Tag Archives: social work

The Annual Holding Breath World AIDS Day Free Book Promotion

I’ve decided to make a tradition that I actually care about, now that Thanksgiving is over (as far as holidays are concerned, Christmas, Halloween, and Valentine’s Day are the only ones I really love; don’t even get me started on how I feel about Columbus Day).  Last year, shortly after I published Holding Breath: A Memoir of AIDS’ Wildfire Days, I realized that it would be appropriate to give free Kindle versions of the book away for World AIDS Day (December 1st).

This year, the book will be free starting tomorrow (11/29/13), and the offer will be good through Sunday, which will be World AIDS Day.  After that, I won’t be giving it away again until next year.

So far, the book has a 4.6 out of 5 star rating from 21 reviews on Amazon.com (and another 5-star review on Amazon U.K.).  As usual, if you download the book (or buy the print version) and read it and feel like leaving a review, I’d really appreciate it.  Every one helps, and they’re fun to read (except for that one 2-star one…).

Here ya go (and then I’m done with the book giveaways!):

http://www.amazon.com/Holding-Breath-Memoir-Wildfire-ebook/dp/B009TV4CE6/ref=sr_1_1?s=digital-text&ie=UTF8&qid=1377225007&sr=1-1&keywords=holding+breath+bevilaqua

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A Birthday, an Anniversary, and a Book Sale

Today would be David’s (the man about whom I wrote Holding Breath: A Memoir of AIDS’ Wildfire Days) 66th birthday.  Although his life was very often something close to hell–perhaps something that he sometimes wished he’d never been born into (I don’t know that for certain, of course; he always struck me as remarkably optimistic, in spite of things)–I feel that his birth is also something that I should always celebrate in some way.  David changed the course of my life for the better, and permanently.  I sometimes wonder what I would have been like if I’d never met him; it’s not a pretty thought.

The following is an excerpt from the book about his birthday in 1989, six months before he passed on, and my realization a year later that it was approaching again, and that he was gone:

“I found an entry from 16 October 1989 that mentions his birthday.  Part of it got wet at some point and the ink ran, so some of it is illegible, but what I can put together of it says:

In six days it’ll be David’s birthday…short year ago that (I took him out) for lunch and he told me…about his life.  (We were supposed to) go see (the building’s owner) about his apartment, but it was pouring rain and (we didn’t think he should) stay out in it so I bought him an umbrella and he walked me to the PATH station.  I kissed him on the cheek and wished him happy birthday and he looked surprised, as I guess he should have been.  Then I went home and he went back up to the Marion Hotel.

Autumn’s got me thinking about him, too.  And the fact that I actually did get TB from him.  It’s stupid, but I almost like the idea that I caught something from him.  Any bond…

Today is also the first anniversary of Holding Breath‘s publication (no coincidence there), so this seems like a good time to put the Kindle version of the book on sale for a few days.  So, from today (21 October 2013) through Wednesday the 23rd, the price will be reduced from $3.99 to .99.  Once again, here’s the link to the book’s Amazon page (where you can also read the reviews):

http://www.amazon.com/Holding-Breath-Memoir-Wildfire-ebook/dp/B009TV4CE6/ref=sr_1_1?s=digital-text&ie=UTF8&qid=1377225007&sr=1-1&keywords=holding+breath+bevilaqua

Here’s a description of the book:

In 1988, recently out of a graduate Creative Writing program in New York City, Nancy Bevilaqua was an aspiring poet in need of a job. She answered a newspaper ad seeking caseworkers for people with AIDS, and, much to her surprise, got the job. She shouldn’t have been surprised; in 1988 AIDS was an epidemic completely out of anyone’s control beyond some toxic and ineffective treatments, and fear and misunderstanding of the disease were rampant. Very few people wanted to be in contact with people who’d been infected with HIV.

A year later, a 41-year-old heroin addict named David was assigned to her as a client. Something about him drew her to him, and in very little time the boundary between “client” and “caseworker” dissolved, and she fell in love with him. For the next eight months she lived with him in his Lower East Side apartment, caring for him and waiting with him for the inevitable end.

Before succumbing to the disease, David asked Nancy to write a book about him. Twenty-two years later, after going through an unexpected and very painful period of something she learned was called “disenfranchised grief”, she finally published Holding Breath: A Memoir of AIDS’ Wildfire Days, which is a loving account of her eight months with David, and the grief she’d had to hide for so long.

Hoboken, and the Feelies

I moved to Hoboken from Manhattan in 1987 with my best friend from college, Lynn; she had gone over to the town one night with some other friends and seen a band at Maxwell’s, and her single evening there had convinced her that it was imperative that we move there as soon as possible (she also told me about a bar across Washington Street from Maxwell’s where draft beers cost 35 cents, and that struck both of us as another perfectly good reason to live there).

At that time, Hoboken was a relatively inexpensive alternative to Manhattan; it hadn’t quite been gentrified yet, and it seemed that almost everyone who lived there (aside from the mostly-Italian “old-timers”) was an artist or musician of some sort, and under the age of 30.  I loved it (and still do, and I felt terrible about what happened to it, and the people there, when Sandy blew through).  In Holding Breath, I included an entry from my 1988 journal about “…my apparent moderate, and inexplicable, notoriety in this weird town full of people who refuse to ever grow up.  I do love Hoboken, and I plan to for a while.”  (In retrospect, it was no great feat to have any kind of “notoriety” in a mile-square town.)

I spent almost every night out at Maxwells, and various other bars around town (for a while I tended bar at a place that was, at the time, called the Beat ‘n’ Path, and had much too much fun doing it). Maxwell’s was always my favorite place; they had (and still do) a little room in the back where great indie bands came to play.  It was cheap to get in, and very often I’d get in for free because I had friends who worked the door–a good thing, because I was always broke back then.  As far as I was concerned, it was, and still is, the best place to see live shows.

At the time, my absolute favorite band was the Feelies.  They’re a New Jersey band from Haledon, but I always kind of thought of them as a Hoboken band.  I saw them every time they (or one of their various permutations) played Maxwell’s.  During the day, as I made my way through Manhattan on my way to visit clients in the hospital or in their homes, or to see David, their music was often playing on my Walkman.  It’s hard to think about that time in my life without thinking about the Feelies, and that’s why I’ve included the following song, “On the Roof,” on my playlist for the book:

http://www.youtube.com/watch?v=3w2sb01oRT0

Understood

Early on in the book, I write about one of my first clients, Margaret–“a frail crack addict who really–like so many of the others–wanted to be liked.”  She was a tiny, sweet, energetic little thing who was really happy and excited to be getting a room in a crummy SRO hotel, and to be going out shopping with me to get a few things to make it more comfortable.  She passed away shortly afterwards.

That part about “wanting to be liked”–wanting to be understood as being someone who was more than the stereotypical image that many of us have of being a “crackhead,” or a “drug addict”, or a “homeless person”–is an important part of the book.  It was absolutely true of David, who, as far as I can tell, had very rarely in his life had a sense of being understood beyond those and a few other labels (one of the last of them, of course, being “junkie with AIDS”).

Almost without exception, the people I worked with (David included, obviously) always seemed very happy when they were given a chance to talk about their lives outside of those labels, their childhoods, their interests, their dreams…anything, really.  Something in them seemed to change when they realized that someone actually wanted to hear their stories, or when someone looked them in the eye, shook their hands, and asked them about themselves beyond the necessities of the paperwork.

Even now, when my son gives some money to a homeless person on the street, I tell him to look him or her in the eye and, at the very least, say a few words–let him or her know that he actually SEES them.

That’s why the Animals’ “Please Don’t Let Me Be Misunderstood” is on the playlist for Holding Breath: A Memoir of AIDS’ Wildfire Days.  Here’s the link to the song (ignore the suits! 🙂 ):

http://www.youtube.com/watch?v=d2FT4FprxDg

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

Shelter

As Bob Dylan’s “Shelter From the Storm” is on the book’s playlist, and as it’s so in keeping with recent events up north, I was going to post a link to it here today.  However, I’m not able to find a link to a Dylan version of the song (I’m guessing it’s a copyright thing).  The song–particularly its opening lines–is one of quite a few that remind me of my time with David, particularly the first few weeks after we met, and also just in general of the AIDS epidemic at the time in New York:

“Twas in another lifetime/One of toil and blood,/When blackness was a virtue/The road was full of mud./I came in from the wilderness,/A creature void of form./’Come in,’ she said, ‘I’ll give you/Shelter from the storm…/In a world of steel-eyed death and men who are fighting to be warm/’Come in,’ she said,’I’ll give you/Shelter from the storm…”

As his caseworker, it was my job to find David, who was homeless at the time, a place to live.  What I didn’t know on that day when he first walked into my office– strung-out, wet, feverish, and just about at the end of his rope, I think–was that I would be sharing that shelter with him until the day he died, eight months later.

1989 does seem like another lifetime now.

(Holding Breath: A Memoir of AIDS’ Wildfire Days can be found on Amazon.com 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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