I am always fascinated about how much great information there is online. I'm also a bit miffed at how much that information can hold back patients.
Samira Rajabi was diagnosed with a vestibular schwannoma, also known as an acoustic neuroma in 2012. She has had ten surgeries to deal with her tumor and its various side effects. She writes a blog about her life, surgeries, recovery and experiences at LivingWithHerbert.com. She is currently a post-doctoral fellow at the Center for Advanced Research in Global Communication at the University of Pennsylvania, where she studies media studies. In her spare time she plays with her two pups and spends time with her husband exploring Philadelphia.
When you have a chronic illness, there is the period of time at the outset where you research everything, spending copious amounts of time on the web, browsing articles, blogs, personal stories, YouTube videos of surgical procedures and animated diagrams. At least that's how it was for me.
The unofficial night of my diagnosis with an acoustic neuroma, I didn't sleep, instead spending hours watching videos about other people who had what I thought I had. Then I did actually have it and I spent even more time unraveling the meanings. It was an informative but often problematic journey into the deepest corners of an online world that is often telling and powerful, and other times confusing, nonsensical or just plain wrong.
As an aspiring academic I thought perhaps I would have better luck if I spent my time not perusing the thoughtful anecdotes of others who had survived similar diseases as mine, but rather to study the cold, lifeless facts of peer-reviewed journal articles. It used to make me feel overwhelmed, and then empowered, and then sometimes ridiculous when I stood in the face of actual doctors and realized I had gotten the medical jargon all wrong. That was three years ago, when I first found out about my brain tumor.
Knowledge is power, right? So, I figured if I were to understand the circumstances I found myself in, I had to be pretty darn powerful. Strangely enough, at that same time I would get frustrated with others who tried to arm themselves with that same power. My family and friends would Google the tumor until they were exhausted, barely able to move their mouse-clicking finger anymore. I would resent them for thinking they had knowledge when all they did was search for something. I obviously had knowledge because I searched for something that was growing inside me. That had to be different. It felt different, even if that feeling was wholly irrational.
Three years later, amidst complications, fairly severe spinal fluid leaks (out of my nose as a complication from a tumor ressection) and what is looking like my sixth craniotomy, I wasn't sure how much "power" I really wanted. Words were being thrown at me, quickly and without a particular amount of care. Doctors insisted that it wouldn't be that bad
to have another less invasive craniotomy. "Yea," I would mutter, and then I would think, "lucky you, you don't have to do it, so it really isn't that bad for you!" I spent weeks in anger that this journey
that people keep considering a temporary blip in my life's radar wasn't over. It wasn't that I necessarily wanted it to be over or needed it to be over, it's not a blip, it's a part of my identity now; I just wanted people to stop asking me if it was over. For that to happen I had to stop having invasive surgeries that take me from daily routines and cause my social media posts to take a turn from puppies and mountains to I.V.s and hospital food. So, I avoided it, playing with my puppies and going for walks, pretending that each twinge of pain in my head wasn't a symptom, it was a coincidence.
There were a lot of coincidences.
Until last night, my spinal fluid leaked silently out of my nose as I wrangled my two dogs and got ready for bed. Sleep alluded me as I reached for the extra-soft, organic baby wet wipes I now kept next to my bed and used to wipe spinal fluid off of my face. I reached for my phone, awkwardly leaning over it and hoping craning my neck wouldn't trigger a post-operative headache. A small dot of spinal fluid dripped onto the phone. I closed the game I was looking at and clicked on Safari. My appointment is nearing and I thought, OK, a little knowledge can't hurt. After all, doctors will throw terms around and it's up to you to know them, or at the very least to know what to ask about them.
Within minutes I had found peer-reviewed summaries of articles written by doctors. Within the hour I had read several of them. I learned about the two options I have, the two surgeries. One to cut through the skull, to explore, to fill in. Another to essentially take a straw and drain the ventricles in my head down to my spinal cord and out my lower back. I know where they would cut, I know how long, how deep. I know these are my options. I have knowledge, I have power. I am armed and ready to take on neurosurgical appointments, I know what to expect, so perhaps I will know how to prepare.
But now, I also have fear. I am armed with the fear of knowing that these two, highly undesireable options, are my only ways through this. There is no way out of this. There's no backtracking and there is no erasing of the knowledge. There is door number 1, and door number 2 and then there is me, with a keyboard, a smart phone and my quicktyping, frantically looking for door number 3.