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Q&A: What personal support was most helpful to you?
Family Responses After a Spinal Cord Injury
Q: What personal support was most helpful to you?
The first days after injury are extremely stressful for the patient and family. Major support from family members is what keeps most people going. Faith and helpful friends also play a role. Case managers, nurses and doctors are also very important sources of support during the first days in the hospital.
We asked 100 men and women living with spinal cord injuries to tell us about the personal support that was most helpful to them. The videos below contain their answers.
I think the biggest support for me was my mom and my dad. Because, at the time, Andre and I lived together in a condo, and I just moved out of my condo because it was a second floor condo, and I said, “We’re obviously not coming back here.” I moved in with my parents temporarily, and every night, coming home from the hospital, my mom and dad were there to support me, and to listen to me cry, or listen to me unload on them. Because you don’t realize, as the caregiver or family member that’s there every day, you want to be strong for the person in the hospital. You don’t want them to understand or see you upset. So, having someone to go home and unload that on was my escape. To just sit and talk with my dad, and talk to my mom, and tell them what happened that day.
My parents naturally were right by my side, along with my wife. You know, I have a daughter; she was only 6-months-old at the time. So, my sister was, you know, everybody was there, everybody was around me. The police department was around me, I had fabulous nursing people around me.
The support of my husband and my mother with me every day, keeping sprits up, and just being there were huge. And just the support of friends and family, it seemed like both my husband’s side and my family’s side, there was just unwavering support. I’m always amazed by in-laws. I don’t know if I had a son who was married 8 months, how I would’ve reacted to that, you know, what advice I would’ve given my own child. And they just seemed really rock-solid in their support and moving forward as a family.
I had enormous support from friends, a very close circle of friends, that were always there and said, "no matter we'll be there for you," which was very helpful because I went back to school three months after I my accident. And that was hard to have to leave my family. The second thing which has been a constant through out everything is my mom. Just, to know, instead of trying to hold me tighter, which I know is very understandable and natural thing to do after you've experienced something like that, she never did that. And I don't, I still to this day don't know why or how she was able to do that. But the fact that she's let make my own mistakes and stood by, always there, always there to support or fall back on her if I needed it, but never smothered to me to the point of, "no you can't do that because I want to protect you," which I think is an incredibly brave thing to do.
Probably just watching my parents and step-parents learn what they needed to do as I was learning what I needed to do. Right, you just lead by example and “okay, this is what we are learning, this is our new normal.”
Interviewer: So, for example?
For example, I remember when my mom and step-mom were being taught how to cath me, my step-mom picked it up like that, and my mom, like, had issues with it. And that was really stressful for her. And just seeing her like get aggravated, but then come back, and obviously figure out how to do it and take care of it. It's good to see that, you know, everybody has issues, and it takes a couple times and it takes practice.
I just did the "mom: autopilot, and I just, he looked to me and I looked to him, and I just was going to do everything I could to making him—be the medical watch dog for him, which I did have to be in the hospital, and get him through it. He was my strength.
I had one friend that would come up to the hospital, bring me lunch. Managed to get me a cell phone, that I could whistle or something, make a noise to activate it, and dial phone calls and stuff like that using my voice. Helped me go home for visits, transfer me into a car, helped me and my wife to get me around. That was probably the biggest one.
As we were discovering the things that I would have to do—fixing the house, insurance, how much the bills were and everything— all I did was feel like a burden. And a part of me just said, "Boy, it probably would have been easier if I had not make it through the surgery, then you get a good life insurance policy, you can pay off bills." My 17 year old granddaughter said, "It would be disastrous without you mama." So it was that encouragement from all that love that I realized it would be very cruel to the people I love so much to not want to live. It's one thing to sort of take it on yourself, but that's selfish, very selfish, and I really had a moral obligation to fight for the people who would fighting for me and loving me so much.
I think it was important for me knowing the fact that I knew family and friends really cared about me. I think that tragedy is always a time when people surprise you both good and bad. And thankfully, more good surprises to find out how much you mean to people by them rallying around me, and the support that people gave by the cards, letters, phone calls, and eventually cookies, flowers came in.
As far as personal support, this being a whole new situation, once we got out of the hospital and over to the rehab unit, that's where I started to find some support. Being a vet, I have a very foul mouth. Okay, I mean I came through Vietnam not because I'm a nice guy. When I got into the rehab unit, things happened that didn't make me happy I mean I voiced them, I was a, I was a pit bull. I would latch on and I would not let go until you told me what I needed to hear—not what I wanted to hear, but what I needed to hear. Consequently, our case manager was, to me, the biggest help. After her was the nurses.
I think my closest family. It was mom, my dad, my stepsister, my stepmom and my in-laws because, I mean, they came and saw me daily.
Oh, we had a wonderful support group. My sister was, lives just a few blocks away from us, and my sister was there. We had a wonderful church support group that came around us, that just brought us meals, took our other kids. We had a wonderful support group, our friends were just incredible, and, you know, what I had to learn during that time is being able to receive. I'm somebody who loves to give, so I had to learn to be able to receive, because I couldn't, I couldn't do, I couldn't do what I'd like to do or I couldn't do what my "normal" was, but I had to receive from other people. And so that was something I had to learn along this whole trail, even over these nine years
It was probably my in-laws. My parents were gone and I was injured, so I needed to be close to Magee, the hospital, and they had an apartment in center city. And so I just spent my time at night in their apartment. I had to sleep in a chair because I couldn’t lay down then—I had a bunch of broken ribs and some other things. It was their support. I know that they paced me with spending time with Vicky, so I wasn’t there every minute of every day. It gave me time for myself, because I needed to some healing as well.
I think my entire family’s personal support, and the realization that they were camping at my bedside in shifts for months at a time. And knowing that they were cheerleading, and they wanted me better and that they loved me no matter how little or how much I got back. They loved me for who I was and who I still was. And I knew from the beginning my family was all in, and I think that’s crucial because this injury is as much about what happens to the family as it is about what happens to the individual. And sometimes maybe more impactful.
I found personal support from a very kind nurse, who would read me stories. I found support from a race-car driver, who had someone else also in critical care. Someone played a song for me over the radio, and it was called, “Eye of the Tiger,” by Survivor, and that’s was almost the initial point of where I felt where my strength would come from. And, that has become, you know, a critical point, became a critical point of where I would never give up, and I had that will to survive, so like the song. And, then I eventually met the group later on it my life. But, it was all the little things—the family that I made in the hospital, the people that were also there in critical care, who eventually found out that I was there by myself—then at some point, I didn’t feel like I was alone.
I prayed a lot, and it helped. Whether you’re a religious person or not, it helps to talk to somebody, and you talk to Him up stairs, and that helped me a lot. And Johnny, that he was getting along, and that helped too, we talked a lot. We had a lot of time on our hands, you know.
Personally, my church and my immediate family were the most helpful. And I must say that my employer at the time was also extremely helpful. They really rallied around and supported us at the hospital, and just wanted to see what we needed, and had discussions about where was the best place for him to get care. Just a lot of support from places I didn’t expect.
Oh, my wife. I don’t even know how to describe the work and dedication she’s put in for me. She took classes, and she never left my side except to go to those classes, or when she was, she just had to, she went home every now and then to check on the kids. My mother in-law was helping watch the kids and some other family. So, my wife was hardly ever gone from me. And it was while I was in the hospital, I had a counselor, Mike McNulty, who was here at Shepherd’s Center, who was unbelievable. I mean, without pretty much those two people, I don’t know where I would be. I have other family and friends that really stuck by me and still stick by me today that I just couldn’t live without. I wouldn’t be where I’m at now, without their support and them pushing me. I have friends that, as bad as it sounds, make fun of me to push, to motivate me. You know, it’s really—I have fun with my injury, as bad as that sounds, and that is my motivation.
The biggest thing was seeing my friends come in during the first six weeks of inpatient rehabilitation. Seeing them, and talking about it with them, and them letting me know that I’m still the same person, or they still see me as the same person as a whole.
My friends were really great. They came and laid in my bed with me, came to rehab and learned all the physical therapy and learned my range of motion, learned transferring, and brought me presents and just were there for me. And, they called all the time, you know, persisted in calling even when I didn't want to talk, which was a lot of the time; but then when I did, they were there. They were good.
The most personal support that was valuable to me was my mom, my father, my brother and my Uncle Tom. Because, some of the relatives told my mom it’s better off to put me in a home to not deal with me. And, I lost a lot of friends. So it was the support too of those four that were closest, as well as my sisters and my other brothers, but other than that, I lost many people that were close to me.
Absolutely without a doubt the most important support that I had was my church. I had just started attending a church, so I didn’t know that people supported people like that. And they did, they surrounded my family and brought meals. They brought in construction workers and made a whole apartment for me, so I could—my house was not accessible. They helped put in an elevator, so I could go up and have dinner with my family. And it was, they just loved like no other, like I’d never seen love like that. And they supported me, like they would get in buses, and come here to the hospital and have youth group with me here. Like it was so amazing to see the outpouring and love of my faith community. It was beautiful.
So, two things come to mind. I felt like the friends and family that came to be with me in the hospital, not all the visitors that crowded my room on weekends, but the people who were able to be there and see me in therapy, attend sessions with me. I felt like those people really got a true glimpse of what I was going through. And, then the second thing that was most helpful is the peers with spinal cord injuries who came to visit. And ,then also people who were injured around the same time with me and going through the similar experience.
I would say initially the community support we had from our friends and parishioners and the school was tremendous. We had a lot of people who were just there for us unconditionally. We did eventually see a psychologist, everyone in our family did except my daughter, interestingly enough, whose, her response was, "what are they going to do, fix me?" So she, to this day, she hasn't had any sort of counseling, she flatly refused. My children went, my boys went once or twice, didn't feel at the time that they were getting anything out of it, but I think they did. In terms of myself, I went several times. Probably for the better part of a year, I went often to see a counselor and I found it very, very helpful.
My mom was the only one that really kind of gave me the space, you know what I mean. Everyone else was, I felt, so judgmental about how I handled things, and she's, she's my mom, she got it. She was like, "I, you know, I'm going to give you the space, and I get it that you are looking at me and just don't even know what you're looking at right now. I don't look anything like you're used to seeing me." She was, you know, she was the most helpful for me. There was no one else, there was no one else I remember every coming, and sitting, and talking to me, and telling me any thing I related to. She was the only one who sort of understood, I felt that understood me, and understood why I was reacting the way that I did—because she's my mom.
It was definitely my parents and my really close friends. They were there every step of the way, and pretty much at my bedside, waiting to hear. They, I think, were more afraid than I was at a lot of points. But, when they were in the same room as me, they never showed it, and that was probably the best thing I could’ve had.
My mother, of course, she was there every day. She missed a lot of work because of it, and my stepfather, who's the man that raised me, he was here every day after work. He never missed a day, and they were always there, you know, just pretty much make sure I was going to be all right. And then I assured them that, you know, I was going to get past this.
For me personally, it was, I relied on myself and my faith. I had so much support; I had so much family and friends around me, and maybe even not right next to me, but around me, that it just gave me so much peace and strength.
For me, the personal support that I received from friends and family was probably just amazingly huge. Because, I didn’t have to worry about—not to say I didn’t worry about them—but I didn’t have to worry about the kids, I didn’t have to worry about, you know, my house being clean, or if there was food in the house. I mean there was always somebody. You know, like I said, we had an amazing support system. Personally, my own support, obviously my parents are fantastic, but my dad was huge. My parents were both there, my mom definitely for the kids, but my dad was with me at some point probably every day. I mean, there were days if it wasn’t for him, I wouldn’t have eaten. He was just there constantly.
I have two good friends, who were just unbelievable. One of them in particular had lost her father to pancreatic cancer, and she set up a website where people could go to for information, for updates, for offers of assistance. And my other friend, Bev, she set up a foundation to channel—people just wanted to give something, they were desperate to help on one hand, and to give on the other hand. So, at first we were overwhelmed with basics of food, or sandwiches or whatever. It was just very overwhelming. So, having, as I said, this one friend set up a foundation, to be able to say, “Okay, if you want to give money, please channel it into our NTAF.” And the other, “If you desperately want to help, this is the list of chores that could be done. The kids, the two younger ones, it would be great if someone could take them to the movies. It would be wonderful if someone could take them shopping when they need new sneakers or whatever.” So, those two really stick out in my mind.
Oh, without a doubt my wife, yeah, without a doubt. I mean she was just always there, even up till now when there’s certain things that I can’t do. I’m really bossy, so I mean whether it was then or now, it’d be like whatever I needed done. It was like it didn’t make sense to me why she couldn’t drop what she was doing and help me, and she would, that was what’s amazing about it. So, I mean I could ask her for help with anything and she would be right there. So obviously in the first stage, she was right there next to me, she wouldn’t leave my side, she was without a doubt the best person to have around.
I think the most helpful to me personally that I got from inside the hospital during my rehab stay was a nurse named Judy Spaulding. At the time, she was my mother-in-law. And she had told me, “stop riding motorcycles. You’re going to end up a patient, or you could end up a patient at Shepherd Center.” And you know in my confidence, I knew it was never going to happen to me. And when I came in, when I was injured, she made sure I had a bed. She consulted with the physicians, she made sure there was space for me, and she never stepped on my toes. She never over involved herself in my situation. She never said “I told you so.” She was there to sit by the side of the bed with me, and just talk, and be normal with me. And so, it was like a gift that the universe or God had given me, that somebody I already knew, who understood what was going on, was already present in my life and in my rehab. So, that was super valuable and she’s got a space in my heart forever for that.
My sister in-law, and my brother in-law and their significant others were the first ones there because they were there when it happened. So, having them there was good because it just is a really scary thing to have to take in on your own. And then we were not at home when it happened, we were in a different state, so we had to wait a little while for our parents to come in. But, they came soon after and pretty much our entire immediate families came to the hospital as quickly as they could to be with me, and to be with us, and just kind of grieve together what had happened and take it all in.
I think having family and friends around was the best personal support. And, not necessarily talking about what had happened. I wasn’t ready to talk about my injury, or reflect on any of what had gone on in the past few weeks or months. Just having people around, and trying to do the same things that we had done before, and having them treat me just like a normal fifteen-year-old. We’d watch movies, and hang out, and just act like everything was fine, and we could still joke, and laugh and all that. I think that was the most helpful thing for me as opposed to people trying to ask about how I was feeling about everything, what was going through my head. I just wanted to get back into my routine. And I think that having people around, just their presence, not even if they were doing anything productive for my family, but just, having friends around, and family there meant a lot. I mean, that was the most helpful support.
Having someone who was in a chair speak, and on some levels, it wasn’t as helpful as I would’ve liked it to have been. But some of the information that I was able to glean from that conversation, even it was in a class setting, you know, was at least helpful. And quite frankly, had I had someone like me talking to me then, I can recognize that how beneficial that would have been.