I Am Not a Scientist
26/04/10 07:50
It pains me to have to admit this, after studying this disease for fourteen years, but it is nothing more or less than the truth. I am not a scientist. I have no training at all in the field. Never even been to a science fair.
But I’m a voracious reader, and I’m a damned good guesser. And, once I’ve made a good guess, I can either find it borne out already, in the literature (which means that I’m catching up to mainstream science in one place), or others test it in the lab, after I write about it, and my guess was on the money (which means that I’m ahead of the curve). Or, there’s a third possibility, where I’m totally wrong. I learn from those situations. I make the mistake count, instead of ignoring it.
It’s pitiful, really, sometimes I find myself having “eureka moments” about things that scientists back in the 60’s have already figured out; stuff that is common knowledge, you know? In other words, I’m learning things the hard way. But it’s the only way I know of doing things. I can’t go back to school, at this point in my life, and learn all of these things (although, sometimes, I’m sorely tempted to do so), so I just read everything, old and new.
Have you ever had a “eureka moment’? That’s one thing that studying science does for you. It gives you thrills. It really does. When something clicks into place, and you can suddenly see things that you haven’t seen before, that someone before you saw, or that no one yet sees, you get that eureka moment. It’s like drinking twenty cups of coffee in ten minutes. It must be what runners get, when they feel euphoric, after running for a while. I’m totally hooked on it.
But I’m not a scientist. Remember that.
In this world that I am in, I am an outsider. I am not apprised of the consensual order of things. That is both a plus and a negative. I remember how long it took me to get it into my thick head that metallothionein could not be transported by the CFTR protein. And, to understand cyclo-adenosinemonophosphate’s role in the whole scheme of things (which, incidentally, CF scientists have known about for years, and I’ve only figured out sometime in the last three years). Pitiful.
But, it cuts both ways. Because I am not apprised of the consensual order of things, I am not boxed in to studying areas of this disease that are not directly related to stopping it. I don’t have to study PA. That’s not my life’s work. I don’t have to study zinc homeostasis, past the point that I’ve already studied it. I don’t need that job, because I’ve already got one that supplies for my basic needs. If I’m interested in any of the anions that are transported by the CFTR and the MRP protein, or if I’m interested in the proteins, themselves, I can pursue that interest. I am free, you see? And scientists are constrained by politics, by the pursuit of funds to carry on their research, and any number of other reins on their natural curiosity. I am not.
And neither are you. What is important here, given that particular situation, is the internet, and how the internet makes available and accessible the information that a patient might use to change their own lives; to buffer the ravages of a disease like cystic fibrosis, or even to ameliorate the ravages of the disease.
When people have that power over their own lives, and the way that they live them, they grab that power. They do so because they know, intuitively, that they are the only ones who will suffer if they do not, and that the people that they heretofore had handed these reins of power, will not, cannot, suffer as they do.
So, I am not a scientist. Neither are you, my CF family. But the information that you need to control your lives, and the course of your disease, is there, at your fingertips.
Use it. Shrug off the old paradigms of dependency; the authoritarian view that only the select few can understand what your body is doing to you. You are living this disease. Because of the internet, the science, no matter what you might label those who seek to consume it, now belongs not only to the select few, but to all of us. I am not the first to embark on such a journey.
And I will not be the last.
But I’m a voracious reader, and I’m a damned good guesser. And, once I’ve made a good guess, I can either find it borne out already, in the literature (which means that I’m catching up to mainstream science in one place), or others test it in the lab, after I write about it, and my guess was on the money (which means that I’m ahead of the curve). Or, there’s a third possibility, where I’m totally wrong. I learn from those situations. I make the mistake count, instead of ignoring it.
It’s pitiful, really, sometimes I find myself having “eureka moments” about things that scientists back in the 60’s have already figured out; stuff that is common knowledge, you know? In other words, I’m learning things the hard way. But it’s the only way I know of doing things. I can’t go back to school, at this point in my life, and learn all of these things (although, sometimes, I’m sorely tempted to do so), so I just read everything, old and new.
Have you ever had a “eureka moment’? That’s one thing that studying science does for you. It gives you thrills. It really does. When something clicks into place, and you can suddenly see things that you haven’t seen before, that someone before you saw, or that no one yet sees, you get that eureka moment. It’s like drinking twenty cups of coffee in ten minutes. It must be what runners get, when they feel euphoric, after running for a while. I’m totally hooked on it.
But I’m not a scientist. Remember that.
In this world that I am in, I am an outsider. I am not apprised of the consensual order of things. That is both a plus and a negative. I remember how long it took me to get it into my thick head that metallothionein could not be transported by the CFTR protein. And, to understand cyclo-adenosinemonophosphate’s role in the whole scheme of things (which, incidentally, CF scientists have known about for years, and I’ve only figured out sometime in the last three years). Pitiful.
But, it cuts both ways. Because I am not apprised of the consensual order of things, I am not boxed in to studying areas of this disease that are not directly related to stopping it. I don’t have to study PA. That’s not my life’s work. I don’t have to study zinc homeostasis, past the point that I’ve already studied it. I don’t need that job, because I’ve already got one that supplies for my basic needs. If I’m interested in any of the anions that are transported by the CFTR and the MRP protein, or if I’m interested in the proteins, themselves, I can pursue that interest. I am free, you see? And scientists are constrained by politics, by the pursuit of funds to carry on their research, and any number of other reins on their natural curiosity. I am not.
And neither are you. What is important here, given that particular situation, is the internet, and how the internet makes available and accessible the information that a patient might use to change their own lives; to buffer the ravages of a disease like cystic fibrosis, or even to ameliorate the ravages of the disease.
When people have that power over their own lives, and the way that they live them, they grab that power. They do so because they know, intuitively, that they are the only ones who will suffer if they do not, and that the people that they heretofore had handed these reins of power, will not, cannot, suffer as they do.
So, I am not a scientist. Neither are you, my CF family. But the information that you need to control your lives, and the course of your disease, is there, at your fingertips.
Use it. Shrug off the old paradigms of dependency; the authoritarian view that only the select few can understand what your body is doing to you. You are living this disease. Because of the internet, the science, no matter what you might label those who seek to consume it, now belongs not only to the select few, but to all of us. I am not the first to embark on such a journey.
And I will not be the last.