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”

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(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)