WELCOME TO MY
LITTLE CORNER
OF THE WORLD
Stories about how I deal with
Cerebral Palsy
The Story behind the story!
How I cope With C.P. Written in 1994
 |
When things seem different, it’s hard for people to accept what they don’t normally see in everyday life, especially when they don’t quite understand how to react. Take, for instance, my disability, which is Cerebral Palsy, better known as “CP”. I have had CP since birth, so it is difficult to understand what “normal” is, but my question is, does anybody?
Ever since I can remember, children have been one of the most delightful experiences I have ever encountered. Up until I was in fifth grade, I was in schools that had disabled students only, and I did not have to deal too much with children who were not disabled. Only when my mother would take me shopping, did I notice the other children and how they would make their silly little remarks or make faces, which in return, I would have to make goofy faces back at them. Then I was moved into a school where there was one class for the disabled, and all the rest of the classes were filled with “normal” children. Once, I was with children who could run, jump, and play all the games that children of that age played. I began to want to be like the children that I had seen. While at recess one day, I decided to get out of my wheelchair, and I got behind the wheelchair so I could use it like a walker. The children would look and stare, but I didn’t care because I wanted to be like them and just have fun like they were. It didn’t go over that well. Some would laugh, and others would make funny faces and try to imitate my every move, but it didn’t bother me. I just went on my way and laughed until one of the aids came and put me back in my wheelchair. But as soon as they leave, I would just get back up and try and do it again.
A few months later, I had one of my annual doctor’s appointments, and that is when they gave me my first real walker. I thought I was hot stuff until that day when I was walking from a class, and this boy I kind of had a crush on offered to walk me to wherever I was going. I got excited when I got excited, I tended to start to shake; then my nerves got bad, which made it very difficult to speak, so by the time we got back to class, I could not even breathe, let alone talk to him. He almost had to give me CPR.
When I got to high school, the children were just bizarre. At this age in teenagers’ lives, they don’t care about anybody but themselves. Sometimes I felt as though I had a disease, especially with guys. The girls were not that bad; it was more the guys who gave me trouble. For example, it’s hard to get dates when you have this person who shakes every time a cute guy comes along and says “hi”, and it takes all you have not to be nervous and move around uncontrollably. But when all the focus is on not moving and trying to stay in your wheelchair, then when you try to talk, you lose it all, and the guy you were impressed by just walks away. Another perfect example is when a girlfriend of mine knew I liked this guy who helps in homeroom, a classroom for disabled students, when they have problems with other classes or anything else that might happen to pop up. One time, we were watching a movie, and this guy was sitting in front of my girlfriend and me while we watched the movie. Lisa, my girlfriend, decided to tease me about telling him that I liked him. Well, Lisa wasn’t teasing; she told him right then and there. Let’s just say he was a little shocked; he didn’t even look at me for two weeks. I guess he never had a girl with a disability like him before. Some teachers were not quite the best at understanding either. The one that came to mind was a math teacher; the second I got into his class, he asked me if I could write. Of course, I replied no; the next thing I knew, I was out there. That was okay by me because the replacement teacher I had was great; I even got a “B” in the class.
There were so many other reactions that I have gotten from different kinds of people. For instance, when I’m at the Valley Plaza, I get some of the funniest glances. I recall this girl who was by me who had this strange look on her face, it was as if she saw an alien from outer space, all the while, still walking to wherever she was going. People, young and old, would look and comment on how I would do things, as if I took too long to get my money out to pay for something. Sometimes, when people get impatient, I have even more time to get my money out. That’s what gets their pants or dress in an uproar. Also, there have been times when people will come up to my money for no apparent reason at all. My favorite one was when I was buying a Christmas present for an ex-boyfriend of mine, and the gentleman offered to pay for the gift just because he wanted to.
I may have been coping with my disability, but it wasn’t until I got to Bakersfield College that I accepted my disability, but it wasn’t until I got to Bakersfield college that I accepted my disability. B.C. was something new and different than what I was accustomed to in high school or elementary school. At first, I was a little bit hesitant to go on, but I knew if I didn’t go on, I would just be sitting around the house doing absolutely nothing but watching soaps all day. Not that I don’t watch them anyway, but at least that’s not all that I do. I have learned so much, not just from classes that I have taken, but from people who were in the boat as I am. I was amazed at how many people went to B.C. who had disabilities of some kind or another. I started to meet new people who had the same issues as I did, and I felt good that I wasn’t alone. I also got to know some of the people who worked at the college, and that is when I felt more comfortable with my disability. Joyce Kirst, an instructor for the High Tech Center, gave me my first job. After working there for a few semesters, she entered me in this contest that had a brand-new IBM home computer for the prize. When I won, I had to make a speech in front of twenty or more people. My first thought was Joyce, you had to be kidding. I had never made that kind of speech in my life. I practiced what I was going to say for a week. Finally, when I made it, I could not stop; people probably would never shut up. At least I did get over my shyness, even though people probably would have liked to have seen me a little shyer.
I began to open up to a whole new area in my life. On the weekends, I started staying at a girlfriend’s house, and some of my other friends took us to my first bar, and to say the least, I was astonished at the way that people acted. When we first went in, they were saying, “Why would they come? They come to this bar or something to that effect. When a few hours had passed and everybody had time to get a few drinks down their throats, it started to get exciting. While sitting at our table, people would be dancing and coming up to us to ask if we wanted to dance with them. At first, I was thinking how it would be so funny to see someone in a wheelchair who was a little bit drunk, trying to dance. But one of my friends said to me, “Kim”, we can dance just like anyone else, if you don’t like me, that’s their problem, not ours. We have just as much right to have fun as anybody else in this bar does. From that night on, I didn’t feel as different from the people who were in the bar.
I had my first steady boyfriend when I was in my second year at Bakersfield College. He was a character, me, who people with disabilities do not have to sit at home and stare at the wall. Every weekend, you would see him either at a party or a local dance club. If he weren’t at a party or a bar, he would be out on Chester Avenue cruising with all the teenagers blasting his stereo. You could see him coming a mile away. People would stop and stare at what was coming down the street. He wasn’t afraid of anything; he got a kick out of people coming up to him and asking about the stereo that he had put in his wheelchair. One time, he told me that a police officer stopped him for having his stereo up too loud while going down the street. There were a couple of times when I and a girlfriend would go with him. Well, let’s just say I didn’t like to be noticed, I was more of the background type, and watch.
I have learned a lot from other people’s reactions to me; some were good, and others were bad. For instance, if I’m not able to drive, I take either Get-A-Lift or the city bus. I never had an issue with it until this one Saturday, when a friend and her husband wanted me to come to see their apartment. I got ready that morning and got on the city bus. I wasn’t too sure where they lived because I wasn’t too familiar with the south side of Bakersfield, so when I got downtown, I wasn’t too sure what bus to take. Once I figured out the route, I was on my way. When I arrived at their apartment, to my surprise, they were not even home. By that time, I was not too happy; I was upset and frustrated that I went all the way over for nothing. I wasn’t sure what time the bus was going to be coming back around, so I went back to the spot I had gotten off. I was angry and hot, of course, with those combinations, my body moved out of control, even more so when I was nervous. When I saw the bus coming, I tried to get on. When the bus stopped, the Driver asked me if I wanted to get off. At first, I wanted to ask him if he was going to the plaza. But he had trouble understanding me. So, another rider told him that he thought I asked if he was going to the plaza, he looked at me, and I said, “Yes”. While I was trying to get myself on the bus, the handle that was on my control box had come off my wheelchair. Of course, I had trouble putting the damn thing back on. When I finally got myself situated, I could hear people talking about how I should not be by myself. This woman sitting across from me kept asking if I knew where I was going and if I knew where I lived.
Almost First Date Written in '93
While I was in elementary school before we intergraded, a man came to our classroom to talk about a wheelchair football team. He wanted to know if we would like to join the team. It was something new and sounded like it could be fun. We would practice on Fridays after school, for me it was a time I got to spend with friends out of school which I wouldn’t have otherwise wouldn’t have done. I’m not sure how long we had been a team when the coach said that we were going to have a prom and that we all had to have dates. At first, I wasn’t sure who I would go with.
One day we were all waiting for the bus to go home from school. Larry and I were sitting on the grass, and that’s when he asked me if he would like to go with me to the dance. He said he would like to go if he didn’t have to go in for surgery, I was so excited that was smiling all the way home.
My Mom took me shopping for a dress. We happen to see a lime green skirt paired with a matching top that had lace going around the whole outfit with a pair of black shoes. Everything was going well until we went to practice the day before the dance. Were all sitting around waiting to start practice when the coach said he just needed to ask if everyone was ready for tomorrow and if we all had dates. All you could hear in the gym was all of us yelling Yeah, but I overheard Larry talking to other people and saying that he was taking someone else. I was crushed. Sissy, a woman that came to help out will saw how upset I was getting. She asked if I was OK, I explained what I heard and that I didn’t know what I was going to do. She hugged me and said that it was going to be fine. I’m not sure what happened, because once the coach found out, he said not to worry and that he would take care of it.
The next day, My Mom dropped me off at Sissy’s to get ready for the dance. So after Sissy helped me get dressed, we took off for the dance. As we were walking in with my walker, that’s when Larry walked up to me and asked if he could walk me to my seat. In my head, I wanted to scream, but I was nice and let him. I do remember that there was a boy at the table waiting for me to be my date. Although the night wasn’t as I had planned, the rest of the night was fun.
I’m not sure of the time frame, it might have been a week or so that at school a boy came to me and asked if I would come with him that Larry had something to tell me. Of course, I was curious as to what he may say, so I went with him to see what Larry had to say. Well he was acting so nervous, I just was sitting there waiting for him to speak. When he finally didn’t he said that he liked me. All I was able to do was laugh, it wasn’t probably the best way to handle that situation, but I could not help it. As the bell went off to go back to class, the boy told me I wasn’t being nice. I was walking with my walker so it was hard for me to speak, so I couldn’t explain why I did what did. Do I wish I could go back and do things differently, don’t we all?
The little Race car
There was a grand opening at a store downtown, and Joe and Tanice decided to see what it was all about. While they were there, they entered a contest to win a pen oil race car built for kids. Luckily enough, they pulled Tanice’s name. Of course, when they brought the car home, all the neighborhood kids that we hung around with since we moved here. We have almost five acres that my grandma gave to us, so we have a field in front of our house. Ronnie had a boy named Russel, who had often come to stay at our house all the time, who has been one of our neighbors, offered to drive his tractor over to make a track for all the kids to drive this little race car around in this field.
The next day, we all went back out to drive the car again. I once again tried to get my mom and Joe to let me drive this car; they finally broke down and let me drive. I was so excited that I was going to get to drive the car. Once Joe put me in the car, I took hold of the wheel with both hands and put one foot on the gas and the other on the brake. It was going well. I got out so the others could take their turn. I may have had one or two more chances to drive the little race car before it went out of control. Of course, we knew who was the one out of control, me! The last time I drove the car, I started well, but for some reason, my hands let go, and I couldn’t grasp the wheel. Of course, that meant that I lost control of the car because I still had my foot on the gas. There was a bob wire fence that surrounded our property, and that’s where I ended up. Well, at least the front of the car. I wasn’t hurt, the car wasn’t hurt, but it broke because of all the weight of us kids. At least that’s what they told me.
A Graduation and a vacation
Time has a way of slipping by in the blink of an eye. We were fortunate enough to be able to watch and help Meghan grow up. I was so delighted to be an Aunt and was able to help raise her since I wasn’t able to have children of my own. We were all so lucky that Meghan came into our lives. She has and continues to bring joy to our lives. I remember when I gave a bottle to her, Tanice asked me if I wanted to try it. Of course, I said, “Yes, I’ll try”, and my sister handed me the bottle. It was one of those bottles that you put the bag into the bottle and then you fill it with formula. The way the bottle was made helped me be able to feed her by first laying it on Meghan’s chest. Once it was aligned with her chin, I was able to put the bottom of the bottle in my mouth to hold so that I could rest the bottle with my chin while she was drinking from her bottle.
As Meghan was growing up, reading was a significant part of her bedtime routine. Mom would read to her, but instead of just reading to her, Mom would read a page, then Meghan would read a page. Mom felt that reading to children as early as possible would greatly prepare any child for life. It also helped that she had a few wonderful teachers to help her love the art of reading and comprehend the material of what she was reading. I believe that it has helped her throughout her school career. Later, it helped her in her career choice. Once she got older, bath time was something I could help with, and I enjoyed helping Meghan with her bath. She was old enough to take a bath on her own, but still needed help washing up, so I would help her wash her hair. Let me tell you, Meghan was a trooper. I would wash her hair, of course, with my cerebral palsy, and my hands shake, so sometimes I would pull her hair. Believe it or not, she never complained about it. There was a time when I did feel awful. We were all trying to potty train her, so when I would take Meghan to the bathroom, I would try to take her once an hour so that she could get used to the idea of going. Once we were playing, and it was time to go to the bathroom, she told me no. I just tried to explain why we had to follow a schedule, but she did not. Of course, I was getting a bit frustrated with her, so I probably said and did what I shouldn’t have done. I looked at her and said, “Meghan, come on, let’s go.” She looked at me and said, “No”. At this time, I was getting upset and said, “If you don’t, I’m going to paddle your bottom”. Meghan looked at me and said, “No, you won’t”. Well, I took the palm of my hand and patted her bottom. Oh wow, Meghan looked at me with this look like you did that. She wasn’t hurt, just in shock that I did it. From that moment beyond, she was good to go to the bathroom. There are so many moments that were special with Meghan that I will never forget.
When Joe was working downtown as the superintendent of schools, he was able to get Meghan into the downtown elementary. She had a very good teacher who taught her to read well and believed in giving homework. Which I feel helps Meghan with the foundation of her love for reading. With the understanding and comprehension of reading, and how she loves it. Has opened so many doors for her. In her high school years, she was in FFA, which I believe gives kids responsibility to carry throughout their lifetime.
While Meghan was going to Bakersfield College, she took a few art courses since she loved photography. She enjoyed taking pictures, so when her instructor told the class that, for extra credit, they could go down to L.A. to go to Paris Photos, which happened to be on the Paramount lot. So Mom, Tanice, Meghan, and I took a trip to see the artwork. Meghan was off doing what she needed to do. Tanice, Mom, and I were looking around, and oftentimes Mom hangs our purses off the back of my wheelchair. I felt her hand, which I thought meant that she wanted to grab her purse. It was like she had been frozen, which is not like my Mom. She just saw a man who happened to be on one of my soaps, it was so funny that I was bending over laughing. Tanice was saying how crazy we both were. Once Mom got her composer back, she felt bad that I didn’t see him and that she pushed me around trying to show me different TV stars, but I was too busy laughing my head off to notice.
The week before Meghan went off to a university, I was going through some health issues that led me to need surgery. I had to spend two or three nights in the hospital. Mom, Tanice, and Meghan spent all day while I was in surgery, and that whole day. Of course, Mom stayed that first night. Then Meghan told her Grandma that she would come back after the hockey game and stay overnight so that she could go home to get sleep since she wasn’t able to get any sleep while she was with me in the hospital. The day I got to come home, which was a Saturday, of course, in hospitals, as one could imagine, the hospital administration doesn’t move too quickly. I knew they had another that night, so we were trying to get out as soon as possible so that they could go. When the doctor came to release me, they took off to get things from home and get the car close to where Tanice could get me into the car; we were off to the races. Once we got home and I was in bed with Mom at my side. They all were able to go to the hockey game.
We all knew the day would come when it was time for Meghan to go to college. It took every one of us to either support her financially and be supportive to get her there, of course, that is what family does for their own. We all need to band together to help each other when needed. As a family, we all knew it would take all of us to help Meghan go to her choice of school after high school and Bakersfield College. Joe, her Grandpa, whom she calls Popo, always told Meghan, he would pay for her to go to a four-year college. I’m not sure why my Brother-in-law, Rob, and Tanice bought a condo in Las Vegas, which was an excellent move for Meghan. Another way that she was able to go to school was the fact that Popo told her that he had a college fund for her, which made it easier for her to go. Everyone played a role in getting Meghan into college. Not to leave out Meghan herself, who worked hard throughout her school career while holding down a job.
The week before Meghan went off to a university, I was going through some health issues that led me to need surgery. I had to spend two or three nights in the hospital. Mom, Tanice, and Meghan spent all day while I was in surgery, and that whole day. Of course, Mom stayed that first night. Then Meghan told her Grandma that she would stay overnight so that Mom could go home to get sleep since she wasn’t able to sleep in the hospital. A Nurse tried to find a more comfortable chair for her to sit in, but she wasn’t able to find one, so she just bore with what was in the room, like my Mom the night been. Luckily for my sister Tanice, I could go home that evening. Although my sister did help me into the car to come home. I know it was hockey season because as soon as we got home, they all went to the game except for Mom.
I’m not sure why, but I was caught off guard. That following Monday, she left for Las Vegas. I’m not sure why I was shocked by her leaving for Vegas, and I didn’t like to see her go. As my Mom said, it was time for her to go and spread her wings. I’m not sure why Meghan decided to go to Las Vegas University. She was going to be a teacher. After looking at the options, special education was the way to go since there would always be a need for teachers. It’s a career where she could go wherever she likes and have a great job.
As I get older, it has become much more difficult to go places due to my body breaking down from overuse of my bones, so without help. It’s been harder for me to get around like I used to because I have overused my bones. So over the years, I have become more dependent on others. For instance, if I need to go anywhere, someone has to lift me into the car. It has been an adjustment because of how I used to be. So when we found out that Meghan was going to graduate in December, of course, we were all so excited for her, knowing how hard she had worked to get a diploma while holding down jobs. My Mom commented that she didn’t know any other kid whose parent could send their kid to Las Vegas and do so well. Of course, Meghan is not the type to party; she’s responsible, and that’s why she already has a teaching job at a school for the mentally disabled. She’s been teaching for some time. Meghan has a dog named Jov, and she takes him to the dog park once in a while. She happened to meet a woman who taught at a special education school. Meghan got talking to her about school and other things, and explained what she was going to school for. The woman said Meghan possibly be able to apply for a teaching position at the same school. Of course, Meghan had some idea of what to expect from talking to her Grandma about me and what she went through with my situation, going to a special education school, and all it entails. Fortunately, when she went to a job fair, with resumes in hand, and found that she had three options waiting for her, one of the three schools happened to be the same school that the woman in the park worked at.
Two weeks before Christmas, Mom and I followed Rob and Tanice to Las Vegas to see Meghan graduate from LVU. We spent almost a week there since Meghan lives in a condo that Rob had invested in, which made it nice for Meghan not to have to pay rent somewhere. We stayed at a hotel since the condo has stairs, which would be difficult, so Mom and I stayed at a hotel, which was very nice. I was kind of concerned about getting in and out of the car every day because I usually get sore after getting in once in a while. Thank goodness for my sister, Tanice was able to pick me up to get me into the car every day that we were there. I had a great time. Rob, my Brother-in-law, drove us everywhere. We went to the strip a few times, the newer part, which has a lot of shops like the Coke store and the Hershey store, and others. It was decided to try different Cokes that were made in all the countries in the world. I think Rob was surprised that I tried them all. There were a few that they could tell by my face, I didn’t like. We all laughed and agreed. That night, they asked me if I wanted to go somewhere else to get out. I just couldn’t do it, so Rob took us up and down the strip, acting like a tour guide, telling us where we were. He even showed us the restaurant where Hell’s Kitchen is filmed. It was fun. The only thing I didn’t do was, I’m not sure why, but there is always next time.
On the day of the graduation, where later in the afternoon we all went to the college to watch our baby switch to a full-fledged adult, even though she’s been an adult for some time now, which is hard to believe.
Lori Knew Me Before I Knew Her
I was under five when I began attending McKinley Elementary School, which had a special program for children with disabilities. I only recall that my father died in a trucking accident. We moved back to Fontana, California, to be with my mom’s family. Years later, my mom met Joe at my grandparents' store. What was so amusing was that I had met Joe before Mom introduced us to each other. Joe happened to be walking through the store with a bag of dog food. I was walking around in my walker, which looked like an overgrown baby walker, and happened to be behind him. I am unsure if I was thinking as if I knew who it was, but I started hitting his bottom like a child wants an adult to pay attention to them. Joe looked back and down to see what or who was hitting him. He saw it was me; I just sat down in my walker as I looked up and smiled. That evening, we were home, Tanice and I were on the floor with collaring books, and here comes Joe. I did recognize him, but I did not think anything of it. We eventually returned to Bakersfield, California.
That summer, after our family moved to Bakersfield, my mom decided to send me to a camp for children with disabilities. At first, I was unsure if I wanted to go, but when Mom and Joe dropped me off for the first time, I cried. Naturally, upon returning home, I became emotional, reflecting on how much I had appreciated the experience and my desire to return to camp. I thought this was where Lori and I first met for the first time. Came to find out that she had known me from when we lived in Bakersfield before we moved back to Fontana. Lori would try to teach me the alphabet on the way home from school, but according to Lori, I said, “I probably wanted to get home and play.” We would love to talk about all kinds of different topics. When we went to our cabin, Lori and I ensured that we always had our beds close together to talk after getting the sleeping bags, and we would for hours. It was during this time that Lori mentioned she would try to teach me the alphabet on the school bus, but I was not interested. When she mentioned it, I jokingly said I just wanted to get home, and we both laughed. Sometimes we played a game, Lori called "Build a Guy." In this game, we took turns describing the qualities we wanted in a guy we would like to date. Often, our thoughts consider someone to be strong, confident, and helpful. Of course, it did not hurt if he was handsome! At camp, we always felt like we had a small part of freedom. I realized that we had staff around, but we felt as if we could do things that we would not be able to do otherwise. Every year on the night before we leave for home, they would have a dance for all the campers to celebrate the end of camp. As we left the mess hall, I saw Lori dancing with a camp counselor named Army. She looked as though she had been walking on cloud nine. As we lay in our sleeping bags for the last night, we talked, and as she spoke, I could see and hear in her voice how elated she was. It meant the world to Lori.
We were familiar with all the camp counselors for many years, but one summer, a new person joined as a counselor. First, I did not see anything wrong except that he was coming on strongly to get to know me. It is difficult for me sometimes to warm up to someone if I feel uncomfortable around people whom I may not know well. Lori asked me why I felt that way. I explained why, and she said she understood. After a while, I got to know Cedric, and he was one of the nicest men I had met in a long time. He was a funny guy. Once he offered to buy his wife and me tickets to a Chip and Dale show. At the time, I was in my twenties and a bit naive, so I said that I did not feel comfortable with watching men dance around in their underwear close to and around me. If I had been older, I would have been there in a heartbeat. My heart broke when I heard that Cedric had gotten into a motorcycle accident and passed away.
Since Lori’s and my birthdays were close together while we were up at camp, the cook would bake cakes. Lori’s was the first week, mine was the second week. So, when my twenty-first birthday came around, Lori surprised me with a party at Rosemary’s ice cream parlor with minor help from my mom. I had no idea that she had planned all that; it was so fun.
Christmas was important for Lori and her mom. I received an annual invitation to attend their Christmas party. Their house inside looked like Santa’s house. I know it took Clare at least a month or two before Christmas to have it before Christmas. She would have cookies and candy made for all who came.
I am not sure what year it was, but I know Meghan, my niece, was about two or three, and we had the kitchen floor done. Lori’s Dad was in the business. We asked him to do the job. He is available to come in the evenings for several nights. Of course, when he was here, Meghan was curious as to why he was here and what he was doing. She kept going into the kitchen to see what was going on. Sherman, who was his name was, just went along with her as mom tried to keep Meghan out of the kitchen, but she would walk back into the kitchen to talk to him. Sherman would say Oh, she is keeping me company.
School was particularly important to Lori. After high school, she went to Bakersfield College and then to Cal State, where she earned her BA. I admired much about her hard work. We did not talk much because she had so much on her plate. She completed her graduation after a period of study. I am sure it was a huge relief to be finally out of school. She was free from the pressure of school. We did find time to see Dave Koz at a concert one evening at the college. Lori introduced me to jazz music, especially Kenny G and Dave Koz.
Lori called me to see if I would like to spend a couple of days with her since her parents had to go out of town. She informed me that her uncle Sunny would be there, so that if we needed something, he would be there to help. Sunny had made everything funny. Whenever we needed anything, he would be right there to ask what we needed. He would come into the room and ask us what we wanted. It was how he acted like he was our butler. It got to where I started to just call Sunny Uncle, Lori, and her uncle thought it was funny. Lori and I watched different soaps that were on at the same time, so Lori thought that we could watch different soaps. She asked me if I wanted to watch my soap on the first day, and I said that we could watch hers, which was Days of Our Lives. While it was on, I commented on how I thought this guy was so cute. The next day, Lori asked me what channel my soap was on, and I said that I would like to watch Days of Our Lives. Lori looked at me and laughed. Over the years, Lori and I talked on the phone since it was challenging to get together. Sometimes we would be on the phone for hours just talking about what was new and exciting in our lives. I noticed that when she called on a particular day, she sounded upset; it was Guy, whom we had known for years, who had died. I am not sure what happened. He had a disability that left his bones brittle and never grew. His mom wrapped Guy in bubble wrap when he started school to prevent any broken bones. Although he had this type of disability, he was always joking around with everyone. When I was going to Bakersfield College, I was waiting for a class to start, and he came around, beginning to tease me. You would have to understand how Guy operated, something he could get downright dirty. I have known for a while that he could sometimes go too far, but I learn a little later as to why he was trying to win me over. As we kept talking, Lori, after a while, mentioned that they had been dating for a long time. When my jaw dropped. All I could think of was, Why didn’t you tell me? As Lori was explaining that she was not supportive of David and me the first time, so when we started dating again, Lori said that she wanted to be supportive if I was happy. My reply to her was that I liked Guy, but I just thought he was a pervert. We laughed, and she said, "He was my pervert." Then we both burst into laughter. Once we had settled down, she had told me how they started dating and how long it had been. I expressed my happiness for her, although it was a bittersweet moment. I remarked that it seemed as though they were married, to which she responded that it indeed felt that way. I reminded her of the boyfriends that I had in the past and how she did not care for them. I was glad she had found someone. I just found it funny because everybody, including Guy, used to call Lori Mother Terrica because of her nature of being a goodie two-shoe. Of course, it was all genuine fun. I remember a weekend I went to Lori after her father passed away. I was sitting on Lori’s bed waiting for her to come back from the other room. Clare, her mom, came to the room to talk to me. I noticed that when she was speaking to me with tears in her eyes, telling me how lucky Lori was to have a friend like you, but I was the lucky one, I took that for granted. It was not too much after that, six months to a year, she had a heart attack in her sleep. I was worried about how Lori would react, but as time went by, I was shocked and amazed at how well she adapted to her situation. I am sure it was not always easy; she took it everything in trade. Lori was able to take care of things with her neighbors and family, and friends by her side. Usually, I check my email once a day or so, but my aunt and Uncle were down from Nevada to spend some time with us. Since I did not check my email that week, I did not know what happened until it was too late. Meghan came into my room, saying that someone wanted to talk to me about Lori. I wondered what was going on. I went to turn it on, and without even reading the date. I saw an email from Lori talking about how she hopes that they put chocolate in her feeding tube so that she would not go through withdrawals. It sounded like she was upbeat and not concerned about going to the hospital to take care of her hernia. One morning, I was waiting for my staff, Candie, when she sat down and asked me if I knew about Lori. I said, “No” as I looked up at her with curiosity. She told me that Lori had passed away. I replied by saying no repeatedly. I had to call her number, but I only reached Lori’s answering machine. Once I could not hear her voice, I knew she was gone. I could not believe it; I was in shock. It took a while for me to calm down. Once I did, I wondered why. Candie was not sure, but in the next few days, I received a phone call from a mutual friend who told me what had happened. Time has a way of sliding by; no one knows how long they have. That is why people need to let them know how much they mean to them before it is too late. Sometimes, when things happen unexpectedly, it is so difficult to comprehend why they happened the way they did. I can imagine that Lori’s up in heaven with her family and guy, doing whatever makes her happy. Time has a way of sliding by; no one knows how long they have. That is why people need to let them know how much they mean to them before it is too late. Sometimes, when things happen unexpectedly, it is so difficult to comprehend why they happened the way they did. I can imagine that Lori’s up in heaven with her family and guy, surrounded by teddy bears with yellow flowers since she loved yellow, doing whatever makes her happy.
💕
Lisa Mansfield and MeHow We Met and What Came After Written in 2023
When I was in high school, a few of us needed help eating lunch. At first, it was decided that aides would help us eat in the classroom so we would feel more comfortable. That arrangement worked until Jason Wheeler decided he wanted to eat with the other students in the cafeteria. The rest of us wanted that too, so we each followed his lead. After that, the students who had been helping us no longer wanted to do it. I never really knew why, though I could guess.
Lisa came to South High after the school year had already started. She seemed quiet and shy. Maxine was like a school mother to all of us—whenever anyone needed help, she was there. When the chance came for Lisa to help me at lunch, I met one of my best friends. It took her a while to feel comfortable opening up to me. From what she shared, she had a difficult childhood and had spent time in the home after she was diagnosed with MD. I got the sense that her parents struggled to handle her situation. I liked talking with people and getting to know them, so while Lisa helped me, I kept trying to learn more about her. Over time, she opened up, and we started spending time together after lunch.Later, I learned that Lisa had moved back home from a group home after her parents found out she had MD, a disease that gradually affects the body. At first, I did not know what her condition was. I only noticed that she sometimes had trouble with her balance. After a while, I spent a weekend at her house in Taft. Not long after that, Lisa and her mom moved into town. Sometime later, her mom remarried and moved to Hawaii. Instead of taking Lisa with her, she helped her get settled into an apartment. By then, Lisa was using a wheelchair, and the apartment had been designed with accessibility in mind. I especially loved her large shower because it had bars, and I could hold onto them. Lisa used to tease that I either loved being extra clean or was just a little crazy. One morning, when Maxine picked us up for school, Lisa joked that I must really love showers because I took one every chance I got.Like any high school, South High had its share of drama. It was a school designed for students with physical and learning disabilities, and the flat campus made it easier to get around. We all took the same P.E. class, and once a month we watched a movie in the classroom. If students were doing well in their next class, they could stay and finish the movie. One day, Lisa and I were sitting together joking around. She knew I had a bit of a crush on a student aid from the next class, and she blurted out that I liked him—loud enough for him to hear, which was mortifying. I put my head down and was so upset with her that I stopped talking to her. Days passed, and he would not even look at me. I tried to undo the embarrassment by having a friend tell him it had all been a joke, but it did not help. Then one day, while at my locker, I found an invitation to Lisa’s graduation. That was the moment I realized I was being foolish and missed my friend. I did not go to her graduation that evening, but we became close again after that.Lisa was there for me many times, so whenever I could be there for her, I would be glad to do it. Sometimes she would lose her balance and fall, and I would have to use the hoist to help get her back into her wheelchair. Other times, she would slide partly out of bed and call me in. I would find her stuck, rolling her eyes as if to say, “Well, I did it again.” I would crawl over and help push her back into bed, and usually, we laughed so hard it took twice as long. Those small moments were part of what made our friendship special. Lisa could be hard to read at times. When my mom dropped me off, I would sometimes warn her that Lisa might be in a bad mood and tell her not to say too much. But Mom would walk full of energy, and I would watch Lisa’s face to see how she reacted. The moment I saw Lisa grin, I knew everything was fine. My mom had a way of making people smile, whether they wanted to or not. Lisa and I were always going somewhere, either together or with friends, and some of our adventures were wild. On my twenty-second birthday, my sister Tanice threw me a party at a bowling alley with a bar. People kept buying me drinks, and before long, Lisa and I were both drunk, pounding on the table and shouting, “No one is paying attention to me.” I am sure we were quite a sight—two disabled women laughing, yelling, and carrying on in the middle of the crowd.We often went out to bars on Saturday nights to have fun and be around other people. One night, I had not eaten anything and had only had a few Cokes before we went out. Then I drank a few Blue Hawaiis, which turned out to be a terrible idea. I got sick all over the table at the bar. Our friend Marilyn helped me outside and stayed with me until someone could take me back to Lisa’s apartment. On the way, I remember someone warning me not to get sick in the car and handing me a small bucket just in case. Once we got to the apartment, Lisa took over and cared for me. She told me to take a bath, and thankfully, she had a bath chair that lifted me safely into the tub and back down again afterward. By then, I was sober enough to get myself dressed and go to bed.There were other strange moments too. Once, while we were heading back to Lisa’s place, she wanted to stop and look around in a shop that made me uncomfortable. I waited outside under the lights, but a few guys driving by shouted names at me, which felt especially strange since I had not even gone inside. Another time, a group of us was coming back from downtown when Lisa noticed her wheelchair battery was running low near another place I did not want to enter. I stayed outside while the others handled things. A man I knew recognized me and said hello, which caught me off guard and embarrassed me a little. For a moment, I tried going inside nearby just to avoid standing out alone, but I backed right back out almost immediately. I do not remember exactly how we got home that night, only that we did.Lisa always looked out for me and seemed to know what I was feeling before I said a word. At one point, I met a man from Texas and thought I was in love. We talked about marriage, children, and the future together, though I did not understand everything he was involved in. Then, the day before New Year’s Eve, while I was at Lisa’s making plans, she got a call from his roommate saying he was gone. We both asked, “Where?” and learned he had gone back to Texas. We were stunned. I asked him and Harvy to come to explain what had happened, but when they arrived, I barely remember anything they said. Harvy later took me for a drive to clear my head. I do not remember talking much at all. I just stared out the window until he finally asked if I was ready to go back, and I nodded yes.The next day, Lisa asked if I wanted to go next door because we knew someone was having a party. She thought it might help get my mind off everything that had happened. She told me that if I wanted to leave, all I had to do was give her a look, and we would be out of there in no time. We went, and I tried to enjoy myself. I think we stayed for an hour or so, but I just could not get into the celebration. Lisa looked at me and knew it was time to go. We went home, and before we each went to bed, we looked at one another and said, “Happy New Year.”No matter what is happening in your life, the world keeps moving. After spending some time in my own bubble trying to get over Tim, I eventually went back to see Lisa. By then, I could tell her condition was getting worse. She told me she felt safer getting out of her chair and sitting on the sofa when I was there. I encouraged her to keep doing it because I thought holding onto her independence for as long as possible mattered.As time passed, we both found boyfriends. Now and then, her boyfriend would bring Lisa over to my house. Eventually, Lisa moved in with him for one reason or another. I believe some of those reasons had to do with support and care.One morning, we woke up to snow in Bakersfield, which rarely happens. Meghan was still little, and my mom had bundled her up to go play in it. I sat in the doorway watching her, and I remember seeing Lisa there too, looking like she was enjoying herself. I think that was the last time I saw her. Later, I heard she had an enlarged heart, something I suspect had gone unnoticed for longer than anyone realized. She passed away not long after. Losing her was like losing part of the family. I will always remember what we shared and all the good times we had together.
Marilyn
The Lessons She Had Taught Me and Also Being A Great Friend Written In 2021
When I was a baby, my parents thought that there was something seriously wrong because I wasn’t able to roll over, sit, crawl, or let alone start to stand. So of course, they decided to take me to a doctor. As soon as he held me up, he asked Mom to look at my legs and how they crossed. He explained that I had cerebral palsy and that it may mean that she would need to care for me all her life. Well, Mom was so relieved that I was going to be okay, she took me over to my grandparents’ house to show what happened at that doctor’s and explained what the doctor told her. She even showed how my legs crossed and emphasized that I would be okay. I did learn to crawl and do small things, but for the most part, my Mom and others took care of me up until I was ten or so. I was able to learn to do things such as drinking out of a straw and pushing a walker. I learned how to do things that could make my life a little easier. It was during school when I met Marilyn. She also had cerebral palsy and we became close friends. It was to the point that some people would even think we were sisters because of our similarities. We liked playing together and oftentimes I would spend time over at her house. The first time I went over to Marilyn’s house I overheard her Mom say, if Kim needs any help, it's up to you to help her. In my mind, I thought if Marilyn could dress herself, then why couldn't I? So from that moment on, I dressed myself the best that I could, even if it took me an extra hour or more to do it. It was thanks to Marilyn that I wanted to be more independent and try to do different things for myself.
There were so many instances that I was so amazed by her. I remember a time when we had gone into her kitchen to get something to drink, I was wondering if her Mom was going to come help us. No, Marilyn walked to the refrigerator and took out the carton of milk and two cans of Pepsi, then she poured them together. To my surprise, I liked it. We often sat in her room just talking about boys and what we would do when we both turned twenty-one. We also shared thoughts about having our apartment and how we could go out to bars, and meeting new people, especially new boys. When we were in high school, Marilyn had a manual wheelchair and I had an electric wheelchair. So what she would do was hang on to the back of my wheelchair so I could pull her wherever we needed to go. Most of the kids that saw us thought, ‘There go those twins again’. Marilyn’s family was always really kind to me. I had long hair and I had thought about getting it cut before. But somehow my Mom was able to make me feel like I didn’t want to cut my hair. So when I found out that Pat, Marilyn’s Mom, was a hairdresser, I talked with my Mom and cut my hair. Grant you, I didn’t cut the back at first, I had her feather the sides and the top. That lasted for a while, then I had her cut the back into a bob hairstyle. Pat was a very nice person, she would have given you the shirt off her back if you needed it.
Marilyn and I had a lot of fun together. Such as the time we decided to go out to a bar called Roxannes; it was a country western bar that had a dance area. I had been there a few times before and always had a good time. One of my cousins was staying with us and was talking to my Mom thinking she could be of help to us in case we needed it. So Mom thought that it would be okay for us to go and if we did need some help, she would be there. Mom drove my cousin and me to the bar and Marilyn had her Mom drop her off. In the meantime, as we were waiting for Marilyn, my cousin had some drinks. I was waiting for Marilyn before starting to drink. Well, by the time Marilyn got there, my cousin already had too much to drink. When Marilyn came, she asked me where my cousin was and I said that she had gone to the bathroom. We were talking about ordering drinks, but before we decided to order, Marilyn thought she would go see what was keeping my cousin. When she went to the bathroom, Marilyn found her passed out in a stall. She then got out of her wheelchair to crawl under the bathroom stall to unlock the door. Marilyn managed to get my cousin back to the table. Marilyn had to find someone to call my Mom since this all took place before we had cell phones. Once Mom got there and assumed Marilyn was more intoxicated than she was. All Mom thought of was how Marilyn took valium, something we both took to help control our shakiness. While Mom was pushing and pulling Marilyn to the car, she was kind of scolding Marilyn for drinking too much. Marilyn and I both were trying to tell Mom that it wasn’t Marilyn. That is when she finally looked up and noticed that my cousin was barely able to walk to the car. So Mom took Marilyn home without her even getting a drink.
Now, when I sometimes wake up in the morning, I have some songs in my head that Marilyn would break out singing. One of the songs was Bad Boys, What Are You Going to Do When They Come for You. The other one was my favorite, which was Country Roads Take Me Home by John Denver. I would love to think she’s home now with her family and friends, doing things she may not have been able to do here on Earth.
Maria Lemley A Friend of Mine
Wednesday, August 31, 2022
When Maria and her family decided to move to Colorado. Jan threw a farewell party for Maria’s classroom. I wasn’t too happy about it. So when Jan later on tried to find a picture to put in a locket for me, she couldn’t find one picture without me crying. So we both had a picture with me crying and probably thinking this girl’s crazy.
When Maria and her family moved back to Bakersfield when Maria graduated from high school. She began going to Bakersfield College, which is where I found out that she was back in town. I remember that she needed some help with math, I’m not really sure why I got the job especially when I’m not great with math. Maria and her Mom gave me a chance. I would go to her house and try to figure out how to explain math when I wasn't that good myself. It did help me, she had a math program on her computer and it helped me more than I helped her. To completely understand the situation, Maria had cerebral palsy and one of the effects was not having the ability to communicate, so she had a board on her tray with the alphabet, so that she could spell out the words that she needed to use so she could get what she needed and wanted. This was before we had communication devices, if they were really low technology. Not like today that now you’re able to have a communication device practically in your back pocket. It’s not quite as simple for Maria and I because of our CP, but at least you get the point. Going back to what I was going to say. I believe it was around the same time. Maria and I were waiting for our bus to go back to her house. I noticed that she was looking at me with a look of concern on her face. I had explained that I would give the driver five minutes more, then I would go call the Get-A-Lift to see what time they would be there. I just didn’t want to leave and they came while I was in the office they would be driving in. Oftentimes, I would go to call to see where they were, while I was calling, they would come and go. After we got to her house, I had learned that Maria wasn’t really happy with me. She thought I was mad at her. And I said “no not at all”. I am sorry that you felt that way. Of course after we talked, we went and studied our math.
I do remember a time when Maria’s parents went out of town. Jan and John asked my Mom to come sit with Maria for the weekend so that they would feel comfortable for them and Maria as well. Of course I went with my Mom. We all had fun except when Maria had to use the bathroom, so Mom took her to help Maria into the bathroom. Somehow, Mom had Maria end up in Mom’s lap. I was in the doorway waiting for them to finish, so when it happened we all started laughing. Here was Mom holding Maria and trying not to laugh so she tried to pick her up so she could reposition Maria to lift her back up to sit her on the toilet which all was successful . I often wondered if Maria was thinking “these girls are crazy”!
John and Jan bought a three wheeler, we used to have a big field in the back of our property. So they came over to try it out and to give me a ride. I believe John took the bike for a ride first so he would know what to expect. He came back to put me on the bike with him, he tied a soft robe to put around us so I would not fall when he was driving. Of course, when you’re going up and down in a field that was full of dirt roads and has lots of bumpy hills that others had ridden before. And having a great time. You don’t expect to tip over backwards. John fell on his back, I fell on him. So he had to untie us so he could get the bike back up right, once he did that and got me back on the bike, we headed back to the house. Other than the fall, I had a blast. Another time was when John and Jan took Maria and me to Las Vegas. I’m not sure what the reason was, but I felt lucky to be invited to go along, which I was so elated about going with Maria. Since there were two of us in wheelchairs, each of them took one of us to play in the casino. Jan took Maria to play slots and John took me to play black jack, it was so much fun. Thinking back now, I’m pretty sure we went in November, because on the way home, Jan was reading to us the ballot so we all understood what we were voted for.
I was saddened to find out that Maria had cancer. Sometimes I wonder why things like cancer or other illnesses would take someone like that who already had a life that was difficult, but I suppose that’s up to God and what you believe in. Life is so precious and short. That is one thing about Facebook that I do appropriate, which is people can keep informed with what's going on with each other without being too worried about not infringing on their privacy. I would check Facebook on a daily basis so that I could keep up to date with what was happening with Maria and everyone around her. I knew it would be so hard on her parents. Jan would put pictures up on Facebook, especially the one with her looking up at her Dad, which was so sweet. It was too hard for me to hold back the tears.
My Mom asked me if I would like for her to take me to the funeral, I looked at my Mom to say that I don’t think I could. I realize out of respect, I probably should have gone; it’s just I’m not good at going to funeral’s. The day of the funeral, I was looking around to see what was on television and I came across the mini-series of north and south. I knew that Maria loved that series, so when I watched it all, I thought to myself, this one's for you!
Sometimes I wonder how we, the American people, let this beautiful country get into the mess we are in today. So many things could be the problem. Our children, our society, but we all have some blame to share. I don't know when we lost family values, but we want to return to being kind and compassionate towards our neighbors.
Technology has been a terrific thing, it has made my life easier, especially for other people like me who have physical disabilities. The biggest would be communicating with family and friends to be able to talk to my doctor or refill my medication, which makes me feel a little independent. Of course, with all the good sides to everything, there's a bad side to technology. People for the most part are good, but there are people out there who make it difficult because they want to use it as a weapon to hurt people by getting their information to either use it against you or try to earn your trust. I do like AI, I use it to help with writing, no matter if it’s an article or I’m emailing even on Facebook, it has helped me sound better. As many know, it can cause chaos in people's lives. That is why you need to make up your own mind and understand what is being said to make your own decision.
