I’m goddamn f&%king miserable

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I guess life is about expectations. If you set yourself up for success or failure by believing a certain outcome is imminent, if it doesn’t turn out how you anticipated you end up, well – disappointed. That’s why hope is such a dangerous thing. A beautiful thing, but a dangerous thing. 

Usually when you start your day being the only person in a room full of doctors and nurses without your underwear on, you’re setting yourself up for some kind of disappointment and yet I showed up to the hospital yesterday working on being totally zen. I had listened to enough India Arie to have the song Private Party on repeat in my head. (In fact if you have that song just turn it on now and listen for the rest of this read, because you’re going to need some goddamn zen after this). I happily came to the OUTPATIENT building thinking to myself “Golly gee, after all these brain surgeries it sure will be nice to have an easy one!” I thought this because a week ago I sat in a room full of doctors (undies on that time – only relevant because I think it really helps to minimize the uneasy power dynamic) and they said “Compared to what you’ve done, where you’ve been, this should be so simple, so easy…” And I proudly thought to myself they only know half of my life, the surgeries, I’ve been through enough heartache that THIS, this will be a cakewalk.

So imagine yesterday when I am clearly at the disadvantage being the one naked and strapped to a bed when they drop a bomb on me. “We think you should have a lumbar drain for a night or two, maybe, just maybe.” It was sort of a question, sort of a suggestion, sort of the sound of a new person who was going to be inside my head trying to ease me into the news that the word OUTPATIENT (yes I am yelling that) is a goddamn, f$&king suggestion. Then the good old neurosurgeon came in and I got to negotiating. Fine I’ll give you one night, 24 hours. We settled on Wednesday at noon. Yea, as a terrible negotiator I gave him a whole extra 24 hours right off the bat. 

“We’ll reevaluate on Wednesday then,” he said.

Ok, so this sucks, but I can manage 2 days on a drain. I can manage that. Then they pull it and I get the heck out of here. Then the peanut gallery (read: friends and family) had to go and care about me and decide that they would ask how long drains traditionally stay in. 72 hours is the answer, then they clamp it, have you walk around for a day without it and then decide if they will pull it and send you home.

I was screaming  in my head “I AM NOT A TRADITIONAL PERSON! I AM NOT A TRADITIONAL WOMAN! I AM NOT A TRADITIONAL PATIENT. I just want my life back, give it back to me!” I was pleading in my head. I need things to be there when I get back, I need a job and a home and life to go back to or else what the hell am I supposed to dangerously hope for. I felt those things so urgently, I felt them slipping away from me.

“It gives you the best chance of this working,” said the new, young, dashing doctor.

Ok new guy, that’s all fine and good but you are crapping all over my zen. And still, even though he took a steaming dump on my zen, I gave him advice on how to get pumped (i.e. march through the halls singing All I do is win and then dropping a mic as he rolled into the OR) which I don’t think he took.

The neurosurgeon who I greatly admire and trust looked at me with those sad empathetic eyes of a man who truly cares but just can’t offer a better answer. I saw the truth of it in his face and began to cry out of my one eye that cries, while my monster eye that doesn’t seem to fatigue or tear or anything looked on confused about what the other eye was so down about.

I got pissed at my family for caring, which I know is unfair. I told the anestesiologist to knock me out quick because the attitude was going “quickly and efficiently downhill.” The tension between the various people in my cheering crowd appeared to be growing  and I felt like I somewhat was able to lean on this woman who was about to knock me out. She was so nice to me, she got me, she shared with me as people tried and tried and tried to get IVs in my tired veins, and she is a bad ass woman paving the way for more bad ass female doctors to come after her. Though I may not have been able to show it I was full of gratitude at the way my friends and family did try to jump to the occasion even offering to go to my jobs themselves so I wouldn’t disappoint any of the people I work for at my multitude of jobs that I deeply admire and respect. I deeply admire and respect my friends and family for trying to to help in that way and with all their words of comfort, though I was not in a space to hear them. And I love them for wanting me to sacrifice to heal. I’m just tired, that’s all.

So here I sit, on total bed rest. It’s a hoot you should try it. I get to hoist myself in a bed pan and pee all over myself. If I try to sit up or lay down an alarm goes off and techs and nurses come running. I get shots in my belly every 4-6 hours to keep my blood thin and pain killers every 4 hours to keep me sedate and from feeling the drain going 10 inches up my back. Or the incision going two inches into my belly.  I have a sore throat to defeat all sore throats and my right nostril constantly bleeds. If I sit up at all pain shoots up and through my body hitting hard in the face. 

They told me the surgery wouldnt be hard. But I should have told them that having a lumbar drain is not easy. They do seem to know that, teams of residents come in and show me kindness and empathy and I know I’ll get through this.

It could be way worse. I’m not dying, I am surrounded by blessings and love and light. But the disappointment of a bait and switch is sitting quietly on my heart. It’s going to have to sit there for a moment while I process it.

If I’ve learned anything through all of this, healing is time.

I need some time.

Yesterday before I came to the hospital I watched Tracy Morgan, who went through a horrible and unimaginable trauma, give his first interview. He was raw and honest and talked about being mad and throwing things and then, he talked about beginning to get past that. And he promised that when he was back to 100% he would make us laugh again. I rarely let myself just sit with my anger the way he did. So I will take inspiration from his hope and I will have some too.

Right now I am pretty miserable in my physical body. But this dangerous amount of hope, a little India Arie, and all the love I am lucky to have showering down on me will keep my heart afloat. Sometimes our haggard minds, though tired, will pull our bruised and battered bodies out of the disappointment and into the light. 

Peace and love,

Samira

Also: this is what I look like right now… ATTRACTIVE.

You cant tell, but i’m actually smiling under my gauze stache…

Purely Informational

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WARNING: If you’re here for a moment of uplift, inspiring lesson, casual amount of snark, hijinks or hilarity, a heart to heart convo between my typing and your computer screen, some love, some anger, some anything but apathy, you’re in the wrong place.

This post is just an update. All 4 of you consistent readers will be happy to know that as I already knew my CSF leak is still persistent, active and puzzling to neurosurgeons and ENTs everywhere. Oh well, such is life. So craniotomy no. 6? That was purely bonus. Ok, so, Monday, yes like this Monday, I will go back in. (This means I will go back into the hospital and they will go back into my head). Given the multiple attempts to rebuild the honeycomb like part of my skull that just didn’t quite get there, they’re going to stop cutting into my ears and head and go up my nose (with a rubber hose!). JK, I just wanted to say that, the nose part is accurate, rubber hose part, I really don’t know, I cannot confirm or deny. So anyway, they are going up my nose mummification style and going to try to sew my Eustachian tube shut.

Sounds fun, right?! 

I mean, yea.

So that’s happening, if that doesn’t take then it’s shunt city up in here (highly undesirable solution to a highly undesirable problem that while annoying will not snake away whatever tiny shards of my spirit are left). 

So that’s Monday, with any luck I will be back at work by Tuesday. Why? Because why not. Also because I have a freaking dissertation to write and while it seems arbitrary and meaningless to devote my time to, it’s what I’ve got and I have to have something if I am to survive this all. Plus, I have no other practical skills.

Also, full disclosure, I had a donut for breakfast today. 

And yesterday.

See, purely informational.

Oh yea, about Herbert, we haven’t dealt with him since January, one doc says he thinks he got him all, the other thinks we need to radiate his residue because he will grow. We can worry about that later and really won’t know until a month or so out when we MRI my tired little head again. CLIFFHANGER! (Not really).

As always peace and love,

Samira

#nomoflo 

Update on a piss poor attitude and a desire to be a bit less haggard than I am

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It was my first morning home from the hospital that I noticed it. A barely there drop of spinal fluid that shot out as I exhaled and sat up. “Aw crap” I thought to myself as I rummaged through the bag of undies and post-surgical instructions I had brought back from the hospital with me. I found the paper with the nurse practitioners email and through bleary crusty, mildly drugged eyes told her the leak was there again. I signed my email “Leaky McLeaksAlot.” She LOLed at that one.

Between the two NPs and the neurosurg they hoped it was “postoperative fluid” and I humored them even as they moved my post-op appointment up by a week and insisted on a repeat CT scan. Those are not the actions of a group off docs worries about nothing, but hey, they want to have hope, who am I to squash it? The leak has gotten progressively worse since I emailed them and franky my face is raw from wiping CSF away. I’ve run out of leaky faucet jokes and frankly have spent several of the last few days crying and ranting about how I should just accept me for me and I feel like I am trying to convince myself as much as I am trying to convince everyone else. But it’s not the physical I am having trouble accepting. I’m totally okay with having a messed up body, though I’ll admit I am tired. It’s the emotional that’s thrown me. I have no idea where I stand emotionally anymore, my identity is a mixed bag of contradictions, control, power, insecurity and fear. I don’t know who I will be and with who and how and for how long and it’s goddamn scary.

I have always been a person who thrives on control, on knowledge, on being able to confidently speak to a situation. Losing physical ability robs you of the opportunities to do so and leaves you a bit listless. But I realized something tonight while I sat on the couch and watched my dad tear up at America’s Got Talent of all things. I’ve got love. I’ve got family love. I’ve got family of choice love. I have friend love. I have contradictory love, I have problematic love, I have complicated love, I have love that I hate and love that I love and love that scares me and if I can get out of my own way for a moment I even have self love. 

That’s not easier than control. But it’s more beautiful. 

So here it is, I am “recovering” but I’m not really because I’m leaking, but my pain is under control and I’ve gotten to do fabulous things with my family and see my friends and share in love. And I’ve even gotten to cry my little eyes out. So I am a bit haggard, a bit grumpy, and totally out of control, but I am deeply and profoundly in love with all of you. 

Peace and love,

Samira

It’s happening

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I woke up this morning with a pit in my stomach. It could have been the chicken pot pie I ate late last night but it felt more like that pit you get in your stomach before you have to do something big. Whether you are doing something good or bad, your body seems to be preparing for the fact that something is happening – you sweat, your stomach is in knots, the anticipation is killing you. I used to get this way before big flights across the world. I’d wake up nervously but with an excitement that kept the discomfort of nerves at bay just a little bit. This is not quite that, where there had been excitement I now feel dread. I know what the pit is for, I am getting surgery tomorrow to again fix a problem several other surgeries just like this one did not fix, and like a bad remake of the movie Groundhogs Day, I seem to be repeating the same series of events over and over and over again.

It goes like this: surgery, pain, start to heal, repeat. There are of course other steps that vary each time, phone calls from doctors, follow up visits, MRIs, people crying at your bedside, people laughing at your bedside, a solid amount of nausea. It all depends but you get the point.

Despite the dread that this surgery is just me spinning my wheels avoiding a shunt, and the dread that it will fail like many before it, I am not afraid of dying, of suffering, of pain. I see them now as a part of what is. This is my life, good bad or ugly, this is my life. It’s mine, it’s a beautiful mess, it’s my beautiful mess. This is my truth, and it is not the truth of someone who is sick who will feel differently when she heals as is the insinuation I often get from many people. This is the truth of someone who has seen the hope, seen the dread, and chooses neither. This is the truth of someone who just chooses life.

And boy did I live this week.

I didn’t embark on some grand adventure that I could catalogue on a Buzzfeed list that would inspire hope of the life unlived. I didn’t travel more or eat something crazy or go somewhere I’d never seen. I worked hard, I saw family and friends, I worked out, I had happy hour, I watched TV, I walked the dogs, I let them drag me across the backyard, I napped like it was my job, I laughed, I cried, I got angry, I had ice cream, I smelled flowers, I worked more, I went to RYLA events, and lunch meetings, I was busy. I lived my life, the one I have built and fought for and I filled the time and space with people and things and life. 

I joked wih a few folks yesterday that on the very off chance that my body gives up during surgery (not gonna happen), they could write on my tombstone “She finished her work (but not her dissertation)” and yea, it would likely be the funniest headstone in the row. It’s more than that though, in reality, what they could write under that, no matter when I leave my body to take my spirit elsewhere is: She lived. 

See you on the other side of craniotomy number 6. Flo is going down (maybe).

#nomoflo

Peace and love,

Samira

What is there to say

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For a while I was writing every day, exploring the inner most avenues of my heart as I navigated a path towards healing (whatever that means). It was something that kept me going, to write it down was to begin to deal with the ongoing ordeal of living with Herbert, or Flo, or really, any chronic or persistent pain. Then I fell out of it. I didn’t want to know how I was feeling, I certainly didn’t want to explain that to any one else. I didn’t want to invite prying questions from myself or from others. Most of all I was so tired of every trip on a sidewalk and hiccup or clumsy moment or misspeak being attributed to what people seemed to see as my condition. 

Example: I make a joke but I stumble over a word. My friends: “there’s that brain tumor again!”

I try not to take offense. I quietly try to muster a smile and let them know that while this chapter of my life has certainly changed me, the tumor had no cognitive effects. Yes I am fatigued, yes I lose my balance, but I can think and I can speak. But even if I couldn’t, it wouldn’t be for you to say. I remind myself this is people’s way of coping with what they do not understand. I note that if I really couldn’t speak they perhaps would not feel so comfortable poking fun. What’s interesting is it isn’t one or two people who gesture toward my life this way, it’s most people.

They see my life as a diagnosis, as a condition. My condition. They ask me what I will do when it’s over, when I am “healthy.” Hmmm, probably this, I think. I’m not some victim of circumstance, I had the privilege of options and I chose what I do. “It’s not a condition!” I want to scream, I want to tell everyone. My condition is being alive, so is yours! It’s full of pitfalls and challenges but joy and hope. I want to tell them to allow me to shed the constructs of what they know of disease, of life, of love. Don’t ask me what is failing asking me what is thriving! It is not your able body pitted against my disabled body. Don’t force me into a construct you understand. I will try not to do the same to you. I will try to see you in the same radiant and complicated intersections of all your identities. 

I can’t seem to muster the strength to say anything. I fear that my friendship will fatigue them. I fear people are tired of hearing that Flo won’t heal and so I am facing the very serious decision of a shunt versus craniotomy number 6. I fear being dismissed and forgotten as just that sick friend we had that one time. I fear that people will want to know too. I fear they won’t want to know where my heart is or what I need from them to enable my healing and my happiness, rather they want cold clinical details, the kind they can share at the next dinner party when they’ve run out of anecdotes of their own. I fear I’ve become the interesting passing detail of their day or the drama they thrive on.

“She named it…” They will say. ” Yea, she named the tumor…”

“She’s getting another surgery…. Yea… a shunt… Oh you don’t know what a shunt is?!” They will say acting as though they are narrating the plot of a medical drama. Their speech will stink of the phenomenon of a lot of people speaking a little bit about a lot of things they know just passing information about.

I know how it works because we all do it. I do it. Everyone does it. We unknowingly or perhaps unwittingly co-opt people’s narratives of pain and suffering in an attempt to understand and show empathy. We want to honor that testimony but we end up separating ourselves from them without cause or reason. It’s a way of coping and dealing. It helps us keep from crying. Then before we know it we become the categories people use to represent us because when who you are fades so far behind your representation you become invisible. We mean to show them honor but we flippantly cast them aside when things get busy and we must fall back to our routines. 

Then if you are the one with a struggle, You become your condition. “Do you remember so and so from way back when? They have such and such…” There stories are our conversation pieces. Even when your condition is simply being alive you get pigeon holed into what happened to you. I do it to myself, you do it to yourself, and we do it to each other. We put our lives in clean categories then we clamour to fit those categories. But here’s the thing, I don’t want to erase my struggles or misfit identities and blur us all into a world of false sameness, I just want to be honored for who I am where I stand, in all my complexity. I would assume you want that too. I don’t want to hear that my brain tumor is “the best excuse” ever, I don’t want to have an excuse for who I am and what I am capable of because of some definition of illness that gets written over my body. I don’t need an excuse because while there is so much ailing me, there is NOTHING wrong with me.

So what else is there to say? I certainly can’t say all that in every conversation. So I don’t, I laugh and I joke and I live in this world that erases our nuance and fits us into categories. And sometimes I enjoy it, but then I go home to the space where I am unapologetically complicated and vibrant and my condition is no condition at all, I am simply alive. 

Surgery is May 18th. Get your countdown clocks ready. And thanks for standing by me even when you couldn’t understand me.

I just don’t know what else to say.

Also I am just going to leave this video here:

Say what you need to say!
Peace and love,

Samira

Imagine

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My thoughts are meandering, so bear that in mind, this post discreetly calls upon so much of what happens in my days without detail or justice to any one moment.

It is often those things that we imagine that get us through those things that we are actually facing. For example when I have a headache, I imagine that  each breath going into my body is a healing wave and each rush of that wave outward carries all that might pollute me out with it. When I try to get through tough exercise that my body fights against I imagine worse pain that I have withstood during surgeries and the like. When feeling lonely and broken hearted I imagine my love is not lost, just on a business trip. When faced with conflict at home or work I imagine birds chirping in a field of flowers as I lay in the grass and feel the warmth of the sun on me, or perhaps throwing a ball with my dogs at the beach (in that little image I am also somehow a tall, white, blond woman in classy knit sweaters which is a bit problematic when we think of the constructedness of racial norms but we’ll leave that aside for now, also, I am landlocked so….). When I think of someone whose passed away (death has been all to near my loved ones lately) I imagine them alive and full of life, at their best, laughing. 

I imagine the best to get through the worst and I remember survival to get through pain. So it’s a bit confounding when all those images blur together and they stop carrying me forward. The other day in Pure Barre as my body failed me I remember telling myself, “think of what you survived and don’t stop now,” I tried to imagine those long MRIs and hospital stays and the strength it took to get through them, the painful days, the long nights.  It wasn’t working, my memory betrayed me, those days not more than 7 weeks ago pushed so far into the back of my mind, conjuring them was impossible. When hearing of the death of a loved one last night I sat there in disbelief hearing that laugh, seeing that smile as it was the last time I was in its warmth. I imagined a phone call, “it was all a mistake, they are still with us,” it would say, I imagined life in the wake of death. This morning when I woke those imaginings failed me. The reality set in.  I couldn’t conjure any images in my minds eye to distract or rewire those pain signals in my mind. I couldn’t replace the negative with positive. 

I used to imagine those grassy fields and flowers and beaches when things were loud in my little Boulder condo, imagining that outside my door was not a drunk undergrad taking a pee, rather it was a beautiful white picket fence backing to a beautiful rice field on Lake Bunyoni in Africa. I imagined so much into that space that when I plunk back to reality, with pee splashing in my face I can’t help but be a tiny bit heartbroken at the present.

I know, it sounds ungrateful, it sounds privileged and like someone who is fundamentally spoiled. It feels that way too. As a person who often finds reality so confounding I disappear in escape, my own reality that is truly pretty charmed in many ways, is often too much for me. I vasillate between the notion that perspective will save me and the opposite side of that coin that others’ suffering should not be used to minimize my own, it is a disservice to the world. My intellectual and analytical mind breaks down every thought in a complex critique that keeps me firmly planted in the present while my mind and heart wish for that imagination to kick in. 

Coping is weird, right?! Healing is a journey, a long ass one. 

I can’t imagine my way out of every problem. I can’t breath through every bit of pain. So I sit here, firmly grounded in all that is actually happening, and have faith in all that I am and all that I’ve learned, with hope in my heart and intellect in my mind, knowing I will bring imagination and reality back together again and build this life into all it can truly be. 

Peace and love,

Samira

Calamities

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Today is officially the worst day ever. You were thinking the same thing?! I know, right? It’s the first Monday after the manipulative time gods in the government decided to jack up my already f-ed sleep schedule for whatever reason. And yes, I feel personally targeted and yes, I am personally annoyed.

No, you’re being dramatic.

I, woman who has had my skull hacked open five times, have great perspective on the worst day ever, because I’ve lived it, and I have decided to firmly put today in that category because a) I can, b) I am so sleepy.

You see, there are a variety of calamities that befall you when you’ve had your body go through what mine has. I used to call them “brain tumor moments,” but now that I am not entirely sure what is growing in my head and how fast and how gross it is, I feel like they are just tiny calamities. They all pile up and by the end of the day I am an exhausted heap of a human being who has lived her whole life like Dick Van Dyke in the intro to his old TV show: All physical comedy, all the time.

For example:

I stretch too hard in the morning. Yea, you heard me right, that weird turtle coming out of his shell move we do in the morning renders me in writhing pain. Even the dog wonders why suddenly pillows and blankets are flying off the bed as I try to scrape fat and bone cement out of my ear. Then I wake up long enough to realize, “ut-oh! It’s just your head,” and I cool my jets.

I stand up too fast after eating, the head rush that befalls most people causes me to fly back into my chair, usually missing. Whoops! The first calamity of the day is usually met with a happy little “oopsy poopsy!” As though I am trying to make a tiny baby feel better about falling on their rear end. It hurts usually but I smile and laugh and talk about how maybe the fall will break down my cellulite upon landing. Seriously, is that a thing??

I go to put the dog on his leash, the forward motion causes a tiny amount of CSF to leak out. It drips into the dog’s eye. He looks at me in discomfort. “You’re welcome,” I say, ” it’s dry in Colorado, you can use the moisture.” By this point (usually about 9 am) I have lost the cutesy tootsy thing and it’s all blunt and straightforward, like an awkward comedian delivering a dry punch line. I wait for the laugh track. Dusty (the dog) looks at me like I am a total dick. “Takes one to know one,” I think to myself.

I go to drink the disgusting combination of healthy crap I force down my gullet and get dizzy mid-chug and spit it all out into the sink. The coughing and gagging causes my neck to seize up and my intercranial pressure to increase. I sit on the ground and scooch my way to the freezer for an ice pack. I sit on the ground waiting for the ice to numb my pain while Dusty smells my scar. I’ve gone from dry punch line lady to gigantic raging bitch, or alternately sometimes I opt for cry baby.

That’s usually just the morning. Then it happens all day, tiny calamity after tiny calamity that usually sends me into delirium by 3 pm. I do my best and I laugh it off and so it is fine, super awkward, but totally fine. 

That awkwardness? It’s my invisible marker of ability lost. It’s my battle cry no one hears, because health is a solitary battle. Last night while perusing Facebook, I saw an article about Invisible Disability, it began to touch on notions of coming out as disabled or passing as abled. It struck me because I don’t have to come out as anything and I don’t have to pass as anything (I’ve got a lot of great material on this from feminist disability studies and crip theory if you’re so inclined), because while I don’t fit the map of ability we all are told we need to navigate, I am uniquely me, and I don’t feel that at this point that needs to be changed or fixed, though in naming the invisible parts of myself, the reasons behind those silly calamities, I gain a great amount of power.

But then, alas, someone conspires to take the time it should be and make it into a time it isn’t yet by deciding a good chunk of the country needs to be in an arbitrary time machine and I wake up tired, and a little perturbed and not quite ready to face all the calamities that will befall me. So, while most days my morning calamities start with “whoopsy daisies” and “aw shuckses,” today I fully expect a lot of f-bombs.

I’ll probably be happier about it when it’s not dark at 3 pm and I can actually stay awake past 4.

Peace and love and day dreams of naps,

Samira

What’ll I do

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There’s an episode of This American Life that features David Rakoff just before he died (here’s a link).  It was a live, theatrical version of the radio show in which the witty author, in his trademark biting tongue and powerful vocabulary, hilariously explained how he got by doing basic tasks after cancer took the use of one of his arms. I have mentioned this clip before because it is powerful. In it he describes dreaming of dancing, of ability that eludes him. He describes what disease has taken and what dreams return to him. He talks about the freedom of bodies flowing and dancing in the wind. He talks about how in dreams anything is possible.

Then, he dances.

He dances to Nat King Cole’s version of the song “What’ll I Do.” It’s a sad song lamenting that powerful feeling of emptiness that often strikes when love is lost. For Rakoff though, it seemed to mean something else. It seemed to be about a personal loss of another kind. I love that song, I love the melody and the soothing, empathetic voice. I can’t hear it without seeing David Rakoff moving so beautifully. I also can’t hear it without seeing myself, without putting myself and my loss of perfect health in those lyrics. I used to just sit and listen to it, on repeat, over and over until my phone died. I’d just listen, hoping by the end he’d answer the question. What will I do when all I know and love changes? What will I do without you, but even more pressing, without part of me?

The other day I got a beautiful email from an old friend from college in which she shared an Alabama Shakes song with me called “Hold On.” She told me she was jamming out to it and thinking of me, and being that I haven’t “jammed out” in quite some time I thought if she cared enough to send this to me I better make good use of it. I played it and began to dance around my room. I began to feel my body move in a way it hadn’t in quite some time. I slowly became less reserved thinking to myself that the dog probably wouldn’t judge my dancing that hard. I did catch my dancing in the mirror, it was a bit rough. 

I played the song a few times and then let the shuffle mode on the phone take over.

Within seconds the melody changed. There it was, that familiar piano music leading me into a comforting voice.

What’ll I do when you are far away, and I’m so blue…

My movements became less frenetic, the smooth melody seeming to trigger the muscle memory in a body that had changed. I swayed with his voice, thinking not of sadness but of joy.

What’ll I do when you are gone away?

Everything in my life as of late has changed, shifting powerfully and yet, though all of who I was and who I know has changed or perhaps gone away, it has opened me up to reinvent.  I can be new, I can be brave, I can be me.

I can be happy, or at very least I can be my most authentic self, approximating something like happiness, flowing free in the moment while Nat King Cole sings my troubles away.

I don’t know what I’ll do with just dreams of who I used to be and potential ideas of where I’ll land. I don’t know. I do know that I have stopped searching those tender lyrics for the answer. I also know that if you need me, I’ll be dancing my way through.

Peace and love,

Samira

Withstand

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It hurt. I woke up, throbbing, beating, pounding.

“Is it my heart?” I wondered to myself as fatigue took over my limbs. “It’s in my head, I can feel my heartbeat in my head. Wait, no, can I?”

I suddenly remembered where I was, who I am.

“Ah fudge,” I thought to myself, “it’s all the goddamned brain surgeries!”

I tried to breathe through the pain, trying various techniques and exercises. This will pass. It must pass. This is just a moment, fleeting in its power, tricking us with its glory and its force. This will pass.

The pain deepened, stealing my breath, catching my tears. Reluctantly I rolled to one side reaching in the dark for whatever pills may fall into my hands. I took the lightest dose of Tylenol. My hands trembled as I clutched my water bottle.

This will pass.

“Visualize it. The breath going in bring relief, washing it over your third eye center, down towards the sacrum; exhale let the pain out.” Healing in, pain out. It was my mantra. This will pass. I can be stronger than this.

That was Friday night. I spent Saturday and Sunday in a Valium and Advil induced haze, lucky to have my best friend bring me cookies and sandwiches, clean my home, and then to have my parents force me out of the house. Through all of it I was wobbly, I was tired, I was scared. Flo was proving to me that she is a force to be reckoned with and with each drop of CSF I had to fight harder to maintain my spirit, to remember that every breath in is healing coming in, and pain going out. I struggled to reckon a bad day with the grand scheme of things. I struggled to remember that tomorrow will be better.

“I take one step forward and ten steps back.” I said, hoping someone would tell me I was wrong. The only person who can tell me otherwise is me. There are no steps back, even the pain moves us forward, though it may blind us as it does.

This will pass.

I spent the weekend doing the best I could, working where possible, napping where possible, wiping the CSF off my face when necessary. I willed my body to heal, but forgave it for not always being ready.

Tig Notaro makes a great joke about what we can withstand. She makes use of that trite saying, “God never gives you more than you can handle” and flips it on its head. She, having been dealt a pretty tough hand herself (a cancer survivor and general bad ass), imagines God, looking down, telling the angels to trust him, she can take more. The angels ask God, “but, why?!” And yet, despite it all, she withstood. (If you haven’t heard her comedy, it’s so good!)

As my heart beat through my head and my body shuddered in pain, I tried to quiet my mind. I tried to remember all that I had withstood. With every breath I imagined myself standing up out of that hospital bed each time, the pain it caused, the resolve it took. I imagined those brutal MRIs that came post-op and made no regard for my open wounds and my tinnitus. I remembered walking with a pressure bandage. I remembered what I heard with the quick swish of a curtain close and a needle penetrating my back, I remembered IVs, and cuts, and scars, and battle. I remembered that I can withstand battle. My body can fight. There have been times my spirit fails but it always renews (in part because of a tenacious will to live, but more importantly because of the people around me whom I love very much).

I have come a long way since Friday night, working, running errands, and even going to Pure Barre today. With every step forward, as I felt the beating in my ear, smelled the icy hot on my back, and breathed through the pain, I visualized all I had withstood. With every movement I saw my body persevering all those times.

“If you could do all that crazy shit,” I tell myself, “then you can do this.” And then, I do my best, being gracious to myself when I fail or fall, and being proud when I withstand so much, all the while knowing, today may hurt, tomorrow may hurt too.

This will pass. I will withstand so much.

Maybe we are not given more than we can handle, but maybe we are. Maybe we take on more than we can handle. Nothing is ever simply given, that’s not how the universe works. However it does work, one thing I have learned is that survival, health, healing, it’s not about what you can handle, it is about what you are forced to withstand, and the grace with which you do it.

Peace and Love,

Samira

Live like you are living

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There’s a phrase I have a conflicted relationship with. There’s songs about it, memes about it, stories about it, all with one motto: “Live like you were dying.” It’s some kind of an attempt to get us to live in the present, to conquer fear, to jump off that cliff we’ve never known we’ve always wanted to jump off of. In sentiment it makes a lot of sense.In practicality dying sucks and is scary and is paralyzing. Soooo…..

Live like you are dying.

I don’t get it.

Shouldn’t it be live like you are living?

The thing is, this phrase, this nice little bundled up phrase that is meant to embody so much and get us to stop procrastinating in our lives is a contradiction in terms. We are sold death as something fearful, terrifying, end of days. Unless, we are religious and/or watched Touched by an Angel, then we are sold death as something where a handsome angel takes you away to a place of peace and beauty (DISCLOSURE: I had a super big crush on the angel of death, no I don’t know what that says about me, yes, I am terrified to find out). Either way, death is the end of this life. Live like you have no time left, I get that.  Live like you need to show love in this life. I get that. But live like you are dying? Living and dying, as they’ve been constructed for us by the cultures we live in, they can’t co-exist.

How do I know?

For weeks I lived like I was dying. Most doctors will tell you the chances I would actually die were slim, and that’s great, but it was the fear of death and the lack of will to live that for me, constituted death. It was the loss of hope. I lived like a person fearing and anticipating worst case scenarios, suffering and putting a strain on the people surrounding me that I love.

I lived like someone who was dying. And I don’t have to cliff dive, or bungee jump (already done that – super cool, never regretted it, honored to have done it, super gives you a headache), or travel the world to value your time. I lived like someone who was dying meaning I sat in fear of death, curled up in fear of what might happen, avoiding pain, not taking risk, shoring myself up against the potential dangers and pain of life because the stakes were too high. I was careful. I was safe. I wasn’t happy, and I wasn’t well, and that feeling ebbs and flows with the tenor of the days, but I hid away from anything and everything. I lived like I was dying, because I was so scared to lose my life.

Part of it is just circumstance. My face hurts a lot and so does my head, and loud noises can shatter my spirit in the way they ignite shots of pain across my body. Part of it is that feeling that if I stay in the safety of my home, not allowing anything to pierce my armor, I won’t die, but less dramatically, I won’t hurt physically, and I won’t have to face, you know, anything ever. Living like you are dying? It’s not living.

Until you get to that point where there is nothing left to lose, which is different from dying, just trust me. You’ve floundered in all things and so what the the hell difference does it make if you try and fail? It’s worth trying. It’s not rock bottom, it’s just a point of quiet resignation that eventually leads to a beautiful acceptance of who you are in the present moment. But it doesn’t accompany this knowledge that you have limited time and you must prioritize and rationalize decisions. It accompanies a pursuit of passion in life. A pursuit of happiness in life. And happiness, while it can come in bold and drastic steps and leaps (as quoted in The Mindy Project as coming from Michelle Kwan’s biography), can also come in small moments.

Last night I went to a Pure Barre class for the first time in a long time. I wasn’t sure I’d make it. For me it was a measured risk to lead to living better, to living more happily, to living my most true self. I know that’s a lot to put on a one hour workout, but that’s what it was for me. It wasn’t a calculation based on an assumption of what I would do if I never lived another day, it was a calculation of what I loved and what would enable me to live in a moment of something I loved.It was something that makes me happy in life, it was something that makes me feel strong, capable, alive. It was small in the scheme of things, but for me it was a triumph. It was something I didn’t’ think I could do. It didn’t change the world (and while I would, in this life, like to change the world) it changed me, it changed the people I encountered and it mattered for that. It took guts for me.

eleanor-roosevelt-quote-2-copy

So I went, and I made it through, and I am sore as hell, and for an hour I felt not like I was living like I was dying. I was living like I loved. I was living my passions. I was living my life and I was living what made me happy. Today, as I sit here with sore muscles and a swollen jaw line from perhaps my busiest day, I sit in pleasure and happiness knowing that I live like I have a life worth living, no matter if it lasts forever or lasts one day. I don’t need death to pursue life. I need life to pursue life. Even though that makes me scared as hell. Even if that means I sit on the couch today, in quiet contemplation.

The thing is, when I did/do live like I was/am dying, and when I was perhaps at real risk of dying, all I cared about was not goals, not success, not fame, not glamour, not achievement. It was love. I cared about making sure that the people I love, knew to the core of their spirit that I love them. In that sense living like you are dying is a real gift. That being said, I will strive to love those people as good, if not better, as I am living. I cared about laughter, I cared about accountability. I just wanted to make my family and family of choice laugh, and I wanted to make sure they were okay, in that moment, whether we had more moments or not. I have decided I will take time on my side as a gift, even if it forsakes me and takes me from this life tomorrow and I will live in THIS MOMENT. Knowing that if I do, each moment will lead to a lifetime of bliss, even once death comes knocking.

Someone I respect and admire once told me that love is “beautiful creativity.” What I have discovered is that in that love, that is where life is found, and I am surrounded by it. So live this life, in love and in light and in hope.

How’s that for a brain tumor lesson?! (DISCLOSURE: I think it’s just decent, but it’s a work in progress, like all things…)

Peace and love,

Samira