fa la la la la

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Phoenix Metropolitan Men's Chorus

We have firm concert dates!

Just found out today that the Phoenix Metropolitan Men’s Chorus Holiday concert dates are December 13, 14, 15.  Friday, Saturday and Sunday.  The Friday and Saturday concerts will be evening and the Sunday will be a matinee at 2pm.  He’s doing fantastic and this is turning out very very well for him I’m very pleased to say!

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Of course I will be perched front and center at all 3 shows. 😀

If you are out there reading and local and would like a ticket, please let me know–I’ll arrange one for you (they are running $25 for adults with discounts for seniors and kids) and we can all go together!  And you can meet my famous, singing brother!  😀

Proud sister!

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baritone

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 My brother will be performing on some of Phoenix’s most prestigious stages in the Baritone section of the Phoenix Metropolitan Men’s Chorus with rehearsals starting September 24th.

MAY I JUST SCREAM FOR ONE SECOND???

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I knew he had a good voice.  And I knew it was still a long shot.  This is a big men’s chorus in town but of course not anyone can just come sing because they want to.  You have to audition and audition my brother did.

Tonite at 5pm we set out in a crazy storm toward North Phoenix where the auditions were being held.  Without a doubt I was more nervous than he was.  We were singing in the car the whole way.  We were told however that he didn’t need to have any kind of song prepared; he would be tested on range, voice matching and the ability to hold a note.

 

 

We arrived drenched in uncharacteristic Phoenix rain while leaving my umbrella in the car.

My brother was filling out the initial form with water droplets all over his glasses.

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The President of the organization, Capone, met us cheerfully.  He’s the guy we’d been corresponding with for a period of months setting all of this up.  What a nice cordial fella.

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he’s in the back row third from the left

We visited for a bit then the chorus Director, Mark, arrived and very quickly whisked John in to a small anteroom for the audition.

I was doing my best to play it cool conversing with Capone but I could hear through the door and they were doing scales and Alfonse was hitting every single dang note.  Even Capone remarked “Wow he’s doing a lot better than I did at my audition”.  He shared about how nervous he was waiting for days to hear if he’d made it and how utterly thrilled he was to hear he got in.  “It changed my life” he said.  He shared about how warm and welcoming this community is.  “John will be welcomed with open arms and he will be taken by the hand every step of the way”.

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Music to my weary worn down by the mental health system ears.

They emerged from that side room in a matter of minutes and I overheard Alfonse saying as they walked out “I’m in a program for people with mental illness”.  Uhoh I thought.  I’m sure they asked him what he did for a living and that’s what he answered.  He didn’t skirt it but just owned it and put it out  there.  Ok, well there it is.

Mark swiftly slapped the paper right down on the table saying one word, loudly and crisply, “Baritone”.

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I wasn’t quite sure what that meant so tried to play it cool just going along as I noted he wrote something else on the paper.  He pointed it out as I said that John had lots of flexibility in his schedule and is very prompt and reliable so can be a great asset like that (still thinking I was selling it).  He then directed the writing on the paper to Capone “see, volunteer” in a section of the paper reserved for special skills.

I thought “oh maybe they are designating him as volunteer” which actually would be ok.

We talked a bit more, I heard something about an orientation being discussed and then something about introducing John to the leader of the Baritone section but didn’t say anything for fear of being pushy presumptuous.

I shortly then said “ok what’s the procedure now?  When will we know if he’s in the chorus?”.

Capone smiled this huge romantic smile and said “oh he’s in”.

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I gasped!  Chills ran all over my body and tears sprung to my eyes.

“Oh I’m sorry that wasn’t clear.  Yes, he’s in.  He will start rehearsals in September but you’re welcome to stay tonite and watch our rehearsal for the September show”.

OMG OMG OMG

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He made it!  Right then and there!  HE MADE IT!!!!

Deep breath.

There was about a 40 min. break until rehearsal started so we decided to go celebrate and went for some amazing Mexican food at  Ajo Al’s and margaritas.  OMG HE MADE IT!

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My brother’s life is getting ready to change big time.

Now the September performance is at the historic Orpheum Theatre in downtown Phoenix.  This is a HUGE theatre.  One where I saw Bobby Caldwell and the Jersey Boys touring show.  I also saw Riverdance there once.  It’s a big stage that gets big names.  They said something about Susan Boyle performing after them (are they opening for her maybe?).

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OMG OMG OMG HE MADE IT!

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We came back after dinner and watched rehearsal.  When we walked in the Director stopped for a moment and introduced us and all of the members applauded.  OMG!

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I asked and right now they have about 60 members but it can go up to around 100.  They are doing constant auditions this month for the upcoming season.  I went back to Facebook and looked at my original post–I’ve been reaching out to this organization since last April.

We heard them rehearse a very complex song that was so interesting and haunting…like mystical and angelic.

They took a little break and many of the men came up and introduced themselves to us…what a friendly group.

The leader of the Baritone section, also named John was super friendly and said to my Alfonse “Mark told me you have some amazing note matching skills”.  Alfonse was so humble about it as usual and said “well I can hit the lower notes”.

OMG!

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I’m still so overwhelmed.  We left at the break and most of the men waved goodbye to us…such a friendly, healthy environment.

My schizophrenic brother is the next baritone in the prestigious Phoenix Men’s Metropolitan Chorus.  He led with his voice and his voice carried the day.

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Now doesn’t that just make you feel something?

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silver lining

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It’s been awhile since I’ve done an update on my dear Alfonse.

It’s been a time of change lately which always or at least usually, tends to to involve some tumult.  Over a few weeks we managed to find a pharmacy who will dispense his highly regulated med, a lab to get his weekly draws, remove him from the dysfunctional, opposite of helpful ACT Team and get him set up with his new Psychiatrist, someone who can actually be there consistently for him and help him.  Whew!  Yes it’s been a lot of phone calls and managing including his professional Advocate Manny, his volunteer Compeer Lynn and of course my Dad and I.  He had a bad spell around Thanksgiving which was sliding fast toward another hospitalization but thankfully I caught it and found out he was, of no fault of his own, taking 1/3 his major med dose due to a glitch along the way and the wrong labeling on his bottle.  I’m telling you, these medical issues are never to be ignored and not stayed on top of.  Especially diagnoses as delicate as my brother’s sometimes.

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Yesterday turned out to be another roller coaster while in the middle of my work day.

I received notice from Manny that the place where the ACT Team is located, where John has been taking daily classes regularly, has decided that since he no longer sees one of their docs, he can no longer attend their classes.  It’s not surprising they torpedoed him like this.  He has received marginal at best services there, they got called out on it (by me–who is preparing to call them out in a more descriptive ordered way in an article I’m working on for a national forum dealing with these things , ala this is what your meager tax dollars are actually going to), so somehow they relied on some unbreakable policy that this Schizophrenic person can no longer avail himself to groups like “Fun and Fitness” (even with a medical Dr’s release which they have) and “Nutrition” because he doesn’t see one of their Dr’s.  They want him out of there plain and simple.  If you don’t play by our rules, we want nothing to do with you kind of thing.

Now we could fight that legally if we wanted.  But really, who wants to stay at a party where they are not wanted?  Ironically I dealt with those exact issues myself this week!  I’m just realizing that as I type!  Now that’s kinda funny to me right now.  Seriously, who wants to bang your head against a door to a club who isn’t warm and welcoming to you and in reality not good for you anyway?  We just didn’t think we had options and at the time and John was bonded with this place and the instructors.  But they apparently think it’s ok and a good thing to cut someone off “cold turkey” again.  Remember when the Clinical Coordinator thought, because they couldn’t get a billing issue squared away for John that it would be ok for him to go “cold turkey” off one of his major medications?  Yeah, this is the same group.  It’s beyond dysfunctional, it’s in my opinion outright abusive to the population they are supposed to care for and service.

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So yesterday, in the  middle of my work day, I also receive a text from Lynn, John’s “Compeer”.  She’s the gal who’s been working with him as a peer support person or “recovery coach”.  She’s also in the program.  She’s the one who discovered John in a very bad state one morning because he’d not taken his meds and the lack of ACT Team had abandoned him on his med check AGAIN and he was sitting there unmedicated waiting for them for hours.  That was the last straw for me with those people.  Ridiculous and dangerous.

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Lynn, however, was the one who handled that moment with pure class and professionalism and got him turned around out of that crisis single handedly. And now she’s calling me saying she may no longer be able to work with him because, apparently, she believed the ACT Team managed to not only get John discharged from their services but the entire Mental Health funding from the entire State of Arizona, Magellan Health Care.  The big umbrella under which they are contracted.

Now, as of writing this at this moment, I don’t know if this is true but it’s what John believed and Lynn believed yesterday.  I will get to the bottom of it today but ya know the ACT Team, the one who’s designed to be that intensive program for the fragilist of the fragile patients, they don’t really roll in to the office until 9 at the earliest I’ve been told this am when I phoned at 8:30.  Yeah, ok.

In Lynn’s message, she said she thought she could still see John but under another set if circumstances which we’d have to get him signed up under and I was to call her supervisor which I did.

This is where the clouds began to part.   First of all, this woman listened to my frustration.  I explained to her how my brother is highly motivated to attend classes and groups and is very reliable and loves it.  Which is half the battle with the mentally ill:  getting them involved and motivated.  He has his own car, he can get there and he will get there every day but now how do we find them for him?  She was understandably appalled at this other Center’s apathy as she works with the same population and immediately told me he’d be welcome to come to their center called Wellness City.

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Here’s the big bright silver lining that popped through as I sat in my car talking to her in the Trader Joe’s parking lot  yesterday.  Wellness City is a highly utilized facility and very active–they have Recovery programs as well as lots of socialization activities and lunches!  And the only glitch she said was “well he won’t get Dr. or nursing services here”.  EUREKA!  The one thing he was punished for at the other hideous clinic (Choices Enclave) –not using their Dr–is completely not an issue here as they don’t even have Dr’s there!  I immediately said “he’s totally covered in that arena–he just needs groups, classes, a community”.  And she happily and proudly replied “we have all that here”.  She also said “he’s so lucky to have someone like you advocating for him, most of our population don’t have that”.  I was a hindrance to the ACT Team but a benefit to this woman.   Clearly this is where we belong.

And get this, it’s about 8 minutes from my house (and maybe 10 from John’s).  Meaning it’s closer than that other mausoleum.  And it sounds very lively and well attended.  My only regret is I didn’t find it sooner.  The only requirement is they have to be under the Magellan umbrella which John is, at least has been unless that toxic ACT Team manipulated in to signing himself out of that somehow.  Oh they will be hearing from me this morning I guarantee. That is if any of them show up to the office anytime.  I mean it’s Friday, I’m sure they have things to do.

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Yeah you can tell I’m still pissed at them.  They are the coal in the stocking that keeps on giving right up to the bitter end.

I laid all of this out for John last night when we went out to the Nutcracker and he said “most of the time I’m the only one at those groups there anyway”.  Can you imagine?  You walk in, the place feels dead, but they have schedules and greaseboards that talk about all of their wonderful groups and classes, you see a few people sitting in the waiting room and lots of staff milling around.  I’m told each case manager in the main program, not ACT Team, has a large load of 50 or so clients.  That means this place services hundreds of mentally ill people and yet my brother is often the ONLY person attending groups there and they kicked him out.

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That means no one is invested in getting these people to attend their programs.  This is the exact experience we had with the shell game at ACT Team.  We were told of all the wonderful services they provide and all the case managers doing things like “Home Management, Transportation, Volunteer work, Voc Rehab, Counseling, ” etc etc etc and the one and only thing he ever got was daily “med checks” which he never needed, were inconsistent (meaning they often no showed on him) and forced him to wait to take his meds on their schedule, often for hours, interrupting his daily routine.  Again, that was the only service he ever received from them over a period of months, he went through two Psychiatrists and three case managers some of whom never met with him, even once.

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Anyway, all of that is to say, John meets with Lynn today who will take him to Wellness City and get him registered and on his way with that Community and I truly believe he will find his Tribe there.  People like him, with the same struggles and doing their best to maximize their lives.  Which is absolutely my dear brother John.  Who knows I told him last night, he might find himself as a Compeer Recovery Coach himself one day and be able to volunteer right with that organization.  Just like I put my trauma to use supporting crime victims’ families, maybe this will be his path as well.  Putting your own tragic story to do good in the world somehow.

I said it this weekend and I’ll say it again, sometimes you have to cut the cords of relationships that are draining and dysfunctional out of your life completely to create space for your Tribe to find you and claim you as your own.

So you see Alfonse and I are on a similar path, together, walking and supporting each other through our lives.

The miracle of this serendipity is not lost on me.

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Meanwhile back in Tempe….

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Most people who hang out with me locally know how much I’m in love with the Tempe Town Lake Pedestrian Bridge.  I fell in love with it at first sight seeing it on the news, was there a few days after they opened it, had a miracle experience on the bridge (which I will write about another time) and since then I hang out there quite a bit.  Definitely I go there for special occasions or when in that kind of need.

I do this ritual each time, either by myself or with whomever I’m walking with.  I think of something in my life that I’d like to transform or sometimes just simply a wish.  I step on the bridge heading the North direction and as I place my foot there I close my eyes and ask that anything inside me impeding this wish to come true be washed away from me.

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As I (we) turn to head back, I ask that everything be brought to me that I need to fulfill this wish.  Then I invite it all in to my body as I’m walking.  I’m telling you, this is a powerful ritual and one that has transformed many things in my life.

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Alfonse and I stepping back last Sunday

Now with that prelude, I’m going to tell you about how just two days after being on the bridge and asking for transformation, I ended up screaming on the phone at a member of John’s refusal to ACT Team and even dropping at least one F Bomb.  This little encounter falls under the categories of “It’s About Time” and “The Last Straw”.

Let me back up a minute.

I know what you’re probably thinking, regular readers.  I thought he was already out of there.

Well it wasn’t quite that easy.  You see, fortunately and unfortunately, John has been on a highly regulated medication called Clozaril for months.  It’s kind of a med of last resort for Schizophrenics but as his Dr. said “when it works, it’s a miracle”.  In John’s case, it was that miracle.  His deeply ingrained voices literally disappeared within two days after weeks of tormenting him.

The bitch though is it’s very regulated by the FDA causing him to have to have weekly blood draws to check his WBC and then it’s only dispensed a week at a time.  The facility where the terrible ACT Team resides has been handling both of these tasks.

I spent my entire afternoon that Friday before heading down to the Ranch calling different pharmacies to see if they dispense it to be hit with a big fat ZERO.  Most of them just don’t want to deal with the hassle.  They also have to keep records of the labs as does the Dr.  I tried my own small compounding pharmacy who did go the extra mile to get on the registry for it but then the funding issue raised it’s head.  They don’t deal with Medicare. I just didn’t have time to get it set up before I left the country for a week.

I finally broke down and called the *#^@^$ ACT Team to request they float him for one more week until I got back and could figure this out.  Aside from the med, I was also needing to set up the labs.  John just can’t handle these kinds of tasks alone and I’m a trained nurse and…it was just something I needed to do for him.

How interesting and fortunate and bizarre that the Clinical Coordinator said to me “we’ve not even discharged John.  He didn’t say clearly HE wanted to be discharged”.  I had to laugh as I knew he did say that clearly.  I knew it from John and I knew it from Manny who were both right there.  That was the entire purpose of the meeting.  I said it myself on the speaker phone!

This reinforces my belief that this team is invested in keeping names on their books (in one email forwarded to me, John was referred to by some kind of acronym like “the bhc”, not even his freaking NAME).  They need to have those names to keep their funding coming in to keep their jobs but they provide next to zero services for those participants.

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his name is John Monkman you assholes

Believe me once this is all settled and finished I will find a way to blow the lid off of this and expose them.  I’ve written letters and filed a formal complaint but I will be taking it to another level:  newspaper, legislature, something. Someone has got to say something.  Think of all the other patients suffering in this highly dysfunctional program who have zero advocacy.  I will be a voice for all of them.  I need to bring this to some kind of completion just for myself even.

Anyway, I’m told he’s not been discharged which honestly I’m totally relieved to hear in that moment because they HAVE to provide his weekly meds while I’m gone and that’s 100% of what I’m caring about in that phone call.

I just go along with it and say we will figure out the rest when I get back, being very nice and accomodating.  Knowing I’m completely using this system right now for only one reason and I’m perfectly fine with this.

Ok on to my meltdown.

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Imagine me at work on Tuesday, anticipating my father’s arrival that evening, on a small break between clients.  I see I’ve had a missed call from a number I sort of recognize but didn’t have listed in my contacts.  The number calls me again on the break so I pick it up.

It’s Lynn, John’s “Compeer”.  This means she’s a participant in the program (not ACT Team, basically the general mental health system) and is a volunteer assigned to visit and be a supportive friend to other patients.  She was set up by another coordinator before ACT Team got on and I don’t even think they know of her existence.  Which is good. They’d probably have tried to knock her off too as they did his counselor saying they’d provide their own, only to have a complete and total zero follow through on that.  TERRIBLE!

Lynn sounded somewhat stressed and relayed a story to me of that morning having gone for her usual visit with John at 11am.  They were planning to go to lunch.  She found him hearing lots of voices (that’s been months) and he told her the voices were telling him to stick a knife in his throat.

Yes, take a breath.  This psych patient herself arrived in to that scene.

As she said “I’ve had suicide training so I knew what to do”.  She called her supervisor, called me (I was with a client) and sat with John.

Here’s where the match lit the fire in me.  John told her he’d been waiting all morning for his daily “med check”.  You know, the one and only service ACT Team has ever provided?  The one he has never needed?  The one where he’s at the mercy of their schedule, waiting between a two hour window every morning so someone can come to the house and watch him put his pills in his mouth and sign a  paper?  That one.

And, they never showed up.  No call, no show, nothing.  John later told me this was the third of fourth time that had happened.  They don’t follow through on all the services they claimed were available that first day we transferred him there:  finding volunteer work, voc rehab, assistance with home tasks, social activities.  They have provided exactly ZERO of those services and the one and only service rendered has been the unnecessary and unreliable and disruptive “med checks”.

I’ve told them, John’s told them that he prefers to take his meds right upon waking.  He feels worse in the morning and gets up early and taking his meds helps.

Well this Tuesday, he had been waiting at least five hours for those *#$#^@ to show up and no one ever did.  All the while his symptoms started escalating in to voices and suicidal thoughts.

Lynn told me she’d stayed with him for an hour after he took his meds and his symptoms abated and he decided to go get a massage.  She called me then saying she felt confident that he was better, that he was not going to be alone and that she knew my father was arriving in a just a few hours.

Then she threw kerosene on that smoldering flame inside me, sharing this:

She told me she’d called the ACT Team to report this, was transferred to John’s now third case manager, someone I’ve never met and told her what happened.  She was obviously and understandably still upset and very worried about John (thank God someone was).  And she said to this person “someone dropped the ball here”.  This mental health professional barked back at her “NO ONE dropped the ball!”.

Then proceeded to hang up on her.

Another mental health patient reporting a crisis, involving a potentially suicidal participant in their program. And she was hung up on.

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Ok now my waiting room is filling up with smoke coming from my ears as I said “Lynn I need to get off the phone right now and make a phone call.  You handled this perfectly.  Thank you for calling me and I will let you know how he’s doing” through my grinding and set jaw.  My eyes filling up with blood.

I then called the ACT Team and after much shuffling around (you can rarely actually get one of them on the phone but every time I’ve been there they are all sitting around in cubicles. They certainly aren’t out servicing their clients I’ll tell you that!) I got someone.  Not the case manager who hung up but another person.

And I unleashed.  The words “you guys are TERRIBLE, just so TERRIBLE” were probably said about 15 times and she kept repeating back “I know, I understand”.  Of course she KNOWS!  She works there!  Isn’t that bizarre?

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pity the fool who messes with a Scorpio OR a cheetah

I told her the med checks are over.  That John will be getting up in the morning and taking his medications on his own.  I don’t care what they need in terms of their program, I told her.  I’m swimming as fast as I can to get him extricated this week and they WILL NOT penalize my brother for their own poor performance. That I have a lawyer.  That John is protected and I’m prepared to take this as far as I need to.

I told her John is UNSAFE in their care.  I was just all over the map venting.  I have to say, it felt good. That volcano needed to erupt. F bombs flying and all.  Someone needed to hear the reality of the other side of their incompetence.  Sometimes someone needs to just display that outrage!

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She kept saying “do you want to talk to my supervisor?  John’s case manager?” to which I replied “the time for talking has ended-everything will be in writing now.  We are past a stage of talking.”.  I assured her I would be getting John out of there within the next two days and if he needed his meds filled there this week if we couldn’t find another pharmacy yet then the WOULD be filling them for him.  They will not allow him to walk out of there without a plan for his critical meds.  And my lawyer will make sure of that.

Then I hung up on her.

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Whew!  That was a lot to relive right now.

Sometimes you just do have to go kicking and screaming from a relationship.

The good news is we met with the entire team yesterday (minus Lynn)–Dr. Yasinski who will be taking over, Manny Walker his advocate, me, my Dad and set up the new plan of action.  Manny will be walking in to Hell the ACT Team this week with John and making sure he gives them formal notice of his intent to be discharged clearly and likely in writing.  Manny had to laugh that they didn’t think John had done that already but again it kind of did work in our favor for just one week.  But still….really?

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A Psych patient is more competent at monitoring my brother than this “intensive monitoring program” for the  most acute patients in the system?  Really?

Oh and as a final note on them.  No one, not one person, ever called to check up on John after being told he was suicidal that morning.  It’s just astounding, the apathy.  I don’t even have a word for it.

Yes this will all be documented somewhere where it matters.  These people need to be exposed.  This sham of a program using the mentally ill in my community needs to have a light shined on it. This is tax payer funded!  And I’m just the snappy Scorpio to do just that.  My heart breaks for each and every one of their participants knowing what I know.

They are simply being used.  As if they aren’t disenfranchised enough. The very system designed to help them is abandoning them and using them for financial gain. And that is exactly how I see it with no evidence to the contrary.

So I asked for anything impeding a wish to be washed away on the bridge on Sunday then this erupted two days later.  Interesting huh?

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someone else thinks like me on the bridge

John is doing well now.  He’s happy my Dad is there indefinitely (at least until Feb sometime) and feels good about the new direction he’s headed. That we’re all headed.

We will all be going to Sedona this weekend and showing off all our hard work on the house to my Dad who’s not seen it since it was empty!  I’m excited about that. And Steve’s coming along too.

I’d say we have a lot to celebrate having survived this war.

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saw this blue heron on the bridge

together

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I’m dedicating this post to this comment by my dear Peepers McPeep:

Katie, such a lovely poem.
You’ve given John a great gift.
That of Hope..
His is a new beginning, learning to walk again with confidence.
You, as his guide, lighting the way.
Give yourself permission to rest along his journey,
There are days when he will carry you.
You will find what you seek,
Cradled tightly as you listen to the heartbeat of your love.
That will be your Destiny.

She left that yesterday responding to my post about Faith.

I can’t tell you how close John was to being hospitalized again over the last 24 hours.  It was as bad as it gets.  Both of the programs he participates in were responding in crisis mode.  I moved him here indefinitely.  His case manager met with me twice today very concerned about Alfonse and problem solving how to keep him out of the hospital.  He said to me “you know you are the reason John is alive”.

I thought about that comment later and thought, no, I am a big part of the reason he’s done as well as he has over the last year, truly a miracle in comparison to the last 20  years. But what’s kept him alive is far and above me.  He’s been in so many dangerous situations, taking his hands off the wheel of his car when voices told him “it’s time to go to heaven” on a major highway, etc.  I don’t want to revisit these.  But something, someone far beyond me has kept John alive all these years, that’s for sure.

As I left John at the program, I gave him a big hug and told him I loved him and the nurse he was visiting with said “You have a good sister” as I walked out and he said “yes I do” in that flat distracted way he gets when he’s bombarded by voices and paranoia.  I am so aware when I go there just how rare it is that mentally ill patients have support.  I often feel like a unicorn when I’m in there as so often patients are sitting there alone.  Just like John was for so many years before he moved out to Arizona.  It just breaks my heart thinking of it then, seeing it now.

I came home, with thankfully almost a full day off, and crashed hard.  I barely got off the couch all day, laying there dozing on a heating pad.  I have to say I was in some pretty extreme pain all day so I just rested and did my best to rest and breathe and wait it out.  Gallstones make their presence known on their way out, I’ll just say that.  They don’t let go that easily.  They like to make a grand exit.

I had no idea what I’d get around 2:30 when the shuttle dropped John off.  He was really pretty bad when I left him at the program this morning.  I didn’t know if I’d have another night of acute psychosis and how I’d deal with that not feeling great myself.

On first look, he was already more connected when he walked in the door.  I think the hardest thing about mental illness is the way it hijacks someone’s personality.  It’s like John disappears behind a wall of that.  And that is so far from his sweet charming little personality, it’s just depressing.  It’s almost like a death in itself.

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So he came in and went straight out to smoke.  I asked him to do some sweeping for me so he didn’t track in the palm debris when he came in and out smoking and he did so readily.  He’s usually very cooperative and doesn’t complain when I ask him to do things.  He doesn’t often initiate but that’s ok.  He cooperates.

He saw the heating pad by the couch and asked if I was in pain.  I told him that my back and stomach were killing me all day and I’d been working on it.  He said “Oh I’m sorry you’re not feeling well” then stood up from the couch.

He walked over to his suitcase , opened it, pulled out a bag and in it was a medication vial.  He handed it to me and said “I have these ibuprofen tablets from the hospital and I think it will help you.  Why don’t you take one?”.  I sat there, stunned that he was initiating this help to me.   I just said “ok that’s a great idea, I hadn’t even thought of that”.  He instructed me not to take another one for 8 hours and no more than 3 over a 24 hour period.  Like a good little nurse.

How sweet was that?  And you know what?  It worked!

I leaned down to hug him as I left to work for a bit and he hugged me back so tight saying “I love you my dear Sister”.  I thanked him for helping me with his ibuprofen and told him it was really helping, because it was.

I made it in to treat my client and back home again pain free after a day of misery.

As I walked in the door, I saw John on the phone and stepped right in to these words “Why don’t you call me next week?  I’m staying at my sister’s for awhile.  She’s not feeling well so I’m staying here to take care of her”.

Ok, if that just didn’t bust up my paradigm right there.  I love being proven wrong in cases like this.  He thinks he’s staying here to take care of me.

And so I’m going to let him.

We had a lovely dinner together undistracted by the voices that consumed him just this morning.  And now he’s resting quietly over on the couch stretched out watching The Next Food Network Star.  The key word of that sentence is quietly.

Alfonse and I will get through this life together, extending a hand, hopscotching ourselves over each threshold we encounter.  Together.  Hand in hand.

Protected.

together

(took this photo the first step we took in to our Sedona home last February)

enchantment

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When John came out to Arizona for a mental health program in the summer of 2012, he told me he would only move to Arizona permanently if he didn’t have to live in Phoenix during the summer.  I can’t blame him, the summers here are brutal.  I didn’t know how I would make good of that promise as there was no way I wanted him to return to the life he’d had in Illinois where he’d become so unstable.  Even for a day much less a summer.

One month after he’d arrived, I took him to Sedona for the 4th of July.  I’ll never forget the look on his face as we turned that corner and he saw the red rock view and he kept exclaiming “Kathy, I love Sedona…I love the red rocks…I love Sedona” over and over.  It was like a magic spell was washing over him.  We stopped for lunch at the swankiest resort in town–Enchantment. We had a drink and a snack and on the inside I was marveling not just at the view but the fact that I was sitting here in this environment, with my brother, simply dining, chatting and taking in the view.  Without his being consumed with symptoms.  It was at this place that I realized we were really out of the weeds with his illness.

Fast forward a few months to January 2013.  We find ourselves back in the same restaurant eating lunch. I took this photo of him that day.  Our Dad had told us some months before that he wanted to purchase another vacation type property for our family.  After much thought, we landed on Sedona for many reasons but the look on John’s face that July day was certainly in my mind. Sedona would be a perfect location.  He could get away for the summer but not be too far.  I have spent years working and training in Sedona so it was just perfect.

By this day in January, I’d been looking online for properties for a couple of months.  We went up there for other reasons but John and I decided to have lunch, then go roaming neighborhoods to see what we could see.  Just a little recon expedition.

We drove in to a condo neighborhood that I’d seen online with just one property up for sale. We stopped by that location, John got out and grabbed the flyer in the For Sale sign then looked ahead and said “hey there’s another For Sale sign up there”.

We drove up to that property, he got out and grabbed the flyer again and to our surprise it was a brand new property, never lived in!  So we got out and peeked in all the windows and liked what we saw.  On a whim I just called the number of the realtor on the paper and she picked right up.  She asked me where we were, I answered “right in the driveway” and she said “give me five minutes, I’ll come right over”.

She showed John and I that home that day and by the end of our tour, my brother was showing me where we could put the Christmas tree.  Every window had an amazing view, upstairs and downstairs.  Three bedrooms, three bathroom, perfect for us.

We convinced our Dad to take a look the next day and let’s just go ahead and say, my father bought that house two days after the day John saw that sign.  It’s our new house!

John has not seen it since the day we toured it.  He spent a month in the hospital with a drug reaction this winter so missed the trip I took up there to accept a furniture delivery.  When I was up there by myself, I realized the builder had left one item behind that they had “staged” the property with.  It was left in Alfonse’s bedroom.

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Life isn’t about waiting

for the storm to pass…

It’s about learning to

Dance in the Rain

When I saw this proudly hanging on the wall facing his new bed, I felt like I was seeing that cane by the fireplace in the movie “Miracle on 34th Street”.

Tomorrow we head up together to accept a delivery of all of his furniture/furnishings from his apartment that’s been closed up in Illinois, finally.

For some reason, Alfonse had been accumulating new furniture, new dishes, new flatware, glassware, linens, etc over the last year.  Funny how everything has a “Sedona” vibe in earth tones and “Santa Fe” style.  It’s almost as if he predicted this home purchase.

And finally he will be reunited with all his personal belongings he’s been without for a year now.

And I’m sure I’ll take him back to the Enchantment Resort for a little celebration while we’re up there.

Enchantment, indeed.

I’ll be back in four days or so.  With more stories. 🙂

valid

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cindywells

I look at this photo of Cindy, Buddha and I on the porch steps of our family’s Maine summer cottage, just moments before we were taking off to head back home in the summer of 1988 and remember how carefree we all were then. I remember how Cindy and I went out one day shopping and bought those hats together.  I remember showing them off to my Dad who said “Kathy, that hat is you” and how Cindy kind of wistfully replied “I want a ‘you hat too’ “.

I remember that year she just wasn’t usual confident chipper self.  She was just weeks shy of turning 30.  She decided when we got home that she needed to work on some things so she joined a self esteem group.  She had been enrolled in that group just a week or two when she met Michael Apelt and everything started spiraling downward, unbeknownst to any of us.  None of us navigated our childhood unscathed.  I’d been in counseling for a few years at that point having suffered a severe anxiety disorder in my twenties so I whole heartedly supported her reaching out for help.

One of the assignments given in that group was they were to ask someone, a loved one, to write a list for them of all the things they loved about them.  Cindy asked me of course.  I wrote this crazy list of deep and superficial things extending in to all the margins in a green marker type pen.  Her therapist, who had to testify at the trial of Cindy’s killers, told me that she’d had them all read their lists out loud in the group. That Cindy was crying so hard she could barely get through it but the therapist kept encouraging her to read it and she did.

Can you possibly know how precious her sharing that with me was?  And is now?  That she was given that assignment and chose me to participate leaving me behind knowing she knew all of the ways I loved her before she died?  In writing no less.

I look at that picture of those steps and it also conjures up a more recent memory having to do with John. In the Fall of 2011 I made my annual trek to Maine to the family cottage.  My Dad had of course flown John in from Illinois where he was still living to join us.  Having John on vacations, until recently, was a mixed bag for all of us.  Sometimes he would function, much of the time he was completely consumed with symptoms and disruptive.  I remember saying to my father before coming that year that I’d like for John to only be there for half of my trip that “I’d like a vacation not consumed with mental illness” for my own sanity.  Now, with all that’s happened, I can’t imagine feeling that way as so much has changed in a short time, but it was the truth in 2011.

That year John was particularly symptomatic.  That means he heard voices constantly, was totally paranoid, couldn’t engage in converation much and mostly sat and talked to his voices and chain smoked.   Where his “smoking section” is is at the base of the steps in that photo.  That vacation he had escalated so dramatically, yelling at us and filled with what’s called “religiosity” talking the Devil, Hell, etc., that my father and I took him to the Psychiatric Emergency room for a shot of Haldol.  We talked about hospitalizing him.  On our vacation.  This is the reality of what we lived with for many years with John.  What he lived with with himself.

I hit some kind of wall that year.  I borrowed one of John’s cigarettes (well, I wasn’t intending to give it back) and went and sat on the front steps facing the ocean and decided to have a cigarette with Cindy.  I sat there, by myself, smoking that cigarette and literally talked to her out loud.  This was a huge breakthrough for me because even thinking of her at the cottage was excruciating even all those years later.  The last place we were all together.  It’s somehow easier to think of making new memories instead of resurrecting the old ones.  At least it was then.

We smoked and we talked and I simply asked for her help dealing with John.  That I was lost and I needed her to help me.  I couldn’t do it alone and I saw no light at the end of the tunnel.  I saw a future of care taking both him and our Dad as they both aged and had more needs.  And I just never had anyone at my back.  At least that’s how I felt being single and managing my own life alone for so long.  I was born a middle child.  I wasn’t supposed to be on the front lines.

I have to say I felt somewhat better after that smoke break.

Shortly thereafter I went looking for my Dad and walked out the back steps of the cottage, those steps we are sitting on in the photo, past John who was sitting on the landing smoking, talking to himself as usual.  What happened when I walked past him again is where the stars started to align and where I got my first sign.

I noticed John sitting there turning something over and over in his hands.  I sat down in the chair next to him and asked him “what’s that?”.  What he was holding was a small decopauge plaque.  One that Cindy had made in the 70’s, this being our “summer craft” that year.  He showed it to me and what it said on the front that she had burned in to the wood with my Dad’s wood burning tool.  Emblazoned in this plaque were the words “Take the Valid Choice” with a tiny flower burned next to the words.  It had a sand dollar and shells glued to the front.  Her initials and date was burned on the back.  John kept repeating that phrase over and over “‘take the valid choice’, Kathy, isn’t that funny? Remember how she always used to say that?”.

Now this phrase had become a bit of a joke in our family.  Our Dad, a Psychologist, would always turn decisions back on you when you asked for advice and ask questions back like “which do you think is the valid choice?”.  It drove us nuts as we wanted him to just make a decision and tell us which way to go and he just never did that.  So, probably Cindy, at one point blew out with exasperation something like “can you please just make the valid choice for me?”.  It was hilarious so turned in to a family joke.

I asked John where he got that plaque and he replied “from that shelf above the kitchen door”.  Now that shelf is high.  It’s not something that would normally catch your eye.  It’s something you’d have to be looking up to see.  Moments after my smoke break with Cindy, John was drawn to look up to that shelf, reach up and take that plaque off and go outside with it and show it to me as I passed by.

I knew then and there that Cindy was in the equation.  That she was with us.  That she was going to help me. Help us.

Less than a year from that moment  by John’s 50th birthday, he had disappeared, literally disappeared for weeks on end, not once but twice.  Missing Person reports, police tracking him down and the whole nine yards.  This was new behavior.  Things were just getting worse.

After the second time I broke down on the phone with my father, bawling, telling him I just couldn’t handle it.  I didn’t know how to manage him, how to deal with this and have my own life at the same time.

And what my father replied truly shocked me.  He told me I was entitled to my own life and that he thought I needed to let my brother go.  That he could see the pain this was causing me and that John had to wind his way through this life and if this was the way it was happening for him, I had permission to detach.  To let him go. 

I just broke down that night.  Tears in to my sleep.

And woke up the next morning and called my Dad and said “thank you for the permission Dad but it’s me we’re talking about here.  I can’t do that”.

And then the world opened up for Alfonse.  I got the instructions of what to do and followed them.  He was escorted back in to life by a team of angels who guided me and my decisions/actions every step of the way, who gave him his life back.  I listened.  I took the “valid choice” which really was the only choice and have been guided by them, by Cindy, by our mother, ever since.  More of that story to come later.

Just say that John is beating all the odds and is recovering from Schizophrenia in some kind of “waking up from a coma” sort of way.

And anyone witnessing it is fortunate to know that miracles truly are available on this planet.  And when I say anyone, I mean, especially me.