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Bald Is Beautiful

In a society which equates health and attractiveness with hair, these three alopecia crusaders are proving that baldness can't stop anyone from living a happy life.

The summer after fistfuls of Rosie Quinn’s brown locks started falling out onto her princess pillowcase, she went to the park with her parents. Her mother, Paula Quinn, left Rosie’s pink Chicago Cubs baseball cap at home. It was a turning point.

When Rosie was first diagnosed with alopecia universalis—an autoimmune disease in which the immune system attacks hair follicles—at age 3, Paula and her husband, Larry, scrambled to find a cure. They wanted to bring her hair back. They read medical journals, scoured the Internet for a solution, tried creams, steroids, herbal medicines and special diets. In their Chicago home, Paula scrutinized Rosie’s scalp daily with her iPhone flashlight for signs that a hair was starting to push through; it never did.

One day early on, Rosie, now 7, came up to Paula. “Mommy, don’t worry, it’s just hair, it’s just falling out,” she said. “And I said, ‘you’re right,’” Paula said.

“Mommy, don’t worry, it’s just hair, it’s just falling out,” she said. “And I said, ‘you’re right.”

Soon after, Paula and Larry sat down one night after Rosie and her younger sister went to bed. They decided to pivot to what they could control, building Rosie’s confidence, and to stop covering up her hair loss. It was a path they called “no secret, no shame.”

“We shifted to raising a little girl who loves herself unconditionally,” Paula said. Leaving the pink hat behind was a first step. “Rosie ran to slide, bald, oblivious to the significance of the day,” said Paula.

What Happens When You Have Alopecia

Like many others living with alopecia—there are several types, and those with alopecia universalis lose the hair on their head plus their face and the rest of the body—Rosie and her parents have had to come to terms with society’s perception of having no hair. Healthy locks have long been tied to health, youth, and even one’s sexual identity. For those with alopecia, moving past these perceptions can be a challenge.

At 3 years old, Rosie would get sympathetic smiles at the grocery store. Kids pointed fingers, parents shushed them. “Don’t stare,” they said. The worst was when people assumed she was a boy. After “Hey little guy, how are you today?” or “Good scootering buddy!” Rosie ended up in tears. The Quinns started encouraging her to wave to curious onlookers and introduce herself to make the encounters less awkward.

“My hair’s on vacation,” she’d say. In Starbucks, she marched up to bald men and told them, “Did you know you’re bald like me? We’re twins.”

“Her confidence caught people off guard,” Paula said, “and got her smiles wherever we went.”

Rosie Quinn and her mother Paula.

The Quinns started spending more time with friends that loved Rosie and focused on activities she enjoyed—and was good at—like painting. Then, one day the Quinns surprised Rosie by turning one of her paintings into a headscarf she could use on days she just didn’t want to hear people comment about her head. Wearing the scarf shifted the conversation to Rosie’s art and her skills instead of her baldness.

Rosie wanted all bald kids to have that same experience. She urged her mom to help. Soon after, Paula left her job at Google to start a non-profit, Coming Up Rosie’s. It produces headscarves and superhero capes from original artwork for people struggling with baldness and any other difference.

“We’re using this difference to help other people, which has helped Rosie’s confidence,” Paula said. So much so that at a recent alopecia conference, Rosie spoke before an audience of several hundred attendees.

What Is Alopecia

For Ebony Jean, 27, of Jackson, Michigan, her turning point came on social media.

Jean found out she had alopecia universalis when she was 4 and her hair started coming out in clumps. To cover up her bald spots, her mother sewed her hats that matched her outfits. “I remember being on the school bus, and I was sitting by myself,” Jean said. A couple of boys behind her yelled “Snatch her hat off” and they tossed it back and forth the whole way home. “It was heartbreaking,” she said. “I was just crying my eyes out.”

At 9, she lost almost all her hair. Her mom shaved her head and started making her headband wigs. “It was therapeutic for her,” Jean said. “She couldn’t make my pain go away, but she did what she could.” Jean wore wigs into her teens and twenties.

 

If Grace Jones had alopecia, she’d be Ebony Jean.

She started talking publicly about her condition two years ago at The National Alopecia Areata Foundation’s annual conference. She posed bald in a powerful stance and shirt printed with “What is Alopecia” and posted the picture of herself on Instagram and Facebook. The next day, her Facebook post had almost 1,000 likes and 60 shares.

“I was so overwhelmed with all the love and support people showed me,” she said. “I’m so grateful for that picture. That moment of releasing myself.”

Subsequent notes of support from strangers with alopecia from across the globe emboldened Jean to venture outside without a wig. NBA veteran Charlie Villanueva, who also has alopecia, reposted her picture on his social media. Since then, Jean has received dozens of photos from people with alopecia who said her confidence inspired them to go without a wig.

“People respect you more if you’re vocal about what you’re dealing with,” Jean said. “A lot of people told me, ‘I absolutely love you without the wig. I want my freedom to inspire other bodies to be free.”

Since then, Jean ventures out more without a wig, but still wears one to work, at Sephora. “I’m just not ready to go work without a wig,” she said.

Men Get Alopecia Too

Tyrone Folliard-Olson, left, came down with alopecia arata when he was just 14.

Tyrone Folliard-Olson, 34, an attorney in Minnesota, struggled for years to get his hair back. One treatment included getting 100 steroid injections in his scalp.

He was diagnosed with alopecia areata when he was 14 and his barber noticed a bald spot. For Folliard-Olson, keeping a sense of humor about his condition, finally shaving his patchy head, and ceasing scalp treatments, liberated him.

“I always said I was one of the youngest people I know to have a comb over,” he said.

Folliard-Olson was lucky not to have been bullied in school. In his early twenties in law school, he wore hats to class, often drawing looks. “It was awkward,” he said. Finally, he decided to shave his head. But it wasn’t an easy decision.

“Society places so much emphasis on hair as it relates to beauty and attractiveness,” he said, “and hair gets so intertwined with our self-confidence and our notions of self-worth. For me to imagine myself as bald was an incredibly difficult thing to do.”

“Society places so much emphasis on hair as it relates to beauty and attractiveness, and hair gets so intertwined with our self-confidence and our notions of self-worth.”

Cutting his hair off, however, felt like cutting away the negative emotions intertwined with it, he said, the worry, the anger, the feelings of unattractiveness and helplessness. “Once it was shaved, it felt like a massive weight was lifted off my shoulders,” he said.

A few years later, Folliard-Olson’s eyebrows and eyelashes started falling out. “That was even more devastating,” he said. “You don’t realize how much eyebrows frame your face until you lose them. It shatters your self-confidence. It was a dark time for sure.”

He decided to pursue treatment for his eyebrows—getting monthly shots—but leave his head alone.

Baldness Can’t Stop You

Rosie Quinn isn’t going to let alopecia stand in the way of growing up to be anything she wants to be.

When Paula Quinn asks Rosie what she wants to be when she grows up, she says a supreme court judge. Rosie has asked Paula if there could ever be a law keeping bald people from being a judge. “I tell her, ‘no honey, your baldness will never stop you from doing anything.’ But look at our society,” Paula said, “it’s hard.”

Plenty of women with alopecia work as lawyers, Paula said, but in the courtroom, most wear a wig. “Rosie’s going to go through times,” she said. “She might want to wear a wig one day. We’re letting her drive this. In our world, there is this emphasis on external beauty, but we’re really trying to sell this inner beauty thing.”

Instagram Roundups

8 Inspiring #ChronicallyIll Women To Follow On Instagram

By documenting their lives with a health condition, these incredible women are not only fighting stigma and raising awareness, they're helping build communities.

From moms toting perfectly (and expensively) dressed toddlers to travel influencers posting bikini selfies at 5-star tropical resorts, Instagram has no shortage of people showing off curated, unrealistically perfect lives. But there are also amazing activists on social media trying to do something radically different: show the world, in raw, vulnerable detail, what life is like with a chronic illness. These people represent a new wave of anti-ableist sentiment on the Internet, working to raise awareness and fight for other chronically ill people, while also showing that life with a health condition is like any other: a mixture of the good and bad, the beautiful and the ugly, and the painful and the pleasurable. If you want to follow Instagram influencers who help you celebrate life, with or without chronic illness, here are 8 amazing women you should follow.

Chronic Zebra

ChronicZebra

A graduate student in dance therapy, a field usually dominated by able-bodied folks. Instagram user ChronicZebra documents her journey with several chronic illnesses, including Enlers-Danlos Syndrome, Mast Cell Disease, and Dysautonomia, among others. ChronicZebra serves as an example that people with all sorts of conditions can get outside and do what they love, and that they can use resources to help them (like canes, wheelchairs, etc). Follow Mairead for a blend of health tips, real-life experiences, and a healthy dose of feminism and activism, plus some beautiful nature pics.

Just A Little Suga

Ariel Lawrence, aka JustALittle_SUga

Ariel Lawrence, who goes by JustALittle_Suga on Instagram, lives with diabetes and fights hard for representation of people of color in the chronic illness community. “I’ve lived with Type 1 Diabetes for 12 years,” she says.” I’m also a native New Yorker who is passionate about addressing educational inequality, finding a good street festival and West African dance.” Advocating for “diabetics on the margin,” like herself, Ariel’s Instagram is an empowered space which aims to live the change Ariel would like to see.

You Look Okay To Me

Jameisha Prescod, aka YouLookOkayToMe

Jameisha Prescod, or Jam, is a documentary filmmaker in London, who also lives with lupus and other conditions.  She started her account in 2014, and today, it is one of Instagram’s best spaces to connect with other people dealing with chronic illness. She says: “ Not only has the platform started to raise awareness for chronic illness, it’s become a community for chronic illness patients to uplift  and support one another which I think is equally as important as raising awareness.” Find her at YouLookOkayToMe on Instagram.

Leah Javon

Leah Javon

Taleah Javon, who goes by Leah, is a 23-year-old with the chronic illness works, including lupus, Sickle Cell, Crohn’s disease, fibromyalgia, and asthma. Although Taleah has been sick for seven years, a thread of powerful optimism and willpower extends throughout her account. She is graduating with her BS in Psychology this year and wants to be an advocate for sexual assault victims. Follow Taleah for honest posts about her struggles, and a living example of body positivity: she refreshingly embraces the beauty of herself and others, without reinforcing beauty myths or perpetuating shame. Find Leah Javon on Twitter @LeahJavon, and on Instagram.

Abby James

Abby James, founder of TheTiredGirlSociety

Abby James is a wife and mother from Perth, Australia, living with multiple chronic diseases, but she writes especially about Chronic Fatigue Syndrome (CFS), and how she balances the needs of her illness against her needs as a woman, mother, and writer. On her personal Instagram account, she posts beautiful pictures with an ethereal, vintage look, but it’s her founding of the Tired Girl Society that put her on this list. A platform for women with chronic illnesses to connect to one another, the Tired Girl Society gives spoonies a way to connect to one another, and find strength in solidarity. “I truly believe there is life to be lived and celebrated alongside the limitations that chronic illness causes,” she writes. “The Tired Girl Society society is a way to offer that as a safe, vibrant online space.

First Prioritea

Tatiana, aka First Proritea

Tatiana’s various autoimmune diseases, which include psoriasis and digestive problems, caused her to turn to a mostly fruitarian diet for relief. Under her First Prioritea Instagram account, she shares great juicing recipes, as well as tips on what fruits and vegetables to add to your diet to manage flare-ups. Her tips may not work for everyone, but if nothing else, you can see some darn beautiful fruit on her feed.

Fight2Breathe

Cayleigh Haber, aka Fight2Breath

Fight2Breathe is the Instagram account of Caleigh Haber, a two-time lung transplant survivor, who now advocates for others with breathing issues and cystic fibrosis. Through her Instagram account, she shares her recovery story, and aims to raise awareness of CF. It’s the perfect account to look at when you are feeling down about the impact chronic illness can have on your health, because Caleigh is an example of how to face those challenges with bravery and grace.

Prettiest_Unicorn

Elizabeth Kestrel, aka Prettiest_Unicorn

Elizabeth Kestrel, who has cystic fibrosis, fills her Prettiest_Unicorn Instagram account with a fun mix of cosplay and chronic illness awareness, with a few cat pics thrown in for good measure.  She talks about her disease while also discussing the other things that make her life worth enjoying. Her disease doesn’t define her, but it is an important part of who she is, and she communicates that with sincerity, vulnerability, and a wide stream of humor and fun.

 

 

There are many ways to be a chronically ill person, and no wrong way to engage with your own disease. Each of these influencers has taken different routes to share their story and connect with others; hopefully among them you’ll find an account you really enjoy. Social media can be a powerful tool for change, and each of these people has decided to use it to help them make a difference. There’s nothing more incredible than that.

Instagram The Good Fight

The Friendliest Place On Earth

What better way to kick off a hot August day than a day at Morgan's Wonderland, the world's first amusement park designed by and for people with special needs?

Morgan’s Wonderland in San Antonio, Texas, is the first theme park of its kind in the world to be designed for people with special needs. This summer, the organization set another world record, opening Morgan’s Inspiration Island, the first fully accessible waterpark.

A nonprofit organization that is bolstered by corporate and community sponsorships as well as a significant base of volunteers, Morgan’s Wonderland has always given free admission to guests with special needs—no questions asked—and hires a significant number of staff members with disabilities.

That sets the stage for people experiencing some things for the first time—riding a ferris wheel or a carousel, even the simple pleasure of swinging on a swing—and getting to do so among friends and family members.

The excitement is palpable. Folks spent a day at Morgan’s Wonderland and its brand new waterpark to capture a slice of that joy.

Photo: Cynthia J. Drake.

“Being here is not like other places. It has diversity and it’s for everybody. They’re really friendly here, and the staff will help you out.”

— Gardenia Ariza of Houston, mother of two, who has suffered complications following two knee replacement surgeries and has been confined to a wheelchair off and on for a year

Photo: Cynthia J. Drake.

The rides at Morgan’s Wonderland, including a ferris wheel, carousel, train, swings and these off-road adventure cars, are all equipped for wheelchairs.

Photo: Cynthia J. Drake.

“I love it. There’s so much to do, so many rides. I like the ones that go up and down and around the best, like the ferris wheel.”

Has it been a long time since you’ve been able to go on rides?

“Well, I can now!”

— Ray Longserre, who traveled with a group of residents from a memory care facility in San Antonio.

Photo: Cynthia J. Drake

“This has been far and away the most rewarding job I’ve ever had.”

I’m sure you experience a lot of powerful moments here.

“You know where Ground Zero is? The swings. To see someone swinging for the first time, and seeing a mom be able to push her child on the swing for the first time … it gets you choked up every time.”

— Dominic Fournier, assistant general manager

Photo: Cynthia J. Drake

“It’s very welcoming to the kids with special needs like my sister who has Down syndrome. My sister really likes the cars.”

— Lizjalet Rodriguez, 15, (right), with sister Stephanie Rodriguez, 11, of Houston

Photo: Cynthia J. Drake

“This is my second year volunteering here with my son Brendan through the Young Men’s Service League, a mother/son organization. My son and I did 35 volunteer hours last year and we just love it, it’s a great experience. You get to see people with disabilities and children who don’t have disabilities interacting with one another. There really are not a lot of other opportunities for that. It’s such a special place.”

— Gretchen Herrmann of San Antonio

Photo: Cynthia J. Drake

“We surprised them. They kept asking, ‘Where are we going, Mom? Where are we going?’ and when we pulled into the parking lot they asked, ‘Is this Disney World?’ It kind of felt like it, being in a big theme park but without the crowds. And it doesn’t exclude anyone — everyone is welcome.”

—  The Reagor family, Montae, Rachel, Ryan and Riley, of Mansfield, Texas

Photo: Cynthia J. Drake

Donna Brandel, a speech therapist, was visiting Morgan’s Wonderland with her nephew Logan, 12, and client Jonathan Teague of Pflugerville.

Brandel: “We really liked reading Morgan’s story—Logan is a fact guy—and I particularly like the special needs staff.”

Teague: “I like all the water parts here and the carousel and all the rides.”

Photo: Cynthia J. Drake

Morgan Hartman, the namesake of Morgan’s Wonderland inspired her parents Gordon and Maggie Hartman to create the theme park in 2005, following a vacation where couple saw that other kids weren’t interested in interacting with their daughter because of her physical and cognitive challenges. Their dream was to create a truly inclusive, welcoming environment for everyone.

Photo: Cynthia J. Drake

“The environment is very inclusive especially for kids with special needs. We don’t feel judged—you feel free, I guess. There’s so many things for kids to do. We come here every week.”

— Meribeth Patterson (right), with her 4-year-old sister Ruby Patterson of Wimberley, Texas

Photo: Cynthia J. Drake

About one-third of Morgan’s Wonderland staff members have special needs themselves. Administrators say this is an important aspect of “walking the talk” and providing positive role modeling examples for children with disabilities to see people like themselves in leadership roles.

What do you like best about your job?

“The little kids—I just like their enthusiasm. Because being disabled myself, I like how I can see disabled kids not only having fun, but being able to interact with other people. Growing up with spina bifida I was always teased a lot being in a wheelchair. … I have to say my favorite moment working here was when I first started working with operations and two little boys stood in front of me, and I asked them, ‘You want a ride?’ and I just gave them a ride around the park.”

— Connie Sauceda, 21, of San Antonio, a staff member since March. Morgan’s Wonderland is her first job.

Photo: Cynthia J. Drake

Morgan’s Wonderland worked with researchers from the University of Pittsburgh to design a brand new waterproof wheelchair that uses compressed air instead of batteries. It contains no electronic components so that it can be fully submerged in water.

Sam Carver, 16, visited Morgan’s Inspiration Island with his parents, Denise Johnson and Darin Johnson from Wentzville, Missouri. Carver was among the first to try out the new chairs, wheeling it around the oversized splash pads at Morgan’s Inspiration Island, getting a refreshing soak on the 100-degree day. (The wheelchair isn’t pictured here, as it had to be recharged with an air compressor).

How did it feel, Sam? Does the chair feel like the one you’re used to?

Sam: “Yes, it felt great. My favorite thing was to wheel around and feel independent and see the new sites.”

Denise: “Does it make you feel grown up? That is exactly what he wants—he doesn’t want to be with his parents. Typical for his age!”

Folks Video Stories Instagram Profiles

Folks Video Story: An Orchestra For Everyone

In our first Video Story, we visit the world's only classical music ensemble for the mentally ill to see how Bach and Beethoven can help keep depression in check.

Prizewinning conductor Ronald Braunstein had a much-heralded early career in the classical music scene. After graduating from Juilliard, he won the first prize in the Berlin Philharmonic conducting competition—the conductor’s equivalent of winning a Gold Medal at the Olympics. From there, he conducted all over the world, from the Berlin Philharmonic to the Swiss Radio Orchestra.

Eventually, Ronald’s career unraveled due to his bipolar depression. Stigmatized for his mental health issues, he was eventually fired from a high-profile conducting job. But that isn’t the end of Ronald’s story. Embracing his diagnosis, Ronald recentered himself and founded the Me2/Orchestra, the world’s first classical music ensemble for the mentally ill.

In this, our first video Story, Ronald Braunstein let Folks film behind closed doors of a Me2/ rehearsal, while telling us about how he turned his life around after being fired for having bipolar disorder, how music helps him balance his depression, and the ways in which the Me2/ Orchestra has helped him and others realize that having mental health issues is nothing to be ashamed about.

If you like this Folks Video Story and would like to see more, please share it on Twitter or Facebook, and like it on YouTube. And if you’d like to learn more about Ronald Braunstein and the Me2/ Orchestra, you can do so by clicking here.

Essays Instagram

Falling Back In Love With Music After Deafness

40 years after sudden hearing loss seemingly ended my career as a pop music sensation, I finally learned to embrace my deafness, and become a musician again.

For years, I didn’t want to admit to being hard of hearing, let alone identify as being deaf. Music, as the experts now tell us, is essential to brain health. We’ve always known it filled the soul and senses, transporting us through all the years of our life, good years and bad.

But what if, after a life of composing, singing and playing music, you can no longer hear it or hear it clearly as you once did? What happens to the brain, to your heart and soul—and to you—without it?

At age 29 in my left ear, and then again at 31 in my right, I became deaf-with a small “d.” That little “d” also means “hard of hearing,” “hearing impaired,” “hearing challenged,” “adult onset deafened,” “adult late deafened,” and other sobriquets. I wear a hearing aid in one ear and have no hearing in the other.

Losing my hearing when I did was a stroke of unbelievable bad luck. It came in the middle of a highly successful and lucrative music career…

Losing my hearing when I did was a stroke of unbelievable bad luck. It came in the middle of a highly successful and lucrative music career that ended when deafness arrived. Starting in 1973 as a 24-year old, I recorded an album for a small record label (Evolution), watched as two songs made it to the Top 100 on the American pop charts, while unbeknownst to me at that time, another song became a #1 hit in Brazil. I was signed to CBS/Epic Records in 1976, and spent the next few years writing and singing national advertising jingles – including a parade theme for Disney called “I’m Walking Right Down the Middle of Main Street USA” which remains today, a Disney staple.

All that and what might have been came crashing down in 1981. Not only could I suddenly not hear as loudly as I once did, but what hearing I had left came with tonal distortion and the constant drone of low and high-pitched tinnitus.

Hello deafness, my new friend. So, what do I do now? I pondered. More importantly, who am I now? My whole identity–that of a socially gregarious man and a successful composer, singer, musician and recording artist—was wrapped up in my ability to hear, and now my hearing had been compromised. I had no idea what to do, no guides to assist me. But I knew I would have to try to adapt myself to this new life without music, and the identity music had given me.

Sudden deafness is tragic and soul-crushing. The inability to communicate “normally” changed my life from one of confident engagement to a life in the shadows. Deafness hindered my simplest interactions and made day-to-day life a maze of compounding difficulties. And it hampered my desire to communicate with others, especially when they were impatient or indifferent to what I was going through.

For years, I didn’t want to admit to being hard of hearing, let alone identify as being deaf.

For years, I didn’t want to admit to being hard of hearing, let alone identify as being deaf.  Often called the “invisible disability.” I was happy to keep it that way for as long as I could. I would only admit to being deaf when there was is a “failure to communicate” (often on my part) and I could keep it hidden no longer. I took pains to avoid being grouped with the really, really Deaf, with a capital “D.”   Surely, I was not one of them, and anyway, I didn’t need a support group.

But deafness changed who I was. More than just the hearing aid I wore, it changed the way I lived my life. I avoided loud places, turned down lots of invitations to do fun things, and isolated myself by avoiding people who didn’t know of my “affliction.” And when I did get together with people, I became loud and argumentative, talking over others because that way I didn’t have to listen.

As for music? I rarely ever listened to it anymore. I would sometimes sing, but I knew there was no connection between my singing and the correct pitch of a note or phrase. I was resigned to never being a musician again.

I was resigned to never being a musician again.

Yes, I had jobs, relationships, even married. Yet even within those circumstances my discomfort and awkwardness never really left me. Those feelings only really went away when I hid from others, or went on the road for my job, but being alone much of the time eventually brought me to isolation and despair.

Things did not really change until I decided to take a shot-in-the-dark stab at reclaiming my musical life.

It was a conspiracy of different events that inspired me to return to music. In 2008, a writer from the Midwest contacted me after finding my album in a remainders bin in a music store and asked me why I never did another. Intrigued, he did an interview with me and wrote a story for his music blog. That story unearthed fans of 30+ years from around the world that I never knew existed. I vowed then to at very least put my first album onto a CD, but I never believed that making music again was in the cards.

But in 2009, I got my first digital hearing aid which allowed me to hear a much broader range of tones and I realized that I might be able to hear what I needed to hear to get back to music making. In 2010, a fan of many years visited me with a wonderful story as to how he had grown up with my music as a lad in South Africa where his Dad ran radio stations. His encouragement played a significant part in moving me forward. Around the same time, my wife passed away at a young age and her death impressed upon me the need to pursue my passion without delay if I ever hoped to give music a try again.

Things did not really change until I decided to take a shot-in-the-dark stab at reclaiming my musical life.

Lots had changed since I had first become deaf. An auditory trainer brought me up to date on new brain research that indicated that even the small amount of residual hearing I had left might give me enough of a thread to improve my speech comprehension. That would not only help me with my isolation by allowing me to spend more time with others… it had the tantalizing possibility of improving my musical hearing through listening exercises.

Meanwhile, I discovered that hearing aid technology had expanded beyond speech, and now allowed me to hear musical tones I hadn’t heard for years. Galvanized, I worked with a vocal coach to recover my voice, and work breathing techniques and vocal stamina. Phonak, my hearing aid company, not only helped me to launch a Kickstarter campaign to return to music, but also enlisted me to write articles for their blog, Hearing Like Me, about my life with hearing loss. Over the next three years, I wrote more than 35 blog articles and responded to questions and comments not only about music and hearing loss, but also about how to negotiate a life with serious hearing challenges.

This was the “Aha” moment that I believe ultimately saved my life.  For most of my adult life, my hearing loss seemed like a meaningless personal tragedy. I was never able to compensate for it professionally, or to find peace with my new identity as a deaf person. But now that I was connecting to others about my experience through writing, I suddenly found myself coming to peace with who I now was, and the strength to start rebuilding my life in earnest. I now had an international audience of people like me who had endured many of the same things that I had and with whom I could communicate and perhaps even inspire. After years of trying to avoid fellow deaf people, I had finally managed to connect to them… and in so doing, found my place in the world again.

Eventually, I attended my first ever hearing loss community meeting and joined the Association of Adult Musicians with Hearing Loss (AAMHL). I was mortified to learn what I had been missing all these years: peers and new friends who coaxed me out of the shadows, and helped me see that there was more to life after hearing loss.

After years of trying to avoid fellow deaf people, I had finally managed to connect to them… and in so doing, found my place in the world again.

Moving beyond my own deafness reinforced my desire to return to music. While my audiogram has not changed in more than 40 years, I now see that it reveals more than just the defects in my hearing; it also allows me to see what hearing still remains, and target it with new compositions. After two years of training and endless practice, I have returned to performing live. These performances aren’t perfect, of course, but I simply call them “works in progress.” I have even gone back into the studio to record new music, and I’m now planning a busy year including a trip to Brazil to perform for fans who made one of my original compositions a #1 song there in 1974.

Stu Nunnery today, performing in St. Louis.

I could never have imagined that my hearing loss and the tragic narrative that grew out of it would become my redemption; that in rebuilding my connections to music and to my community of peers, I would rediscover joy and my sense of self. I may never regain my hearing, but by finally embracing my abilities in whatever forms they might take, I have finally found peace.

Beethoven is reputed to have said that “playing a wrong note is nothing – but playing without passion is unforgivable.” And famed trumpeter Miles Davis once said that “if you play a wrong note, continue – It’s the next note that counts.”

Whatever your challenges, find the notes to your own song and sing them with passion. They’re perfect just the way you make them.