Livingwithherbert.com

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Peace and Love - Samira

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

blurg

I am totally over this brain tumor. TOTALLY. OVER. IT. Nuff said

Head above water

So recently things have just been plain hard. My spirits were relatively low and I had some pretty rough moments. Last week I flew to Poughkeepsie, NY for a conference. Before going there I had come down with a pretty nasty cold and couldn't really feel my face because my sinuses wanted to explode. Between the cold, stress of giving my first ever exam to my own class and being totally unprepared for life, I had a lot of up and down moments. I was emotional and in this stage of reevaluating everything in my life. I would stare off to space and think, I never imagined my life, at this stage to look like this. And it wasn't that I am somehow disappointed. I wasn't and I'm not. Rather I was just confused. How could I know so much and yet so little? How is it that I just can't understand? I was grappling with issues of love and commitment, health and sacrifice, reality and expectations, faith and the world. What did I even believe in anymore? I was and really still am confused.

I kept looking down at my hand where I had previously written the word "laugh" and it has washed away. Outwardly I have done a great job keeping up with the laughing and the smiling and the jokes but the veneer is beginning to fade. I just want my head to stop hurting. My new word is "Fearless" and it is on the necklace I have had around my neck since before I knew all I had to be fearless in the face of. I look down at it often, I hold it between my thumb and forefinger. I hope that I can channel that idea. I've been through much worse than this. I can do this. I know I can. But I am angry a lot and all of the other problems in my life, from minor to major now seem magnified. They somehow seem urgent to me. I have a bucket list to get to while I am still somewhat able. So I console myself with the notion that at least if I am all janky and messed up, looking like Quasimodo later, I can get a service dog to cart my lopsided ass around town. That's a good silver lining right?

I think part of the problem is that I have no control. The things I thought I knew are not universal truths, they are constructions. I don't KNOW anything. And the stuff that hurts most (physically that is) I can't do anything about. I can't get to the other side of my skull and pull Herbert out. He isn't a scab I can pick at or anything I can see but I can sure as hell feel him. I want him gone. I want my life back. I want my truth back. I have to stop sometimes and realize that even the non physical stuff, the life learning things, I really don't control those either... what the heck can I control?

I was sitting on the plane coming home from what was largely a disappointing conference and the stress of being away, not having all my right foods to eat, my painful cold, and sheer exhaustion. I leaned my head back in the chair and tried to close my eyes (I had wanted to read but the plane was enforcing sleep by turning EVERY light off). I finally lulled myself into some semblance of a sleep. I woke suddenly, awaken by my own crying. I felt like I was being attacked, every fiber, ever nerve, every last bit of the right side of my body was in violent pain. This can't be real, I thought. So I just closed my eyes again. Had I not been aware of Herbert and his desire to attack me I would have thought something very serious was happening. A fleeting thought passed through my mind, that maybe I should ground the plane, I didn't know if I could withstand this. But what would they do? No one can fix this. I buried my head in my hands and hoped the ride would end soon. And it did. Soon enough I was recovering and running across a new airport. The Detroit airport, which has a strange underground funhouse hallway with lights and creepy music, that is really not conducive to my condition... I finally begin to feel the pain alleviate and then my flight is called, I climb aboard, leaned back in my chair and there it was. It was back. Dammit! Excruciating doesn't even describe it. My vision was blurred, my hands were trembling, my whole body was tingling. I was definitely afraid. I had to be fearless. I held my head in my hands and realized the positioning of my head impacted the pain. It was like with the increased pressure of being sick and being on a plane, the position of my head either really pissed Herbert off or made it so he could climb into his freshly cleaned sheets and take a nap, and get off my back for a while. So I stayed, hunched forward in my chair, the closest to fetal position you can get on a plane, and waited it out. It was like I was staring Herbert in the face and saying, "You give up, because I won't! Stand down! Stand down!" Eventually, he did. I win this one, asshole.

I have had to give in to my utter mediocrity. I am not able to do what I was before, not because I can't physically, but because navigating these emotional places takes a lot of time. It is exhausting. It is frustrating and it manifests itself in EVERYTHING. Even my bad hair days are a time of emotional devastation. Take for example this:

I mean who wouldn't sink into a deep depression. I look in the mirror and I see this:

and it took so much combing and teasing to get to something as simple as this:

So what does my BAD HAIR DAY (or BAD HAIR YEAR 2012) have to do with my emotional state? Well, when the best you can do is just keep your head above water and your legs are tired from treading so long, and your head aches and your arms can't splash anymore, every last thing counts. Every last moment matters. Every little challenge seems so big and yet so small and so you struggle to say, why can I not even handle this? This hairdo? Why does it matter? It shouldn't, but it does. It's that last little bit of weight that tries to drag you down and you can't let it. So you look to your friends, as John Mayer says "Then the circle of your friends Will defend the silver lining." And they do, whether it is Jason telling me endless jokes, making me smile all day long and proving his love in the funniest of ways, or my best friends text messages or funny ims, or little surprises on my doorstep. You see that silver lining and it pushes you back up. It's like life's flotation device. And it helps you keep your head above water. Way, way above water.

Tomorrow I go to AZ to meet with Dr. Spetzler. I am pretty excited and am hopeful he can fit me in for surgery during the holidays. Friday I will go back to Dr. Elliot to hear from the results of his gamma conference and see what the consensus of doctors said about my case, I have been putting this appointment off for a while. Then it will be serious decision time.

I hum this to myself sometimes to remind me that despite it all, we are here to share joy with each other and that is what I will do for you, if you keep helping me see how. "Pain throws your heart to the ground Love turns the whole thing around No, it won't all go the way it should But I know the heart of life is good." Thanks John Mayer, despite your weird racist rant and your strange public love life, your words give me comfort.

Peace and love - Samira

Doing anything but this, the diary of a diseased woman

I have a ton of work to be doing. I mean, a ton. Like if it was not inside this computer it would probably weigh 2000 pounds. See, literally, a ton. And as I started writing this last night I was not doing any of it. I wasn't even doing this, I had stopped blogging 2 sentences in. I don't smell a Pulitzer anytime in my future... I wanted to be doing anything but focusing. If it was anything other than sitting in my melancholy, I wasn't interested. Adding insult to injury there was nothing on TV. Since when did network television turn into 3 hour blocks of the same inane competition show? Why can we not put together quality programming anymore? What about story lines and character arcs? Give me someone to be invested in for longer than a 2 month competition in which nameless faces are replaced with more nameless faces. Dammit Monday night, you are a TV nightmare. I had already worked out, there was nothing on TV, reading, working or being productive were all out of the question so I had to find another way to waste time.

So I sat, with my thoughts, and sang to myself. Ever since I was a kid I have liked singing. Whenever I am sad music makes me feel better. It makes me hopeful or even in the way it magnifies my emotions it helps me heal. Since Herbert reared his big ugly head I have had a tough relationship with music, it's been on again off again. Having so many emotions bubbling so close to the surface music just brought it out. How can I stifle reality if random singers on the radio seem to be speaking directly to me? How can I avoid the progression of what I have to deal with when the melodies are pushing me forward? It had become problematic but in my infinite paranoia I had decided that I have to sing before I lose the ability. I can already recognize an inability to hit a tone with my marginally diminished hearing. I can only imagine what it will be like when I am carting around my "dead ear" as the doctors called it. I prefer the term decorative ear. It's not totally dead to me, it's not like it will start decomposing when it stops hearing. It still will hold my earrings up. Plus I love a good pair of earrings. So I sang, to myself. At times I thought, this is ridiculous, but then I thought, this is therapeutic. It wasn't like I sang while I did other things, I only sang. I just belted out. Most likely to the dismay of my neighbors. I don't know if it made me feel better but it did make me see how I felt to begin with.

You see this weekend was different for me. It was not my regular "fun" weekend of studying and snuggling up next to a good book (or mediocre book, or text book, mostly just required reading books), I actually had to socialize. Which was great, I saw some of my favorite people and some I had lost touch with. I was there for other people, one of my favorite things, and I spent the weekend on my toes, presenting myself as the loving person I am. The person who up until the weekend was consumed in a selfish general hatred of all things healthy. I gave up my rage and replaced it with outward flowing happiness. And then, the weekend was over. Having come out of the safe refuge of my house and my homework I had started to let people back in. Not that the people I love most were ever out, all of you will never waver from the true center of my heart as you are all my world. But I had been isolating myself. And then I realized why isolation is such good protection, because when you turn around and go home you return to your "me" space. Which is great but being with people only serves to magnify that you come home alone. I worked hard to combat this feeling. I am overall, even with Herbert a very happy person, but I have my moments and last night was certainly one of them. I started calling all my "regulars" no one was picking up and then I just stopped trying because really I had nothing to say. What do you say? The immense love I was shown over the weekend, the consideration and compassion from a friend dealing with his own deep and difficult life moments, the love from a friend embarking on a new life's journey, the hugs from old friends, those had sunk me into a deep funk? No way, can't say that. I ended up silently sitting on the phone with Jason. Just sitting. It was better than sitting alone. Nothing made sense. Nothing. I mean why was The Voice on all night. Why did I have nothing to watch? Why did I suddenly think my deafness would take away my joys in life? Why was I so sad?

Blarg. Maybe it was just that I had a cold. Maybe it was just that I was overwhelmed with love and all I could do was collapse under the beauty of it all. I am not sure. I woke up today early, and got dressed up in another coveted outfit. I can't leave these outfits for janky faced Samira, they have to make their appearances now. While I can still use my face as an accessory and while my ears can still hear all the compliments I am sure to get ;) Jokes aside though, one part of the sadness I have been meant to face in this process of understanding my new normal is reframing myself as someone with a disease.

When you hear people talk about disease it can conjure up a lot of different images. For me I think of germs and outbreaks, people with SARS in their little masks. I don't think of me. Normal old me. It had stuck in my head that a few doctors had referred to Herbert as a disease. I remember brushing it off, thinking no, he's not a disease. I'm not diseased. I feel fine a lot of the time and even when I don't, no one would ever know. Diseases are obvious, they are gross, they are what happen to other people. I, I am not diseased. So in an attempt to prove this to myself I googled it.

Define: Disease

Here is what I got back:

Aw crap, I think I have a disease. I had to sit with the negative connotation of this. "signs or symptoms or that affects a specific location and is not simply a direct result of physical injury" I had no physical injury and I am affected. Oh man. Then I thought, okay, well it doesn't have to be such a bad thing. Then I had to stop myself from becoming that cliche where "my disease saved my life." My life isn't in need of saving. I don't need to appreciate the people around me better. I already appreciate them just fine. I don't need to be more giving, I give a lot. There is nothing left to give. I don't need a disease to tell me what is important. I know that. Life told me that. Love told me that. My friends and family have always kept me accountable to them, to love, to life and to learning. You don't need to be a victim to learn how to love. You just don't. But that doesn't mean I'm any less diseased. Ugh, at least you can't catch it. At least in my moments of darkness I can say, "hey, it's not my fault, it is just my disease." I'm willing to bet that would shut up any critics real fast.

So last night I was a singing, diseased, procrastinating fool. And today? I snapped out of it. I have focused on school and class already today. I am working hard and on top of my game. I think I needed last night though, to help me understand. To allow me to sit with the state of my life and understand where it all can go. I needed to learn to live in the now, even if the now isn't what I thought it would be when I spent my whole life looking forward to my tomorrows.

Tumor moments

So I've always had some tendencies to you know, be a bit flighty. Lose my keys, get easily distracted, lose my car, heck I'd lose my hair if it wasn't attached to my head! Now I feel I have an excuse.

The other day I left my iPod in my car before I was about to teach a yoga sculpt donation class. (More shameless self promotion- come take yoga sculpt with me every Monday at the DSCC at CU- bring can foods as weights and then we'll donate them!) I ran down to the car knowing I had just a few minutes to get my iPod. I ran into the garage at the entrance I had gone in and ran down the stairs. I walked down the aisle and there it should be! Oh crap! I had no idea where it was. I went down another floor to a largely deserted floor. Welp it's not here! I was frantically pushing the beeper. I could hear it but could not figure out where it was! "Good thing I have a tumor,"I thought. That would be super embarrassing otherwise.

There have been several of these moments in the last few weeks. When I use my trusty "Herbert made me do it!" excuse, people have a tendency to throw their smart asses in my face. "Well, what was your problem before?!" they ask with a smile playing on their lips. "Um, well," I say, "it was Herbert!" Might I remind everyone in my tiny blogosphere that Herbert has been living in my head long enough for him to have squatters rights. He has set up shop and has indefinite plans. It's not his vacation home, he moved in thinking that my brain and inner ear areas were perfect places to grow old. Well a ten year old in tumor years (like dog years) makes you elderly because it is almost his time to die.

I'll most likely be bringing you many of these tumor moments. It'll look like this: I fell down! Classic tumor moment! Ha! Or this: oh no, I walked into a wall and spilled coffee all over myself while walking, tumor moment! Will all of these things actually be the fault of tumor? Probably not. Is it possible I am just a jackass? Why, yes, it is quite possible. I hope that whatever the cause of my tumor moments we can all laugh together about them. Because laughter is proving to be my best medicine. The second I stop that ringing in my ears and the pressure in my head takes over. We can't let that happen.

In other news, actual updates are that Dr. Elliot and Dr Feehs here in town have the results of what their little convention has recommended. I will get those opinions next Wednesday. The Barrow institute has set my appointment for October 25th so Dad, Jason and I will be heading to Phoenix that morning. As far as how I feel? Kinda shitty. Lots of pain in my head and neck and I am for sure fighting off everyone's germs and colds. That being said, each day I wake up and consider myself lucky that Herbert didn't enact some kind of law and order style murder suicide. I die you die Herbert, watch yourself buddy! There was something else I wanted to say but I forgot, classic tumor moment! Anyway, so far so good I'm not dead and I'm not too depressed. I'm just in a stage of endless waiting and seeing and laughing.

Peace and love

Headaches and Smiles, who would have thought

So last night as I sat down to watch the pretty awkward and somewhat disappointing debate, the headache I had been fighting off through class came on full force. Not even witty remarks flying back and forth from Mittens and Barry were enough to keep it at bay.

I took 3 advil in the car on my way home from class and 3 more at home. Welp, it did nothing. Then I drank some water and quietly whispered, "Herbert, lay off, I am trying to tweet for the benefit of our country..." He didn't listen so I tweeted anyway (shameless plug, find me on Twitter @srajabi). About half way through my charming Twittering, I had to stop, the pain was just too severe.

I have become accustomed to headaches. Lingering, long term persistent headaches. This one was particularly bad. The throbbing was no longer isolated to the right side of my brain and had taken over my whole head and face. OUCH. I got the work I needed to for this morning done and abandoned any ambitions of working on my chapter or any further work I had planned. Somehow, between that and ordering perishable birthday gifts for someone online (you know who you are!) it was midnight. I had no idea what had happened. I got ready for bed and laid down. I set my requisite 16 alarms and hoped I would get up early enough to tame the moose nest on my head that I call my hair.

Well I did, and I even combed it a little. How is that for a success story?! Then I put on the nice dress in my closet that I have been saving for something special for almost two years. It dawned on me that nothing was apparently special enough for me, in my mind, to warrant risking my beautiful Leifstodder silk dress. So, I decided, today would be special. I would razzle dazzle my students today. I even put on my pink tumor lipstick (I dubbed it tumor lipstick because it was one of my many coping purchases)and I felt pretty darn cute walking out the door.

Class was really fun today, while I am not sure if I am getting through to anyone the class period was the first time since yesterday my headache had faded. I couldn't even tell that I had a weird, creepy, old man squatter named Herbert in my brain. We talked debates, we talked social media and we talked books. Given that their text book talks greatly about technology convergence and Amazon I felt it necessary to regail the students with stories of my obsessive Amazon purchases, from Quinoa to TP, I get it all. Since the book also talks greatly about the Harry Potter phenomenon of books, movies, and merchandise, I also felt it was necessary to let them know I waited in line for all the books and spent my glamorous new years at HP Land. In essence I embarrassed myself so that they can see that we are all products of our media environment but that doesn't mean we can't be critical of it. They laughed with me. They made really smart commentary and they participated. Even the folks that usually don't. It was great.

After class there was a man lingering by the front of the room while I tied up some loose ends with students who have been sick. I saw him lingering, I smiled at him and turned my attention back to my students. He had a CU hat on, he probably belongs here I thought to myself. Well he did, he is in charge of checking in on our student athletes but he really checked on me and made my day. He said he LOVED my class and wished he could take it. He had a refreshing personality and an excellent outlook on life. He understood the point of what I am trying to get across. We can simultaneously be inside a structure but choose to try and get on the outside to criticize it. He was so self-reflexive. He was so kind. He was a delight to talk to. It was one of those moments where we crossed paths on our life journeys at exactly the right time. He made me feel hopeful, and we weren't even talking about hope.

So I came to go to office hours, my extra vanilla latte in hand and I found my self laughing. I was laughing at the funny message I left for one sister and the funny text I was about to send for another. I was laughing that my dress, this coveted, special, gorgeous dress, was riding up my legs like nobody's business. I was laughing at myself. Laughing at everyone. I was elated. High on life.

Either that or Herbert has cut off some kind of vital blood supply to my brain rendering me goofier than I was, even before. Either way, it felt good to be my goofy old self.

My head ache is back. I'm choosing to ignore it. I am also choosing to ignore the tingling sensation on the right side of my head. Whatever. I look way too cute today to worry. We should never waste a good outfit on worry. And we should never just save them for a special day. Every day can be special if we just give it a chance.

I might just be in a good mood because the last thing I saw before bed was an Old Spice ad that told me to "Believe in my smellf"

Rough patch

The last few day have been tough. The reality of my diagnosis, while always present in my mind, has finally set in. I haven't worked out in days, currently I sit here half dressed for the gym looking for my motivation on my bedroom floor. I think talking to the folks at the Barrow Institute cemented the reality of what is happening. Being that they are the best in the biz, I could comfortably put off any decisions about treatment until I had talked to them. We had casually dubbed them "the Arizona people" since their office is in Phoenix. After every appointment here in town, as my confusion and frustration rose, we would say, "we'll, let's just wait until we hear from the folks down in Arizona, then we can decide."

Well we heard, and initially I was very excited. They recommended a "full surgical resection" and they don't even want to bother with the other choices. They told me what I wanted to hear (aw, hearing, sad day!) that they can give me a good chance with surgery. They are incredibly skilled and all the literature says that the best outcomes come from the most experience. I should feel better.

I suppose it is the finality that I fear. A decision was made, essentially, which means now I actually have to address the problem. It's like everything in my life, it will all be fine as long as we don't reach that final point. That point where things come to an end is always sad. It's like the bittersweet end to a vacation. You are ready for it to end but you can't let it go. It's like saying goodbye and preparing for the next big adventure. Even if the adventure is not the one you would have chosen. I suppose I'm just being dramatic. Maybe it's that I haven't been on any shopping sprees with my sisters lately because those really seemed to help. On that note, I should really figure out how to bankroll this tumor spree. Anyway, who knows, I am going to go workout.

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 --