Livingwithherbert.com

Living with Herbert has moved! Find all my old posts and new ones at Livingwithherbert.com !!!!

See you there!

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