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ferineAlright. Enough's enough!
I've been despondent for too long. On the surface I've held it together, while internally I've been all over the map. My inner turmoil makes sense--I have a rare chronic neurological/neuromuscular disorder whose diagnosis remains in question (at 18 doctors finally settled on Friedreich' s Ataxia, but have begun to doubt this--not that it matters, as it's still one of the surprisingly wide array of nerve disorders under the umbrella of muscular dystrophy); the added aches and pains associated with aging with a disability; sagging self image as my body becomes fatter, less capable, weaker, and deformed (fingers curling against palms to form paws, scoliosis sharply pronounced); loss of the ability to draw (art was a cornerstone of my identity); isolation due to inability to independently travel; reliance on others for my physical needs; the ever-present looming concern of how to survive without parents and when to "pull the plug" on myself, so to speak.
Because this despondency makes sense, because these are real problems that aren't going away, they are all the more difficult to integrate and accept. More importantly, to rise above wallowing and to produce art again--art in the form of words, ideas, stories. I've come to realize what a unique position I'm in: I don't need to write for an income. I can write free of constraint or concern, write for myself and anyone who might enjoy it. Being a published author doesn't make one a better writer than the non-published, nor should being published be the ultimate goal of the writer. I know, for the writer seeking self-sustenance, being published and procuring an income is wholly important. For me, though. it's not. SSI and Medicaid prevent me from an income; were I to, the SSI and Medicaid would cease, and without those I would be unable to pay for my medications, wheelchair (and fixes and upgrades to), necessary equipment (such as my hospital bed, shower chair, raised toilet seat, grab bars, etc.), home health care, and any surgeries or emergencies.
I've been officially published, then self-published for a time. In the early '90s I joined a writing group in Denver and we self-published a thick anthology titled One In Ten Forward--it contained sci-fi, fantasy, cyberpunk, and urban fantasy stories and art featuring lesbian and gay main characters. Our writing group was fed up with the amount of said genre fiction largely defaulting to the gay characters being doomed, the relationships ending tragically, or the gay characters portrayed unrealistically. I hadn't thought of that book for years until yesterday when I was discussing a related subject with a friend. And I think it's still relevant, even now.
So, I'm going to share stories here. For free. For fun. For me. I'm not interested in critiques.
Also...
To cease comparing myself to past triumphs and deeds, to stop this constant internal dialog: how cool I WAS, to embrace those selves with my current self, to move forward, I propose a ceremony. Something from the gut. Something primal. I want all of my friends who can be there to be there. This may have to wait until the next Gathering. Ideas for this ceremony are welcome. Coming to peace with my previous selves--the able-bodied to the extroverted and active wheelchair user--is such an overwhelming notion to grasp. I don't know how to do so, only that I must.
Happy belated birthdays to dear souls:
![[livejournal.com profile]](https://www.dreamwidth.org/img/external/lj-userinfo.gif)
jakebe - Jakebe T. Jackalope (August 6th)
primaldog - Solo (August 10th)
footpad - Footpad (August 14th)
ammit6 - aporiaseraphim (August 14th)
errantmystic - Indigo Feralspirit (August 15th)
fleetfoot77 - One day, a fox in a box, floated down into being.. (August 17th)
5arah - Bisclavret (August 18th)
And happy early birthday toekunyi!
I've been despondent for too long. On the surface I've held it together, while internally I've been all over the map. My inner turmoil makes sense--I have a rare chronic neurological/neuromuscular disorder whose diagnosis remains in question (at 18 doctors finally settled on Friedreich' s Ataxia, but have begun to doubt this--not that it matters, as it's still one of the surprisingly wide array of nerve disorders under the umbrella of muscular dystrophy); the added aches and pains associated with aging with a disability; sagging self image as my body becomes fatter, less capable, weaker, and deformed (fingers curling against palms to form paws, scoliosis sharply pronounced); loss of the ability to draw (art was a cornerstone of my identity); isolation due to inability to independently travel; reliance on others for my physical needs; the ever-present looming concern of how to survive without parents and when to "pull the plug" on myself, so to speak.
Because this despondency makes sense, because these are real problems that aren't going away, they are all the more difficult to integrate and accept. More importantly, to rise above wallowing and to produce art again--art in the form of words, ideas, stories. I've come to realize what a unique position I'm in: I don't need to write for an income. I can write free of constraint or concern, write for myself and anyone who might enjoy it. Being a published author doesn't make one a better writer than the non-published, nor should being published be the ultimate goal of the writer. I know, for the writer seeking self-sustenance, being published and procuring an income is wholly important. For me, though. it's not. SSI and Medicaid prevent me from an income; were I to, the SSI and Medicaid would cease, and without those I would be unable to pay for my medications, wheelchair (and fixes and upgrades to), necessary equipment (such as my hospital bed, shower chair, raised toilet seat, grab bars, etc.), home health care, and any surgeries or emergencies.
I've been officially published, then self-published for a time. In the early '90s I joined a writing group in Denver and we self-published a thick anthology titled One In Ten Forward--it contained sci-fi, fantasy, cyberpunk, and urban fantasy stories and art featuring lesbian and gay main characters. Our writing group was fed up with the amount of said genre fiction largely defaulting to the gay characters being doomed, the relationships ending tragically, or the gay characters portrayed unrealistically. I hadn't thought of that book for years until yesterday when I was discussing a related subject with a friend. And I think it's still relevant, even now.
So, I'm going to share stories here. For free. For fun. For me. I'm not interested in critiques.
Also...
To cease comparing myself to past triumphs and deeds, to stop this constant internal dialog: how cool I WAS, to embrace those selves with my current self, to move forward, I propose a ceremony. Something from the gut. Something primal. I want all of my friends who can be there to be there. This may have to wait until the next Gathering. Ideas for this ceremony are welcome. Coming to peace with my previous selves--the able-bodied to the extroverted and active wheelchair user--is such an overwhelming notion to grasp. I don't know how to do so, only that I must.
Happy belated birthdays to dear souls:
jakebe - Jakebe T. Jackalope (August 6th)primaldog - Solo (August 10th)footpad - Footpad (August 14th)ammit6 - aporiaseraphim (August 14th)errantmystic - Indigo Feralspirit (August 15th)fleetfoot77 - One day, a fox in a box, floated down into being.. (August 17th)5arah - Bisclavret (August 18th)And happy early birthday to
ekunyi!