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.

Cracks in the Facade

I had planned something else to write today. I even wrote it. My brain was going one way and I believed I had written my masterpiece. There was no wrong in it. I wound up passing out, sprawled across my bed with Sprite waiting for me to come back around. My brain misfired for about three hours this afternoon and I was online. I had conversations with people that made absolutely no sense. This tested a newer online friend’s ability to tolerate. He was very nice about it, but, I realized this has happened with more and more frequency. I also wrote a mess of gibberish that held no intrinsic value, except for comedy.

This occurrence usually fills me with dread. What have I done without being aware? What was real? What was false? This time, I am certain in my reality. I do not have someone whispering in my ear that I am crazy and forgetful. I just had a malfunction in my software. I am not sure if this is from uncontrolled pain, the Aspergers, or the Brain Damage that sometimes rears it’s head. Normally I have seizures around these times too. If I did, it was while I was already passed out. I also don’t usually remember everything intended, there are usually gaping holes.

This could be progress, I could be adapting to the new state of affairs in my skull. I do not know. The memories, while complete, do contain some oddities. For example, the real conversation with a friend went like this:

Me: http://ihasahotdog.files.wordpress.com/2009/03/funny-dog-pictures-wind-teef.jpg
Him: Ah hah.
Him: Before I click the link …what is that suppose to be?
Me: doggy
Him: Cheek flapping fun.
Me: ya
Me: yudpggy
Him: Is that a combination of a yard and a pig?

This is a small excerpt from the Instant Message, my coherency went down hill. What I thought I was saying was more like this:

Me: http://ihasahotdog.files.wordpress.com/2009/03/funny-dog-pictures-wind-teef.jpg
Him: Ah hah.
Him: Before I click the link …what is that suppose to be?
Me: A loldog, from the Failblog people.
Him: Cheek flapping fun.
Me: Yeah.
Me: Do you have a dog?
Him: Is that a combination of a yard and a pig?

Upon waking I noticed the tail end of that conversation, it was very weird. I had a unique reaction however. Instead of being told I was being an idiot, must be on drugs or being treated like crap, I was asked if I was alright. I was given kindness and courtesy. The internet is relatively new, in the realm of humanity and has so far shown itself to be prone to toxic behavior. There will always be pockets of this sort of problem behavior, anonymous bullying, and yet as the internet grows and becomes a normal part of what is expected in society, the need to be cruel seems to be shifting and changing. It feels drastic.

The complexity of my medical care throws up more and more barriers. My reality isn’t always what I think it is. I live in a world that is of my own perspective, but it must be one where I can interact with others. Each time something like this happens, brain static as I call it, I grow more afraid to function in the world. Of course, I have been told as have you, that anything that could be percieved as not normal is the worst ting in the world.

There are cracks in those lies of social normative behavior. There is no reason that we cannot exist in a world with gay marriage, there is no reason why we cannot accommodate persons of short stature, those with disabilities, and have lives that are free of complaint for those without the needs. There is no reason for us to go hungry. There is no reason to say that the status quo at this time is actually worthy of us. We deserve more.

There are people who get deemed insane because they have a bad day. There are people who are supposedly sane, but, later that quiet neighbor turns out to have been a person capable of great evil. The world isn’t as beautiful as I want it to be. I see the beauty more than the faults most of the time. I cannot over look the cracks in the facade.

They mean two things. One, the perception of normal is changing. This means of course that the extremes we see on TV, where people are called fat if they do not meet a rare body standard, where there is no mix of race without it being blatent and a token gesture, and where the disabled rarely are seen in a good way, are not always accepted by the viewer.

This also means that the advocacy that myself and others perform makes a difference. Every challenge, every pain, has been worth it because of this fact. People are learning, people are growing, and the acceptance of the humanity that exists beyond able bodied white men really is there. The internet helps with this too.

Beyond my fingers, as the keyboard responds to my touch, you cannot see my face unless I desire it. I can be any person online. This is frightening in the realm of sexual exploitation. It is also freeing, I am not trapped by my body. I can go onto a program such as IMVU and I can walk. I can also go onto that program and be a giant cat in a wheelchair. With the lack of visual, there is a greater chance of universal acceptance. Though the default presumption is still that you are a white man until stated otherwise, some of the people I have met become awakened to the very fact racism still exists because they have discovered that the person on the end of the wire is not a white man.

The world is changing, and it is changing for the better. This doesn’t mean Utopia happens tomorrow. This does mean we have to keep trying. This means that we have to advocate harder, these cracks were made by those beating their fists against the walls of oppression. We must continue to pound away, to pick at the injustice. Our lives may not reflect much change, it might be generations from now, but the change is happening. There are cracks in the Facade.

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