I debated - does this FP really belong here?  Perhaps it's more appropriate for "Grieving Room."   I also worried that it might sound a tad - well - unhinged.  Kind of like Scott Fitzgerald's "Crack-up" series (minus the talent).  But it's mine, and it's a fucking problem indeed and so, with caution flying, here it is.

WYFP (What's Your Fucking Problem) is our community's Saturday evening gathering to talk about our problems, empathize with one another, and share advice, pootie pictures, favorite adult beverages, and anything else we think might help. Everyone, and all sorts of troubles, are welcome. May we find peace and healing here. Won't you please share the joy of WYFP by recommending?

I am not a "people person."  I'm not really sure what that phrase means, but whatever attributes you'd imagine such a creature would possess, they're not virtues of mine.

As a child, I didn't particularly like other children. As an adult, I was drawn to issues, not individuals.  My friend Anne, who's known me since I was ten, speculated bemusedly about why she "made the cut."

"You don't like anyone!  This is disturbing - should I be troubled that you like me so much?"

My husband and grown children have observed and accepted my preference for solitude, confirming my mother's views: she used to introduce me as "My daughter, 'Kibbutz'.  She's anti-social."   It was hard to deny.  Being with the other humans was difficult for me, small talk was not exactly my forte, and I saved my most passionate feelings for ideas.

So I was not the only one stunned by my intense, consuming, and complete love for and devotion to Will .   It was easiest, I guess, to interpret what must have seemed like inexplicable actions - rearranging my entire life, reducing my work schedule, abandoning groups and causes I'd been previously immersed in - as some sort of "project", a do-good morality play that I'd suddenly committed myself to writing, producing, and starring in.    I had a modest reputation for do-gooder-ism anyway, and there was Will, in need of help.  That must be it.

It wasn't.  It was impossible for me to listen to  accolades tossed my way and not correct them; to fail to do so would be a betrayal of the most uncomplicated and intense human relationship I'd ever experienced.  To smile humbly while gathering praise for loving Will was unthinkable;  loving him was as selfish and simple an action as I'd ever  undertaken.  It required no output of energy and effort, it was a succumbing to a force as inevitable as entropy. It was effortless.  The rubrics of dealing with Will's challenges; that could be difficult.  But being with him?  Upending my life to accommodate his?  That required nothing from me, and I couldn't pretend otherwise.  

"So- why exactly are you doing this?" co-workers and friends would inquire, at various times and with different phrasings.

"I love him."  

If they were looking for something more enlightening, I was at a loss to provide it.  Analyzing why I loved him so much - well, that was going to have to wait.  Loving Will was a ride on the most exhilarating and terrifying rapids; a rappelling down a glacier.  How could I stop and try to dissect things?

Will fascinated me, he inspired me, he intrigued me, he amazed me.  He never bored me, he often frustrated me, he always left me wanting more.  More time with him, more answers, more stories, more - everything.  It was impossible to expend myself on him because the recharging always exceeded the output.  Even when the output included 24 hour a day care,  I still wanted more time with him.  Talking to Will - and sometimes that meant listening very carefully, reading between lines written so obliquely and faintly that you were not always sure they were there at all - you got the impression he'd gotten a preview, some sort of glimpse, of the master plan.  

I had  many questions, but bluntly phrased interrogatives rarely yielded forthright responses.  Will was a cat who walked by himself, and to entice him to share a hearth - and his soul -  meant you had to accept him on his terms, in his time, and with his ways.  It meant you might get six - or twenty - different versions of an explanation for one of his impassioned actions or bromides.  If you were careful and heard his words as a symphony instead of a one-finger piano composition, you might hear truths you never expected to understand.
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He was diagnosed as developmentally disabled.  That was inaccurate, and harmful.   He'd  likely had a prenatal stroke, and it left him with some speech difficulties  and learning problems, as well as behavioral issues resulting from his struggles to communicate.  His parents were wealthy people.  One would assume this would have helped Will get the best care.  That assumption would be wrong. They were persuaded to send him to a boarding school in Texas for behaviorally and emotionally disturbed children - at age five.  He stayed until he was thirteen.  He was abused there, isolated, angry, and terrified.Brown Schools

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 Upon his return home, he was enrolled in a private school for "retarded" children - further isolated, further segregated.  He was eventually placed in a public high school in Tucson, but "mainstreaming" was not practiced in any meaningful  way in his  Arizona school in the 80s, and Will's school odyssey was a nightmare of rejection, labeling and being reminded daily of not being good enough, not "normal", certainly never acceptable.

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What he longed for most was to live "on the outside", to be independent.  "On the outside" - he used the language of prisoners to describe his goals.   As a non-driver, he recognized that public transportation would be an important tool to achieve that and left Tucson for Chicago, where there were more transportation options.   His father, fearful of his ability to live on his own, steered him into a private organization that promised they would help "persons with disabilities" achieve higher levels of independence.  Along with the state funds that came with such a placement, the "Organization" received hundreds of thousands of dollars from Will's family.  The Organization embarked on  a 20 year program of neglect (benign and active) and abuse (emotional and psychological).  

Will fought back.  And he won important victories, establishing himself in his own condo, his own job, and using public transportation to enable him to cut ties to the Organization.  Anxious to keep the stream of income flowing, they fought hard to keep him peripherally tied to them, but thanks to some very good people in the state government in Illinois, he was able to finally free himself of them altogether. (we are still trying to bring even a measure of justice to those who exploited and abused him)  It was a profound victory; one the Organization had fought viciously. Their last attack came when he was already weakened from immuno and chemotherapy.  He prevailed.  "I won," he said, amazed.  "I won....."  
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In fall of 2008, he was diagnosed with melanoma.  For those of you who aren't familiar with this disease, it's not "just skin cancer".  Once it spreads, it's aggressive, brutal, and usually deadly.  We were plunged into the murky and byzantine world of drug-company run clinical trials, sometimes based on erratic and dubious science and exclusionary criteria, always motivated by profit, "Mud/Fuds" (MD/Ph.Ds) who viewed patients as lab rats,  and the terrifying roller coaster of emotions and ailments that accompanies advanced cancer.  He fought this disease with the same astounding courage he possessed in his fight for autonomy.  He underwent some of the most toxic treatments known in an attempt to defeat this disease, and though he beat the survival statistics, he died on October 6 of this year,  finally unable to endure the onslaught of both melanoma and chemotherapy drugs.

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I was alone with him when he died.   For two hours afterwards, I sat with him,  holding his hand and stroking his hair, while the hospital bureaucrats made calls and filled out paperwork in the hallway.  When they finally took him from the room, I quietly packed all his belongings.  We'd fully expected him to come home; he'd moved in with me by then.  I went home alone.    And in a very real and terrifying way, I've been alone ever since.  I never put much stock in the concept of a "soul mate" before.  I've lost many loved ones.  But though I've grieved many times ( I lost a beloved sister to homicide, among other losses) I never felt grief like this.  The word "grief" seems wholly inadequate.  I've been abandoned on an alien planet, a refugee from a "Twilight Zone" episode, left to fend for myself, and quite certain that I'm the last of my kind. I'm torn in half, left bleeding and paralyzed, but by some horrendous metaphysical error, did not die.  

Of course, I know it's not acceptable to let other people know this.  (I write this piece with real trepidation).     It's wallowing, self-centered, unreasonable.  It scares the horses.  It's depressing, it's ungrateful, it's ignoring how much good there still is in my life.   I'm supposed to do "grief work", move through "stages", and let time heal.  (Time, I've found, tends to be neutral.  It sometimes heals.  It sometimes does not.  It just progresses, regardless.)  

I'm pretty sure I've heard every well meaning piece of advice conceivable.  I've told myself a lot of it.  But here's the truth:  some wounds do not heal.  I'm still here - there is a reason for it; I don't intend to dishonor the gift that is life by squandering it.  I harbor no illusions that this grief of mine is "worse" than that suffered by others throughout the years.  It's just that until this happened, I never truly  knew that sometimes, things don't get better. I thought I knew grief.  A murdered sister, dozens of lost friends and loved ones later, I should have been intimate with it.  Either I never was, or this time it's  quantifiably different.  So, what do you do?  This, I guess: You  learn to live with a pain in your heart and soul that will forever leave you  bereft in the most visceral way.  I'm not the person I was before;  I'm wounded in a transformational way.    That's a truth that doesn't get told too often.  It doesn't fit the narrative we prefer; it's not a happy ending.   No inspiration to be found here, I fear.  A kind of strange beauty, perhaps - the kind you stumble across in the bleakest of poetry.  Exhausting.  Terrifying, much of the time.  

But it's a truth, nonetheless, and it is, fellow Kossacks, My Fucking Problem.  

William Thanet French, z'chrono l'bracha .  May your memory be for a blessing.  Your life certainly was.

Melanoma patients information page<a</p>

They tell you your rights - but they won't let you use them

Originally posted to KibbutzAmiad on Sat Jan 08, 2011 at 05:55 PM PST.

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