Chapter 15
Brian chose to stay away from the office for several days following his private discussion with Amy. People always assumed that it was to stay by Justin's side as he went through another battery of tests and procedures. That was true. It was also true that Brian could not stand to be with people who were living normal lives. He had reached his limit. He felt jealousy and rage whenever he saw two people going through the paces of ordinary existence. He coveted their ease with life, the way they did not even think about what a precious gift they had. The naive fools, he wanted to shake them or take their place. He did not want to be in this dysfunctional relationship. That is not to say he did not want to be with Justin. He wanted Justin, he just wanted him whole again. It was partly selfish, and partly pity. How had all of this, how could one careless driver, make the two of them come to all of this?
Justin was scheduled for no less than six new tests, their primary objective was to measure his level of pain and the typical symptoms he was having. He spent a night with a sleep monitor on to tract his biorhythms as he slept. He had an intensive three hour session with the pain specialist, a Dr. Patricia Holt, without Brian. This one unsettled Brian, but Justin didn't seem to mind. Brian wanted to hear about what Justin was feeling, but the doctor insisted that the answers would be truer if he did not have to put up a good front for Brian. Dr. Holt promised to share all the results from all the tests at the group meeting the next day.
Justin had another setback the night before the group meeting. A third pain seizure hit. He described the pain as "all over, like he was hit with a truck" It was accompanied by a dull throbbing headache that would not respond to the typical drugs Justin had been taking. He finally agreed to a trigger point injection of a stronger medication that gave him relief. It also knocked him out. He slept for a solid six hours before waking at seven AM the following day.
He rolled over to see that the bed was empty and that Brian was no where around. He felt good, not great, but good, so he thought he would risk walking to the bathroom. Getting up was easy. Then he located the cane and made his way to the bathroom. He was able to get the water running in the shower and brush his teeth before he felt any major aches or pains. His knees felt stiff, as did his hands. The shower, with its hot water, seemed to help deaden the pain. He stayed under the spray for as long as he could safely remain upright. Then he sat down on the shower seat, and let the water pelt down on his head. Fibromyalgia syndrome? What the fuck was next? This one was pretty bad, he didn't want to see what would come after this, if the next thing could be worse. This was never ending. This was life altering. This was constant, unpredictable, totally medically dependent, life altering shit. The accident was bad enough. The idea of a permanent limp, with joints that ached at thirty years old, he had swallowed all of it. He would recover, he would create. He would go on. But this, this was worse. This was everything Will had described after his accident, but forever, and more intense. He didn't need this meeting today to tell him his life was way fucked. He couldn't possible feel any worse. At least the water stayed hot, it was comforting.
He never even looked up when the shower curtain rustled, he figured someone had come into the room and he did not really care who it was. But when he felt something in front of him drawing closer, he opened his eyes. There was Brian, kneeling down in front of him, holding up his hand to cup it under his chin. He did not say a word. He just looked at him. Looked at this man, in this frail state.
"I'm so fucked."
Brian smiled a little snarky smile, "Yea, but we're fucked together, and at least for you... well, you're used to being fucked. But me, I'm the one who does the fucking, and I don't like this one bit." It was an attempt to make Justin smile, even for a moment. It worked, Brian knew his 'I'm a top' jokes always made Justin smile. Brian leaned in a little closer, and Justin let his head fall on his shoulder. He cried. It was loud and angry. Nothing like any tears he had shed before, these were tears of fury. He screamed, so much so that Ken came running into the unit.
"Hey what's going on, are you two okay in there?"
"We're fine, leave us Ken, ignore us. We need some space right now." Was all Brian said. Ken left instantly.
"FUCK Brian, this is permanent now. This shit I thought I was handling so well, knowing all the time it would be temporary, even if it was long term it was temporary, is forever. I'm not going to get any better than I am right now. This is it, this is as good as I'll feel, and I feel like shit. Then, lucky me, there will be days, weeks, months of times when I feel wretched. This is every day, every hour, every minute maintenance. I don't want it. I'm so tired. I don't think I can do this anymore. I want it to end."
At the mention of ending Brian's head snapped up, "End how Justin? Do you want to end your pain, or end your life? Because I can sympathize with wanting to end your pain. I will be with you and work with you for the rest of our lives together to help end your pain. But I won't listen to you talk about ending your life. I don't care if you can only open one eye and feel your left nut on Thursday's, you would do more with that then anyone I know could. You will do what you always do, what we always do. We'll make the best of this. We'll hear what the specialists have to say, bitch about it, and then make the best of it. And I want to be perfectly clear with you - I will be with you for all of it. And I'll be with you because I want to be, because I love you, because I'm only half alive without you. So banish all crappy 'He's here out of obligations' thoughts from your head. Nothing that your twisted body can do will send me away. Not anymore. So let's get dressed, get some breakfast, and face this meeting head on. Then let's get home. Christ Justin, I miss home with you. I miss puttering around with you. We can do all of that again. Keep that in your damn, over thinking head. By Christmas we'll be puttering at our house, sleeping in our bed, bathing in our bathroom. We'll have the tools we need to deal with your pain, and we will be okay." Brian smiled a little smile at the last bit.
Justin couldn't help but smile, "You really know how to ride a soapbox don't you?"
"Ha, I learned from the best. You ready?"
"Yea, let's get going. I'm actually really hungry."
So they dried off and got dressed. Brian cooked eggs. Justin ate everything Brian put in front of him. He did not spill any milk or juice, and he did not drop his fork. It was a good breakfast. Brian thought to himself, 'This is how you look at the world now, in small bits, it was a good breakfast. The rest of today might suck, but it was a good breakfast.'
They went to the group meeting and faced all the new information head on. When Dr. Holt told them that Justin would have permanent issues with sleep, pain, fatigue, headaches, and irritable bowel they took it head on. She surprised Brian by revealing that Justin already suffered from many of the symptoms of FMS, and his symptoms were moderate to severe, he was just too bullheaded to tell anyone about it. He had suffered some of the symptoms in silence, others everyone at the table knew about. When they talked about secondary issues of depression, morning stiffness (Brian squeezed Justin's thigh on that one), dizziness, impaired coordination, jaw discomfort, muscle twitching, sensitivity to bright lights, loud noises, odors, and even chest pain they took them head on. When the doctors assembled suggested permanent therapy both physical and mental, they took it head on. And when all the doctors were done, and all the therapists had spoken, a new plan of attack was formed.
The plan involved daily therapy, weekly mental health checks, closer monitoring of sleep with medication to help, several different pain medications to try as well as fast acting injectable medication for the really bad days. Doctor Holt left them with all of this and the following homework: she wanted Justin to really evaluate what was important in his life. What things did he need to do more, and what could he do less? Those were important things to be aware of on days when his FMS was intense and all consuming as well as the days he was relatively free of any FMS symptom. He had to learn to prioritize, delegate, and conserve his energy.
Justin had a chance to express his concerns with the assembled group before the meeting ended. His goal was simple. He wanted to go home. He wanted to spend Christmas at home. He wanted to paint. He wanted to drink from his own cups. He wanted out. When could this happen? What other hurdles had to be jumped before he could leave? Brian's concerns were the same.
Will was the first to jump in with an answer for both men. "We understand that Amy will be Justin's therapist at home. It is because of this, and this alone, that we can make the following decision. Dr. Holt and I discussed Justin's release at length. It doesn't make sense to have you both stay here anymore. Justin has shown time and time again, that he is ready to get on with his life. A lot of the remaining issues we had have solidified under the FMS diagnosis, so many of the loose ends have been tied up. With Amy as his therapist, checking in with Rob weekly, and additional support staff at home to help ease the burden of running your home, Justin could go home on Thursday December 14th, three days from now."
Brian thought to himself, 'Everything can be pushed to the back of the bus. Justin is coming home.'