Trevion: “The Issue of Tissue”

Within the hour of being diagnosed, I was on YouTube. Checking out testimonies and speeches, researching misconceptions about the virus. Trying to cope in any way I could. But it seemed so hopeless. Most of the people who were talking had already been through the “sick phase,” as some call it. Damn. I wanted to know how to process this, how to really deal with the stress that was inevitable. I didn’t care about how people were doing now (with all respect). I wanted to know how to get through it.

My mom asked me if she should get tested for HIV. What? And for what? We didn’t exchange fluids in any way, shape or form. I was already grossed out about blood and things, so there was no way she would have gotten it from me. On top of that, I felt betrayed that she would even think of getting tested. It was as if suddenly my mind erased all the good that had happened, and now I felt like my mother was disgusted by me. Like HIV was going to be the final straw that made her stop loving me. I was so upset, that I lost it one day in front of the nurses and cursed her out. When you are adopted, if you ever really want to hurt your mom, you say the meanest thing you can say: “You are not my mother and you never will be.” She didn’t say a word, she turned around and walked out of the room and went home. There I did it, I thought. Now she will really abandon me. I have HIV.

But she stuck around. My mom refused to let me fall, even when I didn’t want to live another day. She loved me every day. It was the hardest moments of my life thus far. The doctors wanted me to “focus myself,” so they took away all my stuff: my phone, my internet privileges, my music. For once, I was truly alone and not because I didn’t have my phone or the internet. My music was important to me, but that wasn’t it either.

I felt like the nursing staff started treating me differently. It is what it is. Yeah, there were a few nurses and techs that helped me along the way and I could tell they really cared. But a lot of them, I think, just didn’t know how to deal with me. And so, I shut them out before they could shut me out.

I would like to say I made it work, that I was nice and kind to the staff on the ninth floor. But that would be a lie. I lashed out. I was in a scary, emotional place where I needed something to distract myself from what was going on. It was overwhelming. I needed music, talking to my friends, anything to make me feel normal again. I needed to feel confident in myself again. But that wasn’t going to happen any time soon. The truth was, I had just been told I have HIV. I was learning that it is a long, long process to deal with — like a life time, and I wouldn’t admit it and I am not sure I could verbalize it, much less process it. It was another six weeks before I could even accept the real fact that I am HIV-positive.

Finally, it was D-Day (Data Day) in my room on the ninth floor at Levine Children’s Hospital. I would be getting information on my health. They would finally be telling me something other than “take your meds.” (Which is still important, people. If you have it, take them!) I was excited to know something new and to learn more about my new illness. When palliative care came to see me, I was all pumped up for the info. Why? No clue.

We reviewed where I was — dangerously close to AIDS when I was diagnosed. Another thing where they just spit it out. No sugar coating, no smiles. They said I had a CD4 count of 230. And a viral load of 8,000,000 (whatever that was). The “difference” between HIV and AIDS, is a CD4 count of 200 or below (AIDS) or 205 and above (HIV). So, right then and there, I stopped being pumped up, and didn’t want to know anything anymore. I’m done. I hate this place. I hate this… everything.

The tears came at the weirdest moments. I don’t think there was necessarily a reason each time. I don’t even know if it had to do with the HIV. I was just emotional. What I do know is that at those times, I just needed some tissue. Or toilet paper. Or a napkin. Anything that I could wipe my face with. I remember this one time, I was so upset by this issue of tissue, that I threw everything out of the little drawers. I just wanted to wipe my face off. That’s all I wanted. But nooo…. there just had to be no tissue in the whole damn room.

So, I used my sheets.

Norena: “No damn tissues”

HIV treatment began the afternoon Trevion was told of his status. Within a couple of days, he was feeling substantially better. Tre said he felt better and his spirits, well, I would say they were flat, at best.

I pray three times a day for about 145 people for miracles of health, abundance and love. With the news of Trevion being HIV-positive, I couldn’t pray for anyone. Not even for me. Not for my child. I had lost my spiritual connection. I wasn’t angry at God, I wasn’t anything. I was just trying to get through the day.

I also realized I had no information about this whole HIV thing. My friend in California said I needed to get tested for HIV. I reassured him I was not having sex with my son. He said, “You never know, you live in the same household, you could get the virus somehow in the house.” I thought to myself, “I don’t think that is how it works, but I better confirm that.” The doctors had reassured me on the “HIV+ Day” that there was a team that would work to educate me and answer all my questions. I felt like I really needed them now, we were going into a second week of HIV shock fog and I hadn’t seen anyone. I called the head nurse. She perused the file, “Oops, looks like we didn’t get that scheduled, let’s make a phone call and get that underway.”  Yes, “let’s” — I am drowning here. I am now catastrophizing on an hourly basis. I am making stuff up and I have no idea how to help my child.

I walk into Tre’s hospital room. It is a teenager mess, very similar to the one I have at home. “Hey, mijo, how ya feeling today?” I ask in my most loving, HIV-positive voice — even though I am reeling from the news that I just got fired for not making my sales quota (due to being at the hospital so much for the last 20 days). And, as if that wasn’t enough, we are being evicted from our apartment for a disturbance Trevion made a day before he went into the hospital.

Trevion grunts in reply and gives me a halfhearted hug. Okie Dokie. I will be quiet. The nurse walks in to inform me that the palliative care and HIV education team will be able to meet with me and Trevion tomorrow at 2 p.m. Great. I look at Trevion, “What’s a palliative care team?” He dryly replies, “The in-case-you-die people.” Oh. I decide to not ask any more deep questions.

Meeting the palliative care team was awkward as it was without Trevion to start. They started with how they can help: talking, educating and connecting me to resources. I had been so brave these last two weeks with not a reaction at all. But I knew that I was not going to make it through this session without some tears. I surveyed the room for tissue. Nothing obvious or near. I know there is toilet paper in the bathroom, but I will have to make a huge dive to get there. The counselor says “so, before we start to answer all your questions, how are you doing really?” That’s all she had to say. “Not so good,” I said, barely getting it out as I started to sob unconditionally. There are no damn tissues anywhere. The doctor and the counselor start to scramble for some tissues, but they don’t see anything either. I am using my fingers to catch tears, but then the nose starts dripping uncontrollably. I finally use my sleeve and then the top of my shirt. The doctor returns with the tiniest box of tissues I have ever seen. Maybe there are five tissues in it? I open the little red box and I catch my breath, but then another wave of tears. “I can’t lose my child,” I blurt out as the thought is racing. More uncontrollable sobs. The counselor runs out to get another box of tissues. Finally, I feel like the tears are slowing. The counselor is coaching me to take deep breaths. I compose myself. I finally say with a smile, “Yea, I am doing OK.” We all have a good laugh.

I start learning about viral loads and CD4’s and what to expect as Trevion starts to respond to the medication. They suggest I reach out to the Regional AIDS Interfaith Network and the PowerHouse Project for more information and support. I ask about getting myself tested. They clarified that it would be for my own health and as a Latina in her 50s, I am one of the target populations that is most at risk. What?  Note to self: find out more about that later. We decide to meet in two days and continue the conversation.

Trevion’s viral load was eight million parts and his CD4 was 230 on the day he was diagnosed. The viral load measures how much virus is working in your system and the CD4 measures the strength of your immune system. A normal immune system is 700 to 1000. When Tre was diagnosed, his CD4 was on the doorstep of AIDS which is classified at 200 and below. His viral load was extremely high considering that one can be HIV-positive but be “undetectable” at 20 or below — even zero. I was certainly learning.

Armed with new information, an ugly cry out of the way, no job and an HIV-positive son, I returned to the patio of my apartment where I prayed. That day felt different. I looked at the beautiful Virgin de Guadalupe statue. I got down on my knees. I prayed for the first time in weeks. “Blessed Mother, I surrender. I lay my son at your feet and ask you to take care of him. I surrender.”

Where are those damn tissues? : :

Trevion and Norena Gutierrez

Norena Gutierrez is Director of Development and Communications for Red Feather Development Group, a non-profit located in Flagstaff, Arizona. She is the adoptive mother of Trevion and his brother. Trevion...