several months ago a local chiropractor offered an information session to the hiv+ communities, and a subsequent free initial consultation session. i attended the presentation and decided to take him up on his offer. as part of the deal, i had to get x-rays and do what is called a posture print, where they put stickers on key points of the body and map one's posture using the image, similar to the technology used in making "avatar" and other films. i was shocked at the results.
i spend so much time looking down, either while walking around or sitting at my computer, or doing whatever else i might do, that my cervical vertebrae in the front are on the verge of fusing together. i have been in traction for this three times a week for over three months now, and my upper body posture has improved immensely. i'm supposed to get another x-ray now to assess my progress, but it is unclear if medicare will cover it and i can't afford to pay the $40-$60 charge to get it done. hopefully i can pay it with my check next month because otherwise we will be at a stand-still on that. at least we can now start addressing my lower back issues with more diligence now, which had to take a back seat to what required more urgent attention at the time.
i'm walking around with my head held high in a way that i haven't in a long time, if ever. it has been very interesting to note the psychological impact of this on myself and others, and how this shifts my perception of myself and the perception others have of me. it is as if i am facing the world more directly than i ever have before. (well, i am.) it also leaves me wondering if people now see me as arrogant or snobbish as i walk around with my head held high. i thought about a friend of mine who has great posture and asked him about it, and he told me that people have in fact accused him of that very quality - arrogance - based solely on his posture. (trust me, he is the furthest thing from arrogant that you can imagine.) what other assumptions or judgements do we make about others based solely on their posture?
i look forward to what other changes this might bring, and to incorporating them into my new "identity". the thing is, I have had medical problems over the last year during which it would have been helpful to have family support. it would have been nice while i dealt with some of my ongoing back problems. it would have been nice when i was knocked down with a severe case of bronchitis and was laid up in bed for a week. it would have been nice during the depths of my depression. but i don't, and the depression had me isolating from the friends-family who might have provided that support.
i have been having a lot of trouble sleeping lately.
the only nightmares i have ever had were dreams about being home again with my father and step-mother, and being abused at their hands. sometimes the abuse is emotional, sometimes physical, sometimes both. the dreams never involve events that actually happened, but are very realistic are exactly the kinds of events that did occur. i wake up re-traumatized, and it usually takes me several hours or even a day or two to get my head right again and let it go. these nightmares typically occur only once every year or so.
i had one this week. then last night, i had another dream that almost went there but wasn't quite as intense as those nightmares. beyond that, i have had a hard time getting to sleep, staying asleep, and sleeping more than 4-6 hours.
i have had so many medical appointments this week that i haven't been able to take any naps. i don't know what's going on, but i'm not happy about it. it is more difficult to feel well, mentally and physically, without proper sleep, and i know that it is THE most important restorative activity for our health. i'm going to try to find time for more naps - although the catch 22 in that is that when i nap i fear that messes up my sleep at night even more. still, better to get sufficient rest one way or another as opposed to not at all.
it probably wouldn't be so bad if i were smoking marijuana these days. i have no money to spend on that and have decided for other reasons as well that i would prefer not to smoke - at least not every day. as a result, i'm trying to persevere through this, and to manage it in other ways.
it makes me wonder if i'm spending these nighttime hours working through this relatively recent cutting off of contact with my father, step-mother and some siblings. it makes me wonder if there is some other work i could do on processing that, psychologically speaking, that during my waking hours. it makes me wonder if it was the right decision at all, and what the acceptable alternatives might be if i decided to go back on that decision.
the third reminder - or reminders - revolves around my health challenges. i had been thinking about moving to brazil before i went on disability. on disability, i could no longer afford to pay rent and eat in the u.s. without additional material support. i had my brazilian boyfriend who wanted me to come there, and i needed to live somewhere i could afford to live. so shortly after going on disability i began plans to make the move and spent the next year or two doing so, and the next several years coming back and forth every three to four months to see my doctors and pursue whatever medical treatments were indicated at the time.
sure, i had plenty of specific health challenges during the time that i spent much of the year in rio, and had to spend five months in the u.s. at one point doing physical therapy as well as a series of diagnostic tests for an unrelated problem. on that trip i had to re-pack my bags and move 17 times, going from one friend's couch to another's spare bedroom to yet another. (see how fun being homeless can be?)
in short, i think that all of that back-and-forth provided a big, long distraction from the issues that were surfacing for me as a result of being on disability. my ex, tunikko, is one of the most generous people you would ever meet - typical brazilian, really - and provided all of the resources for me that i could not provide for myself. it was a reversal of fortune of sorts between us, because while i was in the u.s. and for my first couple of years there, even on disability i had more financial resources than he did and carried the bulk of our expenses. for the last several years though, it was his turn. i didn't like it and in fact felt financially trapped in the relationship; nevertheless, there is no denying that the support was there.
i was able to come back to the u.s. because after around twelve years of waiting, my name had risen to the top of the list for a specialized rental subsidy for people with hiv/aids. these subsidies come with all sorts of restrictions and limitations, including requiring me to live alone and forcing me to live in a marginal or dangerous or otherwise undesirable neighborhood. moving back into this situation brought the question front and center: if i seriously NEEDED anyone for assistance, who would be there for me? not only are we less likely in the u.s. to turn to or lean on family and friends when we need support at that level, my relatives are particularly cold and uncaring. (there is really no other way to say it.) although i have the most wonderful friends in the world, who would do for me whatever they could in whatever situation, i kept focusing on what i didn't have.
we are led to believe that family is the most important social unit there is. even in families like mine we get plenty of those messages, and even in families like mine there is usually someone who will step up to the plate in a pinch and act like real family. for me, being "alone in the world" and sick reminded me that i didn't have what many take for granted: a biological family who loves me and would help me if i got sick(er) and really needed them.
My parents and I have never been close but over the years before I left for Brazil they had made significant efforts to maintain a civil relationship. Nevertheless, while I was in Brazil it started seeming to me like we were more distant than ever, not always responding to emails and not initiating as many as usual. I chalked it up to the fact that they never knew where in the world I was, and knew that I was mostly on another continent.
Five or so years ago a half-brother with whom I have never had any conflicts whatsoever suddenly cut me out of his life, and in doing so accused me of going around the world and spreading HIV. I wasn’t sure what he meant by that, but his message was so full of convolutions and extraneous accusations, some petty and some not, that I considered it one of a set and didn’t think too much of it. Being the scapegoat of the group, I have long been used to having hateful statements directed at me from out of the blue.
Then another brother took the opportunity of the last national election to turn into a right-wing nut case – literally. Until then there were none of those in the immediate family, although the extended family does have its share. I was having a minor political spat with one of those right-wing extended family members leading up to the vote, which she shared with select others who she thought might be on her side in hopes that they would shout me down. Instead, that brother jumped in out of nowhere with comments about how I was only concerned with sponging off of society and going around the world spreading HIV. I noted the similarity between the two comments from my siblings, although on some level the meaning of it didn’t fully register.
The following Mother’s Day, in response to my well-wishes my step-mother decides to ask me about my sexual behavior, saying that I told her at some point that I don’t always practice safer sex and that she has been deeply disturbed about my supposed revelation ever since. She wasn’t quite making the same comment my brothers did, but she was venturing an enquiry as if she believed something along those lines. Of course, it is highly unlikely that I ever spoke to her about my sexual behavior, and it is beyond unlikely that had I done so she would not have discussed it with someone else. The pieces of the puzzle were starting to come together.
I’m still not sure where these comments germinated. I have a few ideas but will probably never know, as they cannot be counted on to tell the truth.
My step-sister got married the following July. I found out in passing from a third or fourth or fifth party, the way I typically receive so-called family news, a couple of weeks before the wedding. I have never had a conflict with this step-sister, either – or at least not as an adult. I waited for an invitation that did not come, and the date passed. I knew in a vague way why I wasn’t invited: it had to relate somehow to my historical status as family scapegoat. A few months later I decided I wanted to hear the answer directly from my step-sister and asked her directly. I also asked her to be honest and not tell me some bullshit about how she thought I was out of the country, or whatever, which she might have otherwise done. Her reply? After some crap about how she and her fiancé needed to watch expenses, she revealed that it was because I “cause drama at family events”. (Keep in mind that drama for them is if you expressing a feeling or disagree with their thinking, about anything in any way.) The point is, though, that my step-sister would not have made the decision not to invite me without consulting with my father and step-mother, and she probably did precisely as they suggested.
I realized that in almost 50 years, not a thing had changed. My “family” was still trashing me behind my back, demonizing me the same as they have always done, holding me responsible for everything they don’t like about themselves, one another and the world, and working diligently to enlist the rest of the group in their perspective. After spending years being deluded into thinking that we were now playing nice, I realized that even the superficially pleasant relationship I thought we had was a lie.
Those developments were quite a big reminder of the biological family I didn’t – and don’t – have. As one might imagine, I have lost my motivation to even do the superficial dance with them. I’m not interested in fake relationships, so if they don’t want a real one, they don’t get one at all.
