Latest / Tom's Hirschsprung's Podcast / Episode 11 - Interview with Jonathan O'Konek @jonathanokonek

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Episode 11 - Interview with Jonathan O'Konek @jonathanokonek · Tom's Hirschsprung's Podcast

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You are listening to Tom's Hirshfrong's podcaps, where our provide a look into the
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remarkable experiences the most aspiring people around Hirshprng's disease and swore we did think and
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having a son O fine yah yah, Hello and welcome to episode eleven Holms
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Hirshprung's podcast. My guest this week is a lawyer or attorney if you're American.
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He is an Army veteran, a children's author, and a father to
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two children, one of which has Hirshprong's disease, and he promotes compassion,
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honesty, and problem solving in difficult challenges and fears. My guest is Jonaston.
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Welcome to the podcast. Well, thank you time for having me.
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It'screwed to be here. Thank you very much. I'd like to I mean,
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there's a lot of a lot of your story that that I'd love to
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get into and to chat about your time as an author, your time in
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the army, why you chose to become an author. But I'd love to
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start with you as as Jonathan, you as an individual and your your background
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to start with. So if you can give the listeners just a little bit
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on your background. Absolutely thank you for having me here today to talk about
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Hirshbring's disease. And before I even knew what Hirshpring's disease was, I was
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growing up in Wisconsin and then I ended up trying to joining the military.
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I went to a school Texas A and M University, where I was part
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of a core of kid that group, and I decided I should go to
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law school, and so as part of a deferment from the military, I
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went to law school in North Dakota, and after going and graduating, you
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know, passing the bar exam, I became an attorney. A lawyer.
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I don't know if it's a barrister or solicitors. It would be in England.
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But I ended up joining joining a group of individuals where we got stationed
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in Alaska, and I ended up deploying to Afghanistan. I became a prosecutor
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and I became a defense attorney. I did a number of different amazing things
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to help individuals, whether it be deployed or to help clients who were facing
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criminal action. And during this time, my lovely wife, Wendy, she
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was accompanying me the entire time, and she's also an attorney. And so
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what we ended up learning from the kind of the experience in the military was
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that there's always something going on in somebody else's life. So if you deploy
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to Afghanistan, for instance, you can see that life is in some ways
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people are struggling over there. If you represent clients who are in a court
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martial, people are are having you know, very serious issues in their life
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and they need somebody to represent them. And so all of those things kind
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of led me to want to write about some of these experiences. And then
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after I got out of the military, I ended up moving to North Dakota
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in Bismarck, and I work here as a prosecutor in Bismarck, North Dakota.
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And so my job now is, you know, to do criminal work
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to criminal law. But in my free time, in my personal capacity,
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I write books and write articles and write stories trying to help people overcome difficult
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circumstances, just because you know, throughout my life I've seen people who,
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uh, pretty much everybody I've ever met is going through something, you know,
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and they may it might not be visible, but it's something where I
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want to make sure to promote, you know, talking about those issues to
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helping individuals, helping people understand that we can each help each other get through
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the day, to make everybody's day a little bit better. Fantastic, fantastic.
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A couple of points to pick up on that when when going into the
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Army. Of nine people that have gone into the British Army, and they've
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all gone in for different reasons, whether it's sometimes it's it's more to go
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and help people, and mainly to help people sometimes that wants to do it
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out of sort of patriots and patriotism. What was your reason for going to
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the army. It initially started with nine to eleven September eleventh, when what
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happened out in New York. It also was my grandfather was in the military
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during World War Two. He was he found Italy, and so it was
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something where I thought it was important to give back to my country. But
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also it was some kind of a call to service actually after nine eletic context
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and did you still practice as a loyal whilst being in the army or did
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you sort of put that to one side. Yeah, So initially when I
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was going through the military school aspect of it, I was a cadet and
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so once I graduated from military school, and after I went to law school.
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Then I ended up practicing law. And the interesting thing about being a
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lawyer in the American military, because I've met some individuals from Commonwealth countries or
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from the UK, is that we are really embedded in the army with the
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troops, so you're with a brigade. And so when I went to deploy
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in Afghanistan in twenty eleven and twenty twelve, I was actually with an infantry
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brigade. So I'd been out of a law school probably a year, maybe
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maybe a little over a year, had basically been in the military about six
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to nine months, So I was twenty five twenty six years old going out.
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Ghannison didn't know exactly what I was what I was doing, but I
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learned on the job and I got to see what individuals did, both the
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military laws side of it, but also the you know, infantry side of
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it. And one of the things I got to do that was something that
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really broadened my perspectives was I actually was would drive around with individuals and we'd
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go out and we'd meet the local passionate people and I would pay out claims
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for individ you know, anybody who had had damage to their their crops,
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their their livestock, something that was caused by non combat related activities we'd end
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up paying money for. And so I got to really get embedded with some
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of the local culture, the passtun Wali culture. I got to really understand
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a different environment that I would never thought I would be able to do,
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got to learn a little bit of pastto and pashtune, and so it was
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just a really great experience where I think joining the military allowed me to have
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a understand a bigger picture, a great perspective on life than hadn't had I
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not. That's that's fantastic, that's fascinating, and I'm losing from that.
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You talk a little about in your books about compassion and honesty. Is that
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is that sort of heightened I guess from your time in the I think it's
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it's partly the military did that, and also when my son was you know,
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was diagnosed with Hurstprum's disease and he had his medical challenges and his surgeries.
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I think those two things came together, which is you know, you
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see in the military. What really the best part about being in the army
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was the people that you served with, they all wanted to be there.
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Uh, they all volunteered, they all joined to help the person disorder next
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to them, but also they wanted to do something bigger than themselves. And
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so I think when you're when when I was in the army, we when
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we deployed, we all were going there to try to do something to try
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to help people that were over there, to try to stop the insurgents from
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harming not only the local population, but also you know what obviously what started
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with with nine to eleven. And so after I even came back from Afghanistan,
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and after I was in the military for a period of time, I
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became a defense attorney. And what I was representing individual clients who were accused
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of crimes at courts martial. That let me see that you know, it
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wasn't just a one sided affair. You know, you have individuals who are
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accused of effects is they need legal representation and oftentimes you're the only person that
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they can they can turn to. And so between I guess the deploying to
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Afghanistans seeing kind of the hardships that people face over there, and the hardship
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soldiers face when they deploy and also just the hardships that soldiers face if they're
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accused of crimes, and then even everybody in the court process when they get
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witnesses victims. It shows you that you have to have compassion because everybody who
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comes to talk to you as an attorney is likely not having a good day.
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There's some sort of a dispute that they have. It's their life,
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their liberty, their property that they could lose, and so you have I
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feel that having a kind of a human touch being the more cognizant of the
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fact that you're not just there to provide legal advice. You're there to sometimes
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be the shoulder to cry, and you're the person to empathize with them.
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And so that led me to really feel that I can't be the only one
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that wants to be compassionate and try to, you know, try to reach
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other people. I can't be the only one that is face struggles. There's
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got to be other people. And I wanted to show two people who I
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felt likely had those same types of struggles that it was okay to talk about
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it, and it was okay to meet with others and try to find solutions
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to otherwise challenging problems. That's a good You did promote compassion, holosity,
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and treating people with dignity in your books. When did you find the inspiration
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to write? Was that sort of from you always being an avid writer or
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was that sort of later on in life? So yeah, that was something
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that came on relatively recently. So as lawyers, we write often, but
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what often happens is we write for work, so we don't we don't actually
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write for fun. And the way the lawyers write, it's not you're not
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writing a story. You're writing advocacy need driven, so you want you're asking
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a court to do something. What ended up really happening is when my son
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was when my wife was pregnant with our son. I I have a daughter
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who's a few years older, but my son, you know, my wife
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is prayed with my son. I had this feeling that something was going to
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go wrong. And I can't explain why. I just felt like something was
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going to go wrong, and I was just up late at night. I
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could not sleep, and so I started to write. The first thing I
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ever wrote was was a law review article about objections and how did how how
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you should strategically or tactically, you know, object or not object, and
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I did that just because I couldn't sleep, and so this was it was
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therapeutic for me to go out and and write. And then as happenstance,
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my son when he came and it was bomorn, you know, he it
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was. It was a great experience because he came out, uh, and
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it was just he had ten fingers, ten toes. He was crying when
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he came out. Everything was just wonderful. But of course that changed a
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day or so later, but at the time it was just absolutely a relief
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that that he was okay. And then what really got me into writing more
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personal stories. But the children's books that I've written that are inspired by my
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kids, and some of the things that I write for short stories for one
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of our local newspaper is really just when my my son was diagnosed with Hirschbronks
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disease. I'll never forget where I was, guys, I he he was,
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he was, he was born. It was like five or six o'clock
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at night, and I thought, well, why this is great. I
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ended up, you know, getting some sleep that that day, and that
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seemed unusual because I remember initially with my daughter, they never had they they
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didn't have a nursery, so you were with your your your child, you
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were feeding, you were changing my son was They were tooking back a lot,
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and I was like, okay, well that's that's unusual. I got
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some sleep that that first night, and then we were we were I remember
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he wasn't really eating, and I went to work and I had a I
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was meeting with some witnesses and my mom had called me and she was with
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my wife and my daughter at the hospital and she says, you need to
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stop what you're doing. You got to get to the hospital right now.
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There's something wrong with Seamus. They don't know what it is, but they're
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gonna fly them. They're going to life light them to Fargo, which is
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about three hours away from where I live in Bismarck in North Dakota. And
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I just I remember, wow, I just dropped everything. I went to
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the hospital and they had him on of hall sorts of different you know,
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tubes and things, and they didn't know what was going on, but he
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was vomiting bile and all of these sorts of things. And so that's all
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to say that my son got to take his first plane ride when he was
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about a day or two old. So he started earning his frequent Flyer miles
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at that point. And so then then, so I was with my son
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in a plane. We end up flying to the Trolie's Hospital and Fargo and
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I We're going through all these x rays, all these CCTs kids, and
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that I remember he was in one of those crib type things where they can
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monitor me and I'm just sitting next to him. And once they told me
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they didn't know what was going on, I just started to write. And
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I started to write about not so much just for me, but for my
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son. I was writing for a perspective of he's going to be going to
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the hospital all the time. So I wrote the book Seamus and the Horizonal
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Hospital to try to be a guide for him. So when he would go
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to the hospital, he wouldn't be an issue of I'm afraid to go.
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It would tell him you're going to meet this person at the door. They're
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going to take you back. It's going to be okay. You're gonna then
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go and you might get some shot, and that's gonna be okay. I'm
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gonna be with you the whole time. At the end of it, you
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and I are going to be together and we're gonna leave together. And so
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I wrote my my first real story sitting next to my son as he was
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he was going through probably about you know, the hardest part of his life,
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and I guess the hardest part of our family's life up at that point.
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And so, yeah, that's what happened. Fantastic and that's a that's
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a that's a fascinating story. Again, and you said you write a bit.
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Obviously, you write in your stories for pleasure, and he said,
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as well, it's therapeutic as well. Was that was that sort of one
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of the main reasons why you started writing in the hospital? Yes, that
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was very, very therapeutic to write because it got it, It got the
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the stuff inside out. I got to almost reassure myself that things were going
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to be okay. And in some ways that led me to want to share
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that with others, because, as you know, having Hirschbrung's disease, it's
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it's something where you always have to explain what it is, and every time
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you go to the doctor, you're explaining it to ten different people, you
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know, and so at a certain point you know more about Hirschbrung's disease than
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the doctors do. And so yeah, it was a good way I think
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for me to help others who were having similar you know, diseases or other
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types of rare diseases. And it helped me also fight a community. So
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it was therapeutic not just to write it down, but in writing it and
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actually get it, you know, publishing it and sending it out. I
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found other people were going through similar struggles, so I could build a community
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with those people. And I think that's really where the therapy came in,
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was finding people that understood what you were going through and being there I listen
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and being there to help, and then reciprocating that to those people. Yeah.
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No, I definitely understand that. That explaining Hirshprung's side, I mean,
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I think I think I've managed to get it down to about paragraph.
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That's that's that's taken me about thirty years to get it down to paragraph from
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kind of from several pages worth trying to explain. No, I definitely hear
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you with that one. So you you also haven't just written Seamus and the
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Horizontal Hospital. You've also written to other books as well, And where has
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your inspiration come from with so say take the second a recent the slumber party.
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Yes, it's a recent the Silenced thumber party. That is. I
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really appreciate you asking about that one because I have I have another child named
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preece My Saide Seamus is our second child. So when I know you mentioned
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in a previous podcast, I believe you're the youngest of four children. Your
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there's four in your family in Hirstbrugs. There, it's one in you know,
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one in four. Uh, my daughter she does not have Hirstbrugs disease,
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but she has been really affected by my my son's diagnosis and hospitalization.
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And so when when I was my son did not sleep at all. He's
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he had a total Chronicker Sprungks disease. So he actually they actually removed his
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large or large intestin his colon after about eight months of having it. He
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had an aliostomy bag for a period of time. And so during those times
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we the iliosomy bag you know, would leak or we have to change it,
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or he wouldn't he would be having spells of vomiting. He would sleep,
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and so we had just a lot to do, whether it was that
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or irrigations. And so and my daughter at the time was probably you know,
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three through four, and she didn't understand what was going on. But
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what she knew was that we were spending a lot lest there and I didn't
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understand at the time that they're siblings of the children who have diseases or any
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special needs that the require attention are sometimes referred to as glass children because you
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look right through them. And so my daughter came up to me and I
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tried to spend time with her because my son never went to bed and my
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daughter her had a bed time, and so she was like, well,
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why do I have to go to bed if my brother never does, And
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she didn't, you know, understand what was going on. So we ended
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up doing these things called silent slumber parties where to get her to go to
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bed, I would spend a little bit of time with her, where we
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would have tea parties. We would do shadow poppets, I would you know,
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date and do to little like dances with with with with music, and
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so it would give her some time with me alone that I could show that
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I loved her. And so at a certain point she asked me, she
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goes you wrote this book for Seamus that we read why is there not book
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for me? And I said, well, and then I kind of you
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know, it was I could tell that it meant a lot to her.
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So I ended up writing a book that was based upon our time together.
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The slumber parties that we did that had to be silent so that they didn't
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wake up her brother, you know, if he did ever fall asleep.
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So that was the inspiration for that, and it was mainly to help her
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understand that she was loved, even though we spent all this time with her
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brother who has this disease and it's kind of a silent disease at some points.
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But it showed her and I hoped to show other people too that there
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was a love between a father and their daughter is important. And yeah,
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so that inspiration came directly from my daughter, and in it in some ways
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directly from my son Glass children. I've never heard that expression, but it's
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but it says exactly what it is on the tea. That's yes, that's
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a that's a fascinating explanation. I've never heard that before, but I wish
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I've heard that before. That was, yeah, not fascinating, And you're
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absolutely right as well. When see when I was going through a lot of
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my my surgeries. You can kind of focus very much em on yourself,
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and I think I did you know throughout you know, when I knew what
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was going on when I was at ten, thirteen, fifteen, whatever and
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going through those surgery and very much focusing on me, but not necessarily thinking
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how it affecting my other three brother and obviously me being me being away,
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I was about two hours away from from from them from where we live.
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I went to London and her in hospital there, and yeah, sometimes you
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can sort of thing, right, I'll focus on the ill child, and
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sometimes it does not deliberately obviously, but sometimes people can get overlooked and then
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because they do just get on with things and they don't have special needs and
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they don't have RUMs and things like that. So no, I no,
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I totally totally get where you're coming from with that one. There is a
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third book in my understanding, so, well, would you like to describe
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your third book? Yeah, so that one is called to the Tent,
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a hide and Seek story, and that is a story that is based on
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Again, everything I read about is almost almost exclusively real life experiences that I
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try to take and use as a as a example or a message, right,
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I could promote a message through real world the real world experiences. And
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my daughter and my son and I we were always everybody. Every Saturday and
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Sunday we play hide and seek with one another. And it was always something
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where they're not a lot of really great places to hide in the house.
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But my kids loved it, and so my my daughter, you know,
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when when she's younger, she she thinks that she's hiding. I can't find
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her, and so sometimes you know, you'd pretend that you couldn't find but
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it was it was. It was a good experience for her because she really
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got to have some time with myself and her brother. And her brother would
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always give her away and find her, you know, because he didn't understand
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necessarily the rules they gained. And so what we what I ended up doing
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was the book was about from my daughter's perspective, that she wants to be
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the hide and seek champion of the house because we always find her. And
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so it was a real life kind of example of a time where I believe
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my daughter for over five minutes or so, we couldn't find her because she
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was high so well, and at the end of the time her brother comes
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and totally just ruined the you know, the experience for and she was like,
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oh, I found I found my sissy. And it was a great
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experience because act with my with my my son and my daughter. My my
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son has been in the hospital a lot, and in he was in the
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hospital for about three to four months between late December last year or December twenty
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twenty and twenty twenty two, I should say, in March of twenty twenty
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three. And so there was a time where it was just my my daughter
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and I together, and my my wife took my son to ab out of
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state hospital because where they where they had to do additional things to help him
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out. And so I wrote that book, and I actually took that story
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that I'd written many maybe a year prior, and I ended up publishing that
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book because I wanted to you know, a time where both my daughter and
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my son were together. I wanted them to remember that, and I wanted
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to also kind of foster an idea with other people that family is really important.
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Spending time with your kids is really important, because they're going to remember
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that more than they're going to remember that their dad's at work. They might
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remember their dads at work, but not for a good reason. And I
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also wanted to ensure that my my daughter and son both understood that not just
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individually but together as a family, they were special to me. And so
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yeah, it was it was a it was a good way for me to
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kind of show my both my my both my kids that I loved them,
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especially when at the time both of us were in different states. Fantastic,
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Yeah, not absolutely brilliant. I think all three books I have ordered them,
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by the way I have ordered well, thank you, and and I
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think I'm really looking forward to reading them. And it's something that that I
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would just I'm finding a lot of talking to two people like yourself, I'm
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finding a lot of resources that I would have loved thirty years ago, or
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my parents would have loved to have thirty years ago. So I do very
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much encourage anybody who's listening to this to go on Amazon and buy these books,
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because they're a fantastic way of explaining without going into medical detail, without
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going into sort of the wise and the war force. But they're fantastic,
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fantastic resource. I just wish though, I just wish they were around thirty
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two and a bit years ago. But for the future, do you have
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any other books planned? So I started writing. The next one I've read
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is something called the Curly Hair Conundrum, and it deals with the fact that
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I have curly here a little less nowadays, but my kids both have very,
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very beautiful curly hair, and so it describes, you know, kind
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of having to as a kid. I remember when I had curly here,
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there was always something that the first thing somebody noticed, and it's kind of
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a similar vein is that they're only noticed for their curly hair. So I'm
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working on that. I'm also once a month or so I write for the
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local paper here, just usually stories about a topic about usually something that you
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know, whether or not suicide awareness, because I've had individuals in the military,
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you know, that are affected with that quite quite frequently. So trying
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to do suicide awareness and prevention or stories just to kind of give a historical
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perspective on something like Memorial Day or Vedburan's Day, and just trying to also
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in some ways spread a message about you know, compatitic, compassion and honesty.
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So a lot of times the things I write now are more, you
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know, five hundred words or less, just things to get people to read
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about, to think about so that they can, you know, help their
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their fellow person get through the day a little bit better. Because the one
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thing that I didn't realize until my son was going through these health problems was
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everybody's going through something. And I think you can be the person that makes
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somebody's day better simply by checking in to see how they're doing, or in
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some ways you can be the person that makes their day worse because you decide
26:04
that you're not gonna hold the door open for right And I don't want to
26:07
be the person that doesn't hold the door open for people. So the things
26:11
I usually write about are trying to convince other people that we should not be
26:15
looking so much at ourselves but looking at how we can help others. Absolutely,
26:19
I mean yeah, as you say, little acts of kindness can really
26:22
go a long way. I have tended to find just a little whether it's
26:27
a good morning or smile or whatever, it might be, just just little
26:32
acts of kindness. I think that is so so important in spreading and spreading
26:37
message of positivity, which is something that you definitely definitely try and do within
26:41
within your books and where can people find your books the Amazon dot com.
26:49
They're also at Bards and Doble if you do any any searchers. I think
26:55
they'll also be on like eight books dot com, ingram, Spark, any
26:59
any place that you could go online to look for books, though they'll be
27:02
available, but I would just first start with Amazon. That's probably your best.
27:06
Yeah, let's where I went. I believe they're also in this country
27:10
in Waterstones as well, which is one of our guess biggest, one of
27:12
our biggest bookshops. So they sell all of the great books including including definitely
27:19
with your One and if people want to know more about what you're doing and
27:26
what you're you're up to, where can people find you? You can check
27:30
out my website at orconicbooks dot com. I'm also I guess X now used
27:36
to be Twitter fatal Instagram, Yes, it's it's in some ways. It's
27:41
always going to be Twitter, no matter if it's called X or not.
27:42
But I'm my social media. You can find me at Orconic books dot com
27:47
is probably the best way to find me, and uh oftentimes I'll include on
27:51
good Reads if if people are like to go to good Reads for I have
27:55
a blog. I post some some things about just my life with my kids,
28:00
but also a lot of the stories I'll put in there for like legal
28:03
publications or stuff I would submit to the newspaper, I'll include on that blog
28:07
too. So if you check out good Reads or my website, you can
28:11
pretty much find any anything you'd like to know about me. Well, it's
28:15
been an absolute pleasure talking to you. Thank you ever so much for taking
28:18
time out your very busy day and big a lawyer, author and and everything
28:22
else at the father as well, So I really really appreciate you taking your
28:29
time out to come and speak with the podcast. No, thank you,
28:33
it was an absolute pleasure. Tom. Thank you very much for having me
28:36
on your show. Brilliant invested luck with all of your future indeavors. I
28:41
very much appreciate it. I hope you have a nice day. Thank you
28:45
okay for make Thank you for listening to the podcast. Find us on Instagram
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searching Tom's Hirshbrung's podcast It Poot Poop Part spe