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Q&A: What were the important milestones in rehabilitation?
Rehabilitation Progress After a Spinal Cord Injury
Q: What were the important milestones in rehabilitation?
In 2020, the average length of stay in a post-hospital rehabilitation program for people with spinal cord injuries was 20 days, down from 90 days in 1970s. Rehabilitation begins with therapists creating a personal rehab program, with goals of maximizing physical function and community reintegration. Patients work with a team of experts made up of physical therapists, occupational therapists, psychologists, social workers and vocational and recreational therapists.
During physical therapy sessions, patients focus on regaining strength and mobility through stretching and exercise. Occupational therapists teach patients how to navigate daily life in a wheelchair, practice grooming, cleaning, cooking, eating and other activities of daily life. Patients may also work with a psychologist, who helps them develop new coping skills. Social workers help patients prepare for a successful transition from hospital to home.
Rehabilitation is a process of achieving milestones that enable more strength, greater independence and a brighter outlook. We asked 100 men and women living with spinal cord injuries about the important milestones in their rehabilitation. Watch the best answers in the videos below.
The driving, I think that’s number-one, and then getting a job. That was very, very important because he got out and met new people, and they were great. He still sees them even though he’s working out of his house now, but he still sees the guys he used to work with. And that helped him; it was his life then because he had something. Every night when came home, we had an hour dissertation on what he did for the day, and who did this, and what did that. A lot of laughs, so it was fun, you know, all nice guys. So, I would say that was big for him.
The most important milestones? Okay, the first one was a pretty simple one. They were working on me getting from my chair, to the floor and back, and I was able to rationalize why I’d never able to do this. The physical therapists and the occupational therapists that I was working with were certainly knowledgeable in what people can do. Certainly, they had gone to school, and become very insightful and knowledgeable about this. But, I know me for 33 years at this point, and I know what my body can do because I’ve always been a very physical person. And, it was very easy for me to create a disconnect between what they were telling me was doable and what I could actually do. And so, I was expressing that disconnect in saying “well, you know, I understand you’re telling me something that you learned about in college, but I’m telling you my physiology, my shoulders, my arm length, the seat height, is not going to come together for me.” And then a woman named Minna Hong came in to that therapy session and she has an injury about like mine, at T12. And she was able to, without breaking cadence in her conversation, get out of her chair, onto the floor and right back. And that’s when the story the therapists were telling me went from a fairy tale into a real life story because for Minna Hong, this was her life. This was how she’s living. It’s not something that she read about in a book in college four years ago. And so, that’s what made it real. That was the first milestone for me is that people actually are doing these things, and people who were much smaller, and dare I say “weaker” than me. Viewing myself as a strong, physical person, I couldn’t be outdone by a 90-pound woman who was five years my senior. So, the next milestone I would say is accomplishing that goal of getting from the floor to the wheelchair, which at time I saw as an enormous challenge. When I had this first little taste of success, I was able to fuel my confidence for my next challenge. And as simple as these little things may have been in the beginning, they were the foundation for the confidence that it took to maintain my integrity of self and still be able to fold in this catastrophic disability into a life where I could vigorously pursue my happiness.
During my rehabilitation, one of the milestones was me being able to cath myself and do my bowel program. Because, you know, it's one thing to have somebody do that for you, but not knowing that it's being done to you, it's a whole another ball game. You know, and I think to become independent so that my children didn't have to help me out was very important for me. So, those were my two big milestones, and being able to put my pants on, that was a big deal, you know, being able to put my underwear back on was a big deal. And again, by doing that, I was able to claim my privacy. So, that was a very, those few milestones, and being able to transfer into a car, yeah.
We immediately just started trying little things to see what he could do, and not what he couldn't do; just little things at a time. And, once my son realized he could do these little things, he wanted to do it more and more. At the time of his accident he was 10, he'd ridden his horse for two years, he was eight years old with this horse, wonderful horse. And, that was one of the things that he cried about because he could not ride his horse anymore. I told him he could, my brother, who also rides horses, told him he could ride this horse, we would find a way. And, we just told him well, we have to do one step at a time. First, we need to get you so you can talk again, and you can be able to communicate with us at least a little bit. And, we have to get you so you can sit back up because it had been a while since he even able to sit up and it was just all these little steps and then finally probably after five, six, seven weeks he decided no, he was giving up. So, you know, he doesn't have control over his body, he can't move anything, and you're telling me I can get back on a horse. It's hard for a ten-year-old to see that, but once he saw his horse, that's all that he needed. And, he got out of the facility and I got a hold of the person I needed to get a hold of, and I took the horse to go see him. And, after that day, he decided he wanted to work really hard in physical therapy. And, he was back on his horse within three months after that.
I guess just being able to start doing stuff on my own again. When I first got injured, I really didn’t have any tricep function. So, just being able to do simple things like brush my teeth, and feed myself, and do transfers and shower myself. Just simple things I guess you take for granted every day.
After coming to some of her therapy seasons, I sat and I watched Michelle one day just like a baby, like a weeble-wobble that she couldn't, you know, sit herself up in a chair and she wasn't moving and she was trying to write and it looked like a child in kindergarten had, you know, written the letter. Then as time progressed, I saw Michelle sit straight, she could sit herself up, and she could write, and she could write in cursive just like she could before the accident, and that's when I knew that Michelle was going to be okay, Michelle is going to be okay.
One of the first milestones was being able to learn how to get over an extension cord lying on the ground. My first few hours in the hospital with a wheelchair, I got stuck in the hall, and could not get over a simple extension cord. And it’s only a quarter inch off the ground, but I could not figure out how to get my wheelchair over it. Now, I go over curbs, and I jump over everything, and little holes and it’s not a big deal. But just the simple things of “how do you even turn and go around a corner?” You have to relearn all that.
Probably was being able to sit up in the chair without passing out. They put me on the tilt table, and put it up a few degrees, and the next thing I knew they were waking me up because I would pass out. So, it was pretty huge when I could sit up in my chair for more than a few minutes, you know, at a time. Other milestones—learning how to transfer, that was pretty huge. Slowly on, being able to dress myself, being able to feed myself, things like that. You know, learning how to use some of the adaptive aids that they had. And then later on, learning how to drive again was huge.
First it was coming off the ventilator. So with me, I had pneumonia and I was on the ventilator for about, god knows, like two-and-a-half, maybe three months. So, just coming off the ventilator, working on speech therapy, working on eating and swallowing all over again, that was difficult. For me inpatient wasn’t as great because I was super sick with all kind of other secondary complications, so we can fast forward to day program—it was making it into a manual chair, and being able to transfer, getting in and out of my chair without a Hoyer. And for me, it wasn’t using a sliding board because I did have a skin flap, so it was working on depression transfers.
Well, the first thing was learning balance again because I had absolutely no, like my core was so weak from being in the hospital bed, and building my core back, learning balance. My first therapist, she pushed me around. I got tired of it, so I pushed her back, said, “don’t push me.” But that, and when I would get transferred from my chair to a couch or floor transfers, being able to get from the chair to the floors, that’s a huge milestone. That’s being able to be independent than have to have somebody come and help you up. You could do it on your own, if you fell out of the chair, or you have to get something off the floor, getting dressed in the chair, that’s a lot of stuff from day one. You have somebody’s helping you put your underwear on, you know, figuring out how to do it by yourself, that’s a milestone.
So, when I come in, I met other people in wheelchairs but, you know, they were able to do for themselves. But, I see them, you know, just getting around, you know, having fun. So I started hanging out with them. Just like if nothing was wrong
Generally, when school was over with and people were going on their summer vacations, Bill was scheduled for surgery. I had certain operations done, certain procedures done to his legs to try to help me walk better or sit in a wheelchair longer, but basically to give me more and more mobility.
When he got his license, he was very, very happy to get his license back. After spinal cord injury, the state law, the hardest thing was taking his driver’s license away when he didn’t do a darn thing. It was just an accident, but he had to go through the whole process of doing the driving test again to be able to do that. And then, get into hand controls, selling his beloved truck and getting another vehicle. It helped bring him out of his negative feelings.
Being able to have use of her arms, to be able to drive her wheelchair herself was a big step. I remember that because she wasn’t able for two or three months to move any limbs. And so, to be able to get her muscle use to drive her own wheelchair, that was a big milestone. To be able to, you know, just hold her arms up, or to breathe on her own, take the ventilator off, and be able to breathe on her own, talk, being able to talk again. There’s been a lot over the years. There have been so many milestones and we still have them today. It’s the best part of it, you know, we’re not done.
The biggest milestone probably happened the week that he left. He was able to shift his weight, and get in the wheelchair with a little assistance, but he was able to transfer himself. And he’s mastered it pretty well now, but he kind of—I saw that spark of determination in him of—“I’m going to do this because I want to do this. Not because have to.”
I was able to move myself around, eat better, sit-up more without pain and actually begin to kind of start to live normal. Not, like, walking, but I started wheeling myself around more, and doing different things in a wheelchair that you have to learn here to do on your own—like bathroom and everything, cathing, bowel program, things like that. They get you ready for home.
When I did my first transfer ever, it was, it was overwhelming. It was a moment of, a moment of just comfort-ability and confidence, and, and my confidence started to build there—with a simple transfer to say that things were going to be OK, because I couldn't even do that. So, that's definitely one of, one of the biggest milestones of my life was my first transfer, and from that point on I, I actually felt that things were going to be OK.
First, most important was moving my arm. When I moved my arm, it was my right arm, I was excited about it. “Look, I can move my arm!” And I was able to move my arm pretty quickly. And, it was honestly not until I could move my arm enough to hug my kids that I invited them in, and say “okay, you’ll can come and see me.” And, “I can hug you now.” So, that was probably one of the most important. And then, moving my leg was pretty important. I woke my wife up, “honey, I can move my leg.” She came over and she said, “are you sure you’re able to move your leg and it’s not just a spasm?” I said “no, I’m able to move it.” She goes, “Okay, well move it.” So, I moved it a little bit. I was just a wiggle, I mean it wasn’t much at all. So, she calls the doctor in—or she calls the nurse in and tells the nurse, “he’s able to move his leg.” The nurse says, “are you sure you’re able to move it and it’s not just a spasm?” I said “no, I can move it.” So I moved it for her. She goes, “Oh, my goodness! Let me get the doctor.” So, she calls the doctor. Same question from the doctor, “are you sure it’s not just a spasm?” So, I moved my leg for the doctor, and he began—stuff started coming back for me so fast that the doctor would come in, Dr. Murray, he would come in early in the morning. like 6.30 in the morning, and bang on my door. He would go, “Hey, big beau, what have you got new for me today?” Because I always had stuff new to show him.
Some of it was, I guess, normal activities, which you normally would do on your own. Brushing your teeth, feeding yourself, those were all milestones, and it was just great to be able to do that. To wake up and to still know that you can do things for yourself even though you needed help and assistance for a long time. I was in the hospital for about three months, so I needed a lot of help and a lot of assistance. But those small things were great milestones for me.
Things not occurring as fast as I wanted them to occur. I wanted to be, I wanted to have the strength back in my arms. I wanted my legs to come back, and those things weren’t happening quick enough, and accepting those things, were very hard. Cause you’re on such an emotional, emotional rollercoaster.
You now, it'd be like, just the first time of wanting to go outside. You know, get outside, wanting to go get coffee, or do something. Or, you know, I think that was, cause you know, because there was so much time just in the hospital, just in the room, and just to have that want to be outside, I think was big.
Arms, he wanted to move his arms because his biggest thing was he wanted to hug. He wanted to make sure he could hug the boys. He wanted to hug me, and he just wanted to make sure he could feel something.
Learning how to move my finger, not fingers, just one of them. Then just being able to pick up my arm, being able to actually sit up without someone holding me or falling, that was like the major accomplishment. That was the beginning of the process of me learning, because after that, it was I just had to learn the technique to take care everything. It was just basically strengthening myself. Just the whole movement, gaining movement was the best.
I became determined to do so many things. I would just see people like “how did you start doing that?” “When did you start driving?” “How did you get to live on your own?” “How are you able to pick things up when you are tetraplegic?” And I would just ask people. If I saw someone, I stopped them and asked them “how did you manage that?” And they would tell me, and that would become a goal. And so, one by one, I started just trying to knock them down. So, now I drive, I live alone. I’m normally in a manual chair but, so.
About six months after her accident, we went to a different rehab center, and they had an outpatient area that was strictly for people with spinal cord injuries, and it was set up more like a gym or health club than it was a hospital. And just walking in there you got a totally different feel. The director was a C5-C6 quad himself, he was in a wheelchair, and you just saw people who were physically strong in varying ways who very determined, and who were going about their lives. And they were healthy, and they were laughing and they were joking, and I think we saw that and we thought, "Okay," and Molly saw that. And they worked her hard; she was an athlete and she wanted to be worked hard. And they treated her like the normal teen she felt still was. And I think that after that we felt okay, we can do this.
What can I say? You’re driving. America is all about freedom of the road, independence of the road, so the biggest milestone for me was being able to drive on my own. And I actually was going to deny myself that milestone because I didn’t think I wanted the certain car that I’d bought, or that I had. But at that point, when I finally got into it, it’s like ok, this is something I did when I was able-bodied, at least I’m doing that now. That was the first milestone. The second major milestone was getting work. I was unemployed for 17 months, and being in the house—as you know earlier, I’m little bit of an edgy, fidgety, type A personality person—so with me being able to work, that was able to help me channel my energy to focus on other things too. So those were the two major milestones so far.
I was shot on December 5th. I got to Magee on December 19th, but honestly, I wanted to go home for the day for Christmas. In order to do that, I really had to get a crash course in car transfers. So, I remember two or three days after I was here, being downstairs in the garage learning how to do car transfers. And probably if Christmas wasn’t there as a motivator, maybe, I’m not sure, I wouldn’t have gotten there so quickly. But, that was a great motivator to get going.
Driving. The first time I drove by myself, I bet a lot of people say, and nobody is around me, finally when I’m by myself for the first time, I probably went 100-miles-an-hour. So, making bad decisions. But I was just so excited to be able to do what I wanted, and not have to worry about anything anybody else was going to say. So driving was a big accomplishment. I guess of course staying overnight somewhere by yourself without—at your friend’s house, or just even at my parent’s house. Getting back into a boat, and going fishing because I was big into fishing, still am, was a big accomplishment
Six months, wrist moving. Nine months, ankle started to move. Two years, standing up for myself for the first time. Two-and-a-half years, taking my first steps. Four years, driving. And since then, I’ve just been building on these things, and I can walk for an hour-a-day now. And so not sure I’ll ever necessarily get rid of the chair because my balance isn’t safe enough to keep from being guaranteed I’m not going to fall again. I got hurt by a fall, I don’t want it to happen again, start over, that would be a disaster. So, I may need the chair long term, but the walking is great exercise, and it’s keeping me strong. And I think for a C3-4 person who had an injury as severe as mine, I’m in pretty darn good shape and I feel good. And so it’s, exercise is key, I have been at it nonstop for 10 years.
Seeing home go from lying flat on his back into wheelchair here and being more mobile. There was possibility for improvement and that he could be more independent.
When I was able to sit up without passing out. Because when you first, when you first get a spinal cord injury, you can't sit up without blacking out. So that was an important goal to me, just to be sit up without passing out.
The most important milestone for me was learning to get in the shower by myself. When I came home from the hospital, I would holler, and my mom would give me a hand with whatever it was that I needed help with. And then there was one night where I was ready to get in the shower, I had my clothes off, I was parked by the shower, I was ready and, you know, I said, hollered for mom and she was like, "I can't help you right now." And I—it was probably also when I learned that anger is a good motivator for me—I was like, "Well, fine then." And then I just did it because I wanted to do it, and I was motivated, and of course, that pins you in the end because they know you can do it, so you have to keep doing it for yourself. But that was definitely the biggest milestone for me.
The important milestones for me were number one, surviving the initial hospitalizations. Then getting to rehab and the most vivid milestone was “there are other people like me.” And, until I got to rehab, there weren’t people like me. I was the lone spinal cord injury on an orthopedic floor with a lot of older people with broken hips. I couldn’t identify at all.
The Bluetooth because that gave her an independence she didn't have. There was no Bluetooth, I mean when you think of the continuum in technology, and six years ago there wasn't a Bluetooth, four and-a-half years ago there was, and that allowed her to leave the house unaccompanied, or to be dropped off somewhere—at a community college, without somebody with her at all times, in case she would need something. So, having a cell phone and a Bluetooth gave her independence.
My biggest milestone would be my fingers, because when I first started, everything was very tight. And it started with a wiggle. And from there, it started to progress, and I knew at that point, that’s how the rest of muscles and body were going to work. It’s always going to start with a wiggle here, a wiggle there. I’ve always been a big Lego guy, and I guess I’ve always been a big kid at heart. So after my injury—I hadn’t played with Legos since I was ten—I decided, “You know what, they have all these cool Legos out there, and it’s going to be great way for me to have therapy.” So, I decided, “Why not? Just do it.” And, I starting building and building them, and I got to all these bigger ones, and I was like, “This is awesome now.” And now, we’ve kind of run out of room in parts of my house because of the Legos. It was great development for my fingers.
I think the most important milestone was when she became less dependent on me and became more assertive with her own care. Even though in some ways I felt rejected, I encouraged that behavior because I knew that would be something that would help her to live with her injury.
She was not able to sit up for more than one or two minutes at a time, but then when she was able to sit up for 15 minutes, 20 minutes and then half-an-hour or so, that really was the turning point for me
I think seeing her get out of bed and go to the dining room cafeteria, if you will. And, being coerced to be in a community, and eating communally, and not laying in bed and being isolated. That was significant.
Learning how to put my clothes back on. I mean, just physically being able to bend down, and put your pants on one leg at a time. That was one of my assignments, one of my therapists said, “I want you to dress yourself every day even though you know how to do it. You’ve been in one position for so long, and you really don’t know how to do it. This doesn’t work anymore, and your legs are heavy.” So, just learning how to dress myself was a challenge.
I think it was, “Is he going to be able to transfer?” I think that was my main milestone for him was that I just wanted him to be able to transfer. I understood that he wasn’t going to walk out of here, but I did want to know if he’d be able to get from place to place. And, if not, what I needed to do to make our life easier at home.
Well at first, I was wearing those snap pants. And you all know what those snap pants are; those basketball pants. I hated those things more than anything, but that’s what worked at that time. It was kind of hard to get dressed, you know, you’re so used to getting dressed in a certain way. So, we figured out that those basketball pants were the best for me because I’m not itty-bitty, and so it was just starting over again. You know, I think it was getting dressed, and getting on a mat and moving around.
The stuff that’s important was important after I did it, not before I did it, if that makes any sense? I didn’t think sitting up was going to be as fruitful as it was, but it was. Transferring on my own was incredible. And, probably the biggest thing was driving again, for me that was huge. I’ve had my CDL since I was 18, and so it was just getting back in a vehicle was huge for me.
I was diagnosed as being a quadriplegic; I didn't think I would be able to push a manual chair. So, in all of my practice and therapy, we spent a lot of time in a power chair, and I was thinking, I'm young, I need to really push. So, I motivated myself a lot to be able to push a manual chair.
Meeting other folks at the Rehabilitation Institute of Chicago, whether they were professionals or other patients. I still have friends from those days and good friends. Sharing that experience, having the time to share that acclimation was a very, very good thing. Back in those days there was four—I had three roommates—there were four people in the room, and that was a good process. That gave all of us a chance to talk amongst ourselves at a level that was different than when we would talk the doctors and therapist, and even our family.
Learning how to take a shower, being able to put my own clothes on even though it took about five times as long. Mobility, being able to self-propel myself around the hospital, that was huge.
Honestly, being able to leave the hospital was probably the big piece. While I was there sitting up, learning how to get dressed, or just putting my socks on. You know, all of those things were significant, but paled in comparison to being able to actually get out of a setting that was exclusively about me, back into a setting that was not that. And then trying to figure out or needing to figure out how to thrive in that setting as well.
I remember coming in one day—he had only been in rehab for a short period of time, maybe even just a week or two—and going into the physical therapy room with him. He transferred onto a bed, and he actually sat up, literally sat up in, in like you know, a L-shaped position for the first time. And, I remember him getting a little teary-eyed, he’d probably say, “No,” but I remember him getting a little teary-eyed, and thinking, you know, thinking how cool that felt for him. Now he had sat on the edge of beds and stuff like that before, I don’t know why that was so emotional for him, or why it was so strong, but I just remember thinking that, you know by the way he reacted, that I thought he was going to be able to handle this and get through it.
Getting my physical strength back, just, you know, being able to get out of my wheelchair into the bed, or out of my wheelchair onto the couch. Things like that, because when I first—I don’t know if you know this or not— but when a person goes through a spinal-cord injury, their body is weak. In the beginning, it’s just completely weak, and it takes weeks, and months and, sometimes for some people, over a year, just to start getting their strength back. When I was first injured, basically pulling the sheet up to cover myself, the sheet felt heavy, just the sheet. So, imagine trying to move my body. But as time went on, and I started getting that strength back, I started feeling like myself again.
I would say the biggest one for me that really kind of was my sky-rocketing point I would say, was driving. That was huge for me. You know, definitely being able to dress and the bathing and that's all great and they always love to hear that, but for me it was driving, I mean, that was huge. So, yeah, that was the biggest one, there's no doubt about it.
He was about two-and-a-half years-old. I'm a pretty determined person, and so I would just put him up on a little walker and I would just walk his legs, and walk his legs and walk his legs. And, he got to so he could do that pretty much on his own, you know, and, since he wasn't up on his legs all the time, when he went through a growth spurt, he was collapsing and not able to walk with his walker any more, and it was kind of discouraging for me. At that point, our, the physical therapist that we had at that time kind of gave up on him, and that was a discouragement to me. But, kind of out of character for myself, I asked to change physical therapists. So anyways, we switched to a new therapist, and she had a student working with her, who was just gung-ho. And so, they did electrical muscle stimulation with him, and within a couple week period of one person giving up on him, he was back up and walking with his walker again, and things were moving on. And, I thought, at that time I thought, you know what, you have to advocate for your kid; you want to be realistic, but you also have to advocate for your kid.
For him, the first milestone was to swallow, so that he could take on liquids and not worry about aspirating. That was huge, that was huge. He was injured in October, and I don't think he passed the swallow test for several months?
Watching Nova...sit up. She had been flat on her back for weeks. The rehab wanted her to sit up, they got her propped up on a, on a nice piece of material that had some foam rubber, and so she was in this position where she was up a little bit. And then they said, "Ok c'mon, we want you to sit up." And it actually brought tears to my eyes because my wife, she's a fighter, she's a great person. But she was doing things that I never thought I would ever, ever see her do, or have to do. And the struggle that was involved, the sheer will of making that part of her body move when there was nothing to sustain it—it was, well my wife's a champ. That was a milestone, just watching her get into a position where she could sit up.
All the dressing, being able to get dressed by myself that I worked on with my occupational therapist and the transfers. Those were things that took forever. I was injured back in ’96 when rehab stays were so much longer, and I can still remember the first day when I could cross one leg over the other for the first time. The first I time I was able to get both legs in bed independently—that was really, really hard at first. So all the building up the strength—I never thought we’d be so excited about me being able to do the simple things independently, but independence is really valuable.
First milestone was when one of my neurosurgeons came into my room and saw me sobbing. And he said, "What's wrong?" And I said, "You told me I could go outside today, and the nurse says I have a temperature, and so she won't let me go outside." And he stormed out of the room, and got the nurse in and he said, "you get this woman outside, it will do her more good." So that first time of going out into the fresh air, out of the hospital room, and just, suddenly, the world opened up because I saw flies, and butterflies, and it was spring, and the grass was coming up, and it was almost a new appreciation of life. The second milestone was, of course, being able to be up in a chair. After being on a tilt board, you know, and fainting, because of low blood pressure, etc, and then started to push my chair. Probably my biggest milestone was getting into a van, and sitting behind the driver's wheel and driving. Because then I said, "Aah, independence!" That to me meant I could make it.
I actually met a guy, and he was a quad. And, he was showing me day-to-day things as far as therapy, and, you know, just day-to-day living. And he would explain to me and show me things in a way that I, it would just amaze me to the fact that, it was harder for him to show me as opposed to tell me, but he would go out of his way to show me that these things were accomplish, I mean, were easy to accomplish, and that it wasn't a problem, and don't be afraid to try and fail, and to try again. And, that is one of the things, that helped me, you know, overcome the situation.
When I was able to kind of go back to work part time, a little bit; when I was able to get re-certified with my driver’s license; those were the things that just kind of got me feeling really good about things. I mean, that was the best I think I felt when I first— not the first time because I was scared to death—but the times I got to drive and such, I really liked that.
I think a milestone was when a, when a gentleman that had been in a wheelchair actually came into my room, and he just started talking to me, and, you know, I got to ask him about a hundred questions like, "How do you do this?"—"How do you do that?" And, just seeing that, you know that life doesn't really stop for a disability. And just seeing that made me think that, like, "if he can do it, then I can most definitely do it."
The first I think was being able to feed myself; it was a huge stride in independence. The next was getting reconnected to technology, my career, technology plays very significant role. I studied game design in university, and of course, everything in game design takes place on a computer. So, as soon as I was able to get back on my computer and navigate it on my own, that gave me some power—felt like I would be okay in that sense.
That he could finish school, that was very important to finish his education. And, he learned to drive, learned to do a lot of things on his own, as much as he could, you know. Feed himself—so many little things that, when I think back, that were just, we were thrilled— “I can button my button,” with assistance of a little tool. But all that was little, little things of progress.
The day that he was able to roll himself into the bathroom to pee was a big deal, that was a really big deal. The other milestone was when I saw him struggle on the table mat, and to be able to climb up on a hexagonal-type pad, and he was able to struggle to get up on his knees. I knew that if he was able to get up on his knees, then he’d be able to then get up on his feet.
I mean, being able to transfer independently for the first couple of times was huge. Even now when I make a good transfer it’s like, “ah, that was awesome.” But I use to—my wife lived with me while we were in the hospital, but she works locally, so she’d have to go to work every day. So, during the day at lunchtime to kind of push myself, I would go get lunch by myself. So, I’d have to leave the floor I was on, which that’s not really that big of an adventure. But it was also, looked at like an adventure, go down to the cafeteria and grab my food. And it was a challenge to have to ask people if you need help or try to get everything on your own. And granted, being a guy, I wanted to get all the stuff I can on my own. So, that was one of the things I would do so that I could push myself to new limits. And being at the rehab center, there’s plenty of people around to help you if something really goes wrong. But there was a lot of days that I wouldn’t eat food with ketchup if that was necessary because I wouldn’t have a way to open the packets. I’d be like, “whatever, I got here on my own. That’s really all I worry about.” So, that was a big step for me.
Learning transfers was a huge milestone. Being able to get in and out of bed by myself, that gave me a lot more flexibility. Especially in terms of putting myself to bed at night; that meant that I could stay out later with my friends, or stay up later doing homework, things like that. Driving was a huge milestone. It was really nice to being able to just go where I wanted, when I wanted, and not have to be chauffeured around. And, self-cathing was huge. That gave me way more independence. That allowed me to be away from my mom for more than just a couple hours at a time. I think really the biggest milestones for me were the ones that gave me more independence. Those were the most important things.
It was small things—I mean it was everything from being able to sit up for an extended period of time without getting dizzy. It was feeding myself for the first time without dropping stuff all over me. It was—back then recreation therapy wasn’t what it is now. You weren’t out there water skiing, you weren’t out there playing, in my case, maybe quad rugby or whatever. You were like putting puzzles together and doing things with sticks and possible with your hands and your fingers. And so, those things became really critical to me as I was able to put a puzzle together, as I was able to move things myself. So, it was very, very incremental things—sitting up, feeding myself without dropping something on me, and actually being able to do something with these.
Important milestones, I was 17 so being reacclimated in my school was huge. I was scared out of my mind too because I was a senior in high school, I was a cheerleader, I just was very involved, and I was taken out of that my senior year for two-and-a-half months. And I went back after Christmas break, and when I went back, I was totally different, and I realized how difficult that was. But an important milestone was I approached my cheerleading coach, and said, “can I go back to cheerleading and just do the arm motions?” and she said “yes.” So, I put my uniform on, and my cheerleading friends and I got on a short little bus with a lift, and we went to all the basketball games. And that made me realize at that moment, that milestone, that I could do anything I wanted to do.
When he finally decided he could go back to college, because he was, it was a year-and-a-half or so after coming home before he ever sort of got to that stage. And think that was—now he wants to go back to college, and he decided he was going to major in philosophy, which surprised me, and he did. And then I helped by typing papers for him during that period, so that was interesting to me to type his papers and see what he's doing.
The bowel program of paralyzed people, and I know we're not supposed to say that, but that's what it felt like, paralyzed, not disabled. And my husband needed to help me with that and realized, as not pleasant as it is to talk about, if I didn't do something about that part of this problem, I could die. You have to have that part of your body working. And I know it takes, it infringes on your pride, it infringes on your privacy, it infringes on every part of you that should be sexy, that should be beautiful, that should be whole, self sufficient. But then because of that, I don't go out and have accidents during the day.
To gain independence, not just on the chair, but transferring, moving in and out of the chair to push myself. And when they told me they were going to teach me to fall out of the chair, and I didn’t understand it. “Why do I need to learn to fall out? When it happens, it happens.” Boy, you got to be able to get back in the chair. So, they had me scoot to the very edge of my chair, and I had two physical therapists on either side, and they said, “just fall,” and it was on a mat. And I went to fall forward, and of course, I grabbed around their necks and we fall forward together. And they laughed, and they said, “that’s good, but you have got to learn to do it independently. So, when you fall, catch yourself, put your hand out.” So, to me becoming independent, pushing the chair, activities of daily living was great.
Seeing Nicholas actually be able to move his wheelchair on his own. So that was very exciting because it entails not just the functional ability, but the mental, cognitive capacity to integrate all those movements, which as I said, for a while we weren’t even sure we were going to have that.
I remember, you know, feeding myself— I couldn't do that at first like, it took like, I think, at least a month I wasn't feeding myself, so that was big. And, it was, like, very painful and after, like, three bites using all of these apparatuses, I couldn't do it anymore. But then by the end, I could, you know, eat a meal. It was messy but it was fine.
For a long time, I wasn’t even able to drive my wheelchair, I couldn’t feed myself. And it’s really just basic daily living skills that were the biggest aid to my daily living that I look back as milestones. Like, being able to feed myself, being able to drive, starting to move my left arm—I couldn’t even move my left arm for a long time. And it’s kind of hard to accept, but time heals and really progression goes hand-in-hand with the time it takes, and the effort put in. Also, I got, kind of getting independence was a big milestone and wanting that. Because it’s very easy to depend on your caregiver, and not work toward goals of self-independence, which, in my eyes, that’s that end goal for people who are disabled is gaining as much independence as possible.
I think the most important milestones for Ryan was when he would learn something new about how to live his life in a chair. Because I think before, you know, when we first got here we didn’t really, when we first got to the Shepherd Center, we really didn’t know what that was going to look like. So, it could be something like learning how to transfer in and out of a car was a huge milestone. Because that means that we can leave the hospital and go do something fun. So, that was a really cool thing, and just being able to get dressed on his own at first was a huge thing. You know, it started of smaller and built from there. But yeah, everything kind of in those early days were big milestones because he was learning how to live his life again
Getting off the ventilator was huge, because the swelling went all the way up, and I lost all my arms, and I was on the vent for, like, 4 months. And I was on tube feeding, so getting off the tube feeding, and then breathing on my own was huge. And then getting back my—I mean, it’s all related to function, right? So getting back some supination was gigantic, I didn’t get my wrists back ever, which was disappointing. Being able to sleep all night without turning, that’s another one. Sleeping in a normal bed I guess was another a big milestone.
There were two milestones that really helped me to get to the next point. Step one is realizing that my situation is real, and I have to accept it if I'm going to get better-that's step one. Step two is realizing that OT and PT are there to get better, and that I don't need to resist them and resist their help, they're helping me to get better.
That’s a difficult question because he actually got a bedsore when he was in Memphis. And so, they kept on trying to get him into the rehab program and he couldn’t participate up to the level that he needed it to. So, he had to have the flap surgery. And so, after that the biggest milestone was—he couldn’t talk either. His vocal cords were paralyzed, so he couldn’t speak. We don’t know what his thoughts were even. And so, one of the doctors here that does a lot of the surgeries on the vocal cords and clearing scar tissue out said he thought that he could get him to speak again. And to hear his voice, it was probably over two months, you know that was major, that he was able to speak again. And then he got into the rehab program and started gaining some strength back and stuff like that.
Learning to sit—I mean these are silly little things, but you really feel like you're going through this process of rebirth in a way. You're starting over, and you get to remember it this time—you know, learning to sit, learning to balance and each of these little things were really—were markers that okay, I'm onto the next thing...to get dressed again, using a wheelchair.
I’d say when they took him off the catheter. That was his main goal when he first started, you know, “I’m not doing this for the rest of my life.” And, this might sound…not wearing a diaper, which was the procedure, but he didn’t want that at all. When those two things happened, you could see him progress a little bit faster.
Feeding myself, that was a biggy, and wheeling my own chair, which I never quite got to, and I insisted that I would be wheeling my own chair. And it’s funny, the things you hang onto can also be the things that are holding you back. So for a year, I sat because I was not strong enough to functionally wheel my chair around to be independent. And I finally did give in, and got a power chair, and how it opened up my life. Once I finally accepted my limitations and realized that, “You’re going to a lot more functional once you buy into some of this stuff.” And that really opened up many doors.
Being able to get into a car, even the passenger seat of a car, was really a huge milestone, and that happened. I was at a nursing home in Ohio, and we drove around the country for a couple hours, and I was just so relieved to not be in a hospital or nursing home setting and being out and about again; that was really huge.
Being able to do things myself, like get dressed, be able to get out of bed, into cars, stuff like that. And, now I can do all that myself, and I'd say that was the biggest piece was being able to do everything on my own.