Wish I may Wish I might

The most heartbreaking thing one can ask of a mother is to have her watch her child suffer. I have done just that for over a decade. I watch and can do little. I am caretaker not biologist nor immunologist ..virologist ..researcher..or doctor..though I have met with and discussed in depth with these "specialists" what they think is causing this disease in over 3 million people in the US alone. They are guessing..they don't know. Do no harm means do nothing. Mothers can not do nothing.
So we are 6 weeks into the desert air. Patient is a bit more active..we are outside most of the day..his phone app tells him he has taken more steps on some days here than at home. Stomach ( gut biome) is working well..with fairly restricted diet. Sleep is mostly uninterrupted. Half day excursions to hike or shop the farmers market are manageable. What we look for is how Ty feels the next day.In years past energy spent on one day..gets taken away 10 fold in a day or two..( yes they are studying that as well). There appears a little less loss here...but still there. He has a schedule of detox treatments he performs on a daily basis..and added a "good"dust mask to wear in public places that feel "problematic" to him . Molds and toxins we breath everyday can cause sudden onset of whole body inflammation and slow down cognitive function..almost immediately for a great number of ME/CFS/SEID  affected patients (the name is a mouthful and part of the problem..not recognized by the medical profession). Systemic Exertion Intolerance Disease.We wish it was called " can't move, can't think, and find out fucking why please" disease.
The most notable improvements seem to occur at higher elevations. We know that higher means less oxygen content..there are theories about that as well..pathogens may be making excess oxygen in the tissue causing too much oxygen to accumulate in the body...going where there is already less..may balance things a bit..? .."give us a million bucks" researchers say "and we can study that!"
I've seen a few half smiles and heard some light-hearted whistling..small things.
A new camera to document the desert and her delights has also added some physical and mental exercise ..and a reason to wait for the next sunset. For me..writing helps..thanks for reading.
Here's some sculpture I found in the desert..and

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First Things First

     We settle into our little abode for a 2 month stay. I sweep, wash and inspect every cupboard and shelf. Critters live here in the desert. I don't want any surprises. We go to town, get provisions, set up mail delivery, obtain a library card and find the post office, hardware store and a coffee shop with internet. I make mental notes of seeing a hospital, police and laundromat if I need them. 
The basics done..I let folks who need to know, we are safe..and we will not be missing the colder weather back in North Carolina or Maine. We are about 10 miles from town..but the big open desert with mountains on three sides make our little spot of humanity seem very isolated indeed...an oasis of sorts. The town was named for a group of palms that indicated a water source to the native Americans and miners that crossed the mountains. In the 40's land here was parceled out for cheap if you could build a structure and live there for 3 years..abandoned cabins dot the horizon. 
I too seek an oasis...where a hint of health might be found for one young man.
thanks for reading..next time ..well...how is the lad doing you might ask?  join the blog to get the next news..there"ll be critters!!

into the sand

With motels being so problematic we decide to drive on to get to our little shed in the sand one day early. I text the owner..someone will meet us and guide us to the house..as it will be "pitch black" and some of the roads are "impassable"..oh jeez..what have I gotten us into. We meet our guide at the local convenience store I grab some eggs, milk and gallons of water..and we are led out into the night. The surrounding area is dotted with a twinkle here and there, signs of life. A few more miles of dirt roads and so many turns I will never find my way back, and a small structure appears out of the dust.
The motion detection lights click on and there she is..just like her pictures (they aren't always). A modest 1950's structure designed with flat roof, one bedroom ,a working kitchen and thank the lord, hot water in the shower. OK ..relax..the fight or flight mechanism inside my motherhood slowly starts to subside. Here we will live for 2 months. In the morning we can "see" where we really are.

Thanks for reading ..you can join to get notifications of the ongoing saga if interested. Next time .."where are we?"

Driving and the creative mind.

Chilly..grey. Cloud filled skies today..good for writing.
I am attracted to New Mexico. While Santa Fe is a bit too touristy..I have lived in other areas where there is tourist season..and then a lull to refuel..make new work..meet your neighbors. We drive through and I keep this in mind. When I drive long distances ( I am use to driving alone to art fairs all over the country to sell my wares) ..I noticed that once on the road my thoughts would soon turn to all kinds of creative endeavors..titles for chapters of books I'd like to finish.. finding that bridge for a song I started last trip, design elements on a water tower in Texas. I'd have a notebook on the seat next to me to jot things down. Now with the I phone I can record a voice message reminder and If I pull over..take a picture of something that grabs my attention. It was as if when my attention was occupied by driving , another side of my brain was allowed to come back online and start sending out messages. On this trip with my son..he is listening to his music via earbuds and I make mental notes of   1. things we need to buy    2. things we need to do    when we get to our destination..a small house in the middle of the sand at the end of a dirt road in California where I know no one. I don't mind a challenge ..I just like to be as prepared as I can for the unexpected.
         Things we need to buy
        1. drinking water...don't be fooled by all that bottled water at the store . Tyler's Dr assures us there is good bottled water and bad bottled water..I need the good stuff.
      2.    Food..sure..sounds easy..but we are gluten free, consume very little processed foods and for health reasons find grass fed meats and free range eggs a part of our usual diet.
       3.  assorted odds & ends..soap, white out and a pencil ( doing my taxes), sunscreen, hats, flip flops, chocolate.
     That should get us started. We'll be here for 2 months. I'll find the Post Office, library, best local Mexican food next trip. That's the "do" part.
thanks for reading

Driving across Arkansas and Oklahoma on Rte 40 is not that exciting unless you get off  the highway..and my way of thinking is when you are in an older mini van with a chronically ill co pilot you ask the travel goddesses to" please don't let me have a major vehicle problem"and you promise not to take too many side trips.That seemed to work. ME/CFS my son's disease is such that even sitting upright for long periods of time is very tiring so we stopped often to just lay back..shut eyes.
His symptoms also include being sensitive to toxins (man made and natural) molds and cleaners, fumes and pesticides...so motels are a major black hole in the travel arena. One was ok ..one smelled so perfume filled I left the front door open..and still it kept him awake most of the night. On the recommendation of a fellow traveler we stopped in Winslow AZ and stayed at La Posada hotel, a beautifully renovated historic adobe. Filled with art and books it was a good nights rest ..and as my fairy godmother says over my shoulder.." you deserve a night at the ball". Next stop ..the desert.Thanks for reading.

Please no email Valentines!

Valentine's Day...great. Just ignore it..it'll go away.    Since last I wrote..
I was going to say a few words about driving my son and myself from North Carolina to Cal desert.
and no, I do not always speak (write) in complete sentences..I don't like punctuation and I am a very bad speller..just ask the kids...anyway______ Van is serviced and packed with as little as is safely possible for a road trip...flashlight? check. sleeping bag? check. phone charger? check. shovel? ( I am a Mainer after all)  check. We go back to the house twice for forgotten meds and marijuana muffins. (medicinal silly) ..we stop in Nashville to do a Walmart run..which entails purchasing functional clothing in exchange for the ones you are wearing from top to bottoms! I pick out grey boys' tennies, 2 tops, 2 pairs of socks, 2 pants ( one I can sleep in) and undies. I grab a $5.00 hello kitty back pack and a $1.00 shopping bag to hold the stuff..my son does much the same..we get a motel room and ditch all of what we were wearing and try on the new. I get an A+ for finding great pants for 7 bucks. Oh yeah and I found a black knit dress for $6.00 just in case..of..I don't really know..for fun. As we drove away the next morning heading west I wondered (in Spanish) what the housekeeping personnel thought when they found our old shoes, clothes, purse and wallet in a neat pile..with a note.."FREE"..so were we..and heading west.. Thanks for reading.

                     Ceiling of the tower ( designed by a woman Architect ) at the south? rim of the grand canyon..I am always looking for a sign..a symbol..an arrow to point me in the right direction. There were many here.

8 weeks in a balloon

well..as you can see the last blog date entry..I have NOT been blogging at all! Six years later and still sometimes there is just too much to put into words so I paint or sculpt instead. But let me start anew.
     Maybe at some point I will fill in the missing years..but I'd rather start from the present for now while my memory is fresh.
     My son has ME/CFS   Myalgic / Encephalomyelitis and has been house bound for a more than a decade. After his father died we moved from the coast of Maine to the mountains of North Carolina hoping for some relief from his daily fatigue and inflammatory responses to many kinds of molds and toxins both natural and man made. Bought a house..found a studio from which to work and hoped for the best.It seems it is not to be. Two years have passed and his symptoms worsen so once again we search for a place where he can stand, walk and think clearly enough to regain some of his independence...I will be note taking and writing thoughts of this part of the journey for now as it unfolds..sometimes a list of what the day's tasks are...hopefully a bright spot here and there.
     We will be living on the edge of Joshua Tree National Park in Southern California for the next 2 months to see if the rumors that we have read are true..that for some reason others like my son ( and yes there are millions) find that the desert air, with less pollution and a cleaner environment seem to make them feel better...some much better..don't know why..as of yet...would love to see that examined.
     We have driven from North Carolina with few belongings ( don't bring the stuff that lived with you when you felt bad) and hopes of at least an interesting experiment and maybe..just maybe..some hope for the future. I'll jot a few notes about the 5 day car excursion next time...note to self..hey !! there's a whole lot of room out there in America!! we should spread out a little! Thanks for reading.