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Q&A: What's your main concern about the future?
Common Obstacles After a Spinal Cord Injury
Q: What’s your main concern about the future?
Many people living with paralysis report having health and financial concerns about their future. People find ways to make new financial arrangements and make provisions for dealing with new health problems that will develop as they age. Others worry about losing independence as they age. Some wonder if their disability will hamper their ability to develop meaningful relationships or the ability to start a family.
We asked 100 men and women to share their main concerns about the future. The best answers are in the videos below.
My health and my shoulders. Only because there are so many complications associated with living with spinal cord injury, I’d like to think I’ve avoided most of them thus far. As of recently, I ran into a couple of snags with my health that I had not encountered before. I assume that’s probably only going to happen more frequently as I keep getting older. But, I broke my leg last November, I’ve had a urinary tract infection that I’ve had a hard time shaking this summer, and that really affects the whole rest of your life—how you function, your energy level. Things are a lot harder. But seeing how things will get more difficult as I age is not something I’m looking forward to.
I mean aging with a spinal cord injury. I have several friends that are upwards of 60 and 70, and I see of the issues they have, arthritis setting in, and things of that nature and shoulders blowing out. Playing sports and having bad shoulders is difficult, so I mean it’s definitely a concern as you age. I try to combat that with technology. I ended up buying a smartdrive on the second hand, which for going to Clemson football games, where it’s very hilly, it saves so much energy. It would be nice if those things were more available. But getting around our yard to clean up after my dog, I bought a powerchair for 150 dollars, so I don’t have to push through the yard to go pickup dog waste and things of that nature. So, I do what I can to protect my shoulders when I can, and just try to fit because aging is a little scary.
I'm worried about long-term health for him. He has no problems currently. He's healthy, he's fine—he has had some problems with pressure sores in the past. He's married, he has twin boys that are three-and-a-half. And, I'm just worried that, I want him to live as long as of a life and raise his children as anyone else would have the opportunity to do, and I'm afraid that there's something that might come up in the future that's going to limit him from having those same experiences.
It was not until past year that, that I really realized that she's getting older. You know, the hearing's been going for a while, and but, earlier this year when she had her car accident and I got a phone call from the police and came downtown, there were two things that happened: one was I realized she's older, and she's not going to be able to live alone for that much longer, it's not safe for her. And, we've always talked about "let's move you," but those are now becoming real, real issues. And the responsibility that I have, you know, being the daughter that lives here, and, and is, you know, that wanted to try to pick up the pieces. We all do, I mean all three of us do, but that's been, that's been hard about her getting older. And it's hard watching her, she never says, well she would if we talked about, she'd say, "you know, I hate getting older and I'm sad about it, and they're things that I'm sad about." But, it's hard to watch. She was so strong and has lived alone for such a long time that she didn't depend on us at all. And now that she's getting older, and she's' starting to do that, and it's hard for her to watch us have to do that, you know what I mean? I think it's somewhat humiliating even though we love to do it, and would do any thing, but now we're realizing, you know what, we can't wait for her to ask, we just need to do it. And in the past, we've always, you know, we just sort of stayed back. And so that's changing—it's hard.
My main concern about Stefany's future would be that my parents won't be there—soon or one day, and she'll need me, as she needs my mom right now. My main concern would be that I have to be there for Stefany one day as my mom is right now, and that scares me a little bit.
I guess I don't look at it like, "Oh no what is he not going to be able to do." I look at it like it' almost kind of fun to imagine how is going to tackle this or that, because I just think he's going to figure out a way, you know, I think he'll figure out a way to do whatever he sets his heart to.
This angel came along that he married—unbelievably good, wakes up in the morning with a smile, always laughing, she’s fantastic—and she takes great care of Johnny. So, I think that’s the highlight of the whole thing. After 25 years, he’s kind of…you always think to yourself, “What’s going to happen when I’m gone?” So I now what’s going to happen, so I’m good.
Dating is a big one. Raising my boys and not making mistakes there because I’m a single parent now. So, yeah, that’s a big responsibility.
I want her to have as full a life as she would have had if she hadn't become disabled. I think she deserves that because, in fact, she's still the same person she was when she was able-bodied.
I think it’s tough, it’s a hard life, but I think that everyone has a hard life. It expresses itself differently. I think for him, he’s in a wheelchair. He’s going to have issues with disability, he’s going to have issues with work, and he’s going to get discriminated against. That’s life. We all get discriminated against in one way. We all have some image issues expressed or not. In his case, they’re all there. But, he has a good inner-core, my son has an awful lot of people cheering for him, and he’s in the right place, so I’m good with that. I’m not fundamentally concerned.
I have a lot of concerns about being a woman in a wheelchair. I am very concerned about my shoulders, my back, just my body wearing out and what that looks like. Even just pushing, like am I going to have to go from a manual wheelchair to power wheelchair? How is my body going to handle sitting for years, and years, and years and what does that look like? I’m nervous, I’m scared of my health. I’m very interested in people that have made it many more years than me, and what that looks like, and how I can get there. And that’s kind of why I struggle with my weight because I know that’s an added negative towards my future. And so, I just really worry. I worry that something goes wrong and I won’t feel it, like if something was wrong and I didn’t know. I just have a lot of concerns about my health for the future.
My main concern for the future is just like my shoulders and elbows falling apart. It’s, my biggest fear is to not be independent at some point. That freaks me out. But, you know, I’m doing all I can to put it off as long as you can. So, can’t do more than that.
I think as a young woman, you always want you daughter to have a relationship. I want her education, that’s what she wants. I want her happiness, number one, to pursued whatever it be. And for her hopefully to be in a marriage someday, and to have a child, someone that can help with her care, at least direct her care, and love her.
My main concern, I will probably say, children as it relates to age, like because now my focus is on school, and work. But I already have in my mind when I finish school next year, I want to start mostly trying to look for a wife, thinking if I can start my own family. But I want to do that early and not too late where my body may start going down, or I may lose some strength or something like that. Like I have my nephew every summer, and he loves to come here and play basketball. So, I’m playing basketball with him, and can play with him. But I don’t get want to, my concern is, I don’t want to get to that age where I’m too old to be able to go out there, and actually compete with him, and make it fun and entertaining. And so that’s the only thing I’m just kind of concerned about.
We're blessed that the Worker's Comp has been adequate, and it's more than adequate for Jim's situation. But entertainment and boredom, I worry about that. I hope that, you know, we continue to stimulate each other and enjoy each other's company.
I guess if I had a main concern, and she would disagree with this and probably be angry at me for saying this, I remain concerned socially with how people will relate to her. And, you know, because it's so not fair that the first thing people see when they see her is they really see the chair, they don't see her. And she has to, I think, be persistent in forming relationships before, it takes a while before people forget about the chair. And she has some great friends, she's made some great friends at college. But it's always a lot of extra work on her part that it shouldn't. So I just hope for her that moving forward she'll be able to maintain relationships. Neither really she or her brother, have done much in the way of dating, and I would love to see her have some dating relationships, and eventually I would love to see her get married.
I have a fear that because he’s considered an incomplete quad—he’s walking—and they’ve said that in the future, there’s a chance that he could relapse and go back to his chair, you know be put back in the wheelchair. I just have a fear that maybe his mental state, his psychological state could falter. That’s just my fear that maybe his health, you know as he gets older because they told us his health could get worse as a sixty-year-old man with quadriplegia. Your health is going to be worse than your average 60-year-old man. Even though he is only 35 now, he’s only got one lung that functions. You know, he walks, but 30 years down the line, you know that could be a totally different story. He could be back in his wheelchair. It just scares me.
That she would be able to take care of herself completely, independently on her own, you know, without me intervening. To pay her bills, to get to work, to make her appointments, to be able to do all of that without me. Because there may be one day that maybe won't be there, so she really needs to know how to do all those things.
My main concern is to make sure that, if I’m to die that my wife can still live the way she’s been living, without undue stress.
That he’s taken care of, you know, we won’t be here always, that’s my biggest concern. My daughter’s wonderful, and her husband is wonderful, my grandchildren are wonderful with him, but it’s not their job. I don’t want them to feel burdened, you know? And, that’s my biggest concern.
It's about, you know, as far as fear, or stress, or worrying about stuff, I just I have to turn that over to a higher power. I mean, I have a mantra, you know, I pray, I listen, I do my best and I let go let God. And that's kind of just my—it works for me, it works for me.
Sometimes I’m scared for the future. Because as he ages and I age, sometimes I worry about things that he may need over time. I hope that our health withstands as long as possible, because I do get worried about the future and his care over time.
I hope that I can stay healthy enough to take care of her in the manner that she needs to be taken care of, because if that were to ever change—I'll tell you a little fast story, ok. The fast story is, is that we both sat that at the breakfast table this morning saying, "God, what happens if I die in my sleep?" Because in the morning, before the alarm will go off, I feel this arm gently stroking mine. And I said, "What are you doing that for?" And she said, "Just wanted to see if you were alive." And it's a fear that I have and it's a fear that she has. She wants to go before me, and I definitely want to make sure that I stay around long enough to take care of her.
It’s just health in general— pressure sores, back pain, you know, that type of thing. I consider myself very lucky because I’ve got a great nurse that looks over every inch of me every day, or every other day; my wife does the same thing, so I’ve got real good care there. But, that’s kind of my biggest fear, is just having a medical breakdown, and instead of living in a house in New York going fishing, I’m stuck in some hospital bed. That’s my real concern, that’s my fear.
The challenges I see in the future, and this will always be a worry, will I at some point be a burden on my family? Will I be useful when my children go on and have their children? Will I be able to help with their challenges as my parents and in-laws were able to help with ours? So, the worry that you want to be as helpful as possible and as influential as you can as your family is growing.
I'm kind of worried that people will treat her differently. I know she's strong, but people still, you know, there's a lot of different people out there, you know, that will probably treat her differently just because she's in a wheelchair. I hope that she has a regular life, really, because, I mean, because I know she's a regular girl, and I know she's going, she's going to succeed. Like, she's worked hard all through, all through school; she's going to go to graduate school, possibly. And I know she's going to do well. She gets along with everybody, a lot of people like her; a lot of people know her. So, I really, I really think she's going to do well.
My main concern about her future is that would she be able to live independently on her own, with or without my help. I think that would be my major goal. And, right now with my help, she's living pretty independently. And in the future, I would say with a caregiver, I think she could live quite independently by herself. And, that would be my goal, and I think that's what we're working toward.
That he'll stay healthy for a long, long time, that he'll, his longevity will be good, and he'll be able to see his children grow up. And I, I really think that's going to happen because medicine is just changing leaps and bounds.
I’m hoping that he’ll actually be able to get a job, and that’s a worry because of all the things that are added into it that people don’t normally think about when you’re getting a job. And the fact that my husband and I are obviously getting a little older, so you’re not as physically able to do certain things, so you do that. I think finances are a big worry, just having to continue to have that money to supplement and really to take care of him.