Update: I know I have several pages worth of comments and I am slowly making my way through them when I can, responding to every one, good or bad. Right now I have only gotten through comments made prior to 2/20/11. So if you haven’t seen your comment come up yet it just means it is still in the que.
This is not going to be my last blog. Maybe I said that in the heat of my emotions. I don’t know. I will blog again. In a few weeks, I will write a new blog updating everyone.
Michael, February 25th
Original blog begins here-
It’s not looking good. Even if we manage to get out of this month there is next month, and the month after that. Every time I put out a blog asking for money I get many wonderful people who do give and a few who attack me or criticize me for asking like winding up like this was some how my fault. You do realize mental illness does this to families, right? It destroys them, but if you send them away then you have no soul anyway. I have started looking around for other living arrangements. Friends who are real estate agents are looking but they are not hopeful because the only regular income I have is from teaching the two or three classes I still can each semester and it’s not enough. I have talked to the leasing office here about moving back into a two bedroom and I could afford the rent, but can’t prove that I make 3X the amount of rent (because I don’t). They require this. Even if I could somehow fake that, I can’t pay the rent on three apartments simultaneously, which is what would happen during the change-over. A friend referred us to a real estate agent, swearing she could help us, but when I told her how little money we have, she didn’t seem very hopeful. She said, “Good luck” like people do when they know you are screwed, as if they are hoping that maybe, just maybe, the bullet might miss you.
Jani is already freaking out at the idea of moving and will be probably be back in the hospital soon. So all of you who said she would “adjust” fine can go fuck yourselves. She’s not. She is regressing badly. I am not sure she will make it through this. She has done so well and gained so much of her life back in the past two years. Now she may lose it all.
I have to stop this blog for the time being. I have to focus on her and to try and save her. The stress of trying to get the money to pay rent has not helped her, but at this point I don’t see any way out. We need deposits and proof of income exceeding what I make.
So let this be a lesson to you: Nothing is ever as easy as you think it is.
I also have to stop because I just can’t deal with the handful of people who want me to fail. They are a tiny minority, but for some bizarre reason they want Jani in a residential. It will never happen.
My deepest gratitude to those who helped us. I will still do my best to help those with mentally ill children. Go to www.facebook.com/thejanifoundation. Under the “resources” tab of this website you can find our private “Parental Support Group” for parents with mentally ill/spectrum children.
I am not changing my ways. I will remain militant in my fight (sorry, Zell). I have to. Nobody else is doing it.
I just… I just can’t bring myself to write anymore. Not right now. Maybe in time but not right now.
That’s the problem with Facebook. Actually, it is a problem with me. For most people, Facebook is a way of staying more up to date about someone’s life than we ever used to be able. When I was a kid, the letter was a dying breed. I remember being pushed to write letters to my grandparents. I didn’t want to. What I hated the most about letters was that they were not a moment in time, not an episode, but more a clip show of everything that had happened in the last few months. I hated having to compress my life into two or three pages. My letters were like transmissions from Mars. By the time what I had written arrived in Australia, it was long out of date. Not that it contained any significant information. There was no point because the reply from Earth would take too long. Hence, the clip show, life on Spaceship Michael.
When I was a kid, telephone calls to Australia still cost a small fortune. This was long before the days of unlimited calling minutes. So phone calls were like letters, except with voice, quick, generalized updates on my life in America. No substance.
My paternal grandfather died before email was commercially available. None of the computers in our house had a modem. Not that it would have mattered. My grandmother never got in email before she died in 2005. She never got to know if we ever made it back from Mars.
Now there is Facebook. Most of it is “I’ve found a lonely pig in Farmville” or “I want you to join my Mafia.” I see many pages that are blank except for game references.
Then there are others whose status updates reflect an observation about the human condition or a general update on what is going on, “Werewolf has just checked in at Lee Ho Fook’s. Gonna get a big dish of beef chow mein.”
Some express frustration or happiness. Real emotions, or at least what you can fit into a 240 character update.
But there is something else Facebook can do, something I don’t even know Mark Zuckerberg realized when created it.
For all the negative attention it got when Tyler Clementi committed suicide by jumping off the George Washington Bridge (his intent to jump, along with an apology, was his final Facebook update) in reaction to his roommate’s streaming video of his sexual encounter with another man on Facebook, I have to wonder how many lives it has saved. You don’t get to hear about that.
When I am hurt or angry, I share it on my Facebook account. I do this for a childish reason. I am lashing out at the world. Facebook allows me to do that. It allows me to spread my rage and pain to all 500 plus of my “friends,” most of whom I have never met. I am not going to try and speculate as to why people commit suicide. But I do imagine that it is so often a decision made alone. Swallow a bottle of Aspirin and write “Goodbye Cruel World” on a piece of paper you leave on your desk. Or hang yourself from a leather belt in your bedroom. When that final moment comes that pushes you into that, you are alone. It is easy to ignore the tiny voice inside your head telling you no, that you are loved, that people need you, when there is nobody actually there to tell you that.
So when I vent on my Facebook account, I am doing so because Facebook allows me let the world know. I know it is awful, but it is true. I don’t sit and stew with it. I can lash out. I will say things like “None of you understand what this is like. You can all fucking go to hell.” I am not speaking to anyone in particular. All my life I have had a tendency to lash out at those who love me most. I suppose it is part of my mental illness. “Fuck you all!” I will scream into my status update. I am not saying this to any of my 500 plus friends. I am saying to the world.
But because of Facebook, the world responds now. Within seconds, no matter the time of day, responses start coming in. They are never angry. Generally they tell me to hang on. They share that they too feel like saying “Fuck you all!”
And I feel like a jackass for scaring people. But I also know I am not alone. Every time I think I am alone, that no one understands what this life is like, fifty comments appear underneath my status to say that they very much understand. They are living the same life. They never begrudge what I say. They never judge me. They just respond to remind me I am not alone. They don’t offer platitudes. They agree life sucks, which often makes me feel guilty because what they end up sharing is far worse than what I am going through.
Without Facebook, I think I might be dead by now. I might have cracked under the pressure. I still crack, and I crack in the public eye of my Facebook account, which scares the hell out of some people, including Susan (because it can be used against me to demonstrate my instability). But if I didn’t crack on Facebook, I would crack in the real world, and cracking out here will kill you.
I am cracking in the real world, but out here I can’t show it.
A perfect storm has come over me.
First, there is the book that I am writing. There is a certain individual who shows up in the comments section of my blog from time to time ever since the LA Times story on us was released nearly two years ago now. He or she hates my guts with a passion. Thinks I am “making” Jani into a schizophrenic for public attention. He or she cursed every public appearance we have made, particularly the Oprah appearance. By now this person seems like an old friend, except the kind that would happily see you thrown under a bus. But his or her’s strongest vitriol was triggered by the sale of my book. This person is convinced I am hoodwinking the world to turn an easy buck.
I bring this person up because he or she has no idea. Writing the book has been hell. I have to write it in present tense, which means I have to relive it. All of it. All over again. Every chapter I write pretty much destroys me emotionally, so much so I can barely get out of bed in the morning.
First, there is having to relive Jani’s decline. This has been the first time I have had to face the daughter I had and lost. Jani is better today, leaps and bounds better, but she will never be who she was. I didn’t deal with this sense of loss at the time. I refused to because to do so was to risk falling apart and I had to keep functioning, keep the family going. Only now am I dealing with the massive sense of loss. She is still alive and at the end of the day that, and her happiness, was all I asked God for back in the days when her illness was eating away at her personality until there was nothing left but the shell of what had been my daughter, like an abandoned insect husk.
She has come through. We stopped, at least for now, the advance of her disease. But she is not the same person. She is changed. How could she not?
And then there is my transformation, a transformation I didn’t realize had occurred until I was well into the book. And it is not a good transformation. Yes, Jani’s illness, and childhood mental illness in general, gave me a purpose in life, but I am not the same person either. My transformation was not into a hero. As Jani isolated, I went with her, refusing to let her go into the dark alone. So much so that I was willing to sacrifice everything else. I slowly destroyed my contact with the outside world as she did. I became mercurial, inconsistent, and sometimes cruel.
It is not easy to realize what you have become. There is a lot of good there. But there is also a lot of bad.
This book is killing me. I am glad it is almost done. The cost to my family to write it has been immense. I have no time during the day so I can only write at night. And I write into the wee hours to make my deadline, then find I can’t sleep. Then I fall asleep into troubled dreams, so deeply that Jani can’t wake me up. I feel like I am sleeping through life right now. I hate it.
Then there is Bodhi, who has continued to get worse ever since he turned three and aged out of the Los Angeles County Regional Center services, like speech therapy, occupational therapy, child development, etc. He has been diagnosed PDD (Pervasive Development Disorder). At three, autistic spectrum children are turned over to the school district’s IEP program. He gets free preschool. But where once he got individual therapy, now he shares it with other children. When he started the Regional Center services, he used to bite his wrists, so much that we tried gloves and bandaides to protect his skin. Over the nine months of Regional Center therapies, he stopped. Now the biting himself is back, He chews on himself constantly.
And he cries. Constantly. For reasons we can’t figure out. It is so continuous that tonight I yelled at him to stop crying.
Just what Jani used to do. The whole reason we split the family into two apartments.
I should be happy that Jani generally isn’t violent with him anymore, and I am. But part of the book is my memory of the first few months of his life, when I drove him every morning to a friend’s house so he would be safe, away from Jani. The friend had a daughter and I would come back to pick Bodhi up to find him watching cartoons with our friend’s little girl. And I have been forced to remember the agony of wishing his real sister could be like that.
Tonight, he said to me, “I want big sis.”
I know he does. He wants his sister to be a playmate. Jani is better. She serves him food. But she still doesn’t play with him. He wants her to rough and tumble with him. Jani doesn’t, I think because she knows she can’t. But he doesn’t understand. He wants his sister. And his sister is still distant. And he doesn’t understand why.
He doesn’t understand why every other night his mother leaves.
And then there is finances. I was supposed to be paid today for the online class I taught over the winter break. But my paperwork arrived in Payroll three days too late. So I didn’t get paid today. Instead, I won’t get the check until March 15th. Unlike the regular semester, when my pay per class is divided up over six months, winter and summer courses pay in one lump sum. I hadn’t paid our utility bills for months. When my regular paycheck deposited on the first, I didn’t have enough to pay two apartments, as usual. We were overdrawn and utility bills hadn’t been paid in months. After I bought food, restocking the fridge, I was just under the amount needed to pay one apartment. So why starve for two weeks? Why not pay outstanding utilities and Jani and Bodhi’s stored cord blood and car insurance and cell phone? So I did. I made the decision to go late on both apartments, knowing I would get paid for the winter class on the 15th, enough to cover the rent in both apartments plus late fees and probably legal fees. Every time we came home I rushed to door to try and get any potential legal eviction notice before Jani saw it.
But it never came.
But when I checked the bank today, there was no money. I can’t pay rent in either apartment. Even if we make it to March, they will only accept both the late February rent AND the March rent, for a total of approximately 3300 per apartment. What was 1300 per month will, combined with a second month’s rent and legal fees, balloon to over three grand. That’s six grand total.
On the first of March I will get about 1200 after taxes, social security, and health insurance. On March 15th, I will get about 3000. But March 15th is too late. Even if we avoid eviction until then because the LA County courts are so slow, by then we will owe about 8000 for the two apartments, apartments that should cost 1300 each.
I can cover 4200 of that. If we don’t eat.
In March our lease also expires. I would be shocked if they often to renew us. We have been great tenants in every way except we don’t pay the rent.
Like I said, the eviction notice hasn’t come yet. I don’t know why. Act of God?
So I need four thousand dollars. From you. Each of my blogs averages over four thousand readers. If each reader could donate anywhere from two dollars to ten dollars we would be fine.
I won’t hold my breathe, though. Don’t worry, I won’t hold it against you, either. All of you have done so much for us. If this is where it ends, then this is where it ends.
(By the way, I am trying to finish the book so I can get the next part of the advance, which I only get once Random House accepts a FINAL draft for publication). That is the only thing that keeps me going.
And the last thing is how I offended my friend.
The only time that Susan and I get to spend together is when we do Bipolar Nation Radio on www.latalkradio.com (we don’t get paid for this, by the way). In order to do the show, we must leave Jani with one friend and Bodhi with an intern.
For two hours.
The reason why the show matters is not so much for the time Susan and I get to spend together. It is because that is how we publicize what is happening to other families with mentally ill children. We try to give them a voice. It gives us a sense of accomplishment, making us feel like we are making a difference. Not all shows are mental illness shows but most now are.
But everyone abandons us in the end.
My paranoia tempts me to think it is a conspiracy, but that is my mental illness. In truth it is just life getting in the way.
The college interns we had a year ago moved on. The professor who had first suggested it killed it when we tried to expand it to other families with mentally ill children. But mostly it was because all of us failed to realize something. Students take vacations. We don’t. We can’t. Our job, the job of a special needs child or children, is 24 hours a day, seven days a week. There is no Valentine’s Day. I honestly don’t remember the last time Susan and I were intimate, a common refrain from parents of mentally ill or autistic kids who are still together.
When the students took a break, it was like we were being abandoned. Of course we realistically knew they couldn’t do what we could do, but eventually they couldn’t even do the Sundays anymore. For those without a mentally ill or autistic child, this life wears you down. Eventually you are going to want to find a way out. I can understand that. I did.
The last thing the professor ever said to me was, “The interns were all very excited about working with Jani, but more and more of them are increasingly leaving feeling disillusioned.”
She apparently forgot that soldiers in combat usually leave feeling disillusioned as well.
Welcome to American mental health. There are no quick fixes.
All we asked for was Sundays and eventually they couldn’t even do that. So many people have sworn to us that they will always be there for us. Six weeks later, they start making excuses why they can’t.
It’s not intentional on their part. Life gets in the way. Taking care of Jani, even for a few hours, dominates your life. Eventually you want that life back.
And we are left alone again. And every time it happens, I lash out. I try not to, but my bitter disappointment creeps out, no matter if their reason is that a relative is dying or they are sick. I know these things are true. I know I should sympathize. But what they don’t realize is we have no backup plan. There is no one else to help us.
They abandon us not because they are bad people but because we never let them have a break. Because we have no one else.
It is hard to explain that. So when I said in my Facebook status that people “are always flaking out on us” our friend got offended, reminding me that she had taken Jani every Sunday for the past four months.
She’s right. She has. But four months is, sadly, not enough, because this will never end. I wish I could have a number of people so the burden never fell to just one. But we never can find more than one.
I want our friend to understand I didn’t say what I said as an attack. I said it out of desperation.
Because once she is gone (and she is probably gone), it is just me and Susan again, ripping each other to shreds as we circle around Jani and Bodhi, constantly trying to keep them safe.
I have many friends on Facebook. And they save my life on nights like this.
But we got no one in the real world.
Update: 2/17/11 01:27am
Well, the notices that we were being sued for eviction arrived today. Thankfully both were placed outside Bodhi’s apartment which I am grateful for. Still panicking but getter better. Since this blog was published you all have graciously donated $1000 in 24 hours, which leaves $3000 to go (or as close as we can get) (normally the rent on both apartments together would be $2600 but the legal fees charged by the complex are now $500 per apartment and rising. In the interests of transparency, I will keep updating as/if money comes in, and what happens. Right now I have to respond to the court filing by this Saturday. Tomorrow I will have to go the local courthouse and find out how to file a response.
Donations are now up to $1600 total. We are getting closer to be able to pay at least one apartment. However, due to the amount of time it takes Paypal to transfer funds to our account we will probably still have to go to court. Hopefully I can get a stay. I appreciate all of your generosity. I would say that if the day ever comes when I can pay you back, I will be, but you would probably take that as an empty promise, but it isn’t quite. Paypal keeps a record of all donations so my hope is that one day I will be in a position to go back through them all, one at a time, and refund all the money.
So as of tonight we need about $400 more to pay rent and legal fees on one apartment. Realistically, I know we probably won’t be able to get another two grand to pay the other one.But I am truly touched and honored that we have almost made it halfway, and I’ve only had 1100 readers so far.
I also know this is probably the last time I will be able to do this. Even without the criticisms I get every time I ask for money, we can’t keep this up. Something will have to change. I don’t know what yet. That is for another blog.
Donations are slowing to a trickle. In the last 24 hours, we have raised another $160, bringing the total to $1760, still not enough to cover one apartment (rent and legal fees are $1950 for both). Got the legal summons from LA County Superior Court today and I am working with Legal Aid, but that only delays the inevitable. Don’t think we are going to make it this time. We have friends who have friends in real estate looking for us. My only stipulation is that we have to stay the Santa Clarita school area (because I am not sure any other school district would be as good as they have been about giving Jani what she needs-so moving to a real cheaper area is out of the question). We have to stay in the area, which is an expensive area. The other stipulation is they have to take pets. Jani will not be able to give up her pets and neither can we. We didn’t give up Jani and we are not giving up our pets. She needs them. So we shall see what can be found. I am sad because the two apartments was a brilliant idea that kept our family together rather than send Jani to a residential hell hole. It worked, but it is over. However, if any of you think we will send Jani to residential just because we can’t do the two apartments anymore you don’t know us. I’d rather be on the streets as a complete family than financially secure with one child gone.