Does HIV Still Bother Me, After 22 Years?

By River Huston

February 1, 2013

This piece was written in early January, before River left for India (she's there now!).

This morning as I was walking my dog, I was doing a mental checklist about what I need to do before I take my upcoming trip to India. I thought I should get some blood work done before I go. Then, as my mind sometimes does, it wandered. I thought Why not get another HIV test? It has been 22 years since I had one. As I continued my walk down to the ocean I started to fantasizing about what it would feel like to receive a negative result.

"Good news, Ms Huston: You are HIV negative."

Even the words seem foreign: HIV negative. But as I said them in my fantasy nurse voice, my heart lifted and it felt like a huge weight was lifted. I was shocked! After all this time I really did not think HIV had that much effect on me. It has been over two decades. I am relatively healthy, I barely think about HIV except when I take my meds and that is usually just a thought, "Don't forget the pills!" Done. But in this little daydream I was free of the pills, I was free of being seen as someone who is diseased (Just go on a regular internet dating site; the phrase, Disease and drug free, you be the same is common).

It would mean saving thousands of dollars in health care each year, and no more quarterly doctor visits. Gone would be the underlying fear of getting sick, especially when I travel overseas.

I also realized I still had despair and depression about carrying the burden of living with AIDS. It made me maudlin and the rest of the day I kind of gave up. Every day I walk, eat right, try and connect with someone for a laugh, write, paint, a whole host of activities to keep my spirits lifted. I didn't feel like it today and went back to bed. Had a pity party and no one else was invited. (Until now; welcome everyone!)

I have fought for all these years to not let HIV get me down and I believed I had conquered it but after my morning walk I have come to believe that you cannot outrun your reality. This is my hardship in my life. It affects me in a myriad of ways, some I was barely aware of until today. So what to do? Give up or continue to do the work? The option to sit in my room and try and sleep it away didn't really work out well. So onward I go.

As I write this I am sad but oh well, that is life. This month three of my friends chose to commit suicide. Their demons got the best of them. It has been shocking, distressing and in one case devastating. So there is always that permanent exit, but I see I have a choice. Today I grieved another kind of loss. I mourned for the life that could have been if I had not become infected. Who knows what it would have looked like or what challenges I would have faced? AIDS, yep, I said it, is my forever roommate, bad houseguest, crappy relationship, but I don't have to think about every minute of every day. I can let these thoughts sink back down into my unconscious and add a prayer in the morning for a cure.

Battle Weary: A Poem

12/27/12

Is it over yet?
crawling from a foxhole
made in the dirt
thirty years deep
the bodies are piled up
some old as cordwood
other freshly departed

Goodbye Ben
baby honey boy
you texted me
just last night
don't get it bro
but you're in God's hands now

You didn't get the memo?
it gets better, man
but I get it
you just worn out
worn down

How long can you live
with death firmly planted by your side?
it's that way for everyone
but for us it's visible loud
intrusive
bony hand on your shoulder reminding you
of everything you ever done wrong

I manage it
just some days the insides
turn to mud
and i can't get a grip

When the smoke cleared and the artillery
went from heavy mortars
to the occasional sniper fire
you'd think I'd handle it
cause i did the big fights
I survived sister
but it seems to have gotten worse though
when everyone was dying
somehow it was easier
it's that lone warrior
falling when you least expect it
it takes me down every time

This sadness is fierce
grief rolled up like punch
my ghosts
are loud
especially late at night
waking to conversations
long forgotten

My love, my love
how i miss you

Sunrise brings another day
some tea
put on the good face
the sea helps
if it doesn't make me cry
it gets me through another day

India

Being

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Reader Comments:

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Comment by: Julius (Costa Rica) Fri., Feb. 8, 2013 at 1:49 pm EST
I know the feeling, but i also think we´re lucky and we were given an extraordinary chance at health conditions other people only dream of...so whenever i´m on that "pity party" myself, i do what you did, get over it as soon as possible and get on with my life. Hang on...it´s a bumpy ride but it´s better than no ride at all!

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Comment by: Neal Rzepkowski, MD (Cassadaga, NY) Thu., Feb. 7, 2013 at 10:41 pm EST
In July 1985 the antibody test first was available to the public in my area. I tested my gay friends and myself. 3 weeks later the mail brought the results. Some were negative; others positive, including me... I a flash I remembered a phrase I had heard years before in a sermon: "No matter what happens to you in life, if you choose to affirm: "This came to bless me" you will find the blessings when you look.s I did and I have. My life had taken twists and turns that have brought me closer to the divine being that I am and more in touch with the divinity in all of us. It was a "wake up call" from heaven. I share my status with my patients. Today I had a new male patient from a doctor who moved away from HIV care after many years. He did not smile. He was short with the nurses. He had a resigned, depressed look. We talked, I examined, and I tried to be upbeat. At the right time, I shared my status of 30 years, and saw his eyes light up and a smile come to his face for the first time in what must have been a long time. He was then very cooperative with the nurses drawing his labs. We parted with smiles and hugs. I thank Goddess (insert your preferred term) that she gave me the opportunity to touch someone like that and be touched equally joyfully in return. Thank God(dess) that I'm HIV+! It has brought me lots of joy in my life that I otherwise might have missed. I'm not looking back.
I've had many patients in the past ( some now in the "Happy Hunting Ground" which many of us call that "Happy Bathhouse in the Sky") who agree that HIV/AIDS was the best thing that happened to them so they live a fuller, richer life that they would have otherwise. I'm in that group. It is my hope that some of you reading this are too. Joy and Blessings, Neal

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Comment by: Jim (Milwaukee) Thu., Feb. 7, 2013 at 3:01 pm EST
Long ago -- before I seroconverted -- I came to attend a talk you gave at Marquette University. At the time I didn't think I would be so careless to become infected. I still thought it would never be me.

Still, your message to a young college student was resounding. Keep on, keeping on....... Stay proud....... Persevere. I needed that advice then just to learn to love myself -- because I hadn't yet. I didn't need it yet to cope with the twists and turns of becoming HIV-positive.

I was so inspired by your spirit, I came up and asked you how you manage to greet the day with a smile when, in fact, and inside, you just wanted to shrink all the time -- hide in the woodwork -- agree with your worst thoughts that you are unlovable.

You told me: ACT AS IF.

Act as if you're happy. Act as if you're OK. Act as if you've got it all together.

Those three words were extremely powerful to me. It was great advice. It was probably the utter beginning of the path to earnest self acceptance I was to undertake. It was a catalyst. I was brave enough to talk to you one-on-one after you talked to the crowd -- and you let me in on The Secret.

It worked for me. It continues to work for me. :-)

Thank you so much for what you gave -- and what you continue to give!

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Comment by: Suzi (Paris) Wed., Feb. 6, 2013 at 4:02 pm EST
River I love your work! your poetry is amazing.

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Comment by: monique (philadelphia) Tue., Feb. 5, 2013 at 11:02 am EST
This is a great piece of written work-metaphors and all.

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River Huston

River Huston is an award-winning poet, journalist, performer and activist. She travels through the United States speaking on issues related to sexuality, communication, overcoming challenges and change. She has been featured on Good Morning America, Showtime, Nightline, CNN and ABC Up To The Minute. River has written three books of poetry as well as The Goddess: A Guide to Feminine Wisdom and A Positive Life: Portraits of Women Living With HIV. She wrote and performed a one-woman show, Sex, Cellulite and Large Farm Equipment: One Girls Guide to Living and Dying off off Broadway and is currently working on a second show, The Dominatrix Next Door. For more information about River you can go to riverhuston.com.

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