HIV/AIDS and The NAMES Project Quilt in the 80’s


Our family was invited to attend the Opening Reception of “A Visual Journey: From AIDS to Marriage Equality,” featuring the photography of Mark A. Lee, a friend of Paul and Terry’s, at the Indiana Historical Society, tonight, Thursday, October 8th. My brother, Paul Chase, is one of five people being honored as a member of the LGBT community who left their mark on Indianapolis.

Paul Indy's LGBT exhibit

No one was available to travel to Indy tonight.

On Monday during a phone conversation, almost at the exact same time, Mom and I told each other how much we wanted to attend the opening reception.

By Tuesday, we had booked a hotel room, and soon, Mom and I will be taking a road trip to Indianapolis. We can’t wait to see Terry. It’s been way too long since we last saw him. We’re going to the exhibit with him, and then having dinner with our adopted Indianapolis family (Paul and Terry’s friends) before heading back home Friday morning. I can’t wait.

After reading about the exhibit, I found a folder I’ve kept since 1988, prompting memories I want to share.


My brother came out to me during a phone conversation the week I graduated from high school.

I guess this would be good time to tell you this isn’t going to be one of my humorous stories. I didn’t know when to tell you, but thought you should know.

That’s pretty much what Paul told me on the phone, except I remember his exact words: I guess you know by now I’m gay. We both laughed as I said, “Yeah, I already knew that.” Then he cautioned me not to trip as I walked across the stage at the Ravinia Pavilion in Highland Park to receive my diploma, the same stage he and my sister had walked across years before. He told me that if I tripped, he would laugh loud enough for me to hear him. I knew that, too.

I often think back to that conversation just to be sure my memory is correct about the way I felt after he told me he was gay. And, it’s always the same, so I guess it must be true.

It didn’t matter to me one way or the other. It wasn’t a big deal. It wasn’t a big secret in our house, either, for which I thank and admire my parents. It was 1979, after all. People didn’t talk about it. And, we didn’t announce it to everyone we knew. It was none of their business.

I do remember feeling happy, though because we all loved Terry, his “partner,” or “ special friend,” or whatever the PC word of the day was back then. (Yes, I just noticed it, too. My brother’s initials were PC.)

I was relieved, too, because no woman would ever have been good enough for Paul, and my fears of having to deal with some sister-in-law became abated.

But, the most important thing to me was being able to raise children who grew up with my sister and her husband, and my brother and his, for all intents and purposes, who they loved and who loved them. There were questions, and there were honest answers.

My brother often told us about a friend who spent the weekend at Paul and Terry’s house with her young son. On the ride home, her son said, “Mom, I think I figured out something about Paul and Terry.” She braced herself because she thought she was going to be asked a lot of questions about their relationship, and asked, “What did you figure out?” He said, “I think they’re vegetarians.”

I love hearing Terry tell the story of how he and Paul met while studying in the Indiana University Memorial Union. Terry said Paul kept looking at him and eventually came over to where Terry was sitting to say, “hi.” He told Terry he had to run to the bookstore and would be right back.

Terry thought he’d never see him again. But, as he always did, Paul kept his word and came back. And that, as they say, was the beginning of a beautiful relationship that lasted for 40 years.

In the early 1980’s, I met someone who told me her brother was gay and had died of AIDS. Her parents told everyone their son had died in a car accident.

My brother spent the early 1980’s helping people with HIV/AIDS try to survive and live their lives as if they hadn’t been diagnosed. Ironically, and tragically, he died in a car accident in June, 2014.

When Paul and Terry lived in Chicago, I remember helping them at quilting bees making panels for The NAMES Project AIDS Quilt. I got to know their friends, and, sadly, eventually saw some of their friends’ names on panels for the Quilt.

Paul and I made a panel for someone who had died of AIDS who didn’t have anyone to make one in his memory. We chose his name from a long list. Some of the people on the list had either not told anyone, or had been disowned by their families.

I didn’t remember his name until I looked through the folder I found, but I’m sure Paul would have remembered. All we knew from his short bio was that he was a student in Texas who had always wanted to live in Hawaii.

We used donated supplies to draw and glue together a sunny beach, the ocean, and at least one palm tree with coconuts. We might have even put a monkey in the palm tree. I’m not sure, but it’s not out of the realm of possibilities of something we would do. After all, the panels weren’t meant to be somber, although some were; they were meant to celebrate the lives of the people who lived them.

The panels made in Chicago were sent to San Francisco to be sewn into larger panels for the NAMES Project Quilt National Tour.

Names project book

According to the book, The Quilt, Stories From The NAMES Project, written in 1988, “The idea for the Project originated the night of November 27, 1985, when San Francisco activist Cleve Jones joined several thousand others in the annual candlelight march commemorating the (1978) murders of Mayor George Moscone and (San Francisco’s first openly gay elected official) Harvey Milk. As mourners passed by, they covered the walls of San Francisco’s old Federal Building with placards bearing the names of people who had died of AIDS.”

Wind and rain eventually tore the cardboard placards loose, but people stood and read the names for hours. The image of the placards waving in the wind looked like a quilt to Cleve Jones who is quoted as saying, “A quilt is the perfect symbol…What is a quilt? It is made collaboratively, made to to be used to provide comfort to those who are cold and sick.”

On October 27, 1987, an article written by Robert Atkins in “The Village Voice” described the inaugural display of the Quilt at the Capitol Mall in Washington, D.C. Atkins reported how eight volunteers unfolded 32 sections, each containing 60 three-by-six foot rectangular panels “double (the size of a) football field (!)” At that time, there were 1,920 names on panels made by loved ones and strangers who volunteered to make sure each person’s life was celebrated and remembered.

Names Project Ad

As part of the National Tour, the Quilt was coming to Navy Pier in Chicago July 9-11, 1988. Included were the panels made in Chicago. At the time, I worked as a copywriter at an advertising agency, and Paul asked me to create an ad for local newspapers and magazines. I did, with the help of a friend who was an art director at the same agency.

I saved the ad. I was proud of it. I was proud that he’d asked me to create it, and honored I was allowed to stand with so many other volunteers, dressed in white, wearing The NAMES Project pin, at Navy Pier as guardians of the display of the National Names Project Quilt Tour as it made its way back to Washington D.C.

Names project pin

On October 8th and 9th, 1988, the National Tour ended as The Quilt returned to Washington with more than 10,000 names on 3,464 panels sewn together. Panels continued to be sent to San Francisco, but could not be added in time for display.

NAMES Project Navy Pier scan

There is so much more I want to share with you about Paul and Terry. I always said they were the happiest married couple I knew. They couldn’t get married, though, until the day Paul died, June 25th, 2014, the day Indiana overturned the ban on gay marriage. He and Terry were going to get married the next day, and Terry still wears a wedding ring he’s worn for years.

Terry has sold the house they shared for 25 years. He was isolated on 16 acres of land. At first it was hard to imagine not being able to visit that house ever again. But, knowing how happy Terry will be living in a real neighborhood, close to his friends, renovating a house he truly loves, makes me happy, too.

The exhibit runs from October 10th through November 14th, 2015. You can read an article about it in the magazine “Nuvo,” here:

Something I found in the folder recalling just the beginning:


Bad Breath

While at an appointment with my allergist at the beginning of the summer, a breathing test revealed my lung capacity was not what it used to be. Neither are the coordinates of my breasts.

To give all the allergens just hanging around outside an all-access, open invitation, and equal opportunity to waft into my body, she prescribed a nasal spray, and an Albuterol fast-acting rescue inhaler I was to use for the rest of the summer.

Rescue inhaler

I remembered how to use the nasal spray, so that was a no-brainer. But, it had been years since I’d needed to use Albuterol, so I thought I should read the directions located inside the box.

It’s a good thing I read them while inside my air-conditioned house instead of waiting until I was on the hiking tour I’d planned later that humid, 90-degree day through the smoke-stacks of Gary, Indiana. (It’s a joke, Mom. And I mean no disrespect to Gary, the original home of The Jackson Family.)

droopy inhaler 2

It took about 15 minutes for me to be able to pry the instructions out of the box because they were Oragamied around and underneath the inhaler, and then held in place by a tiny glop of that rubbery sticky stuff.

Why did the manufacturer think a tiny glop of that rubbery sticky stuff was necessary? Is Albuterol considered a gateway drug?

With sweat droplets beginning their descent down the sides of my face, I eventually unfolded the manuscript.

One thing was for sure: Those directions were never going back in the box the same way they came out. In fact, they’d probably never fit in the box again at all.

Side One
Side 2
Side 2

I felt as if I were reading this*:

Marcel Proust in search of lost time

Once opened, I couldn’t read a word of the 7-point font, so I had to search for one of my three pairs of reading glasses.

By the time I found my glasses, and had wrestled the instructions from their box, I was feeling slightly dehydrated. I took a washcloth from the linen closet to mop my brow, and a Gatorade out of the refrigerator to replenish my lost electrolytes before settling in on the sofa to read the instructions.

I expected the directions to be in bold print in the very first paragraph. They were not.

I had to Evelyn Wood speed-read my way through each and every paragraph only to find lots of big, multi-syllabic scientific words, and chain-link bracelets. Since I had no idea what they meant, I’d like to share my interpretation.

I’m allowed to do this because, as a writer, I have Pandemic Lices.

chemical chains4

The only thing I remember from chemistry class is the “The Elementary Periodical Table.” I took chemistry so long ago, I don’t know an atom from Adam.

After this extensive search, I finally found the treasure I had been seeking, tucked away between unintelligible rocket-science-speak.


The manufacturer couldn’t put that tiny, little bit of information in the first paragraph? Or on the outside of the box?

I always kept the nasal spray and inhaler in the drawer right next to my bed so I wouldn’t forget where they were.

But that didn’t stop me from eventually forgetting to use them.

Recently, I began feeling tired during the day, even after sleeping well the night before, plus I wasn’t enjoying my breaths to their fullest. Oh, the allergens I had been missing.

At least there was a reason I’d wake up with my laptop just sitting there on my, well, lap, waiting for me to type the next word after, “eiei-uh-oh.”

I usually have no idea where anything is, but remembered where I’d left the nasal spray and inhaler, and decided to do an experiment to see if using them would make a difference.

Almost immediately, I had more energy than I‘ve had in months. The nasal spray and inhaler were my Holy Grail of Geritol!

During the next two hours, I became Martha Stewart on steroids.

Martha Stewart on steroids! Original photo credit: Martha Stewart's Cooking School, episode 1; eggs
Original photo credit: Martha Stewart’s Cooking School, episode 1; eggs

I power-walked through every room in the house and found something of mine that needed to be put away. I had been leaving shoes wherever I took them off. I found the other two pairs of reading glasses, 17 bobby pins, and several days-worth of unopened mail.

I backed up my computer to the external hard drive, loaded the dishwasher and scrubbed the sink, put away five bottles of nail polish, and finally unpacked and placed my obnoxious faux diamonique jewelry I had taken to Vegas two weeks ago back in my jewelry box.

Now I try to remember to use the nasal spray and inhaler every day, because oxygen rocks!

But when I forget, I get reminders. The best one so far was waking up to find I’d fallen asleep while writing, and had used the top of my laptop as a pillow. With that reminder etched in my head, I doubt I’ll forget again.

Where's the spackle?

*In Search of Lost Time by Marcel Proust

Rated the longest novel ever by the Guinness Book of World Records, there’s no doubt that Proust’s masterpiece could quite easily double up as a mightily effective doorstop, with 13 volumes clocking up nearly 1.3 million words.

Source: (Ironically,),


As I got out of the car in a huge parking lot that had hundreds of parking spaces, I looked down and saw this:Banana peel

I’m just happy that I found it before it found me.


Don’t Let This Happen to You!

Phoebe sleeping on dishwasherAt 11:00 PM last night, even though I was really tired, I thought I had at least one hour of writing brainpower left in me. I was wrong.

1. I woke up and realized I had drifted off for a minute or two. I looked at my computer screen. I had created 137 blank pages.

2. Before falling asleep, I did get some writing done. I had written two lines:



mmmm               /          ////fd                        fffn∫∫˜

3. I have no idea what those last symbols mean.

4. I have no idea how I even made those last symbols.

5. I began deleting the blank pages. I stopped to check to see how many more I needed to delete, thinking I had done a pretty good job, so far. There were still 108.

6. More deleting of blank pages. I still had 76 to go.

7. My forehead hurt. I realized that when I’d fallen asleep, I had used the open lid of my computer as a head rest.

8. Yes, it left a dent.