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.

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:

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.

Serial Killers, Survival, and Vulnerability (PTSD trigger warning)

I have known more killers than decent people. this is a thing that haunts me daily. I know what  it is to be hunted. This has dogged my thoughts for some time. I think it does every survivor. My father was a serial killer. My husband. My uncle a serial rapist. My mother complicit in the crimes of my father. My grandmother potentially was a Black Widow killing her husbands, I do not know enough of what she spoke of to be sure. She lied a lot, she was confused. She admitted a past history with drugs and being committed once for her delusions. She lied in the same manner as my father. I hated them for it. I think I still might but mostly with my family I am a numb cold space or a raw wound. There is nothing to love, except the fantasy of what I wanted them to be.

I think a lot of people have these fantasy parents. Loving them more. Loving them equally to their siblings. Not all fantasies are like mine, where the fantasy is still a demented reflection of sitcoms and mistaken love. Fantasies that contained no joy. i did not know joy yet. Yet. I think most birthdays make me retrospective. I suspect this is human nature. We have been alive a span, perhaps it comes from survival and the need to understand what we are doing right. I am very good at survival, which is why I am now thirty.

The predators in my life have not all been flesh and blood. I once drew the attention of a serial killer who mistook me for prey. He sat down on a park bench beside me and my friend, I lied about our names out of instinct. I thought something was wrong. He scared me. For a long time my escape was attributed by myself and those that I knew to being psychic. I am not psychic. I am astute, despite brain damage my brain functions at ahigh capacity. I have an eidetic memory, which despite how TV shows is not all that perfect. I am smart. I also am experienced with monsters. At this time my experiences with peace were limited, though I had not yet fully trespassed into darkness. I do not know what I read in him that told me he was hunting but I knew. So we ran for our lives.

Our run was not clean. The way out was not truly running alone. It required we swim through sewage. It required that we ruin our winter coats consigning me to a cold winter. It required the revelation we disobeyed our parents. She was more terrified of that at first, until she noticed I was not wrong and the hunter followed his prey. I will never forget the white truck, the partial liscence plate remains though I no longer can transcribe the numbers. His smell. HIs breath. It is etched into my memory. My friend and I looked alike. Pale, big eyes, matches for his victims though younger. The youngest of his hunted that they know of. He knew our names, despite my lying. I introduced her as Gabrielle and myself as Barbara. Something trite, Silly. Instinct. Lie. My brain screamed it so I did without hesitation and without the usual queasiness that I associate with lies. The irony of my preference for writing fiction, explained easily with that being a story and no one being required to believe it, with that sickness with a lie does not escape me. I think that this is also why I write about what has transpired in my life, what I think as a result and study myself in order to understand a way to cope. It has gone beyond that many times. My need to think it through and comprehend has turned out to reflect in other survivors. Now I bond with people. Now I know that this is strength. Just as that day without the ability to swim I found it.

We ran. Fast. I dislocated my hip running, it never was the same. The first pelvic dislocation. I did not let it stop me, it hurt. We ran past the police station because I was primal. I wasn ot thought. I was simply a gazelle surviving. My friend did not think. She was too frightened that he was driving after us, chasing us in a car. This is why I went thee route I did. His vehicle in that small town was not known to me. This is the only part of small towns I like. Strange vehicles are known. This exists where I live now too, it is such a closed off area. Small towns and the War Zone, the ghetto, the gang area. Whatever you call it. Isolation exists here just as there. There is less crime here. I find that ironic. So we ran. One of our friends, more hers than mine as was true of them all I was simply the smart kid they let help them with homework in exchange for friendship or other things along that line, was the daughter of the chief of police. I knew her house was safe. I had run there before when afraid. Her father believed me. He was the first authority figure to believe me on bad things. I was raped by a schoolmate, emulating his father. I showered, which was what my mother taught me to do. So proof was lost. I assaulted that boy, I took bloody vengeance. I never have regretted that. No charges were pressed, even after I ended up stabbing the kid with a fork in the cafeteria. He believed me. He told me he did. Realizing how pivitol not being believed is, that is why this is in my head. That stabbing was weeks before this occured so I knew it was safe and I ran. He would have caught us if not for the location of the police station and his house. He was very close before he saw the sign.

It was raining. It was august. The man knew my birthday. He told me he knew. Just as he knew my name. He knew my address. I am lucky in that home never felt safe. I did not feel safe in a home until where I am now. Safe was so foreign that I did not even know how to define what I felt with that primal knowledge where to go. If home had felt safe or my friend’s home had felt safe, which it did not due to her abusers, who forbade our contact because I knew with them too. I told them so. I did this to protect myself during a sleepover, other abusers I kept silent on. I see them in many places. This too is for survival. If you can identify the predators they cannot hunt you. I woke up with her mother’s live in boyfriend looming over me, so I hurt him and showed him my power. I was just big enough. He limps still, I dislocated his knee cap. Though that one may be dead from his drug use, I damaged him permanently and he feared me. It was the weapon I knew how to use. A “gift”. The man hunting us that day was one I knew I could not take.

We made it to the house. She was too afraid to even speak. I told my friend who was home alone to call her dad. Not nine one one. She did. I told them everything, down to his partial plate number. They found his truck. It was a work truck for a farm he had found a job at. Just passing through. I gave them a description. They brought in photos. I pointed him out. They never found him. He found himself. I do not remember if it was months or weeks but the next time I saw his face was when he was on the news. He lived in Mexico. He hunted in the US up and down railway lines both active and defunct. He trailed right through and we were the fit for what he hunted. He knew more about me than he did her. I was his prey. I was vulnerable at that time, exceptionally so. Predators prey on vulnerability. There is nothing a person can do about being vulnerable to a point. There are small things you can do to offset that but there is no “cure” for it. This is why I know escrima, carry a taser, used to carry pepperspray before it became too much for me to handle, and do not go out alone. Self defense courses are vital. Doing things to feel confident is vital. Yet truly vulnerable people cannot stop being that. A part of me will always be vulnerable. I have accepted this. I am now accepting that it is okay for me to have escaped things like this, I have felt guilty for a long time about those who did not. I used to dream about this man’s other victims. I have not thought about him in a very long time. I cannot quantify the time.

I have survived. I did tell my mother that the man on the TV was the man who hunted me and my friend. We never went to trial to speak. I am not listed in his wikipedia page. I checked. I do not know if I am a known quantifier there. For that I am relieved. This man crossed countries to kill. I survived him. Perhaps I am not the only one after all. He is dead. He has been since 2006. I did not know that until tonight either. I do remember talking to the FBI. I do remember this being recorded. I do not know if they had mercy upon me or understood that stress could break me.

Soon I will begin writing a fictional story. I am ready. My body not so much but my mind has begun to spin a tale. It is dark. Just as my life has been. You write what you know. I know survival.

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