Building a Mystery
I seem to have a really, really high tolerance for ambiguity compared to other people and a strong commitment to sticking to The Facts. So I have developed some best practices for finding a path forward in the face of incomplete information.
I didn't start out with some kind of mental model for my condition or whatever. Instead, I stumbled across things that seemed to make a difference and then tried to figure out what might be pertinent. WHY did this thing seem to do something beneficial?
One of my early experiences is that I began eating lunch at Chipotle and it seemed to really help. So I started with reading up on what was in the food there.
I learned that it is all organic and I looked up some of the spices and found that many of them had medicinal uses pertinent to the symptoms I had. They could be used to help with gut or sinus issues, generally speaking.
But that didn't quite seem to fully explain it. For wholly unrelated reasons, I happened to join a Yahoo Group called Autism-Mercury and it was there that I learned that cilantro can be used to do chelation -- in other words to treat for metal poisoning.
I have a long history of dental problems dating back to early childhood and still have a mouth full of metal dental work. This detail -- that cilantro was a means to treat metal poisoning -- was an Aha! moment for me and my lunches at Chipotle being so helpful finally seemed to make sense.
At first, I just had reason to believe that I had metal poisoning, not that CF promotes metal poisoning. The idea that people with CF are at greater than normal risk for metal poisoning came later.
This is why I am a big believer in starting a journal if you have any kind of health issue. Life is chemistry and there are a lot of complex throughputs involved in health outcomes and most people go through life adding inputs to their health and having absolutely no idea what they do.
Whatever your health issue is, everything you eat, drink, breath and touch impacts it for better or worse. You need to find some thread to pull to begin unraveling it.
Finding a thread to pull is not just about what you do physically. It's very much about altering your thinking to begin recognizing which inputs are significant and WHY.
Medicine isn't anywhere NEAR as scientific as people seem to think it is.
Malaria is Latin for bad air. They thought you got sick from the bad air in the swamps. It was only later that we learned that it is a parasitic infection transmitted by the mosquitoes found in swampy environments.
If you think the state of medicine has improved over that, think again. Gulf War Syndrome literally just means "Some of our soldiers who fought in the Gulf War are sick and we have absolutely no idea why."
Last I checked, they now differentiate between three entirely different profiles of Gulf War Syndrome -- three different sets of symptoms -- and still have no clear idea what actually causes them, but it suggests it's three different causes at least.
This is a big problem. If you don't know the cause, how do you successfully treat it?
You can treat things without knowing the cause. You treat symptomatically and this sometimes actually improves things.
In other words, if you are sick and don't know why, you can treat the symptoms, like fever or nausea. Sometimes you can to some degree symptom manage your way to a better place.
But you won't fully solve it if you don't somewhere along the way develop an understanding of the root causes.
My process was I observed what was happening in my life and if something seemed to help, I began reading up on that thing and trying to understand WHY it might be helping. Mental models of what was going on with my body eventually grew out of that.
The other thing I did was I had kind of a mental box where I tossed tidbits of info I had reason to believe had a high degree of confidence were true. At first, I just tossed things in the box and later began to wonder at how they interelated.
Sort of like building a mathematical equation by saying "Oh, we have X. Oh and we have Y." and later wondering "Should there be a plus sign between them? A minus sign? A times sign? How are they related here?"
High degree of confidence meant that the scientific study in question had to look solid to me. Far too many studies are garbage and people run around (metaphorically) asking "How much does it WEIGH?" and then using a tape measure to try to infer that instead of actually weighing it on a scale.
It also had to make sense from the perspective of firsthand experience of my own body. When doctors and studies told me "CF works thus and such" and my own body was like "NUH UH. I don't work that way AT ALL!" I listened to my body and took a jaundiced eye to their claims.
So I just put my blinders on to an awful lot of information out there that didn't meet either of those tests. I paid little attention to things that I couldn't find BOTH of those pieces for.
If it met both tests, it went in my box of mental tidbits and if it didn't I was just kind of like "La la la not listening." Because I was too sick to be interacting with nonsense that I didn't understand and that might well just be wrong and stupid.
I also listened a lot to the experiences of other patients. For me, that was a more valuable source of info than studies.
It makes me crazy that patient experience gets so frequently dismissed as anecdotal. If you have enough anecdotes, now you have data to some degree.
That's how I operated for a lot of years before having any kind of solid mental models of complex process. And it worked. It got me better and eventually led to those mental models so I could further improve on my process.
I didn't start out with some kind of mental model for my condition or whatever. Instead, I stumbled across things that seemed to make a difference and then tried to figure out what might be pertinent. WHY did this thing seem to do something beneficial?
One of my early experiences is that I began eating lunch at Chipotle and it seemed to really help. So I started with reading up on what was in the food there.
I learned that it is all organic and I looked up some of the spices and found that many of them had medicinal uses pertinent to the symptoms I had. They could be used to help with gut or sinus issues, generally speaking.
But that didn't quite seem to fully explain it. For wholly unrelated reasons, I happened to join a Yahoo Group called Autism-Mercury and it was there that I learned that cilantro can be used to do chelation -- in other words to treat for metal poisoning.
I have a long history of dental problems dating back to early childhood and still have a mouth full of metal dental work. This detail -- that cilantro was a means to treat metal poisoning -- was an Aha! moment for me and my lunches at Chipotle being so helpful finally seemed to make sense.
At first, I just had reason to believe that I had metal poisoning, not that CF promotes metal poisoning. The idea that people with CF are at greater than normal risk for metal poisoning came later.
This is why I am a big believer in starting a journal if you have any kind of health issue. Life is chemistry and there are a lot of complex throughputs involved in health outcomes and most people go through life adding inputs to their health and having absolutely no idea what they do.
Whatever your health issue is, everything you eat, drink, breath and touch impacts it for better or worse. You need to find some thread to pull to begin unraveling it.
Finding a thread to pull is not just about what you do physically. It's very much about altering your thinking to begin recognizing which inputs are significant and WHY.
Medicine isn't anywhere NEAR as scientific as people seem to think it is.
Malaria is Latin for bad air. They thought you got sick from the bad air in the swamps. It was only later that we learned that it is a parasitic infection transmitted by the mosquitoes found in swampy environments.
If you think the state of medicine has improved over that, think again. Gulf War Syndrome literally just means "Some of our soldiers who fought in the Gulf War are sick and we have absolutely no idea why."
Last I checked, they now differentiate between three entirely different profiles of Gulf War Syndrome -- three different sets of symptoms -- and still have no clear idea what actually causes them, but it suggests it's three different causes at least.
This is a big problem. If you don't know the cause, how do you successfully treat it?
You can treat things without knowing the cause. You treat symptomatically and this sometimes actually improves things.
In other words, if you are sick and don't know why, you can treat the symptoms, like fever or nausea. Sometimes you can to some degree symptom manage your way to a better place.
But you won't fully solve it if you don't somewhere along the way develop an understanding of the root causes.
My process was I observed what was happening in my life and if something seemed to help, I began reading up on that thing and trying to understand WHY it might be helping. Mental models of what was going on with my body eventually grew out of that.
The other thing I did was I had kind of a mental box where I tossed tidbits of info I had reason to believe had a high degree of confidence were true. At first, I just tossed things in the box and later began to wonder at how they interelated.
Sort of like building a mathematical equation by saying "Oh, we have X. Oh and we have Y." and later wondering "Should there be a plus sign between them? A minus sign? A times sign? How are they related here?"
High degree of confidence meant that the scientific study in question had to look solid to me. Far too many studies are garbage and people run around (metaphorically) asking "How much does it WEIGH?" and then using a tape measure to try to infer that instead of actually weighing it on a scale.
It also had to make sense from the perspective of firsthand experience of my own body. When doctors and studies told me "CF works thus and such" and my own body was like "NUH UH. I don't work that way AT ALL!" I listened to my body and took a jaundiced eye to their claims.
So I just put my blinders on to an awful lot of information out there that didn't meet either of those tests. I paid little attention to things that I couldn't find BOTH of those pieces for.
If it met both tests, it went in my box of mental tidbits and if it didn't I was just kind of like "La la la not listening." Because I was too sick to be interacting with nonsense that I didn't understand and that might well just be wrong and stupid.
I also listened a lot to the experiences of other patients. For me, that was a more valuable source of info than studies.
It makes me crazy that patient experience gets so frequently dismissed as anecdotal. If you have enough anecdotes, now you have data to some degree.
That's how I operated for a lot of years before having any kind of solid mental models of complex process. And it worked. It got me better and eventually led to those mental models so I could further improve on my process.
