Mike’s mother had to help him with his pants the next morning, because she didn’t want him wearing sweatpants to the reunion, but he couldn’t get on a pair of khakis by himself. They had gone together last week to buy the pants, after realizing that none of his nice pants fit around his waist any longer, now that he was getting a gut. The saleslady at the store didn’t know quite what to do with Mike—apparently the store didn’t have many handicapped customers. The hardest part was arranging it so that his mother could come into the dressing room with him, since he couldn’t get the pants on himself. But finally, they settled on a nice beige pair.
When Mike had put on a nice shirt, shaved, and brushed his teeth, he logged onto the SCI message board. He was surprised to see the barrage of replies to his post. He skimmed them briefly:
Believe me, Abe, there are many things worse than having a SCI, or any disability—#1 on the list is people like you. Go find another hobby (and another job PLEASE! Are you really a physical therapist??). You may get a few responses to this post, although most people will recognize you for what you are and will not respond. This little diatribe of yours won't even bother anyone. Now shoo!
Cudgel thy brains no more about it, for your dull ass will not mend his pace with beating.
You are the one who is disabled, Abe, if all you think it takes to be happy is the ability to walk and pee on your own. You must be a miserable person in real life if seeing other people being happy upsets you so.
I pity you.
Gee, Abe, when you stand at the bottom of a set of stairs at the end of the day, how can you stand the thought of having to climb them? When you are dancing eye to eye with someone, don't you get angry when your toes are stepped on? And when you are in a hurry, it’s raining, and you just have to run into the store for a pack of smokes, aren't you sad that you don't have a disability and could park closer? And when you are at your alleged job, and you see folks continue with life, bringing the best and worse of their inner selves to the surface and surviving that too, don't you feel sad that you can't reach that level of mentality as well? I don't know how you stand it. Walking all the time, having to buy shoes on a regular basis, having to pee in public places and not in a bag without even thinking about it. I feel sorry for you.
In the past, many of the people who posted inflammatory messages turned out to be disabled folks who think that others of their kind are too sensitive. They post these messages just to poke fun at those who respond. I for one can't understand why some people still take those messages seriously.
Abe should apologize. He is definitely not SCI himself, and just displayed his ignorance and bigotry in his post. I am glad that people on this board can put people like him in his place.
Mike finished reading all the replies to his post and found that he was smiling. Something about the attacks was actually comforting. He self-consciously rubbed his hands against his legs, then began typing:
I need to clarify one thing in the midst of this "slam the PT" tirade you all are on. I am not saying that you can't get on with your life after SCI. I am simply saying that being confined to a wheelchair is not as good a life as you had before your injury. I think people have portrayed me as hateful and a troublemaker, but I see myself as a truthful person who wants to help the patients I work with, not just LIE to them about the road ahead. I really could not look myself in the mirror if I went to work with a newly injured patient and said, "Hey. You will have a great life, even if it is from that wheelchair." Like I said before and I will say again: THAT'S COMPLETE BULLSHIT!!!!!!!!! It’s not going to happen.
Calling me names is a great defense mechanism. Most of the people that frequent this board are prime examples of how losing the use of your body leads to bitterness and denial. My whole purpose for posting was to let you know that I care about my patients but that I am also very truthful with them about quality of life and spinal cord injury. Granted, I don't know firsthand what spinal cord injury is like, but I do see on a daily basis the toll it takes on family, friends, and the SCI survivor.
You may attack me to make yourself feel better, you may call me names to justify yourself as a person, you may even tell me that I don't need to be in this line of work, but I simply say to that: “The truth hurts!” Also, I frequent this board because I think it has a world of good information for newly injured patients. I list this as one of the websites that I refer my patients to when they are searching for SCI info. However, I do not, WILL NOT, tell them that this website with all of its “look what I can do! aren't I doing great? look how super my life is from the chair?” attitudes is what they will find when they leave the convenience of rehab. It’s not fair to make a newly injured person think that life is full of curbcuts and accessible bathrooms when they leave the “handicapped friendly” atmosphere of a rehab setting.
What they will find is a lot of people who won't value them as a person, talk to them as a child, and ignore them in social settings all due to their wheelchairs. It’s not easy and it’s not an equally satisfying life. Getting around in a wheelchair is not the way to go. People need to know this in order to deal REALISTICALLY with their new situation.
You can have a fulfilling life, a meaningful life, you can love and be loved, but it will definitely not be as good as before the days you woke up every day to find out that you still couldn't feel or move and that the wheelchair beside your bed would always be there. That is the point I try to get across. You can hate me or not respond or do whatever the hell you want, but you know that I am telling the truth and I don't think we should continue to LIE to people with SCI by telling them that life in a chair is a GOOD LIFE! I WILL NOT DO THAT, NOT EVER!!!
Mike realized he was almost in tears again by the time he finished the message. He posted it with shaking hands, then quickly logged off the message board and backed away from the computer. His mother was calling him and he had to get going.
Mike’s father brought the car around so that he could get into it easily. Boarding the car was always kind of tricky. He rolled up on the curb by the back seat, lowered one arm of his chair, then pulled himself inside by a series of maneuvers. He belted himself in immediately, before he could start slipping down, then pulled his legs inside one at a time.
“You’re getting good at that, Mikey,” his father commented.
Mike smiled thinly.
His father folded his chair up and put it in the trunk. Mike realized he felt anxious when the chair was out of his reach. He didn’t like thinking that he couldn’t get out of the car without his parents’ help.
The drive to Uncle Fred’s took about two hours. Mike brought reading to do in the car, but he was too anxious to read much. In the old days when he was anxious, he used to get butterflies in his stomach. Now he couldn’t feel his stomach, so he’d just get a strange burning sensation that seemed to come from nowhere in particular.
Mike was relieved when he saw Uncle Fred’s familiar white house come into view. His father pulled into the driveway and the first thing Mike noticed was the long flight of stairs to get into the house. He had forgotten all about those stairs.
“How the hell am I going to get in with all those stairs?” Mike asked.
“Don’t swear, son,” his father said. “We’ll figure something out.”
Uncle Fred, who had seen them driving up, came rushing out of his house to greet them. He took the stairs two at a time and jumped down the last three. “Charlie! Marie! Mikey!” he called. “It’s been ages!”
Mike’s father got out of the car to give his brother a hug. His mother followed and Fred kissed both her cheeks. Then he came around to Mike’s side of the car and tapped on the window. “Hey, kiddo. You coming out?” Mike smiled thinly.
Mike’s father was unloading his wheelchair from the trunk. Fred watched as he unfolded it. “That’s a nice machine you got there,” Fred commented.
Mike opened the door and his father placed the chair alongside him. He repeated the same process he had used to get into the car, pulling his limp legs after his body. He looked up when he finished and saw that Fred was very pale, but trying to hide his discomfort.
“You got a back entrance to the house?” Mike’s father asked.
“Yeah, but the problem is it’s all iced up,” Fred said. “I’m real sorry about the stairs. I didn’t even notice, then Angie mentioned it this morning and it was too late by then. Hey, this kind of problem has got to come up sometimes. What do you do?”
His father thought a minute. “I guess Marie could carry the chair, then you and I could carry Mike.”
Mike’s face flushed. He hated being carried around, like he was an infant or a drunk or something. But it was pointless to protest. It was the only way to get into the house. He spun the wheels of his chair and it didn’t move. He tried again and got the same effect. He looked down and saw that the driveway was covered in ice.
“You need some help, Mike?” his father asked.
Mike nodded. His father pushed him to the base of the stairs. Mike undid his belt, then he grabbed the arms of the chair to keep from slipping. Fred took hold of his legs and his father grabbed underneath his arms and the two of them hoisted him into the air. They carried him up the flight of stairs into the house, where Aunt Angie was anxiously waiting. She got to see the show of Mike hanging in the air until his mother got the wheelchair to the top and they were able to place him in it. Mike’s hands were shaking when he buckled himself in. His father adjusted his legs for him so that they were in the footrests and not all twisted.
“Gaining a little weight there, huh Mikey?” Fred teased as he caught his breath. He tapped Mike’s gut with his finger.
“A little,” Mike replied.
“You look wonderful, Michael,” Angie said in a slightly choked voice.
“He’s a trooper,” Fred said, putting a hand on Mike’s shoulder.
Mike looked around his uncle’s house. It seemed a lot bigger somehow. And he hadn’t remembered there being so many stairs. There were stairs to get to the play room downstairs, stairs to get from the den (where they were now) to the dining room (luckily there were only two, because he was definitely going to have to make that trip), and there were stairs to get up to the bedrooms.
Everyone was gathered in the den, talking and drinking wine and eating crackers. Mike could have used some wine himself, but he knew alcohol was a diuretic and he didn’t want to risk pissing in his pants. He hesitated in the doorway, afraid to go in. None of these people had ever seen him in a wheelchair before.
“Go on, Mikey,” Fred urged. “Everyone wants to see you.”
Mike rolled his chair into the room. It was carpeted, so he was able to move softly. Nobody seemed to notice him at first, so he went to the table and took a cracker. Suddenly, he felt a hand tousle his hair and he craned his neck to see.
“Mikey!” It was his grandfather. His grandmother was by his side. “We were afraid you weren’t coming!”
They both leaned in to give him big wet kisses on his cheek. His grandmother was teary-eyed, like Aunt Angie had been. She was trying to smile. “You look so good, Mike.”
“How are you holding up?” his grandfather asked.
Mike nodded. “I’m…doing better.”
“That’s good, that’s real good,” his grandfather said. “You look good too. Hey, you want to go talk by the couch, so me and Grandma can sit down too?”
Mike smiled. “Yeah, sure.”
People were beginning to notice Mike now. He felt everyone’s eyes on him and the loud talk had turned into a low buzz. His father’s cousin, George, was sitting on the couch and said in a too-loud voice: “Hey, Mike, you hurt your leg running?”
The back of Mike’s neck burned. Nobody said anything and Mike answered, “No. I was in a car accident in May and I’m paralyzed from the chest down.”
George frowned. “You’re shitting me! How long are you going to be in that thing?” George was always slow to catch on.
“For the rest of my life,” Mike replied, his voice even and numb. “It’s permanent. The paralysis is permanent.”
George’s eyes widened. “Oh, shit,” he said. “Oh, shit. I’m so sorry, Mike. Shit. That’s terrible. I’m sorry.”
“It’s okay,” Mike said. “You didn’t know.”
Mike turned and saw that his grandmother was crying into a tissue. He rubbed his numb legs as he looked at her. He had known something like this would happen, which is why he hadn’t wanted to come here in the first place. He had arrived only a few minutes ago and already there was a scene.
His grandmother wiped her eyes quickly. “I’m sorry, Mike,” she managed. “I just…it’s so hard to see you like this. I remember you as a little kid, running around, and…”
Fred jumped in and took his mother’s arm. “Come on, Mom. Let’s go in the other room. I don’t think Mike needs this right now.”
She began to protest, then allowed him to lead her away. Gradually, the silence diminished and people began talking again, but it wasn’t as animated as before.
Mike’s grandfather nudged his arm. “Hey, you okay?”
“It’s just hard the first time,” his grandfather said. “She’s not going to do this every time she sees you. It’s just…you know…”
“Hey, you’re still the same kid,” his grandfather said in a reassuring voice. “You’re still our Mikey, no matter what. What’s a chair, right? I sit in a chair most of the day, anyway.”
Mike nodded. I’m just like you, Grandpa, he thought. I sit in a chair all day, I’m impotent, and I’m incontinent.
“If you can get a good job and find a nice wife, that’s all that matters,” his grandfather said. “So you can’t get up a few stairs. Big deal, right?”
Except this house was full of stairs and he was going to have to be carried everywhere. Nobody who could walk would notice something like that.
“And you can move your arms, at least,” he continued. “Up in Vermont, we met this guy who was shot in the neck. He needed someone to feed him and wipe his face when he was done.”
On this, his grandfather had a point. T2 was the highest level of injury where there was full hand movement. If he had broken his spine at the T1 level, he would have some trouble moving his hands. Any higher than that and he’d be a quadriplegic, with limited movement of his upper body. In rehab, he had seen lots of people who couldn’t feel or move their hands or had weak triceps. And there were even guys who couldn’t move their arms at all and had to rely on a blowing mechanism to operate their wheelchairs. Mike’s arms and hands were as good as ever and he knew he should be grateful for that.
“Mikey!” a voice called from the entrance to the den. Mike turned and saw his cousin Dennis standing there with a pretty girl at his side.
Mike smiled despite himself. Dennis seemed so jubilant. “Hey, Dennis,” Mike said.
Dennis and the girl were holding hands. He pulled her over to where Mike and his grandfather were talking. “This is Wendy,” he introduced her.
“Nice to meet you,” Wendy said with a smile.
“Wendy has to leave,” Dennis explained. “For some reason, she doesn’t want to take part in this delightful family event.”
Wendy laughed. She kissed Dennis on the mouth, then left, presumably to go home. Mike wished he could leave too.
“Grampa,” Dennis said, “mind if I steal Mike for a little while?”
His grandfather nodded. “Go ahead. Mike and I can talk later.” He reached out and tousled Mike’s hair again.
Mike followed Dennis out of the den. Dennis hesitated at the base of the stairs to get to his room. “Can’t go up there, can we?” he said thoughtfully.
“Nope,” Mike answered.
“How about outside?”
“It’s too cold.” Mike had to be especially careful of the cold, now that he couldn’t feel his legs. Movement is what keeps the blood flowing in the extremities, and without that movement there was a danger of frostbite. Even though Mike couldn’t feel his legs, he didn’t want to lose them. Now that it was getting very cold, Mike often put a blanket over his legs when he went outside, just to be extra careful.
“Let’s check out the dining room,” Dennis decided. “Nobody will be there this early.”
Of course, there were still those two steps to get up to the dining room. Mike backed up into them, and Dennis took the handles of his chair and pulled him up the steps. Then they went over to the empty dining room table. Dennis took a seat and pulled out a chair so that Mike would have a place to park his wheelchair.
“So Wendy is pretty hot, right?” Dennis said with a grin. “Can you believe I got a girl like that?”
“She’s nice,” Mike agreed.
“Better than nice, man,” Dennis said, shaking his head. “I’m just trying to see how long I can hold onto that fine piece of ass.”
Mike laughed and so did Dennis. Then Dennis focused on Mike and his voice became very serious. “Really, Mike, how’ve you been? You don’t look so good.”
Mike lowered his eyes. “I don’t know. It’s been tough. It’s really hard to adjust to this.” He gestured down at his motionless legs.
“No kidding,” Dennis said. “I don’t know what the hell I’d do if I were in your shoes.”
“You’d deal the way I do,” Mike answered. “You’d adjust to the fact that your life is never going to be as good as it was before, and you have to rely on people for practically everything.” Mike shook his head at Dennis’ expression. “Well, it’s true.”
“Yeah, so your life is different than before,” Dennis admitted. “But what was your life before? So you looked good and got girls easy. I mean, that’s fine when you’re 23, but that’s not good enough when you’re 30. You can’t just be going to clubs all the time when you’re 30. It’s pathetic.”
“So my life had no direction,” Mike said with a shrug. “I could have gotten some direction without getting paralyzed.”
“Yeah, but would you?”
Mike stared at his cousin. He wasn’t about to be convinced that this chair was a good thing. “Try sticking a tube up your dick so that you can pee, then say that.”
Dennis winced. “Aw fuck, Mikey…you’re joking, right?”
“Aw, Mikey,” Dennis moaned. “You mean you can’t feel…?”
“No, I can’t feel anything down there.”
Dennis inhaled deeply. “There are drugs, aren’t there? There’s Viagra, that’s supposed to work.”
“Maybe I can get an erection, but I still won’t be able to feel it.”
“I’m sorry, man,” Dennis muttered. “That shit really sucks.”
“That’s my life now,” Mike said quietly. “I can’t have sex, I can’t pee on my own, I lost all my friends because I make them uncomfortable now…”
“Listen, Mike,” Dennis said. “You were always my favorite cousin. You’re the only one out of all those fuckers who’s actually a decent guy. And you’re still the same guy. I always looked up to you and I still do. I know you’ll bounce back.”
Mike sighed. “It sucks. Two seconds, my back breaks, and my life is over. Some fucker cut me off. Did you know about that? He cut me off, I’m paralyzed for the rest of my life, he gets away without a scratch on his body or his driving record.”
“When I heard about your accident,” Dennis said, “I was numb for about a week. I couldn’t believe it. Every day I was like, ‘I’m gonna go visit Mikey,” but then I’d chicken out. I was afraid to see you like that.”
“Turned out I was worried over nothing,” Dennis said with a smile. “You’re still the same guy you always were.”
No, Mike thought. I’m not the same. I’ll never be the same again.
To be continued...