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Life Adjustments After a Spinal Cord Injury: Personal Experiences with Paralysis
What's been the most unexpected change in your life?
Spinal cord injury brings unexpected life changes. People living with spinal cord injury share their discoveries about changes in relationships, family, self image, employment, education and outlook on life.
Your life just takes a different journey. I mean, you may or may not think you would be where you were today. This wasn’t my plan. But thank goodness I was able to go back to my job, and my life and stuff like that. It just was not something you plan on, that’s for sure.
I grew up and lived in the same place for 18 years, and then I ended up making, oh gosh, I think four moves—undergrad, graduate school, internship, post-doc job—that’s five. You know, it’s nothing I ever expected to do; it’s something I did for my training in my chosen field of work.
The most unexpected change was probably the move to Georgia, and leaving all my family behind. I had gone to college only about an hour away from home. So, just far enough that you have gone, but you can go back anytime you need. And then I had gone, after graduation, I had gone to Virginia to do a fellowship with Library of Congress and I moved to New Orleans for a couple of months. So, like I’ve been for a couple of months here and there away from my family, but probably the biggest was the move to Georgia to stay. Although I only thought it was for 3 months for the internship at first.
I don’t know, I think it’s going to be what I reinvent myself as in these next couple years. Because I’m fortunate enough that I really think that he’s going to have his own life. My life is no longer as cohered by his as it was in past couple of years. So, there was a radical shift when I went from being an executive flying all over Latin America and to Europe every week, to suddenly being 150% focused on him. And now he’s gone, yes, he’ll be back for holidays and he’s still my child, but he’s doing his thing. He has his life and he has his future, and now I need to rethink what my future is going to look like. Because I have that peace of mind, because he’s on to do his life. So, I think that will be the radical change, I’m not there yet, I’m getting ready for it.
Being grandparents. That liberated our children in knowing that they didn’t have to pay for daycare to start their families.
The opportunities that his success has opened for the whole family. Especially going to Harvard, Harvard Business School, I mean, that's been such an experience for the whole family. The joy and the pride, and him being able to get, from "Mom, I never want to go out into public again"—"how could I do that?"—"how could I eat?"—you know—"how is that going to work?" To him, accomplishing this, and then getting a job with McKinsey and Company, which is one that many able-bodied people want to achieve, and him being able to do that. It's been a journey for the whole family, and it's been an awesome one.
The most unexpected change is probably how much I have embraced the disability community and, like, not just my disability but just in general. And understanding that there's this whole community and movement of people with all different disabilities, and that we really, like, have a lot in common and a lot of work to do and a lot to do as far as society is concerned with accessibility and ways of thinking. So, you know, since it was an identity that was sort of imposed on me, I had to embrace it and learn a lot about it.
I probably would have ended up either six-feet-under, or behind a prison wall. And, it’s, that’s where I was headed when I was 16 years old, and I would never had known, at the age of 46, that I’d be doing what I’m doing now.
Well I learned a lot that I, I didn't know at all about disabilities, and became interested in disabilities rights.
Actually, I think in a weird way a spinal cord injury was probably the best thing that ever happened to me. Because, I feel like I kind of took the “red pill” in the “Matrix,” or whatever. Right, I’d rather live the rest of my life, like, fulfilled, rather than a life with my head up my rear end. And, it kind of taught me what’s important—that doesn’t mean that I wake up every day like, “Don’t sweat the small stuff,” and all those other cliché things. But, I really feel like I’ve got a great wife, I’ve got great family, and things can be frustrating, but I feel like at least I’m being the best me I can be.
How sensitive I am to people who are different. I had compassion before, I had what I thought was compassion before—maybe it was pity—but now I sincerely feel that I have compassion. Because, when someone with a disability comes to our office, and everyone gets a little intense because they don’t know my situation, I’ll go right to that person and say, “Hey, how you doing?” I’m not even going to focus on the fact that they’re in a chair, or they’re in a motorized wheelchair. Let’s focus on the fact that they want to work here just like we do. I think that I’m more compassionate than I could’ve ever expected that I would be, and it’s really because of what I’ve been through.
I think the goodness of people. People who we hadn’t seen for years were there to help. It made us feel so good, it was kind of like payback. And I’m hoping that when we get more financially founded—pay it forward—would like to continue.
Well, I think that the disability really changed his career and I think that it has kind of changed my career choice and my interests. And, I think that that really gave me a good direction for what I like to do and what I’m passionate about. My dad being the way he is has given me a direction in my life because I’ve always participated in and been curious to learn about the wheelchair, to ask about the disability. So, I have been trying to pursue physical therapy, so it has really shaped my life.
A huge benefit of becoming disabled has been that it's opened up the world for me. It has opened the world in a way I never anticipated. I've made new friends, I've made discoveries, I have traveled where I don't think I would have traveled much before. I have become knowledgeable about many things including disability and spinal cord injury. Being with people with disabilities, it's a different kind of world. I lived for many years in a very middle class, probably pretty sheltered, environment. And then poof, I became disabled, and I suddenly became exposed to a world of different cultures, different socioeconomic situations, poverty. I witnessed how people get through life every day, who are not handed the world. Suddenly, I was forced to examine my values and my priorities.
He talked about how his injury was a blessing—he turned it into a blessing. You know, he could have sat there, been depressed about it, you know, I might not have never seen him again. Because, you know, if he did get depressed, you know, I mean, that’s, that’s tough. You know, and for him to come out the way he did, that’s tough too. His disability could hold him back if he let it, but he doesn’t, and that’s what I mean by tough.
That I'm doing better now than when I was walking. I more confident now than when I was walking, I'm healthier now than when I was walking. In other words, I think it was for the best. Otherwise the way I was going with the streets and the gangs, I would've been dead or in jail. So I think it was a little slap in the face from God; "I had to put there so you could wake up." And I thank God for it every day.
Back at work, all of a sudden, some things weren't as important as other things. And I made a change in the way I handled people, and dealt with problems and separated out the inconsequential from what really needed to get done.
I broke my back two weeks before I graduated from undergraduate school. I had a job waiting for me in Aspen, Colorado as a surveyor and a land planner. I often tell people that if I had taken that job, I'd probably be a burned-out ski bum bartender in Aspen right now, as opposed to a professional with my own business, shared with partners, and living a very, very good life as that professional in Chicago, Illinois. The track would have been totally different, and the track with the spinal-cord injury, I am quite confident, was much better than the track if I hadn't received the spinal-cord injury.
I would say that probably the most unexpected change is knowing what the limits of someone is. Like, I feel like people don’t understand their potential, and I’m not even talking about people in wheelchairs, I’m talking about every day, every person walking down the street they don’t. I don’t know if they fully understand their potential, and so it was unexpected for me to go, “oh wow, potentially I can do this, potentially I can do this.” I know that there’s, if you push yourself enough there is so much you can do to make your life better. I mean that can go advice for anybody, just to know that your potential is so much more than you even think it could be.
The most unexpected change is that it actually happened. Especially with a car accident or something like that, you never see it coming. And I never saw myself getting injured, and it snuck up on me, and it blindsided me, but it changed my life so much for the better. Because it allowed me to slow down, it allowed me to begin to see and look at life for what it was. So, why me? And, I grew up enough to ask the question “why not?”
I think I would divide it up into two parts; the early unexpected change was, of course, the physical exertion that it took just to get through the day. Later in years, the changes realizing the things that I can do, and there’re so many that I don’t lack for things to do or to try. The Shepherd Center has a scuba diving program, and I was a scuba diver before my accident, so the challenge was to get back in the water and do it again. So, we have been on half a dozen scuba trips in Bonaire and Caymans. So, realizing those things is tremendous
It’s the way people respond to me. That’s the most unexpected change. I can ask for something and get it. Trust, people trust me. They trust a lying thief, a drug addict, and they know that if I say something, I mean every word.
At the time, you know, I was doing stuff that I shouldn't have been doing, you know, but at the same time, I was trying to straighten out my life. You know, I was trying to get out of the lifestyle, get enrolled in school. So, I think the, the disability actually made me hurry up in that process, you know, and get my stuff together quicker than I would have if, you know, I wouldn't have been shot.
It’s just the closeness between me and my family; it’s overwhelming sometimes, the support that comes in from everywhere, from all my extended family. It’s almost like the injury has just brought us so much closer together, I would say that’s the most unexpected change. I didn’t see it having such a positive effect in that way.
I think one of the greatest gifts I had was realizing how much I was loved and having that support. I think some people can go through life and never really know if they’re valued or not. When my injury happened, those were things that really came across to me. That’s something that I will always appreciate and hopefully I can give back in some way.
I know I didn’t think, and I don’t think anybody in my life thought that I would grow up to be like a disability rights activist. My family was hard working, removed a lot of barriers for me and my brothers, brought us a lot of support. I didn’t think I’d ever have to confront Presidents of the United States, or my own government or the private sector. I didn’t—it was disillusioning in the beginning because I began to realize that some people didn’t care, and I began to realize that some people won’t, they embrace the status quo because it benefited them. And so, I think those are some of those lessons I’ve learned like, “oh, everybody doesn’t care.” “Oh, everybody doesn’t want to change to make things better.” well, it is kind of an early rude awakening.
How normal our family is, and how we have a new kind of normal now that is just as comfortable as the old normal was. I don’t know how long it took to get there. It took a long time, but I couldn’t tell you just when it happened. But all the sudden, you wake up one day and you don’t have that awful feeling inside. You’re planning on what’s going to happen tomorrow, and looking forward to the future and thinking of other things. There’s a little bit of guilt in there because all of a sudden you’re not thinking of what has happened, you’re thinking of other things. And gradually letting go of that and just experiencing your new life was the best part, I guess.
Well, I'm still alive, and I'm happier than I was before. I mean, I might have had more fun when I was on my feet, but the fun that I was having came at a hefty price. And chances are, if I was still on my feet, I would probably be dead or in jail right now from the things that I used to do. So, as for the way my life changed, I have a job. I don't have a house, but I'm living ok in my apartment. You know, I don't have anybody yelling in my face, I don't have anyone shooting at me, I don't have, there's not much negativity in my life, and I'm happy about that.
When I met my partner, I knew he had kids, he told me right off the bat. And for a long time I thought, "Oh, I can be the cool girlfriend," and then, you know, that changed. You know, I've been essentially Nigel's mom for last four years, almost five years. So it's been a, you know, that's definitely the biggest unexpected thing that I ever thought would happen. I never thought I would do that.
I would say actually being more positive and appreciative of things, because the little things matter. And you don't realize that when you can walk around and everything is, like, peachy. And, I guess seeing humanity for actually being a good thing, because people are actually a lot nicer to me because I'm in a wheelchair, and that's not a bad thing because the world can be an unfriendly place sometimes.
I found a new career. I really enjoy being a mentor; I really enjoy sharing my experiences with other people with spinal cord injuries. It just gives me a feeling like you might not feel it today, but in a couple of years, you will feel so much better about the place that you're in, even on your wheels.
Probably just watching my legs wither down to almost nothing was really drastic and it's still happening today. I used to do construction and basketball and softball, and I just had these beautiful big legs, and I always just thought they'd always carry me through my life, and then to just have them taken away; it's just, you just have to deal with it. It can be hard at times for sure, but you find a way to get by it.
I think we've had to slow down because things are different. I think at one point, we thought it was going to go back up and be the same as it was before, but it hasn't ever gone back to the way we thought our normal was going to be. So, we've had to slow down, and a lot of that slowing down we don't even realize what we have slowed down, until we look around and maybe see how other families are doing certain things, and think, "wow, that was really quick how they were able to do that," but it just takes us a little longer.
The biggest change in my life, the thing that I didn’t expect, was after being in a wheelchair that I would actually really enjoy my life, that I would never expect all the opportunities that would come. The possibilities that were out there and that I was fortunate to have. But, it wasn’t just because it was given to me, but it’s a lot of hard work and determination doing it myself. But, they were unexpected; I never thought I’d be a fitness model and my face would be in movies, on T.V., all this stuff.
I think that in forming, making the decision to start caring about myself, and not just communicating the caring personality through loving other people cause that's what I did all the time; nobody could say I wasn't a loving person cause I gave so much love to so many people. But while I was doing that, I needed to do that in order to feel love for myself. Now I made a decision that I'm feeling it for myself, I am feeling joy in my little victories, I'm feeling joy in watching the smiles that I can put on someone's face who is struggling with this, you know, for the first time. It's not just about loving someone, it's reciprocal, it's a reciprocal thing. And I think I've learned that part of my giving nature, that I don't just t give, and I take. Taking is a very loving thing to do, not taking is very rejecting thing to do. I think I must have known that at some level philosophically, but I didn't know experientially, and now I know it as my own experience.
We feel like we have somebody who's going to be dependent upon us for a long—for the rest of our lives. My husband, I think he said it before she went into surgery, he said, "we're going to spend most of the rest of our lives taking care of her."
The way I was living back then, I was either looking probably to a cell, or probably six-feet-under. You know, that was my, that was basically what we were doing and what I was doing involving. And, now it's, it's about forget all that, it's about my future, my family's future. It's about, you know, hopefully someday owning that property and not paying no more rent. And, you know, from there, hopefully from there retirement, early.
I think I actually have more opportunities now. I know it sounds weird, but with having the accident, so many more opportunities have opened up for me. Like meeting people like you, this is a huge one. I never thought I’d be interviewed for stuff like this. And with school, the opportunities are so much more for me.
Well, it’s less freedom. And I was thinking recently like, you know, when you get older, your children sort of help you, but we’re—it’s the reverse now. We’re helping him, in a way, more than he would come and give us support being older and that’s the major thing. Thank goodness we’re still able to take care, do yard work, and housework and do other things. But it concerns me when we get to the point where we can’t, can’t help him.
I’ve been able to do just about everything that I used to be able to do. The interesting part is I actually play more sports than I used to, and I’m probably more fit than I was before. So when I found tennis, it was to me a positive change because I’m a lot more active than I used to be. And again, part of that is it makes my body feel a lot better to have the movement.
I think what’s different is I didn’t realize all the things that Andre could be involved with. I probably thought that his injury would limit him with a lot of things. I was completely wrong because, again, there are so many things that he’s able to be involved with that I was just unaware.
It would probably have to be my career because counseling was not on the radar; me becoming a minister was not on the radar. My main thing when I was in high school was to go to college in Tennessee, so I could volunteer and play football—Tennessee, volunteer, and play football. That was my only goal. So, once all that was shattered, and once I got better, and got better physically and mentally, that’s when like, “what can I do to give back? What can I do to help people not go through the process of being alone like I chose to be?” I’d rather try to help people skip this stage, and like receive help and so, I tried to find things that matched that mindset.
I actually miss being a queen. There is...Mike before the accident would do anything for me. Not to mention change my light bulb because I couldn't be bothered standing on a chair, but he absolutely would do anything I needed to get done. If I said I didn't feel like driving to work that day, he'd get up and drive me to work. Right now, I don't have that same luxury and I miss that.
The most unexpected change in some ways is that it, it didn't change. You know, in many ways, I very much have the life that I would have wanted prior to my injury. And, then you know, being able to achieve that. I maybe didn't, I don't know if I thought about it, but in some ways that's one of the most unexpected things and I think it'd be one of the most unexpected things that other people would guess that. I've traveled independently around the world; you know, these are all things that I wanted to achieve. And I feel very fortunate that I've been able to do, and go to far-flung places, and see things and do things, and be able to become a mom, and you know, work and have a home, and you know, it seems very mundane, it seems all very domestic in a way, but in some ways, that's it.
I’d say the most unexpected change in my life would have to be using my mind instead of my body. I’m a construction worker, I drill water wells, I worked with my body, not with my, mind. So, it’s been kind of hard to deal with not just being able to get up, and physically do it having to use my mind. I’ve been more of a worker than a thinker, you know, it’s kind of one of those things. Its sucks, but what can you do?
My son, my son. I never, even before I was in a wheelchair, I never thought I'd father a child, and now I have a four-year-old boy.