Monday, March 5, 2012

"Let's amputate your legs"

This may sound like a made up story, but it really happened. A couple of years ago I was visiting Poland in hopes of scheduling a surgery on my legs. Over the years my muscles and tendons became stiff and all the contracture  pulled my kneecaps up and I was looking to have it corrected the next Summer I went back. This ended up not happening because of all the Green Card issues that exploded later that year, but the story is interesting to tell, because it showed some really arrogant attitudes from the members of the medical profession all too familiar from the communist era. We ended up seeing one of the most highly regarded names in Polish orthopedics, a  professor ordinarius, privately of course on a paid for consultation basis. We really didn't know who to see at that point, because we really had no connections in the Cerebral Palsy circles anymore. And he seemed like a knowledgeable man to ask, because of his age and decades of experience. A gray haired, respected practitioner  and researcher. We were glad to have him see us and he was happy to take our money. From the first minutes it was becoming obvious that his experience with spastic limbs was limited at best and he didn't really know what to do with me. He wanted to say something just so it wouldn't seem like he was wasting our time and his, which he was.  As we were talking, he said,you're so highly functional and your upper body is strong, your legs seem to be holding you back. It is just an idea, but perhaps you could walk with prosthetic legs. He delivered it in a very nonchalant   fashion as if not realizing he just told my mother he wants to cut off healthy body parts for no apparent reason. She obviously got very upset and tried to argue with him as if he was planning to cut them off right there. The conversation got too silly for me so I just rolled my eyes and waited for it to be over. It was obvious  he wasn't the right man to help us. And it reminded me how when I was six and had surgeries on my legs that put me in a cast waist down for... weeks?, months? I don't even know and the doctors wouldn't let my parents see me because they knew better.And I think it's a broader problem. It seems to me that some medical practitioners are hostages to their limited perspective and they are not open enough to try other ideas. The "I know better" (even if I don't know anything about it) attitude is not only a product of a particular time or location. I also think that resistance to the Peto method is rooted in the same type of sentiment that prevents some to even entertain it as a possible approach. And just by watching my mother interact with the man I realized another deeply rooted thing. Utmost respect for the profession, no matter what. Even if you're dealing with an closed minded  person. We are ready to dismiss things, even if we don't know.  Some people will just say silly things. I almost had my legs amputated!  On the other end you have parents, who would try anything if it can possibly help.  But they don't often have the full information. To my doctor his suggestion  made more sense than alternatives that he didn't consider and didn't  know existed. Obviously we didn't go through it, but it opened a Pandora's box of questions I'm too afraid to ask.


  1. In the mid-eighties, shortly after the screening of Standing up for Joe, at the hight of the national CE-fever, I was at some CE-related event at the Houses of Parliament. I was approached by some beamish Sir Bufton-Tufton MP, exuding the desire to say something to indicate his positive, beefy good will.

    'What I can't understand though is why, if their legs don't work, they can't just have them amputated and artificial ones fitted...'

    I wonder whether the world as a whole understands cerebral palsy any better now.