Doing something for the first time adds value to life with lupus

There are six white seashells covered in sand that have been washed ashore by Lake Pontchartrain onto Lincoln Beach in New Orleans. It took me nearly half an hour to reach the spot where they lay.

Because I was headstrong and ready for a post-flare adventure, I climbed the levee wall and a short chain-link fence, descended a wooden ladder, crossed two railroad tracks, and walked along the path bordered by pine and camphor trees before reaching the historic beach.

A ladder awaits visitors who climb the levee and chain-link fence to get to Lincoln Beach in New Orleans. (Photo by Candace J. Semien)

The Louisiana sun and shore welcomed 30 or so people who were already enjoying the hidden 17 acres.

Before I could venture out, my ever-looming health conscience tapped my shoulder and sputtered one risk and reason of caution after another: sun rays, dehydration, overexertion, distance to the hospital, limbs locking, energy needed to climb out and back to the car, being with strangers, not enough nutrition, and on and on. Despite taking what I believed were the essential summer precautions, these fears still confronted me.

Lupus has such an unsettling way of limiting life.

That’s a fact known by many people living with systemic lupus erythematosus, a chronic autoimmune disorder wherein the immune system attacks the body’s own healthy tissue.

Another fact we may realize years after diagnosis is that some limits are meant to be pushed.

I have to admit, my trip to the beach was a wild adventure, and I have no regrets. Wink.

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The power of doing something new

A tree-covered path leads to Lake Pontchartrain. (Photo by Candace J. Semien)

Once we find balance within our new abilities (not disabilities), our lives with lupus are altered for the better. After nearly a decade of being extremely ill, the only way I can find a balance within the restrictions of lupus, psoriatic arthritis, and Sjögren’s syndrome is by doing things for the first time.

These activities are simple, but they may require some courage. They could include finishing a puzzle with strangers at the library, walking a pebbled trail at the park, eating in a non-English-speaking restaurant, reading to older adults, or taking the stage at karaoke night.

In his song “For the First Time,” country singer Darius Rucker asks, “When was the last time you did something for the first time?” It’s one of those “get yourself together and dance” songs.

His soulful, smooth voice continues: “Yeah, let yourself go, follow that feeling/ Maybe something new is what you’re needing/ Like a real night, let your hair down, feel alive.”

Doing something for the first time — even if we’re managing a lupus flare — gives us an opportunity to feel alive.

Doing something new has become a part of my holistic wellness routine. It helps me to tolerate brutal days, disappointing test results, and new medications. And it reveals another way to survive.

Adding pieces to the puzzle

Lincoln Beach is a once-segregated, now-shuttered 17-acre sanctuary in New Orleans. (Photo by Candace J. Semien)

I’ve seen this in the lives of lupus “warriors” such as journalist Natasha S. Alford, singer-songwriter Muni Long, poet and singer Shanelle Gabriel, and lupus coach Lizeth Santamaria. (I use quotation marks around “warriors” because, like me, they may use other monikers and not proclaim war on lupus.) These women consistently do things for the first time while creating and presenting themselves fully in their work and not hiding their lupus diagnosis.

In fact, earlier this year, Alford released the audio version of her memoir, “American Negra,” and recently earned a master’s in public policy. In 2023, Long won a Grammy Award and was nominated for two others. In the past year, Gabriel has partnered with the biopharma company GSK, the Lupus Research Alliance, and the Vital Voices Festival. Santamaria has begun doctoral studies in mind-body medicine while building an online community for women with lupus and other chronic illnesses to help them embrace a holistic approach to healing.

All of them are honest about the unpredictable flares and medical crises lupus can cause. They share clear and genuine moments that reveal how they have limitations on some days and freedom on others.

On those days when we feel most free from lupus, we can engage fully in a new activity that can lead to healing moments. Much like the 1,500-piece puzzle that sits at my local library, each time we attach a new piece, the picture comes together a bit more. My first adventure to Lincoln Beach allowed for a series of life pieces to be marvelously placed, despite my limitations with lupus.

To me, this lupus life of mine is a picture of the faithfulness of God. Even as I — and you — live within the limits of this debilitating condition, there are still numerous unbelievable adventures awaiting, and even more worth celebrating.

Don’t let that last time be the last time you did something for the first time. I won’t.

Note: Lupus News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Lupus News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to lupus.