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We Put the Weights All Around Ourselves (The Waste Land)

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.

 

Just 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.

 

Alone.

 

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.

 

Why?

 

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.

 

I sigh.

 

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.

 

Me: Why?

 

Jani: She broke her arm.

 

Jani has never broken a bone in her life.

 

Me: How?

 

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?

 

Jani: Yes.

 

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?

 

You bet.

 

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.

 

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22 comments on “We Put the Weights All Around Ourselves (The Waste Land)

  1. After reading this, I sort of feel like the control group on this theory, because we are almost the complete opposite of what you describe. Our son is adopted. We’ve been married 21 years, only marriage for both of us. Tom is the stat at home parent, and has been for 16 years (Tim will be 17 soon). No one has to stay. There’s no biological tie between Tim and me or Tim and Tom. We could have disrupted the adoption – relinquished our rights back to The State. Instead we chose to plan and push on together.

  2. “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.

    Why would you take a shot at these people? It isn’t their fault that they don’t have children or don’t have mentally ill or special needs children or children that take up all of their time. I know that we don’t understand because we haven’t been there, and that we’re not all sympathetic, but some of us are. And what else can we do beyond that?
    I’ve never commented before but have been reading your blog for a while, and that kind of hurt.

    Note from Michael: Remember I am expressing my feelings here, feelings that are not always based on reality or are even justified. What I was expressing is what I feel in certain moments. I am human and like all humans am capable of lashing out at innocent people when hurt, much like an injured animal. My point is that under stress and pressure I can feel all sorts of things, not all of which are necessarily true or grounded in reality. I hope that helps explain it. I wish I could explain it better but words seem to be failing me this morning.

  3. I have great faith that you can tell Jani’s story. Not Michael’s story. Jani’s story. She has been entrusted to your hands. You are the sole story holder of her written story. Susan holds a different, equally important story. You however, must put it to paper.

    I know you can do it.

    Amy
    Logan’s Mommy

    P.S. I may want your agent’s contact info. I hold the story of Loving my Logan, and then being forced to let him go. I need to get it out on paper, too. My journals are my gift to my children, all of them.

    Note from Michael: No problem. You can email me at michaeljohnschofield@me.com.

  4. Relating
    I can understand this from the child’s perspective.

    I am 23 and certainly more functional than a child. My symptoms are mostly well contained by my medicines…but not always. I often have to result to the skills I’ve worked hard to learn in therapy. Those skills are my lifeline.

    I have 2 sets of parents. My biological parents and my adoptive parents.

    Around my adoptive parents I try to share only the minimal details of my struggles with schizophrenia/aspergers/anxiety disorders. I don’t want to bog them down in the trappings of my mind. We’ve been through the part where they had to make sure I wasn’t a danger on myself. I clearly remember the confusion and pain on their faces when I talked about my desires to kill myself. My psychiatrist had decided I was not safe to be left alone but not so unsafe that I needed to be admitted. So when my boyfriend went to work, I went to stay with my parents until he got home. The strain of this eventually caused my parents to call the police on me because I simply wanted to go back to my apartment and relax. Instead the police detained me and I was sent back to the hospital.

    That was the breaking point. That was the point where I could see that it was too much stress on my parents to worry that much about me.

    Now, I don’t discuss how often I want to kill myself or the number of times I have tried. I don’t tell them the details of my paranoia. I don’t tell them that sometimes I believe they want to kill me. There is so much that I don’t tell them because I don’t want to cause them stress.

    It is the same with my birth parents. My mom knows more of the details but she lives 12 hours away and only sees me a few times a year. My dad barely understands my mental illness and the first time he met me, he couldn’t understand why I didn’t make eye contact right away. He didn’t understand one of the more simple aspects of my illness…I just don’t make regular eye contact due to having aspergers. I don’t know how I would explain the rest of my problems to him if he can’t understand that. So I don’t. I let him stay in the dark.

    I think there is a point when the mentally ill children come to understand what they are doing to their families. Gaining that knowledge hurts us. I don’t want to accept the responsibility that I am capable of driving my parents to wits end. I don’t like having to close off certain parts of myself around them so that those parts to tarnish the relationship.

    Note from Michael: It is not your fault. It is our responsibility. Your job is to stay live and try to find some happiness. It is our job to help. Your life is hard enough. Don’t feel bad for us parents.

  5. Nothing Is That Simple
    I don’t feel as if it is that simple, Micheal.

    My parents are divorced. It was not official until I was four; however, they had been separated, on-and-off since I was eighteen months. Their reason had nothing to do with mental illness – or, at least, not mine. My father was – and is – drug addicted (crack cocaine) and undoubtedly undiagnosed Bipolar Disorder or Schizoaffective. He was violent, and continually became a threat to us. My mother never called the cops because, when she threatened to or even so much picked up the phone, he would hold me over the stairs. One time, he even ripped the phone out of the wall and, with me in his arms, threw it at my mother. Their marriage was gone before I was conceived. In fact, when my mom found out she was pregnant, she actually already had an apartment that she planned to move in to. With me on the way, however, she fell into the ‘the baby will make things better’ idea.

    She herself is not entirely stable, either. Her emotions are incredibly intense, she often melts down, has a hard time dealing with the smallest of things and suffers from non-bizarre paranoia. She is a trauma victim – father who abandoned her, sexual abuse for years and, then, my father. One of my biggest points of self-loathing is that I know, I know I make it so much worse for her. She tries so hard, despite any affliction she may have, and having a mentally ill daughter must seem like the last straw at times – or all the times. God knows I made anything already wrong with her…worse. She certainly has gotten worse psychiatric-wise.

    I sometimes also wonder if, a lot of my parents’ stress about my illness, is that they see me in themselves. I know they do, too. And I wonder if, in certain cases, that can cause someone to run. Or perhaps they had a family member with the disease, feel responsible, and/or cannot bear to see that happen to their child. Not an excuse; but, perhaps… genetics can play a role, in both direct or indirect ways.

    You also ignore the fact that fathers and mothers of neurotypical children leave their families all the time. No illness – mental or otherwise – in anybody. They just leave, or cheat. No reason. And these are biological parents, as well. There is blood; but it holds no weight [to them].

    And then there are adoptive parents, or step-parents, who never leave or abandon their kids – no matter the illness, or pain or struggle.

    It certainly isn’t as simple as blood. Why families break is so much more complex than that.

    Also, though I know you in no meant it like that, and I am not asking you to censor your feelings, saying “and it is her fault in a way” – as I said, even though I know you didn’t mean it like that – can trigger a lot. Divorce in a family is a trauma. I know, even for me (with such clear evidence that my illness had nothing to do with it), that stirred a lot of anxiety. Once again, I know what you meant and I know that you don’t believe it; I just wanted to make sure you are aware of that.

    Erika

    Note from Michael: Very intense. I was being sarcastic when I said “It is her fault.” Sometimes I wish people wouldn’t take everything I say so literally. I was also only referring to parents with mentally ill kids, not parents with neurotypical children. I am aware that the divorce rate for everybody is over 50%.

  6. I understand these are just your opinions, but I, also, resent the implication that an adopted child cannot be as loved or commited to as a birth child. That is a statement that is always made by someone who has never adopted. I have 6 children. The last two I adopted when the first four were almost grown. They both have severe mental illness. My son has Fetal Alcohol Sydrome, Bi-Polar Disorder, ADHD, and is extremely developmentally challenged. My daughter has Fetal Alcohol Syndrome, Autism, Early Onset Schizophrenia, ADHD, and is extremely developmentally challenged. I do this by myself. And yes, they, also, need to be entertained all the time to keep them going. But there is no way in hell I love them less than the first four.
    I read your blog and completely empathize with what you go through with Jani, but please don’t assume it is greater than what the rest of us go through.

    Note from Michael: Jesus, did I at any time say that people who adopt love their children any less? Did I ever say an adopted child cannot be loved as much. No, I did not. What I said was that men, MEN, not you, Lynn, who do not have blood connection to their child are less likely to stay through the challenges of a special need child. Stop being so sensitive and reading things I didn’t actually say. Never assume I “imply” anything because I don’t. I say exactly what I mean.

  7. I am sorry. I should never have commented. I don’t usually and it won’t happen again.

    Note from Michael: Don’t worry about it. We can all be oversensitive. I certainly was. It is a rough life for us both.

  8. I could write a lot about this post… but instead I’m going to just simply say this: your feelings are your feelings. You shouldn’t have to worry about your words being taken the wrong way and you shouldn’t have to worry about defending your emotions. This is your story. No one else’s.

    You and Susan and Jani and Bodhi are an amazing family. You bring hope and faith to people that feel isolated from the rest of the world.

  9. Opinions….
    Seriously?? I cannot believe some of the things that are picked upon and apart here. I understand how a reader can feel “involved” enough to have an opinion when regularly reading about another persons life, I too have opinions. However, this is not your life. This story is not about you or anyone in your life. These are the thoughts and feelings of a person in a very specific situation. A very intense and specific situation. The statements here are not directed at “you” and to take such personal offense is really quite narcissistic. While I understand being in a similar situation can cause a person to be defensive…mirrors often reflect a truth that hurts (I’ve felt a few reality smacks myself). Just please keep in mind that while we chose to read this blog, Michael lives this life. Knowing what we do from what he shares with us, do you really think he has time or energy to stop and filter every word and/or emotion b/c someone may take it the wrong way? Just sayin’…

  10. Michael, I said that I knew what you meant and that I know that you don’t actually believe that. All I was saying was that, be aware, it could trigger something if read a certain way – and that it will be. I’m not asking you to censor your writing nor change it. Just that, if a response comes in like that, be prepared for it and be sympathetic to it.

    I know you were referring to families with mental illness. You said that blood was the thing that kept you, and I was simply suggesting that, if blood was that powerful, divorce wouldn’t exist in most cases – at all. Just suggesting it was/is not that simple. The reasons are so complex, and it’s painful for everyone (though, obviously, there is no justification).

    I was just throwing opinions around.

    You know that I am on your side, and you know that I understand what mental illness is like. I’m not criticizing you. Just throwing opinions around, and pointing out that what you said could trigger something (no matter how you meant it, and I know how you did) – and I’m not asking you to censor, either. I’m truly sorry if it came out that way…really, I am.

  11. My previous comment has not been approved yet; but I will go ahead and submit this now.

    Thinking back on the words of that comment, they did sound emotive and angry. I apologize if this hurt you in any way. They were, however, in response to feeling attacked by your response to my first comment. Perhaps I read something that wasn’t there; but it did feel angry, and I couldn’t understand why. As you mentioned, we are all animals: when scared or hurt, we lash out a paw with claws unsheathed. And, when there is any PTSD involved in the psyche that controls that paw (and I don’t think it’s too big of a leap to say that, in both of our situations – the ill and the parent – can suffer from such an impact), the paw often lashes out at someone who isn’t enemy at all. I think that’s what happened in my response to your response. I read what wasn’t there.

    Erika

  12. Susan
    Do you still love Susan? I understand your life is very sirupted, but both of you have rights to happiness.

    Note from Michael: I think I love her more than I did when we got married. It is hard to explain. I am happier being with her than not.

  13. yur last comment about your love for your wife was beautiful. i love read what yu blog about. i pray for yu and your family. i cant wait to read your book!

  14. I think the spirit of what you’re saying is true. I slowly had to stop telling people around me about my mental health symptoms and terrifying, dark thoughts. Because they happen all the time, and other people are expecting me to have a low day and then bounce back, and when I don’t, they get scared, confused, and ultimately angry. At me. My parents essentially looked the other way and pushed me out the door when they got the chance. Somehow, magically, barely, I functioned minimally enough on my own through hospitalization, medication, and destroying my credit, to stay alive. Friends are the worst. My “frontline” personality is charming, funny, intelligent, and seductive, and people tend to really like me. Every time I think that new person might stick around. They never do. It’s only a matter of time, as the layers are peeled back. I don’t know why my husband stays. We fight all the time. We love each other, but we are not happy. Maybe he is just afraid of what will happen if he leaves. And honestly, if that’s all I have, I’ll take it for now.

  15. Does Jani know there is a book being written about her?

    Note from Michael: Yes, but it is not about her. It is about all of us.

  16. Hi Michael and family,
    I just wanted to say that you are inspiring to me, and I’m amazed at the difficulties you fight each and every day. I’m looking forward to reading your book, and I hope you will continue blogging as well! I try to contribute money as often as I can, but I’m a poor college student and can’t afford much. I wish you luck and will continue to follow you as you carry on your difficult and dangerous journey. You are in my hopes and prayers!

  17. I cannot imagine what it is like on a daily basis. I work part-time (only every other weekend) at a Mental Health live in facility for adults. I love the residents and enjoy working with them; I only get a taste of what Mental Illness is like (and it working with adults). I come home mentally tired and worn out. This is your life everyday all day. Like you said, there are no vacations, nights out or vacations. I can’t imagine what life is like for your family. Please know that there are people who do not have mentally ill children that are praying for you. I follow your blog because in the end I have to have hope for you and Jani. I have to have hoped that it will get better, like I do for the residents I work with. I work with them because at the end of the day, if I can break through for one moment, then it was a good day. Please have hoped at least in one moment of your day that you are making Jani’s hard life a little bit easier in that one moment of clarity. She knows that love you and Susan have for her because you keep fighting everyday for her.

  18. As a former English major and current teacher, I can tell you that I totally get it and that I see that you are writing from a certain perspective and emotional state at any given time. People out there, have any of you ever had a journal or diary that you wrote in and would have been mortified at times to go back and re-read the way in which you recorded things AT THAT TIME. Well that is people should be reading Michael’s comments on this blog and if people understood that perspective I guarantee the negative feedback would be cut in HALF!!!!!!

  19. Izzy!
    Hi Michael!!!… I saw that u favorited a video on youtube of Izzy and Jani.. then i looked at all of Izzy’s video (thinking she might have been Schizophrenic)…. And Jani is in a lot of them…. So is Izzy’s mom like one of Jani’s interns?.. Does she still have any interns?
    Just wondering!! 🙂 bye!!

    Note from Michael: Izzy’s grandmother, actually. No, she is not an intern. She is a really good friend of ours. Jani has one intern, Julian, who is really wonderful but is in the hospital dealing with a very serious blood disorder. We are all praying for her (Julian). All the Glendale College interns are gone and have been for awhile. We also have another friend, Elayne, who every other Sunday takes Jani so we can do the radio show. That’s about it.

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