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Q&A: What's important for family and friends to understand?
Explaining Paralysis After a Spinal Cord Injury
It’s actually quite funny, with one of my friends he always asks, “so, how are your legs?” And with my level of injury, it’s not just my legs, it’s the whole hands and everything, and I don’t think he understands the permanence of a spinal cord injury. And he is always asking, and I know he means well, but I just wish he could understand that, well, for one, legs aren’t my number one priority. But yeah, there’s a lot more to it than just not being able to walk.
That I’m trying to be the person that I am, rather than the quad that they see. And so just talk with me, chat with me, treat me the same, and if I have needs, I will ask and if you feel uncomfortable taking care of whatever it is I’m talking about just say so. But it’s not something that these days I need to do very often, asking people for help with more than just picking something up off the floor or something like that. Treat me like they would normally have treated me, or better than they would’ve normally treated me. And but if I need something, I will ask.
I think it’s really important to understand that it’s hard to understand. There’s a lot that goes into it, it’s much more than what meets the eyes. Spinal cord injury, only part of it is not being able to feel or move. There’s not a part of your life that it doesn’t touch, so I guess I would just say to be understanding that it’s a process, it’s going to take time to heal. And if somebody needs a little bit more time to grieve, allow them to have that space to do that, and encourage them to move forward in a healthy way. But also, to give them space to deal with what’s happened because it is a hard thing.
I think they need to understand that it's another way of life. You have to, I guess, like, everyone can learn together, even the people with disability, is learning how their new life is working now with doing the same things but in a different way, taking more time to do each thing. So, I think it's a learning process, and I think it's something that the family and friends should do along with the people, the person who has the new disability.
Let them be who they are, let them be who they were. Don't presume that they need to be taken care of. Let them be the decision maker, empower them to be the decision maker.
I think the most important thing for families, friends, even new people you meet, is to be able to just ask “would you like or how may I help you?” “Would you like help, would you not like help?” I remember early on, my friends would go and play tennis, which I wasn’t able to play anymore, and I didn’t get an ask. And we were sitting at dinner one night about six months into being home, and I said, “you know, you all don’t ask me to come to the tennis courts.” “Well, you can’t play us.” I said, “I understand, but I like to lie, and tell stories and joke the same as I used to.” So, be inclusive, bring me along. And I don’t mind grabbing two people over the shoulders and being carried into a boat. I mean I want to be with you and it doesn’t matter that I am on wheels; it doesn’t matter that I can’t climb to the top of the tower on the boat. I still want to be on the boat. I still want to be in the dove fields shooting with you all hunting. I still want to tell lies about the biggest fish I caught. It didn’t change me.
That person is exactly the same as they used to be. I mean they just are and you—having a spinal cord injury, I don’t want to be treated any differently than anybody else does. I mean I want to talk and have a conversation just like everybody else does. One of my biggest pet peeves is when somebody asks me if I need help with something. Even though they’re doing it out of courtesy, I’d just rather ask for help. And the same thing when you might mess something up, you don’t want people to keep asking you if you’re okay. Like if you fall, “are you okay?” And you’re like, “look, if you tripped and you fell over, you don’t want people to be asking you an hour later, ‘are you okay?’ when you tripped and really took a fall there. Yeah, I’m embarrassed, I fell down, don’t ask me about it again.” But you know, I mean that’s just it, you just want to be treated the same as everyone else, you might need some gloves every now and then, you know the kind of people that take it easy on you. But I enjoy sitting, having a conversation with people, and if I have to look up, that’s the only thing that stinks, my neck starts to hurt, but other than that it’s fun.
I think it’s more the accessibility. People have no idea, it was a very eye-opener when we went to see my two brothers down there, and living in the house with Christopher, and seeing what was needed. You know, a big enough entrance, and to be able to turn around in the bathroom, and transfer, and getting up steps. The house was not handicap accessible. Thank God we had a nephew that had some muscle that helped pull up. At the same time, he wasn’t happy that he felt like he was kind of a burden to somebody. So, I guess it’s the big accessibility to getting around.
They definitely have to understand that it’s a good time for them to come together, and reevaluate where they are as a family. Hopefully it strengthens their family and brings everyone together, and hopefully they realize how precious life and time can be, and how it can be lost within seconds. So it’s really important for them, at that time, to get together and realize that, and take in what they do have and be grateful for what they have.
It’s not a sickness, you know, we do have fun. We just don’t sit at home and do nothing. We go out and have fun. You know, you don’t have to say, “oh well, so and so’s got a spinal cord injury, they’re not going to want to do this.” No, believe me we do. We do want to get out. We do want to go do these things. Don’t second guess us. Don’t second guess the person that was shot that was in a wheelchair. Believe me, they need you. Or the person was in a diving incident, or football incident or whatever, they need you. They need that companionship, they need that friendship. They don’t want to feel abandoned.
It’s not the same as before. You’ve got to make adjustments. You’ve got to make adjustments to get them into the house if it’s not handicap-accessible. He can’t do the same things that he was able to do before. His personality changed. I mean you know, he was always very competitive and all of a sudden, he didn’t have that drive to live and to compete and everything. And they have to understand that it’s life-changing. It’s not like having a cold and getting over it. This is going to be permanent, more than likely, not always, but to some degree there’s going to be something that wasn’t the same as before.
We get tired. We try to maintain a normal day, a normal life but it’s exhausting. I mean, I work eight hours-a-day. Very rarely, do I do anything during the week besides work. I usually come home, chill, go to bed and do it again—d o it again, do it again. So, you know, I’m just pooped by the end of the day. And gosh forbid I have to go anywhere, I mean, besides home. You know, I’ll be pooped tomorrow coming out here.
I don’t think I’ve really changed as a person, like I said, it’s just my perspective. I used to be six feet and now I’m four feet. So, that’s the only real difference with me. I try to keep everything simple, and everybody who knows me accepts me the way I am, and it’s just a different appearance more than anything else. It’s not going to change my personality or any of that.
I guess keeping life semi-normal. They were my constants before my injury, my friends and family, especially my husband; that kept me grounded, and kept some normalcy in my life. They were always there before, so they were still there afterwards. And I think anything relating to normalcy was a comfort, because “normal” wasn’t a word that I would ever think I could use again to describe my life. Having something normal, anything normal, I craved for.
A lot of people could misunderstand that everybody's injury isn't the same because they're in a wheelchair. Somebody just walk up to you with a story out the blue saying how they knew somebody a football player, whatever, and just say, "yeah, they ended up walking again." You really don't want to hear that because you really know how the injury is. Once this happens to you in real life, it's stationary, it's not going anywhere.
To provide space to the person that has the injury, because, at least personally, I was a fairly private person. You will completely lose the ability to just get up and walk away and go into another room, especially if you're being cared for—you're being bathed, you're being cathed or you're doing your bowel program, whatever it is. It's like you no longer have, you no longer have that private component to your life because it's just kind of been eliminated, and you just sometimes need some breathing room.
I think that everyone is so focused on wanting to teach the child, or teach me in this case, you know, what was happening, and how I should be feeling, and how I should be thinking. Versus, understanding, you know what, I'm a teenager, and when you're a teenager, things are all about you. And for someone just to say, "you know what, I love you, and the way I'm going to show you that is not to tell you, and to say you can talk to me and do all this, but just to take you and do things I know you love to do, and spend time with you," because those are the things you like to do. And even though your mom's had an accident, you still want to do all those things. I felt very misunderstood about how I felt about it. Because I think what, because I think that the expectation that a teenager or child really understands and is and is mature enough to have the skills to cope with it. I felt the stress of that. I think people need to understand, they don't have those skills. And so, to try to take someone, and sit them down and have a rational conversation about why they should feel one way or another, it really wasn't, it's not helpful.
It’s really important for me to have some independence. I’ve been coddled for a year and a half now, and I’m in the process—I just passed the driving exam, if you will, and I’m in the process of getting a vehicle. I’m in the process of getting my own accessible place, I need my independence back. I lived here in Georgia for three years prior by myself, and it’s just, I need that sense of independence again.
Just understand that this is a learning experience. And, everything is going to change, because the person in the wheelchair is going to get better at some thing. And the person in the wheelchair is probably at some point, they're not going to need some of the things that they used to need, and they're going to end up needing new things. So everything is going to...it evolves, everything is going to change. It's going to be constantly changing, but for the better.
It’s come full circle. It’s very important for anybody that’s close to you in this situation to get counseling. My sons had counseling, my parents went to counseling, some of my friends went to counseling. It’s not just you going through this injury—it’s a lot, there’re ripple effects, there're a lot more hands in the chain.
That hardest part was starting like six months after I came home, the following year, so I guess a half a year out to the next year and a half. Because the first six months, everything was so new and I didn’t know which things were going to stay challenging. I think it wasn’t six months or a year later that I was like, “Oh yeah, this is going to be hard.” And that’s an interesting point because I think a lot of people are there for you right after you get hurt, and everyone’s all ready to help you and your family out, and then six months or a year later, it’s kind of old news for them. But for me, that’s when I was really starting to to internalize what was really going on. So, that was the point some people were kind of like, “Oh, we don’t necessarily have to be as worried.” But, that was when it started getting harder for me
I don’t think they necessarily have to understand the details of what’s going on, but sometimes I get a lot of, “Well, all you had to do was ask for help, and we would have helped you.” But you, I don’t know when we were going through this what I needed. I don’t always know, or didn’t always know. If someone had said to me, “What can I do for you?” I didn’t know the answer to that at the time. And as much as you want to tell somebody, “Well, come vacuum my house,” you know what I mean?—you just don’t do it, vacuuming the house is the last thing on my mind at the time. But, just having people offer was amazing, but the people who actually just did. You know, my neighbors all got together and rotated dinners three days-a-week for us for six months. You know, that was huge. I mean, we asked them to stop when he came home after three months, they said, “No, we’re just going to keep going with it.” That in itself, because three meals, you know, three times a week probably went further than three meals when you have people donating this. It was just a huge, huge help to—and I didn’t do anything, I mean the neighbors took care of it. You know what I mean?—I didn’t have to worry about that stuff. You know, the grocery shopping—I had friends who went and picked up groceries, and dropped them off, that kind of stuff. Just not having to say what you need, or people would get upset too if you couldn’t tell them what to do, or couldn’t tell them when they could do it. It was just, if it worked out, that was the best for me anyway. I’m sure there’s other people who are scheduled, and want to know when someone’s taking care of things. But for me it was just people stepping up without me, having to say anything.
I think it’s important for them to understand that the person with the injury isn’t weak or incapable of things. I think that they need to be encouraged to live their life just as they were before their injury, and not dwell on the injury as a point of difference.
Not to treat us like we're fragile, not to try to do too much for us. Let us try to do it ourselves, don't push yourself on the person with the disability unless they ask for help, then you help. Because a lot people have the tendency, they see a wheelchair, say, "can help you, can I do this, can I do that." We appreciate it, but sometimes we just want to be left alone and treated like anybody else.
A lot of people think of hospitals, and think of wheelchairs, and doctors and things like that and they freak out. And, they try to avoid situations because it's so sad, and I mean it's sad, but if you're there for the person, then it helps a lot. And, I guess, that just because they're sitting in a wheelchair doesn't mean that they're any different at all, so just treat them the same.