Love Justin (Part 2)

LaVieEnRose

Summary:

Dear Ben,

Thank you for the photos of flowers. Everyone’s always wondering what they should send when I’m in the hospital and these were perfect. Brian and I had a good laugh and he put them up around my room. Makes the place a lot more cheery.

I know Brian's keeping you guys updated, but just so you can hear it straight from me, I'm doing okay. The first few days I was here were awful, but it never got as bad as it was last year, when I had no immune system to speak of. The whole concept of pneumonia still scares the shit out of me ever since then, and obviously being intubated is no one's idea of a good time, but I don't think anyone was all that scared I was going to die this time. Except maybe Evan, but well. He's got death on his mind lately.

Brian stayed with me all through those first few days--Evan was here when he could be, but dialysis and the amount of sleep he needs eat up a lot of his time--but he's gone back to work now, so I'm alone a lot until he comes in the evening. It's a little lonely, but mostly it's just boring. There's an interpreter but she's not always around when the doctors come in and since we don't go to the same hospital as Daphne anymore, there's not really anyone around who signs when Evan and Brian aren't here. So mostly I just draw, and cough, and sleep. It's amazing how much I need to sleep. Brian says it's normal and that when I got sick last time I slept for over twenty hours a day while I was getting better. I don't really remember that time, which makes sense since I slept through most of it!

There's no way to tell yet if there's going to be any new lasting damage from this round, but my doctor's hopeful that there won't be since we caught it on time and intubated me early. Which I fought tooth and nail, because it's the worst feeling in the fucking world, having that thing down your throat, but I guess it was a good idea. Which means Brian was right. Damn it!

...I just totally fell asleep in the middle of writing this email. I should probably send it before that happens again.

Love,

Justin

**

Hey Ben and Mikey. 

Justin wanted to check in but he’s too tired to email, so here I am doing his bidding. Kid had a DAY. Nice surprise allergic reaction to a drug he’s had a hundred times before. The degree to which he cannot catch a break is legitimately hysterical, from a cosmic perspective. Not so funny when there’s a doctor calling you in the middle of a new client meeting to tell you they might have to stick the tube back down your little patient’s throat, but hey, we make do.

He’s all right now, just pukey and coated in hives and veeeeeery sleepy from the drugs. As if he wasn’t groggy enough already from having his lungs playing chicken with shutting down. He’s woken up a few times to mumble some bullshit about renewing some kind of car registration thing that I apparently need to take care of since he’s indisposed. The burdens I bear. Oh, and he’s slurred out something about emailing you, so here I am.

Don’t try calling tonight. He needs to rest.

Brian

**

Michael looked over my shoulder while I was reading. “How is he?”

I read the email twice, then a third time. Practically heard Brian’s voice, snarking, stretching its way around how worried he was.

“He’s really sick,” I said quietly.

**

Hey Ben,

Sorry for the silence!! Fuck my allergies. Especially when the doctors were making noise about maybe sending me home next week, and now they’re like oh, setback, complications, blah blah blah...this is gonna be longer than the hospital stay after I got burned. Which is just so ridiculous. I poured exactly ZERO boiling things on myself this time and they still won’t let me go.

Reaction’s mostly cleared up now. I’m still itchy and sneezing every ten seconds but I can breathe pretty well. They have me in lung therapy for the pneumonia, which is about as fun as it sounds. Lots of blowing in tubes.

It's still quiet and boring here. Brian took Martha away this morning and is keeping her at the house for a while, and I miss her and it's lonelier here without her. Plus now I can't just push the call button every time I'm going to have a seizure because now they can sneak up on me. Evan stayed over last night, though, and that was sweet. And Brian will be here tonight, and tomorrow Derek and Emily are coming over for a movie marathon. So don't worry. No one's forgotten me yet.

Oh my God, enough hospital stuff. Send me more Ivy pics? Have you seen Gus lately?? My mom came up to visit earlier this week and told me about bringing him to the Pirates game last weekend. How is your book coming? I keep re-reading the chapters you've sent me so far. I still absolutely love these characters, and it's such a good way to keep my mind off everything.

Gotta go, nurse is here. Lung therapy!

Love,

Justin

**

I read that email a few times and tried to get less pissed off, and when it didn't work I gave up and called Brian.

"Kinney."

"Hey. You took Martha away?"

Brian groaned. "He is such a fucking tattletale. Can we do this later? I just poured a whiskey and water and it would taste so much better without this conversation."

"I thought you were always happy to discuss Justin with people who were worried about him."

"I am," Brian said, without snark, because, to  his credit, he was. Brian's never acted like Justin's friends don't have just cause to worry about him, and although he might curate what information he shares--which I respect, it's Justin's privacy--he's never intentionally misleading. He has no patience for dramatics, obviously, but if you ask Brian calmly how Justin's doing, he'll tell you. "That doesn't extend to fielding accusations from people who don't know the full story."

And maybe you can see what I was walking into here, and God knows I should have, but...well. We'll get more into that later. "Do you understand what  it does to a disabled person to have their lifelines taken away?" I said instead. "Especially for Justin, with how he feels about hospitals, and how vulnerable he is there with no one who speaks his language--"

"Please, tell me more about sign language," Brian said. "I beg you."

"--and now he doesn't even know when he's going to have seizures."

"Shit, you're right. What was I thinking, taking his dog away for absolutely no reason? What a silly decision I've made."

The smugness in his voice had me realizing what a hole I'd just dug myself, but it wasn't as if I could backtrack now. "Okay, so are you going to tell me the reason?"

"I don't really see why I should," Brian said lightly.

"Is it some kind of hospital policy? Because I can help you figure out--"

"As if there's any hospital battle I need help with," he scoffed. "The hospital was happy to have her. I took her away because he's allergic to her."

I swallowed. "He is?"

"Yes, and normally he powers his way through it, but after an allergy attack like the one he had he's insanely reactive and everything drives him nuts, no pun intended. We tried to make it work, but she was giving him asthma attacks and hives around his mouth and sneezing fits where he couldn't fucking catch his breath. I took her away, he cried, now he's recovering."

I didn't know what to say.

"Now," Brian said. "Are you going to continue your lecture on disability rights, professor, or can I hang up and enjoy a drink before I go to the hospital and take care of my sick husband?"

"You can go."

"You're a peach. Buh-bye."=

I couldn't get over how embarrassed I felt about the whole thing, so I ended up relaying the saga to Michael when we were lying in bed that night. "I really don't know what I was thinking," I concluded. "Brian knows what Justin needs like the back of his hand. Of course if he did something like this it's for a good reason."

"Brian's definition of 'good reason' doesn't always line up with popular opinion, to be fair," Michael said.

I shook my head. "Justin just pushes this button for me," I said. "I think it's that he tries so hard to project this image that everything's okay. So when I see through that, I feel like I'm onto something. Like I have to act on it, as if Brian isn't ten steps ahead of me."

"It's easy to forget that, though. Brian doesn't exactly broadcast how hard he works for Justin."

"It's like I think because we're both sick that I'm automatically on some higher level with him," I said. "And that sounds nice and everything, and it was a useful concept when I was teaching him about disability positivity, but how true is it really? How much do I really know based on the virtue of us both having fucked-up immune systems?"

"It's more than that, you know it is," Michael said. "There's...part of this that healthy people can't access. You know it, I know it. Justin knows it and Brian knows it."

"But there has to be some point at which hard work trumps that," I said. "Brian's in there every day, learning every inch of what Justin needs. I'm all the way over here. So when does he know more than me?"

"He knows the practical stuff," Michael said. "But he doesn't know what it feels like."

"I don't know what being as sick as Justin feels like," I said, finally. "I act like we're on the same level, but I'm not as sick as him, and, knock on wood, I won't be for quite some time."

"That doesn't matter. You know what it feels like to...be in it. To be scared."

"Do you really think there's no point at which a healthy person can fully understand?"

"I don't know," Michael said. "But  I do know that's what Brian thinks."

**

Dear Justin,

Cut Brian some slack, my dear. He loves you so much.

Ben

**

Hi Ben.

I don't feel like myself today.

Brian's the one who put it into words. I had a seizure last night at around four in the morning. It wasn't a terrible one, but it wasn't great, either. I felt really weird after, mood-wise, which just happens sometimes, but it always kind of throws me. I ended up calling Brian, even though it was the middle of the night, and telling him I'd had a seizure and kind of getting worked up about it, and he was really patient and gentle with me even though it was four in the morning and I have, like, ninety seizures a day. He still treats each one like it's a big deal, and I absolutely love that about him, because every single seizure feels fucking shattering for a little while after it's over, when I'm still trying to get my brain to stop moving or whatever.

Brian stayed on the phone until I fell asleep, but when I woke up I still felt really grouchy and my short-term memory really sucked. I couldn't remember if the nurses had already been in and stuff like that. Brian came over in the morning to spend the day with me, since he doesn’t go to the office on Fridays anymore, and I was all sullen and pissy and I thought he’d get annoyed at me for that, but he just sat there quietly and found something on TV and we watched that for a while. Evan came in after dialysis and asked how I was, and that’s when Brian said, he doesn’t feel like himself today.

So I’m someone else today, I guess.

Love to Ivy and Michael.

J

**

Hi Ben,

Still in the hospital. 

I’m so worried about Evan.

He hasn't been to see me in two days now. Hasn't even called. I can't remember the last time I went that long without talking to him. He's just sleeping all the time, Brian says. Brian wakes him up for meds and food and dialysis and otherwise he's just sleeping.

It reminds me of how I feel right now, just too fucking spent to do anything, and I don't...I don't like the idea that Evan could be feeling how I'm feeling.

I'm also worried it's worse than that and Brian's downplaying it to me. Does he do that when I'm sick?

Brian's talking about having him admitted. He says it's just because it would be more convenient to have both of us in the same place so he wouldn't have to keep running back and forth, but...well, obviously that's bullshit. I can see how worried he is, and it's not about me anymore. I'm getting well.

So I'm scared.

**

Justin--

You both do it when you're sick. You're still in the hospital and you're acting like Brian doesn't have a reason to be worried about you. Downplaying. 

He does the same thing. I don't think it's intentional, from either of you. I think you still, after all this time, truly don't understand how much harder your life is than it's supposed to be. I know you're reading this and shaking your head, saying that I just don't understand, that it's really not that bad. And honey, if that's what keeps you going, that's fine. But it breaks my heart every time you say you're complaining too much, or try to change the subject off of yourself when I finally get you to dive into how you feel. There is so much more complaining you could do. 

With Brian I think it's a little different. He's very matter-of-fact when you're sick. He puts it all into context, makes it all make sense, and I think that’s because it’s how it looks to him. He doesn’t make it sound overwhelming, even when logically it should be, because he’s not overwhelmed.

You two make a pretty good pair.

Love,

Ben

**

Dear Ben,

Emily spent most of the day here with me. She hit on my nurse and took a nap curled up on my bed with me and we watched Project Runway DVDs. She made me laugh about a zillion times, which totally fucked up my breathing but was so worth it. Brian’s been kind of somber the past few days, just wanting to sort of prop up on the bed and breathe me in and relax, so it was nice to have some levity.

My friend April’s coming by tonight. Have I told you about her?

She’s hearing, which is kind of wild on its own before you even add in the fact that she doesn’t sign. She’s learning, and she’s working hard, but she has a life and a job (she’s a photographer, so cool, and has taken these gorgeous pictures of me and Brian and Evan) and, as you know, ASL is hard. So we mostly talk by writing things back and forth or using apps. I don’t know which is more amazing: that she’s patient enough to deal with me, or I’m patient enough to deal with her. And it doesn’t even feel like a chore to me, and she keeps coming back and learning new signs and everything so I don’t think she’s miserable having me in her life either.

It’s because we’re family. The same way I can interrupt Deaf people I’ve never met and immediately be invited into the conversation, I can see a girl having a seizure in a subway station and all of a sudden language doesn’t matter.   She wasn’t diagnosed epileptic before that, and since then she’s had a handful more seizures so she’s official now. And all of hers are tonic clonic, too. Shitty luck. At least she doesn’t have them very often.

I didn’t realize until I met her that I didn’t know a single other epileptic, and now I don’t understand how I got by. Molly’s had one seizure, but that was a fluke and she doesn’t remember any of it, so she can’t really relate. April GETS it. She doesn’t have any complications like I do, thank God, but she knows exactly what it feels like to wake up hurt and sick and confused. 

Knowing disabled and sick people with any condition is obviously a blessing and so important. But the specificity of this...I’m sure I don’t have to explain it to you. You know enough people with HIV to know it’s different from talking to, say, me. Not that this isn’t meaningful! Oh, you know what I mean. I’m going to stop talking myself into a corner now.

Justin

**

My feelings weren’t hurt, of course. I’d often recognized how lucky I was to have a disease that, in my circles at least, was understood and discussed and taken seriously. Justin over and over again had to go through the process of explaining his conditions to people who’d never heard of them, or at least didn’t know anything substantive. First the disease that made him lose his hearing, then post-traumatic epilepsy when he couldn’t hide the seizures anymore, then his immune system and the lung scarring. And that’s not even to mention having to hold everyone’s hand about his PTSD from the bashing.

It occurs to me every so often just how much Justin has had to do alone. Specifically, without Brian.

And yet, Brian has always been there. Brian has never let Justin be taken away by trauma, pain, illness.

Meanwhile just the gap between positive and negative between me and Michael can sometimes feel insurmountable.

I’m not saying that what Michael and I have isn’t stable, and beautiful, and deep, and important.

I’m just saying...God. There’s a reason the two of them turn heads. They’re a mythological happening. They’re an event. People stop and watch when a parade goes by, after all. They’re a celebration. 

**

Ben,

I’m HOOOOOOME!

I mean, I have to go back to the hospital for outpatient lung therapy every day for a while, yeah yeah yeah, but home!! 

It's always weird coming back after a long hospital stay. The house feels enormous. And I get to see Martha again!! And sleep beside Evan and Brian and know that they're okay!

And they are okay, for the most part. Brian is exhausted, and he's being really careful with me, handling me all gently and dressing me in his clothes. He's a lot more willing to take time off from work than he used to be, which makes me incredibly happy. I used to freak myself out thinking about having a heart attack or something from working too hard. Now Emily says he hasn't been in the office in a week. Good. 

Evan...I don't know. It's hard. I don't want to get too far into specifics because he's more private than I am, but...he seems really resigned now. And what scares me is Brian kind of does too. It's just quiet here. Nobody's panicking, it's just like...I kind of feel like Brian and Evan are sleepwalking, except for the bursts of energy from Brian where he takes out his worry on an unsuspecting client or the treadmill or the box of condoms in the nightstand, not to be too graphic. Evan doesn't have bursts of energy like that. Evan sleeps.

Speaking of, I'm falling asleep, so I'll sign off for now. Love from us.

Think good thoughts for Evan, please.

Justin

**

Hey Ben,

Thank you for the care package!! Very excited about the hot chocolate. I think I squealed or something because Brian laughed at me.

I've been thinking a lot lately about Pittsburgh and about family and about what we found there and what we've found here and just...the sheer unlikelihood of something like that happening twice. In two different states, in two different languages...two different lifetimes, really. The people I've managed to attract are so fucking beautiful, and I don't know what I did to deserve that. 

I guess I'm thinking about this stuff because April texted me earlier saying she wants to talk to me about something important, and I felt this immediate concern, and I realized....God, I really just can't stop picking up people. Every time I think there's no way there's another person out there who wants to deal with me, one comes along, and they want to talk to me about things. Even when they don't speak my language.

I hope everything's okay with her. She's on her way here now, so I should go.

Evan's hanging in there.

Love,

Justin