I posted this last World AIDS Day and am repeating the post for this year’s event. The people I have lost, many of whom are memorialized here, taught me so much about, live, courage and living every day to the fullest…
In Memory of Departed Friends – Shalom and L’Chaim!
By JerBear in Santa Fe
(Note: Some of the names in this post are pseudonyms. Portions of this I created years ago but it has been extensively edited and added to.)
On October 11, 1987, I journeyed to Washington, D.C. for the March on Washington for Lesbian and Gay Rights and the first display of the Names Project’s AIDS Memorial Quilt. I started the day with a church service of celebration and remembrance. At one point during the service the speaker asked for people to call out names of friends, family and lovers lost to AIDS. One by one names were called out by voices choked with emotion. I remember thinking to myself, “how awful for these people”. The event planted a seed in my mind to do more to combat AIDS and care for those already infected. I had no idea just how monumental my decision to join others on the frontlines of the battle against AIDS would be. This determination ment that in less than a year; I would meet new friends, become emotionally attached to them and then go from visiting them in hospitals to attending their funerals.
Later that day, I walked among the panels of the Memorial Quilt, moved by the celebration of life and the expression of grief each panel represented. The quilt further strengthened my determination to get involved in the fight against AIDS. Upon my return from Washington I started volunteering at a fledging AIDS service organization (AIDS Project Worcester) until they secured funds. Once funding was secured I was hired and began work on the second day of January, 1988 as Client Advocate and Gay Outreach Coordinator. The first office was in an abandoned factory building in a rougher part of the city. We occupied the front offices and made do with some really rustic conditions. Soon we had an ever growing client caseload and my new journey was underway.
Soon I became close friends with many people living with AIDS, including Peter. Peter was a working-class Irish Catholic gay man. He was defied most of the stereotypes of gay men. He was just a regular guy who loved wrestling and had pictures of Hulk Hogan on his wall. Peter had a big heart and was a pleasure to talk to. Unfortunately I didn’t get to spend near enough time with him. He went fast, this was 1988 and all there was to offer was AZT which we now know was administered at toxic levels.
I was there when he died I will never forget those last painful struggles for breath as Pneumocystis Pneumonia ravaged his lungs. It was that ominous “death rattle” sound coming from his lungs that stays with me. I was quite traumatized but didn’t know who to talk to. After the funeral mass they had a get together at an Irish bar/pub in Clinton, Massachusetts a town I lived in for a couple years before I came out. The whole thing was almost surreal. Soon attending funerals became part of my life. So many bright lights snuffed out in the prime of their life.
Another memorable client and friend was an amazing man I’ll call John. John was the organist at one of the Catholic colleges in the area. He was very closeted and understandably concerned about being discovered at his place of employment. An early battle for us was with his insurance company that balked at paying first for AZT and then later aerosolized pentamidine which was the first big advance in preventive AIDS care. The drug was used as a prophylaxis against Pneumocystis carinii Pneumonia a leading killer of people with AIDS at the time. The insurance company balked at paying despite it’s efficacy being clearly demonstrated. Finally we were successful, due in part to his insurance company misinterpreting my job title. I was called an Advocate which the company took to mean that I was a lawyer. This would not be the last time that title cut through red tape!
Eventually John contracted another opportunistic infection – Toxoplasmosis a parasitic disease caused by the protozoan Toxoplasma gondii.. It soon progressed to encephalitis as the protozoa infected his brain. The sad thing was that only a few of us knew what was really wrong with John. The person who gave him the most comfort as his health deteriorated was an Episcopal priest and friend. He was there as John breathed his last breath.
The funeral was a high mass at the Cathedral of St. Paul attended by much of Worcester Catholic Church hierarchy including the Bishop. Some of the liturgy made me very uncomfortable but I knew John would have loved it. He was one of the many gay men I met who I called liturgical queens. Gay men who loved the pomp and ceremony involved in the worship services of Catholic and Episcopal Churches. My presence at the post funeral get together was a bit of a mystery to some. For others it was the final piece of the puzzle in determining the cause of John’s illness and death. As some people knew where I worked, I unwittingly revealed the cause of John’s death by my very presence. It would later result in a friendship with an out, celibate Chaplin at the college where John was an organist. But that is another story.
In 1989 I returned to Washington for another display of the AIDS Memorial Quilt. My friend Peter, an artist and a person living with AIDS, accompanied me. Now as I walked among the panels there were names of friends I had lost. I remember walking past the Vietnam Veterans Memorial on my way to the Lincoln Monument for a candlelight vigil and thinking this is our Vietnam. It may be hard to understand if you weren’t immersed in the struggle against AIDS. We were determined, angry and sad. This really did feel like war. We were losing friends and fighting against government indifference.
We reached the Lincoln Memorial in time to hear Cleve Jones, the man who spurred on the creation of the quilt. He gave a very moving speech. Afterward I stood with Peter as hand in hand we listened, sung and remembered I still recall the thousands of candles, their reflection dancing off the waters of the reflecting pool. Less than 1 year later Peter died surrounded by friends and the works of art he created.
A little before Peter’s death, Glenn entered my life. Glenn was a young man, just 22 years old, living with AIDS. Soon Glenn and I became a regular fixture speaking to youth in high schools, colleges and youth groups. Glenn was a tireless warrior – creating support groups and services where there were none. Even when he was really ill he never lost his zest for life. I remember hearing about him racing down the hospital corridor in a wheelchair when he was supposed to be in bed. Shortly after his 24th birthday Glen passed away. At a service attended by friends I stood by Glen’s casket and recalled the special person he was. Looking around the room, I saw the faces of Glen’s friends who were living with HIV and AIDS. For them looking at Glen’s body was like looking into a mirror of their future. Some of those individuals passed on in the years that followed and some, thank goodness, are still living life to the fullest.
The next several years were filled with the pleasure of meeting wonderful people. I want to share a little about some of the many people with HIV infection or AIDS that touched my life. I feel a need to remember their lives so they are not forgotten in death.
Melissa was a feisty, proud African American trans woman. I first met her at a meeting of a fledgling LGBT group. She was stunningly beautiful and made quite an impression when talk turned to the Catholic Church and it’s strange double standard of fighting against effective prevention measures while being wonderful caregivers when people with AIDS were dying. Melissa commented on the pope and wondered what he was doing “up there in his gown.”
The next time I met her she had changed for the worst. She had AIDS but also suffered from bipolar disorder. She was deep in depression and had totally let herself go. Compounding the problem was her tenuous living situation, brought on by her mother who, as her representative payee was supposed to be paying her rent and bills. Instead of doing that she had pocketed the money. I had to accompany Melissa to housing court to straighten out the mess.
I encouraged Melissa to take control of her health and see a physician. She did just that and for awhile was her bubbly self again. Unfortunately that respite was short lived. By then I had changed jobs. I stayed on as her “buddy,” (buddy programs were designed to pair trained volunteers with someone with AIDS to be a caregiver and friend). We had many conversations. One recurring theme was her sadness and frustration that the disease had robbed her of the opportunity to complete her sex change. She also shared how tough it had been to be trans woman. The only employment open to her was sex work. She recalled how difficult life was trying to survive. John’s could be violent and were not usually concerned about her as a person.
Unfortunately the time came when she again went deep into depression. This time it was worse as she was also suffering from dementia. When we finally got into her apartment it was a disaster. She was quite literally living in filth. God it was awful! Her clothes were scattered all over the place. There was dried feces and scattered personal effects everywhere. To see this proud woman reduced to this was heartbreaking. Eventually we got her admitted to a hospice in Boston. When me and my partner went to see her she barely recognized us. We took her out for awhile and upon returning it became painfully obvious how severely her dementia had become. She had a difficult time just navigating to her room, unsure at every turn. We hugged her goodbye and left passing the rooms of others in the last six months or less of their lives. I so admire the dedication of the hospice staff who selflessly cared for each patient making them feel loved and cared for.
When she died her family once again took control. I went to pay my respects at the funeral home accompanied by my dear friend Chris who worked for the Visiting Nurses Association. When we entered the room it seemed all eyes turned and looked at us. We definitely felt out of place but we’re pleasant and paid our respects. As we approached the casket my heart nearly stopped. There was a stranger in the casket. In an act of final indignity they had stripped her of her gender and dressed her as a man in suit and tie. I was livid but didn’t want to make a scene in the funeral home. So I left and vented with Chris on the ride home.
Michael was a force of nature. I met him soon after he become aware of his status. He worked at an insurance company where I and a couple others did a presentation on working with someone with AIDS. After we had allayed their fears Michael and I talked for a bit. This was the beginning of an enduring friendship. Soon Michael became an activist and spoke out educating people about AIDS. Like Glen, Michael accompanied me to high schools and shared his story. He became an accomplished speaker and his presentations moved many to tears and later to action. He left his job at the insurance company and began teaching at Worcester Academy, a prestigious prep school. He used a combination of art, health, science, history and personal stories to make the AIDS crisis real to his students.
His activism even garnered the attention of Presidential candidate Bill Clinton. After his election, the now soon-to-be President Clinton choose Michael as one of his faces of hope at his 1992 inaugural.
Soon after his exciting visit with the new President Michael accompanied me and two other person’s with HIV or AIDS on an ACT-UP style action on Valentine’s Day, during National Condom Week. We chose South High Community School in Worcester because they refused to let persons with HIV and/or AIDS speak in classes and they did not make condoms available to the students. It also helped that Michael and another activist were alumni of the school. I had created a Valentine’s Day card with HIV/AIDS and Safer Sex information. We stuffed the card along with condoms, lubricant and information on how to use condom, into a Zip-Lock® sandwich bag and created some posters to go publicize our purpose. This was the second or third time I had organised such an event but it was our first at this particular high school. We initially were trying to restrict our protest to the sidewalk in front of the school. Michael urged us to be more assertive when it became obvious that we were not going to distribute many condom Valentine packets in our location. So, he brazenly marched down the school driveway and poked his head into a bus and said Happy Valentine’s Day and began tossing the packets to students. It wasn’t long before the formidable presence of the approaching principal was felt. He whipped out his walkie talkie and yelled call 911. That did not deter Michael. We had walked off of school property and as the busses slowed exiting the driveway Michael began to toss safer sex kits/Valentines through the open bus windows and into the outstretched hands of smiling and laughing students.
The last time I saw Michael alive was at a AIDS fundraiser at local club. We were all chatting and nursing our drinks when Michael entered the room. I and others let out an audible gasp. Michael had lost a lot of weight and was living up to the name for his condition – wasting syndrome. He was there to help kick off a fundraiser and had insisted on coming.
After Michael passed away we gathered together to remember him and celebrate his amazing life. Due to his work and many speaking engagements, his presence had been felt by many people. The memorial service was held at his alma mater, Assumption College. The church was packed. Of all the Catholic funerals I’ve been too, Michael’s was the best. Their were accolades for his work and his favorite passage was read from the bible. As we all huddled together and she’some tears we were reminded of how much he meant to us. As I recall, of the group of us who were huddled together after the funeral, I’m the only one still around. 😦
Sometimes the deaths came in quick succession. In my mind I envisioned them as leaves falling from a tree, their bright colors shining before they reached the earth. These were some of those precious leaves:
Jean was a wonderful African American Trans Woman who lived life to the fullest despite being disowned by her family. Unfortunately she developed TB, an opportunistic infection associated with AIDS. She was buried in a pauper’s grave but is remembered by those of us who knew her.
Tim, a wonderful man full of Southern hospitality who insisted on calling me sir. I visited him in the hospital many time before he left us.
Joe who fought to ensure that his partner would inherit his home even while his biological family engaged in shouting matches in the hospital corridor trying to cling to what they thought was theirs. He succeed in his wish and died knowing his partner was secure.
Maria – a mother in recovery from injection drug use. I visited her in a shelter for battered women. One day she was gone.
Phillip a former teacher and a bisexual man who died and left two children.
Donna, an amazing activist, mom and a recovery addict who relapsed for awhile before reentering recovery. Sadly she too succumbed to complications relating to HIV/AIDS. She will always hold a special place in my heart.
As one by one each of these people and others succumbed to the rages of AIDS and passed away I became a massive jumble of emotions. I cried at funeral after funeral and as my sorrow turned to anger I joined others in acting up against the injustice of it all.
Now fast forward to 1999 – for several years the wonders of combination therapy had been hailed as the beginning of the end of AIDS. Fewer people were dying and a sense of optimism was in the air.
I was in my last few months of employment with the People of Color AIDS Foundation. As part of my job I conducted regular prevention activities at The Paramount, a club in Santa Fe. It had been a long day and I was tired. Then an angel, slight of build and sporting brightly painted fingernails, sauntered up to where I was standing. He said, “Jerry, you look really good tonight. I thought, to myself, what a wonderful and selfless person. A few weeks later this angel, known as Thumper, passed away. At his unique after funeral get together people painted their fingernails, looked through photo albums and shared stories from Thumper’s life.
Later that year, during Hanukkah, I received word that a dear and close friend from Central Massachusetts had past away. Marc was one of a kind, a tireless activist with a flair for putting the fun back into activism. From huge hats, to a tiara, leather vest and a tutu, Marc celebrated life. As I wrote in a eulogy, Mark forever for me will reflect the spirit of Hanukkah and his light, passed on to others, will never go out. I was really shook up by Marc’s passing. Thumper and Marc weren’t supposed to die, after all we had these miracle drugs. Then my rational mind took over. I knew that the drugs were not the answer for everyone. I knew that friends, while living longer, still faced days where they were overcome by the affects of HIV and the drugs that were keeping the virus at bay for the time being.
Michael Running Elk
The last close friend to die from complications related to AIDS Was Michael Running Elk. Michael was one of a kind. He seemed to have boundless energy. He came into my life first as an employee. He tackled his work with gusto.
Together we traveled to secluded sites all over Central Massachusetts where men would meet clandestinely for sex. We engaged the guys we met in conversation, offered them a safer sex kit, and invited them to a support group we ran. In the city he, I and Willie, (another employee), along with stipend outreach workers, including Marc who I just wrote about, patrolled the late night streets of the city were sex workers both male and female strolled, where men hooked up with other guys for sex, and where Injection Drug Users hung out. We were called the Rubber Posse X when are target audience were adults. On Friday’s the Rubber Posse met high school students at the central bus hub and chatted with students and offered supplies for safety when needed.
We also helped advise a LGBTQ youth group, provided HIV trainings in high schools, and helped run a little theater group called Safe Troupe which put on skirts in bars and clubs and at LGBTQ community events. This ended for me when I decided to move out West here to Santa Fe, New Mexico.
I came back for a visit and stayed with Michael who was a gracious host. He was really exploring his Native American heritage which meant a lot to him. I packed a lot into that visit including a trip to Maine and one to Vermont so he could visit friends while I met up with my parents. After I returned home I learned that Michael was moving to Florida.
In October of 2001 I went to visit him in Saint Petersburg, Florida. I had a lovely week with him and his partner. We visited all sorts of sites including a fun day at the Tampa Zoo where I shot this photo;
After that wonderful week I tried to keep in touch via email. Then Michael had a falling out with his partner and moved to somewhere in Ohio before eventually ending up back in Worcester. I learned through a friend that he died there after complications from HIV/AIDS claimed first his mind and memories and then his life.
Over the last 18 years I have had the opportunity to become very familiar with the continued impact of HIV and AIDS on many New Mexicans. My past work with research, analysis, education and community planning has left me with one unmistakable impression; HIV and AIDS continues to be a devastating problem here for injection drug users, for women at risk and in particular, for the Gay, Bisexual and Transgender Communities. While deaths are down infections are not. In every region of the state men who have sex with men (MSMs) are the highest percentage of HIV/AIDS cases. In fact when I left to go on disability 5 years ago, in Santa Fe County, MSMs and MSM/IDUs represent a significant majority of the Living HIV/AIDS cases.
There are ominous signs on the horizon: throughout the country STD and HIV infection rates in some gay, bisexual and Transgender communities have risen, more folks are having unprotected sex, and a younger generation is becoming sexually active in an era of HIV apathy. Yes, HIV infection is now a manageable chronic disease. That doesn’t mean it’s easy. You have to take antiviral medication for the rest of your life and those life saving drugs come with side effects. There are also newer discoveries about some conditions like heart disease that can become problematic for people with HIV.
As concerned community members, outreach workers, disease prevention teams, health educators, managers, and concerned community members we all need to do a better job in reaching these folks at risk. We should use the example of the intensity of our harm reduction efforts as an example. The hard work of many in New Mexico, working in harm reduction efforts, are making a significant difference in the lives of injection drug users in this state. This same level of commitment and resources needs to be directed at prevention of HIV among Gay, Bisexual and Transgender individuals.
This is my call to arms. I invite you to join or continue the battle against racism, homophobia, sexism and intolerance. I also invite you to empower gay, bisexual and transgender individuals and others at risk with the knowledge, skills, emotional support and self-efficacy to prevent HIV infection.
The AIDS Memorial quilt has grown and grown since that day 27+ years ago when I walked among it’s panels. I have lost far too many friends, whose panels now intermingle with the panels of thousands of others. Let us redouble our efforts to make the quilt a memorial of a past and not an ongoing chronicle of continued devastation.
Back when I lived and worked in Worcester, Massachusetts we met each World AIDS Day. We marched holding candles from City Hall to The United Church of Christ where we had an interfaith service to remember those lost. In fact in December of 1995 we laid out two quilt panels and had people come forward and write the names of those lost. It was as moving as that similar ceremony at the service before the 1987 March on Washington. I remember walking up with tears in my eyes to sign the names of those I lost. I was joined by friends both old and new. Together we shared a collective bond of loss and memories as we wrote on those panels. Here’s a photo of those two panels that are now part of the Names Project AIDS Memorial Quilt:
This month is significant for many faiths. It is the month when Winter Solstice occurs, when Christians celebrate Christmas and when Jewish communities celebrate Hanukkah. As Hanukkah reminds us, the light will not go out. Those we’ve lost lit flames of justice in many they touched. Because of them the world is a better place. It is for us to pick up the torch and continue the quest. In the words of the Peter, Paul and Mary song, “Don’t Let the light go out, it’s lasted for so many years. Don’t let the light go out; let it shine through our love and our tears.”
Marc, Donna, Michael, Michael Running Elk and others. spoke and participated in these services. They movingly shared their stories about how HIV had affected them and those they cared about. Now they are gone but are here as lights twinkling in the sky. Their lights also continue on in the memories of all of us who knew them. Their lives are lights that give us the courage to continue on.
One of those lights was my good friend Marc. Marc was one of the most dedicated and inspirational persons I have ever known. We shared many hours together as we rode to schools where Marc would share his sorry, or walked the streets late at night sharing safer sex information and supplies with those we met, or as he prepared to speak to the crowd assembled to participate in a walk to raise funds for HIV/AIDS care, treatment and prevention, or as we just talked as friends and colleagues concerned about our community. Somewhere he’s dancing in a tutu and wearing a leather jacket in the memories of those that knew him and loved him. So today, In Marc’s memory, who was a proud gay Jew, I say in closing, Shalom My Friends – L’Chaim!