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Q&A: What's the best advice you have for others in your situation?
Advice for People Living with a Spinal Cord Injury
Q: What’s the best advice you have for others in your situation?
Here is the best advice from people living with paralysis: Embrace physical therapy. Be patient and creative. Listen to yourself, and go at your own pace. Ask questions. Don’t say “I can’t do this, I can’t do that.” Think to yourself, “how can I do this? How can I do that?” And most importantly, “don’t let your injury define your life.”
For more heartfelt advice from people living with spinal cord injury, watch the videos below.
I think the best thing is just to accept them for who they are. Now, like before, to me Maurice is like the same person he always were, he just doesn't walk around, do the things he use to do. He's got the same thoughts, he got the same ideals, he likes the same movies and stuff, so he's like the same person to me, he just doesn't walk around and do things.
Don’t do anything for them unless they ask you, because they kind of get upset. They want to be individuals, and when you start doing things because you can do them more quickly or more efficiently, that’s great for you, but it’s not doing anything for them.
Talk to people. Seek people out. Seek people that have been through this, but by the same token, always remember that you have to wrap that into your own personal life. So you have to be cautious in the advice that you seek and the answers that you listen to. But if you speak to enough people, it will come around to your story, and you can blend it all in together where it's good for you and healthy for you.
The best advice that I can give is just to continue to be a sibling. They're still your sibling, they're still the same person, and it's going to be okay. It may take a long time to know that it's going to be okay, but it is.
Help when they ask, don't be worried about them, don't think that they're fragile and they're going to break, they're not. They'll tell you when they need something; they'll let you know what you need to do, and then you do it. And otherwise just live your life; be happy you're with a person who is fabulous, if hopefully you get a person who is fabulous.
Be prepared, be prepared for worst case scenarios, be prepared for the rain, be prepared for the sun. Have an extra outfit, have extra catheters. Have extra anything, underpads, whatever, because you may or may not need it. Hope fully you never need that bag but at least you have it.
Don't make any major life decisions regarding anything for the first couple years, at all. Just take it day-by-day. This is a, this is a metamorphosis of sorts because you really have to grow into this injury. And it gets better every day, it's just something that you're going to learn and, you know, get better at. And, it's like a new job; it's like on-the-job training. And you're going to get better at it, you're going to learn more things as you go on, but it's something you have to grow into. So I would say, people give it a little patience, and it will get better every day, and don't make any major decisions regarding finances, or businesses, or friendships or anything at this point.
Continue to have fun and be happy. That’s something I told someone not too long ago. The question he asked me was “when people ask you what happened, what do you say?” And, I make up funny stuff like “I was a dolphin racer, and I fell off the dolphin, got trampled by a shark.” I just make up stuff, and people just look at me like, “what in the world are you talking about?” Unless it’s a serious conversation, I really don’t reveal even what happened to me. I just come up with something off the wall. You know, you got to remain happy, keep your faith, and just continue to have fun and live your own life.
Cope with the problem that you have if you have a handicapped son or a daughter. Cope with the problem, you know, do the best you can, and if you can’t do for all this, try to send them to a place where they can take care of them. Then understand what your problem is, then if you can, bring him back home, or wherever they’re at, and try to live with it. It’ very hard at the beginning, but when you understand what the problem is, and that….But have fun with them, take them to places where they can’t go or that, have fun with them, grow up with them. They need you more than anything else.
Time is short for your rehab. You’ve got to make the most of each rehab day because those days, you don’t get those back. If you don’t utilize those therapists, you’re going to pay for it down the road.
I would tell them to not let the disability, your physical disability, give you an emotional disability also. That’s what I would tell them. But, I want to tell my spinal cord injury community that we have some contributions to bring to table. Get off your knees, stop playing, stop letting people make you an infant again, and go in a forward motion. That’s what I would tell them.
The truth, in addition to the love, the truth is probably the most important thing you can give people going through it. Don't say, "this is going to be a walk in the park," it is literally not going to be, but it also is not going to be a spiritual walk in the park at all. You're going to work your butt off, but you have the wherewithal to put up your own fight. And if you do that, you will find that your life just has greatness and it has beauty in it.
You can always look one door down to the right, or one door down to the left and there’s someone that is going to be worse than you. And, you got to accept that and use that as a motivation, that’s what I did. You know, my neighbor had to drive his chair with a sip-and-puff straw. And I was able to get out of my bed on my own and roll to the cafeteria, when he had to have a Hoyer Lift move him. His attitude was better than mine was at first. So, I won’t quit, every day is going to get easier. And no matter how much pain you’re in, that’s one thing that you can’t look back and relive how painful something is, you can never hurt but you can’t relive the pain. So, every day gets easier as far as when you heal, and then you got to keep looking forward. You can’t look behind and put yourself in the dark, you got to live for tomorrow and keep rolling.
My best advice for someone in a wheelchair is that you’re going to be scared. You’re going to be scared of the unknown, and you’re going to be afraid that this isn’t going to work, what people are going to think. The reality is you just got to do it and don’t care what other people think, because this is your life. So, quit worrying about what others think, and just be the best that you can be.
Get a support group, either from your church, hospital, friends, relatives; I think that would help a lot. Yes.
You're at a disadvantage physically, but you don't have to be at a disadvantage mentally, or emotionally. That's, that's you, you can control that, you know. Take advantage of what society has to offer, if someone has information for you, take that information. Don't let your pride get in your way, because there are a lot of things out there for you, there's a lot of help out there for you, and you just have to be a man and suck up your pride, and just go for it, you know. Ask for help if you need it, you know, there's nothing wrong with that.
My involvement with the disability community. I’ve learned a lot and I’ve made connections with a lot of people. A lot of self education and the realization that it’s a big community out there. And someone said to me, “Gosh, you see more and more people in wheelchairs.” And I said, “Yes, they didn’t live 20-30 years ago. Medicine is so good now you can have a devastating injury and you’re alive.
Again, it goes back to sports, everything comes back to sports because sports is like a family, it's like a network. Everybody is in your situation, they understand you. Basically, you both, you can talk to them and they'll understand, and that is something that's very helpful. To have somebody else that's in your same situation talking to you, and giving you advice.
To try everything. I know in rehab they had you check boxes of what you used to do. Your life is different, try everything. I concentrate a lot on adaptive sports. I didn’t play any of these sports before, but I found one that I loved and it really got me out of depression. I played tennis when I was maybe five-years-old but it was one of the biggest things while I was out of work and trying to figure out what I wanted to do. I tried everything, I rode on the Chattahoochee, I did adaptive golf, played basketball downstairs at Shepherd Center. Try everything that you can. If you can try traveling try it. My first trip, we went to Cincinnati as a test run, you’re not going to know until you actually try it, and that doesn’t go for somebody that is injured it goes for anybody. The more you try you are going to find out either hey you love it, or hey you don’t like it, but if you don’t get out and try, you’re not going to know.
I would say, have a lot of patience. Have a lot of patience, especially, like myself, I was used to doing everything on my own, for myself. Everything from working, to whatever it was, you know, for myself. And at the start, when I wasn't even able to even hold a telephone, getting a drink of water, anything, you know, becomes, like, this major obstacle, obstacle, that's all. But if you continue to see them in that way, that's what they gonna become to you, it's going to lead to depression, headaches, frustration. And on the other hand, you know, it's, you know, once I seen, I started picking up a cup, I started grabbing the phone, I started grabbing the remote control, it made things so much easier for everybody. But, I mean, I think it all starts with having patience, accepting your disability, and making the best of it.
You know, I think that it that she is still your mom. You know her, and in my case, I mean, her, her mind, and her thoughts and her feelings about you have not changed. And so, what's important is the relationship that you have with one another, not the form it comes in physically, literally. I think that was a big, that was a big thing for us was kind of realizing even though there are elements of our lives that have changed, we're still the same people that love each other and she's still my mom. And she's still, even then, you know, took care of me like she was a 45-year-old woman and I was a 14-year-old girl. It was still like that, you know, she's still the same.
Recognize that it does get easier. You know, it’s a tribe that nobody would ever join by choice, but at the same time, as you go further and further down the path, it does become significantly better and significantly easier. And the things that you struggle with today, tomorrow will be—you won’t even pay attention to it as they’re getting done. I know that for me, I remember sitting in the hospital trying to get my sock on. And it just, you know, and watching, seeing my dad out of the corner of my eye at the other side of the room desperately trying to just refrain from coming over to help me. And just getting that sock on was such an effort, and thinking “oh my goodness, how am I ever going to go back to work?” “How am I ever going to live a normal life if I can’t even get my sock on?” And today, as I got up this morning and took care of myself, got a shower, got dressed in the closet, went out and had my breakfast, got in the truck, came down here. I mean, getting my sock on was not even something that I just, I mean, "what socks am I going to wear?” was the only question regarding that. So, in that sense it really does get better.
I just felt taking day-by-day was better for me, maybe somebody else no. But, in my situation and my feelings, day-by-day was, I could handle, you know what I’m saying? Then knowing this is going to be your, like the doctor said, “What you see is what you got.” I mean that was, that was a low blow; that was like a slap in the face. I guess they have to be that way, but it’s hard. I think day-by-day is better.
Just that it’s going to take time to get everything back on track, and not to give up, and that it’s going to get better. And you’ll get to where you want to be in life as long as you keep going.
To find someone taking care of their child with a similar injury level, and be able to meet, have an outlet. I think, you know, take time for you also.
Don’t lay down and be a quitter; keep fighting, keep trying. I spent thousands, and thousands and tens of thousands of dollars in therapy. I tried flying over to Istanbul, and doing bone-marrow stem-cell transplant surgery. Through research that I’d down on my own, I wouldn’t have gave that up, I wouldn’t have said, “I shouldn’t have done it,” even though it didn’t work. To know that I put every effort forth that I had was still worth it to me. I gained some life experiences from it.
I don’t think you can treat the person with the disability as fragile. I think you need to give them independence to do what they need to do. I think I step in and give him a lot of assistance in certain areas but then he does his own thing. I mean, he’s completely independent and I think that is a huge, huge misconception about disability—that it makes you totally dependent on other people. And it doesn't, and it doesn't have to. You can make yourself dependent on other people, but I think your family needs and to encourage you to live your own life.
The best advice I could give anyone in my situation is to get up, and get out and get going. Drive yourself if you can, do, do, just go and do. Don’t sit at home, don’t sit behind the TV, and medicate, and medicate and medicate. Just go, go, and do, and see and experience. Like there’s so much out there that is so amazing. Travel. I just think that when you stay in your place, your house, if you’re able and you can do it, go. Take a friend, take somebody with you that can help push you if there’s a big hill, or you know, just have an adventurous side and enjoy it. Enjoy it as much as you can.
Always appreciate where you are. Have gratitude for what you have, because you could easily not be here. Just be grateful for where you are. No matter where you are, there’s always somebody who’s worse. I might be in a wheelchair, but I have a home to go to. I have a roof over my head; I have a family that loves me. So, there’s always someone who could be worse, and it’s very important to be grateful for where you are.
Constantly be there to answer his questions, his needs and demonstrate to a child, or young adult or whatever, that you're not walking away, that you're right in there trying to help the rehab. One of the incidents in the hospital out there, I think his mother and I were both there, but anyway, he was talking and there were five other patients in the same ward and he said, "You know dad, you're here a lot, mother's here a lot, those two fellows over there, nobody ever comes to see them." And I said, "Well, why not?" He said—one had been in a motorcycle accident and a car accident. He said that their parents apparently have told them, "You got yourself into this, now you get yourself out," and they never showed up.
I just wish I was told that, you know, “it’s going to be harder when you go home. It’s the real world, and it’s going to take adjustment, but it does get better. And that you can be happy, and, you know, you really can and enjoy life.” My love for life is more than I ever had, and I mean I wouldn’t trade it for the world.
I think you always have to advocate. You, when things seem like you've come to a point where it doesn't seem like you can get any further, always be willing to look outside the box. You have to be realistic, but at the same time, you have to think, you know, maybe there is something else out here that could be a benefit, you know, that could help him make the next step or get to the next level. I always feel like you don't want to give up, you want to be realistic, but you don't want to give up.
Make sure you find a bicycle shop because it saves you so much money compared to using durable medical equipment vendors and time. Make sure you know how your insurance works, and know what you can write off and can't—because like I always get all my tax money back and I make good money, so they take a decent amount, but I know what I can write off. That's really important. Be as independent as you can be and ask for help when you need it. Don't believe people when they tell you how impressive you are. I mean, if they’re doctors, or your rehab folks or whomever you’re making great strides, of course. But like in real life, it's real life, and you’re just going through out your day, and you got dressed and got in your car just like everybody else got dressed and got in their car. So, don't let that go to your head because that's the other thing you hear all the time. "Oh, you’re so impressive. Oh, I could never do that." Like, it's... no, you need to get in the car, you get in the car. It's pretty big basic. Be aware of para devotees. Just know what they are, I am not going to form your own opinions, but be aware of them. Don't plan your day based on accessibility everywhere. If you want to try a new restaurant, go try a new restaurant. If you, you know, show up somewhere and they don't have handicap parking or they have got steps, ask someone for help if you really want to do it. Like, you won't be the first person carried in and out of a bar. It’ll be fine. If you want to do it, do it. Don't plan everything around making sure things are accessible. A vacation? Absolutely. When you’re talking about days on end, you need to know that you can get in through a bathroom door and have a place to bathe. But, like in real life, if it's for a meal or something, just go and try to do it.
Be aware. Always communicate. Listen to the family member that’s injured. Ask them questions. “How are you feeling?” “Are you okay today?” “Do you need anything?” Always just make sure that they’re comfortable but don’t overstep. Josh was always like, “don’t stepover and grab the door for me. Let me do it. If I can’t do it, I’ll ask you to help.” Let them do things themselves sometimes and always be there for them. Be a good support system.
The biggest advice I can have for other people is to be persistent, to be patient, and to be an advocate for your child in any way. You may have not been an advocate before, but you will learn how to be one. You must speak up because nobody else will.
You know, life is good. And actually, that’s T-shirts, and I love those, but life is good, and life is what you make of it. And get out there, explore things. What do I miss? I miss walking on the beach, especially with my wife, but now they have mats on the beach, so I can roll to a certain part of the beach and get where I need to go. So, there’s solutions to the problems you may have in daily life, and there’s people out there that are willing to help, but you have to ask. You’re not in this alone no matter, you may feel it at the time, and you may feel nothing is going right, but give it a chance. Because everything in life happens for a reason, and I never knew what that was. And maybe it was for me to sit here, and tell my story and help other folks, so if that’s what it is, so be it. But life is good; life is about the experiences and making new ones each year.
When my husband was in rehab, you know, they gave us a little therapy. His family was very anti-therapy, I was open-minded and I embraced therapy. I went to therapy on my own, even though my husband wasn't cooperating with therapy because he's strong, he's a man, he doesn't need therapy, and his family didn't believe in it. But go ahead and do it for yourself and, you know, if the opportunity arises later, and you need a little therapy, go ahead and get it.
So, I got, a friend of mine, we always—and he actually is a wheelchair user as well, but he’s a quadriplegic—and we always say there’s never any two situations alike. So, giving advice, you know, for someone else’s situation sometimes really feels miniscule, but it’s just an encouragement to understand that it gets better, that life goes on, that it’s never over until it’s over. Meaning that there’s so much to look forward to, so much to do, so much to achieve only if you do it. That same friend tells me as a saying, “you either get busy living, or you get busy dying.” So, my encouragement to others is so much to live for, just go find it.
I would tell them whoever is going to be in charge—whether it's a husband, a son, a daughter—whoever's going to be there, to muster up all you can every morning when you start out knowing that you're going to have to go through situations you've never dealt with before. You might not have the time to write all the questions down, but as a question comes up ask, ask it. If you don't ask, it's going to go away and the next thing you so is you're going to have a bunch of mush in your head because you're going through things you've never seen, never dealt with. Ask them one-at-a-time, or make a list if you can do that. I'm not a list person, I'm the kind of guy that goes, "what is this?—and don't walk away from me, tell me right now." And that's where the pit bull comes in, because if you need to walk away, guess who's hanging on to your butt still asking that question—it's me. And that's what somebody in the family needs to do this. You as the person delegated to watch over your loved one, you need to be able to take care of anything and everything that comes up. And that it's not just sitting there feeling helpless, it's asking questions, it's doing something.
One of the things that I found helpful for me, and I can only speak for myself, is that you can't have two masters. You know, you can't use a word “I used to be this, I used to be that, I used to be that” because what are you saying about the person that you are? So, at some juncture, you have to “used to be” to fertilize the person that you are. If you don't nurture that, it never becomes because this person can't be realized because you’re constantly comparing yourself to the person you were. Because the person that you are is just fine. We have to nurture that, you know, and for me, I had to have like a funeral to rest the person that I was before so that I can actually cultivate the person that “I’m going to be.”
My best advice is whatever your heart, that you feel in your heart that you want to do, go for it. Whatever you have to do in therapy, whatever you have to do that’s extra to be able to, if you need support, to be able to do those things, do it, go through that process because it will be worth it in the end. If you go through that process of doing whatever your mind and your heart is telling you want to do, because you don’t want to have regrets. Because I look back at me in school, if I wouldn’t have gone back to high school, I wouldn’t be where I am. So, I would’ve had a lot of regrets. And so, in order to avoid regret, whatever you have in your mind and your heart, do it. Don’t let nothing hold you back, don’t let nothing stop you. Just keep moving forward and do what you got to do.
Well I can’t just open their heads, and plop in the knowledge that I’ve gotten over the years. But I think I would say is, talk to people that have been injured, talk to people that are “in their shoes,” so to speak, that are injured that have been around doing some things, because I think that’s where you’re going to get your best advice.
Don’t ever give up, and if you can have access to something, you can accomplish it. So, the only question is not whether you can do it, it’s how are you going to get to it. And so that encouragement has given me more hope than anything. So, but it’s true even though you don’t realize it.
I would just tell them to keep their head up; it’s going to get better from there. It might seem rough now but it does always get better. I’m not saying that it’s easy, because it’s not easy, but it will get better. You just have to try, you have to push yourself. If you can push yourself you can do it.
Sometimes you need to fake it to make it. And, really, if you can get control of your own emotions, it’s going to affect how others react to you. Those are connections that you want and need in your life to move forward. Just try to keep things light and not come off as overwhelmed and depressed all the time, because that’s going to be a scary thing for other people to see. And it’s going to eventually going to scare people away.
To really get more into it, and be more active about getting questions, I mean, getting answers to questions, instead of just kind of letting things go rolling along.
Doctors can, well they’re compassionate, and they kind of tell you from the hip. You can learn that some doctors will be very blunt, abrupt, and say, “Okay, he’s not going to do this, he’s not going to do that.” You want that hope, you want that hope. And I think the different people that you will meet along the way, some are great with encouragement, some are on the negative side. You have to stay positive because there’s always improvement, even a little improvement. And someone who had told me, who had a family member injured, told me the same thing, that “you’re constantly going to see improvements, and not to listen to them.” And we know that two people can have the same exact injury and the outcome is going to be different.
Have faith, be strong, encourage yourself. They really can do anything they want; if there’s a will, there’s a way. There’s so much out there. The technology is progressing so much, and there’re so many people out there who are willing to help. It’s tough; I’m not saying it’s not tough. But, I think there’s great light at the end of the tunnel, and to be able to see someone who has suffered so much make a life for themself. Encourage your patient. What I’ve seen or heard of is that there are some patients who were just so terminally depressed. They don’t want to go out; they don’t want to leave their home. Go out. The world is out there and it’s wonderful. Go take a walk, even if you have to take the vent with you, and if you have to take the feeding tube, and the whatever. Life carries on, enjoy it, it’s great.
The best advice that I have is to make sure that you're always communicating, and that you work on that just as much as any you work on any other part of your relationship. That the communication is, especially for us, is the key to everything, because if you're not communicating, you're not going to succeed in the other parts of your relationship.
That people understand that having a spinal cord injury is not by any means the end of the world. It may seem like it might when you first wake up in the hospital and try to grasp the concept of a spinal-cord injury, especially when there's limited exposure that you have prior to the injury, but there's definitely a light at the end of the tunnel. There's definitely hope, there's definitely potential and possibilities. There's ever-day progress with laws, and technology and acceptance in society. So, it's definitely not the end of the road. It's just the start.
Don’t sweat the small stuff. I mean there’s a lot that you could mope about, and get upset about, but when you kind of look at where you are, that you’re able to live a life of some sort, to be connected with people around you. When you realize that you have those options still, it doesn’t help to be negative about little things when you can find so many other smaller things to be happy about. It really is all about your outlook, and if you dwell on the past, then how are you going to grow? If you’re not looking for it, you won’t go forward.
First and foremost is to not let what happened to you define your life. I mean, most of us went through something tragic, something, in various degrees of very horrible things, and it's easy, I think, when you surrounded by non-disabled people, your friends and family, for them to feel sorry for you and for you're to internalize that that is the defining thing and that you're never going to get over it, that you're always worthy of pity. And that, you know, you have a right to feel that way, you have a right to feel sorry for yourself because something horrible happened, and if you don't get over it, then it will define your life. And I think that the advice I would have is get to know people who are like you, that have disabilities, that you can realize you're not alone, and that you're really not as special as the rest of the non-disabled world makes you feel sometimes.
Hang in there. If you have a new spinal cord injury, hang in there. This is something that’s unknowable, unforeseeable, something that none of us signed up for. None of us planned on this, we never painted a ramp or an accessible van into our personal paintings of our futures. But if you give yourself a chance, you’ll be surprised at what you can do. If somebody had asked me if I could live this way before my injury, I probably would have said “no, DNR – do not resuscitate me.” But I’ve learned that I’m much stronger than I ever thought I was, and that life is much more rewarding than I ever thought it could be. And that if I set my goals to something, I might have to rethink how I’m going to obtain that goal, but I can still do it. You can still obtain your goals, and don’t give yourself a short window of opportunity. And one more thing that I can add to that, if you think you can’t do something, you probably can’t. If you think you can do something, you probably can. So, don’t say “I can’t do this, I can’t do that.” Think to yourself, “how can I do this? How can I do that?”
Be patient, but believe and stay encouraged that you can have whatever the life is you desire to have. You just have to be creative about getting it.
At first, I was really stubborn about doing things by myself, and the way that I learned to do things by myself was by basically not accepting help. So when I learned to get dressed, I would close the door to my room, not let my parents come in, and spend two hours on my bed on a Saturday morning, just trying to get dressed. And on the weekdays I usually would set a time limit, I had 20 minutes to try to get dressed, and then if by the end of 20 minutes, my mom comes into help me, or something like that. Just so it was a more manageable amount of time when I had to get up and go to school. At the beginning, it was by refusing to let anybody help me and that got me a lot of places in terms of figuring things out. A lot of times I figured things out through desperation—“I have no other way to put my socks on, I’m just going to bite them.” And, for a while, I put my socks on with my teeth, who knew that was going to work? It wasn’t until you get to that last point where you’re really frustrated that you go with something else. And I think that just setting the bar high. I was expecting that I’m going to learn something new and do something better, and not letting someone tell you that you can’t. I think you’ll get a lot more places than you think you would. And so by kind of saying—I wanted to go abroad and I was like, “I’m going to go study abroad in another country,” and people were like, “Oh, well you can’t do that.” I was like, “Well, I’m going to figure it out.” I think that’s kind of the attitude that you have to have. Otherwise, you’re going to end up with some sort of ceiling.
People need to keep their drive. They can’t go home from the hospital and get, I wouldn’t say lazy, but they need to realize that you’re not going to learn things by not doing them. So, you have to if there’s something that you want, you have to try to push that envelope and be willing to try. One of my biggest things was I wanted to be able to get off the floor, the ground because I didn’t want to. It was a point of pride because I knew other people who could do it and I thought, “well, if they can do it, then I’d like to be able to do it.” But it was also, you know, if I’m out in the middle of nowhere, and I fall in the yard and there’s nothing around for me to get back up onto, I have to be able to get back up from the ground up to my chair. And otherwise, I’m just going to be stuck there for a long time. And that was one of the things where I had to think to myself, I was like, “I need to keep working on this, I can’t—if I’m not comfortable enough to get out of my chair and try that, then I’m never going to learn how to do it.” And it was the same thing with the pool, if I’m not comfortable enough to try to get into the pool, and get out of my chair and do that, then I’m never going to get good at it. And now it’s one of my favorite things to do. So, you know you have to be willing to try those things, you can’t not try them especially with transferring and getting out of your chair. Just leaving your comfort zone, I mean you always have to leave your comfort zone. That’s where you learn.
It's not the disability that defines the person; it's what you make out of your life. And, you can be as successful as you want to be, or you can do nothing, I mean it's your choice.
Be patient, be very patient. Show a lot of assurance, love. Show them all you can give them because they need it a lot of the time.
Accessibility in the rest of the world is much better now than it was when I injured. And so, you really can get on with your life, and you need to, really sort of suck it up and get on with your life. It’s sort of a cliché, life is what you make of it, but it’s really true, and it’s hard to believe in the early stages. Sort of, and you can say “oh, have faith.” You know, I’m not a particularly religious person, so that term sort of rubs me the wrong way. But, the most important thing I think you can do as a person with a new injury, when you get a chance, is to connect with other people that have been injured for a while. The notion of what is called “peer support”— talking with and seeing other people with spinal injuries gotten on with their lives and doing all kinds of amazing things, can give you the confidence to get back out there yourself.
When I think when you meet someone that is newly injured, my advice would be to hang on, it’s going to get better. It may not get perfect, and it may not get where you want it to go, but it will be better than it is today.
Time I think, just give it time, it’ll come. You think you’re life’s over, but it’s just a door closing and a window opening, and another door opening. It seems like life has just got fuller from it. You know, we’ve gained from it, everybody’s gained from it, everybody surrounding Johnny has gained from it. He went to work, and met new people, and those people have hung around, and we still have those as friends, he has them as friends. My friends have become closer with Johnny and with me, I think, through it. So, I think just give it some time. It’s not going to happen overnight, and you’re going to be very sad for a long time. And 25 years you’re still going to cry.
Oh, it’s very bleak when it first happens, and most people don’t have any knowledge of spinal cord injuries. I would say find a good place like the Shepherd Center that your child can go to. Don’t ever give up hope. Things will amaze you, and what your child can do, give them a chance to do it. To listen to what they are doing and going through. And support them in what they want to accomplish. Be there for them but don’t try to control them.
My advice would be this, that you can lay down and roll over, or you can say, “I’m going to fight.” “I’m going to work to improve.” “I’m going to figure out a way to do this, that, or the other that are challenges now.” You have to learn how to be patient, and I’m an instant gratification kind of girl so that’s been a big one for me. And people told us that, like “it will take time.” “Things don’t really settle down until you know for two years.” And to be honest, that’s really true. But I really had to learn how to deal with frustration, that’s natural. But don’t give up, keep going because it does get better but it’s up to you.
What I’ve come to realize, and even here, my work here, is the sooner people claim their identity, the faster they go, and the more places they go and the more things they do. And what I mean by that is, you know, instead of resisting my spinal cord injury, or resisting my disability, I embraced it. And as soon as I, and I didn't really know I was doing that back then, but even now, you know, I’ve studied everything from, you know, identity, politics to culture, to community and stuff. So, what I began to realize was that I was beginning to slowly, reluctantly, in the beginning, embrace my disability as part of who I am. And when I did that, you know, a whole another world opened up.
People in my situation, all I can tell them— live your life to the fullest. It's not over with because you got a disability; you know what I'm saying? You always going to find something that's going to make things better for you. When you do that, you find yourself at peace, because I do.
I think the best advice I can give is know that you can live a great and fulfilling life, but it’s up to you to do that. If you’re going to sit at home and wait for somebody to give you something, or feel sorry for you, you’re going to have a boring time at home. You can absolutely set your goals, you can strive and work hard to achieve them, and you can achieve them. I’m proof.
You have to take this one-day-at-a time and you need to focus on what you can accomplish today. Living with spinal cord injury, the unexpected can happen tomorrow, and just because you have a spinal cord injury you’re not going to be immune from other things that can happen to you. Take this one-day-at-a-time.
Stay the same. Don’t change because your child is disabled. Don’t become a worry wart, don’t become overly anxious. Stay the same mom that your child has always known, because that will keep them focused, and that will keep them realizing that they have you. If you change and become worrisome, they’re not going to want to talk to you, because you’re going to panic and get nervous about every little thing. Stay the same mother because that’s who you are, you’re their mother. You still have to be sensitive; you still have to care for them, but don’t let the disability take over your life. Again, it’s a state of mind. It doesn’t really have to take away who they are, but sometimes we let it take away who they are. We still have to stay mom. If you scold them about leaving something on the floor, still scold them. Not to be mean, but to let them know that mom hasn’t changed, she still loves me the same as she did before. She’s not pitying me, she not feeling sorry for me. I’m still her son, I’m still her daughter.
In my situation, it's just that, you know, we have this model at Schwab, and it's something I live by. That's just "life doesn't stop for a disability," you know, don't let this hinder you. And also, just, you know, we had one guy, he said something that—this was about 10 years ago, and it still sticks with me to this day—he said, "Don't let grass grow under your chair, you know, do something with yourself."
It’s try to live life. I think that that is so important not to be sorry and not to walk around with our heads down, but to make the best of everything we can. I think the most important change in Patrick’s life was when we took our first vacation after his injury, which was a full year. He never thought we’d go to the beach, and we took him to the beach, and we took him in the ocean. I think that it changed life for us, so we do it almost every year. I think that’s a part of us living life, and we enjoy our holidays, and it’s a big thing. Living life to me is really something that we try to do.
Listen to yourself I guess, and do things at your own pace, on your own terms, right. Because, everyone’s going to have lots of great advice for you, but in the end, you have to live your life, you have to be comfortable with things at your own pace. And so, kind of do things when you’re ready, and listen to your heart. But I think patience is the other thing else I developed. I was the most impatient person in the world, especially in this, like, era where it’s instant gratification. You have to learn that you’re limited by a pretty clumsy body now, especially if you’re a higher- level injured person. And I think just learning how to patiently exist inside this body takes a lot of time.
I think the best piece of advice I would have to give to another spouse is to—even though a lot of the time your instinct is to hold in what you are feeling and to not share that something might be hurting you to your significant other because you don’t want them to feel bad—it’s really important not to do that. It is really important to be able to communicate with them what you’re feeling and then maybe, you never know, they might be able to feel like they can communicate what they’re feeling to you. Because a lot of the times I found that he’s not telling me something he’s feeling because he doesn’t want to make me feel bad, and I’m also doing the same thing. But we’re in this together, so if we can’t talk to each other about it, we can’t talk to anybody about it. And, really being able to communicate and be open with each other about what’s going on in our hearts and in our minds is what’s going to help you through that time more than anything else. So, just be open with each other.
Looking back, I think the things that were the most helpful were touching base with other families and parents who had had a child that was injured. And a child that was reasonably, recently injured, within the last four-five-six years. It was helpful talking to those people because they had been through the hard part that we were going through and they had come out at the other end, so you knew it was possible. So I had some really good conversations with some parents whose children were teenagers when they got injured and were now in their late teens or early 20's. And it was really helpful, they were really optimistic, they were encouraging, and it let us know that eventually, even though we didn't feel okay now, that eventually, things were going to be okay.
Going into this, you have to be patient. You also have to be understanding that, I think that the person going through this —the person in the paraplegic or quadriplegic situation—probably thinks that it’s only happening to them, and it’s not, it happens to the whole family. And sometimes they don’t realize that, they know that, they know in their minds that it happened, and they’ll say, “I know this happened to all of us,” but their reactions and their actions, and the things that they say or do, don’t always indicate that you’re part of that. So, you kind of have to patient, and know that they might not get that, but you’re a part of it too. It’s not just their life that’s affected; it’s everyone in the family.
To just be patient. I know in the beginning it’s very difficult, it’s kind of overwhelming sometimes, but like I said, in time it all gets better. You have to be patient. Hopefully you have a great support team around you to help you through it, but I promise, it does get better. You just have to be patient.
Take what comes your way, definitely; anybody who has become injured. When I was injured, I didn't want SSI, Social Security Income, I didn't want that I said "no, I'm going to get a job instead; I don't want to be spoon-fed anything, I don't want help with college funding, I don't want any of that stuff," anything that came my way. And, my mom helped me realize that I deserved it, so whatever was possible to get, get it as soon as you can, definitely. Don't let it pass up the chance to get money, or get help with things, just take it as it comes, definitely.
Obviously, four hours in the hospital and only two of visiting time in the ICU. So, I should have dogged doctors more to tell me what exactly was going on, and not just rely on a nice nurse that would spend some time talking to me.