VI

Six years ago today, I had two brain surgeries.
Six years of surviving ever since.

Surviving is beyond hard. 
It can be loud and chaotic, 
a deafening swirl sucking you in 
like Dorothy traveling via tornado.
It can be silent and crippling
a choke drowning sensation 
like a scream muffled with violent intent.

Ironically, surviving often prevents
any real chance to move forward,
because you find yourself
so tangled and trapped in the past.

You find you relive it,
over and over,
being crushed by the weight of the memory,
second guessing the choices
you had to make merely to survive.
Doubting yourself from deep within.

Surviving is forever ongoing
and is rarely pretty.
It has an honest weight 
which you alone have to carry,
and the task of dragging a mountain that large
takes its toll,
inch by inch and day by day.
One labored breath at a time.

Six years has been harder to survive,
then the brain surgeries themselves were.

Some days the silence wins.
Some days the loud overwhelms.
Some days you softly remember who you were,
and clumsily find who you are now.

Try to remind yourself
Bravery is not always made true 
in the grand gestures
but often lives quietly in
the smallest of inhales.

I am trying to remember that today,
one single breath at a time.

Five for Fighting

Five years ago today I had brain surgery to save my life.

It has been the worst five years of my entire life.

I have often been called brave, blessed and lucky.

But in all of my life before that day combined, I have never known such fear, pain, and horrible consequence as I have every single day of the last five years.

I have been told how loved, beautiful and valued I am.

But have never felt as lonely, ugly, or as worthless as I have through every single heartbeat of the last one thousand, eight hundred and twenty-five days.

I have heard overwhelming words of hope, support and promises.

But, I have felt the loss of every dream I dared to dream compounded by soul-shattering abandonment while being decimated by the suffocating weight and retribution of brutalizing poverty.

A decision I made five years ago, which I can't take back, which I can't erase the history of me it set in motion, and which, with ever-weakening resolve, I struggle to survive.

I cling to every whisper of hope offered or merely implied, even as I drown more each day beneath the waves of waiting for help which never comes. 

I endure every treatment recommended, even when they are more debilitating. 

I swallow every ounce of my dignity and my pride, even as the shame and humiliation choke me. 

I beg and borrow to move on to the next little pebble, even as the rock and the hard place crush me.

I push through relentless pain daily, even though the pushes cause additional unrelenting, toll-provoked agony. 

I get up every day, even when every fiber of my being literally begs me to stay down.

Every day... 
for five years.
Every day...
plus, tomorrow.

Breathe Brave.

Broken Hearted

Everyone's heart breaks sometimes, at some point, in some way. It is part of life for everyone.

Survivors of crisis, trauma and illness feel this more acutely than others but not because our hurt is more valid or hurts more than someone else's. 

Instead, it's more intensely damaging, because we are already too damaged. 

We are literally on our knees crawling, trying to pick up all the shattered and scattered pieces of ourselves. So, it's impossible not to be cut far worse by the sharp edges of a broken heart.  Brutally ripping into a preexisting wound.

Struggling to survive takes away the resiliency to bounce back intact, when trying to process new pain. Suffering makes any new wound instantly deeper and heavily salted.

A new bruise compounding on top of an old bruise, turning to dust already broken shards.

On top of this unbearable pain, we can feel guilt, shame, sadness, grief and loss, solely because we do not have the ability to be okay anymore.

We can not explain it to others, because it is not their reality. It can sound selfish or petty, because it is not their reality.

Most people's view is from a place where the breaking happens from an intact whole. A whole self that suffers from the breaking, but still has room to recover and heal. 

However, survivors are already fighting to hold on to the remaining pieces of the whole. When another break comes, we find ourselves without the room to recover or heal. The room is already packed full of broken pieces, the wounds are already torn open, and the heart is already failing to beat strong enough.

Already broken hearts can continue to break, but the tragic truth for survivors is that with each break it becomes harder to fit the pieces back together. Some pieces become so destroyed there is no way to make them ever fit again, and some hearts become so frail they haven't the strength to even try again to rebuild. 

Some broken hearts can not recover.

Sometimes there are not enough band-aids. Sometimes all we can hope for is to someday find enough pieces to attempt to build something else from scratch.

Always Something

Life has a way of hitting you with things. Small or large, these hits catch you off guard, throw you off balance, and tip the scales against you. It's a normal part of life. Eventually to be shaken off, rebounded over, recovered from, and your footing regained.

However, for people struggling through crisis, trauma, or illness, these normal sized hits can be very far from normal. When your life is already out of balance, and you're struggling to deal with everything off kilter, even the most minor of hits can be catastrophic.

Think of how in normal circumstances, a cold or flu can affect your work week, routine, or scheduled plans. 

Now imagine your health already being bad, existing daily with a pain level that's barely bearable, and physical or emotional fatigue that's truly a minute to minute battle. In those circumstances, a minor cold or injury can literally break your already fragile condition. Something so small compounding into something so large it feels, or can actually be, unrecoverable. 

Think of how an unforeseen expense can throw off your budget or change your plans.

Now imagine finances so stretched by medical bills or a literal inability to earn more during to your crisis. Living moment to moment, paycheck to paycheck where even the smallest unforeseen expense can leave you unable to pay for necessities like medicine, food, or electricity. Suddenly what would seem like a minor hit to most, sets you back and buries you so deep you can't even contemplate how to get out of the hole you find yourself in.

It is hard for most people to comprehend how truly debilitating and life-altering these unbalancing hits can be. Most people just know the stagger from a hit as a normal part of life. But, the people struggling for their survival know how hard and far these hits can you knock down.

When you're fighting for your life, your sanity, your health, your heart, and your peace of mind, just one more blow often has the ability to just kill the fight left in you.

And, when your struggle to survive is long term, you have no reserves left to deflect and bounce back from the blows. You are literally, figuratively, emotionally, and physically tapped out.

It is exhausting, stressful, frightening, and spiritually paralyzing. It also can actually be dangerous and life-threatening.

There is no painless, quick or easy way through it. 

We just have to try to breathe brave, cling desperately to what little hope in us is left, and try the best we can to absorb the weight of our additional bruises. Try to hang on, even when you feel your grip weakening. 

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The Relativity of Crazy

During extended recoveries from trauma, crisis and illness, survivors are often faced with the difficult, casual accusations of complaining, whining, exaggerating, and flat out lying about pain and symptoms. These accusations can affect the courses of treatments, altering them to only partially address the complaints while overlooking other aspects.

During the stress of this emotional and physical turmoil, it can be additionally debilitating to suppress the pain and contemplate the symptoms based on these accusations. Survivors can feel like they are going crazy, doubt their own feelings, and lose hope they will ever regain any semblance of their life before.

We look at the walls of the asylum pressing in and begin to believe we, not only belong there, but deserve it.

Today, during a routine appointment, while charting the need for an upcoming test, a doctor, new to me, took the time to really listen to the way I was describing my pain, look at the locations of my symptoms, and review my medical records including old x-rays. 

After five years of pain and numbness in my hand and neck, this new doctor, in less than five minutes, had an eureka moment making a new diagnosis which not only made sense, but included all of my symptoms. This not only explained why I had pain, but detailed where I had pain. It revealed why earlier treatments hadn't worked or had only been partially helpful, and set a course for how new treatments will help me.

Just by listening and connecting the dots, in a way no single doctor had done in the last five years, he gave a solid diagnosis which offered the chance for my future to go from one of life-long pain, potentially to a life without the same level of suffering.

He didn't have new information. He hadn't run new tests. He wasn't looking at current scans or x-rays. He merely listened to me and really looked at my medical history.

In the long run, I don't know if today will have been the turning point in my recovery. I only know I have a name for some of my pain today which I didn't have yesterday. I only know now that, on top of everything else, I have Thoracic Outlet Syndrome, due to being born with elongated transverse processes which were in turn effected by muscular scar tissue from whiplash and exasperated nerve damage from brain surgery. 

But, knowing has made a difference in my emotional well being. 

I am not going crazy. I have real pain. It is not made up or exaggerated. It is not me seeking attention. I am not whining. I am not a liar. It has a name and it has a course of treatment. 

As survivors, we are the only ones who truly know what we are feeling. We are the only ones who know our pain. We are the only ones living with it and enduring. 

We have to believe in ourselves and listen to our bodies, even when others don't. 

We have to keep trying to find the right help. We have to keep trying to make people listen and understand. We have to reach for new treatments, new medical professionals, new shoulders to lean on, and new hands to help us up when we are down.

We are not crazy. We are surviving.

Surviving Freedom, Hatred & Donald Trump

Freedom of speech is an amazing thing.

Survivors, who have to come to terms with their illnesses, crisis and traumas, struggle everyday to have a voice. A voice that rises above the pain, the sadness, the fear, the guilt, and the shame. A voice that speaks for their value and lights the way of their healing. A voice that some days may merely manage the barest of whispers, while struggling not to drown in the depth of their own screams.

Anyone who has ever had to fight to be heard knows that Freedom of Speech is not free. It comes at a great cost. Many have died for it, both figuratively and literally. But, it is a cost worth paying, protecting and fighting for, even when it isn't pretty or kind or easy.

Sometimes the ugliest speech has paved the way for this freedom, solely because it has raged the loudest and offended the most. Larry Flynt fought for it, so did the Klu Klux Klan.

Other times the silenced voices have spoken volumes shining a light on the cost of human rights and personal freedoms. Nelson Mandela did this from a prison cell, while Anne Frank did this from an attic.

In this country, we have the hard-earned right to free speech and you don't have to be a billionaire to have a voice or speak your mind.

However, currently, here in the United States, there is a self-proclaimed billionaire speaking his mind:

"They're killers and rapists." - regarding Mexicans.
"Laziness is a trait in blacks." - regarding African Americans.
"I hate it, I'm a traditionalist." - regarding homosexual relationships.
"Disgusting." - regarding the opposing counsel in one of his trials who needed to take a break to breast-feed her 3-month old baby.
"You have to treat 'em like shit." - regarding how to handle women.

Donald Trump said these things and so much more. You can quote him all day. You can quote him in context or out of it. And, it just takes a few minutes on the internet, on the news, or on a twitter feed to find some other quote to provoke. Words, not just from the current Presidential election race, but spanning back decades.

One quote is a mistake, two quotes is a judgement call, but three quotes, or in this particular case three-hundred quotes, is a pattern.

Sadly, on June 12, 2016 an American walked into a night club in Orlando, Florida and opened fire with a semi-automatic rifle. In a brutal act of hate and terrorism, he murdered 49 human beings and wounded another 53, many of whom have years of recovery ahead of them.

Afterwards, Donald Trump did not call for gun-control or increasing access to mental health treatments or promoting tolerance through education, but instead, again called for a ban on Muslim immigrants, despite the fact that the killer was an American, born in the United States to parents who had legally immigrated here. 

Trump has a lot to say on immigrants, but has selective memory on his own linage. Donald Trump's grandfather, as a teenager, was an immigrant from Germany, who as an adult, actually tried to return to his homeland. But, Germany deported him back to the United States as a draft dodger, since he managed to avoid his mandatory military service in Germany during his years in the United States.

No matter our politics or beliefs, it is time to stop the hypocrisy. Freedom of speech is not the right to loathe or voice outrage at acts of violence, whether organized or random, while routinely supporting hate or bigotry in lesser forms. 

Freedom of Speech is not an act of hatred to murder people because they are different from you or their belief system is different than yours. 
Freedom of Speech is not an act of hatred to kill because you believe your God is more important than someone else's God.
Freedom of speech is not an act of hatred to belittle others because you believe you are of more worth then someone else.
Freedom of Speech is not an act of hatred to destroy other cultures because you value your culture more.

Freedom of Speech is not an act of hatred to spread bigotry and fear in an attempt to justify your cause.
Freedom of Speech is not an act of hatred to victimize others in an attempt to empower yourself.
Freedom of Speech is not an act of hatred to demoralize humanity in an attempt to ram your morals down someone else's throat.

Sadly, Freedom of Speech does not protect any of us from hatred. 
But, it does allow us the right to speak out against it. Loudly and often.

On November 8, 2016, many Americans will walk into voting booths. There is a good chance, in a brutal act of democracy, some of them will vote for hate by casting their ballot for Donald Trump.

But, one of the most amazing things about Freedom of Speech is that we have the right not only to speak with our voices from our hearts, but also the freedom and the right to speak with our votes.

We are the roads to our own enlightenment.

As a survivor, I truly know it's an act of freedom to speak up for our own survival and the survival of others. It isn't always easy. It comes at a great cost. But, we must speak up.

I am not telling you who to vote for, what to vote for, or how to vote for it, I am merely speaking up, like I have the freedom to do.

Wish I was there.

Following brain surgery, months of recovery, and the death of my grandmother. my sisters and their families when on a vacation to Costa Rica. During a conversation, before they left, one of them casually mentioned that after the year we had all had they just needed a break. It had not been a long planned or thought out trip, it just kind of fell into place. They sent wonderful pictures during their getaway of laughter and fun. Lush jungles, gorgeous ruins, cool dips in the pool, and quiet moments reading books in an exotic locale. It was truly beautiful, and I wasn't invited.

Don't get me wrong, after everything that had happened: the loss of all savings, the weight of the financial burden of medical care and living expenses during the recovery time off, the lack of any additional vacation time to take off from work, ongoing recovery, and the fact that a lingering side effect to my brain surgery was an aversion to heat where changes in temperature could literally make me physically ill, I truly was in no position to go with them on this much needed vacation... but I wasn't invited (even though no one needed a break more than I did).

Unfortunately, survivors of illness, crisis and trauma, often don't have a lot of options for escape. Beyond the monetary, current health, and time off logistics, there is literally no way to take a vacation from our own bodies and emotional stress. We can't take a break from the inner turmoil. We can't walk away from our own pain.

It is difficult to watch others go on with their lives, have the luxery of such simple pleasures as "down time" and the ability to do something as simple as just take a vacation, when we are trapped in the struggle of our own lives.

It can create feelings of isolation, longing, anger, jealousy, sadness, regret and even shame. There is self-loathing and hatred to feeling this stuck in our own particular crisis. It is impossible to explain or adequately express to others. It can feel utterly hopeless. And, these feeling have a way of compounding onto and compressing down on each other.

Work days can be literally oppressive. But, even our days off can be relentless. They involve collapsing into our own bubbles because we are beyond exhausted, or additional grueling, often painful doctors visits, or struggling to live up to the routine responsibilities of existing, when we are having enough trouble just surviving. 

We don't get any real escapes. 

There are no true vacations during recovery. And, recovery doesn't happen overnight. It can take weeks, months, even years and sometimes a lifetime, long after everyone else has moved on. 

And, a sad truth is that sometimes the longer a recovery takes the harder it can become to recover. The longer someone is down the harder it becomes to get up.

In our own survival, we are not invited or blessed with the gift of escapes. We miss vacations, parties, get-togethers, date nights, and utter relaxation, in general. Literally and figuratively we miss out.

But, we can't blame others for their specific blessings and we can't give up the search for our own healing. We need to be happy for each other, and fight for our own moments of happiness.

Make room to inhale when you feel like screaming. Find beauty in darkness. Steal moments of light. Laugh when you need to cry. Cry when you need to exhale. Take a breather, it may be the only vacation you get. But, a second of grace is better than none at all.

Don't waste time wishing you were there, embrace being thankful you are here.

Our Imitation Game

Recently, I rewatched The Imitation Game with Benedict Cumberbatch, about scientist Alan Turing and his work during World War II to break the coding of the Nazis' Enigma machine. Although having read numerous books on the subject, watched a variety of films and television shows depicting the story, as well as a handful of documentaries on this topic, over the years, I realized I had never actually read Alan Turing's paper, "Computing Machinery and Intelligence", in which his Imitation Game is presented amid the topic and debate of eventual digital computer technology and the advancement towards artificial intelligence. 

It surprised me to realize this, as I tend to be someone who initially seeks out the source material well before adsorbing the material which it inspires. But, I rationalized that I had merely circumnavigated my way around this particular source information due to a personal aversion to math. However, I decided it was high time I at least attempted to read this Turing Test paper.

I can honestly say only a handful of things I have ever read shocked, delighted, and inspired me to thought as much as "Computing Machinery and Intelligence" did.

Years after helping break the Enigma codes, Alan Turing wrote this paper, at the height of his career, when he was thirty-eight years old.

And, far from being an inconceivable, convoluted scientific text, only someone with an advanced doctorate could comprehend, it is a concise, provoking, witty, open-minded, often humorous, philosophical and clinical debate, mixed with personal ideology, on what constitutes thought, humanity, intellect, consciousness, extrasensory perception, Man, God, and machines. 

Scientifically, the paper's ideas are still debated today, proving to have been both highly influential and widely-criticized. But, for me, beyond the science, there is a genuine and powerful humanity to Turing's thought process.

Uncomplicated and simple in its presentation, the paper is frighteningly insightful in its forethought and computer advancement predictions, with an underlying depth in applying what are basic human beliefs and assumptions to the complexity of the idea of computers and the eventuality of artificial intelligence. It's revolutionary in its basic philosophy and rather mind-blowing to discover its relevance almost seventy-years later.

All one would have to do is pick up a paper or turn on a news channel these days to be struck by the increasing levels of violence, terrorism, intolerance, and hatred becoming commonplace in our world. Within that truth and current mindset, my thoughts have been drawn again and again to a particular passage in Turing's paper:

" 'The consequences of machines thinking would be too dreadful. Let us hope and believe that they cannot do so.'
  
This argument is seldom expressed quite so openly as in the form above. But it affects most of us who think about it at all. We like to believe that Man is in some subtle way superior to the rest of creation. It is best if he can be shown to be necessarily superior, for then there is no danger of him losing his commanding position. The popularity of the theological argument is clearly connected with this feeling. It is likely to be quite strong in intellectual people, since they value the power of thinking more highly than others, and are more inclined to base their belief in the superiority of Man on this power.  

I do not think that this argument is sufficiently substantial to require refutation. Consolation would be more appropriate: perhaps this should be sought in the transmigration of souls." 

Turing was plainly dismissing Man's idea of supremacy in the context of facing artificial intelligence, through his "Head in the Sand" argument. He also speaks in his paper about solipsism, the view that the self is all that can be known to exist. 

But, the same theory applied to our current humanity's behavior is equally relevant. 

We are killing other people because we believe our rights to be more important than someone else's rights. 
We are bombing other people because we believe our God to be more valid than someone else's God. 
We are shooting other people because we believe our sexual orientation to be more normal than someone else's sexual orientation. 
We are electing and empowering fear-mongering people because we believe our fear to be more righteous then someone else's fear. 
We are raining war down on other people with our hate because we believe ourselves to be more important than someone else.

The basic premise of Turning's paper is the contemplation of the question, "Can machines think?" and justifying his arguments about how to better answer and test the underlying theory of that question. 

But, maybe for us, in our current climate, the larger contemplation should extend to "Has Man forgotten how to think?" 

Alan Turing wrote a paper about a digital world of intelligence that was only beginning to be imagined. He would die four years after its completion, before seeing the actual scope, of that computer intelligence, grow in leaps and bounds. But, he had the foresight to know this and concluded his theory with this simple statement:

"We can only see a short distance ahead, but we can see plenty there that needs to be done."

Those words are profound in their simplicity and relevant beyond his theory's intent.

As the survivors we all are and are attempting to continue to be, we need to stop fearing the danger of losing our commanding positions, overwhelmingly accept the rights of other people's positions, and individually learn to embrace that there is room for all of us. Room on this Earth for all of us to struggle, to share, to love, to contemplate, to theorize, and to believe without seeking to destroy another's belief.

We have take the time to stop and look. If we do make the conscience choice to see with better eyes, we all have the potential to see clearly that there is plenty there that needs to be done.

Now Showing

In a Disney movie, if the main character is not already an orphan, there is a good chance they are going to lose a parent in the first few minutes of the film. A more dramatic movie will rely on a parent successfully fighting to save their child from impending danger. If the film is about a psycho killer and the main character has a dog, there is a good chance the pooch doesn't make it to the end credits. In action pictures, the supporting character black guy usually dies, and in horror movies, they tend to kill off the secondary slutty, white girls. 

There is a predictability to these formulas. Despite people's protests about the lack of originality and bias in their creation, every year a great many movies following these formats experience overwhelming success. Cliches are cliches for a reason.

Trauma, illness, and crisis follow no such formulas. The innocent get hurt, the healthy gets sick, and very bad things happen to very good people. Life is extremely different from films. The good guys do not always win and a fight well fought does not always turn out victorious.

Predictability goes right out the window. During these times, twists and turns, altered routes and unexpected outcomes become our new normal. There is no decent way to prepare and no way to know how or if it will end. 

However, these life-changing events have something in common with movies. 

They often leave us in the dark on the edge of our seat. The price of admission is much higher than we want to pay. And, we all desperately long for a happy ending. We are along for the emotional ride.

In the end, we may not have chosen the journey and we may not control the outcome. But, we have the ability to give voice to our own scripts, pick our own soundtrack, interact with the characters who matter the most, and share our unique stories. We don't have to sit alone in the dark. We can turn the lights on.