Where do we go from here? Part 2

Once I found out I was negative for the time being I focused on how to help D get through this. I went to the bookstore, and for the first time in my life was let down by books, or at least bookstores. I have always been able to find help or comfort in books, but I couldn't even find a single book for newly diagnosed HIV patients. After four bookstores I finally found the Guide to Living with HIV written by the Johns Hopkins HIV Clinic. I read it cover to cover. I also bought D a nice pocket sized notebook and a portable filing folder. I knew that one of the keys to successfully managing HIV is to be very in charge of your own medical care. I know D really well and I know that he is very disorganized with paperwork and that whenever he talks to doctors it all comes out as mumbo jumbo, both what he says and hears. I bought the folder so that he could keep all his paperwork organized and accessible from doctor to doctor and I got the notebook, with color coded pages, so that he could take notes, write down questions so that he could remember to ask them, keep appointments,make notes about tests, etc. 

I gave him this first set of gifts and told him that no matter what, even though he had chosen to return to his ex I was still his friend and that that friendship meant a lot to me. I wanted him to know that I intended on being there for him and wasn't going to stop being his friend for any reason, that HIV didn't matter to me.  

Days came and went, some days we talked, others we didn't. I learned more about HIV until I felt I knew at least the basics forward and backwards. I visited thebody.com for hours at a time, reading everything I could. I got a whole bunch manuals from a friend of mine who works as an HIV patient counselor and educator for native youth. D started reading the book I gave him even though he rarely reads books and started opening up about his feelings. One day he called to say he had a card I had left at his house and was going to bring it by. Really he just needed to talk, but didn't know how to say "I am so angry I don't know what to do and I am afraid to be alone right now." He didn't know how to say it, but he knew that once he got here we could talk through it.

 Everyday we talked about HIV. It was everywhere. There were endless questions and not enough answers. It was impossible to get away from. We would decide to go get lunch and sushi sounded great and D would say, I'm not supposed to eat raw meat or fish. I love sushi. Do you think it matters? At first HIV found it's way into everything. But gradually as we answered our questions the periods between life/ life with HIV got longer and longer. Soon we could make it all the way through a movie without a question or comment about HIV.  I still remember the first whole day together that we didn't talk about HIV. It was still there in the back of my mind, and I know it was for D to, but we just never talked about it. We didn't avoid it, but at that time, it just didn't need to be a part of anything. The next day it was back in our discussions, and now it comes and goes, like any other part of life. 

HIV stirs up so many emotions it's hard to believe you could feel so many things all at once. There is anger, confusion, hurt, hopefulness, disgust, sadness, regret, nostalgia. It seems to come in waves or all at once, or sometimes in little bits like tiny daggers are being thrown at you in a ceaseless barrage. Most of the time it is hard to even define what you are feeling much less how to process and handle the emotion. It is just important to talk about it with some one who can listen and understand. D and i have both had conversations now where one of us says to the other "I am just feeling so...." followed by a loud noise or a bit of stomping and flailing. Even when I don't know how to express what I am feeling I just try and express that I am feeling something difficult instead of trying to bottle it up. Usually when this happens the other one of us says, yep, I know what you mean. I cried every day over silly thing and not so silly things for a long time. I felt ridiculous for so many tears, I never really cried and then all of the sudden I couldn't stop.  I remember how big of an event it seemed the first day I didn't feel so overwhelmed that I cried. 

I asked D if I could go to his first doctor's appointment with him and he said that would be fine. I had questions for the doctors, I wanted to meet them, and I wanted to make sure that D felt comfortable being assertive about his care. D had already had some blood work done and was going to get his results at that first appointment and I wanted to be there for those results. I needed to know how sick he was, and what they plan for treatment was. I guess I just wanted some convincing that my friend would be taken care of by nice people I trusted.

The doctor's were really nice, open and easy to talk to. They helped to put to rest all of my fears about proper treatment. D's caseworker even showed up and told us they try to always make it to the appointments to help ensure that everything new is understood and nothing is forgotten. They went over how HIV works, what it means and how it affects people. Then the gave us the first set of test results. D's CD4 count was about 560, still within the normal healthy range and his viral load was around 40,000 which sounds high, but really isn't bad for being untreated and compared to what a high viral load can be. There was no need to start any medications yet, and hopefully for a while. D sis have to get a bunch of vaccinations though. We left the first appointment feeling hopeful, a bit relieved and better informed than we had been up until that point. It is always so much easy to make a move when you know what is going on.

After D told his mom he was HIV+ I started emailing her to let her know that I was here for her son, that I would make sure she was informed about how things were going and that I just wanted her to know that even though she lived far away her son still had people that cared for him and were taking good care of him.  We started emailing regularly, and have gotten pretty close. In fact, she is the one who first encouraged me to begin a blog about dealing with HIV. She is a pretty neat lady and I am grateful to have her in my support network. She is doing a great at being a supportive parent. 

After D's first doctor's appointment he had a falling out with his girlfriend. She wasn't as understanding about somethings as he needed her to be and he finally decided that he understood why they hadn't worked out in the first place, and that it wouldn't work any better now than it had before. She had also tested negative, and they decided to continue with their lives separately again. I felt really sad for D. I had wanted it to work out for him if it was what he wanted, and I didn't want him to feel alone or rejected because of things that were said or areas where understanding wasn't offered. I just let him know that I would stand by him no matter what, that I was still his friend, and he would never have to face this alone. 

Once again we found ourselves back in a transitional phase. Things seemed to be constantly changing and evolving faster than we were able to process them. We had gone from friends to lovers, back to friends, to an uncertain place, not knowing where to go from here. We had gone from both being happy and healthy to having to face and new and scary disease and having any kind of emotional stability seem like a blessing. 

Our ability to adapt and change, accept and understand, seems to be under constant trial now, but all in all I think we are doing pretty well. Whenever I think right now "where do we go from here?" I can't come up with any clear answers. The best I can come up with is that we keep trying to move forward and keep learning. Keep being there for each other and working through our feelings. I think if we do that we will end up exactly where we need to be. I think for now we've got it right, or at least right enough.