Would like to help, disabled myself, unique perspective

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Would like to help, disabled myself, unique perspective

Postby Pokemaster222 » Tue May 12, 2009 1:53 am

I myself am disabled and was wondering if you would like one such persons input and advice as you work on the writing for this game/novel. I have had 34+ surgeries(lost count) and have scars all over(neck, face, back, stomach, slightly above groin, legs, etc.) I think i could be of great assistence with making the characters more real. I especiallylike what you have done with hanako, for i was once aklot like her.
it is a great thing my opinion that you are trying something like this.i am an avid reader of novels and manga and this is the first serious work ive seen that attempts this and seems to be going about it in a tasteful way. I like the fact that your making something that will have disabledpeople like myself in real life situations(dating,love, sex, etc) The funny thing to me is that most disabled people i know would support this work. The people who'd be against it are those without these issues >.<
anyways,please contact me if you have any desire for my assistance. if not, i look forward to the release. :D
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Re: Would like to help, disabled myself, unique perspective

Postby Envy » Tue May 12, 2009 6:08 am

If you don't mind me asking, how are you disabled? Why did you have surgery?
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Re: Would like to help, disabled myself, unique perspective

Postby Pokemaster222 » Tue May 12, 2009 10:34 am

Don't mind you asking at all. I opened the door to that question by mentioning it :)
When i was born, i was born with Spinebifida.they didn't catch it because i was born with the version that doesnt have any overt signs. I wasn't diagnosed with it until i was 7. By the time they find it i now also have arachnoiditis.(Google it, im not afraid of spiders...) this resulted in 4 back surgeries and a scar along my back thats about 2-3 feet long.
also at birth i was born with a toxic kidney which was removed, and my other kidney is malformed and only 70% active. I am not a possible transplant receiver due to my pain meds. Also i was born with imperfered-anus and now have an illiostomy.(a lil bag on my stomach, i crap into it.) This is necesary because without it i wouldnt be able to go to the bathroom and die from not being able to do so. I've had surgery on this many times, probably 10-12.
when i was 6 i fell 3 feet off monkey bars and SHATTERED every bone in my arm up to my shoulder. I was in the hospital for a month and in an arm cast for 6 months and physical therapy for 1 year. Because of my Mom, they didnt amputate. They almost did, but she was adamant they at least try to save it. My surgeon cried when he took the cast off and i was able to move my hand through full range of motion. I have pictures of all this somewhere. I literally owe my mom my left arm i guess you could say. :D
Because of the arachnoiditis i suffer from severe chronic pain and take heavy doses of opiates for pain. I also have an intrathecal pain pumpimplanted in my stomach. Its a lilmachine that pumps meds to my spine to dull my back pain. Ive had one since i was 12 and im 21 now.
The pump allows me some level of relief and a life. I work at walmart part time, attend college part time, and try to date. That hasnt gone so well lol.
anyways thats the highlights of my medical exploits.
also, i should have mentioned this before.i was offering my services as a writer. I would offer art as well but i am wracked with tremors that make it immpossible to draw recognizable drawings lol.
Pokemaster222
 

Re: Would like to help, disabled myself, unique perspective

Postby Raide » Tue May 12, 2009 12:53 pm

You can show us how your unique perspective and experience be positively conveyed in your work, by writing a piece of fiction (or KS oekaki/fanfic for example). It's hard to evaluate on the basis of life story alone.
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Re: Would like to help, disabled myself, unique perspective

Postby Pokemaster222 » Tue May 12, 2009 1:32 pm

Beeping noises echoed throughout the hospital room. In the electric bed sat a little boy of six years humming happily to himself.His left arm was cut open from elbow to wrist and being cleaned by a nurse. He had broken his arm and due to the severity the doctors had left the wound open so they could eaasily fix and fiddle with the shattered bones. Out of his other arm ran several tubes, IV's. They were pumping all kinds of things into the little boy, things with names the boy didn't understand. As the nurse rubbed the alcohol wipe over the outskirts of the wound the little boy let out a gasp of pain. He quickly stifled it so his nurse wouldn't notice.
The little boy really liked the nurse and knew she had a hard time cleaning the wound because it caused him pain. So he tried his best not to show it. He simply sat there humming a cheerful tune and clutching the teddybear the EMT's had given him. The nurse swapped the inside of the gaping wound with a piece of gauze causing thelittle boy to flinch.
"I'm so sorry Andrew.I know it hurts but it needs to be done. We don't want it getting infected again." The little boy nodded. he didn't quite understand what infected meant but he knew he didnt like it. The last time it had happened they had put funny liquid in his tubes and made him fallasleep. When he woke up he had a funny taste in his mouth and the room was hazy. His arm had burned alot too and thats when he had seen his arm. He had poked it with his finger touching bone and muscle, marveling at how it felt. It didn't hurt, but it was interesting. Thats when the nice nurse had shown up and scolded him. She said that if he kept doing that he'd get infected again and they'd have to start over. The little boy didn't want that so he stopped even though it stopped the itching.
"Yes, i dont want infected again."Murmured the little boy in reply. "That icky stuff makes me icky." He added with a disgruntled voice and sour expression. The nurse laughed. She quickly finished the cleaning and patted the boy on the head. "You were very brave andrew, i know that must have been uncomfortable."
The little boy nodded. "Yes, i dont like it. But i didnt like infection anymore so its ok." He smiled at the lady. "Can i play nintendo now?" He asked sweetly. The doctors had told the little boy to play lots of videogames whenever possible. He liked those instructions. The nurse smiled and nodded the boy the controller and turned the system on. As he started to play alittle he saw the nurse begin to leave. He was lonely and didnt want her to go, it was middle of the night and mommy had to go home to be with his newborn baby brother.
"Nurse,will you stay and play with me? I'm lonely." The nurse turned to boy and nodded. As she plugged her controller into the system a single tear rolled down her face. such a brave little boy. She thought to herself.
Pokemaster222
 

Re: Would like to help, disabled myself, unique perspective

Postby Pokemaster222 » Tue May 12, 2009 1:34 pm

The story above is based on some events from mylife. Some of the events have changed a lil for the story but the basic facts are much the same and so is the part with the nurse playing nintendo with me in the middle of the night. I know she was thinking i was brave because she told me so. this is one of the few memories i have from that month stay in hospital.
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