Month: December 2010

Dead and Gone, but Not Forgotten (Sing)



That’s how many seconds you would have lived if you died on your 75th birthday, the average lifespan of the American male. 2 point 3 billion seconds. That’s all you have, if you’re lucky.




On January 14th, 2011, that is how many seconds will have elapsed since the day I was born.


I am too tired to do the math to figure out exactly to this second as I write how many seconds have elapsed in my life, but I am easily over one point one billion. And they are still ticking away. Tick, tock. Tick, tock. Tick, tock.


But this isn’t about the inevitability of death, even though as a smoker I probably won’t make it to 75. This isn’t about what I have left. This is about what is already gone.


One point one billion moments gone. Gone forever. Similar moments may come again but if every second is unique, and in some way they all are, then the ones that have already passed are gone, never to return.


I have already lived them.


What bothers me is not the seconds left. What bothers me is the ones that have already gone. What bothers me is what I missed.


A second is so little time. So little time for something that will never come again. So little time to savor a moment, because seconds cascade after each other like the 500,000 gallons of water that go over Niagara Falls every second. Before the human mind can even process the presence of a second, it is already gone, followed by another and another and another. So much of our life slips away while we are busy thinking about seconds before or seconds to come.


How many of those one point one billion do I remember?


Not many.


Not enough.


Or too many.


It’s one of the reasons why writing this book is so difficult. How do I pare down the 260,350,200 seconds since Jani was born into 88,000 words? That’s approximately 3000 seconds per word. 49 minutes per word.

Tick, tock. Tick, tock. Tick, tock. They are still going.


The most common question I am asked by people who hear of our story and who do not have a special needs child is “How do you do it?”


Like there is a choice in the matter.


In essence, they are asking me “How do you keep going?” What is left unsaid is the other half of that question: “…when you know schizophrenia is a lifetime illness?”


In other words, how do I keep going knowing that this is for the rest of my life? Actually, it is longer than that. I will still be worrying about Jani the moment I draw my final breath. If there is any life after this, if any consciousness remains, I will remain worried about her until the end of time, until the seconds run dry. I will worry about her for eternity.


I will worry about Bodhi for an eternity, too. I will worry about every mentally ill child I have met and still have to meet. I will worry about the ones I don’t yet know about, still out there in the dark. I will worry about your child, mentally ill or not. If I have come into contact with your child, if I have learned their story, I carry that with me forever, or at least until there is nothing left of me to manifest an emotion.


I still get emails suggesting cures. I appreciate their concern but I am not looking for a cure. Even putting aside the spiritual suggestions, I have to evaluate the whole concept of a cure. I know several people who work tirelessly to raise funds for various cures, in particular cures for various cancers, like breast cancer. I admire them. I do. There are organizations out there raising funds for research into medical cures for mental illnesses, even schizophrenia. I admire them, although that is not my area of advocacy. I advocate for the lives that mentally ill children live now, not for what might be, but I am glad they are doing it.


It is not about an absence of hope. That is not what I feel. I have no idea if a cure for schizophrenia will be found. One day it probably will.


But the seconds are still ticking away. Life is still slipping away. I cannot wait. None of us can. We have what we have. We have to make it work. We have to improve life as it passes us now. I suppose I don’t think about a cure for the same reason I don’t think about heaven. It doesn’t matter. Whatever happens when we get to end of our lives really doesn’t matter. Should we really let 2.3 billion seconds tick away worrying about what comes after the last one?


So I don’t want us to let any more seconds tick away waiting for a cure. I don’t want to let any more seconds tick away worrying about what comes after this second.


Is the human subconscious mind really like a video tape, with a wheel somewhere deep inside our brains slowly spooling away, recording every second of our lives? Does the subconscious even exist?


What if it doesn’t? What if most of those 1.1 billion seconds I have lived have not been recorded? What if the human mind is like a DVR set to “Save until space is needed?” What if it erases as it goes, like a computer memory, dumping whole days, weeks, months, years from our lives as we live to make room for the seconds that keep coming? It doesn’t even take sleeping. The very act of living will require the mind to erase memories as it goes, to make room for the detailed memories of the present.


Twelve hours ago, I experienced a moment. So much of it is already gone, but then how much did I pay attention to as it happened? What I have left I must record before this day ends and the DVR in my mind begins to erase, and new seconds come, with new worries. I have to freeze time, even if it only for this moment, this second.


I arrive at Bodhi’s preschool from CSUN. I punch in the code to open the door. I head for Bodhi’s classroom, the “Two’s” (for age group), exchanging pleasantries with the owner and front office staff, you know the kind of thing we do every time we pass somebody that we know because common decency requires it, the “How are you? Fine. How are you? Fine,” words that are forgotten even before you have finished speaking them. I am already thinking ahead, to future seconds. This one isn’t important. I will have a thousand more like this. I am thinking about Jani. Susan and Jani are here. They come here the mornings that I work, because it is something to keep Jani occupied, to fill the constant need for stimulation that she has, to keep her mind occupied so it doesn’t turn on her, making her feel itchy and provoking her into sticking a sharp foreign object in her ears to alleviate it (because almost everything that can fit into the ear canal is sharp). What will I have to do to keep Jani occupied from now, twelve noon, to two forty, when she goes to school? A little over two hours. An eternity for us because of Jani’s need for engagement every second of those two hours and forty minutes. 9600 seconds. And every one of them must be filled. Even during the drive from one place to another Jani begins to self-injure, for there is not enough to distract her from the psychosis. I talk. I talk about everything and anything. I teach. Much of the time, I am talking to myself. Jani is slipping into her world. I see her start to scratch herself or look for something to stick in her ears. I keep talking, about anything that I hope will engage her. She used to listen. Now whatever is in her head is too much. She can’t. She can’t hang. Suddenly, she will excitedly rub her hands and ask me where we are going, even though she knows. I know she knows. She wants confirmation, constant confirmation. Maybe this dulls whatever she is experiencing inside her head. I end up saying the same thing over and over again. “Where are we going?” “The animal shelter.” Excited rubbing of hands. “Where are we?” “Castaic?” “Are we in Castaic yet?” “Yes.” “Where are we going?” “The shelter?” “Is this Castaic?” “Yes.”


This is what I am thinking. I am thinking about the drive to the shelter, which is where I plan to take her. I am thinking about how I will have to give her an exact length of time for travel. I am thinking about how long she will last at the shelter. I am thinking what else I can do if they don’t let us work with the animals. I am thinking how to fill 9600 seconds until she becomes someone’s problem for two hours.


I open the door to the “Two’s” room. Jani is serving lunch to the kids. She likes to do this. She panics at the idea that we will not get to Bodhi’s daycare in time to serve lunch.


Susan is also helping serve. “There’s Daddy!” she says with great relief, as if I have been gone two weeks instead of two hours. I get it. I do. She’s been burning through the last 9600 seconds, trying to fill everyone of them. She is tired. She wants me to take over with Jani. This has actually been a pretty good morning, but she is still wiped out.


I acknowledge her, but I cannot remember what I said. I don’t have time for sympathy. It is my turn now. My 9600 seconds with Jani. Susan can take care of herself. I guess that is my attitude. Susan only needs me to take over with Jani. So often, that is what it feels like. That is why so many marriages crumble under the stress of a child with special needs. You become a staff person to the child, the caretaker, and whatever needs you as an individual have are subsumed under that. In time, you start to forget what you ever needed, why you married each other in the first place, what you used to provide to each other emotionally. It is not hatred or resentment, at least not for me. I just become dead inside, going through the motions of filling 9600 seconds like a machine.


Whatever Susan needs, whatever she needs emotionally, is lost under the sheer need for relief from filling the time. In this moment, all she knows is she needs me to take over. Good day or bad, she needs me to take over. There is nothing else, or at least nothing else that we can feel for each other in this moment. This is the hand-off. This is what we do. This is, most of the time, our only interaction.


Why do it? Why let Jani dominate our lives like this? Easy. The alternative seems more painful. We could not move on without Jani. Whatever we gained back from sending her away would be swallowed up by the gaping hole she would leave behind in our hearts. It is almost a symbiotic relationship. We cannot live without her. She may be killing us slowly but to lose her would kill us faster.


I’ll take the slow death over the fast death any day.


I look around for Bodhi. I actually have to focus on every boy in the class to make sure he is not Bodhi. Oh my God. Is that how bad it has become? I can pick Jani out of a crowd of blonde girls in a heartbeat. I could find her in the wilderness if I had to. My eyes are automatically drawn to her. But every time I see Bodhi, I realize, if I let myself realize it, that I forget what he looks like. Not completely. I know he is blond. I know his hair style. I know his approximate weight and height. But Jani’s face is burned into my consciousness. I struggle to recall Bodhi’s. It is almost like every time I see him I am seeing him for the first time, like he is reborn to me every time he comes into my view.


It takes me several seconds to ascertain that none of the boys sitting at the tables eating are Bodhi. I look around the classroom. There are no other little boys. “Where’s Bodhi?” I ask. “He’s in speech therapy,” Susan answers.


Oh. Okay. So he is fine then. I don’t have to worry about him. I can turn my attention to Jani.


Jani is wearing a glove on her right hand, the serving hand. It is a clear plastic glove, not tight like a latex glove, but loose fitting, like she put a sandwich bag over her hand.


This strikes me. The glove. It seems so out of place on her. Why? I have to think. It takes me a minute. I know. It seems so… thoughtful, rational. Jani’s level of hygiene ebbs and flows with her psychosis, but even in the best of times we have to remind her to flush the toilet and wash her hands and when she washes her hands it is a split second under water, then moving again. Always moving. The presence of the glove tells me that she was able to slow her mind down enough to actually put it on. Usually she is too impulsive. Hell, she takes off her shoes in public all the time, which scares me because I am terrified she is going to step on something some day. This is not impulsive. Some how she has commanded her mind to actually put the glove on. Even if she was directed to by the teacher, it still says something that she was able to follow this command.


The presence of the glove is a sign of normalcy. It is like suddenly getting an image of Jani actually functioning in our world. I find myself thinking of her future, trying to imagine her, in twenty years, working in a career that requires gloves. Doctor? Vet? Hell, cook is fine with me. Anything is fine with me. I realize how much I don’t think about Jani’s future and if she will be able to work a job at all. It’s not that she doesn’t have the energy. Does she have the patience? Can she control her impulses enough?


I watch her. She is serving chopped broccoli to the kids. She takes the bowl from the cart and places it on the table near the child. She takes the large serving spoon inside. She gathers up broccoli bits in the spoon and moves it across and down to the child’s plate, slowly, deliberately. A casual action for us, but she is treating the broccoli like it is uranium (another job that requires gloves… and a full radiation suit) or DNA from its source to the petri dish for examination. I can actually see what is going on inside her mind. Her focus. Her attention to the maintaining the spoonful of broccoli level. It can see her forcibly slowing her mind down to the speed necessarily to carry out what for most of us is a thoughtless action. It is nothing like how she eats, where the spoon shovels in food and more gets on her than in her mouth. Here, now, she is not even dumping the broccoli on the plates of the children. She is slowly lowering the spoon, like one would lower a bulldozer’s blade, until it is a half-inch above the plate. Then she slowly rotates her wrist, carefully sliding the broccoli onto the plate. Then she withdraws and moves on to the next child.


When she is done, she returns the bowl to the cart. Then turns to me, jumping around and clapping. Her mind has sped up again. She is back to her normal self, normal for her anyway.


It is not until now, as I write this, that I realize the massive amount of exertion it must have taken her to so carefully serve the broccoli, pasta in meat sauce, apple sauce, and milk. When she serves the milk, I can see the slight shake of the jug as she pours it into a cup. It is not heavy. The milk is almost gone. She is pouring the last drops, but still her hand is shaking. It is shaking because she is trying to hold it exactly over the middle of the cup of the child.


My God. She is fighting her own mind, a mind compelling her to do God knows what, a mind that will not allow her to sit still even for a moment. She is fighting her disease right in front of me. It comes back as soon as she is done serving. But for that moment, those moments, she battles it back. She fights it off long enough to have a moment that the rest of us take for granted every day.


This is one of the greatest moments of my life. There have been other moments like this, but I so often miss them because I am worried about the moments to come.


I am glad I didn’t miss this one.


A little girl comes up to me. She is crying for her mommy. She is inconsolable. A lot of the kids there ask for their mommies every time I come in. They ask me as if all parents come from the same place. They know I am Bodhi’s father and so I must know where their mommy is. Usually I just give them meaningless platitudes about how their mommy will be coming soon, and pat them on the end. But this little girl is not just missing her mommy. She is in pain. Emotional pain.


She is coming to me, her nose pouring mucus from continual crying. I start to reach down to pat her head, ready to give another empty phrase of comfort, but this time I stop. I know it will be empty comfort. And this little girl is in pain. I can feel it. I can feel what she feels. Without thinking, I pick her up in my arms and hold her against me. I don’t think I am violating any official rules, or maybe I am since I don’t work here, but in this day and age a man must always think twice with a child not his own. All of us are potential perverts now, all of us with the capacity to molest. But fuck all of that. This child needs me.


I hold her and rock her. She stops crying and settles her head down on my shoulder.

“I’ve never seen her bond with a man like that,” Bodhi’s teacher tells me. “Cuz, you know, usually it is women who come in here.”


Jani is watching me. “She likes you,” she says, smiling and rubbing her hands together, struggling again to channel that energy.


This little girl feels so much like Bodhi in my arms. I have forgotten what Jani felt like.


This pierces my heart. I have forgotten. I have forgotten. After all the hell, and daily fight against her schizophrenia and the system, I have forgotten what it felt like to hold her in my arms when she was this age. I can’t remember. All I can remember is the struggle to fill the seconds, to fight for more seconds. I can’t remember holding Jani, even though I know I did.


That was another person now. That Michael Schofield died. Those moments are gone and I will never get them back.


This is what I lost. I didn’t realize it until now. This is what I lost. I didn’t lose Jani. I lost myself trying to save her. And I lost my memories of who she was prior to the psychosis.


Maybe holding that little girl was my way of trying to remember that I was once just a father to a little girl, a little girl like this.