Gone dark

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I haven’t written anything here in so long. I haven’t felt the need or desire to explain myself, make myself available to scrutiny, to expose myself so that others may weigh in, tell me what to do or how to be. It’s not that I don’t like or appreciate the advice, help and support, it’s just that when you’re already full of emotions from the highs and lows of a tumultuous summer, there’s no room for more. There’s no room for praise, pity, advice, hope, fear, love, hate. Those things have already taken you over and they fight one another on the canvas of your mind and body and you? You freeze. Stuck in the quicksand of expectations of yourself and others. Assumptions of life and health and the constant question whether you can shirk those expectations and still survive. And if you survive can you thrive?

I’m stuck in the support, the prayers, the fear, the expectations, the unsolicited advice. There’s no appropriate response to everyone hoping for a miracle for you. Sometimes I wonder how I became someone others found either worthy of or in need of miracles. It’s a great honor but a lot of pressure and I can’t possible be that bad off, can I? Surely our miracles are better spent, I think to myself, I’ll survive anyway, no? I guess it can’t hurt. It’s just I’m so full of it all, it’s spilling over and so outside of my reach and my depth.

I’m full of love and joy from a summer of volunteer work. Meeting people where they stand and helping them take a tiny step in the direction of their unknown dreams. It’s fulfilling, it’s magical, it’s helpful. I’m full of gratitude from a summer of selfies on the beach, NYC explorations, shopping with Mom, and days at the park feeding the ducks. I’m full of fear from doctors arguing their points and ideas, treatment plans and options. Plans and options I only found out I knew from a late night voicemail from a doctor who forgot that patients need not just medicine but love and care. I’m full of vitriol from a spring and summer of failed desires and unchecked tempers. I’m full of hope and faith in love. I’m full of shock at my current state of being and my inability to put the pieces together in the way prying eyes think I should. I’m brimming with confusion about which direction to take, which path to follow, where I belong. Truth be told, no path set out for me seems adequate, I must face the fear of creating my own path. I’m full of doubt about the twists and turns of my personal life, it all seems bigger than me and though Oprah tells us not to shrink back from life, I find myself hiding from all I need to face. And this all plays out in and on my body. Through performances of ideal emotions and moments of truth and break downs. It all plays out in my work as I throw my passion and heart into my phd. It plays out at my workouts as I fight my body and what it wants to become and force it to keep working for me. “I am not my body,” I quietly whisper to myself, “I am not this vessel or what happens to it. I am the soul that fights for recognition from within.” In those whispers I see that I can only take this physical body so far (today for example a headache took me from a workout) but I can take my soul anywhere. I’m suddenly empowered by that feeling.

So I went dark for a while, maybe coming back here means I’m ready to embrace my light. Maybe not though. I don’t know, but I’ll figure it out. I guess it’s time for me to embrace all the beautiful support, hope, love, and maybe even the miracles.

Peace and love,

Samira

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Fat Ass

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I had a follow-up MRI on July 2nd. It seemed like the right time to do it since of all the immense and daunting challenges I feel up against right now, Herbert (aka my brain tumor) seems like the least daunting of them all. Plus one doc said every year for a follow up and the other said every 6 months so 9 months since the last one seemed like a good way to split the difference. So anyway, Herbert, being the most concrete of my challenges seemed the only one I was prepared to face.

I know, that’s different. I always thought having a brain tumor would be the hardest thing I face because it is hard to control. No amount of putting good into the world will stop its growth, no amount of love and commitment will stem its destruction. Despite this, even when I may not be able to control it, I can understand it. It was operated on, not all of it could be taken out because of the consequences of its precarious positioning in my body. I may have personified it to make it easier to communicate against and so I could feel my discomfort more concertedly if I could direct it at someone or something, but really, it’s not a he, it’s not funny, it’s just a thing. Unlike a person it won’t make you laugh, it won’t tell you a story, it won’t be ashamed for the hurt it caused. It unfeelingly leaves destruction in its wake and unapologetically grows. It is a brain tumor, a mass, a genetic deformity, a miscalculation in the massive mystery that is my body. It is not feeling, it is not sorry, it just is. And while that is horrible, I can make sense of it. This will grow, it is a tumor whose growth was not inhibited by surgery. I have to continue to face the rest of my life with the options of surgery, watching and waiting, and the dreaded radiation (not gonna happen, folks). I will have ringing in my ear. I will be deaf on one side. I will likely not jump or laugh as excitedly as before because sudden movements feel violent to my body. I will lose the curves on one side of my face over time (as made abundantly clear by the stoic and crooked expression of my most recent passport photo, sure am glad that lasts ten years). I will likely see a pre-surgical waiting area again. I will feel my skull opened back up. I will feel the curves of a scar. I will massage the scar tissue. I will go to physical therapy. I will have headaches. I will get relief. I will struggle. I will overcome.

It just is what it is.

I call him Herbert, I ask that he looks down at what is left of his mangled body to consider in shame what he did to the vessel he calls home. I joke that he gets wet when I swim. I sometimes yell that I can hear him.  But really? He is just it, a thing, a part of me, a part of my narrative, but he is unfeeling, he is not sorry.

And he is getting fat at about one and a half times the normal rate. He is a bastard. AKA, my tumor is growing, so that small shred of me that kept hope alive that a miracle would happen and this one challenge, amidst all the other struggles, could be erased, was dashed. He won’t go away, he will live in a measurement in a list of big words I can’t understand in a 2 page MRI report I desperately search for meaning. A measurement that will try (but hopefully fail) to dictate the time I have, the time I cherish, and how long before I have to come face to face with the thing in my head. The hope that this journey could just be a chapter in the novel of my life, has been demeaned, it doesn’t exist. And oddly, I feel ok about it. I don’t need that hope to make me feel okay about it. I can understand this. It’s math, its science, it’s ok.

Recently in a graduation address, Jim Carrey talked about love, life, fear and hope. I am going to excerpt some of what he said because it has kept me from allowing a lapse in hope to become a lapse in faith. Here are some of the highlights:

“Fear is going to be a player in your life, but you get to decide how much. You can spend your whole life imagining ghosts, worrying about your pathway to the future, but all there will ever be is what’s happening here, and the decisions we make in this moment, which are based in either love or fear.

So many of us choose our path out of fear disguised as practicality. What we really want seems impossibly out of reach and ridiculous to expect, so we never dare to ask the universe for it. ”

More than ever I have realized that I have these moments now, I can spend my days searching for a promise in the future, or I can make that promise come true now, today, in my life. Who knows what tomorrow holds, I won’t waste today wondering (or at least I’ll try not to)… Back to the highlights…

“You already know who you are and that peace, that peace that we’re after, lies somewhere beyond personality, beyond the perception of others, beyond invention and disguise, even beyond effort itself. You can join the game, fight the wars, play with form all you want, but to find real peace, you have to let the armor fall. Your need for acceptance can make you invisible in this world. Don’t let anything stand in the way of the light that shines through this form. Risk being seen in all of your glory. ”

Jim Carrey then unveils a painting with a bursting beam of light in front of multiple faces, each contorted in a different way…

“This painting is big for a reason. This painting is called “High Visibility.” It’s about picking up the light and daring to be seen. Here’s the tricky part. Everyone is attracted to the light. The party host up in the corner (refers to painting) who thinks unconsciousness is bliss and is always offering a drink from the bottles that empty you; Misery, below her, who despises the light — can’t stand when you’re doing well — and wishes you nothing but the worst; The Queen of Diamonds who needs a King to build her house of cards; And the Hollow One, who clings to your leg and begs, “Please don’t leave me behind for I have abandoned myself.”

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.”

“We’re not the avatars we create. We’re not the pictures on the film stock. We are the light that shines through it. All else is just smoke and mirrors. Distracting, but not truly compelling.”

“And when I say, “life doesn’t happen to you, it happens for you.” I really don’t know if that’s true. I’m just making a conscious choice to perceive challenges as something beneficial so that I can deal with them in the most productive way. You’ll come up with your own style, that’s part of the fun!

Oh, and why not take a chance on faith as well? Take a chance on faith — not religion, but faith. Not hope, but faith. I don’t believe in hope. Hope is a beggar. Hope walks through the fire. Faith leaps over it.

You are ready and able to do beautiful things in this world and after you walk through those doors today, you will only ever have two choices: love or fear. Choose love, and don’t ever let fear turn you against your playful heart.”

Hope is a beggar, he says, walking through the fire. But faith? I can have faith, even though, I seem to have lost my hope. Even though, Herbert won’t stop getting fat and even though the only thing I can’t control is literally the only part of life that I can understand right now. I choose love, not fear. I will dare to be seen, despite the fat ass lounging in my head.

Peace and love,

 

Samira

 

 

Movement

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I never used to like to walk.” Why walk when you could drive?” I thought. Life was about time, efficiency, forward movement. So I drove, because it was faster, you tire less, you get more done. I didn’t realize that you see less on the way.

I haven’t been able to be still of late. My health is uneven at best but more stressful than that is the way the most important relationships I’ve tried to cultivate are in flux. They are uneven. They are uncertain. They are hurting. I often get lost in the, what if I’d have said this, and how could I have improved on that. My self-reflexivity and desires to learn and grow with each conflict between myself and my environment leads me to an overly analytical, academic deconstruction of my life. What makes me good at my job makes me a pain in the ass in my own head. Today in particular I’m having an, I’ve earned a day of self destructive crankiness, so I’m going to take it, kind of day. Being that my brain tumor taught me that no one is served by putting crankiness into the world, it has been a bit of a wash as far as a day. So I went for a walk. I decided to move. I’ve been walking a lot lately. Logically it would seem that if you have a headache, rest might help alleviate the pain. If you are feeling sad, sleep it off, perhaps when you wake you will have forgotten. Well, I seemed to be sleeping off a few too many hours and my dreams were more haunting than my reality, so I had to be awake. I found myself restless, unmotivated. Each time waking up feeling dreary and listless but my heart racing. A disconnect between my mind and body, they were at war with one another. My breath gets caught in my throat. I toss and turn, the day time heat reminding me that I shouldn’t be in bed. So I walked. At least when you are walking the racing of your heart may match the cadence of your body. I hate sitting in solidtude, alone with my thoughts. So I walk, and it feels better. Your mind races but so does your body and as you move the mind slows and matches the pace. Each flop of my thong sandals reminding me that I am carrying my body forward.

I stop for an ice tea to relieve me from the heat outside. Each cold sip rejuvenates my sore, stiff neck. I feel the throbbing in my head dissipate. I am carrying myself, I feel my power when I walk. My legs are strong, they still carry me forward. I used to only feel this way when I ran, in those moments where the pain in your lungs gives way to a glorious high, you float free of your cares with the wind at your back. I don’t run anymore, it just hurts, and the pain just gives way to more pain, but I’m grateful that my body can find a similar respite in a nice walk on a nice day.

I’m not walking towards anything, or away from anything for that matter. I take a turn down an unfamiliar street and see a house whose facade looks much like Jason’s. “It must have been made by the same builder” I think to myself. I notice a man sitting on the front step. I do that weird half-smile, head nod thing that indicates a friendly passing by.

“Great day for a walk,” he says.

“It sure is!” I pronounce.  I have to duck under the trees on the sidewalk to get by. I look over to the man, he spontaneously tells me that he is visiting, I can’t remember why. “I feel real tall going under these trees,” I exclaim, trying to exude friendliness to match the environment I am walking in. He laughs. He makes a sort of apology for the trees that hang so low a child would have to duck under them. “Oh no, I love it,” I tell him, “I’ve never felt so tall!” You see, it’s just really nice when the world makes you feel bigger than you are: grander, more important, more prominent. I ask if I can pet his small dog, which resembles an old man with newly trimmed grey eyebrows. He says yes and petting the dog feeds my soul.

I keep walking. I think of anything and everything and while I move I feel capable. I feel strong.

My mind wanders.

“I wonder how my next MRI will turn out. And jeez, how much will I have to pay out of pocket this time?” I find myself hoping the MRI will happen sooner or later, I think that I should check on the insurance approval come Monday.

I think of how excited I am to be a bridesmaid for a dear friend. Then I scoff in my mind at the woman in the bridal store telling me my upper body doesn’t match my lower body. She doesn’t realize my legs carry my heart forward, that’s why they are built strong, to withstand.

I see bugs scurry under my feet and hope I didn’t crush any.

I see pretty flowers, and consider taking a picture to post on Instagram, to make my mundane walk seem like more of an adventure. I opt not to. Digging my phone out of my purse seems like such a chore.

I listen to the ice cubes rustle around in my tea. I take a sip as I turn back towards where I started.

What is fantastic about this movement is that even when I return to where I came, I am not the same as when I’ve started. I’ve seen the little things in the world that rejuvenate us and breathe life into us. From the friendly compliments at the tea shop, to the petting of a strangers dog. All things that I would miss if I just tried to close my eyes and hope for things to be different. I used to not like to walk because I thought I had to move forward in a certain way, at a certain pace, towards a certain dream, towards certain goals. What I didn’t realize were all the little movements and moments I was missing on the way.

I can’t sit still anymore –  Alone with my thoughts I seem to torture myself into whys and what ifs. But when I move, I feel the grace of my body (or lack of grace, I am clumsy after all) feed the hopes in my mind and for those moments I am free.

Peace and love,

 

Samira

Fooling yourself

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I like to tell myself that I am not in pain. I like to tell myself that my body didn’t change. I like to pretend that my muscles are as strong as they were. I like to think my body could perform how it did. I like to pretend I am the woman people used to see when they looked at me. I perform wellness, not just to others but to myself. It permeates every part of my life, this fact that I pretend to be that same old Samira: unchanged, unscathed, resilient. I am, in fact, fooling you, and fooling myself.

Yesterday I did a workout that I loved. But I did it at a fraction of the weight I used to use and my head pounded violently with every movement, the pain radiating down the right side of my back and shoulders. With each movement and each wince I thought, don’t let it show, act casual… Breathe through the pain I told myself. You can do this. And for a moment I got into my head, sad and distraught at my lost strength that seemed to be replaced with only pain and sheer force of will. Then, the coach looked at me and said, “don’t think that you can’t do it, if you need to adjust you adjust, but go in believing you can get through it.” Ok, I thought. Don’t stop at fear, just try. If you fail you fail but at least you didn’t fail yourself.

So I’d been fooling myself that I was a certain way and that my pain was just a figment. But in that moment of diminished strength but renewed power I saw that, the woman I am now? She’s even better than the one I was, because she fought to be here and she is taking this borrowed time that she is living and fighting to be who she wants to be.

I don’t want to be fooling myself. It’s ok to feel this life in all it’s joy and pain. Sometimes I think that all this pain, the surgery, the physical losses, the emotional toll, the aches, it’s just life trying to get us to feel it. To feel the good and the bad. To live each moment with the full weight of it. To notice every nuance and celebrate them in turn. Its life stopping is from walking around numb, forcing us to face ourselves. It’s a slap in the face that says, dammit you can feel! You’re here!You can live if you just feel life fully with every breath. So, I breathe through the pain and get out there and try to live.

Or maybe not, who knows, I could just be fooling myself with that too.

Peace and love,

Samira

More lessons from a brain tumor

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It’s been a weird few months to say the least. My health has yo-yoed around almost as much as my personal relationships. So now, as I sit here with the worst vertigo I’ve had in quite some time and on a week that has held great personal stress for me, I thought I’d share what I learned. Mostly when I get really overwhelmed by the physical, personal and emotional, I turn into a greeting card version of myself: using optimistic and motivational language to shift my attitude and throw myself into work, the gym, my family and friends, or anything else. This happened again, my phone camera roll is overflowing with stylized memes that hold quotes and pictures of women longingly looking to the sky, or the sun shining on a flower. But this time, it was harder. Perhaps after a series of hardships in a row our bodies and souls cannot emerge so cleanly. Perhaps the resonances of those experiences test our optimism in the face of the next ones. This is not to say that I lost myself completely or became only the hard things in my life. I am abundantly grateful for the gifts I am given each day and the love that embraces me all the time. I have a good life, even when it’s peppered with challenges, it is a good life, and one that I love living. I did however take a blow to my confidence. I saw myself as someone who couldn’t own the challenges and allowed guilt and my perceptions of how a sick person or a sad person or a tired person or any person behaves. Living up to the expectations I perceived and placed on myself has been exhausting. Being everyone for everybody and hiding my pain is exhausting. I feel the headaches and that’s okay. I have to shatter the veneer of who I wish I was, how I wish love went and how I wish my body existed in this world, and love the incredible woman that I am and the nuanced and challenging life I have. So this, this is an attempt to shed those restraints and learn from the places I have been, to rebuild my heart and nourish my soul. And to love me, for me, Herbert and all…

Here we go:
1. Only you can make yourself feel guilty, so don’t. Make your decisions and stand behind them.
2. No matter how daunting it seems, you are in charge of your health.
3. You are also in charge of your heart.
4. Not all headaches go away so easy
5. Never allow anyone to cause you to treat yourself as less than you are.
6. Be yourself.
7. Carry Advil.
8. Never allow yourself to lose the moments that matter while worrying about other things. Even if the worry is about something important, be present where you are.
8. Love people as hard as you can and without abandon, no matter where it gets you.
9. Look at pictures of cute puppies and kitties online. Or just funny ones.
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10. Ask for help, doing it on your own doesn’t get you there any faster.
11. Nobody, not nobody can make it here alone (Thanks Maya Angelou for this wisdom!).
12. You don’t get extra points for the struggle, it shouldn’t and doesn’t have to be this hard (thanks to Ben Whitehair for this one! For more of Ben’s infinite wisdom look here.)
13. Be proud of who you are, even if you can’t pinpoint what that means to you.
14. Take the path of treatment that feels right in your gut, intuition knows more than we think.
15. Be nice to each other, it doesn’t serve us to spread cruelty, hate, or even general crankiness.
16. Be patient, healing is a slow process.
17. Don’t wear sunglasses that push on your brain surgery scar, no matter how gigantic and fabulous they are!
18. Wear a mouth guard if you grind your teeth and are already prone to chronic pain.
19. Let go of who you thought you’d be, what you wish you looked like, and embrace the beauty of you.
20. Live THIS life, live these moments.
21. Ask yourself, am I living the life I want? The life I want to share with the world? If the answer is no, make a change today. Even if it’s small.
22. Don’t let your diet ruin your day, that tiny bit of cheating won’t bring back the headaches forever.
23. Don’t punish, have disdain for, or resent your body when it is in pain.
24. Exercise, it can free your mind.
25. Be happy. Make that choice to be happy and let the chips fall where they might. If others choose not to be happy for you allow them to face the consequences of those choices. Choose joy. I firmly believe if we breathe love and light into ourselves it will extend into the world.
26. See beauty in everything and everyone.
27. Forgive and let go.
28. Use icy hot, it helps sore muscles and pain without filling our bodies with medicine. (Ok maybe me covering my neck in icy hot every time I have a headache really doesn’t do much, but it feels like something. Or use stress lotion? Or candles? Or anything. Find what makes you feel comfortable and in control and embrace it even when it makes you smell like a weird old lady!)
29. Honor your body and mind for the ways you’ve always dealt with hardship and thank it for that. But, if those methods aren’t getting you where you need to or want to go, let them go. Honor where you’ve been and what you’ve done but realize that is not the only path. Be flexible moving forward, move with the wind and see what beautiful discoveries that might take you to.
30. Read the Oprah quotes on Starbucks cup sleeves, they are just so good.

I recognize that there’s so much privilege in this list so I want to acknowledge that. I am conscious of my position in the world that allows me to focus on who I am and who I want to be despite rampant structural inequality. I also recognize the way those structural inequalities try to dictate who we should each be, behave as and what we should be defined against. The constructs of happiness, identity, sex, love and money won’t get us where we want to be. We must construct our own meanings of what it means to be a vibrant person in today’s uneven world. We’re all a work in progress, so get a head of what gives you pain, whether it be tumors, disease, physical pain, or heartache, and see who you are. Once you see yourself, love yourself. That and all of these lessons will be what I am working on.

Peace and love,

Samira

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Here she lies, where she wanted to be…

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This isn’t thought out, it’s just what’s in me now, a sort of free verse letting go of what I don’t know how to say…

Sadness is insidious. It creeps in on you when you think you’ve gotten control of it. It takes hold and won’t let go. I’ve been told happiness is a choice but in reality happiness is a construct. It is a myth that a happy life looks or feels a certain way. True happiness is simple, it’s keeping the insidious sadness out. It is not found in flowers, candies. Happiness is found inside ourselves, outside of the confines of who we’re supposed to be. Happiness is found in our hugs, in our love, but it only has to look like what we want it to. No one can ever say what happiness is.

It’s acoustic neuroma awareness week, plunked right in the middle of brain tumor awareness month. A month where we’re all called upon to “go grey in May.” I should be writing about that, right? I want to do it, to enthusiastically own my condition and wear it proudly to the world in the form of grey t-shirts and ribbons. But I won’t. I won’t advocate for a cure, nor will I raise money to find the cause. I will tweet and participate in a cursory fashion from the sidelines. But I don’t have it in me to make it my cause, to wear it like a cheerleader and commodify it in that way. My experience is not a cause. It’s not fodder for a charity. It’s just what happened to me. A chapter in my book. A page I didn’t know how to write.

Plus, I’m busy. Drowning in the sadness of my everyday. Trying to choose smiles and warmth but not knowing how. Trying to protect and nurture love, but that monster sadness takes over. It mixes in with the physical pain of a scar coming un-numb and the tension that lives in my neck. It wraps itself around a jaw that hasn’t come unclenched since that first headache more than ten years ago and which clenches tighter with each emotional blow.

I want to be a crusader for the world. To blow the cold air away and let the warmth take over. I want to wear my disability proudly. But then, I don’t. I want to cherish my story, not just of Herbert but every pitfall and every triumphant climb. I want it to be mine, not a commodity in this marketplace of outdoing each other’s sadness. None of us can ever win, no one’s sadness will free them, vindicate them or make them whole. No one’s pain will give them peace. Not until they can let it go and life more fully for each day. So I focus on my happiness, the love I’ve so desperately tried to cultivate. I abandon the world and try just to see myself clearly. To see past the cookie cutter images of a happy life, a happy family. I try to destroy the barriers that keep me tied to what seems right versus what is right. I try to be more than the story set out for me as a woman. I try to be more than the story set out for me as a scholar. I try to be more than the story set out for me as a victim. I try to be more than the story set out for me as a survivor. I am more than what I see mirrored to be in the world. I am more than what I see in my tumor. I am whatever I want to be.

I have a poster on my wall. It shows a woman dressed uniquely, you know, marching to the beat of her own drums. Next to her are the words “here she lies, where she wanted to be.” Those words always struck me. The woman in the picture is weird, but she’s fiercely herself. Unashamed and strong she claims her space in the world and with it the love she deserves and the strength she can share. She shows the world that she is herself and worthy. She values love, individuality. She is empowered. Ok, maybe she doesn’t do all that, but that’s what she does for me. I will always advocate for what is important, but here and now, I stand here in sadness and in struggle, trying just to advocate for me and my happiness. Trying to see that weird, proud, strong woman in me.

And now, some quotes:

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Peace and love,

Samira

And there the grass grows soft and white, and there the sun burns crimson bright

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When I was in high school for a time I did speech and debate. It’s not what you’re thinking, I wasn’t there to sharpen my argument tactics and skills, I was there to let a part of me out that had a hard time existing in the confines of an upper class high school. I did forensics, it was a form of debate where in ten minutes you performed characters and voices and told a story. I loved telling those stories and I could perform parts of me that were goofy, silly, nervous, over the top, incredulous, funny, nerdy. I could inhabit a space, if only for a moment, where a part of me could shine, or sometimes a part of me that doesn’t really exist could exist in that fleeing moment. Leaving a resonance in time, continuing forward, leaving it’s mark on the universe. It’s not so different from what we do here, in our social media. I send a message to the world and while it only resonates with a reader for a moment, it leaves parts of itself and becomes a part of the fabric of the network.

Those resonances, in concert with each other, change us, heal us, give us hope.

I’ve been short on hope lately. It seems the horrible decisions of surgery and radiation are left in the dust of more emotional undertakings. My head still hurts and I still feel pain, but the pain has transformed from something that scares me into the grateful realization I am alive each morning, giving me hope and resilience to think I’ve made it another day, into something a little less glamorous, something mundane and domineering. It’s habitual and it’s chronic. It’s a part of me just like my arms and legs are parts of me. It’s boring. It lost it’s uniqueness and the gratitude that came with it. And with that loss and that formation into habit the whole part of me that I thought would always stick in my mind as the hardest part of life has faded into the background and become such a commonplace part of my narrative. In it’s place it is replaced by emotional turmoils that are much less straight forward. But the resonances of those “brain tumor moments” are there and new moments are created everyday. And still are the resonances of my time performing parts of me in forensics.

When I did forensics I performed a collection of poems by Shel Silverstein and I was reminded of the resonances of that today when a friend reminded me not to silence the innocent dreaming girl inside me. I’ve been short of hope lately and this gave me hope. It was the poem I started with, and the only one I still have memorized from that time 12 years ago. The poem is Where the Sidewalk Ends and I can still here the echo of my young voice thoughtfully, slowly reciting it in such a measured way…

There is a place where the sidewalk ends and just before the street begins

There was a cadence to the way I spoke each word, a wisdom, a sense of peace.

and there the grass grows

soft

and

white…

It was steady, I steadily left a mark on the universe, a little piece of me, performing a little piece of something else, and it would go out into the world and there, it would mean something, to someone, somehow, in some way.

There is a place where the sidewalk ends, there is a place for us to imagine, there is a place for us to inhabit with all the light and love that this world doesn’t always honor.

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Peace and love,

Samira

 

Control

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My dad used to teach me about control through the serenity prayer. He never called it that, but he always told me about it when, as a teenager, I would exclaim about something exasperated by the ways of the world and those I’d mistakenly trusted. Here’s how it goes: serenity

And I uploaded it like this because, that’s how I always imagined it when he told it to me. Like a piece of wisdom you get from your Grandmother, scribbled on some flowery stationary. It was always interesting to me to see my Dad, more a man of science than of God, turn to prayer, though I’m not sure if it was a prayer to him or a mantra. Our whole family seems to inhabit that nebulous spiritual but not religious space, though I don’t suppose that is important to this discussion.

So I was a kid, and I’d get mad and say something about how so and so did such and such and HOW UNFAIR! And he’d always tell me, as though I’d never heard it before, this prayer. And I suppose it stuck with me to a point but never quite smoothed over my indignation at the world and all of its unfairness. In fact, it is that very dissatisfaction with the world that led me to my career choice, trying to find ways to make it better. Years after my Dad introduced me to this prayer I saw a 60 Minutes episode about a dying man, a professor and a powerful lecture he gave (It’s totally worth the listen). He shares lessons about how to let go of what matters and what we should care about, about what is important to success, and you guessed it, how to let go of what you cannot control. His lesson is powerful, it stops you in your tracks, it makes you feel reflective in your life. It makes you wish that people wouldn’t have to be on the brink of death to give a last lecture and recognize and name that which is most important. It makes you wish you didn’t have to suffer loss to recognize how to value that which you lost.

I’ve been through a lot of stuff in the past 2 years, some I was a culpable part of and some I was not and as life keeps heaping on the sorrow I have learned something. I can’t control everyone else. I can’t control my body. I can’t control other people’s happiness. I can’t control other’s acceptance. I can’t control other’s hurt. I can’t control other’s anger. I can’t control my health. I can’t control love. I can’t control family. I can’t control hardly anything.

But I can control me. I can control my response. I can control my anger. I can control my indignation at having a brain tumor and still having other difficulties in life (I mean come on, shouldn’t a brain tumor be challenge enough?!). I can control how much love I share (endless, if your lucky enough to be on the receiving end). I can control my strength. I can control how I learn from things. I can control how I respond to what life throws me.

A friend told me the other day that I needed to stop worrying about everyone else being happy, or even about them being happy for me or with me or when I want them to be. She told me, if others choose not to share your joy, that is their decision. They made that choice, they must face the consequences of choosing anger, bitterness, vindictiveness or even a general bad attitude. All I can do is give them a space to partake in joy with me, to see the light in life that I strive to find each day, and hope they take it, the rest, well that is just out of my control.

Peace and love,

 

Samira

Revision

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I never, in my relief that my exams were over, even shared that I passed. What a momentous moment of life that felt like! I am ABD, one step closer to the holy grail of being a PhD and while it felt like the culmination of so much, the day came and went rather unceremoniously. The celebration was me cleaning up the snacks I had brought and sitting in satisfaction in my gorgeous business suit knowing in my heart and mind I had achieved something. I also had a defense of my prospectus where I was provided guidelines for revision, a revision I look forward to making. A revision that seems like a gift, a chance to be better, a chance to grow, and a chance to enjoy the process of creating something.

It’s interesting when you achieve something we spend very little time reveling in that moment. We go immediately to what’s next and what that will lead to. One journey inevitably leads to another, right?

Well it does and it doesn’t. We inhabit our journeys just as we inhabit our homes. We are here now. We are a part of this now. Our life is now. So often people approach me and ask me what I study and what is important about it. Inevitably they always ask, “What can you do with that?” or “What will you do with that?” or “Where do you hope this takes you?”

Well deary, I hope it takes me a great many places but I am leaving that door open. Where can it take me? Well, it has brought me here. Here in a space where I can learn, teach and explore. Here in a space where I can choose a path and cultivate success. Here. It has brought me here and I am working hard for a future but I am also working hard for now. For the love of the work. For the moment. I’m not worried where it takes me because I have been given a chance to learn and cultivate and that will undoubtedly lead to success. Follow your bliss, the rest will come… Or so they say.

I suppose it is not that different from health. You struggle along and ultimately sure, you want to get better, to heal, to be cured. But if there is no cure? Then you strive to feel good, to manage pain, to find balance. Those are just as admirable as recovery. It’s like the time I was starting to feel better, starting to shift from a mentality of pain, a dominating and crushing system of pain and I hit my head. The physical caused the mental to regress, to step back, to shell up in fear. The pain caused the fear and the fear exascerbated the pain. And I spent a brief moment thinking, why can I never just get better, when will this be over? Its not supposed to be over, it just doesn’t work that way, so I realized, instead of waiting for the miraculous disappearance of Herbert and a complete reversal of pain, I should recognize what I can learn from the pain and be a responsible patient and manage my health. I can’t cure what I have just like I cannot change or predict what others will think or do, but I can control myself. I can control my reaction, I can control my actions. I can be here, I can be present, I can be now. I can inhabit a nebulous space, because what person doesn’t?

I was told by my professor I needed to revise my prospectus, to recognize and identify what I am studying and why, and to articulate that more clearly. It is under revision. In my life I am revising my ideas, recognizing the limitations and boundaries of who I am and deciding which of those limitations it serves me to push beyond and which of those simply do not serve me any longer. I am under revision. I am under revision and I revel in this space. It is not a chore, or a burden because if we’ve got nothing else to change what do we strive for? If we reach that finish line what becomes of us? I am under revision, constantly changing, growing, healing, regressing, pushing, moving, hoping, trying.

I’m trying.

Each time I go to to gym and become the woman I used to judgingly chastise for “just using the elliptical” by the fact that I am just using the elliptical and not doing something harder on my body I have to stop and recognize that on my path, I am trying. I am trying and that is the best I can do, and really, it’s pretty damn good. I am trying. I am trying hard. Some days I push and see the bad ass in me come out and other times I see that the badass in me never left, she just doesn’t like to be bounced around as much as before.

I’m trying in school, I’m trying in health, I’m trying in relationships, I’m trying in life. And, by all accounts I am succeeding, but that is not what is most important. I am trying and I am under revision and here and now, that is where I am, and I like where I am, and it’s ok.

Peace and love,

 

Samira

Challenge

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It’s funny how when you go through one challenge you think, “if I can just survive this I can survive anything.” And that seems true until the next challenge comes along, catches you off guard and causes you to stumble. It doesn’t seem as severe as previous challenges but seems altogether as difficult. You stumble so hard you’ve almost fallen and you linger on this precipice not able to find your balance. It’s like walking in the dark with an acoustic neuroma – unsteady, precarious, and sometimes scary. So you return to your mantra that got you through, “I am strong, I am powerful, I can get through this.” Over and over again it plays in your head, only stopping for those moments you cautiously talk to God, wondering if he’d listen to someone like you, if he’d help solve your problem.

And then you realize that this is not something a mantra can fix, it’s beyond your control. So you wait patiently for the universe to help you confront your challenges or at least make the answers visible to you. We can’t always see the cure in front of us, but maybe it’s just further in the distance. Health, life, love, they are marathons, and maybe we just can’t see over this hill yet. You try to quiet your mind and the patter of your heart. You learn to quietly live with your challenges and patiently wait to find the strength (or be given the strength) to resolve them.

Faith is a funny thing. It’s hard to know it because it’s mostly invisible. So I put my faith in what I know: love.

Peace and love,

Samira