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An Open Letter…

This is an open letter to my beloved sisters.  Love you both dearly..

Dear Hannah and Samantha,

Life is cruel and unfair, is it not?  You know this far better than many people I know.  And I know it is because of me that you know.  You went from playing with Animal and swimming in pools to spending nights alone while our parents visited me in hospitals and cared for me with the passion and intensity necessary, yet damaging to your little lives.  Bones grew and lengthened in a world foreign and ill equipped to offer the necessary calcium and minerals for healthy growth.  My illness has not only taken so much from me, but it has taken part of your world, your childhood, from you.  Unfortunately it continues to do so, and my heart breaks with every breath I stifle and every moment I sequester from the feeble existence I have created for you.  No words I write or utter can return a childhood, a happiness to you, but I shall try.  If at most you read them, my heart will be sufficed.

Hannah, thank you for the eight months you put your life on hold for my care.  For twice a week you made the approximately 55-60 mile trek to Kaiser Sunnyside to take me for electroconvulsive therapy treatments.  We left often before six o’clock A.M. in darkness and fog, and while I often slept for the duration of the car ride, you were forced to remain alert and diligent.  You would then wait in the car in the parking lot for over five or six hours as I received treatment, and then you would drive over an hour to take me home.  This was your life.  My life was your life, and it still is.  You drive me to all doctors’ appointments and pick me from the train station at every beck and call.  You are even relegated to take me to get haircuts.  Our lives have become so enmeshed, and in this enmeshment you have lost your identity while retaining mine.  I must work to cut the tethers, allow you to live once again.  I promise you that I will try to do this, as it is pinnacle for your survival.  I pray, please find your way.  Go to school, work, anything of the sort, but be happy.  I want nothing more than to see you happy.

Samantha, you would not remember this, but when you were still very young – maybe seven years old – you hugged me when I was in a moment of anxiety and rage.  We now do not talk very often, and my illness distances us.  You suffer, too, ravaged by depression and anxiety.  I wish there were something that could bring us together, to hug one another in times of down and times of anxiety.  I am so proud of you for moving on with your life – attending college, living on your own, going on dates – and if the best that our relationship can sustain to be is distance at this point, I, as I do for Hannah, want you to be happy.  Hopefully someday we can mend our wounds, close the distance and reconcile, but your happiness is what I treasure in my heart.  I send my love and apologies for the hell you had to live through, and I know not yet whether these wishes have permeated the barrier of your heart, but I will continue to try.  I will not give up.  For neither you or Hannah.

You have always lived in my shadow – my good grades, excellence in music and other extracurriculars.  Teachers would often refer to you as “Alex’s sister.”  How painful it must be to have an identity defined by someone else’s shadow, not to be one’s own person.  While I did not choose this position, I certainly filled it.  Please know that you are so special and unique, probably far more so than I.  I beg of you, laugh, smile, and move on in your lives.  Claim what is due to you, what you deserve.  I will sit here quietly and wait for our connections to tie once again, but most of all, I would like to say I love you.

Love,

Alex

Partial

Approximately four months ago, my psychiatrist placed my Bipolar 1 Disorder in partial remission.  Since, I have struggled, grappled, with the word “partial.”  How is it possible that I am only partially towards remission?  Where is the line drawn in the division of these categories, where does the curtain fall – symptomatic, partially symptomatic, fully asymptomatic?  The application of “partial” poses discomfort for me on several levels, the very first being my perceived lack of control.  As the entity experiencing the disorder, how can an outsider peer in and see the inner clock working, ticking, turning of my mind and know, with a certainty, I have progressed up the ladder?  I feel quite wary of such a distinction.  I see mental illnesses as fluid disorders, not remaining in exact, crystallized forms for extended periods of time.  Thus, as I continue to have episodes of mania and depression, I squirm with angst and frustration that such emotions should have been annihilated by now, as I am in partial remission, correct?  I am constantly flowing in and out of states, and these two words attempt to hit a fragment of my existence like a dart to a bullseye and obliterate all outlying symptoms.  At least this is how my mind perceives it to be.  Rather, as I have discovered in the medical world, labels are just an issue of semantics, present only for clear and consistent communication among medical professionals and for the direction of effective treatment.

If I can entertain the notion of casting all labels aside and truly examine my progress, there rests marked improvement.  One year ago, I was still receiving electroconvulsive therapy treatments, and much of my episodes surrounded suicidal thoughts and intrusive thoughts of self-harm.  Episodes lasted weeks, even months, despite aggressive treatment.  If asked what my greatest worry for the future was, I most likely would have answered suicide.

I had my final official meeting with my psychiatric nurse case manager yesterday.  We were discussing my progress and impending ability, due to vast improvements, to be discharged from the intensive care program.  She posed the question, what are you most worried about in the coming year?  My immediate, knee jerk response was “not getting into grad school programs.”  What a departure from a year ago, twelve months ago, three-hundred sixty-five days ago.  It was in this moment that I could see how significantly my perspectives have changed, have shifted.  Instead of contemplating the unsure existence of life in the near future, I imagine a place in which I live, I am successful, and I humanly exist.

To battle words is a futile battle.  One must recognize that words only hold the power that you allow or wish for them to hold.  And why can words not be fluid as well?  In consideration, can the word partial possibly be considered fluid and dynamic, for does it not imply a sort of limbo?  How more advantageous it would be to see it as a realm of existence where I can experience a spectrum of differing symptoms, yet still exist in a space of reduced symptomatic expression.  I do not have to imagine lines and curtains, theatrical representations of the process of remission.  The underlying, driving emotion in this wrestling match is fear, in two parts.  As I progress into partial remission, does there lie an impending regression into severe illness once again?  Or alternately, as I move from partial remission to a possible full remission in the future, will I lose the mind I have and hold so dearly, or my depth of experience, as well?

I can take a shower and perform morning ablutions without washing my hands repeatedly to avoid contamination.  When things do not occur within increments of four, I no longer freak out.  It only takes me a few minutes to leave my apartment, checking all faucets and appliances and the door only a few times.  These rituals, but a small part of my cornucopia of symptoms, were all-consuming.  The other day I realized I did not massage my scalp to the count of four as I was shampooing, and that was okay.  Anxiety had abated, and I could wash my hair without the abacus clicking within my head.  Instead of focusing on semantics, I vow to focus on my improvements, my victories in the face of crises.  Why get hung up on words when I can drink the sweet wine of life?

Drifting

She gently placed three electrodes on my chest.  Sinus rhythm, minimal tachy she assures me as I lay in anticipation of drugs that will float me in tingles to worlds I know not.

What is that symbol on your necklace, she asks?

“It is the symbol of the Baha’i Faith…”

 

This piece is in response to a WordPress prompt to tell a story spawning from a source of inspiration, found in any form and told in any fashion.

Weekly Writing Challenge: Fifty-Word Inspiration

Hope in the Form of Light

The sun rises, in a foreboding nature, its early glancing rays the instillers of trepidation

Trepidation channeled in the quick exchanges, the goodbyes, the prayers

Offered quietly before waltzing with the asphalt in the bleak but simultaneously effulgent display

The car is hungry, growling for a morning meal

We stop at the pump, satiate its hunger and move on our way

My sister sips from a plastic bottle while I desperately attempt to dampen my dehydrated mouth

No food, no water. The river runs dry and fruitless

The sun continues to rise as I continue to plummet in anticipation

I arrive at the hospital, uncover myself from the comfort of my quilt

Grasp the stuffed dog I have named Puppy, who has accompanied me thirty-seven times

And I trudge my way through the sliding doors, check in with my ID and card

Proceed to the Surgical Prep Area

Puppy and I are soon whisked to the inner layer, the mysterious fortress where many enter and

Not all have the privilege to leave

Bay nineteen, oh my favorite number, I revel silently as I quickly don a hospital gown and paper booties

Feeling down, depressed, or hopeless – nearly every day

Having thoughts of hurting yourself or of suicide – nearly every day

So goes the depression screening

Pinch as a needle creeps into my vein, a flash of blood, success

Is my memory going? Well there is a determining exam

Today’s result? Negative, the woods are clear for now

Sticker time, EKG, EEG, so many machines, so many stickers

A burst of electricity passes through the conductor paste they have so carefully placed

On each side of my head

One, two, three seconds… Nearly a minute passes of hopeful seizing

Wondering if anything will ever work, if anything will ever bring peace.

 

This piece is in response to the WordPress Weekly Writing Challenge: Flash Fiction.  The challenge was to write a brief story – 300 words or less.  I chose to present mine in a semi-poetical nature.  Hopefully I was successful.

 

To Be Free

I often times feel trapped in the world of my illness.  My life is a series of medical appointments – psychotherapy, psychiatric, life skills groups, DBT groups, ECT treatments – which are all consuming, centering solely on the treatment of my illness.  Not only am I trapped in the physical world, but I am imprisoned within the confines of my mind.  My mind is my torturer, offering unrelenting disruption and disturbance.  Thoughts drown out the world around me, and in a sense create an impenetrable bubble and barrier between myself and the world.  I am secured – ball and chains – to this world with bonds that cannot be severed.  My illness has kept me from participating in many aspects of life that are essentially commonplace phenomena, such as advancement and completion of school and studies, participation in social circles, and the partaking of events and happenings that is taken for granted by many.  

I pray to God to be free, to know what it is like to be able to just live, to have the opportunity to participate in the fruits of life without having to question my ability, dependent upon my mental state, to engage in events.  I feel as though I have lost so much, with numerous hospitalizations, outpatient programs, years and years of psychotherapy and medication management, and now thirty-four ECT treatments.  My autonomy has been handed over to hospitals and doctors.  I receive glimmers of hope – progress with therapy and medications, improvements during hospitalizations and in ECT treatments – but yet this is not living.  I think we often take for granted our ability to be, to live and participate in a life that has happiness and meaning, to be able graduate from educational institutions or to go throughout our days without having to check our phones to see what scheduled medication we are long overdue to take.  I am seeing marked improvements with my medication therapy and numerous ECT treatments, but I thirst for more.  I hunger for more.  

Nina Simone’s song, “I Wish I Knew How It Would Feel To Be Free,” touches me deeply and expresses so well how I feel in my search for freedom.

 

I Wish I Knew How It Would Feel To Be Free

 

I wish I knew how

It would feel to be free

I wish I could break

All the chains holding me

I wish I could say

All the things that I should say

Say ’em loud say ’em clear

For the whole round world to hear

I wish I could share

All the love that’s in my heart

Remove all the bars

That keep us apart

I wish you could know

What it means to be me

Then you’d see and agree

That every man should be free

 

I wish I could give

All I’m longing to give

I wish I could live

Like I’m longing to live

I wish I could do

All the things that I can do

And though I’m way overdue

I’d be starting anew

 

I refuse to give up this fight, to acquiesce my power to that of my illness, but oh,  how wonderful freedom would be.  Perhaps my struggle is what makes me unique, what makes me special.  A defining characteristic of who I am.  I must find my own freedom within this seemingly impenetrable world that is my illness and slowly chisel cracks in walls that are already beginning to crumble.  Will freedom ever come in the sense I wish for it to?  Most likely not, as I do not believe that is feasible.  However that does not mean I cannot be free.  I will find freedom in the quality of the life I create for myself, in the life-saving treatments, with the friends I surround myself with.  Freedom is not as elusive as I believe it to be.  It is there, requiring nothing more than an ardent search.

 

Another Stint

Unfortunately circumstances necessitated that I make a slight disappearance this past week.  I had been anticipating this trip in seriousness for several weeks, mentally preparing myself each day should the occasion arise.  My last psychiatric hospitalization was in August of 2013, and I set myself on a personal endeavor to avoid future hospitalizations at all costs.  I have successfully done so up until now.  I built such an aversion within my mind to the possibility of requiring a higher level of care in order to ensure safety and promote emotional stability.  Over the past few weeks, I began to chip away at this aversion and allow the notion of the need to seek inpatient care creep into my mind, acknowledging the benefit and worth I could derive from such a stay.  My moods have been vacillating between significant mania and significant depression, consisting greatly of mixed episodes (episodes in which one experiences mania and depression simultaneously or within short periods of time.  These episodes are especially difficult to treat).  Intellectually I saw myself approaching hospitalization, but emotionally I adamantly resisted it.  However this past Monday, the barrier was broken.

As per my mother’s suggestion, I have had a bag packed for several weeks containing essential clothing and toiletry items, my journals, and The Hunger Games: Catching Fire, also an essential item.  I brought these items with me to each of my electroconvulsive therapy treatments at the hospital these past few weeks, should they decide to admit me.  Well, this past Monday a collective decision was made between the doctor, my mother, and myself.  I could no longer contract for safety and my moods were debilitating and all-consuming.  The greatest determinant for my admission, for me, was that I was tired.  Tired of battling these ups and downs constantly, of battling the constant slew of appointments and the exhaustion that arises from receiving electroconvulsive therapy treatments, and from just battling life.  I needed a rest and a safe place to be.

Following my electroconvulsive therapy treatment, the psychiatric unit sent a nurse and a wheel chair to transport me to the unit.  I was pretty drugged up at that point from general anesthesia, a paralytic, and major sedatives, but I was determined to make sure Puppy made the trip from the surgical prep area to the unit closely in my care.  Puppy is a stuffed dog that has been with me to each of my thirty-two electroconvulsive therapy treatments.  After arriving and completing my intake, life resumed to as I recalled it to be from past stays.  Treatment at this center has far surpassed in quality the treatment I have received at the three others hospitals at which I have stayed.  The program is DBT – Dialectical Behavior Therapy – based, focusing on distress tolerance skills, mindfulness, and how to manage our emotions and symptoms effectively and to the best of our abilities.  The days consisted of class after class, all varying in content.  The basis for many classes were DBT topics, but there were also meditation classes, outdoor activities, and cooking classes.  I learned how to make fruit nachos, so if you are ever curious for the recipe, please send me a message!  One of the greatest highlights of the program was the camaraderie I developed with my fellow patients and the experiences we shared together, especially rousing games of Apples to Apples and Pictionary.  My greatest regret was the unavailability of the vegan lentil soup each day I spent there.

Most puzzlingly, during my stay, I experienced what appeared to be a miraculous recovery.  I was bubbly, chatty and talkative – albeit probably too much, a possible harbinger of moods to come – and quite amicable.  I believe the electroconvulsive therapy provided an emotional respite and residence in the unit provided a much-needed rest and an environment in which I could be safe and unable to act on self-destructive urges I may have.  Since being home, many of my symptoms have returned, possibly in less intensity, but I feel rested and better equipped to tackle and address them head-on.  While no medications were changed, I received a reinvigoration and condensed refresher on my DBT distress tolerance skills.  

I needed this rest.  Yes, self-destructive urges have reared their ugly heads once again and I am cycling pretty quickly, but my body and mind are rededicated to my seemingly endless fight.  I know I can never rid myself of this illness, but I can ardently commit to the fight – both for the sake of myself and for the sake of those around me whom I love.  I have been closely monitoring numbers – numbers of medications I have been on, for how long, and their doses, or the number of hospitalizations I have had, which now has reached eleven.  However I believe this may be both productive and counterproductive.  I know I must acknowledge the worth in closely following my progress, but I also must ground myself in the here and now and do what I can to win this battle.  I will not concede to my disorder.  It must face my ironclad box of skills I have developed, and I know, with a certainty, it will not win.