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Q&A: Do you live independently?
Independent Living After a Spinal Cord Injury
In 2020, 44.3% of new spinal cord injury patients were single at the time of their injury, and many feared not being able to live independently again and having to move in with family or nursing homes for care.
People find ways to be as independent as possible depending on their level of injury. People with paraplegia can make adaptations to their homes to accommodate activities of daily life. People living with quadriplegia usually require the daily assistance of caregiver to live independently, which may be a family or a hired professional.
We asked 100 men and women living with paralysis about their living situations. Click on a video below to hear the best answers.
It’s interesting, when I first came home, I couldn't live in the house that I lived in before because all the rooms were upstairs. So, I sold my house, bought my house and got discharged on the same day. So, it was a very, very big day for me. And during that time, my parents lived in LA, and they actually retired, and they were going to come and take care of their invalid daughter. While this goes on for a month, and they were driving me bad crazy, you know, because they’re thinking I am in high school, that's like, “You have your coffee now, you need to stretch now.” It got to a point where I felt like everything was out of my hands sort of speak, you know? For instance, my daughter, you know, she’s eight, my son is six at the time. "Oh, I want cookie for breakfast, mom." My mom would give him a cookie because she felt bad for him. Oh, my daughter wanted like sushi roll with just nothing in it, you know, with a little bit of soy sauce in it. My mom would make that in the morning for her, so she can have something that she loved for breakfast. And, it was just like everything was slipping, and those were the things that I hated because I lost the essence of who I was within that confines of the home, yeah. Within one month, I realized sink or swim, I have to do something differently. So, I actually sent my parents home and I said, you know, “I will call you if I need you, but I need to get something back." And there was a lot of push back from my family members thinking, "Why don't you move back to LA?" And my thought is, "Why? Am I going to get my legs when I go to LA?" Do you know what I am saying? So, for me, I think it behooved me to stay to have some regularity and schedule for my children because I couldn't take that away because of the injury too.
Oh yeah, actually for almost 10 years I lived on my own. I had an apartment on my own in Austin (Texas) and then I moved to California and lived on my own. I owned a house in Berkeley, it was my own. I just recently, in the last three years, have moved in with my partner and his now 18-year-old son.
He can now go in the bathroom, roll up to the shower, take his whole shower—very independent. He also drives; he has his license, he has hand controls on his car. So, he’s pretty much independent. I think when I’m working, when I went back to work, that was the best thing for him because mom is not home to do things, and he learned to do them.
I do. I’m married, and we actually just moved to a brand new house so that has been an adventure, but yeah, I’ve learned how to do just about anything I could do before. Still working on a few things like painting walls, but I’ve even done that with a standing frame, you just learn different adaptive ways to do things. There’s still some things I can’t do, and you still got to ask for help but I mean the majority of things, you can figure out ways to successfully do them.
Well now I live alone, I do live directly across the street from my parents, but I live alone. And, I have a PA that comes seven-days-a-week for like two hours a day. She basically does housework, I'm pretty good with dressing, and cooking and all that stuff on my own
I do live on my own; I lived on my own before my accident. I lived with a girlfriend, and now I live by myself. So that’s huge—living by myself, that’s awesome because I still can live by myself. At first, I didn’t know that it was even going to be feasible. I thought I was going to have to move back home with my parents. I didn’t, I wanted to fight through it, and I’m glad I did.
I have an apartment, one bedroom apartment and it’s great to have your own one bedroom apartment. Because, like I said, I’m very independent, I like doing everything on my own, I’ve been doing it my whole life, even in childhood. And so from the wreck, to the part when I learned how to be independent again was a struggle for me, because I’m not used to receiving help, or not welcoming help as much. So, yes, I have my one bedroom apartment, I guess I drive, I go to work. So, it’s is really not that many complications as in the home because everything is wheelchair accessible . And then I work out and stuff, so my upper body strength is pretty good. So, transferring, or lifting things, or reaching for things is not a problem because I have long arms so they come in handy.
I live independently. I, of course, am married and have three kids at home, who are all nine. So, I’ve got any number of hands and help. But I function a 100 percent exclusive; I travel a great deal around the country for work and work in a construction site. So, my ability to sort of just operate independent is essential to what I’ve done. And, it’s a constant learning process much through YouTube, and word of mouth and talking to people. And there’s so many things that you don’t know that you can do until you actually see somebody else do it, and then you realize, “oh well, he can do it, why can’t I do it?” And then you go about the business of figuring out how to make it work for you.
I just want to live on my own. Feel what it, it's like to live on your own, even though you're in the wheelchair. I mean, I lived by myself before, so if I could, if I did it then, why can't I do it now? And, I know I can do it.
He lives with us, he’s back in college. He did go back to work with accommodations, so he works part time at Trader Joe’s, just four hours a week. We got him a hand-adapted car. He now drives; I would say he’s independent.
I have a roommate and I have caregivers from an agency that come by in the morning. And other than that, my roommate basically helps me with preparing food, helping me into bed at night.
I did live independently. So, a year before I got married, I was in college, and I told my mom that I was moving out and I was going to get an apartment on my own. She freaked out. And I did it, and it was like one of the best decisions I’d ever made. I got a dog, and I took care of myself, and I did student teaching at the time, and so I drove to all my classes and my job of student teaching. But yeah, I did, I lived on my own for about a year and then I got married.
I moved to Atlanta in 2010. All my family is in Ohio, came down for an internship that turned into a job. And then about three years ago, I bought a house. I bought a really crappy foreclosure because I knew I’d have to renovate the bathrooms and kitchen in whatever I bought. And redid the entire thing and live completely independently.
I do live independently. I just graduated from college, I went to Stanford. And this past year, I lived in a house. It was University housing, but it was an accessible bathroom and bedroom on the first floor. I do all my own dressing, and transferring, and bathing and all that. I had someone come in once a week to help me do my laundry and clean my room, which is kind of just a time issue more than anything. Other than that, I don’t really need any help. I did and I do everything myself. I do all my own bowel and bladder program, my own transfers in and out of the shower chair, and dressing and everything. If I need help with something little, I can ask my friends. I had some friends living in the house, and that was easy, but it was usually nothing more than, “Can you get stuff off the shelf or the floor,” maybe like that. So, I drive, I have a wheelchair adaptive minivan with hand controls. So, it’s not necessarily the slickest car but it gets me around. Driving has been great; it gives me a lot more freedom. I have had my car out in school in California, but especially living in the suburbs and having to drive almost everywhere, it’s really nice.
My mom is still here, I think we are codependent on each other. She doesn’t want to leave, I feel like I need to take care of her now, so she is still here. Like I said, she moved to Georgia, so we currently do live together, but it is so much better now.
After my injury, I moved out of my parents' house and lived just by myself in an apartment. I couldn't have been more happier there either, because I was doing completely everything on my own. You know, cooking, cleaning, everything was completely me. I even had a dog to take care of and stuff; it was just great. The feeling of independence, living on my own was wonderful, I loved it.
I live independently. I got remarried, I live in a ranch style home. Actually, we lost our home in a fire little over a year ago. And so, even though the house was accessible then, it’s more accessible now because we’ve rebuilt it. I have an elevator—not many people can say that “I have an elevator.” I have a front porch I can go out on, I couldn’t go out on my front porch before. My house is completely ADA compliant. It’s awesome, I mean that was a blessing in disguise.
My wife was my primary caregiver in the beginning, both through the hospital and at home when I needed it. Shortly after I got home, I was definitely independent to do my bladder routine. My bowel routine, I wasn’t quite as independent on, it took me a few months to get more independent on that. But now when it comes to like personal care, I don’t really have her help me with anything. If I want somebody to check my skin, I’m not very good at it because it’s behind me, so I have her look at that because it just makes more sense to have someone up close and there’s someone there. If I lived on my own, I would certainly find a way to do that. But if she’s going to go out of town for the weekend or for the week or something like that, then it’s not intolerable for me to stay at home by myself. But I also have someone, like we didn’t have a caregiver or anything but I’m not home for the week by myself. I don’t have to do, keep my apartment completely clean, or make the bed or anything. I can do it, but I also work a fulltime job. So, the people that I know that do manage to do that, although it’s amazing, I’m like, “you don’t have a job to do, okay? Talk to me when you have to do both things.” So, yeah, I mean I can walk the dog, cook meals, you know all that stuff, whatever it takes.
I pretty much do everything alone now. I cook by myself, showers, programs, I do it all by myself now. Only time I ask for help really is when I can’t get into the laundry room, so many clothes in the way.
I do live independently now. I live in actually the Lincoln Park area, which is close to everything. I love my location. It’s a two flat apartment, it has an elevator, it’s all, it’s very accessible, it has kitchen counters that are raised, where I can roll underneath to get underneath the sink. It also has a range stove. There’s also light switches at levels to where you can reach those. So, I created my home as I would have created it if I was on, still on my feet. Having the furniture, having the really nice things, you know, to make it comfortable, so that I, even though I was in my wheelchair, I still had a nice sofa, and the nice furniture, you know, all those things that would give me that thought of still being able-bodied. I live on my own, and I enjoy it, it’s a great experience, it really is. A little fearful at times because I’m by myself, but yet I have caregivers that do come in and out of my home.
So, I scaled back, I did live independently for a while and then I went back home with my mother. Because like I went back to grad school, I went back to school, so grad school and I just decided to save money while I was in grad school. And right now, I’m just rebuilding my finances so that I can move back out independently.
Yes and no. I live in the same house I lived in when I got hurt. I've gotten a housemate, who lives upstairs in my master suite, my beautiful master suite. But she's there for when I need certain things, and to help run the household and she does a great job with that. And in case of emergency, if there was a fire in the house I couldn't get out of bed. But for the day-to-day things, I operate somewhat independently. But every morning I have caregivers that come and help me for three hours or so, sometimes longer than that, to help me get showered, and dressed and take care of my other needs. And so, I'm as independent as you can expect for a C3 quad 10 years out.
I do everything 100 percent on my own. I do all kinds of stuff, I mean you wouldn’t believe the stuff that I do, people don’t believe the stuff that I can do. You got to be—it’s in your brain, you know, mind over matter. I hunt, I fish, I carry my kids fishing, I got a, I own a farm. I don’t do like tractor work and stuff, but I go hunting, I get food plots put in, just anything. I’ve got an excavator, Polaris Ranger, I use that a lot. I got a side by side, track code. I do everything, just like I used to, a little lower and a little slower.
I’m actually with family now. I live post-accident with my mother and father, I moved back in after my injury. it was going to be, I guess I could say back to convenience, it would be very convenient for me to move back in with them. And then there were some things physically I needed some help and assistance with. Since then, my father has passed, and now it’s just me and my mother. And there were some things that you know I could help support her with, where she could help support me with as well. So, at the moment her and I are still living together, and the house is accessible.