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.