A Portrait of a Spinal Cord Injury
The next Monday the unit was abuzz with lots of activity after a humdrum weekend. Quite a few patients had been leaving on weekends to be with family and friends and also to begin acclimating themselves to the outside world. I was nowhere near that stage of rehabilitation so the weekend was especially boring because my visitors had decreased significantly. Only those closest to me continued to visit on a regular basis and many of them were finding it difficult to get away from their busy schedules. Everyone had their own lives to get on with and I understood that but I sure appreciated the time and support they provided in those desperate times in intensive care. I was now much better and needed to begin the arduous task of getting my own life back together. Although I was anxious about it, I felt secure with the support of the rehab staff and my newfound friends. I also knew the rehab environment was the best place to begin the healing process and prepare for a new and different life.
Even though the weekend had been boring it gave me a chance to reflect on everything that had happened and also allowed me time to psych myself up for the week ahead. Since it was now apparent that my injury was incomplete, meaning I would not be completely paralyzed below the level of injury, I was in a position to “save face,” as I called it, and regain enough functional ability to have a good quality of life. Saving some dignity was the one thought that I agonized over for so long during the first few months when things were pretty bleak and now the door had been opened and I knew I had to take advantage of it.
I was ready for the challenge when Keith came in early Monday morning and helped me out of bed. Since it was midsummer, I would just wear shorts to bed which was fine for therapy also. But sometimes my occupational therapist would be there and make me get undressed and then dressed again just for practice. There was no way I could wear a shirt over the halo so she would have me put on my sweats or attempt a pair of jeans, only to have to take them off again since I preferred the shorts for therapy. Socks were the most difficult—except for shoes, that is, which were near impossible. I definitely was unable to tie them. I thought the dressing thing was pretty ridiculous but I complied with it anyway in order to appease her. I knew it was necessary and was thankful I only had to do it about twice a week. Anyway, with Keith’s help on the other days, I was one of the first patients in the activity room for breakfast.
On this particular morning, another quad was sitting at the table smoking a cigarette. The cigarette was wedged between the tines of his adaptive fork so he could hold onto it. I thought it was pretty inventive. His injury looked complete since he was barely able to raise the fork to his mouth to smoke. I had seen him down in therapy before and he was usually looking very depressed just like he was that morning. They always left him in his wheelchair and I thought he looked pretty pathetic sitting there with weights holding his arms down. His therapist would occasionally prod him to lift them for exercise but after managing only one or two reps, his spasms would take over prompting him to yell for help. He always appeared to be in a full body spasm and it forced his head and shoulders back and his chin to his chest, the awkward position wrinkling up the skin on the front and sides of his neck. His low back would be arched inward in a sort of lordotic position also, and it looked like his face was in spasm too because the corners of his mouth were pulled back to the point where he had difficulty wrapping his lips around the cigarette. I think he was just grimacing in pain but it reminded me of a person fighting off major G-forces, like an astronaut in a rocket ship at takeoff. Poor guy, I thought. But he did look proud at being able to smoke that cigarette independently.
Rehab was seeming more and more like a battleground to me, where just the ability to have a cigarette brought a welcome break from the war. At least it appeared to bring a little bit of joy. This fellow seemed like a changed person away from therapy and really seemed to be enjoying that smoke as he sat across the table in silence. When I asked him about it he told me he had never smoked before. It seemed like a lot of people had taken up the habit, including myself on occasion, just to be part of the gang. He had his tray sitting in front of him with all the containers unopened waiting for a nurse to assist him. I was so glad I did not have to wait for assistance anymore and I reached over and proudly opened some of the containers for him, always wanting to help those less fortunate than me if possible. “Thanks,” was all he could manage. It looked like even speaking was difficult for him judging by the way he grimaced. “What’s your name?” I finally asked. “Robert,” was his auspicious but labored reply. Then he took a last drag of the cigarette which had already burned down to the butt. Keith rolled up beside him, his own cigarette dangling from his mouth and grabbed the fork and put the butt out on the wheel of his chair. I don’t think Robert was coping very well and it appeared a lot of his behavior was attention-seeking. The nurses, as well as the therapists, must have suspected the same because they would often set him up with an exercise or activity and leave him alone as long as possible. They were trying to break him of his perceived need of constant attention. I did not really see it as being cruel but simply as a means to help him overcome his fears.
After breakfast, it was on to therapy again. There were quite a few patients gathered at the elevator when the door opened. We were all in a pretty good mood, being the ones that had some independence, and decided to see how many chairs we could cram on the elevator just for fun. I’m not sure how many we got on since I was facing the back wall but when the door opened on the first floor no one could get out. I tried to back up a little but all of the chairs just clanged back and forth. We all started laughing when the elevator doors closed again sending us back up to the unit. I finally jostled my way sideways by the time the doors opened again and the funny look from the people at the nurses station was hilarious when they turned to see the packed elevator. Before they could say anything the doors closed again, opening a couple of floors down where the same scene was repeated. I think we rode the elevator up and down for almost twenty minutes before a transporter and nurse assisted us in getting the chairs unlocked, putting an end to our silly prank. We were still laughing when we all rolled into therapy together, much to the curiosity of the therapists. Little things like that really helped sustain our motivation and good humor.
After my usual routine I wheeled over to Landon who was on a mat with his body stretching the entire length. “Hey Landon.” “What’s up man!” he retorted, obviously in a good mood. “Not you,” I answered back. “I thought you were coming up to rehab.” “Man, they tell me this and they tell me that. Promises, promises,” he fretted. “You’ll be up there soon,” I assured him. Robert was sitting nearby yelling at the nurses to help him reposition his body. He was in his usual G-force spasmodic posture and it was difficult not to laugh, at the risk of being cruel, but his behavior was getting on everyone’s nerves. Landon thundered, “Hey man, why don’t you just shut up!” “Yeah, you try and be in this position man,” was Robert’s response. “You try and be in my position,” Landon lashed back, struggling to turn his head enough to see him. I sat there watching in surprise as the two continued tossing barbs back and forth. I guess it was a little comical seeing two paralyzed men fighting. “You don’t have to whine so much spasto,” Landon barked. “You’re not in any pain.” “Landon! You be nice,” Mary snickered. “Well, look at him. Spasto,” he yelled again. “At least I’m not the Jolly Green Giant,” Robert jabbed back, toning it down a bit. I could not help but laugh as Landon kept on razzing him. “Spasto, spasto,” he teased. Finally Mary stepped in, “All right, you guys. That’s enough.” But the name was out there and caught on since all of the guys heard them yelling. Thereafter Robert was known as the rather undesirable—but very appropriate—Spasto. It was not very nice but sometimes that’s the way things were in therapy. Anything to get you a little mad or fired up usually made you work harder.
The physical activity was so difficult and frustrating that sometimes the tension needed to be broken and eventually we all acquired nicknames. I was used to it because most of my life I had been called by various nicknames. I was “Bones” in therapy, the nickname Mary pinned on me; Keith was “Iron Man” because he would often beat on his covered chest, the noise of his rigid back brace resounding throughout the room; Lenny was known as “Freakpig” because of his long hair and goatee and also because of his uninhibited chauvinist comments that often angered the nurses; Scotty was simply “Scotty,” which seemed natural since he was from Great Britain. I can’t remember anyone using his real name. Landon simply went by “L. T.” Then there was “Spasto,” with his uncontrolled spasticity; Timmy was “The Kid,” because he was young and wore a cowboy hat and was always acting a little wild and adventuresome in his wheelchair. He was the epitome of an Old West character except wheelchair-bound. Ellie was simply Ellie, probably because she was the only female on the unit. That was pretty much the group although sometimes a couple of others would join us on occasion.
There was another guy we called “Madman,” but he had already been discharged from the unit. He was another of Mary’s patients and we called him that because he always threatened her when she would stretch out his arms. Mary took it humorously but he sounded serious when he would angrily tell her that he had “a bullet with her name on it.” He was a Black guy and made no secret of his underworld dealings, though I think there was another bullet which had his name on it and that effectively put him out of commission. His story was sketchy at best but the resulting quadriplegia was not. The bullet he took narrowly missed his heart and lodged in his upper thoracic area, rendering him paralyzed from the chest down. His shoulders had become nearly frozen from immobility, much like mine had become.
Stretching the arms above the head was a very painful experience and I also said some pretty mean things to Mary when she stretched mine up after they had been locked down so long. The paralysis had caused my pectoral muscles (pecs) to become extremely tight and I cursed her when she cranked them up because I was able to do nothing else to stop her. The big halo vest did not help improve my flexibility either since it was so restrictive. “Mary! You crank that arm up one more inch and I will kill you! I blasted in pain and anger, absolutely helpless to do anything about it. But it had to be done and I got through it, the result being full passive range of motion for my arms. Therapists did the kinds of things that your parents might do—you know, the “This is for your own good” and “You will thank me later” type of stuff. And they were right. After I got through the often painful and incredibly frustrating activities, I was glad they had taken the liberties to do them.
The occupational therapists did the same kinds of things. Nancy made me do some things that made me incredibly angry. Probably my most hated favorite was trying to push up the ramp. She would take me to a very long indoor incline at the end of the corridor in the basement and with the same relentlessness she used to improve my sitting balance, she would leave me at the bottom and simply say “Push” or “Go.” The first couple of times I only tried one push and then quit. It was so difficult and painful to my upper body that we literally ended up sitting at the bottom of the ramp for entire sessions. It was like a Mexican standoff, her with her arms crossed and tapping one foot and me just sitting there with my arms on my lap and refusing to budge an inch.
Eventually I got irritated and angry enough to push about once every five or ten minutes. At least she would quickly wedge her foot under the back tire of my wheelchair so I would not lose any ground as I slowly crept up the ramp. It took a long time and was an angry and grueling effort but after a couple of weeks I was able to make it to the top during one session. When I finally did, the prize for my efforts was to go outside and learn how to go down a ramp. Or in this case, down the big hill in front of the hospital.
Going down a hill toward a busy street was very scary at first—until I learned how to effectively use the wheelchair brakes, that is. She put brake extenders on my chair which made it easy for me to reach them and by using the brakes as controls it was easy to control my speed and direction. It was actually a lot of fun when I got the hang of it! It was also great getting outside even if it was still on the hospital grounds. I grew to love Nancy as well as Mary and there seemed to be a strong bond which developed between us. We all had to put up with a lot of frustrations but it was always a mutually rewarding experience, especially when it was a success story. That summer produced an exceptional number of success stories on our unit. The ultimate success was gaining the ability to walk again and I hoped to eventually be included in that group.
The first person I observed walking again had been Scotty, and shaky legs and all, he proved to be quite good at it. Like everyone who relearned to ambulate, he started with a walker and then used a four-pronged (quad) cane, and finally graduated to a straight cane. Having upper body strength was a huge bonus, especially if your legs had little movement. Timmy succeeded at walking even though he had no leg movement at all. His legs were completely paralyzed but his upper body was so strong he was able to walk with long leg braces, literally carrying his lower half as he went. Keith was able to accomplish the same feat with his strength but as Mary explained, their walking required so much energy they would probably choose to use a wheelchair most of the time.
My first roommate, Chuck, was walking before he was discharged too. He was fortunate to have good leg strength because he was not able to hold anything with his nonfunctional, swollen hands. The same was true of Ellie. She was a great success story, having survived that terrible auto accident that took her husband and left her seriously injured and comatose. Although she had good hand movement, she would not have been able to use a walking device for a long time since her shoulders were so banged up. Since she had a halo, I was really surprised when she showed me her normal finger movement. Her broken neck must not have damaged her cord much and I think most of her leg paralysis was probably due to the initial spinal shock which eventually dissipates. It was amazing to see how many individuals had just enough in different areas of their body to be successful at walking.
My roommate Mike was the only incomplete quad other than myself and he was the only one who could ambulate. He could walk even though his hands remained paralyzed. He often used a walker but was practicing without any device during therapy because he had no grip. He, Ellie, and Scotty were the functional walkers because they would probably never have to use a wheelchair again. I was very happy for them, especially for Ellie, maybe because I was there when she took her first steps in therapy. She had this huge smile, as did everyone in the room, as she strode across “the dance floor” as it was known. You could just feel how much love and compassion there was in the room at that moment when she succeeded. She had tears of joy in her eyes and looked so relieved. The accident left her alone with four children and I don’t know what she would have done if she could not regain her abilities. But then again, I did not know what I was going to do either. We were all in the same boat struggling to go upstream with a broken paddle. A life of dependence was unthinkable so the universal hope was that we would not have to worry about being dependent after rehab. That was the whole purpose of rehabilitation—to learn to be independent. You were successful if you achieved it but most patients’ definition of success was to walk, including my own. It was difficult to settle for anything less, especially if you were getting some movement below your level of injury.
The next day in therapy I continued to badger Mary to stand me up. “You still have very little trunk control Steve,” she reminded me and then started naming off all of the muscles that were needed for ambulation, of which I had few. “I just don’t think you’re ready yet,” she said. I think I had already asked her a dozen times or more and she always came up with a reason not to, probably because she did not think I could handle the disappointment, I presume.
That afternoon my dad came down to therapy to observe. I told him how well I was doing and then looked over at Mary and shouted so she could hear me, “But my therapist won’t stand me up!” I said it almost kiddingly but Dad, wanting to help, asserted, “I’ll help you stand up.” Mary had to give in after that and came over to finally give me a shot at it. After a review of strategy, I wiggled to the edge of the chair and became totally focused. I figured I had one chance and had to make the most of it. Dad grabbed one arm as Mary positioned herself in front of me to block my knees. She got a firm grip on the gait belt, and one, two, three—they both pulled hard. It took everything I had but I was able to straighten my legs and trunk into a standing position. The struggle exerted so much pressure that I broke tremendous wind that echoed clear across the therapy room. I was really embarrassed and excused myself but thankfully good ol’ Dad put me at ease by saying, “Boy, you must have been needing to do that for a long time.” We all laughed. Standing tall, I felt like I was a giant towering above the therapy room. It had been almost three months since I had stood up! Having only had a wheelchair perspective for so long, it was dizzying at how tall I was feeling. It certainly felt strange, especially with the restrictive halo which prevented head movement. I was extremely proud as I scanned the therapy room. It looked very different from a standing perspective. After a couple of minutes I had to sit back down because I could feel my legs weakening fast. They lowered me to the chair just as they completely gave out and I plopped into the chair with a light thud. But what an incredible sense of satisfaction! It felt so good to stand again!
After resting for a while, Mary came back over and surprised me when she asked if I was ready to try the parallel bars. I was not too sure about it but responded, “Let’s do it.” I was on a roll so why not, I figured. She positioned me at the end of the bars and helped me back up to a standing position while Dad looked on. Holding on to each bar for balance, I looked up and the end appeared to be a long way off even though it was only about eight feet. It was so close but it looked so far! Mary held onto the back of my belt as I took a giant step forward with my right leg. And apparently I had so much pent-up energy and emotion that I cruised the entire length of the bars in no time, collapsing at the end from complete exhaustion.
Mary was astounded! She yelled to the others in the room, “Steve just walked all the way down the parallel bars! I can’t believe it!” she added, looking at me wide-eyed. Everyone in the room started clapping as I sat there trying to catch my breath, a huge smile pasted on my face. I was panting like I had just finished the 100 yard dash! I couldn’t believe it either but I did it! I beat the odds and accomplished the impossible. For months everyone had said I would never walk again. The doctors gave me absolutely no chance and none of the nurses or therapists thought I would ever do it either. But I did do it. Success, it felt so good. It was only a short distance but it was a huge accomplishment! I wheeled back to the elevators with a feeling I can barely describe. It was the feeling that could only come from beating insurmountable odds and the satisfaction of proving everyone wrong. I was giddy with delight and wanted to tell everyone!
Back on the unit, a new patient was being admitted with a lot of fanfare. It was “L.T.” finally and they put him in the large room near the nurses’ station. That room was actually designed to hold four patients but it only had one other occupant—and therefore plenty of room for his entourage. After he was settled in I went to visit. It was a Friday night and the room was still pretty packed with visitors but I rolled in anyway because I wanted to announce the good news. But it was way too crowded and I felt like I was imposing. I wanted to tell someone, though, so I turned to go out and tell the nurses but his mother stopped me at the door to talk. “Hello, I am Landon’s mother,” she said. “ Do you know my son?” “Yes, we met in therapy. My name is Steve,” I told her. “Can you walk?” she questioned. How ironic that was to me. The first person to ask me such a question and I had just accomplished the near impossible feat in therapy. She was very happy to hear what I had to say and turned to encourage her son. “Landon, your friend from therapy is here,” she called out to him. “He can walk! You see, there is hope for you.” She was excited about rehabilitation and was being very positive, hoping it would help her son walk again. It was every parent’s hope but I knew how slim his chances were. There was always a chance though so I told her, “You never know.” He strained to look over and see who it was and then invited me over. “Oh yeah man, come on in. You can walk man? That’s great! I didn’t know you could.” “Me neither,” was all I could say. He then introduced the people around him but seemed to be struggling with trying to remember some of their names. Everyone started laughing and the introductions were quickly forgotten.
There were a lot of people I did not recognize, probably people associated with the school or some friends and relatives but there was one player I did recognize. It was Joe Barry Carroll from Purdue. I looked up and his head looked so tiny since he was as tall as the television sets which hung near the ceiling. I remembered seeing him play a couple of years ago as one of the biggest centers in the nation and I went over to shake his hand. It completely enveloped mine as we said hello. He appeared even taller than 7’1” because I was in a wheelchair. Everyone looked taller from that level.
I sat and listened for a while and then recognized someone talking to a nurse in the hall. As he turned to enter the room there was no doubt who it was—Coach Bobby Knight. I was kind of awestruck to see him in person. He had a very concerned look on his face and came off as very soft-spoken as I observed him interact with L.T. It was a sharp contrast to what I had always heard because I saw how very compassionate he actually could be. The general public could only see his tough disciplinarian approach to coaching but I was able to see a very different side of him. I shook his hand also, taking advantage of the chance to meet celebrities and he gave me that same compassionate look as he placed his hand on my shoulder. Thereafter, whenever I saw him on TV, I viewed him in a completely different light.
On Saturday morning I was happy when I awoke, remembering the events of the previous day. It was now sinking in that I had actually walked—and I met Bobby Knight too! I remembered a remark he had made on one of his morning shows about winning. He said your first goal should be to put yourself in a position to win. As was often the case, his coaching was about life, as well, and I was thinking that I was now in a position to succeed in overcoming my injury. It was such a good feeling. Later I cruised down to L.T.’s room again to see if he wanted to talk. Isiah Thomas was lying on the bed with him, partially draped over his huge body with one arm around him and weeping. The nurses told me that as soon as he saw L.T. like that he immediately jumped in bed crying, “No, no, no.” There were a couple of other players gathered around the room also, and they were all very quiet and serene. It was a bittersweet moment for me—seeing so many celebrity players but at the same time being reminded of the terrible tragedy that he, as well as all of us, were going through. L.T. was blankly staring straight up in the air but averted his eyes towards me as I rolled past the foot of his bed. He said nothing so I told him I would stop back by after lunch. The whole thing seemed almost surreal. I still don’t think I believed it was all happening, even after everything that happened to me. It was just too bizarre and devastating to fully acknowledge at times and the impact was even more profound seeing someone else early on in their injury. It always reignited the initial shock I had already been through, the empathy forcing me to live it all over again. Spinal cord injury is devastating!
Later that evening Mike was sitting in his chair and I was lying in bed watching TV. We talked about how well we were doing, the fact we were the only quads that could walk, and how ironic it was that we were roommates, too. I had only taken a few steps and certainly was not doing as well as he was but it gave us an added sense of partnership. We often talked at night while watching TV and I think it made us both feel better to talk about the future. I really had not even thought about my future before but I was at least getting a picture of the way things might be a few years down the road. I’d pictured myself being able to walk normally and set a goal of being able to walk a block by years end. It was a lofty goal but I thought it was realistic judging by the progress I was making.
When Mike heard that I had walked in therapy he was happy for me. Being the good natured kid that he was I know he was sincere but I still got the feeling he thought he was lagging behind. I tried to make him feel better by telling him it was he who inspired me and showed me that indeed it was possible to overcome a cervical cord injury. He was the one that had awakened my competitive spirit and it made me work harder by seeing how much effort he was putting forth. I had nowhere near the stamina he had but I had one thing that made me more functional—my right hand. It still only partially worked and was quite numb but it made a huge difference and I didn’t want him to give up hope for the same. “You better start getting your hands back Mike. I need the competition,” I challenged him. “Yeah, that would be nice,” he said as he dejectedly looked at his floppy hands. His tone gave me the feeling that he did not think it would ever happen even though he had tremendous determination.
But I knew if he had no hand movement by then, especially with all of the rehab he had completed already, then his chances were not very good. I wanted him to keep trying, though. “Keep the faith Mike. You just never know,” I encouraged. I think I was that one in a million exception and I knew it was only by the grace of God and not just how hard I had worked on it. It was like my prayers were answered and it just happened—just like my surprising jaunt down the parallel bars the previous day. I didn’t know how I was able to do it, especially without the supposed required muscles for ambulation, but I did know it would not have happened if I had not kept trying. I kept on knocking and God finally opened the door and then it was up to me to see how much I could do with it.
Mike had his own form of denial which was actually similar to mine. I think he tried not to think about it much, just as I did, and that inherently helped to deny the permanency of our injuries. At that early stage that type of denial always keeps a certain amount of hope flickering and I’d try to encourage him as much as possible. I think he blamed himself that he was not getting more movement in his upper extremities. I am sure that is why he would often spend hours in the evening pushing carpet upstairs. I went up there with him one evening but could not even push halfway down the hall, having to quit from sheer exhaustion and pain in my shoulders. I could not believe he could do it for hours. After all, he had no hand movement or wrist flexion. But he did have more triceps than me, the muscles that are so important for pushing down on the wheels. We both had to compensate heavily, though, which was what rehab was all about.
The next time in therapy I tried the parallel bars again. After standing unassisted, I was able to take that first step but was not able to bring my left leg forward. I started having doubts. I don’t know if I’d just had an incredible burst of energy last Friday or if Dad helped to inspire me but now I was struggling. Mary and I talked about it and tried to figure out a strategy to help. I was pretty down and she consoled me by telling me it was incredible I could even walk at all with the absence of any hip or ankle flexion in my left leg. I had a condition known as foot drop and even when I did bring the leg forward the foot dragged the floor. My leg was also very stiff and the knee would often lock and it was extremely difficult to break the rigid straight leg spasm to even have a chance of bringing it forward. We decided the only way to bring it forward was to put it on a big stretch, thus forcing the knee to bend and allow some floor clearance. I tried it again by taking a very long stride with my right leg and indeed the left leg did follow. I had to lean to my right and swing it really wide for it to come forward but it worked and I was walking again. I continued practicing all week and by Friday I was able to traverse the bars there and back without resting. That night I was in the mood for celebrating.
My sister had made it down for the weekend and I talked her into going to the liquor store to buy a bottle of booze. Scotty, Keith, Lenny and I had talked about partying some weekend and this was our opportunity. The big question was what we were going to drink. After some discussion, we decided on a bottle of Jack Daniels since we could mix it with the Coca Cola that was available on the unit. Even though we were all at least twenty-one (Scotty was close to forty), it felt like we were in high school trying to get someone older to buy for us. We obviously could not buy it ourselves since we were pretty much trapped in the hospital. And since we were all there for a long time we developed a real camaraderie. It was the heyday of rehab because there were hardly any restrictions with insurance regarding the length of stay so the unit became like a second home and the people, family. Back in 1981, it was legal to drink and smoke in the hospital also. Not that that was a good thing but it sure helped to break up the monotony sometimes.
Soon my sister came back with the bottle stashed in her purse and we were all waiting there like teenagers wanting to experiment with alcohol for the first time. Since our bodies were so different now it was kind of like the first time. I think my sister felt a little funny about it, too, supplying us and all, but how could you deny a bunch of young guys who had pretty much lost about everything, including their hopes and dreams for a normal life. There was no way she could refuse.
We got our Coca Colas and started mixing the drinks secretively while one person watched the door. I had not had any alcohol since I tried sipping a beer through a straw on my birthday and it had tasted terrible then. I attempted to bring my glass around the bars of the halo but simply did not have the coordination. The halo was so restrictive that I needed something to extend from where the bars ended in front of my face, something that would go through the narrow area which was the width of my face and then to my mouth. During meals I did not eat anything that required a spoon due to the certainty I would lose it once I got it past the bars. Therefore it was always a fork for food and an extended straw for drinks. I looked around and grabbed the straw out of my water pitcher and then began sipping in the usual awkward manner. I have to admit it was tasting pretty good.
Mike stayed in the room but didn’t join us since he was underage. He expressed a definite curiosity but must have been too shy to ask. He seemed happy lying there and watching and was content just being part of the ruse. Timmy came flying in doing a wheelie and immediately sensed something was up. Unlike my roommate, he persisted on having a drink and so we gave him a taste just to shut him up. We didn’t really want the nurses to know and certainly wanted to keep it legal.
Beth came in a couple of times and at first was none the wiser. I think she was just happy we were all in a good mood. But she got a little suspicious after a while, probably because Timmy was acting drunk after only a sip of Keith’s drink. He was smiling from ear to ear and almost tipped over backwards twice while balancing on two wheels. He was considered pretty much an expert with his chair and therefore that was very unusual—and Beth knew it. She knew something was going on, especially since we kept ordering Cokes and laughing it up. Even though we were supposed to drink as much as possible to stave off bladder infections, we usually had to be prodded into doing so by the nurses. So it was pretty dubious to be asking for so many Cokes.
“What’s so funny you guys? Why is everyone in such a good mood?” she mused with a big grin. We all started snickering and looked to each other for an answer. “We just love seeing you Beth,” I finally quipped. “Oh right you guys,” she exclaimed in disbelief. Lenny had stashed the bottle under my pillow and it was pretty funny when Beth came over to turn my bed down. He headed her off and blocked her with his wheelchair, looking up and trying not to smile while acting like he was just giving her a hard time. “You sure look like the cat that ate the canary,” she claimed, putting her hands on her hips. “What are you guys up to?” she inquired again as she looked curiously around the room. Scotty said nothing and I certainly was not about to volunteer any more information so she looked over at innocent Mike who was still lying in bed trying to hold back a smile. His face turned red from being put on the spot and deciding he wanted no part of it, shook his head and got up to wheel out of the room. “I don’t know what you guys are up to,” she said as she grabbed the water pitchers, “but I’m sure it’s no good.” She was kidding, of course, but said she would be back to interrogate us before ending her shift. Lenny went to the door and slammed it behind her, backing up against it so no one else could get in. I’m not sure why we were so adamant about hiding the fact we were drinking. The hospital was pretty much our home so I think it goes back to our injuries and how we were made to feel like kids. We were also just having fun with Beth, too.
Anyway, we were getting pretty hammered when Timmy asked if anyone wanted to go explore the hospital. Keith and Lenny thought it sounded like fun in their altered state of mind so they agreed to go with him. Alcohol certainly did change your perspective on things. It seemed to ease the frustrations and allow us to forget about our predicament, if only for a while. I declined to go since I knew I could not keep up and did not want to be lagging behind and also because it sounded pretty juvenile. I think Scotty decided to stay behind for the same reason.
Scotty and I then started talking about his life in England and how it compared to the United States. He told me the one thing he noticed was that the women were much prettier here—and much more forward and aggressive, too! Suddenly he got a funny look on his face and excused himself to go next door and use his urinal. “I’ll be right back,” he promised, as he disappeared around the corner. After he left I wheeled over to the bed to grab the bottle from under my pillow. As I leaned over, whatever little balance I had went right out the window because of the alcohol. I fell over forward and put my hand on the floor in an effort not to fall out of the chair. Fortunately I stopped myself from falling right on my halo but I was stuck! Really stuck! I tried everything to right myself but it was impossible. It was pretty bizarre and scary and I started to panic as I became dizzy from all the blood rushing to my head. Granted, I was not thinking as clearly but I don’t think I would have been able to get up anyway. I simply did not have the trunk strength or coordination. I had never been in a situation like that before, with the weight of a halo pulling me to the floor and I found there was absolutely no way to straighten back up.
Scotty eventually came back and was alarmed when he saw me because he thought something was wrong. I told him I was okay and with a nervous laugh told him I sure could use a hand. Of course I was really pretty worried because I was barely keeping myself from falling onto the floor, no man’s land for a quadriplegic. He quickly grabbed me by the arm and easily pulled me back up and what a relief that was! I was real dizzy when I straightened up and hoped I would not pass out like I had so many times in the past, fully aware that there was no one there to tilt my chair back and bring me around. Fortunately, my blood pressure was much stronger than before and I began to feel better after only a few minutes.
I learned something that evening. I was so uncoordinated already and learned alcohol severely compromised what little movement I had. That was not the direction I wanted to be going in, one where I had even less control, so I decided that drinking was probably not a good idea, at least not until I was better equipped to handle it. And definitely not while I was alone. I decided to go to bed to get off of my rear-end and so Scotty went back to his room. It sure felt good when the nurses put me to bed. The other guys came by for a brief visit and I noticed their coordination had not been affected like mine. It was another example of the huge difference of abilities between a paraplegic and a quadriplegic. I slept like a baby that night—but what a hangover the next morning! I was glad there was no therapy.
On weekends you were allowed to sleep late and I was glad for that. They still encouraged me to get up and eat with the other patients but I enjoyed the privacy of eating in my room so I stayed in bed and waited for my visitors. When no one showed up that morning I decided to get up to see if I could find something to do on the unit. Since I could push my wheelchair independently I cruised around to visit other people. I wandered into a room where there was a man who was nearly blind and recovering from eye surgery. Apparenty they had put him on our unit because there were no other rooms available on other floors. I had thought that a spinal cord injury was the most severe injury a person could have but I couldn’t imagine living in the world without sight. I loved being able to observe people and places and especially nature. The one thing about spinal cord injury is that your senses remain intact, except for touch. Sensation was a big loss but at least you could compensate with your vision. We started talking about our disabilities and to my surprise, he was feeling the same way. He told me he had been feeling sorry for himself until he was placed on our unit and that now he was suddenly feeling fortunate that he had only lost his vision. It was interesting to note that we were both feeling better about our own disabilities by thinking the other person was worse off. I suppose that with any injury you have to look at the positives and focus on the functions that remain. It is all a matter of perspective, I guess.
After a short visit I was still not feeling too great so I asked to be put to bed. “I heard you boys had quite an evening,” the nurse chided. I didn’t think she would know because the weekend nurses were always different but they had a thing called report, I learned, which did not allow you to get away with much. After resting and watching TV for most of the day, I was in the mood to roll around looking for someone to talk to again since there was nothing else to do. I was kind of a night owl on weekends but unfortunately, even on a Saturday night, the only people left on the unit were usually fast asleep before nine o’clock. Therefore I found myself sneaking behind the nurses’ station to bother them. I think they enjoyed the company, especially since they thought I was witty and a good conversationalist and once again I found myself catching up on all of the hospital gossip. The nurses seemed to thrive on it. It must have been a good distraction for them in addition to providing some late-night entertainment for me.
Occasionally I would go off the unit where I would see other late nighters. I met a girl one night who was roaming the halls alone. We were the only two people on this long corridor and we stared at each other until we finally met in the middle. She stopped and said hello and I reciprocated in a friendly manner. She was very friendly but appeared a little spaced out. She had shoulder length, light brown hair, and was wearing a hospital gown. We had only exchanged a few words when a nurse called to her, “Michele, you know you’re not supposed to be out of your room this late!” Michele looked around and innocently replied, “Oh, I didn’t know that.” When she turned to face the nurse I could see that her gown was left open exposing her entire backside. She turned back to me and reluctantly said, “I guess I have to go. Maybe I will see you later.” The nurse had reached us by then and grabbed the back of her gown, angrily tying it tightly in a bow and continuing to scold her. “I warned you not to be wandering the halls at night. Now come on!” I figured I must have wandered near a psychiatric unit or something because then the nurse grabbed her arm and repeated, “Come on now, let’s go!” As the nurse led her away, it looked like she was almost dragging her and she looked over her shoulder and with her free hand untied the bow on the back of her gown, again exposing her shapely behind. “Good-bye,” she said softly, smiling as the nurse tugged her along by one arm as she extended the other one back toward me as if she was yearning to stay. The nurse had no idea and I just smiled and was thinking, Wow! I watched her butt jiggle as she trotted behind her all the way down the hall until they turned a corner. She, as well as the other girls I knew, certainly were acting strange toward me, I thought. Maybe it was out of sympathy since I was in a wheelchair or maybe that particular girl was just a bit crazy but I was sure not having your run-of-the-mill encounters.
On the way back to the spinal cord unit I got lost and pushed my way through a set of double doors while trying to find an elevator. I looked down and saw a strangely familiar sight. There were recessed lights in the floor like the ones I had smashed with a hammer in my near death dream.“What are you doing in here?” a voice snapped, jolting me from my thought. I looked up to see an orderly in a white uniform. “This is surgery,” he said. You’re not supposed to be in here.” I explained I was lost so he pointed me in the right direction. But the sight of that light was almost haunting. I surmised that there must have been similar lighting when they turned me over to drain the pus out of my abdomen during the emergency surgery. The light was the last thing I remembered before entering the other realm. It was like I dove into the all encompassing brightness and as it enveloped me I passed through to another plane of existence. I still could not figure out what it all meant and I thought about it until I finally reached my room on the third floor. I had trouble going to sleep that night because I kept thinking about those terrible times when I nearly died.
Late in the afternoon on Sunday, Mike was already back and the guys also came down to the room after returning from their weekend passes. Keith rolled up with a smile on his face and said, “Look.” I looked down at his right foot which he was moving up and down. “Gas pedal, I got gas pedal!” he exclaimed. “That’s great,” I said. “Yep, I drove my brother’s car around a parking lot this weekend. It was easy except I had to pick up my leg to put it on the brake.” Lenny had also wheeled in and caught the last part of the conversation. “You drove man?” “Yeah man, check it out—gas pedal,” Keith repeated. Lenny kept his eyes down looking at his own feet and declared, “Yeah, that’s cool. I’m just going to go out in a big field and practice using a stick.” We all laughed. “What if you have to brake real fast in a lot of traffic?” I asked him. “Yeah, Lenny,” Mike butted in, laughing and looking curiously at Lenny’s feet from where he was lying in his bed. “What are you going to do then?” “I can do it. I’m telling you guys I can do it!” “I believe you man,” Keith acknowledged.
Timmy then came flying in on two wheels and halted suddenly, balancing himself in his usual manner. “What are you guys talking about?” he asked. “Lenny thinks he can drive with a stick,” Mike teased while still laughing. Lenny gave him a dirty look and then looked downward again in anger. “Man, you guys suck—I’m outta here!” But he stopped at the door, probably realizing he had no place better to go and then slowly popped a wheelie and turned back around. “Look Tim, gas pedal,” Keith said again, apparently so excited that he had to tell everyone. “I wonder if I will be able to drive,” Timmy contemplated in a very low tone. He had not even gotten his license yet and I assumed it would probably be even more difficult for him since he had never even driven a regular car before. But I had heard hand controls were pretty simple and I shared that hope with him. He looked up and smiled brightly.
They were all chattering back and forth about their weekends when I cut in, “You guys missed it this weekend.” “Why, what happened?” Lenny asked, curious. I told them about the girl that liked showing off her fanny. Mike’s face lit up and with obvious excitement exclaimed, “What, no way!” “Where?” Tim and Keith asked in unison. “I was just exploring around and met her on the fourth floor,” I told them. “Wow man, let’s go,” Timmy asserted, anxious to see for himself. They all hurriedly rushed out of the room and Mike started to get up but then stopped. “Did that really happen?” he asked. “Yeah man, she was just walking around with the back of her gown open.” “I’d like to see that!” he said with a smile.
Later in the cafeteria room I asked if anyone had seen her. “No, we didn’t find anybody,” Lenny replied. “I saw her!” Timmy added with a big grin. “You did not!” Mike responded in disbelief. “Yeah, he didn’t see anybody,” Keith admitted. “Yes I did, I swear,” he insisted, the big smile on his face fading. But I don’t think he really saw her and was probably making it up to impress the other guys. But you never know.
After supper, I went down to visit Landon again. He was like I had been when I first got on the unit, not wanting to join in the group and isolating himself in his room, especially during meals. It was a little more difficult to get him up in the chair and they did not like to wheel him down in his bed since he had an extender at the end to accommodate his height. “You doing okay?” I asked. “Yeah man, everything’s cool,” he responded. Then a nurse popped in saying, “I think Rick is planning an outing this week. Are you going Steve?” “I don’t know. Where are they going?” I asked. “I ain’t goin nowhere,” Landon said in despair. “Well, I guess I’ll see you in therapy,” I told him, sensing he did not want to talk. I think it took everyone a while to get adjusted to rehab. It was easier to tell yourself it was just not happening.
The next day in therapy, after completing a run in the parallel bars, Mary challenged my confidence again. “Let’s see how well you do with a walker,” she said. It was frightening to look out over the open therapy room without feeling the normal spatial cues which tell your brain how to direct your body. In other words, I felt like I had no balance at all and I was feeling extreme anxiety as I ventured outside the bars for the first time. It was like an agoraphobic reaction, being afraid of the open space like that. Even though I had both hands on the walker and Mary held me securely from behind, I felt like I was surely going to fall because the room looked like this huge open expanse with nothing to hold on to. The walker did not seem like it would suffice because it was easily moveable and I was pretty sure I would end up slamming down on the hard marble floor. It seemed to be rising up to me as I looked down and it made me dizzy as I tried to concentrate on taking my first step.
After finally gathering the courage to try, it felt like I was wearing lead boots when I tried to pull my leg forward, the gravity making me feel like I weighed five-hundred pounds and seemingly forcing me to the ground. It was the strangest feeling being so unsteady and unsure of myself. After some encouragement I managed a couple of awkward steps but still felt I was on the verge of falling flat on my face. I could lean my upper body forward while putting my weight on the walker but my legs would just not cooperate like I wanted them to. It was such a huge strain that I decided those couple of steps were enough for that day and felt relieved to be back in the comfortable security of my wheelchair.
Totally exhausted by the time I made it up to the rehab unit, I stopped to rest before wheeling down the hallway to my room. It was so difficult to get my breath and seemed like I was expending every ounce of energy I could muster just to get there. After a few deep breaths I slowly continued on my way. I heard the clanging of crutches and then suddenly someone grabbed my chair from behind and started pushing. With the halo on I could not turn my head to see who it was but then heard Timmy’s familiar voice. “I gotcha Bro,” he assured me. He was walking with long leg braces and arm canes and I think he appreciated the stability of the chair as much as I appreciated the push. He had a great deal of strength and energy but was still breathing hard as he struggled to swing his legs forward while he leaned on my chair.
Upon entering my room he collapsed on a chair with a loud thud, the canes crashing to the floor on either side of him. “Thanks Timmy,” I said. “I did not know you were walking on the unit. Pretty tough, huh?” “It’s not too bad,” he said as he straightened up to catch his breath. He leaned over again to straighten his legs, grabbing the braces to pull them into position. “I can’t get used to this locking mechanism on the knee, though,” he admitted as he examined the brace. “I almost went down right before I grabbed your chair. Thanks right back at you man,” he said. We both smiled, realizing we both knew the incredibly difficult task of walking. “Yeah, compensating really throws you off balance, doesn’t it?” I acknowledged, having been there myself recently. “You can say that again!” he exclaimed. “Well, I’ve got to get back to my room and get these leg braces off. I need my chair,” he admitted, exhausted. I watched him as his arms bulged while placing the canes on the floor near to him and then pushing up with all of his might, he came to a standing position. “I’ll see you later in the cafeteria,” he said, throwing one leg forward and proceeding to lean his way on out of the room, the entire weight of his body on the canes. I could hear the canes and braces clang loudly as he struggled to keep up with his forward momentum down the hall. “Okay buddy, see ya later,” I yelled, pondering the fact that it was such an uphill battle for all of us.
I had a little time before supper and decided to stroll down to Landon’s room to check on him again. Seeing the struggle and the effort put forth by others like Timmy motivated me to keep going as well. About halfway down the hall I heard a loud bellowing cry for help from his room. A nurse shot out of the back door of the nurses’ station and yelled to another nurse at the end of the hall, “You better go check on the new patient. He’s probably impacted since I already cathed him.” L.T. had just gotten a new roommate whose injury was two years ago and I heard he had been in and out of the hospital for numerous problems since his discharge. He was a complete para and I learned he had often been readmitted for decubitis ulcers, or as they were more commonly known—bedsores. That was the topic at the last education class, the need to continually check certain pressure areas for redness that could lead to the ulcers. Most guys have little or no feeling below their level of injury and some are not too good about relieving pressure either.
Bedsores could occur almost anywhere but the most common areas were around your sacral area or other parts of your body that come in contact with the wheelchair or bed. Therefore, ankles, heels, hips, and the buttocks area were commonly affected areas. When I was rolled in my bed into one of the group sessions for the first time, I had wondered why a lot of the guys were pushing up on their wheelchairs one after the other in a row and hovering there for a minute or so before resting back on their cushions. It was not long before they would do it again, popping up one after the other and I comically thought it looked like they were faking to stand up like the old TV show, “Will the real so and so please stand up.” I thought it strange and it certainly was a little funny at the time. Until I learned of the necessity and serious consequences for those who failed to do so, that is.
That sitting pressure, as well as any excess pressure to any part of your body, could also cause a condition known as autonomic dysreflexia, or as it was more commonly called—hyperflexia. It included bowel or bladder distention too, and since it was a potentially life-threatening condition the pressure had to be relieved immediately. In this man’s case, the need to have digital stimulation to evacuate his bowels was urgent. Although he could not feel anything, a painful, pounding headache was the telltale sign that something was wrong. I figured that the headache must be intense and come on suddenly to cause such a strong response. The digital stimulation the nurse provided was simply a finger up you know where to stimulate the sphincter muscle. There are just so many pleasant things about spinal cord injury, I thought to myself sarcastically. But the whole mess was certainly a learning experience—as well as an experience in complete and utter humility. Due to the inconvenience of the moment, I decided to turn back around and sit in my room until called for supper.
After a while Mike came back from his usual after hours pushing of carpet upstairs. “I don’t know how you do it Mike. You must be crazy!” I declared, kidding him about his incredible motivation. “Heh, heh, you should come up there with me some time Steve.” “I don’t think so,” I replied. “I don’t think I’m quite ready for that yet.” I was hoping that one day I would have the strength and stamina to do so, however. “Are you going to go to the baseball game?” he asked me, changing the subject. “Is that where everyone is going this Friday night?” I questioned. “Yep, ballpark franks for supper. Mmm! “I don’t know, do we have a choice?” I then asked, smiling at his obsession with food. “Heh, heh. Yeah, they say we do—but I really don’t think so,” he responded. After my experience with trying to get out of the movie the last time, I tended to agree with him. One way or another I knew they would talk me into going no matter what excuses I could come up with.
I immediately felt some anxiety thinking about the first time I would venture out into the community in my condition. How would I get along and how would I respond to strangers looking at me. For that matter, how could people not look at a large group of people in wheelchairs, half of us wearing our space-age looking halos. It was scary just thinking about the outside and the main thing I did not want to happen was a bowel or bladder accident. I’m sure that would go through most everyone’s mind, including the nurses and therapists who would chaperone because it would inevitably complicate the outing and ruin the time for whoever was involved. And with that many cord injuries it was bound to happen. I just hoped it wouldn’t be me.