Life with Pain

    They started when I was ten years old. The pain was like a branding iron through my neck into my skull. No escape. Initially doctors said children can't get headaches while I curled into a ball and tried not to exist. No physical cause like a knife or a steel trap to remove. No healing that signifies the end of suffering. My father gave me imitrex from his prescription. Sometimes I could understand why he was mostly emotionless. Emotions are a luxury you can't afford when pain controls your nerves. 

    By the time I hit my twenties I'd become adept at appearing functional while feeling sharp, white hot waves of torment and nausea. You quietly excuse yourself to vomit. Drink two pots of coffee. Eat Tylenol, ibuprofen, naproxen like you own stock. You count the good days when there's no pressure or pain carving out your skull. There is no escape. You contemplate whether it's really worth it to live. Why do you have to survive like this? Who thought it was a good idea to genetically reproduce when this relentless genetically induced torture lies like a dragon in your nerves?
    The neurologist wasn't surprised to meet me. He'd treated most of my father's side of the family, generations even. He went through the motions, tests, and MRI finally. In black and grey my brain looked like a wrinkly brain, perhaps to a knowledgeable eye there were things to see. He offered drugs. Drugs to hide symptoms, drugs to wear out other systems or make them reduce function. My brain goes too fast, it's constantly on and taking things in, anticipating threats, obstacles, stressors, and trying to find an escape before the next time the Dragon bites. The neurologist explained how my family has a flaw. The trigmental nerve is supposed to run parallel to the blood vessels going into my brain instead they circle each other like two enemies hell bent on destroying each other.
    Instead of his pills I chose to learn self hypnosis to try to master my body. Some days I win. Some weeks are pain free like a reprieve for a dying convict only to wake because hot angry lightening is reverberating through my skull. In those moments I think of what a burden I am, how much I love my friends, how thinking of them distracts away from the agony.
    Logic goes out the window, spoken words are torrential rain pounding into my ears without meaning just pressure. I have to form words and thoughts carefully, move like I'm going to explode as sometimes motor skills drop to the level of someone who's drunk. Hours pass, ebbing and crescendoes in the pain are unpredictable. I can look normal, sound normal and get by through it. I can't always recall things clearly afterwards as the focus it takes to function takes up the space memory would occupy. Normally my memories would be like a library, each area different books with pictures to recall specific facts, experiences, or trivia instead for the five to six days of pain there is chaos. One episode left me with a memory of pain, a cabin at a camp, uncomfortable bunk bed, and being asked repeatedly "what causes them?" Like being in Guantanamo and being questioned, all I could say was "strawberries can cause them." Strawberries have never caused any of my headaches. I've been allergy tested. Not allergy related.

    Chiropractors help sometimes to reduce the long endless stretches of furious nerves and muscle rioting. I remember many years where I had less than one good day in ten, good years where I have a hundred good days out of three hundred sixty five.
    Your priorities are different when you live with Pain over your head and in it. You live for the good moments, savor the good feelings and moments. You capture them, wrestle them into your grasp and break apart obstacles for the priceless moments of beauty, kindness, and love. You listen to birds, crickets, waterfalls and rivers. You don't care about looks, makeup, perfume, fashion. You don't like wasting the good moments with pettiness or conflict. There is enough conflict in your head.
    You rationalize, you beg your own mind for reprieve, you try barter. You try. You try. You end up having to stop taking NSAIDs because they've wrecked your digestive tract. You stop caring about laws when you find hash and cannabis with high CBD content cut the pain down to where it isn't a demon you contend with for control. The world doesn't look two dimensional, sounds stop being too loud and knife edged. Hypersensitivity in hearing, touch, vision drop back to human levels.        My mind always wants to understand why I can only have negative impact hypersensitivity, shouldn't I get some compensation? There is none. Genetics does not care. It is relentless. It's written in my bones and blood. A myofascial dentist who practiced for over thirty years said I was the only true case of migraines he had ever encountered. There is a point where you can touch an end of the trignental nerve above your upper gum line. When he touched mine I flew out of the chair. Electrical shock lashed through my brain. I choked, gasped and shrieked. He apologized and had his aide get ice. Temporary cure: put ice on your neck or upper gum line in front of your molars. In about twenty minutes the pain will decrease. It may or may not go away, it may lie low until you think it's gone only to rise up just as wicked as before.     A lot of things get labeled migraine because of symptoms. It's a catchall for headaches on one side of the head. I've blacked out before. I fight them sometimes. I forget that makes them worse. I have a hard time conceding to squiggly blood vessels and nerves with no IQ of their own. Nothing more humiliating than to lose to your own thoughtless tissue. Might as well have defective tattooed on your forehead.
    When you live with Pain, you have a hard time connecting with others fully. You feel for others and you try to reduce their pain, you know you can handle it and you don't wish it on anyone else. You shut off sensations in your body and learn to ignore them until they hit the wall.
    A friend once asked why anyone would choose to live in pain. It's not a choice. It is. Choosing not to live would be admitting I'm not as strong as my genes. Many days I wish I wasn't born, I'm grateful for the good moments without pain but there's always the lurking enemy waiting for stress, muscle pain, nerve flares to give it the tools to overtake me again.
    Emotions play across like shadows on the ground, not like ocean waves. They have little depth but stark appearances. It's hard to feel beyond the hot biting dragon curled around your spine, knowing there's no song to put the beast to sleep.
    This week I've started acupuncture at a sliding scale community clinic, Nadia is kind and gentle. She plans on using a technique called cupping to draw the coils of the dragons tail out. When I travel, she's encouraged me to continue treatment as it's likely five or six sessions may be needed. My friend Tama does acupuncture and said they've had many cases like mine, where they've pinned the proverbial Dragon down. I'm done wanting it dead, it's a part of me, I want it to heal. If they can do this it will be the best gift I've ever been given. I'm thirty nine. I've suffered for twenty nine years. I'd have done less time and had less pain if I were in solitary confinement for capital crimes. My only crime was being born.
I     run through my days, drinking sunsets and friendship. I pause smelling roses, Ben gay, and Dragon balm. I feel the Sun, the warm hugs and the touch of friends as they endlessly try to work the muscles out. I memorize the flowers, the antics of squirrels, the soft playful nuzzling from my cat. I wrap my hands around life I draw it around me like a silk scarf in the breeze. I try to laugh. I challenge constantly, hoping the next hurdle will make me well enough to heal the dragon and put it to rest for once and always.

    That's what life is like with chronic pain. Forty hour weeks aren't possible. Desk  jobs aren't realistic. You do what you can when you can at a hundred percent. You can bluff your way through a few hours, even days. You can survive. That's it sometimes.

    If you have someone with chronic pain in your life. Share the beautiful moments. Offer massage, hugs, laughter. Take them places that draw them beyond their hurt. Give them foods that distract and nourish them. Give them memories worth fighting for. Forgive them and understand why they don't always talk about it. We don't want pity. It doesn't help. Don't treat us like we're glass. We're diamonds. We cut. We may cut you, lashing out at our inner demons. I apologize. I may be elusive. Distant. I'm facing monsters you can't see in my smile.

Going Places from Public Transportation to Thought

My life has become points on a map, appointments and landmarks, roses and signs. Signs telling me where to go, how fast, when to go, what to do.
Still having visions of a bouncing, spinning drive shaft spiraling around the sound and sight of the new van Danny's getting next week. Two days from accident to flight. Work can't wait, sometimes life has to flex around work so enough can be earned to address immediate needs again. I'm certain, after ten years of getting by that no matter how ugh you've got it never seems enough. It never gets beyond the horizon. Brushfires have be one a way of life. Gig to gig, check to check, hoping it's enough and that more gigs line up. No time to work on new skills, no time to communicate, self promote or dialog for theater or event gigs. Soon maybe. Hopefully. Nothing like rapt listeners to infuse life and smiles into a storyteller's day.
Public transportation has become important. Shuttles, buses, light rail lines. Schedules, tickets and maps that can sometimes only recognized by locals.
I've found my favorite transit is the Skyway in Minneapolis. The Skyway is a walkway above the streets that is enclosed from weather and offers beautiful urban views, food and other businesses. It's nice to stand above the streets watching traffic. Eye catching art and architecture from the Convention center, Target Field all the way beyond the Government Center.
Do you know what Public transportation and walkways are in your area? Have you taken time to experience them?
I loved taking the light rail, walking a mile in the Skyway to Fanfest last summer at the Convention center. I was Tony the Tiger, giving high fives, hugs, and mugging for pictures. Those memories bring a smile, even though the event is long past.

What places bring bright memories to the front of your mind? What puts a skip in your step and laughter in your voice?
Has it been too long since you sought them out?

You can spend time complaining about schedules, transportation stress or you can focus on the lighter parts. Friendly travelers, different sights, tastes, sounds, history and culture or days wasted griping, venting and stuck in the mud of misery.

Life doesn't always give us choices. Sometimes we have two days to find what we need, we have to go away to work, we have to deal with hurdles to jump. Resent the jump or make it your own. Be glad that in the midst of everything, at least the nerves in your head are asleep again, that keeping stress focused on one task at a time is holding back the ocean tide of overwhelming waves of what still needs to be done.

I'm grateful today for how many lives we touch. We don't always appreciate how much impact our loved ones have in others lives, how much impact we have until chance shakes it up.

Where would you go: Boise?

When the boss said Boise, I wondered what was there beyond work and potatoes. When I asked if any of my friends lived there, only one in several thousand responded that he had originally come from Idaho, the others pondered potatoes and mountains with me. Did anyone really live there or was it just a weird silhouette on the instant potato packets?

Boise wasn't a huge city. Idaho is one of the least populated states. I found a brochure boasting of museums, many free or low cost including military, state, black history, penitentiary, mining, and the World Birds of Prey center. One picture showed a lady mugging for the camera as if she was in a giant baked potato with a butter pat melting on her brow. I pictured myself in the baked potato, prepared myself for the absurdity. I arrived to find the State history museum closed for renovations, all the tantalizing truths and trivias of Idaho and the baked potato set locked away and dark.
I was distracted from my melancholy by a beautiful rose garden, the scent of roses was the scent of Boise. In October I seemed to find roses everywhere instead of potatoes. I wandered into the BAM, Boise Art Museum and enjoyed a myriad of well displayed ceramics, glass, paintings, photographs, and sculpture with absolutely no potatoes. Ansel Adams was well represented.
I enjoyed delicious sushi at Superb Sushi Downtown. I strolled past the Egyptian Theater showing Army of Darkness, and looked at the Capital building.
The next morning I started by visiting the Nature Center at the Department of Fish and Game. I stood on a bridge watching a seven foot long sturgeon slide through the water below, adept at moving without rippling the surface after twenty five years of swimming. I learned what science is doing to bolster Idaho salmon populations in the face to dams and other obstacles beyond current and waterfalls between Idaho and the sea. I went to the Mining museum on the State Penitentiary grounds. I learned about what stones come from Idaho, examined various stones with a handheld microscope that showed what it saw on a television. I appreciated an impressive black light exhibit.
I was deciding where to go next, hours to go before my flight when a man in uniform gave a bright smile and asked if I was going to stop at the Penitentiary. I wasn't, but seeing others going in, and such gregarious tour guides I decided to. I walked into the State Pen. I paid to get in. It closed in the seventies before I was born. I stepped into the courtyard. The walkways were surrounded by roses. Lovely, bright roses against stark stone and rusted iron. I went to the rose garden, a sign told me five prisoners were executed there. I snuck in to the buildings in the allowed areas and looked at the cells. My imagination was working overtime on escape plans even though I was free. I learned the history of prison tattoos and of events and colorful characters including escapees. There was a weapons display in one building with everything from grease guns, shoulder cannons to an early gatling gun. It was an Impressive display of grenades, mines, guns, swords and various accessories.
I left there with images of shells and mortars dancing in my head. I wandered next door into the Botanical gardens which were where one of the prison yards had been as well as several graves.
Scarecrows hinted at Autumn, roses, vegetables, pumpkins, sages and many vibrant landscapes unfolded as I explored.  An oriental chime which requested I toll it three times and make a wish. I wished that no challenges we face this year be greater than our strength and may our friends know our hearts.
I finished my exploration by seeking out the Bogus Basin park. I pictured a basin, water. I was dead wrong. I drove a ribbon of switchbacks higher and higher out of Boise. I ended fifteen miles out at a ski resort that still had up to go. Golden fall grasses were worn by soft edged rolling mountains around the basin were Boise nestled. Evergreens accented the heights, golden sage flowers and rust colored dried grasses played in the breeze at lonely vistas where I stood alone surveying miles without a soul in them.
Still no potatoes.
I had Mediterranean food, they tried giving me fries instead of rice but I turned down the potatoes when they finally tried to slip incongruously into my meal.
Lewis and Clark came through, geography happened from earthquakes to bottles of ash from Mount St Helens and the ground spreading and stretching with time, where once the Pacific shore was in Idaho.

Hard to get lost, not so many people and lots of wild places where perhaps once people worked in remote areas striving to bring the golden blood that brings a deadly fever of greed with it out of the ground.

That's where I went, where would you go?

Where would you go: St Louis?

Six hours in St Louis to explore, where would you go? What would you do?

I pursued history again. The site of the 1904 World's Fair. I went to Forest Park. I started out geocaching while I waited for the museums and zoo to open. I walked around enjoying the flowers, trees and waterways. The zoo and museums have free admission. If I lived here, I would visit often and volunteer at one of the attractions.

I started with St Louis Zoo. I went into the penguin and puffin house, enjoying the proximity and character of both birds. Everyone was talking about the new polar bear. I stood at the glass outside, amused at how much other people wanted instant satisfaction- to see the bear right now. While they walked away, the bear came around the corner. I walked with it. The only thing between us was less than a foot of glass. We walked together the length of the window. The bear turned and wandered up on the rocks. I turned and wandered the zoo. I watched a tiger resting in a pool of water. A volunteer told me about popcorn plants and had me touch the leaves to smell the rich, buttery scent. Here, I'd just been looking at the golden flowers.
Time flew, the zoo was huge! I raced out and up the hill to the St Louis Art Museum. I strolled through admiring diverse artworks from abstracts to impressionists.
I sat on the rocks at the edge of picnic island. I admired the Great Basin. I even had time to appreciate exhibits at the Missouri History Museum on the 1904 World's Fair and on what St Louis was like in 1895.

My time was up too fast. The memories were worth it!

Taking Chances

The day was grey. The sky spit rain sporadically, just enough to goad me into turning on and off the windshield wipers. Vehicles in front, behind along the highway all filled with different lives, dreams and realities.
I saw a vehicle and camper along the side of the road, broken down. About a mile later, in the drizzle I saw the determined walk of a traveler carrying a backpack fighting a rolling suitcase. What if our roles were reversed? Normally, my car is too full to offer rides but I was driving a rental which happened to be a small van.
What if he was me?
I pulled over. I saw relief in his face.
He was only going fifty miles up the highway to his mother's house. I was going further. As I drove he told me about himself, what brought him there. He told me he'd been stuck there most of the day with a low charge on his phone. No one stopped to even ask if he needed a hand, a ride, anything.
He had just mentally told the universe "Haven't I always stopped to start batteries, change tires- yet I'm stuck walking fifty miles in the rain? See if I help anyone next time."
Then I pulled over. I offered a ride. A woman taught never to let a stranger in her car. He told me all this. He was dumbfounded. Why did I stop, he asked.
"If it was me, I would have hoped someone would do the same. I have three good friends who hitchhike frequently. All three are guys who are trustworthy, intelligent, caring, and giving. If I a was stranded I would hope someone would take a chance and help me out."
He spent part of the ride trying to figure out what to give me as a reward. I had to tell him repeatedly that it wasn't about getting anything- it was lending a hand where it's needed. I told him pay it forward.

We take chances every day. Are they always wise? Sometimes we pretend there isn't a choice. We give ourselves reasons to burrow into detached apathy.

Talk to strangers. Meet your neighbors. Learn about the realities other people live inside, when you do it often enough you find it easy to change your own. Grow. Learn the names of the plants that grow in your area, which ones heal you, harm you or which ones you can eat. Learn the history of your community. Learn about different cultures. Sing a song with the radio. Do something you have never done before.

I take risks. I accept the price of taking chances, for me it's a better investment than living like I'm made of marzipan cowering on a shelf.

Sometimes our weaknesses and flaws are our strengths, depending on whether you use them or let them rule you.

Contradictions and Crossroads

I still see the yellow line even though I'm not driving, it streches through my thoughts with caution signs. Caution: sharp when irrate, easily distracted, stubborn, self reliant, distant, restless.

My head fills with questions as I drive:

Why do hotels claim to have free WiFi when their signal is a suggestion of false hope, vanishing whenever you notice it at the edge of your screen?

Why are we so contradictory?

Why do we claim to care for each other, the environment, and what we eat- while devouring deep fried artificial meals with enhanced flavor to hide the lack of taste as we finish with a benediction about how some group meeting a specific description is actually the ultimate villain of all time necessitating destruction, prejudice and punishment?

Who made us the judge and jury?

Why do we have to fight over what words in old books should structure our lives and our self judgements? Why can't we focus on living and teach children to step away from judgement?

If your ancestors were persecuted and forced to follow a different religion, why are you so loyal to it? Stockholm syndrome?

Why are some people so determined to become enraged at the idea of taking the power in this country away from the 1%? If you aren't in the one percent is it because you think some day you could be?

These thoughts and a thousand others go through my head. If you are offended, why- you do not have to think them.

I'm not going door to door spreading my inner musings, nor am I set on harassing you by sharing shock style, offense evoking memes on your page or to your email. Incidentally, I have had other do those things to me then call me names via email because I don't argue with them.

  I don't post my beliefs to your wall or your email. I don't name call. If you've got to do that, you've got First world problems. You post for prayers, I politely use your preferred terminology to show support.

I've got memories of the dead. I've got memories of the living who are beneath you, around you and often avoided. The discontented, the imperfect, the different, people with stigmas who are actually incredible. Arrogance is cocaine, ego is alcohol and prayers are prescription pain killers. Denial is heroin.

I've got priorities. Food, shelter, friendship, love, my health, the health of those around me, the environment I'm in. No blame, no resentment just what can I do to enhance the world I'm in.  To meet needs and wants as best I can. Go without the frills of wants for several years and your mouth tastes like ashes when you walk into a consumer wallet sucking store full of everything you will never need. Selfies are fostering a new type of narcissism.

Why go to a beautiful place to stare at yourself?

No store sells love. No store offers contracts on self esteem or guilt reduction. No store carries discipline on its overstocked shelves between smartphones that think for you so you can live numb with the drugs and the sports and the petty tabloid dramas that titillate.

I can't go into a loan officer and say, what work can I trade you for that guy's health back?

Why isn't there an easily accessible way for students to go and get help when there are conflicts with colleges- why is it always on the student when in all other business deals there are easy to find advocacy and mediation organizations?

Why do we focus so much on the unimportant trivia and so little on the real priorities?

What are we going to do with all the excessive unnecessary smartphone cases? Are we going to use them as roofing tiles?

Even if you discount my musings:

The next time you start to stereotype in your head, stop.

The next time you have an intolerant reaction, pause and put yourself in their shoes.

It's not about being right. It's about being.

Why hate?

I put on different faces, different names so often that I've learned you can believe in anything for a while. You can love and adore it from cars to philosophies. You can put it down and walk away.

Take what you need. A friend emphasized finding the merits in all perspectives rather than focusing venom on the points to distort and feed hate.

I change every day. I'm the same but different, like everyone else I'm full of cobtradictions but when I chase down irrational beliefs and thoughts I create a crossroad. I move beyond them, leaving them with their toxic treasures and their thumbs sticking out.

The world is too incredible, life is too short. I'm still seeing the reflective paint guiding me forward but I'm not afraid to park and walk outside the lines. Are you?

A Birthday Wish

We all have one, once a year, whether it is momentous or quiet. We all age, second by second and day by day. We grow into ourselves, our faces develop lines reflecting our character and our relationships reflect our hearts, while our paths demonstrates our spirit.

How do we become? Some like caterpillars do it without thought, effortlessly creating a cocoon then blossoming to a thousand smiles.

When I was young I was blessed with three Great grandmothers. They were Great. They taught me what love was and that it was not my fault that I was what I was. It was still hard. Sometimes I had to go home. I told stories to myself of what love and care really should be, I created excuses in my heart to dampen the wounds from those closest to me. Those stories got me through a childhood full of emotional traps, spiderwebs and sorrows. I lived a thousand lovely fantasies in my head.

I never chose to become something subtly cruel. I could have easily. It was modelled for me. I could have set emotions aside, they're awkward anyways to carry around inside. I could have become my father's daughter, finding happiness in trapping and killing animals.

Instead I found the person I wanted to be through looking outside my home. I looked in books, fairy tales that inspired because the hero faced darkness around and within but perservered to go beyond. No guilded edges, stories with sharp glass and death. Stephen King 's Cycle of the Werewolf, the Stand, Hans Christian Anderson, the Illiad. Light reading when you aren't yet ten. The heros resonated, their characters called to me. They sang "Who do you want to be?"

People ask "What do you want to do, what would make you happy?"

Odd question, I think. What makes me happy is making the choices to live, to care, and to be who I've become despite the shadows that will always roam in my head and the scars that will always pattern across my heart. I consider those scars like the patterns on the wings of butterflies. My spirit burns as an intense lightening, capable of light and destruction. Each of us has this struggle.

Today I stand at a Vista looking back. I've come a long distance. I am humbled and honored by the shapes of the hearts around me. I am blessed by thousands of glowing, growing hearts. My spirit dwells in a beautiful circle of love. If you could all see it the way I do: you would see yourselves as flowers, trees, mountains and golden plains, with a few volcanoes too. I am an ocean, tide going in and out. Just appreciating the view and honor of being in your presence.

Today I grow older by seconds and minutes as always, but in my thoughts today are every single one of you. You are the richest gifts. Today, my birthday wish is that you treat each other well, you treat yourselves with love- because I love seeing you radiant and nothing is finer than that.