Tuesday, May 12, 2009

"Can I . . . get married?"

The examination and treatment of patients is not the only role of a university hospital. It also has to
carry out research and educate medical students, teaching them how to become good doctors. After studying
about diseases in a general way, the students are divided into small groups of six or seven. They make a
round of visits to a different department every one or two weeks to examine the patients. They read the
relevant textbooks and receive guidance from the doctor in charge of the patients. This is the curriculum
called 'porikuri' (polyclinic). Two groups often have to remain in the hospital at night, and sometimes
even sleep over in the special 'porikuri' rooms: the students of the surgery-oriented departments, who
have to observe operations, and those of the obstetrics department, who also have to attend the birth of
babies.
I feel sorry for the patients who cooperate in this curriculum, but I always ask them because I think it
is an important way to foster good doctors. The patients all kindly agree. When the visits are repeated,
patients get used to them. They even acquire better knowledge by glancing at the textbooks carried by the
students and listening to what the doctor explains to them. Reversing roles, the patients sometimes even
teach things to the students in the next group that comes around - which is no laughing matter.
Aya was in the same age group as the students. I was a little concerned about her state of mind, but I
wanted the students to get some understanding of her disease. I made up my mind to ask for her cooperation.
She nodded with a wet little smile.
Three students, two young men and a young woman, were responsible for Aya. They carefully examined her
and studied hard about her disease. Though their visits finished after one week, one of the men sometimes
went to see Aya in the evening while he was studying in a different department. He was blessed with good
health and came from the kind of family in which it was only natural to study medicine. I could imagine
he was shocked to learn about Aya's circumstances: entering a high school aiming at university study, and
then having to move to a school for the handicapped because of her disease. And he knew that the disease
was 'slow but progressive.' I was pleased to hear that he found time to visit Aya not just because of his
interest in the disease but because of his kindness. It suggested to me he would make a good doctor.
One day, I was walking along the corridor after finishing my round of ward visits. Aya suddenly came out
of her ward in her wheelchair, just as if she had been waiting for me. She stopped beside a fire hydrant
on the dimly-lit wall and asked me a question out of the blue:
"Dr. Yamamoto, can I . . . get married?"
I automatically answered, "No, Little Aya, you can't."
Then I thought for a moment. Why had she asked that question? Maybe there was someone she liked . . .
could it be that medical student who had been visiting her? Thinking I should listen to her carefully,
I crouched down and looked into her face as she sat there in her wheelchair. I was shocked to see the
look of surprise in her eyes. She had clearly been startled by my firm reply.
Aya was in a state where she had to struggle even over small things, and she knew that her disease was
gradually getting worse. I had assumed that she would never even think about marriage in general, let
alone think about whether she could get married or not.
Now I realized, however, that reality was different: she had become taller, her breasts had developed,
and she was having her period regularly. It always bothered her because it made her sway more. I'd
watched Aya grow from a young girl into a woman. So why did I assume that she would never think about
getting married and having a family? I felt ashamed of myself. I had decided on that dogmatically. Even
though we had been deeply associated with each other for so long, I hadn't fully understood her.
That made me reflect on my conduct. It was the biggest shock that I had ever had from one of my patients.
I will never forget Aya's large, shivering eyes and surprised expression at that moment.
I suppose my answer had caught her off her guard.
"Why can't I?" she asked. "Is it because my children would have the same disease?"
"Well, you need someone to get married to," I answered as cheerfully as possible. "First of all, you'll
have to find someone who fully understands your condition and will agree to marry you. Do you have anyone
in mind?"
It was a very cruel answer. But I didn't want to give her a vague reply that would encourage her to
cherish an illusion that would soon be dashed.
I was moved to tears as she shook her head and said, "No."
I don't know which came first - her face becoming hazy because of my tears or her eyes filling with tears.
For a while, I couldn't move.
For several days after this incident, I could still hear her voice asking, "Dr. Yamamoto, can I . . . get
married?"
The student who had visited her from time to time gradually stopped going to see her. I suppose he got
too busy. Perhaps partly because of that, Aya committed herself to rehabilitation as if nothing in
particular had happened. And she seemed cheerful in her ward.
Around the end of her stay in the hospital, Aya began to suffer from orthostatic hypotension. She would
get a headache and feel nausea whenever she got up. Then one of the patients in the same room died
suddenly. That made Aya's anxiety about dying stronger. She spent several days looking very depressed.
Again I explained to her what would happen to her as the disease progressed, but I said it was a long
time before she would have to face death herself. She nodded. Little by little, she became cheerful
again.
However, she started needing other people to look after her. She moved to a hospital that permitted a
caregiver to stay with her. I sometimes go there to see patients in my special field. Later she moved
to a hospital closer to her home in Toyohashi.
Although I haven't seen her mother for more than two years, she keeps me updated on Aya's condition. She
consults me and a young doctor from my university who has been sent to the hospital where Aya is staying
now. So I have a good grasp of how she is doing. I hear she is loved by everyone wherever she goes, and
her caregiver looks after her with warmth and compassion.
Whenever my patients with this disease start getting discouraged, I encourage them by talking about Aya.
Recently, I've been thinking that in fact I am the one who has been encouraged by her most of all.

Hiroko Yamamoto
Assistant Professot,
(Now Professor)
Department of Neurology,
Fujita Health University Hospital

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