Idol Conflictions.

Systemic lupus erythematosus SLE or Lupus) is a chronic autoimmune disease that is potentially debilitating and sometimes fatal as the immune system attacks the body’s cells and tissue, resulting in inflammation and tissue damage. SLE can affect any part of the body, but most often harms the heart, joints, skin, lungs, blood vessels, liver, kidneys, and nervous system. The course of the disease is unpredictable, with periods of illness (called flares) alternating with remission. Lupus can occur at any age, but is most common in women and particularly non-Caucasian women. Lupus is treatable symptomatically, mainly with corticosteroids and immunosuppressants, though as of 2007 there is no cure. The origins of the name are uncertain, but may derive from a characteristic reddish rash that purportedly resembles a wolf's face. - Wikipedia

I never thought that American Idol would make me cry.
I was wrong.

Tonight after arriving home from work I sat down to watch the TiVo'd episode that had aired earlier. I already knew that Brandon made it safely to the next round because our friend Zack went to see the taping tonight and I couldn't take the anxiety not knowing was causing me, so I allowed him to spoil it for me. But, I still watched when I got home to see how Brandon fared in the cheesy group sing along and to see if Zack made it on camera.

The final casualty of the night was the only other person I'd be happy to see win: Leslie Hunt.

Up until yesterday I'd been saying that the only person I wanted to win was Brandon. I lied. I at least wanted to see Leslie make it through to the final three. There's a reason for this, aside from her talent. Leslie has lupus.

So does my favorite woman in the world, my mother.

It may sound odd to you that I wanted Leslie to go far in the competition because of her lupus, but it's true, I did. You see, what lupus lacks that so many other causes have is a celebrity face to help bring in the money. The study of this disease has been put on the back burner by the government for over forty years. Which is how long it's been since the FDA has approved a new treatment for it. It's categorized as "treatable" but it's treatments are painful and archaic. It's seen by some as "not that serious" because they're comparing it to cancer or AIDS in their heads. But what they don't know is that it's hard to live with and just as serious. And the only reason they don't know is because there isn't enough awareness about this disease.

I'm a person who hyper-focuses on the details of a scene around me. My mother told me the other day while we were recapping our thoughts on Brandon's Tuesday night performance that she'd received her LUPUS FOUNDATION OF AMERICA newsletter and that it mentioned that one of the top 10 girls had lupus. Instantly I knew which one it was. I had noticed last week during the girls' night that Leslie's hands looked familiar. She has my mother's hands. They've aged beyond her years (she and I are roughly the same age, I'm 23, she's 24), the skin's got a different translucence than most, and they look oddly fragile like a porcelain doll's. And then I thought about her neckline, the skin had the same quality of translucence that I've seen on only two people before in my life, my mother's and my cousin's, both of whom have lupus.

Growing up with a parent who has a chronic illness is a scary thing. I remember the first time I saw my mother in the hospital, I was in middle school and I didn't understand what was happening. I remember walking into her room with the window in front of me and my stepfather standing in front of it with his face in shadow because he was back lit because the sun was shining. My mother lay in her hospital bed to my left and there were machines and IVs attached to her. It was the scariest thing I've ever seen. She looked frail and sick. In the sixth grade your parents are supposed to still be super heroes. And in spite of the fact that to me, she could do anything, life had found her kryptonite.

A few months earlier we (my mother, me, my stepfather, and one of my sisters) had gone on a vacation to California and Oregon. We visited Los Angeles on that trip, I was 11. It was the first time I'd been to LA, we rented a Ford Mustang and stayed at a hotel in Beverly Hills called the Sofitel, across from the Beverly Center, the largest mall I'd ever seen. On that first day I told my mother that someday I would live in this town. We spent a lot of time in the sun on that trip, between the convertible, and going to Venice Beach and everything in between. That trip was the final catalyst in setting off my mother's as yet undiagnosed lupus. Lupus and the sun aren't friends. On the very same trip where I found the city I would one day call home, my mother's life began to change.

For as long as I can remember she's been sick. It took a long time for "them" to figure out what was wrong with her. She has one of the most commonly misdiagnosed diseases known to man. The symptoms are so common with so many other things, and it's very hard to diagnose because of this. Treatment for it is very hard on the patient's body. The steroids they use to treat her flareups make her feel sicker than the disease itself.

I want there to be an answer to her pain. I want there to be a cure. I want there to be more awareness of this disease. Leslie making it further in the competition would help this. Because it's always the sister or wife of someone famous that has lupus, and not the celebrity themselves. Think about how much sway pop culture carries. And think about how many spots you see with "A" List celebrities telling you how important funding for cancer research is. Think about how Brangelina wants you to give your money to AIDS research. Then think about the last time you saw a commercial telling you what it costs a lupus patient to live?
Think about the last time Madonna told you that lupus was just as serious as cancer and that, like cancer, only the people who can afford the care get to live? Or that the deductible for someone who has lupus on their medical insurance can actually prevent them from getting the care they need till the year's end.

Oh wait, that's right, she didn't.


I've lived everyday of the last thirteen years worrying about my mother. I can't make it stop, I can't turn it off. I won't be able to until there's a cure for what she suffers from. I'm scared for my cousin's children, who someday will be old enough to understand that their mother is sick, and I know what they will have to go through. I don't want them to have to.

I'm sorry for the people who suffer from this disease that hoped Leslie would be their voice in the spotlight, I'm sorry that they may have lost that chance tonight.


GO:

LUPUS FOUNDATION OF AMERICA
LUPUS LA
DOROUGH LUPUS FOUNDATION
LUPUS INTERNATIONAL



I took that photo with my sidekick yesterday at during sunset. It's the Santa Monica Pier. I chose that picture for this blog because Santa Monica is my mother's favorite part of Southern California.