be the change

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Good morning!

I feel confident saying those words this morning because of one other little word:  sleep.

 

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I’ve been working on my sleeping lately because, like a little dividend on the side of a root beer float, I was gifted the treasure of insomnia as a side dish to peri menopause.  I’d been a good sleeper all my life so this little gem came straight outta the rough.  You don’t know what ya got til it’s gone, indeed.  But I’m improving and my little fitbit shows me literally in hours and minutes how I’m doing.  7 hrs 29 minutes last night.  Hurray!  Sleep, I do appreciate you and wish you’d visit like that more often.  😉

But that’s not what I came here to talk about this morning.  I notice that I have my best ideas, also, after a good night’s sleep (or in the shower after a good night’s sleep, what’s up with that?  The one place where you surely have no paper or pen to jot things down or in the car navigating a canyon where a poem to be shared later this week blasted in to my brain with two hands firmly on the wheel–sorry for the long parenthetical statement, couldn’t help it).

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I woke up thinking about intuition and about generosity and about how charity truly does begin at home (who said that anyway?  Is it in the Bible?).  I got to thinking about a sad fact I learned about Mother Teresa in a film I saw about her life at the Film Festival in Sedona this year.  It illustrated that although she was clearly out there doing amazing good works in the world and living with the abject poor, she lived of life of some pretty significant misery and depression personally which was reflected in a lifetime of letters she sent to her Priest (or Bishop or someone up there).  That hit me hard.  At what cost I thought to myself.

This song reflects the mood of this post so sharing here if you want a little background music.

All of that leads me to want to share a profound story of intuition and double rainbows from my life from the last two weeks.  This tale all is about listening to that voice inside that guides and moving with it.  Yes, it takes both but the moving part I’ve found can be the trickiest as we humans, especially in our culture, are experts of talking ourselves out of what we know to be true:  whether it’s a tough decision to leave someone/somewhere/something, an opportunity to grasp, a word to share, a moment of self preservation–we can deny it all out of, basically fear.  We all could be better at listening and moving.

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My dear brother had not been doing well for a number of months.  This is probably why I took a break from blogging as I was more involved there whether it was actually doing something or worrying.  I did get him back in the Momentum program that we moved him out here for and that’s been great for him.  But even they were worried about his regression in to depression.  It had just taken a hold of him for a period of months and wasn’t lifting.  I talked to his Dr. (who might I say again, is amazing) who changed some meds around but it didn’t really show signs of letting up.

 

A scary time for sure.  Because you see, dark and gloomy is not my brother’s personality– at all.  The opposite really.  He forgets slights, forgives easily, sees the bright side, gives compliments freely.  He just went through a long period of, as he would say daily, “hangin in there”.  All of the depression hallmarks rose up–grooming, lying in dark rooms for hours, dulled affect–the whole nine yards.

 

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Three weeks ago I took John to Sedona with me thinking a getaway would help.  It did and it didn’t.  And it didn’t before it did.  It did because of what ultimately came out of it but we had to go to Hell to get to Heaven.

Being around him like that 24/7 those days just caused something inside me to snap.  I was once again exhausting myself trying to light a fire under him and pushing or dragging or trying to get something moving.  I think all of the stars and constellations and planets aligned in just the right way to ignite a fire inside me to just say “we’ve had enough of this”.

I watched him be very high functioning in certain ways like making sure he has cigarettes or Diet Coke and meals but very very low functioning when it comes to other basic tasks.  Sometimes my being in denial of just how sick he is works against me and sometimes for me.  In this case probably a bit of both.

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I’m in a big exercise mode right now.  Having declared this summer The Summer of Fitness, I’m working out with a personal trainer three times a week and going to the gym other days.  I love it.  And what’s gotten me hooked more than anything is the cliched endorphin rush everyone talks about.  Trust me, I do not love doing pushups or kettle bell swings or running outside even for a short distance in this summer heat (or really at all) BUT the rush that comes after is so exhilarating it keeps me going (along with promises to my trainer and other sophisticated manipulations I’ve performed on myself 😉 ).  Having experienced the high from exercise I can speak intelligently to my brother about how he just needs to DO SOMETHING and get MOVING to be at least somewhat in control of his mental well being.  So I convinced him to take a walk with me and after about 3 minutes could see he was very winded.  This was my chance to put the moves I’ve so carefully rehearsed on myself in to motion on him.

By the end of that walk I had convinced him to start seeing a trainer.  YES!

I found another trainer in the same gym I go to, very near our homes, that is a more appropriate fit  and will work with him one on one vs the bootcamps I go to and got his first meeting arranged the next day.  Mark, this trainer, revealed he has a schizophrenic aunt so is somewhat familiar with this diagnosis…what a surprising blessing.

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Oh but that sounds so neat and tidy doesn’t it?  Healing is messy and this story holds no exception.  As I said, we went through Hell to get to Heaven.

That evening, without going in to details, we went to dinner at a friend’s in Sedona.  Let’s just say something happened there that truly embarrassed me with my friends and displayed John’s regressive inappropriate behavior that was still evident (don’t worry, this story has a happy ending).  I got so mad and frustrated with him because he does know better that we had a SERIOUS talk the next morning about options such as putting him in a group home.  Words flew out of my mouth like “if you are going to act like a toddler then we will find you a place where all of your needs are just taken care of like that”.  Of course I’ve always believed he’s able to do more but poor guy was just flat out STUCK.

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I wasn’t consciously trying to light a fire under him in those words;  I was really just acting out of my own frustration that had hit a boiling point.  I just kept telling him how high functioning he is when he wants something but when he is expected to be respectful of other people’s *whatever*, he regresses and it just has to stop.  I just kept saying “you can do better but you choose not to!”.  I’m not saying it was pretty…it was frustration mixed with fear mixed with exasperation mixed with hope mixed with, well, I guess what a mother would feel like.

He was extremely remorseful, called our friends to apologize multiple times, begged me for “one more chance” to not to go to a group home.  In the middle of all of this, his case manager called me from the program and voiced her concerns about the regressive behavior and the depression.  We also discussed the group home option (which trust me breaks my heart in a million pieces– the LAST place I want to go visit my brother is that kind of environment) .  His Dr. also contacted me who’s been kind of pushing that option, privately to me, for a period of months.  I just kept thinking “I cannot and will not give up on my brother! ”  quickly followed by “if nothing changes I’m gonna lose my own damn mind”.

We packed up the car, well I should say I instructed him to do this and that to close up the house and pack up the car and he did everything I asked, slowly, but he did comply.  I instructed him to get his Ipad and put it in the front seat and on the way back we got busy.

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You see, I had had an aha moment in the shower and I had a plan.  I leveraged this “group home” business as my consequence and told him “you have one option to avoid that future and this is it” and laid out my plan.

I had him google “Overeaters Anonymous” and told him he needs to start attending those meetings.  I had already set up the trainer appt. so insisted he comply with whatever plan the trainer put him on for exercise and the third prong of my “Lifestyle Lift” was this:

You will audition for the Phoenix Men’s Metropolitan Chorus and if you don’t make it, you will become a volunteer there.

What most people don’t know about my brother, which is his secret weapon, is that he has an amazing pitch perfect voice.

He is primarily a bass (or whatever the low notes are–baritone?  I don’t know) BUT he can pull off the entire scale flawlessly.

Two years ago we went to see this Chorus perform their holiday extravaganza.  I think the word “flourish” best describes everything about it.  There were multiple costume changes, set changes, a faux ice rink in front where professional skaters skated to their sounds, a drum line, etc. etc.  It was a performance.  Yet, without in any way sounding disrespectful, I thought as we heard the various soloists “my brother can sing just as well as that”.  It planted a seed and I’ve been investigating it since.

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They say on their website about auditions that even if you aren’t needed that season (ie you have one of those terrible voices like we used to see on those crazy American Idol audition reels), we always need volunteers and need you part of our organization.  One stop shopping!

I had already started an email exchange with their President as auditions are coming up in August.

John called him from the car and left a message.

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Let’s review:  my 3 pronged plan for rescuing him is this:  OA meetings, personal training and singing.

None of which involve mentally ill people or the mental health community.

It’s a gutsy move but one I believe(d) in wholeheartedly.

I explained to John how all of these elements influence each other and will build on the collective momentum in order to help him from sinking so far down again.  Exercise/support/feeling better in his body/creativity/community.  All big holes in his life.  All I knew was we had to change something and this was what I came up with.

See the thing about me is when I know, deeply know, it’s time to move on something and how to move on it, I just know and I act.  Not all the time of course.  Sometimes I don’t move and torture myself a little bit more but those are my learning curves.  I’m getting better at trusting these inklings and moving in to them seamlessly.  For example,  I found my house the first day I went out looking and in ten minutes knew it was the one and bought it by the end of that day, we found our Sedona house that way–the very first day we went out looking– and despite my Dad’s doubts I just kept saying “this is our house” and it is.   I found my new office space just like that.  I guess I’m very very good at applying this to Real Estate.  😉  Every single one of those bold moves and serious investments includes it’s own tale of magic.

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I had John sing for me the whole way down the mountain that day.  As we were raised on show tunes by our NYC born and raised father, we know all the words to many many musicals.  We landed on “Doe a Deer” as a good audition song and, let me see, the best way I can describe how it is listening to Alfonse sing is this.  Ya know how on American Idol (again) sometimes you’re sitting there white knuckled hoping the person hits their notes and sometimes you have this confidence and relaxation knowing they are gonna land on every one like a hammer straight to a nail head?  The latter is the feeling I have listening to my brother–a confidence.

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Now most stories do not have a straight road straight to Nirvana and ours didn’t either.

I dropped him off after that ride and went to work.

I came out of my work day to multiple texts from our friends in Sedona, John’s Dr. and messages from my Dad.  “Why is John calling me 8 times today? Is he ok?”.  Etc.

Uh oh, I thought, this shit has hit the fan.

I called John and he was all riled up.  Very upset.  Very angry!  At ME!

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I drove over there calling his Dr. on the way who texted me back “I’m 30  min away if you need me I’ll come right over”.  Gotta love the concierge service.  He knew how mad John was at me and worried about my safety.  I’ve never for one second worried about my, or anyone’s safety really with John.  He said “call me as soon as you leave”.

Oh yes John was pissed.  I mean really caustic and sarcastic and mad at me harshly telling me I had no right to threaten to put him in a group home, that I’d have to take it to a Judge, how our Dad was on his side, on and on.  It was all tumbling out as he sat across from me chain smoking.  Trust me, I was feeling defensive and reactive myself but, at the same time, I was aware “he’s making sense”.  That every point he was making was not paranoid but reasoned.  That he was just mad as a cat with claws out for being threatened.

So here’s where the magic happens.

We are sitting there embroiled in this catfight–mostly him hissing and me reacting.  My biggest fear in that moment was that he was going to abandon my three pronged plan which I KNEW was his salvation.  When I asked him he said “no, of course I”m going to do it, it’s a good idea but I will NOT go to a group home Kathy!”.

Somewhere smack dab in the middle of this the phone rings.  His phone.  He picks it up and answers and I watched a bonafide miracle unfold before my eyes.

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It was the freaking President of the Men’s Chorus finally getting back to him live.

OMG I thought as I sat across from him, what a terrible time to make a first impression.

But my dear, amazing brother, switched gears seamlessly and shone like a diamond in that call.  He snapped right out of his anger, popped channels was 100% appropriate on the phone.  “Yes my sister and I attended one of your shows and were so impressed I’d like to become a part of this organization in any way you need me.  I understand that if you don’t need me as a singer, you need volunteers and I would just like to be involved in any way”.  He nailed that first audition right then and there with me sitting across from him mouth agape.  He made an excellent first impression.

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I don’t think in that moment I could have pulled that off–it’s not as easy for me to switch gears so quickly.  I need a cooling off period.

The President said he wanted to send John an email detailing the particulars about the audition so John, appropriately replied “I don’t have my email set up yet but you can send it to my sister–she’s right here so can give you her email address”.

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He put me on the phone with this man who was so overjoyed and delighted to speak with us you would have thought someone had handed him a large donation.  “I’m so excited to meet you and John!  Please will you come with him to the audition because we find that the more support people have the better”  (uh does a bear….you know).  He gave us a date and invited us to stay for rehearsal after “just so you have a better idea of what we do”.

Yes, yes yes and yes.

 

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As I hung up I looked over at John and said “you nailed that phone call!  Wow!” and our war was over.

I also said “you’re not depressed are you?”.

He replied “I’ve not been depressed for two days Kathy”.

Ya know they say depression is anger turned inward–that’s one theory anyway.

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I found myself saying I was so glad he got that anger out because I think it’s been trapped in him for a long time.

I also reflected on certain words I heard him say to me that all three of us kids growing up said to our stepmother during times of abuse over and over.  That just about broke my heart.  Those words were likely trapped in him for decades.

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I cried and apologized.  He said “I wasn’t angry Kathy, I was scared.  I’m terrified of going in a group home and losing my freedom”.

More tears.  What an incredible insight for a schizophrenic man right?

My brother was emerging before my very eyes.

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I apologized for being heavy handed and threatening that.  I explained it was born out of my frustration and needing to light some kind of a fire.  He replied “I understand Kathy, I know you care about me.  I know you love me and I appreciate all you do for me.  This is a very good plan and I’m going to do it.”

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And it was over.  And beginning at the same time.

I texted his Dr. during this whole thing, while John was on the phone something like “John just got a call from the Men’s Chorus in the middle of this argument and he’s nailing the call!  I’m flabbergasted!” to which his Dr., cracking me up, replied “lol that’s great”.  He’s just such a real person I love it.  “Lol” indeed.

John has been going to personal training three times a week and is already reporting feeling better, sore, but a good sore.  He has been to weekly OA meetings and is forming bonds there.  And, he has his audition for the chorus August 12.  I’m so excited I can barely stand it!  I just know they are gonna be blown away by his voice but in the worst case scenario he will volunteer with them and have a new community, a new tribe.  Finding our people is so important and he’s just been kind of isolated in the mental health world for too long.

“Lead with your voice, not your disability” I had said to him while discussing the audition in the car.

And look at him proving me wrong with my fears about that by just the way he handled that call.

His depression has lifted like a dark cloud moving over our homes.  Everyone has contacted me telling me about this distinct shift.

 

 

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I’ve asked him to do things with me and he replies , cheerfully “Kathy my schedule is just so busy this week, we can go to that movie next week”.

From spending hours laying in a dark room, he’s now too busy to sit in a dark movie theatre with me until his schedule opens up.

And I couldn’t be any more happy.

Charity begins at Home.  We’ve been seeking volunteer opportunities for John.  But I told him (tears as I write this now) “John, you can be your own charitable project because we can’t help others until we are whole–so how about you put all of that helping energy to helping yourself”.

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Let’s face it, he’s in the disenfranchised population well people sign up to volunteer with..to help.  He’s his own worthy cause.

I’m sure I could be out doing much more to save the world as well but if I neglect my brother then what kind of saving is that?  Or burning myself in to depression like Mother Teresa?  I find her inspiring in so many ways but this unknown fact about her life inspires me as well.  It’s ok to do whatever you can do to live a happy life;  to be happy.  Especially when life has dealt you a whole lot of rough blows like John and I have endured.  It’s ok to be your own liferaft.

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I think, for John, being surrounded by a community of men who come together to express their love of singing outweighs stocking shelves at a Goodwill any day.

It’s ok to shine like a diamond and the difference you make in the world is being the change you wish to see.

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Please think a good thought for us Tues Aug. 12 at 6pm.  His life is gonna open up in a big way at that moment.  And so is mine.

Just the thought of sitting in an audience watching him sing as a part of that…..ok here come the waterworks again.

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10 thoughts on “be the change

  1. spellbound4

    I am so happy for you and especially for Alfonse! I have worried about you lately, and am glad you shared what has been happening in the past months. Never in a moment did I expect to go from such a low to such a great high in the span of a post, but I have done just that. Right now, my excitement is so overwhelming me that I don’t have all the words to express this joy. We all need a purpose beyond basket-weaving or making hotpads —- John/Alfonse may have found his niche. I am on pins and needles wanting August 12 to hurry up and get here.

    Wishing Alfonse a successful audition and an opportunity to show off his talents. If a job comes from this —- well, we will cross that bridge next with another fabulous adventure. Just let him know my hugs and support will be flowing his way during that audition time— and I will be waiting along with all his fans to hear the results. Hope he so gs his heart out and enjoys the flow of opportunity he has — to just get an audition is fabulous in my book. Yay, yippee, hooray! You go, man!!

    Hugs!

  2. Beverly

    Best post ever! What a good ‘mother’ you are, recognizing his talents and thinking of ways he can use them. Everyone wants to contribute to a greater good – like making people happy by listening to a beautiful voice! Your love of him and enough sleep have led you. John is a genius and needs a strong loving hand like yours to be brought down to earth so he is able to cope with others who don’t understand him as well as you do.

  3. Kiminnm

    Wow! How wonderful to hear and such a good reminder that we have to keep moving forward!! Will be thinking of you and Alfonse and saying a prayer that all goes well for his audition!! Many blessings!

  4. Thanks guys! All the cybersupport for my dear brother (and beyond) sure means a lot. I’m glad to know he’s inspiring others too. 🙂 Thanks for reading and sharing. xoxo

    • spellbound4

      Kathy, I keep thnking about John’s singing talent & wonder if there is any way to get a CD made/published? I don’t know the first thing about doing such a project, but it might be something to mull about in the back of your mind. Perhaps you know people who could make suggestions or lend some musical backgrounds. Should that be possible, he might consider having a small premier and sell his CD.

      Anyway….just thinking and sharing for whatever it may be worth in the future. Something keeps niggling my brain that this is his ticket to something good.

  5. Cyndi Platfoot

    Wonderful! I can’t express much John’s journey had touch me! I’ll be praying for his continued happiness and for his audition with the choir! Kathy you are an inspiration and a terrific sister!

  6. Kat

    You have so grown in your writing talent. It has been inspiring to observe that your capabilities continue to grow. I missed your blogs during your off period but do understand how busy you can be. I have enjoyed your brother’s journey with its many downs to glorious ups. There is no need to be specifically detailed as to what goes or does wrong but you say enough to be understood. We all have come to know and want only the best for your brother. He does have the perfect Guide who is willing to acknowledge imperfections but will always remain his Guardian Angel blessed with the wisdom to show the Way. Take care.

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