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Five Years On: My Diagnosis And Mission Living As HIV+

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This time of year is often melancholy for me, and I often am asked why I tend to be a bit cranky just before Thanksgiving. Rarely have I ever revealed the real reason. Five years ago in November I was diagnosed HIV positive.

Following a serious bout with symptoms that I initially thought were a case of the flu, or just fatigue brought on by my normal workaholic tendencies, I visited the City of Chicago Department of Health's drop-in testing center on Clark Street. While other people were busy shuttling their kids from house to house for candy; donning their fake boobs, wigs, dresses, and high heels for the Annual High Heel Drag Race in Boystown; or getting some action at packed-to-capacity bars citywide; I was living my own macabre "Nightmare on Clark Street" by letting out 10 vials of blood and being counseled on what I might be facing for the rest of my life.

That night, as the medical technician was searching for a good vein to insert his needle, I silently started to shrink inside. Up to that point I thought I had seen my trials by fire in life; after losing a political career in Bush's theft of the 2000 election from Al Gore, in the same week my live-in South African boyfriend trashed my heart by leaving me at Boston's Logan Airport never to be seen again, each coming in succession after I lost all my money and the trappings of the high-flying internet consultant's life when the bubble burst only three months earlier. Here I was, though, as my friends were gathering to celebrate a night of revelry and probably a bit of gleeful debauchery, sitting in a clinic with more fear and terror in my heart than I had felt ever before.

I tried to put on a brave face while gnawing a piece of caramel, as the tech stuck me the first, the second, and finally the third effort to tap a main line in my left arm. Surprisingly, the whole process only took a few minutes, and after a very brief confidential counseling session where I was told it would be ten days before I could learn the results; I was back out on the street to begin the longest 10 days in my life as I waited for official confirmation of what I already knew. I had become one of the millions of people around the world infected with HIV.

Reaching my little rented coach house that night wasn't easy, as I navigated through the surreal scene in Boystown and Wrigleyville, reminded along the way of how I had gotten to this place in my life. The entire way I encountered drunk, buzzed, swirled, and tweaked people, escaping the daily grind of their lives any way they could, all seemingly just on the brink of getting lucky. For the first time since I had experienced the excitement of the urban jungle's favorite night of sex, drugs, and rock and roll, I wanted no part of it. I went home and fell asleep, drained by the effects of the hidden bio-warfare going on in my body and the weight of the psychological burden I was carrying.

I was sinking into the depression and overwhelming doubt that accompanies the long wait, and the days that followed were tainted with self-destructive behavior. As a long stormy wet week of driving rains were swept out by the first cold snaps of November, I eventually cracked under the pressure; sinking into a marathon of pornographic self-indulgence with a string of guys I can't even remember now. With every one of them I had unprotected sex, and made no bones about the fact that I had just gotten tested but didn't know my results yet. Nobody cared, and seemingly all were in the same place psychologically. While growing up in the Midwest hiding our true sexual identities, all bullied by the objects of our desire--the jocks, farm boys, frat boys, and even other closeted "bi-curious" guys; we all had escaped our painful adolescences and moved to the big city. At this point we were free for the first time to be ourselves, and to actually feel loved and desired for who we really were as young gay men in our sexual prime. Nothing and no one was going to tell us we were wrong, and if they did, "fuck 'em," because they had no idea what it was like to be us, and had no right to tell us anything about morality, safe sex, real love, or the perils of real life on this Earth.

Through that madness, though, a beam of bright unavoidable light entered my window one morning, a couple of days before I was scheduled to pick up my test results at Howard Brown Clinic. I woke up laying in my bed with a boyishly cute, athletic, proudly southern, unabashedly nice guy who pulled me closer to him as he slept; unaware I was watching the reflection of us in the mirrored closet doors next to my bed. Studying the peaceful scene with just the two of us laying there, my eyes began to tear up and a sense of joy and bliss filled my soul for the first time in nearly 3 years, because immediately sensed that this guy could be the one that God had sent to my house to pull me out of the morass, and show me that I was loved. He was going to fight for me like no one ever had; to raise me back up to a place where I could understand and appreciate why I was put here, facing the uncertain future of living with HIV.

The day of my appointment I was a wretched nervous wreck. I was still recovering from the sleep deprivation that the prior 10 days had wrought, and I barely pulled myself together to choke down half of a turkey sandwich, gulped down a full bottle of Gatorade in a single swallow, and headed out the door on time to make it to Howard Brown. En route to the appointment, my cell phone beeped with an SMS text from my new crush, telling me he wanted to be there for me, asking me to please call him afterwards, to let him help me deal with the news, whatever the outcome. I didn't quite believe him, but reluctantly agreed to call, even though I wasn't sure I wanted anyone to get this close to me in my fragile state. I didn't want to be hurt again, and my lack of trust was evident in my response. "OK, sure," I texted back, not knowing what I would actually do after I got the news.

I checked in on time at Howard Brown, and was escorted to a closet-like windowless room with a small lamp, a couple of plants, a narrow writing desk and 2 chairs within. I watched my wristwatch while waiting, and 30 seconds later a smiling counselor knocked twice quietly on the door, introduced himself, inviting me to sit down with him. He had my file in his right hand, and set it on the table along with a couple of pamphlets and an intake form for treatment. He didn't even have to say a word, as the look of concern and compassion foreshadowed the news. "I'm very sorry, Scott. Your tests came back positive for HIV."

I was numb, and my ears rang. I barely remember the rest of the appointment, as the counselor ran down my CD4 and viral load numbers. He gave me a copy of the results, and offered follow-up counseling for my new carry-on baggage that would be with me for the rest of my life. Leaving the appointment, I broke down on the sidewalk just a block away from the clinic, ducking into a nearby alley to sit on the ground next to a dumpster. Sitting there, literally in the gutter, I sobbed uncontrollably, hyperventilating myself into dizziness. Suddenly I couldn't breathe, as my chest contracted from the combination of cold fall air and psychological shock trauma to my nervous system. I threw up on the ground next to me, and my throat burned with the searing pain of stomach acid receding back into my gut.

I couldn't move. Here I was, frozen in time, going into shock in the cold hard alley under the Brown Line el tracks along Irving Park Road, with no one around to help me. As I lied there I wondered, "is there anyone who cares whether I live or die right now? God, do you hear me? Why? Please tell me why I deserve this."

I tried to get back up but my shaky legs would not hold me. I fell back to the bricks, catching myself with my left hand on the way down. Fortunately the dizziness began to subside, oxygen started returning to my body and brain, and suddenly my vision became razor sharp, as if I was watching a high-definition film at the Navy Pier IMAX. My cell phone was vibrating in my pocket and ringing continuously, 7 calls in succession had ticked off on my cell while I had been there, and only now was I cognizant that someone was desperately trying to find me.

It was my crush. He had gotten off work, and was disturbed that I hadn't called him yet. Two and a half hours had passed since I had texted him back, and he told me that his natural sense of alarm had told him that I was in trouble somewhere and needed help. He had sensed that I needed him, and as I picked myself up and managed to drag my shaking frame into a passing cab, he rushed to meet me at my house, helping me up the stairs and staying to comfort me. As we sat on my bed I began to cry, and I told him that I was worthless, and that I appreciated his help but that he probably didn't want to get involved with a pathetic loser like me who was emotionally bankrupt and sexually damaged. I told him he should go, that I didn't want to hurt him, or worse, doom him to the same fate of getting this terrible death sentence.

He would not hear of it, and put me in a bear hug, to whisper in my ear. He said that the instant we met the week before, at the moment our eyes met, he instinctively knew that I was going to be someone significant in his life, and that he thought he might be in love with me. He told me that HIV was not a death sentence, and that contrary to my self-deprecating evaluation of my own being, he considered me to be one of the most incredible guys he had ever met. He said he believed that I was given the HIV virus for a reason, that I would survive to tell the tale, and that my purpose in life would be shaped by a larger purpose for my experiences surviving this and my previous calamities. He said he believed in his heart that I needed to listen to my soul and take control of my life and being back, to fulfill the promise that was within me. Finally, he told me that it was going to take an army to keep him away from me, and that there was nothing that was going to drive him off. He was here to stay, and I "had just better get used to it, because we're not in control of our situation! He is!" and pointed upwards.

It was at this moment that from my overall shock and depression, a new page was turning in my life. Just when I could not stand on my own, when I thought my life was nearly over, and when I literally was on my back and did not know if I was going to make it to the next moment; when I asked the critical questions, God answered me with a guardian angel's touch in my hour of need. Over the next several days I rapidly realized that no longer would I be in the driver's seat of my career, life, or purpose. I would learn through a series of serendipitous events that I had been saved for a reason; and that my path was directly tied to this person, for better or for worse.

It was not long after Tim Jones came into my life that an epiphany came to me about why I had been saved from my self-destructive spiral. In a dream that vividly depicted me standing at a lectern, giving a speech to a packed room of people, sharing messages of survival and higher purpose; where I was thanked by hundreds for sharing my story, I saw myself with Tim standing behind me, signing autographs in my newly-published first book. Now, immediately wide awake, I looked beside me to find my mostly-blank journal notebook I had been carrying around for days, but had yet to write anything within its pages. I began writing the original series of handwritten journal entries that gave me the basis of the body of work which became scottsbigmouth.blogspot.com, and now ScottsBigMouth.com. Five years have passed now, and Tim and I celebrated together last month our journey, by recommitting to our shared life path as it unfolds before us.

When I was diagnosed, it was Tim who aggressively encouraged me to explore my writing, and prioritize it above all other things--above money, my consulting practice, and above any other job that I have done in the past 5 years. Fortunately, my bosses at the various Chicago companies and organizations I have worked with also have been very supportive of my work, and no one ever has asked me to stop writing. Quite the opposite, in fact, as many of my co-workers and friends, supervisors and bosses, clients and subjects of my reporting and commentary have become regular readers of my blog.

This year I am telling my story so that people know why today, more than ever, it is unquestionable that we need to re-invest in HIV/AIDS research, medical assistance for the millions of diagnosed and unknown numbers of undiagnosed carriers, free HIV/AIDS treatment and case management at the community level to help people live healthy lives while surviving with HIV, and massively recommit to testing and education for the entire population.

I continue to live with the virus, now undetectable thanks to a new generation of anti-retroviral drugs and testosterone therapy, ongoing support from my family and Tim's family, understanding and compassion from friends, and excellent treatment I have received from providers like The Core Center at Cook County Hospital, Dr. J. Wesley Cook, D.O. Family Medicine, and Access Community Health Care Services at TPAN; I bounced back and for 3 years produced stories and commentary about our world, our country, our community, and issues that matter to Progressives and Centrists of all persuasions and perspectives.

Political, world, and local events this year demonstrated to us that the fight for equality and social justice for the GLBTQ community, people living with HIV/AIDS, the battle of defeating racial and religious bigotry and extremism, and showing people that the politics of division are not the right course for our world are battles that really have just begun. We learned in a handful of states that the Mormon Church, Focus On The Family and its Founder James Dobson, The Westboro Baptist Church and its leader Fred Phelps, Rush Limbaugh, Sean Hannity, Bill O'Reilly, Fox News, Newt Gingrich, Ralph Reed, Darth Vader Dick Cheney, and Dr. Evil Karl Rove; all poured millions of dollars and airtime into efforts aimed at taking civil rights away from people like Tim and me--all in the shadow of Americans' mandate for change and unity manifesting itself through a massive political shift in the electorate, millions turning out to elect the first Commander-In-Chief of African-American descent in President-elect Barack Obama.

With the announcement of his Cabinet and nominations for appointments and staff, comprised of a well-qualified and distinguished cross-section of leaders and experts in Foreign Policy, National Security, Global Financial and Economic Policy; Mr. Obama has set a new standard for reaching across the political divide, focusing on substance and quality, while simultaneously successfully engaging his new role in a manner never before seen in a President-elect.

New, serious questions popped in to my head, though, while watching him officially announce that his former political opponent, Senator Hillary Rodham Clinton, would become his new Secretary of State, and his choices of Arizona Governor Janet Napolitano as Secretary of Homeland Security, current Secretary of Defense Robert Gates to remain as SECDEF in the new administration, retired Marine Gen. James Jones as White House National Security Adviser, former Clinton Administration Assistant Attorney General Eric Holder as Attorney General, and Susan Rice as UN Ambassador.

With his focus on the major national security and economic issues he faces, what will he actually do to halt the scourge of HIV/AIDS and secure true, unquestioned, federally-mandated civil rights equality for all Americans, regardless of race, religion, sexual orientation, economic class, or marital status?

With all of Mr. Obama's talk of real change, one key area where he has been somewhat hypocritical during the campaign, and silent since the election, is exactly what he's going to actually do for the millions of GLBTQ citizens in this country that unified to become a major block of activist-oriented supporters of his candidacy, and turned out an unprecedented percentage of voters for him? During the campaign he parsed his answers to GLBTQ civil rights, marriage rights, civil unions, and employer anti-discrimination laws to protect us.

He has also been mum on real numbers behind his Universal Health Care proposals, major funding of HIV/AIDS research, testing, diagnosis, treatment, social services programs to support HIV/AIDS carriers, fair and non-ideological sex education, gender equity education, and GLBTQ tolerance and sensitivity education and training programs for schools and businesses, and has not announced his choice of Surgeon General. The selection of former Senator Tom Daschle as Secretary of Secretary of Health and Human Services, however, bodes well to signal that the direction could be a positive one for the GLBTQ and Progressive communities that overwhelmingly reject anti-discrimination laws like Prop 8 in California and support social justice and equal rights for all Americans in the areas mentioned here and coalesced to elect him in a landslide.

Will he actually take his mandate for real change and unity out for a spin by demanding equality for all of the people who supported him, donated money, made phone calls, became activist organizers, and ultimately stepped up to vote for him as their President? Will he truly put his power and position as the great new leader of our country in gear when it comes to representing the best interests of all Americans? Will he commit to re-aligning our country with the significant number of civilized nations that have enacted real equality through national legislation, produced enhanced funding for HIV/AIDS programs to combat the the epidemic and find a cure? Will he decriminalize drug laws while simultaneously reinforcing policies that endorse treatment of addiction as a medical condition instead of treating users as criminals and throwing them in jail where they often are exposed to even greater risks of HIV/AIDS?

Finally, will he really commit to exposing and stamping out all forms of religious extremism by authorizing his Justice Department, the IRS, and FEC to aggressively investigate, expose, and punish those religious institutions within our own country that have crossed the line of Separation of Church and State, violated campaign finance and tax laws by surreptitiously diverting their religious organizations' time, money, and church resources towards political causes like Prop 8, Anti-GLBT and gender discrimination campaigns, anti-stem cell research legislation, and anti-choice legislation?

Each of these questions are left unanswered, and are truly battlegrounds across which our country must cross if we are ever to become a nation of true equals and real civil and social equality. We must not allow our voices to be quashed or ignored, or allow our elected leaders to ignore our calls for a reformed set of national priorities that includes us in the overall plan for Change. We must turn up the heat and redouble our efforts to invigorate our communities towards demanding real equality and elimination of HIV/AIDS and institutionalized discrimination in the workplace, and in society as a whole.

Above all, we must ensure that the last 8 years are fresh on the minds of all of those who think we can do better than we have to truly lead in the global community, and convince them one-on-one that all forms of discrimination and hatred are wrong. We must put our faces in their heads as the people who are hurt by the divisive policies supported, trumpeted, and championed by the Reagan, Bush, Rove, Gingrich, Reed, Atwater, Thurmond, Helms, Buchanan, Limbaugh, O'Reilly, Hannity, Coulter, Ailes, Dobson, Ingram Cheney, and yes, Palin camps. Not one of these hateful and shamefully dishonest brokers of intolerance should ever be allowed to regain power by disseminating hate speech and sewing division through subversive campaigns laced with code words, class warfare, and blatant legislative power plays aimed at marginalizing groups of people under the guise of their ideological reinterpretations of the U.S. Constitution.

World AIDS Day meant more to me this year not because of what I have experienced, but because more than ever I realize my purpose on this earth to keep hammering on the agents of intolerance that contributed to my own story in a very personal way, so as to help free others from having to suffer the pain, discrimination, quiet despair, and downward spiral that I fell into over the past 8 years. This year, I'm telling my story to fight back, letting everyone know that we're only halfway down the path to real equality and justice for all Americans, and a very long way from winning the battle for equality for all human beings.

I hope you'll join me in fighting back, by demanding from our elected officials, community leaders, religious leaders, and friends and neighbors that they take action to join us in erasing discrimination in all its forms, and to give GLBTQ couples like Tim and me the same rights to marriage as everyone else. We need to keep reminding people, through action and visibility, political pressure and vocal peaceful protest, that we will not be the one group of people in our country who are left out of Obama's plan to change our country and establish a fair, unified, committed nation of laws and social equality. We must not rest until everyone is truly treated as equals, without condition, and that those who endorse policies that divide or discriminate have no place in a civilized society.

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http://www.scottsbigmouth.com/main/2008/12/world-aids-day.html