Day 240: I Don’t Give A Damn About Paperwork Just Let Me Buy a Dress and Throw a Party

In a little less than three weeks I will be moving out of state to live with both my boyfriend and my girlfriend who moved in with him from Colorado a few weeks ago. Most of my immediate family are supportive of my decision or at least have the good sense to realize that their dissenting opinion won’t change change my mind and therefore keep their mouths shut. The only person in my family who is being deliberately kept in the dark at this point is my grandmother who is over 70 years old and most definitely would disapprove. She is not being kept in the dark because I fear her disapproval but because she is involved in some of my legal affairs and until I can get those changed I am better off letting her believe what she wants to, which is that I am engaged to my boyfriend and we will eventually marry. In reality though I’m not sure if we will ever be legally recognized as committed to each other largely because the commitments of more than two adults to one another are not legally recognized in the United States yet. To be honest I have rustled with my feelings on the subject quite a bit. I love them both for different reasons because they are different people but with the same level of intended commitment and it isn’t fair that because of how long is commonly written I would have to choose one over the other . That being said I find myself arguing with myself lately. Largely because of my disability very few aspects if my life have been within spitting distance of normal and a ceremony is one of the few “normal” things I’ve ever wanted id only to be able to thumb my nose at the people who said or thought my disability precluded me from committed romance.

Day 239: Sometimes You Just Don’t See The Lightning Coming or Manuscripts, Facebook And Cross-Country Running

 

I feel as though I have been running cross country for most of my life, at least mentally. Earlier in life it felt as though I were always running away from something, trying to put distance between myself and my disability, other people’s expectations of me or sometimes lack of expectation and a laundry list of other things. If someone drew a picture of my mental self at that point I would probably have all kinds of small cuts on my face and arms the needs of my jeans would be worn through and money shoes would probably look as if they might fall apart at any second. That’s definitely how I perceived myself anyway. At some point it changed though, instead of running away, trying to outdistance something I began to get the feeling that I was running toward something though if you asked who or what I was chasing I couldn’t give you much of an answer. At the age of 12 or 13 a man I couldn’t place as anyone I knew or had heard of at the time began showing up in my mind both while I was asleep and awake. Since I had begun writing at that time (mostly historical romances that I wouldn’t pay Harlequin to publish if they asked now) I assumed for years that he was a character I simply had not found a story for which still isn’t uncommon for me today. When I was a sophomore in high school I had to write a short story for class and since he was still in my head on a regular basis it seems natural that the lead male character would look like him. Fast forward to present day I am still working on that short story although it isn’t so short anymore. After I completed the assignment my English teacher strongly suggested that I expand it to a full length book. My graduating class has its 10 year reunion this year and I’m still tweaking the story. Christmas of 2011 I did something highly uncharacteristic for me and that I joined a dating site without someone twisting my arm to get me to do so. Much to my continued amazement somebody responded. I looked them up on Facebook only to discover the man who had been silently in my head for over 10 years staring back at me. If I had been sitting in a regular chair at the time this are probably would have knocked it over. In that exact moment I knew who I had been running toward for half my life.

Photo Credit : Possibly the coolest example of a Jacob’s Ladder I’ve seen was found at http://nova.innovation.rit.edu/csi2/main/node/Arc via Google Image search

Day 238: Changing How We Talk About Rape: Why It shouldn’t just be a “Woman’s Issue”

Thetis raped by Peleus. Tondo of an Attic red-figured kylix, ca. 490 BC. From Vulci, Etruria. (Photo credit: Wikipedia)

*WARNING* The following post may contain opinions which differ from your own on the subject of rape. Viewer discretion is advised.

I learned in sociology class that people are largely defined by the rules they fill within their community. For instance a person can be thought of as a neighbor, a student, someone’s boy or girlfriend. Not everyone in the community is familiar with all the roles this person may play but they all simultaneously exist. Many of these roles a person takes on by choice, they choose whether or not to work a particular job, they can choose whether or not to go to college, people choose which neighborhood to live etc. A role can however be forced upon someone. If a role defines how a community perceives and interacts with one of its members then rape victim is also able a role. Sadly enough it is an equal opportunity role with little regard for age, race, economic class, religion, gender or anything else. Guys can be raped to and not solely by other men. Rape is not just a woman’s issue. It should be considered a human issue. Nobody deserves to be put into that role. Nobody. Many times people say “what if it’s your wife, mother, sister?” Some version of this statement is usually directed at men who are saying some version of “it’s no wonder this happened with the way she dresses,” or some other ridiculous statement excusing the person committing the rape. (To be completely fair I have heard similar statements from women as well.) My question to anybody who spouts such ignorance and harmful opinions is, “if it happens to you would you still feel the same way, would you be able to smile and interact with a neighbor who made a comment like that if you were the one whose personal identity had just been put through a meat grinder?” Of course not. Rate is wrong. End of story. Victim shaming only perpetuates the issue. The only chance we have changing any is taking responsibility for our own words. If you don’t deserve to be raped neither does anyone else. Period.

*Disclaimer* I haven’t ever experienced rape first hand and I pray that remains true for my entire life. I do several people who have. I speak up for those who feel they can’t. If you have been, think you have been raped or are being raped, tell someone. Silence only gives abusers power.

Day 237: Pet Peeves

 

English: A collection of pictograms. Three of them used by the United States National Park Service. A package containing those three and all NPS symbols is available at the Open Icon Library (Photo credit: Wikipedia)

ince I read a similar article recently I thought I would post some of my biggest disability related pet peeves.. These are in no particular order and will probably number more than 10.

• I am not five years old anymore and even when I was my vocabulary was far more developed than one your using right now.
• If you see me with someone and have a question about my disability ask me rather than my companion. Being spoken about in third person is very rude. You wouldn’t like it if a stranger started asking your friend questions about you with you standing right next to them and able to speak for yourself would you?
• If you aren’t a very close friend or significant other do not lean or prop your feet up on any part of my wheelchair. You have your personal space bubble, I have mine, the wheelchair exists within it. Hands and feet off police.
• To fast food restaurants with takeout service, telemarketers and over the phone customer service representatives: I am aware of what my voice sounds like over the phone, I’m not a very tall person to start with and I’m pretty sure my disability has influenced the pitch of my voice at times, I assure you I am an adult, of legal age to both vote and drink in the United States. Calling me a liar or worse simply hanging up on me because of my voice happens to be pitched is a good way to ensure that you don’t get anymore of my business.
• To all sit down restaurants regardless of whether most of your staff speaks English as a second language or a first: I do not care that some of your waitstaff may be allergic to or afraid of dogs that is not my problem. My golden retriever is federally recognized as a piece of medical equipment which means with very few exceptions but I have the right to take him anywhere I please. You CAN refuse me and my dog access and service. Know that I CAN and WELL file a discrimination lawsuit against you within the week.
• I was not in a car accident nor did my mother use illegal substances before my birth. I do not mind discussing my disability but if you are a random stranger you asked that question with no preamble my answer will probably be something like this “I’m in the chair because of brain damage sustained during my premature birth, do you have brain damage to or are you naturally this route?”
• This kind of goes with the above statement but please stop asking how sex works for me., go back to the I was not in a car accident and even if I was that would still work okay. I am a “real girl” and neither one of my partners has complained yet.
• If you see my dog and my out shopping or at the library etc. ask to pick him before doing so. Do not sneak pet him by learning your fingers through his coat as we by, he is friendly and loves meeting new people so chances are if you ask and I’m not in a huge hurry I will let him visit with you. Like the wheelchair the dog is an extension of my personal space. You do not touch him without express permission
• I do not need to be healed. I know you mean well and you might honestly believe that you can help me by laying hands on me and praying over me. I thank you for your concern. The problem with something like sad is that in order to have any chance of success at all both the person trying to create the healing and the person being healed have to believe it will be effective. I don’t. I mean no disrespect to your religious beliefs but they aren’t mine, never have been and never will be I have spent years working on my acceptance of self. I struggle daily to see myself as simply me rather than a defective version of myself it would be better off without any trace of disability. It’s not easy and your intentions although well-meaning only serve to undermine my somewhat fragile sense of self.
• I am not a saint. Growing up I had fights with my sister. I pulled her hair. I waited three days to bite her after she made fun of me. When I was eight I had to get my teeth wired straight because of a fall I made a big deal because I got to eat milkshakes and smoothies and ice cream for two weeks solid and she still had to eat mostly regular food. I got punched in the mouth for that and I deserved it to. She and I thought as teenagers every chance we had, I fought with my parents… A lot. My legs may not work right but I still have feet of clay. I am an ordinary person just trying to make it through life. I have challenges that you don’t and probably some coping mechanisms that you never thought of but then again I’m sure the same could be said of anyone. Do not pity me. Help me if I ask for it. Be glad when I succeed. Commiserate with me when I fail and encourage me to try again. That’s all anybody really wants from life isn’t it?

Day 236: Owning My Life

My sister posted a YouTube link on to my Facebook today. After watching it I felt like the world’s biggest wimp and sellout. A disabled veteran of the first Gulf War who had been told that he would never walk again without forearm crutches due to damage sustained from jumping out of airplanes loses 140 pounds in 10 months and proves everybody wrong after 15 years of being overweight and alternating between using a manual wheelchair and crutches through the use of yoga. I watched him fall over and over again but eventually his balance got better and instead of walking with crutches and knee braces, he walked with a single pain and knee braces and then without the braces at all and then without the cane. Most of the video is indoors but the frames after those were shot in a part. The guy is walking, no crutches, canes, no braces in sight. He doesn’t fall, then jogging and then full out running, something he was told he would never do again.

 

Watching that video made me realize that I given up a whole lot just because I believed someone else had the right to limit my life when they thought I would never do something. No more. Today and tomorrow and the day after that I own my life.. The words can’t won’t and never don’t exist anymore, at least not within the context of things I want to accomplish. The video I saw can be found here.

Just because I can’t do it today, doesn’t man I’m not going to be able to do it someday,

Thank you.

Day 235: In the Spirit of Lewis Carroll: Six Random Things before Lunch

shakespeare (Photo credit: José Cambrer)

Just for fun here are a few things most people don’t know about me.

1. I got to choose my middle name at the age of 13.
2. Sunday I want to fly an ultralight airplane.
3. I once dreamed of attending Juilliard School of Music
4. I name a lot of my family’s animals for characters from Shakespeare’s plays.
5. I am not afraid of tattoo needles but I have never had a tooth pulled by the dentist because I’m afraid of the needle they use for the anesthetic.
6. If you count each stitch as a separate scar I probably have well over 100 stars just from the surgeries I’ve had in my lifetime.

Day 234: Average Ordinary Everyday Superhero: a Valentine’s Day Challenge For All

Blood Donation (Photo credit: Rojina)

I became an organ donor a few weeks after my 18^th birthday when I went to the DMV and got my first date ID. Even before that at around the age of 12 I informed my parents that if I were to die unexpectedly while still a minor I wanted them to donate my organs so that some other child might get the chance to live longer even as my life was cut short. I believe that things like organ donation and giving blood are important. There are 6 billion people on the planet give or take and I believe we have a responsibility to each other because no matter our social and cultural differences we all have one thing in common: we are all human. In my childhood and adolescence I spent a lot of time in and out of hospitals for surgeries and other medical procedures. I have looked my own mortality in the face several times in the course of my life and is an awesome and terrifying experience. I have been on the receiving end of transfusions and watched people die from leukemia. I didn’t understand that bone marrow transplants reduced used to treat leukemia at the time my friend had it. If I had I would have gladly been tested to see if a graft from me might have helped him. In this modern world fear is ever the enemy. Fear of sickness, fear of pain, fear of dying. There should not keep us from being the best versions of ourselves that we can be. I have a challenge for anybody here thinks that Valentine’s Day is nothing more than an over commercialized paltry excuse for a holiday. This Valentine’s Day get directions to your local branch of the Red Cross, give blood. It can and does save lives I am proof of that. Go to the DMV, check the organ donor box I guarantee you the fact that you exist now won’t matter to someone. (It is worth noting that you can list organs that you don’t want used if you know that some are damaged.) Giving of oneself is a kind of love and it is a love that you do not need a significant other to experience.

 

I used to think that my life, my presence in this universe was pretty pointless. The day I gave blood even though I threw up all over one of the nurses in the process, I felt like a superhero. As I left the DMV with my newly laminated ID with a little check mark on the back I felt heroic. Just your average, ordinary, everyday superhero and I bet if you look hard enough you’ll find you have one too.