Insult to injury – there is urine in my bed

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Remember when things were just really easy? Like, you didn’t have a care in the world. You floated from one task to another with the ease and grace of a flower in the wind. No? You don’t? Welp, me neither.

So let’s move on.

So I have brain surgery, big whoop, right? Yes. Yes it was a very big whoop. But.. I did it. Well technically Dr. Spetzler did it. I just laid there. But still, I survived it. So it was behind me. And sure, I was in chronic pain, I had clear fluid pouring freely from my right nostril and everything in and around my mouth tasted like I licked the bottom of a stainless steel bottle. Still, I was rebuilding my body, my life, my health, my fitness. I may not have been making as sound of decisions as I am now, but I was walking against the wind and making decent progress. So then, just as things are settling out. I have Jason, I have my family (and my mom had made it through the worst of her recovery), I had my job, I had my 5 week old kitten (terrifying creature yet strikingly cute) and I had to have another surgery.

The conversation on the phone with Dr. Wright, who seemed both competent and kind, patient and knowledgeable, was quite matter of a fact.

“We think you should go ahead and come here and get that leak fixed,” He said.

“Oh, so I definitely need surgery?”

“Well, there’s a great risk of infection and given that your local doctor has left you to wait and see for healing for quite some time we think we are your best bet and surgery is what you should do. There’s a great risk for infection and there’s no reason for you to be in pain.” He replied to me calmly, without hesitation. He knew my case. He had done his research.

I didn’t doubt him, I didn’t second guess. I didn’t wait for a second opinion because frankly he was my second opinion and so I called the scheduler. She told me that Dr. Spetzler had a surgery time but no clinic time to meet with me. I was at a loss. I had to get out there before the doctor left town so that I could go back to school in the fall. I spoke and she spoke and we were both saying the same thing, “What if I/you meet with another doctor and Dr. Spetzler can still do the surgery?” We were clearly in agreement. Great, I have it! I celebrated over the phone, thanking the nice lady for working it out. Then, suddenly, I deflated and I said to her, “Aw man, this means I have to get surgery.” We had gotten so caught up in the excitement of planning that what we had planned didn’t occur to either of us. Though I think I got the short end of the stick because no one ended up cutting her head open at all. I hope she never has to face it.

The surgery prep felt like an uphill battle, with new residents guiding us in the wrong direction and a miserable appointment with a doctor who had no idea I had a surgery on the horizon despite that being the sole reason for our visit. His rudeness put me on edge. I felt myself worrying what he thought of me and my family. I felt judged and uncomfortable, unable to figure out how to act. We got stuck in it. Our voices went from celebration that we got on the surgery schedule and a desire to masquerade the surgery as a vacation by staying in a swanky hotel to a snide, heavy admonition of each other for not knowing how to handle the situation. It was a difficult day. It was just hard. The only thing that broke our fear induced impatience was the pain that consumed me all night and an inability to take anything for it. So we banded together. My parents, Jason, my family, we all stopped our fear and they made me hot towels for my head and the loving calls of support and cautious hopefulness began.

So now that surgery, surgery number 2, is again a moment in the past, something to put on my scouts badge, something that becomes woven into the tapestry that is my life. My familys life. Jason’s life. My friends lives. But I wake up in pain reminding me that the future is implicated by the past and we can’t erase only learn from it all. The present is all we have to control.

So in the present, on a whim and in the throws of falling in love, Jason and I got a cat. We named him Ridrod, he’s a baby. In my mind he simplified the unsimple. Comfort in the midst of pain. You see life threw our family and those around us a series of tragedies in the last year and we overcame, some we can’t even mention or name. We’ve face a lot, though we rarely show it, So Ridrod? He was just a happy distraction.

Well, he peed in my bed, on my gorgeous, brand new, got it on clearance and fanagled an extra discount for a tiny hole Anthropologie comforter. Just pee. In the grand scheme of things, not a big deal, maybe just a little insult to injury.

Considering the things I’ve seen between craniotomy and cat pee, that is kind of easy. Once you know what life can be, how hard and how tragic it can be, you begin to see the stuff that makes us feel like the beautiful breeze can’t blow your hair soothingly into the sunlight doesn’t matter. None of it matters. No amount of pee in the bed can stop our lives. Before and since surgery I have caught myself lost in the mundane and everyday. Getting stuck in it as I got stuck in the fear before surgery, Anxious about…Nothing. Really it’s all just insult to injury but it doesn’t matter. Don’t falter my friends, stay strong. Celebrate those moments big and small. I celebrated the moment they fit me in for surgery and while the magnitude of this second surgery didn’t register in my heart or mind, I celebrated. I celebrated because it meant that I, I get a chance to live. I celebrate our mundane conflicts, they mean we have one another to fight against. I celebrate my “boring” routine. I celebrate my challenging courses, I value my stress. It all indicates that I am here, living my second, or perhaps third chance at life. I even celebrate that stinky, nasty, icky, cat pee.

We may never have been as carefree as flowers in the wind but couldn’t we try to be? Lets start now and let our beauty shine.

Peace and love –

Samira

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Sweater

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After my first surgery, the first night in the hospital my mom stayed by my side, jumping for every moan and groan. In that moment she taught me what it is to be a mother. To be relentless for her child. I saw the same gusto in my dad as he asked questions and pored over article after article trying to understand and give comfort to what we were going through. He taught me how a dad protects. My sisters and brothers did the same. They lingered when they knew I was scared to be left alone. They brought treats and told jokes. They hugged me and laughed with me. they kept me happy and watched rerun after rerun of the office with me. They loved me so hard and their relentlessness proved to me what a family was and is. Even my nephew sat by me, as I lay in a strange bed, taking care of his Mimi. And Jason, he couldn’t stay with me, he knew my mom wanted to and should be there that first night. So he left me his sweater, a little piece of him until he’d be back. He bundled it next to me and it kept me still in those few seconds between a cry and someone’s response, the nurse, my mom, whomever. He left me that little piece of him that was such a fraction of his commitment to me at that time. He loved me through the fear and it was a love so natural and so full and all consuming, I don’t know that either of even recognized it as it happened.

This second time my family loved me so well. I knew they would. And Jason, in a miraculous return to my life, packed a peculiarly heavy sweater for a surgery in July in Arizona. I saw it tucked in his backpack but thought nothing of it. I was just glad to have him there, sitting in the shit with me despite everything that had happened. That first night in the hospital he gave my mom a hug thanking her for staying with me (she wouldn’t have it any other way!) and then he handed me a sweater. To keep me warm when it all just feels very cold.

Love isn’t in saying those key words. It’s in those moments where you know each other is there even when it’s tough or hard or far away. I’ve been blessed with a lifetime of that love, from family, from friends and from my partner in life.

And now? Welp, my second brain surgery is under my belt, I have a slightly larger scar and the right side of my head is substantially heavier than the left because every possible nook and cranny that could have leaked CSF has been plugged. Take that Flo!

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My stitches are driving me insane, it still tastes like metal in my mouth but overall, I’m ok. A few weeks will tell if the leak is fully gone forever since it was not a particularly obvious leak. I’m off the heavy pain meds and have been for days. I’m on day 11 of recovery – but whose counting? The headaches actually do seem better! I have hope on my horizon for the first time in a little while and I’m so grateful for the second chance to make good on a pain free life. Maybe, if the surgery worked, while I’ll still be living with Herbert, I’ll get to see how the other half lives. Perhaps for the first time in about a decade I won’t be the one with “just in case” ibuprofen at the ready. I’ll live like the pain free world. Careless and blissful, albeit a bit off balance.

Peace and love-

Samira

Inconclusive

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When you’re faced with a medical diagnosis, or even the fear of a medical diagnosis, you get to spend a great deal of your time in a mysterious limbo. Waiting and waiting and waiting for results. For answers. You have tests. Tests. You can’t study for them. You can’t prepare. Your whole life hinges on the in-between space between wellness and illness. So you abandon rational reasoning when the odds don’t pan out. You have a rather rare condition. You are so very young for this condition. Hold the phone you guys, I got something rare as a young person? Doesn’t that just mean I’m ahead of my time?

Let’s be clear for a second here, I have a brain tumor (or the remnants of one – Herbert), I have what is apparently a CSF leak (Flo, Herbert’s more fluid and free spirited cousin), I have a great deal of pain, but I am not sick. I am not ill or unwell. I am capable. I am strong. I am brave. I am resilient. I am still here. I’m still me. I’m under this veneer or bitchy humor. I’m hovering right below the surface. I’m still here.

So, being a healthy person with a brain tumor, I find myself in this predicament of passing tests. Tests I cannot understand. Images that don’t speak to me. Words that fall meaningless on my heavy ears. And the worst part of all? They are images of me. Words about me. I cannot understand them. I can’t discern meaning. I’m a scholar and here I have no knowledge. I have very little insight into this. I know what my intuition says about my health. I knew Herbert was there all along. I just never knew how to say that. But what’s the answer? You take the tests, you get the results, but you don’t have answers.

One doctors tells me the CT is clear. A leak is clearly visible. Then he changes his mind. Another says the leak is unclear. Then he changes his mind. One says the nerves are dead. Another measures my hearing as it slowly tries to return. The nerve is not dead. One tells me Herbert has broken down. Another tells me the MRI is inconclusive. One tells me to wait and see. One tells me to act. One tells me to fight. One tells me the fight is won.

It’s conjecture. It’s inconclusive.

We take tests. We get results. We don’t ever get answers. That’s for us to decide.

We are active agents in our own lives.

We decide the answer.

I can’t control Herbert. I can’t control Flo (what a B). I can’t read charts or graphs or MRIs. I don’t want to research. I don’t want to know every miserable possible outcome. I won’t. I can just trust.

I can only trust the voice that wavers least.

Get the surgery, Dr. Wright (from Spetzler’s office) told me over the phone. It was clear. And his voice led way to mine. Strong, decisive. Conclusive.

I get surgery this Thursday (#braintumorthursday!) to repair my leak. Flo, your visit is coming to an end. Whatever happens, I found my voice and trusted it. Now, all I can do is hope I get a tan tomorrow in Arizona before I have to put that gown on and be exposed on an operating table again.

Our results will always be inconclusive, our answers won’t be. Here’s to taking a leap.

Peace and love –

Samira

Just, please, give me a second.

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The course of our lives change every moment. It sounds flippant to say that every last second of every day matters but it does. Every move we make has ripple effects in our lives and those of others. Our lives can change in a split second.

My life has had various seconds where I saw the change that was about to happen. I anticipated it as it was coming. I’ll never be the same after this moment. Finding Herbert late at night in my home was one of those moments. Lets be clear, Herbert wasn’t Herbert then, he was no persona. Just an asymmetrical mass. “Is that a brain tumor?!” I screamed to my sister and her only response was, “well technically it’s next to your brain.”
Herbert was just one of the many moments I knew life would never be the same. His presence robbed me of my hearing on one side, my relative good attitude and my general health. He took the feeling in the right side of my head. He forced me, in a second, to face my mortality. He was one of many moments. The moment I met my college dance instructor and he stole my breath from me, I should have known, and part of me did, that nothing would ever be the same. The day I got into my Masters program and I ran barefoot from the mailbox to the front door in my plaid cherry creek boxers, I felt my world change. This time for the better. The day I said goodbye to my high school sweetheart sitting in a desk chair in my dorm I knew life would cease going on as I knew it. The day I picked all my nail polish off because there was a cute older guy next to me, nothing stayed the same.  The day I walked out on my last job. The moment I started the car. The moment I drove away from this or from that. The moment we skipped a beat. The moment we stopped to take it in. The moment we tried to take it all back. The moments we wasted on anger. The moments we shared with family. the moment I stopped laughing. The moment I was determined to laugh. It all changed. Every second changes us and in those moments we changed.

I teach students every semester and my main goal is to get them to see our interconnectedness. Our actions here today have a ripple effect across the world. We are complicit in the fate of others, good and bad. The resources we consume, our relative safety, our meals, our phones, our purchases, our words, our actions, our everyday. Someone somewhere is connected and our actions can foster wars that strip people of rights or if we push back we can interrupt cycles of oppression and poverty. We have a power in the state of the world.

Life is not fate. Life is not a Matt Damon movie where men in hats go through secret doors causing us to stick to the plans that are set for us. Life is change and transition. It’s messy and uncomfortable. It changes in a second. I just wish I knew which second would make the change that puts us where we are meant to be. If that were even a thing.

Peace and love-

Samira

Roads

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When I was a little girl my Dad would read me a great deal of poetry. He helped me understand it and cultivate my own sense for how to string together words and thoughts. He often read me this poem that later appeared and reappeared in my life, be it through schooling, in film or in a flash of my mind as life diverged in its many directions. Its about choice, coping, moving forward. It’s by Robert Frost:

Two roads diverged in a yellow wood,
And sorry I could not travel both
And be one traveler, long I stood
And looked down one as far as I could
To where it bent in the undergrowth;

Then took the other, as just as fair,
And having perhaps the better claim
Because it was grassy and wanted wear,
Though as for that the passing there
Had worn them really about the same,

And both that morning equally lay
In leaves no step had trodden black.
Oh, I kept the first for another day!
Yet knowing how way leads on to way
I doubted if I should ever come back.

I shall be telling this with a sigh
Somewhere ages and ages hence:
Two roads diverged in a wood, and I,
I took the one less traveled by,
And that has made all the difference.

I read it this morning, as my heart sunk with doubt, fear, distrust, dismay and love. Love. Who to love and how to love and love lost and love found. To forgive and stay or forgive and run. And who should run alongside me?

And all along there is a shadow over me. What will the MRI show? Will any of these worldly worries matter? I spend each day wondering what they’ll find next and if I even care.

Frost’s poem is nice but what happens when all the roads diverge and you can’t even find yourself well enough to figure out which is the one less travelled by.

Peace and love-

Samira

Panic Rising

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Yesterday was 6 months to the day that I had brain surgery. I spent yesterday afternoon sitting between my parents and one of my closest friends waiting for my turn to be screened. To be screened. To be examined. To be poked. To be prodded. I waited. For an answer. For a resolution. For an absolution. I dreaded that day. As it crept in closer I felt the panic rising in me. Rising up into my gut, clenching my heart, consuming my throat, tearing my breath from my mouth. I felt it creep up through my heart and into my mind. What if….

I made it this far only to stumble.

The MRI induced panic has been no match it seems for my life. I feel I am facing challenges that are just beyond my ability to bear. A love lost returned with hope that I thought had been shattered. A new love, waiting patiently for my answer. A burden of 2 people’s happiness let alone my own. Regret, loss, hope, fear, retribution, despair, hate and love all wrapped up into one messy package. A package I am not sure I can bear the weight of. I have spent the last several months trying to learn how to relinquish control. To let life take its course and I will be its willing passenger. I will wait for life to show me its course. I will allow life to find me, to control me, to show me its beauty. Now? I am told from all angles that I must decide. I must choose. Everyone seems to need or want something from me. Everyone seems to need or want my answer.

I feel that panic rising. It feels like that last surge of energy before sickness takes over. It’s all encompassing. It’s overwhelming. There is panic rising in me. Panic that I cannot see into my own future or even know my own present. There is panic rising in me that I will have regret. There is panic rising in me that it may not even matter once I have the results of my MRI. Love is supposed to be beautiful, to carry us through. I feel stuck in the mud with no one to pull me out. Drowning in the quick sand and the harder I struggle the further I go. Panic is rising.

My mom says that when we are born God writes our fate across our forehead and no matter what we do we cannot interrupt the forces of fate. Destiny. She tells me that everything happens for a reason. My sister tells me that God gives us no challenges that we are not strong enough to face. He only gives us a burden we can bear. My best friend is praying for me as we speak. If life is based in faith, in hope, and in destiny then why must I choose? Surgery or radiation. Hearing or smiling. Life or death. Love or loss. Happiness or sadness. Why must I choose? Is it because somewhere along the way I stopped believing? Is it because I lost faith when I saw loss? I believe in what I can see. I believe in family, in love, in compassion. Then how can I choose? How can I put words to this burden I don’t feel that I can bear? I hope whoever is out there controlling the puppet strings has a wordpress account…

I feel that panic rising. It is the only thing that interrupt the numbness of waiting. Waiting for answers, waiting for health, waiting for love, waiting for myself to choose. I feel such panic rising.

Peace and love – whatever that even means –

Samira

Falling slowly

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We’ve all had that feeling, you know the one. You fall in a dream and you wake up with a start bracing against your bed because your stomach actually dropped from the sensation in your dream. It’s a feeling that leaves you waking disoriented and perhaps a bit embarrassed. Your dreams and your reality merged into one another for a moment. You lost control of your body and until you woke up there was nothing you could do to break that fall.

Sleep is a funny thing in that way. You give your body over to a greater force. You rejuvenate but you let rationality go and your inner workings take over. Perhaps that is why many fear sleep, or resist it. That’s why you hear people glibly say, “I’ll sleep when I’m dead.” Sleep takes a hold of you, exhaustion forces your hand. You can’t stop the dreams that come.

Often when I close my eyes, I feel like I am falling. I like to think its my body relaxing as I feel like I fall through the mattress floating in some kind of in between space. In reality it’s my vertigo. Without my eyes to regulate my balance my body enters a free fall, only it’s not part of a dream. I have not dreamt that I am Superman flying through the sky nor have I dreamt I jumped out of a plane. There’s just darkness, a floating sensation as though my body goes up and down over invisible waves that threaten to keep me awake. Sometimes I manage it. I spin it into something beautiful, like it’s my spirit falling but then taking flight. Other times the fear takes over wondering if this slow fall through the universe of my mind is another drop in function. I suppose next weeks MRI will tell.

Sleep is a funny thing. I can often sleep through my pain, waking only at its most severe point. The point when even my most inner self needs my rational body to take over. To medicate, to meditate, to interrupt the pain. I crave sleep but often I dread it. Having tried so hard to cultivate a reality within my reach, giving myself over to something so profound each night is daunting. I am never sure how far I can fall before I need someone, something to catch me.

It’s #braintumorthursday today. A day of advocacy for those who have experienced brain tumors in some form. And today, as I write, I advocate for all the people who didn’t get any restful sleep because the dreams they dreamt while awake were no match for those they dreamt when they were asleep. I suppose when we slowly fall all we can do is prop each other up.

Good morning.

Peace and love-

Samira

Do you have a test tube?

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It’s been a while since I sat in a dark room scribbling out my ideas for a post in my phone, but here I am, Late at night, updating the Internet. What a life I live!

Life has been busy as of late but in a different and potentially more fulfilling way than it has been in a while. I have more than enough work at the university to keep my brain from atrophying over the summer and I even taught my first day of summer school today! I have been socializing like a mad man, seeking to fill the void left as relationships changed but more importantly to see where I fit in (or don’t) and who and what makes me happy. I’ve never had more confirmation in life that I’m on the right path.

Life has been an adjustment though. Living with Herbert is not as easy or straightforward as I would have hoped. He gets tired before I do and drags me down with him. I find after a few hours of work and an hour at the gym my body is exhausted beyond compare. I often find myself waking up not really sure if I had made a conscious decision to go to sleep. Then as night falls the pain returns and I find myself faltering in my resolve to “be greater than the pain.” I do the breathing and I focus on anything but the pain but at the end of the day it’s there. It’s not a manifestation of stress or an inability to handle a headache, it’s a tumor and it hurts.

I’ve been living with a minor CSF leak for a while now and while I laugh off the way it pours from my nose when I exert myself, in reality it hurts too. If I sneeze I have to take time to gather my thoughts and let the flash of pain subside. Coughing? Well don’t even get me started on that! Brushing my teeth? I just hope I don’t gag. Such small and basic tasks daunt me making the big things like PHD school look easy (kind of – let’s be real it just looks easier not easy!). I finally spoke to the doctors in Arizona and for the most part they confirmed what I heard from the doctors here. There was a moment where the doctor on the phone (a Persian by the way – yay brother from another mother!), in explaining to me that I have to “collect” my CSF fluid asked me if I have a test tube. Do I have a test tube? Hmmmmm. Nope.

No one asked me questions like that before. No one ever asked me if the “discharge was coming from the ear or the nose” before either. Life got weird. It’s almost been 6 months since someone saw the inside of my head. 6 months since I woke up being grateful for life. 6 months since I saw my family suffer in a waiting room. 6 months since I got a second chance. 6 months since I survived brain surgery. 6 months since I started to relearn how to balance. 6 months since I stopped being able to hear.

It’s been half of a year. In my life I’ve lived that period of time 54 times. In aggregate it doesn’t seem like much but in this 6 months I’ve loved and lost. I’ve cried and laughed. I’ve pretended to be ok. I’ve let my guard down. I’ve let new people in. I’ve fought. I’ve studied. I’ve learned. I’ve shared. I’ve survived.

No longer can I say I just got brain surgery. Even though the effects still drag on me, if I made it 6 months I survived it. Now?! I stop being the brain surgery patient and I relearn how to live with Herbert. Or whatever is left of him. And I relearn who I am. Life is about transformation. Life is about the dirty old caterpillar that thought the world was just a big pile of dirt until he woke up as a butterfly and saw 2/3 of the world in 1/3 of his life.

With every day our reality shifts, our outlook changes. Every person we meet, every show we watch, every tear we cry or joke we laugh at – they all constitute our reality. They construct us and constitute us and we transform. Sometimes we even blossom. In two weeks I’ll have an MRI. I’ll see what became of the ordeal I survived. Until then, I’ll be here, living with Herbert and crawling out of the dirt so I can fly.

Peace and love –

Samira

Nice is as nice does

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Transition is a funny thing. It is altogether liberating and terrifying at the same time. Given that there are some things that ought to remain constant. The core of who we are, the people we are socialized to be, at some point a percentage of that person is cemented, we become set in our ways as they say and very little can rock our routines. There are the rare life events that change us: violence, illness, loss – those that won’t happen to me things that always happen to each of us in turn. But ultimately our reactions are predetermined by the person we’ve been constructed as. We only know where we’ve been and we use that to inform where we are going.

I recently met someone charming and open, perhaps one of the few other “open books” I have met. At some point he asked me about my tattoos and reluctantly, after I caught him staring, I explained to him, in my very casual manner, why they exist. He stared, I wasn’t sure if he was in awe or altogether sorry he had asked. Then, after a few failed sentences he looked at me and asked me how it changed me, if I was “this nice” before. I’ve thought about that. Quite frankly I thought Herbert made me a bit more bitchy than I’ve ever been but I think the question deserves a slightly deeper analysis.

I remember being a little kid and my Mom and Dad would dress me up in my red velvet dress with the white eyelet lace around the neckline and the sleeves and we’d go to Rotary events. AS a little kid it seemed like a bunch of stodgy old folks schmoozing over fancy drinks with fruits and olives in them. I thought Rotary was a club that you used to make friends. You know, like the Babysitter’s Club. Sure there was always an underlying purpose but it was really to surround yourself with friends. As I got older my parents encouraged me to participate in the non party dress events. I remember one Thanksgiving in particular, long before we used cellphones and GPS, my siblings and parents mapped addresses that existed just slightly outside of my personal area of familiarity. I was set to go with my big sister and we drove to a nondescript brick apartment building and my sister took a box of donated food, turkey, stuffing, potatoes, marshmallows, all of it and ran it up to one of the units. It was a thanksgiving basket donation program sponsored by my Dad’s rotary club. Later as an ungrateful high school student my Dad signed me up for a Rotary Youth Leadership Awards Program (RYLA) and reluctantly I went. I learned about tolerance, hope, commitment to action, the four way test, principles of living in fairness to all concerned. Hmmm, this is all very interesting. It made sense to me. I was a blessed child, I never wanted for clothing, food, toys, or love. And what I had I LOVED sharing with my friends and family. I remember one assignment in high school to start a business and all I wanted to figure out was how that business could be socially responsible. I eagerly donated to causes without a second thought. When people asked me what I wanted to be when I grew up, I calmly said, “I’d like to be a Rotarian.”

I later learned to dissect and analyze the pros and cons of everything and while Rotary International is not a perfect organization, it is an amazing one. It was where I met my family of choice and where I understood that there was a place for those who place humanity’s concerns over their own. That it is not enough to tolerate your fellow human, you must learn from them, embrace their history and meet people where they are. I always just wanted to help people. I learned in college to push back against those that used misguided beliefs or faith to entice others into following them. I believed fiercely in principles of fairness, secularism and honestly. I believed in learning from and understanding people’s felt and expressed needs. People were equal but not the same to me. We aren’t color-blind of uniform, we are each unique and that is what gives us our power, our charm, our resilience and our hope. It is in our difference we form collective imaginaries of who we are. It is in our difference we define ourselves. It’s all very semiological and post-modern, I know.

I’m not a Rotarian (yet) but I am working on a degree that, at it’s heart, makes me an advocate for people around the world. It is a calling not a job. It is a place in the world for me to exist, more central to my being than any arbitrary career goal, bottom line, or material motivation. I don’t want to save anyone, I just want to help, as I was helped, I want to pay it forward. Is it problematic? Absolutely. Am I privileged to even be able to sit here saying this? Of course. Can I use my platform for good? I should. I will. It would be a disavowal to who I am if I didn’t.

So was I this nice before? I don’t even know that I’m nice. It’s rather self-indulgent and stereotypical to honor myself for my call to action to help. It’s not niceness, it’s construction. My parents, my upbringing, my friends, my siblings all made me this way, they taught me compassion, love and hope. My tumor? Well Herbert, and many other of life’s tragedies, taught me resilience, empathy, and respect. Respect for my body, respect for love, respect for my goals, respect for suffering. They also taught me to laugh. TO laugh through the pain, the heartache, the disappointment. Laugh through the journey.

I’m in transition. It’s strange, sometimes hard but I don’t expect any grand shifts to take place. My life is on a slow steady journey towards change, progress, fairness and love – maybe not for everyone, maybe just for a few of us- who knows. A song I heard once says “Love is the Greatest Revenge.” (Listen Here: http://www.youtube.com/watch?v=KiMKqDbDVp8) I believe that, and if I make it to some kind of grandiose end goal then great, if not – I’ll be here loving forward, getting my revenge on the universe, one little bit of love at a time.

As for my health – Well I’m dragging my feet on my decision of what to do with my CSF leak, having lots of caffeine as it helps the pain, trying to take way less ibuprofen to maintain an ulcer free future and waiting to hear back from Barrow Neurosurgical on my CT scans. I just passed my 5 month anniversary and I am going strong for the most part. Each day is different and new, some are better than others but I’m moving forward and my forward motion propels me to new things. I see promise in my future and am staying the course, working on my school projects and gearing up to teach for the summer. I’m also making time for fun, for as we know from facing our many challenges big and small – life is short.

With peace and love –

Samira

Leaky Faucet

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My headaches increased in severity around mid March. Given that that was about the beginning of the implosion of my personal life, aside from a few calls to the doctors on call and visits to health forums online I chalked it up to stress. The headaches were substantially less frightening with Jason at the ready to rescue me if need be.

Now, when one hits when I wake up alone in my house, I curl up with my face in the pillow, legs firmly underneath me in an awkward child’s pose, and I rock back and forth while I quietly cry and breathe relief in as I breathe the pain out. It’s rare for me to get a headache that hurts so bad that tears seem to make it feel better. The constant pain often rears its ugly head in a nasty fashion, as though to warn me away from complacency, A few weeks ago my pain reached a 9 out of 10, 10 being unbearable. I called my local neurosurgeon and the doctor on call in AZ and told them about my pain, the neck tension and throbbing, the way the pain radiates through my face, the metallic bloody taste that refuses to leave the back of my throat. The doctor on call in AZ recognized there was little of consequence he could do for me in the moment so he calmly and quite kindly told me to grin and bear it. In so many words of course.

My doctor in Colorado, whom I respect and trust a great deal, though I may not always choose his treatment ordered a CT. After three hours working in the waiting room along side a melodramatic patient tattooed with an out of place giant Sponge Bob on her arm being cooed by her older man fiancé I was called back to see the doctor.

Quite frankly I hoped he’d say it’s all in my head. (Ba dum che!) But he didn’t. He said I’ve sprung a leak! He told me that my mastoid bones were perhaps the cause or perhaps the point at which my skull was reattached to itself. I knew there was a dent right there! He said fancy words like “syndrome of the trephined,” it all sounded delightfully British. Then he told me I had a “great deal” of honeycomb like bones in my skull. I asked what use they were and he told me they were an evolutionary feature. I’m pretty sure he was trying to tell me I am extremely, highly evolved. He even told me I am welcome to believe that if it makes me feel better. It does. Like really. I’m an evolutionary wonder.

Anyway, He went over options (SURGERY!) and said it won’t kill me anytime so I can drag my feet on my decision. It’s not the type of leak that is oozing out my scar, it just moves slowly into my throat. Recognizing it is what i expected should not make me hyperaware of it but it might. I don’t really want surgery though I’m likely not granted a choice in it.

I’ve noticed almost everyone in my family tiptoe around me not wanting to ask or stir up any of my crazy about this. They quietly wonder, act like its no big deal, gently ask me questions, or fail to acknowledge at all. Or perhaps, like for me, the novelty has worn off and the sheer normalcy of my circumstance has stunned us all into frustrated silence. You see the thing is, I was told it was a good thing that I named Herbert. That I named my enemy, that I was coping. I guess it’s good to know who you’re facing (I imagine him to look like a cross between Nick cage and that weird meme).

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But now? I don’t want to name him, or talk about this or name this leak or talk about it. And not just because the only names I can think of for my leak resemble prostitute names (Waterfall, Fountain, Flo). I want it gone, fixed, adjusted. I want my life back, my fitness, my stamina, my pain free days that become rarer and rarer.

Let me however make one thing abundantly clear. I’m pissed and it’s not all that funny anymore (it’s still a little funny – ok we can make it pretty funny but you get it…) but I’m not sad. I don’t need pity or sympathy or empathy or to talk it out. I’m not a poor baby. I don’t elicit a sad frowny face emoticon because its not sad. It’s hard, it’s frustrating, it’s annoying, it’s even fattening, but it’s just not sad. I still, miraculously, take care of myself and my family and friends are abundantly caring. We stand in for each other and I’m grateful to those who know me best, those who surprise me with a key lime pie, coffee, patience, companionship, and those who inspire me with their everyday strength and accomplishments. I’m so proud and inspired by the people in my life. We share stories not to elicit sympathy or pity. Not to aggrandize ourselves and our pursuits but to learn, to share an experience in comradery. To make the skies a bit brighter. I share not because I want to talk about it (though it may help) but because people share with me and it drives me forward and heals them as we move alongside one another.

So Flo and Herbert are hooking up inside my head, and I hate them for it but you know, as I’ve said before, you can’t really hate something that’s a part of you. So life goes on, and I despite my lesser moments, go on with it.

Peace and love –

Samira