Common Fears After a Spinal Cord Injury: Personal Experiences with Paralysis

Having to relearn everything, I mean, you have to learn how to take care of yourself differently. You have to learn how to go to the bathroom, and take care of yourself and go places. At first, it’s such a shock and scary. I was blessed I had a lot of family support and everything.

You feel alone. You really do in the beginning. You feel kind of separated from the world especially when you’re in a hospital and by yourself with just the person you’re hoping gets better one of these days.

My greatest fear?  I guess just going back home and going back to society. And, how I’d be looked at in the world and how everyone else would see me now.

My greatest fear was that I would never be able to play sports again. I had been a big athlete my entire life, and I was quickly given information about adaptive sports. I didn’t know if that was going to fulfill me the same way playing sports prior to my injury did. But, I ended getting involved in wheelchair ice hockey when I was in high school, and that was really awesome.

Losing my independence. I mean, I was an independent person before I got injured, and when that happened to me, I lost my independence, and I had to depend my mother, my brother and some of my friends—just for everything. And a lot of them, you know, eventually left my life so, you know, I was very shattered.

Everything. Public, facing the public. I remember my first outing was to a movie theater, and I was terrified of being seen out in public like this. Luckily, I happened to be the only one on that outing somehow mysteriously, so it was just the therapist, me, and my mom. And it was in the middle of the afternoon, and we saw a movie that apparently no one else wanted to see. So, that helped break me in a little bit, facing the public was really difficult. But other than that, I was afraid of everything. I was afraid to stretch out my arm in front of me. I mean I couldn’t do this without feeling like I was going to topple over. Everything was scary.

The unknown because you really, laying in the ER, and then taking another ambulance ride to another hospital. It’s just “what’s next?” and I had no idea. And after the surgery and starting rehab, I thought, “oh well, this will get better, I’ll be able to play baseball, and bat, and walk, run first base with the bat as a cane to get to first base.” And I was a catcher, so squatting wasn’t going to be a problem, I’d just be able either kneel on the ground or squat. And, in my mind that was going to be my future and years later, I mean, I found out it wasn’t. So, it was ever-changing. But being so young at 14, you don’t know what to expect, you don’t know what’s next, but I also hadn’t experienced enough to say, "oh, I can’t do something.”

The first response was that I wanted her to live.  The second response was, “What was this going to do to me?”  Because, I was going to have to do a lot of things I wasn’t prepared to do.  And, I didn’t even know what they all were.

Probably falling, and then like losing friends and stuff. Like I lost a whole bunch of people afterwards, so I wasn’t ready to cope with that. But being here at Shepherd is would help me cope with them being—I was here for six months, so it kind of helped cope with that.

I just didn't know what was next; what I would I be able to do. I remember being afraid that I would never be able to be alone in a room because I wouldn't be able to do anything for myself, which was just not true, because, then you know, a couple of weeks later I learned all of the adaptive technology and everything but, I think, just being afraid that I would just not have any sort of life.

I had a pretty good mindset right away after my accident. I'd say the only thing that really hit me right away was probably me worried about never having children or having sex again. So, I was a little worried about that, definitely, and the way my family would take it.

The next day, the next day.  I mean, literally how, what was going to be the next thing that I would have to go through?  You know, what were the doctors going to tell me?  You know, what, am I going to make it through the next day?  You know, will I survive this, you know, traumatic experience?

That he wouldn't make it—I mean, that he just wouldn't even live. This happened just before his 20th birthday, and he was really beginning to pull himself together, and grow up and get some ideas about life. And it, this just happened right then, I thought just, "This is just a tragedy," that's what I felt.

I think the biggest thing was when I was injured, I had, my oldest son was five and didn’t live with me at the time. I was actually working remotely, and he lived on the East Coast, and the ramifications of not being able to do certain things with him probably was at the forefront of my concerns. Again, with no, little to no understanding of what life would ultimately be like or what could be like. “I can’t do certain things, therefore how am I going to do certain things for him?” And that probably was the biggest aspect that jumped out at me at first.

The chair, especially being in a motorized chair, because I was super athletic, and really into sports, probably a bit vain.  And the idea of, you know, being , like, some tweaked-out guy in a chair, that can’t even push his own wheelchair, was just really, like, a terrible fear for me.  I’m pretty much over it, but it took a long time.  I mean, it took years. 

I was an athlete back before, in my able-bodied years.  I was a runner, a cyclist, an extreme sports mountain climber-motorcycle racer; I was also in the military.  So, I did quite a few things.  Type A personality, adrenaline junky, all that stuff.  So going from that extreme if you will, to what I thought at the time was just a guy that’s in chair, being a “gimp” if you will, doing nothing near that sort.  

That he would not live a full life.  That he would just stop and be disabled, and that’d be it.  

I suppose the change in identity that clearly was happening from the moment of the injury. I mean, you knew that your life was not going to be the same right after that. That's just—you hit a fork in the road and all the sudden you're traveling down a path that you never anticipated, and there you are; and there you find yourself.

Once I was aware of what was going on. I couldn’t feel my legs, and it was really hard for me to touch my legs because it was really weird that I couldn’t feel them. They were there, but really, I was very squeamish about touching my legs at first when I realized what had happened.

I broke my back two weeks before I graduated from undergraduate school. My greatest fear was, "what was I going to do for the rest of my life?" But, that would have been a fear I would have had anyhow, because the degree I had was not very specific, and did not lead to any particular vocation. I would have been worried about that anyhow, and I think that helped me, understanding that the timing of this accident was fortuitous in the sense that I was making a major change in my life, now I had to deal with a disability on top of it. But I was still making that major change, and so it helped me through that process.

I could deal with what I had to deal with I thought, but I feared for my family and the future of my family. I had a fairly new business, “What would become of my business, therefore my house?” You know, my wife, my daughter, a lot of fears. The relationship, the finances, it all was just overwhelming.

My greatest fear was—I’m smiling now because I’ve conquered that fear—but my greatest fear at first was I didn’t know if I would ever be able to have children. That was like my first question to the neurologist, I was like “can I have kids one day?” And I was 17, I didn’t, you know I wasn’t even thinking mom-hood. But in my brain, I was like, “okay wait, if I’m paralyzed can you still have children?” because I knew one day I wanted to be a mom. And so, he said “yes,” and I was like, “alright, let’s do this.” Like I was just, I was okay with it from that point on. 

“How am I going to do this?” You know? But I just resigned myself to “you know what, if I have to be in a wheelchair, I’m going to be the biggest badass at 45-years-old in a wheelchair there is.” So, I just kind of resigned myself to “okay, what’s next and how am I going to make the best of this?”

Not being able to get up and go to work every day. You know, kook out the window, see the sun come up and be stuck in a bed. You’re trying to get out of bed and you can’t.

My greatest fear was that it was going to prevent my brother from doing some of the things that I knew he wanted to do in life, based on his own fear. I knew that he would be capable of them, but I don't think that he knew that he'd still be able to do so many great things with his life. Such as—I knew that he wanted to have children, and I knew that he wanted to get married and I knew that he wanted to have a great job, and I think that he thought that the spinal-cord injury was going to prevent him from a lot of those things.

Not too many fears. I think I was a little bit more proactive than anything. I had a very, very strong interest in getting back, whatever this rehab was, which I had no idea, I wanted to get to it. Athlete by nature as well, I’ve always been an athlete my whole entire life, so I understand what it is to practice, to train, to you know. And that was my focus coming out of it, get to rehab as fast as possible. 

Well this was probably more down the road, was my fear of basically not breathing, which was popping off the, the ventilator, which happens occasionally, sometimes once a month, sometimes five time a month. But when I was first getting used to it, or trying to acclimate myself to breathing like this, it, you know, that was the biggest thing, because it's like drowning without water. I, you know, it was a strange thing—I never, and I mean I realize that I was in some pretty grave, I was in a grave condition at the time—but for some reason, I never had any fear of dying, or never thought that was even ever going to happen to me, for some reason. I don't know why, I don't know what it is—if it was something internal, if it was—I don't know. I just, you know, it didn't matter to me; I just never thought that I knew life was going to go on, you know, we'd just take one-day-at-a-time. And this is how, this pretty much how I've lived my whole life.

I figured his life was over, truthfully.  I felt, you know, school, and he had a sweetheart, and life was so good for him at that time.  I really was devastated for him, I just, it was awful

My greatest fear was I’m never going to be able to have children.  That was my greatest fear.  And, after this Davis dies, the Davis clan ends.

My main fear was just the fear of the unknown, not knowing what the future held for me, you know what it was going to be like to live with a disability. You know, because I've never met anyone with a disability, so this was a brand-new world to me. So, it was just not knowing.

Not taking care of my mom no more; helping her, because she was working at the time. And, there was grocery shopping, doing the laundry, because my brother, he was always getting in trouble, she wanted to send him away so nothing would happen to him. And, I used to do the laundry, mop the floors, cook our food before she got home, go grocery shopping for her, vacuum, and make sure the house was clean. That's what hurt the most.

After I was injured, my greatest fear was being accepted by the opposite sex. I always looked at it that a female wouldn't look at me the same, because she would have another guy that would be standing there, that could carry her, you know, that could carry her bags, do the things that, you know, a manly man should do. And, I felt that I wasn't in the position any more to do those things. So, my position kind of made me, you know, wary of the actions and the interactions of the opposite sex. So, I kind of took that, you know, as a good thing to push me forward and to try to overcome, that barrier, and to challenge that barrier, and to talk to, you know, the opposite sex.

Am I going to still be as cool as everybody else. Am I still going to be accepted. Am I still going to be Jorge, a normal kid—I wanted to be normal and I didn't feel normal in my skin.

No family support. When I first had the accident, it was four years since I'd seen my parents. I was away from my parents for four years. I knew where they lived, I knew the phone number, I could have easily gone and visited them, but I didn't. My accident happened; the first persons that I would have never thought in the world that would be there were my parents, after a four year absence from them in their life. A lot thoughts came, ran through my mind, like, "What am I going to do?"—"How am I going to live?"—"Who's going to help me?" And, I'm so grateful my parents, after so many years that I didn't see them, I'm grateful to them. I don't know how can I repay it, repay them.

I think the greatest fear was that it was permanent and that I would not ever be able to walk again. The doctors encouraged me that I had a chance that I could walk and that my spinal cord would correct itself. And so, every two hours they came in and said, “can you move?” And I attempted to move my feet, and my legs, and toes and nothing happened. They said “okay, we will be back.” And two hour later they’d come back, “can you move?” “No, I can’t move.” And I tried, and I said, “I think I can move,” and I moved, and they went, “that’s great but that’s your hip, you are moving your leg because you are moving your hip, that’s not where your paralysis is.” And so, it became very evident I wasn’t going to move anything, and at that point the reality hit that this is going to be permanent and so now what am I going to do?

My greatest fear was the future in general. I didn’t see how I could live a life with this kind of injury. I was basically thinking that my life was over in a sense. It was difficult to imagine what kind of life I would lead. The thought of being bedridden my entire life, I didn’t see, I didn’t understand that there would be some sense of recovery.

My greatest fear at first was that she was going to die, and I absolutely refused to let that dominate what happened.  And, once I saw her, I had confidence that she would live.  And, in the beginning, that was all I cared about, that Marie was there.

That she was going to have a life that she felt wasn't going to be worth living, that is what I would say was my greatest fear. I was afraid she would feel that, I was afraid I would feel that. What, we really didn't know any people who were disabled on any kind of intimate level, and how do you make a life for yourself like that. That was our greatest fear.

Well one of the main things I worried about when he told me I wasn't going to be walking again, was going back to school. It was society, I was kind of wondering, like, how was everybody going to start looking at me now.

At first, which has defiantly changed since then, my greatest fear was that all of my friends would abandon me, and that I would never have a family or someone, a husband, or children or anything like that. That I would have to give up any thought of ever having a normal life.

My greatest fear was just that I wasn't going to be myself. I didn't know that—I thought legs meant everything—how am I going to get around?—what am I going to do? I was a licensed cosmetologist at the time—how was I going to contain my career?—what was really going to go on? So, I was just basically really scared that I wasn't going to be the same Michelle before the accident.

I thought, I thought I was going to die at first, so I thought, you know, I had no idea what was going on. I was in a coma for two weeks right after my accident, it was induced, and when I came out I just, l was like crazy—I didn't know where I was, what was going on. It was just devastating, really.

My greatest fear in the earlier days of my rehabilitation was my ability to be a mom, you know, because that was first and foremost for me. You know, I was with my children all the time because I was a stay-at -home mom, and I didn't know whether I would be able to do that again and be able to make a living because my husband was the soul bread winner of our house. So, that was really fearful, you know, and I thought “if I didn't work before my injury, how would I be able to work with a disability?” not knowing what I could actually do. And, you know, “what would my kids lose at in this process?” So, that was very difficult for me.

I thought he would die, yeah, he would die. I just wondered, what was the future going to hold, yeah, I wondered what the future was going to hold, and how our family would walk forward, and, you know, what our next steps would be as a family and how, a friend calls it a "new normal," what our new normal would be.

I don’t remember being that afraid at first, to be honest.  I think it was, again, something that I didn’t understand really how—this was going to affect my life and what was happening.  I don’t remember looking forward and being afraid that I wasn’t going to be able to do things beyond play sports, and walk, and hang out with my friends.

You know, being a teenager. 17-years-old, you know, senior in high school, it's you know—how are people going to look at me? How am I going to readapt and return back to my, you know, previous normal life? You know, I was a gymnast before my injury, so sports were big, and I had a lot of friends and, you know, dated. It was like, how is it all going to be when I get back home—and then it's also, you know, how's this going to affect sexuality, and dating, and family and children? So, that was all, you know, it's just constantly going through my head.

Not being able to go outside, not being able to interface with the world, my world. It had been, I'd been a very, very high-profile business woman I was—I still am a marketing director of a company that, my own company for about 20, 12 years, and then a company that bought me that represents professional athletes. But that's what my biggest fear was—not being able to go out into the world and smile at it and get smiled back at.

I guess of losing this magnificent daughter that we had. She is sunlit, she's the antithesis of a middle child, always had been—and to think that that was over. The fact is that we didn't lose Carrie, or any part of her that is essential. You know, she's still exactly who she was.

At first it was just, especially, like, the first week, I was getting some fevers, you know, easily over 105, a 106, so I didn't know if I was going to make it. You know, that was my first fear that, you know, I didn't know if I was going to live. That was one of the biggest things that kept me up at night, or, you know, went through my mind when I was up. That if I went to go sleep today, was I going to wake up tomorrow or not?

At the time, I was really worried about breathing.  I understood that I was in a bad spot at the time, but really all I wanted to do was just get to the surgery, and get to it as possible.  That was really pretty much it for me.  

Greatest fear was that my identity was changing, and the way I viewed myself changed instantaneously. Any preconceived notion that I had about people with disability, because I couldn’t identify the difference between a spinal cord injury and CP probably at that point in my life. Any preconceived notion that I had about any of that was instantaneously applied to myself. So, my preconceived notions about life with disability, I immediately applied it to myself before I knew anything about it. And so, I almost had to make my way out of this preconceived notion forest so that I could see the light on the other side.

I come from an ethnic, my ethnic background, where we’re the “malitos,” we’re the sick ones.  And, you know, there’s something wrong with me.  And being in a chair, there’s something wrong with me.  The thing that really hurt me was that what about, you know, “Am I going to have a family?”—“Am I going to, like, have a house?”—“Am I going to be able to be the…”  When I was a kid, you know, you look at everybody grow up around you like, somebody got a car, they got a boat, the house, you know, the family—“Am I going to be able to do that?”

That he’d never walk again, you know.  And that we were kind of worried and everything, me and my wife, and then we had to make arrangements to go and see him.  And then when we went to see him, he was in the hospital in the circular bed.  And he had this crown on his head, which was, I mean the pictures we saw, when we saw him at first, was just horrible, it was just frightening to see how he was and everything.  It was just terrible, that’s all I remember.

My greatest fear, honestly, was not being able to have a normal life.  Being a female and being one of eight, I’m in a big family, a large family, and I always wanted children.  And, I think my greatest fear was that I wasn’t going to be able to have children.  I was willing to cope with that because I love my husband—we weren’t husband and wife actually when he first got injured.  And no matter what, I wanted to be with him, and I said, “I have to be okay with this.”  I think that was my nervousness with the injury itself.  But, once I learned that there were so many new things out there, my eyes opened up wide.  Sticking by such an amazing man was everything I wanted it to be at the time. 

My greatest fear was that she would pass away. Sometimes with spinal cord injuries, your body changes and you're not as strong or whatever as you used to be. So I was afraid that she would pass away, that was my greatest fear.

I think at first, my greatest fear was I was afraid of losing the life that we knew. Everything was, that to me, that meant everything was different. And I didn’t know in what ways, and I think the unknown was the scariest part about it. Because I was just given a lot of information at once, but I didn’t know what any of that actually meant. And I only could go based off of the words “he’s paralyzed.” To me, that meant “can’t, that means he can’t do a lot of things.” And I didn’t know what that meant, but I could start listing off in my head in that moment a lot of things that I thought that meant right there.

I think there's always that fear of like, "Oh my God, I'm never going to walk again," but I can't say that was something I was stuck on. You know, immediately I was more scared of how am I going to get out of here.

Not being able to do the stuff that I was able to do before. I mean definitely having worked so hard to get a cheerleading scholarship to the University of Kentucky was definitely my ultimate dream, and I had accomplished that. And then losing that was the hardest part of trying to move forward, I guess, in other things that I had gotten to in my life before I got hurt, and now thinking “I’m not going to be able to do any of that again.”

Not being able to do the things I’ve always done.  I work with my hands a lot—not being able to pick up tools, work with my hands, swim in a pool with my family, drive my pickup truck, go to work.  Those are probably the first things that crossed my mind.

I got to tell you, honestly, that I had none—no fears. And, I can even go as far to tell you that when I was in the hospital, I was comforting the people who came to see me. I was letting them know that it was going to be okay.

I have to say, my personal greatest fear was the fact that he wouldn’t make it through those first few days, because of the fact, if he knew that he wasn’t going to walk, if it was a done deal, if they told him flat out that, “You’re never going to walk again”—I would say that I was afraid he would give up. 

Well, married with three kids, my biggest fear was, “How am I going to be able to take care of the family?”  It was my biggest concern.  And, that scared me, that really did scare me.  I didn’t think I’d be able to work or do anything.  I had a vision of just being bedridden.  

Greatest fear was “what will I be like?” I couldn’t see tomorrow. So, for me it was more—so I was a basketball player before my injury, so I knew that everything about myself was pretty much lost, so I had to find who I was all over again. So, I just think that knowing that everything about me had just changed, I had to just figure it out and that was going to be a difficult uphill battle.