Since I was diagnosed with HIV 20 years ago, my life has been an incredible journey -- filled with joy, love, anger, and a whole array of emotions. One of the hardest challenges has been disclosing, not only to potential intimate partners, but to friends, family, and co-workers. At one point, I felt I just had to accept that God did not have someone in mind for me to spend the rest of my life with. But what's that old saying? "When you finally stop looking it finds you." Boy, did it find me! I can see that because of HIV I learned how to live my life -- and that's why I was ready for Tom when he entered the picture.
One of the things I learned was that the way people respond to my HIV status doesn't have to do with me personally. They're trying to figure out how they can deal with it. But accepting that is easier said than done, because rejection still hurts. I've decided that the only people I want in my life are those who fully support me. After telling potential partners that I had HIV and seeing them run screaming for the hills, afraid that I infected them by just holding their hands, or having them stay and then ending it myself because of their baggage, I resolved to always just say it up front.
When Tom and I started talking, I put it right out there. I knew to look at how someone responded. If he was completely on board with no questions, I was scared! If he couldn't find the door fast enough, then so be it -- don't let it hit you on the way out. I live without shame -- if you can accept me for who I am and what I bring to the table, let's get to know each other.
I found that Tom's baggage wasn't any worse than mine and the relationship of my lifetime began.
When I told him, there was a pause and then: "Okay, what does this mean for us moving forward? What do I need to learn? How can we be together?" All amazing questions, and he ended with: "I want you in my life. I want to learn how to deal with this and how to incorporate it into our lives." He was the first man to see me completely -- not just my HIV.
I never felt I had to reassure him, but I have taken the time to continue educating him -- not only about my life but about the community as a whole. In the beginning, I did have to reassure myself, though. I was always waiting for the other shoe to drop -- for Tom to come to me and say he was sorry, but that after giving it a lot of thought this was just something he couldn't do. It wasn't until a year and half ago that I finally realized he was "all in", had both shoes firmly on the ground, and wasn't going anywhere.
The first time we had sex, I'll admit I was scared. I was so afraid he was going to change his mind and decide this wasn't worth it. Or that he would suddenly freak out and take the "forever shower" and scrub and scrub! But he didn't, and over the years, the sex has gotten better. Our lines of communication are wide open and we are able to talk to one another throughout sex. We even laugh and then stop and say, "Are we supposed to be laughing during sex?" Yes, because we enjoy one another so much.
I'm actually more careful during sex, because if Tom were to become infected I'm not sure how I would handle it. He says if it happens, it happens, but we know what we need to do to protect him. Sometimes, I've even had to play "HIV cop" to make sure that no matter what we experience, Tom is safe.
Eventually, we decided that my undetectable viral load and the fact that I am a woman lowered his risk enough that we could take off the condoms. That decision is not for everyone, and each couple needs to make an informed decision after talking to their doctor. If my viral load was detectable, safer sex would definitely be required. I will say that the first time we opted not to use a condom was an anxious moment for me. But we educated ourselves, we talked to experts, and did research. So we both felt comfortable with the decision.
Apart from sex, we both have to deal with me sometimes feeling sick and having side effects from the medications. And then there are the plain old issues that affect any relationship: finances, kids, jobs, family, communication. I had surgery and developed a staph infection. I had to have a second surgery, keeping me out of work for four months. Things like that can spiral me down into what I call a "mini depression". I always know I will get out of it, but I get scared and withdraw, which affects our relationship.
Of course, disclosing to your partner isn't the end of the issue. I've told everyone in my life, but telling people in Tom's world has been in a different time frame. We told his sisters and brother and slowly word got out, but no one treated me any differently. We told his sons a few weeks before our wedding and found out that his ex-wife had already told them without mentioning it to us! So they just said, "Yeah, we've known for a while." I was even more impressed that they knew and never mentioned it nor treated me any differently. After we were married, I was interviewed by a local news station and Tom called his buddies so they wouldn't learn about it on the news. They have all been extremely supportive.
Until I met Tom, my life literally revolved around HIV. I was the Executive Director of a not-for-profit that worked with women living with HIV. I never really had a break from HIV. Tom is a sports enthusiast, and he helped me rekindle my love of sports. I'm now a high school volleyball official and a track and field official. We travel all over, officiating disabled sporting events -- in fact, Tom first told me he loved me on the Great Wall of China, when we were there for the 2008 Paralympics.
I have been extremely blessed. Before I met Tom I appeared in a local video and said that I would never give up on eventually finding my Scarecrow, since "The Wizard of Oz" is my all-time favorite movie. Tom is my scarecrow! My favorite Broadway show is "Wicked" -- in that show, Elphaba feels no one could love her because she's different. Finding someone who is able to look at life differently, look at me fully, and love me completely is the greatest blessing I could ask for.
I had never dated anyone with HIV before, and I found out about Shannon before we started dating. We had exchanged emails after I found out about a fundraising event her agency was having. Shannon told me in her first email that she started the agency and did so because of her own status. She experienced first-hand the lack of services for women with HIV in Colorado and did something about it.
I hadn't thought about getting involved with anyone, but then I saw her at the fundraiser. As the night went on, the more time I spent with her the more I was drawn to her. We had a lot of common interests, especially sports. We're both highly active in the areas of social change. She has a fantastic sense of humor, dignity, and pride -- and she's beautiful. So when I put all of that together I knew the HIV was not a deal breaker -- it was something we would discuss. I would learn to handle it and deal with it in a responsible and respectful manner. I lost my brother to AIDS in 1996, and that's allowed me to be empathetic and open to people living with HIV.
The first time we had sex, I was nervous and excited like anyone is. We knew what precautions to take and were prepared because we had had the conversation beforehand. I trusted her knowledge and expertise and that she would not put me in a situation that was unreasonably harmful or unsafe. Over time, it continues to get better.
The first time we had unprotected sex was right after the Swiss study came out, which found no infections in "magnetic" couples in which the partner with HIV had an undetectable viral load. We talked about the study and what that meant for our relationship. Shannon's adherence to her medications and appointments, leading her to having an undetectable viral load, led to us having unprotected sex for the first time. I have never felt fearful of becoming HIV positive.
I'm mindful of Shannon's health and ensure that she stays as healthy as she can. She knows her body and her health, and I have to be active in helping her maintain it. Our lives can be very stressful, and making sure that she has downtime is crucial to not only her physical health but her mental health as well.
The only time Shannon's medications affect our relationship is when she has difficulty getting them filled or forgets to bring them along. I specifically remember a trip a few years ago to Vancouver when she forgot her medication and we had to drive across the border to Washington to get her prescriptions filled. Now I make sure that her medications are on our packing checklist!
Shannon recently was in the hospital, and her door was marked to let the staff know that she had HIV and to take precautions when in the room. That made me angry, knowing how far we have come but being shown in an instant how far we still have to go. I am glad how far society has come in being informed about HIV, but it's frustrating to see pockets of misinformed people -- especially in the medical field.
Over the years I have been telling friends and family. Shannon had always told me that it was up to me when to tell my two sons. She came to me a few weeks before our wedding and asked that we tell the boys -- everyone in her world knew and she wanted the boys to know. But we haven't told many of my casual friends or acquaintances. It isn't a priority for us. We're not hiding it. Who knows? They may already know -- it just doesn't affect those relationships.
Our only bad reaction came when my ex-wife did an internet search on Shannon and found out about her status. She told my sons before Shannon and I had a chance to. I am so proud that my sons didn't freak out or react badly in any way. But everyone who is active in the community or has HIV associated with their name probably knows that if someone searches for them on the internet they can find out your status.
I've have learned that love takes different forms. It can be shown in different ways and experienced in different ways. The power and the will to overcome problems must be shared -- it's not an individual endeavor. I've learned that falling in love with someone's soul and inner spirit is a much deeper experience than I could have ever imagined. Finally, I'm proud that Shannon works with people living with HIV and allows them to see that there is life after diagnosis. She continues to amaze me with what she knows and how she's able to teach others about HIV. She has truly taken lemons and made lemonade.