I am an asshole.
This is a fairly common assessment of me by readers of January First over on the book’s thread on Goodreads.com. They like the book. They are unable to stop reading it. They keep going to the end, sometimes in the hope that I will acknowledge I’m an asshole and seek some kind of redemption, although I am not sure what sort of redemption I am supposed to seek. It doesn’t really matter, though. I am not looking for redemption. I didn’t write the book to be liked.
No, it’s not that the fact that some readers of either the book, this blog, or our Facebook page think I’m an asshole that surprises me.
It’s that they thought I wouldn’t be. That is what surprises me the most. That they can read everything that happened in January First and expect me to come out of that “nice.”
Am I missing something here?
Now, full disclosure: I probably had moments of “assholeness” before. The time before Jani and her illness is a distant memory but I certainly wasn’t perfect. I think without Jani I probably never would have gotten on medication myself. To the people who speculate that I am mentally ill myself…well, duh! No, I was a perfectly rounded human being before Jani. No, I have always had a more minor mental illness, which when diagnosed goes by the term chronic depression or bipolar 2 (no manic state) but it is better known by it’s common term That guy is an asshole. In females, it is known as That woman is a crazy bitch!
I am honestly not criticizing my readers here. I don’t shy away from my reputation as an asshole. I am just genuinely wondering what they were expecting?
Since I didn’t have the chance for much self-reflection in the book (there is such a thing as contractual length), I am doing it now.
Well, right off the bat I can tell you part of the problem is that it is not over. Books have to end. Life does not. It’s hard to reflect on something when you are still in it. Reflection is a luxury that comes with being safe and sound. First you have to feel safe and sound. I don’t.
Yes, I probably could have waited to write the book until I had to narrate it from my death bed. Or, as some have suggested, at least wait until Jani was grown and could give her “blessing.”
I didn’t because that might have changed the ending… the most important aspect of the book and the one that is so easily lost.
The book ended with Jani alive.
She is still alive.
By writing it, I did not guarantee that she would stay that way but I took a meaningful step. I entered her into the canon of public consciousness. From now on, no matter what happens, she is part of the Library of Congress, the collective consciousness of the United States of America. I have increased the odds that when asshole me is dead and gone, there will be people who will remember her and help her.
Because Jani still clings to functioning by her fingertips. Those who expect Jani to one day be angry at me for “outing” her to the world may turn out to be right. But first Jani needs to learn to take a shower by herself.
You know, the little necessities of life that have to be taken care of before someone can sit and brood over their parents’ actions.
It seems like a little thing. Taking a shower. Most of you probably do it every morning without thinking about it. Why? Oh, sure, you’re afraid of somebody sniffing the air while you’re in an elevator and looking in your direction. Of course, that requires social awareness, being aware of the presence of other people around you and that you have to live and work side by side with them. Thank God for deodorant, Dentyne, breath mints, and Binaca. Stores are filled with ways to conceal the normal functioning of our body throughout the day.
If you are not socially aware of what other people think of you, how would you know that you needed to clean yourself?
But that’s not the only reason you take a shower. Think about the days when you don’t have to go out of your home. Let me ask you this. How long can you go without a shower, even when you don’t have to go out in public?
One day. Two days?
There is a limit, isn’t there? You know when it is. When you get up from lying down and your skin peels off the bedsheets like Velcro. When it feels like there is a layer of film on your skin. When you start to twitch from hating the feel of your own skin. When you can smell yourself.
How long can you go without brushing your teeth? Our dentist said that when he was in dental school, the students had to go one entire month without brushing their teeth, for the purpose of taking a sample of plaque off the teeth for culture. Can you imagine that? An entire month without brushing your teeth? How long does it take before your mouth feels like its lined with cotton?
In the end, it ain’t just social decorum that makes you take a shower or brush your teeth or wipe yourself after going to the bathroom. In the end, you can’t stand the way you feel if you don’t. You have to shower. You are compelled. The power of Irish Spring compels you.
But what if you don’t have that compulsion? What if you are disconnected from how your body feels so you never get that “skuzzy” feeling? Or “skeevy” as I think the kids say now, as in “Michael Schofield gives me this skeevy feeling like he is exploiting his daughter….” by wish I assume you are saying I give you a feeling like you need to take a shower. Good for you. Your brain is functioning relatively normally.
You know what happens if we tell Jani to take a shower?
She’ll turn on the water. And just stand there, looking blankly up at the shower head.
If I say “Wash your hair,” she will get the shampoo bottle, open it, pour some into her hand, and then slap in on her scalp.
She’s hasn’t gotten her hair wet yet.
Okay, start again.
“Jani, wet your hair.” This is followed by innumerable commands of “keep going” because initially she just turns around and moves back into the water stream enough to wet the tips at the end. If she were Bodhi with his short, straight hair, this would be sufficient, but you know Jani’s hair. Everybody loves Jani’s hair.
Next, it is “Get the shampoo.” She does, like I described before, and slaps it on her scalp.
“Massage it in,” I have to tell her, followed by more “keep going, keep going, keep going….”
“Now the conditioner…..Eighty got a cat?….Mix it into your hair….. Eighty’s cat’s name is Seventy-Five?….. Keep going, keep going, keep going….We have to take care of Seventy-Five?…. Keep going…Where is Eighty going?…..Eighty has to go to Bakersfield, I see….Keep going… Yes, I know, we have to take care of Seventy-Five…
I will take a thick brush and gently attempt to brush out the tangles. While I do this I talk a blue streak about whatever she thinks her hallucinations are doing because if she screams, if she thinks I am “doing it too hard!” she will take the brush from me and rip it through her curls, pulling out huge clumps of hair without a whimper, which frankly scares the shit out of me.
I get a washcloth and wet it, because she will not remember to wet it before I say “Wash your face.” “Washing her face” for her means washing her chin. I suppose I could say “Wash your mouth. Wash your cheeks. Wash your nose. Wash your forehead,” but time is a moving here and we still have a long way to go so I end up taking the washcloth and doing a quick onceover her face.
Next, I rub soap into the wash cloth and say “Take the wash cloth.” I won’t wash her body. I haven’t in years. First, it was because after the DCFS investigation for sexual abuse, I didn’t want to take the change. Now it’s because she is ten and a half years old and I shouldn’t even be in the fucking bathroom any more.
I have to repeat my command to take the wash cloth several times, either because she is talking about her hallucinations or because she is busy putting her hand up her bottom to make sure she isn’t having a bowel movement.
Finally, she takes it.
“Wash Amy the arm.” “Amy” is her left arm. The only way I could get her to wash herself was to name her body parts. All of them. “Now wash Annie the arm.”
“Now, Sally the shoulder… and Sharon the shoulder.”
“Ursula the underarm.” Now that she is on the verge of puberty I make her wash her underarms. It took me forever to think of another female name starting with “U.” “Now, Uma the underarm.”
“Now, Chelsea the chest….Becky the belly. Now, Lisa the leg. No, get all of Lisa. You have to do the inner thigh.” She pauses because she can’t remember what the inner thigh is. I try to point to it without touching it but she thinks I am pointing to the outer thigh of “Leslie the leg.” “No, inner thigh. Inner thigh. The inner thigh.” I don’t know how many times I say this. She is just draping the wash cloth over her legs but I figure the soap runs down so the calves will get clean anyway.
“Don’t forget about Gina and Tina.”
“Gina.” Short for “vagina.” And “Tina the tush.” She spends more time with the washcloth up her butt that anything else.
“Okay, now rinse off.” She drops the washcloth. I have to tell her to turn around several times until all the soap is off.
“Okay, you can turn off the shower.”
She does. Then she screams “I’M WET!!!” at the top of her lungs, as if she just realized. I hand her a towel. She spends several minutes with the towel up her bottom and then attempts to get dressed with the rest of her body still soaking wet.
“Remember how I taught you to dry your legs?” I ask. “Wrap the towel around each leg individually and then move down.”
Sometimes she does. Sometimes she continues to scream that she’s wet while drying her bottom to the humidity of the Sahara.
Sound creepy? Are you creeped out? Does that make you feel “skeevy?” Good. It’s supposed to.
By the way, it’s the same process for Susan and Jani’s ABA behaviorist, who comes on certain mornings exactly for this purpose.
So am I worried about what Jani is going to think and feel when she is twenty years old?
No, I am worried about Jani being able to THINK and FEEL at twenty years old.
I am worried about her being able to take care of her basic hygiene.
The loss of hygienic awareness is what is called a “negative symptom” of schizophrenia. The hallucinations and the aggression? Those are called “positive symptoms” and they are easier to treat, provided the person suffering from schizophrenia takes his/her medication. “Negative symptoms” are the things that most of have or take for granted but those with schizophrenia do not.
And both positive and negative symptoms can kill.
Because the negative symptom of lack of awareness of hygiene is the first step to homelessness (or the appearance of it, like the guy in New York City the nice cop bought a pair of sneakers for). And homelessness ends in one of two places: prison or death.
Our only hope is to try and lock the process of bathing, body part by body part, into Jani’s mind so it becomes a repeating loop for her.
I find the saying “Cleanliness is next to Godliness” depressing. It feels like it is putting the severely mentally ill further and further away from God’s Grace.
I have to worry about Jani being able to do the basic requirements of human survival. And you wonder why I’m asshole?
While you sit in judgment of how the future will look back on me, I am still trying to ensure Jani is a part of that future. Because in the end I am a mammalian parent. And I do what all mammalian parents do when they feel cornered: lash out. Lash out whether you deserve it or not. It gets to the point where you don’t trust anyone anymore. The parents of the severely mentally ill will die for our children. And we see nothing out there, in your society, that makes us feel anybody else will.
You imprison our children. You hit them with stun guns. You pass them on the street. You beat them to death.
Why in God’s name would we trust you?
Some of us are just better at hiding it than others. Because we know we need you. And we all know our anger turns you off. You are fine with our pain. You sympathize with that. But our anger? No, that makes you turn away.
But so many of you turn away anyway. You see a cute girl on TV. You “like” a Facebook page. Then you move on.
For most of you, the seed I, and the other parents like me, have tried to plant in your mind will not germinate.
But for a select few of you. It will. It will and it will grow despite the aspects of us that you don’t like.
I am sorry that I don’t trust you. It will take me a lifetime to trust society again. Not because you are bad people. Not even because you weren’t there. No book in the world can ever truly give you the experience of what loving a severely mentally ill child is like. No, I can’t trust you exactly because of that. You cannot feel what I feel. It’s not the life that I hate. There is no pity here. But there is pain.
But you can’t function in pain. You have to get angry or you can’t get out of bed in the morning. And if you can’t get out of bed in the morning, severely mentally ill children will die. Today might be the day that everything unravels. All your victories are temporary. All your failures feel permanent.
My greatest failure is not that I can’t make you understand. That is only a shadow of my true failure, which is that I can’t fully understand what Jani experiences. But perhaps if I could, I would be no use to her. I try to tell myself that.
So that brings us to a catch-22, doesn’t it? In order to insure the survival and happiness of Jani and the countless children like her, I can’t do it alone. I need you. But the very nature of this experience is lonely. I can’t make you feel it. And so I get angry. And that potentially drives you away.
I don’t know how to solve this. I cannot be someone I am not. Neither can you.
But maybe, just maybe, in the midst of my anger and your confusion, we can remember that there are children here we need to save.
And we can save them.
We all need to be saved. We all need redemption.
And when severe mental illness does not kill anymore, when it does not destroy lives, that will be our redemption.
NOTE: This could very well be the last blog published here. Jani’s Journey will be moving to www.janifoundation.org soon. The Jani Foundation was incorporated in the State of California on December 17th, 2012 (Bodhi’s birthday) and 5o1c3 status is pending.http://www.youtube.com/v/8-r-V0uK4u0?version=3&hl=en_US&rel=0