“I Am Not Throwing Away My Shot”

I’ve lost more than a few nights of sleep trying to decide how to write this post. How much of this part of my story should I tell? Do I err on the side of caution, keeping back details that some might deem too personal to share? Do I tell it all and risk being ostracized, being judged for things I will never be able to go back and change? I’ve vacillated between these polar points for months now and in all honesty I’m still not sure where I’ve landed. I suppose I’ll let you be the judge.

Theres is one thing I’ve been certain of from the beginning – this post wasn’t going to be political. The election and its aftermath have consumed my life, and consequently my writing, for quite some time now. I decided that what has happened, and is happening, in DC wasn’t my main concern.  What’s happening to me, directly, is extricable.  To use a phrase common to the the Hill, I’ve “flip-flopped” on that stance. Simply put, taking politics out of this chapter of my story would turn it into fiction, and telling my truth is more important than ever, since it’s one of the only things they can never take away (no matter what they tell you). To those of you wishing I had stuck with my original plan, I hope by the end of this you will understand why I came to this conclusion. Anyways, here goes.

On January 20, 2017, Donald Trump was sworn into office as the 45th President of the United States. A man whose smug grin reminded me all too much of the one my would-be rapist wore the first time I met him. A man who consistently tells me I am less than because I am a woman, who tells people I love that they matter less, or even not at all, because of the color of their skin, the religion they practice, the people they love. A man who vowed to take away the one piece of legislation directly responsible for keeping me alive.  He is everything I stand against and I am everything he thinks is wrong with this country. On January 20th, he placed his hand on the Bible, replacing the President I proudly cast my first vote for, seemingly defeating the woman I have admired for the better part of my 24 years, and I felt alone.  My country had chosen him, and in doing so had decided that I didn’t matter. I ignored the facts against this – the millions of women who had marched just one day earlier, the friends of all genders, colors, religions, who felt as outraged as I did, the possibility that it wasn’t my country, but the leader of hostile one, who had decided the election – and I let myself believe the awful lie that this country, this world, didn’t want me. It would be better off if I wasn’t a part of it anymore.  And so, on January 22nd I tried to kill myself.

This was not a cry for a help, something I would try to convince myself and others of in the days that followed, nor was it a way to seek attention or make a statement, things I would later be accused of.  Very simply, I wanted to die. For a long time I had been telling myself that I was a burden on my family and friends, that my illnesses, physical and mental, were causing them more pain than I was worth.  I convinced myself that they would be better off without me, and now it seemed that this new President, backed by the GOP and the millions that had voted for him, agreed. In retrospect I can’t believe that, whether this was true or not, I had been willing to let them win.

Suicide is complex issue, and I would be minimizing my decision if I blamed it solely on the current political climate (not to mention maximizing DJT’s influence on me). For the last few years I have struggled with severe depression and anxiety, chemical imbalances not created, but certainly made more oppressive, by a dual cancer diagnosis and resulting chronic GVHD. I spent almost 18 months months on unorthodoxly high levels of Prednisone, a steroid used to treat GVHD, whose side effects include aggression, irritability, severe mood swings, difficulty thinking and speaking, and chipmunk cheeks (I know that last one may seem inconsequential, but you spend a year not recognizing the puffy face in the mirror and tell me how you feel). Even with this drug, my physical health didn’t seem to be improving – an ulcer in my eye ruptured in January and required surgery in August, I spent the month of September in the hospital with pneumonia, and in early January my kidneys came dangerously close to failing.  Throughout all of this I watched as some of the most important relationships in my life crumbled, seemingly outside of my control.

I try not to deal in hypotheticals, but it’s likely that with a clear head I would have been able to handle all of that.  I have always prided myself in being able to shoulder whatever the world threw my way.  But since the age of nineteen I have been wrestling with an addiction to painkillers, an addiction that escalated in the last year to a point where I could no longer control it, or myself. More than anything, more than politics, physical ailments, or just plain bad luck, I hold myself in this addiction responsible for my decision to give up.

So, after one week in the hospital and two in a psych ward, I pushed aside my inner Amy Winehouse and said “yes” to rehab. This is a very long story made very short, but at almost 60 days clean, I can say, without hesitation, that that decision saved my life.

We live in a world where stigmas about mental health run rampant and addiction and suicide are largely considered taboo, but I have always been an oversharer, some would say to a fault.  I plan to tell a great deal more of this story, partially because it makes me feel better and partially because I hope that it might make someone else feel better, or at least less alone than I did in those dark days following November 8th. To those whose political leanings align with mine, I offer this – earlier this week Hillary Clinton spoke at the Women in the World Summit about, among other things, how she dealt with losing the election.  She said, “I just had to make up my mind that ‘yes,’ I was going to get out of bed, and ‘yes,’ I was going to go for a lot of long walks in the woods, and I was going to see my grandchildren a lot and spend time with my family and my friends who have rallied around me in an amazing way … so I’m doing OK.” If she can get out of bed (and into increasingly fabulous pantsuits) every day then so can I. I’ve spent enough time listening to Hamilton on repeat to know that, no matter what is happening in my life, personal, political, pop cultural, I am not throwing away my shot.

Title Credit – Lyric from “Hamilton” by Lin Manuel Miranda
(points if you can find the other reference in this post)

 

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“You Don’t Deserve a Point of View, if the Only Thing You See is You”

I listened to a little girl scream for hours last night because her mother wouldn’t open her eyes. The entire floor was at a stand still. IV pumps beeped but no one heard them, medication times passed but no one called to have them filled. I laid there in the dark, locked in the fetal position, and cried. Eventually my nurse came in, visibly shaken. Just hours before we had been debating the merits of True Blood vs Vampire Diaries, but we were silent while she drew my labs. When I realized that her hands were shaking, or maybe it was my arm, who knows, I finally couldn’t take the silence.

“Was she in here a long time?”

My nurse shook her head and feigned looking for another tube to try and hide her tears.

“She wasn’t even supposed to be here. ICU is full.”

In the last five years I have done my fair share of time in hospital beds. It has never been fun. It has always been scary. But this last week has been different.  The hospital has been overbooked since I got here. There are patients sleeping in beds in hallways, not just in the ER, but on regular hospital floors. Nurses are overstaffed, sometimes five patients to one. They are skipping their lunch breaks and working past their 12 hour shifts to make sure nights like last night are avoided at all costs. But it isn’t enough.

There is a tangible panic in the air.  Ask any patient, any nurse, any doctor, and they can tell you why. Donald Trump. Emboldened by his recent election, house Republicans have vowed to gut the Affordable Care Act (Obamacare, for those of you who haven’t yet realized that they’re the same thing), ripping away health insurance from millions of Americans.  They have no backup plan to replace it, and it is already killing people.  There is an open disgust here, for Trump and his followers, with no worries of being politically correct.  People who deal with illness everyday, people who have the decency to understand that these are human lives, not numbers to be debated, know that there is nothing political about life and death.

I’ve told my story before, but it never seems to be enough, so I will tell it again. When I was first diagnosed my private insurance, which I payed for out of pocket, had a lifetime cap of $750,000. It seems like a lot until you find out that Big Pharma charges around $1,000 just for a bag of fluids (the average patient receives about 4 bags every 24 hours). The provisions put in place by the ACA, first eliminating yearly caps, and later eliminating lifetime caps altogether, made it possible for me to afford 16 rounds of chemo, 22 rounds of radiation, 2 stem cell transplants, and 3 years of treatment for Graft vs Host disease. When I had to drop out of USC I lost that coverage, but because of the ACA I have been able to remain on my mom’s insurance plan, and had planned to be able to do so until I turn 26.  Now there is every likelihood that I will have to find my own plan, and with the ACA repealed, insurance companies will be able to deny me coverage because of my pre-existing conditions.  This is just a part of my story.  There are millions more like it.

This is just part of why “snowflakes” like me refuse to accept the outcome of this election, why millions are still protesting, why when you say “We survived 8 years of Obama, you’ll survive Trump” I hit the unfriend button. Because there is every likelihood that I, along with the far too many others in situations like mine, will not.  I am tired of mincing words, I am tired of being careful not to offend anyone, so let me be clear. If you support Donald Trump, if you are not making an effort to keep the ACA from being repealed, if you think Obamacare is the worst thing to ever happen to this country, you cannot care whether I live or die. Your prayers, your kind words, your good vibes, they mean nothing to me if you spend your time justifying what the current Republican Party is doing. Full stop.

Title Credit – Lyric from “Playing  God” by Paramore

“She’s Always been Hopeless at Hoping, Always Coped Badly with Coping”

2016 has been the most difficult, confusing, and heartbreaking year of my life. In January I made the decision to stay in Florida, hoping that a few months of focusing strictly on my health would be enough to get my life back on the track I had planned for it. In August I realized that it was going to take more than a few months, maybe more than the rest of my life, to get back what cancer took, and I said goodbye to Los Angeles, my city, my dream, my life I spent 18 years working towards. I spent months upon months in the hospital, trying to understand if the debilitating pain I was in was real or a figment of my imagination, a warning sign that something was terribly wrong or a just trick played by my brain because it wanted more pain medicine. I watched a friendship I have relied on since the second grade, a friendship I thought would outlast both of our lives, dissolve into nothing, not sure if it was my fault, not sure if I even had the right to be angry. I spent three days in the ICU with sepsis and pneumonia, wishing I was brave enough, selfish enough, to refuse treatment and just drift away with the pain. Over and over again I found hope, a reason to fight, an exciting new treatment, only to have ripped out from under me, setting me two steps farther back than I was. I cried happy tears when my best friend asked me to be her maid of honor only to spend a week on the couch surrounded by tissues when the world changed on November 8th and I realized we were on very different sides of issues I cannot overlook. The pain on the faces of my family, of the people I love most, is impossible to ignore anymore – the pain they feel for my suffering, and though they would never say it, for the suffering they endure daily because of me. I don’t believe in god, but if I did I would be pretty damn sure he’d lost control of any plan he had for me.

But above all of these things, these pains, physical and mental, I’ve begun to lose my words, and that scares me, hurts me, more than anything.  During my second semester back at USC after my transplant in 2012 I took Italian I to begin satisfying my foreign language requirement. I had never struggled with a class so much and it remains the lowest grade I have ever earned.  I found a million things to blame for my lackluster performance – the early time slot, the daily lectures, the new relationship I was in that made getting out of his warm bed and to those early, daily lectures on time every day a real challenge, but somewhere inside me I knew it was something more. When I relapsed and began more treatment, more chemo, it became clear that my struggle wasn’t with Italian, it was with language in general. I called a microwave a barbecue, a fan a wind maker, and it only got worse. I sat in class staring at windows, at whiteboards, trying to remember what they were called. I googled words before I made comments in lecture halls because I was nervous they didn’t mean what I thought they did.  More and more I found myself flipping through dictionaries, thesauruses, trying to find words that were on the tip of my tongue. Finally, I saw a cognitive therapist and was diagnosed with aphasia, which is, in short, a disease that causes a loss of ability to understand or express speech, caused by brain damage or trauma. In my case this damage was caused by 16 rounds of chemo, 22 rounds of radiation, and two stem cell transplants. In the last 12 months it has only gotten worse. I look up friends I’ve known for years on Facebook because their names just don’t sound quite right in my head and I’m convinced I’ve got them wrong. I lay in bed for 36 hours because I can’t form a single thought that makes sense in my head, let alone out loud. I write sentences on paper only to tear them up, certain that they’re garbage. Every night I go to bed wondering if tomorrow will be the day I wake up unable to speak, to write, to communicate, for good. I have let this fear stop me, most specifically, from writing. At the risk of sounding narcissistic, I have always been a good writer. I have loved it, lived for it, planned to make my way in life with it. I never considered it was something I could lose.

So I stopped. If I didn’t try I couldn’t find out just how bad it was. It wasn’t like the world needed my voice anyway. And then November 8th happened. I watched people I love cry in fear, in anger, in disbelief. I watched a country I love refuse to sit in silence and accept hate and prejudice and terrorism (because make no mistake that is what the alt-right is preaching) as its norm. And in the midst of the protests and the organizing and the refusal to back down I felt my words starting to come back. So here I am. A new blog, a new chapter, a new struggle to find the right words. I may fail but I won’t stop trying. Some days I will be too tired to fight, some days I won’t be able to do anything but lay on my couch in a pair of sweatpants watching Chopped, but some days, most days, I will find a way to get up and fight like hell.  It’s like Hill said – “Never stop believing that fighting for what’s right is worth it. It’s always worth it.”

Title Credit – Lyric from “Catch in the Dark” by Passenger