Flight of Joy

Lessons on Being Feminine

Sun, 03 Mar 2013 20:25:43 -0500

Lessons on Being Feminine
We now approach the end of February, and the end of Turner Syndrome Awareness Month (I was diagnosed with TS at four months old). TS is a chromosomal abnormality that occurs in 1 out of 2000 females when part of the X chromosome is either fully or partially deleted. It can cause short stature (growth hormone deficiency), heart complications, hearing loss, ovarian failure, learning disorders, among others. Because of infertility, and that 95% of those with TS don’t develop spontaneously (the have to take hormone replacement therapy for this to happen), most with TS have issues with not feeling feminine. Now I humbly offer this poem to those who read it. For more information on TS, visit http://turnersyndrome.org/learn-about-ts/what-ts.

It’s not
how curved my figure or breasts,
but how to carry the truths of my flesh,
clay of life
marked from surgical scars,
slightly disproportionate,
the beauty of a hair out of place from its ‘do.

It’s not
when or how my transformation occurred
from childhood dolls to womanhood bras,
but that fingerprints of an essence are within.

It’s not
about giving birth,
but the maternal instinct,
like the ocean waters,
what it means to be a
coat to the coatless,
and a flashlight to those lost in the dark.

That is a woman,
feminine.

My Not-So-Short TS Story (Bio)

Fri, 16 Nov 2012 08:17:56 -0500

I was born a month early, with puffy hands and feet as well as a hole in my heart. My mom had a feeling, call it intuition, that there was something more going on with me. She brought up her worries to my pediatrician, and asked them to order a karyotype. A mother’s intuition is always right. I was diagnosed with Turner Syndrome at the age of four months. I will always be thankful to her for this early diagnosis. Her instincts were due to the fact that she was majoring in Genetics in college before switching to Dietetics. I don’t think that I would have been diagnosed this early if it were not for that.

When I was about a year old I had open heart surgery to mend a hole in my heart. Because of this, I didn’t learn how to walk until I was two years old. I started taking growth hormone injections when I was two as well, and stopped taking them when I was 14. When I was three years old my parents divorced. I was too young to remember anything about it. My understanding is that my mom divorced my dad because he stopped taking his medication for his Bipolar Disorder. This led to him being violent and controlling toward both my mom and I (I actually started saying curse words because I picked it up from him, according to my mom). Till this day the relationship between my dad and I has been rocky, for reasons I will not say here due to privacy. I have learned to let the hurtful things that he has said and done not bother me, because life is too precious to spend dwelling on them. I also try to remember the things that he has done for me that made me joyful. I keep in mind that every human being has the right to be treated with respect, no matter what their fault or burden may be. These are the reasons why I still keep in contact with him. Though this does not mean that I am not strong and stand up to him when needed. Otherwise he will not know what I expect of him.

I went to a performing arts school from grades 4-12. In order to get in to the school, you had to audition for every type of arts concentration (music, art, dance, drama, creative writing). As fate would have it, the only audition I passed was for Instrumental Music. So I played horn in the school’s beginner band for about a year, and then switched to flute because having braces made horn very difficult to play. Now my flute is my baby. I can not say in words how wonderful playing my flute is. This was the beginning of my love and fascination for music, as well as an appreciation for the arts. To this day I dabble in composing music and write poetry when possible. Self expression, I believe, is like medicine for the human psyche. When I was eleven or so I had a stent put in to my aorta because it was constricted. I was one of the first five to have this procedure done at the medical center I went to (and still go to today). I had gained so much energy after that! When I was five I used to play soccer, but because of my heart issues I only had the energy to last a quarter. After the stent I could run without becoming out of breath! It was also around the same time I was diagnosed with scoliosis. It was a mild lumbar curve (about twenty-five degrees). My orthopedist at the time put me in a back brace for years, but the curve slowly kept on getting worse and worse. At this point the curvature was sixty-two degrees. My mom and I got a second opinion, who happened to be recommended by a speaker at a TSSUS convention. I was sixteen when we saw him, and that summer I had back surgery to correct the curvature. Now I don’t have the back pain I had before. When I was twelve years old a lot of things happened. That year I finally got hearing aids after my audiologist recommended me to wear them. My parents and I always knew I had mild to moderate hearing loss, but the audiologist I had then said that I didn’t need hearing aids. My mom also became concerned with the discrepancy in my grades. There was a gap between my not-so-good math grades and the rest of my grades, which were pretty decent. After having a neuropsychological evaluation, I was diagnosed with Nonverbal Learning Disorder (NLD). I can say that being involved in music helped me get through the barriers of NLD. I learned how to adapt in social situations by being in a large group (band), playing a musical instrument helped with my visual-spatial difficulties, and performing music is one of the few activities that stimulate both sides of the brain. After graduating from high school (top 25% of the class), I knew I wanted to continue being involved in music in some way, whether it was my career or not. Music will always be a part of my life.

In high school, I had an eye exam. My mom wanted me to get one to make sure everything was OK before sending me off to college. It turned out that I had mild astigmatism and needed glasses. My college years had it ups and downs. When I first started I wasn’t exactly sure what I wanted to major in. I was debating between majoring in Biology, English, Education, or Music. Every Freshman had to take a Freshman Seminar class the first semester of their Freshman year, and they get to choose their top three selections of what they want to take from a list of classes. My Freshman Seminar class ended up being a World Music class called East Meets West in Art Music. So, fate again? I enjoyed the class and the professor very much, so I started to think about majoring in Music. At this point my English professor for my Freshman English class told me that I should think about being an English major. I contemplated both majors, flipping between the pros and cons of each one in my mind. In the end, after playing in the Flute Choir and Symphonic Band, I knew that Music is the area that I wanted to major in. It fit. I also love children, always have and always will. So I decided to major in Music Education. Well, unfortunately I wasn’t able to do that because of time and money. Because I declared my major late (end of first semester Sophomore year) it would have taken me six years to complete the degree. My parents did not have the money for that. So I switched to getting a B.A. in Music. After five years I was able to graduate with the degree with a somewhat decent GPA. My next goal is to go to get a Masters in Music Education (Music Therapy is my fall-back degree in case Music Education doesn’t work out). Another consideration would be getting a teaching lisence.

One thing that is a struggle for me right now is having children. I am one of the few TS women out there who had spontaneous puberty. My endocrinologist at the time didn’t believe I was developing, and that my breast buds were just “fatty lumps”. Because I developed naturally, I thought in back of my mind that I COULD have a child on my own. I could physically. But I also knew the risks, especially with my preexisting heart condition. However, I recently was told that I have the beginning stages of ovarian failure. It was one of those phone calls that made you hold your breath until the last syllable of information was uttered. Oddly enough, this news seemed so finalized that I was somehow accepted it.

I would love to have a child, and witness their joy, curiosity, and innocence. It’s hard knowing that I could, but that I should not. It’s hard balancing desire and common sense. But I remind myself of adoption, and other ways of becoming a parent.

This is my message to those with TS and those who have a daughter with TS: TS doesn’t mean “failure”. TS doesn’t mean “not able to”. There will be many obstacles throughout your life/your daughter’s life. How it is handled is success. Be patient. Be understanding. Remember that even a small victory is still a victory. If there is a vision in your soul of how you want life to be, follow it. If there is a vision in your daughter’s soul of how they want their life to be, guide them to follow it in the best way possible.

I also want to add that I do not know what my life would be like without the support from my incredible friends, my incredible family, and my incredible TS family (yes, you ARE incredible). With love from others, and love within yourself, there is so much you can accomplish!

Alone, Together, Connected: The Virtual Choir Experience

Sun, 05 Aug 2012 17:13:00 -0400

Nothing could prepare me for how isolated and vulnerable I was about to become. I had practiced my part of the piece “Water Night” (Alto 1) for a month with the conducting track, and at this moment it had become like a mantra. It was the night of the original deadline for video submissions, and a massive number of people had recorded their videos - so massive that the Virtual Choir website crashed, leaving the procrastinators like me (temporarily) unable to record and bombarding the technical crew with worried questions (Why is this happening? When will I be able to record? etc) - so the deadline was extended a day (we were told after the original deadline). How incredible that was, to have so many people want to be a part of this global video that the website crashes - it’s an example of what humans will do to connect with others, whether through music or some other activity. Fortunately on the Virtual Choir Facebook page, I noticed that someone mentioned an option of recording your video on YouTube while singing along with someone else’s YouTube video of the same voice part. So I took a deep breath to slow my freight-train speed pulse, and decided to do it that night. There was something nagging within me telling me to not miss this opportunity like before (I had computer issues and laryngitis near the end of the deadline for the last two Virtual Choirs, so I was not able to record a video - once again, procrastination’s fault). I warmed up, closed my eyes, took a few deep breaths, and internalized the music. The next thing in front of me was a video of a young woman singing the Alto 1 part in a computer window, which I had used as a pitch guide, and, let’s face it, a confidence booster. After a few adjustments with my computer camera, plugged in my headphones, I began to sing with the young woman’s video. As I sang the part, I realized that I was singing alone in my room, yet I was not entirely alone in spirit - even though I have never met this young woman in my life, and don’t know her name or age or where she is from, we sang the same together. After recording, I watched and listened to the video. The end result was a video with some pitch fluctuations, strange facial expressions (almost pained), and a strange camera angle up toward my face, making me look like a ridiculous giant. But it was me, and I had put myself, my being, and my voice out for others to hear and see. In this moment I have made my self the most vulnerable that I had been in many years, perhaps in my whole life. Knowing that there was no time left, and that there was no time better than the present, I decided to send this video - my video - out to the Virtual Choir team and to composer Eric Whitacre. Knowing that they would see a video of a then 23 year old woman who has had no prior training in singing, made me exhilarated (I could not sleep properly for a week from excitement) and even more unsettled (remembering all of the tiny mistakes and blips in my video get irking me). After waiting for the longest two months, I find out that my humble video was accepted! Once the completed Virtual Choir video was aired a month later, I was once again astounded by the sound - aside from the captivating music and text, there in the video was the sound of the World, as one would imagine the sound of all humans living on Earth connecting as one, with all of their joys, sadness, struggles, strength, and heart. This message, this thought, makes this project more than just about the music and the art. It is something more - that need as humans to connect with others, and meet complete strangers (which is what the Virtual Choir members are doing now, thanks to the internet, Facebook, and Google+). It is about humans connecting and reaching out in one common goal, in unity, understanding, and harmony (no pun intended). It is about remembering that even though separated by countries, oceans, and time zones, we humans exist with their own lives and hardships. And when we do connect as a human race, something incredible occurs.

Dreams (October, 2007)

Mon, 30 Jul 2012 01:37:26 -0400

When the world is cast
Amongst silver hues and stars
We are not part of
The Earth, but rather we fly
To some far off land
An abyss of mirages
Tangled in our mind
Between the clouds and the truth

Woman in the Waterfall (September, 2007)

Mon, 30 Jul 2012 01:18:00 -0400

Enlaced in a trance
As the sunlight streams upon her water droplet skin
Being washed, caressed by the flowing falls,
She beams a radiant hue of gold

Sighing in her solitude
She resides in the relaxation of the whispers
Of the rushing water on her bare nakedness
With a smile she forgets the convention of clothes

She bends as a slender bamboo
Gently following her curves with her fingertips
Inhaling the mist she closes her eyes
Enlaced in a trance

Ocean (September, 2007)

Mon, 30 Jul 2012 01:15:28 -0400

Inhale, exhale - breathe -
in, out - quiet pulses sigh -
breathe - out - ecstasy -

The Sleeper (July 28th, 2012)

Sun, 29 Jul 2012 14:01:29 -0400

The sleeper, close-eyed
lays with one hand curved open
toward fluttering drapes

dakinishir - I was (finally!) able to participate in the Virtual...

Thu, 28 Jun 2012 22:57:00 -0400

dakinishir - I was (finally!) able to participate in the Virtual Choir this time! I will definitely look forward to participating in VC4. Anyone who is interested should participate. It really is a Worldly, connecting, and unique experience.

dakinishir:

mrbroregard:

flightofjoy:

So, this is what 2,945 singers from 73 countries and 3,746 videos sounds like? Astounding. Never in a million years would I ever imagine being a part of something like this.

Eric won a Grammy a few nights before debuting this in NYC

flightofjoy - if I can do it, you can too. Hope you’ll join us for Virtual Choir 4~

Prophecy of Springtime (April 17, 2009)

Fri, 22 Jun 2012 17:00:06 -0400

The prophecy within Springtime –
How wonderful it must be, full of perfumes
And the delicacy of infant’s movements

Where Time is held in the hands of days
Twisted in knots, like our words
And the tones escaping from our mouths

We yearn to drown in each others sounds
Breathing — quenching heartbeats —
And we ache to die within our silence, to become alive again

Sun Bursts in Springtime (April 17, 2009)

Fri, 22 Jun 2012 16:57:47 -0400

Small suns burst colors
In a sea of green they dance
Bourne by blue sky-breath

I forget my path
Hidden in the deep vastness;
Spring sapling, sun-burst –
My feet travel quietly
Yearning your secret pathways

When sky and Earth touch
My hands finally give way
After long silence

Small stars burst in loss
The many eyes wrapped in night –
The path of the years

Our hands become trees,
Bony and veined by the night –
Our moon rayed bodies
Linger in fragility;
Dark love and light love remembered

I grasp your tree-hands;
With one last breath of your youth
The sun is closed by the moon

Snow (Feb 7, 2010)

Fri, 22 Jun 2012 16:52:00 -0400

Snow -
Secret dreams
Caught in hair;
Winter illuminates you just
So -

She Travels from the Sea to the City (August 2008)

Thu, 31 May 2012 23:41:00 -0400

Cloaked in the lingering storm clouds of summer rain
She softly treads above the mists of the city’s gaslights -
Her feet are sore from running in the eyes of hurricanes
And her muscles tremble from being starved of life

The streets are abandoned and filled with echoes;
Windows are boarded up with planks of wood
And only the wind shouts the tale of misfortune
Of a plague that has rendered bustling apartments still

Rats nest in the cracks and debris of the solemn city
And live off of the rotten and the tainted water;
Infested by wrecks and tragedies, she moves on
Remembering - - -

How the children used to run with so much joy
While old couples would tend to their gardens
And the occasional street musician played for mere change
(Why did she never hear the screams of the dying?)

Dying twice, without any resurrection, her hands touch
The side of Apartment #22, though her senses are gone
She finds even the most minute memories consolable:
If she were alive she could (would) weep in remorse

Then in the fog, she sees life peering through;
An elderly man sitting on the stoop -
His clothes badly patched, his eyes full of waiting -
Casting fortune beside him for her to return

Moonstruck Fireweed (September 2008)

Thu, 31 May 2012 23:38:13 -0400

I - Dawn

Empty quietude - - (elegant flowers
Sweep in renewal as the fire-river
Bleeds from the glaciers) cold dewdrop showers
Cleanse the awakening - - purple flames shiver

II - Afternoon

Mountain-breath exhales from the peaks and quiver
Beneath the valleys - - Flames burst in their rite!
(Eternity burns in purple slivers) - -
Sun loathes such a beauty! Embodied height!

III - Moonstruck

Sleepy flowers - - milking the purple night
Of blackness and starlight of the calm-tude
(A faint fire glows, ember of sunlight
Emerges from the rest of Moon’s interlude )

IV - Epilogue

Dawn is drunk, and the full moon is waned - -
Amongst darkness a purple flame remained

Nocturne (October 2008)

Thu, 31 May 2012 23:35:00 -0400

Sky-threads unravel
In wisps of midnight blue stars;
Two rivers entwine

"Beauty beings with attitude"

Mon, 28 May 2012 09:55:08 -0400

“Beauty beings with attitude”

Momentous (November 2008)

Mon, 21 May 2012 11:20:54 -0400

The Earth seized in the gasp of the universe;
Only our bodies play in the sunlight,
Entangled in the shadows of the fields

Winter Triptych (Decmber 2008)

Mon, 21 May 2012 11:08:20 -0400

I.

The darkness is dampened with ice,
A white infinitum calling its prayer –
Humble and hushed –
Across the frosty, undisturbed Earth

II.

1.

In the morning-brilliancy,
A soft hum presides over the blue-scape
(Softer is the falling snow
Tiptoeing from above)

Bright-bathed light illuminates
The being of those eyes
Who gaze at such purity and Earthly rapture
As to be blinded by all else

2.

Amidst the fallen dust two gazers stand,
Hot cocoa steaming from their hands –
One shivers slightly under amore’s weight,
The other smiles and wraps each other in their scarf

(Alone in the vastness,
Entangled by snowflaked eyelids and warmth,
Two gazers close their eyes
And lose themselves in eternity)

3.

The old widow in her shawl
Awaits to feed seed to the sparrows
“How do you survive such cold?” she asks
Her age quavering as the brisk air
“Time creeps behind me, hours are blurring into days.”
The sparrows peck at the seed-feast
Knowing that this is the balance she sought

4.

The laughter of the children toll
Breaking the trapped silence of winter’s morn
Sleighs are sled and snowball fights ensue

But the smallest child sat and watched,
Building a castle of snow
That would soar into the winter sky

(And it did!)

III.

Icicles drip in solemn pitter-patter
While the moon breathes its light on them
How precious this melting phase
Sweeping the season in remembrance

After A Winter Sunset (January 2009)

Mon, 21 May 2012 11:05:56 -0400

When the sky lays down to rest,
Blushing gold and fuchsia
Underneath its brow, a crest
Of sinking clouds a-glow in fire

The coldest night comes, pale,
A drone of silence against a milky orb –
The solemn crunch of snow follows
Lonely walkers on their path

The breath of heaven, soft, escapes
From some unknown dwelling place
But between you and I the many shapes
Of blue wraps us within its trace

She Blossoms Before Me (Feb 2009)

Mon, 21 May 2012 11:02:00 -0400

She
Blossoms
Before me,
The tender sprig
With youthful gazes;
Eyes of a shimmering
Sea draped with sunlight and moon –
Now she emerges, curved and breasted,
This child who once skipped rocks across the sky
Her eyes are steady (but they still twinkle)
Her hair is pulled back (but still untamed)
Her tired hands and feet travel swiftly
Alone along the pathways
As she is led by will;
Blue footprints follow
Behind her–
She is a
Woman
Bloom’d

Moonlight Haikus (July 2009)

Mon, 21 May 2012 10:53:00 -0400

I

Shining silver trees -
Veins of the Summer moonlight
Become our pathways

II

Our feet are polished
With the dew of blue grass stains
While the stars open

III

Our bodies lighten
In the radiance of fireflies,
Sky held in our lips

IV

Silver ecstasy!
Fountains of stars, trees, and limbs -
Liquid moon stains us