I Know What You Are Going To Do This Summer
Beach, mountains, Europe, the Caribbean, or grandma’s house. Each year, if we are fortunate, we are given the opportunity to vacation. There are so many in the lupus warriors who don’t always have the opportunity to take a vacation. Many cannot vacation because lupus leaves many of us without the financial means. COVID-19 has restricted our ability to travel and assemble in groups. If you are like me, traveling can exacerbate lupus. However, if I think of the many lupus researchers and lupus organizations working on behalf of the needs of lupus patients, I begin to realize that there are more ways than one to vacation.
For those of us old enough to remember, the Martin Luther King Jr. holiday was designed to remember Dr. King, but it was also designed as a day for people to act in service to others by volunteering. In the same sense, any day can be used to act in the service of others. I believe with good deeds come good rewards. That is why I hope to inspire you to volunteer for any cause, but especially for your fellow lupus warriors.
Using summer vacation to be an advocate
For many lupus warriors, there comes a time in which we must redefine our life. I know people with advanced degrees who left their profession for the sake of their health. To me, leaving a career does not mean completing disengaging. It simply means figuring out how to use your skills for the betterment of your own health. For example, I know 2 former practicing attorneys with lupus. Both have used their skills to help other lupus warriors. One has joined a collaborative group designed to think about lupus initiatives. The other started a support group. I know a former police officer and mother of a lupus warrior who started her own non-profit organization in his memory. One of the guys involved in my support group uses laser-cutting materials from his job to create coasters that we’ve given out to members of the legislature.
We are more than lupus to use a phrase used by several friends. The time comes, however, when we can use our skills to help other fellow warriors. Every August, our members of the U.S. Congress take a month off for vacation. Many of them hold town halls for constituents. Many of them hold in-office meetings on telephone conferences with constituents. Many participate in community events. I am sure these elected officials would rather take a real vacation, but one on one communication is the best way to truly act on behalf of constituents is to speak to the constituents.
Alternatives for lupus warriors
While you stay out of the sun this summer, take the time to check in on both your federal and state elected officials. Why not take advantage of the month of August and spend time with your elected officials? Tell your story. Speak your mind. Ask that they support increased funding for lupus research. Yes, it is not a glamorous opportunity, but your presence can influence. If you do not know how to find your federal or state representatives, there are plenty of search sites on the internet. Then contact your local or national lupus organization to find out more information from their advocacy about what issues are important. Find out if there is a specific topic that should be included in the conversation. The most important aspect of the meeting is to tell your story.
Lupus service projects and advocacy
My local lupus organization, the Georgia Chapter of the Lupus Foundation of America, used persistence to win over members of our state legislature. As the story goes, one of the chapter's staff members and the advocacy chair, consistently spoke with key members of our state legislature to raise awareness about lupus. In conjunction with these efforts, lupus advocates dawn the capitol building every year speaking to our legislators and sometimes given tokens of appreciation. A few years ago and 8 advocacy days later, the work of the staff and the work of our lupus warriors made a difference. In 2014, the state legislature passed a bill creating a lupus advisory council and solidifying our efforts into Georgia law. Three years later and after hard work from key figures in the lupus community, that advisory council began receiving annual state funding for the development of projects and research to further our lupus mission. Those initiatives continue to grow, but they would not exist had we not continued to use our voice.
Yes, taking on new tasks can be scary. Talking to a member of Congress can be short-lived and intimidating. Taking on a service project in lieu of going on a vacation can be discouraging but remember that you are working for your own benefit. So that we can raise awareness, advocate for better rights and ultimately find a cure. If you are afraid- don’t be. Civil rights leader and politician Fannie Lou Hamer once said, "When I dare to be powerful — to use my strength in the service of my vision — then it becomes less and less important whether I am afraid."
Did you have the Epstein-Barr virus (EBV) or Mononucleosis (mono) before learning about your lupus diagnosis?