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.