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

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 -

Rubbing it in

So you all know by now that it has been about a month since I found out about my new normal, my uninvited guest, my ole pal Herbert. In the last month I've gone through a variety of emotional states, probably enough to last a lifetime and I feel like it may be helpful to put some of them here. Perhaps to get them off my chest, perhaps because they might be relateable. Perhaps because I am procrastinating.

I was never the kid to go out and party. I always chalked it up to self-respect, high personal standards or a lack of interest. Really it was always an intense fear of getting in trouble. Things already seem to go wrong at every turn, I am always messing up, then to add alcohol? The few times I did I felt kind of blah.. Anyway, this brush with Herbert (asshole!) has made me wonder if I somehow missed out. This lack of reckless behavior, has it gotten me ahead? Why not do drugs if your body is going to betray you at every turn anyway? But then, suddenly I realized that I haven't missed anything. I am smart, I am committed, I am doing things right. I think. I am though, right?

Of course there was this awful moment, of why do all this smart eating, smart working out, smart learning, it seemed like a waste of time. How can I be the person to have walked a straight line and have this happen to me. Most of my "why me" moments have passed but I still fall into that space every once in a while. Self doubt creeps in, just as it does as every doctor asks me what my treatment choice is. Do I follow my gut or do I listen to what they say? Do I hurry up and treat this or do I wait? Do I cut and run because it's hard or do I stick it out? How I can really run from my own brain, I am not sure - but the heart can hide from anything.

When I am not in hiding, I am researching. Desperately, hopelessly looking for the perfect answer. I am trying to find the person who says, I did this, I had no side effects, and life is hunky dory. Unfortunately it looks like life is not hunky dory. It is okay, it is adjustable, but there is no easy path on this portion of my life journey. I haven't found the perfection I am looking for. The doctors tell me to temper my expectations, to be prepared for the worst and hope for the best. I've always lived like that, I've always been a worst case scenario thinker. I'm the one always looking for the quick escape in case of a fire. I'm good at bad. I am calm in crisis. I am excellent at grief. What a skill set, eh? I haven't found my right answer and when I am feeling dizzy (like today) and my whole head is tingling the way my feet do when they fall asleep (like today) and the pressure in my ears is so heavy I think my ear might actually pop off (like today) I recognize that I have to adjust. I have to say that this is normal and this is ok. I have to say that I can do this. I have to debate my own demons and I have to win. I have to throw this pity party and then get over it. While I haven't found any answers that meet my incredibly type A standards, I have found new friends, support in places I would have never expected and been given strength by the people I never expected it from. I have seen generosity and I have seen withdrawal, and I have seen that lots of you guys love me even if you are not willing to say it and that means something.

That being said there have been things that I feel like just rub it in. In class last week we read about neurological receptors and understanding of visuals. We looked at a multitude of diagrams of the brain - RUDE. Then in another class we read about biological determinism, health science - why are women more prone to certain diseases? Hell, I got no answers but I did find that women are twice as likely to have acoustic neuromas. Thanks gender. The worst of it? Apple. Yes, Apple, and their stupid new iPhone, with its stupid new ergonomic headphones that fit into all the stupid ears that can hear all that stupid content. (Whatever, I want that phone but not for the stupid headphones.) Being that I LOVE TV, it is almost always on in the background, my companion that doesn't talk back and it it does I can change what they are saying with the click of the button. But lately, no matter what I am watching, I feel like I am being attacked by functional ears. Weird, curly, freaky, cartiledgy ears. Like this one:

and this one:

so that they can fit this:

Everytime I see this commercial I think DAMMIT I hate you weird looking ears! But then my left ear is like "Hey! I can still hear over here, I want those headphones." And I just want my inner monologue to SHUT UP! Suck it left ear - it's not about you right now.

While I seem to think that the world and the universe is just rubbing everything in I recognize that much of this is all on me. The world is what we make of it after all. Some days I am better than others. The days where I am poring over doctor reports on surgery outcomes versus radiation outcomes can get me down. Other days I get a call from the doctor who is allegedly the best in the world and I count that as a victory. (YAY! Phoenix here I come!) Feeling genuinely happy for the first time in a long time. Other days I just try to remember myself, who I am, what I stand for and I hold on to it. I am lucky because I have people that love me that help me remember who I am. My family, my friends, my students. When I am with Jason the whole world melts away and it is just us. I can forget my problems and learn and grow with him like we've always done. I am so grateful for those moments.

Then there are nights like last night. Where fear creeps in and I am afraid to close my eyes. Where images of ears and deafness and loneliness creep in, where reality sets in, life sets in. And not the kind of loneliness any one can cure, it's a loneliness that seeks isolation. It's not just life with Herbert, but a manifestation of a life with no control, a life without givens. A life with no absolutes. I don't want to be around anyone in these moments so I watch shows and familiar movies. I am afraid to be alone with my own thoughts. I am afraid to succumb to what my mind and body think or know intuitively, so I stay awake. It is in these moments that I trace the word laugh with my fingers. I cannot tell jokes, I can not be the jester in my own life when I am all alone late at night so I laugh at mindless comedy. I am too tired to work by that time of night so I just watch, laugh and force my eyes open. At some point I lose this game and my eyes close tight and morning interrupts my dreams. Then I wake up, struggle through the day and give up my caffeine in moderation motto and suck down espresso like it is my job. In the light of day the fears the night brings seem ridiculous and Apple rubbing in my pain seems like such a joke, but in the night, the reality is there and I have to confront myself, on all fronts. I have to try to reconcile the girl who wants that new phone so bad with the one that doesn't understand anything around her at all.

Peace and love - Samira

Finding out you've been living with Herbert all along...

About three weeks ago I got some upsetting news. Well, actually I discovered some upsetting news with the help of Apple's facetime technology, a sister who is a pediatric geneticist genius, and an MRI film...

Let's step back a few years, a little bit less than a decade.

I was sitting in Mr. Cronin's french class and I felt a blinding pain on the right side of my head. I could barely keep my eyes open, I left class, went to the bathroom, splashed water on my face and powered through the pain. I didn't think too much of it until the next day, sitting in Mr. Cronin's french class it happened again. I thought to myself, this class must somehow be offensive to my subconscious because my body is reacting to it in quite a negative way. But then I thought, no, this class is great, I love speaking French. La tour eiffel! Steak frites! le cafe! Then it started happening in other classes, so finally we went to the doctor, they ordered an MRI and I remember walking up and down the crowded halls of my high school expecting the worst. A brain tumor... The MRI showed, well it showed...it showed, NOTHING. No tumor. Thank goodness! Oh but wait, my head still hurts! "Do you see halos in front of your eyes?" the doctors asked. "No," I replied. "Does the light bother you?" they asked. "No more than the light bothers anyone else," I replied. "Are you nauseous?" they responded? "No, my head hurts!" I emphatically replied. Well, given that I had no clear signs of migraines, I was diagnosed with migraines and went on a five year course of torturous treatment. Harumph. Slowly I began to naturally adapt to the pain. I made life changes, decreased my stress, learned to meditate. I became an advocate for my health and decided I didn't want to be on pills for the rest of my life and weened myself off of the hordes of drugs I had been recklessly given.

Fast forward 8 years of no depth perception, clumsy jokes, and intermittent head aches and I wake up dizzy one morning. Oh crap I think, it is the dawn of my second year of PhD school and I have jitters. Such bad jitters that my world is spinning. It'll go away once I get to class. Oh wait, nope, no it won't. It's just dehydration, it will go away with a solid nap and a large glass of high quality H20. Wait a second, nope. So to the doctor I went. I am pretty sure the loved ones around me thought my inner hypochondriac had kicked in, but in my heart I knew something was wrong.

The doctor did a hearing test - I couldn't help but think it was a waste of time. I have great hearing I thought, minus that incessant swooshing sound I have had in my ear for the last 8 or 9 months... the doctors had said it was water in my ear, or wax build up or an ear infection that was lingering. That is so not connected to this. The tester said her words and with my back to her I repeated them with absolute confidence... Her: "catch" Me: "caT" but not just any "caT," cat with such enthusiasm that I lingered on the T, making sure the tester knew that I knew that she knew I had no hearing problems. Her: "bath" Me: "baT" Her: "Blorp" Me: "Blorp?" Her: "Let's try that one again she says, blorgn Me: "Blorgn!" I got it that time for sure!

Wait a tick, I am pretty sure blorp and blorgn are not words, what a weirdo this tester is...wait, am I not hearing this correctly?

Turns out I had a bit of hearing loss. Nothing crazy, just enough to make locating noise difficult. They put me on steroids, if this is some kind of infection, they assured me the steroids would do the trick. But, just in case let's get me scheduled for that MRI. Don't panic, I thought, how important are the structures of the inner ear? I hear of Yogi's getting their inner ears all messed up all the time from prolonged hand stands. That must me what happened to me. I am a certified Yoga Sculpt teacher. Except, I don't know how to do a handstand! "Shut up, inner logic!" I screamed at myself.

MRI day finally comes and it's actually quite fun. My parents come visit, we go out to lunch and we even go shopping. A small part of me thinks we should do this more often. Well, maybe not all of it, maybe just the lunch and shopping bits.

So there I am, on facetime with my sister, the doctor, and I am PANICKING! "What the heck is that?" I scream. Calmly she says, "those are your eyeballs." How does she know that I don't have two eyeball shaped tumors sticking out of the front of my skull? I am not sure but she sounds confident. I decide to move on. "WHAT IS THAT? That cannot be normal!" She laughs, "that is your spinal cord!" I wonder if it is supposed to look like Darth Vader but again the timber of her tone has not changed so I decide to trust her. I also trust her that human ears are supposed to look awfully elfen in MRIs and that everyone has blood vessels. I even believe her that my brainstem is supposed to look like broccoli. Then I see it, a white mass. Looks like a golf ball, maybe attached to a smaller mishapen golf ball. Uh oh.

"WHAT IS THAT? THAT IS NOT NORMAL! EVEN I AM NOT THAT STUPID TO THINK THAT THIS IS WHAT MY BRAIN SHOULD LOOK LIKE. COME ON WHAT IS IT?!?!?!?!"

"Calm down," my sister says,"but the smile is gone from her lips, I can tell just from her voice.

"WHAT IS IT?! GET IT THE F*** OUT OF MY HEAD!"

"We just want both sides to look the same," her calm is not easing my rising anxiety,"all we know is that there is an irregularity, but there is no reason to be worried. Do I look worried she asked?"

I don't think she looked worried but really all I can see at this point is Darth Vader, invading my brain with his little irregularity, ugh how rude!

I don't want this in my head, in fact I am screaming that. I don't want it in my head. Come on, get it out! My sister assures me that if "Lance Armstrong's balls can handle this, so can your brain."

Dammit. I wish it was in my balls. And, no, I have no balls, I am fully female, so an invisible tumor in my invisible balls would be much preferable. JEEZ!

Long story short, I have a tumor, which I have coined Herbert. I figure even uninvited guests deserve names. Herbert being the ugliest name I could think of. (Sorry if that is your Grandpa's name!) I mean, we have been hanging out for at least a decade. Wait, you are confused too! How did I know that Herbert has been with me so long? Well, remember that lovely MRI from years ago? Yea the migraines. Turns out Herbert was hiding in there all along and was "plainly visible" according to the doctor who looked at it recently. He was just a little tike then, 4 mm. He's grown, he saw a vacant lot on my vestibular and facial nerves and decided to move in. (We're not sure if it is a tumor of the vesitibular and hearing nerve or the facial nerve but it is most likely what is called an acoustic neuroma or vestibular schwannoma - no, that is not the same as chicken scwarma - I asked...) He recently even expanded to the lot adjacent to my brainstem. I hope it appraises well because location is everything in this market.

What I have is not cancer (YAY! sorry cancer, I just don't want you!) and it won't kill me (I mean no more than any other thing I face on a daily basis is likely to) but I have to deal with it. And, I have to deal with the anger that comes with it. I have to face potential loss of hearing (eh? what did you say? heh?) perhaps the potential of facial paralysis. Ugh there go both my Broadway career and my modelling career. Whatever, you are too short to be a model. Not me.

I suppose I am lucky, and some days I feel like I am. I am continuously grateful for my family, my friends and my handsome boyfriend. Then there are the days where my sense of humor fades and I etch the word laugh onto my hand. A reluctant reminder that my strength is from the inside. I think I have dealt with worse loss than this in my life and I strive every day to find my new normal. Some days I am frustrated. I slip in a balance pose in yoga or feel faint lifting weights. I think to myself, I can do this! Some days I feel betrayed by my body. Other days I feel betrayed by my heart for feeling betrayed by my body. Some days I think, what a waste all of this healthy eating has been and I think about donuts. Some days I think I have a sweet excuse to slack on my homework, then I remember who I am. I am not the guy that makes excuses. I am the fierce woman who fights back. I've begun to reframe expectations for my year and my life in new ways. As my sister said, I should mourn the expectations I had that I would wake up with 2 working ears. A reasonable expectation by all accounts and one that I should try to live without. That seems doable.

The great news is that this is treatable, and most likely successfully. So I tell jokes. I try not to get bogged down in the disheartening reality that I cannot control everything. I try not to be mad (but really I am) and I try not to misdirect my anger at any of you (sorry if I fail). My family has seen me in the worst of my moments and they let me scream and yell. Sometimes they respond with the reluctant non-commital, "Well..." Well what? am I right or am I right? Apparently not even Herbert can get people to affirm your views all the time. Other times they get more passionately angry than I, carrying the torch on my behalf. Wishing this hardship on themselves, something I would NEVER allow. And sometimes, they tell me to shut up, that no one will feel sorry for me because I will be ok; and, it is in those moments, right as I am about to call them a bunch of meanies, they squeeze my hand, pat me on the shoulder, or blink their tears away. It is then I feel like I don't even remember my old, uninvited guest, Herbert. Sometimes they even laugh at my hugely inappropriate jokes long enough to let the pity out of their eyes and true joy in.

This is my journey. Well, our journey, Herbert and I. And don't you dare call him Herby, that is way too cute. This is also the journey of a woman who sought to change the world of women who have been victimized in the worst ways by humanity. I still plan on doing that. I still plan on carrying the torch of women around the world who are voiceless as I know all of you, my beloved friends and family are carrying the torch for me, being my cheerleaders. Even when I can't hear your cheers.

Follow my blog for all things Herbert, Samira and life. From the trials of getting a PhD and trying to hold tight to my cause for women and the world, and the small inconvenience of a looming brain surgery. I invite you to walk along side me. Just don't walk on my right side because Herbert won't be able to see past you.

Peace and love --