Thankful

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

Pissed off-edness, tempered by hope

I thought, upon writing my last post, that the next post I wrote would be some kind of optimistic testament to the gestures I have taken to be in control of my destiny. I got a tattoo, I got a permanent representation of this journey on my body, as a reminder to let laughter flow endlessly from my heart and fearlessness into my heart. And while it has been a positive gesture it just served to cement the reality, the permanence of what I am going through. What was a gesture of retaking my body simply helped me know that I can't. I thought that this moment would be cathartic and while I am so happy that I did it, the results were not so clear cut as I had hoped. My response and my reaction were and are bound up in bigger discourses of control, health, family, guilt and representation. Being a scholar, I should have recognized that no analysis is so black and white. There are no absolute truths and we must operate in the grey spaces in between meanings we hope for and meaning we have.

I also thought this post would be about the process, the journey of transformation but it was overshadowed by several things. The largest of which being my anger. At who? I don't know. Just in general. I'm just pissed. Where did this anger come from? Well, it has arguably been bubbling right below the surface for some time now. Getting a diagnoses and trying to laugh through the pain has gotten me through a lot but it won't encompass the whole process of recognizing those things that "never could happen to me" happened to me. Ugh. Then Sunday I got news from my father that a man that I greatly looked up to had passed. My heart dropped. At 70 years old he had lived a good life but one that still had much potential for greatness. He was a man that inspired me to change the way I approached the world. He advocated for me and so many other people like me through his absolute devotion to Rotary's youth programs. And he is gone. It made me stop and think that I should have let him know, before he was gone how amazing he was and how grateful I was.

Not too long ago I went to a graduation party for another impressive and amazing rotarian who acted very much as a mentor to me in my life. At this event people walked up to a microphone and announced openly and with warm, loving arms, how much this AMAZING woman meant to them. When thanking people she said she was lucky to have so many wonderful things said "this side of heaven." She was blessed to feel so much love in this lifetime. It makes me wonder why we are that way. Why is it we honor people in death and not life? Why can we not embrace the people we love fully in life? A student recently met with me and I was inspired by his amazing attitude in the face of adversity. He has dealt with serious health issues of his father who, due to a tumor on the spinal cord, has become paralyzed. He said to me that he "can't be mad about what he can't control." And he was right. He also asked me to help him make sense of the way the media treats people in death. Having lost a friend in a violent way, he was shocked to see the media attention devoted to her in death when the media "really didn't care about her before," Her and so many like her, disenfranchised with no where to turn. No advocates fighting for people in life. And yet, he wasn't mad, he wasn't angry because it was not something in his control. I pushed him, to recognize the power of his voice. That he can change how we see people in life and in death. That we can and we must be our advocates in this life. IN THIS LIFE. And he pushed me to let go. To relinquish control.

I remember sitting next to my brother several years ago at a funeral of one of his friend's father, a family friend and neighbor. Through his gritted teeth and with tears in his eyes he implored me to live this life. He told me to make sure not to let anyone take it away from me. To fight for this life. It's all that we have, it is all we are sure of. We must live it to its fullest. For years I planned a tattoo of that phrase on my body (don't worry Mom and Dad - I'm not getting another one just yet;)). I felt I needed a reminder to live this life in a fulfilling way. I later realized my family and friends are those reminders.

I guess I have had some optimistic revelations this week after all but I have also been fighting an UPHILL battle. I worked my ass off to prepare a solid class for my students - as I do every week and only a handful of them were prepared and it triggered in me a desire to push them rather than implore them to like me. I abandoned my desire to be well liked and decided that they needed to fight for their knowledge the way I have. To take advantage of opportunities and make the most of every experience. I suddenly wanted them to know that they must show up for me to show up. They must be present or the whole process is a waste. This was after news of my loving friend and pet Teddy's sickness. Hepatocutaneous something something. It's not good. It's not fair. Teddy is a good dog, he shouldn't suffer. Teddy's prognosis came on top of a battle with the scheduling department of my own doctor's office. For all the praise of Dr. Spetzler, I have been less than impressed with his office's handling of my situation. The inability of the staff of a hospital/doctors office to show compassion to those who are grapling with difficult realities baffles me. Why work in an office that is supposed to save people and then strip them of their hope. To think I was excited to schedule my surgery. Now, I am just frustrated. I don't want to be that person that people think of and think, "wow she just can't catch a break." So I'm not going to be. I decided to snap out of it. I decided that despite all of this SHIT ( I mean let's just call it what it is, it's SHIT) I am lucky.

My mom often tells me something in Persian, "Nashokri nakon." Translation? Don't be ungrateful. So here are the reasons I am lucky. My FAMILY - a mom who fights for my hope, even when I can't find it anymore. A dad that patiently listens when all I can do is yell about everything and nothing because the pain in my head is too loud. A sister than calls and worries about me even when there is nothing to worry about. Another sister that tempers my anger with her patience, her cadence drawing me back into reality. A brother who makes me laugh, makes things casual, but guards me with everything he has. A brother in law who is patient, willing to listen, ready to help. A nephew who reminds me that sometimes life is just as simple as playing with our dinosaurs. A neice who in the words "DA DA DA DA DA DA" makes my day. And a boyfriend, who just lets me be me, endlessly flawed as I am, accepting me for my humanity, praising me for learning to stand on my own two feet. I'm grateful for them. I am grateful for every friend that let's me vent, that checks in, that bothers to care. For the friend that is patient when I spontaneously cry (in a crowded restaurant - mind you!), patient in holding my hand as a shift my reality, my framework of how I see myself. I am grateful for the texts that come through all the time asking me how it all went, how it could go and how it is actually going. I am so grateful for opportunity. I am grateful for the chance to get up everyday and learn, to better myself and the world around me. I am so grateful for the roof over my head, the endless physical manifestations of the immaterial blessings. I don't really know if I believe in God but I believe in luck, fate, destiny. Why I was destined to be on this path? I have no idea? But I won't let it strip me of what I have. Of who I am. If I change from this it will be for the better.

That doesn't mean though, that I won't have moments of anger, of ferocity, of fear and of confusion. But I am trying, to let the laughter flow and bravery in. To be brave. That is my endgame. In the meantime, I'm a bit pissed off. Wishing I could just go back in time, to my life before, but I am tempering that with the knowledge that this too shall pass and that I will come out on the other side and at the end of the day to see myself as anything but lucky would be just plain lame.

It's confusing right? All this hope entwined in all this anger, confusion and an endless stream of jokes (I will laugh my way through every day - no matter my mood). It won't get any less confusing - I don't think it will at least, but I am doing my best at being alright.

Peace and love -

Updates - all things Herbert, Samira and life in general

I hadn't realized how overwhelming my trip to Arizona had been until I came back and began to process it. The reality of a diagnoses and what that means to an individual are hard things to understand. The reality of being differently abled than what you are accustomed to is scary, even if the consequences of a diagnoses are minimized by the notion that it could be worse.

I went to Arizona with my Dad and Jason on Thursday to learn more about the famous Dr. Spetzler of the Barrow Neurological Center. Having heard so much about him I had anticipated the experience to unfold in a certain way. I had a vision of him in my mind, an expectation set up. I am not sure if the expectation was met but I do know that he will be my brain surgeon. You know when you hope if you say something enough times it will stop being scary? It doesn't work. I have tried to wrap my head around the notion of brain surgeon and brain surgery so many times. I've tried to normalize it. It's not easy. It doesn't ever feel normal to say, "Hey you! Yea you, guy in the weird blue surgical bonnet... Come over here! Talk to me for a minute or two so I can decide if I trust you enough to let you cross all of my personal boundaries, cut open my skull and muck around in my brain! Nice white coat by the way!" And before you can even finish the sentence they are out the door. On to the next set of scans. Dehumanized masses waiting for cures, for treatments, for salvation. With 29 doctors operating out of the Barrow Center, the waiting room was just that. Huddled masses, the sick, obviously trying to conceal their nervousness or on the other side of the spectrum they sat, so adapted to "sickness" that their presence in a doctor's waiting room was commonplace. Their supporters, helping with paper work, standing at attention when their names were called, holding hands, patting backs, helping their poor, sick counterparts navigate this system. It was all too much. The wheelchairs, the canes, the eye patches, the facial lags. How is this my life? How is this where I am? I mean, I just have headaches, there is just ringing in my ears. This place with these sick people, I can't possibly belong here. Right? Or do I have to come to terms with the fact that I am only okay with notions of disability because I am able? What will happen if and when I am not? So step one was the waiting room and getting through that, especially since we were 2 hours early with no where to go, and it felt like a marathon.

Meeting with the doctor was strange, brief and somewhat mechanized. I had to meet the man I was going to allow to cut my head open. I couldn't go into this without some insight into his humanity, his way of knowing, I had to use my intuition to know what was right. His fellow came in first, and with a somewhat patronizing tone discussed my symptoms with me. I gave him my ever growing list of symptoms. Instead of seeing me as a woman in tune with my body he dismissed even the most relevant symptoms as potentially caused by anything. To cause me to feel stupid and a bit infuriated that my hearing loss and vestibular disfunction, though potentially caused by anything, were not really being attributed to the GIANT TUMOR growing on those nerves. While I recognize the desire of medical professionals not to want to make promises, the notion that the symptoms that led me to discover Herbert could be anything and that they can't tell me what surgery would do for them was just downright exhausting. And upsetting. I know I am not a doctor, but I am also not an idiot and I know my body. I know it well. I listen to it. Despite the condescending nature of the fellow, he seemed smart and probably quite capable. Dr. Spetzler was different. Very even keel, very confident. When asked if he was the best at what he does he mumbled a quiet yes. Yes. He is the best. Why would I walk away from that? His affect was good. He was decisive, he was clear. He didn't seem in the least concerned. Though, when he identified what is already signs of facial weakness and I jumped up exasperated to look in the mirror on the wall, he couldn't help but crack a smile. Oddly, the doctor mockingly laughing at my exasperation at potential facial weakness made me feel good. I was pissed when I saw what he saw though.

There are some adjustments to my overall expectations. I had hoped that the best guy in the world would say, "Hey Samira, seeing how awesome you are, we have an awesome result for you. We will take Herbert and massacre him, but don't worry we will save your face and your hearing. You will be tumor free and go on to live your life on the path you always imagined. Go on! Return to your previous life devoted to the plight of others. No more of this confusion about what it all means! We will fix it!" But, um, he didn't say that. He did give me hope to keep my hearing on my right side for longer than any other doctor had, and without the risk of radiating my brain. How you ask? Well he wants to leave Herbert in there. At least partially. He wants to take out the really scary parts of Herbert, what I am assuming is his fat ass, and leave the rest. This involves leaving the part on my hearing nerves and also involves the potential for the continuing presence of my symptoms. BUT, I will get to hear and smile and maybe Herbert will realize that once he gets his ass removed he won't want to grow it back. It's like free lipo. Who wouldn't want that? I can tell you right now, Herbert is a shallow son of a bitch. That being said, I was glad to FINALLY have a doctor talk to me about hearing preservation. Dr. Spetzler was the only one to say that, even the doctors here that advocate debulking (aka ass-ectomy - the removal of a tumor ass) had told me to give up on hearing. Which was generally a bummer. Dr. Spetzler was different. He knew more. He seemed to have such a solid grasp and his fellow spit out some very promising statistics. With that in mind, I am hopeful about surgery but am also staying realistic. I am tempering my expectations with outcomes across populations. I am treating this whole thing like a science project. One that I am seeking to win a blue ribbon with.

So life goes on as normal. I am almost fully nocturnal now, I am perpetually naseous, so Zofran is my new BFF. I am contemplating a tattoo (to the dismay and confusion of my parents) that is another attempt to regain control of MY life, MY body, and MY identity as a woman living with a diagnoses. Given that surgery won't eradicate my tumor, I have to live with Herbert for longer than I had hoped in some form or another. I have to be patient with him, my little uninvited guest. So I work, I workout and I try to maintain a baseline level of normal. I've done an okay job at it too. I think.... I hope, anyway.

I am also contemplating taking this blog public. While I originally started it to inform my loved ones, through joining the Acoustic Neuroma Associations support group and talking with other patients I have learned so much about myself, my diagnoses and how to cope. So maybe I can pay it forward with my story, in all of its gritty detail. Just a thought.

Peace and Love

Samira