Tuesday, December 17, 2013

I Have No Words.....

In some ways this will be a tricky post to write because what started my day was a talk I had with Thomas. I learned so much about what his delusions contain and I can't talk about them here. Let me just say this, I have apparently been living in the dark about him because what he told me knocked me backwards quite a bit and I left a bit disoriented right now.

What I can say is that his job is causing him increased paranoia. He told me that when he started his job he was at a 0-1/10 in his paranoia and he is now a 5/10 and for him a 5 is incredibly high. He left work early on Sunday because he couldn't manage the paranoia anymore and he had to get out of there right away. All of the usual culprits that increase paranoia are there. Between the crowds of people shopping due to the holidays, him having to go outside in the dark and gather carts alone, and most importantly and most telling, the security cameras in the store are causing him a immense amount of paranoia and accompanying anxiety. He is suffering terribly and came to me yesterday a defeated young man and was desperate for some relief. He said he felt that his Geodon is no longer working and he's scared that nothing will ever work for him for very long. I told him that many people with schizophrenia suffer the same fate, discovering that a medication only works for a short time for them and then they find themselves quite sick again and needing a new medication.

What I can't say here is information about who he believes he is, who he really is (not who he is as my son but who he believes he is) and there are many other things that are very scary that I just flat out cannot even come close to figuring out how to help him with. I am completely dumbfounded but at the same time now have explanations for things that I have seen in him that I previously couldn't figure out about him.

With that said, let me move on to his appointment with his PNP (psychiatric nurse practitioner) Chad. We went in and I handed him the notes that I had taken while I was talking with Thomas earlier in the day. I also asked him if he had read the letter from Thomas' therapist and he said he had. He took my notes and read over them and set them down and turned to Thomas. He told him that he wants to put him on clozaril. Now, I am aware of this medication, I know it is considered a "last resort" medication and Chad even confirmed that to me. He pulled no punches with what he said next as he outlined the risks of the medication. He told us about the weight gain and the sedation and inevitably about the damage it can do to Thomas' white blood cells. In a moment I will never forget, he looked straight at Thomas and he said,

"The odds are it will be ok but (and here is where I lost it inside) it could kill you."

I looked at Thomas in that moment and watched as fear and something I don't have words for washed over his face and he said a quiet, "OK".

Chad continued to outline side effects and that since Thomas had reacted so strongly sedation-wise to his Geodon (apparently Geodon is one of the meds that usually doesn't cause much sedation) that in all likelihood Thomas would fight off serious sedation while titrating up on this medication. Then he asked Thomas,

"Are you on board with this?"

"Yes, I am." came a quiet voice from Thomas.

Then...as if what I had already learned about Thomas' inner world and his fight to stay at work wasn't enough...as if being told he could die if he takes this medication wasn't enough...Chad then informed us that he was leaving the practice and 2 others there would be going with him. He told me that the second opinion from a psychiatrist that Thomas' therapist had recommended wouldn't be possible here in the valley because there is only one and they are in his practice and they are completely booked into the forseeable future. He also looked straight at me and said with disgust,

"I wouldn't even recommend this person anyway and even more so this entire operation (which includes our one and only psych ward in the area)."

Now, I have heard there was some unrest in the practice but having heard Chad say he wanted nothing to do with the operation let alone that he was so unhappy there that he was leaving on January 3rd scared me to death. So now, not only was he about to throw us to the proverbial wolves by prescribing clozaril and not remaining in the practice to follow Thomas' progress but he was giving us nowhere else to go for help.

I told him that I would drive elsewhere to find help for Thomas and Chad recommended a doctor in a far away town in the same office as my psychiatrist and he said he would try to get him an appointment with this man but it would be hard because he can't really fill the doctor in on Thomas. was he kidding me??????? I then asked him,

"Can Thomas sign a release so that you can say everything you need to say to this doctor so that he will hopefully better consider taking Thomas on?"

That thought hadn't even crossed his mind (which scares me because c'mon, he's the professional here, it shouldn't take little ol' me to come up with that) so he pulled a release of information out and I made Thomas check every box on it so that there was nothing Chad couldn't talk about.

After that Thomas and I went out to the parking lot and I called my psychiatrist's office and asked for her and ended up leaving a detailed emergency message with the receptionist asking my psychiatrist to help us get an appointment with this doctor that Chad recommended. That is when the receptionist said to me,

"Oh, he's not taking on any new patients right now. He is booked."

 What? WHAT?!?!?!? Seriously?!?!? So there are no psychiatrists in my area that can see Thomas???? Who is going to follow up on his
clozaril? We're seriously going to start this very serious drug with no professional back up??

I left my message anyway and desperately asked the receptionist to have my psychiatrist call me.

Then we went to the pharmacy to fill the prescription. Within minutes the pharmacist tracked us down in the store and told us that they couldn't fill the medication because they aren't on the national registry and they had called another pharmacy in town that tends to handle specialized medications and they, too, are not on the registry and not only that but They don't know of anyone in the area that can fill the prescription!!"

Oh. My. God. Seriously?????

So now what? I got back on the phone with Chad's office and told them what was happening and Chad called me back a few minutes later and I explained to him what was going on and he told me he would call me back. When he did, he had found a small, obscure pharmacy in town that would fill it so in the darkness and coldness of the night I drove over to that pharmacy to give them the prescription. Oh my God you would think I was trying to buy crack or something the way they handled me and the prescription. Ultimately they told me they wouldn't fill it until they had Thomas' blood tests (which we got done after seeing Chad) and that they would call me tomorrow.

So here we are right now, a tattered flag hanging on by it's last strands in a hurricane and today I am beaten down but am in fighting mode. I have calls in all over this town and a town far from here trying to get my boy some help. My hope is that everyone will get back to me today. Somehow I don't see that happening.

As we were driving home after all of this Thomas sat next to me in the car and he grabbed my hand and squeezed it tightly and he said,

"I'm very scared mom."

And I said to him,

"So am I kiddo but we'll get through this together. I am not leaving your side for even one second ok?"

And he said ok and then quietly piped up,

"Mom, I don't want to die."

There it was. My worst fear, my saddest moment for my suffering son. He sees that he could die and he's scared but he's suffering so much from his paranoia that he's willing to lay down his very life in order to feel better. He is my hero and he is brave beyond comprehension and I will never ever leave his side.

Friday, December 13, 2013

The Otterbox Distraction

I spent my day yesterday leading up to therapy talking with Thomas about how he feels he's doing. I learned a lot and also got an explanation for one of his social media postings. What he had written, I felt, wasn't something I needed to be as concerned about after talking to him so as we walked into therapy and sat down I led with that, explaining it like T...homas had to me. I was met with a similar response to the email and his therapist reminded me that what had been written was very much of importance and part of the illness. I was so disappointed. As always, I try to look for more "normal" explanations for the things that I see and once again I was reminded that it wasn't normal after all.

I sat there listening to the conversation and questioning of Thomas, peeling the Otterbox case on and off of my phone. I needed something to do with my hands because what I was hearing I just couldn't assimilate into my emotional state. I had told Thomas that I had carried on an email exchange with his therapist and I told him what he might expect for session and I think that helped him to open up even more honestly about what's going on inside of his head. He confirmed for his therapist much of what I had said and went beyond that to explain where his paranoia level was and how much it disturbed him among other things.

It turns out that his paranoia was much further reaching than I had thought and he confirmed to his therapist that he felt that the Geodon he is on had taken it away for a few weeks but that it had come back with ferocity in the last few weeks. He went on to explain his triggers and how he couldn't stay away from them but very sweetly agreed that if I was around and noticed the triggers were around that I could remove him from the situation. This is what I feel so blessed about with Thomas. In one respect he is quite sick and when it sucks him in he rides the wave and apparently doesn't either know how to get off of it or isn't aware enough of what's happening to get off of it by himself. What is such a blessing is that when he realizes he's sick, he is amenable to me helping him. I know I'm very lucky with that but knowing that fact puts a great deal of responsibility on me for the maintenance of his mental health. I realize now that I will always be a part of "talking him down" and that while on rare occasions my worry and concern aren't warranted, more often than not it is very much needed and I do need to spring into action in some way, shape, or form. If only I could hold onto that in tough times and not start second guessing myself like I so often do.

Then came the toughest part of the conversation for me. Meds. I had already talked to Thomas about expecting a change in meds on Monday and he was fine with that surprisingly but his therapist took it one step further. He went back through Thomas' charts and went through all of the meds that Thomas had been on and repeated them all to us. Somewhere along the way I had forgotten just how many he has been on that had failed and I began to feel a bit hopeless about the situation. Then his therapist said it, the thing that as he said it I realized that while I know others have been through this, I guess I felt it really didn't apply to Thomas. Or maybe it was just more wishful thinking. He explained to Thomas that he will eventually end up on a cocktail of medications saying that it would take an arsenal of different antipsychotics to knock out the unresponsive paranoia and other symptoms. He said he felt that each one worked in different ways and since Thomas appears to be treatment resistant that it might take so many meds to get that under control.

There it was, the jump into the deep end where Thomas and I would be once again swimming for our lives with the bottom of the pool too far away from the bottoms of our feet to find our footing on. And so there it was, stated out loud for all of us to hear, the truth that I work so hard to deny. Yet again the words "treatment resistant" were thrown out and along with those came "meds changes" and "uncertain future."

I was drained and Thomas looked a bit defeated and at the end of the session I slowly clipped the Otterbox case back on my phone and gathered my things and my boy to go home. I had written those emails a worried, but apparently in denial mom, and I came out of the session with confirmation that we are now headed into another round, another episode, another meds change, and another fight for Thomas' sanity.

Sunday, December 08, 2013

Why I Stay (Part IV in a series on families affected by schizophrenia--"A Crack In The Foundation")



I know for some of you (and often my mom too) it's not easy to understand why I stay with my husband. My mom always tells me she loves him but he's got some qualities that are maddening. Nobody is perfect, including me, and so I cut him some slack. What I haven't told you are the reasons I stay and it's those things that keep me where I am.

While he doesn't have much und
erstanding of schizophrenia and how it manifests in Thomas even though I've tried to explain it a hundred times, he has these amazing moments when it comes to Thomas that I can't deny. Last year when Thomas was suicidal and the police showed up, I wasn't home, but he was. After the police left he sat with Thomas and held him and talked to him about how tough life can be sometimes and the two of them cried together. He remained with him until I got home and then we sat and talked as a family and along with me, encouraged Thomas to go to the hospital to get some help. He was there when I wasn't and had stepped up in a big way. He had every opportunity to make Thomas' life more miserable and instead found a kind of love and support for my suffering boy. Even in our worst times as a family I remember that.

When Thomas had his psychotic break in May, it was my husband who got up and found him trapped in his room. He came and got me and was so scared for Thomas and helped me help Thomas find the courage to leave his room and again go to the hospital. He was there in that moment and I was grateful for that.

Where he fails miserably is in sustaining that compassion. Let's face it, he fails miserably when it comes to sustaining anything emotional. He is a very closed off man, very very rarely even in touch with his own inner feelings, and it is in moments like the other day with the punching bag incident that he somehow, for reasons I still haven't figured out after 13 years of being together, finds those emotions and it becomes bigger than life and Thomas (mostly) and I pay the price as he unleashes everything he has squashed down for weeks or months at a time.

Thomas will always be the target of his outbursts because what my husband wants more than anything is for he and I to begin a life where just he and I can live without worries and just be together. He abandoned his own children for that reason and it's not surprising to me that he does the same to Thomas. It doesn't make it right, it doesn't make me happy but I understand that about him. We both had a different life planned for ourselves and schizophrenia came in like a wildfire and left the landscape barren. We are simply trying to rebuild a life with the new rules in place.

He's insensitive when it comes to Thomas in every day life and even stumbles with me a lot of times but he also does so much to contribute too. When times are tough and I can't get going to maintain the house or cook our meals, he does those things for me and Thomas. When Thomas wants Burger King and he's had a rough day, my husband will brave the 15 minute (yes, 15 minute) drive through time to get Thomas his triple Whopper with the exact ingredients on it that Thomas likes. He installs Thomas' air conditioner in his window every year and makes sure it's secure and Thomas feels it's secure so that he'll be certain that nothing and no one can enter his room from the outside. He takes the time to teach Thomas how to set up the entertainment center downstairs showing him step by step where each wire goes and why it goes in those places. 95% of the time when Thomas is sleeping in because he's had a late night and needs to sleep all morning, he is quiet around the house making sure not to disturb him so he can get his rest. When Thomas was having a tough time in junior high with his peers, my husband sat with him and told him stories from his own childhood in junior high relating stories to Thomas about how he, too, was bullied. I could go on but I've taken up enough writing space.

I absolutely HATE his insensitivity and I'm resentful when I can't get through to him but just like all of us, he has many good qualities too. Yesterday's posting won't be the last one about my fight to defend Thomas to him but I write about those times because it is my hope that someday we won't have fights like that and that someday he will accept the fate that has been given to us. ALL of us. My heart and soul will always be focused on Thomas and Thomas will ALWAYS be my first choice and if the time ever comes that I am through with the B.S., I will not hesitate to ask my husband to leave for good. One of my very best (and sometimes perhaps worst) quality is that I have hope and I have faith in the human race. I believe change is possible for anyone and I will never let that go. It's why I'm here. It's why I created this page. It's why I write. So many people told me there was no way I would succeed at changing people's minds about schizophrenia but I have since learned that I have done just that, changed minds and taught compassion. I have watched some crumble in the wake of this illness but even more so I have watched many step up and stand strong and I believe the same is possible for my husband someday.

So I stay. I stay with him, I stay with you, I even stay with the ones who have tried to bring me down and I will fight until there is nothing left to fight for and then, in the end, I will leave knowing I did the best that I could.

Saturday, December 07, 2013

The Punching Bag Bomb (Part III in a series on families affected by schizophrenia--"A Crack In The Foundation")



You'll probably hear stories like this out of me a few times before all is said and done but since I received so much support yesterday from you, some of you shared similar situations, with my tweet about being over dealing with my angry husband, I thought I would share what happened with you.

After having a hard therapy session with Thomas and learning about his fear of what might happen if he releases his anger, I wanted (as I said here) to get him a punching bag to release his anger on. Well, I came to my husband yesterday morning and I asked him about getting one. He initially balked at the idea a little bit and I told him that I would pay for it with my money thinking that would calm him down since he didn't have to put out ANYTHING to make this possible for Thomas. What ensued was yet another round of fighting about Thomas. You name it, he came up with it to be mad about.

It began with the punching bag. I told him how Thomas has a great deal of anger inside of him and he needs an outlet so I was getting him a punching bag and he got mad and told me that Thomas had gotten enough gifts from me for Christmas and that I should stop spending money on him. Never mind that I had told him that Thomas needs an outlet, all he could see was that I was pouring more money into Thomas, a kid he thinks needs to move out YESTERDAY, and he launched into a whole thing about how Thomas is 19 and shouldn't be getting many Christmas presents anymore, that he is getting old enough that he should be buying his own things and that it is our time to use the money for other things.

Let me clarify something for you. When I divorced, it was written in my decree that I should receive a portion of my ex-husband's retirement proportional to the time that I was married to him. The idea being that had we stayed married I would have benefitted from that money and now that we were divorced, I had a legal right to the part that I had earned while we were married. It's a law and my lawyer took advantage of every law there was in writing up a divorce because my ex-husband had cheated on me with my best friend. I didn't think I'd ever see the money once he retired because he lives in another state and I didn't have the money to hire a lawyer and enforce the decree. Miracles do happen though and when he retired, my portion started coming to me in monthly payments. I made a decision then and there that since Thomas had been abandoned by him and since child support had stopped because Thomas had graduated high school, that I would slate that money for his care in whatever way it needed to be used. It has paid for hospital bills, therapy bills, meds, an air conditioner for his room (that his step dad refused to buy using some excuse that wasn't valid) and a new bed (again that his step dad refused to buy him even though Thomas had the same mattress for 14 years). That money also paid for Thomas' Christmas this year. Not one cent came out of "family" money. Not one. The punching bag? Was coming out of that money too. My husband wasn't going to have to pay for a cent of it so I didn't see the problem.

I was wrong though and as I said, he felt I had spent enough and from there the argument turned into how Thomas should be out on his own at this point, that he should be contributing to the family, that he sits around all the time, that he does nothing for himself, that I do everything for him (neither of those last two being the least bit true). I was angry and couldn't believe we were here again. He wants Thomas out of the house yesterday and I don't see where that is possible anytime soon. I explained to him that Thomas had met every one of the goals we had set for him and that he was now gainfully employed (one of the steps towards independence) and that we were working towards the next goal. My husband works 5 days a week, 14 hours a day and misses out on a lot. He doesn't see that Thomas does get up and contribute to the family, he doesn't see that Thomas prepares his own meals most times, he doesn't see most everything that Thomas does but there he was sitting in judgment of him and I and finding every reason to blame everything on willful young adult behavior and not understand that Thomas is home because he's sick and needs protection right now.

It'll be a timeless argument. He will say he wants Thomas out of the house, that he doesn't want another cent spent on him, that Thomas is somehow a burden to him and round and round we will go. I brought up, like I always do, that Thomas is sick, that these are his symptoms which I listed, that a lot of his behaviors we have to look past, that schizophrenia is a lifelong illness and all were shot down using the argument that Thomas needs to "grow up and move on."

There it was then, the punching bag that Thomas so desperately needs became the bomb that set off yet another argument about how HE thinks Thomas should be. I'm so sick of it. I keep Thomas' illness away from him as much as possible, I ask him to do so little as a dad for Thomas (I'd given up trying years ago), and I pay for everything Thomas-related so that he doesn't have to worry about a thing and what do I get? Yet another argument in the kitchen about how HE thinks the world, our family, and most especially Thomas, should be.

Friday, December 06, 2013

Broken Glass And Hard Drives

It's interesting how therapy starts as one thing, with one goal in mind, and somehow turns into a whole other thing. This meeting with Thomas' therapist took a turn once again like it did a couple weeks ago and we ended up in different territory. One thing is for sure, his therapist is concerned about his hours at work and felt it was a good idea that we got them cut back. In that session I learned that Thomas doesn't want to work anything beyond 5 hours at a stretch, this being a bit of a surprise since I thought if they tacked early hours on (like starting at 4 instead of 5) that Thomas would be happy to work them. He isn't in the least. He knows his limits too which made me proud of him because it is those limits he needs to protect himself when it comes to this illness. He doesn't want to quit his job (or lose it altogether) but too much at once or too many days in a row, he agrees, takes it's toll on his sanity.

Where we ended up though was tapping into Thomas' reservoir of anger that he holds inside of him. Who can blame him for being angry after all of the bullying, after losing his biological dad to a nasty divorce when he was 5 and then also a horrible break-up with a girlfriend he loved with all of his heart, to name the biggies in his life? Of course he has anger but what's sad is what he does with it. His therapist likened it to doing some shuffling in his brain where when he feels anger from something pop up, he shoves it away somewhere and replaces it with other thoughts or activities. That's all well and good and I think a lot of us do that but my concern for him isn't necessarily that he does that but rather that he feels like he has a lot of anger crammed down inside and he's scared about what might happen if he were to let it go in the fashion that he wants to.

He told us a story and reminded me about when he broke up with a girlfriend a couple of years ago. He had found out that she was cheating on him. Naturally he was angry, in fact he was in a rage, but what was so difficult about the situation was that I could see he needed to put that anger somewhere and all he felt he had was to pace the living room. Then it struck me. I had computer parts in the garage that needed destroying so I took him outside, handed him a big heavy hammer and told him to pulverize it. Needless to say he reduced a hard drive to little pieces and in doing so he was able to release some of that rage and hurt. That is just what he needed then and said yesterday he needs now.

Often when he's struggling with anger I take him over to the big glass recycling bin and I have him throw glass across the bin to the wall on the other side as hard as he can. I find that even for myself that helps. There's a certain kind of release that can only be found in reducing things to nothing, especially pretty bottles, pickle jars and whatever other glass receptacle we have stored in our recycling bin for such an occasion.

Again, that is good, between hard drives and glass there are places for him to release his anger but his therapist brought up a really good idea. It was one I had before but somehow it had fallen by the wayside. A punching bag. A big, life-sized, heavy punching bag that he can wale on to release his anger. I get it, I've been in rages before with nowhere to let it go and often have taken it out on myself most times but since he's deftly packing it all inside of himself and releasing none of it and is scared about what might happen when he does, I think a punching bag is in order for this house.

So, that is our plan. We are going out shopping today for a formidable foe on which Thomas can get some therapy that he can find no place else in his life. I can see the potential for serious destruction in his life elsewhere if he doesn't find a constructive way to let it all go and like the hammer and hard drive, or the glass bottles at the recycling bin, it is my hope that this punching bag will give him what he needs to get through some pretty tough times.

Thursday, December 05, 2013

Cruising Along

Things with Thomas have been cruising along at a reasonably steady pace. He worked several days in a row and had yesterday off. He was a homebody and was kind of a man without a country so-to-speak because he seemed a bit lost yesterday. Actually, he's been a little bit lost for days. I'm thinking it's because he's so tired from work and I still think that tiredness and the chaotic schedule are taking their toll on him. Yesterday he retreated to his room to take a nap too. This is an almost daily occurrence now and one that concerns me a little bit. For a couple years he has stayed up long past 10pm and didn't need a single nap the next day to recover and now naps are an almost daily necessity. I can't help but keep an eye on him. I don't think anything too big is happening but it's these little things that are making me sit up and take notice.

Another little blip on the radar has been his steadily declining appetite. It's gotten to the point now that when I try to get him to eat something, he often gets mad at me. I don't know what's going on there either but it's starting to bother me. Little things like tiredness, wandering aimlessly around the house, sitting huddled in an easy chair, blankly watching TV, not reacting to comedy shows, loss of appetite, naps, not showering as much, forgetting pills, among other things, I feel add up to something bigger that I just can't seem to put my finger on. I'm worried but I'm trying to stay backed off and just keep an eye on the situation.

Luckily today he has therapy. I've already asked him if it's ok if I sit in and talk with his doctor about his job changes and the other symptoms I'm seeing. He is quite agreeable with that so I'm not going to hesitate to say my peace. I want the doctor to know what's going on so he can either tell me I'm worrying too much or he can make a note of the changes and hopefully do something to help. I'm feeling pretty alone and helpless right now trying to sort out if there is anything to worry about here. I feel like we've got a bit of the domino phenomenon going on here and while only a few pieces have fallen I can see out further into the puzzle and it's going nowhere good as far as I am concerned.

I will put it in the good doctor's hands today and see what he thinks. I would like some answers, hopefully I'll get some today.

Tuesday, December 03, 2013

Job Update

After seeing more concerning changes in Thomas over the last few days I went ahead and made the call over to Thomas' job rehab specialist. She wasn't in at the time so I left a message which ended up being a good thing ultimately.

While I waited to hear back from her she went straight to Thomas and called him. I had asked Thomas if he would be willing to her call her himself but he had said that he was too scared to talk to her but with her calling him, he opened up and told her what was going on with his hours. Then she called me back.

We talked for a short time and I let her know that I was very concerned about the change in schedule and its effect on Thomas and she told me she would call over to his job and do what she could. When she called me back later in the afternoon she was mad and explained to me the experience she had just had with Thomas' manager. Bear in mind that I am open enough to understanding all sides of the situation, including the employer's, so I listened to her tell me about what had happened.

She asked for Thomas' hours to be cut back and the employer basically pushed back. He said that Thomas had been hired to work the 8pm-4am shift originally and Thomas had agreed to that. He said that after changing him from the shift he was hired for to the one he was on after that he was making accommodations for that. He's right, Thomas had agreed to the graveyard shift in his innocence and lack of self awareness but his job rehab had fought for the better hours. His employer then became upset that she was asking him to cut back the existing hours. This is where she began to firmly fight for Thomas, pointing out that they had agreed to keep Thomas at the 5-10pm shift and that they had steadily changed it. She's really stuck between a rock and a hard place because she can't reveal his disability but she did the best she could without revealing too much information. Then, while I was on the phone with her, Thomas got a call from his manager and had been asked to come in early and work a 5-10pm shift instead. It had worked and Thomas was thrilled.

It turns out that schedules come down from the corporate office and that his manager really wasn't supposed to change them. Plus, Thomas had been hired to work holiday hours which meant working late--even to midnight which was their plan eventually. Thomas' job rehab specialist told me in our conversation that she felt that Thomas might lose his job as a result of all of the schedule changes. I understand why that is and if Thomas were to lose his job, he and I both would hate that but he can't work the late hours without suffering. I asked the job rehab specialist what she would do in my situation and she told me that if Thomas were her kid she would be fighting for the same thing and she felt I was doing the right thing. She was extremely concerned for Thomas after having talked to him and her backing up my concerns was validation.

I had a long talk with Thomas afterwards about the potential consequences of this schedule change. I explained to him that he might lose his job and he was ok with that. I told him that I had seen a "disturbance in the force" with him and he agreed that there were things happening to him including increased paranoia and hallucinations, not to mention the tiredness that just didn't seem to leave him even after sleeping 12 hours and taking naps during the day. What I had witnessed happening was true and he confirmed it and as a result I feel better about having made the call. I was pleased with him for standing up for himself when she called him and I am pleased that his schedule for this week has changed from the original 6-11pm to 5-10pm.

He and I are braced for him to lose his job but if he does, I plan to help him get back into the program that got him the job in the first place. Most importantly, Thomas admitted to me that he felt changes going on in him and realized that was the effects from the tiredness and missing doses of pills. He understands that he has this illness and that he must strike a delicate balance between sleep and meds and eating and he now understands what can happen when you don't keep that balance in check. We'll have to see what comes to pass with the job but ultimately, in the end, what we (Thomas, me, our family and the job rehab specialist) want is for Thomas to stay healthy.

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?

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