Saturday, November 30, 2013

Russian Roulette.

I have watched in the last week and a half as Thomas' work has increased his working hours from 6-10 to 6-10:30 and they have called him in one time and he has worked an extra shift. All of this added up to 6 days of work in a row with late hours and the end result being Thomas beginning to hallucinate again, ramp up his delusional thinking, and his sleep has suffered. He got his hours yesterday and now they have him working Sunday, Monday, Tuesday, Thursday and Saturday from 6pm to now, yet again increased hours where he will be working till 11pm. The agreement between his job rehab specialist and the company Thomas works for was that he would work till 10 at the latest and the company is not holding up their end of the bargain. That is retail for you though and I'm not the least bit surprised that they are doing that.

What concerns me though is the toll that the hours are taking on Thomas. That and the increased customer activity because of the holidays which will put Thomas smack in the middle of crowds of people. He went in yesterday to pick up his check and came out lightening quick because he was afraid of the crowds. I didn't know that was the case until he got in the car and told me that he didn't want to work when there are so many people. He's always been a solitary soul, preferring to be alone or with just a couple people around. The fear of crowds goes back a long ways and rooted in it is one of his biggest delusions where ultimately he feels his life and the life of people in the crowd are in danger and he feels a great responsibility for their safety. That is a lot to put on a young, stressed out, tired kid. Imagine feeling responsible for the very LIVES of the people around you and feeling your presence around them is the cause of their life being in danger.

Admittedly I am getting worried for him as the days pass by and the hours increase and subsequently his illness starts to ramp up. I don't want him to quit work altogether because I want him to see that he can hold a job and be successful but to what end? None of the "professionals" in his life felt working was a good idea for him but Thomas wanted it so badly for himself that I overrode the professionals and agreed to let Thomas go ahead and work. I am seeing now why they weren't crazy about him working.

Now, as his mom, I am wondering what to do about the situation. How far do I go to protect his sanity and how much do I let him figure it out for himself? There is the part of me that I term the "typical" mom of a teenager who thinks her kid is an adult now and needs to take care of himself and learn his limits even though he may pay a price but honestly that way of thinking has backfired time and again in the past. Left to his own devices, he ends up quite sick. Then there is the other part of me. The mom of a son with schizophrenia that thinks that he's pushing himself too far right now and I want to rush in and help him protect himself. I think there is a place for me somewhere in the middle of all of that but figuring out what that is, is what is tripping me up a little right now.

What I have opted to do is let it go another week and see what happens. I can't help but feel like I am playing Russian Roulette with Thomas' sanity but waiting a little and seeing if it sorts itself out seems like a relatively fair option. I will watch him though and I can guarantee you that if he gets worse over the next week that I will be calling his job rehab specialist to see what she can do about working with the company that Thomas works for and getting his hours cut back.

I am tired. My dad is getting worse and worse VERY quickly and that is taking a huge toll on me and I just can't pile on a psychotic son and a hospitalization with accompanying meds changes on top of that right now. I am Thomas' mom and it is my job to protect him and I won't hesitate to do so if the need arises. It just seems to me that that need is approaching quickly.

Friday, November 29, 2013

Medical Alert

I have talked about this before but today I followed through with it. I purchased Thomas a medical alert dog tag necklace engraved with all of the pertinent information to help first responders deal with him. I realize I am taking a risk that he won't wear it because his paranoia might not allow it but he has assured me he will and that he thought it was kind of cool.

It's scary what you have to do prepare for the worst case scenario. Just THINKING about the worst case scenario is scary. I ask myself so many questions about what I should and shouldn't be doing to prepare and admittedly I have dropped the ball on so many things. I think my doing that is a function of still being in denial about this diagnosis. I have never been this strong in my belief that he does, in fact, have schizophrenia though and the more things I do to prepare to care for him, the more I am faced by the realities of this illness for him.

I have been lucky so far with what I have had to face. In his worst moments he has come to me for help and in his best moments I get a window on his world by way of some well-timed, well-orchestrated conversations. I'm fairly certain there is a great deal I don't know but I do consider myself fortunate to have the information that I do. If he were to go missing today or have a run-in with law enforcement, I feel like I would be able to provide everyone with current, detailed information about what he's dealing with.

The thing is, I can't ignore what I have been told by doctors in the past. I have heard a few times that with the fixed nature and type of delusions that he has that he will have a run-in with law enforcement by the time he is 23.

23.

I don't think I'll ever get that number out of my head and in my most worried moments I measure the time between now and that day. I realize that is not a fixed date and that if we pass it by, we're not in the clear but it is definitely a marker in my mind for what to plan for in the future.

As I designed and worded his dog tags this morning I have, more than once, held my head in my hands and asked myself,

"What the hell happened here?"

"What is going to happen to Thomas now and in the future?"

It's so easy to be lulled into complacency as the weeks and months pass between the now and the last hospitalization or the last round of medication roulette. I'll admit it, I can't put enough distance between those two points in time. But then what sneaks up into my consciousness is that there is also the point in time between the now and what the future holds. I know that NOTHING in life is guaranteed but the diagnosis of schizophrenia has a way of casting a pall over the future because of its track record in the average person. The truth of the matter is, while Thomas is pretty closed-mouthed about his beliefs, I know for a hard, heart-breaking fact that he is just biding his time until he sets into motion what he wants to happen. He tells me often that he is just waiting until a certain age when he feels people will listen to him and take him seriously and then he will do what he needs to do to accomplish what he wants. Rest assured as it stands right now, he has no violent intentions but he definitely has a goal in mind for his future. Knowing all of that, I would be crazy not to pay attention to everything, plan for the worst, and pray like crazy that what he wants for his future never comes to fruition.

So, getting the medical alert necklace today has been a sobering project for me. Seeing it all engraved into a dog tag passes me, not so gently, into reality and as I read it over and click the purchase button I think about who will see it and under what circumstances it will be needed. I will have to wait and see if he will wear it consistently and more than that, I will pray that he'll never take it off when he's out.

Just FYI, here is what the tag stamped with the medical alert emblem reads:

Thomas _____ / birth year/ NKA
Home address
Melanie (Phone number) Mom
Paranoid schizophrenia
Antipsychotics/Cogentin
Buproprion/Lorazepam
Govt delusions-fixed

I'm taking a huge risk by putting in the part about the delusions but my thinking behind that is that if law enforcement gets a hold of that they will know what they are dealing with and how to respond. I know that it can backfire and cause prejudice but I am praying that it will have the opposite effect and will help them better understand what they are dealing with and maybe step back a little and be as thoughtful as they can in their response.

I know, who am I kidding, right? All I can do, though, is the best I can do to prepare for the worst and all I can do is pray that in the moment that it all goes awry that the very best in the human nature of the responders is present and they will treat Thomas with the best that they will have to offer in the circumstances under which they will find themselves.

Wednesday, November 27, 2013

Snowflakes

OK. I want to write this but I am dead tired and just not waking up this morning. My coffee is not doing its job at all. The reason is because I didn't sleep last night and the reason for that is this:

I went and picked up Thomas from work last night at 10:30. He got in the car and he was acting strangely. I asked how his night was and got an underwhelming response and I looked over at him and he looked tired so I thought I would leave him be. I might have asked a couple other questions but I don't remember because all I can think of is what happened about halfway home.

It's cold out here. We have been in a cold snap for a few days now and Thomas, who loves the cold even when he's wearing just a t-shirt and shivering, has wanted snow. We haven't really had any sort of conversation about it so I have thought little of it but then in the car on the way home out of the silence between us came his voice,

"It's snowing! I can see the little crystals coming down."

That is fine except that

It wasn't snowing.

I looked and looked at the windshield looking for snowflakes hitting it, I looked up ahead to see if I could see anything in the headlights.

Nothing.

I asked him again if he could still see it snowing and he confirmed that he did. So I said,

"I don't see it snowing. There should be something hitting the windshield and it's completely clean. Are you sure you're seeing the snow?"

"Yes, I do."

"Well, I don't see it Thomas. I think you are hallucinating."

Dead silence.

In an attempt to lighten the mood and because we've joked before about these sorts of things I said to him,

"Well, I suppose if you're going to see something that isn't there then at least it's something like snow. I am thankful that when you do hallucinate that they are ordinary things like this and what you've seen in the past."

He smiled a half smile and I turned back to watch the road and we rode along in silence for a bit. Then I asked him,

"Does it bother you when I don't see what you see?"

He said it didn't and I asked him one more time if he saw the snow and he again confirmed it.

When we got home he seemed depressed. He went to his room and came out and stood in the middle of the living room as I turned the lights and TV off. He looked so tired and depressed and I was getting worried about him. First the hallucinated snow and then his figure standing in the darkened room.

"Mom, can I have a hug?" he asked.

I grabbed him and held him as tightly as I could and asked him if he was ok. He said he was but I just couldn't get myself to agree with his answer. He turned and went to his room. He has a dimmer light in his room and when I passed by his room on the way to bed he was just standing in the middle of his half-darkened room looking lost. He came to his doorway and I asked him if he was going to brush his teeth and he said he had to do something first and then he said goodnight and closed his door to his half-darkened room. He was alone in there with whatever was haunting him and I went to bed wide-awake and unable to think about anything but the snowflakes that hadn't been there.

I know snowflakes are no big deal. I know he wasn't seeing some monster or bloodied corpse or snarling animal. It was a few innocent snowflakes but it scares me to death. He had been reality checking with me a lot in the last few days but this was the first time that I really couldn't see what he saw.

So what does this mean?

Don't tell me because I already know. I already know and I feel sick and now my mind is swirling wondering what else he sees that he doesn't tell me about. Here we are again.

Here we are again. The positive symptoms are back. I thought he was fine.

I. Thought. He. Was. Fine.

Tuesday, November 26, 2013

Taking Stock.

It's really been a trip down memory lane converting just my blog postings from this page over to my regular blog. I have gotten through reposting the first month of our life when I began here at Facebook and I have forgotten how sick Thomas was back then. Even more sobering to me has been the fact that it's only been 7 months since things began to get really bad. Well, who am I kidding? They've been bad for much longer than that.

I remember why I started the blog. After Thomas' diagnosis it took me a few months to let it really sink in that he has schizophrenia. I remember months of collecting information and books to read and just setting them in a pile, promising myself that I would read them but finding it hard to face what was happening to Thomas. I was in true denial and in a deep grief that took me, really until recently, to rid myself of. It's interesting to me the things I will tell myself to stave off emotional pain.

Then I sprang into action. Very first on my mind when I started this blog was my plan to not hide in the long, dark shadows of schizophrenia and the stigma that surrounds it. I was ANGRY and I wasn't going to doom myself or Thomas to a life hiding from the truth and so I started writing.

Today here I am having written what now amounts to my journal and I took so many of you with me and more joined along the way. I am content in the fact that I have shared our story with all of you and I am happy that I was honest the whole way. I deserve to have my story told, Thomas deserves to have his story told and all of you deserve to have your story told. That is why I am here and why I will continue to stay here writing and being a voice for all of us.

I hope sometime you all will go and read my blog in it's entirety and then be able to come back here having shared, again, in the painful but interesting and heartfelt journey that Thomas and I have taken. Some of you have said I should write a book and I am coming to realize as I continue to convert the postings here to over there that I have done just that. I have written a book. The truth of the matter is, our story has only just begun and maybe somewhere, far down the road, I will do just that, write a book. That would be my dream as it always has been my dream and I would love to be able to see that dream come true.

As for Thomas in the last couple of days, he has taken on more hours and work. We talk practically every car ride to work about the big paycheck he will get and he is very excited. I see the wheels turning as he plans what to do with the money. Also, he is building a computer from the ground up using those paychecks and he's slowly but surely piecing and parting it together. As each part has come to our door and he has opened it, he has been so excited and there is a pile in his room of various parts. He's been so confident about putting it together until the other day.

I came in from outside and found him in the living room with the tower opened up and all of the blank spaces for parts screaming to be filled and he was just standing there looking at it. I was brought back to when he was attempting to put together the things it would take to enroll in college and like then, he was frozen now. The project is exciting or rather what he'll have when the project is done is exciting but now, as he stood there over all of those complicated pieces of technology, he was frozen again, faced with the daunting task of putting his dream together.

He asked for my help but having no clue myself, I told him he was on his own. Sadly within minutes he was moving everything back to his room and he sunk into the couch to watch TV, his excitement gone. That is the thing about this illness and it's been around for him for a long long time. There is so much he wants to do but accomplishing them alone is nearly impossible. His brain does not fire enough or in the correct way to enable him to be able to do things that take a lot of planning or thought. Even a few sentences of instruction from me get lost in the air between us because after 2 sentences, he has checked out, his brain on overload.

So, the more things change, the more they stay the same. I look back at my months of my writing and I see my boy struggling then just as he does now. He's not on a train hurdling towards a broken bridge but he is still schizophrenic and the essence of the illness is still there. It amazes me how this illness hangs on and how others (like his therapist) see a remission of sorts but I, for one, see him still struggling to survive.

Monday, November 25, 2013

Yin And Yang (Part II)

After being in the car for a little bit and riding along in silence I began talking to Thomas about feelings. I told him how sorry I was about the turn that the session had taken and I asked him how he was feeling now. He was struggling and launched into a calm but delusion-based conversation with me. We talked about how a certain type of creature feels and while I gently argued what I felt to be true about them, he held tightly to his line of thinking. I let it go because I felt that at the very least he was talking about feelings even though he had to remove himself from the equation and attach himself to these creatures.

Delusions are still a troubling aspect of this illness to me. While he seems better in some ways, those delusions hang on tightly and still, even with my best attempts at dispelling them, they hold tight.

The beauty in that session came as the night wore on. We got home and talked about things. It was like someone had unlocked the floodgates, lowered the protective fortress around his thinking, and he was painfully (to me) candid about things that had been bothering him outside of therapy.

I had tried for weeks to understand his lackluster attitude about work and I discovered in that conversation that his (online) girlfriend had been giving him grief every time he had to go to work. Every night before work she had been texting him begging him not to go to work and leave her and every night it had been so hard on him to cut her off and leave for work. I told him that he needed to take care of himself and his happiness in a relationship because trying to keep her happy at his own expense made for two unhappy people and subsequently an unhappy relationship. To him, getting to admit this to me, helped him begin to like his job. In the days since, when he's worked, he's been excited to go to work, has talked with me afterwards about what happened during his evening at work and when he had gotten called into work last minute a day later, I asked him how he felt about it and for the first time I got out of him what I have waited to hear since the beginning,

"More hours, more money." He said.

That's what I had been waiting for him to attach to all this time and since he's been working more hours in the last few days he has been very excited about his paycheck on Friday.

One of the last things that we talked about that day after therapy was about how his best friend Patrick wanted to move out on his own. We talked a lot about what that meant as far as affording it financially and the more we talked the cold, heartbreaking truth came to light. I asked him if he wanted to move out and his response was something like,

"I do want to move out because Patrick needs a roommate but I am worried that if I have an episode in the middle of the night that there would be no one there to take me to the hospital."

That, for me, is one thing that I just can't guarantee won't happen. I can do things to ease him into independence as far as financially and moral support goes but what I cannot do is take away the nighttime episodes that leave him terrified and alone, locked in his bedroom. I hate this about this illness. All of the normal things that are easy to control are just that. Easy. But anything related to this illness is completely beyond my power and worse, beyond his. We came to the conclusion that it was best for him not to move out right now until he felt more stable and I watched as he slipped into a disappointment that I couldn't ease for him.

Virtually the entire evening, off and on, we talked about all sorts of things. His openness was such a gift to me because there were things that I was able to help him with that had he not talked to me, he would have had to deal with them alone. We talked about hallucinations and he asked me if I could help him sort out his environment as long as he felt they were around and I was happy to be able to do that.

All in all, the evening for he and I was a time to decompress from that horrible session and because his walls came down, we were able to sort out many things that had been bothering him. I hated sitting through that session, hated the way it left me feeling scorched and blackened emotionally and I hated that he had come away from it holding onto memories he had long since filed away to protect himself. From it, though, came a better mom and son relationship.

So as you can see, just like yin and yang, there was a light that came from the darkness. He lives to fight another day and I can finally breathe again knowing that, as his mom, I have much to offer him as far as comfort goes and where I can't comfort him, I will be his "reality checker", his driver to work, his emotion labeler and most importantly his mom who will love him with all of her heart until her dying day.

Saturday, November 23, 2013

From Thomas' Heart

Page member Debbie asked me after my earlier post what Thomas thought of my blog. It made me think a second because when I started the blog I told Thomas about it and he was ok with it but since then it has evolved and grown and I thought I would take Debbie's advice and check in with Thomas again about it.

I just sat down with him, just the two of us, and I asked
him what he knew about my blog. He said he really didn't know. I asked him if he wanted me to tell him about it and he agreed to listen.

I told him that I write this blog to help people better understand schizophrenia. I told him that I post relevant information about schizophrenia that I find around the internet but that I also tell his story and mine as his mom.

He smiled.

I told him that oftentimes I write about his struggles but that I don't give too many details because I want to protect his privacy and I gave him some examples of what I write about him.

He smiled.

I told him that I posted his "revolution" picture last night and told him what I said about it. I also told him what people had said about it.

He smiled.

I told him that this was a public forum and that a lot of people read this but that everyone is supportive of him and me. I gave the example that I had posted his graduation picture on the page and had told everyone about how he had been hospitalized just before that and that I had been scared that he might not make it to graduation. I told him about how support for him and excitement for his accomplishment exploded on the page.

He smiled.

I told him that because this is a public forum that there is a chance that someday someone might want to interview the two of us for a story and I explained to him what that would entail. My friend Naomi and her son Spencer had told their story to a national newspaper and that it had spread like wildfire and I explained to him what that meant for them as far as how there were critics but most often there was an outpouring of support. I told him that because I write what I write that if we were to sit down with somebody that they would already know a lot about our lives and that they would have questions. I asked him if he would be ok with that and he said yes and

He smiled.

I asked him if he had gotten any friend requests from strangers on Facebook and he said that he had but that he had rejected all of them. This is where his paranoia had kicked in. He doesn't want to be found on Facebook by strangers and is smart enough to know not to trust anybody he doesn't already know. I told him that I might send people I meet his direction but that I would always warn him ahead of time and it would be his choice to become their friends and he liked that and

He smiled.

So, there it is. From Thomas' heart to all of you. He is now very aware of what I am doing, he is healthy enough and clear-headed enough to comprehend the gravity of what I am doing with this blog and I gave him every chance to decide for me what I should or shouldn't do. He's very excited and very supportive.

As of right now, I am making the decision to move forward with who I've been and what I've said up to this point on this blog. Thomas and I's story is making a difference to so many people and I think I have handled the telling of our story with respect for Thomas and myself. I will check in with Thomas again in the future but I think he and I are now definitely on the same page and we are both excited about what is being done here to educate the public about what it's REALLY like to have schizophrenia and love someone with schizophrenia.

I love that boy with all of my heart. He is an amazing young man with a big heart and I couldn't be more proud of his bravery, not just about allowing me to blog about our lives but also to be facing this illness head on and continuing to move forward even when the worst that schizophrenia has to challenge him with is thrown at him.

Friday, November 22, 2013

Yin And Yang (Part 1)

Well? Leave it to me to make things hard for Thomas. I am feeling a lot of heartbreak and guilt today because I feel responsible for Thomas having had a rough day in therapy yesterday. Here's why.

Thomas has been having a lot of ups and downs lately and I thought it might be a good idea to fill his therapist in on the things that I had seen. On top of that, j
ust before therapy, Thomas had been at a friend's house and found out that another friend of his had gotten fired from a job and Thomas felt that he shouldn't have been. He was angry. Really angry. Not only was he vibrating with anger, wide-eyed, squirming in his chair, couldn't find words to complete sentences to describe what had happened but he looked to me like he was going to explode. I wanted to go into therapy with him to help him find his words and to let his therapist also know just how angry Thomas was. I felt he needed my help with a lot of things and it was my intention to get him some.

Everything started off innocently enough. There I was a concerned mom talking about Thomas' depression and
anhedonia. I brought up the anger too. Then somehow...somehow the session took a dark turn, veering off of my original reason to be there and suddenly Thomas was being drug through his past and not the good stuff either.

I learned so much about him yesterday, mostly about how he FELT about events that had taken place in his childhood. I found out that he had been bullied as early as 5th grade (it was 8th before) and I found out the answers to a lot of things he had kept hidden from me for all of these years but that I suspected were going on. I learned more about the source of his delusions, learned that he had, a few times in groups of friends when he was in junior high and high school, openly talked about those things and people had walked by and called him cruel names and labeled him anti-American. Effectively he had been taught by all of that cruelty to shut down, keep his mouth shut, stuff his feelings and NEVER talk about what went on inside of him. There it was, the answer to why sometimes it's like pulling teeth to get him to talk to me.

I also learned (but I kind of already knew this) that he is virtually unable to label his emotions and he agreed with his therapist that I am the one who understands and labels them long before he can. In that session though, his feelings came flooding out and every last one of them he could label and all of the feelings of hurt and anger and sadness put him on the 1-10 scale as a 6. He's rarely a 6 in anything. Even when he was his most paranoid he labeled the paranoia between a 2 and a 4 so I knew that labeling how he was feeling in that moment a 6 showed me just how much pain he was in.

I will say this. The session was very productive. We learned a lot and were able to put pieces of the puzzle together. We got the beginnings of his schizophrenia traced back to 5th grade and probably even earlier. What I got in return for all of that was a hurting young man sitting in the car beside me afterwards, stunned into virtual silence and desperate for human contact. I felt horrible for him. I felt horrible for myself because my original intent was just to report in about the depression, not to help provide answers to a lot of painful events in Thomas' past. All of it had started innocently enough and ended in terrible wreckage with Thomas' heart and my heart tangled in the proverbial mangled metal of a past that had been pushed deep inside where no one was supposed to find it and bring it to light.

-----------------------------------
(I titled this post yin and yang because out of the day yesterday came some kind of, sort of positives too but in the interest of keeping my postings shorter I will write about the other half of the day soon.)

Thursday, November 21, 2013

The Magician

I was watching a special on TV last night about David Blaine. For those of you who don't know who he is, he is a magician and endurance artist (to name a couple things) and he does the most amazing (and kind of freaky) tricks. This post is going to take you into a different area of thought because as I sat there and watched him it made me think about how what he does could somehow relate to schizophrenia. He is very good with working with mind over matter and teaching people about connections to each other that are invisible but that he can "manipulate". He totally freaks me out but at the same time, especially last night, he made me think.

What he did that piqued my interest was an "experiment" in connections. He had the actor Will Smith and his wife Jada Pinket-Smith each close their eyes one at a time. First Jada closed her eyes and David pushed Will's shoulder. The room was silent and Jada had no way of knowing that David had just pushed her husband. When she opened her eyes David asked her if she had felt anything. She said she had felt someone touch her shoulder. David asked her to expand on that and she admitted that it was her right shoulder. She was spot on and it seems that through Will she had felt the touch even though she, herself, had not been touched at all. David went on to do this to a couple other people and all had the same experience. What the experiment showed was the amazing connection that we have to each other, something outside of the physical that exists somewhere in the ether.

That experiment made me think of two things. First about tactile hallucinations. Let me first say this is all just my mind pondering something that seems completely impossible in theory but having witnessed what happened it seemed to me to gain some validity. My question is this, is it possible that for some people with certain kinds of tactile hallucinations (probably not the bugs crawling on the skin one) that they are born of a human connection being made somewhere? I know this is pretty far out there but it does make you wonder a little bit.

Even closer to my heart is what Thomas experiences. He often tells me that he hears me calling his name or talking to him. As you well know by now, he and I are extremely close and often when we are in different rooms or different places I think about him, often talk to him, or about him with God. Is it possible, even a little bit, that he's "hearing" me talk to him because I'm actually, in my mind, talking to him? I have never delved deeper into the content of what he hears because he, most times, doesn't want to talk about his hallucinations but gosh, after watching David Blaine's show, I really have to wonder.

I know that the hallucinations in schizophrenia are multifaceted and often don't fall on the side of a positive experience but I really can't help but wonder about the source of those hallucinations. Forgive me for possibly sounding like an idiot here but that show really got me thinking. On the "saner" side of things, often my mother and I experience pain and emotion at the exact same time but blocks apart. It is only later when we talk about how we felt that we discover that each other were feeling those same things. Oftentimes we will call each other at the exact same time or text similar comments out of the blue.

So I guess I just wonder about hallucinations a little bit. Could SOME of them be born of something like I'm talking about here? Could some of them be coming from somewhere else that we are connected to but don't know that we are? I tend to fall on the side that some of them possibly do but for all of your grounded people, I probably sound crazy myself right now but one thing's for sure. I've seen it in action in my life, I saw it in action on that TV special last night and I'm open enough to think that it's possible that connection to something or someone out there might be a source of hallucinatory experience.

Wednesday, November 20, 2013

That Annoying Spotlight

The other day when I spoke with Thomas' therapist about Thomas' grandpa's condition something came up that seems to plague me every now and then. As his therapist told me that Thomas was doing well my head began to swirl and the questions about the validity of Thomas' diagnosis bubbled up. He spoke so assuredly about Thomas' great health that I started to think that maybe we had it all wrong. There is always a tiny part of me that doesn't want any of this to be so. I want to believe that Thomas isn't schizophrenic and when that happens I begin to look for clues to reinforce that he is just fine and I really start to dismiss the signs that still remain.

As his therapist went on about how good he's doing, I finally interrupted him and asked him,

"So, are we still looking at schizophrenia here?"

I asked this with all of the different emotions that you can imagine you feel when you start to doubt everything about how sick your loved one is or even IF they are sick. There's nothing like that whirlpool of emotions swirling around dragging you down to parts unknown. You search your mind as you feel excitement, fear, foolishness, uncertainty, and most importantly HOPE. It's amazing how fast I grabbed onto hope and in the space of a few seconds began planning a life for Thomas free of schizophrenia. Had the last year just been a fluke? Would the next year mean success in his job and maybe he'll go to college after all?

I wanted so desperately for Thomas not to be sick anymore. I wanted the meds to go away, the need to keep a constant eagle eye on him to go away, the questions about what I do witness to go away. I wanted it all gone and I said a silent prayer that we had it wrong all along.

Obviously rationality is not in action at points like this. It's so easy to forget the late nights in the E.R. talking with psychiatrists and listening as Thomas spoke with confidence about being tracked by the government. It's so easy to dismiss those things as a very smart kid with a vivid imagination but inevitably it's always some professional that pulls you out of that whirlpool and starts to break apart your own delusions that have taken root in just a moment's time.

Thomas' therapist went on to tell me that Thomas is well medicated and compliant and that that is why he is doing so well. He told me that there are things that the medication won't help though and those will be the things that stick around that very much signify that Thomas is, in fact, schizophrenic. It was those nasty negative symptoms that brought me back to reality. The social awkwardness, the shaving without shaving cream right before he's supposed to go to work, the anhedonia, the not showering for days at a time, the inability to carry on a conversation without stumbling over words and thoughts. All of those negative symptoms that are the other side of schizophrenia are going to be a constant fixture even without all of the hallucinations. Let's not forget those delusions too. When I came back down to earth those damn delusions of his came crashing back into my consciousness also.

Just like that, all of my hopes and dreams that manifested out of the swirling mist above me disappeared as the therapist shined the light on what still exists in Thomas that signal that he still warrants the label of paranoid schizophrenia. In the moments before that annoying spotlight cast brightly on my hope that we could walk out of that office schizophrenia-free, I had a life planned, a different life, a happier life, a more productive life.

Alas, I am forced to face reality myself. Thomas has schizophrenia and as hard as I hope for something to be different, the hope is not as strong as this illness that has its nails dug into the brain of my boy.

Tuesday, November 19, 2013

Family Of Choice

It's interesting over the last year how my support system has changed. I went from having my family of origin as my sole support to having people who have children with schizophrenia become my family. You see, generally I'm not someone who reaches out to people. Not even a little bit. In school, as a youngster, I had a very hard time socially so I walked into adulthood with little trust for others and their intentions. Here and there throughout my 20's I had a couple of friends but they put in the work on the friendship while I prayed that we would make it. They were truly gifts in my life because while I felt they had every reason to leave, they found every reason to stay.

Then last year I met Naomi Haskell. She and her son Spencer had been featured in an article in a large national newspaper telling their story of what it was like to live with schizophrenia and love someone with schizophrenia. As I read, I realized, they were telling my story. My heart instantly went out to Naomi and I began to try to find her. I wrote the author of the article via email and within less than a day I was in touch with Naomi. It happened so fast, like a bolt of lightening out of the blue and I finally felt like I had someone I knew who truly understood me and Thomas.

It wasn't long before she and I exchanged phone numbers and she called me. We talked forever about our lives and I grew to love her strong, open nature. She pulled no punches when it came to the truth about her life with Spencer and then also her own feelings about being a mom raising her son with schizophrenia. Through her strong, candid conversation with me she taught me that I wasn't alone, taught me that it was ok to be scared, to be angry and most importantly TO LAUGH. And laugh we did. With so much in common we became fast friends and I don't know what I would do without her now.

Then there was Stephannie. We found each other and became friends as her daughter and Thomas struggled side by side, but states apart with schizophrenia. Her daughter had been diagnosed just a month before Thomas and that tied us in a way that I had shared with no other. It seemed our journey as friends was meant to happen because our children simultaneously battled through the nasty first-year symptoms of schizophrenia. She and I don't talk much but when we do get in contact, we are instantly two parents who are one in a lot of ways. Her daughter is struggling so hard right now as Thomas seems to be leveling off and I feel like I am a mom, at her side, feeling what she must be feeling watching her daughter disappear. I do my best to help but I know, because the same goes for me, that there is little I can offer to help other than to offer up a chance to vent about the frustration and pain and even victories that her daughter fights through and she, as her mom, fights through herself. She and her daughter are Thomas and I's family and I'd do whatever I could to help her get through what she is going through now.

Then there is Lisa, Jennifer, Jannelle, Sam, and Debbie to name a few. All mothers with children with schizophrenia. We don't talk too much but they are family nonetheless. There is an unspoken connection there because we know that each of us alone, but often painfully together, fight the same demons that each other fights.

My point is this. These women have changed my life in ways I do not have words for. Each of them have been amazing support for me and it is my hope that I have had something to offer them in return. I have been unafraid to enter these friendships, unafraid to trust and in return have found something amazing. They say you are born into your family but that you get to CHOOSE your friends and that makes those people you choose so much better because it was an active decision born of shared lives (in our case that we have children with schizophrenia), shared pain, and most importantly shared happiness when there is a good day in our lives. These women, and so many more of you that I didn't mention but that are amazing support to me on this page, are my friends. We chose each other. In the end though, I consider them family and I see a beautiful future together as a family of choice, one that took each one of us to choose the other and discover what family really means.

I love you guys.

Monday, November 18, 2013

The Disparity Between The Therapist and I

After Thomas' session the other day I went in to talk to his therapist alone about the fact that my dad is dying and I was concerned how Thomas would take that when he was finally told. I told him that, as his therapist, he needed to keep an eye out for depression and any other thing that might manifest once Thomas knows. He became concerned and asked a few questions but then seemed to jump to another topic without fully giving thought to what I had just said and the toll it might take on Thomas.

There he stood, telling me how terrific Thomas is doing and that he felt that this had been the best Thomas has been since this time last year. While I do agree with him to some degree, I couldn't help but think back to my earlier conversation with Thomas about his delusions. All I could see was that Thomas is still locked in tightly with his beliefs and those seemed unchanged.

This has happened a thousand times before. His therapist isn't privy to the information that I am so he sees a much brighter picture than I do. Sometimes I feel like he gets some kind of commission based on how well HE thinks Thomas is doing and that frustrates me. I told him a little about what Thomas had told me and he all but waved me off and said.

"Well, if he starts not showering or something then we need to be concerned."

There it was. The measuring stick, according to the therapist, that Thomas isn't in a good place. It's funny because there is so much that I just live with now that I don't think to bring these things up. Thomas hadn't been showering and he and I have had our typical struggles over that but I hadn't thought to bring that up to his therapist because that's just how it is. That is what Thomas does sometimes. When I told him that Thomas was showering maybe twice a week, if that, he stopped in his tracks. Finally he was going to listen. He didn't like that at all and wrote that down in Thomas' chart. So much for his commission.

I went on to tell him that Thomas seems disconnected from the rules of being social because he had shaved the other night without shaving cream 20 minutes before work and was bleeding horribly and I had offered him a styptic pencil to stop the bleeding. The thing is, the styptic pencil leaves behind a white film that is very noticeable and he looked like he had grown a snow white mustache. I told him to dab at the remains and try to get it off and he came out of the bathroom a little cleaner but still with a white upper lip. He was ready to go to work.

I kind of let it go to see what he was going to do and he seemed unmoved by the fact that he was about to enter the work place looking like he did. All of the anxieties he has about working are there but this, this showing up with a white upper lip, didn't seem to phase him in the least. I told him as he got out of the car to go straight to the bathroom to finish cleaning up. When he got in the car that night he was clean but I was left wondering about the bigger picture. Why does he not care about showing up with a white upper lip? Why did he shave 20 minutes before work with a dull razor and no shaving cream and why had he not showered in a few days?

This is not the picture of a healthy kid and I let his therapist know all of that. Strangely I left out the whole mess about Thomas thinking that the government is coming into his room and all of the other stuff because the glow emanating from his therapist about his GREAT SUCCESS with Thomas was fading after telling him about the showering and the shaving incident and somehow I didn't have the heart to take away his pride.

So, why is there this disparity between what the therapist sees and what I see? I think it's because for time eternal he thought Thomas had "just depression" or "just prodromal bipolar illness" all while everything about Thomas, all of the psychotic breaks, all of the delusions lay locked up inside of him and after all of the years that Thomas spent with this man he hadn't known these things about Thomas. It was me that told him then and it's me now that reminds that bright shiny therapist that things just aren't always as they seem. The picture painted by Thomas in therapy is far from the true work of art stored inside his mind and what manifests at home.

Friday, November 15, 2013

Who Am I To Judge?

I had one of those moments with Thomas yesterday that are few and far between. He opened up and talked to me about his delusions. You'll have to forgive me as I try to write this but also protect Thomas. It won't be easy but I'm going to try. The content of his delusions are integral to the story but I feel a certain need to protect him when I write.

To start, Th
omas believes that he is destined to become someone great in our future. He believes that he is the chosen leader of a movement towards change in our country's history and he believes this with all of is heart and soul. He told me, at length, yesterday all about it. I asked him questions about it and he was very forthright with his answers. Why shouldn't he be, I suppose? He believes this to be his destiny and figuring out how to get there is what he dedicates his time to and if he holds this belief then I can see why he wouldn't hesitate both in his work towards this destiny and in his telling of his story.

As I drove along and listened to him tell me how he is a peaceful person and wants to do these things without violence he also stated that he fears that others with him might take over the control and cause violence. Even in his grand plan he sees it as a peaceful undertaking because that is his spirit. I love this about him. I've always maintained that he is a sweet young man with the best of intentions however he does have this illness that drives him towards a destiny, either that first, he will follow the course of most people with schizophrenia and end up medicated and hospitalized or second, that he might actually follow through with his plans and succeed. I have to say, in this world where anything's possible, who am I to judge and say he won't be able to do this thing successfully?

I know I sound like I've tipped over into his world but in a strange way, I can't help it. To listen to him talk, to better understand his plans, I can see with the right education and preparation, that he could be successful. I'm not terribly excited about what he's doing but I also feel, in a strange way, who am I to say that that won't happen? I've struggled with this before, caught in a battle between his sanity and mine. I know that I want to have things stay just as they are but in a world of people who rise up out of nowhere and make changes in this world, why can't my son be one of those people?

I know, I'm hearing myself right now. I'm re-reading what I'm writing, I know what you are all thinking. I guess this is where the mom in me kicks in. He told me that his therapist is working like crazy to convince him that he is not destined for greatness and that his life will look more like working a nine to five job and having a family. Thomas on the other hand feels his destiny is what it is and he is hurting and depressed and a little bit angry that someone is trying to rip his dream away from him. I feel bad for him. Think of all of the people who wanted to be NBA basketball stars and worked hard and became them. Think about the people who started businesses when they were 12 and are now billionaires. There was no therapist once a week telling them they were crazy and who were telling them to think of their lives as settling for a nine to five job. No one told them they couldn't do the thing they loved and because of that they got to become who they really wanted to be.

Then, my support and enthusiasm for Thomas' destiny is tempered with the one reminder that he is sick. He believes that because of his future plans that right now, in this very moment, he is being followed, he is being tracked by electronics and he believes that the government comes into his room every now and then and goes through his things looking for clues to his plan. It is always when I hear that that I am pulled back to my reality and reminded of his unreality. And so, I struggle.

I want him to have dreams, I want him to believe in himself and his power to make change in the world, I don't want to take his dreams from him and stomp on them and tell him that the job that he hates right now is what he'll be doing whether it's at the place he's at now or even somewhere else. I don't want for him to sit at work, facing shelves, hating every second of it and have him think THAT is his destiny.

So, I listen to him talk and a part of me thinks,

"Who am I to judge what his destiny will be? Who am I to stand in his way?"

Rest assured, during the conversation I, in no way, told him that he could do what he plans to do someday. I, in no way, said I support him or like what he's thinking. I listened intently, I asked questions, and I reminded myself of the parts of his plan (like that he's being watched) that indicate that he is, in fact, schizophrenic. A little part of me, however, stopped for just a moment and asked myself,

"Who am I to say that what he wants for his future is wrong?"

Wednesday, November 13, 2013

The Silent Schizophrenic

Something was off in Thomas yesterday. I couldn't put my finger on it but I felt it. My sister and nephew are in town and up until about 2 days ago Thomas had been very social, spending lots of time with family and being so patient and kind with his brother. I saw the storm brewing in him over the last few days and I thought to myself that I had better keep an eye on him once my sister left because I felt like he might start isolating and maybe even sink a little.

Then yesterday, when I was out and about, I called Thomas to invite him to lunch with the rest of the family. He waffled about whether or not to go and I told him that we would love to have him but that if he didn't want to go, he didn't have to. He chose not to go which was a surprise since where we were going was one of his favorite places. Again, his mood was concerning me and as the day wore on I got more and more stressed and concerned for him.

I called him again later and he admitted to being depressed and bored. He had lost all interest in the things that have kept him busy and happy over the last few days and then I knew for sure that something was off. He also told me that there had been no anti-depressant pill in his pill case that morning so I rushed home to dig the pills out of hiding and get him one. I understand that missing a dose of anti-depressant for a few hours doesn't then induce depression but he thought that might be the cause.

When I got home I found him slouched in a chair and all of the curtains in the house were closed. This was a huge warning sign to me that something wasn't right. He wasn't talking though so I don't know why he did that but in the past it's been because he felt someone outside was watching him. I didn't like that they were closed solely for the reason that I knew that meant that something was awry but since he wasn't talking, I had no idea about what might be going on in his head.

Earlier I had promised him a new cell phone and when I brought it to him he was completely uninterested in it. I felt like a cell phone sales woman trying to convince him to take it. He had been asking for a new one for days and his refusing it was another red flag to me. I put it away and made him dinner and sat down with him. I didn't want to leave him alone inside himself anymore. We sat in relative silence until it was time for him to go to work.

After work I asked him how work went. His response?

"It was work."

I tried to get a little more information out of him to keep him talking but again he wasn't talking so we rode home in silence listening to classic Christmas music on the radio. When we got home I put some things away and did other busy work and when I went by his room I found him on his bed slouched against the wall staring at the ceiling. He looked so depressed. I asked him how he was feeling and he said he was tired so I asked him for a hug and he slowly got up for one. I held him so tightly, again trying to hug away his pain and I told him to just get some rest. I went to bed and lay there awake praying that he would be ok.

The thing about Thomas is that he is what I consider a "silent schizophrenic." With a couple exceptions, he has mostly kept his pathology to himself unless I have prodded him for information. He quietly writes his now 2 huge notebooks full of schizophrenic musings but he never speaks of them. He has always silently suffered inside of himself fighting a valiant fight against the delusions and hallucinations. I know so many of you with "louder" loved ones feel helpless to fix your loved one when they are out of control but I, too, feel so helpless because I know the storm that rages inside of him and I know he goes it alone. He is silent but the lack of words and actions speak very loudly to me and like all of you, I pray for calmer, happier days when the symptoms subside and there is peace for a little while.

Thursday, November 07, 2013

Should He Disclose His Illness?

I read a blog the other day that talked about whether or not someone should disclose the fact that they have schizophrenia to their place of employment. The thought has been running around in the back of my head because I've been thinking about Thomas and that same issue.

While I can't say whether or not he has said anything, I imagine that it's just a
matter of time before he says something to someone. He's very open about having schizophrenia and rolls with the punches if the reaction is negative. Well, he seems to. I know that he's run up against friends when he was in high school that bullied him because he had disclosed that fact but he's also gained amazing support from other friends who do everything from, at the very least, remaining his friend in spite of his diagnosis or like his very best friend Patrick he has someone who will reality check for him helping him to discern between what is real and what is not. I know that a couple of his friends have taken his delusional rants in stride and do tell him he's wrong about those things but they remain his friends and accept him for who he is. I couldn't be happier, especially for Patrick because this kid is nothing short of amazing to me in the day and age of stigma and bullying, because he has stood solidly by Thomas' side.

I have to wonder about work though. I have watched Thomas from outside the store as I have waited for him to get off work and the telltale signs that he's "not like everyone else" are there. You see, for one thing, Thomas stands and walks without moving his upper body at all, not even an inch. It's a very odd looking posture and indicates to me that he's struggling. It is a rare moment when I catch him fully animated like everyone else which makes the difference between "normal" movement and his way of being. I can't help but think that others notice this too.

Also, based on what he's told me about work so far, he is not making friends and is having a hard time relating to people. Luckily he's not in customer service so the public doesn't interact with him much which is the way he wants it. I know when he's hidden inside himself he is stone-faced and speaks very little and I know that in turn that is off-putting to the people around him that don't know him.

I also know that if he does get to know someone that his delusional thinking and lack of ability to tell the difference between what is real and what isn't will become glaringly apparent and since it scares me a little bit, even now to hear, I can't imagine how it might make a co-worker who doesn't know him feel. Which brings me to "the question". Should he disclose that he has schizophrenia?

I worry a lot about this for so many reasons. One is obviously that an employer is in all likelihood going to have a knee jerk reaction like I have seen in the past and that is one of fear. God forbid they have a mentally ill person around let alone one with (the dreaded) schizophrenia. No doubt they will have heard the news stories that we all have and it's not to big of a leap for them to then begin questioning their safety, the safety of the store and of their customers. If he discloses could he find himself without a job?

I get so angry at this thought and often promise myself that this is one issue I won't stay out of. If he loses his job and I can be certain it's because they have discovered that he has schizophrenia I can just about to guarantee that I am hiring a lawyer. You see, I live in a small town and business people across town know each other. My husband works in sales and HE knows most of his customers personal business along with knowing about other business owners drama. It's a bit like a soap opera in this 50,000 people-sized town and word travels fast. With everything in the news, I'm fairly certain that if Thomas tries to find another job and uses previous jobs as references that ex employers will find a way to let it be known that there is something gravely wrong with Thomas. I don't think they can give details about that sort of thing but I know from my own experience in the working world that there are ways to get across to prospective employers that this kid just isn't the right fit. Once this word is out, in a small town this can be a vicious cycle of mouths running off when they shouldn't be.

So, I don't know. There are two things that could come out of this. Inevitably Thomas is either going to tell someone he trusts that he has schizophrenia or he's going to talk too much about his delusions and concerns about things happening that aren't. Either way, people are going to find out and it's that moment that will make all of the difference. We live in a conservative, "good ol' boy" town where differences are not celebrated. Instead people are forced to live quiet, private lives where isolation is the norm for them.

Thomas goes back to work on Friday. Each day that passes feels like a countdown to the end of that job for me. I will tell you, he doesn't like his job very much and while he's flourishing outside of it because he's got his little brother and favorite aunt here visiting, I know once they leave he'll fall back into his usual patterns.

All of what I write are my thoughts and my observations from the outside but I know him pretty well and unfortunately in the past he definitely has a "shelf life" with people who don't understand him or who are afraid of him. So, I have to wonder, is disclosing his illness to his employer a good idea or should he keep his mouth shut and hope they see past his behaviors and words?

Wednesday, November 06, 2013

In Today's News

A young man who suffers from paranoid schizophrenia woke up this morning tired from a rough night's sleep and feeling the after affects of his medication, a sedation he can never seem to shake.

He brushed his teeth, cleaned his retainer that has been chewed through from nights of grinding his teeth because of stress. Then he used the bathroom and went back to his r
oom and got dressed in his Carhart work pants and an old t-shirt, laced up his work boots and then lumbered into the kitchen for a hug from his mom. She gave him the hugs all while asking questions about his night, like whether or not he slept well, how he felt and others, all asked with a tiny bit of worry leaking into her voice that she tried to keep steady so as not to make him feel like he has to take care of her emotions too.

He took his medications and carried a tray containing his breakfast into the living room to watch TV and eat. For breakfast he had a yogurt, some fresh strawberries, a glass of Carnation Instant Breakfast milk made in an attempt to get enough nutrition into him and a glass of juice used to take his meds with.

He sat down and tuned into the Today Show and while he sat there he sometimes piped up to talk about some fun story they were showcasing. When he got up to clean up his breakfast dishes he--without being asked--took out all of the recycling.

He sat the rest of the morning before work his head resting on his hand drifting in and out of sleep all while watching TV.

His weekend was relatively uneventful except for a very scary moment for him when a major fight broke out between his friend and his friend's step-dad and this young man with schizophrenia was witness to it all. As the anxiety built at warp speed and as he fought off encroaching anxiety related hallucinations he texted his mom and asked her if he and his friend could come home to get away from his friend's dad.

When he got home he was wide-eyed, shaking and directionless as he tried to calm himself enough to help his friend sort through the boxes of stuff they had brought from his friend's house to protect it from his friend's father's violent tendencies towards his son.

They went downstairs and played video games and things calmed down. By night's end the young man came to his mom and told her how scared he had been and told her that he wished he had been able to take an anti-anxiety pill but he ended up being able to calm himself after a long time.

That night, and last night, he went to bed after spending a good part of his time isolated in his room. He came to his mom last night very early in the evening, eyes drooping and saying to her that he was going to bed early. She hugged him, told him to sleep well and have good dreams and he disappeared into his room for the night.

----------------------------

This is the face of paranoid schizophrenia. It's an average every day person just trying to get through their day fighting off symptoms. While in a threatening situation he did not lash out, no guns were drawn, no blood was shed, there was just a scared kid looking for a way to safety, which meant getting home to his mom.

------------------------------

This is Thomas and this is our every day life. Nothing exciting. Even in it's worst moments my son looks for safety, not to harm others. There are people with schizophrenia living quiet lives of fear, anxiety, isolation, self-harm, and just general desperation but they are living their lives just like the rest of us. There are many with schizophrenia who wake up, are medicated, are in therapy and are highly functioning holding jobs and maintaining marriages and raising kids.

My point is this. The newspapers don't report on them. They're just boring average everyday people. They're not sensationalistic subject matter, they would hold few people's interest, and so they are forgotten. They don't get their quiet voice heard saying, "Hey! Look at us! We have schizophrenia and we're just like you!"

---------------------------

I just wanted to attempt, today, to give them a voice.


 

Tuesday, November 05, 2013

Mental Illness In The News

A certain kind of uneasiness washes over me when I watch the news after some violent event has occurred driven by a young man who everyone said was fine then shows up, in LAX for example, and shoots and kills people. It seems like lately there are so many of these stories or perhaps the media is just picking up on them more. I don't know. What I do know is that it's taking a toll on my heart because when I hear,

"Coming up next, LAX shooter is under heavy sedation and heavy guard while people scramble to figure out just what went wrong to cause him to do this."

I feel sick and I want to cry. There's a certain kind of pain that comes to someone like me when these news stories break. I am the mother of a son with schizophrenia and I am painfully aware of the stereotypes attached to that diagnosis and I would be lying if I said I didn't think to myself,

"That could happen to Thomas, to me, to my family and worst of all to innocent people."

Let me say a couple of things first. One, Thomas has never been violent. Not once in his entire life. He has been angry (but haven't we all?) but he has never lashed out at anyone. Based on the study I read yesterday, violence causes violence, meaning that people who are violent schizophrenics were violent long before they had their first psychotic break. To clarify, it means that they had a propensity within them to lash out violently BEFORE they ever had signs of schizophrenia. In turn what that means for me and for Thomas is that the likelihood of him buying a gun and shooting up some public place are pretty slim but these news stories still make me think about him. How can they not?

I suppose, like the vast majority of the public, I have fallen, in my mind, into believing those very same stereotypes when it comes to my own son. I am not proud of that fact since I am out here on the front lines trying to dispel that belief but the feeling is there nonetheless. When I see those news stories I am transported back to that late night meeting with Thomas' doctors during his second hospitalization when they sat and somberly told me that because of the current (at the time) trajectory that Thomas was on, left untreated or undertreated, because of the types of delusions that he has, that he would end up in jail by 23. They left me alone to imagine for myself what might bring Thomas to that point and my brain went all sorts of terrible places.

What is a mother to do with that sort of information? Of course I went to the bad place with that and ever since, it has stuck with me. On top of that, now hearing news stories like this most recent one, I think about the far reaching effects of an event like that. Not only are there the innocent victims, but there is a very sick young man, usually not adequately treated beforehand and selfishly I think about the mother of that man and the hell she must be going through. What questions did she have about his sanity beforehand? Had she tried to get him help and failed? Then, I think about what she has to live with knowing the child she raised and loved has become a sort of monster that took lives away from people who didn't deserve to die. I think about what she will have to live with the rest of her life.

News stories about rogue shooters are no longer "just another story on the news" for me and I'm certain for many mothers like me with children suffering from schizophrenia or some other mental illness. I know that they hear these sorts of stories and, like me, they pause for a second as a wave of nausea washes over them and a sharp transient pain hits their heart and they wonder,

"What if that were my child?"

Life, for me, changed that night in the hospital when I heard Thomas' final diagnosis of acute paranoid schizophrenia and they ominously told me that he would end up in jail someday if he weren't properly treated. Life, for me, became a maze of doctor visits, meds changes, middle of the night rushes to the E.R. for psychotic breaks and a palpable uncertainty about what might happen for Thomas in the future. For me, I feel I am a part of some sort of macabre club of parents trying to love and protect their sick child so that something like what's in the news now won't happen to them. For me, especially lately, the nausea and pain are an almost constant fixture in my being as I pray that I am doing right by Thomas and getting him the help he needs, the love that sustains him and the protection against the outside world that threatens his sanity around every bend.

Monday, November 04, 2013

Questioning My Faith

I don't often say much about my belief system because I know that it can be a touchy subject. What I want to say right up front today is that while my belief is in God, I want this post to apply to all faiths and belief systems. We are all one in my opinion, if only in that we have loved ones with schizophrenia and we are all filled with doubt and wondering more often than we care to talk about.

Last year at this time, Thomas was fresh out of the hospital on a very low and very useless dose of Risperdal. He was quite sick and completely in denial about his illness. I had talked to him on the way home from his second hospitalization and I told him that the doctors said he had schizophrenia and he stared straight ahead saying nothing. I asked him if he knew what that meant and he said that he didn't. I then asked him if he wanted me to tell him a little about it and he agreed to listen.

Then, there it was, the moment in which I had to start explaining to him the realities of his shiny new diagnosis. He listened intently as I told him that it was a serious lifelong illness and that what that meant for him is that he would have times where he would be quite sick but that there would also be times where he would be functioning quite well. It was one of THE HARDEST talks I have ever had to have with him. We talked a lot about the symptoms that make up schizophrenia and what symptoms he was showing and I looked over at him as I drove and he seemed to be taking it in ok. As the conversation died down, as it inevitably always does, I looked to the sky in front of my car and I silently asked God why this was happening to my sweet boy who has such a good heart and didn't deserve this.

So many things had been happening in my life at that point. My dad had had a serious stroke just a couple months before and my mom followed that with a serious mental breakdown not to mention prior to all of that my beautiful niece who has serious Bipolar disorder had attempted suicide and darn near succeeded. Now, my only child had one of (and I would argue, THE WORST) diagnosis that could be given to a young man in his prime. I had every reason to look to the heavens and question, "why me, why my family?"

What I came away with was not an anger at God but more a wonderment about what He had in store for the future. Deep down inside I knew He wasn't done with my family yet and I had every reason in the world to turn away from my faith and place blame on His plan for me but instead I made a different choice.

One thing I knew for sure was that life now was completely out of my control. I couldn't take away Thomas' schizophrenia, I couldn't restore my dad's brain to it's former beautiful glory, I couldn't bring peace to my mom and I certainly couldn't save my niece's life. The one thing I could turn to was trying to understand God's plan in my life.

My response to all of that was that certainly, in amongst all of the heartbreaking things that were happening, there must be something good happening. So, I began my daily hunt for the light in the darkness. I was surprised as I practiced this how many truly wonderful things were happening all around me. Sometimes in the darkest hours all I could see was the bird in my backyard singing it's song or that the stars above were amazing dots of light shining for millions of years. They were small things and yet so very big. They were reminders that, yes, there are good things all around us even in our darkest hour.

While outwardly to my sister and my close friends I would say things like: "SERIOUSLY God? You're going to throw that at me NOW?" it was more a cry out in despair, not in a loss of faith in what was meant for me and my life. So, did I question my faith? Did I collapse in defeat because of the onslaught of injustices that were being thrown my way? No, instead I chose, yes, it had to be a choice, to find the blessings in each day, the light in the darkest hours. To me, there was no other choice. With all that was happening, and it's true for all things in life, I had a CHOICE to make and I chose my faith and kept walking into my future.

Saturday, November 02, 2013

Oh! So That's Why!

Someone mentioned to me in the comments section that I should give Thomas some space after work to let him find his way to me to talk to me. She was right about that to some degree because I had questioned Thomas after work every night and when I couldn't get down to the bottom of his obvious struggling, I left him alone to come to me if he needed to. What I discovered yesterday was just exactly what's been going on.

We went and picked up his check and when he got it opened I noticed that it was only $75. I was surprised to see it so low since he had worked quite a bit. I expressed that I thought that and he said to me,

"They took money from my check because I had damaged some product."

I took his paycheck stub and examined it for any deductions that looked like they had done that and couldn't find any. Thank God.

What happened was that Thomas had been helping to unload a truck and he went to catch a box and he dropped it and it broke open and stuff spilled out and broke. He had made a mistake, had an accident. I explained to him that they weren't going to charge him for that because he had made a mistake. I went on to tell him that he is new to the job and those kinds of things are to be expected. I said that the store has insurance for those kinds of things or that they eat the costs of things like that because accidents will happen. He was so grateful.

So, that was the source of the rough night at work that he wouldn't talk about, of course he was upset if he had dropped and broken some product. Then it was also the source of his disinterest in his paycheck when I tried to elicit some excitement out of him about it.

True to form, it is always something that we don't think about that happens. Here I was worried that it had something to do with his illness and instead he had just had a bad day at work. I asked him why he didn't tell me that it had happened and I got my usual "I don't know" and I asked him if he thought I might be mad at him about it and he said no. I asked him a couple other questions about it trying to hopefully get him to understand that he can talk to me about stuff like that and it was met with more "I don't know's" and some silence. So, I left him alone.

I guess a couple things come out of this experience. One, instead of assuming it's illness-related, I need to realize that now that he's working he's going to have rough days, just like the rest of us. Second, I need to practice not assuming the worst in all things Thomas. I'm just so used to doing both of those things because he's been actively psychotic in the last few months and so many things that have happened have pointed to that.

Apart from the dropping product incident, he has been doing well and says he likes his job. He got his hours for next week and he only works two days. He's excited about that fact. It's funny, he's been wanting a job for so long so he could earn money to build a gaming computer but now he's excited he doesn't have to work that much. I think the transition from home to work has been a test for him so I think he just wants a break from the day to day grind even if it means he doesn't get that computer built soon.

So, he's good. He's learning and he's working through what it means to hold a job. Personally I'm just happy that he has a job so that he can gain experience in "the real world."

Friday, November 01, 2013

Happy Birthday Thomas!!!



Today is Thomas' birthday! It was exactly one year ago today that I was driving home from the hospital with Thomas and he had been released A.M.A. He was 18 and had signed himself out of the hospital and was on a very light dose of anti-psychotic, hardly enough to make a difference. Here he is today a happy young man, with a new Nintendo 3DS (from mom and dad) and a pocket full of birthday cash in hand ready to face the day and hang out with friends.

I love this young man with every ounce of my being and my birthday wish for him is that he stays healthy this year.


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