The kid told me this story with such glee I had to laugh. I had just finished my 55th lecture in three months, but this one was different. It had been a long time since I spoke about living with AIDS. "AIDS is out. Can you speak on anything else?" my agent asked almost 14 years ago.
Since then I developed a whole series of lectures from body image to sex. But a student at Providence College was doing an independent study on HIV/AIDS and had gotten ahold of my long remaindered book, A Positive Life: Portraits of Women Living With HIV. It was not exactly a best seller -- it's a coffee table book on women and AIDS. Somehow it came into his life, he tracked me down and asked me to come speak. He also asked, "Since we're a Catholic college, please don't even mention condoms or anything, you know, too racy."
If the kid had not been so earnest, I would have skipped it. But it all worked out fine. As I walk up to the podium, he said, "Fuck it, I am going to graduate, go for it." So I did.
I start right in with the part about thinking I met the man of my dream in my last year of school at Hunter College in 1990. It's just one of my set-up/punch lines that I had been using for years to gauge the humor quotient in an audience. "So, I met this guy, you know what I mean that kind of guy, gal, species, whatever, the one that makes your heart go pitter patter. When you walk into the same room as him you have to excuse yourself and go to the ladies room ... and put your panties under the blow dryer."
They roar. It's not that it's that funny a line, it's just they realize this is going to be a whole lot different than they thought. I hear a collective sigh, they relax and I'm off.
An hour and a half later I walk out into an end of April, Rhode Island evening. It's dusk but I can still see the tiny buds on all the trees. It's my favorite time of year, a time of rebirth, or maybe just the hope that things will be different. I laugh to myself, "I'm still alive." Christ, maybe that is why I don't get a lot of callbacks. They all think I'm dead.
Here I am, 22 years later surviving not only AIDS, but an unruly bone marrow disease that nearly killed me more than once. After eating some Japanese food with my new Catholic buddies, I head over to my friend Rick's house where I am going to stay the night.
Margaret, his wife, answers the door. "Oh, my God! You look great, you got so skinny!" She holds me by the shoulders and looks at my newly svelte bod. Then all serious, "You're all right, aren't you?" Oh yeah! For the first time in 18 years I feel all right. I explain how the AIDS cured my other terminal illness. All I have to do is take a handful of pills every day and I don't have to do the weekly chemo-like treatment that I have been doing along with steroids and Procrit for the last 13 years.
Read that again. Every fucking week for 13 years.
Each Friday my nurse, Sue, same one for nine years, would come over and stick an IV in my arm. Often she would laugh and say, "You know, I can barely tie my shoes but I never miss your vein!" I have probably spent more time with my nurse than anyone I know. She is the only right wing, born-again Christian I have ever known so intimately. We have the most amazing conversations, though I steer clear of anything political while she is sticking the needle in. The great thing is I can always run by any Bible references I might need to use when I am invited to some of the more conservative conferences or colleges. I don't know why they invite me. I have a reputation for being notorious but on paper I look good: author, poet, Ph.D. I often think someone in the organization wants to be naughty so they invite me to shake things up. No matter how much I edit, I still seem to offend someone.
I'd taken a Vicodin to numb the side effects, but still feel like I'm crumbling. After about an hour she's done. Then the super shot of Procrit. I sing at this stage of the game or make some loud noise because it burns so much. After she packs up and leaves, my husband, who has been with me for seven years and has never missed a Friday, runs me a bath and helps me in. He holds me while I shake and shudder. Finally I crawl into bed, and curl up in a fetal position with Lola, Bear and Buddy, our three terriers who position themselves around me. Their furry needs distract me as I drift off with the help of another Vicodin.
When I wake up I feel like someone beat me, put me in the trunk of a car and drove down a bumpy road. I drag my butt out of bed and try my best to get on with the day. Sometimes I even have to get on a plane and fly somewhere, or finish a piece on deadline. If I am lucky I can just sit on the deck and drink tea. The next day is a little better, I only feel like I slept in the trunk. By Sunday, just slapped around, Monday unplugged, Tuesday is like that day right before the cold is gone. Wednesday, a little weak. Thursday I feel good, all right! Then it's Friday. Again. 13 years.
When I was infected with HIV, my immune system went into high gear and kicked HIV's ass. It did a shock and awe campaign. Essentially my own immune system destroys my bone marrow on a daily basis.
Idiopathic thrombocytopenia purpura. Some people do respond to treatment and it goes into remission, but because of the HIV or some other unknown element, it progressed to the point I was in critical condition every week.
I rapidly go from HIV-positive to AIDS when my immune system finally gives up. Uncontrollable infections coupled with the inability to find effective treatments put me in bed unable to work for the first time. But hey, my immune system can't save me from infection, but it also can't kill my marrow! No more IVs. I have to laugh when I realize AIDS cured idiopathic thrombocytopenia purpura. I wonder if I could market it?
Now I must battle AIDS. Two years drag by filled with every side effect known to the drugs that treat the disease. When I read the inserts for the meds, they list things like, "headache, nausea, fatigue, metallic taste in your mouth, kidney failure, liver damage, death. If any of these things happen, please contact your doctor immediately." I guess I would need a Ouija board for the last "side effect." I always get the thing right before death.
One time I'm flying to San Diego and I'm feeling warm. I ask the flight attendant to turn up the air, but I keep getting hotter. After my third request he says, "Honey, you need to go look in the mirror." I go in the bathroom and I'm startled to see my face and neck flushed red. When I pull down my pants, I'm shocked to see my whole torso covered in flaming red bumps. The rest of the flight doesn't go so well for the guy sitting next to me, who probably paid for his first class seat (I'm usually upgraded for all the miles I fly) as I break down in a crying jag, "I have AIDS. WHAAAA."
I go to the emergency room when I arrive in San Diego. They tell me I have Stevens-Johnson Syndrome and I am shot up with steroids. Insane, miserable, and scared, I still do the gig. Not my best performance.
I finally find a drug combination that does not try to kill me and here I am at Rick's door feeling like I can do just about anything. Sometimes I want to shake total strangers and just tell them, "I feel good! You feel good? I feel good!" I didn't know how sick I was until I stopped being sick.
For the last 17 years I have been dragging myself around the country doing lectures and performances and writing books on an empty tank. Now I am filled with premium unleaded ready for anything. Recently I re-did my website and I put my book A Positive Life up in slide show format. It took me days and when I finished it was beautiful (you can see it www.riverhuston.com under "A Positive Life" lecture). I cried every time I played it. So many of the women in the book have died. For some reason I was spared. I am in the bonus rounds of my life. With the advent of new medication I might actually live until old age unless, of course, I get hit by a bus. The challenge is to still live my life each day as if it is the last.
River Huston is an award-winning poet, author, and performer. She gives lectures around the world to universities, conferences, and celebrations of all sorts. River is currently performing her one women show, "Sex, Cellulite and Large Farm Equipment: One Girl's Guide to Living and Dying" in theaters nationwide.
To find out more about River Huston, visit her web site.
You can see River live performing her one-woman show, Sex, Cellulite and Large Farm Equipment: One Girl's Guide to Living and Dying, August 9-21, 2008 at the The International Fringe Festival in New York City. For more info go to WWW.FRINGENYC.ORG or call 866-468-7619.