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!)
Amazing work art from her heart. Thanks for sharing.👩🏼🎤❤️
Thank you Dorothy and Happy New Year!
Caroline: I completely empathize having had my world turned upside down by ME/CFS 16 years ago and am writing this, on my iPad mini, stretched out on a recliner where I spend significant portions of my day. Fortunately, my situation has not been quite as severe as yours and I had very understanding doctors who recognized from the outset that something physical—not mental—had gone haywire in my system (as I was an active athlete in my mid-50s when all hell broke loose).
It’s interesting that Paxlovid enabled you to feel “like a normal person” for a period of time. While there’s been an ebb and flow to my energy levels over the years—with seemingly no reason for some temporary improvements—I have never had even one day of feeling or getting back to normal.
Maybe it will turn out that there is something in the makeup of Paxlovid that will be part of a cure.
In any case, like you I have learned to try to focus on what I can do and enjoy within my limitations. Ironically, the pandemic has limited me even more as, due to my compromised immune system and based on the advice of my infectious diseases specialist, I have curtailed various activities in the outside world.
The only upside I suppose from the pandemic is that, with more people experiencing ME/CFS from long COVID, it seems more money and effort are being put into research to finding a cure.
Wishing you lots of success with your new venture.
Thank you Fred for sharing.
Focusing on abilities and finding new ways to enjoy life is so important. How crushing to have been an athlete. It’s important for awareness the understanding that ME/cfs can strike very healthy and active people.
My journey has mostly been one long decline with little ebbs and flows. So it was surreal when after a few days on Paxlovid I felt ‘normal,’ all while still having COVID symptoms. It being an ‘anti-viral,’ my layman’s theory simply connects its effect on the most likely cause of my ME, the Epstein Barr virus. Many others have also had the same experience, and while the ‘normal’ feeling was short lived, it certainly was impactful.
Wishing you a happy and peaceful new year.
Thank you Caroline for allowing your story to be told and to Dan for doing the important work of publicizing this highly complex condition. I too deal with ME/CFS, and though it is a comparatively moderate case, it has nevertheless substantially restricted my life and defined its contours. Few have heard of it, whether they are medical professionals or lay people. There are no obvious, visual cues. When I am having a flare I spend all or most of the day at home. Because of this, people who know me do not see the extreme fatigue and brain fog I am often experiencing. I may have a few good hours in the day where I can engage in life in an almost normal way, though the remainder the day is often spent horizontal, sometimes too tired to even read. I too am hopeful that the research generated by the interest in Long Covid will yield results that will benefit all of us who are in the grip of ME/CFS.
Thank you Linda for sharing.
I still remember how crushing even ‘Mild’ ME/cfs was, and ‘moderate’ was completely devastating. My heart goes out to you, it’s a true daily struggle, plus when friends and family don’t understand they can unintentionally do more harm than good.
2024 might just be the turning point for us all 🤞
All my best to you ✨
I so appreciate this article because it shares some of the wonder of my daughter in law. She is a treasure and so important to us. Her talent is creative talent is boundless. She is one of the dearest, kindest people I know.
😢Love You💖✨
Thanks, Dan, for sharing this story. : ) Caroline and I have known each other since she and her family moved to Westport in 1984 (40 years now?!?), and I feel so lucky to have reconnected with her. My son also suffers from CFS, and Caroline has given me such good advice on how to best help him. Caroline is an inspiration for anyone suffering with invisible illnesses. Much love and best wishes for your new business! <3
Our days as flower children finding magic all around us!
Learning the news of your son = I had to do more. So I’m trying in my own way focusing on the individuals and the families/communities around them. One step at a time. 💖✨
I am so very proud of Caroline and all she’s managed to accomplish while struggling with severe ME. Her strength and positivity along with a constant care for others is truly inspiring. Her talents are many, but her greatest gift is her full heart and humanity. Thank you for sharing her story.
❤️
I appreciate learning Caroline’s story and witnessing the love and support from dearest Westporters like Fred Cantor and Leah Nash.
One of my best friends since high school wrote a startling book about his years long struggle with ME/CFS. When I am with him I want to see him fully light up but in reality we just don’t see his dancer/writer/teacher personae on brilliant display. Here is the link to Martin Keogh’s book of poetic reflections on ME/CFS in case a raw emotional connection and insight to your loved ones will help you too.
https://www.amazon.com/Naked-Realities-Invisible-Chronic-Illness/dp/1989930042
Writing this makes me sad and glad to know there is support and awareness for Caroline’s pursuits.
Alex, thank you for sharing!
Supportive friends matter greatly.
I will certainly be checking out Martin’s book of ‘poetic reflections.’
Happy New Year
Caroline your work is so beautiful ! I struggled with ME/CFS for 15 years. My daughter also was extremely ill for six years. We also had a DR. from Stanford.( long story) My daughter spent two summers there doing research on her disease.
We have both recovered with various drugs, in particular anti virals. We started a support group and have helped many people world wide. We learned to make jewelry and through our sales donated more than 30,000 dollars to Stanford to a fund in my daughters name to help CFS patients. We are both nurses and my husband is a physician which helped.
If anyone would like to reach out feel free to email.
Nancy, I’m so happy for you and your daughter!
My time at the Stanford clinic was unfortunately negatively affected by what went down and since moving back to the East coast, I haven’t been able to make it back.
Are you and your daughter still making Jewelry? I’m planning on adding a charity component to my new shop as soon as it is feasible. One of my thoughts is a scholarship program for the study of ME/cfs. I’d be interested in your thoughts or recommendations.
Thank you Nancy for sharing and I’ll be looking forward to learning more about your support group.
My best to you and your family, Happy New Year.
Caroline are you able to speak by phone? My email is nancyanderson87@gmail.com.
Caroline
Please google ‘Will Integrators’ for contact information for someone who has your exact problem caused by mono in 1993 and then bad, chronic Lyme Disease after that.
There is a road to recovery- a very long one. She has helped to pave it through 26 years of bio research and is working on the final leg of it developed by biochemical research last fall.
She can give you the whole story. You should at least know that there is a road if you want to try it.
Congratulations on finding your life anyway!!
This person found working with PTSD rescued animals in her neighborhood and on line as far away as Israel.
Good luck in life and keep going!! You and all of your fellow survivors will be helping the Covid survivors and other autoimmune crash victims of the future!!