Supposed to be sleeping…

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Ermagerd! Erm gertting brain surgery terrmorrow!!!

I’m not supposed to be awake, thinking, feeling, typing. I should be sleeping, preparing for what some have termed “my big day” in the am, but I’m not. As soon as my head hit the pillow I was wide awake. First I sat here in awe of all the love and kindness that has poured out of my little community. Then I felt the warmth of my family and family of choice. From my brothers and sisters traveling through blizzards for me to the best friends that flew here to be my support system giving me hugs and glittery cards. I’m so lucky. So loved. I wish with all my might I could share this with all of you. This unconditional love. This is a live every human should experience. Herbert or no Herbert.

As I prepare for science to work one of its modern miracles on me for the first time in a long while I can see past the surgery. I can see the horizon. My faith in love, life and well, faith seems to have been restored. By you. All of you. Walking alongside me and sharing small parts of yourselves with me.

Thank you. And sorry for being such a crabby lady. Though I cannot promise the impatient bitch that lives under Herbert won’t reappear after my craniotomy…I know she’s still in there… Watching… Waiting.

In all seriousness, though knowing full well I am so blessed the last few days have tested my resolve and it took real personal work to see past them. Your love and hope was my beacon of light. With you guys beside me we will choke out Herbert. Snuff that mofo out.

With great gratitude, peace, and love – Samira

“The only way of knowing a person is to love them without hope.”

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I was working on a paper last night and I found that quote as I pored through the works of Walter Benjamin, trying to understand memory, love, images, hope. I still don’t understand but I found this quote very powerful. You see this weekend I found myself crumbling under the weight of the unconditional love being thrown at me from all angles.

Friday, despite my inability to reach a simple goal and finish my finals, I had my “Smell ya later, Herbert!” party. This after spending a lovely afternoon with two of my closest friends and truly mentors. They gave me party tips and let me vent. They shared key lime pie with me and it was delightful. After lunch, fighting with a shopping cart in the Target parking lot for a solid 30 minutes and a confused and haphazard trip to the liquor store, it was party time. It went off without a hitch. I had good friends all around, new and old, and I think that people really enjoyed such clean toilets to pee and poop in… JK But really, the party was fun. I had these pants on:

Yes, that is glitter.

Yes, that is glitter.

And, even though the glittery sequins between my massive thighs kept getting stuck together and pinning my legs together, I had a great time. It seems, so did everyone else. The best part? Though the party was about Herbert, or really my health, it wasn’t. It was about getting past it. It was about living beyond it. It was about loving each other truly and as hard as possible. Loving hard. We laughed, we smashed a brain pinata, we drank Sangria that was admittedly too strong. We even ate tacos at 2 in the morning. I woke up the next morning on a love high. I felt powerful enough to conquer anything. Though I did feel slightly slowed down from the Sangria headache left behind after I ate all the fruit out of the pitcher…Whoops. I set out that day for my acoustic neuroma support group meeting. Though I was wearing dirty clothes off the floor, my hair was unkempt, my make up undone, I felt radiant. I had love. Love given to me with no hope or expectation of return. It was unconditional. There were no expectations that I would do or say anything, just that I be and that we all laugh. I wore the sweatshirt I had been wearing all day in planning my party, it read “Take a Chance on Love.”

Take a chance on love. And even more, take a chance on life. The acoustic neuroma support group that was facilitated by the Acoustic Neuroma Association was in the modest lobby of a building in the DTC. I came in cautiously, nervous for my first group support session. It felt like I was in a movie and magically I had the script memorized. “Hi what is your name?” asked a lovely woman named Roberta. “Samira.” I quietly responded. She shook my hand strong, and lovingly. “Welcome!” she said enthusiastically, “are you pre-treatment or post?” I was relieved. The pre-text of explaining what was going on, the constant downplaying and smiling was not required. Roberta knew, she understood. She had been there. Literally. I met a room full of women who were strikingly older than myself. I was the only one in the room who hadn’t received treatment and given that the next support meeting is not until March I felt blessed that I had come across one just a few days before surgery. I met lovely women. That took my hand, held it just long enough to say hey, I get it, like actually and if and when you need me, I’m here. I got to try out a baha hearing device, which, even with my serviceable hearing made a substantial difference and suddenly, I was excited. I got this. I can hear. I got this. After the meeting and chatting with the women beside me several of them came to me, one at a time, telling me what surgery was for them, wishing me luck, telling me my attitude was just in the right place and giving me knowing, confident glances. It was so powerful. One woman, a beautiful and radiant mother of two, who had the biggest AN of anyone at the meeting, offered to call me the night before my surgery as Roberta had done for her. It was amazing. I walked out thinking, I took a chance, and it paid off. I am already grateful for that phone call, though I haven’t been able to bring myself to talk much these days. I’m grateful it is coming, and oddly, I am looking forward to it. I know it will help. I know it will make it easier. I just know.

That night I went to a Christmas party for my Dad’s rotary club. Again I was surrounded by love and suddenly I began to feel suffocated. There were many people whose love and presence was welcome, expected. The long family friends, the RYLA companions, my professor who changed the way I see and understand the world, that made me know I could be great. I expected and even hoped for their support. I was endlessly grateful for their support. Then… there were the strangers. No, Herbert is not a secret but he is is mine. Herbert is mine BUT HE IS NOT ME. I am not the sum of my brain tumor. I am more than that. Suddenly normal mingling had shifted to sad, pitiful eyes. I’d say my name and quietly hope the hot pink lipstick would distract from my sparkly sweatshirt and lululemon pants I had tried dispassionately to pass off as dressed up, or really just dressed. AS soon as my name was uttered this happened:

“Oh no… I heard. The brain tumor.”

“Yup,” I would respond. “It’s just a blip in the radar, my journey on the path to life’s next great adventure!”

“Oh, that is so sweet, you aren’t even sad. It’s just like the time I broke my femur.”

“On no!” I said “You broke your femur? That sounds terrible. Just awful!”

Then we’d talk about a femur. Or a shoulder. Or someone’s self-described mediocre son, looking for a date…

By the end of the night I was exhausted. I was unpacked, papers were unfinished and I had nothing left. Two days of very little sleep, lots of work and endless socializing had caught up to me. I chatted with my beloved brother for a few minutes where he shared, gave me advice and indicated his deep love for me. He called my blog “living out loud” which in my mind made me chuckle. I’m not trying to live out loud here, I’m trying to live along side. I am trying to walk alongside anyone and everyone who has ever felt challenged. I am not expanding what is private I am showing the world that the things we reserve just for ourselves and our select family of choice can do a world of good for everyone else and for people to see, we all have challenges. Some great, some small, but all significant. My thoughts here are measured, and your responses are humbling, thoughtful and I learn from them as I hang on your every word. I tried to go home, to sleep one last night in my own bed, and I couldn’t get out of my parents gate. Suddenly I stood there, in the dark, and cried. and screamed, and stomped my feet. I wasn’t sad, I wasn’t even angry. I was so confused. So much love, so much good, so much support and it was pouring over. There was no way to contain it. I was literally crumbling under the weight of the love I was given. I didn’t know how to be gracious with it, I didn’t know how to let it all in and share it. I didn’t think I could do this all of a sudden.

Then, after a long drive back to Boulder, I realized something. It is because of this love that I can do this. I absolutely can and I will and I will turn around and I will pay it forward and give it back. Hell, I’ll give it left and right, frontwards and backwards. I’ll love you all , all around, all day long.

I arrived in Arizona tonight. Jason, my parents and I are staying in a lovely little condo with a creepy horse painting on one wall, opposite some parrots on the other wall. The wildlife really doesn’t go together but nevertheless it is quite lovely. I just read 2 of the nicest emails I have ever gotten and after swallowing my emotion so I don’t cry until I swell beyond the parameters of the MRI machine, I decided to update you guys on how I am doing. I can feel the anxiety rising in me each night and every morning. Throughout the day I am able to camouflage it, though I am better at that around some of you more than others. Tomorrow my siblings and family of choice begin to arrive and I am grateful that each of them will be here to offer something different. I hope that I can give it back to them in some way. In the morning I’ll get pre-surgical testing. Wednesday I’ll meet my neuro-otologist and then Thursday is the big day… It is surreal to get so close to something that always seemed like a far away thing we talked about but never did. Like my trip to Hawaii. I talk about it all the time. Haven’t done it… yet. Though I can feel my body becoming nervous, I am doing okay. I am beginning to get concerned about what the heck my loved ones will do during the surgery, I hope they can relax and act casual. And I hope they know that no matter what the outcome, even if I can’t hear them tell me and I can’t hear myself tell them after surgery, or even if it comes out of a weird little Quasimodo face, I love them. I love them without hope and expectation. When I say that I am hopelessly in love with the people who support me, it means that nothing can break it. Nothing can change it and no one will shift it. It is an honest love, unencumbered and messy. It’s real, and it is ours and each day we learn from it, grow with it. So thanks. Thanks for the love. There is so much of it I hardly know what to do with it all.

Peace and love –

Samira

Smell Ya Later, Herbert!

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The toilets in my house are really clean. Like seriously clean. Eat off me, rest your cheek on my seat clean. Disinfected, gloriously shiny and smelling like the janitor just came through clean. Why? because I cleaned them. Because it was mindless. Because it didn’t involve facing anything. I can’t face it. I can’t face finals, I can’t face surgery, I can’t face the impending doom that is my personal life, I can’t do it. I don’t want to. I won’t. I’ll tell jokes, I’ll laugh, I’ll act casual. Hell, I will even clean toilets giving you the most luxurious throne for shit you’ve ever seen, but face this? My life? My crap comes at you from every angle and just when you think you’ve figured out how to pretend long enough to laugh genuinely your heart stops you in your tracks life.I can’t face that. Sure there are moments of compassion. The students telling me I will be okay, thanking me, ME, for teaching them. It’s astounding, humbling, flattering. Then there are the friends that walk to Starbucks with me in the cold, let me selfishly complain, talk, gossip, chatter, never telling me that I am too obtuse to ask about them. Those are true moments of me, the old me, the pre-Herbert, never considered my mortality, lived to help others me. Then I come home, to my reality and I’m just damn pissed.

One week from today I will be super nervous, trying to go to sleep, trying not to think about it. Trying not to focus on surgery. What’s funny is I don’t feel scared right now, distracted? Yes. Scared? No. Super distracted. Yep. It’s the last week of courses and in the mad dash to get everything done in time to leave for Arizona with a clear mind I made the slightly awkward decision to throw a party. For Herbert, to get rid of him. You know, because I hate him. But the thing is, I don’t, you can’t hate something that is a part of you. You can’t hate yourself, something grown from you. Hating Herbert would mean hating myself. I can’t do that. I just can’t. So I pretend that I can’t hear him, swooshing around in there. You know all things need rest, so give it a rest man! Please! I pretend that brain surgery is the same as going to the park, or meeting up at a Starbucks. What are you doing Tuesday? Oh, huh, really, uh huh, shopping, eating, dinner date. Oh yea, me too, that plus brain surgery. Uh huh. No big deal. Ugh. UGH. I talk about it like it’s commonplace, try to normalize it. I joke with near strangers about it. The people closest to the situation really don’t seem to think my apocalyptic turn for the worse sense of humor is so compelling. My, I hope I don’t have a Quasimodo face after surgery jokes shifted to a dark place. I start sentences with statements like, “If I live to my birthday…” and end them with things so casual that it throws people off, “…we should get pie!” I would like some pie, though, seriously.

I am super excited for my party. Perhaps the only silver lining I can see right now is after the hell that will be the next 48 hours of final writing, I get to have a party. An act I have never undertaken in a home of my own. Herbert made me grow up, socialize, maybe have a beer. Plus, I am assuming that in not being able to face ANYTHING real happening in my life I can fill my days with idle distractions. Pretending that okay is the norm. Never making it quite to great but never reaching bottom. I can do okay for a few days. Then, I’ll get my skull sawed open and see if things change. Or if I change, and instead of cleaning toilets, I clean up my act and be the woman I know I can be.

Peace and love – and shiny porcelain seats…

Samira

Going it alone

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It’s rare that I find myself completely alone throughout the day. Generally Jason comes to visit a good bit or I am at school surrounded by my peers and students. Yesterday was a bit different. I went and taught like every other Thursday but when I arrived at my office hours, despite the pleas of students to make time for them, no one came. The surrounding offices did not have their normal light pouring out of the cracks in the doors. It was just me and some distant foot steps. After a while the space filled up, the students showed up and after a busy hour I went home to continue working from there. I thought that I would get a nice lunch for Jason and I, but he had gone home. So I went to Safeway, picked up a TV dinner and sat myself on the sofa. Alone. Like everyday my sisters called, one to tentatively update me on the condition of our beloved Teddy and the other to just catch up. Each time I talked on the phone and hung up, the silence was palpable and it registered in my mind that I was still alone, so I curled up on the couch and let my exhaustion of cramming finals into the last week take over. My productive plan for the day quickly deteriorated. I slept, waking up disoriented to a text message. Blah. How did I go from being fully surrounded by love to feeling so fundamentally alone. Then some people popped up pushing their own stuff aside to help me take care of mine and it meant so much. See part of the reason I felt so alone in my emotions was that I wasn’t getting valued by someone in my life. The way I valued them has never been the way they valued me back. Calling in their times of crisis, I sit with them on the phone even when I have not a lot left to say. I expected that in return but was met with fairly oblivious responses to my texts, and IMs. It really got me down. I was just angry. I thought about calling Jason to complain to him, but the poor guy listens to me complain a lot. I decided his ears needed a break. So again to fetal position on the couch I went. Then I got a hilarious message on Facebook from a friend. It looked a little something like this:

Bahaha

Bahaha

After that I got a call from a good friend who, despite having a lifetime’s worth of experiences happening to her in the next month, let me talk, and she listened. I realized I was not so alone as my little pathetic mind was making me feel. I was ok. I thought back to all the kind and warm messages I had exchanged with friends. I had let one bad seed ruin the bunch. Is that the saying? One bad apple kill the seed? One poison apple get eaten. I have no idea. Maybe there is not a saying. I had let all the good of all the amazing people around me be overshadowed by one bad seed. This is not to say that everyone can’t have a moment of non-supportiveness. It’s perfectly natural. What I have found through this experience is most people don’t know what to say. They don’t want to hear about it. It’s uncomfortable, so when they call to check in they don’t even ask how I am doing until the conversation is about to end. It’s awkward. If the conversation turns to Herbert I have a tendency to crack a joke recognizing how uncomfortable my companion has become. I “act casual” so that everyone else stops acting so awkward. That’s why it is refreshing when people cry with me, laugh with me or just admit to me, “I don’t know what to say.” Because if you said that to me, instead of glazing over everything and anything genuine or real, I wouldn’t force you into making me feel better, I’d tell you, “I don’t really know what to say either. And that’s ok.” After my pity party was cut short by the love of my friends, I got off my ass. Sure, I went to the mall, but at least I went somewhere. With my oldest sister manning the phone to shop along side me, I did some retail therapy…it was only marginally effective, but I do have some sweet glitter leggings. Ah, distractions.

In all seriousness, it makes me think of a conversation I had with my sister the other day. I was obsessively checking on Teddy and after a while she asked me what else was going on. Likely a welcome distraction from Teddy’s plight for both of us. I told her about the upcoming ANA meeting. It is a support group for people with Acoustic Neuromas. I was so excited to get the invitation. I am so excited to go. I had told my sister that though friends and family are welcome I wanted to go alone. I wanted to do this alone. She responded, in typical classy bedside manner, “just know that no matter how you go to the meeting, we’re all behind you, you’re never alone.” Never alone. But this is my fight. I want to go it alone, right? Wrong. I want to walk in strong, independent and solo, but not alone. Knowing their is so much support behind me gives me strength going forward. Yea this is my fight. My fight. No one can battle it for me, but that doesn’t mean that I can’t have my army behind me, propelling me forward. Especially on my bad days. I can stand alone and have everyone beside me, that is how strength is born. It’s born from love.

Whether it be a study break hike with my brother or the endless conversations with my sisters, or the chats with friends who are willing to engage me, to be real with me, I am surrounded with love. And a lot of it is coming from places I would never expect. The friends of friends that have gone through brain tumor/brain surgeries of various kinds. From the message last night that made me forget how truly f*#king loud Herbert had been all day, made me forget that my face was throbbing on the Herbert side (coincidence? I think not). The message expressing friendship and compassion. Wishing me luck though I had never been there with that person to wish them luck. It was genuinely kind. To the message I got this morning, another person sharing their story. I’ve read it and re-read it. I’m letting it marinate before I respond. It inspired me, captured my mind for today, won’t let me go. I have people popping up everywhere. It is a family. A family of survivors, supporters, warriors. Standing behind me as I move forward, whether it be to a meeting or my surgery. And their recognition, that wherever these amazing, phenomenal people go, I will stand behind them. Loyal member of their army. Even when we stand alone, we’re never going it alone. Never.

Peace and love –

Samira

Tugboat Jenkins

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About 8 or 9 years ago I met someone really special. His name is Teddy, he is a dog, a cocker spaniel that like his name is as cuddly as a teddy bear. I first met him at my parents house when his owner Ramin, a gentleman that worked for my dad, brought him over. He had a haircut that made him look like world’s cutest ottoman and he wore a red and blue sweater. He was very shy, scurrying away from all the new people as I raced down the stairs to get a better look. When he finally saw me he decided to give me a chance and scurried his little self over to me, wagging his nub of a tail ferociously. I pet him for a moment and then Ramin scooped him up and took him away. Fast forward a little while and my sister and I are living together in Boulder, life was changing for us and it appeared for Ramin as well. I had just moved in and my sister and I were adjusting to life as roommies and friends. Looking back it was a great time of life. Ramin was going through changes too. He had to leave the US and he couldn’t take Teddy. So somehow, miraculously, after a lunch at Chipotle, Teddy came home with my sister and I. Of course we both claimed him as ours but in the end we realized it didn’t matter, he was just family. Why couldn’t he have 2 mommies. It’s the 21st century after all.

When we first got Teddy we went crazy trying to think of names, he was ours, we should name him. We tossed around so many ideas the most popular of which was Tugboat Jenkins. First name Tugboat, last name Jenkins. It just didn’t fit. He was too fluffy, too cuddly. He was our little teddy bear, through and through. Teddy he was and Teddy he would remain. Teddy provided for a lot of great memories for me of my time in and after college. From the time he pooped in my bed leading my sister to flood the laundry room in a botched comforter washing and I slept with poop in my bed for a week without knowing it, Teddy always made us laugh. He was smart, ringing a bell when he wanted to go for a walk, barking at strangers, protecting us, cuddling up next to us. Exercising patience with us as we struggled to clean out his consistently infected ears. They smelled like cottage cheese and still do. Mmmm cheese ears. You couldn’t come home without Teddy rising to greet you, running and jumping so high he almost took flight. When you’d go out-of-town he would lament for days upon seeing a suitcase being packed. One time he even tried to prevent me from leaving by camping out behind my front car tire. Giving me a look like, “Hey bitch, try and leave but you’ll have to run me over!” So I sat on the sidewalk with him, snuggling until the very last moment. When it rained and thundered Teddy snuggled a bit harder. When you played the piano he came to listen. When you were scared he knew. He would come sit on your feet, with his back leaned against your shin and wait. Just being present in a way that no human could. Just protecting your heart with no expectations for you to explain yourself. Letting you be, knowing you had someone there with you. He got me through some of my worst times of life.

Teddy lived with my sister and I for years, then college ended we all moved and Teddy became a world traveller. He spent several years with my sis (the genius paving her way through the medical field), several years with me and my parents in Denver and now he lives with my sister as she goes through the last bit of her residency. I always figured Teddy would come back to me. I face time with him and bark at him through the phone every chance I get but generally when I hear his name I miss him so much I either shower people with incessant stories or start to cry. Each time I visit my sister I cry hardest when I leave Teddy. I can’t tell him how much I love him, because it is more than words. I know when I leave my family we will talk each day on the phone. We will be okay. Teddy is harder to get a hold of. As Teddy has aged his health has deteriorated. He has a fairly rare disease that is attacking both his skin and his liver. He’s not doing so well. Though my sister assures me he still has moments of happiness despite the pain he must be in. With this comes the responsibility of any person with a pet in their family to decide how to make the latter part of Teddy’s life more comfortable for him and it is not a fun decision to make. For me, I feel sad for my sister, while I know he is suffering, she watches it each day and from 1500 miles away there is little I can do other than hope for a chance to visit him and to send him and her my love and support. I’m pretty sad about it, as is the rest of the family. It’s hard to see an animal suffer. Partly because they can’t tell us but partly because they can’t reach out and say, “hey, enough is enough let me go.” We have to be intuitive with them, know their hearts and recognize the changes. My sister is a doctor so she is good at taking care of him but that doesn’t make it easy.

Teddy is still with us and what will happen to him is anyone’s guess. It’s a day by day thing I am told and it takes everything in me not to call up my sis every 2 or three minutes for a check. I feel guilty for not being there with him, but I am so grateful for his life. I am not writing this to get answers or to express my emotion about life transitions. What my goal is to share the story of a life, one that still has a bit of magic in it. Of a best friend, of a child, of a support, of a family member who protected me, loved me and played with me in a way that was more than anything else I could have asked for. No one has ever been as excited to see me as Teddy is, each time. I miss him everyday!

I’ll end with a fabulous Teddy story. My mom made beef ribs one night. I had to miss dinner because of work but came home to a plate ready for me on the counter. I decided to eat in the living room with the rest of the family. Teddy ever the beggar, followed the scent and came and sat at my feet, just salivating over the food. Then he got up and sat slightly the one side of me and stared at me from the side. “Oh Teddy, you can’t have this!” I said and just thought he was positioning himself in the most sympathetic angle. Then as soon as I had that juicy, saucy, fatty delicious rib in my hand and was slowly bringing it towards my mouth, Teddy leapt through the air (all four paws in the sky) and snatched it perfectly out of my hand. It was so skilled, so practiced I wasn’t even mad. He has strategically stolen my rib and to be honest, I was damn impressed.

I wanted to visit Teddy but my family is concerned with my upcoming surgery and my mad rush to get my finals written a week early I won’t have the energy to go and come back and that it will drain my health. My view, it’s worth it. Why should Herbert get in the way of one of the best friendships I’ve known? Suck it Herbert. Just suck it. We’ll see if I make it to share my love with my beloved Teddy in North Carolina, and in the meantime I will wait for a miracle to happen. Until then, I’ll just be glad to have shared his story and the joy of it with anyone and everyone willing to listen to the story of a beloved friend and pet.

Me and Teddy on Persian New Year

Me and Teddy on Persian New Year

Peace and love –

Samira

SHUT UP! I can’t hear you…

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I wrote a version of this blog this morning. It was eloquent, well written and just so funny. It got deleted. Thanks for nothing technology! So I am here again to give you none of the wit and all of the meaning. Okay, maybe some of the wit, but I spent so much of it in the last draft, I can’t promise you wit at this stage of this Sunday.

Before I get into the plagues of losing your hearing slowly and with full awareness of every change let me just catch you up on my week, which, all things considered was not as bad as it could have been. I decided to do a detox, and on day 1 (well the end of day 1) I puked so hard. SO HARD. I am not sure if I recaught the flu from myself or if I was allergic to the shakes and bars and I’ll be honest, sort of not willing to eat them again to find out. Just no. Why? Because I looked like this:

So hot right now...

So hot right now…

and I slept here:
ahh the lovely space outside of the bathroom door...classy place to sleep

ahh the lovely space outside of the bathroom door…classy place to sleep

It was uncomfortable and after 2 days of no food, relative shakiness and intense bitchiness (I’ll claim this was caused by my sickness) I came up with what I think is a genius plan for the future. At least the forseeable future. You see, I spent the better part of the last few months trying desperately to control everything. To find the right answer, like somehow, if I willed myself hard enough I would figure out how to go into this and have no side effects. To have it be a blip on the radar that no one notices. That’s not real life. What is real life is not being able to control everything but learning how to enjoy what you’ve got. So, even with something as small as diet, I am going to eat like nobody’s business. It is going to be good. I am going to be sooooooooooooooo happy. Proof? I bought 1% milk instead of skim AND to add to the adventure I bought yogurt with fruit on the bottom! FRUIT! That’s right, you heard me.

Ugh, you heard me. I can’t hear you. Not really anyway. I’m going to explain my new found desire to have everyone look me directly in the face when they are talking with a situation I think most people in the Western, developed, technologically connected world can relate to. You know those moments where you are on the phone and someone says something and right as they do they cut out? Or even worse they put their fat thumb over the speaker and you can’t hear them? You say, “Hey pal, sorry to make you repeat yourself, because that would be the absolute worst thing ever, but I didn’t catch what you said, do you mind repeating it?” So they do and DRAT! you miss it! Shit. It’s a bit awkward but you ask again, “Super sorry bud, but I missed it again, one more time, service must be bad.” So they do and WTF the phone cuts out. AGAIN. What. Maybe they are just a mumbler. Maybe they are playing a trick on you. Maybe they should send it in a text if it is that important. It’s a bit embarrassing but you say, “Hey, so one more time, give it to me again dear friend!” Despite all your attempts to smooth over the lack of ability to hear with patronizing synonyms for friend, they have gotten annoyed. How can you tell? Though you can’t understand that mumblers words, you can get their tone. There are a couple of things you can do at this point… hang up. Opps! Bad Reception! You can give a canned response like, “OH REALLY!” or “Oh? Really??” or “Oh! Reaaaallllyyy….” Or if you are feeling extra ballsy you can just make a statement. Declarative and straight forward like, “I completely agree with you, you radiant genius of a human being!” Or you can flip it the other way, “HOW DARE YOU DEAR SIR!” Either way, you gotta do something, or ask for a fourth repeat, then they’ll hang up but you won’t be offended because you won’t hear it click. Clean out your damn ears. That’s what a lot of my conversations are like. But I can’t blame the service or call back when reception is better. I just can’t hear. I can hear a lot, just not everything, especially not in a crowd, it’s hard on the phone and if you are sitting on my right side? Move. I can’t hear you if the TV is on and you are talking and I get kinda mad about it. Not at you. Just in general. I can’t hear you. I might agree or nod or frown or squint but that should not be taken to mean understanding. It’s not. I don’t understand you! I can’t hear you. Or maybe, just maybe you haven’t told me what I want to hear yet.

We hear what we want to right? Maybe this is my body and my hearts defense against bad news, conflict, disagreement, uncertainty. Maybe it is my way of dissociating from the startling reality that my vision of my world is not a practical vision of my real life. It had to change. All of it. Not just because of Herbert. I mean, he is an asshole, but he is an asshole that wouldn’t exist without me. He’s part of me and I decide what I do with what I’ve been given. Yea, I mean Herbert moved in without consent and he does block my ear canal and is quite rude about intercepting my previously well heard messages but he was raised that way. The cells that divided into him never taught him right from wrong. Some cell’s divisions, I tell ya. But really, I can still think, I can still feel and most days, minus the headaches and the tinnitus, I can hear. But I don’t always know, understand or accept what is being said.

Overall it’s been a pretty good week. I had a few moments of why me, woe is me, why can’t you just fix it and one pretty substantial but short-lived cry fest at a concert when the box office told me I had no tickets and I couldn’t hear what was being said and some drunk but lovely women had to come translate the English being spoken into louder English into my left ear. I had a moment of well crap this is what it is like not hearing, but then I heard the music and dried my tears on my scarf and listened to The Killers with all of me. I felt better, I let myself go with the music and then, then there was confetti and fire works, so all in all, a good night. So the point? The point is that though I may not always be able to hear you, or understand you or maybe sometimes I’m just not ready to hear you. I am listening. I am listening with my whole heart. I’m also trying with everything in me. to confront my fears and just live. Take that Herbert. Jerk.

Peace and love – Samira

Stuck on the wrong side of a rom-com ending

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You know those perfect romantic comedies. You know the one’s right? The story where two people meet and it’s kismet, instant connection, sharp wit and endless hijinks. The couple is invariably torn apart by a stupid friend, a drunken mistake or a disastrous bout of physical comedy induced accidents. In the end they always find each other. It always ends with a kiss and stops at happily ever after. Happily ever after. Well wtf happens after that?

They met, the fell in love, then they… got married? had babies? stayed in limbo? moved in? ooh made dinner? WHAT THE HELL DID THEY DO AFTER? The worst of these are the lifetime movies, the abc family made for TV holiday flicks and just regular dramas hell bent on a happy ending. Those end with a kiss after a horrifying bout of disaster. How many things go wrong before one can go right? The movies tell us how to get swept off of our feet. They tell us how to fall in love. They don’t tell us what to do after. They don’t tell us what to do when we wake up and can’t decide which step forward is the right one. They don’t tell us what to do when our paths start to converge and shit gets messy. They don’t tell us what to do when one of us gets a weird somewhat threatening but totally benign brain tumor. They don’t have a romantic comedy for that. They don’t tell us what to do when you are stuck in that bit after the credits roll and the projector flicks off. Do you move relentlessly forward with the love predicated on that happy ending kiss? Do you give yourself over to sickness and health with or without vows? Do we expect from one another what we expect from the characters so readily caricatured for us? How do we know when the vision of what we have for our lives, built on media, built on stories, smash into the reality of what our lives are. This is more than just love. It’s not just romance. I mean sure, sweep me off my feet. I want that, what self respecting person doesn’t? But what about in those moments where no one has the energy to do the sweeping? What then? Where’s the movie about that? I can think of a couple examples of films where families get sick, loved ones collapse and thier partners or families rise to the occasion. Abandoning their mistresses to be by the side of a dying wife or shaving their heads to look like their sick sister. And those gestures matter. I know that. Hell, I have friends at the ready waiting to shave a 2 inch by 4 inch section of their hair to help me rock my surgery scar with confidence. I have a friend that tattooed herself with me. I tattooed myself! Those gestures matter. But they don’t fix anything. So do we wait for a big sweeping moment? Or do we add up the tiny moments, the ones that make us smile, the ones that make us cry, do we consolidate those to create a vision of our every day? Or do we wait for the fairy tale ending? The fairy tale beginning? Is there a fairy tale at all?

One of the closest people in the world to me is an unrelenting cynic. Me? I believe in people, in humanity, in hope. Despite all the horror I read about, the strife I have seen around the world, I believe we can do better. I can understand how that seems crazy to him. Often my conversations with this special person end with him shaking his head and telling me that I can’t rely on fairy tales, to be grounded in reality. Sometimes I argue. Sometimes I accept what he has to say. Often I roll my eyes. Why can’t life be a fairy tale? Why can’t we treat each other in a way that makes it feel like we are flying, carelessly above our worlds in pure bliss. At very least why can’t we strive for that? If you shoot for the moon you land in the stars right? Let’s go to the stars! Yea the movies don’t tell us what to do when the fireworks are done exploding, but maybe that is a sign we need to set off some more? Why can’t we stay in that movie moment where the big things fall into place and so it is so easy to recognize the beauty in the small stuff? Does it always have to be so hard?

I don’t know where I am going with this other than to put out there that the confusing mess that is life can be really beautiful. If we make it that way. I don’t know. Maybe I am just so loving because I am calorie deprived, or cheese deprived, or candy deprived. Stupid detox. I am in love and in hate with it. Blurg. Whatever. I don’t know. Let’s leave it there. Let’s all go dream of our fairy tale. Not just the ending, but the whole thing, the journey is all we have. If we’ve reached the end, we’ve got nothing else to talk about.

Peace and love – Samira

Watch out! The Cranky B*tch is back!

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So the euphoria and tryptophan of Thanksgiving wore off, and left in their wake a horrible stomach flu that is spreading like wild fire to all of our friends and family. It also left behind a rather cranky, bloated, and easily annoyed b*tch…. Whoops, at least that positivity lasted about .2 seconds. I do what I can.

Though I am back to bitchy (that would be an excellent name for a song)I am not entirely hopeless. Cranky and hopeless exist on vastly different planes, so you can be simultaneously hopeful and excited while becoming very easily annoyed at every well meaning person struggling with the flu. Tomorrow I start a detox with a group of friends, propelled by a lovely woman I know from high school (she writes a FANTASTIC blog – check it out! http://msmorphosis.com). I am excited about that. I am excited to find a way to take back control of my body and have some people to be accountable to. It should be really fun, though I say that now and I am well fed and have easy access to candy, sugar, and endless amounts of meat. Take that away, ask me to add two shakes of discipline and willpower and maybe my hope will go out with the candy. We’ll see. I’m really looking forward to the whole thing… call me crazy, but I am. I’ll keep you posted how the whole thing goes. When you see a fit, skinny, cranky lady walking down the street, it’s probably me. Wave at your own risk.

A lot of stuff went wrong today. Everyone is puking. So there’s that. My brother in law collapsed at work from awful back pain. So there’s that. I cried spontaneously while working out because someone made a comment about how my movement made them upset in their peripheral vision. So there’s that. And it all seems so dramatic. SO DRAMATIC. It really shouldn’t. What’s the big deal, it’s just some puke, pain and inability to control one’s raging hormonal emotions. NO BIG DEAL. NBD. NBD for sure. I do some of my best thinking when shit goes bad. I was thinking today about how much of the things I’m mad about today were with me all along but I failed to see them. I didn’t recognize that people had small amounts of pain, I didn’t see them building until it was too late. I didn’t notice people getting irked until they were mad enough to explode. I didn’t notice Herbert until he built a high rise next to my brain, even though he made plenty of noise in construction. I just didn’t notice.

There is a This American Life episode, a live show they did in theaters, called The Invisible Made Visible. It’s a series of stories about the things we just don’t see. Here’s an excerpt “And today on our radio show, we have all kinds of stories of people trying to take things that are normally invisible to them and make them visible. I’m talking about unspoken feelings. I’m talking about people’s secret lives.” There is SO much that is just not visible to us. Things we choose to ignore, things we see but fail to acknowledge and the things we don’t have space to see. It’s interesting to think about when we choose to see those invisble things. When do they find meaning for us? Are we waiting to be ready for them? What made me see Herbert? What made me see someone in pain and give them a hug? What makes the scores of strangers who share intimate life details with me, from the woman at the gym, the man at the nail salon, or the mom in the grocery store, feel ready to share? Why now? Why with me? What makes the invisible visible to us?

My favorite part of the This American Life episode was David Rakoff’s piece. Rakoff was a famous author, known for his sharp wit and cynicism. His ability to weave a story was without compare. His vocabulary was unmatched, he was a true wordsmith. I say was because he has since passed away. But in this episode, he was very much alive. He tells the story of what happened to him after a surgery that was part of his life long battle with cancer left him with a flail limb, a dead arm. He talks about how daily tasks that were so frequently taken for granted became tiresome and annoying. In his own words “Oral hygiene. Hold the handle of the toothbrush between your teeth the way FDR or Burgess Meredith playing The Penguin bit down on their cigarette holders. Put the toothpaste on the brush, recap the tube, put it away. You really have to keep things tidy, because if they pile up, you’ll just be in the soup. Then reverse the brush and put the bristles in your mouth, proceed.” Not impossible, just annoying. But in his dreams, in his dreams he can dance, like he used to. His movements are not methodical and calculated, but free. He describes this dream and then, just when you think he is going to walk off stage, just when you think he’s had quite enough, he’s awoken from the reverie of his dream and back to his reality, he dances. He gracefully owns the stage, moving back and forth, elegantly, stylishly. It was a performance that certainly brought me to tears and I had no handicaps to speak of when I saw it. It was beautiful. David Rakoff died shortly after this performance. In a This American Life episode dedicated to David, they play a story where he recounts his first experiences going through radiation, his first bouts of cancer induced anger. He describes it here, “They say that times of crisis are the true test of one’s character. I really wouldn’t know, since my character took a powder that year, leaving in its stead a jewel-bright hardness. I was at my very cleverest that year– an airless, relentless kind of quipiness. Every time a complex human emotion threatened to break the surface of my consciousness, out would come a joke. Come on, give us a smile.” I related to that. Rather than address any of the boiling emotions that bubble right below the surface I tell jokes. So dedicated am I to my humor that I tattooed the word laugh onto my forearm, neglecting to realize that strangers will look at my body and be compelled to laugh, at me, and my body. For no reason. Perhaps it may not be the best way to deal, but it is my way to deal. It is my way of making the invisible visible. I am seeing what my illness is, it is inscribed on my arm, permanently. So I don’t see it how I should or how many might want me to. So I can’t address my emotions with any degree of sophistication. Who needs that? Who needs sophistication when you are laughing so hard milk comes out your nose and you think, “hey, I wasn’t even drinking milk!” That joke must have been really funny. I don’t deal, I quip. When I try to deal it brings this terrible lull over the room.

Take my thanksgiving toast for an example. My dad starts us off with a cheers and thanks to all for being here, blahdy blahdy blah… No one is more excited to eat than me but I stop us. “um…er, um hey, I would like to say something…” My father gives me the go ahead, I wasn’t really asking for it, I was going to say my piece whether they wanted me to or not. “Um, so this year has been weird,” Oh crap, that wasn’t how I wanted to start. I should have written this down. I have some solid one liners in my phone, I should pull it out, meh, too much work. I continued, “a lot has changed…” I wasn’t exclusively talking about Herbert here but to list anything else seemed to cumbersome as my audience and myself were already beginning to cry. Except for the more awkward of them who seemed they either had a joke on the tip of their tongues or they were going to crap their pants from their discomfort (or their flu). “So with everything changing (SOB), the one thing that hasn’t changed is our family and the love we share. I just wanted to urge you all to take in these moments, to be present, because we can’t ever get them back. This, here, this is all we have. Cherish it.” Then it got incredibly awkward, my sister made a joke that our tears would oversalt our turkey and my mom’s bestie (yea, mom’s have besties too) decided to raise a glass to my health. Well that certainly was not the point of that toast. Epic fail, now it was awkward. I nervously set about eating as much as I could, as fast as I could. So sincerity and emotion, while one of my strong-suits only serve to make things too real. More real than anyone wants them to be. So I veil them under jokes and rather bitchy mannerisms that admittedly take getting used to from the peanut gallery. It’s not much but it is all I can do to make Herbert, in all his invisibility, visible. Because, afterall, you can’t face something that you can’t see.

Peace and love

Samira

Thankful

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Tomorrow is thanksgiving, and while I cannot give up my harping that it is a holiday based on the sugar-coating of a deep history of violent colonization which has now become an excuse for us to propel ourselves forward into gluttony and greed, I also think it is a valuable opportunity to tell the people you love how grateful you are to have them without them looking at you like a total weirdo. You can call someone up on or around thanksgiving and say, “Hey, you…yea, you! I’m glad you are around, I’m thankful for you.” Any other time of the year they may slap you upside the head and exclaim, “You poor sappy fool, you are at it again. Have you been drinking!?” Ok, maybe the exact reactions will vary depending on the degree of sappiness you and your loved ones are already prone to, but generally speaking, people can be put off my true, genuine, un-censored love. Which is a problem, but a problem that is exasperated by our constant drive for individual success and wealth. So we take a break each year (hopefully you do this more than once a year but if not, let the Turkey take you there) and love each other. Hopefully, thanksgiving is for you, as it is for me, a moment to cherish family. To cherish love, the cherish the gifts we are all given. Even the most unfortunate can find hope in the darkness and be thankful. I saw it first hand in the eyes of the women who had suffered violence in Northern Uganda, I saw it in the faces of the people in Denver living in a motel with no food for the holidays and I see it now, in my slightly a-symmetrical face. No matter what you are confronting, big to small, see past it, look around it, look under it or over it, but find the faith and the hope in it.

For those of you more worried on thanksgiving about your perfect pie and potatoes, relax a little. Even if it tastes like crap, people will tell you its delicious. Trust me. And, if it tastes like crap, it probably needs more butter. Trust me on that too, me and Paula Deen. And if none of that helps you, be thankful that you only have to make a weird congealed pumpkin pie once a year. Make the holiday less about food and football and more about love. Be grateful.

Obviously I am less angry and tired than I have been in a while. Two days of the stomach flu and a week off of school lets you know that what you are consumed with is not the biggest thing in the world. It’s just a hiccup, a bump in the road. So instead of being angsty about Herbert, I am taking this opportunity to be thankful. For you. You reading, sitting at your computer, hunched over, hanging on my every word. Yes, you. I’m thankful for you. You and your ability to walk along side me in this journey. You for being forgiving of me not knowing how to face you with my news about Herbert. You for being there for me when I found out. You for hugging me when I was too awkward for words. You for annoying me to the point I wasn’t mad at Herbert I was mad at you. You for sharing your story with me. You for keeping your super awkward story to yourself. You for your hopeful spirit. You for your endless resolve. You for sitting with me in my fear. You for making me laugh. You for listening to me cry. You for loving your family and showing me how. You for getting a tattoo with me! You for calling every night. You for the lunches full of laughter. You for the funny videos. You for showing up at every moment. You for putting your phone down and looking me in the eye. YOU. All of you. Thank you. Thank YOU so much.

So here I begin a running list of what I am thankful for…

I am thankful for my parents. Their devotion, not just to me but to all of their kids and family. Never in my life did I think I would learn to appreciate them as much as I have. They are my life, my light, my love.

My sisters – your conference calls make me laugh and cry. Your worry, your friendship, your love, I’m so lucky. I was born with the 2 best gal pals just waiting for me. Ready to be there, good and bad, ready to love me to death and annoy the crap out of me. You are perfect.

My brothers – you both give yourself over to others in your jobs, serving them, making them well, stronger, better, smarter, but it’s like you never even realized you had done that for all of us long ago. You were both heros before you ever “saved a life”

My love – laughing with you makes life worth living, you are relentless in your drive, your ambition and your warmth – I’m thankful to have that around me. I carry you with me everywhere.

My friends and family – I got lucky to have all of you. ALL OF YOU

My hearing – I mean hey – if you’ve got it, flaunt it!

My mostly symmetrical face – again, if you’ve got it flaunt it (note: as I type I am doing a little diva swish with my head)

My dog Teddy – your little wagging nub of a tail is the best.

Airplanes – they bring us together

Dinosaur jokes – they make us laugh

Turkey – thanks for sacrificing yourself so we can eat you.

Music

Target stores- I know, my love of Target is pathetic.

24 hour fitness – gotta get that yucky energy out sometime!

The internet – ahh thanks for connecting us WWW

My heart – attached to you – present, living in today, not worrying (at least not right this second) about tomorrow, just enjoying this, THIS LIFE, this moment, here with you.

At the end of the day though, the thing I am most thankful for, is YOU.

Peace and love

Samira