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Monologue by Laura McCartney

McCartney, Laura
Perkins, Tisha
Date of Interview: 
Overcoming obstacles; Tolerance and respect
Laura McCartney talks about raising her son who has special needs and the impact of epilepsy on her son, her daughters, and her family
Charlotte Narrative and Conversation Collection
Collection Description: 
Tisha Perkins interviews Charlotteans to collect stories for a class project at UNC Charlotte.
LM (Laura McCartney): I raised a son named Patrick. Uh, he's twenty-four years old now, but when he was little, he was extremely handicapped, and he had a seizure disorder and, um, he also had this awful problem and he didn't exactly understand what the world was about. So he did a lot of things, especially as a young child, that were both funny and embarrassing, I guess both to his sisters and to us. Um, one of the funniest things I remember, when he was about four years old, you had to hold onto him every minute when you were with him. And we were in mass in a church that was shaped like a 'T.' And we were on one side of the 'T' and he got away from us. He ran up onto the altar, while the priest was blessing communion of all times, and he ran around the altar and the priest just totally ignored him. The priest just like, you would have thought he didn't know he was there. Meanwhile, he's running around and around and my husband says to me, "Go get him." and I said, "No way. I don't even want people to know he's mine. Forget it. Go get him." I said, "You go get him." He says, "No way." So we let him run around and instead of coming back in the direction where we were, he took off in the other direction. He went out the other side of the church, and neither one of us wanted to get up and we knew we had to because there were streets outside, so there wasn't ever any choice. We got up, had to go out of one side of the church, race back around all the way to the other side of the church and try to get to a four year old before he could get to the street. And I swear we'd never go back to church. Um, and I don't think Jill or Holly ever wanted to go back to church either, after that. Actually, he did a lot of things in church. One Christmas, um, the priest had all the children come up and sit in the front and he told them a, a story about God or Jesus, I don't remember which one it was. And, then he said, "Any questions?" That was a big mistake with Patrick sitting up there. And Patrick's question was, "How does Jesus get inside of us?" Because the priest had said that Jesus was in us. He says, "Do we eat him?" I mean the whole church just laughed. And, uh, he says, "Boy, I knew there would be questions but I didn't know I had to go back to school to be able to answer them with this age group." But the, the priests were really good to him, and, and the church we went to, as a matter of fact, on that New Year's Eve at the end of mass, he had Patrick go up and sit on his lap during the last hymn. I said, "Ah, only my child." [Clears throat] But he was a challenge to raise. Um, the first school that he went to the, um, it was a Special Ed class in a public school system and a lot of teachers weren't too happy that they put special ed kids in there, when he was about five years old. And there was one older woman who was especially adamant that she didn't want "these" kind of kids in her school. Now, he had no way of knowing that. He was a five year old and had just gone to a school. And the third day that he was in the school, he was walking down the hallway and when he got to her classroom, she was standing like, right at the doorway with her arms folded across her chest kind of, I guess, looking annoyed because she really didn't want these kids in her school. And he walked up to her and kicked her. For no reason that anybody could ever figure out, why he would pick just that particular teacher, and why he would walk up and kick her, and she said something to him about, um, "That makes me really, really sad that you did that." And he looked at her and said, "I didn't do it to make you sad, I did it to make you mad." [Laughs] But his teacher was, like, out of all the teachers in the whole school, he had to pick her. He says somehow, he must have known that she didn't want him there. [Clears throat] But that was another one of the, another one of his winning things that he did along the way. He also, oh, one of the biggest things, it was kind of a joke, every time a teacher had him from the time he was three years old, at the end of the school year, the teacher would quit. His, his teacher at the end of three year old, four year old, kindergarten and first grade, all gave up teaching, when they finished having him for a, for a year. So we said, "Oh God." You know it was a joke in his school, you don't want Patrick in your class because it's the end of your career. And then a few teachers almost got fired because they took a class trip like little kids usually do, I guess he was in about first or second grade. Took a class trip to the post office to mail letters to Santa Claus, that they had kind of written themselves and they were teaching them about the post office and all that, too. And he got in line and he brought a stamp and he put it on his envelope and he mailed it, and they had eight kids and four adults, and somehow in the post office, they lost him. And he was on a, the school was in a city that, um, was on a main street with traffic lights and, you know, loads of traffic. And he had to go about fourteen blocks to get back to school, which he did by himself. And he really, being handicapped, he really hadn't ever crossed streets by himself or anything like that, so. And they had no idea where he went. They had, there was a town called Verona, they all had the police, all the fire department, um, school personnel, everybody, out searching all over looking for him. And it ended up he was back in the classroom sitting doing his math work. Because he was very structured and like one o'clock was supposed to be math and he looked at the clock and it was ten to one and so he went back to his classroom and did math, while half the town was scouring Verona looking for him. [Laughs and clears throat] They wanted to fire his teacher for losing him but, we kind of talked them out of it because when he was young, anybody could have lost him. But, um, so that's that teacher, she quit at the end of that year, too. He did in more teachers probably than any student you ever knew. But, [clears throat] he used to embarrass his sisters no matter where we went. Like, we'd go to McDonald's and he'd take food and spread it on the wall or while you were not, weren't looking, like if we made a mistake and go up and get somebody a drink, if it was me and my three children, I'd come back and he'd have like catsup drawings on the wall or, uh, [clears throat] any number of cute little things he used to do. Um, he went to, he went to a, a spec-, special school when he was in the sixth grade. He went to, from about third grade to sixth grade, he went to a school for emotionally disturbed children. That was an experience because he would get beat up on the bus every day going and every day coming back. Um, and he used to tell, tell us that he'd get beat up on the bus and the people on the bus used to say, "No way." Until we put a tape recorder on the bus and found out that he was telling the truth and not the people on the bus. [Clears throat] Um, let's see, then, he improved as time went by, um, he had epilepsy. He had epilep-, epilepsy all his life, uncontrolled seizures. Um, sometimes he had five seizures in a day. He did have a seizure in a classroom one time in the middle of class and the teacher ran out and left the kids there all by themselves because she was scared. And I totally understand that you can be scared except that she knew that he had epilepsy, and she knew that, you know, that his having a seizure was always a possibility, she wasn't very happy about having him in her class, but that's beside the point. Um, she ran out and left seven mentally disabled children with a child that was having a seizure. That teacher, if they had wanted to fire her, I would have. I wouldn't have stepped in and said that they shouldn't, but [clears throat] they, what they really wanted to do was take him out of her classroom and we didn't allow them to do that because we didn't think that was fair. I mean, it was his classroom, it was in the middle of school and if you have seizures, you can't help it. Um, luckily, as he got older, I guess he was in about 12th, no it couldn't have been, he was in about the 10th grade, when a doctor moved here to Charlotte who does, he did surgery for epilepsy. It was a brand new procedure. He was the first teenager in Carolinas Medical Center to, um, have it done. He was extremely fortunate because he has a bleeding disorder, which wasn't discovered until about a week before he was supposed to have brain surgery. When they're cutting on your brain, having a bleeding disorder is not the best thing to have. Um, but they decided to go ahead with it anyway. Um, he, they've probably done about forty or fifty people in Carolinas Medical Center since and I believe he's probably the only one who's totally seizure-free. Um, just about everybody gets some improvement, um, or they do have like, if you used to usually have something like four or five seizures in a week, they may cut you down to one or one in every two weeks or, but he was very fortunate because he had it about nine years ago and he has not had one seizure since. So apparently, wherever his seizures used to start, they really did get the source of the problem and corrected that. Because when you're a teenager, it's a big thing because if he hadn't gotten rid of the epilepsy, then he never could have driven a car. Which, any teenager knows, that's one of the major things in your life when you're that age. [Clears throat] But it would have affected his life, all his life because getting to work, wherever he was, he would have had to always depend on public transportation, getting any place, I mean, living in Charlotte or lots of cities, it's really tough to get around. In the neighborhood where we used to live, we were two and a half miles from the road. So someone would have even had to take him, be available to take him to the bus. Or I guess we would have had to live in areas where you could have walked to the bus. But that really restricts your whole life, you know, even if you want to get, he, he plays chess. They have tournaments all over, they have tournaments in the city, they have tournaments, um, in other cities and he probably never could have gone to all those kind of things that he goes to if he couldn't drive. Or he would always be dependent on somebody else to drive you. So getting rid of the epilepsy was a big thing. Um, he still has a restriction on his license after 9 years with a motor vehicle. They make him go for a screening every single year, um, which makes me angry because if you have a heart attack, the chances of you having another heart attack is very large, or if you had a stroke, the chances of you having another stroke is very large. But they don't make you, they don't put any restrictions on your license and they don't make you come and say, "Oh, I went to the doctor and I'm taking my medicine and he says that I'm not having a stroke or heart attack." But with people that have had, once you've had epilepsy, they seem to feel that they have the right to interview you every year and decide whether or not you can drive. Doesn't make sense to me and it doesn't seem fair, but they do get away with it. Um, fifteen minutes is a very long time. Um, Jill and Holly probably were affected a lot by Patrick's epilepsy because surprisingly a lot of people really don't know a lot about it. And a lot of people think that it's catching. Um, there were, my daughters actually have friends whose parents didn't want their children to come to our house because we had a child in the house who had epilepsy, and I don't think it was so much that they didn't want their child to see him have a seizure as they, I really think that on some level, people think you can catch it. And, you know, it's brain disorder, it's not something that you, that you could possibly catch from anybody. Um, watching someone have, have a seizure can be frightening. Um, but once you've seen it, it's not frightening anymore. One time we were in a restaurant one time when, um, maybe Jill, and Holly and Patrick might have been six, seven and nine, and there was a man two or three tables over that had a grand mal seizure, fell off his chair in the restaurant, fell onto the floor, started to, you know, shake and you had to see people, people jumped out of their booth and like, left the restaurant, while this man was doing this and my three children turned around, they looked at this man jerking on the floor, they turned back around, they kept eating. [Laughs] And when the whole thing was over and the man was OK and he was sitting back up and then the waitress comes over and says, "Do you mind if I ask you a question?" And I said, "No. Why?" And she says, "None of you did anything. Your children didn't cry, they didn't get upset, how come?" I said, "Oh, well, they've seen that lots of times." That's no big deal to them." They turned around and said, "Oh, he's having a seizure. OK. Let's eat." But you know, so you get used to them, once you've seen them, you're not afraid of it. Um, it's not, there's not really anything you can do for a person that has a seizure, other than let them have it and make sure they don't bump their head on a, a table leg or, or something like that. But you really can't stop it 'cause it stops by itself. And, I mean, it's like everything else, if you don't understand it, I guess it's easy to be afraid, but if you've seen it, it's like a normal course of things. It's kind of like what you get used to. You can live without a television if you've never had a television. If you've had a television, then being without it is like hardship. But for my kids, like even now, um, Patrick hasn't had seizures in a long time, but like, I think you would find out that both Jill and Holly were around anybody who had a seizure, it wouldn't be a big deal to them. They would look at it and say, "Oh well. What can I do to help?" Because it's, it's something that, it was, you know, they, they know that he used to have them. It, it would stop and he'd be fine. Actually, he'd be confused for while, but, um, it wouldn't be a big deal for them to walk over and help somebody that had a seizure where, I guess, you'd never seen one, you probably couldn't do that. But that applies with a lot of other things, too. You could have somebody fall down and get a big gash in their arm and my husband, my son fell down the steps when he was five or six years old and we had wooden steps, and he spilt the front of his head open, big time, from like his eyebrow all the way up into the middle of his head. My husband couldn't even pick him up. He took one look at the blood and said, "I'm going to be sick." I said, "What do you mean, you're going to be sick? Help me," you know. And other people, you could cut your arm and could cut it right down to the bone, I'd walk over, look at it and put a towel on it, and so, I guess with seizures, it's the same thing, some people can handle it and some people can't. Although when you're the person that has, has a kid that's doing it, you get really angry at people that aren't very nice about it, because, jeez, he'd have seizures anywhere, I mean, he would have them at the store, he would have them in church, he would have them and people, the things people would say and do sometimes. I mean, you know, "Look at that freak," or some people would look at you and say, you know, "Get that freak out of here." Things like that, which, you know, when, when you have a child that has epilepsy, there's enough to deal with without having to deal with people on top of it. They stand around and they say stupid things and sometimes even do stupid things.