June 17, 2004

Getting painfully personal
Woman uses her story about AIDS to help save others

By Kymberli W. Brady
Staff Writer

“How long do I have left to live?” Julia Lane remembered asking her doctor, as she spoke to eighth graders at Bret Harte Middle School last week about her life since contracting AIDS. She shared the raw and very personal story of her ongoing fight for survival—a story she hopes might someday save their lives.

Looking at the slim, 37-year-old woman, you wouldn’t know Lane contracted HIV 17 years ago, and has lived with AIDS for the past 12 years. She takes 13 pills each day at a cost of over $42,000 a year. Her fight for survival has included 15 hospital stays, 10 bouts with pneumonia, three eye surgeries, bacterial infections, hives, rashes, and kidney stones. Her lungs have collapsed four times and she has gone blind in her right eye. Currently, she is enrolled in a clinical trial in an effort to stay one step ahead of the medical curve.

HIV is a virus that attacks the body’s T cells—white blood cells that help battle disease. Once it has destroyed enough T cells, the body’s immune system becomes suppressed and is susceptible to approximately 25 different HIV related illnesses. An AIDS diagnosis is established after someone with HIV contracts one of those illnesses.

Although diagnosed with HIV at 20, Lane thought back to junior high and high school, where admittedly, her struggle for acceptance resulted in risky behavior. Wanting to “fit in” led to shorter skirts, high-cut tops, make-up and ultimately, unprotected sex.

Looking back to her first sexual encounter, Lane agreed that it was for all the wrong reasons, most notably, her need to secure their relationship. “I thought if I had sex with my boyfriend, it would create this bond between us,” she explained. “He broke up with me the next morning. I felt so used.”

A deep depression ensued and although she had been accepted to UC San Diego, Lane no longer wanted to attend college—much less get out of bed in the morning. “I wish I had talked to my mom about these things,” she said. “It would have been really hard, but she would have helped me find a counselor who could get me through it. Instead, I got another boyfriend.”

Even though a second relationship ended her depression, it was an unhealthy one. Lane decided that a bad one was better than none at all, so she tolerated the verbal abuse and infidelity. “I hated it,” she exclaimed. “But I hated the depression worse.”

One year later, Lane met Richard, whom she called her soul mate. The couple purchased their first home together two years later, while talks of marriage and children took their normal course in the budding romance—plans for the future that came crashing to a halt one evening, when Lane discovered a small lump under Richard’s arm. Eight months later, he succumbed to cancer.

The day after he died, she found a small piece of paper among his personal belongings. Along with a 900 number, the message read:

Bisexual, white male. Tall, attractive, closeted. Must be discrete. Call Richard.
“This man that I’d been with for almost four years had a secret life,” she exclaimed.

Lane discovered that Richard died of an AIDS-related cancer and she knew she had to be tested. “I remember thinking there was no way I could be HIV positive,” she said. “I worked out. I never got sick. I knew my body really well. If there were something wrong, I would have been able to tell.”

The test results however, were positive. At 20-years-old, instead of making plans for her future, she questioned how long she had left to live.

Telling her family was admittedly the worst day of her life. “Could you imagine if someone in your family told you they were HIV positive?” she asked the class. “What if you had to tell your family and friends that you had it?

That’s the thing about this disease. It’s bad enough that it had to affect me, but it didn’t stop there. It affected every single person that cared about me.”

Fearful of rejection, Lane’s illness remained a well-kept secret for several years, until she fell ill with a form of HIV related pneumonia. Two months of raging fevers, night sweats and difficulty breathing nearly took her life. Later, she contracted a virus in her right eye and treatment meant the insertion of a catheter into her chest so that intravenous medication could be administered directly into her heart twice each day—a painful and treacherous process that lasted eight months.

Lane continued to share her more of her life-threatening experiences with the class, including the severe side effects of the drugs and the sacrifices she has been forced to make. “Does this look like the answer?” she asked the students. “The awesome thing is we know how HIV is transmitted and we know how to protect ourselves.”

Lane admitted that when first diagnosed, her dreams of getting married and staying alive all but vanished. “After five years, I realized that there was a lot more hope in my life and things turned around for me emotionally,” she said. “I went back to church and found this amazing faith walk that I didn’t even know existed.”

During that faith walk, Lane met her husband Mark, and they have been married for the past four years. He remains HIV negative today, due in large part to their ongoing commitment to protected sex through the use of condoms, along with constant communication. “It’s not easy being married,” she said. “We’ve had to work through a lot of very difficult issues and it’s scary for him when I get sick.”

When asked about having children, Lane admitted she always thought kids would be a part of her life, yet her decision not to have any has stemmed from her own instability. “It’s a miracle I’m still here and I can’t say with any certainty that I’ll be here next year,” she said. “So while it would be wonderful to have a baby, I think it would be really selfish.”

Although no longer able to work, Lane decided to seize every opportunity to educate the public on how to stop the spread of the deadly disease. In 1996, she began speaking publicly about her ordeal and has shared her story with over 400 schools and organizations to date. “You can stop HIV,” she asserted. “This does not have to happen to one more person if you take responsibility for your own bodies. You have that power. I hope you will all embrace it and not let this happen to you.”

Her message to the kids was clear. “Take care of yourselves and love yourselves,” she said. “I didn’t know that in junior high. I thought my only value in a relationship was what I could give to my body, and that is so not true.”

“This went along really well with our sex ed class because it taught us to abstain from sex until marriage,” said eighth grader Gina Giovannetti, who realized that one night of fun and unprotected sex wasn’t worth the risk. “It makes me think more about it.”

“She really let me know what the consequences were of having sex and what a personal story of having AIDS was,” added Stace Klinger. “I had some idea what it does to you, but I didn’t know about all the medications you have to take and that the consequences were so severe.”

When asked if she had any regrets, Lane said she used to ask herself “what if?” time and time again. “That will kill you,” she said. “The best I can do now is forgive Richard, forgive myself for the mistakes I made, and be grateful that I have today.”