Lisa Blumberg is a corporate lawyer and freelance writer.
Playing Cards at Boston Children's Hospital
by Lisa Blumberg
I came so close to being one of the few people born with a significant physical disability to survive childhood intact. So breathtakingly close.
If only he had left three month earlier. If only we had better understood the system. If only my mother had not been ill. If only I had stood my ground.
For a long time afterwards, I accepted the view that it failed because I had not wanted it. That gave me some control over the situation.
I wanted to believe I was the only one who had behaved badly. Gradually, though, I recognized what a rough and awful game we had been involved in.
In 1968, during the spring of the assassinations, my family was getting ready to move from New Jersey to the Boston area. I was sixteen and still going once a week to "the center" for therapy. I was getting bored with it but it wasn't too bad. I had learned to climb a ladder in PT and how to button my cuffs with a button hook in OT. The speech therapist, well, she was something else.
The center's medical director was Sidney Keats, an orthopedist. He was a somewhat remote and enigmatic figure in an organization that was otherwise managed by middle-aged women. I liked him.
My mother wanted me to continue therapy in Boston and so, since I had cerebral palsy, the center wrote to UCP there for advice. The reply they received created quite a stir.
The letter opened with some unsolicited information about schools. I could go to the Boston Industrial School for Crippled Children, unless I was "mentally impaired"--in which case, there were various programs.
"Ha, ha," everyone laughed. Didn't UCP make a gaffe! I had always gone to regular school and was on the college track.
The letter said that I could get therapy at Boston Children's Hospital. Everyone thought this a fine idea. The hospital, known all over just as Children's, was affiliated with Harvard. It was world class. It occurred to no one that UCP's advice on therapy might be on a par with its educational advice.
So the deck was shuffled before we left New Jersey.
For a while after we moved, my mother seemed to forget about Children's. I was glad. I certainly didn't want to see anyone at a kids' place.
However, in April 1970, just before Nixon invaded Cambodia, she made an appointment for me. She thought I needed occupational therapy so that I could manage better when I was on my own in college the next fall. We were going to see the "top orthopedic CP man" there and he would authorize it.
Call the top CP man by a diminutive of his cumbersome name. Call him Pan. He was small and wiry, in his thirties. After introducing himself to us, he mentioned he had 2,000 patients like me, from babies to teenagers. He asked my mother about my birth.
She said it had been a quick labor, the doctor had been a little late. "Did you do anything to the doctor?" Pan broke in. We should have left then and there.
She looked startled and said, "No, I went back to him for my next child."
She told Pan she wanted me to have occupational therapy. He looked like he didn't know what that was; perhaps he didn't. He told me to walk.
I walked my walk, arms flying, knocked kneed, right leg turned in, about half the speed of an ordinary person. He then gave me a cursory examination and at the end he said, "I see you've been able to do some things with her. Good for you.
"Now, we have to think of her future. Her adductors are tight. They are going to get tighter and tighter and by the time she's 60 or 70, her hips will dislocate. She should have an adductor myotomy. I cut the . . ."
"No!" My self preservation instinct was kicking in.
He said, "You don't say 'no.' You say, 'Dr. Pan, I disagree.'"
My mother said we already had plans for the summer.
Pan said he could wait a year and that meanwhile I should use crutches. That would slow me down and force me to focus on each step.
My mother didn't think that was very practical since I walked without aids. Why tie up my hands if it wasn't needed? Pan just shrugged and said he would authorize physical therapy. Then, after commanding my mother to bring me back in three months, he sent me off for hip x-rays.
The PT authorization slip said I had "mixed CP." Dr. Keats had said I had athetoid CP, which is characterized by involuntary movement. I thought it probably didn't make a difference (and it doesn't, except at card games played at mad tea parties). All I knew was that Pan was a jerk.
When my mother told Matty, my new physical therapist, that I was going to go to Wellesley College, Matty looked at her as if she had said our sheltie plays solitaire.
Physical therapy at Children's was different than at the Center. The physical therapists all seemed very young and the PT room had much less equipment. We did stretching, but no real-world stuff. 0nce Matty watched me walk and said, "You don't concentrate. You just go--like you think you walk normally or something."
I tried to explain it to my mother: "They exalt form over substance." I didn't have the right words. My mother reminded me of how many stories we had heard of people who had been helped by Children's. She did concede, though, that it was odd that Children's didn't offer either speech or occupational therapy.
Pan had me come back every three months. I don't know why we did it. He used the visits simply to make a bid for surgery. He said that cutting my adductors was the minimum he could do. Otherwise, my hips would dislocate when I was 30 or 40. The surgery would give me a more normal walk, a better appearance. My mother said appearance was secondary. He said it was for my future. He said he could not do anything about my coordination, but he could and should deal with my tight adductors.
Sometimes he turned to me. He said, "if you were eight, I would say you need the surgery and then I'd do it," casually dismissing any role for my parents. "But with you, lady, I have to get you to buy in."
My mother said sharply, "Would she have problems with the surgery?" Pan said, "She will have more problems if she doesn't." I think that was a "yes."
I asked, "Would I walk slower?"
He said, "I think you would be glad if your legs were corrected." I think that was a "yes"as well.
He said most of the kids he treated had no future (I bet they didn't), but I might be different. I should have some "guts" and let him save me. How would I like if my hips dislocated when I was just 28? (The years were melting away fast).
I said to my mother that Pan had a weird way of talking. She said that when doctors were at the top of their game they tended to be abrasive.
I didn't give Pan much thought, actually. I was now at Wellesley, getting used to my courses and dorm life. I enjoyed walking around the campus, especially in the early morning. Because of what happened, that is what I remember most about freshman year.
In early 1971, my mother had a mysterious operation. My brothers and I didn't know what it was. Only my father and the doctors knew. There was now a wild card in the deck.
A month later when I thought my mother was all better, I said something about what I would do the next summer. She said Pan had convinced her that I needed surgery. It was for my future.
I felt as if I had been kicked in the stomach.
Since I was upset, we decided to get a second opinion from Dr. Keats back in New Jersey. Dr. Keats had aged some since we had last seen him. He was a little rambling, talked some about a scholarship he had set up for students with disabilities. However, eventually, he focused on me.
He held the X-rays we had brought up to the light of the window and said "these look good." He asked me if I ever had any pain. I said no. "Good, that's the main thing," he said. "How's your endurance?"
I told him and he seemed pleased. He said that conceivably my hips could dislocate when I was elderly, but it was silly to worry about it now. He said muscle surgery was not a good idea for people with athetosis; they had learned that back in 1940s. Cutting my adductors would destabilize me. I needed to walk with a certain amount of internal rotation of my legs in order to keep my balance, he said. My muscles were not too tight but I tightened when I walked. That was just the way it was. His view was that function was what counted.
Dr. Keats had two suggestions: sturdier shoes and more swimming. The stronger my legs were, the better. He repeated again that an adductor myotomy would destablize me, would weaken my legs. He would send Pan his opinion. He wished me all the best.
He walked out with us and then he made his one and only mistake. He said that there was a doctor Green at Children's that we might want to talk to. He was older than Pan, might have a broader perspective.
I was elated that I should just swim more, but my mother had just zeroed in on two things: Dr. Keats seemed to be declining and we needed Green's opinion.
My mother politely asked Pan if he would mind if we consulted Green. He said he'd be delighted.
Green kept us waiting two hours. He finally looked at me and said without much explanation that if I were his daughter, he would agree to surgery. My mother said that I had to agree to it. Dismissing that idea, Green said, "I'm just telling you that if she were my daughter, I'd go ahead with it."
My mother asked whether people with athetosis needed to have some internal rotation. Green said that I could "probably" learn a new pattern. I think that was an "I don't know."
The next time I saw Pan, he said he was "happy" that two other doctors had agreed that my hips might eventually dislocate. Of course, he was being disingenuous, since Dr. Keats had strongly advised against surgery. Then Pan lowered the stakes, sweetened the pot. He said he would only do the right leg, the leg that turned in. Now I had to compromise, he said. If I didn't, he'd be "damn curious" why not.
My father weighed in. He felt that if Pan and Green were two of the best doctors and they said do it, we should do it.
However, my parents did touch base with our family doctor, Dr. Auburn, whose wife worked at Children's. Auburn's concern was supposed to be with my health, not with my walk, so he could have urged caution. Also, he knew the wild card. He could have urged that we focus our attention on our family's real medical crisis, rather than the one made up by Pan.
What Auburn said was, "any advice you get there is bound to be good."
With Auburn's exhortation to have complete faith in Children's, my parents set a surgery date. All that remained was for me to give tacit consent. I kept saying "no." The surgery seemed illogical. It seemed horrible.
Someone tipped me off much later that what I should have said was "interesting idea, let's just wait another year and see what happens." That approach would have avoided a direct challenge to judgment of the good doctors and might have seemed more reasonable to my parents. However I did not realize that this was a situation where strategy was called for.
I did point out to my mother that what with all the walking at Wellesley, I was moving better than I ever had in my life. She wholeheartedly agreed but said that wasn't the issue. By that time it was not clear what the issue was.
Finally, I said yes.
The day before surgery started with a muscle evaluation. Recording her findings, Matty said, "Maybe I should mark you worse than you are, so that afterwards, they'll think you got better." Of course I should have left then and there.
Next, I had an inept exam with a tired little resident. It was part of his education.
Pan came to give me last-minute information. I asked him how long the surgery would take. I expected him to say, "20 minutes," since I had been repeatedly told that this was very minor surgery which "scads" of people had. Just one small snip.
He said, "three or four hours"--and that I'd be on an IV for two days.
He then said he had decided to cut only one of the two of adductor muscles in the leg. This was because everything was complicated by the fact that I was an "athetoid" as well as a "spastic." "If you were all spastic, we could do more, " he said. "Bad girl!" Of course I should have left then and there.
That night I charged up and down the hospital hall as fast as I could, as long as I could. I was saying good-bye to my natural walk.
Wednesday, June 9, 1971, Pan cut me.
What did this fine example of orthopedic manhood say to me the next day, as I lay in pain, encased in hip casts? "You look crucified." He sort of giggled.
I was supposed to start post-op physical therapy on Saturday but the PT department had a reduced staff on Saturdays so that would have been a pain for them. Besides, Pan would have had to come in to split the casts so they could be taken off for exercises. Pan graciously decided I could wait two more days.
By Monday, after five days without movement, both my legs were sticks. I screamed when Matty touched them. She sat me up. I fell over. "You make me sick," I said to Pan later. That was obviously an understatement.
He flared up. "You think I don't know what I'm doing. I do! I've done this surgery 752 times. It's not fancy, not like tendon transplants, although I do those too." I thought it was strange--and I still do--that he could quote me an exact figure.
Matty said I was being terrible to Dr. Pan. She said he knew I didn't like him.
Nine days after surgery, I went home and that was when the fun really began. There was a problem with pain management. The problem was that Pan was not interested. He said his concern was with correcting my leg, not with how I felt while he was doing it. Both my legs now hurt everywhere, but he had only cut one muscle on one leg, so I could not blame all this on him, no indeed. Anyway, I was just faking.
Finally, he prescribed Valium. Valium is not a painkiller. We should have asked trusted family physician Auburn for something. However by that time Pan was the only doctor in the world.
Shortly after Nixon went to China, the only doctor in the world went on vacation. In 1971, Greece was under a military dictatorship. No reasonable person was going there, bringing money into the country. Pan went to Greece.
Throughout July and August, while the pain turned into aches, I had therapy. My hamstrings and some of my hip muscles were doing weird things. I couldn't straighten out my legs the way I used to. My left leg--the leg that was supposed to be untouched--was turning in.
At first Matty pretended things had been this way all along but then finally said, "When you cut a muscle, every other muscle reacts. When you do something to one leg, the other changes."
No one had told me. I had not been playing with a full deck.
"Why did he do it?" I screamed.
"If you don't take risks, you don't do anything," Matty said crossly. "It's not like you had a great walk to begin with."
So it was spoken, so it was said. I had a disability to begin with. It was all right for other people to take risks with me.
"Dr. Pan can always operate again," she added.
My mother, while irked at me for being uncooperative, was slowly changing her view of Children's. She was amazed that Pan would just leave when I could barely stand. (She didn't seem to realize he had probably done fifteen surgeries after mine.)
Her other issue was, well, the doctors hogged the good parking. "Doesn't anyone around here think?" she asked Matty. Matty just shrugged. Once we saw Green in the hall. Green looked at us blankly and went by without speaking. (Two months ago I had been almost his daughter.)
"Did you have a good summer?" Pan asked when he returned. "The colonels of Greece send you their greetings. Do you accept them?" Just how sick was he?
He found that he could turn my right leg slightly farther out than before and said that next year I'd ask him to do the other leg--yes I would--but that he would refuse. He then said that for the next year I had to carry a pillow everywhere I went and put it between my knees whenever I sat down. I just shrugged. He could no longer get a rise out of me.
Except for a glimpse of him on a street in 1973, that was the last time I saw Pan. A week or so later, we received a form letter from him saying that he had been passed over for the position of orthopedic chief and so he was leaving Children's to head a CP clinic at a community hospital. This didn't seem like the natural career path from Children's.
In September, school started again. It was up to me to figure out a way to get from class to class. I staggered here, took tiny steps there. My therapy became more occasional and desultory. We just did stretching. Finally I asked if we could work on balance. Matty said she didn't know how. She said she knew some things about CP but it was not "really her area."
"Why were you assigned to me?"
It had been the luck of the draw. She had an opening when my first appointment occurred. Anyway, they were supposed to get a variety of experiences. You couldn't always get the good cases.
I was someone's experience, someone's scut work. So this is what you got when you had therapy at famous places. (I need to add that nothing is all black or white. During the summer, while Pan vacationed, Matty had got me upright).
By November, I was moving as well as I ever would. My right leg felt like a limp yet rigid piece of spaghetti. The surgery diminished my ability to shift my weight from side to side. I was slowed way down. I focused on every step. I didn't just go like I thought I had a normal walk or something. Before, my legs didn't always do what my mind wanted them to do. Now, it seemed that my legs didn't always obey my neurological impulses. I juggled three disconnects rather than two.
Over the years, coping with a muscular injury overlaid on a motor control problem has taken a toll. Pan did not obliterate my future but he made my life harder--physically, emotionally and socially.
Early in 1972, Matty moved to California. With her leaving, my sorry association with Children's ended, because there was no one there to suggest otherwise. I never had a post-op muscle evaluation.
I wrote an essay on my surgery for the one teacher I had confided in. I said, "my opposition to surgery was irrational. I know it now. I knew it then. But they should have thought about my feelings."
That was my thinking nearly one year out. I did write the first of several letters I would write to Pan over the years, filling him in on what he had done, asking him for an apology. Except for once, I never heard back from him.
I started a double life--one in the here and now, one back with Pan. I never told--never tell--anyone new (except certain medical people) about the surgery.
Yet sometimes I scowl inappropriately. I give off an air of preoccupation. My relationships have tended to be superficial. Pan remains my king of clubs.
In 1975, while I was in law school, I read a newspaper story about a local football player and his family. When his son had been diagnosed with CP at Children's, the doctor looked at them and said, "what do you think of that?" They were told to stretch his son's legs twice a day. It got to the point that the kid cried at the sight of his parents. They said "bag this" and enrolled him in a swimming class. It was the first time that I heard of anyone else having a bad experience at Children's.
By the end of that year, I knew what my mother's operation had been. In 1976, she died.
Before the bad stuff started, she had been marvelous.
During 1977 I moved to another northeastern state and began my strange career as a property/casualty insurance lawyer. At work I became friendly with a woman who had a child with a disability. She told me how hard it was for her to have a rational conversation about him with professionals. It was as if their attitude was "if you're so smart, why did you have this kid?"
On a trip to San Francisco in 1978, I looked up Matty. We had lunch at Fisherman's Wharf. She had mellowed some. For old times' sake, we discussed how terribly I treated Pan, but then she said she was sorry about everything.
She said that, as I knew, adductor myotomies had been very "popular" at Children's. I had not specifically known that, although there were signs. Matty said that the expectation had been that 50% of the time, there would be a "minimal" improvement.
My parents had been pushed to bet the farm on a "popular" operation that had a 50% change of giving minimal improvement.
I said my mother had assumed that the reason Pan was so strident about me having the operation was that it was essential and that there would be a dramatic change.
"How sophisticated was she?" asked Matty.
My mother had believed that most people, including doctors at famous places, acted like she did--aboveboard and in good faith. She had checked with Auburn, checked with Green, read articles about Children's. Now, Matty was implying that for her to trust Children's when literally everyone she talked to in Boston told her to trust Children's was naïve. Something was wrong here.
I never stopped hoping that what man had done, man (or woman) could undo. I started physical therapy on a private basis with Bette, the head of the physical restoration program at the local Easter Seals.
The first hurdle was medical permission.
I told Bette I did not have an orthopedist and didn't want one. She said my "regular" doctor could authorize therapy. I hadn't known that.
Bette said I needed tie shoes. I said I couldn't tie laces. She suggested velcro. I got the shoes. This was a minimal improvement. For several years, Bette would be my ace in the hole.
I wrote away for my records from Children's so Bette could see what I had been like before. Children's neglected to send me Pan's records or my outpatient PT records but did send my records for my ten days as an inpatient. Bette read the write-ups and then handed the pages over to me. "These are worthless. They're too superficial."
By myself, I zeroed on the reason given in my records for my surgery which Pan had done with first assistant D. Greenleaf and second assistant M.C. Vaughan. "It was thought that a adductor myotomy might improve her gait. Her adductors are tight."
That was that.
By 1979 I had oozed into the disability rights movement and for the first time met other adults with disabilities. Many of these people had been "treated" at a local pediatric orthopedic hospital I'll call Newcastle, since this article really isn't about Newcastle. The first thing I heard about was the amphitheater where the kids were examined in front of students and whoever. This was a new one on me.
Then I heard about the surgery--lots of it. As someone said, "surgery was all there was." Three, five, seven, eighteen operations on one person. Sometimes one surgery would be successful and then, well, the next one would be sort of a mistake.
I asked Bette what the hell was going on. She said that kids at Newcastle were looked at from an orthopedic perspective but did not necessarily get rehab. For kids who had lasting disabilities rather than, say, a club foot, that was a problem. People did not understand that. Even most primary physicians did not recognize this.
Newcastle was not Children's or visa versa but hearing about Newcastle helped me put a few things together: When I left New Jersey and went to Children's, I had slipped from one treatment system to another. I had gone from the rehab model, where the emphasis to varying degrees is on the whole person, to the medical model, where the emphasis is on fixing something. This had happened by chance.
President Carter paid a campaign visit to Newcastle in 1980. I saw him on the news asking a little girl in a wheelchair whether she liked it there. "Yes" she said wanly. Staff in the background beamed. Jimmy Carter was the most decent of people, but I wanted to tell him that places like Newcastle had an underside.
In 1982 Bette persuaded me to go to the gait laboratory that Newcastle had just opened for children and adults. We'd make it an one-time thing and at least I'd have an orthopedic baseline.
The gait lab was presided over by Gray, supposedly one of Newcastle's most personable doctors.
I went into the lab determined to start things off on the right foot (so to speak). I was one member of the professional community consulting another member of the community. I thrust out my hand to tall, lanky Gray who touched it and then dropped it. He told me to walk for him. I did and Gray exploded. "Oh God," he said to the technician. "Oh God! Look at that internal rotation! Oh God! We can't do anything for her."
Oh God! The son of Pan!
He decided to do the analysis anyway so they could bring me back in six months and see if there was any change. Apparently he hadn't gotten the message about this being a one-time thing. I said I wasn't coming back. He just shrugged.
He asked me if I had ever noticed a sudden difference in my walk. I told him about June 9, 1971. "A-ha!" he said, brightening up. "Jackie Perry says you should never operate on an athetoid," he said to his technician.
I indicated I was angry about what Pan did. Gray played the "eleven years ago, people didn't know what they know now" card. I said some people had known. He just shrugged.
Gray's "abnormal findings and recommendations" did give me things to chew on. His diagnosis was athetosis "with no real evidence of spasticity." So he agreed with Dr. Keats on this, rather than Pan. He also said that I had had an "adductor tenotomy" and that since then I felt that my gait had "slowly become less reliable."
Two things struck me as strange. First, Pan had called it "adductor myotomy." I decided this just must be a difference in speech--like "pack of cards" versus "deck." The other thing was I had said the change was sudden, not slow. Could he been confusing what I had said with what often happened?
Gray raised the possibility of surgery "to bring the right limb into the line of progression." (At least this operation had a goal.) Then he discarded the idea. He wrote that "in athetosis, surgery is always unpredictable, at best, and the morbidity of such a procedure would be fairly substantial in that she would be off weightbearing [for] at least 12 weeks. Therefore, I would tend to be extremely conservative." If this were being "extremely conservative," a centralist would be a butcher.
I thought quite a lot about Gray. It occurred to me that if your focus is on a fix, working with individuals with lifelong disabilities must be aggravating--aggravating enough to make you swear or become a gambling man. The difference between Pan and Gray was that Gray, though steeped in the medical model, dimly realized there was a joker in the deck.
My double life went on. I was experienced at my job now, got good evaluations. I stumbled here, I stepped, stepped, stepped there. With Bette, I continued to demand to know why the same person could be treated differently at different places. Finally she said, "Don't you see? The approach an institution takes depends on where it gets its funding. If you're funded by the Easter Seals Society, you take one approach. If you get funding from a medical school, you take another. Residents need to be trained. If these places [pediatric orthopedic hospitals] were not surgically oriented, they'd go out of business." I clapped my hand over my mouth. After a few seconds, I said, "People don't know. They simply do not know."
In 1987 I had a meeting with Hoffman, the medical director at Newcastle, to discuss concerns disability rights activists had about the hospital. The meeting did not go well. He and I were speaking different tongues. I said that it seemed that the doctors did not always see kids with disabilities as people. Kids were examined in amphitheaters, etc. He countered by the saying that all the doctors had gone to good medical schools and were board certified. He said that most had teaching appointments. He looked at me to be sure I was impressed.
I said there was a sense that there was too much surgery going on. He said that in the past, many kids had multiple surgeries and missed a lot of school. They had had to do it because back then "surgery was all there was." I said that was not true. In the fifties and sixties, thousands of kids, of whom I had been one, had had various types of therapy at Easter Seals and other rehab centers. He just shrugged. Hoffman said that the number of surgeries performed per patient had decreased. They only did surgery when they thought there was a "reasonable chance" that a child would benefit from it.
I asked him to define "reasonable chance." He said that if there were an operation to improve my speech--and he had to tell me there was not--I'd jump at it. He did not see how slurred speech could be a boon to a lawyer.
Lacking a medical background, I did not think I could directly argue with him as to when surgery was appropriate. I decided just to stress that people should just be made aware of alternatives.
"Do you let people know that if they don't like Newcastle, there is an Easter Seals center in this area?" I asked.
"Well, our relationship with Easter Seals has been strained. The ladies have sometimes challenged our clinical judgment."
"People need to know about their options. Do you tell people about Easter Seals?"
Hoffman paused and then came up with an analogy. "You work for an insurance company. You wouldn't tell people to buy insurance from another company, would you?"
Good God! He was telling me straight out that Newcastle, a hospital that received charitable donations hand over fist, pursued its own interests like any other corporation.
My stare disconcerted him so he added that of course if they did not feel they could do something well, they would refer someone elsewhere. Then he ended the meeting.
When my parents decided to go ahead with the surgery insisted upon by Pan and blessed by Green, they had not considered the institutional context in which the advice was given. They had not realized that if second opinions were to be valid, they all had to be obtained outside of Children's and preferably outside of Boston, away from Children's thrall. Nothing had prepared them to be wary. Our experience before then had just been with a tiny outpatient rehab center and with a doctor who had no residents.
I would like to think that Pan and Green saw me as more than grist for Children's orthopedic mill and that Pan in his mechanical, disability-fearing way thought he was helping me. Nevertheless, he did surgery eagerly as a first resort and he worked within a system that let him do it.
Throughout the eighties, I practiced celestial navigation. I sought to understand what had happened to me at Children's by learning what had happened to other people with disabilities, what other institutions did. As the nineties started, I turned back to Pan.
I wrote to Children's and asked specifically for the records Pan himself had kept on me. They replied that Pan had taken the records on his patients with him when he left but they had forwarded my letter on to him.
Then, for the first and last time, I received a letter from Pan. The letterhead indicated that he was in private practice in a small Massachusetts town. He made no mention of all the letters I had sent him and just wrote tersely, "I do not have your records since these were left back at Children's Hospital."
That was that.
Children's in their reply, though, did enclose the 1970 x-ray report. The radiologist had noted that both my hips were "normal--well seated in sockets." That was another bit of information Pan with his creepy talk of hip dislocation had not revealed to us.
Suddenly, a memory came to me of Dr. Keats holding my X-rays up to the light and saying "these look good." So we had known! Why hadn't this registered? Why hadn't we chased it down with Pan, pointed it out to Green? Pan might have said that he wanted my hips to stay that way and then I could have said, "fine, the minute my hips begin to migrate, we can act." But I had not spoken.
In 1991, twenty years after my surgery, I had another hip x-ray. Both hips were still normal. I told the doctor I had always been afraid of dislocation. He said, "Huh? Barring some terrible accident, these babies won't move." It had never been in the cards.
By 1996 Bette was long gone and I had started physical therapy with Vicky. She said we would work on strength and control but not much stretching. This was because although the muscles of people with spasticity sometimes got tighter and tighter with age, this was not true with people with athetosis. Now I knew where Pan got the "tighter and "tighter" part.
I was in my forties now and felt some need to check in with an orthopedist. I made an appointment with Dr. Leonard in the Big Apple. I had heard he had experience with athetosis and with adults. Still, I was nervous as I sat in his office looking out at the East River. But he walked in, stretched out his hand and said, "It's a pleasure to meet you."
He asked about my job and my interests before taking my history. I mentioned Dr. Keats and he said he had known him, of course he had. He also knew of Gray, who was now at a prominent place in the mid-west (Gray seemed to have been more upwardly mobile than Pan). When he asked me who had operated on me at Children's, I said, "Pan."
"Pan. P-A-N. Pan."
"Haven't heard of him."
At the end, he said he had no quick fix for my present gait problems but he said it calmly, without getting unhinged.
In his report, Dr. Leonard said I had "generalized athetosis of a moderate degree." This echoed Dr. Keat's diagnosis and Gray's. He also noted that I had had an adductor tenotomy.
I asked Vicky how could I have been diagnosed as "mixed" at Children's. She said it was the type of mistake a doctor who was obtuse (Pan) or in a hurry or unfamiliar with the person (Green) could make. My tightness was more functional than actual. "It was a shame they didn't work things through," she said. Yes, it sure was.
It was the spring of 1998. The country chattered about the alleged relationship between Bill Clinton and a previously unknown woman. I was thinking of starting a new job. My ankles were wobbly. Vicky and I decided to do a video consultation with a physical therapist out West--Bev--who knew about orthotics. Little did I know that our poor and sorry deck was about to be shuffled one last time.
Bev began her report by saying, "Considering . . . that CP is chronic, there are no emergencies." She then made various suggestions and enclosed a stack of reading matter. I looked up her bio on the Internet. She had been in Massachusetts in the seventies. It had dawned on me by now that Pan had not been at the top of his game, but I had never met anyone I could trade opinions with. I e-mailed her. Had she known Pan? Her reply was "yes"--not in Boston but later. He had been "no great shakes."
In Bev's packet she had enclosed material from a Swiss orthopedist in his eighties. He wrote that his "adult CP patients suffer little from joint disorders.Intensive physiotherapy for 2-3 weeks including swimmingcan do wonders." He was looking "for ways to avoid soft tissue surgery because most of it is not logical and [is] harmful more than helpful, especially in the long run."
I e-mailed him telling him my story. He replied. This is some of what he said: "The physiological compensation for disorders of motor control can bring considerable benefits. They are adapted to the existing problems. Normal movement is not possible in any way. The best possible function is most helpful for the patient and cosmetic considerations must sometimes take a second place . . . Orthopedic surgeons have long been warned [not] to perform any operations on patients with athetosis. We have been fighting the great trend towards hip-adductor tenotomy for a long time because of the particular dangers of this operation . . . I have found that some improvement is almost always possible . . . Please do not despair, therefore, about the difficult situation."
I printed the e-mail out and looked at it, as if it would speak. Using different words and writing from across the Atlantic, he was saying the same thing that Dr. Keats had said 27 years ago! Full house! Grand Slam!
So I knew at the end what I had known at the beginning.Not quite. As usual, I had underestimated the Panster (and Children's).
"Vicky," I asked, "What's the difference between an adductor tenotomy and an adductor myotomy?"
"An adductor tenotomy is when you release the tendon around the adductor. That's what you had, right? An adductor myotomy is a more invasive procedure." Apparently so invasive that no doctor after Pan could believe that I had had it.
With my voice level, I said, "Explain it to me really simply--like I'm a six year old."
Vicky said, " With an adductor myotomy, they cut the muscle itself. It just weakens the leg. They don't do it to ambulatory people."
All this happened to me--to us--because my mother wanted me to have some occupational therapy before I went to college.
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