Thursday, September 26, 2013

"There But For The Grace Of God Go I"

I speak on no authority here other than that I am the mother of a son with schizophrenia. I think that only gives me the knowledge of experience and of imagining the future in a unique way because of his illness which obviously is wide open but is fodder for the imagination.

I sat yesterday in the dining room of my dad's care facility and watched the evening news. The story was about Aaron Alexis and the reason it was being talked about was because they were airing video of the shooting for the first time. I turned to watch the story and came face to face with the newscaster and he began talking about Alexis' state of mind leading up to the shooting. Let me tell you, they were ice cold words to have to listen to. My blood froze in my body and I shivered and finally turned away from the T.V. and rested my head in my hands. The more he spoke, the more I silently said to myself two things,

"no, no, no, no, no, no, no........"

and

"There but for the grace of God go I"

What the newscaster spoke about was the driving delusions behind what caused Alexis' to go to the Washington D.C. Naval Yard and start shooting that day. The story is that Alexis believed that he was being controlled by E.L.F. waves (extremely low frequency). The newscaster talked at length about Alexis' mental health and about what was carved on his gun and how he told no one that what he was planning to do. To be honest, I tuned out the story after the E.L.F. waves controlling Alexis because that hit too close to home for me.

Let me first say that Thomas doesn't feel he is being controlled by E.L.F. waves but his delusions have themes that I have been told by more than one expert that he would be involved with the police at some point in his life. For JUST A MOMENT I was in the shoes of the loved ones of Alexis and I was in my own shoes in the moments that story aired and I prayed that I would never find myself and Thomas facing a situation like Alexis did.

You see, to be a mother of a son with schizophrenia or a loved one of someone with schizophrenia in this day and age, I think that every last one of us has a moment where we think to ourselves "but for the grace of God go I." For any one of us the Alexis story hits way too close to home and causes our hearts to drop from our chest to our feet. Our loved ones don't talk about everything that goes on inside of them. I know for a fact there is an entire world in Thomas' mind that I know nothing about and even closer to home with this Alexis story, last night I asked Thomas what he was watching on YouTube and he turned his screen away from me and said,

"I don't know."

And even when I asked him how he couldn't know what he was just staring at on the screen he repeated to me that he didn't know. I'm not going to lie, in light of the newscaster's comments that no one knew of Alexis' plan to do what he did, a little tiny part of me, for just a moment, questioned how much Thomas really didn't know about what he was watching and how much was he hiding.

Now, for those of you thinking I'm blowing this out of proportion, let me repeat this. When you have a loved one with schizophrenia, when you have been told by more than one person that your son may end up with run-ins with the police, you cannot help but go "there" and think how your story isn't far from that of many others in terrible situations where their loved ones acted on their delusions in some way (not always violent, mind you, but acted nonetheless) and left everyone asking why.

I have to tune out the news and I imagine many of you do or if you are strong enough to watch it, I know what you go through in your minds. The randomness, the scariness, the mystery of this illness leaves us all holding our breath much of the time wondering what's around the corner.

When will the next psychotic break be?
When will a new delusion be generated?
What is he/she keeping from me?
What do I do?
Where do I go?
Who do I talk to?

SOMEONE PLEASE JUST HELP MY LOVED ONE GET BETTER!!!!!!

So, when the news story ended and I was comfortably in my dream-world state of mind where nothing feels real, when I looked around the room at all the people and thought to myself how they JUST DON'T KNOW, all I could think about was getting home to Thomas and hugging him and saying a silent prayer that the worst won't happen to him. There is no way of knowing what lies ahead for Thomas. My hope is that it's nothing but the very best but my absolute worst fear is that it may not be the best after all.

Wednesday, September 25, 2013

The Sunlight After The Darkest Midnight

I was thinking today of all that we have lost to schizophrenia. This isn't about being sad necessarily just more an observation of what we once had and what is now.

I was changing the shower curtain in our bathroom and was wanting to change it to something I really liked but was reminded yet again why that ugly striped, not-matching, curtain was hanging t
here in the first place. As a result of months of fighting to get Thomas to take showers, anxiety while he was in the shower, and finally him quitting them altogether for a short time, we had changed what was once part of the d├ęcor of our bathroom to something that would enable him to be able to shower again unafraid.

I am not the least bit upset that a blue horizontal striped shower curtain hangs in my newly remodeled bathroom. Not in the least. No one ever goes in there but the family and we are all aware of why it hangs there. What does upset me is why it's there and every time I take a shower, or like yesterday, wanting to change the shower curtain, I am reminded of what schizophrenia has taken from us.

What gets me about this is that this illness has the nerve to take from my young man something that is rightfully his. It fills him with fear about unnecessary thing and rips from his grasp, plain old ordinary things and turns them into monsters and leaves us all hoping he can regain those things but disappointed when we end up saying good bye to them forever.

This is the nature of the beast that's for sure but one I am not yet willing to bow down to on behalf of my son. We had a run-around, Thomas and I, in a restaurant yesterday about where our table was located, it's size, etc. and instead of letting the beast take our nice table with a view from us, I worked patiently with Thomas to get down to the bottom of his anxiety and help him work through it. He ended up enjoying his lunch overlooking our beautiful valley and we were all able to claim a victory against schizophrenia's grasp on our throats.

I write this to offer some hope to all of you. The fact of the matter is, you will lose pieces of your life to this (like my shower curtain) but there will also be touching victories to silently celebrate every time you have a memory of that day that schizophrenia tried to take a piece of your loved one away for good. There is always a sun that follows the blackness of midnight. You just have to hold onto that in the hard times.

Monday, September 23, 2013

Untangling Thomas' Thoughts

One of my page members asked this weekend about delusions and their evolution and I wanted to share one experience I had with Thomas that will show how a particular delusion was formed and ultimately resolved (amazingly).

As usual I am always surprised by the delusions' existence and this time wasn't any different. We were driving along (this is usually how I learn about delusions) and we got to talking and Thomas said something about when he graduated from college that he wanted to move to a foreign country, I think it was Germany. I asked him why and he said it was because he felt that his money was safer there. We had a long discussion about this and he even named a couple other random countries that he would move to to protect his money. None of any of it made any sense. He talked at length about the governments of these countries and their economies and because I wasn't educated enough on their economies etc. I pretty much just listened. The really great thing about Thomas is that he speaks with such confidence and conviction. I think this is a fantastic quality to have if he had accurate information on which to speak about. In this case though, he spoke with that authority but nothing seemed to make sense when I really thought about it.

While he was talking I thought about why he might feel that his money wasn't safe here in the U.S.. Bear in mind I'm never as lucky as I was then to discover the origins of the fear. Here's the story.

When he turned 18 his bank account went from being sheltered under my account and turned into an adult account. As a result they put an automatic savings account transfer on his new checking account. The premise was that they would transfer $20 on the 15th of each month from his checking to his savings. It's a really great program in theory and the absolute worst one for a schizophrenic young man. For a couple of months whenever the 15th of the month would roll around Thomas would get increasingly agitated and would constantly check his bank account. He would beg me for money to cover that soon to "disappear" $20 and things got so bad that I started giving him the $20 just to help calm him down. Well, I thought it had but finally he went "underground". By that I mean that he begun to generate a serious delusion around his bank transfer and that was what brought us to that day in the car talking about him moving to Germany to protect his money.

You see, it all started because he had become a legal adult, his bank account terms changed, I had made him do the changeover on his own in an effort to give him some independence (that experience scared him to death--having to work with the banker to get that transition made), and then an almost constant anxiety about when the bank was going to move $20 from his checking to his savings. Then in keeping with other delusions of his, he made elaborate plans to move to another country in order to protect his money.

Well, that day in the car I figured it all out. I'm not sure how I managed to do that but he and I talked about it and I explained to him exactly what was going on with his account. I told him his money wouldn't be stolen from him by the bank ever and ultimately I asked him to trust my years of experience on this one. He visibly calmed down and agreed to stay living here in the U.S.

One thing I didn't waste time going and doing was that I took him to the bank a couple days later and fought to get that $20 transfer stopped. Since then, Thomas has been fine with his money, he's relaxed and enjoyed it and gotten quite adept at using his debit card and checking receipts against his online account to make sure everything matches.

So you see? In this case, this elaborate delusion about moving to another country in order to protect his money was planted as a small seed because of an average everyday bank account transfer program that was soaked in heavy anxiety and over time became an elaborate delusion. It's really very fascinating to have witnessed and I learned a lot from that experience in how to help Thomas but sadly, some of his worst delusions are nestled in years and years of methodical work to cover whatever anxious seed was planted originally. So many things are so far buried and make little to no sense and I have no hope of ever untangling them. Luckily in this case with the bank thing I caught it in time and annihilated it.

I really hate that his mind works like this. I hate this illness. I hate that he can't just feel some anxiety and find a real world way to work through it and feel safe again. Most of all, as his mom, his protector, I hate that I can't be there for every delusion inception and help him find a safe way to cope.

Saturday, September 21, 2013

The Light At The Core Of Our Being

Yesterday was an amazing day with Thomas. It still surprises me a little bit when he agrees to spend the day with me, just him and I, no video games or TV.

It started because I asked him to go for a walk with me and he agreed. The weather was beautiful and the chestnuts and acorns are falling from the trees so we talked about that and so much more. I first have to tell you guys that he's doing really good. The Wellbutrin is working its magic and that awful "trapped" feeling has pretty much disappeared. I am so thankful for this because he really seems to be suffering a great deal when he feels that way. So all of my fears about the medication seem to be unfounded. He's still only about a week and a half into it and I think they'll increase it another 150mgs so we'll see what that brings.

Anyway, we had a very nice walk and talk and then I took him to a meeting at the place helping him find a job. Afterwards I thought I'd see if he wanted to go somewhere with me and he said that he did feel like going somewhere but he didn't know where. I suggested a store that opened here in town a year ago that he hadn't been in. He loved that idea. It really amazes me that my 18-year-old wants to spend time with me wandering a store looking at random stuff. He did though and it turned out to be fun. There were Halloween decorations and I can't believe I'm going to say this but they had Christmas decorations too that I was surprisingly excited about. He looked through everything and told me about what he wanted and we talked about Christmas' past. I was a happy, content mom and he was a happy, content young man.

We went a few other places and it was on our way down to get him a vanilla milkshake that it hit me. For just a moment, time slowed down and I stepped outside my body. I told myself that this was an amazing day and that I really needed to treasure it. Here he is with me, happy, reasonably healthy, and enjoying life. Here we are together as mom and son and the sun is shining and everything is good. I stopped myself and I reached over and I squeezed his leg. THIS WAS A MOMENT TO HOLD ONTO AND NEVER FORGET. This was one of those times that I am going to need to remember when things get rough and he disappears from me into delusions and anxiety and depression and whatever else schizophrenia will throw at us down the road.

I can't tell you what it was like to be in that moment. There is some sci-fi movie, and maybe more than one, where there is a light at the center of a person's being and it begins to glow and spread throughout the person and suddenly that glow is radiating from the person and everyone can see it. That's what it was like with Thomas and I in that moment. We both had that little glowing ball of light in the center of our beings.

I reached over again and held his hand and said,

"I love you kiddo."

And he said to me,

"I love you too mom."

It was a beautiful moment after a beautiful day together. I wish that there was some way to lock these moments inside a box that I can come back to when times get rough. I imagine a place like one of those miniature Christmas towns where the lights glow in the windows and people walk their dogs on the street while a couple skates on a tiny frozen pond. I want something tangible like that that I can open the lid, turn on the lights and watch the skaters dance on the ice to beautiful music.

One thing's for sure, I will never forget those hours with Thomas. I love that boy so much!!

Friday, September 20, 2013

Roaring To Life

Yesterday was a pretty tough time in Thomas' therapy. Strangely it affected Thomas' therapist and myself more than it seemed to Thomas. We are now entering an era of family therapy where we are going to work to track down when Thomas' delusions started. I personally thought this was going to be an ambitious project but it turned out to be very enlightening.

Remember how I wrote that Thomas had taken a test to measure his delusions? Well I think I mentioned to you guys that some of them had been resolved but had been rampant in another, younger time in his life. It was those delusions that we worked on pinning down their causes and it was those delusions that held a very painful event for Thomas that he had kept from everyone until now.

I had originally brought Thomas in for therapy for depression and anxiety. The catastrophic event that got me to rush to find him a therapist was that I found out that he had trichotillomania. For those of you who don't know what it is,

"Trichotillomania is repeated urges to pull or twist the hair until it breaks off. Patients are unable to stop this behavior, even as their hair becomes thinner and bald spots appear."

It was a heartbreaking thing to find out that he was doing that and how I first discovered it was by finding a large clump of his hair with a piece of his scalp attached on the floor of his bedroom after a traumatic event. I remember picking it up and being carried back to the time when he had his first haircut and I held a lock of my baby boy's hair in my hands and I remembered how I had thought how he was growing up and would never be my baby again. Then, there I was in that moment in his bedroom, holding that chunk of hair and there was the same sadness, made deeper with the knowledge that the reason I held that hair was because my boy was in such excruciating emotional pain that he felt the need to pull chunks of his hair out to relieve the pain he felt. I was forever changed as a mother in that moment.

Consequently because he did that he had a bald spot. This bald spot led to a cruel bullying event at school and as a result he began to form opinions about the world and the people in it. This time in his life was the era of the beginnings of the formation of his schizophrenia.

Don't get me wrong, it wasn't that one event that determined his schizophrenia but it was certainly an event that caused him to start forming the tell tale false beliefs (delusions) that are a hallmark of schizophrenia. I remember so many other things that happened at that time that also screamed "schizophrenia" and somehow it was all overlooked. After all, when you're not looking for schizophrenia and instead trying to pin down depression and anxiety then that is exactly what you see, depression and anxiety.

What was most striking about the session yesterday was the dawning realization that we were hearing the engines of schizophrenia roar to life. I believe that prior to that time, Thomas struggled with symptoms that now looking back, were very much indicative of schizophrenia but the delusion formation that ran unabated for years after that terrible bullying incident and the subsequent coping from this event, were a very key point in time.

It is a very odd place to be. To be able to sit there and listen to this horrible story about his being teased for his trichotillomania and to hear about the subsequent coping strategies. To be able to hear him say things like he saw for certain that every time he walked the halls of school everyone was pointing and laughing and saying terrible things to him--which to hear him describe that it makes me wonder if he hallucinated that happening since what he describes is an incessant onslaught of abuse that I just can't imagine was possible to sustain for an extended period of time without the intervention of a teacher or anyone for that matter. I could be wrong though. To be able to hear him say exactly how he began to view the world as slightly skewed, all of it makes for a sobering 40 minutes of time.

Here's the kicker for me. While my boy was being teased mercilessly at school, while his grades dropped, while the now very recognizable fledgling signs of schizophrenia were manifesting, while I was hearing over and over the "I don't know's" and the "I can't remember's" that made me crazy, I was busy at home grounding him from any and all things in an effort to force him to get better grades, to shape him up, to make him take responsibility. We fought a lot and I didn't bend much. What absolutely KILLS me is that I didn't know about the bullying, I didn't know about the schizophrenia, I didn't know about any of it and there I was making his time at home miserable too.

So, Thomas was under a lot of stress at a very key point in his life. It was 8th grade, he would have been about 12 or 13, and beginning puberty and often that is when the first signs of schizophrenia manifest. He was fighting a valiant fight for his sanity and was losing. We found the clues to the delusion formation yesterday but now what do we do? The plan is for more detective work, my feelings are mixed. While it's interesting to find the beginnings of the delusional thinking, I find it painful to make Thomas relive some heartbreaking moments in his life in an effort to find them. Perhaps there is silver lining in all of this. I don't know. Time will tell.

Thursday, September 19, 2013

I Did Everything I Could

In light of what is happening in the news and the debate over why no one got this man help sooner, I thought I would share a little story with you.

Back when Thomas was in school and was getting sicker and sicker I was down at the school a couple times a week talking to “the professionals” and firing off emails to teachers letting them know that Thomas has schizophrenia and that he was really struggling. I had a couple of teachers on board with me who kept a close, caring eye on Thomas and emailed me regularly to tell me what they were seeing.

One day, for an English assignment, Thomas was supposed to write an essay. What began as a simple high school English assignment became a manifesto written by my ever-worsening son. It outlined how he understood the world and where he saw his place in it. Frankly, knowing how sick he was, it scared me to death to read it. It was exactly what I said it was. It was a manifesto.

I personally took it to one of the school “professionals” and sat silently by as he began to read it. I sat there getting sicker and sicker because I knew that this showed how sick Thomas was and I was just waiting for him to stop and tell me that they would like me to take Thomas out of school. Within moments of starting to read it he began laughing.

L-A-U-G-H-I-N-G.

I was STUNNED. He told me that this was the type of thing that they used to write in college and he handed it back to me.

Let me take stock of the situation here for you. Thomas had schizophrenia, he had been being bullied at school (which the "professional" knew about) but it had seemed to get resolved (but still), he was friends with a kid who it was well known that his father owned a massive arsenal of guns and he had just written what amounted to a manifesto about how he felt the world should be. ALL OF THESE THINGS THIS SO-CALLED “PROFESSIONAL” KNEW ABOUT AND HE SAT THERE LAUGHING.

I couldn’t breathe. I got up, took the writing along with some other things that Thomas had written that were concerning but that the “professional” looked at and didn’t care about, and I went and got in my car. I called Thomas’ therapist and told his secretary that I needed to see him right away and give him something and she told me I could bring it in and she would give it to him so I went in. Luckily he was just getting out of a session and he had me come in his office. I handed him everything to read and he read it and very appropriately told me that this was something of grave concern, that it showed “grandiose themes” and he wrote a letter to the school explaining just how sick Thomas was. He and I both felt that would then make them take me seriously. I hand delivered it to the “professional” and waited for him to read it.

After reading it he told me he would write a letter to all of his teachers explaining that he had a letter in his office about Thomas and his illness and that they could come down and read it. Let me say this. Out of 8 teachers, 3 came and read it, the rest apparently didn’t care.

So tell me this everyone. As my very schizophrenic child’s mom, had I not done everything I could to warn the school that he was struggling? I had been down there multiple days in 2 weeks time, most of which the “professional” wouldn’t take me seriously, I had provided written evidence from my son that he was sick, I had provided therapist letters, I had explained many things to him and still he did not take me seriously.

The question then is this:
Had Thomas gotten sicker and had he gotten (let’s say) ahold of a gun from his friend, had he come to school and shot the bully or a teacher he didn’t like, then HAD I NOT DONE EVERYTHING TO WARN THE SCHOOL AND HADN’T THEY BLATANTLY IGNORED THE SIGNS???

This is exactly the point of my story and my opinion of why people like the Naval Yard shooter slip through the cracks. In the worst situation someone was showing signs that everyone ignored (like in his case) and in the ABSOLUTE VERY BEST situation a mother went down to the school, provided all necessary documentation that her son was struggling and was IGNORED.

THIS IS WHY PEOPLE HURT PEOPLE AND EVERYONE SITS AROUND LIKE WE ARE ALL DOING RIGHT NOW AND ASKING “WHY DIDN’T SOMEBODY DO SOMETHING???????”

In Thomas’ case, he ended up hospitalized never having hurt anyone. I do not believe that he would have hurt someone, not the boy I know. But the truth of the matter is, if he had gotten sick enough, it wouldn’t have surprised me one bit if he had done SOMETHING, snapped in some way. Maybe he wouldn’t have shot someone, maybe he might have just punched the bully that had been harassing him but MARK MY WORDS, had he reacted in any way you just know that the school would have been right on top of that, speaking in the press about the schizophrenic kid who flipped out in school and somehow everything I had done would have been pushed aside.

Don’t get me started on what the aftermath might have been like. The point is, people need to take people seriously when they speak about hearing voices and feeling paranoid, or when a mother provides evidence that is concerning, directly to the school “professionals.” This is not something to be laughed at or ignored. People need help and we, as a society, are dropping the ball.

Wednesday, September 18, 2013

Anonymity

I know that you are going to find this hard to believe given the fact that I write this blog but I want to tell you something so that if you're feeling isolated, you won't feel like you're the only one.

I was out walking yesterday through my neighborhood and I passed by the houses of my neighbors, 4 of which have children Thomas' age that went to school with him. There is one man in particular that I have always felt close to but I often have a hard time talking to him. The reason being that a couple of years ago he lost his beautiful boy, Thomas' age, in a horrific boating accident and I have just never been able to find the right words for him. For a long time I wept for him because I couldn't imagine what it would be like to lose Thomas. With the boys being so close in age and with them being my nearby neighbor I felt his loss a great deal.

Fast forward to less than a year ago when in a whirlwind 2 weeks time, Thomas was hospitalized twice and diagnosed with paranoid schizophrenia. As most of you know, there is a loss in that. I don't pretend to think that actually losing a boy to death is the same as what I am going through with Thomas but I think the grief process has been very similar. When I see this man I want so badly to go up to him and tell him that I have lost my son to a terrible fate too and that I can understand some of what he's going through.

Herein lies the difference for me though. I think so often of telling our story to him but there is always something that stops me. Here we are in a tight-knit community and I am scared to death to tell him that Thomas has schizophrenia. It's not like it's some great big secret that Thomas struggles with something since Thomas' absence from school a lot of last year and the fact that he threatened suicide on Facebook was pretty well known in his circle of friends but there is something so much different about telling somebody your loved one has schizophrenia, especially in a small town. I imagine that man telling the story of his lost son is met with the usual responses and his death, as horrible as it was, has a strange sort of meaning in it. Everyone understands death. Not everyone, in fact very few, understand schizophrenia.

It's never been easy to tell people that Thomas is sick because people just don't know how to act, they don't know what to say, they don't know what to ask and I imagine that a large majority understand schizophrenia as the media portrays it and that is as--for example--a man who shoots up the Washington D.C. Naval Yard or the "famous hiccup girl from the Today show" who murders her acquaintance. People want to think the worst or in their very best moments know no different than what they have heard and are silently afraid of the very word "schizophrenia" and just don't know what to say.

So yesterday as I walked past that man and smiled and said hello, I ended up, once again, staying silent about the truth of my life for fear of the judgment that could rain down on Thomas once the rumor mills of my little neighborhood kick into high gear. I sit here in anonymity, writing mine and Thomas' story to all of you because you are here by choice, either because you know someone who has schizophrenia or you are seeking to understand it. I'm not afraid to speak out here. It is here that I am home. What's sad to me, is that my physical home is a quiet island in my neighborhood where everything looks normal on the outside but inside a storm rages. It is my hope that there will come a day where the proverbial sun will rise, people will be enlightened about schizophrenia, and my home will become just another house in the neighborhood where two neighbors who have lost their sons in different ways can find comfort from each other, no matter the nature of the loss.

Tuesday, September 17, 2013

Sobering Up

A couple of weeks ago Thomas' therapist gave him a test to fill out measuring what delusions he had and how much they disturbed him and how much he believes them to be true. I was given the same test to read through while he filled his out and we were seated in such a way that I was able to see what his answers were. While I was happy to be able to see them I also became more and more horrified as we went through the 40-question test. I couldn't believe the things he believes and worse yet I couldn't believe how much they disturbed him. I think that was the most painful thing of all to witness was that some of them scared him a great deal.

After the session I went home and looked the test up online and went through it again and read every one. The thing about Thomas is that he doesn't fall into the usual categories of delusions meaning he doesn't present as the "typical" schizophrenic, at least not the ones I had known in my life. So, true to form I fired off an email to his therapist asking him if Thomas was really schizophrenic. I have written a handful of these emails to him when things didn't quite match or his therapist had seemed to me to play down certain symptoms and here I was again hoping like crazy that the email I would get back would say, "It turns out Melanie, that no, he is not schizophrenic" and then I could walk, no RUN, from this diagnosis and get my boy back. There would be no such email.

The next session we began going over the test together. As we went through it we discovered that some of the answers he had marked were delusions he had when he was younger that had resolved themselves. The more of those we found, his therapist and I were visibly relieved and I won't deny that I started thinking yet again that maybe he's not schizophrenic after all!

Then we got into the territory of the themes that had presented themselves when we first learned of the depths of his illness less than a year ago. He repeatedly confirmed their existence, confirmed that he very much believed them to be true and he felt terrified about most of them. It broke my heart, shattered it really, because it proved that he did in fact have schizophrenia and once again I felt there was no turning back from this cruel diagnosis and I sat back in my chair and fought off tears.

His therapist then began asking questions about the specific delusions that he had named and what is absolutely striking and knocks me back EVERY SINGLE TIME is that when you ask Thomas about these things that he believes, he becomes a whole other person. He sits straighter, his eyes become steely, he clenches his teeth and his voice is filled with utter conviction. And then there it is. Those very well built, impenetrable delusions that I have rarely, if ever, been able to break through.

Delusions are the one quality about this illness that never cease to shock me. The conviction to which he holds them and his complete personality change when talking about them cause me to do a double take every time. On top of that my heart gets broken all over again and I succumb to the grief, reminded that he does in fact have this illness.

It is so unfair. It is unfair for him that the world he lives in isn't an accurate representation of the real world, that he is terrified daily because of what he believes and that he feels the need to defend his world with such tenacity because he needs to hold onto it to survive.

It is so unfair, too, that I will never again, though it won't be the last time I hope for something different, see the boy I once knew. Sometimes I think to myself how very similar Thomas and I are because I think it takes some delusional thinking on my part to keep myself in the world that I live in where he is fine and everything's going to be ok. The truth is though, I'm finally sobering up.

Monday, September 16, 2013

The Mentally Ill Circus Act



There is nothing more fun to me (because I've built a sizable sense of humor about it) than to give my family mental health history to psychiatric professionals in my own life and now the ones coming into Thomas'. I've become so used to the wide eyes and the open mouths and the disbelief and the questions and ultimately the shaking heads and sympathetic looks. When you come from my family history, all you can do is laugh because c'mon, what's the alternative? I got over my horror years ago so I'm good but now that we're building Thomas' history in his records, I get to be reminded, and now he gets to experience, the sympathetic, speechless reactions.

For the sake of better understanding let me list a few things that run rampant in my family:

Depression
Bipolar disorder
Anxiety
O.C.D.
P.T.S.D.
Delusional Disorder
Narcissistic Personality Disorder
Dissociative Identity Disorder

oh yeah and let's not forget the all-important

Schizophrenia.

There are many more undiagnosed but glaringly obviously mentally ill family members in the family tree but you can see now why Thomas has schizophrenia. It really was just a roll of the dice when he was born and I spent years wondering how it would all work out in the end for him. He fought depression and anxiety for years so I thought, since I had, well, HAVE those things (I'm actually Bipolar II), that that was going to be his lot in life too. Little did I know that the depression and anxiety were just masking the burgeoning schizophrenia.

So what chance did he ever have of getting out of this circus act of a mentally ill family unscathed? Really, I don’t think he ever had a chance. The genetic ties to mental illness alone were a psychiatric death sentence and then to be raised in a household where bipolar disorder and all of its accompanying effects on the world around someone who has it was another black mark. What gets me though is the odds. The overwhelming majority of illness in my family is depression and anxiety, why did he have to end up with the worst possible illness? Why did my sweet boy have to not only battle the nastiness of real life but also have to endure the cruelties of schizophrenia??

They say that you are only given what you can handle. Perhaps Thomas has a strength beyond imagining and will make something of his struggles. Perhaps there is something up ahead that will test him that he will pass with flying colors because his genetic lot in life prepared him well for it. Time will tell but in the mean time he works hard at overcoming each thing that schizophrenia throws at him. I’m proud of who he is and as he battles the stones and arrows cast his direction, I will be there every step of the way, me and all of the rest of this family fighting battles of their own against mental illness. One thing’s for sure. Thomas is not alone.

Saturday, September 14, 2013

Warning Label

After my posting yesterday about Thomas being put on an anti-depressant (Wellbutrin), I got a lot of responses both public and private warning me to keep any eye on him. It's funny how you sit through the litany of drug commercials on TV and you hear the side effects of them but you don't really think about it unless you're taking them yourself. And I will say this, that I was once on the same anti-depressant that Thomas is now on and the first time around had great success with it, not so much the second time though.

What was mentioned to me by others was a common side effect but to hear about it directly from people with schizophrenia or from people who love someone with schizophrenia, it holds more weight and after reading everything it stopped me in my tracks.

A. I need to watch him for suicidal ideation. This is number one, top-of-the-list the scariest warning I got. Again, I have heard all the commercials before but never applied it to anyone. Now here I am with Thomas who's already fighting a low grade suicidal ideation and he's taking something that might increase that??? Terrific.

B. The other thing I heard was that it can increase hallucinations. To me that opens up a wide range of worries because I have to wonder IF that's going to happen and IF it does, how will they manifest? Will he tell me? Will his delusions not allow him to tell me? Will the hallucinations not allow him to tell me? Dear God, what exactly is going to happen?

Hopefully nothing but the warnings from multiple sources does scare me a great deal.

My experience thus far with Thomas (he's 2 pills into this) is that nothing has changed and his "trapped" feeling is still there and yesterday he seemed weary from fighting some inner battle. I'm getting scared (anti-depressants or not) that something bad is happening. He is surrounded by triggers for his "flavor" of delusions and paranoia and they're not going away anytime soon and they are taking a toll. I'm a bit scared that the Wellbutrin is going to give energy to them and he's going to end up in a worse place. There are warning signs that he's going to the bad place one of which is that he hasn't showered in days. This from the kid who had been on a strict self-imposed shower schedule for months now, unless of course he's been in the middle of a serious psychosis. So for me, him not showering is a screaming neon sign that something is definitely on the horizon.

We'll see what today and another pill brings. My gut is screaming that this is a huge mistake but my brain tells me to give it some time. All of the stories told to me about people with schizophrenia taking Wellbutrin were not horror stories so I want to (uh oh here we go) keep a watch and wait approach on this one. My hope is that Thomas is one of the lucky ones that it works for.

Friday, September 13, 2013

Oops I Did It Again

Yesterday Thomas had both a meds appointment and a therapy appointment. As usual I came into the meds appointment and didn't keep my mouth shut. I'm starting to get ticked at the meds guy because--and I understand, but still--he doesn't seem to be taking Thomas' symptoms seriously enough. He says he doesn't want to "throw the kitchen sink of meds at him" but I think waiting and watching has run it's course. Everyone else in Thomas' life thinks he needs some more/different medications except for the meds guy!!!

Now, you know, because I've posted before, that I want Thomas to make his own decisions about what he puts in his body but I also know that he doesn't always remember how much he suffers and he is also so sweet and accommodating to authority figures so I think he just kind of lets things slide that shouldn't slide.

So, admittedly, I pushed for Thomas to be given an anti-depressant. Bear in mind that I am not running a one man show here where this is concerned. Thomas' therapist thinks he should be on an anti-depressant also. I actually wouldn't have spoken up at all if I didn't have the backing (and the 4 worrisome family sessions trying to sort out the myriad symptoms that Thomas has been dealing with lately that are concerning) from his therapist. This guy is a Ph.D. and he's been in the game a long time and while he doesn't hold an M.D., I still trust his judgment when it comes to meds.

There we sat in that meds appointment and his meds guy was doing everything to keep in the watch and wait mode and I was telling him that Thomas had been suicidal and his response, which is right and fair, was for Thomas to call/talk to someone and then go to the E.R. However, no matter what I said for a large part of the appointment about how Thomas has been clawing at the pit of depression trying to get out, he kept holding off. Then something I must have said stopped him and he directly asked Thomas if he wanted to take an anti-depressant and I could see the visible relief in Thomas when he said that yes he would definitely like to try them. I'm not personally crazy about the anti-psychotics but come on, an anti-depressant isn't going to sink the ship (unless he's bipolar which is possible). All we can do is try. Isn't it worth his life to give it a try??

So, this morning he started on Buproprion, a tried and true anti-depressant. We'll see how that goes. I also pushed the envelope on this whole "trapped" feeling Thomas fights which to me is more debilitating than the depression however meds guy wanted to "watch and wait" on that one too. He did, however, throw out on the table the possibility of medication to "calm his mind." He says there is stuff out there that will smooth things out. First we'll try the buproprion and then see what happens next.

 Now let's "watch and wait." Now let's give it some time. NOW that he's got something on board to help the ever-worsening depression I can sit back a little and feel better that there's something at work to alleviate the depression. But, I did it again, I didn't keep my mouth shut but I wasn't about to after what I have been witness to with Thomas lately. He happily took the new pill today and says he's ready for something to work so here's hoping we all get what we want. A little bit of light in the darkness.

Thursday, September 12, 2013

Update On Thomas & My Dad

Hi! I have to say that I am happy to be back here in front of my computer and not on my tablet in some cramped, sad hospital room. A little bit of normalcy is very much needed after the events of the last week+.

First, thank you all for your kindness and caring and for letting me off the hook from the page for a few days while I got back on my feet. When I read each of your messages to me as they rolled in I cried because it meant so much to me that you cared. I'm hoping it won't be long before I can get back "in the groove" and begin writing regularly again.

A quick update on my dad. He is out of the hospital and as of today is in a rehabilitation facility. He has a long recovery ahead of him. I just got back from a meeting with all of the department heads of the rehab facility and they're saying that it'll be a tentative 4-6 week stay for my dad but maybe longer. While this is heartbreaking for us because every time we leave my dad he thinks we're leaving him in there forever, it's also very positive because we know he is in EXCELLENT hands while we're not there. So, right now I am finally breathing a little better after so many days of forgetting to come up for air.

As for Thomas, where do I begin? Let me just say this for now. He is struggling and rides a rollercoaster of changes in mood where he's reasonably ok and then in the depths of depression and agitation. Some of it I'm attributing to the chaos going on with my dad and the fact that I'm in and out of the house a lot lately and am not home with him (which he says he's hating) but a lot of it was there before all of this began with my dad. There is so much to say and not a lot of time at the moment to say it all. The picture I can paint of what I see from my perspective is a young man under an immense amount of stress. His face is completely broken out in acne (it had pretty much cleared up there for a few months) and he's got a look in his eyes that's blank but also a bit like he's fighting some inner demons and trying his best to keep them from escaping. I sat with him today in the waiting room of the doctor's (there's a change in meds I'll talk about later) and I looked at him and he looked exactly like the night I sat in the E.R. with him...very focused on a point in front of him, dead calm and expressionless and quiet. There is obviously something getting to him but true to form, he's not talking. It's ok, I'm trying to give him some space to find the words and all of his professional people are keeping a close eye on him. We're coming up on the anniversary of his first hospitalization and diagnosis of schizophrenia so admittedly I'm on high alert and it doesn't help that he seems to slowly be going to a bad place. I have to wonder if the season change has anything to do with it at all or if this is just the way it is, the natural course.

At any rate, I need to close this posting and get him off to therapy now. I should be back in the game here on the page a little more as the next week progresses so I'll be back letting you know how Thomas is doing.

Friday, September 06, 2013

What Is His Secret??

I am about to say a very mom-like thing that would embarrass Thomas but it has to be said. Lately he has been doing the cutest thing. Sorry, it had to be said because that is what it is. Cute.

Here is what's happening. ...


I have caught him in the last couple of weeks in random, quiet moments by himself smiling this smile like he has a secret. It's a genuine smile that brings the corners of his eyes in with it. A few times I have asked him why he's smiling and rarely does he have an answer. What I get is his standard "I don't know."

I have to wonder, though, what is it that makes him so happy? It's all really just speculation on my part but I look at his life and wonder what's changed that he finds some moments of joy? I think what catches me off guard is that he just doesn't smile much. He doesn't look like anything at all much. His face is usually set in one expression that gives little away to explain what might be going on in his head. So a smile, a real, genuine, "cat who ate the canary" smile is like an exotic bird found in the furthest regions of a darkened, tangled, rainy jungle. Each glimpse for me is a breathtaking moment, giving me a quiet joy of my own. My boy, my young man who has suffered so in the last couple of years, has a secret even he can't name that brings a smile to that handsome face of his.

So, each time I see it I say a little prayer, hold a little bit of hope inside that he is finding bright, colorful flowers among the weeds of schizophrenia.

Thursday, September 05, 2013

Hard Core Honesty (A Frank Post About Suicide).

I am going to admit something to you all because there is a mental health awareness event going on right now and I'm somewhat avoiding it and since I'm doing that I want to explain why. There is no real intelligence behind why I'm avoiding it, more cowardice and denial than anything. This is suicide prevention/awareness month. This is a topic of serious importance in my life and I am not proud that I avoid it but let me explain why.

For starters, I have had extended family members in my life that have been suicidal, one even as recently as a week ago. It scares the crap out of me. It scares me so much that I want to hide from it and say prayers till my throat is hoarse and the tears have dried. Beyond that, what got Thomas hospitalized less than a year ago was a threat he posted on Facebook threatening to kill himself. That brought me to my knees and I never recovered from that. Right before that, a little over a month before Thomas, my beautiful angel niece who is seriously bipolar heard a voice that told her to kill herself so she took an entire Costco size bottle of Tylenol and darn near succeeded in ending her beautiful young life.

Now, in the interest of keeping this page honest like I vowed to do so that no one would feel so alone, I have to say that for years I was very depressed and always felt that suicide was an option and in my younger years even attempted to end my life more than once. It was a terrible place to be, so desperate to end the torture of depression and a life I hated living. I even believed completely that my beautiful Thomas would be better off without me. So you can see, I was in a pretty terrible place if leaving the boy I am dedicating my life to now seemed like a better option than staying and seeing him through his formative years and into adulthood.

Then last year Thomas began to fall apart. Every fiber of my being told me that I needed to be here for him and so I made the decision to live. I chose life instead of death. I chose Thomas over my own darkness and somehow realizing that my life was his too, the light came on and there has not been a day since that I've looked over the edge into the great beyond and felt that place was better than this.

I tell you all of this because I want you to know that I speak from experience about suicide. And yes, I should be out there on the front lines fighting for awareness. But I am scared. I'm not ready to utter the words aloud beyond what I'm doing today because I am terrified that I am going give life to that most tragic option in my life be it for my loved ones or God forbid Thomas or myself.

It's a cowardly stance but it's where I am and right now, especially in this time when it should be shouted from rooftops that the option to take your life is not an option at all, apart from today I will lurk in the shadows. I am giving you the hard core truth about my life. I am telling you that choosing life for yourself and consequently for your loved ones is the only consideration there is and I am telling you, most importantly, that I am a survivor at least 4 times over and I thank God constantly that I'm still here, fighting for myself and most importantly for my boy who can't always fight for himself.

Wednesday, September 04, 2013

My Wish For You

I was thinking this morning as I laid in bed about the stories that many of you have told me about the struggles that you go through with your loved ones with schizophrenia. So often I have read them and thought how hard it must be for you and I have realized that Thomas and I are nowhere near where you are in your struggles. I know that he is fortunate as am I and it is not lost on me that there are those of you really struggling from day to day. I know I've been in the trenches like you but often lately, in the scheme of things, our struggles are small and relatively manageable compared to yours. Today I just want to let you know that I am thinking of you all and praying for you and I hope for better days for you all.

Tuesday, September 03, 2013

Letting go of EVERYlittleTHING

I realized after my posting yesterday and after going through the day with a pretty happy Thomas, that my thoughts on this akathesia thing are probably wrong. I am guilty of wanting to take away all of his suffering that I look at every little thing and try to label it so that I can fix it. It's always been so easy in the past. 

Skinned knee? Neosporin and band aid.
Friends were mean? A hug and reminder that they're not worth your beautiful presence in their lives. Hungry? Cheese and crackers.

Well, you get the point. My life's work has been about hunting down and fixing problems.

Then yesterday as I was looking at old emails from a friend I miss a great deal, I found the email exchanges between me and Thomas' therapist among them. We had been batting ideas back and forth as to what this was, this boredom, this "trapped" feeling of Thomas' and he had come up with that it is a function of his depression. So I don't know anymore. He was fine yesterday, no akathesia (if that is even what it is) and he had a decent day on top of that.

I am out of ideas as of right now. Obviously I've exhausted my limited knowledge on the subject and I'll lay it back in the hands of the doctor and meds guy. In the meantime, I hope that it doesn't eat Thomas up from the inside out. When it's bad, it's bad, and any amount of stress causes, all to often, the delusions to increase and the anxiety that generates hallucinations to appear and this "trapped" feeling most certainly generates stress for him.

I want to help and it's only natural as a mom to want to try but I also know I have to let go of EVERYlittleTHING that is out of my control and that I can't fix. That's not going to be easy.

Monday, September 02, 2013

"Trapped"

I'm not sure I've mentioned it here before but Thomas has been fighting a "trapped" (his word) feeling. His behavior in those times is like that of a caged animal. He's anxious, he's a bit agitated and really mostly just miserable. He says he only feels that way when he's home which kills me because I am hating that it is in our house that he feels so uncomfortable. Myself and his doctors have been on the case trying to figure out why he feels that way and none of us can come up with anything. Honestly, a part of me is wondering if he is being taunted by voices or hallucinations that he denies having. Which doesn't mean anything because he's kept that from me in the past.

Then last night for some reason the word akathesia came to me. Akathesia is a syndrome characterized by unpleasant sensations of inner restlessness that manifests itself with an inability to sit still or remain motionless. It apparently, in severe cases, causes discomfort in the knees. Strange huh? Well, I went to Thomas with my new information and asked him if the feeling is in his knees along with the other things he has talked about and he said that it was a little bit. So since he was downstairs watching TV in the same room as the treadmill, I told him to walk on it and see if the feeling went away.

Lo and behold it seemed to work! He hobbled along at a slow pace and watched TV and when I went down to check on him, his lopsided smile that greeted me let me know that he was doing better. Maybe, just maybe, we're on to something here. I had tried treating it with some of his lorazepam first, thinking the trapped feeling was anxiety but all that did was make him feel a little better but mostly just sleepy and still trapped.

I'm calling his meds doc tomorrow and seeing what he can do. Apparently akathesia is a side effect of the antipsychotics which seems particularly unfair because he already deals with so much that he doesn't need feeling trapped thrown on the pile. I'm hoping something can help this because if Thomas isn't going to be working and he's not going to be on his feet somewhat alleviating this feeling for himself then he needs some sort of something to make this stop and decreasing the already not-fully-working antipsychotics is not an option in my opinion.

So, poor Thomas will have to wait a day or so in his cage, pacing and "trapped" until we can get something to help him. I'll say it again and I'll say it a thousand times in the future. Schizophrenia is a cruel illness and its treatments aren't so nice either.

My Most Popular Posts...

Follow my posts by Email:

Follow Me On Twitter