That day

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I hadn’t been able to talk about it much in the first two weeks after it happened, that fifth surgery. At least not without doing so flippantly, not with most people. I felt immediately better when it was over, the anesthesia was gentle, the doctors adept, the process straightforward, but I didn’t talk much about that day itself because it was one of the hardest days I have ever endured physically and spiritually. When the surgery was over I felt healed in my body and knew that in time my heart would follow suit (still working on that one). I was able to speak technical details to people about what happened and when, at what volume, and why. I told them about the procedure and about my pain levels. I was able to provide details about CSF, how much was leaking, the sensation of fluid leaving your body without cause. It wasn’t until I returned home, to my own home, in all its beauty and isolation that I truly realized what I was leaving out of that description of that day: it felt like dying.

In the last few days I have said it out loud to my family, to my family of choice too. I have said it and the words rang hollow. It felt like I was dying. It felt like my body quitting, screaming that enough is enough. It felt like my spirit saying, “hold on for the one’s you love, just hold on.” I told people, I kept saying it, feeling like maybe I had to convince them that this wasn’t the dramatic flair of an overtired and melodramatic woman, this was how that day was. I felt like I was convincing myself, so I didn’t lose that feeling because I knew, in those moments of total resignation, there was something to learn. Something to uncover.

I remember thinking, call the people you love, let them know you love them.

It felt like dying.

The thing about it though, is I don’t know what dying feels like, not in any real sense. I know surgery, I know pain, I know healing, I know coping. I don’t know dying. What I do know is the construct of what death is. Death is suffering, death is letting go, death is leaving this world and releasing your spirit. It felt like my body could take no more, but in a way, I knew it wasn’t my time. It’s just that when you get sick enough, when your body endures a lot, the fear becomes greater than anything and it clouds your ability to fight for your own value in life.

Fear can be such a challenge. Since my surgery my fear has been replaced with acceptance. I accept the state of affairs. Herbert may have left a little chunk behind, you know, for posterity’s sake. Flo hasn’t completely gone either. So they may continue to persist and if they do, I accept that I will have to deal with them. It won’t be easy, it may not even be fun, but it will be within my ability to deal with it. My body has endured, my body will endure. So I don’t fear that CSF that drips out every here and there, until it pours I will stare it down.

My fear started to shift that day, that day of the fifth surgery. I just am starting to discover that, but my fear shifted that day.

But first, it had to take over.

After I was sent home from that grueling day in the ER, I was just happy to have sandwiches and get to have a celebration of many members of my family who were celebrating birthdays. The leak was persistent but manageable, though aggressive enough it couldn’t be left alone for too long.

After a happy night I went to bed, even saw a friend and ran errands the next day. Perhaps it was too much too soon. Perhaps illness just takes time to truly show us its full force. I managed to get a cruel GI bug and spend 2 days sick, vomiting. With every trip to the bathroom I feared infection. Was it meningitis? Was it something worse? It was, as it were, something routine, but it had combined with my CSF leak rendering me weak and lifeless, scared and frustrated. I spent night after night texting my siblings looking for comfort. I spent the early morning hours looking for on call doctors to comfort me. They all told me it is going to be ok. I knew that. I just didn’t know when or how. I even got a house call from a benevolent doctor telling me how to get my strength up for surgery. I overheard her telling my family that I can’t see it now, but the weakness will dissipate, I will heal, and this will be a distant memory. Probably true, I thought, and maybe that helps my parents, but for me, not entirely helpful (though I appreciate the sentiment and the urge to comfort my family). Sure, if we are all destined for long, happy lives these moments do fade, leaving tracks but becoming memories. We heal and we move forward. Time is a healing force. Time is also a stupid asshole. We don’t know how long and how happy our lives will be, and that’s not a complaint, it’s a fact. We don’t have a guarantee that our worst year may not be our last. We don’t know. So as someone who tries (and often fails) to remain in the present, enthralled in my life good or bad, those days were shitty (literally and figuratively). Somehow I survived, with a tissue up my nose, to Thursday, it had been 5 days since they sent me home from the Emergency Room, and over those days my leak worsened and worsened.

Wednesday night I remember laying flat, no pillows, just flat. “If you have a CSF leak, lie flat,” those were my instructions. The assumption was that if you are lying down flat and your body leaks out too much CSF, being horizontal on the ground will allow your body to equalize the pressure. My body is a moron though, so it made MORE CSF. Then, it made more CSF. Then after that it was all, oh hai, I think I’ll make more CSF. I got sicker and sicker, the CSF draining into my stomach, making me nauseous and cranky. The drainage from my nose was now so aggressive the overflow was coming out of my mouth, I wasn’t even sitting up or bending forward, my shirt was wet, my pillow soaked. When it hit my throat I would choke. By the time I woke up Thursday, by the time I made it to that day, I was lamenting in tears that the doctors should not have sent me home. I cried to my mom, “it’s too much, it’s too much.” I vomited CSF. I cried. The pain was blinding me and I writhed around in my bed wishing, hoping for a reprieve. I emptied tissue box after tissue box with this relentless fluid. I got up, I had to make it to the hospital, I had to get there. They had to fix this. I needed them to fix this. I remember struggling to shower and seeing my face in the mirror. I was unrecognizable to myself. I was pale. I tried to smile at myself and it fell flat. I called the hospital, urging them to let me come earlier. The nurse told me, “if you’re too sick we can reschedule the surgery.” Multiple people had said that to me in the days I was home waiting for my surgery and each time I would scream out “NO!” I needed help and I needed it now.

I had reached my saturation point with the leak (pun intended). I felt like my head would explode. The pressure was intense and so painful. If I was going to live, I needed help, because this shit felt like dying. It was my fear that helped me realize though, I had to accept this, whatever this ended up being. I didn’t get a choice, and blady blah it was unfair. Ok so what? It’s your hand, it’s been dealt, freaking deal with it you giant baby.  My fear reached its pinnacle when one of my dearest friends called that morning. She heard it in me, the fear, the frustration, the giving up.

“Sami, are you ok?” She asked me.

I couldn’t not cry, I kept gagging on CSF, “I’m so scared,” I told her. I told her I was scared I couldn’t make it, that I wouldn’t make it to my noon check in time at the hospital. How will I withstand the pain. She was comforting and empathetic. She was, as she has always been, an incredible friend.

She helped me see my fear. Somehow that conversation helped me take hold of it, even as it had a complete hold on me.

Then, with the help of many friends and family members, surgeons, nurses, and residents my fear slowly shifted. It consumed me for 2 weeks after the surgery, taking my humor, my light, my heart. Then, with continued support, and light from others, it shifted to acceptance.

It was my surgeons voice that helped the turning point come. “If a leak is going to reveal itself, it will reveal itself”. Go about your normal things, he told me. He laughed with my jokes and even anticipated my irrational fears, he comforted me. I can hear his voice now, it has a unique sound to it, and a cadence to it. I told him how comforting he was, I told him he was a shoe-in for his own TV show. He asked if I could “try not to freak out.” I told him I could work on it. The calm rushed over me in the next days. My leak has not fully resolved, and occassionally I look down at it and think, “Flo you stupid bitch, I will kick your ass,” and my lips quiver and my voice shakes, and usually I cry silently, but then I realize, yea, I’ll kick her ass, and that will be that, and I accept her for her role in my life. So I still have my moments, where fear isolates me, but then I see myself, I see that I have survived so many things beyond just these surgeries and the past few years. So then, I accept it. I accept the hearing loss. I accept the pain. I accept the pressure. I accept the lack of control. I even accept that Flo and Herbert, they will always be a part of me, even as memories someday, and I can push through that fear.

I didn’t talk much about that day, about what it felt like, I tried but failed really, until this week. Then I started to name it. It felt like loss, it felt like crushing pain. It felt emotionally devastating. It felt like what I imagine dying to feel like. In naming it I have begun to let it go. I won’t forget it, I won’t forsake it, but I will acknowledge what it brought me, then I will let it go. I think I’ve started that journey. Today, for the first time in a long time I felt comfortable in my own skin, and I felt different from who I was before. It was exhilarating even while profoundly challenging. It’s just a drop in the bucket, but it was a step closer, a tip toe towards understanding and accepting who I am now.

Peace and love,

Samira

Snow

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I’ve never been that great at being alone. I mean, I live alone and truly I thrive in certain ways, but I’ve never been great at those times where I have extended periods to strategize and coordinate for myself. It’s why writing a dissertation, when I really get down to it, will be a rough go for me. It’s just that I can’t be alone with my thoughts too long. The venom creeps in, the weight of it all seeps into my skin and I go into a noxious spiral of negative thoughts.

It’s like when you spiral out while Facebook stalking, suddenly the whole world is having fun without you and you, well you’re just there, trying to sweat out the anxiety from your broken heart and broken body.

I pretty much just imagine everyone in their striped matching PJs yelling at the computer, “Is everyone hanging out without me????”

So I try to distract and distance myself from the heart break of my recent life. And generally I do okay, write it in a journal and get it out, go for a walk, go to the gym. Normal things to help my body let my mind let go for even just a moment. I try to focus on the real and genuine outpourings of love, which are bountiful and fulfilling. I try to embrace the love I have been given and it really does help. Everyone who has been here for me, you’ve helped and continue to do so in so many ways, if not just for helping me thicken my skin with your words of hope.

But it’s snowing.

And I just had brain surgery.

And I miss my ex-fiancé.

Ok, so, distractions… What do people do when it’s snowing? Oh I know! Skiing!

Wait, you know, maybe not this soon after 3 craniotomies, plus I barely trust myself to drive around the block.

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Oooh! I know, snowshoeing.

Ok that’s dumb.

Ok, alright, inside stuff. Work! I can work!

I tried it, didn’t help. Stupid work, why can’t you be more sexy?!

TV! You love TV.

Turns out even I reach a saturation point with TV.

I even tried a long walk with the dog, in the blowing snow, it was, how you say, overrated.

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I’m just, stir crazy.

So I sit here, with my venom, it’s buzzing right below the skin, pulsing out of my scars, begging me to pick at them until they bleed and I regret picking so hard. I’m trying to replace the venom with silence. The silence the snow brings to a city. The silence that allows us all to look at the sparkly white sidewalks in hope. It’s like a clean slate falling from the sky urging us to let the quiet resolve of healing and resilience in. So I am trying, to heal my heart and let that clean slate in. And sometimes we must know, that some of that venom stays, even once we’ve quieted our minds and healed our bodies. It stays and it reminds us of where we’ve been, but once we’ve moved forward, the venom doesn’t take over, love does. So here I sit, in the silence, knowing my virtue lies in my ability make my experiences seem like they were magically meant to be, to bring me here, to this moment to admire the snow as I figure out how to move forward.

Peace and love,

Samira

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“We killed a rooster for you”

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I don’t write everyday. Some days it’s hard to know what to say. Some days it’s hard to know what to do other than sit and stare and wait for energy, or motivation, or some kind of return to who I was or who I see myself as. Some days I spend the whole day doing things, things that I see as belonging to a previous life. Then I come home around 3 pm, beat up from the day, and I sleep. I don’t write every day because I am not sure how I would seem.

We spend so much time worried about how we seem to others. Is there something on my face? Is my hair doing something weird? Will people see that pimple? Is my right eye blinking with my left?

Or more truly, will people see anxiety, fear, exhaustion, sickness, pride, honor, ambition, hubris, depression, ambivalence when they see me?

These are not my anxieties alone, we’re all worried about how we seem. What will people read into? Will I be normal? Will I be different? Is that good? Is that bad?

We live in a world of appearances and so often we scoff at what we don’t understand.

My aunt called one night while I was at my parents house and somehow through my medication induced sleep and the inability of any of us to smoothly use the telephone intercoms, I somehow got the impression that my family was killing a rooster in the back yard. I sat up on the couch in shock and thought, “oh god did the dogs do it?” Then I realized no, they said it clearly in Farsi, a rooster was dead, and we were responsible. “Oh shit,” I thought to myself, “that was too many surgeries, mom and dad have officially lost it.” I tried not to think of how they did it, I shouted at my mom in the next room, “Mom! Did dad kill a chicken? Or was it a rooster?!” She just smiled as she brought me the phone.

How does that seem to you?

Finally I realized my aunt was on the phone and when I spoke to her she cleared up my confusion. “We had a rooster sacrificed for you, he was given to the poor.” I told her how confused I was, I thought my dad was in a back yard in suburbia slaying poultry. She laughed and then apologized for not getting me a lamb. “It was too expensive” she told me. Well obviously. Lamb is of course the classiest of all the meat sacrifices!

So how does that seem?

To me it seems like love. In Iran when a loved one struggles with something bad, the helplessness is replaced with an act of charity, buying and butchering meat for the poor brings luck, the blood of an animal not squandered somehow cleansing us of any sins, bringing us hope and drawing us out of the darkness and into the light. I may not be explaining it super well, but it’s a nice thing to do. They paid alms and in return asked those affected and helped by their act to pray for my health, to bless me. I am not a religious person but I do feel like a spiritual being in a human body and so in their effort to regain control of a senseless situation, I see love. I also see that maybe a family that didn’t have much, had something to eat, and that’s pretty great too.

Though I’m super glad no one was killing anything in the back yard.

So many of us look across the world and before questioning and understanding, we criticize. It’s an anxiety I’ve internalized in my life, the anxiety that you will somehow be less than normal, too weird, an oddball. As a scholar I know without fail that normality is a construct, a way to regulate society and for powerful forces to cause us to regulate ourselves. So I don’t pay much attention to it usually, and it really doesn’t matter.

I’ve veered far off the path of “normal” and for the most part I am proud of who I am on this side of the construct. I am no longer in a fully able body, and I see my disability as my gift to understanding others. I can’t do many things I used to love, and sometimes the sadness creeps in, where will I fit in when I don’t fit where I used to? My puzzle piece has changed so I too must find a new puzzle. So I focus on cobbling together what I know of all the pieces and where blanks arise I try to find new pieces to fill them. I am no longer able to withstand surgeries without slowing me down. I am slow when I walk, measured in my steps. But where others see a snails pace and a nerdy wheely bag, I see what I may have missed before. What I learned from the prayers and efforts of my family across the world is whoever you are, even if you’re not entirely sure who that is all the time, be that person. Be true to that, without shame. Be present with yourself. You wanna kill a damn rooster for your family? Then kill the damn rooster!!! (Sorry to any vegetarians, no offense intended!)

Where I am at now doesn’t seem like much. I am back at work and easing slowly back into my dissertation. With my pain pills I thought I was some kind of super hero because my skull didn’t hurt that bad and now as I have weened down to almost no pain killers (even OTC ones) I can feel the sharp pain of each of the last 3 cuts into my skull. I feel the tender skin around my scalp. I feel an ear that seems foreign in my body. I feel what was taken. I feel what was put back. I feel pressure. It makes you feel empty, like an object, a project. It makes you engage your body differently. It brings fear. It’s palpable. It is all excruciating, it is all real, and it is all – at least for now – a part of my normal.

So how does that seem?

Seems alright to me. Not perfect, but not all bad. Each day I get through makes me feel tougher, stronger, more capable. And I am an oddball, and the more my physical body becomes as quirky as my personality, the more I realize that oddball, it just seems perfect to me.

So when you look at me, I hope you see all of it, the anxiety, the fear, the determination, the pride, the will to live. I hope you see someone different, but hopefully someone worth knowing. And I promise, I will do my best, to see all of that and love, in you.

Peace and love,

Samira

How are you feeling?

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I used to look in the mirror before I got in the shower, looking in quiet observation of the curves of my body. I would marvel at the strength I had put into the contours of the muscles. Strength that took time to build, strength that helped my internal self push harder and longer. I was fit and it showed and though I always had something to nit-pick at, I was proud of what I had fought for.

I don’t look in the mirror like that anymore, I avert my gaze as I throw my clothes limply to the ground. The glimpses I catch show me weakened muscles, the contour of my biceps having fallen to a straight line. I don’t look at myself anymore. Not in the same way. When I do look for a moment, I scrutinize the eye that doesn’t close as well and the smile that takes such extra effort. I stare hard at my nose and see small bits of CSF drip out and fear paralyzes me in the mirror.

I don’t look at myself in the mirror anymore. Not because I am worried I am not beautiful anymore, despite what I thought it would be it is not a vanity thing. I don’t look because I don’t know where I’ve landed yet, the person I see, though she is weakened and has tears streaming down one side, she doesn’t exist anymore. She doesn’t fit the image of myself I have in my ideal heart.

I just don’t look anymore.

That person we knew, she’s a ghost in the shadows, she’s just not here anymore.

A lot of you know I am suffering from a broken heart. The love of my life and I broke up a few months back after a series of unexpected events turned our plans sideways. There’s plenty of blame to go around but all I have now is mercy and forgiveness, that and a broken heart. But he’s still my best friend, and that’s something, though a complicated, difficult and often heart breaking something, and often a something that leaves me with a false hope for a return to a life that doesn’t exist anymore, not because there was anything wrong with it, but because I have changed, fundamentally and wholly, and so have lots of circumstances. Though sometimes I miss the old me, because the old me got to hang out with my best friend all day long.

Because of all my love and I went through I never knew how to answer people when they asked me how I was doing. The answer was bad, but I like to be funny, and bad is often not funny.

Then I needed more surgery.

Then I needed more surgery than that.

Then I needed more surgery than that one too.

And I saw the days ticking by on the calendar as I sat listlessly in the hospital and the breath got stuck in my throat. Shit, how much of life will I miss?!

But then I realized, was I even living before?

I have been told by many that I should distract myself, to find things to shift my focus. That’s not so easy when your life is a list of times you last medicated and where you left your ice pack. I do okay by escaping into silly TV shows but I don’t want to distract myself really.

I want to feel what’s happening to me. I want to sit in the shit to figure out why the world would cover me in so much shit in the first place. And in so doing I learn who I am and I see what I can be grateful for.

So here’s a list:
Grateful for my mom who has essentially had a month and a half slumber party with me, bouncing from hospital room to hospital room without a complaint.
Grateful for my dad who despite a difficult year for us maintained my health as his priority and carries me in his heart with a genuine love.
Grateful for my big brother and our late night Modern Family parties and his thoughtful questions.
Grateful for my big sis for sitting in my bed with me and watching shows she is not caught up on so she has no idea what’s going on. That and the way she loves me.
Grateful for my other big sis who listens to me panic and calms my nerves with her soothing pediatrician voice. That and the way she understands me.
Grateful for my cousin who has cared for my like few people in my life have, he has been an unexpected best friend in all this.
Grateful for my niece and nephew who tell me I’m there best friend and joke with me.
Grateful for the brother in law who answers questions patiently and thoughtfully.
Grateful for the friends who show up with little gifts and conversation and love and light.
Grateful to that giant family of choice I have online and offline, to everyone who has been holding their breath asking me how I am doing.
And grateful to that man I love, for being my friend. With all that we have been through I am grateful for his patience and kindness and his love, even if that love has changed, even when it breaks my heart.

Most of all I am grateful for that mirror that calls me out, waiting for me to regain my strength, to fight back, to become the woman this journey is forcing me to become. I am grateful for the conflict I feel in my heart that draws me out of my comfort zone and leaves me firmly in a space of doubt and fear. Now I have a chance to discover myself. Now I have a chance to be who I was meant to be. Or maybe now I simply have a chance to live again.

So how am I doing?

Well I don’t know how to answer that.

I live a charmed life, I know that. I am blessed to have been able to get treated and have my life saved. Not just once but over and over again. And it may not be over and I have to make my peace with that so usually I tell people I am “hanging in there.” Whatever that means. But how am I, really?

My heart hurts sometimes and that makes me sad. But then sometimes I forget and I am okay. My head hurts a lot, but I take the pills and I am ok. My fear takes hold of me but then I cry and make a joke and laugh and laugh and it’s ok. I lose sight of myself sometimes but my family and friends hug me and I am ok. And in all of it I am surrounded by more love than I think any person should be able to ask for in life and that in and of itself is the most amazing gift. It’s a beautiful thing.

So I guess what I’m saying is, I’m doing ok.

And I’m working on good, and I hope that’s answer enough.

Peace and love,

Samira

PS I am thankful for my doggy, no one loves me quite like him!

“Can I have a sandwich?!” (Aka my day at the emergency room)

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Recovery is a fickle bitch. Sometimes you are allowed to heal while sometimes you find yourself laid up in complications.

Fickle bitch.

It’s also lonely. Not in the sense that no one is around you, I mean in the days after surgeries the texts and calls wane so you can have your “peace” or “space” or whatever your loving friends hope is the best way to help you, but you also have lots that visit, many that send stuff, and then of course there’s your family that circles you constantly letting your isolation seem confused by the fact that they are always around. It’s lonely in the way that everything you say is analyzed as the words of a sick person, responses are often optimistic promises of a tomorrow that you’re either not ready to hear or find the privilege of disheartening. It’s lonely in the sense that no matter how amazing your friends and family are (MINE ARE AMAZING) there’s only so much that they can do, and so much I can do. So you resign yourself to watching Netflix or a slow walk around the kitchen. Hoping you’re striking the balance the nurses insisted on between rest and movement. It’s lonely because few can relate so you find yourself in constant communication with the people who’ve been to all your surgeries and the brain tumor folks online, sometimes people you’ve never met but often thought of. And it’s just hard. It’s tiresome. It’s lonely. You look at the flowers you’ve been sent and you smile and you read and re read all the nice messages and still struggle to know what to say back and then you sit. And sit. And sit.

Do some work. That’s what I have been telling myself. Ok, when I feel a bit better. I’m busy sitting and struggling to understand my lackluster desire to sit.

Go for a walk, get some fresh air, take the pup. Ok, I will but I am busy watching Netflix, they might expire my show.

My laziness confounds and frustrates me and it’s the healthy people who remind me that any way I recover is ok, and they tell me to take my time and that I deserve to watch a good show. I love those people, they’re everywhere, my family and friends and I love them.

But my entitlement frustrates and angers me, I deserve it?! I don’t deserve anything. I feel bad anytime anyone brings me anything and it’s not right, they have to go back.

Example:
Mom: do you need anything?
Me: some ice and a ginger ale.
Mom returns with a cup of ice and ginger ale.
Me: oh, I meant an ice pack.

My inner monologue: “shut up you entitled brat, she just brought you ginger ale.”

I have to remind myself to accept kindness with kindness and humility. I also remind myself that it’s ok not to be able to hop out of bed and grab your own ice pack, if you could you probably wouldn’t need an ice pack.

And as people return to their daily activities my bitterness (and funniness) grows into a depressing cloud that threatens to crush me if I don’t suspend my disbelief that I am here and embrace the fictional narratives of the latest show I am watching. I become jealous of people doing things, going to work, going out, talking about the Patriots saggy balls, all of it, I want to do that, but I can’t because I am here knee deep in this.

It’s so fucking annoying.

And I get sad and I miss people.

So I’m knee deep in that depressing thought process as I go to put my PJS on Friday night and as I bent over and reached down to pull my pants up a splash of water hits my hand. Bluuuuuuurrrrgggggggg. Nooooooooo! That is not more CSF all up in my business. I’d been ignoring the taste of it down my throat all day anyway, but this proof, it conflated me. My brother had told me not to fixate so I assumed it was just me and went to bed. Throughout the night I woke up choking on the drainage constantly pouring down my throat. If this was a leak it was faster and more aggressive than any other I’d had.

By four am when, without bending over, I found myself drowning in liquid, soaking my pillow coming from my nose I decided I needed help. I called my on call doctor in Arizona.

“Can you come in?” He asked.
“I mean I would but I sort of live in Colorado” I replied.
“You had surgery and a leak repair here already, right?” He replied.
“Yes.” I mumbled.
“And it’s coming out of your nose?” It was almost more of a statement than a question.
“Yes.” I said this as I stroked my hand through the non surgically impacted side of my hair.
“I’m sorry.” He told me.

I’m sorry too.

He told me to go to the ER, I told him my neurosurgeon lived down the street, could I just wait until a more reasonable time and see my neighbor.
He told me to go to the ER.

So I bent over to put my pants on, and there it came, glistening in the light of the early morning, that bitch cousin of Herbert’s, Flo. I cannot express how much I hate her.

My parents got ready in a flash and we all drove to the ER at my neurosurgeons hospital. We got there around 6 am. About five hours in I realized it had been five hours and I implored my parents to get themselves food. An overzealous neurosurgical resident had already told me that I need ENT surgery and that I’m “not a neurosurgical patient anymore.” That made me nervous so I asked him to just call my doctor please. He’s not working? Shoot, call him anyway. I think that call saved me from a needless emergency ENT surgery that would not have fixed the problem and forced me to have my ear taken off again.

Uh, No. No one is taking my ear off again.

But I knew just in case he was right I shouldn’t eat. My parents had some breakfast burritos, awkwardly eating them as I stared at them and waited to hear if some ENT would waltz in like he owned he place and try to jack up my ear again.

I waited and waited, and luckily the guy that told me that an ear surgery would happen made the call he promised to make, and my neurosurgeon stopped that nonsense in its tracks.

But they still wouldn’t let me eat just in case.

By this point my family has found out and my sister and her kids and family have lovingly descended on the ER. They snacked on jerky and power bars and I thought, God what I wouldn’t do for a sandwich.

I asked anyone and everyone who looked mildly like a doctor if I could have a sandwich.

“You’re NPO” everyone told me, nothing by mouth. I told them NPO didn’t make sense it should be NBM. The mumbled something about it being Latin.

Kiss my ass with Latin, I want a sandwich!

Ughhhhhhh.

I had a long MRI with a gruff attendant and my hunger, pain and general anxiety almost caused me to puke in the machine. I missed the guy in Arizona that did my post-op MRI, he was gentle and kind and talked me through it. This lady made me feel all alone in a fun house. I was disoriented and imagining things. It was rough. They then put me back in my ER bed and left me in the hallway not telling me that someone would come get me. I was scared and lonely, and pretty much naked in a basement hallway of a hospital. I thought back to my time in Uganda, to the patients they wouldn’t help, the ones they left in the hallways in beds, forsaken and dehumanized. I knew my privilege and luck would mean someone would come for me and I quietly sent whatever good thoughts I could muster to the men and women I met that day in Africa. And then I sat there in fear reading my tattoos and trying to channel the laughter and fearlessness they are trying to ignite. I did this as the guy in a distant office talked about how good his lunch was.

“I hate it here.” I thought to myself.

They took me up to the neurosciences floor and gave me some Tylenol after some begging, but no sandwiches.

I asked everyone for sandwiches.

No one had sandwiches, but there was talk of shunts and IV fluids and surgeries and consults.

No, no, no.

Not until I have had a sandwich.

Finally I saw a familiar face pop in and my neurosurg had come, from his home, on a weekend, and he reviewed my scans.

As he walked in he looked at my with empathetic eyes. “How are you?”

“I’m ok,” I said through a nervous mix of tears and laughter, “but I could really use a sandwich.”

He laughed and then got down to business explaining he didn’t think a shunt was right (thank god) and telling me where the leak was and that he or Dr. Spetzler could easily fix it, he acknowledged I’d had my fair share of surgeries and it wasn’t right, but he hoped after this one I’d be “okay.”

He told me I could go home from the hospital, and schedule it so it was less of a harrowing ordeal.

Really?! After 20 hours of no food and 12 in the hospital I can just go?

And he said I could have a sandwich.

So I ordered a hospital sandwich as I waited for CT Scans and discharge instructions and even though I couldn’t get my tired jaw around that thing, I have never been more happy to see a sandwich in my whole life.

I ate it like it was my last meal.

Giddy up.

So now I’m home (at my parents house) and I long for my life back, but I wait, for someone to call to tell me my fate, aka when I get to have surgery no. 5.

5th times the charm.

Peace and love,

Samira

PS thanks for all the love.

What happened

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While social media tends to fill in the gaps of the big moments of our lives a few people have asked what happened so I figured I could write it down here for you.

Here’s what happened:

I woke up January 8th with a tinge of nausea and a not quite rested head. I washed myself in a hotel shower with a soap that had more warnings on it than directions. The doctors said it would make me sterile, it would ensure them a “clean canvas.” They treated it like an art project. But it wasn’t, because art projects, if you throw enough passion in them, can’t ever be wrong. This wasn’t that. This was a science project, a wrong cut or stitch can mean failure. You can’t fail art. You can fail science.

I made it to the hospital, took waiting room selfies with my cheering squad, and was ushered back to a lonely room with a dated pattern on the privacy curtain, and a TV too high for me to crane my neck up to see. The nurse told me to put what mattered to me in plastic bag marked “belongings,” and all I could think was, “am I too big for that bag?”

I was a dutiful patient I got marked like a branded cow, poked several times, had long talks with new people’s about intimate parts of my body, the inside of my brain, and slowly fell asleep, this time remembering just vaguely the complexity of the OR.

I woke up not knowing they had started and they told me triumphantly, “you’re ok, they got everything.” I still don’t know whose voice it was but I sort of felt indignant, like, weren’t they going to ask me before ripping MY tumor out of my head?! Then I remembered that was why I was there, begged the nurse for water she wouldn’t give and drifted back to semi-consciousness. I remember it though. Post op is loud and overwhelming and there’s lots of movement, no quiet. No peace. I kept asking to leave there in my semi-conscious state. At one point I opened my eyes to see my parents one on each side of my bed staring down silently. I told them not to watch me sleep, I told them it was too creepy. It made me think of people looking into a coffin, silently, being weirdos.

So I had my two nights in ICU and on day 2, I convinced the nurse to let me put pants on. When I bent over to pull them up, there it was, clear, fast, tasteless liquid pouring from my nose.

Shit.

I told the nurse, like any good repeat brain surgery patient I told her that the drainage combined with my positional headaches could mean a CSF leak. She casually told me she’d let the doctor know and over the day I had MRIs and tests and I was transferred out of the ICU where my nose fountain continued to pour.

Jason kept noting my giant mastoid air cells in my ear that the doctor had mentioned during surgery. I already knew I had giant air cells, it’s an evolutionary feature so I just assumed it meant I was so highly evolved I didn’t need all this doctoring…

As soon as I told the floor nurse of the leak, 2 residents in their official blue scrubs came in and asked if I could make it happen again. Like a trained monkey I tried to comply but looking down hurt and tears were mixing in. They gave me a sterile cup and told me to “catch it.” Totally not a weird thing to do, you know catch brain juice through your nose so I took the cup with me as I struggled to the bathroom and ta-da! When I bent over there it was.

Shit.

I gave the cup to my mom who chased down the residents. I was immediately moved back to the ICU. I didn’t even get any general floor orange sherbert. So frustrating.

They told me they’d put a lumbar drain in and see if they could control the amount coming out via the drain to give the surgical site time to heal. I had had a spinal tap before, the needles are long, the procedure is unpleasant. “Don’t worry, we’ll sedate you” said one doctor with a particularly well manicured beard. The doctor I’d seen most was there and that seemed comforting but I was so scared as they asked me to turn on my side, pulled the curtain shut and all went fuzzy.

For the next 3,4,5 (I’m not really sure, the day’s run together) days I had a tail attached to me. About 8-10 inches of some kind of plastic straw was inside my back taking my CSF to a bag at my side. I couldn’t move unless the drain was off so I couldn’t move most of the time.

I didn’t want more surgery, the Herbert removal had already snaked away so much of my spirit, the pain was severe and my heart was heavy. I kept telling myself if you just follow orders your body will heal, you’ll be fine and you won’t have to have more surgery.

My body never listens.

Bitch.

After several days my nose still leaked and so they took me in for surgery. A repair where they take your ear off, leave it hanging, shove the honeycomb like bones in your inner ear full of fat, then seal it up through your ear canal: Rendering you deaf.

The doc said, “her hearing is negligible in that ear, she won’t notice the difference.” I hate that statement, I notice so much, I notice a lot. Negligible my ass. Now my ear is truly decorative and I have an irrational fear it will fall off at any moment.

I woke up from that surgery with a pressure wrap around my head and with nothing but pain to think of.

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I did not look cute, I was not happy. I had to start peeing in a “commode” by my bed because the walk to the bathroom threw lme into a coughing fit that led to severe pain that led to lots of tears and bad breathing, my nurse rubbed my back and talked me through it. She said, “there will be a time where you can cry and scream about this and you should, but today, right now, you need to keep it together to survive this.”

So I agreed to pee in the commode. I called it my throne and tried to make it seem really classy.

I liked my nurses, one of them was like a girl friend I wish I had met in class in college, the kind of girl I’d get mani pedis with and see funny movies. She was sweet enough to send me a bottle of nailpolish when I complimented hers. One of the others was like an Aunt I never got to know, sweet and strong and always knowing the right answer.

I trudged through, day after day, and finally after my 10th day in the ICU, 10th day of no fresh air, 10th day of windows that lock from the outside, they set me free. I got a bag full of pills, 2 giant gouges in my skull, one new nailpolish, weird hospital lotion, a cut across my belly, one decorative ear, and a whole lot of exhaustion, but I made it.

I know it was harder on some of you than me, keeping watch, worrying, I was prepared for the worst possible outcome, I was prepared not to wake up, not because I wanted that, I want to live, but hey, I had a good run. But you guys, you fought for me. Worrying and waiting, praying and hoping. That’s what’s really hard.

And if you were there, crying for me before I went back, sitting in the waiting room while I slept unknowingly being cut, waiting by the phone, leaving me your sweaters to bring me comfort, sending good luck charms, or checking facebook or Twitter, thank you.

I very seriously mean it when I say that I couldn’t do this without you. This was really hard. And even healing seems like a scary proposition, so thanks. It means a lot.

Now I have to figure out how to live without Herbert. Or perhaps how to live in his memory. Or even how to live under the light he helped shine on me.

Peace and love,

Samira

The Whole Damn Thing

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I’ve been in a foul mood.

I’ll admit that. Until now I’ve been unwilling to admit why. I act like it’s because I am an unwitting victim of a brain tumor and that the universe is out to get me. I don’t really believe that, and that’s not really why, and I really figured that out today. For some time I have known that I have forsaken myself for others. It’s the reason my sister, who selflessly flew red eyes to come visit me, tells me that song from that one cell phone commercial is about me. You know, that song about saying what you want to say. And the thing is, I want to say what I want to say, and in so many spaces in my life I do, but in the emotional, messy, familial, relational spaces where my flawed thinking and stunted communication has led me to this place, I struggle still to articulate what I need, what I want. Part of the reason I can’t articulate it, is because I can’t figure it out. When you spend long enough silencing yourself in favor of others, you stop listening to that little voice in you that screams to be heard. Over time those screams start to feel like whispers and even though they are there, you learn to look past them, your coping strategies transform into habits and you forget slowly who you are and who you want to be.

I know certain things about myself, I am smart, I am driven, I am progressive, I am a feminist, I am a powerful thinker, I am passionate. I want to write, I want to help people, I meet expectations at my job. I know those things. I know I want to feel free, I know I like wind in my hair, I know I have a brain tumor, I know I am okay with that. I know that I love life, being outside, my family, my family of choice. I know those things. I just don’t know how to navigate some things. I know that I have not prioritized my needs, my feelings, my heart for so long. I know fear governs me, and not in the way memes talk about,

Yea ok, but easier said than done...

Yea ok, but easier said than done…

where fear drives you forward, but in the way that it stops you in your tracks. Again, not in all things, in some things fear drives me forward, but in some ways, my rigidity, my insistence to be an oak tree, tall and strong in the wind causes me to lose myself, to see withstanding fear as the goal, as opposed to overcoming it. I don’t want to withstand it, I want to move with it, flow with it, let myself be like the tall grass in the wind, moving and learning and overcoming. Being rigid served me, it got me this far, but I can’t thrive more than I have in this rigidity. Jim Carrey once referred to the people who draw us away from our own shining light, he mentioned the Hollow One, “who clings to your leg and begs, ‘Please don’t leave me behind for I have abandoned myself.’” I had allowed others to cause me to be the Hollow One for myself, and for others. I couldn’t confront my needs or wants, so I begged others to stay in the dirt with me, writhing around until the dirt turns to mud and we slowly get stuck, so deep in the mud we can’t see where we came from and where we are going. I let fear of loss, fear of change, fear of failing govern what I do, what I think and where I go. And when I do this I conceal myself from the people I love most. I am often more myself with total strangers, co-workers, colleagues, acquantances than with the people who spend each day seeking to understand me. Again turning to Jim Carrey, he tells us “Even those who are closest to you and most in love with you; the people you love most in the world can find clarity confronting at times.” I can find clarity confronting at times. And if they see me clearly, will they still like what they see?

I dropped that guard a bit today.

I was so upset about who would be in the waiting room and who wouldn’t and what would they think and how would they feel and how could they survive and will they be sad and will they be angry and what they need and who they are and this and that and everything. I was upset about everything. Everything except my tumor. I was upset about what life should have ended up like. I was upset about a wedding that should’ve happen (or shouldn’t have, I really don’t know), I was upset about not being nice enough, or not being sad enough, or not being excited enough, or not considerate enough, or was I too considerate? Was I too nice? Was I a pushover? I was so busy ripping every word, thought, movement and action apart. I was upset about everything and everyone, and worse of all what everyone might think or feel or be at any moment. I couldn’t manage it. I was angry and upset. The tumor was my excuse to cry all day and not have to explain myself and face myself, but it was not the cause (ok it was a little but not that much). And then, Herbert, with his fat ass, rampant weight loss, and just general bad attitude and temperament, brought me back to my journey. My journey of finding out who I am, where I belong and what my role is in this world. A journey I avoided in favor of clinging to the ideas I thought I had about myself.

I am getting surgery on Thursday, I’ve known that it is coming for almost 6 months. I know that they will drill my skull open. I know the stagnant hospital air will touch my brain. I know my hearing may be worse. I know that my face may go numb. I know that I might feel dizzy. I know that it is going to hurt. I know there will be moments where I lose my resolve. I know there will be moments where my sense of humor carries me through. I know there will be moments where it isn’t enough. I know I will need my family. I know I will rely on them. I know I might get annoyed with them. I know my friends will be there for me. I know my family of choice will be as well. These things I know. I expected those things. I expected that part of Herbert would be gone. I expected it all. With all these expectations I was okay. Then, while I was sitting on a cold leather exam room bed, being overly snooty and emotional, the doctor came in and changed everything.

Him: “So, do you have any questions or concerns?”

Me: “Um, well, der, um, I’m pretty worried about my face, it’s been more numb than it had been and I am worried it won’t work after.”

Him: “You’re right to be worried about your face.”

What?! I didn’t expect this. This local hero, this expert in his field, he was supposed to assuage my overly critical analysis of the potential catastrophe that awaits me.

Me: “What?”

Him: “You’ll probably have some facial droop, you’ll have substantial pain, and it will take time for you to recover from this one.”

Me: “Wait what? You’re just going to trim the tumor down right? Partial resection? You’re not going to take the whole thing out, right?”

Him: “Because of the substantial growth, I think we need to be more aggressive, I’m going to try and take the whole thing out.”

Me: “uhhhhh…..”

The whole damn thing.

He’s taking the whole thing out.

WHAT.

Did I say WHAT yet? Because, WHAT.

I know that I have been posting pics on social media with the hashtag #operationexterminateherbert, but I didn’t know that this would be the final mission in that operation. I suppose it should be heartening, this ordeal might end, and for all intents and purposes that can be really great. But, it may also mean a longer, riskier surgery, more side effects, more possibility for negative outcomes. And Herbert, even before I knew what and who he was to me, he was with me. How do you let go of a part of yourself, even if it is a part of yourself you feel pure scorn for? Will I still be a brain tumor warrior when he’s gone? Will I be a survivor? Will he cease to be a part of my narrative? Will I still fear him? Will I lose my connection to the #btsm community? Will I be alone? Will I have to pave my way without the protective excuse of a brain tumor?

He wants to take the whole damn thing out. I was suddenly very protective of Herbert. Of myself. Of my body. Of my story. What will happen when we’re more “aggresive?” What will I be when this thing that has played a central role is so much of my life just disappears. Will he ever disappear? And if he does, will I go with him? Who will I be, if/when this isn’t a part of me? Who am I now?

Who will I be?

Will I still inspire? Will I still matter without Herbert?

It all came crashing down around me today. The fronts I put up. My solid oak tree facade in the wind. Fighting hard not to let change and fear drive me forward. Trying to dig my heels in even when my whole body wants to let go.

And suddenly, I felt free.

I looked at my family and told them I’d like someone special in the waiting room.

I stopped frowning.

I decided to laugh.

Not because it is funny. It is wholly unfunny. A full tumor resection is not funny. A more aggressive treatment is not funny. Blood draws, MRIs, pre-op testing, all NOT funny.

But I decided to laugh anyway.

I’d been holding on to these perceptions, these masks. I’d been begging all around me, please don’t forsake me as I have forsaken myself. And I realized, with or without Herbert, I have to remake myself after surgery. I have to heal. I have to rebuild. The buildings we build from the rubble and wreckage of disaster rarely look the same as what they were built on, even if they bear a striking resemblance to that which they grew out of. I will still be me, but maybe, if I have to face myself, learn who I am, let my spirit rise above my humanity, I may finally be able to say what I want to say. Maybe I will finally be able to show my fullest truest, flawed but GORGEOUS self to those I love most, and all those I encounter. Maybe I’ll even be able to say what I want to say to myself. Maybe I can be tall grass in the wind, flowing with life, conquering all, while learning and changing all the while.

As Eleanor Roosevelt says, “You gain strength, courage and confidence by every experience in which you really stop to look fear in the face. You are able to say to yourself, ‘I have lived through this horror. I can take the next thing that comes along.’ You must do the thing you think you cannot do.”

So I am confused, I am scared, I am overwhelmed, I am anxious but I am hopeful. And I am still, at least for now, Living with Herbert.

T-minus 1 day until I reemerge from the cocoon, as a beautiful butterfly. Or at very least, a moth.

Peace and Love –

Samira

a

I die on the table

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I am not sure how often people of any age are forced to confront their mortality head on. Perhaps many people go through their entire lives never having to face the fact that until they die, they might die at any given moment. Many people have a vague awareness of it, but barring some catastrophic tragedy, a disease, an accident, the loss of a loved one, war, we mostly go about blissfully unaware of how we will all end up. We do this to get by, because death is seen as a loss, we’re trained to think of it that way, so we distance from it so we can drink the latest cocktail, eat the latest trendy street food brought to you by an expert chef for far more than the street would ever charge for it, or in my case, we push it away to try the latest fashion, chunky necklaces, overly tight jeans, whatever it may be. We push death away, and we react the best we know how. Some are truly self-aware, savoring all those special moments with the people they love, others are flippant adventurers taunting that very monster they pretend doesn’t exist. Some people have no idea what they do to cope because death has never been at their doorstep, so they don’t recognize the ways they are unaware of where we all must end up. So my dealings with my tumor get treated in just a handful of ways, because in this awkward way it forces all of us t think about our lives in a way we just really don’t like to. There are those that laugh with me, at my “gallows humor.” For example:

Me: “If I die first, bury me in these red suede heels, I gotta look good wherever it is that I end up”

A friend: “Okay, and a red dress, or just that red lipstick?”

We make our jokes and then share a chuckle, it’s funny, we know it’s a joke,neither of us intends to die, but boy are those good shoes… There are others who don’t share the gallows humor, you make a joke and they look at you with puppy dog eyes perhaps wondering why it is that you refuse to be solemn and serious in the face of a new surgery. For example:

Friend: “I heard you need another surgery, we’ll be thinking of you. Is it serious? Are you scared?”

Me: “Nah, it’s just another excuse to have a going away party for the little bastard in my head.”

Friend: “Aww, but really, we’ll be thinking of you, we know this is a difficult time. It must be really tough.”

No laughter, no smile, just those sad eyes, staring at you, imploring to see your whole life as a tragedy when you are adament that it is a comedy! Then there are those that think I am just maybe a bit too melodramatic. For example:

Me: “Isn’t this outfit fab?! Seriously though, we all know odds are forever not in my favor, so write down the best outfits for my wake…”

Them: “YOU’RE NOT GOING TO DIE!”

Me: “Eventually I am, let me go out in style!”

Them: “STOP IT, YOU SERIOUSLY KNOW YOU AREN’T GOING TO DIE RIGHT?!?!?!! Oh my god, should we be worried? Do you have a death wish?”

Me: “No shit I’m not going to die, and no you weirdos, I don’t have a death wish, if I did I wouldn’t schedule a surgery to save me from the stupid asshole in my head, but laugh with me!”

They don’t get the joke. I’m not sure I get the joke either, and while I am a bit melodramatic by nature, and I do have a weird, increasingly macabre sense of humor, it is what is getting me through the veritable mess I call my life. Now looking globally, respectively, I am very blessed. I live in an area where I am safe, I have a roof over my head, a new pup to keep me company, food to eat, and all the fashion my heart desires. When we look a little closer, between me and other people that share my basic identity and social markers, it looks more fishy. My almost-marriage collapsed around me and with it one of the most valuable friendships I have ever known began to hang in the balance. The strain and causes of that whole mess led to fractures and strains in all kinds of other places in my life and so as I sit here and write I can feel the palpable resonances of each of the challenging moments of this past year. With all of that was the surprising conclusion that Herbert, fat ass that he’s always been, has gained weight at a rate which warrants a surgery, “as soon as my schedule allows.” So I have to joke. That’s what I have, I have jokes. And retail therapy, and the occasional “meaningful tattoo.” This is not to say that I don’t have AMAZING friends and family circling my heart, always available and there for me. My friends in particular have truly risen to the occasion, and I am grateful, so eternally grateful. It’s just that, at the end of the day, when they each go home to their people, their work, their lives, their problems, they must figure out how to cope with their lives and I must figure out how to cope with mine, and humor, light, that is what I choose. Because the dark, it’s too dark.

I have to be this way because while I have come out of each of my surgeries and I know with full and total confidence I will come out of this one, I die on the table each time. It’s not that my heart stops, it’s not that I actually die, not scientifically anyway, but for those 10+ hours of darkness, with my body naked, strapped to machines, my skull cut open and my brain literally in someone’s hands, my humanity is gone. I am a subject, an object of discovery, an experiment of sorts. A test of the human imagination and the limits of our scientific abilities and advances. But I am not there, I am not in there, not conscious of the movements. I am stranger in there, a delightful and adorable stranger, but a stranger. When I’m there, for me, it is dark. It is a mystery, it is something that happens to me. It doesn’t happen for me, or along side me, or with me. It is darkness. It is profound. It is the closest the living have to death. I die on the table. My life becomes a series of cuts and staples, iron plates and nerve signals. And I don’t really get to choose if I enter that darkness, so until I do, I choose the light, the laughter, the hope of a joke or the nuzzle of a pup. It’s all too much to bear otherwise. You want me to feel the full force of the feelings this past year has thrust on me, and that I have thrust on myself (for I am not a victim of circumstance), I have and I know they are there, lingering in the periphery waiting for me to cave in, but today I get to choose my life, and it’s going to be fucking funny.

I go into surgery, to save my face, my smile, my hearing, my balance, my brainstem, ultimately my life, and my hope, and in order to do that, in a way, I die on the table. I die on a table in order to save my physical body, and regain the humanity that my laughter brings me. I must give my physical self over to someone (hopefully) much smarter than myself, so he can eradicate this things that threaten this face, this smile, this life, and as he takes that away, perhaps my spirit will become whole again, free of worry again. We must all risk our lives, risk our humanity to save ourselves at times, and that my friends can be a very dark place. So until we must be there, let’s look towards the light, and for the love of all things sacred, let’s laugh about it while we can.

Peace and love,

 

Samira

 

The hair is the curtain of the skull

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It was July, I was volunteering at my favorite youth leadership camp and feeling like, for the first week in a long time, I was comfortable in my own skin. The disconnection from my own personal reality and the immersion into the world of teenage leadership and empowerment was fulfilling and freeing.

I had just cut my hair, shedding the monumental weight of the emotional trepidation that had been endemic of my 2014. I felt new, though no one knew that, and I knew it was fleeting as reality loomed on the other side of a cell connection.

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Short Hair, Don’t Care…

One night, late in the evening, as I was just finishing working on what is called a “word of focus” to inspire the youth of America to be impassioned about the Rotary four way test, I saw the wifi kick on on my cellphone that I was using to look up quotes I had saved. Suddenly my voicemail chimed alerting me that people outside of this happy bubble I was in were clambering to get back in. What could it be? Who needs me that doesn’t know I’m away? I saw the Arizona area code and my heart skipped a beat, it was the neurosurgeon. I had had an MRI about a month prior but from my lay analysis of it, there was only marginal growth in the tumor. I figured if it was a problem the doctor in Colorado who’d ordered it would have called me with a grave seriousness in his voice imploring me to make an appointment. He never had so I assumed all was good. As I reasoned away the possible reasons for a midsummer’s call from a neurosurgeon I hit play. At this point I’d gone into my room and was sitting on the ground in the dark, hoping not to wake my roommates. I heard an unfamiliar and perhaps over confident voice. “Hi Samira, this is Dr. ________, we had a chance to review your films with Dr. Spetzler, we are recommending a surgical resection as the tumor has shown growth in multiple MRIs. Let us know if you have any questions.”

Let us know if you have any questions. Let us know…if you have…any questions. Wtf. Yes I have questions you insensitive brain cutter opener! Less than a year prior the last overly confident resident told me I could follow up in a year. This MRI was a fluke, to appease my local doctor who was anxious to radiate my brain. It was just to keep the people who hold my life in their hands happy, to let them know I listen to all the advice all the time. It wouldn’t show anything. I spent that night shaking and sending Jason messages over google hangouts. I couldn’t get on the phone but the wifi would make that darkness a bit less ominous. That was a rough night.

I would like to say there was shock of death or pain or a fear of the loss of my body that was just regaining strength, but really, I was just pissed about my hair cut. (Those more realistic concerns would come later but I had just reinvented my outer persona through my hair in hopes it would heal my mangled heart and all the broken relationships with family and love.) There’s no hiding a gnarly scar with a cute little pixie. There’s no combing it aside or a low pony tail with a hat to mask the pain behind the scar. Ok sure, be a Rihanna-esque badass who wears a shave job and her scars like proud markers of battles won. I would, but let’s be real, I’m not that badass, and it’s easy to say you don’t mind looking ugly when you are a reasonably attractive person not facing a forced quarter shave job, a paralyzed face and a magnet holding your eye shut. I’m just not interested in going through life as a Quasimodo. It’s not brave to do it, it’s circumstance. So perhaps I seem insensitive but I am growing out my hair. I want to bare my scars to the world on my terms. An outward marker of disability can be a beautiful thing and I do believe that our conceptions of normal should be shattered and what it means to be sick or well are just constructs that need to be dismantled. I really believe that. It’s just harder to fight that battle on my own body. Though I won’t stop trying to get my heart, my courage and my activism to catch up with my rational mind that sees an unjust ableist world shirking beautiful bodies from the center of our universes. It’s just hard.

And thus begins Operation Hair Grow Back. I’m not trying to hide behind my hair, I just want to ease the journey a bit. It’s like, we put curtains on the windows to make things feel warm and cozy, to let the sun peek in gradually rather than blind us in its radiance. I have no doubt (ok I have some doubts) that my life will someday return to being radiant, but I can’t face it all at once, it’s too much for this frail heart to bear.

So I am invariably in the awkward growth stage and things are getting really seventies up in here. We’ll call it vintage, it seems less awkward that way.

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It’s getting real 70s up in this haircut… nice side burns..

One day I will open the curtains and let the sun pour in, today, just a sliver will do.

Peace and love,

Samira

Busy

by

I think people often take stock of how I spend my days and see something lazy or wasteful there. I generally (on a low pain or manageable pain day) wake up, work out, putz around getting ready, go to campus and work as hard as I can, come home and then alternate between periods of rest, work, and watching TV. I don’t particularly like to go out during the week and I mostly just want to be in bed at a reasonable time, get my work done and not get a headache. I enjoy those days, especially when they go just right. The precarious balance of my pain to ability ratio is so fragile, even this long after surgery that a good day is one where I lived out my tasks with radiant energy and a cute outfit on. It’s pretty straight forward.

I recently had a friend passive aggressively tell me I’d been avoiding hanging out. This person poked and prodded to come to a reason. What had been done that left me so hidden away and sad? Ok great, thanks for your assumptions. I’m not hiding, I’m working. I’m not avoiding, I’m prioritizing. For the first time in my life I am putting (at least I’m trying to put) my health and my work first and my true friends, they get it, they love me for who I am and I love them the same way. It’s the ones that emotionally take and take and take and forget to be present to return that, they are the ones that can’t seem to accept that I am invested in my work, invested in my life. The way I’ve chosen to live it. I’m just the sum of my failures and the total of my pain to some people. How could anything mean anything when she’s been through so much? I hear them mutter it, as patronizing advice gets passed down. I try to forget those voices as I hear the ones that genuinely love me and patiently help me through those problems and that pain and the ones that will always be there in the most real way. Then, I feel better about how I spend my busy, busy days.

When I close my eyes the world spins. My skin tingles and I have the sense I may be falling through an endless darkness despite the stability of the mattress under my back. My toes feel weightless and so do my bones but my head feels heavy. It’s the vertigo and if you let it, it carries you away with it, drowning you in the endless peril of falling everywhere and no where all at once. It’s draining, scary at times and just plain exhausting. I recently read a blog post about how fatigue is an often overlooked symptom of acoustic neuroma. So when the sky and ground seem to be falling and the world enters this endless blur I turn on the TV, usually something once seen, familiar enough to comfort me and for me to listen to with closed eyes as I imagine the familiar faces perform in my minds eye. I hear people whisper, how sad she watches so much TV, why not jump in the car? Visit a friend? I do visit my friends, I’m actually quite proud of my relationships with a family of choice that is quite supportive here in Boulder, I hope I am supportive of them too. But this isn’t about that, I watch because I choose to. Get a hobby? You say? I have one! It’s watching TV,silly! I watch because I want to. To carry me away for a moment. To give me a break from the swirling of dissertation ideas and the swirling universe of my brain tumor and vertigo. And in those moments, when I watch or work, or live life on my own terms, I’m not how so many choose to see me: resigned to the world of pain, of sadness and just plain avoiding my life. Instead, I’m a powerful force that managed all there was to manage in the day, and chose to escape with a story, that keeps my mind busy so my body can float away on the tenuous wings of my vertigo.

Peace and love,

Samira