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Chronic Pain

How Imaginary Light Soothes My Chronic Pain

I was skeptical that guided imagery could help my rheumatoid arthritis. I'm pleased to say I was wrong.

I thought I misheard the instructions.

Visualize a white light entering the crown of the head and gently flowing down the spine. Let it settle where you feel tension or pain.

As I reclined on my yoga mat, confused, I wondered when we would get to the stretching and poses that would help the inflammation move away from my tender joints.

Instead of exercising, I’m painting pictures of wispy clouds with my imagination and trying to get them to permeate my body? Come, on! I need relief!

I took a long inhale and tried to make this work. The teacher must know what’s she’s talking about. Give this a chance, I told myself.

Give this a chance, I told myself.

So, I questioned everything. What does a spine look like? How do I get light to settle into my joints? Is anyone else actually doing this? What should I make for lunch? This is silly.

Breathe. Focus. You can do this, Angie.

I like a challenge and stuck with it. After all, this class is called therapeutic yoga and geared at folks like me, so here I am, surrounded by friends with rheumatoid arthritis, Crohn’s Disease and other autoimmune conditions.

The instructor, a certified yoga teacher and physical therapist, spoke with soothing confidence that kept me on track.

Light. Joints. Pain. Got it.

I kept visualizing and eventually changed my internal story from clouds to sun rays. They could somehow penetrate better and were ample for the harvesting from the glowing orb that took over my mental vision.

Feel the warmth of the light. As you inhale, bring it all in. Let the light flow through your body.

As the minutes ticked away, this weird-to-me exercise (known as guided visual meditation or guided imagery) started to play out like a movie, or maybe a dream. I simply noticed the images and observed.

Light. Joints. Pain. Got it.

Swirls of white light inhales coiled around my vertebra and came to a slow, floating halt around my hip bones, which looked like parts from a Halloween skeleton decoration in my mind’s eye.

Hmmm. I’ve got this.

My next inhale was robust and audible. I paused at the top to let the sunrays work their magic, then sighed long out my mouth. As the air exited, my body sunk deeper into the yoga mat, allowing my muscles to relax. Tension melted away.

I listened to the verbal cues and then as quick as it started, we were instructed to wiggle our fingers and toes to wake up the body.

What just happened? I didn’t have time to think and instinctively followed the next instruction, which involved getting on our hands and knees, in a table-top pose. The instructor’s voice began to fade as my attention moved to my physical body.

My hip pain was… almost gone. My wrists weren’t aching. What was happening?

My hip pain was… almost gone. My wrists weren’t aching. What was happening?

The Arthritis Foundation says guided imagery is a “scientifically validated way to relieve pain, stress, anxiety and depression.” The power of your thoughts indeed influences your physical health.

I know that visualization works, and now it’s a regular part of my yoga practice. This experience also planted a seed for a new habit — off my yoga mat.

When my body is physically uncomfortable or I feel overwhelmed with the tasks of the day, I take a few moments and visualize my body being bathed in white light from those sun rays.

I change my internal story from words of frustration and anxiety to hope and healing. I tell myself I’ll feel better.

You hear the old phrase “mind over matter”, and for me, it works. It takes time to trust the process, but once you can quiet your mind and conjure up images of healing, the brain somehow forgets to send out pain signals.

A little imagination and an ounce of curiosity is all it takes to give it a go for yourself.

Advice

Ask Ada: Where’s My Chronic Illness Crystal Ball?

How can you fit the demands of chronic illness into a busy schedule? Also: what are some good books to read your kids about disability?

Welcome to Ask Ada, Folks’ bi-weekly advice column for people impacted by health issues or disability. Want Ada to help you with a problem? Email Ada at askada@pillpack.com or tag @folksstories on Twitter with the #askada hashtag.

How Can I Fit Chronic Illness Into My Schedule?

Dear Ada,

I’m no stranger to chronic health conditions that require daily maintenance and attention. Over the years I’ve devised a work schedule with equal parts rest and productivity that truly works for me. On the well-managed days, I meet my goals with a smile and feel content with life. Then come the curve balls. Do you have any suggestions for handling the unpredictable nature of chronic illness? For example, on Christmas morning rheumatoid arthritis joint pain left my hands weak and limp, erythema multiforme (EM) lesions erupted in my mouth causing pain when eating or talking and a healthy dose of fatigue topped it all off, just hours before hosting a holiday lunch. Maybe I just need a crystal ball?

~ Melancholy in the Midwest

Dear Melancholy,

I wish that I could give you a crystal ball. Short of that, though, all anyone can do to manage the unpredictable nature of chronic illness is this: focus on being proactive, and manage your stress.

Because you’ve adapted a work schedule that fits around your health conditions, my guess is you’re familiar with my first suggestion. Being proactive with every possible task in your life gives you the freedom to take downtime when unexpected symptoms and side effects derail your days. This means kicking to the curb any “Why do today what can be put off till tomorrow” instincts you might have, and developing habits that allow you to address everything immediately, so nothing is lingering in your mind or holding you back from resting as much as possible if pain or illness suddenly strikes. Carpe diem, in other words.

There’s another reason it’s important to get things off your plate as soon as you can: long to-do lists stress us out, and according to the National Center for Health Research (NCHR) says that stress actually increases the likelihood of becoming ill. So when you’re chronically ill and you’re behind on what needs to be done, there’s a knock-on effect: you get stressed out, which makes it more likely that you’ll get sick, falling further behind, which will just stress you out more, and so on. 

Which brings us to stress management. There’s no one-size-fits-all approach to calming yourself down when stressed out: exercise, meditation, yoga, sleep, hanging out with friends, journaling, swimming, painting, Netflix-and-chilling are all equally valid methods of calming yourself when stress creeps in. The important thing is to find what works for you, and then make sure to find time for it every day… even (or perhaps especially) when you feel like you’re falling behind what you need to do in other areas of your life, or coming on stressful times, like holidays. Remember: self-care is the most important responsibility any of us have, because from it, everything else follows.

There’s no such thing as crystal balls, and none of us can see the future. All we can do is do our best to take care of ourselves in the here-and-now.

Photo by Matthew Henry from Burst

What Books Should I Read My Kids So They Can Understand Disability?

Dear Ada,

I love to read and I want to instill that same love in my children. However, I can’t seem to find any good books that showcase a wide range of children from different ethnicities to abilities. My niece is reliant on a wheelchair and my nephew has autism and ADHD. I’d love to find kids books with characters of different abilities so my children can see characters similar to their family members on the pages. The books don’t have to be about health issues or disability per say, but I’d love to have my children read those too. Any ideas?

~ Mom Loves To Read

Hello Mom,

Congratulations on being so intentional in your parenting! Reading is just so important for children, not just so they can see and identify with characters like themselves, but also so they can be exposed to the vast and beautiful spectrum of human diversity. Here are four books I’d particularly recommend as a jumping-off point, because they feature characters similar to your niece and nephew.

In both it’s Hard to be a Verb and My Mouth is a Volcano, written by Julia Cook and illustrated by Carrie Hartman, the main character, Louis, has ADHD. Because of that, he often can’t control his impulses very well, helping kids gain a more empathetic understanding of what kids living with ADHD are going through. 

Hello Goodbye Dog, written by Maria Gianferrari and illustrated by Patrice Barton, is a great book featuring a young girl in a wheelchair, which focuses less on her abilities, than on her dog, who can’t seem to stay away from her while she’s at school. It’s a lovely introduction not just to what life is like for kids with mobility-impairments, but also introduces the concept of service animals to young readers.

Since We’re Friends, written by Celeste Shally and illustrated David Harrington, gives neurotypical children a chance to understand their peers with autism. A surprising number of children’s books with autistic characters focus on those character’s efforts to be “normal.” What’s great about Since We’re Friends is that it flips the script, showing ways in which a neurotypical kid adjusts his behavior to make his autistic friend more comfortable. 

Looking for more? There’s no shortage of suggestions online for children’s books talking about chronic illness or disability. The important thing is to keep reading to your kids, since it’s been proven to improve empathy skills and emotional intelligence. Keep exposing your children to lots of good books, and I promise you, they’ll grow up to be inclusive humans.


Are you facing a problem that is being complicated by a health condition or disability? Folks’ advice columnist Erin Ollila wants to help. Email askada@pillpack.com and tell us your problem.

Chronic Illness Chronic Pain Rare Diseases

How Chronic Illness Slowed Me Down For The Better

Maybe being happy is more important than how productive you are.

I’ve worked hard my whole life. I’m the kind of person who can’t even fathom taking a break until the day’s work is done… and when it is, I’m still looking for another project to better myself. No one had ever accused me of being lazy before.

Yet the moment I got sick—as soon as I needed a break and have people take care of me for a change–it seemed like everyone came out of the woodwork to insinuate that the real problem was my laziness.

Too Busy To Slow Down

I was first diagnosed with rheumatoid arthritis at 26, after a busy holiday season in which I’d planned an office party for 200 people and published my first book. As my company’s sole event planner, digital marketer, receptionist-slash-office manager, and community action coordinator, it was my job to make sure everyone else was happy, even at my own expense.

Despite enjoying the work and gaining valuable experience, it was often more stressful than the construction management job I’d just left, and the initiatives I’d worked so hard on did little to boost employee morale. I wasn’t in a position to create real change despite expectations and it left me discouraged, but I needed this job. I had rent to pay, and I’d found so many flaws with my previous jobs that my resume had lost focus.

I was exhausted, and I thought that was normal. My boyfriend suggested I see a doctor, but I brushed it off: I didn’t have time to see a doctor.

An Unexpected Diagnosis

But it was inefficiency that eventually caused me to cave. Trying to wrap a small pile of Christmas presents, I could barely do it because of a recurring pain in my hand. For two weeks I brushed it off, letting the pain grow until I kept dropping things, and even grabbing an object the wrong way had me shouting in agony. So, I used some personal time at work, convinced I was wasting it, and went to the doctor.

I’ll never forget the pained look on my doctor’s face as we ran through my symptoms.

I’ll never forget the pained look on my doctor’s face as we ran through my symptoms. He discovered swelling in areas I hadn’t even had pain in yet. A week later, after a day of feeling like I had shards of glass in my wrists making it impossible to even hold a door open for someone, I got the call: my bloodwork showed that I most likely had rheumatoid arthritis.

I knew what rheumatoid arthritis was. I suffered from Raynaud’s Phenomenon as a teenager, when it was explained to me that with my family’s history of lupus, rheumatoid arthritis might be a further risk. I knew the disease for causing debilitation, reducing lifespans, and forcing early retirement. Meanwhile, I defined myself by keeping busy. What did this mean for my career, my home life, and my dreams to travel, which I hadn’t even started? Because of my pursuit of a stable career, I had barely left my home state of Massachusetts.

No Sympathy From Work

Within months of my initial diagnosis, I’d spent thousands of dollars and used up nearly all of my personal time. While my manager and HR knew vague details about what I was going through, I fielded jokes from others who did not. “Taking a half day to play hookey?” staff joked, not knowing how many vials of blood I was about to get drawn, or the way dozens of miles of driving fatigued me. Comments were made when I stopped washing other employees’ dishes because I now had problems holding glasses. Multitasking left me winded, and people raised their eyebrows when I spent less time glued to my desk and more time stretching. Was I imagining dirty looks because I took so many half-days? I wasn’t. Coverage for my job became a serious issue, in part because there wasn’t even a plan in place for when I took a routine vacation. I snapped when someone told me that my absence was truly felt. What about what I felt?

Was I imagining dirty looks because I took so many half-days? I wasn’t.

The solution seemed to be to transfer to another department so I could work from home. However, I continued working both the new and the old position for months, giving both my all. Despite doctor’s orders not to overexert, I still did work that landed me on my couch for days afterwards. When it was suggested that I not be paid for helping my company pull off an event I endured physical pain to produce, it confirmed what I already knew: a corporate job like mine wasn’t going to work for me anymore.

Finding Support Online

A pretty young woman smiling into the camera with her dark hair parted down the middle.

Ashley Dufault.

I desperately needed relationships with people who understood that I wasn’t lazy, so during this time, I grew close to the rheumatoid arthritis community on Twitter. There, I met people like me who had had to adapt because of rheumatoid arthritis by leaving their careers, working part-time, becoming freelancers: each was someone, like me, who had been whipped into a vortex by rheumatoid arthritis, and had been forced to question their values. One woman admitted to me that she’d downsized her house and sold her business to create a lifestyle she could be happier with.

“And the fatigue? It never really goes away,” one Twitter poster told me bluntly.

I fought hard against my fate. I tried aromatherapy, exercise, long walks: anything that might help keep my symptoms at bay, and give me my old momentum back. But nothing worked, and on my long evening walks, I would mourn the me that used to be, and all the problems in my personal and professional life that rheumatoid arthritis had caused.

Then, one day, I didn’t care as much. My values shifted.

Being Happy Is More Important Than Productivity

Maybe it wasn’t so important to constantly be achieving. Maybe what was important was to accept yourself and live the life you’ve been given to the fullest. Maybe being busy is less important than being happy. And maybe I don’t owe the people who think I’m being ‘lazy’ because I’m chronically ill a damn thing.

Maybe I don’t owe the people who think I’m being ‘lazy’ because I’m chronically ill a damn thing.

Rheumatoid arthritis forced me to put the brakes on “efficiency” and slow down long enough to chase my dreams, not just my next task. So instead of continuing to work a job that was pushing me to my limits, I decided to believe in myself and pursue one of my dreams: my own writing and editing business. I now have clients who appreciate what I do, and I’ve even finished the first draft of my second book.

Most exciting of all? The woman who was too busy to leave New England is finally going to follow her dreams and do some travel. I have a vacation scheduled to visit a different region of the U.S. this year. It’ll be my first time on a plane, and next year I hope to visit my first foreign country.

Creative Commons photo by Jerald Jackson.

Chronic Illness Chronic Pain

My Son Gave Me A Kidney. He Has Been Chronically Ill Ever Since.

I'll probably never know if he got sick because he donated an organ to me, but after years of soul-searching, I'm determined not to let his kidney go to waste.

On May 15th, 2007, my 22-year-old son, Dylan, saved my life.

He donated a kidney to me.

It wasn’t my first kidney transplant. In 1993, over the span of three days, my renal function plummeted to 3 percent, leaving me in dire need of a new kidney. After what seemed like endless tests, I was diagnosed with ERSD, End Stage Renal Disease. But after surviving 5 years on hemodialysis, then spending 8 wonderful years with my first transplanted kidney, I became gravely ill again. For some unknown reason, my body rejected my anti-rejection medications I’d been taking for so long. By the time my symptoms appeared, it was too late to save my kidney.

My youngest son, Dylan, sat beside me on my hospital bed. At 6’3”, he was like a giant as he wrapped his arms around my frail body, enveloping me in hope and love. “Mom, I want to test to be your donor,” he said.

Doctors assured us he would be fine living with one kidney. After much discussion, the tests were administered, and he was a perfect match. On May 15th, 2007, Dylan and I were wheeled, side by side, on gurneys down the long, lackluster hospital hallways to our individual operating rooms.

And just like that, my life became mine again, thanks to my son’s gift.

It’s been 11 years since my son gave me his kidney and I remain healthy, living a normal and happy life. But I can’t say the same for my son.

It’s been 11 years since my son gave me his kidney and I remain healthy, living a normal and happy life. But I can’t say the same for my son.

Weeks after surgery, he began experiencing excruciating joint inflammation leaving him unable to walk or care for himself. He was initially diagnosed with gout. His rheumatologist prescribed several medications, but the results were abysmal.

He has since been diagnosed with fibromyalgia, rheumatoid arthritis, and chronic fatigue syndrome. Additionally, due to the intense pain and crippling flares these conditions present, he quickly became addicted to his pain medications, presenting another challenge to overcome.

His chronic pain left him broken in spirit,  and a prisoner in his home. Since he could no longer work or party, his friends disappeared.

I couldn’t help but wonder if this was due to him donating a kidney to me.

There are no definitive answers for us as to whether organ donation caused his illnesses or made his body more susceptible to them. Studies indicate some donors may be more prone to developing ESRD than others but even those results are not conclusive. Lainie Friedman Ross, a physician and professor of bioethics at the University of Chicago says: “The consequences of organ donation might not be apparent for decades — and the risks are not the same for everyone. Young or minority donors have a higher rate of kidney failure than the general population.”

So maybe the sudden onset of his illnesses were brought on by kidney donation, or maybe it was all a coincidence. As Dylan’s mother, though, I couldn’t help but feel guilty either way.

I felt heartbroken watching my son, the person who saved my life, walking around my home barefoot with a cane. He was unable to wear shoes or slippers due to the inflammation in his feet. It was ironic, because thanks to him I could walk and hike for miles again… just not with him, as I longed to do.

So maybe the sudden onset of his illnesses were brought on by kidney donation, or maybe it was all a coincidence. As Dylan’s mother, though, I couldn’t help but feel guilty either way.

As my son suffered, my guilt grew, because the reality was I was feeling better than I had in a long time. So I temporarily moved in with him, helping with every aspect of his daily routine: going to the bathroom, getting himself into his shower chair, helping him dress, get in and out of bed, and so on..

Mary McLaurine and her son, Dylan, who donated a kidney to her 11 years ago.

As a mother, and the person for whom he had (perhaps) sacrificed his health for, all I wanted was to help Dylan get better. But nothing worked entirely, and even when it did work, the side effects added new wrinkles to his suffering. For example, ome steroidal medications helped with his inflammation and pain, but led to sudden mood swings, uncomfortable boating, and persistent nausea.

He knew I blamed myself for his debilitating illnesses, and the guilt was eating me alive. I did my best not to burden him with my self-blame, but it was impossible for him not to notice, at least a little, the tears that would sometimes fill my eyes as I saw him suffer.

How could I not blame myself?

One quiet morning, when he finally noticed my tears, we sat down and talked. He let me off the hook. He told me he never regretted his decision and would do it again tomorrow. But what he said next was profound.

“Mom, I gave you this kidney because I love you, you gave me life, brought me into this world and I wanted to give you that same gift back. We may never know if the transplant is the reason for my chronic illness, but we do know it has given you a new and wonderful life. And that life will be ruined if you keep carrying this guilt with you, because the doctors have told you that stress can injure your already compromised immune system. Don’t let my kidney go to waste. The best thing you can do to help me get well is allowing me to witness you living your life to the fullest! Joy is good for my soul, and yours.”

“We may never know if the transplant is the reason for my chronic illness, but we do know it has given you a new and wonderful life… Don’t let my kidney go to waste.”

I realized he was right. From that moment on, I tried to focus on my gratitude, not my guilt. Some days were still hard, and  I could feel the guilt rise in my throat like a poison trying to escape, but then I would try to recenter myself, remembering that regardless of whether or not giving me his kidney had caused his health woes, I still couldn’t let it go to waste.

And as my attitude changed, it had a positive impact on my son too. We were now linked, he and I, by the kidney that he had given me. In a way, we both shared a body, and as my guilt went into remission, Dylan began responding positively to new medications. His activity levels spiked, and he was able to get off opioids. His arthritic flares have calmed, and we are optimistic things will continue to get better. Changing to a healthier diet, and routinely exercising has allowed him to get out and do routine shopping, outdoor activities, and even socialize with friends.

Watching Dylan’s health spring back has helped further alleviate some of the guilt pangs that surface in me from time to time. And every year, on May 15th, my son and I celebrate our lives, his monumental decision to donate life to me and my unwavering appreciation and gratitude for his generosity and love. We don’t look back anymore. We move ever forward.

He is my hero.

Creative Common photo by Helen Taylor.

Chronic Pain

Catching Big Air at the Olympics

After being diagnosed with Rheumatoid Arthritis three weeks before the 2014 Winter Olympics in Sochi, snowboarder Spencer O’Brien is ready for her Olympic do-over.

Spencer O’Brien wants an Olympic do-over. When the then 26-year old Vancouver-resident finished 12th in the women’s snowboard slopestyle at the 2014 Sochi Games, she was devastated. She cried and, as a medal favorite, felt like she let Canada down.

But it was a miracle that O’Brien even suited up to compete in Russia. What most people didn’t know was she was diagnosed with Rheumatoid Arthritis in late November 2013, just three months before the Olympics.

Her mysterious symptoms surfaced in the fall of 2012, right before the start of Olympic qualification year. They began with mild aches and pains, mostly in her knees and shoulders. She assumed that the pain and swollen, stiff joints were a byproduct of age and the wear-and-tear of her sport’s high-impact demands. She planned to take the spring and summer off to have wrist surgery and focus on getting healthy for the Olympics. But she couldn’t shake the discomfort.

O’Brien struggled to figure out what was happening to her body. Her tests came back negative. Doctors thought she had bursitis in her shoulder and gave her cortisone shots to treat the joint pain. “I went through a solid year of strange joint injuries and pain,” she says. “We assumed all the injuries were unrelated. But I knew in my heart that I was sick.” Eventually, she couldn’t get out of bed in the morning or walk down the stairs without bracing herself against the wall and railing, gingerly placing her feet one at a time on each step.

“I went through a solid year of strange joint injuries and pain,” she says. “We assumed all the injuries were unrelated. But I knew in my heart that I was sick.”

She was frustrated. “As an athlete, we work in timelines when it comes to injuries. If you break a bone or tear a ligament, it’s a set amount of time until you are back doing what you love. With these injuries, there was no timeline. Even though I was so dedicated to my rehab and doing everything that was asked of me, my health was getting worse,” she says. “It felt like I was being punished for something. I couldn’t understand what I was doing wrong, why I was in so much pain, and why I wasn’t getting better.”

Aspen, CO – January 29, 2016 – Buttermilk Mountain: Spencer O’Brien competing in Women’s Snowboard SlopeStyle Final during X Games Aspen 2016 (Photo by Peter Morning / ESPN Images)

A Rising Star

O’Brien grew up in the mountains of British Columbia. At the age of three, she learned to ski and took up snowboarding when she was 11, following in her older sister’s footsteps. She fell in love with slopestyle, where athletes ride down a course and perform tricks off of obstacles like jumps and rails. “I feel like I can express myself and my riding when I’m on a slopestyle course. I love the creativity of it,” she says. O’Brien set her sights on snowboarding professionally and competing in the X Games and at 17, she turned pro.

As the 2014 Olympics approached, O’Brien was riding high. She won medals in slopestyle at the Winter X Games in 2008, 2009, 2012 and 2013. She won gold 2013 at the first FIS World Championship.

“I feel like I can express myself and my riding when I’m on a slopestyle course. I love the creativity of it.”

But then, her body betrayed her and she was forced to stay off the snow for seven months. “To be in that position three months from the Olympic Games—it was heartbreaking because there was no way I could see myself being there doing something I loved to the best of my abilities,” she says.

Finally, A Diagnosis

In November 2013, doctors told O’Brien she had rheumatoid arthritis (RA), an autoimmune disorder where the immune system attacks the lining that surrounds the joints. The inflammation can cause painful swelling, stiff joints and fatigue. Ultimately, it can lead to erosion of the bone and cartilage—not exactly the ideal conditions for a world-class athlete.

Plus, at 25, O’Brien wasn’t the typical RA patient. While RA is more common in women, symptoms typically begin between the ages of 30 and 60, according to the Arthritis Foundation.

Still, her diagnosis was a relief. Finally, the snowboarder had an answer. The first day on medication, O’Brien says she felt normal again. “There was a light at the end of this super long, dark tunnel. Once you have that, the whole world opens up again,” she says.

She had a short window to get ready for the Sochi Games. However, she had to ease back into snowboarding slowly. She was also diagnosed with severe anemia, making a return to altitude tricky. On O’Brien’s first day back on the mountain, she did one run. The next day, she did two runs.

After a week or two, her symptoms returned. “That was a really frightening day because you find this relief and all of a sudden it’s gone,” she says. Doctors prescribed different medication to help her compete in Sochi, where she continued to struggle with pain and find the right treatment for her.

There was a light at the end of this super long, dark tunnel. Once you have that, the whole world opens up again

The Road Back

O’Brien doesn’t feel limited by her disease and believes that her experience has made her stronger as an athlete and a person. She also doesn’t let her condition stop her from competing at the highest levels of her sport.

“It changes your life to be diagnosed with a disease that deteriorates your body. The first thing I thought was, ‘How am I going to ever do my sport again?’” she says. “But you’re still capable of doing whatever you want. You work hard, advocate for your health and push for the way you want to live.”

After the 2014 Olympics, O’Brien and her doctors continue to search for the right medication to handle her symptoms. In all, it took about a year and a half of trial and error. Despite dealing with on-going pain, she went on to win a bronze medal at the 2014 X Games and the gold medal at the 2016 X Games, her sixth career X Games medal.

Now, she’s back at the top of her game and is hungry to have the Olympic experience of her dreams in Pyeongchang as part of Team Canada. In addition to her medication and work on the mountain, she focuses on strength training and mobility. She also does her best to stick to a diet low in inflammatory foods.

“It’s nice to feel my age and not like I’m 80,” she says. “It’s a true gift to go to the Games again in a healthy and happy place. I feel like I’ve been given another shot and I want to take everything I learned from my experience last time and channel it into not only performing my best, but also enjoying the experience.”

Top photo by Peter Morning.

Chronic Pain

Renoir’s Radiant Brush

The impressionist painter completed nearly 400 paintings after rheumatoid arthritis deformed his hands.

The impressionist painter completed nearly 400 paintings after rheumatoid arthritis deformed his hands

In Pierre-Auguste Renoir’s painting, “The Bathers” (“Les Baigneuses”), two young women lounge in the foreground. They are round and relaxed, all rosy curves and pink flesh on a bed of grass and blossoms. Flushed red with health, their lips and cheeks, are redolent of vigorous activity despite their reclining postures. The piece is vibrant and sensual, filled with bright strokes of purple, yellow, green, and blue. Henri Matisse proclaimed it a masterpiece, stating it was “one of the most beautiful pictures ever painted.”

Renoir worked on the piece from 1918 to 1919, the year of his death at age 78. At the time, his own body sat in bony contrast to his canvas’ supple subjects. For the previous 25 years, the influential artist and founding member of the Impressionist movement had been suffering the progressively debilitating effects of rheumatoid arthritis, an autoimmune disorder that causes a person’s immune system to mistakenly attack his or her own body’s tissues. Over the course of the disease, the synovial tissue lining the joints thickens, which leads to painful swelling. If the inflammation goes unchecked, bone erosion and joint deformity occur. By the time Renoir completed “The Bathers,” rheumatoid arthritis had reduced his hands to tight fists, like knobby wounds left on a pruned tree trunk. He hadn’t walked in about seven years, and his frail frame weighed no more than 100 pounds. In the face of these physical afflictions, the prodigious painter continued to work. He created more than 400 pieces after the disease had deformed his fingers, adding to a lifetime total of around 4,000 paintings.

 

Just as his doctors recommended, Renoir went for walks (first with one cane, and then with two), but as a painter, he knew it was his hands that he needed to keep agile. He began juggling wooden sticks for ten minutes every day before heading to his studio. He and his wife Aline started playing billiards because he believed the game helped keep him flexible by encouraging him to bend into unusual postures. And he practiced bilboquet, a tricky French game, similar to cup-and-ball, which involves using the pointed end of a wooden stick to catch a ball with a hole in it.

Despite his hopes and efforts, in 1903, the disorder turned aggressive — eventually misshaping his hands, feet, and legs. His thumbs began to bend toward his palms and his fingers curled toward his wrists. By 1912, he could no longer walk. But as the disease advanced, he adapted. “The more intolerable his suffering became, the more Renoir painted,” recalled Jean in his memoir Renoir, My Father. When gnarled hands kept him from gripping his palette, he had it fixed to the arm of his wheelchair. When he couldn’t pick up his brushes, he had someone (often his youngest son, Claude or a model) wedge it between his index finger and his middle finger.

No longer able to stand and with limited range of motion in his shoulders, Renoir could only paint within a one-foot-by-one-foot area for the last several years of his life. He devised a custom-made easel, or “moving canvas,” which allowed him to continue working on large paintings. The system involved to two cylinders, one near the ground and one seven feet above, linked together by his old bicycle chain. By turning a crank on the bottom cylinder, his assistants could scroll the canvas in either direction. “The Bathers,” which measures around five feet by three and a half feet, was painted this way.

His physical deterioration made him a slower, but no less precise, painter. Once, when an art dealer was watching him paint with his clenched fists, he remarked, “You see, you don’t even need a hand for painting!” A silent film clip from 1915 by Sacha Guitry captures just how active Renoir was in front of a canvas — even when his fingers were all but paralyzed. His eyes, which he once described as “cow eyes,” sparkle even in black and white. With Claude at his side, he takes a drag off his ever-present cigarette, and then trades his son the cigarette for his brush. He leans in and the paintbrush dances across the canvas. Then he pulls back, squints at his work, and dives back in before pausing to chat with the filmmaker.

 

In a letter to his friend and art dealer, Ambroise Vollard, Renoir described his physical pain as “unbearable, especially at night,” and said he painted to “forget my sufferings.” Warm weather seemed to provide some relief, and in Renoir’s last decade, the family moved to an estate in Cagnes-sur-Mer along France’s southeastern coast. Here, Renoir’s days began and ended in agony, but he found joy painting under the Mediterranean sun. Jean recalled his father’s time spent outside in front of the easel: “He smiled and winked, as he called us to witness this conspiracy which had just been arranged between the grass, the olive trees, the model, and himself,” recalled Jean. “After a minute or two, he would start humming. And a day of happiness would begin for Renoir, a day as wonderful as the one that preceded it, and the one which was to follow.”

Henri Matisse, who visited the aged master several times at the estate, observed “as his body dwindled, the soul in him seemed to grow stronger continually and express itself with more radiant ease.” On one of his visits, he asked Renoir, why he continued to paint in his arthritic condition. “The pain passes, Matisse,” he replied, “but the beauty remains.”