Day 285:Five years ago

mom

This summer will be the filth summer since she was diagnosed with breast cancer. My sister calls that year our family’s Year of Hell for good reason. She was diagnosed in June and during her first week home after her mastectomy in September my dad had a heart attack from the stress of worrying about her.Thankfully it wasn’t fatal but as a result both of them were out of work for a while.   My mother’s hair fell out from the chemotherapy and because of this we rewrote the Fuzzy Wuzzy rhyme. Our version is Fuzzy Wuzzy was a bear/ Fuzzy Wuzzy had no hair/ Fuzzy was a chemo bear. While doing chemo she got shingles. Yes shingles on top of chemo is as awful as you think. But this summer marks my moms filth year year with no cancer cells present. For those of you unfamiliar with cancer treatment , after the initial course of treatment is done a cancer patient must see an oncologist at least once a year for next five years to make sure the cancer hasn’t returned. It is only after five years of negative tests that a person can be officially declared cancer free  When it becomes official in June I plan on getting a tattoo of military combat boots with breast cancer pink laces with her initials and the official cancer free date and  the words free at last underneath since my mama was a soldier through most of my elementary school years In fatigues or out she the world’s most hardcore mama

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Day 284 : My Wheelchair Should Not Define Me, Either As Asexual or As A Goldfish

English: An image of a Common goldfish

English: An image of a Common goldfish (Photo credit: Wikipedia)

 

My whole childhood and adolescence I’m pretty sure my grandma believed I’d end up a spinster she thought this in spite of the fact that I had a boyfriend in high school. Why? Because in the era in which she she grew up the only disabled people who were treated with any kind of personhood were the injured soldiers returning from World War II and other military veterans. Those of us born with severe medical differences wee expected to content ourselves with never living as a person outside of our mediated family   if we were lucky and being stuffed into an institution if you weren’t so lucky, or the worst luck of all, to be killed outright.In her day we weren’t expected to have any education beyond what a person’s may or may not have taught them at home. If a person is not expected or given the tools with which to make a life for themselves how can they include an outside person?I try not to be to upset with my grandma because at lwast she didn’t advocate that my parents turn me over to foster care when I  was diagnosed with Cerebral Palsy.

As previously mentioned I had a boyfriend in high school. I’m sure this would have comment worthy by itself to my peers but the fact that he was also in a wheelchair made extra intriguing I’m sure. When we slow danced with me sitting in his lap I had a sympathetic twinge for the goldfish  living in a fishbowl. The Monday after prom I  heard a rumor  going around that I had lost my virginity over the weekend. It was just a slow dance folks. Yes I suppose we could have done things differently, I know a few people who can pull off couples dancing in wheelchairs with passable rhythm and style but neither one of us could. Plus as my boyfriend’s mother pointed out when she put me in his lap,”every other girl in this room is allowed to be close enough to her guy to put her head on his shoulder, why should you be any different? Looking back on it I’m almost certain she told a few of the chaperones that, because despite more than a few dubious glances our direction not a negative word was said.

I have also had the experience of  talking with a stranger (sometimes a guy sometimes not) and after the almost obligatory “what’s wrong with you?”  (or some form of it) the very next thing they ask is “can you have sex and how does it work if you can?” What I should say  is “the only people who need that information are my doctor and the person or people I choose to sleep with’ and walk away. For the record it’s never happened that way not once. I usually sigh and answer yes I can and NO you can’t have any details.  None of the able bodied people I know have ever been asked such a thing  in a grocery store by a stranger. Where did people  get the idea that its ok to ask  a stranger about their sexual practices without even knowing their name as long as they are disabled? Some things I will never understand.

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Day 283 IV Needles and Tattoo Ink or How My Dad Came to Be Ok With My Ink and Other Observations

At this point in my life I’m pretty sure that the number of  times I’ve been poked with a needle during a medical procedure is more than the number of birthdays I’ve had.  I started kicking the idea of body ink around when I was about fourteen after  one of my surgeries put me in the hospital  for a month and left a very noticeable scar down my back.My parents aren’t anti tattoo so much as anti stupid tattoo ,which in my dad’s mind means a tattoo that a person just for the sake of having a tattoo. My mom thinks  agrees and often adds,(because she’s an artist) , that something that is intended to be permanent should be well drawn .  Her major stipulation was that she go with me to meet whoever I wanted to have the tattoo done by and see examples of their work before getting my done. She wasn’t going to let just anybody with a tattoo license near me. My dad’s only  major stipulation was we could not get a tattoo before the age of eighteen and we had better not expect he or mom to sign a consent form for a tattoo we wanted before that, if we wanted one bad enough we’d wait.

My folks  don;t think that getting tattooed makes you tacky, classless, or immoral, they did however point out that tattoo removal was often more expensive and a lot more painful than getting one done in the first placce if we decided we didn’t want it later. Even though both me and my sister discussed tattoos growing up I believe I was the first of the two of us to tell our parents that I  would get one someday. My dad doesn’t get the attraction lots of people have to ink because he personally has a strong needle phobia, so when I announced this his response  was to ask me why. To be honest  my thought process hadn’t gotten past because it would mark aas different in a way I could be proud of as opposed to the way  my disability made me feel, when my sister spoke up,”Look dad,  she’s been poked with needles her whole life without much choice either way. At least with a tattoo it would be because she wanted it and something  pretty would come out of it this time instead of a scar.” And with that my sister got the “Best Sister Ever” award and the last word.

I didn’t get a tattoo until several years later and dad didn’t see it for several  days after because he drove truck during the week and didn’t come home before Friday and I  had it done on a Wednesday. I remember he hugged me took two steps away because he was looking for mom,took two steps back, looked my arm,”Does it wash off?” “No.”Looks at mom, “You took her.” Not a question. “Of course I did, she can’t  drive.”Long pause.  “It’s pretty”

Since then I’ve seen and heard  both my folks defend my ink to my grandma who Does think that having ink makes you tacky and classless because both of them have noticed some unexpected ‘Side effects” to me having a tattoo. It is an unfortunate reality for lots of people with physical disabilities that we are often mistaken for much younger than we are. I’m 29  next month and even though still get carded occasionally if I’m wearing short sleeves (my tattoo is on my upper arm) they never check to see if my i.d. is fake anymore. There has also been a significant drop in the number of people who talk  me like I’m. five, who knew  ?

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Day 282: Rape: It Happens to the Disabled Too

A white ribbon to commemorate the National Day...

A white ribbon to commemorate the National Day of Remembrance and Action on Violence Against Women. Right-to-life Awareness. White Ribbon. فارسی: روبان سفید، نماد بین‌المللی آگاهی و توجه به مبارزه با خشونت علیه زنان است. (Photo credit: Wikipedia)

Rape culture is so prevalent in American society that most of us unknowingly endorse it regularly. The girl who gets raped while drinking too much is not to blame for her rape because she chose to ignore the limits of her alcohol tolerance, the rapist is at fault. A woman gets raped walking through a seedy neighborhood at night, gets raped along with having her purse and wallet stolen. She is not at fault, the thief/rapist is. A person gets an 11 year sentence (as much time as the judge could legally give him) for raping his then 14-year-old severely disabled daughter (she can neither walk nor speak). The reason he got off with such a light sentence? In the state he was tried in the accused can get a tougher sentence if the rape occurs during a burglary, if you tie up, otherwise restrain or incapacitate the victim. None of those things happened because none of those things needed to, the severity of the young woman’s disability made it all too easy and because he chose a victim whose own body incapacitates her so that he doesn’t have to he gets a lesser sentence? I shouldn’t have to explain to any legislature why that is wrong, I am at least gratified that the judge who heard the case gave him every day of the max sentence possible and stated that he would have given him more if he had the legal means to do so.

 

I am not as physically disabled and that young woman a fact I am very grateful of, I can hit, scratch, bite, screams “RAPIST” at the top of my lungs for anybody to hear. I can communicate with those around me so that my assault i can be dealt with as soon as possible. I a would not have to wait for my mother to go through my stepfather’s phones looking for evidence that he was cheating to find the video he made up my rape . I may not be able to do a lot of things but reading that story makes me extra grateful for the things I can do. I believe that rape of minor children and the disabled should come with an extra sentence, no matter what method of restraint the perpetrator did or did not use, no matter where the crime was committed and I believe that all rapist should serve mandatory prison time no matter their socioeconomic class. If you think my disability makes me biased you’re damn right. That could have been me.

Part of  Gene O’s Feminist Friday conversation

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Day 281 Life, Death, and Disney : The Remix

Meeting Snow White, The Prince and the Seven D...

Meeting Snow White, The Prince and the Seven Dwarfs (Photo credit: Castles, Capes & Clones)

I first heard the word cancer connected to someone I knew when I was 10 or 11 years old. Anthony was a family friend who had an on-again off-again battle with leukemia for a large part of his childhood and adult life. I think I knew Anthony for a little over a year before I begin to suspect that he might have been sick with something and that maybe that was why he never  took off his baseball cap, even indoors, even in the middle of summer. I’ve lost count how many times my parents have told me “you’re too smart for your own good” and that is one day  when I wish I had been wrong. My folks  explained about  how cancer in general, and leukemia in particular works. For a while I sat still in the statue, processing the fact that my friend, who always let me beat him in our “swordfights”with foam weapons  which he would fight kneeling to make up for the fact that I could not stand, who always seemed to have just enough change in his packet to pay for two sodas out of the machine in my dad’s comic store, was going to die and there wasn’t anything anybody could do about it. He died before the next year ended. He spent the last two weeks of his life  in a coma on life support but the day before he slipped into the coma  he drove to  the comic  book shop and hugged me goodbye. To this day my dad and I believe that he drove there specifically to say goodbye to me.I don’t remember cutting my hair beyond the smallest trims  until spring break my freshman year at college. I suddenly knew that I would cut off my hair every few years  and donate it  to be made into  wigs for cancer patients. Every time I get my haircut I always tell the stylist about Anthony. My sister took me one time while were we both in college  and afterwards over lunch she told me that she had not previously known I had a particular reason for cutting my hair. This didn’t surprise me because Morgan is two years younger than me and wasn’t nearly as close  to Anthony as I had been.
What did surprise me  was that my dad had not had the slightest clue about my reasoning until my sister told him. I think we must’ve been on spring break again when she took me to get my haircut that time because I remember dad coming into my room at home shortly after I had gone to bed and telling me that Morgan had told him about the trip and about the things I had said. He told me that even though I had been doing it for years it had never occurred to him that Anthony was my reason. He also said he was proud of me.
There is one other thing I do remember Anthony and you, my blog readers, are witnessing it. Anthony died at the age of 24 and so the year I turned 25  I started what would become, though I did not know it at the time, a series of posts titled “Life, Death, and Disney.” In case you haven’t read the other posts the Disney  part is a reference to the fact  that the baseball cap  he always wore  had  Snow White’s seven  dwarves embroidered on it.I write the posts as a means of connection and so that people will know that an awesome person lived and died and in that brief span of 24 years made the world better than it was when he came to it.I believe that is a life goal everyone should have.

 

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Day 280: If I Had a DeLorean

Delorean

Delorean (Photo credit: Wikipedia)

 

Written for the Daily Post’s Weekly Writing Challenge.

 

I love the Back to the Future movies. I’ve watched them about a thousand times each. Over the past  year I’ve wished for a DeLorean at least as many times. As of this writing  a good friend of mime has been dead almost two years from illness related to contracting Lyme disease from a tick bite on a kayaking trip . It was misdiagnosed and he missed the two week window in which antibiotics could have cured it. He was lucky that he lived another five years afterwards because most people who miss the antibiotics window die.within weeks.I remember the day  Nate told me that the doctors had finally realized what was wrong and what  that would eventually mean. In that instant I knew how Prometheus felt,chained to that rock as the bird ate his liver except it was my heart If I could I’d go back and beg him to skip that trip, consequences to time and space be damned.

Always in my heart

Always in my heart

 

 

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DAY 279: Into Every Life a Little Rain Must Fall

English: White lily Русский: Белая лилия

English: White lily Русский: Белая лилия (Photo credit: Wikipedia)

Spring is here again. It happens every year this changing of the seasons, but as the wheel turns again towards the annual rebirthing of the Earth I can’t but think of those who won’t see this spring. Some people view grief as something to be worked through and eventually left behind. I wish I could see it that way but I can’t. Recently I saw grief described as “loving someone who is no longer alive.”This is by far the most accurate description of grief for me and why I refuse to apologize for the tears I shed for people.
In Remembrance:
Charles Quentin Prophet: Best Great Uncle Ever. We’ll go fishing someday.
Eugene Prophet: I couldn’t ask for a better great grandfather. Lots of people from your generation would’ve been less than accepting of my disability. Thanks fpr lovimg me as is.
Betty Prophet: The Cat Who books aren’t the same without you to share them with. I love you.
Mary Kathrine Megar : Neapolitan ice cream and the story behind the Marlin above the fireplace.
Randy “Shank” Richards : Dad misses you every day and so do I. We’ll have that beer you missed when I turned 21 next time I see you.
Kurby Owen: The closest thing I’ve had to a second father. I miss you doesn’t cut it.
Nathan Fry: I miss you doesn’t cut it for you either, at least you knew that before you died.

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Day 278: Making a Voice From Scratch

20131205_MCA_8820_1920

20131205_MCA_8820_1920 (Photo credit: TED Conference)

 

When I was a little girl my very first friend who I recognized as “like me” was a young man named Jim. Jim has cerebral palsy to a much greater degree than I do. The only things he can move independently are his eyes and his tongue and the index finger on his right hand if I’m not mistaken. He has 24 hour care and speech using a computer program which gives him a synthesized voice. He and his family were members of my grandmothers church so my mother remembers the first time he got a communication device, the whole church had taken up a collection and then called a celebratory dinner with Jim as the guest of honor. Mom says that there wasn’t a dry eye in the building when he gave his thank you speech. I met Jim when I was four and he was in his late teens or early 20s and I finally moved that there were other people in the world similar to me. Jim has spent the majority of his life speaking through voice that is very obviously computerized. In my head the voice he uses to communicate has never fit him. In my head the mores that I always replace the computerized one with if I’m speaking to him is much like his father’s who has a beautiful baritone singing voice. It has bothered me for years that my friend has been stuck with this cookie-cutter voice that I feel doesn’t reflect the person I know one bit. Yesterday I saw a Ted talk about a project which is creating real world voices for people who use voice synthesizers. I don’t mind admitting that I cried just a little bit because there is now a chance for my friend to have his own voice and not have to rely on a cookie-cutter parrot. The organization is called Vocalid and the basic idea id this: First there is a person who wants a custom voice, this person is asked to provide a short recording of the sound they can make and that recording is blended with that of a “voice donor” to create a unique voice for the disabled person. I can’t be my friend’s voice  because I’m a girl and that would be strange, but I  have passed the information on to him and his family and I plan to donate my voice so that a girl may finally be able to speak with a voice uniquely hers in spite of having to type the words into a computer first.

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Day 277 Grove Wars Prologue rewrite: introducing female lead as disabled

 

writemonkey preference

writemonkey preference (Photo credit: kengo)

So I’ve started work rewriting my manuscript now that I have decided to make the heroine disabled. I also downloaded WriteMonkey a minimal distraction writing software which you can download for free. I love it. You can change your font and background colors as well as font styles if you want. When the program opens for the first time it automatically opens into full-screen but you can put it into a window by hitting escape, useful if you find you need access to the rest of your computer but don’t want to close the program. It also has a “jump” feature which opens a window to the side that logic to search through the files on your computer which may contain elements that you want to place into the project. WriteMonkey also has a white noise feature which can be unlocked if you donate to support the project,the only thing I don’t like is that as far as I can tell there is no way to disable the Markup formatting which I find annoying because I personally don’t write with it. Markup is a system which allows for visual representation of format, such as a pair of asterisk around something which would be in bold text or underscores around something which is supposed to be in italics. I would much rather just be able to bold a word and see it right then instead of a pair of asterisks, but that’s really the only minor complaint I have about the whole thing. So I leave you with the first piece of rewritten prologue that I turned out in my first 15 min. of distraction free writing. Please feel free to comment.

 

 

 

The sound of her alarm clock startled her awake. By comparison the seagulls she often heard cruising past outside her windows were down right melodious. Her “second alarm” was far more pleasant. As she fumble for the snooze button she found herself nose to nose with 60 odd pounds of Golden Retriever will upon seeing her eyes open began to bark enthusiastically. “Okay, okay I’m awake I promise. Go get the chair Reid.” Quick as a flash, the dog had hopped off the bed and across the room, cheerfully retrieving a wheelchair by means of a rope attached to the bar across the back of the chair. For his trouble he received a thank you and a quick pat on the head before continuing on to fetch her a sweatshirt and a pair of jeans. An hour later they left, both sporting backpacks ready to take on the brand-new world of college. It wasn’t until much later after all of the action was said and done that she remembered the forgotten umbrella by the door and wondered how different things might have turned out if she had only remembered it.

Authors Note: Reid was my second choice of a name for my Golden Retriever. I didn’t know for sure until I saw him whether Reid or Gideon would fit better. Gideon won but fictional Reid the Golden is mine pen and ink homage to my buddy.my-sig-23

 

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Day 276: In My Own Image, Sort Of

i based my female lead's looks on Keiko O'Beian from Star Trek TNG. i

i based my female lead’s looks on Keiko O’Beian from Star Trek TNG. i

I think I may have mentioned that the lack of disabled people in the media (book, tv, etc)annoys me. People who read here regularly are probably thinking  This again really? I freely admit to having a soapbox when it comes to this. Imagine my surprise when I realize that in over a decade of fiction writing I have only  written two disabled characters in my whole writing life. i have heard the writer’s axiom “write what you know” but I’ve avoided writing characters like me for several reasons, the biggest of which is that I’m afraid writing a main character with a disability would mean less interest  in the story from perspective publishers and/or fewer readers once it is out there. But then aren’t I feeding a trend I hate? So after much thought and a video chat with the #1 Beta Reader (AKA Mom) I’ve decided to rewrite the female lead as a wheelchair user.She isn’t a carbon copy of me because she wasn’t to start with and the only things I’m modifying are things related to her disability (the apartment floor plan, using hand controls to drive etc.) the main storyline won’t change much.  I’m more than a little nervous about the how the rewrite might change people’s view of the story but nothing gained right? Who says a disabled person can’t be the hero in a fantasy adventure?

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