Rubbing it in

So you all know by now that it has been about a month since I found out about my new normal, my uninvited guest, my ole pal Herbert. In the last month I've gone through a variety of emotional states, probably enough to last a lifetime and I feel like it may be helpful to put some of them here. Perhaps to get them off my chest, perhaps because they might be relateable. Perhaps because I am procrastinating.

I was never the kid to go out and party. I always chalked it up to self-respect, high personal standards or a lack of interest. Really it was always an intense fear of getting in trouble. Things already seem to go wrong at every turn, I am always messing up, then to add alcohol? The few times I did I felt kind of blah.. Anyway, this brush with Herbert (asshole!) has made me wonder if I somehow missed out. This lack of reckless behavior, has it gotten me ahead? Why not do drugs if your body is going to betray you at every turn anyway? But then, suddenly I realized that I haven't missed anything. I am smart, I am committed, I am doing things right. I think. I am though, right?

Of course there was this awful moment, of why do all this smart eating, smart working out, smart learning, it seemed like a waste of time. How can I be the person to have walked a straight line and have this happen to me. Most of my "why me" moments have passed but I still fall into that space every once in a while. Self doubt creeps in, just as it does as every doctor asks me what my treatment choice is. Do I follow my gut or do I listen to what they say? Do I hurry up and treat this or do I wait? Do I cut and run because it's hard or do I stick it out? How I can really run from my own brain, I am not sure - but the heart can hide from anything.

When I am not in hiding, I am researching. Desperately, hopelessly looking for the perfect answer. I am trying to find the person who says, I did this, I had no side effects, and life is hunky dory. Unfortunately it looks like life is not hunky dory. It is okay, it is adjustable, but there is no easy path on this portion of my life journey. I haven't found the perfection I am looking for. The doctors tell me to temper my expectations, to be prepared for the worst and hope for the best. I've always lived like that, I've always been a worst case scenario thinker. I'm the one always looking for the quick escape in case of a fire. I'm good at bad. I am calm in crisis. I am excellent at grief. What a skill set, eh? I haven't found my right answer and when I am feeling dizzy (like today) and my whole head is tingling the way my feet do when they fall asleep (like today) and the pressure in my ears is so heavy I think my ear might actually pop off (like today) I recognize that I have to adjust. I have to say that this is normal and this is ok. I have to say that I can do this. I have to debate my own demons and I have to win. I have to throw this pity party and then get over it. While I haven't found any answers that meet my incredibly type A standards, I have found new friends, support in places I would have never expected and been given strength by the people I never expected it from. I have seen generosity and I have seen withdrawal, and I have seen that lots of you guys love me even if you are not willing to say it and that means something.

That being said there have been things that I feel like just rub it in. In class last week we read about neurological receptors and understanding of visuals. We looked at a multitude of diagrams of the brain - RUDE. Then in another class we read about biological determinism, health science - why are women more prone to certain diseases? Hell, I got no answers but I did find that women are twice as likely to have acoustic neuromas. Thanks gender. The worst of it? Apple. Yes, Apple, and their stupid new iPhone, with its stupid new ergonomic headphones that fit into all the stupid ears that can hear all that stupid content. (Whatever, I want that phone but not for the stupid headphones.) Being that I LOVE TV, it is almost always on in the background, my companion that doesn't talk back and it it does I can change what they are saying with the click of the button. But lately, no matter what I am watching, I feel like I am being attacked by functional ears. Weird, curly, freaky, cartiledgy ears. Like this one:

and this one:

so that they can fit this:

Everytime I see this commercial I think DAMMIT I hate you weird looking ears! But then my left ear is like "Hey! I can still hear over here, I want those headphones." And I just want my inner monologue to SHUT UP! Suck it left ear - it's not about you right now.

While I seem to think that the world and the universe is just rubbing everything in I recognize that much of this is all on me. The world is what we make of it after all. Some days I am better than others. The days where I am poring over doctor reports on surgery outcomes versus radiation outcomes can get me down. Other days I get a call from the doctor who is allegedly the best in the world and I count that as a victory. (YAY! Phoenix here I come!) Feeling genuinely happy for the first time in a long time. Other days I just try to remember myself, who I am, what I stand for and I hold on to it. I am lucky because I have people that love me that help me remember who I am. My family, my friends, my students. When I am with Jason the whole world melts away and it is just us. I can forget my problems and learn and grow with him like we've always done. I am so grateful for those moments.

Then there are nights like last night. Where fear creeps in and I am afraid to close my eyes. Where images of ears and deafness and loneliness creep in, where reality sets in, life sets in. And not the kind of loneliness any one can cure, it's a loneliness that seeks isolation. It's not just life with Herbert, but a manifestation of a life with no control, a life without givens. A life with no absolutes. I don't want to be around anyone in these moments so I watch shows and familiar movies. I am afraid to be alone with my own thoughts. I am afraid to succumb to what my mind and body think or know intuitively, so I stay awake. It is in these moments that I trace the word laugh with my fingers. I cannot tell jokes, I can not be the jester in my own life when I am all alone late at night so I laugh at mindless comedy. I am too tired to work by that time of night so I just watch, laugh and force my eyes open. At some point I lose this game and my eyes close tight and morning interrupts my dreams. Then I wake up, struggle through the day and give up my caffeine in moderation motto and suck down espresso like it is my job. In the light of day the fears the night brings seem ridiculous and Apple rubbing in my pain seems like such a joke, but in the night, the reality is there and I have to confront myself, on all fronts. I have to try to reconcile the girl who wants that new phone so bad with the one that doesn't understand anything around her at all.

Peace and love - Samira

Finding out you've been living with Herbert all along...

About three weeks ago I got some upsetting news. Well, actually I discovered some upsetting news with the help of Apple's facetime technology, a sister who is a pediatric geneticist genius, and an MRI film...

Let's step back a few years, a little bit less than a decade.

I was sitting in Mr. Cronin's french class and I felt a blinding pain on the right side of my head. I could barely keep my eyes open, I left class, went to the bathroom, splashed water on my face and powered through the pain. I didn't think too much of it until the next day, sitting in Mr. Cronin's french class it happened again. I thought to myself, this class must somehow be offensive to my subconscious because my body is reacting to it in quite a negative way. But then I thought, no, this class is great, I love speaking French. La tour eiffel! Steak frites! le cafe! Then it started happening in other classes, so finally we went to the doctor, they ordered an MRI and I remember walking up and down the crowded halls of my high school expecting the worst. A brain tumor... The MRI showed, well it showed...it showed, NOTHING. No tumor. Thank goodness! Oh but wait, my head still hurts! "Do you see halos in front of your eyes?" the doctors asked. "No," I replied. "Does the light bother you?" they asked. "No more than the light bothers anyone else," I replied. "Are you nauseous?" they responded? "No, my head hurts!" I emphatically replied. Well, given that I had no clear signs of migraines, I was diagnosed with migraines and went on a five year course of torturous treatment. Harumph. Slowly I began to naturally adapt to the pain. I made life changes, decreased my stress, learned to meditate. I became an advocate for my health and decided I didn't want to be on pills for the rest of my life and weened myself off of the hordes of drugs I had been recklessly given.

Fast forward 8 years of no depth perception, clumsy jokes, and intermittent head aches and I wake up dizzy one morning. Oh crap I think, it is the dawn of my second year of PhD school and I have jitters. Such bad jitters that my world is spinning. It'll go away once I get to class. Oh wait, nope, no it won't. It's just dehydration, it will go away with a solid nap and a large glass of high quality H20. Wait a second, nope. So to the doctor I went. I am pretty sure the loved ones around me thought my inner hypochondriac had kicked in, but in my heart I knew something was wrong.

The doctor did a hearing test - I couldn't help but think it was a waste of time. I have great hearing I thought, minus that incessant swooshing sound I have had in my ear for the last 8 or 9 months... the doctors had said it was water in my ear, or wax build up or an ear infection that was lingering. That is so not connected to this. The tester said her words and with my back to her I repeated them with absolute confidence... Her: "catch" Me: "caT" but not just any "caT," cat with such enthusiasm that I lingered on the T, making sure the tester knew that I knew that she knew I had no hearing problems. Her: "bath" Me: "baT" Her: "Blorp" Me: "Blorp?" Her: "Let's try that one again she says, blorgn Me: "Blorgn!" I got it that time for sure!

Wait a tick, I am pretty sure blorp and blorgn are not words, what a weirdo this tester is...wait, am I not hearing this correctly?

Turns out I had a bit of hearing loss. Nothing crazy, just enough to make locating noise difficult. They put me on steroids, if this is some kind of infection, they assured me the steroids would do the trick. But, just in case let's get me scheduled for that MRI. Don't panic, I thought, how important are the structures of the inner ear? I hear of Yogi's getting their inner ears all messed up all the time from prolonged hand stands. That must me what happened to me. I am a certified Yoga Sculpt teacher. Except, I don't know how to do a handstand! "Shut up, inner logic!" I screamed at myself.

MRI day finally comes and it's actually quite fun. My parents come visit, we go out to lunch and we even go shopping. A small part of me thinks we should do this more often. Well, maybe not all of it, maybe just the lunch and shopping bits.

So there I am, on facetime with my sister, the doctor, and I am PANICKING! "What the heck is that?" I scream. Calmly she says, "those are your eyeballs." How does she know that I don't have two eyeball shaped tumors sticking out of the front of my skull? I am not sure but she sounds confident. I decide to move on. "WHAT IS THAT? That cannot be normal!" She laughs, "that is your spinal cord!" I wonder if it is supposed to look like Darth Vader but again the timber of her tone has not changed so I decide to trust her. I also trust her that human ears are supposed to look awfully elfen in MRIs and that everyone has blood vessels. I even believe her that my brainstem is supposed to look like broccoli. Then I see it, a white mass. Looks like a golf ball, maybe attached to a smaller mishapen golf ball. Uh oh.

"WHAT IS THAT? THAT IS NOT NORMAL! EVEN I AM NOT THAT STUPID TO THINK THAT THIS IS WHAT MY BRAIN SHOULD LOOK LIKE. COME ON WHAT IS IT?!?!?!?!"

"Calm down," my sister says,"but the smile is gone from her lips, I can tell just from her voice.

"WHAT IS IT?! GET IT THE F*** OUT OF MY HEAD!"

"We just want both sides to look the same," her calm is not easing my rising anxiety,"all we know is that there is an irregularity, but there is no reason to be worried. Do I look worried she asked?"

I don't think she looked worried but really all I can see at this point is Darth Vader, invading my brain with his little irregularity, ugh how rude!

I don't want this in my head, in fact I am screaming that. I don't want it in my head. Come on, get it out! My sister assures me that if "Lance Armstrong's balls can handle this, so can your brain."

Dammit. I wish it was in my balls. And, no, I have no balls, I am fully female, so an invisible tumor in my invisible balls would be much preferable. JEEZ!

Long story short, I have a tumor, which I have coined Herbert. I figure even uninvited guests deserve names. Herbert being the ugliest name I could think of. (Sorry if that is your Grandpa's name!) I mean, we have been hanging out for at least a decade. Wait, you are confused too! How did I know that Herbert has been with me so long? Well, remember that lovely MRI from years ago? Yea the migraines. Turns out Herbert was hiding in there all along and was "plainly visible" according to the doctor who looked at it recently. He was just a little tike then, 4 mm. He's grown, he saw a vacant lot on my vestibular and facial nerves and decided to move in. (We're not sure if it is a tumor of the vesitibular and hearing nerve or the facial nerve but it is most likely what is called an acoustic neuroma or vestibular schwannoma - no, that is not the same as chicken scwarma - I asked...) He recently even expanded to the lot adjacent to my brainstem. I hope it appraises well because location is everything in this market.

What I have is not cancer (YAY! sorry cancer, I just don't want you!) and it won't kill me (I mean no more than any other thing I face on a daily basis is likely to) but I have to deal with it. And, I have to deal with the anger that comes with it. I have to face potential loss of hearing (eh? what did you say? heh?) perhaps the potential of facial paralysis. Ugh there go both my Broadway career and my modelling career. Whatever, you are too short to be a model. Not me.

I suppose I am lucky, and some days I feel like I am. I am continuously grateful for my family, my friends and my handsome boyfriend. Then there are the days where my sense of humor fades and I etch the word laugh onto my hand. A reluctant reminder that my strength is from the inside. I think I have dealt with worse loss than this in my life and I strive every day to find my new normal. Some days I am frustrated. I slip in a balance pose in yoga or feel faint lifting weights. I think to myself, I can do this! Some days I feel betrayed by my body. Other days I feel betrayed by my heart for feeling betrayed by my body. Some days I think, what a waste all of this healthy eating has been and I think about donuts. Some days I think I have a sweet excuse to slack on my homework, then I remember who I am. I am not the guy that makes excuses. I am the fierce woman who fights back. I've begun to reframe expectations for my year and my life in new ways. As my sister said, I should mourn the expectations I had that I would wake up with 2 working ears. A reasonable expectation by all accounts and one that I should try to live without. That seems doable.

The great news is that this is treatable, and most likely successfully. So I tell jokes. I try not to get bogged down in the disheartening reality that I cannot control everything. I try not to be mad (but really I am) and I try not to misdirect my anger at any of you (sorry if I fail). My family has seen me in the worst of my moments and they let me scream and yell. Sometimes they respond with the reluctant non-commital, "Well..." Well what? am I right or am I right? Apparently not even Herbert can get people to affirm your views all the time. Other times they get more passionately angry than I, carrying the torch on my behalf. Wishing this hardship on themselves, something I would NEVER allow. And sometimes, they tell me to shut up, that no one will feel sorry for me because I will be ok; and, it is in those moments, right as I am about to call them a bunch of meanies, they squeeze my hand, pat me on the shoulder, or blink their tears away. It is then I feel like I don't even remember my old, uninvited guest, Herbert. Sometimes they even laugh at my hugely inappropriate jokes long enough to let the pity out of their eyes and true joy in.

This is my journey. Well, our journey, Herbert and I. And don't you dare call him Herby, that is way too cute. This is also the journey of a woman who sought to change the world of women who have been victimized in the worst ways by humanity. I still plan on doing that. I still plan on carrying the torch of women around the world who are voiceless as I know all of you, my beloved friends and family are carrying the torch for me, being my cheerleaders. Even when I can't hear your cheers.

Follow my blog for all things Herbert, Samira and life. From the trials of getting a PhD and trying to hold tight to my cause for women and the world, and the small inconvenience of a looming brain surgery. I invite you to walk along side me. Just don't walk on my right side because Herbert won't be able to see past you.

Peace and love --