Welcome all!

My journal is friends' locked. I often accept new friends. I ask that you read my profile before friending me. Please drop me a message if you would like to be friended. I ask that you keep in mind that I often sware, am often blunt, and often write openly about my spirituality, politics, and other very sensitive subjects. I am blunt, open, and honest. When I welcome someone to the flist I welcome them to part of my life, and, in doing so, I trust them to be respectful of me as a person, my beliefs, and the many commenters here. It is not necessary to agree, but it is mandatory to show respect.

Welcome to my world, founded on dreams, strengthened by spirit, and ever changing through time. It is where I thrive.

You lure them in when they are broken hearted, infirmed, seeking answers, searching for a path to follow, looking for hope, wanting a sense of peace, and looking for a community. You thrive on their pain and distress. Long histories of abuse, decades of financial problems, complicated relationship issues, struggles to commune with a higher power, devastating cancers and other rare diseases, these are all things you say you can heal. You sell your books by the dozens and autograph them with a smile. You hold week long retreats where sweat lodges, naming ceremonies , sun dances, vision quests, and other ceremonies are performed, anything to soothe the soul. You lay your hands upon a dying man and chant a prayer you made up but you tell him that a Native American elder taught it to you, and you rake in the cash. You tell women that there is magic in sex and if they would just give their bodies to you for one weekend you could heal them and maybe teach them a ceremony or two. You make tonics and teas out of herbs you read about on the internet, and sing healing songs you learned off of a CD. You craft ceremonial objects you saw in a book or museum, and build a sweat lodge just like the hippie down the street built his, and then you charge enough to pay your rent just for one person to enter it. You are a con-artist and an expert marketer but the desperate flock to you, and cling to your every word and gesture. You sell them things that were never yours to offer. You tell them stories that were never yours to tell. You sing them songs that never fell from your grandmother’s lips. You may think you have it made, but plastic shaman I pray for your soul.

I do not know why you feel the need to tell your ugly lies. It's really sick that you feel a sense of glee when you prey upon the dying, disabled, and the downtrodden. I watch as they gather around you hoping that you can strengthen their relationship with Creator, because they feel they have no link to him on their own. If you could only serve as that link for them they'd be so grateful. If you could just get them started, head them on the right path, save them from destruction, save them from themselves. They cling to you, and you cling to that tiny strand that connects you to your Maker and as more grab hold of you the thread finally gives way and eventually all comes crumbling down, because really there was no connection there, no teachings, no true ceremonies, it was all a bunch of lies you told them, and told yourself.

I wonder if these people in this news article thought they'd find Creator when they went into this murdering Arizona sweat lodge. They paid Nine thousand dollars for spiritual enlightenment and three of them died that day in that sweat lodge. They died because of a plastic shaman. They died because our medicine is for real. They died because it's not something to be played with. They died because you can't just heat stones in a fire pit, then take them in any dark place and pour water over them. They died because we have certain ways of doing things and you can't learn them from a book or TV show so that you, too, can be a plastic shaman. They died because our ceremonies aren't for sale. It has been said that they died scared and with some people crying out in fear, yet it is not our way to hold ceremonies based on fear.

Plastic Shamans, your ancestors before you, robbed us dry. They took our Mother Earth as if she was theirs to build upon, hunt upon, and claim for only their own use. Our grandparents were stripped of their languages as part of assimilation, their active tongues quieted like crickets underfoot, never to sing their native songs again nor voice a word that wasn't English. I still cannot speak the words lost to my grandmother. Plastic shamans, our relatives were stripped of their ceremonies, like their long braids shed at the thresholds of boarding school doors, never to be seen again. Our spirituality was shorn from us bit by bit, illegal in this country until 1978, and we took what was left to us away from prying eyes, to practice our way of life in secret. We struggle to maintain the little that remains to us now, and you want us to give you our ceremonies for your own profit? No! We will not do it! These are our Ways. This is our own blood. This land is where our people died, fighting to keep these traditions alive for centuries. The dirt is their flesh and blood. Your people died here too, a few hundred years worth, as far as you can dig in your big toe, but the whole of Turtle Island, it was born of our grandmothers’ flesh as deep as you can dig. We will not give you what we know for your greed. We learned our sacred songs and ceremonies at the feet of the old ones. You cannot rob us of our spirituality, I beg of you, find your own.

It is sad that we have come to a place in our society where even spirituality is for sale. Everyone wants an instant solution to whatever ails them and they feel like they have no roots of stability to fall back on. I have those roots in the Tree of Life, but plastic shaman, you keep cutting the leaves and you're stripping away the bark, and you're taking what was never meant for you to have. Maybe if you had asked someone would have invited you to pray with them, or attend a sacred ceremony as a guest-maybe. Maybe you'd have offers from the elders to help heal whatever sickness your spirit feels, but now, you have become the thing we must guard our children against, for when you rob us of our ceremonies you take something from our children. When you pilfer things our ancestors gave to us and you twist them with your cold, evil hands only darkness and bad medicine can come of it. When you take our ceremonies you steal from the minds of our children and rape us of the memories of our ancestors' ways.

Plastic shaman, you are not a friend to Indian people. You say that you love us and claim your good intentions, but I say to you, your actions they are made of evil. The heart you boast as being warm enough to welcome anyone in need is cold to our pleas to stop your lies and efforts toward greed, power, fame, and wealth. Plastic shaman, I try to love you as my fellow human being, though I feel I may fall short. I pray for your soul, for your enlightenment, and for my own heart to feel some sort of compassion toward you. I pray that somehow you'll find a way to cease your false testimony before you fall at Creator's feet, because I know he knows the truth of who you really are. Still, there is hope that even the thieves among us shall be redeemed before their dying day.

Plastic shaman, just one more thing, we don't call our medicine people shamans. I just thought you should know that, just in case you wanted to work toward telling and living the truth.

Patricia Kimmi was abducted on Friday night.

Have you seen her?

Do you know anything?

She has blue eyes and brown hair.

She has a lovely smile.

She is a good person.

She never showed up for a shopping trip.

Have you seen her?



I remember reaching out to touch the half gallon carton after pouring milk for cereal as a child. I asked my mother why there was a person’s picture on the container. She told me, hugging me tightly, that they put missing children on milk cartons. I couldn’t understand what the children could be missing, was it their favorite stuffed animal or the bike they rode to school? She explained that some people liked to take children away from their parents. That sometimes they’d keep them and people would have to look for them for years. It was then that the word take sent cold fear through my tiny body. The notion that someone could take me away from my family and I could never see them again was terrifying. It led to me asking about the kids on the cartons, who they were, and what their names were. I’d say a prayer for those kids and hope they made it home safely.

Through the years I have always stopped to listen at reports of missing children, missing adults, and missing elders. I would feel a sense of dread for the family, replace that with a sense of hope, say a little prayer and go about my day. I never thought about what it would feel like to wait for news of a missing loved one. No one in my family has ever gone missing and while I was willing to pray for the people I saw on TV or heard on the radio, I never put much thought or emotion behind it.

Until this past weekend.

Pat Kimmi has been missing since Friday night.

Pat is a long time friend of mine. I met her on the internet. That is a statement that always makes non-internet people turn away. They tell me that I can never know someone that I meet on the net. They say the person can be anyone, they can have big, dark, secrets. I laugh. I probably have my own big, dark secrets.

I have been reading Pat’s messages for years on a horse related e-mail list. Pat is always the first to offer prayers in a bad situation, or give comfort when someone is feeling a little down. She writes endless stories about her wonderful children and grandchildren. There is always a good dose of humor thrown in for good measure and even rough patches can be kissed by sunshine, or lightened by her strong faith. Pat is the kind of grandma that no kid would be embarrassed to be seen with, the kind of person who anyone would like, and the kind of friend everyone would hope to have.

The news stories say that on Friday night she was forcibly taken from her home. They report evidence of a struggle on her front porch. Her purse, cell phone, and car were all found at her home. She is still missing despite days of searching. They have used dogs, helicopters and search parties, only turning up her partial dentures, and perhaps other evidence they are withholding from media attention.

It’s so hard not to speculate. I’ve been told that speculating doesn’t help anyone, and I know this is true but it’s horrible feeling powerless to help a friend. On Sunday night after hearing she was missing, I couldn’t sleep. I wanted to be doing something useful. I wanted to help, but there was nothing I could do but wait, and days later, that is still all I can do, wait and pray. I tried to keep myself from dreaming, wondering if I’d have nightmares of scenarios played out in my head. Last night though I was too tired to do anything but fall into a deep sleep. When I did, instead of dreaming of Pat I dreamt of all sorts of missing people. I dreamt all over the world and in other languages. It was like traveling through a sea of missing people news broadcasts, milk cartons, and search parties. Maybe I was searching for Pat in my dreams.

She is out there somewhere. All of us who know her want her home again. Despite the grim outlook of the situation we must hope for the very best because hope is what she would tell us to do.

I do not know what brings an individual to the evil act of taking someone from their own home. I doubt I will ever understand. All those years, all those missing people I saw on TV, I’m starting to understand how horrible it is to wait for answers. I’m sure my worry is nothing compared to that of her family, and so my prayers go out to them, with all the heartfelt emotion I can give. I won’t say a half felt prayer for a missing person again. No, now I’ll mean it every time.

I hope that those who know something about her disappearance will step forward and give voice. I hope that they will do the right thing. She would do the right thing.

As for Pat, may Creator go with her where ever she may be. May she feel our love and the strength of the prayers from all of us where ever she is. May she come home to the open arms of her loving family and friends. May she survive to shine another smile on all of us. May she be safe and soon free from her captor’s grasp.


In the news
http://www.ktka.com/news/2009/nov/10/search-continues-missing-horton-woman/

http://www.kctv5.com/video/21559852/index.html

http://www.hiawathaworldonline.com/main.asp?SectionID=4&SubSectionID=21&ArticleID=3563

http://cjonline.com/news/state/2009-11-11/search_on_for_missing_woman

Below is the most recent article in which it is mentioned that Pat's horse is one of the horses being used to conduct mounted searches, and also in the video objects suspected related to the crime are shown.

http://www.ksnt.com/news/local/story/Volunteers-Comb-County-Beyond-for-Missing-Horton/JOCg8DnD7EK0IY3WcIdyYQ.cspx

Because I feel that in the heavens above
The angels, whispering one to another,
Can find among their burning tears of love,
None so devotional as that of "Mother,"
Therefore, by that dear name I have long called you,
You who are more than mother unto me.
-- Edgar Allan Poe


You taught me to smile with one gentle stroke of your hand. Your fingers light against my cheek like a butterfly dances when it kisses a flower, and like the butterfly, you spread your joy. You knew babies have that reflex that draws their pudgy cheeks into an open grin, and you wanted me to know the smiles I could not see. Through your touch I first learned the world smiled upon me. I learned to return the greeting and offer my half of the peace that falls between two smiling faces.

“I’m smiling at you,” you would say as you ran your fingers along my baby soft cheek.

This is the way I learned your face, not by touching it as in some Hollywood production, but by forming mine as a mirror of your own. It is the way I learned your joy, for each gladness I grew to expect your gentle fingers upon my tiny face. I learned your love for me through your devotion, to teach, to adapt, to learn to live in all the ways I needed most to grow. Through your eyes and lips, I learned the world was a place of wonder. I began to seek things outside myself, and to smile at my own discoveries.

When others taunted and teased me, you taught me that my strength was in my smile. Despite skinned knees, broken promises, and tarnished friendships, you were there, with that lightest touch, and always I would smile. When there was no money to buy new books, we’d leave the library smiling together. When we had peanut butter sandwiches for lunch for the fifth day in a row, we smiled at the star shapes you had cut them into. When we had to go out in the rain, we held hands and splashed through puddles with smiles in our hearts.

I still don’t know the difference between a grin and a smirk, how someone smiles with their eyes, or how a smile looks sad or fake, but I know what it feels like on the inside, and I think that’s what matters most. I know where smiles come from, you taught me that. After thirty-one-years I still smile if you pat my cheek. It’s like a thread that connects us, the joy in our hearts mirrored on our faces.

So when I think of the word smile I do not think of a broadly grinning face. I think of how through pain and sorrow, we can choose to smile with grace. I think of how it’s never wise to fake a smile or put on a disguise, and that we choose our thoughts and reactions in every case. I know what it’s like to carry a smile on my soul, and I even let it spill forth from time to time. You taught me how to smile with one gentle stroke of your hand, you, who are more than mother, and I’m still smiling.

I approach the gate bathed in the light of the full moon. You call out to me, your greeting full of anticipation pierces the still night air. I slip into the pasture pulling the gate quietly closed behind me. I hear your unshod hooves as you approach, they make little thumping sounds on the soft earth. The rain has finally stopped, but I can still smell it all around me, as if I am wrapped in a cloak made of springtime. I know you smell it too, your movements restless and eager.

Suddenly your breath is upon me, your nostrils flaring, with your customary greeting. I reach for you, scratching you on that soft spot you always like to have touched on your chest. I can’t really see you, but it seems that your coat which is pale gold in sunlight is silver under the moon’s full gaze. I turn from you and you follow. I gather the things I will need from where I had left them waiting in a pile for this midnight ride I had planned. I make efficient work of brushing you, cleaning your hooves, and bridling you. I am gentle and quick, and because you know my hands, my voice, and my every movement you do not fear my hurried pace. I do not bother with a saddle. I lead you to the center of the pasture toward the old stump that waits for bareback rides like this one. I remove my rubber rain boots and they plop into the mud. I step onto the stump, rough and wet beneath my bare toes, and in one swift movement I am on your back.

We ride to the gate and I bend to open it. Out of habit I close it behind us, as if to keep the empty pair of rubber boots from escaping the pasture.

We ride off over the wet ground. We are free from the cares of the day.

I urge you into a steady trot, my bare feet caressing your sides like the palms of lovers finding one another in the darkness. A gentle breeze stirs and my nightshirt billows over the sweatpants I hastily pulled on before going out tonight. The wind catches your mane and it is tossed up to touch my bare arm, like the silver threads of a spider’s web, its presence reminding me that the night is alive with the work of animals. As you trot bearing me carefully onward, there are owls hunting pray, rodents mating, spiders spinning webs, and all manner of activities going on around us. I am filled with wonder at the thought that every night, while I lay in dream rest, I am missing all the wonders of the living, working, animal world. Yet tonight I am deprived of nothing.

As we approach an upward slope the vegetation becomes more noticeable to me. Occasionally undergrowth brushes my legs as the trees close in above us, their arms embracing us in near silence. I can almost feel their new growth as we pass under them. They call out to us with the joy of Spring and we feel their peace.

The trail slopes steadily upward. I feel your muscles bunch beneath me as they ripple against my thighs and calves. Your powerful hindquarters propel us forward, and I shift my weight to stay with your rhythm. I work to remain perched atop your center of gravity as you climb upward. The trail is not an easy one, but our relationship is one of balance and trust. We give and take with every movement, each one lending something to the other. Each one of us taking the little we require from the other. Some say that riding is an act of dominance and obedience, but you and I know that it is a partnership that works both ways. Your head moves forward slightly and my hands give into the pressure, my arms move parallel to your neck and act as an extension of your body. There is no pulling and jarring here, only give and take like the fluidity of a pendulum that swings from a dowser’s hand. Our movement is liquid, like water, singing in whispers, dancing in moonlight, threatening to spill over the banks that confine it. Each of us climbs ever upward, full of the exhilaration born of the peace of this still night.

We arrive, and though I cannot see into the valley, I know its beauty, because it is the place we have come from. I feel the wonders of its existence, and of all things, through your breath, as you stand patiently beneath me. We look out over the trees, and down onto the trail that brought us to our destination, and we are both still. What your eyes see I do not know, but you seem content in the moment as my unseeing eyes search for something beyond the reach of your neck. In the end I am content with the journey, because it is that which matters most. I lift my head to the sky, in a solid salute to the watching moon, and a sense of overwhelming peace washes over me. I think you feel it also for you sigh in ecstasy.


In a bed, piled high with fluffy pillows I wake with a start. Moonlight pours in through the window. Outside the fresh fallen snow gleams under the moon’s gentle kiss. I sit up, trying to pull myself from a dream. As I grow aware of my surroundings, I hear her calling from the pasture, running wild despite the snow. Something has gotten her all worked up, perhaps the coyotes are lurking nearby again. I slip from my bed, bare feet cold on the hardwood floor, pull on a coat over my nightgown, and slide into a pair of boots. I step outside to find her running in nervous circles. If she saw coyotes they are gone now. I stand outside the fence, and whisper to comfort her, and she knickers in response. These late night conversations are always meaningful. My obligation to look after her and calm her completed, I head for the warmth of the house, a smile on my lips as I think of future evenings when she is grown.

I lift my head to the sky, in a solid salute to the watching moon. “The night is alive,” I whisper to myself, and I know that it is true.

I am sitting under the desk, playing with my favorite toy car. My tiny hand clutches the toy and wheels it back and forth as the voices in the room escalate. I peer out from my hiding place, trying to see what I can make out, which is never much. I begin to grow more and more terrified as the screaming reaches a crescendo. I place the red car in my lap and draw my knees to my chin, wrapping my arms around them, hugging myself in the only way I know how.

You are yelling at her, telling her she is cheating on you. I do not understand. Mom never cheats, and we play games all the time, my favorite is candy land, but we don’t own it and can’t afford to buy it. You start screaming about other men, and I don’t understand that either. The only men that come here are your friends, the ones that drink and do drugs in the living room. I know this even though I’m not supposed to know, but I don’t understand what drugs are. Mom has few friends over and none of them are men so I don’t know why you are so mad. I know that if I say anything you will tell me to be quiet, and maybe grab me to shove me from this room and it will hurt. If I open my mouth mom will beg me to keep it shut so you won’t come after me. My four year old legs move fast, but yours are longer and I can’t escape your reach.

I hear the glass breaking, dishes I think, and I hold my breath and cover my head. Although I can’t see across the room, I know enough to know it’s not safe to move from my customary kitchen hiding place. Finally you scream one last thing, slam the kitchen door, and I hear the tires of the station wagon screeching across the pavement outside. Mom is crying and I slip out from under the desk to rescue her. She snaps at me not to move because there is glass everywhere, so I wait, helpless as she cleans up the mess.

***

You tell me you will buy me new shoes.

You say you will come and visit.

You promise a ride on the tandem bike, along the cliffs where we can watch the ocean and feel its peace.

You say you will watch me show my goats, take a horseback riding lesson, or attend my next band performance.

Yet you are too busy.

You have no money.

You forgot.

You are sorry, so sorry.

There just wasn’t time.

Your car broke down but you will get another car.

Someone stole your wallet.

It won’t happen again. Next time you’ll remember.

***

You tell me you want to change and I pray for you. I am sure that Creator will hear me, and I know he can help you. I pray until my voice is hoarse, throat raw, and body trembling with the faith and emotion I put into my prayer. I pray for you every day. Creator please help him. Give him the tools he needs to heal, to live in a better way. Creator please show him the way. Help him, help him, help him.

Nothing changes. I begin to realize that Creator can’t help those who don’t want to change. That he has given us free will, and I cannot change your will. I weep for the fact that I am powerless, and that it is too much for a fourteen-year-old girl to endure. I pray anyway, because it is all I know how to do. I pray that you are safe, and that you learn the lessons you need to learn in this lifetime.

***

My voice is like a fine thread, stretching so many miles, half the continent, as I talk to you on the phone I wonder if the thread will break. It is hard to find the words after so many years, but I called my brother and you were at his house, and I didn’t want to be rude. I tell you I will have brain surgery in just a few weeks. They will cut open my skull while I lay helpless, waiting to see if I will survive. I can tell that you are worried. Your voice shakes like a new bird ready to take its first flight. You do not know what to say. You begin to make apologies and I wave them away, noticing that my right hand makes a true arch in the air in front of my face. That’s the past I say, that’s the past. You tell me that you will come, maybe be there, maybe just fly in for a day or two, to whichever airport is near the hospital, maybe my brother can come with you.

No, I say.

You try to reason with me. I tell you it will be okay. I tell you that mom is coming to be with me, and that it will be okay.

You tell me that you love me, and I wonder if you really do, because you don’t really even know me. I reply that I love you too, and I can say it with all honesty now, it’s not fake anymore, because despite the huge void you have left in my life all these years, you were always there in a form of a lesson. I learned from your absence, your abusive words, your harsh hands, and your empty promises. I learned that the drugs and the bottle were not you, they were not your spirit, and so I learned to love you for who you really are. They say to love in sickness and in health, and I do, from afar, because I will not tolerate the abuse of your broken promises.

So I love you dad, and in case you’re wondering, I survived the brain surgery three years ago, just in case you were wondering, you never asked. Maybe you forgot.

Who Am I

Am I a tree
Big and strong
Enduring all things
Or a delicate flower
Tearing in the wind
When things are hard
And times are tough
Or only an actor
Pretending to be
Whoever I’m not


I wrote the above when I was about eleven-years-old. On one hand I hope my writing has evolved since then, but on the other hand, what does this verse say that is any different than most of us have been able to say at some point in our lives? When I wrote it, it was the beginning of womanhood for me. It must have been all the raging hormones of puberty causing me to think about who I was becoming. The real struggle seemed to be between whether I wanted to do my best to fit in, or whether I wanted simply to be true to myself. Over the years I have chosen both in turns, but as I grow older, more and more I strive to be true to myself, to not be an actor, to not fill the roles others would have me fill, and not be molded by their desires.

I still find myself asking who I really am. When there is a choice to be made, the question is less of what should I do, and more of who am I, what kind of person do I want to be? When I think of my identity, I first think of how others would introduce me, because sometimes that does actually matter. Still I want to be remembered for the things I use to define my own self, and not by any misguided interpretations put forth by others.

The bare bones description of how I identify myself is as a mixed race woman with multiple disabilities. If you break it down, I am Italian, German, Mohawk and Onondaga. I was born and raised in Santa Cruz California. I lived on a farm in Colorado for nine years before moving to Massachusetts four years ago. While my educational background is a B.S. in Equine Science and a masters of Agriculture, I am currently exercising my advocacy skills as an advocate and peer counselor at an Independent Living Center which offers services to disabled adults. I am legally blind since birth due to a rare congenital brain defect which causes other medical issues. I have trigeminal neuralgia which causes chronic pain, rather irritating asthma, and a few other health problems I choose not to dwell on.

All of those facts are like the binding of the book that is my life. It is the daily things that make me who I am. It is the notion that every sunrise is a gift and every sunset a victory that speaks to the kind of person I am. It’s seeking the new opportunities in every day, considering how my actions will effect others, and finding peace in nature, that speak to who I am. Every time I set foot out my door with my guide dog Fargo each step writes our story. All the dreams that grasp my spirit at night, carrying me to new lands and new possibilities, make me who I am. Any deeds I might do for others through my compassion or my strength help to form the person I am becoming every day.

Most importantly, I’m a person, just like most, trying to remind myself of who I am, trying to be true to me. My stories are mostly ordinary, though I may approach them from a different perspective. My words are mostly common, though I try to string them together as a tightly woven basket, so that they begin where they once left off, forming a circle as does life. My thoughts, ideas, values, and dreams, might be a bit out of the ordinary, but I force no one to share them.

Think of this as the cover page. It’s the first thing you see when you open the book. It might influence my stories, but it doesn’t tell them. There are many more pages to come. I’m sure as I write them, I’ll still be asking myself, who am I, just as that little girl did so many years ago. After all, she is still here with me, deep inside, and every now and then she speaks to me.

Sign ups for therealljidol have started. I am just writing here to say the one thing that I plan to participate again this year. I hope my flist will read and support me by leaving comments. If you think my writing sucks don't feel the need to vote for me. Grins.

This post is for Invisible Illness Week. More Information can be found at the end. This post will remain public for a short time so that it can be linked to in various places.

1. The illness I live with is:
Trigeminal Neuralgia

2. I was diagnosed with it in the year:
2001, when I was 23 years old.

3. But I had symptoms since:
Possibly as early as age 14 starting with pain in my right eye and temple.

4. The biggest adjustment I’ve had to make is:
I often have to limit how much I talk, what I can eat, going out in cold weather, and often need more rest. I have had to adjust to a new self with less energy because of medications.

5. Most people assume:
People assume all kinds of things. Sometimes they think I am just lazy or a hermit when I don't want to go out and do things but really I am in pain or exhausted. They think if I don't want to eat something that I'm being difficult because what I'm able to eat changes from day to day depending on pain and what I can chew. They assume that I did something irresponsible to cause this, that if I took better care I'd feel better, that I haven't tried everything, that it is the same as TMJ and I just need a dentist, that it's just like the headaches they get, that if I didn't drink caffiend I'd be cured, that it will eventually go away with a magic poof, or that I am unlucky or have bad karma.

6. The hardest part about mornings are:
It depends on the day. If it is a bad day I might even groan at the fact I even woke up again. I haven't had days like that in a while, I won't allow myself to feel sorry and grieve like that anymore, not now. Usually the hardest part is not knowing what the day will bring as far as pain and limitations, hour to hour, minute to minute, second to second. Will I be able to go through with my plans?

7. My favorite medical TV show is:
I like them all. I can relate which is sick and sad. With my various medical things sometimes I like to watch what other people go through, even if it's fake.

8. A gadget I couldn’t live without is:
My blender and my food processor. When you are hungry and the pain in your face is so bad it brings you to your knees anything is appitising even if it has gone through a blender.

9. The hardest part about nights are:
Trying to get to sleep when the pain is bad. Laying there praying it will go away long enough to sleep. Wanting to get up and pace the floor but knowing you need sleep.

10. Each day I take __ pills & vitamins. (No comments, please)
I feel like I can no longer respect people who have critical comments for the way I chose to get through my days. I'm doing the best I can with what I have. My lists of medications and supplements is ever changing and often I chose not to discuss it with others because they are critical and I often do not wish for the advice they give. It just depends on the day and the person.

11. Regarding alternative treatments I:
Receive upper cervical chiropractic adjustments twice a week. I meditate when I am able. I fall heavily on spiritual practices that I do not wish to discuss here. I have tried various vitamins, reiki, and etc., but UCC has had the most benefit so I stick with it.

12. If I had to choose between an invisible illness or visible I would choose:
Well since I'm also blind/visually impaired and have the TN and asthma, I think the visable disability, blindness, is the easiest to deal with. Sometimes I think of how easy it would be to only be blind. I think of how it's almost like having no disability at all, and then I realize that it's sort of sad that I think of it that way because of course blindness can be a challenging disability.

13. Regarding working and career:
I simply have no idea how I make it through each day at work. It's like every day is a miracle or victory. Talking on the phone at work can be really hard, as is concentrating long enough to work while taking all my meds.

14. People would be surprised to know:
I am seldom bitter toward my lot in life. I do not blame Creator or anyone else. I still have every faith that life has purpose even through pain. If tommorrow isn't better it is at least the gift of another day to offer graditude and serve our fellow beings on this earth. That if we toil for a good cause, even through pain and strife, something good will come in the end. There is beauty in all things, and even suffering has its lessons and reasons. I still know that Creator is loving and touches us with mercy, and the peace we can find within ourselves if we only seek it.

15. The hardest thing to accept about my new reality has been:
That few people will ever attempt to understand me and even fewer will succeed in doing so. That my life has been changed entirely and it is not what I had ever expected it to be. That while the pain may wear me down, I must keep finding ways to be strong, because in doing so, I live.

16. Something I never thought I could do with my illness that I did was:
Have a year and a half of hard earned remission because of a micro vascular decompression brain surgery.

17. The commercials about my illness:
Don't even exist.

18. Something I really miss doing since I was diagnosed is:
Eating raw carrots, chewing gum, going out in winter without covering my face, not wondering when the pain will come next.

19. It was really hard to have to give up:
All the energy I had before I started taking all the medications to control my pain.

20. A new hobby I have taken up since my diagnosis is:
Trying harder to be compassionate for more people, collecting recipes of soft or pureed foods, talking to people about chronic pain and how to manage it.

21. If I could have one day of feeling normal again I would:
Cry. It is the first thing I did when I came out of surgery for my MVD and bit into a cracker and could chew it without pain. Too bad the MVD was unsuccessful and the pain returned. I think I will see another day like that again someday, but I don't hold my breath.

22. My illness has taught me:
Not just to give thanks for the little you have, but to make the little things great and give more thanks. To laugh and smile and sing while you can and they do not cause pain. To take each day as it comes. To say what you mean and mean what you say. Most of all, great pain and suffering are different things to different people, and they should be encouraged, supported, loved, prayed for, and respected, no matter how big or small you feel their situation is. This one I learn over and over each day. Even the smallest pebble can upset the cart.

23. Want to know a secret? One thing people say that gets under my skin is:
Get better. It sounds like a command! Not like I hope you get better, pray you have less pain, wish tommorrow would be better, but just plain get better. Ug!

24. But I love it when people:
Ask how I am and even wait for the answer and care to hear what it is. Find me soft mushy things to eat when I don't feel good. Tell me stupid or funny stories to cheer me up. Instant message me instead of talking to me on the phone when I hurt. Check on me if I am being quiet. Leave me alone when I am grumpy. Speak to me without making a suggestion on what I should do.

25. My favorite motto, scripture, quote that gets me through tough times is:
The Garth Brooks song The River as well as others. The tought that the world should be left a better place when I leave it, then when I found it, and to accomplish that I have work to do, no matter how rotten I feel. I am often heard to say, one foot in front of the other, keep on trudging. I am also often heard to say, get off your ass and do something about it.

26. When someone is diagnosed I’d like to tell them:
Get a really good neurologist. Think about a pain management doc. Think about a neurosurgeon. Try UCC or other alternative therapies. Read a lot. Join a support group online or elsewhere. Don't give up, one foot in front of the other, keep on trudging.

27. Something that has surprised me about living with an illness is:
There are always a few people who won't abandon you no matter what, most people try to be compassionate, faith will carry you through a lot, and a clean house isn't everything.

28. The nicest thing someone did for me when I wasn’t feeling well was:
After brain surgery read to me, washed my hair, brought me food in bed, brought me a barf bowl, and did my laundry for months and months when I couldn't climb the stairs. Thanks mom and baxaphobia! Also sent me cards, notes saying they were thinking of me, smashed up food for me, or just came over to my house to hang out in pajamas thanks everyone!

29. I’m involved with Invisible Illness Week because:
I saw it on someone elses blog.

30. The fact that you read this list makes me feel:
Loved. If you made it to the bottom, extra loved. Also like you are willing to take the time to learn new things and that you care about people, truly care.



Find out more about National Invisible Chronic Illness Awareness Week and the 5-day free virtual conference with 20 speakers Sept 14-18, 2009 at www.invisibleillness.com
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