Awesome superpower comes with terrible price; also, vice versa
March 5, 2014 9:40 AM Subscribe
At the finish of every race, she staggers and crumples. Kayla Montgomery is a a high school track star in North Carolina. Kayla Montgomery has early-onset multiple sclerosis. The two are apparently related.
Because M.S. blocks nerve signals from Montgomery’s legs to her brain, particularly as her body temperature increases, she can move at steady speeds that cause other runners pain she cannot sense, creating the peculiar circumstance in which the symptoms of a disease might confer an athletic advantage.
Apologies in advance if anything in this post seems to trivialize the actual problems of MS. My father has had diagnosed MS for about 20 years now, and the later stages are nothing to laugh at.
My intent was this post was more wonder that at any stage MS could be more of an advantage than a disadvantage. Kayla's use of it, for example, seems to imply that the lack of pain sensation is a narrowly focused sort of advantage (hurdling would be right out).
Also, forgot to credit kottke.org for the original link, especially since he mentioned the analogue to the late Jure Robič, the late Slovene ultracyclist.
posted by ivan ivanych samovar at 9:49 AM on March 5, 2014 [2 favorites]
My intent was this post was more wonder that at any stage MS could be more of an advantage than a disadvantage. Kayla's use of it, for example, seems to imply that the lack of pain sensation is a narrowly focused sort of advantage (hurdling would be right out).
Also, forgot to credit kottke.org for the original link, especially since he mentioned the analogue to the late Jure Robič, the late Slovene ultracyclist.
posted by ivan ivanych samovar at 9:49 AM on March 5, 2014 [2 favorites]
sadly, stupidsexyflanders, they have figured out a way to do it, sort of.
Toradol culture in the NFL
posted by ivan ivanych samovar at 9:51 AM on March 5, 2014 [3 favorites]
Toradol culture in the NFL
posted by ivan ivanych samovar at 9:51 AM on March 5, 2014 [3 favorites]
"Pain she cannot sense" worries me in the same way that teenagers playing tackle football worries me. Winning is great. I get that people like winning. I get that winning might be even more important for someone with a chronic and progressive illness. But are the adults here actually questioning whether this is safe or whether she might end up injured in ways that decrease her mobility long-term? Pain is an important signal. I know she's 18 now which might be nominally an adult, but obviously full adult judgment is a long way off, and it sounds like she started this years ago.
posted by Sequence at 10:05 AM on March 5, 2014 [6 favorites]
posted by Sequence at 10:05 AM on March 5, 2014 [6 favorites]
If I had to guess, I'd imagine that knowing you're likely to spend a significant part of your life in a wheelchair, and that this may be the only opportunity to run, fast, on your own legs, is a bigger performance booster than lack of sensation.
Maybe she's winning because she runs herself to the point of collapse every time, while the other runners don't.
posted by Kadin2048 at 10:07 AM on March 5, 2014 [31 favorites]
Maybe she's winning because she runs herself to the point of collapse every time, while the other runners don't.
posted by Kadin2048 at 10:07 AM on March 5, 2014 [31 favorites]
My father passed away from complications of MS twenty years ago. At that time, neurologists used to counsel patients with MS not to overexert or overheat themselves (including in warm weather or with a high fever) in order to avoid exacerbations. Have they moved away from that in the interim? It used to be conventional wisdom with regard to multiple sclerosis.
Or even immediate damage. This is a risk that many MS patients experience every single day. Numbness may prevent them from feeling damage being done by hot or cold conditions. My father once burned his arm while leaning on a stove that he didn't realize was on and hot.
There is a strong possibility that Kayla could injure herself (pull a tendon, dislocate a joint, sprain an ankle, rip cartilage, etc.,) and not feel what has happened until after she has made the injury worse. If I were her coach or doctor I'd be advising her to stop running. A short term victory is not worth permanent damage, especially if said injury could prevent her from being as mobile as possible while living with her disability.
posted by zarq at 10:35 AM on March 5, 2014 [2 favorites]
“Pushing that limit is what endurance sports are all about. But if you can’t feel those signals and push from tingling to extreme or prolonged numbness, you could be doing damage that we won’t even know about until down the road. It’s a paradox.”
Or even immediate damage. This is a risk that many MS patients experience every single day. Numbness may prevent them from feeling damage being done by hot or cold conditions. My father once burned his arm while leaning on a stove that he didn't realize was on and hot.
There is a strong possibility that Kayla could injure herself (pull a tendon, dislocate a joint, sprain an ankle, rip cartilage, etc.,) and not feel what has happened until after she has made the injury worse. If I were her coach or doctor I'd be advising her to stop running. A short term victory is not worth permanent damage, especially if said injury could prevent her from being as mobile as possible while living with her disability.
posted by zarq at 10:35 AM on March 5, 2014 [2 favorites]
Until I'm in that situation, I honestly don't know if I could say it's better to play it safe in the hope of maintaining some mobility down the road, or if it's better to soar to your limits now, while you can. I can see where, if it's likely you'll spend the next 40 or 50 years in a wheelchair, it'd be awfully tempting to run as hard as you can, while you can, because at least you'd have that experience (if only briefly), and the memories. Sort of a "better to have loved and lost..."
posted by xedrik at 10:50 AM on March 5, 2014 [8 favorites]
posted by xedrik at 10:50 AM on March 5, 2014 [8 favorites]
While I agree that her parents should be playing an active and informed role in how hard she is competing, it's her disease, she's presumably fully aware she has it, and she can do whatever the hell she wants with it.
posted by dry white toast at 11:09 AM on March 5, 2014 [1 favorite]
posted by dry white toast at 11:09 AM on March 5, 2014 [1 favorite]
She isn't nominally an adult, she is one. Knowing what might in store for her later, maybe she's choosing to burn twice as bright. Applying "normal" rules to someone in her kind of situation is about making everyone else feel better, not her.
posted by spaltavian at 11:18 AM on March 5, 2014 [3 favorites]
posted by spaltavian at 11:18 AM on March 5, 2014 [3 favorites]
Relevant to zarq et alia's concerns about the very real physical risks that Ms. Montgomery is taking, an earlier MeFi post about a young MMA fighter with Downs syndrome which raised many of the same concerns about a young person's ability to accurately gauge risk.
I would hope that she is able to trade off her desire to run fast against the risk that she might contract some career-ending injury. Anything that takes too long for recovery stands a chance of overlapping with the progress of the MS.
Point of anecdata: I am old enough to know multiple people who have blown out their knees running, playing football, playing Twister; their tendons typing or drumming. There is an elevated risk of damaging yourself if you can't feel as much, but the risk is always there. Depending on how fast the MS progresses, she may not even be able to compete all through college regardless of injury.
posted by ivan ivanych samovar at 11:34 AM on March 5, 2014
I would hope that she is able to trade off her desire to run fast against the risk that she might contract some career-ending injury. Anything that takes too long for recovery stands a chance of overlapping with the progress of the MS.
Point of anecdata: I am old enough to know multiple people who have blown out their knees running, playing football, playing Twister; their tendons typing or drumming. There is an elevated risk of damaging yourself if you can't feel as much, but the risk is always there. Depending on how fast the MS progresses, she may not even be able to compete all through college regardless of injury.
posted by ivan ivanych samovar at 11:34 AM on March 5, 2014
I was diagnosed with MS nearly twelve years ago.
If I had listened back then to every well-meaning person who told me to "take it easy" and not exert myself, I would never have quit my desk job and gone to nursing school, never discovered the profound joy of doing my life's work as a nurse at the hectic and physically demanding bedside, never discovered how much I love strenuous outdoor activities like hiking, and I certainly wouldn't be going on a week-long sea kayaking vacation soon. Life is far, far better than I could have imagined that terrible day the doctor looked over his glasses and broke the bad news.
But there's also never a day that goes by where I don't remember that I have MS. Every day I feel pursued. Every day I look over my metaphorical shoulder, wondering if wheelchairs and incontinence and brain shrinkage have gained on me.
So that girl wants to run until she falls down? I hope she runs like hell for as long as she possibly can. I hope she gets to feel like she's outrunning it, even just for a second, and I hope it's the best thing she's ever felt.
posted by jesourie at 11:43 AM on March 5, 2014 [97 favorites]
If I had listened back then to every well-meaning person who told me to "take it easy" and not exert myself, I would never have quit my desk job and gone to nursing school, never discovered the profound joy of doing my life's work as a nurse at the hectic and physically demanding bedside, never discovered how much I love strenuous outdoor activities like hiking, and I certainly wouldn't be going on a week-long sea kayaking vacation soon. Life is far, far better than I could have imagined that terrible day the doctor looked over his glasses and broke the bad news.
But there's also never a day that goes by where I don't remember that I have MS. Every day I feel pursued. Every day I look over my metaphorical shoulder, wondering if wheelchairs and incontinence and brain shrinkage have gained on me.
So that girl wants to run until she falls down? I hope she runs like hell for as long as she possibly can. I hope she gets to feel like she's outrunning it, even just for a second, and I hope it's the best thing she's ever felt.
posted by jesourie at 11:43 AM on March 5, 2014 [97 favorites]
jesourie: "If I had listened back then to every well-meaning person who told me to "take it easy" and not exert myself, I would never have quit my desk job and gone to nursing school, never discovered the profound joy of doing my life's work as a nurse at the hectic and physically demanding bedside, never discovered how much I love strenuous outdoor activities like hiking, and I certainly wouldn't be going on a week-long sea kayaking vacation soon."
It's truly wonderful that you're able to do all of those things!
But I know my father (for example) wouldn't have been capable of it. He used to have stress-triggered exacerbations every year, same time of year (June and August) like clockwork. He was a teacher, and would experience one at the beginning and end of every summer, timed perfectly to the end and then the beginning of the school year. He also had a lot more difficulty getting his body to do what he wanted when the weather was very hot or if he was overtaxed. Overexertion affected him very poorly. Even early on, hiking would have been very difficult for him if not impossible.
With the differences you're describing, I wonder how much of that might be the type of MS he had, or his psychology, or the various medications he took. I know he wasn't outside the "norm" compared to his friends who were MS Society members. Of course, the 80's were a very different time for understanding and treating MS. Lots of experimentation.
posted by zarq at 12:14 PM on March 5, 2014 [1 favorite]
It's truly wonderful that you're able to do all of those things!
But I know my father (for example) wouldn't have been capable of it. He used to have stress-triggered exacerbations every year, same time of year (June and August) like clockwork. He was a teacher, and would experience one at the beginning and end of every summer, timed perfectly to the end and then the beginning of the school year. He also had a lot more difficulty getting his body to do what he wanted when the weather was very hot or if he was overtaxed. Overexertion affected him very poorly. Even early on, hiking would have been very difficult for him if not impossible.
With the differences you're describing, I wonder how much of that might be the type of MS he had, or his psychology, or the various medications he took. I know he wasn't outside the "norm" compared to his friends who were MS Society members. Of course, the 80's were a very different time for understanding and treating MS. Lots of experimentation.
posted by zarq at 12:14 PM on March 5, 2014 [1 favorite]
Maybe she's winning because she runs herself to the point of collapse every time, while the other runners don't.
Kinesthesiology research at least at the point when The Lore of Running was published has basically arrived at the consensus that your brain slows you down in distance races before you get to the point of that collapse or death. When that does happen, as when Alberto Salazar was read his last rites in the '78 Falmouth Road Race, something else is the matter like heat stroke (Malcolm Gladwell wrote a New Yorker article I won't link to basically stating that Salazar's ability to motivate himself closer to death than the other runners made him a superior racer, which is almost certainly untrue).
It seems like Montgomery's "central governor" mechanism is what MS is interfering with. I hope some college coach takes a chance and gets her a big scholarship as the speed of her progress shows she could be a huge contributor to any NCAA team.
posted by Luminiferous Ether at 12:14 PM on March 5, 2014 [1 favorite]
Kinesthesiology research at least at the point when The Lore of Running was published has basically arrived at the consensus that your brain slows you down in distance races before you get to the point of that collapse or death. When that does happen, as when Alberto Salazar was read his last rites in the '78 Falmouth Road Race, something else is the matter like heat stroke (Malcolm Gladwell wrote a New Yorker article I won't link to basically stating that Salazar's ability to motivate himself closer to death than the other runners made him a superior racer, which is almost certainly untrue).
It seems like Montgomery's "central governor" mechanism is what MS is interfering with. I hope some college coach takes a chance and gets her a big scholarship as the speed of her progress shows she could be a huge contributor to any NCAA team.
posted by Luminiferous Ether at 12:14 PM on March 5, 2014 [1 favorite]
I just lost a family member who'd suffered from MS for 40 years, and been utterly immobile for the last 15. Run on, Kayla.
posted by TwoStride at 12:50 PM on March 5, 2014
posted by TwoStride at 12:50 PM on March 5, 2014
There's also Diane Van Deren, who had a lobectomy to fight her epileptic seizures. It also altered her ability to perceive the passing of time, which comes as a huge help while doing ultra-marathon running.
posted by themadthinker at 12:51 PM on March 5, 2014 [1 favorite]
posted by themadthinker at 12:51 PM on March 5, 2014 [1 favorite]
She has a 4.70 GPA? That's not a scale I recognize.
get offa my lawn
posted by norm at 12:56 PM on March 5, 2014
get offa my lawn
posted by norm at 12:56 PM on March 5, 2014
Maybe she's winning because she runs herself to the point of collapse every time, while the other runners don't.
Vincent: You want to know how I did it? This is how I did it, Anton: I never saved anything for the swim back.
posted by Nonsteroidal Anti-Inflammatory Drug at 12:57 PM on March 5, 2014 [13 favorites]
Vincent: You want to know how I did it? This is how I did it, Anton: I never saved anything for the swim back.
posted by Nonsteroidal Anti-Inflammatory Drug at 12:57 PM on March 5, 2014 [13 favorites]
zarq wrote the 80's were a very different time for understanding and treating MS
Oh yes. The newer disease-modifying medications have made a huge difference in slowing the progression of disability and reducing the number of relapses. Every appointment at the infusion center is cause for celebration.
Like I imagine it was for your dad, any physical activity I do comes with a price. I take stimulant medications to help manage the fatigue. Overheating, even just by taking a shower that's too warm, can make me feel like crap for hours, so when I do something physical I do it during the coolest part of the day and I always carry cooling packs with me. I know that if I hike on Saturday, I'll have to spend Sunday on the couch, so I plan accordingly. If I have an unexpectedly stressful or long shift at work one day, the following day I have to cancel my plans. I took two weeks off of work for my one week kayaking vacation--one for the trip, and one to recover.
This kind of energy spending and budgeting is a daily calculation--take some from the bank, pay it back later--as I'm sure it is for Kayla. I guess I could maintain a lower, more consistent level of activity every day instead of these peaks of activity and valleys of recuperation (as could she). But right now, the value of my job and my hobbies outweighs the pain and frustration of the need for recuperation. That will almost certainly change some day as my physical abilities erode; I hope that day is far, far away for me, and for Kayla.
posted by jesourie at 1:08 PM on March 5, 2014 [3 favorites]
Oh yes. The newer disease-modifying medications have made a huge difference in slowing the progression of disability and reducing the number of relapses. Every appointment at the infusion center is cause for celebration.
Like I imagine it was for your dad, any physical activity I do comes with a price. I take stimulant medications to help manage the fatigue. Overheating, even just by taking a shower that's too warm, can make me feel like crap for hours, so when I do something physical I do it during the coolest part of the day and I always carry cooling packs with me. I know that if I hike on Saturday, I'll have to spend Sunday on the couch, so I plan accordingly. If I have an unexpectedly stressful or long shift at work one day, the following day I have to cancel my plans. I took two weeks off of work for my one week kayaking vacation--one for the trip, and one to recover.
This kind of energy spending and budgeting is a daily calculation--take some from the bank, pay it back later--as I'm sure it is for Kayla. I guess I could maintain a lower, more consistent level of activity every day instead of these peaks of activity and valleys of recuperation (as could she). But right now, the value of my job and my hobbies outweighs the pain and frustration of the need for recuperation. That will almost certainly change some day as my physical abilities erode; I hope that day is far, far away for me, and for Kayla.
posted by jesourie at 1:08 PM on March 5, 2014 [3 favorites]
I don't have MS but I do have health problems with mobility implications. I wish I'd run more and harder when I was Kayla's age and still could. In her shoes, I'd be running like the wind.
posted by immlass at 1:52 PM on March 5, 2014
posted by immlass at 1:52 PM on March 5, 2014
FWIW I know a few people with MS who find that keeping active through bicycling help keeps them more mobile. One says, "If I ride, I can run; if I don’t, I can’t walk."
I'm sure that is not a prescription for everyone--MS has pretty individualized symptoms as I understand it. But it does seem to help some people. I think bicycling is helpful for some people because you can keep the exertion at moderate levels, stay seated, and rest a lot--but keep up that level of exertion for an extended period. Last time I rode with my friend with MS, he was doing exactly that--coasting down every downhill, not riding aggressively uphill at all. But we rode for a good three or four hours. That seems to be the recipe that keeps him the healthiest.
posted by flug at 1:54 PM on March 5, 2014
I'm sure that is not a prescription for everyone--MS has pretty individualized symptoms as I understand it. But it does seem to help some people. I think bicycling is helpful for some people because you can keep the exertion at moderate levels, stay seated, and rest a lot--but keep up that level of exertion for an extended period. Last time I rode with my friend with MS, he was doing exactly that--coasting down every downhill, not riding aggressively uphill at all. But we rode for a good three or four hours. That seems to be the recipe that keeps him the healthiest.
posted by flug at 1:54 PM on March 5, 2014
I was a cross-country runner in high school (Kayla's alma mater Mt. Tabor was one of our big rivals). I now have a form of auto-immune arthritis that causes pain and fatigue that currently makes running impossible. I've switched to swimming, which I do enjoy, but I miss running every day, and I am so incredibly glad that I had the experience of being a runner when I could. Run on, Kayla!
posted by hydropsyche at 2:18 PM on March 5, 2014
posted by hydropsyche at 2:18 PM on March 5, 2014
jesourie: "Oh yes. The newer disease-modifying medications have made a huge difference in slowing the progression of disability and reducing the number of relapses. Every appointment at the infusion center is cause for celebration.
That's wonderful! It makes me so happy to hear that.
His treatments were frustrating. A constant disappointment to him. Many, like gamma globulin, had side effects that countered any benefit he received. I know some of the medications (and the high doses of vitamins) he took have since been determined ineffective against MS symptoms. Hyperbaric oxygen therapy, too.
This kind of energy spending and budgeting is a daily calculation--take some from the bank, pay it back later--as I'm sure it is for Kayla.
Yes. What you describe is very much what he went through, too. A hot shower or being outside in the heat would drain him. I didn't quite "get" that as a kid. I used to watch my father just collapse from exhaustion every day after he got home from school when I was young, and not really understand what he was dealing with. Of course, I was pretty young -- he was diagnosed the year I was born. By the time I was old enough to understand his MS, it was pretty far along.
I guess I've always had the impression that he didn't handle his symptoms the way you are describing -- with that kind of forethought and planning. "Spoon Theory" tactics applied to life. But I guess he must have.
jesourie: " I hope that day is far, far away for me, and for Kayla."
I hope so too.
posted by zarq at 2:30 PM on March 5, 2014
That's wonderful! It makes me so happy to hear that.
His treatments were frustrating. A constant disappointment to him. Many, like gamma globulin, had side effects that countered any benefit he received. I know some of the medications (and the high doses of vitamins) he took have since been determined ineffective against MS symptoms. Hyperbaric oxygen therapy, too.
This kind of energy spending and budgeting is a daily calculation--take some from the bank, pay it back later--as I'm sure it is for Kayla.
Yes. What you describe is very much what he went through, too. A hot shower or being outside in the heat would drain him. I didn't quite "get" that as a kid. I used to watch my father just collapse from exhaustion every day after he got home from school when I was young, and not really understand what he was dealing with. Of course, I was pretty young -- he was diagnosed the year I was born. By the time I was old enough to understand his MS, it was pretty far along.
I guess I've always had the impression that he didn't handle his symptoms the way you are describing -- with that kind of forethought and planning. "Spoon Theory" tactics applied to life. But I guess he must have.
jesourie: " I hope that day is far, far away for me, and for Kayla."
I hope so too.
posted by zarq at 2:30 PM on March 5, 2014
She isn't nominally an adult, she is one. Knowing what might in store for her later, maybe she's choosing to burn twice as bright. Applying "normal" rules to someone in her kind of situation is about making everyone else feel better, not her.
But she wasn't an adult at fifteen when she seems to have made that decision at first, and at eighteen, I'm not talking about legal culpability so much as I'm talking about the responsibility of more mature people in her life to advocate for responsible decision-making. If she'd just taken it up just now, with no sign of anybody pushing her, that'd be another story. I'm not even saying she shouldn't run, but there's a difference between still running in a way that you will enjoy, and running in a way that you are clearly running until your body gives out, and in a way that will mean you will not receive the normal signals of injury when you get them. The choices aren't "live fast, die young" and "live in a bubble". Just like you don't have to think kids need to be protected from all kinds of roughhousing to think that having institutions in place that encourage them to go out and give each other brain damage for the sake of competition is a bad plan.
I'm not concerned that she runs, I'm concerned at how big a part "winning" has in all of this and whether it's rewarding bad judgment.
posted by Sequence at 3:49 PM on March 5, 2014
But she wasn't an adult at fifteen when she seems to have made that decision at first, and at eighteen, I'm not talking about legal culpability so much as I'm talking about the responsibility of more mature people in her life to advocate for responsible decision-making. If she'd just taken it up just now, with no sign of anybody pushing her, that'd be another story. I'm not even saying she shouldn't run, but there's a difference between still running in a way that you will enjoy, and running in a way that you are clearly running until your body gives out, and in a way that will mean you will not receive the normal signals of injury when you get them. The choices aren't "live fast, die young" and "live in a bubble". Just like you don't have to think kids need to be protected from all kinds of roughhousing to think that having institutions in place that encourage them to go out and give each other brain damage for the sake of competition is a bad plan.
I'm not concerned that she runs, I'm concerned at how big a part "winning" has in all of this and whether it's rewarding bad judgment.
posted by Sequence at 3:49 PM on March 5, 2014
Maybe she's winning because she runs herself to the point of collapse every time, while the other runners don't.
Or maybe not, as it sounds like the collapse is a lack of the ability to co-ordinate changing movement from running to standing, not necessarily a sign that she used everything she had: it says "she can continue moving forward as if on autopilot, but any disruption, like stopping, makes her lose control."
posted by the agents of KAOS at 6:05 PM on March 5, 2014
Or maybe not, as it sounds like the collapse is a lack of the ability to co-ordinate changing movement from running to standing, not necessarily a sign that she used everything she had: it says "she can continue moving forward as if on autopilot, but any disruption, like stopping, makes her lose control."
posted by the agents of KAOS at 6:05 PM on March 5, 2014
I'm surprised no one has raised this before, but some people push themselves past breaking through sheer willpower. In high school, the cross country coach used to be a great cross country runner, but in one race she tore (something) but pushed through and won the race, at the cost of her future as a competitive runner. While not feeling the pain is a distinct advantage, it does not wholly unbalance the field of play.
posted by filthy light thief at 7:21 PM on March 5, 2014
posted by filthy light thief at 7:21 PM on March 5, 2014
MS is a crazy weird disease, presenting a different set of symptoms in each person who has it. There's roughly half a dozen different types of MS, and you have the one you have until it changes to another. I've had it for 23 years and to this day no one can tell me with any certainty what type I have, or what course I might expect my disease to take.
My point is this: MS does not = eventual wheelchair. It *can* but it's nothing at all like a foregone conclusion.
posted by Failure31 at 2:24 PM on March 6, 2014 [1 favorite]
My point is this: MS does not = eventual wheelchair. It *can* but it's nothing at all like a foregone conclusion.
posted by Failure31 at 2:24 PM on March 6, 2014 [1 favorite]
Hidden Hills ultramarathoner, 52, with multiple sclerosis keeps on running for causes
posted by homunculus at 12:54 AM on March 10, 2014
posted by homunculus at 12:54 AM on March 10, 2014
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posted by stupidsexyFlanders at 9:47 AM on March 5, 2014 [3 favorites]