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Q&A: How did you deal with the transition from hospital to home?
Returning Home After a Spinal Cord Injury
After a spinal cord injury, 87.4% of individuals are discharged from hospitals to a private home, 6.7% are discharged to nursing home. It is an important step in the recovery process and is thoroughly planned before discharge.
In preparation for return, a therapist will often visit a patient’s home to take measurements and make recommendations for a successful transition. These may include installing a wheelchair ramp, creating accessible shelves in the kitchen, bathroom, and bedroom, and widening doors to accommodate wheelchairs.
Once the patient returns home, activities of daily living such as bathing and dressing, which were learned in rehabilitation are then applied at home. Many find it takes time to adjust and create new routines. Many felt unprepared to return home and isolated by inaccessible accommodations.
We asked 100 men and women living with spinal cord injury about their transitions from hospital to home. Below are the best answers.
Well, I just wanted to get him out of the rehab as soon as possible, just to give him another beginning and more normalcy to his life. In the meantime, I was looking for another home because I knew our home couldn't be modified. So we brought him home to the house that we were, our original home, and he could only be in the family room, and he had to take bed baths and; it was very small and confining, but it was, anything was better, than being in, you know, the rehab another day. I also was looking for another home that could be made more accessible for him.
Another, like, great obstacle that I faced was, because around the time I got shot—I don't know if you remember the winter of '98-'99—the snow piled up real high that winter, and it was my first winter, you know, in a wheelchair. So, just, you know, not being able to go out, not being able to move, being stuck in a, you know, literally having to flag my friends down to like, "Hey man, you think could push me over there?" And, you know, for people that know me, they know I got a lot of pride. You know, I would never ask anybody for anything. You know, to have to depend on somebody, and have to ask somebody to, you know, to push me, you know, that was kind of humiliating to me. You know, but, at the end of the day, you know, because of my actions I put myself in this situation. So, I needed to man up and, you know, just deal with this.
I actually went up to the doctor and said, "You got to be kidding, she can't go home now." And he looked at me, and I said, "I can't handle this; her blood pressures all over the place; I do not want to be responsible for the death of my wife. You can do that, we need to have more time here, I need to learn more." And they did that for us, they worked real hard with us. They gave me the, they gave me the tools that I needed. It's everything—it's how do you turn their body, how do you position them to get up, how do you hold them so they can sit in an upright position, how do you take their feet and put them over the side of the bed, how do you lift them? There're a thousand things, as a caregiver, that I wasn't prepared for, and I asked to learn them. I struggled with it, some of them I didn't even want to learn, I was scared. I almost could be a nurse right now if I tried.
When Marie left the hospital, she couldn’t return to the home she and her husband had purchased. So, we reconfigured our basement, we had a ground level entrance, so there was no problem with her being able to access it. With the help of friends and family, it was turned into a handicap apartment with a handicap shower, and that’s where she wound up.
Dealing with the transition from hospital to home was kind of easy, I guess. Because my parents had—they would come every evening, and so I was with them so much. As far as like navigating to my house, like people had just come together and made it so accessible. I was kind of going home to a really an apartment, you know, where I would have my own place. It was nice, I enjoyed it. I will say that I was babied in rehab a little bit more and my mom pushed me beyond my limits. Like, I would say, “no, you help me with this.” And she would say, “no, you do it,” and I was like, “but they do it in the hospital.” And I needed that, I needed someone to say “no” to me, and to make me do things because it’s made me be able to do what I can do now.
There was a place that I was eligible for, and that was a place called “Winning Wheels.” It was like, it was a nursing home, it’s where they had physical therapy. And, it was tough at first, because I wanted to go home. And unfortunately though, I couldn’t because my parents’ home was just nowhere near accessible at that point. And who’s going to carry you up and down, up and down flights of stairs? So I had to go someplace else to obtain more physical therapy, to obtain a better independence, you know, self, you know, those…that independence. You know, being able to sit up, transfer, doing the little things so I can become as independent as possible.
I remember being so excited to go home. But at the same time, scared to death because I knew our home was a split level, and he was already having to make modifications to it, which was a dream home to begin with wasn’t a dream home now. We had, I was so excited, we had a little field trip, and went to Target and I go buy a skirt. I buy a skirt what would normally be okay for a walking person is not okay for someone in a chair. So, that caused a little argument. The skirt was to my knees, and if I was standing it would have been okay. But so, it was a nightmare going home. It wasn’t as awesome as I thought it would be, it was quite a culture shock.
That we didn’t do very well. At our home, we had about 20 steps, so he was carried up the steps, which was traumatizing for him. And, he lived in our living room for a week, and then we moved. So, the idea of his life being exposed at the house—although it was just three of us that were there: my brother, my son, and myself—that was not as easy to deal with. So, we weren’t ready for him to come home, which is why we were immediately moving.
I was fortunate enough to have some of my relatives as carpenters re-adjust the doors wider and putting in a ramp in the bathroom, adjusting what I need to. Because I really felt like an infant, because just transferring from the car to the wheelchair, I couldn’t do it. So, it was a hard transition from the little things to the most complicated things—even pushing in a wheelchair to the gravel to the grass, as well as just getting around in the home.
At first I had to have, like, I had to have everybody, you know, help me down the stairs, push me up the ramps, down the ramps, help me into vehicles, you know. I had to have all sorts of help, going to the bathroom, and doing all that stuff. And, that was the hardest part, was kind of being embarrassed around friends at first when they didn't understand everything quite yet.
Before we left Magee, a great tool was they have a room that you can sleep in at night. They roll your child in, and the nurses come in and check, but you’re taught how to do the whole routine. And that is a big lifesaver because it was more clear in my mind how I had to set the room up before he even came home, which was great. So, I had a clearer picture of what was needed.
The best part of Andre coming home was that we had a trial period because the insurance company was unable to have Andre stay here for the entire stay because he had a halo. So, there came a point where the insurance was unable to cover him being here with the halo because he couldn’t make additional advancements. He came back to the house with the halo on, which was a challenge, but it gave me a taste of what I was in for when he came back permanently.
It was just a welcome place. It was familiar smells, familiar food, my pillow, my family, my dog. So, I mean the little things of being able to do everything weren’t important to me as much as being there. I had arrived home, and my goal was to come home, take maybe a year off, go to the beach to mom and dad’s house, and just work on getting better, and more endurance and healthier. And I lasted about six weeks, and I came home and went to work.
That is a little bit a point of stress, if you want to hear about some stress. Coming from the rehab into our home, trying to get all the equipment that you need in your house, and knowing where to get it from, and then ordering equipment. And, you’re in a rehab environment where they have the top of the line equipment. They’re dealing with, you know, the shower chairs, and things that are top of the line. My husband’s a big guy, you know we ordered a shower chair that comes in and looks like it’s going to hold a child, not an adult. And modifying the house so that he could fit, you know, that he could fit comfortably, that he would be okay with everything that we had. We’re very fortunate in the fact that we kind of designed our house when we built it, with a, like, relative living on the first floor, so we were able to accommodate that. But you need a ramp to get into the house; you need the capability to have access to a shower and a bathroom. That’s a little stressful as far as knowing where to go to get all this equipment—don’t get me wrong, the rehab people help a lot—but to walk in your house, and see a shower chair that, like I said, looks like it’s for a child when he’s been sitting in this nice custom shower chair here that looks nice and sturdy, and nice and cushiony, and to see this hard chair sitting there, you know, just panic—“He’s coming home tomorrow. I need something that he’s going to be able to use, and this is going to give him bed sores.” You know, that type of thing, that was a little hard.
My parents loved me a lot—and of course I lost my dad recently, well not recently, last several years—but my dad got in it. You know that’s when it started sinking in that I didn’t like being this way. And so, I had to take that out on somebody, so I didn’t yell at God, I yelled at my dad. So, my dad and I had some very intense moments back then because it was starting to sink in that this was going to last a while and, you know, I didn’t have control of things like I used to.
So when I got home, I had to start from, I kind of had to start from square one and learn some of these basic things all over again—you know, how to get a glass of water, how to get a glass of milk from the refrigerator that had been put in the refrigerator before the personal assistant left. But I had to open the refrigerator, and then how was I going to grab that glass of milk? So they became, in a way, they became challenges that I looked forward to. And rather than fighting it, I said, "Ok, how am I going to do this today?" And that was good; it certainly occupied my time, and it made me feel successful when I accomplished the task that I set forth.
When I first initially came home, the first sight of the house, just seeing my mother, my father, my sister and my brother, it really wasn't appealing to me. It was great to see them, but I was used to being in the hospital with nurses and doctors, and, you know, different other people who were able to provide and help me with the things I needed. But what I did was, basically, I told my parents, my brother, my father, I told them that, the basic things I needed to know, like as far as therapy, as far as stretching myself, as far as doing the daily things, as far as using the bathroom, as far as the times I should take my medicine, the required time to sit up in a chair, the required time that I shouldn't lay in the bed, things that I should do to pass the time, so I wouldn't think, so I wouldn't, you know, sit and get into a submissive state, to where I would be down or stressed or anything like that. You know, I just showed my family , and me and my family grew together, and you know, learned that, you know, I mean it's not so hard, it's a struggle, but it's not so hard, and together we can make it.
I had to do some modifications on the house, kept them to a minimum. I didn’t want to label my house as, “somebody disabled lives there.” I didn’t want people to be able to drive down the street and say, “That’s where the disabled person lives.” So, I only just did some slight modifications to my bathroom. And my bedroom was on the second floor, fortunately for me, I lived in a big house, we converted our dining room into a bedroom; put some French doors on it and what-not. And I didn’t make any other significant changes to the house.
Very hard. I was just married, we had our own house, we had to give that up. When you get home your limitations are exacerbated because now it’s real, is much more real when you get home. You can kind of put things on the back burner, and not really deal with them when you’re in the hospital. Because you’re in the hospital still, and you’re still supposed to be limited, and not feeling your best, and everything. When you get home, that’s when the enormity of everything really hits you.
The hardest part of the transition for me was leaving the bubble of the rehab center. We were surrounded by people that understood and people that could help us. And anytime I had a question about our circumstances, and what this was going to be like, there was someone right outside the door, literally. So, leaving and not having those same resources right at our fingertips was really scary. Because it wasn’t handicap accessible as soon as we went home, it wasn’t perfect, and the world wasn’t set up to be this really easy place to navigate the way it was in rehab. So, trying to figure that out, and deal with my emotions at the same time, because there was more time to, was really difficult when we first got home.
Interestingly enough, my house was a Cape Cod, and I'd completely almost restored the house, or a good part of it. And the only place I could live in the house was on the back, it was kind of like a back family room, off of a back patio that I'd just built. And basically had finished the house, just about, and it was very, very nice, painted, you know, rehabbed the kitchen and we'd done quite a bit of work. And when I get home, this is the only place I could live, I can't go anywhere else, I can't go upstairs, I can't use a shower, I can't get through doorways. And so, I laid in a bed basically on this back porch for a long time, and we did my transfers, I got into a wheelchair. And fortunately because of the deck, they were able to attach a small little elevator, or elevated lift, to get me up and down and out of the house; otherwise, I would have been homebound, really. And then afterwards, we were able to get a house, sell that house and find another house, and get it built so it was, you know, it accommodated me.
It was horrible, I was happy that I was going home, but once I got home, I still couldn’t do anything. And, I still had to be on bedrest after I got home, so I was always laying down at all times, and the nurse would come with IVs for medicine and stuff like that. So, it was still horrible because I was still on bedrest for another maybe three, four months., and so I had to miss school at the same time. And then once I got back to school, try to catch back up with work and do what I—yeah, it was rough.
That was when the stress set in. By that point, Nico looked like someone that came out of Auschwitz; he looked horrible. He was about five-foot-ten, and he weighed under 100 pounds, so he had literally lost his hair, he was just in terrible, terrible shape. He couldn’t speak, he couldn’t breathe on his own, he couldn’t eat, other than liquid injected through his stomach, and the insurance said, “All right, that’s it. You’re not making enough progress, it’s time to go.” And Magee fought with us as much as they could, and we fought as much as we could, and at the end of the day, there was nothing we could do. So that was terribly stressful. But, everyone at Magee had said, “People do get better when they go home.” And, he did.
The hospital to home was interesting, but I did go home after injury and the home wasn’t fully accessible. So, there were some things we had to do to kind of rig it, we call it “Jeremy rigging,” but there were some things we had to do to rig at the beginning. But through some local associations and nonprofits, I guess we could say we got some support and some help. Some guys from the community, they helped build a ramp, and we got some doorways widened, different things like that just to help prepare the way. And it probably took about a couple of months, but we got it to where the house is fully accessible.
Fortunately back then, then it was an era where they would allow overnight trial stays. But, I was able to go home on Saturday afternoon, and come back on Sunday evening, so we were able to try things at home, get a little bit acclimated. To go home again—make some adaptations to the house, even before I was discharged. I was an inpatient here at Marianjoy for over eight months, which is totally unheard of today. So by the time that I was discharged, I felt like I was better equipped to go home because it was kind of a slow process.
Pretty much at the start, nothing was accessible for me. We had six stairs to get into the house, it was kind of an odd house. There was kind of, like, a step to get to the living room, to the rest of the kitchen and the dining room, and all that. My shower was on the second floor, that was another major obstacle. You know, little by little, we started making changes to make my surroundings a lot more accessible for myself. Moved the shower downstairs, we had a lift first, now we got a ramp to get in and out of the house. Now I'm able to get in and go throughout the whole first floor as I please, which I have everything that I need just there.
I was still in my powerchair, able to stand and walk with the assistance of a walker at that point. They didn’t want me doing a whole lot of it at home without a physical therapist and stuff there. Worker’s compensation again, they put me in apartment that was fully handicapped accessible. It had a lift and everything. In the apartment, I had a home built, fully handicap accessible. Worker’s compensation again did that for me also. So, they really made the transition to home very easy. Being in the apartments here at Shepherd helped for—I think I was in the apartments here for a month—that helped transition me back into the world.
You have a lot of daily reminders of your past life, and of things you can no longer do. So for me it was, you know, seeing some of my old sports gear, and old pictures and videotapes of past gymnastics meets. So, it's like, it's a little bit of a shell shock when you first get home, and try to just kind of gather yourself, and just used to being back home and out of the hospital and if you an issue, you're kind of on your own. You can make a phone call, but if you hit the ground here at home there's not five therapists to get you back up there, it's me and my mom. So it's definitely a crash course in being on your own, and you also have to deal with the whole accepting and understanding and dealing with the injury, which you didn't really have to face in the hospital. When you see all of your old stuff, and your old friends and when all of the family comes over and say," you're doing a great job," you know, they leave and you're still like, "nothing's changed, I'm still in a chair."
Transitioning from a hospital to home is very tricky. I think when you first come to the hospital, you go, "Oh my God, I can't believe this is my home for a while,” and then you get acclimated to it. Everybody knows your business, and then at some juncture, you find comfort within the fact that everybody knows your business. And I think I had my first primal cry when I actually went home because that's when reality sets in. I always tell people, you know, the reality of this injury hits you when you take this back home. Even though the house may not have changed, but the way you station yourself within that environment completely changes. So, it was the second catastrophic event I think is when you take this home.
That was probably the worst, the worst day was actually going home. The very first day, getting back to the house, we had the ramps installed so I was able to get in. But just being at home, and looking around, I’m a big fix-it person, looking at my walls that I had painted before, I’m like, “I can never do any of this again.” So, that was probably the worst day of my injury because when you’re in rehab you get used to the facility that is built for you—doors that are wide enough, bathrooms that you can roll into, And then I got home, and I just started looking around and “I can’t change a light bulb.” “I can’t paint my walls.” “I can’t tear down a wall.” “I can’t fix my bathroom.” So, that was really my lowest point was the first day back. And then as time went on I learned that I can do a lot of things, that I didn’t know on that first day but that was probably my hardest day.
Going home was really hard. And, I think that I thought it was going to be this big, happy thing. I was going to slide back into my normal routine, and be with my friends, and go back to school and it was all going to be fine. And, I completely under estimated the challenge that it was going to be. And, the hardest part was that I got home and there were all these things that were different that I didn’t even think of. I remember one of the first nights I was home, everyone got up to clear the table, and I was like, “Oh my God, I can’t even clear the table, I can’t help myself, I can’t help anyone else.” I felt like a really big burden, especially to my family. I hadn’t anticipated all the small things like that, that were going to make me feel that way. Just things being moved in the house and everything set up differently. I didn’t anticipate everything was going to be different, and that was really hard getting back into that. My room got totally redone. There was an elevator put in my house and it goes right up into my room. That was just great, but when I got back all my stuff had been moved around, and the carpet was taken out and it looked different. My dad said, “Now, how do you want the walls painted?” And I was like, “The exact same.” I wanted everything as close to it as was, as it could be. But, there was no way to recreate how everything was before.
One of the things that they taught in the hospital was: do not change anything at home until you get home and see what you really need to change. So many people were so anxious to help us, so they said, “oh, we will redo your house and get you all set up.” But wisely, they told me in rehab not to do that, but wait until you get home and try things out. Because so many people have the experience of having their house redone, and then show up and not be able to utilize what they had just done. So, I came home with the house being the way it had normally been, and then learned what it was like to get through entrance way, and how to get up a step, and where do we need a ramp, and what would be easier for me here. And we took notes on all of that, and then sat down with an architect, and with a builder and said, “here is what we need.” And then they designed the house addition and the changes to fit what I needed. And you know, I lived in the living room for four months while they redid everything, and you learn how to adapt to those kind of things, but it was well worth it in the end.
That was scary, and I mean I did stupid things. I mean during one day when I sat down on my cushion of my chair, and I couldn’t feel anything on my bottom, and realized that I didn’t even have my cushion on the chair. I was sitting on the hard metal for two hours and that almost caused a skin ulcer down there. And just stupid stuff that I didn’t think I was prepared, Shepherd thought I was prepared, but for the most part, you learn as you go and I’m still learning. I’m still changing my care when I come up with a better idea, it’s like I change it out.
My parents live in a really great community that really rallied around us. And they—this was sort of before extreme home makeover and all that used to be on air—and they did our own little mini extreme home makeover and renovated our house, my room and bathroom. And we already had a ranch, so there weren't a ton of accommodations to make, but I mean, we got a whole new bathroom, and a door, an exterior door added to my room so I could get out easily on the ramps and all that, which was great. But also, before I got out of Children's, we had gone back to the middle school with recreational therapists, and kind of walked through things. And so, I got out of the hospital on October 30th and I went back to school on like November first or whatever that Monday was.
When I came home, I came home with my mother and my brother. My brother was young, he was like, 13, he didn't really understand. My mother is kind of a small lady, and I couldn't do anything for myself. So I was there for about a year-and-a-half, then I decided I needed to go to a nursing home, somewhere I could get my independence; they could work with me and hopefully I'd get better. So I eventually went to a nursing home after a year-and-a-half at home with my family. And then, by the blessing of God, I met my wife, my future wife. She was visiting her father at the nursing home, and from that point on when I met her, we dated for, like, six months and then she said, "Well I think we got to find an apartment." So me and her found an apartment that was wheelchair accessible, and from that point on, we've been together for, like, 13 years.
At first those last few days at the hospital I’m like “yes, I can’t wait to go home, it’s time.” But when I got home, I kind of felt like the discharge process left me—it’s like they say, “okay, great, you guys got it, see you later, bye, take care.” And we were like, “okay, yeah you got to train them, but our house isn’t the hospital, it’s not modified for a wheelchair user.” That was a hard part. I felt isolated at that point because I’m not back in “the community” so to speak, not around other wheelies, not in a comfort zone. The visits that you normally get in the hospital, everyone is coming to see you, they slow down when you get home, so you start to feel like “has everyone forgotten me?” you know. And I got very depressed when I got home, not for lack of people trying to help me, but I just got depressed. And I felt like I was just out there by myself and I started wishing I didn’t survive, you know? It just got tough.
Petrified. I was trained at Magee to take care of the things that she needed at home. I never intended to train as a nurse, I never wanted to be a nurse and all the sudden I’m a nurse. With time, you get very confident in doing these things, but initially—it’s terrifying.
Worker’s comp actually built us a house. They did. And we, our home is fully – when they were in the building process it was fully accessible. They made our ceilings to where they were strong enough for a Hoyer lift. Our doorways are wide enough for his wheelchair. The countertops are low enough, so, if he was in his chair he could reach the countertops. Our bathroom is fully accessible. It’s just completely accessible.
So, I transferred from the Savannah campus of SCAD to the Atlanta campus. And being in the Shepherd Center when I originally came to Atlanta, I didn’t have a place to live outside of the Shepherd Center. So, we considered whether I would stay in the dorms or whether I would find an apartment. Fortunately, I was able to find an apartment that was very close to the SCAD campus. And my primary concern at the time was just “how will I go to school?” “How will I come back?” And being in a place that was so close to the campus, it definitely helped. As for the actual living in the apartment, there was some modification that needed to take place. Like, making sure I would be able to get in and out of the apartment on my own, whether I would be able to navigate within the apartment, just little details. But, actually a lot less complex than I was fearing it would be.
That was a tough transition. You know, once something like this happens, you’re kind of a square peg trying to fit in a round hole, so you have to make a square opening. And you know, there’s no book, there’s no guideline on how to do that because everybody’s situation is going to be different. In my case I have two children, “how am I going to raise these boys?” “How am I going to drive them around, do carpool?” And I was fortunate, I had—I left with a lot of skills that enabled me to do that.
I think the hardest part was really learning that the world is not as accessible as we would like to think, even in my own home that I was going to. Just being frustrated about not being able to run down the stairs really fast or go to the store, I really didn't want to face that. Here at Schwab it was like everything was right here that I needed, I didn't have to think about stores or stairs. So that was what was kind of the scariest thing, and frustrating to go home, and everything wasn't just how I needed it to be.
I was so happy to get the heck out of Dodge. I hated the hospital, I hated everything about it. I hated the rehab, I hated, like, I wanted to be in my home, being able to smell my smells, being able to eat my mom’s food, being able to go out and sit in the yard, like lay in the sun, just be home. My recovery went like light speed, especially, like my mental recovery, getting out of the hospital. I hated the hospital; I hated the hospital, every aspect. I mean, it saved my life, right, but I just hated it.
Well, it was better for me than most, because—again, I have to refer back, I’m a home builder, built my own home—I thought I was building a future in-law suite, it wasn’t. I have a two story home, I’ve done well for myself, I think; and I built what I thought was going to be an in-law suite. So, the transition was really, really smooth, and what little things weren’t there, like I think, you know, we have one door to go to a bathroom; we made it into a double door. You know, my co-workers were over there, knocked it in, done. Transition—put in a ramp—it was all done for me. I hear stories about people have holes cut in their walls to get to bathrooms; I’ve heard some ugly stuff out there. But, you know, I was in the right business, and I had the right people around me.
Initially, I sat around a lot, and I set my life up to where it was somewhat in stages. But I had been working out of town, so it took me a little while to get from where I was back to my hometown, and then into an apartment, and then ultimately into another house. I mean, the house that I owned, well, when I got hurt, when I returned I couldn’t get into, and there was no way to modify it to the degree that allowed me access. I think one of the things that helped me the most when I got home ultimately, was I went back to work very quickly, I had a financial responsibility relative to my children, and I needed to just get back from off of disability into a full-time wage again. And so, I think that on one hand was great for me because it just forced to sort of deal with getting in and out of the car, getting around town, getting dressed for work in the morning. But at the expense of being able to be selfish and really focused on my physical rehabilitation.
It was very difficult for me at least because, you know, I was still 17-years-old. I still wanted to live like a 17-year-old, but you know, being dependent, you have to depend on other people. And you can’t always do everything you want to do, and it has to be a give and take for everyone. And I feel like in the beginning, it was kind of more me mentally, but I felt like nobody accepted me, but that was all in my head. If you accept yourself, it makes it a lot easier for other people to accept you.
I dealt with the transition from hospital to home miserably in the first few weeks. I’m a very strong willed, hard-headed person, and when I believe in something, I believe in it. And I believed that my situation required more physical therapy, more occupational therapy and that I was being shortchanged by our institution of healthcare and health insurance. And I went home, and I sat down and stayed there. I didn’t really do anything for the first two weeks. If I dropped something on the floor, rather than challenging myself to pick it up, I just left it there knowing that somebody would come home later. My neighbor came over during these first couple of weeks ,and he could see that I wasn’t myself. He said, “you know, life goes on,” and I wanted to slap him in the face. I really did because your life goes on, my life has pressed pause. When I was in the rehab environment, I was surrounded by people who understood what I was going through, understood what I needed to be able to do to take good care of myself, and they understood how it all came together. And I was immediately extracted from that environment because the time frame that ran out. And I did, I felt it all of a sudden, alone with it. I’ve since then come to express it as a culture shock. I had gone from being an able bodied, average Joe, to this new culture of disability that uses different words, has different practices, different ways of taking care of themselves. And then I suddenly, it was like going to China, learning Chinese and that you have to be Chinese from now on. Sorry China! But you have to be Chinese from now on, and then you come back to Atlanta and say, “okay, now be Chinese.” It just didn’t feel like a fit, and so that was very difficult for me. So, I needed to learn how to be disabled in my own home, in my own life. It was very much a double-edged sword. I wanted to come home where things were normal but I got there and found out that normal was different.
For the first few months maybe, I couldn't get in and out of the house without actually having to pay somebody to take me up and down the stairs. But eventually, through UIC, they had this program, like, it's a child service, and they ended up supplying me with a lift, and the lift worked out perfectly, it helped me get back and forth to school without any problems. And the inside of the house didn't really need many modifications.
There were a lot of physical adjustments, obviously. Our house needed to be rehabbed in a pretty quick turnaround time, so that was difficult. Just a lot of the day-to-day routines had to be changed, even where she ate at the table; she couldn't eat there anymore because her wheelchair wouldn't fit. So, you know, we had to rearrange where we ate when we had dinner. She needed all her food cut. The routines that we were used to doing on a daily basis there just had to be several little changes to them.
When you’re at the hospital, the emphasis is on directing your care, at least doing the things you can’t do. Because I was very sick when I was in the hospital—continued episodes of bladder infections and autonomic dysreflexia and dehydration—so, the good news is that I got all those patient education classes that they require you to go to, all the reading you’re supposed to do. So, the good news was that we had a good base, knowledge, skills to problem solve. And, the second piece was that we also spent a lot of time on the phone calling the outpatient nurse educator at the hospital where I did my rehab was how we made it through those. And, the other good news is that I did have home health aides in the beginning—and I had very mixed feelings about having home health aides—and they were also very, very, very helpful. They had a good knowledge base, they had problem solving skills, and they were very helpful almost like fitting-in like part of the family.
So we brought in some of the things, we brought in the Scrabble board because that was his favorite game; we brought in some things he could do with his friends when they came over. So, it was like an adult room that wasn't a hospital room, yet it wasn't a children's room any more for him to come home to. So we made it into an adult, and we made it into a celebration when he came home.
I think I dealt with the transition going home really well, because all I wanted to do since I got to Marianjoy was get home. Not because it was a bad place, just there’s no place like home. So, when you want something that bad, I think it makes it easier. So it was a pretty nice, it was a much needed transfer, and everything. It couldn’t have gone better. My house just needed a ramp put in, the house was ready to go. I have a ranch, so that worked out real nice.