In early March I finished the first draft of my book and emailed it off to my editor in New York.
And then I waited.
I knew I wasn’t done. Nobody turns in a book draft and has the editor say, “This is perfect! Ready to go the copyeditor!” When it comes to publishing, the question is not whether you will have to rewrite but HOW MUCH will have to be rewritten. So I was prepared for that. I am an imperfect man who is an imperfect writer trying to tell an imperfect story. I am the writer, but I am a secondary character, telling a much larger story.
In my initial queries to how the reading was going, I got responses about the intensity, how difficult it must have been to write it, let alone live it.
Two days ago, my editor finished the manuscript and wrote a response. Most of what was in it didn’t surprise me. The manuscript is far too long (almost 125,000 words, when my contract calls for approximately 85,000 words), more than seven hundred pages double-spaced. Most of the initial feedback revolved around the need to “slash and burn” 20,000 to 25,000 words right off the top to even bring it into the length where it can be edited, along with scenes and sequences that were either too long as written or wholly unnecessary (and this is after a year spent trying to compress more than six years into a single book).
What surprised me, though, was that the email came forwarded from my agent, not directly from my editor. He forwarded her email to him.
I found this unusual. First, I teach writing for a living, or what living remains in it (I teach various forms of expository composition at CSUN) so the concept of revision is second nature to me. A piece of writing is never “perfect.” It is never “finished.” All you can do is just get as close as you can.
I also know I am still learning how to write and will always be. I can take criticism (eventually).
And editors don’t handle your work with kid gloves. That is not their job. Their job is to produce the best quality book possible. So fear of offending the writer is not something that editors and agents can worry about. They have to be blunt. And as writers we need them to be blunt. It is the only way we can get better.
The criticism, if you want to call it that, was, however, rather mild compared to what I am used to.
So initially I couldn’t figure out why my editor didn’t just send the email to me. It was not until about half way through that something jumped out at me.
Taking off my editor’s hat for a moment, though, I’m worried about how Michael will take all this. I get the feeling – through my conversations with him as well as what I’ve read so far – that he has very conflicted feelings in regard to his place in the world, and his position in life being defined primarily as Jani’s father. And yet, here I am saying once again (and I’m clearly not the first one), no, we need January first. In one sense, that’s very powerful – and certainly a theme I’d like him to explore in the book (editor’s hat back on). It makes the title all the more powerful and the subject matter very compelling. But I also wonder if that will hurt or damage his psyche. –my editor.
Huh? Hurt or damage my psyche?
Well, that is very nice of her to be concerned for my psyche, but I didn’t get it. I’m a professional. I have a contractual obligation to fulfill. How can suggestions from my editor hurt my psyche? My psyche has nothing to do with it. I have a job to do.
I was sincerely grateful that she cared so much for me, but I didn’t get where her concern was coming from.
While I was puzzling over this, I was updating my Facebook status: Exhausted from grading papers. Shockingly, I actually do have a job, or what the rest of the world would call a job. My real job is secret service agent to Jani.
Right now we are wrapping up spring break at CSUN and I have been up late almost every night grading the second major assignment posted by my students in my two classes. The second line I added out of an oversensitivity to the heat I sometimes take on this blog when I have to beg for money. I wonder if sometimes people forget that I do actually have a job. I am a college lecturer. Yet, in my more sensitive moments, I feel like a deadbeat when people post comments that criticize me for having to ask for money from strangers on the internet to support my family in two separate apartments. People have been very generous, but it is not like we get enough in donations from the Paypal link to live the high life. The donations subsidize my job. They cannot and never will replace it.
Combined, the second and third line in that Facebook update constitute a petty shot at my critics.
“Or what the rest of the world would call a job” is a shot at those who don’t have mentally ill or a severely special needs child or children that takes up all your time. Nobody I know with a mentally ill child is flush with money. This is because our child’s illness (or children for the really unlucky) slowly erodes your ability to function like a normal person. It starts slowly and insidiously. Everywhere you go in public, you are always on high alert, ready for your child to run, have a breakdown, hurt himself or herself or others, etc. You start to live in perpetual fear of what the next moment will bring. Sleep is your only respite, although for those who have not been able to split into two apartments, those who have their other child or children sleep in the bed with them because they are afraid of the mentally ill sibling, with the bedroom door locked, those who have woken up to find their child standing over them, calmly telling them they are going to kill them, there is no respite in sleep, either.
When your child is in active psychosis, they never grow up. They, and you, live a nightmarish version of the Peter Pan fairytale, except in this version Peter Pan alternates between being loving and trying to kill you or your other children or pets and the Never Never Land this Peter Pan leads you to is called so because you “never never” want to go there.
But you do. Because this is your child. You brought them into the world. You gave them life. You can’t change your mind now just because somewhere along the line the wiring got screwed up, because strings of DNA and gene sequences didn’t copy like they were supposed to.
When it comes to your child, there is a “no refund, no return” policy.
Eventually, some go to residentials. This is not a choice. This is because they have no choice. No parent would ever willingly make that choice unless it was to save the life of their child.
It’s interesting that that is the only reason we do it. Never to stop the violence against us. Never even to protect younger siblings (or sometimes older siblings), no matter how terrified we may be for them. Every parent I have known who has sent their child to residential has done so for one reason and one reason alone:
Because I can’t protect him anymore.
Because I can’t protect her anymore.
I can’t keep her safe.
I can’t keep him safe.
I got the two apartments to keep Bodhi safe.
I can barely teach anymore because long ago that ceased to be my primary job. My primary job, and the explanation of the final job, is to keep Jani safe.
You donations pay for me to keep Jani safe. Because only Susan and I can.
And keeping another human being safe from themselves is a 24 hour a day, seven day a week, 365 day a year job.
Which is what my last line means: My real job is secret service agent to Jani.
For us parents with mentally ill/spectrum children, the job we do to bring home a paycheck is not our real job. And every minute that I am gone teaching I live in fear of what will happen while I am gone. We are secret service agents who ended up assigned to protect our children from themselves, from the things that they can see but we can’t, from their own minds.
There are two kinds of families with a mentally ill child.
In the first, both parents are still together. At one time, both worked. Then the illness became acute. One parent, usually the mother, has to stop working. The other parent, usually the father, continues to work but his attention is never quite in the job again. Slowly, the hours erode. Too many times having to leave because of an emergency at the school, a psychotic breakdown. Too many times rushing home early to become a human shield to protect your other children, to try and calm down the child you love desperately and would trade your whole mind for their fractured one in a second if you could. Too many times of not being able to go to company social events or work late because your family needs you.
In my case, my employer, my supervisor, has been extraordinarily patient with me, working around me whenever possible. Most are not so lucky.
Most end up on unemployment. And then you carry the financial burden on top of having to fight the disease inside your child that can’t be fixed, only, if you are lucky, managed. And to manage it takes more than one person. It takes a village. But generally it is just the two of you.
And in your pain, exhaustion, and desperation, you want to scream at God, but God isn’t around, so you scream at the only person who is: your spouse. You cut them down because they can’t help you and you can’t help them. It is just the two of you in this private hell.
And then in the second kind of family, one parent, usually the man, leaves.
Abandons the situation. Abandons the family.
I have no idea how those parents do it. Left alone, with no backup at all, they carry on raising their mentally ill child, and often other children.
In the private online support group Susan and I started, there are nearly two hundred families all across the country and the world, all with children who are mentally ill. Some are doing better than Jani. Many are far worse.
Yet I can count the number of men in the group, including myself, on one hand. There is one father, a close friend whose son once saved Jani when she was trying to jump out her second story bedroom window, whose wife left.
All the rest are single mothers.
Based on my albeit small sample size, making a ballpark guess using no formal research or statistics, I would say the divorce rate for parents with a mentally ill child has got to be at least 80%, probably higher.
There are married women in the group, but they represent the overwhelming minority. All told, I could probably count the number of fathers I know with a mentally ill child who are still married to that child’s mother on two hands.
What conclusions can we draw from this?
Women are stronger? I think there is little doubt of that. The mothers I know cry themselves to sleep and almost all of them have severe health problems of one sort or another. I know one with MS. Having a mentally ill child doesn’t cause illness in the parent but if the parent already has one, it will make it much worse. Stress and lack of sleep speed up the development of health problems. Their bodies slowly break down and they live with the terror of wondering what will happen to their child and children if and when they are gone.
Parents with children with severe physical illnesses also have an extremely high rate of divorce or separation. Whether mental or physical illness, it is your child, and the illness consumes your every waking moment, far more than any affliction you have ever had or will have (which is partly why the comments to me to quit smoking fall on deaf ears-my health is WAY down the list of my concerns). Having a special needs child WILL kill you, eventually. You already know that. You’ve accepted that. Your life means nothing anymore anyway. You just got to get your family through this day and you worry about tomorrow tomorrow.
You will die. This is taking years off your life? You just hope they are the years on the backend, years after your child is an adult and you’ve got them stabilized and set them up so they can function after you are dead and gone. It is a race against time for all of us.
So if you don’t care about yourself anymore, how are you supposed to care about your spouse? You have nothing left to give.
Every break you take comes at the expense of your spouse, and vice versa. Because it is just the two of you. No government aid. No respite. No “nights out.” No vacations.
Since our story has become public, thousands of people in similar situations have sought us out. They have become our friends. Because we are the only ones who can understand each other.
And I have watched marriage after marriage fall apart.
Recently, a support group member’s husband served her with divorce papers. While her schizophrenic daughter was in the hospital. And she was six months pregnant. And she already had a toddler by this man. And the schizophrenic daughter thought it was her fault, which sent her deeper into psychosis.
Because it was her fault. In a way. She is the reason he is leaving. He can’t deal with it.
Her baby sister and her soon to be born sister are half-sisters. The toddler is losing a father. The unborn child (also a girl) will never know her father. And the schizophrenic girl, now 14, is losing another father. First she lost her biological father and now she is losing her step father.
I know another mother who adopted what turned out to be a mentally ill girl. The adoptive father left. She remarried. Now the second husband is on the way out.
What separates them from me? What makes me better than them? Hell, I bent. I nearly left Susan two years ago. I am no saint. I would have followed through had the woman I was pursuing not being scared off by my psyche. Once she realized how much baggage I carried, she was gone.
To this day, I am still repairing my marriage.
However, I had no intention of leaving my children. Only Susan. I was just stupid enough to think then that they wouldn’t be affected. Of course they would, but I was in agony and I wanted an escape. One came along and I nearly took it.
So why do these other fathers leave? What is the difference between them and me? I possess no special heroics. As much as I love Jani, it gets hard. There is no having a “normal” conversation with her. Let me share a snippet from tonight.
Jani: There’s a seven here.
Jani sees numbers. I can’t say they are anthropomorphic because they don’t have human features. They are more like animals. And many of them are carnivores, or “numbervores,” eating other numbers.
Of course, there is no seven here. I want Jani to take her shower and get ready for bed. I want my day to end. I want my break.
Me: Come on, Jani. Let’s take your shower.
Jani: There’s a seven here.
She is looking at me, pointing to a blank spot on the carpet, the look on her face like a child would have if she spotted a rattlesnake. She is looking for me to do something.
Me: There are no sevens allowed here. This is building nine. This is a seven-free zone.
Jani: The seven has a nine in its mouth. Tell it to drop the nine.
Me: Drop the nine, seven! I say sternly to the empty spot on the carpet.
Jani: Tell the seven to drop the nine.
Me: I just did.
Jani: But it wants the nine!
I sigh again.
Me: Seven, drop the nine!
Jani: It wants to stay.
Me: It can’t stay. It has to go back to building seven.
Jani: It won’t drop the nine. Drop the nine, seven. Tell the seven to drop the nine.
I wonder how long I will have to yell at this imaginary predatory seven until Jani sees it drop the invisible nine prey.
Me: Seven, drop the nine. Don’t make me call a one hundred!”
One hundreds are, apparently, sevens only natural predator.
Jani smiles and rubs her hands together excitedly.
Jani: The seven left.
I have this conversation with Jani several times a day. Other conversations are when she tells me she has a playdate with 24 Hours. She asks me all these questions about a hallucination I can’t see. Do I remember how old 24 Hours is? I am trying to focus on driving, trying to listen to the radio, trying to be normal, but I have to answer or she will keep asking. I wrack my brain. She is 10. 24 Hours is ten years old. Jani tells me when her birthday is. Then she tells me that 24 Hours is in the hospital.
Jani: She broke her arm.
Jani has never broken a bone in her life.
Jani: She jumped from the second floor.
This is what I fear the most.
Me: She is lucky she didn’t get seriously hurt.
I keep trying to reinforce this. If you wonder why I am so graphic with Jani about human anatomy, this is the reason. I want her to understand that jumping off a building has serious consequences. It might be easier if her hallucinations didn’t get hurt at all. But they do, just like us. Yet, they never die. No matter what they do, they never die. But Jani can.
Me:Is she telling you to jump from the second floor?
Me: But you’re not listening to her, are you?
Jani: No. I told her “24 Hours, no!” but she did it anyway.
Me: She is lucky to be alive. She could have broken her spine and then she would never be able to walk again.
Jani: She just broke her arm.
These are the conversations Jani has with me. Endlessly. It is almost impossible to get her to talk about something in this world. I talk to her about her world, both because then I remain her friend, along with her other “friends” but also because I need to know what they are doing.
The minutia of their lives, these hallucinations, Jani knows in excruciating detail. It is all I hear. Often I have to struggle to pay attention. It is so tempting to tune her out. But I can’t. I keep constantly having to snap back and forth between her world and the world I am in. 24 Hours birthday party that never happened and the car trying to merge into the lane in front of me. Constantly I must balance her world with the one we actually live in. I might as well be texting while driving. Both are as equally distracting.
So do I understand the desire to leave?
So why don’t I?
Because she is my child. My blood.
And as much as I hate to say it, as much as I think this will hurt some of my readers, that is why your husbands left. They were not and are not the biological father of your mentally ill child. They thought they knew what they were getting into. But they didn’t. And they can leave. So they do.
Anyone who doesn’t have to stay will eventually leave.
It is only blood that binds us.
I created Jani. I made her. She is my responsibility. And she always will be.
Now I understand why my editor was worried about my psyche. The key line is that he has very conflicted feelings in regard to his place in the world, and his position in life being defined primarily as Jani’s father.
Now I get it.
She realized what I hadn’t.
That my life is defined primarily as Jani’s father.
That is who I am. That is all I have left.
As much as I love Jani, the bluntness of that statement was hard to accept, even though that is really what the book is about.
My life is defined by Jani.
And that is what I have to accept.
And for those of you who have a mentally ill child, that is what you have to accept. And if you are thinking about entering into a romantic relationship, that is overall question you must ask yourself about your potential partner.
Can they accept it?
Note: This will be my last blog for a little while. I have to focus on rewrites of my book. I have to embrace who I am. April rent is paid. I don’t know how we will pay May or June. The publishing date for my book has been moved up to next spring so the final draft has to be ready by this July. When a draft is accepted for publication, the publisher will release the next part of my advance. So hopefully I only have three more months of begging strangers for money.