Nine Years Alive: On Beating Lupus

While you likely spent the Age of Twenty fucking and forging your own way in this R. Kelly-loving world, I spent most of Twenty trying not to addition to forging. And fighting. Not much fucking that year.

Next week, I will celebrate nine years of living, thriving, learning, falling, and growing since my lupus diagnosis. Almost a decade removed from that day in April 2005, I have amassed a metric fucktonne of revelations, realizations, and reasons to rejoice that I lived long enough to watch Michelle take a tumble on 106 and Porch. Life is truly beautiful.

Each year, as April 25 approaches, I get increasingly emotional and usually reflect on all the good, horrendous, and transformative that came from that experience.

2005: The Year of Looking Terrible
That year, 2005, specifically the second half of it, was jam-damn-packed with learning. Growth. Tears. I learned that it was alright to be my own loudest advocate when dealing with doctors. I learned that psychosis is real. I learned that chemotherapy, while effective in my case, is the most savage thing that I hope to ever experience, including that time I stumbled upon a Mary J Blige live a capella.

The horror.

That year, similar to my arrival in Panama, I learned 100 things each day about myself, the boundless love of my family, and the importance of LIVING. After being discharged, after later being diagnosed with carpal tunnel syndrome, I had weeks upon weeks of solo time to sit alone with my thoughts. Well, my thoughts and the orgy of side effects of coreg, hydralazine, cytoxan and prednisone.

Greatest hits:

  • Night sweats (worst. thing. ever.)
  • a monstrous appetite AND decrease of bladder and bowel control
  • raging acne
  • moonface (prednisone)
  • depression
  • major weight loss
  • hair loss (chemo)
  • nausea
  • delusion and paranoia (prednisone)

...and many more!

What a fabulous time it was:

While trapped in the house, I would have friends bring me Taco Bell late at night. We would eat somberly and pretend like everything, despite my new disabilities and disfigured appearance, was normal. It was humiliating.

My monstrous appetite meant I could eat a bisonly man's portion of food and would be painfully hungry an hour later. Despite consuming more than twice my normal intake, I continued to lose weight daily. It was maddening.

After being granted permission to drive, because I had seemed to misplace my beloved bladder control,  I had to either carry a plastic urinal with me or remain within sight of a bathroom at all times. When I realized I needed to piss, it was most likely already too late to escape the situation with my dignity unscathed. Once, I felt that familiar, frightening bladder pressure while pulling up to 7-Eleven, I almost crashed into a gas pump while trying to simultaneously park the car, reach for my plastic pisser and unbuckle my pants. Most of the piss went into my lap and down my leg while I struggled to prop myself up and to the side, seething and crying, in the driver's seat. And: I was wearing khakis, en route to visit some friends. That day, I wished for a swift and painless death. It was mortifying.
lost hair and hospital bracelets

At a friend's college graduation shindig, where homies and classmates I'd grown up with and known since middle school gathered to celebrate, my walker and I made our social debut. I had graduated three years prior and hadn't seen many of these folks since we walked across that commencement stage and down our respective paths. I looked terrible. I saw the poorly hidden wide-eyed gasp from the girl I met back in Mr. Hawkins' US Government class. That clank when I lifted and placed my walker inside the door's threshold and refused a helping hand to step into the house? Painful. Chatter ceased for an eternity as curious glances volleyed to and fro. I inched from the front door to the living room sofa a few feet away, where I remained seated for the duration of the event. I sipped sparingly, convinced that overindulging meant I would urinate on myself in front of everyone and melt in a puddle of piss and despair. They all smiled, wished me well, and offered to fix plates and drinks for me. "So, I heard you almost died?" a guy from our track team said. It was humbling.

My first time out with my best friends post-coma was to dinner at Uno's Chicago Grill, the same chain I worked in when I fell ill months prior. There at the table, amidst the awkward silence and forced chuckles, in that fog of uncertainty and politeness, I realized along with everyone else that I was now drowning in my clothes. (A friend would later burst into tears, while laughing, when telling me I looked like a little boy that day.) By then I was the smallest I had been as an adult--down to a paltry 155 pounds from my normal, brawny 175--and covered with acne. Now, with a cane at my side. Plus, due to the life-ruining and life-saving steroid prednisone, my face was round and misshaped. There was a moment when I checked out while peering at the bones jutting from my arms. I had never paid attention to these sharp alien elbows and the newly visible distinction between meat and bone in my forearms. I looked up and met my friend Lee's eyes for half a second as he studied the same pointy bones and sharp knuckles. Sadness from him. Shame from me. I looked away, wanting to implode. It was depressing.

And so on. Short version: I finished chemo. These dancer's legs made weak by weeks of inactivity were strengthened again by physical therapy and lots of falling and standing. Bruises healed. Prescriptions finished. Lives were demolished and rebuilt, better than ever.

I survived.

Catching a whiff of death does wonders for the soul.


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  1. I've started a sentence and deleted it several times in an attempt to express what I felt reading this. There is so much going through my mind so I'll just say this. Your life, your journey, YOU are inspiring to me. We've never been close (for what I believe are obvious reasons) but I feel closer to you and that side of the family as I read your daily exploits via FB and marvel at your amazing ability to make me giggle to myself with some of the wild things you say. Having a blossoming relationship with my Dad now helps too. Anyway, I wish you continued success and progress in your health, your career, and your relationships. :)


  2. IF you had any question as to what the "obvious reason(s)" is/was...of course it is not having had a relationship with my Father for most of my life. <3

  3. Wow Alex! I had no idea you went through all this. When my wife and had the pleasure of meeting you in Panama you looked like picture of good health and no signs of illness. You are truly blessed my brother and I only wish the best for you! This is a very inspiratinal article and makes one appreciate life more. Thanks for sharing your experience. You an inspiration for many to follow!


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