Love in a Chair - 17. Friends & Family

Love in a Chair

A story by Altimexis

Chapter 17 - Friends & Family

The rest of the week went by quickly and soon it was Saturday and time for Brian’s first therapeutic leave - a chance for him to get out of the rehab center and to try out his wheelchair skills in the real world and to visit his own home. Because his parents’ SUVs were too high off the ground to transfer into, Aaron’s dad agreed to pick him up. Brian transferred himself into the shotgun seat of their remaining Jetta and Aaron folded the wheelchair and placed it in the trunk.

As they drove home, the boys chatted excitedly about the things they would do together. They thought they might take in a movie and go out for lunch. First, however, they would go to Brian’s house. As much as they would have liked to go to Aaron’s house for a little solitary exploration, they realized it just wasn’t practical. Aaron’s house was an older colonial with a lot of steps at the entrance and no bathrooms on the first floor. Brian’s house, on the other hand, was nearly ideal. It was a bungalow with everything on one floor and only one step to get inside. A contractor was stopping by next week to build a small ramp and to start work on enlarging Brian’s bathroom to make it fully wheelchair accessible.

“Wow, Aaron. I was just thinking. In a couple of weeks, you’ll have your license and be able to drive me everywhere.”

“Sorry, bud, but you’ll probably have your license before I do.”

“Huh?”

“Even if I’m cleared of the personal injury charge, I’m still guilty of driving without a license. I won’t be eligible now until I turn eighteen.”

“Oh man, that really sucks!” Brian started to cry softly.

“What’s wrong, baby?”

“It’s all my fault. If I hadn’t been so horny, none of this would have happened.”

“I was just a horny as you. Please don’t cry. You got the worse end of the deal by far. Waiting until I turn eighteen is a small price to pay.”

Just then Aaron’s dad spoke up. “Aaron, I’ve been speaking with Bill about it. If they find the guy who was driving the SUV, in addition to collecting on the insurance, he thinks we have a good chance of getting the license violation dropped, too.”

“Dad, thanks, but I don’t really want to drive after what happened.”

“And that’s exactly why we need to fight this. If you don’t get back to driving, you’ll never confront your demons. I don’t want you to be afraid of driving. You did something wrong, but all of us believe you when you say that you didn’t cause the accident. You’ve always been very responsible. In spite of what happened, your mother and I trust you. We know you won’t try to deceive us again. We’re here to help you, son. We want to help both of you boys in any way we can, but we need to work as a team and having your license will make a big difference in Brian’s quality of life.”

“Somehow I don’t think that Brian’s parents are going to let me drive him anytime soon, Dad. I know they’re a lot more accepting of me and Brian’s relationship now, but I doubt they’re ready to forgive me for what happened.”

Jim smiled as he said, “Brian, Ruth and I have had a long talk with your folks, and we’ve realized that with their professional commitments, they can’t give the full time and careful attention to you that Aaron can. Actually Aaron, they’ve already agreed to testify on your behalf.” Both Aaron and Brian had to pick their jaws off the floor. “I think you’ll find they’ve come a long way with this.”

They pulled up in front of the Sandler residence and both of Brian’s parents came outside. Aaron ran to the trunk to get Brian’s wheelchair for him, but found he couldn’t lift the chair out without experiencing excruciating pain from his broken ribs. His dad came to the rescue and lifted it out, so Aaron could set it up. Brian transferred himself into the wheelchair effortlessly, as if he’d been doing it all his life. Jim helped Aaron tip the wheelchair up the one step into the house. Brian wheeled himself inside and his parents each gave him a hug.

Aaron and his dad followed them inside and the five of them chatted for a while. They talked about their plans for the day and agreed that Aaron and Brian would take in a movie at the cineplex, and get lunch there as well. Then they would tool around the mall for a while and meet up with Larry, Cindy, Jackie, Sharon, Adam and Jenny.

Aaron’s dad would pick Brian and Aaron up and drop Brian off at his parents at four o’clock so he could spend some quality time alone with his folks for the rest of the afternoon. The two sets of parents and the boys would then go out for dinner at six, and then return Brian to the rehab center after that.

Putting these plans into actioin turned out to be another matter. Getting to the cineplex was easy enough, but when Brian tried to open the door on his own as he wanted to, he found it to be very heavy and it just wouldn’t budge. He kept trying when Aaron finally just reached around Brian and opened the door for him, wincing from the pain as the door tugged back on his broken ribs. Brian felt crestfallen.

“You should have let me do that, Aaron.”

“No, it’s not your fault that you couldn’t open it. I’m going to speak to the manager.”

Aaron asked to speak to the manager and they had to wait until it was nearly time for the movie to start for the manager to come out. Aaron didn’t waste any time when he finally did.

“Are you aware that your entry doors are not ADA-compliant?” The manager didn’t know what to say. Aaron continued, “The law stipulates that your doors must be able to be opened by someone in a wheelchair. My friend here wasn’t able to because it’s too heavy and needs a power assist. I hope this will be taken care of expeditiously or you’ll be hearing from the Center for Disability Rights. Do I make myself clear?”

The manager could do little else but mumble an apology and give the boys free movie passes.

“That was awesome, Aaron.”

“I’d walk on water for you, my boy.” Aaron smiled back.

Once inside the theater, they found that the accommodations for wheelchairs were far from ideal. They had a choice of either sitting way too close to the screen, or sitting in the very back of the theater. They chose the latter. After the movie, they found that the concession counters at the food court were too high for Brian to look over them, and the seating did not provide adequate space for Brian’s wheelchair.

Getting from the cineplex to the mall was also an ordeal. The trip across the parking lot was meant to be made by car rather than on foot, and definitely not by wheelchair. There was a gully separating the movie parking lot from the mall parking lot and while a person could walk across it, a wheelchair certainly could not cross. The boys were forced to detour a good half mile to get around it, leaving Brian in particular exhausted and with sore arms.

The entry to the mall had doors that were also too difficult to open and the boys, once again, had to find the mall manager to complain.

Once inside the mall, it was a lot easier to maneuver around, but the stores themselves were a nightmare when it came to browsing the aisles in a wheelchair. Racks were spaced way too close together and in random patterns that forced a lot of wheeling around.

People tended to glare at the boys when they dared to ask them to move so they could get through. Sadly, it was just more practical for Brian to stay put and let Aaron do the browsing for him.

The day was a real eye-opener for both boys and they realized that being gay was a lot less of a burden than being in a wheelchair. As the day progressed, Brian’s façade started to crumble and his mood became increasingly depressed.

Finally, it was time to meet up with their friends and they continued to cruise the mall with Larry, Cindy, Jackie, Sharon, Adam and Jenny chatting about Brian’s progress in the rehab center and about life in general. At one point, Brian informed them that it was time for him to cath himself. He excused himself and headed to the nearest men’s room. Aaron went with him in spite of his protests, just to be sure that everything was OK. It was a good thing he did as the ‘handicap’ stall wasn’t nearly big enough for him to maneuver his wheelchair, let alone lay out the equipment he needed. The sink area lacked any sort of space to put things down, so Brian really did need Aaron to hold things for him.

Lacking an adequate stall, Brian was forced to do everything out in the open for all to see. It was embarrassing to say the least. First he exposed the head of his dick and had Aaron open his cath kit. He donned surgical gloves and used an antiseptic sponge to wipe the head of his penis, taking particular care to cleanse the slit. He opened a package of sterile KY jelly and squeezed out a generous dollop into a tray that Aaron held for him. Brian opened the package containing a sterile catheter and he then lubed up the tip in the KY jelly. He pushed the tip of the catheter into his slit and advanced it up into his penis, causing Aaron to cringe at the sight. Soon a trickle of yellow urine was flowing through the clear catheter into the tray that Aaron held. When he finished, Brian withdrew the catheter, washed off the head of his dick and zipped up. Aaron dumped the urine in a nearby toilet and then threw the remnants of the cath kit away.

“I had no idea this was so involved,” Aaron remarked as he washed his hands.

“I do this four times a day, and sometimes six times if I drink a lot. At least when I go home, I won’t need to carry around these sterile cath kits. I’ll be able to use reusable catheters and boil them, but they don’t want me to do that yet.

“Aaron, could you do me a favor and not talk to the other guys about this?”

“Sure, Brian. No problem.”

They rejoined their friends and went for some ice cream before deciding that they’d had enough of doing the mall thing, especially when they all saw how difficult it was for Brian. They called Larry’s father, who picked them up a bit early.

As he was dropped off at his house, Brian said, “Hey, don’t feel sorry for me, guys. I’m having a blast! This beats a day at the rehab center anytime.” However it was evident to everyone but Brian that he was far from OK. There wasn’t even a smile on his face when he said his goodbyes.

Later that evening, Aaron and his parents went to pick up Brian and they all went to a fine restaurant nearby - one of Brian’s favorites. That’s when the ‘fun’ began. When they arrived, they found that there was a series of steps to get to the main dining area, which was where their reserved table was located. There was no accessible way to reach their table and Brian flat out refused to allow himself to be carried up there as the manager had suggested. Since it was a busy night, there was nothing available in the back dining area, which was the only part of the restaurant that was accessible, and so they had to wait nearly 45 minutes until something opened up. The manager treated them to complementary drinks while they waited, but that was small consolation. Finally, they were led through the kitchen to their table, as this was the only accessible route.

When the waiter took their orders, he spoke down to Brian and very loudly and slowly. Finally, Brian couldn’t stand it any longer. He practically shouted at the waiter, “Hey, I’m not stupid. The only difference between me and all the other people at this table is that my chair has wheels.” When he saw that the waiter was genuinely flustered, he became crestfallen and said, “I’m sorry, it’s just that I’ve had a really bad day. This is my first time out in public since my accident and a lot of people have treated me the way you just did.”

With that, service improved considerably and the rest of the meal was quite enjoyable, except of course for the return trip through the kitchen.

Although Brian handled himself very well throughout the day, he was visibly shaken by the time the boys got back to Brian’s house. Life would be a lot harder from now on and a lot of simple things that everyone else took for granted would require careful planning and a lot of improvising. As the gravity of this sunk in, they were very quiet on the trip back to the rehab center. They were much later getting back than planned and had to get security to let Brian back inside.

As the boys said goodbye to each other, Aaron said, “Brian, please remember one thing. You’re not alone in any of this. I know today was rough, but I’ll be with you every step of the way.”

For the first time since the accident, Brian broke down and cried. Aaron held him tightly in his arms and Brian finally started to share his grief.

Monday was a regular school day for Aaron, but Tuesday was Brian’s family conference and, as promised, Aaron was invited. He’d been given permission to take off from his afternoon classes. Alan and June Sandler picked him up at the school and they arrived at the rehab center with plenty of time to spare.

“Hi babe, you ready for the family meeting?” Brian asked as Aaron hugged him.

“You bet.”

“My parents around?”

“They went to grab some coffee. They should be here any minute now.”

And as if on cue, they both walked in, followed by Pattie, Brian’s social worker. She told everyone to move to the family lounge, which they promptly did, followed by Brian’s therapists, nurse, the resident and doctor. After a series of introductions, Brian’s resident, Kathy Lipton, began speaking.

“Dr. Stevens and I are responsible for handling Brian’s medical care while he’s here at the rehab center and for leading the team taking care of him. We will also follow Brian’s progress in outpatient therapies when he leaves here and Dr. Stevens will see Brian for his annual SCI checkups. There are several important medical issues that we need to discuss with you before Brian leaves the rehab center and I will start with these now.

“First of all, as you know, Brian has an increased risk of getting blood clots in his legs since he can’t move them. To counteract this, we’ve been giving him shots with a blood thinner - a special kind of heparin - and because he has no functioning muscles in his legs, he’ll need to continue those shots when he goes home. He’s been giving himself the shots and will need to do so for about another month. Now the reason we take this very seriously is that if a large blood clot forms in his legs and breaks away, it can go to his lungs and cause a pulmonary embolus, which is a blood clot that goes to the lungs. If that happens, it can be very serious and could even kill him. I don’t want to scare you, but you need to watch very carefully for any signs of a blood clot in Brian’s legs. The blood thinner helps, but it doesn’t eliminate the risk. If you see any swelling in either leg or if one of them is warm or feels hard, you need to get him to an emergency room right away. Do you have any questions about any of this?”

It was sobering to hear, but everyone understood and just nodded. Dr. Lipton continued, “Two of the other major medical issues Brian has to deal with are his bladder and his bowel function. I’ll start with the bladder. Now as you all know, Brian has been catheterizing himself four to six times a day to empty his bladder. Eventually, Brian’s bladder will start contracting on its own, but he won’t have any control over it. Worse yet, when his bladder contracts, the sphincter, which is the valve that opens to let him urinate, may contract at the same time, forcing much of his urine back up into the kidneys. Over time this can damage the kidneys, even to the point of needing to go on dialysis. That is why we will have Brian seeing a urologist on a regular basis. Once Brian starts to have spontaneous voiding, there are a number of options that he can consider to prevent having accidents and to prevent kidney damage.”

“How about the suprapubic tube?” Aaron asked.

Dr. Stevens chuckled. “I see you’ve been reading up on this. The suprapubic tube is an excellent option for quadriplegics who don’t have the use of their hands. I tend to avoid using it for two major reasons. First of all, they significantly reduce your fertility. I know that may not be a concern for you, but you never know what the future might bring and I strongly suspect that it will one day be possible for gay men to father children using genetic material from both partners.”

Aaron and Brian had never thought about the possibility of one day being parents. Dr. Stevens continued, “The other thing is that there is a slightly increased risk of bladder cancer. For these reasons and particularly because you have good hand function, I’d prefer to use medications to prevent accidents and to have Brian continue to catheterize himself. There are other options to consider as well and you can discuss them with your urologist. Do you have other questions regarding bladder function?”

When no one spoke, Dr. Lipton continued, “Bowel function is also an important issue. We use a combination of stool softeners and a stimulant laxative, senna, to keep Brian regular. The whole premise of keeping Brian continent is through a regular bowel program. This means fully evacuating his bowels every other day so that he is continent in between. Brian has learned to give himself his own suppositories and has been having good results. Eventually, Brian, you will likely run into some difficulties and you’ll need to be aware of them. First of all, you may find that some foods alter your pattern, particularly spicy foods, and may result in an unplanned bowel movement. Eventually, you’ll learn how your body reacts to certain foods, and what foods to avoid. You may also find that you can use diet alone to regulate your bowels without the need for medications, but you should do this cautiously. Eventually you may find you don’t need to use suppositories and that you can kick off your bowel program by digital stimulation alone by sticking your gloved finger into your anus and gently pulling forward. You should discuss this with us before trying it at home.”

“I could help with that,” Aaron joked and just about everyone else in the room turned red.

“The one thing you need to watch for is fecal impaction,” Dr. Lipton continued. “If you notice that your bowel program is producing poor results, it could be that your bowels are becoming filled with hardened stool. Paradoxically, your stool may become loose and watery, but this is because stuff is seeping down around the hardened stool. If this happens, you need to contact us immediately, as an impaction can also be a life-threatening emergency. Do you understand this?”

Everyone again nodded. Dr. Lipton continued, “The three remaining things I need to raise with you are, your skin, spasticity and autonomic dysreflexia. First of all, your skin. As you know, the nurses have been turning you from side to back to side every two hours when you’re in bed. Your skin will slowly build tolerance with time and we’ll start to spread this interval out while you’re here. When you go home, you’ll need to set your alarm clock to wake you up at night so you can turn yourself in bed. You’ll also need to continue to do your pressure reliefs when you’re up in your wheelchair.” With that, Brian used his arms to lift himself up off his butt for a few seconds and then let himself back down.

“Brian, you need to inspect your skin every single day. If you see any areas of redness that don’t blanch when you press on them, it means that you’ve already done some damage and need to stay off those areas until they go away. If you see any areas of blistering or breakdown, you need to call us immediately. Pressure ulcers are a serious matter that could land you in the hospital for months at a time. Do you understand this?”

Brian nodded his head. Dr. Lipton went on, “You have not had significant problems with spasticity since you’ve been here and you just need to know that we have medications that can control spasms if they become a problem for you. The bottom line is that it’s normal for muscle spasms to occur and usually that is a good thing, as it helps maintain muscle tone. However, if your spasms become severe enough to wake you or your partner at night, or if they interfere with your transfers or your self-care, we do have ways to deal with them. They may also be a sign of an infection or another problem that we can fix. You just need to let us know. Autonomic dysreflexia is another matter. Your level of injury is right on the border line. With lesions at T6 or above, your brain is disconnected from your sympathetic nervous system. Because of this, even a minor stimulus such as a full bladder can cause you’re blood pressure to shoot sky high. The most common symptom is a severe, pounding headache. If this happens, the first thing to do is to empty your bladder. If this doesn’t work, you need to look for another cause, such as a full bowel, a pressure sore or anything else that could be causing pain, even though you can’t feel it. If none of this works, go to Emergency. We don’t want you having a stroke. OK?”

“I’ve heard that AD can happen from having sex.” Aaron stated.

“Yes, that’s a common problem. If that happens, let us know and we’ll see if we can find strategies to avoid it. Speaking of sex, I know you boys must have a lot of questions about sex.”

“Actually, we’ve gotten a lot of information and advice online from other gay people with SCI,” Aaron said.

“Well if you have any further questions, feel free to call me,” Dr. Stevens added.

“I have a question,” Brian said, surprising even Aaron. “When Aaron and I have sex, we always use a condom. . . .”

“That’s a very wise thing to do, Brian. Everyone needs to practice safer sex, and especially people with disabilities.”

“Why especially?”

“Well, you aren’t able to feel your genitals and you wouldn’t know if you had an open sore. Also, your bowel program makes you more prone to hemorrhoids and other rectal lesions. These things could facilitate the spread of STDs during sex.”

“But before I met Aaron, I was a virgin, and Aaron was virgin, so why do we still need to use condoms?”

“Brian, there’s a whole room full of people here. I think this is a little personal to discuss in a family meeting,” Brian’s mother advised.

“I’m sorry for embarrassing you mom, but it’s not like I’m asking for details. These are all medical people here and I just want an answer to a simple question. Dr. Stevens, is there any reason for Aaron and I to use condoms if we were both virgins before we met?”

“Brian, you may not want to hear this, but I don’t think that any teenager is ready to promise complete and total fidelity. . . .”

“But that wasn’t my question! Look, I probably can’t ejaculate with sex, right? . . . And with my limited mobility, there’s no way I could sneak around and have sex without other people knowing about it. What I’m saying is that the risk of me transmitting an STD to Aaron is infinitesimal, right?”

“Brian, I think it would be a grave mistake to assume that you can’t transmit STDs.”

“OK, fine. . . . but could I at least have myself tested for HIV and STDs while I’m here?”

“Well, there should be an HIV test on file from when you were in Emergency, and we can look that up with your permission. The rest we can certainly test if you would like us to.”

“I’d like that very much. Thanks. I just want everyone to know that I’m completely faithful to my boyfriend.”

“That still doesn’t change anything, Brian.” Dr. Stevens said with exasperation. Rubbing his hands together, he continued, “Well, I know that this has all been a lot to absorb and I’m always happy to talk to any of you. Brian and I have already talked about his prognosis, but I know the rest of you are also involved. The degree and timing of recovery from SCI is highly variable, with any recovery occurring over a period of months or even years. As Brian may have already told you, dramatic improvement from his type of injury is uncommon, but not unheard of. I always like to hold out a little bit of hope, and there has been a lot of encouraging research in recent years. I’m more optimistic about this than I have ever been.”

“That would be nice, doc, but I’m dealing with the here and now. You know . . . my legs always feel like they’re on fire. Is that normal?”

“Have you told anyone about it, Brian?”

“No sir. I didn’t want to bother anyone.”

“Dr. Lipton, did you ever ask Brian about his level of pain?”

“No, Dr. Stevens. He never complained about it before and he always seemed so good-natured that it never dawned on me he could be in pain. The daily VAS has consistently been only a one or two.”

“But I’m not in pain,” Brian objected. “My legs just burn all the time.”

“Brian,” Dr. Stevens continued, “How bad is this feeling. On a scale from zero to ten, with zero being no discomfort at all and ten being the worst discomfort you could ever imagine, how bad is this burning feeling right now?”

“Brian thought for a moment and then said, “I guess I’d rate it at around a five, but at night it can sometimes be pretty intense . . . as high as an eight or nine.”

Dr. Stevens turned to Kathy Lipton and said, “Let this be an important lesson. Don’t ever take a person’s pain for granted. Some people just won’t complain about it unless you ask, and some like Brian won’t even think of it as pain.” He turned back to Brian. “Brian, it’s common to have phantom body pain, just as amputees have phantom limb pain. Although it may not be what you think of as pain, it hurts nonetheless and we call it neuropathic pain. Fortunately there are very good drugs for treating it. We’re going to start you tonight on a drug called pregabalin. It may make you sleepy or affect your equilibrium a bit, but it won’t take long to get used to it and we’ll increase the dosage until we get your pain under control. No one should have to live with that kind of pain. We’re here to help you.”

“Why didn’t you tell me about it?” Aaron asked.

“I just didn’t want to bother you.”

“Honey, you’ll never be a bother to me.”

The rest of the meeting was pretty mundane with each therapist explaining more to Aaron and Brian’s parents than to Brian what they were working on. There was some talk about ramps and home modifications, but little needed to be said since Brian’s parents already had the necessary information. There was also discussion on Brian’s upcoming outpatient program and a recommendation that he attend a satellite office of the rehab center, located just a few minutes from Brian’s home. Everyone agreed that that sounded like a good idea.

Finally, the neuropsychologist, Dr. Katz, spoke. “Well, I’d like to say that Brian is making progress, but frankly, he hasn’t spent a lot of time with me. Not that I haven’t offered my time, but Brian has managed to skip most of his sessions and hasn’t been all that interested in talking about what happened to him. The one thing that we did accomplish was to complete a battery of neurocognitive tests. We do this anytime someone has a loss of consciousness that suggests the possibility of a brain injury. I found no evidence of any brain damage whatsoever. In fact, as should probably be no surprise to anyone here, Brian tests extremely well. He is performing at or above the 95th percentile for his peers.

“This probably has a lot to do with why Brian has been avoiding me when it comes to talking about the psychological effects of his injury. He’s very intelligent and tends to rationalize things. Although this may appear to be the smart thing to do and it does help him with his rehab, it only helps him to avoid the grieving process that ultimately must come. In fact, all of you will go through a period of adjustment. For this reason I strongly recommend that you seek counseling after Brian is discharged.”

“I’m sorry I couldn’t come in,” Aaron chimed in, “but I had school and can’t come during the school day.” He turned to face Brian. “Honey, you really do need some counseling. I know I do. I got the name of someone from when we were in Emergency. Why don’t we go together once you’re home?”

“I dunno, Aaron. I think I’m fine now. I really don’t need any help.”

“But on Saturday, you were in tears. Why don’t you go with Aaron and just give it a try?” Brian’s mother suggested. Brian knew they wouldn’t drop it until he agreed, so he reluctantly did so.

At the end, Dr. Stevens informed Brian, his parents, and Aaron that they were shooting for a discharge date of Tuesday, one week away. Everyone was a bit surprised at how short the inpatient rehab program was, but Dr. Stevens explained that Brian had made such excellent progress that there really wasn’t any reason for him to stay longer, assuming there were no problems during his therapeutic leave the next weekend. As Dr. Stevens explained, home is itself a form of rehab and it was time for Brian to move on to the next phase of the process.

After everyone else had had their turn, the social worker stayed behind to talk to Brian’s parents about the resources available to Brian. Brian and Aaron went back to Brian’s room to talk about the discussion that came out of the family meeting.

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