stack them up in that hall, they never turned our room out.
We had one roommate in there with us and he was on the track team and he ran the hundred-yard dash. Before five guys came in the door he could get out of that door and down that hall, was about seventy yards long. Nobody could have had him once he got started. So way late he would come back, we would have order restored and the room cleaned up and everything, and we'd all go to bed.
DOCTOR: Is this one of the bonuses you think about?
PATIENT: I look back on it and I think of the foolish things we did. Some guys came up one night and the room was cold. We wondered who could stand the most cold and naturally each one of us knew we could stand the most cold. So we decided to raise the window. No heat coming up or anything and it was seventeen below zero outside. I remember I had one of those woolen skullcaps on and two pair of pyjamas and a robe and two pair of socks. I guess everybody else did the same thing. But when we awakened in the morning everything, every glass, and everything else in that room was frozen solid. And any wall you touched you were just liable to stick to it, it was just frozen solid.
It took us four days to thaw out that bedroom and warm it up. I mean that's the kind of foolish thing you would do, you know. And sometimes somebody looks at me and sees a smile across my face, and thinks the guy is nuts, he is finally cracking. But it's just some incident that I think about that I get a kick out of. Now yesterday, you asked me what is the main thing that the doctors and nurses could do to help a patient. It depends a lot on the patient. It depends a lot on how sick the patient is. If you are really sick, you don't want to be bothered at all. You would just like to lay there and you don't want anybody fumbling over you or taking your blood pressure or your temperature. I mean, it seems that every time you relax someone has to do something with you. I think the doctors and the nurses should disturb you as little as possible. Because the minute you feel better, you are going to raise your head and be interested in things. And that's the time for them to come in and start gradually cheering you up and coaxing you.
DOCTOR: But Mr. J., when the very sick people are left alone, aren't they more miserable and more scared?
PATIENT: I don't think so. It's not a matter of leaving them alone, I don't mean to isolate these people or anything like that. I mean you are there in the room and you are resting nicely and there's someone plumping your pillows, you don't want your pillows plumped. Your head is resting nicely. They all mean well, so you go along with them. Then someone else comes along and "Do you want a glass of water?" Why, really if you wanted a glass of water you could ask for it, but they will pour you a glass of water. They are doing this out of sheer kindness of heart, trying to make you more comfortable. Whereas under certain conditions if everybody would just ignore you-just for the time being, you feel much better.
DOCTOR: Would you like to be left alone now, too?
PATIENT: Not, not too much, last week I had
DOCTOR: I mean now, now during this interview. Is this making you tired, too?
PATIENT: Oh, I say tired, I mean I've got nothing to do but go down there and rest anyway. But ah, I don't see much point in this thing too much longer because after a while you get repetitious.
DOCTOR: You had some concern about that yesterday.
PATIENT: Yes, well, I had reason to be concerned because a week ago, had you seen me, you would not have even considered me for an interview because I was speaking in half sentences, I was speaking in half thoughts. I would not have known my name. But ah, I've come along way since then.
CHAPLAIN: How do you feel about what has happened in this past week? Is this another stroke of your bonus?
PATIENT: Well, I look forward to having it happen like this, this thing travels in cycles, you know like a big wheel. It goes around and with the new medicine they tried on me, I look for some extenuation of these different feelings. I either expect to feel real well or feel real bad at first. I went through the bad spell and now I will have a good spell and I will feel pretty good because it happens like that. Even if I don't take any kind of medicine, if I just let things go.
DOCTOR: So you are entering your good cycle, now, right?
PATIENT: I think so.
DOCTOR: I think we will take you back to your room now.
PATIENT: Appreciate it.
DOCTOR: Thank you, Mr. J, for coming.
PATIENT: You are quite welcome.
Mr. J., whose twenty years of illness and suffering had mad him somewhat of a philosopher, shows many signs of disguise anger. What he is really saying in this interview is. "I have bees so good, why me?" He describes how tough and strong he wash his younger years, how he endured cold and hardship; how he cared for his children and family, how hard he worked and never allowed the bad guys to tempt him. After all this struggle, his children are grown up and he hoped for a few good years, to travel, to take a vacation, to enjoy the fruits of his labor. He knows on some level that these hopes are in vain. It takes all hip energy now to stay sane, to fight the itching, the discomfort, the pain, which he so adequately describes.
He looks back at this fight, and eliminates step by step considerations which pass his mind. Suicide is "out," an enjoyable retirement is out of the question as well. His field of possibilities shrinks as the illness progresses. His expectations and requirements become smaller and he has finally accepted the fact that he has to live from one remission to the next. When he feels very bad he wants to be left alone to withdraw and attempt to sleep.
When he feels better he will let the people know that he is ready to communicate again and becomes more sociable. "You have got to be lucky" means that he maintains the hope that there will be another remission. He also maintains the hope that some cure may be found, some new drug developed in time to relieve him of the suffering.
He maintained this hope to the very last day.