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What was your greatest fear at first?
Common Fears After a Spinal Cord Injury
Q: What was your greatest fear at first?
A spinal cord injury is a life-changing event and the days that follow are filled with uncertainty. For many, confronting the reality that they may lose the ability to walk is emotionally wrenching and difficult to accept for both the patient and family. An uncertain future prompts financial concerns and fears about relationship changes. Some worry about preconceived notions of disability and having to use a wheelchair.
We asked 100 men and women to share their greatest fears after their spinal cord injury. The videos below contain their intensely honest answers.
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.
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.
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.
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?
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.
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.
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.
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.
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.
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.
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.
That he would not live a full life. That he would just stop and be disabled, and that’d be it.
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.
I was not going to be pictured as a whole person any more. I would not have the things that I had in my life before the injury, which are marriage, family, career. I was going to be somebody very different.
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.
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.
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.
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.
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.
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.
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?
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 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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.”
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.
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?”
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.
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.
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.”
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 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.
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.
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?
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 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.
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.
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.
“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?”
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.
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.