This is my first real blog since “Watching the Wreckage.”
That was interesting.
First, if you are expecting me to apologize for it, you will be disappointed. I have no regrets. Some things did surprise me about it, though. One, it was my highest viewed blog entry. Ever. Two, I was surprised by how personal some readers took it. And I don’t mean the attacks on me. That didn’t surprise me. I expected some of that because I always get some of that. I long ago learned that not everyone is going to agree with me (to put it kindly), that some are always going to use what I say to push whatever agenda they have.
What surprised me were the reactions from long time readers who thought I was speaking directly to them. I am, after all, just a guy writing a blog and I don’t think it fully hit me until I wrote that particular blog that a relationship exists between some of you and the words I write, and since the words I write are essentially a representation of me at that given time, a relationship exists between you and me.
I didn’t realize that. I didn’t realize the impact this blog has, not because of what I say, but because of how some you interact with it like you are interacting with me. You argue with me, but you argue with me like you do with a family member or a close friend. Sometimes you love me. Sometimes you hate me. But you keep coming back. Perhaps it is because I acknowledge you in your comments.
Or maybe it is because you aren’t watching the wreckage. You are in it, too. Where-ever you are, your car has gone off the road too. You have hit a tree. You have crashed as well. And you are trapped inside, unable to get out. And you fear you will never get out. So you turn on the radio, flipping stations, looking for something that will give you comfort. And somewhere along the line you heard my voice, coming from my own car crash. And it gave you comfort to know you are not alone.
But I am a fraud.
Brief pause while my critics get all excited.
I am a fraud because I am a passenger, not the driver. I am in this wreckage because I refused to get out of the car, although I have thought about it many times.
I am reminded of how much of a fraud I am every time Jani talks about her hallucinations. Right now, as I write this, Jani is having a sleepover. One of her friends is staying with us.
This friend volunteers at the local animal shelter, working with the cats. On our way there today, Jani told us she would meet us there. As we headed, Jani ran up to her excitedly, saying “Hi!”
But I wasn’t looking.
“Daddy,” Jani called me, “Say hi!”
I looked over, hoping that Jani was pointing, hoping she would give me a fixed spot in space to look at.
“Say hello to 38 Hours,” Jani says to me like I am being rude.
“Hi, 38 Hours,” I called, trying to act like I could really see her there.
“She’s waving to you,” Jani says. She knows. Of course, she knows. She’s not stupid. She knows I can’t see 38 Hours. But she is still trying to communicate.
I pretend for as long as I can. I really do. I feed her hallucinations (literally). I give them their medication (because all the “humans” have various mental illnesses themselves). I go until I crack, until I can’t pretend anymore that the person Jani sees has the same care needs she does.
Jani reminds me of the interpreters who accompany my deaf students in class. I drone on and one, watching out of the corner of my eye as the interpreter translates what I am saying in ASL. Of course, I have no idea what the interpreter is really saying. ASL and English don’t always have exact word for word translations, and the interpreter is translating on the fly, trying to keep up with me. But what always sticks in my mind is the student’s eyes, locked on the interpreter, not me.
In real life, I am the deaf student. My eyes are locked on Jani because I cannot hear what the hallucinations say. I am deaf to them. But I know they are there, just like my deaf students know I am there even though they can never look at me for fear of missing something I say. I can’t look at them. So I watch Jani. Jani is my interpreter. She interprets what they say for me and in turn she translates what I say back to them.
American Sign Language (along with the myriad other sign languages) was developed to give the deaf a voice, to communicate their world to us. That is why we used to call them “Deaf and dumb,” dumb referring to the inability to speak rather than intelligence. Although in Deconstruction Theory, words simultaneously contain all possible meanings. I don’t know if Michel Foucult is right about this but certainly in the case of “dumb,” while the denotation is “inability to speak,” the connotation of “stupid” was also present. Clearly we recognized the offensiveness of the word or we would not have stopped using it.
The desire to communicate is powerful. It is a basic need. That is why I think Jani keeps translating for me even though she knows I can’t see and will never be able to see what she sees. She still needs to communicate.
Most of the time, I play along. Because I fear if I don’t one day she will stop trying to communicate and I will be left forever on the outside. If somebody is trying to communicate with you, you have to try and communicate back, even if you don’t know the language. It is how we acknowledge each other as human. Even if you have no clue what they are saying, you have to try and understand because they are trying to communicate with you. It is your duty as a human being. Otherwise who don’t speak our language become nothing more than pets, because we tend to ignore our pets until it is convenient for us.
That’s why I don’t try to tell her her hallucinations aren’t real, as has so often been asked of me. Because they are real to her. Me telling her they are not will not change her reality. And as long as she is willing to communicate to me, I have to be willing to try and understand.
But every so often I crack. After listening to her and talking back to them through her all day, after having to listen to their needs and desires all day, I break down and I yell. It usually happens when I also have Bodhi and am trying to meet his needs while Jani is hovering in my ear, telling me that 28 Hours or 24 Hours or 1901 or 80 needs something. When it just me, I can fake it. But when Bodhi is crying or hungry or needs a bath or wants me to read to him I can’t fucking take it anymore. I yell “Jani, 24 Hours isn’t real! Bodhi is real!”
Jani just stares at me like I have slapped her. Then she turns and goes away. She goes to hide under the mattress.
And I feel awful.
She was just trying to communicate her reality, which overlaps this reality, while I can only see this reality.
Later, I try to apologize. I explain what she already knows. I can’t see 24 Hours or 28 Hours.
And I tell her I wish I could.
Because I do.
I wish I wasn’t deaf and blind to what she hears and sees.
There is a whole world that Jani experiences that I never can, no matter how much I pretend.
That is why I am a fraud.
To those of you in trapped in your own car crashes, I am a fake. I pretend I can relate but I really can’t. And I never will be able to. All I will know is what you and Jani tell me.
And that kills me.
I get to be alone inside my own head. I have a space where no one else can ever enter.
You and Jani don’t. You are never alone. You have to share even your own mind.
No matter what anybody in the world says to me, I will go to bed safe in my own mind. You and Jani never can.
People sometimes call me “a hero,” as if my commitment to Jani given her illness somehow qualifies me for that title. The commitment is a given. I am no hero. I am just a father doing his job, which, by the way, includes me having to beg my readers for money to pay the rent. Some of you don’t like it. Too bad. Deal with it. Because I am not going to stop until I don’t have to do it anymore. Hopefully that day is coming soon because as soon as my publisher accepts a final draft of my book for publication and it goes to the copyeditor, the next quarter of my advance pays off. Since the book is scheduled for release next March, it needs to go to the copyeditor by the end of July at the latest (they need a nine month lead time to publish). I just turned in my second draft and am awaiting feedback. There will be a third draft and maybe even a fourth. Right now I am seven hundred short on rent for the second apartment for June. I will short on both in July. I will be short in August. So I am going to keep coming back here and asking for financial help until I get that next advance check.
Don’t want to read that? Don’t think I am “making the right decisions?” Stop reading.
What I need is money. What Jani needs is the chance to keep finding her way between this world and her world.
My hero is Jani and every other mentally ill person out there in my readership. You are my heroes because what you live with everyday is far tougher than anything I have ever done or will ever do. Somehow, you function despite the constant conflict between our reality and another reality. And both of them won’t ever leave you alone.
I don’t know how you do it. The rest of us “neurotypicals” would slit our throats. We are weak. You are strong, far stronger than we will ever be. You keep running up that hill, knowing that you will keep running up it for the rest of your life.
All I can do is promise I will run beside you, like I run beside Jani. I will never be able to know what you experience. But I will always be there next to you.
People have criticized me, saying I “chose this life,” referring to our constant money problems. Damn straight I chose it. And I have no regrets and I will never apologize. You don’t want to give me money? Fine. I will go on to the next person, and the next person, and the next person.
Maybe I am finally embracing who I am. Yes, I can be a jerk. But I will do whatever I have to do to keep my family and as many other families with mentally ill children afloat.
Some of you, those of you like Jani, have no choice but to keep running up that hill. It is either that or die, and I don’t want that because your lives have as much value as us neurotypicals.
I do have a choice.
And my choice is to keep running up that hill with Jani.
And with you.
PS: Strangely, I am having a harder time coming to terms with Bodhi’s autism than I did with Jani’s schizophrenia. Maybe it is because I knew something was wrong for years and kept searching for help while so many others refused to see what I saw until they couldn’t ignore it anymore. But I really wanted to believe Bodhi would “turn out okay.” Partially because I didn’t want him to suffer as Jani has suffered and partially to alleviate my own guilt at putting Jani first through his early years. Now I have to face it. There is no doubt he is autistic. Whatever else he has, if anything, remains to be seen, but he is definitely autistic. Jani had the language to communicate. He doesn’t, so I struggle more with him than I do with her. It is so much harder to penetrate his world. But I will run up that hill too.
Now I just have to learn another language.
You know, Jani understands his speech better than I do.
Maybe she will be his guide after all.