NEWS: SG Community Diary: NicoleLee and Hepatitis Day 2008

CULTURE: SG Community Diary: NicoleLee and Hepatitis Day 2008

Monday, 19th May, 2008 is World Hepatitis Day. This year’s campaign slogan is ‘Am I Number 12?’ which highlights that approximately 1 in 12 people have chronic Hepatitis B or C. With those kinds of figures, it isn’t unremarkable to learn that one of the 1700+ Suicide Girls has the disease. What is remarkable is the strength, determination and vitality of that Suicide Girl, NicoleLee.

NicoleLee is a Pittsburgh resident, who spends her time studying English Literature and waitressing with ‘crass, sass and class.’ She describes her last six years as being the ‘greatest and worst’: having been to jail, started modeling for SG, getting married, getting sober, and being on house arrest for 15 months (not in that order).

NicoleLee has never been afraid of exposing her world to the SG community, which is clear from her blogs and sets. This interview was her idea; please applaud her bravery for opening up about this one aspect of her fascinating life.


Anarchie: What is Hepatitis C?

NicoleLee: Hep C is a blood virus that essentially affects your liver. A lot of people have created nasty assumptions about it and think that it’s like HIV - but that's hardly the case. There are six different kinds of hepatitis, each with a different letter to identify it. They all have different levels of severity, transmission, longevity, and prevention. If you want to be frank about it: Hep A you get from consuming faeces (in food, like the green onion scare in 2002 that ultimately closed down the restaurant chain ChiChi's), Hep B is the sexually transmitted one that teenagers typically get vaccinations for, and Hep C is incurable.

I have acute Hep C. What that means is that like most people that have it, I got diagnosed about six months after I contracted the virus. The two particular levels that my doctors pay particular attention to were elevated to a near-fatal level. I never found out what "fatal level" was, but they said at the time that they had never come in contact with someone as young as me (I was 19 when this all took place). The levels simply measured my liver functions and how healthy it was, which it wasn't.

There are treatments for Hep C, but no definitive cure. About six months after my diagnosis, I looked into the GrandDaddy Treatment that had helped the most people into remission. The treatment would have consisted of daily self-injections, blood tests, and a small handful of pills and would last for a year. The success rate was 30-60%, and was rated higher in younger people and in women. That was me all over! I watched video after video, and eventually I cast a NO ballot. Not only was the treatment about as expensive as a Toyota, but the side effects were synonymous with chemo and topped off with a batch of severe depression. At 19 years old, I didn't want to be any more depressed than I was, and I certainly didn't want to spend $30,000 on something that wouldn't guarantee me anything.

To date, I have never entered in any treatment programs or have taken any medications.

Anarchie: How did you contract Hepatitis?

NicoleLee: I can't pinpoint how I contracted Hep C. If I take a backwards glance, the "risky" behavior that I had engaged in six months prior to my diagnosis was getting one piercing (which was my tragus in my ear) and having sex with my boyfriend (and I didn't have a prior active sex track record, either). He checked out fine, and I couldn't just run into the piercing shop waving red flags and pointing fingers. So, to be perfectly honest, I don't know how I got it.

Everything seemed so blurry, and I didn't limit myself to a six month window. I pretty much gave myself a full on interrogation and background check, to no avail. I still shrug my shoulders in disbelief that I managed to acquire something to this extent without exposing myself to threatening environments. But I guess that just goes to show, doesn't it?

Anarchie: When did you first realise you were unwell? What were your thoughts when you were given the diagnosis?

NicoleLee: When I first started feeling something going on that didn't seem right, I just thought I had the flu. I would get out of breath when I walked up a flight of stairs, food didn't sit well in my stomach, and I was vomiting. I would break into sweats, and then become cold. I had a fever that kept me restless, and then would put me to sleep. I felt nauseous.

On a Wednesday after school, I came home and felt physically drained and went to the bathroom to get ibuprofen for a headache and looked into the mirror on the medicine cabinet. What I saw frightened me and I ran to my mom, pulled my eyelids down, and told her, "Look at my eyes." They were yellow. We looked up the term 'jaundice' in a medical healthcare book to see what the cause of my yellow eyes would be, when we also noticed (especially with my red t-shirt) that my skin seemed to be tinted as well. The book repeatedly mentioned liver disease over and over, so I called the emergency room. After consulting with a woman, it seemed necessary for me to go to the hospital immediately but I was worried about midterms that week and put off the intake.

By that Friday evening, I had developed intense pains in my lower ribcage when I would breathe and went to the ER with my mom. I was confused at what could be causing these pains, but more so, I was frightened at what was going to happen and what the doctors could possibly tell me. I was admitted that night and taken into a room where I stayed to undergo various blood tests so that the doctors could determine why my liver enzymes were as high as they were. I had tubes sticking out of each arm, and had blood drawn about four times a day that was sent out of town for lab work. I was informed that I would have to stop taking my anti-depressants and my birth control. It was all blurry and confusing, with possibilities being thrown at me as to what it could be. I wrote a lot about that experience in my journal, lots of free verse emerged from being there. After four days, I was sent home.

Two weeks later, I had a follow up with the specialist that was in charge of my testing at the hospital (my hepatologist was a really sweet guy that had been at my side for the duration of my stay), and with my current boyfriend at the time holding my left hand and with my mother holding my right, the doctor told me that I had tested positive.

Severe depression hit me and took over for the following few months. My future was indeterminable, I didn't know how I contracted the disease, and most importantly, I didn't know if and when it was going to kill me. I was afraid that I would never be able to have children; everything looked so bleak and with a solid brick wall at the end of the road. It was fucking terrifying. Just fucking terrifying.

Anarchie: Sounds like you were in a really dark place then. How did you overcome this? How did you get to where you are now?

NicoleLee: Oh. My. God. The shit hit the fan for me. The holidays were horrible for me because all I could think was, "This is my last Christmas, I'll never have a family to share one with, I'll never have kids of my own." I was on the brink of killing myself. You can take that literally, because I certainly did try.

After that, I was put into an intensive outpatient treatment with a bunch of women that were sitting in their seats twitching and scratching, some with bags under their eyes that you could stuff an elephant into. They were so pale, they didn't speak up, they made ME sad. I didn't belong there, I just knew it. I knew that whatever I was feeling was inside my head and that if I just stopped believing that I was a hopeless piece of shit - then I WOULDN'T be a hopeless piece of shit.

I withdrew from the program, stopped taking the "liver-friendly" anti-depressants, and wrote. I wrote every Goddamned day in my journal. Rather than thinking about what I might not have in the future, I started living in the NOW (or, the THEN, rather).

Don't get me wrong. It wasn't all sunshine and daisies. For a long time, I allowed myself to think, "If I already have a fucked up liver, it won't matter if I make it worse" and dived deep into drinking. Guaranteed, most of the people that have met me from the website have some kind of story for you about "One night when Nicole was wasted..." and they're telling the truth about all the good and bad things. Blackouts, bruises, fights, breaking things, wrecking my car, rolling my car, numerous DUIs, numerous outpatient rehab programs, house arrest, jail jail jail jail. Everything I did had the justification of "Fuck it!" Then, when I finally realized that I couldn't keep on living like that, I quit. A few months later, I was put on house arrest for over 15 months.

Sobriety did a number on me. House arrest did a number on me. All of these are things that I would have never been BLESSED to experience were it not for getting sick, getting sicker, and getting my shit straight. Truth be told - I'm thankful. I've been able to turn pain into triumph and not live in my yesterdays.

And I know its done wonders for my health, as well, because those two important liver enzymes have improved over 90%.

Anarchie: What are the most common misconceptions about Hep C?

NicoleLee: Without getting scientific (because anyone can research that on their own), I've come across countless people that simply think that Hepatitis (C, specifically) is contagious along the lines of an STD. But multiplied by a trillion. Have sex with a carrier? BOOM. Have tattoos? Piercings? BOOM. You're as good as dead. Obviously, that's not the case because HERE I AM.

Not to go ahead and call myself a whore, but I'm not an innocent girl with a zipper built in between her legs. I can say, today, that none of my sexual partners have contracted Hep C from me. Use condoms, kids. Just be smart about it.

When I get tattooed or pierced, I'm honest with the artist about my condition. If they are any sort of professional, it shouldn't matter because they will already use sterile machines, needles, tubes, etc. and the blood cells that could carry on Hepatitis won't go anywhere but the trashcan.

You won't get it from making out with someone, using the same toilet, using the same fork. Let's be honest - if you're going to swap your biohazard, you need to be informed of ANYTHING and EVERYTHING you could end up contracting.

Anarchie: What are your plans for the future?

NicoleLee: It’s virtually impossible for me to sit here and talk about this in order to make anyone fully understand. If I look at myself in the mirror, or I open my journal and see my own handwriting, my words in haste written for myself. There's so much more than just "the future". I've gained so much more. I have earned the respect of my family. I have earned the respect of my co-workers, my boss, and the people that have stuck with me. I know what LOVE IS.

I want to write. I want to write about me and what I've done. I want to write about what I've seen, what I've felt. I want to be happy with my husband and start a family. I want to keep on with my "discography." I don't want to be afraid.

In my opinion, Hepatitis C can kiss my ass.



SG Community Diary is a Newswire feature intended to highlight some of the wonderful, interesting, and amazing stories of this website’s models and members.

Please contact Anarchie or Fatality with any other potential stories!

Thanks for the interview NicoleLee, you're amazing.

I just met you this weekend..so reading this had more of an effect
thank you for the information and sharing..
I enjoyed the interview and meeting you
keep kicking Hepatitis C in the ass...your an amazing lady
xoxoxoxox

Wonderful!

Amazing lady, thank you for sharing

Fab interview ladies ... thanks for sharing .

Very inspiring, I think you're ace.

great interview.

You are one heck of an amazing lady! I have more respect and admiration for you than you will ever know

You are a brave and amazing woman, NicoleLee.

Awesome article.