Love in a Chair - 25. Coming Apart

Love in a Chair

A story by Altimexis

Chapter 25 - Coming Apart at the Seams

The start of the school year was hectic for both Aaron and Brian, but for largely different reasons. Aaron was starting to get serious about studying for the SAT’s - yeah, he knew it wasn’t supposed to make a difference - but he wanted to go to a top engineering school, and that meant he needed top scores.

Secondly, he took on a new pet project. Having seen the pain that Darren was going through, he realized that by the time kids reached high school, it was too late to introduce awareness of gay issues into students’ lives. Kids needed to know about what it means to be gay long before they reached high school, and so Aaron started on a crusade to reach middle schoolers. Although simple in principle, he met stiff resistance from just about everyone - both in school administration and with parents. All he wanted was the opportunity to talk to sixth grade students as part of their sex education course, and to reach out to seventh and eight graders as well. The GSA was all for it and a lot of the members joined in the fight, but the only way this was going to happen was to go to the school board, and that meant dealing with politics - an arena in which Aaron had no prior experience.

Brian, for his part, became much busier than he ever anticipated when he ran for sophomore class president. Along with his regular schoolwork and leading the Jazz Ensemble, he found he had new responsibilities in planning for class and school functions that took up far more of his time than he could have dreamed of. If he’d known just how much of an imposition it would be on his life, he would have never accepted the nomination, but he knew how important it was for him to be there, representing people with disabilities and gay teens in a very important and visible role.

Sadly, the boys’ new responsibilities occupied a lot of their time and opportunities for intimacy were fleeting. It had been almost a month since they’d last been intimate when Aaron and Brian finally got together in late September for a night of fun. They completed Brian’s bowel program and enema and Aaron cathed him in the usual way, but both boys were startled when Brian’s legs jumped during the enema, almost throwing him out of his shower chair.

“Man, Brian, I’ve never seen you have spasms like that before.”

“I’ve been noticing spasms a lot more often over the past few weeks, but just assumed it was because of all the pressure I’ve been under.”

After he was done cathing Brian, Aaron said, “Well, your urine is certainly clear enough, so it couldn’t be a urinary infection. Maybe we’d better talk to Dr. Stevens at the rehab center.”

“We can call him on Monday. There’s other things I’d like to do right now,” Brian said, winking at his lover as they then retired to his bedroom for a night of pleasure. They embraced and kissed passionately and Aaron reached down and started to play with one of Brian’s nipple rings.

Suddenly Brian’s eyes flew open and he looked at Aaron in obvious pain. “I . . . I . . . Aaron, I barely felt that, and it burned like crazy!”

“How about the other one?” Aaron asked as he gently touched the other nipple ring.

“Not quite as bad, but it still doesn’t feel normal. OH MY GOD . . . I’m losing my nips!” Brian started crying hysterically as Aaron thought about what he should do. Something was wrong. Something was very wrong.

“Brian, we need to get you to Emergency. I’ve read something about this on the Internet. We need to get an MRI of your spine right away, before it gets even worse.” Both boys were now crying. “C’mon, I’ll help you dress.”

Brian’s parents were out, so Aaron had to drive his boyfriend to the hospital. He made the trip in record time and barged in, pushing Brian’s wheelchair at light-speed. Aaron kept insisting that Brian needed an MRI right away, but that didn’t stop them from being seen by the triage nurse, an intern, a resident, an emergency attending physician, a neurology resident, a neurologist, a neurosurgery resident and finally a neurosurgeon before the MRI was even ordered. It would be hours before the machine would be free.

In the meantime, Brian’s and Aaron’s parents arrived and they took turns visiting with Brian as he waited and waited for his scan. It was already sunrise by the time Brian was finally taken for his MRI.

This was something completely new to Brian, and he was terrified of what the doctors might find. Sadly, his nipple rings had to be cut and removed before he could enter the scanner. The technician helped him transfer from his gurney to the MRI exam table. The technician explained the procedure to Brian, but he barely focused on what he was being told. He then found himself sliding into the maw of the machine. The tube he was inside of was so narrow, he felt he barely had room to breathe. It felt like he was inside a coffin! He underwent a series of scans, all lasting several minutes and accompanied by a deafening knocking and pounding sound. After more than a half hour of scanning, his vein was injected with something and the scanning continued. Finally, after fifty minutes, it was all over.

Brian was taken back to his cubicle in Emergency and he waited anxiously with Aaron and one or the other set of parents. Finally, another neurosurgeon appeared with a resident and medical student. He introduced himself as Dr. Michaels and started to speak slowly.

“Well, son, we’ve found the problem. You have post-traumatic syringomyelia, or rather, a syrinx for short. What this means is that the fluid that bathes the spinal cord has been accumulating inside your spinal cord, creating a small cavity that is expanding and gradually causing further damage. It’s probably been there for weeks or even maybe months, but has grown so slowly that you didn’t even notice the change until you started to lose feeling.”

“So what do we do?” Aaron asked.

“Well in spite of the way it may seem, this isn’t an emergency. It needs to be taken care of fairly soon, but the cavity is growing slowly and you have a little time. We’re talking about doing something in the next few weeks . . . not hours. Now before I explain what I’d like to do, I want to tell you that I’ve already contacted Dr. Stevens and he has suggested that you might want to get a second opinion. Syrinx surgery is controversial and while my specialty is spine surgery and I’ve done several of these procedures before, there are a handful of neurosurgeons in the U.S. who do nothing but this type of surgery.”

“What does the surgery involve?” Alan Sandler asked.

“The most conservative procedure and the one I’d like to do is to drain the syrinx and to place a small plastic catheter into the syrinx to allow it to drain, preventing further enlargement of the cavity. I have to tell you that this more than likely will not reverse the damage that has already been done.” Brian started sobbing as Dr. Michaels continued. “The reason we need to do this is to prevent any further damage. Now I know it seems like you’ve lost a lot already, but left untreated, the syrinx will continue to expand, eventually making you tetraplegic.”

“Tetraplegic?” Aaron questioned.

“I’m sorry, tetraplegia is the official international term for what most Americans call quadriplegia.”

“Oh,” Aaron said. “What is the success rate for this procedure?”

“It’s not as high as we’d like it to be. It’s successful the first time in less than half of the cases, and we can achieve satisfactory results with additional procedures in most patients, although these ‘shunting’ procedures often have to be repeated in time, regardless.”

“Is this the same procedure that the neurosurgeons Dr. Stevens recommended would be doing?”

“No. As I said, the treatment is controversial. What Dr. Stevens has in mind is much more extensive, but carries much more risk. That’s why he thinks that only neurosurgeons who’ve done hundreds of these procedures should do them. The difference between what I would do, and what they would do, is that they would try to alleviate the cause of the fluid collection in the first place. Now we really don’t know why this happens, but one of the prevailing theories is that scar tissue around the cord prevents it from sliding as you move, causing it to degenerate from the inside. The theory is that the fluid that accumulates is a symptom rather than the cause of the damage. The alternative treatment is called de-tethering, and it involves carefully removing the adhesions and freeing up the spinal cord so that it can slide freely, as it’s supposed to.”

“Will this de-tethering procedure bring back Brian’s lost function?” Aaron asked.

“Probably not, but there are some reports that a few of these patients have recovered function. The results aren’t spectacular, but they’re a lot better than anything I can offer Brian myself. The down side is that this is a very extensive procedure that takes nearly all day to perform. The surgical risks are much higher, and there is more opportunity for something to go wrong. Brian could lose even more function . . . or worse.”

June Sandler started crying hysterically, but Brian himself became eerily calm. He turned to Dr. Michaels and said, “I don’t want a half-assed, temporary fix. I know there’s more risk, but I’m willing to take it. I want to have the de-tethering procedure. Who did Dr. Steven’s say is the best person for doing this?”

Dr. Michaels gave them all the information and he obtained permission from Brian and his parents to Fed-Ex Brian’s medical record and scans to Colorado.

After Brian was discharged from Emergency and had returned to school, he could scarcely keep his mind on his studies, and he let all his extracurricular activities and responsibilities slide. The wait for word from Colorado was interminable. Finally, he received word that he was a good candidate for the procedure and that surgery was set for Tuesday, October 17. That meant even more waiting, and the level of anxiety in both the Sandler and Johnson households became increasingly palpable as the date approached.

Before leaving, Brian dropped out of the Jazz Ensemble and resigned his post as class president. Aaron and his friends had begged him not to, but Brian was adamant - he would be incapacitated by the surgery for weeks and his recovery and rehabilitation would be slow. The sophomore class needed a president and it wouldn’t be fair for the alternate to have to relinquish the post when Brian was finally able to return. After some tearful goodbyes, The Sandlers and Aaron headed to Colorado.

They arrived late on Sunday evening and settled into their hotel. On Monday, they spent a little time doing some sightseeing and the boys enjoyed visiting the Denver Mint. They joked about getting some ‘free samples’ to take home with them. Everyone went out for a nice dinner that evening, but no one really had an appetite and most of the food went untouched. They returned to the hotel early, and woke up early on Tuesday morning in anticipation of Brian’s surgery.

As instructed, they arrived by 6:00 AM - in fact, they were nearly an hour early. All of Brian’s lab results that were sent from home seemed to be in order and the surgery was a go.

At 6:15, Brian was wheeled back into the pre-surgical waiting area and his parents and Aaron were allowed to join him. Everyone was surprised by the lack of an accessible changing room and Brian was forced to go to the one accessible restroom in the area to change out of his clothes and into a hospital gown. He returned to the waiting area and gave his clothes to his parents for safekeeping.

At 6:30, he was moved to a pre-op room and an IV was placed in his left hand. A few minutes later, a nurse told him it was time and he was lifted up onto the gurney, which was too high for Brian to transfer himself to from his wheelchair. His parents and Aaron were escorted to the family waiting room.

For Brian it was déjà vu as he was wheeled on his back to the OR and transferred to the operating table. The anesthesia resident introduced himself to Brian and asked the usual questions about allergies and family history of adverse reactions to anesthesia, and then examined him. The Neurosurgeon came into the room and introduced himself for the first time to Brian, and told him he had nothing to worry about. ‘Easy for him to say’, Brian thought to himself. The anesthesia resident attached a very large syringe containing a milky-looking fluid to Brian’s IV, and wished Brian pleasant dreams as he started to push the plunger down on the syringe. Within seconds, Brian’s world went black.

Aaron paced back and forth in the waiting room as the morning wore on. It had been more than three hours since he’d last seen Brian and it was still early. He couldn’t stand it! He tried reading some of the old magazines in the waiting room, but couldn’t focus on what he read. He tried reading a favorite book he’d brought with him, but found himself reading the same paragraph over and over again. He played his PSP for a while, but kept losing miserably - he just couldn’t concentrate. He tried watching TV, but Jerry Springer was featuring yet another gay man leaving his wife and kids to start a new life with his part-time lover of the past eight years. It was just tasteless, Aaron thought to himself, exploiting the misery of others, and he knew firsthand how difficult this sort of thing could be. Brian’s dad was essentially thinking the same thing.

Finally, June Sandler got up and said, “Aaron, let’s go. There’s no point in being here and it’s going to be several more hours before we hear anything at all.”

“But what if something happens? What if something goes wrong? Brian needs me here.”

“Honey, nothing’s going to go wrong. You’re not doing Brian any good pacing back and forth, driving everyone else in the room crazy. We both have our cell phones. You know that Alan will call us immediately if there’s any news. Let’s go to the cafeteria and grab a light meal. You must be even more starved than I am. Then maybe we can come back here and check on things.”

Aaron didn’t want to leave, but his stomach was rumbling and even he had to admit he was absolutely starving, since he hadn’t had breakfast. They headed down to the cafeteria and Aaron ordered pancakes, eggs, bacon, sausage, orange juice and coffee. He didn’t ordinarily eat this kind of breakfast, but he was famished and, surgery or not, he was a very hungry teenager. Brian’s mom, on the other hand, just had a bagel and coffee.

As they ate, Mrs. Sandler started to speak, “You know, Aaron, Alan and I think the world of you. You’re like a son to us and we could never thank you enough for what you have done for Brian. What I’m saying, Aaron, is that we love you. You’re a fine, wonderful person.”

“I love you too, Mrs. Sandler. You’re like a mother to me and you and Mr. Sandler have done a fine job of raising a wonderful young man who’s the love of my life.”

“Please call me June, Aaron. I should hope you see me as more than Brian’s mother, and in just a year-and-a-half, you’ll officially be an adult. However, you’ve been acting as an adult for a while now. Your childhood ended on that terrible night in February, and I think you know exactly what I mean. You made a very childish mistake, but you rose above it and took responsibility for it. You’ve been a wonderful boyfriend to my son, and a good friend to Alan and me. Please call me June, adult to adult, and feel free to call my husband Alan.”

“Well, June, it’s gonna be hard to get used to that, but I see what you’re saying and it would be kinda silly for me to still be calling you Mrs. Sandler ten years from now. Me an adult? Well, I’m not as confident about that as you are, but I appreciate the compliment. You know how terrible I feel about the accident, but I can’t dwell on it. I still worry about Brian, though. Even before the syrinx, I was worried. I just don’t think he’s come to terms with the accident and with being paralyzed. God knows I’ve tried to get him to counseling. I know you have, too. He’s just so stubborn. Now he’s going through this again and he still hasn’t dealt with the first injury.”

“Aaron, I’m glad you told me this. I’ve been worried, too. I was going to bring it up with you, but I’ve worried a bit about whether or not you’ve fully dealt with the accident.”

Aaron thought for a moment and then said, “I do still have nightmares about it and probably will for some time. After the accident, when Brian was in rehab, I cried and screamed and threw things across the room and cursed. I think only Adam knows about it, and maybe my parents. I know there’ll still be residual guilt for some time to come, but I no longer blame myself for what happened . . . and I’ve accepted Brian as he is . . . physically and emotionally. No matter what the outcome of the surgery, I’ll still love Brian as much as I did the first time I set eyes upon him, and maybe more.

“But the recent change has shaken Brian to the core. He’s living very well with his disability, but I don’t think he fully accepts it in his mind. It’s kinda like he’s separated himself from his reality. I think he sees himself as living someone else’s life while he’s put his own on hold. Then on top of all that, this happened. I’m really worried about him.”

“Me, too, Aaron. After this is over and Brian’s back home, you and I have got to make a concerted effort to get Brian into counseling. He needs it desperately. For his sake, we all need it.”

They returned their trays and went back to the family waiting room, where Alan had dozed off. June gently shook his shoulder. “Woah - what? Oh . . .”

“No news, I suppose.” June stated more than asked.

“Not yet.”

“Why don’t you go get something to eat while Aaron and I hold down the fort?”

Alan looked around, still half asleep, and headed off without saying anything. Aaron and June continued to talk.

“Aaron, how’s the college search going?”

“Well, I dunno. I mean always wanted to go to an Ivy League school and kinda had my heart set on MIT, but I can’t leave Brian, and this just drives it home to me.”

“You’ve got to follow your dreams, Aaron. You’ll never be happy if you don’t. What’s worse is you’ll subconsciously always blame Brian for your not going to MIT and he’ll always feel guilty, wondering if he held you back. I’m not saying it wouldn’t be tough on the both of you to be apart, but you’ve still got a long way to go in getting your education. Don’t shortchange yourself. Besides if you do get into MIT, Boston’s one big college town. Brian’s bright and will probably get into whatever school he chooses, so chances are good that he could find something in Boston, too. And Boston’s a gay-friendly city.”

“It’s not all that wheelchair-friendly, though. Oh, the schools are all very accessible, but public transit is far from fully accessible and the cost of living is outrageous. Besides, look at what happened . . . Brian still needs you. He has a great house here with you and there are several highly-respected universities within commuting distance that either of us could attend.”

“Aaron, I don’t expect Brian to live with us forever. Eventually, he will need to leave the nest, and with you at his side, he’ll be fine wherever you end up. The bottom line is that I think you should do what’s best for you first, even if it means the two of you wind up at different schools in different parts of the country. I know it would be hard, but you can’t sell yourself short. At least apply, Aaron. If nothing else, it’ll be fun to turn down that acceptance letter from MIT. Promise me that much.”

Aaron laughed at that. “OK, June. I promise, and I don’t break my promises.”

Alan returned from the cafeteria and the three of them chatted for a while before Aaron decided that he felt like taking a walk. He walked for what seemed like hours. He exited the hospital and just took off in a random direction, shivering slightly in the cold autumn air. He walked and walked, but his mind was empty and he was numb. The boy he loved more than anything in the world was lying unconscious on an operating table while a man he didn’t even know was performing the most delicate microsurgery imaginable.

Then there was everything June had said. He knew that one day he would leave for college, but he’d put all thoughts of this on hold since he’d met Brian. Now he realized that a decision would soon be upon him. Should he follow his academic dreams and possibly lose the one person who meant more to him than anyone, or should he compromise slightly and stay with the one he loved? Could the two of them possibly find something that would fit both their dreams? Aaron was in such turmoil and he didn’t know what to do.

After quite some time, he realized he was hungry again and he stopped at a BK for a grilled chicken sandwich. It was OK - nothing great - but it was food and fit a need. After eating, he took out his cell phone and called the Sandlers to ask if there was any news. They told him there wasn’t any news, yet, and said they were worried about him, but he assured them he was all right. He hung up the phone and decided he probably should get back to the hospital to be sure he’d be there when Brian came out of surgery. When he got back, he couldn’t believe it was already after four o’clock. Only then did he realize that his legs were sore.

At a little after five, the neurosurgeon walked into the family waiting room and approached the Sandlers and Aaron. He told them that the surgery had gone well and that Brian would be in the recovery room for about an hour, and then taken to his own room after that. He felt that the surgery had been a success, but only time would tell. They thanked the neurosurgeon and went up to Brian’s room to wait for him.

Already in the room was a boy who looked to be about Brian’s age, along with what Aaron assumed to be his parents. The boy had half of his head shaved and there was a long surgical incision extending over a good portion of the side of his head.

Aaron walked up to the boy and introduced himself to him and his parents. He found out that the boy was recovering from surgery on an astrocytoma - a brain tumor with a fairly poor prognosis that’s common in kids and young adults. Aaron really felt bad for the boy, but his attention was quickly diverted when Brian was wheeled into the room on a gurney and transferred to his bed.

Aaron went over to see Brian, who was still very groggy, and he leaned down and gave Brian a quick kiss on the lips. Brian looked up at his boyfriend and broke out in the sweetest smile. “Please do that one more time,” he said. Aaron leaned down and this time Brian applied gentle suction and slipped his tongue into Aaron’s mouth. Aaron was somewhat aware that he heard the curtain separating the beds being drawn - obviously someone wasn’t comfortable with what they were seeing - but he didn’t really care. Everything that meant anything to him was in the bed in front of him. They continued kissing for a while until Brian’s parents stepped in.

“Sorry about that, June.”

“You called my mom June?”

“She asked me to, Brian. And somehow it just seems right.”

“Yeah, I guess,” Brian said.

Brian remained in the hospital in Colorado for just over a week. Aaron kept current with his studies as best he could through e-mail and IM chat sessions with classmates.

It quickly became apparent that Brian was actually worse following the surgery, but he had been warned to expect this. He would likely feel worse before he got better, but hearing that didn’t help when it became apparent that he now couldn’t feel his nipples at all. With this, he became despondent and sunk into a deep depression. He did his best to keep up an act for his parents and Aaron, but they weren’t buying it and he wouldn’t let them in. Everyone was worried about him, and the last thing Brian wanted, was for them to worry about him.

Finally, it was time for Brian to leave the hospital, but it was not yet safe for him to fly and so he stayed with his parents and Aaron in the hotel for another week. Halloween came and went and the boys both mused that they were missing the annual GSA Halloween ball - an event that they’d both been looking forward to. They were finally able to head home the first week in November.

Getting back to school was difficult for both boys, and Brian had an added burden of returning to a grueling outpatient physical therapy program while dealing with significant post-operative pain. Obvious to everyone but himself, Brian had sunk even deeper into depression. He still couldn’t feel his nipples and his leg spasms were much worse, requiring the use of escalating doses of medications. Aaron and his parents tried to reach him, but he effectively shut them out.

Although Aaron continued to drive Brian to and from school and therapies, Brian wouldn’t talk to Aaron and he shut him down every time he brought up the idea of counseling. Brian just kept telling him to ‘fuck off’ and mind his own business. Brian wouldn’t let Aaron spend the night with him and he wouldn’t even kiss him. When it came time for the one year anniversary of their meeting, Aaron gave Brian a card, but Brian just set it aside and didn’t even open it. He just left it in the car. Aaron was crushed, and he went home and silently cried himself to sleep.

The next day, it took Aaron all of his willpower to pick Brian up and drop him off at school. He knew that Brian needed him and he wanted to be there for him, but he knew he couldn’t quite forgive him for ignoring the most important day of their lives together. He decided that Brian had to know how he felt.

While they drove to school, Aaron took a deep breath and began, “Brian, I know that you have a lot on your mind right now, but please, hear me out. You don’t have to say anything and, frankly, I’d rather you wouldn’t. I think you know that you took things a bit too far yesterday. You crushed my heart, and maybe that’s what you wanted to do, but I want you to know that it hurt me more than anything anyone has ever done to me in my life. You know I love you more than anything. I’ve loved you for a year now and nothing you do or say can change that.

“Now you’ve been pretty shitty to me since we got back from Colorado. If there’s anything I have done to hurt you, just tell me what it is and I’ll do whatever it takes to make it up to you. If you’re angry with me for any reason, please give me the courtesy of telling me why.” Aaron gulped. “But if you just don’t love me any more, I need to hear that, too. I don’t think I could continue to see you then, but I’ll continue to drive you until you can make other arrangements. Just know that I’m here for you and I’ll do anything to regain your trust, and your love.”

After a long pause, Brian finally spoke, “Aaron, I know I haven’t exactly been fair to you, but I’m going through a lot as you said and I still haven’t gotten back to where I was before the surgery. I don’t know if I’ll ever get back what I had. Honestly, I don’t know if I love you any more. I know that must hurt like hell, but it’s the truth. Maybe I am wallowing in my own self-pity, but I have to get through this on my own.”

“You’re wrong Brian . . .”

“No, Aaron, you really don’t know me at all. I have to do this myself. I don’t expect you to wait for me and if you find someone else before I find my way, then it’ll be my loss . . . not yours. Please don’t hate me and I’ll find some other way to get to school and to my therapies. I feel badly for you, for all the guys in the Jazz Ensemble, and for the entire sophomore class. I’ve let you all down, but right now I just can’t deal with these things. I’m sorry, Aaron. I really am . . . and in my own way, I’ll miss you terribly.

“Goodbye, Aaron. Please don’t bother picking me up. And please don’t call . . . I don’t want to see or talk to you any more. Here,” Brian said as he removed the ID bracelet Aaron had given him on the day he returned from rehab. “Give this to someone more deserving of it . . . someone who’ll love you back.”

Aaron watched in silence as Brian set the bracelet down on his seat, then got his wheelchair out and wheeled himself into their school. Aaron rested his head on the steering wheel and sat there for a long time, just crying. He couldn’t bring himself to enter the school, and ended up driving himself home, throwing himself onto his bed and crying until he could cry no more.

Aaron knew his life would never be the same. His mother was right - first loves rarely last.

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