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Sunday, December 20, 2015

Daring Greatly and Being Good Enough



Recently, I have been feverishly reading, watching, and listening to anything by and with the writer/researcher, Brene Brown. If you are not familiar with her, or her work, a simple Youtube search into vulnerability or shame will lead you to her TEDtalks or appearances on Oprah. She famously dedicated ten years of research to the mechanics of shame, and subsequently, vulnerability.
Her works have led me to a few discoveries of my own. For one thing, I envied her opportunity and interest to study shame. I know, weird, right? But, as someone living with autoimmune diseases that affect every area of my life, and valid experiences in shame as a teenager, (don’t we all have those??) I would rather study empathy than shame. Empathy is a mindful state of being, one where you must certainly be vulnerable. I often reflect on how the illnesses have made me more empathetic, and want to share my experiences with others.
Lately, though, I have been letting my experiences, emotions, and thoughts pile up inside that ‘shadow self,’- what some Shamans call our ‘closet.’ You know, that place in the back of your mind that neatly conceals all the regrets, shame, and heartache that we either choose not to deal with, or have the ability to do so. In this space, as Brown says, I am not engaging, not ‘daring greatly.’ It is often said that writers are forever straddling between wanting to be seen and wanting to stay hidden. This describes me perfectly.
Perhaps it feels easier to hide. That way, you can still try, still succeed or fail, without the shame, embarrassment, or anger you might feel having tried AND let yourself be seen doing so.
For me, I think, trying and the fear and/or shame of potentially failing in front of others was an early learned condition, one that I had not even been aware of, until college. For once, I was surrounded by others that shared the same passion for not only teaching, but changing the landscape of Early Childhood Development. We felt the passion and concern our current childcare system from our amazing professor, Beth. We wanted to not only influence and educate, but learn and grow as the best versions of ourselves. Well, not all of us. In the beginning, I thought it would be adequate to just be a younger version of Beth. I wasn’t aware, or even believed that I would be ‘enough’ to make any sort of difference.
    For me, it was a lazy choice to enroll in Early Childhood Development. My only interest upon leaving high school was two-fold: getting far enough away from those that I let drive me to feeling shameful about every aspect of my life, and attending classes for and about dance. Unfortunately, (or fortunately, depending on how you look at it) my family’s funds and my dad’s control of my decisions only let me go as far as the local community college. I think both of my parents feared an alcohol-fueled, boy- crazy me, let loose on a college dormitory. I would surmise that is a fair point, however, I was itching to leave the small town mentality, and my parent’s control behind. My dad proposed (*demanded*) that I take introductory courses at the community college, then shift to the local university. Fair enough.
I reluctantly signed up for the intro courses, as well as some others, to fill my requirements with my dad. I only signed up for an Early Childhood course because it had been my mom’s interest, and where she obtained her degree years earlier. I actually had no real interest. I was pleased that the only person in any of my courses that knew me was my sister. So, finally, here was a place where I could feel comfortable to make mistakes, delve into what I had real interests in, and express myself in a way I had been conditioned to be afraid of for so long.
I still wasn’t so comfortable being seen, another conditioned response. My new blonde locks forced that feeling to the forefront. It’s comical, now that I reflect on it, that a new hair color changed my perception of myself so much. But, it did. The way I felt about it, my hair, make-up and fashion choices were a carefully crafted suit of armor that I could hide behind, however confident they made me seem. In any case, it was my first course in Early Childhood Development, and all those that followed, that allowed me to feel more comfortable being seen and being myself, however she manifested.
    I will never forget that first course with Beth. It was actually a second year ECE course, but it was the only course that coincided with my sister’s Criminal Justice courses.  In the first few minutes, I developed a chest-pounding panic that could be compared to those nightmares of being both unprepared AND half-naked in class. I wasn’t, thankfully, but I was out of my depth. Clearly, this was an advanced ECE course, and one that brought out more fears that I was prepared for that day. I suddenly thought of dropping the course, because how could I ever be what this professor deemed as a ‘good’ educator. She spoke of traits such as ‘authoritative,‘ ‘mindful’, and ‘flexible’, none of which I could then identify with. I was raised under ridged-authoritarian and passive parents,  and surmised that I would be that way, as well. So shaken by this thought, I shared it with Beth, the ECE professor, after class.
  “Hi, um, this is my first course in ECE. You taught my mom, Lynn, a few years ago…” I stammered.
  “Yes, of course! How is she? What can I do for you?” she politely asked, while a small group of students surrounded her.
“Um, well, I don’t know if you remember anything she shared about my dad, but he is and raised us in a very authoritarian environment, and, well, I don’t think I can be an authoritative educator. And, I just don’t want to screw any of the kids up…” I held my breath, fear of the unknown swelling  up inside. She was surely going to encourage me to drop the course, I thought.  Instead, she shifted all her focus on me, mindful of my needs and feelings as a student (Just as an effective educator should be), and kindly smiled.
“I see that you care, and I'm glad that you do. Apply yourself to the ECE courses, you will learn how to be an authoritative and effective teacher,” she said. Possibly sensing my panic, she added, “Just try it for a few weeks, and then, if you feel it is not something you will be able to do, drop the course. But, I think you will be just fine.”

She was right. In the coming weeks and months, I slowly crept out of my shell, and my comfort zone as a faceless, hidden student. I found that I took to the ECE courses like I once took to dance class. At first, scared and excited, and generally just happy to be there. Then, eager to learn new lessons, eager to expand my thought process. Eventually still, eager to express and share my thoughts, to share what I learned with the entire ECE class. I was no longer comfortable hiding in the background. I quickly became as familiar and friendly to Beth as her graduate students,  both for my participation and enthusiasm in class. So much so, that when the health complications forced me to miss classes, she told me how much I was needed and missed.
  “How are you feeling today?” she asked when I returned. “Class was so quiet on Thursday, without you,” she sighed, “I wished you were there!”
No teacher had ever said that to me, I thought. I had been seen. I had been appreciated. I had been valued. I can never fully express my heartfelt gratitude to Beth for that; for making me feel as if I was special. I mattered. Up to that point, that was a feeling caused only by a certain few in my life. (My first crush and my second dance teacher, are the first that come to mind.) But, it was a state of being that let me soar above and away from the inadequate, shame- filled thoughts of my past. Misplaced, misguided, wrongfully acquired shame, but shame nonetheless. It allowed me to be more comfortable being truly seen. I developed a thirst for learning, one of the key traits of an effective educator. Actually, in that first year, I wasn’t entirely sure I could be anything other that a close replica of Beth in a ECE setting, and I frequently said as much in our detailed exams. But she would always write in, ?? The best teacher you can be is Y-O-U!!
      Like hell,’ I thought. But, like most things, she was completely right!
It was in my second year of ECE courses, when we started to focus on our individual skills and fields of interest, that I began accepting my strengths and feeling more confident in the lessons I had learned. So, of course it was her that led me to studying and working within the Special Education field. I can’t recall her exact words on the matter, just that she said it took a certain qualities to work with children with special needs, qualities she said I possessed. Again, a moment when she saw me for who I was. Though I cannot recall the conversation that took place, I can recall the pride I felt.
Before those moments in ECE, I had wrestled with feelings of not being good enough: Not good enough for that guy(s), that group of friends (or ‘frienemies,’ as the case was), that class, that outfit, that bathing suit, and often, my family. But, here, in a class I ’accidentally’ fell into, I finally felt the freedom of being good enough for something.

And that was good enough for me.

 -This post is dedicated to two of my favorite teachers, Beth Hoden and Aunt Elizabeth. I know you expected a lot out of me. I hope I always rise to your expectations as a empathetic person, writer, and storyteller. I will carry your lessons as I grow. xo

Wednesday, January 7, 2015

The Struggles of Endometriosis and Chronic Pain (as Explained With Buffy GIFS)


I'm here to walk you through the life of person living with chronic pain and/or autoimmune issues. I will warn you I am feeling a little angry and sad today. 

You've been warned. 

About three weeks ago, I had an appointment with a new pain specialist. It's safe to say I've been struggling with health issues longer than he had been practicing medicine. Regardless, I tried to be open minded with the new guy, and not let my mind think the worst. 

The past fifteen years, I've encountered many a doctor, family and extended family members, and friends that had a limited view on what it means to be in chronic pain and have autoimmune conditions. 

Surgeons and specialists can be a particularly tricky bunch, when they don't have experience dealing with your ailments, surgeries, and pain. I've internalized a lot of the hurtful comments and opinions all these years, and tend to surface when meeting a new doctor, or someone is asking a whole lot of questions.Now that I'm aware this, however, I remind myself, "This person is just coming from their point of view, experiences, health, cultural and societal beliefs, and is not meaning to be hurtful. Check yourself."  

Lately, (and especially this last year) it has been very stressful, and I have been taking more to heart than I need to. WHICH IS NONE. 

Most of the time, when they are coming from ignorance, and a general lack of understanding, I can be like:


and let the person share their opinion on, say, Fibromyalgia or Chronic Fatigue Syndrome (both which I was diagnosed with). 

It doesn't help to get all heated, when faced with someone that doesn't understand what you and your body is going through. I think more than anything, I look for empathy in a doctor/friend/significant other. Honesty is number two. 


When a doctor/friend/idiot says things like, "I've never heard of period cramps being so bad. Maybe you just have a really low pain tolerance." 


And it's particularly annoying when a MALE doctor tells me just to ignore the mind-numbing, fetal position, every*part*of*my*body*hurts*SO*DONT*TOUCH*ME-type cramps,while advising to just get pregnant, then it will stop. 

Oh, but the particular doctor didn't discuss it with me. Only with my ex-boyfriend. While I sat at the same table. 


No, really. 

Besides that pregnancy is NOT a cure for Stage IV Endometriosis, it is and should be MY decision whether to even try or not. I am the one dealing with the pain, yes? 
Okay. 
Also, I am a person, not a 50's fictional Stepford wife. 
Please acknowledge me. 

To his credit, though, my ex was upset and fully supported my choices regarding my health. He knew it wouldn't improve my symptoms, nor 'cure' endometriosis. 



It can be a really frustrating thing; that basically you have to educate these doctors stuck in the 1960's, friends, family, or partners that don't understand why you suddenly cancel plans,  or leave early. 


*OR*

People can be particularly hurtful and clueless, saying how much better they would handle it than I. ''Just ignore the pain, it's that simple," they say. 

"There's no way it could have lasted this long."

"Wait, didn't you have that hysterectomy??" (said with disbelief/anger/confusion) "I don't understand why you still are having pain!!"

"Don't you want to have a family, and kids? I had (symptoms X), and I just ate better, and it went away."





Because I certainly DID NOT. 

No way did I choose this. I had lots of things planned. 

Since she said it, it can get very lonely when you are literally too tired and in too much pain to get dressed. 
Or you do, and are in too much pain after to ride/drive in the car. 
Or too tired or the spasms are too intense to even carry on a conversation. 
I can be lonely when you are in a room full of family, and you are in too much pain to speak, and you just manage a half smile. 


"Everybody gets tired; maybe you're just not trying hard enough."


That's not really how it works, but thanks for weighing in. 



Some have a complete wall; a lack of empathy to someone who struggles day to day with sometimes crippling pain. 
It's especially disparaging when it is your Doogie Howser doctor. 

Sigh.



I admit sometimes I let their ignorance linger in the back of my head. The comments of me just being 'lazy', or I can't be in as much pain as I say, and still function.

If  I could just work harder to forget it, and work through it, etc. Many times I can keep the attitude that their experiences, beliefs, faith, family, etc stops them from fully understanding my situation. 

Inside, I am:

Especially, when I'm already having a high pain day.


And here you might be like:

Well, let me tell you. 

If you know and love someone suffering with any of the issues I do, or the myriad of other chronic ailments, education is the key. 
Compassion. Understanding. Offer to help around the house/with the kids/shopping. 

OH, GOD THE SHOPPING. 
Please do all the shopping, and I will pay you. 

Send a text, or pick up the phone for a few minutes. 

Let us know you didn't forget about us. That just because we missed the last two dinners, doesn't mean you love us any less. 

Above all: For me, anyway, all I want is for someone to actually listen. 
Even if you don't have a solution. Even if you cannot fathom how I feel. 



In fact, the most helpful for me is when someone says, 

"I'm really sorry you are having such a bad flare. I'm hear to listen, and hold your hand, if you wish.     
I'm here for you."




















Sunday, August 3, 2014

Endometriosis and The #ENDENDOMARCH 2015



I registered for the EndEndoMarch2015 in Washington D.C today, and though it seems like something I cannot physically handle, I am telling myself, indeed, I will be able to when the time comes. I will march for myself, and those that can't. I will march for the children I wasn't able to carry in my womb. I will march for my future children, that they will not see a sick mother, not able to play or take care of them. I will march for the seventeen years of missed or incorrect diagnoses, and missed opportunities. I will march for every woman that has to have a hysterectomy at 28, like I did. 
I will march for my college years cut short; for the teaching job I had to leave. 

I will march for everything endo took from me. 

I will march for my mom, who worked her tail off with Endometriosis growing inside; three jobs, including taking care of three growing girls. 

I have been trying to find the words to explain my frustration with this disease and those that deny how entirely heartbreaking it is. Because of the way I was raised, (by a Vietnam Veteran. A Marine, no less), I have a tendency to hide the pain I feel. I know a lot of chronic pain sufferers do the same. 

Please say that you will just listen. That is all we really need. Let me cry. 





There is struggle with it, that effects the WHOLE body, not just reproductive organs. 

Extremely painful. Yet I have those that doubt me, and my strength. You have no idea. 


It is. If it isn't the cramps, it is body pain. It is the fight to get your physical strength back that the cramps depleted. It is the lack of sleep, trying to function while in a pain fog. It is the pain of losing friends and partners that do not understand or support our diagnosis. 


This was one of my favorite lines from one of my favorite episodes of Buffy. You cannot get stuck in the pain cycle, instead we must find hope and LIVE. Find answers. Find support and reach out when you are feeling alone, scared, frustrated, at your wits end. It is in this way that we will heal ourselves and others.  
Call me selfish, but I am marching for me. For all that I have been through the last sixteen years. 
For the doctors that want to help. I want to find a cure, a cause of this disease. I don't want anyone else dismissed, or made to feel less than. I don't want any other woman to feel the crushing loneliness I did, or still do. I don't want anyone else forced into choosing to conceive or have a total hysterectomy, like either will be the cure. THERE IS NO CURE. 
Please show your support. 
If you cannot make it to the march, consider wearing yellow for your endosister, your friend, mother, sister, or woman you never met. Consider wearing yellow for us. 


More info here : Why We March









Friday, June 27, 2014

Of Labels And Identity

Of labels and identity
   'I am' is a powerful statement. 'I am'/'you are' can explain and label a variety of things, including emotions, vocations, lineage and culture, ailments, etc. But, simply saying “I am’ without the need of anything else taps into your true self, the Divine soul expressed inside. Because all those things describe your physical body, and often limit you as a infinitely beautiful soul.

These labels often get confused with our sense of self, of restrict us from learning about our potential entirely. 
    
 Also, consider the labels others use to describe you.. Do you come to accept them as part of yourself, without really examining them, or even realizing that they are just that person’s limited point of view, as dictated by their life’s experiences, beliefs, upbringing, etc? 

What happens when you are no longer what you've come to identify with? Do you experience the crisis of identity? Is it possible for you to move on from that and grow into your being, or do you hopelessly hold onto that label. Causing yourself stress and anxiety? 

Here, I express the labels I've heard about myself, or those that I've given myself for years, the stories attached to them, and those that hindered my growth. 

When we strip away all of these words, we are bare and  more vulnerable. It can be scary, but also liberating. And When we remove the labels we give others, we are forced to really ’see’ them just as they are.  Without preconceived notions, judgments, boxes, or labels. 

                      Open your eyes. See with your heart.



I am/not
  
( Not to be confused with ‘‘Is/not”, written by the brilliant Margaret Atwood )

I am
Water of the streams
Particle of the stars
Breath of the Divine
Roots in the Earth
Fire in my belly
                         I am

I am not:
Lazy, broken, or incomplete
I am not half of a whole
A doormat, 


Without purpose or drive or focus

I am:
 woven in the blanket of my ancestors
Your ancestors
A fine thread indeed
connected in this great web of life
A living expression of the Goddess and God
   I am


I am not:
Too Sensitive
Unworthy of respect or care or kindness 
Nor am I a sinner, or savior, nor needing saved
I will not go elsewhere to ‘find myself’
I am not lost
  I am right here

                     I am

I am the morning dew
The willow leaves
The evening fog
The comfort of the campfire
Breath of  Gaia

            I AM
     
I am
shining stardust
         I am
More than you percieve
I am
a river of emotion
I am
the dance of the Divine

                
                 I am






Monday, February 24, 2014

Backwards thoughts, Future Tense

I've been doing things a little backwards. Instead of writing my thoughts, and getting them out of my head, I've been letting them sit and stew. Or, I just ignore them completely. I know better. I'm not going to experience any healing, or work through anything without the process. I lost two of the most important people in my life last May. My grandparents both passed, and I was in shock for a long time. It isn't like me to ignore my emotions, or not to work through things; being someone with chronic health issues, I rarely have the choice. Holding things in equals pain. For me, it manifests with migraines or fibro flares. More than usual. I do so much to improve my health, but my mental health is just as crucial. So, expect me here more often, spilling my thoughts into the internet. As if there isn't enough people doing that.

Wednesday, October 9, 2013

All of my Loves

I go to Polyvore and Pinterest on low spoon days.(see bottom if you do not know what I am referring to) This way I can still be creative, and share ideas with others. On Polyvore, I like to create sets I would actually wear in real life. There's no heels in my current life; pants and bottoms tend to be loose fitting. Case in point, the harem pants. They don't put pressure on my abdomen and hips, which is great! Comfort is key, so maxi skirts, hoodies, etc. I have worn sarees on special occasions, so that's totally justified in my collections. I am extremely passionate about dance. I began learning around five yrs of age, and never wanted to stop, even when my parents couldn't afford lessons anymore. One of my biggest heartbreaks when I started getting sick was not being able to dance anymore. Endometriosis and Interstitial Cystitis took over my body and life; It took years before I started to dance again. It is the fire in me. Whether others think I am talented or any good, it really doesn't matter. I honestly feel the spirit move through me. A connection to all things. I am determined to learn Kathak and Bharatnatyam, two of the eight classical dances in India. (represented by the gungroo (dancing bells) and statue of Nataraja) Hailing from the North and South, respectively. More about my love of India another day! My desire for travel and adventure is represented by the photo of the open road. So many places on my bucket list! How would you define me, with just the images below? It all boils down to living with an open heart and mind for me. By the way, If it looks like I cannot separate my paragraphs, it's because my blog hates me today. No, really. Maybe it's the link from Polyvore?? Who knows.
All my Loves


"Spoons as illustrated in the Spoon theory http://www.butyoudontlooksick.com/wpress/articles/written-by-christine/the-spoon-theory/ This literally changed my life

Monday, July 29, 2013

In Case You Missed it...

In case anyone missed it...

If you're not familiar with the work of Ms.Jenna, she happens to cuss now and again. But, the message remains very powerful. I completely agree, even if I have trouble being my authentic self. I recognize that it's a process, and am not exactly at the point of awesomeness that Ms. Marbles. And that's ok. BUT, I am further along, and that much closer to finding the real me.
Surprisingly enough, it was going through the extremely difficult times at the onset of  illnesses that I had the most growth. I started to see the friends who only appreciated my skinny, blonde, healthy, party-girl persona, and the ones who could care less if I was in sweats.  Even the family members who were using me for their own selfish ends; the ones I was no longer able to do favors for. 
It has been a very painful (in more ways than one) decade. Following almost as equally painful teen years. However, it was not in vain. I am proud of me for still standing. Or hunching over in pain. Whatever. 
She makes a brilliant point about it being lonely being yourself and not listening to others. I know for a fact that I am unique, just as you are, but if I had stayed with a particular group of friends, I would not be the super-amazing chic I am today. Or follow my passions and dreams. For instance, I can't count the times others have made fun of me for wearing mehndi or bindis , listening to Hindi music, having purple hair, etc. Someone will always have an issue with something you do. There will be someone that doesn't understand. I am not harming anyone. I do not use aspects of other cultures for my own gain or because I think it's "cool" or "trendy." On the contrary, I tend to gravitate toward things that is against the grain. Especially for my b.f.e town.  
She also brought up a another good point. Being your complete self assures you that the people that do love and care for you, love the real you! It comforts me to know the people I surround myself with, and actually let see glimpses of the real me, really love me for who I am.