Lupus Diary #2

About a year ago, I ran into an old, family friend – by “old” I don’t mean “long time”, but rather, he’s just this OLD dude I know. It had been several years since he’d last seen me, and he had heard that I had a “health scare” a while ago, so he asked how I was doing.

Doing well, I said. I gave him the short list of all the awesome shit I had been doing since we’d last talked. I placed special emphasis on the accomplishments (Master’s Degree, good job, recordings, performances) and deftly skipped over the unsavory parts (falling down an entire flight of stairs at work, car accidents, failed relationships, failed projects). While I talked, he looked me up and down.

This made me uncomfortable, because frankly, I’d always gotten a slimy vibe from him, and felt that if given the opportunity, he would brush his hand against my ass “by accident”. So, I began to look around nervously for a reason to end the conversation and get away from him (please, God, let a car full of midget circus clowns pull up). Soon, after my voice trailed off, he said:

Well, you LOOK great.

Over the years, I’ve heard several versions of this statement, from the harmless you look great, to the passive-aggressive, backhand slap: if that’s how you look when you’re sick, you should get sick more often (someone actually said that to me, about a week after being released from the hospital). But this statement, among others, merely indicate a deeper issue, which I shall discuss here. In short,

People will never understand what I’m going through.

The minute I realized that and accepted it, my condition became infinitely easier to handle. Before that miraculous moment, however, I was always angry – and it probably didn’t help that I was taking sledge hammer amounts of Prednisone at the time, and I was a raving lunatic. Anyway, for about five years after my diagnosis, I was consistently frustrated and depressed, wondering why everybody was being so callus towards me. To me, it seemed as though my family and friends were ignoring my potentially life-threatening illness, making the same demands they made before the diagnosis. It was years before I realized why.

I really didn’t look sick.

But God help me, I was. I was SO sick. So much so, I was unable to comb my own hair. But try explaining that to someone else. It will usually go like this:

Me: I don’t feel good today.
Them: Really? What’s wrong?
Me: I don’t know – I’m just really tired.
Them: Shit. I’m tired too. I just worked a ten-hour…
Me: No. No. I mean… I can’t lift my arms above my head.
Them: Well, why don’t you take a nap? You’ll feel better afterwards.

This pretty much sums up all of the conversations I had during the first few years. Hell, I still have them every now and then. Basically, no matter what words I use, what flowery, vivid metaphors, people just don’t get it. Not unless, God forbid, they have Lupus themselves. Or they live with someone who has it.

Lupus is really a tricky disease, because it manages to come without some of the telltale signs of other illnesses, while at the same time impersonating other illnesses. A cruel conundrum. A painful mathematical equation.

As for me, I had few indications that I was really sick. Sure, I was tired, my weight was dropping without me even trying, and my joints were on fire – but all of these things could be explained. Tired? I was working 40 hours a week, singing in a band on weekends, and keeping up an active social life. So, yeah. I was tired. My weight was dropping because I had recently changed my diet – drastically. And as for the flaming joints – my job consisted of about 75% data entry. So, just chalk it up to Carpal Tunnel Syndrome. How was I to know that my body was destroying itself from the inside out?

And that’s just it – it happened on the inside first. Lupus was a bad tenant – moving in, cutting up the furniture, pulling pictures off the walls, breaking the linoleum in the kitchen floor… all without attracting the landlord’s attention. So, there I was, The Landlord, going about my daily routine the way I’d always gone about it, except then I was taking extra naps, buying smaller clothes and wearing wrist guards to work.

And I was still looking (relatively) healthy. In fact, the weight loss had done wonders for my social life. I was getting attention that I couldn’t buy less than six months prior. I was loving it. Sure, I had to take an extra nap before going out on a date (and no, I didn’t think that was especially odd), and perhaps take a few more Advil beforehand so that my hands wouldn’t turn into claws halfway through the date (which I also didn’t think was abnormal), but hey.

Friends continued to compliment me on the weight loss, saying how ‘healthy’ I was looking. So you see, I wasn’t the only one ignoring the signs. They noticed the wrist guards, the rapid weight loss, my inability to stand or walk for long periods of time, just like I did. Yet they congratulated me, asked me for advice (how did you do it? You look GREAT!), and everything was beautiful, I thought.

I couldn’t have been more wrong. Immediately after my diagnosis, that awkward period of denial during which I tried to hold on to the lifestyle I used to have, while simultaneously expecting everyone else to treat me differently, I wallowed in self-pity. I’d never felt as alone as I did then – I was convinced that no one, in the entire world, knew what I was experiencing. What didn’t help my situation was that periodically, usually when I was at my most vulnerable, some asshole would say: Wow. If this is how you look when you’re sick, you should get sick more often.

Unbelievable, right? I thought so. Of course, now that I look back on that time, and on those people, I realize a couple of things. One, they’re assholes, like I said earlier. Two, they’ll always be assholes, and there’s nothing I can do about that. Finally, they don’t matter.

What matters, in the final analysis, is that I am living (and quite well, thank you very much) with this condition, and I am my most pressing concern and priority. It has taken me several years to come to grips with this, and finally make the necessary changes in my life to accommodate this new reality. Now, I am an expert in the use of “no”, and have learned to stop and rest when the telltale signs of a Lupus flare-up begin to appear (fatigue, headaches, aching joints, severe muscle spasms, loss of appetite).

I have also acquired the unfortunate ability to prune any individuals from my life, whether family or friends, who do not support my goal to maintain a peaceful and (relatively) stress-free life. Along with this, I am learning to forgive myself for making these adjustments.

And finally, I am able to concede that yes, I do actually look good. For someone with Lupus.

An Open Letter to Chris Brown

How you doin? I see you've been having some trouble lately. Folks on the street are talking about it. I didn't get to see the latest outburst, but I heard about it. Even saw the pictures of the aftermath on CNN, and all I could do was shake my head.

This is not a finger-pointing letter, Chris. In fact, quite the opposite. I just wanted you to know that in spite of everything, I understand your outburst yesterday.

Some of my people will be pissed that I said that, but I really couldn't give a damn. This is between me and you right now.

Now let's get something straight, right away. You never should've put your hands on that woman. Frankly, if that was me in that hospital photo the next day, you never would've made it to the precinct. I mean, I don't know who her people are, but my people would've made sure that if you ever did sing again, it would be through a brand new asshole.

Now that that's been established, I realize that it must be very difficult for someone like you, someone who is clearly dealing with some anger management issues, who has struggled for so long to hide his true nature in order to be liked by everyone.

That must be really tough for you. Because for people like me, the unwashed masses, who tumble through our lives, tangling and untangling in our messes every day, our mistakes are largely our own property. We have this one, clear advantage over luminous minority: we have the freedom to bury our shit.

You, on the other hand, do not have that luxury. Instead, you live under constant scrutiny. The unwashed masses aren't satisfied with just paying a ticket and seeing you on stage. They clutch at your history, your fears, your intimate moments. While clinging with manic intensity to their own privacy.

I realized all of this as I watched your now famous interview on Good Morning America. I watched you struggle with guilt, pain, regret, anger and the rising tide of violence that has probably always bubbled somewhere beneath the surface. I knew, by the way you clenched your teeth during the interview, and the wild, slightly awkward performance afterwards, that you hadn't put it behind you. Needless to say, I wasn't surprised when I heard about your rampage in the dressing room.

What did surprise me, however, was my own reaction. I was pissed. And for the life of me, I couldn't figure out why.

Until this morning, when something caught my attention as I was channel surfing. It was a snippet of a Charlie Sheen interview. I was about to dismiss it as just another replay of that manic, babble-fuck that's been getting a lot of air time lately.

(I mean, even that reporter from L.A. who had that stroke on camera had the good sense to cut it short after she started speaking jibberish).

Too soon?

Anyway, this clip was different. It was an advertisement for Charlie Sheen's new one man, traveling show. Now, everyone around the country can get an intimate look into Sheen's deteriorating, drug-addled mind.

For a small fee, of course. I mean come on, he has kids.

See, here's where I'm going with this. The world will hold this shit over your head for years to come, and give you very little opportunity to redeem or re-invent yourself. You can button up your collar, enunciate your words and take out your facial piercings, but that won't help. You have been branded a menace.

Your image will haunt the dreams of suburban fathers all over this land; they will wake in the middle of the night, their Cosby pajamas wrapped tightly around their sweaty legs, calling out their daughters' names. When they awake, they will remember little, but the sight of you on television will make them uneasy.

True, you've earned your new image honestly. But what if you don't want it? What if you want to shake it off, and maybe try to help fill that enormous hole left in the industry after MJ's death?

No dice, kid.

Meanwhile, in Bizarro World, Charlie Sheen will continue to invite reporters to his mansion, to give a glimpse into his peaceful life with his live-in prostitutes (plural) and his children.

And Mel Gibson will continue to make movies.

And so will Roman Polanski, while keeping a pair of little girl panties in his back pocket.

D'ahhh, well... I kinda understand your outburst after the interview. Personally, I don't do the whole violence-thing. I really can't afford to break anybody's shit right now. So, there are no broken windows in my immediate future.

At least, I don't think so.

As for you, I do think you can get past this, if you learn to accept the following:

You are Black - the Glitterati's rules don't apply to you.

And no amount of broken windows, or new hair styles, or body art will change this.

Once you accept this, you can learn to change your situation in small, yet meaningful ways. You will accept that you are, essentially, a violent man who can't experience frustration without causing pain or hurt to someone else.

And maybe then you will finally, truthfully, ask for help.

Living with Lupus

Lupus is a humbling disease. The medical field has all these highly technical terms for all of the physical symptoms, but at its stripped down funky center, Lupus is Murphy's Law personified. For all of us who actually live with the disease, it's a BASTARD, robbing us of everything fun and sexy and cool.

For me, Lupus was a cruel joke, played on me by the tiny little evil Board of Directors living in my head, whose sole purpose was to hold meetings and plot ways to completely humiliate me and ruin my life.

I was in my mid-twenties when I was diagnosed with Lupus. Before then I led a typical, mid-twenties life, complete with 40-hour work week and full social calendar. I had a nice apartment, a well-paying job and an active sex life (sorry Dad). The possibility that something was waiting around the corner for me, something that would change everything, had never occurred to me. Instead, I was comfortable in my own ignorance, and while nothing special was happening, nothing tragic was either. I was settling into my own mediocre state of bliss. All of my friends loved me, I was beautiful, healthy, and financially stable.

Then, the roof was blown off and I was exposed, squatting over the commode, with my skirt hiked up and my pantyhose around my ankles.

At least, that's how I felt.

To be honest, when I was first diagnosed, I didn't know what I was in for. At that time, Lupus was that hardly-known disease that killed your distant aunt (whose name no one could ever remember) back in the '70s - you know, the one that was married to Uncle Leon, who used to make that lemon cake? The one from Arkansas? With that gold tooth?

Yeah, her.

Needless to say, I was underwhelmed by the diagnosis, which frankly pissed off my rheumatologist. I knew next to nothing about the disease, even though a friend of the family had lived with it for years. I was just so relieved it wasn't AIDS (which was my initial fear), that I practically jumped in the doctor's arms and kissed him.

I had no fucking idea.

Let me just say that my naivete' about the situation was not entirely my fault. My doctor gave me the impression that after conducting a series of blood test to confirm the diagnosis, he would prescribe a few medications and my life would eventually return to normal. This was fine by me, as I was eager to return to my mundane life.

(The Board of Directors collectively shakes their heads. Poor, stupid girl. She hasn't even met Prednisone).

Well, it turns out my diagnosis was by far the most significant even in my life - something that changed everything from my relationships to my diet. That comfortable, albeit unremarkable existence I was settling into would soon become a distant memory.

Sounds dire, doesn't it? Well, it was - at first. Then, a few things happened in rapid succession. First, I was forced to pare away the people in my life who were no good for me. Second, I learned how to say 'no' to people. Lastly, I paid attention to my body. All of these things I either did not do, or didn't do enough before my diagnosis.

Lastly, my priorities came into sharp, clear focus and as a result, I finally accomplished some things I'd been putting off.

Like, finally getting around to building that zombie-proof shelter I've always wanted. And collecting Idris Elba hair clippings (don't ask).

The irony of it all, is that in the midst of gaining a laundry list of restrictions, I was able to free myself from some of my former hang-ups and fashion my life into something more comfortable for myself.

Most importantly, I realized that I am charged with the task of writing about my experience, in the hopes of reaching out to people like me who live with this mysterious, vindictive disease every day.

And hopefully, while reaching out to others, I can somehow help myself deal with the cards I've been dealt.

a love letter to 2010

As years go, you weren't all that bad. I mean, I've had worse (1996 - 1998, and 2007 come immediately to mind). You at least had the decency to miss me with some of the stinging curve balls you threw at some of my friends and family members (and what the hell was THAT about). And the ones that did connect were (in hindsight) valuable lessons. Anyway, what I have now, is a clearer understanding of who I am after our 365 - day affair. Because you've given me the greatest gift that any year could give a flaky, semi-intellectual person like me: the gift of clarity.

Anyhoo, I feel calm and stable enough to see you, 2010, for what you were, and love you for that. Since we met, my purpose has come into sharp focus, and while I may still not be clear about what it is that I want, you've taught me exactly what I don't want.

For example:

1) You remember that string of guys I dated, the ones that kinda leaked over from '09? That group of spineless, self-centered, passive-aggressive dudes who did and said anything to avoid being the bad guys? Yeah. Won't be bringing those guys with me into 2011.

2) That habit I have of spending money on shit I don't need before taking care of important things like, um, the car note? Nope. Not taking that...

3) And that beating-myself-up-over-shit-I-can't-control thing? That's gonna stay behind.

4) Oh, and the way I keep calling myself a "fat ass", and all that? Done.

I know, I know, this is coming dangerously close to a list of New Year's Resolutions, which as a rule, I don't do. However, I'd like to think of it as a list of ongoing projects. These are all things that will take some time to complete, but will be worth the effort going in.

During our brief courtship, I had several revelations about myself; some were uncomfortable, but all in all, I learned things about myself that I didn't know before, or just refused to acknowledge.

Number one, I am a hypocrite. I have caught myself, more times than I'm comfortable admitting, criticizing someone else for doing somethig I was also doing at that very moment.

I am socially awkward. This, I masterfully conceal with jokes and sarcasm. And by "masterfully", I mean not so much.

Lastly, you taught me that I tend to agree with others just to fit in, even when I'm viscerally conflicted. This was probably the hardest revelation that I've ever had about myself, and it took me weeks to get over it. But it was necessary.

So in the final analysis, you weren't that bad. We had our disagreements, but ultimately, I learned some valuable lessons while we were together.

As for the new year, I don't know much about him. Word on the street is that he's different from any other year I've met. Got some good shit for me too, I've heard.

We'll see.

A Prayer for the Stupid, Skinny Young Lady I Met

May you live long enough.

Long enough to feel the slow, permanent betrayal of your own body, evidenced most painfully by the gradual downward slide of your once perfect breasts.

May you one day lose your reading glasses and search the entire house, only to find them in the freezer. And then realize with the worst kind of dawning horror (think Halle Berry in any of the X-Men films) that this is the beginning of the end.

In the distant future, may you keep telling yourself that you’re the “cool granny”, only to catch one of your ungrateful brood rolling his eyes at you as he opens up your Christmas present (another stupid sweater).

May you one day realize, shockingly and suddenly, that you are no longer relevant. And that you don’t recognize anyone on the radio anymore.

And that no one listens to the radio anymore.

In fact, there is no more radio. Instead, it’s a digital devise planted under the skin that receives a signal from a satellite. Which you don’t have, because the numbers are too damn small and frankly, you’re scared of the new technology.

May you live long enough to realize that smart lasts longer than cute. Sadly, because you never really read anything of substance, and only bought a lot of clothes and shoes that you can no longer wear, you won’t even be able to impress anyone with your brains.

May you live long enough to repeat the same damn story every Thanksgiving to your grandkids about how cute you used to be, and be ignored every time.

May you one day hold your grandchild’s tiny hand and marvel at how helpless you both are. And by that time, may you have lost enough of your sense of humor to be able to laugh at the fact that neither of you can control your bladder worth a damn.

May you one day be shocked into reality by the young, attractive man who calls you “Ma’am” instead of asks for your number.

May you be laughed out of a club by the same type of young, attractive woman you used to be.

Meanwhile…

Watch as others, elderly like yourself, are surrounded by the adoration of family members and friends, old and new.

Watch as other women embrace the passing years with humor and grace, their limbs and joints straight and fluid, as yours curl and bulge from the pressure of holding it back with rigid denial.

May they float past you, these women, lustrous and shining, their regal natures in sharp contrast to your shrunken, crone-ish existence.

One day soon, I pray you will begin to cultivate your kinder nature. I pray that you will soon recognize that nature in others, and gravitate towards it.

I pray that one day you will no longer see an older woman as a symbol of a lost fight, a decline into darkness.

But instead, as a sign of survival and wisdom, and God’s Grace.

Stephen King's Under The Dome

Okay, okay. I've been gone for a while.

I get it.

And I'm sorry.

But I have a really good excuse. I've been busy training for the zombie war and zombie proofing my apartment.

Can't really get into what all that entails, but just trust that all that shit consumes a lot of time.

But even though the impending zombie war is a blog unto itself (have you guys noticed all the zombie press lately? Aren't you the tiniest bit curious about what THAT'S about?), that's not why I'm back from my brief hiatus.

I'm here because of Stephen King.

Why, you may ask, is Stephen King the reason you stepped away from the gun range and the planks of plywood covering your windows?

Three words: Under the Dome.

Have you seen this book? Yes. Yes, you have. Except you probably thought it was a Buick.

Dome is King's longest singular work to date, weighing in at a hefty 1,074 pages (or something like that). The hardcover also doubles as a home body sculpting kit. Or a yacht anchor.

I'm a big King fan - have been since the 8th grade, when my childhood friend, a collector of Fangoria magazine and lover of all things horror, introduced me to a meek, socially awkward young girl named Carrie.

It was love at first sight. Here I was, a young Black misfit from a mid-sized city in the Midwest, awkward and often alone, who thought I could smite my enemies if I only squinted hard enough.

Or wished I could, at least.

And then, I met Carrie White.

Hooked. Can you dig it?

I read almost everything he printed from that point on, falling head first into the worlds that King created, emerging mole-eyed and dazed, weeks later.

So when Dome appeared on the shelves, I was excited. I read blurbs about the plot, and was excited. I was prepared to be taken far away from what had become a safe, comfortable life, and was looking forward to the trip.

I got exactly what I wanted. It's just, well...

You know how it is when you go to Las Vegas, and at first it's awesome? You're all excited to be there, you stay up all night the first night, walking around, all google-eyed and shit...

Then the second night, you try the slots...

And the third night, you try to catch Cirque du Soleil or Cher or something...

And on the fourth night, you realize that all the women's boobs are fake.

And that constant noise from the slot machines is getting on your fucking nerves.

And all of the lounge acts are awful.

And by day five, you just wanna get the hell outta there.

That was my experience with Dome - basically, it could've been a nice trip, but it was just too damn long.

It was basically about a small New England town (surprise, surprise) that winds up trapped under an enormous, transparent dome made of indeterminate material. The book isn't as much about the dome itself (and its origin and purpose) as it is about the people trapped underneath it.

Great. A story about the human condition, the will to survive under adverse circumstances, blah, blah, blah...

I can dig it. But after 650 pages, I really couldn't give a damn about those people under the dome, and started thinking about other shit like:

"I wonder what cats think about."

"Whatever happened to Colonel Abrams?"

"Will Boy George ever make music again?"

"Will J.K. Rowling ever take us back to Hogwarts?"

Shit like that.

Not to say that this book didn't have its stellar moments. Without giving too much away, there's a moment when all HELL breaks loose, and I thought: FINALLY. Now things are getting interesting.

But that was like, almost at the end.

Now let's get one thing clear: I'm not intimidated by a long story. After all, I hiked through King's Dark Tower series, which was freakin' AMAZING (although the ending pissed me off, but that's another blog), and the Harry Potter series.

The key word here - series.

At least with Dark Tower and Potter, I got some breathing room in between. Free time for sex and laundry.

Not this endless, meandering voyage. Think Neverending Story minus the flying dog and sexually ambiguous children.

Because you see, when I read a book, I get involved. I get to know the characters, form alliances, root for them (or not), care about them (or not). Want to see them succeecd. Or become disfigured in a horrible boating accident.

It's a serious undertaking for me. But The Dome presented some problems for me.

Number one, there were too many characters. Granted, most of them were dead by the end of the book (spoiler alert), but it was just too hard trying to keep up with whoever was dying at the time...

Secondly, most of the characters just weren't likeable. Which, I suppose, could be a credit to King's character development. No one can sketch out a three dimensional psychopath better than him.

Or an asshole. And Dome was full of 'em.

One of the redeeming qualities of this book is that in typical King fashion, the bad guys get their comeuppance. And one particular bad guy (a dude named Jim Rennie - a man so repulsive and morally corrupt he made me shudder) gets exactly what he deserves. It was quite satisfying.

But after all was said and done, I can't say that I walked away from this book feeling fulfilled. I was just glad it was over.

Not like the end of Insomnia or Green Mile, which left me in tears, or The Stand, which left me paranoid and sleeping with the lights on.

Jus ready for something else.

Anything else.

Things I Saw On My Walk Today

An elderly couple walked slowly past the duck pond, talking softly in Russian. They weren’t holding hands, but I could’ve sworn they were.

A female duck swam around the lagoon, surrounded by five male ducks. She picked the prettiest one. The others swam away in disgust and thinly veiled embarrassment. I could practically see the word “bitch” in cartoon bubbles over their heads.

An old man walked an old dog. They looked alike. They both had aching joints and jowls. He’ll never be the same after he dies, I thought. Not sure who the subject was in that sentence. It probably doesn’t even matter.

An African couple stood huddled against the wind, trying to figure out their new digital camera. The wife discovered a new function, and the two stared open-mouthed at the tiny, fold-out screen. He gently placed his arm around her shoulder and pulled her close. She laid her head on his shoulder. The wind blew her braids around their heads.

Three young men of Middle Eastern origin walked an enormous Rottweiler. They took turns holding the leash.

A young woman sat on a concrete wall, taking pictures of the turbulent lake with her cell phone. Her phone rang. She ignored it.

A man and his son pulled a large fish from the dock. The son ran to show his mother. The father watched him run away and smiled.

A woman pushed a legless man in a wheelchair past the lake. He never looked up.

Three men in decorated leather jackets stood in front of the Veterans’ Memorial. A minute passed - they patted each other on the back, and walked towards the water. They spoke in volumes. They never said a word.

A toddler threw a ball at his older brother. It went backwards, over his head. He and his brother laughed. The sound brought the sun from behind a cloud.

A runner stopped suddenly, mid-stride, in front of a twisted, old Weeping Willow. The runner tilted his head, as if his name was called.

A man walked quickly across the street, trying to beat the light. He left his wife behind to fend for herself. She shook her head, either in resignation or disgust. I couldn’t tell.

A homeless man asked a young woman for change. She shrugged her shoulders. He blended into the brick wall.