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The Good Fight

The World’s Only Classical Music Ensemble For The Mentally Ill

After his own career almost unraveled, Ronald Braunstein founded the Me2/Orchestra to help fight the stigma against mental illness in the classical music community.

Prizewinning conductor Ronald Braunstein had a much-heralded early career in the classical music scene that began to unravel due to his bipolar disorder. But his experience with this condition eventually led to the founding of the Me2/Orchestra: the world’s only classical music ensemble for the mentally ill (and their advocates).

The conceptual origins of Me2/ date back to 2007, when Braunstein, then living in Prague, observed the huge gap in music education between public and private schools. “I wanted to create an orchestra that was inclusive of students from all socio-economic levels. The idea never went anywhere in Prague but I picked up that seed a few years later in Burlington [Vermont] – only this time my heart was in it. The inclusion I sought had to do with mental health rather than economic disparity,” he says.

There was good reason why mental health was a priority: Braunstein had just been fired from a job because of his bipolar disorder. “I was in the process of sorting out my mental and physical health and I knew I didn’t want to get a job where I could be discriminated against again. I decided to create my own orchestra and ensure that it was a safe place,” he says, before adding, “I knew that if I was feeling so much pain from being discriminated against that there must be other people like me.”

 

Ronald Braunstein.

I knew that if I was feeling so much pain from being discriminated against that there must be other people like me.”

Braunstein, who was born in Massachusetts but raised in Pittsburgh, says that as a child his father took him to see a doctor, who diagnosed him with “bad nerves” and “prescribed some type of medication, maybe it was valium.” He adds how, “Over the years several people told me that I needed to see ‘a doctor,’ but this was during the ’70s when nobody spoke [about] mental health and I honestly didn’t know what they were trying to tell me.” For many years he contended with symptoms “but things started to get really revved-up in [his] early twenties.”

While studying at New York City’s famed Juilliard School his condition became severe. “I ate very little and didn’t sleep. I thought that food and sleep took away my brilliance. I experienced all of the classic bipolar behavior: delusions of grandeur, rapid pressured speech, irresponsibility in dealing with money, etc.”

However, he managed to graduate from Juilliard in 1978 with a degree in conducting. And at age 23, he became the first American to win the Gold Medal in the Herbert von Karajan International Conducting Competition in Berlin. This prize greatly boosted his early career and took him all over the world as a guest conductor at orchestras ranging from San Francisco to Norway to Japan. He later joined the Juilliard conducting staff.

Braunstein was first diagnosed with bipolar disorder in 1985. “I took a friend to his psychiatrist appointment,” he recalls. “And, through an odd turn of events, I walked away from that office with my own diagnosis.” He feels that the stigma surrounding mental illness has decreased since the time of his diagnosis, but “we still have a long way to go.” That said, he hasn’t encountered any stigma-related obstacles when trying to arrange a Me2/ performance. And he views the orchestra as helping to “change audience members’ perceptions” about the mentally ill by “showing what we are capable of in performances.”

Many believe a link exists between creativity and mental illness, and Braunstein notices a particular prevalence of bipolar disorder among the musically gifted

Many believe a link exists between creativity and mental illness, and Braunstein notices a particular prevalence of bipolar disorder among the musically gifted. Of brilliant composers likely afflicted, he gives a slew of examples: Schumann, Tchaikovsky, Mahler, Berlioz, Bruckner, Rachmaninoff, Elgar, Handel, Holst, Mussorgsky, and Rossini. Another prominent example is his favorite composer, Beethoven. He also admires Tchaikovsky, Johannes Brahms, Otto Klemperer (whose battle with bipolar disorder was well-documented), and Igor Stravinsky. Among his influences are Leonard Bernstein, Seiji Ozawa and, especially, his mentor Herbert von Karajan, the longtime conductor of the Berlin Philharmonic, who taught him “how to really hear the orchestra” while conducting.

Braunstein conducting the Me2/Orchestra.

Of his own dual experience with gifted musicianship and mental illness, he says: “When I am in a manic phase I can be brilliant, or so it seems. When I come to a more stable point I can see whether the brilliance was actual or an illusion. And then there’s the question I always have after conducting a great concert: whether it was my musicianship or my illness.” He says that his symptoms are managed more effectively these days and are less likely to distort his self-perception. Previously, he was more inclined to have a “lack of insight into how [he] was doing” and hold an unrealistic opinion of his performance.

The question I always have after conducting a great concert [is] whether it was my musicianship or my illness.

The flagship chapter of Me2/ was established in September 2011 in Burlington, Vermont. September 2014 saw the launching of the Boston chapter. Though many members have diagnosed conditions, Me2/ also includes those who support the mentally ill, along with mental health professionals, such as one psychiatrist who plays trumpet for the Boston orchestra.

Me2/ has performed at several formidable venues, such as prisons and psychiatric hospitals – settings that don’t exactly evoke thoughts of classical music, but actually have provided the most engaged and appreciative audiences. In such places, the music “reaches their souls,” observes Braunstein, who adds how Me2/ has “never been unappreciated” at any type of venue.

 

Currently, fifty musicians belong to the Me2/Burlington, and the Boston chapter has 35. The orchestras perform 5 or 6 times per concert season. Of the musicians who join, almost all stay for a long period. There are no auditions to worry about. Braunstein’s programs are “designed for the middle-level of the orchestra. For the people who are less experienced, we offer coaching but technical perfection is not what we are about. We have professional musicians sitting alongside near-beginners and it works.” Many other members are skilled amateurs who “received extensive training earlier in life.”

Among mentally ill members, conditions range from depression to PTSD to schizophrenia to dissociative disorder, among others. Members aren’t required to disclose their diagnoses, but some do so “within the first 5 minutes.” Others are less than forthcoming at first. Braunstein recalls one member who “didn’t want her name printed in materials because she didn’t want to be associated with ‘the mental health orchestra.’ She didn’t disclose her diagnosis for a long time; however, after playing with us for a few years she has now become an outspoken advocate about erasing stigma.”

Though a few members prefer to keep to themselves, many others become friends and socialize outside of Me2/. Braunstein describes rehearsals as “extremely social” and adds that the “positive energy is palpable.” He recalls one man who, after a few months with the orchestra, had reconnected with his long-estranged extended family because Me2/ “gave him the confidence and self-respect he needed.”

Another member considers each Me2/ rehearsal his “detox” from the remainder of the week. And for some members with a tendency to self-isolate, the orchestra “gets them out of the house and surrounded by supportive friends once a week.”

Braunstein currently lives in Burlington, Vermont, with his wife, Caroline Whiddon, a Me2/ cofounder who serves as Executive Director and also plays the French horn. They drive back and forth from Burlington to Boston each week, as the Boston orchestra rehearses every Monday and the Burlington one every Thursday.

“[Music] is a space to be in that is safe and beautiful… it has given my life meaning.”

The conductor’s future aspirations are “to continue to grow and learn as a musician and a human being. Me2/ is my project for life.” His life-project has grand plans in store: A Me2/ chapter has just launched in Portland, Oregon, and Braunstein anticipates another chapter launching this summer in Atlanta, Georgia. In three years, he hopes to have 20 affiliate programs in various cities. Ten years from now, he sees Me2/ having “affiliate programs nationwide, including orchestras and various ensembles.” He also envisions “hosting conferences where Me2/ members from various locations come together to rehearse and perform in massive events.”

Though some afflicted persons might view music as an escape from psychological duress, Braunstein prefers to think of music as “a space to be in that is safe and beautiful.” When asked about the effect of Me2/ on him personally, he concisely replies, “It has given my life meaning.”

Me2/ is open to ages 13-80+ and there’s no cost to participate. For further information, see the website.

The Good Fight

The Healing Power Of Music Medicine

When being sick in the hospital is getting kids down, this charity saves the day by kicking up the jams.

One of the most potent measures of healing doesn’t come from a person’s lab results, but from their level of happiness. Recognizing that treatment comes in many forms, there is a Portland, Oregon-based nonprofit that strives for just that: helping young hospital patients find joy in every challenging moment through the serendipity of live music.

After feeling helpless watching her daughter battle cancer, Regina Ellis wanted to create something she felt would be meaningful to her and her family. She founded the Children’s Cancer Association with which she launched a program called MyMusicRx. which brings well-known artists and top-quality, professional instruments into hospital rooms of critically-ill kids for what she calls “music medicine.” The organization believes that the power of bedside music can have a transformative effect not just on patients and their families, but on caregivers and artists as well.

Folks connected to Ellis on the phone to talk about the power of music in the face of illness, and surviving hardship with love.

Regina Ellis of the Children’s Cancer Association and MyMusixRx.org.

I’m excited to talk to you about MyMusicRx because I’ve admired what you have accomplished with this project. I would love to hear more of its backstory.

As you may know, the Children’s Cancer Association is the only organization of our kind in the nation working to position joy as a best practice in children’s hospitals.

The project started because of a very personal experience battling cancer with my eldest daughter, Alexandra. During that time, I was inspired by the way Alexandra oriented her head and heart towards life. Even though she had a very aggressive disease and spent half of her life in hospital, she really welcomed each day looking for joy in the corners of the hospital room experience, all amidst hardships such as high dose chemotherapy and other surgical procedures. She could always find what was beautiful in that moment.

After Alexandra died in 1995, we brought friends and family around our kitchen table to create an organization that helps kids reduce the stress and anxiety of pain through the power of joy. We were very thoughtful about creating something new in the world: we’re not a chapter organization or a franchise of a national model. We’re a local organization that has spread out across the nation based on need.

I understand that the MyMusicRx program serves the families who are in the hospital, as well as their children. Is your goal to speak directly to the experience of the entire family?

That is correct. We know from experience that being face-to-face with illness impacts the entire family. The whole family is gathered around the hospital room: not just the mom or dad, but the siblings as well. So our goal is that our programs help support and strengthen families, addressing the stress and anxiety not only of the child, but of the individuals around the child.

What was your experience when Alexandra was first diagnosed? How did it impact your family?

Obviously, it had a big impact. This was around 25 years ago, so I was in my late twenties, with two little children and my husband, Cliff. Luckily, we were very lucky to have a big Italian family around us, but cancer was still this unexpected guest in the middle of it. We were very fortunate to have lots of people around us, but it was also a difficult journey. We spent half of every month in the hospital, and the other half recovering and trying to live as much as possible.

Alex created a “To Live” list and wrote down over 30 things that she wanted to do. Things like “make a tie-dye t-shirt” or “bring snickerdoodles to the neighbors” or “have a fun pizza party.” We made a point of checking them all off, even though we were in the hospital.

Some of those simple things were really beautiful. The last thing on Alex’s list was: “Have a root beer float in one of those huge icy mugs.” She did that the day before she died.

So that was the mission, I think, we were given. To figure out a way to live alongside of cancer that gave us hope and allowed us to be a family. And after Alex died, to think about bringing that healing power of joy to other seriously ill kids around the country and the world. Because kids need more than medicine.

24 years ago, you need to remember there was no platform for music in hospitals. You might have some carolers during the holidays, or a special show when an artist came to the community, but otherwise there was nothing. We pioneered what that looked like.

In addition to holding bedside concerts, MyMusicRx brings instruments to patients.

Were you already thinking about MyMusicRx when you were in the hospital with Alexandra, or is this something that came later?

We saw the power of music in our own family over many years at the hospital. People brought their guitars and harmonicas and violins and voices, and we would gather around the hospital bed, playing, almost like you’re sitting around a campfire. The doctors, nurses, even other families would come in and join that. The power to transform these moments from ones about disease into ones about being human beings through the power of music was profound.

I’ve had similar experiences with my travels through healing and hospitals. I think the music idea is so powerful because it doesn’t take a lot to come into a room with an instrument and play for someone who is not feeling very well.

Twenty-some years ago, people told us: “This will never work. Are you kidding? We’re in a hospital here. Instruments aren’t going to help. There’s no way.” But little by little, we began to demonstrate that our program worked to reduce pain and stress.

Music is simple. We thought in terms of what a child or family needed. “Hey, this kid has a respiratory issue so we’re going to bring in an instrument that helps them with their breathing.” or “Hey, this kid needs to move their arm after surgery to strengthen their arm.”

MyMusicRx is the only program that extends a digital musical program that brings the bedside experience online, 24/7. It’s now available to about 7,500 kids and over 25 pediatric hospitals across the country. If kids want music at 2:00AM, we bring it to them then.

Was music a big part of your life before MyMusicRx?

I was certainly a fan. I wouldn’t call myself a musician but I’m just pretty damn good with a tambourine. *laughs* But I had the privilege of having incredible musicians provide the soundtrack to my life, so when the time came, it was easy to see the power that music could provide to deliver healing to kids in a different way.

We believe that the best things are the simplest things. Whether it is five or thirty minutes a day, we believe these small musical interactions are just critical for kids who are facing life-threatening or terminal illnesses.

That’s awesome. So how can people get involved? How can they help?

 Whether you’re a band member, a volunteer, or a patient, the best way to connect with us is to go to mymusicrx.org. If there’s something in your community, we can connect you, and if not, we’ll help you start one. Just reach out! We’ll help in any way we can to share music and joy to people in need.

Essays

How The Beatles Helped Me Survive Brain Cancer

When you're getting your brain tumor blasted with protons, a masterpiece like the White Album goes a long way towards helping you keep your sanity.

The Beatles 1968’s double-disc record The Beatles (otherwise known affectionately as “The White Album”) has always been one of my all time favorites. But it wasn’t until I got brain cancer that I truly learned to appreciate it, and to understand some of its deeper truths.

For six weeks, I was locked down into a proton therapy machine for 45 minutes at a time, as millions of invisible particles bombarded my brain, trying to burn out the malignant tumor that was growing inside. It may be slightly hyperbolic coming from a music geek like me, but if not for The White Album, I might never have survived that time.

An original vinyl copy of The White Album.

When I was diagnosed with cancer, I had no knowledge of what proton therapy was, or what it entailed. As I was introduced to the treatment, my doctor described the process. It sounded relatively easy, burning out malignant tumor growth in the center of my brain. I joked with him: “So you’re going to shoot lasers into my head?”

“No,” he replied, deadpan-serious. “Proton beams are NOT lasers.”

“Will this be anything like the MRI machine?” I asked. I’d already had a dozen or more MRIs validating the shape and size of my tumor, so I already knew what the experience was like: the claustrophobic feeling of being trapped in that tiny tube, enveloped by blood-curdling blasts of big robotic rumbling. As a professional music critic, I found it especially discordant: an MRI test is the antithesis of music. Luckily they give you earplugs.

“No,” he told me. “You won’t hear a thing.”

But, luckily, that wasn’t true.

Bird’s eye view of getting your brain tumor blasted by protons.

When I disrobed and entered the proton room for the first time, the ambience was forbidding. It was a large space with a high ceiling, and the room was chilly as I lay down on the table. They fitted me with a custom-built hard plastic mask; it fit nugly to my face, assuring that the proton beam could direct its blast to the precise spot of my tumor. Once I lay down, the mask was clipped to the table, locking me–and my head–in place.

“Do you like music? We have a few CDs over here if you’d like to listen to something while we go through our business setting up,” the nurse asked me.

I get asked about music a lot, but I’m always hesitant to make suggestions. I feel like my brain is so full of music that I can barely pick out one or two songs without worrying that the whole piñata will explode.

Keep it simple, man, I told myself. “Do you have The Beatles?”

“Ah, we do! The White Album, does that work?”

“Oh my god, that’s amazing. Yes, please.”

A blessing from the universe. Everything about The White Album has fascinated me, ever since I first heard it. It represents an epochal moment in music history.

The year is 1968. The Beatles were splintering. After a couple months spent hanging out in Rishikesh, India with Maharishi Mahesh Yogi and smoking plenty of grass, The Beatles had written some of the best pop songs ever. But a different kind of cancer than my own had found root in the band. Experts differ on what it was: was it John and Yoko’s relationship? Was it Paul’s perfectionism? Was it Ringo’s feeling disrespected, or George’s deep dive into Hinduism?

Whatever it was, by the time they came together to complete one of their last original albums, they could barely be in the same room together. The record is entirely built piece by piece, like slowly healing scars.  Each song demonstrated the strength of the writer, but revealed how distant these individual band members had become from the group. Once complete, the work became one of the last records they’d ever make together.

The only thing that stopped me from dancing was the fact that I was locked to the table, getting my brain blasted with protons.

Despite the tumult, it just worked. And that record kept me sane, seeming to reflect my own experience of being treated for cancer in a space oddly melodic in its own discord.

Paul’s tongue-in-cheek rocker “Back in the USSR” starts with the sound of a jet plane taking off. It was an energetic  launch pad for my radiation room, but I found the humor in it: it always gave me a smile. The only thing that stopped me from dancing was the fact that I was locked to the table, getting my brain blasted with protons.

But that’s just the blast-off. Part of what defines The White Album is its melancholy edge. Although the tracks first seem saccharine sweet, each song has an undercurrent of pain, weeping, and need.

The only truly silly song, “Ob-La-Di, Ob-La-Da”, may have been a cute track, but it caused tumult within the band. Everyone hated it but Paul. But that song is quickly balanced out by the powerhouse of “While My Guitar Gently Weeps,” where George’s breath itself sounds like it hurts.

From there, we lead directly into “Happiness is a Warm Gun.” That’s what this album is to me: the happiness of a warm gun. Each and every song has a trigger: my nerves tingle, my body couldn’t move.

Rocking out on the therapy table.

“Martha My Dear” sings: When you find yourself in the thick of it. Just like I’m in the thick of it now.

I read “I’m So Tired” as a cancer song. I don’t know what to do. My mind is set on you? I’d give you everything I’ve got for a piece of mind. And forgiving the pun, do I hear that: I’d give anything for some piece of mind after all this.

So even though I’ve heard the White Album a thousand times, and will probably hear it a thousand more, I never really heard it like I did then. Every time I left the treatment room, I felt rejuvenated: the war on my cancer, the power of science and my own body, all melting away into the audiophonic bliss of an album that sometimes felt like it had been written just for what I was going through.

Not going to lie. Some days I felt the willingness to allow despair to win. Some moments I didn’t want to go to treatment at all. I went day in and day out for weeks. It was a tough time where my heart was constantly racing, and I was battling doubt at every moment. But music puts hope around me… and, more specifically, the White Album does it for me, maybe more than any other. And if I had to explain why, I’d say it’s because it’s an album that prays for you.

Music puts hope around me… and, more specifically, the White Album does it for me. It’s an album that prays for you.

Since the White Album is 93 minutes long, and my proton beams sessions only half that, the last song I heard every session was “Blackbird.” It’s a deeply peaceful track, where the titular blackbird chirps in the background, while Paul sings a haunting coda:

Blackbird singing in the dead of night

Take these broken wings and learn to fly

All your life

You were only waiting for this moment to arise

You were only waiting for this moment to arise

You were only waiting for this moment to arise

Now, my kids are asleep, and I’m listening to the record on my headphones, thinking about my treatment. The whole experience feels so distant, like it was all a dream or a strange piece of performance art. Perhaps when the White Album was put together, the band brought back bittersweet moments for them, too.

The Beatles playing together for the last time.

But the music of the White Album transcends The Beatles’ in-fighting, just like it transcends cancer and proton beams. It’s not about the regrets of the past, or the fears of the future. It’s just a moment, piercing into right now, whether that now is in your headphones or strapped to a table while protons get shot into your brain.

Later, when they played their last performance standing on a London rooftop, the end happened but then the “you” was the listener, us! We took that music and translated it into something beyond words, beyond The Beatles, beyond proton beams, beyond cancer. It’s just a moment, piercing into the now.

The way music is supposed to be.

Right now.

Q&As

Madness, Medication, And Music

Abused as a child, acclaimed concert pianist James Rhodes combats PTSD with Mozart and Bach.

When he was seven years old, James Rhodes heard classical music for the first time: A live recording of Johann Sebastian Bach’s Chaconne for solo violin in D minor, playing from a beat-up Sony cassette machine in his London home. Rhodes, now an acclaimed concert pianist, believes he would’ve met an early death by suicide or drugs had he not heard that funereal Chaconne as a boy. His first encounter with Bach “felt like being freezing cold and climbing into an ultra-warm and hypnotically comfortable duvet with one of those £3,000 NASA-designed mattresses underneath me,” Rhodes writes in Instrumental: A Memoir of Madness, Medication, and Music. “I had never, ever experienced anything like it before…. Music has, quite literally, saved my life.”

Rhodes’ autobiography frankly discusses the years of trauma that followed his childhood abuse.

Between the ages of five and ten, Rhodes was repeatedly raped by a gym teacher named Peter Lee at his posh London prep school. Bullied into silence by his rapist, Rhodes was thirty when he first spoke of this brutal ongoing trauma—which, by that point, had led to “multiple surgeries, scars (inside and out), tics, OCD, depression, suicidal ideation, vigorous self-harm, alcoholism, drug addiction, the most fucked-up of sexual hang-ups, sexuality confusion, paranoia, compulsive lying, eating disorders, PTSD, [Dissociative Identity Disorder], and on and on,” Rhodes writes. “Child rape is the Everest of trauma.” Polite euphemisms like “abuse” and “molestation” don’t cut it, he says: “Let’s call this what it is.” After Rhodes went public with his story, police tracked down Lee, who was working in Britain a boxing coach for boys; Lee died of a heart attack before he could stand trial.

Far more than psychiatric medications and stints in mental hospitals, classical music sustained Rhodes through his darkest hours. After transferring to a new school at age ten, he began obsessively studying piano, worshipping composers like Prokofiev, Rachmaninov, Schubert, and Ravel. In 2009, he released his first live album, Razor Blades, Little Pills and Big Pianos. Defying the stuffy conventions of classical music culture—he proudly wears his tattoos and Chuck Taylors on stage—the largely self-taught pianist has helped make the compositions of dead men in powdered wigs accessible to contemporary audiences.  

Told in frankprose, Instrumental is a harrowing testament to the resilience of the human spirit and the redemptive powers of art. It’s also a call to end the culture of silence surrounding sexual abuse. The suppression of Rhodes’ story continued when his ex-wife took him to court in attempt to prevent the publication of Instrumental, arguing that its discussion of rape and mental illness would psychologically damage their son. In 2015, the U.K.’s Supreme Court overturned the ban on the publication of Rhodes’ memoir; a judge argued, in part, that the book could help survivors of sexual abuse.

We spoke to Rhodes about how to listen to survivors of sexual abuse; how mentally ill artists create in spite of, not because of, their mental illness; and which classical compositions might provide momentary relief from today’s politically-induced anxieties.

 

Your book is about music as salvation. How did music keep you alive?

It showed me that there was something beautiful in the world that, at the time, seemed only hostile and ugly. It provided, continues to provide, proof of something good.

In Instrumental, you write that “Shame is the legacy of all abuse…. I am many things. I am a musician, a man, a father, an asshole, a liar and a fraud. But yes, most of all I am ashamed. And perhaps there is a chance that I am those negative things as a result of being ashamed. That if I can accept, befriend, diffuse that feeling of blame, fault, badness, evil that is inside me, the defects and beliefs that seem to keep the world operating against me will fall away.” How has publicly discussing your abuse shifted your experience of shame, if at all? Has it helped you “accept, befriend, diffuse” feelings of shame?

No. If anything it has increased the feelings of shame because it’s all out there and exposed. But I don’t think that’s a reason to not talk about these things. The more people talk about difficult subjects, the easier it will become for others to talk and the less stigma will be associated with those topics.

[Music] showed me that there was something beautiful in the world that, at the time, seemed only hostile and ugly.

“Composers and mental illness go hand in hand like Catholics and guilt, or America and obesity,” you write; your book offers many examples of genius composers who suffered from various mental illnesses. The contested correlation between creativity and mental illness has long been the subject of much romanticization, research, and debate. In your experience, how has mental illness impacted your creative process (and vice versa)? Do you think you’re an excellent pianist in spite of or, in part, because of your mental illness?

I don’t think I’m an excellent pianist period! But thank you. And I also think we are all quite mad, to a greater or lesser extent. People who create do so despite any mental illness not because of it. They (we) do it because at 4 in the morning when you want to throw yourself out of the window because you’ve had too much to think, you can sit at a piano or a computer or a canvas and find a way through, a distraction, a way to disappear safely.

Your experience at a psychiatric hospital in Britain—which involved being force-fed medications—was like something out of One Flew Over the Cuckoo’s Nest. The laundry list of diagnoses you received within days included “bipolar disorder, acute PTSD, autism, Tourette’s, clinical depression, suicidal ideation, anorexia, DID, borderline personality disorder.” Did any of these diagnoses help you better understand and manage your suffering at the time, and do you find any of these diagnoses helpful now?

No. You can see 10 different psychiatrists and get 10 different diagnoses and multiple different meds. It’s such an inexact science. And we understand so little about the mind. I just accept that I’m not quite ‘right’ in the head and get on with it.

Through his life, James Rhodes has turned to music to help cope with the haunting repercussions of childhood trauma.

The first family friend you told about your abuse responded by saying “Well, James, you were the most beautiful child”—probably one of the least helpful things you could say in that situation. Others have callously suggested that you are “only talking about the abuse that happened as a means of selling albums or getting sympathy.” What are other common wrong ways to respond to stories of sexual abuse? What are some things people have said or done that you have found particularly helpful and healing?

The most helpful things in my experience are belief, empathy, compassion and, most of all, having someone listen. I think perhaps we’ve forgotten how to listen, how to shut up. So often we are speaking to someone and just know they are reloading as we are talking, waiting to spew words at you. Listen, be still and don’t shy away from uncomfortable subjects.

The most helpful things in my experience are belief, empathy, compassion and, most of all, having someone listen.

When a judge ruled to allow you to publish your memoir and communicate publicly about your traumas, he argued that the book could help other victims of abuse. How have rape survivors responded to Instrumental? What are some examples of people who’ve been helped by reading your story?

There’s been an overwhelmingly positive response. Thousands of messages from people who have gone through similar things or those who have loved ones (nieces, nephews, children, exes, etc.) who they now understand a little better. It’s been an astonishing, humbling, amazing response. And reinforces why it’s so important to speak out and also why the UK’s Supreme Court made the right decision in overturning the ban.

What composers are you listening to most so far in 2017?

I’ve listened to a metric ton of Mozart recently. Teodor Currentzis conducting Don Giovanni and Figaro mainly. He’s one of the greatest living musicians in my opinion.

What pieces of music would you prescribe for momentary relief from today’s rampant politically-induced anxiety?

Music isn’t going to fix the Trump disaster, any more than it’ll fix Brexit or mental illness. But it does make things a little bit shinier and it does provide solace and a sense that there is something better in this world than the insanity on display right now. Bach’s keyboard concertos played by Glenn Gould, Rachmaninov’s 2nd piano concerto or any of the pieces on the Instrumental Spotify playlist can only help.

 

Q&As

Inside The Rhyme Sayer’s Brain

Hot on the heels of the international Hey Kirby tour, musician and producer Aesop Rock talks to Folks about his lyrics, latest album, and life-long battle with mental illness

At times impenetrable, at times hilarious, almost always infuriatingly impressive: Aesop Rock, the New York-born rapper is known for his dense and complex songs, A 2014 study named his the largest vocabulary in hop-hop, surpassing 85 other major artists, as well as historic writers including Shakespeare.

With seven studio albums under his belt, Aesop released his latest solo effort The Impossible Kid in April last year. The album confronts mental illness, aging, and includes the tour titled track Hey Kirby, an ode to the cat who helps him deal with depression. It’s considered his most ‘accessible’ work to date.

“I’m not trying to be the lyrical miracle anymore,” he says. “I just want to be a better writer.”

In 2002, the documentary Bazooka Tooth, which shares the name of Aesop’s fourth studio album, first gave a glimpse into the rapper’s life. It was also the first time that he opened up about his struggle with mental health to a wider audience. 

“Emotionally I’ve seen the bottom of the barrel, just based on some the things that have happened to me,” he said. “I set my standards really high and end up stressing myself out to the point where I can’t do anything… I’ve had problems just operating. I’ve had issues with depression.”

He’s more guarded these days, shying away from interviews that approach his personal life, though his music remains as unflinching as ever. 

Following mention of his therapeutic relationship with Kirby, his companion cat, in Folks, the artist agreed to answer a few questions. We caught him on the last night of tour.

 

Looking back through interviews and videos, I can see you’re not necessarily super open about your mental health, though you have a lot of allusions to it in your work. Why is this particular card one you keep close to your chest?

I guess I just try to walk the line.  It’s on my mind constantly, so obviously it works its way into the music in some form or fashion–where I can choose to be as cryptic or forthcoming as I want to be.  At the same time, I’ve had a life long struggle with a lot of this stuff, and it make me feel like less of a human to not have been able to get it sorted by now.  In short–it’s embarrassing.  At the same time, what is there to say? I’m not asked that often about it, and the reality of the answers about those kinds of questions can go on for years.  There’s no easy, quick answer, and it’s never fun to talk about.  Even having people approach and thank me for being somewhat open about some of it–I mean, it’s nice, but ultimately it doesn’t solve my own issues.  I wouldn’t even really know how to describe to people what goes on upstairs for me, so often times it’s easier to steer around it. 

‘Kirby’ was one of the earlier songs you wrote for The Impossible Kid, the track that helped “break the ice.” As an “MD recommended sense of purpose,” how does having this cat around affect your life and wellbeing?

I think she just gave me some sense of purpose day to day.  She needs me to survive, and it feels good to be needed, even though she doesn’t really have a choice. Taking care of something at least gives you a mission for the day, so if all else fails, I still kept this other living creature alive, and maybe that’s worth something. 

 

After ‘Kirby’ and ‘Rings’, ‘Shrunk’, which deals with therapy, is probably my favorite track on The Impossible Kid. I think because I feel like you’re really just trying to have fun with a topic that’s not fun at all. Is the way you feel at therapy akin to the way you feel when fans or critics pull apart your lyrics to look for the deeper meaning?

Not necessarily. I learned very early that nobody will ever interpret these songs in the way that they were intended, at least not 100%.  That’s something you just come to terms with. The relationship I have with my music is mine only. Therapy is it’s own monster.  Some love it, some hate it; I’ve been to more than I can count starting very early in my life. It’s such a crap shoot.  I guess you walk in expecting someone with wisdom and answers. Really it’s just a person who took some classes and read some books.  They can certainly hit you with a nugget of information here and there, but it’s basically a paid set of ears. The entire concept is odd, and it’s pretty easy to find the stuff off-putting.  Obviously it’s all about finding the right person, but that can take years.  Then you have to see if you can afford it, or how often your insurance will allow you to go, etc etc.  There’s so many roadblocks.  Not to mention, when it’s time find someone new, for whatever reason, you then have to go back in and start from square one… again.  The entire process is daunting and difficult and occasionally just humorous. 

I learned very early that nobody will ever interpret these songs in the way that they were intended, at least not 100%.

You’ve said that ‘the impossible kid’ is you, and that that’s something to do with beating yourself up for “struggling to be happy.” Do you think writing the album has helped you come to grips with that?

I was aware of it before writing the album, it’s really been stuff I’ve been aware of for so long I can’t even tell you.  The album just kinda came out how it did.  It wasn’t supposed to be some foray into mental health or anything, but a couple things of that nature were swirling around at the time and made it into the narrative.  I wouldn’t say there’s anything on there that I wasn’t already aware of, and I don’t know it’s the type of stuff I’ll ever come-to-grips with. It’s everyday.  

You’ve said you “avoid social experiences at all costs,” and even the more pointed “fuck the conversation.” How does that marry up with being a public figure, going on tour and using social media? 

Social media is pretty difficult at times. I use it to promote my music and occasionally just let people know I’m out here and alive, working, etc.  I guess it’s essentially part of my job.  I’ve never done Facebook and would probably hop off Twitter and Instagram if I thought I could maintain my work without it. I already don’t follow anyone on Twitter because I just find it all depressing. I use Instagram to look at artwork and skateboarding, nothing really music related. Tour life is something that took me years to get used to, or put a system in place that allows it to happen. I quit my last day job in 2001 and had my first-ever national tour set to rollout about a week after.  I ended up sorta being overwhelmed in the 11th hour, and I skipped out on the whole thing.  That’s my starting point.  Nowadays I can make it work, I keep my tour party small, and I can power through it. I like to shake hands and say thank you to everyone after the show, because I’m truly grateful that I am allowed this job and that people follow my music, but even with that stuff, I sorta have to psyche myself up to go and do it. Maybe since it’s a couple hundred very quick interactions with almost no depth, I can just close my eyes and walk forward.  I don’t have to get close to anyone in those circumstances.  It just a big explosion of surface-level interaction.  

 

I watched the Bazooka Tooth documentary, which is 15 years old now. Do you relate much to it, to the person you were then? You’ve talked a bit about what turning 40 has meant for you. Do you think your work has the same identity and purpose?

I haven’t watched that in a long time. I’m sure I’d relate on some level.  I’ve actually always found it extremely difficult to see what my work even looks like from the outside looking in. I don’t know how it comes off, or where people place it in the musical landscape.  My life is very different than it was 15 years ago, and there are elements of my purpose that evolve and adapt, but some of the foundation is there.  I like to put words together.  I like to piece sounds together. I’ve gone through periods where the music was all about the crew experience, being around people, collaborating and rapping with others.  These days it’s a much more introverted endeavor. I guess maybe that’s how it was too in the very beginning, when you’re just writing alone in your bedroom with no expectations that anyone will even hear the stuff.  Then it turned into a social endeavor, a way to meet others into the same craft. Now I’m back at square one, just seeing what I can do, and attempting to block out the idea that one day these songs may actually get heard.

Do you think there’s much truth or value in the concept of the tortured artist: that people who face tragedy or mental illness make better art or tell better stories?

I think that’s probably true on some level and bullshit on some level.  That’s actually a tough one to answer.  Perhaps feeling pain on any level breeds the kinda introversion that leads to spending a lot of time alone making shit.  But you’d also think that there’s gotta be a way to just be creative without the baggage.  Yeah. I really don’t know.  Most of the musicians I like are insane, so there’s that. 


For me, one of my favorite lines of yours ever is in ‘Homemade Mummy’; “Take the brain out/leave the heart in.” Do you have favorite lines you carry round with you, that you’re particularly proud of or feel meaningful? What are they? 

Sure I guess, it’s hard to kinda think of them off the cuff, and I really only have the most recent stuff logged in my memory.  I like “even his prize horse rides a wolf into battle”, from ‘Tuff.  I kinda like some of the 3rd verse of Shrunk that you mentioned. I always liked “armchair hater, I wouldn’t piss on your coffin, but when I see your picture I draw dicks on it.”  I guess I like the ones that summon up some real imagery, lines that make a picture in your head.  I’d have to listen to the songs to really pull more. 

The Hey Kirby tour’s over now. What’s next for you?

I have a few collaborative projects in the works, but it’s probably a bit early to announce any of them.  Beyond that I’ll be finishing up original music for the feature Infinity Baby right when I get home.  Other than that I just stay working. I never really know what project my days work will go towards, I just chip away and see if I can come up with something cool, a line, a beat, whatever.  Just stay busy. 

Histories

The Late President of Protest

Folk singer-songwriter Phil Ochs gave voice to the righteously rebellious 1960s, while trying to keep his depression in check.

There’s no place in this world where I’ll belong when I’m gone
And I won’t know the right from the wrong when I’m gone
And you won’t find me singin’ on this song when I’m gone
So I guess I’ll have to do it while I’m here

 – “When I’m Gone,” Phil Ochs

“I just can’t keep up with Phil,” Bob Dylan once said of his friend and fellow folk singer, Phil Ochs, who was just one year Dylan’s senior. The two met in the early 1960s New York music scene, cementing their fates—and often, their respective legacies—as forever intertwined. In the 2010 Ochs documentary, There but for Fortune, cultural commentator Christopher Hitchens noted that while anyone can like Dylan, many do not even know who Ochs was.

By the time he was 30, singer-songwriter Phil Ochs had written hundreds of protest anthems including “I Ain’t Marching Anymore,” which covered by folk heroes Arlo Guthrie and Richard Thompson, and “Love Me, I’m A Liberal,” which was given the punk treatment by performers Jello Biafra and Mojo NIxon. Joan Baez, Billy Bragg, and even Pearl Jam have all paid homage to Ochs’ powerful legacy by playing his songs. When Ochs died at age 35, the size of the FBI’s file on him resembled a novel.

Ochs was no ordinary rebel. The El Paso, Texas-native was born in 1940 to a homemaker mother and physician father who struggled with depression and mania. To escape his volatile home life—his joyless mother, a nouveau riche Scottish immigrant, was said to refer to her children as “you stinking Americans”—he devoured stories of lone heroes found in Westerns. One of his favorite movies was Rebel Without A Cause.

Ochs and his brother, Michael, were always aware of how their family history might impact their health as adults. Phil was prone to depressive symptoms and mania from his youth. In There but for Fortune, Michael notes that he and Phil had an unlikely (and they hoped, unnecessary) brotherly pact to never commit the other, no matter the circumstances.

“The source of our liberty…”

After high school, Phil Ochs enrolled in the journalism school at The Ohio State University and worked for the school newspaper, though he was later demoted for his fiery political columns and eventually dropped out of college—but not before winning his roommate’s guitar on a bet that John F. Kennedy, not Richard Nixon, would win the 1960 election.

As he moved into adulthood, Ochs maintained a reputation as something of a hothead, prone to alienating loved ones. But he was also considered a brilliant, rising star who attracted plenty of likeminded rabble-rousers. “A democracy should turn you on,” he enthused of political activism.

He would stay up late reading headlines from which to draw songwriting inspiration. Some of his most famous song lyrics were ripped straight from the headlines or inspired by his fellow anti-war artists. “Outside of a Small Circle of Friends,” for example, was inspired by the 1964 murder of Kitty Genovese, whose neighbors heard her screams for help but did nothing to intervene. Lamenting the violence in response to the 1963 civil rights protests at the Birmingham, Alabama jail, he wrote “Talking Birmingham Jam.” “The War Is Over,” inspired by Beat poet Allen Ginsberg’s declaration that the war would end if enough people proclaimed it over and finished, became an anti-war anthem.

He also penned popular songs such as “Love Me, I’m a Liberal,” a biting satirical critique of the lip service some supposed progressives give to causes while doing little to actually support them. Some songs were more personally motivated, such as “Jim Dean of Indiana,” a heartbreaking tribute to one of his cinematic heroes, James Dean.

The writer Richard Just notes in a recent piece for The Washington Post that Ochs is the folk singer all Americans need in a time of sociopolitical upheaval. “As we enter the Trump era, and as a new mass protest movement begins to take shape,” he explains, “[Ochs’] music would be worthy of a revival.”

“Taken together, his songs offer an exceptionally compelling tour of the deepest questions currently confronting liberals—questions about democracy, dissent and human decency in a grim political age,” Just adds.

Despite the birth of his only child, daughter Meegan, Ochs continued his restless touring and demanding performance schedule throughout the early and mid-1960s. Those who knew him best said he never turned down a benefit request, eager to play in support of worthy causes—and often, because those offered a larger audience than commercial shows. As the early ‘60s wore on, he played the landmark 1964 Newport Folk Festival and inked a deal for a new album. Somewhere along the way, England’s Melody Maker magazine dubbed him the “president of protest.” (Bob Dylan was named the king of the same.)

A 2017 Pitchfork review of Ochs’ 1965 album, I Ain’t Marching Anymore, explains the songwriter’s ongoing sense of urgency. “To Ochs, there was no time for subtlety,” explains editor Stacey Anderson. “He sets his agenda firmly in the title track—an opener that rouses and incites despite a pallor of exhaustion, regret, and fear.”

To Ochs, there was no time for subtlety.

Ochs did derive some satisfaction from his tumultuous but satisfying personal life. He loved being a father, his estranged widow Alice explains in There But For Fortune. “It was safe to love a child,” Alice noted of Phil’s past familial pain and his ability to parent so happily in spite of a fractured relationship with his own mother and father.

Fatherhood did not dampen his political activism; if anything, it kept him fighting ever harder for social change. In 1968, along with his perhaps more famous political prankster co-founders, Ochs helped start the Youth International Party, the so-called Yippies who made headlines thanks to the street theater antics of Abbie Hoffman and Jerry Rubin. When he was called to testify at the trial for the Chicago Seven accused to inciting riots during the anti-Vietnam protests at that year’s Democratic Convention, Ochs recited the lyrics to his protest anthem, “I Ain’t Marching Anymore.” (The judge wouldn’t allow him to actually sing it in the courtroom.)

The album cover to Ochs’ “I Ain’t Marching Anymore”

Even as he began battling symptoms of mental illness in earnest, Ochs didn’t want to give credit to his mania for any of his songwriting or performance success. Still, according to Marc Eliot’s 1979 Ochs biography, Death of a Rebel, Ochs wrote all the songs for his 1969 album Rehearsals for Retirement in just two weeks.

There are debates about what tormented Ochs as the ‘60s waned and the ‘70s approached. When you believe your generation can change the world and that momentum falls short of the radical revolution you anticipate, how do you continue to move forward? It wasn’t a struggle unique to Ochs but one shared by many of his contemporaries. Still, the promise of the 1960s counterculture seemed to hit Ochs harder than most when some of the highest goals for human rights and equality still seemed out of reach.

As it was for so many, the 1970s were hard on Ochs. And as is so often true, it’s hard to know what caused Ochs to start experiencing the symptoms of bipolar disorder.

As his health deteriorated and his career seemed uncertain, Ochs took a series of what he thought might be restorative trips to other parts of the world, including several countries in Africa, where he was among the first Americans to record on the continent. While in Tanzania, robbers mugged and beat him one night, his vocal chords crushed in the assault. The random violence, while physically devastating, had a darker psychological impact on an already shaky Ochs, who swore his assailant was a CIA operative. (His fears were not totally unfounded; his friend, the Chilean protest singer Victor Jara, was brutally murdered by dictator Augusto Pinochet’s army in 1973.)

As Ochs’ voice partially healed—he never regained the high end of his vocal range—he continued to perform and record sporadically but became increasingly paranoid and was never able to shake the demons that began to haunt him daily. He took on an alternate identity, John Butler Train, and became ever more divorced from the man he’d once been. He hung himself in 1976, leaving a rich legacy of music and activism to inspire the generations to follow.

In “That Was the President,” Ochs wrote of President John F. Kennedy’s assassination what could also double as his own eulogy:

Here’s a memory to share, here’s a memory to save
Of the sudden early ending of command
Yet a part of you and a part of me is buried in his grave
That was the President and that was the man

 

Health & Fitness

A Mighty Blow Against Sleep Apnea

By teaching them to play the didgeridoo, Alex Suarez helps fellow sleep apnea sufferers breathe easier.

Alex Suarez’s wife had been enduring his snoring for more than a decade. But it was one particular night in 2000 when his snoring–and breathing–stopped that really concerned her. So much so, she pushed him out of bed.

Alex Suarez.

Suarez, then a 34-year-old martial arts instructor, was diagnosed with sleep apnea, a chronic sleep disorder in which a person’s breathing shallows or stops for seconds or minutes, often dozens or even hundreds of times per night. In addition to the obvious grogginess, sleep apnea can increase a person’s chances of heart disease or failure, high blood pressure, stroke, diabetes, and obesity.

Then, as now, the primary treatment options for sleep apnea were surgery or use of a breathing device called a CPAP (Continuous Positive Airway Pressure), which uses mild air pressure to keep a person’s airways open by way of a steady stream of air delivered through a face mask.

Surgery wasn’t an option for Suarez’s condition, so he tried the CPAP. But his experience was anything but restful.

“The masks of the CPAPs were very new, very big, and very uncomfortable,” he says. “I developed a rash on my face, and the machine made a lot of noise.” He laughs. “My wife was close to a nervous breakdown because it was so noisy.”

To make matters worse, Suarez found he kept pushing the mask off his face while still asleep, reducing the device’s effectiveness. “This was a problem,” he says.

Suarez is the founder of Asate, a specialized physical therapy company based in northeastern Switzerland that uses a customized didgeridoo instrument to treat snoring and sleep apnea. Suarez’s inspiration for the company stems from his early apnea treatment frustrations, guided by an odd but serendipitous set of circumstances.

After two weeks’ trial with that detested CPAP, Suarez gave the machine back to his doctor and asked about alternatives. “He told me, ‘Worldwide, there are no alternatives.’”

Aware of Suarez’s martial arts and physical fitness expertise, however, the doctor indicated he was open to suggestions. Together they agreed that if Suarez could come up with an appropriate alternative treatment, his doctor would assist him with some self-experimentation.

Suarez had the most common form of sleep apnea called obstructive sleep apnea. With obstructive sleep apnea, when the muscles and collapsible walls of soft tissue inside a sleeping person’s throat relax, they block the airway, reducing oxygen to the lungs and blood flow to the brain. These muscles and tissues can become especially weak as we age or when we gain weight.

At his doctor’s instruction, Suarez went on the lookout for remedies that might help firm up those throat muscles and tissues, thereby eliminating the collapse and blockage problem. By chance, on a break during one of his martial arts seminars, one of Suarez’s students began playing a didgeridoo, a long wooden wind instrument originally developed by indigenous Australians that emits thick, low, vibrating tones.

This Australian wind instrument was the key to curing Suarez’s sleep apnea.

“I was observing him and saw that his throat was moving when he was playing, and when he was breathing especially,” he says. Suarez made a few inquiries to professional didgeridoo musicians and instructors, but none reported improvements in sleep or snoring from their playing. A few, in fact, confirmed they did indeed snore or have mild sleep apnea.

Suarez had never been particularly musically inclined (“I was a sporty person,” he says) and had never before played the didgeridoo. But he had always been an autodidact at heart. And despite his lack of musical talent and all the evidence to the contrary, there was just something about the instrument and its physical mechanics that stuck with him.

“It was clear that [playing the didgeridoo] doesn’t work traditionally,” he says, “but for me the idea was that I could perhaps use it more like an exercise, like a workout.” Suarez got to work.

Through trial and error, he gradually developed a combination of exercises and a particular way of playing the didgeridoo that seemed like they had the potential to engage and strengthen the appropriate upper respiratory muscles and tissues. After using this method for 20 minutes every day, 5 days a week, for three months, he returned to his doctor for assessment. Thanks to his homemade throat workout routine, both his snoring and sleep apnea had cleared up.

Suarez’s doctor was perplexed but pleased. He couldn’t argue with Suarez’s results, but he also couldn’t see how blowing into a tube could really make that kind of difference–or why any old wind instrument wouldn’t do as well.

I’m living in Switzerland, so the doctor asked me: Why didn’t you use an alphorn?

Suarez says with a laugh, “I’m living in Switzerland, as you know, so the doctor asked me, ‘Why didn’t you use an alphorn?’” Unlike other wind instruments, however, the particular rhythms and methods of playing a didgeridoo may, it turns out, more directly target and tone the specific muscles or combination of muscles underlying the sleep apnea problem.

The University of Zurich got wind (as it were) of Suarez’s discovery and reached out to him about participating in a randomized, controlled study to determine if his was a unique case or if his success could be repeated. Although the study was small, the results on sleep apnea outcomes were encouraging. The university, in conjunction with Swiss rehabilitation center Zürcher RehaZentrum Wald (formerly Zürcher Höhenklinik Wald) published their findings in British Medical Journal in 2006. The University of Zurich has since completed an additional study in 2014, and Suarez is currently working with the University of California, Los Angeles, on another study of Asate Training.

A participant in a sleep apnea study practices the didgeridoo.nea

Suarez is quick to emphasize that both Asate’s custom training method and medical didgeridoo instrument–which is designed to optimize musculature exercises, rather than sound–are vital elements in combatting snoring and sleep apnea specifically, as opposed to traditional didgeridoo playing. He also contends that, despite the University of Zurich’s original conclusions, the use of circular breathing (a complex technique often associated with the didgeridoo) is helpful but not necessary for success. After all, he points out, he was able to improve his own sleep apnea with no knowledge of circular breathing.

Suarez could never have imagined more than a decade ago, having almost literally snored himself and his wife out of bed, that having sleep apnea could change the direction of his life–and potentially healthcare–so dramatically. He’s both happy and hopeful that someday his condition and self-experimentation may offer patients like himself another widespread non-surgical alternative to the CPAP. To that end, Suarez and Asate are currently working on a new product to scale their therapy training to a wider global audience, which they plan to launch later this year.

Profiles

Beating Anxiety With Drumsticks

For Patti Niemi, becoming a professional symphony percussionist meant first coming to terms with her anxiety.

When percussionist Patti Niemi plays, you hear it. Down in the pit, among the San Francisco Opera Orchestra’s other musicians, there is no hiding the sound of her hitting the snare drum, bass drum, glockenspiel, marimbas, bells, or chimes… let alone the calculated crash of her favorite instrument, the cymbals.

She’s loud, a fact she revels in. “There’s just nothing like playing with 75 other instrumentalists, a whole host of singers, and still being the loudest one in the group,” says Niemi. But it has its drawbacks.  “One of the hard things about being the loudest, however, is that once I play a crash there are a couple of seconds when I can’t hear much of anything else. So if I have to play a number of loud crashes in a row, the sound gets pretty overwhelming.”

Patricia Niemi’s anxiety almost cost her a career as a symphony percussionist.

Loud crashing noises make most people anxious, but not Niemi. Banging stuff is more than her passion: it’s her life. But for a person who suffered crippling anxiety all her life, the auditioning process to become a professional percussionist almost ended her career before it started. It was only by accepting her condition that she was able to finally achieve her dreams.

Petite and dressed in beige slacks and a basic black top, Niemi strikes a much subtle note when she’s not performing. On first impression, it’d be easy to mistake her for a librarian or some type of research scientist. But for decades, Niemi has commanded audiences’ attention by engaging in “sanctioned banging.” The notes she plays range from thunderous to the faintest tremble, and they always require the sort of precision that would make most mortals drip with sweat.

The cover of Sticking It Out.

In her 2016 memoir Sticking it Out: From Juilliard to the Orchestra Pit, Niemi describes one particularly tricky xylophone solo as “five minutes of running my arms up and down the xylophone as fast as I could and hitting little wooden bars that were only an inch and a half wide. It was a high-wire act that demanded to be executed perfectly … any wrong note would linger like a fart in church.”

This does not seem like an obvious fit for someone who was so anxious as a child that she lined up all the kitty statues in her pink bedroom at right angles, folded her garbage before setting it in the trash, and, in third grade, feigned illness three Mondays in a row to avoid playing a simple alphabet game in music class.

“Mr. Vaglio would go around the circle and if your letter was A, you’d have to say ‘accordion’ or anything music related,” Niemi tells me in a café near the War Memorial Opera House, where she regularly performs. “I was like, no way. I’m going to fail at this. I didn’t go in but he waited until I got back. He knew I loved music. I lost on the first round and I was just devastated.” (She failed to think of a word for “g,” glockenspiel not yet a part of her daily vocabulary.)

Despite this early case of stage fright, by age 10, Niemi was determined to play drums. Initially drawn to them as a surefire way to stand out, she later discovered that she intuited the instrument that best suited her natural skills. A music aptitude test that year placed her in the top one percent for rhythm and the lowest percentile for melody.

From then on music and anxiety were constants in her life. But, as Niemi writes, “at that point, music didn’t cause me any more anxiety than simply waking up in the morning and being a person. I was always anxious.” These two threads would continue to run through her life, sometimes parallel, and at more painful points, fully entangled.

Throughout elementary school and on into high school, she loved practicing and the challenge of making her brain think in a completely different way. To her, the hours spent playing never felt like a sacrifice: it felt like an addition. Music was her passion and soon the pursuit of her end goal–joining a professional orchestra–became as much of the fun as the music itself.

Niemi plays with the San Francisco Opera Orchestra.

“For years, the first thing on my mind when I woke up was, ‘how can I move closer to my goal of winning an audition?’” says Niemi. “It was gratifying to know that I had all the pieces of the puzzle, and I just had to figure out how to put them together.”

One of the puzzle pieces was getting into a music conservatory. After high school, Niemi entered Julliard, one of the world’s most prestigious programs. It was during her second year there that she experienced her first full-blown bout of performance anxiety. She had gotten a gig with a local freelance orchestra to gain experience. At her first rehearsal, she begged to play a famously difficult snare drum part in Capriccio Espagnol, an orchestral suite based on Spanish folk melodies, composed by Nikolai Rimsky-Korsakov in 1887.

In the piece, the other instruments fall silent as the snare drum goes from a loud roll to a very, very soft one. A teacher had described this moment to her as feeling like “you’re standing there with your pants down.” At that totally exposed spot, her hands betrayed her. “They shook so wildly, jerked so unpredictably, that I had to lift my sticks above the drumhead to keep them from making random swipes at it,” writes Niemi in her memoir. Everyone, including the string players who twisted completely around in their chairs, turned and stared at her, wondering why she wasn’t playing. The conductor snarled, “Play, Play.”

It was mortifying. I was so embarrassed,” Niemi tells me, hugging her knees to her chest. “The worst part for me was I didn’t get a warning. All the way through high school and my first year at Julliard, I didn’t have nerves. I mean, I had anxiety my whole life, but as far as performing, performing was fun. I don’t know how that switched so badly.”

The next day, she went to the doctor and got a prescription for Inderal, a beta-blocker that curbs the physical signs of performance anxiety. Now she could swallow two 20-milligram tablets and her hands wouldn’t shake and her heart wouldn’t pound. Far from turning her into a Zen master, Niemi writes “the effect was to pull me off the ceiling and prop me onstage with a heightened yet tolerable awareness of the performance I was about to play.”

Known today as a common prescription for musicians and other performers, Niemi took the drug in secret, ashamed to rely on any medication. At the time, she felt like taking a pill was cheating on a level akin to professional baseball players taking steroids. The outward attitude among her fellow students was that musicians should muscle through any performance anxiety, that learning to slay those fears was part of the job. “You’re supposed to be brave and be able to say, ‘Sure, I can do this,’” says Niemi. “But I couldn’t.”

You’re supposed to be brave and be able to say, ‘Sure, I can do this.’ But I couldn’t.

She had found a way to steady her hands but her mind still rattled and hummed with worry. As she saw it, her situation came down to a stressful math equation: the number of orchestras divided by the number of percussionists. There are around 50 orchestras in the U.S. that pay a living wage, three or four percussionists per orchestra, and around 75 competitors per audition for one opening. “There’s just no guarantee,” says Niemi. “If you work really hard in medical school, you’re going to become a doctor; you’re going to get a job. If you work that hard to win an audition, you still might not.”

In the weeks leading up to an audition, Niemi would sit alone in a room and practice eight to 10 hours a day. This was one of the gifts of anxiety, she says. Where others may have struggled to maintain that level of self-discipline, her worries propelled her to practice all the time. At Julliard, after hours of practicing and very little sleep, she once hallucinated flies hovering and landing on her drum pad. When she realized that they weren’t real, she was thrilled. She took the hallucination to be clear evidence of her diligence.

Niemi banging away some anxiety, xylophonically.

Her anxiety reached its apex in 1996, four years after landing her spot in the San Francisco Opera Orchestra. That year, Niemi had a chance to audition for the more prestigious Metropolitan Opera Orchestra. In the weeks leading up to the audition she felt like her body was constantly vibrating. She wanted to cry all the time. She couldn’t sleep or eat. In the end, she didn’t take the audition.

“I would have liked to keep taking auditions and seen how far I could get,” says Niemi. “But auditions are the worst of it, so I just stopped. I didn’t take anymore. … It was really hard at first, because all I had ever wanted to do was be a musician. To get to the point where I said I can’t go further because of my nerves… that was painful.”

Niemi started taking Prozac during that period and continues to take it today. She says the drug was “a real lifesaver,” but she still struggles with anxiety. “I’d love to not be an anxious person, but it teaches you compassion for other people… We don’t always behave well, but there’s usually a reason — a lot of it is anxiety. But maybe that’s just my lens,” she laughs.

I’d love to not be an anxious person, but it teaches you compassion for other people.

Niemi hopes that talking about her experiences will help others feel less alone and spare younger musicians some of the guilt and embarrassment that she felt. “I think it’s a gift to younger students for me to say this is what I had to do. That would be great if you don’t have to go down that path, but don’t feel bad about it.”

After devoting more than four decades to perfecting the art of banging on things, Niemi’s performance anxiety has not diminished much. And yet, as a professional musician, she puts herself in the position to be judged over and over again: something that triggers the flight response in most of us. Even with all that stress, Niemi considers it a great privilege to be part of such a beautiful collaborative effort.

“The sound that a full symphony orchestra makes is the most thrilling sound I’ve ever heard,” she says. “Standing in the middle of all those musicians and adding to that sound is truly a joy.”

Histories

Woody Guthrie And The Magicky Tree

How the famous American singer-songwriter found new ways to hope after his Huntington's diagnosis

In October 1952, Woody Guthrie, the great troubadour of the downtrodden, wrote a rallying cry for his own life:

This world it’s hit me in my face.

It’s hit me over my head.

It’s beat me black and blue and green,

But still tho’ I ain’t dead. …

I ain’t dead! I ain’t dead!

I ain’t dead! I ain’t dead!

I ain’t dead, folks.

I ain’t dead! I ain’t dead!

I stumble an’ I fall and roll and crawl

In thornybushes like I said.

I’m all bawl’d up and all fowled up

But still folks, I ain’t dead. …

A month before he penned “I Ain’t Dead,” Guthrie had received a devastating diagnosis, one that he’d feared his entire adult life: he had Huntington’s chorea, the same illness that led to his mother’s institutionalization shortly before his 14th birthday.

A defender of union workers and fighter of Fascism, Guthrie had made a habit of staring down trouble. Now he was taking a stand against the trickiest adversary he’d ever faced, a defective sequence of his own DNA.

Woody Guthrie, 1940s

Woody Guthrie, 1940s.

Now known as Huntington’s disease, the name “chorea,” or dance, described the way many with the disorder involuntarily writhe, twist, and jerk their limbs in constant motion. The inherited disease causes nerve cells in the brain to break down, often leading to uncontrolled movements, and changes in behavior, emotion, and cognition. These symptoms appear gradually, and progressively worsen. There is no cure or treatment to stop the disease. As Ed Cray describes it in his biography, Ramblin’ Man: The Life and Times of Woody Guthrie, “Huntington’s chorea was a sentence of death by slow degrees.”

For the rest of his life, even after their divorce in 1953, Woody’s second wife, Marjorie Mazia Guthrie, looked after him. His eldest son, Arlo, once explained that “my mom and dad had an obvious love for each other that … extended before their marriage—through it—and beyond it.” 

In less romantic terms, Marjorie wrote to Woody’s younger sister, “I know from years of living … that there is no one, not anybody who would take on this responsibility if I don’t. And I feel that I cannot really live a happy life unless I know that Woody is being attended to.”

Guthrie and his second wife, Marjorie, who cared for him even after their divorce.

Guthrie and his second wife, Marjorie, who cared for him even after their divorce.

With Marjorie at his side, doctors told them that Woody “was going to be very sick and the situation was hopeless and helpless. … he was going to be … a vegetable at the end of his life.”  They advised her to tell their children that Woody had died, so they wouldn’t see him deteriorate. Marjorie dismissed the recommendation as “crazy.”

Determined that Woody “feel that he is still a part of life and living,”  Marjorie piled the three kids in the car on Sundays and drove them from Howard Beach, Queens, to the Greystone Park Psychiatric Hospital in Morris Plains, New Jersey, where Woody lived for nearly five years.

Set on an 830-acre property, the massive 19th-century building housed more than 7,000 patients. “I remember pulling up to Greystone on this big avenue, like a promenade almost,” said Arlo in an interview. “As a kid, I thought it was an entire city … which it really was, so I wasn’t that far off.”

Woody and Marjorie tried to maintain as much of the “joyousness that Woody had with kids” as they could, even on the hospital grounds. Each week, the family would picnic together under the leafy tent created by the sweeping branches of a large tree. 

“It was like a weeping cherry, or some odd kind of tree that you couldn’t really see through in the months when there were leaves on it,” recalled Arlo. “We would just climb in those things and stay there for hours.”

“My father named it the ‘magicky tree,’ and we all loved believing it was,” writes Nora in the foreword to Woody Guthrie’s Wardy Forty: The Interviews. “It took us so far away from the reality below. How smart of them to create something so special for us. A fantastical setting that could relieve us of so much fear and get us through the afternoon.” She told Cray, “We were literally able to transcend and go higher than the disease. We were up in the tree this whole time looking down at our parents hugging, kissing, and sharing.”

“We were literally able to transcend and go higher than the disease.”

Eventually, the once ominous Greystone became everyday. “It was part of our life and that’s what we did,” said Arlo. “It was just routine.”

In between his Sunday reprieves, Guthrie wrote letters to Marjorie and his children, often describing the ways he kept busy at Greystone—playing guitar and harmonica for the other patients, reading out loud from the Bible, and helping serve the meals. As he wrote at the end of one letter in 1956, “I ain’t dead quite yet.”

As normal as they managed to make it, Greystone was still a hospital. At some point, Marjorie decided it’d be better to bring Woody home on Sundays. The kids could stay around the house and play with friends and Woody could have visitors. Nora remembers these afternoons as “informal hootenannies.” Pete Seeger, Ramblin’ Jack Elliott,  Guthrie’s protégé and eventual mentor to Bob Dylan, John Cohen, a member of the New Lost City Ramblers, and other friends would come over and play music for Woody. “He really seemed to enjoy this,” writes Nora. “Especially when they played him his own songs.”

Robert and Sidsel (Sid) Gleason also hosted Sunday hootenannies for Guthrie in their fourth-floor apartment in the suburb of East Orange, New Jersey. The couple, who lived just 40 minutes from Greystone, would pick Woody up and drive him back to their place, where his family, friends, and fans would gather.

In 1960, Guthrie’s legend was growing among devotees of the folk music revival. When word got out about the weekly get-togethers at the Gleason’s home, strangers—sometimes 20 to 30 at a time and from as far away as the West Coast—started to show up at the Gleason’s doorstep to sing and play guitar for their hero. Among the acolytes who made the pilgrimage in early 1961 was a 19-year-old Bob Dylan. “I was there as a servant, to sing him his songs,” explained Dylan. “That’s all I did. I was a Woody Guthrie jukebox.”

Guthrie and Marjorie facing Huntington's together.

Guthrie and Marjorie facing Huntington’s together.

“I’m telling you, that was the wildest time,” said Sid. “There was one of the guys that played washtub bass, and between that and the guitar, it was a pretty wild affair. The people down on the first floor were just about crazy, ’cause it made such a funny noise downstairs.” Arlo would join in, too, playing the three-quarter size Gibson his dad bought him for his fifth birthday some eight years earlier.

To minimize the racket, the Gleason’s eventually limited the parties to five or six guests. In her big cast iron kettle, Sid would cook Woody’s favorite dinner for everyone, “a ‘cowboy stew’ of beef heart, liver, kidney, garlic, onion, and canned tomatoes served with hot biscuits.”

Marjorie remembered that “Woody would want to touch the guitar and play it and his hands were uncontrolled and he couldn’t play it well from the Huntington’s chorea, so he would just sort of hold it lovingly and strum it very awkwardly … so he felt like he was still part of it.”

“All a human being is, anyway, is just a hoping machine…”

Even when he was no longer able to speak or move of his own volition, Guthrie still held on to life. By the beginning of 1964, Woody could only communicate by pointing to cards that Marjorie had labeled “yes,” “no,” or question mark. When he could no longer point, she “devised a simple system of one or two eye blinks for yes and no.”

During this time, she would occasionally ask him if he wanted to live and he would answer that he did. “‘I guessed his desire was to see what was going to happen next,’ Marjorie explained. When she asked, ‘What do you do here all day, think about the past?,’ he would nod. ‘Do you worry about the future?’ Guthrie would smile and shake his head. Memories, she guessed, were enough to keep him going—that and ‘his stubborn sense of pride.’”

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One of Guthrie’s most iconic photos.

In 1946, years before his final diagnosis, but well after many other adversities, Guthrie wrote, “I use to wonder if it wouldn’t be better just to haul off and quit hoping. Just protect my own inner brain, my own mind and heart, by drawing it up into a hard knot, and not having any more hopes or dreams at all. … and yet, … there are certain good times, and pleasures that I never can forget, no matter how much I want to, because the pleasures, and the displeasures, the good times and the bad, are really all there is to me. … The note of hope is the only note that can help us or save us from falling to the bottom of the heap of evolution, because, largely, about all a human being is, anyway, is just a hoping machine …”

Guthrie may have accepted the fate of his disease, but his hoping machine never seemed to quit. Even near the end of his life, Guthrie had “twinkling eyes and [a] mischievous grin, releasing us all to live our own lives completely and wonderfully, taking each day and each situation as it comes,” writes Nora. “Although Huntington’s disease was his own personal trial, he lived with the disease, but he never became Huntington’s disease. His understanding of life came through loud and clear.”

 

Profiles

Blind Rhythm And The Battle Rapper

After malpractice took his vision away, Kennedy Ayikwao regained his confidence rapping in the streets of Ghana.

Like any young, aspiring rapper, Kennedy Ayikwao oozes confidence. He’s not shy to point out he inspires himself; he brags that he will win a national music award for his work within a year.

His raps are about his favorite subject: himself. He raps about his life, his struggles, his ambitions, and his love for his art. Surrounded by friends and fans at his university campus in the West African nation of Ghana, Ayikwao–whose stage name is Kenzey– is most in his element spitting rhymes, rap-battling with a friend to a beat made by a crowd slapping their chests and feet.

Ayikwao puts all the money that comes his way into recording and promoting his music. He jokes that he is living off rice so he can pay to get his latest single out there to the masses.

So in most ways, Ayikwao is the quintessential rapper. The only difference is, Ayikwao can’t see what’s going on around him. After losing his sight as a child due to a medical accident, the University of Ghana student, now 22, uses rap to talk about his experiences as a sight-challenged person living in Africa, and to speak out for the vulnerable in his society.

Born in the capital Accra, where he now studies, Ayikwao started losing his sight when he was four. It was a gradual, and unfortunate loss, he says. At four, Ayikwao’s family first noticed he had issues with his sight when his father handed him a toy airplane. He was unable to locate it. 

Ayikwao’s family took him to the hospital, where it was discovered there was something wrong with his right eye. He was prescribed a corrective lens, but the prescription was switched, so that the lens meant for his right eye was instead prescribed for the left eye. “Gradually, it affected the sight in my left eye,” Ayikwao says. “It didn’t solve the problem, but rather brought on another problem. That was when [sight] became difficult for me.”

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Ayikwau and his posse of fellow students at the University of Ghana.

As his vision became poorer, Ayikwao fell behind in school, unable to read from the chalk board. He was left back multiple times before he eventually learned to read braille. As hard as days were, though, nights were even more difficult for young Ayikwao. “That was when I felt like the whole world was against me,” remembers Ayikwao. “I couldn’t see in the night. I thought I was the only person with this problem in the whole wide world. I said to myself: why am I odd? Why am I like this?” He felt like his “existence was going to be worthless.”

Depression followed. Ayikwao went through a phase of not wanting to leave the house; he stayed in his room all day, crying. But soon, the shy child realized he needed to pull himself together. He couldn’t spend the rest of his life in a bedroom that was fading away with his sight. When his father bought him a bike, Ayikwao decided to learn to ride it, taking advantage of the sight he still had, while he still could.

“The bicycle kept my mind busy,” he remembers. “I kept roaming as a means through which to get to know places. I used to roam a lot. I was a roaming ambassador!”

When Ayikwao finally lost his sight completely around 2007, he was moved to a boarding school for the blind in the eastern region of Ghana. Eventually, he graduated, and moved on to the University of Ghana in Accra, where he still studies. But life is a challenge; Ayikwao is quick to note the realities of being blind in Ghana.

“I have to make use of those around me,” he says. “I can’t be fully independent.” For example, the cedi–Ghana’s national currency–has not been designed with visually impaired users in mind. “It’s not like the dollar, where there are marks on it to make it possible for visually impaired to identify the amount they have.” You have to show it to someone to check for you to see how much the bill is for.

Luckily, Ayikwao has a right-hand man to rely on, both on campus and on the stage: his manager and fellow student, Alex Kwaku Frimpong. Not only does Frimpong help Ayikwao get by on a day-to-day basis… he helps Ayikwao pursue his life’s major passion, rap.

Kensey and his manager

Kenzey and his best friend and manager, Alex Kwaku Frimpong.

Before he started rapping, Ayikwao was always singing. As a child, he would pick up songs easily, singing boisterously in church and at family gatherings. In 2011, though, he started rapping. At first, he practiced by reciting the rhymes of Sarkodie, Ghana’s most famous rapper, but soon, his friends were encouraging him to come up with original tracks.

As his stage persona, Kenzey, Ayikwao combines English, a local dialect called Twi, and pidgin English to express himself through his music. This year he released a track that details his life history, called ‘I’m A Star’. He sings and raps through it, detailing the inspiration his late mother gave him, assuring him he would one day ‘be a star’.

“My music is about my whole life. It is self-inspired and spirited,” he says. His inspiration comes from the things that have happened to him, and the dreams he has; like a rapping Coleridge, Ayikwao says he sometimes dreams entire songs, then wakes up and puts them down to paper.

His music has been key to empowering him as a sight-challenged student living in Ghana, but Ayikwao wants to do more than inspire himself. He also wants to inspire others to achieve greatness in their lives. He hopes that by creating and performing his music, he will be able to advocate on the behalf of others who are visually impaired.

In Ghana, sometimes a person who has a disability is seen as a punishment from God. Luckily, Ayikwao says these beliefs are changing. “Culturally, [blind people] have not been treated fairly [in Ghana] but education is permeating very fast, so at least it is working, [teaching] people to recognize that me and my kind are not so different from them.”

The future feels bright for Ayikwao. He sees awards in his future. 

“With my music, right now I am very confident that if I get enough support I won’t be far from getting an award next year at the Ghana Music Awards.”

But Ayikwao is also serious about his studies. After completing his political science and philosophy degrees, he wants to study law, with the ultimate plan being a human rights lawyer, keeping his music career going alongside this profession.

Working in human rights will be a way to further advocate for Ghana’s vulnerable, he says. “People get their rights trampled on based on their disabilities,” says Ayikwao. His goal is to change that. He wants his work, both in the studio and the court, to be an “eye opener” in Ghana, changing the way those without disabilities see the blind… and even helping to change the way the blind in Ghana see themselves.