Seizures, Surgeries and Living Authentically: Talking About Epilepsy - Jonathan Tuteur
Jonathan Tuteur - Bio
Jon is an Executive Coach, Facilitator, Speaker, Author, and Management Consultant with over 20 years of experience working across numerous industries including Financial Services, Hospitality, U.S. Federal Government, State & Local Government, Nonprofit, Higher Education, Retail, Healthcare, Real Estate, High Tech, and Consulting.
Jon’s Executive Coaching work focuses on helping individuals and groups optimize their performance, enhance their mindset, and achieve their potential. He brings warmth, authenticity and humor to his sessions, which helps create a safe space for his clients to “go deep” and focus on the most impactful areas for growth and development. His coaching clients include individuals at all levels of personal growth, from emerging leaders to C-suite and senior executives.
He has helped his clients with a multitude of challenges including promotions, identifying and living their passions, optimizing their charisma and executive presence, overcoming their perfectionism, and leaning into their power & embracing productive conflict. He has held senior leadership positions at multiple consulting firms including Accenture. Jon’s consulting work focuses on various organizational challenges such as employee learning & development, change management, growth & organizational strategy, and employee & organizational behavior. He facilitates training sessions and workshops for his clients on various topics including emotional intelligence, conflict resolution, leadership and communication.
His experience also includes extensive global travel across five continents supporting large-scale change initiatives for various clients.
He received his Bachelor of Business Administration from The George Washington University with a double concentration in Human Resource Management and Information Systems and a Minor in Psychology. He received an Executive Certificate in Leadership Coaching from Georgetown University and is an International Coach Federation (ICF) Professional Certified Coach (PCC). Jon is also certified in the Emotional Intelligence Quotient Inventory (EQ-I 2.0 and EQ 360), the Myers Briggs Type Indicator (MBTI), Leadership Circle Profile, and the DRiV assessment. His new book Seizing Today: Discovering Purpose and Authenticity Amidist Life’s Unexpecting Challenges is scheduled to be published in 2024.
Contact Links:
Summary:
In this podcast episode, we hear from Jon Tuteur, who shares his experiences of living with epilepsy after being diagnosed at 30. Jon talks about enduring over 500 seizures and undergoing three brain surgeries. Despite these challenges, he focuses on the positives that have emerged from his condition and emphasizes the importance of staying optimistic.
Jon discusses how his journey has taught him about resilience, the real timeline of recovery, and the value of being open about one's condition. He highlights how being honest and vocal about his struggles has helped to build connections and foster support from others.
The episode isn't just for those who have epilepsy. Jon's insights are universal, offering lessons on overcoming obstacles and the power of community support. His story is a testament to the strength found in vulnerability and the impact of sharing one's experiences to educate and reduce stigma around invisible conditions.
Takeaways:
Maintaining a Positive Mindset: Jon Tuteur emphasizes the importance of staying positive, despite the severe challenges posed by epilepsy. This positive outlook has helped him navigate through numerous medical procedures and life changes, highlighting that a positive mindset can be a powerful tool in dealing with any invisible condition.
Open Conversations and Reducing Stigma: By sharing his personal experiences openly, Jon illustrates how such discussions can educate others and dismantle the stigma often associated with invisible conditions. He encourages everyone to be vocal and honest about their struggles to foster a more understanding environment.
Curiosity and Understanding: Jon stresses the importance of curiosity and striving to understand what life is like for those with invisible conditions. He advocates for asking questions and learning from individuals' experiences to gain a deeper comprehension, rather than making assumptions based on limited or inaccurate information.
Self-Advocacy: Jon’s journey shows the necessity of self-advocacy in managing our conditions, securing necessary medical care, and ensuring accommodations in the workplace. His proactive approach in both his personal and professional life serves as a model for others on how to advocate effectively for oneself.
Asking Questions Over Making Assumptions: Consistent with his call for curiosity, Jon points out that making assumptions about someone’s condition can lead to misunderstandings and misrepresentations. He advises that asking questions to understand a person’s experience directly is far more supportive and informative.
Definition, Resources and Example Accommodations:
Definition: Epilepsy
Epilepsy is a neurological disorder characterized by recurrent, unprovoked seizures. It results from abnormal electrical activity in the brain, which can cause a variety of symptoms depending on the part of the brain involved. These symptoms can include convulsions, sensory disturbances, loss of consciousness, and other physical signs.
Seizures Talked About in this Episode:
Tonic-Clonic Seizures (formerly known as Grand Mal Seizures): These seizures are characterized by a sudden loss of consciousness followed by stiffening of the body (tonic phase) and rhythmic jerking movements (clonic phase). After the seizure, individuals often experience muscle soreness, confusion, and fatigue.
Focal Aware Seizures (formerly known as Simple Partial Seizures): In these seizures, the individual remains conscious and aware. Jon describes experiencing a sequence of sensory disturbances that include a peculiar smell, flashbacks like watching scenes from his life, and physical symptoms like sweating and nausea.
Resources:
Example Accommodations:
Workplace
Flexible work hours or a modified work schedule to allow rest after a seizure.
Quiet and private space available for recovery after a seizure.
Adjustments to work environment such as providing anti-glare screens or seizure alert devices.
Allowance for telework as needed, to manage health effectively.
Education for staff on how to assist in the event of a seizure.
School
Individualized Education Plan (IEP) or a 504 plan to provide tailored educational support.
A seizure action plan is communicated to school staff.
Rest periods and a place for the student to go for recovery post-seizure.
Flexible testing environments and schedules, including extended time for assignments and tests.
Access to medications and permission for the student to visit the school nurse as needed.
Chapters:
00:00:00 Living With Epilepsy
00:15:12 Breaking the Stigma of Epilepsy
00:28:29 Finding Your Voice and Overcoming Shame
00:43:07 Living With Seizures
00:49:18 Future Connection After Book Release
Transcript
Jon - transcript
Jon Tuteur 00:00
It's like this movie is playing in my head. I'm watching a scene from my life that happened previously. It's like a flashback. At first I called it deja vu, but it's not. I started really digging into okay, what's the definition of deja vu versus flashback? It's really a flashback. I'm watching a scene from my life that has already happened while I'm standing there. Sitting there, it's just wild. And then I get really sweaty on my hairline and really nauseous. And then the movie projector turns off and the seizure's over.
Tim Reitsma 00:38
Imagine this you have your first few seizures and people tell you not to share your diagnosis of epilepsy because they're afraid for you, afraid of the potential shame and discrimination you might face. While this is well-intentioned, you decide to do the opposite. Hey, tim here, and thanks for tuning in to another episode of Invisible Condition Podcast, where we talk about advocacy and unusually normal things, the conditions, diseases and illnesses we live with. We will end the stigma of invisible conditions by empowering voices and educating others, and today's voice is brought to us by John Tudor. With more than 500 seizures and three brain surgeries, we will hear a story that resonates with everyone who lives with an invisible condition, a story of hope, struggle, fear and resilience.
01:27
John has a book coming out soon called Seizing Today discovering purpose and authenticity in a life-changing diagnosis. We talk about the few stories in this book and I can't wait for you to hear them. Have a listen, all right, john. I am excited to connect with you. We connected, feels like months ago now I think it was months ago and we had a great conversation about your upcoming book, seizing Today Discovering Purpose and Authenticity in a Life-Changing Diagnosis. We're going to get into that, but I want to start off with asking you about, well, your condition to that, but I want to start off with asking you about your condition. You've had more than 500 seizures, three brain surgeries, 15 holes in your skull, all after the age of 30. Tell us about that.
Jon Tuteur 02:16
Yeah, it's been quite a journey. Again, I had my first seizure at 30, just completely out of the blue. A lot of people said what was your life like before that? Pretty normal. And then, yeah, here's this just crazy thing that happened, that at first we didn't even really know what was happening, because the first couple seizures, people didn't, or the first seizure, no one saw. Because the first couple seizures, people didn't, or the first seizure, no one saw. But it's been quite a journey around just medication and learning about the brain and how all this works and diving into supporting the cause. It's brought a lot of positives to my life, in addition to the significant challenges associated with it. So there have been a lot of positives to my life, um, in addition to the significant challenges associated with it. So that's you know, there've been a lot of silver linings.
Tim Reitsma 03:10
Yeah, Silver linings, and that's, that's a great outlook. Did you always have that outlook? You know, after seizure one, two, three, four, was it like what in the world is going on to where you are today with is you know, 500 seizures later, you're doing well and having a different outlook on your condition.
Jon Tuteur 03:30
You know, as I, as I was writing the book and I've I've been working on it for two and a half years, um, you know, I'm reflecting back on my mindset. Uh, 16, almost 17 years ago Now. I I really don't think I ever had the. You know, I never went down this rabbit hole of this is awful. Why me? You know, what am I going to do about this? I always really tried to focus on the positives, because what good was it going to do me to focus on the negatives, right? Yes, there are always times when it's harder and more challenging to stay positive, but for the most part, I think I've been able to do that over this period of time. It's just the way my mind works Well.
Tim Reitsma 04:25
I think it's a great mindset to have my listeners know I also live with a chronic and invisible condition called Crohn's and there are days where it's like, why is this happening? But what purpose does that serve, except for maybe an excuse to take the day off and watch Netflix or something like that? But that's just for me. You know I can speak from my experience and you know you had multiple brain surgeries. How are you doing now? How are you doing today?
Jon Tuteur 04:55
Really appreciate you asking. Two and a half years later, after the third brain surgery, I feel really good. It took time to get there, um, one of the one of the stories I talk about in the book is uh, you know, my neurosurgeon said after the third brain surgery it'll take you about two or three weeks to recover. It took a lot longer than that. Um, it was a good year before I started feeling back to myself, um, and now I think I'm, I think, definitely back there, um feel really good. Um, you know, nothing's really kind of off limits, um driving again. Uh, you know all all good things, my doing everything with my kids, um, so yeah, all all very positive right now.
Tim Reitsma 05:49
It's taken you a lot longer. Your your surgeon's like oh, a couple weeks and it took you almost a year. What was, what did it look like for you? You know that three-week mark. What did you look like then compared to now?
Jon Tuteur 06:05
it's funny because when we were talking about the recovery, he said to me plan to take two to three weeks off from work and I said how about one? Like joking but also serious. He, you know, neurosurgeons are pretty straightforward people. He, he was not joking with me. He said john, you're gonna get a heavy dose of steroids, you're gonna be exhausted, you're gonna need to take that much time off from work. I still didn't really believe him, um, and I think I said something like well, if I'm gonna be, if the stars are gonna keep me awake, then I can just work more I love that, that positive.
Tim Reitsma 06:52
It's like well, I might as well use this time totally, and that just um.
Jon Tuteur 06:58
And so, yeah, after, after the three weeks, um, I, I was just exhausted. I was falling asleep in the middle of the day, I was taking really long naps, I just didn't have energy, like I just felt totally off, not sick, but just drained of energy. Not sick, but just again drained of energy. Um, to the point where I actually reached out to him and said, hey, something's wrong here, what do you suggest? And he, he asked me to be admitted again.
07:36
I went back to Johns Hopkins and they did a whole bunch of tests and everything sort of came back normal, which was good, because his concern was, you know, there could be bleeding in my brain or significant swelling or something else going on. But while I was there, then he then he tells me, and I love him to death. And he's incredible. This is not meant to be disparaging, I just think it's kind of funny to look back on. Now he says to me you know I've had two patients recently that you know kind of similar situation to you and it really took them close to a year before they felt you know, back to themselves. And I was like, well, that would have been helpful information for the sheriff, you're telling me two or three weeks and now, oh well, it's I. I laugh about that now because you know I said this expectation in my head like, okay, three weeks, I'm gonna be back to work and everything's gonna be normal.
Tim Reitsma 08:36
And three weeks is very different than 52 weeks. It's that's, that's a. That's quite a gap, and I and and I can relate I had surgery last year and the doctor said, oh, about six weeks you should be back at it. And I was going back through emails and just when did I try to get back at it and I think it was like week three. I'm like, oh, I'm fine, I couldn't really sit at my desk because they cut my abs completely in half, but I was determined and ended up pushing myself way too hard and had massive setbacks. And so it's almost like the opposite, where three weeks. You're like, oh man, what's happening? I'm like, hey, six weeks, no way I could cut that down by five and a half. We try, we might physically feel okay, but our bodies need to heal and it takes time and we're all different, aren't we?
Jon Tuteur 09:33
Another thing he said to me to that point that really helps help me visualize it. You know, he said to me listen, you've had three brain surgeries in a matter of a couple of months with significant amounts of anesthesia. Each of those procedures was over four hours. That's a lot of anesthesia and the anesthesia was part of what was causing the exhaustion. But again, I just didn't have that information up front. But when he explained it then I was like, okay, that makes sense. Right, You're in my head, in my brain, three different times in a really short period of time and lots of drugs, not just anesthesia. Right, it's going to take some time. But you know, again, the expectation was totally different. If he had said it was a year up front, you know it would have been, it just would have been a different experience.
Tim Reitsma 10:26
But anyway, is there plan for more surgery? Or is three enough? You're, you've, you're, you're on that path of like I, I'm good now.
Jon Tuteur 10:37
Oh damn, you know, I just want to keep having surgeries, of course, let's, let's break some records here. Yeah, no, I I certainly hope that this is it. Um, since you brought it up, uh, I was having a conversation with with my neurologist after the surgery and he was sharing with me sort of the the research that they've done around this particular procedure um laser ablation seizure, um laser ablation surgery, which is still a relatively new surgery, and they're seeing that after about 10 years the efficacy starts to wear off. So there are patients that have had to have more surgery after around that 10-year mark. So that's always going to be in the back of my head, but he's not going to share that with me. But I certainly hope this is it.
Tim Reitsma 11:32
Yeah, and you've got 10 years of a lot of life to live before another surgery and just think of the medical advancements between now and then. It's going to be a completely different experience. But through all of this, you've had multiple MRIs in your life. I've had a few. They can be scary, right, this big, obnoxious machine. What is your experience with MRIs? Do they scare you? Are they, like you know, walk in the park. Now let's do it, and I know that there's a standard list of questions. We kind of had some fun with this in the pre-show, so talk to us a little bit about your MRI experience.
Jon Tuteur 12:17
Yeah, I actually have a chapter in my book I think I shared this with you. I call it the Brain MRI Concert Because, yes, it is just a fascinating experience. If you haven't, I know you have. But for listeners who haven't, um, it's sort of like what I, what I liken it to, is being alive in a coffin, um, you know, just completely enclosed, uh, and it's literally sounds like jackhammering. It's just really loud and pleasant noises. They give you sound-canceling headphones. Did you have this experience? They actually asked me what kind of music I'd like to listen to. I thought about it for a while. Maybe I'll be able to fall asleep in here. Van Morrison, something soft, it's the, the. The noises from the machine are so loud I couldn't make out what the music was at all. It could have been anything, I still wouldn't have heard it.
Tim Reitsma 13:19
So it's, it's just not a not a pleasant experience, but I I'm not claustrophobic, thankfully, if, if people are I can see how it'd be a really, really hard uh, experience for sure, uh, but you know, I just dealt with the headache and moved on, just move on, but it was a significant enough to write a chapter and, and I'm guessing, in that chapter is maybe some tips, or just even from your experience, if somebody is going for an MRI, never been what is something that you would tell someone.
Jon Tuteur 13:51
First, you alluded to it earlier, I'll address it now. Just, the questions that they ask are just fascinating, and so that's also in the chapter, but one of which is, you know, foreign objects that may be implanted in your body, and you know, some of them are a little bit uncomfortable to listen to and it's just sort of like, well, you're doing a brain MRI, why are we focused on objects that might be implanted in parts lower in my body? But again, if you can't laugh about it, right, so I, I just I try to try to see the humor in all these things. Um, you know, it's just being prepared for it. Just, you know, it's just not a pleasant experience, but it's certainly better than brain surgery. It's certainly better than, you know, having your abs opened up and having intestines removed or, you know, all these other things that we have to go through. Um, so, yeah, it's not fun, but there's much more.
Tim Reitsma 14:57
There's. There's a lot of not fun procedures. I know, you know we had a good chat about colonoscopies. We won't go there today, but you know, good, good chat about colonoscopies. You know we't go there today, but good chat about colonoscopies, we think about procedures that aren't fun. That's, I think, at the top of my list. But around epilepsy, for those who are listening, for those who might not know what epilepsy is, can you talk to us about your definition of epilepsy? And there's so much stigma attached around it. Let's go there. First off, let's have a definition, or define what it is.
Jon Tuteur 15:34
There's sort of a technical definition of epilepsy, a medical definition. I'm going to just give you mine. So it's sort of electrical storms in your brain, your neurons are firing in ways that they shouldn't be and that's causing the electrical activity, is causing the seizures to you know originate, and there's so many you know a big part of it is doctors still don't know why. In a lot of cases, yes, there are specific causes for epilepsy. Um, you know, traumatic brain injury, uh, is is one of the common ones. Um, but you go through that list, I go through that list. Like, none of that. I've never experienced any of that. You go through that list, I go through that list. None of that. I've never experienced any of that.
16:32
And to this day we don't know why, suddenly, at 30, out of the blue, like nothing else had happened in my life that you know would be, would make sense to trigger that, and so it's called idiopathic or cryptogenic epilepsy, when you don't know what the cause is. Idiopathic or cryptogenic epilepsy when, when you don't know what the cause is, um, we have a hypothesis which I think I shared with you. If that's helpful to to share Um, uh, so I'm, I'm a triplet, as I mentioned and, um, my, my mom is five foot one, so you know, having three babies in her tiny belly, we're knocking around in there, I'm sure. But even more interesting, my sister wasn't getting enough nourishment from her placenta, so she grew a vein from her to me and was feeding off of me and in essence I saved her life, and I like to remind her of that.
17:22
When they cut the vein, when they opened my mom up and they cut the vein, I started to bleed out, had to have a blood transfusion, had to stay in the NICU for, I think, three weeks. And so, you know, I think it's fair to categorize that whole event, or those events, as trauma in the womb. And so, you know, my neurologist said certainly plausible, but we'll never know right, there's no way of knowing. But we'll go with that one.
Tim Reitsma 17:53
Wow, yeah, so no known necessarily cause some plausible explanation. 30 years old, having seizures, again, like we said, multiple surgeries what stigma did you face? And even stigma that maybe you put on yourself, or stigma that you've heard or have actually been part of.
Jon Tuteur 18:17
Yeah, one of my favorite stories. I think I shared this one with you. I was at Epilepsy Foundation conference a couple years ago and I met a pediatric epileptologist and he was telling me a story about a patient of his who came in with his mother and they were talking about how he's doing and the mother looks at him and says, hey, we're going to take little Davey to church on Sunday for an exorcism. And the doctor was like no, no, no, no, uh, just because he's having seizures doesn't mean he's possessed by the devil. And this conversation was in 2021 in the United States. It is there. So there are still people who believe that. Um, uh, which I was shocked by, but you know, it's still out there. Um, you know, I know.
19:14
Further back, you know, if you look at um Tony Coelho, who, uh, uh, was the primary writer of the, the ADA, um, and had epilepsy himself. Uh, he really experienced a lot of um uh, discrimination and stigma. Um, you know, back when he was a child. Um, I think we're past some of that, but there's still a lot of misconceptions about what it is. And, um, you know, a lot of people in my life, when I was first diagnosed, said do not talk about it. Do not talk about it, um, you know, for fear that, uh, you know it could impact, you know, my employer. Could, you know, do something? Or, you know not, you know, take me off of a certain path. Or I mean, there've been a lot of people whose jobs have been impacted because of, because of seizures.
20:08
Um, and I, I took that advice, um, for a while, but uh, a number of years later, I guess sort of went the opposite way. I'm like I have to talk about this. If we don't talk about it, then we're never going to be able to eliminate the stigma. Um, so, uh, I'm just open about it. I'm as open about it as I can be, um, and share it with as many people as I can. And what I find is, when I do that, uh, more and more people like, well, well, I know someone, I know someone, I know. So, actually, you know my, my son. You know, we have made some incredible connections with people by being, by sharing that information, right, um, you know, holding it inside is just it's not gonna. It's not gonna help any.
Tim Reitsma 20:56
It doesn't. It helps no one, not even yourself or me, if I hold it in, it helps no one. Somebody reached out to me recently and a fan of the podcast knows I live with Crohn's. They sent me a note and said hey, I'm going through a diagnosis. We think it's Crohn's. Can we talk Absolutely? Imagine I didn't share or you didn't share about having seizures. How could you have, you couldn't have those conversations? How did that feel to for years, just not share how? How did that affect you?
Jon Tuteur 21:34
I mean there were still. There were still people in my life, of course that knew um. You know, two of my first three seizures happened at work. So people at work did know and we're we're very supportive. I was very lucky to work at a, uh, a company that um just cared so much about their people and we're not, you know, did not discriminate for you know, about anything at all. In fact, if anything, they encouraged me to do more Um, uh, and you know they were very supportive of the cause.
22:09
Um, Accenture, um was the company that I worked for at the time. Um, so, uh, anyone listening from Accenture, I still love you guys, um, uh, so that was that was great Um. But you know, one of one of the interesting things um along the way was sort of related to this was was dating, because when, when I was 30 and I had my first surgery, I I didn't, you know I was, I wasn't married, I wasn't dating anyone Um, anyone, um, and so having having that conversation and when to have that conversation and what the reaction is going to be, was always an interesting um experience as well. But for the most part, I was. I was lucky that I didn't experience firsthand, um. You know much discrimination um, but I know many people who have sadly it's.
Tim Reitsma 23:02
It's sharing a very vulnerable piece of yourself and sometimes we're kind of forced to share when things happen in the workplace or happen when we're out with friends and, like you said, you've had two seizures at the workplace. You can't hide that it's happening and it needs to have a conversation and I'm so grateful that your employer at the time was accommodating, because I know that's not the case as we're recording this who is fearful to share because they know, based on the history of their employer, that their employer will not care, will not put in any accommodations and will likely get let go if they bring it up. So there's so much fear and, like you said, john up, so there's so much fear and, like you said, john, we need to talk about this, this image of a revolt almost in the workplace, where we're just saying you know what? This is me, this is my normal, I didn't choose to live with fill in the blank, so accept me. And it's hard, isn't it, when we think about advocacy yeah, yeah, and you know that's as I mentioned earlier.
Jon Tuteur 24:25
You know, I've changed the title of my book, has changed multiple times and, from what I'm told, that's fairly common, um, but the word authenticity is is very intentional, um, you know, how do we live authentically if we're not talking about the things that impact us the most, that have, uh, you know, that impact our families and one around us, that you know, so that that was a big part of it for me, right, it wasn't living authentically by hiding it. Um, so, yes, I am a big believer we have to have these kinds of conversations, uh, at work, um, wherever like 100% wrong.
Tim Reitsma 25:06
I was doing a Google search earlier before recording this just to see the results that come up and yeah, there's results from very recent in chat rooms. But I also know in some countries and I've heard this also firsthand in some countries that there's still common practice where if you have a seizure, that you're brought to a spiritual practitioner or a church or whatever it is to get examined rather than a doctor. And yeah, that to me is scary.
Jon Tuteur 25:57
Yeah, very scary.
Tim Reitsma 25:59
We talk about here in Invisible, in invisible condition. We talk a lot about self-advocacy because I think you know, we there's there's a lot of shame, there's a lot of fear we have to overcome and I believe that is that that's all part of our journey of advocacy. How did you advocate for yourself? You, you know you've had seizures in the workplace, multiple seizures, successful surgeries. Talk to us a little bit about your journey of self-advocacy.
Jon Tuteur 26:31
I always giving back was always a value of mine and you know I credit my parents for that because they were a great role model, um, in terms of what they did in in the community, um, but I, I was looking for what was going to make me the most passionate, because I, you know, I tried a bunch of different causes and I, you know, I just hadn't found it yet.
26:58
And once I was diagnosed again, this is the power of positivity and just where my mind went, like I want to get involved in this cause. Right, I'm not going to spend my energy on feeling sorry for myself or worrying about what could possibly happen. I'm going to go try and help find a cure, help people who are going through this live better lives. And so I got involved with the Epilepsy Foundation of America, you know, right after I was diagnosed, and have done countless things for them and Cure Epilepsy Citizens. United for Research in Epilepsy is another phenomenal epilepsy foundation. United for Research in Epilepsy is another phenomenal epilepsy foundation. They're specifically focused on research and finding a cure, whereas the Epilepsy Foundation does a lot of other things. But two wonderful organizations that I've been lucky enough to do work with.
27:53
There were times where I'd work a long day at at work and then I would drive out to the epilepsy foundation's offices and spend three more hours with them. Um, uh, so yeah it, that was. That was really important to me and, um, you know, hopefully, uh, it made a difference somewhere along the line. Um, but from an advocacy standpoint, it was hard for me to not be involved and advocate for myself. I really needed to dive into it.
Tim Reitsma 28:29
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29:18
Well, I know for many, finding their voice is hard. Overcoming that fear and that shame is maybe never goes away. It's something that is always there and for you, what I'm hearing is it was okay, I'm diagnosed right. You hid it for a while and then stepped out of that hiding into. Well, this is what I live with joined and supported amazing organizations. For someone who is struggling to maybe find their words, or find their voice and advocate for themselves. What would you say to someone?
Jon Tuteur 30:01
themselves. What would you say to someone? Yeah, there's, there's just so much power in community and connection with people that are going through the same thing that you are. Um, there are millions of people on this planet that have epilepsy. Um, and when I meet people, it's so often like, well, we don't, I don't know. Well, one in 26 people in the United States have epilepsy.
30:23
There's a pretty good chance that you know someone. They just don't talk about it, um, but I, you know, I found that the more I've talked about it, whether it's on social media or, you know, through podcasts or um articles I've written, um, the more people that reach out to me and the more people that feel comfortable talking about it and sharing their stories. I love it when someone reaches out to me out of the blue, who I don't know. Um, you know if I've posted something on LinkedIn and you know it's a third connection, so it's a colleague of a colleague of a colleague. That's. That's just so rewarding, um, and while I thought I was the only one, you know you get that, or, uh, you know I, I just didn't. I didn't know that there were even some of these options out there.
31:11
Um, so, yeah, just finding your voice around. It is is so important. Um, the shame, yeah, I mean of course we're. We're all going to deal with that, we're all human. Um, but again, I I just really try to put that aside and focus on the, the gifts in it. And I know that's a that's a hard thing for some people to say or to hear, um, but to me I mean there are, there are gifts in all of these things. It's just how do we figure out what they are? I really try to put the shame aside.
Tim Reitsma 31:47
It's important right. It's important to acknowledge that emotion, that feeling of shame and fear and stepping out into the world and, whether it's connecting, like you said, with a complete stranger, or if somebody's listening and just wants to tell their story, or struggling, reach out.
32:11
You know John is a phenomenal resource. I'm here to help and there's so much power in that story and I hear this on almost every episode that I've recorded almost 30 episodes now. It's taking almost taking that first step. And but practice too. You know somebody given advice of. You know jot right down what you want to say, what and why you want to say it. You know understand the why behind the what. Practice in the mirror, practice with a good friend, because maybe you want to say it. Understand the why behind the what. Practice in the mirror, practice with a good friend, because maybe you need to talk to that employer, maybe they are more empathetic than we think. I would hope so. But you became very public of like, hey, I live with epilepsy to the point where, hey, I'm going to write a book, what was the motivation to write a book? And when somebody not if somebody, but when somebody picks up your book, what are they going to hear? What's that story that they're going to leave with?
Jon Tuteur 33:20
Yeah, as I had. I shared with you. This was not a bucket list item for me. I always enjoyed English in school as a subject matter and I've always loved books, but writing my own book was never a thought. But when you spend over 40 days and nights in the hospital, the mind tends to wander, and I just started taking notes on all these crazy things that had happened over the previous 15-ish years. And when I finally got out of the hospital I went to see a good friend who's in the literary world and I ran the idea by him and he's I love. It Connected me with some other people in the literary world and next thing I know I've got an Two and a half years later. Here we are.
34:25
It is certainly not writing a book is not for the faint of heart by any illness, but it's been such an incredible learning experience. And I just have to give a quick shout out to my editor, tom Ketting, who is just phenomenal. I just love him to death. A lot of people say you're going to hate your editor by the time you're done because they push you so hard, but he's, he's uh, I barely knew when we started and he's going to be a lifelong friend. Um, so it's been. It's been a really fun process.
Tim Reitsma 34:58
I'm taking a note. Well, we'll definitely give him a shout out in. Uh, in the show notes as well. Uh, I've always you know maybe it is a bucket list item for me, and I have now publicized this on numerous podcasts that I'd want to write a book. I think I've got three ideas in the works. One my wife and I have actually started and I'm going to put you on the spot here, and it's a book around etiquette what not to say to someone who has disclosed or has told you about their invisible condition. If there is something that maybe you've heard or that you would advise somebody to, just don't say, what would that be?
Jon Tuteur 35:42
I love this question and for the listeners, you didn't prep me on this one. I love this question and, for the listeners, you didn't prep me on this one. And I say that because what I'm going to reference I'm a huge Brene Brown fan and she has a video on the distinction between empathy and sympathy, and one of the things she talks about in there is the worst thing you can say to someone who's down in the hole and is really in a bad place is at least so. Like if someone says to you you know, my marriage broke up. Well, at least you got married. Right Like uh disease. Well, at least you're able to eat today, or whatever, it might be right that. So that that's why you know that one just has stuck with me forever, because nothing, nothing good can come from. Whatever's going to follow, at least right like um, I just had a miscarriage. Well, at least you got pregnant, how is that person going to feel?
Tim Reitsma 36:46
right. Yeah, at least you could try again, or at least it's not worse. Or name a quote-unquote worse condition. Or yeah, maybe the book is just one page. Just don't say anything that starts with at least that's. Oh, man, I could. You know I cringe because I'm sure I've said it and I know I've said it. Words flow often quicker than we can catch them. What I say to people who have asked what do I do? What do I say? I don't know what to say. Just don't say anything. You don't need to say anything. You don't need to be the hero of the story, you don't need to have something profound to offer by you just listening and nodding and saying thank you for trusting me, man, that's enough.
Jon Tuteur 37:39
Totally. I couldn't agree more. I think in those moments we feel like we have to do something or solve it or make the other person feel better. But that's that's serving us, that's not serving them Right. And yeah, in that, in those moments, most of us, all we really want is for you to feel like you're, you know you're supporting me, not not trying to fix me, because whatever that is, it ain't going to be fixed like that, right, there's nothing that could possibly said that that's going to fix that. But if you say I'm, I'm, I hear you, I support you, I love you, I'm, you know, do everything in a kit, you know I'm sorry, you know. Do everything in a. You know I'm sorry, you know. That's sort of everyone's initial reaction and that doesn't offend me by any means. I mean I've like you, I've said at least before I also say I'm sorry, but I think there's there's some more powerful things you can do or say in those moments. Then you know I'm sorry, um being with the person.
Tim Reitsma 38:48
I said on a. I was a on a podcast recently and what I said was, if you don't know what to say, say that thanks for trusting me with this. I don't know what to say, but I'm here for you. Simple, uh, at least you know, at least. Hey, john, you've had uh, 500 seizures at least it wasn't 600. But you've got 50 wolves in your head. At least it wasn't 30. At least it wasn't 30. Uh, that would be, that'd be interesting. That'd be a you know, but if it was, maybe it would be a difference.
39:25
Right now, yeah, we could spiral in in some strange and obscure ways if we just focus on the at least, and I could, I could almost see maybe we should do this, just record just a fun uh podcast one day is just how can we one up each other's at least? Oh, I'm in, I'm in. Yeah, oh, that would be. That'd be fun to just have even just 10 people and just go around and just one up each other's at least. I wonder where we would end. Okay, you know, I'm gonna take a note of this because I can see that in the works. That'd be some fun, because when we talk about invisible conditions, we we got to have some some fun with it. There's humor in it there's. We talk about invisible conditions. We got to have some fun with it. There's humor in it there's.
40:08
You know, as you said, right, you got to look at there's multiple sides to being diagnosed with something and for you it was okay. I am going to look at this from a positive side and how can I make a difference? And you know, I asked this to all the s as we wrap up. We're here, I'm here with Invisible Condition to end the stigma. How are we going to do this? How are we going to, aside from releasing a podcast a week, what else comes to mind? How are we going to end the stigma of invisible conditions?
Jon Tuteur 40:43
Continuing to talk about it, as we've already addressed, is such a big one, I think, in writing about it. I love that you're thinking about writing a book. I don't know if one of those three is around your condition, but, again, this is one of my favorite things to talk about around human connection. My belief is that the biggest source of disconnection is assumptions, and we all do it right. It's, it's innate. But when we make assumptions, a lot of times we're wrong. Right because we're we're making the assumption based on our perspective of the world. And so I think to answer that question don't assume, get curious, ask the person what it's like living with epilepsy, what it's like living with Crohn's, what it's like living with whatever, and learn as much as you can about it, because it's you know, just, it's sort of this black box and it's you have assumptions about what it is, just because you saw someone have a seizure in the subway or you had a friend who had Crohn's disease. Right, get curious is my biggest thing. Like, really try to understand what it's like.
42:03
And I have a chapter in my book that talks about what it feels like to have a seizure, and I did that intentionally because people can, a lot of people, I think, have seen someone have a tonic-clonic seizure or a grand mal seizure. But what does it feel like to the person who's having it? And, by the way, there's over 30 types of seizures. Most people think a grand mal seizure or tonic-clonic seizure is the only type. There's over 30 types of seizures. Most people think, you know, a grand mal seizure, a tonic-clonic seizure is the only type. There's over 30. But what is that experience like? Like what does it feel like to have Crohn's disease? Like what are you actually going through? Like the feelings and the emotions I think are so important to express and to understand, because otherwise you can't fully understand what it's like, what that person's going through.
Tim Reitsma 42:50
I love that you went there. You're speaking my language. Curiosity, authenticity. What you know, before we wrap up real quick, is what does it feel like to have a seizure?
Jon Tuteur 43:02
Yeah, so I have two types. So tonic-clonic again grand mal, what people typically think of that. You lose consciousness, so I'm not feeling anything during it, but after, very sore because your muscles are clenching, your, your teeth are clenching Like I would just soar in places that I never expected to be, and you're foggy, brain foggy, um, it really takes a couple of days to recover from it. I the the analogy I use in the book is it's like writing with a dull pencil, right, and you start writing with a dull pencil, sometimes it's hard to read what it is that you're writing. And that's sort of what it's like is there are certain things that typically are fairly easy to do that in that post-ictal state, the post-seizure state, are just harder because your brain is working so hard and this electrical storm is going on and, depending upon your origination point, for me my temporal lobe, which is where your memory functions are, where a lot of your executive functions, live Memory, has a huge impact. I really struggled with memory after seizures. So the other type of seizure I have is what's called focal aware seizures. So I'm actually awake and I know what's happening and there's three parts to it.
44:44
I get this really bad smell, which I describe it in the book. I'm not going to take the time now to describe it, because it's a hard one to describe, but it's a really nauseating smell and then it's like this movie is playing in my head. I'm watching a scene from my life that happened previously. It's like a flashback. At first I called it deja vu, but it's not. I started really digging into, okay, what's the definition of deja vu versus flashback. It's really a flashback. I'm watching a scene from my life that has already happened. While I'm standing there there like it's just wild, and then, um, I get really sweaty, like on my hairline, um, and and really nauseous, and then the movie projector turns off and the seizure's over, like I would. I would bet that whoever's listening to this that's probably really shocking, right? Really, that's what happens.
Tim Reitsma 45:47
Yes, I'm for those who are listening and not watching. My jaws open a little bit, I wouldn't. That's where curiosity comes in. If there's over 30 types of seizures I think you think of seizure as portrayed in the movies or you know, as on shows or what you might read in a book but to have part of your life play that, wow Okay, I'm kind of a loss for words and wow. Thank you, john, for giving us a glimpse into your life. And three surgeries later, I know you're doing so much better. And with this surgery this latest one, hopefully there's more than a 10-year runway before another seizure happens. For those who are listening. There's a lot to learn with every condition and, john, I'm just grateful that our paths crossed, that we connected. You've got your book coming out. I can't wait to read it. When is it coming out? Where are people going to find it? I know we're going to link it in the show notes and we'll help spread the word when it's out, but where could people even reach you?
Jon Tuteur 47:04
Yeah, so the book will be available on your, your typical site, so Amazon, barnes and Noble. Um, it's not available yet. Um, it's looking like July ish. Um, I'll get a firm date in the next couple of weeks, um, but sometime in the summer. I think is is a is a fair estimate. Um, uh, people can reach me. The best way to reach me is really through my LinkedIn. Um, my handle is Jonathan dash, tutor. Um, and I say this and I mean this. Um, and I've had lots of people reach out to me. But, please, if you're going through this, if you have questions, you know someone, you want to talk to someone. I, I promise you I will respond and I want to help. I. There have been so many people that have reached out to me in the past two and a half years. It's a joy for me. I wish that I had that when I was going through it myself. So please don't hesitate to reach out.
Tim Reitsma 48:04
And, yeah, linkedin, that's the best place to get me. Well, there you go, listeners. I'll have all the contacts in the show notes as well, so no worries on that. So please head to invisibleconditioncom and to this specific episode, and you'll see John's contact information there. John, it's a pleasure to have you on.
48:26
And for those who are listening, if you want to help support, end the stigma of invisible conditions, there's a couple of ways you can do that. You could share this episode. You can share all the episodes out with friends, family, your coworkers, strangers, airdrop it to whoever is in your vicinity. That will help Subscribe to the newsletter. We release a newsletter every two to three weeks and that's growing exponentially. So thank you if you are subscribed Right there on the newsletter. We just talk a little bit about what's happening with Invisible Condition, as well as update you on the episodes that are being released and all the content we are pushing out. And thirdly, if you have the means, please donate donations, go to go to shows like this and help produce shows like this. So we are a non-profit and we are pursuing charity status and so here here in canada, so your donations go a long ways. John, it's been a pleasure. Uh, yeah, we. I'm sure we'll connect again, especially when your book is out. Let's chat again then, if not before.
49:28
And yeah, thanks again for joining us Awesome.
Jon Tuteur 49:31
Thank you, Tim. I really enjoyed this. This was great.
Tim Reitsma 49:34
And for those who are listening. I hope you have a good one.
