Trevion: Mind your business
“I don’t have much to say as far as how or when I tell people about my HIV status. That business belongs to me, my family and my potential sexual partners. And I honestly don’t care, except to tell people before we have sex and with the intentions to help others. I don’t just talk about it without purpose. But I do have something to say on the topic of “mind your own business.”
Recently, my life has become a living hell. Early on recent morning, I recieved a text from my friend Jelanae, woke up to it, really. I stretched, looked at the text and nearly dropped my phone. The text killed me inside: ARE U HIV+?
It had gotten out, beyond the people I had told out of wanting to be law binding. Someone had…and has…been texting my business to everyone they know. And other, in turn, are forwarding the texts to their friends, and so on, and so forth. Tears began to flow from my eyes. How could someone do this to me? I follow the rules…the law. I tell people. I make sure they know before I even engage in sex with them. And I don’t tell people who don’t need to be told. So how could I be so unfortunate to get a curse such as this?
I begged my friend not to tell a soul and he informed me that it is a federal offense to spread that kind of personal information about someone unless you are the person themself. And I didn’t know that. My friend made sure I was calm before we hung up and I cried, then went back to sleep. All I had were nightmares though. And I just couldn’t understand why someone would try to ruin me like that.
Spreading peoples business is not OK. I can’t describe how hurtful. Please just know first off that my self esteem is better than to try and kill myself because of this…but if you think this is OK, I’ll let you know that someone else just might kill themselves due to your stupidity. It’s not cool and we as a whole of the HIV community don’t appreciate it. And when you’ve been as sick as I was, almost dying and feeling as though I had nothing to live for…then and only then can you go around spreading that shit around about others. Until then, stay out of it!
I’m getting upset now, so I’m going to stop typing. But I really need you to think about what that type of thing could cause. This could mean the end of someone’s life…please…think about that. We are people, just like you. I’m not going to keep saying this…it seems like I say it everytime I even mention the topic…so just take that into account.
HIV lives matter too! : :
Norena Gutierrez: Who and when to tell his business
When Trevion was diagnosed in October 2014 as HIV+, our world went upside down for not only a few weeks, but for a few months. Coming to terms with what HIV+ means for a 17-year-old who has his whole life ahead of him was daunting for me, and I was just the sideline support system and a mother who didn’t know quite how to support him, much less myself.
After recovering momentarily from the shock of the doctors informing Trevion of his status and the miracle recovery he made in literally days, it was clear that sharing Trevion’s status with family members and close friends was going to be nothing less than tricky. I remember asking him, “How do you want to do this sharing of your status now?” I reassured him that whatever his answer would be, I would honor and adhere to it. The options: 1) be completely silent or 2) tell everyone. There was clearly some other opportunities in between those two options, but it was uncertain what the criteria would be to share this important information about Trevion’s health…and when.
Trevion thought about it for a couple of days. During those days, I asked him for permission to tell my best friend as I was needing support and I felt alone. He agreed that I needed a friend, but asked me to ensure my best friend of 30+ years would swear to complete confidentiality. Telling my best friend Joe was overwhelming, and he admitted that he didn’t know enough about HIV to even ask a thoughtful question. However, he listened as I sobbed and I educated him between the sobs.
I arrived at the hospital during week two of Trevion’s stay at the Levine Children’s Hospital and Trevion was in a positive place. He wanted to go eat sushi at the cafeteria and he had made his mind up. “I want to be an advocate for HIV+ lives mattering. I want to help educate young people my age and help remove the stigma that exists in our society.” I took a deep breath. I knew this was big, and I was quickly becoming aware of how little the general population really understands about HIV. I asked in good motherly fashion, “Are you sure?” There was a resounding “Yes, I am absolutely sure.” I was never as proud of my child as in that moment. I knew that sharing his HIV+ experience would save lives. And almost like he read my mind, he blurted out after inhaling his California roll with too much wasabi: “If I can save one life, Mom — it will be worth sharing my status, no matter how much pain I may have to endure in the process.” With this green light to share his status with our family, he announced that he wanted to tell his brother, not have me do it. He called his brother Richard when we got back to the room. Richard was quiet and said, “I am sorry Trevion, is there anything I can do?” Trevion had tears in his eyes and said, “Just be my brother still, that’s all.” Richard who is 18 months younger said, “You got it, bro.” I saw relief in my son’s eyes.
Later that evening, I got on the phone to my mother first. I shared why I had not been able to call and that Trevion was in the hospital. I shared his diagnosis. She said, “Well, that’s that” and changed the subject to the weather in California. I was stunned. Discussion over.
I called my sister in Boise, Idaho. She wept with me on the phone. She has a dear friend of over seven years who has been successfully living with HIV and she has learned a lot about HIV by being supportive to this dear friend. She reaffirmed that the current medication is amazing and there are technology advances that are in the works that will ensure that Trevion’s life will be lived to the fullest. She affirmed, “all is well my dear sister, and Trevion is alive and this is the gift, all else is of no consequence”.
My sister Dorothy was by far the most supportive of my family. Several weeks later, I had enough courage to call my sister-in-law in Las Vegas who is married to my brother who is a Mormon Bishop. This was by far the most anxious call to make. It was easier to call my brother’s wife and let her share the information with my brother. She is the loving mother of six children and immediately connected with any child who is sick is loving and deserving of their support and that she would be praying for a full recovery. She asked, “How are you holding up?” That phone call was over 10 months ago, and never once has my brother called to see how my son or I am doing. I justify the silence as to the fact that he is really busy running a multi-million dollar business, managing six children’s school activities and being a very active leader in the church.
With Trevion’s permission, I have been very careful about disclosing his status in any situation. It is out of respect for him. It is his journey to share the information and educate. In a miracle six months, my son went from being on the doorstep of AIDS to being “undetectable.” This means that his immune system is calm and he is at a viral load of zero (when he was diagnosed six months before it was eight million).
Sharing our journey here in qnotes has been a way that Trevion has kept his promise to advocate. He is my hero, he is my child and he is a young and positive advocate. : :