There is a corridor that runs from the vestibule of UCLA Resnick Neuropsychiatric Hospital’s “4 West” to what is now called “Unit C” but in Jani’s day it was called “Swing Unit.” To the right is the child and adolescent eating disorders unit and to the right is the adolescent unit. Windowless, it reminds me of an airport jetway. When you walk it, you don’t look to either side. Your eyes are focused on where you are going. You don’t blink. You just watch the doors to Unit C get closer and closer until you are there. A nurse pushes the door open and you are through. I swear the lighting dims but it is probably just a visual representation of the feeling of blackness. The world seems darker. You never look back at the door closing behind you, although you hear it. And your world feels smaller because it is. To enter Resnick, although a beautiful hospital that looks more like a hotel than a psych ward, is to go through a series of compressions: hospital to floor, floor to corridor, corridor to room, room to chair, chair to yourself.
Coming out is not the same. You rush out, like a diver trying to fight his way to the surface because you know the bends are coming. There is no point in stopping to decompress. You know it is going to hurt like hell. And the worst part is you know it won’t kill you. You have no hope of passing out, of blissful unconsciousness. It’s like a kidney stone. You’re gonna have to feel it.
I have walked that corridor probably hundreds of times now. I’ve walked it when Jani was being admitted, I’ve walked it to visit her, I’ve walked it to visit her friends, I’ve walked it when it time to bring her home.
Tonight, I walked it again, acutely aware of the little hand in mine. Because it was not Jani’s hand.
It was Bodhi’s.
Bodhi went to the place only Jani has been to now.
My little man is inpatient. My little man is without his family. I have no idea how he is doing. I pray he is asleep but I am too chickenshit to call and find out. I am terrified of his fear, of hearing him scream for Mommy, for me, for Jani.
I didn’t even say good-bye. Once I knew he had his one-to-one, once I saw the nurse with him, once it was time to go, I began to break. In all the times I left Jani there, I never cried. Later, when I got home, in the dark of her empty room, yes. But never on the unit. I suppose because I knew she would be okay there. She was safe.
But this time, as soon as I turned back to look at him, playing cars with the nurse, as soon as I saw Bodhi and not Jani, it was too much. I started to cry, that cry where you squeeze your eyes together trying to fight it back so you don’t make a sound. Our friend who went with me grabbed me and rushed me toward to exit. In a fleeting thought between the waves of pain I realized she was touching me, something she had never done before. I am not a hugger, except with my children. When somebody puts their arms around me, that is a sign that whatever façade I think I have left is gone. I banged on the glass of the nurses’ station to be let out. I was already crying, whimpering, but I had to get out before the Wail. Down the corridor. Eyes are blurry and sting. Snot already fills my nose so I can’t breathe through it. Halfway down, I think I make a show of wiping my eyes, but I think I start to bend over. Crying. Crying. Get me through the second security door into the vestibule. The nurse looking back to make sure the second door closed before the outer door can be opened. Out into the unit. Crying freely. Hand over my mouth. Can’t breathe. A large group of people, a family, clearly there for somebody in the ICU directly opposite the psych unit (whole families never come to the psych unit but when Grandma is dying every cousin and their fucking cousin comes). They are not crying but I am. Into the elevator. Can’t look at myself in the reflective glass of the inside of the elevator. Out. Down the central concourse.
And I sit down and ball.
It wasn’t supposed to be like this. It wasn’t supposed to be him. It was supposed to be Jani. Bodhi just had autism. Jani has schizophrenia. Yes, autistic kids have been on the unit before but they are the 12 year old non-verbal in diapers kind. Bodhi is my baby boy.
Of course, Jani was my baby girl once.
This wasn’t my intention. I took him to UCLA for a neurology consult, to get the EEG his psychiatrist wants. Maybe he is having seizures. I wanted him checked out physically because he doesn’t cooperate like most kids and he had been complaining about his mouth hurting and his tush hurting.
I should have known. I didn’t go in with Bodhi. I was providing my insurance information. I even handed over my debit card to pay the $50 copay my insurance requires for an ER visit when there is no admission. But the woman gave me my card back.
I should have known then. There is no copay if the patient is admitted from the ER.
I go back to triage and ask the nurse to take me to Bodhi. I follow her. I keep expecting her to turn off into one of the dozens of rooms.
I should have known then. I should have known when she pointed to the double doors at the back of the ER, telling me to turn left right before them. Only then did Bed #00 connect in my mind.
#00, #01, and #02 are the psych hold beds.
No, no, no. Bodhi needs a neurologist. His psychiatrist wants him to get a neuro work-up.
I should have known when talking to the neurologist, the attending psychiatrist puts his head in.
“Oh, I’m sorry,” his says to his neurologist counter-part.
“No, it’s fine. I’m about done.”
“It’s okay. I’ll wait.”
I should have known then. Psychiatrists never wait for anybody.
“I don’t see any epileptic activity,” the neuro says to me.
“I’d like him to get an MRI. What if there is a mass there? What if that is causing the behavior?” I ask.
“I mean, there certainly could be,” like I am child and he just accidentally told me Santa Claus doesn’t exist. “We’ll check that out. But he’s not showing the signs I would expect to see…”
“would expect to see…” Same thing UCLA said about Jani and autism four years ago. “Not what I would expect to see.”
I should have known.
“He’s got good muscle tone. No limpness anywhere. Eyes tracking.”
Should have known.
When the psychiatrist comes in, he is immediately interrupted by his cell ringing. Usually they just check the number and put the phone back in their pocket.
“Ah, excuse me,” he says, seeing the number. “I have to take this. It might be Dr. Howe calling back.”
Dr. “Howe.” Jani’s outpatient psychiatrist in January First. Bodhi’s as well. The one who diagnoses him with autism.
I should have known.
UCLA always talks the outpatient doctors. But Dr. Howe isn’t in the office on Friday. The UCLA doc talked to her for a long time. Twice.
I should have known.
He sees Bodhi, who is actually calm at that precise moment. He tells me he is going to talk to “the team.”
“The Team” are the faceless doctors you never meet who make the decision about whether to admit.
About an hour later, he comes back. “Okay, so I talked to my boss and I am going to have them bring you paperwork to admit him.”
It takes me a second to process that. “What?”
The psychiatrist looks up at me, surprised. “I’m sorry,” he says, “I just assumed we were all the same page here. You do want to admit him, right?”
He’s a psychiatrist. Not a neurologist. Bodhi isn’t going to neuro.
Now reality hits. I think my mouth is hanging open. I don’t know what to say. This has never happened to me before. Every time I have come here with Jani I’ve had to fight tooth and nail to get her admitted and yet without me even asking they want to admit BODHI?
“Does…does he need it?” I think I finally manage.
Now I can see that the psychiatrist realizes I wasn’t prepared for us. He looks to hi right as if there was somebody there who could help him.
“Ah, I’ve talked to the team and we all feel like it would be a good idea for him to be admitted.”
Only later could I process that it wasn’t even this easy to get Jani into UCLA. At the time, I was in shock. I brought him in, expecting them to take some blood, sedate him, and give him the EEG. Never did I ever expect that Bodhi would not be coming home tonight. I’d even said to every doctor I had seen “If this is behavioral, fine, we’ll deal with it. I just want to make sure it isn’t something physical.” I wasn’t even looking for meds.
Looking back now, I was delusional. I had gone to UCLA because I feared for Bodhi’s safety at home. You can see the video.
I was afraid he was going to hit his head in one of those states and crack his skull open. I was afraid he was going to run out the door (in a second video I uploaded but Youtube deleted, probably because Bodhi had just gotten out of the bath and was naked-I thought nothing of it but obviously somebody flagged it. Probably some kind citizen wanting to protect Bodhi’s privacy when he and Jani turn out to not really be mentally ill and write their own books about how Susan and I exploited them for fame and money-look for it on your Kindle in 2020 and 2025 when Jani and Bodhi are legal adults, respectively).
“Look, it is totally your decision,” the attending psychiatrist says to me. “If you don’t feel comfortable…”
No, I don’t feel comfortable.
Not even comfortably numb.
“…but I think it is a good idea.”
By the way, Bodhi’s tush hurts because he keeps sticking his finger up his rectum in a panicked state.
Not this again.
It is happening all over again.
Every other word out of my mouth was “autism.” Both the neurologist and the psychiatrist nodded. Both asked me to confirm that Bodhi actually had been officially diagnosed with ASD. But it was in a “You sure?” tone of voice, like when you tell a friend a story and they don’t believe you but are too polite to say anything.
That was all they asked. Neither brought up autism. After I walked that corridor with Bodhi, the intake nurse asked me what his triggers are.
“They aren’t consistent. Sometimes it is because we don’t have a pink Starburst. Another time it might be because we don’t have teal-colored candy.”
“I mean, like some kids are set off by crowds, loud noises…..” the nurse said. “Anything like that?”
Only now does it occur to me that Bodhi is the only autistic child I have ever met who loves Chuck-E-Cheese. I’ve never seen another young autistic child handle the bright lights and noise for more than 10 minutes.
And then I realized why the doctors didn’t ask about autism.
I should have known.
UCLA is one of the premier autism research facilities in the world.
“He has some ‘autistic-like’ behaviors,” the psychiatrist had told me.
But Dr. Howe has been sticking to autism for two years now.
There is a difference between “autistic-like behavior” and “autism.”
I wanted Bodhi to just have autism. That’s not so bad. I could live with that.
But he doesn’t.
The psychiatrist and the neurologist both asked many questions about mental illness in the family.
Yes, a cousin of a cousin spent his whole life in Napa State because he used to scream all the time.
But that is not Bodhi. Bodhi is not 1946. Bodhi is now.
Bodhi is not Jani. Bodhi can’t bathe himself (Jani can at least run a bath and sit in it), he can’t dress himself, he can’t really feed himself, he can’t go to the bathroom by himself.
“So he’s not potty-trained?”
“Well, he is. But you have to prompt him.”
“So like give him reminders?”
“No, you have to take him to the bathroom, pull down his pants, and position him.” Otherwise he just stands there.
Bodhi is smart, but has the verbal capacity of a three year old and about the same abilities. He needs help for everything.
When Jani first went to the hospital, she was so psychotic she didn’t care. By that time the psychosis had advanced quite severely. I held her as my baby girl but in my heart I knew my baby girl was having her mind eaten away.
I don’t see that with Bodhi. All I see is panic. Frantic rage which nothing can satisfy.
But just as I was deluded five years ago into thinking I alone could keep Jani ago, I fell into that same delusion again. I can take him home and keep him safe.
But that is the difference between a real delusional thought and the vernacular use of the word: Jani’s delusions never go away. She still believes in 24 Hours and Eighty.
My delusions get shattered by reality.
I am five years older. Bodhi is as fast as Jani and stronger. I am tired. I am getting complacent. I am making mistakes. And one of those mistakes could kill Bodhi.
In the end, I left him at UCLA because (and I keep trying to tell myself this) he is safer there than he is here.
So in the end, as I sat in the concourse, balling my eyes out, I was crying for many things. I was crying for Bodhi, that this happened to him. I was crying, hating Susan for being right, again, when I so desperately wanted her to be wrong. I was crying for myself, feeling a pain so great that for a split second I actually wished I had never had children. And I was doing what every parent who does through this does: remembering every shitty thing I ever did to Bodhi, minor though they are compared to Jani, and hating myself.
Because I am afraid. I cannot shake this fear that I will never hold him again. It’s not just that I am afraid I shattered his bond with me (although I am very much afraid of that, too. I was afraid of that with Jani, even though it turned out to not be true). It’s that I don’t know what his life will be like now. When I thought he had autism, I deluded myself into thinking I knew.
And now I know nothing.
Only one thought keeps ripping apart my soul.
Did I give him a good life?
Did I do enough?
And no matter how good of a parent I may have been or will be, the answer for me will always be “no,” as it would be for most of you parents.
No matter how much you value someone, no matter how much you love them, it will never seem like enough when you might be losing them.
Am I losing Bodhi?
“You got Jani back!” you say.
But they are not the same, are they?