Thursday, May 12, 2016

I shared my story with Mashable.com for World Lupus Day

My lifesaving journal, locs lost from chemo, and hospital bracelets

This week, to commemorate World Lupus Day, I spoke to SaVonne Anderson, a writer in the Social Good section over at Mashable, about my experience with lupus. I shared a bit about some of the hardest parts of living with lupus, my diagnosis, and a little about treatment.

This past April 25 makes 11 years since the day I was diagnosed at 20. Each year since then, I tend to get increasingly emotional, pensive, and newly grateful as the date approaches. As I get further from that wild ass time, I know that the saga is no less important in my life, but it is noticeably less vivid. Much of those first days and weeks are murky, as I spent about two weeks in in a coma shortly after being diagnosed, which was big fun. But I do know that the whole ordeal left me with both a powerful gratitude for my life, my mobility, my sanity, and my family and friends.

After I awoke from the coma, I spent the summer progressing from a wheelchair, to a walker, to a cane, meeting with a physical therapist for a while to regain my balance and leg strength. I dealt with side effects from a handful of "necessary" medications. I completed eight months of chemotherapy. It was all fucking terrible. BUT I can't imagine who I would be had I not faced this stuff. I don't know that I would have this fiery curiosity, or this insatiable hunger to do, learn, and contribute more. After bouncing back, everything became urgent. Dreams were no longer deferred. Priorities, alliances, and friendships shifted and vanished. There was no time for meandering through life on the path to nowhere. "I might not have five years!" I'd say often.

I moved to New York the following year because I convinced myself that I "might not have five years" to scrape together the nerve to make the leap. That urgency has been both motivating and maddening: I sometimes have to remind myself that, no matter how much I try, I can't do, be, excel at, know, or have everything. It took me a while to be able to be inspired by this transformative experience rather than terrified into action by and chained to it. And while I do know that letting life happen to you is a sure way to invite regret and resentment, it took me a while to accept that life is not a race, and that balance amidst the ambition is an essential component for survival. Still working on being kind to and patient myself. Still learning to temper that self-imposed pressure to be faultless and infinitely capable. And to slow the hell down, breathe, and be okay with where I am and what I'm feeling. And that slowing the hell down or taking a step back when necessary does not equate to failure. Baby steps. Woosah

Anyhow, have a gander:
Lupus is not a fatal disease on its own, but the effects it has on one's body can be life-threatening.

"Lupus attacked my lungs, kidneys, heart, and brain," Hardy says. "I went from diagnosis to coma in two days, with no readily identifiable symptoms beyond flu-like ones."
 Have a gander: 8 facts you need to know about lupus and how you can help.

And I wrote about my lupus diagnosis two years ago: Nine years alive

Join me Friday, May 20 in New York City for Colored Boy and Friends, a conversation series and literary showcase for mental health awareness.


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