eight years.

My life changed forever 8 years ago today, on Monday, April 25th at approximately 9:45 in the morning, I was diagnosed with systemic lupus erythematosus (SLE). That day ranks up there with the day the world met Ashanti last episode of Ghostwriter aired on my list of Most Fucking Terriblest Days Ever list. I am thankful to be here to help you be a little less fucking terrible at this thing called life.

Almost a decade removed from that day, I can now see ALL of the positivity that came of my dealings with lupus and can fully appreciate the person I have become as a result. I am thankful that I had my mother (who's dealt with lupus since she was a teenager) beside me through this time. I am thankful for Tiffany and Jessica and CK (despite.....) and Lee and Saphira and Sade and Mensa and Santana and whoever else surrounded me while I was in a coma and made me laugh upon waking up. I'm thankful that I'm able to sit here right now and drink this delicious coffee that I don't need with french vanilla creamer and be ashy with morning breath and morning wood and alive to tell you all about it. I am thankful for the best father on this earth. I am also thankful for his wonderful insurance which reduced a $275,000 medical bill to a mere $250.

Look at this terrible-looking person here. Here I am, at 20, two months after the coma, at a family reunion.  With a cane. With carpal tunnel. And a steroid-plumped face. With a teenager's acne. Undersexed and underweight. With swollen legs. Without control over my bowels. Looking terrible and sickly and horrible and terrible. Good fucking times, bro.
Surviving lupus taught me a million things. I learned to be my own loudest advocate. I learned that it is okay to refuse treatment and question prescriptions. After being on eight different medications, each with its own gift basket of side effects, I learned to do my own research. And that it's okay to tell doctors, "NO, MISTER DOCTOR WHITE MAN SIR, I AM NOT GOING TO TAKE LAMISIL BECAUSE THAT SHIT KILLS PEOPLE, BRO." And some days, specifically while taking prednisone (a life-ruining, pain-reducing steroid), had to chose between not medicating and hating my life and medicating and hating my life. You know, real problems.

I learned what real pain is. I learned what being gang banged by psychosis and paranoia feels like. I learned what it means to have the whole world right before you yesterday and have a nurse wipe shit from your ass cheeks today. To be a young, hungry dancer this month and wheelchair-bound the next. I learned that only severely fucked up people are bathed and dressed by their parents at age 20. I also learned that fear is bullshit. It taught me that, unfortunately, Life doesn't wait for you to recover from one blow before handing you the next. Life doesn't give a fuck about your comfort zone or what your plans were before said tragedy.

I say all that to say that almost dying taught me how to live. Worrying about bills and boys and whatever trivial issue seems pretty stupid when in the not-so-distant past I faced decisions like:

Should I leave the house and risk shitting on myself in the store today? 
Walker or cane today?
Go out in public and deal with the stares or stay in the house and hate my life?

...and so on.

Melodramatic, but you get the point. 

me, today.
Largely due to this ordeal, I don't have a fear of failure. It's why I can free ball on the regular because that's what real thugs do move to Los Angeles and Panama sight unseen with a loose plan and make shit work in my own way. Especially when the alternative is staying in my current situation, bemoaning a missed opportunity half a decade later due to fear of the unknown like a few miserable people I know. It's why I HATE seeing people complain day after day, month after month online about their crap ass lives yet do nothing about it. Why willingly carry that burden on your spirit? Who'll die if you make a drastic life change that surprises or disappoints your well-intentioned friends or family? Not. One. Single. Person. You know who dies if you never, ever take that (or any) chance? You, motherfucker. You do. Inside, motherfucker. Trust me, I've seen it.

I've now lost the original point I intended to make, but you get the idea. Today is a personal holiday. I will indulge in every high calorie treat that strikes my motherfucking fancy. This frigid ass New Orleans morning, I'm celebrating life and whoever discovered that alligator sausage should be a fucking thing. 

May your day be at least as good as mine will be. 

Toodles.


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Comments

  1. I'm a lupus patient. Currently, I'm going through an 11 months (and counting) recovery from my latest lupus flare. And it's going terrible! The pain, the fatigue, the weakness. And I have so many plans, so many things I want to do with my life, I feel trapped and I wish I could escape this stupid body (ugh!). Anyway, I'm not telling you anything that you aren't familiar with already. It's just strangely heartwarming to randomly find someone that can relate to all this..
    Umm. Yea, that is all.
    Nice blog.

    ReplyDelete
    Replies
    1. God bless you both. I'm inspired and humbled. I wish I could tap into something in me that moves me like your writing does. Keep doing what you are doing because it makes a positive difference.
      Oh.... And beyonce's the shit

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