Lupus affects every aspect of my life. Yet, I rarely think about having the disease. The changes in diet, exercise, sleep, activity and exertion that I had to make 13 years ago have been so deeply integrated into my life that I have a hard time remembering what it was like before lupus. Every once in a while, God throws in a reminder. The latest came in the form of my Princeton University 20th Reunions.
I missed my 15th Reunion five years ago. I was in the middle of purchasing my home, and decided to sit it out. Even though I could have made sure to schedule the home inspection (and re-inspection) around Saturday’s main event, I honestly didn’t want to go that year. I was only in year two of my transformation journey, and at that point in my life, there were more things with which I was disappointed than content.
I had been eager to attend my 10th Reunion back in 2006. I had recently received my divorce papers, and made the decision to leave Philadelphia and teaching. I was excited about my future, even though it still wasn’t clear to me what it would be. I was thinking about going back into nonprofit fundraising, which could be afford a decent living in the right settings, and had even thought about working for an education tech company. For the first time in my professional career, I was ready to use all the knowledge, talents and connections I had to further myself without worrying about the needs of others. I was ready to put myself first for once.
I got that ed tech job, and spent three years based in Brooklyn. I traveled the country working with teachers and leaders in low-income schools. I made enough money to start paying back my student loans and eliminating debt. I was in a good space for those three years, and then I decided to move to DC. It was a rough transition, and my career stalled. By the time my 15th rolled around two years after my arrival in DC, I couldn’t imagine even one afternoon of making small talk, especially since it would inevitably lead to what I was doing professionally.
Fast forward five years to the present, and I was ready and eager to return for Reunions. My five-year-long transformation journey had ended, and I had created a life that I loved. I stuck with DC, and came to love my adopted hometown. I also pursued my twin dreams of becoming a yoga instructor and opening a neighborhood studio. I was working as an education consultant once again, and enjoyed the impact I was having on the field in that role. I had a great group of friends with whom I could all of life's ups and downs. More than anything, I was feeling content, joyful and at ease with the world and myself.
Last week, I pulled out the orange and black clothing from my closet along with my new orange, patent leather Mephisto sandals. I had my hair styled in the salon, and a mani-pedi in complimentary shades of orange. I gassed up my MINI, and headed to New Jersey for my 20th. I was prepared for everything--except the weather.
Somehow, I missed that we would have three straight days of heat and humidity with air quality alerts. The sun, especially on humid days, is not good for lupus. My doctors have been ordered me to wear lightweight clothing, hats and long sleeves whenever I am in the sun. They recommend that I avoid the heat of the day. When I go to the beach, I can hang until about noon, and then I have to wait until 5 or 6 in the evening to go back outside—after the hottest part of the day has passed.
It was pretty hard to follow my doctors’ orders during Reunions. Most events take place outdoors in the heat of the day—from all our class meals to the three-and-a-half hour P-rade of classes that takes place on Saturday afternoon. I went to my eating club both Friday and Saturday afternoons to rest. Unfortunately, the 1888 building did not have central air conditioning, so it wasn’t particularly cool. The dorm room where I stayed also didn’t have air, so I wasn’t even cool at night.
I did my best to struggle through the heat. I lasted until about 1pm on Saturday, when I realized I needed to get cool. While my classmates were preparing to walk down Elm Drive in their 80s gear, I spent some time in the university art museum and Panera Bread trying to cool off. Eventually, by the time I made it to the Association of Black Princeton Alumni Annual Awards Reception and Meeting, I was done physically. I had spent too much time in the heat and humidity in the late morning and early afternoon. My body had gotten overheated and fatigued. A friend offered to let me stay in her air-conditioned hotel room that night, but I knew I couldn’t take any more outdoor activities. I needed to get cool and stay there for a while. I was going to miss the fireworks display and my friends’ a cappella group performance, but there wasn’t much I could do about it.
In hindsight, I wish I had made the decision to skip all the afternoon activities. If I had spent the majority of Saturday afternoon resting in air conditioning, from about noon until 5pm, I might have been able to go out about 6pm and enjoy dinner with my classmates and the rest of the evening festivities. That’s my usual vacation schedule. Whether I am in the Dominican Republic, Jamaica or Hawaii, I spend as much time on the beach as possible before lunch, and then take an afternoon siesta. By dinnertime, the temps have cooled, and I can enjoy my evening.
I am disappointed that my Reunions weekend was cut short. Since we had such a cool and wet May, I really wasn’t expecting the heat and humidity that settled over Central New Jersey this weekend. I knew it would be in the 80s, but I didn’t realize just how uncomfortable it would be. I hadn’t mentally prepared myself to activate my summer afternoon siestas.
Fortunately, I am grateful for a wonderful weekend of seeing my classmates, meeting lots of new people, and making the connections that remind me how blessed I was to attend such a great institution. I was especially grateful for the quiet times I spent outside my dorm room over the weekend, listening to the birds chirp and feeling the cool breezes in the shade. Reunions weekend wasn’t a complete failure. It was just a reminder of how much my life has been impacted by lupus—and the importance of remembering to focus on living well no matter the circumstances.
Crystal Moore began her wellness quest in 2003 after being diagnosed with lupus. Her quest has led her to embrace yoga, faith, exercise, healthy eating, and relationships. Share her journey.