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 —

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