Every Day

I stopped in the acoustic neuroma patient forum the other day and was catching up on old friends, saying hi to some newly diagnosed people, when I read a post that kind of got me to thinking. The post was from a guy I respect very much who had a massive tumor removed a few years before I entered the brain tumor scene. He is always able to articulate so well what sorts of things "newbies" could expect, and always does it in a way that isn't frightening. Well, okay, I know that there really isn't anything about a brain tumor that ISN'T frightening - but you know what I mean!

The comment he made was "It is not something you 'get through', recover and move on as if it never happened. Even with the best outcomes, as I experienced, a few 'reminders' are still part of my life." It got me to thinking...

Most of us in this little club have moderate to total hearing loss on the tumor side. Not something other people can see, but something we all have to make accommodations for every single day. In my case, I get up in the morning and snap a little metal box onto a metal rod that is implanted in my skull. Great to be me.

The unlucky few who have permanent nerve damage may start their day, as I do, with a blob of lubricating gel in the eye to keep it from drying out. And, those are the same people who have a blast of panic when they realize that they've left the house without eye drops/gel.

Mind you, I am not complaining. There are SO many people dealing with much worse things every day. But, I do sometimes long for my "old" life, the one that didn't involve bionic ears or eye gel. Just sayin'...

It's All a Matter of Balance...

I remember before I had surgery, the surgeon told me that I would be likely to experience "disequalibrium"... And, I thought to myself, "disequal-WHAT?" Basically that is just a fancy way to say "sorry, kid, your balance is going to suck."

Most of the time, I actually do quite well. I've adapted to having only 50% of a normal person's ability to balance. For example, I don't try to walk around in the yard in the dark, I always use the railing when I'm on stairs, and I have night lights strung out all over the house. Works pretty well. I know that when I am tired, I have to be more careful, and that when there is a lot of sensory input happening, my balance will get much worse. So, where am I going with this?

This past weekend, the hubs and I went to the Bronx Zoo. We both needed a diversion and it was kind of like a mini-vacation. Now, if you've never been there, it is a huge place with lots of indoor and outdoor exhibits. Well, we got out little map and headed out on our grand adventure. One of the first things on our map was an exhibit called "Madagascar" - whoa, cool! In we went.

Now, let me set the stage. The floor was made out of some sort of rubberized material which gave it a slightly squishy consistency. It was dark (simulating night time, I guess). It was REALLY crowded. And, it was REALLY noisy. You with me so far? Uneven surface, dark, and mega-sensory input. All of a sudden, my world felt like an amusement park ride. I grabbed Willie's arm in a death grip, while trying to dig my fingernails into the fake rock wall on my other side. I experienced a fear-induced blast of adrenalin, and a strong desire to claw my way to safety. Happily, we made it out upright and intact. Well, other than the hubs' dislocated shoulder from where I tried to wrench his arm out of its socket.

I am happy to report that the rest of our day was spent upright and oriented - and did not include anymore dark exhibits. Sorry, no bat house. And, no Mouse House, either. Nope. Strictly large mammals for me. Large outdoor mammals.

Single Sided Deafness - Glass half-emtpy or half-full?

I was getting up on the Acoustic Neuroma patient forum today and came across a link for a very well-written essay on single sided deafness. I think this is a good read for anyone who is SSD, as well as those who have the pleasure of living with those of us who are SSD. Enjoy...

http://tribalvillages.org/deaf-essays/single-sided-deafness.html

BAHA - Ha Ha

First, let me say that I am very, very happy with my new digital ear! It is interesting that when I am wearing it, I don't even notice that I have it on. By that, I mean that I don't consciously "hear" anything differently. But, there are times when I am struck with the sudden realization that I am hearing something that I never would hear without the BAHA. Case in point - I recently had a group of my girlfriends over and we were all sitting around the dinner table talking. And, let me just say, they can talk a LOT. Well, everyone was talking at the same time, which is usually death for me since all I hear are random words. As I was sitting there, I suddenly realized that I could hear the friend on my deaf side PERFECTLY! That was one of my big (B)AHA moments.

And, of course, as with all things brain-tumor related, there are also funny moments... I was recently putting some things in the back of my little SUV and as I was leaning in to set something in the back, my head made contact with the door of the car and - WHAM - off my BAHA flew! It hit the pavement and rolled under my car which triggered some extremely colorful and inventive language from me. Down on my hands and knees, I retrieved the little guy and, with heart in throat, attached it to my head. Success!! It was none the worse for hitting the ground at maximum speed. Now, that said, I don't suggest that anyone start hurling their BAHA around with reckless abandon.

I am currently helping to rehab my in-law's 40-something year old house, which is providing all kinds of interesting balance challenges. The miracle is that I haven't fallen into a paint tray yet. But, there is still time...

Happy AN-niversary!

We are currently in the middle of renovating my in-laws house, after relocating them to Huntsville, AL two weeks ago. So, I woke up this morning aching in just about every part of my body, thinking - "wow, I feel like crap." And, then it occurred to me that exactly three years ago today I was about two hours in to a roughly 6 hour brain surgery. Hm, that makes today's aches and pains feel a little less achy and painy. The TRUE definition of "feeling like crap" is when you wake up in a noisy recovery room in a major NYC hospital, with a tight (really tight) pressure dressing around your head, pink "oops" tray nestled under your chin, another dressing on your belly, head swelled up to the size of the Goodyear Blimp, and tubes and wires hanging out of every part of your body. Yep, that will always and forever define "crap" for me!

Yep, that puts a good perspective things. Three years later, I am adept at avoiding balance-challenging situations, a master at the head-swivel to hear what people on my deaf side are saying, and relatively good at keeping food in my mouth where it belongs. I will celebrate the day by arming myself with paint and spackle and doing battle with "the house." Then, later today, I plan to open up a bottle of something nice (and, no, I'm not talking Coke, folks) and celebrating my AN-niversary! Care to join me?

Three Years...

It is hard to believe that it has been three years since I heard those fateful words "You've got a brain tumor." I was diagnosed March 4, 2008. Three years ago, I was in a frenzy of researching and discovery. Things like craniatomies, neuro-muscular facial retraining, and bahas were completely foreign to me.

Now I am sitting here with a little digital box snapped on the side of my head, lots of titantium in my skull, a sometimes goofy smile and a few interesting scars. Holy crap. These are the things that come along in life that are completely unexpected and certainly game-changing.

As for me, I've had some ups and downs in the last 3 years, but I'd have to say that the ups outweigh the downs by quite a lot. When things like this come along in life, you really only have a few choices: you can adjust and find things to love (or at least like) about your new life, or you can sink into a vat of endless depression. Well, when I put it like that, not really much of a choice, is there? Those vats of depression are actually pretty boring. So now I just chuckle when I suddenly stumble or when I think the host of American Idol said "stink bombs" when he actually said "stage moms." And, when I get frustrated that I can't do everything I could do PBT (Pre Brain Tumor), I remind myself of all the wonderful people I've met along this journey, about the lasting friendships I've made, and about all the little things in life that have changed in good ways.

And, hell, if all else fails, I can always have a nice glass of something red - and I'm not talking fruit punch!

(B)AHA Moments

So, not quite a week into the BAHA experience and so far, I'm loving it. Yes, I'm the woman with a finger in one ear, snapping her fingers next to the other ear. It's just SO cool to be able to hear those sounds!

Today, I'll really get to put it to the test. I have to take our conspiracy theorist cat, Rocket, to the vet. Now, just as a bit of background, this is a 12 pound cat who requres two burly technicians to hold him down for a simple exam. And, did I mention the screaming? Him, not me, by the way, although maybe I ought to consider screaming myself. Anyway, I anticipate reaching up and turning the BAHA off at some point during what promises to be a very "lively" experience.

And here are few other pictures, just for fun.