May of 2009 I created a team “The Lucky Thirteens” for the New York City lupus walk. This was the first time I can recall feeling ownership over this disease. I spoke openly about it, wanted people to understand what having lupus entailed, and wanted to bring awareness to a disease that is not well known but so many suffer from.
For so long I did not want to be associated with this word. It felt like a dirty word that could so easily define me. It was a label that I feared would define me.
Events shape our perception and through experience we learn. What I had learned from being open with people about having lupus was that I would be judged.
“Oh, I know someone who died from that.”
“You don’t look sick.”
“This woman I know can’t even get out of bed anymore.”
“Wow…so are you going to have kids?”
I don’t think that anyone meant malice by their words, but these were the conversations that shut me down. I began to fear that I would be unlovable or that I should not put someone in the position to be with a “sick” person, or a person who could possibly one day be unable to get out of bed. I developed irrational fears such as, if my job finds out maybe they wont want to keep me.
Confronting my fears head on were the initial steps that I took to be able to accept that lupus is a part of me, but it is not me. The Lupus Walk was a chance for me to rally support for something that is important to me. I was so afraid of putting myself out there, but I needed to.
At the time I was in college and I was broke. My friends were broke. How could I ask for money? I began a campaign for cans and I called it “Drinking for a Reason.” Classy. I know. The support I received was overwhelming. People were going out of their way to make sure that I got their cans. Messages over facebook, texts, calls, friends by association. People wanted to help. It was amazing, minus living in fear that the can collectors of downtown Albany would identify the ring I had going on and hunt me down for blood. They had a serious operation going on.
With the help of friends who dedicated hours, mini vans, and their time I was able to collect $250 in money just from cans. Think about that. $250 is five-thousand-cans. After writing that out I now realize I probably should have gotten tetanus shots.
I then decided that wasn’t enough. I spread the message and I began to advocate for my team. Sometimes you just have to ask people for help, and you would be surprised by how much people want to support your cause. As a team we were able to raise over $3000 dollars. We were a top team in the lupus walk that year. Most important to me were the people who came out and showed their support. Friends that came from Albany to Manhattan just to walk next to me, friends who I had not seen in years were there as well, I walked with my mom, my brother, a bulldog, and people that I can never thank enough.
So for the first time in my life I feel like I can say I have lupus. Pobody’s nerfect.