This I Believe

Carla - Somerset, New Jersey
Entered on November 21, 2007
Age Group: 30 - 50

I always considered myself the family humorist. For instance, my grandmother was considered a little “difficult,” but I never had much trouble with her, because I learned how to make her laugh. She never criticized me or hounded me about getting married, the way she did her other grandchildren. I’ve heard that people are less likely to give you a hard time if you can make them laugh.

But when I was diagnosed with systemic lupus at age 25, I lost my sense of humor. Lupus is a funny word for a very un-funny disease. It’s a chronic inflammatory autoimmune disease that causes the immune system to attack the body’s own cells and organs. If left untreated, it gets worse with time. I developed anemia, kidney failure, pleurisy, joint and muscle pain, migraines, hair loss, weight loss, high-grade fevers, digestive disorders, menstrual disorders and neuropathy.

After having lupus for 10 years, I had a stroke. I lost the use of my left hand for a year, during which I could not play guitar. I was in the hospital after that, with kidney failure and other lupus-related complications, feeling anxious, depressed, and in chronic pain. I knew they were going to put me on high doses of prednisone again. I hate prednisone, but there aren’t a lot of choices for folks with lupus. There hasn’t been a new FDA approved medicine for lupus in more than 40 years. Doctors have to use chemotherapy, malaria drugs and other things they can “borrow” from other diseases. I was not laughing.

Then my sweet, bubbly friend Saralyn called me, joking about stuff like maxi-pads. We started writing a song about it over the phone. I wrote it on a napkin (no pun intended) and worked on it for hours, forgetting about my illness.

I started taking my song idea notebook to all my doctor appointments, and suddenly the two-hour waits no longer bothered me. In fact, I wrote a song about them. I felt like myself again, using humor to distract and defend myself, as well as to provide perspective. I could pull away from the situation and laugh about humiliating things, like collecting all my urine in a big jug, having feet so swollen that my only shoes were huge puffy Snoopy slippers, losing so much weight I had no rear end, horrible side effects from harsh medications, and outrageously poor treatment in the indigent ward. I had haplessly stumbled into a deep well of comedic material!

Being able to laugh about my life with lupus is a lot like making my grandmother laugh. It doesn’t change the situation, but it changes my relationship to it; it dispels the fear and anger that come with chronic illness, and provides some perspective.

Until there is more research for lupus, my case of lupus is likely never to “heal itself” anymore than a difficult relative is likely to awake one day with a different personality.

But, if one day I should be lupus-free, I will still have the lesson that laughter can heal the soul.