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Don’t Judge Us By What You See
Physical limitations, such as tonic-clonic seizures, can be easily observed. And because of this, we often have other skills and talents that are overlooked or unnoticed by our condition. Watching a tonic-clonic seizure is not something that is easily forgotten, but it doesn’t mean we should be treated differently. Instead of making assumptions about our physical limitations, ask us questions–be curious. The more open-ended questions you ask, the more you will learn about this complex disease and the judgment and assumptions will melt away.
Asa part of our “Unstoppable” series, we had the pleasure of interviewing Jonathan Tuteur.
Jonathan Tuteur is an Executive Coach, Management Consultant, and author of the forthcoming book Seizing Today: Discovering Purpose and Authenticity Amidst Life’s Extraordinary Challenges (Spring, 2024). For the past 15+ years, Jon has battled epilepsy through more than 500 seizures, 40+ days and nights in the hospital, 15 holes drilled in his head, and over 200 medical tests. Now, on the other side of three brain surgeries, Jon is sharing his transformative journey through the complexities of epilepsy and how his condition ignited a passion for resilience, courage, and human connection.
Thank you so much for doing this with us! It is really an honor. Our readers would love to get to know you a bit better. Can you share your “backstory” with us? Do you feel comfortable sharing with us the story surrounding how you became disabled or became ill?
When I talk about my story many people assume that I was born with epilepsy, but in fact I had my first seizure at 30 and it was completely out of the blue. Epilepsy can impact anyone at any time. And to this day, like so many others, I still don’t know the answer to the question, why did I start having seizures? Uncertainty is one of the most exigent emotions that humans experience especially when it comes to our health and so I explore that quite a bit in my upcoming book, Seizing Today: Discovering Purpose and Authenticity Amidst Life’s Extraordinary Challenges (Spring, 2024).
I have what’s called cryptogenic or idiopathic epilepsy meaning there isn’t a known cause. That kind of uncertainty has definitely been a struggle, but we do have a working hypothesis, which we most likely won’t ever be proven, but according to my doctors it’s certainly plausible. It’s what my mom calls “trauma in the womb”. My life began in a hospital room packed with doctors, residents, and medical staff ready to witness a medical anomaly. A mostly otherwise uneventful pregnancy and anticipated routine C-section revealed an unexpected complication — one of my sibling’s fetuses’ grew a vein from her placenta to mine as a means of survival.
Our birth was nothing more than an outrageous dinner party story until, at age 30, I had my first seizure. Almost 4% of the world’s population lives with epilepsy and nearly 65% navigate it without a known cause.
What mental shift did you make to not let that “stop you”?
I wouldn’t have been able to articulate it this way when I was first diagnosed, but I read a book that really resonated with me. I highly recommend The Obstacle is the Way by Ryan Holiday. It helped me realize that my mental shift was turning this completely unexpected diagnosis into a positive. That’s not to say that I would ever wish epilepsy or any disease on anyone, but rather than asking myself “why me”, I challenged myself to find the gifts in my situation and live my best possible life.
Can you tell our readers about the accomplishments you have been able to make despite your disability or illness?
I have been able to transform my life and career from living in a state of cognitive dissonance to exploring my passions and fully leveraging my superpowers, one of which is Emotional Intelligence (EQ). Without this, the innumerable extreme emotions I experienced throughout the past 15+ years living with epilepsy would have most certainly resulted in a different outcome.
Since I pivoted my career about four years ago, I wake up most mornings pinching myself that I get to do this work everyday. I never thought loving what I do for a living was a real possibility, but that’s exactly where I am now. I am incredibly passionate about my work and smile more now than ever before.
What advice would you give to other people who have disabilities or limitations?
To borrow from one of my favorite authors, Glennon Doyle, you can do hard things. Again, for me it’s all about mindset. It’s easy to feel sorry for yourself because of your limitations, but there are so many other possibilities. There are always other ways to think about your life that can motivate you to achieve your goals and even exceed them. Writing a book has been in the back of my mind for many years, but I never let my brain go there. I assumed it was too hard and how could I possibly make the time for it. Having three brain surgeries and enduring the lengthy recoveries were the hardest things I’ve done in my life. Writing a book pales in comparison. After I proved to myself that I truly could do really hard things, writing this book–while not easy by any means–was a goal I knew I could achieve and I’ve made it happen.
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?
There are many people who have helped me along the way from all parts of my personal and professional life, but if I had to pick one person it would be my wife, Julia. I hope that doesn’t sound trite, but it’s true. Her selflessness is beyond imaginable; always putting others first regardless of the circumstances. She pushed me to uncomfortable places which have led to where I am today. Julia was the glue in our family caring for two very young children at home during my more than 40 days and nights in the hospital. I know for certain I would not be where I am today without her love, support, and strength.
How have you used your success to bring goodness to the world?
Everything I do in my career is centered around helping people, groups, teams, organizations, etc. to improve and become their very best. I am also on a crusade to help normalize vulnerability for men and to talk about epilepsy. In my view, vulnerability is power and there is strength in vulnerability. It’s actually the opposite of weakness. Imagine if we let go of the need to hide our vulnerabilities and instead embraced them? We would show up as our authentic selves, create more human connection while also helping to normalize and destigmatize epilepsy.
I’m also a huge believer in the concept of Freudenfreude which literally translates from German as ‘joy”, and is the opposite of its better known cousin, Schadenfreude. Freudenfreude is the joy we feel when others succeed, especially when it doesn’t involve us. In my opinion, Freudenfreude is one of life’s greatest pleasures and one of the keys to a fulfilling life. When we’re able to let go of considering how we fit (or don’t) into others’ successes and focus simply on them, their hard work, dedication, and their achievements, these feelings can be even more joyful than celebrating our own successes.
Can you share “5 things I wish people understood or knew about people with physical limitations” and why.
1 . Don’t Judge Us By What You See
Physical limitations, such as tonic-clonic seizures, can be easily observed. And because of this, we often have other skills and talents that are overlooked or unnoticed by our condition. Watching a tonic-clonic seizure is not something that is easily forgotten, but it doesn’t mean we should be treated differently. Instead of making assumptions about our physical limitations, ask us questions–be curious. The more open-ended questions you ask, the more you will learn about this complex disease and the judgment and assumptions will melt away.
2 . Our Physical Limitations are Not Our Identities
Epilepsy, or any physical limitation, is not my identity. Just like everyone else in the world, we are all layered and complex, and there is so much more to us than just what you see with your eyes. Epilepsy doesn’t define us.
3 . Don’t Jump to Conclusions About Our Condition
Specifically for epilepsy, I wish everyone in the world understood that if you have a seizure that you are not possessed by the devil. For some this may sound like hyperbole, but there are still many people in this world who believe this myth. I have had two fairly recent conversations–one with a pediatric neurologist in the United States and a friend from another country–both of whom told me stories about how exorcisms were still being conducted on people experiencing seizures. This is an extremely disconcerting stigma that we must eliminate.
4 . There Often Can Be Gifts in Physical Limitations if We are Open to Finding/Accepting Them
There is a silver lining in almost every life event that appears dark and scary; it’s a matter of searching for it and focusing on it. My 40-plus days and nights in the hospital could have easily led me down a deep, dark hole. Instead, I intentionally focused on the silver linings which included time to read and research and time to dream. This was when the idea to write a book was born.
5 . We Need Human Connection as Much If Not More Than Those Without Physical Limitations
During my lengthy time in the hospital, there were periods where I felt more like myself than I had in many years. The connections I experienced throughout that period under 24/7 surveillance made an otherwise awful situation tolerable, even enjoyable at times.
Three brain surgeries in a matter of months — I think it’s fair to say — qualifies as extraordinary. Whether it’s brain surgery, caring for a family member, dealing with a career shift, a heartbreak or anything else that elicits a strong emotional response, it’s in these moments when we need connection the most. So, why do many of us turn inward during these challenging times?
What is it that makes sharing our concerns, our shame, our guilt, and our vulnerabilities difficult? How can we shift our mindset to turn these perceived weaknesses into strengths?
Ultimately, human connection is about one’s ability to make others feel special, something all humans innately desire. After all, isn’t that what we strive to do with our children and our partners? In a world full of disconnection, what could we achieve if everyone focused more on connection? The possibilities are limitless.
Can you please give us your favorite “Life Lesson Quote”?
“I’ve learned that people will forget what you said, people will forget what you did, but people will never forget how you made them feel.” — Maya Angelou. I use this quotation as a baseline for all of my work and in life in general. How I make people feel, based on my actions, my body language, my words, my tone, etc. is a key success factor for everything that I do.
We are very blessed that some of the biggest names in Business, VC funding, Sports, and Entertainment read this column. Is there a person in the world, or in the US whom you would love to have a private breakfast or lunch with, and why? He or she might just see this :-)
Wow, there are so many, but if I had to pick one it would have to be Jon Stewart. I have always loved his work and his dedication to the causes that are most important to him, including veterans. As part of his support for vets, he has advocated for the epilepsy cause through working with one of the phenomenal epilepsy non-profits called Citizens United for Research in Epilepsy (CURE). Jon headlined the 2016 CURE Annual Benefit as part of Military Appreciation Month with his, “characteristic blend of satire and sincerity”. The event drew a record crowd of over 1300 people and raised over $2 million for epilepsy research.
Over the past couple of years, I have had countless people ask me, “Has anyone ever told you that you look like Jon Stewart?” At this point, I’m able to stop them after, “Has anyone ever told you…” and answer, “Yes, I know–Jon Stewart” with a smile.
In a small world story, I teach a class on Emotional Intelligence and one of my students was in Jon Stewart’s fraternity in college and he couldn’t have said enough good things about Jon. He also said to me, “As soon as you walked in the room, even from the side, you looked just like him.” We shared a couple of great laughs as I learned a bit more about Jon in his College of William & Mary days.
I was also recently interviewed for my book on ABCs Good Morning Washington and the anchor started the interview with, “Has anyone ever told you that you look like Jon Stewart? When I looked over at you in the waiting area I thought to myself, “Is that Jon Stewart?!”
Lastly, it was Jon’s birthday not too long ago and someone posted on social media his headshot along with a happy birthday message. I showed the headshot to my daughters (6 and 3 years old) and asked them, “Who is that?” and they responded, “Daddy!” I could go on, but I think it’s fair to say that we need to meet at some point as we have to be related in some way.
Thank you so much for the time you spent with this interview. We wish you continued success and good health!
