Posts Tagged ‘schizophrenia’

So Older Son asked for a Dr. Spencer Reid bag for his backpack this year. He is probably our favorite character on Criminal Minds.

Dr. Reid and his bag

I had to deflect a few times because he didn’t know he was getting it for his birthday, but now that he has turned 15 (how the #@$@&&#$$ did that happen?), he has opened it. Heck, he’s already filled it with his school supplies.

We love Dr. Reid. We love that our sons see him as a role model. Matthew Gray Gubler’s portrayal of the character is one to which my sons can easily relate. He’s super smart (probably written a bit smarter than my guys), he’s true to himself, and through that, he has confidence. There are worse options for a role model.

Neither of my sons have an eidetic memory, and I know at least one of them won’t go into criminal forensics. But I do know one plans on a PhD (the proud owner of the Dr. Reid bag) and wouldn’t be surprised if Younger Son ends up with a PhD too.

All of that is lovely and relatable for my two sons, but I think they may have another connection that is even stronger.

Dr. Reid has a mom who has schizophrenia too. Not a lot of characters on television or in the movies align that well with my sons’ lives.

Jane Lynch does an amazing portrayal of Diana Reid. The relationship of mother & son has grown to be wonderfully detailed. It offers a glimpse into caring for a parent who has a mental illness and the complexities that go along with it.

I hope I don’t follow the same path as the character, but I suppose it doesn’t hurt for the boys to realize I might need some help when I’m older, depending on how good my mind stays (or doesn’t). Obviously, Hubby will help too, and mostly I hope I stay basically as I am now, but…

So thank you to Gubler & Lynch for creating and portraying our “normal” in mainstream entertainment. And for a really neat bag.

Older Son with bag and a hint about his PhD.

@gublernation @janemarielynch

And thank you for being in C. Guest’s movies, Ms. Lynch!

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Another shock of young lives cut short.

Another round of blaming whatever administration is currently in office.

Another strong stance by NRA, teachers’ unions, politicians.

None of that matters.

This extreme violence will not stop until there is improved treatment and support for mental health. Getting rid of the stigma and shame of having a mental illness is the needed change.

I heard an interview with someone from NAMI recently. She made a great observation. When someone gets a diagnosis of cancer or some other illness, or even a broken leg, or an operation, the person receives sympathy, support, offers to drive them to appointments, and lots of covered-dishes.

When you receive a diagnosis of a mental illness, it’s not shared, it’s danced around. Sometimes you are even told that it is probably best not to talk about it in certain places.

Our children are not learning coping skills. They are not learning social skills. This changes their perceptions of themselves. This can lead to a changed, altered, distorted view. Some will turn inward and just be as invisible as possible. Some will develop eating disorders. Some will become depressed. Many others will encounter their first episode of an illness like bipolar, schizo-affective, or schizophrenia.

Many of them will face it alone. They have heard too many negative and derogatory statements about mental illness so they will try to hide it, maybe self-medicate, until something becomes unmanageable.

Then they become a danger to themselves and others.

This pattern needs to end. If it doesn’t, all the other chatter and discussions and arguments won’t do anything.

We waited until our sons were older to name my illness. The stigma attached to schizophrenia is still strong. We didn’t want negative press about untreated schizophrenia, or mental illness in general, to cause them stress when the descriptions they could hear didn’t match their mom. They get it now.

I have contributed to this by following suggestions to not name it or even talk about it in certain parts of my life. That’s over. I can’t carry that anymore. If I continue to make it easier for others by avoiding it, making it where they don’t have to deal with it, then I’m part of the problem.

Start the conversation that can actually make a difference for our youth. Talk about mental health. Today.

My deepest sympathies to the latest victims.

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I met this elephant trainer not too long ago. Only spoke with him for a brief time, but he was very polite and we shared an intense series of sentences about mental health (illness, disease) and stigma. He said I should be proud of what I live with, not ashamed. I think generally I am proud of balancing my existence with a mental illness. But yes, there are times I am ashamed, afraid, to mention it because of the stigma attached to it.

So many people live with a mental illness and the weight of the stigma is overwhelming. The weight of keeping up appearances is daunting. Think of any other illness. Really, right now, think of any other illness. Now imagine a person saying, “I just can’t do stuff today because of the ____________. ” Every single person would give that person a pass and probably some sympathy, maybe offer some help. Make a meal and drop it off.

Now fill in that blank with a mental illness.

Oh, chin up, it’s just work. You can get through it. Cheer up, it can’t be that bad. Oh, I didn’t know, sorry. Well, the weekend is coming.

Or nothing at all.

Not everyone will respond this way. The folks who respond with the same compassion as the “any other illness” scenario probably know or live with someone who has a mental illness.

The ones who respond any other way don’t know what it’s like to live with it and don’t know much about it. Why would they? It’s easy and acceptable to not know about mental illness because of the stigma. Because of the outlandish Hollywood portrayals that make a mockery of the day to day life with mental illness. Those portrayals set things back every time. You want to see a good portrayal, a understated, realistic one? Watch Love and Mercy.

Back to the example above. “I just can’t do stuff today.” But instead the person living with a mental illness will pick themselves, put on the socially acceptable happy face, the persona we assume each day to hide what makes others uncomfortable. Well, we get tired. Some get really tired. I’m tired of being tired. I’m tired of being ashamed. I’m tired of keeping it out of the way because folks would either have to educate themselves a bit or simply be sympathetic on faith, even if they don’t understand it.

I’ve written it before. Everyone knows someone who is living with mental illness, you just might not know it. But if you know me, in real life or just because you miraculously stumbled onto my humble blog, you know someone who lives (and quite well, thank you very much) with schizophrenia every freakin’ day. Ask me questions if you don’t understand something. Educate yourself and spread it around. Help to get rid of the shame, the stigma, the misconceptions. Read a pamphlet. Read a website (vett your sources, please!).

Remember, you know someone.

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I don’t know what we’d have for lunch, but truly I don’t think I would have time to eat. So John could pick the restaurant. As long as it has something chocolate. And sweet tea. And actually, it would be great if there was a way I could smoke too, but then we’d have to use the HTTM to go back to the 80s.

I went into the movie on faith alone that John Cusack would deliver one of his fabulous performances. I like the Beach Boys, I like Wilson Phillips, but didn’t know a lot about them. Learned a little during W-P heydey because the publicity talked a bit about the rough relationship with their dad and I assumed drugs. So truly I thought Love & Mercy would be about Brian Wilson’s rehab and yada yada yada.


1:36:00-1:36:35. If you watch no other part of this movie, cue up these 35 seconds. That’s me up on the screen. No, I’m not a tenor from a beloved American band. But that is me. I know Brian lived it and he and I could have several lunches together comparing notes. Mr. Cusack nailed it. Without bullshit around it, without sensationalizing it, just being there in that moment when you are finally tired enough to trust someone with the words, “I hear voices.”

And as immediately as the words pass over your lips, the look of anticipation expecting the person you breathed the words to to laugh, walk away, call you crazy without realizing that you are trying to express that very sentiment in a very real way. Then from 1:36:36-1:36:49, Melinda says, “lets go” and Brian says, “I don’t know how.” I wish I could explain how true that was and how well it was delivered. You forget how to do things on your own. I was lucky my psychiatrist was amazing. Dr. O was incredible at cognitive behavioral therapy. Yes, there were meds and yes, they make you fall asleep, feel nauseous, and basically numb, not really alive but rather simply functioning. But you really don’t know how. You have to relearn everything.

I couldn’t make even the simplest decisions. What to wear, what to eat, which way to walk to classes. And Paul Dano at the table with the cacophony of noises. Dear God, make it stop. That still affects me today, noises that I can’t control that become all too loud, deafening, and never-ending. The fixation Dano had throughout the “past” scenes. The exhaustion and complacency Cusack had in the “future” scenes, worn down by decades of living with it.


As I believe I have written before, I was lucky, I got treatment after only seven years from onset. I cannot fathom decades without treatment. I have permanent re-wiring from just the seven years, and a few minor episodes since initial treatment, and I can only imagine the amount of compensation Mr. Wilson has to do every day. I had long-term side effects from my meds. Some went away once I got off of them, like the glaucoma, but the neuropathy in my hands and feet is here to stay. I no longer notice the tardive dyskinesia, it’s been there that long. Again, I can only imagine the side-effects Mr. Wilson contends with on a daily basis.

Oh my lanta, the withdrawal he must have gone through when he finally got out from under Landy’s control. I am so glad they did not show that because it had to be wicked and painful and long. And I am happy Landy got what he deserved. That wasn’t vengeance, that was justice and protecting others from his disgusting behavior.

The auditory hallucinations were portrayed in an incredibly authentic way and the speech patterns for both past and future had just enough of the “classic” schizophrenic speech. Side note-my theory on the speech, from a sample size of one, so not very scientific, is that I was just trying to keep up with the voices and the people around me. The style of the film resonated as true too. I have snippets of my youth, scenes, and I can flashback to them quite vividly, almost on command. But a perfect timeline does not exist.

I read in a comment or a review somewhere that the movie moved a little too slow. Then that person is either lucky enough to never have lived with mental illness or is living with it still and had to distance himself. Time moves so differently when you’re in an episode. Not just for the person, but for those living or working with him. You try to keep up with real time, but you’re not sleeping, eating, or thinking properly. It’s harder than it seems.

Obviously I didn’t see this in the theaters, but at home courtesy of Redbox and thank goodness. I hate having a runny, snotty nose with big tears running down my face in public, even in a dark movie theater. Plus I had to pause it a few times to compose myself. Any movie that can evoke emotion is one that I love and this one goes way up to the top of my list. I saw myself, a true, real, believable portrayal of me, on screen. Thank you, John Cusack, Paul Dano, and, most importantly, Brian Wilson for sharing your story.


And yes, peeps of my generation, I would thank John for some choice earlier roles, showing us that not all guys were going to be dicks, but that some would actually treat a lady nicely. And of course, 1408. And Grosse Pointe Blank. I’m no idiot.

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“There is no rhyme or reason to depression, no rhyme or reason to suicide. He was tired.” Dr. Jeff on Fox this morning about Robin Williams.
I’ve read a lot online today about Robin Williams, all beautiful. He had mental illness and he was tired. There was a quote from him about only getting a little spark of madness and being careful not to lose it. I like that quote and a little madness is a good thing. A lot of madness makes one tired.

I’ve been that tired. And when the only answer seemed to be the path Mr. Williams sadly chose, I walked the streets of Philadelphia on that night 25 years ago trying to determine the best way to do it. Luckily for me I wandered near a friend’s apartment and after he opened his door and invited me in, he didn’t ask any challenging questions. He was just there with me. I don’t remember the evening very well, don’t know how long I was even there, but Mole just let me be. And it was enough.

I was tired. Tired of the voices yelling berating comments at me all day and night. Tired of trying to keep up with classes and not showing the truth to my classmates. Tired of the paranoia that everyone in my class hated me and all were out to sabotage any efforts I made. Tired of trying the rituals even though they hadn’t worked in months. Tired of not sleeping.

I know how tired Mr. Williams had to have been. 

We cannot be ashamed or hide who we are. With treatment, I’m just like you. But if I can’t talk about the mental illness because of the actions of someone with untreated mental illness, we will continue to have unnecessary tragedies in our world. When we realize that untreated mental illness causes such sadness and stop hiding it because it makes us uncomfortable we can start to make progress.

I have schizophrenia. It does not define me, is simply part of me. Didn’t ask for it, but it has helped shape who I am. And I think I rock.

You know someone with mental illness. You have for as long as you have known me. So it is a part of your life too. I’m probably not the only person with mental illness that you know.

Help the conversation grow and become loud. If we talk about it and find ways to help all people with mental illness, we can stop sadness like the loss of an actor who has been a part of my life since I was 8. We can stop tragedies like school shootings where innocents die for no reason but a lack of untreated and uncontrolled mental illness.

Oh captain, my captain…not sure when I’ll be able to watch that movie again. It was hard to watch 25 years ago. Hard again now for different reasons.

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The unknown is the most terrifying aspect of a person’s life.  It can grip you with a fear so intense that everything else in the world stops.  You lose all track of time.  These unknowns can be major events in one’s life-college, marriage, parenthood, or simple everyday moments.  The unknown can sneak up on you and catch you off guard, knocking the wind right out of you.  When the unknown is looming out there, it is simply better to stay put.  In your house.  Hiding.

Many days in my life I have spent hiding in my home.  My lovely, cluttered, book-filled home where lots of safe escape options exist (remember it’s book-filled).  When I haven’t been up for dealing with the real world, I travel to the safety of a book.  Or to those wonderful delusions of grandeur.  Many thoughts have been drifting to the idea of intelligence and the application of one’s intelligence.  I truthfully do not use all of mine in any given day.  That surely sounds like the cockiest statement ever written and makes it seem that I need a piece of humble pie.  But I don’t like to think as much as I can, I don’t like to climb Bloom’s ladder if you will, or rise up through Maslow’s hierarchy, because then I find myself knee-deep in the quagmire of thought, longing for Walden’s Pond to live deliberately.

To sit and truly think deeply about motherhood and the awesomeness of it would blow my mind away and probably send me to the padded room where I would no my sons no good whatsoever.  I examine it in small pieces, snapshots.  Marriage is the same way-to think about the power of that bond too much makes my mind and heart fill to the point of bursting.  These two particular topics also bring up the worst-case scenario-ist as I then start to worry.

And there are so many other things I would love to learn.  I don’t want to go for my PhD…I don’t need the pretty piece of paper. Though I wouldn’t mind processing each year at commencement with the PhD hat-it’s much nicer than the mortar board-plus the velvet on the sleeves!  But choosing to pursue a degree simply for fashion is more Elle Woods than I can muster.  Besides, if I don’t earn a PhD in a related field, it really does me no good in my professional life.  I like where I am in my job.  My plateau is far and wide with many caves, paths, and tributaries to explore.  No, if I ever go for another degree, it will be in something like science.  Still too afraid of the great unknown of mathematics, but science is intriguing.  Perhaps neuroscience or biology…not chemistry, I fear there may be too much math in that as well.  But some type of science that enables me to better understand how people work.  Physics could also be fun, but again the bloody math.  To face an unknown like neuroscience would be fun.

Other unknowns are less fun to fathom.  The boys decided to creep themselves out tonight when we got home.  They swore they saw a person hiding next to the house.  I allowed myself to get sucked right in and stared at the yard a little more closely.  They are exploring their limits for fear.  I feel like my limits for fear (on the fictional level) are neverending.  My real life fears relate back to those unknowns.  What will my sons grow up to be?  Healthy and happy, I hope.   But what will they do, what will they contribute to the world?  Am I teaching them what they need to know to be a compassionate human being?  Am I teaching what they need to know to navigate their way?  Will they know how to respond to different situations that they will inevitably face throughout their lives?  Those situations when I can’t be there with them?  Will they feel my support, love, even if I’m not standing next to them?

Other unknowns linger in my past.  What mistakes have I made that have had an impact on others in ways that I can’t see?  What may I have done or not done that altered something…in my life or possibly others?  Then I start that circle of knowing that you can’t worry about the past, present, or future unknowns because they are exactly that.  Unknown.

The known is a safe place to linger.  But I try to carry the past, present, and future with me in the known.  I hope with those three moments in time with me at all times I make the smartest choice I can in any given moment.  The world looks a bit differently to me in certain ways and the skewed perception sometimes creates problems, but I have known safety checks in place to help balance that when necessary.  I wrote of the moment when my thinking becomes straight again during an episode.  Until I that moment happens during an episode, the unknown is known.  Anything is possible and reality blurs with the creations in my mind.  During those times, I was always deep in exploration of the unknowns, but those alternate worlds were real.  I could, in those times, know the unknown.

That reality was a known.  And then that was the safety of the known.  It was a beautiful place.  No pain, no mistakes.  You could redo anything you needed to when it didn’t work out quite the right way.  You could fix injustices.  It felt quite like being a superhero.  A mythological creature.

Truth be known, sometimes I miss that unknown.  It was far more easy to exist.

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working out of my house if I had an episode again?  Wow.  That’s a doozy of a question.  I’ve never worked a full time type of job with other coworkers while having an episode.  How the heck would that go?  Would I be able to balance it all?  Or would a particular part of life suffer?  I would really hope I would be able to summon up the strength to manage throughout the day but not at the cost of not managing at home.  The episode I had a few years ago was quite manageable since I worked from home and the boys were so young.

I really hope I wouldn’t feel so drained by the end of the workday that I had nothing left for my sons and Hubby.  I really hope I wouldn’t try to process all of the feelings and energies of the episode in the few hours I get with them each day.  I hope that I wouldn’t be walking around angry with my coworkers all day, but I also know I couldn’t be that way.  Not quite what you want at the office.  I know that they are standards and protocols that are easy enough to follow at work, even in an episode, I think I could keep up appearances until it passed.  But would I then be so exhausted by the time I drove the 30 miles home?  (Another thing I don’t handle well when in an episode is driving-avoid it if at all possible, which clearly would not be possible since I would still have to go to work!)  Would I be  so tired that I would lose my patience with my sons?  Would the adage of hurting the ones you love come true?  Would I put so much energy and effort out during the day that I would have nothing left and have a quick temper?  Would I not be able to listen to their stories of their days with an open ear?  Would I be in zombie mode?

How would I handle sleep now?  I could sleep whenever before, but now I would have to be awake at work.  It’s a friendly environment, but I think napping on the desk is frowned upon.  I suppose I would just have to let certain thinks go at home to get the extra rest.  Oh, but then the OCD of not doing things at home could possible drive me up new and exciting walls.  Some semblance of normalcy would have to be maintained!

Anyway…the brain clearly wants to wonder about this stuff right now and the best way for me to handle that is to let it wander in the wonderings.




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It’s an interesting place to be.  When an episode of the schizophrenia is coming to an end, or at least trying to, there will be a battle in my brain.  It’s fascinating to experience.  It truly feels like two separate minds trying to control me.  One tries to get a foothold back into my normalcy while the other fights tooth and nail to stay in the delusions of grandeur.  The delusions are an easier place to dwell at times.  It always allows for a do-over if something goes wrong.  You’re always the champion.  You always matter and you never belittle anyone while you are riding high in this alternate universe.

As the alternate universe starts to waver, it feels like an earthquake that is only happening in my brain.  There is a sensation of a giant snap that will happen soon as reality comes back into control.  Like there is a giant rubber band being pulled back and then it’s shot out across the miles of brainwaves.  The tremors are startling at times.

When that point comes, when the earth begins to quake in my brain, it is exhilarating, frightening, and calming all at once.  There is a peace that starts to come over daily existence knowing that maintaining a double life only will last a month or two more.  At least that’s the way it usually happened for me.  I stop feeling like I have the brain of Abby someone…Abby Normal.



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They are stealthy.  You don’t realize they are there until they have a stronghold and you are forced to face an uphill battle in order to get them to leave.  By the time the cacophony is identified, it really is too late.  The first is always the Commentator.  The gender changes over the years, so for our purposes, we’ll use the female pronouns.  Commentator doesn’t have a name other than the descriptive title, but she is an old friend.  She seemingly doesn’t pose any threat nor any possibility of harm.  You rather like that she is back to describe your every move.  From the “extraordinary”–“J is skillfully navigating into the traffic and earns not one glare from the other drivers as she slides the car  into the middle lane…” to the purest description of boring possible–“J is scratching the right lower calf because it has an itch.”  Doesn’t matter what you are doing, she is there giving the play by play action.  You welcome her.  You know you are not alone as things in life start to feel a little less secure than usual.

But you should be afraid of Commentator.  You should run screaming from her.  While she herself poses no threat, she is the gateway to all of the others.  She opens the door and invites the others in, as if they were vampires and cannot enter without an invitation.  The others are not as verbose as her and so you do not truly notice their occasional comment or observation.  You may hear them, but you write it off to a traveling thought lingering in the filter of your brain.

Until you are finally in a very quiet location and you cannot help but realize that the cacophony has returned.  The voices a person with schizophrenia may hear over a lifetime are varied.  At least that’s been my experience over the three decades of living with it in my life.  There has been God, Satan, my father, myself, my childhood self, Barbie, among others.  And of course, the Commentator.  Once there was a very dark person, genderless, really, who said very bad things and suggested horrific “solutions”, always only self-imposed, causing harm only to myself, but horrific anyway.  That one was with me from age 17 till 19 (until I started treatment) and fortunately has never returned.

For me, the schizophrenia has always been a blessing and a curse.  I got amazing work done when I was in an active episode.  Sleep was not needed as much and there was usually a helpful voice that would tell me what to do or say when I got too confused due to the lack of sleep.  The voices often solved problems for me.  During the many years I have not been in an active episode and have studied the illness, I have gained advantages and I now better understand what’s happening when in an episode.  But at times this creates a paradox in itself because I’m deep enough into an episode to identify it but still well enough to step outside and determine, in an objective, clinical sort of way, ‘oh my, I need to do this, this, and this because I’m having an episode’.  It’s an odd place to exist.  It fortunately doesn’t happen often and doesn’t last for long.

At this point, I have been able to take the voices in stride when a little episode has hit over the years. The one episode about six years ago was not awful as I was able to readily identify it and upped my treatment to kick its arse back into place.  The voices then were really just a nuisance, but not harmful.  Obviously, I realize in the grand scheme of things, they are technically harmful as one really shouldn’t be hearing them in the first place, but relatively speaking, they didn’t do much.  The last bad episode was when I was pregnant with older son and had intentionally (and with the four doctors’ permissions) went off the medications so I could try to get pregnant.  That episode started in the second month of the pregnancy and by the third month had crippled me to point of not being able to leave the house.  But Hubby was there and took care of me and both sons during their times in my womb.  There was no episode with younger son since I had started the new treatment during the first pregnancy.

Cacophony.  What a wonderful word.  I wonder if I like it for the definition, a harsh, discordant mixture of sounds, or because it reminds me of so many other wonderful words…sarcophagus, symphony, epiphany, chaos.  Not sure.  I feel smarter when I’m in an episode, although I do have more tangential thinking patterns.  You would too if you were listening to as many people as I do then.

This reflective nature at this time about this part of my life makes sense to me…I’ve been thinking about it a lot as I reflect on younger son’s journey.  (His tic has evolved to a chest thump.  It’s cute.  He’s a little Tarzan.)  The voices are invisible.  They’re easier to hide, especially when you are used to them and know how to handle it.  It’s harder to hide thumping your chest.

Stealthy cacophony.

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English: Author - John Henkel, from the Food a...

Having lived with schizophrenia for this long, one gets used to a heightened level of paranoia as a norm.  I am still haunted by the one psychiatrist who said I shouldn’t have children.  But I do have two wonderful sons and I try to be the best mother I can be.  Still, I watch my sons closely for any early warning signs, reminding myself they are still not of the traditional age of onset.  Younger son, as I have written, will be evaluated for Tourette’s syndrome and I wouldn’t be surprised if it comes back as a “yes” as both involve misfirings of neurochemicals in similar areas of the brain.


But last night older son was talking under his breath.  When I asked him if he was talking to himself he said he was talking to the angel and the devil that sit on his shoulders.  My heart skipped a beat.  Then I asked if he was making them talk or if they talked on their own.  He assured me that he makes them talk.  I asked how many there were.  He answered eight.  The second time my heart skipped a beat.  He then explained a very detailed hierarchy about these self-consciences.  The angel has a set, the devil has a set, and so on.  I felt fine by the end of our conversation and the paranoia relaxed back to the regular level.


We have not yet told them about what Mommy has because they are young and do not need to know yet.  We’ll tell them when the time comes because I do not want to perpetuate the practice of not talking about important things that exists in the families.  That creates more messes than it’s worth.  They will know what is in their pasts and what to be aware of for their well-beings over their lifetimes.


Eight voices.  I had eight voices.  The first two were God and the devil.  At first they were comforting.  But as the six others joined them over the years, and as what they were saying became more violent, they were less and less comforting.  I do not miss them, most of the time.  Sometimes though, when the decision is really difficult, I wonder how it would be if they were here making the decision for me.  It would take the burden off my shoulders.  But accountability is a part of life.  Making good choices.  Even without a little angel and devil on your shoulders.


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