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Q&A: What was the hardest part of the first days in the hospital?
Hospitalization After a Spinal Cord Injury
Q: What was the hardest part of the first days in the hospital?
In 2020, the average length of stay in hospital acute care was only 11 days, down from 24 days in 1970. It can be a confusing and chaotic experience for patients and families. Patients are often heavily medicated and report feeling dazed, or not fully understanding the situation. Most are unfamiliar with a spinal cord injury and grasping the possible lifelong implications can be overwhelming.
We asked 100 men and women to share the hardest part of the first days in the hospital following a spinal cord injury. Below are the most insightful answers.
I think for me the first days in the hospital were more physically challenging than anything else. I just remember being exhausted and really overwhelmed. And, I remember falling asleep and waking up and not remembering where I was or who was around. I think it was too early on for me to be challenged mentally by the idea of what all of this was going to mean. I was just more trying to get through what was going on then and maybe looking to the very near future. Was I going to be able to play soccer that fall or run? I wasn’t really looking beyond that, or trying to get any further than just making sure I knew where I was, and what was going on, and what I was supposed to be doing.
The hardest part for me was to see my parents so upset, and I wanted to buffer them a little bit from the pain. Along with that, the other hardest part was just to see my brother and to see the fear that he was experiencing and not understanding. He was in the intensive care, intubated, and not being able to speak and not knowing what he knew or didn't know about the accident.
I was very heavily drugged for probably a full week, and I did not know where I was, I didn't know what had happened, I was very scared about that. So it was as literal as not knowing what was happening, what happened, where I was for the first week.
You know, dealing with abandoning all of my, I guess, shame and getting used to having a, what are they, PCTs come do everything, and just being comfortable and making sure all of my functions are functioning, and just dealing with the actual injury. You know, the medical part of it, I think, was hard at first, and then also balancing that with, like, lots of visitors and not quite understanding what to tell people. Like, I was with friends from school and I was like, "well, I'll see you next semester," you know, so I didn't really understand.
You know I think, I had pain, an intense shooting sharp pain that nobody was able to really figure out why. I think the other thing was—my family lived in Charlotte, North Carolina. I was injured at college in Greenville, North Carolina so there was that, family having to get there. And so, that distance, meaning knowing that people I knew weren’t around except for my family.
I was in a coma for the first day so I don’t remember a whole lot about it. I had a lot of weird dreams, I guess. I almost felt tied down, I guess it was because of the paralysis. I couldn’t move. So, just the feeling of not being able to move, and I guess being tied down was probably the hardest for me. And then when I got to Shepherd’s Center, it was not being able to speak and really say what I wanted to say.
The hardest part for me was the first day my parents left me here at the hospital. And I was by myself because for nine days they’d been with me through intensive care, and surgery and all that. And then, the first night that I was by myself—my parents didn’t spend the night, they went home—and I was 17, and I was in a big hospital all by myself. And I’ll just never forget, I had headphones on back then and I just drowned myself in praise and worship music. I mean, I just, it was what got me through. And after that first night, I was like, “okay, I can do this,” and I just realized that I’m going to have to do this without my parents every day. And although they were fantastic help back then and they still are, they’re awesome, I realized after that moment that I had to—it was me, I had to make this work, so I did.
Just tragic, sudden change; didn't want to live. (Interviewer: You didn't want to live?) I didn't, it was just a drastic change. I mean, one day to another, I'm in a wheelchair; I didn't want to live like this. I mean, after surgery I couldn't, I didn't have any movement at all. But, after a while in rehab, I, like, started moving my arms, trying to be, like, independent.
The first weeks in the hospital just seemed like an absolute dream. I wasn't really aware of the extent of my injuries, so the hardest thing really was really just not knowing what was really going on. I knew that I could not move, I knew that I couldn't breathe, so I was just really confused, and that was the hardest part, being confused.
For me my first couple of weeks, I was not really coherent in communication. So, waking up in the hospital and realizing that I was in the hospital, tubes and wires everywhere. For me it was really kind of trying to grasp what was going on. And also, you know, so—find out that I have a spinal cord injury, I have a permanent disability, you know, never going to walk again, I was really trying to come to the grasp of what am I going to do next, what's going to happen here, because I'm 17, still in high school. It was hard to really grasp and the concept of spinal cord injury, especially hearing "you broke your neck," you're relating to stereotypes of what a broken neck means, you know from the neck down—not knowing if you're going to be on a feeding tube for the rest of my life, have a trach in my neck for the rest of my life. It was really kind of coming to grasp with what that all means.
I was 14, so I was angry. I was very, I was totally alone at that point; my sister was in college, I think my brother had moved back home. But my dad went to Colorado; he left, so we were there kind of alone; we didn't know what was going on. And I was a freshman in high school—I was going to Duran Duran on Friday night, and this was going to ruin it. It was very selfish, angry time— I didn't understand. And so my way of dealing with it was to go out with friends, and not, and kind of not address it. I don't think I understood how, I don't think I understood how severe it was, and how, how dire her, the situation was at the time, I think I was so far removed. And I remember being at home, and everyone, there were a ton, we kept getting package, after package, after package, and all this food in our house all the time. And it was kind of like, "why, why is she getting all the attention?" Like, I understood it on one level, but it was also very frustrating, I sort of felt like I have all these questions, and I'm a teenager, and I don't understand, I don' understand why it's not about me. It was hard.
I think the hardest part for me was trying to think out how my business was going to continue to run, and how we were going to get through the Christmas season. I owned a retail jewelry store. I had a lot of people depending on me to make their family and wives’ wishes come true. And, I got shot on December 5th, so I think my family was surprised that that was my first concern, but I really cared about my customers.
Just kind of figuring out what was going on, and adjusting to the lack of control, I would say. Because, you go from doing everything on your own, just to relying on nurses and the doctors, like, technicians or the nurse-practitioner people to help with everything, with even turning, or getting a blanket if you're cold, you know, just the little things, you know. It just was really hard just adjusting to that, and having to rely on the call button for everything.
I think the first night, a doctor came in and said, “What you see is what you’ve got.”—He says, “He’ll never get any better.” And that is…bad. Just, you feel like you’re life’s gone, it was terrible. It’s been 25 years, and I still break up. I think that was the hardest part, you know, that first shock of knowing that he’s not going to walk again. And, I met a woman at the hospital, and her daughter had been hurt a couple years earlier, and I asked her how she was handling it, and she said the trick is that, “There’s no laughter for the first two years.” I thought that was hard. But thank God, and with God, we’ve worked to it, and there’s laughter again.
I think the hardest part of being hospitalized was the fear of the unknown because I have never had a spinal cord injury, I have never known anybody with a disability personally. So, I think it was like, it’s the unknown for me. That was probably the scariest part because I didn’t know where I would be, you know, at the end of rehab.
The hardest part was hearing that Nova was going to be paralyzed. My worst fear was that she wasn't going to survive. After, after hearing the doctors say, "She made it," there was a false sense of security, it was a false sense of security. And then later on that morning, because I found out about 1 o'clock in the morning that Nova had survived, it was later that morning that I found out she was paralyzed. And it, I knew our lives were going to change, and it was something I was, I was trying to grasp as strongly as I could. And I wanted to control that, I wanted to be able to know that I could handle what was going on with this. I'm not a real religious person but I said a prayer to whoever and said, "Look, just give me the strength to get through this right now, let me see my wife and then just let me handle it on a day-to-day basis."
The hardest part of the first weeks in the hospital is trying to come to grips with what a spinal-cord injury was. I mean what did it actually mean—you've got a spinal-cord injury and you just, you don't know what, what it means at all.
Well the hardest part, probably not knowing what the future was. “Was this a permanent situation?”—“Am I going to get better?” –And, “How soon can I go back to work?” That kind of thing.
I think the uncertainty, the not knowing, I think these are the hardest things. Because I think when something is predictable and understood, then you know how to work with it. But this was something that I had never really been exposed to before, and it certainly wasn’t something I had ever experienced, and nothing that I had ever weighed in on as a potential component for my future. You know, as you grow up you think “oh, I’ll probably get married, or maybe have some kids, or three dogs, or maybe I’ll just collect cats.” But you never think “I’ll probably have a wheelchair, build a ramp and all of these things.” So, you’re suddenly thrust, literally in the blink of an eye, into a new way of existing, and you don’t even know the beginning of what that is. I think that’s the hardest part for me.
He had blue coded twice, and just, it came so fast, and I really thought I was going to lose him. And at one point he even said to me, I'm going try not to cry, "Mom, just let me go." And I said, "No, I can't," I said, "it's not for me to decide, you're here for a reason, and you're going to survive for a reason, and we have to find out what that reason is."
I think it was—well, obviously, the shock—but I think a lot of the unknowning, maybe of...I'd never known anyone, you know, close, like, that had that sort of condition. You wonder what life is going to be like, or how it's possible. That sort of thing.
The hardest part for us was when, right after his injury, he suffered a massive stroke. We kind of knew he was paralyzed but then we weren’t sure if he was brain dead. That was the hardest part, wondering what was going to be left of this child.
It was the physical, all the physical things that were happening to me. They, you know, the touching of my body in different ways that I’ve never been touched before. Someone, you know, giving, catheterizing me. The, you know, my body was just in so much pain, but it’s just all the physical aspects, the things that were happening at the time. It was almost in a sense that I was being, I felt like I was being violated in a way. Because there was so much happening at one time, and I didn’t know what to expect, I guess in a sense. And so, there was doctors and nurses, and everybody’s feeding you information trying to explain to you what’s going on. It’s just, it was very overwhelming to me, and I didn’t know what to think. And so, I was very scared, very scared at that point.
The hardest part I think was that, as a physician, I knew what her injury meant, and she didn't really get it—yet. And the hardest part was knowing that it was really our job, to convey to her at least a little bit of what had happened. And she thought it was—she was going to have an operation, and they could fix it. And the hardest part was conveying that information to her that no, they can't fix it and then watching her reaction. You know, you're 15-years-old, you're a kid, you're a teenager and you're used to doing whatever you want with your body. It was difficult.
I was as confused as I could be from the beginning. But, I had a friend who was a nurse, which was still confusing till I got to the hospital. And that staff out there at Loyola was talking to me, explaining things. And, I don't know, I just realized it was going, I realized the problems ahead, but that he was going to be ok. So, that's all I wanted, for him to be ok.
I'd say the hardest part was not knowing my injury. I mean, first of all, I had no idea what being paralyzed was, I mean I'd heard about it, but I didn't really understand it. And due to me not knowing, understanding my injury, I was completely dependent on other people, especially, like, the nurses, and, you know, the doctors for everything, which is their job, you know, it's their job. But due to me being completely dependent on them, I didn't know if they were doing anything wrong. And, like, for instance, I ended up with a pressure sore, because the nurses did not turn me properly for the seven days I was in the hospital I was in.
The pain, the pain. The injury was so substantial that it took me, I want to say really, probably about three or four days, maybe even a full week to fully come back. And that’s when the doctors came in, and just gave me the information of actually what happened. All of my injuries, including the spinal cord injury as well, but I had a lot of other injuries to recover from.
The hardest part was accepting the fact that it was possible she wouldn't walk again. She had a lovely little sexy walk, and just the thought of not seeing her sashay across and do that again, that was hard. Accepting the fact that she would feel okay about herself, if she would want to live not being able to walk, that was hard.
The hardest part, I would say is, was, basically, just thinking about tomorrow. At first, if I was going to be able to open my eyes? You know, if one of those nights would've been the last one for me? And then after that it was, what's going to be my results?—What am I actually going to move? What am I actually not going to move?
I was scared to death. I mean, when you’re told you’re not going to walk again, when your husband tells you you’re probably not going to walk again because they let him tell me that, that was very scary.
I had to make a decision for Michele, because she was not able to at that time, to go ahead and do the operation, or not. And, they were telling me if they don't start the operation within the next hour or so, that, you know, her life could be in danger. So, not really knowing what was going on, what kind of operation that was involved, I had to make a quick decision to say yes, to go ahead to save her life.
The people. Dealing with the nurses, the caregivers, etc., a lot of them had attitudes. Just, they thought that I was little bit aggressive, a little bit bossy, and basically, I kind of felt like they were kind of half doing a few things, so I would ask them if they could do it right.
Looking at my family cry while I wasn't. Telling them to be strong, when I was already strong, because I was telling that: "How I am going to get better if I'm looking at you all cry," and they were amazed at that for some reason.
I think for me, the hardest part about the early days was really grasping what happened. It was a lot to take in, it happened so quickly that to really understand what was happening at the time was—I felt like I didn’t have the capacity to. It was just really overwhelming, a lot to take in and just really scary, especially because I was by myself in the first hours. So, it was just really overwhelming and hard to take in.
Your first thoughts are you want that person to live. You’re not sure what’s happening, you don’t have a lot of contact with them. They’re in and out, and they’re certainly not feeling very well and they’re medicated. So, you’re very upset. You’re in pain too, because I was in the car as well. Most people don’t realize that when someone is injured, it’s the whole family that goes with them.
Well, the first day, and it’s a hard question to answer because the first days I was in what I call a “brain fog.” And I had a little bit of a brain injury on top of my spinal cord injury. So, I don’t really remember much of the first month or so. But the first days that I really start to remember stuff, when they explained to me maybe a month in, and all of a sudden it started sticking. And because of my medical background I knew enough about spinal cord injuries to know that if I’m laying flat in bed paralyzed a month out, then I’m in a world of hurt, you know, and that this is way bigger than I anticipated. Two months out, I was still telling my medical partners that “I’ll be ready to join you guys again in six months,” you know, and they’re looking at me going, “yeah right.” And they were right but it still hadn’t sunk in yet to me that my life underwent a significant change, it took a while.
The hardest part of the first days in hospital was getting used the fact that I was going to paralyzed for the rest of my life. Because I got shot one day, and the next day the doctor came in and told me, “You’re probably going to be paralyzed or the rest of your life. I’m sorry.” And, he was gone. Alright, I lost it. I lost it.
I was so sexually active that, man that's all I was thinking about. Like, the sex aspect of it, like, what am I going to do now?
Well the very first day, it was when he was in the hospital and they had him in a ROTO bed, and he was all stationary, all the equipment he had on him. And when I saw his face, I could see the fear and I think that stayed with me. I felt for him and I just wished I could do something to help him. It was that uncertainty
The overwhelming sense of—my life is never going to be the same. You know, the acceptance that everything is different. That the way that your family looks at you, the way that your friends look at you, everything is different, and the hardest thing to imagine is that you're ever going to be able to put your life back together again. Initially it's almost unfathomable that you're ever going to have a life. You know, eventually it gets there, but it takes, I think, a very long time, and that at first is a very overwhelming feeling. Because it happens, it's not like you're born with it, it's not like it's a degenerative condition. It's one minute you can walk, the next minute you can't.
The hardest thing for me is getting over the fact that I didn’t have the use of my fingers. I think that by far shook me the most. Like, I knew that I was paralyzed, but the moment that I tried to pick up a pen, and it fell out of my hand, I was like, “oh my God, life is about to be difficult.” So, definitely the finger function.
I think adjusting to the fact that I couldn’t walk, and that I had to think of things differently than I had before. And so, it made it process information differently. Family, friends that came to visit, we had to approach them differently. It was almost like there had been a death and I’m like “I haven’t died, I’m still here .” And I’m a pretty up kind of a person so it was like “yeah, I maybe in a wheelchair now, I may not be able to walk ever again, but I’m going to live, and so, what am I going to do to make this work?”
The hardest part was reliving when he told me that, I'd never walk again, that it'd be physically impossible to walk again. And I was devastated and began to hate who I was.
I think worrying about family, worrying about my future and worrying about the burden I would be on my family. Those were the different things I was trying to get a handle on and trying to get a grip around—wondering what kind of life I would have after something like this. How would I be productive?
The hardest part was just being disoriented, not knowing where I was. They had me on a tilt table where the table was just turning back and forth, keeping you from getting a pressure sore. But at that time, I didn't realize that, so was tilt back and forth, I'm waking up, coming up out of the medication, you know, the sedation. And I'm not knowing where I'm at, what's going on. So at first I was like an, initial shock to me; I didn't understand what was going on. So that was the hardest part to me.
I think not really understanding the severity of the injury, and what it really entailed and that it wouldn’t get better. You know, me really not grasping the fact that it may or may not get better, and really wanting an answer.
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.
The hardest part was not being able to do things independently. I was 15 years old and just starting to get a taste of independence—I’ve always been an independent person and child. So, to go from being able to do everything yourself to needing help with everything, even eating, was definitely difficult. The good news is that it didn’t take long before the OTs and PTs came in who shared my vision of wanting to be more independent.
The hardest part during that period was the first day in physical therapy. It was about three or four days after surgery, where they fused my spine, and I had to lift my legs. And, I didn't realize how heavy it would feel and how weak I would feel. I mean obviously my body had gone through a traumatic injury and it makes a lot of sense looking back at it, but that was a real sort of solid moment of "I've got a lot of work in front of me."
The hardest part was just not knowing, because nobody would talk to me. You know, I just remember the doctors passing by, and just saying my diagnosis. They're like, "T11, ASIA A, complete," but nobody would explain that to me, so I didn't know what was going on. And when I was finally told, you know, the doctor was just very blunt. I asked him, "Hey doctor, I can't feel my legs, you know, when's the feeling going to come back? When am I going to walk out of this hospital?" And he was very nonchalant, like, "Well, you're never going to walk again." You know, instantly my world just shattered.
Sitting in a hospital bed in traction on a ventilator unable to talk, and realizing as the days ticked off that it wouldn’t get any better as fast as I thought it should. And then, the realization that it wasn’t going to get as good as I wanted as fast as I wanted it and maybe never as good as I wanted. I think the first talks of “you’re going to rehabilitation,” which came 2 to 3 months in, my thought was “rehabilitation, how are they going to fix me?” And then you had to process the “yeah, they’re not going to fix me; they’re going to teach me to work with what I have.”
Coming to grips with the idea that my son wasn’t going to do the things normal teenagers did any more. He wasn’t going to be able to ride his bike, and walk to the store, and hang out with his friends casually. The impact that his life had is what I remember the most. Not so much what it meant for me, but what did it mean for him?
Well, for me it was, like, accepting that I was going to be in a wheelchair for life. I couldn't accept it for a while. They put the wheelchair next to my bed, I would not even look at it, I didn't even want to get on it, they had to force me, put me in the chair. It took two nurses to get me up and put me in the chair, I couldn't accept not walking again.
The hardest part of the first days in the hospital for me were actually worrying how he was going to handle that, in all honesty. When I look back at that, he, I was so afraid that when the doctors told him—if they told him before he went into surgery that he’d never walk again—that he wouldn’t have made it through that surgery. Okay, that was probably the absolute worst feeling. And, I probably would have to say actually sleeping at all, but, in all honesty, just because it felt like I just couldn’t. Every time I laid down, I couldn’t stop thinking about him, the kids, worrying about where they were going to be, what was going to happen. But, I can’t even say that because at that time it was focusing on him.
Probably coming to grips with the idea that I was somehow going to be this member of this group of quadriplegics, which I’d only heard about, and never, you know, could imagine what it would be. Just me saying, “There’s no way in the world I’m going to be one of those.” You know, so, kind of coming to grips with just a big life-changing experience, I think.
The most difficult part, I think, was understanding what was going on. In 1974, the health care industry wasn't real open with this type of condition. They, I think, were worried about saying things like, "you'll never walk again," that sort of thing, and so, the information flow from health care professionals to me and my family was not very good.
Oh, by far, the hardest part of the first day in the hospital—they had me in traction to try to get my spine back into line. So, I was kind of this, and my spinal cord was pinched, and I had broken my vertebrae, so when I did, the impact just made it go like that. So, in order to get my vertebrae back lined up, they had like this bow, it actually like clamped on my head, and I was laying flat and it pulled with a rope. It was very medieval-looking, and it pulled with a rope while I was laying down to slowly pull, like stretch me out and I was not allowed to move. And I was getting, of course now only my arms work, but I was getting so anxious that I was wanting to move, and I was pulling on it. And I had like a rolled-up washcloth on the back of my head as kind of like a makeshift pillow, and that’s all they would give me and there was two problems. That was like was driving me nuts on the back of my head because it was a lot of weight concentrated on the same spot. So, it was like I actually do have a pressure sore on the back of my head from when that happened. And the other thing was is they were going to put me in an emergency surgery, and I think, I can’t remember if it happened on a Saturday or a Sunday but whatever. They were waiting to get me back into line, and everything and they were going to do emergency surgery like the following morning. I couldn’t eat or drink anything, I wasn’t too worried about eating but I was really, really thirsty. So, they wouldn’t let me drink anything. I was like, “what about ice chips?” and they were like, nope, the only thing you can have is a sponge, like put it in your mouth.” And they’ll kind of wet your mouth, and it was like “that’s it?” So that was not fun. And then they decided, we decided the weekend team of orthopedics, although they’re good, they’re not as good at the A team that comes during the week, so then I had to wait till like Monday or Tuesday. And if I recall right, I think they had me in the traction for that remainder, I don’t know remember exactly but it was very uncomfortable, not good. So, that was by far the worst thing that I remember about it.
When I first came to, and I was not making a lot of sense with people— I had that tube down my throat, I couldn’t really talk—it was trying to communicate with people, first of all that I was still there, and still had a brain, I guess, and could make sense, and knew people. So, that was the first thing to get through.
It was a shock; it was just such a shock. One minute you're running down the beach, and playing around as 26-year-olds like to do, and the next thing you know, you're face down in the water. You can't move a muscle, and you're worrying about dying, and then you wind up in the hospital, and people are hovering over you, you know something is terribly, and tragically wrong. And, phone calls are made to parents—I was out of town at the time—and you just don't know what the future is going to hold at that point.
Really not knowing what was going on. I didn’t know you could break your back, I knew you could break your neck. But, when, I thought at age 14 if you broke your neck you died, that that was an instant death. So, I didn’t know, and I didn’t have enough knowledge at the time to know any different. So, it was just one of those, “okay, what’s next?”