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by Jessica Carreras
Through my work at Between The Lines, I’ve met quite a few people who are HIV positive. However, I’ve never lost a family member, lover or close friend to the disease. So when I found myself getting misty-eyed and somber when thinking about World AIDS Day this year, I was surprised.
Then I figured out why.
In the late 1970s until 1984, before I was born, my parents and two older brothers lived in San Francisco. During this time (and for several years before and after it), my dad was a heroin user, injecting the drug daily, as was his brother and his sister and many of my parents’ friends.
They were high. They were careless. They shared needles. And just about every one of them ended up with Hepatitis C – my father, my uncle, my aunt and my mother’s best friend included.
On May 20 of this year, my dad passed away from liver failure due to that disease. It was a long and painful deterioration, with months spent in the hospital. It shook my world unlike anything I’ve ever experienced, and it still hurts every time I think about him.
HIV is a horrible pandemic. Over 33 million people live with it, and over 5,000 die from it every day. There are still, 30 years later, so many questions and issues to resolve. There are still lives being lost. There is still fear, stigma, ignorance and shame.
At an HIV/AIDS community discussion at Affirmations last week, someone asked,
“What can I do to help as someone who has never been affected by AIDS?” There were many great ideas and thoughts shared that night, but one rang truest with me: We’re all affected by HIV/AIDS.
My family’s story is not so dissimilar to that of the lives ravaged by AIDS.
My father was sick for my entire life, but was too afraid to go to the doctor and find out what was wrong with him. When he was finally diagnosed, my mother (now divorced and remarried), brothers and I all rushed to get tested. Were we infected? Had we put ourselves in danger? What did this mean for us? Could I tell my friends? Could I still kiss my dad?
Thankfully, all of our tests came back negative. Then I set out to learn as much as I could. I did research. I met with his doctors. I asked questions. I tried to come up with a plan.
Unfortunately, my father’s combination of poor health and late diagnosis meant that there were no options but to wait and make him comfortable. He survived much longer than anticipated, but when he died, I was left with a lot of questions and pain. Why did he make the wrong choices? Why did he wait so long to find out? Why did he get infected? Why did he have to die? I was hurt, embarrassed, angry and lost.
Does this story sound familiar?
All of us will know in our lifetimes what it’s like to lose people we care about, whether it’s from heart disease, Hepatitis, AIDS, or just old age. All of us will know what it’s like to be afraid and angry, to have unanswered questions. But what if you were losing loved ones by the dozens? What if you feared trusting your partner? What if your anger came from being diagnosed as HIV positive?
For millions of people, that’s part of life.
My father didn’t die of HIV, but his death taught me a lot about why I should care about this disease. Because I know what it’s like to be angry and afraid. I know what it’s like to feel like someone has been taken away from you too soon by something you have no control over. I know what it’s like to feel helpless. And though it’s an impossible wish, I don’t want anyone else to have to feel that way.
But we’re not helpless, and I’m thankful I know that now. We can donate money and time. We can spread awareness and squelch misunderstanding and fear. We can lobby for needle exchanges and more funding. We can honor World AIDS Day (and World Hepatitis Day, too) and remember the people we’ve lost. We can channel our anger into making something happen.
And we should, because no matter who you are, HIV/AIDS affects you. Even if you don’t know it at first.