Post by erzulie on Apr 9, 2007 16:29:13 GMT -5
I wanted to share this, partly because we all understand what it's like to have doctors objectify us or not listen to us, but also because it helps put things in perspective I think.
I have this book I cherish, I first read it at the age of 10 but but read it again recently. It's called Alex: The Life of a Child by Frank Deford. The man who wrote it basically just summarized his daughter's life, which only lasted 8 years because she has cystic fibrosis. I found the book touching on a lot of levels. In a way I understood Alex's struggles with her disease because I also have a chronic disease (which is often progressive, like cystic fibrosis) and I have some of the same frustrations. But at the same time, it made me feel so grateful that all I have is endometriosis. It's a terrible disease yes, but it's NOTHING like what this little girl had to deal with. I think i can deal with whatever this disease throws at me, and not complain too much, because I know how much worse things could have been!
Anyway, here is Chapter 20 of the book (it's short):
Unfortunately, the worst two episodes that Alex experienced with young doctors both came in the fall of 1979 [erzulie's note: this would have been around the time Alex turned 8], when she was so sick that any sort of adversary treatment was simply cruel. The first took place one afternoon in October shortly after her lung collapsed when Tina Crawford happened to be visiting Alex. A particularly officious young doctor brought a bunch of students over to examine Alex. He pointed to the tube in her chest, explaining that the incision of an inch or so had been made while she was under a local anesthetic, and then he declared, "This procedure is not very painful to the patient." Immediately, he proceeded with his lecture.
All the years of hearing these c-o-c-k-y [sorry filter problem] young experts talking at her as if she were a body on display, as if a child--a sick child--could not be a real person, welled up in Alex. "Wait!" she suddenly cried out.
But the doctor ignored her and kept right on with his spiel. "No, wait you," she said again, louder still, and tugging at his sleeve this time, too.
He stopped. He had to. Alex had made him stop. And, only then, with a condescending look of annoyance, he turned down to her. "Yes, what is it, dear?"
"How do you know?" Alex asked.
"What, dear?"
"How...do...you...know?"
"I'm sorry, but--"
"Have you ever had a big tube stuck in you and then taken out again?"
"Well, no, I, I--"
"Then don't tell me--or them--it doesn't hurt. Because I don't like being lied to."
Tina says some of the students snickered at the doctor, but he only mumbled an apology, laughed it off, and hurried out to find a more pliant child.
A much worse episode occurred the next month, the day after Thanksgiving. Alex had been back in the hospital for a couple of weeks and was anxiously looking forward to being released. But that morning her lung collapsed again--only nobody in authority would believe her. Nobody would listen to her. She was only a patient; only a child, dying.
Alex herself knew immediately that her lung had collapsed. After all, the memory of her previous collapse was near enough—only six weeks past. But the young resident on the floor seemed threatened that an eight-year-old could be usurping his diagnostic responsibility. He told Alex she was wrong, her lung had not collapsed. Not only that, he refused to give her X-rays. Fortunately, Carol [Alex’s mother], accompanied by her mother, arrived that morning for a visit. They listened to Alex and urged the doctor to at least call in Dr. Dolan [Alex’s usual doctor who specialized in cystic fibrosis]. He lied to them and told them he had already notified Dr. Dolan, and he would be along in time. No layperson was going to tell him a thing.
The greatest irony was that when Alex had been released from the hospital the time before, Tom Dolan had carefully explained to Carol what the symptoms of a lung collapse were, so that, if Alex ever did have another, Carol would understand the problem and rush Alex to the hospital. That way she could, as much as possible, avoid great pain. And here Alex was actually in the hospital, in her hospital, describing exactly the symptoms Tom Dolan had explained to Carol, and still the know-it-all resident wouldn’t listen to Alex and wouldn’t listen to Carol.
It devastated Alex. She was so upset that later that afternoon--still before the resident would let her go for X-rays--Alex called in Claudia Cameron, who helped run the play program in the ward, and dictated her account of the episode. Alex knew that what was happening was wrong, and she d**n well wanted it on the record. Claudia took down what Alex told her:
"I started coughing really, really hard. Then it felt really hard to breathe. I started to cry. Wanda came in and I said, 'I think I have a collapsed lung.'
"Then I got up to go to the bathroom and I started to scream. Barbara came. 'My side hurts,' I said. I put on nasal prongs to give me oxygen and it made me feel a little better. The Barbara said, 'What would you like best, besides your parents?' I said, 'I would like a nurse by me.' Maribeth stayed with me while Barbara checked IVs. It felt comfortable that the nurses were with me. Sue, Wanda, and Maribeth all took turns watching me. I fell asleep. In between my sleep I would cough.
"After a while my mother and Nana were here, and I started to cry because I was so happy they had come. I took another rest but I coughed some more. My mom started crying because she was unhappy for me."
That is how a child feels when she is sick and hurting and they don't trust her.
Finally, the obvious could no longer be contradicted, and the resident agreed to let Alex go for X-rays. They revealed exactly what Alex had told everybody six hours before, that her lung had collapsed.
We were infuriated--all the more because Alex had suffered so needlessly, but the incident did recede rather quickly from her consciousness for the simple reason that the new collapse meant she would have to stay in the hospital longer. Soon, that meant much more to Alex that the suffering and indignity she had been forced to endure on that one day, November 23. She was beginning to think more and more about her death.
I sat down and wrote a long letter to the head of the department of pediatrics and to the chief of staff of the hospital. I began: "I don't want anybody's hide. I don't want anybody to eat crow." The damage was done to Alex, and to drag it out, to carry a grudge, would only create an atmosphere that, I was sure, would make it more uncomfortable for her in the hospital. But: attention must be paid. At least if I made known what had happened, then maybe it would be less likely to happen again. Maybe the next young man who wants to be a doctor will listen to a child.
I have this book I cherish, I first read it at the age of 10 but but read it again recently. It's called Alex: The Life of a Child by Frank Deford. The man who wrote it basically just summarized his daughter's life, which only lasted 8 years because she has cystic fibrosis. I found the book touching on a lot of levels. In a way I understood Alex's struggles with her disease because I also have a chronic disease (which is often progressive, like cystic fibrosis) and I have some of the same frustrations. But at the same time, it made me feel so grateful that all I have is endometriosis. It's a terrible disease yes, but it's NOTHING like what this little girl had to deal with. I think i can deal with whatever this disease throws at me, and not complain too much, because I know how much worse things could have been!
Anyway, here is Chapter 20 of the book (it's short):
Unfortunately, the worst two episodes that Alex experienced with young doctors both came in the fall of 1979 [erzulie's note: this would have been around the time Alex turned 8], when she was so sick that any sort of adversary treatment was simply cruel. The first took place one afternoon in October shortly after her lung collapsed when Tina Crawford happened to be visiting Alex. A particularly officious young doctor brought a bunch of students over to examine Alex. He pointed to the tube in her chest, explaining that the incision of an inch or so had been made while she was under a local anesthetic, and then he declared, "This procedure is not very painful to the patient." Immediately, he proceeded with his lecture.
All the years of hearing these c-o-c-k-y [sorry filter problem] young experts talking at her as if she were a body on display, as if a child--a sick child--could not be a real person, welled up in Alex. "Wait!" she suddenly cried out.
But the doctor ignored her and kept right on with his spiel. "No, wait you," she said again, louder still, and tugging at his sleeve this time, too.
He stopped. He had to. Alex had made him stop. And, only then, with a condescending look of annoyance, he turned down to her. "Yes, what is it, dear?"
"How do you know?" Alex asked.
"What, dear?"
"How...do...you...know?"
"I'm sorry, but--"
"Have you ever had a big tube stuck in you and then taken out again?"
"Well, no, I, I--"
"Then don't tell me--or them--it doesn't hurt. Because I don't like being lied to."
Tina says some of the students snickered at the doctor, but he only mumbled an apology, laughed it off, and hurried out to find a more pliant child.
A much worse episode occurred the next month, the day after Thanksgiving. Alex had been back in the hospital for a couple of weeks and was anxiously looking forward to being released. But that morning her lung collapsed again--only nobody in authority would believe her. Nobody would listen to her. She was only a patient; only a child, dying.
Alex herself knew immediately that her lung had collapsed. After all, the memory of her previous collapse was near enough—only six weeks past. But the young resident on the floor seemed threatened that an eight-year-old could be usurping his diagnostic responsibility. He told Alex she was wrong, her lung had not collapsed. Not only that, he refused to give her X-rays. Fortunately, Carol [Alex’s mother], accompanied by her mother, arrived that morning for a visit. They listened to Alex and urged the doctor to at least call in Dr. Dolan [Alex’s usual doctor who specialized in cystic fibrosis]. He lied to them and told them he had already notified Dr. Dolan, and he would be along in time. No layperson was going to tell him a thing.
The greatest irony was that when Alex had been released from the hospital the time before, Tom Dolan had carefully explained to Carol what the symptoms of a lung collapse were, so that, if Alex ever did have another, Carol would understand the problem and rush Alex to the hospital. That way she could, as much as possible, avoid great pain. And here Alex was actually in the hospital, in her hospital, describing exactly the symptoms Tom Dolan had explained to Carol, and still the know-it-all resident wouldn’t listen to Alex and wouldn’t listen to Carol.
It devastated Alex. She was so upset that later that afternoon--still before the resident would let her go for X-rays--Alex called in Claudia Cameron, who helped run the play program in the ward, and dictated her account of the episode. Alex knew that what was happening was wrong, and she d**n well wanted it on the record. Claudia took down what Alex told her:
"I started coughing really, really hard. Then it felt really hard to breathe. I started to cry. Wanda came in and I said, 'I think I have a collapsed lung.'
"Then I got up to go to the bathroom and I started to scream. Barbara came. 'My side hurts,' I said. I put on nasal prongs to give me oxygen and it made me feel a little better. The Barbara said, 'What would you like best, besides your parents?' I said, 'I would like a nurse by me.' Maribeth stayed with me while Barbara checked IVs. It felt comfortable that the nurses were with me. Sue, Wanda, and Maribeth all took turns watching me. I fell asleep. In between my sleep I would cough.
"After a while my mother and Nana were here, and I started to cry because I was so happy they had come. I took another rest but I coughed some more. My mom started crying because she was unhappy for me."
That is how a child feels when she is sick and hurting and they don't trust her.
Finally, the obvious could no longer be contradicted, and the resident agreed to let Alex go for X-rays. They revealed exactly what Alex had told everybody six hours before, that her lung had collapsed.
We were infuriated--all the more because Alex had suffered so needlessly, but the incident did recede rather quickly from her consciousness for the simple reason that the new collapse meant she would have to stay in the hospital longer. Soon, that meant much more to Alex that the suffering and indignity she had been forced to endure on that one day, November 23. She was beginning to think more and more about her death.
I sat down and wrote a long letter to the head of the department of pediatrics and to the chief of staff of the hospital. I began: "I don't want anybody's hide. I don't want anybody to eat crow." The damage was done to Alex, and to drag it out, to carry a grudge, would only create an atmosphere that, I was sure, would make it more uncomfortable for her in the hospital. But: attention must be paid. At least if I made known what had happened, then maybe it would be less likely to happen again. Maybe the next young man who wants to be a doctor will listen to a child.