I listened to the message on the answering machine and immediately started dialing. Tim’s voice was distant; controlled. Something was wrong.
Tim answered and we talked briefly before the sad news came out.
“Steve Carleton died today”, he said. “I know you were friends and I thought you’d want to know”.
I was so shocked I made him repeat it, and as we talked the story unfolded.
Steve had been feeling sick and friends talked him into going to the hospital, where he was diagnosed with pneumonia and admitted. That was three weeks ago. Today he died there of complications caused by AIDS.
Tim and I talked a while longer then hung up, but I was still in stunned disbelief.
I had just seen Steve – in fact it must have been only days before he entered the hospital. He was laughing, joking…typical Steve…loving the limelight and making people smile. We had shared a drink and talked about the German Shepherd Rescue; how he wanted to help save a few dogs and take them to his family’s farm. After we talked, he floated around the bar greeting others, buying drinks, and leaving a trail of laughter and smiles in his wake. Life seemed good and the possibilities, had I thought to consider them, would have seemed endless.
They weren’t. Not for Steve.
I’ve had a good life so far, and have had to deal with the deaths of relatively few close friends or family members. Perhaps the hardest was the death of my Grandfather, who was one of my best friends and who I still miss on an almost daily basis. As hard as that was, there was a kind of innate sense that it was ok; that it was the natural ending of a full and well-lived life. Very sad, but not entirely unexpected.
Steve’s death simply felt wrong.
There was nothing about Steve that gave any indication that he was sick. I didn’t know that he was HIV+, and the truly sad thing is, neither did he.
He had never been tested. Friends say he was afraid to be. Unable to get my head around the fact that he’s gone, I’ve been asking myself over and over, “What was he afraid of? Why would he not get tested?”
While no cure currently exists for AIDS, it is not the immediate death sentence that it once was. There are medicines available that could have prolonged his life – possibly long enough for a cure to be found. Many of these drugs are incredibly expensive. Maybe he was afraid that if he were positive, he wouldn’t be able to afford to pay for them and so would have to go on knowing, but unable to change the situation.
Perhaps it was the fact that in North Carolina there is no anonymous testing. If you go to a clinic to get tested and are found to be HIV+, it is reported. It becomes a matter of record. Maybe he feared that the information would be used against him at some point, and that he would be classified and categorized by a system out of his control.
Maybe he was afraid that once on record, the information would find its way to others.
Like his family.
None of them even knew that he was gay. They found out when they came to visit him in the hospital, only days before he died. Before they lost him forever. Could he have been more concerned about their reaction than for his own safety?
I don’t know who else was unaware that Steve was gay. Until today it never entered my mind to even care. I have straight friends, gay friends, and friends whose orientation I honestly don’t know. My gay friends vary in the degree to which they’re “out”, and I can understand that. Being gay makes you an outcast to some parts of society…reviled by the religious right, hated blindly by the ignorant or close-minded. Pretty easy to see why some people wouldn’t want to advertise.
Fortunately, it can also you part of another, smaller, more open community. One not without its pettiness and drama, but where on the whole people are accepted and differences are embraced.
But there’s a big difference between just being gay and being HIV+.
There’s a stigma to HIV and AIDS. It’s the Bubonic Plague of our era; causing irrational fear and panic throughout our society. It can cause you to be outcast not just from the conservative population, but from all of society, and the gay community as well. Better perhaps, to risk dying among friends than to live out your life in isolation?
I can see why Steve might have feared that. It would be hard to trust even your friends’ reactions; the very word carries such incredible power.
Do you doubt that?
Just say, “AIDS” loudly in a crowded room sometime, and watch the heads turn. Observe the fear in the faces. Say, “I have AIDS.” in a mock conversation and you can watch the people become uneasy and move away. Mothers will gather their children close. The fear is almost palpable.
Steve was afraid to get tested, and as a result his life ended only 30-some years after it began.
“At least”, some will say, “he lived it to the fullest – right up to the end”. “You should be happy for him”, they’ll say.
I’m glad he didn’t suffer, and I am very, very glad that he lived his life so well – right up to the end. I’m glad he didn’t linger, wasting away slowly before our eyes as so many have done, and continue to do. But how could I ever be happy that such a bright, shining light could be extinguished so easily, so senselessly?
Steve’s life ended too soon, but it didn’t end because of a terrible, incurable disease, and it didn’t end because of a poor choice on Steve’s part. The medical report may have attributed death to “Pneumonia”, or “Complications due to AIDS”, but his real cause of death was fear.
His own fear: that of being labeled, of being abandoned by family and friends, of facing the ravages of the disease itself.
The fear of others: that they too will catch the disease, and so would go to great lengths to remove him from their lives.
AIDS and HIV are surrounded in fear, and as if the disease itself were not enough, the fear keeps us from acting.
We need to work to remove this debilitating fear by educating ourselves and others. We need to recognize that AIDS, like cancer, is a disease that affects all of us. It doesn’t care if you’re a man or a woman, adult or child, gay or straight.
Like cancer, it can be detected, and with early treatment many people can live long, full lives. We need to re-think and revise laws that might deter people from being tested.
Unlike cancer, AIDS has the benefit that it can be prevented. Through education and increased awareness of the facts, people can be taught how to avoid the disease, not the people.
We can all work to stop the spread of this disease, and together we can find a cure. There are countless charities you can support, and fund-raising events to participate in. If you don’t have the money to spare, volunteer at a hospice, as fundraiser staff, or in one of the many walks and bicycle rides to raise funds.
Our possibilities are endless, but until we work to remove the fear and face the disease, more bright, shining lights will be dimmed, forever.
Thank you for writing this.
The two most fulfilling things I’ve ever done in my life were the California AIDS Rides in 2000 & 2001. It’s 7 days, 575 miles and goes from San Francisco to LA.
And the very reason I ride is for people like your friend Steve.
If anyone is interested in riding, I highly encourage you to do so. It may seem daunting, but anyone can do it. And I guarantee it’ll change your life in a million ways.
Tracey – On the contrary, thank you for reading it.
Matt (and others) – Being on the east coast, I’m planning on doing the Norfolk to DC AIDS ride this summer. 4 days, 330 miles. A friend convinced me to do it after he worked crew on it last year (used to be Raleigh to DC) and said it changed his life.
There are other rides around the country too. If anyone wants info, e-mail me.
This sounds like the type of thing that could redeem me from my cynical path to damnation.
Whoa, Mike. Don’t go blaming that on me! (Besides, there are still plenty of paths left :o)