Karma (Trigger Warning)

Do unto others as they shall do unto you. What goes around comes around. Karma in the western world has been described to be swift and almost instant. Traditionally as you trace it’s origin back Karma becomes something for the next life. If you work hard and are good in this life, in your next life you will have happiness, freedom from pain, and joy. You may end up as an animal. a bug, or a human. Humanity supposedly is the top of the spiritual totem pole before you reach ascension.

This is a super watered down explanation of Karma but without researching Karma itself and the religions that teach it, this is likely all you will learn. I have heard my entire life how evil I must be. In Christianity it was whispers about my mother, that she did something to deserve a heinous child like me. When I started practicing Buddhism and learning about every religion I could in my quest to find what I could believe in? I was told over and over I did something in my past life and this is part of my Karmic reward.

Horrible pain, repeat abuse, being treated as a subhuman. Yep. This is all self inflicted. I chose through actions that have been described to me as ranging from being a thief through murdering babies. The extremeness of the crime varying depending on whomever was trying to translate my Karma for me’s perspective on disability. Not once was I told anything good about me now. Based on past transgressions I am convicted without evidence, merely the hearsay of my spine and brain.

In this moment I am questioning my faith. I cannot stop it. I am angry with those who teach religion. Jaded16 posted a commentary on Womanist Musings about Shakti, which is power. She questions her religion. I have written countless times about how many times my asking questions to understand has caused others to reject me and now I am rejecting Karma. I do not believe that Karma is being taught properly.

For as long as I can remember I have loved before anything else. I have been swift to open my heart and even through the built up pain and the slow burning hatred of family that has developed, the distrust of others, I still love before all else. I tried to stop this once, and it nearly killed me. I don’t want bad things to happen to people. I work so hard to hide this part of me that I have a front of violence to protect my heart.

If I was born with this capacity to love, then how could I be some monster in a past life? Why would I be punished now when I love? This is not logical for me. I think of all the love I have tried to give or even just kindness, respect, or acknowledgment of humanity and all I have received from the majority is a statement that I am evil, a demon, or deserving of punishment.

Karma is disability hatred. Karma is being used as an excuse to debase people based on some small flaw, the flaw in the eye of the beholder. Karma is used to reject the fact that I am a person and it is used to excuse those that harm me.

Karma, I believe in some of the concepts but not that I am cursed by a past life. I cannot believe so and love myself. I am tired of feeling as if by feeling love I am going to be attacked. I can name many people I love, yet I cannot admit it out loud. I am so terrified that by loving someone or something it will either hurt me or be taken away that I can barely commit to a new cat in my life. The only reason I could do this was for Sprite’s well being. Even then I had a clause set out in case the commitment was too much. Incase I failed to love.

In my life I have had my defenses taken from me. I have been told many times to not fight back against oppressors lest they oppress me further. I have been told it is wrong to steal food when I am starving because I may go hungry in my future. There is no future if I am beaten to death or die from starvation. I have been told I am not a person because my body marks me as Other.

All of this under the word Karma. It is the same as when my father raped me in the name of the Christian God. God wanted him to wound me physically so that I now am worried about dating because I will have to explain the scars on the inside of my body if I allow another penis or fingers inside of me. If I make love to someone first I must expose my most vulnerable self to them in a way that I can barely write out. I must find those words and risk rejection because of our victim blaming rape culture.

When I am told that Karma will take care of those who wound me, I am being told that I shouldn’t bother trying to escape my “fate”. I am being told that I shouldn’t speak up. I am being told that I shouldn’t argue for my energy or health. I am being told that I am guilty if I do what is right for me.

I have realized more internalized abuse. I am too flexible with people, allowing them to stay in my life because they may suffer if I push back. Lately this has shown up clearest with caregivers. Each one has had an excuse for why it’s okay for me to be left in a state where it is clear they are not doing their job. “If you speak out my child will suffer.” “I will lose my job and have to quit school.” “It’s just this once, don’t say anything it was a mistake.” “If you report me, it’s bad Karma.”

Caregiverrs have said each of these things to me. Each one has goaded me because they are a human. I am expected to hunger, to feel pain, to lose things, to have my life be a shambles for their convenience. I am expected to pity my mother for choosing to eschew her education and her choice to embrace the very abuses that her own religion preaches instead of thinking. I am expected to pity someone for being less intelligent than I am.

I am tired of having to waste my energy on someone else’s conception of Karma. I no longer accept this entity called Karma. I will have another name for my beliefs. I wlll not accept the idea that your choices impacting you is my fault. I will not settle for second best. I am aware that I am intelligent and I will seek intelligence. If my body is in pain due to Karma, I did not deserve the abuses that put me into this state. It is the Karma waiting for others that they will face. It is my choice in how I deal with it but my disabilities are a marker of my survival. They are the war wounds of a soldier in a vicious battle that is pushed aside often for the comfort of others.

I am declaring war on this misinterpretation of Karma. No longer will I be told that this is my doing, that I chose to be beaten, starved, and broken. I will instead push those people away. I have people in my life like M that do not think I am a product of Karma, that love me. It is time for me to cut off people who aren’t worth my time.

I want to have more energy to talk with my friends, many of whom I have met through this blog. I want to have more energy to support them in their endeavors, and to succeed in my own. I want to have time to explore the world, and I want to have adventures again. I don’t give a (censored) about your feelings anymore abusers. I have to love me too. Loving me means leaving you to face your own version of Karma as cause and effect bite you in your butt. I will no longer deny that I like softer feelings of love, sometimes like pink, and truly relish my label of cat lady. I chose that label. I have desired it since I was a child.

I will embrace my creativity, even if it means someone is uncomfortable with what I choose to do. I will paint my walls red if I want to. I will sing. I will dance. I will not accommodate anyone else, because the people that matter don’t need accommodation that costs me anything and therefore I will meet their needs without even trying. I will not try and stretch myself to oblivion tolerating you. You can stay away unless you actually know how to learn. Only people who want knowledge are welcome in my life.

The Chronic Life Style

When you live with one or two or even more chronic illnesses your life changes. You lose something. Life becomes medicalized. You are removed from society, even if society doesn’t see it. Some conditions are blatantly obvious, but others may be hidden by clothing, misinformation, or even great efforts by the patient. You become a patient. Likely you also lose patience with the practice of medicine. Depending on the rarity of your disease or diseases you rapidly eschew laymen’s terms, having to research so that you can teach your doctor about the latest treatments.

It may feel like you should give up on doctors, but you may need medicine in order to have any sort of quality of life. Painful procedures including biopsies may become a regular requirement for treatment. You will have a team of doctors, none of whom communicate with one another. The coordination of this team depends on you. Most doctors will try treatments that do not corelate, and many will eventually give up on you. They want to treat you with a cookie cutter treatment, though for most rare conditions these do not exist because the pharmacutical company cannot make enough money and doesn’t really care if you are in pain.

You spend most of your life in a waiting room, and once you have a doctor in a room with you there is often a fight to get them to listen to you. Eventually, you learn how to make them listen, though this comes with practice. You are known by your first name by a pharmacist if they care. You learn to count your painmeds at the counter if they don’t. Sometimes they pretend to care just to steal your medicine.

Your doctors all want you to take dozens of pills, and often put you at risk for an overdose if you do not know why you are taking other things or their side effects. This burden can be very heavy if the pain is effecting your cognitive function. Some doctors will ignore what you want, they will ignore your chart and may prescribe drugs that you are allergic to. They then get offended when you point out that the medication will harm you. You don’t matter to these doctors and they are often specialists. You learn soon too, that you want a doctor freshly out of med school, because they are open minded and are often the ones who remember the names of rare diseases, but you want the experience of a doctor who has been at this for years.

There is no option for both, you can either have inexperience and passion or the doctor who has been dulled by years in the system. If you go to a hospital with even one medical student you will be shown off like a side show freak, because you are rare and fascinating. They will prod you, even if your condition has nothing to do with your visit. If you have an ear ache, they will still want you to flex your joints or to poke your skin to see it’s odd reactions. They all want to interview you or treat you so that they can write a paper on your condition. None of them keep in mind the humiliation that some of their questions can cause. Some doctors do not ask permission before telling these students about you, violating your HIPPA rights.

At other hospitals the internists may be in the same position as medical students, though they are much rarer. Often the internists will arrive and will ask permission. The curiosity still gleams in their eyes but they are not going to ask the questions with as much bluntness, a sign of mental maturation. Still, even if you are a small child, you forget to have a childhood. Doctor’s don’t really seem to understand that you lose your personal life.

The condition may have treatments, but many of them might be surgical. You could have a few conditions that cancel out the treatment options of others. The horrible sensation of turning into a grotesque monster may hit you. At this point, or even before, many with Chronic conditions turn to thoughts of suicide. Some even commit suicide, abandoning their families and lives. Some choose this route because they were abandoned instead. All Chronic Illnesses come with a side risk of severe and Chronic depression.

You might start laughing at every new diagnosis. You might hear the words “rare” or “genetic” and burst into giggles. They aren’t sounds of joy but it is really a mask for your horror. Each diagnosis has the same grief process. Sometimes you may be able to skip denial but you can never skip over the tears that you cry when you are alone. Even when you have a support system, they can’t always help you to feel better.

As your condition progresses you forget to do things such as buying groceries, or you have to choose between the medication that is vital to you and your pain medication. Many people with chronic conditions are looked down on if they need a handicapped space to make it through their shopping. Some careen through the store in a rush trying to get everything done before the pain overwhelms them, or the fatigue. Others use a motor cart provided by the store, praying that some little old lady doesn’t see them. They might feel guilt the first few times, but the ability to buy groceries with diminished pain is such a huge relief that they continue to use the carts.

At this point some continue to work, though others may lose their jobs. Not only are most people with Chronic conditions, even those which are supposedly pain free, fighting depression but the treatments may cost them their ability to work. If, as with Hidradenitis Supprativa, there is no treatment beyond surgery the patient will likely wait until the condition has debilitated them completely depriving them of their livelihoods. Some of these conditions are listed in the government’s database of conditions which need expeditious approval for a Disability claim.

Due to the listing in the Disability Database, the patient may run across a person who desires their disease or at least the diagnosis. This can be in the waiting room of the doctor, in line at the Social Security Administration Office, and even online, when seeking information and hope. This can often prevent a patient from seeing this doctor again. The patient might notify their doctor or the receptionist about the conversation. Instead they likely are too ashamed by what they have heard. Usually the person who has stated they desire this horrible condition believes it is truly painless, and considers it the easy way out. They are unaware of the detrimnetal effect that their words might have.

The patient with disability still faces the cyclic visitations to a doctor that the patient who has retained work or has made the choice to try and deny the need for Disability Benefits does. No chronic patient is exempt, though there may be enough relief from their condition to give them the sense of remission. Sadly due to the Chronic nature of any Chronic condition, there is no truth to this and they face the risk of a deepening depression or the onset of depression depending on their personality.

It is recommended by most physicians that patients seek therapy, although the psychiatric community eschews supporting most pain patients, preferring to tell them that their condition is in their head. The patient likely has spent years fighting for a diagnosis and will often have trouble with the notion of seeing a therapist again due to the traumatic treatment recieved before. This is not universal, though it is more common than a happy history with a therapist. This does not mean that therapy is not a good choice, as the state of mind can effect the reception of treatment by a medical physician.

Many patients will seek a support group before seeking out a therapist. With the advent of the Internet there has been an upsurge in email groups. Some patients may struggle with finding a group where they “mesh”. This struggle can be due to race, religion, or even prejudice faced against certain conditions. The rampant discrimination with in the chronic illness community can at times push people back into the mental distress mentioned previously. Many support groups try to modify the twelve step system or insist on a certain religious belief. Some members of support groups may be religious centric, focusing on prayer. Not every chronic patient wants to pray constantly. Many have had crisis of religion and are also seeking out their beliefs. This means that the religious patients who have turned to god may agitate their mental stress further.

This does not mean that any of these groups should disband, it merely means that a further support structure must be created and maintained by the patient. The patient has at this point forgotten that they can be more than a last name in a waiting room, or a first name if their last name is moderately difficult to pronounce. The patient may have had multiple personal crisis, and many years may have passed. Each patient progresses through various points in this article, and perhaps all of them. Some may be exceedingly lucky and find the perfect doctor, therapist, and have the perfect family who supports them unconditionally. These patients are rare. They also live with Unicorns.

Depending on the condition and the level of gore that the patient faces romantic interludes might be impinged. It may become difficult to hold their children, or to touch their pets. Fear may also be an issue with the patient’s spouse. Sadly, many chronic pain patients face marital crisis though a significant number of these crisis actually strengthen the relationships. Chronic Illness does not preclude the patient from desiring romance, love, or affection despite the potential for an increased level of anger as a side effect for the pain. The patient might begin to display outbursts of rage, instead of depression. They may also seem to mirror the bipolar patient (if this is not their chronic condition) with Mood Swings.

Some of these emotional reactions are the natural response to the brain altering it’s function to try and work around chronic pain. Others may be a response or side effect to treatment. Some medications excaserbate depression, others may mask the symptoms but only for short periods of time. The end of the masking period will be followed by a worsening of the condition.

With patients who have only surgery as an option there is the risk of being scammed by snake oil salesmen, untrained herbalists, and finks. A patient must research every medication, doctor, and treatment. It has become the patient who knows more than the doctor.

In order to return to being a person instead of the patient, a patient may tell their doctor to sod off. This is otherwise known as firing the incompetent buffoon. This is not always effective, as the medicalization of their humanity may have progressed rapidly and with great depth. The patient has found that resistance is futile. It appears that the Chronic Life Style is much like that of the Borg, as the patient has lost personal identity with in their medical file, beyond DNA evidence. The patient has discovered the medical hive mind, and thus their own knowledge has given them the ability to connect to it.

Published By Dr. Sarc A. Sim in the American Muddicle Association Joynal.

Author’s Note:

This was my attempt to try and vent. I spent last night trying to find out if I needed surgery for a very painful abscess that stayed hidden in my flesh for a good while. The cavernous hole was larger than a baseball, and showed up only as a small spot. The current treatment prescribed was oral antibiotics, which I stopped this morning. They made my stomach hurt and effected my reactions to the sun too much to continue.

The incompetent dermatologist I wrote about before prescribed this and a topical antibiotic that I used last night. I am now being forced to choose between improvement in the skin itself with the sensation of being burned alive or a faster progression of this illness that has no real treatment besides surgery and skin grafts. I haven’t decided yet. I am not sure I can handle that much pain.

I also am trying to get over the feeling of being alone. I wrote before about my rejection of mainstream religion, and all of the HS groups I could find last night seemed to talk about how prayer is the only treatment. This left me feeling as if I should just go to sleep and never wake up. This is a step away from suicidal thoughts for me, but is very close. The urge to give up is universal, with any challenge.

The final nail in my emotional coffin was seeing pictures of the treatment for HS. My skin is unable to hold a stitch, which means that where someone else could have the skin literally cut out completely and grafted over I could not. I did determine, as my doctor never knows and I have yet to find a Dermatologist willing to treat me more than once that I likely do not need surgery as long as I drain the abscess hourly. I am doing this and the wound is already shrunk down to the size of a golf ball.

I know I have support here, and someone else who is reading this probably found out they aren’t alone. I am considering doing something that feels drastic. I am considering building a website to host an email support group, a forum to discuss medical things, and a place to discuss non medical things. This would be a place to congregate. There would be a selection for those with the need to talk about their religious choices, but it would be seperate from the main support group as those persons are more likely to find a support group that fits them. I hope that it is clear that I am not judging anyone based on their religious choices with this, yet I want to make a place where you do not have to be religious, of the same religion, or can be an athiest without being judged.

I dislike reading about how once someone started praying, eating parsley, and did penance they realized they are marked as a sinner and that is the end cause. Yes, this is an extreme form of self belief, yet with the more untreatable conditions, of which I have many, that this form of extremism is more prevalent. I believe that some persons who happen to believe in the more widely accepted religions just as the less widely accepted religions may go to extremes but the main groups do not.

I feel that this all needed explanation as some people may be offended by my words, and that is the last thing I want. However, I needed to vent my emotions in order to subvert the depression that is trying to take over my mind.

If you would be willing to help create a system as described, please either use the contact form and drop me a line or post in the comments section. I cannot do it alone, and I do not have enough time to make this a reality at this time. This of course is logical as any group needs more than one person. I am looking at the Yahoo Groups System, as well as some of the free services for a website.

Diagnosis! Gotta Catch’em all!

I am in an emotional upheaval. I found out today that Block Insurance does not have any non Walmart Eye doctors. All of the numbers they gave me were between disconnected or offices without actual vision care professionals. I also was told to choose between Walmart and Eye Masters which is the Walmart of eye care. Would you go to Walmart for diagnosis and treatment of anything medical? I won’t. I want options. I want to see a doctor I trust, not Mr. Walmart Doctor.

I spent several hours on hold, trying to get an appointment. My right eye has an existing hole in the retinae, but no one wants to treat it. Now that hole has some little friends. I can see them, the spots grow and most of my vision is gone in that eye. I can barely see my monitor, and am defendant on the Windows built in Magnifier to see. I no longer read paper, I can’t see it. I no longer watch TV. I listen to it. I did reach the point of yelling on the phone.

The conversations were comically inept. “Thank you for Calling Block Vision, what can I do for you today?” “Yes, I am calling to try and find a provider. I …” Interrupting me, “Did you use the automated system?” “Yes, and the numbers were either invalid or the offices wanted to charge me despite my qualifying for zero copay. I also am not comfortable with Walmart for my eyecare needs. I have some advanced care issues.” I made a mistake. I admitted I need more than they want to offer.

“Spell your name.” I did. “You can’t spell your name like that.” Since it is my name and has been for a long time, I would not know how to spell my legal name. My last name is the issue of course, not the first. I spell it again, and get the same response. I am done. I want to make this person cry, I want to rain fire down upon them. Instead I take a deep breath. “Could you please transfer me to someone else?” I did not ask for a supervisor yet. “If you cannot calm down I am goin to hang up on you.” “I am calm, I just asked for you to transfer me to someone else, I do not think we are communicating well.”

She hung up. I kept getting the same person too, and after six calls I let go. I was already in tears so I screamed. I cussed. I told her exactly how good she was at her job, and since they claim to record these conversations, I hoped her bosses listened in and fired her. Not my best move, but, being treated like crap gets to me. The last thing I want is to be blind, unable to move, and unable to hear. I am being told that all that I and anyone else who is on Medicaid (mostly children) deserve is WALMART?!

Walmart screws up everything. I want a real doctor. Not some brainless person who barely managed to graduate. I want someone I can put my faith in. Wouldn’t a real doctor be hired somewhere else? I am not saying that every doctor gets the cushy jobs but I want access to the doctor of my choice or at least a variety. I do not want to be told I am insane for desiring trust with my medical professionals. I do not want to be told I have to pay out of pocket because I am low income and have other medical issues. I want medical care.

I want to see. I miss being able to see the faces of my friends clearly. I miss being able to see far enough to give safe directions. I do not drive but, shouldn’t I be able to see the end of the hood? A van doesn’t have a very long hood. I also want to do more than push and push to try and get proper care. I am so tired. I am tired of having to advocate. I have been advocating for people and fighting my entire life. I have always been the caregiver. I want someone else to do it.

This doesn’t work however. I can’t just stop advocating. I can’t because I do not know how. I instead took the time to calm down enough to call the Governor. I left him a voicemail along the lines of this, “Governor Richardson, I am a voter who encourages others to vote, “I always start out with the secret threat that if you do not help me I will not vote for you. “I have been trying to find an eye care provider.I recieve SSI benefits and am on Medicaid via the COOLTS program. You have influence here, the program has farmed out their providership for vision care to Block Vision. Block Vision is only allowing a selection from Walmart and Eyemasters doctors, I cannot get an appointment with them and my vision is degenerating. I need your help to fight for your constituents.” I left my number, and I know I should have been calmer but my voice likely gives away my frustration and the fact that I have been crying for the last few hours.

I cannot see. I am thankfully able to type with my eyes closed but there are errors. What if I wait too long to see someone and wind up unable to save my sight? I am not faithful in the system. Right now I am afraid I will be deaf, blind, immobile, dealing with the Autism, and autoimmune. I have one of every type of disability, it seems. I am losing hope today.

If I want to pay for my eye care out of pocket, I can manage that how? They want more money than I get a month. Why are we choosing between Rent, Medicine, or Dental/Eyecare? Why is it you can eat but not see. Oh wait, I can’t afford food. I am a celiac. Silly me. Bread is at least seven dollars. I don’t buy bread. I don’t buy anything beyond just enough meat to survive. I am HUNGRY but there are no food programs that can accommodate my allergies. I am greedy to want that right? I am greedy to want someone to help me. I am greedy to want a break from advocacy. Right?

No matter how many other advocates there are, I feel alone. I feel as if there is no where to turn. I have to do this alone. I have to do this by myself. Who can I ask for help? What would they suggest that I have not done? I am all alone, as every advocate is at some level. There is only so much you can have someone else do for you.

It isn’t hopeless. I am after the jobs of the employees who hurt me today. That means someone else can be hired if they are fired for their incompetence. This might seem cruel, but, isn’t it just as cruel to mock someone for wanting medical care? It is just as cruel to treat someone like garbage because they are disabled. I have HUMAN rights. I have CIVIL rights. You want to mess with me? Go ahead. I bite.

Edit and End Notes:
I do not care what your God or Bible says about being alone either. I have been preached at, as if somehow my choice to not pray every time some idiot steps on my civil rights is my fault for being a non believer. I do not believe religion has much bearing on the affairs of the state. So, yes, this is a snarly article, and yes I admit I messed up by yelling and plan to keep fighting but leave your god out of my life. I haven’t needed your god to chance things for myself before, I will not need YOUR god now. Thanks for respecting my religion.

It is not religion that is shared when you ask an opinion or vent to me. I offer ideas. I do not expect you to worship me, my gods, nor is this the same as pointing out that I surely would feel better with YOUR God receiving my prayers. Seriously, are your gods somehow starving to death or something? I know plenty of people in those religions who are. So keep religion out of it. You won’t find my religious identity posted clearly anywhere.

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?

Why I did not turn to “God”

I am too tired to sleep. Instead I decided to read some disabled blogs. I am not a Christian. I rejected Christianity a long time ago. I do not reject Christians but I do not share your beliefs. My own religious choices come from exploration, to seek what is right for me. Part of this comes from the fact that the God of the Christians was used as a tool to facilitate the abuses I suffered. “God hates you. You must die to please him.” “God hates women who have short hair, and that child has short hair. She must have the devil beaten out of her.”

Two out of thousands of excuses that their God fearin folk used to beat a child. They used god as a reason for why I did not deserve to eat. A reason for my mother to stay with a man who wanted her dead. Before I was aware of my disabilities, I heard often how a disabled person found god. I keep a Jesus figure in my couch for occassions to “find” him and make the conversation stop, with a good laugh.

I do not want to offend anyone, but, I am offended by disabled people always being portrayed as God Fearing White Men. The man who saved me yesterday was Black. I felt comforted by his presence, as if two strong arms held me. Does this make god a black man? Some say feelings of security all come from god.

I am well aware that this conversation is a bit controversial. I respect many people of many religions. I read a blog by Wheelie Catholic with great regularity. I just ignore her posts that are just about god if I am feeling uppity. I am leaving god as a lower case because I am a polytheist. I believe in multiple dieties. Not every person comprehends the notion of one omnipotent and infallible being.

I cannot believe in one god. Instead I believe all religions come from a root need. I need something to put my faith in. I still pray, just to the gods that my brain can fathom. Religion begins with one person, be they a prophet (IE Muhammed, Jesus, Buddha) or a Seer. They see this unadulterated light, they feel guidance from it, and explain what they see. People see the light through them.

Eventually Prophet Seer dies. How do the people still reach the light? They take paint to the window that they looked through, trying to outline what they remember, and what they themselves can see. Over time, through generations, people might add things that are not there. They might try and demonize people who do not see what is there from the same perspective. They might forget some important lessons.

This perspective has let me help people who ARE Christians. I respect your religious choices, and expect the same respect. I may not always have my expectations met, and I am a known idealist, but I will not discriminate. I am reminded with this line of thought about a woman who discussed her life with me.

She was healthy, not disabled, but depressed. She was going to commit suicide and had come to a bookstore to find how to books as well as books on how to heal after someone you love commits suicide to leave with her body for her children. She had sent her disabled child to visit family, so that she would not be the one to find her. She felt drawn to me, she could see me in the shoes of her daughter, productively assisting someone else.

We talked for several hours about her life, and she wanted to commit suicide because she felt helpless. She thought if she died, her daughter could obtain the insurance money and pay for her medical treatment. I debated with her on the invalidity of this thinking, I shared access to resources, and she left with books on how to train cats. She is alive, right now. Her daughter did not lose her caregiver or her mother.

Isn’t suicide verboten to Christians? Don’t you go to hell if you commit suicide?

As if this wasn’t controversial enough, now I am going to bring up Eugenics and Hitler. I am against human euthanasia. I never thought about it, before Teri Chaivo. I was too busy struggling in my own blind existance and praying I could survive. When I heard about how she died I wanted to scream. I wasn’t positive that no one was home in her mind. I felt a sick certainty in my gut, as I had felt the snap of bone in my back, that she had felt each and every agonizing moment.

I began to debate in my mind about the value of euthanasia. It is wrong. I do not need more pressure on me to just die. My own nephew asked me why I am not dead. I explained to him that just because I hurt, doesn’t mean I do not feel joy and that I want to live. I have a lot to laugh about. I have a lot to live for.

I have considered suicide rather recently, due to the pressures of environment. I took away the abuser, and I haven’t thought about death since. I am still fighting to get my pain meds. I am facing another two month stretch without pain medication and this is frightening. I don’t want someone to decide that because I am aware of my rights and will fight tooth and nail for my civil liberties to be respected, that I should die. I do not want people to be put to death or denied treatment because they lack insurance. I was denied proper medical care and it disabled me further, doctors ignoring broken bones left me in permanent agony.

If you help someone die, add pressure to their lives, or even neglect them to the point that they must starve, you are a murderer. Our government is full of murderers in my eyes. When I think on this, I question all of these prolifers. Why is it that they can fight for an unborn baby who may or may not live, but they fight FOR the right to kill me? Most people who contemplate suicide have a reason they feel despondent. Usually there are ways to remedy this.

There is a woman out there whose name I do not remember, I heard about her hunger strike, to fight against improper care. First and foremost, the media victim blamed her, soft peddling the facts. Secondly, problematic patients are often given substandard care. No extra care is given for those with cognitive challenges. Often, when someone reacts with violence they are triggered.

This all forgiving God I hear so much about, the one who disables people for their own good, the one who lets children get beaten in his name. I cannot fathom his reality. The faith of millions of people, lead by a bigot (that would be the Pope), has been open to question. I am not so blind as to presume all Catholics agree with the Pope or even respect him. I am aware that the world is shifting, truths are coming out about the history of the Catholic church. Truths are coming out everywhere about reality. We are on the cusp of great change.

I do not feel hope when someone tells me how they felt god. I have felt my gods just as equally. I do not want to be told I have to be religious or even faithful now that I am disabled, but I do want people to question the Euthanasia debate from a standpoint of their personal religion, as well as a social one. History shows the danger of Eugenics.

Hitler was a gay disabled dark haired Jewish man. He hated himself so much that he tried to eradicate all disabled, gay, non blonde persons, many of whom were Jews. Eugenics were his tool. Washington and Oregon both allow for human euthanasia, and I can tell you now, other states may follow. Are we really going to allow for weak laws that do not require psychiatric involvement (as far as I know, I could be wrong) and for people who are “terminal” to die earlier? It may not sound bad to you, but, what does terminal mean?

I have heard it means a condition that will kill you. I have heard it is an uncurable condition. Does this make spinal cord injuries TERMINAL? Who defines terminal? I often disagree with medical professionals assessments of the condition the disabled live in. I lived in a very dangerous environment, and many people remain blissfully unaware that a respected person is actually an abuser. Many people ignore what to me is obvious. What if a person who hates the disabled comes along and determines that terminal means you are not white, have any physical ailment including Athsma, and must be redheaded? The end of the world comes.

One arguement for Euthanasia is that people are suffering. If someone is terminal, (definition meaning six months to live) they will die. Not true. My aunt has lived with cancer for over 25 years. Before I was born she was told she would not make it to the end of the week. She is still here, she is healthier than many people I know and she IS terminal. She will die from cancer eventually.

Arguements for Euthanasia also imply that the able bodied should have the right to tell me how I feel. You may look at me and see a woman shaking from pain, in a wheelchair who must surely hate life. I feel utter peace. Often, I find my internal balance can over ride the burning pain in my body. When I gave my speech today, I felt energized, I felt alive, and I did not feel like a disabled person. I felt like ME.

Euthanasia is bad. Some people may want to die, but, should they? Euthanasia devalues life itself. Do you think you should be put to death for your challenges? Do you think that if you break your back you will want to die? You might, but, you will over come the stupidity of people who ignore your rights. Euthanasia is prevalent with animals too. We kill thousands of animals, and people protest this. It still happens but there are some against it. Let’s not risk shelters full of rejected humans being lead to the slaughter. Can anyone say Soylent Green?

You are a Fighter!

I have a list of ailments and challenges, and in one of my conversations someone told me I am a hell of a fighter. I am not. I just have to work to have a life. That is one of the things that got me to take pain medication. I had no quality of life. This is where I get frustrated by things like the Teri Chaivo story, people want to prolong the lives of those with no hope of quality, and that is fine, but, to blatantly torture someone is not, and where is that line? Personally, I am not certain, though I wish it was clearer for me. Do I want to live forever on tubes if I am really dead? Absolutely not. However, what if the doctors are wrong? Does that make me a suicide or forcing someone I love into Murder?

The moral lines are very murky. Morality itself is questionable, as who sets the moral compass for others? Does my doctor share my own Morality? How can I know? Asking is considered politically incorrect. Do I want to know if they do not agree with me? The odds are that they do not. My religion is not up for debate, and neither is theirs, yet, religion is what is often cited as a moral compass.

What does it take to truly be a fighter? I do not think I really am one. I know that I have to army crawl through life, but, doesn’t everyone? How can I say that my multiple disabilities make me a better fighter than someone who I percieve as perfectly healthy. There are hidden disabilities out there, some of which might even be up for debate via personal interpretation. There are people who see me in my wheelchair and do not comprehend me as an intelligent being, and others that presume every disabled person is just a faker.

Yes, I fight daily, but, it is a personal struggle. This doesn’t make me a fighter, it merely makes me human. To be seen as a fighter might be an honor, one I am not sure I want. I just want to be alive. I want a life free of discrimination, and I want to remain who I am. I would not be me, without my challenges, and therefore if I am a fighter, it is merely the nature of the beast.

People often claim to fight diseases, another thing brought to mind whenever someone tells me I am a strong person or a fighter. I have even used the words myself, for other people. I have an aunt who has had Cancer for longer than I have been alive. She endures, she fights, she struggles. She is also gentle and I never see her as the warrior archetype. I see her as the almighty Mother, iconography aside I do not see her as a fighter. Perhaps it is because of my youth. Perhaps it is because she is a private person, hiding her pain most of the time. Does claiming you can fight an incurable disease make you a fighter? Does enduring it give you the title?

Is there a better term? I admit that survivor is appealing, though when you are in the thick of surviving it doesn’t apply. Maybe, I just want to be told “Oh, hey, you are a person.” Maybe I am a fighter, but, I just don’t see it.This doesn’t mean I do not get tired, it doesn’t mean I do not fight for my rights, it merely means, I see myself as a writer, a cat owner, a cat ownee, and even a friend, before I see myself as a fighter.

Are you a fighter? What does it mean to you to be a fighter?

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