Wednesday, April 16, 2014

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 die...in 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.

-alex

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