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Q&A: What was the hardest part of rehabilitation?
Rehabilitation Obstacles After a Spinal Cord Injury
Q: What was the hardest part of rehabilitation?
Rehabilitation is a rigorous process. After physical and psychological evaluations, each spinal cord injury patient is given a personalized treatment plan. The treatment plans are designed to continuously challenge the patients moving ever closer to independence.
Newly injured patients often start rehabilitation programs feeling desperate to get back to normal. It is difficult for many to accept that they will have to find a “new normal” — developing new ways to accomplish even the simplest tasks of daily life, such as bathing, dressing, eating and managing bowel and bladder programs. The process is full of frustrations and small victories.
We asked 100 men and women living with spinal cord injuries to recall the hardest part of their rehabilitation. Watch their best answers in the videos below.
Well, we learned to communicate a couple different ways. When he was first injured, we would start saying letters of the alphabet, he would blink. If we couldn't figure out what he was talking about, then we'd start blinking out the letters of the alphabet, until we could figure out what he wanted. I think in January, so several months later, he started to talk. It was very difficult, difficult times.
Honestly, getting off the ground. So, being a bigger guy, my chair is tall, and so being able to get from the floor to the chair was something that really was significant, a significant struggle. And even today, it’s something that I can do, but it’s not pretty and just you make ways to work around it.
I think trying to be mindful of what I couldn't feel anymore. I would get really frustrated, "Oh, I need to move my leg," you know, just remembering you’ve got to bring the rest of you with you, it's not just going to come. That was the hardest because I would get frustrated sometimes, and like, I would hit my legs. When I got frustrated and aggravated trying to do something and my mom would always come and say, "Stop, I love those legs, don't do that.”
I think the hardest part of rehab is finding out what you can’t do. You go into rehab expecting to have all of this happen, and wonderful things do happen in rehab. The hardest part for me was watching other fellow patients going through rehab and were learning to walk again. And they were starting from a wheelchair, and then leaving walking and knowing that I would not be able to do that. My time in the hospital was learning how to live in a wheelchair, not how to get better and walk again. So, that was a difficult thing for me.
You know there was like, in that initial phases, it’s really just realizing that things take four times longer than they use to, to do the simplest tasks. I would say that’s really just something it doesn’t change, you just have to get use to it.
I guess the hardest part was just not being able to do anything, you know, prior to starting. Because at the beginning, when I first told the nurse that I had a flinch in my finger, and that’s when they started, they put a machine on my hand—I always have my family laughing, I say “it looks like a ‘Freddy Kruger’ hand”—and it was robotic, and it just teaches you how to move your hand and strengthen it.
I had a lot of anger, so I was very angry at everyone for not doing things correctly; but at the same time, I had to, like, take a step back and say, "It's not that they're doing it on purpose; they don't know how I like things to be done." So, I was always just very angry that, you know, people were doing things wrong, or like I was upset at doctors for not having any answers, or, like, a spinal-cord injury, you know, I really didn't know anything about a spinal-cord injury before all this happened. And who knew that—well I didn't know—that there was no cure for a spinal-cord injury. And you know, I learned all this during the way, and it was very disheartening and, you know, very angry at western medicine in general.
Regaining balance, you know, getting from one seat, seated position, to another. Being able to lift the spoon back to my mouth, being able to brush my teeth again, being able to shave— I remember the first time I learned how to shave again. I actually cut my lip, my upper lip, and I was scared. Trying to learn how to cut something again, but I had to use two hands instead of one. Learning how to write was another milestone. What else…putting on my own shirt, something I couldn’t do at first, but I had to work at it. It became, you know, a part of my life to regain those, that ability to have that independence. So like I say, brushing, all those things that you want to be able to do in your, in a normal life, you know, day of life, even bathing part of my body again, was something, you know, too, was a milestone. It took time, but I got there.
General day-to-day rehab wasn’t hard at all, because I was so determined to prove them wrong. I mean, in my mind, for the first months, I was still going to walk out the front door. And I worked so hard with that goal in mind, that by the time I realized that I wasn’t going to walk out the front door, I had progressed so much further than anybody expected that I would.
The hardest part of rehabilitation for me was not being able to be with my children. And I thought to myself, you know, "Who could be a better parent?” “Who could love my kids more than me?" And I felt so guilty because I was the one who drove the car, I was the one who caused it. And having my children to be in the care of obviously my loved ones, but still, I think I was just so—that made me so sad, yeah, so sad that I wasn't there for them when they needed me the most, yeah.
The hardest part to adapt to during my rehab stay was the things I didn’t already know about. I knew that a spinal cord injury would cut off basically the wires that control my legs. But I didn’t understand the internal stuff that would change. Homeostasis, bowel, bladder, sexual functions. I, at that time, felt like I was at the peak of my sexuality. I felt like that was a big part of how I identified myself, with sexual prowess. It seems shallow for me to say that today, but I know that is truth about myself then. And that was stripped away from me, and that became a very critical part of my rehab. So far as when I was setting goals with my occupational therapist, they said, “what would you like to do as a career after this if you have to change?” And I said, “I would like to be in the adult film industry,” because I wanted that aspect of my life back, you know. And if I had to frame it in a career, then that would be my best answer.
Oh, just trying to get through each minute, and just hoping, you know that, and he was going to live, he wasn't going to get sick, or, you know, catch anything else. I was so concerned about a brain injury on top of his disability, or the injury that caused his disability; I was really concerned about that. Knowing that he couldn't move anything, I didn't want him to lose any of his intellect.
Being able to sit up where they put the chest brace on because I just had my back butchered open with some 66 staples, and my left hip shaved. That they wore this brace, and just trying to sit up in the bed, I felt like vomiting every time they did it, so they had to lower it. Even just getting to the point where I had to transfer from my bed to the wheelchair-I couldn't do it because I was afraid I'm going to fall, because I didn't have the use of my legs; everything was lost. And even just to think about putting on my pants and socks, it was personally just impossible because I couldn't move. So, I really just hated the beginning steps of all the rehab, OT and PT.
The pain, the pain. Well, I have orthopedic issues in addition to the spinal cord injury. And I’ve got pins, and rods, and all of that, and at first, I couldn’t bend my legs to even get in the wheelchair. Excuse me. So, I had to ride around in one of the hospital ones with my legs like this. So, being in constant pain is something totally alien at first, and you have to figure out a way to deal with it, not pay it any attention. It’s always background noise.
Being tired, when you’re tired you can’t think straight. And, it was nine months of running up and back—I think we missed only two visits out of the nine months.
I mean not being able to be to do it instantly, when I wanted it done. You go through a little, you get aggravated you know. But the more I wanted to do it, the more effort I put to it and the more I got it done. But I don’t know really what the hardest thing was, you know, everything was hard in the beginning. It’s relearning everything, your whole body, and learn how to do everything with your upper body. You have to drag these things around.
I’m not sure. I think it might have been the fact that I had to see her struggling, sometimes be in pain. And, be stoic about it, be strong for her. Have an uplifted spirit, but not jovial.
Having to spend all day like up because it’s exhausting at first. I mean, gosh, they get you up at the hospital, in rehab like oh, 6:00 in the morning. They’re waking up at 5:00 to have breakfast. You’re pretty much in a class or something by eight-ish. I don’t know if it’s still that way now or not. But it was hard to get back in the swing of things.
My neurologist, he was actually the on-call physician on the day I was shot at Kennestone Hospital. He did the x-rays and whatever they needed to do the tests there. And, he sat my wife down, told her the bad news—never walk, eat solid foods, breathe or anything on my own again. And so, he treated me while I was in Kennestone and then I went back to see him probably six months later. I don’t even remember what I went back for, it might have been just a follow up visit. But I walked into his office with nothing but a cane—actually, you know, I had forearm crutches. And, when I walked into his office, he sat down, and he teared up and said “there’s no medical reason why you just walked into my office.” He said “I cannot describe,” he said, “there is no reason. If someone would’ve told me that you would walk into my office, I would call him a liar.” He said “there is no medical reason.” And, I know my reason why I walked in. God has more plans.
Having to cope and accept losing the life that I had before, and not being able to go back to do those things. The physical part of the injury—getting around in a wheelchair, learning the transfers and stuff like that came pretty easy. That was a challenge that was, since I was already athletic, and enjoyed sort of physical challenges that I was like, “okay, I’m going to do whatever I can to do to get where I want to be.” And so that part wasn’t the toughest part, but definitely not being able to go back to the life that I had before was the toughest part for me.
I think the hardest thing about rehab was that it was really monotonous, and that it wasn’t really exciting necessarily. I was an athlete before and I loved sports, and I always tried to compare rehab to sports and think of therapy as practice. But, the hard thing about it was that there was no playoff or championship, then a season, and then a lull, and then you up start again. It was just always the same, every day, every week, and you have to get up and do the same thing. But, you don’t have this big thing you’re working towards. So, one way that I tried to deal with that was setting specific goals, or time myself a lot doing things and try to see if I could get the time down to make it a little bit more competitive. But, just the monotony and the lack of excitement was really wearing. My dad would say, “It’s a marathon, not a sprint,” and I was never a patient person, so that was definitely the most challenging part. Every day, every week, you get up and do the same thing.
Yeah, bowel and bladder, I mean, at first you got people doing it for you, and you’re like, “Ehh, I got to do that?” That’s the Achilles’ heel of the whole thing. I mean that stuff aside, this you can deal with, that especially when your body’s still trying to regulate itself. Without diminishing the terms of it, that’s the tough apple right there.
The hardest part was, was when I went home for the first time, was to actually see the chair beneath me. I, I could, I wasn't doing the things I used to do freely. I mean I couldn't go down the stairs on my own to get to my friends and, the, the social part of it all, of my friends, you know, not being comfortable around me at first, was very uncomfortable. I think the social part of it all was the most challenging part of, you know, of acquiring my injury. So, it was pretty tough.
The hardest part in rehabilitation is watching other people do things I can’t do. Because I always want to be the best at everything, so then when I can’t even compete with the others, that gets tough for me.
The hardest part was seeing her struggle to do the most minimal thing and the exultation that I felt inside when she would accomplish it. It almost broke my heart because it was so minimal and yet it was a milestone, and I had to keep telling myself to look at this as a step forward.
Hardest part about rehab was that initially it didn’t seem to be having any success because I was getting this, just a little bit of movement in my wrist, “and that’s all I get from six months of therapy?” I mean you know, and “nine months I get a little bit of ankle movement? Oh boy.” I mean. But eventually that one muscle became another, and it was sort of interesting after a little while, I started to enjoy watching myself get new things, almost like watching a baby develop. You know, it’s like, okay now at first he can gaze, and then he can smile, and then you know, can stand up eventually, and then he can walk, and every one of those are milestones. So I had a bunch of those, just any particular muscle. I mean I’m still working on this left triceps, and it’s coming now, but it’s 10 years out so it’s improving, still getting better, still watching it improve.
The hardest part was at first, when they were like getting started with the actual workout therapies, knowing the fact that I had no muscle tone was just like depressing. The fact that I couldn’t even lift two pounds, I just laughed but it was like a depression laugh, kind of. And they were like, “you got to work harder,” and I was like, “how do you all expect me to work harder, I can’t even lift two pounds.” So, it was a push to get started.
It’s funny because a lot of people say this, bladder. Because it took, that was probably the longest, it took him about four months for his bladder to come back. And that was probably—it was rough because it’s painful, it’s very painful. I don’t know if you’ve ever talked to anybody about that, but it’s very painful. And that was the hard part of the rehab for him, and the nerve pain.
He was in Loyola, which is, you know, I’m sure they handle these critical situations all the time, that’s why he was airlifted there. But, they know how to handle the emergency, the crises. You know, when, the fluid on his brain built up, they were on top of that immediately, but the overall handling of a person in his situation being a paraplegic, it’s just not what you would expect. You know, even the physical therapist at those type of hospitals aren’t what they are when you come to a rehab center. They don’t have the background with people in his situation, and, you know, basically he laid in bed for a month is how I see it. He didn’t do a lot of therapy—don’t get me wrong he had a lot of other issues going on, you know he broke a wrist when he fell, not only his back, so that was healing so he couldn’t do a lot of physical therapy—but when he came to rehab obviously, they worked around the wrist issue. So, you know, it’s very surprising to me about how hospitals, how much they don’t know how to handle people in this situation.
Being 17 and having to understand difficulties. Like when I was in the hospital, I remember I would go, “how am I going to pee?” Like, I didn’t know anything about what a catheter was, what bags were, I didn’t know any of that stuff. And so, my eyes were opened really wide to healthcare, and the community and what is all out there like at a very young age. Most people don’t have to worry about that until they’re older. And so, that was my biggest obstacle was the bathroom issue, like I hated it and I still hate it to this day, 24 years later it’s still horrible. But you know, that was my biggest weakness when it came to rehab was trying to deal with that issue.
That understanding rehab doesn’t mean walking again. It means rehabilitating, which you do have abilities to do and that was probably about the hardest part. I had to block out of my mind that “I’m walking out of a hospital” because that was my mentality. And it eventually did help me through the process, but I had to understand that I still had a spinal cord injury.
The hardest part was getting to a point where I had enough strength and endurance to actually take part in full days. And maybe even post-rehab the harder part was coming home, going to work, and then realizing two or three months in that I could go to work and work a full day. But I couldn’t go out with my friends unless I left work early and took a nap. So, the hardest part was maybe getting that endurance back and it took me two years.
Learning to deal with the problems with bowel and bladder control, and what-not, like that. That was the hardest part. Working hard, working my arms, doing whatever I got to do for exercise. I was very physical before I go hurt, working construction, so that didn’t bother me. Stuff you can’t control—that’s what would bother me.
I really wanted to get things done yesterday. Being very proactive, forward, I’m very much an instantaneous results person because of my military background. So just allowing the process of progress to go through, the way your body’s able to, was the hardest thing for me. Everybody was telling me I was doing great, phenomenal, whatever, but I was my own worst critic. So, just being patient with the process of progress.