Tuesday, November 11, 2014

Epilepsy Awareness Month: My Turtle Girl

"Epigenetics, a relatively new field in science, could help define the causes of Autism and offer up new modes of treatment for the disorder, as well as other diseases like cancer, schizophrenia, Alzheimer’s and diabetes. Epigenetics is the study of gene expression governed by the epigenome, the cellular material that sits on top of our genetic code. The epigenome does not change the genetic code inscribed in our DNA; rather, it activates or silences genes through the mobilization of molecules called methyl groups. These chemical changes are triggered by our environment. Toxins, pollutants, changes in diet, deficiencies in prenatal nutrition, and exposure to stressors alters the way our genes are expressed through the epigenome."  Ruth Hopkins (Sisseton-Wahpeton/Mdewakanton/Hunkpapa) 

I became a grandmother in March 2013, and it has changed me in all the ways that you might expect: I am now a drooling, grandbaby-picture-carrying, buy-that-cute-outfit-NOW fool.  Georgia is a real beauty, both in body and spirit, with her mom's beautiful eyes and skin and her daddy's sassy dark curls.  A glorious mix of North American and South American tribes (her father is Venezuelan), this is one awesome human being.

It took awhile for that glorious shine to dim enough for us to realize that somewhere around five months of age, Georgia was having some trouble with her vision; she also wasn't grasping objects, wasn't hitting the developmental milestones.  The pediatrician kept reassuring her parents that not all babies develop at the same pace, and to be patient.  But finally my daughter was able to catch an unusual pattern of movements on video, and take it to the pediatrician.  He had them at the Children's Hospital neurology department within an hour.  Georgia was having seizures.

To make a long story short (and it has been long, and working with doctors and the medical industry has been exhausting for my daughter, even in Washington State, which had health coverage well before the Affordable Care Act), Georgia was diagnosed with Infantile Spasms, a form of epilepsy. 

After trying several medications, which wasted precious time, one of them finally worked, and after that, a different one took care of a new kind of seizure (it's not uncommon for IS kids to have a variety).  "Whew, out of the woods," we thought.  She might have a longer path towards steady development, but at least the seizures were gone.

But Georgia's development continued to be slow, and my daughter kept pushing for more genetic testing (the first two tests had come back negative for any abnormalities); her Washington State insurance balked, as this is very expensive and there had been no results.  Finally, and blessedly, the genetic lab agreed to treat Georgia's test as research, thus freeing them up to do a really in-depth genetic search of both parents and the baby. 

They were looking for a recessive gene, something both Miranda and her husband might carry.  We thought, how could two people from completely different continents possibly have a rare recessive gene in common?!  But what else could explain Georgia's difficulties? 

ADSL.  Adenylosuccinate lyase deficiency.  It's a very rare condition - probably fewer than 100 people are known to have it right now - and it is, indeed, a recessive gene, carried by both of Georgia's parents. 

Hello, Creator?  Just what the heck are you up to??

Last night, I saw a cute photograph of a little girl Georgia's age on Facebook.  My sister-in-law, Nina, and I became grandmothers right around the same time, and it is a joy to share photos with each other.  But yesterday what I saw was a little girl standing up, playing peek-a-boo with an sweet little hat, looking into the camera and smiling. 

Sometimes it takes me by surprise.  I mean, my grief over my granddaughter's long struggle toward simple accomplishments like sitting.  Standing.  Holding objects.  Making eye contact.  Speaking.  I said something about it to Margo, my wife, who was sitting on the sofa with me.  She reached over and patted me gently.  She knew there was nothing to say.  One little tear slipped out of my left eye.  A deep, indigo sadness swept through me, quiet and unspeakable. 

Then I thought of how it must be to be Georgia's mother, and have to deal with all this rage and grief every minute of the day while still staying on top of multiple doctor's appointments, PT, OT, and eye specialist, medications, insurance, SSI, and a husband who can't work because he hasn't yet gotten a green card.  I thought about my daughter's reality, how much she loves Georgia, all of her determination that Georgia will be okay.  And I didn't let myself cry anymore.

Instead, I got out of FB and went back to work updating Turtle Girl Jewels.  This is a blog I made to tell Georgia's story, and to sell jewelry that I make as a way to supplement rent and utilities, developmentally-challenging toys and materials, for my Turtle Girl.  When I finished that, I pulled the bookshelf next to the sofa over to me, and out came the boxes of beads.

Making the jewelry is a meditation for me at the end of a day of teaching and talking and grading and prepping: I sit quietly on the sofa with my wife and we indulge in brain-candy TV, chat about our days, while I spread beads out and play.  Or pray.  Beading is a kind of prayer.  Other Native women I know are true beading artists: I am not even in their league.  But I love the feel of abalone beads, and the sound of glass and silver and wood and turquoise and jade clicking against each other.  And into each piece, I put a little bit of my love for my granddaughter.  A little of my hope.  A little of my determination.  And a little petition.

We never plan for catastrophe; no, not even those of us who have been through it already.  We never think it will happen to us.  Until it does.  And then we think, why me?  Why my child?  Why?

Some days I wonder, which ancestor did this gene come from?  My research turned up this interesting fact:  Recent data on the number of Native American patients seen for epilepsy per 1,000 persons indicate a high prevalence, more than double that for the United States as a whole.  Is that how this gene found its way to my daughter, and my granddaughter?  Did it come through me?  I have always thought of my ancestors, even (sometimes especially) those 'bad Indians' who broke laws and committed crimes (sometimes, against each other), to be my source of strength. They have guided me, spoken to me, taught me.  Taken me through some of my darkest moments by their own examples of strength.  

But did one of them carry this gene, too? Part of me wonders, is this genetic material the result of long-term physical, mental, spiritual trauma from disease, starvation, violence? (For an educational look at contemporary health care and Native epilepsy, read Closing the Distance: Native Americans and Epilepsy.)  I know that for California Indians, the introduction of a European strain of syphilis caused not just sterilization, but stillborns and genetic mutations; my great-great-great grandmother, Severiana, was born with only three fingers on each hand (and she was the only infant out of her mother's twenty children to survive infancy).  

In her article "Epigenetics: Scientific Proof of Historical Trauma," Ruth Hopkins (Sisseton-Wahpeton/Mdewakanton/Hunkpapa, as well as pro-bono tribal attorney and a science professor) writes,  
Epigenetics may provide hard scientific evidence of intergenerational trauma among American Indians and link it directly to diseases that currently afflict us, like cancer and diabetes. The term "intergenerational trauma" has been used to describe the cumulative effects of trauma experienced by a group or individual that radiates across generations. For natives, intergenerational trauma has presented itself in the form of genocide, disease, poverty, forced assimilation via removal of children from their families to boarding schools, the seizure and environmental destruction of homelands, and other routes of European colonization.
Hopkins, whose son has a form of autism, goes on to add that 
We can use epigenetic inheritance to restore the action of our genetic code from one generation to the next. Once environmental stressors are removed and behavior is corrected, our DNA will revert to its original programming. We could cure diabetes through behavioral changes that allow our epigenome to operate correctly. The elimination of toxins and pollutants could greatly reduce the incidence of cancer and birth defects. Such modification of environmental exposures and behaviors will restore and even improve the overall health and capacity of our genetic line. As for my son, further research in epigenetics may soon decipher the specific mixture of genetics and environmental exposures that lead to Autism Spectrum Disorders.

Epigenetics.  Who knew.  When I read this article, I felt nauseous.  Sickened by the depth of what colonization can still do to us.  If our ancestors did carry this epigenetic scarring, I know it was beyond their ability to control - like so much of colonization.

I hope the Ancestors are watching over Georgia.  Despite her diagnosis, this kid is feisty, happy, and dear.  Sassy is her middle name.  (No, really: it is!)  Her personality shines even though she doesn't make eye contact.  She emits joy from every pore of her body.  She is usually a happy, smiley little girl.  Perhaps when she laughs, its because some ancestor is clowning it up for her.  Perhaps it is simply who she is: all love.

I don't know.  I wish I had answers for my daughter.  I wish I could be there every single day.  I wish I could make this all better.  That's what moms and grandmas are supposed to do, right?

Instead, I go to work every day.  I help my daughter with rent, utilities.  I bead at night.  I carry Georgia and her mom in my body with me.  I look at photographs of my mother and grandmother, both passed, and ask for their help. 

I understand, now, more about being human than ever before.  How much of life simply does not come with words.  How some things are a mystery, inexplicable, beyond us.  I'm beginning to understand that we can't understand everything, we can't make sense of everything.  We can't fix everything. 

This goes against all that I've ever learned about being human in the last fifty-three years. As a child of trauma, as someone who worked her way out of poverty, abuse, this - helplessness? - is a demon I'm not sure I will ever lay to rest.  I'm not sure I can simply sit back and love.  I am not a 'let go and let God' kind of girl.  I do.  I fix.

And I write, even when the words I need have not yet been invented.

It's Epilepsy Awareness Month.  Believe me.  I'm aware.

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