The Last Post

Textual Fury is now an Archive. Below is the last post written here.

 

Something I have noticed about abuse is, when you speak out about it invariably people will defend the stalker, rapist, or abuser. They do not know this person, and they may know the victim but there is something ingrained into the world that has trained us that anyone speaking up about abuse is lying. Its fascinating to me, on several levels. In part this fascination exists because it shows how widespread and systemic abuse is. This is perhaps where some people will think this is me talking rape culture, but rape culture is actually only a facet of the problem.

One of the first steps an abuser takes is gaining power over their victim, by making certain their victim feels fear. This is done by threats, sometimes violence, and it encompasses all you love. It can be a threat against your mother, father, siblings, pets, or other people you care for. The abuser can even be one of those people threatening themself. “I’ll kill myself if you go.” Especially with a parent this creates the false burden of responsibility on the victim. This act also includes the beginnings of erasure and silence. To protect yourself you must not talk about the abuse, because they will hurt you and whomever they threatened.

Sometimes this is true. Sometimes getting help, breaking those rules is costly. The most dangerous time to be abused is when you leave and when you get help. This is widely known for people who are leaving abusive spouses but what is less widely discussed is for children with abusive parents. The only acceptable victims in society are women being beaten, but never raped.

Why does acceptability matter? If its okay for me to admit I was beaten  by my husband but it isn’t okay for my step father to admit that he was beaten by many of his wives there is no room for him to ask for help. If it is only acceptable for children to be abused in certain forms, then there is no help for some of the most dangerous types of abuse. We do accept that sexual abuse occurs in this society but we deny at the same time the rights for aide to those victims and even children as young as I was when I took on an adult abuser and got him arrested, endured a trial, all of four or five? They have to prove that they weren’t ‘asking for it.’

There is no need to forgive or redeem your abuser. Often when breaking the rule of silence, which perpetuates even now that I am no longer being abused, people will ask me why I don’t just forgive my abusers. That isn’t my job. Forgiveness isn’t something you can just hand out on plates like cookies. Forgiveness is an act that one can only do for themself. I forgive myself, and sometimes struggle even after, for my mistakes. I made the mistake of emulating my abusers for a time in my teens, and I had to learn that this while not being okay doesn’t make ME a bad person. The line between the abuser and victim can be thin, and many victims become abusers to protect themselves. I did. I also learned another way, and it was far from easy. In doing so I learned why my abusers used Christianity as a cover. The easy get out of hell free card of saying “Well God I fucked up again, oops sorry.”

This is not how all Christians use the forgiveness they feel of their deity and in fact I learned the truth, for me, of Forgiveness from my friends who are very religious. It was in my quest to understand how they can believe in something that my experiences showed me the worst side of that they showed me how forgiveness works. I accept what I did wrong, I strive to change how I react, enact, and choose so that I do not repeat that mistake. I accept that I am still a person worthy of life? That is part of forgiveness. That relief when you realize you have survived can be forgiveness too.

You do not have to forgive anyone else. Its strange, counter to many of the vapid platitudes and cliche statements society throws out but many of those are things that enable abuse. “Everything happens for a reason.” “God wanted to put you on this path.” “God has a plan, this was just part of it.” “Forgive and Forget.”

Forgive and Forget to me is a most dangerous sentiment. If you forget your abuser’s actions you let them repeat them. Having a brain injury and spending years without knowing what happened? I became aware of how dangerous forgetting is. It isn’t inherently permission when it is not your choice but willfully ignoring the patterns that abuse takes can get you killed. Forgiving your abuser and looking away as they hurt others or yourself is not in fact healthy. All my life I was told to forgive and forget, up until my mother was hurt by a violent exhusband. Then? She was suddenly okay with not forgetting but still was hell bent on the world forgiving.

When other people require you to explain your abuse, they aren’t necessarily doing this to hurt you. Some people live without abuse. I cannot imagine that. I struggle to imagine happy family time. I get a bit of a headache trying really but I know it exists. My friends have often proven this to me, books have, it is just not something I have experienced first hand. Sometimes it is a case of the opposite extreme, where someone has little to no experience with abuse so they cannot fathom how your mother wanting to know how you are and ignoring your requests, which to them are odd, to be left alone is bad. They don’t know how stalking is bad, because the media has few examples of it not being a victim over reaction. They cannot know the fear that curls around you and pierces you because their experiences have none of that.

I admit fully I am jealous of these people. I admit that I am also happy for them. Its a strange combination and again it is another moment where the standards we are taught do not inherently line up. There are healthy forms of jealousy. I can be jealous of the small child who I see laughing and hugging their parents because I never had that, but my jealousy does not make me want to destroy it, I want more of it for them. Jealousy is only toxic when you let it be a reason to hurt others.

This blog has always been about breaking silence. That is why I am not deleting it. I have come to a decision that I put off for a while, trying less drastic things than wiping out my internet identity, my real life one too. I feel a strange peace with this now, which I did not feel before, but it is time. Textual Fury will remain as an archive, but I am not going to let myself feel that fear. I have begun the process of deleting my facebook, while retaining contact with the people who matter most to me. I have already destroyed my old email. This is the hardest one of all. I cannot say I will ever stop writing, but my growing silences over the years are related directly to stalking, abuse, and crappy health in that order. I am a survivor and so are many of you. So I am trusting myself. I am trusting that this is the right decision.

Deleting this blog would be part of the trend of silence. Instead I will write the rest of my novel, I will write another one, and another one. My silence cannot be bought. I am going to only get louder. I am grateful to you all for supporting me for the last few years, to the people who find this blog and find out they are not alone? I am happy for you too. I leave this blog up as a symbol of rebellion, a ringing bell, and because I love everyone in this world, and I want the best for them. It just cannot be at the cost of my own safety. This action doesn’t make me give up freedoms, by letting go I am gaining them and a sense of security. It is rarely both, and it is not easy.

An Informational Guide: Too Disabled For Contact Lenses? Not Likely!

I was told I was too disabled for contacts a few times in life. When I was a teen and my glasses first began to cause headaches from the weight of them, that was the verdict. The insurance however did cover, due to the heft of my prescription thinner lenses fully. As an adult they quit doing that and it became a three hundred dollar a year expense, due to the needs I have in glasses. I wrote off contacts and the nightmare stories my not so great parents told me about them had me certain that I was a contact lens away from blindness. They lied and twisted facts to make me fear something that is simply to me now. The simplicity comes with experience and adaptation.

I am not a contact lens expert but I am an expert in being disabled. Like all other people with disabilities I am a master of adaptation. It is how we survive. So when last year my ears began to bleed and the pain in my nose was so great I couldn’t bear it I mentioned it to my doctors, one of them was smart enough to figure out that ehlers danlos syndrome plus glasses as heavy as mine may be a problem. A few pokes and prods later and it was confirmed my glasses when I wear them tear my ears veeeery slowly downward and push the nasal bone up into my head. Wearing glasses became one of those terribly dangerous things.

This left one solution. Contact lenses. I am a wheelchair user with an inaccessible apartment, one arm guaranteed to function, limited guarantees of hygiene due to allergies and the sheer number of medical things that can and do go wrong in a given week. Yesterday I couldn’t use either arm and was relegated back to my glasses. I am still not in them full time but that is as I am told normal. As I said I am not an expert. Its about sixty forty, in favor of contacts now however. I spent weeks hunting for answers on how to adapt contact lenses.

1. First things first, expect it to be hard at first. Then easy. Like all things its a skill that takes practice. You will not be allowed to take your contacts home until you can show them in their office you can get them out and put them in.

2. Its okay to not do it their way entirely. What truly matters with contact lenses is the hygienic environment. Since I cannot stand before a mirror much less reach a sink in my wheelchair I began to cheat. I wash my hands very well, dry them on paper towels, then cover my hand rests and controls with more clean paper towels and put one on my chest for the inevitable dropped lens. This probably won’t work for someone using a manual chair but my point is to adapt the methods to your needs as best you can. My contact lens solution sterilizes so I also compensate by covering my hands in it before I begin, and before I go hand wash I have laid out my eye drops, my solution, my closed contact case on my previous paper towel. This means less fussing.

3. Referring to two not doing it their way. The people who will teach you how to contact lense do not often have to adapt their methods and thus may not know how. I was told to get a mirror with a lot of lighting, to use both hands (and just try because lifting my arm and dislocating it was beyond the comprehension of the very nice but not disabled contact lense woman).I did try that at first as there is a hand dance involved. One hand is to pry your eye open and the other to present the lense just so to your other eye. This of course was not possible for me. I adapted the method to my body by using my middle finger to hold the lens and not my pointer, and moving my head to the lens on my hand. I also do my best contact work in utter darkness and have not once succeeded with a mirror. Its pointless as I am nearly legally blind, I hover in that cusp of low vision that comes before it. If I cannot bend my head down to the other hand I will often use one hand and my middle finger again prying my eye open with thumb and middle finger and my pointer to insert the contact.

4. Everyone, able bodied or not, has to adapt. I quickly became aware of the silky sensation of the contacts in my eyes, and I rather find it pleasant. In my case this is in part due to being able to buffer my intensely dry eyes with a liquid barrier. I expected it to be gooey but my lenses are soft and smooth. Being sensory aware due to autism and some jacked up nerves it was easier for me to without vision find my contact lens and control it. I am the fastest to adapt to this that the contact lens specialist has seen, to date. Many people who can see and are “normal” as much as that exists struggle to differentiate the sensation of the contact lens from the solution. You will find the things that simplify contacts for you.

So now that I gave my vague tips that all boil down to, don’t be afraid to experiment a little and adapt, my method in detail is as follows:

Get up, do not put my glasses on as I get a headache going from contacts to glasses, though you may not. Due to low vision I am very adapted to my house and not seeing but may still step on a cat or their toys. If you choose to experiment with this I highly recommend you practice placing your wheelchair in the same spot and with someone there pace your steps so you memorize the lay out of your house. Things must go back exactly as they were or you will walk into things and otherwise hurt yourself. I go to the bathroom, then put eye drops in and set up my lay out at my desk all the way in the living room. Return to the bathroom, wash hands really well. I pretend I am a surgeon. Return to the chair with paper towels and go back to my desk. I go slow when blind and warn the cats. So far no accidents.

From there I close my eyes and see which eye burns less. My eyes burn first thing in the morning and sometimes it never stops. That eye is going to be the easier one. For me it is almost always the left eye. I save it for last. My right eye has scar tissue that makes it harder to get lenses in. However, even without that one eye will always be harder than the other due to the fact even ambidextrous people like I used to be when I had guaranteed arm functions have differences in each side of their body. My scarred up and roughed up eye tends to be belligerent and sometimes swells up from just eye drops. I also sometimes get hairballs in my eyes while I sleep and do not know it. So I take my time and I put drops in until I cannot feel it then close my eyes and wipe away the excess. This last step seems to really help me in getting rid of debris.

From there I pick up a lens. If its a fresh package I still do this as I found a warmed up contact is a lot easier for me to insert. The solution makes the lenses colder and with Reynauds my cold sensitivity is very high, and this took away an aspect of pain. I will not pretend contacts are painless but they are not agonizing and after they are in my eyes hurt less, so its worth it for me. I drop the lens into my palm on my left hand, aka the useless floppy arm, and clean it as I do on removal. I rinse it well then place it on the finger needed for the current eye. I then put eye drops into the cup of the lens after checking it by holding it very very very close to my eye for defects. This last part took some adapting as I still cannot really see it, so much as I se elight changes without my glasses. So I had to learn what cat hair, my hair, extra grime, too much skin oil, and tears look like via trial and error. This is also true of the dreaded inside out lens. The light refracts differently and you just have to learn. This part I still try for when I do it in the dark but its harder. I needed total darkness at first to succeed due to light sensitivity, and built my way to being able to do this with lights on.

Free of defects I then move my eye to the contact. Thinking of it this way means for me there is less fine motor involved. Others may need to approach it the other way around. The eye drops will sometimes spill or fold the lense but often I get it in on the first try. I close my eye then add more eye drops. You may not need as much ocular hydration but due to having thin eye tissues I have the worst case of dry eye my eye doctor has ever seen. This is a trait that the other people I know with Ehlers Danlos seem to share.

I keep that eye closed and repeat the process with my other eye. If my eye burns and eye drops do not solve it or hurts I remove the lens. There is a list of impossible things you will possibly be told by your contact lens specialist such as “Its impossible to put a contact in backwards.’ No, you can. So its important to remember if your contact hurts take it out. Sometimes I missed a cat hair, once it was torn, and once I had torn my eye the night before due to ye olde super fragile tissues and the lens being stuck to my eye from dryness. I thought I had hydrated it enough and was wrong.

I change the paper towel daily for this last bit before we tackle removal because that has to be adapted too. Rinse your lens case as needed for your solution. I had one where it was a no rub solution but the solution itself was too hard for me. No room for shaky hands or error, then because the peroxide base turned to pure water my eyes reacted and it hurt. You will during fitting be asked about these things, depending on your needs you may have a LOT of options or a narrow field of options for your solution. There were only two safe for me to even try and the first failed. I was lucky that BioTrue which is essentially tears works for me. It might be wrong for you. So clean eye case, leave it where its safe and can dry.
I may take my contacts out anywhere from four to eight hours later, I try to not go over that as personally, and again this may be different for you, my contacts start to get really dry about six hours in and I need epic amounts of drops. The when depends on how I feel. you will master your own eyeball sensations for it. My personal gauge is if my eyes still feel “tired” after eye drops. Often for me tired eyes, or the need to close them without needing to sleep is a sign of dry eyes. I personally apply drops on the hour, sometimes a few times in between.

Removal:
This is for me much harder than insertion still. I am tired so my body is less coordinated. My lenses often do not want to budge. I go through more eye drops at the end of the day than any other time. This is due to the eyeball tear and being cautious. It also has prevented more tears, even in similar conditions of dryness. I was told to press on my lens and drag it with one hand while prying my eye open to get my lenses out. The method taught to me NEVER worked for me. What I do is I look to the side, then with one hand pin the contact against my eye lightly, if it does not squish a little I add more drops. From there I slide the lens towards my thumb adding a little more pressure. This is not poking my eye but a small amount of pressure and it is to me painless. Most of the time the lense pops right out and I can proceed with the ascribed cleaning regimen for my lenses. I then put eye drops in my naked eye, and close it. I always do this one handed, forgoing the hefting of lids to get past my lashes but do open my eyes as wide as I can. This is certainly possible in part due to my eye shape.

I hope this helps someone considering contacts. There is no “If I can do it anyone can,” but if I can do it a lot of other people surely can despite it feeling impossible. It is a skill like any other and takes practice. With that in mind do not expect success the first time, no one truly succeeds doing this their first try. Expect to adapt, expect sensory challenges and if you are disabled or not, don’t be afraid to ask for things like dimming the lights to get started. The people who are working with you are there to help. Don’t  be afraid to do it your way, there is no one way, there are just standards that you must keep in mind. The most important thing is cleanliness. the need to close them without needing to sleep is a sign of dry eyes. I personally apply drops on the hour, sometimes a few times in between.

ely can despite it feeling impossible. It is a skill like any other and takes practice. With that in mind do not expect success the first time, no one truly succeeds doing this their first try. Expect to adapt, expect sensory challenges and if you are disabled or not, don’t be afraid to ask for things like dimming the lights to get started. The people who are working with you are there to help.

Why Bullying isn’t Healthy for ANYONE, a post intended for Karen Kabaki Sisto (Trigger warning for everyone else also I cussed a bit))

I know I have not posted in some time but the surgery I had and slew of failgivers and bad agency issues took my writing spoons for survival. I am just getting settled with my new carer from a new agency and this article has come out that I cannot even finish. This post like most of what I write has a trigger warning for a reason.  Here is the article by the person I am chewing out below.

Dear Karen-

I am calling you out. The initial title of this post? You better run bitch. Why? The internet is coming for you. You see you did something stupid. You wrote an article that promotes bullying. The idea that bullying is acceptable for anyone is already disproven. Children die daily because they cannot endure bullying and the pain it is caused. These are not just autistic children but children across the human spectrum, some of whom fall into the category of normal. People of all ages are bullied for skin color, eye color, hair color, weight, ability, and so many things I cannot list it all. Bullying is always arbitrary and boils down to psychological trauma that sometimes never heals. It shatters confidence.

The article, as far as I could read sounded like my mother. I deserved to be bullied because it would make me stronger. I was weak because I couldn’t take the pain. That is bullshit. I am not weak. Medically, I admit I am, but mentally I have dealt with things people should never be able to imagine coping with, and I am still alive. I have spent my life aware of death itself because of my body and more so my family. My family of monsters. I am angry this was written because there will be people who do not think before they act, and will traumatize already fragile people. Autistics get bullied all the time, this simply removes potential resources. Of course this is also from the people who created the ABA system of abuse. They call it therapy but I mean mother fucking abuse.

In the end I cannot stand by and be silent on this. Bullying caused me to cut myself. With my medical conditions this could be fatal. I thought between my parents and the other children I deserved pain. I thought that if I cut myself maybe they would stop. If I hurt just a little more I would be purified by that pain and worthy. Some of this is through the lense of absurd religion but not all of it is. I am crying as I write this because I know out there people are dying a slow death from bullying and this article will cost them dearly. I am crying because I cannot protect them if I am silent. So I am roaring.

Here are ten effects of bullying regardless of autism.

1. PTSD- Post Traumatic stress is not a choice there is no pushing through it and it can forever undermine self confidence. Avoiding triggers is the treatment, and like avoiding allergens to not die or spontaneously combust into hives and anaphalaxis this is not really effective because its impossible. Anything around at the trauma from a scent, lighting, touch, voice, words, or even clothing can become a trigger and you will not know until you find out the hard way.

2. Lowered Confidence- Confident people succeed. We do. I had to rebuild myself and am lucky I could but not everyone is able to do that with or without help.

3. Depression- This too can feed lowered confidence and can get you bullied. Don’t feel u p to anything because you hurt so much and are sad? People WILL bully you for that. Depression is hard to live with and bullying is a cause. Depression is also painful and often causes people to kill themselves.

4. Lower grades- You do notlearn when afraid, you learn less when stressed. There must be a safe place for people to go to learn. Living without one creates a priority of survival not education. You can’t focus on algebra because you are focused on not sitting wrongly, or the physical threats that bullying can entail. Sometimes people even drop out.

5. Social Isolation- Bullying makes it harder to make friends. Cliques aka human herds are social. While not every autistic is social many are, and this deprives them of the opportunity to make friends, to learn because a bully takes out your friends too. No one wants to endanger themselves for a stranger. Sometimes not for people they know. Bullies are dangerous, predators even.

6. Health issues- Bullied for weight? Well you may just end up anorexic. Bullied with physical violence? You could end up with serious physical trauma that disables you. It can also be BOTH THINGS. Bullying can even cause sexual dysfunction, increase the trauma of having puberty, and living in stress is also just bad for you. Hypertension, heart issues, bad diet, inability to sleep just to name a few.

7. Violent Retaliation- I have written about it before, but I nearly blew up my high school to kill everyone so allthe pain stopped. I also realized this was not healthy and stopped myself. Not everyone has that ability and sometimes these victims make more victims in a violence chain reaction. School shootings, the shooters are often bullied. This isn’t once or twice. Its not “Just Columbine”. Its also not always so clear cut. I became so afraid of bullies and had no safe home and ended up hurting the only friend I made before I was an adult because I didn’t have the ability to think past the fear and she touched my food. Yes I was also abused at home but a lot of bullied kids are, not just the bullies and sometimes those bullies have healthy home lives despite what the Film Industry/TV Industry tropes are.

8. Alchohol and Drug Abuse- Oddly bullies tend to be more prone to drug and alchohol abuse in some studies than their victims but compared to non bullies/bullied people both parties are much more likely to drink. Bullying is not just bad for the victim but creates bad mental hygiene for a life time.

9. Criminal Records- I can vote because my mistake of assaulting my friend came at the right age but not everyone is so lucky to get help and both violent responders to bullying and bullies still have to live with the consequences of their actions and reactions for life. I can’t forget, even with two brain injuries, the realization that I nearly killed my friend. I have to live with that feeling forever. Any time I think of her, it is there. A reformed bully joins me there but often they continue to escalate into other criminal behaviors, as bullying is another word for assault in MANY areas.

10. Missed Opportunities- Bullies and their victims both miss opportunities. Later in life the victim may be successful, needing to hire someone. The bully applies and… I would not hire them if I was in HR. This applies to non work things too. I have forgone games and social outings because an abuser/bully was there. Sometimes I tell the bully/abuser to fuck off, but I am an adult and aware of my power. I am the rare person who despite all of the crap they endured is able to do so. Its not common.

I am I think the sort of person who inspired this false and illogical article. I am strong. I am tough. I kick asses and take names. I push myself and sometimes I can’t get past the bullying. It still hurts me. That isn’t stronger. Stronger would be less of that. If I had not been bullied at school I would have had a refuge. Not having that? I tried to kill myself a few times and failed. I didn’t get found or helped, I just didn’t do it right. I am glad of that but telling me that I am stronger because of this is an insult to my intelligence, common sense, and every autist on the planet. I understand the writer wants to justify their being a bully, but I hope ANYONE with children near them runs, because this isn’t a red flag. This is a sign that reads: I am an abuser. I will hurt you. I will hurt the ones you love. I will forever scar the minds of innocents. I am also not qualified for anything. Not even McDonalds.

No one should be bullied. Autistic children are much more vulnerable, as we still cannot even be guaranteed education, access or care. We are discriminated against at all levels. I have been denied access to medications because of autism, endangering my life. I have been denied access to necessary law enforcement. Autistics are already trained to obey everyone, by ABA which the author supports. We can ill afford more of the same. It is much arder to stand up and say no. A lot of the reason Autistics struggle with these things swings back to being bullied. Bullying is abuse. Calling abuse healthy is assinine. A lot of this post was edited to remove the word fuck and many other unfriendly epithets to the originator of that piece of shit article. I am still cursing in it because frankly, that fucking piece of trash article deserves to be called exactly what it is.

Karen Kabaki Sisto M.S. CCC-SLP I hope you read this. I hope you understand that this paragraph was originally cursing and I hope you learn something. Bullying doesn’t give any perks. Putting the burden of the victim on making it about team work, autism awareness every month, claiming we learn verbal skills when we are terrified of being harmed, grow stronger, gain friends, and a better well being shows me you have NOT looked at the effects of bullying at all and are either high or stupid. Self Esteem is often low in autistic children because of bullying. Please, quit your job. This is not said lightly but quit your job. You don’t belong near vulnerable people.

I will be blogging extensively about your article and I hope you get this on your “other folder.” I also hope you read my article. As an autistic adult I am more qualified than you are to deal with autism and you have proven to be the least qualified hack  since Jenny McCarthy. For your education here is a link from me to you, about the risks associated with bullying. I didn’t consult it, because I know them by living them.

Why Do People Kill Themselves? Answers on Suicide and Chronic Illness. (Trigger Warning)

In the wake of loss, that moment when the pain sails in and your heart shatters it is impossible to be ready to write, think, or even feel. Amber wraps around you and the world is crushing with the weuight of the agony. It is a detrimental tether that weighs us down to the dead. When the loss is a suicide iti s easy to be dragged  under, especially when your own pain, like the person you lost is endless. I have written many times about suicide. I have said over and over that I want you to be greedy and sieze life. Live despite the pain. I also know this is not easy. I have not hidden the fact that when I wake up I want to die. My dreams are not refuges from this but often are nightmares where the fear clings to me for days, little needles and waves of it running through me constantly. I am very tired. if this is all I can see, I am in danger of losing myself. Even thinking on it to write that I have tears burning my eyes. More pain as I am allergic to my own tears.

There is a reason why when someone close to you kills themself it becomes a greater likelihood that you will follow. It triggers a chain of pain awareness that can be suffocating. I am not really ready to write this but I live by certain rules, which are important to me. My rituals of evading consistent patterns despite how uncomfortable that is for me as an autist who needs habit, my firm morality about life and death. I do not think suicide is wrong but I also am a proud supporter of the Not Dead Yet Movement, because it is also not the solution that should be tried first, second, or even remotely before all options are exhausted. All options literally. Even if I had been a quadruplegic instead of a paraplegic I think I would feel the same.

In the last six months with in the Ehlers Danlos Syndrome community there has been a growing number of suicides, a recent one closer to the cusp of my soul than some of the others has me writing this. There have also been daily cries for help. I cannot always help but I try. Just as sometimes I have to ask friends to help me. The challenge of being chronically ill with a degenerative disorder that has symptoms described as “torterous pain” which is not a strong enough description and knowing that pain is only going to get worse is hope dies quickly. There is never enough energy, time, and even turning on or off a light, typing a word, eating or basic needs can fail to be met because you dislocate, rip, or even have your insides suddenly shred. Then the world only tolerates visible disabilities. As if somehow my wheelchair being in use instead of a regular chair changes the perception of what it is. Without crutches, canes, walkers and wheelchairs most disabilities ARE invisible. So there is a decided lack of empathy. A lot of people with chronic illnesses rage against cancer patients for a time. I am guilty of this too. Sometimes I get so frustrated because the world is coddling them. Then I remember that it is RIGHT to coddle sick people. I am envious because there is, outside of the world I clawed and carved and fought to create, no room for someone with a non curable, intreatable illness that will not kill you quickly. Chronic illness is a slow death.

I think that last paragraph is the most depressing thing I have ever written, and I write about horrible things often. The words cannot convey the depth of agony in the flesh. Sometimes I have to tell people I will suddenly be unavailable because my spine feels like it has fireants in it. I leave out that the fireants are biting each nerve fiber. That the bones are grinding. That the muscles are twisting in on themselves and I just cannot move anymore. Sometimes I vanish for allergic reactions. Those are painful too. My tongue is swollen to the point of rupture. A few places split. Hives are added to that. In order to eat I have to coat my tongue with orajel, which has diminished effect on someone like me. Ten minutes of numbness to eat. Sometimes the numbness never comes, just a terrible burning sensation. Sometimes I cannot communicate at all or eat. I go  hungry a lot, which only increases the pain. My jaw dislocates and slips around. I have cavities that are very visible and cannot find a dentist who can treat me. I suppose they call COULD treat me but they won’t. I am too fragile and complex. I look at the people with my conditions, many are not as broken as I am physically but many also are. Some survived t hings like I h ave which would leave wounds that never heal regardless of mutant collagen. I look at the women and men with these disorders who  have children. I do not wonder that at times we lose people. The struggle of my own body is enough, adding in children no matter how well loved creates a new set of challenges. Many parents feel guilt when they realize their children are suffering. Sometimes the children think that it is their fault their parents hurt too. This cannot be helped, but it too takes a toll. No parent or child wants to think they have hurt the other. With my experiences I do qualify that not all people who give genetic material to form a child are parents either. A parent loves and cares for their child at all costs. The issue there with something like Ehlers Danlos is that all costs can be deadly from the disorder alone, and the psychological toll.

Chronic illness also begets isolation. The internet set me free, I log into it and connect with people. I feel fufilled. Not everyone can achieve the same connected feeling online as offline however. Knowing I cannot go out I adapted my social world long before I knew why. I am lucky that a primal, formative need allows this for me. My autism perhaps saves me of the worst part of chronic illness. Isolation. Loneliness. People stop asking you to go and do things if you flake out. People presume it isn’t as  bad as it looks because the media and the culture that we live in hide illness, so if you do not look like a mutant freak of nature, wear a body cast, or otherwise seem sick you just are a faker. I  have had that many times. I have had people physically assault me to try and prove I was able bodied. I have had people threaten me, I  have had people give awards for achievements to everyone I worked with and leave me out of it even when I do just as much as they do,  because I am not socially acceptable by right of invisible illnesses. That was before I could not hide it. Even now I have people tell me when I am out to get up and walk, then I wouldn’t be fat. It doesn’t matter that I am ridiculously swollen and not actually as fat as I look. I am still fat therefore I must be faking. Television shows also only allow for disabled people to be the bad guy. We are the villains. We are the reason the world is such shit. We are the reason why taxes are too high and people cannot afford food. Not the actual people who  have sway and influence there. Nope, the disabled are at fault.

Some of us are also survivors of abuse, where our disability has made it impossible to escape. I lived that. I see it often in these groups and quite often the people who we lose are survivors of abuse or victims of on going abuse. Yes the thin line of victim and survivor does seem to be mere chronology. Survivor does not mean healed, over it, or never effected. I am sitting in t he start of what I call the Novembers. My annual run with debilitating PTSD. This year is already worse than the last few. I know why. I also cannot fix why today. I must just survive it anyway. Pain is my oldest companion. It is something I know inside and out. I can read people’s pain even if I am not always good with body language. I can tell a great deal about health just by watching people. I know when someone is faking pain, when they are like me and can take the pain. Pain changes how you breathe, sit and move. It breaks you. I have been broken.

This is why I reach out to people. I am always available if awake for emergency help. With all of the darkness I just shared it is a wonder no doubt that I am alive. I do wonder at this sometimes. Why did i get so lucky as to survive the horrors of my life? I fought for it. Fighting is not always simple, it is never easy, and sometimes the battle is quiet. Sometimes it is impossible to speak, so ou reach out without saying what is wrong. Sometimes you can go to people in a support group or trusted system and say, “I need help.” Sometimes help is not coming. I know that a lot of people with suicidal issues are afraid to ask for help due to the always available recent fuck ups by police in which they react wrongly to someone calling for help and kill them. This happens a lot just for being disabled. The terror is reasonable. Wanting to survive is not always enough to beat out being suicidal. Talking isn’t always enough. Trying matters however. I can understand why my friend killed herself all day. It does not ease her pain or mine.

What I talk to people about when they are suicidal are short term answers. Things that can relieve the pain enough so that they can survive. I cannot fix their pain but I can listen, I can problem solve, and I try to remind them to be selfish and greedy for life. I posted this as a facebook status after the most recent suicide. “I am greedy, I want people to be fulfilled and happy. I want to live long enough to see the changes I have pushed for in the world come through and the same for other advocates. I want to know what happens next int he story of human history. Sometimes that is ALL that gets me to push past the moments of pain. Be greedy with your reasons to live. Revel in them. Life is hard and for some of us pain is never going anywhere but that only makes me treasure what I can do more. All the no, can’t, pain, badness and horror makes me know just how worthy I am when Sprite cuddles me, when I get to go and do something simple to otherrs and fantastic. No one lives without pain. No one.” That is the core response for me to suicidal people. I am not that direct, I work it in slowly.

The first thing to do when someone asks for help is to listen, making sure they know you hear them. I do not contradict their pain, I do not tell them the very stupid and often damaging and deadly “That is a final solution to a temporary problem.” My pain is not temporary. I will have, when I die, lived every breath of my life in utter agony. SO that statement is condescending and stupid. It has no room in a real discussion. I try to not say anything that can be taken as disregard, dismissive. The second thing I do is I ask them what they have tried to solve the problem, if this is something that can be solved. If it cannot be solved then I skip ahead and look at reasons why enduring the agony is worth it. Life goals, dreams, children, pets. Small things add up. Often there relief in just being heard. Just knowing someone else hears you and understands you. That you are not crazy like that last doctor said, that the pain is not a fiction but dislocations fucking hurt. Why doctors seem to not grasp this over all confuses me given that if someone did not have a condition that caused constant dislocations they would grasp, in a heartbeat, that it is agonizing.

I cannot make this condition anything it isn’t. There is no real hope at this point for new treatments, for pain relief. Sometimes people have a history of addiction so even pain management medicines to lower the pain to survivable levels, which is what pain management really is not curing it or fixing it or removing it entirely, are impossible. We lose those people more often than those who get medical care that include pain treatment. The reality is that pain itself is toxic, it causes the release of hormones and damaging chemicals that in short term exposure are okay and help you survive but in long term toxify you. Most of the people who kill themselves in this world are not having needs met. Sometimes the needs are harder to grasp. The “perfect” honor student who must always perform and get good grades may not have a need met that is easily identified. Likely their need is help in understanding they do not have to be perfect. It could be other things. The pain patient without access to basic needs. The homeless person who just can’t figure out how to keep a house because their brain, body and society do not let them adapt and they do not know how to ask for help. The business man who fails at something and has a combination of stress so he just gives up. Except no one gives up slowly. The human brain is built to survive, it is a primal impulse. The amount of pain required to over ride our primal nature is significant. No one dies without a reason.

Why do people die? Why do people kill themselves? I suppose having the answers to these questions means I have an advantage over people who think there is no answer. There is no great unknown with death. I do not fear it. I am also not ready for it. People die because immortality would be an endless agony, our bodies wear out. Our minds wear out. People die so that life has meaning. If we never died we would have no reason to try. People kill themselves because of pain. The pain is not inherently understood by anyone else, as far as the victim sees. Yes victim. Be it of their own mind, bullying, disease… they are a victim of pain. The pain overrides hope. Nothing can fix it. Eternity is that moment of worst agony and you see it never ending. So you give in, you kill yourself because that pain is unbearable and it is never going away. Ever. The only way to end it is to die. It may hurt for a moment, just a bit more, but if you kill yourself it ends. Well…w e think it does. It may not. The pain also can get better with help. I have improved with therapy on the mental health things like PTSD. With pain meds that at least let me take a breath. The pain is still there but I have it managed, conquered even most days.

Pain blinds you to the reasons you want to fight. I am greedy. I have dreams and goals. I want to write my book, I want to sing. I want to out live some people. I want to be alive long enough to see an active gene therapy to treat my disorder for the next generation. We need to be alive to fight for things. I want to be alive to see the world tomorrow. Every day I plant seeds of change, growth, renewal. Every day I do something that may change the world. I do not know what change will occur, I can try and mold and shape it but if I am dead I will never know. Somedays that is all that pulls me out of pain. It has been two years and six months since I last really had to fight myself to stay alive. I count the days like an alcoholic in recovery might, because it matters. It has been seven yaers since I last gave in to the urge to binge or purge. It has been four years since I last tried to kill myself. It has been three years since I last hurt myself just to feel something else, to trip the endorphins that make pain better. I may slip again in the future. I may not. I  have to live and be greedy for life to get there.

People who survive a car accident, near death experience, cancer and treatable things always say they suddenly see life as something of value that is meant to be lived and savored. It is always presented in the most cliche manner. I find those stories grating because the implication is you must have beaten whatever is wrong in order to be greedy. You can read this and just care for someone with horrid things that they fight and still be greedy. There is no prerequisite to be hungry for life outside of being alive. So be alive. Be greedy. Be hungry. Curl up into the fetal position, scream, cry, then get up and fight for those goals. If you are dead you never achieve them. They do not have to be goals like winning a Nobel Prize. They can be goals as simple as seeing the next Avengers movie. Set something further down the timeline, small steps that are manageable to get there. One single step is all you need. Then after that worry about the next step. You may look up and realize you have achieved more than you ever dreamed possible. I do that every day.

Here are some resources for you if you need help:
Call the National Suicide Prevention Lifeline at 1-800-273-8255 (TTY:1-800-799-4TTY)
(In Australia, call Lifeline Australia at telephone: 13 11 14
Teenagers, call Covenant House NineLine, 1-800-999-9999
You should also be able to find a crisis hotline near you via googling or looking in the front of your phone book.
Ask for help in a support group. Facebook has a ton of support groups be they for things like Ehlers Danlos Syndrome or suicide crisis prevention, many other social networking sites do as well.

Additional resources:
http://www.metanoia.org/suicide/
http://www.suicidepreventionlifeline.org/

The Missing

There are people who you will never forget. This is usually said about the momentary brush with that superstar, your parents, your family, and people who impact you. It is rarely said about victims, shadows and the fringes of society. Yet for me those people are ones I never forget.

Recently I had a day that was tinged with those frayed edges that politicians blame for all of the ills of the world. A woman who was homeless and most likely due to her mental illness threatening in one voice to kill  herself, the other voice begging for help. I saw her. I  heard her and I called for people who could help her. I will never stop wondering what the outcome for her was. I like to think she ended up in one of the rehab programs. Maybe she will end up a neighbor. I have seen her before but never close enough to hear her pleas. I was laying down to sleep, disoriented from the sort of nap that only comes with Chronic Illness. Exhaustion forced it and it leaves you groggy and hung over. I woke up from that fog as someone screamed. A woman in the night shouting for her god to save her. I do not know if that god heard her but I did. The scream was cut off, a male voice, then a cry revealing she had been stabbed. I called the police. I listened, fearful for her. 911 put me on hold, which is always a nightmarish sensation. Those seconds mattered. Tick tick tick, I felt her life ending. Luckily they picked up and with in a half an hour, which could be fatal still, she was in an ambulance that wailed into the night carrying her to what I hope is freedom from her terror.

I will always think of these women and wonder. I will also always think of the homelessman who I used to feed when I could and often sent Maxine out with water for him. I gave one of my waterbottles over so he could stay hydrated. He disappeared after turning up burned from the sun, obviously on the edge of death. This was before the hottest days.

I do not know who all reads this blog, which is why I am writing this. I have been the unseen fringe, the homeless, the abused, the victim, bleeding, starving dying. People did help me. I will always think of them too. This is a once a day thing. I can only hope that they help others. I think they will. So who is it you think of? Who do you remember? Who is in the fringe? Are they missing? Are you missing to people?

I know I am missing for some lives, but I must be to survive. I will always wonder about the stories of those I see and I do wonder about those who I have disappaered on. It is what must be done at times. So I suppose this is my hello, a goodbye that was never said and a pondering on the future. I could have been those women, after all. Someday they may end up reading this. I heard you and saw you, you matter. I keep saying these words to people because everyone needs them. Make someone unseen seen, show them they are alive and matter.

Environmental Adaptation: EDS, Pain, and Auroras.

I have been thinking a lot about the side effects of being stuck in bed, in the house, and limited activity outside. This is not new, though it is more acute with the recent surgery and my body being slow to get over it. My nature is to push and rush, and I am trying a new route. Not forcing myself to deal with extra pain by rushing my body. Yet I am not depressed, which is something that surprises me when it creeps into my subconscious. I am happy. So what has lead to this?

First and foremost proper pain management. I see a lot of depression tied in with hurting. I still have days, like today, when I cannot move because the agony in my body is so bad that not even morphine helps. Which is shitty. It has been raining and so I have been writhing. Pain management for me entails the way my bed is made, there is a lot of cushion before the pressure pad, which softens the mattress. There are pillows to support my joints. The bed adjusts and positions me so I can actually get comfortable. I sleep in this bed, not a few disjointed hours with four when I give up. Six hours with two interruptions. That sounds like terrible sleep to most people but it is the best sleep of my life. I was born in pain, so the relief i find now has changed a great deal of my experience.

Second is environment. I have access to a beautiful light show, this is recent but it is not my first attempt at environmental tuning. My crystal lotus with the LEDs that rotate color through projects an aurora borealis on my cieling. I adjusted how much light and how much of the room is filled by choosing where this sets. The lampshade catches eighty percent of the light so i can leave it going while I sleep. I sometimes turn off the lights, remove my glasses and just watch the colors. It is then when I let my mind run free into a story. Not always the one of my novel, sometimes it is just a land of color and beauty. Sometimes I am a butterfly transitioning from catepillar. SOmetimes I go on a journey through the Celtic Wheel like many legends of Arther have. I have been hunting for a non noisy home planetarium machine to buy, once I find the right one via research it will be something to save for. This combined with my aurora can create a new environment. The high end ones, which is what I will strive for, allow you to change what kind of star field and view you project. I have a plastic moon, which is not sufficient quality to recommend as this is my third and it too has broken, that rotates through the moon cycle. I can feel outside without going outside. This means setting up access to light controls via my remote plugs. I control my internet to reset my modem, my bedroom light, and a few other things which need on and off from my bed. I tried a few brands before finding one that held up to my abuse (dropping, oh so much dropping) with the Etekcity brand. A bit of velcro and it is stuck to my wall by my bed, where I can comfortably reach it and poke the switch.

Third is entertainment. I only have a tablet and a desktop. I am on bedrest. SO my carer and I put my monitor on a hospital bed table, set up the tablet beside that and the tower on the floor. This required moving my uninterrupted powersupply, ditching the monitor that was bigger and also dying anyway, no external hard drives, a wireless trackball and keyboard… annnd it works. It works well enough that I can watch movies, write, and function as I would at my desk. This cuts down on feeling trapped. I can watch DVDs, stream hulu, netflix or other services. I can run facebook. This is not flawless as my PC has no wifi built in, not an issue for the living room… the old wifi dongle I have is over ten yaers old and cuts out a lot. This also isn’t as big a deal except for facebook anyway. I turn off the net to write, I mostly run hulu and netflix on my tablet. A laptop is more ideal but disability is often tied in to poverty so I must adapt with what I  have.

Fourth is food. I eat in bed now, which is a terrible thing to imagine for most people. I have a pillow for some dishes, a tray for others and still use the hospital table as there IS enough room for a monitor, speakers, tablet and medications on thatthing and my bowls. My bowls andplates are hybrids of each other, creating the right surface. Using a bowl cuts on spillage in bed too. Sometimes there are accidents, but that is true everywhere.

I have built a modular world inside my home, where sensory friendly moments dominate the invasive terrible outside world’s loud and painful ones. The lighting, the entertainment and even the music is tailored to keep me happy. The internet is of course a huge reason this works as is my perpetual creation with in my mindspace. I am dependant on my carer for this to work but it is still a matter of personal need.

I still have pain. I still must log it, track it, and treat it. I still have moments of frustration at my limitations. I want to shower but it is too dangerous for me to do so right now. Its been over a week of just sponge baths. I lament for it. I also know that it is better to wait. I am still clean, I just want to get a better type of clean. I still struggle to eat. I still must move to go to the restroom. Sometimes I still get sick and must stumble forth to find a place to vomit. There is no perfect setting or world but I can give myself beauty, enjoyment and I suspect most people can manage this too. I needed help to perfect what I wanted to do but this concept is not newly stumbled upon. For over ten years I have refused to live in an environment that hurts me. My system is always being tweaked as it is imperfect, but it gives me what I need to create and function.

This post is dedicated to people in pain, people with sorrow, people who have no idea what to do to make it better. It is dedicated to people learning how to heal. People like me. People like you. We must adapt to survive but not all adaptations are born out of logic. It isn’t logical to realize changing your walls to stars and trees is helpful. If it was, this would be a built in feature of every home. I am simply sharing my own adaptations. I learn from others who do the same.

Reclaiming the Pain Olympics

The Pain Olympics. This is a phrase that creeps up on message board support groups, it is one I have used myself. It is always negative. I woke up wondering why. When people seem to compete to have the most agony why do we look to the Olympics? This ignores the history of the Olympics and what actually occurs to train and prepare for competition. If anything the Pain Olympics should be a positive thing. Olympians are driven people, they put effort into their chosen sport from a small age when most have simpler ambitions. Most of them come from privileged homes but not all. To be an Olympian is to be a pinnacle of health. So to be a Pain Olympian is to be… it is hardly to be a pinnacle of someone struggling with pain in it’s current context. Something we must change.

The fact that people seem to compete for pain on the surface is also illogical, however that is not what is really occuring. The people competing are stuck in a space mentally where they cannot empathize or recieve empathy. Everyone has these moments. They seem most common amid teenagers struggling with the difficult transition from childhood to adulthood. “No one understands!” This feeling echoes through you at times, this social doubt choosing your most vulnerable moments to spring up. Often people are unaware this is even what is going on. They just know they hurt, and they feel isolated by that pain. They feel so alone and as if this pain cannot be tolerated, but helpless as to how to proceed. This is what the current pain Olympics looks like. It is not glorious. If anything it is an agonizing place to be, and while people do need to be reminded that they are not alone perhaps in using this term the helpers are being remiss. I know I have been. I am not always the best at showing my compassion. I am at times too direct, too blunt and this may be a moment where this is true. There is no need to shame people who are in such a state of mind. Saying you understand fails to work but there have to be other ways to say, “You are in pain, you aren’t the only one. I cannot fix your pain but I can listen. I can understand. You don’t have to suffer without compassion in your life just because you hurt or just because your disease is rare. I know it is scary and today is especially bad, but I am here.” In fact those words work just fine.

I have not participated in the traditional pain Olympics in a very long time. Escaping them was a feat in and of itself. It requires rigerous mental training. Every day I must approach my pain. I canot hide from it, run from it, pretend it is not there or otherwise neglect myself. I must try to stay at my fittest, eating the best possible food… which often is bacon and cheese and potato something because that is what I can get into me that my body won’t reject but that nutrition is still far above starvation and isn’t wholly bad for you. To face my pain I did fight for pain management too, so there is relief. My set schedule of medications keeps me from breaking down most of the time. I still have break through pain and when I wake up there are dark moments. It hurts to breathe, and often I wake up choking because without pain medication the act of breathing is a nightmarish thing. So I push on through and persevere.

Pain Olympians I hereby reclaim this word. A pain Olympian is someone who despite the pain gets out of bed if possible, brushes their hair if they have it, and does something to nourish their body. IF you cannot get out of bed or should not, then staying in bed too is a victory. It is something I am personally terrible at. Bedrest is extremely difficult, even in our modern era of computers and constant access to entertainment. A Pain Olympian is someone who does what they must to survive despite the pain. That is the Bronze Medal. The silver medalist does all of the above, then also does something pleasurable. Maybe you eat some chocolate, maybe you shower, maybe you go to bed with some spoons remaining. A gold medalist is someone who does all of the above, despite the pain. This is not a good day sort of award. You can only get the gold on your worst days. The rest are training for days like this, building your tolerance. The gold day is when you live. You breathe. You stay alive through the pain. Yes this means many days Silver is the best we can achieve, but that is a beautiful thing. There are days without pain medication, some people do not have any. I have gone many years without it between years where I do have that luxury.

The pain Olympics should be something every chronic pain sufferer participates in mentally this way. Personal goals they set themselves. Olympians give up family, friends, activities outside their sport. Pain Olympians and chronic illness sufferers already lost most of those things. The weak friendships that could not subsist without constant grooming are gone. Marriages are often shattered. Both to me sound lonely. Both to me sound hard. So I have reclaimed the Pain Olympics for what it really should be. It should be something we are proud to survive, it is a grueling, defeating thing, and pain takes so much. I cannot give actual gold medals to people who survive but they are there. I started seeing my scars as signs of survival a long time ago, so the gold medal is just inside of them. They are the ribbons to hold it to me.

the biggest thing to know about pain is everyone feels it in measure. I have written often that pain is a gas which takes up every available space it is given. Pain medication, meditation, and mental fortitude as well as tolerance to pain make it far easier to contain. Years of the Pain Olympics have made me aware of my strength. I already was strong, so I cannot claim they made me stronger. They made me more aware of my weak points. Which can make someone feel stronger but can also make them feel weaker. The Pain Olympics are not about defeat. If you are there, then you already survived something. Being born, being a child, being a teenager, being an adult. Perhaps you are still a child. Every day we are alive is something we survived. Every day. This is why I celebrate my birthday and always will. It is my victory celebration for another year. Someday I will die, but not for a very long time. I refuse to go peacefully or quietly, nor will I go because of the pain.

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