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99 Problems

The daily struggles of urban living as a quadriplegic explained one by one. It's so much more than not being able to find a parking space.

99 Problems — #5 I once offended a woman with Lupus.

LupusWhen my best friend committed to starting her non-profit, a creative reading and writing endeavor dedicated to inner city kids, she also committed us to attending as many charity events as possible. Kind of like of method acting, we threw ourselves into the Orlando philanthropic endeavor circle in order to learn the process of raising money and creating brand awareness. We attended fundraising Happy Hours and dressy Galas. We sat in on local board meetings and attended every public event to familiarize ourselves with Orlando’s leaders. We researched other charities, and compared our goals to their realities. And finally when it came time to launch her philanthropic endeavor–even if I do say so myself–we actually appeared to know what we were doing. People listened. And the charity took Orlando’s streets with great success. Now, five years later, Page 15 has served over 850 students and continues to grow and thrive with each new school year.

There was this one time during our charity tutorial, however, that I made the ultimate philanthropic faux pas. It started when former Miami Dolphin football player Nick Buoniconti, who manages his brothers spinal cord injury endeavor The Buoniconti Foundation, invited us to a happy hour for a Lupus fundraiser. Without hesitation Julia and I agreed because we wanted to get in good with Nick (he has a very high reputation for donations and philanthropic endeavors), but also, and like I mentioned before, we were curious to see how different charities raised funds. So we showed up to Rhythm & Flow, a bar we would never go to otherwise, and paid our $10 to get in the door. Besides the door monies, we were told, a portion of the alcohol drink purchases were also supposed to go towards the Lupus charity ‘TO FIND THE CURE.’ So Julia and I quickly bellied up to the bar and each bought ourselves a vodka cocktail. Yes we wanted to do our part for Lupus but also we needed some social lubrication to deal with people in attendance, which appeared to be mostly middle-aged divorce attorneys.

It was early still. So Julia and I explored every inch of the small bar, searching for free apps, Lupus Literature and other people like, well, us. The tour proved to be unsuccessful. Including a bathroom break and a mirror check, the bar tour only killed ten minutes. This clearly was one of the more casual events, and that was okay with us. Because seeing what we didn’t want to do was still part of the learning experience.

By our third vodka we were sitting in a circle of strangers chatting away about Julia’s upcoming project and foundation, when I felt a tap, tap, tap on my knee. The bar had filled since our first vodka, and now there was a decent amount of people standing all around us. I looked down to my knee to see what or who was down there, and squatting next to my wheelchair was a younger woman with freckles and brown curly hair. She signaled me to her. So I leaned in.

“Hi,” I said, cheerfully. “Do you need to get through or something?” I’m used to people tapping me to move my wheelchair.

“No,” she replied. And then she paused for a long time, tilted her head, and stared into my eyes in an endearing way, almost like she was my mother. I was ready to sit back up, look away and break the awkwardness that was started to work its way around us, when she finally spoke up.

“I just want to say that I’m so glad you’re here. You’re much braver than me. I have Lupus too.”

“What!” I yelled back like the immature twenty-something I was, with vodka dribbling from my chin and all. “I don’t have Lupus! I’m just paralyzed.”

Upon hearing my god-awful response the girls face immediately flattened and she disappeared back into the crowd as quickly as she had appeared before me. I hoped–no prayed–no one else heard our conversation but the scuffle was enough to make Julia turn to me and inquire about the situation.

“Oh my god. What did you say?” she asked.

“I told her no I don’t have lupus… but it wasn’t pretty.”

“What? Why? What do you mean it wasn’t pretty? What did you say?”

“Well I cringed my face like she had some contagious disease, without even meaning too. And then I said, ‘I’m just paralyzed,’ like my disability is so much more respected than hers. I feel like an ass. I don’t even know that much about Lupus. Do Lupus people need wheelchairs?”

Julia couldn’t say much. She was too busy laughing at me.

“Should I go find her and apologize? God, I feel like such a dick. Here I was trying to support people with Lupus and now I’m pretty sure I just insulted one terribly.”

Eventually, Julia collected herself.

“I don’t know girl. I don’t know the ethics on this one. I mean, she shouldn’t have assumed you had Lupus. So you shouldn’t feel bad… but… um…”

“I know! I know! I was just caught off guard. And I’m three vodkas in. I mean, Lupus? Really? Jesus.”

“Why don’t we go to the bathroom and then get out of here,” she suggested.

Right then I made a pact with myself that if I saw the girl with Lupus in route to the bathroom or on the way out the door, I would apologize for my outrageous behavior. Unfortunately I never had the opportunity. The woman with Lupus had vanished. So instead I went home and googled Lupus and spent some time reading and researching about the disease. I wanted to know why that girl felt so proud of me, and what her daily grind was like. Surely her disability was just as difficult as mine, if not worse. I felt sad for her. And then felt sadder for myself because it occurred to me this is how some people probably feel about me.

The next morning I told Julia, “No more Lupus Happy Hours.”

Like a best friend would, she agreed.

To learn more about Julia’s initiative Page 15 visit  page15.org.
To learn more about Lupus (like I had to) visit lupus.org.

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There’s plenty more problems to go around. I promise.
99 Problems #1 Attack of the Flying Pens
99 Problems #2 My Kitty Has Super Powers
99 Problems #3 Los Angeles Sidewalks Are Cracked Out
99 Problems #4 Strangers Touch Me
99 Problems #5 I Once Offended a Woman With Lupus.
99 Problems #6 I Hate Parking Garage Ticket Dispensers

One Response to “99 Problems — #5 I once offended a woman with Lupus.”

  1. kathy kiely says:

    hi jana — very well written. a good insight for those of us without visible disabilities that disabled people aren’t one big club that all identify with each other. and another lesson of which i often remind myself: everyone has a battle or a demon they are fighting, no matter how they look, so try to be kind. it’s a hard thing to learn. especially if you’ve had three vodkas. 😉

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