One month out

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Tomorrow it will be one month until my surgery. This time next month I’ll be pretending to relax in a house somewhere in Phoenix while everyone nervously flutters around me. I will be in a panic. Today, I am already likely panicking. Or maybe not. I spent most of last night and today sick to my stomach. Is it Herbert? I’m not sure, his pushing on my brainstem and relentless commitment to my vestibular nerve could be the culprit because the incessant spinning I thought I had mastered has returned full force. Maybe I have the flu, maybe I was poisoned. Who knows. Either way it has been a less than ideal way to start my Fall Break. Not much of a break really, the looming weeks of finals ahead are weighing heavy over my mind. Then it occurred to me somewhere between the Netflix I was watching while lying in fetal position and my trips to the bathroom where I laid on the floor in fetal position, that it’s almost time. It is almost time to face what is happening. Ouch, the stomach pain gets infinitely worse when I think about it.

I started being scared less of the outcome and more of the process. I had been so concerned about the endgame that I failed to think about what it would be like to be there, to be put under, to relinquish control of your body and give yourself over to an “expert.” I am not so sure I want to do that. I am not so sure I have a choice but if I did I would chose to not have this in the first place. I know, wishful thinking, right? Wasted time is what that is, we can’t live in what ifs, it’s just wasteful. Just torturous. I am terrified of going under. Starting a day in one way and ending it in another. It’s strange. It’s like flying, you wake up in one place, go sit on a place and go to bed in a new place. It’s strange, it’s often disconcerting, isolating, you can become wholly disembodied through the process. How can you find solid ground when things keep changing?

So today I mostly slept and then got irritated when people told me that, no, you feel fine, you are fine. The incessant desire to glaze over what is happening with some kind of faith in something unseen to me is just annoying. You don’t “know” that I will be fine. No matter what you have been through there is no undeniable truth to what you have to say. You don’t have a guarantee, you don’t have a good answer for me, bring me an expert, maybe then I’ll listen, but you? You don’t have an answer for me. AND PLEASE, stop regaling me with stories of all the people you knew that had ear infections and couldn’t hear and got their hearing back. Is that what is happening to me? Oh, is your friend’s wax buildup equivalent to the growth that is systematically finding ways to demolish my brain to make room for it’s new condo complex? Herbert is both squatter and real estate developer. AND HE IS NOT GOING AWAY. You can will me better all you want, and I appreciate the thought and gesture behind it, but fundamentally denying the truth of my situation, building me up with a false sense of security and hope? That is not optimistic, that is unrealistic. I’ve spent weeks preparing myself for the various REAL outcomes and refuse to back track. I am moving forward, with Herbert, with my new normal. THAT IS OPTIMISM. Accepting your conditions, you life, your fate (if you are dead set on having some kind of certain reliance on the spiritually unseen) and living with them. Living a full life whether you can hear about it on your right side or not. That is belief, knowing that you can make it despite the insistence from your body that it is tired. I can live with this, hell, I can confront this, but that doesn’t mean it is not real. Pretending it’s fine will get me NOWHERE. Stop pushing me to change my attitude. My attitude is fine. I laugh daily, I cry seldom. I try like hell to be self reflexive. I am facing life HEAD ON, I am not skulking around, I am not giving up, and I am not pretending that nothing will change. I am owning my future, whatever it may be. I invite you to do the same for your life. Own it. Face it. Be who you always wanted to be.

My blogger profile begins with the quote “here she lies where she wanted to be.” where she wanted to be. Not where anyone wanted her, not where fate placed her, not where Herbert thought she would be. HERE I STAND, WHERE I WANT TO BE. I am taking my power back bitches, and ain’t nobody going to stand in my way. And no, don’t correct the grammar in that sentence. I know, I did that for effect. Seriously.

I don’t know more than I did about my future this week versus last, I don’t understand my diagnoses any differently but I do know a few things. I am strong, I will fight for me and I will be amazing. I am committed to myself, my family, my friends and my health. I am committed to you if you are committed to me. I know that when I go into surgery I will be surrounded by so much love that I won’t be able to give up when I feel scared. I know that I have a lot of people who care. I know I care about them too. I know that people mean well when they use their various tools for coping to change what this means to them. To argue my future, my present, my condition. So I know I don’t fault them. I know that this month will likely be hell. I know that I will have good and bad moments. I know that in the end, it is out of my hands. It is in the doctor’s hands. Maybe acknowledging that I can’t do much now would be relaxing but that is not really my style. You know, relaxed… I’m more the compulsive worker outer, organic eater, and workaholic type of coper. But can you blame me? I am owning the only things I can. I hope my six pack makes it through the surgery. I wonder when I can work out again after it’s over?

One month out you guys, home stretch. Or is it just the beginning? I guess we’ll see.

Peace and love

Samira

Brain Tumor Thursday

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I recently joined the Acoustic Neuroma Association as a member in order to gain access to their community because I had heard it had helped many people. Unfortunately I had some trouble accessing their site so in some of my more needy moments, I began looking elsewhere for a virtual brain tumor community to share with and learn from. I didn’t want to go to Facebook, it somehow seemed like reaching out to my Facebook friends was both too intimate and too strange, maybe a TMI situation. SO I went to Twitter where the relative anonymity of me to my followers and the potential reach of a message seemed much more promising. I hesitantly began to share this blog as well as use the hashtag #acousticneuroma. I started searching for other hashtags and came across #BrainTumorThursday. That was on Wednesday, so I thought, I better start following some of these folks before tomorrow! SO I did and I woke up to the Twitter equivalent of a warm welcome from @TumorWarrior.

It was a good way to wake up, though I am still not convinced there is much universal advocacy work that needs to or can be done in regards to brain tumors I do think it is valuable to have a community around the issue. Initially when diagnosed, I treated my tumor like a closely guarded secret. I told people not to tell then wondered why people didn’t want to know. I held it close to me and hid the potential it caused for disability. Shadowing myself from the outside glare of the judging public. That was very isolating. Very lonely. What I realized was that much of my hope had come from those that were willing to share in my journey by telling their stories online. I spent hours poring over the internet, meeting and connecting with people through YouTube and random blogs. I started to feel less terrified. There were also strange moments, glancing through the tweets on #BrainTumorThursday that talked about how unfair it is that there was no cure for cancer. This evoked many emotions for me. First was a sudden pang of guilt, like my benign tumor was not worthy of being in conversation with these more serious tumors. That there should somehow be a ranking of disease is inherently problematic. It is like when people empathize with me by sharing their own stories and start their sentences with things like, “not that it compares” or “it is nowhere near as bad as what you are going through.” Why not? Every experience is valid in its own right. Why do we think that some experiences are more valid to process than others? That I felt guilty for not having cancer was very strange. I snapped myself out of that shit real quick.

Of course our experiences range in severity and seriousness and that is fundamentally true. But our experiences and their authenticity are personal, individual and contingent on our cultural experience. We shouldn’t devalue our lives and our experience because it could be worse. And in the same breath, I will say we should also take that perspective that it could be worse and learn from it, and work to make it so it is not worse for anyone, anywhere, ever in the world. And I will agree, cancer is UNFAIR. Do I think it is unnacceptable that there is no cure? I think that is a loaded statement. Who bears the burden of finding that cure? IS industry preventing the cure? Is there more that can be done? As an academically trained brain I can’t just say that anything is unacceptable. EVERYTHING IS UNACCEPTABLE. And with that being known we should all champion our causes. We should all find things we care enough about to think they are unacceptable and use our platforms to communicate and build community, mindfully, carefully, and thoughtfully.

I’m glad to have found #BrainTumorThursday and hope that the community will be as happy to have found me. The power of social media you guys, it’s happening. This is happening. I don’t know you, but we share something in common, or at least kind of in common, our brains and our bodies are at risk, now let’s be friends.

Peace and love – Samira

Inspiration comes full circle

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I’ve been writing for the last few months for 3 reasons. The first was to put words to the confusion, hope, patience, impatience, and struggle I had pouring endlessly out of my heart. The second, to inform those around me about what was going on, to not have to worry who was in or out of the loop. The final, and arguably most important reason, was to pay it forward. I was more okay because a few strangers shared with me. One via YouTube, another via a blog. They talked about symptoms, side effects, etc. I wanted to be that resource for someone else coming into this. Maybe my process could make theirs simpler.

So here I sit, in my bathrobe, procrastinating, not getting dressed because my phone dinged an email, from a dear friend sharing a personal struggle. I am patiently searchingly mind and my heart for a response that fits the one she honored me with, I’m learning to be patient with my responses and to let the thoughts flow when they are ready. So for today I decided to be mindful of her, to keep her present in my mind today and see what it evokes. I can abandon my selfish melancholy for a day and send my hope, my energy to someone else. Then as I began the day with that intention set I opened Facebook and this photo was the first post on my stream. It seems the universe is trying to inspire me to shine a bit brighter today. I’m not going to stand in my own way, not today at least.

Peace and love – Samira

oh boy….

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So remember those tumor moments? Well, I do. How do I remember? Well the thing is I think they are becoming more frequent. Or maybe, as some are pushing me to believe, I am just more in tune to them. Either way, shit is happening all up and down my world. I am like one walking tumor moment, head to toe.

Let’s start with sleeping, no big deal right? Wrong. I originally heard the tinnitus in my ears while in bed. I even tried to convince myself that it was some kind of a noise coming from my bedroom since I only ever heard it when I laid down in there. Well, it is still there and now it is accompanied by the occasional dizzy spell. How a person has dizzy spells while laying down, I have no idea. It’s like I am in a perpetual drunken state with the spins… So, while I was sleeping, fighting myself for the covers, I SLAMMED my head into my bedside table. Boy, what a tumor moment!

I routinely walk into walls while coming down narrow hallways. TUMOR MOMENT! Walking in a straight line? That is a thing of the past. Today I even walked to school with my shoes on the wrong feet…tumor moment? I don’t know if being generally confused about getting dressed was one of the symptoms, but I am going to roll with it.

I could sit here all day and list the moments that take my breath away, not because they are romantic and heartening, but because they are just so damn shocking, I can’t believe it is my life. I would list them all, but there are too many. They’ve begun to blur together. They don’t mean as much one by one and in aggregate they are proof of my need for a new normal. I am watching my body slowly revolt against me. I tell my eyes where to look but they betray me. I tell my feet where to go, but they betray me. I tell my pain to abate, but it betrays me. My mind, my body, they don’t belong to me anymore. I am bearing witness to the deterioration of a strong body. I have to hold on to walk down the stairs. I have to be mindful of what I drink and eat because the nausea is always right below the surface. I have to be mindful of things that never should have to matter. Generally it is scary, but I laugh about it, even when there is no one looking, even when it is just me, laughing alone. The lonely clown.

So what else is going on? Well, generally I am a cranky bitch. Yup. I’ve pretty much lost my motivation. It is that time of the semester that things begin to wane anyway but for me, instead of late nights working through the desire to give up, I am just giving up. Not outwardly. I go to class. I read just enough to keep up but I’ve lost my honest motivation to engage the material. I was the person who read, looked up everything in the readings, then re-read. Now, we’re lucky if I read at all. If I skim. I’m too tired. From what? I have no idea. I sleep when I don’t have answers to avoid attacking the people around me who are trying to love me. I draw lines around myself, around my heart. It’s too little too late, I think to myself. Where were you when I had nothing wrong with me? Why could you not emote then? Why is it that we leap to each other’s aide in emergency? Is this even an emergency? Is it even trouble? It’s fine, right? I’m fine. I think I’m fine.

I think I am fine and then I get up and fall backwards in my chair. People chuckle as a utter my new motto, “ACT CASUAL!” I don’t feel that casual. My body is slowly disintegrating under me. I have abandoned my healthy diet and thinking, propelling myself forward with candy and sweets, thinking, on the off chance I die, I may as well enjoy what I have while I am here. It’s really just pathetic. I know I’m not dying. But I don’t have the strength to fight my body, my heart, my mind and worry about appeasing the people around me. I don’t have the answers. I don’t know why I am mad. I just am.

Though I am walking around harboring anger I do have fun most days. I am laughing my way through this process and honestly most days the laughter reaches my heart. It absorbs into me. It lifts me up. Makes me recognize my luck, my life and my never ending ability to just act casual.

I think I know why I am so all over the place… why? Oh you want to know? Ok then. Surgery is set. I go in December 20th to get mah brain chopped open. NBD. I got this. But I didn’t realize having the date set would make it IMPOSSIBLE to think of anything else. I didn’t realize that now my minutes are consumed with thinking of what it will feel like, what it will be like and how I will heal. It’s just official now. Logistically, I’ll finish my finals, hopefully well, and then I will send them off into the ethos. I’ll head to Arizona shortly thereafter, preparing for 2 days of pre surgery poking and prodding, which will hopefully normalize this process so that my heart doesn’t stop the day of surgery. I’ve already asked Jason to make sure no one kills me on accident and he has promised to kick their asses if they try, so we’ve got all of our bases pretty much covered.

I dunno, I think I need to work out more but I did so many jumping lunges I can barely feel my legs. Whoops. So I sleep. Tired or not, to avoid being alone with these incessant thoughts. It’s not at all restful. It’s actually quite the waste of productive time. But I have always done well with time pressure. So, logically, if I spend all day sleeping, and wake up just before things are due, I have set up ideal working circumstances. This is just really smart. I am just really smart.

I don’t really know what to say. This is just a stream of consciousness post. There is not really any kind of moment of uplift or substantial lesson. Just a recognition that this is real. It’s official. It’s happening. And there is nothing to be said about it, it is what it is. In the meantime I will take advantage of what my brother tells me is the “Street Cred” that comes with having a brain tumor. I’m legit. Don’t mess with me. I got street cred.

Peace and Love always – Samira

Pissed off-edness, tempered by hope

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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 –

The power of family – where hope resides

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Very few people understand my relationship with my family, and very few people have made it to the category of family for me that are outside of my blood relatives, but for those of you that have, I hope that you have begun to understand the power of family, especially when it is like mine.

When I wake up in the morning I get dressed, go to work and wait, I wait for the most convenient time to call a) my parents – I don’t want to disturb them too early b) My oldest sister – she has kids to wrangle every morning so I give her time to get situated c)my big bro – his job being so demanding I try not to call during lunch so he actually takes a break and instead I opt to interrupt him in the middle of the afternoon or catch him on his walk home d) my next sister – her challenging schedule as a doctor and the two hour time difference makes it hard to catch her! and e) my best friends – including the man I love, and a handful of select people that have left such stagerring footprints on my heart that not to call them family would be doing them a disservice. These are the people I love like family, argue with like family, and go to when I need or can give support.

It’s nuts, right? I spend most of my day connecting, to people, to these people. My inner circle. People I meet and often those special members of my family of choice tell me that they “never talk to their parents” or they call their siblings on holidays. Their inflection often indicates that what I am doing is somehow crazy. I spend too much time. I spend too much energy. I tell those critics that if the worst thing you can say about my family is that we care too much then we are pretty lucky. Don’t get me wrong, we fight like any other family. We annoy each other, we push each others buttons. But at the end of the day we are there, for one another. We keep each other on track, don’t let each other screw up. We are accountable to ourselves but more importantly to the family.

At this point in my life and moving forward into the future, past the days where Herbert occupies my energy, they are the biggest blessing. My family, given and of choice. The people I care about innately and fully. Whether it is the complete devotion of a Dad to making his daughter better or a Mom whose beautiful spirit fills a home with hope and joy to the friends and siblings that call and sit on the phone with you quietly, when there are just no words. These are the people that make life what it is.

My life has been very confusing of late but one thing I have always known and always will know is that I am so blessed (if there is such a thing as being blessed) to have the people in my life I do. That somehow the universe gave me a family as amazing as this? Can it be real? I can’t and won’t and don’t feel sorry for myself when I have them. When they are around. They are my cure. Suck it Herbert, you are just jealous!

I guess for me they are a reminder to all of us to love a bit more fully. To recognize what we have before we can’t recognize it anymore. To be accountable to the people around us. To care. So many people have shown me so much love. Not just since we found Herbert, but always. I will pay it forward. And back. I will pay it all around. No brain tumor can stop me from who I am – my family taught me that.

Peace and love –

Updates – all things Herbert, Samira and life in general

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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

Head above water

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So recently things have just been plain hard. My spirits were relatively low and I had some pretty rough moments. Last week I flew to Poughkeepsie, NY for a conference. Before going there I had come down with a pretty nasty cold and couldn’t really feel my face because my sinuses wanted to explode. Between the cold, stress of giving my first ever exam to my own class and being totally unprepared for life, I had a lot of up and down moments. I was emotional and in this stage of reevaluating everything in my life. I would stare off to space and think, I never imagined my life, at this stage to look like this. And it wasn’t that I am somehow disappointed. I wasn’t and I’m not. Rather I was just confused. How could I know so much and yet so little? How is it that I just can’t understand? I was grappling with issues of love and commitment, health and sacrifice, reality and expectations, faith and the world. What did I even believe in anymore? I was and really still am confused.

I kept looking down at my hand where I had previously written the word “laugh” and it has washed away. Outwardly I have done a great job keeping up with the laughing and the smiling and the jokes but the veneer is beginning to fade. I just want my head to stop hurting. My new word is “Fearless” and it is on the necklace I have had around my neck since before I knew all I had to be fearless in the face of. I look down at it often, I hold it between my thumb and forefinger. I hope that I can channel that idea. I’ve been through much worse than this. I can do this. I know I can. But I am angry a lot and all of the other problems in my life, from minor to major now seem magnified. They somehow seem urgent to me. I have a bucket list to get to while I am still somewhat able. So I console myself with the notion that at least if I am all janky and messed up, looking like Quasimodo later, I can get a service dog to cart my lopsided ass around town. That’s a good silver lining right?

I think part of the problem is that I have no control. The things I thought I knew are not universal truths, they are constructions. I don’t KNOW anything. And the stuff that hurts most (physically that is) I can’t do anything about. I can’t get to the other side of my skull and pull Herbert out. He isn’t a scab I can pick at or anything I can see but I can sure as hell feel him. I want him gone. I want my life back. I want my truth back. I have to stop sometimes and realize that even the non physical stuff, the life learning things, I really don’t control those either… what the heck can I control?

I was sitting on the plane coming home from what was largely a disappointing conference and the stress of being away, not having all my right foods to eat, my painful cold, and sheer exhaustion. I leaned my head back in the chair and tried to close my eyes (I had wanted to read but the plane was enforcing sleep by turning EVERY light off). I finally lulled myself into some semblance of a sleep. I woke suddenly, awaken by my own crying. I felt like I was being attacked, every fiber, ever nerve, every last bit of the right side of my body was in violent pain. This can’t be real, I thought. So I just closed my eyes again. Had I not been aware of Herbert and his desire to attack me I would have thought something very serious was happening. A fleeting thought passed through my mind, that maybe I should ground the plane, I didn’t know if I could withstand this. But what would they do? No one can fix this. I buried my head in my hands and hoped the ride would end soon. And it did. Soon enough I was recovering and running across a new airport. The Detroit airport, which has a strange underground funhouse hallway with lights and creepy music, that is really not conducive to my condition… I finally begin to feel the pain alleviate and then my flight is called, I climb aboard, leaned back in my chair and there it was. It was back. Dammit! Excruciating doesn’t even describe it. My vision was blurred, my hands were trembling, my whole body was tingling. I was definitely afraid. I had to be fearless. I held my head in my hands and realized the positioning of my head impacted the pain. It was like with the increased pressure of being sick and being on a plane, the position of my head either really pissed Herbert off or made it so he could climb into his freshly cleaned sheets and take a nap, and get off my back for a while. So I stayed, hunched forward in my chair, the closest to fetal position you can get on a plane, and waited it out. It was like I was staring Herbert in the face and saying, “You give up, because I won’t! Stand down! Stand down!” Eventually, he did. I win this one, asshole.

I have had to give in to my utter mediocrity. I am not able to do what I was before, not because I can’t physically, but because navigating these emotional places takes a lot of time. It is exhausting. It is frustrating and it manifests itself in EVERYTHING. Even my bad hair days are a time of emotional devastation. Take for example this:

I mean who wouldn’t sink into a deep depression. I look in the mirror and I see this:

and it took so much combing and teasing to get to something as simple as this:

So what does my BAD HAIR DAY (or BAD HAIR YEAR 2012) have to do with my emotional state? Well, when the best you can do is just keep your head above water and your legs are tired from treading so long, and your head aches and your arms can’t splash anymore, every last thing counts. Every last moment matters. Every little challenge seems so big and yet so small and so you struggle to say, why can I not even handle this? This hairdo? Why does it matter? It shouldn’t, but it does. It’s that last little bit of weight that tries to drag you down and you can’t let it. So you look to your friends, as John Mayer says “Then the circle of your friends Will defend the silver lining.” And they do, whether it is Jason telling me endless jokes, making me smile all day long and proving his love in the funniest of ways, or my best friends text messages or funny ims, or little surprises on my doorstep. You see that silver lining and it pushes you back up. It’s like life’s flotation device. And it helps you keep your head above water. Way, way above water.

Tomorrow I go to AZ to meet with Dr. Spetzler. I am pretty excited and am hopeful he can fit me in for surgery during the holidays. Friday I will go back to Dr. Elliot to hear from the results of his gamma conference and see what the consensus of doctors said about my case, I have been putting this appointment off for a while. Then it will be serious decision time.

I hum this to myself sometimes to remind me that despite it all, we are here to share joy with each other and that is what I will do for you, if you keep helping me see how. “Pain throws your heart to the ground Love turns the whole thing around No, it won’t all go the way it should But I know the heart of life is good.” Thanks John Mayer, despite your weird racist rant and your strange public love life, your words give me comfort.

Peace and love – Samira

Doing anything but this, the diary of a diseased woman

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I have a ton of work to be doing. I mean, a ton. Like if it was not inside this computer it would probably weigh 2000 pounds. See, literally, a ton. And as I started writing this last night I was not doing any of it. I wasn’t even doing this, I had stopped blogging 2 sentences in. I don’t smell a Pulitzer anytime in my future… I wanted to be doing anything but focusing. If it was anything other than sitting in my melancholy, I wasn’t interested. Adding insult to injury there was nothing on TV. Since when did network television turn into 3 hour blocks of the same inane competition show? Why can we not put together quality programming anymore? What about story lines and character arcs? Give me someone to be invested in for longer than a 2 month competition in which nameless faces are replaced with more nameless faces. Dammit Monday night, you are a TV nightmare. I had already worked out, there was nothing on TV, reading, working or being productive were all out of the question so I had to find another way to waste time.

So I sat, with my thoughts, and sang to myself. Ever since I was a kid I have liked singing. Whenever I am sad music makes me feel better. It makes me hopeful or even in the way it magnifies my emotions it helps me heal. Since Herbert reared his big ugly head I have had a tough relationship with music, it’s been on again off again. Having so many emotions bubbling so close to the surface music just brought it out. How can I stifle reality if random singers on the radio seem to be speaking directly to me? How can I avoid the progression of what I have to deal with when the melodies are pushing me forward? It had become problematic but in my infinite paranoia I had decided that I have to sing before I lose the ability. I can already recognize an inability to hit a tone with my marginally diminished hearing. I can only imagine what it will be like when I am carting around my “dead ear” as the doctors called it. I prefer the term decorative ear. It’s not totally dead to me, it’s not like it will start decomposing when it stops hearing. It still will hold my earrings up. Plus I love a good pair of earrings. So I sang, to myself. At times I thought, this is ridiculous, but then I thought, this is therapeutic. It wasn’t like I sang while I did other things, I only sang. I just belted out. Most likely to the dismay of my neighbors. I don’t know if it made me feel better but it did make me see how I felt to begin with.

You see this weekend was different for me. It was not my regular “fun” weekend of studying and snuggling up next to a good book (or mediocre book, or text book, mostly just required reading books), I actually had to socialize. Which was great, I saw some of my favorite people and some I had lost touch with. I was there for other people, one of my favorite things, and I spent the weekend on my toes, presenting myself as the loving person I am. The person who up until the weekend was consumed in a selfish general hatred of all things healthy. I gave up my rage and replaced it with outward flowing happiness. And then, the weekend was over. Having come out of the safe refuge of my house and my homework I had started to let people back in. Not that the people I love most were ever out, all of you will never waver from the true center of my heart as you are all my world. But I had been isolating myself. And then I realized why isolation is such good protection, because when you turn around and go home you return to your “me” space. Which is great but being with people only serves to magnify that you come home alone. I worked hard to combat this feeling. I am overall, even with Herbert a very happy person, but I have my moments and last night was certainly one of them. I started calling all my “regulars” no one was picking up and then I just stopped trying because really I had nothing to say. What do you say? The immense love I was shown over the weekend, the consideration and compassion from a friend dealing with his own deep and difficult life moments, the love from a friend embarking on a new life’s journey, the hugs from old friends, those had sunk me into a deep funk? No way, can’t say that. I ended up silently sitting on the phone with Jason. Just sitting. It was better than sitting alone. Nothing made sense. Nothing. I mean why was The Voice on all night. Why did I have nothing to watch? Why did I suddenly think my deafness would take away my joys in life? Why was I so sad?

Blarg. Maybe it was just that I had a cold. Maybe it was just that I was overwhelmed with love and all I could do was collapse under the beauty of it all. I am not sure. I woke up today early, and got dressed up in another coveted outfit. I can’t leave these outfits for janky faced Samira, they have to make their appearances now. While I can still use my face as an accessory and while my ears can still hear all the compliments I am sure to get 😉 Jokes aside though, one part of the sadness I have been meant to face in this process of understanding my new normal is reframing myself as someone with a disease.

When you hear people talk about disease it can conjure up a lot of different images. For me I think of germs and outbreaks, people with SARS in their little masks. I don’t think of me. Normal old me. It had stuck in my head that a few doctors had referred to Herbert as a disease. I remember brushing it off, thinking no, he’s not a disease. I’m not diseased. I feel fine a lot of the time and even when I don’t, no one would ever know. Diseases are obvious, they are gross, they are what happen to other people. I, I am not diseased. So in an attempt to prove this to myself I googled it.

Define: Disease

Here is what I got back:

Aw crap, I think I have a disease. I had to sit with the negative connotation of this. “signs or symptoms or that affects a specific location and is not simply a direct result of physical injury” I had no physical injury and I am affected. Oh man. Then I thought, okay, well it doesn’t have to be such a bad thing. Then I had to stop myself from becoming that cliche where “my disease saved my life.” My life isn’t in need of saving. I don’t need to appreciate the people around me better. I already appreciate them just fine. I don’t need to be more giving, I give a lot. There is nothing left to give. I don’t need a disease to tell me what is important. I know that. Life told me that. Love told me that. My friends and family have always kept me accountable to them, to love, to life and to learning. You don’t need to be a victim to learn how to love. You just don’t. But that doesn’t mean I’m any less diseased. Ugh, at least you can’t catch it. At least in my moments of darkness I can say, “hey, it’s not my fault, it is just my disease.” I’m willing to bet that would shut up any critics real fast.

So last night I was a singing, diseased, procrastinating fool. And today? I snapped out of it. I have focused on school and class already today. I am working hard and on top of my game. I think I needed last night though, to help me understand. To allow me to sit with the state of my life and understand where it all can go. I needed to learn to live in the now, even if the now isn’t what I thought it would be when I spent my whole life looking forward to my tomorrows.