Monday, December 20, 2010

The Long Dark Night: Who will Answer it?

“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.
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.”
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.
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”

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
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.

“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.”

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:
 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”
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.

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?


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"
Hemingway, before shooting himself.
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.

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.


Noisey said...

I wish I was on the correct continent to just drop buy and give you a hug, so I send a virtual one instead (it's probably less painful anyway!) I know it doesn't make any difference to how you're treated, the **** life has chucked at you or how ridiculously self-absorbed society is but it's what I can do, so I'll do it :)

JaneB said...

Oh Beth, oh Elizabeth. I don't know what to say. But I read, and I'm not looking away. Virtual hugs, 'good thoughts', I can send, and do.

SharonMV said...

Dear Beth,
I love you - not only for who you are but because you know the darkness and speak out. The only light that can reach that darkness is understanding.

I started to read your post and my heart twisted. I must come back and read it again. I'll try to post again when I've done that.

thank you Beth, my star in the night. Even a falling star blazes through the darkness


Elizabeth McClung said...

My story is just my story and 20 years of writing and a week of editing. There are tens to hundreds of thousands of men and women dehumanized, triggered into their own private horrors they had kept secret all these years.

I don't write for a 'poor Beth', I write because if I am an equal human then I would like a system that treats me as one, not nurses and EMT's talking about pranks they pulled (as I wrote about in an earlier blog post), not this whole 'the teacher is away so if I have a bad day, I'll take it out on someone who can't tell anyone, or won't be believed' - Who really wants to experience the verbal humiliations of cliques of bullying from a bad teacher to classmates to parents who may try to live your life for you, or theirs through you.

This is the night I live in, so this is what I report.

Noisey: Thank you.

Jane: It is important to not look away, thank you - if the rampant sexual abuse was not so unspoken, then laws would be passed and things would be done, instead of individuals reliving shame over and over again. And bullies - one study found that women in the workplace who gain positions of power are MORE likely to bully the women under them. The system teaches behavoir - when the society accrediting hospitals calls a health warning not for hygenie or a rampant disease but for doctor's bullying affecting patient care, that's a problem, right?

SharonMV: I am not a lightning bug - I cannot create light, only report darkness and tell what is occuring or has, and maybe I am a falling star, because the illumination comes from being burned and reduced until gone. I want to be a lantern, part of society, of use but also taken care of, not something so far away.

wendryn said...

I'm here. I'm not looking away. I have no idea what to say, but I'm impressed, as always, by your writing, your strength, and your honesty.

I can't reach, but if I could I'd give you a hug. Not because I feel sorry for you, but because I am amazed by you.

cheryl g said...

To share so much of yourself, to expose yourself is very brave. Bullying and abuse is too much a part of our society. Giving the bullied support and safe havens is good but every effort also needs to be made to stop bullying and stop it being accepted or ignored.

To have your dark night be never ending is horrible and unfair. I can't change the past but I can make every effort in future to speak up, act and not look away.
I am only one but change must start somewhere.

Patient C said...

You are amazing. What you wrote was disturbing, and vulnerable, and awe inspiring. Thank you for this.

Linda McClung said...

To have conquered something horrible only to face it again and again as if it is the first time would be a nightmare. One you can’t wake up from. When you are facing something like past abuse for the hundredth time I just think it is so unfair. Why do you have to go through it again. It makes me feel so helpless as all I can do is be there – I can’t fix it.

You challenge me to be more assertive with present situations of abuse – something difficult for me, but worth it as sometimes it can change the outcome. I will try to protect you from abuse in the medical system.

“You are not asked to live there, you are sent” – your choice has been taken away.

You have an amazing amount of horrifying statistics about bullying – youth and the disabled. I like the quote from Buddha – so true. Words can be so painful. I can understand why no one would want to go to a residential care facility if the incidents of abuse are so high. I hope the two accused aids get a stiffer sentence and that it might dissuade others from doing the same.

I ache for the 12 year old you who was abused. Your description was so vivid and makes me mad that the people in charge let it happen. And the circumstances about how you came to be in that situation…grrrrr.

I don’t believe anyone is born to suffer. You’ve had more than your fair share, that’s for certain. Self-hatred and shame are difficult things to live with. I will continue trying to show you that you are worth loving and what happened to you was a result of someone else’s actions and nothing for you to feel shameful about.

SharonMV said...

Dear Beth,
I'm sorry you didn't like my language. You don't seem far away to me. I feel very close to you but I know I may be presuming on a closeness that you no longer remember. It is "only" your story, your life, but it takes you to live it and definitely someone of your talents, dedication and passion to write it. And someone of your honesty and openness. These last two are qualities you once said you appreciated in my writing. When I called you my star, to me it was something more intimate, a drawing of you closer to me. I did not mean to set you apart. A shooting star, I should have said, or part of a meteor shower, or one of the Pleides with strong sisters beside you. But as much as you talk about flying (or maybe you are leaping to great heights like in your dream fighting game), I should know that you like to be down on the ground, on earth with all of us, & the rest of humanity.

You do have a light within you, a fire in your heart. And your words do shine a light, like a lantern or a sword.



Hi Beth I found a poem you migh like
By heather grace stewart
You’re texting him and he’s texting her;
You know how it goes, mostly a blur;
Calling me geeky, or maybe just strange.
They’re just words,
But they’ll last for days.

You post a photo, a few words, not more;
They’ll laugh so hard when I walk through that door.
Calling me gay; one of the queers.
They’re just words,
But they’ll last for years.

Text it, blog it, put it on Twitter.
They’re just lies. They’re just litter.
You’re a bully on a bus
with a prepaid phone, and words.
Just words.

Is that all you’ve got?

Someday I’ll be stronger, with all this behind me,
Someday I’ll shine brighter, my true love beside me,
And you’ll be paying the same old fare;
Just a bully on a bus marked
Going Nowhere.

In about 20 years, I know the story,
You’ll come up to me with a phony “sorry.”
Wishing you’d made something out of yourself.
They’re just words,
But, somehow, they’ll help.

I’ll smile sweetly, try not to stare
at your sad old eyes and thinning hair.
Seeing the jealousy in your gaze;
You’ll have no words,
No words for days.

Text it, blog it, put it on Twitter.
They’re just lies. They’re just litter.
You’re a bully on a bus
with a prepaid phone, and words.
Just words.

Is that all you’ve got?

Someday I’ll be stronger, with all this behind me,
Someday I’ll shine brighter, my true love beside me,
And you’ll be paying the same old fare;
Just a bully on a bus marked
Going Nowhere

You’re going nowhere.

Lorna, Bob and Liam said...

Beth, I'm still reading, listening, reacting... hopefully changing, even in tiny increments.

I will make this journal entry required reading for my university class on understanding diversity. One of the most difficult things about teaching young folks is that it is very, very hard to "teach" empathy, which is a necessary condition for understanding those who are different from us (meaning, pretty much for every single individual, every OTHER single individual). I can only set out the words and experiences of folks who live certain journeys and hope the students are touched by their words. Yours are powerful and evocative - you continue, even in your darkness, to give to others. You WILL be heard, by those who can learn and care. I promise.

rachelcreative said...

I can't change what happened to you or what you carry with you. I wish I could. But I can learn and open my mind and not turn away from the difficult things.

Thank you for being so honest and for sharing with me.

Raccoon said...

There is so much here that I have absolutely no clue how to talk about: it is completely outside my realm of experience.

So I will just say this: if you're trying to scare me away, it's not working.

I'm still here, still reading. Still trying to expand my knowledge, my experiences.

I'm still here.

Elizabeth McClung said...

Raccoon: I'm not trying to scare you away! I'm not trying to scare anyone away (but I would avoid care home if possible). I wanted to write the reality of bullying (you were never bullied?), and I guess how the things I thought were forever gone, like at graduation going, "Well, I'll never have to deal with that again (some teacher who bullied, or cliques, or all that) and how now with the disease I have, I end up having to relive so much of the worst, and I am not the only one. I did not know that I have relived parts of being raped dozens to over a hundred times - and that Linda has had to be there to comfort the child, or who is there at that time. I told her it seems so cruel to HER to have to see that, and she felt it was cruel to me. But it is what is, you know, and I think a rating system would be a start (so many people use the MD rating system now), and that maybe here, and other places, there needs to be more kindness, and tenderness in caring for patients - I think it is interesting that four TV shows came out THIS year on that subject (Mercy, Trauma, Hawthorne, Nurse Jackie) - about the people who are there, who advocate for the patient, not about the doctors who decend like House M.D. - I am working on my breast masturbation blog if that is any consolation for a happy Xmas season?

yanub said...

Let's see--will Blogger let me leave a comment?

yanub said...

whoa--it worked! First time in months!

And now that I can comment, I don't know what to say. But I am listening.

Lene Andersen said...

I don't know where to start with this,. Don't know whether to stay in the theoretical when talking about abuse against people with disabilities or to dive into the personal. To remember what I've repressed, what I don't think about. The hospital where I spent years and where decades later, when I get within 10 km of it, I'd get physically ill. Haven't been back to Denmark in 17 years, but I suspect I would still have the same reaction.

I don't know what to do with the rage I feel towards those who have abused you, were they from your childhood, your youth or the doctors who have acted as monsters instead of helping you.

But I hear your call for change and I will follow through with action.

Baba Yaga said...

Some of your posts take several readings to take in. This is one.

Power dynamics are at the root of almost everything, aren't they? & the need is great to pretend otherwise.

I'm sorry the powerlessness, the abuses of power, the shame of receiving htrem and fesring them, the fear and the darkness are so present for you. Wish I could help - bring you softness and fellowship and light. I'm glad that you speak anyway. It's important; and it allows us to love the you of now a little more truly, than mistaking you for the you of then.

(If that actually makes sense. I'm losing sense a little.)

You matter. I hope you can know that.

Dawn Allenbach said...

I am so grateful for your brutal honesty. It makes me that much more determined to fight the incident that happened to me earlier this week. I can't blog about it now, but I will. I will fight, but first, I need to put myself into a safe place from which to fight. I am fortunate, though -- I can get to a safe place. I can imagine the place in which you are, I recognize that I could also be in that place one day, and it scares the hell out of me. I just hope that as I go into my own fight that I can be a strong as you, because I realize that I'm also fighting for those who cannot speak, who maybe cannot even recognize that they are being abused or neglected.

Thank you for keeping it real, for being a voice that needs to heard.

I love you, too.

Elizabeth McClung said...

Thanks Dawn and Baba Yaga - I had to live or relive a lot over 8 days to write that so it took a toll, and I wrote it through the entire night, draft 4. What happened to me is nothing because it is so common - and yet, no one will talk about it. But in a year or two or five, when they need it, I hope they remember the part they need.

Neil said...

I want to say something supportive, dear Beth, and I simply do not know what to say in reaction to your post. But I'm still here still reading, still loving you, and still putting a very high value on your words.

Love and zen hugs to both of you,