Seriously, stop it!
- My son who has autism has an aide at school because he has "special needs."
- My wife has a custom van, equipped with hand controls because she has "Special needs."
- This lady I know had a seat installed in her shower, because she has "Special needs."
- We widened our bathroom doorway, so our daughter with "Special needs" could get her wheelchair through it.
As a child the term "special needs," felt isolating, and patronizing. As an adult it's downright infuriating!
Say it with me I have a DISABILITY! (if you want to get technical - I have a few disabilities). I am one of the 56.7 million people in the US living with a disability. As a community we don't have special needs...We have needs.
There's nothing special about independent daily hygiene. The girl whizzing past you in her hot pink wheelchair doesn't have special needs... she needs to get to class. Me sitting in my adapted car, in rush hour traffic is as normal and mundane as it gets. The amputee you saw open the Ketchup bottle with his teeth didn't do so because he has "special needs." He just didn't want to eat a dry hamburger. It was 89 degrees out today. I needed my ceiling fan on. That took a step stool, some acrobatics and a salad tong. ... not because I have special needs, but because I needed to cool off.
We live in a world that wasn't built for us, and we know it. We're innovators!
No one said Thomas Edison had "special needs" because he needed light after the sun set.
We can't promote inclusion, and gloss over a series of challenges by calling them "special needs." The two can't coexist. If you take my "average" and apply it to you "normal" my needs will always look "special," because they look DIFFERENT!
Just hearing the words "special needs" can send some people into a panic.
-Will I be able to teach him using my current teaching methods? Maybe he should be in a special ed class.
-If I hire her what type of accommodations will I need to make?
-Are you sure she can raise her child on her own?
-
Sure, the term"special needs," made our parents feel comfortable. It's a nice Politically correct term, that allows people, groups and organizations feel progressive.
But it's decisive. It discreetly categorizes us into those who can and those who can't!
We've all seen the feel good video of the small coffee shop that employs people with Down Syndrome. Aww isn't it so kind that, the shop owner wants to give people with "special needs" a job.
We swooned when we saw the picture of the football player taking the "special needs" girl in a wheelchair to the prom.
Stop smiling and swooning ....
Stop saying special needs!
Wednesday, May 2, 2018
Saturday, April 14, 2018
Well well ...well ... I'm back.
It's been quite some time since I last posted. "I'm too busy." I said. Yet, somehow I found time to take online surveys, earning amazon and Walmart gift cards. I'v taken countless Facebook quizzes. I now know what type of onion I would be, what Disney princess I look like and what color my soul is. Sounds real busy, huh?
The truth is I haven't been inspired, and I ran out of words. How many ways can I say I'm now a badass woman who once upon a time was terrified by her own reflection?
Last night, I realized my 22 year old self, reared her misguided head, and I hadn't noticed. Through the proverbial rear view mirror I was forced to confront some of my decisions over the past two years.
At 30, I threw the Molotov Cocktail that was filled with the insecurities of high school, and rejections of collage. I watched it explode and burn before me. I had never felt more liberated than I did the day after my 30th birthday party.
Around 35 I went from getting dressed up and thinking I looked "nice" to thinking "Damn I'm hot!"
In the fall of 2016 I met someone, who I'd admired from a far for a decade.That person made me feel beautiful in the most intimate of ways. I wasn't too small. I wasn't too scarred. I just was. In an instant I thought this person "gets it." He was physically and philosophically my equal. I thought this person could be the Yin to my Yang.
I never communicated that. Our communication was sparse, at best. So I assumed any talk of Yin yangs would be a bit premature. So I did what I do so well .. I acted. I tried to meet him where I THOUGHT he was. I was not my authentic self, because I assumed what he would want was a slightly altered version of who I am at my core.
I heard through the grapevine that he found his yang, and she is closer to to who I truly am, than I was two years ago.
You can't claim self love while trying to reshape yourself to fit inside the crevices of another's mind. The two can't coexist. I can't love my scars and try to scrub them off at the same time. I can't share my desires if they change depending on the audience in front of me.
One must not confuse growth with change. Growth is an organic process that should be embraced. Change is something mechanical that requires effort. Great thought is needed to "change." Growth can happen when when you're not even paying attention.
Always grow but never change.
It's been quite some time since I last posted. "I'm too busy." I said. Yet, somehow I found time to take online surveys, earning amazon and Walmart gift cards. I'v taken countless Facebook quizzes. I now know what type of onion I would be, what Disney princess I look like and what color my soul is. Sounds real busy, huh?
The truth is I haven't been inspired, and I ran out of words. How many ways can I say I'm now a badass woman who once upon a time was terrified by her own reflection?
Last night, I realized my 22 year old self, reared her misguided head, and I hadn't noticed. Through the proverbial rear view mirror I was forced to confront some of my decisions over the past two years.
At 30, I threw the Molotov Cocktail that was filled with the insecurities of high school, and rejections of collage. I watched it explode and burn before me. I had never felt more liberated than I did the day after my 30th birthday party.
Around 35 I went from getting dressed up and thinking I looked "nice" to thinking "Damn I'm hot!"
In the fall of 2016 I met someone, who I'd admired from a far for a decade.That person made me feel beautiful in the most intimate of ways. I wasn't too small. I wasn't too scarred. I just was. In an instant I thought this person "gets it." He was physically and philosophically my equal. I thought this person could be the Yin to my Yang.
I never communicated that. Our communication was sparse, at best. So I assumed any talk of Yin yangs would be a bit premature. So I did what I do so well .. I acted. I tried to meet him where I THOUGHT he was. I was not my authentic self, because I assumed what he would want was a slightly altered version of who I am at my core.
I heard through the grapevine that he found his yang, and she is closer to to who I truly am, than I was two years ago.
You can't claim self love while trying to reshape yourself to fit inside the crevices of another's mind. The two can't coexist. I can't love my scars and try to scrub them off at the same time. I can't share my desires if they change depending on the audience in front of me.
One must not confuse growth with change. Growth is an organic process that should be embraced. Change is something mechanical that requires effort. Great thought is needed to "change." Growth can happen when when you're not even paying attention.
Always grow but never change.
Sunday, January 31, 2016
It's like the inside of a tornado
I've been telling everyone who'll listen that I'm almost two years seizure free. I was met with a very intriguing respone from someone very close to me: "What does a seizure feel like? Do you remember what they're like?" Of course I remember what they're like, but it's not something I ever ever thought about, in descriptive terms. "How do you feel?" someone would ask, after a seizure would end, and I could communicate again. "Tired, and scared." Is how I would, always respond. By the time they were over I my body would ache, and mentally I'd be exhausted. I never gave much thought to what the actual seizure felt like.
It's like being in the inside of a tornado! Except there is no weather forecaster to tell you one is coming, so you can board up your windows and protect yourself.
I remember the first seizure I ever had. It was 2005. I was driving, and it started to snow. I'm from New York, snow is nothing unusual here. The start of that day's flurries sent me into an indescribable panic. I got lost one town away from the town I grew up in. I was on roads I had traveled several times before. Under normal circumstances I wouldn't have been lost. I took out my cell phone and started making random calls asking for help and directions. In the middle of that tornado I saw people, and landmarks that didn't exist. What I didn't see was the tree that did exist, that my tornado pulled my car right into.
I was blessed (and cursed) with awareness during my seizures. I could see the world as it spun around me. I couldn't slow it down, or control it. I was aware of the panic on the faces, of those around me. There was no pause button, to slow things down for the 15 seconds it would take for me to say, to them,"I'm ok!"
There's a loss of control, that you don't willingly give up. The irony of being rendered powerless by the, same body part that gives you control of your entire being, is sickening!
I distinctly remember, having a seizure, while sitting with my back against a wall. I unwillingly started banging my head against that wall. I thought, out loud: "Taniya, stop banging your head! You already had one Brain injury, do you want another one?" As the tornado spun, my physical body would not make the connection with my cognitive thoughts!
Maybe it's true: To think is easy to do is hard. Is that why they say talk is cheap?
Much like the fictional tornado, that takes Dorothy to Oz, all you want to do is find your way back. You lose what feels like hours, of time in a matter of minutes. Then you spend the next few hours picking up the fragmented pieces of what was your day , before the tornado came pummeling through you.
Dorothy get's caught in a tornado and sees a tin man, lion and talking scarecrow. During some of my seizures I've seen: a purple house, a cop wearing bunny ears, a black man delivering Chinese food and two Asian men dancing, in my hospital room, and a talking unicorn with an English accent.
...It's like a tornado. Having a seizure feels like getting trapped in the center of an out of control tornado.
It's like being in the inside of a tornado! Except there is no weather forecaster to tell you one is coming, so you can board up your windows and protect yourself.
I remember the first seizure I ever had. It was 2005. I was driving, and it started to snow. I'm from New York, snow is nothing unusual here. The start of that day's flurries sent me into an indescribable panic. I got lost one town away from the town I grew up in. I was on roads I had traveled several times before. Under normal circumstances I wouldn't have been lost. I took out my cell phone and started making random calls asking for help and directions. In the middle of that tornado I saw people, and landmarks that didn't exist. What I didn't see was the tree that did exist, that my tornado pulled my car right into.
I was blessed (and cursed) with awareness during my seizures. I could see the world as it spun around me. I couldn't slow it down, or control it. I was aware of the panic on the faces, of those around me. There was no pause button, to slow things down for the 15 seconds it would take for me to say, to them,"I'm ok!"
There's a loss of control, that you don't willingly give up. The irony of being rendered powerless by the, same body part that gives you control of your entire being, is sickening!
I distinctly remember, having a seizure, while sitting with my back against a wall. I unwillingly started banging my head against that wall. I thought, out loud: "Taniya, stop banging your head! You already had one Brain injury, do you want another one?" As the tornado spun, my physical body would not make the connection with my cognitive thoughts!
Maybe it's true: To think is easy to do is hard. Is that why they say talk is cheap?
Much like the fictional tornado, that takes Dorothy to Oz, all you want to do is find your way back. You lose what feels like hours, of time in a matter of minutes. Then you spend the next few hours picking up the fragmented pieces of what was your day , before the tornado came pummeling through you.
Dorothy get's caught in a tornado and sees a tin man, lion and talking scarecrow. During some of my seizures I've seen: a purple house, a cop wearing bunny ears, a black man delivering Chinese food and two Asian men dancing, in my hospital room, and a talking unicorn with an English accent.
...It's like a tornado. Having a seizure feels like getting trapped in the center of an out of control tornado.
Thursday, February 5, 2015
Exploitation, inspiration, admiration. what makes that distinction?
There's been an ongoing dialogue, within the disabled community, about the "I word" and wether that's a compliment or downright blatant exploitation. Most of the question, stems from the barrage of images depicting a disabled person doing something "extraordinary." In many cases these "extraordinary" moments, are fleeting everyday activities. Such images have, even, been dubbed "inspiration porn." I have a dog in this fight, and to be honest even I don't understand that.
The idea is that we are exploited to give able- bodied people something to be grateful for. Somehow my existence fuels someone's hope, and appreciation for having a "good life" isn't an idea that I subscribe to. I took this idea to my sister. She's 5 years younger than me, and has lived through the good, bad and ugly with me. she's "able- bodied" but has a very clear, concise understanding of what it means to be disabled. I asked what things went through her head when she saw someone in a wheel chair pushing a shopping cart, or an amputee driving. She said "it's normal. Everyone needs to grocery shop." She was quick to point out that growing up, in our house, there was nothing abnormal about wheelchairs, walkers and physical "abnormalities." I then asked her if looking at me, and knowing my physical limitations ever made her feel better about her life. She said "No. If anything I just never understood how you did it." Did what? "Did things you knew you couldn't, and accept that things were hard for you, ignore that people stared at you." I know she's bias. But if that's what the world thinks when they see the amputee on top of a mountain, or the woman in the wheelchair snuggle her baby that's admiration, not inspiration. We're using the terms interchangeably, and they're not!
I've been completely open and honest with regard to how I feel about the word "inspiration," but it bares repeating. I want to inspire. I relish opportunities, when I can do so. I'm in the unique position where my life, has given me wisdom, and tools necessary to navigate through some really dark times. I want to share those parts of myself. Where I draw the line is at being an "inspiration" for living a mundane everyday life. Being inspired by my trip to target is metaphorically patting me on the head saying "Good brave girl you ventured out into the world all by yourself."
However, we're a society that thinks in images. A picture is still worth a thousand words. And yes, there is something very "inspiring" about a photo of a person defying the physics of their own body. That's reason the world loved Oscar Pistorius, and affectionately called him "the blade runner." To this day we can see a picture of Martin Luther King, and still admire the bravery and courage it took to be him. He inspired a world to change.
To be inspired by someone doesn't mean we had to pity them first.
The idea is that we are exploited to give able- bodied people something to be grateful for. Somehow my existence fuels someone's hope, and appreciation for having a "good life" isn't an idea that I subscribe to. I took this idea to my sister. She's 5 years younger than me, and has lived through the good, bad and ugly with me. she's "able- bodied" but has a very clear, concise understanding of what it means to be disabled. I asked what things went through her head when she saw someone in a wheel chair pushing a shopping cart, or an amputee driving. She said "it's normal. Everyone needs to grocery shop." She was quick to point out that growing up, in our house, there was nothing abnormal about wheelchairs, walkers and physical "abnormalities." I then asked her if looking at me, and knowing my physical limitations ever made her feel better about her life. She said "No. If anything I just never understood how you did it." Did what? "Did things you knew you couldn't, and accept that things were hard for you, ignore that people stared at you." I know she's bias. But if that's what the world thinks when they see the amputee on top of a mountain, or the woman in the wheelchair snuggle her baby that's admiration, not inspiration. We're using the terms interchangeably, and they're not!
I've been completely open and honest with regard to how I feel about the word "inspiration," but it bares repeating. I want to inspire. I relish opportunities, when I can do so. I'm in the unique position where my life, has given me wisdom, and tools necessary to navigate through some really dark times. I want to share those parts of myself. Where I draw the line is at being an "inspiration" for living a mundane everyday life. Being inspired by my trip to target is metaphorically patting me on the head saying "Good brave girl you ventured out into the world all by yourself."
However, we're a society that thinks in images. A picture is still worth a thousand words. And yes, there is something very "inspiring" about a photo of a person defying the physics of their own body. That's reason the world loved Oscar Pistorius, and affectionately called him "the blade runner." To this day we can see a picture of Martin Luther King, and still admire the bravery and courage it took to be him. He inspired a world to change.
To be inspired by someone doesn't mean we had to pity them first.
Wednesday, October 8, 2014
Is it a change of heart or giving up?
What is it that separates changing your mind from giving up on your current situation? That's a good question, isn't it? It's a question that I've recently been challenged with.
I've always advocated living with passion. I always tried, my best, to live my life by that. If I don't have passion for it I feel it's not worth doing. That being said; I've noticed that my passion has been guided by the possibility of success. I found myself locked in my comfort zone. I rarely venture outside of things that I'm good at. That probably explains why I've resigned myself to being an eternal student. However, as I've gotten older my priorities have changed. It's no longer the possibility for success that drives my passions. It's the other way around, as it should be.
I'm struggling to get to the most recent goal that I've set. I've lost the passion for it. One might ask "which came first the chicken or the egg? Did I lose passion because I'm struggling? Or am I struggling because I lost passion? After much introspection I can say with 100% clarity that I don't have the passion to propel me forward in this direction. While trying to make myself feel something I no longer do I'm making myself miserable. I'm not in pursuit of a passion, right now. I'm pursuing SUCCESS. I'm going after a way to make a life for myself, in which I'm well paid and live a comfortable life. A career in medicine is something great and something that I did have passion for. At some point down this path that passion fell apart, where it is merely fragments that lay at my side.
When you put your focus on what your heart wants often your ideal changes. So yes, you can have a change heart the minute you let yourself be guided by it. Once I quiet the practical brain I see I'm not having a "change of heart" A change of heart is when you allow yourself to be guided and fueled by a passion that may lead you down an impractical path. "Giving up is a conscious decision to stop trying altogether.
I've never given up on anything in my entire life! However, I do reserve the right to to have a "change of heart."
I've always advocated living with passion. I always tried, my best, to live my life by that. If I don't have passion for it I feel it's not worth doing. That being said; I've noticed that my passion has been guided by the possibility of success. I found myself locked in my comfort zone. I rarely venture outside of things that I'm good at. That probably explains why I've resigned myself to being an eternal student. However, as I've gotten older my priorities have changed. It's no longer the possibility for success that drives my passions. It's the other way around, as it should be.
I'm struggling to get to the most recent goal that I've set. I've lost the passion for it. One might ask "which came first the chicken or the egg? Did I lose passion because I'm struggling? Or am I struggling because I lost passion? After much introspection I can say with 100% clarity that I don't have the passion to propel me forward in this direction. While trying to make myself feel something I no longer do I'm making myself miserable. I'm not in pursuit of a passion, right now. I'm pursuing SUCCESS. I'm going after a way to make a life for myself, in which I'm well paid and live a comfortable life. A career in medicine is something great and something that I did have passion for. At some point down this path that passion fell apart, where it is merely fragments that lay at my side.
When you put your focus on what your heart wants often your ideal changes. So yes, you can have a change heart the minute you let yourself be guided by it. Once I quiet the practical brain I see I'm not having a "change of heart" A change of heart is when you allow yourself to be guided and fueled by a passion that may lead you down an impractical path. "Giving up is a conscious decision to stop trying altogether.
I've never given up on anything in my entire life! However, I do reserve the right to to have a "change of heart."
Tuesday, September 23, 2014
Moving mountains
I recently began a rapport with someone, incredible. I wont apply the pressure of saying he "inspires" me me. But I can say that he makes want to be a better version of myself. Occasionally the topic of mountains comes up. I can't help but see the beauty in that metaphor, as it applies to the human condition.
The most glorious lie ever told is that self belief is all you need. Society perpetuates the story of "The Little Engine That Could." - "I think I can, I think I can ..." It's a resounding untruth that is forced upon most of us. Especially, those of us who face any challenges. Here's what we're not told: Self belief without actual application is just a dream, that will probably never come to fruition.
We are all standing before a mountain. Regardless of the size we are all staring directly at some mountain. And there we stand with all the faith and that we can get past this mountain. We believe we can. We have that faith someone or something will get us to the other side of this mountain. Some of us stand there and scream "Get out of my way!" Some of us get frustrated and emotionally cave to the grandeur of this thing before us. We doubt everything we thought about ourselves. Because we stand here believing in ourselves and in our abilities, but this mountain wont listen. We can't get it to move!
Here's the truth: This mountain can't move. It is a part of the earth, a formation that existed long before we got here. We'll never be able to make it move, and we can't magically walk through it. The only way to the other side is to take the long trek up: become bruised, watch the calluses form and allow yourself to feel your grip to hold on. You'll most certainly feel the ache, and fatigue but you don't stop, because you know you'll fall and all the previous work will be for naught. And when you think you cannot make another move you realize you're at the top. From there you can scream to the world: "I am bruised, and I am tired, but I am now as strong as I BELIEVED I was. Then with very little effort you descend the other side. And there you stand seeing things unfolding that were previously blocked from view. Undoubtedly, there will be another mountain. It won't necessarily be any smaller, but will be far easier to climb. The strength, courage and endurance that blossomed inside you, as a result of that first uphill climb has set you up for the next one, and the one after that .... and thus success is achieved. And the world will look vastly different from the opposite side of every mountain you climb. So don't tire yourself out screaming, and begging for that mountain to move. Take all you have right now, strap it to your back, grip tight and start climbing.
The most glorious lie ever told is that self belief is all you need. Society perpetuates the story of "The Little Engine That Could." - "I think I can, I think I can ..." It's a resounding untruth that is forced upon most of us. Especially, those of us who face any challenges. Here's what we're not told: Self belief without actual application is just a dream, that will probably never come to fruition.
We are all standing before a mountain. Regardless of the size we are all staring directly at some mountain. And there we stand with all the faith and that we can get past this mountain. We believe we can. We have that faith someone or something will get us to the other side of this mountain. Some of us stand there and scream "Get out of my way!" Some of us get frustrated and emotionally cave to the grandeur of this thing before us. We doubt everything we thought about ourselves. Because we stand here believing in ourselves and in our abilities, but this mountain wont listen. We can't get it to move!
Here's the truth: This mountain can't move. It is a part of the earth, a formation that existed long before we got here. We'll never be able to make it move, and we can't magically walk through it. The only way to the other side is to take the long trek up: become bruised, watch the calluses form and allow yourself to feel your grip to hold on. You'll most certainly feel the ache, and fatigue but you don't stop, because you know you'll fall and all the previous work will be for naught. And when you think you cannot make another move you realize you're at the top. From there you can scream to the world: "I am bruised, and I am tired, but I am now as strong as I BELIEVED I was. Then with very little effort you descend the other side. And there you stand seeing things unfolding that were previously blocked from view. Undoubtedly, there will be another mountain. It won't necessarily be any smaller, but will be far easier to climb. The strength, courage and endurance that blossomed inside you, as a result of that first uphill climb has set you up for the next one, and the one after that .... and thus success is achieved. And the world will look vastly different from the opposite side of every mountain you climb. So don't tire yourself out screaming, and begging for that mountain to move. Take all you have right now, strap it to your back, grip tight and start climbing.
Sunday, September 21, 2014
What we leave behind
When our tombstones are carved they will inevitably have the date we were born a ----- followed by the date of our death. We all know the date on which we were born. Our loved ones will sadly know the day we died. But who will really know the -----? What seems like a pointless way to separate those two dates is really everything that we've done in between. That dash interrupts who we were when we we arrived from the person we were when we died. That represents an entire life lived. Who will know, or care about that "space.?" I think everybody wants to leave behind some kind of "legacy" We all have the desire to be remembered, and to mean something. Therein lies our quandary.
At it's root what does it actually mean to "mean something?"How many people must one impact, or share themselves with to feel like they've meant something? The answer to that question is there is no real answer. We're bombarded with images of people who, in our eyes, mean something: Men contracting the Ebola Virus trying to help children, who have it, in Africa. Veterans returning from a war, most of us know little about. Commercials of people wrapping wounded puppies in blankets while a depressing Sarah Mcgloghlin song echos eerily in the background. Then we're moved, and touched, and sometimes even envious of these glorious beings that are doing things that will ultimately "mean something." It's a vicious trap that is so easy to get caught in.
I'm extremely guilty of this. I've always known that whatever I do would be great. But I also knew that I needed it to be profound, and have a huge impact. As far back as I can remember I've wanted to change the world. When I was nine I sat in my parents kitchen, with my Smithsonian Chemistry set convinced I was going to find a cure for AIDS. With every bubbling reaction a created I believed I was on the cusp of saving lives. I ignored the fact that every bottle in that set had a label that read "Warning harmful if swallowed." For years my quest for greatness marched on. I wanted to find undiscovered planets that I'd tell NASA about, and ultimately have named after me.
Was I a narcissist or just really naive? Perhaps a little of both. The quest to mean something and impact people is at the core of who I am. Yet I'm forced to question why I want it on a grand scale. When I'm gone I have a desire that everyone knows what that dash between my dates of birth and death meant. And that is where I've gone astray.
I saw a man at the gas station, the other day. I asked him to help me with using my debit card at the pump, because I can't see the screen. He graciously gave me assistance, and in a roundabout way told me he hoped the 5 dollars he had would get him home to Farmingdale. I knew with the price of gas 5.00 would barely get him down the street! I thanked him for his help and ran inside and paid the clerk 10 dollars for that man to have an additional 10 bucks worth of gas. That man was extremely grateful, and thanked me more times than I can count. When we parted ways I knew, regardless of how infinitesimal I had meant something. In that small act of kindness I had an impact on someone's day.
While little things may not be life changing, or world enhancing. They do make the world a slightly better place. It was Ralph Waldo Emerson who said: "The purpose of life is not to be happy. It is to be useful, to be honorable, to be compassionate, to have it make some difference that you have lived and lived well.”
Sunday, September 14, 2014
The "I" word.
I've been reading and hearing a lot of talk about use of the word "inspiration." The opinions vary, as much as usage does. Some within the "disabled" community find the word "degrading" in a sense. While others feel it is an endearing compliment. I know you can't play on both sides of the fence, but with this subject I do.
I've always, strongly, hated being called an inspiration for doing things that were naturally expected of my peers. When people called me an inspiration for going to college I'd cringe. The implication was that I couldn't or wouldn't achieve such a "normal" milestone under, what others viewed, as an "abnormal" existence. What those people ignored was it was (is) my existence. it was all that I have ever known, therefore, I saw nothing abnormal about it. I lived/live the life I was given. What's so abnormal about that? So don't be inspired by my trips to Target, or my ability to have an average day, just like yours.
The word "inspiration" can often be "crippling" What is so ingrained in me, at this point is: I can't falter. I can't fail, I can't quit on anything. Why? Because the first half of my life has served as demonstration of "overcoming", to family, friends, and people who barley knew me. Just my getting in my car, and getting on the highway has inspired somebody. So it often feels a normal moment without great achievement lets down the world. I'm struggling through a Chemistry class, and I want to drop out of it. Someone actually said "But you've already been through so much!" Big deal! I have been through alot, but I don't want to go through Chemistry! I know that image of failure, or my giving up pulls away some of my "inspiration" status for you.
I once said I've never done anything special. I believed ] that anyone would have done the things I did if they had to. That was some naive attempt at humility. The truth is: No, not everybody could weather my storm ...That's why it was my storm. But what everyone can do is stand back up in the middle of their own storm. Wether or not they do is a choice.
,
In the appropriate circumstances and for a valid reason the word inspiration is a compliment that touches me deeply. Ok, yea my graduating college with honors, the same year I almost died from a cerebral hemorrhage might be inspiring. But what touches me most is when a kid, from one of the classes I've spoken to. A young boy, the target of bullying calls me inspiring and wants a hug. I know there is purpose and legitimate reason for him saying that. Or when someone who has intimate knowledge of the path I've walked says it, I'm overjoyed. That means that person has watched me fight, and validates that I've made good choices, and when it all ends my struggles have meant something, to someone I value.
Where outsiders have seen strength and determination, my family saw insanity. My family watched me ignore,medical advice, make up my own rules, and do drastic things with the hope that it would all work out. That, somehow, it would all be worth it.
So if you're going to find inspiration find it in the fact that I live my life, Not in the fact that I live my life despite the way you THINK it could have been lived. Driving a car, being in college, having a social life, none of that should be inspiring. Nor do I want these things to serve as some "power" that someone uses in their time of great trial. Admiration and insipation are two very different things. You can admire my character and attitude without thinking my life can provide some footprint for you to follow, simply because I get up every morning and plant my feet on the ground. Because I'm pretty sure you do that too!
Wednesday, July 9, 2014
First comes LOVE ... then comes marriage
I haven't had the most productive "love life." Of all the things, in my life, that didn't fit into the mold of living "normally" my love life is the one that plagues me the most.
It was in high school that I realized that having a disability may actually put me at a "disadvantage" where men and relationships were concerned. It worried me a little, but I was only 16. I had plenty of time to deal with those issue. Never did I think that on the cusp of my 34th birthday I'd still be dealing with this.
I was talking with my best friend about dating and the desire to find "Mr. Right." "It's not easy being a 4' tall woman and finding someone to see beyond that. I know I'm not "standard." Those words fell right out of my mouth without my even noticing. It wasn't until I was alone, that night, in the quiet of my mind that I realized I verbalized those thoughts. While those are feelings I had, they were also feelings I kept secret. Even when those feelings were my reality I never uttered those words aloud. To share that with someone made me vulnerable to some confirming and solidifying the way I felt.
I live my life with unmatched confidence. I've broken boundaries and overcome obstacles with ease and grace. I always thought I embodied the cliche of: I get knocked down and get right back up. Yet when it comes to love and relationships my self-esteem is crippled. The confidence I pride myself in, is replaced with doubt and fear.
I was in love, with a man who said "I love you." No one had ever said that to me before. I had finally heard it, and those words resonated so deeply in every cell in my body. My heart was feed, as I heard "I love you" on a daily basis. I was having a love affair with the idea of being in love. When that ended my heart was shattered. He actually said "I'm too superficial for you." At that point everything I thought I thought I believed about myself and my world were now just fragmented questions. I'm just like everybody else. Was I, really? I'll eventually meet my prince charming. Is that possible? People see beyond physical differences once they get to know you. Really? Who are these people, and on what planet do they exist?
So I took everyone's advice and "put myself out there and tried "dating." How else do you date in 2014? You join dating websites and go on a bunch of awkward first dates at Applebees. Every date or initial first meeting, at a coffee shop, was my campaign to be seen for who I am. We'd ignore the elephant in the room. And that goodnight hug, would be some poorly choreographed "routine" that started with me wrapping my arms around some man's waist, and ended with him crouching down on one knee. (and not with a ring!) After all, it looked rater odd and inappropriate for my head to be inches away from a man's crotch in the doorway of some restaurant. So naturally a true gentleman (or any man that didn't want our encounter to be anymore "strange" and uncomfortable.) would prefer to crouch on his knee.
There was never a "natural" way to address that elephant in the room. What could I say? "Yea, I'm 4 feet tall. And yes I drive. Sure, I live a normal life. Yup, sex is a possibility ..." And run off the rest of the list of things I can do? So made sure it was known and accepted ahead of time. I updated online profiles to include that I had physical differences, and if that would be a problem or something that couldn't be accepted let's not waste each other's time. Or if met someone at a bar or Starbucks I'd openly preform my daily "acrobatics" to climb up on the stool or reach the straws, and things like that. As strange as it is, it was may way of saying: "yea, I'm different but I handle it." If you can get a guy to still chat with you after you've used the corner of his stool to push yourself up on yours, you can be sure he got the message.
However, being blunt and open has also backfired. Now what I'm getting in return is the tongue in cheek "you're the perfect height" joke. If I had a nickel for every time I heard that I'd be able to retire tomorrow. Most recently I heard "I always had a fantasy of being with a little person. Would you wanna go out, and maybe make a baby." So now I'm some kinky fantasy? I can't win!
It was in high school that I realized that having a disability may actually put me at a "disadvantage" where men and relationships were concerned. It worried me a little, but I was only 16. I had plenty of time to deal with those issue. Never did I think that on the cusp of my 34th birthday I'd still be dealing with this.
I was talking with my best friend about dating and the desire to find "Mr. Right." "It's not easy being a 4' tall woman and finding someone to see beyond that. I know I'm not "standard." Those words fell right out of my mouth without my even noticing. It wasn't until I was alone, that night, in the quiet of my mind that I realized I verbalized those thoughts. While those are feelings I had, they were also feelings I kept secret. Even when those feelings were my reality I never uttered those words aloud. To share that with someone made me vulnerable to some confirming and solidifying the way I felt.
I live my life with unmatched confidence. I've broken boundaries and overcome obstacles with ease and grace. I always thought I embodied the cliche of: I get knocked down and get right back up. Yet when it comes to love and relationships my self-esteem is crippled. The confidence I pride myself in, is replaced with doubt and fear.
I was in love, with a man who said "I love you." No one had ever said that to me before. I had finally heard it, and those words resonated so deeply in every cell in my body. My heart was feed, as I heard "I love you" on a daily basis. I was having a love affair with the idea of being in love. When that ended my heart was shattered. He actually said "I'm too superficial for you." At that point everything I thought I thought I believed about myself and my world were now just fragmented questions. I'm just like everybody else. Was I, really? I'll eventually meet my prince charming. Is that possible? People see beyond physical differences once they get to know you. Really? Who are these people, and on what planet do they exist?
So I took everyone's advice and "put myself out there and tried "dating." How else do you date in 2014? You join dating websites and go on a bunch of awkward first dates at Applebees. Every date or initial first meeting, at a coffee shop, was my campaign to be seen for who I am. We'd ignore the elephant in the room. And that goodnight hug, would be some poorly choreographed "routine" that started with me wrapping my arms around some man's waist, and ended with him crouching down on one knee. (and not with a ring!) After all, it looked rater odd and inappropriate for my head to be inches away from a man's crotch in the doorway of some restaurant. So naturally a true gentleman (or any man that didn't want our encounter to be anymore "strange" and uncomfortable.) would prefer to crouch on his knee.
There was never a "natural" way to address that elephant in the room. What could I say? "Yea, I'm 4 feet tall. And yes I drive. Sure, I live a normal life. Yup, sex is a possibility ..." And run off the rest of the list of things I can do? So made sure it was known and accepted ahead of time. I updated online profiles to include that I had physical differences, and if that would be a problem or something that couldn't be accepted let's not waste each other's time. Or if met someone at a bar or Starbucks I'd openly preform my daily "acrobatics" to climb up on the stool or reach the straws, and things like that. As strange as it is, it was may way of saying: "yea, I'm different but I handle it." If you can get a guy to still chat with you after you've used the corner of his stool to push yourself up on yours, you can be sure he got the message.
However, being blunt and open has also backfired. Now what I'm getting in return is the tongue in cheek "you're the perfect height" joke. If I had a nickel for every time I heard that I'd be able to retire tomorrow. Most recently I heard "I always had a fantasy of being with a little person. Would you wanna go out, and maybe make a baby." So now I'm some kinky fantasy? I can't win!
Sunday, June 29, 2014
The superstition of being "well."
I'm sure we've all experienced the feeling of "this is too good to be true." Bathed in euphoria as a persistent thought floats in and out of our consciousness: "This can't last." I've heard this in reference to: lovers in new relationships, excited new employees who feel they've landed the perfect job. However, there is one group that this feeling resonates with, louder than any other.
Ask any person that has battled, fought, or beat any disease, illness, disorder and they'll tell you that fleeting thought of "this can't last" strikes utter panic amidst the euphoria of feeling "well." In a misguided attempt to hold on to your "victory a superstition can take root. With each passing minute, hour, and day the superstition grows bigger.
I woke up the other day and realized that I haven't had a seizure in 6 months. I wanted to shout that from the mountain tops but I quickly hushed myself. "Shhh you don't wanna jinx this." I did the same thing when medication was reduced and I was still seizure free. Even as I type this a small voice is echoing that superstition so loudly I can barely hear my own thoughts. - I said I've been seizure free 6 months. In saying that did I ruin the possibility for 7 months?
Health is such a continuum with an ever changing status. I WAS seizure free for over a year. What about the woman who's Breast Cancer WAS in remission? Or the little girl who WAS doing so well in physical therapy? Or when my mom WAS making progress?
What is it that transforms the "is" or "am" that belongs in those sentences to "WAS?" Is it some silly jinx? Is it a matter of counting our chickens before they hatch? Maybe it simply is the fact that things ebb and flow. Life has peeks and it also has valleys. That includes the status of your health.
The challenge is to temper caution with optimism. Find a way to stand upon those peeks and shout "I FEEL GREAT!" when you do, while maintaing a healthy respect for a valley that is just beneath you. There will always be an "is" that will become a "was" or an "am" about to be an "am NOT." The only "jinx" there is is the one in your head that will cheat you and everyone who loves you out of the joy of acknowledging the fact that you're feeling well and thriving!
As for me: I'm doing great! I'm back in my car, off one medication, got my hair cut and am back to living my life the way I'm use to. Oh yea .... I'm still SEIZURE FREE! (shhh ... don't tell the part of me that hasn't fully given up the superstition that I told you!)
Friday, April 25, 2014
Yield in order to proceed
I took my first test since having surgery (surgeries.) And of all the test that it could, it was a midterm. The moment the test date was announced is the moment I realized how truly worried I, about what I may have lost. I willingly gave up 3 weeks of classes so I know that I lost those lectures, and those notes. But I also may have lost things beyond my control? I needed to know that my academic cognition was still, as I left it before surgery. My memory retention and recall would need to work. the word "midterm" carried he weight of all that. It also brought with it the reality that I, knowingly, risked all of that.
So much of my identity revolves around academics and how "smart" I am, and can be. I spent elementary straight through high school fighting stigmas, and misjudgments about my capabilities. So now I wear my GPA like some vindication badge of honor. I'd probably tattoo it across my forehead if they'd let me. Maybe that's why I'm 33 and still in school.
On the day of the midterm I stared down at that Scantron and thought to myself "Taniya, you better not have screwed this up for yourself!" I filled in my bubbles. Some I colored in with unwavering confidence, and some with dread. I went home that night and went over every question, I could, remember, in my head. I analyzed every question, searched through notes to try to find the potential answer. This was my effort to calculate which questions I definitely got wrong, and what my ultimate grade would be.
I got my test back on Wednesday, and I got an 88. If this had been a year ago I would have went home with my tail between my legs, completely dissatisfied. I spent hours studying, I lost sleep, and I stressed like crazy. It was at that point that I mentally slapped myself. Because if this were a year ago I would have still done all the above, and then had a seizure during the test.
This 88 was more than just a grade. This 88 is hope. This 88 is also proof that the gamble I took didn't cost me anything. I'm still "OK." it's too soon to speak the words "seizure free," but I can say that I got through an event that would often trigger a seizure, for me. (stress and lack of sleep.) and got through it "seizure free" and still have a brain that works well enough to get an 88 on a Neuroscience midterm. At this moment I can smile and say That's better than getting 100!!
So much of my identity revolves around academics and how "smart" I am, and can be. I spent elementary straight through high school fighting stigmas, and misjudgments about my capabilities. So now I wear my GPA like some vindication badge of honor. I'd probably tattoo it across my forehead if they'd let me. Maybe that's why I'm 33 and still in school.
On the day of the midterm I stared down at that Scantron and thought to myself "Taniya, you better not have screwed this up for yourself!" I filled in my bubbles. Some I colored in with unwavering confidence, and some with dread. I went home that night and went over every question, I could, remember, in my head. I analyzed every question, searched through notes to try to find the potential answer. This was my effort to calculate which questions I definitely got wrong, and what my ultimate grade would be.
I got my test back on Wednesday, and I got an 88. If this had been a year ago I would have went home with my tail between my legs, completely dissatisfied. I spent hours studying, I lost sleep, and I stressed like crazy. It was at that point that I mentally slapped myself. Because if this were a year ago I would have still done all the above, and then had a seizure during the test.
This 88 was more than just a grade. This 88 is hope. This 88 is also proof that the gamble I took didn't cost me anything. I'm still "OK." it's too soon to speak the words "seizure free," but I can say that I got through an event that would often trigger a seizure, for me. (stress and lack of sleep.) and got through it "seizure free" and still have a brain that works well enough to get an 88 on a Neuroscience midterm. At this moment I can smile and say That's better than getting 100!!
Friday, April 4, 2014
When there's a curve in the road be sure to bend with it
My final epilepsy surgery was competed in February. I had the same team of amazing people rallying around. There were times when I couldn't tell who wanted this to work, more: me, my doctors, my family or my friends. The love and support I felt was overwhelming.
I spent my first night in the Neuro ICU, blissfully unaware of what my head had just endured. The question people ask, most often, is: Did it hurt? YES. I have high pain tolerance, and try to avoid narcotic pain killers, but that was not possible this time around! Being a "neuro patient" I got the joy of being harassed with a neurological assessment every 4 hours! That basically means some nurse would wake me, from my drug induced slumber, by shining a light in my eyes. They would then ask me any combination of the following questions: : "What's your name?" "What's today's date?" Who's the president? Some questions received some snarky answers. Like: "Even if I did suffer some neurological deficit during surgery I think I would have memorized that Obama is the president based on the last 12 times someone has come in here to ask me, before your shift even started! ICU or not I felt well enough to remain my charming sarcastic self.
By day 2 it was my neurological assessment that I was going through. One of the very first things I established when i opened my eyes was that I could still see ... out of both eye. it sounds strange, and I know that. Leading up to surgery they go over all the risk, and the things you can lose as a result. My biggest one was the vision in my left eye, but I signed all the paperwork anyway! So knowing I could see was, already, a "win." After that I went through the small things: I knew I could speak, my memory seemed fine, I recognized faces and understood English. I was content, but not quite satisfied. I craved further validation. I need to know that as i lay in that bed I was still "smart" I wanted confirmation that I was still going to become everything that I wanted to be, within the timeframe that I had set. And then my phone rang.
My professor was calling to see how I was feeling, and how surgery had gone. He's a Neurologist so the first thing I told him was how idiotic it was to assume you are testing some's neurological function by asking who the president is every four hours! He chuckled and said "Well you sure sound like yourself!" Hmmm does that mean I complain and bitch a lot in my daily life? Then he said "Would you like me to give a quick Neurological assessment?" Oh good god! I thought. And then he started with his questions: "Taniya, give me the definition of phagocytosis." "In the Renal the outer portion of the kidney is called ____." He pulled questions from things that I'd learned over the past 13-16 months. And every time he said right I jumped on my mental pogo stick and went bouncing off into the sunset! That's exactly what I needed! I didn't leave any of what I, quietly, defined as my intelligence on that operating table.
After 3 days in the hospital, and week at home I went back to school. I was jumping right back into my life. If you want to go back to feeling well you have to go back to doing the things you did when you were well (if you are still able.) My doctor urged me to take off the semester off, but I refused. Last year I gave him an entire semester and the seizures came back anyway. I wasn't giving up anymore time. I settled back into my old routine, quickly.
I had been having dizzy spells on and off since coming home. I found 100 of things I could blame them on: I aven't eaten, it's the medication, I'm overtired etc.
Last week there was no explaining things away. Surgery had felt like it was so long ago, so complications were no longer on my radar. I could see, hear, speak and pass any A&P test in my sleep. I was in the clear. Wasn't I? ... Not quite just yet. The thing about "complications" is they can be anything and happen at any point. I always viewed complications as something that goes wrong during or IMMEDIATELY after surgery. I certainly didn't think they were something that would show up almost a month later, nor was it something I was willing to think about.
Post surgery, my body wasn't absorbing my cerebrospinal fluid as quickly as it was produced. Essentially I was accumulating "water on the Brain." Getting back to the list of risk and complications ... I'm not sure I paid much attention to this one! It got my attention real fast when my surgeon came in and said "I know how to fix this." Note: If a surgeon tell you he knows how to fix something, trust it involves cutting someone open! He said "I'd like to take you to the O.R on Monday, and put in a shunt." I'm sure if I could have sat up I would have yelled something obscene. But I was too dizzy to even be able to sit up. I was disappointed and upset. I saw the one path I was, already, on. The one that had been free from complications and drama, for nearly a month. I didn't want to start over or try again. I just wanted to be seizure free ... and for a month I had been.
Where was this unforeseen turn taking me? I didn't know, but I had no choice but to turn also. My brain was literally drowning in it's own fluid. The world, viewed through my eyes, was constantly spinning. So with shaking hands I chased the signature line around the page, as it continued to spin. I quickly scribbled some version of "Taniya L. Faulk" that may, or may not have resembled my actual signature. And with that I went to surgery. That was almost 2 weeks ago.
This isn't the way I want things to go, but looking back all I ever asked was for them to go wee. Thus far they have. I hated the need for an additional surgery. (sure, I'll eventually add it to my tally and feel even cooler!) However, I had to find a way to be ok with things were going to play out. For me to recover and continue to thrive I had to follow that small bend in the middle of my path.
I spent my first night in the Neuro ICU, blissfully unaware of what my head had just endured. The question people ask, most often, is: Did it hurt? YES. I have high pain tolerance, and try to avoid narcotic pain killers, but that was not possible this time around! Being a "neuro patient" I got the joy of being harassed with a neurological assessment every 4 hours! That basically means some nurse would wake me, from my drug induced slumber, by shining a light in my eyes. They would then ask me any combination of the following questions: : "What's your name?" "What's today's date?" Who's the president? Some questions received some snarky answers. Like: "Even if I did suffer some neurological deficit during surgery I think I would have memorized that Obama is the president based on the last 12 times someone has come in here to ask me, before your shift even started! ICU or not I felt well enough to remain my charming sarcastic self.
By day 2 it was my neurological assessment that I was going through. One of the very first things I established when i opened my eyes was that I could still see ... out of both eye. it sounds strange, and I know that. Leading up to surgery they go over all the risk, and the things you can lose as a result. My biggest one was the vision in my left eye, but I signed all the paperwork anyway! So knowing I could see was, already, a "win." After that I went through the small things: I knew I could speak, my memory seemed fine, I recognized faces and understood English. I was content, but not quite satisfied. I craved further validation. I need to know that as i lay in that bed I was still "smart" I wanted confirmation that I was still going to become everything that I wanted to be, within the timeframe that I had set. And then my phone rang.
My professor was calling to see how I was feeling, and how surgery had gone. He's a Neurologist so the first thing I told him was how idiotic it was to assume you are testing some's neurological function by asking who the president is every four hours! He chuckled and said "Well you sure sound like yourself!" Hmmm does that mean I complain and bitch a lot in my daily life? Then he said "Would you like me to give a quick Neurological assessment?" Oh good god! I thought. And then he started with his questions: "Taniya, give me the definition of phagocytosis." "In the Renal the outer portion of the kidney is called ____." He pulled questions from things that I'd learned over the past 13-16 months. And every time he said right I jumped on my mental pogo stick and went bouncing off into the sunset! That's exactly what I needed! I didn't leave any of what I, quietly, defined as my intelligence on that operating table.
After 3 days in the hospital, and week at home I went back to school. I was jumping right back into my life. If you want to go back to feeling well you have to go back to doing the things you did when you were well (if you are still able.) My doctor urged me to take off the semester off, but I refused. Last year I gave him an entire semester and the seizures came back anyway. I wasn't giving up anymore time. I settled back into my old routine, quickly.
I had been having dizzy spells on and off since coming home. I found 100 of things I could blame them on: I aven't eaten, it's the medication, I'm overtired etc.
Last week there was no explaining things away. Surgery had felt like it was so long ago, so complications were no longer on my radar. I could see, hear, speak and pass any A&P test in my sleep. I was in the clear. Wasn't I? ... Not quite just yet. The thing about "complications" is they can be anything and happen at any point. I always viewed complications as something that goes wrong during or IMMEDIATELY after surgery. I certainly didn't think they were something that would show up almost a month later, nor was it something I was willing to think about.
Post surgery, my body wasn't absorbing my cerebrospinal fluid as quickly as it was produced. Essentially I was accumulating "water on the Brain." Getting back to the list of risk and complications ... I'm not sure I paid much attention to this one! It got my attention real fast when my surgeon came in and said "I know how to fix this." Note: If a surgeon tell you he knows how to fix something, trust it involves cutting someone open! He said "I'd like to take you to the O.R on Monday, and put in a shunt." I'm sure if I could have sat up I would have yelled something obscene. But I was too dizzy to even be able to sit up. I was disappointed and upset. I saw the one path I was, already, on. The one that had been free from complications and drama, for nearly a month. I didn't want to start over or try again. I just wanted to be seizure free ... and for a month I had been.
Where was this unforeseen turn taking me? I didn't know, but I had no choice but to turn also. My brain was literally drowning in it's own fluid. The world, viewed through my eyes, was constantly spinning. So with shaking hands I chased the signature line around the page, as it continued to spin. I quickly scribbled some version of "Taniya L. Faulk" that may, or may not have resembled my actual signature. And with that I went to surgery. That was almost 2 weeks ago.
This isn't the way I want things to go, but looking back all I ever asked was for them to go wee. Thus far they have. I hated the need for an additional surgery. (sure, I'll eventually add it to my tally and feel even cooler!) However, I had to find a way to be ok with things were going to play out. For me to recover and continue to thrive I had to follow that small bend in the middle of my path.
Sunday, February 9, 2014
I don't want to be a muse, and I certainly can't be your "hero."
Since I consented to a second to another Neurosurgery, my life has been a whirlwind: There have been test, request for more test, data collection and data review. The more I'm being taught, in school, the less foreign the language is. I know the law of Neuroplasticity. I understand hyper vs. hypo polarization, and I can interpret parts of my own EEG (not very well but I still got the gist.) There's a certain peace that is lost with gaining of knowledge. I guess that's why the phrase "ignorance is bliss was coined." Because it really is!
The question "why" has been hang off the lips, of just about everyone. Some let it be verbalized, and others just bite their tongue. Yet, I know they all want to know: "You had one failed Epilepsy surgery, why would you try it again?" Because any shot at success is better than no shot at all! I'd rather try and fail, than fail because I didn't try.
The other reason, and the one that is so hard for people to wrap their minds around: I find it so damn interesting! Sure, I'll have another test, but make sure I get a copy of the report. You can put pins in my legs, but I must see the X-rays! I'm my own "laboratory rat." I've become my own muse. I want to create something beautiful, from my experiences. So yes, when the Neurologists and Neurosurgeon all agreed that they got it wrong The scientist in me said: "OK let's get it right." - I know I'll receive the direct benefits, from this surgery. However, this, all will reach far beyond me: When I can hold a patient's hand and say: "I understand" those words will hold truth. Or the day I put a cast on a little girls arms, and whisper: "Sweetie, I know it hurts." I wont be lying.
On the flip side of that, I'm no martyr. Nor, am I a hero. My professor called me his hero, and that was beyond awkward! That man, and his career inspire me everyday! I've accomplished what you expect most women, my age, to have accomplished.Sure the road I've traveled may have had more potholes than most, but I didn't do anything heroic! I just navigated my road well. When I eventually find the solution to world peace, or cure world hunger ... than you can call me your hero. For right now, just call me some relentless chick who became real good at falling down, and jumping right back up!
The question "why" has been hang off the lips, of just about everyone. Some let it be verbalized, and others just bite their tongue. Yet, I know they all want to know: "You had one failed Epilepsy surgery, why would you try it again?" Because any shot at success is better than no shot at all! I'd rather try and fail, than fail because I didn't try.
The other reason, and the one that is so hard for people to wrap their minds around: I find it so damn interesting! Sure, I'll have another test, but make sure I get a copy of the report. You can put pins in my legs, but I must see the X-rays! I'm my own "laboratory rat." I've become my own muse. I want to create something beautiful, from my experiences. So yes, when the Neurologists and Neurosurgeon all agreed that they got it wrong The scientist in me said: "OK let's get it right." - I know I'll receive the direct benefits, from this surgery. However, this, all will reach far beyond me: When I can hold a patient's hand and say: "I understand" those words will hold truth. Or the day I put a cast on a little girls arms, and whisper: "Sweetie, I know it hurts." I wont be lying.
On the flip side of that, I'm no martyr. Nor, am I a hero. My professor called me his hero, and that was beyond awkward! That man, and his career inspire me everyday! I've accomplished what you expect most women, my age, to have accomplished.Sure the road I've traveled may have had more potholes than most, but I didn't do anything heroic! I just navigated my road well. When I eventually find the solution to world peace, or cure world hunger ... than you can call me your hero. For right now, just call me some relentless chick who became real good at falling down, and jumping right back up!
Wednesday, January 15, 2014
Self talk
It's vitally important that we are careful of how we talk to ourselves. The thoughts that we give a voice to become internalized beliefs and perceptions of ones' self. I hear it all too often:
-I'm Broke
-God, I'm so stupid
- I got sot so fat over the holidays
- I'm SICK of this or SICK of that.
-I can't take it anymore.
-This is KILLING me.
This list could stretch for miles. I'm not above any of it. I've found myself indulging in my fair share of negative self talk. We all go through phases where we hate our thighs or get frustrated enough to call ourselves dumb. While that might not be the biggest deal in the world the ideas that can take on physical manifestations are cause for concern.
I remember, in 2004 the man of my dreams decided I was no longer the woman in his. I did all the cliche things you would expect to see in a Jennifer Aniston movie. There was lots of wine, tears, and moody depressing love songs vibrating the walls of my bedroom. There was also me proclaiming how "broken hearted" I was, to anyone who would listen. Boy do I have good friends because not one told me to shut up.
Right before his birthday, in 2005 I ended up on an operating room table having my heart "fixed." Coincidence? Now, I'm not metaphysical enough to believe that I actually talked myself into needing heart surgery. However, I do know that the voice that kept screaming "broken heart" knew nothing of the sort, and all it did was make sure my energy was focused on being depressed. After all I was supposed to feel depressed, wasn't I? That's how the story goes right? That's what my voice believes.
Like that word "suffering" That word is the bane of my existence! I'm a "patient" who has dealt with and fought off most of my medical conditions. But don't ever say that I "suffer" from anything. To suffer implies that you are a victim of. I've never been a victim of anything!
Sure I have "Brittle bone disease" but I didn't "suffer" over 90 fractures. I broke 90 bones and/or recovered from 90 fractures.
I don't "suffer" from epilepsy. I have epilepsy and my seizures are annoying, inconvenient, and right now they are interrupting my life. However, I'm still not suffering.
I can't let that voice start talking to me like that. Because the minute I buy into the theory that I'm some "victim" is the minute that I give up control. (Anyone who knows me knows I'm a control freak!) I control my body, I control my health care, and I control that voice in my head!
It's impossible to turn off that voice, so I say hear it and then ignore it. When you hear something that you don't like you can always turn it down or off. The problem is when you don't actually hear it, you don't realize that it's always on as background noise.
Friday, January 10, 2014
Taniya, when you had the stroke __________?
If I never have to answer a question that starts with "When you had your stoke" that would be too soon.
It was April of 2003. It was my junior year of college, and it was probably the hardest thing that I ever lived through. It was weeks of a psychological minefield. I was dealing with weeks of headaches ... debilitating headaches, which doctors scoffed at. Light was my vicious enemy so I lived in darkness. Just as frequent as my trips to the ER, were the recommendations to see a psychologist. Prescriptions for Prozac were placed in my hands as they patted me on the back and sent me home with "nothing we could find." They made me feel crazy. Until the night of the stroke, and 11 hours of sucking blood off my Brain no doctor believed me.
As I sit here, ten years later all I can think is "Told ya so!" But of all the things I could be right about. I thought the initial recovery would be the hard part. I didn't know I'd still be answering questions about it. Nor did I know how much of my life would later be impacted. Once all was said and done I thought I was in the clear. I didn't know that two years later I'd crash my car into a tree, and be found unconscious, starting a new flurry of misdiagnosis and insanity accusations. I couldn't have known that, that single event was laying the ground for a path that I would have to continue to walk. I would never have believed that I'd let someone open my head 5 more times, and be considering a sixth.
So to answer the question: "Taniya, when you had the stroke ________?" I knew it was something, but didn't know it would be all this.
It was April of 2003. It was my junior year of college, and it was probably the hardest thing that I ever lived through. It was weeks of a psychological minefield. I was dealing with weeks of headaches ... debilitating headaches, which doctors scoffed at. Light was my vicious enemy so I lived in darkness. Just as frequent as my trips to the ER, were the recommendations to see a psychologist. Prescriptions for Prozac were placed in my hands as they patted me on the back and sent me home with "nothing we could find." They made me feel crazy. Until the night of the stroke, and 11 hours of sucking blood off my Brain no doctor believed me.
As I sit here, ten years later all I can think is "Told ya so!" But of all the things I could be right about. I thought the initial recovery would be the hard part. I didn't know I'd still be answering questions about it. Nor did I know how much of my life would later be impacted. Once all was said and done I thought I was in the clear. I didn't know that two years later I'd crash my car into a tree, and be found unconscious, starting a new flurry of misdiagnosis and insanity accusations. I couldn't have known that, that single event was laying the ground for a path that I would have to continue to walk. I would never have believed that I'd let someone open my head 5 more times, and be considering a sixth.
So to answer the question: "Taniya, when you had the stroke ________?" I knew it was something, but didn't know it would be all this.
Sunday, December 29, 2013
What a tease
I never want to be the woman who whines and cries over everything that's wrong. Things don't always go according to plan, and this past year certainly was no exception.
After living over a year of seizure freedom, the came back. The fear I held deep within me materialized. I had one solid year of living without that, ever present, looming thought of: "please don't let me have a seizure." I was stripped of that security in October, during a Chemistry test. (As if I didn't have enough reasons to hate Chemistry!) There was one seizure, which I prayed was only a "one time deal" until the next one came, and then the next. Before I knew it I was right back where I started.
I put my life on pause for four months to have this surgery. I lived this full year thinking that I was "cured." The recurrence of the seizures definitely was disheartening. I almost didn't know which way to turn. I knew that my doctors were the only ones that could help, but part of me felt like I had let them down. It may be my affliction, but we set on this path as a team and it failed ...
I got upset, and "licked my wounds" when I needed to, but I never regretted it. I'd do it all over again if you asked to. In fact, I just might have to ...
There are no definitive answers right now. No one why I'm still having seizures, where they are, now, coming from or if they can be cured. I'm heading back into the O.R. tomorrow for some further testing. Eh, a few electrodes in my Brain for a few weeks ... no big deal! Ok, so it's not quite that simple, but I've undergone a lot more invasive procedures.
I'm not afraid, mad or upset. I'm just annoyed by the uncertainty. I can't live my life in this state of limbo. I don't want to walk on egg shells. I don't want to have to confess to professors "I'm epileptic and stress can trigger me to have a seizure. So don't be alarmed if I start convulsing during midterms!" So if I am "curable" they'll cure me. If I'm not, they'll treat me, and I'll wait for the next scientific breakthrough and see if that helps. But either way I need to know. I need a period at the end of this sentence. The book may need to remain open but we can end the sentence.
Updates to come ...
After living over a year of seizure freedom, the came back. The fear I held deep within me materialized. I had one solid year of living without that, ever present, looming thought of: "please don't let me have a seizure." I was stripped of that security in October, during a Chemistry test. (As if I didn't have enough reasons to hate Chemistry!) There was one seizure, which I prayed was only a "one time deal" until the next one came, and then the next. Before I knew it I was right back where I started.
I put my life on pause for four months to have this surgery. I lived this full year thinking that I was "cured." The recurrence of the seizures definitely was disheartening. I almost didn't know which way to turn. I knew that my doctors were the only ones that could help, but part of me felt like I had let them down. It may be my affliction, but we set on this path as a team and it failed ...
I got upset, and "licked my wounds" when I needed to, but I never regretted it. I'd do it all over again if you asked to. In fact, I just might have to ...
There are no definitive answers right now. No one why I'm still having seizures, where they are, now, coming from or if they can be cured. I'm heading back into the O.R. tomorrow for some further testing. Eh, a few electrodes in my Brain for a few weeks ... no big deal! Ok, so it's not quite that simple, but I've undergone a lot more invasive procedures.
I'm not afraid, mad or upset. I'm just annoyed by the uncertainty. I can't live my life in this state of limbo. I don't want to walk on egg shells. I don't want to have to confess to professors "I'm epileptic and stress can trigger me to have a seizure. So don't be alarmed if I start convulsing during midterms!" So if I am "curable" they'll cure me. If I'm not, they'll treat me, and I'll wait for the next scientific breakthrough and see if that helps. But either way I need to know. I need a period at the end of this sentence. The book may need to remain open but we can end the sentence.
Updates to come ...
Friday, April 26, 2013
Just when I thought maturity prevailed
I'm use to walking through crowds or entering a room filled with people, I don't know, and getting those obvious stares. In most situations I don't even notice anymore. Ironically enough, I think, I was stared at less when I was in a wheelchair. Nonetheless, I'm not effected by it. However, sometimes the people I know and love get angry and offended.
Just the other day I was walking through campus with a friend, and a group of girls passed us. Once they thought I was out of earshot one of them said to the group "Yo, see I told you there was a midget that went here." A chorus of snickers followed. I rolled my eyes and kept walking. My friend, on the other hand, got extremely upset. She was nearly ready to fight.
I'm 32 years old, and to even entertain such stupidity is beneath me. I got through most of middle school and all of high school without dealing with that level of immaturity. The last place I thought I would have such an encounter was a collage campus. That's when I realized it's not about maturity. I don't even think it's about ignorance, anymore. (Turn on TLC any night of the week and I guarantee you will see at lest 3 reality shows staring "little people.")
I may stand alone in this, but I think most of it is misguided curiosity and surprise. While most people are not so "vocal" about it, I'm smart enough to know that's probably the internal dialogue behind many stares. "Yo, I told you there is a midget that went here." translates to something more like: Guys there's a little person that goes here. I wonder why she's little. I wonder how she gets here. I wonder how she does in classes. She's smart enough to take college classes? - And that is where curiosity begins to feel like immaturity. These are questions that should be asked to me. The assumptions and the fabricated answers are ridiculous.
I'm not making excuses for inappropriate behavior. Snickering, and pointing are uncalled for and inexcusable. However, I've been 4' tall since I was about 7. I've spoken to enough schools, answered enough questions, walked through enough crowds and entered enough rooms to know that there's something more than just a bunch of ignorant people in an immature world. That's, truly, why stares don't bother bother me!
And guess what ... I've had moments of curiosity too ...
Tuesday, September 18, 2012
All that's left is a headache ...
Recovery has always seemed to come easy for me. - Sometimes it, almost, seems too easy. They told me that I'd be "recovering" for 6-8 weeks. Yet after 11 days I was up and ready to return to life. I left the hospital 2 days after the surgery was complete. I'm not easily held down. All that's left is a headache that is controlled with Tylenol.
I've jumped across so many operating tables, that I lost count. Most of my surgeries were considered "elective." If you were to ask me I would have to agree. - Elective yet imperative. I always saw hope at the end of a scalpel. There was always the promise that I could walk. Then came the hope that my heart would function more efficiently, and now the hope that I will spend the rest of my life seizure free.
For me hope and blind faith are synonymous. Yet my family sees it more as insanity!
I did wake up with a terrible haircut! There aren't even words to describe what it looked like. It was clearly apparent that he's a Neurosurgeon and not a hair dresser!!! Until I could get it fully shaved I walked around with this quite interesting "Jekyl and Hyde-esq" do. I didn't try to cover it. At the worst I'd get stared at (like that's never happened before) at best I'd inspire the newest rock star hair trend. Let's just say the later didn't happen! I would have dared anyone to say anything about my hair. I earned it, so I owned it! - I'm happy to report that I am rocking a more sensible hair do, now that I shaved it!
I'm not immune to being self-conscious. -Sure I want my hair back. I wasn't 100% comfortable sitting in McDonalds with my butchered hair and an exposed scar, that runs straight across my head. But I also wasn't willing to lock myself in my house. I know that less than 3 weeks ago my hair was the least of what was at stake....
The hair will grow back, and scar wont remain exposed. But that scar will be another paragraph in the story of me. And I honestly love that.
I've jumped across so many operating tables, that I lost count. Most of my surgeries were considered "elective." If you were to ask me I would have to agree. - Elective yet imperative. I always saw hope at the end of a scalpel. There was always the promise that I could walk. Then came the hope that my heart would function more efficiently, and now the hope that I will spend the rest of my life seizure free.
For me hope and blind faith are synonymous. Yet my family sees it more as insanity!
I did wake up with a terrible haircut! There aren't even words to describe what it looked like. It was clearly apparent that he's a Neurosurgeon and not a hair dresser!!! Until I could get it fully shaved I walked around with this quite interesting "Jekyl and Hyde-esq" do. I didn't try to cover it. At the worst I'd get stared at (like that's never happened before) at best I'd inspire the newest rock star hair trend. Let's just say the later didn't happen! I would have dared anyone to say anything about my hair. I earned it, so I owned it! - I'm happy to report that I am rocking a more sensible hair do, now that I shaved it!
I'm not immune to being self-conscious. -Sure I want my hair back. I wasn't 100% comfortable sitting in McDonalds with my butchered hair and an exposed scar, that runs straight across my head. But I also wasn't willing to lock myself in my house. I know that less than 3 weeks ago my hair was the least of what was at stake....
The hair will grow back, and scar wont remain exposed. But that scar will be another paragraph in the story of me. And I honestly love that.
Saturday, August 25, 2012
Packing ...
As I take a break from packing I can't help but wonder why I'm not nervous. I feel like everything in me should be in knots: Like I should be a huge ball of fear and anxiety. Yet, the only emotion I feel is "excitement." . I want to be on the other side of this, so badly. I've actually waited, this past week, like a kid waits for Christmas. Doesn't that sound weird?
People keep asking me: "are you scared?" With all honesty I can say no. There's a sense of calm, that feels so unnatural. Maybe it's people's reactions that make my feelings seem so unnatural - I remind myself that I've done this before. I woke up in a bed and learned that someone had successfully "tinkered" around in my head. Maybe had that not been part of my past, I would been terrified.
Is terrified even an emotion? It's an amplification of fear. Fear and terrified are not mutually exclusive. Of course I have fears ...
I fear this wont work...
I fear that I'll wake up a year from in the middle of a seizure...
I fear that all the work, obstacles, annoyances, and blind faith will bring me nowhere...
I fear that all those who questioned my choices, and didn't "back" me will be right...
There is something I am terrified of .......
Hearing: "I told you so!"
Back to packing -
People keep asking me: "are you scared?" With all honesty I can say no. There's a sense of calm, that feels so unnatural. Maybe it's people's reactions that make my feelings seem so unnatural - I remind myself that I've done this before. I woke up in a bed and learned that someone had successfully "tinkered" around in my head. Maybe had that not been part of my past, I would been terrified.
Is terrified even an emotion? It's an amplification of fear. Fear and terrified are not mutually exclusive. Of course I have fears ...
I fear this wont work...
I fear that I'll wake up a year from in the middle of a seizure...
I fear that all the work, obstacles, annoyances, and blind faith will bring me nowhere...
I fear that all those who questioned my choices, and didn't "back" me will be right...
There is something I am terrified of .......
Hearing: "I told you so!"
Back to packing -
Saturday, June 30, 2012
7/21 = 7/4
I was born three weeks after independence day, and I find that so fitting. I feel like I'm always emphasizing how independent I am, and how hard I had to work to get there. I don't do it to be one of the obnoxious people "showing off." I don't want to be the the poster child for "look what I can do!!"
I Seriously don't think people care, nor do I want them to, that I can: drive (anyone over the age of 16 can do that.) cook my own meals, graduate college, work and all the countless mundane things that amaze people. I never understand when I get that collective gasp, when I tell my kids any of those things.
I'm human: I falter, I fall, I crack, I bleed and I cry. It's in those moments that I need reminding of the road I've traveled, and all the speed bumps I went over at full speed. Many of which, were to my detriment. ( It's not easy to tell your mother you just broke your ankle rollerblading, when you both know you can't walk!) I've broken bones, I've crashed cars, I chased away the love of my life, by clinging so tightly, believing he was the ONLY one who see me. I've fallen down stairs, I've had seizures in public, I've failed test, I've lost jobs, I've burned rice (ok that really doesn't fit in this list, but it happened.) Yet, I navigated all that. I got to the other side with a few breaks, bruises and tears. But I got there.
When people ask me what scares me about this surgery. the answer is simple: it's losing all of the hard work I've invested in my life ... permanently, or temporally. I know all the risks, and understand all the medical jargon. However, in layman's terms I know what I'm surrendering, and what I could lose. I'm jumping in head first with the blind faith that on the other side of this speed bump ahead is just another bruise. (a bruise and a little less hair.)
I'm giving up, most of my independence for a year. I'm leaving school for the fall semester. I wont be allowed to drive for a year. That's my freedom, on four wheels. As if it's not bad enough that I live with my father ... The idea of confinement is already giving me anxiety. I wont be allowed to use my step stool, for fear that I'll have a seizure, fall and hit my head. I break both those rules now, but once my dad sees it in print he'll be a speed bump that I'll have to take a sledge hammer to.
The idea of ASKING someone for HELP will nearly break me. Asking someone to take me to Starbucks, waiting for someone to make me food, or wash my clothes. I'm 32 ... the needy, helpless phase of my life is 12 years behind me!!
I'm willingly saying: OK I don't mind being dependent. I don't mind putting my social life on hold. School can be pushed aside for a year. I'm ok being imprisoned in a house (oh, how Ashley and I will end up fighting!!) Essentially, I'm putting my life on hold ...
I've lived this long breaking rules, pushing limits, doing things people said I couldn't, shouldn't or wouldn't ... I'm not so sure this will be any different... The help wanted sign on my forehead will probably only be there until Christmas - If I let it stay that long!
I Seriously don't think people care, nor do I want them to, that I can: drive (anyone over the age of 16 can do that.) cook my own meals, graduate college, work and all the countless mundane things that amaze people. I never understand when I get that collective gasp, when I tell my kids any of those things.
I'm human: I falter, I fall, I crack, I bleed and I cry. It's in those moments that I need reminding of the road I've traveled, and all the speed bumps I went over at full speed. Many of which, were to my detriment. ( It's not easy to tell your mother you just broke your ankle rollerblading, when you both know you can't walk!) I've broken bones, I've crashed cars, I chased away the love of my life, by clinging so tightly, believing he was the ONLY one who see me. I've fallen down stairs, I've had seizures in public, I've failed test, I've lost jobs, I've burned rice (ok that really doesn't fit in this list, but it happened.) Yet, I navigated all that. I got to the other side with a few breaks, bruises and tears. But I got there.
When people ask me what scares me about this surgery. the answer is simple: it's losing all of the hard work I've invested in my life ... permanently, or temporally. I know all the risks, and understand all the medical jargon. However, in layman's terms I know what I'm surrendering, and what I could lose. I'm jumping in head first with the blind faith that on the other side of this speed bump ahead is just another bruise. (a bruise and a little less hair.)
I'm giving up, most of my independence for a year. I'm leaving school for the fall semester. I wont be allowed to drive for a year. That's my freedom, on four wheels. As if it's not bad enough that I live with my father ... The idea of confinement is already giving me anxiety. I wont be allowed to use my step stool, for fear that I'll have a seizure, fall and hit my head. I break both those rules now, but once my dad sees it in print he'll be a speed bump that I'll have to take a sledge hammer to.
The idea of ASKING someone for HELP will nearly break me. Asking someone to take me to Starbucks, waiting for someone to make me food, or wash my clothes. I'm 32 ... the needy, helpless phase of my life is 12 years behind me!!
I'm willingly saying: OK I don't mind being dependent. I don't mind putting my social life on hold. School can be pushed aside for a year. I'm ok being imprisoned in a house (oh, how Ashley and I will end up fighting!!) Essentially, I'm putting my life on hold ...
I've lived this long breaking rules, pushing limits, doing things people said I couldn't, shouldn't or wouldn't ... I'm not so sure this will be any different... The help wanted sign on my forehead will probably only be there until Christmas - If I let it stay that long!
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