Googling my mom to find some digital materials I may be able to use in my documentary and to jot my memory of stuff we’ve done.

Focus on Living
….I told my sister? She mentions secrets here…I do feel that our lives have been filled with so many secrets…

Shit Happens and Then You Get Meds
I didn’t know a lot of this…I didn’t really know any of this actually…I’ve just taken things for granted without thinking about anything…

I couldn’t help but think about my sister though at the end when my mom states that she chose a regimen only when she was comfortable with the idea. My sister never had that choice. Maybe that’s why she acted out last year with taking her meds. She never had the chance to way the pros and cons of taking meds, she was just required to do it and not ask questions. This is something I’ll have to think about…

Good Search
With all the searching I DO!!! I’m spreading the word about this…

POZ – Vagina Monologues
Second POZ article my mom’s been in…I’m going to look for the first….
It says here she underwent treatment for breast cancer in 1999 but I don’t remember her telling me about it until I was in middle school.

Ah…so…I have started my senior project and published it on youtube.  I haven’t gotten many hits yet…which is to be expected because I’m new, uninteresting, and not very funny.

I did, however, receive some uhm….”interesting” feedback from this one character “hivquestions” who writes:

“Samantha, hello. i just came across your vlog because their were hiv and AIDS tags for it as i was searching youtube. i didn’t hear you mention it specifically in your vlog that i watched, but i thought i heard you say something about a documentary. you did a great job with the vlog by the way. very natural with the camera and speaking. thats great. anyhow, there is a lot of information about hiv that we have not been told and you will find it here at my channel along with further links. this is going to possibly be overwhelming for you, so remember to breathe. i do the best i can to provide people with the truth in as many languages as i can. you are fortunate to have this information available to you at this time. just 15 years ago when i tested hiv positive i did not have a computer. i had to go to hospital libraries to do my research through medical journals and at that time i did not think to question the hiv test. about 6 years ago i finally got a computer and only 2 years ago did i get high speed internet and finally watch the videos with the information i needed to survive. now i understand that the hiv test is cross-reactive with many conditions including drug use and flu shots and only looks for 2 or 3 proteins for a positive result, 4 proteins are required in australia and canada. i stopped taking hiv drugs over 2 years ago when i found all this out and i have met many others who have done the same. i am very real and you can watch me in vlogs at my personal youtube channel ‘observationmode’ – link in friends section of this channel. let me know if there is anything i can do to help. Gregory – palm springs, california”

He also included a video link about this woman who filed a lawsuit for her false positive or something…which I didn’t watch, because I didn’t really care.  (I’m sorry, but it’s true)

I didn’t really understand at first what this guy was getting at and read through the message rather quickly (since I was reading it on my itouch and was doing about a million other things as I always do).  So, I just assumed that he thought that I was HIV+ and was offering me some guidance or something–which I don’t really want or need, especially not from random strangers on the internet.

So I answered with this message:

“Oh thank you very much, I really appreciate it. However, the documentary I’m working on is actually about what it’s like to be an HIV- daughter of an AIDS survivor. My parents and younger sister were diagnosed about 12 years ago. My father passed away due to AIDS complications, but my mother and sister are very well now. My mother founded the organization SMART (Sisterhood Mobilized for AIDS/HIV Research and Treatment:: http://www.smartuniversity.org) 11 years ago, so for more than half my life I’ve been an AIDS advocate.

I’m sorry if there was any misunderstanding. My documentary is actually my senior project at my university. I haven’t quite organized my youtube page yet or figured out the best way to tell my story without getting people confused. My vlog is meant to document my thoughts and progress on the project and in life, but as I have just started there isn’t much to say just yet. Interviews with my mom and family members will be soon to follow.

Thank you again for reaching out.

Samantha”

It wasn’t until he sent me his next message that I really understood where this guy was coming from:

“My heart goes out to you. I can see that you are a shining star of light and love in this world. There is information here that will help your mother and sister. When they were diagnosed it was with the Western Blot hiv test and that test can cross-react with other conditions, so they may not have a deadly virus after all. I know how painful this is to realize, but it is based on the facts and the evidence. I also tested positive in 1993 and I would never joke about such serious things, especially when my own life was at stake. Again, My Prayers go out to you and your family, prayers for hope and wisdom and compassion. Gregory 760-416-9493 california”

Uhhhhhhhhhmmmmmmmm whaaaaat?  Excuse me crazy, but if my fam wasn’t positive then why the hell have they been taking meds for the past DECADE or so?  And no, I ain’t buying the whole “these drugs aren’t necessary” crap cus for the past two years we’ve been having a drug freak out with my sister.  Yes.  My family is positive and I really don’t appreciate people trying to play games and act like the problem isn’t there.  I was so confused and annoyed I asked my mom what the hell this guy could be trying to tell me and she called him…I think the term she used was “Denialist.”  Apparently out there, there’s a bunch of people who have tested positive and refuse to believe it.  Some even go so far as to believe that HIV doesn’t exist.
WTF.

I’m sorry…cus it does seem like this guy means well…but this fucking pisses me off.

I can’t even put into words right now how I feel about this.

I’ll be making a video in response to this as soon as I get over my flabbergasted shock.

But then again…I don’t want more of them to attack me, so I’m considering making a video response that I don’t post to add to the documentary later….I dunno…I’m so stunned right now.

I need a title for my Channel X.x I think I’ll wait until I’ve had a few more videos up before I stress myself over it though….

As a quick recap, it’s been decided that my senior project will be changed to a documentary on my life and childhood as a child of an AIDS survivor.  (Stray will still be done, but on my own time and as work for the DIY class)

This has made me wonder why this topic is so important to me.  Why do I feel that this needs to be done?  I have ideas, I have feelings, but nothing that I could put into words–until now.

I want to be normal.

I want to be normal with normal parents and normal siblings and normal relationships.

I am so TIRED of my life being dictated by something that I had no control over.  I’m tired of feeling bad for feeling this way because I am not the one “directly affected” by the disease.

And I’m tired of the way dealing with this has made me interact with others.

I’ve always had to be in the background.  The (unsaid) less important one, the lucky one, the one that should not complain.  I’ve always had to be strong and stable.  Sometimes I wished though, that I was “sick” one, that someone would take care of me.

Having to act that way made me take on the role of the strong caretaker in all my relationships–romantic relationships being the worse.  I have not had one “normal” relationship because of this.  Every relationship I’ve been in has been more mother child than boyfriend girlfriend and I’m sick of it.

I understand that there really isn’t any one definition of “normal” but I do know that whatever I am is NOT.  I hope, through this project, that I can understand and come to terms with my childhood and be able to move on.  I know that “being normal” isn’t necessarily a realistic goal…but…it doesn’t hurt to try.

This semester I had to read Maus I & II by Art Spiegelman for my graphic novels class.  For those that don’t know it is a graphic biography of sorts illustrating Spiegelman’s father’s story of how he went through and survived the Holocaust.  Spiegelman’s mother committed suicide so his father was the only one that could tell the story, though he was ill.  During the story we learn Spiegelman’s mother kept diaries during the war but his father, Vladek, destroyed them all after her suicide.  While reading I kept wondering how much more we would have learned if Spiegelman had started interviewing his father earlier–or if he had interviewed his parents before his mother’s suicide or if he had done it prior to his mother’s diaries being destroyed.  How would the story have changed?  What more could we have learned?

Then, once I finished, an idea crossed my mind.  I have the opportunity to tell my parents’ story as well–only I’m more fortunate than Spiegelman because my surviving parent is still in very good health.  My parents did not live through the holocaust and were never war refugees but they were victims if the AIDS epidemic.  Knowing how terrible those times were in the 90’s, could my mother’s story not be considered a survivor’s tale?  In addition to that, it’s a story untold.  We hear lots of holocaust stories, but how many stories do we hear about AIDS survivors?  Heterosexual AIDS survivors?  Heterosexual female AIDS survivors?  Heterosexual female AIDS survivors with HIV+ children?  Heterosexual female AIDS survivors with surviving HIV+ children?  I have not heard many and I doubt that if I–a child of an AIDS survivor–cannot think of many surviving tales–those who have not been affected by the epidemic, could know any better.

So now I want to tape my mother.  I want to hear her story and my father’s story.  I want to know everything that happened.  I want to know it all.  I don’t know if I would make it into a graphic novel or if I would do anything with it–but I feel now, that it’s something I should know–something I should have, something I should be able to share with my children so that they understand how indescribably amazing their grandmother is.  I have to do this.  I won’t forget.