Thoughts on the Aurora shooter

So it's happened again.   Another young man, armed with four weapons and 6000 rounds of ammo, all of which were purchased legally, has inflicted unspeakable pain and suffering and terror on innocent people who were simply living their lives.  As yet, the shooter, James Holmes, is an enigma.  Initially I was convinced that he was a sociopath, i.e., not someone with an Axis I major mental disorder, but rather someone with an Axis II personality disorder.  I thought that someone with schizophrenia would not have the cognition or volition to carry out such an elaborate plan, based on my own experience with Gabriel.  But after seeing Holmes in court, with his flat affect and spacey look, I began to think that he could, in fact, have schizophrenia or bipolar disorder.  And I began to feel very, very sad.

That sadness turned to despondence as I read comments on various news sites and Facebook.  All too many people expressed the opinion that we should just skip the trial and "fry" him immediately.  So much for that pesky Constitution.  Others fantasized about all sorts of vicious torture and mob violence that should be inflicted on him.  Most were dismissive of the possibility of a severe mental illness as a cause of Holmes' horrific acts.  Some felt he was just faking in court.  Most seemed unable to believe or comprehend that something like schizophrenia could drive someone to do these things.  And some didn't care, making reference to the need to "put down a rabid dog."

Naturally my thoughts turned to Gabriel.  As I mentioned before, he would never have the cognitive skills nor the motivation to complete such a complex plan.  When he is actively psychotic, he is so nonfunctional that he can't even fix himself a sandwich or put his shoes on or answer the simplest question.

Gabriel is also the most nonviolent person I've ever known.  I could  count on one hand the number of times that, as a kid, he hit or even pushed another kid.  Even when other kids did mean things to him, like intentionally jumping on his arm when he was on the ground and breaking both bones in his forearm, Gabriel never sought revenge.  He only got his feelings hurt:  he simply couldn't understand why someone would be mean.

But, in spite of Gabriel's 26 years of nonviolence, I can imagine schizophrenia causing him to do things in a psychotic state that he would never do when he's in touch with reality.  When he had that 5 month long period of active psychosis in 2008-09, I realized that maybe he could reach that point.  That was when he told the doctor at the psychiatric ER that he thought about stabbing himself in the head to make the voices stop.  The doc told me to hide all the knives and sent Gabriel back home.  I hid the knives.   He was awake for days on end, and he stayed up all night in the living room, watching TV.  I could hear him from my bedroom, saying things like,  "Fuck you, bitch!" and "Die, bitch!"  It scared the crap out of me, until I realized that he was talking to the mafia guys who were threatening him.  (I still told Marcus to lock his door at night and I locked mine, too, and I slept with one eye open.)  I noticed him staring intently at me while we were eating lunch one day.  I asked him,  "When you look at me, what do you see?"  "Sometimes I see an alien," he answered.  Eventually he started trying to punch and kick the mafia guys  (I'm glad I didn't look like a mafia guy), and that's when the hospital finally admitted him.

It's also worth noting that, when Gabriel had his first psychotic break, at age 20, its onset was so fast it took my breath away.  Over a weekend in July, he was morose, and seemed worried about some joke I made about the police.  By Monday evening, he was convinced that someone was trying to kill him and that the police were in the room upstairs, listening to everything we said.

So if James Holmes has had an onset of schizophrenia, I can't help but feel some compassion towards him, in spite of the terrible things he did.  I know it's not a popular way of thinking.  People think I'm making excuses for him or trying to absolve him of responsibility.  Some think I'm "rooting" for the underdog.  I'm doing none of those things.  It's just that once you've lived with schizophrenia, and you've seen a loved one suffer because of it, you can't help but understand in a way you perhaps wish you didn't.

Justice for Kelly Thomas!

On July 5, 2011 the police in Fullerton CA got a call that someone was breaking into cars near a transit hub.  Officers Manuel Ramos and Jay Cicinelli arrived on the scene and saw a homeless, schizophrenic man named Kelly Thomas, who frequented the area.  Since this was the officers' regular beat, they were familiar with Thomas and surely knew that he showed signs of a serious mental illness.

The officers searched Thomas' backpack and found items that they decided weren't his.  They ordered the schizophrenic man to sit on the ground with his legs in front of him and his hands on his knees.  Officer Ramos snapped on a pair of latex gloves, held up his fists, and snarled,  "Now you see my fists?  These fists are getting ready to fuck you up."  Kelly Thomas, confused and frightened, attempted to move away.  Ramos took out his baton, and Thomas held up his hands in a defensive posture, with palms out to deflect the blows.

Ramos and Cicinelli beat Thomas with their batons, tasered him 5 times in the course of the beating and beat him 8 times in the face with the Taser gun.  Four other officers arrived and joined in.  Bystanders were not close enough to visually record the beating, but their camera captured the horrific sounds of the murder:  the zapping of the Taser and Thomas' agonizing screams and his repeated calls,  "Dad...Dad...Dad!"  The officers continued to beat him, even after he was still and making no further sounds.

Kelly Thomas was taken to the hospital.  When his father, a former sherriff's deputy, arrived at the hospital and came to his son's bedside, he could not even recognize his son.

Kelly Thomas died five days later.

His father and the community demanded an investigation into the indefensible murder.  Last week, the DA of Orange County announced that Officer Ramos had been charged with second degree murder and involuntary manslaughter.  Cpl. Cicinelli was charged with involuntary manslaughter and excessive use of force.

This story has been so disturbing to me.  Of course, many, if not most, citizens would be outraged by the deadly actions of a couple of rogue cops.  Very few parents could hear those heart-rending screams of "Dad" without feeling empathy for this grieving father.  And for those of us who are parents to sons or daughters who have schizophrenia, this is often our greatest fear...that someday our child will have a confrontation with police when he/she is actively psychotic...a confrontation that could end in tragedy.

I remember that many years ago, long before the onset of Gabriel's schizophrenia, there was a terrible incident in the middle class neighborhood where I worked.  A mother was having trouble with her adult schizophrenic son, and she called the police for assistance in getting him to the psychiatric ER at the county hospital.  When the police arrived, the son was in the front yard, wildly waving his arms.  They thought he was brandishing a weapon, and they shot him dead.  That incident stuck with me, and often comes to mind when Gabriel is having trouble.

During Gabriel's first psychotic episode, he had been furloughed from the county hospital, but by the next day, it was obvious that he was having difficulties.  He was outside, when the phone rang.  It was the local police department.  They told me that Gabriel had called 911 and told him he was smoking.  Of course they thought he was making a prank call and called to see what was going on.  This was the first and only time that the police in our little burg showed restraint and didn't show up at our house to bully or harass us.  Thank God they didn't.  Gabriel told me later, when he was lucid, that he saw helicopters chasing him and people trying to kill him, and he called the police and told them he was smoking in an attempt to get the police to come.  Of course, if they had come, the situation might have taken a turn for the worse, as paranoid as Gabriel was.

And then there was the five month period when Gabriel was very, very psychotic in 2008 (after the doctor monkeyed with his medications).  He laughed and paced 20 hours a day.  He stared at his aliens and the members of the Mafia who were threatening him.  He began to curse at the mafiosos, and punch and kick at them.  Most of the time he stayed in the house, but sometimes he went out in the front yard.  I was SO worried that neighbors would see him out there, laughing hysterically or punching at thin air, and that they would assume he was high on drugs and would call the police.  I was still working at the time, and it was so stressful to have to leave to see patients, not knowing what he would do.  I don't know for sure what would have happened if the police had come, but I think it could have turned out very badly, as paranoid as he was, and as confrontational as those police officers were.  When he is that psychotic, he is unable to answer the simplest of questions and unable to understand and follow the most basic directions.  I have no doubt that those officers, lacking adequate training, would interpret his response as defiance and resistance.

I hope Ramos and Cicinelli are found guilty of the most serious charges and that they are given the maximum sentence.  But beyond that, I hope that police departments in every city will strive to improve their training for all officers on how to best respond to people with serious mental illness.  And I hope that they will always try to improve their psychological screening process for their officers, so that they can weed out officers who have a tendency towards such violent and aggressive actions.

When the world out there wants an explanation...

When we are in our normal routine, everything seems pretty much, well, normal.  After 20+ years together, I know without having to think about it what the boys' deficits are and what I need to do to accommodate for them.  I know that if I'm standing to Marcus' right, he can't see me and if I don't speak or I'm not ready to spring out of the way, he will run right into me.  I have learned not to think out loud around Tevis, because if I casually mention that one of these days I need to take the dogs for their shots, he will ask me 30 times a day, every day,  "When are you going to take the dogs for their shots?"  And I know that if I tell Gabriel something, more than likely I will have to repeat it, maybe three, maybe five, maybe ten times, because he didn't understand what I said in the first place or because he has forgotten what I said 30 minutes later.  That's just how it is.  There is no need for explanations.

But then there are times when the world out there demands an explanation, when it robs us of our sense of normalcy.  I remember that whenever I had to take Marcus to the eye doctor or to the Commission for the Blind to discuss services he needed, he grew ever more uncomfortable and morose the longer we sat there discussing his visual impairment.  Day in and day out, as he went about his daily activities, he could almost forget that he was legally blind, but those appointments always reminded him, like a slap in the face.

Last Thursday, when the mail came, I saw that there was a Jury Summons for Gabriel, and I knew that this was going to be an uncomfortable situation.  For some reason, at the age of 59, I have never been called for jury duty, but almost every one of my kids has been.  When Marcus got a summons in Texas, I just sent it back with an explanation that he was unable to read and write, and he was excused.  I never said anything to him about it, because his inability to read is a real source of grief for him, and I felt he didn't need his nose rubbed in it.  Gabriel also got a jury summons in Texas, at a time when he was actively psychotic.  Again, I just sent it back myself, with an explanation that he was schizophrenic and hears voices.  The court was more than happy to excuse him.

But the court here wants a note from a doctor in order to be excused for a physical or mental disability.  Given the push for disability rights, I am not even sure that the doctor would automatically write a note excusing him simply for being schizophrenic.  I considered the idea that maybe he should just go, banking on the probability that he would not be selected.  But I could not knowingly put him in that situation.  He almost always listens to his Walkman radio, to drown out the voices, and without the radio in the court, he would probably go to sleep and be found in contempt or something.  And Gabriel has regressed so much cognitively since the onset of his schizophrenia, that I know he is not mentally capable of attending to, processing, and understanding testimony.  I debated with myself how best to say this, tactfully, to him.  So I showed him the summons, explained it, and asked him gently,  "Do you think you'd be able to concentrate well enough to be on a jury?"  I could see him debating with himself as well, and he finally said that he thought he would see if the doctor would give him a note "because of the voices."  Over the weekend his anxiety level was sky-high over this.

Sometimes I'd like to tell the world out there to mind their own bizwhacks...

Revisiting Tucson

From that dark day in Tucson, I have been personally touched by the shooting of Gabby Giffords.  Like most Americans, I hoped against hope for her survival and have cheered her amazing progress in rehabilitation.  But I also felt a personal connection to the events because of my sons, one of whom had a traumatic brain injury like Gabby, the other of whom is schizophrenic like the shooter Jared Loughner.

Like Gabby, my son Marcus had damage to the left side of his brain, resulting in language difficulties and right side weakness/spasticity.  And, like the congresswoman, he demonstrated the same drive and motivation to overcome his disabilities.

Yesterday I woke up and checked Facebook, and the first thing I saw was the new photos of Gabby, the first since the shootings.  The sight of her smiling face brought tears of joy and relief to my eyes!

With the release of the photos, little notice was given to the other news from the shooting.  It was reported on Saturday that Jared Lee Loughner's lawyers had once again filed a request with the court that they be notified if the hospital where he is being treated attempts to medicate him.  Even though he is so psychotic at this point that he cannot even cooperate in any way with the lawyers, they argue that the medications pose a risk to him because of their side effects and that they would hamper his ability to cooperate with them in his own defense.  They also argue that, since he is so out of touch with reality, even if he agrees to be medicated, he cannot actually give informed consent.

I found this article so disturbing!  It is quite obvious that the only goal of the defense attorneys is simply to keep Loughner out of the courtroom indefinitely.  They are acting in his best interests only as a defendant, not as a person.  Making sure he stays in a severe psychosis, unable to communicate or to know what is going on outside of his head, is in his legal best interests, but I think most people would agree that it is not in his best interests as a person.  I think it is very unfortunate that Loughner does not have a legally appointed advocate, who would be able to act with legal authority in Loughner's  personal best interests, as a person who is very, very ill, rather than as a defendant.  I know that most people don't really care about what would be best for him; they only want him to regain his faculties so he can go to trial.  But, even though he is a person for whom it's hard to feel any sympathy, I can't help but feel some for him, because I know the anguish, the torture, the hell, that Gabriel lives through when he is actively psychotic.  And I know that Jared Lee Loughner must be living in that same hell.

So it was a weekend of both good and bad news relating to the Tucson tragedy.  I hope that Gabby is soon able to return home and continues her remarkable progress.  And I hope that someone will do what is right for the shooter.

Daring to hope

Gabriel had an appointment with the psychiatrist today.  He remarked on how much quicker we got in and out, compared with our appointments at MHMR in Texas.  That made me think of the many differences in the services he gets here in St. Louis, compared with those in Texas.

At Texas MHMR, we usually spent 3-4 hours, to get his blood work, meet with a case manager who did nothing but mechanically fill out the required paperwork, and see the doctor for 5 or 10 minutes.  When Gabriel entered that doctor's office, she almost always turned on a fan so she wouldn't have to smell him, and she often took personal phone calls while she met with us.  I had begun reading about the Clubhouse movement, which is a worldwide movement with mental health clubhouses in 30+ countries from Japan to Israel to Poland to South Africa to Kosovo, but whenever I mentioned the need for a clubhouse to the staff at MHMR, not a single one of them had ever even heard of a clubhouse.  Getting his prescriptions, one of which is very strictly controlled, often required 3 trips to a pharmacy downtown, including a wait of an hour.

Here in St. Louis, mental health services are provided by Barnes Jewish Behavioral Health.  Today Gabriel got his blood work, met with the psychiatrist for 30 minutues, worked with his case manager for another 30 minutes, and turned in his prescription at the on-site pharmacy (we'll receive the medication in the mail on Tuesday), and we were in and out in an hour and fifteen minutes.  The nurse who does the blood work knows Gabriel by name on sight.  The doctor actually talks to him, asking probing questions about his symptoms, his activities, his goals.  She tries to educate him about schizophrenia and related health issues.  Gabriel told her today that he thinks he's doing better, because he only thinks about the Russian mob trying to kill him once every hour, rather than every five minutes.  He was able to explain that his hallucinations seem real, like dreams, when they're happening, but he can understand that they're not real.  Then he worked with his case manager on practical skills, like keeping a log of his blood sugar readings.

As we left, rather than feeling defeated and hopeless, as I often did when we left MHMR, I dared to feel hopeful, dared to feel that Gabriel isn't just spinning his wheels any more.

The cloud of the future

Today Gabriel had an appointment with the nurse practitioner to recheck his diabetes medication and glucose levels.  The clinic is in the same location as his mental health provider, and, as we sat in the waiting room, his case manager came in.  She came over to Gabriel and began asking him if he brought his record of blood sugar levels, did he bring a list of his medications, etc.  She had to take care of another matter, but she told him she would be back.

I knew that she planned on going back with us when the nurse called him.  Unexpectedly, I felt a wave of resentment rising within me, and it took me by surprise.  After all, isn't this what we moved up here for:  to obtain the support services that Gabriel needs?  Why did I have this almost visceral response?  As I thought about it, a dark cloud seemed to skim across my mind.  In those few dark moments, I saw a future without me, Gabriel on his own against the world and his schizophrenia.  That vision was so vivid, so distressing, that I had an unsettled feeling during the rest of the appointment.

This is the worry, the sometimes anguished distress, that haunts parents of children with developmental disabilities or severe mental illness...what will happen to my son/daughter when I'm gone?  We search for programs and support services, we consider residential options, we draw up wills and set up trusts.  But, especially if our family is not a close-knit one, we fear that eventually our adult child will be "cared for" only by people who are paid to be there.

A quarter of a century

Yesterday was Gabriel's 25th birthday.  As usual, we just celebrated as a family, going to Chili's for supper and then having cake and presents at home.  Gabriel wanted a red velvet cake, which is sort of a family tradition dating back to Jesse's childhood.  My mother, understanding how hectic my life was as a single mom to so many kids (not to mention the sheer number of birthdays we celebrated!), started offering to buy a cake for the kids' birthdays.  Living close to the Red Oven Bakery in Arlington, she always bought the cakes there, and usually got their specialty:  red velvet cake.  But apparently red velvet cake is more of a Southern thing, and most bakeries here don't make it.  I finally decided to make it myself, and it turned out pretty darn good, if I do say so myself!

Of course, birthdays are always a time for a bit of reflection.  I have to say that this year Gabriel is doing pretty well.  At least he's doing better this year than he has since his 20th birthday.  It was 3 months after his 20th birthday that he had his first major psychotic break.  Since then birthdays have come and gone, and he has slept through them, been hospitalized with blood sugar at 850 on one, has generally been spinning his wheels as life passed him by.  But this year is different.  I can look back over the last year and see that he has made progress since his last birthday.  He goes to the Independence Center every day, where he is around other people, has work that he does, has a reason to get out of bed.  He has better medical care up here, and adjustments to his medication have lessened the intrusiveness of the voices.

So, Happy Birthday, Gabriel!  May you continue to build a meaningful life for yourself...

Marking time

I have to admit that I rarely have a moment when Gabriel's schizophrenia does not weigh on my mind. I suppose that's because, relatively speaking, its onset has been recent. I mean, I rarely think about my other kids' disabilities. Since they have been disabled from the day I first met them, indeed from the day I first heard about them, their cerebral palsy or spina bifida or dwarfism is just a given. Yes, occasionally I still think about what their lives would have been like if they hadn't had a disability, but I can set those thoughts aside. But with Gabriel's schizophrenia, it's different. I know that's because the disease has taken so much from him. The Gabriel I knew for 20 years---the impish, vivacious, charming child---is gone, and in his place is a moody, withdrawn stranger, without affect or motivation. Sometimes that stranger makes me uncomfortable, sometimes he gets on my nerves, sometimes I feel so sorry for him. And of course I feel guilty for feeling that way.

Most of the time the pain is a dull ache, but sometimes it pierces my heart. One of those piercing moments occurs almost every week. Most young adults mark time by referring to their age or what grade they were in when something happened. For example, "Boyz II Men was my favorite group when I was in 8th grade," or "Remember when I was 13 and we went to Padre Island?" But Gabriel marks time in a completely different way that breaks my heart. He'll say, "I remember that time we went to Burgers Lake, before the voices started."

Scapegoat

Ah, so now it begins: the scapegoating of all people with schizophrenia. This evening I had been to visit Gabriel on the locked psych ward where he has been for the last week. When I came back home, I checked the updates on Facebook and read the following comment:

"Simple soon as they sign up for SSI and claim a mental illness as the reason lock ' em up, restrain them, and medicate them thru shots or iv's. They wanna be state sucks let 'em live in a state hospital!"

I was spitting mad!

First, I thought of all that Gabriel has suffered during his 24 years. In the younger grades, he struggled in every area. Because of his OCD, he almost never turned in an assignment, because after he worked on it, it wasn't perfect, so he would wad it up and start over again...and again and again and again. Even in kindergarten he was acutely aware of his difficulties, and he would come home and ask me, "How come Matthew can spell hard words and I can't?" In primary grades he got invited to lots of parties, because it was the social custom to invite the whole class so no one's feelings would be hurt. In the upper elementary grades, that custom fell by the wayside and the invitations ended. He had Tourette Syndrome, with a number of facial and vocal tics, and that certainly didn't help him fit in. In middle school he was hospitalized twice, for a total of five months, with severe anorexia. When he was admitted the first time, he weighed 69 pounds and, in the words of the doctor, looked like he had been in a concentration camp. During the second hospitalization he was first diagnosed as psychotic. When he was 20, he had his first major psychotic episode, and was diagnosed with disorganized schizophrenia, the type with the worst prognosis. He spent 7 months in the state hospital. The disease robbed him of his cognitive skills, his social skills, and his vibrant personality. When he has a setback, the voices are unbearable, and once he said he thought about stabbing himself in the head to make them stop. And now here is a person who says he should be treated as an animal, locked away and restrained and drugged. Here is a person who sees him as nothing more than a parasite, a "state suck."

And then I was angry on a political level. This person, needless to say, is a right wing conservative. These are the people who castigate the mentally ill because they won't stay in treatment, but at the same time, refuse to adequately fund mental health services. These are the people who don't want "those people" on the streets, in view, but begrudge them the measly SSI payment that puts a roof over their heads. These are the people who don't want the government meddling in their own lives in any way, but they think it is proper for the state to lock up people for the "crime" of being ill. In short, these are the people who are bald-faced hypocrites.

This, my friends, has been a terrible weekend. Apart from the tragic loss of life and grave injuries that will change the victims forever, it has exposed America for what it has become. This is the America that the hatemongers have created. They have made their bed, but unfortunately, we all sleep in it.

Words have consequences

When I heard about the shootings in Arizona today, I thought that surely the vast majority of reasonable people would wake up and recognize that the climate of vitriol and violent rhetoric that has engulfed this country in the last two years contributed to this tragedy. I was wrong. Many of my conservative friends assert that this was just the work of a disturbed mind and that the anti-government rhetoric, the talk of "second amendment remedies," the use of violent imagery in our political discourse had nothing to do with it.

Since my son has schizophrenia, which it appears the shooter could possibly have, this tragedy has made me think a lot about what could ever push him to commit a crime like this. Fortunately Gabriel's delusions and paranoia usually involve the Russian mob and the Mafia, not the government. But I got to thinking...what if our political extremists were calling Obama and the Democrats mobsters instead of socialists? What if Obama were pictured as a Mafia boss on all those protest signs, instead of Hitler, Stalin, or Lenin? What if the right wingnuts were scaring the public about mob hits, instead of re-education camps? And what if talk of using "second amendment remedies" or "hello Mr. Smith and Mr. Wesson" led him to go buy a gun? I have no doubt that if that rhetoric was bombarding him constantly, it could push him over the edge.

I whole heartedly agree with Sheriff Dupnik of Pima County AZ: " Let me just say one thing, because people tend to poo-poo this business about all the vitriole that we hear inflaming the American public by people who make a living off of doing that. That may be free speech. But it's not without consequences."

On the locked ward again

Reprising a poem that I wrote during Gabriel's first major psychotic episode...it still rings true today as he once again finds himself wrestling with the demons behind locked doors.

On the locked ward

They walk.
Through pale green halls
They walk.
Perhaps they flee their demons
Or maybe they pursue them.
Pacing, pacing back and forth,
Pacing racing thoughts,
Moving to define
The boundary between themselves
And the world in which they move.

They watch.
With haunted eyes
They watch
A scene unseen by others.
Others can only see the reaction
On their faces:
Bewilderment, horror,
Amusement, interest.
The silent movie plays
For an audience of one.

They listen.
To compelling voices
They listen.
Voices that will not be still
Cajole and threaten,
Command and seduce,
Demanding to be heard
Through their own resounding echoes.

Craving conversation

Human speech is like a cracked kettle on which we tap crude rhythms for bears to dance to, while we long to make music that will melt the stars. Gustave Flaubert

There are times when I would give anything for a normal, free-flowing conversation. I spend most of my time with my family members who have some type of language disorder.

There's Marcus, who suffered a severe traumatic brain injury at the age of 2. The left hemisphere of his brain was so damaged that now, according to his last CAT scan, there is very little brain tissue left on that side and it has been replaced by cerebrospinal fluid. So I guess it's a testament to the plasticity of a young brain that his right hemisphere took over the language responsibilities. He is able to understand a great deal of what he hears on the news, especially with the extra visual input of the video, and sometimes he surprises me by some fairly sophisticated vocabulary he uses. But his ability to pronounce words is impaired, as is his grammar. He has difficulty with memory and often fails to understand something simple I'm trying to tell him. He also has a habit of using a very repetitive, circular type of conversation, in which he basically says the same thing in about a dozen slightly different ways...a habit that really tests my patience at times.

Gabriel, as I have mentioned before, tends to obsess on certain topics like the Mafia, the Queen of England, rappers and gangsters, etc. His hebephrenic schizophrenia also causes him to be on the silly side, so he'll make really silly jokes over and over again. For example, he says, "Coolie (the dog) was making gang signs," and he thinks this is hilarious. He jumps from topic to topic, in a schizophrenic stream of consciousness. His memory skills are very poor, so he asks the same questions he asked yesterday, or even earlier in the day, because he has literally forgotten the answer or that he even asked the question before. I try to engage him in more normal conversation, but often my efforts are met with a total lack of affect and/or interest. When he's quoting someone, for some reason he assumes a very high pitched voice, and has taken to flapping his hands when he's talking as well.

Tevis, who spends most weekends with us, is a different challenge. He has the WORST stutter/disfluency I've ever heard, repeating the beginning sound or word or phrase up to a dozen times. He has a certain amount of apraxia and a very nasal quality to his speech, so he is pretty hard for most strangers to understand. He also asks questions repetitively, ones he has asked a hundred times and knows the answers to. (I personally think special education teachers inadvertently reinforce this, as they are constantly asking their students questions to test their skills and knowledge, rather than simply conversing with them.) And he thinks he has to be talking about 55 minutes out of every 60! But, to Tevis' credit, although he has a measured IQ of about 40, he has a lot of common sense, is very observant, is tuned into other people's feelings, and has picked up a lot of information he's heard. For example, when I told him that we might move to St. Louis, and they have more snow up there. "You need to get a car with 4 wheel drive, in case we get stuck in the snow," he opined. In some ways, he's more functional than Gabriel, which makes me very sad.

And then there's my mother. I remember the days, when the kids were young, that I used to call her every day, just to talk, blow off steam, get advice. As she got older and a little more cranky, I called less often, as I wanted to avoid her complaints. What wouldn't I give now to have a normal conversation with her, complaints and all? Her stroke last year left her with Wernicke's Aphasia. She understands what is said to her, and knows what she wants to say, but much of what she says comes out as gobbledy-gook or the Jabberwocky of Lewis Carroll. I call her and ask how she's doing. She can now answer automatically, "Oh, pretty good." But then she continues, "I was just lasting here frankly on the clasp. The man was spelling the sepler today, and it was something, but we got it done." Somehow I understand that she is sitting on the couch and that her personal care aide came and did the laundry, which there was a lot of. I often think of that scene in "Saving Private Ryan," in which the young medic, sitting in a darkened, deserted ruin of a church, talked about how his mother would come home from the late shift and would want to talk with him. "She'd stand in the doorway looking at me... and I'd just keep my eyes shut. And I knew she just wanted to find out about my day - that she came home early... just to talk to me. And I still wouldn't move... I'd still pretend to just be asleep. I don't know why I did that," the young soldier says quietly, with pain and regret in his voice.

Even when my other kids lived at home, it wasn't any better. I had the "cocktail party" speech that is a feature of Non-verbal Learning Disability and hydrocephalus/spina bifida. I listened to the circular reasoning of Fetal Alcohol Effect. I tried to tune out the insults of a sociopath. I was bombarded with the emotional abuse and the narcissistic monologues of a borderline personality. And I had to use intense concentration to understand the language of severe spastic/athetoid cerebral palsy.

When I was working, I used to have the opportunity for normal conversation sometimes. Now, I didn't get much of that from my co-workers; the "Me-generation" doesn't engage in much give-and-take with anyone twice their age, it seems. I did enjoy conversation with some of the parents of my patients, especially those who were closer to my age. But we were under instruction from the agency to refrain from conversation about our personal lives, so I felt some restraint in my interactions. Some parents....well, let's just say there wasn't much to talk about with them, like the mother who complained when I dared to take a whole week off when my dad died. But now that I'm not working, my interaction with others outside my family has been limited. OK, I admit it, I'm something of a hermit, though not entiredly by choice!

To my readers who have children who are non-verbal, you might be thinking, "What is she belly-aching about? At least her kids are able to talk!" I know that I am very lucky that all of my children, even the ones who have very significant disabilities, are verbal. It's just that sometimes a little normal conversation would "melt the stars."

The dark cloud to the silver lining

For the last couple of days, we've had the pleasure of Gabriel's company during our normal waking hours. Usually he wakes up after midnight, stays up for only 6 or 8 hours, and goes back to bed in the morning. Needless to say, this is not a very good schedule for him, as it limits his socialization with the family, his activities, his exercise, and his regulation of his diabetes. But it has been a very difficult pattern to break. But since he got up for an early Thanksgiving lunch at my mother's and stayed up the rest of the day, he actually managed to stay on a more normal schedule for two days. I was feeling pretty good about this, and tried to give him some positive feedback ("great to spend some time with you, do you like getting out more since you're up during the day, etc").

But last night I realized that this might not be as positive a development as I had thought. We went out to eat and Gabriel was fairly morose and withdrawn. During the day he spent most of the time with his headphones in his ears, with his Walkman radio blasting. And in the evening, as I watched TV and worked on the computer in my room, he came in and hung around, talkative at first (more gangster and Queen of England talk, along with other topics). But then i realized that he was sitting silently on the daybed in the room, staring at a fixed point on the floor, then sitting miserably with his head in his hands. I asked if he was OK and he said yes. But then I got more specific and asked if he was seeing things or hearing voices: affirmative on the former, negative on the latter. Questioned further, he said they weren't scaring him or threatening him. But he stayed up until 3 or 4 AM, and that wakefulness often indicates a certain amount of agitation or fear of being by himself. I went to bed with that familiar knot of apprehension tightening in my chest.

Troubling signs

Oh, no, please...not again! We've had about nine blessed months of relative calm, at least in regards to Gabriel's schizophrenia. After our five months of hell last year, when the doctors started messing around with his medication, he's been functioning fairly well, thanks to his Clozapine. Well, I do use the term "functioning" fairly loosely. He still has major cognitive problems, he sleeps about 18 hours a day, and his hebephrenic silliness seems to be increasing. But the delusions and hallucinations have been kept at bay, and that's something.

But I'm seeing troubling signs that things may be deteriorating. Now Gabriel has always been somewhat quirky and obsessive about certain subjects. Over the years his consuming topics of interest have been fast food (through severe anorexia and back), video game systems (he rarely plays video games but loves to discuss the pros and cons of all the systems that have come out over the years), the stock market, Men in Black (the source of many of his previous hallucinations of aliens), etc. Now his favorite topics of conversation (monologues) are the Mafia and the Queen of England.

The Mafia has been a frequent component of previous delusions. During his last decompensation, fears of aliens suddenly gave way to fears of the Mafia trying to kill him. Now, with daily exposure to Sopranos reruns, he talks frequently about the Mafia. Do you have to be born into it, does it have a lot of money, isn't it different from the Mob, and on and on. At this point, it doesn't seem to have devolved into real delusions, but when he ruminates on a subject like this, one that has a threatening element, it can be a troubling sign.

His other obsession is the idea that his birth mother is really the Queen of England. This one seemed to start as a joke, and still retains some of that playful quality, but it seems to taking hold as something of a delusion. He asks how many police and body guards would accompany the Queen if she came to Forest Hill to visit, and jokes that someone is at the door asking for John X (his name at birth) as his birth mother, the Queen, wants to meet him. I really have to bite my tongue to keep from blurting out, "No, actually, your birth mother was Tina Turner!" (That was HER delusion...)

At this point, I'm hoping that these ideas are just manifestations of Gabriel's quirky thinking and not the beginnings of genuine delusion. I'll bring them to the doctor's attention at his next appointment. Meanwhile, though I feel guilty admitting it, sometimes it's a relief that he sleeps during so much of my waking hours, as the obsessive monologues wear on my nerves at times. I'm looking into some cognitive remediation training, but more on that in a later post.

AWOL

I've been AWOL from my blog for so long, I figured I'd give everyone an update. I'm still on long-term disability (it's been almost a year now) due to my spinal problems. I haven't really had any treatment yet, except for medication, because my cardiologist wouldn't release me for any procedure that required going off my Plavix or aspirin. Now he's released me, and I've consulted with several doctors with a growing sense of frustration. I've had conflicting recommendations (you need nerve blocks not steroid injections, you need steroid injections not nerve blocks, you're not a candidate for minimally invasive surgery, you are a candidate for it, etc). One doctor completely turned me off by seeming to trivialize this problem that has put my life on hold: "Well, you have a little arthritis and a little slippage." (This one told me that the baby aspirin that I take for my cardio problems should take care of my pain!) At two surgeons' offices, I didn't even see the doctor, just the physician assistant. So the upshot is that I'm going to have epidural steroid injections and if they don't provide any long term relief, I will hopefully have minimally invasive surgery. I want relief and I want my life back!

As for the boys, they are doing fairly well. Gabriel hasn't had any major problems since he got back on his Fazaclo. He sleeps too much and seems to exhibit more of that hebephrenic silliness, but the major hallucinations and delusions have been kept at bay, plus he's interacting with us. Keeping his diabetes under control is another story. He has managed to learn how to give himself the insulin injections, but getting him to check his blood sugar regularly or to modify his diet is like beating my head against the wall.

My mother just keeps plugging along. She just celebrated her 91st birthday and is still living at the independent living apartments, with some extra services. With the benefits of an antidepressant, she has become much more sociable, and so is enjoying life much more. I've started taking her out to eat once a week and Jesse goes to do her hair and nails frequently, and she really looks forward to that time together. I consider myself so fortunate that I have this time to spend with her, as it has brought us closer.

I am now a grandmother...Leslie had her baby, a little girl whom she named Hosanna Rachel (Hosanna is Leslie's middle name). As she is unable to care for a baby, Leslie's caregiver has agreed to become the baby's guardian and take Hosanna into her own home, so that she didn't have to go into the foster care system. I have a lot of mixed feelings about the whole situation, but it is what it is.

So, that's the wrap up. I hope to be more regular in my posts...glad to be back.

Update: Ups and downs

Since I've been neglecting my blog for the last few months, I felt that I should give you all an update on Gabriel. When I last wrote about him in January, he had finally been hospitalized after all those months of being actively psychotic and non-functional. At that point the plan was to commit him to the state hospital. But once they had him back on Clozapine (the "gold standard" of antipsychotics), he rapidly improved. Within a week and a half, he was well enough that they were able to send him home from the local hospital. In fact, he's functioning quite well on half his previous dose. It's good to have him back.

On the downside, he spent last week in the hospital, because his blood glucose was sky high (875!). We've had to make considerable changes to our schedule and eating habits, and now he's on insulin injections, as well as oral medications. This crisis was a sobering one for me. I always worry about what will happen to Gabriel when I'm gone, and now this fear has increased exponentially. I know that if Gabriel doesn't have someone to care about him and supervise him closely, the path to life on the streets will be short, and that street life would be deadly for him, given his diabetes and his vulnerability.

I also feel what Martin Luther King called "the fierce urgency of now." I know that at some point Gabriel may not function as well as he does now, so I feel an urgent need to make his life as full as I can while he can enjoy it. So Marcus, Gabriel, and I are going to Colorado over Memorial Day weekend to a family camp at the National Sports Center for the Disabled in Winter Park. There are probably a lot of other things I should be spending my money on, but this urgency of now put the camp at the top of my priority list. Gabriel has never seen mountains and never been on an airplane, so I wanted him to have those experiences. In fact, we haven't taken a vacation in about 13 years. Now that I have the free time, I want to take the boys to see some new places and have some new experiences. We are very excited about the trip and I hope to post pictures and video when we get back.

One minute

I left my camera on this morning and this is just one minute of video it captured. You may find it annoying. You may find it disturbing. You may find it very sad. However it makes you feel, keep in mind that it is only one minute.

Now, multiply that feeling times 60 minutes per hour, up to 12 hours per day, for much of the last 4 months. This is what Gabriel and I have been enduring all that time.

According to the doctors at MHMR, the psychiatric ER, and the inpatient hospital, this is an acceptable outcome for Gabriel. Six months ago he spent his time talking with me, researching stocks, downloading music, playing basketball, going to the movies. No one should have to spend their life like this!

To Gabriel

At the bottom of my desk drawer, tucked inside an envelope, is a small collection of my favorite photos of you. Looking at them, I can’t help but smile. What a little imp you were: exuberant, mischievous, curious, happy.

Today those times seem very far away or as if they belonged to someone else. It seared my soul to hear you say that you sometimes want to stab yourself in the head to make the voices stop. I feel so helpless, unable to silence the voices or chase the visions back into the shadows. I would give anything to give you some peace.

Another night at the ER

Maybe the psych ER should just reserve two chairs for Galen and Gabriel in the waiting room. Monday night we spent yet another night there. Gabriel came to my room about 11 PM and said he needed to go back to the ER because the voices were really bad. By this point, I have become the devil's advocate when it comes to seeking "help" there. Once again I reminded him that when he's gone there before, with exactly the same complaint, they haven't done anything. I suggested that he put on his headphones and listen to the radio to drown out the voices, as he usually does. He said he'd try. A few minutes later, he was back, again complaining that the voices were really bad. As I had heard the doctors ask so many times, I asked him what the voices were saying. "They say they're going to kill me...or that I should kill myself." OK, I knew we had to go.

At the ER, the waiting room was full of folks with very tired faces. Listening to the general conversation, I learned that some of these people had been waiting since 2:00 that afternoon. Sigh...I knew it was going to be a very long night. It was a pretty typical crowd. There were a couple of middle aged ladies with teary eyes, a young woman with her boyfriend, a teenaged boy with his mother who compared experiences in prison with another ex-con in the next seat, an intense young man, a homeless man who apparently had just come to get out of the cold rainy weather to sleep someplace warm. For a while we had to deal with an obnoxious woman who had come with her sister and somewhat elderly father, announcing with dramatic flourish that she had come to commit herself. When she wasn't granted immediate entrance to the exam area and was told to fill out the required registration forms, she started complaining loudly in a string of obscenities. "F-ing fill out f-ing forms? No wonder people f-ing jump off f-ing bridges!!" A staff person at the window told her that they'd get to her in a few minutes. So she went downstairs to smoke a cigarette and, when she returned, she was outraged that they didn't take her right back to the exam area, and her ranting escalated, with her family members hovering around her, trying to calm her down. Far from being sympathetic, I was getting more and more irritated. I'm not a psychitrist, but after all these years of living with my kids and dealing with lots of psychiatric disorders, she struck me not as someone who was suicidal, but as someone who had borderline personality disorder, who was there for one simple reason: the drama. She wanted to stir up her family and she wanted the attention. Sitting there, knowing the severity of Gabriel's problems, I was further irritated that she was demanding to be seen ahead of him and all these other folks who had been waiting up to 10 hours. I finally couldn't stand it any longer and spoke up: "You know, other people have problems, too, and some of these people have been waiting since 2:00." Oops. All eyes were riveted on me, and the woman instantly turned her wrath and her obscenities on a new target. I thought she might come barrelling across the room for me. After several minutes of verbal assault, she left with dramatic flourish, shortly before two security officers showed up.

The rest of the night was uneventful. Several folks finally stretched out on the floor to sleep while they waited for their name to be called. By the time they called Gabriel back to see the doc, it was 6:30 AM and we were the only ones left in the waiting room. The effete resident doctor sat aloofly at his desk, reading through the notes from Gabriel's hospitalization last week. He asked Gabriel about the voices. He asked Gabriel if he felt like hurting anyone else: no. He asked him if he felt like hurting himself. I was stunned and frightened by his answer: "Yes, sometimes I think about stabbing myself in the head with a knife to make the voices stop." Now, a couple of weeks ago, I would have been outraged that they didn't think Gabriel should be hospitalized as a danger to himself or others, but, knowing how worthless the latest hospital stay had been, even in terms of observing his behavior and mental state, not to mention adjusting his medication, I accepted the decision to send him home. I did convince the doctor to try Gabriel on a first generation antipsychotic medication, and, with prescription in hand, we left.

Fortunately, as of Monday, I'm off work on short term disability due to my back problems, so I can observe Gabriel on the new medication. As I write this, he's had 2 doses of this med that he is to take 3 times/day, and he was actually talking with me a bit last night. So there is a glimmer of hope...

49th in the nation, indeed!

In case I haven't mentioned it in the last 5 minutes, Texas ranks 49th in the nation in per capita mental health spending. That should give you an indication of the quality of services in our great state. So I suppose I shouldn't have been outraged by the phone call I got today from the social worker at the psychiatric hospital, informing me that they would probably discharge Gabriel tomorrow.

Now, I went to visit him briefly yesterday. He was talking a bit more, so I asked him if he was feeling better. "No, not really," was his response. Keep in mind that this is the county's public hospital mental health stablization unit, not some private country club facility. Images of Bedlam come to mind. So it's fair to say that no one in their right mind (no pun intended) would choose to be there if they could get out. I would expect Gabriel to say that things were fine just to get back to his cigarettes, music, and fast food. So, if he says he's not better, he must really be having problems, that even HE can recognize.

So, when the social worker told me that he might be discharged tomorrow, I couldn't believe my ears. I asked her if they had adjusted or changed his medication. No, they hadn't. I told her that I would of course come pick him up if they let him go, but that I was quite sure things would be the same as they had been for the last 2 months: hell. I gave her an extensive rundown of the recent history regarding med changes and behavior, just as I had already given it to the ER doctor and the unit nurse.

What I really wanted to ask her was, "What the hell have you all been doing with him for the 4 days he's been there????" It dawned on me that every time I have asked the staff how he was doing, the answer was either (a) I haven't seen him much today, I guess he's been in his room, or (b) he hasn't had any behavior problems. In other words, he has mostly been withdrawn and hiding out in his room, hallucinating and feeling paranoid. Great...big help. At least at home I notice if he's agitated or hallucinating or firing imaginary guns at the aliens.