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.














Saturday, June 12, 2010

Sharing the Pen

I recently began an Icon Writing class.  My friend Lovely (former) Vicar invited me to join this weekly class when she became aware that I wanted to learn to write icons.  Yes, you paint them, but the term is to write an icon.  There is rich and deep theology involved in the process of writing an icon.  More on that later.

Our teacher is a master iconographer and is Russian.  Every Saturday afternoon she moves among her students and patiently tells us what to do.  She demonstrates the next technique, and then tells me to do it.  Sometimes I don't always understand precisely what she is telling me because of her thick Russian accent.  Sometimes it doesn't seem to matter if I understand or not because my attempts are awkward and highlight the fact that I am truly a novice.


There are so many things I find fascinating about this process, but what strikes me today is how we share the brush.  She will come and inspect my efforts, take my brush and restore my unfinished icon. 

A few strokes here, a little correction there, and voila!  It's beautiful.  When I joke that she is making it beautiful in spite of my efforts, she corrects me and says, "No, WE did it."

So, here it is thus far.  The halo is gilded, the face of Christ is coming along.

The process reminds me of what I do with first graders who are making their first attempts at writing.  We call it "sharing the pen."  They aren't ready to write conventionally, but it's so important that we encourage them to make an attempt.  An attempt that we accept.  My first grader might have a pencil, and I a purple felt-tip  pen.  They try to write a word and write down the sounds they hear (usually consonants) and I add the sounds they miss.  Together WE write.


My master iconographer teacher is doing the same thing with me.  She does not quash my confidence and encourages my willingness to take a risk.  When we allow mistakes, we allow learning to occur.  It's interesting for me to be in the learner's shoes again.  I am surprised sometimes at how frustrated I am.  A good reminder for this teacher of babes.


This leads me to think of God and his hand in my life.  I do my best to be faithful here on earth, yet I know that I fumble at every step.  I am comforted by the knowledge that God shares my pen and my brush.  

Thursday, June 10, 2010

All Quiet on the Western Front

It's been a good while since I've written.  It just may be that life has been so normal lately.  I have been reveling in the mundane.  Ah, routine, regular life.  People don't realize how blessed that is.  I've been trying to pay attention to those mundane little miracles that surround me lately.

I sit on the board of directors for a local mental health organization.  Last night, I went to a meeting in the Department of Mental Health building.  I got off the elevator, and shuddered as I looked toward the room where I sat through more than one commitment hearing for JSB.  Just a little flash jab traumatic memory that made me wince.  I was so grateful to be attending a constructive and uplifting meeting and not a "We are going to cut your heart out now and stomp on it for a while, Mrs. Bell" commitment hearing for my son.


I was most grateful that JSB remains at the hospital with Western in it's name.  And it is all quiet there.  His commitment has just been extended another month, so we have until July.  That will make a full six months in the hospital for him.  Not to mention the two commitments before this last year.


He is doing so much better and for that I am grateful and immensely thankful.  I wish that I could say that there was no residue of schizophrenia left in him and that he has made a full and complete recovery.  Sadly, our nemesis schizophrenia loosens its grip, but does not let go.  I am so proud of JSB for hanging in there and working the program.  I cannot imagine what it is like for him.  It just occurred to me that I avoid thinking about that.  It's pretty unbearable when I really look at him with empathy and try to imagine his life and his sense of loss. 

The plan is that he will move into a transitional apartment in a small town about 90 miles from here.  A tiny apartment with privacy, a clubhouse with supportive programs and peers to help people integrate back into the community, and, I hope, receive a new lease on life. The tiny, ordinary apartment bursting with hope.  Hope for recovery and the portal to a life with dignity, depth, and meaning.


Thanks for your support, friendship and prayers for JSB and the rest of us.  It's been a difficult and treacherous road -  not unlike the unordinary and body-wrenching roads in Liberia.
It is so nice to know that we don't have to go it alone.  This torment of mental illness has been accompanied by an unlikely accomplice.  Grace.  Over and over again.  And I have learned to so adore the miraculous ordinary.



Friday, April 2, 2010

Blessed Good Friday

Pietà with Saints

1523-24
OIL on wood, 239 x 199 cm
Galleria Palatina (Palazzo Pitti), Florence

 

 

Pieta

Thus, Jesus, do I see your feet again?
Those feet which last time were a slender lad’s,
When timidly I bared and washed them here;
How they forlornly stood among my plaits
Like, in a thornbush caught, a milk-white deer.
So now I see your limbs, unfondled ever,
For the first time, at this our lover’s tryst.
We never in our time lay down together;
Now to adore and watch is all there is.
But look, your hands are mangled at the center – :
What bites, beloved – they were not my own.
Your heart is open, anyone’s to enter:
That was to have been my door, mine alone.
Now you are weary, and your mouth too wry
To have a longing for my suffering lips -.
Jesus, Jesus, whence came our eclipse?
How quirkily we perish, you and I.

(The Best of Rilke trans. By Walter Arndt)

Saturday, March 13, 2010

A Tender Shoot

My, how things have changed since January.  

Metaphorically and concretely, we are emerging from a deep, dark, frozen winter and begin our transformation to spring.  Daylight, a touch of warmth in the breeze, and my favorite.... green shoots pushing away the saturated,, muck-covered earth to deeply breathe the freshness of the air and to reach toward the warmth of the sun.

I love the way these tender-appearing shoots can shove aside the wet, laden compost of winter, laying claim to this side of the soil.  Refusing to remain stifled by the weight of darkness or obstacle, they stubbornly poke through and proclaim rebirth, freshness, and joy.

Reminds me of Isaiah 53...
        He grew up before him like a tender shoot,
       and like a root out of dry ground.


A similar transformation occurs in JSB and I welcome this emergence with gratitude.

Before he entered the hospital and began to accept treatment, he was barely recognizable.  His descent into the underground of psychosis and delusion left me feeling despondent and helpless.  I cannot imagine what a hellish nightmare it was for him.  He was buried alive by his misfiring brain and completely disconnected from us and reality.  I wanted to reach through the quicksand of his illness and pull him back to me. 

So, here's my confession.  I had nearly lost all hope and was beginning to believe that only death could free him from this hideous torment.  He was well on the way to leaving this earth.   If he had not been hospitalized, I know that would have been the outcome.

But, there were different plans for JSB, thank God.  He is coming back to us.  Slowly and tentatively.  He still has schizophrenia.  It's not a "cure" we witness, but it most definitely  "healing."  There are limitations and a continued need for support, but there is connection, love, and a ripe potential.

I don't believe that it is a coincidence that he comes back to us during the springtime-- during Lent.  It is a time of preparation and reflection, of turning away from that which separates us from God, in order to fully experience the joy of the resurrection of Christ.  It's moving away from brokenness towards wholeness.


As I write and reflect on the latest in this journey with JSB, I am carried back many years to a time when he was about five-years-old.  He had already struggled with the beginning pangs of illness and the church knew and understood.  The Easter service began in the blackness of Good Friday - in darkness and bleakness.  


And then, as we sang Christ the Lord Is Risen Today, several members of the congregation processed bearing Easter lilies.  Like the tender shoots of spring, they burst through the darkness bearing beauty.  Bearing joy.

JSB was one of them, little kindergartner just beginning a very, very difficult life path, beaming and carrying his Easter Lily to decorate the altar.  To transform it from death to birth.  To resurrection and new life.


Thanks, God, for reminding me of that today.  And, please, continue to cover JSB with your blessing and protection.

He grew up before him like a tender shoot,
       and like a root out of dry ground.
       He had no beauty or majesty to attract us to him,
       nothing in his appearance that we should desire him.
 3 He was despised and rejected by men,
       a man of sorrows, and familiar with suffering.
       Like one from whom men hide their faces
       he was despised, and we esteemed him not.
 4 Surely he took up our infirmities
       and carried our sorrows,
       yet we considered him stricken by God,
       smitten by him, and afflicted.
 5 But he was pierced for our transgressions,
       he was crushed for our iniquities;
       the punishment that brought us peace was upon him,
       and by his wounds we are healed.
 6 We all, like sheep, have gone astray,
       each of us has turned to his own way;
       and the LORD has laid on him
       the iniquity of us all. 
 
Isaiah 53:2-6
 
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