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44 Million Miles (Not Fade Away)


 

This is my first blog entry in nearly two months. I don’t even really remember where I was nearly two months ago. I know where I was physically, of course. That never changes. But I have come to realize that my blog is my emotional memory.  By necessity, we must live in the present, so I am unable to hold onto how I felt yesterday let alone two months ago. Part of that is the stress of always trying to keep Jani at least somewhat present in our world. Why is this important? Certainly it is true that there is a risk to her safety when she is constantly seeing hallucinations that can jump from buildings and be fine, defying the physical limits of the human body. But that really isn’t the main reason we don’t let her go completely into her world. The main reason is that her happiness, when she is truly present in our world, is profound. It is the only time she smiles, that huge smile that she used to give all the time when she was two years old. Jani cannot experience happiness on her own any more. She hasn’t been able to do this for years. We have to go in and get her, gently teasing her slowly into our world, letting her hold on to her hallucinations like a security blanket, so that she can experience happiness. We have to manufacture Jani’s happiness, or at least manufacture opportunities for it to happen. All the time. Every day. Every moment.

 

Being responsible for someone’s happiness is a far greater burden than being responsible for someone’s life.

 

My last blog entry I believe had something to do with the frustrations of trying to communicate what Jani experiences. In the last week, it has gotten easier to just say “Watch ABC this Friday at 10pm.”

 

I still haven’t seen it, by the way. As I write this, it still has not aired on the West Coast.

 

However, I am already getting emails from parts of the country where it has already aired. Most express support (thank you), a few still try to convince me that Jani is possessed by spirits (don’t waste your time), some try to convince me that Jani has special powers to see alternate worlds and plains of existence (so what if it kills her?), some actually think they are sharing some new revelation with me (I have heard all the gluten/dairy/sugar/preservatives, etc. before) and some, the most painful ones, are those that immediately dash off to their computer to write to me, desperately wanting to share what they are going through RIGHT NOW with their child. Those are the emails that make me want to reach through the computer screen and grab their hand and tell them that they are not alone and that this is not just about saving my child but saving yours as well. Even if Jani miraculously got better tomorrow, I would stop working to save your children either.

 

After that last line, I took a break for an hour to watch the 20/20 episode. I am still not entirely sure how I feel about it. Three families. Three girls.

 

This little girl got better on Saphris.

 

This little girl got separated from her family and sent to Colorado.

 

And this little girl didn’t change at all.

 

My little girl is, of course, the last one. Jani was the through-line of the entire episode while the other two went up and down. Jani was the constant while the world tilted on its axis around her. Storms raged and blew themselves out and Jani never stirred.

 

In a way, I suppose, that is a good thing. As much as Jani’s schizophrenia isolates her from the benefits of our world, it also isolates her from its negatives. Unlike Becca and Brenna, Jani’s hallucinations are not terrifying. They never have been. Schizophrenia is as unique as the brains it infects. No two schizophrenics will have exactly the same symptoms, which is why it is so difficult to diagnose. Its only common thread is sustained hallucinations lasting at least six months (Jani’s have been observed for nearly five years now and as the home videos of her as a baby showed, probably always existed). The fact that Jani’s hallucinations, unlike most others with schizophrenia, are not terrifying to her is both a blessing and a curse. It spares her the terror that Becca experienced (and Brenna still does, as far as I know) but also makes her illness far harder to treat.

 

I was particularly struck by Becca’s statement that I shouldn’t interact with Jani’s hallucinations, not because I was offended, but because it truly showed that despite both girls having a diagnosis of schizophrenia, a huge gulf exists between them that I could never close. Becca cannot understand that unlike her, Jani does not resist her hallucinations. And if she does not resist them, what good does it do me to resist them? To do so, to deny their existence, would simply drive a wedge between me and Jani, and that is ultimately what I am trying to stop. I am trying to get my daughter back and so far, I know that Susan and me are still more important to Jani than her hallucinations. I don’t want to risk that by challenging that which I know is stronger than I am. You don’t pick a fight with somebody bigger than you. I also don’t want to make Jani’s life in our world a living hell by denying the existence of her world. I suppose this means, and perhaps what the 20/20 episode clarified for me, is that I am trying to coexist with Jani’s schizophrenia. I am trying to share her with it. Because I have to. It is the only way to have any relationship with my daughter. It is the only way I can show her that I love her.

 

There were three distinct outcomes, but only two decisions. I know that Cinnamon tried countless medications and that Becca has spent almost as much time in the hospital as Jani. But in the end, it felt like Cinnamon got lucky. The last of a long line of medications, Saphris, finally worked. Cinnamon got her daughter back. If I am truly honest, the strongest emotion I feel right now is jealousy. Cinnamon got her daughter back. Of course I am grateful that Becca is no longer tortured like she was.  Of course I am thrilled for her recovery. Maybe jealousy is not the right word. I am envious perhaps. I want my daughter back, too. As happy as I am that Becca got away from this terrible disease, at least for the time being, I am also saddened that my daughter hasn’t been able to follow her. You don’t know how much I wish Jani and Becca could play on the same softball team. But they aren’t even on the same planet anymore.

 

The Wohlenbergs made a decision that I simply can’t make. I flat out refuse. Please don’t think for a second that I think they made the wrong decision. They did not send Brenna away because it was easier for them. It divided their family, and who knows if Brenna’s illness will ever allow them to come together again. I know what it is like to have a family divided. No, they sent Brenna to Colorado because it was the kindest thing to do for her. The poor girl was tortured by fear of what she might do to her sisters. Forcing Brenna to stay would have been more torture. At least that stress is gone from her life. I still struggle though to reconcile where Brenna is now, in terms of her mental state, with the sweet girl who eight months ago, at Jani’s seventh birthday party (which you see periodically in the 20/20 special) said, after I said something wacky to Jani, “You’re silly. That’s okay. I like silly people. People say I am silly, too.” I don’t know if the Wohlenberg’s can understand this, but I feel like I lost Brenna too. In that moment nearly nine months ago, I really thought that I could save them all. Call it arrogance. I really don’t care. It’s not. It is that I saw the sweet girl inside the illness, and thought maybe I could, as I have been doing with Jani, keep it at bay in her. I thought I could save Brenna’s innocence. I wanted to save it. But it took it anyway. I wasn’t there to see what you saw tonight. I didn’t see those desperate moments in the Wohlenberg house. Having seen them now, I feel totally inadequate. I feel like the demons inside Brenna laughed at my hubris.

 

I don’t know why I feel such a compulsion to save other peoples’ mentally ill children as much as my own. Logically, you would think that simply getting Jani through the day, keeping her as present as I can, giving her as much happiness as I can, would be enough. But it isn’t. I set up an online support group for parents of mentally ill children with the express purpose of providing real physical support to each other (a goal I have not managed to achieve because members are spread across the country and the world). I am still in the process of setting up a non-profit organization called The Village Project (named for the saying “It takes a village to raise a child) to provide trained interns to provide hands on assistance to families with mentally ill children. Why am I so compelled to save every mentally ill child in the world? Part of it is probably because I can’t entirely save my own child. I can delay her illness but I cannot stop it entirely. So every other child with a mental disorder becomes an extension of my own, another chance to do battle with the demons deny them a normal life and maybe win once in awhile.

 

Partly it is because I would want you to do the same for me. You saw footage of Susan and I in Westwood, where UCLA is located, handing out money that we didn’t have to homeless people because, as I explained on camera, “That could be my daughter.”

 

And part of it is that I feel terribly alone and terribly frightened and I need you more than you need me. I need you to reassure me that my daughter will survive, that she will be happy, that you can help me make it happen. I can’t do this alone and so I try to rope every other family with a mentally ill child into my world to bolster my confidence that I can keep Jani alive.

 

And this little girl stayed the same. I took no hope from the 20/20 episode. I watched the gray matter of brain scans taken at the NIMH shrink due to the schizophrenia. And I know that that could easily be Jani’s brain (it wasn’t-Jani’s never had a PET scan, only an MRI and CT scan).

 

I don’t want to go into this abyss alone. If I am going to watch my daughter’s brain disappear, I can’t do it alone.

 

I need you to give me the strength to fight back. Because I have done everything. I take Jani to animal shelters all over LA, pet stores, and pay for equine therapy, because animals are one of only two things that bring Jani back to our world. Real animals interest her almost as much as her hallucinations, so I try to surround her with as many real animals as I can find.

 

The other thing that brings Jani back is her Glendale College psychology interns. Although the youngest is more than a decade older than Jani, they are her only flesh and blood friends. And like me, they go into her world. Because I trained them to do that. And she loves them and looks forward to their daily visits (there are more than ten interns and at least one every day). They are Jani’s entourage, constantly engaging Jani with the real world in five hour shifts. They are an extension of Susan and me, for it became clear that we weren’t enough anymore. We lacked the energy to constantly compete with Jani’s hallucinations. So now we have people to relieve us periodically.

 

Animals, her interns, and Susan, myself, and Bodhi are Jani’s only link to our world. Part of the reason I won’t send Jani to residential treatment, even though it would mean Bodhi having both his parents again, is that to do would be disengaging three of Jani’s links to the real world. And partly it is because I am afraid that if I send her away, I will never get her back again. I want as many moments as I can get to see Jani smile.

 

So that was our choice, which 20/20 put very succinctly: to soldier on, even if parts of us crumble away and Bodhi still can’t talk at 27 months (he is now in speech and occupational therapy). We crumble slower now, because the interns are here. Susan and I have set up as good a world as we can for Jani.

 

This life with Jani is our only life. We have no life outside of her. We sink or swim with her. We are happy when she is doing well and we fight despair when she is not. I say not so you will feel sorry for us. It is what we chose. We chose to live with Jani as our sun and us orbiting around her, with our meager gravitational pull working against her massive gravitational pull.  It is far easier to be pulled into her fires than for us to pull her back to our surface. You never think about this, but consider for a moment that the sun is so much larger than all the planets of our solar system combined, yet the massive gravitational forces that keep our planet from spinning out into space don’t also pull us into the furnace. By simple physics, it would make sense that the sun would draw all matter within its gravitational reach into it. Yet it doesn’t. Even stranger yet, comets are pulled relentlessly from the darkest and coldest reaches of our solar system toward the sun, only to be let go again to return to where they came from.

 

So why is it that the sun, that which allows life on our planet, does not suck us into it? Why have we not burned up long ago?

 

The answer is that the sun’s gravity, although stronger than any other body in our solar system, is not the only body with mass. Any object with mass has gravity. And the gravity of the planets pull back against the gravity of the sun.

 

But what about little Mercury? Mercury ranges from 29 million to 44 million miles from the sun. That distance is phenomenal and impossible to comprehend, but Mercury comes close enough that the sun would burn off any atmosphere. Imagine the sunrise on Mercury. It would fill the entire sky from end to end.

 

But 29 million miles is the closest the sun ever gets to eating Mercury and 44 million miles is as far away as it can get.

 

What stops the sun from drawing Mercury in, a planet not much bigger than our moon, and destroying it?

 

We do.

 

Well, not us humans specifically, but Earth. And Venus. And Mars. And Jupiter. And Saturn. And Uranus. And Neptune. And Pluto and Charon.

 

You see, it is the gravitational pull of the remaining planets that keeps Mercury from being sucked in. Every ninety days, Mercury is drawn toward its destruction in the nuclear fires of the sun, only to be pulled back by the rest of the solar system.

 

It takes the rest of the solar system pulling on Mercury to save it.

 

In a way, we are all Mercury. We all depend on the rest of the world pulling us out of the fire. Jani is Mercury and myself, Susan, Bodhi, her interns, the animals, they are the rest of the solar system pulling her out of the fires of complete psychosis. Have I given Bodhi all the attention I gave and continue to give Jani? No. I can’t. In refusing to choose one child over another, I risk both. I know that. I know that Bodhi, for all the love that he gets, has to compete for my attention. I am prepared to answer to him when the time comes. I will tell him that he was Earth to Jani’s Mercury. He helped to pull her from the fire. And I will tell him I would have done the same thing for him. And I still might have to do the same thing for him.  I will save both my children, and yours, or I will die trying.

I am Mercury too. Jani’s illness and my stubbornness have pulled me toward the inferno countless times and every time their have been other planets out there that pulled be back to 44 million miles out, close enough to still feel the heat but able to survive it.

 

Jani needs as many people in her orbit as she can get. And so do we.

 

Gravity is both the strongest and the weakest force in the universe. It is strong enough to hold planets but weak enough to allow us to pick up a child off the floor. It is the only force in the universe that makes no sense.

 

Except love.

 

It, too, is both the strongest and the weakest.

 

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10 comments on “44 Million Miles (Not Fade Away)

  1. Excellent blog
    “Being responsible for someone’s happiness is a far greater burden than being responsible for someone’s life.”

    This is so, so true. I’m still at a loss as to how to manage that. Glad to see you’re back online Michael- I’ve missed your blogs. Particularly the last three paragraphs here really ring true for me.

    Let us know how the Village Project develops. 🙂 Will be thinking of you guys.

  2. You know how I feel about this.

    We had to make the same decision The Wohlenberg’s made. We put Tim in long-term residential treatment. The violence and anger he is capable of when he’s not stable is dangerous for him and for us.

    Tim’s lucky in that of his three distinct voices, one is supportive and friendly, one is, well, depressive, and one – the Screamer he calls it – is down right mean and evil. The screamer is the one we medicate for.

    But I understand not being able to do it. We resisted meds until Tim was 12. 12 – that’s a hell of a long time to tough it out. But he wasn’t 6 foot tall, 260 pounds then either, like he is now.

    Tom said something interesting last night after we watched 20/20 – well, two somethings, but one as it relates to your post. Seeing you and Susan, and the Wohlenbergs, and Cinnamon and the stress and exhaustion and sometimes dispair on your faces is something we didn’t see in ourselves until we had time to separate from it. We were Sisyphus, constantly pushing uphill against Tim’s disease, straining our marriage and the mental well – being of our other children. Now that we have a break from it, we see that the rock was okay at the bottom of the hill for a while, while we regroup and recharge to start the push uphill again.

    I’m not trying to tell you your choice is wrong, or convince you to try residential. Every day I avoid Tim’s closed bedroom door because of the sorrow I feel that he’s not here with us. I’m saying that you are your child’s best chance to make it. And the sun is expanding. I don’t want you to realize 44 million miles really is too close when it’s too late.

    Take care of yourself!

    — Chrisa

  3. I feel your pain
    Hi Michael,
    I will say again how thankful I am that you have chosen to share your story with the world. You and Susan have a wonderful commitment to helping children that I admire and want to be a part of. I often think how lucky I am that my son did not start to experience symtoms until he was almost an adult. We had many normal years and I think that gives him a basis in reality that he can fall back on. Of course in the middle of a total psychosis none of that matters it is when he is somewhat stable that he had that advantage. this past week I attended a session of a parent to parent group at my local NAMI. We discussed the brain. I heard for the first time, what was mentioned in the 20/20 piece, about the gray mattter. It was very upsetting to hear that. As usual you hit just the right note in explaining things in a way I wish I could. I direct my family to your blog, I’m glad it’s back, and just say “what he said.” Lastly I agree about the animals being good therpy. I have a dog and 3 new kittens and they can really calm my son and it also gives him the responsbilty of taking care of something else. Thanks again, Marcie

  4. I watched 20/20 with my mom. Part of me would really like to be a parent one day (I’ve gotten lucky with a new medication) and I didn’t think that she really “got” how I feel about the risk of passing my psychosis on, someone else potentially becoming profoundly disabled. She just asked if I thought about doing violent things; I don’t.

    What got me about this show was how much like a Dr Seuss book Jani’s hallucinations/delusions/ideas of reference seem. Relating to that initially calm but sickening feeling when it happens made me feel like I was understanding something about her. I thought the way that they edited your relationship with Susan showed the love. Seeing your anger gave me insight into Becca and Brenna’s situation that I don’t think I would’ve gotten to on my own. I thought the show was well put together in that sense. I laughed at the, “wheeee BOOM.”

  5. Jani’s favourite colours
    Hello,
    I’ve been a reader of this blog for a while but this is my first time commenting. I would like to start by saying you and your wife are doing a fantastic job supporting your daughter.I also wanted to make Jani a bracelet but was curious as to her favourite colours to make it with. (if you have a mailing address I am able to send it to, that would be fantastic)

    Note from Michael: Thanks, Rachel. Jani’s favorite colors are pink and purple. I will email you a mailing address.

  6. good show
    I hate to say it, but I don’t think that’s how planetary orbits work. 😉 It’s more physics stuff, the way satellites stay in orbit around the earth… they’re “falling” into the earth at a constant speed, which allows them to revolve around it. (The planets don’t line up one behind the other to counteract the sun’s gravity and all.) :'( But that’s beside the point, I suppose. Your comparison to how you and Susan, Bodhi, animals, etc, have to pull her out still works. 🙂

    I watched the show; it was difficult to watch. It was amazing that you had footage of Jani as an infant that showed her probably hallucinating. And it still boggles my mind that anyone would say it was due to nutrition or demons or abuse. I’m glad that you’re writing again, even though there is no real progress to report. I followed here from onenoteshort quite a while ago, and have been reading ever since.

    Okay, down to business.

    Have you heard of the Pepsi Refresh Project? They donate money (a significant amount, I believe) toward community projects like retirement villages or playgrounds or free cancer screenings or something. I believe that you could get funding to begin The Village Project through this, especially if you publicize it to have people vote for your cause. (Maybe wait til you have your readers back up after your hiatus, maybe get local tv stations involved, whatever you can do.)

    http://www.refresheverything.com/index

    Good luck.

    Note from Michael: Hi, Melissa. Yes, you are correct. That isn’t exactly how planetary physics work, but I thought it sounded nice. No one should ever take anything I say as the absolute truth. I use concepts like that as I way to try and explain Jani’s world and what I am trying to achieve in ways people can understand.


  7. Hey

    I just watched the 20/20 episode.

    I think that you’re right that Becca thinks its a bad idea for you to interact with Jani’s hallucinations because hers are scary. If you interacted with hers, she would probably see you as a threat/on his side. She also probably has that attitude because that’s the attitude her mother has, and her mom is looking out for her. If it means anything I think your choice to interact with Jani’s hallucinations is “contraversial” only because its ahead of its time. Even recognizing her hallucinations are real (in as much as they are completely real to her) is completely unheard of in some circles.

    Since Jani already has a voracious appetite for learning, have you considered teaching her psychology? Not just that she’s sick and what her disease is, but the more academic side – social psychology, personality psychology, positive psychology?

    If she wants to be a vet/ take care of her animals (from the video on your home page), maybe you could teach her how to be a doctor(psychologist) for her hallucinations. She’s clearly smart enough. Maybe if you gave her enough knowledge she might be able to tell you more about her hallucinations and their personalities. She might like to be a doctor instead of a patient for a while.

    I hope that’s not a gluten/dairy/sugar suggestion. ;D

    Note from Michael: No it is not a bad idea at all. Jani is no longer able to pay attention to “subjects” and tends to resist learning anything, so unfortunately she is not the voracious learner she once was. The disease has eaten a lot of that away. On the positive side, though, she is learning to set her own limits and she will tell us when she feels she needs her meds. That makes me hopeful.


  8. I wrote a longer message but my browser erased it i think?

    Ah well.

    In summary – if Jani has a voracious appatite for learning, maybe you could teach her to be a psychologist. Not just the abnormal psych she probably already knows about her own illness, but the more academic side of personality psych, behavioral psych, positive psych, social psych – on the video on your homepage she said she wants to be a vet (to take care of her animals and her numbers) so maybe you could teach her how to be a doctor. She’s clearly smart enough. And the more she understands her hallucinations, the more she can share with you.

    Just a thought.

    Note from Michael: Nope, got both messages and I think you have some good ideas. Right now I am just trying to teach her whatever she shows interest in, which isn’t much these days. See my comment below.

  9. Wacky theories about nutrition
    I imagine you get lots of advice, often from people aren’t near the tough end of this like you are. I see you mention the gluten/dairy/preservative theories and say you’ve heard of them. Have you tried them? I don’t see gluten appearing anywhere in your book. There are some related ones like involving high doses of nutrients.

    I have tried those approaches. I took a large dose of B vitamins and was out of psychosis in 24 hours. (This intervention works faster the sooner it is applied). I also appear to have coeliac disease (gluten intolerance). The reason why I’m not formally diagnosed is that the process of being diagnosed is rather long and requires eating gluten during it. It can take 30 days or more for gluten to clear the body.

    Orthomolecular psychiatrists (trained medics, who also have this additional approach)can be found via http://www.orthomed.org/isom/isom.html

    I’m not going to make wild bold claims for it. The approach has kept me out of hospital for 12 years and only taking lithium 99 per cent of the time. I’ve been working, running businesses etc. I still have quite a lot of clutter though! 8)

    Note from Michael: I am happy that it has worked for you and I appreciate that you don’t make “wild bold claims” about it. No, we haven’t tried it because the diet restrictions would only make Jani’s life harder. It is hard enough to get her eat anyway so I am not going to restrict her diet on something that has no scientific support.

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