Saturday, February 28, 2015

Chosing To Live Again

On this day, the day that is the 1 year anniversary of my dad's death I look back on my life in the past few years since both my dad and Thomas got sick. First it was Thomas with his very first psychotic break and accompanying that came a grief I thought I could never feel so deeply. Then my dad had his stroke and shortly thereafter Thomas was hospitalized and what ensued was now 3 years of heartbreak culminating on this day, February 28th, 2015. It is very easy to tap into the grief of both losing my son to schizophrenia and losing my dad to dementia and finally death but I look at my life now, a year after my dad's death and with Thomas now stable and I think to myself,

"What do I do now?"

This morning I am not crying about losing my dad and most certainly I don't feel grief about Thomas since he is doing so well, so it begs the question,

"When all of the tragedy has mellowed, when time has healed the wounds as much as is possible, when still a life stretches out before me yet to be lived, where do I go now? What should be the next step in my journey?"

The answer came to me pretty quickly and what I have to offer is this.

Go. Live your life. Make a difference. Make your dad proud as if he were still alive to see you accomplish things. Teach your son to be independent. Relish all of the light that surrounds your son now that his mind is clear and he's become someone you never thought he'd be 3 years ago.

Let go.
Move on.
Live.

I have begun teaching Thomas life skills like laundry and how to cook and as part of my new plan to "live my life" I am slated to go on a trip with my mom to Seattle next week for 4 days and after that in April the family will go on a weeklong vacation to the ocean and after that will be the all-important 3 day conference I told you about. In between all of that are things scheduled on the calendar to be done. Mostly they're doctor's appointments and hair coloring appointments and the like but the full calendar means that it's time to embrace the freedom from grief, longing, desperation, and the long days of hiding out from the world.

Last night Thomas and I had a very important talk about my upcoming trip to Seattle. For 3 days he will have to completely fend for himself for meals and for getting himself to work and he's going to have to do it with a bravery he is only just now starting to cultivate. I taught him how to make a hamburger in the microwave last night and how to clean up afterwards and also how to make the meal a complete and healthy one. I told him that I would be gone soon and that he was going to have to hang on to these skills in order to take care of himself while I am gone. He was excited. He was shaking but he was excited...or ready anyway.

My leaving for Seattle will be the first time I am away from him since I went to Vegas a year ago. Back then he spent most of his day terrified and lonely and my whole trip was overshadowed by worry about how he was doing. I got countless texts that broke my heart talking about being lonely and scared and that he wanted me home with him. He was struggling and I was too far away. This year, next week, I hope that the story will go differently.

He is okay now. He is talking to strangers in an animated way, he is expressing interest in others lives and carrying on question and answer sessions with them and he is now a huge part of the family. He is a changed young man and as such, it is time for me to live a life independent of him.

My dad is now gone. He is in a better place and in a way, the Thomas I knew for years is gone now too. There is no reason not to celebrate this and no better way to do that than to make plans for the future and begin to LIVE.

February 28th, 2015 is the anniversary of when I lost my dad and February 28th, 2015 is the day that I know with all of my heart Thomas will wake up clear-eyed and ready to face the day and today, February 28, 2015 is the day I choose to live again.

Friday, February 27, 2015

Friday's With Tom--How I Handle My Schizophrenic Thoughts


Hello guys, Tom here and welcome to my blog.

A while ago my therapist, Dr. K, bought me two small, plastic, blue buckets. He labeled each one of them. One says, “Distressing thoughts or beliefs” and the other “unknown.” He also gave me some note cards. What he wants me to do is every time I have a schizophrenic thought I am supposed to write it down on one side of the note card, write something to challenge it on the other side and stick it in the appropriate bucket.

Recently I had one schizophrenic thought. About a week ago my dad and I were helping my grandmother move into another house. During the move I had a thought that the police might come arrest my dad and I for stealing. The challenge I wrote was that

“My grandmother will explain to the police that my dad and I were helping her move items from one house to another.”

I stuck it in the bucket and brought the card to my therapy session and we talked about it.
Personally I think the buckets are a great idea, I've started being able to point out to myself thoughts that might be schizophrenic or non-schizophrenic.

Well that's it for today's post hope you all have a great weekend and as always, stay beautiful.

Okay, Well, Never Mind



I posted this picture with my blog post this morning because it was a bit reminiscent of Thomas's therapy yesterday. After all of my worry about his chest pressure and all that he had said to me about how it bothers him, I sat in therapy for part of it yesterday while he was being questioned about it by Dr. K.. Dr. K. asked him lots of questions about it like how much it hurts, how long it's been there and how much it bothers him. It was that last question that threw me as I heard Thomas answer that on a scale of one to ten it bothers him about a zero or a one.

What?

Well, that's not what he had told me previously but I guess we're going to go with that for now and I guess that means I can relax about it. I sat there kind of shocked because when we were in his doctor's appointment he talked more about how it felt and how it bothered him after an exchange like in the picture below.

It does make me wonder what's going on here. He often has trouble with his memory and more often than not he does turn to me to explain to a doctor what he's been feeling and what's wrong so I'm kind of used to it all. In yesterday's case though, everything I had been told was just about the opposite of what he told Dr. K.

Okay...so...the pressure isn't that bad. That's good. Whether or not it's a hallucination I suppose doesn't really matter at this point because it's not something pressing to worry about. Sometimes one must just leave the symptoms alone and move on to more important things. I do know for sure now that he still does not believe it's evil occupying his body so that's good. I'd hate for him to pick that back up again.

I was excused from therapy early which was just fine with me since clearly my services were not needed. I do know, though, that they didn't work on his cognitive symptoms so there isn't much to report on remedies for that. I know some of you are wanting to learn new ways to cope with those difficulties so it is my hope that Thomas and Dr. K. will get back to work on those things next time.

Other than all of this, I will open the floor up to Thomas at 9 a.m. PST for his Friday's With Tom. He's going to talk about something that I had already mentioned but I always like it when he shares things from his point of view. I believe you all like hearing that from him and as such, in this case, I'll leave him to tell his story about how he experienced a schizophrenic thought last week.

Thursday, February 26, 2015

An Amazing Opportunity To Make A Difference

A couple of weeks ago I got an email inviting me to "an exclusive, invitation-only conference to join other members of the online health advocacy community for the first-ever HealtheVoices Conference designed to bring together advocates from a variety of areas of health to learn, share and connect. It seeks to provide valuable content, such as tips to further engage and grow an audience, thought-provoking conversation and networking opportunities for online health advocates."

At first I wrote the email off to spam even though it named Janssen (a big drug company), Johnson & Johnson and Everyday Health as the hosts for the event. I just didn't believe it was real. Another part of me, though, thought that it just might be real so I forwarded the email to my main email address, read it to my husband and then left it sitting in my box.

Then the day before yesterday my husband came home from work and out of the blue he told me that I should go to it. Still not really believing it was real I decided to click the link in the email and it sent me to a website with a better explanation of what's going on and a place to register for the event. Suddenly it was VERY real. I went ahead and emailed questions about it to a couple of the event coordinators and heard back from them yesterday and they were very excited that I was showing interest in the conference and they provided me with a wealth of information about it.

What at first was potential spam has now turned into a real conference hosted by Janssen, Johnson & Johnson and EverydayHealth and I have decided to attend. It is such a great opportunity to meet others in the health advocacy field and I am deeply honored that I was chosen. They expect 90-100 people to attend and I am shocked and honored that out of thousands of people out there in the online health advocacy community, I was chosen to come to this event.

It takes place in New Jersey at a very nice hotel where each room overlooks the Hudson River and has views of the Manhattan NYC skyline. This is not a small thing, the hosts are big time companies and websites and I believe they are going to change my life and ultimately (it is my hope) this page and its audience. I intend to go and "make some noise" and network with others in the healthcare advocacy field and I plan to be one of the "HealtheVoices" that they are talking about.

It will take place April 17th-19th and it will be at least one full day of meetings and breakout sessions where all of us in healthcare advocacy can get together and learn from professionals and each other. It is truly an AMAZING opportunity.

In the past I was given other offers that were tied to my work here on the page and some have fallen through leaving me disappointed because I really wanted to make a difference with my message I work so hard to get out there. But those lost opportunities appear to have left the door open for this opportunity to arrive and change my life. Since my dad got sick and then died I have often wondered why God was doing all of the things that he was to my family and to me but I learned to have faith that there were reasons behind it all and that I just needed to be patient and live my life the best that I can and eventually the why's of things would be revealed to me. So, here it is, one of my why's.

Now, I really wanted to share this news with all of you because you are my family. I think about you all a lot during the day and when this opportunity came through I couldn't wait to tell you. As time marches towards this event I will keep you up to date as I learn more about it. I will open the floor to all of you as time goes on and we learn more about what's going to happen at the conference and I am going to ask you all to help be one of the "HealtheVoices" in the conference. I will be going to this alone physically but I will be taking each and every one of you with me. These are big players in the game of mental health and healthcare and they will all be in a room with me (and others) to listen to what I have to say.

I really hope that you all will be excited for me and for this event. Things like this come along once in a lifetime and I know I have been given a priceless gift by being invited to this conference. As such, I do not want to squander even one moment of time there and I want to make a difference and I hope I can do that with help from you all.

Wednesday, February 25, 2015

Could It Just Be Indigestion?

I posted yesterday's post to my website yesterday and I got the nicest comment from someone who suggested that Thomas's chest pressure could be indigestion or GERD (Gastro Esphogeal Reflux Disease--I think that's what it's called). She left me a lot to think about. She also worried that I hadn't done enough tests to rule out other things and pointed me in the direction of some websites to check out. She really wanted me to be able to relax and not worry that this is a schizophrenia thing. Then I got on here today and I saw comments from a few of you that mentioned the same thing. Indigestion. You all couldn't be more right but let me tell you something.

During Thomas's original doctor's appointment Christie pressed on Thomas's sternum and he reported pain. He also had pain in his stomach. She immediately jumped on some kind of acid reflux issue and she gave him a prescription dose of Zantac to help it. That remedy made the most sense at that point in time. Thomas has been taking the Zantac for a month now and while his sternum pain and stomach pain have disappeared, he still had the chest pressure. Christie felt certain that she had made a good call on that one as far as the reflux goes and she thinks that he might have had a small ulcer that the Zantac healed. So, yes, he did have acid reflux or some stomach related issue but that has been resolved now and he still has the pressure. On top of that they did enough heart tests to know that he has an extremely healthy heart (thank God) so it's not a cardiac issue at work here.

So, now I must speak to my unrest about his chest pressure and my feeling that it might be a somatic hallucination of some sort. After feeling like I needed answers I went ahead and looked up somatic hallucinations and read many accounts from many websites. What I did discover that made me sad is that a couple sites actually mentioned chest pressure as a sign of a somatic hallucination. I didn't actually think I'd find such a direct correlate between the chest pressure and the possibility that it is a hallucination. Since then, I have been feeling kind of sick and a lot anxious. The thing is, Thomas has had this pressure for a long time. He had even built a delusion around it believing that he had a demon inside of him pushing from the inside trying to get out of him. Somehow Dr. K. and I managed to fix that belief really quickly and as far as I know now, he does not believe he has a demon inside of him. But what about the pressure?!?!?

I spent part of the day with Thomas yesterday driving around running errands and being in the car together is usually the time I am able to talk to him about his symptoms. This time I just didn't have the heart to bring it up. I thought about all of the times we had sat in that car and he had revealed to me some delusion or hallucination that he had and I had to gently tell him that it was his illness that was creating those and that they just weren't true. Those talks have always been so hard because I feel like, in a weird way, I am taking a piece of him away, like I am breaking his heart. For him to believe these things with all of his being and to have to tell him that they're not true has become one of the hardest conversations to have with him. So yesterday I just couldn't do it. I couldn't tell him that the pressure might not be real, that it could be his illness. What he feels is so real to him and I think discounting it to something like a hallucination is almost cruel. It is his physical being after all and we all know that when we hurt or are sick that the first thing we want is for someone to believe that what we feel is real and we deserve compassion.

So, I left it alone and plan to for now. I did email Dr. K. about it and basically put it in his hands. I haven't heard back from him so I don't know what he thinks about it. Just this one time I don't want to be the one to break any news to Thomas that might indicate to him that what he feels and thinks isn't real. He is disturbed by the feeling of pressure and what he needs right now is support and love. I tried to think to myself about it that "what harm does it do to just leave it alone?" but I also think that if there's a solution to the problem and if the solution is finding a new way to view the pressure (that it is in fact just a hallucination) then I want to resolve it for him.

For now, though, I am leaving it alone and I will keep my beliefs to myself about this. I don't think that I'll necessarily be able to relax per se but I think giving it some more time is worthwhile. I just want Thomas to have as normal a life as possible and he has been having that pretty decently lately. I may write here about my thoughts and feelings about this issue but for Thomas I will keep my mouth shut for the time being and just let him be his healthiest self that he's been for weeks now.

Tuesday, February 24, 2015

Good Results, More Questions

Yesterday was Thomas's follow up appointment with his primary care provider and this was really the moment of truth in terms of finding out the bigger picture of what is going on with Thomas and his chest pressure that he once believed was created by a demon living inside of him. At his last appointment they had done an EKG and they took a ton of blood to test for all sorts of things and yesterday was about finding out about what the blood tests revealed.

His PCP, Christie, came in and pulled up Thomas's labs on the computer and begun going through them piece by piece.

Thyroid--normal
Blood sugar--really good
Pancreas--good
Liver--normal
Cholesterol--LDL a little high but we'll watch and wait on that
Kidney's--good

And so on and so forth. There wasn't a bad reading in the bunch except for the cholesterol one. Right then and there I was so relieved. I had dropped the ball big time when he came out of his last hospitalization when while he was in the hospital they tested his blood and his thyroid was low. They had put in the discharge instructions to follow up with that and I never did. Now, with all of these tests having been done, I felt much better. His PCP felt that we couldn't have gotten a better result. I agreed.

Then the conversation came back around to his chest pressure. It's still there. So what the heck is causing that?!?!? His PCP said she could try and get an electrocardiogram (an ultrasound of the heart) past the insurance company but she didn't think it would go through and besides, she said, there is really no reason to do that. Basically his heart is cleared at this point and watching and waiting is the order of the day.

Still concerned about the chest pressure I requested a chest x-ray. His PCP felt that was well within reason and she got Thomas over to radiology to get that done. After he left the room I called her in. I told her that I believed that this could possibly be a somatic hallucination and she agreed. She said that her primary goal, knowing that Thomas has schizophrenia, was to make him feel better about what's going on with him and I really appreciated the compassion she shared. What I loved about her was that his records stated that he does have schizophrenia and she acted just as a medical professional should and she ordered tests that would help Thomas to feel better about what's going on in his body. She didn't write him off as just some mentally ill man and not do the necessary things to examine him fully. I know that it's not always that way in the world of medical professionals and I couldn't thank her enough for caring so much about Thomas.

The x-ray came back and he was the picture of health. His heart is a normal size, his spine looks good and his lungs and ribs look good.

So....nothing to explain the pressure.

Ugh.

While he was deemed "the picture of good health", for the rest of the day I couldn't shake this whole chest pressure thing. Thomas and I had talked during the appointment and he said that it really upsets him that he has this feeling inside of him. How do I fix this?

As my day wore on I found myself in familiar territory. Schizophrenia territory--where you know you're up against something that isn't real and you have to figure out a way to help. If it's a hallucination, here I am, again, back in uncharted schizophrenia territory where I'm once again fighting something that just isn't real. I really thought he was done with all of this for a while.
By evening time I was beside myself and talking to my husband running back through all of the medical tests and any other reason the pressure might be there. I couldn't shake the uneasy feeling that this is Thomas's schizophrenia at work. I am so disturbed because I would like for him to just have some peace.

We do live to fight another day, however, with his physical health having been checked out and him having passed with flying colors. How to remedy the chest pressure is a whole other animal though. Thomas has claimed that he no longer thinks he has a demon inside of him but he does still wear his tiger eye (it's meant to protect him from evil) around his neck so I'm not sure if he's totally let go of that belief. Really, at this point, though, we must just move on and hope that the pressure will go away. It doesn't change that I am worried about him and worried that this is a little bit of schizophrenia hanging on but for now I am powerless against it.

Monday, February 23, 2015

The Long Road To Recovery

Last night I stood with Thomas as he waited for me to give him his pills. It was Sunday night which meant that his weekly pill case needed filled. I put two types into his cup and then picked up the Cymbalta and looked at the bottle absentmindedly. I was curious, for some reason, what the commercial name was for Cymbalta since the pill bottle just said Duloxetine. On the bottom in little print it said Cymbalta and a flood of emotion came over me. It's the Cymbalta that has done it. It is the Cymbalta that has brought stability to Thomas's life and really to our family's life.
I put my arm around Thomas and I said,

"I am so glad that you are doing better. The last three years have been hell for you and I can't believe we are standing here, now, in this place where things are almost normal and you are doing well."

He agreed that it had been hell and was also thankful for the break from it all.

We talked about the medications and how each one had changed something for him and how all together they had turned him into this stable young man standing next to me. I looked at the Cymbalta and it was the Cymbalta that I credited for the change.

Before it came into our lives, stability was fleeting. We'd have a few weeks, at best, here and there but we could never quite hold onto stability. Staring at the Cymbalta bottle I felt emotional because we had just had a nice day with his grandma and Thomas had participated in most of it--when he wasn't playing video games on his Nintendo DS--and for once in I don't know how long, if ever, he had actually been a part of the family. He sat and listened as we all talked about mental illness in our family and we went back through time and how, for him, his whole journey had begun with his trichotillomania (hair pulling) and a call to a Dr. K. I didn't know and wondered if he would be able to help Thomas. We talked about how we had seen other family members miss the burgeoning signs of mental illness and we thanked God that I had acted immediately when I had discovered Thomas's trichotillomania. The truth is, at the time, when I found that first chunk of hair on his bedroom floor, we had already been through so much with him. So many signs had been missed, being chalked up to typical preteen and teenage behavior, because I didn't know any better but with the trichotillomania it all couldn't be ignored anymore. Thomas was struggling and what ensued was a descent into schizophrenia that for years we didn't know if we'd ever get him back from it.

Thomas talked last night about how his meds had helped him. He stood beside me thankful for them and I knew in that moment he fully understood how important his meds are. I told him that I didn't want him to ever go back through the hell of the last few years and he said he never wanted to go back there either. As just a mom and as a mom of a son diagnosed with one of the most debilitating mental illnesses on the planet, I was grateful for that moment with him where clarity gave us vision into the past, the present and the future. He had spent years afraid, anxious, paranoid, delusional and hallucinating and in that moment last night it seemed like all of it had been a very bad dream.

I finished filling his cup with meds and he began taking each one one at a time and he went to his room leaving me standing in the low-lighted kitchen returning multiple bottles of pills to the bag that I store them all in and keep under lock and key.

He, then, came back out to me and he said that he agreed that along with me he had also seen signs of someone close to us caught in a deep depression and even appearing suicidal. He had seen it just as I had and we both felt worried about the fate of this person close to us. In my memory I thought about the time that Thomas had been threatening suicide and I thought about how that had been a catalyst for his first hospitalization followed quickly by his second that yielded a diagnosis of schizophrenia. Missing the signs of a suicidal teenager had been a mistake that I wouldn't make and here I was, standing with my stable young man, thanking God that he stood before me reaching out for a hug.

It's been a long road that brought us to last night and my peering at a bottle of Cymbalta finding relief that things are the way they are right now. I know it's not over, I know that schizophrenia is still there but in many ways, after last night, it's become a distant memory, one that I am happy to put in the past. As I sit here this morning I wonder to myself,

"What will the years ahead bring? What has been laid out, predetermined, or created by God for Thomas's future? Have we been given a priceless gift that, if nurtured, will remain for a long time or are there years ahead with another fight for his sanity?"

Who's to say exactly. Nothing is promised with the illness other than statistics and countless experiences of others who walk this path and are struggling or who live a stable life. The promise lies in the fact that we just never know what will come next but for me, for Thomas, for now, we are thankful for this moment of peace in an otherwise chaotic life of mental illness.

Friday, February 20, 2015

Friday's With Tom--Solutions For My Cognitive Deficits



Hello guys and gals, Tom here, and welcome to my blog.

Last week I talked about how I have cognitive deficits. Well today we're going to expand on my cognitive deficits and the solutions we're coming up with (“we” meaning my therapist, mother, and I) that will help solve the problem.

 Today in therapy I learned about a new type of deficit that challenges me. It’s called “working memory.” Working memory is short term memory. There are three types of working memory according to simplypsychology.com.

They are:

       1. Central Executive which drives the whole system and allocates data to the subsystem and also deals with cognitive tasks such as problem solving.

       2. Visuo-Spacial which stores and processes information in a visual or spacial form.

       3. Phonological Loop which is the part of the working memory that deals with spoken and written material. The Phonological Loop is made of two parts:

·         Phonological (inner ear) is linked to speech perception and holds information in speech-based form for about one to two seconds.

·         Articulatory Control Process (inner voice) that is used to rehearse and store verbal information.

To further analyze my thought process, my therapist gave me a problem to solve. You know the one with the fox, chicken, and bird seed problem where you have to get the three across a river without one eating the other? Yeah, that one. I didn't do so hot on that. But then again I don't expect everyone to finish the problem. I remember in high school being asked this puzzle by a teacher and about 80% of the class didn't get the puzzle correctly.

After that my therapist gave me two solutions to the working memory problem thing that I have:

Turning tasks into memorable acronyms or repeating aloud the steps then saying them in my head. I jumped at the acronym solution because I've already been making acronyms since 9th grade.

Well this post sure was a lot lengthier than normal. Anyway, that's it for today's post, hope you have a good weekend and remember, stay beautiful.

He Will Lead A Revolution After All

Yesterday was therapy day for Thomas and we talked a lot about his cognitive deficits. Thomas has written an amazing post on this for today (to be posted at 10 a.m. PST) so I won't say much about the session here. One thing that did come up were a couple comments from Dr. K. that really struck me. He said to Thomas,

"I notice that in your blog you are very well-spoken. When you're in here, however, you don't speak as much. Why is that?"

We talked about that a bit and part of it we discovered is because he feels like he writes better than he speaks. Ah, like mother, like son. I could totally identify with that. I did mention to Dr. K. though that I do help him a little bit in developing his posts by asking him questions to answer. Usually when the day comes to write a post he is a bit frozen about what to write about. I tell him now that people care about what he writes and want to hear from him and they are interested in any facet of his life. I also am trying to teach him how to tell a story about his life instead of just writing out a few sentences. He has always been a good writer but lost that along the way once schizophrenia came along. I know he can write about Gundam's in the future but he has to learn to find value in himself and his story so that he feels free to share. His self-esteem has taken a huge hit over the last few years and I want for him to find himself a valuable person once again. I think back to when he was younger and that kid had amazing confidence. In his circle of friends and even often with strangers there was no shell that he hid behind. It is that kid (young man) that I want him to find inside himself again through his writing.

I will say, happily, that it appears that Dr. K. really approves of Thomas writing his blog. Ever since I shared the link to this blog and my website with Dr. K. I have waited in a kind of fear for his responses to what I write. I respect him and I want his respect in return. I don't want for him to feel like what I am doing is somehow damaging Thomas or the cause in general. So far, however, it appears that he's happy about the work I do and even happier that Thomas contributes like he does. He has even commented here on the blog on Thomas's posts to help encourage him and Dr. K. making his presence known here on the blog and in support of Thomas is greatly appreciated by me. He believes Thomas is making a difference and that makes me proud of my son.

In talking a bit yesterday about Thomas's contributions here Dr. K. made the most profound statement. With Thomas being stable now and his delusions having evaporated that has meant that Thomas's belief that he was a world leader and would lead a revolution has disappeared. Dr. K. however took a moment to make a point to Thomas:

"It's not the revolution you thought you were going to lead Tom but in another way you are leading a different kind of revolution with your writing and how if affects others."

There it was, the statement that changed my life and I believe changed Thomas's too. His revolution isn't about exacting change in American government or in the world as a whole but here he is, with an audience of over 5000, sharing his life and he IS making a difference. His revolution now is within the mental health education community and he has the power to make a HUGE difference.

HE WILL LEAD A REVOLUTION AFTER ALL!

After session we drove over to get his prescriptions and I generated an idea for his post today. We came up with a plan and I took the opportunity to remind him of what Dr. K. had said.

"Thomas, you have to change your focus. You aren't the world leader that you thought you would be but you, my son, are going to make a difference in this world after all. Embrace your new role and make it your mission to change the world through telling your story and helping others."

I also told him,

"I know of a young woman who is struggling right now with cognitive difficulties and she is hating herself right now and wants solutions to her problems. She is desperate for relief and she is asking for help. I promised her I would share what I could about what you and I learn in therapy about your cognitive deficits and how to handle them but it is you that should be doing the teaching. I may have only talked to one person about this but, out there in the world, there are so many others struggling with the same thing you are and you have a forum where you can share your experience and educate others at the same time and you will help them through their struggles."

He smiled and I could see light in his eyes. He has got to realize how lucky he is and how special he is and I think he's slowly starting to get it. I know that he had a different dream (delusion) but our dreams don't always come true in the way that we had hoped. Sometimes we are a bit off the mark in how our dreams will come to fruition but as long as you hang onto the dream it will become reality. In Thomas's case his ultimate belief was that he was going to change the world and while he's let go of the delusion that he's a world leader in government, he still is headed in the direction of making his dream come true. I am pretty biased, I am his mom after all, but I do see a life for him where he can be important and valued and I think that life has begun here every Friday for over two months now. Friday's With Tom is his platform, his posts are his battle cry and with love and encouragement and strengthened self esteem, he will be a leader within the mental health community someday.

He will lead a revolution after all.

Thursday, February 19, 2015

On Autopilot And Faltering

I turn today's post to my own personal life in the last few days. I realize that this page is about schizophrenia but it is also really about the larger picture of mental illness. That is why I often choose to include my own struggles with my bipolar because a complete picture of a family living with mental illness is worth a post or two here or there.

Perhaps you didn't notice and if you didn't that's good in some ways, but I have left this page on autopilot for a couple of days. I know the articles that you all appreciate have dropped off and even my daily personal postings are sporadic. All of that is indicative of my very own brain lately.

Somehow this year, as opposed to years in the past where this blog is concerned, I am really struggling maintaining it. Part of it, of course, is that Thomas is doing well so there isn't a lot to write about where he is concerned. He has a few hiccups here and there but for the most part he's cruising along pretty nicely. The other day when we were moving my mom to her new house Thomas did experience some paranoia and I was proud of him when he came home and he put his "schizophrenic buckets" (that Dr. K. designed) to good use. He wrote down his paranoid thought and a challenge for it and there it sits, a lone 3x5 card in his blue schizophrenic bucket. He has therapy today so I know he'll be toting the bucket into Dr. K.'s for them to review together. My own personal thought on his "schizophrenic thought" was that it was pretty harmless, a flash of paranoia that lasted maybe a couple of hours, and he didn't let it slow him down. It should be in the bucket, perhaps more because the buckets haven't been used at all and they need a little love, but more than anything it shows that he was aware of the paranoid thought and he figured out for himself that it was just that.

A thought.

I turn now, though, to my own personal life. Many of you have said that you want to know about my life just because you have come to know myself and Thomas intimately and you care about what we both deal with. The truth of the matter is, right now I am really struggling with my bipolar. Or, perhaps, it's grief. Or perhaps it's physical. I don't know really for sure because it's all just a jumbled mess inside of me and it's overloading my brain.

The best way to describe what's going on in my brain right now is that there is a combination of racing thoughts, an inability to put a plan into action, some depression and a huge lack of motivation. What's difficult to deal with it allowing the racing thoughts to reside in a depressed, unmotivated brain. Imagine a game of tug o' war. One side says,

"GET UP AND DO SOMETHING!"

and the other side says,

"I. can't. move. from. this. place. I. am. rooted. in.

It's a very draining experience and worse still is that intellectually I know all of this is going on but I can't get my intellect and my emotions to line up.

All of that I am pinning on my bipolar.

Then there is the grief. So many people feel like, given enough time, that a person should let go of their grief over the loss of a loved one and that there is a time to move on. I can't seem to do that. On the 28th of this month will be exactly one year since my dad died. I know one year is a long time in the scheme of things but for me, the day he died, the finding him laying there in his bed dead, the dealing with the coroner, having to make ALL the calls to EVERYONE that he had died, and most importantly the night I spent with my mom the night my dad died where I laid next to her in her bed as she cried uncontrollably and I begged God to help me, repeating over and over to myself,
"I am only one person. Please God, help me help her."

That day could have been yesterday for me and now here I am approaching THE DATE that I lost my dad and it's all fresh all over again. So there's that. Grief and bipolar all jumbled together.

Making matters worse is my new exercise obsession. It's fantastic to want to be in shape and lose weight but it turns nasty when someone does what I have been doing. I walk between 6 and 8 miles a day for 2 hours at a time. At about mile 4 my feet begin to hurt, feeling like someone is shoving razor blades up through the bottom of my feet. My knee is in excruciating pain and barely supports my weight and yet somehow I go on to complete my full 6-8 miles. I have a problem, I know. I know I need to listen to my body and put a stop to my walking when the pain arrives but I don't and I don't know why. My psychiatrist says that it's because exercise is the only thing in my life that I feel I can control so that has become my sole focus.

I think she's right.

My brain's betraying me, I'm missing my dad and having PTSD about the day he died, I've always got an eagle eye on Thomas never sure when his illness is going to reclaim him and my everyday life is chaos. OF COURSE I NEED TO BE ABLE TO CONTROL SOMETHING. The problem is, I am "controlling myself" right into the ground. I am in constant physical and emotional pain and I am EXHAUSTED. I texted my mom the other day and I told her that I was just plain done with life. It's not that I'm suicidal,

I'm just DONE.

As such, and I bring us full circle here, my blog suffers a great deal as a result. It pains me because doing what I do here is my passion. I never want to lose sight of my mission here. I am proud of what I do and I love my community, all of you who support me. Managing it, though, is almost insurmountable right now.

So, as I have in the past, I will do it now, I am asking that you guys hang in here with me until I get a grip on my life. I don't know how I will or when it'll happen but I can promise you that this blog is never far from my mind and I intend to return in full glory sometime, hopefully sooner than later.
Finally, I want to thank you for taking the time today to read this. You guys are so much a part of my life and I feel like at least some of your care about the 360 degree view of it. We aren't just caregivers and loved ones for someone with schizophrenia, we are also just ourselves, often struggling, but always working to move forward. That is all I am trying to do right now.

Tuesday, February 17, 2015

How Do The Mentally Ill LOOK?

A few of you yesterday brought up a really good point about my story about the man with the purple beard. A few of you thought he might also have a mental illness. You are right and that is entirely possible and in some ways I did to him what many others do to our loved ones. I judged him. It's tough to say exactly what was wrong with him, if anything at all, but in a lot of ways it doesn't change my mind about the experience. Here's why.

I have been in many similar situations that included people from all walks of life. One such incident was with the doctor who does my occasional botox. I'll never forget telling him about Thomas and I'll never forget his reaction. THIS man is THE SWEETEST, FUNNIEST, KINDEST professional I have run into. He has done good work for myself and my family and he has always done it with a kind of love. That was why when I told him and he reacted in the WEIRDEST way and literally (again) said nothing and turned the conversation to something else that I was a bit shocked and bewildered. Even more interesting was how forthright he had been in the past about his own bipolar disorder and how accepting he was of me and how solicitous of me he's been when I have talked about my own illness. I was left, from that experience, wondering what it was about Thomas having schizophrenia that shut him up. He knew he was in safe company with myself and my mom and I don't think there was one thing wrong he could have said to me had he replied to my announcement. Even if he had been disparaging I know as sure as I sit here writing this, that he would have stopped to have a conversation about it with me had the whole thing been pursued. He wasn't my first time I was met with silence about this subject and he wasn't my last.

I think my issue with the man with the purple goatee was a part of the larger picture about society. I see it all the time and read about it all the time. People are just not receptive, for the most part, when the subject of mental illness comes up. People are scared. People run that piece of information through their minds and take less than a moment to decide for themselves the exact character of someone with a mental illness. It's a sad statement on society and it's what I work here to change.

Still, people just don't see mental illness in the way that a lot of you here do. We all know that this is a biological issue and it's no different than cancer or diabetes. The difference between us and someone with cancer is that our brains are affected and as such our behavior is different, often scary to those who don't understand. They hear the word "antipsychotic" when you talk about the medication your loved one is on and they hear the worst possible thing. Psychotic. Dear God that person gets psychotic and worse yet, people decide from that exactly how our loved ones behave never mind that we are often acting out in ways that are imperceptible to the average person. Thomas is often psychotic but he still gets told sometimes that he "looks fine" or "looks happy" and right then and there they decide that because he "looks" a certain way then he's fine. Take that same person, though, and tell them he's paranoid and believes the government is following him and suddenly he's a pariah and people turn away. How Thomas "looks" didn't change however people's perception of him does when they discover his mind works differently from theirs.

It's society as a whole that irks me. Unfortunately purple goatee man appeared to embody the very thing that upsets me about society. His reaction is indicative of a vast majority of people and therefore I "judged" him based on that. Who's to say that he does or doesn't also live with a mental illness? I can't say for sure and I won't try. I try my level best to live my life not labeling people's behaviors as that of someone with a mental illness. The way I understand it anyway is that there are a lot of us out there living with a mental illness and many of us you wouldn't know we deal with a private hell. I know there's not a soul around me that would say "oh, she's bipolar" because I have worked an entire lifetime learning to keep that fact to myself and to rein in any behaviors that might get me prejudged and shunned. To the world outside the walls of my home I am just an ordinary woman shopping in the grocery store or picking up takeout unless I choose to tell them my truth. Thomas, too, is the same way in his life. His beauty, though, lies in the fact that he believes he has nothing to hide and that he's a valuable human being just as he is and the fact that he has schizophrenia is just the same as the fact that he's not a fan of parmesan cheese or he that his first love is building Gundam models. He just is who he is, everyone else be damned.

We all live with something. We all feel inside that we are defined by a set of standards we set for ourselves. We all also are judged on many facets of our being. Someone is pretty. Someone is unattractive. Someone is rude. Someone changed my day with just a simple smile. The world is full of judgment and that will never change. My point, though, is that it would be lovely if we exhibited the behaviors of someone with a mental illness and people accepted us the same way they accept the lady with no hair, fresh out of chemotherapy. All I want is equality in this world but for the time being that will be a tall order when it comes to the mentally ill.

The great thing is, there are so many people out there working daily to change society's perception of mental illness. People talk openly about what they deal with and they demand to be heard and demand to be treated the same as everyone else walking this planet. I am one of those people, too, and as such, I expect someday to run into purple goatee man and be delighted to discover that instead of turning away from me he is instead willing to have a conversation about it and learn something new. The time will come, someday, I hope, but until then, I will take issue with those who run the other direction the minute a mental illness is mentioned.

Monday, February 16, 2015

The Guy With The Purple Goatee

I had an appointment to get my hair done last week and I was in a rather crowded salon. As I sat down, there was a man next to me just twirling around in his chair. I ignored him by looking absentmindedly at my phone but he would occasionally try to say something to me about whatever his mind produced in the moment. I tried a couple of times to entertain his interruptions but he'd make a comment, wait for me to answer and then say very little and go back to twirling around in his chair. Even my hairdresser was annoyed by this man who just couldn't keep out of our business.

At one point Thomas came up in my conversation with my hairstylist. We talk about him every time I see her because she has a sister with schizophrenia and she also cuts Thomas's hair. She has seen Thomas go through every stage of his illness and she has been there for me every step of the way. Recently she cut his hair and I had previously told her how well he was doing so when she saw him she was very excited about the changes she saw in him.

We talked a bit about what he's been dealing with lately and then the subject of his SSI came up. I explained to her that we had completed another step of it and were waiting for more information. This topic of discussion was of utmost importance to my middle aged seatmate with a purple goatee and a knack for getting into my personal business. He shared his story about disability (something to do with his back, I think) and then he asked THE QUESTION,

"What is wrong with your son?"

I paused. Yes, I'll admit that I paused for a minute because I had to size this guy up to see how my revelation about Thomas having schizophrenia would be received. Certainly we've all done this when it comes to revealing the truth about our loved ones with schizophrenia. You take a split second to decide whether or not this person will react the way you hope they will. My hairstylist stopped what she was doing and stood there (I found out later she was ready to come to my defense were I to falter) and I looked at this rather annoying man who couldn't seem to stay out of my business and I said,

"My son has schizophrenia."

Dead silence.

Followed by a blank look and a visible squirm in his chair.

Yes, mister, my son is a "schizo", I thought to myself.

That is what I saw in this man as I revealed to him Thomas's diagnosis. He was ready with his crass judgments but sized up the situation there with my hairstylist and myself burning holes in him with our stern expression and he squirmed again, said nothing, stared at us for a minute and then began twirling in his chair again. Not a word was spoken.

Of course. Smart move on his part I imagine. Either he knew what that word meant or he didn't but if he did I wouldn't have been surprised if he had something disparaging to say. Here was this man who couldn't seem to keep his mouth shut about my business talking about how I was glued to my phone among other things. In one fell swoop, however, I managed to shut the guy up. In that situation I didn't feel like this guy wanted to know one more thing about my son because "schizophrenia" is one scary sounding word and if common society reacts the way they do when the press prints that ill-fated word in conjunction with a recent murder then I imagine that man was having the same reaction. Certainly he had heard the word before and in my small town of gun toting, jacked up pickup driving, sometimes back woods, often very loudly expressive about those that don't necessarily fit into society, he was just another person like that who dug too deep a hole with two women with loved ones with schizophrenia. Both my hairstylist and I were on alert for any comment this guy might toss our direction but in the end he surprisingly took the smart way out and began twirling in his chair again.

That experience left quite an impression on me because I live in my bubble here where all of you know me and Thomas and you accept every facet of our lives (for the most part, I think). I write almost daily now about what it's like to live with schizophrenia and love someone with schizophrenia and I begin to see my world as a utopia of sorts where people understand that the word "schizophrenia" is not synonymous with the worst possible characterizations and that despite that scary word we are pretty much just like the rest of the world except for we have this nasty illness touch our lives daily in one form or another. Ultimately we want the same things everyone else wants. Ultimately we go through our days doing what everyone else does. Ultimately we are human beings pulled to the planet by gravity like everyone else and we, like everyone else, have a challenge in our lives that we try to overcome. Yes, despite that scary word, despite the media characterizations of the mentally ill, we are human beings.

Within minutes of my exchange with my seatmate, my hairstylist whisked him off to wash the purple dye out of his goatee. I sat there in the silence and I pondered how I could have handled the situation differently. Perhaps launching into a condensed explanation of the illness might have helped but later it was my hairstylist's contention that that man wasn't going to take even one more minute with me, the woman with a son with schizophrenia. He had made his decision not to pursue further education by his stunned expression and immediate twirl of his chair away from me.

There it was, on an unassuming Friday the 13th in 2 chairs side by side in a small town hair salon. Two people from different worlds collided and instead of finding enlightenment, one found the quickest way to escape and the other, me, learned yet again that my world is not that utopia I imagine it to be. In reality it is a world full of people with ready-at-hand judgments who are more willing to turn away then to learn about something and become someone who better understands a facet of society.

Schizophrenia is not scary. The word alone won't strike you down and the illness, in its best form, creates the strongest fighters you will ever know. As a loved one of someone with schizophrenia we all have the strength to educate and defend our loved ones if need be and as someone living with schizophrenia we live a day of challenges yet find amazing strength to get through a day, day after day, heroes of the finest kind because we not only fight our demons but we fight a society that would rather turn away then see us as human beings and get to know us and accept us in spite of the scary label attached to us in some medical record locked away in a doctor's filing cabinet.

Saturday, February 14, 2015

A Saturday With Tom--My Cognitive Deficits

 

Hello everyone, Tom here and welcome to my blog.

On Thursday, the day I have therapy, I was told that I suffer from something called cognitive deficits.
An example of how this affects me is that I have short term memory loss. An example I can give with that is that when I'm at work, my boss will give me a vocal list of tasks to do and I can do one of them but then I would have to come back to him/her and ask what else I have to do. For example, I could be told that I have to do one thing in one isle in the store, go to another part of the store and do something there and go to yet another part of the store and complete a task that is to be done there. But I would only be able to do one part of that and I would have to come back and ask what the next thing was that he/she wanted me to do.

Personally I don't like that I have to go back and ask what to do because it makes me feel like less of an intelligent person but I have accepted it and that it is now part of my life and that I have to live with it.

Well that's it for today's post, hope you enjoyed and as always, stay beautiful.

Coming Out Of His Shell (A Thank You To My Husband Dan and My Mom)

Yesterday was a big day in our family. My mom has sold the house that she and my dad lived in (too many sad memories to live there without him by her side) and she bought a fabulous new house with an open floor plan, high ceilings and it's only 3 years old. Having lived in a 1930's house for so long, moving to a nice new house is a good fresh start for her.

Yesterday was moving day. Dan and Thomas jumped in like pros and worked hard to get as many of my mom's things moved to the new house so she could start making it feel like home. The bigger pleasure of the day, though, was seeing the Thomas that emerged from it all. He spent the entire day with Dan--something I wasn't sure if it would go all that well--and the two of them worked together like the best team ever and after a slow start, Thomas found his strength and his groove and jumped in wholeheartedly into a very manly role of lifting heavy furniture and trusting his dad to help him balance the loads as they worked together with the big stuff.

One of the big moments came when the satellite TV installer came to do his work and Dan took Thomas with him out to meet the man. He first introduced himself and then he said,

"And I would like you to meet MY SON Thomas."

You know, yes, Thomas is his son. Dan has raised him practically his whole life but somehow something gets lost in all of the complications of life and I rarely get to see this kind of thing. It's a beautiful thing. Dan considers Thomas his son and nowhere was that more evident than yesterday. I'll admit I was hesitant to leave the two of them alone but when I showed up at the new house after hours away from them, I could see that they had become a team, true father and son. Even better after having talked with Dan yesterday about Thomas's cognitive limitations, Dan worked beautifully with them and was patient even when Thomas forgot to bring him a tool a couple of times because he got distracted moving other objects. For the first time in a long time I felt safe leaving the two of them alone and I found myself backing away from a lot of the moments they shared so that they could solidify their relationship.

My being away most of the day also helped my mom and Thomas bond as grandma and grandson. My mom is not a conventional grandma. She's goofy, she tells it like it is and in a good way her boundaries are pretty lax. All of this makes for a fun relationship between Thomas and his grandma. The two of them were inseparable during parts of the day and I caught the two of them sharing hug after hug, Thomas often comforting my mom in her tears and sadness about leaving the home behind she once lived in with her husband, my dad. Yesterday Thomas became the most expressive, most loving young man even coming to me several times for hugs. I had told him the other day that I had seen on the Today Show that studies have been done and people need something like 5 or 6 hugs a day that last 6-10 seconds in order to cement a bond and release whatever feel good hormone that is released in the brain. At one point Thomas came to me for a hug and he said,

"I'm trying to get my six hugs in for the day."

I held him so tightly willing my love to reach between our hearts and heal him as much as is possible.
Then at one point he came to me and he told me that he forgot to take his morning meds. I kept checking in with him all day to see where his mind was and finally he came to me and said that he had had a paranoid thought. He told me that this one he was going to write down and put in the buckets that Dr. K. made him. Remember the buckets? In one he is supposed to write on one side of a 3x5 card the "schizophrenic thought" and on the other side he's supposed to write a challenge for it. We joked together how the buckets could use a card since he had yet to put one in because he's been stable. We both felt bad that Dr. K. had lovingly built these buckets and this plan for Thomas and then Thomas got stable and the schizophrenic thoughts went away. I expect Thomas will carry his bucket to his next session and share the thought with Dr. K. The whole thing, though, was really rather cute because we both, strangely enough, were kind of happy that there was a schizophrenic thought to put in those empty buckets that reside on his bedroom floor. One thing was evident though is that if Thomas forgets his meds, this illness roars back to life in a matter of hours. Imagine if he went a day without them. Not something I care to entertain that much myself.

In the end, at the end of moving day, Thomas got a new computer chair, the one that had belonged to his grandpa and he got a TV for his room. He was very excited. My mom also slipped him $100 for all of his work and Thomas came home to me with plans already in place for the money.

Yesterday I watched my son blossom. He became talkative, expressive, funny, loving, helpful, strong both physically and mentally and he accomplished something he could be proud of. I loved that young man that came home to me last night and I am so happy that despite missing his meds and his illness sneaking back in a little bit, he had fun both with his dad as father and son and with my mom as goofy grandma and grandson.

Friday, February 13, 2015

Discussing Cognitive Symptoms Of ‪Schizophrenia

Yesterday was Thomas's therapy and Dr. K. had said in an email previously that he wanted to address Thomas's cognitive deficits with both of us in the room. I was happy that he was going to take my email seriously that I had written a couple days ago about treating those symptoms of Thomas's.

It began with a lesson in schizophrenia for Thomas. Dr. K. told Thomas about the positive, negative and now cognitive symptoms of schizophrenia and quizzed Thomas afterwards on each one. Even I was pulled into the quiz which cracked me up because when I was asked about negative symptoms I drew a complete blank. So much for all of my education on this illness. I am terrible at quizzes though. The minute someone verbally asks me how I feel, what I think, or if I know something I imagine I must look like a deer in headlights because that is what I feel like inside. Needless to say it went like this:

"uh...um...uh...(thinking to self--WHAT IS AN EXAMPLE OF A NEGATIVE SYMPTOM??????) um....flat affect?"

I passed the test but wanted to kick myself for not rattling off every last one of them. Quizzes, the bane of my existence.

Then we went on to cognitive symptoms. I watched Dr. K. as he broached this subject with Thomas and I could tell he was struggling. I have seen this in the past when he has had to tell Thomas something about the realities of his illness. It's like he doesn't want to hurt Thomas's feelings and he wants to protect him. It's admirable and I love that he cares so much but I really wanted to jump in there and just lay it all out on the table. I believe Thomas can handle the realities of his illness. I've had many talks with Thomas about his illness and every time it has gone fine. I suppose I do a little protecting myself but I'm his mom and I'm used to breaking bad news to him and his tender heart and he handles it well every time. I believe the approach you have to take to talking about this illness is to come from a place of caring but not be sad (or really have emotion at all) about what you have to say. In this case the facts are harsh but when delivered in a matter-of-fact way they are easier to take on.

Thomas received the information well and was relieved when he learned that his terrible short term memory issue and his processing of information issue is due to his illness. Finally, an explanation for why he's struggled so much. I had never had this particular conversation with Thomas because it has always just been what it is. The family takes it in stride for the most part and just works with the deficits. Like with making dinner the other night, I stood by his side every step of the way and gave directions one at a time. Had Thomas had to make the dinner on his own it would have been a disaster. I love him and I work with him and I always will. I can't change that he deals with this so the next best thing is teaching him how to live with it.

Then, in therapy, it was quiz time again. How did Thomas feel about what Dr. K. had just outlined about cognitive deficits? He really couldn't put anything into words so Dr. K. asked him if he felt relief and Thomas agreed that was how he felt. Then Dr. K. turned to me and asked me how I felt about these deficits. Uh oh. Quiz time. My answer was "sad" and I immediately wanted to reel that answer back in because Dr. K. shot me THE LOOK like what I said was the absolute worst answer I could have given. He paused for a minute and then started to ask me something and then stopped and paused again and finally said,

"I am not mom's therapist so I won't question her about that."

NO! If I answered the wrong way then please, question me. WHAT HAD I DONE WRONG? WAS BEING SAD OR VEBALIZING THAT I'M SAD THE WRONG THING?? I looked over at Thomas to see how he had received that and it didn't seem to really affect him so despite turning beat red and feeling like my face was on fire, I stuck with my answer. Sad. Wasn't it okay to feel sad that Thomas has to deal with these things???

All in all the therapy went rather rocky, I felt, because I sensed Dr. K. trying very hard to protect Thomas's feelings. I guess I was just coming from another school of thought on this one and that was to get the facts out there and then clean up any aftermath after the fact. As such, we left therapy and all I wanted to do was explain to Thomas why I am sad about him having these deficits. After being left with my flaming face and accompanying guilt I felt I had to hurry up and explain to Thomas why I said what I said. When we got in the car I told him this:

"Thomas, I am sad for two reasons. The first is that you were dealt such a rotten hand and ended up with schizophrenia. I think it is so unfair and you didn't deserve to have to deal with this. I don't want you to feel like you have to protect me in some way, though, because I expressed my sadness. It has nothing to do with you as a person, I just hate this illness. The second reason I am sad is because you have dealt with this for years and for all of those years I didn't know that you had an illness and I thought you were just being difficult when in fact you were truly struggling with trying to remember things, among other things. I am sad because I yelled at you, I took away the things you loved and I was angry because you didn't do things like remember to do your homework or ask your teacher something or remember to be home at a certain hour. I am sad because I wish I had known differently and had treated you better."

He seemed to receive that well and I promised him that I would continue to work with him like I have since I learned more about this illness and how it affects him. As for therapy, there will be a couple more sessions and a few questionnaires to fill out over the coming weeks about what Thomas deals with. We were told, after being handed our first, that the next one would be 200 questions long. Thomas expressed to me after therapy how excited he was to be filling out questionnaires and I've got to say I am with him on this one. I want to weed through everything and figure out what's going on and see what it is we can fix and what it is he will have to live with for the rest of his life.

Wednesday, February 11, 2015

Living At Home Forever

After posting what I did yesterday I had a conversation with my mom. She is down in Arizona with her boyfriend and has followed Thomas's progress from there. She didn't know about the latest issue with Thomas's cognitive deficits but based on everything else we had dealt with with Thomas over the last couple of years she had some thoughts.

First of all she said that she and her boyfriend, Leighton, had discussed taking Thomas on small adventures. Leighton owns a boat and we're situated on a river and reservoir and Leighton wants to take Thomas out on the boat this summer. He invited the whole family because he understands how Thomas might not want to do this alone, just him and Thomas. Both my mom and I thought this would be fun for him and I opted out of the trip because I thought it would be fun for him to do something without me in his shadow.

Then Leighton talked about taking Thomas fishing. Leighton is an avid fly fisherman and he and my mom made tentative plans to take Thomas beginning with a small trip to a local pond just to do it for fun. Last summer when my mom and Leighton went fly fishing Thomas expressed a great interest in it and I told my mom yesterday that that was something Thomas would love to do eventually. I did ask my mom, however, to explain to Leighton that he would have to be VERY patient with Thomas because I know learning to fly fish takes patience and skill. Leighton promised that everything he did with Thomas he would do with patience and caring.

I have written about Leighton before but let me say this. He's a pretty gruff, tell-it-like-it-is man. He gets right down to business, pulls no punches and gets the job done. On the surface he sounds like the very last person Thomas needs in his life but underneath all of that hard exterior is a man who is growing to care a great deal about Thomas and want to help him grow into a man. To Leighton's credit, he has no reason to want to do these things as he is not married to my mom and is not related to Thomas. He has every reason not to get involved but because he loves my mom he is also finding himself caring a great deal about Thomas. This man is quickly becoming a grandfather figure to Thomas and for that I couldn't be happier.

As I write what I'm about to write, I am glad that Dan, my husband, is out walking the dog. I write this in sort of a secret way because the truth of the matter is, he is just not the father figure that Thomas has deserved his whole life with. That's not to say that Dan isn't good to Thomas but fishing trips and boat rides are things a father would do and are the things Dan would never do. Because of that, Leighton stepping up in the way he says he wants to, makes me happy because finally Thomas may have a life with a man in it who wants to help Thomas experience the world in new ways. Every little thing that Leighton might do with Thomas is something more that will add to Thomas's life experiences. I am all for that because I want Thomas to LIVE while he can, while he's stable, while--as long as Leighton is patient with him--he can learn new skills. I want Thomas to have a life outside of his little bedroom and computer and tablet. He DESERVES that, I think even more so because he has schizophrenia and it makes his life so small.

Then my mom and I had "the talk". This is also written in "secret" without Dan around because what she and I talked about was this:

Both she and I don't see that Thomas will ever move away from home. That's not to say that he won't learn independence (like making hamburger helper for example) but the skills it takes to live on his own, the emotional strength, the clear thought processes, and the fact that he could forget his meds or become unstable at some point alone in an apartment, all of them are things Thomas doesn't have and both my mom and I aren't sure he ever will. That's not to say he won't improve, I don't want to leave you with the impression that I have given up, however I am a realist and definitely for the foreseeable future Thomas is going to stay right where he is. The secret here from my husband, though, is that will mean a marriage where we will never be alone just he and I. He would hate knowing he's been sentenced to that. I, personally, don't see it as a sentence, I see it as reality. It will be up to him and to the both of us to find ways to keep our marriage fresh by relying on my mom to care for Thomas while he and I go away on a vacation or just go out to dinner.

The last couple of days have been reality checks for me and I have begun shifting my view of things in a different direction. It's one I have thought I'd be headed to in the past but had let go because Thomas became stable but I see now, with the cognitive deficits and the other challenges Thomas faces, that it will be a long time before I'm packing boxes for Thomas to move from this house to one of his own.

Tuesday, February 10, 2015

When The Disappearance Of Positive Symptoms Reveals Cognitive Symptoms

I saw an article the other day and I posted it here about cognitive symptoms that are left when everyone stops focusing on the positive ones because they feel the person with schizophrenia is stable. At least that's what I took from the article. What it pointed out was that people need to pay attention to the other facet of schizophrenia, the debilitating effects of cognitive symptoms. After reading the article I passed it on to Dr. K. and asked him a few questions.

In therapy last week we had talked about how we would be able to start cutting Thomas's sessions back to once every two weeks and then eventually to once a month if he remains stable. I was totally on board with that but that was before this article and before I actually gave much thought to it seriously. Sure, the positive symptoms have lessened and it's so easy to call the game and say "he's stable" and "now we can move on" but the article pointed out types of cognitive symptoms and they all immediately reminded me of Thomas. This article took the symptoms very seriously and I felt like we needed to also. Dr. K. and I that is.

I wrote him a nice email and included the article and asked him if we were being to overzealous about minimizing sessions. I didn't accuse him of this but I did mention that many psychiatric providers focus so much on "curing" the positive symptoms that once they're gone therapy slows or ends. Dr. K. was never saying he wanted to end therapy but after this article I didn't think even cutting it back to once every 2 weeks was a smart idea. I'll admit that even I felt like Thomas could be set free from therapy now that the positive symptoms are gone but I have now changed my mind.
Thomas still struggles a great deal with everyday tasks. His working memory is terrible, he's afraid and/or anxious about doing things that most people could handle and he struggles with understanding directions. I was making dinner last night and as I was getting started Thomas walked into the kitchen. I told him,

"Hey! Why don't YOU make dinner since you're here! I'll teach you."

Let me first just say that the dinner was Hamburger Helper. With the exception of liquid ingredients, all of the rest of the ingredients are pre-measured. When it came time to measure the liquid ingredients the recipe called for 1 cup of milk and 2 1/4 cups of water. I got out a 4 cup measuring cup and knew beforehand that this would be a test for Thomas. Here's why.

I told him this would be a bit of a math problem for him to solve. I said he needed to first measure the one cup of milk into the measuring cup. He did that. Then I asked him what line he would have to go to to add the 2 and 1/4 cup of water. For the life of him he COULD NOT GRASP this concept. He saw the 1 cup of milk as one of the 2 1/4 cups so he said he should fill it to the 2 and 1/4 mark. After all, in his mind, the box was saying 2 1/4 cups water and he was taking it literally meaning the full amount (milk included) measured should equal 2 1/4 cups of liquid. It needed to be 3 1/4 total. I patiently worked with him on this explaining that there was already 1 cup of milk in there and it needed 2 1/4 cups more of water and finally after A LOT of consideration he got it. He filled it up and poured it in the pan. In the end, the dinner was a success in its preparation but poor Thomas made the whole meal shaking the entire time. He was TERRIFIED. When he was done I picked up the box and I showed it to him and I said,

"Now you see, this is a full meal and YOU prepared it. So if you are on your own this is one meal you could do all by yourself and by adding a salad or some fruit with it you have a complete and healthy meal."

He beamed from ear to ear.

Then last night an email from Dr. K. came in. A response to my email to him about Thomas's cognitive problems. As I read it I felt sick. I felt sick because once again I was caught up in my own reality and then the doctor came through and verbalized my worst fears. Here is what he said about Thomas's cognitive abilities:

"The cognitive symptoms that I am indicating are difficulty with understanding at times during the course of therapy what is being said. He is unable to process the information and develop a point of view regarding information. He has a slow processing speed, there is evidence of cognitive ambivalence and at times a marked delay in processing auditory information."

For me.....FOR ME that was VERY TOUGH to read. Here is the doctor who I like and trust telling me what I already know in the back of my mind but I deny it because it hurts too much to face. I do this with Thomas's illness in general. I can write here about how he has schizophrenia and I can utter the word to different people but when Dr. K. says he has schizophrenia, I am brought to my knees and feel the pain of the first time I found out he has schizophrenia. I have this duality in me and the best I can figure what is happening is that it is self-preservation. No mother, no loved one, wants this for their child. No one wants this to be true. No one wants to fully admit that life is forever changed for their loved one and there isn't one thing we can do about it.

So, I read that email and I curled up in a tight ball in my chair and I began to cry. I cried tears of grief wondering what happened to my boy, the cute lil guy who pushed his Thomas the Tank Engine trains around their wooden tracks. The little boy who jumped in the leaves in fall and held lemonade stands in the summer. I cried because I thought we were done, I thought he was stable, I thought we were going to get to move on and live a normal life when in fact we're still mired down in this illness, there is just something else about it we need to work on.

My heart, for my boy, broke again last night. How is this possible? More importantly, WHEN DOES IT END????

Monday, February 09, 2015

I Wonder If He Tells Me The Truth. I Wonder If He Knows

Yesterday was one of those rough days I had to fight through for myself because of my bipolar. It may be why I am writing what I am today, perhaps my mind was playing tricks on me.

Yesterday Thomas was in a perfectly good mood. He appeared to be just as good as he has been for a few weeks now. He had to work and I was late with dinner and he showed no signs of anxiety about that. He did pretty good except for a couple of moments that made me stop in my tracks and question if he was struggling again. I have to be very careful of my judgments of his behavior when I am off because I don't know how much of it is my own mind playing tricks on me.

I am wondering if he has some kind of voice back and I am wondering about his paranoia. In therapy he reported his paranoia was a 1 out of 10 which is good. The thing is, he has abandoned his computer for his tablet except to play one video game and it makes me wonder if something is going on with him and his computer. When asked, he said he just wanted to be on his tablet for a while. He's on his table now A LOT. This is one of those "disturbances in the force" that I have talked about before. It's like my mom radar is picking up on something but I can't put my finger on it.

Then last night he worked. He went to work pretty happy and joked when we pulled in the lot about all of the carts in the corrals that he was going to have to bring in. He even tried to justify each car's presence in the lot after I said it looked busy. He went on to tell me that 3 of the cars belong to employees and that some are for the drug store across the lot and the other cars are probably for the mall and the salon. He had it all figured out even though the bulk of the cars were parked in front of his store. I let it go. I thought it was weird how he was so detailed in explaining every car away from his store. As I dropped him off he told me he would be walking home from work and that I didn't need to come pick him up.

Good for him!

Right?

I thought so anyway.

After work he texted me and told me he was on his way home. I unlocked the front door and waited for him while I played games on my phone. When he walked in the door I could tell something wasn't right. I pinned it on being tired until I asked him if he was tired and he said,

"No not really."

I could see him struggling with something but I couldn't figure out what. I asked him if his walk had gone okay and his "yes" was very underwhelming. I was unconvinced that it had been okay. SOMETHING was bothering him. I just don't know what. I hugged him and held him a long time and felt a lump in my throat but without him confirming anything was wrong, I was left to my mom radar which, of course, yielded nothing when I asked him.

This brings me to the questions above. I wonder, first, if he tells me the truth. He knows how excited I am about his stability and I wonder if he's protecting me from times where he's not doing so well because he doesn't want to burst my happy bubble. The other question I asked is, I wonder if he even knows there is something wrong. Oftentimes in the past he has been struggling with stuff and I picked up on it long before he was truly conscious of it.

Who's to say really. When he is asked he says he's fine so I'm going to take it at face value but in the back of my mind I am going to keep an eye on him for a while.

Saturday, February 07, 2015

Today Is A New Day

I sit here today writing after a few weeks of feeling unable to accomplish one single thing that I wanted to. My brain was so wired and unable to settle down enough to function and do things for this page. I have hated it because this page is my pride and joy and I love all of you guys and I don't want to let you down. There needs to be ACTION on this page and INFORMATION being shared and unfortunately for a while there I had a block in my way, more like a brick wall, making it so that this page was becoming lackluster.

Then yesterday I came upstairs from 2 hours on the treadmill (my exercise is the one thing I'm able to keep up despite my rampant bipolar illness) and I sat down on the edge of my chair in the living room like I have done so many times in the last weeks and I once again stared at the blank TV screen. My mind was filled with a jumble of things but suddenly I burst into tears and cried and cried. The overwhelming feeling I had was that I felt so alone, so lonely. There I sat in that empty room, Thomas just having left to go to his room and play computer games, and my mom is 2 thousand miles away (she's my best friend) and I knew my sister was struggling through similar issues as mine as far as bipolar goes and I just felt like I was so alone in this world. I have to say, feeling lonely, feeling alone, is probably one of the worst feelings in the world. You know that there are people out there surrounded by loved ones or friends or coworkers and there you sit.

Alone.

I didn't want Thomas to catch me crying so I dried my tears after a while and I sat there trying to get myself together. Finding it impossible to do anything still, I wrapped myself in a blanket and went to sleep. I was quitting the world for a day and hiding out in unconsciousness.

When I woke up my very first thought was of this page and of Twitter. I had worked for weeks going through Twitter to find you guys articles to read and all of that had slammed to a halt and I ran out of articles, unable to tie my brain down to my tablet and go through Twitter. I was awake though and I was ready to go. My brain was not betraying me, the loneliness was gone and I told myself to hurry up and take advantage of the light in my brain and I began to look through Twitter for articles and went so far as to begin new plans for this blog.

I awoke today clear headed and excited about this blog. My hope is that I can hang on to this wonderful feeling and spend the day making plans for the next few weeks on this blog. I want there to be content that is useful for you all and that will get you involved.

So, today I skip the exercise, I keep the house warm and I recommit to this page. You probably didn't notice anything different but it was glaringly obvious to me that so much was missing and the me without bipolar episodes can and will breathe new life into this page.

I hope you all have a good day today! I'll be here working.

Happily.

((Hugs))

Friday, February 06, 2015

Friday's With Tom--My Train Club Meeting...Getting Social


Hi guys, Tom here and welcome to my blog.

 
A while ago me and my therapist were throwing around ideas as to what I should do to become more social since I'm doing better. We came up with a few ideas and one of them was joining the local model train club. When we came up with the idea I was excited.

 
When I was younger I loved model trains. I went as far as to save tons of money just to buy model trains and tracks that I would set up in the basement and watch them go around the track hundreds of times.

 
The meeting was held at the local veteran's home so my mom drove me there and I went in alone feeling excited. Though when I talked to the nurses, asking where the train club was, I felt a little stupid. I am in my 20's and I'm asking where a model train club is. When I got no legitimate answer from the nurses I turned around and went back to the front of the veteran's home and called my mom asking her to come home. However, she suggested that I call one of the club leaders and ask where the location was. I was a little reluctant but eventually I said, “okay” and she gave me the number of the club leader's cell phone.

 
After getting the number I called the club leader and he helped me find the place of the meeting. Turns out it was within a short walking distance of the second nurse I talked to. As I entered I still had that stupid feeling but when I walked in I saw a man about 2 or 3 years older than me I felt a little less stupid. “Oh good I'm not alone.” I said to myself. Everyone else there was well into their 50's or 60's so I felt a little out of place but they were nice and I slowly felt more at home.

 
The meeting went on for about an hour and thirty minutes and the club leader announced that they had a new member, me. He asked me to introduce myself and what scale of model train I had. When he asked for me to speak I had an anxiety level of about 9 out of 10, I was really scared. However I told myself that I could power through it and that these men were of same interest. I said my name and the scale of train that I had (HO by the way) and everyone said “welcome.”

 
After that we all went home and I felt proud. I made some new friends and I powered through some anxiety and shyness that night.

 
Well that's it for today's blog. Have a good rest of your day and as always, stay beautiful.

Upcoming Friday's With Tom

Since Thomas was sailing through yesterday I encouraged him to get his blog post done early. As such, I will be posting it at 9 a.m. this morning. I just wanted to let you guys know that as we discussed what he should write about he kept feeling like the suggestions that you all had given him and that I was giving him, were ones he couldn't write much about. I tried to help him develop a post but he was stuck at using short sentences and there wasn't much to the post. I know we all want Thomas to just be Thomas but I also have a vested interest in re-teaching him that he is a great story teller (he used to write detailed stories about Gundam's for example) and I want him to find the confidence in himself again to tell a story and understand that what he has to say will be received well and appreciated. His confidence about his writing skills is at an all-time low and since he is becoming stable I would like for him to reenergize those skills of his that he has lost due to schizophrenia and feel like he's getting a piece of his old self back.

After listening to him talk in therapy yesterday and describe his experience at the train club meeting on Tuesday I thought that what he had to say has a lot of information in it that would be useful to you all. That experience for him was a true test of his resolve and I only found out later in therapy what TRULY happened during that hour and a half he was there. I told his story from my point of view and how I saw "the boy I used to know" but in all fairness, in the end, it was his story to tell more than it was mine.

Yesterday afternoon we sat together and made an outline of what he could write about and I laid it out in chronological order for him so that he could just follow that but write what he felt and experienced. My hand was in it only in that I helped him develop the story. It was him that told it and I hope that you all will like it and recognize the change in his descriptions of his experience as compared to past posts and I hope that you will like and recognize that he really put his story telling skills to work. My hope is that one day he will be able to tell his stories as if he is writing his life story and that by doing so he'll reach even more people with his candidness.

As we talked yesterday I could feel his mental muscles stretching and I know it took quite a bit for him to reset his mind to work like a writer's but I think the end result was pretty awesome.

Alright, I'll stop being "mom" now and let his work speak for itself. I really just wanted to share this all for you so you could understand just exactly what he put into this post.

Oh yeah, and one other thing, he chose the picture he used and he designed the writing on it himself. He was VERY EXCITED to be able to do this. His touch was on every inch of this post and I think you will like it.

Watch for it at 9 a.m. PST.

Thursday, February 05, 2015

The Boy I Used To Know

During a previous therapy session that I wasn't invited in to Thomas and Dr. K. talked about Thomas picking up a hobby or some way to socialize. Thomas mentioned to me that they had talked about him joining a model train club. When I went in to his last therapy session Dr. K. had pulled up the train club's website and announced that their once-a-month meeting just happened to be falling on the following Tuesday. That was 2 days ago.

I couldn't read Thomas on this announcement. I couldn't tell if he was anxious about it or if he really truly wanted to go. He said he did but he said it so flatly. When we got in the car he did say again, when I asked him, that he did want to go. I told him to look the info up on the website for himself and make the necessary call to find out when and where the meeting takes place.

First let me say this. This young man who gets anxious making any phone calls managed to make this one with little to no anxiety. He didn't hide from me in his room like he usually does to do things like this and he wrote down all of the information he needed. All of that was new territory for him. I was very proud of him.

Then Tuesday arrived and all day long he was unfazed by the upcoming meeting. There was no anticipation anxiety and he even didn't panic when I was late getting him his dinner. As I drove him up to the meeting in the Veteran's Home we talked about the meeting and finding the room and who he would meet and he acted like a pro.

He was the boy I used to know.

You see, Thomas, before schizophrenia took him away from me, could make friends like it was nothing. He went into every social event completely confident and always came away with 2 or 3 friends. I always admired his ability to do that because I have a touch of social anxiety myself--I wished all of the time that I could be like him. So on Tuesday night as he got out of the car to go to the meeting I watched the boy I used to know go in.

When I got home, within 5 minutes, I got a call from him. He told me that the nurses told him that there wasn't supposed to be a meeting there and so he didn't know what to do. I told him I would look up the phone numbers of the president of the club and give them to him so he could call them and find out where they were. There were no protests on his part begging me to just come get him and take him home. Instead he said, "let me get a piece of paper and pen to write the number down". I gave him the numbers and we hung up.

I didn't hear from him again.

The meeting lasted almost 2 hours and I got a call around 9 that he was ready to come home. He was a little subdued when he got in the car but I soon discovered it was because they had mostly sat around and talked about how they have no money to run the club. The entire meeting had been about what to do and where to hold future meetings. It was a bit of a disappointment for Thomas as I am sure he would have rather talked about and maybe even played with some trains. I asked him if he had introduced himself and he said that he had and that it had been a little scary. It turns out that they made him stand up in front of everyone and introduce himself and tell a little about himself and even talk about what model train(s) he has. He told me he had to take a guess at it because it had been a long time since he'd even seen his trains. The thing was, even in his nervousness, he NAILED the type of train he owns and after his introduction he was welcomed into the group officially.

As I drove home with him, in my head, I shook my head in happy disbelief. The kid I had missed for so long, the kid who fit into every situation, was sitting right there beside me in the car and I realized how VERY DESPERATELY I HAD MISSED HIM. In fact, I had just about forgotten he had ever existed because the weight of schizophrenia had colored my world so dark that I couldn't even see back into the past where some things were concerned.

In the end he really did like the meeting and he told me he would go back. I couldn't be happier. My boy, the boy I used to know, is back.

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