“So I hear you may be busting out of here soon,” said my occupational therapist, Ellis, during our session that day. We were working in my room, where he was teaching me how to transfer between my bed and wheelchair with assistance. I was determined not to have to use a Hoyer lift to get in and out of bed once I went home.
“You heard correctly,” I replied, as I rested on my back, breathing hard from the effort of hauling my heavy body out of my wheelchair and onto the bed. “I’m hoping sometime in the next week or so, if the house and everything is ready.”
It was mid-March, exactly eleven weeks since my accident and almost two months since I’d moved to the rehab center. My insurance plan would only cover eight weeks of inpatient rehab, so after that point, I would be paying out of my own pocket to stay there. I could afford it, of course, but in my mind, it didn’t make sense to drop a thousand dollars a day on a room at the rehab center when I could go home to my son and continue my therapy on an outpatient basis.
“Wow, that is soon!” Ellis exclaimed. “Have you got caregivers lined up to help you out at home?”
“Working on it. We’re interviewing a few people this afternoon.”
My mom had spent the last month making arrangements for my move home, overseeing the necessary renovations to my house, ordering a wheelchair-accessible van and the medical equipment I would need, and screening applicants for the caregiver position she had posted an ad for a few weeks ago.
“Well, good luck, man. I hope the interviews go well.”
“Thanks. Me too.” I was nervous to meet the potential caregivers my mom had found and hoped at least one of them would work out.
“You know, you really should consider going on one of the community reintegration outings this week,” Ellis suggested. “There’s a group doing dinner and a movie Friday night. What do you say?”
“I don’t think so,” I replied without hesitation. For weeks, he had been trying to convince me to go on one of the excursions offered by the rehab facility. Every weekend, they would load an accessible bus with people in wheelchairs and take the group out on the town somewhere. They went to restaurants and bars, movie theaters, bowling alleys, beaches, once even a Lakers game. These little field trips gave recovering patients the chance to get out of the hospital for a few hours and practice the skills they’d been working on in therapy in a real world setting before they were officially released back into the wild.
Physically, I was ready to participate. Emotionally, I wasn’t. The thought of being out in public, where someone was sure to recognize me, made me break out in cold sweat. I knew all it would take was for one person to tip off the paparazzi, and I would find myself surrounded by opportunistic sleazebags, clamoring for a picture of me in my wheelchair to sell to the tabloids and celebrity gossip sites. I didn’t want to attract that kind of attention, nor would I subject everyone else on the bus to it. It was better if I stayed behind.
“Well, all right - suit yourself,” said Ellis with a shrug. I could tell he was disappointed in me, but he let it drop. “You ready to try transferring back to your chair?”
I took a deep breath, summoning my strength. “Yep.” Even sitting up from a lying-down position took a ton of effort. Without control of my abdominal muscles, my core was so weak that I couldn’t just sit straight up the way I used to. First I had to roll over onto my side, which was a struggle in itself. Able-bodied people use their hips and legs to turn themselves over in bed, but since mine were paralyzed, I had to use my arms. Ellis had taught me a technique that involved swinging both arms across my body, using my shoulders to rock my upper body back and forth until I gained enough momentum to carry me all the way over onto my side. Once my upper body twisted enough, my hips and legs would eventually follow. Then I could prop myself up onto my elbow and use my forearms to slowly push myself into a sitting position. Sometimes it took me more than one try, but I was getting better at it with practice.
My legs began to twitch as I pushed them over the side of the bed, like they tended to do whenever I changed positions. The spasms had gotten more intense over the past month, but they never lasted long. I waited a few seconds for them to calm down before I slowly scooted to the edge of the bed, pushing off the heels of my hands and using my arms to haul myself across the mattress. This would have been impossible just a few weeks ago, but the stretching and strength training I had been doing with Charisma in P.T. had made a big difference in my ability to maneuver my new body around. Gradually, I was getting stronger and more flexible.
“Good,” said Ellis, as he positioned my wheelchair beside the bed. He had pushed one of the armrests straight up in the air so it wouldn’t get in my way. He wedged a wooden transfer board under my butt, which would make it easier for me to slide over to my wheelchair. “All right, now remember: one hand goes on the seat of your chair; the other one stays on the edge of your bed. On the count of three, you’re gonna use your arms to push off the bed, and I’ll guide you over to the chair. Are you ready?”
I sucked in another deep breath. “Yeah.”
“Okay, here we go.” Ellis held onto the transfer belt that was tied around my waist with both hands. “One… two… three.” As I pushed, he pulled me up and across the board to my wheelchair. “There you go… good work, man!” He bent down to lift my legs onto the footplates, then scooted me backwards so I was properly positioned in the chair. He carefully adjusted my clothes, making sure nothing was bunched up in the back before he buckled the seat belt around my waist and put the armrest back in place. “How does that feel?”
“Good… much better than being hoisted out of bed like Shamu.”
Ellis laughed. “We’ll keep working on it so you can show your caregiver how to assist you with a transfer. Eventually you may even be able to get yourself into bed at night. Most quadriplegics with your level of injury still need help getting up in the morning, when they’re more stiff.”
I took his words with a grain of salt. My level of injury had already changed since the first time it was assessed. In the ICU at Cedars-Sinai, Dr. Bone had originally diagnosed me as a C4 complete quadriplegic, but the last time my doctor at the rehab center had evaluated me, two months after my accident, he said I was a C5-6 because of the sensation and motor function I had regained in my arms and wrists. From talking to the other quadriplegics in my support group, I knew one little vertebra could make a big difference. Had my level of injury been any higher, I probably would have been dependent on a ventilator for the rest of my life, having lost control of my diaphragm and the ability to breathe on my own. Any lower, and I would still have working triceps and some finger function.
I didn’t want to get my hopes up, but in the back of my mind, I had considered the possibility that Dr. Bone’s prognosis was wrong. Maybe my injury wasn’t really complete. Maybe I could continue to recover and exceed the expectations she and everyone else had set for me. Walking again was the least of my concerns. I would be happy just to be able to get out of bed and go to the bathroom by myself. Take a shower and get dressed without help. Change my baby’s diaper. There were so many little things I had taken for granted before the accident. But I had already learned to do more than I thought was possible when I was lying flat on my back in the ICU, unable to move any part of my body below the neck. My life would never be the same, but maybe I could still have some semblance of normalcy once I went home.
“Good luck with the interviews,” Ellis told me again before he left at the end of our session. “I hope you find someone who will be a good fit.”
“Thanks, man,” I replied. “Me too.”
My mom arrived early that afternoon without Mason, whom she had left with a babysitter. I had decided to skip my support group meeting so we would have more time to meet with the caregiver candidates she had arranged interviews with. “I brought you something nice to wear,” she said, showing me the navy dress pants and pale blue button-down shirt she had dug out of my closet at home.
I eyed the clothes warily. “I hope they still fit.” I hadn’t worn anything but baggy sweats, oversized t-shirts, and athletic shorts since leaving the hospital. According to the wheelchair-accessible scale they rolled me onto once a week, I had lost weight, but I still felt fat whenever I looked down at my flabby quad belly without the abdominal binder I wore to help me breathe better when I was upright in my chair.
“They’ll be fine, hon,” my mom assured me. “Here, let me help you put them on.”
I wasn’t thrilled about having my mother change my clothes, but I knew better than to argue with her. As she bent down to take off my tennis shoes, I merely said, “You know, Ma, the nurses usually transfer me back to the bed before they put on my pants. It’s easier that way.”
“Well, that sounds like a lot more effort just to put a pair of pants on,” she replied, loosening the laces so she could slide the sneaker off my right foot. “We can make it work this way.”
I shrugged. “Whatever you say. I just don’t want you hurting yourself.”
She gave me a look. “You know I don’t like when you treat me like a little old lady. I’m a tough old broad,” she said, as she lifted my left leg from its footplate to tug off the other shoe. “I’ll be fine.”
“Well, how do you think I like you undressing me like I’m a toddler?” I fired back at her. I kept my tone playful, but I meant every word.
“Oh, Kevin…” She let out an exasperated sigh, but she didn’t say anything else. She must have understood how humiliating it was for me, as a thirty-six-year-old man, to have to be helped this way by my own mother. She eased the elastic waistband of my shorts down over my hips, but they wouldn’t go any further while I was sitting down. “Can you lift up your butt at all?”
“I can try.” I had been taught to do a couple of different weight shifts, which involved leaning from side to side or all the way forward to relieve the pressure on my sitting bones from being in a wheelchair all day. I leaned as far as I could to the left so she could remove the shorts from my right side first. Then we switched sides. “Watch the leg bag,” I warned, self-conscious about the catheter bag I wore strapped to one thigh to collect my urine.
“I know. Don’t worry,” she said, as she slid the shorts down over my knees.
That was the easy part. Putting on a pair of tailored dress pants was much more difficult.
“Can you lift yourself up a little more?” she asked, panting as she struggled to pull the fabric up far enough underneath me.
“No, I can’t, Ma; I’m paralyzed. This is why they usually put me back on the bed and roll me.”
She gave me another look.
“All right, fine,” I sighed. “Let me try leaning forward so you can pull them up from the back. If you loosen my binder, I’ll be able to lean further.”
She lifted my shirt and unfastened the abdominal binder. Without it, my upper body would flop facedown into my lap when I leaned too far forward. I didn’t have the core strength to pull myself back up, but that didn’t matter when my mom was right there. When I doubled over, she reached around me and managed to wrangle the pants into place. Then she pushed me back into an upright sitting position, fixed my binder, and fastened the button on the front of my pants.
“There!” She heaved a sigh of relief, pushing her hair back off her perspiring forehead. “Now for the shirt.”
Thankfully, shirts were much easier to get in and out of, especially since I had been cleared to take off my neck brace. The first time I had sat up in my wheelchair without it, I’d felt like a bobblehead - my head seemed so big and heavy, while my neck felt as weak and scrawny as a newborn baby’s. I trusted my doctor when he told me my spine had finished fusing together, but even with the extra hardware reinforcing it on the inside, I still had this irrational fear that my neck would somehow snap in half without the support of the rigid collar that had stabilized it for so long. It had taken me a few days to adjust to not wearing it. I felt much freer without it, but also more vulnerable.
My mom lifted my t-shirt over my head and arms, then slipped on the button-down one arm at a time. It felt uncomfortably constrictive compared to the loose-fitting cotton t-shirt. “Good thing I have my Spanx on,” I joked, as she pulled the two halves of the dress shirt together over my binder. I couldn’t button it myself, so she knelt down in front of my chair to do it for me, her arthritic fingers fumbling with the small buttons.
“I brought a tie if you wanna wear one,” she offered, as she neared the top, tucking the chain that held Kristin’s wedding ring under the crisp fabric so it rested close to my heart. “I wasn’t sure if you’d want me to button it all the way up or leave the collar open.”
“All the way,” I answered. It would hide the ugly scar on the front of my neck, where it looked like someone had tried to slash my throat. There was an even longer scar on the back of my neck, which resembled train tracks running down my spine. My mom had taken a picture to show me. It was a pretty nasty sight.
She buttoned my collar and tied a navy blue tie around my neck. “You look like a million bucks,” she said once she’d finished lacing my shoes, smiling as she stood back to inspect me.
“I feel more like fifty bucks… but thanks,” I said, forcing a smile back. It felt good to be wearing nice clothes for the first time since going out on New Year’s Eve, but it was also a little weird. I wasn’t the same person I had been the last time I’d put on an outfit like this. I would probably never be that person again. It felt like I was some kind of imposter who was just pretending to be a wealthy, well-dressed entertainer.
“Would you like to hold the interviews outside?” my mom asked. “It’s a beautiful day! Feels like spring!”
I laughed. “It always feels like spring in Southern California, Ma… at least until it’s summer. But sure, we can go out to the courtyard.”
She hesitated. “You won’t get too cold?”
“If I get cold, we can come back inside,” I replied, trying to be patient with her. I hated when she treated me like a baby, but I knew she only had my best interests at heart. She had done plenty of research on my injury; she knew my new body couldn’t regulate its temperature as well as the old one had. I didn’t shiver or sweat below my level of injury, so I got chilled or overheated easily, and it took me longer than normal to warm up or cool down.
“Maybe we should bring a blanket, just in case.”
I shook my head. “I don’t need one.” I usually wore one over my lap to keep my legs warm when I went outside on cooler days, but it made me look like an elderly man, all bundled up in my wheelchair. I didn’t want to be seen as an invalid, even though that’s what I was.
“Suit yourself,” she said with a shrug, slinging her totebag over her shoulder.
We went out to the courtyard and found a table in a far corner where we could conduct the interviews. My mom had scheduled five of them.
The first was a young man named Andrew. “But you can call me Andy,” he said with a grin. He was in his mid-twenties, stylishly dressed and impeccably groomed, with not a single hair out of place.
“Thanks for coming, Andy,” my mom said, as she escorted him over to a small table, where I sat in my wheelchair. “This is my son, Kevin.”
Andy’s eyes lit up when he looked at me. “Oh my god, I’m such a big fan!” he gushed, grabbing my right hand between his two and ringing it enthusiastically. “I literally own every Backstreet Boys album. It’s such a pleasure to meet you!”
I decided right then I would not be hiring Andy. Friendly as he was, I didn’t want a fan as my caregiver. It would be too weird. And while I have no problem with gay people, I have to admit that the thought of him looking at me with stars in his eyes while he washed my body in the shower or changed my catheter made me uncomfortable. It was the same reason I didn’t want a female caregiver.
“You can’t discriminate against women,” my mom had argued when I’d asked her to only contact male applicants.
“I’m not discriminating,” I insisted, feeling my face heat up. “But if I have to hire someone who’s gonna see me naked, I would prefer them to have the same parts as me. I’m being selective, that’s all.”
She gave me an exasperated look. “What does it matter if they have the same parts or not? You had mostly female nurses taking care of you in the hospital, and you didn’t complain about that.”
“I didn’t have a choice then. Now I do, so I’m gonna make the choice I’m most comfortable with. I mean, look at it this way, Ma: Wouldn’t you rather go to a female gynecologist?”
My mom bristled. “Maybe, but ‘being selective’ wasn’t always an option for me. Back when I was having babies, there were no female gynecologists in Lexington. You and both your brothers were delivered by a male doctor, and all the nurses were women. You’re lucky you even have a choice.”
“Yes, I am,” I agreed and left it at that.
Our next interview was with a man named Jian. He looked disheveled, with his shirt half untucked and his hair sticking up in the back. While Andy had been an open book, Jian was hard to read. He rarely smiled and gave mostly stilted, one-sentence answers in broken English. He seemed so nervous, his hands wouldn’t stop shaking. I wasn’t sure if it was the language barrier making him anxious, or if he was just shy. Either way, the thought of being in a room with someone who could barely carry on a conversation with me during my two-hour morning routine made me cringe almost as much as trying to imagine him helping me with my bowel program while his hands were trembling that badly.
After the first two candidates, the third one, Greg, was like a breath of fresh air. He was in his late forties and exuded confidence, competence, and charisma, looking me in the eyes as he gave me a firm handshake. I couldn’t feel his hand gripping mine, but I could tell it was firm by the way he pumped my arm up and down. “It’s nice to meet you, Kevin,” he told me, but there was no mention of him liking my music or being a fan. I was more than fine with that.
My mom had typed up a list of specific questions to ask each candidate about their qualifications and caregiving experience, but I was more interested in getting to know them as people. “So, Greg, tell me about yourself,” I began, once he’d taken a seat at the table.
“Well, I’ve been a registered nurse for twenty-six years and worked in just about every type of setting you can imagine,” he said, flashing an easy smile. “I started out in an assisted living facility, then worked for a home healthcare company for a while before I got my last job in one of the surgical wards at UCLA Medical Center. That’s where I met my ex-wife, who was doing her residency. Unfortunately, it didn’t work out - we got divorced last year.” His smile faded. “Things got awkward at work, so I decided I needed a change. I’m hoping to find a new job that will give me more time to spend with my kids. I’ve got a ten-year-old son and a fourteen-year-old daughter. My ex-wife and I share custody, so I have them a few nights a week while she’s working and every other weekend.”
“I would probably only need help for a few hours in the morning with things like getting out of bed, going to the bathroom, showering, and getting dressed,” I explained. “My mom can do the rest, and I have a friend who may be moving in with me to help out, too. So you could come over after you get the kids off to school and be home well before school lets out.”
“Wow, that would be perfect,” said Greg, smiling again. “I’m planning to coach my son’s Little League team this summer, so it’d be nice to have my afternoons and evenings free.”
“That sounds fun.” A lump rose in my throat as I realized I would probably never be able to do that for Mason when he got older. Even playing catch in the yard would be difficult without control of my hands. I was going to miss out on so much. But I didn’t want to dwell on it at that moment. Clearing my throat, I said, “So you’re a sports fan?”
“Oh yeah. Big Dodgers fan here, but I love the Lakers, too. How about you? Are you into sports at all?”
“Absolutely. I’m more of a football guy, though. I played in high school.” I wanted him to know that I hadn’t always been this way, that I was an athlete, even though I didn’t look like one anymore. “We didn’t have any pro teams in Kentucky, where I grew up, so I followed college sports more. I still root for my Wildcats, but my wife, who was from Kansas, turned me into a Chiefs fan, too.” Grief swelled up inside me again when I heard myself talking about Kristin in the past tense. It was going to be hard to get through football season without her.
“Oh cool. They’re a young team, but give them a few years, and they’re gonna be good.”
“I hope so. Last season was rough,” I said, grimacing. My wife’s beloved Chiefs had ended their 2007 season with a nine-game losing streak, failing to make the playoffs. Maybe they would be better this year, I thought, with her cheering them on from Heaven. Kristin could convert anyone into a Kansas City fan, even God.
“So, Greg, it sounds like you have plenty of caregiving experience,” my mom interjected, trying to get the interview back on track. “Have you ever worked with patients with spinal cord injuries?” She ran through her list of questions, and Greg answered each one with ease. I was ready to hire him on the spot, but we still had two more candidates to see, so I thanked him for his time and told him I’d be in touch soon.
“He was great,” I said to my mom after Greg had gone. “Experienced… easy to talk to... I could get used to having him as a caregiver.”
“Good,” she said, smiling. “I agree, but let’s give the others a chance, too. You’ll probably need to hire more than one, unless you plan to make him work seven days a week.”
She was right, of course. It wasn’t practical to expect the same person to come over every single day. “Good point. So who’s next?”
My mom checked her list. “Sam Torres. He’s one of the med students who applied.”
“Oh, cool.” Bob, the instructor of my quad class at the rehab center, had said medical students made great caregivers because they were hard-working, reliable, eager to learn, and willing to do procedures that others might shy away from, like insert a suppository or change a catheter. I made sure my mom reached out to any male students who were interested in the position.
But the next person to walk across the courtyard was a young woman.
“Hi, I’m Sam,” she said, smiling as she wrapped her small, brown hand around mine.
I stared up at her, thrown off by her unexpected appearance. Besides being the wrong gender, she didn’t look anything like a med student to me. I had been picturing a nerdy sort of young man, but this girl was entirely something else. Her hair was dyed teal blue and cut into a trendy, asymmetrical style - chin-length on one side of her head, partially shaved on the other. Her round face was dominated by a pair of big glasses with thick, bright red frames. She was wearing a mustard-colored blouse with a pair of cropped black pants, purple suspenders, and leopard-print ballerina flats.
“Kevin,” I managed to choke out after a moment, when I realized I was being rude. Then, figuring I might as well be honest, I added, “Sorry… I wasn’t expecting you to be a woman.” I glanced over at my mom, who looked just as surprised. She didn’t see too many people who looked like Sam in rural Kentucky.
The blue-haired girl laughed, her brown eyes sparkling behind her glasses. “I get that a lot,” she said, sitting down across from me. “It’s the name. Sam’s short for Samantha, but my parents are the only ones who call me that.”
“Well, it’s nice to meet you, Sam. Why don’t you start by telling me about yourself?” I had no intention of hiring her, but I went ahead with the interview anyway, not sure what else to do. I didn’t want to seem like I was discriminating.
“Okay, well, I was born and raised in Oceanside, near San Diego. I’m the youngest of four - three big brothers - and I’m really close with my family. Um… what else?” She paused, her eyes drifting toward the fountain as she thought. “Well, I love the water. I think I must have been a dolphin or something in a past life because I’m happiest when I’m at the beach. I love to swim and surf. I also love animals. When I was younger, I wanted to be a marine biologist or an animal trainer at SeaWorld, but I went into medicine instead.”
“What made you change your mind?”
“Well, when I was in middle school, my youngest brother broke his neck in a swimming accident and became paralyzed,” Sam said matter-of-factly. “Seeing how life-changing that was - not only for him, but for our whole family - made me more interested in neuroscience. I decided to become a doctor so I can help people like my brother.”
“So you’ve had experience working with people with spinal cord injuries?” my mom chimed in. I could tell by the way she was smiling that Sam had won her over with that story, in spite of the blue hair.
“Really just my brother, but yeah. He was a sophomore in high school when he had his accident. Our two older brothers had already moved one - one was in college, and the other was deployed overseas with the Navy - so I was the only one at home to help out with caregiving. My parents did most of it, but I learned a lot from watching them and helping my brother when they weren’t around. He was a C2 complete quad, so he was ventilator-dependent and paralyzed from the neck down.”
I noticed her use of the past tense when talking about her brother, but I didn’t point it out. I was picturing the poor people I’d seen being pushed around the rehab center with portable ventilators strapped to the backs of their wheelchairs and trach tubes hanging out of their throats. Seeing them made me grateful for the function I did have and reminded me that things could always be worse.
“Oh wow,” my mom said sympathetically. “That must have been so hard for him and the rest of your family.”
Sam nodded. “Definitely. But that’s why I applied for this position. I want to help make things easier for another family.” She smiled at me, and I forced myself to smile back. She was a sweet girl. I felt bad about not hiring her.
“Thanks so much for your time today, Sam,” I told her when we finished the interview. “Take care, and we’ll be in touch.”
Once she was out of earshot, my mom turned to me with raised eyebrows. “Well, that was a nice surprise. She was a delight! Won’t you reconsider hiring a woman?”
“I’m sure she’d be great, but no… I still want a male caregiver. Who’s the last candidate?”
My mom sighed and looked down at her list. “Erik O’Doyle. He’s the other med student.”
“Good. Why don’t you go see if he’s here?”
She got up from the table without another word and went into the lobby. When she came back, she was accompanied by a young man wearing a striped rugby shirt and a pair of wrinkled khakis. He was built like Nick, tall and broad-shouldered, but with red hair and freckles.
“Hey, what’s up?” he greeted me casually. “I’m Erik.” He reached out for a handshake, but when he saw my limp hand hanging from the end of my outstretched arm, the fingers loosely curled, he changed courses and gave me a fistbump instead.
“I’m Kevin,” I said, smiling up at him. “It’s nice to meet you.”
“You too, man.” Erik plopped down into an empty seat, and we got started with the interview.
“So, Erik, tell me about yourself.”
“Well, uh, I’m from Orange County. I grew up down the coast in Laguna Beach - and before you ask, yes, I did go to high school with Lauren Conrad.” I wasn’t going to ask, but I nodded anyway, pretending to be impressed. “My mom’s a plastic surgeon, and Dad’s a chiropractor, so I guess you could say medicine’s in my blood.” He grinned. “If you need any work done, by the way, I can hook you up.”
“What kind of doctor do you want to be?” I asked, ignoring his last comment.
“I wanna go into sports medicine, maybe become a team physician for the Chargers or something like that.”
“So you’re a football fan?” I felt relieved to find a connection with him, something I could relate to.
“Oh yeah, big time. I was a first-string quarterback in high school. I was hoping to play for USC, but I blew out my knee in a playoff game junior year. Luckily, I was able to play water polo as a senior, so I got in that way.”
“You went to USC?” I asked, impressed. The University of Southern California was one of the best colleges in the country.
Erik nodded. “Still do, as a matter of fact. I’m a senior there now.”
“Oh… sorry, I thought you were a med student.” I glanced at my mom, who shrugged.
“Technically pre-med,” he said, flashing another grin. “I’m graduating in a couple months and hoping to start med school in the fall.”
He let out an awkward laugh. “Well, I haven’t actually been accepted anywhere yet, but I’m working on it. Hopefully this job will look good on my application. I mean, it’s kind of healthcare-related, right?”
My mom and I exchanged dubious glances. “Do you have any caregiving experience?” she asked.
“Does taking care of drunk frat brothers count? ‘Cause I have a lot of experience with that.” More awkward laughter followed.
My mom wasn’t amused. “Have you ever worked with anyone with a spinal cord injury?” she clarified without cracking a smile.
“No, but I’m a fast learner.” His eyes darted from her to me. “I’m also really strong, so if you need someone to, like, lift you out of your chair and carry you around, I’m your man.”
“Well, the caregiving position would involve more than just transferring Kevin to and from his wheelchair,” my mom explained. “He needs help with everyday activities, like bathing, getting dressed, using the bathroom, and preparing meals. Would you be willing to assist him with those activities as well?”
“Oh yeah, sure,” Erik answered quickly. “Whatever he needs, I’m here for. Just show me what to do, and I’ll do it.”
He seemed eager enough to learn, but I could tell my mom was less than impressed. When the interview ended, she thanked him politely for coming and pointed him toward the exit. Then she turned to me and said, “He seemed clueless.”
I thought she was being a little hard on him. “He’s a college kid,” I said, shrugging. “He’s probably, what, twenty-one? Twenty-two? How many people that age have dealt with something like this?” I waved my arms, gesturing at myself. “He said he was a fast learner.”
“Well, he has a lot to learn,” she replied brusquely. “Whereas the young lady before him had firsthand experience caring for someone with a spinal cord injury. There would be much less of a learning curve if you hired her.”
I sighed. “I told you, I’m not hiring Sam. It’s nothing against her; I just wouldn’t be as comfortable with a woman. I’m gonna go with Greg and Erik.”
“Greg I agree with, but Erik?” She raised her eyebrows. “Honey, really? You heard him; he only wants this job to put on his med school application. Once he gets in, he’ll be out of here, and you’ll have to find someone else.”
“I’ll cross that bridge when I come to it, but right now there is no one else I like better.”
“Let’s keep looking then,” my mom urged. “We can post the help-wanted ad other places and find more people to interview.”
“No,” I said flatly. “This is fine for now. I don’t want to keep interviewing people; I just want to hire someone so I can go home.” I didn’t mean to sound snippy, but I felt drained from the five interviews we had done. My head hurt, and I was hungry and cold from being outside so long. “Can we go back in now? I’m freezing.”
“Of course.” Her face softened as she looked at me with sympathy. “I’m sorry, sweetheart; I knew we should have brought a blanket for you. Why didn’t you say something earlier? We could have gone inside and finished in the cafeteria if you were getting chilly.”
“It’s fine,” I said shortly. “I’m fine.”
I bumped the power button on my wheelchair with my thumb to turn it back on. Then I rested my right hand in the U-shaped joystick handle, which held it in place so I could use my wrist to control the new chair I was using. I liked this one a lot better than the sip and puff chair I had controlled with my mouth. The joystick was more intuitive to use, similar to driving a car or playing an arcade game. It made getting around almost fun. I zipped across the pavement to the building and punched the button outside the accessible doors to make them open for me.
My mom must have sensed my annoyance because she followed me without another word, walking a few feet behind me all the way back to my room. “Well, I should probably get home to Mason,” she said once we made it there. “Unless you wanted to have dinner together in the cafeteria first?”
“No, that’s okay,” I replied. “I’d rather just eat in my room tonight. I’m really tired.” My head was pounding, and there were black spots floating before my eyes. I wondered if I had been sitting up in my wheelchair for too long. I pushed another button on the control panel to lower the back into a reclining position so I could lie down for a while.
“Okay. I’ll leave these applications here so you can call the people you want to hire.” She set a thick folder down on my bedside table with more force than necessary.
“That’s fine. Thanks, Ma.”
She looked down at me, frowning slightly. “Make sure you call their references, too, so you know you’re not letting some lunatic into your home.”
With a sigh of defeat, she said, “Do you want me to help you change back into some more comfortable clothes before I go?”
“Nah, that’s okay,” I said again, remembering what a struggle it had been before. “One of the nurses will come by to do that. You can go now.”
“Well, all right. I’ll see you tomorrow then.” She bent down to kiss my forehead, then pulled back, her frown deepening. “Why are you sweating? I thought you were cold.”
“Yeah, well, I’m warmer now that I’m inside,” I said with a shrug, wanting her to leave so I could close my eyes and rest.
But my mom wasn’t going anywhere. “Your cheeks are flushed. Are you running a fever?” She pressed her palm against my forehead, then the side of my face. Her hand felt like ice. “You feel warm to me.”
“That’s ‘cause your hands are freezing,” I complained.
She shook her head. “Something’s not right. I’m getting a nurse.” Before I could protest, she pressed my call button.
I thought she was overreacting, but when Cole came in a few minutes later, he took one look at me and reached for the thermometer that was mounted on the wall behind my bed. He pointed it at my forehead and frowned when it beeped. “Well, you don’t have a fever,” he said, putting the thermometer back and grabbing a blood pressure cuff instead. As he strapped it around my arm, he added, “You may be dysrelexic.”
I felt a flicker of fear. Autonomic dysreflexia was a complication I had learned about in my quad class, but had yet to experience. It was a paralyzed body’s response to pain or discomfort below the level of injury. Just because I couldn't feel anything from the chest down didn’t mean the nerves in the lower half of my body no longer worked. They just couldn’t send messages through the damaged part of my spinal cord to my brain. Instead, they would trigger my autonomic nervous system when something was amiss, making my blood pressure shoot up to dangerously high levels. “AD is a medical emergency,” Bob had warned us in class. “If you don’t find what’s causing the discomfort and do something about it, your blood pressure will keep climbing, which could cause you to have a stroke.” I suddenly realized I had developed the symptoms he had told us to watch for: a pounding headache, a flushed face, sweating, blurred version, and a feeling of anxiety.
Sure enough, Cole finished checking my blood pressure and immediately sprang into action. “Your pressure’s through the roof!” he exclaimed, as he tore the cuff off my arm and tossed it aside. “We need to sit you up straight to help it come down while we figure out what’s causing this.”
I realized I had made a mistake in reclining my chair. That must have made it worse. I pressed the button to bring myself back into an upright position. My head was swimming.
“What can I do?” I heard my mom ask, her voice high-pitched and panicky.
“Unbutton his pants and shirt, and take off his shoes and socks,” Cole instructed her. “It could just be that his clothes are too tight or twisted somewhere. I’m gonna call the rapid response team, just in case.”
Her fingers shook as they fumbled with the buttons on the outfit she had brought for me. At first, I felt more humiliated than frightened, but that changed when my room filled with people. My mom stepped back out of the way as they surrounded my wheelchair.
“We’re going to move you over to the bed now, Kevin, so we can examine you better,” Cole said. They didn’t bother using the Hoyer lift or helping me transfer myself back into bed this time; they just scooped me up out of my chair and lowered me onto the bed in one swift, coordinated movement. “We need to undress you to check for pressure sores,” he explained, as my limbs spasmed from the abrupt change in position. “Mrs. Richardson, if you could wait in the hall for a few minutes, I’ll come get you when we’re done.”
I could tell by the worried look on my mom’s face that she wasn’t comfortable leaving me like that, but she nodded anyway. “I’ll be right outside, honey,” she told me before she left the room.
As the team of nurses stripped off the rest of my clothes and removed the abdominal binder, my mind raced. Had I remembered to shift my weight every half hour like I was supposed to when I was sitting in my wheelchair? Could a pressure sore have formed in just a few hours while I was outside conducting interviews?
“I don’t see any redness or signs of skin breakdown,” I heard one of the nurses say, as they flipped me onto my stomach to examine my backside.
They rolled me back over and felt my legs up and down, checking for broken bones or other injuries that could be causing pain I couldn’t feel. Ellis was always warning me to watch where my legs were placed while I was in my wheelchair, telling me horror stories of quadriplegics who had broken their ankles by getting their feet wedged under their footplates or caught between one of their wheels and the wall. It seemed crazy to think I could break a bone without feeling it, but with no sensation below the belt, it wasn’t beyond the realm of possibility.
“Ah-ha!” Cole called out suddenly. “I see the problem. There’s a kink in his catheter line. Look…” He pointed something out to the others, then sat me back up so I could see for myself. Sure enough, the length of tubing that ran from the end of my urinary catheter to my leg bag had gotten twisted, preventing the urine from being able to flow through it. There was barely any in the bag, even though it hadn’t been emptied since before the interviews. “Your bladder’s full, that’s all.”
He untangled the tube, and the bag began to fill with dark yellow liquid. I watched with a mixture of disgust and fascination, amazed that something as simple as needing to pee could cause such a reaction.
“This is how quads who cath themselves know when they need to go to the bathroom,” he explained. “You should start to feel better in a few minutes.”
Sure enough, when he checked my blood pressure again five minutes later, it had come back down to its normal range. I’d stopped sweating by that point, my vision had cleared, and the pounding in my head had subsided. Cole emptied the catheter bag and helped me put on a comfortable pair of sweats before he brought my mom back in.
“Are you okay, honey?” she asked, smoothing my sweat-soaked hair back off my forehead as she fussed over me.
“I’m fine, Ma,” I said, and this time, I meant it. “I’m more embarrassed than anything else.”
“You don’t need to be embarrassed. These things happen. But this is exactly why I want you to have a caregiver with experience.” Her voice took on a firmer tone. “What if it had happened at home, and no one knew what to do?”
I shrugged. “We would have called 911. But I know what to do now, and I can teach whoever I hire to help me. It’ll be fine… trust me.”
My mom sucked in a deep breath and let it out slowly. “All right,” she said finally. “I trust you.” She didn’t argue about it any further.
The next day, I called both Greg and Erik and offered them each a job. Greg agreed to come over on weekdays, leaving Erik to care for me on the weekends. They would start whenever I was released from the rehab facility, which I hoped would happen sometime in the next week.
I couldn’t wait to get home.