Observations

I wrote both of these blurbs while I was in the hospital after having a nervous break down shortly after having made the decision to cut off my Grandmother's life support.

Around the Doorway

Squeaky socks on cold mint floors. Ice cream walls surrounding popscicle stick beds.

Creaking, wheezing, plastic cushions and emphysemic sofas.

Holding happy smiling drones of so much common ink.

The silent clock points the time and slowly each allows a cushion to again inhale.

With awkward silence and shuffling feet they move to politely crowd the half open door.

Names are spoken in confidential tones

and little paper cups if colored candy are returned neatly empty.

Strangers wearing badges of Authority ask difficult and painful questions in voices only half hushed.

asking for intimate answers to receive better annunciation.

Paled, water gone, empty cup returned

they go off slowly - one by one

To check the clock on stockinged feet, and the list of what unchanged thing is to follow.

Purple shadows fall like spider mascaraed eyelashes.

Casting their pink webs of light across the array of mixed emotions

their faces can not help but betray.

Lost Souls

There are so many lost souls here. Many who have meandered innocently into the darkness of unrelenting self doubt. Others who boldly stepped off into the muddle of mixed colors that seemed to offer the chance of a rainbow but, instead, they found the colors were just the blaze of so many dew beads on the steel strong threads of a greedy web. Some were thrust early from the road we were told was to be expected. And others of us had a hand come from an innocuous shadow and tear us from what could have been.

So many hearts burdened with "should of" and "if only" or wrapped so tightly in protective layers they can barely beat.

So many wraiths of the past and rattling chains of the future.

And then, in the seemingly impenetrable darkness our eyes long ago adjusted to and our minds and bodies learned to call "normal" and "right" a tiny tendril of light - of real light - the kind so many of have forgotten or had given up on as a childhood fantasy leaks through a crack we missed buttressing with our own dark matter.

With the light come voices - so foreign. Offering the terrifying prospect of hope, and even the unthinkable - understanding.

So many lost souls - so many who turn an ear to the voices, who inch closer to the light - who find they are far from lost, but perfectly found.

I've watched as some here allowed more and more of the light to fall on their souls - and it starts to radiate out through a found voice shared, eyes that have cast away their dullness and now hold a gleam full of promise, and real and honest friendships forged through the pain of truthful tears and the sweat of together working to widen the crack and let the light, slowly and painfully show us the harsh truth of how

strong, caring, giving, and deeply beautiful we really are.

Inspiration?

Why is it the desire to write seems only to come at the most inopportune moments? I'll be laying in bed at 3am and suddenly a sentence will draw itself in my mind's eye, and I long to write it down...or I'll be moved deeply by something or someone and want to post a picture of that contact in a way I can only do with words, but I can't very well say to my beautiful child or dear friend or total stranger, "Pardon me a moment, I want to write down how wonderful this is. Just hold that thought, I'll be back in a half hour!"

Usually, by the time I get to my keyboard the moment is gone, the sentence is lost among the jumble of half remembered dreams, and I'm simply uninspired. I wonder if I can muster the self discipline to write something every day during Lent? Self discipline has never been one of my strong points, and I'd like to change that. I sort of feel like I'm too old for how reactionary I am sometimes. Though, it could be that to attempt to become more disciplined I'd lose something more.

I tell the kids that life is ultimately a balance, that thinking life's unfair on the whole isn't right. So, I find myself wondering, if life really is a balance, does that mean for every gain there is a loss? To move ahead we must make sacrifices along the way? Or, perhaps, we are meant to simply let go of the "trappings" of our socially acceptable material lives and embrace a life of simplicity and love.

Today I have more questions than answers. But I also have a smile I can't quite shake, and warmth in my heart I'm reveling in.

Losing Me

I was going to start a new blog under this email address. A place to go through the mourning I'm not meant to be indulging. A place to write where it is least likely to be found. The irony of posting something to the Web as a way to keep it secret isn't lost on me.

So I sat here debating starting something new and I realized that what I wanted, in part, was to mark the distinct change that is the then and the now. What better way to do that than to continue this? The then is represented here, and now...I can add the now of things.

I was, at one time, and this is truth...smart and beautiful. I took both for granted, of course. At times I was vane and so when I lost my beauty to lackadaisy care I took it as only right. After all, I had been vane, and I knew it. Years passed and I regained my good looks, I actually stopped traffic a time or two...yes really. It was a new toy, fun to play with, and I loved it.

And then it got caught up in the confusion of what drew the anger of and lust of men I had trusted, and I pushed it away. I don't know if I pushed it away to protect myself or because my self loathing was such I felt I no longer deserved it. Regardless, I know I did, I actively pushed it away.

My intellect was different. It was the core of me, the part of my ultimate self I could turn to, lean on, and trust. It was what I had in common with my children, my husband, my mother, my father, my siblings, my friends. I didn't take pride in it, though. Sometimes I was able to do things that led me to feeling proud of myself, but not in a selfserving dark confused way...in a real way that helped me to see my path in life.

I quietly feared things that could come to any of us to take away the part of myself I held honestly dear. Alzheimers, a head injury, things beyond my control that popular culture brought across my vision. I didn't know whatever forces that cause one's own body to rebel were already at work. Whatever path Fibromyalgia needed in order to meander its way into my life was being laid brick by brick. I didn't even know what FM was.

Even when the TV started showing greyhaired women wincing when a grandchild hugged them I didn't know how right and wrong those images were. It was just another illness the drug companies were profiting from. In other words, not a part of my reality.

Now, though, I know the misconceptions of age and pain the commercials held. I don't have grey hair, I don't have grandchildren, I don't hold my wrist to my chest and look into the middle distance dramatically. All of which is to say; I certainly didn't understand how devastating FM could be until it bloomed fully in my world.

I hurt, almost constantly, so much so I dismiss nearly every pain now. Stubbing my toe no longer means a sharp OW! it means OWWWWWWWW!!!!!!!!!!!! for long minutes. I've read that the pain people with FM feel is akin to the pain of breaking a bone, I believe it. I live in fear of the everyday now, of hugs and barked shins, of people needing me and me not being there.

I wish pain were the only part of FM I had to live with, I could deal with that. But it's not. I have trouble thinking, even small things can leave me befuddled for minutes at a time...or, worse, I simply lose what I was thinking about as though it touched my brain and slid off into nothingness and ceased to exist. Sometimes whatever has slipped from me leaves a residue and something can touch that and trigger a memory and I will suddenly remember what I missed or who I left hanging.

It's awful.

I know some of the people closest to me would argue that it isn't that bad, but what would it be like if they could see all the times I cover? I couldn't do that to them. It's bad enough that they have to live with this as much as they do, I won't inflict this on them whenever I can avoid it.

I can feel myself slipping now. I'm deeply tired today, the fog is thick and the more I try to push it away or think through it the worse it gets and the more tired I get.

I miss me. I doubt I'll ever be beautiful again, my age and health make that very unlikely. I only hope someday I'll regain my ability to think, to reason, and to live without the fog.

The Bottle

It's 2am and I'm awake again. I got a few hours of sleep, I'm grateful for those. It comes down to being grateful for the little things now, I guess I should have been more grateful before...I'm learning.

I came down the stairs as quickly as I could, my legs don't want to hold me without screaming and my arms take up the chorus when I ask them to help. Down the stairs, away from my warm loving husband, away from the little sounds of sleeping children, and the fuzzy fur ball of our Papillion at my feet...and to where the pills are, where I can take refuge in my computer, and I can cry without bothering or disturbing anyone or needing to explain.

To carry the 32oz bottle of Mocha Cappuchino Bolthouse Farms "perfectly protein" smoothy (I feel like hell, I allow myself these little pleasures) from the kitchen to the office didn't bring tears. I had a moment of being proud, then I had to open it. I considered calling...using my phone to call...my husband, but his phone is here on my desk charging, so I thought about the slog half way up the stairs so I could call to him without waking the kids, but no, he needs to sleep even though I know sleep hadn't taken him yet...let him think for a few hours that I'm sorted and he can relax.

I held it in my lap, my left arm wrapped around the cold bottle ('cold is the enemy' my mind kept reminding me) and held my breath as I tried to unscrew the cap. There was that one moment when it didn't feel like I was making any headway and I knew the pain would be worse for even trying. Fibromyalgia is nothing if not sadistic. Right when the tears came to my eyes and I could clearly feel every joint in my hand (there are a lot of them) the top gave, the safety seal gave it's reluctant sigh as the lid tore free...

And I wept. I put my drink on my desk and cradled my hand and wept. Each time my shoulders shook in that involuntary motion it sent a fresh wave of white pain and accompanying tears. I sat like that for a good 5 mintues...sobbing. A lot can go through the human mind in 5 minutes even when wracked with moments of blinding thought stopping pain.

I was proud, I did it, I opened the bottle...which lead to disgust, I'm 36 not 5 opening a bottle isn't something to be proud of... look how much this fucking disease has taken from me... alone, in pain, and proud of opening a fucking plastic bottle cap.

I wonder sometimes, is it human nature to flog ourselves?

Pain interrupted my dive into the wallowing pool and when I surfaced I felt shame. Not the kind best used as a flogging device, but the real kind that comes with perspective and realization and with that the weeping stopped. I cried for a while longer, I still have the stray tear making an appearance.

I felt shame because I could open the bottle, because I have a warm loving husband I could have woken and wouldn't have minded, because my children are healthy amazing people, because I have friends, I have a house with no fear of losing it, and I have a bottle to open.

Thank you, God, for the bottle and for the perspective. As I look out over the world in my mind's eye I am so very very blessed...so blessed I even have the option of wallowing in self pity. And that is a blessing, it could be so much worse.

I don't know what I can do to help people who are so much worse off than I am, but I'll think of something and when that thought comes I'll be grateful for it because I'll know, again, that those aren't my foot prints in the sand.

PhotoShop and Goodbyes: A Rant

I'm the only person in a family of artists of all kinds with any skill in photoshop, so when my grandfather got the brilliant idea to have a granite memorial erected in the family cemetery with space for several 9x4 inch metal plaques I was the one they came to for the art work.

Now anything done by commitee is generally painful...add in family politics...a huge helping of emotion...and you get a general idea of what I've been handed. Before the plaque idea came about both my mother's older sister and my grandfather's wife (not my grandmother) had passed and been cremated...they're both sitting on my grandfather's top closet shelf in his bedroom. He thinks that's pretty funny since they hated each other in life. But I digress...

When my grandmother passed I was formally handed the family plaque project. 9 revisions of Grandma's plaque later I was asked to also do my Aunt's, 14 revision of Grandma's plaque and 12 revisions of my Aunt's plaque later I finally got to contact the place we were getting these done only to find they'd gone under. So the Family Plaque Project got shelved along with the growing collection of human remains in my grandfather's closet.

-paused for 2 hours...on the phone with mom-

Last fall my mother's cousin passed, and the Family Plaque Project became central to a falling out that spanned across 3 generations. Eventually factions formed: one side wanted all of the plaques in the family cemetery uniform containing only the person's name, date of birth, and date of death; the other side wanted each person's plaque to be a reflection of the person who was no longer with us and thought each side should be unique. Months went by, phones were brashly unanswered, angry emails sent...until finally some bright spark opted to use me as part of the argument: Look how much work has already been put into these plaques!

I tried to hide, to find cover from the falling debris under my desk...but to no avail. They found me, hauled me out of hiding by an ear and both sides sternly looked at me with some sort of violent expectation. I kept my mouth wisely shut and the warring parties went their separate ways and I remained the proverbial elephant in the room for nearly a year.

-paused for several hours...took a friend to the doctor-

It was my great-aunt, the mother of my mother's no-longer-with-us cousin and leader of the identical plaque faction, who broke the silence. Well steeped in rum runners she decided that a sailboat would symbolize much of her departed son, and so the two factions reunited with hugs and long warm conversations...as though nothing had passed between them before. I stood on the sidelines, waiting.

My great-aunt is an amazing artist in her own right and the kind of white-haired woman you're shocked to find behind the wheel of the tastefully colored Ferrari that blew past you on the high way. She is a force of nature, and a woman that had a hand in raising me for time. I love her deeply. Knowing she would be involved in the FPP I realized that I should get my preveous designs together since, clearly, she'd be taking over. Interestingly, she was pleased to leave the project in my, apparently, "capable" hands.

She did do the leg work to find a new place to have the plaques made. Last week my mother suggested that it might be nice for me to get those finished before my grandfather needs one of his own. Hint taken! So I emailed the place my great-aunt found to be sure we were all on the same page yesterday. Today I got confirmation we are on the same page and they are pleased to work with us.

Hooray! Movement at last! I passed along the good news to my mother...only to find out they want to review the previously done ones again, some more. So I dug them out of my increasingly bloated MyPictures folder and sent them to her then spent the next several hours making 4 mock ups for my great-aunt to look at. Apparently, the best of the lot was the one that was only his name, date of birth, date of death, and a 2"x2" fucking clipart sail boat that took me 5 minutes to make.

Why am I doing this again?

In the Dark

I have discovered several things over the last few days. It has been a journey into quicksand that requires I ignore my own slow sinking and keep up a smile as I drown.

I went to my family to ask for help, I knew the Golden Calf was more important than me or my children so I made sure I had an offering to the glittering object of covetous worship. I researched investments, interest rates, pay offs and found something I thought could help us while still appeasing the jewel covered eyes of those I love unconditionally. At first it seemed my offering had been accepted, it was viewed, held up to the higher power of the Banker and agreed upon. I walked away feeling I had not sold my soul, but found a way to feed the glutenous beast of investment that aided all involved. It seems I was mistaken, I had only spoken with those that love me in return and not yet been viewed by the icy cold heart of gold. The heart disapproved of my offering, but was unable to undo its acceptance...so the heart moved through the world of people who could still love and cast doubt as to the sincerity or worth of my offering. New incantations of legality were cast upon it, all to be born into stone on Wednesday.

I turned to the community that has held me often as I have felt weak over circumstance only to be rebuked by A lot of People. I do not know A lot of People, bit it seems it knows me, and finds me unworthy of the warmth of the community I have fought so hard to preserve. A lot of People lashed out, and I struck a blow to its head only to find I had left my back unguarded and the soft places of my being open to a vicious attack. I reeled back, wounded, called out to those few I thought would hear me they came, quickly at first. They put a simple bandage over the worst of the wounds and assured me there would be retribution. The bandage left the wound open to the air, leaving it raw and tender, and I retreated further...to wait...to watch. From the depth of my makeshift shelter I saw retribution become cumbersome and my wound festered filling me with doubts.

I remain there, unsure of who to trust, unsure of my value, unsure of what to do.

I turned to the man on in the great reclining chair and asked for aid, only to find the shadow of a woman block my way to him. All I ask is to forgo a single vice for a single day, that the coin and clatter that would have gone to sooth him for that one evening instead go to feed my children for several days. The shadow moved and poured his wine and kept her back to me as she whispered to him....and my voice was lost, my presence forgotten, and I took my leave feeling foolish for thinking I might have found help with a man I love as only a daughter could.

With in my makeshift shelter I listen to my children play and argue and hold desperately to each sound. So long as I can hear them I can heal, I can continue to fight, I can take another breath without finding the air tainted by the darkness that seems to slowly be consuming me.

I find myself wondering at my long held faiths, at the ideas I have found solace in time and again over my life. So I turn my face away from the pain and look to God and ask for guidance as my body fails me, my support system crumbles, as family politics become more important than the truth of the one thing I still find to be true...that I still hold faith in unshakingly the simple purity of loving all of them. They are safe in turning their backs to me, in leaving their soft places unguarded. Not because I am unable to drive a dagger between vertebra, but because I will not.

My Moon

April 20, 2010, in the bath, on paper...and now here

I live in a world with an unpredictable moon. My tides are defiant and headstrong and too often filled with jellyfish.

I live in a world where there are teeth to be brushed, bodies to be washed, and bruises to be kissed.

I live in a world of blessings, of darkness, of too much pain.

Where the telephone is a companion tied about my waist as a lifeline in such an unpredictable ocean.

My eyes close easily enough, laying the backdrop for my dreams reel to reel play back. Action packed adventures that leave me more exhausted.

Some times I look to the Earth bound moon and wonder at her stability. How effortlessly she moves; commanding the seas and oceans of men while guiding our inner comings and goings with a mother's touch.

To watch her wax and wane without me - I feel very alone. Seasons pass within and through me but they have lost the rhythm Nature set. The Father and Mother tap out the beat, but I am too far to fall into my place in the dance.

It is lonely and cold as my uncaring false moon plays a ragtime rhythm with what used to be my cat. Each clawed out note reminds me of what I have lost.

I look to the sun, proud and unattainable, and ask him if I should carry the burden of missed steps, or if it was really the fault of the dish and the spoon.

I no longer know if it his silence I hear or if it is the sound of my bones on the rocks below.