Tuesday, September 30, 2014

Meds Day

Today we go and see Dr. N. I think it's been almost 3 weeks and a lot has happened during that time. I know with the whole akathesia thing I really wanted to talk to him about that but didn't even attempt to contact him since it's so hard to reach him. He is a professor at a local college and his psychiatric practice he does on the side so he's only reachable by email which means even if I call in to his office they have to contact him by email and in my experience he doesn't get back right away. Even the secretary told me that if he doesn't answer his emails that they'll hand his cases over to another psychiatrist in the practice. This makes me uneasy for some reason but you can be sure if there is anything serious going on with Thomas I would take anyone's advice from the practice but would prefer Dr. N. I am not going to put Dr. N. down because he can only be reached that way because I like the guy. He obviously cares about Thomas and I feel like, for the most part, he has handled Thomas's case pretty decently. So, at any rate, we will see him today.

Thomas's akathesia has gotten better though. That's good but it makes me wonder if the Cymbalta was the culprit. The pharmacist told me that akathesia is not a side effect of Cymbalta and she figured to was a combination of all of his meds in concert with the Cymbalta. I can't be sure but since it was isolated to 4 or 5 days and it accompanied the whole not showering thing and the mood changes and the haggard look on Thomas's face, I'm starting to wonder if it's more schizophrenia than meds. Thomas has had akathesia before that I am positive came as a symptom of schizophrenia and that 4 weeks was hell for him because he became like a caged animal and was on a hair trigger with his anger. I am curious to see what Dr. N. has to say about it.

Another thing that has been happening on a regular basis is that Thomas now walks a little over a mile with me just about every day. I am on a "diet" (I hate that word) and any exercise I can get in, I try to get it wherever I can so admittedly I "use" Thomas as an excuse to get another mile in to my exercise regimen. Even better than racking up miles for my own benefit is that Thomas and I have gotten some quality time. Our walks take about 20 minutes so we are each other's captive audience for that time. I try to engage him in all sorts of conversation and surprisingly most times I get something out of him. We have talked about everything from how he won a particular tank in his favorite computer game to what we think waits for us in the afterlife. I know that sounds a bit odd but our walk circumvents our local cemetery and the other day there were 2 huge funerals going on so I took the opportunity to talk to Thomas about death and life after death. Since he just lost his grandpa I have wondered what he thinks. It is a post for another day but he has some pretty interesting ideas about what waits for him after he dies.

So, anyway, today is our long drive up to see Dr. N. I will have more information tomorrow about what he thinks is going on with Thomas. I am really curious what he sees and what he'll suggest as a result. One thing's for sure, Thomas wants to stay on Cymbalta so I don't think that'll go anywhere.

Monday, September 29, 2014

A Letter To My Neighbor

Dear Neighbor,

I am writing this letter because we go through our lives passing each other as we get in our cars, mow our lawns or as we're getting home from work. Sometimes we say hi but most times we just ignore each other. I often wonder why we do but I have a guess.

Years ago your son was struggling with (as best as I can understand) a serious case of ADHD and maybe Oppositional Defiant Disorder. He was wreaking havoc in the neighborhood and stealing people's things and injuring his peers. The noise he made at 1 a.m. when I was trying to sleep made me mad and I wanted more than anything to go outside in my nightgown and robe and rip that bat from his hands. But time has passed and your son has mellowed and things seemed to have settled down. I know for years my not speaking to you had to do with your son's behavior and how it interrupted my life. I felt like if I opened my mouth that I'd promptly put my foot in it saying something that shouldn't be said. I kept my silence and life moved on and now all we do is pass in the night like two ships on the horizon.

Things have changed though. My silence as I pass you is no longer about you and your son. It's about me and mine. While my son hasn't torn up the neighborhood or kept you awake till all hours of the night, he struggles with demons that, like you at the time when your son was struggling, I don't know what to do with. Often we pass and one of two things happens. Either I want to stop you and tell you what is going on or I want to keep this secret hidden behind our closed doors and frosted window that is common with your house. I often worry about what you would say about my son if you knew he had schizophrenia and I wonder, because you are connected in the community by a large family and business dealings, if you would find my truth sensationalistic and talk to everyone, now making my son the pariah.

You see, there is this thing called stigma. I know you know it because of what you went through with your son but it is something that stops me from engaging with you. There are so many misnomers about schizophrenia and I know that the vast majority of people already have their opinions about this illness that affects my son and my family. They think they know it well because they've read it in the paper or seen stories on the evening news. I fear, like the rest of the world, you think you know too. But you don't. Not at all.

My son lives with this illness every day of his life. At his worst he believes our government is tracking him via satellites and following him when he goes outside. At his worst he is anxious beyond measure, he can't stay at work because of the security cameras in the store and he hears a voice that constantly comments on
every.
little.
thing.
he does. He also hears a woman screaming that keeps him up, terrified that she is being killed and he is too frozen to do anything about it. At his worst he is depressed, flat, expressionless and emotionless. There is little joy in life and daily tasks like showering are impossible to accomplish. At his worst he is wracked with unbearable side effects from the 6 medications he takes and each day he sleeps 14 hours because the combination of meds sedates him so much that he can't lift his head from the pillow.

At his best, though, he is my light. He smiles at everything, sometimes for no reason, he cracks jokes, he participates in family chores, he gets his hair cut when it gets too long and he works hard at his job. At his best he takes a shower regularly, he wakes refreshed and sometimes remembering his dreams like that he stood in front of a vending machine that gave out GIANT coins that made him happy. At his best he loves his life and he sees promise for his future.

Neighbor, he is a treasure. He is my reason to be and he is not that article you just read or that TV news report you just sat down to watch. He is 19 (almost 20) and he has been struck down in the prime of his life by schizophrenia. His light flickers and sometimes goes out but he is beautiful whether or not he glows warm.

Neighbor, I wish I could tell you all of this. I wish I didn't feel like you would turn it into neighborhood, or worse, town-wide gossip. I wish I could say hi to you, stop to see how your day is going and maybe share with you how mine is going, be it good because today my son showered today or bad because he was haunted by too many voices yesterday. Neighbor, I wish we could talk, be friends and be free. The truth is, though, that I am suffocated by stigma with it's grip on my wrist pulling me away from getting close to you.

Neighbor, in the end, we will remain as we are, people passing each other between everyday tasks. I wish things were different but they aren't. I am fighting a valiant fight though, working to educate as many people as I can about this illness and someday...someday I will stop you on the other side of your rose garden and I will say hello and without fear I will be able to say, when you ask me how I am, that I am tired today from having been awake all night worrying about my boy and you will nod your head and perhaps relate to me in some way. The time will come, I know it will, but for now we disappear behind closed doors, turn on our porch lights and go to bed unaware of what the truth is behind those doors.

Sunday, September 28, 2014

On The Battlefield, Almost Lost The War

Again I don't normally blog on Sunday's but since so many of you have been following Thomas's struggles lately, I thought I'd better give you an update on the showering thing.

I went for my usual morning walk yesterday and I left a note for Thomas like I always do. In it, this time, I also wrote:

"And don't forget that today is a shower day, especially since you work tonight."

I thought the way I put it would prompt him to shower.

It didn't.

I came back from my walk and a rather angry Thomas came out of his room and said,

"You're not going to like what I'm about to say."

Uh oh. Now what? I thought to myself.

"With narrowed eyes he said,

"I'm still only going to shower every 4 days."

I closed my eyes shook my head and said,

"Okay, it's your life. I can't control what you do."

And I walked away fuming.

It was hard to decide what I was more mad at. His attitude? Or the fact that he wasn't going to change his patterns. I let it go though and he went to take the dog for a walk. Then the light bulb went off. We had just watched one of his favorite shows the other night called "The Big Bang Theory" and something happened on the show and I thought it was the PERFECT illustration I needed to get my point across to Thomas about how the world views him. I asked him to come talk to me and I said this,

"Remember 'Big Bang Theory' the other night and how Sheldon was stuck in the train station and he had no pants on and his hair was sticking up and he looked like hell? Remember how everyone he approached looked at him with frightened eyes, gathered all of their things, and ran away from him, afraid, thinking he was crazy? Remember how he looked? Well Thomas, THAT is how people look at you when you haven't showered and your hair is greasy and it's sticking up everywhere. They may not run away like in the show but they will look at you like you have a problem. They aren't going to want anything to do with you."

Perhaps some of you might think this is harsh but after him angrily informing me that he wasn't going to honor our deal, I was mad and I needed something to get my point across to him and that show was the perfect way. Of course it was received with silence so I rolled my eyes and went back to what I was doing.

Then this morning happened. Thomas had an early meeting at work and Dan woke up and while he was brushing his teeth and washing his face, Thomas came out of his room. Dan asked him to give him a chance to finish up and afterwards Thomas disappeared into the bathroom. After a while Dan began to wonder what was taking him so long in the bathroom and he went and stood outside the bathroom to ask if he was okay and lo and behold, Thomas was showering!!!

What the heck????

I'm not sure what's in play here be it the conversation we had yesterday or the fact that he's going to an important meeting this morning but whatever it is, I will count it as a small victory for now. I don't know what'll happen next but I'm going to hope that this will stick. He sees Dr. N. on Tuesday and you just know he's going to shower for that because God forbid the doctors see him at his worst, which he spends obviously most of his days, but I will be bringing it up to Dr. N. nonetheless.

So, there it is. My sly little unassuming note didn't work but maybe my story did or even if it's just that he knew he had an important meeting at work this morning and wanted to look his best for it, all of it is good and for now I can step off the battlefield and wait for what comes next.

I'm still in shock.

Thursday, September 25, 2014

Just As Lost As My Boy

This will be another difficult post to write. My day yesterday was one of the worst in a long time.

It began with my husband, Dan, getting on Thomas about showering. I love my husband but he lacks tact, compassion and the love of a true dad for Thomas. It is one of my biggest heartbreaks of Thomas's life. I watched though as he told Thomas how dirty he was and how he needed to shower and I watched as Thomas got angry and shut down. SLAM!! I can't say I blame him because I did the same thing. He handled it poorly with Thomas and I wasn't surprised Thomas ignored what Dan asked.

Then I had to take Thomas to the dentist. He was so dirty. I was a little embarrassed, more for him than me, that he was going to sit in a hygienist's chair and they were going to have to work on him as dirty and smelly as he was. Thomas didn't care or didn't seem to. After the appointment it was about a 15 minute drive home and I thought I'd take the opportunity to have a calm, gentle talk with Thomas about showering. Never has getting angry or yelling or giving ultimatums ever worked to get Thomas to do anything and I wasn't about to do that now. I explained to him in the most gentle way I could about how he is viewed by society. I told him that he didn't smell very good because of the grease in his hair and I tried with all of my heart to bargain with him about showering. You see, we had made a deal a while back that he would shower every other day and if he forgot he said he wanted me to gently remind him to do it. We had a deal. Somewhere along the way that went by the wayside and now here we are. Obviously I said too much because he shut down on me and the conversation ended. He jumped out of the car when we got home and went straight to his room. I sat down in my chair and I started to cry. I had failed and I was out of ideas to help him.

Then I posted here about showering and you all shared your stories with me and I sat and cried as I read each one because I realized how we are all in this together in one way or another. I cried because there were so many of you telling your stories like mine and I HATED this illness for doing that to us and to our loved ones with schizophrenia. It is unfair. Plain and simple.

After reading your thoughts I went out to my husband who was in the garage at the back of our property which sits on an alley and I explained to him about what you all had said. I tried to reason with him and show him that this issue is not exclusive to Thomas. I tried, for the thousandth time to explain schizophrenia to him and explain the negative symptoms and then he stopped me and unleashed. Where all of the neighbors could hear he told me that he felt Thomas was disrespecting him by not taking a shower. He said Thomas runs this house and we just live in it under his rules. Let me interject here that that is not the case. Our lives as parents are not affected by any implied rules set by Thomas. Thomas sits in his room mostly and his worst crime is that he forgets to do his chores.

Dan went on to say that he was going to disconnect Thomas's internet access as a way to control his "disrespectful" behavior and I told him he couldn't do that because Thomas paid for that. Somehow the conversation went in to how Thomas lives here for free and doesn't pay anything to which I reminded him that Thomas pays his phone bill and internet and that he doesn't have money to pay for anything else. I asked him what he thought Thomas was going to do if he lost his internet access. I told him that then Thomas would just watch TV and THAT would make him mad. It went on like this for 10 minutes. His final blow to me and by association to Thomas was that if Thomas was dirty, he wouldn't go anywhere with us because he was too embarrassed to be seen with Thomas. He said he didn't feel he needed to be seen with Thomas when he looked like he did. I told him that was fine and that I didn't want him with us anymore, that he could just live his life and Thomas and I would live ours. I was done arguing and trying to explain why Thomas is the way he is so I walked away.

I came inside and again I sat down in my chair and I cried. I didn't know what to do. Thomas wasn't budging and God knows Dan wasn't going to and I was stuck in the middle of it all completely out of solutions. I sat and wrote Dr. K. an email and told him about Thomas not showering and filled him in on some things that had taken place lately and sent that off and felt a little better. Dan left to run some errands and I decided to go in and talk to Thomas again.

I told him that his dad felt that him not showering was a sign of disrespect. I told him that they were always going to butt heads because they both saw things their own ways. I told him that he should prepare himself for certain conflict because this issue wasn't going to go away. He said nothing. Then I tried another route to try to find out WHY he doesn't shower. So many of you said your loved ones have reasons so certainly Thomas must have his.

He outlined that showering causes him to itch (which I have been witness to for at least a year) and he wanted to avoid that. He said he didn't feel like he needed to shower because he doesn't really go anywhere and he doesn't do anything that makes him dirty. He said he didn't care what people thought of him because after the bullying he endured in junior high, he had made the decision to not care about people's opinions anymore. All fair reasons, all well-entrenched, all immovable.

I talked with him a little more and he just looked at me with these vacant eyes. I don't know if any of you know this look in your loved one's eyes but as we talked, during the entire conversation, he was looking right at me but he was not there. I don't even know how that's possible! There was no emotion, no expression, just emptiness. I slowly realized that my worst fears about him disappearing had come true. It may have been the talk but I think it is bigger than that. Something is missing and looking at him, I can't find anything to hang on to. There are no reactions, there is nothing. I told him I loved him and he just looked at me with THOSE EYES and he told me he loved me too. Then the flood overtook me. I realized he was gone. He's been gone a long time. Long before this whole shower thing. Then I said to him,

"I wish you could see you like I see you."

and tears welled in my eyes and spilled out of me. As his mom, as the one that gave him life, I realized he doesn't see himself. He doesn't know how sick he is, he doesn't think there is anything wrong,

He

Is

Gone.

I apologized to him for my tears and he seemed to soften a little and he stood up to hug me.

I held onto him for DEAR LIFE and just cried. I tried so hard to keep from sobbing, I held my breath but I couldn't stop the tears. After everything the last few days, after the day we had just had, after seeing that there is nothing behind those beautiful brown eyes of his, I just couldn't stop the tears. I squeezed him tight, stepped way, wiped the tears away and made him promise me that he wouldn't keep things from me just because I was crying right then. I know he protects me from a lot of his illness and I hated myself for crying because I knew he would feel responsible. I told him again that I loved him and I left his room.

Alone again in the living room I cried. I couldn't hold back the sobs and I put my hand over my mouth and wrapped myself with my other arm and squeezed. All of it, all of it from the first time I saw something wasn't right with him, to his first psychotic break, to his first hospitalization, to his second hospitalization and diagnosis of acute paranoid schizophrenia, to all the drugs he's been on, to all of the similar conversations that we had, to all of the times I had seen nothing behind those eyes, ALL OF IT came crashing in and I drowned in my sorrow and grief.

How did it come to this? Why did it come to this? Will it ever end?

So, today I sit here and I write and I cry fresh tears and I shake my head in disbelief. I feel just as lost as my boy but in my world there is life but there is also a grief beyond measure.

Wednesday, September 24, 2014

Someone Tell Me Where He Is

Thomas lately has looked so....haggard. Worn out, tired, unkempt, mellow and a little bit lost. I don't like seeing him this way. There has been this slow decline of his spirit and what is chipping away at him I'm still not sure what it is. Sure, he smiles, he carries on a conversation though they're most often short and sweet but there is just something missing. I miss him and each day he changes I miss him even more.

You should have seen him yesterday. We were headed out for his weekly blood tests for the clozaril and he emerged from his room with his hair sticking up in 3 spots on his head and it was greasy and full of dandruff and as I said, there was that haggard thing too. Bless his heart when I asked about the hair that was sticking up he asked me to fix it. It's been a long time since he's let me care for him in such a tender way.

I sprayed his hair with water and tried to press down the parts sticking up and was rushing it because I didn't want to make him uncomfortable with what I felt was an almost mother/son intimate moment. We hug, we hold hands in the car, but I never really get a chance to touch him otherwise. I wasn't having much luck with pressing his hair down and he asked me if he should get me his brush and I said yes. When he came back I asked him if it would be okay if I used my hairdryer on him and he agreed. I stood there with him, my boy who towers above me and with warm air I styled his greasy, dirty hair and tried to make it look presentable. He just stood there sweetly and silently while I did this. In that moment I loved him more than I have ever loved him. This child of mine, this struggling young man, needed me to groom him and he sweetly allowed it. I cannot tell you what those moments with him meant to me. I often wish that I could hold him in my arms again like I did when he was young and look into his eyes and make all of the promises I could that things would be okay or tickle him and see the sparkle in his eyes as he squirmed in my arms. Those days are gone though until those moments with him yesterday.

We got in the car and headed over to the lab and he got out and went in while I waited in the car. When he came back he had a blue tape/arm band on where they had taken his blood and he looked at me with his tired, defeated face. He asked me if I wanted to go to his work and see the new refrigerator section that had just been put in and again I felt blessed to be invited to his place of work and be brought in at his side where all of his co-workers would see. I know that young men usually don't want to be seen with their moms so I felt lucky to be invited. When we got out of the car to go inside I followed behind him for a minute and watched him walk, arms straight at his side, not swinging in movement with his body, his clothes were tired and old and his hair was greasy and flaky and he had that bright blue arm band on. He thought nothing of going into his place of employment looking like that. It is those times that I know he is not well or thinking clearly.

We toured the store and I was happy as a young employee shouted across the store to Thomas and said hello. It made me happy that there are people at his job that seem to like him. He needs that. Frankly, I needed to see that. I worry so much about him being at work since he has that chronic depression about it but now I feel a little better because I know that he's liked. Now, it's not that he's ever been unlikable, in fact, that is the one thing he has always had going for him. Where I would flounder in a similar social situation, he walks in with ease and confidence and somehow finds a way to belong. I have always been in awe of his ability to do that. And everyone he has met that has talked to me about him later on, they have said how much they like him and how polite he is. He is a good kid but he is lost somewhere I can't seem to retrieve him from.

I stood in front of the refrigerator section and asked him all about it and joked with him and tried to engage him and he seemed to click in for a minute. Then it was time to go. Once again I followed my boy out of the store and we got in the car.

Someone please, tell me where my boy is. I see him in pieces and parts here and there but a lot of him is gone somewhere else. I miss him more than I have ever missed anyone in my life. Yesterday, though, I was blessed beyond words. We had our moment with a spray bottle, a brush and a hairdryer and when I finished up doing his hair I ran my hand down his back and rubbed it and asked for a hug that he gave me with such sweetness and that moment I will never forget.

I love that boy.

More than life itself.

Tuesday, September 23, 2014

We All Have A Story

(Picture Credit: imgsoup.com)

In my travels through the blogosphere, Twitter, Facebook and the media I have met or read about so many people in our situation. There are so many of us out there struggling to find help and answers. We all have run the gamut of emotions, experienced things nobody would ever wish on their worst enemy and we come out of these battles each of us with our own narrative about what we have seen and heard. I am touched by each and every one of you and your stories of struggles and triumphs and I find endless kindred spirits in each of you.

I am writing a story for Treatment Before Tragedy and I just got another edit back from my editor Asra Nomani. She has been amazing at helping me tell mine and Thomas's story. I sat outside in the early morning air this morning and read what she thought might be a better version of what I am trying to relay to my audience and between her and I, we have come up with something so beautiful and when it comes time for it to be published I will feel beyond honored that I have gotten this opportunity to write for #Tb4T and tell my story which really is all of our stories.


I just want you to know that I do this, this blog, that article, the interviews, for all of you. My "mission" has never been for personal gain as that would be so selfish and contrary to my goals in educating people about schizophrenia and what it's like to be a caregiver. Instead my mission has been to give a voice to each and every one of you out there in the shadows who are fearful of telling your stories because, at it's worst, you can't even let your family and friends know what you struggle with and understandably being so public, as I have been here and around the internet, is scary and fraught with unknown consequences for speaking out about this highly stigmatized form of mental illness.

That's not to say that I am not scared just like you. Some days I am utterly terrified as it dawns on me that my readership is growing and much of my audience I do not know. What they think, how they judge, what actions they take in their own lives with people they know who have mental illness based on what I say is a big unknown and my only wish is that it is all done for the good of the cause.

Today, on this day that I got back my edits and re-read my story for the hundredth time, I want most to say thank you to all of you who give me the strength to do what I am doing. To those of you who speak up publicly almost daily on my page sharing your own stories, I am thankful for your tangible presence and ability to relate to the stories I tell. You give me the most strength because you aren't unlike me in that you are willing to talk and more importantly take similar risks to mine. I am honored to have you by my side.

To those of you who find yourselves hidden, trapped behind doors and walls and shadows but who sometimes private message me and tell me your stories and that you understand mine, you all are my quiet strength. Often it is your message to me that changes my day for the better, that makes me cry tears of shared grief with you and that give me the fuel I need to continue to light the fire that is my ability to continue to speak out like I do for all of you.

We all have our stories. We live them each and every day. We yearn to share them. We pray for support, better healthcare, and good days for our loved ones struggling with schizophrenia. Just know this. You are not alone. I am here doing what I do and all around me are all of you and others like you that are out there in the world feeling desperately alone. You are not alone and if you feel that you are, take comfort in the fact that I am making it my life's mission to find each and every one of us some comfort in this sometimes cruel world that doesn't understand the hell we go through. Surely there will come a time when we and our loved ones with schizophrenia will be welcomed with open arms in a place where we can finally breathe, cry tears of relief that we are not alone in this fight against stigma, and feel safe to say "me too" and change other's lives like you have changed mine in profound ways by being here.

I feel a great love for you and your presence and most importantly your unsurpassed strength. We all have a story and I hope that in telling mine, I am, in a way, telling yours too so that someday, somehow this world will be a better place for having known us and our loved ones living with schizophrenia.

Monday, September 22, 2014

Guess What?

I have been reading everyone's comments on my post yesterday and everyone pretty much seemed to back me up about Thomas stopping the Cymbalta. So, yesterday I asked him what he wanted to do and he wanted to stop it so I gave him my full blessing to do so. He was on the lowest possible dose so stopping it wasn't a big deal especially concerning any side effects he might get (withdrawal). After eating breakfast and about 2 hours into his day he felt good. This was the cutoff time we were looking for to see if the Cymbalta might have been the key. Guess what is causing the akathisia? Yep, you guessed it. That dang Cymbalta. Yesterday at dinner though I told him that we should try going back on it today to see what happens. This will be a 1 day trial and then we're through with it. It's a full 1 week and 1 day until we see Dr. N. and I'm not going to wait around with Thomas in misery having to live with that wretched feeling.

The day that he had the akathisia, after having walked to try to burn off some of the energy, it was still around so I suggested he take a lorazepam which he did. That brought it down to a 2 out of 10. I point loss of the 4 was the walk and 1 point was the lorazepam. Well the poor kid can't walk forever and I'd hate to see him back on lorazepam on a regular basis. As a side note, my sister posted here and told me that her daughter, my niece, couldn't tolerate Cymbalta either. Her daughter, Mona, lives with bipolar I disorder which is nothing short of hell as far as I am concerned and since she shares a similar illness to Thomas and is his cousin, it's not surprising that the both of them share an intolerance for the same med.

So, yesterday was a good day for Thomas, thank God. He did have to work and said he was depressed at work so I have to wonder if the Cymbalta was helping that. I don't know what to think about this "work depression." Dr. K. tries to tell Thomas that we all hate going to our jobs on certain days and that the depression is normal but I can't shake that it's something different for Thomas. The thing is, he's not the best a labeling emotions, in my opinion, and I wonder if the "depression" he feels is fueled by something else entirely, like a mean co-worker or stressors of the job. That is one thing we have tried to get to the bottom of and can't seem to do.

So all-in-all it was a success stopping the Cymbalta. I did mention to Thomas that he should try going back on it today to see what happens but I think I'm not going to captain that ship. I'll suggest it but I'm going to leave it in his hands whether or not to restart it. He didn't want to go on it to begin with because he was worried about the side effects but Dr. N. calmed his worries about them so he went ahead with taking it but in the end it's the side effects that got him. He had been right.

The only worry for me is that we're setting a precedence here with meds. Basically what we just taught him was that if he's uncomfortable then he needs to stop the meds. I'd hate to see this turn into a cycle of refusing to take meds that ultimately would help him. That's all I need is a kid, like so many of you deal with, that begins to refuse meds, leaving me with a sick young man on my hands.

Friday, September 19, 2014

Living His Life The Exact. Right. Way.

Yesterday was Thomas's therapy session and I got called in again. After yesterday I'm back feeling like Dr. K. and I tag team Thomas and in a way rip him to shreds. I will tell you right now that Thomas told me yesterday that he doesn't feel like that is what is happening but as his mom and as someone who's been through tough therapy at times in my life, I feel like these sessions are kind of.......mean(?).

A really good sign, a sign that Dr. K. thinks Thomas is doing well as far as positive symptoms go, he didn't make Thomas rate all of his symptoms on that 1 to 10 scale. Perhaps, though, that was because we opened the session with talking about Thomas's newfound inability to sit still. This started Wednesday and has stuck around. This answers the question of why Thomas has been out of his room a lot in the last couple days. He tells me that when he sits at his computer to play a game or something, he has the urge to stand up and walk around. Apparently on Wednesday when his dad and I were out running errands all day, he spent a good part of it just walking around the house. Poor kid. A good solution to it that helps him for a couple of hours is that I have started a weight loss program for myself and I have so get in 10,000+ steps a day so outside of my own exercise I do, I recruit Thomas to walk 1.2 miles with me in the middle of the day. If it weren't so hot here right now I really think he'd like it more but at least it helps him.

Then, in therapy, we got back to Thomas's regimental way he makes his breakfast and the anxiety around it. Dr. K. asked several more questions throwing down scenarios for Thomas to think about and say what he would do in those situations and finally Dr. K. says,

"You know Thomas, you have O.C.D."

So there it is, we are now slapping another diagnosis on Thomas. The O.C.D. has come up in the past but had gotten sidelined for all of the schizophrenia stuff. But here we are again and here is that diagnosis again. So this is where the "mean" part of the session went on. Throwing down all of those scenarios pretty much showed that Thomas's way of living is "maladaptive." I put it in quotes because I will confess that I have a little O.C.D. myself and I don't ever see it as a problem. It's just the way I live my life. As such, I see that Thomas just lives his life much the way I do. Sure, some of the things are a little bit much like he couldn't put a sock in his underwear drawer and leave it there without going crazy knowing it's there but c'mon, what is it hurting to want to keep your drawers organized? That's not the only example but you get the idea. In questioning Thomas and asking him to problem solve ways to change those patterns, I felt like we were attacking him. Between Dr. K. and I, he would ask about something and I would confirm it with an example, and poor Thomas would be left made aware that what he's doing is now O.C.D. Worse than that is the promise that therapy is going to be centered around breaking those patterns for a while. Quite honestly that gives ME anxiety. I know the pain of trying to change one of the "patterns" and I don't want him to have to feel that when he's just living his life, albeit in the

Exact

Right

Way,

No

Allowances

For

Mistakes.

So, the session was painful, apparently more for me than for Thomas but it was revealing and sadly so, we now know that Thomas is struggling with yet another issue. I feel bad for him. He has enough on his plate without anyone trying to dismantle his coping mechanisms. Now we're looking at 4 diagnosis, paranoid schizophrenia, anxiety, depression and O.C.D.

Geez! When does it end?

Poor Thomas.

Thursday, September 18, 2014

Those Goofy, Lopsided Grins

Now, I realize that I have been writing the last couple of days about the sadder, more difficult side of having a loved on with schizophrenia. Those things will never change and they hit me from time to time so I write about them. But then I write about what I'm writing about today. This is the kind of thing that balances the grief because we have to remember it isn't all about just one side of this illness.

Bless Thomas's heart the last couple of days, more so yesterday than the day before, because I keep catching him with a goofy, lopsided grin on his face. He does this from time to time and it's always so beautiful to see but it's been nice, especially lately, with my grief kind of setting up shop. I have talked about these secret smiles of his in the past and mused about what they're about because he never has an explanation for them. I have wondered if he's responding to something (a voice? a hallucination?) inside of him and I have been left every time with questions about that. You know what though? I don't want to seriously question it today, I just want to accept it and hold it close to my heart.

Let me set the stage. Apart from the fact that some of Thomas's patterns have changed yet again like he's spending more time out of his room in the living areas with the rest of the family, he seems to be doing halfway decently. I'm not sure if I have the Cymbalta to thank for that or even the fact that his job has cut his hours to just 10 a week but c'mon, seriously, I'll take it anywhere I can get it. So, yesterday I walked past the kitchen and he was washing his popcorn bowl from the night before. From there he always puts it back into the cupboard in the hallway and when he does that the door to the cupboard blocks my way into the hall. I stood there patiently waiting for him to finish what he was doing and as the cupboard closed I peeked around the side and there he was just standing there smiling that silly smile. Instead of questioning it, I commented,

"You seem happy today!"

To which he seemed a bit unfazed and he just said,

"Yeah."

You see, I don't think he realizes that he's smiling. Just like a lot of things about his emotions, I seem to catch them long before he computes that he feels them or is expressing them and I think that held true for that beautiful smile.

He closed the cupboard door and went about whatever he was doing next. All day, at random times, I caught him smiling. Truth be told, I want so badly to know what the heck is going on in that mind of is that prompts those smiles. The thing is, if it is some sort of hallucination, then I want to be in on the hallucination that makes him smile! There are so many things to be scared about when it comes to the positive symptoms of schizophrenia so any time I can find some joy in those little buggers, I want to be front and center soaking them up.

Alas, I will never know. At least for now if I'm going to accept, and not ask, about the smiles. In the end, does it really matter where they come from though?

He's smiling.

That's enough.

Wednesday, September 17, 2014

Dreams For The Future

Yesterday my mom and I spent the day together. We talked about all that my dad went through before he died and we talked about what we went through together as mother and daughter as he declined. As it always does the conversation went to Thomas next and how he is doing. My greatest tragedies have been the loss of my dad and the loss of my son. The kind of losses are different, of course, but they are both painful just the same.

We talked about all of the losses Thomas has incurred. One of the ones that most breaks my heart is that he has this girlfriend that lives across the U.S. from us and the two of them only text. They never actually speak on the phone nor do they send pictures to each other. Dr. K. sometimes tosses out that Thomas ought to just jump on a plane and go see her and even though Thomas could afford to do it, he doesn't and I don't think he ever will.

The thing about that relationship is, it is all "fantasy" based. Not in the lurid way, it's just that they can only TALK (text) about holding hands or holding each other. My mom expressed how she felt Thomas would never marry or have kids even though he says that is something he wants for his future. The said thing is, this is one of those realities about Thomas that I try to never think about because it breaks my heart but the truth of the matter is, I think the same way as my mom. How could he have anything more than just exactly what he has now if he can't even exchange a picture with his girlfriend?

In that conversation it occurred to me too that the only human physical contact Thomas gets is from me (on a regular basis) and my mom when she comes by every now and then. It's heartbreaking to think about that. How can a person live with so little physical outpouring of love? I sit with him and watch a movie where two young people his age find each other and fall in love and they have a normal relationship with all of its benefits that are a part of having a human relationship where two people are in each other's physical presence. I wonder, does he watch that and yearn for those same things? Does he miss them? Does he even want them? To tell you the truth, I am actually terrified to ask him, afraid of the answer, because I couldn't face that he wants something he can't have. This is one thing I cannot provide for him and it is one of my greatest heartaches where he is concerned.

Then my mom asked me, what do I see for his future? What do I want for him? Again this is something I don't even truly want to face or discuss because the truth of the matter is, down deep in my heart, I don't see a normal life for Thomas. I told her, though, that the best I can hope for, what I want most, is for him to be as healthy as is possible for him. Even in his best times, he is still isolated, anxious, and lives in a narrow world. When I think about his future I think to myself, this is it, these moments where he is his best, this is what I want for him even though it's not a life that he deserves. If he can be happy, if he can not be sedated, if he can still get out and go places with me, if he can still build the models he loves to build or draw or play the computer games he spends most of his life with, then all of that is better than his worst moments stuck behind the locked doors of an institution, sedated, angry, hallucinating, and scared.

So, there it is in black and white. The truth of it all is that I want for him his very best days that I have seen him have since he's been sick and I want those things not because I don't wish for him to have more but I want them because I know down deep inside that that is what he will get thanks to this illness. Dreams are a funny thing. Especially dreams that we hold for our loved ones. The fact is, our own dreams for ourselves rarely come true and our dreams for our loved ones are not ours to decide or control. We can want them to have the world but if their world is their bedroom, or an assisted living home, or a hospital or prison, that is their reality and their life to live. We can wish for more with all of our might but in the end, we can't make other's dreams come true because manifesting our own dreams takes perseverance and faith and a lot of hard work and even then, most times in the end, we don't get what we want.

So...what do I see for Thomas's future? Well, I've said it here and it sickens me. My pessimism sickens me but however much I fight off the nausea, what I can't fight off is the truth. I will never stop wanting more for Thomas. Why would I have it any other way? But when pressed for the truth of what I see for his future, based on what I have seen so far, I see far less than my dreams can reach FOR him. All I want, all I pray for, all I plead for in his hardest times, is that this illness doesn't take him away from me any more than it already has. I will always provide the world to him in what ever way I can but if he doesn't reach out and grab that brass ring, in the end, it is his choice where his life goes and having offered the world a thousand times in a thousand ways so far in his life, and having seen what he can take and what he is unable to, what I want for him most is his safety, his health, and whatever happiness he can grab ahold of.

Tuesday, September 16, 2014

Missing: A Young Boy Has Disappeared, Held Hostage By Schizophrenia



This picture is my son's milk-carton picture. It was a beautiful summer day, hot, perfect for play in the sprinkler. He had been complaining he was hot so I got the sprinkler out. I sat by and watched as my beautiful boy not only ran, but seemed to dance through the rising and falling droplets. He was free here. And happy.

Within a couple of years he stood in the living room before my husband, Dan, and I with a respirator mask on, holding a letter with no return address certain that the envelope contained anthrax and that he would most certainly die if he didn't wear that mask and handle that envelope properly. When the envelope was opened it was just a letter from the National Guard Recruiter, no anthrax, no ricin. That day, two dreams died. The opportunity to be in the military died without us knowing yet but would discover later that they didn't want someone with schizophrenia within their ranks. The other dream, though we didn't know it yet, was that my son's promise was slipping away as he stood there wearing that respirator mask.

Then Slender Man began hunting my son. He showed up on a beautiful day much like is pictured here. He showed up on a sunny day forcing my son to close all of the curtains in the house so he couldn't see Slender Man coming to kill him. He was terrified and from that day forward into a couple of years following, believed Slender Man was outside his window, hidden in the white shower curtain in our bathroom, and hunting him in his dreams. My son began to alter his life to accommodate this monster and an as-yet-unnamed illness stalked him day and night.

Then one day, yet another ordinary one, in a run-of-the-mill therapy session and at the very end of it, the loud thunderclap of schizophrenia made itself known in grand fashion as my son described how he was being followed by the F.B.I., how he was paranoid, and how the government's satellites were all turned to focus on our neighborhood and him as he walked to his friend's house. Terrified that the F.B.I. would jump from a white van or from behind a big bush down the block, just outside the circle of light coming from the street light, his world became smaller as he stopped walking home alone from friend's houses.

Then came the hospitalizations, a constant trial of medications, most of which caused more harm than good, and finally, thanks to 6 medications, all at once, downed every day with juice in a ritualistic, regimented process, my son disappeared.

For years and years I had searched for what stalked him. It wasn't anthrax-filled envelopes from a terrorist, it wasn't Slender Man and it wasn't the F.B.I. What stalked him and stole him from me was schizophrenia, probably the worst monster of all and the only one we couldn't shut out of our house by closing our front curtains, changing the shower curtain or locking it away behind 2 hospital doors where the only way in was to show 2 I.D.'s, endure a search of the clothes I brought to make my son comfortable, and sitting together in a room filled with people all suffering similar fates.

Nothing and no one could arrest this monster, throw it in jail or put it to death in an electric chair thereby insuring it wouldn't come after my son anymore. It is here and it is raging and it is just out of my desperate reach to strangle it before it takes my son away for good.

This is my son's milk-carton picture. I am a mom holding the carton, looking at the sweet boy dancing in the droplets and wondering when he will come back to me, or worse, if he will at all. I am a mom holding the milk-carton wishing for just one more one sunny day that I could hold my camera in my hand and capture the essence of my son before he was so cruelly taken from me. I am a mom holding the carton and taking a deep breath, releasing it slowly, and putting the carton back in the fridge trying to preserve what is left of my son.

Monday, September 15, 2014

The Driver's License Question

I was thinking last night as I drove Thomas home from work at 10pm, why doesn't he have a driver's license? I think about how easy it is to get from his work to his home and back again and it seems pretty harmless. Then I remember the stress it used to cause him. Then I also remember that he's a 6 out of 10 for anxiety just to butter an English muffin. Could he even drive now? On occasion he talks about getting his license but he never follows through with it--finding out what he needs to do to get it. I have reminded him many times but at what point does my "mommying" stop and he takes over getting that done? The thing is, too, I'm not sure he'd really go anywhere if he did have a license, besides work. We have a little grocery store within walking distance that he rarely goes to for a snack so what else are his needs? He never wants to hang out with friends, or wants to but never seeks them out, he always waits for them to contact him. That one I have never understood. He WANTS to hang out with friends but he WON'T REACH OUT. Strange.

Let me outline the evidence for why I'm not on top of this driver's license thing and forcing the issue. When he was learning to drive, when he had his permit, he was a little more healthy than he is now. Not much though. In one day's practice, we came upon stopped cars at a light and the speed limit was 35 miles per hour and he maintained that 35 mph as he approached the stopped cars in front of us. I said to him,

"Thomas, watch out."

He was lost somewhere in his head.

"THOMAS!!"

Still lost not even acknowledging my voice or panic.

"THOMAS STOP!!!"

He stopped, but just shy of hitting the car in front of us. Perplexed, I asked him,

"What just happened there?"

"What?" came his reply.

"Did you not see the cars stopping in front of you?"

"I don't know." he said.

Huh, "I don't know"??? Does he really not know? Was he lost in that zone he appeared to be in and had I not said anything would he have rear-ended the people in front of him?

Then we crossed town and came to another light that I drive through with him frequently. Again, zone. Again I waited a second to see what would happen. Then

Whoosh! Through a red light!

Uh yeah. Okay, not cool. So okay, I let that go because I knew reprimanding him for what he had just done would stress him even more. I did ask him if he knew he blew the light and he said he didn't, he was unfazed. Then, we drove to his friend's house. We drove, but not in any way that made sense. I had driven him there a thousand times and he should have known the way yet he wound through back streets seemingly lost in a maze. When we got to his friend's house there was a bush hanging into the road and at as he pulled up to his friend's house he blew through that bush.

"Did you not see the bush?" I asked.

"Oh.....no....sorry."

So in the course of driving from one end of town to another, I had a kid lost somewhere in his head the entire way, we almost got in an accident, he blew through a red light and he got lost in the maze of neighborhoods instead of going the direct route. It wasn't good. It scared me and after that day I backed off of rushing him to get his license.

Then he got sick. Really sick. He was sedated most of his days and nights and he definitely didn't belong behind a wheel. So, since then I have left it alone telling him when he asked about getting a license that if he wants one he has to learn what he needs to do to get it--which entails calling or going to the DMV, picking up a book to study out of, making an appointment for a in-car driver's test and taking the written test. All things that are nearly impossible for him to do. I wonder though, am I depriving him of a young man's right for independence? Does he really WANT that independence? Remember the English muffin? Really, if he can't butter an English muffin without my help, or even "know how to" which, c'mon, do any of us need to "learn how to do that"? I know, I sound mean with what I'm saying. In fact, I feel a little mean saying it, but I guess I am just in that state of mind where I think I have a normal 19 year old kid living in my house who does not have schizophrenia and who should know how to do the most basic things without reaching a 6 on the anxiety scale.

I don't know........

I just don't want to be responsible for depriving him of his right to grow up, leave home, have a driver's license, live on his own, you name it. Sometimes I really look at myself and wonder,

"Am I keeping him home with me for selfish reasons?"

My answer to that is complicated. I want him free, I want my house to myself just me and my husband, I want Thomas successful but I just don't think he's ready. Will he ever be? Is this me keeping him home or is he here because he can't be "there", wherever "there" is that isn't here with me.

So, the driver's license. Should he get one, I ask myself? Not if our last experience is any indication. Not if he continues to drop the ball on even seeking out what it takes to get one. Frankly I'm scared. I will hold the insurance policy on him, he's bound to hit someone or something, I'm not sure there's a way to come back from that for him or for me. That first accident would be his last in my opinion.

For now, I am content dragging my butt out of my cozy warm chair at 10pm and driving, in my jammies, across town to pick him up and bring him home. He's safer that way for now.

Sunday, September 14, 2014

Good Sunday Morning Everyone!

I realize that it is no longer morning for a lot of you but I am just now getting out of bed. It was a rough night. It appears that my dad's death has caught up to me and I have developed PTSD which means the minute I lay my head down on my pillow at night it's like someone turns on a slide show or movie about the last 6 months of my dad's life and I relive it in perfect detail right down to the moment I saw him dead. It's become a small hell, who am I kidding, it's bigger than small. Anyway, that's my excuse for running late today. Thankfully this is a day of inspiration for the page so I have found some things on being grateful and I thought I'd share those. We have to remember to be grateful for the good things in life, the things we have, the love we have, the very breath of life we have.

Someone asked about how Thomas is doing in the last couple of days so I thought I'd try to fill you in. I say "try" because I haven't seen a lot of him, especially yesterday. I went grocery shopping and errand running with my mom yesterday and left before Thomas woke and then was in and out of the house the rest of the day. Then he worked last night so he was gone all evening.

What I have seen of him, not too much has changed for him but the Cymbalta needs a little more time to work. I have noticed that I see him a lot less during the day when I am home because, with this new med, he seems to have lost his appetite which means he no longer comes out of his bedroom seeking snacks all afternoon. I told him the other day while I hugged him that I really missed him. It's funny because he's right there, just down the hall and behind a closed door but I miss him.

As for work, he told me he only works one day this week. I am grateful for this since he's not doing so great right now. I did tell him though to use the time to heal because come the holidays they are going to be calling on him a lot. This was met with apprehension on his part. I know that he's trying to shore himself up for the holiday crowds and since he's struggling with symptoms everything is going to be magnified for him. Honestly I am very worried about the next few months since the fall and winter historically are his hardest times. When I went to pick up his meds at the pharmacy yesterday my favorite tech came over to talk to me and ask how Thomas was doing. I told her what I have told a lot of people lately:

"Fall is when he starts to get symptoms again, winter we spend in the worst of the illness, spring we spend trying to stabilize him and summer we get him back for a while and this has been the cycle for at least 3 years now."

I personally am not a fan of the changing seasons because between my bipolar disorder and his schizophrenia, it's real rollercoaster ride. My hope is that this will become some sort of routine (?) that I get used to after a while though I have never gotten used to my own illness. It sneaks up on my every year and knocks me on the back of the head and I go through the same cycle of trying to avoid taking meds until the bitter end and by then I'm so miserable that it probably takes twice as long to get me better. Thank God Thomas is nothing like me in that respect. He only denied needing his meds when he first got sick and since then the biggest problem has been making sure he remembers to take them. I am very lucky in that way.

So, anyway, I want to get to work on making this day on the page a good one for everyone so I'll close this posting. Have a good day everyone and THANK YOU SO MUCH for making yesterday such a success by sharing and 'liking' the articles I posted. I feel very lucky to have you all.

Friday, September 12, 2014

No! You Don't Get To Be Sad!!

Well...(deep breath)...yesterday was Thomas's therapy session.

And I got called in which I thought I wanted because I wanted to bring a couple of things up for Thomas to work on in therapy. So, the session begins with Dr. K. saying,

"Thomas, you're doing really good. I think you're doing really good so I have a new homework assignment for you. Since you're doing good we have to get to work on some things so we can further your progress while we're able."

I stopped breathing and thought to myself,

"He thinks Thomas is doing good. Do I say anything? What could the homework be? Can my new Thomas who is struggling handle this new assignment?"

Since Thomas struggles with social anxiety the new plan is to have Thomas ask someone for directions or for the time when he is in a store. Okay...easy enough I guess.

Then the subject of medications came up. Thomas said,

"We decided that I should start the Cymbalta."

"We?" said the good doctor.

"Well, we is Dr. N. and I."

I was glad I was knocked out of that "we" because I have made a concerted effort lately to stay out of changes in meds. So with that announcement Dr. K. started to write down all of the meds Thomas is on.

Latuda. Check.
Clozaril. Check.
Buspar. Check.
Wellbutrin. Check
Cymbalta. Check.
Ativan. Check.

Then came the pause. Oh how I hated this pause. I knew it could mean so many things. Then Dr. K. took a deep breath, released it, and said,

"Wow, you sure are on a cocktail aren't you?"

This was said with a sadness so deep that my own heart was torn from my chest. I really hate that. I hate when the professional gets sad. I hate it because I look to them for the light in the situation and to reassure me that things aren't as grave as I think they are. Alas, that was not to be so my heart sank in my chest as I realized that things with Thomas are serious.

Noooooo!!!!! Please no. Please let me stay in my denial. Please.

Please???

Then we talked a little more and I brought up the ADL (activities of daily living) questionnaire we had filled out this week. I related this story to Dr. K:

The other day Thomas was getting his breakfast together. Mind you, he has a very set way of doing this. Very set. Like, he doesn't deviate from it at all. So I asked him if he wanted an English muffin instead. He said he did but he didn't know how to work the toaster oven. So I taught him and left him to make his muffin. Then he came to me and said that he thought it was done. I told him to reach in very carefully and touch the muffin and see if it's toasted enough for his liking. He did and decided it was ready. So I came in and I asked him if he wanted butter on it. He did but "he didn't know how to do it right." So I told him I would butter one half and show him how and then he could do the other. I left him to that and came back to find his half barely buttered and he was taking it to his tray.


"Why didn't you butter it more?" I asked.

"It's fine." he said.

So I left him with his 1/4 buttered muffin and walked away. I felt bad for him. He was so caught up in making sure that he did it right and he felt like he didn't so he just gave up and decided to eat it pretty much plain.

Then Dr. K. asked him why he didn't butter his own muffin all the way?


Thomas said, "because I'm afraid I can't do it right."

To which, Dr. K. asked, "what would happen if it wasn't exactly right?"

To which Thomas gave this some thought and then said, "It wouldn't taste good."

So Dr. K. asked, "so you'd rather eat it plain then try to get it buttered?"

Thomas quietly said, "yes".

Then it came again. The questions.

"So you have a lot of anxiety about preparing your English muffin?"

"Yes."

"What is your level, 1 - 10 (10 being the most anxious you can be) of anxiety about 'getting it right'?"

"A 6."

"Really?" asked Dr. K.

Really? I thought to myself. A 6? Oh God that is so high. Poor kid. A 6? Why so high?

Dr. K. tried to work with this and in the end came out learning from both Thomas and I that he has a lot of things like this about daily living that cause him this level of anxiety (a good argument for why he can't live on his own right now).

Then Dr. K. leaned back in his chair. He took a breath. He put his hands behind his head and sighed. He then turned to Thomas and peered at him squinty-eyed.

"Thomas, I am not mad at you. Not at all. Do you understand that?"

"Yes."

"I have seen you for years now Thomas, why haven't your told me, your esteemed therapist, the one who is supposed to help you, that you struggle like this?"

Here is where I came to Thomas's rescue and I said,

"Don't you see? He lives with these things. This is his life. He sees nothing wrong with him because this is his normal. There is no reason to report it because there is nothing wrong in his mind."

Dr. K. was visibly sad. Could it have been his doctor's ego? Maybe. But I don't think so. I think he felt genuine sadness for Thomas that he lives in such an anxiety-riddled world. Then the wave of sadness washed over me again. Dr. K. is sad. The PROFESSIONAL is sad which means...

This is not good. Thomas is not well. There are bigger problems here then we thought.

Then I got mad. He's the professional here. He's seen many people come through his office with myriad issues. He's treated people for years. He should be experienced with all of this. Hardened to it in my opinion.

"No! You don't get to be sad!!" I thought.

And this morning, as I write this I think that too. I say it as a mom who wants so desperately for her son to be okay. I say it as a mom who wants desperately to be told that things aren't as bad as she thinks they are. I write it as a mom who sat in her son's therapist's office and HE was sad and what she needed most in that moment was a glimmer of hope that things weren't so bad, that there was a plan to fix this, THAT THOMAS WOULD BE OK! No! You don't get to be sad!!!

Ugh. He does, I do, all of us with loved ones with schizophrenia do. We all do. But somewhere, somehow, from someone, we need hope. We need the problems to be easy to solve. We don't need the cocktail of 6(!!) medications being swallowed every day by our loved ones.

We need hope.

Thursday, September 11, 2014

I Can't Unscrew The Light Bulb

The room was heavy and it felt almost dark when I walked in for my part of the appointment with Dr. N. on Tuesday. The ride up there with Thomas had been a quiet one as I felt I should leave him alone. He's not been doing great lately and I thought he just needed his music and the open road to clear his head. Then as we waited in the waiting room Thomas kind of just stared at his phone, he hadn't brought his handheld gaming system like he usually does and he seemed lost. I hoped that whatever was bugging him would come out in his session with Dr. N.

When it came time for me to come in, I looked at Thomas and saw something wasn't right and Dr. N. wasn't his usual animated self. The room felt closed in and twilight-y, like the sun was beginning to set and I knew I wasn't going to like what I heard. Dr. N. asked me if I had anything to report and I told him about what I felt was a growing depression in Thomas and I told him I just felt like something wasn't right. Thomas sat there slumped in his chair not meeting either of our eyes and Dr. N. spoke. He brought up the Cymbalta and he started talking about side effects and what to expect. I was confused, hadn't Thomas told me he didn't want to be on it because of the side effects? It appeared we were talking about adding that in to the regimen and I sat there a little confused. After Thomas' announcement to me that he didn't want to take it, I figured we would have a fight on our hands in the future trying to get him to try something new if need be. So what was happening now? Why the darkness?

As we sat there I began to realize that Thomas had admitted something to Dr. N. that I wasn't privy to, which is fine. Of course I wondered but I wasn't going to ask what it was. At least Thomas was talking to someone. Dr. N. went on to discuss the starting dosage and how it would give Thomas energy and I latched on to that. It's not that I don't want him to have more energy, I just don't want his sleep disrupted. I looked at Thomas and willed him to look at me and I said,

"Thomas? I know your sleep is important to you. How would you feel if the Cymbalta made it so you couldn't sleep much? I know you sleep 14 hours a day but do you want to limit that? I feel like your sleep helps you and I'd hate to see that interrupted."

He agreed and Dr. N. said we would keep an eye on any interruptions in sleep.

Then Dr. N. said it. The "it" I have wanted to hear him say for a while but somehow now felt like I'd been slapped. Not only were we going to add in the Cymbalta but he felt strongly that we shouldn't change anything about the meds Thomas was already on. He was quite adamant about that and after his last few attempts at trying to cut something out of the mix, I couldn't believe he was now standing strongly behind keeping what Thomas is on in place.

The "twilight" room got darker and it hit me that we were facing something big again. Not touching the existing meds and adding one more in was a big lighted sign pointing down at Thomas that was saying,

"Something's going on, your kid is struggling big time."

I hated that sign. I wanted to unscrew each bulb in it and grab Thomas and run.

No.

No.

Schizophrenia isn't going to do this to my boy again.

No.

Failing my ability to unscrew even one light bulb I took Thomas across to the next town for lunch. I asked him if he wanted to stop anywhere and shop hoping that he'd grab on to some fun and we could take our minds off of whatever was plaguing Thomas. Solemnly Thomas looked at me and said that he'd just rather get lunch and go home.

Oh God. Please. No.

You see, what I'm trying to say here is that I see my kid's spirit dying a little. I see something is eating away at him and I'm fairly certain our nemesis schizophrenia might have a hand in it.

Look, a part of me knew deep down inside that this was going to happen. For 3 years now, come the Fall season, Thomas has shattered to pieces and the months of goodness we had enjoyed previous to that had slowly slipped through our fingers until what we had left was a paranoid, delusional, anxious, sedated, unable to finish a night at work, young man.

I know, I know. Cymbalta is just Cymbalta. It's an anti-depressant. Practically the whole world is on an anti-depressant, this should mean so little to me. But not changing his other meds AND adding in Cymbalta, that darkened room with that neon sign hanging over my kid, all of it is yet another moment I now find myself in as I grieve for what has been lost in the last couple weeks and what I just know will be lost in the next few months.

I hope I'm wrong. I hope it'll be November and I'll be sitting here writing about how great Thomas is doing but if history has anything to say about it, come November, I'll be grieving the loss of my boy and praying for better days and holding on to my old friend "hope" and waiting out the inevitable.

Wednesday, September 10, 2014

Parallel Lives--A Story for World Suicide Prevention Day

In a thousand ways this story is hard to write. I write it though because I want you to understand that there is a life beyond those desperate moments of wanting to take your life.

Mine starts when I was 15. I hated school, I hated life, I was deeply depressed and wanting to run away from home. I had recently broken up with a boyfriend who was everything to me. After that breakup though I met another guy. He was funny and he had a lot of qualities I liked. He was older than me though, a senior in high school, and I think he might have looked at me as too young for him.

One afternoon we were talking on the phone and I felt for certain that he was going to ask me out on a date. He didn't. And I lost it. With my depression fueling my actions, with rejection confusing and angering me, I went to my mom's bedside drawer and took all of the pills in it and went into the kitchen. There I pulled out a bottle of scotch and I poured all of the pills in my hand and downed them with a few swallows of scotch. Not certain that I had done the job, I found some aspirin and allergy medications and I took those too and I went and crawled in bed and started crying and called my ex-boyfriend that had broken my heart months before. I told him what I did and he told me to get some help and I told him I would and hung up and apparently passed out.

I woke up to my mom telling me it was dinner time so I came out of my room and sat at the table horribly nauseated from everything I had ingested and I asked to go back to bed. My family didn't know what I had done and I hadn't left a note. All I wanted was to be dead.

The next day I awoke alive and was disappointed. Still not wanting to admit to what I had done, I went to school. I sat in my first class in and out of consciousness and my math teacher, who I am grateful for to this day, could see something was wrong and he allowed me to excuse myself to the bathroom. I sat on the bathroom floor sick, sedated and pale and someone must have found me there because after that I don't remember what happened.

The next day I sat on my mom's bed with her and we cried together as I told her about what I had done. She was horrified but told me about how she had struggled as a young girl too and she understood the pain I was in. Knowing my mom understood helped me but I needed professional help. Within days I was sitting in a therapist's office being treated for major clinical depression.

That was me at 15. A young girl struggling in life and desperate for help and for someone to take notice. I was lucky. I lived and got the help I needed. I could have died that fateful day but somehow my life was spared and because it was, I was able to get the help I so desperately needed.
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The Parallel

My boy, my sweet young teenage boy, struggling in school, struggling with prodromal schizophrenia symptoms, struggling with depression and bullying and he would tell you that the worst part of it all was that he was struggling to find a girlfriend. My sweet young teenage boy had many girls who were friends but no girls who wanted to be his girlfriend. For reasons I don't know and can only guess, he didn't have a girlfriend and to him this was just what he needed to feel a part of high school life. His friends all had girlfriends and he felt deeply alone.

One evening he couldn't take it anymore. His friends had invited him out but they were all bringing their girlfriends. Thomas wanted to go but he wanted a girlfriend to go with him. That was not to be. So, he began chatting with a friend on Facebook and sharing how much he wished he had a girlfriend. His friend worked valiantly to get Thomas out of the house and out of his mind where he would be surrounded by people who cared. Thomas didn't want to go. He wanted to stay home and while chatting with his friend he told him that "he just couldn't go on anymore."

I missed all of this because I was on the road on my way home from a trip but I came home to my husband in the front yard telling me that Thomas had threatened on Facebook to kill himself and someone had called the police. They were no longer there and I questioned their absence. It turns out they had left because Thomas had assured them that he would be okay with his dad. That wasn't enough for me. If the police weren't going to do anything to help my boy then it was up to me to save his life. I sat down with him on the couch and in a similar conversation to the one I had with my mom after she discovered I had wanted to take my life took place. I told Thomas how I understood his pain and I promised him things would be different someday but together, with tears in our eyes, we packed a bag for the hospital and went and checked him in to our local psych ward.
_____________________________
_____________________________

Here we are now, my boy and I, alive and unscathed and for myself as his mom, I keep a vigilant eye on him constantly always trying to gauge his moods. The possibility that he could end his life is acutely a part of our lives and it is my life's mission, my experience with the same sort of pain, that makes me his savior in times of deep depression and hopelessness. My own life is no longer in danger by my own hand because with age and experience I can see that there is ALWAYS A WAY OUT, ALWAYS SOMEONE TO TURN TO, ALWAYS HELP, ALWAYS SOMEONE, SOMEWHERE WHO CARES.
I write this story of our parallel lives, Thomas's and mine, because on this day, World Suicide Prevention Day #WSPD14 we need to be reminded that we are not alone.

Nobody is alone.

You do not suffer alone.

Somebody out there cares.

You just need to find the strength to even just whisper the words "Help me, I want to die right now." and someone will listen.

Reach out, get help, and see what life has in store for you.

I promise you it won't always be this way.

And so I think to myself from time to time and most especially today, had I been successful that day when I was 15, had I not gotten help, I WOULD NOT HAVE HAD MY TREASURE, MY LIFE, MY BOY. He would not exist on this planet had I died that day.

Even closer to my heart, had that young friend of Thomas's who chatted with him on Facebook at Thomas's lowest time, had that young man not had the wherewithal to call the police, my boy could be dead right now.

*********************
From The Suicide Prevention Hotline: No matter what problems you are dealing with, we want to help you find a reason to keep living. By calling 1-800-273-TALK (8255) you'll be connected to a skilled, trained counselor at a crisis center in your area, ANYTIME 24/7."

Tuesday, September 09, 2014

The Importance Of Routine

I have thought a lot about routine for Thomas lately for 2 reasons. First because of that article I posted a couple days ago but most importantly when he was asked in his ADL,

"What would happen if mom changed plans when you already had something to do? What if you had plans to do something and she insisted that today was a day to go shopping and you had to go with her? How would that make you feel? How does breaking routine help or hurt you?"

His immediate answer was that he would be really upset.

After that, I have been assessing our lives and just how routine it is. Let's just say we lead the world's most boring life. Everything happens the same way all of the time. Even things like today's visit with Dr. N. are scheduled ahead of time so they become a part of the plans, a part of the routine, even though the appointments are 3 weeks apart now. I am always awake to greet him every morning, he gets up and showers sometimes, he comes in and makes his breakfast and more often than not wants me there with him to help. He takes his pills and he retires to his room with his breakfast on a tray. His dad comes home around the same time every night, we eat dinner at the same time every night, he takes his pills and then he again goes to his bedroom for the rest of the evening.

Boring.

But routine.

Just exactly what he needs.

I noticed the other day, too, that when my husband and I were having a heated argument, Thomas was in a great deal of distress. He has always been like that, affected by other's moods. That argument culminated in my husband, in a less than polite way, asking...no TELLING Thomas to take out the trash and clean the basement stairs where dog and cat hair had clumped in the corners. The argument didn't help things but even worse in my opinion is my husband's inability to ASK NICELY for Thomas to do something around the house. Thomas has gotten so good at remembering to do some things on his own and he had even vacuumed the stairs recently but my husband calls him down the stairs and I hear him down there roughly telling Thomas what a mess this, this and that, are and that he needs to start noticing things and get them done. NOW. It makes me so mad that he can't just say "please do this thing." or understand that Thomas isn't intentionally leaving dog hair in the corners, he is just doing the job he was asked to do and no more. He needs accurate, detailed instructions for what he needs to do and failing that he needs whoever is asking him to fix it, to do it with kindness which includes a "please" and "thank you."

At any rate, the effect of that whole exchange with how badly he did vacuuming the stairs really upset Thomas and he wouldn't even look at me as I walked by and squeezed his shoulder to show him that I was there and that I understood he was struggling.

I understand that the arguments between my husband and I (though they are becoming less frequent in the last few months) and the subsequent 'picking on Thomas about his chores' events that take place afterwards are just part of being a family but if you want to talk about routine, when you change things up, you need to do that with compassion and thoughtfulness to how your person with schizophrenia is affected by it. We don't live in a normal house anymore because we have a young man with schizophrenia who is affected by the things that take place that are out of the ordinary--that aren't ROUTINE.

So, I laud those of us who manage to keep a routine for our loved ones with schizophrenia. For me it's a small price to pay for a little happiness and peace of mind for Thomas. Anything under my control that can help him cope will be the thing I do for the rest of my life.

Monday, September 08, 2014

What's That Supposed To Mean?

I'll admit that Thomas seems to be doing better lately. It's been beautiful to witness. Something shifted yesterday again, though, and I am worried again. I don't know why it is but those shifts feel like someone sitting down on a couch as if they have jumped into it with their full 200 pound body weight. In fact, that's exactly what it's like because you're just sitting there relaxing and bam! someone rude comes in and disturbs your peace. I think my rude couch mate is schizophrenia. I can't be sure....

Dang it, yes...I can be sure...because I've been at this long enough. It has been over two years of serious illness. I think I've earned my right to be certain that the monster is back. I will say, though, that I know it can be temporary and I hope that is the case now.

Yesterday Thomas woke up a wreck. Well...woke up isn't the right way to put it. He came in to the kitchen, eyes half closed, his aura was one of someone in a bad mood and he was just kind of lost. I hugged him and asked him if he was okay and he told me what I dread to hear a lot of times,

"I didn't sleep last night."

That is never good. Not sleeping is never good for anyone but for someone with schizophrenia it means so much more because it means either something about their illness kept them awake or something bad is about to happen because they didn't sleep well.

So we went through the day with him being tired. Pretty much everything seemed fine except that he was kind of aimless and not in a great mood. I did notice as I took him to work that his depression about work seemed not to be there so that was good but pulling in to the lot, he commented on how crowded it was. This probably would have passed me by a lot more had we not had the ADL the other day and he mentioned how much the crowds trigger him. I crossed my fingers and hoped for the best. Meanwhile at home I waited for "the call" to come pick him up but it never came. Thank God.

At 10 p.m. I went to pick him up and he got in the car and right away something was off. He was distant. I asked him how his night went and he said,

"well........(pause)"

To which I responded,

"were you depressed at work tonight?"

...my usual question for him after work since this whole depression thing started weeks ago.

His response?

"No, it was something different."

Something.

Different.

What could that be? So I asked him if he had been anxious ("no") had he been angry? ("no") Had it been busy? ("off and on") and then I was out of questions and we rode along in silence. My mind was racing a hundred miles an hour trying to figure out just exactly what "something different" meant. So then I asked,

"Was it something good or bad?"

"No......(long pause).....it was something neutral."

Okay, neutral. What could that be? I was stumped. What a strange answer!! Nothing concrete, something more ethereal. He was neutral and he wasn't talking. I ended the whole thing with,

"I'm glad you weren't depressed tonight."

to which he responded,

"yeah"

and I told him that things will be better tomorrow because he probably just needs sleep. Dear God let it just be that he needs sleep. As I lay in bed afterwards I ran through my mind a couple things. Perhaps his running commentary voice is back. It's always been neutral, never critical or mean. Or maybe, since it's the season of crowds now as the holidays fire up (the store is now decked out for Halloween and you know Christmas is on it's way), maybe he's starting the struggle with them again and we are looking at the beginning of the end. The end, of course, meaning a psychotic break.

I don't know. I won't know till he confirms something but something tells me something's not right for him.

Saturday, September 06, 2014

Exactly My Point

A page member left this comment below my post yesterday and I thought it was thought-provoking and I thought it would give me a chance to clarify some things even though some other AMAZING and MUCH APPRECIATED page members came to my defense. The comment is as follows:

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"Couldn't agree more with the Doctor and the heading of your "My Services Are Not Needed " I have to wonder is this about you or your Son Who might I add is the victim of this affliction, although you claim its about Understanding Schizophrenia its really more a case of living with someone looking for sympathy. I wont apologise for my words if they seem a little harsh, However do you really understand ? as you yourself are not a sufferer."
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First of all, I know I am not a sufferer. I don't pretend to be. Who I am though is the mother of my one and only child who lives with schizophrenia. My blog begins and ends with my story and my experience with caring for Thomas. Whenever possible I add in his actual experiences but yes, sometimes what I write about is MY experience with HIS symptoms. I think I have a fair and unique perspective that is worthwhile subject matter for a blog and I have countless people who share my same perspective and experience. I won't speak for anyone else here but I will say that I don't write for sympathy, I write to educate others about what it's like to "love someone living with schizophrenia." Those last 5 words are actually on the banner at the top of my page. I write expecting nothing in return other than to be able to open a forum for others to say, "me too" and share their own experience. All of this is done in the hopes that the naysayers about schizophrenia and what it's like to be a caregiver for someone living with it will see that what their preconceived notions are about this illness and those of us who love someone living with it are not the evil pariahs we are made out to be in the press. My aim is to humanize this illness as much as I can from my unique perspective and to hopefully shed light on the many facets of this debilitating illness--debilitating for both sufferer and caregiver-- as we each live with this illness in our own unique ways.

The are countless triumphs, some of which I have written about lately with Thomas as he seems to be having some good times right now, but there are also defeats, too many to count, that we, as caregivers, feel as much, though in different ways than someone living with schizophrenia.

The title to this blog is "Understanding Schizophrenia." I believe I do a pretty decent job at helping people to understand. This blog is not only my story and that of Thomas's but it also, daily, includes at least one thing that educates or helps someone understand the facts of schizophrenia as an illness. What it is not, and obviously not meant to be, a blog written as a first person account, as someone WITH schizophrenia in an attempt to help others understand their exact experience. There are many blogs and pages out there if you are looking for that forum two of which are Dealing with Schizophrenia and Iron WOman. I happily encourage ALL page members to seek out these blogs so that you can get that type of perspective.

Now, to my page member who posted the above comment, I would never expect you to apologize for your thoughts or feelings. I appreciate them and take them into consideration just as I do everyone else's. We are a diverse group of people from many countries and we each have a unique perspective none of which EVER need to be apologized for. What we ALL need is an open forum to share our stories from our own points of view. No apologies.

As for "looking for sympathy" you are half right on that. It is more like I am first and foremost, by sharing my life with all of you, looking to support others by letting them know they are not alone with what they are going through or what they think and feel about what they are going through. If in my efforts to do that people single me out and tell me how sorry they are for something I am dealing with myself at the moment, I welcome their support of me and my journey.

Ultimately I just want to say thank you to that page member for being courageous enough to speak up and share your opinion. As I said, I welcome ALL points of view but I will also try to respond in the hopes that I can help you better understand my mission.

Friday, September 05, 2014

My Services Are Not Needed

I had to laugh because Thomas's therapist Dr. K came out of his office yesterday and I could tell by his pause in the waiting room that he wasn't planning on inviting me in. I was fine with that. Thomas is doing well and I really have nothing to say. Then he asked if I had any updates and I started to tell him about Thomas's ADL (activities of daily living) form he filled out yesterday with his advocate and Dr. K. immediately hushed me and invited me into the inner sanctum that I was about to be denied access to.

Once inside I explained to him what was going on with SSI disability and things were said I don't remember now, nothing important, but then I did say, as my part in the whole thing was appearing to come to an end,

"Thomas is doing really good right now."

Well. You would have thought I was a criminal, at least that's how I felt, by saying that. He stopped me and said,

"I think we need to hear that right out of the horse's mouth (meaning Thomas)."

Well...pfft...okay...excuse me for doing what I've been asked to do for every appointment for the last two months. Apparently my time has come though. I have outlived my usefulness and now I am relegated back to the waiting room to play slot machines on my phone. Not such a bad fate but Dr. K. had me laughing about the way I was asked to leave. I'll never understand that man. We go along fine one way and then he throws a wrench in the works and we start back over at square one with me sitting in the waiting room wondering what's going on. Yes, none of my business, I know, but it's hard to be booted out after all of this time.

Alas, I will survive though. I do l like my slot machines.

Earlier in the day Thomas and I worked over the speaker phone with his advocate on the ADL. That was very enlightening. Wow! You just don't realize how much your loved one has lost to this illness until you sit through a 45 minute questionaire and they question Thomas on what he does every day, what he DOESN'T do, how his meds affect him, how work affects him and so on and so forth. I came away from that meeting, my brow furrowed, surprised at what Thomas's life has become. I guess the one and only bright side to this rather sad news is that it'll look good for Social Security I suppose.

So, that pretty much made up our day yesterday. I do want to say again, in closing, that this article I'm working on should be pretty cool because, and this is what I most care about about the article, Thomas is taking a big active role in the writing and pictures that will be used in the article. I even interviewed my husband for it which frankly was quite sad and I'm debating whether or not to even put it in to the article though it does reflect his true feelings. It's just that those feelings are kind of harsh. As least I feel they are because I know the true reality behind those comments. I just wish so badly that he felt differently.

Oh well.

Also, in case I haven't said this, when the article is done I will post a link to it here. I can't wait to hear what you guys think!

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