Imagine what it’s like to wake up every morning, knowing you’ll have just 10% of the energy you once had.
With your physical and emotional battery so low, it’s a challenge just to eat or brush your teeth.
You seldom leave the house. It’s almost impossible to work. You think often of your old, “regular” life, when you traveled, hung out with friends, and got up the next morning to do it all again.
Caroline Riddle Ranere doesn’t imagine that. It’s the reality of her life.
And it has been for 17 years.
It’s a far cry from her Staples High School years. Back then the 1993 graduate played violin in the orchestra, performed with the Academy of Dance, and took Saturday classes at the Manhattan School of Music.
Caroline Riddle dancing as the mother in “The Nutcracker,” 1991.
She headed to Furman University. After graduation, she moved to San Francisco. She’s now in Baltimore.
But for nearly 2 decades, she’s suffered from ME/CFS. Myalgic encephalomyelitis/ chronic fatigue syndrome is characterized by extreme fatigue. It worsens with activity, and does not improve with rest.
Caroline is mostly homebound. “My iPad is my world,” she says.
But lately, that same device has given her an outlet. More of a life. And hope.
Caroline’s symptoms began around 2006 — the year she was married.
Caroline and her husband, just before the onset of ME/CFS.
At first she did not feel well. She had trouble working as an interior designer. and going to the gym.
She pushed through her honeymoon, but soon had her first “crash” — post-exertional malaise, it’s called.
“You’re getting older,” doctors told her.
“I was in my 30s!” Caroline says.
Unable to offer a diagnosis, doctors sent her to a mental health therapist. Even family and friends did not understand what she was going through.
Caroline spent 10 “pretty dark” years. In 2010 she retired from a work project. “I was devastated to let down a client. But I just didn’t have it in me,” she recalls.
Caroline Ranere’s work, as an interior designer.
Finally, in 2015, she was diagnosed with ME/CFS.
She was lucky. Living not far from Stanford University, she entered its clinic.
At last, “everything I said was understood. No one looked at me like I was a head case. It was the best appointment I’d ever had.”
The cause of the disease is unclear. One theory, Caroline says, is that she never recovered from previously undiagnosed Epstein-Barr virus, or mononucleosis.
What is known is that if ME/CFS is not diagnosed early, a patient is unaware of the “crashes” that can occur — and that over-exertion can cause them.
A crash can lower the baseline of functioning for several days, weeks, even months. That leads to more severe symptoms, a prolonged recovery, even an irreversible decline in health.
Caroline would rest all week before a dinner with friends. She would then over-exert herself, causing a downward spiral of even more fatigue.
ME/CFS is called an “invisible illness,” because sufferers often look “normal.”
At least 3.3 million Americans have ME/CFS. Caroline suspects the number is far greater, because long COVID is believed to be a new form of the disease.
When Caroline got the coronavirus, she was prescribed Paxlovid. For the first time in 17 years, she felt “like a normal person.”
But the feeling did not last. It was just a tantalizing taste of her life before ME/CFS.
Caroline Ranere’s self-portrait.
Three years ago, during a particularly bleak period, Caroline picked up her iPad, and drew.
She liked what she created. Finally, she had something positive to share on social media.
She could draw for hours, without zapping her energy. At times, in fact, she felt better after drawing.
She drew almost every day. Then, she realized, she could sell her work online.
And those designs could be printed and sold on a variety of products.
Six months ago, she started a website. Superficial Love is filled with Caroline’s work: prints (acrylic, canvas, metal, silk and wood); tapestries and wall hangings; backpacks, bags and jewelry; keychains; iPhone cases and laptop sleeves; t-shirts, sweatshirts, hoodies, dresses, pants and footwear; pillows, candles, and more.
One of Caroline Ranere’s art prints …
But Caroline’s website is more than just an outlet for her brand.
It’s a testament to what she can accomplish, despite suffering from a debilitating disease.
“Behind every post is a struggle, a victory against odds you might not fully comprehend,” she writes.
“Each day, I balance sharing my creativity with conserving energy just to make it through. When I’m silent online, it’s not a lack of interest in your lives; it’s a battle for my own.”
Though she yearns for the days of active friendships, her website has become a way to connect with others. She draws sustenance — if not energy — from hearing other people’s stories, and knowing that both her products and her story inspire them.
If Caroline has one message, it’s this: “Those of us with ME/CFS are not lazy, useless, weak or mentally unstable. But when no one understands our struggle, we lose our identity. Whatever we’ve achieved just fades away.
“It takes effort to find happiness and purpose. But we can find it.”
She is fortunate to have found something that gives her life meaning — despite the need to constantly rest, save her energy, realize her limitations, and balance what she wants to do with what she can do.
… and 3 pillows.
She feels fortunate too that her husband, his family, and her longtime Westport friend Leah Nash have supported her strongly.
Her hometown holds a special place in Caroline’s heart. She has few memories of the past 17 years, because she has been homebound and spent so little time with others.
The people she grew up with here “know who I was, and what I did,” she says.
Meanwhile, while she waits for a cure, she vows to live a life “with purpose and fulfillment.”
Superficial Love proves to Caroline — every exciting, yet exhausting, day — that she is doing exactly that.
(To learn more about Superficial Love, click here. For Caroline Ranere’s Instagram, click here.)
(“06880” covers the interesting and inspiring lives of many Staples High School graduates. Please click here to support our hyper-local work. Thank you!)
