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As regular readers of this blog know, I’ve been struggling with worsening lupus for many years now.
Because the illness feels so very alive to me, as if it has an actual personality, I have referred to it throughout as “Mr. Wolf,” chosen because lupus is the Latin word for wolf.
I am sorry to say that my constant furry nemesis has gained an upper paw of late. As a result, I am taking a hiatus from penning this blog until I am again well enough to do the topics covered here the justice that they deserve.
As a sex-positive, bisexual woman, I believe that having a gloriously frequent, confident sexuality with a consenting partner of your choice (or being self-sexual) is vital in maintaining personal health – and even your very humanity.
It is also way beyond time that this country participates in a continuing frank and honest dialog about sex and relationships for the health of our children, and to promote a global/cultural understanding so that sex and gender issues no longer lead to hate, bigotry, bullying and too often to violence.
Those were the underlying goals that prompted me to begin this blog. Those goals continue to drive me, so I will remain very active on Twitter, re-tweeting news and commenting about these issues in a timely, and I hope, interesting and even challenging manner. I have found that penning 140 characters is much easier for me right now than writing and researching detailed posts required to put this blog together.
So, until Mr. Wolf gets sick of me instead of me being sick from him and I can resume this blog, please follow me on Twitter. Please do tell me what’s on your mind — and who’s in your bed and what you’re doing!
I cannot thank you all enough for your continued support throughout my battle with Mr. Wolf. I hope that I will be able to rejoin you here in this space soon. In point of fact, that is why I have called this post Part I: The Retreat, because when I am able to resume writing this blog that I love so much, the title will be Part II: The Return!
Happy living and loving, to all. Cheers.
— The Curator
Today in America we are celebrating our national Independence Day, but I believe it is also the perfect time to reflect on our personal independence, and perhaps to even declare our sexual orientations if we have not already done so.
Last week on Twitter, I suggested that members of the LGBT communities in the U.S. who are still closeted consider coming out today. I make the suggestion only if they feel safe and secure to do so. I’m a bisexual woman who came out in fits and starts over the course of many years.
I told my family and close friends as soon as I understood my orientation. That was almost 30 years ago when coming out was still fairly rare. To say that it was stressful is to understate the experience: I have never done anything that filled me with more horror and dread.
And guess what? It was worse than I imagined. My mother disowned me and actually damned me to hell. We never fully reconciled, and she died still believing that I was an abomination in the eyes of God and man.
My father, to his ever-lasting credit, worked to understand and accept who I am without judgment. It wasn’t always easy, but we remain very close and love each other without reservation.
I told very few people in my work life, and wasn’t fully “out” until I left my employment all together several years ago because of worsening lupus. Honestly, I just didn’t have the guts to be out at work back then, and I still regret that I wasn’t able to do so.
I present my personal history so that readers will understand that I don’t make the suggestion to come out lightly. What I do know is that unless I allow myself to live authentically, to be free to live as I desire, I will never truly be happy and prosper.
And that concept is exactly what the Fourth of July is all about.
The preamble to the U.S. Declaration of Independence says it all: “We hold these truths to be self-evident, that all men are created equal, that they are endowed by their Creator with certain unalienable Rights, that among these are Life, Liberty and the pursuit of Happiness. That to secure these rights, Governments are instituted among Men, deriving their just powers from the consent of the governed, That whenever any Form of Government becomes destructive of these ends, it is the Right of the People to alter or to abolish it...”
The Founding Fathers called equality “self-evident” when the document was drafted in 1776, but we still haven’t achieved that lofty goal. They were white males, many slave owners, who penned arguably the greatest Constitution ever written. Since then, African-Americans were freed. They were given the right to vote, and women eventually followed in being granted the opportunity for their voices to heard in the selection of those who govern them.
Nonetheless, bigotry and hatred remains. People of color, different religions, women, or those of us with different sexual orientations are all too often still victimized. In addition, the country is grappling with whether to allow same-sex couples to marry.
I believe that being able to marry if you are in a same-sex relationship is an “unalienable right,” as defined by the Constitution.
Just what does that term mean? Black's Law Dictionary, Sixth Edition, clarifies the term: “You can not surrender, sell or transfer unalienable rights, they are a gift from the creator to the individual and can not under any circumstances be surrendered or taken. All individual's have unalienable rights.”
Thus, if you are an American, regardless of your ethnicity, faith or lack of faith, gender, age, or sexual orientation, you have the legal right to your life; to be free; and to live your life in the way that gives you the most happiness.
Even if you are not a member of the LGBT community, there may be some other aspect of your life that you might want to declare today. I am a pagan, a follower of Wicca. Perhaps you are a pagan, too, or an atheist and you have been holding that within you as a secret.
Whatever is the truth of your life, every American has the right to live it to the fullest, safely and without shame. That is what today is all about.
— The Curator
My life has never been the same since first meeting Mr. Wolf more than a decade ago.
Sadly, he became so fond of me that he decided to move in without an invitation, and I have been woefully unable to evict him since, despite my very best efforts.
I have Lupus, which I refer to as “Mr. Wolf,” because lupus is the Latin word for wolf, and boy has he been snapping his big teeth at me of late.
I have the most serious form of the disease, Systemic Lupus Erythematosus (pronounced: er-uh-thee-muh-toe-sus), also called SLE, which is an autoimmune disease. As such, it is characterized by a malfunction of the immune system. In these types of diseases, the immune system cannot distinguish between the body’s own cells and tissues and that of ‘foreign’ matter. So, rather than simply producing antibodies to attack invading viruses, bacteria or other similar foreign substances, my immune system creates auto-antibodies that attack my body’s own cells and/or tissues.
Like the last of the Three Little Pigs, I've learned long ago to build my house's foundation soundly against his attacks. I have built it upon the concepts of spirituality (Wicca), love (bisexual), hard work, honesty and a willingness to play (the last has been the hardest part for me.) Nonetheless, the truth is that my house is about to come down around my ears.
The past few months have been bleak. Mr. Wolf has been feasting virtually at will — and sister, does he have a lot of will. During the current onslaught, I went to the doctor and was told what I already knew — Mr. Wolf is coming closer and closer to achieving his goal.
Last year, I had a horrible realization: I can no longer remember what it felt like to be well. Oh, I have memories of being very active, unabashedly athletic and whole, but they are no longer sense memories. It’s as if that part of my life was so insubstantial that it has been absorbed into the unreality of dream.
When I was first diagnosed more than 15 years ago, I was consumed with knowing why my own body was trying to destroy me. At first, I found myself looking deeply into the mirror: Who was this stranger that had taken over my body? And, even more importantly, how could I ever learn to live with her?
I fell into a deep-as-the-deepest ravine depression. There was nothing left of the person I once was. Nothing, absolutely nothing, remained. Or so I thought then. I had been wrong. Very wrong. A tiny, itty-bitty, bright even luminous speck of something had survived.
Was it my soul? I still don’t know, but I think so. I also came to believe it was the divine spark of creation housed within all beings; that indescribable “something” that connects us all to each other regardless of race, gender, age, creed, religion or geography. Whatever it was, I felt it. Visceral.
But for the past few months, nothing. It had been a long process, but I had finally begun to believe again that I had a body, that I was a woman, not simply a lump of flesh that temporarily housed my brain until my ever-approaching death. Unfortunately, almost imperceptibly, I had become a “thing” again.
I had thought that once I had found my “soul,” that knowledge — that sense of self, would be mine forever. It has been sobering indeed to realize that self-knowledge, even hard-fought, can be forgotten in the face of relentless disease and worsening disability. So, once again I stood on the very brink. I had managed to take a step back once before, but did I have the ability, or even the will, to do it again?
For days, I once again stared at the pill bottle, my “stash” I had hoarded for years that would bring on the ultimate darkness. If I gave in to its seduction and the sweet oblivion it promised, I would finally rest. And, I was so very, very tired.
I thought back, what had I done before? What was it that had caused me to give a damn whether I met the next dawn? Slowly, I remembered – it was that little zing of life. That shooting feeling that you are, indeed, alive. Even muted by illness it was still there, still calling me unceasingly back from suicide: Sensation.
I sighed and put the pill bottle away— again. I know now that I will not improve, or may never even stabilize again. The truce, the peaceful co-existence, the political accord that I had hammered out with him before is gone.
I must once again work to reclaim my body, make her a part of me again. Integration in a literal sense. I have been kind, nurturing, drawing her back — but that is no longer enough.
Before, it was my honest sexuality that was the key. I had worked to feel arousal again, slowly, gradually working to feel even a nano flash of sexual interest. Once I had done that, I almost immediately remembered the long-lost feeling of my “soul.”
When I was having sex, I was no longer disabled. The pain that has always been Mr. Wolf’s hallmark transcended into pleasure. Touch and intimacy has been my link to the divine for as long as I can remember. In those moments, I was my true self again. Not a disabled person on her way out, but a living, vibrant woman who was put on this planet for some purpose beyond my finite understanding.
It seems significant that I have to relearn this simple message yet again — but this time without my usual coping mechanism. My sexuality continues to elude me now, so I have to figure something else out. Perhaps I failed to appreciate that my real sense of self, my soul, cannot be wooed from the outside, but must be found within. Even though I had connected to her through my physical senses and the practice of a Divine sexuality, she is not really connected to my body at all. She exists in everything, in everyone. Even me — still.
Thus, I have decided to move forward knowing that my deterioration simply is. Mr. Wolf is real, and I can't pretend that he's just some euphemism I created to represent my disease. I need to find new ways to hang on, to continue breathing. I was given the gift of life, and it remains a gift still.
I also hereby re-dedicate my efforts to re-establish my intimate life. I want the most satisfying sex possible. For me, sex doesn’t just promote overall health, it has always meant the very breath of creation. Despite needing to learn a different way to remain connected, I refuse to give up hope that physical intimacy is lost to me now.
— The Curator
The body of a New Jersey University freshman who jumped off a bridge last week and committed suicide after his roommate secretly streamed on the Internet a live recording of him having sex with another man was recovered from the Hudson River by authorities yesterday afternoon.
Tyler Clementi, only 18 and an accomplished violinist, had been attending Rutgers University, in New Brunswick, N.J. On Sept. 22, he plunged off the George Washington Bridge in New York City after struggling with the alleged video disclosure.
He posted, “Jumping off the gw bridge sorry” to his Facebook page, then tragically did just that.
Police have charged his roommate, Dharun Ravi, with privacy violations and related offenses, for using "the camera to view and transmit a live image." Middlesex County Prosecutor Bruce Kaplan noted it's a fourth-degree crime, "to collect or view images depicting nudity or sexual content of an individual without that person's consent. The crime becomes a third-degree offense if the images are transmitted or distributed." The third-degree offense carries a maximum five years in prison if convicted.
Ravi allegedly activated his camcorder that captured Clementi and an unnamed man from another computer in the Rutger’s dorm room of a friend of Ravi’s, Michelle “Molly” Wei, whose room was across the hall. Wei has also been charged with the same spying offenses.
I believe both, who are also 18, should also be charged with having committed a hate crime, which would bump the fourth-degree offense to a third-degree, negating the need to prove the recording was distributed.
What happened to Clementi should NEVER happen to anyone, regardless of their sexual orientation, or behavior. Our society has failed abysmally to keep up with the harmful and criminal uses of technology; we have failed ethically, morally and especially within the criminal justice system.
Reality Shows like Big Brother and their ilk give their subtle and not so subtle imprimatur on inappropriate invasion of privacy, and a host of other bad behaviors suddenly seen as OK, and even hip. Those types of TV shows, as well as the timber of much of the conversation-dialog within U.S. culture right now, in effect dehumanizes our own citizens. Exploitation is funny and very, very cool – whether it’s the voyeurism of celebrities, the neighbors next door, or university roommates. And, if sex is involved, the more the better!
I’m sure Clementi’s tormentors didn’t foresee his death, but they had to know that he would be distraught over their alleged illegal actions, especially since his sexuality and orientation was unknown within their campus community.
Nine out of 10 gay, lesbian and bisexual students are bullied in school, according to a 2007 survey by the Gay, Lesbian and Straight Education Network. And they are four times more likely to attempt suicide, according to a 2007 Massachusetts youth risk survey.
Gay activist David Savage said, "What gay and lesbian kids most fear is rejection by their family, rejection at the hands of their friends, judgment from their preachers and their teachers."
A Clementi family lawyer released a statement saying, "Tyler was a fine young man and a distinguished musician. The family is heartbroken beyond words."
Read additional details in the blog below by Kashmir Hill of Forbes, or directly at her website:
Tyler Clementi Turned To A Gay Message Forum For Help Before His Suicide
It’s a tragic technological story heard round the world — a college freshman’s Webcam spying leading to a suicidal jump from the George Washington Bridge. Dharun Ravi, a freshman at Rutgers University, used his Macbook to stream video of his gay roommate having “a sexual encounter” in their room on September 19. The roommate, Tyler Clementi, did not know that he was being watched or taped. Sadly, he apparently did not notice the green light on Ravi’s laptop camera turn on when Ravi activated it from another computer in friend Molly Wei’s room across the hall.
Ravi invited other friends to watch the stream on iChat, and planned a second viewing on September 21st when Clementi again indicated he’d like the room to himself for a few hours, tweeting that day, “Anyone with iChat, I dare you to video chat me between the hours of 9:30 and 12. Yes it’s happening again.” It appears from a gay message forum that Clementi was already on to his roommate by that time.
The New Jersey police have charged Ravi (and Wei) with criminal invasion of privacy, which carries a maximum sentence of five years in prison according to the New York Times, and a possible $30,000 fine according to the New Jersey criminal code. As my colleague Andy Greenberg points out, some of the same technologies that facilitated Ravi’s invasion of Clementi’s privacy will now help prove his guilt in the case — Ravi’s Twitter feed. Ravi deleted it, but police can get it from Twitter, or Google cache, or one of the Twitter tracking sites like Topsy. As I’ve said before, deletion on the Internet is futile.
Clementi also has a digital trail on the Internet, and it appears that he knew his roommate had filmed him after the first September 19th incident.
A month-old tweet from Ravi indicates he discovered his roommate’s sexuality based on comments Clementi made on a gay message forum. Ravi tweeted on August 22, “Found out my roommate is gay,” and linked to a post he said was Clementi’s on JustUsBoys. It’s the same forum that Clementi appears to have turned to after discovering he’d been spied on. As Gawker noted, a user on the forum by the name of “cit2mo” posted a thread “college roommate spying…..” on September 21 at 7:22 a.m.
[JustUsBoys post show above.]
“so the other night i had a guy over. I had talked to my roommate that afternoon and he had said it would be fine w/him. I checked his twitter today. he tweeted that I was using the room (which is obnoxious enough), AND that he went into somebody else’s room and remotely turned on his webcam and saw me making out with a guy. given the angle of the webcam I can be confident that that was all he could have seen.
so my question is what next?
I could just be more careful next time…make sure to turn the cam away…buttt…I’m kinda pissed at him (rightfully so I think, no?) and idk…if I could…it would be nice to get him in trouble
but idk if I have enough to get him in trouble, i mean…he never saw anything pornographic…he never recorded anything…
I feel like the only thing the school might do is find me another roommate, probably with me moving out…and i’d probably just end up with somebody worse than him….I mean aside from being an asshole from time to time, he’s a pretty decent roommate...
the other thing is I that don’t wanna report him and then end up with nothing happening except him getting pissed at me…”
Other users advised him to report it to the school and make sure his roommate’s computer was closed during future encounters. Cit2mo replied:
“I feel like it was “look at what a fag my roommate is” –other people have commented on his profile with things like “how did you manage to go back in there?” “are you ok?”
“and the fact that the people he was with saw my making out with a guy as the scandal whereas i mean come on…he was SPYING ON ME….do they see nothing wrong with this?
unsettling to say the least….
so I decided to fill out the room change request form….its not guaranteed that you get a change…and i don’t have to switch if I change my mind or work things out over the next week (they won’t start filling requests until next week)…but I figure I might as well as see what they can offer me….”
More users advised him of the illegality of this video voyeurism. A famous case of this, of course, is that of Erin Andrews. The man who made peephole videos of her undressing was ultimately sentenced to 30 months in prison. Cit2mo responds:
“oh yah, on the school website it says recording people where there is an expectation of privacy (bathroom bedroom etc) without the consent of everyone involved could….COULD…..result in being expelled
the only things is…there are too many ‘could’s ….the fact that he didn’t ACTUALLY record me (to my knowledge) and the fact that the school really prolly won’t do much of anything...
but anyway, i’ll be talking to my RA later today for sure...
and yah, revenge never ends well for me, as much as I would love to pour pink paint all over his stuff…..that would just let him win...”
Cit2mo did end up going to the RA after Ravi’s tweet on September 21st:
“so I wanted to have the guy over again.
I texted roomie around 7 asking for the room later tonight and he said it was fine.
when I got back to the room I instantly noticed he had turned the webcam toward my bed. And he had posted online again….saying….”anyone want a free show just video chat me tonight”…or something similar to that….
soooo after that…..
I ran to the nearest RA and set this thing in motion…..we’ll see what happens……
I haven’t even seen my roommate since sunday when i was asking for the room the first time…and him doing it again just set me off….so talking to him just didn’t seem like an option….
meanwhile I turned off and unplugged his computer, went crazy looking for other hidden cams….and then had a great time.”
Cit2mo’s last posting to the site on the morning of September 22nd indicates that he emailed an RA a paragraph about what had happened. Though he seemed calm and collected in his postings to JustUsBoys, that night, he posted “Jumping off the gw bridge sorry” to his Facebook, and committed suicide.
These digital trails may answer questions that could not be answered otherwise. A big question now is why Clementi’s resident advisor did not get Clementi moved out of that room immediately.
In addition to the criminal charges arising from this, there will be civil lawsuits. Rutgers University may find itself the target of a civil lawsuit. And Clementi’s family and perhaps Clementi’s unnamed romantic partner of September 19 will surely sue Ravi, and perhaps Wei, for invasion of privacy. In a similar case in Kansas, a man was ordered to pay $55,000 after distributing naked photos of his ex-girlfriend via email. The claims were invasion of privacy and infliction of severe emotional distress.
Another case that comes to mind involving Webcam spying and schools is the famous case out of Philadelphia, where a high school handed out laptops and then activated cameras remotely without informing the students using them. In that case, prosecutors dropped the criminal charges, finding no criminal intent in the “spying.” Ravi will not likely be so lucky.
~~~~~~~~
We need to understand that the abuse that Clementi suffered by the deliberate, even cavalier exploitation of his privacy could occur to any one of us. Every person has something that is so private, so intimate, so potentially embarrassing that its disclosure without our permission would cause extreme emotional distress.
What are we doing? What the hell are we doing?
— The Curator
I routinely visit the doctor for ongoing treatment of Lupus, but I got way more than I bargained for last week when I got into it with a group of patients in the waiting room.
The issue that brought about the mini-skirmish was homosexuality in general, and gay marriage in particular.
Guess I’d better explain. When I arrived, my doctor was running late (don’t they always?), so I found a seat in the small and very crowded waiting room. A TV was blaring a Jerry Springer-like program in the corner. I’d brought a book to read, so I sat as far from the set as possible, which sadly put me facing the group of eager TV viewers.
These folks included more than 20 mixed race people, a little older than a normal cross-section of the public because the doctor we were waiting for is a rheumatologist. The key “player” in what turned out to be my personal drama was a man in his 30’s who had driven his elderly mother to her appointment and was waiting with her. He was quite handsome: tall, fit – cut even – with a stylish shaven head, but a less-than-stylish toothpick sticking out of the corner of his mouth. He was wearing expensive summer shorts and a blue polo shirt. He was also very loud.
At some point on the TV program, a homosexual man and his partner were picked out of the audience. They said they were planning to wed when/if it ever became legal in their home state. Immediately, the handsome man I was sitting across from began making unpleasant remarks about the gay couple on the TV. He loudly expressed how disgusting, etc. the whole thing was, prompting the bulk of the remainder of those in the waiting room to chime in their complete agreement. The handsome man, egged on by the obviously appreciative crowd and vise-versa, began to laugh derisively at the men on the TV. The handsome man and several others in the waiting room continued to express and utter a lot of vicious gay-bashing insults, and similar remarks that I will not dignify by repeating here.
As the whole thing unfolded, I literally felt sick to my stomach. I am bisexual, but even if I was straight, I would have been deeply offended by the terrible hate-talk.
After a few minutes, I found that I had almost involuntarily put my book down and was facing all of them. Quite abruptly, as if I was looking down on myself from some place high and hovering just below the ceiling, I interrupted this room of average Americans. At that point, almost all of them were laughing merrily – very happily bashing homosexuals, the handsome man at the center of it all, his eyes absolutely twinkling with cruel delight.
With as level a voice as I could manage, I softly asked them if they, “did not like gay people?”
An African-American woman who appeared to be in her 50’s answered without hesitation, “No,” prompting the majority of the group to all nod in agreement. The handsome man laughed again, and the others joined him.
She went on to proclaim that she was Christian, and that nowhere in the Bible did it say that homosexuality was anything but a sin, or that “those awful, awful people could marry.”
Another woman, who was white and said she was Italian-American and Catholic, said she agreed completely, proclaiming that, “those sick people will all go to hell, and this country will be better off without them in it.”
I told them that I couldn’t understand that view at all, that I tried to judge each person as an individual, and not to stereotype them. I said that I had thought that Christianity promoted that very approach. I also noted that the Bible also fails to condemn slavery, while actually providing instructions to slave owners. As a result, I suggested to the African-American woman that perhaps her citing it as support for an anti-homosexuality argument wasn’t the best choice under the circumstances.
For some reason, I kept talking. I noted calmly that many of those who were speaking out against homosexuals in the room were of different races. I told them that to me, “gay-bashing is just another form of bigotry – a different flavor of prejudice.”
The handsome man, who happened to be African-American, had suddenly become very, very, angry. He sharply and loudly criticized me for “daring” to speak out “in favor of those fags,” and for horribly comparing it to racial bigotry. He said I was "full of shit,” and that he had a right to his opinion.
I told him I agreed completely that he had the right to believe anything and everything that he chose. Swallowing my now palpable fear, I unwisely added, “but you’re in a public place, laughing at and insulting a group of people simply because of their sexuality. I really see it as bigotry. Your conversation and behavior are very offensive to me, and I would appreciate it if you would stop.”
An immediate and deep-as-a-ravine silence followed in which the only sound I could hear was my own heart thudding wildly in my chest like it was trying to jump completely out of my body, along with the constant drone of the TV.
“We’ll stop – but not because of you, because we’re finished talking,” he said, twisting his handsome features into an honest-to-God sneer. Then he leaned way forward in his chair and actually jabbed a finger out directly at me, reaching very close to where I was sitting. “Change the subject, or this is going to get very ugly for you – right here, right now.”
Look, I'm almost twice his age and disabled. I’m a 54-year-old white woman who can only walk with the use of two canes.
Somehow, I managed to look directly and deeply into his now hate-filled and threatening eyes. I knew in that instant that if I said a single other thing to him – anything – he really might strike me. And, if he did, I also knew he’d never suffer a pang of conscience, even though any blow from him would injure me quite badly.
“No problem. I have my book,” I replied, my mouth suddenly very dry. As I looked away from him, not one person in the waiting room made eye contact with me. Turning to my book still on my lap, I found that my hands were shaking uncontrollably.
No one spoke the rest of the time we were pressed together. When it was finally my turn to see the doctor and we were alone in an examination room, she asked if I was OK. The receptionists, all women, had heard everything and had told her because they were upset. Despite how they had felt, not one of them had tried to stop the gay-bashing.
Even so, the doctor thanked me for speaking out. She said that, "a lone voice against hate and intolerance does make a difference." She said it puts a different energy into the minds of everyone present. She said she thought it was fear that had stopped some to speak up who probably had agreed with me; some that felt gay marriage was OK; or others who believed that homosexuality was nothing to be made fun of, and that gays should not be abused.
I found out later that the oh-so-thoroughly-furious-handsome man was...wait for it...a police officer! Just what we need, not only another homophobic-bigoted man – but one with a badge and a gun.
— The Curator
