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Q&A: How did you develop an understanding of the injury?
Spinal Cord Injury Prognosis
Q: How did you develop an understanding of the injury?
Since 2015, the average age at injury is 43, up from 29 in the 1970s, almost half result in incomplete tetraplegia with less than 1% experiencing complete neurological recovery by the time of hospital discharge. This is often a hard reality for patients and families to face, and the delivery of the news can often be traumatic.
In the interviews below, many were immediately informed that they would never walk again, while others were given hope of recovery and became determined to restore their mobility in rehabilitation.
We asked 100 men and women how they learned the meaning of their spinal cord injuries. The videos below have the most candid and insightful answers.
I did have a little bit of a medical— I’m a nurse as well and I have a medical background. I did have a comprehension of what was going on to a certain extent, although denial is a great thing. I knew in the back of my head what I was dealing with, but there was always that hopeful piece—“Maybe the injury isn’t quite as permanent as they’re saying.” You know, and that just kind of came gradually. It was just a gradual process of, you know I was being practical, and planning, and trudging forward, and doing my therapy, but not completely losing hope that I would regain some movement.
I mean it was pretty obvious; I really tried as hard as I possibly could, and I could not move my legs. And then it was obvious kind of by what my family members, the way they were reacting. Because I was with my family, and the way they were acting, it was kind of like we could all, you know, it did take rocket science to figure out what had happened. But we didn’t know exactly what had happened, but it was like, “well, I’m obviously paralyzed, I can’t move my legs.” And at that point, we didn’t realize that my hands didn’t work quite right or anything.
I felt I needed to be there at the early morning rounds, at 5:00 or 6:00am, when the neurosurgeons were going around. And I would be there, so I could hear what they were saying. Because they weren’t talking to me, they were talking to the students and fellows.
I don't remember there ever being a time where it like sunk in “you’re a paraplegic now.” It was just this is what it is. My family is—I have very good parents and my family is very like, “here's the problem, here's how we are going to fix it, here's what we do, and you keep on keeping on.”
I do remember the moment that someone came in, the surgeon came in, and told me, said the words, “your husband is paralyzed,” and it was too much to grasp in the moment. I mean I just completely lost it, and crumbled in that moment because, I mean, those aren’t words you ever expect to hear ever. So, I think it just kind of gradually developed over time as the doctors explained to me exactly what happened, and exactly what that meant and exactly what that could mean. It just took time though; it wasn’t something that I would say…
I realized that my medical neurology training was 30 years old at that point in my life because I went through neurology as a medical student, and didn’t deal with it at all after that. So, I made my girlfriend go down to the library here at Shepherd, and pull out some neurology texts to see if I could find enough up-to-date one so I could read about it. And finally things were starting to sink in, and I sort of rereading medical texts about spinal cord injuries and that’s when it sunk in like, “oh, I’m screwed.”
When my accident first happened, I knew immediately that I was paralyzed, like I felt my legs go numb, and get very heavy. And I even told one of my friends who—no one else was hurt in my accident—but he was standing over me, and I even told him, I said, “I’m paralyzed.” I didn’t even know what that word meant, you know, but I felt a heaviness, it was almost like my legs were wrapped in concrete, that kind of heavy. And I didn’t know this, but in the ambulance ride, they were doing the cotton swab and pricking your foot to see if you had any feeling. I didn’t know that they were doing that. But the first time I realized that it was real was, I was getting an MRI. They were doing some x-ray of me, and I was freezing, and I remember being so cold. And I went to put my hands under my legs, you know when you put your hands under to keep them warm, and they had taken my pants off. The nurses had taken my pants off and I didn’t realize it. I had corduroy pants on, I didn’t feel my pants, I felt my skin and it was at that moment I went, “oh, this is really real.” And when they came in, like my parents, and my youth pastor was there, and the doctor was there, and they came in to tell me. You know, I almost told them, I almost said “I know what this is, you don’t have to tell me.” So, I knew from the very beginning that I was paralyzed.
Right after I awoke from surgery-and my mother was by my side-the doctors came in and they just bluntly told me that I was paralyzed and that I'd never walk again.
I probably had a lot of trouble. I didn’t really understand what was going on in rehab because they kept on teaching wheelchair skills, and so I was like “I need to learn walking skills” and I wasn’t getting those. I was doing certain things but the majority of the day was getting into a wheelchair. So, I really was in denial a long time. But it probably took, I probably was an outpatient before I really started to accept it because I was like, “wait, I’m going home but I am going to keep going to outpatient, I am still going to learn to walk.” They were just trying to get back to a somewhat normal life. So, it really took a good amount of time to figure out that this wasn’t going to happen.
I got on all the websites and everything. I wanted to know the possibilities; I did all the research at the time for an interior contusion and the possible outcomes, there was not a lot on it. I wanted to know, but at the same I didn't want to know. I wanted to accept, but I didn't want to accept. And, I'm an RN and had been for 10 years prior to this. I knew what a lot of it meant, but I'm a mom, I don't want to know. And, I didn't want things pushed on me, and a lot of my co-workers and doctors would push certain things I wasn't ready to accept—my son wasn't, neither was my family.
Oh, I knew right away that I had a spinal cord injury. I could feel it; it was like an electric bolt that went through my body. So, when I woke up—I was in a coma for about three-and-a-half weeks—when I woke up I knew it. I didn’t know what my other injuries were but I knew that I had the spinal cord injury. The doctors were very vague at the first hospital I was at. Of course they told my parents that you know, “she’ll never walk again.” “She’ll never have control of her bodily functions.” You know, painted a very grim picture. It wasn’t until I got to Shepherd Center that I had more information and a better understanding of the injury. And as it turned out, some of those things that they initially told my parents weren’t true.
I got to rehab; I had a great O.T., a great P.T., physical therapist and occupational therapist, who explained to me what I was facing. I mean, what did I have to use. I had to compensate; I had to use my mind for the things I lost physically.
I had some really good doctors and clinicians that even though I was only a 19 years old, they talked to me as well as my family. I’m sure there—well, I know there’re things they said to my family that they didn’t say around me back then. I mean I’ve learned that since, but I just had some good folks that were able to talk to me about what had happened, what my prognosis was. In fact, I remember I was stabilized and ultimately transferred from Greenville, North Carolina to Charlotte, North Carolina for rehab. Wasn’t in an airplane by the way, it was in a back of an ambulance for a long ride. But that physician who put my—I didn’t have surgery, but they put like four posters, you know, stabilize my neck. He grabbed my hand and said “if you can do more of that, that will take you a long way.” And so, I knew right then kind of like, you know, to work on the wrist.
We had discussions with the doctors. We had a family meeting and discussed treatment. You know, what had actually happened to my spinal cord. Saw a picture, a X- ray and I was like, “oh, how magnified is it?” “Oh, it’s not magnified.” And the screw was like—I have screws in my back and they’re like really big. It was really, it’s kind of disbelief at first. I mean, it takes a while to get okay with that.
I knew right after I got shot that something was wrong with my body because I tried to stand up and I couldn’t. And, once I woke up from surgery that night, I think I kind of understood things. My doctors didn’t really have to explain things in a very complicated way. I was probably one of the unusual ones. I more focused on, “Okay, this happened, tell me what I got to do get out of here and live life.”
The doctors, they gave me a lot of information. Family members, they came in and they were very active in my recovery as well. And then once I fully came back, and was aware and conscious, then it was everything else would move except for my trunk and my legs. So, it was there, and it was there to deal with.
I think that in the beginning you really don’t grasp what has happened, because you are faced with this event, and things are so different, and they really don’t talk about it a lot. They address the injury, but they really don’t say to you that “X, Y, Z is going to happen.” So, you have to live and learn each day, and you listen to the doctors. You’re at the hospital during certain times, but then doctors there, and I think because of his age, he is an adult, they talk to him. So, you really don’t know. You know that your life is going to be different, you know that there’s a lot of uncertainty, but you just can’t put your finger on it I think.
When the doctor came in and told me that I was paralyzed, it took a while for that to sink in. I really don’t think I got it for a couple hours—that I’m paralyzed. And then he went on to say that they’re doing a lot of research, doing a lot of things to help people. I guess the first time when I’m trying to wiggle my toes, and I couldn’t do anything, that really hit home then again I guess as well.
Time, it took time. You know, I didn’t want to hear what they were telling me. The likelihood of walking again was pretty slim, the chances, I didn’t want to hear that. Even after I got out of the hospital into rehab I said, “No, I’m going to walk out the door someday, you’ll see.” It took a long time for that to settle in, to sink in.
I want to say it started immediately. I mean, from the time he was in the emergency room at the first hospital, and realizing that they’re putting a catheter in him, and he’s not feeling anything, you know, I expected him to flinch. That’s probably the start of it for me as far as knowing what was coming, and how to handle it. But, it’s just over all talking to the doctors, talking to the therapists, probably not until we got into Marianjoy, did I have a full understanding of what he was going to be dealing with. You know, obviously when he was in the hospital, he was in ICU for pretty much the entire month that he was in the hospital, and you don’t grasp it totally. So until you get into, you know, a rehab, that’s probably when I first started understanding what we were dealing with.
It took me a really long time, much more, much longer than my siblings. I had. I had refused to go to the hospital and see her for a long time. I used it as, as an excuse to have huge parties at our house all the time. I figured out a way to totally cheat the system because I lived basically, as a teenager, alone in our house for five months. And so while my dad was at the hospital with her, I was having parties and then claiming that, you know, the new housekeeper that we had, because she wasn't there, cleaned something up wrong. You know, and that's why all the liquor was out of place, or that's why you know, I used it as that. And one day my brother finally picked me up, and put me in the car and made me go. He literally physically forced me to go and, and see what was happening with her. And I think that was kind of the beginning of me starting to understand that our lives were now going to be different.
That's really where I got my grasp of what the spinal cord injury was in rehab—and it was pretty quick and pretty in your face. At that point, you're just bombarded with information and education on all of the things, the medical side, but also the potential side of, of you know, this is what you will be able to do, this is what you can do, these are the possibilities. It was really brought to the fact that my potential was really based on my drive.
Clinically, I knew what it was, and physically, I knew what it meant. Emotionally, I'm still learning what it means.
In the rehab. So, we went and had the surgery, when I got to the rehab center, the doctor and everyone had explained it to me, but I didn’t understand. We hadn’t had biology or any of the sciences yet because I was going into the 9th grade. And at the rehab center, the doctor took x-rays, and she looked at them, and came back upstairs and said, “we’re going to take some more x-rays.” And, I’m like, “well, we just did.” She goes,” no, we need some more.” So, she took more, and when they were developed, she stayed with them, that’s when she came back upstairs and explained to me exactly what was going on. A side note to that, the first operation I had was on C4 and 5 even though the injury was T4 and 5. So, then the question becomes “what’s next?” “Do we do a surgery?” “Do we put him in a halo?” “What goes on?” And, it was at that point I found out the different cervical and thoracic functionality, what could happen or not. And we decided let’s fly to Texas, have another surgery on thoracic to be able to give me every opportunity to recover.
Understanding my injury took a long time. Even though I am educated, I think when we hear the word “rehabilitation,” I think we have the notion that it is to rehabilitate yourself so that one can ambulate. But, I think over time, I understood that rehabilitation and being able to become more independent with what I had. And, I think that was very traumatic for me because that wasn’t what I thought, you know, the definition has changed. And that came with a lot of baggage too, you know, when I am learning how to do something different, you know, it’s good and bad at the same time because in one sense, it’s like, “oh, you learned how to do your bowel program! Uh, I finally figured it out and someone doesn’t have to help me out!” But, at the same time, there’s that notion, “Oh, does this mean this is the way I have to do it?”
Um, slowly. I didn’t ask that many questions at the beginning. I didn’t know what a spinal cord injury was. And they told me I was paralyzed, and I said, “Am I going to be able to walk again?” And, I remember my mom said, “Honey, I’m not sure, I don’t know.” After that, I didn’t really ask a lot of questions. From the get-go, I didn’t really understand what it meant to have a spinal cord injury, and all the things that it was going to affect. And I think that actually made it easier at the beginning, because I wasn’t looking really far ahead in terms of, “How am I going to college?” and “How am I going to have a family?” and “How am I going to do all these really difficult things from a wheelchair?” I just kind of, in my head was like, “Oh, I’ll be better by next summer. If not next summer, maybe the year after. I certainly would be better by the end of high school.” So, it took me a long time to really internalize all the things my spinal cord injury was going to affect. So, I think I came to understanding really slowly. I think it was a good thing. I think part of the reason it was really difficult for my mom, my dad and brothers is because they understood what this was going to mean, and all the things it was going to affect. Whereas, I really wasn’t looking that far forward, and I think that helped me deal with what was going on in the immediate future and present a lot better, because I wasn’t as overwhelmed by what I was going to have to face later down the road.
In the beginning, you are just listening to words, and it’s not till later that it starts to sink in, and you start to process. You’re kind of on overload. You had your family all around you in the emergency room. You’re following your child from emergency room up to ICU. Someone had told me to get a notebook, and start writing things down, keeping a diary. And that is very, very important because you are talking to many different doctors, nurses—every time you come in, there’s somebody different. And, I did, I wrote that down, and that kind of helped sort things out in your mind, and know what kind of questions to ask next time you visited.
The technicalities of it just from a simple explanation. I think that the biggest thing that resonated with me the most was if you consider the spinal cord to be a banana, and somebody just poking a piece of that banana, and that dent then is basically the injury, and that has created that short circuit in the system. So, that kind of is to me, it sort of explained it enough to where, okay, it’s the information is just not able to get from one side to the other.
It was kind of a process, because when Jim was first injured he was at one hospital, and they were telling me he had a brain injury. And we went through this whole big thing about, that he should be taken off life support. So that was the initial challenge that I faced. But I knew right away that he was vent-dependent, he was a quadriplegic, and it was just whether or not if he had a brain injury. I mean, they were pushing me to take him off life support. I was able to look in Jim's eyes, and I connected with him, and I just knew that he was ok. It's, I don't know unless you're there that you know if somebody's comprehending you or not, and I just knew that we were connected. So, I knew he was all right.
It’s always disconcerting when you have all the doctors come in and look at you and shake their head and just kind of wander back out. You are like, “this isn’t encouraging at all.” But I knew I couldn’t move, I knew that my legs were just lying there, and I was feeling horrible. And so, they were able to do emergency surgery on my heart, correct what was happening, but because of that, I ended up with a spinal cord stroke, and my legs never came back so they stayed paralyzed for the remainder of the time. So, it was very difficult for the doctors when they came in and said, “you’re not going to walk again.” And they warned my wife in the hospital, in the emergency room that I probably wouldn’t walk. I wasn’t too worried about that, I just wanted to live because I thought I was going to die. So, to the fact that I was paralyzed was fine with me because I was alive and still moving around a little bit.
The spinal cord injury, dealing with that at first, did I ever really, walking was never in the back of my mind. I think getting through, you know, there were people thinking her toes were moving and clinging to that hope. I think the shock of it, I never, I just wanted her to live see what was going to happen. I never gave up hope, but I just wasn’t sure and so focused on her immediate needs. I never thought about walking again at first. The second day we were here, Dr. Bowman met with my sister and I. He explained her level of injuries, and it made it really real then that her spinal cord was severed, and she wouldn’t walk. So, that was kind of, I just vividly remember that meeting of sitting at the table. It was just the three of us, talking about our injuries.