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Adapting to a Spinal Cord Injury Over Time: Personal Experiences with Paralysis
Quality of Life After Spinal Cord Injury
Dealing with it. I mean, I’ve not cried about it in a long time. I mean, that takes a long time not to get upset about it. I mean, stuff happens, and we just move on. That’s what life is about anyway.
The way we talk with each other. Like before, I mean we were married for 10 years when he was first injured. But now we feel like we can talk about absolutely anything. I mean, we know everything about each other. We’ve done bowel programs, I mean, I’ve done bowel programs with him. We literally know each other completely. So, I mean, we talk about everything. Our communication is just probably the easiest thing with us now.
Everything, everything gets easier every day. I remember five years ago when I was here, I couldn’t brush my teeth, I couldn’t brush my hair, I couldn’t do anything. I wasn’t able to drive. So, every day gets easier. Once you get into a routine, once you get into a pattern, you’ll get used to doing things a different way.
When I was first able to get dressed it took me an hour, and over time I’ve been able to whittle down to 15 to 20 minutes. And so anytime I’m trying to figure out how to do a new skill by myself, or anytime I’m taking on a new challenge by myself for the first time, it usually gets easier.
My endurance is much better, so that enables me to do a lot more things that I usually couldn't do. So I think that has made a big difference in my life.
We have so many things at our finger tips now that make our lives so much easier. And not only make our lives easier, but make our quality of life so much better. I mean, my first wheelchair that I got, 55 pounds to move around in. You know, it was just a mammoth of a tank built out of this heavy chrome and so forth to push that in. Now we push around with wheelchairs that are made out of aluminum or titanium that weigh 16 pounds-18 pounds. The first wheelchair growing up as a kid, you know, when I started driving, just to lift that up and throw it into the car was like unbelievable. Now, in this day and age, you pick your wheelchair up, and if you don't throw it right, you'll throw it right outside of the window on the passenger side. I take advantage of technology, and it's only getting better.
I’d say we were always very close as a family, okay. At first, I hated the wheelchair. It was like a double-edged sword. You love it and you hate it. It gives him mobility, independence and stuff of that nature, but you still hate that it happened. Once I learned that he still had his emotions, his thought patterns, he was the same person, emotionally and just not physically, it was much easier to accept and say, “what do you want to do?” You know, “let’s figure out a way for you to do things. Let’s figure out a way for you to drive. Let’s figure out a way for you to open the door for your car and be able to get in.” He loved to fish, so I came up a way for him to fish. And at this point, we’ve got a patent now, people that have no hand function they can fish. And so, just finding things to make his life easier gave me a lot of joy, to be honest with you.
Probably like with me being more independent, showers and stuff. Like showers is my main thing, and then like at first, I wasn’t able to lift a laundry basket off the floor to do my own stuff. But now I’ve gotten to where I got strength, strength is probably what is helping me get through it.
For the longest time, I couldn't look at pictures, not baby pictures, but pictures when he was in high school. Sports pictures—because he so good at baseball, and so good at sports. Pictures of he and Faith before the accident, because he was just shy of being 21 years old, he was turning into a man, he was no longer that little boy, he was just blossoming to that young vibrant man. Physically, he was awesome and just, you know, almost into his third year of college, and just about ready to propose to Faith, and life was good. And so, that was, that's the "trauma moment." I mean I have my happy times when he was little, although I can't look at baby shoes, because it reminds me of him, his first steps, and now he has no steps. But yeah, that was hard, but it's gotten easier and the music, and I mean, I've lightened up quite a bit.
Managing my care has gotten a lot easier, like, with my, with all of my different PAs because I've interviewed so many PAs. So, telling them what I need and how, like being an employer, that's gotten a lot easier.
Everything. Talking to people has gotten easier, telling people about embarrassing things has gotten easier, getting dressed has gotten easier, transferring from chair to car—it's all a piece of cake now. I feel like I could just do anything.
Well, he's grown up, he's on his own, he can handle himself, he's much smarter than I am, and he knows what he's doing. I mean I, you know.
The ability to get out the door, the ability just to sort of do the daily routine type of things. You know, through trial and error, through systems that are in place, through some level of control. Still having the budget an amount of time that’s greater than what it used to be, but to a degree that it’s manageable.
Everything’s gotten much easier because I’ve learned to be able to sleep on one side, and I can just lay and be in one position, and I don’t have to turn. Right, so the durability of my body has gotten better. What else—just being in public has gotten much easier over time, I don’t even think about it any more. Even dealing, like, with little kids, and families that are, “Woo,” and I’m actually just like, “Hey.” If I’m the first time they’ve seen a guy in a chair, I want to be a good representation of that. Kind of like the first time a kid sees a big dog, the dog bites him, and he never likes dogs anymore. Like, I don’t want to be that dog, right. So that’s gotten easier. I think working has gotten easier, basically pretty much everything—it just takes time to learn.
It's also gotten a lot easier, I mean, tremendously easier, to access the world. The changes that I have seen from 1984 to 2010 have been wonderful. They're never quite enough, of course, but I can go to almost any motel or hotel, and there are accessible rooms, and many of those rooms now in motels have roll-in showers; there are curb cuts, there are buses. I went to the national parks, and they are wonderfully accessible. Now much of this has been because, of course, we passed the 1990 Americans with Disabilities Act, which is the civil rights law for people with disabilities. In this country, I expect theaters, and movie houses to be accessible, and I expect to be accommodated.
Basically, everything has gotten easier. Getting around, transferring, driving. And like I said before, that chair is part of my body now, I don't even consider it, like I don't even, like, think I'm in a wheelchair, it's like normal.
Taking care of myself. I was like, a what do you call it, a hygiene freak. I’m like very clean and very—and when I couldn’t clean myself, and do all those things for me, that just irked me to no end. So, being able to take care of myself, and be clean, and being able to do that is huge. Because, I think that when you’re not able to do that, it contributes to bed sores, and just your skin breaking down and things happening. So, it’s very important that you’re able to take care of yourself and be clean.
The inability to walk is what people see, it’s really just the tip of the iceberg. You know, a lot of the secondary issues that people don’t understand, there’s still a lot of attitudinal barriers, if you will. You know, when I was first injured, everybody focused on the architectural barriers, you know, because 35 years ago, nothing was accessible. You couldn’t go to a restaurant; you couldn’t get into a bathroom, and so forth, so everybody was like, “it’s architectural.” Over the many years, I’ve seen attitudes change a lot. I mean, you see people in chairs out in the community all the time now. And you don’t get the gawks and the stares like we used to get. You know, it was like, “What is he doing out of the home today?” People were like shocked to see you out in the community. You know, we’d go out to a restaurant, and the waitress would ask my wife what I would want ordered, and it was like, “Hello, I have a voice, I have a brain.” And, you don’t get that today, fortunately. People are more open to looking at me as a peer, as opposed to some poor crippled guy there.
Probably what’s gotten easier is parenting, like that’s only because my kids are self-sufficient now. They can get themselves dressed and they can do everything on their own. It was very hard when they were little, you know just every little thing was difficult, but it’s better now.
Everything actually. You know the more time, the longer—I’d be going on four years at the end of the month—the longer it goes on, the easier things get. Like getting dressed in the morning, bladder and bowel issues, I mean it’s just, becomes routine. You got allow more time for this. Used to be, I used to be late almost everywhere I went, now I’m at least 30 minutes early because you got to, might have an incident. I seem like I have more time now, I’m not rushing, I don’t blow life away.
What's made it easier for me is seeing him, you know, he's happy, he's got a great job, he's married, he's got kids. He told me about two, maybe two-and-a-half years ago, that if he can change the night of his accident, he doesn't know if he would. And, for me that was just like, wow, because I thought well why should I just sit here and hope every day or wish every day that I could change that night when he really is okay. And, why should my mom worry and—my mom told me one time that every day since my brother's accident, she feels like she's going to throw up, like she feels nauseated, and has every day since the day of his accident. I mean, that was 10 years ago, that's a long time to feel like that. And so, I told her what he had said to me when he told me that he didn't know if would change the night of his accident, and I think that that has just been life-changing for all of us, because he's okay. We need to know he's okay, and we need to be okay.
When she would say that her life is better today than it was before, now she has a purpose that she didn't have, and the time to think about those things, and do those things. Those are the types of things that I now realize, with age, it's gotten easier for me to accept all of that. And to say, "you know what, I get it now why, why this happened." Because that was the life you were meant to live, or this is the life you are meant to live.
Relaxing, I will retire in February, this coming February, and will move back to Florida. And, I’m looking forward to having that downtime, and not working, and just being, enjoying living every day.
Physically lots of things have gotten easier since day one. I’m a totally different person than I was 10 years ago on February 14th 2006. But I’ve also learned patience and that’s improved. I’ve learned to slow down a little bit. I was a pretty played hard, worked hard, enjoyed life hard type of person before I got hurt and I’ve slowed down. So, maybe having a spinal cord injury at 44 kept me from getting a heart attack at 54, maybe, who knows.
I would say communication with other people, the Internet, computer voice recognition technology. What I'm wearing right now on my, on my vent is called a Passy-Muir Valve. It allows me to speak on inspiration as well as expiration, I would say, and it, it greatly helps your ability to communicate. Instead of when you're on a ventilator, you're only getting, when you only getting positive pressure, you're only allowed to speak as you're getting a breath. And so this is really, you know, allowed me to communicate a lot better with people, and for myself—I mean, nobody really even realizes that I'm on a ventilator if I speak on the phone or anything else—so but that is called a Passy-Muir Valve. For everybody that's on a ventilator and would like to give that a try, it's very inexpensive. It's a very small, little plastic device that will go right on the tube of air, and could really increase your quality of life down the road.
Oh, a lot has gotten easier. Like I said, he’s more independent, he drives, he worked for a long time, he worked for many years. But, then he got a bed sore—as they get older, their skin breaks down more—but he works out of the house. And, he comes to the house, and he comes to visit. He coaches; he’s very self-sufficient in many ways, as much as he can. And, I’m very proud of him, he’s my hero.
Easier? I don’t know if things have gotten easier. I think things have gotten to a place where I’m able to cope, that’s where it is. I’m coping.
I think everything I do has gotten easier. Whether it be going up and down stairs, going up and down a ramp, going up and down a sidewalk, pushing through gravel—it's gotten easier because I'm, I'm continuously doing it over, and over, and over. I tell everybody that. Everybody says, "my God, everything must be easy for you now that you've been in a wheelchair over two decades." I tell them, "you know what? No, I've been in a wheelchair over two decades and I'm still challenged, I'm still challenged." It's still tough going through some places, but I've armed myself with the experience and the knowledge that now these challenges just become easier.
Not crying. I don’t look at the wheelchair and automatically cry. I used to tell someone, “That’s the first thing I see in the morning. I get up, I see the stair glide, I see the wheelchair at the bottom and the top, and I could break into tears.”
The routine of the day-to-day, at first with getting help in the morning, getting someone to help me do my morning stretches, and bathing, and the bowel program, and help with breakfast, getting dressed, all of that—it just seemed so much at first, and to think that I’d be doing that every day. But, when you start to get more comfortable with it, it becomes almost second nature. And, I will tell you that is the biggest transition from something being difficult to being more easy on the day-to-day. That is the most significant one.
Well, I’ve learned to entertain myself and, you know, I finally got my meds right. I was depressed for five years, I really was, and just you don’t know how depressed you are until you’re not. And, I’m finally content. I’m not desperately searching for something to fill my entertainment for a while and on to the next one when I got tired of that.
I guess your routine gets a lot easier. Knowing how to manage certain situations has gotten easier. You’ve kind of been there, and you know how to get yourself out of a predicament from past experiences. Daily life, the little things, the added burden that the disability can put on your daily life has gotten easier because we’ve gotten much better at managing that.
Everything gets easier, every single day, the more you do it. Transferring in and out of the car, people look, they see how fast I am. And I say, “It’s like tying shoes, you do it every day you, get better.” I think being able to travel as much as I do, I laugh when I get on a plane, and there are people there to help you. I think I’ve trained more people on planes on how to help somebody in a wheelchair than they’ve helped me, just because you get more proficient the more you do things.
I guess what’s gotten easier is Marie assuming responsibility for herself completely, so that I can be the mother and she can be the daughter. We both know that if there’s a need, I’m there in a heartbeat, and things will be taken care of. But, I have this confidence—you know, I’m not going to live forever—that Marie will be able to take care of herself.
She's gotten progressively more independent, so her need for a caregiver, year by year, has gotten less. So that's been much easier on all of us. She got her driver's license; she drives now with hand controls, so she does her own transportation. So almost in every category, things have eased up.
That there are certain things that I no longer miss. At first, there were things that I thought I would never get over, that I'd never be able to go surfing, I would miss the sand between my toes. And you know those sorts of things initially, you know, were overwhelming, that I would never do certain things, or never be able to feel certain things. And then I caught myself the other day having a hard time remembering even what it felt like before I had been disabled. So you know, that doesn't even bother me any more, I don't think about those things, I feel like I can do just about anything I want to do, so it doesn't, it's not nearly as big of a deal as I always thought it'd be.
At first I really didn't like—I noticed that a lot people would look at me, and that really bothered me, but now that's gotten a little easier. It's very rare to see a woman in a chair, especially a young lady. So now I understand that people are not looking at me like I'm a freak, it just real like, "wow, look at her." So, that's gotten a lot better.
I'm able to go to the grocery store now by myself. I get a little basket and put it on my legs. I learned how to push a cart, but I don't want to take that much food home, and I've found that if I can just fill the basket and take that home, that's all I need, you know, for a couple of days. So I try and keep the refrigerator and freezer kind of stocked, and then go through that, and just every few days add a little bit—you don't want to go hungry.
Everything. Yeah, I would say literally everything has gotten easier. Even the simplest things like eating sandwiches and not having them fall apart. And the big things too, like getting out of bed in the morning, and getting dressed, and driving, and yeah, everything has gotten easier. I can’t think of anything that physically has gotten harder.
Everything has improved for me. I've seen improvement physically. You know, I started off as being 100-percent dependent, to now being 100-percent independent. I've gone from taking one class a semester, to finishing school, having a full schedule and doing an internship, and now having a full-time job. Not being in a relationship when I was first injured, to now being married, and working on having children. So, definitely everything in my life has improved
What’s gotten easier over time is life—everything with a wheelchair, curb hopping, relationships, business, everything, because it’s about who you become as a person. The biggest thing is you got to realize that it’s not about what you have, but it’s about who you become.
I sleep at night now. It wasn't just months; it was years where I didn't sleep at night for various reasons: because Carrie needed me, because I had anxiety and nightmares, and what if the phone rings again at 2:30 in the morning and all of those things. So, I feel, although I don't feel she's completely launched, she's quite independent, much more independent than I used to think when I woke up in the middle of the night four years ago.
My chair is my friend, my chair, I need, it’s a tool. It’s not that thing that everybody’s looking at, and it’s like, now I need this chair to displace myself, to take care of my stuff. It’s gotten easier managing my body, I swear to God—I’m on a schedule—the human body is amazing. Like, I’m on, every four hours, I don’t have, I don’t need a watch, every four hours my body tells me, “Oops, it’s time to go do that thing.” So, you know, I got to go, you know, drain or cath, catheterize, I got to go, you know, to drain, self-cath, every four hours. Every other day it’s like, “Whoops, its like, bowl program time,” and I don’t need a clock, I don’t need a chart on the refrigerator. It’s just your body starts adapting, and that’s the wonderful thing about life that, you know, it compensates, it gives you something else. You just got to have strong enough sticker on to find out what it has, you know, waiting for you.
It’s enjoyment. Even though it was bad at the beginning, now it’s enjoyment, we have a lot of fun with one another. And he gets a kick out of us, you know, of us enjoying. Now he gets up, and I say, “Get up and walk around,” and he says, “Well, give me a hand first.” So it’s very enjoyable. What he went through it’s just the past, just forgot about it. You know, he did what he did, it happened, now he’s on his own, he’s doing good, and that. So, everything seems coming along very great.
Well over time, everything's gotten easier. Taking care of him has gotten, it's much, much easier now than it was in the first place. Because for one thing you have to learn how to do a lots of things, but now it's just like being two people for a while. Like I get up, and I get him washed, get him dressed, and everything—and myself. Before it took a long time, but now it doesn't.
When he was first in the hospital, I brushed his teeth, and helped him get a bath, and lifted him into bed, those types of things. And now, I do none of that. He’s completely self-sufficient, and he does his thing and I do mine.
Living my life, just feeling that, you know, ok, it's, I've always, you know, you have that; you have your own life. And, you know, for a while, you just feel everything's meshed into one, and I think now I could, handle it better that now I can go out, and pursue my own things in my life without, you know, worrying so much, or feeling bad, or that you need to be close, or, you know, because it's kind of, you know, the true crisis period feels like it's over now. And now, everything is just, you know, slowly progressing.
Transportation, because when I first moved up here, I moved up with pretty much nothing. And the different vans, and buses, and going through that whole transportation issues I think for like year and half, two years, it was like the worst ever. You get up at a certain time to catch the bus or whatever is supposed to pick you up, and they’re not there, and you got to wait. Then when you get where you’re going—say, when I come here in the day program, I used to be here like 8:00 till 4:00 or 5:00 in the evening. And they know the schedule to pick me up, and they may come 6:00, 6.30, sometimes later. And then what can you say if they say, “there was traffic?” What can you say if they say, “it was a wreck?” So, it’s like Atlanta, I have no control over my driving, so that was like the most horrible experience ever. So, when I started driving again that was the best.
I worry a lot less about Mike and the care. I know that he is very attuned to his skin, which is obviously one of the first things everyone talks about. And you need to be really vigilant about skincare and pressure releases, and make sure that you do everything possible to avoid breakdown. Mike's great on that, I've stopped worrying about that. Mike does plenty of exercise, eats well, I stopped worrying about him really being in good health. So, there's a lot of health issues that I've stopped worrying about.
Absolutely everything has gotten easier. Every aspect of everything because it’s normal, everything’s normal now. So far as transferring, I used to use a slide board when I had to transfer, and now I’d never want to use a slide board. Just little things, dealing with cold weather and all that, there’s tricks to dealing with stuff.
We're really good at communicating, and we don't have to work at that anymore. We're really good at reading each other because of our communication, and so I think that's really easy for us.
Living independently gets easier. Finding ways to be able make things faster and easier for you gets easier. Getting into my car, you know, breaking my chair down, putting it in my car, exit faster and easier, or I can do it a lot faster and easier than I could in the beginning. Getting dressed in the morning, taking a shower in the morning, doing all the stuff that you need to do to get ready for the day, and then also get ready to go to bed at night. Just being able to get on the couch. I remember when I first went home, I’m like sitting up in my chair watching TV forever at night and stuff, and I hated it because I wanted to get on the couch. And then finally, I just started trying to get on the couch, and now I get on the couch just like before. So, that’s something that’s gotten easier.
Everything, everything. When I think back to 20 years ago, coming home from RIC, just the course of the day, by noon I was exhausted back then. Now, I mean, I'm up at 6:30-7:00 in the morning, dressed, and I can go to like, 10:00-11:00 o'clock at night, and, I mean, I feel great. You just feel like a completely different person, you feel like you've blossomed, you've matured. And, I mean, you actually understand your situation is not about the body, it's about the spirit.
Oh definitely that fact that he’s taking care of himself makes things easier for me. The things that he’s, especially lately, he’s doing more and more around the house now that he’s home all the time. Those things have gotten definitely easier. You know, he’s refocusing on that. You know, when he first came home, having the kids there in the afternoon, he didn’t know, like homework routines, snacks, and things like that, that was a whole learning experience for him. But now he’s definitely got that where knows when they come home they get a little downtime, then they do homework, and things like that. You know I think it’s, him and I have talked before, you know, he always took pride in the job that he did when he worked, and we kind of talked after he was struggling with the kids being there in the beginning and not them knowing necessarily how to get them focused on what they needed to, and them not necessarily listening to him. And we talked about that, I said, “You know, you managed a job site before, you can manage two little children. You just have to take pride in what you’re doing, and know that you’re this so they’re going to be better. I think that helped a lot putting it in those perspectives, that he’s still doing valuable, doing definitely important things. To me raising the kids is more valuable than working, actually.
My morning routine—I remember my morning routine taking like two-and-half to three hours, now I’m in the shower, bowel program, dressed in like an hour, hour and half. So, I thought that in the beginning was never going to get better, I thought that I was going to be taking three hours to get ready for the rest of my life. And if you would’ve told me in the beginning that I will be doing it in half that time, I would have told you were crazy. But the fact that I can do it now and half that time is amazing.