Peter Aguero - Me & Her & It

 

I emerged from the subway into Penn Station, and there are a million people all over the place. I'm looking for my mother. She's easy to spot because she's standing at the foot of the escalator by the Seventh Avenue side wearing all pink, and she's oblivious of the fact that she's in everybody's way. And I get up to her, I give her a big hug and a kiss, and the first thing she says is, "Peter, I can't believe how many cookies they have here in New York." She's dumbfounded. She's a big lady. We're big people. [audience laughter] And I take her down back to the subway, and we get on the two-train to head uptown. And it's packed in there, too. It's right around five o’clock in the afternoon and you're just packed in with people. So, if you're going to scratch your nose, you have to bring your hand up your body and scratch your nose and then bring it down. 

 

And she's sitting in the one seat I could procure for her. And I'm standing in front like a sentry, holding on to make sure the great unwashed don't bother my mother. And she's white-knuckling the handle because she's terrified. She hates the subway and the entire idea of being underground, because she read once that if you're in New York and you're on the subway and it breaks down, they make you crawl out amongst the rats. [audience laughter] And so, we're riding uptown, and she just says, "You look exhausted." And I said, "I'm so tired. You have no idea." And she says, "It's okay. You're going to be fine. Sara's going to be fine. She's with her parents. She's in the hospital. It's the safest place for her to be." 

 

We're going up to Columbia Presbyterian Hospital on the Upper West Side because my wife has been in there for five days. My wife has epilepsy, and it's difficult. We at this point are in a what the doctors call a cluster of seizures, where she's having them once every two weeks. And she had gone from-- In the beginning of our relationship 15 years ago, she was having myoclonic seizures, where she would just jerk and spill her coffee, and it was funny. And now she has grand-mal seizures, which is French for "big bad." And that's not funny at all. 

 

We live in New York City for a bunch of reasons, the least of which isn't that there she can be mobile. When we were living in New Jersey, she couldn't drive, so she couldn't get anywhere. In New York, she could take a subway or a bus or a cab, and she can live her life. And also, because if she's walking down the street, which has happened, and she'll have a seizure in public, there will be a nurse walking by or two cops or like a Vietnam medic, and like, they're all just there and she's safe. Or there'll be, ten hipsters from Brooklyn trying to be the person that saved this girl on the street so they can tweet about it later. [audience laughter] Instagram. [audience laughter] And you know, there's no seizure filter on that phone, though. [audience laughter] 

 

The reason why she's in the hospital is because we've had enough. The latest seizure that she'd had taken place in the shower. And I was home with her in the other room, and I heard a big crash. And I said, "Baby, you all right?" And I didn't hear anything. So, I ran into the bathroom, and she was face down in four inches of water having a seizure. And her back was cut open because she fell and hit the faucet so hard that she bent the steel pipe. And she was just in a rictus, and she went down like a ton of bricks. And I picked her up out of the tub, which was hard because she was wet and naked and shaking. And I pulled her into the bedroom and I laid her down on the floor and I held her on her side, which is what you're supposed to do when someone has a seizure. You don't put your wallet in their mouth. Everything gets like tight. All the muscles are tight, and she's like marble. And her eyes are rolled back into her head and her jaw clenches so hard you can hear the teeth grinding. And I hold her on her side like I saw my mother do with my baby sister when she was growing up when she had seizures. And I do what my mother did, and I hold Sara and I say, "You're a good girl. Everything's okay. You're safe. I'm here. You're a good girl. You're safe. Everything's okay." 

 

And then after the seizure stops, it lasts for about two minutes. Now, it's the worst part. It's called the postictal state. And for about 30 minutes, she's like a computer rebooting. She starts to come back online, and the color comes back in her eyes and her lips are blue because she's unconscious. But for those minutes in between when the seizure's done until she starts to come back, she is a dead bag of meat. And every single time, I'm convinced that this is it and I'm never going to see her again. That wherever she goes when she has the seizure, she's never going to come back, every time, I know it. So, in that moment, I'm already thinking, who do I have to call first? Her father? My mother? She comes back and then I give her some Ativan because she's terrified. The only thing she knows when she comes back into consciousness is that she's scared and that's it. It's like the fear section of her brain wakes up before anything else. And she doesn't know who I am. She doesn't know who she is. She doesn't know what epilepsy is. She's just fear incarnate. And it's awful because I worry that again, when she's rebooting, she'll stay right there and she'll be like that forever. 

 

So, what the doctor has decided to do is we made a plan is we're going to finally catch a seizure. So she goes into the hospital, and over the course of five days, while she's hooked up to 80 different monitors and an EEG to her head and blood pressure and things on her heart, cameras everywhere, every monitor in the world in this room, they're going to wean her off her medication and then induce a seizure. Sometimes sleep will cause a seizure in my wife or lack of sleep, so keep her up late. Alcohol will do it, so they give her hospital label wine. [audience laughter] And then they start flashing strobe lights in her face, playing like Japanese cartoons, [audience laughter] making her hyperventilate, trying to cause this thing that we've been spending 15 years trying to avoid. And for the first time, we're trying to cause it to happen. 

 

So, my mother and I are going up to visit her and we get to 168th Street, which is quite possibly the most dystopian of New York subway stations. It looks like the Morlocks built it. [audience laughter] And it's a low arched ceiling and everything's filthy and there's a rickety stairway across the tracks. And then we're so far underground that there's no escalator or stairs. You get into this dirty, dull, diamond plate steel elevator with like a misshapen person behind plywood pushing the button. And my mother gets in there and she's holding onto my arm so tight because she knows that any second green gas is going to start coming up from the bottom and the rat king will have his feast tonight. 

 

We make our way upstairs to street level and we make a left and go one block west to Columbia Presbyterian. We sign at the bottom and get passes to go to the Neurology unit. And we get upstairs and I walk in the room and she's beautiful. She's so beautiful. I bought her new pajamas before she went into the hospital. They're like this light green with little flowers and daisies on them. And she's doing crossword puzzles and laughing. And you almost would forget the 87 sensors on her head wrapped in gauze so she looks like a sock monkey. And her mother and her father are sitting there and, man, I wanted so bad for the seizure to happen while they were there because in the 15 years that she's had epilepsy, they have never seen one. And they have no idea what it looks like and they have no idea what we're dealing with. It's an abstract idea to them. And they have no idea the fact that epilepsy is chaos incarnate. There's nothing to do to predict it. But she doesn't have it then, and her mom sees that we're there and she says, "Okay, I'll see you guys later." And she goes downstairs and gets in her car and drives back to Connecticut. And I walk with her dad to the elevator. He's heading back to Staten Island, which might as well be a million miles away from what is actually New York City.

 

And I stop at the elevator with him, and I decide I'm going to kind of pour my heart out. He's a nice guy. I've known him for a long time. I said, "Carl, man, I don't know what to do. I'm going crazy here. She keeps having these seizures, and I got to work, I got to go, I got to be out, and I'm traveling, and I can't be at home, and she can't be by herself. And they keep happening. I need help. I can't keep doing this alone. I need something. I need help. We need to have a plan to keep her safe. We need to keep her safe. I can't live without her. I don't know what to do, man. I just don't know what to do." And Carl pauses, and he looks at me and he says, "Well, Pete, she's your wife." I shake his hand. He gets in the elevator, and I go back to the room. 

 

She's my wife. My mom goes downstairs to get a cup of coffee at the cafeteria. And I'm sitting there talking to Sara and helping her with a crossword puzzle. And then she lifts herself up on the bed and turns to the left, and then it's on. And the seizure is happening right then. And she's on the bed shaking incredibly violently because there's no medication in her system. And alarms start going off, and the nurses run in and the doctors. And all I want to do-- I'm standing there on the bed, and every instinct is telling me to hold on to her and just hold her so tight because I might never get a chance to do it ever again. But I'm watching her shake and convulse on the bed, knowing that the cameras need to catch it and the monitors need to catch it. We need this. And I'm so conflicted, and I can’t-- I'm just terrified until the doctor says, "Okay, that's enough." And she gets a dose of Ativan and puts it in the IV. And Sara calms down and she goes unconscious completely. And I go in with the doctor to the nurse's station, and we wind back the tape and we got it. We got it. She says, "We got it." 

 

I go outside and I go down the corner and I just start smoking cigarettes, because why not? And I feel so weird because this is what we wanted and we got it. So, it was a victory. I guess it was a victory. I go back upstairs, and my mom's back in the room now. And the lights are off and Sara's sleeping. And I just crawl on top of her in the bed, and I just hug her with everything I've got, my whole body and my soul and everything. And I'm just holding onto her. And I knock some stuff off. And the alarm's still going off. And the nurse came in, and she goes, "Oh, thank God. I looked on the monitor. We thought a bear got in the hospital."[audience laughter] And I'm like, "No, it's okay." And Sara kind of wakes up and she says, "Baby, did we get it?" I said, "Baby, we got it. You did a good job." And she goes back to sleep, and I kiss her. And then me and my mom leave. I tell her, I whisper in her ear, "I'll see you tomorrow. We'll take you home tomorrow." I'm in the subway with my mother on the way back downtown. And now it's late at night, so it's kind of empty. And the thing about New York is you don't have a car, you leave for the day, and you're in public for the rest of the day until you go home, so, you don't have any private space. So, you have these very private moments in public. And that's just the way it is. 

 

And I'm on the subway sitting next to my mother, and I'm bawling and crying, and she's got her arms around me, and she's telling me I'm a good boy and that I'm a good husband, and I'm just doing this in public, and that's okay. And then she says, "Pete, I know how you feel. I know how you feel. When Michelle had epilepsy when she was little, I know what you're going through." And I stopped and I said, [shouting] "You don't know what I'm going through because you had Dad. You had the two of you, plus your aunts. Everybody was there. You had me in the house. There was no-- this is just me. When Michelle was a little kid, you had everybody watching. I have to watch her all the time. And I'm the only one who sees this [beep]. Don't [beep] tell me you know what I'm talking about, because you don't." And she says, "You're right. I'm sorry. I don't know what you're going through. I'm sorry. But you're a good husband and she's lucky to have you." 

 

We get back down to Penn Station and I walk my mother to her train to go back down to South Jersey. And I give her a big hug and I apologize for yelling at her. And she forgave me because that's what mothers do. So, I walk back up to my train. It's up in Times Square, the seven train to go back to Queens to our apartment. And I know I'm going to be there by myself that night. And I'm walking up Seventh Avenue and there's just hundreds and thousands of people out there just always is at ten o’clock at night. Strollers, at ten o’clock and it’s ridiculous [audience laughter] and I'm walking up Seventh Avenue in the midst of this crowd of people. And I stop and I sit on the base of this statue of a guy using a sewing machine to have a cigarette before I go back down into the subway. And I realize I'm in the middle of this crowd of humanity and that I am alone. That I'm just alone. And that tomorrow, when I bring Sara home, I'll be alone. But there's a third member of our marriage, and that's epilepsy. And it hides like a coward until it comes out, until it decides to come out. And I put out my cigarette. And I go down on the subway and I sit down. And you know, I'm not ever going to be alone because moving forward, no matter where we are, it's going to be me and her and it. And that's just the way it is. Thank you.