Saturday, June 29, 2013

I Forgot To Ask

Here I am this morning holding my breath and waiting for my son to get up. You might ask why I'm back holding my breath again. Well, that "disease of hope" I spoke of yesterday is now snickering over there in the corner of my heart and mind because of what I learned yesterday. Because, based on my life experiences in the last year, there is no rest for the weary. I find that this nasty illness hasn't moved far from my son's mind after all. That's not to say I believed he was cured, (ok, a little tiny microscopic naïve part of me did) it's just that I thought we'd finally found a medication that was going to work but apparently I thought wrong.

My boy...

(note here that I refer to him as my boy when I discover things like what I'm going to tell you and I feel like he is my helpless child in need of his mom and proper and immediate care) in the car yesterday after work and he was beaten down with tiredness. The work he had done that day was very mentally taxing and he was at his wits end, mentally speaking. All he wanted was to get home and go to bed. That in and of itself worried me because I know too much pressure and too much stress can worsen his illness. I told him to really pay close attention to how he's feeling as far as his schizophrenia goes and to let me know what he notices especially if there are changes. Then, as it always does with this HATEFUL ILLNESS, I was hit with the thing I wasn't expecting because I was busy languishing in my hopeful feelings.

"Mom? You didn't ask me this morning how my night was." he said.

"Oh I'm sorry kiddo, how was your night last night? Was everything ok?" I asked.

Bear in mind EVERY MORNING since this all began a couple months ago, I have, without fail, asked him how his night was. Well, yesterday I didn't and I'm kicking myself now for not having asked.

"Well mom, I'm hearing a woman screaming now." he said.

"You are? Can you tell me more about it?"

"It sounds like she's being murdered, like in a horror movie."

At this point I've stopped breathing and began the process of shutting all emotion down so as not to worry him. I began asking questions about it. Long story short, this is a real voice that he hears loud and clear and it's scaring him to death.

Terrific. Just freakin' TERRIFIC. What is with this illness?!?!? Can't my kid catch even one break?!?!? Can't he have a couple weeks off? Can't he just be done with this once and for all? PLEASE?!?!? I would give anything to take this away from him.

So, here I sit this morning in a quiet house, holding my breath, waiting for him to wake up, and PRAYING that the woman in his head wasn't screaming last night and that he'll wake refreshed and cheery and ready for the day.

One can hope right?

Friday, June 28, 2013

What's Happening In Hollywood

I just dropped Thomas at work and I can't tell you enough what joy it brings me to do that. Yesterday he worked in the wood shop with "Doc" and he really seems to come away from that type of work with a sense of pride and accomplishment. Today he exited the car in a cheery mood and I tossed an "I love you kiddo!" out after him not expecting but certainly hoping for a response and he came back with "I love you too mom!". What a way to start the day!!!!

Guys, I can't believe this is happening! After what we have been through in the last year I really didn't think that Thomas would find peace for such a sustained period of time. My marker for how he's doing is how willingly he takes his meds (he's on top of it every day and has his own, albeit quirky, routine for taking it) and how the spot in his pill case for the nighttime anti-anxiety pill remains filled with that little white pill. This is so good. It's all so very very good.

I do have a bit of a "disease of hope" so to speak where I tend to overlook things that I probably should be paying attention to with him in favor of only seeing the good stuff but frankly I've come down with "the fever" and don't feel terribly motivated to treat the symptoms. I know it's not the most responsible thing but you know what?? We need a break. He needs a break from my constant vigilance, the concerned looks, the incessant questions and I need a break to B-R-E-A-T-H-E for just a little bit. I actually put away the volumes of books and articles and hospital records and "the binder", which I'll tell you about sometime, that have haunted me for months by sitting by my chair forever chastising me for not reading more RIGHT NOW...

"Hurry hurry hurry, learn it all NOW or the worst possible thing could happen if you don't."

That's what I've told myself every time I've looked at "the pile".

Yesterday I put it away. It is now all on a shelf in the bedroom, not too far out of awareness, but it's off of the table by my chair replaced by a gossip magazine, my tablet and a seafoam green journal with a glass vase full of every color Sharpie marker on the planet all in the hopes that I can reclaim my life for just a little while.

So, if I disappear for a day or so here and there it's because I'm beginning to reclaim my life. It's been more than a year since this all began. I've held my breath for over a year, I've lost touch with the real world and most important of all, I don't know what's happening in Hollywood right now with my favorite stars! LOL It's time to read about what REALLY matters.

Wednesday, June 26, 2013

The Importance of Support Systems

I am writing this today mostly because I am really missing my sister right now. She has been here with me by my side to offer loving support to Thomas and I and through a lot of the work it has taken to get Thomas situated with care and insurance. I am writing, too, because I want to point out how having a good family support system is so important when you or a loved one has this illness. Let me tell you a quick story:

Back in October when Thomas had to be hospitalized for the first time, my sister happened to be here in town helping me with other family crises. In the middle of those things, Thomas needed help too and she was there by my side and by Thomas's side from the moment we found out that Thomas was struggling, right through to when he was released from the hospital the first time. Admittedly I wasn't on my game when all of this transpired. I was bogged down in other family stuff, as was she, and it took the two of us to orchestrate Thomas's hospitalization and manage his continued care while in there.

My sister went with Thomas and I to the E.R. and sat in the waiting room with us and while I couldn't find the right words to help the situation, she was a rock and comforted Thomas and I both while we waited for him to be seen. She also managed the calls and texts that needed to be sent out. Once inside the cold, impersonal E.R. she sat there and joked with Thomas telling stories about her 8 kids and their shenanigans and when the conversation died down she looked around the room and zeroed in on some purple exam gloves. I'll never forget watching what transpired next. All with great comic timing she fought with blowing the glove up and then whipped out a black Sharpie marker and proceeded to decorate the now purple rubber chicken. She had both Thomas and I laughing and in those moments I couldn't have been more grateful for her presence.

When the doctor came in, when Thomas or I couldn't find the words to express what was going on with him, she quietly and confidently filled in the missing details and together as a team we got Thomas admitted to the hospital to essentially save his life (he was suicidal at the time). Once up on the psych ward her no-nonsense attitude and calm, determined mind got us through the piles of paperwork and she made sure Thomas's rights and my rights as his mom were intact. She stood with me as we were leaving the floor and together with me, helped the nurses understand that Thomas was hallucinating (among other things) and needed a thorough psych exam. Once in the elevator, I broke down in despair and with her strong but loving demeanor she helped me get myself together before we reached the first floor. I was grateful for her ability to calm my inner storm because facing the people that greeted us as the doors opened on that floor, with tears flowing down my face, wasn't what I wanted to have happen.

I couldn't have done any of it without her. In the time that he was hospitalized, she fought hospital staff and the insurance company to get Thomas the best care, with a ferocity I couldn't have manifested in my grief. She was truly amazing. Since then, with each subsequent E.R. visit both Thomas and I have talked about how much we miss her company and those silly rubber chickens decorated with a deftly produced Sharpie marker. Even in her absence, her presence and support is felt.

So, I can't emphasize enough how important it is to have someone in your corner when dealing with all things schizophrenia (lonely moments in the E.R., filling out forms, managing care, fighting insurance companies etc.).

I love you sista and I am forever grateful for you.

Tuesday, June 25, 2013

His First Full Day Of Work

Hi everyone! I'm sorry I disappeared for a day but my father's siblings came into town and I hadn't seen them in years so I spent my day there with them. But I'm back now.

Thomas worked a full day yesterday. His first one! He got in the car after work beaten down from having spent the whole day on his feet and I couldn't help but tell him:

"Welcome to full time employment."...

I patted his leg and told him to hang in there for this program and perhaps when he was done training he'll get a job where he's not always on his feet. I'm trying not to make too many promises about the outside world because I don't know what that is going to look like for him.

His biggest complaint seems to be that he doesn't get to hang out with his friends anymore. I had to remind him that last year at this time all of his friends had jobs and he was sitting around. I'll be happy when his peers lives sort out into what they're going to do with their lives after high school so Thomas can settle into his life.

His mood seems really good, there's a bit of what I'll call a creeping depression but I'm trying to figure out if that's just normal or something I need to worry about. I'm going with that it's normal but I'm keeping an eye on it. Depression I can do. Depression is familiar to me both in him and in myself and while it's a serious illness, after what I've just been through with Thomas, it seems very manageable. That's really all we need right now is manageable illnesses. Hopefully we're getting a break from the chaos for a while.

Sunday, June 23, 2013

These Are The Good Days

I've got to say that life around here with Thomas is becoming very uninteresting. Back during his recent hospitalization and everything leading up to it, through all of the bad news about how he'll never change, he'll never get well, how I better "brace myself" for the worst, what I couldn't see while I was in the middle of it all is that there truly will be good days too. I had gotten the speech countless times that there will be good and bad days and all my broken heart saw were all of the bad days piling up one on top of another even though the good days were creeping in slowly unnoticed. As my world started to slow its chaotic, relentless spinning, all I could see was the big question "how long till the next episode?"

Today I am taking stock of my life, I mean REALLY taking stock, and I see now that lately my heart has beat steadily in time with the calm descending upon this house. If I step out of my life, out from behind the still healing wounds I bear from this last fight through hell with Thomas, I do see that things are ok. These are the good days that they talked about and my focus now for a while is going to be on each moment of peace. I'm not going to wait for the next storm, the other shoe to drop, or any other negativity to reach in and grab hold, instead I'm going to revel in the moments we are given now and be thankful for what is now before us.

May we find peace, may you all find peace in the good moments, whether they are for just a couple minutes in time, a smile, a fearless moment, or a brave stint out beyond the walls of your safe place. My love and thoughts are with you.

Saturday, June 22, 2013


It's quiet here. No sounds but the birds outside the open windows and Thomas's vibrating alerts on his phone (which are making me a little bit crazy right now LOL). Thomas had a good night (a few of them actually) and he's plugged into his tablet watching videos and eating breakfast right now. I'm saying nothing else right now because I feel as if my moving or making a sound might scatter the happy and calm that is here at the moment. I'll be back later. I hope your Saturday is a good one.

Friday, June 21, 2013

Standing For What's Right

It's a cool and rainy day here today and as I was taking Thomas to work just now I noticed that he was in a short sleeve shirt. I asked him if he would be warm enough if they had him work outside and this is what he told me:

"I probably won't be going outside anymore to work because I told my manager I wasn't going to ride in the van when the driver is talking on the p
hone while he's driving."

I've got to say that I am impressed. My normally very quiet, non-confrontational son stood up for what he believed in, and to an authority figure no less. He has several very strong (sometimes over the top in their ferocity) morals and values and he'll fight for them. I'm just surprised to hear that he did that in his work situation. I suppose there's no reason to think he wouldn't do that but he's never been in a job environment where he could apply his beliefs so I've never seen it in action in this situation.

I'm very proud of him. He very well may be his own best advocate in the years to come. I'd love to see him out there on the front lines with people helping fight the stigma of schizophrenia.

Go Thomas!!!

Thursday, June 20, 2013

On The Hunt

For a while now I've wanted to do some reading on the theme of my son's most recent and biggest ever and most debilitating delusion/hallucination that finally landed him in the hospital. What's stopped me is what I would find once I started reading. Admittedly I can be easily creeped out by otherworldly things and while I can keep a grip on reality, it doesn't mean I don't want to avoid these sorts of things if at all possible.

So off I went on the hunt the other day with my proverbial armor on (this theme isn't going to take down 2 of us) and what I found is disturbing. As in all things internet related, once you start looking you are led down a rabbit hole and everywhere you turn is some new facet or understanding or TRAP to make you believe these things are real. If you don't go in with a healthy mind and frankly, some courage, then it's very easy to get wrapped up in the fake reality that people have put out there to suck someone in to believing these things are real.

What concerned me most is that the way things are written is a bit like a broken circle. While you go around from fact to fact you are brought back to the beginning but just left of center of the it. This is where someone with schizophrenia, like my son, might fall into the trap and the reality some internet trolls have painted, easily becomes Thomas's reality.

They're good, the "they" being the people that feed this theme and complicate it, and thanks to Photoshop and excellent creative writing even a normally functioning person not fully on guard can see where this could be believable.

Here is my concern for my son. This circular trail (someone wrote down exactly what happens so I was able to better understand it) leads an unhealthy mind round and round with the goal being to drive the person into a corner and subsequently insane. While this might be considered a sport, and fun to some people, what they don't realize (or God forbid maybe they do) is the power that they have in their hands to ACTUALLY DRIVE SOMEONE INSANE. The writings, the pictures, the YouTube videos, the audio clips, all of it were, and still a little bit are, pulling Thomas in and just like being sucked into a whirlpool, he is spinning around and around into a black hole of insanity.

I have read about it now, I am on to them, and thankfully I am aided by a good anti-psychotic medication running through the veins of my vulnerable son and I can start to dismantle this theme for him and maybe give him some relief. No doubt "they" will keep writing and Photo Shopping and YouTubing because it must be kept alive but my hope is that my hunt has yielded a high-value piece of information with which I can arm my son so he can stay here in reality with me.

Wednesday, June 19, 2013

Shot Down

Thomas has been struggling with depression off and on lately along with some other things and I have been, what I felt was, appropriately concerned. So, we were just at the meds doc and everything Thomas and I mentioned was shot down by the doc as nothing to worry about. This always makes me feel like an idiot, like I worry too much and he's annoyed by that. I've got to say though, with the next appointment with the doc now a month out (instead of weekly meetings), I feel a bit like we've been set adrift to find our own way. After the last weeks of intense day to day vigilance over scary symptoms, hospitalization, countless emails and calls to various docs, to be floating off on our own into the afternoon, days and month ahead feels a little scary. The bright side is, the meds doc sees tentative improvement so that's good.

I'm crossing my fingers that it stays that way and continues to move in a positive direction.

Saturday, June 15, 2013

The Global Assessment of Functioning

Someone brought this up elsewhere on my page and I thought I'd share it with you because it is very interesting. There is this rating tool used to decide a person's psychological level of function when they show up in the E.R. for help and then later (in my son's case, at his 90 minute interview by the psychiatrist in the hospital). To give you an idea of how it is applied I thought I'd share my son's scores when he was seen in the E.R. in May and then during his psychiatric hospitalization a few days later. Use the table below to learn all the levels of the GAF (because it's pretty interesting--and see where you think you lie right now) and then use it to better understand Thomas based on what you have read about him in my postings.

In the E.R. he presented at a 30
and 2 days later during his second assessment he was a 45.
He left the hospital a 45 also.

Given that 100 is well-functioning this makes me sad for my son that the best they could get him to before releasing him was a 45. As for right now, and of course I'm no professional, based on what I observe in him, I would say he is now still in the 50-60 range.

Take a look:

Superior functioning in a wide rage of activities, life's problems never seem to get out of hand, is sought out by others because of his or her many qualities. No symptoms.

Absent or minimal symptoms, good functioning in all areas, interested and involved in a wide range or activities, socially effective, generally satisfied with life, no more than everyday problems or concerns.

If symptoms are present they are transient and expectable reactions to psychosocial stresses; no more than slight impairment in social, occupational, or school functioning

Some mild symptoms OR some difficulty in social, occupational, or school functioning, but generally functioning pretty well, has some meaningful interpersonal relationships.

Moderate symptoms OR any moderate difficulty in social, occupational, or school functioning.

Serious symptoms OR any serious impairment in social, occupational, or school functioning.

Some impairment in reality testing or communication OR major impairment in several areas, such as work or school, family relations, judgment, thinking, or mood.

Behavior is considered influenced by delusions or hallucinations OR serious impairment in communications or judgment OR inability to function in all areas.

Some danger or hurting self or others OR occasionally fails to maintain minimal personal hygiene OR gross impairment in communication.

Persistent danger of severely hurting self or others OR persistent inability to maintain minimum personal hygiene OR serious suicidal act with clear expectation of death.

Friday, June 14, 2013

The Sound Of Silence.

I just came home after running some early morning errands and I had left Thomas alone in the house still in bed. I was very uneasy about doing this. When I came home to a silent house I was filled with dread. Why was it so quiet? Is he ok?

Clearly I have a problem of my own brewing, maybe P.T.S.D.? I am constantly on alert now for everything. If he sleeps too much I worry, if I wake in the morning and he's still in bed and his a/c is turned off (because usually he keeps it on all the time), I worry. If he clings to me, doesn't leave my immediate area for hours at a time, I worry. If he avoids the basement (where he previously spent his entire life) for days, I worry. If I leave the house and he's still in bed when I go, I worry that he'll be scared when he wakes and finds I'm not there (even though I leave him a note). If I discover when I'm out that my phone is on silent and I don't know how long it's been that way or if Thomas has tried to reach me, I worry. When I go to bed at night and leave him alone in the house in just a pool of the light of a single lamp, I worry. If I discover that he's had so much night time anxiety that he has had to take one of his anti-anxiety pills at night while in his room, I worry. When I see him begin to fixate on some sort of scary thing/movie/YouTube, I worry.

I am constantly worrying and it has gone so far out of control that I don't know how to make it stop. I've gotten myself in such a bind that I believe if I STOP worrying that that will then be the time that something goes horribly wrong and then I wasn't here and prepared correctly to help him. It's not that I've stopped living my life, make no mistake, I am still alive and kicking. I still go places without him like I did this morning and I'm totally calm and collected about his new job and am excited for him to start and am encouraging him in every way possible, I sleep pretty decently at night (thanks in large part to an arsenal of medications to calm me and put me to sleep), I haven't quit living however LIVING, no matter what form it takes, is slowly killing me because to be alive means I am filled with worry.

I know I need to get some control of this. I know that it serves no purpose to worry. I know it doesn't do anybody any good. I know all of this but I am scared to death and I can't shake the fear.

For the record, I am now getting help but even that blessed man, who is trying SO HARD to help, sees that my situation (not just with Thomas but with other crises going on in my extended family at the same time) is just about impossible to treat. At least that's where I was left yesterday. Without some relief SOMEWHERE in my life there is no place to get a hold of to begin the ascent out of this hole.

So here I am writing to you all my--what feels like--hundredth entry about my inability to cope, my broken heart, my grief. I hope you guys will hang in there with me. I have much to contribute to your lives outside of these sad posts and I will get back on the ball here as soon as possible.

Tuesday, June 11, 2013

Safe Harbor

Thomas and I went to our meeting with vocational rehab and it went really well. The counselor outlined what to expect in the coming days and frankly it scares me to death for Thomas but he is very excited. For the life of me, it takes everything I've got to let him go free with this one. I'm doing it, I will, I'll probably come home and vomit after I drop him off for his work evaluation on Thursday but I am setting him free. It goes against the grain of what I think should be happening but if I don't let him take risks and try then what kind of mom would I be and what chance does he have to move forward in the world? I can't let my concerns hold him back from life...I REFUSE TO.

That said, what will happen is that he will get a month long work evaluation. He will work within this one building trying out new types of jobs every day from sorting bullets from our local bullet factory to folding scrubs for the hospital to taking in donated items from the loading dock and sorting them into the thrift store owned by this particular program, among other things. They will learn his strengths and weaknesses this way and then point him in the direction of places to look for jobs that suit him out in the community. He will then have to go out and get job applications and then this program will do mock interviews with him to get him prepared for the real thing and then once he finds a job they'll offer support like stepping in and offering on the job training so that the employer doesn't have to spend resources doing that. Really, the vocational rehab program does everything to insure that Thomas is successful at his job.

All of these are beautiful and AMAZING things, gifts really, and I hope that he will be successful but even driving home with him today from this meeting, I can see that he's still struggling with his illness and these are things that are going to get in his way with the job. My best friend Steve reminded me though, that he will get experience and whether he's successful or not, he will have learned something for the next time.

So, Thursday is his first day. I am wishing him the very best, I'm trying to prepare him the best that I can with what role I can play and then I am going to launch him out into the world...well, the safe harbor first...let him learn to row, or put up sails, or steer and then he can go out into the world, the wide open ocean.

Monday, June 10, 2013

What If I Die?

It hit me this morning as I spoke with my husband (Thomas's step-dad) about his life insurance that I have nothing to leave Thomas if I die. I have very little to my name and if I die, much of the personal marital property goes to my husband. Herein lies the problem.

My husband is very sweet, he's very good to me, he's stuck with me and Thomas through thick and thin but if I were
gone, he would be too and that would leave Thomas with no one to care for him and support him in the times that he needs it. It's not that he doesn't care about Thomas, it's just that we're a package deal and if I'm gone then he would be gone from everyone's (my family and Thomas's) life. This is a very hard reality to face but it's one that hit me square between the eyes this morning as we talked about his life insurance.

Before Thomas got sick, my thoughts about his future were not about providing for everything to maintain his life because he would have been capable of going to college and getting a well paying job and eventually having a wife and family. All of those things are now up in the air now that he's sick.

What do I have to leave him to provide for his future?

Who will be there for him in the middle of the night when the monsters of the illness engulf him and he's too terrified to get to the hospital?
Who will visit him in the hospital?
Who will make sure he's not so weighed down with medications that he doesn't know which end is up?
Who will make sure he doesn't end up warehoused somewhere with no one to visit him, hug him, and love him?
Who will remind him to take his meds or eat healthy or shower or brush his teeth or go to school or work or whatever?
And what if, God forbid, he just ends up on the street and there's no one to bring him in out of the cold or heat and make sure he's clothed and fed and loved?

Up until today I have never thought about what it means to take care of Thomas if I'm not here. I have so much to think about now. I know I'm not alone, I know others of you out there face similar issues but if you're like me and you haven't thought of this or you have but are still working to get things in place then know that I have now joined you on your journey. And if anybody has any suggestions or things I need to think about and you don't want to post them publicly then please, I BEG YOU, message me privately here on the page or over on my regular Facebook and let me know what I might need to consider.

Without me, Thomas has no one now. He's an adult. No one is legally responsible for him and while there's family around the U.S., I can't count on anyone. My mom said she'd be here but she's aging and I can't expect her to take on his care too much as she ages. Wow! What a wake up call.

Sunday, June 09, 2013


I'm probably going to say this from time to time but I need to, it's almost a compulsion to do so.

I am not perfect. Nowhere near it. Sometimes I write things without thinking it through and sometimes I write on a whim and discover later that you guys probably didn't need to know something I revealed. Sometimes I have really awful days where I don't cope in the healthiest ways but then
on other days I have it all together and I can conquer the world. I think that with having a son with this illness and then also extended family facing mental illnesses of their own that directly affect me, I am kind of set up to be tested daily in some form or another. I take each day as an opportunity to find some new strength inside of myself but sometimes, like today, I am overwhelmingly tired and just need to escape under childhood blankets and my Bear.

I am human, I make mistakes, I write without thinking first (sometimes), I'm no expert, I'll admit if I make a mistake, I'll do what I can for any of you if you ask something of me (track down info, call, private message etc.), I have the biggest heart but it can be easily broken, and more than anything, above all else, I am a mom of a young man struggling with schizophrenia. I am constantly questioning this illness, reading whatever I can about it, and grieving the loss of the original promise of Thomas's future, but make no mistake I am fighting like crazy to help him, protect him and love him and give him the best life that is possible for him.

I am not perfect but I am trying and as long as I'm trying, I'm succeeding and moving forward, and I think that's all any of us can expect of ourselves as we move through, between, over, under and around this illness called schizophrenia.

This day

Here it is a quiet Sunday afternoon and I'm climbing the walls. There is so much going on in my extended family and to be honest, I feel I have little else to give outside my lil 3, those being Thomas, my husband, and myself. My family as a whole has faced a lot of tragic setbacks and the after effects of those setbacks has been a continued march down a dry dusty road with a mirage being the only promise of quenching our thirst... and we all know how that ends.

I did something I'm not proud of but when I woke up this morning, I was still so tired from the previous days' trials and tribulations that I made sure Thomas was safe and sound, happy and secure, and that my husband would be fine without me and I shut off my phone (the only portal to a world I wanted no part of), I took an Ambien and I went back to bed, pulled every cover over my head, piled my blanket from my childhood on my face and topped it with my beloved Bear and I cried myself to sleep.

You see, all while my son is going through what he's going through and all while I'm going through it with him, there are outside forces hard at work testing my strength and resolve. This morning I had nothing left to give anyone so I took care of what most mattered to me and then I ran like hell to la la land.

Thankfully today, I am the only one down for the count. Thomas is happily hanging out with friends, he's properly fed (my touch of OCD shows in this moment--he MUST BE FED NUTRITIONALLY) and medicated, and my wonderful husband is out washing my car and making it sparkle for me. So I'm going to stay right here, watch a show, and relax.

I'm so over life right now.

Saturday, June 08, 2013

A New Player In The Game

I understand that I lament a lot about this illness. Some days it is so hard to get through just a few minutes of a day full of this illness but I have to give myself credit for something. There is much about this illness that I totally take in stride too. Maybe it's because I've lived with the little things that led up to the big thing (The first psychotic break last year) for so many years. It's amazing what you'll get used to and even learn to ignore when something becomes so mundane. What's been so hard lately is that the intensity of the symptoms have been too much for him to bear and consequently too much for me to bear. Seeing your child (or loved one) struggle with this illness will take a chunk out of you and leave you hemorrhaging on the living room floor sometimes.

Now I am in the mundane territory again. Let me preface what I'm going to say with an acknowledgment that I know these sorts of things are harbingers of a much bigger concern however seeing them jump in the game doesn't cause my heart rate to jump sky high right off the bat. It's more that I say to myself, "OK Melanie, here's another one, let's see what you can do for/about this."

What I'm talking about is that Thomas is quietly working on a new fear/delusion. As usual it started with a question about his dusty shelves in his room then went to him showing me a picture on his computer to now, a damn near obsession with this new thing. I called him out on it the minute the realization hit me what was going on and true to form, he sheepishly admitted that this new thing scared him. Then the excuses started rolling out of his mouth and I listened patiently to him but filed this away for the future. Here we are again where a simple anxiety becomes a giant monster in the room, or in this case, in his head.

I've been able to catch and eradicate these nasty little buggers before, these delusions that threaten to take over my son's sanity and I fully intend to get to work on this one now. It's a nearly impossible task to catch every anxiety before it morphs into a delusion but I consider it my duty now as his mom to do this for him. C'mon now, I don't have to change diapers or clean up after him much, and he's not always in my face saying, "mommy, mommy, mommy, mommy, mommy, mommy," until I want to scream. What's in my face now is a formidable opponent and one I am ready to do battle with if need be.

So, I'm drawing my sword once again and I'm headed into the fray. This I can do, this I have confidence to stand against, this I have strength to endure, and this I plan on winning against. His mind needs a break and while he prepares to rest for a bit I'm going to make sure that rest is as long as it can be. No monster is moving into my house. I have enough of them.

Thursday, June 06, 2013

On Second Thought

And there you go. I make frantic calls and write emails to doctors and when I met with one of them today after he had visited with Thomas I am told, in a nutshell, that there is nothing to worry about and on top of that, there will be no increase in medications. So.............

...........OK then.

Then is what I'm seeing and what I'm feeling worth listening to? This is the inner battle that rages inside of me when it comes to this illness and my son. Am I too in tune with nuance and blowing things out of proportion? Am I turning into THAT MOM who over worries, over protects, and is over involved? Should I be backing off and quit looking for signs of the illness and just let Thomas be? Am I just the WORLD'S BIGGEST IDIOT?

There I was in the first doctor's office listening as he took all of my concerns and one by one told me that aren't concerns at all. This is good news. Yes. I don't want what I've been witnessing to be illness related but why then can't I shake that kind of hair-standing-on-end, disturbance-in-the-force feeling that I have? What about his nights of terror that keep increasing? What about the new dependence on the anti-anxiety med? What about the dark moods of his that creep in fast like a wave rushing up the beach to soak me and that retreat only to replaced by white sand wiped clean as if there had never been footprints in the sand? WHEN WILL I STOP ASKING ALL OF THESE QUESTIONS?????

Frankly at the moment, I am baffled. I looked for cues from the doctor that maybe he was saying one thing but was trying to tell me something else with his eyes. I looked for concern, for eyes widened in emphasis, anything.

Nothing. Nada. Zilch.

So now I'm rethinking my panicked email to Thomas's therapist. Have I just set myself up to look like THAT MOM yet again? Is he going to rifle through all of my concerns and discount every one and leave me reeling in uncertainty yet again?


This is my frustration, this is what this illness does to me. It fills me with a mom, as a person. I think one thing and see one thing and then something else happens and it all disappears into swirling questions and self doubt.

I worry, I investigate, I document, I form my questions, I find some answers and then......

.......on second thought, I guess I was wrong.

Wednesday, June 05, 2013

The Life Raft

I've been on a bit of an internal downward spiral for a couple of days and my heart hasn't been here as much as I'd like it to be. It's funny because (and I should KNOW THIS BY NOW) that for every positive there is a negative...yin and yang.

On Monday I made the call to the vocational rehab guy but what I didn't tell you was that literally within minutes of hanging up with him, my son's meds doc called. I was full of enthusiasm and light explaining all of the positive changes I had seen in Thomas and when he started asking me questions I felt like he was sucking the air from the room. He asked about my son's symptoms and worried that they weren't totally gone yet. He gave me instructions to make sure my son got out of the house, to a store, to friends houses, out on walks, etc. And then the real kicker came. I asked him what his professional opinion was on whether Thomas should get a job or not (bear in mind I already knew the answer down deep inside) and he told me,

"Melanie...............(long pause) he needs to wait at least a month. He hasn't been well that long and he's really not well right now yet. We're not through with adjusting meds and you have to remember that he'll have good days and bad days."

Talk about ruining my great mood. Wow!!

But he was right.

He IS right.

And here is why he is.

Because after a few good days, my son came to me last night, shaking and wide-eyed and told me he was scared, that he was having paranoid thoughts again. He refused to take a shower and asked me for one of his new pills to help with his fear and he hugged me tightly and walked slowly back to his room (where he has been isolating himself to lately but I've been trying to ignore that fact because all I want to see are the good things).

Yes, he's smiling more now (I can't get a bad picture of him...I can't believe he's even letting me TAKE pictures of him!) and up until yesterday he seemed to have a calmness about him that was palpable but there have also been signs that I've been ignoring that show that things aren't right yet either.

OK, so he can't work yet, I knew deep down that he shouldn't be anyways because he's only very newly feeling better, AND the demons aren't gone, not by a long shot. My ignoring the obvious signs that the illness is still there in order to focus on all the positive stuff I see, doesn't serve me or him well at all.

I come back now to my analogy of a stormy sea. There is the life raft made up of all of the smiles, the laughter, his calm demeanor, the participation in life, his need to pull at the reins and get going on life and then there is that stormy sea around it all. Sure, we're safe in here for now, and oh my gosh how good it feels to be out of the elements a little bit for now, but the storm is still raging out there and as always, not knowing how long the life raft will hold up is the big question.

For me right now, the sinking feeling is inside of me again. I'm finding it harder to hold onto the sides of the raft to keep from capsizing and I look to the heavens, the dark storm clouds that threaten to drop torrents of rain again, and I am begging for just a little more time, a few more days inside this beautiful raft.

Tuesday, June 04, 2013

Vocational Rehab

With my son leaving high school the State of Idaho offered what is called vocational rehabilitation. My son is considered disabled by state standards so because of that, they offer help in finding a job or getting in to college. It's a really cool program and since we live in a small-ish town the counselor representing the state knows us when I call and is very helpful.

Yesterday I called him to see what he could do for my son for the summer where jobs are concerned. We set up a meeting for next week and talked a little and he told me a little about what would happen for my son.

First they will offer a work evaluation which means they will test my son in various skills and ask him what he likes and doesn't like to do. Then based on those results they will set him up with 2 job finding services in the area and they'll find something that fits his needs. It's very cool and a huge help because just going out and looking for a job isn't easy when you have to consider this illness.

I told the counselor about a recent TV show I had watched called "Undercover Boss". In it, the boss from Subway went into one of his shops and worked as a regular employee. At one point in the show there were timers going off, bread finishing baking at different rates of speeds, customers to help, and condiments to be stocked. The young kid managing the shop started ordering the undercover boss around and the boss was freaking out from the stress and repeated commands and the timers going off and being yelled at by his employee. It was utter chaos. That kind of thing cannot happen to my son. It just can't. Especially in a repeated daily onslaught as I imagine it would be like. I worked at McDonald's when I was my son's age and that was such a stressful job and tested me most days and knowing my son, nothing like that would be helpful to him or his illness. He would last about 2 days, if that, and would spiral into another episode. Consequently the counselor said to me referring to job opportunities, "OK, no fast food then."

Yeah, exactly.

So my son is set up to be evaluated. He is very excited. Me, not so much, especially so close to having been just released from the hospital and having spent weeks fighting for his sanity prior to that. I figure going to meet with the counselor is fine and anything beyond that we'll have to play by ear. What I've got right now though is a young man feeling better, graduated from high school, and wanting to build a super gaming computer so he is pulling at the reins to get a job, make some money, and start life. I'm trying to tell him that healing from psychosis takes time, that he's only a few days into feeling better, that he's new to the medication he's on, and that the computer can wait. None of this he heard and I am not his favorite person right now.

That's ok, I can live with it. Whether he knows it or not, it's not time to start jumping into life with both feet and I am uninterested in rushing him into life either.

Monday, June 03, 2013

The Current Theory

My son hasn't woken up yet today so I won't know for sure if my current theory is correct but it's been true for a couple days, which doesn't seem like much, but a couple good days in the life of a critically psychotic young man is an amazing accomplishment. Let me give you the backstory:

When he was in the hospital there was an incident in a common area that involved a nurse, a patient and the patient's visitor. It ended in a yelling match and my poor son ran from the room gripping my hand and absolutely terrified. He went from being fine (I'll call it "hospital fine" because he wasn't fine which is why he was in the hospital in the first place) to being in a major crisis complete with active, terrifying hallucinations that he couldn't fight back. His doctor was on the floor that night, thank God, and I left my wide-eyed, trembling, hallucinating son to track him down. I found him and told him what was going on and he went and grabbed a medication and brought it immediately to my son, gave it to him and then sat with him and tried to work him through the moment. That didn't work but the medication did.

When we left the hospital it was written on his discharge papers that "anxiety will exacerbate his psychosis" but they gave us no prescriptions to help with anxiety, no instructions even on how to lower anxiety and his first appointment with any outpatient caregiver was over a week away. I was dumbfounded.

Fast forward to last week. My son had some really strange physical symptoms that forced me to call the doctor and I heard from his nurse but never heard one word from him. In the mean time my son's physical symptoms disappeared but were replaced with growing anxiety and fear and hallucinations. By Friday I finally heard from the doctor and after speaking with her I got a prescription for some anti-anxiety medication to give him at night.

That night he was terrified to take his shower (one of his hallucinations is at it's worst in the shower) and I offered him one of these pills. He gladly took it and then took his shower and when he came out I said,

"Well? How are you?"

I was praying for good results. It was then that he smiled at me and said,

"It worked! I had no anxiety at all and I was able to take my shower."

I breathed a HUGE sigh of relief and was so thankful that I had spoken up about that medication.

Our next hurdle was the nights after he goes to bed. That is when he hears things and begins to see a clear hallucination as if this thing is standing in front of him. Every night since his psychotic episode that landed him in the hospital, I have not slept very well because I've been scared he would have a bad night. Well, the night after he took that pill went well and when the next night came, I gave him the pill to keep in his room and he closed his door and went to bed.

He woke the next morning and gave me the pill cup with the pill still in it and told me he had been ok that night. Could this be? Could the pill have worked enough the first night that even just having a little round white safety net in a cup beside his bed have been enough to get him through another night? It appeared to be the case.

So, my theory is this, and it's hardly a revelation but it's enough to feel like it is. Having lowered his anxiety level, it made it so that he couldn't escalate into psychosis. After all, if you don't FEEL scared then it's a lot easier to deal with scary situations with logic and clear vision. So, living through that first night when he took the pill with zero anxiety and subsequently no hallucinations and then having the safety net the next couple nights, showed him that what he's been hallucinating is in fact not real and since it's not real then he has nothing to be afraid of.

I think my theory is correct but I fear I'm putting a lot more credence to it than it deserves. It's been 2 nights in weeks of serious psychosis and I'm asking a lot of a little white pill but I'm hoping we are taking a turn for the better. I'll let you know when he wakes up if he had another good night.

Sunday, June 02, 2013

The Walks

The neatest thing has been happening in the last couple days. My husband and I take our dog for a walk a couple times each day. It's always a time for us to talk about life without computers, TV, and other distractions.

Starting a couple days ago my son has joined us on our walks. It's so wonderful because there are no distractions and we get to talk about, in my opinion, what reall
y matters. My son is a nature lover and will happily discuss the birds (his favorite subject), the stormy clouds on the horizon, the different landscaping in the yards, the wind (he loves the big gusts that practically blow him over ) and a myriad other nature related things. There's nothing better than realizing what's really important and that is our family bond, him, myself and his dad. Today we planned a much needed quiet, stress free trip to the Oregon Coast. We all agreed that it would be good for all of us to just sit out on the deck and listen to the waves and breathe the ocean air.

Today I am grateful for family time, for discovering a closeness we haven't had in a long time, and most importantly for the peace of mind these walks seem to bring to my son

Saturday, June 01, 2013

Graduation Day!!!!!!!!!

Today, exactly 7 months to the day, my son walked from his 2nd hospitalization with a diagnosis of acute paranoid schizophrenia. He was a very sick young man, still not stabilized, but cared only about getting out of the hospital and home to his life so he had signed himself out of the hospital. I remember feeling with every ounce of my being that that kid would not graduate high school. It was a foreboding that I couldn't shake even up until a few days ago. The reasons in my mind for him not graduating changed over the 7 months, first because he had missed so much school during a couple weeks of hospitalizations, then because he was so sick and not responding to medications, to most recently, inside this last hospitalization, him telling me he didn't want to walk in the ceremony.

But today, June 1st, 2013 my son, after working hard in school for years and years, after fighting like hell (since 8th grade) the ravages of this nasty, intrusive, life altering illness, WILL WALK IN GRADUATION TODAY AT 3pm. He will wear a royal purple robe and along with 300+ of his peers he will receive his diploma and walk into adulthood.


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