Joel Bruinooge, 26, worked as a writer and editor in the public relations department of a large insurance company and had been married to Meg Crissara, a pianist, for almost three years when he suffered a stroke on Jan. 13, 1977. The stroke resulted from a blockage in one of the vertebral arteries which supplied blood to parts of his brain, and it caused him to have difficulty with speech and balance. It is very unusual for a stroke to affect men as young as Bruinooge. Though his physicians performed a multitude off diagnostic tests, they could find no explanation for why he had had the stroke. He made a gradual recovery and returned to work six weeks aftr his stroke. On April 22, however, he suffered a heart atack caused by a blockage in one of the arteries that supplied his blood to heart. He was hospitalized for another three weeks and returned to work full-time shortly thereafter. This account of his illness and recovery is excerpted from "Patients: The Experience of Illness" by Dr. Mark L. Rosenberg, to be published by the Saunders Press, Philadelphia, and distributed by Holt, Rinehart and Winston. JOEL BRUINOGGE: I felt like I had the flu: I was dizzy, mildly nauseated, really tired, and I just wanted to go to bed. At the hospital it took them a long time to figure out what it was. At first they thouht it was migraine headache. Then they did a brain scan and still didn't know what it was. Then the next day, they did the angiogram and found the clot. I don't even remember the first two or three days. It's like I was asleep the whole time, and anxious. Jan. 25, 1977 Meg CRISSARA (Joel's wife): In the beginning I was really afraid he was going to die. One of the doctors said it's either a migraine headache, an aneurysm or a brain tumor. He said that so matter-of-factly, but it sounded like things were not going to be good at all. I was frightened and I couldn't sleep. After they did the angiogram, Dr. Caplan took me into the solarium and sat me down. He told me it was a vascular occlusion -- and I had to ask him what that meant. So he told me Joel had had a stroke. I couldn't handle it at all, I was petrified and I just cried a lot. He was really kind, and he stayed with me for a long time, maybe 15 minutes, until I was a little better. s Jan. 25, 1977 JOEL BRUINOOGE: Everything is so slow. What should take me a couple off seconds takes an hour. It's hard to do little things like go to the bathroom, or tie my shoe. Now these little things are big things. Jan. 26, 1977 MEG CRISSARA: I remember the first time the physical thrapist came in to try to help him walk. She picked him up but he wasn't doing very well and he couldn't take a step. I started to cry, and left the room so he wouldn't see. May, 7, 1979 JOEL BRUINOOGE: This is not like anything else. I have never been in a place that I couldn't get out of. What scares me the most is the fear of being a cripple. Jan. 26, 1977 JOEL BRUINOOGE: Sometimes I start laughing like an idiot and can't stop. The part of my brain that was affected controlled my supression reactions, so now things I would normally supress automatically come to the surface. I feel like I don't have any control. Feb. 1, 1977 Meg CRISSARA: I've loved you the whole time, but I like you even better now that you're so open about the way you feel. Sometimes, though, when I see a lot of laughing or crying, I wonder whether you're actually feeling all that much. . . or whether your body's taking over. Feb. 1, 1977 JOEL BRUINOOGE: Just today I got to the point where I could tell how well my balance was going. Before, I would be falling and wouldn't know it; I couldn't tell what to do to stop it. It's a little bit frightening. Feb. 1, 1977 Meg CRISSARA (after Joel's return home): One of the basic areas where we communicated without having to talk was sex. It was always very nice and I never had to be the one that said, "Well, why don't we?" Now, we don't share that area of communication as often or as comfortably as beffore because it's a little bit awkward for him. He gets tired much faster. I don't walk around thinking about that but it's an outlet we just don't have now. Joel had always been very supporative of me and, in a sense, our relationship centered around his doing as much as he could so I could practice the piano six hours a day and perform. When Joel was hospitalized, the rest of my life basically stopped. All the stuff that we shared before is now my responsibility. Being emotionally strong and not falling apart is also my responsibility. If I'm home and I cry Joel asks me not to because it gets him upset. So I either have to go out to the sidewalk and cry, wait until he is out or not cry at all. Joel used to ask, "What kind of a day did you have, what happened to you today?" He still does ask, but now he does it for form's sake -- he's so busy getting better and the daily pressures on him are so incredible, that he can't really deal with my day. I never had to give like this before. In the beginning I felt really great, my insides really wanted to give and when I found an outlet for it it really felt good. But now this has been going on long enough. It gets to be a strain. April 7, 1977 JOEL BRUINOOGE: I could tell you that it's very frustrating to try to learn how to tie your shoes for the first time, or it's very frustrating to have your attention span be only five minutes, but I don't think you would appreciate that unless you had gone through it, or you had seen someone you knew well have to struggle with it. Jan. 1, 1979 MEG CRISSARA: Those of our friends who have been through either a death or serious sickness in their family are immediately much more sensitive to our situation. They understand many things that our other friends just don't. Some people think it's not so hard because the changes in Joel are not so dramatic. Actually this is much harder than if Joel had had surgery or had been very sick and then gotten much better. This is harder -- it takes more patience. Even when people who are close to us call up wanting to see how we are, they will never refer to what actually happened to Joel nor ask him how he really is. They always say, "Gee, you look fine, ya know. Everything's gonna be all right." They're embarrassed, but they keep it all underneath: they know something's funny, but nobody will say anything about it. March 6, 1977 JOE BRUINOOGE: The neurological damage makes me look like I'm drunk, and every time I have to move I can see people say, "Hey, what's with him?" It also means an incredible amount of work to stand up on the subway all the way to downtown. I tried carrying a cane so people would give me a seat. I ended up standing, holding the cane. MEG CRISSARA: Since Joel talks a little slower and not quite as loudly as he used to, everybody talks more slowly and louder to him. His slow speech makes it sound like his mind isn't working either. People can't separate what comes out of his mouth from what's going on in his head. It's like seeing a blind person and assuming he is deaf as well as blind. JOEL BRUINOOGE: It's like I'm some kind of dummy. March 6, 1977 JOEL BRUINOOGE: I'm kind of stuck where I am. I will probably spend the rest of my working life with the same employer because, obviously, another company is not going to want to assume my medical risk -- it's just easier to get somebody who doesn't have these problems. Freelance writing is out now, because I need the medical benefits I get with my job and I can't buy them on the open market. MEG CRISSARA: When Joel went back to work a week ago, they gave him a physical exam. They asked him to count backwards from 100 by threes and he started to do it faster than the nurse could figure out if he was correct or not. I think it was like being insulted to be asked these things. Joel also had to get completely undressed, then dressed again, within less than an hour and a half -- a big, huge effort. That physical exam was so painful that Joel cried the whole afternoon and evening -- it took a full day before he could even say what was bothering him. JOEL BRUINOOGE: It made me feel like a turkey because they wanted to see if could think or not. Sept. 11, 1977 MEG CRISSARA: I don't think anybody should have told us any more or any less than they did, but at that time is was very frustrating. My greatest concern was how much is Joel going to recover and they would say, "He's doing very well," or "We think there's going to be a lot of recovery," and I'd say, "How much recovery?" At one point they said, "Well, we're going to expect at least 80 percent." But 80 percent doesn't mean anything if you don't know what the other 20 percent is going to be. Those numbers are really a trap. April 7, 1977 JOEL BRUINOOGE: On April 21, about 10 o'clock, I just had a little bit of chest pain. I had had pain like that before but the doctor had thought it was caused just by anxiety. I thought I'd go to sleep and it would go away. It was still there in the morning when I woke up, so I got dressed and took the subway to work. It hurt pretty bad and I started to perspire on the subway. It started to hurt worse at work so I went to the clinic and they sent me here. When I got here they gave me morphine and said I was having a heart attack. May 10, 1977 JOEL BRUINOOGE: I remember lying in the hospital bed after the heart attack thinking that my problems now had become very finite: whether I could move my left hand or whether I could pick up that nickel. It was a relief. I had the very strong feeling that the lifestyle I had been living was wrong for me -- for example, instead of doing what I wanted to do I would end up carting Meg around so she could do what she wanted to do: play a concert or practice. The stroke and the heart attack gave me a chance to say, "I quit." They were a way out. May 7, 1979 Meg crissara: We were very normal, but what that experience does to normal people is profound, and confusing, and very, very frightening. There was Joel, this sick person, in a place that is technologically as sophisticated as anywhere in the world, and in all the time he was there no one came by to see if he was depressed or wanting to talk to someone about how he felt. I wasn't even told you could ask to have somebody come by. Maybe our appearance of being strong hid the fact that we needed help. May 9, 1979 JOEL BRUINOOGE: Meg said she wanted to separate the day I came home from the hospital after the heart attack. I think even before I had had the stroke there were tensions in the marriage. I was more pragmatic than she was -- because I had to be. I felt I had assumed more than my share of housekeeping and domestic responsibilities. I took care of everything and she concentrated her total awareness on playing the piano. She was not interested in my job -- she wanted me to quit and write a novel -- and I wanted her to pursue a career with financial rewards. . My illness brought these differences to a head. It threw the total load of daily chores -- from buying food to making out the income tax -- on her. It forced a complete change in her life's priorities, and she was afraid it would limit what she was going to do with her piano. It was life-threatening in a sense: It threatened our hopes of what our lives were going to be. Meg left about two weeks after I came home from the hospital. She felt that the stroke and the heart attack were harder on her than on me. At first I was pretty angry. I felt betrayed. Then the anger was replaced by a sense of loneliness. I haven't told people at work because I don't want to demonstrate any sign of instability. My doctors haven't asked about it. They say, "Give my regards to Meg," and I just go, "Sure," because I don't want the hassle of having to explain. Sept. 11, 1977 JOEL BRUINOOGE: After the heart attack, the cardiologist told Meg I could probably never be a father because the strain of staying up all night or playing with kids would be too much. He wouldn't talk to me about it because he felt it would be unwise to subject a patient to the stress that kind of discussion would generate. But the real stress for me was living in dread that something else was going to happen. I don't know any better now whether I'll have another heart attack or stroke, but I can't go through my life waiting for it to happen. Sept. 11, 1977. MEG CRISSARA: After Joel began to recover, his feeling was, "Oh, I can live, I can, oh, wow, how great! I can go back to work! Look at this, I can get dressed!" My feeling was, "Please, I need to rest." We were both pushed to the brink and made to question what it means to be living. But after stepping away from that, the quality of day-to-day life just changes; it's just much, much fuller. Still if someone had suggested to me while I was going through it, that it was going to be a positive experience, I probably would have told them to shut the hell up. I didn't want to hear it. If I was around somebody going through the same thing now, I would probably be real quiet, and try to just be there, just listen, and take the person out for dinner. Get them out of the hospital for a little while, take them for a walk. That help is even more necessary after the tension and trauma are over, once the person is back home. May 9, 1979 JOEL BRUINOOGE: In some ways I consider myself very lucky for having had the experience. It's allowed me a chance to sit back and look at my life. I'm happier with the way I live now than I was before I had the stroke. After I had the stroke I decided that I didn't want to expend energy on playing games with people, telling them what they want to hear. It's just being more honest with myself -- it's being more honest with other people. Work is less stressful because I can look at situations that would have produced stress for me before and say, "That's not a problem -- I have had problems." May 7, 1979