In the Patient’s Shoes

“I am not supposed to be here,” was my first thought and first feeling after getting into Medical School. During our very first class the professor started questioning us about our reasons for choosing medicine. Why become a doctor? Everyone else seemed to give perfect answers. All I could think about, while hearing each one, was that I did not know what I was going to say when my turn came. Most of my friends said that they had not considered anything else. Children whose parents were both doctors answered that they didn’t know any other lifestyle. This was the answer that began to haunt me. That was the moment when I started to think that I didn’t really belong.

What was the daughter of a maths teacher and an educator doing there? Why had I chosen this profession? When did I make this decision? All I could remember was a six-year-old girl tugging at her mother’s skirt, whispering: “Mom, I want to be a doctor when I grow up, a doctor who delivers babies.” At that time, I did not know the term obstetrician and gynecologist. There was no obvious reason for my choice. There have been no doctors in my family for me to admire. At this age, it would have been more normal if I had said I wanted to become a ballerina, a singer or even a princess. Actually it would have been normal if I wanted to become like my mom and work with kindergarten kids, or like my father and teach maths at college. But for no apparent reason and without any further exploration, I decided I would become a doctor and never questioned myself about it again – that is, until I arrived at medical school. When my turn to answer arrived, I had nothing to say so I told them that my name was Mariana, that I was 21 years old and I did not know why I had chosen medicine. I remained thinking like this for 4 more months, until I met Maria Aparecida.

In the middle of the first semester we visited a Basic Health Family Unit (UBSF in Portuguese). These Units specialize in primary care and are divided into teams with each team being responsible for a neighbourhood. Doctors, nurses, physiotherapists, nutritionists and other health professionals monitor the families with the aim of disease prevention. It is a fantastic idea that has emerged to serve the poor. Brazil is a beautiful country with the possibility of one day becoming a great one but it is poorly managed country and there is widespread corruption, which holds it back from achieving its full potential. Unfortunately, because of this, a great idea remains only a great idea and not an evolving and developing reality.

During our days in this Unit, we were encouraged to observe how the clinic worked. We talked to patients in the waiting room in order to gather epidemiological information about housing conditions, water treatment, sewage services, garbage collection, maintenance, average salaries, numbers of children, education levels and the population’s knowledge about health prevention programs. We were encouraged to listen to patients more than to talk ourselves. To let them talk about their anxieties and complaints about public health in Brazil. Not far from the Health Unit there was a nursing home and sometimes we dropped in to talk to the elderly people that lived there.

This is a multi-residence housing facility with about 26 apartment-style rooms with double bedrooms and 2 people living in each house. There is a common gathering area where they have some small festivities, health education classes, community meetings and suchlike. There is also an arts and crafts room where they learn to embroider, paint or do other activities. It is a nice place, with medical and nursing care. Considering the harsh reality of my country, this house seems to be an excellent place for those abandoned seniors. Without such a place, many of them would be living on the streets or suffering from various forms of abuse, either psychological or physical at the hands of relatives or acquaintances whose only goal would be to take care of the elderly for their retirement salary at the end of the month.

Visiting that place, wearing our white coats for the first time, being received as doctors and being respected was quite an experience. We were able to bring smiles to people’s faces by merely talking to them and this masked our deeper appreciation of their true reality. All we noticed were some happy and amusing senior citizens welcoming us, telling their life stories, and reliving their pasts with us. We were all blinded, both by our new status, and also by the apparent happiness of these people. Looking back I can see that our perception was a drug effect. We were experiencing an emotional high as a result of the excitement of our new position: when we heard some sad stories it seemed OK because it was in the past. If bad things had happened to these people, they referred to it in the past, something that had been overcome or simply forgotten. We returned to class and talked about some of the stories we had heard, moving from one to the next. We had just started to become doctors. We had no idea of what else to do. We had no idea of how to look at that place, what to look for, how to approach the situation, what to pay attention to. We had not yet learned to notice what the patient couldn’t say until that atypical day in June.

We were at the end of the semester and by this time we had lost that spark in our eyes that we had in the first few months. We were becoming tired and had talked to all of the residents. We had listened to some intense stories and thought we were finished with that part of our course. Many students started to skip this class to study for finals. Some went home and registered as though still present but stayed outside the gates of the Unit, tired of listening to the residents’ stories. What we didn’t easily realize was that this was part of our lifelong learning: learning how to listen with respect, dealing with the same stories from different perspectives and with different feelings. We hadn’t realized that you can’t just ‘chuck in the towel’ because you have problems, or because you are tired and exhausted.

But then I met Maria Aparecida. I was in a group of 3 students, and we knocked on the first door we saw. There was an old lady sitting on a rocking chair by the balcony and a younger one doing the dishes in the kitchen by an open window. We said hello to the woman in the chair but she didn’t answer, not even a nod. The other woman hurried to answer us. She told us that she was the cleaning lady and that in the last week the older woman, whose name was Maria Aparecida, wasn’t feeling very good. We asked a bunch of basic questions pertaining to high blood pressure, pain, headaches and prevention programs, because these were the few things we knew we were supposed to ask. The cleaning lady started to explain the woman’s condition but to be honest, I can’t remember what it was exactly. I vaguely remember her explaining to us that the old lady had depression but I did not pay much attention; my attention was fixed on the old lady’s eyes. They did not move, nor did she. Her feet swung the chair, slowly, but nothing else. Frozen arms, frozen head and frozen eyes. Her eyes blinked with no life, almost as if they were only jolted by the movement of the rocking chair. I would have thought she was dead, if it wasn’t for her feet swinging back and forth. I couldn’t hear her breath. At that point I started to stare at her face. A strong feeling came over me that none of the ‘happiness’ we saw every day seemed true. I realized the residents’ problems did not stay ‘in the past’; they did not overcome them, move on or forget them; they buried the problems of the past so that they did not have to continue suffering from their effects. No-one was living there by their own free will. Some did say that they chose to be there, that they wanted to be free or that old people are a burden and they did not want to be a burden to anyone. But who wants to be alone, to feel alone? Most of them did not receive any visits, or calls. Some didn’t get to meet their grandchildren because their children had long ago disappeared. When visiting day came, they get dressed for it, they buy coffee, they make coffee, they expect someone to arrive… but for most of them the ritual is useless, the coffee grows cold, gets old, and is thrown away. After staring at Maria’s face for a while I asked her name. She looked at me, but gave me no answer and went back to stare at the skyline.

At the time of this meeting, my own grandmother was living with me. She used to live in Brasília. She had raised her 9 children on a farm and moved to Brasilia when they grew older so that they could study. My grandfather died, my uncles and aunts grew up and got married, had their own children and my grandma ended up raising most of her 26 grandchildren herself. But the children that used to spend the days at her simple old house have now all grown up as well. They no longer argue over who is going to sleep with grandma at night anymore. She does not punish us because of fighting together or not finishing our homework. We seldom visit her house, she stayed there alone, growing old and slowly losing her ability to do things herself. So we sold her house and she moved in with one of her daughters. The truth is that she lost the one place in the world that she could call home. She now has a room in each one of her children’s homes, but none of them feels like home. She was living with me when I met Maria Aparecida and she was in the worst shape I have ever seen her, lost in a deep depression. Somehow that old lady reminded me of my grandma. She had the same doll eyes my grandma had. Maybe that’s why I couldn’t go away; I couldn’t just stop trying to talk to her as my friends wanted to do. I had to try harder because if it was that bad for my grandmother it was definitely worse for Maria Aparecida. At least my grandma had a bunch of people who would not give up on her, who would not stint on their efforts to support her.

I sat near the rocking chair and started to stare at the same place that Maria was staring. There was nothing but an old gate, a heap of trash and some trees. As I kept on staring at this ‘nothing’ by her side, I started to feel lonely and empty. I realized that she might have been feeling the same way. I felt like I wanted to cry so that I could get away from her. I cried a little bit and I didn’t know why. Was I crying out of pity? Or was it because I was feeling what my grandma was probably feeling too? When I got myself together again I came back and sat next to her. She did not even look in my direction, she kept looking nowhere. The cleaning lady tried to give her some food, but she didn’t eat. She hadn’t eaten anything for the past 2 days. The woman said that the doctors had gone there and talked to her, explained that she needed to eat because, otherwise, she would have to be admitted to hospital, but nothing changed. She only got up from that chair to sleep. Doctors increased doses of her antidepressant, but she refused to eat and was given a hard time to make sure she took her medicine. I realized that most of the doctors and health professionals were worrying about her not eating, or taking her medicines. They listed all her symptoms and focused on trying to treat them. But as I did not know anything about symptoms or medicines at the time, my biggest worry was what was she feeling, what she was staring at and why she wasn’t talking to anyone.

Although this lady reminded me of my grandmother, I noticed that my feeling of upset wasn’t just related to that. I was also afraid of having that kind of life myself. I thought about who I would become if the people I recognized as mother, father, brothers and friends one day disappeared from my life! If I ended up having no one else to love or to be loved by, would I still recognize the world as the one I grew up in? Or would I just stare at it, trying to see myself in it? The world as we know it keeps changing every day. It seems to get more selfish, colder and more private. People become more distant from each other. Bridges fall down and walls go up just like Newton said, but still we get through it all without even realizing it, because our world is built on our relationships with our loved ones and they make life bearable. If the world becomes a place with no one left to hold you, to share a life with, you become a stranger in your own home. I was afraid of this myself, of becoming her. And then I saw that she might be afraid as well.

I asked her name again and she did not answer me. Instead she told me that when she was a girl she used to climb trees to pick fruits and eat them. I looked to the cleaning lady trying to understand that short story and she answered me back: “Never mind honey, she keeps telling stories about trees and fruits and farms”. My first impulse was to explain that she wasn’t supposed to eat fruits straight from the tree and that she had to wash them first, but I knew that my words would have been ignored. So she had opened a door for me and I followed her. I asked her about farms, using the stories I heard my grandmother tell to make conversation with her. I asked about harvesting, planting, horses, cows, making cheese and milking cows, everything my grandma used to do when she lived on the farm. She answered me, and started to talk about it. Apparently she grew up on the farm, she was the youngest of 9 brothers and sisters and she got married very young. She only had 2 sons, both died many years ago. She said she was from Minas Gerais, a state in Brazil, and she had moved to Brasília with her husband and the kids. They sold the farm in 1956 because her husband wanted to go to the place where they would build Brasília, a brand new city and current capital of Brazil. He believed that he would get rich once the city was finished as a bunch of work options would appear. That was a common dream at the time but his big chance never arrived. He worked as a bricklayer until he died of cirrhosis. By the time it happened the kids were not very old, they were 16 and 18 and Maria said she did not want them to work and not be able to study. So she started to sew clothes for money. She baked bread and other things and sold her products at the fairs on Sundays. She said she was doing well, still poor, but had enough. Her sons eventually graduated, becoming teachers. One day they were travelling to Minas Gerais, because she wanted to visit her family, when they crashed and both of her sons were killed. She stayed in the hospital for months and after that she moved in with one of her brothers. After that terrible episode and as time went by she watched each one of her brothers and sisters die of several things such as old age, “chagas” and cancer until she was the only one left. That’s when she came to Goiânia, a city near Brasília, where I live. She came to be with her brother’s daughter and stayed there awhile. She was already an old lady, 87 years old, and being alone can be dangerous. One day she fell in the bathroom, broke her hip and went back to the hospital where she stayed for several months. Because of her fall, her relative decided that she couldn’t stay there anymore. She had to work all day long herself and couldn’t be with Maria Aparecida and couldn’t hire someone to take care of her either. That is how she ended up in a public nursing home. I asked Maria if this woman ever visits her, she said that in the beginning she visited more frequently, now she hardly ever has a chance to drop by.

I noticed that the whole time she was talking to me she did not look me in the eyes, not even once. She kept looking in the same direction. At the end of her story she said that she would like to feel home just for one more time. By this time, I was not looking at her as a story I was supposed to tell the others when we returned to class. I no longer felt objective about this old lady. First, she reminded me of my grandmother. Then, her life story looked a lot like my father’s life. He was also extremely poor and became a respected maths teacher, as did her children. Both my grandmothers did baking and needlework to support their children through school. And then my own reaction: being afraid of having that life and ending up alone one day. Because I became so involved with her story I could see that she was not looking into space. She was looking at a mango tree, just like the ones she talked about on her farm. I didn’t say anything; I took off my coat, went to that tree, climbed it and picked a mango. I brought it to her and told her that she should eat it straight from the tree so that she could realize that this is the same world she once knew. I told her that it might not taste the same, but it’s very similar and she could feel like she was home, even without having the people that used to make her feel at home. She smiled at me and ate the mango, just like I said. I watched her doing it and I could see some kind of happiness in her eyes. I had to say goodbye because it was my time to leave. She hugged me and said goodbye.

A week later I asked a nurse about her, she told me that she doesn’t have any major disease other than depression. She had high blood pressure, but it is under control, she can’t afford a psychiatrist and in the public health sector she could only be seen by a doctor once every 2 or 3 months and normally it is not the same doctor, which hinders continuity of care. The nurse also said that she was doing a lot better though. She was eating again and not refusing her medication. I saw her twice more and on both occasions she talked to me about many things such as how much she missed her family, her house and everything she used to do. I convinced her to start going to dances, craft classes and hiking like the other residents. The last time I saw her I explained that I was going on vacation and that I would not be around as I used to. I should have said that I would never come back, but I couldn’t. I felt sorry because she was talking to me and suddenly I went away. Just like everyone in her life, I would disappear. I know better now that you are not supposed to hide the truth, even if it will hurt you or your patient. She didn’t say anything other than “That’s life honey; people get in and get out of it, don’t they? Everything is going to be all right”.

And so it happened, eventually the end of the semester came and I stopped going there. For some time I kept asking new students that used to go there about her and they always answered me that she was OK. I don’t know how she is now; I hope she is feeling well.

The awardee submitted this article for the Ascona Prize under the title “Sitting across the Doctor’s Table”.