On the 19th, we raised enough to pay the rent on Jani’s apartment, plus $585 in legal fees. We paid it one day before we would have had to go to court for the eviction hearing.
We paid the rent and legal fees that morning. In the afternoon, we turned in the “30 Day Intent to Vacate” notices for both apartments.
Once again, we are going to try to move back together into one apartment. Since our leases don’t expire until next May, our only option is to move to a two bedroom in the same complex we currently live in. We tried to do this before, back in February. It didn’t work because of Jani. Once we told her we were moving, she seemed fine, but her white blood cell count shot up (she gets weekly blood tests to monitor the clozapine). The risk with clozapine is decreasing WBC, not increasing. It got so high I was terrified she had cancer. She underwent a battery of tests but no physical cause could be determined for the rise in her white blood cell count. No infection could be located.
Then my credit got turned down (we have to reapply even though we have lived here for seven years). I could have gotten a guarantor, which would eliminate the need for my credit, but I didn’t. I let it go. Once Jani found out we weren’t moving, her WBC immediately dropped to normal levels.
The only conclusion the doctors can make is it was caused by stress. Stress can increase white blood cell count.
I don’t see any other option. I can’t depend on the kindness of strangers and friends forever. So our plan this time is to not tell Jani we are moving. Just do it. If all goes according to plan, she will go out with Susan on the morning of October 18th and come back to a new apartment. It is not change so much that she cannot deal with. It is the anticipation on change. We have learned the worst thing we can do is give her time to think about a future event because with a thought disorder (which schizophrenia is), time to think can be dangerous. Time to think is time to worry, to fear, to become terrified of things. So we feel the best option is to not tell her. She will deal with it better if it just happens before she has time to get nervous about it.
She is not violent with Bodhi anymore, so I don’t worry about that. I worry a bit because she still likes to leave to go to her apartment in the evening. She still wants her breaks from Bodhi. I hope she will be okay when that doesn’t happen.
It will be a two bedroom. Jani will have one room and Bodhi will have the other. Like we do now, Susan and I will alternate nights in each child’s room to try and minimize the impact.
I don’t want to wax poetic just yet as this is not a done deal. Not surprisingly, I need your help. Our move out date is October 18th, which means we pay pro-rated rent on the current two apartments until October. That works out to be about $780 each. I make $1000 a month teaching two classes (after SS and my benefits contribution are taken out), so that means I need $560 just to make the rent on the two apartments we are leaving. Then the new two bedroom is at least $1770 a month (possibly higher because we will have to give back our monthly discount “concession” from market rent). Prorate this for 13 days and you get about $742 and change. Then add $800 security deposit.
So to complete the move, we need about $2100 by October 15th. It’s a lot, I know, but if we don’t manage to raise it I don’t know what we will do. I am tired of nearly being evicted every month. I still won’t make enough to pay the rent on the two bedroom apartment but at least I will be a hell of a lot closer. I will also only be paying for one of everything instead of two like I have to now. If the move can be completed, it will save about $1000 a month in rent and utilities (currently we pay two sets of utilities).
We’ll see what happens.
If we make it, then I will be able to reflect back on two and half years of living apart. What I will say now is that your help supporting us in the two apartments achieved its goal. When Susan conceived of this idea of two apartments back in April 2009, we had two goals: To keep Jani with us and to allow Bodhi to grow up not fearing his sister.
Both of those goals have been achieved. Jani is still with us and Bodhi loves his big sister.
No matter what happens, I want to thank you from the bottom of my heart for that. You kept my family whole. That is a debt I will owe forever, but owe gladly.
My deepest thanks,
9/28/11 Update: I didn’t realize the end of the month was coming upon us so quickly. I don’t need the entire $2100 until about the 15th of October but I have to have enough (about $600) to pay the pro-rated rent on our current two apartments by October 3rd. If we go delinquent again, the complex will not allow us to proceed with the move and all this will be for nothing. We must remain current in order to move. I’ll keep you updated.
9/30/11 Update: Not feeling terribly confident right now. Still haven’t raised enough to make the total rent on the current two apartments through October 18th, let alone rent and deposit on the new apartment. If it looks like it is not going to happen, I will see about revoking the “30 Day intent to Vacate” by the 18th and seeing about November 1st. Of course, then we need the money to stay in the two apartments another month. I know you are trying. Just not sure it is going to happen.
10/2/11 Update: It’s not going to happen. Although we got a few donations, not enough to cover rent for existing apartments, Jani’s and Bodhi’s, for October until the “move out date,” let alone the deposit and pro-rated rent on a new two bedroom apartment we can all live in. Now once again the struggle will be to avoid eviction from either of the two apartments. Yes, I know a few of you have offered far more than you should, but I can’t let you go broke for our benefit.
Susan and Jani were woken up by the process server with an eviction notice this morning. Not sure why since we already had the eviction notice. Now we have to pay both September AND October rent (total, including legal fees: $3300). Just to get caught up. Doesn’t include what we will need to get into a a single apartment.
We have about $1500 in donations so far, which I appreciate. It just seems the target keeps moving further away.
Jani wanted mashed potatoes for dinner tonight so we stopped into the local grocery store. As I was scanning our items through the self-checkout, I happened to glance up and see Kate Gosselin and her eight children staring out from the cover of the current “People” magazine, with the line, Will Her Kids Be Okay? After six rocky years on TV, Kate and her Kids face an uncertain future. “I’m really scared,” says Kate.
Not being able to watch much TV or even follow what is going on in that world, I had no idea that TLC had finally cancelled “Kate Plus 8” due to falling ratings, with the last episode having aired this past Monday.
I was going to buy the magazine, but 3.99 exceeds my disposable income these days, so I sped-read the article in the line, easy to do despite Jani wanting to go because “People” is hardly in-depth journalism. The article was only three pages long.
So the show is over after six years and 150 episodes (not counting the specials that aired on “Discovery Health” prior to “Jon & Kate Plus 8” being picked up to series by TLC). The six years was the first thing that struck me. Six years ago, Jani was four years old. Looking back now, I can see that time as the warning of what was to come, but I had no idea at the time. Jani was isolating from her friends, kids she had known since infancy. She preferred her imaginary friends, whose numbers seem to grow by the day. She would scream if somebody other than Susan or myself called her by any variation of her real name. People tried to be accommodating to this but it was difficult because Jani would change her name every day, sometimes several times a day: “Hot Dog,” “Blue Eyed Tree Frog, “Seventy-Six.” Friends kept whispering in our ear that maybe she had Autism or Asperger’s, which we angrily rejected. “She’s just brilliant,” we insisted. Eventually, we got so sick of those whispers that we took her to get evaluated by an expert in Autism. She wasn’t autistic. She breezed through the Stanford-Binet V IQ test, scoring 146. We were told she had the mental capacity of a ten or eleven year old, which only reinforced our determination not to let her deteriorating social behavior define her. She was a genius and, like most geniuses, she was “eccentric.” My attitude was “Who cares if she is rude to other kids trying to be nice to her? She knows the function of blood in the human body at four!” Even when the violence began, my first thought was that this was teenage rebellion come early. If she had the mental capacity of a ten or eleven year old at four, I wondered if now at five she was really fourteen or fifteen, rebelling against a world that didn’t understand her.
I was never scared for myself. I was scared for her. I was scared that despite her genius, all the world seemed to care about was her behavior. I was scared she would be written off. She was Good Will Hunting, or so I thought. The angry genius, not the polite child prodigies you see on “20/20” who start college at eleven years old. All it took was somebody to reach her. That someone, by default because no one else was willing, was me. I followed her down, determined that she would have at least one person in her life who would never bat an eye at anything she did or said, even hitting me. I was terrified that if I didn’t she would stop trusting me and she already didn’t trust anybody else. I thought I was her last link to humanity, the last person who could show her that our dysfunctional race still had something to offer. In the process, I severed my contact to the rest of humanity, including Bodhi and Susan. As she slipped further into her psychosis, so did I. When you decide to go down the rabbit hole after a loved one who is mentally ill, it will cost you. But you don’t think about that at the time. You don’t even know it. Other human beings become nothing but a pack of cards you knock over in your pursuit of your loved one.
Only in the last few years, as Jani has begun to stabilize, have I become aware of the world again and I feel like I don’t quite fit anymore. I am either too large for the door or too small to reach the key on the table.
Back to my connection to Kate Gosselin. I didn’t really become aware of her and the show until we shot “Born Schizophrenic.” Shot by a production company as a special for Discovery Health’s “Psych Week” in May 2009, the producers had hoped the special might serve as something called a “backdoor pilot” to a series.
This is how Jon and Kate got started. Their original specials on Discovery Health, years before us, served as backdoor pilots to “Jon & Kate Plus 8.”
That is why, unlike our Oprah episode, unlike the 20/20 “Haywire” (I still hate that title), “Born Schizophrenic” ended on a hopeful note, which is why it is my personal favorite. The final shot of Jani and I riding scooters out of a local park was organic. The crew just happened to be filming and got that shot and that shot became the end of the show. Both symbolically and emotionally, it left the door open for either another special or a series.
We were not paid for our appearance on Oprah. Oprah doesn’t pay her guests, period. Travel expenses would have been paid had we gone to Chicago but Oprah, after meeting Jani at a friend’s house here in California, wisely realized it would be bad to try and get Jani to Chicago.
We were not paid for our appearance on 20/20, nor were the other two families that appeared. 20/20 is ABC News. ABC News is journalism. Journalists don’t pay for stories, and with good reason. It damages the journalistic integrity of the show and the subject.
We were paid for “Born Schizophrenic,” although since it was a documentary it was more of a “fee” for access. How much? About 15,000 grand.
This fee was paid to us once, so despite the fact that “Born Schizophrenic” re-aired over and over again on Discovery Health through out the rest of 2009, we received nothing more, nor were we expecting more.
In November, Discovery Health’s rights to “Born Schizophrenic” ended and it passed to TLC, which aired it once, the day before Thanksgiving 2009. Again, we weren’t paid. After that, the rights to the special returned to Discovery Health, which was now OWN, the Oprah Winfrey Network, which has aired it several times since (I have lost count), again without us receiving a dime. DVDs of the show are sold for educational purposes and we don’t get any of that, either.
Through all this time, the producers of “Born Schizophrenic” have been trying to generate interest in a series.
I had mixed feelings about that. I had no interest in fame. Even when we were shooting the special I was so focused on Jani that I wouldn’t come over to shoot my segments until I was satisfied that one of the crew (or quite often the executive producer and head of the company) was engaging Jani and I could relax enough to focus on what I was being asked. My stiffness on the Oprah Show had nothing to do with Oprah Winfrey. She was very nice and in another life I suppose I would have been star-struck. Instead, what you see is me worrying about how Jani is doing while we are filming (again, she was being entertained and engaged by the crew and producers).
Any series would have to work around us, tailing us while we tailed Jani, not the other way around.
But a series had its advantages. It would allow us to perhaps gather other families with mentally ill kids together, like we did in “Born Schizophrenic” (the producers flew in two other families from the online support group we set up). A series would allow us to build that community of families Susan and I have always wanted to do.
Because a series would pay for things we couldn’t. Kate never paid for those fancy vacations she and kids went on once the show became “Kate Plus 8.” The production company paid for that.
And the final appeal of a series was, of course, the money. A low five digit paycheck for each show.
The money appealed to me because it would secure Jani and Bodhi’s future.
Because one day I will be dead and gone. Before I am gone, I need to make sure that I can buy Jani and Bodhi a farmhouse somewhere on a lot of land where Jani can have her animals. I need to buy it outright and then establish a trust that will pay the property taxes and utilities forever. Beyond everything I want to do for other mentally ill kids, I want to make damn sure that Jani and Bodhi will never wind up homeless, that they will always have a home that no one can take away from them. Only when I know they will be okay can I go to my grave (if I can help it).
OWN, who has made I don’t know how many millions off advertising during airings of “Born Schizophrenic,” has, so far, refused to do a series. Their reason? They don’t want to “exploit” us during a difficult time.
The word “exploitation” brings me back to Kate Gosselin. TV by the Numbers has an article entitled “Kate Haters Rejoice! TLC Cancels ‘Kate Plus 8!’” She’s gotten kicked around quite a bit. I read some of the comments after that article and they are pretty vicious (kind of like some of the comments I get on this blog). Maybe “Dancing with the Stars” wasn’t such a hot idea, but the question is: “Have the Gosselin Kids been exploited?”
Before I answer that, let me ask you another question: How the hell would you pay for eight kids?
“Well, it was her choice to have eight kids,” you say.
Oh, I’m sorry. I didn’t know we were playing God now, deciding who has the right to exist and who doesn’t. Do you have the guts to say to her eight children that they shouldn’t exist or would you prefer to hide behind your anonymous internet soapbox?
They were born. They exist. Punishing Kate punishes them, you idiots.
The show gave these kids opportunities that Kate and Jon (before he decided he wanted a different life) could not have done on their own. The show allowed them to get a farmhouse on 24 acres. They got to get into the best private school. They got to see the wonders of the world.
Now Kate has to pay to keep the farmhouse and keep her kids in that school without the income of the show.
But more importantly that any of that, the show gave Kate time with her kids she never would have had if she were still working 12 hour shifts as a nurse (“Dancing with the Stars,” notwithstanding). I don’t agree with all her choices but I certainly don’t think she was wrong to do the show and I certainly don’t think she “exploited” her children. Their lives are better for the show. They have opportunities they would not have had without it.
And the fact that Jon burned out so much that he traded in 25K an episode for some babysitter goodies only shows how hard, how demanding it was. Maybe the show gave Jon a way to cheat and a way to leave, but maybe he would have done that anyway after seven years. Raising kids, regardless of number or level of need, is the hardest job you will ever do. Our fathers did it by not being around too much. I wonder how many of our fathers would be able to do what we do?
“Exploitation” is a bullshit claim, unless you are talking about kids working in Nike sweatshops sixteen hours a day for a nickel. That’s exploitation.
TLC gave the Gosselin kids the world. And now they’re taking it away from them because the ratings aren’t there. That’s exploitation. And OWN won’t help secure Jani and Bodhi’s future because they don’t want to “exploit” them? No, you’re right. It’s much better to keep making money off “Born Schizophrenic” and never give anything to the child who made you that money. That’s not exploitation at all.
But I’m not really complaining that a reality show never happened. We never did any of this for money and if we never make another cent (which is entirely possible) I will have no regrets. We got the message out there that child onset schizophrenia exists. It was the second part of the message that never got out there: that we AS A CULTURE, AS A SOCIETY, are going to have to deal with them and help them, and when I say “help” I don’t mean beat them to death with the butts of tasers like the Fullerton Police did to Kelly Thomas, a schizophrenic young man who had stopped taking his meds because he was over eighteen, sending him back into paranoia and fear. Your kids get pulled over for speeding. Mine might get murdered because they don’t see the world as the rest of us do and don’t know what to do when someone screams at them to “Stop.”
I suppose I am particularly bitter tonight because next to me is a lawsuit for eviction which was waiting outside Jani’s door tonight.
Yeah, not helping me keep a roof over my daughter’s head is definitely not “exploiting” us. I have been sick for weeks with a sinus infection that won’t go away despite two rounds of antibiotics. It spread to my ears (I am now deaf in my left ear) and now into my lungs. Part of my lung has collapsed. I didn’t know that when I dragged myself in to teach last Friday. The next day I was on an IV because I was so badly dehydrated because I sweat buckets even in air conditioned rooms after slight exertion.
The book. What happened with the book. Well, my most recent draft got rejected, which after I thought about it made sense. I wrote at night, all night, because that was the only time I could, for weeks, trying to make sense of a life that still doesn’t entirely make sense to me. Of course it was a mess. Unfortunately, my contract only stipulates two rewrites and then the publisher has the right to drop the book. They have not done this, but they have pushed the publication date back and encouraged me to get whatever help I can. Susan is working on it now, along with my agent. I can write powerful scenes but making the craziness in my head make sense on the page turned out to be beyond me.
We’ll see what happens. The problem was I really thought I would get the next part of my advance and I didn’t. That was how I was planning on surviving. And at minimum it is delayed for the foreseeable future. I may never get another cent out of them.
Now the wolf is beating down the door. I teach two classes but that is not enough. Our only hope is to get back into a single apartment. Moving into one of the two we have is not an option because they are both one bedrooms and the lease rules only allow a maximum of three people in a one bedroom. We signed a lease so we cannot leave to a cheaper apartment complex. Our only option is to get caught up on the rent on Jani’s apartment (and avoid eviction) and then apply for a two bedroom in the same complex. A two bedroom would still be more than I can afford but about a $1000 savings over what we have to pay now.
I need, Jani needs, $1400 to get current on the rent on her apartment. Actually, now that we’ve been sued, we will probably have to pay $500 in legal fees, so that’s $1900. Then we need the deposit and first month’s rent on the new apartment (rent $1700 or so plus $800 security deposit). Jesus. That is $4600. As much as I would like to hope, I seriously doubt we can raise that. Assuming we don’t by October 1st, the rent on Jani’s apartment doubles with the new month, adding another $1400, taking the total on her apartment to $3300, taking the total needed to get out of this hole and into a single two bedroom apartment $6800.
That would have been less than half the pay for an episode of a series.
Jani is stable, but that stability has has a price. That is what your donations have bought. Her stability. You’re not investing in me. You are investing in her. Hopefully, she will never have to know about this.
Because I have no idea how to explain it.
100×100] This is Jani’s favorite song at the moment.