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Q&A: What's gotten harder over time?
Adjustment Problems After a Spinal Cord Injury
Adapting to a spinal cord injury can be a life-long process with secondary conditions manifesting years after injury.
With the average lifetime cost of a person injured at age 25 being $2.5 million, many worry about managing their finances and medical expenses.
Others are concerned about premature aging and maintaining a healthy waistline with limited mobility. Some struggle with asking for help and feeling like a burden to others – and mourn the loss of independence.
In the series of videos below, people share their personal struggles with spinal cord injury.
Movement, aching joints, weakened muscles. So, I have gone from a transition of being up on a crutch and long legged brace, to riding a scooter for a decade, to in the last year moving to a power chair, hand controls, all to keep from falling with old and aging shoulders and aging muscles. And you know life physically gets tougher, but it gets tougher for everybody. I just think that some of us with the injuries get there a little quicker, it’s a little bit more brutal of a journey sometimes. Even though I’ve got some friends who have had pretty brutal injuries that aren’t spinal injury.
My body is less flexible. It's gotten, it's gotten harder for me to transfer, to shower by myself, I'm able to, but it's gotten more difficult. Those things, I'm not sure I ever took them for granted, but I think I felt that I had reached a plateau that was going to continue. And now, I'm beginning to see the other side of that little mountain, so it's getting more difficult. And I am not, perhaps, looking forward to those last years; because I don't know what they will hold.
I think the thing that has gotten the hardest is finding that balance between independence and dependence because after my injury I was so dependent. I was dependent on everybody to do everything for me, and as time has gone I’m getting a little bit more of my independence back. And sometimes finding that balance between my loved ones, and we kind of like go at it with one another like, “okay I got it, get away from me.” So, sometimes finding that balance is a little difficult.
Being away from each other, like separation. Like, I have a hard time being away from him. And we’re contemplating going back to school, and going back to work and stuff. The anxiety of going back to work is terrifying.
Every year our life changes, no matter what, whether there’s an injury or no injury. And I think that having a child has strongly changed the way things have been. Although he’s become more self-sufficient with himself, we’ve brought a third person into this wheel. So, making that fit and making that be easy from a day-to-day perspective has been the challenge right now.
I would say the realization that my son's not going to live his full life. He's not going to live, which, you know—my step dad died when he was 49 from a massive heart attack, and I can accept that because it wasn't an accident. This, however, came from an accident and I so grateful for having him; he could have died on the scene. And, I'm very grateful for having him, but I'm watching him deteriorate and it's so hard. When the accident first happened, all his muscles, and all of his bones and joints were where they were supposed to be. As time goes on, you don't use those muscles, your bones and your joints start to come out of place, nothing you can do about it. Your spine starts to curve—I tried, and tried and tried all the exercises in the world: hanging him upside down, curving his back the opposite way. He didn't have to have a spine (surgery) right away, but he had to have it four years later. I was able to hold off for those four years, but ultimately he still needed it. No matter what I do, my son is going to deteriorate. Look at Christopher Reeve, he died from a pressure ulcer; he had all the nursing care in the world. What's going to be is going to be, and that's the hardest thing. My son, he might die tomorrow, he might live another 10-20 years, but ultimately he's not going to live to be what he could have lived to be—89 years old. And, I 'm going to see him deteriorate, I will live longer than him more than likely. I will see his life getting worse and him going through more pain. I have to be strong enough for that, that's going to be so hard.
It's Mother Nature, that my parents are getting of age, and with time, they're only going to get older. So, you know, I would like to put a lot less work on them; I would like to see about, you know, hopefully retire them from me. You know, still staying in touch, but, you know, for them not having to do all this they do for me. Because, you know, like I said, with time, you know, it's only going to get heavier for them, and I'm already seeing that, so that's, that's what gets to me.
For me is now that you're running into the issues of aging with a disability, and although I'm 40, I consider myself still young, but I always say that 40 is the new 20 or new 30. But, I have 40 years of living with a disability, so I'm dealing now with some shoulder issues, a lot more aches and pains and so forth. Not that I ever want to slow down but, you know, it's just the fact of every day, the livelihood of living with a disability, not having the full use of my legs, it relies on my upper body, the muscles that are working to get me through and, you know, it's taken it' toll.
A friend of mine just is getting ready to go on a trip to Australia, backpacking on the unbeaten path. I, the year before my injury, I had taken a one-month backpacking trip to England, France, Spain, Norway, Austria, Germany, Italy. And to go to these places, you can go to these little hostels, these off-the-beaten-path type places, but the fact of learning that things are inaccessible in a chair is the biggest thing. So, travel has been very limited; I love to travel that’s why I joined the military, to see the world. Not to be able to see the world as much the way I want to see it, the way the old Darwin saw it, that’s become more difficult.
The gradual physical ailments, the secondary conditions —the sores, the broken bones, the, you know, those kinds of things that other people don't experience at an age—I mean I'm 33, and you know, certain, a lot of things have happened that I didn't, you know, and it only gets worse as you get older, which that's not. I know that the aging process happens for everyone, to have it start happening so young in life, is hard to deal with.
I'm just not; I've never been very patient. This, you know what, that's something you really have to learn if you're going to be disabled because, you know, things are, you know what, things are not going to go your way. There's going to be doorways you can't get in, there's going to places you can't go in, there's going to be restaurants you can't go in, there's a lot of things that, there's going to be a lot obstacles in your life, in the future. And, you know, it's something you just have to, something you just have to roll with. You know, and you say, "alright, we can't go here, let's go there," you know. That's, it's just part of your life, your life is changed, doesn't mean it has to be bad, it's just different, that's all.
The fact that now that I’m independent when I do need the help, I can’t get it. It’s like a struggle for anybody just to stop for two seconds to help. Mainly when I need help, is like when I, there’s something in the space that I can’t get to, which is my whole house, it’s not handicap at all. Or like if I just need help moving something, basically little stuff like that is just, the fact that they have to stop doing what they’re doing to help sometimes feels like it’s going to kill them. That’s the way they act.
Oh me, my body is starting to give out. You know, I had a hip replacement, and my knees are icky, and that sort of scares me because I want to be there for him in case, you know, he needs anything. And as I'm aging I'm realizing that my body is starting to say, "no, no, no, you know, you are not as able as you used to be." And that troubles me.
The relationship has suffered, there's no question. We don't feel like we're dating, we feel like working; it's a lot of work. And, the special times are fewer and farther between because of having to go to doctors' appointments or therapy appointments, or this week alone it was an outpatient surgery, and there's less enjoying in terms of a social dating and much more about managing a spinal-cord injury.
Well, my biggest is, you know, they kept saying over the years, “The cure is right around the corner.” You know, you keep hoping and hoping. I mean, they’ve made progress, that’s absolutely wonderful, but he won’t see that. It’s just been—he’s atrophied, and he’s just too far gone with it physically. So, that’s my biggest disappointment. I’d just like to, maybe even one thing even—his hands or you know—one small thing.
I don’t know that it’s gotten harder because he’s made such progress. And once he got the drive to live again, he came back, and he said he wanted to come back here to Atlanta to live. And he wanted to start playing rugby and stuff. He wanted to be closer to the Shepherd Center, so we let him come. And cutting those ties was awfully hard of saying “we’re not there to protect you again.” So, I don’t know that the hardest part was watching him make some mistakes after his injury and after going through the Shepherd Center and stuff. Some of the emotional mistakes and some of the—you know, the Shepherd Center tells you that they’re going to try this stuff and they’re going to get involved in this stuff. And you say, “not my son.” And then it does happen. And you have to use some tough love sometimes and say, “that’s it. You keep this right up, this is what’s going to happen.” You know, I cried the whole way back to Memphis one time. But it’s not hard any more, I mean he’s got his goals set. He works here at the Shepherd Center. He plays wheelchair rugby because he was always competitive. He plays for the USA team. He races wheelchairs. He bass fishes on the Paralyzed Veterans of America Tour. He lives in a condo by himself. He drives. He does everything we do basically. He doesn’t walk. So, I look at it—he can live his life the way he wants to, it looks like. And that’s what I want for him.
I’m just getting older, so you know I haven’t noticed a real decline in my ability to do things. But I can see where that’s starting to sort of go, just from the natural progression of age. And so, being aware and conscious of that, and being a little more diligent about maintaining, and maintenance of my joints and my shoulders. And, not putting myself in a situation that could have some long lasting deteriorative effects. That’s probably the biggest thing.
Over time I have noticed that my body doesn’t burn off calories as easily. And three babies later, and the love of food later, I’ve gained a lot of weight. And that has been a struggle with me is to try to keep the weight off. I’ve done everything from counting calories to CrossFit trying to get the weight off and it’s not budging, so that’s difficult. Like I want my 17-year-old body back, who doesn’t, but that’s hard.
Getting into vehicles, getting stairs are my nemesis. I mean just daily routines are a little harder, I mean cooking in the kitchen is a little harder than it used to be. But again, you just adapt and make the decision that “hey, I want to do this.” I’m quicker than I used to be because I can roll, but yeah, I mean as far as easy, I don’t know that there’s much that’s easier. Definitely everything is a little bit more strenuous—having to lift your chair every time you get in the car; you just don’t feel like going to the grocery store at that time. But again it’s minor, you got to put it in perspective and move on.
I think it’s harder to stay well the older I get. You know, the UTI’s and all those kinds of things, they take their toll. It takes me longer to get ready, to get dressed in the morning, and all those kinds of things become harder. It’s an old injury.
Managing, or helping my son manage those sad moments is a little bit tricky. Because the sad moments now are a little bit different than they were originally. Initially, it was coming to grips with the condition. Now, it’s everyone else is moving on with their lives, but I’m still kind of in the same place. It’s a different type of juggling act because what I said to him at 17, you can’t really say at 23. So, that’s what’s gotten harder, to help him manage his emotions and those sad moments. They don’t come often, but when they do come, it’s pretty hard to always have the right answer.
Dealing with my stomach but t I’m finally trying to take care of that. It’s taken me a long time dealing with it, to take care of it, so hopefully, I will hopefully get this problem figured out that I have. I had to go see a doctor, but nobody wants to go see a gastroenterologist or whatever. It’s like no matter what I eat, whether it be fast food or spicy, it’s like I can’t not eat. But sometimes that seems easier than to have an issue. So, I hate dealing with my stomach, that’s my biggest issue. And, I hate that it took me so long to get a van. I mean, I just got a van and that was like the best thing I ever did. Of course, I wish I would’ve gotten a new van, not a used van, because you buy somebody else’s problem. But, it’s so nice not having to break my chair down a zillion times a day getting in and out of a vehicle.
Some of the physical things, and by physical I mean it’s— I’m 65 years-old, and even 65 year-old able-bodied person, things just get more difficult with the years. But they are good years, you know, so that would be it.
No, I wouldn’t say things are harder. They’re places I’d want to go that I may not be able to go to. You know, I guess the only thing that’s gotten harder is trying to go to certain places. Like a colonial city, you’re trying to push on cobble stones and it really isn’t too fun.
Waiting for the cure. Sometimes I still look at him, and I'll give him I hug, and I'll be holding him, and I just, I just want to use my mother-miracle magic, and just make it happen. You know, just wish that, you know, because after you give birth, you feel so blessed with bring this beautiful, perfect, life out. And I just wish there was this mother-magic, you know, that I could work, and change everything.
The longer I have my disability, the more comfortable I become, and the more a part of my identity it is. But, then there's still always going to be people who ask stupid questions and like say, ignorant things or stare, and it just gets really old. So, I guess it hasn't really gotten harder, but I'm like sick of it.
Now, I’m so busy living that I forgot I’m, like, neglecting my health. Because there’s nothing wrong with me now, but, you know, there’s things I need to take care of, so my range of motion, I need to work on some stretching in my lower extremities. I’m always on the constant watch for sores, of pressure sores. I never had one—I got to find some wood right now—never had one, thank God. I’ve been so blessed, and because I’ve seen the damages those things have done. But, you know, I’m going to be 40-years-old in December, and I know my body’s changing. I can’t recuperate after sports like I used to. I can’t play, you know, four games of softball in one weekend, and then two games on Sunday, and travel for 12 hours, and then be at work on Monday morning, you know, like all happy because I just had a great tournament. You know, age, you know, just the evolution. Men, human, just changing the body. But the disability part, you know sometimes I wonder, you know, what I’ve lost. I can’t sit back and say, you know, “I’m never going to do, I’m never going to run, I’m never, that’s over.” And there’s still, “I’m never going to run,” that gets hard. But, there’s so many things that keep me occupied, I don’t care.
The only thing that's gotten harder is like as my body starts to fall apart a little bit, and it just sort of started happening. Like I have really bad tennis elbow in both elbows and stuff like that. So, that's been recently the most frustrating to think, "oh, I’ve been in a chair for almost 19 years and I’ll be in one for a lot more than 19 years, hopefully.” But like I can't already be falling apart. So, that's been the hardest, but, you know, you do PT and keep on keeping on.
Well with age, some things get harder, I mean, the day-to-day things get harder a little bit. I mean, being in a wheelchair so long, you start to miss being able to walk and look eye-to-eye with somebody. I mean it's getting harder for me to accept not being able to look eye-to-eye with somebody.
Not being able to get out of the house whenever I want to, that's a very big limit for me. Because, just, I love doing a lot of outdoor activities all the time and so that has, like, been the big issue for me, yes.
I think what’s gotten harder is understanding everything that’s affected by my injury and kind of looking into the future. One thing that I’m nervous about is having a family, and having relationships, and dating, things like that. I know that’s going to be hard and that’s something I haven’t thought about before, and I hadn’t understood how this injury might affect that. And, I’m starting to think about that more. I think, I’ve started to think more about my career and I want to have a family and a career. I have no idea how I’m going to juggle having a family, having a career and taking care of myself. It makes it harder to look into the future because before I didn’t completely understand how that was going to affect everything.
Letting her be really independent is almost what's harder for me. She out more, she's out on her own more, that's what's gotten harder. When I know that she's at home, I feel better, but, you know, she comes to work, she goes out so, and I'm just waiting for her to call and say, "I'm home," you know.
The hardest thing is me having to call and ask somebody for help for something that I can’t do. I’ll do it, but it might take me three hours, where it might take a friend 15 minutes. That’s the hardest thing is to ask for help.
The biggest thing for me is hockey. Before, that was pretty much, I loved the sport, and now, I can’t play it any more just because I don’t have the hand function really to get out there. So, I haven’t been out there on the ice, but it doesn’t bother me because there are so many more things out there that can occupy my time and make me happy as well.
I guess focusing on my body because that was my main goal of moving here. But I always said, “I’d never give up,” but I won’t say I gave up, but I see that I slacked off tremendously from trying to walk, and trying to work out with my legs, and stuff. Because with school and with work, it takes so much of my time that it’s hard for me to just get on the standing frame when I want to daily. It’s hard for me to—I have a friend hat help me on, just stand up on the walker. So, those different things, like and now, it’s even harder for me to even work out period. I have to like make time, 30 minutes, or an hour here and there to try to do it. So, that’s probably the hardest adjustment.