How games helped me deal with Tourette's

Features
4 months ago by Mike Joffe

A widely misunderstood condition, Tourette Syndrome responds surprisingly well to therapies that involve videogames. Here's one person's experience.

I don't know if anyone actually remembers events in flashback-style movies playing in their head, but I know for sure that I don't. I remember in random images, linked together as if a first year Sequential Art major decided to do their midterm drunk. With that going on in my head, it's not easy to remember exactly when my body became alien. At some point I was just different than I had been before, and I wouldn't recognize how different until long after it had become my new reality.

Everyone has heard of Tourette syndrome, but few people know what it actually is. Tourette syndrome is a neuropsychological disorder that tends to pop up in childhood and get continually worse until adulthood, when it eases off a bit. It involves uncontrollable tics, though not always expressed through corpolalia, or the infamous barrage of F-bombs most people have seen in pop media. The most common expressions are eye blinks and throat clearing. Most of my own tics were focused in my shoulders and neck, causing my head to whip around and freak out anyone standing behind me.

South Park's 11th season episode 'Tourette's Children' offered one of the more nuanced portrayals of Tourette's in popular media (still not much of an endorsement). South Park's 11th season episode 'Tourette's Children' remains one of the more nuanced portrayals of Tourette's in popular media (which isn't saying much).

When I was dealing with the worst tics, one therapist I was seeing described the relationship between Tourette's, ADHD and OCD like this: ADHD is your brain sending out "relax signals" when you want to focus, OCD is your brain sending out "focus signals" when you want to relax, and Tourette's is your brain having random "record skips" while doing either. Now, that is obviously extremely reductionist, but it made sense as a kid. I want to make it clear that I'm not going to pretend or imply that my experience with Tourette syndrome or how I regard myself as being any kind of platonic Tourettic ideal. Too many people, both professionals and laypersons, get caught in the trap of trying to fit every condition and every individual experience into a checklist. When I was a kid, I had "Tourette's" because I had the motor tics. Today I would have been seen as not having "real" Tourette’s, but rather "Tourettic OCD" because I lack the now-required vocal tic. The truth is, it really doesn't matter what label I'm given. What went on inside my brain would have been the same either way.

As a kid, I loved being active. I grew up near forests, swamps and ponds and spent most of my time climbing, digging and scrambling over every surface I could find. Then, sometime around when I turned six or seven, things changed. At first, it was just the tics. That my body would shake and twitch without warning was bad enough, but it was the compulsion that followed that was worse. My Tourette's was linked to OCD, and I would have to repeat each tic repeatedly in order to feel safe after.

"My body had become my enemy."

One of those fragmented comic-book-panel memories I have is coming back from recess, crying in confusion and frustration at my inability to make my brain or body stop swallowing and kicking my foot a certain way as I tried to walk. I wanted it to stop so badly, but neither my brain nor my body appeared to listen. The OCD had locked in, giving my stupid child body the fear that if I didn't keep swallowing and kicking that foot, something worse would happen. I was too young to understand what was happening, and it didn't feel like these problems were coming from my mind. It felt like my body was just rebelling against me. My body had become my enemy.

As the tics continued, my body became antagonistic in other ways. Everything felt wrong, as though every sense was magnified a thousand times. Someone might give me a friendly pat and I felt like I was being violently attacked. Touching certain textures would set off a storm of tics, even just standing in the wrong breeze. Over the next decade I slowly stopped being active, gave up those hobbies, and retreated into a "safer" world away from my physical body. All geeky and outsider media became an escape, but none more so than the shiny, newly released Super Nintendo Entertainment System.

Super Mario Bros.'s iconic World 1-1 Super Mario Bros.'s iconic World 1-1.

I liked videogames -- what kid didn’t? -- but at first they weren't some all-consuming aspect of my life. As I retreated from an alien body, however, they took on a new importance. They were a way I could still feel like I was being active without having to worry about the tics or the sensations overwhelming me. I couldn't go out and run through a field jumping on turtles anymore, but Mario could, and I could control him. I could use him as a digital diving suit, a surrogate body. I could enter these worlds and be free to move inside them, but without risking a tic attack. In fact, it seemed to help the tics. When I placed my mind "inside" the little digital men and women on the screen, I didn't suffer, or at least didn't notice, any twitching.

Even the in-game deaths were calming. By now I was used to a life where my body might do something I didn't ask it to do, or do something I did ask it to do completely wrong. It was frustrating, being unable to accomplish a certain task not because I wasn't able to, but because my body wasn't listening to me. Meanwhile, in well-made platform-game worlds, the characters responded perfectly to each command I made. If Mario died, it was because I didn't make the right move, not because I tried to but he refused. It was comforting that whether I succeeded or failed in the game, it was consistent. Failure that I could understand was another reason to retreat into these worlds.

Videogames would end up becoming more than just self-medication as well. In my teens I began biofeedback therapy that incorporated games. Electrodes were attached to my head that measured my brain waves, and the ratio of these waves would then control what I saw on the screen. All brains produce patterns made of delta, theta, beta, gamma and alpha wave activity as you engage in different activities . These repetitive, oscillating patterns can be measures with an EEG. Of these, alpha are the best known, measured by EEG during moments of "relaxed wakefulness" and associated with REM sleep. Gamma rays are the fastest frequency, and and are associated with cognitive processes. Delta waves are slower, and associated with deep sleep. We're still learning exactly what all these different brain waves do and in what combinations, but there is a lot we've been able to infer already. Brains with Tourette's produce more theta waves in their frontal lobes than others. Theta waves aren't as well understood as others, but in other mammals they are linked to movement. Theta waves are also believed to be linked to memory formation and navigation in humans. These excess theta waves are what cause the "record skips" I mentioned earlier.

Readout from an EEG machine monitoring human brainwaves (Andrii Cherninskyi, Wikimedia Commons). Readout from an EEG machine (Andrii Cherninskyi, Wikimedia Commons).

The goal of biofeedback therapy is, essentially, to train your brain into producing the desired ratio of brain waves. After years of thinking of the mind as the actual "me" and the body as something alien, this was the first time I had heard people talking about one's brain as something other than oneself. Like my body, it was something that could be trained and tricked and had its own agenda and activities beyond what you yourself wanted to do or feel.

"Despite what your may brain tell you, it is very easily tricked."

One such biofeedback game involved a rocketship race. I was asked to concentrate on the rocket, and as long as my brain produced the right ratio of brain waves, the rocket would move faster. If I slipped out of focus, the rocket would drop in speed and the others would pass it. Another biofeedback "game" might work in the opposite manner. I would be asked to relax, and as long as I produced the appropriate delta brain waves, the non-copyright-infringing Pac-man knockoff would move away from the ghosts at a consistent speed and the music would play normally. If my OCD started kicking in and I began to hyper-focus instead of relax, the animation would become jagged and the music discordant and out of rhythm. Naturally, my brain wanted to experience the consistent music, and so was "tricked" into learning new ways to relax or focus. Both games would also monitor the theta wave activity, and if my brain started to produce too much of those, the on-screen activity would become jagged as well.

While there's no way to "cure" neurological conditions like Tourette's or OCD, as an adult I have virtually no physical tics anymore. The biofeedback therapy is not the sole reason for this, but if nothing else it helped make me aware of how that childhood terror of my body and subsequent retreat into the mind was based on a false dichotomy. A false idea that the mind and the body were separate entities at odds with each other.

Lars Doucet's Tourette's Quest (2012). Lars Doucet's Tourette's Quest (2012).

Despite what your may brain tell you, it is very easily tricked and does not exist in some idealized state separate from the rest of your body. Games helped ease my brain's issues with theta waves, but that should indicate that the reverse is possible as well. The games I played outside of biofeedback therapy were modifying me as well. The biofeedback therapy changed my brain's behavior because my brain wanted to feel good. Our brains are willing to change dramatically if the outcome is feeling good, and can also be aggressively stubborn about changing if it means feeling bad, even if the outcome is still better. Placing myself in those digital avatars felt good, better than the tic-filled alien cage of my body -- but when I left the digital bodies, I still had to live inside my real one, and all my selfish brain wanted to do was escape back to the digital worlds and feel good again. Taken to extremes, the digital diving suits had a seductive, addictive quality.

"We love our safe, perfect, digital bodies so much, it's sometimes hard to notice just how much of ourselves we've placed within them."

Everyone wants to escape something, be it a neurological condition or just a bad day, and videogames have become among the easiest and most accessible way to do so. We love our safe, perfect, digital bodies so much, it's sometimes hard to notice just how much of ourselves we've placed within them. Today we have players who have put so much of themselves into them that they see media criticism as personal attacks, and who even perceive such "attacks" on favored media or hobbies as equivalent to suffering actual violence . We have become something beyond cyborgs, not incorporating mechanical bodyparts but legions of entire bodies that exist between our minds and our screens. They do what we can't do, they bleed and love for us, and we desperately hold on to the illusion that we are too clever to let that change us. I don't think my condition made me more susceptible to the benefits or trickery of those digital bodies. If anything, I think the experience of dealing with it made me aware that everyone is susceptible.

Top image source: Alan Williamson, Five Out Of Ten magazine. Used with permission.