How do you choose your Vox neighbors and friends?
Submitted by gcgal.They have got to be interesting if they have an axe to grind I need to be interested in why.
It is 1994 and I am sitting on the roof top of my apartment HIV+ and coming to grips with the recent news that I was mentally ill. Talk about being disconnected from every one else; I never felt like I related to the world around me and being HIV was another layer of that divide and now this.
I pulled the wand out of a bottle of soap bubbles and blew a
steady steam of breath through the ring.
The bubbles wobbled out into the night air and drifted out into the
dark. I wondered what uncertainty was
ahead in the dark before me. I reasoned
if the bubbles could may their way in the dark then I could also. I was wrong to believe it would be that easy.
Then things changed and every thing came crashing down around me. At some point in your life you can have pain so incredibly
intense that you will do anything for relief.
I reached a point where my relationship of many years ended, I lost my
job, my friends abandoned me and my family was no
where to be found. I wanted the pain to
end. There seemed no way for me but to die.
I sat at the desk in my apartment and numbered out the pills and one by
one swallowing enough pills to do the job. The pain will end. Or so I thought.
I woke several days later in the hospital with a nice elderly
lady sitting next to me reading a book. She
reminded me of my grandmother. I looked
at her and she said, “Welcome back.” She
picked up the phone and made a call. I
noticed that I was tied in the bed, leather restraints were around my ankles
and wrists. A doctor soon came and sat by my bed and told me that she is
surprised that she wasn't looking at me in the morgue.
Failure. I felt as I’d fucked up,
yet again, at something else.
I spent the next three months in a mental health facility learning how to cope with my disorder and how to stop living some where else in time. Yet, just at the point I felt I’d reached my end, without my
realizing it, life was beginning.
It would be a new life where I understood that HIV
and mental illness doesn’t define me and acceptance of this was what would heal me.
I found myself many months later sitting on that same roof
blowing bubbles into the morning light and seeing a future much different than
I had months ago. It wouldn’t be easy,
this future, but it was mine, whatever it was to be.
Yes, I’ve had love affairs though not in the conventional sense. Most would say I’ve always been a little out there on the ledge with a lot of things I’ve done. All I can say is hey I’ve lived my life as full as I’ve known how. My life did a sudden turn in 1996 when I fell down ill, literally fell down. While laying in the hospital unconscious for 6 days some loving hands cared for me. My face was caressed time and again by someone I’d only known by name. There she was when I began to come aware of my surroundings. Dr. Anna Huang a petite smiling woman with long hair pulled back. Her first question was, “Who is the president?” I responded with “Hillary Clinton.” She smiled and that began our affair. Over the next few years Anna saw me naked more often than my boyfriend at the time. Anna would busy me with talk about my activism while manipulating the lymph nodes under my arm and she really listened to what I had to say. She never rushed our dates; I just loved that about her. Once when I was really sick she showed up at my house with some chocolates and sat by my bed and comforted me with her caring. She came over several times and had dinner with me at the time I was getting Meals on Wheels and she never complained about the food. I made appointments at her office just so I could see her and she could see me. One day she showed me some pictures of her children she had from another relationship. They were lovely. I’d always wanted kids but never did take the step to have them. She said she’d be happy to drop them off sometime, but I really think she was trying to humor me.
Our relationship deepened over the next 3 years. Then a sudden event happened that tore us apart. The hospital where I’d gone to see her was, over night, taken from the privately run company that had failed miserably in its keeping. A group of University physicians taken control of the hospital and I would be assigned to a new doctor. I cold shiver ran down my spine as I heard of this on the news. I wondered what would happen with the relationship I’d worked so hard to establish with Anna. Of course being the selfish person I am all I could think of was of me. What would happen if I got sick? Who would call me on the phone to check on me? Who would warm their hands before feeling my body? Even so, how could I get naked in front of someone else? I called the office and asked to speak to Anna but she was already gone. My heart hurt.
I never got to see Anna again. Why didn’t they ask me what I thought about this? Didn’t they want to know how this was going to affect me? Did I matter to them?
One day a guy came around, hanging out at her office, I mean he was nice enough but he made me feel like I was an object. He never once asked me how I was doing with my writing. He just made me want to clam up. Soon we drifted apart and I moved away and started seeing someone else in New York City. He was okay, a little older than me and very kind. Though, it took some time before I looked forward to going to see him. He was a dear man and really seemed to care, though he lacked the spark that made me want to do well and every now and then, while he is manipulating my lymph nodes under my arms, I close my eyes and see Anna in my mind.
I’m Burnt!
The other day I’d finished a Ryan White Part B meeting when I stopped at the back of the room and found a CDC pamphlet for providers to help them deal with “Burnout”. As I was thumbing through the pages it occurred to me that I’ve never seen something like this for those of us who are HIV positive. Sure we have our support groups started by us and driven by us. But what do providers know about our burnout?
On the drive home this thought kept turning over in my mind. Sure providers and caregivers have to deal with burnout and I support them getting all the help they need. Yet, I’ve been positive for 21 years and I’ve seen more doctors, psychiatrist, nurse practitioners, nutritionist, phlebotomist, therapist, surgeons, counselors, neurologist and case managers than one can possibly imagine. I get tired sometimes of having to go to this appointment and that, having that exam done, tests run or the next blood drawl. I am tired of waiting rooms with magazines from two years ago, the chairs so worn and hard that I stand because my butt can’t deal with it anymore. Do these rooms really have to be so gloomy? I really get fed up with doctors not hearing me and telling me what I should be doing instead of listening to me when I say how damn painful it is to give myself one more shot. I’m tired of worrying that the Treatment Modernization act will wipe away any shred of humanity I have as easily as Ryan White was dropped from the title. Sound like I am bitching? Yes, I am. I’m burnt, burnt so badly that at times the only way I feel I can be empowered is refuse to take my medicine or to do the things that are really good for me.
So what do I need? I need a little understanding that there are days I just don’t feel like doing much of anything. I need you to know that when you want me to come in for yet another appointment that I might just been too tired to do it. I need you to know that I realize you have burnout too. I need you to know that as exhausted and burned out you are I am too and I’ve been doing this HIV thing a lot longer than you.
“Yep, I’m Bi”, Says Paolo Preston!!!!!!!
Seems like every where you go you run into us, when the fact is there are just about 5.7 million of us Bi’s out there, according to the CDC. They like to do things like that, count I mean. Just as there is a continuum of sexuality, there is one for Bi’s. I fall somewhere toward one side than the other. Oh yeah, there is more than one type of us too.
Looking back on my childhood there were signs. I was depressed for long stretches, even months, I was withdrawn rarely playing with others. My parents we pretty much detached from what was going on with me and they shrugged it off indicating that I was the “Odd” one of the family. Like that was a bad thing?
I’ve struggled to come to grips with the fact that I am bi. Being bi sets me apart from most people, and those who know this about me struggle to understand it also. Though lately it seems like every where you go you run into us, and blessed you are to do so.
Earlier, when I said that being bi sets me apart, I meant it. Sometimes I think it funny, the look of terror, on peoples face when I tell them I am bi. It gets more fun when I add that I have AIDS also. I’ve really gotten used to the usual comments or questions people ask about HIV and what it is like for me. But, the questions about being bi don’t come. I feel, sometimes, that they are ignoring the sexiest thing about me outside of my husband. When I was dating I noticed that most of the guys I went out with found me exciting and interestingly weird. I was cool with that. I mean how much more entertainment could you want but with a Bi person sitting across for you who could tell you how many cars of a certain color went by the window of the restaurant? I’ll let you process that one while I consider what’s next. No the questions don’t come only a look of fear like they just pissed their pants in front of the Queen.
Let me give you an example, hold on it’s a good one. There was this guy a little older than me, I was 36 and he was 48, and he’d been after me for some time to go out with him. I guess he thought we’d make a good pair, like milk and cornflakes. After about 3 months of evading his requests to go out on a date with him I decided that I’d go for one dinner with him and maybe a little clutch and grab with him later. He suggested we meet at a very nice restaurant downtown not far from Independence Hall. I got there at 6 and he was waiting at the table for me. I sat down and we ordered our drinks. I had wine he had a sweet cocktail BEFORE dinner. Yes I am a bit of a food snob, sue me. I began to ask questions about him, “From where do you come?” and “What brought you from Indiana?” I stopped asking questions just short of interrogation. Here’s where it got interesting.
I knew it was coming and it did sound sincere. “Tell me about you?” So I told him how I got to be living in Philly and about my activist work. He was asking some really good questions and for a while I forgot that I was on a date. He told me he was an avid reader of my column. Very flattering, no? He then began to question me on why I was hospitalized several months back. So here is where it became interesting.
“I was checked in because I tried to kill myself. I found out while I was in there that I have Bi-polar disorder.” I looked at him as the whole of his face changed. He began to mumble instead of speaking with the fullness of his mouth. The rest of dinner was small talk with long silences. As we were enjoying dessert he leaned back and began to say how much he has enjoyed the evening but he wanted me to know that he felt he was too old for me. Get that, HE is too OLD for me. I sat there looking at him pondering wither I should challenge him to tell the truth. The activist in me was poised to strike but I did the “right” thing. I told him that I appreciated him letting me know that. So I paid my part of the bill and left.
Being Bi-polar hasn’t always been easy to deal with. Now I am on some good medications and I am diligent in taking it. Looking back I see where it’s been a good screening tool for filtering out those people in my life that just aren’t going to be there for me. I’m still open about being bi though I still get the “Look”. I don’t mind so much, I’ve mellowed with age and I am old enough that people think I am eccentric and maybe my parents were right I am odd.
