My Harrowing/Hero-ing

Walking Away: A Self Portrait in Red, photo by Valentina Kaquatosh, 2015

“Walking Away: A Self Portrait in Red” photo by Valentina Kaquatosh, 2015

When I take action to control my life, I’m told I’m being manipulative. When they say I do not inform them of my life plans, it means they wanted me to ask their permission. When I decide what I want to do, it’s not done against anyone else’s will. When I ask for help, I am not asking for everything. When I ask for assistance, I am grateful, because there are things I cannot do for myself due to abilities I lack. I ask to be useful in return.

…and here’s where it gets personal.

It is not my fault when my help is refused. I am not your burden when you took me on as a “project”. I am not a project. I am a person, and I grow, I learn, and despite disabilities, in order to be happy, I have to help myself, do for myself, and not subsist on the crumbs public assistance assumes will leave me healthy.

I never ask anyone to break their back for me. I never lifted a hand to swipe away your bread for mine. I never got this depressed and sick in order to live lazy. When I volunteered at places I loved to work at, with people I loved to work with, it’s not my fault they turned me away because they thought the work was too hard on me, or maybe they thought I became a burden, too? If I cannot even volunteer, what use am I?

When I lost friends, those so-called pals told me they dumped me because they wanted to remember me as I was before I lost my health. But I am beyond pleasing them showing how crazy that made me feel. And when I could not fulfill deadlines for projects of my own, my passions were dying, I felt my fire flickering, my heart burning… What does it matter if I fail or not when I am considered this burden?

I cannot be a burden. It’s too heavy. I have to lose this weight. Not in the physical sense, but as in this weight of expectation. No more will I let my father tie me to the ground and shape my body into nothing but fat. No more will I let anyone sink me into mud whenever they give me looks of disgust like that. I am not this weight. My body is more than fat and meat. I’m not this heavy thing, yet…

I can be an anchor.

I intend to take action to control my life, and, yes, that is being manipulative because I am cutting off these strings to be master-less. I intend to live my life as I’ve always lived, really: as I choose, by my own power, whether or not you feel it’s what you think is proper or not. I do not need approval or acceptance. I never did. I don’t exist to take advantage of anyone. If I can, and I do, I support others in return with the abilities that I have that you do not. What I can do no one else can, and in that I have great value. Let me shine. Let me be my best. Let me produce.

I am a creatrix.

I should not subsist on crumbs, or favors, or public assistance alone. The shame of disability is a shroud created for me once diagnosis rears its ugly head and all the medical expenses pile up, keeping me a slave to an insane little budget, but how else to live when I have to maintain this balance? I no longer fit the mold. Since I cannot do as all the rest, what use is there for me? Do I forfeit all my learning and talent and remain in my closet drawing pretty pictures no one will see? So what shall I do? Wait to die? For years this body has rested underneath the burden of being a burden, practically the word alone “disabled” is enough to shame me into permanent instability. I am not disability itself. I am my own person. I am myself. Don’t mock me or tell me I’m this burden on society, or that my illness means you’re obligated to nurse maid me to Hell. I am not a crippled child who needs to lean on you in that fashion. Who said you had to work for me? Or fix me? It’s not your job.

While on disability, I’m not unemployed, I am working for myself.

When I choose to stand up for myself, I am not putting anyone down. When I decide to try something new, I am not abandoning help. When I ask someone to let me go, I am not asking them to dump me. Stop beating me up for being me. Quit hurting yourself taking responsibility for me. I never asked you to take my job. That’s always been up to me. Someday you won’t ever have to worry. It’s okay to think like you do because you really think it’s because you care. But it’s not helpful.

I am strong. I survive. I work my way through many tough things. But even when I am alone, I realize my survival has been the sum of many peoples’ assistance through many years. Even in my solitude, I am not an island.

I want you to know, I am not this so-called burden. Each time I’m called that, I think I die, and sometimes I thought I did, but each time I bounce back, I know it’s a lie. I grew up angry. How many women like me are told the same thing? How many lose their lives trying to work their way out of being a burden? How? Why?! I suppose I’m to feel guilty for everything they did for me when I couldn’t do anything in return, and they knew I didn’t have the means, so why did they decide to make me a burden? Does it feel good to stab themselves for picking me up when they knew I was too heavy? Because I’m not stabbing them. Just like they accuse me. I don’t do anything! All day, oh, yes, I sit here and project nothing. Especially not that.

Once you realize I am not a burden, you’ll be on to calling someone else the same thing. By then, I hope, I will have forgotten the sorrow of it, yet for now it is not a nothing, it is something I choose to toughen me up. I do not like getting like that. I like being soft, but like so many of you have told me,

  • “it builds character”


(not addressed to any one person, or organization, but written for all the women like me who are striving for independence while living with a disability)

In Case You Forgot

If ever any friend of mine has ever felt I talked over them, ignored them, told too many stories that weren’t true about them, grabbed at them too much for their attention, made them feel second best, or that I shoved them aside because I had something else going on that was more “me-centered” and it hurt their feelings, please know that it was never my intention to make you feel disregarded, or disrespected.

I’m too excited when you’re near me, I don’t know when next you’ll go, so I’m anxious to tell you everything I’m thinking because I so easily forget it, sometimes way before you leave.  I can’t let you leave before I get the chance to share with you all the wonderful things I’ve been saving up while you were gone.

I forget that you are just as excited to share as well.  I don’t know how to listen to you.  My thoughts are racing.  I’m sorry.

I’m alone too much.  I know no other life.  The world all around me is too wonderful and too much.  Everything spins me around.  I’m turned on all the time.  Even my own voice is on volume 10.  I can look at your face and not hear a word you’re saying because I’m distracted by the scent of your skin, the bands of light in your eyes, and, look over there!  A squirrel just darted up the tree behind you, but I can’t say anything about it because the scent of peonies is riding the wind, and when I blink I can’t understand anything for that moment you were talking.

I don’t dare ask you to repeat what you said.  It’s embarrassing to admit I blanked you out. You’re going to hate me for doing that.  You don’t deserve to be blanked out.

I can’t tell just any tale about you.  When I talk about you, I will make you fantastic.  I will worship you a hero.  I will breathe into you the poison of a monster if I’m angry with you.  You’ll always be poetry to me.  I won’t name you.  You’ll always have many different names.  I’ll dress you up in costumes.  I do this to avoid reality.  I suppose it’s unhealthy at times, yet it’s too fun to quit.  Try to guess who you are.  You’re all my friends.

You are fantastic.  Let me like you.  I know who you really are off the page.  But let me dress you up some more.  Because I don’t get to play as often  anymore.

I don’t know how to get your attention.  I don’t know how other people do it.  I always think I need a gimmick.  I have to perform.  That’s what I do whenever I’m in public.  Me alone is not enough.  And I can’t let the space between us be silent.  If you’re too quiet, I panic.  I don’t have your attention.  You’re not responding.  I have always had to fight for attention.  I go over looked if I’m not dramatic.  I gotta stand out and shine.  I must entertain you.

I don’t know how to show or return affection.  I really don’t!  I have never understood it.  Giving hugs and shaking hands is uncomfortable.  I never know when someone is sincere when they are touching me.  People touch each other for all kinds of insincere reasons, but when I touch, I am for real, and I pick up all sorts of unsavory feelings from strangers.  No one gets that.  They don’t operate like I do.  Do you know me?  Or do I have to touch you in some special way, and if I do, will I find out if you really like me, or not?

When I reach out, it’s an awkward dance — was that a real hug of comfort or when you were saying hello, you were really telling me good-bye, right?  Like when some people say ‘Let’s do lunch sometime!’ and ‘We ought to meet up…’ and not really mean it, yet I always take it literally and believe it, especially the ones I really want to like me.

I’m alone.  It’s the only way I know to be.  Only way I’m confident to be.  But even I can reject myself…  I should not do that.  We all only have ourselves in the end.  No one else gonna take care of you, who else will love you most?

Do you know I always have to give myself something to look forward to in order to keep going?  I’m so busy pushing myself and patting my own back that I forget to see you giving me support.  I get caught up in my sorrows, hurts, and past complaints, I can get lost within my own shadow.

And I am always somewhere supporting my wounds,  not doing enough to support my healers.

Healers need healing the most.  Because they do the most work.

I take a lot out of my healers.

I’m difficult without wanting to be.  I wish I wasn’t.

I don’t know how to listen.  I can’t listen to you.  I’m in a cloud.

Every night I torture myself with thoughts of what I could have said, or should have done, and talk to myself like I would talk to you if I could talk to you one more time before I sleep, as if you are there in the room with me, so I can make things right with you. And every night I cry because I pray so hard that somehow my wishful words could reach you and bring my love to you so that you never again feel like I don’t like you.

Don’t get caught in your own shadow.  Remember, somehow, remember, despite what you think you swear you may know about me, I’m in my dark corner of the night unable to sleep, saying out loud my “if only you were here’s” and “what I would do different’s” but knowing that when you break away…

When you say it’s “for now”, it really means “forever”, and I lose track of everything with you not in it.  So continue to be in my everything, because you mean so very much.

Without you I would not have been able to crawl out of the pain hole I fell into when my baby boy died, when my mother died, when my aunt died, when my roommate died, when my boyfriend died, when so many others died, and, when I died you revived me, took me to the hospital, held my hand until I woke.  Thank you for being there when no one could be and refused to be.  You were there when my heart got broke a hundred times.  You stayed up with me all night to talk about all the boys who used me.  You were the God who carried me home.  You were the Goddess who tucked me into bed.  Yours were the lips that kissed me on my forehead and bade me many wishes well.

Thank you, a million times, thank you.

Don’t forget!

— For Mindy

It Doesn’t End

In my memory, it doesnt end, we just stay there, looking at each other, forever..

It really feels like that. Whenever I go to bed, and whenever I rise in the morning, I still got my boy, Mr. Snuggles, his eyes on my mind.

I also got new eyes staring back at me, but, oh, they come with a pounce and needle-toes demanding I set my mind on the here and now.

I love how two cats touch my life like that.

Postcard #49: Getting Lost is Part of Discovering Nothing is Lost

I am wondering and wandering, dreaming of places and people, my mind resetting itself, my moods resettling, hope is resurfacing. I still wish. It’s not a sin to wish. And it’s the wish that pushes me through the woods, out the back door, floats me to the top, the strength that sets me standing on my hands, holds me in the boat, cradles me in sleep, and guides me out of my dreams into a waking that is doing. I do not mind getting lost. It is a loss of time and space that takes me away from all the heaviness of the world — a loss I never mourn — I take time, I take space, I move at my will, have all of the wild at my pleasure, loosen the ribbons, slip off this gown of iron burden, and tramp along the shore to the destinations of all my imaginings. I want to lose being found. Go missing. Be kidnapped by goblins. Fall into rabbit hole. Seduced by faeries. Side-step into a mist, and yet, not be forgotten…

I stumble back into place. I do not want to lose myself. All the dizzy delight of getting lost can only go so far. The winter silence sends me wishing as it always does when there is not enough doing to be done. All there is is white stinging my eyes in the morning, and the afternoon snow is gray-slate-matte-boring.

Getting lost leads to wondering alone into being alone, lost alone, yet everyone’s alone in wandering alone lost. Is being lost mean having something to find? What if there is nothing to seek? I lose myself when I chase after what is missing, only to find myself waiting for me when I discover what was lost was always there inside, waiting, taking a reach into my own heart to pull out all the losing, loser gear I carried around with every sigh I thought I let out.

I don’t let the stranger me be strange anymore. She’s the spirit in flight with a base to land on. I am earth-bound and freedom-soaring, like Hawk-on-the-Wind that is my family name, my people’s crest, both my parents’ totem bird, a thing thought lost I did not know was there, only a thing of whisper, a meaning no one told me. Every time I asked for meaning, I was given questions. Irritating! Why were they forcing me to go on a journey? I don’t want to go anywhere! Give me the answer, NOW. But the meaning would not have the meaning it has now until I stepped away, ignored the path, rejected my purpose, and chased after someone else’s dream…

I am in love with my wishes now. Yet I have a new wish. Just one simple wish: don’t lose me when you decide to get lost.

Postcard #47: Home is the Safest Place to Cry

There is no greater healing balm than the comfort of bed. I spend many of my days there lately, simply over being sad, nothing more.  The days have grown dark.  There is much dying and dead.

And everyday the deeper the dread.

Not because the end of the world is nigh!  Nor does the upcoming Winter Solstice bode for me any significance that the world will end.  It just means another world transition, but a time of anxiety for a great many people lost out there in a world far from me.

I am quite comfortable to keep my problems and tears confined to my little place.  My tiny disasters mean nothing to the pains of others.  When I was a child, I had been told to keep my cries hidden, quiet down, become invisible, and shut-up-right-THIS-MINUTE else anyone should think somethin’s was wrong with me and all the other kids were not to speak to me until I stopped crying.  If I accidentally slipped out a sob in public, I’d face punishment at home and in school, not allowed to speak or be spoken to, and be the first to go to bed early.  After awhile I learned to appreciate being alone because it meant I could write and draw, create an interior world for myself other kids didn’t have.  As I became an adult, I worried and wondered why I never outgrew my “crying fits”.  At odd moments I’d cry, people become afraid, or they make a fuss over me, to this day no one knows how to help.  So, like me, you learn how to help yourself.  You take yourself home and sink into bed and hope for a long sleep to take the pressure off.  Plus today the therapy and meds go a long way, of course!

Many friends would be upset to know how often I cry, or they will be annoyed.  “There she goes again,” I can feel them roll their eyes and the ridicule drives a splinter into my gut, because I have been through the accusations of manipulation several times before.  Even in childhood I was accused of crying for attention, adults slapping me away and ordering me to go to my room, telling my mother not to bring “your daughter along” because I brought the other children down.  And no matter what I did then, as now, the more I explain, the worse it gets, my words do nothing to convince people I’ll ever get better, or that I’ll remain worse, it comes and goes in waves.

I am a constant shifting, blowing, raining, storming sky, a force of nature.  Not unhealthy, powerful, not dangerous, just interesting to handle, strong when I’m weak, and equally sensitive and nice at peace.  There are times when I don’t think I’m ill at all.  Normal most of the time, and yet…

In the darkness, just when I take off my shoes and drop myself on the floor for a weep…

It is good to know, someone stopped by, left a note, emailed a message, called, or better yet sent me a little something in the mail.

Even in a city where so many people abound, there are not enough smiles or kind thoughts expressed.  The pressures of not-being-home where ever you are when you’re not “here” can make you catch your death.  The loneliness builds like the end song tempting you away from bed into the grave.

Better to lie in bed than in the grave.  Catch me?

Postcard #45: Celebrating Friendship!

“Friendship should not be mourned,” They said.

And when I say, They, I do not speak of People, or voices that may populate my head.  I talk of They that travel on the wind, whisper unseen, guide the lost when they stumble, and sometimes purr through the cat who shares my bed at night.

“Friendship should not be mourned,” They insist, keeping me awake when I want to slip into a nap this afternoon, “Friendship has no funeral. It requires no grief. It should not be mourned. You must celebrate it!”

Pick up your favorite pen, Valentina, my fingers ache with longing, and my back burns with hurt as I stretch and strive for a comfortable position, groaning as I seek my journal, find a page and make your mark so this won’t disappear. Don’t let these thoughts go! Come on, get going, make it so!

Out the words flow — ! My handwriting a river I fall in love with every time I give a damn, I set my pen in motion, the very act of holding it (although pinching my fingers and strains my wrist up to my elbow) is a flight through water, like Antarctic birds do under the ice in the deepest, darkest, undiscovered places. My pen is black and silver, shines in my hand, sharp and slim as a dagger, but does not cut paper as my every drawn word appears thin, small, and slants distinctly stiletto to the right.

I once challenged my friends with my handwritten letters… My handwriting, considered fancy and too archaic to easily decipher, only friends with a curiosity I could pique for Graphological inspired Cryptography (a pseudoscience that I thought I had made up when I was in High School), or who had a penchant for recreating the sort of 19th century literary correspondence our favorite authors had, would be interested and dedicated enough to read, let alone appreciate my letters. Such writing made for excellent handwritten essays only professors lavished attention upon, and I would sigh and dream of a day when I could enjoy a romantic friendship worthy of all my handwritten sentiments. Who did I kid? My rivers of right-slanted, sharp-emoted writing would not serve anyone good but land me a role only worthy to frighten people away as the demented, obsessed woman who scribbles in some horror movie… almost. In real life that is the impression I give! I ought to change it. Yet. Now it does not matter. I write my letters to myself. Occasionally I type them as I may, as I am now, in celebration, too good to keep secret.

This is the public side of true friendship — the celebration of sharing experience — for is that not what friendship is all about, what starts the love between people, this drawing together of mutual interests, the stringing together of the things we enjoy that ties us to one another and leads us to collaborative co-existence?

“Do not EVER mourn it,” They possess my pen, and I shake with so much passion, it takes every part of me not to burst, “Dance it!”

Words escape, the pen does not drop, only feeling excites, makes me fall into bed, pillowing my every thought, They comfort and do not quit, a swooning peace, of only knowing love. I forget all ills. Mercy replaces anger. Tears all dry. A reverse Lachrymatory appears; a bouquet of white roses soaks up the river at my bedside.

“Friendship won’t be mourned again,” It is I who says this, without question, without another memory of a slight or disappointment to mar it, only closed eyes and a smile to support it.

Postcard #39: Nowhere, Somewhere

When I can’t sleep, I pace, I can’t stay inside, I embrace the blessing of being too much awake, and I walk into the sunrise.

Mist and fog slowly pull away and leave tears in million beads behind… Tears clinging to everything like upside-down-rain-that-will-not-fall. I walk through it, taking a bath with my clothes on, let it seep in between my toes, soak my pants, and thrill to the way pine branches wet with the tears slap my face clean.

My early morning spa.

In the distance, I think I see the shapes of people. Yet this is nowhere, somewhere, and I am alone…  except for the hare darting back into the juniper bush behind me.

Hours from now the heat will wash all of this away, but in this moment, my moment, I spare a second for a thought of you, and soon it evaporates into a yawn and a care for my bed and I can smell my pillows already and I want to hold my cat. I am safe now as the sunlight grows. As I step back home, the magic is over. People are starting their cars and leaving for work. The spell of seeming like I am the only person left awake in the world is broken.

But my dreams have only begun.