This piece, written by Savio P. Clemente, originally appeared in Authority Magazine.
Jerry Gidner has Tourette Syndrome and is a member of the Board of Directors of the Tourette Association of America. He is a citizen of the Sault Ste. Marie Tribe of Chippewa Indians. He is a long-time executive in the United States Federal government.
Thank you so much for joining us! Our readers would love to get to know you a bit better. Can you tell us a bit about your backstory?
Iam a Native American — a citizen of the Sault Ste. Marie Tribe of Chippewa Indians. It has been a great privilege that I have been able to spend a large share of my career working on behalf of Native Americans for the United States Federal government. One of my hobbies is writing. I have published a few poems, and a children’s book: If You Were an Aardvark: An ABC Book Starring Mammals. I write a lot for fun as well. Other poems, short stories, whimsical observations, memoirs, mostly. Things that I think are humorous. Of course, like many writers, I have my great unfinished work under way. In my case it’s a fantasy series, full of the requisite dragons and magic. I have been dabbling in it for more than a decade and hope to have time to return to it again someday soon. Most importantly for this interview, I have Tourette Syndrome, which is a neurological disorder characterized by involuntary motor and vocal tics.
Can you share with us the most interesting story from your career? Can you tell us what lessons or ‘take aways’ you learned from that?
As far as I know, I am the highest-ranking federal employee with Tourette Syndrome. If you include civilian employees and the postal service, there are nearly 3 million federal executive branch employees. There are between 7 and 8 thousand members of the career Senior Executive Service. And I am the only executive I know of with Tourette. Obviously, I don’t know all the SES so there may well be others. But until someone else wants to walk this path with me, I am claiming the title as my own. The “take away,” which is a leadership lesson as well, is that it is important to own your own story. In fact, that has become a value by which I try to live. I have Tourette Syndrome. I can’t hide it. I can’t run away from it. I can’t make it go away. Tourette Syndrome can make life and your career an excruciatingly hard hill to climb. There is so much stigma and discrimination against those of us who have it. There are obstacles at every turn. For example, one of my tics is a little stutter breath before I talk. Not what you might think of as a stutter with words, but a series of quick puffs of air. A former supervisor told me I had potential, if only I didn’t stutter. Also, when I talk, my tongue flops around in my mouth. Visibly to anyone watching me. While I was getting my MBA, I was on a team making a presentation to a panel of judges. One of the judges commented that it was unprofessional to be chewing gum while making a presentation. The judge’s false perception about what I was doing hurt me and the entire team. And these are some of the minor, and less embarrassing examples.
And yet, somehow, I did make it to the upper echelons of the civilian Federal government. Now it’s my turn to help. Because I have reached an age in life and a position in my career where I can be open about it, and I can use what I know and what power I have to serve as a role model for anyone coming up through the ranks behind me. Not only in the government, but in the world in general. I can’t do that if I run from who I am. So, I decided to be proud of who I am instead.
What do you think makes your organization stand out? Can you share a story?
Talking about the Tourette Association of America (TAA), I would say our passion and agility and resilience. Like many non-profits, the pandemic really hit the TAA hard. We had to cancel many in-person events, including conferences and fundraising galas, all while our community — those affected by Tourette Syndrome — needed our help more than ever. But watching first as a person with Tourette Syndrome, and since February 2021 as a member of the Board of Directors, I think the TAA has done a terrific job. We converted events from in-person to virtual seemingly overnight. I am pretty sure we are offering even more programming now than we did before the pandemic. And I credit our staff and a really strong nationwide network of volunteer-led Chapters and Support Groups, many of whom have Tourette Syndrome themselves.
None of us are able to achieve success without some help along the way. Is there a particular person who you are grateful towards who helped get you to where you are? Can you share a story?
Well, I have three people, but I will discuss them as a group, so it will seem like one! These are three friends, who I worked with long ago and became friends with outside of work. I talk to at least one of them every single day, and some days all three. We have laughed together and cried together and have been through lots of ups and downs since we all met. There was a period in my federal career, where I was involuntarily moved out of a job that I really enjoyed. Not because of my performance, or because of anything I had done, but because new leadership made incorrect assumptions about me. That was definitely a low point in my professional self esteem. But these three friends knew who I was and what I stood for, and they supported me through that rough patch. Knowing that I had their backing and that they believed in me gave me a foundation to recreate what I thought about myself and to reinvent me for the next stage of my career. Which has been wonderful. I know that they will always support me, and they know that I will always support them. It’s powerful to know that I have that backstop. They are my secret weapon.
Ok thank you for all that. Now let’s shift to the main focus of this interview. We would like to explore and flesh out the trait of resilience. How would you define resilience? What do you believe are the characteristics or traits of resilient people?
I think resilience is the ability to keep going when you encounter setbacks. Maybe its fighting through the obstacles and successfully going through them. Maybe its figuring out a way around the obstacles. In other words, finding a different route to the same goal. All of us encounter setbacks. Tourette’s has been something that has required a lot of resilience from me. I have been ticcing for 52 years and estimate I have ticced over 125 million times to date. Can you imagine how much that makes your body hurt? I am sore. All the time. I twitch my toes 10 or 20 times a minute. All day. Every day. That makes the muscles in the bottom of my feet hurt so much that it can be hard to walk some mornings. I have to roll my feet on tennis balls and soak them in hot water, and constantly, constantly take care of them to stop them from getting worse. As I type this, I can feel the bottoms of my feet tighten and become painful. The same is true for many other parts of my body.
So, Tourette is a constant physical factor in my life. I decided a long time ago, though, that I just have to keep going. No matter how bad the tics might be, I am going to expend as much effort as I must to keep my body functioning well despite chronic overuse issues from Tourettes. The same is true in my professional life. No matter how badly some people may treat me, I refuse to let other people derail my career. I will always — always — find another way to my goal. The resilience that I developed because of Tourette is what lets me keep doing that.
Now that I am on the Tourette Association of America Board of Directors. I am trying to let the kids who are being diagnosed today know that what many might see as a weakness — Tourette Syndrome — is in many ways a strength because of the gifts it has given me. Like resilience.
When you think of resilience, which person comes to mind? Can you explain why you chose that person?
All of my grandparents come to mind, but my paternal grandmother in particular. She was a farm wife starting before there was electricity and running water in their house. She never stopped going. She raised four kids. In addition to cooking three meals a day for that brood, washing and ironing the laundry, and getting a college degree when she was in her 50’s, I think, she helped farm until she was in her 70s or 80s. I remember when she and my grandfather were quite old, seeing her in blue farm coveralls driving the tractor while my grandfather loaded bales of hay on the wagon she was pulling. She lost a daughter in a car accident and had a son who had a debilitating accident of his own, yet she just never stopped. Even in very old age, when we had family gatherings, she would be carrying chairs into the kitchen from other rooms, and we would have to intervene and take the chairs from her. And you could never stop her from cooking, either. The kitchen was her domain, and she was going to feed people until the day she died. And that’s pretty much what she did.
Has there ever been a time that someone told you something was impossible, but you did it anyway? Can you share the story with us?
Actually, no. I have never been told that. At home growing up, my parents did not make a big deal about my tics. In fact, we never discussed my tics when I was growing up. We all knew I was ticcing, but we didn’t know why. So the tics didn’t change the expectations my parents had of me. There was no pep talk about how I could do things despite ticcing. We just ignored the tics and carried on with life. I was expected to graduate high school, go to college, and live my life, whether I had tics or not. So, I did.
Did you have a time in your life where you had one of your greatest setbacks, but you bounced back from it stronger than ever? Can you share that story with us?
I did my master’s thesis research for 7 months in India. The good people of India thought I was great entertainment. In New Delhi, where I lived, my tics did not matter. In the cacophony created by a confluence of millions of residents, hundreds of thousands of tourists, diplomats and spies, yogis and lepers, Hindus and Buddhists and Jains, and Baha’is, one lone twitchy man did not bear notice.
The countryside was a different matter. I traveled a lot, soaking it all in, taking trains and buses from one remote town to another. Usually by myself. I was mostly left alone, and to the extent I was not, it was due to curiosity, not hatred or fear. But it could get awkward.
One afternoon at a dusty train depot sticks in my mind. The haze of time has erased where I was coming from or where I was going to, but not the events while I was awaiting the train for the next leg. It was hot, and there were no benches. So, I sat outside on the cement platform, leaning against the ancient brick wall of the depot itself. About 30 fellow travelers, all locals, all from India, arranged themselves around me in a semi-circle. Me against the wall and them arranged in an arc around me. 10 feet away. Not saying a word. They appeared to know only tourist English, and my Hindi would have embarrassed any toddler on the sub-continent. So, I sat there in silence, dripping sweat, back hot from the sun-fired brick behind me, until the next train came, as my companions stared. At me. Watching me tic. Without saying a word. For three hours.
It was not necessarily a setback, I suppose. There was no malice there. I did not feel like I was in danger. It was just an awkward, embarrassing day. One of many from a life living with Tourette Syndrome, but certainly one of the worst. Many of us with Tourettes try to hide our tics. On that day, my tics and I were the center of attention. Exactly where I did not want them to be. Days like that can defeat you if you let them. I wouldn’t say I was defeated, but I definitely shrank back inside myself, behind my protective walls, and cried a lot on the inside. Being on display like some sort of zoo exhibit doesn’t do much for your self esteem. But I am proud of the fact that I didn’t let that day, or any other bad day, destroy me, and now 30 years later, I am on the Board of Directors of an organization devoted to educating people about Tourette Syndrome so that episodes like that don’t happen in the future.
Did you have any experiences growing up that have contributed to building your resiliency? Can you share a story?
Did I have any experiences that didn’t? Growing up with Tourette Syndrome is hard. I wasn’t diagnosed. We didn’t know what it was. And kids are quick to pick on anyone who is different. I was constantly bullied, mocked, and mimicked. Even as late as college, I had a roommate who openly imitated my tics to my face and gleefully bragged about how much people laughed when he did it when I wasn’t around. This was someone I had lived with for a the better part of a year, who was part of a larger circle of people who I thought were my friends. And yet, one day, in the kitchen of an apartment we shared with a couple other guys, he stood in front of me, face-to-face, and from three feet away, imitated my tics. With exaggerated grotesqueness. I don’t remember his name, but I will never forget the hatred and disgust and contempt in his eyes as he mocked me.
When attitudes like that, and betrayal like that, are in your life, every day, over years and years, you have a couple choices. You can let it derail you or you can keep going. I am not sure how or when it happened, but I decided to keep going. It has been hard, and it has been lonely a lot of the time, but I am glad that I did. I still experience discrimination occasionally. It is common for people to not take me seriously because of my Tourettes. They can’t see beyond what they view as a ticcing freakshow, to the intelligent, passionate, funny, and capable person who lives in that same body. But I haven’t let it stop me from doing whatever I want to do.
Resilience is like a muscle that can be strengthened. In your opinion, what are 5 steps that someone can take to become more resilient? Please share a story or an example for each.
- Own your own story — It has taken me decades to be fully comfortable as a person with Tourette Syndrome. I wish I had a long time ago, because now I feel like I can do so much with it. And I wish I hadn’t wasted all those years. It is only now that I am embracing it with all my heart, that I feel like I can be a leader in the world of neurodiversity and Tourette Syndrome. As an example, anytime I give a talk now, I start out by telling everyone that I have Tourette Syndrome. It just takes it off the table as an issue, so they can focus on whatever I am talking about, rather than wondering “what’s wrong with that guy?”
- Find humor in situations — I think you need to find the humor in situations. Something may seem bleak, but there is nearly always humor there if you look. It may be dark humor. But being able to laugh at yourself, particularly, can get you through the bad times. In all my social media accounts, I describe myself, among other things, as a “twitchy bastard.” Why? It might catch someone’s attention. It’s not what they are expecting. It pokes fun at myself. Why not?
- Realize how insignificant it all is: If you look across the sweep of history, all our problems are relatively insignificant. I mean we live 100 years if we are lucky, and our species has existed for something like 200,000 years. Our lives are just blips in time. If you look beyond earth to the universe, we are a tiny fleck in an incomprehensible vastness. Whether you think that is because of God or science, or both, or something else, what we are is such a small part of what exists, that our setbacks really don’t matter. I tic. So what? In 10,000 years, when the Klingons discover earth, my tics and I will be long forgotten.
- Find a home base — In that vastness, we need to find a place we can feel free to be ourselves. We need a home base. Where people who love you and support you will let you be you. It gives you a place to explore from or retreat to if times are bad. My family is that for me, of course. But my friends are too. One of my best friends jokes with me about my tics. I’ll start thinking about something creative, and he’ll say, “There you go twitching again. What are you coming up with this time?” He doesn’t care, and that gives me the freedom to be me.
- Help others — If you are having troubles and are stuck, believe me there is someone who has it worse. Help yourself by helping them. It gives you humility and a sense of purpose and makes you feel good. It can be a huge help in getting you through a tough time. This is why I wanted to be on the Board of Directors of the Tourette Association of America. I didn’t have support when I was growing up with Tourette Syndrome. It’s important to me that all the kids who start ticcing today know that they are not alone, that they have the support of a whole community of people just like them, and that their lives can be ok.
You are a person of great influence. If you could inspire a movement that would bring the most amount of good to the most amount of people, what would that be? You never know what your idea can trigger. :-)
For the world to see the beauty in neurodiversity. . . . . And maybe more specifically, to ensure that resources are available so that neurodiverse people have the support they need and can achieve what they want to in their lives without fear of stigma or danger. I am a much better leader because I have Tourette Syndrome. I have empathy, humor, vulnerability, resilience, creativity. And I think it’s all from Tourette Syndrome. The world needs people like that. We need people like me in leadership positions.
We are blessed that some very prominent leaders read this column. Is there a person in the world, or in the US with whom you would love to have a private breakfast or lunch with, and why? He or she might just see this, especially if we tag them :-)
Brené Brown. No question. I am obsessed with her work. Her books and her podcasts. She is so influential. I listen to her podcasts while I am walking, and just about every episode my head explodes, and I text thoughts to my work number to remind me to incorporate things she or her guests have talked about. I would love to be on her podcast to talk about the leadership gifts that Tourette Syndrome has given me.
How can our readers follow you on social media?
@el_gid on Twitter
Jerry Gidner on LinkedIn and Facebook
My website, where you can find some of my writing, is www.jerrygidner.com
The Tourette Association of America is at www.tourette.org.
This was very inspiring. Thank you so much for joining us!