WHEN MY ILLNESS WASN’T MY LIFE

My illness once was my life, when I was the bipolar poster boy

When I needed, I needed to know, needed help, needed support, community
My illness was all bewildering—new to a shattered world, my world
When the fulness of my life sunk into my illness
My identity reposed in the drop-in center
When the eyes of all consumers waited upon me
My category slotted me High Functioning: the drop-in center super consumer
When my illness was my life and I befriended NAMI’s salve
My life and acquired competences sent me all across the US
When my story lectured at local, state, national, and international conferences
My recovery article published me in university journal and recovery workbook
When my illness was my life and I was a textbook label, the bipolar poster boy

My illness echoes in my every life outside the doors of the drop-in center
My recovery calls me to thriving stories outside psychiatric textbooks
My illness recurs but ritual chant in archaic language of quaque hora somni pills
My recovery fashions me in the image and likeness of a wholeness I always was
My illness wrapped me in clouds, warped self-image flashing fragments past self
My recovery closes the textbook identifiers written upon a terrible chapter
My illness fades in the clarity now illuminating the mind it once dominated
My recovery lives as a poem, a song, a choir of friends, a cathedral of love
My illness shadows my awareness as a backward glance into the dark
My recovery belies the stigmata that would mark me as unholy, unwhole, ill
My recovery nearly makes me an unbeliever, that there ever was a time

My illness was my life, when I was the bipolar poster boy

A VISION OF BLOOD DARKNESS

Has your consciousness ever been in blood darkness?
Where the black all around your soul is palpable, though you can’t touch it
And you can’t seem to see through the blood darkness
And two funny guys next to you at the bar—
One sitting next to you and the other—his pal—standing
Give you the time of day, almost care
But not enough to touch you through the black cloud
Encompassing all of you except a fragment of mind
Just poking through into the light, to the two funny guys
They make a joke about Ordinary World by Duran Duran, popular those days
It’s playing on the bar sound system, and I listen to Ordinary World
Twenty years later and I think of those two guys
And how they were almost comfort

I needed comfort badly, all alone with my psychosis
Which my psychiatrist’s professional distance
Didn’t afford, all alone in psychosis and no insight
Little mind available to understand if there had been an explanation
Neuro-transmitters, serotonin, norepinephrine, bipolar with psychotic features
And, maybe, someone to tell me I’m still a person
Understanding’s comfort, any comfort, like the young couple
Who worked at Subway and befriended me—which meant
More than hanging out together, us guys—total acceptance we both craved
And I didn’t wonder about what had become of my ambitions
Like my old friend over the phone thousands of miles away
Made me feel like I wasn’t all alone while he was on the line
In blood darkness, though I was still

Psychosis and its consequential changes in my life
Derailed ambitions, transforms identity, remaking self, patched-up fragments
Changing the way I attack the world’s scarce opportunities
I wouldn’t say I attack, now, as then,–before
And changed direction into the path I followed to here
Becomes life as I know it, self as I know it
Trajectories of identity and it’s not a matter of
Adjusting to circumstances—I, in fact, am the very circumstance
Blood blackness and emergence into such sanity as I possess,
Such stability as content the psychiatrists, which is measured and categorized
Into functioning and I am categorized as High Functioning
Even though to me, 40 hours is a stretch, not like before,
And people wag their heads at me and think me lazy
Blind to the blood darkness following me like a malevolent shadow
And I can’t make them see the light, not even in a dissertation, textbook, poem

DIATONIC DISORDER

It was such a kick, I couldn’t contain myself
“I’m going to quit school and go back into music!”
My girlfriend thought I was serious and it scared her
We had rendezvoused at The Backyard Bar in Newton Center
Subsequent to my performance on guitar at a Harvard variety night
I stayed in school and gigged through it in a couple bands
Playing way into the night at home, too, alone in my basement, most nights
My drive collapsed; my confidence broke subsequent to
My first bipolar disorder episode
“I’ve got you covered,” my partner assured my broken nerves
Subsequent to him asking me to sit in, and I got through Johnny B. Goode
We played in a band before my confidence was
Crushed, bravado broken
Before my psychotic episode eroded
The self we both knew
Bold, brash, commanding
Years subsequent, we talked, over a few days, about good times on my visit
Performed a couple simple songs we used to play at an open mike
He noticed me shaking, heard me fumble a few notes
Didn’t want to hear my narrative
The tragic episode bipolar wrote for me
Doesn’t want to hear about me weak,
Subsequent to the visit I was on jazz keyboard back home at an open mike
“How did it feel to be back onstage?” Brett asked
“Terrible!” I exploded and surprised Brett
“It was clean!” Brett protested to my collapse
But also said that he noticed me shake, subsequent to my asking him about it

Almost convulsing onstage at the keyboard
Did the audience notice?
As I started the song, I desperately wanted to stop
Run
Interruptus
But the song had to go on
The song I was in the middle of
The song I shook all the way through
All the interminable way through
Shaking
Agony

“I wanted you to solo some more,” my teacher said,
Subsequent to my performance
He didn’t know, didn’t notice.
I don’t play way into the night, anymore, alone, at home
Don’t feel like it
Don’t perform—can’t perform, looks like
Subsequent to diatonic disorder

WHEN MY ILLNESS WAS MY LIFE

I was the bipolar poster boy
When my illness was my life:
Super Consumer
Drop-In Center
Support Group
NAMI Organization
Seminar presentations
Academic publications
Consumer community
High functioning.
The eyes of all consumers waited upon me
—We understand one another—
I was my psychiatrist’s favorite
When my illness was my life
And the textbooks labeled me mentally ill, label me
A chapter now closed on the fulness of my life
I can hardly recollect in my life now
Realize that the textbooks still label me mentally ill
My life then, when my illness was my life

My 12-Step community was my life
About which I must keep anonymity
At the level of press, radio, film, and poetry
My only friends
My social life
My whole life
Salvific meetings
Salve
Salvation
Save
And healing persists in the 12-Steps
And I live the principles in all my affairs
But all my affairs are not only in and of
The meeting rooms I attend
All my affairs are not only the 12-Step community

Life does not launch me into recovery
Not as failed life once did
Recovery launches me into life
I must live with, but not by, my illnesses
My illnesses walk with me, will ever walk with me
While I walk this mortal coil
I embrace the whole world that walks among life outside meeting rooms
Life that finds fulfilment among hypergoods that thrive outside meeting rooms
Outside the Consumer Drop-In Center
Recovery, sanity, serenity, meetings, pills
Launch
Launch me
Launch me into fulness of life
This, my life of
Music
Verse
Friends
Amusements
Work
Study
Love
Spirituality
Fulness of life
Life outside the drop-in center, meeting rooms
The illnesses that no longer make me who I am
No longer make life what life is
The chapter closed
Poem concluded
I compose new stories in the fulness of life I live
Write new poetry

THE WASTE THAT DESCENDS UPON ME

I can’t practice with Depakote in me

Playing over the same wrong notes I know better

Before my nightly dose, and it’s all a waste after the pills

It’s only been 6 months since my last med adjustment

It was all a waste for 27 years before my p-doc took me off olanzapine

And I couldn’t play my embarrassed way through a single song

Finish a Tai Ch’i form and someone in the studio noticed

Me wearing a Harvard sweatshirt and asked me

About it and why I couldn’t get it

Now the fog clears in the morning like sleeping off a drunk

And I get back to the piano and the new charts I’m learning

For the new band I’m forming I think I can play in as if my old chops

Were still there, when I could play Bach’s Toccata in D-Minor

And now I’m stumbling through Little Wing after my 10PM meds

The Depakote I can’t play under the influence of or operate heavy machinery

And it’s only rote scales which I need anyway

After my nightly dose, the waste that descends upon me and my practice sessions

I can’t play under the influence of Depakote

Only write

EXPECTATIONS

A whole community of us; a whole culture

A drop-in center, network, support groups, community clinic

Psychiatric symptoms so severe; we understand one another

We all knew each other when I was there

Yet, since we aren’t raving, regular people who see us expect

We function as if our symptoms are not severe

Who don’t understand us as we do one another

Grudge against government hand-outs

Which I barely function well enough

To be denied

Barely function

Function well enough

Just well enough

To be shamed by my co-workers’ expectations

That I function better

As if I didn’t have an illness

Not understand

That it is my best and I do have an illness

And so the whole community of us who understand

One another, our culture, our community, our symptoms

“You have an illness;” she said, “You shouldn’t be working.”

POINTLESS QUESTIONS

Whom do I get mad at?

Ordinarily, somebody would pay

What it did to me

What I went through:

–Uncontrollable tears

–Whole week-ends spent in bed sleeping

–Trying to work through sedating meds

–Fighting to live, pay the bills

Someone ought to pay

And I look back

To how I was

What I go through, now

Someone ought to pay

 

Bitter, the capacity to remember

 

And I ask why did it happen to me?

Why

Why did I have to choose between the psych-ward

And a life side-effected into dragging

A sluggish body and thick mind all over

Bad work-days that barely eke out

My existence

 

God only knows

 

Then, I ask again

What did I lose in it all?

Was it but imagination’s fabrication of an idealism

Of what it is to live, what life is?

Whose life hasn’t been collapsed around?

Incredulous wondering what happened to me

That it would happen to me

That it would happen

What I went through, go through, now

 

For me, it was bipolar disorder, for others

It could be anything, I guess

And demur a list of any number of crushing things that ruin

I conclude my words with a blank to be fulfilled in

 

Then there’s the question of God

NEURO-TRANSMITTERS, THEY THINK

Electric brain synapses neuro-transmitters

Opted me out of ordinary life, consensual truth, opts me out

Sleeping through the whole week-end

Paralysis of will, the psychiatrists call it

Soporific medicines sleepy pills slow my mind

Can’t remember the first Chen Tai-Chi form after five years

My disability doesn’t count

When employers, publishers, governments seek demographic statistics:

Gender, race, orientation, not my disability

But I’m opted out of social norms, structures

By motivation, mood, mentation, medication

CONFESSION:

Try though I do, my career interruptus

Staggering through the world as best I can

As best I have to because despite my disability

No one takes care of you

IT NEVER USED TO BE

Mike noticed me shaking

Playing at an open stage

The way we had in clubs years ago

The legacy of my psychotic episode years ago,

The effects persisting in my involuntary shakes, fear, and incompetence

Brett noticed me shaking

Almost convulsing onstage at the keyboard

It never used to be like that

The ease, the drive I had to perform

Then the caving fear onstage

The lingering apathy that stole

My passion to play hour upon hour at home

Getting better hour upon hour enthralled

Or onstage before crowds

Eager, excited, up

Darryl tried to jam with me last spring

Remembering my former ability

Thinking me as capable as it used to be

It was sad, the attempt, his generosity

One player quenched by bipolar disorder

Likely doesn’t mean much

But it does to me

SILENT LOSS

I suffer

Silently

Proficiency stolen

Asleep for years

Bipolar Disorder

My friends don’t want to hear

Why I am this way

 

I am waking up

Only to see what I’ve lost

I try to explain

To deaf ears

Try to pick up the pieces

So I suffer

Silently

Remembering

My tragic loss

Only to me

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