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Q&A: How did family members respond to the news?
Family Responses After a Spinal Cord Injury
Q: How did family members respond to the news?
A spinal cord injury affects the whole family; at first, most people report feeling shock or are in denial. Then, many feel compelled to action, rushing to the hospital to help care for their newly injured family member, while others withdraw or avoid contact, distracting themselves with work, school or household chores.
We asked 100 men and women how their families responded to the news of their injuries. In the videos below, individuals shared how they initially dealt with the injury.
We were all, my children did not come to the hospital. I did not want them in the environment because they were so young. My mom was there, his mom was there. We all took it very hard, of course, it was very painful. I mean, it was devastating. Our children took it—it was their dad, their hero. But we also realized that Josh is the strongest person we know. He is a fighter.
I grew up kind of on the wild side, I guess. You know, I’ve always had fun, and going fast, and rode motorcycles and go-karts. And my mom has had this reoccurring dream that I was in a terrible accident. She’s never been able to put it into words to me to tell me because she just cries when she starts talking about this dream. When she got the call that I’d been in this accident, she knew that nightmare had come true. So, it broke her heart. You know, what can I say? I’m her baby of three children even though I was 33 at the time of my injury. I was still her baby. And all she wanted to do was nurture, and love me and pray that this was somehow a temporary situation.
Close to my geographic area, everybody was more in a state of shock, but because during that time too, my father had gone into the hospital as well. So, it was a double whammy if you will. But, further away from the home, like as folks in the Philippines, there were just more in like a state of shock, a state of denial. Like, “this couldn’t happen to him, he’s such a good boy,” and all that stuff. So you had the spectrum from state of shock, to state of denial. The further away you were, it was more denial. The further closer you were to the person—me—it was more a state of shock, emotional shock if you will.
Well, they were all here and it’s a big family. I’ve got five brothers and sisters, and they’re all in Cincinnati or Michigan. So, they were all here by the next morning, the waiting room at the Piedmont hospital down the street here had about 80 or 100 people in the waiting room by the next day—and they made a bunch of them leave, “you’re not doing any good here.” But my family all came, most of my family was, well, all of my family is very supportive bar none, but a few of them really stood up and helped out even way beyond my expectations. But my mom stayed for 10 months, yeah.
They were devastated but they were really in kind of a crisis mode, you know. “How do we help her by paying her bills while she is in the hospital?” Taking care of my boys, arranging different things legally, getting custody of me so they can make decisions, medical decisions for me. So, they were really in, like I said, a crisis mode. I think things didn’t settle in until many weeks later.
My wife, even though we had been married less than two years, she vowed that this would not affect our marriage in such a way that she would leave or anything like that. She moved in with her parents immediately with our three-month-old daughter, so they were very supportive. And, my brothers took over any concerns about the house, and so forth. So everybody rallied around immediately.
The good news, and it’s kind of perverse, is that teenagers, they live in a world of one. I don’t mean that at all negatively, but that really worked to everyone’s advantage. Because, we were able to give just enough information for them to understand that we were concerned. I think as a couple, my husband and I also made a conscious decision to say, “Alright, we have one child on the brink, but we have two that are alive, we need to pay attention to them as well.” So that was very much in our therapists, to say, “We have to pay attention to these guys because we don’t want them to feel like they have suffered a terrible injury as well.”
With shock. They wanted to come to the hospital. All my other children were in college, they offered to drop out of school. I wasn’t quite too sure what they could’ve done to help.
They were all pretty much nervous wreck; they were more worried about it than I was. My mom, she was, her whole thing was “I don’t know what to do.” That’s all she kept saying, :I don’t know what to do.” Then my dad was like, “you got to step up and take care of her,” because they are split up, so. But yeah, it is pretty hard.
Family was there, the response was support, encouragement, empowerment, that was one of them. And then what can I say about mom, because mom is a registered nurse, so it was a lot of support there as well. And she was really focused on my complete total health side of it. Dad was the coach, so dad was more and more focused on the rehab side of it. But the support from the family was I could say probably one of the most important things.
My family had very mixed reactions. Initially, we all shared and joined in just how devastated and shocking it was. Swimming—I was injured in a diving accident on my high school swim team—swimming is regarded as a safe sport. This was nothing we’d ever expected—an injury to happen to me. My dad and my sisters really stepped up to the plate and joined in the mission that they didn’t want this injury to prevent me from anything that I would’ve done otherwise. My mom had a more difficult time with it. She really experienced a lot of guilt and anger about my injury
I think about my family all the time. My parents were in their senior citizens meeting, and one of my brothers had to go get them to tell them that I was shot. That fact that I have four brothers and two of them were cops, I was probably not the one that they expected to be getting shot. Again, I think about my mom, what she had to hear, and my parents rushing to the hospital to see what had happened. But, I also think once I woke up, and as I continued to go through rehab, that I realized real quickly that I kind of set the tone for them. If I showed that this was okay, I can deal with this, and I’m going to still live life, and move on, and smile and be the same guy, just sitting down. That helped them accept it.
So with my family, we’re religious-based, so for us it was a bunch of faith, a bunch of hope , and I have a really great support system from them. They were just always there, I mean my mom didn’t leave my bed for the first two months of my injury. And my family, we live in Atlanta, so they were always around here at Shepherd and everything. And they were super supportive, and we just prayed, and just hoped for the best, and we were just going to stick it out, and take the days as they came and just hope.
I never saw them cry or, “oh my goodness, what’s next?” around me. They were always strong, which I think all three of them are, or all four counting dad, everybody is, but they never showed any emotion around me at that time that I remember. It was all about, “hey, let’s get Aric better, let’s listen to the doctor, see what we have to do and move forward.” Even after the surgeries and rehab it was always “what are we doing next?” “How can we help you?” Because they were in school—my accident happened two days before school, so they had life to get on with. Mom stayed with me, my brother, sister, and dad went back to whatever was normal at the time anyway. But I saw them on the weekends at the rehab center. I was in the hospital from August 20th to November 4th, but I would see them a lot even though it was a 100, 150-mile ride for them to come to the hospital. They never, at that point anyway, didn’t show any, I don’t want to say didn’t show emotion, it wasn’t a pity party because I don’t think any of us knew what was in store.
You know at first everybody was terribly upset that, you know, nobody knew the shape I was in until I was out of surgery. So, they didn’t know if I was going to be braindead or anything. And you know, the whole community, not just my family, the entire community took me in, and supported me, and started contacting me, my wife and my family. And then my family immediately come in supportive, kind of over supportive at sometimes, you know, give you some space. But they came in and they were awesome.
My family was, of course, very concerned, and, when I had my accident, and very supportive. My husband took time off of from work and was, in fact he didn't go to work for a month or more, he was at the hospital with me all the time. My parents were there every day, my children had different reactions. My two older children—my son of course was concerned, he kind of couldn't understand how I could deal with it. He was, because he saw me in worst stages of the hospital, and he'd say, "Mom, you've got so much going on, so many bells and whistles, and monitors, and things going in and tubes going in and out of your body, how do you do it?" And my response was, "Well, you know, you're not old enough for me to leave you, to leave you, I still need to be here to see you grow up." My daughter, my next one down, my daughter was wonderful. She left college and came home, not permanently but every chance that she could, and she kind of became my mother, and took very good care of me. My youngest daughter was 14 at the time, and I think she didn't know what had hit her, she was pretty devastated. She and I were very close, and I think she felt that she's had lost a mother. And as a 14-year-old, you know a young teenager, what she thinking about?—me, me, me, and, right? And she said things like, "mom, who's, who's going to go to parent-teacher conferences? You can't. " You know and, "mom who's going to..." what was her, "who's going to help me with my homework?"—and, "who's going to go out to lunch with my girlfriends' mothers?" And I had to answer, I mean these, and oh, "who's going to take me shopping for clothes?" So, I had to answer each of those questions, to what I hoped would be her satisfaction, but to reassure her that I was still her mother.
My husband, my ex-husband said it was the hardest thing he had to do was call my mom because my parents were not local. And so, there was, they had always kind of had a hard time with each other. So, he said the hardest phone call he had to make was to tell my mom that I was in an accident, but I was okay. But I really wanted her, of course, I wanted my mom. My mom and my dad got there immediately. My dad lived in Colorado, and my sister and my step mom. So, I was very fortunate. I had lot of family and friends’ support. Because a lot of people don’t have that, and they don’t do well as I did.
Devastation, you know, very, very upset. I think it was more challenging more on my family and friends than it was on me. Since I had a focus and I had the support coming in, where they had to be the supporters, and weren’t getting the support that I was receiving. Their struggle, especially in the beginning, was much more challenging than mine.
They were devastated. It was horrible news. My children didn’t know a whole lot about what was going on. I was in a spot where I didn’t want them to see me the way I was. You know so, it took a while for me to even to ask my wife to bring my kids in to see me. They honestly, they asked my wife “is dad even alive? Are you just telling me he’s alive or is he really alive? Because we can’t talk to him, we can’t see him.” So finally, I ended up having to let them come in and see me the way I was. It was hard on them, but they were honestly relieved that I was still alive. I promised them “I’m going to get better.” I kept telling the therapists, and the doctors and the nurses that “I’m going to walk again.” And, they would just give me the smile and nod, “yeah, just keep trying. You’re going to get, you’ll get as far as you can get.”
My side of family, I’ll split this, there’s my in laws and then there’s my side. So, my side of the family has a different way of coping with things and they kind of joke about it. I wouldn’t say they don’t take it seriously, but they have like a positive way of looking at it. They might joke about it, they might laugh about it and stuff. So, my side of the family was kind of, you know it has its advantages and its drawback. Because sometimes you’re like, “why are you guys messing around about this? This is serious.” But sometimes when you’re not feeling good, or it feels comfortable to me because people feel comfortable about it. In Sarah’s family they get pretty upset and they mourn sadly in a way I would say. So, they were sad initially. But most of our friends and family, you know my mom would say this is that people would be all nervous to see me right after I got hurt. Or even in rehab, they’d be like, “well, what’s he like?” And they’re like, “he’s the same person, he just sits down,” which is a perfect way to describe anybody in a chair. They still talk like normal, they still make jokes, they still think about the same things, they just sit down. So, that’s how we see it.
Initially, I’m sure they were like any family would be, they were kind of freaked out, but again in the beginning, I don’t really know. When I came, when I was cognizant of what was going on, they were all just kind of supporting me, not really telling me the downside of what had happened to me, just being there, being in my room. My son flew in, I have two sons that do not live here in Atlanta, I woke up my children were here, my mom was here. My godparents, who informed my mom what was going on because when it happened, they were not allowed to disclose any information to my mom. So, my mom is in Ohio, and she gets that call, and they’re just saying, “your daughter is in the hospital.” So, luckily my godparents, who live here, were able to kind of put her in the loop as to what was going on.
Our whole family was tight, nobody walked away from it. They all joined in and helped out, whatever they could. Let Joanie and I would go away; my brother-in-law would come over and stay, you know, my sister-in-law. They would stay and take care of Johnny, just so that we could get away for a couple of days, you know. Because that first two-three years is tough, and then after that it got easier, started getting easier.
My son, he kind of just went ballistic, I mean, because he's a nurse and so he knew the extent of her injuries. I think that my daughter was just kind of in denial because she would sit and read a book like nothing was going on. And my husband, I think he was in denial also. He kind of hit the bottle a little bit because just, I guess, to forget about what actually happened and how serious the accident was. So it was a lot of different and mixed feelings and emotions about what was really going on, you know, during this time.
We were at a family gathering on a beach when it happened. Her brother, her twin brother was the one who called 911. So we were, for better or for worse, all right there at the moment that it happened. And I think, I know my boys really didn't get it at the beginning. And we got to the hospital, she had the surgery, and then it started to sink in that this was serious and that she may not get better. She had a twin brother and he was beside himself, you know, "she has to get better, she just has to get better," you know, he was 15. And then she had a younger brother who was 13 and I don't think he really quite, no actually he was 12, so he was young. My husband and I were sort of, shell-shocked, and I think that's a pretty common reaction in that circumstance. It takes a little while for everything to start to sink in.
My daughter, who was I think three years old, four years old at the time, and she— no fear or anything. And I had an external fixator on, my leg was out straight in a big thing, I had a turtle shell on, I was a pretty difficult patient. She had no fear whatsoever, she just crawled right up, and got right in bed next to me, and that just made me cry. My other son was really too young to really know what was going on. And the oldest, he was eight, and it hit him the hardest, because we played basketball together, we’d gone camping, fishing, things like that. And he thought that, “Dad with your broken legs, how are we going to do all that?” that was his first thing. And I said, “I’ll still be able to shoot some baskets with you, and all that, and throw footballs.” So we kind of got that agreement, but I just think he was just concerned a lot; he was really scared about me, what was going to happen.
I will never forget my mom’s face when she jumped in the back of the truck, it was—my mom is very strong, and I had to give the police officers my phone number. She got there, and she jumped in the back of the truck and I just saw fear, like I had never seen that on my mom’s face. And now as a parent, I completely understand why she would have that look on her face. And after that, I didn’t see it anymore. She was so strong, she was just a rock and I never felt like I was a burden, I never felt like it was difficult for them. And now, I look back and behind the scenes I’m like, “oh my goodness, they did so much for me just as parents.”
When my daughters found out we were actually—my daughters are 7 and 11—and we were actually in the grocery store, and we had been trying to get a hold of Kelly, we couldn’t find him. And my little one—we were getting ready to go to a neighborhood party—my little one, at seven, was kind of like, “Am I going to miss the party?” You know, so she ended up going, obviously with neighbors. But my older one, you know, kind of an old soul, she ran home, she grabbed jackets, she grabbed water bottles. It was a little strange actually how she coped with it, she actually really seemed to understand what was happening, where we were going to be, we were going to be at the hospital for awhile.
I mean, they were destroyed. So my mom, of course, was there 24/7 at the hospital, like, never left my side. My girlfriend at the time, Faith, who’s now my wife, was like, stuck to me like glue. And I was just of course like, “Oh my gosh, my life’s over as far as, you know— my girlfriend’s not going to want to be with me.” But they really just rallied, and were like, all they wanted to do was reassure me that they were going to be there for me to get better. I even remember my dad who came down, he lived up in northern California, and he was there, and I was just like, “Look, you know, I’m really messed up. Can you guys just get over not getting along?”—my mom and my dad. And, you know, they all just kind of said, “Yeah, we’ll put aside all our petty stuff, and just really be there to try to help you.” So I had super great family support.
A lot of the questions were “why isn’t he walking?” “Why isn’t his left foot moving?” Things just weren’t working the way they were supposed to, and we just didn’t really know because the nature of the surgery was it could come back. And so, I think we all held on to that kind of hope that it would come back, and so I think we were all kind of in denial to begin with.
My mom kicked into, "I've got to take care of her." You know, she took over the quintessential mom role, you know told the doctors, "this will be done, this won't be done." I mean she just, you know, she'd never even—none of us had ever been in a hospital before, so no serious injuries but she went into this almost automatic, "I've got to take charge, I've got to do this," which is not her normal role. My dad, on the other hand, just kind of shut down, and he wouldn't really talk to anybody for a long time and it was very difficult for him. And I think my brother, I only have one sibling, my brother I think it was such a shock to him. I think in some respects, 15 years later he's still in a little bit of denial. Because we don't live close to each other, and I think it's easier for him just to think that I'm still, even though he knows and sees me every once in a while, he still doesn't really accept that this is my life now
I guess you could probably say they were devastated. My wife, she didn’t know what to do. My mother was furious with me, she came into the emergency room, or the ICU, and was screaming and hollering at me about riding a motorcycle, “and I should have never been riding motorcycles.” My wife’s father was very supportive for her. He was around, her sister was around.
My family really had a difficult time especially my parents. Me being an immigrant personally and my parents being an immigrant to this country, I think their understanding of disability was very different than the reality of disability. You know, because everybody brings what they know of what disability is into the fold, you know, when they think about their family member being one. And so, I think even 19-years-post injury, my parents still have a very difficult time. So, when I’m on the phone with them, you know, my dad is still very emotional. But, my children, I think, them being young, and me asserting myself most of the time, I probably faked it in the beginning. I needed to let them know that there’s security and comfort with me. But, I think for my brothers and sisters, I think it was very difficult for them to see someone as active as I was in the state that I was especially at the, you know, forefront of the injury. Again, because they haven't had any dealings with people with spinal cord injury or people with disabilities personally, you know. So, and I think, again, it was the fear of the unknown for everyone.
There were a lot of tears, a lot of sadness. My son was the go-to guy in the family. He did everything: he mowed the lawn, got the groceries, and helped me fix the cars. And, the family pretty much just crumbled at the thought of him losing his ability to walk.
My family members, I mean, my brothers, my mom, it was almost a dream for them. Not a dream, but it didn’t feel real. And especially my little brother, it took a long time for him to even want to be around me because it’s hard to accept. And I couldn’t imagine if roles were reversed.
They were pretty upset, they were real upset, not mad upset, just sad. They were scared about my reaction; they were worried how I was going to take it. Because, I’ve always been more independent, so they were afraid that with all this, that it might be a blow to my pride, I guess. So, they’ve been my rock, they’re pretty good.
It was very hard for me because I've always been very strong. Unfortunately, they looked to me still in this moment, and so everyone was looking to me on how to handle this, "what do we do?" And that eventually became a pretty emotional burden for me.
Having two boys, they were in, I think, denial at first. Her dad, I was by myself a lot, and he was trying to maintain the household at the time. Non-communication I guess, just supporting each other the best we could. But at that time, I didn’t know how anybody was dealing with it because I wasn’t sure how I was even in my own. I think you’re just in a state of shock the first month or so of really not knowing. It’s hard for me to look back at that now.
I was told that my mother like dropped to her knees and was in shock when they came in and said, you know, “she is paralyzed and it's permanent,” and all of that. And my step grandmom said “we need to call an ambulance for you and take you to a hospital, or you need to stand up.” And she stood up, and came in and we kept on keeping on because that's what we do. But, I am very lucky that I have great parents, who made it a priority to make me independent. They joke now that they made me too independent, but it beats the alternative.
My dad’s response through those early days was just anger, he was angry. My mom was—I think at first she tried to avoid, like I felt bad, I felt like she didn’t want to look at me, or come around a whole lot. She didn’t stay in my room a lot at first. She got better, and my sister just became very protective. Ultimately everybody became very protective and wanted to you know—and it’s funny because even when I got home, it was very “oh, don’t reach to do anything, no!” You know, like everybody is thinking that I’m this china doll, and I still have to tell them now “I am not a china doll.”
Our oldest son at that point was seven years old, and he has always been really wonderful through all of this stuff, but at one point, we did find a little book that he had written about, "If my brother dies, I am going to cry, and cry and cry." And it was, you know, it was sad and it was hard to know what to do because at that point, they weren't allowing anyone to come in and see Daniel. So, his brothers hadn't heard or hadn't seen him. And so, it had probably been about a week and a half that he had been on the ventilator at that time, so when we mentioned that to the nurses, just kind of came up in conversation, and they made it a point to be able get the brothers be able to come up and see Daniel, and see that he was going to be okay, and that things were okay at that point.
My family was devastated because everybody heard that I was dead, like they didn’t know the rest of the details. I don’t think they knew I was gone, so my family was devastated. And my mom, she went through the worst because the hospital kept calling her from like two, three in the morning to like four in the morning. And most of the time telling her “we just lost your son,” and then they’ll call her back 30 minutes later, “we just revived your son.” So, she was going through an emotional rollercoaster, and had to deal with “okay, is he dead or is he alive?” In the end, the second to the last time they called it was like, “well, he’s gone this time, we couldn’t revive him. You have to arrange for the funeral, and things like that and that nature. “And she said she was going through the motions, and 30 minutes later, they called like, “we don’t know how he keeps coming back but we finally got him stable. You all can be able to come visit him whenever you’re ready to come.”
Shocked, just shocked. I don’t think anybody could actually believe that it was happening. Yeah, it’s not just anything we expected, or could have expected and we all just couldn’t fathom it.
Tragedy, just like, I mean if nothing else, I guess I would equate it to a death in the family. I have always been a person that people sort of look to be a guy that could do anything. My own philosophy was that I would probably live forever, even though I wasn’t 16 anymore. But I mean, I just from the standpoint of being able to get into a situation and be able to figure out or work through it regardless of what that might have been. And so, all of a sudden being disabled, or crippled or just not having the physical ability to do certain things, I think, was probably very disheartening for my family. Them not knowing what life could or would be like. All you see is “he can’t do certain things, so what in the world is he going to do?”