September 28, 2015

Getting Radical

I left the movie theater last night so that I could see the eclipse, and got locked out. I'm sure they thought that I was crazy, but it was worth it. The sky was perfectly clear, and without any light pollution, the huge red moon was surrounded by many thousands of stars and the ever stunning Milky Way. When we got home, we just stood in the yard looking at it for a while, talking about the ability to not just 'do the work' of walking your path, but to know that you're doing it as effectively as possible.
We tossed out our various personal truths, like "everything that happens is necessary and embraceable," "Take a moment to let your mud settle so the path can reveal itself," and "know the difference between powerful work, and forced work."

My work, right now, is just me.  
Little old me... suddenly free from obligation, when what I need to quite literally survive, is to learn how to take care of myself. 
How poetically perfect.
What's funny is what I am finding is necessary for self care. It's a humbling thing to discover, at mid life, that you haven't a clue how to take care of yourself. It's amazingly difficult to learn to do simple things like eat, rest, or even allow emotions, when you've lived an entire life of extrinsic motivation based in care of others, and the simple ragged practice of surviving... 
not living...  
or even more radical...thriving.

Well, I've gotten myself into a bit of a corner, where surviving is the crisis at hand, but I'm finding that my best chance of doing so is to learn how to truly live.
There's a lot of scary medical decisions, seemingly all of which scream 'more suffering, and dead ends.' After an absurd amount of research, I've come home to the idea of simplicity. 

I think, even now, that the simplest answer is always the right answer. 

So, for now, screw medicine, and treatments, and machines
Every cell in my body wants to live, and most importantly, so do I.
THAT is something I know how to support.

This has always been a sort of a lifestyle blog, and the style of living has seen many dramatic shifts over the years as I follow that question of want vs. need, and pick away at the huge task of Being Human. 

It's time to return to the basics: Simplicity, Radical Self Care, and Soul
I think a life can be built pretty solidly on a foundation like that.

September 15, 2015

Rainy Fall

Most people think of the desert and imagine heat, and sand, and rock. The high altitude desert is not that. It has a volitility that works wonders for the mood, and the connection to what's around you. The weather can swing from a too warm (80 for us heat wimps), brutally dry, sun baked day, to a wet, cold, green scented, color popping thunderstorm which blots out the mountains.
I'm taking a day to just chill. Doing a bit of painting, a lot of writing, reading, probably still too much research, and sneaking cocoa and honey into my coffee.
Hurricane of Fun: The Making of Wet Hot American Summer is playing in the background.
It just gets too quiet sometimes. I'm still adjusting to the whole family being gone all day.
I really haven't seen most of it, save for a long discussion on how it was actually freezing and rainy for every day of the shoot, rather than hot and summery. The cast, despite being ill equipped, and facing constant weather hurdles, all commented on how many blessings were brought by the ironic weather.
It got me to thinking about how our expectations can get in the way of our reality, and how much more beautifully perfect the world is than how we would make it...had we that level of control.
So, my lessons for today:
The desert can be cold and wet, summers are not always summery, seasons dictate little, our expectations are usually wrong, blessings are usually disguised, the sun shines off the absolutely soaked landscape...everything can change in a second.
A second.

September 14, 2015

Natural Beauty

I spend a, likely, unreasonable amount of time on my sofa doing medical, biochemical, and nutrigenomic research. The data is difficult to file and annotate, the articles are oft overwhelming, infuriating, and defeating.  I have nothing to do but keep wading.
When I meet with my doctor it is imperative that I understand what he is saying to me, what he is suggesting, and what my options are so that we can collaborate and increase my chances of recovery.
There is a lot of grieving involved. I find that I am quite literally in the stages of grief, somewhere near acceptance, but it's complicated. It's complicated when I can reach acceptance, but not for my kids who have inherited some of my faulty genetics, or the people whom I am helping along their own path that are not able to understand the research material that contains the answers to their questions. 

Most of the time I'm just working, and living alongside my family. Life is peaceful, and happy, and they are fulfilled. 

I accept the reality, the possibilities, and I put one foot in front of the other each day, day after day.
Nights can be different. The quiet, and the unfolding and filing of hours and hours of research, understanding, and unacknowledged reactions, can get heavy. The accumulation of time...years of illness moving backward as far as I can recall, and fears of outcomes moving out to an unknown amount of time...

It's ugly business, and however naturally human, also an unnecessary suffering.
It's a difficult thing to remember that not one bit of that is real. That moments past do not exist anywhere but inside a judgement in my mind, and moments not yet had, have never existed at all - and are even more fictional.

When the need to escape suffering and fear is large enough, I think, you learn to find the place where time  s t o p s...  where you are outside of it. The place where the cicada is sharp, the smell of sage is powerful, and you manage to witness a season in movement right before your eyes.
So this is truly where I live. Not in my research, or my outcomes, or the charts, labs, and history, but in the place where seconds become hours, and hours become days, and nothing matters but the beauty of it all.
"Every second is a life." 
I read that in Rowing Without Oars, years ago. The words of a small child to his dying mama. "Every second is a life, Mama."

It is.

I've lived ever so many lives. I've been ever so many people. Come what may, there will be many more of those lives outside of time, where there is no past, no future, nothing to suffer, and only the Experience.

I'm so grateful that I get to do it here in this beautiful place, with a tribe of beautiful people.
Every second is a life. 

What a blessing.

What a life.

What a moment. 

What a blessing.

September 11, 2015

Opiates & Chocolate

I am sick. I could tell you how sick I am in terms of symptoms, in levels of pain. I could tell you all about the genetic testing and how many, and how severe the mutations. I could write you a book on mitochondrial DNA damage, and Single Nucleotide Polymorphisms. I could, because of how much research I have completed, and how utterly poetically cruel it is in how it ties into everything else I know about my body and what's been done to it. I could tell you all about why I can get better and not hold onto it. I could tell you a lot, but it would only be part of the story. I'm still waiting on tests. Big scary, life altering, not a lot of people get better from it,  kind of tests, and I'm afraid. I'm afraid, and a little mad, and a lot grieving, and also wondering at how I can also be feeling stupidly lucky.
When you watch movies, or read books, or what have you, so often the sick, the suffering, and the dying are beautifully portrayed in these light filled rooms, curtains fluttering in the breeze, gorgeous linens, and sweet soft night clothes. It's fictional suffering...suffering made more bearable for its prettiness. Yes? It's something I've noticed since I was a kid. The romanticism of the fictional suffering scene. What do you suppose that is about? Is it hope? Hope for ourselves, that when our time comes,  we will not be sweaty, twisted in heavy sheets and tousled blankets, suffering for real, not the pretty kind, in a dark corner room?
I can't help but ponder it right now as the pain streaks through my body, burns in my bones, and twists my face up to something I am quite certain my love would tell me is still beautiful, but really is not. I cannot help but wonder if the soft daylong light from the unreasonably large eastern and western windows that floods my room in prettiness eases my suffering. As my linen covered duvet crinkles, and the soft cotton sheets look purposeful even when tousled, and my ever so delicate night dress manages to keep me cool and warm, does it ease the pain? When my head is turned, over and over, to the balcony doors where the curtains are twisting themselves in and out if the house...while the magpies chatter and the big Chinese elm creaks... and I am... wholly... aware of the irony of the beauty right in the face of agony, am i suffering less? I ask myself if agony is allowed, or if it is reserved for those who are ever so much more wanting than I. I turn over, faced with another unfair view of the mountains, to see a crow looking at me from the fir tree. Now I know what the magpies were on about.
"Poor pitiful girl," he seems to say, "tsk tsk. Where is your grace?"
So I close my eyes.
No. I don't think the beauty helps the suffering. I think it's for the ones who fear taking their place someday.
Our media is so distorted when it displays death, dying, illness and suffering. From childbirth to deathbeds, they get it all wrong. I wonder, if they got it right. If our culture taught us suffering with grace, and without fear of being in it, if perhaps we would feel the pain less acutely. Why do we live in a culture where this is not polite conversation?
The kids ate home and the silence is gone. I'll tell you some more truth...
I'm going to take one of my few remaining pain pills, grab up the piles of chocolate he brings me, and go share it with them while watching something funny on my phone. Eat that, Pain.
On a side note, it turns out that medical Marijuana is legal here, and there is a dispensery here in Taos. My nutrigenomic doctor suggested it. I guess we'll see about that. He also suggested meditating. I guess we'll see about that too. For now, opiates and chocolate are my substitutes, and thank god for happy families, great love, and stupidly pretty suffering ;)

August 8, 2015

It Is Time.

This blog needs a makeover. It needs to reflect the beauty of the makover my life has undergone.

It is desperate to swell with the stories of all that I have done, and been, and seen.

It is aching to introduce my tribe.

I have so much to say. It is time.

September 20, 2014


For those of you who don't know, I'm on Facebook. @Aimée La Vallee
With 1.6 million views to my unused Google+ account I figured some of you must be looking for me. So now ya know. ��