Self-advocate Tim Ulmer shares his journey with epilepsy, and talks about his show Epilepsy Gangster.
Tim Ulmer is an epilepsy self-advocate, and author, and the creator and producer of Epilepsy Gangster. Tim also facilitates the prominent support group that he started over a decade ago. He’s been a moderator-writer for Health Union’s EpilepsyDisease.com where people can read his columns about living with epilepsy (at no charge). He is also the author of the book Involuntary MISSION: In China with a Thorn in the Flesh. In 2024, for his work on Epilepsy Gangster, he was a finalist in Health Union’s Social Awareness Awards in the category of “Creative Contributor”, and the international Invisible Disabilities Association has selected him to be its first Ambassador who is epileptic.
For more about Tim’s work, visit: epilepsygangster.com
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Note: the following transcription was automatically generated. Some imperfections may exist.
HACKIE REITMAN, MD (HR):
Hi, I’m Dr Hackie Reitman, welcome to another episode of Exploring Different Brains. Today. We’re going to have some fun. We’ve got Tim Ulmer, and Tim has created the Epilepsy Gangster, which we’re going to learn all about. Tim, welcome to Different Brains.
TIM ULMER (TU):
Thank you very much for having me Hackie.
HR:
Now, why don’t you introduce yourself properly, tell us about you – tell our audience.
TU:
Well, I have been epileptic since the age of two. It was an injury, and I’m now 61 and so epilepsy has been a factor in every decision of my life, from career to changing to choice of schools, to whether or not I could be a good husband, and whether or not I’d be a good father. I’m happily married with a blossoming 14 year old girl who already has her plant and set on. John Hopkins, so I think I’m doing okay.
HR:
Congratulations. That’s great. Tell us how you first got diagnosed, what happened, what led up to this?
TU:
As I say it, my very first memory of life as I can put together, is falling down a wooden staircase at the age of two, and when I soon afterwards, my parents were very close to me, very good teacher. They were actually teachers, and mom was a guidance counselor, so they knew abnormalities and they noticed what was would now today be called petit mal seizure, or absence seizures. And as I was growing up, I was telling them about auras that I had, so they knew something was wrong and they fit. They officially got me diagnosed at the age of seven, and I have been on medication ever since.
HR:
What are some of the other treatments you’ve had and other medications, and how long did it take to get something that really worked for you?
TU:
I would say it took 57 years to get something that really worked for me. That was in 2020 I got prescribed a new drug called xcopri by SK life science, and my lifetime average had been seizure every three weeks with and it had been as frequent as every 8 to 10 days in a decade ago.
HR:
And tell us, tell our audience, what your seizures were like?
TU:
Well, they would be anywhere from I’d start being drunk. I’d appear drunk, smacking my lips, studying my hand, and I might even start to undress. Oh, but co workers and family never let me get beyond taking off my shoes, but the tendency was there, and there were times I have what would was then called psycho motor, where. Um, I was able to keep functioning with what I was doing, but I would not be aware of it. And that actually terrified me, because in 1990 I was driving to work in Chicago on an expressway, and when I had a seizure, and the next thing I know, I am about two miles from there, and I’m driving through a parking garage of a complex where I had been working five years earlier. And then that caused such a shock that I went into another seizure, and when I came out of that, I was in the parking lot of where I was working, and it meant that to have gotten there, I drove through at least eight intersections with stop lights and gotten onto a Chicago expressway for two miles. So in some ways, I don’t want to say that I’m glad that I had something like grand mall, but that’s something that I’m not experienced with, but nevertheless something that was kind of beneficial, or that I saw advantageous to those people, is their actions stopped, whereas I was able to keep on going, and Illinois had just passed a law that any hit and run drivers would be prosecuted as manslaughter, and when I came out of that seizure, I was terrified. I went to a Dunkin Donuts, used the pay phone to call a friend who had connections with the Chicago Police Department, and I said, Hey, have there been any hit and run accidents reported in the last half hour? He told me stay where I was at he’d find out. And I have never been more terrified in my life than that half half hour waiting for him to call back at the pay phone and not knowing if I might have killed somebody,
HR:
What a story.
TU:
On the lighter side there, 15 years later, on the lighter side, if you want to call it that, I became a TV news producer, and on the way to a story about five, five minutes away, my photographer and driver thought that I fell asleep, and he didn’t think anything of it. And the next, the first thing I know, I’m holding a microphone interviewing somebody who I don’t know who it is. And I thought I tried to wrap up my quest, recover my questioning, and get to a point that we could stop. Then I whispered to my cameraman, hey, I had a seizure. I did I just do any who was that and Did I do anything crazy? Turned out I had gotten there. I had helped him set up the old fashioned three quarter inch cameras, the lighting, the microphone, met the three, the three people I was going to interview, tell discuss with them what I was going to interview, ask each one of them and started the first interview all without any awareness of it.
HR:
Well, you’re good. Tim, tell us how your voice is occasionally affected by the treatments.
TU:
Well before getting this medication, I have about in 2013 my epileptologist can got me to sold on trying out for a vagus nerve stimulator. And for people that don’t know about there’s the vagus nerve in the neck, and it’s a pipeline into the brain, and I have a little implant that’s about the size of three half dollars, stacked on top of each other right here, and wires are running right underneath my skin, and they’re attached to the vagus nerve. It’s like a pacemaker for the brain, and it’s every five minutes, it sends a 30 second electric shock to the to that but since it’s right next to the voice box, it interferes with my larynx. I can’t this is a this doesn’t want to show this is a magnet that I carry on my belt in case I need it. If I feel an aura coming on, I tap the device right now, I just started it. It fired, and whether or not it affects my voice depends on the power that the epileptologist has set. Maybe how, if my neck is down on my throat and just the position I’m sitting, that all kind of is a factor. And when I first got the thing, people told me that, gosh, you sound like somebody from the movies. And I said, Well, tell me who. And they all came anyone that ventured a guess always came back with Marlon Brando, the Godfather. Don Corleone.
HR:
I thought you’re doing a great invitation. I’ll tell you what.
TU:
Well, that’s what these guys thought. They wondered, why would I be doing why? Why was I doing a Marlon Brando invitation imitation when I’m trying to have a business meeting.
HR:
Wow, you’ve become an outspoken self advocate for the epilepsy community. What led you to that?
TU:
Well, my parents raised me to be a good boy scout, and the idea of being a good citizen, and they had me convinced I wanted to give back more than I took. I wanted to do something colossal that for other people. And coming from a military family, I thought best way I could do it was to have a career in the Navy. I saw myself when I was 18 as being Lieutenant Pete Maverick Mitchell in Top Gun, and when the Navy told me I was handicapped, and so Whoa, no one had ever called me handicapped before because I was it hadn’t stopped me from doing anything. And so I got involved in politics then, and happened to be elected to the 1980 Republican National Convention at the age of 20, I had not yet had a chance to vote for a candidate before I had the chance to nominate a candidate. Ultimately, in Illinois, the department of rehab, rehabilitation services paid me to go back, paid for me to go back to college. I studied TV production, and even there, that was not going to be perfect, but during those years, I had started as a being a director of the Epilepsy Foundation of Chicago’s support epilepsy support groups as a volunteer, and so I’d be a that made me aware, we’re talking 1990-91 made me aware of the value of support groups. And when I moved to Atlanta in 2004 Atlanta had no support groups, none at all. So I started my own, and I’ve seen, I’ve realized the importance, just how important it is for people to be able to talk about their problems and know that they’re not alone. And also, since I studied television and production. I know how the brain responds to imagery and how people learn from what they see on TV, and an incredible number of people that would accept my suggestions at the support group meeting, but they needed to have imagery. They needed to see it being done. And so friend who was trying to start another inspirational TV network that did not get carried on Roku, she asked me if I’d wanted to do a show about epilepsy. And I, after thinking it over, I decided, yeah, let’s do it. And my premise is, for those stubborn people out there that want to that think they’re alone, I have found happy, productive and socially active people who are have are doing so despite epilepsy. That’s the purpose of the show. It’s not to be a support group. It’s for the people going to the support group so they can see, hey, I’ve there’s some merit to what I’m trying to tell them in the meetings.
HR:
That’s great. That is great. What are your future plans?
TU:
Well, I’m hoping that I would like to be able to continue doing gangster as. Full time position as it is right now, I am, I actually work as a substitute teacher when, whenever I can get a job near me, within walking distance to pay for my show. But I have fun doing it. I want to speak. I I take every opportunity I can to speak, because I know people. I know how people try to be strong, and they can. No one can be Superman all the time. They’ve got to break down and talk to somebody, and they need examples. And so I have, it’s my utmost joy to be able to put this on for four years or five years I was after getting my degree, I got to be a local TV news producer, as I said. And I loved working with new I loved working with TV production, and this has been a way I’ve been able to I’ve been able to use my skills and at the same time, help people.
HR:
The example you set for people who have epilepsy are just like you and me, and they can do whatever they want to do, and like anything else we all need, whatever help we need with whatever we you know, whatever we need. So if I’m diabetic, I carry on, and I have that. If I’m heart disease, I carry on. I do this. And you can do whatever you want to do, and the more worthwhile something it is you want to do, and the more it seems out of reach. Society is a little bit funny, because they’ll try to discourage you, you know? They’ll say, Come on, Tim, you can’t do that. You What are you going to try to do that for? You can’t do that. You can’t make the big difference. And now we turn around and you’re making the difference, and you’re doing it, and you’re doing TV show, and you’re writing, and you’re doing all this great stuff. I salute you. It’s good stuff, and you set a good example and encourage other people to do it as well.
TU:
Well. Thank you very much, Hackie, I would say that I am have actually come to help people and serve my country more with epilepsy than what I originally intended when I was 18 by going by wanting to go to the US Navy Academy in 2002 to 2004 I had the chance to go teach English in China, wow, and I was teaching at a university conversational English to educators coming back for their masters and PhDs and things were fine, but then and they knew I came from being a TV producer, and one day I had a seizure in class. I just leaned back against the classroom wall and slid down to the floor and just sitting there, and when I came out of it, I can talk for coherently for maybe 15 minutes without any awareness of it. And it’s not until 30 minutes that I am 100% back online and aware of what I’m doing and saying. And it was in my contract not to discuss religion with staff, student or faculty, or I would be fired immediately and sent home at my own expense. And when I started to come out of that seizure, students said, Well, why? Why did you leave a job in the United States to come to a country where you didn’t know the language and yet you have this sickness? And I said, I without knowing what I was saying, I just said I wasn’t afraid, because God had saved my life in five car accidents. So I knew I could get killed just as easily walking across the street in front of your university as I could painting the wall in my living room. So why not take the job when it was offered to me? And because I asked, because I mentioned God over there that that in 2002 they could be sent to prison for talking religion, wow, and because I mentioned it, then I started having people elbow me. Hey. Would you have lunch with me? Would you have dinner with me? I got questions I want to ask. I have not been to a seminary or anything like that. My knowledge was dumb. I hated talking to people about religion, but I I had lots of people ask me about Christianity and about religion, and I knew enough, just from my childhood rearing, that I was able to answer their base, basic questions. They did not need Billy grams. They weren’t they weren’t ready to comprehend Billy Graham or Andy Stanley or people like that, and but I was able to give them some help. And I like to think I’m kind of the I was, kind of the proverbial farmer who threw grain out on the trail in the on good soil. Because when I was there, there were three there were 3 million underground Christians. Now there’s 150 million. And I’d like to think maybe…
HR:
You had a little something to do with that.
TU:
And one of my students was an associate law professor at the number one law school in Shanghai. I got, I got fired because of the seizure, and I went to law school, and I became friends with an associate professor. He asked me, he told told me that he was going to be teaching a course on Western law the following month or the following semester, and he asked me, Did you bring is Moses responsible for Western law. I said, You’re right. Said most people give him credit with the idea of a judicial branch of government, and he’s so important that there’s carvings of him holding the 10 Commandments on our Supreme Court building. And he said, Well, did you bring Bible to China? I said, Yeah. He said, Could I borrow Bible to be read about Moses and China, at the time, produced 200 million Bibles a year, but it’s contraband for their own citizens to have it. I don’t know how what it is nowadays, but anyhow, we had to do this like a drug exchange. The next day, we accidentally picked up each other’s bag, my bag, had the Bible, and five weeks later, he said, You have to have Bible back. I want to learn it about Jesus now. And so this was, this guy was an associate professor at the number one university, and I had a I had a vice president of another university who then became a president of a university. So I was continually being put in front of affluent people, influential people. And so I am confident that it was meant for me to have epilepsy, and I’ve used it. I’ve been as such. I’ve been able to serve people more than Lieutenant Pete Maverick Mitchell.
HR:
And what advice would you have for people out there who are just beginning their journey with epilepsy?
TU:
I would say, be patient. It takes, it takes two years for, roughly, for people to get an idea of what their limitations are. There’s loads and loads and loads of information on the internet, which my parents didn’t have raising me, but there’s so much information that if you do not know what is pertinent to your problem, you’re going to feel suffocated and you’re going To feel even more miserable. Be patient, find out what with with an epileptologist, not a neurologist, but an epileptologist, a neurologist who specializes in epilepsy, find out from them just what your condition is. There’s 40 variations of seizures. When I got diagnosed, there was three pet it mall, psychomotor and grand Mall. Now there’s 40 variations. Find out what your particular needs are, and then find you got to be smart enough to know what you don’t know. Then, then you can proceed with your epileptologist to make a plan. And everybody’s life, everybody’s body is different. Each seizure is as unique as their thumbprint. And so just because Charlie Smith is doing good. It with Dilantin doesn’t mean that Tom Tom Jones is going to do good with it. So don’t be discouraged. It’s going to take trial and error. It’s going to take that bit something that really helped me in in my parents were doing this at a time when, before there were epileptologist I was, I’ll admit I was, like, raised in kind of like the Iron Age, if you want to think about it. Now nowadays, epilepsy might be in the computer age, just starting the space age, but my mom kept a journal describing every seizure I had when I had it what I was doing at the time. And I would say, on top of that, I’ve learned to keep a diet, make note of what I had eaten in the last 48 hours. Because once you once you’re able to categorize your seizures like that, you can show it to the neuro the epileptologist, and then you that is learning what your triggers are. When you start to see the recognize the triggers, then you know what to avoid. Your seizures can come down.
HR:
Tim, could you give us an example of some of the stories that have been shared on your show?
TU:
Well, some, something I’m very proud of is I got a national advocate, big 10 Conference football, Head Football Coach Jerry kill he had his very first seizure in 2011 with 20 seconds to go on a game that was being watched nationwide by half a million people on ESPN, he had a grand mal seizure on the sidelines interrupted the game and he he shared with me about how he had to step out of football, made, made the choice to get out, but he recuperated. He reinvented the new normal, and he went back to coaching, coaching football again, which he never thought he’d do, but he got the New Mexico State University football team into the Southwest bowl, and this year he’s at Vanderbilt. So he’s come back. He’s a good example of how to reinvent yourself in a crisis. Epilepsy does not have to mean the end. And I also began this season with a violinist, a very renowned violinist named Martha Curtis. And back in the beginning of the Iron Age of epilepsy surgery, she had a third of her right temporal lobe removed. Not only did it run the risk of killing her, but if she survived, made ran the risk that she would not understand what music was. Turned out she had the surgery three years later, Leslie Stahl interviewed her on 60 minutes about the success and she is able to memorize music better than she ever did before. Not just play it better, but she’s able to memorize music better than before.
HR:
What do you hope people get from Epilepsy Gangster and from your advocacy?
TU:
I don’t expect that every feature I do is going to hit a nerve with every viewer, but I am out to give a variety of backgrounds, a variety of ages, a variety of regions, and one day, people are going to watch Tory Robinson in London, or they’ll watch Jerry Kill now at Vanderbilt, or they will watch miles Levin in Hollywood, and they’ll say, I could be that person too. I don’t have to be sitting on this sofa watching tim’s show I could be doing. I could be doing that. So that’s what I want people to get from my show.
HR:
If you had to pick one thing you wish all people with epilepsy and their families knew about that perhaps they don’t — what would be the one thing you would emphasize?
TU:
Well, I’ve already said quite a bit about the importance of journaling and being patient, but I would I also like people to know that it’s got nothing at all to do with intelligence. You. The greatest minds of history were epileptic, Sir Isaac, Newton, Albert, Einstein, Julius Caesar, Alexander, the great Napoleon, Socrates, and some people believe Saint Paul was epileptic the thorn in the thorny in the flesh that he referred to and for every new discovery, every new invention, 10 more come about. So if you think about the contributions of all those people over the course of mankind, I would say that new numerologist might agree with me that people with epilepsy are responsible for maybe 97% of the achievements of mankind.
HR:
Wow. How can people learn more about you?
TU:
They they can visit my website for epilepsy gangster it’s just one word, epilepsygangster.com and I am also a columnist for health union. And it’s a website called epilepsydisease.com they can read my columns, and I’m also an ambassador to the invisible disabilities Association in Denver, and they can read about me at all those places. I’ve also written a book about living with epilepsy in in in China, and called they can get it on Amazon. It’s called “Involuntary Mission: in China with the Thorn in the Flesh”.
HR:
What can we expect going forward from Epilepsy Gangster?
TU:
Well, we have just wrapped up season three. I’m always looking for good stories. I’m going to be preparing season four. As I say, I need to learn about people who are happy, productive and socially active. I know you’re from Florida. One of my guests is that I’m featuring is Judge Monique Scott from the 13th circuit in Florida, and she wanted to serve people by being an FBI agent. Turns out the FBI put her all through training, she was number one in her class, but then, because of her epilepsy, at the end, they pulled the rug out from under her. Then she tried to went to the Tampa Police Academy. Did the same. They did the same trick to her. She wound up becoming an elementary school teacher, but at night, she was studying law. Eventually, she became a prosecutor, and in 2022 she was elected circuit court judge. So she is getting to serve people just the way she’d always wanted to as a child. So just be people need to realize that you don’t just go from point A to point D, as in A, B, C, D, maybe you go from point A to point E to point M to point D. Life, no life is perfect, or it’s not perfect as you envision. So be creative. Be patient when you’re told no, be paid and find out. Find out what you can do, how you can apply your talents to somebody who’s less fortunate than you.
HR:
Well, on that positive note. Tim Ulmer, great self advocate, you’ve given us all inspiration today. We’ve learned a lot about epilepsy, but we’ve also learned a lot about the importance of the human spirit. As we all go forward and do what it is we want to try to do. Don’t take no for an answer and carry on. Tim Ulmer, thank you very much, and please stay in touch with us.
TU:
Thank you.
