Victoria Noe's Blog, page 15

Memorial Day and Friend Grief

Next Monday is Memorial Day. You know what that means: social media filled with pictures of military cemeteries awash in tiny flags. You’ll be asked to like, share and retweet for the entire 3-day weekend. Big sales at the mall. Politicians who routinely vote against veterans’ interests will shower the military with praise, only to forget about them the next day

There are, unfortunately, a lot of fundraising scams out there and many are veteran-related. When I wrote Friend Grief and the Military: Band of Friends I wanted to have a charity partner: a reputable nonprofit that would benefit from sales of the book.

I found one in Military Outreach USA.  Their mission is to empower a Military Caring Network to serve those who have served in our nation’s military. They work with thousands of faith communities across the country to achieve their goals.

Military Outreach USA receives 25% of the sale price (not profits) of all print and e-book versions of my book.

In addition, here are a couple more organizations that I’ve vetted:

Stop Soldier Suicide. You’ve probably heard the often-quoted statistic of 22 veterans and 1 active-duty military commit suicide every day. That’s not even close to the truth: the study these numbers are based on included data from only 23 states. The real number is closer to 50. If you want to make sure that Memorial Day doesn’t have to include veterans who died after returning home, check out their “22 Miles in 22 Days” challenge.

National Veterans Art Museum. The photo you see here is of their most famous exhibit, “Above and Beyond”, recently installed at the Harold Washington Library in downtown Chicago. It had been in storage for several years; the weight of the dog tags limits exhibit opportunities. The display of 58,307 dog tags is the only memorial is the only memorial other than The Wall in Washington, DC, to name all those who died in Vietnam.

Don’t be like people who post pictures of military cemeteries, but do nothing to actually honor those who buried beneath the headstones and flags.

Don’t spend the weekend taking advantage of sales without taking the time to reflect on those brave men and women who are mourned on Monday and every day.

All of these organizations deserve your support. It doesn’t have to be a big donation; every dollar helps to honor those who died and support those who came back. There’s no better way to spend Memorial Day.

 

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Making the Most of Conferences: #BEA16 Edition

Four years ago, when we knew our daughter would be attending The New School University in NYC, I looked forward to combining graduation with Book Expo America. Wouldn’t you know? BEA moved to Chicago (where I live) this year. If you’re reading this, I’m in NYC preparing for graduation later this week. Because of the logistics involved in that and several other things, I spent only one day at BEA last week. So I wanted to share how I managed to get almost everything done that would’ve normally taken all three days.

Luck. Because of the change in venue, a number of people I usually meet up with were not in attendance. The number of attendees, as well as the square-footage of the exhibit hall, was down. And while I missed some of my colleagues and exhibitors, I was able to meet with everyone on my to-do list except one person who wasn’t working her booth that day.

More luck. I received an email from the local self-publishing author group I belong to, announcing that Housing Works needed volunteers for their booth at BEA. Housing Works is the charitable partner of BEA. An off-shoot of ACT UP/NY, they are committed to ending the AIDS epidemic and homelessness in NYC. In fact, they hope to create a duplicable model for the rest of the country. To support their programs, they run 13 thrift shops and a fabulous bookstore/café in Soho. I’m a member of both ACT UP/NY and Housing Works, so I was thrilled to spend the morning helping in their booth. Yes, we were the only exhibitors with free condoms.

Planning. Attending Book Expo America is no different than attending any other conference or convention: you need a plan. Browse the event website or brochure and ask yourself, “Why would I want to attend?” It doesn’t matter if it’s your first or tenth time attending. Unless you’re okay wasting time and money, you need to be clear about your goals. Make a list. Seriously. Then figure out what exhibitors and sessions will further your goals. Match then up on your list and print it out or keep it on your phone.

Caffeine. I don’t do coffee. I’m a tea drinker, mostly green tea. I made sure my first stop – even before registration – was the Starbucks in McCormick Place. Always buy the biggest drink you can at Starbucks. You’ll spend too much time in line to not buy a venti or trenta.

Comfortable shoes. My Fitbit was very happy that day, and my feet didn’t suffer. Also, you can’t bring a rolling suitcase onto the exhibit floor. Bring one anyway and keep it in the coat check area to fill up with books and flyers so your back doesn’t give out.

Business cards. Hand them out to everyone you talk to. When someone gives you their business card, be sure to take a moment to write on the back of it: how you met, what you talked about it. Nothing’s more frustrating than unpacking after an event, pulling out a business card and wondering, “Why do I have this card?”

Serendipity. The one thing you can’t plan for, but it will always, always happen. Last year I shared a table at the Starbucks in the Javits Center with a woman who asked me to submit an article to her magazine. This year I ran into an agent I’d talked to at another conference’s pitch slam last year. I hadn’t actually pitched anything; I was just looking for feedback on the format of a book I was considering writing. He was so excited about the concept he asked me to keep in touch. I won’t lie: I hesitated to approach him. But I did, and we’ll meet up again at that same conference this August. I have a proposal ready for my book on straight women in the AIDS community, but I’m far away from having a sample chapter. By the time I see him again, I just might have that, too.

So, like I said, I accomplished most everything I wanted to that day. Serendipity also got me contact with a woman to interview for my next book and two invitations to speak at libraries. Neither invitation is likely to have been extended had we not met face-to-face. And last, but not least…

Follow-up. You’ll find that the success of attending a conference is almost 100% in the follow-up. Those business cards you collected? Email those people within the week and refer to your meeting. Use “X Conference Followup” in the subject line of your email, so they know right away who you are. Don’t wait for them to contact you. Be assertive without being aggressive. Your professionalism will be remembered.

So now I have emails to send to the people I met as well as the one I missed. I can’t wait to find out if this conference was a success.

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Friend Grief and Dying Matters

“Would you tell me if you were sick?”

We were having one of our occasional lunches in New York, catching up on work and our families. I told him about a conversation I’d had with my best friends from high school: if we were terminally ill, would we share the news with each other?

“I’m not sick,” he insisted, a little horrified that I might think otherwise.

“I didn’t think you were. But would you tell me?”

“Why wouldn’t I?”

The stories in the Friend Grief books are all unique, but ultimately fall into two categories: people who were prepared for their friend’s death and those who were not.

Those who had some advance knowledge were not exempt from grief. But they tended to suffer less survivor guilt. They knew their friend’s time was short and although there was nothing they could do to save them, there were ways to make a difference.

I’ve shared stories of people who took their friends to doctor appointments or sat with them during chemo. They continued to do all the things they normally did: go out to dinner, travel, party. Sometimes all you can do is sit with your friend, to be present so they’re not alone. It doesn’t change the outcome, but it deepens the friendship in unexpected ways.

This week is Dying Matters Awareness Week. Based in the UK, the events shine a light on the need for people to discuss their final wishes with family and friends. No, of course, no one wants to talk about dying. But most of us have seen people who suffered needlessly: in pain and often in isolation. We’ve seen people whose families scrambled to provide support because they never asked what their loved one wanted. We’ve seen friends blindsided by the helplessness of watching their friends suffer, or the pain of being shut out by family members.

I’m not talking about writing a will. Most people don’t have one, don’t think they need to bother. Even a famous artist like Prince didn’t have a will. No one wants to think about the inevitable, but they don’t consider the financial, legal and emotional damage left behind by that kind of resistance.

So I ask you to consider “Would you tell your friends if you were terminally ill?” First think about it yourself, then bring it up with your friends and family. I won’t lie: it’s awkward. You will encounter resistance, especially from family who can’t bear the thought of losing you. Don’t be surprised if your friends feel the same way.

Sometime after that initial conversation, we were having lunch again in the same booth at the same restaurant when he turned to me with a little nervousness and said, “I had chest pains for three days.”

My first thought was “I’m not going to cry.” My first response is not printable, but along the lines of “Why did you wait three days to see a doctor?” It turned out to be something quite benign so we could laugh about it. But I know there will come a day when one of us will say something not so funny.

That’s because we made a pact to share our health news with each other. Making that pact sparked other surprising conversations. I can’t think of anything that’s been left unsaid between us. That has been the case with other friends, too, opening up decades-long friendships to a deeper intimacy. It has been an unexpected and beautiful benefit.

So, take a deep breath and think about it. You don’t have to do it today, but don’t put it off forever. You don’t have forever. And trust me:  it makes for interesting conversations over calamari and vodka martinis.

 

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6 Things I Learned Writing the Friend Grief Books

         

As the Friend Grief series comes to a close, I started feeling a little pensive. It’s been a remarkable journey I could have never predicted, much less planned. So I wanted to share some of what I’ve learned, one thing for each book from last to first:

Friend Grief and Men: Defying Stereotypes. I began interviewing men secure in my sexist view that getting stories out of men would be like pulling teeth. I was wrong. So wrong. Incredibly wrong. None of the men I interviewed clammed up, though a couple were slow to open up. Some wanted to be interviewed. Some wanted to be interviewed a second time. All wanted to share the stories of the friends who changed their lives.

Friend Grief in the Workplace: More Than an Empty Cubicle. As companies begin to consider pet bereavement leave for their employees, most still have no policy for people who want paid time off when a friend dies. Hmmm….maybe that should change?

Friend Grief and the Military: Band of Friends. I had never heard of ‘moral injury’ until I wrote this book. It’s a subject that needs much more attention, because it’s a much bigger challenge than PTSD.

Friend Grief and 9/11: The Forgotten Mourners. The more things change, the more they stay the same. Non-family members have been traditionally shut out of the official observances at Ground Zero in NYC. In the past year or two, survivors are finally being included. But other friends and colleagues are still not included – nor can they watch or hear – the naming ceremony. I know. I tried.

Friend Grief and AIDS: Thirty Years of Burying Our Friends. I couldn’t stay away from the AIDS community after I wrote this book. I was back in, though not as a fundraiser this time, but in some ways much more effective. Without this book, I could not begin to consider writing Fag Hags, Divas and Moms: The Legacy of Straight Women in the AIDS Community.

Friend Grief and Anger: When Your Friend Dies and No One Gives a Damn. Sometimes this book makes me cringe because it’s not as well-written as I would’ve liked. But it kept the promise I made to my friend, Delle Chatman, almost seven years earlier: to write a book about people grieving their friends.

Delle, like a few others in my life, saw something in me that I could not see. Something I still don’t see very often. But I didn’t want to disappoint her, even after she died, not that she would let me. Now and then I could hear her voice, clearly exasperated: “If you’d write the damn book you wouldn’t have to worry about that.”

Once the first book came out, I stopped hearing from her in that particular way. But she’s still with me: the postcard she sent me from Paris that sits on my desk, the books she wrote that I cherish, the scarf I carry when I need courage.

At the party after her memorial service, goodie bags were available: blue paper bags with a photo of Delle on the outside and one of her signature scarves inside. I remember standing over the table of bags considering my choice. That’s it in the photo at the top of this page. Almost ten years later, it’s beginning to fray a bit, but I don’t care. I wear it or tie it to my bag when I have an important interview or meeting, when I attend writing conferences, when I just need to hang onto her.

“You gotta have friends,” as Bette Midler sang long ago. Without them – especially without Delle’s inspiration – I wouldn’t be where I am today.

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The End. But Not The End.

There it is. Yeah, the cover of the final book in the Friend Grief series.

Do I like it? Oh, yeah, I like it a lot. My cover designer (Rebecca Swift) never steers me wrong.

But still…it’s the last one. It’s the last book in the series. I’m about to hit “send” on the final edits, so next week it goes to the formatter. I had planned on it coming out this month, but the universe conspired against me. It’ll be out in early May.

The end of the series does not mean the end of my weekly blog. Not by a long shot. I still have plenty to say about grieving the death of a friend. And to be honest, it’s not completely the end. Here’s what’s coming later this year:

All the books will be out on iTunes.
The series will be bundled and available as a set (e-book first).
The series will come out as an audio book (though I’m not sure yet if individual titles will be audio books).

And remember, if you want to get the e-book of Friend Grief and Men: Defying Stereotypes FREE, just sign up for my email newsletter in the upper-right hand corner of this page.

So, the end. But not the end. It’s been a wild ride that has changed my life. And I’m not done yet.

Stay tuned.

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Working on Two Books at Once

winghill.com

(Or, “Who Thought That Was a Good Idea?”)

Someone asked me recently what I was working on, and after I answered, he said “You’re working on two books at once?” I’m not sure if he was impressed or horrified.

I am working on two books. I have been for months. And while they are very different, I’m not sure I’d recommend it to any of my writer friends. It’s exhausting. The only saving grace, I think, is that I have not been doing the same thing with each book.

The first one – Friend Grief and Men: Defying Stereotypes – is in the final stages. I’ve been deep in the editing for the past few weeks, deleting and adding stories as well as polishing up what I’ve already written. I love my editor. She constantly reminds me “Not everyone knows what you know.” That’s a good mantra for me when I’m explaining situations in my books. The cover is approved (my newsletter subscribers will see it tomorrow) and the marketing has begun in earnest. I’ve requested permission for quotes and only have one more to confirm. There will be a Goodreads giveaway starting next week in addition to related freelance articles appearing online and in print. I’m lining up book signings and radio appearances.

The second one – Fag Hags, Divas and Moms: The Legacy of Straight Women in the AIDS Community – is in the early stages. I have not even begun to write, although I’ve written some blog posts and freelance articles on the topic. For months I’ve been networking in the AIDS community to identify women to interview and stories of their involvement. I’ve found archives around the US I need to access, and have begun to schedule interviews beginning in June. My crowdfunding continues on the New York Foundation for the Arts website, because the costs of traveling to do the important research are fairly substantial (and you can get a tax deduction). I feel a tremendous sense of responsibility to get it right, so I can’t skimp on the research.

As you can see, I’ve been working on different things with each book, so I think that helps conserve the little grey cells. It certainly helps my sanity.

The book about men is generating some good buzz, in part because people are curious about why I chose it to end the series. Sorry, you’ll have to read the book to find out why.

The other book is also generating a lot of interest, not just in the US; some of my research suggestions have come from the UK. Late this year I’ll be in London to speak at two or more events, thanks to a small grant from the Chicago Department of Cultural Affairs and Special Events, and I expect to do some research and interviews while I’m there.

It will not surprise you to hear that my brain’s a little foggy these days. There’s a lot going on, and although it’s sometimes exhausting, it’s all good. I hope you’ll continue with me on what’s proving itself to be a wild – but fun – ride.

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Men Need a Language to Grieve

The late Steve Montador, whose suicide inspired his friend.

In her book, When Men Grieve: Why Men Grieve Differently & How You Can Help, Dr. Elizabeth Levang suggests that men lack a language for grief. Literally.

I’m old enough to remember when Jackie Kennedy was criticized for not crying in public after her husband’s assassination. Women are expected to cry, wail, talk about their loss. She didn’t, and her behavior was looked at as unfeeling. That she was recuperating from the trauma of seeing her husband shot dead in front of her was not necessarily a good excuse. Her insistence on soldiering on, keeping commitments, and doing everything with remarkable self-control and grace was not the type of behavior expected in women. It was, however, what we expect from men.

In the course of writing the Friend Grief books, I’ve read about and interviewed men who were caught in that sexist expectation. Some, as they wiped away tears, admitted they’d never told anyone before what they’d just told me about the profound grief they felt for their friends. They hadn’t shared because no one understood or was willing to listen.

I assumed early on that having a master’s degree in speech and dramatic art rather than psychology would be a disadvantage. I was wrong. It turned out to be a huge asset. I wasn’t interviewing people to pass judgment or diagnose or prescribe. I was there to listen. And men need someone to listen to them when they grieve.

They need someone who won’t insist that they behave a certain way or fulfill specific expectations.

Men are just as confused, angry and distraught as women when a friend dies. And they deserve the freedom to feel that way: not just when they’re alone, but with others willing to listen.

It doesn’t mean they  don’t want to take charge or “do” something. Daniel Carcillo, on his retirement from the Chicago Blackhawks, started a charity in memory of his friend, Steve Montador. It’s more than that: it’s the need to grieve in whatever way feels right. Who wouldn’t want that?

One of the men in the next book admitted, “I think I’ll have a harder time with (my best friend)’s death than with my own.” Men’s friendships are deep and wide and crucial to their journey to understand what it means to be a man.

It’s time we all acknowledge that, and give men the opportunity to grieve their friends as they see fit.

 

 

 

Would you like a free e-book of Friend Grief and Men: Defying Stereotypes? Just sign up for my email newsletter in the upper right hand corner of this page.

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Finishing Up Friend Grief

Jim Eigo, one of the men in the final Friend Grief book

I hope you enjoyed my four amazing guest bloggers last month: Nancy Duncan, Rosa E. Martinez-Colon, Eileen Dreyer and Andrea Johnson. Their perspectives as straight women in the AIDS community were unique and inspiring. If you missed any of their stories, I hope you will check them out. They’re just a sample of the formidable women you’ll meet in Fag Hags, Divas and Moms: The Legacy of Straight Women in the AIDS Community. (By the way, you can support the extensive research for the book here.)

In a few weeks, the final book in the Friend Grief series will launch – Friend Grief and Men: Defying Stereotypes.

In addition to the book itself, I’ve posted a Pinterest board where you can see photos and videos of the men whose stories are featured:

A former actor turned rabbi reflecting on the importance of his friends.
A professional hockey player whose friend’s suicide prompted him to start an organization to support former hockey players in need.
Long-time survivors in the AIDS community, whose needs are very similar to those of military veterans.
A sportswriter whose best friend was the first person close to him to die.
And more…

Everyone who receives my newsletter gets to read the e-book first – free. If you’re not already a subscriber, just look at the upper-right hand corner of this page and sign up (be sure to respond to the confirmation email). Every Wednesday you’ll receive a short, sweet, and hopefully entertaining email with information subscribers learn before anyone else.

In the coming weeks, I’ll reveal the cover (again, email subscribers will see it first), run a giveaway on Goodreads and share freelance articles related to the book.

And while it’s sad to complete the series, I’m excited about the way it’s ending. This book really completes the circle, as well as the promise I made to Delle Chatman ten years ago.

As I’ve said many times over those years, this is not what I thought I’d be doing at this age. Let’s be honest: it’s not what I thought I’d be doing at any age. But it’s too late now. That’s what happens when you have friends who believe in you.

 

 

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Women’s History Month – Andrea Johnson

Andrea Johnson

My final guest blogger for Women’s History Month is Andrea Johnson. As is often the case, we’ve never met IRL (in real life) but our paths have crossed. She found out she was HIV positive in 2007, when she was tested after learning of her ex-husband’s affair. Isolated and depressed, she made the decision to devote her life to reaching out to women most at risk or living with HIV. You will not find a more passionate advocate.

 

“How do I LOVE a woman living with HIV without acquiring HIV?”

It’s a question I get all too often from men that are HIV negative that find out a woman he may be interested in is HIV positive, or in better terms, is living with HIV.

HIV is the virus that causes AIDS. You cannot get AIDS or full blown AIDS. In order for a person to evolve into an AIDS status, they would have had to have acquired HIV first and may not have known their status, because they may have never been tested or treated for HIV.

Just because a person is living with HIV, does not mean they will evolve to an AIDS status. With modern science around HIV and AIDS, a person living with HIV that takes care of themselves, i.e., taking their medications, seeing their doctors regularly, etc., will more than likely have little to no chance of evolving to an AIDS status.

In addition, a person living with HIV can now reach an undetectable viral load (obtained when a person living with HIV takes their medication(s) properly and their viral load becomes so low or non-existent, that the virus becomes undetected in their system). This gives their HIV negative partner about a 0% chance of acquiring HIVeven if the condom broke during sex. Also, with the long overdue PrEP (Pre-Exposure Prophylaxis) medication, which is one of the big scientific buzzes, at present, in protection against acquiring HIV, persons in mixed-status (or sero-discordant, meaning one partner is HIV+ and the other is HIV-) relationships, that have open, honest and compassionate communication, have reported that the fear of contracting HIV is almost non-existent. Key words: “HONEST COMMUNICATION”.

So, how do you love a woman living with HIV without acquiring HIV? Have you been reading? I spelled it out for you in the previous paragraph!

A woman living with HIV is a person. She is beautiful, she is awesome, she is all that and then some. Her health condition is one that is manageable and in many cases, kept in check to not transfer the virus to her partner.

Unfortunately, the stigmas that are associated with HIV can make a woman living with HIV feel a range of emotions about her desirability, and some women may compromise too much or over-conform to her partner’s notions of how the relationship is meant to look.

You love your woman who is living with HIV by being aware of the potential for these feelings and inviting communication about them or about the potential for them to arise. You educate yourself, you ask questions, you go to the doctor with your woman, you get tested during your routine doctor visits to know your status. You know your options, you know your choices, but most importantly, you know your heart. If you know the woman you are interested in is living with HIV, respect her and know that she is open and honest with you.

The question now is, “How do YOU make a woman living with HIV happy?”

I fell in love with someone that had a question like this a couple years after I acquired HIV. I was still trying to figure out the answer to the question myself, and had I known then what I know now, the man I fell deeply in love with most likely would have been a beautiful part of my life today.

 

Andrea Johnson, is the Founder of GIRL U CAN DO IT, INC. aka GUCDII, a non-profit community based organization that provides comprehensive health and awareness education and prevention services for disadvantaged youths, young adults and families. She is the host of a social justice radio show called Real R.A.P.P., and more recently, she is the only Black Woman living with HIV to target major magazines, talk shows and newspapers with her HIV anti-stigma campaign called RED, WHITE & U HIV Anti-Stigma Photo Shoot and Campaign, which highlights women living with HIV or AIDS. Additionally, she is the newest Board Member to the University of Pennsylvania’s Mental Health AIDS Research Center (PMHARC) and works full time in corporate America.

Andrea’s helping spirit has inspired others living with HIV to want to live and dream about their own personal growth and success for their lives. She has received numerous community and dignitary honors and awards and remains humble and chooses to continue to work on ground zero where she sees that she can be the most help in helping to end epidemics that continues to plague our communities.

Her biggest personal accomplishments to date are the births of her children and her grandson. She is a returning college student after a 23 year hiatus to finally fulfill her dream of becoming a human rights attorney to further help in defending the rights of those that cannot defend themselves against injustices within our global society.

You can contact her at: www.girlucandoit.org

Instagram: GIRLUCANDOIT

FB: Andrea Johnson

Twitter: Andrea Johnson

 

To learn more about my book – Fag Hags, Divas and Moms: The Legacy of Straight Women in the AIDS Community – and how to support it, check out its page. Support the project during Women’s History Month with a donation of $25 and receive the e-book version of the book when it comes out in 2017.

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Women’s History Month – Eileen Dreyer

Eileen Dreyer

I’ve known Eileen Dreyer since the Beatles were still together, so that’s a long time; in fact, we saw them perform. While I was raising money for AIDS organizations in the late 80s and early 90s in Chicago, she was on the front lines in St. Louis. The anger is still there, as it is for many of us. Her story continues Women’s History Month:

 

I hadn’t realized how angry I still was until I watched The Normal Heart. Seething angry, unresolved angry. Wishing there were someone I could scream at angry. Because I was there. I saw the beginning of the epidemic. And I’m not sure I’ll forgive us for how we faced it.

I worked a trauma center back in the 80s. Not in New York or LA, where the epidemic hit hardest: St. Louis. We had a gay community. You know, the ‘artsy’ part of town where couples were rehabbing historic houses and turning neighborhoods. The area was still conservative enough that it took courage to live as an openly gay person. I remember doctors and teachers and nurses who hid in plain sight rather than lose their jobs or families. I remember that others left rather than risk it. But those who remained always balanced on an uncertain edge.

And then the whispers started. There was a new plague, untreatable, terrifying, communicable. Through sex and needles, we heard, but nobody was quite sure, except that gays were spreading it. Nobody wanted to take a chance. In the ER, where we’d always taken a perverse pride in ending a shift spattered with blood like serial killers, suddenly we were wearing gloves to start IVs and face shields to prevent spatter. Getting stuck with a needle provoked panic. Where we’d never really feared contagion before, suddenly danger lurked everywhere.

I remember the first time I saw a Kaposi Sarcoma, like an obscene leech on a thin back. I remember standing with a group around the x-ray viewbox looking at the lacework pattern of pneumocystis pneumonia, and knowing before the patient did that he was going to die, and he was going to die horribly. I remember that he recognized his diagnosis by the looks on our faces. I remember that most of them knew their diagnosis long before we did.

And I remember what inevitably happened after, when the diagnosis could no longer be denied, because the rest of the world panicked. If you think Ebola was bad, you have no idea. And like any panicky animal, it turned on the victim. The blame was vicious, the fear pervasive. I remember how hard we struggled to find help for that young man. Nobody wanted to touch him, you see. They didn’t know if just touching him would infect them (and to be clear, what I do not remember is anybody contracting AIDS from patient contact). Some hospitals wouldn’t admit an AIDS patient. After a while, of course, the insurance ran out or simply didn’t cover the disease, and the patient was exiled to the charity of the city hospital, which is little charity at all.

An AIDS diagnosis demanded full isolation. And depending on who was taking care of the patient that often meant that he was sentenced to the silence of an empty room. Nobody wanted to touch him. Some outright condemned him, because, you know, he deserved what he got. I used to take care of boys with hemophilia. They came into the ER for transfusions. Every one is dead. Exactly how did they deserve that death? How did anyone?

I can still see some of my patients: skeletal, eyes fever-bright, the fear sweating off of them as they waited hour after hour for someone, anyone to care for them. I can remember the phone calls to other hospitals or ambulances that refused transport, or worst of all, funeral homes that refused to take that boy’s body, as if he didn’t deserve a decent burial. And never will I forget making phone call after phone call for a desperately sick boy who only wanted to talk to his father, only to be hung up on time and again. “Don’t call me again.” or “He deserves it.”

Let me be clear: Nobody deserves it. No single person on earth deserves what those young men and women went through before we knew how to treat AIDS. Before we recovered our compassion. Before one young woman who married into a royal house reached out her hand and took hold of a dying young man and proved that we could still be human and kind and faithful to our children and friends and brothers and sisters, no matter what they suffered – because of what they suffered.

Here’s what I remember most, though. And it didn’t even occur to me until much later. What I remember is that the gay community responded much as the Vietnam veteran community responded to the plague of PTSD. When no one else knew what to do with them, how to think about them, how to support them, how to ease their pain and grief and loneliness, when no one came forward to care for them, they took care of each other. I’m still angry that the rest of the world failed in their humanity. I’m not sure I’ll ever forgive us. But I will always remember the grace of those friends and lovers and strangers wrapping their arms around my patients and letting them know that no matter what they faced, they would not do it alone.

 

New York Times best-selling author Eileen Dreyer has published 41 fiction novels in most genres and will soon publish her first non-fiction book, Travels with Dave, an account of the pilgrimage she and friends have been making to take the ashes of a friend around the world. A retired trauma nurse, she still lives in St. Louis with her family.

 

To learn more about my book – Fag Hags, Divas and Moms: The Legacy of Straight Women in the AIDS Community – and how to support it, check out its page. Support the project during Women’s History Month with a donation of $25 and receive the e-book version of the book when it comes out in 2017.

 

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