Saturday, November 29, 2014

Stark Images: What Do You See?

You guys have done it again! You have made me proud, you have made both Thomas and I feel safe, and you have (most importantly) supported Thomas. Thank you so much for your responses to his post yesterday. In all honesty, I didn't know where it would go, especially with the image he wanted to post with his story, and admittedly I was worried about how that image would be understood and accepted. I had great trepidation about letting him post the picture because it was pretty stark and perhaps my hang ups about it were solely mine and I am not proud of that.

In this world with stigma dripping from every mental illness label and in a world where the media portray mental illness with disdain and misunderstanding, I didn't know how my world and Thomas's world would be accepted. Here he is on a blog about schizophrenia and here he is standing in a picture holding a realistic rifle (with the big orange tip--but still) and I believed people's opinions could go many directions about it. The one I most worried about was the opinion of the misinformed, the uneducated, the unenlightened person who would say:

"Lovely, another mentally ill person with a gun. Nice image!"

You know, it could have gone that way. I could have been cleaning up a mess, working to protect Thomas from the cruelties of the world and moderating and deleting ignorant comments about his post and image.

Instead, I happily discovered that my people, the members of my blog, have been listening to me.

You guys have been listening to me!!!

My proudest moment at this point was discovering each and every supportive comment you had for Thomas and along with that I feel like I can say,

"Mission Accomplished!"

I could end this blog today knowing full well that my followers "got it" and have been listening and have been THE MOST AMAZING PEOPLE I have come to know who have found it in their hearts to look past any misconceptions they might have had about this illness and have educated themselves. To me you are better people for having made that effort. I am proud to know each and every one of you and am grateful for your presence here and your unwavering support.

Inside of me, about posting the picture, was a touch of fear. To be honest, I am not a "gun person". This isn't a political statement. This is a personal statement borne of my own life experiences with guns that weren't good. Politically, when it comes to guns, I'm kind of an "every man for himself" kind of woman. I don't want to get into debates about gun control but I do believe something needs to be done about the illegal guns available to everyone and the guns in the wrong hands. No, my fears are mine alone and they colored my opinion of a picture of Thomas holding a BB gun. Not being a gun person, I can tell you that when Thomas bought that BB gun I was scared. I didn't (and still don't) like seeing the thing sitting on his bedroom floor. I hate what it represents (that guns can hurt people) and I worried terribly how Thomas would look to the world as he emerged from my house in full body "armor" holding his realistic looking BB gun and walking out into public view to get into a carload of teenagers and drive away.

It isn't like there haven't been issues about this in my town before. Back when Thomas was in high school the entire area around the high school was in lockdown because of a kid with a gun roaming the neighborhoods and apparently nearing the high school. They LOCKED THE PLACE DOWN and the police presence was strongly felt in my neighborhood. I was TERRIFIED that day. TERRIFIED that this kid was headed for the high school and straight to Thomas's classroom to kill him and all of his friends. I set off on foot through my neighborhood intent on getting to the high school to get my boy and bring him home safely.

In the end, the kid with the gun, was a kid with a BB gun much like Thomas's. He was outside of his house with the gun and someone saw it and called the police and consequently the area and schools were locked down because of it. It was an "innocent' gun but it rocked our community for a few hours. Knowing all of that, I have always feared Thomas leaving the house with his BB gun, feared the uneducated people out there in the world that didn't see the big orange tip on it and who didn't know the innocent nature of it's use.

In the end, as it stands currently, Thomas is free to come and go in our neighborhood with his BB gun and I imagine that the boys, as a group up in the neighborhood that they play Airsoft wars in, are accepted just as my boy is as he leaves our house. For that I am grateful to the community for trusting these youths to stick to the laws and the rules of society. As I have said before, I call these kids "the good kids" and they haven't proved me wrong once.

So, yes, I worried about the image that was portrayed yesterday. But my (now) public figure, my young man, dressed for battle and diagnosed with the most vilified mental illness out there was seen for exactly who I have honestly portrayed him to be and that is a kid who got the raw end of the deal, was diagnosed with a cruel, unfair illness and somehow, by the grace of God, has friends who love him and who want to play Airsoft wars with him on the weekends. Even better than that is that my young man is responsible about his BB gun and even better that THAT he doesn't have to face society's ignorance about his illness.

So today, even though I still hate that BB gun sitting on the floor of his room, I already feel better about society as a whole and most especially my community here on my blog. Thank you for your support of Thomas and thank you for listening to the truth about this illness that I have worked to get across to the public. I'm not doing this alone and that comforts me. I am doing this together with all of you and this morning I am touched deeply by your responses.

Friday, November 28, 2014

Friday's With Tom Part--Hanging Out With My Friends

WRITTEN BY TOM EMERY
 
 
Hey guys this is Tom here and welcome to my blog post.

 
I consider myself lucky that I have friends who accept me and my illness.

 
A few weeks ago one of my friends texted me if I wanted to participate in an airsoft war with other friends. I went and had a lot of fun. My friends and I take the game very seriously. We even dump money into realistic looking airsoft guns and body armour. I have bought an airsoft gun that looks like the British WE Tech L85 bullpup rifle. You can tell by the picture that I also take it seriously. I guess the reason why we take it seriously is because we want to be part of the military without getting killed. A little morbid now that I think about it but we have the utmost respect for our military men and women.

 
But back to the topic of this post, I am lucky to have friends who accept me and my mental illness. I can give an example of when my friends had helped me when I thought I was having a small episode. I was in one of my friend's houses and felt a warm spot in the floor. I asked one of my friends if they could feel it too. They tested to see if they felt it too and they did feel it. They didn't say I was weird or something like that, they were nice and checked for me.

 
Well that's it for this blog post, I hope you enjoyed. I will see you next week.

 
Stay beautiful.

Wednesday, November 26, 2014

Down A Dark Hole

Thomas had therapy yesterday. It's usually on Thursday's but since this Thursday is Thanksgiving I moved the appointment to yesterday. My original intent for doing that was to talk about this "demon" delusion of Thomas's and his "urge to harm". We covered that in the first part, set up safeguards for him and for me when things get really bad and Dr. K. and I tried and succeeded to get Thomas to commit to the new plan. Using a traffic light as a gauge we decided the yellow light meant that he was getting angry and needed to do some relaxation techniques and back away from stressful things and a red light, which was set up for me mostly, was to indicate that Thomas had gone over the edge where relaxation would no longer work but straight up removing himself from the situation was the only answer. I was instructed by Dr. K. to point out the red light times to Thomas and he asked me if I felt comfortable doing it. I don't know why I said I would, though I was hesitant in my answer, because I truly am scared of Thomas in those times, though they are rare. I grew up in a household where red light anger happened a lot and I can't imagine a time when I could have ever said "hey, you're a red light" without some kind of unpleasant consequence. I think that's why I'm not comfortable doing it now with Thomas. I'm afraid of anger. I'm afraid of anger, I'm afraid of it's destruction and I'm afraid for my safety. I learned throughout my life that if I could run the other way from it then by all means, DO IT. Now I'm still not sure I would stay in the situation now with Thomas especially after Dr. K. asked Thomas how he would feel if I told him a he was a red light and Thomas's answer was "I don't know." Good God. NOT what I want to hear when I'm thinking about diffusing a situation. I don't want an "I don't know what I'd do" to turn into my safety being at stake. Needless to say, this red light thing is something I am just going to have to practice in my head enough and remind myself that I'll come through the situation okay if I choose to do it.

Then, in the hours before session I thought a lot about how Thomas did that weird "coming into focus on me" thing that he did on Monday night. I have to say, not in a traditional way, but in some way I can't put words to, it scared me. Having Thomas appear to be able to see into the center of my soul scared me. Please don't misinterpret the use of the word scared because it wasn't like I fear for my life or something. Not in the least. It was just the fact that he went from being completely gone to appearing to be right here, right now, in the moment. So, before therapy I wrote an emergency email to Dr. K. asking him if he thought Thomas might be dissociating. For those of you who don't know about or understand it totally, it is defined as a separation of normally related mental processes, resulting in one group functioning independently from the rest. In it's most extreme form it leads to multiple personality disorder but THAT IS NOT WHAT I'M TALKING ABOUT WITH THOMAS. I DO NOT BELIEVE HE HAS MULTIPLE PERSONALITIES. I am fully aware that the general public thinks that schizophrenia is multiple personality disorder and I don't want to feed that misconception. What I am talking about with Thomas is something called "depersonalization or derealization" which means a state in which one's thoughts and feelings seem unreal or not to belong to oneself. After listening to Thomas talk about what he feels, Dr. K. thought Thomas might be dealing with that.

What precipitated the thought that might be happening to Thomas were my experiences with him lately, especially Monday night but also a couple of other times this month. Then with some gentle questioning Dr. K. and I learned that Thomas (like on Monday night) began to feel like he was in slow motion, like his actions (of putting things on the shelf for example) were slowing down. Then he said he was in a kind of fog. It was that fog that I found Thomas in and it was that fog from which I retrieved him Monday night. With further questioning I learned that he feels, when he's in that foggy, slowed down state of mind, that he feels like he's standing outside of himself watching himself do something and also that he's falling down a dark tunnel. Clearly, and if you know dissociation or have seen it in your loved ones, it is a disconcerting experience as an observer. I asked Thomas if he felt like he was falling down that tunnel, could I talk to him and get him out of it so he could continue to stay at work? He said it wouldn't work and that he'd want to come home.

Here is what is at issue for me with this whole dissociation thing right now. Monday night wasn't the first night that this has happened this month. At his birthday dinner he was kind of out of it and then at one point I looked across the table at him and he was doing that "staring into my soul" thing. I really really wish I could better explain this experience to you. My only word for it is that it is disconcerting.

I have vast experience with the most severe form of dissociation, that being multiple personality disorder (or as it is now known as Dissociative Identity Disorder), because a family member of mine has it and I have had many many experiences of watching this person switch from one "personality" to another and into these derealization, depersonalization states of being. One could say I should be used to it by now but seeing it in my son is a whole different thing. I worry deeply about him and I hate seeing him disappear and be lost to me, not to mention how it feels for me when he returns to me.

I don't want this for Thomas. It appears that it's a function of his intense anxiety. When his mind can no longer handle the anxiety or stress for that matter, he starts to disappear inside of himself to avoid feeling the anxiety. It's a fairly common coping mechanism (think: when you're driving and suddenly you don't realize how you got to the store--that's called highway hypnosis but is also dissociation in a milder form). My biggest concern is that I've seen it happen a lot in the last month and I'm unsure of where it's going. As his mind "learns" that it can do this to escape intense situations then it begins to become an automatic coping mechanism and one that is ultimately maladaptive.

It really makes me wonder if his reported 4 out of 10 level anxiety is really a 4. To find yourself in a dissociative state you have to be under an immense amount of stress. Perhaps his 4 is an 8 and coupled with the stress of working too many days in a row and now having to work tomorrow on pre Black Friday and then again on the actual Black Friday, he may disappear again to a place I'll have a more difficult time of retrieving him from. At this point all I can do is wait and see. He has today off so he can rest but the next 3 days are going to be intense for him. I suggested to him that he should cut back his hours to which he argued that he was fine but when I mentioned it to Dr. K., Dr. K. seemed to agree with me on that and we all agreed that Thomas could work the next few days but if things got worse Dr. K. was going to write a letter to Thomas's manager and ask that his schedule be cut back to just 3 days a week. That was the original plan all along but retail being retail and especially in a big corporation, they lost sight of Thomas and his illness and began working him far more hours than he can handle.

And so we wait and we watch. We'll see what the next few days bring for Thomas.

Tuesday, November 25, 2014

It's All Becoming Too Much For Him

Seriously, I don't know how some of you do it. I am well aware that there are worse places in Thomas's illness that he could be. I see what you guys deal with, what you fight for, the grief you feel and the loss you endure. I see it all and I pray for you every day. I have to say though that I am waging a battle of my own with this illness and Thomas right now and I guess maybe I just don't have the strength that a lot of you have to accept and deal with this illness.

Yesterday Thomas worked. I totally forgot about it and went downstairs to work out for an hour and a half. Near the end of my workout Thomas came downstairs and just stood there watching me. He didn't look well at all. I took off my earbuds and asked him if he was okay and he said that he had to work and was I coming up to make dinner for him. I could have kicked myself for totally blanking on the fact that he worked. I told him I'd be right up and he turned slowly and walked up the stairs.

Once I got upstairs I found Thomas standing in the kitchen white as a sheet. He didn't look well at all. I asked him if he felt okay and he said he felt "a little nauseous" and I figured it was anxiety that was getting him though he reported it was a 3 out of 10. I quickly got his dinner together and he went and sat down in front of the TV. I joined him not long after. Our living room is a long narrow one. I sit at one end of it and the TV is at the other end and Thomas sits to one side and closer to the TV. As he ate his dinner I watched him every now and then and he just wasn't right. He was eating his dinner with no problems so I figured the nausea wasn't bad enough to stop him from eating. I sat there, though, and watched him and hated seeing him looking so beaten down.

When we got in the car to go to work I asked him how he was and he said, "fine, I guess" and I delivered him safely to work. I had a bad feeling about it but I let him go because he seemed willing to go into the store. I came home and put on my fuzzy, comfy lounge clothes and sat down to watch TV. Within 45 minutes my phone rang and it was him. My heart was heavy as I answered the call knowing full well what he was about to ask me. He wanted to come home because he felt sick. I told him I'd be right there and I got my keys and got in the car.

As I drove up to the store I could see him standing in there anxiously looking for my car and when he spotted me he lumbered out to the car and got in. I turned down the radio and looked at him as he rested his head on the headrest and looked BEATEN DOWN. I put my hand on his leg and he grabbed my hand and held it tightly and I asked him what had happened and how he was feeling. He said that he felt sick but that he was starting to feel dizzy too and as I listened to him talk it sounded like his tongue was swollen and he could barely get words out without sounding weird. I asked him to help me out and really think about what had happened leading up to him calling me. I wanted to jump on top of the symptoms before everything disappeared from his memory.

How paranoid was he? (A 2)
Had he been anxious before this started? (Yes)
What was his anxiety about? (Being to work on time)
But kiddo, you were already at work. You had gotten there on time, why were you still anxious about it? (I don't know)
Did you have any unusual thoughts beforehand about shoplifters or people in the store? (No)

So then what was it? Clearly he looked like he'd been through hell. He was white as a sheet, dizzy, and slurring his words. Then I thought, "could it be the clozaril and its well known agranulocytosis? As we drove the rest of the way home I began to panic myself thinking he could be getting seriously ill from his meds. I didn't know.

When we got home I took his blood pressure which I always do when he says he's dizzy and it was fine. I kneeled down beside him and held his head against me and rubbed his head and told him I loved him. I let him go so I could look at his face and he looked at me with this kind of blank look. Then suddenly he seemed to click in and focus and suddenly it felt like he was staring into my soul, his looking at me was so intense. It was almost as if he was begging me for something and I couldn't figure out what. I realized he was TERRIFIED of something and I asked him,

"Are you scared right now? Are you worried about how you're feeling?"

He said yes and I told him to just sit there with me and I'd keep an eye on him and if he got worse I would take him to the hospital. He said okay and reached for my hand and I kneeled beside him and held it. I wanted to cry. I wanted to unleash all of everything I have been feeling for the past couple of weeks. I wanted him to be okay and I wanted this illness to go away.

As the evening wore on he slowly got better and by bedtime he was fine, I guess. Still looking beaten down but sounding better, I said goodnight, told him to come get me in the middle of the night if he needed me and I went to bed.

It's here again. The mysterious nausea, the anxiety, the calls from work to come home early, it's all back just EXACTLY like last year at the beginning of his serious downward spiral. What happened last night was a big indicator that his illness has taken a serious turn for the worse. Being unable to stay at work after months of working like a pro shows me that he's in a very bad place. I don't know what to do.

I am lost.

This morning I am beaten down myself and breathing shallow and worried like crazy.

Here's the thing though. He worked last Friday, Saturday, Sunday, came home early yesterday and now he works Thursday (Thanksgiving) from 6-10pm for the big sale then again on Friday from 5-10 (on Black Friday--the busiest time of the year) and then again on Saturday. I just don't know how he's going to do it. I don't think he has a chance at making it through Thursday or Friday. I think it's all becoming too much for him.

I find myself at the point of going in to the store to once again speak with the manager about Thomas's hours and explain yet again about his illness and what needs to happen for him to be a productive worker. It's been almost a year since I was in there having a talk with them and I really hate to interfere but I hate, even more, that my boy is suffering.

So, it's here, it's back, the mysterious need to leave work with no discernable reason for why he feels the way he does but he needs to come home NOW. It's time to stop my denial about what's happening with him and it's time to take action. I don't know exactly what I'm supposed to do but something has to be done.

I. Just. Can't. Lose. Him. Again.

Monday, November 24, 2014

"You Won This Round (Again)"

I sit here yet again rubbing my forehead with my hand, shaking my head and sighing a defeated sigh as I think about beginning to write about this. Ever since Thomas's post on Friday I have been struggling with this. I told you that he had written something in his post that I didn't know about him. Side by side with you I learned some things about Thomas that I didn't know and I considered it a privilege of sorts to be able to take this journey with you instead of on my own, discovering how Thomas copes with his illness. It turns out, however, that what he had to say ran much deeper than the surface things that he wrote. As I drove him to work Friday night I managed to unwittingly zero in on something that broke my heart.

If you remember, he wrote about how he manages to talk himself out of worrying about being watched when he's at work. He then went on to say that he does feel like he thinks he sees people shoplifting and that he thinks they "look shady". I don't know about you but I took this at face value. In the past he had told me how he would find open packaging and as part of his job he was to take that straight to a manager and let them know. He had experience with dealing with shoplifters in that way so thinking that he sees someone shoplifting, while new information for me, was still something that I considered "normal" for the type of job he does.

It took a sad turn though when I started talking with him about it on the way to work.

"What are you supposed to do when you see a shoplifter?"

"I'm supposed to call a phone number and report it."

"Why aren't you just supposed to go report it to a manager?"

"Because we're supposed to call a phone number."

"Well, that's weird. How do they expect to catch a shoplifter if you're busy on the phone to some unknown place expecting them to solve the problem?"

"I don't know. We're supposed to call the phone number. Maybe we are supposed to tell a manager though, I don't know."

I just thought the whole thing was weird but he was adamant that calling the phone number was integral to catching a shoplifter. Needless to say, he had let a few shoplifters go probably, I thought, because of his anxiety about calling people in general. I didn't really know. So I went on talking to him about it and then it became clear.

"Why don't you call the phone number?"

"I don't know. I guess I think it's because they won't believe me. I see a lot of people I think are shoplifters."

Then it dawned on me and I asked the question that would reveal the truth.

"Do you not report it because perhaps your paranoia is playing a part in what you think you are seeing? Are you afraid you're going to get in trouble if you call too often and it turns out you were just paranoid about a person because they didn't look right to you?"

He looked down at his phone in his hands and quietly said,

"Yes."

There it was. The truth. I thought what I read in his post on Friday was the truth. I thought he was doing spectacularly well at work managing to distract himself from feeling like he is being watched. Instead his paranoia had only shifted to something new. Now HE was doing the watching and making judgment calls on people and all of it was filled with that hateful parasitic paranoia. Dang it.

No.

I know I've said it a thousand times, perhaps even more than that, but I hate this illness. I hate it. I hate that something that's supposed to be so good is marred by something to do with this illness. Thomas's post on Friday made me so happy. It was like reading the best book you have ever read. You loved the story line, you fell in love with the characters and you thought the author had nailed the whole thing. Alas, no, the story was not what it seemed and instead of enjoying everything you had just read you are now finding out, like one of those hidden object pictures, that contained within it all was a monster lurking on the edges.

That dang paranoia. Will we ever be rid of it? I have to admit that I did wonder what schizophrenia would bring us next. Before the Fall season started and the symptoms set back in, I was so happy he was doing so well but a part of me felt dread because I knew he wasn't cured even though he had gotten rid of a lot of his old delusions and paranoia's. All I could wonder was,

"Okay schizophrenia, you turned him loose now free from a few delusions and such but what are you going to put in its place? I have a feeling you aren't going to leave those empty holes empty for long. I just know you're going to concoct something new to fill those holes instead of just leaving my boy alone. Hmmmm...what will it be?"

And I pondered that and knew it could be anything.

ANYTHING.


 So, to schizophrenia I say, "Kudos, you won this round (again). Dr. K., Dr. N. and I had gotten rid of something and you managed to leave us all in the dust and leave behind something new to be worked on. Gee. Thanks a lot."

Now here we all are. Standing here covered in dust, Thomas covered the most, wiping dirt from his eyes, trying to get his bearings and keep on his feet.

I so wanted to win this round. I so wanted to be victorious and be able to write about it here and say, "We did it!" but here I am, sitting in the early morning hours rubbing my forehead and shaking my head and sighing a defeated sigh.

Sunday, November 23, 2014

A Prayer For The Struggling

I write today about a woman I met yesterday whose teenage son is descending rapidly into this illness. Like all of you have at one point or another, she is watching her son, who used to be so lit up in many ways, intelligent, wise beyond his years, happy and engaged in life, disappear into what seems to me to be disorganized schizophrenia. This type of schizophrenia I have not been personally touched by on this blog, that I can remember, and now being brought into this mom's world and the pain she feels reminds me of watching my own teenage Thomas descend into this illness in a different, yet somewhat, same way.

I'm taking this Sunday to write about it because it's a day, for many, of faith and I believe that this woman deserves all of our prayers, from those of you who pray for the health and safety of all of those who suffer from this illness and their loved ones who helplessly stand by and watch their loved one disappear. This illness is one of the cruelest kinds as far as I am concerned because "madness" is so unfair. To begin with, there is no cure, we are left to grieve and finally accept that our loved ones will have this illness for their entire lives. Beyond that we are set in overdrive and finally into speeding cruise control trying to find the right doctors, the right therapies and God help every last one of us (for we all know this part of the journey is difficult) the right meds. We pray constantly, we cry alone at night, we worry beyond imagining and our moments of celebration are fleeting most times as we see our loved ones return to us only to find them robbed again by another phase of this illness.

This woman that I met is walking a very painful path right now because of the type of schizophrenia her son seems to be manifesting. He has lost tested for intelligence points since he got sick, he has slowed down academically, and he is losing his ability to speak coherently often using another word, one that he didn't mean to use, like "spoon", to describe what he's doing. Even more painful is that he knows that this is happening and he can't control it. To me, that is a special kind of pain. The awareness that you are changing and you can't control a single second of it is the worst kind of awareness because you can remember back to a time when things came so easy for you. He is struggling as he descends into psychosis and his mom is hanging onto him for dear life looking for answers from above, from doctors who aren't particularly cooperative, and from inside herself wondering what it is SHE can do as his mom to make him okay again.

We've all been there. We are all there right now on some level. Our loved ones are shuffled on the board game of life from one colored square to another choosing cards for directions having no idea what they might tell us to do next. Oftentimes we're sent back to places we've already been or we're cast forward into the unknown watching other pieces, other people, pass by us and our loved ones into greener pastures, brighter cities, riches beyond belief and finally resolution and rest. Caught on this macabre board game we struggle each day to find solace in even the smallest things, hope in the darkest hour and strength to carry on to the next thing that gets thrown our direction. We are all there on this board game of life, "version schizophrenia".

So, today, I ask for prayers (or blessings or positive energy or whatever your faith has to offer) for this woman and her son. The road ahead is hard. He is young, just 16, and for those of us in the trenches having 20 year old, 27 year old, 40 year old, and 70 year old loved ones with this illness what we can offer is vast experiences, proof that there is sunshine after the rain and hope--because hope has never once failed us even though we refused, at times, to see it there waiting for us.

To the woman I met yesterday, I am here for you, we are all here for you and we are hoping for the very best outcome for your situation. When I woke today my first thought was of you and your son and I said a prayer of healing for him and peace for you. Your journey is long, the road ahead is rough, but there is hope, always hope. Hang onto that and hang onto your son. I, for one, believe that your love for him, your hugs, your everything you can offer him, will help him through this.

Saturday, November 22, 2014

An Amazing Gift For Thomas and Myself

I've been thinking a lot over the last 12 or so hours about whether or not to share what I'm about to share. I decided that I had to because what happened showed a beautiful side of Dr. K. and what he did made all of the difference in the world to me but mostly to Thomas.

Yesterday I emailed Dr. K. and I told him that I write this blog. Quite honestly I thought he had found it long ago and had been following it here and there. I found out that wasn't the case at all. My email, though, contained a link to my website where Thomas's post from yesterday is at. I told Dr. K. that Thomas had been looking for purpose and I had given him options of things to do to help me out with all of my different projects related to schizophrenia. I told him that Thomas had chosen, of his own free will, to begin to write a guest post every Friday for my blog. I explained how Thomas had given me his blessing long ago to write this blog and also that Thomas had come out of his shell writing for and responding to all of you, my followers and now Thomas's too. I didn't know what to expect from sending that email because I know Dr. K. has a vested interest in Thomas's mental health but what came back to me was a response that was better than anything I could have imagined.

He actually went and read Thomas's post and returned to his email to write this for Thomas:

"What a great idea my hat goes off to you and please pat Tom on the back for me for all those people he is helping understand his condition and others with similar difficulties. Let them know that he should be very proud of himself and that I am."

That's simply beautiful, right? I mean, for a therapist to say such wonderful things about Thomas and about my project is pretty cool. I know that it meant the world to me and Thomas was equally proud to have received such a wonderful message from the man he looks up to and relies on for help to get through his illness.

Then, it got better. Not long after the email I got a message that my website had received a comment on Thomas's post and I was excited to go see what "anonymous" had to say about it. I am loving everyone's responses to Thomas because I know they are doing him a world of good to have the feedback that all of you have left for him.

(As a side note, he is replying to your questions so be sure to go back to the post and see if your comment was replied to. Remember that he 'likes' each one as he reads them and every one of them makes him smile and makes him want to help. Thank you for what you're doing for him.)

So, here was "anonymous'" feedback:

"Tom,
I appreciate your honesty, bravery, courage and willingness to help others along their journey and struggles. My hat goes off to you and you are an inspiration to others who as well are struggling but you are helping them find hope along the way. Wonderful column, hopefully you'll keep it up-Kevin K"

THAT was Thomas's therapist. THAT was Dr. K. taking the time to publicly write such a lovely response to Thomas's post encouraging him and thanking him for his gift to others.

THAT was simply BEAUTIFUL. It also, to me, was unprecedented. For a therapist to reach out in such a manner, to me, is a rare occurrence. I'm not sure how common it is out there in the world but in my experience it never happens.

So you see, this man cares. He cares a lot. For as much as I sometimes write about how I feel about how he's handled things in therapy, I still feel like he's doing a phenomenal job and merely learns, just as I do, along the way, about Thomas and what makes him tick. He's not going to be perfect, but who is? And still you can count on me in the future to voice my opinions about what happens in Thomas's therapy because in some ways, well really in a lot of ways, I know Thomas better since I spend my entire life with him and I am a mom who protects her son from anything that isn't the thing that I feel is right for him. In the end though, what matters where Dr. K. is concerned, he absolutely had the BEST of intentions with his treatment choices for Thomas and I respect and like the guy for all that he has done for Thomas for the 7 years that he has been with us on our journey.

Now, to his critics (one of two of you the other day) who said he handled the session about Thomas's demon delusion and his violent thoughts attached to it, poorly, let me say this. Our session this last Thursday went better. All of the things that had not been covered the first time were covered this time. He made clear to Thomas the ramifications of his behavior were he to act on these (now called) "urges to harm". He brought up that if he hurts someone he could end up in jail saving me from having that difficult talk with Thomas myself. He also made Thomas aware that his ANGRY,SCARY LOOK that he gives me makes me feel threatened and that kind of thing JUST CAN'T HAPPEN. He handled everything on this subject matter beautifully and topped it with asking Thomas if it was okay for me to join his therapy for a little while to work through this. Dr. K. has my safety in mind and he is protecting me as well as others. There is nothing more admirable than that as far as I am concerned. Ensuring the safety of those in danger is integral to Thomas's therapeutic process. In the end I couldn't have asked for a better session for both Thomas and I.

Afterwards, and most heartbreaking of all, as we walked across the parking lot, Thomas and I, he said to me:

"Mom I'm sorry that I scare you."

Oh...ouch...my heart...my being...

That it has come to a point that my sweet boy has to apologize to me for scaring me is a sad thing, a good thing too, but a sad thing. This is a young man who loves early summer when the doves are nesting in our yard and he stands below their nests staring up at them lovingly. He has a beautiful heart, he doesn't hurt a fly (well, a spider is a different story altogether LOL) and IF he were to act out in anger, at least in my house he will receive the benefit of the doubt and will be placed in the hospital but will be loved beyond measure. Perhaps that will never happen, perhaps therapy will rid Thomas of this demon delusion and my safety and the safety of others will never be called into question.

The thing about all of this, everything that I have written today, Thomas, and me by extension, are in good hands with Dr. K. He cares about my boy and in the end, no matter the flaws that come to light about him, what matters most is that he cares and he has the absolute best of intentions.

Friday, November 21, 2014

Friday's With Tom--How I Cope With My Symptoms



Hey guys and gals, Tom here and welcome to Fridays with Tom.

Today I will be discussing how I cope with my symptoms.

It's really hard to explain how I cope with my symptoms. I usually just ignore the symptoms but that probably won't help most of you or your loved ones. I guess one way I cope with my symptoms is distraction. I spend most of my days sitting in front of a computer playing video games and watching videos so my mind is often focused on other stuff.

When I'm at work I'm usually busy with my job so my thoughts aren't busy thinking “is someone watching me?” There are times at work however that I think some customers are shoplifting. Some people look shady when they leave the establishment.

When I'm out in public there are times when I think that the government is sitting in a vehicle watching me or someone is following me while I'm walking in a store or walking the dog. To cope with that I usually think to myself, “They aren't watching me, I have nothing to hide nor do I have a reason for the government to be watching me.”

For as long as I can remember I've had what my therapist and I call “running commentary.” By that I mean a little voice in my head that talked about what I was doing. For example, I could be sitting down eating dinner and the running commentary voice would say, “you are chewing your food.” My anti-psychotics have helped silence the running commentary so I rarely hear from it again.

Well that's all I've got for today guys and gals. Have a great day! Oh and included above is a picture of the newest Gundam model I built for you guys, the Tieren Ground Type.

Here is a link to the wiki about it:

http://gundam.wikia.com/wiki/MSJ-06II-A_Tieren_Ground_Type

and remember; stay beautiful.

WRITTEN BY TOM EMERY

Today's Upcoming Event and Other News

I wanted to remind you guys that today is "Friday's With Tom".

Tom.

It cracks me up in a way because here I am calling him Thomas and he writes his stories calling himself Tom. I'm sure there are a lot of you mom's and dad's out there who call their kid by their given name yet their kid calls themselves something else. I always wonder if I should start calling him Tom but he tells me he's fine with Thomas. To me, he isn't a "Tom", he's "my Thomas".

I'm not sure if I've ever told this story about his given name so I thought I'd share it here real quickly. I named him his full name, Thomas J (yes, just a "J") after the little boy in the movie "My Girl" about a young boy and girl who become friends. Thomas J is the boy in the movie who takes care of his little girl friend because she has so much anxiety about her life. He is sweet, loving and kind. He is the boy that I wanted my baby boy to turn out to be. As such I named Thomas, Thomas J, and the really cool thing is that he turned out to be the sweetest kid I know.

As an added interesting fact, the OB-GYN that delivered him was named Thomas J. Tomzak, though his "J" stood for something. I remember they took Thomas from my body and told me he was a boy and asked me his name and in my foggy, drugged mind I quietly said, "Thomas J" and I remember just before I went out cold the doctor said,

"Oh! So you're naming him after me!"

Which was followed by a chuckle. I think I laughed too but I soon lost consciousness so I can't be sure.

Needless to say, my boy, to me, is Thomas but to a grown young man who's out in the world as an adult, he calls himself Tom. He deserves an identity different than what his mom wants and dreamed for him as a baby but whether he is "Thomas" or "Tom" he is the same kid. Loving, sweet, kind, polite, caring about others, generally selfless, creative and of course handsome.

Okay, enough from me. I will post his contribution at 9 a.m. PST and I think you guys are really going to like it. He opened up to you about things he hasn't even told me so in reading it I, too, learned something about him I didn't know. His presence here and his value, both to all of you and to me too, will be a wonderful addition to this blog. I hope you're looking forward to it. I, for one, am VERY excited.

Thursday, November 20, 2014

We Must Thank Stacy

Stacy is a tall, young, African American young man who must have been sent from God to manage the store Thomas works in. He is truly a wonderful young man and I hope to someday go into the store and thank him for the kindness he has shown my son. You see, Thomas still has depression about going to work, before work even starts, and on the nights that Stacy works, all of that disappears never to be found again, at least until the next time he works. Last night illustrated that more than it ever has.

Thomas worked at 5 and the day seemed like an average, every day. Until about 2 p.m. rolled around and Thomas came out of his room and seemed to be loitering in the kitchen. I was trying to take a nap in the living room but I was curious what he was doing in there. I am very worried that his penchant for sugary food is becoming something to be worried about. It's all he eats if left to his own devices. So, I listened to what he might be getting into. When he came into the living room and saw that I was awake he told me that he had just taken a lorazepam. He was anxious about work.

This poor kid. I wish I had magic powers so I could take away the unreasonable, unfair anxiety that he has about being late for work. It has zero basis in reality. He has never ever been late to work, I have never failed to make sure he gets there on time since I am the driver and I am always sure his dinner is ready for him so he has plenty of time to eat it. None of that works though. So yesterday, like I do every time he's anxious, I gave him a big hug and I reminded him that I have never failed him, that I have always done what he needed me to do to get him to work on time, including getting in the car with plenty of time to make the lights and deliver him safely for work. Like most nights, he was unconvinced.

I wish he trusted me more with this.

I got him to work with plenty of time before he had to clock in and I drove home half expecting to get a call an hour into his shift asking to come home early.

The call never came.

Instead, at 9:48pm I left my house to go and pick him up. I waited in the lot and watched inside the store hoping to get a glance at Stacy to see if he had been there tonight. Then, there he was, my knight in shining armor of a different kind. My son's savior from the stressors at work. He left the store with Thomas and they walked out to their cars. As Thomas got in the car I could feel the light emanating from him. Before I could even ask, he said to me,

"I had a good night tonight. Stacy was there."

Ah Stacy. The best manager in the world. The ONLY manager that has ever complimented Thomas on his work, told him he was doing a good job. He's consistent with his praise and he makes life at work, for Thomas, bearable. I already love him to death.

So all of the kitchen loitering trying to dispense a lorazepam for himself, all of the anxiety about being on time to work. all of the empty (to him) hugs from me, all of it was gone and sitting next to me in the car last night was your average young man, having just worked a 5 hour shift and sharing stories about his night including the snack he ate, a giant SUGAR cookie decorated like Santa.

This sugar overload he's consuming now worries me. I'll check with the doctor about that. In the meantime, I am so happy because my son is happy right now about work.

Wednesday, November 19, 2014

The Conversation With Thomas

Thank you so much everyone for your responses to my post yesterday. You gave me a lot to think about. I have to say that I am....apprehensive...maybe not scared...but apprehensive around Thomas now and will be from now on. He woke up in a mood and gave me THE LOOK that I now will call his warning look which includes a snap of the head to look at me and angry eyes and no words about what I do that upsets him. I don't like those looks. I never have. Now, however, they take on a much bigger meaning now that I know what I know about his potentially violent side.

I took a walk with him with the intent of questioning him a little bit about this but it took half the walk for me to get the courage to even start the conversation. Half afraid of the answer and half afraid of angering him, I just couldn't begin. Finally I began with telling him that I wanted to talk to him about this belief that he has a demon inside of him (I use the term belief because I am not going to back this delusion and "belief" means it's on him and him alone). I felt him go on guard. I started by asking him about what he had said about hurting me. Has he felt like hurting me lately? (No) What is it that I have done that has caused him to feel like hurting me? (I don't know) What stops you from going through with hurting me? (It's like I said in Dr. K.'s office, pure self control) Do you think there's a chance that you wouldn't be able to keep that self control? (Maybe) Do you hear a voice telling you to hurt me or someone? (No) Do you have any thoughts at all before you feel like you're about to hurt someone? (No) Do you feel like that demon is stronger inside of you when you have those thoughts? (Yes) Do you understand that I am all you have in this world to care for you and that you can't be hurting me? (Yes) Do you know that I love you very much and don't believe I should be a victim of violence from you? (Yes)

So, okay, you guys can take away from that conversation what you want. But here is my takeaway. Yes, he hasn't felt like hurting me lately.

That is good.

Yes, he is talking to me about all of this.

That is good.

Here is what concerns me though. It's the I don't knows and maybes that concern me and also the fact that there is zero thought in his head before the impulse to hurt me or someone. That "zero thought" is scary because to me that shows just how impulsive his actions would be. A lot of damage can be done on impulse.

I think about how he decided one night at work that he hated his job and he was going to quit right on the spot. Just like that. Granted he didn't end up quitting but the desire to make this choice purely on impulse literally drove him insane and he became physically ill and off the charts anxious. In that instance his self control was in place but the desire to quit was so strong that he made himself sick. This is what I worry about. At some point, a person cannot take that kind of stress on themselves and their mind and they snap. In a totally different way I have had that experience myself under stress. Overwrought with incoming stressors I fought like crazy to keep control and finally I just couldn't take it anymore and I got very angry, ranting at my husband and crying and just generally losing my mind. I never wanted to hurt anyone but my illustration here is that of a person who is under so much pressure and finally snaps.

There is much to celebrate about these last couple days with Thomas. The fact that he's talking is amazing and the fact that he currently doesn't feel like hurting me is good. That's where we all celebrate. But the larger problem, and not worthy of a celebration, is the impulsive nature of this delusion and it is a HUGE reason to be concerned and I need to be vigilant with him and adjust my dealings with him, keeping arguments to a minimum etc.

I am forever changed. My love for my boy hasn't changed. My desire to be his caregiver hasn't changed. What has changed is that I now understand that there is a particularly nasty delusion in control right now and I'm scared. I am unable to come up with a way to work with this particular delusion because apart from the tiger eye, I am out of ideas. I don't want to fuel the delusion but I have no idea how to discuss it with him without, in some way, acknowledging it's existence. I am a bit lost right now.

Tuesday, November 18, 2014

The Time Bomb

There's been something going on that I'm not talking about. Something I think a lot of us deal with but for me it's kind of new. It turns out that Thomas's newest delusion makes him want to hurt people. Obviously this isn't good and I'm kind of lost as to what to do next. First, here's how the conversation about this went down.

He was asked, about his delusion,

"Do you ever want to hurt anyone?"

"Yes."

"There are 3 kinds of hurting someone. You can hurt yourself, others or objects."

Before the word "objects" was out of Dr. K.'s mouth Thomas immediately jumped on "others". Just like that. No hesitation. Both the good doctor and I stopped a second then went on with talking about it. Then, taking that thought, I ran with it when we got in the car and I asked Thomas if he ever felt like hurting me. Not a moment of hesitation went by and he matter-of-factly said, "Yes."

Terrific.

I took the news like a pro, with a measure of indifference, and I immediately told him,

"Well, I love you no matter what."

What else could I say?

Then I kind of sat on that development and finally emailed Dr. K. a short two sentence email telling him about what Thomas had said about hurting me and this morning I got an answer. Bear in mind, Dr. K. never asks me in emails how I feel about things, how I'm doing. Never, that I can remember. His email, however, was just a two sentence email asking me "are you doing okay with his answer?" Then he stated that it took courage for Thomas to tell me that.

Here's the thing about the courage part of this. Just like when he was asked about hurting himself, others or objects, he didn't miss a beat before answering. It was impulsive. And when I asked him about hurting me he answered just as quickly. Courage, I believe, played no part in it. I don't think he stopped for even a moment to consider how this might affect me. I don't think he did anything but answer a question honestly. Which is okay, to me, in a way, because I think those impulsive answers contain the most truth because they are the first thing he thinks and the first thing out of his mouth.

The thing is, when he said what he said in therapy both the doc and I took his answers with a level of acceptance which might have been a mistake, I don't know. If he thinks we accept this part of him I wonder if he thinks it's okay to feel like this.

Is it okay?

Then, as for Dr. K.'s question to me, "am I doing okay with his answer", I would say, honestly, no, I'm kind of not doing okay. I think I am forever changed. I think I'm looking back on times when Thomas and I weren't getting along and he gave me THIS LOOK that scared me and made me stop for a second and decide if it was worth my safety to pursue the argument. Not once have I continued the argument. Not once.

And I never will again.

Ever.

So, had Dr. K. not asked me if I was doing okay with the answer I think I might have tried to write this off like I do a lot of things about this illness. I think it's self-preservation to some degree to deny some of the aspects of this illness. But now that he asked, now that it appears to me that I have reason to be concerned, I am concerned and I am definitely not okay with the answer.

As for what to do with the answer? I don't know exactly. I'm at a loss. This new delusion scared me to begin with and now that he has said he feels like hurting others it adds a whole new level to it. I mean, someone has handed you a ticking time bomb, what do you do with it? I, personally, know nothing about diffusing this particular bomb and so here I sit, stock still, trying to figure out what to do as the seconds tick by.

Monday, November 17, 2014

The Fog On The Valley Floor

I noticed something yesterday about myself that I'm not thrilled is happening. The overwhelming wave of a special kind of panic is washing over me. Now, this is not panic in the sense of a panic attack which lasts a short time and can be helped with relaxation and breathing. No, this panic is the constant tightening of the chest, brain-swirling thoughts about what to do and how to handle it and a need to fix it NOW. What I'm dealing with is what I deal with about this time of year, every year now for 3 years. Granted it comes at other times of the year but I feel it most acutely now because I have my own bipolar symptoms to deal with and all of it gets mixed together. My panic is about Thomas's worsening symptoms and I feel like he's slipping away from me in a slow, painful fashion--painful for both he and I.

Saturday night at our house is called "Fat Saturday." This is the night in the week that we throw all concern about our diets out the window and we go and get fast food. The trips to get dinner are usually done by Dan and I and we use that time of togetherness to talk about our day. However, this time Thomas asked if he could go with us. He NEVER goes with us. It felt weird to me that he wanted to go but the dawning realization that he didn't WANT to go but rather NEEDED to go took me over. Whenever his behavior changes like this I know something's not right.

We all rode together in silence, lost in our own minds, and while I'm not sure what everyone else was thinking, I was asking myself,

"Why is Thomas with us tonight? What's wrong?"

Then with those questions, that familiar panic washed over and I looked back at Thomas and said,

"I love you kiddo!"

It's all I had to offer him in those few minutes of driving to the pizza place. Really, it's all I had to offer myself, a moment of comfort to waylay the panic. I love him I love him I love him. Please God let my love be enough.

When we stopped and Dan got out I turned to Thomas. I asked him,

"How are you doing kiddo?"

He looked at me with no expression and said he was fine.

No...he wasn't. Then I recalled his last therapy session and I remembered that he reported that his paranoia was increasing. It's a 3 now, out of 10. I said to him,

"I didn't know your paranoia was growing. (He nodded) I'm so sorry that you have to deal with that fear kiddo."

There it was, the sorry out of me that won't change a thing though I wish it was the band aid that could cover the wound of paranoia. Then I asked,

"What is it your paranoid about?" thinking it might have something to do with this whole negative/demon thing he feels inside of him. He hesitated and then I asked,

"Is it the government stuff again?" (Yes) Do you feel like they are watching you again?" (Yes)

Dang it! It's back. I thought we got rid of it. I thought the therapy and the doubled up antipsychotics and a few months break had annihilated it for good.

No.

It's back.

So, we rode home again in silence and I felt that weight on my chest and swirling brain and I wanted to come up with the answer that could take it all away from him.

All of it.

The paranoia.

The demon thing he believes is inside of him.

The fear.

The meds.

All of it. Every last piece so that he could be whole again. So that there were no hospital records stating in black and white and may as well have been written in real stone, that he has acute paranoid schizophrenia. All of the talks with the doctors about how he has a lifelong illness and will decline as he goes into his twenties. The conversation with his first PNP that he is treatment resistant and that our lives were always going to be a roller coaster of medication trials and switches.

I want to take it all away.

But I can't

And so that panic sets in slowly like a fog in a valley high up in the mountains. From above it I see it's white blanket obliterating my view of the valley floor but underneath it, Thomas and I wander, out of the sun's warmth, surrounded by monsters called "paranoia" and "anxiety" and, you name it.

All I want is that panic to go away. I want Dr. K. to come up with the magic bullet therapy technique that is going to change Thomas's mind. I want Dr. N. to find and settle on the right meds that will make this all stop once and for all. I want to be able, myself, to take it all away by loving it away.

None of them are working right now and so I turn to hope. There is always a light at the end of a tunnel, they can't go on forever. So I grab hold of hope again with one hand and hang on for dear life, my other hand holding Thomas's.

Saturday, November 15, 2014

From Darkness To Light

What a week it has been for the Jimenez/Emery household. We went from highs to lows then back again. The great thing is, I can credit all of you with all of our highs. I have got to say something. I am deeply honored that you have responded to Thomas in the way that you have first with posting last week, questions for him to answer if he were to start a blog here and then supporting him this week through his latest delusion with some of you going to far as to tenaciously defend Thomas and chastise me for my use of some buzz words that upset you. It is those of you that did that that made me rethink how I'm talking about this new delusion of Thomas's and while I will talk about it in the future I will try to be more clear on my feelings and only use one of the buzz words that has repeatedly come from Thomas alone. I think it's important that you understand the use of the word where Thomas is concerned but I can tell you after reading your posts and consulting with some close friends in a support group and also losing a blogging position at Healthy Place, most likely because I wrote about Thomas's delusion in the way that I was doing so on this page, and I think I offended them or at the very least lost their respect. I can see that with my position as writer and admin here on Understanding Schizophrenia, I need to use that position more mindfully than I have been. Expressing my confusion without thinking through, at least a little bit, how I might come across is definitely something I have to work on. My audience is large now (4,989 likes and counting--almost 5,000!!!) and diverse and I need to keep that diversity in mind as I write, at least on the subject matter that I have been writing about for about 2 weeks.

As for your responses to Thomas, I am very excited for him because what I get that you don't is the benefit of seeing him read your comments, gain confidence and even respond to some of you with the heart of gold he has that I know well and love. Ever since his post published I would catch him loitering by my computer and being quiet and I learned that was the cue to fire it up so that he could read your comments. He's already talking about what he might write about next week and I'm encouraging him to talk about his mental health in that post so that there is a window opened into his world where his illness is concerned. I can see by the comments that many of you are depending on his point of view to help you better understand your own loved ones. I know Thomas offered up some advice in the comments section to someone asking how he handles his anxiety because their own loved one is struggling so deeply with their own anxiety. Thomas's answer was sweet and by no means was the holy grail in how to beat anxiety but he wrote his heart and offered what he could. He's an amazing kid, which I knew already, but to see him come out of his shell for an audience of almost 5,000 was something I never thought would happen. I am excited and will do my level best to keep him here and writing because I think his experiences will enable him to offer up a perspective that many of you desperately need from him.

Finally, Thomas's session on Thursday was enlightening though the enlightenment came with a price, the discovery of a darkness much deeper than I thought. Thomas has lived with a core delusion for as long as he can remember and it has cast a shadow over how he lives his life and views himself. Unfortunately this delusion owns a piece of Thomas's essence meaning that he runs his life around this delusion making changes to accommodate it and feeling damaged in the process. The feelings that manifest off of it are anger and the physical feeling of pressure pushing outward from inside of him inside his chest causing him to use (his words) "pure self control" to contain. If ever there was an example of the strength of my boy it is in how he has coped with this delusion throughout his life. There is a lot of work to be done to change this delusion and I think it's going to take a long time. He is adamant about its existence, he is confident in its "ability" to control his behavior and strong in the belief that it has the power to cause him to do a great deal of damage. The beauty in all of this was when Dr. K. asked him how he would feel if that feeling were gone and before Dr. K. could get the whole question out, Thomas jumped on it and said he would be very happy to be rid of it. After years of him wanting desperately to hang onto his delusions for various reasons, the fact that he wants to be rid of this one is a good sign. Hopefully his motivation and resolve stay strong and he can get past this quickly.

Thank you again for all of the love you are showing Thomas. I am very proud of you, my followers, and I feel good about allowing Thomas to open his life to you all. I wait, as do you, for what he writes next.

Friday, November 14, 2014

Thomas's First Post--"Friday's With Tom"



Hey you lovely people it is I, Tom Emery and today is my first blog post here on this blog/website I would like to introduce myself. Well for starters, you know my name, Tom Emery. I sit here watching videos thinking of what to write next. I guess I could talk about what I do for entertainment. I watch a LOT of YouTube videos. Mostly video game reviews, playthroughs and commentary. The best YouTube channels I watch are primarily Minecraft based. For those who have kids who play Minecraft, you know what it is. If not I'll tell you, it was a game created in Sweden (I believe) that became really popular around 2011 with their “Official” release (even though the game was public and for purchase since early 2009 [I believe]). What you do in Minecraft is simply survive the nights when monsters spawn (appear for those not game savvy) and defeat the Ender Dragon. Literally, a dragon. Its pretty easy to do if you know what you're doing. “What is Ender?” you might be asking? Well it was the creator's play on words of “Slender” because he based a character off the infamous “Slender Man.” Some of you may recall that I had a fear of Slender Man but I'm sure my mother told you that story already so I won't go into detail about it. But there is more to Minecraft than just surviving the nights and killing dragons. A LOT of people use it to build large structures and environments. For those who play Minecraft know a few people on the web who create large structures such as cathedrals, landmarks, puzzle games, and adventure maps. Its a really fun game and if you are really creative and/or you want a position in architecture, Minecraft will help you with buildings (even though there isn't gravity/physics so don't build a structure that doesn't have any real support however there are mods for that). Back to the YouTube part, Here are some channels that you could check-out:

 

BdoubleO100-

VintageBeef-

Zisteau-

 

What else do I watch? I watch commentators play World of Tanks, a game that pits you against 15 enemy players with 14 allies and you fight to either destroy all enemy tanks or capture their flag. The tanks you can play as are based around the end of WWI to the end of the Vietnam War. There are currently six countries that you can choose tanks from: America, Britain, France, Germany, Soviet Union, and China. And there are five classes of tanks to choose from: light tank, medium tank, heavy tank, tank destroyer, and artillery. There are 10 tiers of tanks to choose from. Tier 1 tanks are tanks from the end of WWI all the way to Tier 10 which are tanks that were made after the Vietnam War. If you want to check it out its free-to-play at http://worldoftanks.com/ its really fun and I highly recommend it if you're looking for some fun (P.S. A lot of immature children play [immature meaning kids that call each other names] so be careful and don't get discouraged). If you want to watch some videos of people who play World of Tanks, check out these YouTube channels:

 

The Mighty Jingles-

QuickyBaby-

 

Well I think I'll call it a day, thanks for reading guys! Stay beautiful.


Thursday, November 13, 2014

Teeter-Totter

After Thomas's appointment with Dr. N. on Tuesday I posted a status update here about feeling like I am on a teeter-totter with my emotions concerning Thomas's meds. Someone felt the opposite of me in that they felt better when the meds were increased because it meant that their loved one could get better. I wish I could sign on to that way of thinking but there's one thing that stops me from doing so. It's the side effects. Yes, increasing meds means possibly better days ahead but it's the side effects, or rather watching Thomas endure the side effects, that breaks my heart and leaves me sitting at the ground end of a teeter totter.

We talked a lot about Thomas's issues lately and the whole meeting was so sobering for me as Thomas's mom because I was made aware of things concerning his new (old) delusion that I didn't know about. As it turns out, this new delusion not only plays it's nasty tricks that I have previously mentioned but it also puts a great deal of pressure on Thomas and often takes away his drive to do things and his ability to enjoy things when he does do them. This delusion is a nasty thing robbing Thomas of much of his spirit and I think is a fuel source for a lot of his depression. It really does sound like depression anyway. Thomas described to Dr. N. how he had been building a model the day before and he was getting no enjoyment out of it and instead felt great pressure to complete it and complete it flawlessly. I hated that he felt that way about a hobby that brings him such joy.

After all things considered about this delusion and after trying to brainstorm ways to combat it, one being a very complicated plan that both Dr. N. and I batted between us trying to see what it would look like for it to work. The other, of course, was to increase Thomas's meds. Dr. N. chose the clozaril as the med to increase and once again, all of my fears and doubts about this med crashed in. Dr. N. again outlined what the increase might help but he also reminded us of the side effects. I think I'm going to go back on record as saying that I hate the clozaril.

Do you know what gets me about it? It may seem like nothing to you to be a reader about what I'm going to write about but for Thomas and as his mom, this is a side effect that is difficult to have. You see, one of clozaril's side effects is hyper-salivation. Excessive drooling, especially at night. A lot of us drool at night. We're sound asleep and wake up with a small circle of drool on our pillow and we're kind of grossed out by it but we go ahead and look past it and some of us even laugh. For Thomas, though, it is not a small circle left behind on a pillow rather it's like someone took a small pitcher of water and dumped it on his pillow and the top of the bed. When I go in to wake him I find his sweet face lying in a small pond of saliva and his bed is ruined for the night. We have tried everything. I have bought waterproof mattress covers and pillow covers to at least keep him dry, or so that's the plan, yet without actually covering him in plastic, his pillow is still soaked in the morning and Thomas wakes with pillow wrinkles on his damp face. It's HATFUL. Plain and simple, it's hateful.

On top of that and perhaps less concerning because all of our loved ones go through it is the sedation. I HATE the sedation as does Thomas. The thing is though, he gets knocked out and then it becomes my concern as I watch him go to bed much earlier than usual and I sit here all morning waiting for him to wake up well past his usual time. I hate the sedation because it reminds of me his 3rd hospitalization where he sat before me, brows furrowed in intense anger but unable to really say a whole lot because his brain was slowed down by the sedation. His hospitalization that time broke my heart and for him it was one of his scariest times in his life. He and I hate the sedation and now, here it is again with the increase in the clozaril to combat this very long-standing delusion.

So, I am not sunshine and light about this increase. I pray for it to work but find little faith right now in it based on past experience with it. It's supposed to be the go-to medication for treatment resistant schizophrenia but somehow it hasn't been my go to anything other than, more often than not, for side effects galore.

I talked to Thomas on the way home from Dr. N.'s and I asked him about his side effects. I took his hand and asked, afraid of the answer,

"Is the cure worse than the disease, Thomas?"

He didn't miss a beat and he said no and that he was okay with it for now. Bless his heart because he is much stronger than I am about this. I'll never get over how my quiet child, my unassuming, sweet, accommodating child has the strength and tenacity of 10,000 men as he fights his way through this labyrinth that takes down lesser (wo)men like myself.

Wednesday, November 12, 2014

Addressing Your Concerns

First and foremost I want to address a comment that was made on my blog about my postings lately about whatever this is Thomas thinks (and he talked again about it yesterday) is "inside of him." I cannot emphasize enough that I DO NOT BELIEVE SCHIZOPHRENIA IS DEMONIC POSSESSION NOR DO I THINK ANY OTHER MENTAL ILLNESS IS DEMONIC POSSESSION. I really hate that. I might be coming across that way. I am not trying to set us back, and our cause to stop stigma back, to the dark ages. What I am doing is writing my personal blog about my personal feelings as I struggle with this with Thomas. I am not writing from an uneducated point of view. Believe me. I have been doing a lot of reading on this and I still err on the side that what is going on with Thomas is a delusion. What I will tell you and I'm telling you because what was said pretty much backs up my way of thinking is what Dr. N. said yesterday about this thing "inside of Thomas." This wasn't what I planned on writing about today but it is what it is, I need to address people's concerns about the subject matter.

In keeping with the belief that there is some kind of negativity inside of Thomas let me tell you what his highly educated, college professor, writer of several journal articles, psychiatrist said to Thomas and I yesterday about this "thing". He believes it is a delusion but to both Thomas and I he made it clear that he believes that one prong of the approach to conquer this is to "invite more positivity into his life" and to "tell 'it' that he (Thomas) has no room inside of him for it to occupy him". He also used the word 'nihilism' which means "the rejection of all religious and moral principles, often in the belief that life is meaningless", saying that basically that might apply to Thomas. Another few less scary words to describe that definition is skepticism or negativity or cynicism or pessimism. What he's getting at with Thomas is that he may have a feeling that his life is meaningless brought about by years of depression. After having lived like that for so long, Thomas may view the world in a way that he believes there is nothing good about himself, hence the feeling that "there is evil inside of him (Thomas's words NOT MINE)." It was not lost on me, however, that Dr. N. suggested "inviting positivity into his life" which to me means that whatever you want to label the negativity or presence inside Thomas as, one of the ways to combat it is to bring in light in the form of a higher power, perhaps, or a belief in something bigger than himself. He also backed up my decision to buy Thomas his tiger eye and felt that actually that was a "good idea" since it "helped Thomas feel like he had a positive presence with him."

I do not think for even one second that Dr. N. felt Thomas was demonically possessed but he did make it clear, in my opinion, that it is a negative thing Thomas feels and it needs to be changed in order for Thomas to feel like he owns his whole being. I don't know any other way to take that then exactly how he put it to us and what he said to us yesterday 100% backs up and helps me better explain to you, the struggles I have with all of this stuff with Thomas about the "evil inside of him."

If I am still being unclear to you all, if the backing of a highly educated, worldly psychiatrist, isn't enough to illustrate my point then please, by all means, let me know. Never do I want to set back the progress that HAS been made in helping people to better understand schizophrenia or mental illness in general. I was merely sharing my own struggles and opinions which may not be in line with your own but I am not sitting here behind my computer, mouth hanging open, spouting pure nonsense. I am trying, like all of you, to make sense of this illness, make sense of the words my own son uses to describe his very being and to make it all make sense in the context of my understanding of God or the spiritual world in whatever form it may take.

Personally, I'm with Dr. N. on this one and while this post won't necessarily wrap up the discussion on this topic, what it will do is show that both Thomas and I are going to work to find a way to end the negativity or "evil (again Thomas's word NOT MINE)" that is inside of him. Acting upon the belief that this is a delusion and one that according to Thomas yesterday PRE-DATES EVEN HIS MOST WELL KNOWN, LONG-STANDING DELUSIONS, we will be in this battle for a while and my plan, as it has been from the start, is to share our struggle in the hopes that others can relate and so that you all don't feel so alone in your doubts and confusion and ultimately grief about this particular subject matter.

Tuesday, November 11, 2014

The Talisman's Power

I have got to say from my perspective (I'd love for Thomas to write about this himself though) that it seems like the tiger eye talisman is working for Thomas. I've checked in with him a couple times and he says that it's working some but I see an even bigger picture. I think a lot goes into the shift in Thomas that I have seen in the past few days. He's much brighter though he did isolate himself a good deal of the day yesterday. It hit me last night that what might be brightening him up besides the talisman is the increase in Cymbalta and the dropping off of the Wellbutrin. I've got to be honest, I was a HUGE critic of the Wellbutrin being removed especially if it's because we were blaming paranoia on it. Thomas has been on it for years and has waxed and waned on it paranoia wise so I never really thought to blame it (it was a starting dose, it never got above the lowest possible dose). But he seems to have sailed through the removal of it and the Cymbalta seems to have picked up. It is proof, though, that Thomas was truly depressed, not just situationally depressed like before work most nights when he worked.

Coupled with that has been the existence of the talisman ever since Thomas admitted to feeling like something evil lives inside of him. I have noticed that Thomas doesn't go ANYWHERE without it on. Last night after dark he asked me if he could go to the little mom and pop store by our house and buy a soda for his popcorn that he was going to have after dinner. When I said yes, he was off to his room and I heard the familiar clinking of the stone on the medical alert dog tag being put on. After that, he left to the store. Let's notice one thing here and that is the 1 block walk in the dark. It's further than he's been in the dark alone in ages. He went, though, and I am so proud and excited for him.

So who's to say if it's truly working or if it's the Cymbalta or if it's both things but I am glad that things have improved. I think this is a perfect example of the power of suggestion. Then again, and dare I utter this (?), perhaps there might have been something negative, something malevolent attached to Thomas and it's been "scared off" for now. I know, I know, let's not buy into the whole demon possession and mental illness thing. I still do not believe that schizophrenia is demon fed, not in the least, but there's a part of me that does believe that there is negative energy (as well as positive) around all of us and if the folks who believe in crystals and rocks as healers are right then that tiger eye is most certainly doing it's job.

The true test will come today at his appointment with Dr. N.. I really wish I could sit in on the whole thing and hear all that Thomas has to say. IF Dr. N. even read my email then he does have a heads up about the evil and the talisman so he'll be able to ask some pointed questions. It is the answers to those questions that I am most curious about. I still haven't heard more than a short email from Dr. K. saying he was going to employ his usual therapy for Thomas. I wonder what he truly thinks of me having bought Thomas the talisman and how much will he buy into the fact that it seems to be working? So many unknowns and perhaps I'll get my answers today.

Either way, Cymbalta or talisman, or both, Thomas is brighter, shinier, happier than he's been in the weeks prior. He's even seeming to enjoy work more thanks to his new manager that thanks him constantly for his good work. We're in an upswing now. Hold on tight to it, I tell myself, because it can change on a dime.

Monday, November 10, 2014

A Little Social Interaction

After having been completely isolated from friends for weeks now, on Saturday Thomas got a call from who I like to call "The Good Kids" and they invited him out to play airsoft b-b gun wars. I hadn't seen him this full of energy in a long time as he emerged from his shower breathless and asking for a quick breakfast because the guys would be there any minute. As he gathered all of his stuff, his gun, his vest, his eye protection and his hat (this time with a Transformers Decepticon patch attached to it) I made him a super power smoothie and felt nothing but joy that he was finally going out.

I call the kids "The Good Kids" because they come from good homes, they are good Christian kids, they don't drink or party and THEY LOVE THOMAS. There hasn't been a time that Thomas came back from an event with him that he wasn't happy. This is important. I'm not quite sure if they know he has schizophrenia though if they did, these are the kinds of kids who wouldn't care. Thomas is EXTREMELY BLESSED to have these guys in his life and in the bigger world containing those with schizophrenia, I know he is one of the lucky few that has friends to hang out with. Dr. Sanjay Gupta said in the last Twitter chat that only 37% of people living with schizophrenia have a social life and I immediately jumped on that tweet and told him that Thomas was one of the lucky few. Believe me, as his mom and as his caregiver I don't take that for granted.

It was just the other day that I was asking Thomas to seek out some friends and that was met with a quiet reply of "I've got things to do today. Maybe tomorrow" and I knew it wasn't going to happen. That's also why I love these kids because even though they lead busy lives, most of whom are in college now and most likely have flourishing social lives, they never seem to forget Thomas and they call him for every "war".

I was talking Thomas through some anxiety about blogging yesterday (he couldn't remember what he should write about) and I told him that you all would love to hear about his day with his friends from his perspective. Obviously I wasn't there so I don't know all that happened but I thought it would be great for him to share about what they did and hopefully about how he felt. I expect I'll sit by his side through a few of his posts to help give him bullet points of things to talk about. His brain is still pretty stuck in one or two places and expanding it to include and post about all aspects of his day is a tall order without some kind of prompting. I'm hoping with time his brain will loosen up and he'll be able to write freely on his own.

So today begins a new week for Thomas. Yesterday we took his picture for his first post and the rest of this week is first, for him to come up with what he wants to call it and then from there there are a lot of things to do. Tomorrow will be Dr. N. (who annoyingly never answered my email about Thomas's delusion about the demon) and we'll see what he does with meds. Thomas reports that the tiger eye is working so there may end up being no more changes in meds. Then on Thursday is Dr. K. and therapy. Last week Dr. K. cancelled due to illness so we haven't really gotten started on working on the delusion so hopefully that project will begin this week. We also have a call with Social Security about his income and some sort of determination concerning it and then Friday Thomas works. It's a full week but if all goes well it should be productive.

So, the story of "The Airsoft Wars" is Thomas's to tell so I'm sure you'll hear about that soon. He came home happy and to me, that is all that mattered.

Sunday, November 09, 2014

Surprise!!

Okay.

GuesWhat, GuessWhat, GuessWhat...

Thomas agreed yesterday, with a joy and excitement I haven't seen from him in a long time, to write a guest post once a week for a while. Your support and thoughtful questions and requests inspired him to want to write and he is fully willing to open up his life, with HIS words, for all of you. As his mom this is an amazing moment and an amazing gift as I can see that this could be really good for him once he sees that his writing and his gift of himself to you will heal him in ways I didn't think were possible for him. He will have a voice that he's never had before and I am exited myself to read what he writes but am even more excited for all of you to get to hear from him.

I want to, and all of you should too, thank my new friend Carrie S. for the way her love and support moved me yesterday. Having someone in flesh and blood show the kindness and strong support that she did for myself and for Thomas yesterday really opened my eyes to the difference I am making here with my blog. I knew that I touched a lot of you with what I write but to look into someone's eyes and see the manifestation of that in real life really brought home to me that the work I do here and the sharing of my life and Thomas's life that I do here actually, really makes a difference and I am HONORED to do what I do for all of you. Without you and your support and your love, I am just me, here in my small town, sitting at my computer, writing my heart but with you here in my life through your comments and 'likes' and shares, opens my world up in unimaginable ways and you inspire me to be more and do more with my efforts so that I can continue to change lives like you all have changed mine.

It is that same love and support that will now inspire Thomas and he and I both have nothing but gratitude for your presence here on my blog. I printed up all of your suggestions and questions for Thomas and I will, now, keep it forever as a symbol of your love for my boy. Almost as much as he is mine, he is now yours too and all I will ask now and continue to ask in the future is that you show him nothing less than you have already shown me with your support thus far in mine, and especially his, journey. He is to be protected at all costs and I will watch over him from my end and I am trusting you all will be the amazing people you have already been to me, to him.

His eyes are lit up, his spirit is brave and confident and he is already planning ahead for his posts with ideas lined up to fill many many Friday's for the foreseeable future. I am so excited about this, I can't tell you enough and I wait, by your side, to see what he comes up with to contribute to this place of education, stigma busting, enlightenment and acceptance. Give him time to grow into his new role as he becomes more and more confident in his writing style and his understanding of your support for him. I see a tiny sapling tree turning into a mighty oak over the months, and perhaps years, ahead.
This is a wonderous day here in the Jimenez/Thomas household. I am looking forward to the future here on my blog.

I love you all!

~Melanie

Saturday, November 08, 2014

Thank-you!!

(From my Facebook blog)
 
Oh my gosh, thank you everyone for responding to the post "Thomas's Story" with ideas for him to write about. I am printing them up as I type this for him to read through. You have given him so many good ideas. As I said, when he and I first talked about this he was kind of hesitant and cited his writing skills as the reason why he wouldn't do it but seeing how much you guys love him and care about his life should show him that his thoughts are very important to you all. I'm not going to lie, I am going to gently encourage him to go through with this.

Not long ago he and I had a conversation about what he misses in his life and one of the things he said he missed was his prolific writing he used to do in high school. Granted, in high school, he was quite sick and I think his illness fueled the writing but here, now, you guys have given him a different way to channel his writing into something healthier. I am very excited for him and I really hope he'll do it. My plan is to have him to write a post for every Friday. I don't want to push him into much more because he doesn't want to lose his chances to play his video game or watch YouTube. You know how important those things are.

My other thank you goes out to Carrie, a woman on my blog here who reached out to me. She lives in the next town over from me and we are literally separated by a blue bridge spanning the Snake River and she has been reaching out to me every now and then to go have coffee and I have been hesitant because I'm not the most social person. But she, too, has a son with schizophrenia so she knows what I go through and I know what she goes through. It's a perfect match for us to be friends. I will let you know how that goes in my blog tomorrow.

The great thing about Carrie and I is that we have the opportunity, based on our experience, to turn our respective towns upside down first by breathing some life into our local chapter of NAMI which leaves A LOT to be desired right now as it is only made up of a few people and they meet just once a month and there's never been a fund raiser or awareness campaign in this town. I think together we could find the strength to make a difference and I hope over time as our friendship grows, we can make a real difference. I have a lot of dreams for the future of our towns and I want to make them a place of tolerance, lowered stigma, intelligence, thoughtfulness, with people well informed about mental illness and just generally an enlightened place to live for the mentally ill and their families. It's a pretty big dream but I wouldn't have gotten where I am now (writing as much as I do--which is my lifelong dream) without believing in myself and working towards the thing I want most in my life for myself and that is to be a writer.

So, we shall see. I am very excited to meet Carrie and I look forward to hearing about her life and how she copes. She's had a lot on her plate after her son having to be hospitalized long term to now him coming home to live with her. The last I heard, it's going well having him home so I hope that things stay on that path both for her and her family and most especially her son.

I will also post a few articles today, just some things I found throughout the week so, as usual, be looking out for those. This should be a good day. I wish the same for all of you.

Now, go out there and make it the best you can and if all you can do is hang onto a thin thread of hope right now then by all means, hang onto it with everything you've got. Sometimes that is all we have to hold onto and I think it is the most important thing of all when it comes to this illness.

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