I was in Chicago this past weekend to celebrate my sister's graduation from Northwestern medical school - a momentous occasion during which I was able to vicariously experience the payoff of four years of grueling work, competition, self-doubt, clinical triumphs, and soul searching experienced by med students like my sibling. So, a big congratulations to her, and all of the other medical students who recently graduated and now begin lives of serving people, all amidst a complicated national system of health that often cuts the best of doctors a raw deal.
Coincidentally, while I was in Chicago I was fortunate enough to see Chicago Shakespeare Theatre's production of The Madness of George III, a brilliant production in which my UCSD professor Jamie Newcomb and my old friend Erik Hellman strutted their acting stuff. I say "coincidentally" because the production (which is the same story as the film The Madness of King George) revolves around the doctors (who treated George III, Britain's king during the American Revolution) during bouts of "madness." The king's condition would likely be classified today as the enzyme disorder porphyria, which causes skin problems and neurological complications. But back in the 18th century, the king's symptoms baffled doctors and led them to believe he was simply insane.
Watching the production with my newly-anointed-doctor-sister in the audience was a joy, partly because the show was a beautiful example of the way in which theatre functions to expose human beings to extraordinary lives and worlds beyond those which they know. I was proud that my discipline, one seemingly disparate from my sister's, was serving the noble purpose of sharing the complicated experiences of those who have come before her in the medical profession. It was a lovely intersection of the passions of two siblings.
And it made me think about the challenging reality of medicine - that doctors do the best they can with the information and knowledge they possess at a given time, even though the most inspiring ideas or rational practices can later be realized as mistakes. In the play, the doctors, confounded by the king's unfamiliar condition, prescribe solutions such as skin blistering, bloodletting, and denial of human interaction for the ailing king. While these practices perhaps seem ghastly given our contemporary medical knowledge, the play does a good job of presenting the ambiguity of the doctors' intentions, behaviors, and morality as they struggle to maintain their godlike status in the society of their day while attempting to treat a condition they do not understand.
It begged a question about our contemporary medical practices: what treatments or solutions that we use today will we someday look back on as "mistakes"? As infallible as we may consider modern medicine to be (particularly with the extensive research that now bolsters common medical practice), didn't the doctors of the 18th century consider their practices to be infallible as well? Isn't it likely that as we continue to gain knowledge about the human condition and the medical technology we now use, we'll make discoveries that make us think, "Wow, how could we ever have thought THAT was a good idea?!"
I can think of cases where this kind of re-consideration has already occurred with somewhat recent theoretical approaches or practices, particularly when it comes to health and wellness fads. For instance, think of the 1990s no-fat food craze during which throngs of people (this girl included) pumped their bodies full of tasteless, nutrition-less "food" items with the understanding that "fat was bad." It made sense at the time, although now it seems silly that we would have thought it wise to fill up on manufactured, chemically-altered, sugar-laden substances with the aim of being "healthier."
So, what will we retroactively reproach ourselves for in the future? Will we look back and say, "Why did we ever think it was a good idea to pop pills and fill up on energy-enhancing substances when we felt tired? Why didn't we just sleep?!" Like the bloodletting practices of centuries ago, will there be practices we look back on and think, "How did we ever NOT realize that (fill in the blank) was doing more harm than good, and maybe killing us?!" Will it be ritalin? Radiation therapies? Cosmetic enhancement surgeries? All of the above?
I particularly wonder about the areas in which we're so eager to find solutions, and where the desire to have bodies, conditions, and problems fixed rapidly may cloud our judgment of potential "solutions" that are proposed. In this regard, one example that relates to my own situation came to my mind.
You may have heard recently about the "exoskeleton" system that has enabled various folks with paralysis to walk. (If you haven't, here's an article) This is just one of many exciting initiatives that engineers, doctors, and scientists have been working on recently to improve the lives of people living with paralysis (other projects include electrical stimulation implants, stem cell therapies and more). As I've heard and read about these various projects and solutions, I feel conflicted. On one hand, I couldn't be more thrilled that these technologies are being developed, and could one day make the experience of living with a disability less challenging, or even nonexistent. As a person who has experienced firsthand the psychological, emotional, physical, and environmental difficulties of adapting to life after a spinal cord injury, I know how difficult it is. There have certainly been times when I've wished for something like an exoskeleton to enable me to hike with my family, or walk on the beach, or simply reach a high shelf in the grocery store.
And yet, I also can't deny a feeling of discomfort that forms in my gut when I read about these technologies. Now, let me clarify that it's not because I equate an exoskeleton with bloodletting, or because I doubt that these technologies would alleviate a great deal of suffering for individuals who have dealt with devastating disabling conditions. But I sometimes use my mind powers to laser beam myself 100 years into the future to think about the repercussions of these medical technologies and solutions. And, I suppose the biggest question that arises for me is, are we focusing on the right thing? The "right" kind of medicine?
Going back to the play about George III, it's important to keep in mind that the king's condition (as far as it can now be deduced) was a a real medical disorder, and one that would be treatable today thanks to the medical technology that has developed over the past couple of centuries. Still, one of the most devastating parts of the story is that the doctors were so focused on treating his condition and figuring out a solution to his most obvious ailments that they disregarded less overt potential causes of his condition, and were oblivious to the physical, psychological, and emotional pain they were causing him as they experimented with different treatments.
In thinking about a condition like spinal cord injury, it begs the question, is an exoskeleton really the answer? I've often felt that many people who have never experienced spinal cord injury or paralysis assume that the inability to walk is the paramount difficulty with such a condition. Now, walking and standing are certainly important, particularly when we live in a world that is mostly built for two-legged standing people. But there are a host of other complications that come with spinal cord injury that, in my mind, are more important to address than the non-walking piece. To name a few: bladder and bowel sensation and function, sexual function, sensation of pain, circulation, bone degeneration, or the ability to engage certain muscles that are paralyzed (such as arm muscles for quadriplegics, or core muscles for paraplegics). When I think of the challenges related to some of these areas, I think walking schmalking!
The struggle to walk is more visible than other challenges faced by those with conditions like paralysis, which is why I think it often gets more attention. It's almost as though if we can make a paralyzed person walk again (or even just assume the appearance of walking, as with the exoskeleton contraption, even if their body isn't actually contributing something to the act of walking), then we can pretend like they're healed and go about our business without worrying about them.
I admit that I am somewhat biased when it comes to considering possibilities that would enable a person to walk again after paralysis, largely because I have spent years working to reach a place where I'm confident and happy with who I am, AS I am. Therefore, encountering technologies that suggest that my current way of being is in some way imperfect, damaged, or in need of fixing is hard for me. But, it's also this: when I think of all the amazing things I can still do in all my paralyzed splendor - acting, singing, sports, and leading a healthy and productive life filled with joy - it pains me to think of other people missing out on all the wonderful things that life has to offer because they spend so much time and energy on trying to get back to something they WERE, rather than moving forward and embracing the new possibilities that exist in who they ARE. I know folks who spend copious amounts of time and money in therapy programs, research trials, and other initiatives trying to reform their bodies to pre-injury states of being, and then end up devastated when these possibilities don't achieve the kind of results they seek. Moreover, they end up behind the eight ball in learning to cope because they live in denial of the reality of their new situations.
So, I wonder, will we look back in 100 years and think, why were we spending millions of dollars to develop a $15,000 exoskeleton rather than spending a fraction of the cost to improve wheelchair technology? Or make airplanes more accessible to wheelchair-using travelers? Or pay for more people with disabilities to attend college? Or provide more support to the Paralympics? Or ensure that people with disabilities have appropriate durable medical equipment? Or expanding accessible public transportation? Maybe getting a fleet of taxis in New York that is actually wheelchair accessible? And, instead of trying to mold everyone back into some physical conception of what a human being is supposed to be, why didn't we spend more time and energy on expanding our understanding and acceptance of the differences and diversities that humans can - and inevitably will - embody?
Don't get me wrong...hope is good. So is progress. And, I believe that science and medicine will likely produce some amazing possibilities for improvement of conditions like spinal cord injury over the next few decades. I also realize that there are people whose perspectives are different from my own, and they would rather offer their lives up to science and medicine in pursuit of a possibility to, say, walk again, rather than finding a way to be content with their bodies as they are. I just propose that a balance should be maintained. Don't spend every waking minute in a therapy lab trying to walk and therefore miss out on meaningful relationships with family and friends. Don't put so much emphasis on trying to achieve a certain type of physical embodiment that it prevents you from seeing the value in people and bodies who don't - and never will - attain such an embodiment. Don't focus so much on the solution that you forget to think about why there's a problem in the first place.
In the end, I suppose it's important to remember what one of the speakers at my sister's medical school graduation asserted: that medicine is in many ways more an art than a science. It's sometimes difficult to tell what the "right" type of medicine or technology or treatment is in the moment. And, different people will have different ideas of what the "right" thing is...some will want an exoskeleton to help them walk, and others will be content to stay sitting, as long as it's in a wheelchair that endures the barrage of daily life. And, who knows what 100 years of advancement in medicine will yield...there's no way to know right now. So, doctors do the best they can with what they have. They are not gods, but they ARE extraordinary human beings who do their best to serve each patient they encounter in the best possible way.
So for now, I'll just say that I'm proud of my sister, who has put so much of herself into helping others and will do so for years to come. And, I'm grateful for the doctors that came before her who made it possible for me to be here to enjoy each new glorious day on this earth.
Coincidentally, while I was in Chicago I was fortunate enough to see Chicago Shakespeare Theatre's production of The Madness of George III, a brilliant production in which my UCSD professor Jamie Newcomb and my old friend Erik Hellman strutted their acting stuff. I say "coincidentally" because the production (which is the same story as the film The Madness of King George) revolves around the doctors (who treated George III, Britain's king during the American Revolution) during bouts of "madness." The king's condition would likely be classified today as the enzyme disorder porphyria, which causes skin problems and neurological complications. But back in the 18th century, the king's symptoms baffled doctors and led them to believe he was simply insane.
Watching the production with my newly-anointed-doctor-sister in the audience was a joy, partly because the show was a beautiful example of the way in which theatre functions to expose human beings to extraordinary lives and worlds beyond those which they know. I was proud that my discipline, one seemingly disparate from my sister's, was serving the noble purpose of sharing the complicated experiences of those who have come before her in the medical profession. It was a lovely intersection of the passions of two siblings.
And it made me think about the challenging reality of medicine - that doctors do the best they can with the information and knowledge they possess at a given time, even though the most inspiring ideas or rational practices can later be realized as mistakes. In the play, the doctors, confounded by the king's unfamiliar condition, prescribe solutions such as skin blistering, bloodletting, and denial of human interaction for the ailing king. While these practices perhaps seem ghastly given our contemporary medical knowledge, the play does a good job of presenting the ambiguity of the doctors' intentions, behaviors, and morality as they struggle to maintain their godlike status in the society of their day while attempting to treat a condition they do not understand.
It begged a question about our contemporary medical practices: what treatments or solutions that we use today will we someday look back on as "mistakes"? As infallible as we may consider modern medicine to be (particularly with the extensive research that now bolsters common medical practice), didn't the doctors of the 18th century consider their practices to be infallible as well? Isn't it likely that as we continue to gain knowledge about the human condition and the medical technology we now use, we'll make discoveries that make us think, "Wow, how could we ever have thought THAT was a good idea?!"
I can think of cases where this kind of re-consideration has already occurred with somewhat recent theoretical approaches or practices, particularly when it comes to health and wellness fads. For instance, think of the 1990s no-fat food craze during which throngs of people (this girl included) pumped their bodies full of tasteless, nutrition-less "food" items with the understanding that "fat was bad." It made sense at the time, although now it seems silly that we would have thought it wise to fill up on manufactured, chemically-altered, sugar-laden substances with the aim of being "healthier."
So, what will we retroactively reproach ourselves for in the future? Will we look back and say, "Why did we ever think it was a good idea to pop pills and fill up on energy-enhancing substances when we felt tired? Why didn't we just sleep?!" Like the bloodletting practices of centuries ago, will there be practices we look back on and think, "How did we ever NOT realize that (fill in the blank) was doing more harm than good, and maybe killing us?!" Will it be ritalin? Radiation therapies? Cosmetic enhancement surgeries? All of the above?
I particularly wonder about the areas in which we're so eager to find solutions, and where the desire to have bodies, conditions, and problems fixed rapidly may cloud our judgment of potential "solutions" that are proposed. In this regard, one example that relates to my own situation came to my mind.
You may have heard recently about the "exoskeleton" system that has enabled various folks with paralysis to walk. (If you haven't, here's an article) This is just one of many exciting initiatives that engineers, doctors, and scientists have been working on recently to improve the lives of people living with paralysis (other projects include electrical stimulation implants, stem cell therapies and more). As I've heard and read about these various projects and solutions, I feel conflicted. On one hand, I couldn't be more thrilled that these technologies are being developed, and could one day make the experience of living with a disability less challenging, or even nonexistent. As a person who has experienced firsthand the psychological, emotional, physical, and environmental difficulties of adapting to life after a spinal cord injury, I know how difficult it is. There have certainly been times when I've wished for something like an exoskeleton to enable me to hike with my family, or walk on the beach, or simply reach a high shelf in the grocery store.
And yet, I also can't deny a feeling of discomfort that forms in my gut when I read about these technologies. Now, let me clarify that it's not because I equate an exoskeleton with bloodletting, or because I doubt that these technologies would alleviate a great deal of suffering for individuals who have dealt with devastating disabling conditions. But I sometimes use my mind powers to laser beam myself 100 years into the future to think about the repercussions of these medical technologies and solutions. And, I suppose the biggest question that arises for me is, are we focusing on the right thing? The "right" kind of medicine?
Going back to the play about George III, it's important to keep in mind that the king's condition (as far as it can now be deduced) was a a real medical disorder, and one that would be treatable today thanks to the medical technology that has developed over the past couple of centuries. Still, one of the most devastating parts of the story is that the doctors were so focused on treating his condition and figuring out a solution to his most obvious ailments that they disregarded less overt potential causes of his condition, and were oblivious to the physical, psychological, and emotional pain they were causing him as they experimented with different treatments.
In thinking about a condition like spinal cord injury, it begs the question, is an exoskeleton really the answer? I've often felt that many people who have never experienced spinal cord injury or paralysis assume that the inability to walk is the paramount difficulty with such a condition. Now, walking and standing are certainly important, particularly when we live in a world that is mostly built for two-legged standing people. But there are a host of other complications that come with spinal cord injury that, in my mind, are more important to address than the non-walking piece. To name a few: bladder and bowel sensation and function, sexual function, sensation of pain, circulation, bone degeneration, or the ability to engage certain muscles that are paralyzed (such as arm muscles for quadriplegics, or core muscles for paraplegics). When I think of the challenges related to some of these areas, I think walking schmalking!
The struggle to walk is more visible than other challenges faced by those with conditions like paralysis, which is why I think it often gets more attention. It's almost as though if we can make a paralyzed person walk again (or even just assume the appearance of walking, as with the exoskeleton contraption, even if their body isn't actually contributing something to the act of walking), then we can pretend like they're healed and go about our business without worrying about them.
I admit that I am somewhat biased when it comes to considering possibilities that would enable a person to walk again after paralysis, largely because I have spent years working to reach a place where I'm confident and happy with who I am, AS I am. Therefore, encountering technologies that suggest that my current way of being is in some way imperfect, damaged, or in need of fixing is hard for me. But, it's also this: when I think of all the amazing things I can still do in all my paralyzed splendor - acting, singing, sports, and leading a healthy and productive life filled with joy - it pains me to think of other people missing out on all the wonderful things that life has to offer because they spend so much time and energy on trying to get back to something they WERE, rather than moving forward and embracing the new possibilities that exist in who they ARE. I know folks who spend copious amounts of time and money in therapy programs, research trials, and other initiatives trying to reform their bodies to pre-injury states of being, and then end up devastated when these possibilities don't achieve the kind of results they seek. Moreover, they end up behind the eight ball in learning to cope because they live in denial of the reality of their new situations.
So, I wonder, will we look back in 100 years and think, why were we spending millions of dollars to develop a $15,000 exoskeleton rather than spending a fraction of the cost to improve wheelchair technology? Or make airplanes more accessible to wheelchair-using travelers? Or pay for more people with disabilities to attend college? Or provide more support to the Paralympics? Or ensure that people with disabilities have appropriate durable medical equipment? Or expanding accessible public transportation? Maybe getting a fleet of taxis in New York that is actually wheelchair accessible? And, instead of trying to mold everyone back into some physical conception of what a human being is supposed to be, why didn't we spend more time and energy on expanding our understanding and acceptance of the differences and diversities that humans can - and inevitably will - embody?
Don't get me wrong...hope is good. So is progress. And, I believe that science and medicine will likely produce some amazing possibilities for improvement of conditions like spinal cord injury over the next few decades. I also realize that there are people whose perspectives are different from my own, and they would rather offer their lives up to science and medicine in pursuit of a possibility to, say, walk again, rather than finding a way to be content with their bodies as they are. I just propose that a balance should be maintained. Don't spend every waking minute in a therapy lab trying to walk and therefore miss out on meaningful relationships with family and friends. Don't put so much emphasis on trying to achieve a certain type of physical embodiment that it prevents you from seeing the value in people and bodies who don't - and never will - attain such an embodiment. Don't focus so much on the solution that you forget to think about why there's a problem in the first place.
In the end, I suppose it's important to remember what one of the speakers at my sister's medical school graduation asserted: that medicine is in many ways more an art than a science. It's sometimes difficult to tell what the "right" type of medicine or technology or treatment is in the moment. And, different people will have different ideas of what the "right" thing is...some will want an exoskeleton to help them walk, and others will be content to stay sitting, as long as it's in a wheelchair that endures the barrage of daily life. And, who knows what 100 years of advancement in medicine will yield...there's no way to know right now. So, doctors do the best they can with what they have. They are not gods, but they ARE extraordinary human beings who do their best to serve each patient they encounter in the best possible way.
So for now, I'll just say that I'm proud of my sister, who has put so much of herself into helping others and will do so for years to come. And, I'm grateful for the doctors that came before her who made it possible for me to be here to enjoy each new glorious day on this earth.
Well said, and quite insightful. You are a fantastic writer. Congrats to your sister, too!
ReplyDeleteI really appreciate your view on these issues.
ReplyDeleteThanks for the insight, Regan.
You are a compelling writer. Keep it up!