Saturday Silence

I locked the cats out of my room. It was a moment of great opportunity. One was in the litter box, the other was chasing a lazer beam up the wall. The door was shut and with that I curled up, letting myself drift out on waves of exhausted sleep. I crashed early. Due to years of insomnia six hours is good, but, the peace of living in safety, with someone I love, and knowing I can shower whenever I want? I haven’t had any trouble getting to sleep here by four AM. It still bothers me when I have to be up at eight and I am staring down the clock but I can function for three days on four hours. It is nice to not have to.

I dreamed some really interesting stuff last night. I had a giant pink robot a bit like Voltron but, this one had Catnip Canons and Anti Allergy Grenades. In my dream I could destroy everything I was allergic to. I did, and became the greatest super villain ever! I kept giggling in my dream because it was just too fun to blow up cucumbers, though, eventually everyone else was just as hungry and bored with my diet as I am. That is how bored with my food I got. I dreamed of destroying your food, so you could share my boredom. In the end I re-engineered foods that we could all eat, though most of them tasted like tea and pomegranates. The Pomegranate is the one food I have no issues with.

I could live on pomegranates alone, if they were a year round fruit and not so expensive. Their rich flavour, followed by an improvement in pain level, a need to not take pain meds for two days if I eat a half, a week if I eat the entire thing, and the grand finale? No allergic reactions what so ever. This is the fruit of my dreams in my reality. I want to visit them in their native territory someday, gently petting the tree trunks, talking to my future dinners. Celebrating them in their nascent state.

It is quiet this morning. My neighbor is not vacuuming, though that is actually cause for alarm due to her constant need for clean. There are no screaming children. There are no car alarms. I did not wake up with random Batsignals on my forehead, and locking the two cats out only made them super snuggly. I like quiet. Apartments are rarely quiet. Upstairs neighbors walking, the floor/roof creaking as they do. It always sounds like they will fall through squashing me into oblivion.

I didn’t hear the whirl of technology either, just this pleasing idle. Despite the upheaval of yesterday, there is peace to be found. I also do not have to deal with any doctors or idiots today. Tomorrow I visit my mother, and although that will be exhausting, it is a day of peace. We’re eating at her house, I am picking up some gear for a speech, and I get to see my beautiful siblings. I ask permission before posting people’s faces on the net, but if I can get it I wish to show you my gorgeous sister and my super tall military minded brother.

B, my sister, is tall and graceful. She has the body for modeling, and not the plus size modeling that I did. She is the epitome of desire set by the media at this time. She is not trying and often is embarrassed and teased because she looks like a barbie doll or a porcelain doll, depending on her outfit. She has long platinum blonde hair, big hazel eyes, and will do greater things than modeling for her career. She chooses her brain over her body. “Kat, I am pretty now but what if I fall off Dixie,” Her horse,”and wind up in a wheelchair like you? They don’t want wheelchair models.”

She desires security over fame and fortune. I wish I could tell her that it could never happen to her but our mother almost broke her back falling off of a horse, and B knows all about Christopher Reeve. My grandmother screams it at her every time she finds out B has a horse. She might actually be forgetting, but with her it is hard to tell if it is just a desire to scream at B.

A is my dreamer. I am a bit possessive. They are my A and B, and I do not share well. He is nearly seven feet tall, and has recently begun to pursue his dreams by joining the ROTC. He looks good in uniform, but, for some reason when he wears the uniform he actually looks his age. He just turned 16 and has his license. Be afraid. He is prone to day dreaming and with undiagnosed medical issues, there are consequences. His father forbade diagnosis when he was younger, trapping him with a future that is bleaker than he realizes.

In my Saturday Silence, as the world drifts on, sleeping late today, I have a clear view of the future, of the past, and of the moment. I meditate on things, and I know that yesterday merely gave me something else to fix. I am no longer angry about losing out on my dancing, teaching, and other physical careers. I have something more powerful than what I would have had if I continued on the path of physicality.

Dancing makes a difference for some, I could someday dance in a movie or a music video, I could have a great career. Advocacy gives me time to breathe. Even when the pressure is on and there is fear fueling my fight more than strength, when I advocate I know exactly how much power I have. All of it. I do not feel weak when I advocate, no matter how tired I get. I have a sense of purpose that is hard to match with other goals I have had. When I advocate it is with the knowledge that I am changing the world. One tip of my hip, a slight twist of my leg, a rolling display of muscles and the freedom to shake and move, that held personal power. It felt beautiful. I felt deliciously free.

One phone call to the Governor. One conversation with a reporter. One word of support offered. One person made aware. A life of passion. This too holds power but it is the power of change, the power of equality. After sleep, after finding that I am not as alone as I felt, I am empowered in my moment of silence. I play out the moments when I nearly failed out of fear, the errors others made and that I made in this fight. These are armor.

If I recollect and prepare the times when I have been threatened, I am prepared. It is oil on my armor. When I remember what words worked, that is sharpening my sword. Saturdays of silence are not silent. They are just times to reflect and prepare for the next battle in this war. I hear the birds singing, and I know that the fight will be long and hard. I also know I will win. I may cry, I may bleed, I may wish to flea, but in these moments of solitude with my peace held in my heart I know too that nothing can stop me. I am changing the world with every word, every breath, and it is too late to go back now. The world is already different because of actions that I have taken, that you have taken, and the actions of the future will just give us more strength.

Sharpen your swords, care for your armor, feed your companions. Feast and Celebrate. Enjoy the moments of peace and silence. We are at war. We are an army, an international one at that, and nothing can stop us for we have nothing to lose and only the world to gain. Lets rule the world!

Beyond the Search Words

I normally name my posts before I type them out, it helps me to retain focus. Instead, I am unable to hammer out a decent title, or one free of curse words anyway. I decided, in my insomnia fit, to peruse the offerings of the internet with a few search words. Disabled and handicapped being the top two. I wanted to see what came up. I am not linking any of the blogs I found, because beyond what is already in my blogroll or private reading list (waiting for me to put it in the blogroll) disgusts me.

Ignoring the posts about disabled porn, ignoring the jokes at the expense of handicapped people I came across what appeared to be a journal of a trip by a handicapped woman. A cold and a broken leg are difficult but not disabilities, are they? The cold isn’t a disability but reasonably the leg could be a temporary disability. Not only does it effect your daily function but even after the bone heals there can be lingering damage. I still had a visceral reaction to the writing, and not in a good way.

I understand disability, and the challenges inherent in trying to maneuver in spaces that are cramped, dealing with prejudice, but writing an entire blog about how you broke your leg and that instantly makes you the most disabled person in the world is really not something I can get behind. Yes, I admit that the writer’s pain is important. However, so is their dignity.

It took me a long time to find out how to blog, because of that very thing. I did not understand the point of blogging, I did not understand that it could be done with Dignity. It was the need for dignity that lead me to posting that very first time, and each time it is the basis for my editing, rejection of some of the writing and my attempts to be open minded.

I strive for personal dignity and I work hard to not strip away the dignity of others. Reading about how cruel the world is for those with an obviously broken leg, the desire for pity instead of dignity frustrated me. So I moved on, another person was complaining about handicapped parking, and how rude it is for people who are handicapped to use it. I read about this one a lot, it sneaks up in most blogs at some point. The concept that a safe spot, with enough room to move a ramp out, your chair, and easier access to a building is beyond some people.

Moving on again, I had to do some deep breathing, refusing to let myself post cutting words to try and make them see. Attacking people, no matter how much I disagree with them is not something I want to do. That would lack grace on my part and could remove their dignity. Then, I found another post laying out another problem people seem to have with handicapped parking.

Did you know that “all handicapped drivers park crookedly, blocking me out of my car when I park near those damned cripples”? Not only is this a blanket statement making it a stereotype but, I often have to have our van pulled out, because there is rarely handicapped parking, and the cars by able bodied people are often parked just as poorly. I am not a driver, so I am not aware of how hard it is to parallel park, but with the monster chair that does not turn I cannot do it in a conference room. I perceive this act as massively difficult.

I am often tempted by magnetic signs that say “Please do not block access to this door, a ramp is contained inside and access is needed for my wheelchair”. I do not because of the local culture. It might qualify as a subculture, and yet it is dominant in my daily life. The culture towards the disabled springs from a lot of superstition and the very poor education available.

I know that the education offered to the American Children fails more and more annually, yet if you are slightly different or have any challenges you are shoved into a room and no one wants to see you. No one teaches you. I am primarily self educated, except for the teachers who actually cared enough to break into my world.

Being aware of this, and what was taught about disability in school, I know that they fear me. the ubiquitous they, in this case means the average New Mexican. The little that was taught about disability in my schooling included first, that disabled people could never function in society unless they were Franklin Delano Roosevelt, though we were taught he contracted Polio after his presidency. This is a fallacy, as I know now. Then, we were taught too, that no disabled person ever did anything of historical value. Disabled people are just evil. The contradiction in FDR’s existence never seemed to make a difference.

The superstitions continue, one of the local superstitions states that if a pregnant woman sees a horror or a disabled person, her child will be disfigured in the womb. This means if you are pregnant and stare too long at a person in a chair or even a person with a broken leg, you kill your baby. A lot of the pregnant women out here are teenagers, and a lot of the pregnant women teens and adults drink and smoke. yet the blame falls to the disabled.

The more I read tonight the more frustrated I grow. I did stop, but only to protect myself from festering rage. A cold is not a disability. Illness does not mean disability. A broken leg is a physical injury but injury does not always mean disability. Depending on the rate you heal, you might need a placard, temporarily, but that does not mean you quantifiable understand what it is to be truly disabled. Your pain is valid, do not use it to invalidate mine.

Changes and Medicaid

I should be asleep, I was up at Six AM unable to sleep, my mind entrenched in researching what it will take to get Medicaid to cover a new wheelchair. I just got my scooter but my needs have already changed. This might actually be enough, despite being told by my Wheelchair Provider, “Suck it up, you have to wait five years before they will even consider another chair.” I left feeling anger at the young man, first he failed to repair my chair, then the manufacturer also failed and they gave it back to me running but barely manageable. It doesn’t turn.

How can I function with a chair that won’t go around a corner without a circus routine being thrown in to the mix? I gave up on driving indoors with the one I have a while ago. It is too bulky to fit inside. I didn’t know they should have let me drive it before I was left with the chair, or that I should have known with in a month, by some strange magical process that the chair was wrong for me.

I had an accident, before I started this blog, as well. I sat in a chair, in my own home and due to age and exposure to extreme weight for twenty or more years, it collapsed. It felt like I sat on air, even as the wood cracked like a shot gun. For me, when something frightening happens the world slows down to a snail’s pace. I could see the terror in my friend’s faces, and was glad instantly that the abusive roommate wasn’t out of her room yet.

I felt too, the pain as my body tipped into a position that it no longer could sustain. I knew I was going down. I felt this same slowness when my back broke initially, it took forever. I was actually bored by the time the car finished it’s impact and by the time the chair hit the floor, wanting the pain to come, so that it could be over.

The result of my strange slowdown is two fold. The problem is the anticipation of pain might be either smaller or larger than the actual pain. Anticipating it I may tense up, making the imapct worse. On the flip side I can also work through strategies on how to land, shift position, and protect myself. I also can go through panic by the time I hit the floor. I just hate feeling like I am in a Zack Snyder Film. My least favorite director, his trademark is Super Slow Motion Story Time.

I was lucky, I did not hit my head on the chair. I should have but when I just let myself go, my body relaxing until impact, this changed how I flowed through the air. I was impaled on a wooden stake, and immediately made a Buffy Joke, unaware that the joke was too close to reality. I barely bled. My instinct too is to slow my heart rate, to stop all unnecessary functions. this is fine enough but, also is dangerous. I am not sure where I learned it either, but it might be my Mother. She does it too.

My service cat kicked into action, running first to try and fetch any human left in the house, then, checking to see if I was still breathing, before she called for help via telephone. My Person and my PCA (Personal Care Attendant) were both called. Then I went via ambulance with the nicest and most well informed paramedics. I do not know what these emergency personnel are called in other countries but they are our first responders, along side Firemen, and the police.

They were worried, and told me so, because I was far too calm. I reminded them that panic doesn’t do anything for you and hinders care, and that my friends had panicked enough. I had spent half an hour on the floor, trying to not move. I started shaking violently, having small seizures as my body protested. Finally, my seizing was documented. It is related to my level of pain. They gave me some morphine at the hospital, just before sending me home.

First they did Xrays, nothing appeared to be wrong. It’s been a month, maybe two. I am never really sure how much time passes, a side effect of my childhood mental health care and severe traumas. I am not sure which one caused this, PTSD or too many pills. The Xray tech was a student. He was cute too, though I barely registered that. He and his supervisor had a patient who could not move into their positions for the most part, my body refused and it was unsafe until after xrays due to the existing injury.

I found something new, they accommodated my body and still got the needed film. This is rare. Usually they twist you, ignoring your screams, telling you it will just be a second. Xray time is a form of abject torture. Why? Well, there is not usually much they can do to accommodate, or they forgot how. I had a smart tech and a brilliant student. I told him too, he should stick with it and that if he wanted I would write a personal recommendation. I gave him my email address and telephone number.

I have a trained reflex to try and fix people, and this evolved into making bad jokes and never crying in the ER. I cried that night, and there was blood. I still made bad jokes but, I finally had an ER doctor that knew it was the pain talking. I had to make jokes in order to seem okay. I couldn’t stop. That was when I started trying to make myself accept that I need a therapist. Self defeat is not an option when your body is already falling apart.

You know those toys with strings in them, that when you squish them they collapse? I feel like I am one of those and someone keeps hitting that button. I often look like that when I fall too. The analogy is too close for my Person. He doesn’t mind my jokes usually but sometimes when they are cruel and anti my existence he has to remind me to be gentle with myself.

The hospital I chose was full. It rarely is, and that meant anywhere else I would’ve been worse off. I live right next door too, the Women’s Hospital. A hospital dedicated soley to the health of women! They were the first place to accommodate a need, long ago. They woke me up to being treated like a human by doctors.

As we left my doctor shared a funny story, perhaps to illustrate how unfunny any trauma was, but, it was amusing in it’s tragedy. Here it is paraphrased, beyond this point, if you are squeamish, I would skip the blue text.

You like jokes? Well, I have a sort of funny story for you. Lately we’ve been seeing a new type of meth.” So far not funny.”People are mixing laundry detergent and amonia and injecting this into their bodies. Supposedly the best high yet. We have seen a few who miss the vein.” I am busy imagining what the ammonia is doing to their brains, when my Person shudders and the doctor continues, “Each one had gangrene before coming in. I know this isn’t the funny part. Seeing their flesh cook from the inside out, but, they usually start seeing things. That’s where it gets funny. Blue bunnies, almost all of them see blue bunnies.

I took this attempt at illustrating just how funny it wasn’t to heart. When I was in the ER for my Anaphalactic Shock I did not tell a single joke. Not being able to breathe helped, but, that story echoed in my head. Most of them left before they were fully treated. It too raised the awareness of the scents behind this new Meth. I did not list all of the ingredients here either, but he did. Now, I know, if I smell really clean laundry and it smells like ammonia too, watch out!

Life is full of change. NoneĀ  of it is easy, but, I follow some practices of Dharma with in Buddhism, this doesn’t make me a complete Buddhist, there are more components to my religion. It has helped me however, find some acceptance in being born into this body, in my family, and in the things I believe. Some protest Buddhims as a load of bull because there are aspects that could lead to self blame. I see it merely as another tool for coping with change. Buddhism is a life style, not, a religion.

I go back to the grindstone, trying to find resources to take to my doctor to explain my new needs. Likely I will see another wheelchair doctor, walk my few shaky steps, explain why they are fewer. I get tired of the explanations. Do they ever stop?

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