Speaking about my Syndrome

You don’t have a right to the cards you believe you should have been dealt. You have an obligation to play the hell out of the ones you’re holding. ―Cheryl Strayed
Even if it’s not your ideal life, you can always choose it. No matter what your life is, choosing it changes everything. —Andre Agassi
Self-exposure is commendable in art only when it is of a quality and complexity that allows other people to learn about themselves from it. —Susan Sontag

*Above: A brain alive with (hyper)activity, crawling with connections of every shape and size.*

For me, things are a bit harder.

Walking is harder.

Talking is harder.

Opening up is harder.

Sitting (still, no less) is harder.

Typing these very words is harder.

Such is life with Tourette—one lived at the uncomfortable intersection of control and chaos; one lived with thorn in both head and heart.

And yet, I am careful not to quiet its pain.

I treasure my scars—those visible and invisible. For I know I did not bleed in vain.

Albert Camus captures this elusive feeling better than I ever could in his Myth of Sisyphus:

There is no sun without shadow, and it is essential to know the night. The absurd man says yes his effort will henceforth be unceasing…he is still on the go. The rock is still rolling…Sisyphus teaches the higher fidelity that negates the gods and raises rocks. He too concludes that all is well…The struggle itself toward the heights is enough to fill a man’s heart. One must imagine Sisyphus happy.

I have been writing long enough to know that when it comes to something deeply personal and idiosyncratic like a disability—something few people have ever lived with or thought deeply about—it takes an intimate story to draw readers in and help them relate. Without the emotion of firsthand experience, the topic is too abstract, too out-of-reach.

Because of this, I accepted my friend Ben Brown’s invitation to appear on the Tourette’s Podcast.

In Ben’s far too kind words:

[In this episode, w]e talk with the eloquent Tom White, who works in the space of startups, in a great conversation covering [his] pursuit of intellectual curiosities and how to keep momentum through often serious challenges.

What follows is the most raw, vulnerable conversation I have ever had about my condition.

With this searing display’s intimate detail, I attempt to give color to the void that can sometimes be life with a disability.

This is my unvarnished truth: pits, pockmarks, and all.

It’s another earnest stab at answering that impossible, most frequently asked question:

What does it feel like to have Tourette syndrome?

I offer some words about my head that I hope will touch your heart.

I hope they are met with knowing nods from veterans of similar campaigns.

I hope they make you feel and be felt, see and be seen.

More, I hope that they affirm life’s richness and beauty.

Nota Bene: The interview begins at the 6:40 mark in the episode. It was recorded in the fall of 2022.

I have lost jobs, lost relationships, lost friendships with individuals that just were not able to cope with it. And there's a lot of scars and guilt and what have you about that. But over time, iron sharpens iron.
I optimize for learning and for intellectual curiosity, because just like idle hands are the devil's play things, an idle mind is not optimal for someone that has Tourette or OCD…I optimize for being busy, because I know what it's like to be in your own head…it's very, very easy when you have a hyperactive neurochemistry to trick yourself into going down deep, dark rabbit holes that are not great places to be.
It comes up every second of every day. It's a vicious, cruel, difficult disorder. But I think my curse is very much my blessing, because of Tourette, because I'm hyperactive, I think more quickly, make connections more readily, and am able to approach things in a very, very different way than most individuals, to connect dots in an interdisciplinary fashion that hopefully leads to novel insight, interesting outcomes, a good investment, more empathy. Like many things: our gifts are curses, but our curses are also our gifts.
Like Shakespeare said, “Nothing either good or bad, but thinking makes it so.” I truly believe that; maybe I don't have agency at all times over my movements or my words because of my tics, but I have agency over my perception, I can choose whether it's good or bad.
Because of Tourette and OCD, I’m much more hypersensitive to my environment and am thus a more keen observer to the smallest of minutiae, which I think makes for good writing…In this way, a lot of my writing actually happens away from the keyboard via this thinking and the cognitive processing that happens below the surface via observation and documentation…The act of putting it all together, whether it be a research report or a piece of fiction or a poem is kind of like assembling a quilt: it's a latticework of things to be put in the proper order.
It takes one song, one piece of writing, one podcast to change everything for people. That's why everyone should share. One swing of the bat can hit the grand slam that could change your personal or professional life, lead to a good conversation or a partnership or a relationship…it's invigorating.
Two favorite quotes follow: René Descartes said “You just keep pushing. You just keep pushing. I made every mistake that could be made. But I just kept pushing.” and then Winston Churchill wrote "If you're going through hell, keep going." Because life with Tourette is hell. It is hellish. It is miserable. And it is impossible to convey to individuals how disconcerting, discomforting it is to live with a neurological car alarm for lack of a better term. But you keep moving forward, you do not stop because you will get through.
Candidly, that’s the reason why I originally got involved with the Tourette Association, and PCORI, the Patient-Centered Outcomes in Research Institute. Though I don't want to talk about Tourette, I don't want to be defined by it, I have a duty to talk about it for those individuals that aren't as lucky as I, those that aren't able to leave their homes or to work a normal job or to interact with broader society. If I can help, inspire, or make one person feel better, I'm going to do it. Because I've had individuals that I've looked up to that have done that for me—Tim Howard, for example.
If I can help one person by speaking out, that's a victory. That's why I gave the TED talk though it was deeply uncomfortable. That's why I write about it, though it is deeply uncomfortable. That’s why I'm doing this, because I want to fundamentally help individuals, decrease the stigma, and eventually, hopefully be able to fund novel, biochemical, neurochemical, or neuropsychiatric solutions that are able to chip away at this vicious disorder. So that's how I ended up in Minneapolis at the conference with you.
If intrigued or inspired, I encourage you to listen in full: