Wednesday, October 10, 2012

Why "Why?"

5 years ago, when I was 30, my life changed forever. While most of my friends were having kids, my life took a vastly different direction: I had a tumor. A brain one.

Having discovered this surprising news a few months prior, we had to move swiftly. Suddenly "brain surgery" was the most important thing to check off of my "to do" list.

I was super-positive before my brain surgery, and even afterwards -- despite the fact that I'd also just lost half of my hearing abilities -- I maintained a healthy spirit and vowed to keep a super positive outlook on life.

Over the years, however, I slowly began for forget the new "lease on life" I'd promised myself. I began to fall into dark places seemingly out of nowhere. I struggled with these emotions in not knowing how to deal with them.

These times of struggle were when the overwhelming question, "Why?", began to surface a lot: "Why did this happen to me? Why did I deserve this? Seriously… why?!" These "Why's" caught me off-guard with their intensity. I had no idea how to answer the question sufficiently and "everything happens for a reason" was getting really old.

I feel that the most difficult question we can ever ask in life is "Why?".

If the answer is unfortunate, it can be questionably heartbreaking; if left unanswered, it becomes an inexplicable void that doesn't easily go away.

So, how do we deal with the "Why's" in life? This is what I've decided so far:

It's important to accept that the "Why's" are inevitable. Life takes a lot of twists and turns. They will either be pleasantly surprising or unexpectedly unfortunate.

The latter will challenge you, and I think the best you can do is be prepared for that challenge. Your ammo is knowing that the power of family, friends (and sometimes, complete strangers) will be the kryptonite you need to combat the "Why's" that you so desperately want to answer, but can't.

It's SO important that these "Why's" don't defeat us.

My support system was ridiculously empowering and I remain astounded in retrospect. I remember feeling overly humbled and subconsciously thinking, "WHY are they doing all of this for me?!" That's an answer that continues to become more clear the more I think about it.

I feel I recently figured out the answer to my biggest "Why." Maybe everything that happened to me happened so I could use my learnings to somehow help others; that maybe I'm doing whatever I was supposed to do with this Life I was given.

Feeling confident in that answer has uplifted me and healed me. It's since defeated my own controlling "Why?", which I've been seeking an answer to for a long time.

It's important that the "Why's" never control us because there'll be no answer until we can solve these answers on our own. Confront the "Why's" when you're ready; use your core principles to create the answer that finally speaks to you and your unfulfilled question(s) will become clearer.

It won't be easy, but it'll happen in due time… believe me.

And good luck to you. Life has a funny way of working things out if you let them.

Love, Amanda

Tuesday, May 12, 2009

Long-overdue Update

It's been over a year since I've updated this blog on my progress post-Acoustic Neuroma surgery, and an update is, frankly, well overdue.

I know a lot of you who're reading this have most likely been diagnosed with an AN and are pursuing your own research -- just as I did when I discovered my own 3" AN back in August of 2007. I started this blog for you guys, mainly 'cause I was underwhelmed with the facts garnered from my own online discoveries (not to mention completely freaked out by the surplus of negative outcomes that seemed to make their way online, thereby downplaying the many positives that were never shared).

Since I last posted over a year ago, my health has been as good as it's ever been. The main repercussion, for me (having underwent the Translabyrinthine approach), has been acclimating to the complete hearing loss on my right side. All things considered, I accepted it wholeheartedly from the very beginning and don't consider it a total handicap (or, "Mandycap, as I like to personally refer to it). While sometimes it can be a total pain in the you-know-what, I've learned to deal with it. I don't think most people notice, and those that are well-aware (my family and close friends and co-workers) kindly deal with the occasional repetition it requires. I honestly think it's more annoying for them than it is for me -- I consider that somewhat of a plus in a weird way.

Otherwise, I'm completely recovered and good as new. My scar has almost completely faded and I'll continue to get MRI's annually to ensure there's no regrowth in the other ear (which they say is rare -- but, hello, so was the first one!). Can't be too careful from here on out...

My story was published in the June 2008 edition of the Acoustic Neuroma Association's newsletter, Voyages, and the responses continue to be overwhelming. I've felt humbled to have been contacted by many former AN patients -- of all ages and from all over the country) who shared their own experiences and/or simply felt the need to reach out and say hello. I never realized to how broad an audience this undertaking would eventually connect me; not to mention how close one could feel to a total stranger as the result of a unique, shared experience.

I also continue to receive a lot of e-mails from those of you who've randomly discovered this blog and welcome you get in touch if you have any questions in regards to what you can expect throughout your own AN adventure. I'm more than happy to help you out as so many did for me. The anxiety of it all is definitely the worst part; I know what you're going through and am here to help.

To sum up: I want you to know that I turned out just fine, and you will too. Hang in there and keep a positive attitude -- it will be your best antidote.


Sunday, January 6, 2008

If you saw a chick awkwardly weeping on a treadmill at a San Francisco gym today... was probably me. Before I elaborate, though, allow me to digress:

So, here we all are. It's the year 2008. While it may seem relatively easy to simply process this as the year following 2007, isn't it kind of bizarre to step back and think of it as a year that, to our former eighties-selves, was once considered totally space-age? I mean, it's merely 7 years prior to what we'd digested as the depiction of a future society in "Back to the Future II," and already a whole 9 years past Prince's ode to 1999. I guess my point is, wow -- you can never know just what to expect by the time another new year (or two, or five) arrives.

Okay, back to today's treadmill incident: So, recently, an mp3 was sent/dedicated to me from an old friend, which I listened to today while working out at the gym (which by the way, is the first time I've officially pushed myself, physically, since my surgery over two months ago). Without warning -- and despite only being able to hear the song through one earbud due to the surgery's resulting hearing loss on my right side, the song "Amazing" (yes, the one by Seal), immediately drew emotions out of me that I wasn't prepared for. In focusing on the lyrics, I was so overcome by a slew of unexpected emotions (perhaps provoked by adrenaline) that I couldn't contain my normally-stoic composure and right-out lost it in the middle of a crowded, New-Year's-Resolution-ridden gym.

Mind you, normally I'm no softie. However, it was right at that moment that my psyche digested how the arrival of this new year has marked the significant accomplishment of goals I've been aspiring toward since those drama-ridden days of early October. For example:

I spent the holidays, in good health, with my awesome family: my Mom (who was my ultimate rock throughout this ordeal), my Dad, my brother Ryan and dog Maddie -- back in my comforting hometown in Virginia. I spent equally-cherished quality time with the familiar faces of old friends and long-time neighbors whose hugs, concern and heartfelt encouragement left me speechless. Unexpectedly, I was flown to gorgeous Park City, Utah for New Year's Eve through the generosity of a married couple who I'd never previously realized were destined to become close friends of mine this year (friends who, by the way, were the ones responsible for both the anonymous stitched ninja black belt -- which I wore the entire Christmas Day over my brother's old karate uniform -- as well as a PERSONALIZED HAND-WRITTEN NOTE FROM HUEY LEWIS HIMSELF. Those of you who know me realize how huge this is, Huey being a longtime idol of mine whom I both worship and share a surname, which to my complete joy he referenced! And yes, I realize how dorky this sounds right now, but it was an overdue mention).

And finally, this week, the first of '08, I finally returned to my job here in San Francisco, which is what I consider the final benchmark of an exhaustive journey. While completely elated in greeting my (note: super-supportive and caring) coworkers after such a long hiatus, I was totally awestruck in finally settling in the same chair that not too long ago sat a former version of myself -- someone who was so scared of the unknown, of what was going to happen to her after she left it, and of course, what she would be like when/if she eventually sat in that chair again. And you know what? It felt really great to sit there, now knowing that in the end, I had nothing to worry about.

All right, so fast forward again to the gym today: the song began to play, and in the midst of it this grand summation of the past 3 months hit me all at once. And like those few "A-ha" moments in life that you can't truly explain with the dignity that they deserve, what I can tell you is that this whole experience came to a head today. And perhaps it was supported with the realization that, whoa -- here I am, back on my feet, pushing my body for the first time in months, without fear, as if nothing had ever happened. It may sound lame, but nevertheless it was one of those rare instances where the magnitude of something important hits you and at that moment you know it's one of those once-in-a-lifetime emotions that will be short-lived and all the same, life-changing.

That said, I think that if I could pass on any message to you all for the New Year, it'd be to take a reassuring inventory of the positive, great things we have in our lives. Granted, we all experience struggles: work can be tough, bills can be depressing, and the acceptance of being a real-life "adult" can be overwhelming. But believe me, your worst burdens are troubles that some people can only dream about. I feel luckier than I ever have and it's because I've glimpsed it from a darker, less-stable place. And even if you wind up at a similar place at some point -- and most of us will -- just know that things will get better. In the meantime, focus on the good life you've been given; relax in knowing you will always have an unbreakable human safety net beneath you should you ever need it.

I'm gonna go ahead and post "Amazing" below, and actually, now that it's been the subject matter of this insanely-lengthy post (sorry), I'm fully aware that it most likely won't resonate in the same way for you all as it did for me. I wanted to share it anyway, as it just happened to trigger something within me that I wanted to share it with you. At the very least, it's a good song to play during a workout.

I'm also gonna pull a switcheroo and dedicate this song to you guys instead -- while I may be considered "amazing" simply because I was able to withstand an unexpected, difficult life experience, it was you who gave me the strength to do it.

Have an amazing 2008... I, for one, plan on it.

Amazing | Lyrics

Thursday, December 6, 2007

Dear Mysterious Benefactor,

Words escape me.

I beg you to reveal thine identity.

Sensei Lewis

Thursday, November 22, 2007


For the most part, we've all been raised with a mild understanding of Thanksgiving involving those key symbols of: a) gluttonous dining, b) musket-toting pilgrims, c) football games, and of course, d) the ever-so-thankful 4-day weekend that (even more thankfully for some of us) precedes the busiest shopping day of the year.

Whether these attributes represent the Pilgrims' original intent is debatable; regardless, this year I discovered the true meaning of the season, which actually comes across so trite I almost hate to share it. But the truth is, All You Out There, is that we really have so much to be thankful for. We really do! In fact, this so-called "Thanksgiving" truly deserves its own 4-day weekend after all.

It took my own recent personal trauma (in having survived something as surreal one's own brain surgery) to fully realize this fact. Most importantly, it's because of this experience that I want to imprint this message on all of you:

The lives we are fortunate enough to experience are gifts that, often times, we can't fully realize until they become flashes of uncertainty. Not to mention, of course, that it would be completely useless if devoid of the people who make it worth the experience.

Yeah, I know, it's sappy and nothing we haven't heard before. Though I have to say that once you go through something as crazy as what I've experienced these past couple months, it's all you can do to not impose your learned wisdom on those you care about. My wish for all of you is to simply take a moment to breathe in the magic of the good life you have: it's realizing the beauty of yourself, of your families, and of your friends -- and without waiting for the risk of losing any of them. It's knowing that despite the unexpected cards we'll all inevitably be dealt, both good and not-so-good, that we'll be cushioned by a human support system that's stronger than we could ever comprehend.

And most importantly, it's because of this system that we will get through our struggles in the end.

This knowledge is my gift to you. Use it wisely and don't regret a day of the lives you've been given to live -- especially because of the people who are in it.

Happy Thanksgiving!

Monday, November 19, 2007

Blog B'lag

I suppose I didn't fully comprehend how many of you were actually reading this thing until the postings skewed to a halt -- and then came all of the e-mails asking what was up. So, wow -- I definitely didn't mean to let you down or keep you out of the loop (not to mention that posting updates on here one time -- versus repeatedly via e-mail and phone calls -- becomes less of a time commitment for me). So, please accept my apologies for the lag.

Not surprisingly to a lot of you, I'm sure, I have a lot to say on the topic, so I'll try to get things out more periodically moving forward. Regarding my progress (thanks for asking), I'm doing relatively well. I think it's safe to say that I've plateaued, in that a period of progress (while good) has stalled for the time being. And while I've got a ways to go before I'm 100% Amanda once again (or 75% for that matter), I'm amazed at how well the recovery process has been. I think a lot of my amazement stems from the realization that, whoa, it was merely a month ago that I was confined to a hospital bed with a spinal fluid drain stuck in my back, unsure of my future, unsure of my sanity.

Continually, I'm strengthened by all of your contact and perserverence (particularly when it takes me longer to get back to you all than I'd like). I know I keep saying it... but thanks.

In general, I just can't wait to be back to my old self again, when my energy level's back to that of a regular, healthy 31 year old. Back to when I can stop taking all the Advil. Back to when I can roll my eyes at the color printer not working again (yes, I miss being at work). And particularly, back to when when my head's less addled and it's completely obvious that a stamp belongs on the upper right hand side of a letter (versus the left, where about 20 of them were confidently affixed on a recent thank-you card binge).

The finish line is a ways out, but thankfully, in sight. Can't wait to celebrate with you guys when I get there.

Tuesday, October 30, 2007

When Your Body is Talking to You... Listen.

The question I'm asked most frequently is, "How did you know you had a brain tumor?" The answer is, I didn't. I found out less than a day after my (amazing, wonderful and authentically-caring) ear doctor had scheduled an MRI appointment for me, and seriously, I was completely floored. Stunned. In shock.

In fact, after having put off a hearing test for over two years (yes, that long), I would feebly attempt to scare myself into going, thinking to myself, You know, Self, you really should make that appointment, 'cause what if you have, like, a tumor or something?, after which I would mentally reply back, "It's NOT a tum-ah!" Well, as you know, I finally went for a visit, and shockingly, discovered it was a tum-ah after all.

The original purpose of this blog was to use my experience to provide other AN patients a more candid destination in locating information about acoustic neuromas versus what I found during my own research -- harrowing websites whose surgical horror stories only succeeded in scaring the sh*t out of me as opposed to demonstrating it as an understandably-challenging diagnosis that can eventually be overcome. So for those of you who are here thinking you may have a tum-ah, rest assured. You, like Arnold, probably don't have one. However, here are a list of my symptoms, pre-diagnosis, that I eventually discovered were core ingredients that distinguish the elusive acoustic neuroma:

One-sided hearing loss. I first noticed the hearing ability on my right side wasn't as good as my left side about two years ago. I compared both sides by listening to one iPod earphone at a time -- the volume was noticably different between the two. Like a moron, I attributed the loss to old age (yes, at the dehabilitating age of 28) and ignored it for a couple years. Though this past year, my hearing declined rather dramatically over a few months, and this time wasn't only a matter of reduced volume, but sound distortion. My hearing test confirmed both these points. As the tumor grows in the nerve which is responsible for both hearing and balance (a loss of balance being another AN indicator, which didn't affect me, though it could have been disguised by my natural clumsiness), this in itself was a red flag.

Tinnitus. Tinnitus (prounounced tin-ihh-tis; not tin-i-tis, as it is commonly mispronounced) is defined as "the perception of sound in the human ear in the absence of corresponding external sound(s)", or as I like to call it, that annoying, incessant ringing in my ear make it stop someone please. My tinnitus (which unfortunately wasn't cured with the surgery) is competitive and likes to increase its volume, indicating its overbearing presence, whenever I find myself stressed or, more obnoxiously, whence in a loud environment. It's extremely annoying, but like any other incessant nuisance, has come to exist relatively unnoticed until I purposefully think about it.

Facial numbness. As a result of the (unbeknownst to me at the time) tum-ah having stretched and pressed upon my facial nerve, the right side of my face had developed a slight numbing sensation -- much like the feeling of novacaine before it's almost worn off. It affected the lower portion of my jaw and tongue, and like the tinnitis, was more apparent during times of stress. Fortunately it disappeared with the surgical removal of the tum-ah.

Okay, so I know you're all, Uhhh, Amanda. You're saying you had all these symptoms -- and didn’t get them checked out? Are you stupid or somethin'?" I know. I agree. Looking back, I find it kind of ridiculous that I ignored them for so long. But I was busy. I had people to see, places to go, a job to do. Honestly, a tum-uh is the last thing I -- or anyone -- should expect to have. I mean, up until my diagnosis, I had lived a healthy existence relatively devoid of doctors and of being sick. Little did I know I'd had a slow-growing, benign tumor developing within me over the past decade -- a truth that still remains unfathomable to me.

Yet I've learned from my experience and I hope you can too. My advice is, short of becoming a hypochondriac, is to listen to what your body is telling you. If something seems alarming to you, get it checked out. And get those proper annual checkups which will tell you if something's wrong when your body isn't able to tell you otherwise. The good news is our bodies are strong enough to recover from almost any malady, and I consider myself proof of that, having emerged from this whole crazy experience as a stronger, more educated, and now, tum-ah-less ninja force.