I had an interesting dream last night. I don’t often dream anymore, in more ways than one. Human sleep patterns are interesting. There are five stages of human sleep: one, two, three, four, and REM sleep. One and two are light sleep stages. Three and four are deeper, with four being the deepest. At stage four, the heart rate slows dramatically. The alpha brain wave, the wave most active when we are awake, essentially flatlines. Most likely, the alpha wave is our conscious mind and at stage four, we enter true unconsciousness in preparation for REM. However, REM sleep is not restful at all. Heart and respiration increase during REM, accompanied by significant spikes in delta waves. We dream during REM sleep. This is why you feel exhausted when you wake up from an intense dream. You have gone straight from REM back to stage one, bypassing the stages at which the body relaxes again.
When I wake up from an intense dream, there is a brief period of time where I am not sure if the dream actually occurred as reality. Yes, I know I am in my bed in whichever apartment I happen to be in, but that doesn’t mean that what I dreamed about didn’t really happen. It takes a few moments for my logical brain to kick in, remember where I was when I lost consciousness (in bed) and conclude that therefore the intense experience I remember must not have happened. All of us have this moment of fact-checking when we first wake up from an intense dream.
I imagine that for Jani, this is her entire life experience. Perhaps for her REM continues at the same time as waking sleep (although her 30 second EEG when she was five didn’t show anything unusual, but would they know what to look for?) so Jani is never quite sure if what she remembers actually happened or not. She is always “fact-checking.” Unfortunately, those of us without psychosis can latch upon the last “hard memory” we have, which is usually going to bed. This gives us a baseline of reality with which to compare to experiences that occurred in the gap between going to sleep and waking up. If the last thing I am sure really happened was I lay down in bed and tried to sleep, then it is unlikely that I was actually in Minneapolis airport, trying to find the correct gate for my flight home to Los Angeles (I cannot read in my dreams). I remember being in my bed. Then I remember desperately trying to find my flight home, an experience which felt extremely real. Then I wake up in my bed. Not enough time has passed and I don’t actually remember going to Minneapolis. I just remember being in the airport. So clearly I wasn’t really there.
For Jani, there are no fixed points in reality. Jani constantly asks me questions that I have already answered, such as “Is Honey okay?” Yes, Honey is fine. We just took her out three hours ago. But does Jani remember that happening? Jani will ask me if Honey is fine even though she just saw Honey in the other room three minutes ago. Has she forgotten? Us neurotypicals take a sense of linear time for granted, but Jani’s conception of her environment may not be linear. As the hallucinations intrude, they squeeze out the present “real” moment, leaving Jani with unaccounted for gaps in her memory of the day. Jani’s existence may be like a dream for the rest of us. In dreams, we shuttle from place to place instantaneously. One moment we are one place, then we are in another, and since our logical mind is asleep, we don’t question the instability of time and place. The common component of a dream is you just go with it when it happens. Driven entirely by emotion, you react to your dream without questioning the apparent lack of logic in what is happening.
Jani is constantly re-emerging from Calalini and having to figure out where she is and what just happened. Hence, the questions as to whether Honey is okay.
If you are extremely physically exhausted, your forays into REM sleep will be shorter. You will spend more time in Stage 4 sleep in order to allow your body to regenerate (which it cannot do during REM). Maybe that is why I so rarely remember my dreams.
But last night I took Bodhi to bed around 5pm and didn’t wake up again until 5am. I think I slept long enough to allow for REM sleep toward the end of the cycle.
And I dreamed.
It’s been more than eighteen hours since I had the dream, so much of it has faded. However, what I remember was it featured the woman I very nearly had an affair with over two years ago now. Let’s call her Sarah (not her real name, obviously).
Let me provide some context.
The real Sarah was a co-worker of mine, a fellow instructor at CSUN. At the time, in late Spring of 2008, Susan and I were emerging from the trauma of Jani’s first two hospitalizations. First the first five years of her life, Jani had never spent a night away from either Susan or myself. Then, suddenly, she was in the hospital because she was so violent and nobody really seemed to know why. When we had first been referred to a psychiatrist, I had been sure that the psychiatrist would be able to pinpoint what was wrong with Jani and direct us how to fix it. And I didn’t go looking for a drug necessarily. I was just looking for an answer, the directions to restore my daughter to who she had been before she became violent. If that answer was me, if it was my fault, I was fine with that. Just tell me what I can do to fix it.
But there were no answers. No obvious continual psychological trauma. No physical abnormalities. Nobody broke out the DSM-IV and said “This is what she has.” Maybe bipolar. Maybe ADHD. Maybe some combination of the two. The doctors and therapists really weren’t sure. And believe me, I confessed everything I had done or might have done to cause this. No, no, they said, I don’t think that would cause this.
I was used to diagnosis, then treatment. In psychiatry, it’s backwards. You try to treat the symptoms and whatever works then determines the diagnosis (although in Jani’s case she was eventually diagnosed with child-onset schizophrenia because UCLA ran out of any other potential diagnoses).
I wanted to know why Jani was violent. I believed it was because she was so unhappy that life didn’t meet her needs. She was brilliant and the world just wasn’t smart enough for her. I believed then that if MIT had come knocking for Jani, she would be fine. She was “Good Will Hunting,” her violence a product of unmeet emotional and intellectual fulfillment. But I couldn’t find anyway to meet what I thought then were her needs. I tried, but even Will Hunting, despite his genius, couldn’t function at MIT. Jani might have been brilliant, but the world belonged to the morons. They set the rules. I feared Jani’s violence toward Bodhi, believing it was because Bodhi had come out into the world her ready to be her intellectual and emotional companion. The violence against me was nothing. I quickly developed a high pain threshold. What bothered me the most was I felt Jani’s violence was coming from her unhappiness, and I couldn’t fix that happiness. The decision to use medications was about trying to help her deal with a world that wasn’t made for her.
I wanted the meds to allow Jani to find some joy again in our world, in the things she had once loved. I wanted her to be able to live within the limits set by the morons and not turn into Vincent van Gogh.
But they didn’t work and Jani ended up in the hospital. And even there there were no easy answers. It was just keep trying medications, playing with the doses, until they found something that worked. When they couldn’t, the second hospital, Loma Linda, simply encouraged us to get “tougher” with Jani. Not that they took her off her medications, at that time Seroquel and Depakote.
Jani returned from two sets up hospitalizations totaling a month in April of 2008, and for awhile it seemed like things were stabilizing. The violent rages dropped from 10-12 per day to 2-3 per day. And I had to become the authoritarian parent, something I had never wanted to be. I was tough on Jani, really tough. When she got violent, I would drag her into her room and lock her in, staying outside, listening to her rage and throw anything in her room not bolted down, telling her she could come out as soon as she calmed down. In an attempt to connect her actions to consequences, she had to tell us why she’d been placed in time-out before she could come out. “Jani, why are you in time-out?”
“Because I screamed.”
“Well, yes, but that wasn’t why you had to go in.”
“No, that wasn’t it.” I thought at the time that she didn’t want to take responsibility. I thought she knew and she just was avoiding it.
“Who’d you hit?”
“No, you didn’t hit, Bodhi. Come on, Jani. What did you do?”
It took me months to realize that I had to fill in the blanks for her about what she had done, coaching her like we were doing homework. It took me months more to realize she was running down a list of everything she might have done until she got the right answer. It took me months to realize she wasn’t avoiding the answer because she didn’t want to take responsibility. It took me months to realize that she really didn’t know the answer.
It is called “disassociation” and it commonly occurs during psychotic episodes. But I didn’t know that then.
But things seemed to be getting better. I believed Jani was “learning” that her actions had consequences, that she couldn’t just do anything.
But once I was the authoritarian, I couldn’t be her friend, the one who understood her world. So I was just a father now.
Susan and I were so spent from the crisis we had just been through that we had nothing to give to each other. It was all about keeping the kids going.
Of course, it always had been, but I guess I believed it would get better. Now, in May of 2008, with the immediate crisis over, all the emotions I had repressed the previous six months came bubbling up and I found myself asking “Is this it? Is this all I have to look forward to, just being the authoritarian parent and trying to keep the household running and teaching?”
It is called a “mid-life crisis” but it can happen at any time. It is when you ask yourself, “Is this all there is?” and you can’t see your life getting any better, any different. It will just go on and on and on like this perpetuity.
So you start looking for something to look forward to.
For men, for me, this became the arms of another woman. Most women aren’t aggressive when they find out you are married. This one had no qualms. If I was unhappy in my marriage, I should get out. Life was too short.
This woman made me feel like a teenage boy again. I wanted to spend every second with her. I missed her terribly when she was away. She was the only thing in life I looked forward to.
She liked me because I intelligent, fun (or so she thought), and I was younger than her, which probably helped to validate her.
But just like I’d done with girls in high school, I was telling her what I thought she wanted to hear. I became more terrified of losing her than losing my wife, and so I suppressed what was really going on inside me, which wasn’t pretty. I had just gone to a place I had never imagined I would ever go. Something had gone terribly wrong with my daughter but it seemed to be partially “fixed” by me being the authoritarian father figure. I had been Jani’s friend, but that wasn’t enough. I felt inadequate and I felt I had become everything I didn’t want to be.
“Sarah” and I worked together one morning. I really needed to see her. I needed to feel her touch. What I really needed was to be held. I didn’t want to be an adult. I wanted to be a kid, to be held, to be told that everything would be alright. I never told her this but in truth I was jealous as hell of her teenage son. I wanted a mother, not a lover. I wanted her to stay with me; I needed her to stay with me, but she wouldn’t. She had plans. She told me to “relax” and left with a friend. I went back to my car and broke down crying in the staff parking lot at CSUN. I sobbed for more than thirty minutes. I needed to go home. Susan had both kids. I needed to go home, but I didn’t want to go home because it would be just more of the same. More hell. Sarah was my only escape. So I got out a piece of paper from my briefcase and wrote her a letter. It was not very coherent. I was barely functional. In this letter, I revealed to her what I really was, a huge, gaping, black hole trying to suck her into my internal hell. I left it underneath the windshield wiper of her car.
For the next several days, she didn’t talk to me. The flirting emails stopped. Eventually, she admitted that my note had scared her.
I am glad it did because it drove her away and prevented me from committing infidelity.
For any of my readers with mentally ill or autistic children who are in this place right now, who have someone in your life that you think is going to save you from the despair you feel, do me a favor. Do what I did. Show them who you really are. Reveal the pain and despair that lives inside of you everyday. Because they need to know. They need to know that you are not like them. You may look like them. You may even occasionally act like them. But the truth is you have been scarred forever by your experience and all the passion in the world won’t close that wound. It opened when you found out your child was sick and it will never close.
Once you have been where we parents of mentally ill/autistic children have been, you are forever isolated from most of the rest of humanity. They have never felt what you feel everyday, and you will never again feel what they feel.
In my dream last night, Sarah returned to my life. Perhaps she had forgiven me for being such a freak. I don’t know. Maybe she really felt something for me after all. At any length, she was back, and once again, I was choosing her, except that this time I wasn’t going to tell Susan. I was going to have a secret affair.
In the dream, Sarah asks me for a time when we can get together. And I wanted to get together. I wanted it so bad. But that was were reality entered the dream.
Every day that she suggested, I couldn’t do. “How about Thursday?” she said in the dream, “I am free Thursday.”
“No, I can’t do Thursday. I have to be with Jani that day.”
And it went on like that. She wanted a full day where we could be together, but I couldn’t do it. Even in my dream, I knew there was no one to take Jani. There was no place Jani could go, no person she could spend the day with, where she would be happy and content long enough for me to go fuck another woman.
I realized I couldn’t do it. As much as I wanted Sarah, I couldn’t abandon Jani. I had no time for an affair. I reluctantly told Sarah I just couldn’t do it.
Then I woke up. Bodhi was lying next to me. It was 4:45 in the morning.
Well, shit, I thought to myself, even in my dreams I can’t escape. Even in my dreams, when my logical mind is not functioning, I will not abandon Jani.
Then I smiled. So I guess this means that my commitment to Jani is so deep it goes beyond my conscious mind.
I know why I had the dream. I am not much of Freudian, but I know I want to escape again. Life has been so hard lately. It is August 22 and I still haven’t been able to pay the rent on Jani’s apartment. This is the deepest into the month we have ever gone without paying the rent on one of the apartments. Right now, the cost of rent keeps increasing with late fees and legal fees as the apartment complex begins the process of eviction. It is coming down the pike now. I don’t know how much longer.
If we can make to September 18th, I can cash out my retirement account and use that, but that account only has four grand. It will buy us another month or so (given how far behind we are now). And then what? There is nothing on the horizon. I still teach but because of my need to take care of Jani I still cannot work enough to pay the rent on both apartments. Every month that we actually manage to pay rent is just delaying the inevitable.
But that doesn’t bother me as much as Jani’s struggles. She is trying so, so, so hard to keep from going back to the hospital, not that UCLA seems to want to take her. If they wouldn’t take her when she tried to cut her wrists with a serrated piece of metal in her therapist’s office, I don’t know what else they want? Death? I know it is because they don’t know what else to do. There are no more medications to try and without new meds Blue Shield won’t pay for her stay.
Things are up and down. She loves to help me cook. But she also has developed a bad habit of touching the pots and pans when they are on the stove. Last weekend, she grabbed the frying pan and burned her fingers. Not badly, thankfully, because it wasn’t up to full heat, but she seemed to have no awareness that touching the stove will burn her. We ran her hand under cold water and called UCLA again. I left a message but they never called me back.
The next day, I turned around while cooking to discover she was touching the pan again, but this time she had put on an oven mitt. I was so proud of her and she was proud of herself. I thought maybe things are turning around.
Then today, at Denny’s, she decided she was unable to wait for her food and grabbed my arm, putting it up against her neck. “What are you doing?” I asked her.
“Trying to choke myself,” she replied. I pulled my arm away but she kept fighting for it. When she couldn’t get it, she tried to choke herself, something she hasn’t done in years.
Are you listening Dr. DeAntonio at UCLA?
Send her to residential, you say? What’s to stop her from choking herself there?
Then she spilled water on herself and tried to strip naked in Denny’s. But that is nothing these days.
I am starting to crack. Not the “I am going to end it all!” crack. Like I said, there is no escape. I spend my days performing surgery on Jani’s number hallucinations who she brings to me with broken legs or severed limbs (the only thing that will engage her when there is nothing going on). I never get a break. I can never stop.
So of course I want out. I want out of this life.
But I can’t go.
Escape is just a mirage in the desert. I know it will disappear as soon as I get there.
All I have right now is the desert. I know that one day the rains will come again and the flowers will bloom. I know nothing lasts forever.
But the rains are a long way off right now.