Back in June I received a facebook message that changed my life.  My friend from high school, Jessica Glazer, sent me the following:

“I have an idea I want to talk to you about.  I was thinking of having a party to raise money to contribute to your Lupus fundraising efforts.  It could be a platform to educate more people about the disease (I just found out my dad’s aunt has Lupus), and raise some money while we’re at it. My idea is to have a mock art gallery show (I have a large expanse of 15-foot white walls in my apartment) and I would ask people I know to show some of their photography.  To get more people involved, we could have friends showcase/contribute their talents, like my friend could bake some gourmet pastries, and my friend Paul’s improv troupe could do a mini show. You could also give a short talk on what Lupus is, and what you’re doing with the money raised.  We could also have people dress up and have wine and cupcakes.

Even though we don’t see each other too often, I want to support you in your efforts and let you know that I’m there for you.”

This message was one of the most concrete expressions of friendship I have ever experienced, and launched a summer of planning for our big event.  This process helped me to understand how Lupus has caused me to take note of the incredible people in my life.

Spring Fundraising

Before opening Jess’s message, I had spent much of the spring season fundraising in my mother’s memory.  My mom was diagnosed with Lupus when I was a year old, and passed away from the disease one year ago.  She had been an advocate for her condition, lobbying on Capitol Hill in 2008, and raising thousands of dollars to support the last walk she attended before she died.   As a way to remember her, I launched a fundraising campaign in her honor, using handwritten letters, social media, and local publicity to spread the word.  I set the rather ambitious goal of raising $3,000.00 for the first ever Lupus Alliance Suffolk County, Long Island NY Lupus Walk.  I did not, however, truly expect to achieve this target—given the bad economy and recent Haitian earthquake.  Nonetheless, I swallowed my suspicions and confidently told people I was determined to meet this number. 

 From the first day of fundraising I was overwhelmed by the response from my friends.  Within a few minutes of alerting Mary, Lauren, Kelly, and Amanda about the walk, each had posted a link to my fundraising page on their facebook profiles.  Donations began to come in from people I did not even know.  Amanda launched her own online fundraising page and raised over $600.00.  The list of donors on my fundraising webpage became a roster of people I had known throughout my life, including elementary school teachers, neighbors that had moved away, and friends I hadn’t seen in years.  May 2^nd finally arrived and we walked with over $6,000.00 raised in honor of my mother, Mary Geraghty.  I left feeling satisfied.  It seemed to be the perfect ending to my journey of raising awareness about Lupus.

Then I got Jess’s message.  It’s not every day that you receive a note saying: “You’re doing amazing work, and I want to help.  Here’s how…”  My mouth hung open as I read her words, and I knew that the next stage of my journey had begun.

Under the Surface

Jess’s idea was to host an evening of art and awareness for Lupus.  The goal was to bring attention to the disease in a fun and interesting way, thereby convincing a group of twentysomethings to spend their Saturday night with us talking about this cause.  She envisioned the event set up in a gallery style, with artwork exploring themes related to Lupus.  The art, however, would not be confined to the walls.  Jess also contacted her friend Paul that performs in an improv troupe in Manhattan and enlisted his group to perform at the event.  Our talented culinary friend Sarah agreed to prepare food, and we stocked up on wine and provisions to keep our crowd happy.  We set a date of August 21^st and began preparing for the big night.

We called the event “Under the Surface” to send a particular message about Lupus.  One of the most difficult aspects of explaining this disease to other people is the fact that it cannot be observed visually.  Many people note that my mother looked healthy right up to the day before her death.  I too saw a woman that appeared to be the picture of health.  However, the immune system does not leave external signs.  All the damage takes place silently—hidden under the surface.  We wanted this to be the biggest takeaway of the evening, so we emblazoned these words on the invitations, program, and across the walls.

Over forty people joined us for the event, and helped us to raise money which will be donated to support Lupus programs.  We started the evening with a general mingling session, where everyone walked around to look at the art and descriptions.  We had work ranging from photography, to canvas painting, to prints.  I was proud to exhibit work from two of my best friends, Kristy and Megan, who are both beginning their artistic careers in New York City.  Kristy’s canvas painting of two hands clasped together reflected the physicality of this disease, suggesting that beauty persists in the face of physical pain.  Megan’s prints explored the theme of control, addressing how Lupus patients attempt to exert influence over a force that inevitably continues to dominate them.  Jess’s photographs used overlying images to play with the concept of the surface and what lies beneath.  Similarly, Dan’s photographs of fraying tree bark pointed to the idea of time-wear, drawing attention to the meaning and stories that lie below.  Finally, Jai’s photographs of African-American women asked the viewer to consider how even the most simple activities turn into a complicated struggle with Lupus.  (Due to a limited number of spoons, so to speak).  After giving our guests a chance to examine these pieces, the night then progressed to a different form of art revolving around five extremely funny men.

The improv troupe Penny Hockey entertained us all with comedy they developed on the spot.  Until this event I had never appreciated the transformative effect that humor can have on a crowd.  From the moment the guys took the stage, I felt a tangible change in the room.  The audience bonded through their shared laughter, making everyone all the more receptive when I stepped forward to tell my mother’s story.  As I spoke, I looked out on a crowd of eager eyes, listening intently to the message I wished to send.  Did my mother ever think she would be the topic of conversation at a party of youngsters in Manhattan?  Probably not.

We raised $622.00 at this event.  That is the monetary value.  But even more important to me is the fact that we gave forty people a context in which to think about Lupus.  We helped them understand that this disease cannot be seen externally, and that appearances conceal the internal civil war taking place under the skin.  Our goal was to make these people familiar with Lupus, so that they think of the disease as something concrete rather than an abstract medical condition.  Given the smiles, praise, and money raised, I am confident that we reached that goal.

Let it be known.  The visionary for this event was Miss Jessica Glazer.  I would never have come up with such a concept by myself.  For me, this event was a huge wake-up call to the importance of enlisting other people in your passions and projects.   Jess watched me take action against Lupus during the spring.  Then she took a risk, pitched an idea, and pulled off a unique and distinct type of awareness event.  All of our friends, too, took a risk.  Contributing their art, money, and time, they helped us spread the word about this cause.  Fresh ideas enrich and renew, and allow us to reach our potential.  Jess—and her message—did that for me.

Lupus & Friendship

Is it possible to be grateful to Lupus?  Sometimes my mother used to say that in spite of the pain, this disease had brought a few good things to her.  Specifically, it made her appreciate the positive aspects of life.  When she felt well, she was consciously thankful for those moments.  The frailty of her health, and knowledge that it could tip at any moment, made her concentrate on what she did have, rather than on what she was lacking.

Lupus took my mother away, and will forever be a source of grief for me.   Yet at the same time, I do acknowledge one way in which it has been beneficial.  My efforts to bring attention to this disease, and ensure that my mother’s death was not in vain, revealed a great deal about the relationships I have built in my life.  The outpouring of support from my friends, and their willingness to help and build on my efforts, shocked me.  I never expected such a degree of dedication from so many people.  I am proud and thankful to call such people my friends.  They are a balm that eases the sense of loss that I continue to work through.  They make me feel loved, and fill in for my mother who is now just a memory.  Lupus has been the force that revealed to me these beautiful people that inhabit my world.  For that much, I am grateful to the disease.

Written by Rebecca Geraghty

Rebecca Geraghty is a recent graduate of New York University, and experienced Lupus firsthand through her mother’s illness and death in June of 2009.  Since then she has worked to raise awareness and money for this cause, lobbying in DC, fundraising, and sparking conversation about the disease. To read more about Rebecca and living the daughter of someone living with lupus, click here.