This is a big experiment that I am doing on myself. The TL:DR version is that it is a combination art project and therapy. I have ADHD and Tourette Syndrome and I am going to build a computational model of the brain on the pages of this blog. What I mean by that is that I am going to look up all the little tiny pieces that science has discovered so far, and I am going model them and put them together in a way that makes their function sensible by sight. Then I am going to use that model to make connections between what science has discovered about the brain, and tie it to our minds. I want to translate structure and function to experience, and I want to do a way that works like a “Human Brain for Dummies.” That will apply to all of us.
Why am I going to do this? at least two reasons that I can figure out. I want understand myself and I want to do it in a way that will help other folks understand the brain too. I have a belief that I have a mutation that lets me deal with conceptual information differently than “most people” (whatever that means, that’s the point). For the justification about why this is not just the same average, arrogant statement that you have read everyone else, keep reading. Or not. What is important is that I am really doing science here because the first and most important part is that this is all based on scientific consensus, and I am doing this work by looking of information that would prove me wrong at every point. Most people don’t realize that science is done by having an idea, and then trying to prove it wrong by looking for something that would by true if you are right.
I, like everyone else in the world was a kid that dreamed of doing things he loved for a living. For me it was science. There was nothing really complicated about it, I just wanted to know about things. I wanted to know WHY in that big empty sense that can be compared to starvation. Do you know what I did when I was at my youngest and in school and it was time to play? I went to the little neglected corners of the school grounds. I know that I’m not the only kid to have done that, but everyone else was “playing” or trying not to be played. I know that last bit is really general, but again brains are the whole point of this blog and I’m sure you can fill in those quotes above with your own experiences. While everyone else teased, bullied, hid, threw, talked, sang… I was looking. Seriously! I think I’m the worlds most accomplished lurker, all I did was look at grass, insects, animals rocks, trees, and wonder about them. I had friends, but with few exceptions they are a little blurry because I just liked thinking about everything, in every way that I could. What are those little tiny green spheres on tiny stalks arranged in a patterned array (lacewing eggs). Is there anything I can do to help that baby bird? (mostly no 😦 … ) What is that cat looking at? What is inside of my toys? That has never stopped.
That last bit about the birds and animals led me to decide to be a veterinarian, and than a scientist, and I DID! Earlier than most in fact. As an undergrad I had images and acknowledgements and my name in places that make me intensely proud. I spent a little longer in that undergrad than most, but it was because I wanted to make sure that I really understood, not just memorized for a test, really knew the material I learned in the same way that a hunter would dismantle and clean a gun, or a tech nerd builds his own computer. I wanted to know it functionally, in a way that would let me use it like a tool. With that plan I typically covered 12-14 credit hours a semester so that I would always do well.
Shortly after getting into college I stopped working at “regular” jobs as quickly as I could and spent the rest of the time working in labs doing real science. I spent 5 years working in labs as an undergraduate, 2 years as a technician, and 5 years working as a graduate student and they were some of the best days of my life. But that whole time I was haunted and I did not even know it. Like every one of you I was followed by a demon, a thing that haunted me like a mythological creature from the fuzzy times of childhood, and left its mark. I still had ADHD.
Four letterwords. Stupid little letterwords that flutter all around the world like shallow little butterflies that we toss at one another in person and around corners. We all have them in one form or another. Mine was given to me when I was in Elementary School (very early school, age 6-12) and like every one of you I had no idea what it really meant. But that word stayed in the back of my head and I kept going forward in time. I sucked at school until sixth grade, which I asked (that’s right) to do again. I tried the medication a the time (Ritalin), but my parents took me off of it because it made me pick at myself until I bled (that was a sign of things to come). Somewhere in the following two years, something changed. I am still trying to figure out what changed (another point of this blog) but I found a solution to my ADHD. Over that two year period I fixed what I was, got on the honor roll, and stayed there.
But I would not be here if it all worked out. The warning signs were there, but I had discovered little tricks to use in life that fixed most of them. Eventually was not enough however, and with the downturn in the economy, I had to admit to myself that I was less efficient than other graduate students, and even though I could do really good work, I was not going to be competitive in the world of science. I was in my own small way like all those little creatures that natural selection screened out, and it hurt. But, now I am not so sure the story is over. When I was getting the official stamp from the neurologist who reunited me with my little ADHD letterword, he gave me a new one, Tourette Syndrome…
What does that mean!?!?!?
I want to find out, but I’m not the only one in a place like this. So in that vein I want this blog to be many things to many people.
First, it’s a way for a person with Tourette Syndrome and ADHD to find out what that means for himself, and hopefully do that in a way that is interesting, fun, and might even help other people. Sure the science can be neat and yeah it’s great that I can look up lots of stuff, but there are so many ways that I can do that. Really, the most respectable way of trying to find out if you are a mutant that is good with words is to invite everyone in and tell them to make themselves at home. Critics can make you better 🙂
Yes you read that right, words. The fact that Tourette Syndrome has anything at all to do with words is why I am even doing this as project, and if you want to know what that means you need to read the rest of this. It’s a really weird story.
For Random Folks
So like everything that everyone else does it’s primarily about me, but that’s because it can’t be helped. So this blog is also an attempt to help me to better learn to make this project all about everyone else too. What’s the point of all this brain research if I’m the only one that benefits, especially if I am right about being able to work with conceptual information differently? So this is also going to be about making brain research accessible to everyone else. If I do this right, I might just have a set of tools here that you can use. If not you can always ask if I know something. I am honestly trying to develop the skills to quickly break down the information on a scientific subject, write up a summary that everyone can understand, and share it with everyone.
Seriously? How many people with ADHD make it as far as I did in science anyway? Every time we hear about ADHD it’s in the context of kids with problems in school. They deserve the priority too! I work with these kids everyday (I’m a substitute teacher) and they NEED an educational solution and in this economy they are being left behind. I don’t need pity or help which is why I’m doing this myself, with the except of the professors that I am asking to make sure I am not wrong about anything. Here is an assumption I have no problem making; the overwhelming majority of individuals with ADHD are not in scientific fields. In fact while I think I am pretty good with research, I can’t find any information on the distribution of individuals with ADHD and employment. How might Tourettes Syndrome be connected to this? TS is associated with cognitive enhancements! (more below) Do I have any of them? How did they help me get by in my, sadly former career? Can this be turned into ADHD therapy NOW?! How rare is my brain and what can this kind of question say about all of us?
To that end here are some things I am going to do for you the reader:
- When I discover them I will list the coping strategies for ADHD that I have come up with over the years. Seriously, these got me through graduate school, and earned me two majors, one minor, and a masters. I’m am only just recently learning to articulate what they are so if you have ADHD and want to know something, feel free to ask. Maybe asking me if I learned to deal with something will jar the memories loose?
- I am willing to talk about things other than ADHD and Tourette Syndrome. However please understand that while I think I am really good at translating scientific research for regular folks, all scientific research is by it’s nature meant to be broadly applied! You are a person, not a general range of characteristics so what you will need is an expert. I will be very hesitant to recommend anything to anybody in terms of treatment. My intent is for you to understand what you are at a similar level to the experts. However, I basically know enough to be dangerous because I don’t have the depth of experience that daily exposure to a career brings (to say nothing about your specific case as your specialist would understand it).
- I will have lots of other interesting, weird, funny, and disturbing/enraging posts about anything brain/mind related. Since this inevitably brings us to politics, religion, philosophy, sociology, etc, I will not hesitate to chase the opportunity. I am nearly impossible to offend so this could get, interesting…
For Sciency Types and other professionals
To professional scientists this blog might be fun, and annoying. Let me be blunt because honesty is the best policy (No really! It’s not just a stupid saying!) I have a bachelors in Microbiology, a bachelors in Molecular and Cellular Biology, and a Masters in Molecular and Cellular Biology. Normally this means that I failed out of a program and got a boobie prize because lets face it, we wanted the big science dream, the nice lab, the respect, and most importantly the ability to study whatever you wanted. It’s fair to think that I might have some rage at the word due to my circumstances. But I try to recognize it when that happenes and the ADHD may have only affected my attention at tasks, not quality of thoughts. In my case I chose to leave because I realized that the extra effort that I had to put in because of ADHD would have made me a miserable scientist, and a bad person. I saw the writing on the wall and left due to attention issues. I was just fortunate that I discovered another field that I was good at that I could use my education for, and I honestly enjoy it most of the time.
It’s not that I could not do the science work, it’s just that something like ADHD (at the time I did not know I had Tourettes) is not just a label. It’s a filter through which your life is expressed. You know that feeling you get when you have an itch that is like a pin stab? Or that urge to sneeze at a socially bad moment? Well ADHD is your brain physically rewarding you for becoming bored and directing your attention to something else, on a regular basis, like after five seconds or so if you have a “moderate case” like me. It SUCKS. So that gets expressed as forgetting a control, mislabeling a tube, basically absent-mindedly doing really stupid things because you did not realize that your attention was elsewhere, and you did not even realize it until you disappoint the professor, again. The academic world has no sympathy for my type of person. Too often you are simply told that you are making excuses.
I know that sounds like stuff that “normal folks” go through on a regular basis. But consider this;
- ADHD is the single most diagnosed mental issue among children, PERIOD. It exists in every culture, in similar proportions between the US and other developed countries. (It’s suspected that the rate comparisons with non-western countries are flawed due to flawed study design)…
- Many many things in the brain exists on a spectrum, not a black and white “On/OFF”, (yet humans want everything in black and white terms as a matter of normal behavior). So it makes sense that attention abilities among “normal” people would also be on a spectrum. ADHD is when you earn D’s and F’s on attention and it’s really not your fault. But you have to deal with it anyway…
- Now apply the first two points to human history and Today’s world as a filter…
Yeah, having ADHD sucks when you are a scientist, legitimately love the work, but suck just enough to have to leave at it because the deck is stacked against you in terms of how the whole science industry is set up. When the economy goes south, grant money dries up. I love the human enterprise of science too much to do something like make an Americans with Disabilities Act claim that would mostly piss people off who are already stressed as it is. So I left to do something that I was better at. But then the Tourettes happened…
For People I piss off. Maybe on purpose, maybe on accident. Also people who are very confused about the way I write and why I even want to do this.
This is where things might get, complicated. You see I only discovered that I had Tourette Syndrome (TS) less than a year before I left graduate school. At first it was just information. Like “Oh, that guy is from Montreal”. I had no idea what that means other than the public perception of people who can’t stop cussing. So about nine months ago I finally started taking my Elite Research Skills™ to the subject of Tourette syndrome to figure out what it means to be a twitchy kid my whole life, and how that might have contributed to me failing at being a scientist. What I discovered, shocked me to my core, and changed me forever. It changed me in ways that I am still trying to figure out. The way it changed me can only be described as “Knowing what you are can tell you how you should live your life”. It was impossible for me to read about what I am, with my background knowledge, and not let it transform me. I am the object of the subjective experience of others, and I know what they are talking about. The problem is that every time I read about TS or ADHD I have very different interpretations of some of the information, or I “know” what they are discussing on a real world experience level. I keep coming up with hypotheses about the implications of what I read like some kind of OCD that has even had people close to me worried about my brain in other ways. Fortunately I know how to go about learning to have a voice of experience, and this blog is meant to facilitate that. The internet is the ultimate peer review, even if the quality varies l 😉
It was a simple article that started it all really. The medical literature gave me no clue at all other than telling me that I had a lot of ticks, and that there was no cure, and medicine was not very effective. On top of that the treatments for the Tourettes did nothing for the ADHD and that medication made the tics WORSE (I wanted the attention span to improve more than I wanted to be tic-less). But then there was this article that told me that it was not all bad, in fact it might have even helped me in school. Cognitive control? Tourette Syndrome? With all the twitching and cussing? How is that possible? So I read more, and more, and more, and I basically learned that there was real reason to think that somehow TS enabled me to compensate for the ADHD and get really far in science. How it did that is what I want know. The research in regular words basically says this about children with TS;
- They have extra control over at least some mental functions (motor, language structure…) that operate in the range of 1-2 seconds, as compared to 0.5 to 1 seconds (which is “normal”). This is thought to be related to the effort to suppress our tics. They call this “increased timing control”.
- These improved functions include eye-switching tasks, tool identification, forcing moments of mental conflict (“task switching”, basically we do not have a moment of pause before switching to a new task), most interesting to me, rule governed grammatical aspects to language. Specifically rule-based parts of grammatical language, which it turns out is connected to the basal ganglia, a structure that is disorganized, but more functionally interconnected in individuals with TS. We have two language systems as human beings. One that makes rules, and one that makes associations. The nice thing about rules is that they can be based on real things that produce results. Associations on the other hand, are more prone to errors. This is where the religious and emotionally-political folks might become uncomfortable around here. While I will try very hard to be polite and fair, I have opinions that will rustle jimmies so much that their jimmies descendents will tell legends of that fateful day when…
- The brain changes associated with TS are very real. With “TS only” (no OCD/ADHD) individuals showing “…widespread differences in the white matter (WM) microstructure of the TS brain that include alterations in the corpus callosum and forceps minor (FM) WM that significantly predict tic severity in TS. Most importantly, we show that task performance for the TS group (but not for controls) is strongly predicted by the WM microstructure of the FM pathways that lead to the prefrontal cortex and by the functional magnetic resonance imaging blood oxygen level-dependent response in prefrontal areas connected by these tracts.” In normal human that means that there are a lot of changes to the way that cells are wired in the brain having to do bridges that connect the two big hemispheres. So the way that the left and right brains talk is altered.
- ADHD will affect this, hell DID effect me. Exactly how is something that I am still figuring out.
How might this manifest in the real world in a way that might help me, or maybe already helped me? Well beyond the little “tricks” that I developed to help with the ADHD (I’ll make a separate section for those eventually), there is one more interesting thing that might shed some light on me and what might be possible with me and TS.
It’s represented by an interesting little bit of history involving a guy who lived in England from 1709 to 1784, Dr. Samuel Johnson. This was a person, who like me had Tourette Syndrome. Dr. Johnson was “… a poet, essayist, moralist, literary critic, biographer, editor and lexicographer.” His early life was troubled, but he displayed very high literary skill with Latin, was accomplished at translations and poems, and spent time tutoring. Later he was a bit of a celebrity because of the unique qualities in his writing. Qualities that apparently have influenced our language today.
The best example of his ability is represented by “A Dictionary of the English Language” which is considered one of the most influential dictionaries in the history of the English language. This dictionary incorporated innovative ways of presenting the information that have lasted until today. These innovations had the effect of demonstrating the use of the words as they actually were used, rather than being “… poorly organized and poorly researched glossaries of “hard words”: words that were technical, foreign, obscure or antiquated.” So Dr. Johnson had a way of pulling out the conceptual information in the English language, and presenting it to the reader as it really was. What makes this even more amazing is that he did this over a nine-year period virtually unaided. Why is this impressive? A contemporary groups’ efforts to accomplish the same in French took 40 scholars 40 years. Somehow this guy commanded a control over conceptual information so fine that he used words like tools, and placed them in little drawers on pages for other people to use. If I have even a sliver of that ability, I have to know.
Can Tourettes give a weird ability that results in a more deep and complete understanding of conceptual information? If I am reading the scientific literature right, and interpreting Dr. Johnson’s achievements in light of that literature, well that is why I am doing this. This, is an attempt to understand the brain, and how it functions on a computational level, and to see if I can be the ultimate Instruction Manuel Writer in a sense that makes me want to capitalize it. I hope it’s worth while.