Pain pain go away, come again another….never

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They say pain is what makes us stronger. It teaches us. Pushes us. Forces is to grow.

What does that mean?

Is it true that to appreciate the amazing moments we need to see the horrible ones? That to see beauty we must understand what it is to see what is ugly? Is it physical pain that teaches us? Emotional? Why is it that those people who experience the most pain are, well, not life lovers remarking at the beauty of daisies, but crotchety old cynics. Or are they? Hmmm. I know, MIND BLOWN 🙂

I’ve certainly learned from my pain. Every moment of it. Physical, mental, emotional. Every push past it, I learn. I fight. I grow. I ache. I learn. I fight. I laugh. I’ll win.

What’s it all for? Oh, I certainly have no idea. Being a “life is about the journey and not the destination” type of woman, I don’t really spend too much time searching for the meaning of life or of why life seems altogether empowering and fleeting at the same time.

I am still uncertain about a lot but here’s one thing I have found in the last few days.

Some of your friends, the ones you always thought would be there, they turn out to be total shit.

Then again, in the wake of that there are throngs of people stepping up graciously and lovingly to take their place. Some I’ve always known, others are new friends but they’ve taught me that even when it seems quiet, dark and lonely. They all show up. Sure you parse out those who care and those who don’t. But most of them? Well they are just downright amazing. Most of them have been patient as I holed myself up in phd school, never giving up on me even though I never could show up for anything. Others call every single day. Checking in. Caring. Other talk when we can or not often at all, but the love, it’s always there. Always.

You see my mom got back surgery this last week and honestly it was much harder on her than we’d hoped. She is in the clear now, recovering beautifully but to see her pain, to feel her fear – it brought us all together but it broke our hearts. And we held each others hearts together with our loving bond. I know, I know sap fest 2013. Lets all cry it out.

And when we were tired friends showed up. And texted. And called. And even those friends who had no idea, still managed to somehow send love this way when we needed it. When I needed it.

I’ve learned something about people. For every shit person there are a hundred good ones out there. So I give everyone the benefit of the doubt. I believe in other people. I believe in their humanity.

My head hurt today. The medicine didn’t work and I even briefly debated dipping into the Percocet I brought home from the hospital back in December. I didn’t. Instead I worked out, put my laundry away and made a nice dinner for a friend. I lived. Perhaps slightly lazily and somewhat lamely but I got through this rough, painful day.

I was inspired by my mom, my friends, my coaches. I just knew, that today, in this moment I am fine and I can do this. I learned that from a friend.

My head hurts today. Maybe there’s a reason, maybe it’s just the stress of wrapping up my first post-Herbert semester (wahoo!) or maybe it’s medical. Who knows? I’ll get a CT angiogram (I heard it makes you feel like you’re peeing yourself…..eeeek) next week and get real answers but until then, who cares? Not like I can do anything about it. So I’ll wish it away but when it’s here I’ll handle it, live with it, and hopefully I’ll even learn from it.

Peace and love –

Samira

Blame this post on excessive amounts of feminist theory….

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I’ve found a trend in my writing about letting go of control, and I suppose I thought that meant being totally fine in the face of whatever shit hit me directly in the face. Taking my face-shit contact with a smile. Ta da! There’s that shining good attitude. What I’m realizing now is the grief, loss and dealing with those things are pervasive. These feelings are completely and utterly pervasive. It’s a lonely and isolating experience even when you are completely surrounded by love.

I’ve lost my hearing this year, though I’m pretty sure with the low tones I still have I may be able to make out whatever secrets James Earl Jones tells me in my decorative ear. While day to day activities haven’t changed that much due to this loss, it is something I notice every day. The tinnitus is constant, relentless and variable at the same time. As soon as I adjust to one tone, another begins. When I found out I had an AN my sister, the doctor, told me to mourn the loss of what I thought my life would be like. Not in some drastic way but to recognize that my reasonable assumption that I would be a fully hearing person all my life was a myth that I had to debunk. I made this disability seem less by negating it with all the disabilities I didn’t have. At least the surgery didn’t take my face! At least I am mobile! It could be worse! At least it’s invisible! Because god-forbid anyone know that this temple has a chip in its foundation. I soon realized I never was able to conceive of myself in another way because I’ve always been interpellated by a system of ability and a discourse of overcoming. “What? You run the slowest mile in school???” My high school track coach said to me when I was 15, “Well run faster! Get past it!” I was Most Improved Runner that year. I can overcome almost anything.

If there’s a will there’s a way!

What people don’t realize is that when something is lost, something is gained. And yes, I know that statement too drips with the pedantic language of overcoming one’s challenges and obstacles, but bear with me. With my hearing loss has come an ability to want to understand disability. Whatever that might mean. Is it a shame I had to confront it head-on to take it on as a part of my intersecting analyses of the world? Absolutely. But I’m only human. And I’m trying like hell to be self reflexive, and open minded, and patient with myself and others. What was gained was humanity chipping away at my sarcastic sense of humor that seems to have taken residence in the space Herbert is starting to vacate. I met awesome people and am learning tons. But still, something was lost.

I also lost a great love in my life. The pain from it is absolutely pervasive. And trying to relinquish control of the situation, despite my inner desires, does not mean to a)pretend it didn’t happen and act like he is on a business trip b) act like I’m totally fine and smile endlessly until my jaw aches or c) to try and accept it for what it is because at the end of the day life is the will of the universe. Relinquishing control, instead, has to mean allowing the true emotions to be felt. Something I have failed to do with this whole brain tumor debacle. My motto has been to “act casual,” and sure it works fine when you’re at school or work or at the gym. But when you’re done putting on the facade you have to see where it’s cracked and use those cracks to break it down. Meaning I have to be honest with myself. The feelings of sadness in the face of loss are pervasive. So what do I learn from them. What is gained with this loss? It’s going to take time to know but something will. Whatever you believe about the world and the powers that dictate our lives both human or other worldly, you must recognize you are an active agent in your own life. I am an active agent in my life. I get to write my own story. So relinquishing control? Well it means letting the shit-face contact happen and then taking it and making some kind of shit statue in your own honor and glory. (Ok, ok, maybe too far with the poo thing). In all seriousness to let go I have to recognize that I’ve been passive in my own history. I cant control tumors or love or friendship or health or ability, but I can sit with the feelings that come with them and then I can react to all of it. Walk with me why don’t you? Help me write my own history. Pardon me, Herstory.

Lots has been lost this year. The pain, well it is simply pervasive. But so is the joy and the laughter. That my story is bound to be a comedy in the end will be my salvation. Lots has been lost, and lots stands to be gained.

With peace and with love-

Samira

Resolute

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I have been trying to hold on to some kind of a resolve. I’m resolved not to be sad about my tumor. I resolved not to let the tumor run my life, it wouldn’t define me. I was resolved not to ever let my moms chronic back pain get her down. I made her yell, “I am not a wussy ass bitch!” In the worst moments of her pain. It wasn’t even my issue to solve, but I wanted to. I resolved not to worry about the surgery she has coming up. I resolved not to be sad about Jason. I resolved not to be angry, bitter or cynical in the wake of watching us fall apart. I resolved not to slow down. I resolved to charge forward without a break. I resolved to act and dress ok and hope the rest would follow. I resolved to breathe through my pain. To be there for others. To be strong. To get better. To be brave. This whole series of events, that I don’t seem to be able to extract from one another, that I put in conversation with other things that need “overcoming,” well, I’m tired of them.

I’m tired of all of it. It really has been a devastating series of events. Just painful and hard and gritty. And yes, I recognize how wholly ungrateful that sounds. It’s one of a handful of years in life that prove to me that all those things we casually assume never happen to us? They do. I’ve had other instances of this in my life and I’ve let them go but right now? I’m still in this, I’m still tired.

It’s a strange reality to know that no amount of optimism and funny memes can make real life change. We don’t have control over everything. We cant will things to be different. Oftentimes love isn’t enough. Faith isn’t enough. Sometimes shits just hard. The things we believe in, they can’t carry us forward, we have to work hard and carry ourselves forward. Well, I resolve to move forward.

Perhaps it is the weight of finals, perhaps it is that my favorite show, The office is ending, maybe it’s just a bad mood. Whatever it is, My heart, while bursting with the love and friendship I have seen, feels broken. And tired. And really, just kind of irritated.

Don’t worry though, I’ve resolved not to let it rule me!

Those of you who are inclined to read into my thoughts and pathologize me casually in texts or when you see me, don’t. I’m not sad, I’m not lonely, I want to focus on me. I don’t need to be rescued or be asked if I can take on what responsibilities I’ve been given with my life. Though I appreciate your concern. And while life is hard I still see how lovely it is. I still laugh everyday, I see that life is a beautiful thing, it’s just that I would be straight up nuts if this last few months hadn’t made me at least somewhat tired.

We set resolutions and create resolve to find solutions, to make things better. To resolve something is to bring it to its end, or to tie up its loose ends. Maybe it is to find the happy ending. By loosening my grip on all this resolve I’m not giving up or throwing in the towel or sinking into a deep depression, I’m just being human. Relinquishing control of the uncontrollable. I’ve been working on physically doing this. In my workouts I had noticed a hesitation, an apprehension to give it 100% for fear of a headache or leak or I don’t know, maybe Herbert would fall out ass-first. Then my doctor said something that stuck with me, “you have to live YOUR life, you have to get back to it.” I began to let go of my fear. If problems happen, they happen, you face them as they come. So I’ve been running faster, lifting harder, working to the point of absolute failure. And? It’s been great. So now I resolve to let go of all that goddamn resolve and walk away with new resolve, to let go. To embrace (maybe a bit begrudgingly) whatever happens and handle things as they come. Because otherwise the weight of the world begins to weigh us down, and we can’t carry it, it’s too big of a burden.

Peace and love –

Samira

Meals for One

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Soooooo, obviously this year has been an odd one when taken in the aggregate of my life. It has perhaps contained the worst of the challenges I’ve had in my life since maybe 2005? Not really sure, I’m not sure that I am dramatic enough to rank things based on negativity. That being said, I’ve been congratulated by many for my ability to “rise to the occasion” or “rise above” my challenges. People “can’t even imagine” what I’ve gone through but no one is shy about telling me their prescriptions of what is “good for me.” I’m not sure which occasion they are referring too, perhaps my surgery? my break up? PhD school? Neither really seems like much of an occasion. As for those of you that think drastic life changes would be good for me? You’ve not been paying attention. I am a creature of habit. Changes in my routine? They just give me a headache. I’m not going anywhere, I’m not flaking on my commitments and I’m not running from my life. I don’t want to be reactive. I want to be thoughtful about how I live, considerate, honest, not just brazen. I’m just living my life like anyone else. My path may not be too similar but really, lots of people seem to relate to me, so maybe it is not that dissimilar either. I like my life, I have no regrets, not even in my most pathetic moments.

FOR EXAMPLE:
Grocery shopping. Ah the pinnacle of despair. Perhaps it is because for me, in my busy schedule and with my forgetfulness, grocery shopping was an event. Usually one that coincided with Jason coming to visit me. I would go to the local store poring over the best foods to make taco night, or spaghetti night, or sandwich night. I know, I’m no chef but I did my best. No, it didn’t often turn out right, or even close to right. But we ate it and I’m mostly sure it was healthy. Now? There doesn’t seem much reason to take all the time it takes to cook just to eat what is most likely a disgusting meal all alone. It’s less funny without the opportunity to watch someone cut their meat up into millimeter sized portions fit to swallow directly since it was too tough to chew. Plus, I should really be on a diet. I mean, ever since my spinal tap during surgery I haven’t been able to hold my abs in correctly and this only gets more difficult as the abs play hide and seek behind my lumpy flesh… Anyway, when I could stand it no more and while waiting for my Door to Door Organics to come, I decided I needed some food. Not one to waste a trip to the store, I decided to go to Target so I could buy the new lipstick I saw on the TV commercial (ah to be a willing victim of the corporatized media), I mean, it had been quite some time since I got a new “tumor lipstick.” I’m apparently not a very good shopper when I’m tired. After standing in the frozen meals section for about 20 minutes looking for food that was natural enough, organic enough and tasty enough to fit my mood I realized nothing in the aisle would do the trick. Forlorn, I turned to go and saw my reflection in the glass across the aisle. My image, slightly disheveled, centered under the sign. “Meals for one” it read. Oh no. This is my life now, a sad future of frozen Healthy Choice meals that are so painfully unsatisfying that this “one” purchasing the meal, has to eat three or four to curb my hunger. None of it tastes good. SO I thought, welp, fuck it. I’ve been shoving quinoa up my face for so long, I deserve a break. I left Target that night with the following:

2 containers of Stouffers Mac and Cheese
2 varieties of Oreos
Magnum chocolate and sea salt caramel ice cream bars (don’t worry I got the snack size)
All natural cookie dough
3 containers of eggs (Apparently in my mind I thought I was having an Easter Egg Hunt)
whole wheat tortillas
a can of refried beans
an industrial size container of hot sauce
2 lipsticks
Orange tic tacs
Pure unsweetened cranberry juice (I heard it gets rid of cellulite which apparently I am planning to double with my current diet)

Overall I think we can call this trip to the store a success, no?

Tomorrow my organic fruits, veggies and meats come in the mail and all will return to normal. And what I’ve learned from this experience is sometimes we just need Oreos, and the birthday Oreos, well they are deceivingly bad. I thought that buying toilet paper and beef jerky online were my lowest moments, then, I went to the store. Ugh.

That being said, I must say that I find myself quite hilarious.

I also had a lot of good things happen in the last week. I kicked ass on my Crossfit Workouts, rocking not one, not two, but several double unders in a row. Then? I ran my little ass (figuratively) off and beat my own 400m time, and pretty much walked away from my workouts feelings stronger and better. I also spent some time with a Vestibular therapist, whom I was highly skeptical of and I think it showed. After several exercises that knocked me off balance the therapist set out to “massage my scar” in order to loosen the tightness in the tissue to help with pain. Well, that night I was in the worst pain I’d had since surgery. Maybe you have to go down before you can go up… not sure, I’ll keep you all posted on the progress (or lack thereof).

I got to visit Raider in Henderson, he was affectionate and fun, and I’m looking forward to bringing him home. We swapped stories about our favorite shows and movies and chatted about life in general. I did most of the talking, being that he is a dog.

Raider

Raider

Of the most consequence was a panel I had the opportunity to be on about disability and pedagogy. I was honored to be included on the panel and work with such incredible scholars. I had agreed to be on this panel to discuss what it was like navigating the University disability system with my new-found hearing loss. I must admit it has not been great. The impetus to stay silent about a change in health or ability is one that I took to heart, not wanting to be judged or have opportunities lost for me. Taking on the identity of “disabled” still not something I have come to terms with and it comes with a stigma that can be painful and damaging. There is an awkward process of “Coming out” as disabled in which you must locate yourself as not having ability based on arbitrary standards of normal. Upon this revelation in ableist environments I am often confronted with a pep talk, “oh sure, you’ll get better” or “you can’t even tell!” or “it’s just a tough time right now.” This time, it’s the rest of my life.I don’t need you guys to make me feel better, but I get it. It’s awkward. Acoustic Neuromas, while rarely life threatening, leave life long consequences. Reminders of where Herbert was living. If you don’t want to deal with the objectifying process of identifying yourself based on your physical faculties you have to try to “pass” as normal. Pretending it doesn’t bother you to strain to hear or that you don’t need a statement repeated. They are alternatives that assume normal ability as we define it is a neutral status and the rest of us must define ourselves against this norm. One of the other panelists encouraged us all to think in terms of our abilities. To acknowledge the ability and privilege of our hands, our arms, our feet, our strength, our mobility. Life is not a binary of ability and disability, not in practice. In reality we exist on a continuum of difference, no one ability being better or worse than another. Not better. Not worse. Just different. I don’t need to “get better” from my hearing loss. YES, IT SUCKS THAT IT WILL NEVER GET BACK. I admit that. But it’s not my new normal, because normal is a construct. I don’t need to get better because I am not sick. I’m not bad. I’m not a pathology that can be fixed. I’m me. I’m quirky and weird and my right ear is (mostly) decorative.

For anyone who is interested, here is how I closed out my portion of the panel:
“Shouldn’t all education be special? The notion of normal is one of the more problematic notions in the academy. The desire to cure or fix those that don’t fit into presentations of normal is often stifling and offensive. Let us ask ourselves why we valorize some modes of assistance and not others – glasses represent someone who is brainy, dedicated, and smart – a hearing aid on the other hand represents a handicap. Choice and agency are central to individuals navigating systems that are based on structures that have not changed as disability discourse has progressed. While disability rights are central to helping disabled bodies operate in an ableist society the distinction between disability and ability within institutions of education are problematic – the notion of normal is taken as the blank state – assumed to be neutral thus those of us with disabled bodies are forced to define ourselves in relation to the arbitrary category normal.
“Without the monstrous body to demarcate the borders of the generic, without the female body to distinguish the shape of the male , and without the pathological to give form to the normal, the taxonomies of value that underlie the political, social and economic arrangements would collapse” – Rosemary Garland Thomson ”

Anyway, I have to go eat a meal, for one – which I suppose is ok with me. I mean, it’s going to have to be. I also have to go let my freak flag fly.

Peace and love –

Samira

My head hurts

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I should be asleep, or more likely doing the work that I carry around with me as I lackadaisically wander around my house. I go from room to room, hoping for some kind of inspiration or motivation. I should be working right now, there are things due tomorrow that I am not even close to having complete, but my scar is itchy and sore, my ear is ringing and the sadness I feel is palpable. I manage to numb it here and there but I’m grieving a loss. A loss much worse than that of your perfect, clean bill of health. My boyfriend and I, after several years of joy, pain and love made the difficult decision to “go our separate ways.” A phrase I am still seeking to understand. In a blur of tears and frustrated raised voices I remember hearing the words, “you do your thing, I’ll do mine.” Strange. I thought that we were each others thing.

It’s painful, it’s scary, but I figure, if I got through brain surgery I can get through this. I’m hoping he has some similar outlook. If he can get through my brain tumor, given that it was much harder on the peanut gallery than it was on me (I’m guessing), than he can get through this.

Any person who has ever been the victim of life’s many cruel heartbreaks understands that they make everything hurt worse. Working out, the anger and sadness it makes you work harder, but gosh darn is it a huge effort. Reading, just feels like torture. Headaches, well there’s no one to help you struggle against the ibuprofen bottle when you’ve waited too long to address the pain. Watching TV, why are all the plots, subplots and one-liners about marriage, love or couples? Fear of a CSF leak, it’s almost like, well who even cares. And listening to music, the worst most digging feeling of all, that is until you have to go to sleep. Then the echo of John Mayer’s Dreaming with a Broken Heart plays in your head and you just can’t remember what it is like to wake up without the knowledge that you have someone special to wake up to. It’s all very typical, run of the mill break up stuff. We’ve all seen or felt it if we’ve loved more than once. And yes, it sucks.

Despite that, I’ve shown incredible strength, humility, and hope in the last few weeks (If I don’t say so myself!). Friends going through problems have been able to rely on me. Though my focus has been waning I have completed all my assignments in the nick of time. I’ve showed up for the people I care about the best I could. I’ve practiced patience with myself and others. I made everyone laugh at the Acoustic Neuroma Support Group meeting and in that moment I wasn’t this broken down woman looking for a break, I was me. I was funny and vibrant. Making light of a scary situation for the sake of the new members (aka the newly diagnosed). I was them just at the last meeting three months ago. Lost, confused, scared. Hoping the worst of the outcomes wouldn’t be me and the best of the outcomes would be worse than anything I would get. One woman remarked how exhausting it is to sit in a restaurant straining to hear the person across from you, how you go home so tired from something so simple as trying to hear. They asked for tips for coping with that. One woman offered a nifty earplug that helps block out peripheral noise. Another recommended seating yourself in a certain way. Yes, I can relate to that feeling of exhaustion from perking up for an entire restaurant meal, so my advice? Stop listening. Prepare your canned answers and when you see your friends lips stop moving toss one out. My favorites? “Oh, really!” or “You don’t say!” Of course everyone thought I was nuts but everyone laughed and we all felt the tension dissipate. Yea, we have brain tumors, really, we have the best kind of brain tumors (#winning!) and what’s more, we can still laugh about it. Even if our smiles are crooked and we laugh too loud. Anything that anyone said for the rest of the meeting I responded to with a hearty, “Why, you don’t say!” It works. Try it.

Jason always knew when I was just pretending to hear. He’d chuckle when I gave answers to what I thought I’d heard. I think it added to my charm.
So yea, I’m sad and things are hard but I’m still laughing. My plan? To sit with these feelings and learn from them. Embrace them and try my best to understand my circumstances and as soon as I’m done with that? I’ll seize my fate.

Antoine de Saint-Exupery once said “Love does not consist in gazing at each other, but in looking outward together in the same direction.” So I’ll figure out where Jason and I were looking and then I’ll see where I need to look to next. Life, afterall, is not about finding yourself, it is about creating yourself. I will create myself from the wreckage around me, as soon as the dust settles. As for Jason, I’ll never say a negative thing about him. He is the one truest love of my life thus far and I value him, his passion, his drive, his friendship and his love. I miss him terribly.

In the meantime, I have a few weeks left to this semester, some important family time on the horizon and come this summer my hearing dog Raider will be by my side. I’m nervous and excited about what lies on the horizon!

My scar is itchy and sore, I’m sad and unproductive, but I’m still here and still, oddly, happy with who I am. Satisfied with my life, however problematic and grateful for the love that has shown itself to me in a time of need.

With peace and love –

Samira

Real love

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When I was recovering in the hospital my boyfriend brought me a sweater, one of his, to hold on to when he couldn’t be there. Recognizing that my family wanted to spend time with me in the hospital and visitor space was limited he bowed out gracefully the first night so that my scared mom could spend a sleepless night by my side. I held that sweater next to me all night, the comfort it brought me is one of the few things I remember clearly from that night. The next day he showed up, that night he stayed with me and all the while I held that sweater next to me as I saw him uncomfortably sleeping on the couch by the window. When we got back to the condo we stayed at after I was sent home from the hospital, though he was staying with me he couldn’t sleep next to me, so I slept with that sweater. It got soaked from my ice pack, it was wadded up in a ball under me. I hugged it every night, it was my safety. He would wake up every few hours and I’d roll over to find him standing over me with my medicine, a glass of water or a comforting hug or hand placed on my neck. In those moments I felt safe. I felt loved and I felt like everything was going to be ok. Many people helped me along my journey to recovery, and he was one of the most important ones and was just that same support to me before I even knew I needed it. Just a few days ago when a scary headache suddenly hit, he held my head as I cried. My one wish for all of you is that in this life you experience that kind of love. It’s real, it’s messy and it’s not always perfect or pretty but it’s genuine. It heals you even as it puts you on edge. It makes you feel alive even when it pisses you off. It breaks your heart because it is just too big to hold.

Before I knew I had anything wrong with me Jason pushed me to be my own person and encouraged me, he was proud of me. As someone who needed support he came to doctors offices in every state with me, held my hand and poured me coffee in every waiting room. After I healed he laughed with me even when our circumstances were shitty. He took me to dinners and watched movies with me even when I was a debby downer. He drank coffee with me while we worked and shared his business with me. He pushed his uncertainty about our future aside to enjoy moments with me. I had no ability to do the same. He’s my best friend, love of my life, and my hero.

Peace and love –

Samira

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Oh Bother, this too shall pass

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It’s been a long time since I’ve posted anything on here. Partially because I didn’t know how to articulate what I was feeling, partially because I didn’t want to seem like a whiner, and partially because there’s not always much to say when you are just “getting by.” I have been angry and frustrated as of late. I think there is a bit of a chip on my shoulder as it were. Perhaps it is residual anger about getting a brain tumor. Perhaps it is (if I’m being honest) frustration that my brain tumor really hasn’t set me apart in any way. Or perhaps it is just because once something really bad happens, you think you’ve paid your dues and you set extremely unrealistic expectations for your life and when the universe doesn’t give you what you want? Well, you get pissed. And boy am I pissed. I am seething. There is an abundance of irrational, unbridled, targeted, hurtful, mean, pointless anger pouring from me. I try to contain it, but really fuck that. Why should I? Am I not entitled to be pissed once in a while? I got so angry the other day that my mom witnessed me almost wanting to tear my own hair out. She drew me near her and opened her arms for a hug. When I got close enough to her, she pulled me towards her head and whispered (in my good ear), “if you ever pull my child’s hair again, I’ll kill you.” Then, she laughed and told me to have faith. “Faith?” I responded flippantly, “faith in what? God? God gave me a brain tumor.” As my friend later pointed out, “God also let you live.” While my relationship with God is perhaps a bit fractured if even existent, I do want to believe in something (kind of). In destiny, in fate, in faith, in hope. I want to believe there is a purpose and calling to my life. It’s hard to do sometimes. Mostly, I want to believe in myself.

So what has made me pissed? Well, for starters, my beloved Teddy died. (You can read about him in my post titled Tugboat Jenkins ) It was his time and I am glad he is not suffering, but the selfish part of me, wanted to say Goodbye and I didn’t have the chance. That combined with various family dynamics, family health issues and consistent pressure from various angles has left me listless and cranky. I’ve made it three months post-op and have been overwhelmed by the love poured out to me by friends near and far. I am not sure counting the months since surgery is super beneficial anymore but it is a marker of where I am. I’m glad to have made it but I still have headaches and I’m tired of telling people about them. I still hurt, I still can’t hear. I’m super busy with school because my time management has gone to crap. I’ve had the stomach flu, and some kind of nasty bug in the last few weeks. My body is tired but fighting to come back (Crossfit is my new best friend). Generally I thrive when I am busy, I thrive when I have stress. The stress I have lately is not that of meeting deadlines and writing papers, it’s about life. And this? It’s too personal, too pointed. I’m being called upon to be an arbiter in my own life and I’m not ready to do that. I was okay coasting along, focusing on school, not acknowledging that many of my personal relationships are in shambles. I’m healing so there is not a great excuse not to deal with things. Pretending I can’t hear the arguing, can’t feel the tension isn’t really working. I keep waiting for some divine intervention, some kind of response to the blind faith I used to have. It’s useless, I know but it sure as hell beats making any real decisions. I have a quote on my wall that says “Life isn’t about finding yourself, life is about creating yourself.” I want to be the person who can create myself, I see myself as that person, but I use fate, destiny, “meant to be” as excuses not to actually face the things I want to and need to confront. My tumor has changed me, it has made me afraid, of regret, of hurt, of wronging anyone and it has left me paralyzed.

I can’t think straight anymore when it comes to my own life. I’m too tired. I want to dive into my studies, find my cause and pursue it relentlessly. I want to be wedded to my career, my passion to help women. I want to be devoted to my cause. That is who I am, that is who I am called to be and I love it. I want to create myself as a woman who doesn’t get pummeled or walked on. Who asserts herself in her life. Who makes positive change. I want to be who I am, who I used to be and the woman who is hiding under this veneer of anger and self- pity. It’s Persian New Year, a celebration of new life, spring, and good thoughts, words and deeds based on ancient Zoroastrian traditions. It’s a new beginning, and a fresh start. So, in honor of the new year, I’m going to stop feeling sorry for myself and do something about it. About what? I’m not sure, and what I’m going to do? Good question, I’ll figure it out. If life is about creating yourself than the whole of life is the journey. I’m not going to worry, right this minute, about where that journey leads.

I was told, in the midst of a ranting venting session, that a little gratitude wouldn’t hurt. I may not be expressing it well but I am grateful. For my life, for starters, and for the people in it (the ones that keep me in check and listen to the ones who obtusely insist on what is best for me) and the conflict I find myself mired in. We fight because we care, it’s when we have no fight left in us that we should start to worry. Off on my journey…

Peace and love –

Samira

Where we gonna go from here?

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I’m not really sure where to go from where I am at anymore. Everyday I still contend with pain, I still deal with the fact that I cannot hear. The ringing almost never stops. I still go to doctors more than I used to. I still tackle disability and ability. I still fight my body for the strength I know it should have, or wish it would have. I still make inappropriate jokes about my condition. I still have friends send me their thoughtful love and prayers. But, things are, in a sense, back to normal. And that’s the trouble (that and the fact that I started a sentence with “but” and followed it up with a sentence starting in “and” and my overly neurotic grammarian doesn’t even care to change it). Things have fallen into their old routine. A routine I both hoped to shatter after surgery and yet fought to maintain. My family has gone back to their jobs (not that I hoped they wouldn’t), I’ve gone back to school (which I am so grateful for), our concern has shifted back to Teddy (I hope he gets better!) and that is all of what I wanted, but sometimes I suppose I feel I went through all this, and no big lesson has manifested itself. No big change took place. I mean hell, I’m still a run of the mill Ph.D. student advocating for an end to structural oppression and violence and I still have a brain tumor. Now I just have a scar. A scar inappropriately hidden under an absurd shade of red hair. Yes, I said it, no Persian should have red hair. No, that’s not prejudice, it’s just fashion.

I suppose it’s the feeling of uncertainty that has me so confused. Do you ever just feel like clarity should be waiting around the corner for you and its just not? Nothing is clear, no divine meaning revealed itself. My life doesn’t seem particularly more valuable than it did before. More fragile? Yes. More precarious? Absolutely. So I should take risks and fly with the wind right? Or not, or I should be super over-cautious and shy into my studies, like I always do. It’s not that I have done nothing. Some days it takes a lot of guts just to go back to school or to run regular chores. For example, to go to the eye-doctor and when they ask, “have you had any changes in your medical history?” to casually drop in the word “craniotomy.” It takes energy to get through school work. It takes work to get through the day. My risks – though they may seem mundane to you, or even commonplace if you are one of those people who “has it all together” beyond just appearances like the rest of us, to me they were big feats of strength. Joining crossfit for one. It took a huge health crisis for me to try something new. It was scary, and each time I go I feel the adrenaline of my nerves pumping through my veins. With every repitition I fight back my tears. Even today, when the barbell got caught on my fat ponch and caused me to fall over (I know, cute) I didn’t even cry. I did an awkward snort, chuckle, snot thing and kept going. And it’s hard. And it’s embarassing. And brainsurgery? Well that just sounds like a very elaborate excuse. Going back to school. That is another triumph. I never wanted my “diagnosis” to be a secret but I also don’t want it to define me. Facing people each day, the “how are you, really” comments, while expected, and almost required do little to make me feel like I am getting better. Visiting disability services – that was a triumph of epic proportions. Visiting the center where they train hearing dogs. That was a big deal. Considering what it means to have a hearing dog, making my invisible disability visible, that was a task in and of itself. So my normal is oh so very simple, so very everyday and while it is not that exciting it’s also not that dull. That is what is so confusing. How can things seem so singularly lame and daunting at the same time? How can I define or re-define myself when I can’t think past what I’ve gone through? When will this be a thing of the past? Are all my activities, my triumphs, my struggles, are they too wound up in what I went through? Will I always have this chip on my shoulder? Will I always wonder why?

I went for a two month check-up on February 20th. All is healing “as well as expected” though I was urged to ween off of the caffiene ibuprofen cocktail that has kept me going the last little while in favor of plain old, simple healthy living. I did have to get a chest x-ray because of a deep cough and residual tightness in my chest, but it is purely a “prudent precaution.” As I told the tech that took the x-ray, “last time I was here you found a brain tumor, so I’m kinda paranoid.” He didn’t blame me. The x-ray aside, the coffee and cookies in the imaging center were enough to convince me to come back again anytime. It’s the small stuff right?

One thing that has happened since surgery is my inability to take crap (well, let’s be honest, I’ve always been a bit of a softy so I take less crap). Whereas I always talked a big game about things I say or would have said, most of my tough girl responses fall into the latter category, at least they did before surgery. Things I wish I would have said, but didn’t have the balls to say. Now I say things, I am still super apologetic in the aftermath of asserting myself but I’ve found less of an ability to just get pummeled by the people around me. I have good things to say, and I’m not crazy, so I’m going to say my piece (sometimes, and with caution). Look, I’m a work in progress, ok? When I was in the doctors office the nurse asked me the standard question, “do you ever feel sad, hopeless or depressed?” And although just the night before I used the exact words “sad and hopeless” to describe my mood, I said this to the nurse:

“Eeeeeh, mmmmm, no. Nope. Yea, let’s go with no.”

Liar.

But what is profound is not my ability to lie to myself and a nurse in a very unconvincing and pathetic way, it is that I had to interrogate why I felt that way and why I felt so deeply ashamed of it. Sure, because life is not fair and I got a brain tumor, and I like to hear things, blahdy blah blah. Really though? I just want control back. Being sad interrupts my control freakery. I want to be the arbiter of my own destiny and it is a messy road figuring out how to do that. I want clarity. What I was forced to confront is NO AMOUNT OF ANESTHESIA BRINGS CLARITY. Why I assumed life becoming marginally more complicated would make things more obvious I’m not sure. It’s a hot mess. HOWEVER (just a fancy but), what I discovered is I like it that way and it really isn’t that bad. It’s just not. It’s pretty interesting. And look, I understand my brain better than most of y’all. I mean what the hell would I talk about if things were all willy nilly, happy go lucky? My confusing search for clarity? It led me to one thing: gratitude. I am grateful for the big stinky mess I have been handed, I can get through it and I think I can even de-stink it. I am thankful for the people that walk with me as I muddle through. I am thankful for one working ear. I am thankful for my Ph.D. program and the continual support of colleagues. I am thankful for the people that don’t treat me like I lost a part of my brain (Herbert was in the empty spaces around my brain!) I am thankful for friends who go out of their way to eat pie with me. I’m thankful for pie. I am thankful that I get distracted by my school work to the point that I forget, I forget all of this and aspire towards a greater goal. I am so grateful. For all of it, even the shit. Which is not an easy place to be. Gratitude is exhausting, it takes your energy and spreads it thin. I think it’s worth it though.

One of my favorite songs is by Mat Kearney called “where we gonna go from here” (Check it out! http://www.youtube.com/watch?v=uOGjHFHackc). It’s a song about a journey, it’s nostalgic yet forward looking. It’s pensive but its powerful. It’s how I feel. I don’t know where I am going to go from here (not actually, tomorrow I’ll go to school and I’ll love it because I love school and then I’ll come home because I genuinely love my condo – I’m talking metaphorically….just making sure we’re on the same page). I don’t know where I am going to go from here, meaning, I don’t know what my life will be in two months, two years, or anytime in the future. What I do know is I am living. I am taking my risks, I am getting better. I am fighting back. It may be boring, my victories may be small but they are mine and I am fiercely proud of them. So where I end up? No one knows, least of all me. And that my friends, is totally okay.

As always, peace and love –

Samira

Jump, breathe, jump

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I decided I needed to reclaim my life. I decided I needed to take control of things. As I have always believed that a strong body leads to a strong mind I set out to relieve my body of it’s weakness and hoped my mind would follow suit. So I went to a gym, CrossFit Roots in Boulder, and decided to start big. I had tried to do Nike workouts with a kinect but given the small size of my house and odd shape of my room I spent most of my time arguing with a computerized trainer programmed to give only slightly patronizing motivational responses. I ended up giving the TV the middle finger while waiting for the clock to run out on the workout, that’s when I knew, I would need a real person to push me out of this funk, past this pain and into a world where exhaustion doesn’t dictate my daily life.

I spent a week with a trainer named Ali. She was great and pushed me just enough to slightly frighten me into thinking I had a cerebral spinal fluid leak but not enough to actually get one. After 3 workouts with her I was ready for the “women’s only program” which I assumed would be decidedly less intimidating than working out in a room drowning in testosterone. The first workout involved pull ups, dead lifts and jump roping. It was hard. By the third set my body felt unfamiliar, my breathe was uneven, my arms tired, weak. I hardly recognized my own body. I felt like I could do this but each pull towards the bar and my body caved. In the end the stellar trainer Tracie gave me a little push, lifting my body through the workout. She helped me and pushed me and I finished. I was in last place but hey, I was done. I had finished. I left that day in a state of euphoria. While I was forced to recognize that I was severely put of shape and more debilitated by surgery than I had ever imagined, I was fighting. For the first time since this whole shitshow started I actually felt brave. I was fighting my body, I was doing it, I was taking it all back. I was supposed to go to three workouts this week. I only made it to two. The second, well that involved jumping and given that my pain has been steadily increasing for the last two weeks the combination of little sleep and a forgotten ibuprofen dose meant I was in pain. I didn’t register the problem immediately but the workout included box jumps (which have caused me to fall and fall hard before) and on each jump I felt my brain slamming against my skull. And no, I don’t know that is actually what happened but that’s what it felt like. Boom. Jump, step down. Breathe. Jump. Boom. Step down. Ow. So between each jump I muttered f&$k you Herbert under my breathe. I finished the workout. And now, as I sit here covered in icy hot I recognize that skipping today to heal from yesterday was not the epic failure it felt like. Rather, it was me, patiently fighting. That’s what this journey is about, the journey. A journey predicated on patience.

Patience. Ugh. I used to snarkily tell friends that it is a virtue. I was always good at waiting , waiting in lines, waiting for change, waiting for life to happen to me. but is that really patience or is it resignation? As for Virtue… I have not felt virtuous. I have felt altogether impatient. I don’t have patience for well meaning friends who muse about the meaning of life, love and friendship. I don’t want to muse. I want to heal. I don’t want to question the reality and construction of my life, I want my familiar construct back. I either want that back or whatever epiphany I’m supposed to gain from facing my mortality and making it, to show itself. My epiphany is like a big fat coward hiding in the woods. “Show yourself!” Patience may very well be a virtue but it’s one that takes very real practice.

All in all I am doing okay. I still have pain from surgery. I am painfully behind in replying to emails, and in writing thank you notes for all the love and support. Just know, though I may have lost my patience I haven’t lost my sense of gratitude. In my continued quest to heal my body to heal my mind and in turn heal my heart I took on some physical change. I dyed my hair, changed the way I look. I suppose part of me hopes Herbert will go out and on his way home not recognize his host body…

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Either way, strong body strong mind, that’s what I tell myself when things get hard. And when my body fails? Well then I flip the script and it becomes strong mind, strong body. It’s a quest to see myself as a whole and then to accept that whole, that hearingless, lopsided, weaker than average whole. And to create it, into whatever I want it to be.

“Life isn’t about finding yourself, it’s about creating yourself” -unknown

Peace and love –

Samira

Oh hush

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I have had a lot of moments in the last few weeks where people somehow think that because I’m contemplative that I’m sad. I do, like any other human, on occasion get sad. If I didn’t, well that would just be weird. Then I’d be a weirdo, and I am for sure not a weirdo. I mean I’m plenty weird, but not in a strange emotionless kind of way. I not a robot. I would have to say however that despite moments of challenge before and after Herbert, I don’t particularly regret my life, I’m not sad about it and with each new challenge I’m set on making it better and better.

For whatever reasons I have made decisions that have led me here, and though in decision making I may not have always considered myself first, I am, by my own account, successful. I enjoy what I do, I feel challenged, I have fun. I think that is another reason people think I’m a bit nutso. People think I need to “lighten up” (for a really hilarious discussion of my dad’s campaign to lighten up send me a message) or “let loose,” I’m plenty loose, trust me. I mean, I watch Downton Abbey and I’m on Ethel’s side. (Oh come on, no Downton Abbey fans??? No? Bueller? Anyone?) I don’t particularly think that I’ve missed out on anything or really I may think that when I’m in the dumps, but what I really want to ask is that in missing out on some experiences, what have I gained? I never let my wild side out completely but I somewhat prefer letting a little wild out when no one is expecting it. I’m keeping y’all on your toes!!!!

I guess the point is, we all live differently and we all get to where we’re going in different ways and I suppose I don’t want to go any one else’s way. Nor do I expect all of you to go my way. I do expect us to be grateful as we realize how lucky we are to walk alongside each other. Anyway, I am grateful. For what? Well, for example I worked out today, first time to crossfit ever and first honest to goodness workout since surgery, and even though I thought I might have a heart attack, I did it and I made it and I will fight through to tomorrow. I’m proud of where I am, not just in my recovery but in general and I don’t regret anything because I’m happy here in this space, learning and growing amongst friends new and old. So, I’m not sad (though I appreciate your concern) and I’ll probably not go over some kind of crazy cliff (metaphorical or otherwise) in order to live a fulfilled life, I mean I already kind of jumped a cliff when I went bunjee jumping, and I jumped a cliff into the unknown when I came back to school and another when I let someone saw my skull open. I’ve jumped plenty of cliffs. Now? I want to peruse what I found when I stopped free falling. I want to see what I got to when I landed! See ya at the bottom of the cliff, the view is different but can still take our breath away.

Peace and love-

Samira