Confessions and Denial

I have a confession to make. I have been in denial about the extent of my back injury. This was partly to survive, but mainly out of fear. What does a spinal cord injury mean? To me it was this frightening set of words that meant I would never do anything again. I have already proven to myself that this is not true, and finally I needed to know. What exactly happened when my spine began to fall apart? What happens as the damage is furthered? Why am I not supposed to exercise? Why do I keep having palpitations and trouble breathing but my heart seems fine? The last one is what made me start learning. Four years of denial, have ended. The answers are frightening but, empowering.

I found this nifty tool, a spinal cord map! This was the first step towards opening my mind to the information. The map gives a general break down of what happens when the zones are injured. My Spinal Cord Injury is overlapping two of the zones, and knowing now what I do, I can understand all of the above. T-12 and L-1 are both damaged, broken, and cutting into my spinal cord. My sacral region is also damaged, though to what extend I am not quite sure.

I still have feeling in my legs, most of the time, but I have limited control over them. I can do a bang up zombie impression when I am trying to walk, my arms outstretched for balance, moans escaping me as I fight to hide my pain, jerking and halting as I move slowly forward. Zombies aren’t diseased corpses. They are people trying to walk with damaged spines!

There is another set of broken bones in my back, between my shoulder blades. Eventually, if the spine goes there, I will be paralysed in a different way. Some of this terrifies me. I am supposed to focus on stillness, forgoing excercise because moving allows the gnawing teeth of broken bone to flex, shift, and cut into my spine. It hurts to move anyway, even my hands moving enough to make these words causes pain, a deep rooted ache that feels as if it will¬† never, ever end. It might not. If it doesn’t am I lucky? That depends on what comes with the ending of my pain. Death? Not so lucky. Paralysis? Not lucky. Healing?¬† Extremely unlikely, and that would be better than winning the lottery.

I must adapt. I admit openly that adaptation is not a choice, it is the only option. I can risk my life and my health to excercise or I can try to get used to a stillness that is unnatural. It is natural to move, to dance. Watch a small child play, and they are moving, unless in pain. Pain is a rescrictive thing, it constricts us and binds us in ways that our brains cannot always comprehend. That is why I am asking for more help, I need help with food, I cannot always force myself up to get it. I need help to preserve my tattered spinal cord.

In my imagination my spine is like a worn out dress I used to own, it was bright and colorful but eventually it began to wear thin, holes appeared, until one day when giving a speech I lifted my hands and it fell apart. I was thankfully wearing underwear that day but the people watching my speech saw much more of me than intended. I just grabbed my coat and pulled it on, buttoning it, then finished my speech. I no longer have the confidence to fight my body, to risk wearing my spine through. It can’t be tied back together. I cannot move through my life with a tattered spine, pretending nothing is wrong. I must accept it, and adapt.

This is not an act of strength. It is an act of life. I am not exactly sure why, but, I find no inspiration in others who have ‘over come’ their disabilities or adapted. I think it is because the truth is that you die or adapt. That is the exact thing that makes humans what they are. We adapt. We may suffer, we may struggle, but adaptation is not an act of greatness. The acts of greatness come after, with the knowlege gained and what you do with it.

I have admitted many things in my essays and writings here. Now I am admitting that I am afraid. I am afraid to adapt. It means change. I also know that every time I twist, every time I turn, every time I hear loud snaps from my back, this is something I cannot ignore. I already have an appointment in a few weeks with my doctor and I am going to ask for help. I need to see a nuerologist, I need a reassessment of my body. The wheelchair system I have is hurting me. This must be addressed. There is change afoot, and it is unpleasant.

I am admitting too that my mind is dulled often by pills and pain, together, one at a time, seperately. I am not helpless but my body leaves me vulnerable and now so does my mind. I have dreams, I have hopes, but they feel alien. Who am I to dream? Who am I to hope? These are forbidden emotions, just as to dance was forbidden and is once more. The world feels twisted, pulling at me from all sides.

I live in a world of oppression and today it is too big. I am going to write a story in a few moments, for a story telling contest I want to enter. I am going to chase down my dreams, I am going to live, I am going to adapt. I just am not going to give up. I want to. I want to dance, but, if I do I will be paralysed. There are worse things than paralysis despite what people are taught.

A wheelchair is not the end of the world. I just feel that fear anyway. I am in a wheelchair but I am still afraid of it. I am afraid now that I will pass out while using this one, that I will be hurt. This is not the freedom I felt at first, that first taste of being able to go. Now, it is a fear that does not belong. I am afraid too, that when my spine gives I will suffocate. As my spine degrades it effects my ability to breathe. I feel now that I will surely die if I cannot sing. This is silly, of course I can live without music yet I fear it. I once had this fear about my dancing, and although I can dance in my head, I can feel my muscles flexing and moving, I fear that this will not translate through, with music.

These are my confessions. I have been guilty of denial, self harm, and giving in to irrational fear. Apparently I am not super cripple today, just a human. I confess to being just like everyone else who faces adversity and disability, human. I confess that needing to adapt is frightening. I confess too, that I am determined to find a way to get what I want while respecting the needs of my spine.

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!

Dancing with Limited Mobility

I miss dancing. It was one of my jobs, but just as writing is like breathing, it was also a part of my life that I thought I would have forever. I started dancing when I was three, my Aunt’s daughter taught Ballet and we had lessons. I remember my pride at being able to lift my leg high, and the motions, the grace. I felt like a fairy princess during every class. I never wanted it to end. It did.

My father decided that dancing was just too good for his children, so the lessons ended. The ideals and memories did not fade. I discovered Belly Dancing when I was 17, and I once again found myself moving to music. I could feel it in my blood, coursing through my veins and just as singing, it took over my soul. I could leap, I could twist, I could use my hands and my entire body to entrance someone, as I celebrated the life that is in music.

I was the healthiest I had ever been, and I finally had a job as a dancer. I was reading through the contract to sign on as a permanent dancer with a troupe when I broke my back. I knew something was wrong immediately during practice when I first lifted my arms over head and wanted to scream. I still danced, but, quickly gave up on it. I couldn’t make my body move the way it used to. I had lost the silken rhythms and was trapped in a world of pain. It was the first blow of depression. For a time I wanted to die. If I could not move, what was the point of living?

Four years, maybe more as my time line sense is skewed, and I find the music still stirring my body. Every time, if I twitch my hips slightly my spine begins to burn and I cry. I am failing to resist the lure of a simple beat. I can hear it in my head, my heart pounds and I want it. I cannot strike the poses from my modeling career, I cannot dance… or can I?

Thanks to William Shakespurr I discovered a new method for dancing. He has mastered the remote control just as Sprite has and was watching fashion shows. He has a love of the bright colors and I think it is the techno that is the latest in fashion runway modeling that draws him. I could not resist the music. Tonight after a satisfying, if exhausting Career Builders Toastmasters Meeting I flopped into bed and got comfortable. I left the TV going and reminisced.

I remembered walking on the catwalk, Striking a pose, my body in line, my face the face that the people watching wanted. My body the perfect display for clothing, to make you want to buy it. I struck a pose, laying flat. I crunched horribly but despite the protests of my frame, I felt free. It wasn’t nostalgia, my mind was not trapped in the past, it was just the giggling and playful side that I do not let out as often.

A commercial came on with music and I moved my arms, my back is supported when laying and so it doesn’t have me tipping out of my chair. I was dancing again. This is how I dance now, a fresh discovery. I can twist, I can move, without really moving. I can feel the rhythm and I am not trapped now. My limbs feel freed. I know there will be conecquenecs in the morning, there are already now with my hands refusing to respond as fluidly as normal. I am forbidden to move like this by my doctors, yet, I need it for my soul.

I will have no regrets tomarrow. I have none now, and I am free. I am dancing in the air, I am floating in the sea. Nothing can stop me, for the melody frees me. Twisting, twirling, weightless, and so alive. I burn, not with pain but with Passions that have long been starved. Model, Singer, Dancer, Teacher, Writer. Who I have been? Who I am.

  • Polls

  • Ye Olde Archives of Fury

  • Top Rated

  • Top Clicks

    • None