Roots

I am not from here...
my hair smells of the wind
from the ocean,
and my blood carries
a savage nature
a Gift from my
Paint Tribe Grandfather.
The sun was my babysitter,
and I moved about the world
with a healthy laughter,
as my mother,
with moods of an opal,
instilled a curious freedom
that was harnessed gently
by my father's wisdom
and stoic integrity.
I grew up carefree
and hardworking,
using logs as my pulpits,
finding God in simplicity,
listening to the sermons of canaries,
and weaving chains of dandelions.

thanks to you

my pacific sky's on fire,
it's blazing up into the sun,
kaleidoscoping red on everyone.
I'm stronger than I used to be,
finally getting up off my knees.
shedding every malignant memory,
new garbage still holes up in black spaces
and every hour I learn to loosen myself of limits
and society's brick wall of imaginary lines.
I sometimes contradict my strengths
as I wipe my face of reluctant tears
and know I am breaking the limit as
I think of the culture shock of aloneness
and safety nets broken.
I've come full circle in thoughts
andthe warmth in your hello
does much to redeem the day.
my shapeshifting womanly moods
take on the form of gratitude
as I brush briefly against the
solidity of our relationship,
newly established and easily defined.
the realization sinks in:
I can feel the ragged fibers of my heart
and mind beginning to knit and heal.
thanks to you.

Wisdom

So the saying goes that man is born free, but everywhere he is in chains. I think writing is my way to become unchained. I am fettered by motherhood, single parenting, and military life. While some of these give me profound joy, others have given me bitterness.
I was reflecting on something today that I happened to read. It was a Bible verse, from Proverbs.

"Wisdom is more precious than rubies." Proverbs 3:15

We all know at least one thing about wisdom, that it comes with a price. Almost always wisdom is gained through adversity, or walking through fire. There is a responsibility that comes with wisdom as well. What are we supposed to do with it? It's not meant to be hidden, like some huge store of cash under your mattress. It's meant to be shared and dissected, learned from. Yet, I find that I walk a fine line between wisdom and cynicism. I have walked through many fires, as most of us have. I catch myself weighing other's grief and struggles to see if it has a heavier weight than mine. It makes me bitter and sometimes the only wisdom I see I have gained is the capability to muster the strength to tie a knot in the end of my rope and hang on. Maybe I should hang onto my rubies until they're polished, huh?

The beginning

Hmmmm. So my first real blog post and it's inevitably going to be about Lou Gehrig's Disease (ALS). That grim reaper of motor neuron diseases. Why? Because I am on a journey they call 'genetic testing'. I have only just begun to walk down this confusing path to isolating a gene called SOD1 in my genetic makeup.

It all started back in September of 2008. I organized and completed my first 'Walk to Defeat ALS' in Portland, Oregon. It was the tenth anniversary of my mother's death from ALS and I wanted to do something in her memory. So, I gathered family and donations and we presented ourselves in red shirts (my mama's favorite color of course!) to the ALS Association in downtown Portland and we walked three miles with thousands of other people who were dedicated to raising awareness for this awful disease. It was my first encounter with a PALS (Person with ALS) since my mother's death. I felt her all around me that day, she was truly with me, walking alongside me, giving me strength and reminding me of that grace I knew I had. In the months leading up to the Walk, and during that time of organizing and fundraising I began to immerse myself in information about ALS. I came across hundreds of articles about stem cell research, government funding (or lack OF), ALS support groups, ALS TDI (the largest ALS drug research lab), and I wandered on dozen of wonderful people who had ALS, who were dying, yet managing to live so beautifully. Then, one day, I came across a term called Familial ALS, or FALS. The most common form of ALS is sporadic, which means it can affect anyone, anywhere. Some studies claim that military veterans have twice as much of a chance to get ALS than the average person. But there is a form of inherited ALS and the incidence of familial cases is thought to be 10 percent of all ALS cases. 20 percent of the familial cases are due to mutations in a gene called SOD1. In families, there is a 50% chance each offspring will inherit the gene mutation and may develop the disease.

At the time my mother was fighting the disease, I was very young. It was also a time of NO INTERNET! Imagine that? So, at the age of 22, when I lost my mother, I did not have a clue that this gene could be mutating in my DNA. Fast forward a decade and here I am with all this information at my fingertips. My world literally came crashing down around me when I realized that my mother also had a cousin who died of ALS soon after she did. I didn't do anything with this information right away. I sat on it for a few months. I started joining FALS support groups and met other people in the same situation. With a 10% statistic, I didn't think there would be many of us out there. But I was wrong, and with alot of cheerleaders to back me up, I eventually got into contact with someone in January who gave me information on genetic testing. There are several universities who are doing research on the SOD1 and the newly discovered ALS6 gene. To qualify for one of the studies, you have to have at least TWO family members who have been afflicted with ALS. One of those has to be a parent, sibling or offspring. I certainly qualify. But it was only when I was sent the preliminary paperwork from Emory University asking me to trace my family ALS history, that I found out there were more than two family members. At this point, I'm not sure how many members there are with ALS in my family.

The task of untangling a genetic history of Familial ALS is in front of me. Some may wonder what the importance is. But knowing the research that's done with the information gathered from the DNA of people with familial ALS, in the end it can only HELP. If I do carry this SOD1 gene-it means my children have a 50/50 chance of carrying it. Anything I do to raise awareness for ALS, will be for them. For a disease that has no cure, no treatments and will kill you in the end..there has to be HOPE. Sometimes, that's all there is...but it's a start.

This thing called LIFE.

This Thing Called Life

On this 21st day I was born

under a blackend October sky

in the witching hour of the night

while blazing reds and golds

stood like silent sentinals

over my mother's first child

which she beheld as a gift

her joy hued by jeweled tree's

and a sparkling burning hope

that her new baby girl would be

blessed with endurance and wit

she kissed my ebony wild hair

and in that spell she transferred

a lifetime of grace and strength

which I carry still, even in turbulence,

in remembrance of that fiery haired

woman who gave me

this thing called life 33 years ago.



Written in memory of the woman who gave me life, in honor of my birthday. For never is a woman more ALIVE then when she gives birth.

Nostalgia.

My dad's grandparents came from Poland over 100 years ago and settled a small valley on the Oregon Coast. Hundreds of acres of old growth forest became what is now Kosydar Ranch. Generations of hard work and sacrifice have carved out that valley and built a ranch alongside a winding river. My great-grandparents had 13 children, one of which was my grandfather. My dad inherited that ranch in 1979. My four siblings and I were raised on 100 acres of wide open spaces and good old fashioned farm grown food. And discipline. haha! Early this past year, my grandfather's last living sibling passed away. She was 93 years old and she was born in the farmhouse that I grew up in. She was the last of the 13. Her name was Francie. She and her sisters, my other great aunts, would visit us on the farm from the big city of Portland, Oregon when I was a kid. I thought they were glamorous older ladies. :) They wore heels and red lipstick and would walk to the river in their fancy 1980's dress up clothes....I'd walk behind them and wonder how they balanced those heels on the rocks so well. They'd pose against the fenceposts while my great uncle's snapped photos of them. They posed on those very posts back in the 1930's, when they were young women. They must have felt the same nostalgia that I now feel when I walk along the farm's gravel roads to the river. But I don't wear heels. ;) One of my dad's cousin's, who is in her 70's, sent me a small package this week. Inside was a white pleated skirt that used to belong to my great aunt Frances. The story goes that my great aunt would wear this white pleated skirt to town dances in the late 1920's and early 1930's. She was very young, and was chaperoned by her brothers and other sisters. My great grandmother, Anna, would protest loudly, telling them: 'If you're going to stay out late, remember there will be NO complaining before church tomorrow! Be home EARLY for the Rosary!" According to my cousin Marilyn, who was a kid at the time, the great aunts and uncles were indeed grumpy on Sunday mornings. hahaha! But this 80+ year old skirt of great aunt Francie's is in pristine condition. It's almost a century old. So I tried it on yesterday, and although I do NOT do it justice, I let Jewel get behind the camera and she snapped some photos of me wearing it. I'm thinking of taking it back to the ranch with me during summer vacation, slipping on some heels and standing in the field by the river. Nostalgia. :)

Remembering Alea.

Alea. I say her name out loud almost every day. My daughter, after all…is named after her aunt Alea. When Sophia Alea was born and they laid her on my chest, I spoke her name out loud to try it on my new baby daughter, and was taken aback by the force of life swirling around her name. Glittering in the air. Four years have marked the time since Alea died. I’ve taken all the light from her memories and it’s my lifeline, some days. The memory of her laugh. Does anyone remember Alea’s laugh? It was the silliest giggle…she would squint her eyes and smile so widely. Then there was that muffled laugh she had when she was lighting a cigarette, it was almost manly and nobody was safe from holding back even a smirk when that laugh came out. Then she’d glare at the cigarette and say: ‘I really need to quit this shit.’ Blue eyed, my sparkling girl. She had every good quality that any woman covets. Compassion, loyalty, strength born of high standards, strong work ethic, the ability to be so very unselfish. She was an amazing caregiver and gave up everything for the people she loved. She gave and gave, never taking for herself. That was her worst quality. It’s what killed her in the end, the inability to say no to anyone. She wanted to be a mother one day. She needed no one’s help, she was fiercely independent. She prayed. She was never afraid to show her emotions. She could burp SO LOUDLY, that it would scare the elderly and very young. She would give anyone a minute of her time. She was a wise old soul in a 22 year old body. She lived a lifetime and of course, I was not ready to let her go. I have no doubt in my mind that she would have dazzled all of us with her intensity for the rest of our lives. I sat in the church during her funeral knowing I was fooling everyone. I was pretending to be that woman of strength that my family is famous for. But Valium was holding my hand. My uncle was stoic, he was the first to give words in memory of my sister. He had done the same seven years earlier for my mother’s funeral. It was the strangest and most digusting déjà vu to be sitting there. Again. It angered me a bit. I looked around that church, it was filled with people. Standing room only. Did I wear sunglasses? I don’t remember. I had on my sister’s black coat. I had reached inside the pocket earlier that morning and found one of her cigarette lighters. It’s still there, four years later. I burned myself with it continuously that day. Burned my fingers, playing with it inside the coat pocket. Flicking it incessantly. A reminder that I was alive and she was not. All of my senses were heightened by the pain of her absence. I could feel the air passing against my face and I was glad it was winter. It should be cold and gray the day you put your baby sister in the ground, right? If it had been blazing sunshine, I think I would have screamed at the sky. Sitting in the church was torture. I was horrified to be separated from her body, I had just spent six hours the day before with her. Her hair had still be wet from the shower she’d taken before she got in the car and sitting in that church I couldn’t stop thinking about how she would have been so COLD if I hadn’t dried it. I was glad she had socks on. I wanted to wrap her in a blanket. It was so frigid in that church. I looked up and saw the stained glass church windows and the slivers of light beaming through the glass. The air was alive with specks of dust, it glittered in the spaces between the people. My dad nudged my elbow and tilted his chin towards the air. I knew he too, was watching the glittering dust and the beam of light that shined straight down from the ceiling and onto Alea’s small pink casket. Finally, some warmth.