News: Not Bad!

I decided it is time to update on the status of my recovery. Physically I am not doing well. The Vertigo is really a challenge. I am fighting on so many fronts at all times that I feel worn out. I still cannot sleep. I am still me. I haven’t managed to find a therapist, nor have I been able to convince the insurance that I need a therapist. Sometimes I think that the government wants all disabled people (hidden, visible, mental health related, etc, I do mean ALL) to just die. They hamstring our ability to get care so often, costing them more money, that it seems reasonable to think that they would be happy if we died. All of us. At once.

I am still depressed. I am still fighting for emotional stability but my news is this. It has been one week since I wanted to kill myself last. I am still struggling with the desire to self harm, but, the ideas aren’t to kill myself now. Some of it is the old voices of my parent’s messages. My lack of value for anyone but myself takes a toll. If I hurt myself, I can punish myself and make the bad go away right? Still. I want to live and I am able to not self harm.

With all that has occured in life and the general lack of support I am doing amazingly well. For my own standards I am reaching good enough. I am on the rise. I have goals again. I can feel the words moving under my flesh again wanting out. I am still afraid, going out still terrifies me but more of this is now related to my physical body than “He could get me”. I even considered dating. I decided I am not ready to date but, I may sometime give it a whirl. I want a working wheelchair first and I have to find good spots in my riding distance because I am not going in a car for a date.

I do find it odd I have more dating options as an openly disabled person than when I was passing for abled. So over all things are not good but not bad. Just shy of good enough.

Being Suicidal (Trigger Warning)

Before I share my writing today I am giving a bit of a prologue. This is serious, and this post is a long time coming. My scooter is repared thanks to your support, and that is one of the better things. I have a full time caregiver who is fantastic, and I am working on getting better.I will write about the good stuff soon.

Please read more, I am covering this due to the serious trigger warning. I don’t do that often.

Continue reading

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.

One persons Courage…

You hear about it in the news, inspirational articles, and in the whispers of people discussing someone’s life. Sometimes you hear it to your face. “You are so courageous.” I have been facing my fears lately and there has been some courage yet, most of what people tell me is courage is merely a will to live. Is the Will to Live what makes us couragous? Does this invalidate courage?

When I hear about someone being courageous, brave, or something along that line the picture in my mind is a bit gender normative and sexist. It’s a brave soldier in a black and white movie with bombs exploding behind him rescuing the little woman and running away from gunfire without breaking a sweat. I am well aware this is a very skewed image that remains in my mind. I use this image to invalidate my own experience often.

How can I be courageous? I just didn’t give up. I didn’t notice it until tonight. Giving the speech about my Thirty Seconds, I was reminded it is courageous to save a life. I found myself afraid of those words. Why fear courage? I think it is the responsibility to be something more than human that the media shows us courage is. Batman is couragous. He’s a super hero. I am just a small and broken woman at the end of her endurance trying to make it through every day.

I am trying to teach myself what courage can be, beyond the black and white John Wayne dreams. I am trying to teach myself that courage is simply living. Transgendered people who have the courage to go through the change, to live in the sex that fits their minds and not their bodies are courageous because it is their will to live. They can die for being who they are.

How terrifying it must be to have to pee in public. How terrifying it must be to go clothes shopping, to go out and feel that fear… what if someone figures out who they are and in their ridiculous hatred they attack? That is courage. It is also horribly sad that we live in a world where it is not a hate crime to attack a trans individual. I didn’t know that until recently, I thought that it was a hate crime. It should be. Living without a legal saftey net, living without basic human respect, and living without the ability to be accepted by any other minority (except for some of us who actually do care) takes courage. There are trans persons who are unable to live as they wish, because it is too dangerous.

It takes courage to live at all. It takes courage for the college student to go to her late night class, because she hears all the warnings about rape. It takes courage for the woman who was date raped to speak up, risking victim blaming and slut shaming. It takes courage for the teen mother to take pride in being a mother, bucking against the stereotypes about teen mothers. It takes courage for the disabled man to go up a flight of stairs on his hands and knees to see if his able bodied friends and family are alright after hearing a gunshot. He couldn’t escape if there was a killer. That is courage.

To revile the word courage is to revile the act of living. It takes courage for our students to go to school. We live in a world where the terror of school shootings is very real, where the hate that a disabled student feels can destroy their minds and their souls. We live in a world where there is no safe haven. It takes courage to raise a child with disabilities and to love them. It takes courage to admit that you are disabled.

It takes courage to say that you do not want to see a movie because it is full of sexism. It takes courage to be a Womanist. It takes courage to be a Feminist. It takes courage to be an advocate. It takes courage to write. It takes courage to cry. It takes courage to go out, knowing discrimination is waiting for you. It takes courage to date a person who is of another color. It takes courage to love someone who is of the same sex.

In a world as full of toxic messages, it is cowardly to defame courage. To hold the power to inspire one person is enough to change the world. To inspire countless thousands? That is a gift unparalleled. Forgive me for feeling that I was unworthy of the word courage.

I have been courageous. I am courageous to write about my time as a Victim. I am courageous to have ideas and to share them. I am courageous to start a business during a Depression.

You are courageous too. I am sure you can list ways you are courageous. I would like the comments on this post to be dedicated to your courage. What have you done that is courageous today?

Today my act of courage is to start planning the wedding ceremony for two young women in love. My acts of courage in life will include officiating their wedding ceremony. I do this with pride, and to honor their love and the courage it takes to stand up and proudly say, “I am Gay, I am Pagan, and I am in Love!”

Thank you for your life. Thank you for your courage.

Burned at the Stake (Trigger Warning)

I was eight. My family had just moved from one small town in New Mexico, up to another. I want to name it, but, if I do it reveals too much about who I am. I keep my veil of safety. Being pale, with red hair and my own inhibitions in communication I was an outsider anywhere I went in this state. In small towns however, there is a generational acceptance and a strong xenophobia. That which is different isn’t just feared it is hated.

The children in this town were taught that red hair meant you were a witch. This lesson came along before I did. The further stigma of not being able to tan implied this further. I remember the attack, though it plays in half segments, like a badly edited movie and I feel like an outside viewer. I was on the swing, trying to kick the tree branch. Despite my fear of heights the Swing was as close to flying as I could get.

The other kids were calling me names again, chanting them at me, one threw a rock. The film skips. I must have fallen, my shoulder was out of place and my legs hurt. I was in a corner now, and I was quiet, I hadn’t learned to make them feel fear yet. They were new threats. The film skips. I hear the bible verses, half misquoted, none of them had actually read the bible they were just paraphrasing their parents.

“You’re weird.” Silence. “We should kill her.” Fear. “She’s a witch.” Confusion. “Thou Shalt’ not Supper a witch to live.” I did mock them back at that point, correcting their mistatement, “Suffer.” Fear. Suffering. I hurt. The teachers who watch and protect the students watched, they did not say a word.

I ran, I could feel the bones in my knees and ankles grinding, my hips hurt and crackled loudly. I could barely walk, a familiar feeling in daily life now. I cried too. No one wants to die. I thought if I died no one would protect my family. They laughed at my terror. I tugged on my teacher’s sleeve and begged, “They said they’ll kill me.”

“Go play.” The film skips. It’s the next recess. The sun is lower in the sky, and my body aches more. My shoulder is still out of place, but so is my elbow. The rope cuts into my skin. My lip is cut, my glasses are broken so their faces are just blurs. “Witch. Witch.” I feel the sticks under my feet, one of the boy scouts is rubbing sticks together to try and start a fire. I am being burned at the stake.

I did not cry then. I thought I was going to die. I closed my eyes, and I did nothing. I did not pray, I did not let myself feel. I just felt things. Mostly, I felt relief. I thought then I would never have to see my father again, or the older boy who had already found a new victim. I thought if I died my mother would be happy again. I thought the world would be a better place.

A sharp pain comes, and I start to cry. It’s not fire. They failed with fire and one of them threw a rock. The film skips. I cried, I knew I was bleeding and I knew too my guardians did not protect me. I had no teachers who cared, I gave up then. I gave up living in my heart. I had already been broken, I had already been beaten. This was just proof that the world was a place of pain and violence.

Proof no one could love a piece of trash like me.

Invalidation of a person. “She’s weird.” I did not scream, and I did not shout. I just waited to die. Why was it taking so long? Why couldn’t it end? Why did no one do a thing to stop them? Was I so very bad that I didn’t get to die? Was I so very bad that I was going to die?

The bell rang, and everyone else went to class. My teacher’s voice came as a snarl, “You will be counted as absent for the day.” She always looked away when the other children hit me, cornered me, and this time she had just watched. She looked away too when she caught one of the teachers raping another girl. This was the same. It all felt the same to me. No tragedy worse than the others, every breath was tragic and full of pain.

The third recess came, I hurt from the sun. “Whore.” I did not respond, I did not look up, I just stayed silent. “Slut.” More rocks came. One of them found a lighter, maybe a teacher gave it to them. The film skips, plays backwards, the insults the same, a chant of hate. The film skips forward. They have a stick that is burning. My ankles are covered with debris, rocks and sticks, a branch pulled from a tree. Dry tinder, dry grass. The lighter is set to the flames.

I wasn’t afraid anymore, I just watched the sticks burn, listening as they cheered. They were killing me, but, they were happy. I wondered if my mother would be angry at me for dying, or if she would be happy that there was one less mouth to feed. I could hear my father’s threats, I could feel his hands on me. Everyone said I was evil, so dying was right. One less bad person to ruin the world.

My feet hurt, but, I just stood there, tied to the tether ball pole. The principle suddenly was there, the film must have skipped again, but, I didn’t care. I just wanted to make them like me, so I would have to die. Then, maybe my mother could love me. I didn’t know she already did. I thought I was bad. I thought that every lie said was truth. I never heard the good, I don’t think it was said.

I heard yelling, I thought it was more hate. “How dare you just watch?” A knife was drawn, I thought the principle was going to kill me. I had been out in the sun all day, I hurt too much to think. The film skipped, he was carrying me inside. The teachers went back to work, watching. “Who did this?”

Silence.

Eventually I told him, all I could remember. I told him, and he cried. I thought that meant he knew I was evil. He called my mother, I don’t know if she answered but she did not come for me. My teacher kept her job, no one was punished. Only my body, my mind. He drove me home, he said he’d do something. I am sure he tried.

When I went back to school the next day, we started to read about the Salem Witch Trials. Everyone laughed about setting me on fire, about burning me. No one asked if I had blisters on my feet, if it hurt me to walk, or commented on the fact that I had blisters on my face. It was funny. The film skips.

It was all my fault, my mother said, if I just tried harder to get along. If I was nicer. The film skips. Years this time. In and out of the institutes I had already been, I was tired of it. Someone called me a witch, I fought back. I did not want to burn again.

The scars are hidden by other scars. No one was punished. No one cared enough. I was just a little girl, I wasn’t like them. I never will be. Over the years, I watched them as an outsider. I watched them live, I watched some of them die. None of illness, it was always stupid and preventable. I watched them age, I listened to their cruel words.

Every year, they reminded me about it, about the time they burned the witch. I still don’t know why it is funny. I was always threatened with a repeat performance, whenever I did not give them their way. My mother asked why I never had friends. Because I was the Witch. I took their mantle, I practiced the craft of hatred. I made them fear me.

I committed acts of violence, and I learned to hate. I never forgot that my siblings watched too, I never forgot that the teachers watched. There was real danger, there was no medical treatment for it. I had to walk to school until my feet healed, with burns. I had to feel the pain. I still feel some of it.

My sister found a half acceptance by selling her body for it. She let the boys do as they would with her. She let herself be their perpetual victim. It helped that she was born to be blonde, blondes cannot be witches you see. Their culture too taught them that the blonde women are the most desirable. My brother never found acceptance, he ran off as soon as he could, starting adult life far too early. Facing different pains than I.

My siblings who were born while we lived there still never quite fit. Generational Acceptance. Their great grandchildren just might fit in. I hope if they do, the town changes from violence and hate to love and acceptance. I never forgot who watched. I can still list the names. I know too, if my principal had not been sick, his age catching up with him and his body failing him slowly, they would not have just watched. He was a good man. One voice trying to teach them to love.

I never just watch. I will open my mouth at risk to my person, if it feels right. I will lift a hand to help someone if I can, or I will find a way to act. I never just watch. A part of me is forever burning, forever marred, and forever marked. I hear often that bullying is harmless. It isn’t. That was written off as bullying. I spent the rest of my educational career in terror for my life. It’s never just bullying. it is sheer and abject cruelty.

Is it just bullying to throw rocks at a person hoping to kill them? Is it just bullying to set someone on fire? Is it just bullying to blind them? Is it just bullying or is that the excuse given to make it alright to watch? What are you watching happen? What do you let someone do, that costs another?

Every word, every fist, every rock and the fire all took from me. Every adult who just watched is more guilty than the children, because the children did not know better. They only knew what they were taught. They were taught to persecute outsiders, to shun those who were different and to fear any slight varient. They were taught that god hates difference. They were taught hatred.

Not many people in that town grow up and function well outside of it. Part of it is the high density of criminals, hiding easily from the law. Part of it comes from the number of illegal immigrants. The lack of proper education, in a state that always falls in the bottom categories, this is the town that scores the lowest every time. The deficits that these children face disable them further than anything ever has me.

They burned me at the stake. I am struggling to forgive, but, when one of them ventures out of their town or when I must enter it’s borders I still feel sick and fearful.

They burned me at the stake. No amount of explanation or justification will ever make that alright. I may forgive them but I will never forget. I will not pity them, I will also not abandon them. If I am given the choice between watching or acting, I will act. I have to, I must rise above the actions of abuse, incest, torture, and pain. I must rise above. I must heal. I give myself this edict.

They burned me at the stake. There was no justice, there was no help, there was no relief, there was no escape. I had to face them. I had no safe place. I had no one to trust. I wasn’t just lonely, I was in a desolate place, beyond the reach of the rest of the world, wrapped in torture. Reality was worse than any horror story I could read. It was all just a nightmare, except that my nightmares ended eventually. I was beyond suicidal, I was beyond help, because no one offered help. I was blamed. I was a victim. I was nothing like who and what I am today.

They burned me at the stake. There is no forgiveness yet, but, I am trying. Each word written here is one word closer to forgiveness. I have forgiven myself for not being stronger, for being afraid, and for being a child. I have not forgiven them for their cruelty. I have not forgiven them for demanding kindness when they felt pain, for denying me my right to be a person. I am trying. If I can forgive them, then perhaps someday I can forgive my biological father.

I might never forgive them.

They burned me at the stake.

Isms, Hisms and Hersms

I read a few blogs on the internet circuit, some of them deal with feminism, some deal with racism, some deal with ableism, and others deal with Fatism. Isms of all shapes, sizes, colors, and one for each of us, sometimes two. Someone was having a sale on their isms when our culture was created, tossing them out like sprinkles on a cake. I am tired of isms today.

I have a great doctor. I will recommend her to just about anyone, for in her office there are no isms, just lists of things to get done. I now have an epipen, a referral for the dozens of undiagnosed whats its, and even a new diagnosis. I also was given the option of advocating for breast cancer awareness. The point was made that with my body being as it is, I have become acutely aware of risks and am in the perfect position to teach other disabled women about breast cancer.

I have thankfully never had breast cancer or even felt a strange lump but I do self exams weekly. I know it is recommended that you do monthly examinations, yet, this is not enough for me. I have relatives who have had cancer in all of their parts. Breast, brain, uterine, ovarian, liver, lung, you name it, and it has had cancer. I also have a lot of conditions, including one that effects my skin and therefore hypervigilance is necessary. Beyond this, what has made my doctor decide I am a great advocate? Self adaptation.

My breasts weigh a lot. Not only is the tissue very dense, making them pert and perky despite their size, but, it makes it harder to find lumps once you breach the FF quadrant. I left that a long time ago. I shared with her today my methods for a successful self examination. I have to adapt to the needs of my body and this means I may lay on my side, I may hang upside down, but, I always make certain to feel not just my breasts in a circular and consistent fashion, but my armpits and down my sides a bit.

I am lucky that I have had strong women in my life. I have an aunt who has had stage four Breast Cancer for longer than I have been alive. This woman has fought, and fought and thrives. She does at times worry her family for her life, but, she has dealt with cancer with no break for over twenty five years. In my mind she is the best teacher I can have about why cancer awareness is so important. Without knowing her, I might not have decided to live during one of the bouts with suicidal thoughts that I went through as a teenager. I might not have begun to battle with myself for proper medical care.

I have a lot of diagnosis, the list grows daily, but, my isms are mine. I am a short, fat, white girl in a wheelchair. I am also blessed with very rare breasts, the sort that women have painful surgery to mirror. I have great hair, great eyes (when they see) and a brain. I am facing daily challenges with ableism, fatism, and even some fetishism. Sexism is a consistent battle. I also face the blessings of people who are better than the isms. I face the knowledge given to me by my fellow females, and now I must learn to share.

Take stock of your isms, be you male or female. Take a look at what you are given by station in life, what you have fought for, and, if you have enough to share, reach out and help someone rise above. I will post about my chances to advocate for breast health. I am even going to start getting mammograms, a need I had hoped to put off for at least ten more years, but perhaps I can come up with a way to make them less painful.

This is hardly a new idea, I am merely following in the path of others who have taught me. This is not an area I had ever expected to be asked to advocate in, but, how can I deny the request when I know that even one person may become self aware?

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