“I’d like to do something nice for someone else,” I told my friend Shelby. We were on the way to school, and she had asked me what I was going to do for my 10-year anniversary of living with a spinal cord injury. November 16 was approaching quickly, and I was obsessing about it.
“What would you do?” she asked.
At the time, I was in the process of purchasing a new wheelchair accessible van and it seemed like an impossible feat.
“I think I’d want to raise money and buy a van for someone else.”
“Why?” she asked
“Because they’re ridiculously priced and it’s just not an option for most people, even if they have insurance,” I answered. It’s true. A new wheelchair accessible van starts at $80,000.
Fast forward to a month or so later, both of us had appointments with our Liberal Studies director at Rollins to discuss our thesis projects. I knew what I wanted to do; I had set-up this web site years ago with hopes it would become my graduation ticket. I was surprised, however, when Shelby asked me, “How would you feel if I used your van idea as my thesis project?” I was stunned that someone wanted to take on such a project, nevertheless do it in my honor. I was also unsure how this could fit into the guidelines of our creative thesis requirements.
“Are you serious? I’d feel awesome,” I replied. Shelby is like the unnamed Mayor of Thorton Park. If anyone could pull it off, I knew she would be the one.
“Great. I’m meeting with Dr. Smithers in two days.”
Since that conversation, Shelby has titled the fundraiser Project Vandalism; she’s established many events to raise money for the cause; she’s connected almost everyone that lives and/or owns a business downtown to the project (including Mayor Dyer); and so far, she’s risen over $10,000. My little idea has turned into a two-day, three-ringed circus and the thought of this overwhelms me. I cannot think of a better way to say, “Thanks everyone, and the community, you have given me an excellent ten years and now I’d like to pay it forward,” than to raise money and buy an accessible van for a deserving family.
Part of Shelby’s thesis is that she journals the PV events, but also that she journals what she learns about Spinal Cord Injuries (SCI) along the way. So I took Shelby to a SCI support group meeting at Lucerne Hospital (I didn’t think it fair that I be her only model. After ten years, I am very acclimated to my injury, spoiled even. I was also injured on the job, therefore, I’ve always had my own van—my own everything for that matter.) I had tried to prepare her for what she was about to see, but it’s usually not possible, not even for someone like me who has personally experienced it. Persons that are newly injured and their privacy are violated in such a way, that they will share their new feelings of desperation and frustration with anyone, even strangers. Their appearance also can be shocking. They are shaking, from shivers or unwelcomed muscle spasms; they’re legs are wrapped in bandages like mummies to encourage blood circulation, they are bed-bathed but not showered, gowned, pale and overall, sickly looking. Within minutes of the support meeting starting, I looked over at Shelby. It was already too late. She was shaking her head at me, sobbing, but obviously trying not to. I had expected that. What neither of us had expected was to meet the family we would eventually want to purchase the van. As quick as we exited the hospital, Shelby blurted, ‘We have to buy the van for Dejon.’ I answered without hesitation, ‘I know.’
Dejon and Angela have been boyfriend and girlfriend for over ten years, they’ve been a couple since the young father was just 13. They have a 7-year-old son together named Tony and a one-month old girl named Liliana (The newborn came days after we met Angie.) On June 14, 2008, Dejon was in a car accident that left him a quadriplegic, paralyzed from the chest down, with little to no movement in his arms. As he told us his story, we were captivated by him. It wasn’t necessarily the way he was injured—because everyone who gets injured has a good story—but were impressed by his overall attitude, his will to live and his unconditional love for his family.
This interview was conducted in the living room of Dejon’s apartment; it’s the only room that his tilting power wheelchair fits in. Like other out-dated apartments, the doorways are too small for his machinery and new lifestyle. While I interviewed Dejon, Angie sat on the couch holding Liliana and Tony sat on his father’s twin sized hospital bed watching attentively. I’m often asked the reasons why we chose this family, and I hope this interview showcases that. More than an explanation though, I hope this interview is an inspiration for more community projects like PV. It’s as easy as starting with a simple idea, and then finding someone who believes in it. Thanks to everyone who has contributed to Project Vandalism, and thanks to Shelby for believing in me. Being a part of this whole process has become another reminder of why I wake up each morning; and also why I love living in my community.
Jana: To begin, will you please share the story of how you got paralyzed?
Dejon: I was out driving one day with a friend and we went to another friend’s house. We cleaned out the car; then got in the car and I said [to my friend], ‘I’m tired of driving. Do you want to drive?’ He said, ‘Yeah, I’ll drive.’ We were in a Pontiac Grand Prix, 2006, Saturday afternoon. We went to Wendy’s, and then my friend had said he had some running around to do. I wanted to go home and chill with my girlfriend. So I told him, ‘Let’s go get your car so you can go do your thing.’
I guess he had a girl waiting for him or something, because he was real anxious to get to his car. He started driving really fast; I didn’t pay it no mind though and just laid my chair back. I told him, ‘Wake me up when we get to your house.’ And we never made it to his house. When I woke up, I was in ICU.
When you woke up in the ICU, what were the first thoughts to come to your mind?
‘What am I doing here?’ I kept hearing, ‘Beep … beep … beep.’ I saw tubes everywhere. I saw my girlfriend, Angela. She said, ‘You know I’m going to be here everyday, right?’ I saw my grandmother. She said, ‘Dejon, do you know that I’m your grandmother?’ I tried to talk but I couldn’t. I was wondering why I couldn’t talk; then I just went back to sleep. I woke up again and saw a bunch of friends. ‘You alright man … you going to be alright,’ [they said.] I went back to sleep because I couldn’t talk. I tried to get up outta that bed, but I couldn’t move. It was a weird feeling.
The reason why you couldn’t talk was because you had a trach in your throat?
A ventilator, yeah.
At one point did you realize the seriousness of your accident?
Probably like a week after being in ICU. When the nurses [originally] told me, I didn’t believe ‘em. They kept saying, ‘You’re paralyzed and you might need a ventilator for the rest of your life. You were in a bad accident.’ I kept saying, ‘No, no!’ I kept trying to spit out the tubes and moving my head—all I could move was my head and shoulders then. I wasn’t moving my arms yet. They had to hold me down and strap the tubes to my mouth.
Angie told me, ‘You got in a real bad accident. You’ll be better after awhile, but right now, you have to be like this.’ I kept asking her, ‘Why can’t I feel anything? Why can’t I get up?’ One of my friends asked, ‘When you were in ICU …’—I was in ICU for twenty days—‘you woke up and your eyes were so big and wide. Why?’ I said, ‘Because I swore it was a dream.’ I was in shock. I never thought this could happen to me. Not me—not Dejon.
Is your injury permanent?
[Pauses] Yeah … I think so. They say I’m a C5-6. I don’t really know too much about it; I’m just now learning what it all means.
When they told you that you were paralyzed—and it had soaked in—what thoughts came to mind then?
‘How am I going to get through life like this? How am I going to get around? What are people going to think when they see me? How am I going to take care of my kids? Is my girlfriend going to leave me?’ There’s a bunch of thoughts—a million thoughts.
How are you coping with it?
Every day gets better. I don’t cry anymore because I’ve accepted it, but it’s still hard. ‘Babe, can you turn me over? Can you fix the pillow?’ You know? I’ve always been independent and now I have to ask for everything I want. ‘Can I get a drink? I’m hungry; can you feed me?’ You know?
Yes, I know—I do know.
What did you do before your injury?
Work—I was a welder.
How has being paralyzed changed that aspect of your life?
My hands aren’t working right now; I need to get my wrist extension back. Maybe if I can get my wrist back [and functioning], I can work. But right now, I can’t hold a rod—or anything for that matter. And the heat, I probably can’t take all that heat now. So yeah, it’s changed; I need to find a new trade.
Can you tell us what a typical day is like for you right now?
I wake up—depending on what time I have therapy—and Angie gets me dressed; she gets me breakfast; she brushes my teeth; she helps me get in my wheelchair. Then, she gets Liliana ready; feeds her. Then the bus comes and I go to the rehab center. I do two hours of therapy everyday. I wait for them [Lynx transportation] to pick me up; I come home; I watch TV and talk on the phone; I go outside and ride around the neighborhood; I come back in the house; I talk to Angie; I get put in the bed; and then I do it all again tomorrow.
What are you going to do when therapy ends?
Just try to get stronger by working out. I’m going to find resources and network; I need to find out about people like me. I’m going to try to find a job, something I can do. I got to keep moving forward. I’m already on the bottom step, now I just need to keep climbing up.
What is the most frustrating part of your day?
Asking Angie to do everything. It’s frustrating because she has the baby—she has to take care of the newborn baby—and she has Tony, but he can basically do things on his own. She has to keep him in line though. Then I have to ask her to get me up and put my shoes, my pants, my shirt on, then get me in the chair, get me something to drink … it’s frustrating. Sometimes I’m thirsty or need something when she’s helping the baby—but I’m going to let her do that—that baby comes first, you know? It still frustrating that I can’t grab the cup and get me something to drink, or go in the kitchen and cook me some food while she does that.
Nevertheless, you probably want to help her with Illiana.
Yes! I can’t just hold her and say, ‘I got it for right now. Go take a nap … or a bath.’ You know?
Now that you’re paralyzed, what are the things you miss the most?
Walking around and running with my son, driving around, going up stairs—it’s the little things—standing up in the bath, jumping on my bed or throwing myself down, legs off the bed, rolling around—I miss that stuff.
Can you describe what it is like to use the Lynx transportation system?
It’s the worst. Lynx—you have to be ready an hour ahead of time, two hours ahead of time from where you’re trying to go. They come whenever they want to come. If they set a time at 1 or 1:30, they might come at 2—and you just have to deal with it. It’s the same thing after you finish what you’re doing, they may be there an hour late or twenty minutes early, but you have to be ready for them.
Have they ever left you behind?
Yeah, the very first day. I wasn’t even in therapy yet, but I had to go to the doctor. The guy asked, ‘How much people are there?’ Angie told him, ‘Two—me and him, but I also need to bring my baby; I have a newborn.’ He said, ‘The baby is a passenger too, you’ll have to pay for it.’ We said, ‘OK.’ But he didn’t think there was room, at least that’s what he called and told his boss. My brother was here, luckily. So he was going to go with me instead. He [the driver] said, ‘Fine, you have five minutes to get out.’ I didn’t have a shirt on. Once I got that on and was to the ramp [at my front door], he was already putting his ramp up. He said, ‘Your five minutes are up and I already called in a no-show.’ So we had to call for another ride; and he left. It’s very frustrating.
Especially considering how long it probably takes you to get ready in the morning.
Yeah. It takes an hour, and that’s just to get the wrap on my legs, my shoes, pants and shirt on.
What would it mean for you and your family to have your own means of transportation?
It would mean the world. We could go out when we want to. We can go places, like out to dinner. We wouldn’t have to pay for a Taxi or wait on Lynx. We could get around when ever we needed to—it’s freedom all over again.
How have the kids adjusted to your injury?
Liliana doesn’t know much right now, and Tony, he’s been a real big help. At first he wanted to know where his Dad was at, when I was in ICU. He asked, ‘Where’s my Dad at? And why isn’t he here on Father’s day?’ Now, he’s just a big help. I’ll ask, ‘Babe, can you put another pillow under my head?’ But Tony will come running to do it. He says, ‘I know you’re going to get better Dad.’
Liliana and Tony
Tony, what do you think about your Dad and the things he’s going through right now?
[He smiles real big.] I think he’s funny … and he asks me funny questions.
[I turn back to Dejon] And what about Angie? Where do you think you’d be without her?
I don’t even know. I ask her that all the time. ‘What would I do without you? What would it be like? Would I strive to be better? What would I do? Who would help me? Who else would do this for me? Would I be in Florida? Where would I be? What would happen to me? Would I be in a nursing home?’ I always ask, ‘Where would I be?’
Do you have family here?
Brothers and sisters—the rest are in New York. They wanted me to come up there so they could help me, but every building that someone in my family lives in has stairs, except one. Only one building has an elevator. It’s not wheelchair friendly at all. I’ve told them Angie needs help, because we don’t have any other help—no nurses or aids … nothing. They said we can come up there but I don’t see how that’ll work with one aunt having an elevator. I wouldn’t be able to see my grandmother, unless they lifted me up stairs. That’d be too hard.
If you don’t mind me asking, what is your financial situation right now? And what kind of strain has put on your family?
A big one. I used to help; it was me and Angie. We both worked. Now she does everything; she carries the whole burden on her back.
And she’s taking care of all of you?
She’s taking care of all of us—all three of us—all by herself.
What are three things that you think people should know about spinal cord injuries?
One is that you have to be strong. That’s the first thing—to be strong and don’t give up. The second thing is you have to learn to adjust. It’s a different life, but it’s a life and you’re still around. The third thing is to be patient. Everything isn’t going to happen in a blink of an eye, even though we got injured in a blink of an eye, we’re not going to get better in one day. You have to be patient, and patient with the people who are helping you because they don’t have to do it.
What inspires you to keep getting out of bed every morning?
My kids—that little girl Liliana—she makes me get up and push. When I’m at therapy, she looks at me with eyes wide open and I push myself. I have to get better, just for her … Tony … and Angie—they make me.
If you could go back to your able body—like back before any of this happened—what’s the first thing you would do?
Hug and kiss Angie; throw Liliana up and around my neck; tell Tony, ‘Let’s race;’ I’d take a long shower; dive in a pool … I’d do a lot of things—that day would never end.
Is there anything you’d like to say to those who have donated to Project Vandalism?
I’d like to say thank you. Even though I don’t know you, I love you. Thanks for helping me out; thanks for even just the thought. When you had called to tell me that you wanted to donate a van to me, I asked Angie, ‘Why are they donating it to me for? Because I’ve never won anything in my life.’ I always lose win I gamble. So it’s a blessing. Thank you—thank you to you, and everybody, for everything they’ve done … every penny.
And will you be at the party to celebrate with us?
I will be there … probably the first one there … I have to get there early, you know? [Laughs]
*Interview Date: October 18, 2008
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