Munchausen by Internet

New technology brings with it new ways to hurt, scam, and lie to other people. I know more than I'd like to about trolls, phishing, and other common abuses of the Internet. But I hadn't realized that there are apparently a disturbingly large number of people masquerading as terminally ill.

I read "The Lying Disease," an article by Cienna Madrid in The Stranger, our local alternative paper. I found the article deeply affecting, and the abusive behavior described in it enraged me. Here's the gist: some people pretend to be ill in online correspondence, seeking attention in forums that exist for people with illnesses to find community and support, or by communicating directly with others who they expect to be sympathetic. It's like Munchausen's Syndrome, the infamous mental illness whose sufferers fake physical illnesses to the point of having unnecessary surgeries. (Munchausen's by Proxy is the disease in which you cause illness in someone in your care in order to bring sympathy and attention to yourself; if you saw the movie "Sixth Sense," you saw Munchausen's by Proxy.) But with Munchausen's by Internet, no one has to actually suffer physically for you to benefit from the sympathy and attention of strangers. Therefore, it's much easier to achieve and it seems to be becoming an epidemic.

Why would someone feign illness? Is it in part because the media portrays chronic, serious, and terminal illness as romantic? For example, people with cancer are portrayed as noble and courageous; dying from a terminal illness (as opposed to a car accident or gunshot wound) is shown as tender and touching. And of course, there's plenty of drama involved in TV and movie renditions.

When she lost her hair during the first chemo treatments in
2006, Sandy had me take photos every few days to document
it. As her hair became wispier, she ended up with a little
pointed bit on the top, like Tin-Tin. I was surprised that she
didn't know who that was, but after doing a little online
research, she embraced the nickname.

In real life, at least as I witnessed it, terminal cancer was a bother. It and its treatment got in the way of Sandy being able to do the things she wanted to do, but it wasn't dramatic except for the initial diagnosis period and the roller coaster we were on the last five weeks of her life. Even her severe headaches and nerve pain in the spring weren't dramatic; they were frustrating and agonizing, but if anything, Sandy wanted to pretend they weren't there. She wanted to find relief and forget about them.

Sandy never wanted cancer to become her identity. She downplayed her metastatic cancer, afraid of whining and of changing how people thought of her.  In fact, she was surprised to learn that she'd been so casual about it that most of the fans at Escapade in early 2011 didn't even know she had cancer.

I understand the desire to have people shower affection upon you, and I was certainly gratified by the outpouring of love that Sandy received. But I can't imagine enjoying affection and caring that was based on a lie. My overriding need throughout my life has been to be known, and to be loved by those who know me best. How hollow must the joy be when you're shown love based on a fraud?

Sandy's biggest frustration in the months before she died was that her energy each day lasted just long enough for her to do the basics (dress, eat, check email) and go to whatever appointment she had that day. Her to-do list wasn't getting any shorter. Her days felt pointless because she felt she was just treading water.

Now, imagine one of these cancer fakers had pulled her into a correspondence, sucking the tiny bits of energy she had into their manufactured dramas. That's exactly what these folks do, demanding the attention and focus of people who need to be prioritizing their own care, their own lives, and making a difference in whatever meaningful way they can, whether they're dying or suffering through treatment for an earlier stage of cancer. It's appalling enough to drain some energy from a healthy person, but far more damaging to further exhaust someone who has no reserves.

It's clear to me that Munchausen Syndrome by Internet does need to be added to the DSM-V, due out this coming May. But I'm wondering if that's enough. I don't know how you'd create criminal or civil law to cover this, exactly, and it's territory that seems a little problematic to approach through the law. But the damage this behavior does is real, and it's perpetrated upon people when it's likely to do the most harm.

Entanglement

For as long as I can remember, I've believed in and been fascinated by psychic phenomena. There were many examples of psychic connections in my immediate family, especially between me and my sister, and while it wasn't always convenient, it was far from spooky. It just made sense to me that people who shared a strong bond would also share a wavelength of sorts.

Most of my psychic experiences have been incredibly minor things, and not all that useful. But they're real, and they're challenging to make sense of. So I'm always delighted to learn about others' experiences, and about any possible explanations.

I'm not having as many visitation dreams lately, but in a few
of the more recent ones, Sandy's been with Grumpus. I hope
their entanglement stretched beyond death. She just adored
him, and he adored her right back. When I have those dreams,
I'm delighted to see him as well as her. (Pico, too, though
he shows up less frequently. Prudence and Roo are sometimes
in what may be visitation dreams, but never with Sandy.)

I just read Entangled Minds, by Dean Radin. The book explores the relationship between psi (psychic phenomena) and quantum physics. Very simply put, the theory of entanglement is that particles that have been close will forever be entangled, no matter how far apart they get. This has, in effect, been proven at the level of atomic particles. Scientific experiments have also shown an entanglement effect with humans. (A simple example: Poke one person and another person's fMRI shows brain behavior indicating a reaction to being poked, though that person couldn't see what happened and hadn't been told.)

Entangled Minds goes into detail on numerous scientific experiments that have shown that presentiment (sensing a future event), clairvoyance, and similar phenomena are not that extraordinary. In fact, the studies on presentiment imply that, subconsciously, we are constantly scanning our futures, preparing to respond to events. This was shown by measuring skin reactions to violent, erotic, or neutral scenes - the skin reactions occurred a few seconds before the scenes, which were displayed randomly. The studies are incredibly cool, and I find it encouraging to think about what this means for our potential.

Of course, not everyone is clairvoyant or senses the future. Radin describes surveys that asked people about their experiences and then compared those results to other data about the group, including demographics, personality qualities, and other individual characteristics.

First, who believes in this stuff? Skeptics like to say that belief in psi is due to ignorance, similar to superstition. But in fact, the surveys tell a different story. Religious belief and belief in superstition both decline with education, but belief in psi becomes more common with more education.

Who experiences it? People like me! Women more than men. Sensitive people (people sensitive to sound, odor, touch, the environment, etc.). Empathetic people. Creative people. Intuitive people (that one seems tautological to me, as intuition is likely just a form of psi, I think).

Here's the basic theory, as I understand it: We're all entangled. We're all capable of psychic connections. But we have latent inhibitions that help us focus on the present world and its dangers and opportunities. Without these latent inhibitions, we'd be overwhelmed by the sheer amount of information we receive. How much psi you experience has to do with the level of your latent inhibitions. Some people naturally have lower levels; others have trained themselves to be more open through meditation, yoga, or prayer.

Radin doesn't talk about this in the context of communicating with the dead, but once you accept the theory of entanglement itself, and the legitimacy of psi,  it isn't much of a leap to recognize that entanglement would continue, and that those who are predisposed to psi would find it easier to receive communication from loved ones who have died.

The studies on psi are rigorous, redundant, and surprisingly mundane; the results are what are exciting. I haven't found anything yet, though, about scientific research that explores what happens to consciousness after death or how communication is possible. Honestly, I don't know how you'd set up the studies, but it seems like we ought to be getting closer.

Until then, I'm going to attempt to enhance my psychic openness through more regular meditation. Even if I don't receive more communication from Sandy, feeling more connected to the universe is a worthy goal in itself.

Theories of healing

Heal: To become sound or healthy again.

After open-heart surgery, I was very motivated to heal. I knew what healing looked like: it meant reclaiming my life, my energy, my independence. It meant freedom from pain and from painkillers. It meant achieving milestones, such as the ability to walk up the stairs without a spotter, to shower by myself, to walk longer distances and to walk them a little faster every week, to be able to lie on my side. I knew I'd healed when I could bike up long, steep hills, when I could turn my attention to the issues of everyday life, and especially when I could forget about having had surgery.

After Sandy's bike accident in 2005, we took
pictures every day so she could track her healing
progress. I guess this blog may be serving the
same purpose for me now.

It wasn't an easy process, and there were certainly times that it felt impossible. But I had a picture of what success would look like, and I felt no ambivalence about getting there. The stress and effort of the months between learning I needed surgery and actually having recovered from it (about seven months, all told) would be just a detour from my real life, the one I loved.

I think I've always approached healing the same way, whether from a physical injury or an emotional trauma: Start with the visualization of success, what life looks like after healing. Set up some milestones. Figure out how to get there, and then do it.

So how do I heal from Sandy's death? Certainly, pain and the sense of being lost would indicate the need for healing. But I've been flummoxed for sixteen months about how to envision success.

Reclaiming my life? But the life I want is with Sandy. Recovering my independence? I'm feeling a little too independent right now, desperate for Sandy to lean on and not trusting anyone else to fill her spot.

I can't picture a future in which it's okay that Sandy died, and I don't want to. It's not okay. It'll never be okay. But that's where I keep going when I try to come up with goals. I reject that vision, and therefore reject the concept of healing.

I was thinking about all of this yesterday, addressing the conversation in my head to Sandy, as I often do. I wondered if I would finally have to let the fact that she's not returning permeate my cells, give up my delusions, give up the last strands of hope I have in the impossible occurring. I was walking as I pondered this, and I turned a corner to see "We won't grow old together" on the Northwest Film Forum marquee. A movie, apparently, but it sure felt like a message to me: C'mon, Brie. Let go of it.

To become sound or healthy again. I have most of my energy back, though not all. I'm working, volunteering, making progress on various goals. I'm fairly social, though I haven't quite figured out how to weave my various friendships into a solid feeling of community. But that's been a problem I've always had, as it's easier for me to bond with people in the context of a project; I lose touch when we are no longer working together toward a common goal.

Physically, I'm fairly healthy. Mentally, though, I'm not so sure. My goal in healing from other wounds has been to be able to forget about them; this one is very different. I think my task is to see a future in which I am able to embrace my memories of Sandy and the comfort I find in her spiritual presence without resisting the fact that she died and is not returning physically. I can't quite picture that future yet, but I suspect that's where I'm headed. This is so much harder than open-heart surgery.

Election reactions

Marriage equality won big Tuesday night, securing the right for same-sex couples to marry in three states and defeating an attempt to amend the Minnesota constitution to ban same-sex marriage. Each of these wins was unprecedented. Any one of them would have been worth celebrating, but taken together, they affirmed that the American public is moving towards recognizing LGBT families as equal.

I was pretty sure we'd win in Washington, though I wasn't confident. As we grew closer to Election Day, I wondered how I'd react to the results. Obviously, defeat would have been devastating. But victory? It's all so bittersweet for me now. I decided not to plan to go to the campaign party downtown, or even to join the revelers in the streets of my neighborhood — at least not until we'd had the results and I could see my response. I didn't want to be the widow in the corner keening while everyone else was drinking champagne and cheering. But neither did I want to feel alone, despondent.

As it turned out, I wasn't keening, or at least not any more than usual. Neither was I excited. No tears of joy or sorrow came to my eyes when I read the results of our referendum or heard the good news from Maine, Maryland, and Minnesota. I felt numb, with a little relief around the edges. My reaction that night was familiar, actually. It was how I felt when I paid off the mortgage last year: what would have been a celebration with Sandy was, in her absence, just another task done. Mortgage paid off? Check. Same-sex marriages legal in Washington state? Check. No more a cause for rejoicing than getting the cats fed or library books returned. That in itself made me sad, and that sadness, the disappointment that I didn't feel like celebrating — that's what eventually led to keening.

December 1996 at the Adobe holiday party

If Sandy were alive, we'd be planning our wedding for December 16, our 17th anniversary. We'd be reserving a place (probably at the Arboretum, indoors because it's winter), arranging for an officiant, inviting people (arguing a little over how many to invite), figuring out what to wear. The plan had always been for my mom to make Sandy a dress from a lovely piece of blue raw silk that Sandy has, but because my mother was in a car accident a few weeks ago and is currently in rehab, I don't think she's up to making any dresses. In fact, she'd probably be attending our wedding by Skype. These are the things we'd be focused on, in among the tasks of daily life. Underlying everything, I know we'd both be elated.

But I don't have the distraction of wedding plans, or the background sense of elation. I still feel vulnerable, even more so after my state voted on whether to recognize my humanity — and worse, voted on Sandy's. How dare they? How dare anyone claim the authority to judge the value of our relationship? Even winning, the vote itself takes its toll on my psyche. When I think about that 46.85% of the state who voted no, it's hard not to take it personally. Honestly, I'm not even trying not to take it personally. It's deeply, deeply personal.

At the same time, I am profoundly grateful to the tens of thousands of people who gave money, volunteered, and made their support for equality visible here in Washington, matched by those in other states who did the same. I am grateful for the generations of lesbians, gay men, bisexuals, and transgendered folks who courageously spoke out about their lives and their love. Sandy rightfully said we needed to be out everywhere we could be to support those who can't be. With each step toward equality, the number of people who can live their lives fully and openly increases. That is a good thing.

Ultimately, on June 30, 2014, our registered domestic partnership will convert to a marriage, retroactive to July 2007, and Sandy will have her deathbed wish. No matter what else I feel, for that I am incredibly grateful.

Making new friends with Sandy

One of Sandy's favorite blogs was Smitten Kitchen, now in its seventh year. It's an incredibly personable blog, inviting readers into Deb Perelman's tiny New York kitchen and her creative thought process. Sandy followed Deb as she explored various cuisines and ingredients, read the posts that followed Deb through pregnancy, childbirth, and her son's earliest years. I didn't read the blog, but I enjoyed the bits Sandy read me and the recipes we tried together.

Why don't I have photos of Sandy cooking? This is her in the
kitchen, but I think it was meant to show off a new hair color.

One of the many things I've missed since Sandy died is the additional pair of eyes on the web. She had her set of blogs, and I had mine, and we shared the intriguing or important bits with each other. Now that I'm responsible for 100% of my own blog exposure, I always feel like I'm missing something, but not enough that I try to read everything Sandy read in addition to my own collection.

A couple of months ago. I finally set up an RSS feed so that I could access Nate Silver's blog on the New York Times website for free. I opened Google Reader and set up an account. I'd never used it before, but there were several sites already listed there, and each one of them was one that Sandy had frequented.

I was confused at first, thought maybe I'd mistakenly signed into Google as her. But no, I hadn't. Google Reader was just making suggestions that happened to correspond exactly with Sandy's reading tastes. She'd rarely, if ever, used that computer, and I'd not visited the sites on it; sites I visited frequently weren't among the suggestions. I took the list as a welcome communication from Sandy.

Smitten Kitchen was among the suggested sites. I subscribed to the blog, made a few of the recipes in recent posts, and learned almost immediately that Deb had a cookbook coming out and would come to our local cookbook store, the Book Larder, on her book tour. A friend agreed to go with me, and I was psyched to have the opportunity to meet someone whose writing had given Sandy so much pleasure.

Weeks later, I realized that the event required tickets, which had long since sold out. But another event was scheduled for the following morning at the University Bookstore. I emailed my friend, letting her know we were out of luck for the Book Larder reading, but there was a second one. As I wrote, I expected to say that I was thinking about going, but what came out was "Sandy wants to go." I was startled, laughing, and deleted the words. And then realized that the words were accurate, Sandy did want to go, and she wanted me to take her there.

I met Deb Perelman this Thursday morning. She's as delightful in person as she is on her blog. I thoroughly enjoyed her presentation, which was mostly a Q&A session. I also enjoyed talking to the woman sitting next to me; she was lovely and our conversation ranged from her recent retirement and my self-employment to death and grief and cooking and politics and volunteering and learning to let go of our need to make everything perfect in the world. I had another wonderful conversation with a couple of women in the long line to get the book signed. People who like books and cooking are people I'll happily spend hours with.

When you get a book signed at a reading at the University Bookstore, someone comes along ahead of time and writes out the name you want in the signature so that the author doesn't have to ask you how to spell it. So Deb opened the book, saw the sticky note with the name on it, and asked "Are you Sandy?" I explained that no, Sandy died, but she loved Deb's blog and wanted to meet her. (I didn't say that I knew this because she expressed it in an email I was typing; I'm still not completely sure I believe that myself.) I did apologize if it creeped her out to be signing a book to a dead person, but she took it pretty well. She wrote "To Sandy. I'm so sorry I didn't get to meet you," which was just about perfect, and then we talked about orzo, a topic that was clearly more comfortable for her.

I'm incredibly pleased with the outing. I enjoyed conversations and the presentation, and came home with a cookbook I'm looking forward to using. The book has the same narrative style as the blog. I feel like I'm getting each recipe from a friend, after she's told me what she had for dinner last night and how much everyone liked it. Most important, though, I feel like I had the opportunity to give Sandy a gift, something I don't get to do much anymore. I'm thinking maybe we'll do a little cooking together.