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Coming Down is the Hardest Thing

I never read my blog entries. I don’t even read them through before I post them. I write and I post, so when there are mechanical mistakes or missing words in my blogs, that’s why. Partly this is because I am forced to write them in the middle of the night, when whatever child I happen to be on duty with that night is asleep, and partly it is because my blogs are more like radio transmissions and the battery on my radio is running out. I only have time to say what I need to say before the battery goes dead.

 

I am not a pilot, but I come from a long line of them and aviation has always been an interest of mine. Although it might sound fairly morbid, one of my interests is in listening to cockpit recordings of airline crashes. I can assure you this is not some sort of sick fascination on my part. I don’t enjoy knowing I am listening to the last moments of the flight crew’s lives. I listen for the same reason I listen to war stories: because it is my duty as a survivor. I believe that anyone who is alive has an obligation to carry on the memories of those who are not and to try and live our lives accordingly. It is sort of like the old concept of carrying the flag that dates to the earliest written records of warfare. If the soldier carrying the Colors is killed, another soldier must pick them up, even if it means dropping his own weapon to do so. The Colors, the flag, must never remain on the ground, because if the Colors remain fallen, then it represents a psychological defeat to the army. If, as a soldier, you can’t look around and see your flag flying anymore, then you know you are beaten. This tradition largely passed with the end of army against army in the open field. In modern warfare, most of the time you never see your enemy, or if you do, you don’t realize they are your enemy until they walk up to you smiling and detonate a bomb strapped to their chest.

 

Schizophrenia, or mental illness in general, is a bit like that. It doesn’t fight you in the open field. It is a bomb strapped to the brains of our smiling and loving sons, daughters, brothers, sisters, mothers, and fathers.

 

Like terrorism, it uses the innocent.

 

Back to that in a moment. I listen to the ATC or cockpit voice recordings of airline crashes and marvel at the calmness. I marvel at how pilots and air traffic controllers can convey so much in so little. Neither one can scream over the radio. Neither one can panic.

 

I want to share one with you.

 

It is the communication between New York Departure and US Airways 1549, the A320 that suffered the loss of both engines of take-off from La Guardia and ended up landing in the Hudson River. Captain Sullenberger notifies New York Departure, in a tone of voice he like he is reading a bedtime story to his daughter after a long day, that he has lost thrust in both engines and needs to return to La Guardia. The air traffic controller gives him directions to the closest runway. Sullenberger says “Can’t make it.” The ATC, following protocol, offers him another runway. Sullenberger replies, “Unable.” A few seconds later, he asks about New Jersey. The ATC replies that Teterboro Airport was available and asks Sullenberger if he would like him to contact Teterboro. Sullenberger doesn’t reply. ATC contacts Teterboro, who immediately gives permission to land. Sullenberger replies “Unable,” again, followed soon after by “We’re going down in the Hudson.”

 

ATC then reports that US Airways 1549 has disappeared from radar, but keeps communicating with the plane, offering Newark Airport. The air traffic controller had heard the last transmission, had heard Sullenberger’s terse “Unable” to every suggestion, and knew the plane was likely down, but his training required him to keep offering solutions. Why? Because in an emergency, a pilot’s priority is to fly the plane, not answer the radio. And when you are an air traffic controller, all you can do is keep offering potential solutions and remain calm. Whatever fears that ATC had, he had to keep them buried.

 

Being a parent to a mentally ill child is like being an air traffic controller to a mortally stricken airliner. Jani is the plane trying to stay in the air. People sometimes ask me how I discipline. The simply answer is I don’t. That would be like trying to control from the ground a plane that is crashing. My goal is not to get Jani back to La Guardia. My job is to get Jani down safely and so I will keep offering solutions and if she tells me “unable” in her own way, I will offer another.

 

That, and Jani doesn’t have behavioral problems. One of her interns said to me the other day, “I’ve been watching her for weeks now and she doesn’t really misbehave.” This is the first time I have ever heard somebody really say that. UCLA said it, but in their own way. They said, “It is difficult to tell what is psychosis and what is normal seven year old behavior.” Not really. Jani is the sweetest child when she is not psychotic. She loves animals and babies. She loves us. She wants to help. She wants to feed Bodhi. It is just that even UCLA can’t quite bring themselves to actually come right out and say that Jani, or any other child on their unit, doesn’t misbehave. That is how strong the cultural idea of responsibility for your actions is.

 

One thing about dealing with a loved one who has mental illness is that it actually makes you believe more in the inherent goodness of humans. We are flawed, no doubt, but I believe that we all basically want to do the right thing. We all want to fly. It is just that some of us are piloting planes that are broken.

 

We are not inherently evil. Even serial killers will say that they knew what they were doing was wrong and they wanted to stop, and for awhile, sometimes, they could. But eventually the urge to kill simply became too much.

 

I am not saying that those that murder should not face consequences. We all have to face consequences. Serial killers must face the consequences of their actions. But believing they’re evil is just a way to feel morally superior when it is simply that you were lucky enough to be born without a brain telling you to kill.

 

From the time it leaves the gate at the airport of origin to the time it arrives at the gate at the airport of arrival, a commercial airline flight deck crew talk to multiple air traffic controllers. This is done to keep any one air traffic controller from getting overwhelmed. Instead of handling flights, each controller handles a section of the sky. For example, let’s say a flight is departing New York JFK to Los Angles International. First, the pilots notify JFK “Ground” that they are ready to taxi to the active runway for departure. Once at the runway, the “ground” controller hands the aircraft over to JFK Tower. That controller gives permission to take off. Once the aircraft is clear of the airport, the JFK tower controller hands the aircraft off to New York TRACON, or “terminal radar approach control,” better known as either New York “Departure” or “Arrival” depending on direction. This controller oversees all aircraft entering and leaving New York airspace. This controller will set the aircraft on a heading and initial altitude, then hand the plane over to New York “Area Control Center,” better known to pilots as “New York Center.”  This controller handles flights transiting all airspace from Boston to Washington DC that do not intend to land. After about an hour, the aircraft will be handed off to a controller at “Cleveland Center,” followed by “Indianapolis Center,” “Chicago Center,” “Denver Center,” “Salt Lake City,” before finally being handed off to LA Center somewhere over Nevada. Then it is LA TRACON “LA Approach,” LAX Tower, and LAX ground.

 

Since often a pilot will talk to several controllers each controlling a different segment of airspace in each center, by the time the plane lands at LAX, the pilots will have been handled by at least 25 different controllers.

 

Imagine if people had that. Everywhere you went in life, there was always somebody with you, talking to you, watching you, making sure you were safe. And so that person didn’t get burned out, after an hour or so, somebody else would take over.

 

That is what the college psychology interns do for us. Before them, it was just Susan and me, working 12 hour shifts everyday trying to keep Jani from crashing. UCLA gave us some break, but UCLA is like military airspace. At UCLA, Jani’s altitude and direction are set for her. Any deviation from the flight plan and she is grounded.

 

That can’t happen out in the world. It is too big a space. And part of flying is not having your every move controlled by somebody on the ground (meaning somebody outside of your head). But every pilot needs to know they are not alone and that when they declare an emergency, there will be a calm voice on the other end of the radio ready to offer solutions and who won’t get frustrated when the initial suggestions are rejected because the person is “unable” to comply.

 

Because of the interns, Jani can fly and Susan and I don’t always have to be watching the radar screen, looking for signs that Jani is losing altitude. The interns are our relief, TRACONS that will guide Jani as she flies through our world and keep her from crashing.

 

This is what I want the Village Project to do. I want the Village Project and its members to serve as air traffic controllers for mentally ill children, keeping them flying until they can hand them off to another member.

 

I know because of the media attention that Jani has gotten, it is easy to think she is the most likely to crash, but that isn’t true anymore because there are now so many air traffic controllers in Jani’s life, keeping an eye on her. But as the founding member of the online support network for parents of mentally ill and spectrum kids, I get an emailed copy of every message that is posted to the group. And it is like sitting in front of a radar screen, watching planes going down all across the country. Kids with schizophrenia and bipolar and ever mental illness you have heard of and many you haven’t are going down and their parents or guardians are desperately trying to get them safely back on the ground. Sometimes they vent, but what amazes me is that most of the time, they communicate what is happening just like that New York air traffic controller who handled US Airways 1549. They are calmly trying to deal with an emergency, and as every parent of a mentally ill child knows, each emergency could be the last. You never know if your child will be able to recover and land safely. All you can do is keep talking, keeping your voice even, holding back the fear, because the fear won’t help. You have a job to do and you have to keep doing it even if your child drops off the radar screen or stops answering your transmissions. That New York controller kept offering potential landing sites to US Airways 1549 even after he lost radar contact, because air traffic controllers are trained never to give up. Maybe the radio on the plane might be out. Maybe the IFF that allows the radar to track the plane has malfunctioned. Maybe the pilot is just too busy to respond. But controllers are trained to keep talking, keep trying to communicate, even as they call for emergency rescue, always hoping that the plane is still in the air, until they get confirmation that the plane has crashed.

 

What I hate now is that I read these messages in the support group everyday, I hear the transmissions, and there is nothing I can do except listen. I want to be there, to spot that parent at the radar screen, to help guide that child down. And when I am exhausted, I want somebody else to take over for me. This is why the first and primary goal of the Village Project is to establish a network of interns for every parent of a mentally ill or spectrum child who can help keep these children flying. A network that will be there for these families when their child declares an emergency, because existing social services won’t. They don’t help. They exist to train and to judge. But any parent of a mentally ill or spectrum child already knows more than any social worker ever will. Social workers follow a script. Parents follow the child, just like air traffic controllers have to follow the planes. Air traffic controllers do not try and tell the pilot how to fly the plane. They provide “corridors” (rules) but the pilots, like the kids, already know the rules. What they need help with is navigating the world. And so the primary job of an air traffic controller is to help the pilot go where he or she needs to go, not tell them how to fly.

 

I read about parents who have to deal with psychiatrists who don’t believe that children can have bipolar or schizophrenia, which is a little like refusing to believe we went to the moon. Just because you don’t see it happen doesn’t mean it isn’t happening. Just because you weren’t there to see Neil Armstrong and Buzz Aldrin plant the American flag on the Sea of Tranquility doesn’t mean it didn’t happen.

 

Hospitals, at best, can only try to get the child flying again, and because of insurance pressures will often send children back into the sky with only one engine functioning.

 

And Residentials just take kids out of the sky altogether, not necessarily because they are trying to deny them the ability to fly but because sometimes these kids need a more heavily controlled airspace to operate in.

 

I want the Village Project to be the third way, a way that could potentially allow mentally ill children to stay with their families. I want it to provide eyes and hands to help keep these kids in the air, because they are wonderful children in the moments when their illness lets them go, and they deserve to fly.

 

The Village Project will not serve the same purpose as NAMI, Bring Change2Mind, or the Child & Adolescent Bipolar Foundation, all of which do different things. NAMI is the umbrella whose primary purpose is both education for those who live with mental illness and, more importantly, it is the political arm of this war. Bring Change2Mind’s purpose is to eliminate the stigma, beautifully represented by their shirts that actually have a person’s diagnosis printed on it, as well who they are beyond their illness (father, son, daughter, mother, etc). The Child & Adolescent Bipolar Foundation is still fighting to prove that bipolar disorder does in fact exist in children. They are like Galileo against the Catholic Church, still fighting to show that the earth does in fact revolve around the sun.

 

What the Village Project will do is no less important. It is just a lot more expensive. Because what I want the Village Project to do is to actually provide in home help to families with mentally ill and spectrum kids. I want the Village Project to provide respite to the parents and to provide the children a link to the world.

 

NAMI, Bring Change2Mind, and the Child & Adolescent Bipolar Foundation carry the flag. I want the members of the Village Project to pick it up when it falls.

 

Note: Please consider joining your local NAMIwalks. It is a great way to show your support for the cause. Many of you have written to me to ask “What can I do?” Well, you can walk or support a walker at a NAMIwalks event closest to you. Susan, Bodhi, Jani, myself, and as many of Jani’s interns as we can get (because I doubt Jani will actually walk so some will have to watch her while others walk) will be attempting the local Ventura NAMIwalks. Here is the link if you would be interested in sponsoring me as a walker. Click here to sponsor Susan. I consider myself blessed that so many of you have come to the aid of my family, so from now through May 1st any donation made via the Paypal donation button on the main page will be used to sponsor me and Susan in our NAMIwalk.

 

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5 comments on “Coming Down is the Hardest Thing

  1. As a psychology major myself, I so wish I lived close enough to actually be a part of this intern program to help be apart of Jani flying. The Village Project cannot come soon enough. Best idea I’ve heard in so long. Dealing with mental illness myself for about half my life, I will be walking for NAMI in New York City on May 8.

    Note from Michael: Kate, you may soon be able to help. There are families in the support group in CT and NJ so eventually there will be an East Coast Village Project as well. Would you be interested in spearheading an internship through your university? All you would need is to find a psych professor willing to get on board. I can help with that. Email me at michael.schofield@csun.edu

  2. wow, this one really hit home with me. All your writing is great, even with the missing or wrong word here or there :). I don’t talk much about my own experiences, mostly because luckily they are few and far between. My bf is diagnosed bipolar (it has also taken me a very long time to just say that, he still won’t) but without insurance actually seeing the phycologist is too expense, luckily his doctor is a good man and sends his script in the mail every month. Everyone at my job does know that when he calls and he says he NEEDS to talk to me, even if I’m busy I need to talk to him, because I’m the one, usually the only one that has the patience and ability to talk him back to the ground. Well these past 2 weeks there has been none of that, no talking, just terrible, terrible moods, to the point I’d rather stay at work. Which then of course sent me into a bit of depression, I usually just get hit with the seasonal depression, which had been starting to subside then the weather turned on me, boy how I wish the weather didn’t alter my moods so much but it does then put my bf ontop of that who I often think hates me (which after 6 1/2 years and ALOT together I know he doesn’t) Well yesterday it came to a head, he came home from work to go the the hospital, doctor said he was very very close to a heart attack (at 30) something I tell him all the time he is going to give himself. After calling some pharmacies while he was gone, I found one that would fill his depokote for for $16, verses about $150 which is the reason he hasn’t been on it, just the xxanax which is cheap but really doesn’t do anything. after he came home and gave me the heart attack news I was able to talk him down, leaving me totally drained for the day but whatever, I talked him into going on the depokote again, the hospital backed me up with the xanax and after I equated it to the reason an alcoholic drinks is to mask their problems and thats what xanax does for him (sure it works for some, and it makes a good sleepy pill for me)he went and filled his depokote finally and the hospital also gave him valium to calm down, maybe his phyitrist will switch out the xanax for that, or klonipin which is his happy pill, but he doesn’t like that because he says it makes him too happy and nice, fine by me but I’ve seen what it does, something makes him mad, he knows it, but can’t get mad which burns him even more, then he won’t take it and all those things that made him mad that he couldn’t get mad at end up exploding into one. at any rate, meds in him then a valium for me and a good night sleep, and it looks like today is a better day, and the sun is out which always makes me better. Sorry for venting here, but it does feel good to let it out and know that here the people that read will totally understand, and like I said I’m luck enough that this doesn’t happen very often. Sorry for such a long comment, next time I leave one, I’ll leave you with our drug interaction story which looking back on is rather funny but not so as it was happening. and as always Hope u guys are hanging in there, your family is ALWAYS in my thoughts. Dara

  3. Hi Michael. I love the idea of your village project. Although I’m not a psychology major, just finishing up my bachelors in English and Creative Writing, I really wish there was something that I could do to help. I’m a firm believer that no matter what disabilities may plague them, children are still children and must be entitled to the same joys and learning experiences that others their age are privy to. If there is any way that I could possibly help, I’d love to know.
    While no two Schizophrenics are the same, I was wondering if maybe the Village Project could incorporate adult Schizophrenics. Many adults with this condition have a decent degree of independence, and I wonder if it would benefit Jani and other children to interact with them. It might be beneficial for them to be exposed to someone older who has personal experiences with the same disease. While I’m sure that most of these adults did not develop Schizophrenia during childhood, talking and spending time with them might open yet another door of hope.

    Note from Michael: We are in contact with Elyn Saks, the professor of law at USC who suffers from schizophrenia and wrote the book “The Center Cannot Hold.” We see her about every three or four weeks. We also have others who experienced schizophrenia who are in professional positions. However, the Village Project itself will only focus on children. Obviously we will have transitory programs so they will have assistance as adults.

  4. Hi there: What a wonderfully perfect analogy. Not sure what else I can say – it’s dead on. I hope the interns are doing ok – sherry seemed a bit down last weekend.

    I’m walking in both Milwaukee and Chicago’s NAMIWalks. So far Tim’s not sold on the idea, we’ll see – my mom is walking with me in Chicago.

    Chrisa

  5. I can certainly understand why you would need to vent unimpeded. Too, I used to be unable to read my own academic papers. The thinking was so difficult it was too hard to think about how I am not as smart as the ideas deserved.

    I don’t think of myself as morally superior to anyone when I think that to do a bad thing while psychotic is still my act and to have done a bad thing. I don’t completely distance it as something I am not responsible for, and not because I wasn’t sick enough, or didn’t lose insight into my mental state in the grips of another thought.

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