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Emotional Stress a After Spinal Cord Injury: Personal Experiences with Paralysis
Hospitalization After Spinal Cord Injury
I kind of had a hard time with stress at first, because you’re so concentrated on what’s happened to you, it’s kind of hard to take in anything else. My dad kind of really had a hard time, and he came to see me when he wasn’t supposed to come to see me and it was a little upsetting. I think I recall messaging my sister like, “can you please come get dad because he’s not supposed to be in here?” I couldn’t tell my dad myself that he needed to leave, so I had to tell a nurse or whatever that my dad needs to leave. So, it was just, it was kind of hard.
I did a lot reading. I did lot of research on spinal cord injury, a lot of—that’s me, I tend to overthink a lot of stuff. Maybe not overthink, but I want to control lot of stuff, so I want to know everything. Medications they put him on, I had to know what the side effects were. They would put him on a new medicine, I was like, “before you start it, I have to know what this is.” And they were like “we know what we’re doing. Hold on.” And then I’m like, “no, no, no,” I’m like, “let me check this first.” So, that was pretty much what I would do is I would just, that’s how I coped. That’s how I would deal with everything. I would just research everything and talk it over with him. I also bought the family in everything too. We made sure that we saw eye-to-eye on everything too.
I cried a lot. I cried a lot, in fact there was one day when my PT sat on the therapy mat with me and handed me the tissues. I also was really interested in learning about what it was going to be like to live with spinal cord injury. People were great at giving me informational resources. In particular, materials developed by other people with spinal cord injuries were really, really helpful.
I dealt with it honestly with just taking it day-by-day—not really worrying, and just being in a new environment, just dealing with it. There was a lot of young people on the 7th floor of the spinal cord injury unit with me, so we kind of just hung out, you know, got through it together.
I think I just took everything that I've learned through life, and I just, I applied it. I realized the situation that we were in, and that I was specifically in, and I relied on my support system. I made sure that my child was taken care of at home, and that she was in a safe place, so that I could keep my attention on Jim when he was first injured. I tried to maintain a structured schedule so that it was good for her, but I knew it was also good for me. So I just, I put into place a lot of the things that I knew already. I specifically did not want to drink any alcohol. I knew that there was problems with alcohol not only in my family, but in a lot of families in this situation, and that would be an escape. So I did not want to drink; I made that deliberate choice. As a matter of fact, people were trying to make me drink and I said, "No, thank you," I chose not to. I just really tried to keep a very structured schedule.
That’s a really personal question. The fact is that I was pretty angry at the world that this happened to me, and what it was going to mean for my life. I needed to get some professional help. Ultimately, when I was feeling well enough, and she was stable enough for me to be away from her, I started seeing someone and talking about the accident and my feelings.
You know, we were in such shock. We probably didn’t deal with stress very well. I mean, everything was centered around being at the hospital as early in the morning as possible and then staying as long during the day as we could. And just, I don’t know, adrenalin, I guess. I don’t know, just going through motions almost of saying, “what’s going to happen next?” “What’s going to happen to him?” It’s such a hopeless feeling, you know helpless.
Oh, the stress was hard to deal with. I had to do depression medicines for a while and stuff but I finally overcame it I guess. But yeah, I was having trouble wanting to eat, I just didn’t want to do anything at first. I was so stressed; I just wanted to rip all my hair out. I tried to find like hobbies, like I’m into a lot of plants, and animals and then coloring. I have an obsession with coloring and painting, so that’s, coloring just made it all go away.
It surprised me, because the strangest things happened. I didn't close off, I didn't close off the world—But I, I couldn't have anybody touch me. It was the funniest thing, even if strangers brushed against me, I couldn't have anyone touch me because I felt like I was going to burst. I had this emotional shell that was keeping me going. And, I couldn't listen to music, I loved music, played the piano, I couldn't listen to music because that was too emotional for me. And so, I didn't realize this was happening at the time, but in hindsight, I just realized that, I just built this kind of emotional wall around me. And that's what kept me, you know, kind of, I felt like if I broke that shell, I'd go over the edge. Another thing that I noticed when Darren had his accident, and I'm doing it now, and I'm very proud of the fact that I'm doing it now, I stopped crying. I, because I was afraid that if I let go, and I let the tears roll, they would never, ever stop, and I could never, ever get them in control again. So I stopped crying. But it took me a while to do that, and I can do that now, and it's healthy, and I can do happy tears, and I couldn't even do happy tears, because I just said, "once you start, Carol Ann, you'll never stop." But, I can do it again.
I think I ignored it and just dealt like—I watched "Simpsons" DVDs all day long, or, you know, hung out with whoever was coming to visit. I just, you know, distracted myself as much as I needed to to cope, I guess.
I internalized everything to the degree that I shared a room, initially, with a younger person, a young kid who had fallen from a chairlift. And he cried at night, and just really, really struggled. And people commented to the degree that “wow, you’ve been here this long, and you’re going through something so much more difficult, but yet, you never, we never hear from you. You never speak, you never.” And I just again I kind of approached it very matter of fact, this is what it is. Quite frankly, I was just anxious to get out of the hospital and get on with life so that I could figure out what I was going to do.
I think I just withdrew. My thing was like, “Get all the doctors away from me, get all these guys telling me I’m never going to walk away from me. I want to surround myself with friends; I want to surround myself with, like, positive energy.” And so we did, like, all this crazy healing stuff, and I just watched comedies all the time, and watched all my sports. And said, “Look, I have the rest of myself to be wrong, I have the rest of my life to live in a wheelchair.”—“I’m never going to walk,” and all these cliché phrases that they use. So it was like, “That’s me, that’s my future. Fine, but let me come to that when I’m ready to come to that, and I’m going to spend all my time trying to get better.” And that’s what I did, and, you know I just, that’s how dealt with the stress I think. I hated the drugs, because the drugs made me crazy. I had these really bad nightmares, and so I just tried to stay off that, and stay really focused on just healing.
Truth be told, I was in a severe depression the first two months. So I was, I’m putting on a front—I’m sure you’ve seen a lot of folks do that too, where you just fake it—and then I went through the whole phase of “fake it till you make it.” But during that next, that two months of depression, I just came across this point of clarity that I could either go down this continual spiral of destroying my own soul, feeling sorry about myself, and just bringing everybody else down with me. Or, just come to that “Jesus moment,” if you will, and just make the choice of either taking what I got, and going from that point on, and just going forward , and taking whatever lumps the along the way. I’m not going to lie to you, it’s not been the easiest journey, but for two-and-a-half years I don’t think I’m doing too bad.
For me, I’m a person of spiritual grounding, and I do pray a lot. And for me, that’s what I needed to do to be able to cope with it. And my son and I, we’ve always have had a sense of humor, and humor and prayer got us through those stressful moments. My son would say, “I can’t walk but I can still take these thumbs and knock you upside your head.” So, that would make us laugh, like okay, he’s still got it.
I didn’t, and it would come out as anger but anger at other people somewhat. And so, those first six months or year I guess were very unpleasant because I wasn’t a very easy-to-get-along-with person. Mainly because that’s how my—the way I was dealing with the injury was coming out.
I wasn't a real good patient sometimes. I could be very, I could be very cranky; I could get very upset at little things, despite, know, the medication you're on after the injury, both painkillers as well as muscle relaxants, Valium, things like that, which are useful to calm you down, that you don't completely freak out. But, I still, I would still get very upset very easily and very quickly. You'd look at yourself in the mirror, and you'd see somebody there that you don't really recognize.
I kept to myself, kind of withdrew from my own feelings. But yet, because being here four and a half, five hours away from home, and pretty much by myself here, initially with Maggie, I reached out to people, families, other family members.
The moment when I came to my senses so to speak, I'd been with him in the evening in at the hospital and he had said to me, "Dad, I almost got it all together." He was referring to his life in college, friends—they were rehabbing a house to live in and so forth. And I said goodnight and I went out in the parking lot and cried. I realized he was the one that was hurt, not me. And that made a big difference, from then on I realized that I had to help him, not cry because I didn't have a son I could play with or whatever.
The nurses, and one of the psychologists would kind of come in and talk to me and kind of try to talk me through it. And the one, I’ll never forget her, she actually told me, she said, “most people in your situation, they get more feeling and mobility back the more they nurse the injury.” So, they told me I should rub my legs, I should embrace them, I should massage them and do those kind of things, because that would help me to stimulate them to have memory, so to speak. So, once I started talking to them, and they would kind of encourage me, and literally kind of take my hands, and kind of make me touch my legs to kind of get through that, that’s what helped. Because up until then I just, I really couldn’t.
Dealing with stress is, I don’t want to say it is easy for me, I’m a very the-glass-is-half-full kind of person already. So, it was, I don’t know, I just accepted it, and said “what can I do to make it better, and to make it be who I am and live my life to the fullest?” So, when I have stressful moments, or when I did have stressful moments it was, “okay, this will pass.” Maybe a little prayer here and there, and maybe some tears, maybe some laughter. I find that laughter is going to get you through a lot of it. But you know, just to know that it’s going to pass, the stressful moments, and there’s going to be good on the other side.
You know, cry, be upset, you know, stressed. I’ve got a good wife, so she took care of me, she didn’t leave my side for 55 days. So, she was my stress relief I guess you could say, but I mean honestly, I accepted it, and I only had a few fall backs, but it is what it is, you know.
My stress was much more about me, my being insecure about how people felt about the way that I was handling things—or the fact that I, that I had chosen to sort of ignore it. Because I didn't have the, looking back, I now realize that I didn't have the skills to deal with it, and so my way of dealing with it was to retreat, and just to live the rest of my life the best way that I could. But I remember inside, the frustration and the stress that I felt about the fact that I knew I was being judged, and I didn't think it was fair. So I found, I found that to be very stressful.
I think because of my past history with athletics and different things like that my coping mechanism was the rehab. That I knew every morning that that’s what, I was going to have it waiting on me. So, there wasn’t a lot of stress. The biggest thing is being patient through it and that was very important to me. I had to learn to be patient through it. But the more I understood that it was a healing process, that it began to work better for me as far as my stress levels could come down a little bit. I didn’t have to panic about it, I just knew that in it through time I’d get better.
My faith helped more than anything. Some of the nurses would come in, and they’d say, “well, if you start feeling depressed then we have some medication that can help you through that.” And my response was always the same, “it’s okay, I’m not going to feel stressed.” So, my injury and the recovery was not a stressful period. The family dynamic with trying to balance where I used to be, the head of the household, and breadwinner and all of a sudden that was a big question mark. So, if there was stress it was in that area.
You know, it, this is going to sound funny to you, but I think a lot of it was just denial. And I wanted to pretend that this really didn't happen, and I was just in a different position now. I don't know if that makes any sense to you, but I was, I was, I really did just consider myself not disabled, at first. And I kind of, not that I still do, I mean I know how disabled I still am, but I, it's just kind of a way I deal with it, and you know, I'm just in a different—you know what, I'm the same guy I was beforehand, I mean absolutely the same. I am, you know, the same sense of humor, I have, you know, like to joke around, and, I mean, I realize my disability is about as severe as you get without, you know, going over the edge, but I do kind of, I do kind of, like just, put it aside, really. My biggest, my biggest, really what I think about is I'm lucky to be here, without a doubt. I mean if anybody realizes it, it's me, because I was shot in the cheek with a 357, and I should be dead. I should be dead from numerous heart attacks, I've had strokes, or not strokes, but seizures, I mean, I've had the whole gamut. And the fact that I'm not dead yet is absolutely incredible. And I don't know why, I don't know why it is, but it is. And so knowing that that's the alternative of what I have right now, I'm freaking thrilled to be here. That's all I can tell you.
You know, I'm pretty good about just blocking things out. So just kind of like, just let me get through this, do what the therapist tell me, you know, and get out of here. I guess you could say I almost suppressed it, because I really wasn't thinking about it. Probably not the healthiest choice, but it worked for me.
I used my therapy and my rehabilitation as my stress-reliever. Because I would go, and I would work in therapy, and I would work as hard as I could, as hard as I could, and keep going, going, going. Because I was always taught that it's not exactly what you do to get to the hardest point, it's what you do after once you get to the hardest point that actually matters. So, I would go and I would just, just work until I just was totally tired, I mean, just, just wear my body out, and that's how I would relive my stress. Because crying, I noticed that, I mean, it only helped me because I did it in a personal way, you know, in a secluded room by myself. So, you know, the stress, the reliever, really was, you know, actually therapy, and, you know, rehabilitating myself.
Well, I slept a lot, just chilling out to a degree; at first it was my way of coping. But, then as soon as I was able to get up in the chair and to move around on my own, I would spend hours out in the garden here at the Shepherd Center. Just being outside in the nice spring weather, just being out with nature, it was very tranquil and helped to calm me down.
I guess I tried to suppress it a little bit because I would be less stressed if my family was less stressed. One of my biggest fears in the beginning was scaring everybody away. I didn’t want to scare people away; I didn’t want to come off as being this depressed, morbid person. I wanted people in my life, so I really worked hard in not putting on a sad a face and trying to keep things light. Joking around was a good way to relieve stress and distraction, which was very useful. Whether it was distraction with TV or with visiting, things like that.
I had to be on an iron lung, meaning now they just pop a tube in your throat, but back then they put me in—they brought this old iron lung from the polio-era, you know, down and stuck me in it. So that was stressful to the point where I had a lot of acid-bile issues where I threw up a lot, you know that ugly green stuff. So, obviously I was experiencing some internal stress, and I was just going to those phases of being stabilized, being transported, being put in the iron lung and stuck in kind of an ICU. And so just that silence, my parents were real good, they bought me a poster of a window and stuck it up on the ceiling. And then I asked them for some birds or butterflies, so then they bought like a mobile of butterflies and hung it in there. So, for a period of time there when I was looking at the ceiling, there was something more than counting the holes in the ceiling tiles. I could actually pretend that I was seeing outside and that there were butterflies out there.
My own stress was difficult to deal with, and I found that if I channeled it into trying to understand the injury, understand what happened, interpret until I was sure of what the doctors were saying. Just getting clarity on everything relived my stress to a certain extent.
Badly, I dealt with it badly. I was a physician, I had, I wasn't working full time, but I had a pretty busy part-time practice which in many other realms would be considered almost full-time, with the number of hours we put in. I told them that I was taking a leave, effective immediately, and that was it. And my partners were great, but I made no effort to transition, to make that transition; made no effort to contact my patients, I couldn't deal with that. I said, all I can do at this moment is to concentrate my energies on my daughter, and that's about all I could do. And that was followed by a prolonged grieving process. Lots of crying, lots of times where it was very difficult to get up in the morning, and we got up because we had to get up, Mollie needed someone to help her with everything she needed in the hospital. I was the go-to person because I was a physician with all the other docs. So I was trying to manage all those things in the midst of all this tremendous grieving. And when she got back home, there were times when I would get her up and help her get to school, which was a several hour project at the beginning, and then I'd go back to bed, and I'd stay in bed for the rest of the day. That was literally all I could handle. And then, very gradually, you start to come out of it. There are days when you can actually think about something else for a couple of minutes. I had friends that pulled me into a book club where I think the first three meetings I just sat there trying not to cry; I don't think I participated in anyway. And then you start to talk to other people who have family members with spinal cord injuries, and you realize life goes on, and she has a life, and it's up to us to help her make the most of that life. So it was a very gradual process.
They thought something was wrong, because I ain't shown no emotion or nothing. Hey, can't do nothing about it, so have to deal with it. You know my brothers and those was, like, they don't know how I can deal with it, know they couldn't do it, because, you know, I'm a C4, unable to do for myself, I have to depend on everybody else. They keep saying, "How can you do it?" Say, "Man, I ain't got no choice." You know, I could sit around and be depressed, be really on pills, making things more worse than what it is. So, hey, just deal with it.
In the beginning, it was a lot of stress. I didn't want to seem like a burden on my family. My friends were kind of like, they didn't treat me different, but they were so concerned with my care and what I needed, I'm like, "well you know guys, let's just have fun, and let's just do like before," but it wasn't like that. Everyone was so concerned—"Is your chair okay? Are you okay?" So, I guess that was the stressful thing. Everybody was so concerned with me being okay, that that was stressing me to be okay, and some days I didn't feel like being okay. So, that was kind of stressful.
At the beginning of my injury, to say that I didn't have stress would be an understatement. I dealt with it in a lot of different ways. One of the things that I had to personally do was not only see a therapist for me because I could not believe that this was me. I had a very, very difficult time coming to grips with the person that I was becoming. And so, you know, I actually saw a therapist, but at the same time, I had to figure out how to keep my mind, and my heart, my hands from being pocketed into that sense of stress. So, I did something to kind of trick myself, if that makes any sense, by being extremely active. Whether it's being creative, whether it's just doing things for my children. I put my everything, you know, 100% in so that I didn't have vacancies within my time. So, I just kind of filled it up, so I didn't have room to have stress or disappointments.
I think I internalized a lot of it. I don't think I dealt with a lot of it. I tried reading some books on, you know, "When God Doesn't Make Sense," was a book that I read. Just some other, maybe talking it out with some of the nurses, a little bit, but I think mostly, I just kind of stuffed a lot of it; it wasn't healthy.
There was definitely stress. There were lot things going on, I was trying to keep up with my classes from the hospital. I was trying to do therapy every day, obviously in the hospital. Still see my friends and my family. It was a lot of things to juggle, and I think that, especially when I went back to school at first, I hid that stress fairly well in classes and around my friends. I think where it came out most was probably at home and with my family. And, I think that, probably similar to a lot of other people, I think that that stress shows most in the people that are the closest to you. And I think, luckily, they were really understanding about that, being patient with me.
I didn't really deal with it, I hated who I was, I hated who I became because of what they told me. So, depression set in, anger set in, all these mixed emotions set in to really just build up where I'd cry myself to sleep at night hating who I was, thinking that suicide was maybe the best option.
I made a decision, it was conscious because the stress was over powering. I made a decision to stop criticizing, you know, what I could not do, and I still struggle with that. And so the victories that were perceived by the people who were trying to get me to turn over by myself and that I'd put down, I decided I'd better start giving myself a pat on the back. That was the most important decision I could have made for myself was to stop, stop wanting to be the old Nova and accepting who the new Nova was. If I didn't do that, I would get nowhere. So that helped me take a deep breath and say, "You know how to fight this. This is hard, but I've had a lot of hard things in my life to deal with"— really hard things, really hard things to deal with, and I always did deal with them. So I had my own history as a good frame of reference to fight, but I had to make that decision, and that's what I did probably after two months, it took that long to make a decision like that. Up until then, it was mostly the stress of blood pressure, mostly the stress of failure so it was up to me to make the right decision.
I slept a lot when we were home. I didn’t handle the stress well when I was out of here. My blood pressure did go up; I did have to go to the doctors to get put on medication. And, we went to see a doctor and got antidepressants. And, we were able to talk to someone on the outside, who could give us pointers on what to do to make it better for us, and to be able to deal with it.
I really, to be honest, I couldn’t have if it hadn’t been for my husband. He’s a great anchor and just, you know, he kept me focused and being positive. Just supportive, and just always being there and making things easier for me. Just, I guess, taking care of the basics while I was looking after Sean, and pulling up the extra, you know, when things need to be done that I couldn’t do at home, he would do when I need to be with Sean at the hospital.
Well, with Lexapro I think, you know, medication was a protocol for my care when I came in. And when you are taking an antidepressant, you can’t really weigh out how it’s working for you because you only have one set of feelings at any time. But I think that was probably critical for me because it was a very stressful and emotionally challenging time. I think that it was that, and then I have a personal philosophy about obtaining your dreams, and pursuing your happiness, and not wasting your time. So it was difficult, but I had to fold this into that philosophy. And kind of one of my mantras in that is if you’re not vigorously pursuing your happiness, you’re wasting your time, no matter what your circumstances. And so, I was now dealt this circumstance, which could only be viewed as catastrophic at the time. And that was an enormous challenge emotionally, was to maintain a sense of self, my own personal philosophies, and fold in this new catastrophic challenge and still be me.
I think having someone to talk to was really key for getting away from my stress. I still worked; I continued to go to work, and I continued my normal everyday life, because it helped me to continue on. It made me realize that I still have to be me, I still have to be that person that does my normal everyday activities.
For me, dealing with stress was just to try to stay busy, and kind of keep your mind off of it, and keep doing things, keep trying stuff. Focusing on trying to get better. An example would be while I was in the hospital, I was really focused on what’s the next thing I need to do, instead of like stopping and talking to people about how bad this was. You know, I Iove to stop and talk to people. But it was like about what progress you have made, how are you doing. It might not necessarily be about what gains you made in your body, but like you know me as a quad, it would be like, “I opened that candy wrapper myself today,” or “I went to lunch and was all by myself.” That’s a huge thing you know
I tried to keep myself busy, moving around doing things, just keeping myself busy, not with it in the back of my mind, but knowing I had other obligations to do, I would go ahead and do those. Even though she was injured and she is my world, but I knew I still had other things to do, and to attend to and take care of, and that's what kind of kept me going.
I think I kind of had to put it to the side in those first few days and the first few hours because so much was needed of me. I needed to figure out insurance, and decide things about his surgery, and when it was going to happen, and where and to make sure that he was feeling okay. So, even though I was feeling high stress and anxiety, and I let myself have those moments in the waiting room when I was away from him. In those early days and those early hours, really, I had to put it to the side and just focus on “what does he need right now?” “What do we need to do right now?” And that’s kind of how I got through that time.
I went into pure action mode. I researched in action mode talked to anybody I could. I kicked into a mode that said I got to know everything there is to know to start to ask the right questions, since there isn't anyone else around that's, you know, doing it for you.
You know, of course I'd like to walk again, you know, who doesn't at that point in time, but I knew I had certain things in front of me, and I felt sort of determine that life goes on. I had a very clear perspective that, you know, there's good days and bad days, and there were certainly good days and bad days pre-injury. Even now, if I have a hard time, I sort of keep that perspective. It was actually an easier process than I would have anticipated, I mean, I was one of those people that looked at people in wheelchairs and said, "Oh my God, that's got to be so difficult," and it wasn't as difficult as I would have anticipated.
So, I was stressing about being normal. You know, I was worried that, “Am I going to be a freak?” I was stressing about all that. And, I didn’t think I’d ever be normal again, but just life’s a different normal.
I play pool, billiards. If I'm really angry, which never happens, and I feel very stressed, and I feel like I'm just overwhelmed, the whole world's crashing down on me, then I just go out and I shoot what I call aggressive pool. And, if it's somebody that I'm mad at at the time, I assign a certain color to that person, and I go out and just "beat the snot out" of the ball. But, I have found that pool is a great exercise, and it's a great way to get rid of your aggression. Within an hour—depending on how angry I am—two hours, I feel so much better. And then I can start thinking about putting the balls in the pockets and strategy. And that strategy then goes over into how do I solve this issue, how do I solve this problem
I lost being able to do cheerleading and going off to college. I’m moving back to my parents’ house, and all my friends are going off to college, and starting their lives and stuff. And so I definitely didn’t handle it well at all. I was not making good decisions healthwise, and staying out, not making good decisions. But I knew—I never gave up on my life or anything like that even as bad of the decisions I was making at the time. I still always kind of had hope that I would get to where I am right now.
I think for me, it was more so “do what I can” in that moment. So, a lot of the times when I felt myself getting really stressed or really anxiety ridden, it was because I was too much thinking about tomorrow. And I realized that tomorrow was hard to see like I said earlier. So, for me it was more so like “if I’m focusing on something right now in therapy, that is all I need to focus on, I don’t need to think about what’s next,” so I was just taking each moment. So, that’s how I really started to appreciate the little things because I just really took my days second by second and that’s how I made it through.