SAFE PASSAGE & SMELLING SALTS

She’s come of age
finally able to stretch
her body across the earth
and open her mind to
allow safe passage
of life, opinions and love
through her head
with a promise
of songs in their wake
and a profound awakening
of her senses
like smelling salts
made of wine, honey and laughter.

change

a new day and a
slightly unfinshed dream
wakes me.
an uncovered feeling,
it's lonliness.
new desire moves within me.
I grow restless with
impulsive thoughts
and know the gypsy in me
won't be quieted.
I feel afraid of what
that could mean.
I hope my courage
doesn't choose to sell out now.

Nobody Knows

ALS is a phenomenon that mutated my great grandmother's genetics. She passed the ugly disease onto her children. My mother and two of her first cousins inherited the gene, and were taken by the disease. ALS ravaged my mother's body, stole two years worth of smiles, the ability to eat her favorite peach pancakes and all the weight from her slight body until she was only 45 pounds. She died as peacefully as she could in her husband's arms, but her battle against ALS was anything but peaceful. Eleven years after my mother's death, I am still battling ALS. Most people I talk to don't even know what ALS is. They don't know that there is no cure, no treatment, no cocktail of miracle pills, no therapy, no government funding for research to even FIND any of that. Nobody knows that ALS is an orphan disease. Nobody knows that it costs an average of $250,000 a year to care for a person with ALS (PALS). Nobody knows that military Veterans have a 60% greater chance of developing symptoms of ALS due to exposure to vaccines and other unknown variants. Nobody knows that the government has finally realized their grave error and is now funding Veteran's care. Nobody knows that some family's are forced to suffer loss after loss to ALS because of the mutation in the SOD1 gene and others. Nobody knows that upwards of 500 advocates gather yearly in Washington, DC to raise government awareness of ALS. Nobody knows that the reason we are an orphan disease is for the plain simple fact that ALS does not let us live long enough for our ALS ACCENTS to be heard or counted!Today, I am very excited to hear that my Oregon Governor, Ted Kulongoski, has officially declared May to be ALS AWARENESS DAY. Maybe this will make a difference in the awareness of this 'horrible life stealing without a chance' disease called ALS.

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.