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The Road Not Taken (When You Were Young)

I was thinking about someone today.

 

A girl I knew in high school.

 

She crossed my mind as I was going to pick up Jani from school.

 

I don’t know why.

 

Oh, yes I do. I saw an Asian girl in the parking lot as I was leaving. That’s what it was. I commented to myself on her attractiveness. Which then lead me to the thought that I never dated an Asian girl.

 

Which lead me to think about one that I could have dated. She sat behind me in psychology class my senior year in high school. She kept forgetting her book which meant she had to scoot up and read over my shoulder. The significance of this didn’t hit me until years later.

 

When it did, I was twenty-five and married. When it did, my first thought was, “Man, why didn’t I pick up on her signals? I could’ve nailed an Asian chick.”

 

Piggish of me, I know, but I am including it because she will read this and I want her to know who I am really am.

 

You know the famous poem by Robert Frost, “The Road Not Taken?” Have you ever actually read it? The popular interpretation is that the poem is an ode to non-conformity, to blazing your own trail, because of the final lines “Two roads diverged in the wood, and I- I took the one less traveled by, and that has made all the difference.”

 

Except that doesn’t fit with who Robert Frost was. He was no Walt Whitman. Frost’s family was riddled with mental illness. In 1920, Frost had to commit his younger sister Jeannie to a mental hospital. In 1940, Frost’s second son, Carol, committed suicide (his first son, Eliot, had died of cholera at eight years old). In 1947, he had to commit his second daughter, to a mental hospital. Both Frost himself, his wife, and his mother all suffered from bouts of extreme depression.

 

Not a happy life. Which makes it hard to buy that “The Road Not Taken” is a celebration.

 

Years later, in 2009, when I got on Facebook, I found her again, that girl who sat behind me in psychology class. And my suspicions were confirmed. She had indeed liked me. And she still did, even though she too was now married.

 

She told me some of the details of her life since our roads diverged in June of 1994 when we graduated. I won’t share them here but suffice to say they took me back. Things happened to her that I never would have expected. Not her. Not the sweet girl who sat behind me who wore knitted sweaters over a turtleneck every day (It was Minnesota).

 

She never said anything to this effect, but I felt that the downward spiral began with our roads diverging.

 

Every time I think about her now, I worry about her. And so I did when I thought of her today, on the way to get Jani.

 

And I thought about what might have been.

 

“Two roads diverged in a yellow wood,

And sorry I could not travel both

And be one traveler, long I stood

And looked down one as far as I could

To where it bent in the undergrowth;”

 

A few days ago, I woke up when my alarm went off at 7AM. I was sleeping on the couch in Jani’s apartment. I do this now, having learned to sleep with the incessant trickle of the filters in the turtle tanks, to increase my chances of “catching” Jani. If I am sleeping in her bed, having gone to bed at 3am after working on the book, there is too much of a chance she will get up and slip out while I slumber. Out on the couch, she has to go past me.

 

On this morning, I woke up to find the living room tv off. My first thought was she must still be asleep, which surprised me greatly. Normally I wake up to find her watching television in front of me. I go into her room, expecting her to still be in her bed.

 

But her bed is empty.

 

I look to my right. The bathroom light is off.

 

“Jani?”

 

No answer. No need to panic. She often doesn’t answer me the first time. I think I have to cut through the noise in her head, like diving into the pool that is her psychosis, dulled, but always active.

 

“Jani?” I call louder. No answer. I run back into the living room, wondering if somehow, in my half-awake state, I missed her. No. I spot the door to the balcony. I open it, calling to her again.

 

But she is not there.

 

I go back into her bedroom and pull up the sheets, the covers, the piles of clothes, even though I know she isn’t there.

 

It is 7AM and Jani is gone.

 

My only hope is that she went over to Bodhi’s. I call Susan. It rings for a long time, making me fear she and Bodhi are still asleep. If so, then Jani is not there.

 

Finally, Susan answers the phone.

 

“Is Jani there?” I blurt

 

Susan doesn’t answer immediately, like she wants me to swing in the wind on the end of my rope a little longer before cutting me down. I get the sense she is angry with me. Okay, I can understand why. I failed in my guard duty.

 

“Yes, she’s here,” she finally answers. Her voice is a mix of resignation and disgust.

 

“I set the alarm!” I protest. “I set it for seven!”

 

“Did you hit her?”

 

Am I dreaming? Am I still asleep and this is a nightmare?

 

“What?”

 

“She says you hit her.”

 

This doesn’t feel like a nightmare. There is something too logical here. People don’t ask me questions in my nightmares.

 

“When? How? I was asleep!”

 

“She says she tried to wake you and you hit her. She came over here crying.”

 

Suddenly, I get one of the worst feelings I have ever had in my life, the feeling where I wonder if I what I remember is really true. I begin to wonder if there are gaps in my memory, things I did that I don’t remember. It occurs to me that this must be what it feels like to be psychotic.

 

Did I do it? I don’t remember it. Could I have lashed out unconsciously when she was trying to wake me?

 

But that doesn’t sound like me. I don’t move like that.

 

“She says you spanked her.” Susan continues. “I asked ‘over the clothes or under the clothes.’ She said over.’”

 

Reality begins to arrange itself. I am sure I didn’t do that. I would remember that.

 

“I just woke up,” I tell Susan.

 

But reality is arranging itself into something that is no better.

 

“Oh, shit.”

 

“Well, when I opened the door, the first thing she said was, ‘I need my meds.’” Susan is reading my mind.

 

“She’s psychotic.”

 

Jani has almost made it six months out of the hospital.

 

But it is getting harder. We are running faster on the treadmill. I took this morning “off” and Susan reported back that Jani was talking a lot about “Eighty” and her jumping off buildings.

 

So I went back out into the world with Jani. When I am out with Jani, it is exhausting, not only because she never stops and can never stay in one place for very long. It is because to keep her with me I have to talk to her about her “imaginary friends.” I continually have to talk to her about people and numbers and animals, trying to reconcile their actions with our reality. I have to remember who they are, when their birthdays are, what they are doing, who their siblings are, what problems they have. I have to recall an entire world that doesn’t fucking exist except inside her head.

 

Here in California, it is illegal to use a hand-held cell phone while driving. But what I do is far more distracting to me. Try having to navigate traffic while talking to someone about people and things that don’t exist and having to act like they do.

 

It is so hard to remember. Sometimes I want to scream at her “They aren’t real!” But I can’t do that. Because they are real to her. She is so earnest. In the end I am her last link to our world. I won’t break it.

 

“Then took the other, as just as fair,

And having perhaps the better claim,

Because it was grassy and wanted wear;

Though as for that the passing there

Had worn them really about the same,”

 

So I suppose, as I was driving to pick Jani up, in those few moments I have to myself, I was thinking about what might have been. What if I had turned around to that girl behind me? What if I had asked her out? What if today I was married to her and not Susan?

 

What if I had taken the other road?

 

“And both that morning equally lay
In leaves no step had trodden black.
Oh, I kept the first for another day!
Yet knowing how way leads on to way,
I doubted if I should ever come back.”

 

You only come to the fork in the road once and you can only take one path.

 

“I shall be telling this with a sigh

Somewhere ages and ages hence:”

 

Why? Because he chose the wrong path?

 

So what if? What if I had turned around back in psychology class at Hopkins High School in the winter of ‘93/’94?

 

Well, first of all, I was eighteen. I didn’t know who I wanted as a person. You only learn that later by trial by fire. You burn, and you find out if you can burn together.

 

So at eighteen all I knew is I wanted to get laid. So I probably would have talked her into bed, eventually dumped her, and left a scar like the ones she already has.

 

That is why I included the earlier “piggish” statement. I want her to know that the only thing she missed out on with me was more pain. I would have been like every other guy.

 

But let’s say I didn’t. Let’s say I asked her out, we dated, and I fulfilled her fantasy. We got married and had kids.

 

No matter what road I chose, I still carry the same DNA in my sperm. I produced a child with schizophrenia and another that likely is autistic.

 

If I had children with another woman, am I to suppose that magically those sequences in my DNA would not have been passed on to those children?

 

Jani and Bodhi would look different. They would probably have different names. But they would still be Jani and Bodhi. They would still be my children.

 

And that girl who sat behind me, who is now a woman, suffers from depression as well, just like Susan.

 

“Two roads diverged in a wood, and I—

I took the one less traveled by,

And that has made all the difference.”

 

Do you get it now? The key is “And that has made all the difference.”

 

But the narrator never explains what the difference was.

 

Because there was no difference.

 

It doesn’t matter what road he chose. He would still end up in the same place.

 

I love Susan. I love her more now than I did when we were married. We have burned together. And we will burn together forever, united in the fire that is Jani and Bodhi.

 

But even if I had taken the other road, even if I had turned around in psychology class, I will still be here today.

 

“The Road Not Taken” is meant to be ironic because in the end, it doesn’t matter what road you choose. The only “difference” between the road you are on now and the one you didn’t choose is you didn’t choose the other road. The roads are the same. Frost even describes them as being largely the same.

 

There is no difference.

 

It doesn’t matter what road you choose.

 

You will end up in the same place.

 

And that has made all the difference.

 

 

Note: So rent is coming due again and I don’t have it. The electric bill hasn’t been paid in months. Neither has the gas bills. Neither has the car registration. But you know all of that already. If you can help, thank you. If you can’t, thank you as well. Hopefully my next blog won’t be about getting another eviction notice. But if that happens, it happens. Because I guess then it is meant to happen.

 

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19 comments on “The Road Not Taken (When You Were Young)

  1. Your genuineness is so refreshing. For you to write about true human thoughts and emotions, instead of attempting to paint yourself as a saint attests to your remarkable character.

    Jani has made it almost 6 months out of the hospital in spite of all the chaos that swirled around her with the possible move. She is getting so much stronger.

    Keep going. You can make it.

    Note from Michael: Thank you, but I worry that the chaos will return if I can’t pay the rent and we face eviction yet again. And right now it is looking like we are not going to make it. People just don’t have the money to donate, I guess. I certainly understand that. Recession over, my ass.

  2. Sliding Door
    Michael, how are you so sure that it was your genes that passed on schizophrenia to Jani? Seems like a huge cross to bear, unnecessarily. Jani is a “no fault” child just as Bodhi is. We all are. Life and genes are like a box of chocolates, you never know what you’re gonna get (till you get it) On the topic of choices and outcomes: Did you ever see the movie, “Sliding Door”? Gwyneth Paltrow stars. If you haven’t, you might find it interesting. It shows that just slightest thing can change the course of your life, like being late for a train. If you had married the lovely asian woman, Jani and Bodhi would not even exist at all. 😉

    Note from Michael: Obviously, I think any parent feels some shred of guilt. I don’t beat myself up about it but, yes, there is some guilt.

  3. I debated on reading your blog as I always do only because this time I felt it would be emotional considering my current state of mind. The Road Less Traveled is a term I use quite frequently. When I was reading it……….I felt you! I understood you! My emotions were right there with you! We don’t have a dx of sz but she sounds just like Jani. I can’t ever have a normal conversation with her. It’s always about Cameron. Cameron is a little boy in her Kindergarten class so he is real but she talks about him as if he lives with us. If somebody tells her something or ask her a question then the answer is typically going to include Cameron. She talks about spiders being in our pool. Yesterday morning really made me think of about the future and the past. We were getting ready to go to school and she said,”No ‘posed bring guns school?” I said,”No!” She said,”Cameron bring his gun school!” Then she said,”I get mad Cameron I shoot him!” This is not typical talk and it’s very scary! She’s always in her own world and I’m always in it with her. It’s exhausting and sometimes I just need to get the hell out of it and not think about it but I don’t have that option! WE don’t have that option! This is our life!

    Note from Michael: Yep. Sorry I don’t have something more profound to say than that. It’s all I can say. Yep, this is our lives.

  4. Michael,

    This has always been my most favorite poem I have ever read.

    I also ponder my path in life, especially when it comes to our children. What if we had stopped with just one? With just two? With just three? As all of our children are adopted, I find myself in a perpetual spin cycle from hell asking “Why did we say yes when we got the phone call about Logan?” What if we had said no as we were still mourning the loss of a failed adoption just a month before? What if we had selfishly held onto our broken hearts longer and had passed? What if, what if, what if?

    I concur with your conclusion that Mr. Frost had to make a choice without knowing where either path would lead. However, I believe that the “difference” does not conclude the same for each choice. “As ways lead to ways” he knew he would not be able to return to discover what lay at the end of the unchosen path. He may also have known that he would not be the same upon returning to the fork in the road. Life would carry on and he would travel on, regardless of the direction his feet took. He would end up where he would end up – and the details of the journey would only reveal themselves as he walked along.

    In order to embrace the conclusion that you would end up in the same place, I feel that we must look at the destination, the end of life, and not the journey itself. Yes, we all end up at the same end. At the end we all will ponder the choices we made as the circle of life folds us all equally into another unknown as we collectively realize that we leave with exactly what we had when arrived. Our experiences, however, will be vastly different.

    How do Jani and Logan fall into this map?

    They are our companions for the journey who stood just around the bend. And that has made all the difference.

    Travel well today, my friend.

    Amy
    Logan’s Mommy

  5. my son
    my son is on clozaril.. and has to take an Antihistamine to stop him feeling dizzy and nauseous..which leads him to almost fainting.. was wondering if jani took some also

    Note from Michael: Jani does take Clozaril but doesn’t have that issue. But every child will react differently. What concerns me is that clozaril can cause sudden drops in blood pressure in SOME people. Does it happen when you son stands up suddenly after having sat for awhile?

  6. I wish I could help more :(, not just for your family, but for all of the parents on your facebook page who are having a rough time right now. I also wish all of the ridiculous amounts of money currently being poured into the fricking royal wedding could be more evenly distributed.

    Note from Michael: Yeah, but I can’t get too angry at the Brits. They still provide cradle to grave health care coverage for every citizen, which we don’t. And they invented “Dr. Who.”

  7. Hi, Michael.
    One good thing in all this is she’s asking for meds when she feels the psychosis coming on. That means when she is at least half way lucid she knows Calalini isn’t “real” — at least in the material, empirical sense that the neurotypical population clings to. It’s a very good sign for her future as a functional adult in that population, for better or worse. As much as I love that you play things out with her, talk to all of her people and creatures and respect them, and wish someone had ever done that for me… I don’t think you need to worry as much, especially as she’s getting older, about losing your special connection with her if you eventually have some clear discussion about her understanding of “reality.” You wouldn’t do so in a way like my parents or my husband with the whole “shape up or ship out,” tough love attitude. I would see you just calmly explaining which people are safe to share this with, which aren’t, how to divide time between the worlds… carefully… and release stress when needed. It is your call as always. Just something to consider.

    Note from Michael: Interestingly enough, I had to do that tonight, calmly explaining that Thousand Island dressing is not made out “One Thousands.” I would have let it go but Jani was talking about me “cutting open” a “1000” to make the dressing. So had to tell her Thousand Island is mayo and ketchup with pickles. I don’t know if she accepted this.

  8. So i guess it didn’t work out…
    So i guess the whole show thing didn’t work out…?… thats a bummer… i waz really looking forward to watching that… :-(… i guess i will just have to wait until u make another documentary… huh?… well… What do you think will happen to Jani if she keeps taking such high dosages of medications?.. and also, What if as she gets older… she will need higher dosages?…
    sry!!! random questions!!
    bye!!

    Note from Michael: Should I even bother to respond to this? Nah. Not worth it.

  9. Jani’s Visions
    I’m hoping your book will include some kind of index of Jani’s visions. Each vision seems unique and to have its own characteristics. For example, I was unaware that some of them act in a predatory manner. Jani seems to have created (for want of a better description), her own almost magical zoology. Her ideas about 1000 show a wonderful creativity. Her ideas, while not corresponding to reality, show a certain internal logic.

    Note from Michael: Hallucinations usually do. People who don’t have hallucinations don’t realize how elaborately constructed they are. The delusional world has its own logic and its own rules. It functions just like ours. It just isn’t ours.

  10. I love Robert Frost (one of my most treasured possessions is a signed copy of one of his books), and I have always gotten a similar feeling from that poem – that, it is not one of celebration; but, more an introspective mourning. My 8h grade English teacher was a huge fan of the poem, claiming that he felt it altered the course of his life – in a positive way, using the celebratory interpretation – and we had this debate numerous times. Frost was not a man of joy and celebration; his life, and his other works, were those of thought, and reality as it is. He used metaphors, yes; but he was neither hopeful, nor hopeless in them. He simple presented life the way it was, is and will always be. (“Stopping By Woods On A Snowy Evening” is my favorite; it is well worth reading if you never have).

    As for genetics…mine horrify me and, as you know a bit of my story, I am sure you can understand why. If I am ever stable enough that I am in a place to start a family, my children cannot be born of my own eggs and DNA: adoptions, donors – I will not have my own kids. My family’s legacy with these beasts is too long, too complex and too painful. If I make nothing else of my life, it is that my genes will die with me; this legacy will end. I don’t say this to sound as if I am a martyr, I am not; this is just reality, for me. I can not, will not watch my children go through what I have. Of course, there’s no guarantee; but it should reduce the risk.

    And, don’t excuse the Brits. They may provide cradle to crave coverage; but they are ready to forsake their disabled and vulnerable. http://thebrokenofbritain.blogspot.com/ (specifically, http://thebrokenofbritain.blogspot.com/2010/12/announcing-one-month-before-heartbreak.html) shows this. http://5quidforlife.org.uk/about/ is also worth looking at, as it was started in response to a mental health consumer’s blog post stating that, if they took her disability benefits away, she would have no choice but to end her life. http://serialinsomniac.com/series/the-mr-director-person-letters/ are a collection of posts by Pandora, a blogger with psychiatric disability, and her fight to receive services. They may be better off than us; but their mentally ill are forgotten by the health care system, too.

    Erika

    Note from Michael: Yes, the UK is still sorely lacking in mental health care.

  11. “Hallucinations usually do. People who don’t have hallucinations don’t realize how elaborately constructed they are. The delusional world has its own logic and its own rules. It functions just like ours. It just isn’t ours.” (In response to Jani’s Visions, comment posted by Carl W. Goss)

    Yes, exactly.

    Now that I am not psychotic (I had a slip a little while ago; but I recovered before I lost touch with the common reality – I can feel myself slipping again, though), a lot of the delusions – especially the detail of it, and it was detailed – seems to be irrational; however, when one is in it, all of those experiences seem real, and make perfect sense. “She” seem(ed) – and in my mind, was – just as real as my parents, psychiatrist, and every other person I came into contact with; her back story, her history, her feelings, psychological state, plans for the future and such were just as detailed, and seemed just as real and accurate as if someone was telling me a list of previous jobs, girlfriends/boyfriends, childhood stories, etc; and the fact that she could project thoughts into my head, needed me to be injured to have complete and direct contact with me, as the more physically injured/close to death I was, the more in her world I was (instead of her indirectly sending someone with a lower ranking or ability – demons, who had no thoughts/emotions of their own and were purely evil; spirits [who were once real people, and are now under her control – voluntarily – and, though largely distant and malicious, are mixed – mainly evil or blank slates]; child spirits [same thing]; Shadows and Fragments [not complete spirits – just fragments or their shadow; sometimes not the full body]; or Prisoners and In-betweens, both spirits and those still alive, just beings slowly sucked into her world, refused to help her and wandered in terror, pain and disconnect, and were shown to me to get me to comply; I was becoming one of this last group, it was Her Mission]), the messages I thought I was finding all around me…all of that, very literally, seemed as real and logical as 2+2, the laws of Newton, algebra, protons, neutrons and the atom, and so forth. While psychotic, there is no difference – or, rather, the brain doesn’t make it. The delusional world has its own logic and laws, and they are just as real and make just as much sense – in that moment – as anything from This World (which, finally, I am starting to like).

    Erika

    Note from Michael: Thank you. I do my best to try and understand. I appreciate knowing that I got closer.

  12. 🙂
    I just wanted to also say your response to Carl regarding hallucination and delusion is so dead on, at least in my experience. It’s very meaningful that someone who does not hallucinate can understand that. That’s what is special about you and Susan and why Jani is lucky in a way.

    Note from Michael: Jani has taught me a lot. As I said in my reply to Eri, it is nice to know that I am getting closer. It is hard for us “neurotypicals” to have sympathy but Jani’s hallucinations are so real, so total in their construction, that they have become real to even me. I can’t see them (and never will) but I know they are real. I get pissed off at them, not Jani.

  13. Hey, Mr. Schofield –

    As an about-to-graduate senior, I can honestly tell you that I’ve learned more from you via this blog than a good 75% of the teachers I’ve ever had throughout high school. “The Road Not Taken” is a prime example – I’ve never heard of it interpreted independently, and you looked at it from a completely different perspective and weren’t afraid of it. For the people who listen to you – for me, at the very least – you’re still a teacher, right here. I’m learning how to think. I really wanted to thank you for that.

    Otherwise, I’m brainstorming ideas for my art final because I’m going to sell it and donate what I get here. A promise isn’t great, but its all I have right now and I wanted to let you know all the same.

    Keep on trucking, sir. We’ve never met, but I genuinely hope for the best, for all of you.

  14. what does this mean?
    What does this mean:

    thalamus is ischemic?

    You told that to someone on youtube.. i didn’t know what it ment… I decided to ask..
    thank you!!!
    -Spencer

    Note from Michael: Ischemic means “oxygen-starved.” A portion of Jani’s thalamus apparently lost oxygen at some point, most likely in utero before she was born. Basically is a form of stroke.

  15. Get Help Michael
    Michael there’s some things you just don’t put into a blog. You’re admired for admitting your imperfections? Only be the more imperfect. I wouldn’t like to be your wife reading this blog.

    Did you hit Jani or not? And when will you learn what the psychotic state really is? When will you learn to stop driving your child into an alternative reality? When when when will you get help for your anger management issues?

    When will you learn how to be financially astute?

    When will you learn that this state of your daughter has no root in geneology and has everything to do with the social environment you create?

    Why did you never look to alternatives? Why not? Easier to pop a pill? Easier to absolve yourself of responsibility? Easier to blame pre-determined genes? What is your problem?

    You need counselling seriously. When will you get it? No wonder your child is confused – you are confusing.

    Get help Michael and stop transferring to your children – you are the freak – not your kids.

    You should be ashamed. Of course you won’t post this. That doesn’t matter. At least you’ve read it – you silly silly man….and do not make the mistake of thinking I know nothing of the subject matter.

    shaking my head at your stupidity.

    who needs to read your book? It’s all in your blog – stupid.

    Note from Michael: I have a confession to make, Carol. I’m actually Adolf Hitler.

  16. Judgemental
    Carol’s comments are sickeningly judgemental. It’s easier to judge and place your opinions rather than try to understand his point of view & struggles with a mentally ill child, possibly two. You are probably the same person who gets a headache & pops an aspirin. Don’t spit out harsh comments if you have NO IDEA of the situation & are only witnessing it through reading Michael’s blog. Why comment or even READ his blog if you spew hatred like that… it’s disheartening to all the blog readers here who are trying to understand mental illness & are here to uplift the family with nice & encouraging words. I, myself, am going to school to study Family & Marriage counceling and will be dealing with families in this situation, so Michael’s thoughts & emotions open my eyes on how a family feels trying to survive (financially, emotionally, physically) dealing with mental illness.
    Do what you have to do to keep your family alive & well, Michael & Susan!
    All the Best,
    K J

    Note from Michael: I don’t let people like Carol get to me. There are very, very few of them, a fringe anti psychiatry group of people who don’t believe mental illness actually exists or they believe it is a social construct (if that were true, we would all be psychotic). It seems to be sweeping the UK and Europe right now, which is where Carol comes from. It is also possible that a lot of these people have a mental illness themselves but cannot accept that it is biological. They prefer to hang on to the belief that their condition is caused by trauma so they can keep blaming whomever traumatized them. Trauma is real, psychosis is real (but not caused by trauma because we all experience trauma). But eventually we have to let that trauma go and realize that neither trauma nor a biological illness defines who we are. So what I would say to Carol is to define yourself for yourself and stop defining others.

  17. Jani
    I saw Jani’s story on tv -twice. Let me first say she is a beautiful little girl. I was wondering if you are familiar with synaesthesia, something I’ve never heard of until reading about schizophrenia.I’m no Dr. but it seems Jani’s symptoms could be misdiagnosed synaesthesia? Please don’t take that the wrong way..like I said, I’m no Dr. Just something I was wondering. I was very touched by Jani’s story and how you & Susan interact with her in her world. I was so happy for Jani to meet the other children with SZ, even more so for you & Susan to meet their partens and form such an awesome support group for yourselves & your children. Sometimes when we’re dealt what seems to be the short straw we tend to lose our ability to see the bonus. You & Susan seem to face what God gives you with strength,love,understanding,patience and each other. Maybe it’s not like that at all, what do I know? From your blog,I’d say this is as hard as hell on you, Susan & probably harder on Jani then even she knows, but it appears you all do your best to be there for one another and the sacrafices you & Susan have made to keep your family together {two apartments, not sleeping together every night, etc.} are an incredible testament to the love and compassion you have to your children.
    Hang in there & don’t give up. Jani and your family have become an inspiration to many, even in families who do not face the same obstacles to face. :'(:'([u][/u]

    Note from Michael: No, no offense taken. Synasethesia is a legitimate condition however there are distinct differences between synasethesia and schizophrenia. In Jani’s case, her senses don’t appear to “bleed” from one sense to another. She is seeing an entirely different world populated by people and animals that she has never met or seen in reality that interact her just like I am interacting with you. So like I said, while I certainly do believe synasesthia is a valid condition (Susan does have a bit of it herself-she sees words and numbers as colors) and it may even be present ALONG with the schizophrenia, it is not her primary issue.

  18. culturalist
    *Disclaimer: first of all, please read through, it gets better i promise, i’m not totally bashing you. i’m not trying to be mean either. i realize the first few paragraphs are a little forward. i try not to apologize for being blunt especially on the internet wehre it is so easy to speak our minds freely on the faceless no-where. try not to get offended just remember “The Four Agreements.”*

    wait a second, wait a second, wait a second. just one second. i found the video on youtube, and traced it here. one thing keeps popping into my mind: sleep. it was said in the video that jani didn’t sleep as a newborn. have you ever been up for several days at a time? have you seen those shadows? have you seen “what’s really going on?.” i wonder if that has something to do with her brain now? is she sleeping enough now? sleep is a big deal.

    you also mention that she has this complicated world, with birthdays, siblings, and such. isn’t schizophrenia a lot more disoriented than that? it shouldn’t make sense, you shouldn’t be able to string anything together if it were schizophrenia.

    the most basic biology class will tell you about genetics if you are interested. no, your children would not be the same. they would not have the same biochemistry. do you know how gametes are formed? do you know what mitosis/meiosis is? do you know what goes on during metaphase? spiritually speaking, on the other hand, they just might be the same people, but who can tell how much nature/nurture/spirit influences our lives?

    your interpretation of this poem sucks, by the way. just sayin.

    you know, i’m not trying to bash you either. kids are stressful, and you have yourself a wild-cat. holy smokes! she is a charming young lady, but i can definitely see how hard it would be for ANYONE to take care of her for any extended period. wow.

    on the other hand gosh kids are tough, all kids. don’t think everything is a delusion: if she doesn’t answer you right away it’s probably because she’s a kid. i actually thought my son was going deaf the other day: he was sitting right next to me and didn’t even blink when i said “would you like some milk?”. i asked again, and again. finally i said “SON, can you hear me? Are you having trouble hearing me sweetheart?” he looks at me and says, “no, i can hear you.” “well why didn’t you answer?” “i dont’ know.” hmm. this happens a bit and drives me nuts. (especially now that he asks ME if i’m having trouble hearing HIM! ha ha!!!) but he’s not deaf, and he’s not being bad, he is just thinking about other things.

    but i do see that there is something different about your daughter, i don’t think you are making it up, or over reacting to “typical childhood imaginings”. no, from what i’ve seen she is definitely having more than just an “active imagination.” she acts the same way i do when i don’t sleep, and she sees things, and talks about things, and moves around, and looks at things the same way i do. of course i don’t think about things the same way she does with the numbers and cats and stuff. i have things with what people say in conversations, secret codes, universal conspiracy, etc. but i also hallucinate and see animals, hear spiders talking, see shadows, etc. i used to think i was just “noticing things” more, seeing the world for “what it really is” as this crazy ultra-sensory experience (but who knows, scientists say our brains filter out most of what is going on around us anyway, like 90%? maybe it is the “true world” after all…). and if this is all she’s ever seen, well, it’s no wonder she is having a hard time concentrating. is she getting enough sleep? for someone so young, as an infant not sleeping enough, could that have changed her brain so it is in perma-sleep-dep mode? poor girl so stuck in her head.

    you might try some of these youtube claims on exorcism/possession for your girl. everyone sure has a lot to say about her, and these psychics are quite interesting, and sure confident that they could fix her. couldn’t hurt, might be interesting. i’d be interested to see what they would say if it didn’t work, and if it did work, well, so much the better.

    i also saw a scary thing on youtube (you know all these doctors out there just diagnosing people based on a handful of 2 minute youtube videos…;) ha ha) but it was scary anyway that her symptoms could be caused by the drugs? like suicidal thoughts? could this be the case? could she be walking around with permanent sleep deprivation? and then all of a sudden these drugs are making her crazy
    (well besides the craziness that was already there, and i use “crazy” loosly and i don’t mean to offend.)? maybe not though, like everyone else i don’t know you, and i’ve only seen a handful of youtube videos. your blog is interesting in a disturbing sort of way though.

    take care,
    annie

    Note from Michael: The only time she didn’t sleep was as an infant (and even then she would sleep as long as we stimulated her all day every day). By the time she was 18 months she was sleeping normally and still does to this day.

  19. Mike – you are a saint
    Hi Michael,

    I just wanted to drop you a quick line to let you know how much I admire the strength, insight, and patience that you display in the writing of your blog. As a mentally ill young-adult, I am very moved with the commitment and love you’ve shown to your child. I really wanted to apologize, also, for everyone who uses this blog to try to wise you up to what is really going on with your daughter – geez!, you know her better than anyone, you know what she struggles with. I appreciate how thoroughly you have researched and consulted about her illness and diagnosis. I makes me a little crazy that people think they can read a few blog entries or watch a 60 min television special and then have the gall to tell you that you’ve clearly misdiagnosed your child. You’ve been an absolute prince in responding to these people, you show empathy, poise, and patience and I just want to let you know that that kind of strength of character and goodness does not go unnoticed. Thank you, Michael, for your undying devotion to your family and for working so hard to help others. Stay strong, brother.

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