When I was about 18 years old, I found out that my grandfather’s (Papaw), younger brother did not just die of cancer and pneumonia like I’d been told. He was actually one of millions of gay men who died from AIDS. I found out that, in my cousin Dirk’s words, my family and I “come from this thing that was so great, and to deny how great it was is foolish.”
He was a tortured soul. He had a tiny body but a giant heart and an even bigger brain. He earned a scholarship to the University of Missouri – where I myself just graduated from – and eventually studied medicine at Tufts University, going on to work at hospitals in the Boston area including Massachusetts General. He wanted to be a writer, and he was a brilliant pianist, but he became a world-renowned radiation oncologist. And ultimately medicine, the industry he dedicated his life to, let him down.
A doctor who was brilliant enough to help thousands of other people, and he did, but could never help himself. A man who was constantly ravaged by his own feelings and self-image. He was a lot of things, as are we all, but one thing he never was? Whole. To his family in Missouri, he was always Ed, Eddie or Uncle Ed. To those who worked with him, knew him and loved him in Boston, he was only Paul.
Uncle Ed would be 71 years old now. He died in January 1990, three years before I was born, in the AIDS epidemic. I never got to physically meet him, but as I read his words and look through his belongings, I see pieces of myself in him. I just never had the chance to give him a hug and tell him whatever he needed to hear as many times as he needed to hear it.
And so, Uncle Ed, this is my hug. Together, right now, we are going to hug anybody who might feel any of the complicated emotions you felt for each of your 44 years on Earth. We are going to hug them by finally telling the world what you wished you could – your true story.
Ed (far left), Missouri 1972
An 18-year-old Papaw brought Mamaw home to meet his family for the first time when Eddie was nine years old and reading an encyclopaedia on the floor for fun. “He could get lost in his thoughts real easy,” Papaw remembers. “He’d be in a whole different world. Always thinking about things a lot deeper than what I was, things most people don’t think about.”
Papaw loved Eddie, he had prayed relentlessly for a baby brother, but they were never particularly close. So when Uncle Ed called him one night in the spring of 1989 to tell him that he was having health problems, their conversation was very uncharacteristic of their relationship to that point. Papaw was suspicious. AIDS was everywhere at the time, and Uncle Ed had been away living another life. He pressed: Was he gay? Was it AIDS? Uncle Ed finally told his brother the truth.
“He was afraid I was going to ostracise him,” Papaw says, “but I didn’t.”
At the end, Papaw spent weeks by Uncle Ed’s bedside. He tried his best to make up for lost time. And when the inevitable finally came on January 16, 1990, Uncle Ed unexpectedly woke up from his unconsciousness, had a brief conversation with his big brother, and then immediately died. To this day nobody, not even my grandmother, knows what Uncle Ed’s last words were except for Papaw.
One last secret in a life defined by secrets.
April 1998, about a year before Uncle Ed told his brother he was gay, had AIDS and was dying, about a year before Uncle Ed’s double-life came to light, Tracy Chapman released her lead single ‘Fast Car’.
“You’ve got a fast car
I want a ticket to anywhere
Maybe we can make a deal
Maybe together we can get somewhere
Anyplace is better,”
At this time, Uncle Ed was writing pages and pages of notes to himself. He was starting to be inhibited by AIDS, his pre-existing anxiety and depression ramping up. He wrote so much it seems he was hoping writing would will it true. “Try soothing music when riled, upset.
“Relax and calm down when attracted by fantasies that seem unlikely though possible—stop acting as if wishing them to happen should make them so—decide if you really want to expend some energy and risk failure for this.
“Remember: I am a survivor!”
He even wrote to the Assistant Secretary for Health in Washington D.C. on August 11, 1989: “I feel fairly sure, however, that I will probably die within the next few months without some form of anti-HIV treatment.” A fast enough car didn’t exist for Uncle Ed to escape what he was fighting.
The day after finding out Uncle Ed’s truth, my aunt (known to me as Dah) wrote Uncle Ed a letter. She remembers writing to him: “I don’t care how you got AIDS, where you got it, when you got it, it doesn’t matter because you got it. And I’m just sorry we don’t have more time.” From then on, Dah did everything she could to educate herself on AIDS.
That summer, Dah started volunteering at the AIDS centre in Kansas City. Papaw paid for a babysitter to watch my cousin Jillian, who had been born that April, so Dah could spend her afternoons helping people like Uncle Ed. “People just wanted to be able to talk,” Dah remembers now. “Nobody knew what to do with them. Nobody would just listen to them.”
Dah and Uncle Ed wrote letters until he died. She has kept his letters. He had so much to get off of his chest before it was too late, and Dah had provided a safe haven on paper, where he was most comfortable. After his death in 1990, Mom, Dad and my grandparents traveled to Boston for the weekend to clean out Uncle Ed’s condo. On that Saturday night, they were warned by one of Uncle Ed’s friends. “You can’t stay here tonight,” he told them. “You won’t be safe.”
“So we went and stayed overnight at his friend’s house,” my mom remembers, “and it’s a good thing we did.”
Sure enough, people known around the neighbourhood at the time as “gay bashers” had come and vandalised Uncle Ed’s home – something of a sick, cruel celebration of his death.
In October 1990, Mom and Dah went to Washington D.C., where the famous AIDS Memorial Quilt was displayed in search of Uncle Ed’s final piece. Among Uncle Ed’s belongings was a newspaper clipping he had saved from October 9, 1988. The headline read “AIDS quilt reaches president’s doorstep.” Just a couple years later, he was another square on that quilt.
“It was just surreal,” my mom remembers. “I remember just feeling like everything around me was just a blur because I just wanted to get there and see his piece. I couldn’t get to his piece quick enough. Because I just wanted to feel a connection with him. I needed to be a part of that part of his life.”
When my aunt and mother finally found Uncle Ed – or Paul’s – square they stood over it, stared at it and wept. Everything had finally sunk in.
September 1, 2016: Justin Bieber performed an acoustic cover of Tracy Chapman’s ‘Fast Car’ on BBC Radio 1 Live Lounge from his home in Los Angeles, California.
“So I remember when we were driving
Driving in your car
Speed so fast felt like I was drunk
City lights lay out before us
And your arms felt nice wrapped around my shoulders and
I-I had a feeling that I belonged
And I-I had a feeling I could be someone, be someone, be someone,”
I listen to Bieber’s cover of ‘Fast Car’ at least once a day. It hits me in a way I didn’t expect considering I hadn’t known this song existed before hearing Bieber’s cover, but I believe it’s my uncle giving me something. Telling me to listen, telling me to do what he couldn’t and assuring me that I don’t have to die unfulfilled like he did. Get out, find somebody to leave with, arrive somewhere better and display the essence of who you are with clarity and purpose.
“I just want to allow his spirit to be alive,” Dirk says. “He’s not dead. We owe him to be the best artists we can possibly be.” I have a chance to do what my uncle and millions like him could not do. I have to finish what he started. And it’s not only about the people who have gone. It’s about all of us who are living and breathing in the world at this moment in time with a chance to chase fulfilment, live freely and create lives worth carrying on generations from now.
Words by Megan Armstrong