The Diagnosis (chapter 5)

Wednesday, August 11th  2010

For the first few days we have no diagnosis for Scott. The morning after he was transferred to the Haven he was seen by his medical team. I don’t recall exactly who was on the team, but I know there was at least his doctor, his social worker, a nurse and probably some other mental health workers. 

Perhaps that’s another reason one pays a premium at the Haven – just the concept of having a ‘medical team’ is somewhat reassuring. Contrast this with what happened in the Men's Ward where we had to fight to get just 10 minute's of the doctor's time. Scott’s doctor, whom we will refer to merely as Dr. S., was a lifesaver and real blessing. My husband Chuck and I were still completely overwhelmed and terrified by the situation, but we were moving towards firmer ground and Dr. S. helped to get us there. He spoke with us daily, in a manner that was straightforward and open. He didn’t sugar-coat anything, but his directness, calm demeanor and matter-of-fact presentation helped to make things a little less scary. 

He explained how Scott was still in a paranoid delusional state and still believed that the cars parked outside the hospital were there to watch him. He further explained that in this state, he couldn’t just tell Scott that he was having a psychotic break because it would all just get folded into his paranoid view of the world. Instead he said that he would wait and as the medication started to provide some scaffolding for Scott’s jumbled mental condition, it would eventually crack the door open just enough for Dr. S. to get his foot in.

Far from making a snap decision like the incompetent and unthinking doctor at the ER, the  team at the Haven are monitoring Scott and his reaction to the medications he is being given.

Scott was immediately placed on very high doses of Lithium and Zyprexa. Still he remained very manic and volatile, and so he was also given Thorazine to help calm him at times when the bull started to rage. This usually happened at night, when sleep evaded him and he would get agitated. I recall Dr. S. telling us that if any of us were taking the medication that Scott was on, we would lay down and sleep for a week. But Scott was like a run-away freight train at that point all the lassos that Dr. S. threw up around him were unable to slow him down.

When Scott is manic he gets fixated on sports, usually football. At the Haven, he only wanted to wear athletic clothes with sneakers, and he liked to set the treadmill at an angle of 15 and run on it. In the middle of a conversation or sometimes during a meal, he would drop to the floor and start doing push-ups. This thing with push-ups he had been doing for some time. 

We were so naïve we missed all the warning signs. If we had known anything at all about mania, we would have been tipped off when during a July 4^th weekend party at a friend’s house, he got up at 6 a.m. after only a few hours sleep and decided to jump in the pool and swim laps at great speed. He tried waking all of his friends but they were hung over and told him to go away; saying he must be crazy. He told us all this upon his return from the weekend away, in his ebullient verbose way of that summer, but we merely shrugged and marveled at his high energy.

Yet his high energy eventually degraded to erratic behavior. When the psychosis came, it seemed to us that it came quickly, but in reality he had been able to ‘cover’ it for some time. It was only after he was hospitalized that we started to discover some of the things he had been doing. For example, we discovered in his wastebasket a check for $200 that he had thrown out, but fortunately had not ripped up as he had most of the other things he was getting rid of. We found a hardcover book that he had attempted to burn in the outdoor fire pit (not sure what his thinking process was but the book was the Diary of Anne Frank). He had been practicing self-defense with golf clubs and garden tools, knocking the head off a hoe as he smashed it against a rock. It eventually came out that he thought his father and I were with the CIA and were plotting to have him killed. Therefore he had to cut his ties with his past and be prepared for the attack when it came. My heart hurt to think of him in this dark place. 

And so we waited for a diagnosis. Dr. S. seemed to feel that Scott’s symptoms pointed to a mood disorder, especially once he found out that Chuck’s father suffers from Bipolar Type II, but it seemed that he was still reluctant to rule out schizophrenia. Bipolar has a strong family tie, and if one member of the family has it, it is much more likely that others will too. It is also more common in males.

Dr. S. would eventually settle on a diagnosis of Bipolar Type 1, the more severe of the multiple types. These days they talk about a schizo-affective spectrum and don't rush to label an illness with a tidy label. But the waiting to know what he had and therefore what we could expect as a prognosis was hard, and it was hard to have Scott be so different from his usual self … so ‘crazy’.

Most of us have an inherent fear of madness. This fear stems from our old lizard brains, and is often irrational. We fear snakes and things that move in the dark, or the spider that drops from the ceiling into our hair. We fear people who, in less enlightened times, were labeled ‘lunatics’. We fear the institutions where they were housed. The term ‘lunatic asylum’ conjures up Hollywood-conveyed images of terrifying spaces overflowing with people who have left the boundaries of what we understand to be our fellow humans. We are all tainted by these images. When a person you love abruptly becomes somebody else, somebody unrecognizable, unpredictable and irrational – and you know that the things you say and do are now being interpreted by him through some distorted lens, it is as if the ground beneath your feet has cracked and you have been swallowed into a dark chasm. We lose our foundation and we lose our way. Our minds were gripped by fear,  our thoughts darting about like insects trapped in jar. Chuck and I feared this madness that had claimed our sweet son. We feared it deep down inside our old brains, where a knot of terror sat like a malignant tumor.

Yet we had an unspoken pact to never expose these feelings inside the walls of the hospital. When we pressed that buzzer to request entrance to the Haven, whatever turmoil or anguish we had been engulfed in up to that second, we covered up with a smile and an outwardly calm demeanor. Scott was so volatile, that our primary goal in those long days at the hospital was to keep him calm and to distract him if he looked like he was headed towards an agitated state. Because he had so much energy, it was hard to be indoors with him, but it would be many days before he was cleared to spend an hour or two outside in the courtyard under the supervision of mental health workers. Fortunately they have a ping-pong table at the Haven, and we spent hours and hours playing ping-pong. Both Scott and his father are quite good, and Scott’s greatest glee was to challenge his father to a game in hopes of beating him. Sometimes he would win, but not always.

As the days passed slowly by, Scott started to forge bonds with the other patients. While we had been motivated to move him to the Haven so that he would be with other people his age, it turned out that the patients who had the greatest influence on him were adults. There were two people in particular who played an important role in his path to healing. One was a recovering alcoholic whom I gather had been on a bender and checked himself into the Haven. He was in his mid-forties and I believe he was a successful businessman who may have been involved in commodities. Group sessions took place in the morning before visiting hours, and we came to find that Scott was wholly impressed with what this gentleman had to say, and respected his input. The other patient was a doctor. I do not know why she was in the Haven but she read a lot and was doing research on her condition. When Scott went into crisis in his second week at the Haven, these two would play a pivotal role in helping him at a time when neither his doctor nor his family could reach him.

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The Men's Ward - New York Presbyterian Psychiatric Hospital (chapter 3)

Monday, August 9th  5:00 pm 

Driving back home from the hospital I can’t speak. I am working so hard to hold on, to keep from completely disintegrating at the thought of having checked our son into that psychiatric ward, that I wonder how I will get through the next hour, and the hour after that, and the one after. I had called my sisters from the ER last night after receiving the first doctor’s pronouncement of schizophrenia, and they had offered immediately to come and help. No, I told them … there’s nothing you could do, I will keep you posted. But today, I realize that I am completely dysfunctional at the moment, and it is not fair to rest everything on my husband’s shoulders. I text an SOS to my sisters. Literally. Very quickly I get a text back telling me help is on the way… details to follow. I put away my phone and focus on breathing. 

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Later that day we arrive back at the men’s ward with Scott’s belongings. I don’t remember packing them, nor driving back to the hospital. I remember ... collapsing on the couch in our living room, literally prostrate with the pain of what was happening to Scott. I remember, my husband trying to comfort me, telling me that he promised me our son would be ok, and my telling him not to make promises he could not keep. I remember, hearing my husband, who had gone down to the basement to try to keep the sound of his sobs from me. 

Scott is out cold. A tray of food sits on the table in his room. There is some round flat breaded something, which I expect is meat of some type. There are also round carrots, the frozen kind. It crosses my mind that I think they are called “carrot coins”. I can hardly imagine a less appealing looking dinner. A kind nurse is on duty. She smiles at us and we sit together in white plastic chairs in the hallway outside Scott’s room. 

She tells us that he tried to leave after we did and did not react well to finding the doors locked. He punched the walls and became angry. He is not a small guy, and his fury when he is manic can be intimidating. Apparently they gave him some serious tranquilizers since he is now completely comatose. He did not stir when we touched his shoulder or called his name. She reassures us that sleep is the best thing for him now. It is how the brain heals itself she says.  We tell her about our experience at the ER. Amazingly, she scoffs at the ER doc’s diagnosis. I am only a nurse she says, but I can tell you he is not schizophrenic. This is most likely a drug induced psychosis, or mania from bipolar.

Unbelievable! I am so relieved tears fill my eyes. I may have actually taken her hand to thank her for sharing this insight with us. I walk out of the ward to make a phone call since cell phones are not allowed on the floor. I call my younger sister, who lives in Washington DC and is already en-route to New York. “The nurse says she doesn’t think it is schizophrenia,” I say joyfully into the phone. “It’s most likely bipolar”. My sister pauses, not quite sure how to take the information. When did a diagnosis of bipolar become joyful news she must have wondered. We share details on her ETA and that she should just let herself into the house since we will be asleep before her arrival estimate of midnight. That night, we sleep the sleep of the dead. In all honesty, for me it is an Ambien-induced slumber. My goal was to sleep instantly and not have time to think. 

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The Psychiatric Hospital (chapter 2)

Monday, August 9th 2010 - 9:00 am

We have decided to take Scott to New York Presbyterian Hospital. They participate in our insurance plan, are in White Plains which is only a 45-minute drive from our house, and these things seem like important considerations at the time. 

Returning home from the ER the night before around midnight we are dazed and tired, and decide it is best if we set Scott up to sleep on the sofa in our office. In this way, he would have to walk through our bedroom to leave. We want to make sure he does not drive away, and also we could not deal with getting rid of all the knives and sharp tools in the kitchen. 

Lying down to try to sleep, I face what feels like the worst night of my life. In the morning we will be taking our beautiful child - our handsome, smart, loving, funny, varsity-athlete, straight-A student – to the psychiatric ward. He is no longer the Scott we know and love. He is a manic, volatile, unrecognizable person from whom we have been told to protect ourselves and whom cannot be trusted not to hurt himself.  The pain is so acute and so vast that I cannot find the edges to grasp on to. It hurts to breathe and it hurts to be conscious. 

Amazingly, I eventually sleep. I know this because in the morning, Scott is no longer on the sofa in the den. In his mania, he slept almost not at all, and at some point went to his room. Fortunately he did not try to leave. He agrees to go to the hospital with us. With treat him with kid gloves because his reactions and responses are so alien that we are not quite sure whom we are dealing with, or what to expect. Apparently he is still under the impression that he is going to the hospital so that he can hook-up with a nurse. In his imaginary world where we are all actors to bring about what he desires - he feels he is playing a part, where we all pretend that he needs to go to the hospital because he is not well, but in reality, it is part of an elaborate scheme so he can get laid by a nurse.

We have called, and NY Presbyterian is expecting us. We were given instructions on how to find Admitting.  Still, it has not occurred to us to pack any clothes or toiletries for Scott. Like automatons, we get numbly in the car with him. We try to keep our voices calm and neutral. The hospital will be nice. I think they have beautiful grounds. They may even have a swimming pool … 

He does not notice, but we do, that the doors lock once you walk into Admitting. The process is very long and tedious. He is seen by many people, examined, interviewed both with us and without us. A woman has him fill in the paperwork for a voluntary admission.  She instructs him to write on the form: “I need help” and he complies. 

A doctor eventually shows up. We have been there for several hours already. He comes through one of the locked doors wearing a suit and is brusque, seemingly irritated to have to be interviewing Scott. His pager goes off several times during the short time we are in the room with him and each time he consults it. We feel like an afterthought. Our world is crumbling around us, and he can barely take the time to make eye contact with us. I am silently hoping that this man will not be Scott’s doctor once he is admitted. Scott asks if there is a swimming pool. The doctor is dismissive and tells him curtly that he has bigger things to worry about than the pool. He does not look up as he says this, but continues writing something on yet another form. A little empathy, compassion or even patience would have gone a long way that morning. But we are not to find any from the staff here. 

Sometime later a person comes to escort us to the ward. Since Scott is 18, he will be placed on the adult males’ ward. We are buzzed through various doors and eventually enter the ward. Linoleum floors, fluorescent lights, white plastic chairs, and a TV that is on at the end of the hallway greet us. Doors open to small rooms with twin beds. Some rooms have two occupants and I am happy to see that Scott has been assigned a room that is a single. The men seem to be passing the time by hanging out and walking back and forth in the corridor. They are all much older than our son. Most of them seem to have had hard lives and are not in a good place. Some have headphones, others are talking to themselves. Clearly this is a psych ward and the people are not here because they are doing well but still I am taken aback. So many men, some in hospital pajamas, some in sweats, shuffling up and down the hallway. Scott  will be under continuous observation initially, which is standard, since he is still deemed a risk. 

At this point we realize that he has no clothes or any personal items, so we decide to drive back to the house to gather these things. It’s not that we really thought he was not going to be admitted after he was examined at the hospital, it’s just that we were incapable of thinking further than what was necessary to put one foot in front of the other.  Our doctor had gently told us this morning on the phone that we needed to tell the hospital that we were looking for an evaluation and an admission. Yet in our automaton state we were operating mechanically and not really thinking about anything.

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