RIP Tim, Between Total Eclipse of the Heart, Now Together in Electric Dreams

In DC after an arrest to save the affordable care act. The actions, solidarity was expanding everywhere. Thank you to AlanTimothy Lunceford-Stevens for all his leadership on this. He was there supporting us action after action in DC, welcoming us out of jail. Note the plastic bag, holding my belongings, I was holding. “America has no idea what is about to hit them with this bill,” noted Tim, who has combated HIV and cancer for years now. He depends on just the sort of public health insurance being gutted by this bill. “Americans who have their parents live with them, who get Meals on Wheels a few day a week, they are going to lose that funding. They are not thinking about that. We’ll see it in block grants for healthcare, cuts to entitlements, money for transportation, schools, etc..."

Road Trip with Tim and Mel, October 2019. 

Looking at these pictures of Tim from three years ago, hanging out with Mel in Prospect Park at the annual Virginia and Andrew picnic. So many smiles, so much care and friendship.

I think about Tim as part of my first month club, the people I met my first month in NYC in 1997, going to SexPanic! meetings, someone who was there for Matthew Shepard protests of 1998 and garden protests and immigration protests and trump protests for 25 years as movements ebbed and flowed through our lives.  The years of friendship, laughing about the sex and activism, our collective flaws, Tim wanting to knock all the books off the bookshelf in Susan Collins' office.  I think about it all now.

 

I had three distinct periods of friendship with Tim, the late 1990’s with ACT demos, speaking out against homophobia and the two decades of activism that grew out of that, the Trump Years, when we drove to and from DC to fight for the Affordable Care ACT, under attack from Republicans, fighting the GOP tax scam, taking bust after bust for civil rights, and talking about it all along the way. The COVID years followed this somewhat golden era of friendship, with Tim’s illness taking increasing intensity; isolation following, before he eventually  departed.   By far the happiest time of our friendship took place on those trips to and from DC, the demos he was a legal aid for when we were getting arrested, when he articulated an urgent need to save healthcare for everyone. For a while there, I talked with Tim every day, chatting about actions coming up, greeting him at Rise and Resist demos, etc. When he joined us in the car to DC to fight for the Affordable Care Act, Tim held court with the other activists, chatting with Austin, my cycling comrad, all the way to DC, laughing all the way, even when he left his glasses behind, probably crumbled in the parking lot, he lamented with a smile and a giggle. We talked about his life in New York and Columbus, Georgia, my Mom’s home town, as we sat in the bus on the way to fight the Kavanaugh appointment to the Supreme Court. We got arrested together on that one, cheering and celebrating when we got out, chatting about ACT UP and sex and needing to get away from the bigots of our Southern childhoods all the way home. In DC, Tim made common cause with disability rights activists and immigrant advocates fighting for the Deferred Action for Childhood Arrivals.  On the stories continued to and from demos, meetings, court dates, etc. 

 

A blog entry from October 2019, when Mel, Tim, and I went to DC to pay our fines after an arrest at the Supreme Court captures some of the feel of those conversations and Tim’s history as an activist: 

 

“Only 277 miles to Brooklyn  from Washington…talking. Timothy recites two monologues of his, in a new play he and Melvyn are in, that will premier on November 10 at Stonewall Inn, Upstairs in Manhattan.  Julius Bar – The Philosophers – A Revue.

 

“I’ve always been an activist,” reads Tim. “When I was ten, my parents asked me what I wanted to do for the community. I said, I wanted to help disabled kids just like me…”

 

Timothy plays Together in Electric Dreams, asking  Ben to listen  to the words:

 

“I only knew you for a while

I never saw your smile'til it was time to go

Time to go away (time to go away)Sometimes it's hard to recognize

Love comes as a surprise

And it's too late

It's just too late to stay

Too late to stay (Love never ends)We'll always be together

However far it seems(Love never ends)We'll always be together

Together in electric dreams Because the friendship that you gave”

 

And tells a story of his lover Stephen who died of AIDS.  After Stephen was gone, Tim found a note reminding him to  listen and remember. The song was for him. Ben says it is one of his favorites from long ago.

 

Timothy recalls his first trip to New York City. Attending University  of Georgia in Athens, he was dating Clair, the sound for the B-52’s. On a whim, the two travel to CBGB’s in NYC, wandering through the lower East Side of Manhattan 17. At years of age, a year after finishing treatment for AML Leukemia, to come from Atlanta and Athens, to New York, the experience changed Timothy. Timothy still stays in touch with Fred and a little with Kate..

 

Chatting about the South, road trip music, and our lives, Ben is thirteen years younger than Timothy. Both lived in Georgia as children.  Ben went to Texas and Timothy  stayed in Atlanta, until school took him to California schools when he was 15.

 

The First Action Tim remembers was un September of 1987 when ACT UP protested the inadequacies of the newly-formed Presidential Commission on AIDS. It met for the first time in Washington, DC. Tim did not give testimony,  but sat in witness that day as other Act Up members did.

 

Tim’s been with the group ever since that action in September of 1987, using the group as a tool for advocacy.  

 

As he told  Sarah Schulman in  the ACT UP oral history project Interview 7 April 28, 2010:

 

“I had my first friend who lived down in the Southern Tier, but he was a gay man living in Rochester. And he got this disease that he totally withdrew into his apartment, and we couldn’t understand about Dean; what had happened to Dean. And then he died. And his parents wouldn’t tell any of us what happened. Before it was over with, then we had other friends that were getting sick, but people weren’t talking about AIDS. My work caused me to come to New York City periodically. And I’d be down here, and all of a sudden, I started seeing messages about these men in Chelsea that were setting up a hotline. And I contacted Paul Popham. And then I ended up getting involved in GMHC, right at the beginning of GMHC. And Michael Shernoff asked me to join the 300 Men. And I happily, with the time I had in New York City, participated in those interviews. And then I did this study. Andy Humm was in my group. I became friends with lots of men in the community, and then I understood the urgency of HIV and AIDS, as it was beginning to be called, in ’83. And I’d go back to Rochester, and it was this whole hush-hush. And I think that set up a lot of the, I guess, internal anger that I had. Because in ’86, I helped found Dining for Dollars in Rochester, with the local AIDS group. And we would have an evening where people dined at home and then all showed up at a downtown mall. And I organized silent raffles there, for fund-raisers; and started helping with the local group. But down here, in ’87 — let’s see — I was at a candlelight vigil. And I met a guy named David. And I told him about how I was feeling about HIV, and concerned about getting it, and didn’t understand all my friends dying around me, and things like that. And he said, you know, there’s this new group that just got started, like two months ago. And he said, they’re really tackling it, and whatever. And he said he had been to a couple of meetings, but he wasn’t part of it. But he said, you know, they meet on Monday nights; seven or eight o’clock, and you can find out about them. And it was maybe a couple weeks after gay pride that year that I ended up going to ACT UP. And pretty much, that changed my life, because I was still going back to Rochester. And I had all this ACT UP mentality. And there, I was considered just a little too in-your-face. I remember – there was a problem. AIDS Community Housing — not AIDS Community Housing; Community Health Network, a local clinic there — one of the doctors had called me, and said, we have a patient whofs got a problem with Blue Cross, and is there anything you can do to help him get some of his AIDS meds, and things like that? And so all I did was pick up the phone. I was hearing at the time. And I picked up the phone, and I called this woman that was at Blue Cross, handling his account. And I said, he’s a friend of mine. And I don’t understand there’s these two drugs he needs, and you’re saying they’re not on your formulary, and this man needs Timothy Lunceford Interview 8 April 28, 2010 them, and whatever. And she says, well, we just don’t have any provision, and all that. And then I said, well, I’m in ACT UP New York. And we don’t like it when insurance companies deny treatment for people, and whatever. And before it was over, that turned into a whole mess, because she called the doctor and said that I had threatened to bring busloads of ACT UPpers…Blue Cross knew about ACT UP. And she said that I threatened to bring Blue Cross – lots of people up there for this guy. And she said that they were going to give him the medicine, but she didn’t like that I called her. And that’s when I knew that ACT UP could make a difference in people with AIDS’ lives. I had never threatened her. I had always been as nice as I am. But she had some information that I didn’t have. And it really changed her mind about taking care of this patient.  Paul Popham - A sweetheart. He had an idea – Nathan Kolodner was in the group. Basically, they saw where government, community, and everything wasn’t tackling what was happening in New York City. And by setting up this hotline, I think it helped a lot of people. And I don’t think they had any idea that GMHC would be what it is today. But I think it was more concerned about helping a fellow brother.”

 

Tim and Mel came over for movies on New Years day, January 2020, chuckling away,  irreverently laughing at it all. 

 

We talked about bromance, adoring catching up at Rise and Resist or World AIDS Day demos, uptown, downtown, Staten Island, and Washington Square Park, Reclaim Pride with Mel pushing his wheelchair, all day long, or a Virgina and Andrew’s summer BBQ in the park in June 2019. 

 

Tim always had health issues he was grappling with, a broken this or that, a fall on the stairs on the subway that left his arm broken, unable to hear. It just wouldn’t heal. As the years went on, they became more serious. And his health deteriorated. I didn’t see him much once COVID exploded.  His speech was barely audible at Larry Kramer’s memorial, two years ago. But the point was real. We were all in the struggle together, fighting AIDS and ALS and cancer for each other and for the community. By the time we reconnected in the Spring of 2021, Tim was bedridden in his tiny West Village, New York apartment. 

 

We had a few video conferences that summer.  The mystery of Tim’s eroding health was solved. He had been diagnosed with ALS otherwise known as Lou Gehrig's Disease.  It was like HIV in the early days, a death sentence. Life expectancy after diagnosis was around two to five years. Not good. To date, there is no cure to stop or reverse the progression as muscles lose control. 

 

On one call, Tim cried and cried, more than aware of what was happening. Mel caressed Tim. But I knew this was a stress on him as well. 

 

Fully vaccinated Mel said I could drop by. The visits became weekly or biweekly to their West Village apartment. There we chatted about old ACT UP friends, who disappeared with his old issues a Steam, a public sex journal, we loved, broadway show tunes, Barbara Streissand, the nature of poetry, Walt Whitman, leaves of grass, what being friends was all about.  The reality was he was the closest of friends.  He always had a smile. Visits with Tim and Mel made my Sundays. I’d ride my bike to Judson memorial for services, and keep riding West to chat with Tim and Mel.  Usually for half hour or so.  Tim sat up in bed and talked about friendship could mean. Gradually speaking got harder for Tim as ALS wore on him.  Words became less and less. But we still had a quarter of a century of cultural references to share.  I read more and more, Ginsberg’s poems of cocks and erections, buildings that are violence, that we translated into our dislike for de Blasio's plan for East River Park.  

 

Once there, I’d run into AIDS activists from all over town, Jim Eigo, Damon Jacobs, Viki Noe, dropping by to lend some cheer. 

 

When I brought the teenager to visit after Thanksgiving, he could only muster a few words, although he’d seen her demos for some two decades.  

 

“I like your hair,” he told her, sitting up with great effort.

“I’ll see you again soon,” she said on her way out that day, although none of us really believed it. 

 

With a spouse he met at an AIDS bereavement group after they both lost lovers in the mid 1980’s, Tim was the consummate AIDS activist, as he told Sarah Schulman (see oral history above).

 

I thought I might see Tim at World AIDS day last December, but I just missed him, arriving after he’d left.  

 

Tim wrote about the day, one of his last to leave his apartment:

 

“Yesterday was special.  I was taken down the stairs by two lovely men from Senior Ride, an hour late for my seven hours in my Greenwich Village neighborhood. We were going to buy new pants, after I tore the back of my kaiki’s climbing up my in-home hospital bed, we walked up 7th Avenue.in my backpack was a marker, hoping to see Benjamin Heim Shepard to sign new book about SF. It was World AIDS Day. As we walked up 7th Avenue. Mary, my AIDE, my devotional care giver Spouse Melvyn, and my wheelchair carrying me. First, my desire for a Subway half size turkey Sandwich. Mary got one too. Melvyn does not eat lunch.  We went back to the AIDS Memorial to eat. We sat in the Sun. We saw a lone man, working on his world AIDS Day poster.we walked to actual white metal art. We saw Doug of housing works setting up candles for the later event. We rolled around the park. At the AIDS Memorial we saw Ed Barrón.we talked, bringing up Matt Ebert and his niceness. Matt had invited Ed to their home. A staircase, that was climbing up and fell down. Matt took Ed to ER and home, stayed for a week helping Ed out.  Ed was preparing to speak the AIDS Memorial avtivities at 5pm. A selfie with Ed, Melvyn and me. Ed talked of his visi ACTUPNY and how we met initially. He said ACTUPNY was where Ed turned when he seroconverted. Ed said that was where he met me and we became friends… We left for my Special Dinner at 5pm, with family. I said walking down, I would like to visit the AIDS Memorial again. the crowd was forming now. All I could think of was loosing my paramours, to AIDS, Dean, Tony, Buddy, Donald, my lover Stephen, Paul, and Michael. Then I saw Valerie and Jennifer Johnson Avril, I bursted out crying. Everyone looked for tissues, Valerie came to the rescue. Jason Rosenberg hugged me. Tim Murphy hugged me.I balled. Jennifer said do you want to go home to rest, I said I have to go to a special dinner. We left. I had blanket all day. My feet were ice cold. Walking and Rolling to the restaurant Morandi on Waverly Place and 7th Avenue. Melvyn said we were eating outside. Just then we saw Michael Kerr and Joan McAllister. Michael had cornered all the outdoor gheaters. Mary rearrangedk blanket. Joan had a blanket too! I had a Roy Rodgers drink, coke, with cherrys. Marion arrived and she liked the Shirley Temple drink.Adults were drinking white wine and red wine.  Michael Kerr announced it is Timothy’s 21st Birthday.I was elated. We ordered I stuck with Minestrone alla Genovese soup and Focaccia Margherita. Others ordered Insalata Verde, Insalata d'indivia, risotto topped with Osso Buco, scallops stuffed in big pasta shells, with cream sauce and a artichoke plate toasted plate. Then they brought out a Classic NOVASERRA

GRECO DI TUFO wine for my first drink at Sweet 21. I told everyone it was my last birthday. Everyone said no,it should be every month. Another said every quarter. Then someone said every Spring and Summer months. I like Birthdays, especially mine. Then Cinderella’s attaché said, it’s 7 occlock, it’s 7 occlock, we have an important date with our carriage.so Melvyn left for the 2 senior ride men. Melvyn tapped on window of driver, asking if they were here to pick Timothy, they no. As Melvyn walked away, they hollowed we are just kidding.Meanwhile, the staff brought me a lighted candle tiramisu dessert. The staff (6 or more) and dinner guests, all sang Happy Birthday. Party crasher Melvyn returned saying we had to go. Grabbing my wheelchair, my feet were not on the wheelchair. Mary quickly put cold feet back on the wheelchair.  Marion carried left over bags. I lost my GRYT new hat and mouthpiece case. At home, everyone entered, while I did the transfer to stair-chair.

During the  come up, the apartment had to be cleared for my arrival of guests. Then a lot of fuss getting me in the bed. My legs were cold up my thighs. Melvyn was tired, so he went to bed. Mary went home, Marion helped get ready for bed. Cinderella slept well.”

 

The following Saturday, Tim, Mel and I chatted about World AIDS Day. He was in great spirits after seeing everyone. But he was worried.  His health was in decline. And research around ALS was not progressing.  It was harder to breathe or speak. Still he sympathize with the campaigns i was involved in. 

 

“DeBlasio should be tried in court on New Years Day for tearing culture on the East Side Park and the Amphitheater,” he wrote on December 24th. 

 

On December 30th, he wrote a desperate note about what he was going through:

 

“ALS- It breaks down the muscles in your body until you die there are 20,000 of us in the US 400,000 in the world. Nobody patients, family’s, or friends are advocating for a CURE and Pharma do not want a CURE so we die in 2-3 years It SUCKS to be with this illness when you see the life’s of AIDS patients and cancer patients and diabetes patients. None for ALS patients.”

 

Each day, he posted more and more about his declining health and the nightmare he faced as a slow motion car wreck, his future uncertain.

 

Alternately angry and elogiac, he wrote about his life:

“Something about my life, you never heard about my 20’s. I did not like the drugs in my modeling days of Heroin and Cocaine. It was my religion growing up in Georgia.

I modeled for Tommy Hilfiger line sports wear

I modeled for Hugo Boss line suits and Tux’s

I was a model from 17 – 23  in New York -Paris -Milan

Drugs were the reason I left modeling

Right before I left modeling, a kismet occurred

I was in Paris to modeling

For the HUGO Boss line suit and Tux

A gentleman saw my FORD resume.

He asked to see me do Ballet after the Runway, to do a classical piece.  It was Piano Concerto Number 2, (Rachmaninoff), a serious piece about coming out of depression, a terrible rebirth in life.

After, He flew me to England

Sheffield England,to a empty sanitarium

In the video For the Bonnie Tyler video

“Total éclipse of the heart”

It was fun to make at 23. Bonne Tyler was nice and played with the boy’s during off time.Now will live forever in YouTube and other media after I die of ALS Lou Gehrig Illness.

I want all of you Watch it now…”

 

When I visited, he was less able to communicate with me.

Still he posted notes about his struggles:

 

 

“Daily Struggles with Lou Gehrig Disease or ALS or Amyotrophic Lateral Sclerosis

Key

X Can’t do

& still Can do with problems

Nothing  Can do still still do

X Can barely walk

& Can’t speak

Can’t cough

Can’t blow my nose

X Can’t whistle

Can’t use a zipper

X Can’t put my gloves on

Can’t balance

X Can’t cook

X Can’t get anything out the fridge or freezer

X Can’t wash dishes

X Can’t grab a package on the front porch

X Can’t walk my dog Margarita

X Can’t pick up dog Margarita poop

Can’t fly

Can’t travel

X Can’t work

X Can’t shovel snow

Can’t move anything

Can’t carry multiple things

Can’t get money or cards out of my wallet

X Can’t go out in the cold temperature

Can’t floss my teeth

Can’t cut my fingernails

X Can’t cut my toenails

X Can’t open windows

X Can’t go in the basement

Can’t use tools anymore

Can’t play guitar

Constipated

X Struggle wiping my ass

X Struggle to get off the toilet

X Struggle to shower

X Struggle to stand up

Struggle not feeling my toes

X Struggle with my feet under a blanket

Struggle pushing tissues up my nose

Struggle cleaning my ears

X Struggle unlocking the doors

X Struggle to open the doors

X Struggle turning a lamp off

Struggle getting a mask on

Struggle breathing with a mask on

Struggle getting a hat on

X Struggle getting a coat on

Struggle pushing the stair lift remote

Struggle brushing my teeth

X Struggle doing a haircut

X Struggle shaving

X Struggle pulling the blinds down

X Struggle filling the dog Margarita bowl with water

X Struggle feeding my dog Margarita

X Stuggle feeding my Cat Fanny

X Suggle with cleaning our the Cat Fanny box in bathroom

X Struggle picking up anything on the floor or ground

X Struggle getting the mail out of the mailbox

X Struggle opening mail

X Struggle filing documents

Struggle to type on the computer

X Struggle opening a Ziploc bag

X Struggle hugging people because of balance

X Struggle getting in and out of a wheelchair

Struggle to chew

Struggle swallowing pills

Struggle swallowing liquid

Struggle swallowing food

Wish People understood ALS Mentally and Physically?

Especially those close to you?

It’s not a level playing field!

So many other daily struggles, and it will get worse as time goes on.

No one deserves this disease!

Lou Gehrig Disease or ALS or Amyotrophic Lateral Sclerosis…”

 

I visited in the hospital on several occasions. 

Sometimes staff turned me away. 

Compounding matters, Tim was struggling with COVID. 

So, I could only stay for a minute. 

On a final drop by, a nurse asked how long we’d know each other.

25 years I told her. 

25 years. 

And I broke down saying goodbye, it all hitting me. Tim looking at me, unable to speak. 

I love you, I said over and over, making sure he could see me say it. 

 

The last time I saw Tim was at Amsterdam Nursing Home. 

After testing for COVID downstairs, I went upstairs to see him. 

Tim was not really able to type or say more than hello with his eyes. 

He ate a bit with the help of an aid. 

And I said goodbye, not sure if I'd see him again. 

 

A few days later, Mel called to tell me Tim was entering palliative care. 

It was for the better. 

 

He didn't last a day. 

 

Jim Eigo made the announcement:

 

“My dear friends & fellow activists – I want you to know that our friend & fellow activist, Tim Lunceford, died peacefully at about 1:50 PM on Saturday, May 28, at Amsterdam Nursing Home, in the shadow of the Cathedral of St. John the Divine, Morningside Heights, Manhattan. From all I could see over the past 4 weeks, Tim received excellent care at the Home. There will be a memorial service for Tim on this coming Tuesday, May 31, at Greenwich Village Funeral Home, 199 Bleecker Street, between MacDougal Street and 6th Avenue, between the hours of 2 PM & 5 PM, & then again between 6 PM & 9 PM. All who can attend are welcome, but Tim’s spouse, Mel Stevens, asks that all who attend be vaccinated against COVID – a suitable request, I think, for a gathering to honor a man whose healthcare activism began when he was a child.”

“I have Viking Blood.  The age of my death is 94,” Tim told me a year ago. “The doctors are not as optimistic as I am, he told me when it first started. How quick that changed.

 

I think about Tim now, that smile, those thousands of demos, seeing him at World AIDS Day actions, reading the names, recalling what it all meant to be an activist and to care, to fight to alleviate the suffering of others, to care for the DACA activists.  We love you, he screamed.  He showed me how to be a full person, embracing our collective experience of pain, of connection, of the joy of fighting the bigots, with a foot in the gutter, our eyes looking toward the skies, his ashes on the way to Paris, joining the immortals.  

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