Everyone says how little I have changed, I know I am 3 times older, and almost twice as large. ( A bit thrilled to see that with all my “OMG, I haven’t had this in 40 years” eating I am actually down another 3 pounds, actually thought I would have gained 10.)   I hope I am wiser, kinder and more careful of others feelings and more appreciative of their existence. 

I found that writing on the train was more spoons than I had in a day. (New readers, spoons are a measure of energy, just trust me, or google “chronic illness, spoons”) The travel and view was well worth all the drain though and I only fell once and luckily it was into another passengers lap. I was on the way to the bathroom when the train picked up speed. Embarassing, though that silver haired and silver tongued cowboy offerred to let me stay for awhile, I am sure he was more injured than I. He was in the other accessible seat, cane and brace, “thrown from a horse when m’ boys said I was too old to be doing that so now I ride trains to make em worry.” He was Albuquerque to the last New Mexico stop,

I met many, many wonderful people on the trip, but that is what made writing difficult. I love people, but they are a constant small leak in my energy and there is no quiet place in accessible coach seating. So I chose to use my communication spoons to elicit stories and share laughter and updated with a few pics on FB. My goal later today is learning how to connect my media to WordPress so my Blog followers can see with my cameras eye as my tongue becomes less and less an effective brush.

Now I am here. I drink coffee on a deck that overlooks the Mystic river. I wear fuzzy slippers and my Sarah (a Lularoe sweater style). I watch the leaves change shade. Each morning another tree has accepted the inevitable approach of winter. The squirrels tease the two jack russells and the crows scold us all. I have begun reconnecting with those to whom I truly owe the debt of my life, wishing to acknowledge, to somehow repay a debt they never even knew I owed.

I was frequently suicidal as a teen. Fully planned and prepped, but even then I had a 24 hour rule. Perhaps because of the part of me that has always believed in magic, perhaps the deep desire to cause no one else pain; when I would become convinced that all the world would be better for my absence, I would make my plan and set myself a 24 hour waiting period. Death was already real and permanent to me, a regular part of the family and libraries were my internet, so how knew how and where to cut and that I would be off in my woods even then seeing a possibility of then being of use to the crow and coyote. I would make my plan, write the entry in my diary to say goodbye, set a circle and talk to the earth, fire, sky and ocean, truly not knowing how deep a call through history that might be, tell me I would ask if this is the right choice.

In eighth grade Carla answered that question with a pair of jeans, The day before some of my classmates had given me a gaily wrapped present of dog shit and mouthwash, inside the jolly Santa Card were the time honored classic of “Die you ugly piece of shit.” Well to a seriously depressed teen-ager that was more of a directive than an insult. I set my circle that afternoon, out where Zack and I would go to do our best thinking and talking. Mind you he had long since crossed the rainbow bridge but when I was there in that circle, I could feel his fur beneath my hand, his tongue clearing the tears from my cheek.

That morning the razor blades were neatly taped down onto one of my text books under the paper bag cover and I had told my parents I was going to be helping someone for whom I often babysat.  The stage was set. A girl in my class, one of the cool girls in fact, blonde beautiful and smart brought me another present. I was honestly afraid to open it. Afraid to be again surrounded by the laughter of my home room and consumed by the shame of thinking that I had actually recieved a gift. Charlie Brown and I had a lot in common when it came to Christmas, Valentines Day and Birthdays. 

Inside was THE pants everyone cool was wearing, from D&L, a store I didn’t even consider stepping into let alone shop new. Brushed cordoroy hip huggers with wide, wide bells. They were simply the most beautiful thing I had ever seen. I immediately put them on, and I wore that kindness in one way or another for the rest of my life.

I am glad she was there that day, unaware of how big a difference her not so small act of kindness would make. I think of all the ripples of that one pebble tossed – my children, my patients, my foster children, my helping others go home. Of the ripples I know her generosity has reached as far as Africa, Vietnam and Guatamala. These are just the obvious, but we can never know how far our influence for good reaches.

And other lives aside, I am grateful to her,  I would have missed so much awesome. Perhaps that is the big thing that has changed in me. That emptiness inside has long ago let me go, and today even the chair hears me. 

Carla moved in high school, so I did not think I would ever get to see her again, one more circle I could never close. 

Then I was at my high school reuinion, feeling a bit of that outsider at 17 I was at graduation, and there was that face.  45 years ago that heart and smile had heard my cry of “I Am” when no one else was listening. I looked at her face, blurted out no hello just her name and  “I think you are the girl who gave me the pants in eighth grade.” I watched her as she reached for the memory and all evening I felt that same compassionate heart.  Frequently she saw me in the crowd and came over and hugged me, I often retold the story of her unexpected RAK, sanitized of my drama.

 I watched her exuberance and joy throughout the night. She was the first to invite me and my walker up to the dance floor. And it was her husband that drove me back to the Parker Palace that night, not an uber. 

I am thrilled to say that thanks to Carla I have had the opportunity to change much in the four decades between our hellos and goodbyes. But I am equally gratified to see that in all the important ways, Carla has not changed a bit.

It is never to late to heal mental wounds but totally hoping I don’t go off the rails, more interested in moving safely down the rails. But I am listening to my Train mix: The engine led not the Patrick Monohan led one. However, maybe Crazy Train is a perfect lead song for my first blog on an adventure some have even called fool hardy under the circumstances.

I have always said the only difference between courageous fortitude and foolish stubbornness is whether you agree with the goal. So my dear friends and readers, I hope that by introducing you to all the goals I am chasing on this one little adventure you will join me in spirit and see me as strong and brave, with only the kind of foolish that lets you laugh with me, not at me.

and there are lots of things to laugh at these days, pratfalls, puns and moments of pure innocence (since memory is required for guilt to exist. ;P)

Just posting a blog or FaceBook entry these days takes the same concentration as researching and composing a news article or writing a short story, but Iwill do my best. So yeah, my communication challenges may introduce some unique turns of phrase, but listen to my heart and you will probably land somewhere near the point I am passing.

Tonight I am sitting in Flaggstaff at a dear friends table typing.  My feelings are ranging from excited to nervous to grateful, because I am about to complete three of my current 20 Wishes.   I am about to take a long, long train trip because well, I love trains, I love travel, I love scenery so “Train Trip Across a Continent” is on my list. I want to go home to Connecticut and reconnect to a few friends, visit my mothers grave, close a circle, heal a wound or two and pull some frayed threads of who I was back into the weave of who I am now. Oh, and attend one high school reunion.

But its not just the goals, or the destinations, or my love of new environs for my RAK’s. Its about challenging myself, even as who I am becomes daily less familiar. I look forward to also blogging about what it is like to take this train trip with my walker, anxiety issues and occasional memory dumps.

Took way too long to write this and bet there are at least three misspellings and errors that would have brought out my old grammar nazi but even if practice won’t ever get me to perfect, Iam still having fun. So will post again tomorrow.

Be well. Be Brave, Be Kind and most of all be able to laugh at yourself.

NanaJo

 

 

 

 

 

Once upon a time, a long time ago, something terrible happened that sent my whole world crashing down around me, the aftershocks have resonated in my life for 47 years.

Today I got official recognition and as close to an apology as the US Navy is ever likely to give me.

Doesn’t make it better.

But I feel a lightness a half a decade coming, and I have been tearful off and on all day.

 

 

 

 

 

 

A Parable

The old woman sat rubbing the lace on the edges of her lap quilt. Her eyes saw much that was not the children gathered at her feet, and she began.

“Once Upon A Time there was a wise and wonderful teacher. His words were few, but those he spoke were replete with compassion for all life. One hundred good deeds for every word spoken was his guiding principle so his disciples were few, in spite of his fame and his country’s high regard. Even the Emperor honored this man and yearly sent offerings across the wide blue river. Baskets of fresh fish, jewels, soft cloth, loaves and bright fragrant fruit of all description came always with a well worded invitation to travel to the capitol and teach in the courts.

The Master chose for his home the most barren part of the kingdom. Rotting buildings and rutted roads still paid homage to when it had been a trade center surrounded by fertile fields, and fragrant woods noisy with the calls of birds and animals. Three generations of over planting of the wrong crops, rotated at the whims of the wealthy class tastes instead of the needs of the earth, over hunting of both large and small game, the felling of trees without replanting, and the general neglect of those who farmed, chopped and slaughtered the many exports had left the population as crippled as the peninsula’s resources. Then the Emperor’s city finally spread its lavish hips to the ocean’s edge, and even the port closed.

The jewels were returned with the invitations to court. The fine cloth was sewn by his and others hands into shirts for weathered backs while the softest bolts were used to wrap for the few babies still born, and those too old to do much but smile and reminisce. The fruit and the loaves were distributed, the fish were roasted and stewed and shared at community fires of old stories and songs, while the master sat happy and smiling, slurping a bit of steaming broth.

The Master was so kind that he would weep for and make an offering to the souls of the insects his worn boots had crushed inadvertently during the hard labors of his days. Many a mouse family un-housed in the matted tufts of the fields grew to adulthood in his humble walls fed on loaf ends and apple core.

One day the old teacher decided it was time he pay proper respect to the benefactor who had kept his friends and families alive these many years; it was time he travel to court and share the truths that brought him such great happiness with the kind king. He woke that morning and readied himself for the journey, though that was a simple matter of tying his offering bowl, and two days provisions in cloth and choosing a walking stick from the weathered ghosts of trees nearby. The river was two days as the crow flies and five by the road, and on the other side of the river a city whose beggars ate well compared to what he was used to consuming.

He chose not to travel alone, but since no more than two pairs of hands could be spared, h e took only his youngest disciple. This follower was a promising young woman who had come from the courts to follow him two years prior. The trip would also give her the opportunity to pay respect to her parents and ancestors.

As they approached the river the trees grew greener and older, the roots so deep that farming was impossible, their branches hung with vines, their only fruits shone invitingly, As the girl reached for one, the teacher stopped her. “Note,” he said, “the animals do not eat these, neither should we.”

“Ah,” the girl said retracting her grasp, “Poison!”

He nodded.

“I heard,” she said, “that there is nothing left here by the river but that which, stings, bites or poisons?”

“Yes.” was all he replied, than began searching for a rope to use to help the tie the young girl high on his back while crossing the rushing rocky river for he was a very strong swimmer and she still sleight, her body so new to hard labor.

The Master finally found one that suited him but as he grasped it, the rope vine opened its eyes. The man dropped the serpent and stepped back quickly.

“Wait,” the wily snake called, for it was not a rope vine at all but a snake who had lived since the times before when game came to drink here, and meals were easy. He refused to chase mice and work hard like his brothers now did in the fields. So here he stayed in the tree growing fatter and lazier and more crafty. For many years he had eaten a man or two a month , and lived by tricking the odd river traveler or the fat and much more delicious couples who came below this tree’s boughs to sneak kisses.

A tale had grown in the city of a hungry ghost who devoured all that came near the tree. As those who disappeared were those rich enough to afford daytime leisure, others said it was divine justice, and even others claimed a curse had been wished upon the wealthy by the poor. The snake did not care which story they believed, where once the fame flattered him, now it meant fewer couples came, and the snake was hungry. “These two travelers here” he thought “are so thin that they will barely make a meal if eaten together, but here they are” and so the snake hung his head and gasped as if it was his last breath, stretching himself as long and thin and pitiable as possible.

“Wait!” he called again, “Please save me!” He gasped, coughed, fell to the ground and wailed, “Oh please, at least tell me your names that I may know the last faces my eyes will ever see.” He closed his eyes and managed what he always felt was a quite convincing imitation of a death shudder, then blinked his eyes a bit and whispered hoarsely, “and they are such beautiful faces, please tell me your stories that I might die while listening to your epic tales.”

Thus he had tricked travelers before, with flattery and offers to speak of themselves and their lives. For most humans, this was more than adequate bait. The snake would listen with proper intermittent sighs and whimpers as the man or woman would wax poetic on their conquests and tragedies. Slowly, and ever so slowly he slipped his long silky coils about the bodies of the tellers, until bored with all the talk of them and not him, he would squeeze until the words stopped and he swallowed them whole. These two humans were much different than any who had come for dinner. They neither moved closer to him with curiosity or spoke. The man merely stared at him with the kindest of eyes. The deep light in those eyes made the snake hunger for the taste of something he barely remembered from a happier time.

Their eyes stayed locked as the girl continued the search for an appropriate vine.”Master,” she called, “How about this one?”

“She called him Master,” The serpent felt a new kind of awe and desire as he realized before him was the great teacher of happiness of whom he had heard from many a previous meal. “I must taste happiness again,” he thought, and a new plan formed.

The snake resumed his natural length and breadth, his voice spoke now with its natural timbre.”I am sorry for my attempt at deception. I thought to trick you into inattention and then eat you. But I see the happiness in you, and I wish more than anything to be happy.”

The master said nothing.

“I am a fast and strong swimmer,” the snake now continued, pouring all is desire into his words, “I will gladly carry you both on my back across the river, but first master, you must teach me to be happy.”.

The master nodded, sat down beneath the tree and began teaching the snake. A day and a night and a day passed with the snake repenting vociferously of his evil ways while the young girl wept with his sorrows and sang with his joy of unburdening. Finally the Master, having spent more than a years labors of words teaching what he knew of service, compassion and happiness, stopped talking.

“As my first service I shall carry you both across this river on my back,” cried the snake with tears of gratitude pouring from voice and eyes.

“No,” said the teacher, “you have just told me many stories of your taste for humans, and though I believe your repentance is real, I cannot risk another’s life, you will only carry me and then I will attach the vine to a tree on the other side that I might more easily bring my disciple”

“If I cannot carry you both, then I will be the rope.” the snake cried with even more sincerity. “Whatever pain it causes will only bring me joy of service, please let me be your rope.”

“I honor you as the rope that will save me,” the girl cried throwing herself upon the serpents neck as their tears blended like lovers, and she wrenched the vine from the teachers hand and through it to rush away with the river.

The teacher grunted and climbed atop the snake. His grabbed grabbed tightly to the arched neck, trying to only hold hard enough to stay on, but light enough to cause no damage to the serpents scales. The snake was still singing the masters praise when halfway across the river he dragged the teacher into the depth of the water to drown, and ate him.

The girl screamed and ran back towards the village crying. The snake returned to bask on the river bank, digesting all he would ever know of happiness.”

The storyteller paused.

“Is that all?” a young voice queried, “If so,it wasn’t a very good story.”

“I am afraid not,” the woman sighed, leaning back on a slightly blackened chair, “I wish it was.”

“Many years later,” she began again, “after the girl had herself become a great teacher…” Her eyes again seeing the past and not her audience.

“The storm that hit in the girls 50th year brought little rain, but much in the way of thunder and lightening. Just as the sun was setting on the first night of autumn, an unthinkable disaster occurred. Instead of striking the tall metal poles placed to catch it, the lightening struck a bone dry field and would not be contained.

Led by the newest masters disciple’s, all the regions families poured onto the main road seeking to cross the river, and safely flee the fire. Carried by the very arms of earth’s compassion, and inspired by their own desire to save each other, the journey-time to the bridge was more than halved. The bravest of the regions men fought with soaked blankets the first licks and bites of flame as the slowest families with children and those with the infirm on their back began to cross. Then came the mice and other such animals as still lived in the fire zone and finally the last to reach the bridge was the master.

Of course by then the planks and supports were being devoured outright by dancing red demons, the air filled with shouts and smoke and flame. The master stepped onto the bridge, and then stepped back just as quickly, feeling the skin seared from her cheeks as the middle of the bridge and few vermin crashed into the tumbling waters.

A plaintive voice called out, “Please help me and I will help you, or we will both die in this inferno,” The master turned to see a very large, very old serpent slowly pulling himself towards where the bridge had been. “I slither slowly at my advanced age, but I swim quickly. Let me help you so you can help me”

“What help could I be to you?” she asked, “if you are such a swimmer as you say?”

“I can no longer see or smell with this smoke, I cannot find a place to enter the river, come close and throw me in and I catch you with my tale, place you on my back and then carry you across.”

“No,” the woman said, “I am sorry, perhaps another would have, but I will not.”

“You must help me,” he pled,”I swear on all that is holy that I will not harm you, I am a disciple of the same teachings you follow, I know you must help me. It is your sworn duty.”

“I choose not to help you.”

“But without your help I will die, please save me that I might also save you. Oh, please,” he begged, “Do me this honor that I might honor you as my salvation.”

The woman laughed, “You do not recognize the girl of 10 I was then, but once I honored you as my salvation, thinking you a rope. But that day you opened my eyes, now I see only snake.” She looked at the snake one last time, “Now I take my chances with the fire and the river.” And the new master dove into the milieu of burning wood and water.”

The old woman stopped speaking, her fingers resumed their scritchy rhythm against the lace on her blanket.

“Is that the end of that story?” the small voice most often heard at any gathering piped up at the long silence. When the woman did not answer other voices joined the first.

“I don’t understand, what happened to the snake”

“He died of the fire of course?”

“Is that story true?”

“Was that the right thing for the master to do?”

“I truly don’t know,” the woman said to herself, as scarred hands touched her disfigured face, “But I am here and the snake is dead. And every day for a year I honored the snakes memory, as just what he was, a snake.”

Today a gentleman friend wisely noted that the greatest challenge to our value and identity comes not in the beginning when we are still fighting and figuring out who we will be when we grow up, but comes when the tide has turned and the waters of our life are receding.

Who are we really, when we have more memories than dreams? Who are we when our children and community are too busy to make time for us because they see us as non-essentials? Who are we when our skills are outdated or our bodies no longer capable of tasks? Who are we when our words are too slow or jumbled so our voices are ignored? Who are we when our bodies fail us and the first two things we learn to control as children, intake and output, are dictated by weak bladder muscles, swollen prostates, neural damage, diabetes or a heart condition? Who are we in a world where value is measured by all the externals of beauty and career success? Who are we when we are alone in our bedrooms with no job to get up for, no spouse to hear snore, nothing or no one who really needs us anymore?

If I have learned anything in the last seven years, it has been my own version of that truth.

It has actually been longer than seven years that I have wrestled with serious illness, but surgery, medication and more surgery bought me almost a decade of normalcy. Then it was another five years, then three and then the miracles of recovery and therefore the gaps between grew smaller and shorter. The last few years have been like driving down the eastern seaboard with the last light of one health crisis barely lost in my rear view mirror when the flashes of the next round of tests and treatments would  appear in my windshield. This last half of my fifties have been hard.

Luckily my childhood adolescence was no family sitcom, and what my Father knew best would still be censored on all but Cinemax and HBO, so I was a bit more prepared for hardship than a sheltered well fed child of privilege. I already knew how to live on a prayer and still have a song in my heart. I already knew that it wasn’t what I had but what I could do for others that really mattered. I had a high pain tolerance and knew that anyone could leave at anytime. I never remember a time that I believed the world was fair, still I believed my life story would always have a happy ending.

I worked hard in spite of illnesses or setbacks. I did my best for my children, my friends, my country, even strangers. By 55 I had completed everything on my 30 something bucket list including traveling the world and my dream job- nursing.  After a lifetime of meandering different paths with a compass of compassion, I even found my spiritual direction. I skillfully surfed all the ups and downs faced be every great protagonist right up until January, when the story forever changed.

And here I am now, the tide going out, while I try to swim to shore, or at least remember how to float.

I fell twice today and I am looking for a place to live without stairs and someone to check in on me. I use a walker and shower chair and constantly forget what day it is or what I was just doing. It takes 10 times as long to write a blog entry and I have learned to save each paragraph instead of 5 pages at a time. Where once word predictive software was irritating, and grammar prompts annoying, both now are necessary. What is in my mind doesn’t seem to want to come out of my mouth or onto paper. And sometimes , all that is in my mind now is a nice billowy cloud of float.

The toughest part for me is figuring out who “I” am as my “I” fades from my cognition as surely as sight does with glaucoma.

But the second toughest is the insurance and finances. I worked hard. I always paid taxes. Social Security payments came out from every check since my first job in 1973. I had long-term disability insurance, and I am a veteran. So I thought I would be OK at this age. But I am not. I fell twice on the stairs today because I have No money to buy a four prong cane so I just made do. I hate needing help, but even more, I hate asking for help.

I thought that getting to be an adult, working just as hard at the stop-gap labor as I did at the job of my dreams, being a good person, meant I would never have to be here again; Here as in my growing dependence on the kindness of others. I really thought that this time this year I would finally be hiking the AT in solitude all strong, Ms. Independent.

Actually, there were a lot of times I didn’t think I would ever be this age so I am grateful for every moment I still get to have, however I’m certainly much too young to be this old. Guess its like Indiana Jones said, it’s not just my years, it’s my mileage.

I have saved other lives, strangers as well as patients. Yet here I am, going to doctors, fighting with insurance companies and begging on the internet.

What a life. Still, I believe this life will have a happy ending.

“They used to tell me I was building a dream
And so I followed the mob
When there was earth to plow or guns to bear
I was always there right on the job

…..

Once I built a tower up to the sun
Brick and rivet and lime
Once I built a tower, now it’s done
Brother, can you spare a dime?”

I have truly received far more than dimes this last few months. From strangers and friends and family I am lifted up again and again. When I forget, they remind me who I really am. A thousand hands handing me love and a lot more than a dime.

Morning: Father’s Day 2017

I want my life back.
The one I had before the painful jerks and cloudy mind.

I look for it in the finger staining pages
of the morning paper, but lose the story
In a smile of pushing our new silly putty onto Annie’s Face
Me, and my sister
But then the pages shake my hands from peaceful reverie into realization
I do not recognize the faces even in the funnies
Except Blondie.
I read it twice.

I want my life back
when mind didn’t shake like my leg
and when clear moments weren’t riddled with holes of knowledge
and the truth of another cloud to come
which I will meet as unprepared and unexpected as the annual monsoon

I want my life back when I held babies
Cooing and comforting as I changed the evidence of functioning bodies
Teaching parents that even the tiny and very sick love to hear music, even badly sung
And that touch
And connections help,

not break us.
I want my life back
As I struggle to pull on my padded “like hell it looks normal” panties
From the package with the tennis playing model smiling back at me.
Looking forward to seeing my small grandchildren, who still run smiling to hug me
To young to be frightened of my reek of vulnerable mortality.

I want my life back, I scream inside my head,
with each, “Oh I’m fine.”   Because only the patient few will play the verbal charades I now call conversation.

Is this my life.
This old woman with dull, tired eyes staring back from my mirror? This person who must check my daily grooming list so I may hide the shredding concentration

delay the time that others control
Even this.

My eyes flick left to the picture of my Ethel to my Lucy.
As a FaceBook prompt tells me I have a message.
I keep my lists on my phone
I forget too often
Knowing full well it is time to stop pretending and print them
And post them on the wall.

I stop,
Relax onto the toilet
Letting the cane lean on the wall
As I look at posts of men, my sons and friends, smiling and holding the hands of the future.

I have my life.

Even this,
This is my life.
And I will live it
And sing it
And breathe it
And celebrate it
Even as I am pixilated out to the final credits.

J.M. de Biasi aka Crowfae

I love warblers and these old Jazz and Blues more and more each day. But I gotta say, I feel less and less like the lyrics apply to me. Nobody doing me wrong. The people in my life seem to love me just the same with or without money. So I have been trying to break up with these great bass lines, dance inducing strings and bubbly brass, but I just can’t call the whole thing off, so one more time Ella and Satchmo are getting me through another evening at home. So with their help…..time for an update.

Actually my site statistics tell me that I a past due for an update and once I am done here I will be heading over to my GoFundMe and updating there as well.  life

Making an updates isn’t easy, I have now typed and deleted a half-dozen starts.  Everyone has been very kind to me, as always. My rent is paid, I have food, clothes, friends and lots of time to enjoy how good my life is right now. The GoFundMe got me through to my first insurance temporary disability check and now we are working as a team, my doctors and I, to see if there is anyway to keep this a temporary disability, even while preparing for the fact it might be permanent retirement.

Cardiologist placed my new Medtronic friend a week and a day ago and I am healing well. I am continuing to follow-up with VA Mental Health because not only are all these changes the kind of stress that triggers my PTSD and depression, but also some of the symptoms can be the result of or exacerbated by anxiety. We don’t have a definite answer as to what is causing the fainting, the falling, the expressive aphasia or memory issues,  and I am all for ruling out anything that might be treatable along the way. We are not unaware of the un-treatable options, but as long as I am still able to write this blog, I still have enough of my cognition left to make a contribution, and so gonna keep checking for other things. But what we are aiming at is more of holding my own than getting it all back.

What do I mean by “all back”, well I haven’t made a single 100 point word in Words With Friends in 3 months, I used to make them about once a month. I saved them for the games I played all out with Kevin and Cathy and Matt or I could have made more a month. I only win games now when the letters are all in my favor and my words are under fifty points, find myself smiling at thirty point words.

What else do I mean by “all back”, directions have never really been my forte, but I  have to use GPS ALLLLLL the time now, putting in where I am going before I leave and when I am supposed to be there.

Sometimes it takes me a few minutes holding a semi-familiar object to remember what it is and why I am holding it, and of course the old familiar, “now why did I come into this room?”

But the worst two parts are swallowing and talking issues. I can’t find words or say the wrong one, and soft foods and soups are my very best food friends.

Yes, hard to believe this I am sure, but I do my share of bouncing between catastrophising and ignoring reality. I have some awesome work sheets I do when I already have myself drooling in a nursing home or thinking that I just need to find the right magic thing to make it all go back to my old normal. The writing helps me back to reality. I still some very flat, beige days and lots of inconvenient crying when someone asks how I am doing with all this. But all in all, I think I am doing good.

So short summary,  I am not dead yet, in fact I feel happy.   I think I will go for a walk now…..

I have seen your face and it’s too much too much for me.

Trouble oh trouble can’t you see you’re eating my heart away…..Cat Stevens

So here are the newest medical updates: I have another Echo next week followed by my game plan appointment with Cardiology. Marvin the Monitor is headed back to relay all his not already recorded info if any into the BIG computer which will then be compiled with all the lab readings, exams and general inspections into a fifty page report that can be aptly summarized in these words, “We don’t know, but your symptoms are……” Just kind of kidding but as patient and as medical professional I am acutely aware medicine is an art not a science.

At least that is the way it is looking to me.

Non-pro-dromal Syncope is my only new diagnosis. Sounds pretty fancy, huh? Means I fainted without warning. Already knew that when I woke up on the sidewalk, lol.

My heart has beat to its own drummer for awhile so that is not new to anybody, I guess in two weeks I will know if it can ever be made to step in time or if it’s gonna just keep making its own kind of music. In the meantime, I am a kite without my tail waiting to go back to the job that defines me.

My medical answer bank is empty. And, as of last Friday, my bank account is empty.

My idea box, my heart and my gratitude lists are all full to overflowing.

So my rent of $450 is due today, car insurance of $75 and cell service of $50 (Verizon prepaid card) are both due by the 7th  and I will start owing Cash One on Feb 10 to the tune of 50$ a week. I took a title loan because it was something I could do to pay off a settled medical debt that would have all its fees return if I missed payments. I realize that as soon as I am back to work or receiving disability that will be my first pay off or it will be an expensive decision.

So things I have to offer:

I bake, knit, crochet and sew: actually pretty well. I am willing to swap any of my aforementioned skills for donations. I can also write a mean sonnet, play the bass very badly, and adapt dolls to fit their owners.

Pretty sure those last three aren’t in high demand.

But anyway, this is the hard part for me, asking for help.

I will be happy to pay it forward, trade what I have in skills or possessions to meet my responsibilities.

Accepting help makes me vulnerable. But that is where I am today.

If you donate please specify where you want your money to go and I give my word that it will.

Categories are as follows: Daily living – rent, car payment, etc.

 Skin We’re In Makeovers – these are the dolls I adapt for children who have wheelchairs, a tracheotomy, a g-tubes, AFO’s, skeletal or muscular differences, and/or other attributes not mirrored in popular toys. I generally use Build a Bears and 18″dolls but have done action figures and fashion dolls. Each toy from start to finish can consume 40-150$ in parts and supplies. The smiles they produce are priceless. Representation does matter to kids.

     My 20 Wishes List (aka Bucket List)

To be discussed in detail in another post.

I will tell you that I have had in the past, and still have, the best friends in the world in my life. There is food in my fridge and cupboard, lots of comfy clothes in my closet, love all around me, peace in my heart when I first wake in the morning, and oh yeah, I have my bus pass, and a plan.

I thank you in advance for any help, signal boosts and comments of encouragement are also help, not just the spare 10 or 20.

And now I will sleep, I had to catch the bus while it was dark this morning. To all the morning commuters who do this daily as part of being ecological, part of their small economies, or maybe like me because of their health, I send any merit I have earned today and salute you.

I may miss my car and my job but I still fall asleep safe, happy and above all grateful.

Ok, obscure U2 reference actually related to how surrounded by love I feel juxtaposed against how badly I just want to run away from my life. From politics to personal, it is the best of times and the worst of times. So, of course, I decided to watch the Doctor Who (Hartnell) story thread “Reign of Terror” because I thought at least there I know how it ends.

The song I quoted at the beginning is “Redlight” and one of my favorites, also love “Song for Someone”because there IS a light that I won’t let go out.  These songs were my first two “pulls” in a musical augury, the cover and the cross. They make sense.

Deep past was “Kiss My Country Ass,” took me a bit to realize this was symbolic of my like me or leave me alone attitude that has always been my weakness and strength. Recent past is “Oooh Child” which is important both from the soundtrack it is off (Guardians of the Galaxy) and its message of someday, things will get brighter, just not today.

My possible future is “C’est Toi Le Plus Fort” by Edith Piaf, immediate future is “Spy” by Shakira. Ummm, yeah, both are truly about a woman letting a guy be kind of a jerk and still loving them. But I think they are about my current quest to care for those who are harder to love, my practice of Boddhichita, and my work that always takes more than I have to give and leaves me soul tired, until that one moment when a baby does something thought impossible by its doctors.

To add to that reading of those songs is my self song which is the lullaby by Tanya Goodman, “I L.O.V.E Y.O.U.”

Others goes out to my sister, “Feed the Birds” is both a great theme to how a treat all life and a song I will always associate with Diane. I can see her singing it to herself on her bed in the purple bedroom while we play paper dolls. It is also a song about listening to and seeing  little things we miss, my word for the year is “attentive.”

Then comes hopes and dreams and what pops up but “All Night Sleeping Song to Help You Relax” from the zen music garden. Sleeping is both my hope and my fear, my blessing and curse. I take my top plate out at night so I don’t crack it and I have bitten my gum line ragged and bloody. However hard it is to go to sleep and stay asleep, getting out of the bed in the morning is just as hard.

Final Outcome is Johnny Cash’s “Flesh and Blood.”  I hear two messages here. One is pretty basic, I still need people, the other is that love is our only true legacy.

Musical augury is simple. I ask the universe what I need to know, then I turn on my kindle or Ipod, bring up songs and hit random play. Then I use the songs in the order of cards placed in a Celtic cross spread to listen. Try it, and really listen. Actually anything can work, if one is willing to look and to listen.

I actually did this reading/listening because as soon as I sat down to write my thoughts scattered like children on housecleaning day.

It was a hard day. Not for any new particular reason but because waiting always gets harder the longer we do it, and because friday is creeping closer, and then Feb 1 and I don’t yet have my ducks all lined up with my answers on their bills, in fact my pond looks pretty empty right now.

On the other hand,

I got out of bed all on my own, showered, dressed myself, brushed my teeth, made myself coffee and breakfast, knitted, walked, talked on a cell phone…….so far the level of my gratitude is far above my level of fear or want. I am one lucky little old lady.

BTW, thanks for the PM feedback, but is there a reason no one comments? I only ask because I am not that savvy and wonder if I made a mistake building the site.

Anyway, thanks again for the love and support y’all.  Time to say Good-Night.

I know change is a bad thing,
Breaks me down into a sorry sad thing,
Not some iridescent grateful butterfly
I’ll resist with defiance
Not the power of a mystic silence
I will fight the dizzy spiral of goodbye

And it’s alright, it’s alright, it’s alright
It’s alright, it’s alright, it’s alright

Dar Williams – It’s Alright Lyrics

So I guess I better write a blog since I have had so many people looking for answers I have not yet posted. I am guessing that is the source of my sudden surge of readership.

It is either that, or everybody just decided they need to learn my lemon curd recipe.

Awesome stuff first.

This Christmas thanks to many acts of generosity, and unexpected connections with a couple other agencies that serve children, “The Skin We’re In” delivered 14 eighteen inch dolls modified to reflect their new friends reality. We also did about 2 dozen adapted Build-A-Bear’s. It was FABULOUS!!!!! Thanks everybody who helped. I have also completed a couple of interviews for the grown-up’s book, hoping to raise the costs of two shoots so I can have a real sample with photos as I “shop it around”.

If you want to learn more about this particular passion of mine, I hope to have a few videos up soon. Got a Go Pro for Christmas and the old woman who I am, still mastering its use.

Also each doll from start to finish costs anywhere from 40-100$ in supplies (including doll, clothes, wheelchair if appropriate, AFO’s, Trach, etc.) If you want to donate to this effort please note this in your PayPal donation.

Awesome, right?

The next part is less awesome, but not really bad, just change.
I was leaving the Chandler Mall and had an episode of sudden and complete syncope. I “went down like a rock” said the gentleman who witnessed it. I am no small woman so split my head a little and created a lovely goose egg. I spent 3 days in the hospital while we ruled out the usual suspects like a pulmonary embolism. Doc says there has to be a reason.

The long and short of it is I am currently wearing a cardiac event monitor and cannot return to driving or working until the 18th of February at the earliest. I feel well enough to be going a bit stir crazy, so all in all, I am fine.

I need to make about $1200 dollars magically appear to keep all my bills like rent and insurance paid while out of work. I am applying for disability but that takes time, so if any of you faithful readers want a lovely knitted anything, or perhaps a jar of fresh lemon curd if you are local, or any other time based service I can provide in exchange for a donation, please PM me on FB.

Shoot I will even take just straight donations with the understanding that as soon as I am back to work I will pay it forward again.

The true irony of this was that I was so very close to catching up and paying back the three personal loans that haunt me a bit, and even reinstating a 30 day bill cushion. Hey, lucky for me, after co-pays, etc. I am actually at zero balance this hospital stay WITH rent paid, phone service and groceries, at least until Feb 1

My word last year was “solvent” and I almost made it, but hey, everything is alright.

No failures in my life just learning opportunities. Better things ahead, always.