“In my view, there is nothing more vicious and outrageous than the abuse, exploitation and harm of the most vulnerable members of our society”The Long Darkness is always with me.
It comes into every life.
All I have endured, escaped and faced, and those acts which reduced part of me I had believed myself free of. We all do, those parts of our lives, our selves, memories and feelings we don’t talk about.
I was wrong. That is the long darkness of chronic diseases, terminal diseases, disabilities: never being able to escape that which I thought already escaped.
It isn’t about the dying. Or the losses, loss after loss.
I have known and watched three people who have sat and denied treatment rather than enter that darkness. They died.
It isn’t about the pain, though I just spent two days in a fever and locked state, lying with one eye open in the swirling hell of pain each second held. But it isn’t the pain.
The illness brings back those parts of my life that brought shame, self-loathing, and emotional pain to difficult to even remember and live mentally in that place. But you are not asked to live there, you are sent. At times, and sometimes a progression of being helpless and watch those experiences bite away at your life, consuming you, until you live in the darkness. I didn’t understand those who died saying ‘no’. But I understand now.
You either say 'no' or decide what one is willing to do, to endure, to be shamed to yourself and others, in order to survive. As long as society acts how it does, living with a chronic or terminal disease/disability then there will be not just ‘a darkness’ but your darkness.
What do you fear?
Junior High? High School?
I have been bullied by careworkers, by managers, by doctors, and every time knowing there is no place to appeal, the college of physicians complaint person said about a human rights violation, “It’s not they left an instrument or towel in you.” No, they humiliated me and enjoyed, they told me they were doing this because I was different, because I questioned, because I talked back, or just the rightous anger of demonizing or the sly smile of enjoyment. And so, like junior high or high school, the bullying comes back.
For those of the Trevor Project, the ‘It gets better’ projects: sometimes it doesn’t. So if you want to change society, change both ends.
My partner and I have both experienced systematic and regular discrimination. Not abstract discrimination but discrimination that risks my health, my life, whether that is putting me in an ambulance and refusing to take me to the hospital, but catch up on paperwork, using my body as a table, or the care worker telling me that there are no such things as ‘hate crimes’ in the apartment the manager tried to drive us from because ‘married couple’ advertised didn’t mean US.
Now I need protection, for when I am the most helpless? I know enough to say ‘caregiver’ when they ask about Linda not 'spouse', like back a few years when the attacks on us, our car, our apartment, assault on us both, more and more on me, until the police had to protect. When you are circled in your parked car by drunks lads screaming insults, when people stop you to hit you for existing, and you never see their face, then you believe in hate crimes. So when Linda isn’t allowed to the ER bed with a marriage certificate in one hand and ‘legal authority’ in the other, it isn’t a surprise.
“Monday: my money was taken.When it hurts so bad, when I am scared, when Linda and I disagree and I worry what will happen when she leaves. Because everyone leaves. Many People say ‘love’ and ‘stay’ but new jobs, boyfriends/girlfriends, lives move on and at the end, it is hard to see this 'love' when thing are hard (they are hard now). Love is tangible. It is the hand I hold when I cannot see but am trying to not scream. It is the torso I lean against when struggling to breathe. It is not passive, it is active, seeking ways to care, to protect, to give hope.
Tuesday: names called.
Wednesday: my uniform torn.
Thursday: my body pouring with blood.
Friday: it's ended.
Saturday: freedom.
The final diary pages of 13-year-old Vijay Singh. He was found hanging from the banister rail at his home on Sunday.”
For the Christians: “If anyone says, "I love God," yet hates his brother, he is a liar. For anyone who does not love his (fellow human), whom he has seen, cannot love God, whom he has not seen”I know there is opposition still organizationally, more happened on Friday, and Wednesday before that. I try to fight but I can’t overcome the fatigue. Then the pain when someone I care about writes, “Oh, you still wrote me, got a postcard! Golly, still here?” A reduction of effort of living and reaching out to amused surprise, an afterthought. Yeah still here, where are you? I know that the humiliation from junior and high school will continue, the endless days when there is no friend and no teacher who notices, or cares.
From the Holy Qur’an: “And what will explain to you what the steep path is? It is the freeing of a (slave) from bondage; or the giving of food in a day of famine to an orphan relative, or to a needy in distress” Chapter 90, Verses 12-17
“To wake up each day knowing that you have to go to school, knowing there's no way of avoiding it, knowing that the moment you set out for school the bullies are there, waiting for you to arrive, waiting to call you names, to tease you, torment you, humiliate and mock you, embarrass you in front of friends, push you, punch you, slap you, pinch you, spit on you, kick you, and ... you daren't think about the rest, or the possible consequences.” (From Bullyside)The very people who decide how much care you get are the very people who haven’t experienced what you are going through. They don’t judge your illness, they judge YOU.
Recognize below, these attitudes in a doctor, this medical insurance ‘service consultant’, this care manager, this facility care coordinator?
Need for absolute Power, Control, Domination and Subjugation.
That’s from a book on Sociopaths and Bullies.
Disability bullying includes behaviours such as: leaving someone out or treating them badly because of a disability, making someone feel uncomfortable because of a disability, or making comments or jokes to hurt someone with a disability.
Bullying is a form of aggression used from a position of power
Advantage in size, age, strength, intelligence, (or perceived authority), .
Advantage in social status with peers (being excluded, left out)
Knowledge of another's vulnerability and using that knowledge to cause distress.
Membership in a dominant group in society and using that power against members of a less dominant group in the forms of racism, sexism, homophobia, and classicism.
If you have a disability and don’t recognize each of those, then you are a fortunate individual. Perhaps you think it just me, that I have some ‘complex’, or a 'issue': there is the thread from allnurses about the academic journal article on doctors as bullies. The independent Joint Committee studied 1,500 hospitals and issued a safety alert on bullying doctors: “Outbursts and condescending language threaten patient safety”. A study on elder and disabled abuse found females most likely targets of abuse including emotional abuse and ‘passive neglect’. The numbers of abuse doubled in the 10 years between studies. So me, and..the couple hundred thousands in various studies.
“The tongue like a sharp knife... Kills without drawing blood.”
Buddha
When you are judged for having your disease, particularly for invisible and pain illnesses, being treated like it is a choice from relatives to doctors is common. Facing the blame, the accusations and the guilt wears a person out. I know, listening to people talk about someone with extreme depression on how ‘They just don’t try’, ‘They don’t stick with things.’, 'If they just gave it their all", the comments about CFS/ME, and fibro, “It is so hard to schedule anything with you, there is always some (quotes are used here with hands) ‘sickness’”, “Oh you are tired? Well I get tired too taking care of a family.” Lashing out during a bad day relieves stress for five minutes for an able bodied person and is a sentence remembered for the next YEARS by the person on the receiving end.
Sticks and stones I can endure, but words have always hurt us. Always
Over 4,200 children in the UK in one year attempted suicide. Abuse, sexual abuse accounts for 1/3rd according to one study and 47% due to bullying from a study of an anti-bullying charity. One child attempts suicide every 30 minutes. It is the number 1 cause of death for those 14-18.
Hearing those numbers the Health Minister said, “'Having good mental health enables young people to make the most of their opportunities.’I howl inside when a Health minister implies children trying to die is some sort of culling of the healthy from the unfit. Yes, running from people trying to throw you on a train track is an 'opportunity'! I did my fair share of running up and down apartment projects in LA.
Now, with the vascular dementia I have I have days where I am very literal. Literal. “Let’s fly out of here!” gets me looking for helicopters. While I react, I can’t help it. I know it is part of the disease. I try but I can’t help it. But it is the same face, same tone as the person who a few years ago could help it. So when I react, it is easy to forget and react back (and then I react). It is only a matter of time until people, even those who know how I will react, and how it will upset and hurt me will say in frustration what they feel, without censorship: ‘I felt like saying it!” And so when I see them again I am scared, I may not remember why, but I am scared because they hurt me. And if I remember, that might be all I remember for a long, long time. Why is accommodation to not emotionally injure another considered so onerous?
“I don't pretend to know what love is for everyone, but I can tell you what it is for me; love is knowing all about someone, and still wanting to be with them more than any other person, love is trusting them enough to tell them everything about yourself, including the things you might be ashamed of”If you are reading this, I am trying to show my love to you.
Some days, with triggers and reactions, it just hurts. And I know that will likely get worse. I can’t expect much. So I look forward to the time when I don’t have to wait to forget. Then when they hurt me, they will hurt the mentally slow one, the one who can’t figure it out. I also know that I am lower than those who ‘learn how to accommodate me’… until they get frustrated. I know because they are the mirrors for my worth.
I hated the bullying at school, the hatred of those who were different in any way, the attacking of those who fought back just for fun. And how much of the day was dread. But I got through it. Vowed it would never be like that. And it wasn’t…until now.
Eighteen-year-old Ashton Larson and 19-year-old Brianna Broitzman are charged with the following nursing home abuse crimes:Oh yeah, Dementia is a hoot, so is being so weak that even when you call for help, those are the people who are hurting you. I am terrified, absolute terrified of going into a home. Because I know my Nan was abused by neglect in a home in this home. Because the workers, the good ones say a name of a home and shudder, so do the people at the caregiver’s network.
assault
abuse of a vulnerable adult by a caregiver
abuse of a vulnerable adult with sexual contact
disorderly conduct
failing to report suspected maltreatment
According to the criminal complaint, Larson and Broitzman spit in residents' mouths, groped genitals and breasts of some residents, and taunted other residents. Larson has admitted to getting into bed with a resident and making humping motions. She also acknowledged that she inserted her finger into a resident's rectum; she claimed that she was trying to initiate the resident's bowel movement, although this action is definitely not part of the job duties of an aide.
Larson also acknowledged that she patted the buttocks of another resident. Many of the nursing home residents have Alzheimer's disease and are unable to defend themselves…. The criminal complaint says that the group of aides gathered to "talk and laugh about the incidents."
Freeborn County Attorney Craig Nelson stated that Larson and Broitzman will probably receive only suspended jail sentences and probation for their actions”
A US national study of care homes found “results of this nationwide inspection found that 94 percent of for-profit facilities and 88 percent of nonprofit organizations received citations for non-compliance last year.”
Look on the bright side: hope that you and those you love are in the 5-6% of homes without patient abuse, malnutrition, patient neglect.
They want a rating system for nursing homes. I want a rating system for my managers, my doctors, my workers. I want a system where getting care or having an illness or disability doesn’t mean you fast-tracked from those who matter to those who don’t. One home in town was taken from VIHA due to the number of neglect deaths, but who is going to take it, when there is a monopoly of care?
This is part of the long dark night, and I think some expect me to write about the light, about how I see light ahead after this darkness.
I don’t.
We are the ones who are vulnerable, not the ones with power. We are the fatigued, and I have learned that trying to get culpability shown against an able bodied worker is almost impossible: they literally have five to ten to twenty times the time and energy and access I do. There is a thin white line and while people know this goes on, well, it isn’t that bad, or “I didn’t do it.” – except that knowing of a crime of abuse and failing to report it IS a crime.
"Children’s bodies aren’t like automobiles with the assailant’s fingerprints lingering on the wheel. The world of sexual abuse is quintessentially secret. It is the perfect crime."I was 12, a child, and afterward I was something else. I knew, in the way one does, that I would be killed, if I didn’t do what they wanted, or scream in ways that pleased them. How big is an 18 year old to a 12 year old? How badly do we want them to like us? How badly do they terrify us?
I used to fear that the four men who sexually abused me night after night would come back. Because I didn't survive, they just got bored, they left.
I used to believe that I deserved it, that it was a test I failed and that the THING I had become, with my childhood locked away, and the hope in pleasing them, so that they wouldn’t hurt so bad this night was me stripped bare. The belief that I deserved it, knowing that is true, and the shame of knowing that and the terror.
A minimum of 15-25% of women and 10% of men will have had sexual, physical or other abuse in their lifetime. Yet, in my hundreds of tests, and over 50 doctors, I have never met one who ever acknowledged abuse as anything other than a reason for mental instability: a liar, or a reason to deny care or delay treatment. I survived, I came back and my parents later said that that I stopped smiling for a long time, and I was ‘different.’ That was after my clothes were cut off and the swelling went down enough to walk again. I lived in fear, until I faced it with therapy. But in a society where I the individual is less than the statistics, my voice had less importance than a doctor, his theory or a book or article just read: so I must have PTSD, or attention seeking, or conversion. This is common, particularly with invisible chronic illnesses.
A higher percentage of experience abuse, and higher percentage of women have chronic disease yet I haven’t found one doctor who knows what a ‘trigger’ was or cared: A panic attack is a sign of mental and moral weakness, and will delay treatment.
(A 'trigger' is an emotional or physical reaction to something connected to past abuse, physical or sexual. Triggers can range from smells or touch or being put in similar situations, even hearing similar sentences, or accents as an abuser. The past and present can become blurred as fear floods, and nightmares, and daymares (like daydreams, but as if you are THERE again) can linger for several days).
Several doctors asked if my mother was my sister, or if my parents were siblings, and what illegal drugs I was on, tested me for HIV monthly. I’ve been held down by assistants while the ‘specialist’ ran electricity through my body, making it arc and flop over and over and over again. I would not scream. They would not stop.
During one test I was told that no matter how loud I screamed, no one will hear me or come. Humiliation in one form or another is virtually a synonym for ‘medical interaction’.
Because many cannot or chose not to separate me from the disease, I am objectified into a symptom or group of symptoms and fail to be a person. So when the disease eludes them, surpasses their knowledge, they see it as an attack, and retaliate on what they can: the person who has the disease. This is not uncommon.
Sexual comments, sexual touching, comments inappropriate in society, in a workplace, in a public place: calling you a liar, an addict, a coward, accusing you of motives, desires, that would require proof…elsewhere. This is not uncommon, particularly to younger women. To be ordered to take off clothes with no explanation, or have a doctor touch you, lunge in and grab you, grab parts of you, grab sexual parts of you, knowing you have been abused is not uncommon experiences. ‘Here is your room, take off your clothes.” Is common, as is the doctor watching.
How do I clean myself from the shame? I swallow it and do what I must to survive.
I had an annual care review. My care had been cancelled for a week, which at my level (just below critical), cannot be cancelled. I was told that in most of these cases the client (me) is the problem, as the worker requests not to go. She has not followed up. Linda is unable to sleep longer than 95 minutes as she changes the ice I sleep on. But we are denied overnights until Linda finds a job. An RN to change my pain patches? Denied until Linda finds a job. It was not a review of how they could do better, help more, but how we should be more employed, and how I should be under someone’s control.
I know about control. Maybe being trained as a dog, then as relatives and strangers used to call me at three, "little robot" helped me survive. Maybe it helped break me.
Two of them tied me to the bed frame, while one took my glasses away and started moving his knife up to my neck and down my torso. The fourth watched. I hadn’t started crying until he was whispering in my ear the things he would do to me with his knife, he cut me and then said louder that he might be cutting for hours. I looked to the watcher, the leader, and my eyes showed him my fear and the promise that he could do anything to me if he cut loose. But he didn’t. And somewhere in there, I broke, and wept, no control over my bladder, with him pushing down on me, over my face, atop me and the bare skin constricted, and goosebumps tightened as the blade separated the flesh at the end of my ribs. The cuts and his body jabbed and jarred, hot ice and pain coming through the covering of self-loathing.
The crying made them excited; screams made them hard.
Now, with a body that will not answer me, and people who decide how much pain I endure, and I fall to the floor, lying until noticed. Screaming from pain in the bed, not knowing when it will end or lying fatigued, or paralyzed, unable to drink until someone helps. And if they are angry, they won’t.
The annual reviewer (who showed up for the first time in four years) wanted to chastise me. “Just tell me whatever it is you want,” I said, “Pride is the vanity of those who have more than survival.”
When did the shame stop meaning anything? Was it when I rolled on the floor, on my fluid and filth and it meant nothing? Or when I tried to kill myself and failed? Was that when I stopped praying? Am I describing my 'now' or back when I was raped?
Both.
So desperate, I just wanted to make them happy, I wanted them to like me. If they were happy it wouldn’t hurt so bad that night. I thought I left that horrid feeling behind me behind until I saw my 10th specialist, my third pain specialist. I would come home and sob as they touched, and told me how lazy I was, how stupid, had me remove clothes, mused to wonder on why I still was alive, but it wasn’t worth their time to investigate before walking out. That was those who didn't want to see my genitals, or grabbed my mouth, confirming that yes, I had the Marfans raised palette. I suppose that is the difference, the adult doctors know what they will do to you but just don’t care. Or maybe there isn't a difference. When I was child, they would keep at me, stripping me of innocence was such a pleasure, the fear they saw as I understood and they kept going until I sobbed, first the breaking gasp of despair until they finally got the guttural howl of an animal. We both thought I was broken.
How do I describe four years of degenerative neuropathy, organ function and increasing pain? Or the loss of insurance, and knowing that the basic medication could be taken away, my home to could be taken away, not like when I was homeless and fending by trading, by living in the woods and toilets of McDonalds and Donut places. Now I am helpless. So what do you want doc? A hand job? A blow job? More? I always believed deep down after those guys left, and I turned 13, that I was made for using. I kept at the therapists until I believed it was POSSIBLE that as I don't think people are born or meant just for using, that I might be a full person too: No longer to be objectified and reduced. I don’t think the therapists had been through the ‘medical grist mill’ (since none of the therapists I was referred to after the illness had a patient die on them, some leaned away from me).
I have three things about then which I don’t talk about. The first is how while at first I resisted, I didn’t after a while, no, I created fantasies, including the sadism, for the dominant leader who liked that, so he could play in my mind and on my body, hoping he would claim me as his own. Victims aren’t supposed to crawl to those who hurt and sexually abuse them. The second is that I wasn’t the first. There was an slightly older girl before me, gangly and full of the awkward, beautiful innocence of a newborn fawn. I know that I tried to encourage her. It isn't better with two, it is just less alone. It was before the veil of how ugly this was all going to be was pulled back. She wasn’t strong. Extreme fecal incontinence developed, maybe a defense, maybe stress or terror. And one day, when I woke, she was gone. She was going home, I was assured.
And so it was me.
Like the belief I would get out of this, I gave up on trying to pass whatever test God was giving me. I locked up all the parts of childhood in a steel box and buried them deep inside. I couldn’t afford a childhood, so I locked it up, and the me locked and buried and the cold and dead me both went insane. And that insanity comes back now, and I hate it and myself both.
Pain, and fever that can’t escape a body, paralysis and time makes for insanity too. It is easy to be the problem. Fatigue and illness ‘inconveniences’ everyone. Managers can’t understand why they can’t send a random temp worker to shower me, yet would be offended if I started roaming my hand around their breasts and into their groin. Ahhh, I should understand that like before we are different, what shames others is what I should be grateful for.
I used pace and stay up late looking over a city, to be the one that comes. Because even if it is in the mind, children make up someone who will come. We ALL call out for someone to come. But no one does.
"Isn't life beautiful"So I strive until exhausted, empty and ill to convince someone that they deserve love. My life and experiences teach me that what I believe is not common, but maybe it will catch on. But I cannot ever believe in my heart that I was not born for suffering. Oh, I will continue sending postcards, cards and gifts. I have many, many moving boxes of gifts ready for the people who risks opening themselves to know me. Always the best, the rarest, because I have seen what it means to receive something and understand that the person cared enough, cared only about you.
Hemingway, before shooting himself.
And I accept that perhaps I was born to suffer. Self hatred and shame for existing are hard friends but ones that stay when all else leave.
Abused or ill, I am just meat now, and polluted meat at that.
Medical treatment, disability and chronic illness treatment don't have to be this traumatic, and alienating. And if you think, that because I share my story, that this is about just me, and not you, because you weren't abused, stop a second. You know that stats on physical abuse and sexual abuse. You know it isn't just me. Don't allow the 25% of those with Chronic, terminal illnesses and disabilities to be hurt and have the pain of past and present linked and merged just in order to ignore this, or me, because you end up ignoring them too.
No, don't read this and let the words pass by, or put on a game face: there is a host of people with so many voices, skills, vocations and talents they want to add to society who are excluded due to disability and illness, instead of included in the collective voice by accomodation, protected as equals. With the unemployment percentages five to ten times the national level for the disabled, the integration of services and assistance still waiting and the laws and views of disability and elder abuse as a 'victimless crime' if you are part of the society and aren't acting to change that: welcome to shame.
I love you, as much as I find your actions, or lack thereof, a disappointment. If that bothers you? CHANGE! Hold yourself to a higher standard, I assure there is always a way to hold ourselves to a higher standard. And I've yet to find it a bad thing.
