Monday, March 28, 2011

???

I question everything. I break everything down to it's simplest form, in hopes of securing an answer. Somehow, I always come up empty.  I thought I found what I wanted to do with my life, and then I began questioning that. Do I really want to go into medicine? I studied theatre, and with every fiber of my being wanted to be a director. I gave that up. I gave up. That's not me. Taniya doesn't give up. Taniya's dreams have changed for 30 years. Every second, of every day I feel like I should be doing something else.


I've never been enough, and I feel like I'll always search for "enough." I've waited for something to "call" me. I knew when I heard that call I'd know exactly what I should do, and where I should go. - I would just know, right? 


 Then I watched my mom die. I made every decision, as I watched every labored breath she attempted to take. Every piece of information that I could find, I pulled. I spent countless hours on the Internet, and reading books. I spoke with every doctor I knew.  - that was a challenge. I called, and called, and called again. I left countless messages until I received calls back. I violated HIPAA laws.- I snuck peeks at her chart. I memorized the information, so I could go over it with every doctor who did call me back.  I saw her before, during and after. And then I held her hand when she died. - That's when I heard my "call." If I could: get that invested in my mom's medical treatment, look and every wound, and read every gory detail, of someone much more than a patient ... I could be treating patients. 


So what? OK I can handle blood, and death. I still felt that I was making a rash decision. Maybe I just wanted to "fix people" because I couldn't "fix" my mom. Maybe I simply, wanted to save families from feeling the hurt I felt so deeply. After all: I only wanted to act so I didn't have to be the girl in wheelchair. Then I learned that I couldn't act (how I wanted) because I was the girl in the wheelchair.  So then I didn't want medicine, either. 


Recently, it all became so clear. That "call" became a scream. OF COURSE YOU NEED TO BE IN MEDICINE! - NO you don't want death! You want life. More importantly, you want your life. That "scream" came in the form of someone two feet and more than 20 years younger than I. I've heard that before: "embrace OI, and see yourself in the children that need to be seen. To simply say: "I've been there," negates the magnitude of what I have to do. 


This world was not made for me. I learned a long time ago, it won't adapt for me. I have to adapt to meet the challenges, life presents. It's easy for any doctor, to say: "I've treated this before." "I've seen this." I've grown up my whole life with those doctors. Where's the professional who can say : "I've had this done." "Yes, it will hurt like hell." "No, it's not going to fix everything, but I KNOW it's worth it!" I always wanted a Doctor who understood. It's not all all about medical terms and scalpels. Where's the empathy, and compassion....


A four year old showed me , that's where I come in! 

Sunday, March 20, 2011

To cut or not to cut ... that is the question

I'm contemplating having the "seizure surgery." It's hard to think of having an ELECTIVE surgery on your Brain, but sometimes it's hard not to...


There's always that lingering fear that a seizure will happen, and where I might be when it does. If one happens, and the DMV gets word of it, I lose my license for 12 months. - One whole year of trying to rely on some of the most unreliable people. That, in itself, is terrifying. 


I've had my seizures under control, for several months, and that's security. Yet, my doctor looked at me and said: "I was thinking for you, long term, and there's a surgeon I meant send you to." Now that didn't give me the warm fuzzies, but maybe it's something to consider. A life on 2,500 milligrams of anticonvulsants, a day, may not be the best option. 


There's no guarantee that this surgery will even work. Essentially, it is just cutting out the section of the Brain, where the seizure originates. There is a chance that the surgery will do nothing, or even make things worse. I ask myself if it's a risk worth taking. 


Part of me wants to do it, because I have the choice! Back in '03 when I had that Hemorrhage, I had no say. All of those decisions were made for me. I was, blissfully, unaware. I remember waking up, after being in a coma for five days, and not understanding what happened. I could not wrap my head around the magnitude of what I endured. I didn't feel the swelling, in the whole right side of my face. I didn't know that I slept through five days of my life. It all came together, my first day home: I had walked into the bathroom, and caught a glimpse of myself in the mirror - the whole right side of my head was shaved. Both of my eyes were black and blue. The swelling had not completely subsided. I was not prepared to see any of that. I felt ugly, I felt like so much had been taken from me, and appearance reflected that.  I almost didn't care, that I could still speak and see. All my cognition was still intact, but I pissed that I had part of that decision. 


This time, I'd be saying "Go ahead and shave my head!" "It's OK that you may leave me without the ability, to speak, move, think ..." "I don't mind that I'll have a hell of a fight ahead of me." "I believe in you enough to allow you in my head." More importantly, it would say: "see I can do it all over again!"


So I guess it's not JUST seizure control I'm seeking!  - Yes, I'm a control freak!

Friday, March 18, 2011

Accomplished

I was speaking with a person familiar with OI. In fact it is a person that knows someone with OI. In my 30 years of life I've learned alot of things. There are so many fears, that go along with having this disease. So much is still unknown, and undiscovered. When I was first diagnosed, nothing was known. There was no genetic testing. I said this morning I have no actual "proof" that I have OI: but I do, and Doctor's didn't need a test to conclude I, in fact, have OI. 


When I  speak with the newly diagnosed, or parents of diagnosed children, I hear the. I recognize the uncertainty. There's this bleak picture that bursts into the forefront of our minds, when we hear 91 broken bones, or ten Orthopeadic surgeries. I know that all sounds scary, but I feel it is a blessing. 


Sure every broken bone hurt, Some surgeries were so unbearable, that I didn't think I'd get through it. My last surgery, was corrective, and took two years to be completed. This was an elective surgery, and I found myself often saying: "if it aint broke, why'd the hell did you try to fix it!" But the outcome of that surgery was amazing. I can stand straighter, than I've ever stood before. That, alone, has relieved so much pain.  


There's accomplishment. - Always an accomplishment to be had. 


Think of every time, you score an awesome job, move into a new apartment, learn to do something, you've always wanted to learn, have a child, get married, buy a puppy - All those are accomplishments: big or small, you get to be proud of. I get to have that feeling, all the time. 


Every time a cast come off and I've "rehabed" the injury I get to be proud. Surgeries I've come through, make me feel so accomplished and full of pride. Missing weeks of college, and graduating on time, felt amazing. 


I have the everyday accomplishments, as well. But, it's the ones that I'm used to, that feel extra special. 


It's not all roses. It WAS real hard. So for the "newbies" move from the fear, and move towards the "WAS." Bones strengthen, and so does spirit. Embrace the little things, as major accomplishments because by rite, they are. That's how you avoid feeling bad for yourself, or your spouse, or child. 


Of course I've had moments of feeling bad. You can't help, but feel bad when: a potential employer gives you that quizical look when you walk in for an interview. (you can be pretty sure they've already counted you out) or when the love of your life looks at you, and says "I love you, but I'm too superficial for you." or when someone is yelling when speaking to you. (Dude I'm 4' tall, not deaf!) And then there's my all time favorite: being given a CHILDREN"S menu! I'm learning to feel bad for those offenders, instead!

Thursday, March 17, 2011

Independent, alone or lonely

I have always prided myself in being independent. I struggled with the desire to do things myself and people's desire to "help" I'm still not sure that "independent" is an accurate term. What does that mean? I can do things on my own, by myself and alone. The underlying connotation is alone.

The hard part is that you must learn the difference. There is always a desire to be independent, but you cannot merge that into alone.

I watched 127 hours last night, and saw what happens when the two become one. Now, I'm not implying that we will all end up cutting off our arm in a Canyon, but the possibilities are endless when you find yourself alone.

I've let my own independence leave me alone. I've had blow out fights with my mom, over things I knew I could do. She never challenged, but there were times that I felt she was. My philosophy was always: just do it. I am the person who jumps in head first, believing it will all work out. I remember: not taking my mom's phone calls because I didn't want to "check in" at 20 years old. I told her repeatedly, LEAVE ME ALONE!" "I'll be fine without you!" Sadly, I am without her. I am ALONE. I don't feel any more independent without her. So why did I spend all those years requesting to be "alone"- because "alone" felt more like "on my own."

That's the place that lonely is born. When you can't reconcile, the two with grace: you find yourself lonely. You've pushed away the many people in pursuit of independence. Whether, it personal, independence, physical independence or romantic independence, if not pursued correctly, all, can lead you to lonely!

Sunday, March 13, 2011

Pursuit of the Poofy dress ...

Every one of us is given those special rites of passage: the things we wait patiently for, and are so excited when they arrive. Whether it's the upward movement of Cub Scouts to Boy Scouts, of the difference between a Junior and Senior Varsity Cheerleader. Meaningless changes that at the time seem to be everything.  We've all had them and saw them as some huge moment in time to redefine (or define) ourselves.


I went out for drinks ,with a girlfriend the other night. On both sides of the bar you could see people at different stages of their lives.  To my left there were the young, fun and rambunctious group: a gaggle of young 20-somethings (and a kid who looked as if, earlier that morning, he poured out a box of Fruity Pebbles to uncover the prize!) It was a perfectly depicted picture, of " date night" here on long Island! LOL   Then to the right sat a rather refined group of women (and one guy hitting on them all.) They were in their mid-forties, and appeared to be enjoying a glass of White Wine. 


So there I was, in the middle, with my Margarita - Not quite the beer-churgers of the group to my left, nor really ready to concede that happy hour meant a glass of White Wine. (Not just yet!)  I was talking about where I fit in, with my friend. We both discovered that: we were supposed to be married by now! Duh that's a no-brainer! I always said I'd be married  by 23 and have kids by 25, but to hear that someone else had the same plan- Woo Hoo! I was not out of my mind! So that got me thinking: WE ARE ALWAYS CHASING A POOFY DRESS! 


As a little girl, I watched my sister take dance lessons (she only took them for .2 seconds, but stay with me people!- It had impact!) I wanted a Tutu! OK five year old in a wheelchair - wasn't going to be dancing Swan Lake anytime soon! So I got a Wand! ( Luckily Ashly outgrew the Tutu fast!) My jealously lasted as long as her dance career! (And between you and me she feel asleep, on stage during her first recital!- so that career was over long before it started!)  So I lost out on Poofy dress #1 


Poofy dress was a bigger problem. That good ole Sweet Sixteen! I was excited for this one! This one I knew was mine. After all nothing could change my age! Invitations went out, favors were purchased, DJ selected, dress shopping here I come! But once again the Poofy dress eluded me! The month before my party, may parents could not afford the final payment. It was not in our budget. No matter how hard mom crunched the numbers, we really couldn't afford it. I had to call every person on my guest list to say my party was canceled.  In the town I grew up in, you didn't dare say that you couldn't afford something. I had an elaborate lie about a double booked venue, and my date had to be changed. I'm not sure anyone believed that, but hey - it's all I had at 16!


Junior prom was up next. This time I had the poofy dress. Being a "Little Person" you can't walk into JC Penny and buy formal gown off the rack.  My mom made my dress. It was a beautiful lilac dress with a shimmery Chiffon overlay, and rhinestone straps. I even found kids shoes that I dyed to match. For reasons that I'm still not clear on: I got stood up. Dress ready, hair done, and no date. He bailed last minute! So I spent prom night looking great (as great as a nerdy girl, stood up for her Junior prom could look!) watching "Mission Impossible." (If only Tom Cruise could have seen me!)  I didn't even attempt Senior Prom! 


I have a closet full of fitted, "sexy" dresses! Many of those I've only worn once, and normally to wedding. I've come to terms with the fact that "poofy dresses" are not for me! After all, being 4' tall, I look like a CUPCAKE when I have on poofy dress! :) 


Now the last Poofy dress I am not willing to give up on! There is no way I'll be trading in my final shot a  poofy dress for a box of Kitty Litter. (I don't like cats so if I become the "crazy- cat -lady please shoot me!)


I say this all light-heartedly to say it is JUST A POOFY DRESS!! It's not a rite of passage as we all think they are. We feel obligated to have them and give them. Yet, we are no more or less fulfilled because we went to Prom or had a rockin' Sweet 16. Pursue the important stuff. Life's biggest accomplishments wont include a dress you'll never look at, or put on again! And probably wont look as good as you thought it did, when you look at the pictures!  

Thursday, March 10, 2011

Always sing your "SWAN" song!!

In theatre we all hope to not be type cast. To get stuck in one kind of role over and over is death to a CREATIVE career. I was always typed as the "troll" or some other weird forest creature.  That was part of my dissatisfaction with my acting career. I knew someone who was always cast as the mom and housewife. I've seen the "fool" and the "leading man" walk right past. I have sat on the other of the directors table. I've heard "He's too short," She's too big, " "He looks too gay," "She'd be perfect if she'd dye her hair." He wont be believable s such and such a character." I never understood that one. The actor becomes the character- not the other way around. After we got all that "typing" out of the way we moved on to substance. "his voice was amazing, and that song suits him." She delivered that monologue with such passion" or "They have great chemistry." I know which had the larger impact on casting. I've seen it ... I've done it.  I've seen people be who could not act at all, cast because they were tall enough, pretty enough, and sometime just because they were easy to work with

Disclaimer: To my Five  Towns peeps I am not implying that any of these statements were specifically made about ANY of you. There were shows before, and after you.

Here's where it gets tricky: Actors get used to this. We learn to know our "type" and embrace playing those roles. Even when deep down we want to be the ingenue. OK so we don't always embrace it. (insert sarcastic tone here.) but we desperately want to be on stage. Sometimes we humiliate ourselves, in fear that we wont get cast, again, if we turn down roles or refuse to take direction we find degrading.  We find comfort in our fellow cast members who share similar feelings. And than there are those who live by "at least I'm not in the chorus!) Or as Jack called it 3rd tree from the left.

But then there are PEOPLE- Every day people, who have never stepped foot on a stage. They get typed, more often than not. Every one knows the "dumb girl," "the fat kid" "the slacker," "the snot," "the bully," the jock," "the kid we feel certain is gay (and sometimes is or is not!" "the shy kid," "the geek," "the theatre nerd" (that was me)

Who are you? Don't be any of the above. Unlike theatre, where a director determines what role you play, you have the opportunity to play all those and more. So what you're the "theatre geek?" Does that mean you can't be popular? Because you're "shy" does it mean that you're not smart? Because you're African American, does that mean you're "poor?" How about the "gay kid?" Does that mean you can't open, and still be successful? NO!

Play whatever role you want to play. Don't force the worlds type casting upon yourself. I'm guilty: I've been the "little person" meant to be alone, unsuccessful and uneducated. I accepted that type for a long time. It took years before I decided that role wasn't for me! I turned it down. I know what roles are for me, and which are not. Unlike my performing days: I can look the world in the face and say "SHOVE IT!" I won't be her, I won't even look at the script and consider it.  This is my life, and I wont type cast myself.

So no matter who, or where you are reject "types," and cast yourself as who you want to be. And no matter what find a time, a moment, and a place to sing your SWAN SONG!

Monday, March 7, 2011

Ya know ...

This blog started out as peek inside the life of someone the world deemed "different." I intended for it to be for the kids that I lecture to. I wanted a way for them to connect with me as a person, and it has. On many levels it has touched people, and the feed back I get from students is so rewarding. Yet somehow, this went from being about me, to being for me. 


I don't want to be pacified, or pitied.  I have this voyeuristic need to move people in a public forum. I put my life on display, for the sake of finding someone who's "been there." In a world that, at times, I feel so alone  it's nice to know that I am in good company. 


I separate my world from yours, mainly because I feel so different. I know that you can't see my life, until you see it through my eyes. Events that happen to you, have very different shades when they are are laid out for me. 


I'm hard, and strong. I'm confident in myself. Yet, at times I am vulnerable, and extremely insecure. I never break, but I crack. I don't rip, but I tear.  I often find myself jealous, and proud of the people I love. I live for myself, but would die for some. I am taking such great strides, but find myself, slowly falling backwards. 


My mom's voice of reason would echo in the back of my head. But she's no longer here, and my voice of reason is mute.  My physical voice has no reason. 


I think mom would say: "You're OK. You're on the right path. Taniya, be patient and move quietly." 


Yea, that's what she would say.