Sunday, November 2, 2014

Brittany Maynard

For the past month or so I've become slightly more optimistic and religious than usual.  What spurred this on?  The announcement that 29 year-old Brittany Maynard had made the decision to end her life with dignity rather than giving in to the unforgiving decline that accompanies the terminal diagnosis of a Glioblastoma.  I applauded her bravery in making this decision.  Not just because it was so final, but because of the extreme opposition she was met with from strangers.

The last article that was published in People announced that she wasn't firm in this decision.  If November 1 came and she was healthy and feeling fine, perhaps she'd reschedule it and look at her options then.  If November 1 brought with it pain and suffering and seizures, well, she had her answer.  A man with the same diagnosis came forward with an open letter to Brittany about how he'd turned his back on preferred treatment methods and had incorporated a more holistic approach.  He had outlived his prognosis and was improving a little every day.  This was really the only argument to her decision that I found acceptable.  He wasn't condemning her decision or telling her she was wrong or immoral, but he was shedding light on a corner of possibility that may have gone otherwise unnoticed on her journey.  He never tried to persuade her, only to educate her.

I'm not a religious person.  I have my beliefs and I will pray when the mood strikes, but I've never been the kind of person that put too much stock in the power of prayer.  Sure, I'd seen it work a time or two, but I'm more about action and less about hope.  She had hope but was taking action just in case.  I also have a slight belief in miracles.  I believe that they've happened, but I never thought I could bring one about or directly witness one.  But in these last few weeks I've been consumed with the hope that if a miracle was going to happen, that it would happen to Brittany Maynard.  I prayed for that miracle more than I've prayed for anything else in my life.  Maybe she'd have one last MRI that showed that it was shrinking.  Maybe it would be gone.  Maybe there would be a breakthrough in treatment that would buy her enough time for another miracle and another shot at the life she'd planned and would never have.  Maybe her mother wouldn't be left childless and her husband wouldn't be left a widower.  Maybe their dreams would have another chance.

I never once used this hope as an excuse to demean her decision, but God I prayed that it wouldn't be necessary.  Brittany Maynard became this huge presence in my life for some reason.  I've never met her and I had never heard of her until this came out, but I felt oddly connected to her and invested in the outcome of her life.  With each article released, my heart would break a little more.  I'd see the pictures of her fulfilling her final wishes and her smile was absolutely stunning.  I'd met someone like this before.  My cousin Sarah that passed away at the age of 20 from cancer.  She talked about her future until the day she was gone.  She had that same mile wide smile on her face until she could no longer summon the energy for it, and yet she held on.  And that was okay.  She held on for as long as she possibly could because that's what she wanted.  Had Sarah said that she was ready to go before her body was ravaged with cancer to the point where it couldn't even contain a single sip of water, we would have fully supported her.  Just because Sarah stayed doesn't mean Brittany had to.  They had a similar outlook on life.  They accepted their fate but kept the constant hope that maybe God would notice a mistake in the paperwork before it was filed.  Seeing these pictures gave me just a little more hope for that miracle, because how could God take something that shined that brightly?

And then the article with her Grand Canyon pictures was released and that mega watt smile was still in place but was in glaring juxtaposition with the words "final" and "last item on bucket list" and that hope started to crack a little, but the ferocity with which it continued to bloom was a little shocking.  The emotional investment I had in the outcome of the life of a stranger was staggering.  My heart was breaking for her, but so filled with that hope.  I could not for the life of me figure out why this was happening.  It had been less than a year since someone from my graduating class, a girl that I had befriended in middle school but lost touch with afterwards, had died from skin cancer.  I was deeply saddened by her passing, but that has not come close to the level of emotion I've felt during this.

And then it hit me.  It wasn't just that she was basically my age, her 29 to my 28.  It wasn't just because the idea of a life not lived is one of my greatest fears, or even that the enormity of her dreams could not compete with the comparatively small mass growing in her brain.  That those dreams would die with her and how much watching it happened hurt.  It was because I saw myself in her on a level few people comprehend.

I recently found out that I have an incurable brain disease.  It is in no way even comparable to a Glioblastoma.  It will almost assuredly never become fatal, let alone prematurely take my life.  It can be progressive, and it has been, more so than I'm entirely comfortable with, but this will never be a terminal diagnosis.  The description is "a serious neurological disorder", but no one that knows I have it really thinks of it as anything more than a nuisance.  It's not the comparison between the two that bothers me, because except in very severe cases, there is no comparison.  It's like comparing a freckle to stage four basal cell carcinoma.  The location is the same, but very little else is.

What bothers me is that something has gone irrevocably wrong inside of my head and that scares the shit out of me.  One day she's fine, the next she's dying.  One day I think I'm having a really unfortunate set of headaches, the next something is wrong with my brain.  Neither of these things can be fixed.  Both of these are inside of our most cherished organs.  Both things come with varying levels of existential crisis.

I'm scared.  And I'm invested in Brittany Maynard's life because even after everything that's happened to me, there was still a very small part that believed I was still invincible.  And I'm not.  Will I ever have to come close to the agony of her decision?  The chances are slim to none.  But that something went wrong inside of my brain, the one thing I like about myself above all else, my one true strength in life, makes me worried that something else could go wrong.  I didn't even notice it for over twenty years.  What will it take for me to notice something worse?

So, here we have a heart full of hope, prayers on top of prayers for a miracle for Brittany, for just one last chance at the life she wanted, an oddly intense emotional attachment to a stranger, and a small connection to her.  God, I wished so hard that she would wake up on November 1 and have the best day she's ever had in her entire life.  That there would be no aches, pains, swelling from steroids, no threat of seizures or strokes, and nothing but miles of blue sky and happiness at her front door.  I don't know that I've wished for anything harder.  My mind had corralled the two of us together without my noticing it and I think that fueled the fervor.  A miracle for Brittany meant that I would be fine.  That this was the worst it would ever get and that we would have long, healthy, normal, fulfilling lives.  And that Brittany would have become an advocate for those that never had an advocate before.  That her showing of strength and pride and dignity would become a beacon of light in a sea of suffering.  And that she would be around to see it and to keep it shining.

And then November 1 came and went without a word.  No news is good news, right?  And then about an hour ago I saw the article that told the world that Brittany Maynard's life had ended and by the end of it, I was sobbing uncontrollably.  I couldn't even get the words out to tell my mother, who assures me that my extreme emotional reaction to the passing of a stranger just means that I'm a good person and not actually crazy.  I've calmed down a bit since, but every time the article appears on my news feed, I cry again.  I may still actually be crazy, but I think I wanted her to live maybe more than she did.  She had resigned herself to this in a way that I hadn't.  Not that she lost hope, but she had to have accepted this long before her decision was made public.

All of my emotions aside, I want to say again that I applaud her decision to pass with peace and dignity and grace and that she could spare herself and her family the agony of watching her light be snuffed out before her body followed.  That because of this decision her light shines even brighter and touches more people than it would have in her needless suffering.  She's become a beacon to those that couldn't or wouldn't stand for themselves and those that never knew they had the choice to do so.  We have yet to see or understand the impact she has had or will have on palliative care, pain management and probably even the race to find long lasting treatments and cures for things we thought were incurable.  And the fact that she could stand with all of that dignity and grace in the face of such vehement hate and protest against a completely personal decision makes her shine brighter and in turn shines back on the ugliness that people have perpetuated in these last few weeks.  She could have buckled under the pressure of "But you don't LOOK sick" or "This is for money and attention" or "This is an abomination, a sin, God doesn't condone suicide" and even the mind boggling "You're only hurting your family by not letting them live through your unimaginable suffering the way I am for my children".  No, madam, your children will be permanently scarred by having to watch their mother wither away into a ball of misery before gasping for her dying breath.  Brittany was far braver in her choice to not suffer and to go on her terms.

This decision is the most personal decision anyone could ever make.  What's right for you isn't what's right for someone else and your personal preferences should have absolutely no bearing on someone else's decisions.  I discussed something similar with my family years ago and Brittany's passing has only cemented my decision and made me more vehement that my family carry out my wishes.  My greatest fear is being severely burned.  My entire family knows that should this come into being that I absolutely, 100% do not want to live through it.  I want to die.  It would be worse than the tortures of hell to force me to live through the agonizing recovery and disfigured existence of this against my will and beyond cruel to allow it to happen.  They all know and they all agree that if an when, they may wake me up long enough to say goodbye and then they'll send me flying.  And they're all okay with it.  Even those that believe that suicide is one of the highest of sins agree that that would be the best possible outcome for me.

Not to argue semantics, religion, or over philosophize the situation, but is it really suicide when death is/was imminent?  If a perfectly healthy individual that could likely live another 60 years decides that life just ain't worth living and ceases to continue living it, that seems wrong.  But if a young or old person that knows that A.) They would be dead already were it not for medical intervention and that they will have no quality of life and unimaginable suffering for what's left of it, or B.) Someone knows that in a very short period of time they're going to die and that it's going to be slow and agonizing and their mind will go before their body, is it really suicide or is it just altering the time frame?  Is it REALLY against God's wishes?  If that's your opinion, you're basically asserting that God WANTS these people to suffer needlessly.  What if altering the time frame was God's plan all along?  What if them taking control of their destiny was the entire point and they were meant to die on that day and time and not shortly down the road?  Are we now speaking for God?

If you can stand before me and say that if I threw you into a burning building with a loaded weapon that you would still choose to burn to death or if I threw you in there with your small child and a loaded weapon that you'd watch THEM burn to death, then I'll give you the argument.  Or, if you can stand before me and say with 100% certainty that YOU are the voice of God and can attest to God's every thought, whim, and plan and then prove it to me, I'll go your way.  Until either of these occur, respect Brittany Maynard's decision to alter the timing and save herself.  Respect her family's privacy and their grief and the fact that it was probably lessened by the preparation and peacefulness surrounding it.  And respect Brittany's memory.  Let them be in peace and know that it all happened for a reason, even if it was so devastatingly disappointing.

Wednesday, September 3, 2014

In Which I Unofficially Run for a Seat in the North Carolina Senate. Seriously.



I’ve been giving this issue a lot of thought, about five minutes worth (I think fast), and I’ve decided to unofficially run for Senate.  You see, the two options looming before us are both terrible.  They can’t even debate each other with any skill or credibility.  There were no empty political promises or in-depth discussions of the issues our state is facing.  It was pointing fingers and deflecting blame.

“She said she’d do X but then did Y.”

“I’d like to speak on that.  HE said he’d vote on Y but didn’t.”

This entire thing is a farcical exercise in futility.  There will be no winner here if either of them wins and they have no competition.  They treat everything important and financially vital to this state as a joke.  So, I’ve decided to give them a joke.

I, Heather Ray, am unofficially declaring my bid for office.

That’s right, y’all.

I know next to nothing about the internal workings of government.  I try to ignore politics as much as possible.  I have no shits to give about unpopular opinions.

So, I’m basically perfect for office.   Ignorance is key here, right?

The chances of me winning are laughable, but with your support, we could gather enough votes for them to notice.  We can garner enough attention and competition to let them know that the people are sick and damned tired of these money grubbing politicians serving nothing but their own personal interests.

Can you imagine the fear this would strike into their cold and empty little hearts?  That an unknown, unqualified, unemployed woman from a town with two stoplights can get enough votes to remain competitive?

What would this say to them?

It would say that we’ve had enough.  It would say that one false step and they’re done.  It would say that we’re finished taking it sitting down and we’ve decided to do something about it.

It will also bring a great deal of media attention to our fight.  There are thousands of us in the film industry alone that are trying to vote these people out of office.  Some of the offices have no competition and therefore no viable second option.  WE have to be the option.  WE have to be the change.

And if something went horrifically wrong (or right) and I won, can you imagine the hell that could be raised?  We would have a voice.  I have no “special interests” other than sleep.  And no one can really bribe me with that.  I have no shits to give about the game, glad handing, or backdoor deals.  I just want to fuck some shit up.

I am unemployed.  I work/worked in the film industry.  I have been a victim of violence and then the state for their ineffective advocacy programs.  I have a dog that injures himself without trying and a cat with AIDS.  I am impoverished and have no health insurance and no way to pay for health care, especially not dentistry.

What does this say about me?

I stand for the common man.  I stand for those that can’t stand for themselves.  I fully support film incentives and the thousands of jobs and millions of dollars it brings to our lovely state.  I am an advocate for animals.  I understand the need for a change in healthcare policy.  And I’ve got nothing but time on my hands right now.

Would it not be absolutely hilarious to watch the utter confusion on the faces of broadcasters and politicians alike when they start to tally votes and Heather Ray just keeps popping up?  Would it not be even sweeter to watch that confusion turn to fear when the votes reach a number high enough to become competitive?  I don’t really have an interest in winning, but I have an interest in fucking with people.

And fuck with them this would.

Let’s band together for this campaign.  I’m talking print ads, social media attacks, and Youtube campaign videos that are hilariously sarcastic, yet poignant. 

Let’s take the “campaign” viral and show them what the film industry is capable of achieving.  That we can take them down with laughter and Facebook likes.

That we are so much better at this game than they are.

That we are Marshall!  Wait, no.  That’s not right.  But it’s a good inspiration.

Let’s show them that we can take them out of office with ease, if not with dignity.

This November, let’s fuck shit up.

Write in your vote for Heather Ray.


Write in your vote for hilarity.

Let's start #OPHeatherRay

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