Reflections of a Pastor Living With HIV on World AIDS Day 2010

[Sista Pastah]

I have had a moment to step back from December 1, to think about HIV/AIDS and its impact upon my life.  To say that living with the HIV virus hasn’t been easy is an understatement, and yet, I have been lucky in that I have not suffered any major medical setbacks.  Well, there is high blood pressure, diabetes, depression and periodic anxiety attacks.  I guess you can call those medical setbacks, but they are managed very well with the multitude of medications I am on.

Before I delve any deeper – I needed to get the meaning of the word “support”, and I found one that really caught my eye, in greek...

the word “telamones”, which is used to describe a figure of a man used as a “supporting pillar”.  That struck me as an amazing image.

So, with this in mind, along with the standard definitions of "support"...I reflect upon World AIDS Day 2010

In my “regular” days, (if you can call being a pastor regular), I live my life a day at a time...sometimes minutes at a time.  I take my medication and I keep it movin’.   It is not often that my disease takes a hold of me.  I make my monthly visits to my doctor (whom I love dearly) and go over my numbers.  I am still undetectable, though I get yelled at for sneaking too many candy bars, and we talk about my children.  I think my anxiety level reached its peak during the months up to my last child, my son going off to college.  Now THAT was a horrible time for me.  Happy that he was moving on to a new phase of his life, but so vulnerable and so afraid for my own life, now that I was going to be alone.  Only another mother, especially a mother with a son; only a single mother with a son can fully appreciate what I am saying.  My son was my support in a way.  He was the pillar that unknowingly held me up sometimes.

It is only on December 1 that I truly take a moment to pause, and think about ME...and my life.  I don’t have a problem speaking out and against the stigma and discrimination this disease has visited and still visits upon those who are living with HIV/AIDS.  I don’t have a problem being “supportive pillars” for those who are newly diagnosed and afraid, or living with the virus and have no one to talk to.  I don’t have a problem speaking “my” truths, although it usually ends up being difficult for others to hear.

I do find that December 1st is the loneliest day of the year for me....painfully so.  I miss Warren, my husband, who fell victim to this disease, not because he didn’t take his meds (which he didn’t) but it was the shame and fear of rejection which kept him from even going to the pharmacy and filling the prescriptions which might’ve given him a fighting chance.  The shame and fear of rejection which kept him from reaching out to others, which kept him from finding that “support”; those “telamones” – the people who would be supporting pillars for him.  I miss him all the time, but I miss him terribly on December 1st.

I miss Warren’s best friend Buckum.  I didn’t really know him personally until the end...but the image of him isolated in the hospital back in the early 90’s, when the fear was really at its peak, stays with me.  I remember being in the hospital room with him, refusing to put on that gown that would prevent human touch.  I remember holding his hand and my husband close to tears, because he probably knew in his heart that he was next.  He and Buckum shared needles.  I remember that subway ride home in silence, and me holding my husband’s hand.  I tried being a pillar of support for him as he transitioned from life into death in a cold hospital room.  I remember the nurse telling me, “no, you cannot lie next to him in his bed”.  I remember hugging his sister in the hallway, when it kinda became apparent that he was not going to make it.

I remember Andrew Marchant, my very first gay friend from Staten Island.  We had so much fun together, until I left Staten Island to go into Phoenix House (drug rehab).  Andrew and Bucky and ‘em shooed me away with “she’ll be back”.  Their gales of laughter only made my resolve stronger that I would NOT be returning to Staten Island or THAT way of life.  Little did I know that Andrew would be moving to Manhattan and would call me about three years later, for me to come visit him at the place he was staying.  He slept on a mattress on the floor, and as the disease racked his body he couldn’t stand up straight, and would ask me to walk on his back.  I remember him coming to my home in the Bronx, his body marked with the Kaposi Sarcoma lesions, which were so familiar back in the day.  Months later, I remember getting a call from him crying:   “please come see me.”  I went to his place, to find him still on the mattress, but in total darkness.  The shame and fear of rejection would not allow him to let me see him ravaged.  And so, I sat on the floor next to him in the dark rubbing his feet and trying to make him laugh...knowing full well in my heart, it would be the last time I would see him.  I tried to be a pillar for him...and I guess in my limited knowledge of the disease, I was.  I was his friend, even though he was still using, even though he had full blown AIDS.

During my residence at Phoenix House, I remember Cheryl.  A white woman who was shot down from Yorktown (the adolescent rehab facility).   When we got some clean time under our belts, we were sent up to Yorktown to be role models for the teens...unfortunately, the teens made it their business to get us to do things that would get us “shot down”, back to the city.  Cheryl got shot down.  I don’t know what she did...but word was before she even got there that she had AIDS.  I remember she ate with different plates, cups and silverware.  I remember being one who “whispered about her”.  Little did I know, it would be me in a few years....

So many people I remember, who have died in the struggle....

Times may have changed (a little).  Medications are available, which afford us to live longer healthier lives.  No longer can you recognize someone walking down the street that has the disease, people are no longer emaciated with that sunken look, with the lesions all over their body.  Times have changed.

That is, unless you take a trip to Africa.  I have been twice.  My first trip was the most memorable.  At one of our stop-overs, I had to have my medication refrigerated...and Nomsa (our gracious host) had to get the medication for me every morning.  She recognized the medication and took me aside to ask me if I had the virus, and then told me about a support group which met there, that morning.  As the rest of our group went on their itinerary for the day, I was able to stay behind to meet with my brothers and sisters.  I had a carry-on bag filled to the brim with medication, and as I got to know a few of the women, I found out that one of them, Judy suffered with thrush...but had no way of getting medication.  I gave her my whole bottle.  Back in 2004, one had to have full blown AIDS in order to be put on medication.  I felt so bad.  I would later find out from Bishop Phaswana at am AIDS convention in Canada that Judy had died.

I remember Dina.  I remember the “hospital” she was in, if you can call a room with holes in the walls covered with plastic to keep the wind out - a hospital.  If you can call a room big enough for one person to be filled with six, that was the hospital Dina was in.  Dina was completely wasted and curled in a fetal position.  Her family and myself sang “Blessed Assurance”...they singing out-loud, I sang in her ear.  I remember Dina...I will never forget her, or the members of the support group, from DAM:   Diakonia AIDS Ministry of South Africa...in Soweto.

I have been in the fight for quite a while.  Have attended a few AIDS Conventions.  In 2006, attended the one in Canada, where Bishop Hanson called for religious leaders to take a stand on HIV/AIDS...to get tested.  It was in Canada that he and I talked about my coming out nationally to the ELCA.  There never was a question that I would...but I had to be counseled on a few things from him, such as “being careful of becoming the poster child”, “to be careful that people do not use you for their own agendas”, “to be careful that I become something more than my disease”.  I have managed these things very well.

However, occasionally, I do feel the need to rise up to the occasion again.  To get real public...and to talk real talk (even if it ruffles a few feathers) because quite honestly, sometimes I think people forget that this is still a terrible disease, still a pandemic...sure, we have medication, but I think some people have the propensity to get careless because they KNOW there are medications.  And the real funny thing is (well, not funny) is that the people you thought would be your pillars, the people or institutions you thought were in your corner, were supportive of you, sometimes have a funny way of showing it, if they show it at all.  And I have to “be careful and guard my heart”, (something I remember from a sermon Reverend Craig Satterlee-the guest preacher at baby pastor school) preached to us.  Guard Your Heart.

I felt really sad last night as I waited for folks to come out for the showing of The Lazarus Effect, and no one showed up.  No one, except the woman who came to cook up some spaghetti.  With the exception of her, I sat with the projector and table facing the stage, with chairs that had by chance, been put up there.  I felt sad, because those chairs facing me seemed to be the silenced ones:  Warren and Buckum, Dina and Cheryl, Andrew and those I know who are living with the virus, but are quiet about it, because they are afraid of what others might think; because of the stigma, because of the shame.

I got up, and got the ribbons, and placed one in each chair in memory of everyone I know or have known.  I even put a ribbon in a chair for Byala Liteta, the 11 year old who was featured in The Lazarus Effect, a 30 minute documentary, which followed 4 people for 40 days as they began their treatment and underwent miraculous recovery, became healthy in body and mind.  Byala was featured and was doing well, but has since died a year later, at the age of 12.  She died this past August.  That makes me so sad....and sooo angry.  It just shouldn’t be.  30,000 people living with AIDS just shouldn’t be.  People walking around and not knowing their diagnosis, just shouldn’t be.  People being afraid of talking about it, just shouldn’t be.

so...with all that being said.  hello ... hope to make a coupla friends here!   

http://m.philly.com/phillycom/db_/contentdetail.htm?contentguid=101RF0BW&full=true#display Pastor Lives With HIV and Preaches About It.

[ElZorro]

That has got to be the most profound message about this disease that I have ever read. I am sorry for everything that you have been through and everyone that you have lost, but thankful that you took the time to share. I hope you're able to share some additional advise on how to overcome the stigma and the shame that is associated with this virus. Personally, I would welcome the ability to face this disease with the strength and courage that you apparently have.

My condolences on the loss of your husband. I'm sure that your work is a credit to his memory.

  Z