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When we see through our hearts, we recognize that every single one of us is infused with creativity. Divine Sparks are embedded in everyone and everything. It's up to us to be courageous, to look and listen deeply, to find the sparks, gather and release them back into the universe, transformed into something new. Join me as we wake up to the sacred-ordinary blessings waiting to greet us each and every day.

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Sunday, March 18, 2012

On Tuesday I Met The Bogeyman





On Tuesday I met the bogeyman


she’s a thirty-something woman
thick dark hair cascades across her shoulders
surprisingly strong on her frame
strong enough to carry the weight of
God knows how many wounded stories.

Glasses shield kind brown eyes
from luckless tales that pour across
her utilitarian metal desk dripping
gushing onto her young loving lap
day after
day after
day
I wonder
what’s her story?

Anger, frustration, sadness, grief, expressed through sarcasm, I admit this is where I am sometimes, sometimes lately. Sometimes it gets a little crowded, a little ugly and uncomfortable in my mind. I’m aware that this tumult is happening, arising from fear, from disappointment. I recognize these emotions for what they are and see what is inside, what is outside, what is changing, oh everything is always changing and that is a comfort. But still, I get lost in myself sometimes. I momentarily forget that it isn’t all about me, well of course not. Life is about US, and so much more. I know this, I do, and still some days, some days lately, I lose my way; tense, snarky, suffocating thoughts spin round and round and choke me, filling my throat with words I should NOT say, come out garbled anyway, until I finally remember; just exhale and listen. I hear my own agitation ricochet, a pinball ringing bells, lighting lights, through a maze of words, words, words, so much noise in this dark cave my mind can become, points I score are pointless, they only create more tension so that I must release the spring-loaded thoughts; just exhale. I inhale fully and then exhale again, a deep sigh of forgiveness. Compassion, love gratitude, rush in with a tide of tears. I’m only human. And only human is enough. It is all I know how to be. It is all that I am, that we are. And yes this is about US, a story told from my perspective on a particular day, but as I said, it isn’t all about me, not really; this is a story about life, it is about all of us, and so much more
Inhale…

First timer at the Social Security office; my mind chasing its own tail, looking at all the other people in the waiting area, anger flashed “What am I doing HERE?” My husband went up and took a ticket. We sat listening to the numbers being called, a grayed—where is the hand sanitizer, I know it is in my purse somewhere—kind of space. The ticket made me think “bingo hall,” not that I’ve ever been in one, but I’d never been in a Social Security office either. Three rows of chairs lined up, linked together, no tables —was our number "A34" lucky??? And a large silent TV with S.S. info-mercials, alternating English/Spanish subtitles, a continuous "easy-listening" garageband music loop that I was certain was playing subliminal messages ("get out while you still can") or would put me in a coma from utter repetitive boredom ('irritating-listening" for me). All the while denial, that sleeping dragon stirred —“I don't belong here with these three pony tailed, war vets, these two mothers with runny nosed toddlers wrapped around their plump legginged legs —round eyed cuties playing peek-a-boo with the strange looking lady with the freakish uncontrollable random head shake in the fold up wheelchair (could easily be mistaken for an oversized umbrella stroller), the old man who looks so tired and doesn't seem to understand what the annoyed woman in the cut-out window keeps repeating to him (repetition a common theme in the room), the twenty-something kid who couldn’t possibly have showered today or washed his jeans in at least a month if ever. It wasn't that crowded —and then one little girl forgot to be shy and started talking to her Mamma about her cell phone (her mother's, but she was pretending to be grown-up), and I heard my toddler voice. My MS impaired toddler voice thrown ventriloquist style escaping through her tiny rosebud lips. Maybe she was two and a half, three tops; she was easier to understand than me, the lady with the freakish uncontrollable random head shake in the fold up wheelchair (could easily be mistaken for an oversized umbrella stroller) —and tears leaked out of my eyes, slid down my face, rained on my jeans, softening them so seeds of compassion could embed themselves in my soul-soil; tender blossoms of love at the ready, just below the surface. 


I am every single one of these individuals. They are me; we are ONE. We are all living life, decaying hollowed hallowed tree trunk people, silvered, surviving through challenges we didn't expect. We are humans who need help. I am a human who needs help. I worked for as long as I could, except when my kids were really small. I can't any more. Not outside our home. I do what I can when my voice allows over the phone, I'm a good listener. I create meditation podcasts that I offer for free, because it is a struggle for all of us living with chronic illness first to be able to get to a class, second to be able to afford it, and if someone has a little extra to donate, that's great, I appreciate it but don't really expect it.

I paid into the system, pray into heaven right here, the Holy Essence residing in my heart. With our first child about to go to college in the fall, and the high cost of medical care, our family, needs  income from me too. We are a multi-illness health insurance company’s worst nightmare family, and arch enemies apparently considering all the headachy “NO we still don’t have any other health insurance than yours. NO our 15 year old daughter doesn’t have her own top secret health insurance coverage beyond what we her parents provide through your company. What do you mean you will cover the injectable medication but not the syringe and we need a separate prescription for the syringe that you won’t pay for? How exactly am I supposed to give this medication to my wife that she was supposed to have last weekend but you didn’t send it until now-sans freakin’ syringe???” phone calls. These are just a few highlights from this past week’s health insurance shenanigans. I'm sure this is familiar to many of you too.

I hope that my Social Security Disability Insurance application won't be rejected. And I understand that it might be. That happens to a lot of SSDI applicants. People I know, and they have to drop their dignity again, go down to the dingy office in their city or town again, and sometimes a third time again; months and months and months of waiting to be judged "sick enough" and deserving of the money that they paid into this failing system. It has been three years since my official diagnosis; four years since I was last able to actually go to work. So for all of my family members and friends who have been telling me to go do this thing (“its so easy, they’ll help you, I’ll drive you, you are entitled”) I did it. I pulled together the courage, swallowed my pride and with my husband pushing my chariot rolled through the damn door. Ironically one of the blue electric handicap accessibility door buttons didn't work, so one of the vets opened the last door into the building for us. Was it a sign?? No, this happens all the time.

You see, I wanted to believe that I would get better, be able to drive, work again at a real job. For the past three years I really, really wanted to believe that, but remission for me is like the tree bark in the photo. Mostly I'm still standing, I even look good some days, but there are missing pieces in the myelin that is supposed to protect my nerves and carry messages from brain to muscles and vital organs, and I'm not going to be how I was. I think I lived through THOSE remission years already, and now there is too much damage to repair after new lesions form or old ones get bigger. So, Ok, I get it. It isn't going to happen. That part of my life is over. Done. Gone. This is how it is today. Tomorrow will be different. And so it goes.

On Tuesday I met the bogeyman
she’s a thirty-something woman
thick dark hair cascades across her shoulders
surprisingly strong on her frame
strong enough to carry the weight of
God knows how many wounded stories.

Glasses shield kind brown eyes
from luckless tales that pour across
her utilitarian metal desk dripping
gushing onto her young loving lap
day after
day after
day
I wonder
what’s her story?

I left heart broken with grief swirled into twisted relief. Not bitter, not sweet, metallic; perhaps that’s the taste of it? I don’t know how long we’ll wait, if I’m sick enough to qualify for benefits. What strange words to write in the same sentence, “sick enough" - "qualify" - "benefits.” But the first part of the deed is done. 

We went out for Indian food at my favorite buffet to "celebrate" this big step toward fuller acceptance of our shared life. We were hungry and it is on the way home. The waitress gave me her chai recipe (I didn’t know until I complimented her on how much I love it, drinking my second cup, that she is the one who makes it); hers is the best in town. If only I could walk downstairs, I'd make myself another cup. I think we have the ingredients. Chai in Hebrew means Life.

I am ever so grateful for the beautiful souls surrounding me in that waiting room, softening my own soul-soil, planting seeds of love, grateful for the bogeyWOman who helped me release my fear through her kind demeanor (because that is what pride often is, fear hiding behind pretentiousness.) Here's to Chai, just as it is, Holy and torn through with gaping holes, difficult and suffused with kindness, imperfect and whole. This is our story.


 A special thank you to Rebecca at Recuerdo Mi Corzon for this lovely surprise last night:-)

Lover of Small Words Honor
for my poem:
They'll Sing Themselves Free

Thank You Rebecca

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32 comments:

  1. Congratulations for your award, it is so richly deserved. And once again, your courage is astounding, I am constantly in awe of you :o)

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  2. ~you know...there has never been a more honest and true...wise and strong...beautiful compassionate bogeyman that i have stumbled upon...than you...

    "I get lost in myself sometimes"

    easily done my friend...you are not alone and as you progress from the dark to light through these moments of weakness...we can not always be so strong...too push aside the anger and pain and frustration and walk with a smile...it is through these moments just as you shared...that our lesson unravels and carries us to a new place in our journey...

    i know pride and feel the shaking head...this is not my life...yet by the end realizing i am no different from the one standing next to me...we all breath...we are all alive...and although we don't wish for our story to be painted like such...it is apart of the color that brings forth a bit of vibrant relief...

    i wrap you in my arms and honor you for always sharing the truth of your heart and mind...i wish for you for these papers to be approved...for life to move forward with a bit of ease...always my dear friend...i am walking with you...to chai...may we drink it up...savor it...much love light and blessings~

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  3. as very heartbreaking this is, its Beautiful and written with a poise and Love from a deep reflective mind.

    blessings across

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  4. Social Security offices bring out the bogeyman in all of us. Dealing with our government is frustrating. When it comes to us, the non washington politicians, they strain a gnat and swallow a camel. It could be a very simple process, provide documentation, provide benefits. With proper documentation of our needs, it beats me how they can treat us like criminals.

    We do what we have to do. At least now, hopefully, you will not have to go through this again.

    May this day be good for you.

    ((hugs))

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  5. Honest and moving, as always -- and I hope your application is approved. You've paid into this insurance system precisely to cover this situation if it ever arose. There's no shame in claiming insurance benefits, whether it's through a private insurance company or a state insurance system. It's what you've paid for.

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  6. You write so beautifully about something so very sad, dear one. Wishing you peace of body and mind and spirit, and sending you all my love, always.
    xoxoxo

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  7. Your transparency is an amazing gift; honest and moving, as Debra says. When your tears spilt as I read, mine did, too. Acceptance can be so challenging, especially when it's accepting that what was before is different now. When I was first diagnosed with fibro, I didn't accept it for several years, preferring to hope that it was something else that I could take some medicine for and clear it right up. So in a small way, I understand the challenge of knowing your previous working life has changed into a different manner of working. I cheer you for adapting so well and creating so much out of where you are now: this beautiful blog, the Healing Womb gatherings, your work on Buddha Chick. And now I'm going to go back and listen to your song on your Purple Hush post, as it touches my heart with its perfect beauty of voice.

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  8. Thank you one and all, your compassionate words give me courage and wow, wow, wow do I feel surrounded by love.

    Life is hard, life is beautiful. I feel so blessed, SO BLESSED!

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  9. Lovely contribution to the poetry pantry. Loved reading it.

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  10. Beautifully captured. Thank you for your beautiful contribution to Shadow Shot Sunday 2.

    Finding Beauty in a shadow. Have a blessed Sunday.

    Rose

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  11. I hope your SSDI application goes smoothly. My only experience with the SSA was 40 some-odd years ago when my folks died, but I doubt it's changed much. Much like the Revenue Department or Public Health Clinic!

    Great photo!

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  12. Laura, two nights ago I thought of you as I read these words in the book "My Grandfather's Blessings" by Rachel Naomi Remen (p. 78): "Seeing the confusion on my face, he [my grandfather] told me that L'Chiam! meant that no matter what difficulty life brings, no matter how hard or painful or unfair life is, life is holy and worthy of celebration. 'Even the wine is sweet to remind us that life itself is a blessing.'"

    Whatever life brings you, Laura, you find the blessing. Sending love to you ~

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  13. Laura, you constantly astound me with the grace with which you courageously transcend your situation. You are an inspiration and I so wish you didnt have to be, that you hadnt been set on such a difficult path. My heart aches for you sitting in that office, but good for you for doing it, and thank heavens the woman had kind eyes. If you dont qualify for benefits, something is terribly wrong with the system! I qualified with "just" chronic fatigue and fibromyalgia. And yes, your family needs whatever income you can get.

    The voice thing must be so disheartening. I do hope it improves. Thank heavens your voice can appear here online so your thoughts are not silenced, they still have an outlet. I am grateful for that.

    You are walking through hard days right now. May they ease with the coming of spring. Bless you.

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  14. What a story! When we are sick, it is very hard to think of anyone but ourselves, and that is natural. Being aware of it is really good. I hope you get the disability soon. Am so sorry that you have all this insurance to deal with, it is hard enough just being sick without these other things making you feel even worse.

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  15. Oh no..you went in person..I never went to the SSD office in person...They did the interview by phone or I would have been you...Oh god...I am so sorry. It is a very dehumanizing, yet humanizing experience all at the same time...I felt that way when I was in PT which specialized in MS and neurologic disorders..I felt humbled and lucky and miserable and resentful all at the same time.. It's OK..it has to be about you on some level because you are responsible for your kids. But you have to know that if you could work, you would. So would I as it would mean that I was better and could feel useful. But our feeling useless is our problem as others don't see us that way..I am so sorry...I understand all too well...hugs..Michelle

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  16. Sometimes I say sardonically, "Life is rough and then you die--if you're lucky. Otherwise, you just linger."

    Life is rough. And you seem to have encountered more than your fair share of roughness. But shining through your story is this observation: "I am every single one of these individuals. They are me; we are ONE."

    A friend of mine says, "There is no 'them and us.'" You know that. You live that. Even though life is rough (and you are much less sardonic than I).

    Cactus Shadows

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  17. Dearest Laura,
    I am always moved by your words, images, prayers, sharing...but sometimes, like today, I am just blown away. Wait - make that, blown open - in a good way (in a God way) - I can feel my heart growing...trying to be large enough to hold the compassion and empathy and strength and truth you're sharing with us. And then, once again, I give a prayer of thanks for knowing you.
    Peace be with you. So much love and light - Jill

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  18. a sad story. it is humbling i think to apply for government help. i did so once briefly for child support assistance. yet too perhaps something healing behind all this in the sense of accepting this is the way things are right now. you are so courageous in the way you speak of all the ups and downs of your life, the hopes and dreams, the realities. enjoy many cups of chai and the small signs of spring. saw some tadpoles in the pond playing with each other yesterday. hugs, suki

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  19. your poem is beautiful, you know. and so are you... in all of it. sitting beside you, today... if only virtually. yet my spirit can reach out and touch yours... i can weep with you. be gentle with yourself, today, friend. you are loved.

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  20. Absolutely be gentle with yourself today... Such an exhausting and humbling experience, yet you rise above and ooze grace. You are such an elegant, poised person. So much I learn, visiting this pink space in cyberland. :) Lois.

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  21. An amazing story, photo and poem. Who would not understand days like this?

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  22. Its actually very difficult to respond to such a post.congrats, besties and may He shower you with His grace.your grit, vision and endurance is truly inspiring.Amen.

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  23. You are a very strong person Laura. And yes I agree you are a very elegant woman inside and out. Hugs!!

    Kim,USA

    Macro Monday

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    Replies
    1. i love your beautiful honesty and candor. your willingness to speak into the gathering light. for light gathers when we open the doors to the house of belonging. i love that even in a moment of pure confrontation you hold the door open all the wider and invite everyone in.
      everyone.
      in.
      everyone.
      truly we are never alone.
      in this very moment i am right beside you.

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  24. Right down in it... No question about it. You carried us into that room.. and made us sit there. Facing the raw human soul. You have left me speechless today-(I also watched the video "Yes,that's my father.") And don't you know these angels are holding back the tide. The human spirit though trampled will, through faith be made new. We will not be lost. Reach for every drop of blessing- and share it with a broken world. xoxo prayers for your heart. teri

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  25. You essential message, Laura, of our connectedness, our oneness, shines through in this piece. Like you, I try to impart even more love and care to those who seem to be emitting the opposite. I hope others offer me this kind of grace when I'm not at my best, too. Feel better, fellow-writer. Blessings being sent.

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  26. Sending you deep love and visions of well being...you are so powerful at facing those demons... and being true to you.

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  27. Elegance in the face of huge burden, understanding is never enough, not when dealing with those systems. So many caught in the vicious cycles....you shed much needed light...great writing.

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  28. Great post...not sure exactly how to define it, but very authentic.

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  29. Your honesty, your expression of fear, doubt, anger, faith, compassion, disgust, acceptance, disappointment, sorrow, joy, thankfulness... it boggles my mind and I find your faith, your willingness to open up and share here truly a gift to us, a valuable lesson we need to ponder and take with us. WHAT will I do with this mix of emotions I have upon leaving your blog today? I like to think of it as faith in action, faithful behavior/works that will make a difference somewhere, somehow.

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  30. Your photo is beautiful. Your heart and soul are beautiful. I hope you manage to get all the help possible.

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