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)

Postcard #34: …BAM! It’s There When You Need It

When reality unwinds, I seem lost to dream, and I cannot lift my head up anymore


BAM! My strength bounces back like the Something Amazing in a circus act waking me up from dormancy. Suddenly, made aware how ordinary everything else was, I want to fade back into that place between worlds and wish myself beside spirits I can only live with in spaces long and in between and lonesome, lovely, lost. The nooks and crannies where some humans slip and fall into, trapped like ghosts in the walls of houses, where consciousness is all you can imagine and yet is only half real, the outrageous state of half-being, a trip I do not recommend having.

I rejoice in being again when all is clear, and find my body, all this time, has been here . Today each movement mine is gentle slow and fine, my every thought blue-sharp and hungry-inspired, finger-ready to trigger the pencil and paint — this the different kind of drowsy that doesn’t draw me to the floor.

A wonder brings it home to me, that with each weakest moment, I remain unmolested by destruction, that with each touch of death, I am reborn more alive, and discover I’m getting stronger all the time.

“This is the most grounded I’ve seen you yet,” My doctor said. I stared at her thin, peach-pink lips in that cheerful, oval face with the soft mother’s chin. Her smile was genuine, cherub-like, sweet as a kiss, and I couldn’t resist believing her. “These last five years, Val, you’ve gotten so much stronger.” Her teeth interrupted her peach lips and a curl of her summer straw hair fell over her rose cheek.

“Really?” I said, rising up from the bed, the nurse tugged the IV out, and as I winced, I grabbed my clothes, already half way back home. “Really?” I said to myself on the midnight walk home, crossing through lines of gossamer, occasionally turning back to see the partial Moon. “Really.” I told myself, once home and hugged tight in the fur arms of my cat. “Yes,” I whispered into my pillow, when I lay in the darkness, smiling, “Really!”

Postcard #20: Power Cracks

Hey, come over here! I have something to tell you. It’s okay, I won’t bother you too much. I didn’t mean to get so emotional last time, or too excited, but I have to let you know something really cool. I finally got over something I was afraid of and it’s made me very proud of myself. Really proud. To some people it may be really petty, but to me it’s a wonderful discovery that just about slammed me down to the ground and kissing soil, so grateful a spell was broken. I had been struggling with that panic over Twitter, remember? It was cracking me up and sending my heart racing. I thought for sure it was a warning to hold back, but really… It was fear of being myself, of letting go, afraid to speak, and grasp my freedom, to remember my strength, and realize I had nothing to worry about.  They almost had me convinced I was a problem, that I had no more place in the world, that I was a nothing person with too many problems, someone only worth shunning, and try as I may dream, I should stay hidden and silent because I am difficult, not worth knowing, that everything that comes out of my mouth is pitiful, meaningless, and that I still need help, that everyone should know I am a problem, not a person.

Yet as I practiced attempting to expand my social network, hesitating before each time I emailed, blogged, or posted a reply, second guessing everything I wrote, only to end up writing, out of self-consciousness, poorly written material in haste and need for acceptance, I treated myself as I was once treated. And yet, as I scratched at my shell, started to crack and shake, weep and freak, it was the earth quake moment that signaled my break out. The ice that kept me frozen BROKE and I did it.

I am myself again and I have myself to thank!

“The death of fear is in doing what you fear to do.” — Sequichie Comingdeer

Like the photograph of the Lake above, the cracks that I thought were going to split me apart were really the shattering of what kept me still. The time I took the photograph was an afternoon after I had wept for hours on end, questioning everything I was doing with my life, and wondering if I mattered at all to anyone. Even Mr. Snuggles was helpless in helping me fight against this feeling. Medicine didn’t punch a hole in it either. The pain was driving me to the point where I wanted an end. It’s never about “oh woe is me” it’s about real pain, the kind that doesn’t stop, the pain that you don’t want to tell anyone about because no one can help, and I don’t want to make anyone who cares to feel helpless, or exasperated, when I report about it too much, because it is a pain that is routine, making it all the more worse. I write about it because it’s my testimony. I am telling you I’ve lived through this, will continue to live with it, and I’m not quitting just because it hurts sometimes. I could have stayed in bed for the rest of the day, yet little doses of magic go a long way.

What? Magic? Yes. I’m going to write about that soon. Magic is good for the mentally ill. It sets things in motion in a way that nothing else can. A splash of basil water, a slap of rosemary, prayer, meditation, ritual, repeat three times, dance, trance, open the body to the Gods, and a lifting up takes place, as if I have been cleared.

The trees called me, the wind rushed up at my door, birds sang premature spring announcements of mating and territory, and hares and fat squirrels were darting in and out of the juniper… Come out! Come out! Come out! So out I came, thrilling to everything, attracting people to me, smiles flashed at me, and the lake, the last of the ice was cracking, shaking, breaking loudly. See?! It doesn’t last forever this nonsense thought of you left to suffer! You’re not the cause of every mistake. Look out onto the surface of the lake and see how the water underneath is always there. Your retreat from life is unnecessary. Your wounds are gone. Time to take up your pen — your little sword — and sing. I know you can do it!

Out fly the words as the lake shakes off the ice and the sky brightens up into brilliant cobalt blue and cerulean (I’ve always loved that word, cerulean how it sounds like the name of a fantasy warrior or an alien swordfighter starring in an epic sci-fi movie) and I begin to pick up my truth again. I get back online, I face the fear, and my fear comes back at me with a vengeance just to make me remember the power I truly have over those who don’t want me to succeed at anything. I let them complain. Even though I shouldn’t, I respond to their last complaints, yet in the end, I am free. Free!  And I don’t have to do anything all over again.  The cycle is broken.  Gone.  Done.

I get on Twitter and Facebook and Gmail and WordPress and think of you and smile without a worry to trouble me. So what if I occasionally make a mistake, forget to listen, get distracted, lose my cool, and panic every now and then, right?! I am not what bothers me.  I am not the sum of my problems.  I am not disorder itself.  I don’t have to let the pain take over. I do not have to prolong my suffering. I certainly do not make it your responsibility.  But, every now and then, I reach out for a little reassurance, a sign that all this living is not for nothing.

I’m fixing me. I’m breaking out. Where ever you are, can you feel this feeling? This kind of trembling like a power surge moving through me up from the earth and up to the moon? Is it moving through you, now, at this moment?  Are you tapping into the same power and generating your own miracles? Oh, the magic is out there, my friend, and I am in love with it all over again!

How can anyone not feel that?

Tonight home is where the magic begins… where the magic IS.