Stuck on the wrong side of a rom-com ending

You know those perfect romantic comedies. You know the one's right? The story where two people meet and it's kismet, instant connection, sharp wit and endless hijinks. The couple is invariably torn apart by a stupid friend, a drunken mistake or a disastrous bout of physical comedy induced accidents. In the end they always find each other. It always ends with a kiss and stops at happily ever after. Happily ever after. Well wtf happens after that?

They met, the fell in love, then they... got married? had babies? stayed in limbo? moved in? ooh made dinner? WHAT THE HELL DID THEY DO AFTER? The worst of these are the lifetime movies, the abc family made for TV holiday flicks and just regular dramas hell bent on a happy ending. Those end with a kiss after a horrifying bout of disaster. How many things go wrong before one can go right? The movies tell us how to get swept off of our feet. They tell us how to fall in love. They don't tell us what to do after. They don't tell us what to do when we wake up and can't decide which step forward is the right one. They don't tell us what to do when our paths start to converge and shit gets messy. They don't tell us what to do when one of us gets a weird somewhat threatening but totally benign brain tumor. They don't have a romantic comedy for that. They don't tell us what to do when you are stuck in that bit after the credits roll and the projector flicks off. Do you move relentlessly forward with the love predicated on that happy ending kiss? Do you give yourself over to sickness and health with or without vows? Do we expect from one another what we expect from the characters so readily caricatured for us? How do we know when the vision of what we have for our lives, built on media, built on stories, smash into the reality of what our lives are. This is more than just love. It's not just romance. I mean sure, sweep me off my feet. I want that, what self respecting person doesn't? But what about in those moments where no one has the energy to do the sweeping? What then? Where's the movie about that? I can think of a couple examples of films where families get sick, loved ones collapse and thier partners or families rise to the occasion. Abandoning their mistresses to be by the side of a dying wife or shaving their heads to look like their sick sister. And those gestures matter. I know that. Hell, I have friends at the ready waiting to shave a 2 inch by 4 inch section of their hair to help me rock my surgery scar with confidence. I have a friend that tattooed herself with me. I tattooed myself! Those gestures matter. But they don't fix anything. So do we wait for a big sweeping moment? Or do we add up the tiny moments, the ones that make us smile, the ones that make us cry, do we consolidate those to create a vision of our every day? Or do we wait for the fairy tale ending? The fairy tale beginning? Is there a fairy tale at all?

One of the closest people in the world to me is an unrelenting cynic. Me? I believe in people, in humanity, in hope. Despite all the horror I read about, the strife I have seen around the world, I believe we can do better. I can understand how that seems crazy to him. Often my conversations with this special person end with him shaking his head and telling me that I can't rely on fairy tales, to be grounded in reality. Sometimes I argue. Sometimes I accept what he has to say. Often I roll my eyes. Why can't life be a fairy tale? Why can't we treat each other in a way that makes it feel like we are flying, carelessly above our worlds in pure bliss. At very least why can't we strive for that? If you shoot for the moon you land in the stars right? Let's go to the stars! Yea the movies don't tell us what to do when the fireworks are done exploding, but maybe that is a sign we need to set off some more? Why can't we stay in that movie moment where the big things fall into place and so it is so easy to recognize the beauty in the small stuff? Does it always have to be so hard?

I don't know where I am going with this other than to put out there that the confusing mess that is life can be really beautiful. If we make it that way. I don't know. Maybe I am just so loving because I am calorie deprived, or cheese deprived, or candy deprived. Stupid detox. I am in love and in hate with it. Blurg. Whatever. I don't know. Let's leave it there. Let's all go dream of our fairy tale. Not just the ending, but the whole thing, the journey is all we have. If we've reached the end, we've got nothing else to talk about.

Peace and love - Samira

Watch out! The Cranky B*tch is back!

So the euphoria and tryptophan of Thanksgiving wore off, and left in their wake a horrible stomach flu that is spreading like wild fire to all of our friends and family. It also left behind a rather cranky, bloated, and easily annoyed b*tch.... Whoops, at least that positivity lasted about .2 seconds. I do what I can.

Though I am back to bitchy (that would be an excellent name for a song)I am not entirely hopeless. Cranky and hopeless exist on vastly different planes, so you can be simultaneously hopeful and excited while becoming very easily annoyed at every well meaning person struggling with the flu. Tomorrow I start a detox with a group of friends, propelled by a lovely woman I know from high school (she writes a FANTASTIC blog - check it out! http://msmorphosis.com). I am excited about that. I am excited to find a way to take back control of my body and have some people to be accountable to. It should be really fun, though I say that now and I am well fed and have easy access to candy, sugar, and endless amounts of meat. Take that away, ask me to add two shakes of discipline and willpower and maybe my hope will go out with the candy. We'll see. I'm really looking forward to the whole thing... call me crazy, but I am. I'll keep you posted how the whole thing goes. When you see a fit, skinny, cranky lady walking down the street, it's probably me. Wave at your own risk.

A lot of stuff went wrong today. Everyone is puking. So there's that. My brother in law collapsed at work from awful back pain. So there's that. I cried spontaneously while working out because someone made a comment about how my movement made them upset in their peripheral vision. So there's that. And it all seems so dramatic. SO DRAMATIC. It really shouldn't. What's the big deal, it's just some puke, pain and inability to control one's raging hormonal emotions. NO BIG DEAL. NBD. NBD for sure. I do some of my best thinking when shit goes bad. I was thinking today about how much of the things I'm mad about today were with me all along but I failed to see them. I didn't recognize that people had small amounts of pain, I didn't see them building until it was too late. I didn't notice people getting irked until they were mad enough to explode. I didn't notice Herbert until he built a high rise next to my brain, even though he made plenty of noise in construction. I just didn't notice.

There is a This American Life episode, a live show they did in theaters, called The Invisible Made Visible. It's a series of stories about the things we just don't see. Here's an excerpt "And today on our radio show, we have all kinds of stories of people trying to take things that are normally invisible to them and make them visible. I'm talking about unspoken feelings. I'm talking about people's secret lives." There is SO much that is just not visible to us. Things we choose to ignore, things we see but fail to acknowledge and the things we don't have space to see. It's interesting to think about when we choose to see those invisble things. When do they find meaning for us? Are we waiting to be ready for them? What made me see Herbert? What made me see someone in pain and give them a hug? What makes the scores of strangers who share intimate life details with me, from the woman at the gym, the man at the nail salon, or the mom in the grocery store, feel ready to share? Why now? Why with me? What makes the invisible visible to us?

My favorite part of the This American Life episode was David Rakoff's piece. Rakoff was a famous author, known for his sharp wit and cynicism. His ability to weave a story was without compare. His vocabulary was unmatched, he was a true wordsmith. I say was because he has since passed away. But in this episode, he was very much alive. He tells the story of what happened to him after a surgery that was part of his life long battle with cancer left him with a flail limb, a dead arm. He talks about how daily tasks that were so frequently taken for granted became tiresome and annoying. In his own words "Oral hygiene. Hold the handle of the toothbrush between your teeth the way FDR or Burgess Meredith playing The Penguin bit down on their cigarette holders. Put the toothpaste on the brush, recap the tube, put it away. You really have to keep things tidy, because if they pile up, you'll just be in the soup. Then reverse the brush and put the bristles in your mouth, proceed." Not impossible, just annoying. But in his dreams, in his dreams he can dance, like he used to. His movements are not methodical and calculated, but free. He describes this dream and then, just when you think he is going to walk off stage, just when you think he's had quite enough, he's awoken from the reverie of his dream and back to his reality, he dances. He gracefully owns the stage, moving back and forth, elegantly, stylishly. It was a performance that certainly brought me to tears and I had no handicaps to speak of when I saw it. It was beautiful. David Rakoff died shortly after this performance. In a This American Life episode dedicated to David, they play a story where he recounts his first experiences going through radiation, his first bouts of cancer induced anger. He describes it here, "They say that times of crisis are the true test of one's character. I really wouldn't know, since my character took a powder that year, leaving in its stead a jewel-bright hardness. I was at my very cleverest that year-- an airless, relentless kind of quipiness. Every time a complex human emotion threatened to break the surface of my consciousness, out would come a joke. Come on, give us a smile." I related to that. Rather than address any of the boiling emotions that bubble right below the surface I tell jokes. So dedicated am I to my humor that I tattooed the word laugh onto my forearm, neglecting to realize that strangers will look at my body and be compelled to laugh, at me, and my body. For no reason. Perhaps it may not be the best way to deal, but it is my way to deal. It is my way of making the invisible visible. I am seeing what my illness is, it is inscribed on my arm, permanently. So I don't see it how I should or how many might want me to. So I can't address my emotions with any degree of sophistication. Who needs that? Who needs sophistication when you are laughing so hard milk comes out your nose and you think, "hey, I wasn't even drinking milk!" That joke must have been really funny. I don't deal, I quip. When I try to deal it brings this terrible lull over the room.

Take my thanksgiving toast for an example. My dad starts us off with a cheers and thanks to all for being here, blahdy blahdy blah... No one is more excited to eat than me but I stop us. "um...er, um hey, I would like to say something..." My father gives me the go ahead, I wasn't really asking for it, I was going to say my piece whether they wanted me to or not. "Um, so this year has been weird," Oh crap, that wasn't how I wanted to start. I should have written this down. I have some solid one liners in my phone, I should pull it out, meh, too much work. I continued, "a lot has changed..." I wasn't exclusively talking about Herbert here but to list anything else seemed to cumbersome as my audience and myself were already beginning to cry. Except for the more awkward of them who seemed they either had a joke on the tip of their tongues or they were going to crap their pants from their discomfort (or their flu). "So with everything changing (SOB), the one thing that hasn't changed is our family and the love we share. I just wanted to urge you all to take in these moments, to be present, because we can't ever get them back. This, here, this is all we have. Cherish it." Then it got incredibly awkward, my sister made a joke that our tears would oversalt our turkey and my mom's bestie (yea, mom's have besties too) decided to raise a glass to my health. Well that certainly was not the point of that toast. Epic fail, now it was awkward. I nervously set about eating as much as I could, as fast as I could. So sincerity and emotion, while one of my strong-suits only serve to make things too real. More real than anyone wants them to be. So I veil them under jokes and rather bitchy mannerisms that admittedly take getting used to from the peanut gallery. It's not much but it is all I can do to make Herbert, in all his invisibility, visible. Because, afterall, you can't face something that you can't see.

Peace and love

Samira

This girl is awesome

http://www.everywhereist.com/2012/06/
Check out another very clever woman facing up to her BT, Steve.

Thankful

Tomorrow is thanksgiving, and while I cannot give up my harping that it is a holiday based on the sugar-coating of a deep history of violent colonization which has now become an excuse for us to propel ourselves forward into gluttony and greed, I also think it is a valuable opportunity to tell the people you love how grateful you are to have them without them looking at you like a total weirdo. You can call someone up on or around thanksgiving and say, "Hey, you...yea, you! I'm glad you are around, I'm thankful for you." Any other time of the year they may slap you upside the head and exclaim, "You poor sappy fool, you are at it again. Have you been drinking!?" Ok, maybe the exact reactions will vary depending on the degree of sappiness you and your loved ones are already prone to, but generally speaking, people can be put off my true, genuine, un-censored love. Which is a problem, but a problem that is exasperated by our constant drive for individual success and wealth. So we take a break each year (hopefully you do this more than once a year but if not, let the Turkey take you there) and love each other. Hopefully, thanksgiving is for you, as it is for me, a moment to cherish family. To cherish love, the cherish the gifts we are all given. Even the most unfortunate can find hope in the darkness and be thankful. I saw it first hand in the eyes of the women who had suffered violence in Northern Uganda, I saw it in the faces of the people in Denver living in a motel with no food for the holidays and I see it now, in my slightly a-symmetrical face. No matter what you are confronting, big to small, see past it, look around it, look under it or over it, but find the faith and the hope in it.

For those of you more worried on thanksgiving about your perfect pie and potatoes, relax a little. Even if it tastes like crap, people will tell you its delicious. Trust me. And, if it tastes like crap, it probably needs more butter. Trust me on that too, me and Paula Deen. And if none of that helps you, be thankful that you only have to make a weird congealed pumpkin pie once a year. Make the holiday less about food and football and more about love. Be grateful.

Obviously I am less angry and tired than I have been in a while. Two days of the stomach flu and a week off of school lets you know that what you are consumed with is not the biggest thing in the world. It's just a hiccup, a bump in the road. So instead of being angsty about Herbert, I am taking this opportunity to be thankful. For you. You reading, sitting at your computer, hunched over, hanging on my every word. Yes, you. I'm thankful for you. You and your ability to walk along side me in this journey. You for being forgiving of me not knowing how to face you with my news about Herbert. You for being there for me when I found out. You for hugging me when I was too awkward for words. You for annoying me to the point I wasn't mad at Herbert I was mad at you. You for sharing your story with me. You for keeping your super awkward story to yourself. You for your hopeful spirit. You for your endless resolve. You for sitting with me in my fear. You for making me laugh. You for listening to me cry. You for loving your family and showing me how. You for getting a tattoo with me! You for calling every night. You for the lunches full of laughter. You for the funny videos. You for showing up at every moment. You for putting your phone down and looking me in the eye. YOU. All of you. Thank you. Thank YOU so much.

So here I begin a running list of what I am thankful for...

I am thankful for my parents. Their devotion, not just to me but to all of their kids and family. Never in my life did I think I would learn to appreciate them as much as I have. They are my life, my light, my love.

My sisters - your conference calls make me laugh and cry. Your worry, your friendship, your love, I'm so lucky. I was born with the 2 best gal pals just waiting for me. Ready to be there, good and bad, ready to love me to death and annoy the crap out of me. You are perfect.

My brothers - you both give yourself over to others in your jobs, serving them, making them well, stronger, better, smarter, but it's like you never even realized you had done that for all of us long ago. You were both heros before you ever "saved a life"

My love - laughing with you makes life worth living, you are relentless in your drive, your ambition and your warmth - I'm thankful to have that around me. I carry you with me everywhere.

My friends and family - I got lucky to have all of you. ALL OF YOU

My hearing - I mean hey - if you've got it, flaunt it!

My mostly symmetrical face - again, if you've got it flaunt it (note: as I type I am doing a little diva swish with my head)

My dog Teddy - your little wagging nub of a tail is the best.

Airplanes - they bring us together

Dinosaur jokes - they make us laugh

Turkey - thanks for sacrificing yourself so we can eat you.

Music

Target stores- I know, my love of Target is pathetic.

24 hour fitness - gotta get that yucky energy out sometime!

The internet - ahh thanks for connecting us WWW

My heart - attached to you - present, living in today, not worrying (at least not right this second) about tomorrow, just enjoying this, THIS LIFE, this moment, here with you.

At the end of the day though, the thing I am most thankful for, is YOU.

Peace and love

Samira

One month out

Tomorrow it will be one month until my surgery. This time next month I'll be pretending to relax in a house somewhere in Phoenix while everyone nervously flutters around me. I will be in a panic. Today, I am already likely panicking. Or maybe not. I spent most of last night and today sick to my stomach. Is it Herbert? I'm not sure, his pushing on my brainstem and relentless commitment to my vestibular nerve could be the culprit because the incessant spinning I thought I had mastered has returned full force. Maybe I have the flu, maybe I was poisoned. Who knows. Either way it has been a less than ideal way to start my Fall Break. Not much of a break really, the looming weeks of finals ahead are weighing heavy over my mind. Then it occurred to me somewhere between the Netflix I was watching while lying in fetal position and my trips to the bathroom where I laid on the floor in fetal position, that it's almost time. It is almost time to face what is happening. Ouch, the stomach pain gets infinitely worse when I think about it.

I started being scared less of the outcome and more of the process. I had been so concerned about the endgame that I failed to think about what it would be like to be there, to be put under, to relinquish control of your body and give yourself over to an "expert." I am not so sure I want to do that. I am not so sure I have a choice but if I did I would chose to not have this in the first place. I know, wishful thinking, right? Wasted time is what that is, we can't live in what ifs, it's just wasteful. Just torturous. I am terrified of going under. Starting a day in one way and ending it in another. It's strange. It's like flying, you wake up in one place, go sit on a place and go to bed in a new place. It's strange, it's often disconcerting, isolating, you can become wholly disembodied through the process. How can you find solid ground when things keep changing?

So today I mostly slept and then got irritated when people told me that, no, you feel fine, you are fine. The incessant desire to glaze over what is happening with some kind of faith in something unseen to me is just annoying. You don't "know" that I will be fine. No matter what you have been through there is no undeniable truth to what you have to say. You don't have a guarantee, you don't have a good answer for me, bring me an expert, maybe then I'll listen, but you? You don't have an answer for me. AND PLEASE, stop regaling me with stories of all the people you knew that had ear infections and couldn't hear and got their hearing back. Is that what is happening to me? Oh, is your friend's wax buildup equivalent to the growth that is systematically finding ways to demolish my brain to make room for it's new condo complex? Herbert is both squatter and real estate developer. AND HE IS NOT GOING AWAY. You can will me better all you want, and I appreciate the thought and gesture behind it, but fundamentally denying the truth of my situation, building me up with a false sense of security and hope? That is not optimistic, that is unrealistic. I've spent weeks preparing myself for the various REAL outcomes and refuse to back track. I am moving forward, with Herbert, with my new normal. THAT IS OPTIMISM. Accepting your conditions, you life, your fate (if you are dead set on having some kind of certain reliance on the spiritually unseen) and living with them. Living a full life whether you can hear about it on your right side or not. That is belief, knowing that you can make it despite the insistence from your body that it is tired. I can live with this, hell, I can confront this, but that doesn't mean it is not real. Pretending it's fine will get me NOWHERE. Stop pushing me to change my attitude. My attitude is fine. I laugh daily, I cry seldom. I try like hell to be self reflexive. I am facing life HEAD ON, I am not skulking around, I am not giving up, and I am not pretending that nothing will change. I am owning my future, whatever it may be. I invite you to do the same for your life. Own it. Face it. Be who you always wanted to be.

My blogger profile begins with the quote "here she lies where she wanted to be." where she wanted to be. Not where anyone wanted her, not where fate placed her, not where Herbert thought she would be. HERE I STAND, WHERE I WANT TO BE. I am taking my power back bitches, and ain't nobody going to stand in my way. And no, don't correct the grammar in that sentence. I know, I did that for effect. Seriously.

I don't know more than I did about my future this week versus last, I don't understand my diagnoses any differently but I do know a few things. I am strong, I will fight for me and I will be amazing. I am committed to myself, my family, my friends and my health. I am committed to you if you are committed to me. I know that when I go into surgery I will be surrounded by so much love that I won't be able to give up when I feel scared. I know that I have a lot of people who care. I know I care about them too. I know that people mean well when they use their various tools for coping to change what this means to them. To argue my future, my present, my condition. So I know I don't fault them. I know that this month will likely be hell. I know that I will have good and bad moments. I know that in the end, it is out of my hands. It is in the doctor's hands. Maybe acknowledging that I can't do much now would be relaxing but that is not really my style. You know, relaxed... I'm more the compulsive worker outer, organic eater, and workaholic type of coper. But can you blame me? I am owning the only things I can. I hope my six pack makes it through the surgery. I wonder when I can work out again after it's over?

One month out you guys, home stretch. Or is it just the beginning? I guess we'll see.

Peace and love

Samira

Brain Tumor Thursday

I recently joined the Acoustic Neuroma Association as a member in order to gain access to their community because I had heard it had helped many people. Unfortunately I had some trouble accessing their site so in some of my more needy moments, I began looking elsewhere for a virtual brain tumor community to share with and learn from. I didn't want to go to Facebook, it somehow seemed like reaching out to my Facebook friends was both too intimate and too strange, maybe a TMI situation. SO I went to Twitter where the relative anonymity of me to my followers and the potential reach of a message seemed much more promising. I hesitantly began to share this blog as well as use the hashtag #acousticneuroma. I started searching for other hashtags and came across #BrainTumorThursday. That was on Wednesday, so I thought, I better start following some of these folks before tomorrow! SO I did and I woke up to the Twitter equivalent of a warm welcome from @TumorWarrior.

It was a good way to wake up, though I am still not convinced there is much universal advocacy work that needs to or can be done in regards to brain tumors I do think it is valuable to have a community around the issue. Initially when diagnosed, I treated my tumor like a closely guarded secret. I told people not to tell then wondered why people didn't want to know. I held it close to me and hid the potential it caused for disability. Shadowing myself from the outside glare of the judging public. That was very isolating. Very lonely. What I realized was that much of my hope had come from those that were willing to share in my journey by telling their stories online. I spent hours poring over the internet, meeting and connecting with people through YouTube and random blogs. I started to feel less terrified. There were also strange moments, glancing through the tweets on #BrainTumorThursday that talked about how unfair it is that there was no cure for cancer. This evoked many emotions for me. First was a sudden pang of guilt, like my benign tumor was not worthy of being in conversation with these more serious tumors. That there should somehow be a ranking of disease is inherently problematic. It is like when people empathize with me by sharing their own stories and start their sentences with things like, "not that it compares" or "it is nowhere near as bad as what you are going through." Why not? Every experience is valid in its own right. Why do we think that some experiences are more valid to process than others? That I felt guilty for not having cancer was very strange. I snapped myself out of that shit real quick.

Of course our experiences range in severity and seriousness and that is fundamentally true. But our experiences and their authenticity are personal, individual and contingent on our cultural experience. We shouldn't devalue our lives and our experience because it could be worse. And in the same breath, I will say we should also take that perspective that it could be worse and learn from it, and work to make it so it is not worse for anyone, anywhere, ever in the world. And I will agree, cancer is UNFAIR. Do I think it is unnacceptable that there is no cure? I think that is a loaded statement. Who bears the burden of finding that cure? IS industry preventing the cure? Is there more that can be done? As an academically trained brain I can't just say that anything is unacceptable. EVERYTHING IS UNACCEPTABLE. And with that being known we should all champion our causes. We should all find things we care enough about to think they are unacceptable and use our platforms to communicate and build community, mindfully, carefully, and thoughtfully.

I'm glad to have found #BrainTumorThursday and hope that the community will be as happy to have found me. The power of social media you guys, it's happening. This is happening. I don't know you, but we share something in common, or at least kind of in common, our brains and our bodies are at risk, now let's be friends.

Peace and love - Samira

Inspiration comes full circle

I've been writing for the last few months for 3 reasons. The first was to put words to the confusion, hope, patience, impatience, and struggle I had pouring endlessly out of my heart. The second, to inform those around me about what was going on, to not have to worry who was in or out of the loop. The final, and arguably most important reason, was to pay it forward. I was more okay because a few strangers shared with me. One via YouTube, another via a blog. They talked about symptoms, side effects, etc. I wanted to be that resource for someone else coming into this. Maybe my process could make theirs simpler.

So here I sit, in my bathrobe, procrastinating, not getting dressed because my phone dinged an email, from a dear friend sharing a personal struggle. I am patiently searchingly mind and my heart for a response that fits the one she honored me with, I'm learning to be patient with my responses and to let the thoughts flow when they are ready. So for today I decided to be mindful of her, to keep her present in my mind today and see what it evokes. I can abandon my selfish melancholy for a day and send my hope, my energy to someone else. Then as I began the day with that intention set I opened Facebook and this photo was the first post on my stream. It seems the universe is trying to inspire me to shine a bit brighter today. I'm not going to stand in my own way, not today at least.

Peace and love - Samira

oh boy....

So remember those tumor moments? Well, I do. How do I remember? Well the thing is I think they are becoming more frequent. Or maybe, as some are pushing me to believe, I am just more in tune to them. Either way, shit is happening all up and down my world. I am like one walking tumor moment, head to toe.

Let's start with sleeping, no big deal right? Wrong. I originally heard the tinnitus in my ears while in bed. I even tried to convince myself that it was some kind of a noise coming from my bedroom since I only ever heard it when I laid down in there. Well, it is still there and now it is accompanied by the occasional dizzy spell. How a person has dizzy spells while laying down, I have no idea. It's like I am in a perpetual drunken state with the spins... So, while I was sleeping, fighting myself for the covers, I SLAMMED my head into my bedside table. Boy, what a tumor moment!

I routinely walk into walls while coming down narrow hallways. TUMOR MOMENT! Walking in a straight line? That is a thing of the past. Today I even walked to school with my shoes on the wrong feet...tumor moment? I don't know if being generally confused about getting dressed was one of the symptoms, but I am going to roll with it.

I could sit here all day and list the moments that take my breath away, not because they are romantic and heartening, but because they are just so damn shocking, I can't believe it is my life. I would list them all, but there are too many. They've begun to blur together. They don't mean as much one by one and in aggregate they are proof of my need for a new normal. I am watching my body slowly revolt against me. I tell my eyes where to look but they betray me. I tell my feet where to go, but they betray me. I tell my pain to abate, but it betrays me. My mind, my body, they don't belong to me anymore. I am bearing witness to the deterioration of a strong body. I have to hold on to walk down the stairs. I have to be mindful of what I drink and eat because the nausea is always right below the surface. I have to be mindful of things that never should have to matter. Generally it is scary, but I laugh about it, even when there is no one looking, even when it is just me, laughing alone. The lonely clown.

So what else is going on? Well, generally I am a cranky bitch. Yup. I've pretty much lost my motivation. It is that time of the semester that things begin to wane anyway but for me, instead of late nights working through the desire to give up, I am just giving up. Not outwardly. I go to class. I read just enough to keep up but I've lost my honest motivation to engage the material. I was the person who read, looked up everything in the readings, then re-read. Now, we're lucky if I read at all. If I skim. I'm too tired. From what? I have no idea. I sleep when I don't have answers to avoid attacking the people around me who are trying to love me. I draw lines around myself, around my heart. It's too little too late, I think to myself. Where were you when I had nothing wrong with me? Why could you not emote then? Why is it that we leap to each other's aide in emergency? Is this even an emergency? Is it even trouble? It's fine, right? I'm fine. I think I'm fine.

I think I am fine and then I get up and fall backwards in my chair. People chuckle as a utter my new motto, "ACT CASUAL!" I don't feel that casual. My body is slowly disintegrating under me. I have abandoned my healthy diet and thinking, propelling myself forward with candy and sweets, thinking, on the off chance I die, I may as well enjoy what I have while I am here. It's really just pathetic. I know I'm not dying. But I don't have the strength to fight my body, my heart, my mind and worry about appeasing the people around me. I don't have the answers. I don't know why I am mad. I just am.

Though I am walking around harboring anger I do have fun most days. I am laughing my way through this process and honestly most days the laughter reaches my heart. It absorbs into me. It lifts me up. Makes me recognize my luck, my life and my never ending ability to just act casual.

I think I know why I am so all over the place... why? Oh you want to know? Ok then. Surgery is set. I go in December 20th to get mah brain chopped open. NBD. I got this. But I didn't realize having the date set would make it IMPOSSIBLE to think of anything else. I didn't realize that now my minutes are consumed with thinking of what it will feel like, what it will be like and how I will heal. It's just official now. Logistically, I'll finish my finals, hopefully well, and then I will send them off into the ethos. I'll head to Arizona shortly thereafter, preparing for 2 days of pre surgery poking and prodding, which will hopefully normalize this process so that my heart doesn't stop the day of surgery. I've already asked Jason to make sure no one kills me on accident and he has promised to kick their asses if they try, so we've got all of our bases pretty much covered.

I dunno, I think I need to work out more but I did so many jumping lunges I can barely feel my legs. Whoops. So I sleep. Tired or not, to avoid being alone with these incessant thoughts. It's not at all restful. It's actually quite the waste of productive time. But I have always done well with time pressure. So, logically, if I spend all day sleeping, and wake up just before things are due, I have set up ideal working circumstances. This is just really smart. I am just really smart.

I don't really know what to say. This is just a stream of consciousness post. There is not really any kind of moment of uplift or substantial lesson. Just a recognition that this is real. It's official. It's happening. And there is nothing to be said about it, it is what it is. In the meantime I will take advantage of what my brother tells me is the "Street Cred" that comes with having a brain tumor. I'm legit. Don't mess with me. I got street cred.

Peace and Love always - Samira

Pissed off-edness, tempered by hope

I thought, upon writing my last post, that the next post I wrote would be some kind of optimistic testament to the gestures I have taken to be in control of my destiny. I got a tattoo, I got a permanent representation of this journey on my body, as a reminder to let laughter flow endlessly from my heart and fearlessness into my heart. And while it has been a positive gesture it just served to cement the reality, the permanence of what I am going through. What was a gesture of retaking my body simply helped me know that I can't. I thought that this moment would be cathartic and while I am so happy that I did it, the results were not so clear cut as I had hoped. My response and my reaction were and are bound up in bigger discourses of control, health, family, guilt and representation. Being a scholar, I should have recognized that no analysis is so black and white. There are no absolute truths and we must operate in the grey spaces in between meanings we hope for and meaning we have.

I also thought this post would be about the process, the journey of transformation but it was overshadowed by several things. The largest of which being my anger. At who? I don't know. Just in general. I'm just pissed. Where did this anger come from? Well, it has arguably been bubbling right below the surface for some time now. Getting a diagnoses and trying to laugh through the pain has gotten me through a lot but it won't encompass the whole process of recognizing those things that "never could happen to me" happened to me. Ugh. Then Sunday I got news from my father that a man that I greatly looked up to had passed. My heart dropped. At 70 years old he had lived a good life but one that still had much potential for greatness. He was a man that inspired me to change the way I approached the world. He advocated for me and so many other people like me through his absolute devotion to Rotary's youth programs. And he is gone. It made me stop and think that I should have let him know, before he was gone how amazing he was and how grateful I was.

Not too long ago I went to a graduation party for another impressive and amazing rotarian who acted very much as a mentor to me in my life. At this event people walked up to a microphone and announced openly and with warm, loving arms, how much this AMAZING woman meant to them. When thanking people she said she was lucky to have so many wonderful things said "this side of heaven." She was blessed to feel so much love in this lifetime. It makes me wonder why we are that way. Why is it we honor people in death and not life? Why can we not embrace the people we love fully in life? A student recently met with me and I was inspired by his amazing attitude in the face of adversity. He has dealt with serious health issues of his father who, due to a tumor on the spinal cord, has become paralyzed. He said to me that he "can't be mad about what he can't control." And he was right. He also asked me to help him make sense of the way the media treats people in death. Having lost a friend in a violent way, he was shocked to see the media attention devoted to her in death when the media "really didn't care about her before," Her and so many like her, disenfranchised with no where to turn. No advocates fighting for people in life. And yet, he wasn't mad, he wasn't angry because it was not something in his control. I pushed him, to recognize the power of his voice. That he can change how we see people in life and in death. That we can and we must be our advocates in this life. IN THIS LIFE. And he pushed me to let go. To relinquish control.

I remember sitting next to my brother several years ago at a funeral of one of his friend's father, a family friend and neighbor. Through his gritted teeth and with tears in his eyes he implored me to live this life. He told me to make sure not to let anyone take it away from me. To fight for this life. It's all that we have, it is all we are sure of. We must live it to its fullest. For years I planned a tattoo of that phrase on my body (don't worry Mom and Dad - I'm not getting another one just yet;)). I felt I needed a reminder to live this life in a fulfilling way. I later realized my family and friends are those reminders.

I guess I have had some optimistic revelations this week after all but I have also been fighting an UPHILL battle. I worked my ass off to prepare a solid class for my students - as I do every week and only a handful of them were prepared and it triggered in me a desire to push them rather than implore them to like me. I abandoned my desire to be well liked and decided that they needed to fight for their knowledge the way I have. To take advantage of opportunities and make the most of every experience. I suddenly wanted them to know that they must show up for me to show up. They must be present or the whole process is a waste. This was after news of my loving friend and pet Teddy's sickness. Hepatocutaneous something something. It's not good. It's not fair. Teddy is a good dog, he shouldn't suffer. Teddy's prognosis came on top of a battle with the scheduling department of my own doctor's office. For all the praise of Dr. Spetzler, I have been less than impressed with his office's handling of my situation. The inability of the staff of a hospital/doctors office to show compassion to those who are grapling with difficult realities baffles me. Why work in an office that is supposed to save people and then strip them of their hope. To think I was excited to schedule my surgery. Now, I am just frustrated. I don't want to be that person that people think of and think, "wow she just can't catch a break." So I'm not going to be. I decided to snap out of it. I decided that despite all of this SHIT ( I mean let's just call it what it is, it's SHIT) I am lucky.

My mom often tells me something in Persian, "Nashokri nakon." Translation? Don't be ungrateful. So here are the reasons I am lucky. My FAMILY - a mom who fights for my hope, even when I can't find it anymore. A dad that patiently listens when all I can do is yell about everything and nothing because the pain in my head is too loud. A sister than calls and worries about me even when there is nothing to worry about. Another sister that tempers my anger with her patience, her cadence drawing me back into reality. A brother who makes me laugh, makes things casual, but guards me with everything he has. A brother in law who is patient, willing to listen, ready to help. A nephew who reminds me that sometimes life is just as simple as playing with our dinosaurs. A neice who in the words "DA DA DA DA DA DA" makes my day. And a boyfriend, who just lets me be me, endlessly flawed as I am, accepting me for my humanity, praising me for learning to stand on my own two feet. I'm grateful for them. I am grateful for every friend that let's me vent, that checks in, that bothers to care. For the friend that is patient when I spontaneously cry (in a crowded restaurant - mind you!), patient in holding my hand as a shift my reality, my framework of how I see myself. I am grateful for the texts that come through all the time asking me how it all went, how it could go and how it is actually going. I am so grateful for opportunity. I am grateful for the chance to get up everyday and learn, to better myself and the world around me. I am so grateful for the roof over my head, the endless physical manifestations of the immaterial blessings. I don't really know if I believe in God but I believe in luck, fate, destiny. Why I was destined to be on this path? I have no idea? But I won't let it strip me of what I have. Of who I am. If I change from this it will be for the better.

That doesn't mean though, that I won't have moments of anger, of ferocity, of fear and of confusion. But I am trying, to let the laughter flow and bravery in. To be brave. That is my endgame. In the meantime, I'm a bit pissed off. Wishing I could just go back in time, to my life before, but I am tempering that with the knowledge that this too shall pass and that I will come out on the other side and at the end of the day to see myself as anything but lucky would be just plain lame.

It's confusing right? All this hope entwined in all this anger, confusion and an endless stream of jokes (I will laugh my way through every day - no matter my mood). It won't get any less confusing - I don't think it will at least, but I am doing my best at being alright.

Peace and love -

The power of family - where hope resides

Very few people understand my relationship with my family, and very few people have made it to the category of family for me that are outside of my blood relatives, but for those of you that have, I hope that you have begun to understand the power of family, especially when it is like mine.

When I wake up in the morning I get dressed, go to work and wait, I wait for the most convenient time to call a) my parents - I don't want to disturb them too early b) My oldest sister - she has kids to wrangle every morning so I give her time to get situated c)my big bro - his job being so demanding I try not to call during lunch so he actually takes a break and instead I opt to interrupt him in the middle of the afternoon or catch him on his walk home d) my next sister - her challenging schedule as a doctor and the two hour time difference makes it hard to catch her! and e) my best friends - including the man I love, and a handful of select people that have left such stagerring footprints on my heart that not to call them family would be doing them a disservice. These are the people I love like family, argue with like family, and go to when I need or can give support.

It's nuts, right? I spend most of my day connecting, to people, to these people. My inner circle. People I meet and often those special members of my family of choice tell me that they "never talk to their parents" or they call their siblings on holidays. Their inflection often indicates that what I am doing is somehow crazy. I spend too much time. I spend too much energy. I tell those critics that if the worst thing you can say about my family is that we care too much then we are pretty lucky. Don't get me wrong, we fight like any other family. We annoy each other, we push each others buttons. But at the end of the day we are there, for one another. We keep each other on track, don't let each other screw up. We are accountable to ourselves but more importantly to the family.

At this point in my life and moving forward into the future, past the days where Herbert occupies my energy, they are the biggest blessing. My family, given and of choice. The people I care about innately and fully. Whether it is the complete devotion of a Dad to making his daughter better or a Mom whose beautiful spirit fills a home with hope and joy to the friends and siblings that call and sit on the phone with you quietly, when there are just no words. These are the people that make life what it is.

My life has been very confusing of late but one thing I have always known and always will know is that I am so blessed (if there is such a thing as being blessed) to have the people in my life I do. That somehow the universe gave me a family as amazing as this? Can it be real? I can't and won't and don't feel sorry for myself when I have them. When they are around. They are my cure. Suck it Herbert, you are just jealous!

I guess for me they are a reminder to all of us to love a bit more fully. To recognize what we have before we can't recognize it anymore. To be accountable to the people around us. To care. So many people have shown me so much love. Not just since we found Herbert, but always. I will pay it forward. And back. I will pay it all around. No brain tumor can stop me from who I am - my family taught me that.

Peace and love -

Updates - all things Herbert, Samira and life in general

I hadn't realized how overwhelming my trip to Arizona had been until I came back and began to process it. The reality of a diagnoses and what that means to an individual are hard things to understand. The reality of being differently abled than what you are accustomed to is scary, even if the consequences of a diagnoses are minimized by the notion that it could be worse.

I went to Arizona with my Dad and Jason on Thursday to learn more about the famous Dr. Spetzler of the Barrow Neurological Center. Having heard so much about him I had anticipated the experience to unfold in a certain way. I had a vision of him in my mind, an expectation set up. I am not sure if the expectation was met but I do know that he will be my brain surgeon. You know when you hope if you say something enough times it will stop being scary? It doesn't work. I have tried to wrap my head around the notion of brain surgeon and brain surgery so many times. I've tried to normalize it. It's not easy. It doesn't ever feel normal to say, "Hey you! Yea you, guy in the weird blue surgical bonnet... Come over here! Talk to me for a minute or two so I can decide if I trust you enough to let you cross all of my personal boundaries, cut open my skull and muck around in my brain! Nice white coat by the way!" And before you can even finish the sentence they are out the door. On to the next set of scans. Dehumanized masses waiting for cures, for treatments, for salvation. With 29 doctors operating out of the Barrow Center, the waiting room was just that. Huddled masses, the sick, obviously trying to conceal their nervousness or on the other side of the spectrum they sat, so adapted to "sickness" that their presence in a doctor's waiting room was commonplace. Their supporters, helping with paper work, standing at attention when their names were called, holding hands, patting backs, helping their poor, sick counterparts navigate this system. It was all too much. The wheelchairs, the canes, the eye patches, the facial lags. How is this my life? How is this where I am? I mean, I just have headaches, there is just ringing in my ears. This place with these sick people, I can't possibly belong here. Right? Or do I have to come to terms with the fact that I am only okay with notions of disability because I am able? What will happen if and when I am not? So step one was the waiting room and getting through that, especially since we were 2 hours early with no where to go, and it felt like a marathon.

Meeting with the doctor was strange, brief and somewhat mechanized. I had to meet the man I was going to allow to cut my head open. I couldn't go into this without some insight into his humanity, his way of knowing, I had to use my intuition to know what was right. His fellow came in first, and with a somewhat patronizing tone discussed my symptoms with me. I gave him my ever growing list of symptoms. Instead of seeing me as a woman in tune with my body he dismissed even the most relevant symptoms as potentially caused by anything. To cause me to feel stupid and a bit infuriated that my hearing loss and vestibular disfunction, though potentially caused by anything, were not really being attributed to the GIANT TUMOR growing on those nerves. While I recognize the desire of medical professionals not to want to make promises, the notion that the symptoms that led me to discover Herbert could be anything and that they can't tell me what surgery would do for them was just downright exhausting. And upsetting. I know I am not a doctor, but I am also not an idiot and I know my body. I know it well. I listen to it. Despite the condescending nature of the fellow, he seemed smart and probably quite capable. Dr. Spetzler was different. Very even keel, very confident. When asked if he was the best at what he does he mumbled a quiet yes. Yes. He is the best. Why would I walk away from that? His affect was good. He was decisive, he was clear. He didn't seem in the least concerned. Though, when he identified what is already signs of facial weakness and I jumped up exasperated to look in the mirror on the wall, he couldn't help but crack a smile. Oddly, the doctor mockingly laughing at my exasperation at potential facial weakness made me feel good. I was pissed when I saw what he saw though.

There are some adjustments to my overall expectations. I had hoped that the best guy in the world would say, "Hey Samira, seeing how awesome you are, we have an awesome result for you. We will take Herbert and massacre him, but don't worry we will save your face and your hearing. You will be tumor free and go on to live your life on the path you always imagined. Go on! Return to your previous life devoted to the plight of others. No more of this confusion about what it all means! We will fix it!" But, um, he didn't say that. He did give me hope to keep my hearing on my right side for longer than any other doctor had, and without the risk of radiating my brain. How you ask? Well he wants to leave Herbert in there. At least partially. He wants to take out the really scary parts of Herbert, what I am assuming is his fat ass, and leave the rest. This involves leaving the part on my hearing nerves and also involves the potential for the continuing presence of my symptoms. BUT, I will get to hear and smile and maybe Herbert will realize that once he gets his ass removed he won't want to grow it back. It's like free lipo. Who wouldn't want that? I can tell you right now, Herbert is a shallow son of a bitch. That being said, I was glad to FINALLY have a doctor talk to me about hearing preservation. Dr. Spetzler was the only one to say that, even the doctors here that advocate debulking (aka ass-ectomy - the removal of a tumor ass) had told me to give up on hearing. Which was generally a bummer. Dr. Spetzler was different. He knew more. He seemed to have such a solid grasp and his fellow spit out some very promising statistics. With that in mind, I am hopeful about surgery but am also staying realistic. I am tempering my expectations with outcomes across populations. I am treating this whole thing like a science project. One that I am seeking to win a blue ribbon with.

So life goes on as normal. I am almost fully nocturnal now, I am perpetually naseous, so Zofran is my new BFF. I am contemplating a tattoo (to the dismay and confusion of my parents) that is another attempt to regain control of MY life, MY body, and MY identity as a woman living with a diagnoses. Given that surgery won't eradicate my tumor, I have to live with Herbert for longer than I had hoped in some form or another. I have to be patient with him, my little uninvited guest. So I work, I workout and I try to maintain a baseline level of normal. I've done an okay job at it too. I think.... I hope, anyway.

I am also contemplating taking this blog public. While I originally started it to inform my loved ones, through joining the Acoustic Neuroma Associations support group and talking with other patients I have learned so much about myself, my diagnoses and how to cope. So maybe I can pay it forward with my story, in all of its gritty detail. Just a thought.

Peace and Love

Samira