Back to School After a Spinal Cord Injury: Personal Experiences with Paralysis

Going back to high school was challenging. On a good note, it was great to be back where I saw my friends every day, and going to class made me feel a sense of normalcy. The challenges were figuring out how I was going to manage my care needs with an ambitious class schedule, and a challenging and rigorous class schedule. I ended up coming in late so I had time to do my personal care in the morning, and I was tutored individually in math, and I ended up doing summer school every summer to graduate on time with my class.

The middle school that I went to was a newer building, so it was already completely accessible. And I had been volunteering the year before in the special needs room, just helping out because there was a mentally-challenged kid in one of my classes, and so I started volunteering during my study hall. So, I actually already knew the special ed department, which was a huge help, I am sure. Also just comfort-wise. 

It was a small town, so it was almost a parade especially in a wheelchair. So, I had friends wanting to push me and I said, “no you can’t do it because I could fall out if you push,” different things, so it was a learning experience. But it was easy because there were 60 people in my graduating class, so we all knew each other, and it was more just going, I say “back home.” One of the funniest things is in biology class, the teacher had a skeleton and said, “we’re going to learn about the spine.” And I raised my hand and said, “can I teach it?” And reluctantly, she goes, “sure.” So, I got to lead the class on that—what happened to me, how it affected the different body parts. And that was one of those an “aha” moments to me, to be able to share that with my other peers and friends in the classroom, as well the teachers. Because in the small town, there were no other disabled people except elderly, who may be in a wheelchair, or someone who may have been severely disabled and living in a nursing home. They just didn’t exist there.

It was very difficult for Nico to go back.  So on one hand, he really did want to go back.  On the other hand, prior to his accident, he had been a star athlete.  He was a varsity soccer player, varsity golf player, he was a child that could throw any ball of any kind, and it would go exactly where he wanted it to go.  So, to go from being this handsome, popular, mega star, to someone in a wheelchair was very, very difficult for him.  He felt like he no longer fit it, like he was no longer part of the group.  I think the group made an effort to reach out to him, I think they did see him differently, but they did kind of try to accept this new person.  

I started to go back to school.  At first it was one course, and I do have to say that as things got better, I took three courses per quarter and today I have my degree.  

I was primarily the only person in my school with a disability, the only kid in my class with a disability. I went through, my mom—my parents were really strong believers in education, so they had me mainstreamed in a public school since the second grade. So, from second grade all the way through high school, I went to public schools.

It was a little different. Kids that I didn't talk to a whole lot before my accident didn't talk to me at all, because it was a very small school, like my graduating class was only 60 people, so they didn't know. I was, like, the only kid definitely that had ever been through anything like that in my entire town. So, nobody really knew what to say; they were kind of nervous to talk to me, they didn't know whether or not to say "hi," or just leave me alone or—so, the hardest thing was just people not understanding what was going on.

So, school was fun.  I dropped out when I had my injury, and I was like, “The heck with everything, I’m so pissed off.” You know, I had a sour, like, really bad attitude.  Like, “What am I going to do for work, go lick stamps?”—“Right, come on?” But after working doing different entrepreneurial ventures for a while, after the dotcom bust, Faith was like, “Darren, you obviously have a lot of energy and a lot of creativity, you’re obviously over your injury a bit.  Time to stop farting around with entrepreneurial stuff, and go back to school.” So I said, “Fine, if I’m going to go back to school, I still don’t know if I can do it, I want you to go back with me.  ” And she was in court-reporter school at the time when I had the accident, and so she’s like, “Yeah, I’m ready to go to school.”  So we went first to community college, and she was my note taker, and we took the same classes.  And, I found that we had a lot more focus than I had as a kid, when I had my injury.  So we were able to do just, like, really well.  So then I transferred back to San Diego State, finished off my bachelor’s degree.  She continued with me as a note-taker, and then they have, you know, proctors for the tests, and stuff.  So, the proctors would do the testing with me.  And, I found it, with of course Faith’s support doing the notes, it was really pretty easy.  But again, I was still so self-conscious of being in my motorized chair, that I actually did all my school in a manual chair.  And so, at San Diego State University is really hilly, and here, poor Faith lugging me around and pushing my chair around like crazy.  You know, it was a good workout for her, I guess, but at the same time she was much happier once I got over the chair thing.  

I got back in the hang of going to school. People used to fight over pushing me around at school, which was fun. I still did normal classes and everything, so it was fine.

He went back to high school, he did graduate from high school, and then he went to college.  He attempted to go on campus; he had some wheelchair issues, so he’s now in-between.  He goes online some, and he goes to campus some.  

Well, my school was at the time 35-years-old, and so they did—going back, there wasn’t a lot of accessibility. Like, I had to get my own key to an elevator to go up to classes. And I’ll never forget like they wanted to move my stuff downstairs and I was like, “I want to be normal, I don’t want my teacher to have to relocate just because I’m in a wheelchair. Why can’t I go on the elevator?” And they were just so protective of stuff like that. And the ramps, there were ramps, but there were lots of steps, so I would have to navigate a different way around the school. It was difficult at times because things weren’t accessible. But they learned quickly to make things accessible and they did a good job. I missed two-and-a-half-months, and when I went back to school my teachers were amazing, a lot of grace, a lot of grace and I appreciated that. I did graduate from high school on time and it was a great graduation. It was different, you know, rolling across the stage, but it was really a fantastic moment.

I tested, and I tested very poorly.  So, I had to take prerequisite courses in order to get to a college level to stay in the program.  English 098, 99, 100, 101, math.  I stayed at community college, I graduated with a Certificate in Addiction Studies, and then I got hungry.  I stayed and I got an Associate’s Degree in Applied Sciences, and then I got really hungry.  I went to Hahnemann University, and I got an Undergraduate Degree in Mental Health Technology.  And then I said, “Wow, why not keep going?”  So, I applied and was accepted to the University of Pennsylvania.  I got a Masters Degree in Social Work, and I’m licensed in both Pennsylvania and New Jersey to do that kind of work.    

I was in my senior year in high school when I got shot, so I was actually able to graduate on time. Because I, even though I was a knuckle head out on the street, I managed to keep a pretty good GPA, you know, and get all my credits. So, that same year after, you know, I got shot in May; I was out of rehab by July; I was in college by September.

He is now back to school but he is driving himself now. What is he studying? Computers, programming. He had been in marketing, and now he said if I’m going to be in a chair, computer programming is a good course for me to do.

It was daunting in my mind, but as soon as I went to my first class, and just sat in on the lecture, and I was able to take notes on my own and complete my first assignment, I realized I can get used to it. It broke down into a pattern, and patterns are very helpful tools to live with. It just simplifies things when you can know that “this is what I am going to have to do today.” And, “I will probably do the same thing tomorrow.” And, it just continues, and it’s very helpful to know that there is structure and school gave me a lot of structure. In fact, I think going to school and the structure that it provided actually made my transition from hospital life to home life considerably easier. Because it gave me something to get up in the morning for, and something to keep my mind busy and active.

That took me a long time, I mean, because in high school I was barely going to pass. I had just gotten out of rehab, and I missed a lot of school because of prior drug use. And you know, right now I’m doing online, and I did get my GED, which I got honors on, which that was good. And you know, I struggled with it, I am struggling with it because I did online, and I don’t think of myself as disabled, therefore, I didn’t think I would need anything online. But when everything is timed, it’s going to take me longer, and you do have to give yourself that help of setting up disability where you do get extra time to take tests. And let your teacher know and just be open about it.

I was in rehab for five months, went back to my parents, started thinking about “am I going to go back to school and if so, where?” “What kind of support I would need?” I was not driving back then, in fact I had a van, and I had two 2x10s. And so, you would open the van doors, and put the 2x10s in, someone would roll me up in the van, and then they locked me down with bungee cords. So, after hanging around the house, and making lot of puzzles, and learning to shoot a bow and arrow, and do some things in the backyard, I kind of decided to go back to school. But what really kind of—the impetus for that was my brother was coming back from Vietnam, my older brother was coming back from Vietnam, and he was going to go back to school. And so, he said “I’m going to go back to the local community college here, you want to go back?” I said “sure.” So, he became my driver, and support system and so I went back to the community college. And then I changed my majors. My dad worked for General Foods, he sold Jell-O. And so, I was just going to follow my dad’s footsteps—you get a BA or something, and then you go work for a company that tells you about their products and you go sell it. So, I changed my major, and I decided I wanted to be a junior high school counselor. And the reason was you do a lot of thinking when you’re in a hospital, and when you’re in rehab, and you’re at the house for a while. And so, I started thinking about “when did I make decisions?” And I figured it was when my voice changed, and hair started growing on my body and that was junior high—I think they call it middle school now. So, I decided to get a master’s in education with an emphasis on guidance counseling and being a junior high school counselor.

She really wanted to get back to school. Those were her friends, that was her peer group. She was injured in the summer, and the school arranged for a couple of teachers to come down and tutor her in the hospital after school, so she was able to keep up on a few of her classes. The support we got from her high school was tremendous so, she, and the teachers were great. She didn't have a lot of anxiety about going back, she was really looking forward to going back. She only took a couple of that first semester because it took a couple of hours just for her to get ready for school in the morning. That took a long time and she was very tired, but she was happy to be back.

I didn't go back to my original school, because the school that I started off in wasn't accessible. When I went to this new school, originally I was thinking about dropping out. I was thinking about dropping out because the way I looked at it was like, you know, "This isn't for me"—"I didn't want to go to this new school." And, my grandmother basically told me, was like, "Well if you, you do drop out, you will have to find another place to live." Knowing I didn't have any other place to go, I didn't have a choice but to go to school, and I'm glad she told me that, you know. So, I did finish high school. When I went to this new school, I did, my first, my initial reaction was like, "Oh wow, it's not as bad as I thought it was going to be." Because I thought everyone was going to be in wheelchairs, I thought everyone was going to be, you know, handicapped, and I didn't want to go to a school like that, I wanted some diversity. And, that's what I, when I came there, I saw these people walking around, and I was like, "Hey, I, look I can do this."

It was three months after my accident when I went back to school, and that was in Austin (Texas), where my family was over 500 miles away, and I had no one other than good friends that were close to me. Going back to school, I honestly believed there was a part of my mind that thought as long as get back there, then everything will be fine again. You know, that if I can just get back to the way my life was before my accident, then everything will be magically the same. And you know, to find out it wasn't, and that it was much harder to adapt to the world and for people to adapt to me, you know, a lot of things. It was very hard for friends to see me sometimes, to see me struggle with learning how to live in the world because everything is different, you know, and it's nice to say that you know, "oh, you're just sitting down, it's not that much different," but ,you know, it's an adjustment, it's a big adjustment.

Well, at first we home-schooled him, because I home-schooled him in the mornings, and then did three or four hours of therapy in the afternoon. And so, that's what we did initially, and Danny has a real optimistic, a very good demeanor, a very happy demeanor, and maybe we were being a little bit protective of him too because of that. Sometimes in school and classroom settings, I feel that kids can be very cruel, and I wasn't really wanting to see his wonderful attitude and outlook squelched, so we home-schooled him for awhile. But then in second grade, we kind of put our toe in the water and we had him go for a couple of classes, and he was very well received and he did very well with those couple of those classes, and so the following year we put him in full time.

I was really excited to go back to school.  From the beginning, I wanted to stay up with my classes so that I could jump right back in.  And, I was really excited to just kind of, hopefully, slide back into the normal high school routine.  I was a little nervous about—I felt like everyone knew who I was, because I was the only girl in a wheelchair at my high school, and I was a little nervous about that.  And, a little nervous about how people would treat me.  But, I kind of decided that if I just went in and acted normally people would be normal towards me, and it worked out really well.  My high school friends were great, and they did a really good job making me not feel like I was a pain to hang out with or anything.  They used to argue who would drive my wheelchair, and get to push me, and carry me in and out of buildings.  That was really good of them, they were good to me.  My teachers were good.  My high school was really accommodating, and they sent teachers to the hospital to tutor me while I was there.  And then, they helped me arrange my schedule when I got back to school, so I could leave early to do therapy.  All my teachers were just really nice, especially with extra time on tests, and things that would take me longer, everyone was really understanding.  Yeah, I graduated on time.  It took a couple years of summer school and I did one class as an independent study.  But, I graduated on time with my brother and my friends, so that was good.

It was hard for me to get back into my high school. My high school really didn't want me to come back; they wanted me to go to a different school, not even in my district that had a population of students with disabilities. From my high school, there were no students with disabilities, so when I wanted to go back to school, they were like, "really, you're sure? It was a long road, it was a lot of fighting with them to get me back in—meeting after meeting after meeting with all the administrators and everyone else to get me back in.

Going back to school was one of the toughest things in my life. Because seeing everybody doing the things I used to do just killed me inside. And even seeing the boyfriends and the girlfriends walking with their fingers interlocked, I realized I couldn’t do that anymore. I mean, what’s she going to do, put her hand on my shoulder and push me? So, it was a reality check. The simple things—putting bags and stuff, and your books in the locker is so difficult for me, so I carried a backpack on the back of the wheelchair that carried all my books. For my junior year, since I was 16, I only went a half-a-day, and my senior year I went a full day. But, just eating lunch in the cafeteria, I wouldn’t do it. I felt like a freak, so I went into my coach’s office, and ate there during the lunch, and I did that for the entire year so no one would see me. I graduated on time. I was given a choice to either to skip a year and graduate later, or get tutored in the beginning and then graduate with my class. And that’s exactly what I did; I got tutored and I graduated with my class.

After the commuting, after one semester of commuting, she decided it was time to move on to campus and really go to school. She did that, moved into the dorm, lived in a dorm room by herself with her personal assistants that would come and go. And then unbeknownst to us, prior to graduation, she found herself an apartment. We didn't know that she wasn't going to be coming back home, and moved into the apartment—before she had a job—found a job, and has been living independently since then.

When I first decided to do it, it was a half-a-year in, and I tried pushing around every day, and I was like, “I’m not ready for this.”  So, I had to wait another half year where I was a little bit stronger and felt a little bit more confident with myself.  And then I went back, and I did an online class to start, and the next term I actually went back to classes.  My mom actually works at the college that I go to.  So, I would go to classes and she would come to help me whenever I needed help.  I was kind of really wonderful.  I graduated Drexel with a degree in Business and Engineering.  

School was hell, oh yeah, school was hell. Trying to get, just learning how to move your fingers over again, and now you have to catch up on school work, which means that’s a lot of writing. My writing was sloppy to being with, so now it was worse. So, trying to catch up with I think it was 18 weeks of work, and then trying to stay caught up with the work that you’re actually doing was a headache. And based on my past of gangs, and how I used to behave prior to that, some teachers just by watching me or observing didn’t like me. So, I went through a lot of trouble as in trying to get to make-up work. I would have to ask every day, and they would give me portions, but never would give me all of it like I asked so I could just do it. So, I went through a lot with that. But all the teachers gave me my work except one. And so, she gave me the hardest time to make-up work. So, eventually she gave me all my work, but she would never give me my tests. And so, when it got close to like the end of school, she’s like, “you know you haven’t took your tests, right?” I’m like, “I’ve been asking for it every day.” And so, she gave me all my tests like in one day. And so, I had to sit there and just take tests. And that was geometry, and I basically had to teach myself geometry because I wasn’t in class the first 18 weeks. I was upset because in math I love math, I mostly made hundreds in all my math classes, and that’s the one class I got a C in and it broke my heart, like it destroyed me.

He had a very hard time adjusting, very hard time. These were kids he played ball with, he did everything with. Now, he is in a 400-pound wheelchair and they're bumping into him, he's bumping into them, he's got the ventilator on, his hoses are getting bumped, and it's hurting him, he can't write anything, he's got to have a teacher's aide follow him around, plus he has to have a nurse follow him around. He has no privacy time; he can't go into the bathroom and joke around with the little boys like he used to. And so, ultimately he wound up having to have a rod placed in his back. At the time that happened, he begged me not to go back to school. And, he was seeing a psychologist even for all of his issues because he became very angry, his grades dropped tremendously, and we decided together as a family, that it was best not to put him back in school.

So, for me it was first getting connected with the Disability Services. So, they basically just navigated it all for me, they were the ones who suggested all the major accommodations that I needed. So, that just made school in general a lot easier. And I was already a really good student, so going back to school was just, it was a lot of fun, I really enjoyed it and gave my mind, I mean it put my mind at ease. It helped me just like kind of stay focused, and like I said, focused on each-day-at-a-time so that was really good.