In this era of all this chaos and uncertainty, people all over the place are desperate for identity, direction, purpose, and meaning. They are so desperate for it, they will cling to anything, no matter how trivial, justify any action to achieve the purpose, and apologize for it later. All that is good that does get achieved in the midst of the chaos gets overlooked or underappreciated.
Wow, either that is the most profound thing I have ever come up with, or I just gave fortune cookies a run for their money! Either way, seems like a good beginning of my next chapter.
About a year ago, I decided to come forward with my story about what it has been like for me living with HIV. I did this with a lot of things in my mind on why I did, why it is and was important, and if anyone out there really gives a damn. Turns out, there are people who do care. Many of you have read my story, have given me your love and wonderful words of encouragement and support, and most importantly, respect. There has not been one negative reponse, at least not that I know of! That being said, let's see if there is some more I can come up with.
There are many topics that can be brought to the table for discussion, the one foremost on my mind and the main theme for this paper is groups and labels. We, as a people, don't like to label anyone or feel like we are classified as a "group". Yet, it happens more and more all the time. We might not like to admit it, but this is certainly true in the poz community. I don't say that to upset anyone, however, with my observances and experiences, I can say that it is going on.
It isn't easy to say that out loud, I am an outsider that got thrown into this community without all the "normal" tags that most have coming into it. This isn't a new feeling or experience for me. I have always felt like I was a square peg in a round hole, didn't fit the norms, out of step,
In other words, an outsider. When you come into a new place or community as an outsider, it is very difficult to penetrate the circles already formed and to be accepted. It wasn't until I was thrust into the poz community that the reality of that really hit the mark.
I have been in counseling for over a year now. At first, I was very skeptical and let's face it, defensive. No one wants to think they can't handle the stuff in their lives on their own. I have been taking care of myself in that fashion since I was 14. I moved out at 16, had my first child at 18, the next one at 22, and from then on have been a mother. There was a lot of trauma mixed in that small timeline, not including the events on their own merit that created their own trauma. What I have learned over this time of "self-reflection" is this, what happened then crafted the trauma that followed in my adult life. It's like a knitted sweater, when the sweater is complete, it is a mosaic of you and your life. Then one thread starts to unravel, and if you don't repair that one thread, you are left with a pile of yarn. It is all one continuous thread of trauma that wasn't addressed. Here I stand, scratching my head, going "How the hell did this all happen to me?!" Not a fun journey by any means, but I guess the lesson is I now see where it all came from and in doing that, I can at least forgive myself. I can own up to my end of the messed up stuff and say, "Hey, I am sorry this went down, but I get it now." It has also helped me to look at it from another perspective, which helps me to be able to write about such awful things in my life and be ok with that around a bunch of strangers. It also makes me feel better to know that I have really made the effort to break the cycles that are ingrained in us as children. I also have learned that no matter what I try to do to "fit in," I never will. I will always be the outsider looking in, but that isn't such a bad thing. It's ok to be different and still be able to belong somewhere. That brings me to labels and groups.
In the poz community, since I have been more public and have been doing a lot of research and public speaking, I see the same kind of problems I have been struggling with outside the poz world. The two terms that have come up to me lately that I am very mixed on is, long term survivors and the whole discussion of HIV and aging.
Let's start with the first one, long term survivor. It seems that this phrase has cropped up in the last 3 years or so, I may be off on my numbers, so fact-checkers, sharpen your pencils and be ready to correct me. In order for you to say that you are this, you have had to have lived with HIV for over 10 years. Well, guess I qualify to join the club, yea! Do I get a card like when you get to sign up with AARP? Can I get a discount on things if I show this card like, hmmm I don't know, let's say 20% off my next kidney dialysis when I start having to deal with that. Oh, I know, how about a discount on the seeing eye dog that I am going to need when I go blind from macular degeneration. Is there any upswing at all for being able to qualify for this group? Now, here are the people coming out of the woodwork who love to say, but because of the wonderful advances and meds out there, we can say this and be proud! Great, I am proud right along with you, but being a survivor is enough, we don't have to throw long term in front of it. All that does is try to make something already ok sound even grander and better. It isn't enough just to say, "Hey, I am still here and I am surviving." It has to be "long term," well, what if for you it isn't so long term, what if it is kinda short term? For people like me, those are buzzwords. There have been lots of buzz words that have cropped up since the outbreak of HIV in the late 70s. These are the words that make me see red and my rage boils over. George Carlin was one of my absolute favorite comics. He wasn't just a comic, he was speaking clearly about society and the way we mill about in it. He was the one who turned me on to what he called "soft language." If you want an advanced education on what that is, I recommend you hunt up his books or his old stand ups on Youtube and his HBO specials. It is quite a revelation!
These are the buzzwords and phrases that grind my gears:
- Chronic condition
- Manageable condition
- Long term survivor
- HIV positive not AIDS, even when you have AIDS
- Near-normal life
- Slow progression
- You don't look sick
- You're just tired
- You're just bored, find something positive to do
- Positive reinforcement
I am sure if I really thought about it, I could come up with a whole lot more, but you get the overall picture. I hear these words and phrases, and I can feel myself automatically tense up and my eyes flash. That is usually a sign to run fast, once the eye flash, no one is safe!
As I have said before, this disease treats each person differently, so that also means that
People have different views and experiences with it. If this person has this issue, it doesn't mean that the next one has the same thing. I say this so I am not offending anyone in my strong language I sometimes use or my anger or my views. It is difficult sometimes to talk to others in person, much less in a real informal way such as on paper. Doesn't help matters either when you feel like an outsider and you are seen as being critical of the very people you are trying to fit in with. That being said, I also feel honesty is a huge part of putting yourself out there in public view. If I have to be worried about what others are going to think and say about me or what I say or how I say it, I should have never even come forward in the first place. You can be mindful of others, but it is ultimately a disservice if you don't say your peace honestly.
I have found it is really difficult to find a place where you can fit in the poz community for many reasons. I have found, especially in my area where I live, that the small poz community we even have is predominately gay men. Before I got HIV, I never even thought of myself other than a straight woman. Over the course of my sexual experiences, I had a few with women, group situations and the like, but if pressed, I wouldn't really say I was a lesbian. I find myself in my groups and interactions with my poz community that I end up saying I am bisexual, because I seem to have more acceptance in saying that, than if I would just say I am straight. But in doing that, I feel like I am painting myself into a corner, or I have to identify this way so I fit it. In even saying that phrase, the irony is just filling my space. All along, the gay community has been struggling for decades for acceptance in the "normal space". They have had to live several different lives at the same time to be able to find where their space is. They have had to live a lie, in hiding, and all that baggage that comes with that. In lots of circles, they still aren't accepted the way they should be. So, they fought back and formed their own communities and groups and found their own acceptance. After those groups were formed, they were broken down even further, to now we have some alphabet soup title to make sure we haven't forgotten anyone. Trying to find one's own identity is the hardest thing in the world to do, so I applaud the fact that all are represented now. One little problem though, us "straights" are left over here, away from the others, maybe not with malice or even the thought. The focus of the evolution of this disease has always been on the gay community, because that is where it started. It didn't just stay there though. Us "straights" are affected too, and we have even less to draw upon, be it resources, companions, or a host of other things. Then, right after I just wrote that, the next day on my newsfeed comes up from AIDS United that today is Heterosexual HIV Awareness Day. I was floored! It was a mixed bag though. I was happy to see we have a day now, then at the same time, I was sad that we have a day. THEN, I got pissed at myself for having both emotions at the same time! It was like, "Christ, would you just pick an emotion already and run with it, what's with this rollercoaster deal, up and down, one day this, one day that." That's when I stopped myself and said, "But isn't what this disease is in the first place? A fricking rollercoaster ... All you can do is just hang on and go with it, some are terrified, some are thrilled,
And some even both at the same time." Then I started laughing to myself, the vision that came to me was from the movie Parenthood with Steve Martin. Before I continue, if you haven't seen it, I firmly recommend it, wonderful movie! Back to where I was ... it was the part with grandma near the end when they are trying to go to the little one's school play, and she is talking about her marriage to grandpa and compared it to a rollercoaster, which is a great metaphor for life in general. That of course is the deeper lesson. We all love those deeper lessons, don't we?
How do we stay on this ride, this rollercoaster of this disease? You hope there isn't a real long line and if they make you get off the ride, you can get back on for another round. I guess in this whole thing, the grand scheme if you will, you have to do whatever it is that you do with the mindset of forward motion. If you are constantly looking behind you, and living back there, you are going to be stuck in this limbo deal that will not allow you to go forward. I am all about the forward thing now, I am sick to death of looking behind me, and I am completely over this limbo deal. I have learned all my lessons and I am now ready to apply them for future use.
So, I have this to end with, in respect to groups and labels, the labels are behind us, or should be, and the groups can be the forward motion. Groups are a great thing, they stop the isolation that we go through, it gives us support, understanding and acceptance and love. I see that we are still having trouble with identity, being able to include all that fit the mold. It is a very difficult thing to give general cover with a group of so many differences. Identity is a self, internal thing and very personal and different for all. The reason for that is we are all different, we are not rolled off a conveyor belt at some factory. The more we listen, and realize that even with all of our differences, we aren't all that different, the basics of all is there, the blueprint if you will.
Acceptance is key to identity. The more acceptance we have as a collective, the more identity comes along with that. When that happens, we won't have to pigeon-hole and have groups within groups, it will just be understood. What a day that will be! One more reason to keep going I say, that little frisson of hope that won't go away, the little spark in all of us that is waiting patiently.
Pssst ... still waiting over here ...
Kimberly Glanz lives in Ohio with her children.
[Note from TheBody: This article was originally published by HIVE on Oct. 23, 2018. We have cross-posted it with their permission.]