Thursday, July 31, 2014

If I Had A Tiny Wish

I thought to myself yesterday as I drove around town with my husband doing our grocery shopping, about Thomas' moods lately. I try so hard to normalize things that come from him (moods, words, actions) because I don't want to always pin everything on schizophrenia. It's so hard not to do because of the clouds that meander across Thomas' being in my presence. He spends so much of his life in a quiet, stoic place where emotions don't really exist so when those clouds pass by they really stand out.

I spoke up to my husband and I said,

"If I had a wish, not one of the big kinds of wishes you get from a genie asking for world power or millions of dollars but more like a little one, maybe from a birthday candle or something, I wish that I could know what is going through Thomas' mind when he suddenly becomes, what appears to me, angry and he starts answering questions in a clipped fashion,"

Yes.

No.

I don't know.

All said while staring straight ahead and with "the look" that I have labeled anger. I label it in such a manner because in the past when I have asked him if he is angry and he has confirmed that he is, he was acting just the way he's been acting lately. The thing is, I know his anger response. It pops up when I delicately ask about or challenge a delusion, or when I press him for answers to something big or worldly like how he feels about religion or what happens to someone when they die. It is those questions that have taught me the indicators of his anger and that mood is one, that for some reason, scares me to death mostly because I grew up in a household where anger was freely used and more often than not, pretty scary.

So, because I seem to catch the clouds around Thomas during drives, I drove him to the bank yesterday and tried so hard to get him to talk to me about ANYTHING but every question was met with one of his clipped yes's or no's or I don't knows and with this look on his face like he wants to break something. As per usual, I got no response and we went back to listening to 40's music on the radio. You know? That's the other thing, the 40's music. He has told me in the past that it calms him so I'm acutely aware that when it's on, that there is something inside of him that needs calmed. So with that music and with his seemingly angry mood, I am left in the dark sitting in the car later on with my husband making little birthday candle wishes wanting to understand Thomas better.

That young man is an enigma to me. I spend more time speculating about him than I do actually knowing him because all I ever have to go on to solve the mystery that is Thomas, are his actions, his words, his moods and those damn clipped answers.

So as I drove along with my husband and dreamed of having my little wish come true, I resigned myself to waiting it out and hoping that the clouds around Thomas are just a passing storm and not a threat of something worse like a tornado or rain-created catastrophic flood.

Tuesday, July 29, 2014

Bye Bye Clozaril, Hello "Good Friend" Schizophrenia



It's been a while, or it seems to me it has, since I have talked about Thomas. Part of it has been because he's been doing ok for the most part. The other part, of course, was that I was caught up in my own pain that I felt there were other things that needed to be said. But here I am now, doing better, and I think Thomas deserves the spotlight right now.

So, the last time he saw Dr. N. the two of them decided that Thomas should decrease his clozaril some more. Granted it was only 12.5mg (leaving him now at 25 mg at night) but it seems to have made a difference that isn't good. For as much as I hated the clozaril in the beginning because it didn't seem to be working, it now seems that decreasing the dose has its own sort of problems.

To begin with, it seems that little 12.5 mg decrease has completely ruined his sleep patterns. This is weird to me because when he decreased it by 12.5 the last time he did fine. But since this last decrease he has emerged from his room every morning slightly agitated, tired and distant. I had stopped checking in with him about his night for a while because it seemed like he was doing fine but then these last few days made me wonder how fine he is. His chief complaint is that he doesn't feel like he's getting any sleep. He says he sleeps but that he wakes up tired like he didn't sleep at all.

WARNING! WARNING! WARNING!

That is what I heard in that because we have been here before. The nights of tossing and turning like this were precursors to worse problems and I don't like that I am hearing this complaint again. So I asked him yesterday what he wanted to do. I gave him the option of me emailing Dr. N. and letting him know and seeing if he had any suggestions and the other choice was to ride it out for 2 weeks until we see him in person again. Thomas considered his choices for a minute and decided he wanted to ride it out. Okay, that's his choice, so now what?

Accompanying the rotten nights of sleep has been an increase in the need for hugs. We went along there for a week or so where he never asked for them and then suddenly, as part of this whole not sleeping well issue, he needs more hugs. I check in with him and ask him if he has any other symptoms going on and he denies having any. I have to take that at face value because I can't get inside of his head to find out for sure.

Except there is that "disturbance in the force" again.

Oh yes, I love that feeling.

Yeah, not really.

It casts such a heavy pall around him and in my gut because it is in these times that something is definitely wrong but neither he nor I can name it. In these times he doesn't even feel the disturbance at all leaving me with my mother's instinct to figure things out.

So, I'm left with the uneasy feeling right now that something isn't right. It is times like these that all I can do is be patient, how ever painful that is to be as his mom when he's obviously struggling. I always feel like sitting back and waiting (essentially) for things to get worse feels wrong. I have always been proactive in his care but these moments in between the good times and the bad ones, are cause for a lot of little alarm bells with zero plan of attack.

Now we just get on the slow moving train, buckle up, and wait and see where it goes. Going off of a medication that seemed to be really helping things in concert with the Latuda seems kind of reckless to me but it's not my choice, nor is it my body, so my job will be to be his mom and be at the ready, when those damn demons rear their ugly head again.

Monday, July 28, 2014

She Saved My Life



This post today goes out to my wonderful friend Naomi Haskell and to others like her that are here on my page or anywhere in the world.

On Saturday I reached a very very dark place. With my depression gripping my soul, I forced myself to take a shower because I knew I had to force myself to get moving even though I felt horrible. I stood in that shower crying and holding my gut as I sank even deeper at a very rapid pace. By the time I turned the water off I could barely breathe and my thoughts were running my heart and soul. I stood and looked in the mirror and shook my head in disgust at myself as I looked as my despairing face and felt like I was more alone than ever. I won't lie to you, the thoughts of ending my life had finally taken root in my mind and I felt like I was fighting for my life standing there in that mirror trying to decide what to do. Something told me to reach out to someone and I fought that because I knew if I uttered the words that were swimming around in my head that I would scare someone. So, for a moment, I hesitated.

Then it came to me. My friend Naomi, who I had met through contacting her after reading an article about her and her son who is living with schizophrenia, is the strongest, most loving, no nonsense, tell-it-like-it-is person in my life. She's been through hell and back herself more than once and I knew, if I could just get myself to reach out to her, that she would be the one with the magic words to help me. With so many tears in my eyes that I couldn't see straight, I sat down at my computer and sent her a message. I wrote and wrote and unleashed a message that was scattered but I hoped she would understand it. Within moments she responded to me and told me to give her a minute to process what I had said and to write back to me.

What came back was BY FAR the MOST PERFECT thing she could have ever written and true to form she pulled no punches and she laid out the truth to me about what she felt I needed to do to save myself. I know she was worried that she had over-stepped but what she wrote was EXACTLY what I needed to hear. From there we chatted a while longer and I admitted to her how far I had sunk and this woman, seemingly unafraid of my darkness, lit a match and then a lantern in my darkness. My heart was still broken but I had decided that I needed to continue to live and it was Naomi who helped me find my way there.

One of the things that she reminded me of were all of the responsibilities that I had to Thomas. She pointed out that there were worse case scenarios far beyond what I was living in and she reminded me that I still have my boy and that he's doing well and he's still on this earth beside me. She told me about experiences from her own life with her son and in doing so reminded me of my entire life's mission and that is to save my boy wherever I could.

In the end, the gifts she gave me, the gift of her time, her love, her uncensored words, were exactly what I needed to hear. In the end, when I had just come from my deepest, darkest depths, it was Naomi who single-handedly and with grit, saved my life, and in doing so saved the life of my boy by reminding me that he was my reason to be. With me gone, Thomas would have had a life unimaginable and the deepest wound, far deeper than I felt in my own soul, would have been the legacy and the pain and the abandonment I would leave for Thomas.

I write this today as a thank you to Naomi for what she did for me and I write this today to thank those of you out there who have been there yourselves and saved someone else's life. Beyond that, I write this because I want to emphasize to those of you who, like me, feel alone beyond measure and feel like you are at the end, to REACH OUT. Do it even if you can't see straight through your tears, even if your gut is hurting and breathing is no longer reflex, it's a choice you have to make with every lung full of air and even if you have sunk so low that your depression has convinced you nobody cares. There are amazing people out there like my Naomi and they have hearts of gold and a gift of words that can change everything about that dark place you might find yourself in. REACH OUT, especially if you are a caregiver of someone with schizophrenia or any other mental health or physical health issue. Your life means something to those around you and your value to the world, no matter how small your footprint is, is immeasurable.

Saturday, July 26, 2014

"Just Give Up Hope. It's No Use"



It never ceases to amaze me when after writing something like I wrote yesterday, I find people in the same boat as me or people willing to help me or each other. I am truly blessed to have you all here and to be able to share my experiences with and to hear your own honest accounts of what you go through and how you deal with it.

You. Give. Me. Hope.

I want to speak to the idea of hope right now. This morning I had an exchange with my mom about her leaving that was hard and brought me to tears. The content of that exchange isn't important. What is important though is that I was broken hearted, depressed, crying and just generally in a bad place. My husband, Dan, said to me,

"How long is this going to go on? Is this going to go on the rest of our lives? Do I need to prepare myself for you to be depressed and possibly kill yourself in the years to come because you can't stop being depressed?"

I explained to him, as I have a thousand times, that my pain just from losing my dad alone is valid and it's going to be here a while but there is also the big unknown of where Thomas' illness will lead us and yes, losing my mom being around me is going to make me sad for a while. I told him that he just doesn't understand how I feel because he has never lost someone he loved.

He told me that I needed to just let it all go and to give up hope that things are going to be different.

Give up hope?

Really?

Wow. Give up hope. You mean give up the one and only thing that keeps me moving forward all the time? Give up on believing that what I am doing with my blog is a good thing and that it's helping others? Give up on my dreams of being a writer even as I was just asked the other day to write another guest blog for PsychCentral.com? Give up hope?

Sorry, not going to happen. It's all I have. When Thomas was going through getting started on Clozaril and he was getting sicker and sicker, I had my days where I felt hopeless but did I make my life about that? No! How can you do that when it's all you have. I had to hang on to the fact that clozaril was going to be the answer if we just give it time. I watched as Thomas declined and I didn't know what his future held but I had to believe, somewhere deep down inside, that it would get better.

Then came Latuda.

I didn't know I was hoping for this new medication specifically but I knew there was an answer somewhere and now, in a little dull green 160mg pill, I have my boy back.

I can't give up hope and I never will. There will be losses but in their place there will be gains and giving up on believing in those gains just isn't in my nature. I refuse to live my life totally hopeless. Even now, as I deal with what I deal with, I am not giving up. I'm off track for sure but I'm not giving up.

So, for me his morning, it took my husband's Eeyore attitude to remind me that life, in general, is not hopeless. He gave me perspective and with that, strangely, some peace of mind. I'm not as far down that hole as I thought I was and in the face of someone I love telling me to just quit hoping altogether, I found, instead, a way to start climbing out of this hole I am in. It won't happen over night. It won't happen fast. I have a lot on my plate. But I am not giving up. Not even a little bit.

Friday, July 25, 2014

Self-Medicating Mental Illness



I don't really know what I'm going to say here or how I'm going to do it but I feel like it needs talked about. Many times I have read here on my page about people who are self-medicating their illness. I have heard alcohol thrown out there as well as marijuana and other drugs. As I spiral down into borderline bipolar psychotic depression I am becoming acutely aware of what some of you deal with with your schizophrenia and psychosis. Personal experience is the best teacher but I can tell you that while I am learning a little more about your lives through my experiences, I can't help but think that this is one school I don't want to be enrolled in.

I am acutely aware that this blog has gotten off topic a few times because I have talked about the emotional pain I am dealing with myself right now. I apologize for it as much as I can but then I think of those of you out there who have put in their time for months and even years being a caretaker while simultaneously trying to keep your own mental health under control only to find that your loved one is finally pretty stable and somehow your strength for holding your own issues at bay becomes non-existent and your own demons start to creep in. This is where I find myself a lot lately and this thread I am dangling on is fraying.

Every day I still look to Thomas to see where he is at with his own mental health. I examine him trying to keep my own bipolar colored vision clear so that my assessment of him is fair. I think I am doing a pretty decent job of it since we did sit in therapy yesterday and he reported ones and zeros on all of his scales with only one hesitation about one of his long-standing delusions that I'm sure means he's probably keeping something from his therapist and I. He gave it a one. I'll bet you it's a 4.

At any rate, apart from that I will get back to the original subject of this post. After therapy and because I had had a ROUGH day, I couldn't wait to get home and have a drink. I wanted to escape from the pain I have been dealing with lately and alcohol was that escape. I won't paint a pretty picture here because there is no beauty in doing what I do. I am not proud of it in the least but that doesn't seem to stop me either. As Thomas went to his room, I went to the freezer and found my vodka and I drank a shot of it. Then I went and turned on the music that is piped through my entire house and I went back to the kitchen where the sound of the music is at its best (go figure) and I had another drink. Nothing was helping. The pain was still there, the memories, the newly acquired paranoia (a symptom of borderline psychotic depression) were still all stacked up there in my mind. I sat down on the cushiony floor mat in my kitchen and leaned against the cabinets and sang to the music surrounding me.

Somewhere along the line I lost track of how many drinks I had but still my demons chased me. All I wanted was to be out cold, out of this life and anywhere other than a kitchen floor in a house in a town (where one of my biggest sources of pain is--that my daddy died) and in a life filled with grief and fear and anxiety and paranoia and well...you name it. I went outside and smoked my 2nd cigarette that I allow myself 2 of per day and I came inside and sat down in my living room and (let's be truthful here) I (guess) I passed out, though I call it sleeping, until my husband came home from work.

I tell you all of this because I understand the need for our loved ones with schizophrenia to self- medicate away their symptoms. I also understand you caregivers who give your heart and soul and maintain that just long enough to get your loved one on their feet before you yourself implode. Life is not easy. It's not easy to have a mental illness. It's not easy to be a caregiver for someone with a mental illness. It's not easy to have other issues (for me it's losing my daddy and now my mom moving away) on top of all of that and let's face it, life in general is not easy.

It sucks.

Now, in no way am I singing self-medication's praises. Not even a little bit. It's dangerous especially if it goes unchecked and it's deadly once you start mixing it with a cocktail of psychiatric meds like I did last night and like so many of you suffering from medicated mental illness do I play a game of Russian roulette of the worst kind because I am damaging a life that is not all my own. I am here because of Thomas, I am here FOR Thomas, I am responsible for Thomas and it will be me, hopefully sober, that will be the one that comforts him in the middle of an inevitable psychotic break.

I am not proud of the choices I make to cope with my own bipolar and grief and probably it's not the smartest thing to even talk about it in public but the truth of the matter is, I am going to keep with the original goal of this blog and I'm going to keep it real, and raw and honest. No one admits to sitting on their kitchen floor singing Taylor Swift after 3 drinks after having had a HORRIBLE day but I suspect many of you do something similar. I refuse to leave you alone out there in your kitchens or your living room chairs or in bed with the covers over your head feeling like you are alone as you look for some escape from your life that

Just. Isn't. Easy. Right. Now.

My voice is clear, it's loud (because I have an audience over 2500 people) and although it's stupid and shameful, the choices I make to solve my symptoms, they are choices I make borne of a life full of painful trials that just never seem to come to an end.

You are not alone. It may feel like that (even I feel like that in spades right now) but there are people who care and who want to help. Let them.

And now, I will start another day, try to find my footing, try to stay off of the kitchen floor and away from Taylor Swift music and I am going to try to have a better day today.

Try to do the same for yourself.

~m

Thursday, July 24, 2014

SSDI, SSI The Big Red Stamp Of Rejection

After being told that Thomas was a shoe-in for getting disability, when the letters arrived I was eager to open them. First came the SSDI letter.

The reason for that rejection is that he doesn't have enough "work credits". I had gotten mixed messages from people attached to the disability process that said he did have enough and some said he didn't. So I was never quite sure what I would get when all of this shook out. So, for now, as it stands, Thomas doesn't qualify for SSDI.

Then came the SSI envelope. It was one of those big brown ones that make you think there is a lot of information and that it's very important. Inside was a shiny folder titled "Your Supplemental Security Income Folder." "There you go," I thought. So at least he was still in the running for that. The folder contained a transcript from our conversation with social security and they were asking for corrections on it and for us to return it if it needed any. It didn't. So I put it away to wait for the next step. I didn't have to wait long because the next day another letter arrived from social security. THIS one I was nervous to open. My nerves were right and as I read the letter I realized that it was yet another rejection. C'mon people, REALLY?

As it turns out Thomas has too much money in his bank accounts. $300 more than what he's allotted to have if he were to be approved. "You have GOT TO BE KIDDING ME!" I thought. $300, that's all. Needless to say I was on the phone immediately with his advocate and I was asking her what I should do.

It turns out that the problem is that I have been paying Thomas' medical bills FOR him. Every one that rolled in I paid for. I was trying to help him because he couldn't afford to pay for them himself. As a result of that he had been able to hang on to the savings account he had collected, nickel and dime, his entire life. Now, though, it became clear that in order to get approved for SSI he is going to have to pay all of his medical bills himself. I brought his stack of bills to him and explained it all to him and told him that his savings account was going to dwindle. The disappointment in his eyes was heartbreaking. You see, he very much loves controlling his money. Everything has to go the EXACT. RIGHT. WAY. or he is uncomfortable. Well, "uncomfortable" doesn't really even describe it. He controls WHEN his paycheck gets put in the bank, HOW it gets put in the bank, THE RECEIPT he gets from putting it in the bank and just about everything else in his power to control. He is HUGHLY SUSPICIOUS of the banking system and doesn't trust it so he feels he needs to be on top of it at all times.

So, now here I was telling him that over $500 of it had to be transferred out of his savings account and immediately paid to doctor's bills. I feel absolutely HORRIBLE for him. He has had that beautiful savings account his entire life and now, right before his very eyes, it is dwindling away--fast. I tried to explain to him that if he gets SSI then he'll get his money back but that offered him no solace. He rode beside me in the car stone-faced and quiet and I just wanted to cry.

At any rate, we are now back in the game and I will get the SSI resubmitted. What irks me right now is that they stopped the whole determination process before even speaking to his doctors so they have no idea how sick he is and has been for 2 years. I have got to get them to push past this money thing so that they can see that this kid is in need of his SSI.

Tuesday, July 22, 2014

Thomas' Favorite Vacation Memory

Now, let's see if I can get back on track here.

During our recent trip it was so wonderful to watch Thomas blossom. I was so worried about how it was going to go for him socially but he had the best time with his cousins. Faisal, the cousin that is a boy and closest in age to Thomas became Thomas' friend at the cabin retreat. Because there was no TV and no WiFi or cell service, the kids were all forced to be REAL kids. You know the kind. The ones that play in the creek, splash around in the pool, hike between cabins and hang out in the rec room.

When Thomas' therapist asked him what his favorite memory of the vacation was, I was excited to hear what he had to say. He had always loved popping up a bag of microwave popcorn and going out and feeding the seagulls as they flew above him in the air and he did that very thing but that wasn't his favorite memory. It turns out that his favorite memory was playing pool in the rec room with Faisal.

This rec room became the major gathering place for all of the cousins and it was a place not unlike the rec rooms of days gone by, my childhood to be exact. Those kids spent a lot of time there playing pool and other games and we knew when we couldn't find them in our immediate area that we just had to go to the rec room and they'd be there intent on winning a game against each other.

I wondered when I discovered that Thomas' electronics wouldn't work, if he would have a problem psychologically because there were no distractions from computers and video games. It turned out being the best thing for him, making me wish that we had opportunities like that for him around here.

At the ocean he began to isolate a little bit. Faisal became withdrawn himself and the boys began to do their own thing. I watched as Faisal sunk into what appeared to be a deep depression and while it disturbed me greatly to see him like that he was a reminder of who Thomas had been for so long. I sat at the long dinner table with the boys and studied them, one being sullen and making little eye contact and saying nothing and one was active with his little brother/cousin and was playful and patient and entertaining. Best of all, out of all of those meals, Thomas had light in his eyes and engaged in the family chatter that went on.

So, when all was said and done, the trip was very good for Thomas. Apart from a little delusional behavior that I caught him in--isolating himself to watch a movie about a government leader of long ago that he idolizes and even considers himself a reincarnation of him and also placing this man's image on his home screen of his phone--he seemed ok. My opinion about the movie watching and phone home screen was that it was done as a way to shore himself up against his bio dad's opposing political beliefs, it was his way to hold on to his own beliefs. I excused it all but now that we're home I am keeping an eye on it.

In that package that Everyday Health did on schizophrenia, one of the things they talked about were the signs of relapse. The movie and home screen image feel well within their opinion of what could be a sign so I am vigilant over Thomas to some degree now wondering if it will go beyond those two things. If I had to guess though, I don't think it will. Thomas still has some of that light that I saw on vacation and he's been thoughtful (hugging me when I cry) and he's been engaging in family meals and doing his chores. I'm going to leave him alone for now, mostly because I don't have the energy to hunt for clues and live hypervigilant of all things schizophrenia

Really, right now, it seems Thomas and I have switched places because my now somewhat out of control bipolar illness is rearing its ugly head. I stand on the precipice of paranoia myself oftentimes and I fight off suicidal thoughts, self-harming behaviors, not to mention all of the lovely agitation, anger, inability to sit still and inability to sleep. I guess it IS my turn though huh? We've been at the schizophrenia thing (and my dad's dementia thing before he died) for so long that me breaking down has not been an option. Now, the house has grown silent, Thomas takes his meds, he does just about everything right and he's still successfully going to work and staying there. Now it's time for me to get help. God knows I need it right now.

Monday, July 21, 2014

After The Battle

As twilight shifts to morning and I wake to see that (thank God) the sun has risen again, I sit down here at my computer to write. This place, the words and stories I share here for you are something I have wanted to do since I was very little sitting in my room with 6 sheets of wide-ruled paper stapled together to form a book that I was writing. I dreamed of writing, of being a writer, my entire life. Now times have changed and I have a state of the art computer and a keyboard on which to write my son's story and my own. I have never stopped being amazed at the support you guys give me and it is you that keeps me going, keeps me sharing mine and Thomas' life.

So today as the sun streams hot into my office room's window reminding me that it's still here and that more importantly I'm still here and doing what I love, I try to put yesterday behind me and start to move forward again. My afternoon turned into an all-out verbal war with my mom yesterday ending with me basically being asked to leave her house. The woman that stood before me yesterday was a stranger I had never met and I was left reeling from the experience. I'm not sure why she became that woman, I'm not sure why I lost the mom that I knew and loved but somehow, in her place, this other woman who looks like my mom but acts like no one I have ever known, now occupies that house and has left me bewildered (at best) and stunned. I am taken by the fact that I have lost my daddy to a sudden, heart-breaking death and as a result my relationship with my mom became so damaged and so changed that it feels like I have lost her too. I see now, after yesterday, that it is now me, Dan and Thomas on our own in this world. The beauty that has come from this whole mess though is that after my postings yesterday, many people reached out to me and offered support and I see now that they are the ones who will become my new support network. The saying goes,

"When one door closes, a window opens."

and that is just what happened yesterday. That proverbial door slammed hard and final but the window I stand at now and look out of shows me ethereal figures waiting out there in the world for me, they are the women who reached out to me yesterday and offered me what I needed the most. I see you all and from the bottom of my heart I thank you all for writing me, for sacrificing your own privacy by offering me your phone numbers and the promise that I can call day or night no matter what. You women are the greatest gift I have received in a VERY long time and I feel very blessed to know you.

It is my hope that this will be my last posting for a while about my own personal struggles because what I deal with outside of Thomas is not what this blog is about, at least it wasn't my intention to begin with. I have been struck, though, by what settles into the cracks and holes left after a schizophrenia cycle. It isn't always light that does and I am learning that what's left afterwards is a battlefield that needs to be sorted out. You bring back the injured and the dying, you bury the ones who didn't make it through the battle and you collect the weapons of war to be put away for the next battle that will inevitably come our way. It's not a pretty picture because your world changes, you meet new people and you (painfully) lose others and you're left to examine your dirty clothes, your tattered shirt, your tousled hair and you dust off and start forward again. Sadly for me, I lost not only pieces of myself, and I am brought to the brink of death too but I am here, still, counting on each new bright sunny day to remind me that I have a second change to start over.

So please, forgive my solemn post today but I needed to write this today. The darkness I feel right now still envelopes me but I see my doctor tomorrow and I pray she has the answers I so desperately need. I will let you know (probably Wednesday) how that all went and what the end result was. I was just a stone's throw from hospitalizing myself last night so I'm hoping she will have something to offer me to keep me home with my family where I am loved. As many of you know, being warehoused on the 5th floor of a psych ward for 4 days with indifferent attendants and no therapy and a filthy sitting room with no coffee to drink and no one to talk to, is not the place I need to be.

I love you all. I love you for being here. I love you for the support you have given me the last couple of days and the support you have given Thomas and I when he was struggling. You are amazing AMAZING people and I am truly blessed to have you all here with me.

Sunday, July 20, 2014

Thomas Is Great, Me, Not So Much

I thought I'd take today to say a couple of things about what is going on with me. Yesterday I ambushed one of my support groups I created to go with this page and told them all how much I hate the world right now. Bless their hearts they told me how strong I am. The truth of the matter is, I don't feel strong at all. Not even a little bit. I think two things are contributing to my problem. One being that on vacation my mom announced that she's moving clear across the country to live near my sister after having lived by me for years and years and who has been my BIGGEST SUPPORT in all that time. I don't know what I will do without her. This has filled me with powerful and confused feelings none of which I seem to be able to keep in check. Dan is feeling beaten down because I am not a pleasant person to be around (his words are: "You are a NIGHTMARE to be around right now") because I am on a hairtrigger with my anger and agitation. I think even Thomas is a little afraid to approach me right now.

Then second, I think the antidepressant I was put on is backfiring on me, as well it should. I have bipolar disorder and the worst thing you can do for someone who is bipolar is to put them on an antidepressant because it actually causes mania in that person. As I've said before my mania's aren't the happy kind, they look exactly like what I am going through now, an inability to handle stress, easily angered, impatient, agitated, unable to sleep etc. etc. etc.

The problem is becoming bigger and bigger as I am now starting to have suicidal and even a little bit of homicidal thoughts. They just pop in my mind like a chipmunk peeking out of his hole to check out his surroundings but they are there and they scare me a great deal. With my current state of mind, if this goes on too long, chances are I will act on them and if history shows me anything, I will more most likely end up harming myself.

With all of the stress in my life anyway, losing my dad and now losing my mom and now thinking my meds are backfiring, I am in a terrible place and I need help. I spend every day a shell trying to act like I'm fine and capable and that I can go on living as if everything is find but that usually lasts about 2 hours after I wake up and then it all goes to crap.

So, since I ambushed my support group I felt like I should clue you all in too. You guys really seem to care about Thomas and even me too and I feel like being candid with you and raw, paints an accurate picture of a family suffering from not just schizophrenia but also bipolar too not to mention intractable grief.

My plan for today is to keep on my proverbial feet mentally and see if I can get through a day without going insane. I have prepared the days postings for you already that will include inspiration and things to think about. I hope you like them.

Have a good day everyone! I will try my level best to do the same.

Friday, July 18, 2014

The Wedge Between Them

Throughout this trip I watched Thomas with his biological dad. Their first meeting had been awkward at best and in a way it was very hard to witness. I'm not sure what I had hoped for that moment because I had always felt it wasn't mine to control or to try to repair. They had been separated by years of little communication and many unanswered questions. Thomas, now 19, was an adult, fully cognizant of the meaning of their reunion and long before this, had made up his mind about his bio dad.

What had driven them apart in Thomas' mind was not what I believe were the reasons his bio dad had. I can only imagine, by putting myself in his bio dad's place, that he felt guilt for having let the relationship go. I will never know his side because we didn't have that talk but I know this man has a heart and I know the meeting and the subsequent awkwardness between them during the entire trip, probably broke his heart. In the end though what drove them apart was a gesture that his bio dad had made to Thomas a year or so before.

Thomas is very solid in his political beliefs. They're different than average and perhaps a bit extreme, held together with delusional thinking. He is vocal about them in his social media and at one point his bio dad became aware of them. With his beliefs falling at the complete opposite end of the spectrum and with 23 years more experience to back them, his bio dad saw Thomas as a young kid in need of an education, a broadening of horizons so-to-speak. In his zeal, he purchased and sent a book covering his own political beliefs and in the message attached to the book, he told Thomas that he needed to look at different political ideals so that he could be better educated about the world. It was no surprise that this message and gift from a man who had little to do with his life, set Thomas off in an angry tailspin that ended in a proclamation on Facebook that he was never going to change what he believed and that this was who he was.

He was mad.

In the prime of his schizophrenia, when he was his most sick, his bio dad and done the worst thing he could have done and that was to directly and forcefully and like an ambush, challenge Thomas' delusional beliefs. Without a loving history like Thomas has with me for example, he saw this gesture as a direct attack and as we all know from experience, probably the worst thing you can do to a person in the middle of psychosis is to challenge them. The mistake (?) was a fatal one on his bio dad's part and that set the stage for any future interactions.

With all of that behind him, Thomas came to this trip and to this reunion still harboring a smoldering anger that he wasn't about to let go of. So, sadly, there was no potential for a sustained repair to the relationship. Thomas had had months, at least a year, to hang on to the book and the message he had received and to be mad that this man, who had played little part in his life, had had the gall to open a dialogue with him about the very thing he holds most dear to his heart with a ferocity that we, here, all know and recognize in our own delusional loved ones.

And so it went, the reunion was marred by this thing that had been done and while the two of them found tentative footing around each other, the reunion his bio dad had hoped for, the reunion that a part of my heart had hoped for was just not going to come to pass. In the end, bio son and bio dad parted strangers, still, and when asked in therapy yesterday about his relationship with his bio dad and how it went on the trip, Thomas answered,

"We just don't have anything in common. We are on opposite ends of the spectrum."

His therapist attempted to clarify what Thomas meant and Thomas made it clear that the wedge that was securely between himself and his bio dad was a difference in political beliefs, borne and bred from a history of abandonment, an inability on the part of his bio dad to understand schizophrenia and it's inner workings, and a perhaps well-meaning gesture on the part of his bio dad to educate Thomas on other political perspectives.

What we wanted, those of us who are parents and grandparents to this child who had been abandoned by his bio dad, were tempered with awkward moments we witnessed throughout the trip that indicated that hope for a sustained repair in the relationship was just not possible. In the end, bio dad and bio son said an amicable goodbye and each returned to their lives and their beliefs they hold so dear to their hearts.

Thursday, July 17, 2014

The Day He Said Goodbye

It was a moment, really, endless moments, that I couldn't have prepared myself for. I recognized my own grief and what the day would mean for myself as I said goodbye to my daddy and set him free but being in Thomas' presence as he said his own goodbye was life altering and I was deeply honored to have been his mom and to have been there for him in this most personal and private goodbye.

The day began early with my mom, Dan (my husband) and myself, waking at dawn to a beautiful day that greeted us with sunshine filtering through scrub pine forests, the smell of the trees all around, the babbling of the creek that ran past our cabin and the dew on the grass as Dan and I walked through it to meet my mom at her cabin. The plan was to go ahead of everyone that day and scout out a beautiful and private place along the river to say goodbye to my daddy.

We drove through the early morning light along a dirt road and parked at the fish hatchery that would serve as our trailhead to the private, almost holy place that we would gather at as a family and say our last goodbyes. We walked down the trail and within minutes my mom found the place that she felt my daddy would have been happy to be his final resting place and we three stood there in silence, tears rolling down my face and my mom's, and we gazed out at the river, so ice blue, wild and so representative of my daddy and his life and the work he did through much of it. You see, he worked for the USGS and his job was to measure rivers to determine their flow rate, their depth and a myriad other things I didn't understand. He had spent years wading into wild waters, high in the mountains of the western United States, loving the solace he found in his job because he was always alone with nature. It was there he spent his life and it would be there, at his request, that he would spend eternity.

My mom, Dan and myself returned to camp and we gathered for a big family breakfast with us three and my sister, her husband, and seven of her children. As we ate we talked about my daddy and we prepared for what was ahead of us that morning.

By mid morning we were all finally gathered together in the holy place we had found for my daddy. The hike in had been somber as my mom carried my daddy's ashes in his favorite backpack he had worn most of his life to hike in the mountains and as we all looked down the trail to the place where we would say goodbye. My nephew Faisal, an amazing photographer and videographer, quietly and reverently moved among the family making a memory of the ceremony in photography that we would all have for the rest of our lives. Then the time came to say goodbye and we gathered together as my mom removed my daddy's urn from his backpack and opened it for the final time, tears of grief rolling down her face and choking her speech.

She began with the little ones, the children my daddy had barely known, and she handed them each a small cup of ashes and told them about their grandpa and they walked to the river and released him in to the water at the edges of the bank. I turned to Thomas and looked at him and he stood there completely consumed with emotion. Tears rolled down his face and he struggled to wipe his running nose. I went and got him a Kleenex and handed it to him and I reached out to him and hugged him. We clung to each other tightly as I whispered to him,

"It's okay kiddo, it's okay."

It then became his turn to take a cup of ashes and say his last goodbye. He stood over the urn as my mom scooped some ashes out and quiet tears ran down his cheeks. He carefully took the ashes and turned toward the wild, rushing water and walked to the edge of the bank. He stood for a moment saying something I couldn't hear over the roar of the rapids and he leaned out over the water and threw his beloved grandpa's ashes out into the water. He walked back to me and reached out for me in a desperate, emotion-filled need to be comforted and again I found myself holding my very emotional, normally stoic young man in my arms as he sobbed. Saying goodbye to his grandpa had touched him much deeper than I could ever have imagined. I was honored to be with him in these moments and to comfort him in what had now become the most intense, life-altering moment of his life.

Then it became my turn to take a cup of my dad's ashes to the edge of the water. I cried during the short walk to the edge and I stood there and looked out over the beautiful water and around at the magnificent, fragrant trees and I took this moment with nature to remember my dad. All of the things I wanted to say at this moment escaped me so I shouted into the sound of the water's rapids,

"I LOVE YOU DADDY! I MISS YOU."

and then quietly I said,

"Goodbye daddy."

and then I released my cup of my daddy's ashes with all of my might into the morning breeze and into the river.

There it was, the final goodbye to my daddy's remains. I knew with all of my heart we had done exactly what he had wanted and I was honored to have been able to be a part of his final wishes but now...he was gone.

Then came time to do our readings. Thomas took his drawing he had done for his grandpa and he stood there not sure what to do. I asked him if he wanted to read his message to his grandpa out loud to the family and understandably he didn't so I told him he should go to the river and read the message to his grandpa and then let the drawing go into the river. Again he walked to the water's edge and quietly, drowned out by the sound of the rapids, he read his final letter to his grandpa. He bent down and gently released the drawing into the river and I walked up to him and again held him tightly both of us wracked with grief.

I had also had a small memorial plaque made, engraved with my daddy's name, his birth and death date and the words,

"At peace and forever one with the river wild."

Thomas and I stood together in a quiet moment shared between us and we stared down at the plaque in my hand.

"What do you think we should do with it kiddo?"

I asked him.

"Should we just set it over there on the river's edge?"

I could just tell he didn't think that was right so I asked him,

"What do you think we should do?"

He wanted to fling it out into the middle of the river but that didn't feel quite right to me so together we compromised, he carried it down to the water's edge and then together we set it on the surface of the water, released it and watched as it sank to the bottom, immortalizing my daddy, his grandpa, in this river, forever.

With everyone now having said their goodbyes, we hiked back up the trail, tears rolling down our faces but with a certain joyful chatter amongst each other about what we had just done in honoring our patriarch. As we emerged onto the gravel road we walked out to the middle of the bridge and looked over the side at the roaring waters below, my daddy's final resting place. Then we gathered together on the bridge as a family and we took a portrait of the family we had now become with my daddy's spirit all around us.

In the end, what had mattered most to me apart from honoring my daddy's last wishes, were the many moments I found myself holding my son, comforting him as he grieved a most heartfelt deep loss, and standing beside him at the river's edge as he and I together released the plaque, my daddy's memory set in stone, into the water at the river's edge. In those quiet moments, in our private mom and son world, we found each other in a way neither of us knew existed in the other. That day, July 9th, 2014, I said goodbye to my daddy and Thomas said goodbye to his beloved grandpa but in that goodbye my daddy left Thomas and I a gift, a world where we knew just he and I existed together alone and would forevermore. A world where come what may, whatever was thrown our direction with this illness schizophrenia, we would be able to handle it together.

Thursday, July 03, 2014

Capturing A Moment In Time

Today will be a busy day. I sit here tired from my walk/run and with a new wave of depression and grief about my dad that has hit me again in the last couple of days after finding an 18 minute video of my family, but most especially it included my dad, at our last Christmas together. I sat and watched mesmerized every movement he made and listened to every word he said and I wished more than anything that that morning the video was taken that I had known this would be his last Christmas. I would have had the camera just on him and I would have talked to him more. My friend Steve told me that I had been given a gift by my dad by finding that video so I feel lucky that I happened upon it.

Also in that video was Thomas opening all of his Christmas presents. This was the Christmas that less than two months before he had been released from his second hospitalization with his brand new diagnosis of paranoid schizophrenia. He was happy that day, dressed all in solid white--a strange phase he went through that I never understood--and his hair was long and ragged. Seeing him brought back the memories of the months before Christmas and then the really horrible months after it that culminated in his third hospitalization. Pictures and videos catch such moments in time, moments that we will never get back. If I have any words of advice for you from my finding that video, it would be to remind you to take pictures and especially videos. Capture the LIFE of your loved ones because it won't always been like that.

Wow. I'm a real bummer today. Sorry about that.

Well, the plan for the day is to drive the long drive to see Dr. N. and then rush home to our phone appointment with Social Security Disability.gov and then head over to Thomas' regular therapy. It'll be quite a busy day full of doctors and business. I am nervous about the Disability call because I don't know what it is they want from Thomas or I. We're flying blind and I hate that.

What needs to be discussed with Dr. N., though, is Thomas' complete about face concerning his tolerance to his meds. In the last few days he has been having "reactions" to it as if we have increased the dosages of everything. In the mornings he's dizzy, tired, hot but with a cold sweat and at night, like last night, he is in bed at 6:30 sleeping already (his normal bedtime is 10). I'm mystified about why all of this is happening to him. Hopefully Dr. N. has some answers because what is happening to Thomas kind of scares me a little bit. Probably it does because we are about to leave on a 10 day trip with no doctors around and I just don't want anything to go wrong. I already have a bad feeling about this trip so hopefully that feeling is unfounded and everything goes smoothly.

Tuesday, July 01, 2014

The Vacation(?) Approaches

To begin with, I put a question mark after "vacation" because I am not sure how this whole thing is going to play out. I have told you--but will briefly tell it again in a minute--what this vacation is about and what it means for Thomas and for myself.

The sole reason for the upcoming trip (beginning next Tuesday) is to spread my dad's ashes in the place he chose years ago. Thomas said he was never close to his grandpa so the act of spreading the ashes won't be too sad for him. I, on the other hand, am dreading it. I have a strange(?) attachment to my dad's ashes in that I still see them as part of him and leaving him somewhere far from here is kind of hard. I know his spirit is free elsewhere and that the ashes are just ashes but somehow I have trouble sometimes separating the two. Then we will move as a family to the ocean for 6 days to all be together. My dad would have wanted that for us all. Now, by family, I mean myself, Dan (my husband), Thomas, My sister, Thomas' biological dad that he's had zero contact with for a long time and then my sister and ex-husband's 7 (of 8) kids. Needless to say, it's going to be interesting. I personally have mixed feelings about seeing my ex-husband again (it's been 5 years I think) and I know that Thomas is having mixed feelings too. Mixed....well, maybe that's the wrong word for it. He says he is "curious" about his biological dad. He can't put into words what that means so I can't speak to exactly what he's feeling. This trip has potential to be very healing or a huge disaster for Thomas. Right now he is excited because he wants to see his cousins and half brothers and sisters but that's where the excitement begins and ends. On the trip I will be posting every day here just to let you guys know how it's all going. At the very least it all should be very interesting.

As far as lately for Thomas, he's been pretty good. His work hours were cut back this week so he's happy about that. I discovered the source of his depression and anger about work is that he's missing the chance to hang out with friends. That will be something he'll have to learn to deal with since he is an adult and as an adult, he has responsibilities that do not include Air Soft BB gun fights with his friends. Apart from that, yesterday he asked me if he could go to his friend Cole's house (remember the "gun house" I told you about?). I expressed my reservations about that and Cole came to our house instead. Thank God. At least here I can keep an eye on him and at least here there are no guns.

The other thing Thomas has been dealing with is an odd reaction to meds in the morning. He has always done fine with taking them but then 4 days ago he took them and began to eat breakfast then suddenly pushed back his table and complained of dizziness and sweating and tiredness and I went over to him and he was both hot and cold, sweaty, and dazed looking. I'm not sure what that's about. I've never known side effects to finally go away only to come back weeks later out of the blue. Luckily Thursday we go see Dr. N. so I'll check with him and see what he thinks is going on.

So, that's about it for Thomas and I. I'm pleased that he's doing good and I hope that continues for a while. I have actually started to relax a little bit as far as worrying about breakthrough schizophrenia symptoms. The impending trip could change all of that but I choose to hope for all good things to come of that trip.

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