Tuesday, April 30, 2013

History (Part V)

Thomas and I drove up to what was considered the best psych hospital in our area and we got out and went inside the E.R. It was completely empty and the lobby alone was more state of the art than our local hospital. They whisked Thomas off before I had finished the paperwork and I was in a panic because he was out of my sight and out of earshot. The whole ride up there Thomas quietly questioned why we were doing this and I tried to explain to him in a gentle way that this hospital would be better for him than the one in our town. At this point in time Thomas didn't believe he was sick at all so I knew that I was on borrowed time to get him situated in a new hospital before he figured out what was truly going to happen for him.

In the E.R. the nurse came in and took vitals and asked some questions. Thomas didn't open up too much but he said enough about his state of mind to warrant the nurse to call in the on-call psych doctor. While we waited Thomas got angrier and angrier and promised repeatedly that he wouldn't harm himself and could we go home now? You see, I had brought him up there under the guise (to him) that he was still a harm to himself and he backed me up to some degree because he stated that he didn't feel safe to be without me for fear he might sink back into suicidal ideation. The fact of the matter was that I had him up there because now I knew about his deeply held delusions and had been told by several people that he was actively psychotic and needed hospitalization. We had sat in therapy days before and he had stated to his therapist and I that he didn't need, nor want, medication for his delusions so hospitalizing him for something he didn't want was a risk.

The on-call psych walked in and started asking Thomas questions and that is when Thomas unleashed. He is not a yeller, in fact he rarely shows anger at all but in that moment he was mad he was there and he let that psych doctor know it. In between telling the doctor that he believed himself to be an enemy of the state (among other shocking things) he told the doctor in anger and frustration that he didn't want to be there. He was the picture of psychotic and I sat there deathly still hoping that the doctor saw what I saw and that they would admit him to the hospital.

It wasn't very long before Thomas was ushered into a white van to be moved to the youth acute ward. Shockingly they had found a bed after telling me on the phone that they had no beds available. What everyone had promised me back home came to pass. They had told me to just get him into the E.R. and a bed would mysteriously open up. They were right.

I followed the white van across the hospital campus and came to this quiet, one-story, set back off the road, building and I parked and followed him in. Thomas was still angrily stating that he didn't belong there but at that point they had decided that he very much belonged there and since he was a minor and I had brought him in in the state of mind that he was, he secured himself in this place without any more doubt from all of us.

It broke my heart as they took him away from me to be examined and given a pair of scrubs and sticky slipper socks. They sat me in a room alone and as I sat there doubting myself and worried and crying for Thomas I waited for the psych doctor to come in.

He came in and started asking me all sorts of questions and I told them what I knew. He wrote furiously as I talked and his questions became very pointed and I knew where he was headed. Nobody up to that point had uttered anything about schizophrenia but after the last 6 months, heck the last 6 years, I realized exactly where the doctor was going with his questions. When he was done questioning me he stated casually that he thought Thomas MIGHT have schizophrenia but that further testing was needed. He promised me that he would do all sorts of different tests and I waited again alone in the room as they brought Thomas to me.

When Thomas walked in the room he was mad. Madder than I'd ever seen him before. The psych doctor helped me explain to Thomas that he needed to stay and that they were keeping him against his will and Thomas stated repeatedly that he didn't want to be there. I choked back tears and continued to try to remain dead calm as the doctor explained their reasoning for keeping him there and then it came time to say goodbye to Thomas.

We stood up and I reached out to hug Thomas. Along with the doctors, I had become the enemy too but he half-heartedly hugged me and stalked off down the hall with the doctor. I walked out of that hospital into the dark, empty parking lot and got in my car. I sat there and sobbed and prayed that I had done the right thing for him and I started the car and drove slowly to the hotel that would be my home for the remainder of Thomas' stay.

Nothing could have prepared me for what would happen the next day and I'm grateful to God that I had no idea about it and as I checked into the hotel and got to my room, I dropped my bags on the floor, sunk into the chair crying and asked myself,

"What have I done to my boy?!?!?"

(My Facebook Page About Schizophrenia)

History (Part IV)

Thomas remained in his first hospital stay for 4 days.
He left the hospital sicker than he went in.
No meds changes, no counseling, no nothing.
What baffled me was that during his intake he was talking about hearing and smelling things that weren't there and yet somehow he was released to me with no changes in care. To be fair, he was a minor on an adult ward (which I was told was pretty much illegal) and I had been raising 14 kinds of hell trying to get information about him so I could arrange help for him and I think I kind of made a scourge of myself. Still, a suicidal, hallucinating teenager proven not to be on any substance other than an anti-depressant, was in their hands and they did nothing but warehouse him for 4 days and dump him out to my very worried arms.
 That was a Monday. By Tuesday he had an appointment with his therapist and all went along fine enough considering the last week and then we came to the end of the session and his therapist said to him,
 "Thomas, I think it's time we change your medication. Maybe add in something to help with your paranoia."
 Dead silence.
 And then,
 "I don't want to take medication for that. I want my paranoia, it protects me."
What ensued was a line of questioning to get to the bottom of that reasoning of his and what transpired from the conversation was a seriously delusional, intricate, shocking story about his world. Personally I was stunned. Rocked to the core. I had no idea that he had held all of that in his beautiful, young, sweet, loving brain. It was in those moments as he told his story that I began mastering my calmness but nothing could have stopped me from staring wide-eyed, eyebrows raised, shooting invisible darts of "are you listening to this??" at his therapist. His therapist seemed so calm and seemed to take this all in stride. He then said to Thomas,
 "Well then maybe we'll at least think about medications for the future."
Apparently so because we all stood up after that and left his office and Thomas and I got in the car. I was STUNNED at what had just transpired. Had his therapist not been in on that conversation?!? Had he not heard Thomas utter those frightening stories of madness?!?
I got home and immediately drafted an email to his therapist asking him what I was supposed to do with what we had just heard. I can't even remember the answer because I was already on the phone to my own psychiatrist asking her what I should do. Bear in mind this woman, my psychiatrist, is a powerhouse. She did her residency at The Mayo Clinic. She knows her stuff. And she's connected in our local medical community and state Adult Mental Health programs. She knows her stuff.
Armed with all of the information she could gather for me and working with the insurance company, I made a call to this top notch hospital hours from me that had a youth acute mental ward. I was told they were the best in the state. I fought my way through 3 administrators and finally got to the psychiatrist that worked on the youth ward. His response?
"I'm sorry, we have no open beds."
 I was at a loss and on the verge of uncontrollable tears. Nowhere in my area was there a place for Thomas to go. Nobody had beds open. So I called my insurance company and the most wonderful (now I consider her an angel) woman told me to pack Thomas in the car and drive him straight up to the youth acute hospital's E.R. and camp out and wait. There would be a bed eventually and in the meantime he would at least be protected within the hospital walls and get an evaluation.
So, on a cold, snowy, blustery afternoon, I packed Thomas in the car with me and began my 3 1/2 hour drive into the unknown praying the whole way that first, we'd make it there alive and second, that when we got there, there would be help. I was scared and alone and hoping for a miracle for my boy.

(My Facebook Page About Schizophrenia)

History (Part III)

I came home from my vacation with my sister and parents to find Thomas in a terrible mood. He was stand-offish and rude and complained about his dad not being very nice and he stormed downstairs. I couldn't figure out what the big deal was. After questioning my husband and discovering there had been an exchange about Thomas getting off of the computer that had made Thomas mad, I decided it was fine to go and grab dinner for everyone.

My sister and I got in the car and headed to Taco Bell and I couldn't shake the feeling that something was wrong. Before I left, Thomas had been on Facebook and had hurridly shut it down when I questioned him if everything was ok so while I was driving, I asked my sister to pull up his Facebook on her phone. When she tried, there was nothing. No page. Just a black screen. She pulled up other friends but couldn't get Thomas's. I started to panic but we were in the drive-thru of Taco Bell so I couldn't do anything but wait. She tried repeatedly to pull it up and continued to get nothing. We sped home to my house to drop off tacos for my husband and Thomas and I called into the house to have someone come out and pick up the tacos so I could then take my sister back to my parents along with their tacos.

We rolled down the window as my husband came out and the look on his face scared me to death. He leaned into the car and he said,

"The police were just here."

"What? Why?" I questioned starting to feel the escalating panic.

"Thomas threatened on Facebook to kill himself and somebody called the police," he said.

"Wait, what? Is he ok? What's going on? Where is he?" I yelled.

"He's in the house. The cops came in and talked to him and he told them that he's ok and they left."

"They LEFT???? They left a suicidal kid?" I cried.

"Yes, they said since Thomas promised he wasn't going to do anything that they would turn him over to us."

I wanted to vomit. My brain went into overdrive and all I could think was that I needed to get a hold of Thomas's therapist. So, since my husband was with Thomas and I had to get my sister home, I told him I'd be right back and I drove my sister back to my parents.

I barely had the car in park when I started calling Thomas's therapist. I finally got him on the phone and he was very calm and told me that if Thomas said he was fine then we didn't need to worry. He tried to calm me and all I could think was what a quack this guy was!!!



I basically read the guy the riot act and he agreed to call Thomas and talk to him. While I waited for the call back I had made up my mind that no matter what anybody said I was going to take Thomas to the hospital.

When he called back, he said that he now felt it was best for Thomas to go to the hospital and I screamed at him "Hell yes it's time!" and he tried to calm me but I didn't have any more time to discuss anything with anyone and I got in the car and went home.

When I got there I found Thomas sitting quietly in the living room, all signs of the earlier agitation gone, and I sat next to him and talked to him about why he was suicidal and I told him that I felt it was best that he go to the hospital and quietly and with tears welling in his eyes, he agreed.

We packed a few things and I hugged him over and over and told him how much I loved him and we got in the car and headed to the E.R.

(My Facebook Page About Schizophrenia)

History (Part II)

After that first psychotic break that day it took him about 3 days to recover enough to get back to functioning normally. While those days passed, there were nights where he wouldn't leave his room in the evening and he would put things (like his phone) that belonged out in the living room at night, just outside his bedroom in the hallway. He wanted no part of the world outside his bedroom door.

I went to his therapist a couple of times and told him about what happened and both times what I heard out of him was that what was happening was "prodromal bipolar illness." I got where he was coming from with that diagnosis because a large part of Thomas's family is diagnosed bipolar but I didn't see the swings in mood that accompany bipolar illness. What I did get hooked on was the word prodromal and every time I Googled it, the word prodromal usually came in conjunction with schizophrenia and both of those were now exactly fitting what I saw happening in my son. I couldn't get the therapist to confirm my worst fears and it was driving me crazy because I felt that if we would acknowledge the diagnosis we could get to work on helping Thomas.

Then one day I had a conversation with the therapist about the continuing psychotic behavior I was seeing and he started to agree that at some point Thomas would need help and then he said to me,

"If this happens again and you can't pull him out of it, then let me know."


What the heck does that mean? Does that mean that utterly terrifying thing my son experienced and that I worked to soothe him through may happen again and I won't be able to pull him out of it????

Then what???


 This sickened me and I felt like screaming constantly and I worried for Thomas and watched him every moment I could. I certainly didn't want to leave him alone to get lost in a place where he feels like he's going to be murdered and I won't be there to try to pull him back.

I wanted to die. Dead. I wanted this nightmare not to be happening and I didn't know how I was going to get him help or even how to get him help. Then within a month my father had a major stroke and my attention was shifted from Thomas to helping my dad back from everything he had lost. It was a horrible time with both my son and my dad disappearing inside themselves and I did what I could to manage the both of them but then on a pleasant October evening, after returning home from a vacation with my sister and my parents, I was greeted with yet another shock.

(My Facebook Page About Schizophrenia)

History (Part I)

I thought I would give you a little backstory. I realize I am coming into all of your lives in the middle of my struggles and it might seem like I've been at this a long time. In a way I have but in the biggest way, I haven't.

Thomas exhibited signs that something was wrong from a very early age. I worried for him, tried to fix what I could but was unsuccessful most times. I got him into therapy and was assured that what we were dealing with was garden variety anxiety and depression. Then I started noticing things that set off alarm bells about 2 years ago. Thomas was starting to accumulate and use things every now and then like a respirator mask (used in an effort to, in his opinion, protect himself from terrorism directed at him). These things were fleeting and easy to write off as quirks. At least that's what I did. Schizophrenia did cross my mind but I didn't see enough in him that would warrant such a diagnosis and I certainly didn't want that to be what was wrong.

Then last year is when it took a serious turn. In April his previously decent grades took a nosedive in about 2-3 weeks time from A's, B's, and a C to a couple D's and mostly F's. He was wrapped up in an online girlfriend at the time, who he broke up with, so I thought that might be a part of it. What I didn't know was that there was a storm brewing underneath.

Meanwhile every part of me was screaming that something was wrong with him but I couldn't put my finger on it. I became so stressed out because I couldn't shake this feeling that he was going to a bad place. All I can say, and this is going to sound crazy, is that I felt like some kind of force, perhaps malevolent, was ripping him from my grasp. I had no definition for what I felt so I put that sort of label on it but whatever was happening I was desperate to keep him healthy and safe.

Then one day, on beautiful perfect sunny day, I came home after having been grocery shopping and spending the afternoon with my mom, and found him in the house with all of the curtains closed and he was standing stock still in the center of the room and with a look of utter terror on his face that I will never in my whole life ever forget. He was shaking. When I went to him and hugged him he was vibrating...it was an odd feeling to hold him because his entire body was actually humming from the tip of his head to his toes. I asked him what had happened and he simply stated,

"He's out there, he's trying to kill me."

I was worried for my son but puzzled at who might be outside the house (because I had just come in from outside) and I looked out and no one was there. I told him no one was there, told him he was safe and then had him explain to me who was outside. I'm keeping the content of his fear off the blog out of respect to him but needless to say I had to explain to him that it wasn't happening and I got him seated on the couch and I sat there holding his hand and watched as he remained caught in some other world where he was about to be killed. I tried to soothe him but nothing worked so I left the curtains closed (because he begged me not to open them) and I slowly began to unload groceries while he became occupied with a TV show and began to settle a little.

What I didn't know at the time and was woefully unequipped for was that this was his first psychotic break and the beginning of his downward spiral into psychosis and subsequently full blown schizophrenia.

(My Facebook Page About Schizophrenia)

Monday, April 29, 2013

Did I just see that?

     Life kind of limped along and always there were the moments...little moments in time where I'd see something, as if from the corner of my eye, and then it would disappear as I turned my head. I could never shake the uneasiness I felt but figured it was my own anxiety in overdrive and I did my best to squash it down and shake it off.

     Then one day, one day it happened.

     A letter had arrived for my son. It was in a small envelope and had no return address on it. I was curious but left it on my son's table in the living room to open when he got a chance. Later that day, as my husband and I sat in our chairs, my son walked over to his table and looked down at the envelope and contemplated it for a moment. He then disappeared into his room and came out putting his respirator mask on as he approached the table and he stood over the letter once again. I was taken aback at what was transpiring before my eyes. The mask became no longer a fun item amongst all of his other things in his room. As I watched in horror as he put it on, the mask suddenly became a monster glaring at me saying:

     "So you're in denial, huh Melanie? Well, just try and deny me now."

     My son tentatively picked up his envelope and examined it carefully turning it over and over in his hands. My husband asked him what he was doing and my son tried to play it off as no big deal and then my husband asked the now glaringly obvious question:

     "Do you believe there is some sort of poison in that envelope?"

     My son smiled, embarrassed, and said that he did and the room grew silent.

     "Why would someone be trying to poison you?" I asked.
     "I don't know, it's just that there is no return address on the envelope and I don't know what's in it." he answered.

     It turned out that the letter was from the local National Guard recruiter (to this day I'll never understand why the guy hadn't put his return address on the envelope) and contained just an innocent, informational letter to my son. The letter though became a catalyst for me finally realizing that there was something far more wrong with my son than just garden variety anxiety and depression. For him to believe he was the subject of a genuine terrorist attack made it difficult for me to ignore any longer. All of everything I had witnessed over the years came flooding over me like a powerful tsunami and it was after that that I begun to be swept along by his burgeoning paranoid schizophrenia. I would now, forever be grasping at whatever I could, to try to make sense of the things that I witnessed thereafter.

     That ghoulish, mocking, gas mask on my son's face would be the first outright, direct indicator that my son was sick and needed more help than what he was getting.

     And so the march toward his first psychotic break began.

(My Facebook Page About Schizophrenia)

Sunday, April 28, 2013

Yet more unanswered questions...

I found him in bed many mornings of his young life soaked in urine. Countless times I questioned why he had just not gotten up to use the bathroom and one day I finally got my answer.
"Mom," he said, "I don't get up because the Grim Reaper is waiting in the hallway to kill me." This single statement from my terrified child knocked me back on my heels and left me reeling with yet another unanswered question. His little self couldn't explain the larger questions that I had: "When did this start?" "Why is 'he' there?". To him, the Grim Reaper really was outside his room waiting to kill him. I tried to chalk it up to childhood imagination but couldn't shake the serious and violent and deadly theme of what his "imagination" was dreaming up.
In his young life between the ages of 4 and 10 these themes had popped up time and again. When we lived in the condos in California there was a scary clown in his room making it so he couldn't leave his room. Everywhere we moved (because I was married to the military at the time) there would be something there waiting for him, trying to kill him, paralyzing him, terrifying him.
When I remarried and moved into our current house and after the Grim Reaper seemed to have disappeared, Thomas became silent about his fears. He was growing up after all and I think he felt he should act as such and not speak of what he saw or heard again. The minute he got quiet (just like the moment he was born) I was asking questions yet again. My intuition told me that something still wasn't right with my young son so where had the monsters gone? Had anything taken their place? Had it really just been a kid's imagination? Was he ok? Was he still afraid? How come he's not crying out?
Then it began again. It was subtle at first and I might have missed it and really in a way I did for a while because it was easy to do, easy to brush off.  I had changed the curtains in his room from drapes to the kind that roll down from the top and then retract when pulled from the bottom. I put these up in an effort to keep his room darker in the morning so that he would sleep longer. I began to notice though that he was pushing the edges of the curtains into the recessed window frame, I thought to keep more light out. When I asked him about it finally, he told me that he felt like people could see in and since the house next door is just 8 feet from his window, I thought that was a fair thing to feel and I left it alone. The problem was that this continued well into his teen years and there were more things indicating a deathly fear smoldering inside of him.
It soon became nearly impossible for him to come up from the basement at night without turning on a trail of lights from the room downstairs to his room upstairs. He still wasn't leaving his room at night, even at 14 or 15 years old, and those curtains stayed firmly tucked into the recessed window frame. His grades began to drop, his anxiety level in the daytime went up and one day I found, in a pile on his bedroom floor, a large chunk of his beautiful, soft brown hair just laying there in the middle of the room. I picked it up and started crying. It was as if someone had cut a lock of hair except that it was rooted in a tiny bit of flesh. It was the most beautiful hair I'd ever seen but it was so very very wrong to be found laying there on the floor like that.
I asked him if he had been pulling his hair out and he lowered his head looked up at me with embarrassed eyes and told me that yes, in fact he had done just that. I asked him why and he told me it was because he was frustrated and anxious. I tried to give him alternatives to doing that, I tried to help him cope with his anxieties, I did everything I could do but over the next couple weeks I would again find hair in his room or in the rec room downstairs. I didn't hesitate after that with questioning things and trying to come up with coping skills and I began my search for a therapist to help him deal with this.
We found a good one quickly and I was thankful in a way to be able to turn him over to the doctor for an hour once a week in the hope that this professional could find a solution for his anxieties and for what I learned was trichotillomania (his hair pulling).
What I thought was going to be something that could be fixed with some learned coping skills courtesy of the good doctor and my hugs and love and support, turned out to be just another chapter in the life of my terrified young man.

(My Facebook Page About Schizophrenia)

Saturday, April 27, 2013

His birth, my hope for him...

I guess I will just take a breath and begin to tell my story which is his story also.

When my boy was born he was the sweetest lil guy I'll ever see in my life.

I had chosen his first name long before he was a part of my soul and my blood. I named him Thomas J (yes, just a "J") after the boy played by Macaulay Culkin in the movie "My Girl" . The reason I chose that name was because that boy in the movie was a sweet, kind, compassionate, thoughtful child and my hope was that I would have a child with similar qualities. My son was also given a Thai middle name chosen by his Thai grandmother Somkid (Yi) and her extended Thai family members. The name they chose for him was Suntri (pronounced soon-tee) and it meant: "quiet well-behaved child".

On November 1, 1994 he came to me without a cry to announce his entry into my world. I questioned if he was ok as they lifted him from my body and being because his silence was worrisome. They assured me he was healthy and I watched as they cleaned him up and examined him in preparation to put him into my waiting arms. I didn't know then that the absence of his cry and my concern and question about his health and happiness would be a glaring indication of how I would live the rest of my life with him.

I will say right now that from that point forward my entire life became about attempting to ensure his happiness and health; it's all I ever wanted for him then and all I will ever want for him in the future. Being a lawyer or a doctor or a garbage man or whatever, was his dream to choose, but whatever it was he was to become, I wanted it born from a seed of happiness and health and whatever he chose to become I would support as long as he was happy.

As time passed, throughout his life there were often silent questions for me about his health and happiness. I could never quite put my finger on what I felt wasn't quite right and came away with infinite answers to my questions, and an ethereal not knowing that would plague me until recently. Throughout his young life he fought off great fear and anxiety and transient depressive episodes but his fight was valiant and I often found him in my arms needing me to dust him off, put his feet solidly back on the ground, and send him back out into his world.

This is not to say--not even a little bit--that he wasn't happy. Seeing him smile for the first time, hearing the first musical sounds of his laughter, finding him pushing his beloved Thomas the Tank Engine train around it's wooden tracks, seeing him from my front window perched in a tree laughing with the neighbor boys, seeing him on the ocean shore tossing popcorn into the wind for seagulls in flight and watching with wonderment as they swooped and dove for his offerings...

Cannon Beach, Oregon

...seeing him contemplative by the river throwing rocks in or drawing swirls on the surface of the water with a stick, seeing him hand in hand with his first girlfriend, seeing him run off to a carload of teenagers waiting excitedly out in front of our house, all showed me the seed of happiness and health sprouting and growing inside of him.

There was always the nagging questions though.

For every handful of healthy, happy seeds planted there was a sickly, sad weed that would inevitably crop up marring the beautiful landscape of his presence. I would be in the garden pulling and tugging at the weeds with all of my might but they would be firmly rooted amongst the healthy sprouts and I would shake my fist at them, mutter a muted obscenity and return to tending the sprouts and maturing plants of his health and happiness.

As he aged I marveled at the garden of his being, lamented and cursed at the weeds but not once did I give up on tending to the maturing tree saplings, mighty sunflowers and other signs of happy, healthy life. It was those regal signs of health and happiness that would provide shade and respite for the moments when we needed to escape the hot, sweltering, glaring heat of the illness that would begin to chip away at the promise I had held onto for his future.

Just as he was on the cusp of entering adulthood--the prime of his life, the dark tendrils, the creeping voices, the uncertainty and fear of paranoid schizophrenia began to take over the beautiful garden I had tended to for 18 years.

This is my story but more importantly this is his story too and it is my battle cry at an insidious illness that I will make it my life's purpose to conquer for him or at the very least lessen it's blow on his burgeoning future.

(My Facebook Page About Schizophrenia)

Friday, April 26, 2013

Welcome To My Blog

I began this blog here on Blogger but moved over to Facebook because I thought I would be posting little comments there about my life and that I'd keep up with bigger postings here. Since then, my Facebook blog has grown exponentially and has taken on a life of it's own. What I do now is cross post my daily blog to Facebook and to here. My goal is that my story here will come together in more of a journal format and my story on Facebook will become the place that I, not only share my life, but I also share information, links, inspiration and general short observations.

My blog (in both places) is now the daily story of my life with my son who has paranoid schizophrenia. I am very candid and often raw because I want to give you a better understanding of what it's really like for a family to live with a loved one with schizophrenia.

I am giving you a window on my world in the hopes that my story will touch you in some way whether you know someone with schizophrenia or you are just wanting to learn more about it from a different perspective.

There's a lot to read but this is mine and my son's story. I hope that you'll find it touching and informative and that along the way you'll share your story with me by way of the comments section or email.

I'm glad you're here reading now. I hope to see you again.


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