This is going to be short.
I don’t have much to say.
Jani is still struggling with the tactile hallucinations that she is having loose stool (diarrhea). She wants me to check her pants all the time. It is all I can do to keep her from pulling down her pants in public. She always wants me to touch her rear end to check. I tell her she doesn’t but she won’t accept that. Even when I touch her backside and say, “Nope, all dry,” she still doesn’t quite believe it. I see her reach back to check. She really can’t tell. Today, on the way to her equine therapy, she was afraid she would poop on the horse. I told her that the horse was far more likely to poop on her. I got a smile from her on that one.
It has given me a sense of how intense tactile hallucinations are. Her visual hallucinations are mostly harmless. We don’t deal with demons and “shadow men” and other horrors that I have heard from other schizophrenics. There is nothing worse that seeing a child scream in terror at something you can’t see. There is no experience that makes one feel so powerless than to be unable to comfort a child in fear. And you know what feeling powerless does? It makes you afraid. And fear leads to anger. You get short with your child, annoyed. Because you can’t fix it. That is your job as a parent. To protect your child. And you can’t do it.
And some of you wonder why I can get mean.
It gets hard to hold on to your humanity. As parent you are supposed to be strong. Unfortunately, the mind of a mentally ill child is stronger. It can create thoughts, feelings, and visions you can do nothing about.
There have been times when I dosed Jani with Benadryl to knock her out. Because at least she is out of her misery for awhile.
For some kids that doesn’t work. I have known many mentally ill children whose bodies fight off the Benadryl. By the way, we are not talking children’s Benadryl. We are talking the adult dose. 25 mg per pill.
Hospitals use Benadryl as a standard PRN because unlike anti-psychotics, it is essentially harmless. Actually, thorazine was accidentally discovered by a French lab looking for a new anti-histamine. It is better to drug into sedation then let someone suffer. I am sure a few of you are gasping at that and adding it to your list of “Reasons Michael Schofield is Evil” but I stand by it. Watch a child suffer scratch themselves until they bleed because they feel “itchy.” Watch a child pull out his teeth because “it makes my mouth feel better.” Watch a child cut himself with a knife and write on the walls in his own blood. And then ask yourself how long you could take that before you will do whatever it takes to put them to sleep, to give him a moment of peace.
That is why those of you who don’t believe in child mental illness or in mental illness at all sicken me. Because what I described fucking happens every day. Come over to the Jani Foundation page at www.facebook.com/janifoundation and listen to the stories. Actually, don’t. Because I don’t want you bothering the desperate parents over there. You will never believe it until you see it. Oh, I know. Somebody once “labeled” you something you disagreed with. You got hospitalized against your will. You got pills shoved down your throat. They made you feel like a zombie. And now you have an axe to grind with the world that did that to you.
Okay, I can understand that. You’re pissed off and now you think all psychiatry is quackery and lies. Can I give you some advice? Let it go. You know why? Because you are okay. You aren’t hurting herself. You aren’t cutting yourself or pulling out your own teeth. So you were a little “weird,” a little “eccentric,” so you think, and somebody put you in the loony bin for it. Consider yourself lucky that you are functional enough to post hateful comments to me. Consider yourself lucky that you have the luxury of believing the cure is worse than the disease.
Go on with your life now. Enjoy it.
And leave us to deal with the children for whom the disease will always be worse than the “cure.” We are parents. We don’t want our children to suffer. And we will do anything we have to do to prevent that from happening.
Bodhi is still a work in progress, a developing human. We still don’t know what is waiting inside his mind. Tonight I tried to build a train set with him. I would almost get it finished and then he would suddenly pick it up and throw it, a big smile on his face, like it was all a game.
He’s three. Maybe it’s nothing. Maybe not. No way to know right now. Verbally he is improving but he still lags far behind where Jani was at this age. But Jani was speaking in grammatically correct sentences at 18 months. I could have full conversations with her before she was two. So I don’t really know what “normal” is.
Damn. This was supposed to be quick. I need to get back to work on the third draft of my book because the faster I write, the closer I get (hopefully) to the next part of my advance. And then I won’t have to do what I am going to do now.
You knew it was coming.
I hate the end of every month because I know I can’t make rent, let alone any of the other bills. And then I hate the beginning of the month, watching the First become the Second become the Third become the Fourth, always checking the Paypal account, desperately hoping there will be enough there to make the rent, to keep the roofs over both children’s heads.
So, yes, I am asking for money again.
You don’t like it? That’s fine. You don’t need to say anything. You’ve said your piece. I heard you. Your comments are up there after all the other blogs I’ve written asking for money. My personal favorite is “I came here wanting to learn about life with mental illness.” That’s funny to me because what do you think this is? You think that chronic mental illness and never having enough money aren’t related? This IS life with mental illness, or an aspect of it. I’ve explained why time and time again but I guess I will do it again. BECAUSE NO ONE ELSE CAN TAKE CARE OF OUR CHILDREN AND KEEP THEM SAFE. THEY NEED 24 HOUR A DAY CARE. THAT MAKES IT HARD TO WORK. Because I am a college instructor, I am luckier than most in the sense that I can still work a little bit. But I can never be gone too long. Because all I ever think about is how Susan and Jani and Bodhi are doing while I’m gone.
Parents of children with chronic physical illnesses often can’t work either, for the same reason. Yet nobody begrudges them. It’s part of the double standard in our society that mental illness is still not treated as a “real” illness.
So this is life with a mentally ill child. It’s also life being a mentally ill adult, most of whom also need financial help to stay alive. This IS our life, people. If you aren’t comfortable with the constant financial need, then I suggest you fight for respite care, for individuals trained in psychosis who we would feel safe enough leaving our children with to go to work.
Your other option is to pack up the van and get out of town. ‘Cuz this is Schizophrenia Town. So many of you are fascinated until I stick my hand out. And then you get all flustered. I am the guy standing on the corner of the freeway off-ramp with a sign. You know that guy. You look away, pretend not to see him. You would never say the things to him that you say to me. But thanks to the anonymity of the net you don’t have to deal with the consequences of hurting someone.
Or having them come through your driver’s side window to get you J
You make your comments from a distance, safe in your own little world, far away from mine and every other family and mentally ill person on the Jani Foundation Facebook page.
Contrary to popular belief, I never “expect” people to donate. Every time I write one of these blogs, asking for money, I never know if this will be “it:” The time I don’t get enough donations to pay the rent. It hasn’t come yet, because of the generosity of many, but I know it could come at any time. This, however, could be the time. This might be the time when I have tapped out my generous readers for the last time. This might be the time when all my readers are so broke themselves (most are) that they are on the edge of the cliff themselves.
I never know. Every time I ask for money from you, it is indeed a total shot in the dark. I never know if this will finally be the month I run out of luck.
This month, I have that feeling very strongly that luck might have finally run out. I don’t know exactly why. You’ve pulled us from the jaws of eviction twice before. But I got a bad feeling this time. Maybe it is because two of our family’s most consistent benefactors, Carl and Dawn, are running low themselves. Maybe it is that everybody I know, and I mean EVERYBODY, is facing the abyss of financial oblivion as well. Or maybe it is just that all good things, even those that are noble and just, must eventually come to an end.
In every game, the clock runs out eventually.
Thanks to many of you, I have beat it for nearly two years. I have maintained the two apartments, which Jani needs now more than ever. But I always knew that there was a chance I would lose eventually.
Has the time finally come? I don’t know. If you don’t hear from me again for awhile (because the internet got shut off) you’ll have your answer.
So I thought this time I would take you through what will happen if this is it.
Don’t worry. It’s not going be a threat. No “gloom and doom.” Just reality. That’s what you came here for, right? Although I should warn a lot of my readers this is going to strike pretty close to home, no pun intended.
Rent is due on the July 1st. Our apartment complex, like most, offers a three day “grace period,” so the final day to pay rent without penalty (like the late fee) is July 3rd, a Sunday.
Thank God for Independence Day. That buys us an extra day because the leasing office will be closed.
So I will assume that rent won’t actually be “late” until July 5th, when they return. On this day, they will go over who hasn’t paid rent and write up what is called a “Three Day ‘Pay or Quit’” notice. Basically, it says we have three days to pay rent or vacate the premises. Normally we would only get one for one apartment but I am so deep in the hole it will be for both this time.
Maybe we will get lucky and they won’t post the “Three day pay or quit” notice until the 6th, but I doubt it. They are pretty efficient here.
But for the benefit of the doubt, let’s say I don’t have the rent by the 9th. Hmm. The 9th is a Saturday so that means they might send us to Riverstone’s legal department on Friday the 8th. The legal department will then begin the process of filing a lawsuit to have us evicted. They probably won’t start this until Monday the 11th so let’s assume we get the “Notice of Civil Filing” on Wednesday the 13th. Maybe we will get lucky and it will take until Friday the 15th. At this point I would normally have enough to pay rent on one apartment, combining my paycheck from CSUN (we are paid on a 12 month schedule) and unemployment, but now we will have to pay an extra 500 or 600 dollars in legal fees to get Riverstone legal to withdraw the lawsuit. Out of my league again.
Okay, by the 15th we will definitely have the notice of civil proceedings to be evicted in our hand. On that notice will be a hearing date. The civil courts here are humming along in North LA County so the hearing will be before the end of July, maybe the week of the 25th. I will go to this hearing. I will probably have to take Jani with me. In this hearing, I will explain our situation to the judge and ask for an extension. Hopefully I can get an extension to the beginning of August.
Right before Jani’s 9th birthday.
Of course, the Court isn’t just going to let us skate by not paying the rent. Eventually we will have to pay it or the Court will award for the plaintiff, in this case Riverstone Management.
If I am lucky, I can buy enough time to get into August.
During this entire time, I will be doing what I am doing now, doing the only shot I have at financial stability: finish the book and do it well enough that the publisher accepts it for production and pays off the second portion of my advance. That is my only shot. That is what I need to buy time to finish.
That is what you are buying if you can and are willing to help by donating to us.
So that’s the plan.
We’ll see how it works out.
Hopefully I will get to talk to you again soon.
If I don’t, I want to thank all of you who have kept us going these past two years. You kept my family together. That is a debt I can never repay.
Catch you on the flip side.