Saturday, July 17, 2010

Lousy Lousy Lousy

Today, my husband and I went to our little storage unit to pluck some furniture out for Pony Girl, who is getting ready to go to college.  We have had this unit for more than four years.  We used to have a little house up north, and sold it when we realized it was more than we could handle.  So, into storage went the extra furnishings - waiting for JSB and Pony Girl to set up housekeeping.

Long story short, what we have pieced together is that the storage company somehow mixed up our account with another.  They thought we had the storage unit next to ours.  They thought the "alleged owners" of our actual unit had gone into default and so they auctioned off all of our stuff.  So far, the replacement cost is looking to be close to $10k.

The guy behind the counter couldn't reach the owner, so we get to stew until Monday or Tuesday to see if they are willing to compensate us fairly for our belongings.

I hope I won't throw a blood clot in the meantime.  Grrrrrrrrrr!

Friday, July 16, 2010

Blogger Award?

A while back, I received an acknowledgment from fellow blogger and teacher and friend Heather.  So, thanks, Heather for the Beautiful Blogger Award.  It's just now that I have a chance to settle in and consider the requirements as a recipient.
Thanks, Heather, for acknowledging my voice.  Blogging is not something natural for me; at times it's just plain awkward.  But, I'm just going to say it and see where it goes.

In accepting this award, I'm supposed to follow some rules.  Um, I like most rules, really I do.  But sometimes, I'm a bit of a rebel.

Here are rules to accepting the nomination:
1.  Thank the person who nominated you
2.  Copy the award and paste it on your blog
3.  Link to the person who nominated you for the award
4.  List 7 interesting things about yourself
5.  Nominate 7 beautiful bloggers (or however many)       
So, here I follow the rules with pleasure!.  Thank you Heather at Keeping A Quiet Heart.  I know there are many of us who pour a bit of ourselves into our blogs to connect, to speak, and to have a voice.  Sometimes it feels like you're typing into a big old cyberblog of  nothing -- it means a lot to know that someone is listening and responding.

So, seven interesting things about myself.  This makes me laugh.  There are more than seven things that are probably interesting, but I'm not going to tell you them!!  But, really, seven things that would interest anyone is a stretch.

Here goes ........
I grew up without a Dad influence ~ mine chose to start another family with someone other than my mom when I was two.  I didn't know what I missed out on until I witnessed my husband parent my kids.

I always felt like I didn't fit.  Things were easy for me, and other kids resented that, but they had no idea of how "outside" I felt.
I have learned more about life than anyone from my son JSB who has schizophrenia.   He gave me a whole new way to see the world.  To him, I am eternally grateful in more ways than I can express.

I've always felt fat - even when I wasn't.

I would love to write the Great American something.
Okay, let's get real dreamy -- I wish there was no stigma for mental illness and that there was a "cure" for schizophrenia.  
One more? 
 That's a secret!
I'm supposed to name seven bloggers as recipients.  I'll get back to you:)

Thursday, July 15, 2010

Moving Forward - A Balancing Act

Just got off the phone with JSB's social worker.  There is good news.  He is going to spend two nights at the transitional apartment and then go back to the hospital on Friday.  This is a test drive to see how he likes the new digs, and to see if he will be able to handle the conditions of living there.

There is also a plan to switch to an injectable medication -- one that remains in his system for a longer basis -- because of his history with nonadherence to meds.   Like many individuals with schizophrenia, JSB lacks insight into his illness.  He doesn't believe he's sick.  Doesn't believe he needs meds.  I would love for that to be the case, would love for him to be able to manage without them.  The fact is, the idea of him going back to where he was last winter terrifies me.

Wow.  I just realized there is so much I could say about mental illness and medication.  Last night, at the board meeting of the mental health advocacy group upon which I sit, one of our members is a OT working on her dissertation about schizophrenia and med adherence.  She is doing great work trying to understand the attitudes of people who are prescribed anti-psychotics.

It's a difficult, controversial, and not a one-size-fits-all topic.  She indicated that based on her qualitative research, individuals are afraid that the medication will diminish their sense of "self."  Reason to be frightened indeed.  JSB believes the medications are what made him sick in the first place, and believes that he does not suffer from a mental illness.   In his case, and I speak only of his case, I believe that medication is a critical component to his continued recovery.  Medication is a tiny piece; there is so much more.  Medication does not define him - nor does schizophrenia.  But without medication, I have seen schizophrenia devour him.

I blogged about a fantastic program -Minds on the Edge blog a while back.  It really addressed head on the difficult issues of patient rights and involuntary treatment.  I have utmost respect for Pete Earley, Ellyn Saks, and the other panelists on the program.  It is a courageous conversation and it needs to continue.

And here's their website Minds on the Edge
At any rate, I didn't mean to digress on meds.

While this isn't what I imagined 22 years ago, when JSB blinked up at me in the delivery room, it's what it is.  I look forward to supporting him as he takes these steps toward independence and self-reliance - and pray that he accepts the assistance available to him and the terms of his occupancy.  Like any mom who dreams of her child taking their fledgling steps towards independence, I am holding my breath, stepping as far back as is necessary in order to give him room to gain independence, and sending many prayers his way.

Wednesday, July 14, 2010

Not Made By Hands fin

My first icon, Savior Not Made By Hands, is complete. 

I have to say, I am amazed by it.  It's important to point out that there is absolutely no way that I could have completed this by itself.  Note my previous post, Sharing the Pen.  My teacher is truly a master, and I feel grateful to be working with her.

It was my plan to keep this first icon for myself.  He would have a cozy little spot in my little "Inner Sanctum" room upstairs.  It's there I go and shut the door to pray, meditate, read, or just be.  It is filled with things I love - art from my children, my Grandmother's Bible, pictures of my grandparents and family, some icons, a collection of crosses, candles, a censer and holy incense, and books.... lots and lots and lots of books.

When I finished him, I immediately knew that he was not going to live in my little room.  I was compelled to give him to my church.  There was no choice in the matter, I simply knew that is where it was intended to go.  Iconography (and I associate myself with that term as a complete and utter novice) is an ecclesiastical art.  That is, it is intended for the church.  My teacher, Ms. Russian Master, reminded me to be sure to have it blessed on the altar and to use it in the church for prayer.  With her thick Russian accent, she exuberantly explained to me that it needed to be used for prayer because prayer is what ... what... she searched for the English word.  I think I understand, prayer is what deepens, enhances, and strengthens the mystery of that icon.  It's as if spiritual life is breathed into the "soul" of the icon through the prayers of the faithful.

An icon is not a pretty picture to hang on the wall.  It is much more about prayer and mystery.  Iconographers follow strict rules prescribed by the Orthodox church.  Every line and color has meaning.  The person or event depicted in the icon is a window that draws us into the sacred mystery of faith.  While writing it, you are suspended in prayer to the figure depicted in the icon.  It is a spiritual discipline rather than an art form.  It is not about the artist expressing herself; it is about Christ (in this case) expressing Himself through the prayerful writing of the icon.

So today at Wednesday Eucharist, my Priest Friend blessed the icon for me and asked me to say a few words about it.  I told the story of the legend of the icon -- how a Syrian king with leprosy was healed by a towel bearing the image of Christ's face.  I told how I was surprised that my first icon simply had to be this one; and how it made sense because when I began writing it, JSB was terribly sick and had just entered the hospital.  It made sense that I had to write an icon about the healing power of Christ, even though I had no idea of the story when I chose it -- or it chose me.

I told how I could attest to the healing power of Christ and how powerful the experience of spending time in prayer with this healing Savior was.  I told how JSB is preparing to move into a transitional apartment soon, and how fitting it was that I was working on this icon at the beginning and end of his six-month hospitalization.

But, most importantly, it was so clear to me how blessed I would be if others could spend time in prayer with this healing Christ, and if they experienced the healing power of his love, and if, in turn, their prayers fortified the mystery of this icon that leads us to Christ.

Saturday, July 10, 2010

Take Me Out to the Ball Game

About a month ago, JSB called his dad with a simple request.  Well, simple to most people I guess.  To us, magnificent.

"Hey dad, OU is playing baseball at UVA this weekend.  Can we go?"

Furball and JSB are rabid Oklahoma fans.  Furball grew up there and inherited this phenomenon from his dad.  This passion was, in turn, passed on to JSB.  On game day, the maroon socks and jerseys come out, and the afternoon is spent in intense and colorful commentary.  Emphasis on intense.  

I don't get it, really.  But, I do respect it.  I know that for my husband it brings back fond memories of his relationship with his dad (now deceased).  I also know that when JSB was in the throes of his untreated mental illness, this familiar ritual was abandoned.  Well, life as we all knew it was abandoned.  I didn't realize how deeply the absence of this tradition impacted my husband until one game day last fall.  He was watching the football game alone.  His voice broke with grief as he told me how much he missed watching the game with JSB. 

Like many men, Furball rarely reveals that depth of emotion to me or to anyone.  It helped me to realize, yet again, how important his love for and relationship with our children is to us all.  I am grateful for that.

So, back to baseball.  Here's what's magnificent.  For a long, long time, JSB was living inside his head, unaware of the reality of things around him.  He was hounded and haunted by voices, delusions, and paranoia.  In that state, he's not aware of ordinary things like college baseball and football schedules.  He's too busy battling his own demons.

Going somewhere with a lot of stimulation and people was impossible for him.  Not only would it overwhelm him, but his behaviors stand out as not normal, and quite frankly, scare people.   I can tell you, no one in our family is interested in listening to the judgment and commentary of these armchair witnesses of mental illness.  Come into the trenches with us.... then we'll talk.

Of course Furball jumped at the chance, bought the tickets, and went to State Hospital to pick up his son and take him to a ballgame.  They wore their OU colors, sat in the maroon section with the other Oklahomans, bantered with fans, and cheered their team to victory.  Then rushed back to State Hospital to get JSB back to his ward before curfew.  A couple of unlikely Cinderellas.

I wonder if the fans at that game realized the miracle they witnessed in the stands that day.  Such an ordinary thing, going to a baseball game.  To the casual observer it's just a young man and his dad who share a passion for all things Oklahoma doing what they  love.  What they love together.

  To us, yet another reason for hope, for joy, and for boundless gratitude.

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