Tag Archives: disenfranchised grief

Depressed at Disney

A few minutes ago I happened to look at my travel blog (between 2001 and about 2009 I was a relatively successful freelance travel writer; the blog is for the most part made up of travel narratives I’d written that weren’t quite commercially-oriented enough for most travel publications, but are still my favorites), and at a story I wrote back in 2006.

The story, which is called “Depressed at Disney World”, is about a press trip I took to Orlando just when my newly awakened grief for David had started to surface, and I was on the brink of a kind of emotional free-fall.  In the story, I simply refer to David as “my friend.”

It occurred to me that this might be a good place to share it.  Here’s the link:



Dancing Barefoot

I think I kind of fell in love with Patti Smith during my freshman year at Reed College.  I listened to her album Horses over and over; it was a revelation to me–an 18-year-old poet newly on her own, trying to find the things that felt right to her (that process became considerably easier once I got to Reed).  Patti felt right.  I had an oversized man’s blazer-type jacket (which I often wore over my long hippie dresses, or with a big button-down white shirt) on which I pinned a little horse–just like Patti on Mapplethorpe’s cover for the album.  I was a little obsessed, but hey–I was 18.  I still love Patti.

I included her song “Dancing Barefoot” on my playlist for Holding Breath: A Memoir of AIDS’ Wildfire Days, because something in the song’s lyrics reminds me of my regrets about my days with David, and of something I learned from those regrets, years later.

In spite of the fact that I risked my job by more-or-less moving into David’s little Lower East Side apartment with him and trying to care for him until his death eight months later, there were things that I held back–things that I wish I’d done, but didn’t (the kiss that he offered, and that I refused early on in our relationship, is like a “ground zero” for the memoir, and for my own memories).  Yes–he had full-blown AIDS, and people will argue that that was reason enough not to kiss him, but I don’t think it was MY reason (I also knew that I wasn’t going to get HIV through a kiss).  I was just confused, and holding back because of that constant, nagging feeling that I was doing something wrong by being there with him at all.  I will always wish that I had, at the very least, accepted his kiss.  That “holding back” continued in many other ways during those eight months.  These days–in large part because of my realization of what was lost as a result of my fear of “doing the ‘wrong’ thing”–I am somewhat braver, and less beholden to some idea of what people might think (although I’m still a work-in-progress in that regard as well).

As far as I can tell, the song “Dancing Barefoot” is about that blessed letting-go, and that willingness to go with what one feels in her heart, rather than slavishly following “conventional wisdom”, dogma, random “rules” set by people who simply have different ideas about things, prejudices (my own subtle and barely acknowledged ideas about “addicts” at the time played into my dealings with David as well–at least at first).

It’s a truly beautiful song.  Here it is:


(Holding Breath: A Memoir of AIDS’ Wildfire Days is available at:http://www.amazon.com/dp/B009TV4CE6)

Solitary Souls

I know that I wrote in an earlier post that I wasn’t going to post any more excerpts from the book, but it’s Halloween, and it made me think of a Halloween (I was, in fact, in Mexico at the time, so it was more properly one of Los Dias de los Muertos–Days of the Dead, or the Mayan Hanal Pixan) six years ago, when I was just starting to experience the delayed grief I’d suppressed since 1990.  (The quote I use in the excerpt is from a book called Hanal Pixan Yesterday and Today: The Mayan Ritual of the Dead, trans. David Phillips.)  So–one more excerpt:

“…Around that same time, I was sent to Mexico for a magazine assignment.  By coincidence, I arrived on October 31st, the first of the Days of the Dead.  On my second day there, I posted:

The people here create altars for their dead on these days, setting out candles, images of saints, photographs of those who have died, cigarettes, tequila, sweets, the things the things they loved when they were alive. It’s believed that the souls of the dead return and partake of the essence of the food and drink left out for them, leaving what’s left for the living. Yesterday someone gave me a book about Hanal Pixan, the Mayan ritual of the dead, and I found this passage:

‘…it is also common to set up an altar to the solitary soul, dedicated to all those deceased who have no one to remember them on Earth, or who have no known relatives, or relatives who showed no interest in them. It might also be…the sick who were abandoned by their relatives…’

Well, my solitary soul, I’ll need to set up your altar here, in a room at the Ritz-Carlton in Cancun, overlooking the sea. There are bottles of water here, a bowl of fruit, a red flower, and a warm breeze from the sea blowing the curtains around. If you come back, I’ll be waiting here, in a place nothing like the one you left—the kind of place we used to talk about visiting together.

These past few weeks, I’ve been willing to believe in almost anything.”

In the six years since I wrote that, I’ve gone from being “willing to believe” to absolutely certain, and I’m no longer afraid of death.

(Holding Breath: A Memoir of AIDS’ Wildfire Days is available at: http://www.amazon.com/dp/B009TV4CE6

A (Somewhat) Different Kind of Grief

As I said, I don’t want to post too many excerpts from Holding Breath: A Memoir of AIDS’ Wildfire Days here, and the one that follows will be the last (the book is available at: http://www.amazon.com/dp/B009TV4CE6).  However, what I’ve written about here is a very important part of the book; when I learned about what “disenfranchised grief” is (the definition here is by Kathleen R. Gilbert, Professor and Associate Dean at Indiana University, and is the best one I’ve come across), it finally explained to me why the grief I’d suppressed to a great extent after David passed away came back to hit me like a hurricane sixteen years later.  It may be useful to others who experienced losses in similarly “unacceptable” relationships, so I wanted to post it for them:

“Nor did I have any idea that there was a name for what I’d somehow believed was peculiar to me, and that, especially in the 1980’s and early 1990’s, there were many people who had found themselves in the same position.  The term for it is ‘disenfranchised grief’; I don’t remember how I came across the definition online, but reading it gave me, for the first time, an understanding that at least I wasn’t alone in my transgression of the rules, and that I could perhaps at least start to forgive myself for prematurely laying my grief aside and moving on at the time:

Disenfranchised grief is the result of a loss for which they do not have a socially recognized right, role or capacity to grieve. These socially ambiguous losses are not or cannot be openly mourned, or socially supported. Essentially, this is grief that is restricted by “grieving rules” ascribed by the culture and society. The bereaved may not publicly grieve because, somehow, some element or elements of the loss prevent a public recognition.

Some of those “elements” might include a “relationship that is not socially recognized” (for example, partners in a lesbian or gay relationship), or a manner of death considered to be “fault” of the deceased (AIDS, suicide, drug overdose, etc.), or the simple fact that the deceased was not the legal spouse of the person left behind…

The description continues:

Because of the lack of social recognition, disenfranchised grief is a hidden grief and this “hiddenness” can paradoxically increase the reaction to loss…It can intensify feelings of anger, guilt and/or powerlessness, thus resulting in a more complicated grief response. Rituals may be absent or the grievers may be excluded from rituals…

Disenfranchised grief may lay hidden for years, only to be triggered by later losses…

That about covers it, doesn’t it? There were all manner of bereavement support groups around at that time, but none, as far as I know, were for AIDS Caseworkers Who Fell in Love With Their Drug-Addict Clients. There wouldn’t even be a good acronym that you could make up for that.”

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