status quo

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I haven’t known what to say here since my comprehensive exams ended. I made it through the written portion and I defend this monster on Wednesday, so I guess I’ve been preoccupied. Plus I’m getting married and while I am less concerned with the wedding than the marriage I see this as a day where I can show the world how much I love Jason, how happy he makes me, so I want it to be perfect – not for me, for him. So I guess I’ve been preoccupied. And I suppose it’s not helpful to say things like, yes I still have headaches, no I haven’t gotten totally better at being brave about them (maybe a little) and yes my balance still sucks. I suppose I’ve been so preoccupied I didn’t even acknowledge those things to myself. I didn’t check in with myself at all. It was just one of those times where we’re all just trying to get through it, so I hardly felt it at all.

So comps are over so I can focus on what makes me happy (after the defense that is), I can focus on Jason, my family, my friends and maybe even some fun. And I can focus on my research, my reason for being here in the first place. I have to stop being preoccupied. I have to be present with myself. I have to tune back into my own story.

I went to the dietician the other day. Having seen my ability to be the fittest person in the room diminish badly after surgery I decided I needed to alter my diet to keep my rampant cholesterol in check, and so that I could feel some control, some power. I have been steadily and healthily losing weight, learning what work outs I can do and pushing myself further every day. I’ve made pretty good progress, if I’m not too tired I make it to the gym and I swing a mean kettlebell around! But I went to the dietician, thinking I was doing great, not recognizing the stress the exams and all the other general life responsibilities had put on my body. My weight had yo-yo-ed around in a matter of days, and I was making excuses, well I’m heavier today because I’ve been lifting a lot, plus I drank a lot of water… it was so silly because I was happy with my body until I had it broken down into numbers.  I was so tired but I had been running on this adrenaline that wasn’t letting me ever rest, even when I was sleeping. My mind was always racing and nothing was good enough. It’s hard to feel like your whole life’s work is being evaluated and not know the outcome yet, and I had taken that pressure and put it on every part of my life. I wanted to be awesome. So the dietician asked me how I was, she weighed me, she asked me what had been going on. I kept rationalizing any bad food decisions I had made (though they were few and far between – my diet is more of a habit now than a diet). I immediately showered her in a barrage of excuses. I wanted to prove myself. This was about more than my diet. I had found myself in a perpetual state of proving myself.  She almost argued with me, telling me I’d followed the diet to a T. Finally she stopped me and asked me, who I was trying to impress, who I was trying to please, who had put me in this space where I was constantly balancing expectations and whose expectations were they that I was slamming so hard against? She asked me who told me I had to do all the things I felt I had to do.

“No one.”

I told her no one and in that moment tears filled my eyes and I realized, all the work I had done to forgive my body, to allow myself respite, to be comfortable with my abilities and disabilities had been so precariously balanced. One semester of absolute stress, one period of feeling I had to prove myself and it all crumbled around me. I’m not totally comfortable being the girl with the headaches. No, it’s not always funny when I slam into a wall, I laugh to cover the tears that well up as my muscles take another hit. I was so tired in that moment. I looked up at the woman who has so graciously been helping me take control of my health. She had tears in her eyes and she told me, “something major happened to you and no, it shouldn’t define you, but it can affect you. Let it be a part of your life and be forgiving”

It can indeed affect me.

For so long I let it be a central part of my life and then one day, I had to let it go, to refocus, to prioritize other things. What I had to learn, and what I think I did learn in that conversation was that it can’t be at the center of my universe but I can’t erase it either. I can’t be preoccupied. I don’t have that luxury. I have to always be present with myself and my body, and sometimes that is hard.

And I had to remind myself (not to sound cocky) that I am already awesome. 

Yea, I’m awesome.

I know, I sound so brazen, but it’s true. I’m freaking awesome!

So I won’t be so preoccupied. To care for others as badly as I want to, I must care for myself.

That being said, I sure as hell won’t let something as silly as a brain tumor, a headache, or any other stumbling block get in the way of me loving the man of my dreams, being there for my family, and completing research that can help us help each other. This is a part of my life, but I’m still in here, learning from this and moving forward.

I study trauma, the media and how that all operates online. How do we cultivate a space to cope with communities online and what’s productive about it? And how can we use that to help people? And sometimes I have to step back, remember why I do what I do, and help cultivate that space myself.

Peace and love –

Samira

The calm before the storm

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It’s been a while since I have written because I’ve been on self-inflicted radio silence so that I can focus my energies on my upcoming comprehensive exams, arguably the greatest test in getting a PhD, and  a test that had I  done my research and known existed may have deterred me from this particular career choice. I’m particularly test averse. The test starts tomorrow and I decided to go easier on myself than I have in a while, to allow the stress to just momentarily dissipate. To let the worst of my worries today be the mild headache that’s been lingering after medicine and an exploration of how far away I can plug the heating pad and still have it reach my head. I’ve found a sense of calm., weird, neurotic, calm.

This is arguably one of the most stressful times of my life. It is a culmination of sorts, of everything I’ve accomplished professionally and academically thus far. It is one of those times where the stress slowly builds, you can feel it in the pressure in your chest, your shortened breaths, the slight twitch in your eyelid. You can feel it in the increased presence of headaches, you can feel it in your scar. you can feel it everywhere. It is a time that you reflect on how far you’ve come and how far you’d like to go.  I have had other moments of stress, and being someone who studies trauma, identity, representation and how we mediate them, I can understand that each feeling is a byproduct of my environment. That every palpitation is a consequence of my constructed environment. So I allow the stress to run its course and try to keep it in perspective. I liken it to the stress I felt before surgery, though that was a process I had no control over. It was a helpless space. I think of times of life that surprised me with stress, attack or fear, the unanticipated stressors in life that you simply can’t predict. Those too are helpless spaces. This, this is a space where my fate is in my own hands, based entirely on my own capability, and that, well it’s almost scarier.

So today I went to the gym, to work out the emotion, to continue on my path, my quest really, to find my new me, my new size and physicality, my new emotional state and my new form of bliss. I wandered around bouncing from machine to machine, nothing quieting my nerves until I worked my self to a point of exhaustion that gave way to an endorphin fueled comfort. As I walked out the guy at the counter implored me to enjoy today’s sunshine. I could have been my downer self and said, “Oh silly man, I have to study, we can’t all bask in the glory of the sun!” but instead, I looked out the doors, saw the pure blue sky, and turned back and smiled at him, “Thanks!” I exclaimed as I almost skipped to my car. I got in the car, decided some music would be nice.

I don’t listen to music very loud anymore. It triggers a much worse instance of tinnitus in my failing ear and only serves to remind me that I have something everyone thinks I should overcome that I just want to learn how to accept. It won’t get better, it won’t get fixed, it just is, and I want that to be okay. Today, the sun was shining and I figured, what the hell, I’ll drown out the tinnitus with the music. I don’t have to let myself be present with that sound unless I want to and I only wanted to be present to my music. I clicked over from NPR to my iPod where the song Neon Tiger by The Killers was playing. I squeaked my windows down just enough to feel to cool air on my sweat-soaked hair, popped the sunroof just enough and cranked that music loud. And in that moment, I found a moment of bliss. Not just any bliss, but a moment of aware bliss. I was aware that I had drained my body, I was aware I have to start a week of tests tomorrow, I was aware of my scar, aware of my pain, aware aware aware. NONE OF IT MATTERED. I, in that moment, felt more alive than I had in weeks of studying. More free, more okay. I was just….happy. I thought to myself, just keep driving, take a lap, extend this moment, but as I turned on my street and into my garage, I decided this moment, fleeting as it was, served its purpose. I had my moment, felt the wind on my face, let it all go for just a moment. In letting go, I believe, and hope I found the strength to defy my body and prove my mind this week, to grasp all that has been stressing me and take it on head first.

I hope.

Peace and love,

Samira

 

 

Just a Blood Vessel with a Helmet On

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I’m working on a small project, my dissertation (NBD) and it focuses on how we make meaning online. How we negotiate things that aren’t generated online and don’t live exclusively online using the tools and affordances of this particular medium. I’m interested in this because it is the affordances of this technology among others that has enabled certain facets of my journey to understand life with a diagnosis or as a sick person. Though I don’t self-conceptualize myself as either of those things truly. This project as much as it will be an exploration into the lives of others is a way for me to cope with all the new, conflicting and complicated ideas I’ve faced in the last year and a half. I’ve had to reframe myself and watch as others reframe me as well.

Maybe I inspired a few people before with my love of humanity and desire to see it be its best, my ability to give a cogent and powerful motivational speech replete with metaphors of butterflies and rebirth, my willingness to leave a high paying job to pursue the fickle goal of being happy, or my devotion to my family.  Maybe those things inspired you. Maybe they didn’t. But add a brain tumor to it? And I am a bona fide inspiration. Even though in being a ‘brain tumor survivor” I’ve lost some of the gusto in my impassioned debates and I’ve become somehow quieter, calmer, perhaps funnier, and maybe even more easy going. Or maybe I’ve just stayed the same. Maybe I laugh to loud because I see my chance to laugh and I may never have it again, or maybe I try to make you laugh for the same reason. Or maybe I don’t. Maybe I don’t laugh enough or make any difference at all. I don’t know and it’s strange because I embody this contradiction you can feel in every word that I type to this screen. I hate that what inspires you is my desire not to die, so I fight to live. But, I love that it inspires you too. I didn’t die. I could have. I could be more pissed. I could be more crabby (ok, I know, I get crabby sometimes). I love that it inspires you to be better in your everyday. I love that you see pain, you feel empathy and you are inspired. I love that you make change in your patterns, moves, and love because you see in me a struggle you hope to never face. I hate it, but I love it. I only wish we could all inspire one another more fully before death, destruction, trauma or disease come knocking at our doors. Are we really so busy we can’t see one another until we’re forced to at the end of a loaded gun with a finger pressed shakily to the trigger? I had merit before Herbert, I’ll have merit after he’s gone. Does merit warrant inspiration or is it just struggle? Is it overcoming that struggle that inspires or just being in it? Is it smiling in the face of struggle and making it truly feel like a joke? Because I’m good at that one, and I will say it’s the laughter that inspires me.

I had my birthday this month and it was different from last year. Last year I had a tearful lunch with a friend, tears of joy that I made it. I moved slowly from lunch, to the car, to home to bed. I needed to be in bed before birthday dinner. Too tired to change out of my birthday dress, I curled up in my childhood bedroom at my parents house in a beautiful dress, plunked my computer on my lap and thought I’d just take a break. What I quickly realized is that when you have no idea what recovery will be like and you just had your first brain surgery, you don’t really know what it means to take a break. I put my MRI in the computer, I combed through reports about irregularities and tried to envision new tumor sizes as compared with old tumor sizes. I would text my sister pictures and ask her to identify things. Little did I know I was looking at completely the wrong thing, it really didn’t matter what I was trying to look at, I was seeing a lot of things and they all looked like they could be a match to the overly clinical complicated words in the report, so I panicked. Using the tech available to me in bed, I grabbed my cell phone and took a picture of the MRI on the computer and sent it to my sister.

“WHAT IS THAT?” I said with force when she called me. I had sent her this picture:

photo 1 (1)

“I’m pretty sure it’s a blood vessel,” She told me calmly.

“NO!!! THAT!, Look at that!”

She plainly could not tell what I was looking at and me saying, tht nodule next to the broccoli to the right of the other nodule was not helpful. So I searched through the phone for an app that could put an arrow on a picture. I couldn’t find one, so I improvised. I sent her this:

photo 2 (1)

 

“Now what do you see?!” I asked her feeling a bit perturbed.

She laughed, “Sami, now I see a blood vessel with a space helmet on.”

Hmm, fine.  I learned later when I looked at the MRI with my doctor, they already put little arrows where you are supposed to look, so you don’t really need to scour your iPhone apps to find a space helmet that fits perfectly over what is worrisome. If you look back at the first pic, you’ll see the arrows if you bother to look hard enough. Whoops. I was so busy panicking over blood vessels I had obscured the things I was really supposed to be looking at. I couldn’t see what was plainly right in front of me. I couldn’t see any of it. It was my birthday, I was alive, and I was worrying about the potential of the thing that didn’t kill me yet that might cause me a problem that I could not fix or address from my bed anyway.

This year on my birthday, I spent it enjoying the people around me. Wedding shopping with my big sis, dinner with family and friends, quality time with Jason. No tears, just reflection, gratitude and happiness, oh and hibachi (which was delicious).

It just makes you think about what inspires us everyday. Perhaps for a moment it is a fear of dying and that can be productive, but it could also just be a desire for living. Wanting to live isn’t selfish, it’s revelatory. I used to be embarrassed to dance at concerts. I used to hold my arms close in and bounce around slightly on one knee, always afraid to look stupid. Now? I dance, and yes I don’t know what to do with my arms and I have to stop every time I trip over my own limbs and lose my balance and feel my vertigo, but I dance. I don’t care if someone thinks it’s cute or ugly or dumb or fun. I’m going to feel the music, I’m going to dance. Life is my goddamn dance party. Maybe that inspires you, maybe it doesn’t, maybe it’s too simple to be inspiring. Maybe I just don’t want to miss another dance, or maybe, just maybe, I want to live.

Peace and love –

Samira

Perfect imperfection, what a lovely thing to see

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It’s a great whirlwind, navigating the medical system, seeing doctor after doctor, attempting to figure out who it is to trust, what voice has real reason, who knows what’s right from wrong. This whirlwind sucks you in, it fools you, masquerades around you, rushes through you bringing a chill to your bones. With every step you learn the previous one may have been a misstep. You circle your decisions like a vulture seeking it’s already dead prey. Maybe if I’d have done this, things would be different, perhaps if I’d have said this, I’d have found out that. The whirlwind spins you around and around until the dizziness causes you to crash and fall.

And there’s no sense in it. So one day you just stop. Maybe it was a mistake to talk to this person, or to believe that doctors promise. Ok, so what?! So you learned, you overcame and pushed past it.

So you let it go. And once you quiet your mind the wind stops blowing you over. It all stops spinning and you stop, breathe, and think.

It may all have been a series of ill advised decisions and perhaps our hindsight could have gleaned us a brighter path, but for now, were here and here, well it’s perfect.

It’s perfect. Our life is all we have and it’s just perfect.

The new year is upon us and on this day as we’re given a moment of hope that glitters at us, imploring us to start anew, be grateful for who you are and what you have. I’m grateful because where I am is perfect in all it’s flaws. Life is truly perfect imperfection.

Thanks for being by my side through all of it. What a beautiful, amazing, staggering, stunning shit show of a year. How truly wonderful that I am here, well enough to say thanks.

Be well, celebrate and love hard this New Years.

With a heart full of love and peace-

Samira

This time last year…

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This time last year, on a Saturday, I had a party. Really the only party I’ve ever hosted in my own home, it was a momentous occasion for me. I finally got to trim flowers and use serving trays. It only took a brain tumor for me to finally do what I always wanted, wear sparkly pants and have a holiday party. But, being me, it was no normal party, it was a “Smell Ya Later Herbert” party, complete with stickers and a brain cake. I’d have even cut the fruit in the sangria into brain shapes if I’d have had the time. This time last year on a Tuesday, I got pre-surgical testing. They took vial after vial of blood, oddly checked my ankles to ensure my health (doctors are so weird) and had me sign my life away just in case. This time last year, on a Wednesday I had a steak dinner with my family, way too heavy of a meal before surgery, but now that I have high cholesterol steak dinners are few and far between, so I don’t regret it. That night I blow dried my hair and shaved my legs so I’d be presentable for the surgeons, hoping my nicely coiffed hair would mask the fear in my eyes. This time last year on a Thursday early in the morning I woke up and got dressed, like a feelingless zombie I prepared for what I could not understand. That morning I sat on the edge of a dark bed, in a barely lit room and cried to my Mom that I didn’t want to have surgery. That morning I tried to escape a hospital. That day they took a part of me quite literally, they took a little part of Herbert too.

This time last year, I had brain surgery. They took something from me. They took my hearing. They took my tumor (sort of). They took my infallibility. They took my fearlessness. They took a little of my skull.

Then they gave me something. They game me a second chance at my life.They gave me a chance to see into a future and choose. They gave me a chance to challenge myself. They gave me immense love. They gave me a new view of the world. They gave me hands to hold.

When I think of all the crazy, crazy, just nutty things I have faced in the past year, all that this year has held, sometimes I can’t breathe. I suffocate under the weight of it. It drowns me. It’s too much, how could I have come past it, gotten through it? Then I remember that I didn’t. We did.

Everyone struggles through something, my mom had two surgeries herself. My Dad kept us all afloat. Jason loved me relentlessly. My siblings made me laugh, did my hair, bought me giant gorilla stuffed animals. Their kids laughed with me. We did it. We got this far.

It’s not at all where I thought I would be, or what I thought my life would look like. I had hoped with the surgery the appointments would slowly come to a halt, the pain would abate and I’d go back to normal.

I truly can’t remember what my life was like before this. I can’t see my life how it used to be. I don’t know what I looked like, or how I acted. That person is a stranger to me. I don’t recognize her or see her face when I look in the mirror. I spent so much of this year trying to locate her inside me, trying to be like her, look like her, workout like her. The only thing I do like the old Samira is love like her. That’s the only part of my old normal that is left. I’ve come to mourn the person I used to be. To see her in the shadows and quietly wave goodbye. In her absence I’ve come to love (most days) the new woman who stands in her place. She stands a little bit taller, a little more easy going (sometimes) and much much stronger. I don’t know the person I was, I don’t remember. What I do remember is all the joy my life held before. It was bursting at the seams and it is now too.

I think when they took Herbert out they only made room for more love, more commitment, more hope and more joy.

Sometimes I tell Jason I wish I didn’t have this brain tumor, that my ears would stop ringing and my mind could quiet itself. And sure, I’d love less pain, but it decreases day by day and i find myself rising from the ashes like a phoenix. I’m not who I used to be, I still love the world, have compassion to fight for it, but now? I’m resolute. I’m powerful. I’m strong.  I have seen what I am capable of, and it’s more than I ever imagined. What’s more? I’ve seen what my love with Jason is capable of and what love of family is capable of. I’ve seen it. I believe in it. It’s everything that I am.

I hate when people who meet me and find out about this journey say that it is the reason I seem different, the reason I seem “good”. Different from what? I wonder. I am good because I was raised in love, I was granted chances to see the world. Herbert threatened to take that from me. I am good because I fought, not because I was given a choice. I’m good because I choose to be. I am good because I chose life, no matter what that means. I see life’s great contradictions, I see my great contradictions and I choose to be ok with them.  I’m good because I love and it is love that makes me good.

Sometimes when I think of all that happened in the last year, the good, the bad, and the otherwise I think I can’t breathe. So I close my eyes and I think of what I’m grateful for. I slow down, curly my toes under, bite the tip of my tongue and locate myself in this body, in this time, in this moment, in this life and I exhale. In that exhale I release the pain and I  choose, each day, to live this life, to the fullest, no matter what.

This time one year ago my world changed, I changed, and my heart persevered. Thanks for walking alongside me in the journey.

Peace and love-

 

Samira

 

 

 

 

What I learned from my brain tumor (part 1)

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In life, we bicker, take ourselves too seriously and lose perspective often. Even when we’re at our most positive, someone triggering our pet peeves can light a fire under us, a fire that burns a little too hot too quickly. We misunderstand one another and don’t take time to listen. We are impatient with one another in our daily struggles. This isn’t all the time but it happens and it happens to even those of us who have dedicated our lives to mutual understanding and things like “the greater good.” Then, things happen to give us perspective. In my life these have been too often to count but the most recent perspective offering moment in my life was the sudden but not totally outlandish appearance of Herbert, my benign but deadly acoustic neuroma.

I mostly believe that each of us has struggles and to us, in those moments those struggles are meaningful and important. I also believe that seeing more dire struggles can open our minds, trigger in us some type of patience and give us more compassion. So here, I’ve compiled a list of the good, bad and ugly from my life this past year with a brain tumor. It’s only part 1 because this, now, is a forever part of my journey. Having a brain tumor will not always take up the space in my life that it does now (or in my head…because they cut him in half!!!! ha…) but it has fundamentally changed the way I approach my life, just as many other traumas and joys have done in the past.

Here we go:

Don’t be a complacent visitor in your own life, take whatever control you can and let go of what you can’t.

The pressure of difficult things may cause small fractures in relationships turn into big breaks, and pain can make people do crazy things.

Hospitals don’t offer BOGO deals.

Hospitals really should offer BOGO deals.

Despite hating that my mom struggled through three painful surgeries this year as well, it was nice to have someone to take care of and vice versa.

Good insurance can pay off.

One day your insurance will get tired of you and shun you when you’re not yet recovered.

Community can be found anywhere, the #btsm community on Twitter for example has helped me immensely.

Don’t retreat too long, keep going forward, this will someday be a memory.

Someone said something to you, it was mean and you are now stewing over it. Ok, let it go now. Go hug someone you love.

Headaches are in fact a very real thing, they can interrupt your life and cause you great discomfort.

You can overcome this.

Cats, well they’re pretty much assholes, and despite offering moments of cuteness and distraction, they, much like any other arbitrary thing, can’t cure your tumor.

Your health and wellness is not a mandate from an expert. It’s ok to second guess doctors and follow your heart or gut or tumor or whatever guides you.

It’s ok to laugh at it.

Your problem is still not the worse in the world, so stop feeling sorry for yourself (of course after you’ve taken the time to ugly cry about your current state of affairs) and go help someone who needs it more than you do.

When you make jokes about your life and tumor and all that, don’t be offended when others try to as well.

Don’t trivialize your situation, sometimes things are bigger than we were ready for.

You don’t get better at having surgery. More is not better!

Someone should really put BOGO surgery in the hospital suggestion box.

Neurosurgeons? Not cuddly.

Tattooing the word laugh on your wrist only sometimes makes you feel better.

Love really purely.

It’s ok to have a bad day and cry that you spilled coffee on your favorite shoes even though you recognize it’s really just a shoe.

Be brave.

Find support.

It’s ok to be scared.

Try to workout, sing out loud in the car, or run up a mountain, it may make your head hurt but you’ll feel free.

Dancing with babies is the best!

Hug a six year old, you’ll forget what you were sad about (preferably a six year old you know and already loves you!)

Push yourself.

Trying to escape hospitals, not that easy.

Tumors don’t make you a better cook.

Sometimes, yea, even combing your hair is an effort.

Know how much is too much.

Get help if you need it.

Learn everything you can.

The most important things in life are the people around you, find your people and be there, be present and love them whether it’s a funny text, overdue phone call or hot cocoa on a cold day.

Let the love in, life is short.

Many of these lessons contradict each other or sound like Hallmark cards, but I’ve really learned them and I think they’ve been valuable and I’d like to pay that forward. So that you guys, people who care enough to take a minute to scan this, don’t have to go through all the trouble to figure it out on your own.

Peace and love-

Samira

Side Effects

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I’ve never considered myself chained to medicine, or addicted, or dependent. It’s not that I am opposed to medicine, someone in my position doesn’t have the luxury of being opposed to a tangible necessity in my life. That being said, I’ve always, however foolishly, considered myself one of those people who can make it on my own, tough it out, overcome. In Herbert, and in this recovery, and in these damn headaches I often think I’ve met my match. The pain is nauseating, it’s debilitating, it takes your spirit and it crushes it beneath the thunder of its throbbing. Each pounding of the inner structures of my head, neck and brain hammering the nail further down. So, without much thought, and because a doctor told me it would be ok, I take a pill. Nothing crazy, a Tylenol, or an Advil. Maybe 2, maybe 4. I wrap my head in a heating pad and I hope and pray that at least the worst of it will pass. I can make it through the day with the kind of pain that nags at you and slows you down. I can make it through the day with the kind of pain that shocks you and makes you quiver in your seat. I can even make it through the day with the pain that reminds you constantly where and how big your scar is because it radiates out from it. I can’t make it through a day with the pain that takes your vision and replaces it with a fog, that permeates every inch of your face so you feel there is a mask between you and the world, that radiates from your scar to your ear and feels like a time bomb, ticking, ticking, ticking away inside you. Those days I come home. I rationalize my decision because if I come home today I’ll be better tomorrow. But truly, tomorrow is a mystery.

So I take my harmless over the counter pills and I’m fine right? UGH. Nope. Nope nope nope. I went to a neurologist the other day and after feeling a bit unheard he offered me the solution I was given 10 years ago when I “presented with headaches.” I was told Herbert (then and now) is not causing your pain, you have migraine (then) and it is being exacerbated by your use of over the counter meds (now). I was told to take responsibility for my pain. To recognize that I did this. Ok, sure, fine, if laying blame makes you feel good, I did this. But what was I supposed to do? Who has a solution? “Topomax” he said. “You take it daily, it will help your brain with the pain and then you can ween off of the over the counter meds that are giving you medication overuse headaches, or rebounds. ”

No.

I’ve been down this road. Ten years ago. My youth was a mess of pills and facial numbness and strange sensations of pure and absolute insanity and what’s worse? I still had almost daily headaches. Until I weened myself off of the Topomax and fought my body to adapt to the pain and I made it, at least for a few years until Herbert needed to expand his condo.

“Fine. Then cymbalta, it’s an anti depressent and works in the same way ….”

I could see him talking but my mind was racing. Another medicine? I’ve done this, why is this the first solution? Is he listening? I said I didn’t want that? Isn’t there another way? Isn’t that the medicine with the crazy side effect list? This sounds scary.

“You have to recognize what you’ve done to yourself and take corrective action.”

I did this to myself?! I feel awful. I should listen to him. I should take the pill. “I’m not a pill popper,” I manage to utter.

“Well, we’ll see.”

I didn’t understand it but I agreed. I told myself he knows best, and he probably honestly does. Every book, every article agrees with him. But my gut was screaming out in fear. I don’t want to mess with anything further. I want my life back. How is it that Herbert has nothing to do with this? My scar aches. It doesn’t feel right. This doesn’t feel right.

I called Jason and the apprehension in his voice was enough to take my panic to a whole new level. I told him what I’ve told you. Someone in my position doesn’t have a right to be choosy, I can’t not believe in the medicine. And it’s not that I don’t believe but I damn well am scared. So was he, so was I. So was I. His questions were valid and provoked many new ones of my own. Ugh, my head hurt. This whole thing was giving me a headache. I called my older sisters to tell them what a day I’d had. They were calm and collected and their nurturing and patient voices helped me, but it didn’t quiet the anxiety in my heart. My parents supported me in whatever I said and I could hear in their voices they just wanted my healing happy heart back. No one could decide this for me. Jason would help me and decide along side me, but no one could say anything to give me an answer. I had to decide.

I took the Cymbalta for 3 days, and three sleepless nights. My heart, my gut were screaming at me. Let this be your last resort. I called the doctor and for every medicine I said no to he had another at the ready.

What if I don’t want any more pills? What if I don’t want my body to adjust to the numb face, the no sleep, the jitters, the liver damage, the danger of a drink with friends. What if I don’t want to live everyday in fear of a side effect? What if I won’t?

My doctor referred me to another doctor who could give me botox injections for pain, and I might do that, but really I don’t want that either. I want a better way, and one that doesn’t exist. And it’s stubborn and it’s stupid and it’s confusing as hell. All I can do is make decisions for where I am at now. So maybe tomorrow, when the headaches hit and I’ve been forced to flush my OTC painkillers down the toilet, I’ll choose side effects. But for now, I have a clear, lucid, crisp mind for the first time in a long time. It hurts like hell in a handbasket, but at least it is all mine.

My answers, I fear, are a long way off, but my journey is just begun.

Peace and love –

Samira

Tippity, Tappity, Tap, Tap, Tap

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There’s a certain rhythm to chronic pain. It vacillates in a certain way. A moment of relief. A rush of intensity. The booming of the throbbing. Dum. Dum. Dum. Dum. It fits with the ringing in my ears that comes in and out, gets louder and quieter depending on my surroundings. Swish, ring, swish, ring, swish, ring. Dum, swish, ring. Dum, swish, ring. Then you add your breath, trying to create a rhythm that resolves itself. Dum, swish, ring, exhale. Dum, swish, ring, exhale. Then, depending on the day, the moment, the surroundings, you add a tensing of the jaw, a shake of the leg, a grip on a loving hand, and the song becomes a dance. A dance that has a sensibility all its own. A disjointed, uncoordinated but wholly unique dance.

I’ve been doing this dance long enough to have a routine, but sometimes I can’t resolve this rhythm, I lose hope in the routine of pain as outlying circumstances aggravate the situation. I forget the steps and the dance collapses and the unique parts of the rhythm become an uncontrollable chaos. A chaos that leaves me listless and weak.

The last few weeks have been like that, and having finally found myself again, I can reflect back on the way I made it through. Here’s what happened:

A few Wednesdays ago I had to get a spinal tap. I was told it was routine. It was a diagnostic tool. Something intended to help us figure out why something as simple as a sneeze crippled me in such a devastating way. My pressure was high in my head. Not high enough to show my brain being crushed in a scan but high enough to make me uncomfortable and be worrisome over time. Ok, well, all this crap is worrisome over time. So, I try not to worry. Then I stifle the worry and later I panic and cry on Jason’s shoulder the morning of a spinal tap, and he holds my hand and tells me I don’t have to do anything I don’t want to and walks me through the process. The spinal tap went fine aside from a moment of vasovagal shock, aka me warning the doctor that I am super sweaty and about to puke on this pillow. I had just gotten over the shame of yet another doctor seeing my butt crack when he came in to give me the results. My pressure was high, not dangerously high, but high enough. Maybe the spinal tap would bring me to equilibrium and I’d be fine. Fine. I’d be fine. I don’t even have a framework to understand those words. Fine.

The spinal tap took me just past equilibrium to low pressure. With the most excrutiating pain I’ve experienced since my craniotomy, I found myself unable to stand, to move at all. I couldn’t roll over in bed. I couldn’t sit down. I couldn’t sit up. I was trapped in a horizontal position with nothing quieting the pain. I felt my muscles disintegrating beneath me, each time I struggled to get up I felt my joints crack and ache under the weight of my immovable body. I felt heavy, listless and an anger I couldn’t process took me over. I would look at Jason and hope he had some words that would heal me. I struggled with the idea that doctors kept promising me healing but it seemed each procedure made me worse. I was on bed rest for 5 days. 5 days. It’s not a lifetime, it’s not even a week, but it was 5 days that took me from optimistically hopeful to painfully angry. So what did I find in this 5 days? What did I learn? What was productive about this? I learned my family would do anything to keep my spirits up and make me whole again. They fought for me in various ways. They advocated for me. They proved the reason for my gratitude. The showed me what I live for. But I learned more than that. One day, as I threw world’s largest pity party, I looked at Jason and wondered aloud why we ever went down this path. This path of surgeries and diagnosis, when I was fine. I mean, sure, I was dizzy, but I was fine. I told him, Herbert would slowly have crushed my brainstem and one day I’d have just faded away and no one would have been the wiser. He looked at me like I was nuts and though I was mostly kidding he looked at me the way he does and said, “I’d have been the wiser.” He would have been the wiser. It was in that moment I thought, ok, enough, time to snap out of it. I can’t control the pain, but I can control my reaction to it. I can still fight for my life. I can still have my life, my love, our story is just beginning. I remember looking at Jason and all I could think in my mind was, “it was always you, and it always will be you.” He was my hero that day, and really, every day.

Today at physical therapy, my bi-weekly adventure into scar tissue massages, vestibular therapy, neck therapy and now relaxation techniques and pressure point massages, I found myself moved in an interesting way. Having infinite wisdom, the physical therapist told me that I am indeed stressed out. Yep. So? So she thought she could help and so today, she did all the regular therapy things but then dimmed the lights, played a soft song, and went on to do a pressure point, touch and sound something or other, meant to bring me to a point of relaxation. Turns out, I’m not a very good relaxer. But there was a moment, a moment of immense hope. She tapped on my arms, swept her hands over my legs, tippity, tappety, tip, tap, tap tap. She placed both hands on my head at one point and for a moment I felt relief. Then as she proceeded she held my hands and I suddenly felt a rush of emotion and tears stream down the sides of my face through tightly closed eyes. I realized something. It was fear. It is fear that keeps me from finding a way out of my pain. Fear that prevents me from working through it. No it isn’t all an emotional journey, I have true physical ailments, but I hide behind them. I allow them to have power that they didn’t earn. I fear relinquishing control and allowing pain to go and relief to come because I don’t know what would happen to my status quo. But today? I felt the way I did when Jason held my head in his hands and said he’d know the wiser, the way I do each time I hug him,  and the way I did when I first saw my family after surgery, and how I feel each time they show up for me and I for them, and the way I do each time my beautiful niece and nephew run to me and give me a hug, I felt full. Full of love and willing to let go and take a leap of faith. A leap into healing, a leap into letting go of fear, a leap into everything my life can be. I’ll relinquish control and instead take charge, and let the fullness of life make me whole again.

So my rhythm is way off. It’s all tip tap, toppety, bippety, boppety, tap, swoosh swoosh. But maybe, just maybe I can work with that.

Peace and love –

Samira

So that’s your move?

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It’s always when I’m at my crabbiest when something good happens but also I seem to be at my chipperest when not so good things happen. Hmmm. I should maybe try to be a crabby curmudgeon all the time…

A couple of weeks ago I had to go to Washington DC for a conference. Simultaneously and unbeknownst to me, Jason had bought us tickets, presumably to sweep me off my feet, to go see Ira Glass speak in Boulder the same day I was set to present in DC. You see my conundrum. It was special that he took something he knew I loved and made an effort to share in it so I did the fastest most whirlwindy trip to DC ever, head pounding the whole time, a mad rush to do everything, no time to be present, no time to rest. I flew out Friday late and night and flew back the moment I answered the last question in my presentation. I was frustrated because I was in this moment of pain relief stagnation. My stomach was being torn apart by pain killers and so I was scaling back. Rebound headaches were crippling me and no amount of breathing or positive thinking could take away the throbbing, radiating pain. I just wanted a moment of rest, some respite from the rush, from the pain. But I persisted, as is my way of handling things and I made it back just in time, to find Jason at my house dressed impeccably, ready to go.

“Go out something nice on,” he said. Ugh, my buttons had ripped off my dress and the floral target leggings I had on were making me feel anything but beautiful. If there were ever a time that I felt frumpy, this had to be it. My impeccable curls from the morning had devolved into a frizzy, poofy mess that looked not unlike a birds nest. My dyed blond hair was blending in with my too light for my skin makeup and I really couldn’t tell how good or bad I smelled. “Aren’t you going to shower?” He said to me as a slowly, tiredly and clumsily made my way up the stairs. “Shower?! What for? To sit in a dark room in Chautauqua? I don’t know why you’re making me dress up even…” Suddenly my fabulous self was so tired that I didn’t even want to dress up. I love dressing up! What a baby I can be…But I felt excited to be going on a date after a long and productive day so I threw on a maxi dress, smudged my eyeliner on and came back down.

“Hi pretty” he said to me as I came down the stairs, then he rushed me out the door to take me to our favorite little hole in the wall Italian restaurant, which was closed, so he rushed me to the closest place he could find and we ate our tacos and he rushed us out of there and I just kept thinking, rush, rush, rush…doesn’t he know the show doesn’t start for well over an hour?! So we get to Chatauqua, walk past a wedding, and get to the theater and I see what looks like a small party. “Look Jason, another wedding!” It must be a sign that our wedding should be a Chautauqua, I thought to myself. Nope. It wasn’t a wedding. It was IRA GLASS. In the freaking flesh! I could have peed.

“Go up there, talk to him!” Jason told me. I was dumbfounded. A storyteller standing at my doorstep and I had suddenly nothing to say. I was inspired, grateful, confused and happy all at the same time. So I eeked my way through the crowd, drink in hand trying to look cool and literally stood and stared for minutes maybe? Possibly hours, I really have no idea. Long enough that my awkward jokes were going unnoticed and my creepy staring probably made Ira Glass want to run away. Finally a couple of nice women, in combination with Jason, flung me forward where I promptly told Ira Glass how much the stories I heard on the radio meant to me. How much they had helped me. How much seeing David Rackoff dance had inspired me. And… I cried. Yep. CRIED. I’m told Ira Glass teared up as well, but really I can’t be sure. I was too busy reveling in the moment to make sure to document it accurately in my mind. The one thing I remember is me telling Ira Glass that my fiance surprised me with this amazing chance to meet him. Ira Glass looked over at Jason laughing, “so that’s your move?!” And what an amazing move it was. A move that showed an appreciation for me, for my desire to know stories and my belief in sharing them. Something Jason showed me in that moment that he loved about me.

OMG. Nerd alert, this is the coolest picture ever.

OMG. Nerd alert, this is the coolest picture ever.

I got to say how much those stories meant to me. I got to see a side of them that I never had. They became real, personified, tangible. Those stories helped me know my story. Those stories helped me know Jason. Those stories helped me cope. They made me laugh. They made me cry. Stories. The stories we tell make the fabric of who we are. So this mad rush to a meet a public radio celebrity was more than just a fun date, it was part of our story. It was a rush to get there, but when we arrived those special moments stood still. Jason pushing me forward, laughing next to me, making new friends, drinking weird beer that is infused with espresso. Those moments, they brought me out of my rush and into the moment and moments are all we have.

Jason taking in a lovely moment with me :)

Jason taking in a lovely moment with me 🙂

Since that amazing day I’ve had many other days, some awesome, some less awesome but I’ve shared a lot of moments with a lot of people I care about. Those moments they’ve pulled me through to this moment where I sit here poised to handle the next set of challenges Herbert has left at my doorstep. My discussions with doctors have gone from surgery to shunts to spinal taps to pain relief and I’ll figure out what’s right. I walked into a doctor’s office, happily thinking I was over the hump, the hard things were over, and I was outwardly shocked to hear that that mysterious pain that dragged me into the doctors office matched up to the gnawing feeling I had in me that I wasn’t getting better. I fear often that I’ve lost my voice, I can’t figure out where to go or who to believe and I’ve come to second guess those decisions I felt so sure of at the time. Which doctor can give me the best outcome? Who can cure me quickest? Whose opinion is right? Whose eyes see rightly? Trying to maximize healing and minimize side effects, it seems, is not such a straightforward task. So I meander through the decisions with a mix of humor, suspicion, tears, hope and anxiety. There will come a time where I have learned to accept that where I am is where I am and that’s ok.

In the meantime, I’m going to try to enjoy the moment I’m in.

I have a favorite quote from the French author and explorer Antoine de Saint-Exupery. He says, “Voici mon secret. Il est très simple. On ne voit bien qu’avec le cœur. L’essentiel est invisible pour les yeux.” (OR IN ENGLISH “And now here is my secret, a very simple secret; it is only with the heart that one can see rightly, what is essential is invisible to the eye.”) So see with your heart, and crabby or not, don’t miss another moment.

Peace and love –

Samira

Recovery

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Recovery is just a son of a bitch. 6 weeks they say… 6 weeks and you’ll be back to your routine… 6 weeks and you can “get back in shape”… 6 weeks and perhaps the pain will subside…. 6 weeks and then… What? Some kind of absolution from the horror that is brain surgery? 6 weeks to normalcy? 6 weeks to comfort? 6 weeks to fun? Hmmm. 6 weeks has now become an entirely arbitrary amount of time to me.

What they don’t tell you is that 6 turns to 7 turns to 8 turns to 9. And the reprieve from the pain? It doesn’t come. The pain lingers, hiding, subtly masked behind a joke or smile. Not a very good hider it can be coaxed out with a laugh, a sneeze or a cough. I know, right?! Those basic bodily functions can be a real son of a bitch, especially when in recovery. Yea, a son of a son of a bitch.

Being that I don’t want to shock my newly cemented head anymore than dental work 3 weeks after surgery or starting back at phd school, I opted not to go back to CrossFit as it is a surprisingly bouncy activity, one not superbly suited to recovery (that SOB). So I spent $74.90 on a workout DVD and spend each afternoon Brazil butt lifting as it were. The workouts are surprisingly hard, my weights are surprisingly light and my balance is (not so surprisingly being that I had a vestibular tumor) awful. The workouts tax my body and at points I am barely flailing or I’m clutching my knees with my palms catching my breath as the tan toned bodies in the video continue forward. Ugh. My coordination leaves a lot wanting. Yearning to be as sexy and beautiful as the women shown, I purse my lips, oblivious to the asymmetry that is magnified by such facial gestures. I awkwardly will my body right and left thinking one day these jerky movements will convert themselves to graceful dance moves. That’s right, I’ll be someone with moves… Welp, it hasn’t happened yet. My body seemingly only moves to the right. I’m not an ambiturner! So each night I grin and bear it. I smile when the instructor tells me to and sometimes I even have fun. But in the back of mind is a constant justification. This would be easier if I wasn’t recovering. It’s my eternal excuse to myself and yet it is that which I am least forgiving of in my own life. So I practice patience, compassion, and I try, though I see nothing but it’s imperfections, to honor my body.

This process of recovery, AKA hanging with worlds biggest SOB, has had it’s redeeming moments however. Through fear and the sudden nature of needing another surgery, my life’s greatest miracle has revealed itself. And I’m not one to believe in such things, but the greatest love I’ve known revealed itself to me in new and powerful ways. Love proved the answer to my questions of where life will take me and I find myself engaged to a man who has stood proudly by my side. In an unending love that is surely unbreakable by now, I find myself motivated to lift this butt to a level no one has seen! But it’s about more than that. The physical is simply a manifestation of where I’ve been and where I’ll end up. This vessel will eventually lose it’s form regardless of the DVDs I watch and do, my hair will grow over my scar and the reminder of my every day struggle will be a covered over memory. But I’ll continue to fight for my body to honor my mind. I’ll recognize the immense luck I’ve had to have has survived and I’ll slap that recovery SOB square in the face. We overcome only what challenges we are ready to face. This physical challenge will open way to much more Important answers as to who we are and how we should be. At the end of the day, we are fighters, we have to be. And we finally see that if we love hard, work hard and fight hard, life will grant us (and we’ll take it!) a win.

My state is mostly underwater this weekend and many are struggling on this night in Colorado to most literally keep their heads above water, so we all have that which we must fight to get past. Life is recovering from one moment as we prepare for the often hidden beauty of the next.

I’m off to go recover. Wish me luck.

Oh and screw 6 weeks. Life is a process, a journey to enjoy and 6 weeks can’t contain all the lessons, love, and joy needed to recover.

Peace and love,

Samira