Today marks the end of the 2019 Tourette Syndrome Awareness Month. This post is probably going to be very introspective, and at times, hard on myself. Especially since I just watched like 23149 motivational speeches on YouTube.
I’ve relied on my smarts and a-little-above-average memory to succeed in high school. In high school, I didn’t need to work hard to achieve things and eventually attend my dream college. Brown was definitely harder because everyone was smart and capable, but I still managed to pull through and not work my butt off. Just to give you an idea, Brown’s grading system does not include pluses or minuses, so an A- gets rounded up to an A, and a B+ gets rounded down to a B. In my first organic chemistry class, I scored 601 points when 600 points was the grade cutoff for an A. Yes, I barely pulled through.
Now I’m in graduate school, pursuing a PhD in Neuroscience, and I was hit so hard by reality. Grad school does not center around passion; it requires a combination of passion and diligence/grit to succeed. I’m absolutely not used to this culture that demands hard work, and I’ve been struggling since I matriculated.
The truth is: I suck at working hard, and it’s something I’m still learning how to do. I was watching a motivational video on YouTube by a person named Eric Thomas, and one of the things he said really struck me. To paraphrase, Thomas said we always want guarantees made to us by other people, like 30-day money-back guarantees from stores. But we have never had the guts to make guarantees to ourselves. We’ve never demanded “money back” from ourselves when we fail, and we are not able to look in the mirror and say “You let you down,” and then demand an explanation from ourselves.
Thomas’s statement resonated with me because I have trouble looking in mirrors. All I see is an overweight boy who likes to blame everyone else for his own lack of commitment. I see someone who hasn’t yet developed the grit necessary to succeed in school and in life. I see a failure.
I genuinely want to do better and be better. I want to work hard and persevere. I want to live up to my fullest potential and then some. I do realize that Eric Thomas’s words sting, but it is precisely because of the pain that I know they’re true. I am also not expecting myself to pull a 180-degree turn overnight; change is slow, complicated, and effortful, which is why I am asking for encouragement as I work on improving myself physically and mentally. I don’t want people saying I’m fine just the way I am because I’ve made a commitment to bettering myself, and I would much prefer people being truthful than people trying to appease me.
I really hope you’ll help me out, and I look forward to a journey filled with self-improvement. I want to recognize a better person when I look into the mirror.
This is going to be a short and science-based entry. I’ll try my best to distill down the science to a level that (almost) everyone can comprehend!
When I applied to Emory for graduate studies, one of the school’s alluring features was its intensive commitment to research of neurodegenerative disease like Alzheimer’s or Parkinson’s. An entire floor full of professors’ offices and laboratories was dedicated specifically to the multi-pronged approach to understand these diseases better.
The term “neurodegeneration” refers to a multitude of conditions in which the patient suffers from continued loss of neurons (brain cells). Usually, our neurons stay put, even though they might make or break connections with other neurons. But in the case of a Parkinson’s patient, for example, the neurons are dying by the masses, leaving certain activities like walking and cognition very impaired.
I started my first laboratory rotation in the lab of Dr. Chad Hales, who is an expert on Alzheimer’s disease and frontotemporal dementia—basically, two important neurodegenerative ailments. We know that there is a certain pattern to Alzheimers. In cases of Alzheimer’s, there is an accumulation of this protein called A-beta, and when they clump together, they “stick” to each other and create major disruptions in the cell’s wellness. After the A-beta protein accumulates, another protein called tau joins the ride. Tau is a key component of the cell’s skeleton, and when too much tau and A-beta aggregate, brain cells start dying steadily.
So far, our model looks like this: A-beta accumulation —> tau accumulation —> pathology.
We have very limited knowledge of why and how the A-beta accumulation causes tau to clump together, too. We suspected that there might be other proteins involved in this cascade. Chad’s colleague and lab-neighbor is Dr. Nick Seyfried, who uses fancy techniques to determine which proteins have the highest probability of sticking together. The ultimate hope is to identify these vulnerable proteins and gather insights into the domino effect in order to provide better treatments.
My project with Chad was straightforward. I would use the data collected by Nick and formulate hypotheses about which proteins might aggregate in the brain and contribute to pathology. I used a method called immunohistochemistry to test my hypotheses. Immunohistochemistry is basically using chemical approaches and antibodies to label a specific protein within the cell— in this case, we were looking at cut-up post mortem human brains, and antibodies for four proteins that Chad and I agreed on. We found that none of the proteins we suspected was actually aggregating.
While it was a disappointment to have an experiment completely “fail", the experience taught me that an unsatisfactory observations usually lead to the greatest hypotheses. I’m no longer rotating in Chad’s lab, but I will definitely stop by once in awhile to catch up.
To better manage my tics and mood, I see a psychiatrist, a behavioral therapist, and a neurologist. The team shares notes with each other, and I’ve gained a lot of traction thanks to them. My anxiety has decreased, and I’m able to relate differently to my obsessive thoughts, realizing they are not beneficial. On the other hand, my neurologist doesn’t seem to see much of an improvement in the tics themselves, commenting that they’re still very severe and discussing the option of brain surgery (I’ll probably write about the surgery in a later post). He pointed out that throughout his career, he’s seen several cases like mine, in which the anxiety decreases but the severity of the tics doesn’t follow along like it should. Then, my neurologist, Dr. Juncos, revealed that those patients like me all ended up having ASD.
ASD stands for autism spectrum disorder, which is a cornucopia of related disorders ranging from mild to severe. For example, ASD includes Asperger’s and of course autism. The symptoms often include, but are not limited to: social deficits, sensory issues, and stereotyped behavior. When Dr. Juncos first mentioned it, I went into a state of denial, arguing that none of my friends and mentors ever thought I was on the spectrum. But then I thought about it some more, and I remembered that my maternal cousin has severe autism. Since I share 12.5% of my DNA with my cousin, is it plausible that I might have inherited genes that predisposed me to ASD, or downright caused ASD?
It makes some sense if you know me and if you think about it. Sometimes I mess up reading social cues, and I almost always prefer to be alone than with a group of people. I honestly didn’t make many friends in college until I started being a teaching assistant and gained rapport with my students. And my tics could be the example of the stereotyped behavior so often associated with ASD. Finally, although I’ve told no one this before, I am very sensitive to loud sounds such as fireworks, popping balloons, or even audio in a movie.
There is no way to know for sure, and this uncertainty is an emergent property of the Diagnostic Statistical Manual (DSM), a really thick book that outlines how to diagnose certain disorders. The problem is that there is no biomarker available for physicians to accurately diagnose a patient; the physician needs to rely only on behavioral observations and an educated guess. For these disorders, no one can say, “Well the patient’s levels of substance X are below the threshold of Y, therefore patient must have disorder Z. Moreover, psychiatric disorders rarely stand alone—they tend to bleed into each other, which makes an accurate diagnosis much more difficult.
Having ASD wouldn’t be the end of the world. In fact, it might just open more avenues for treatment and for my doctors to advocate for me in my situation with Emory. A diagnosis of ASD could explain many things, from my tics to my sensitivity to loud sounds. I would appreciate your opinions on whether a diagnosis of ASD would make sense, given what you know about me. I promise I won’t feel offended or take it negatively, and you’re welcome to use a fake name when you leave a comment!
Tourette Syndrome Awareness Month started on May 15, and it runs until June 15; don’t ask me why they decided to start and end in the middle of the month! As part of my advocacy efforts, I thought it would be interesting to share my recent perspectives on my own illness. As with other posts, I will try my best to fill this post with positivity and optimism, despite the fact that having Tourette’s absolutely sucks and has caused me so much grief over the 20-year span.
I will start off with a basic outline of my story with Tourette Syndrome (TS) for people who haven’t met me (because if you meet me, my tics are very obvious). I have what my doctors classify as “severe” TS, and my tics are complex, ranging from vocal outbursts to cursing to banging my knees against the table until they bleed. My tics got significantly more severe and complex in college, perhaps because of the stress, and they got entangled with elements of obsessive-compulsive disorder (OCD). Sometimes I have to do a tic until it “feels just right” in my mind. As an aside, I want to draw your attention to the diagram that the Tourette Association of America (TAA) has put out. (Click to enlarge!) The point is that very few people just have TS, and TS often comes with a slew of other comorbidities that complicate treatment and compromise quality of life.
When I was in high school, I didn’t have any tics that caused me to swear, a symptom called coprolalia (Greek for “shit-talk”). I was lucky because having swearing tics could have gotten me booted. I was also lucky because my teachers were compassionate and because I was academically gifted, so many teachers thought it would be a waste of intellect if I were sent to special education or another school. For these reasons, I viewed my TS as more of a blessing than a curse because I had the chance to advocate for myself and to spread messages of hope throughout the school. In college, however, I gradually began to change my perspective as managing my tics became harder and more misunderstandings arose. My access to care was also very limited at Brown University; according to the TAA, at the time there were no known neurologists in the greater Providence area who specialized in treating TS. This makes sense, though. Movement disorder physicians often prefer to specialize in disorders that make money, like Parkinson’s and ALS. Treating Tourette’s just doesn’t rake in as much cash.
Now, I’m a graduate student at Emory down in Atlanta, GA, and I’m fortunate to have an extended team comprising a neurologist, a psychiatrist, and a behavioral therapist all dedicated to treating my TS and its comorbidities. Emory is the largest employer of Atlanta (beating even McDonald’s), and the University owns an entire building called the “Emory Brain Health Center.” After a few years of almost weekly therapy and monthly doctor’s visits, I have gained some control over my tics, and I’ve acquired the ability to relate to my obsessive thoughts differently so that they don’t dominate my behavior. This improved control comes at a price, though: I’ve now begun to hate my TS. It makes sense if you think about it. I retrained my brain to realize that my obsessive thoughts are useless and my tics serve no purpose, and I also practiced not engaging in the tics when urges arise. As I got better at this, naturally I thought to myself, “Why do I even have tics in the first place?” I began trying to suppress every tic I could, to a point where I started having tic “rebounds,” increased tic activity after periods of suppression. I’m currently working with my therapist on how to manage this bitterness.
I will probably write another TS-related post before June 15 because I’ve rambled on for too long already. But I wanted to share some tips you can keep in mind about TS and people who (might) have TS. I’ll be happy if this affects just one person. Some of these apply to other medical conditions as well:
Much love to everyone, and thank you for reading!
I would be lying to you if I said I have no trouble being productive. I have a lot of trouble, and most of it revolves around getting started on a task. I’ve been watching YouTube videos, reading online articles, and consulting friends on what motivation feels like and how i might be able to apply it to my own life. But recently I discovered that I can’t use other people’s strategies because they’re just that: other people’s. I need to find the strategy that works for me, and I’m still searching.
There’s a song lyric from “Wanksta” by 50 Cent that has stuck with me since the beginning of college. In the second verse, 50 Cent raps: “Damn homie / In high school you was the man, homie / What the f*** happened to you?” I see a lot of myself in this quote. In high school, I worked so diligently and had no trouble starting assignments, whether they were trivial or important. After high school, however, I began having a lot more trouble being productive, and I barely made it through college, evidenced by my mediocre grades and lack of achievements. In high school, many of my teachers believed that I was the most capable person in my grade, but I feel like I’ve let them down by being unproductive and, quite frankly, lazy.
The dilemma is this: I wholeheartedly believe that success results mainly from hard work, yet I can’t seem to put in the work necessary or the work I want to get done. Maybe it’s because I’m lazy, and maybe it’s also because I want to do so many things that I become overwhelmed and do none of those things. There are so many things that interest me, and I want to find the time to do all of them. In fact, I did a rough calculation of the time I want to spend on the tasks I want to do, and I found that I need 26-hour days and zero sleep if I wanted to get everything done. Obviously this is impossible, which might be why my brain says “screw it” and tells me not to even try. I think a healthier approach is to be more realistic about my goals and prioritize them, but I want to do so much that I feel inadequate before I even start a task.
My therapist and I came to the conclusion that I adopt an “all-or-nothing” mindset—I might be a Sith because I deal in absolutes! I either have to do everything, or I do nothing. I want to embrace a healthier way of thinking that allows me to get some stuff done without feeling guilty about it. I admit that I was not successful in committing to eating out twice a week in the last blog post, but I feel more confident in the goal I’m about to set. For this week (Tuesday, May 7 - Tuesday, May 14), I will practice self-compassion and be willing to feel uncomfortable if I don’t get everything done. It seems like a vague goal, but it’s a start.
Hi everyone! If you stumbled onto this site, it’s probably because I peer pressured you into checking out my blog (oops). Nevertheless, thank you for being here and for showing at least modest amounts of interest in my life. I actually spent weeks thinking about what I should write for my first entry, and inspiration has just hit me. But before we get to the main points, I think it’s important to see them in the context of my experiences.
I struggle with issues of inadequacy and lack of motivation, which make a pretty unfortunate pairing. Despite my best intentions, my body never seems to perform the movements that my brain relays to my muscles. This isn’t even because of the Tourette’s; it applies to my voluntary movements, too. Sprinkle in a dose of imposter syndrome, and you’ve got a veritable incessant monologue that tells you to never try because you’re just going to fail. However, I think part of my insecurities are founded. As a child, I was always praised for being “brilliant” and almost never for working hard. I gave my all into trying to suppress the tics in front of my father, who still believes that I have tics because I “don’t want to control them.” I’m also on medications that block the release of dopamine, a chemical in the brain that is responsible for reward but also the execution of movement. My former neurologist in Rhode Island classified my lack of motivation as “akinetic depression,” which is just fancy jargon for not wanting to move. These are all factors that probably contributed to my maelstrom of insecurities I face every day.
My current neurologist, Dr. Jorge Juncos, is an expert on Tourette Syndrome (TS), and he’s the only physician in the greater Atlanta area who sees adults with TS. He put me on a medication called olanzapine (Zyprexa). I’m tolerating it well, except for one huge drawback: it has made me gain so much weight. The real kicker is that olanzapine increases your weight physiologically, which means that it doesn’t make you fat by just increasing your appetite—it acts on bodily organs to tell them to store more fat. Dr. Juncos told me that during the clinical trials for olanzapine, it was impossible to blind the researchers to the study because the group of patients on olanzapine were noticeably gaining weight and flocking to the desserts table!
I could easily blame my weight gain on olanzapine. I could easily say that I’m 185 pounds and my BMI is closer to “obese” than “overweight” because the drug is making me overweight. But I was thinking about this for most of the day today, and I remembered a concept from Mark Manson’s book “The Subtle Art of Not Giving a F*ck.” Manson argues that things might not be your fault, but if they affect you, they are still your responsibility. I took this lesson to mean that I always have the choice of either putting myself on autopilot or grabbing life by the reins and being proactive. The point of this blog entry? I’ve decided to commit doing the latter, and I need your help.
Currently, I weigh 185 pounds, and most of it is pure fat. I don’t exercise, and my resting heart rate is 96 beats per minute because my heart is out of shape as well. Realistically, I don’t think I’m going to get rid of all the fat through exercise, nor do I expect to gain much muscle, but my goal is simply to try my best. I don’t have a target weight, but I do have concrete goals for the next four weeks. I’m trying to be a better person, to learn to work hard, to stay committed to all of my activities. I am asking you to keep me accountable.
For the first week, from Friday Apr 19 to Friday Apr 26, I will commit to eating out only twice this week. You can keep me accountable by messaging me, texting me, or commenting on this post! Thank you for being on this transformative journey with me as I strive to be better. From here, we go forward.