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June 2008 Archives



"Certainty? In this world nothing is certain but death and taxes." Benjamin Franklin was the author of some very famous quotes. That's one of my favorites.

As rational human beings, we all know that both death and taxes are inescapable. Yet we try to delay and avoid them as best as we can. This past week, two very close friends lost their fathers. Both were sick for a very long time and both of my friends knew that their deaths were inevitable. But death, as certain and expected as it is, is never easy to face. Whether it is our own mortality or the death of a loved one, we want to hold on as long as possible. Even though it is painful to see our loved ones so ill and watch them suffer, we want to keep them with us. When they die, we are sometimes relieved for them, but our hearts ache with pain. Whether we believe that there is a better place such as heaven does not matter. Our hearts still feel a void and a piece of us is gone. There is an indescribable emptiness and sadness that can overtake us. Our hearts are broken and we grieve. Love is a powerful emotion that can take us to the greatest heights of happiness and the deepest depths of despair.

Growing up and being raised in a Italian/Roman Catholic family, death has always been an integral part of my upbringing. My grandmother, who lived with us, would inform us on each holiday that it would be her last. The woman lived to be 100. I was brought to wakes as a child, where I would play with my cousins and meet my entire loud and overwhelmingly loving family of 5,000. It is also where I saw my first dead corpse and about 600 others. The obituary column was the first page my mother would look at each day in the local paper. She joked that if she didn't see her name there, she knew it was going to be a good day. My mom would make me kneel at the coffin, make the sign of the cross and say prayers. I hardly prayed. I was too busy looking for movement and studying the frozen, lifeless expression of the deceased, wondering just exactly "where" he or she was now.

I still wonder about that. My formal religious teaching has assured me that heaven and hell exist and we either go "up" or "down". But, as I get older, become more introspective and read about different religions, cultures and philosophies, I admit that I still have questions and doubts. The fact is we don't know for certain if an afterlife exists. I hope that it does, but I admit that I am still not sure. I do have a sense that "something" other than our human form exists. Some describe it as "energy". Maybe we ARE just electrical charges, mixed with blood, flesh and bones - controlled by a piece of gray matter that transmits signals to our organs, limbs and limbic system? I choose to think we also have something called a "spirit". We have human form, but our spirit transcends us from mere flesh and bones. I'm not a big fan of of "organized religion". It is what has caused most wars, turmoil, dissension, ideology and political messes throughout history. ("Lord forgive me, for I know not what I do" - or say.) But, I've given this issue a lot of thought and I am starting to tilt towards the belief that there is some form of existence other than our earthly one. I find Buddhism pretty fascinating, but I can't fathom the idea that I'd come back as a chicken, cow or cockroach. Plus, I like veal scallopini far too much to give up meat.

But, as I am a spiritual and curious human being, I try to read as much as I can on the topic. I was reading my "Daily OM", which I receive via e-mail and one of the posts that really struck me was titled "Life Transitions, The Death and Rebirth of Self" It said, 'Sometimes a part of us must die before another part can come to life. Even though this is a natural and necessary part of our growth, it is often painful or, if we don't realize what is happening, confusing and disorienting. In fact, confusion and disorientation are often the messengers that tell us that a shift is taking place within us. These shifts happen throughout the lives of all humans, as we move from infancy to childhood to adolescence and beyond. With each transition from one phase to another, we find ourselves saying goodbye to an old friend, a loved one or the identity that we formed in order to move through that particular time" It goes on to explain that "the bonds we try to hold onto, whether they be with people, jobs or other chapters in our lives form our identity and when those relationships change or are over, we feel unsettled and feel a strange mixture of exhilaration, relief and sadness as we say goodbye to a part of ourselves that is dying, in order to make way for a whole new identity to emerge in its place. We must surrender to this process, letting go of our past self with great love and gratitude and welcome the new with an open mind and heart, ready for the next phase of our lives."

Wow. I guess, in some unconscious level, I already knew that. There has been so much loss, pain and change in my life I should be curled up in a fetal position sucking my thumb. Although I have cried many tears, I'm pretty sure that I came out a better person. And, I'm still here - learning, evolving and trying my best to learn life's lessons, be happy and "keep the faith".

Sometimes, the hardest part of living and loving is to say "goodbye". But, it's never really goodbye, its just "Farewell for now, until we meet again."

Be sure that I'll get to the "taxes" issue on my next blog. But for now. I'll leave you with my best wishes for peace, acceptance and gratitude in your own lives.

So, until we meet again, try to "keep the faith".


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In my first blog, I gave you a little of my background, which I thought was important to understand why I feel the need to get involved in the policy of AIDS.

Now, it's time to take off my gloves and get to some real issues that get my blood boiling. And that is the IDEOLOGY that continues to fuel the spread of HIV/AIDS.

First of all, I can see by a "particular" response to my first blog that there may be some people out there that still think that our government has no responsibility in providing affordable health care to its citizens, or care about anything or anyone but ourselves. According to this rant, I can see that "somebody" needs to take his Seroquil regularly .... Please dear, don't skip your doses!

But, being that I am a big fan of the First Amendment (you know, that little thing called the "Bill of Rights"in our "Constitution" that this administration has tried to circumvent?), even ranting lunatics are entitled to their opinion. Rant on, my friend, rant on. Just don't scream "FIRE!" in a crowed room, or you'll be in serious trouble. And, take your meds like a good boy.

I just saw an article in AIDS Treatment News and Kaiser daily HIV/AIDS Reports about the current fight for reauthorization for PEPFAR (The President's Emergency Plan for AIDS Relief). A group of "conservative" ideologs in Congress, spearheaded by Senator Coburn (R-Oklahoma) are trying to block the legislation because they believe that the bill will spend money on "family planning" - a nasty word for right wingers - and one they insist is a "code word" for abortion. You know, like how the "fist pump" is a really a terrorist code.... Coburn and company do not think that teaching women to use condoms or empowering them is worth spending "taxpayer's money". No, Mr. Coburn and six other Senators are blocking the passage of this very important legislation. They want the bill reworded to specifically restrict that the money be used for "care and treatment" of people infected with AIDS. So, let's try to understand the logic... We'll help them AFTER they are infected with HIV, but won't dare try to stop (or spend money) to teach them about "safer" sex. Condoms are BAD, but medication (without breaking US patents, of course) once someone is infected is GOOD. This kind of logic makes me want to SPIT NAILS!

To set the record straight - there is NO mention of abortion in this bill, or intention to promote it. What the bill does do is use a portion of the money to provide condoms and teach women to empower themselves. This, of course, would eliminate the need to spend money on treatment and very expensive medication for the rest of their infected lives. I will repeat this in case it didn't sink in ... rather than trusting proven medical science and evidence that condoms slows the spread of HIV/AIDS, six "fearless" Senators are inflicting their IDEOLOGY and BLOCKING one of (and perhaps the only) good piece of legislation that came out of this administration!

Haven't we had enough IDEOLOGY in the past eight years? Hasn't it gotten us and the world into enough trouble? Hasn't it tarnished our reputation in the world enough?

I remember when I testified at the HHS (Health and Human Services) committee in Trenton, NJ during the hearings for syringe exchange. New Jersey was the only State that did not have some form of syringe exchange. Year after year, it was knocked down in committee, where it died, along with many people who were subsequently infected via dirty needles or was the partner of someone who did. I was asked to testify because of my personal experience. I was infected by my fiance, who unbeknownst to me, was an IV drug user. (surprise!) I normally don't like to play the "innocent victim" role, because in my opinion, breaking down people living with AIDS into categories of "innocent" vs. "guilty" only adds to the already horrible stigma and fuels ignorance and intolerance. As AMFAR so poignantly expresses in their ad "WE ALL HAVE AIDS".

I sat through that hearing having to endure the testimony of a "prosecutor" who was pissed off that he would not be able to lock anyone up if they were caught with paraphernalia (syringes), an African-American state senator who represented an area of New Jersey (Newark) whose infection rate rivals that of some parts of Sub-Saharan Africa. He compared syringe exchange to the Tuskegee experiment and Hitler's gassing of the Jews in the holocaust! He said that it was a typical racist plot to kill the black community. He was ranting and screaming like the fool that he is - and the racist that HE was, as I saw it. I told him that HE, in fact was the racist because HE didn't think that his constituents were capable of learning how to exchange a dirty syringe for a clean one, how HIV was transmitted and how to protect themselves and others. But the most sickening testimony to me was of the "Christian Coalition". They got up there, faces glowing with the self-righteous glory of God and said, "We'll take care of the sick and dying because that's what Jesus teaches us to do. But we won't give them syringes because Jesus would not want us to do that!' By this time, I was about to blow a freekin' gasket! It was my turn to testify. I had spent the previous night painfully writing a twelve-page testimony, which would be on public record and considered by the committee chairs who had rejected this bill for umpteen years. I had been very nervous and hadn't slept much the night before. But this was the straw that broke the camel's back. After hearing this disgusting testimony, I lost all fear. It was replaced by rage. The first thing I did was rip up my written testimony in front of the room and threw it on the floor. (a spontaneous dramatic effect) I explained that I had been nervous going public with my testimony, but after sitting though hours of ideological nonsense, I could not stand another minute. I would not listen to any more illogical reasoning and I was mad as hell! But, before I gave my testimony from the heart, I looked each and every one of the of them - the Senator, the prosecutor and the Christian Coalition - directly in their eyes and as I spoke, I pointed at each one separately, quoting the bible passage where those self-righteous men were stoning a woman for committing adultery and Jesus stopped them by writing their own sins in the sand. One by one, I pointed my finger at them and said, "Adulterer", "Blasphemer", "Thief", "Liar", "Murderer". "Let those without sin cast the first stone!" (Thank you, sister Margaret Mary Joseph for making me read that passage until I cried. But, I'm still a little perturbed that you beat the living hell out of me with that bloody ruler!) I tearfully gave my testimony and pleaded with the committee not to judge drug addicts for their behavior and think ideologically, but to use reason and and listen to the facts instead. I asked them to think about the lives that could be saved instead. I begged them to listen to the experts and look at the facts. Others testified on behalf of syringe exchange and reason prevailed. For the first time in many years, the bill made it out of committee. The bill was eventually passed into law, but the fight still continues.

My point is that PEPFAR must be passed into law and fully funded without strings attached. Six Senators cannot and MUST not stop this important piece of legislation due to IDEOLOGY! If it is stopped, the United States will lose the chance to make a real difference in stopping the spread of AIDS around the world. This will probably be the first piece of good legislation and the only good thing that came out of this ideological administration. We have this chance to regain some of our reputation as leaders in stopping the spread of AIDS.

We can all be a part of history by getting involved. Make your voices heard by calling Senator Coburn's office AND by calling your own Senators. Tell them to fully fund PEPFAR without strings attached and STOP THE INSANITY of IDEOLOGY!

We are all connected, and as Americans, we can help those in Africa and third world countries who are not as fortunate as we are. It's so easy to make a difference or at least try. Just call the congressional switchboard at 1-800-828-0498 and ask to be be connected to Senator Coburn's office. You can also call and connect with your own Senator and House Representatives and make your voices heard. You can also call Senator Coburn's office directly at 202-224-5754. Tell him to stop blocking this bill and stop the ideological nonsense. Six Senators cannot be the reason that this bill is killed. The bill numbers are S2731 in the Senate and HR 5501 in the House.

We need to wake up and smell the ideology! United we stand. Divided we fall. And, GOD BLESS AMERICA!

Hello my fellow comrades. We don't know each other yet, but I hope some of my blog and my thoughts on living with AIDS will connect with some part of you. I'm new to the blogging world, as I'm "technologically challenged". If you're over the age of 45 as I am, you remember that there was a time, not so long ago, without internet, cell phones, cable TV or remote control.

So, here I am about to share some of my life and bare my soul with complete strangers. I'm both terrified and thrilled. But, when I was asked to do this, I figured, "what the hell?" Living with AIDS has taught me that nothing can be achieved without taking a risk. Sometimes, you fall flat on your face. That doesn't bother me too much. I've fallen flat on my face so many times I can't even count them. Sometimes, I had to crawl and sometimes, I just wanted to just lie there and wallow in my own misery. But those times didn't last long. There is a certain freedom of living in the moment now and taking risks. When you've already faced death and survived, the rest of the terrifying stuff seems small and trivial.

I'll give you a little background about me, so you know where I'm coming from. I'm what they call a "long term survivor". I was infected with HIV at the magnificent age of 23. I'm 46 now, which means that exactly half of my life - and my entire adult life has been spent fighting the good fight. I would not have chosen this for myself for sure, but since I've been handed this deck of cards, I'm playing it as best as I can. You can't go back, so I'm stuck with me. I've grown to know myself and realize that one must change, adapt to new situations and evolve in order to survive. I guess Darwin was right. I've evolved and so has my virus.

Back in '85, AZT was not even available. I was told that I had five years to live by my doctor, the "best" ID doc in my town. I actually believed him and was at his mercy for the next 12 years thinking that he would "save" me. I finally realized that no one can save me. I must save myself or at least try my damnedest. I will not "go silently into the night". It takes a bit of luck, a good doc you can trust and who doesn't have an ego bigger than Zeus. Of course, a few cloves of garlic hung from your neck to keep the vampires away and six "Hail Mary's" and seven "Our Father's" can't hurt. (Catholic girl here)

Hopefully by now you may have figured out that I either have a wicked sense of humor or am completely insane. You are correct. It helps to be a bit mad and a good sense of humor, an appreciation of irony, trust in destiny and my good friends "hope" and "faith" gets me through the day. That, and a nice, smooth glass of Chianti.

I'll do my best to be honest and hope that I can connect with your spirit, your sense of humor and your common sense ... or lack of it. Because sometimes it takes a big risk to divulge and explore your inner self in order to rise above the pain, the despair, the constant disappointments and the sheer terror of living with AIDS.

About me - I pull no punches. I throw them. I'm the kinda girl who says it like it is. I try to be as kind as I can, but sometimes it takes a kick in the gut and someone to tell the truth to make you stand up and deliver. I try my best not to be rude. But I admit that most people don't like to hear it straight. So, I'm working on my delivery. Sometimes it hurts to tell the truth and I feel the pain and sometimes suffer the consequences. But I must speak the truth, even if it works against me.

So, here it goes -- my new journey of blogging about living, dying and surviving a long time with AIDS.

We're all faced with life and death decisions, and it's no coincidence that I'm starting this blog at the cusp of one of the most important elections of our time. Politics has given me a reason to keep fighting ... against discrimination, ignorance, ideology and the bad polices of this administration (and others) that have fueled this disease for far too long. I realized that the only way to survive was to learn how policies are made and what must be done to change them. There's a lot of talk about Iraq, but what about AIDS? What is the next President going to do to address the issue of AIDS in the USA? Where does he stand on this topic? Does he think that the "free market" will take care of us? Does he think that insurance companies will "compete" to cover us for our astronomical health bills? I don't know about you, but Blue Cross/Blue Shield and Aetna are not "competing" with each other to cover me. What about PEPFAR? (President's Emergency Plan for AIDS Relief) Do the candidates want to cut funding if it includes "family planning" rather than "abstinence"? These questions must be asked and no one is asking them. Where is the outrage? Have we gotten so brainwashed and become so complacent, self absorbed and lazy that we don't even want to keep our elected officials accountable? Where is the media on this issue? Where are WE on this issue? Do we really care enough to make our voices heard? These are issues that matter most to me.

I'll end this entry with some words from a song by Bruce Springsteen, my favorite singer, musician, songwriter, philosopher and political activist.

"Well now everything dies, baby that's a fact. But maybe everything that dies, someday comes back. Put your makeup on. Fix your hair up pretty. And meet me tonight in Atlantic City."



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