making Easy StreeT &
getting tested for MYOTONIC DYSTROPHY
I couldn't believe how easy the process was this time! After so many years of struggling to learn the recording studio and suffering to make my music, this new record was a piece of cake. Easy Street. "I'm producing the new one myself and it's almost unnerving how smoothly the whole thing is going!" I gushed to my friend over dinner one night in New York City. And it all had seemed easy at the time. Or at least, normal. Or at least, normal back then. I hadn't mentioned to anyone that my relationship with my friend, manager and mentor of 8 years was fracturing and we'd most likely be parting ways soon. And I hadn't mentioned that I'd recently started taking Prozac to help battle a lifelong low-grade depression. And I certainly hadn't told anyone that two weeks earlier I had finally gotten tested to see whether I had inherited Myotonic muscular dystrophy. Other than that, I guess the recording process was going smoothly?
When my dad was 40, he was diagnosed with muscular dystrophy (growing up, muscular dystrophy were the two most serious words in my life). One day his hands began seizing up and hurting after doing yard work, and it eventually became so painful and strange that he went to see a doctor. If people have heard of muscular dystrophy, it’s usually because of the Jerry Lewis Telethon (which last aired in 2014), during which unbearably young kids in wheelchairs helped raise money for research. As a doctor once told me, "Kids in wheelchairs are the best at raising money for charity." Those kids have Duchenne muscular dystrophy and I could spend a whole day telling you about how terribly sad that disease is. However, my dad had been diagnosed with Myotonic DM, a genetic illness that usually doesn't reveal itself until later in life. Its symptoms are highly unpredictable person-to-person and can range from muscle stiffness to the inability to walk or breathe. It can even affect your thinking and emotions. I just recently learned it’s the most common form of muscular dystrophy, which felt strange to me, because when I was growing up none of my friends had heard of muscular dystrophy, so it was hard to explain my dad’s condition. And so, usually, I just didn’t explain it.
Muscular dystrophy is hereditary and worsens with each generation, but my dad didn't know anybody in his family who were afflicted with it or had shown any symptoms. My dad was blindsided by the diagnosis. I was very young when he was diagnosed and I've only ever known him as the man struggling with the disease. But like all fathers, he had a whole lifetime before his kids. In his healthiest years, my dad had been a great bicyclist, leading bicycling tours all across America and Europe. He was a wonderful woodworker, as well as a songwriter and guitar player. He also carried a small men’s leather purse most of his life. He called it a bag.
After being diagnosed, my dad's abilities slowly began to fade over time. Muscular dystrophy is a degenerative (fancy word for "it continues to get worse") condition where the muscles stop building and begin to weaken and waste away. In case it isn't clear, muscular dystrophy sucks. The DM affected my dad's fine motor skills, making it hard for him to use his hands for simple tasks like writing with a pen. He could no longer do woodworking or make his fingers hold the chords on his guitar strings. DM challenged his ability to walk and his days of bicycling were suddenly a thing of the past. It affected his ability to speak and be understood. People sometimes guess he had a stroke because his speech can be quite slurred when he's tired.
To my dad's amazing credit, he never wanted the disability to get in the way of his life. He continued to adapt and persevere. He went back to school to get his master's degree and switched into a career in computers and web design. He couldn't play guitar anymore, but he became an avid member of his synagogue choir. He had a hard time walking, but he never stopped. Even when maybe it might have been a good time to try a wheelchair or ask for help, my dad was always intent on doing things himself. Because of that, each member of my family has a great collection of stories about being with my dad when he’d fall down. The time Dad came to Boston for my college graduation and we got stuck walking in the middle of an unannounced parade through Boston Common and he fell down. The time Dad took my teenage sister to a rally on the mall in Washington, DC and walked all day, making her very proud, but then he fell down and skinned his knee. He shunned the ambulance when they came and tried to force him in. He wouldn’t go. The time Dad was going to an Orioles game and had to park the car far away from the ballpark and while walking into Camden Yards he fell down and hit his head and had to go to the Orioles Nurse Station. (He got bandaged up and still made it to the game to enjoy a Coke and keep an airtight box score from the 3rd inning on.) My dad was never seriously hurt by these falls. They were scary, but he always got up. Most importantly, his man purse was never damaged.
In college, I learned there was a 50% chance I might have inherited DM. Fifty percent. Flip a coin. Are you feeling lucky? This fact haunted me throughout my young adult life. So while most people were doing keg-stands and late-night partying in college I was... well, still doing those things, but in the back of my mind there was always the faint whisper of what my not-so distant future could look like. Everyone has normal fears about the “horrors” of eventually turning into their parents, but I had personally watched my dad suffer and make sacrifices due to DM. I didn't have to imagine what my life would look like with DM. How long will I be able to shake someone’s hand? How long will I be able to play the guitar? How long until I start carrying a purse?
My family rarely talked about my dad's illness (he referred to it as "my disease"), and I understood very little about what I was staring down. So, I avoided it; pushed it down deep inside and tried not to think about it; went about my daily life; struggled with depression; wrote songs and toured like mad. For years, I tried avoiding DM, but as I got closer and closer to the age my dad was when he starting noticing symptoms, the anxiety grew and the depression spread. After lots of therapy and the overwhelming support of my amazing wife, I finally decided that, for me, there was more power in knowing whether or not I had DM.
So last winter, I bit the bullet and finally went to Columbia University Department of Neurology in New York City to meet with a specialist. After a quick consultation, I gave blood to start the DNA testing process. It was simple enough, not so dissimilar from a routine check-up, but the gears had been put into motion; I was going to find out what was in my body, and soon. I don't remember sleeping that night. The next day, I went into the studio in Brooklyn to start recording my new album, Easy Street.
This was the first album I’d be producing myself. It was an undertaking that I was excited about it, plus, as mentioned, it was going "soooo smoothly". But I found my mind drifting while recording. The sessions were colored by the anxiety that at any moment the doctor could be calling with results that could change my life. Nevertheless, I continued showing up to the studio everyday and making music.
Easy Street feels like the first album I made as an adult. My relationship with my longtime manager, friend and mentor was coming apart. We were outgrowing each other. I wasn't the kid I was when he first found me. And then, because sometimes life seems to completely fall apart before it gets put back together, I no longer had a record label. Just before I was about to release the new album through my label, Kobalt, they unexpectedly parted ways with their president and my record was cast aside. This was my fourth album and the fourth time this had happened to me. Did I just have bad luck? Was I bad luck for label presidents? Did this kind of stuff ever happen to Bono?
Just like that, I had lost the guidance of my mentor and the support of my label. Waiting for a life-changing call everyday on top of this was not great. And yes, I'm putting it mildly. At times it was truly terrifying. I put one foot in front of the other, channeled the emotion into the songs, and kept talking to my therapist, who helped me navigate it all. Slowly, I got stronger.
I put those feelings into the music. New songs like "Anyone Who Knows Me" and "Dear Me" deal with finding my place in an adult world, trusting myself and opening up. "Bored to Death" and "Same Old Thing" talk about pushing against the status quo and wanting more. "Good Rhythm" and "American Princess" are about the guilt of living the good life when others are not. "Alcatraz" and "Lost in Paradise" fantasize about running away -- a feeling I was getting quite familiar with while I was making the album.
After several tense, emotional, but also extremely satisfying weeks in the studio, I finished recording my new album. Two days later, my doctor called to say I had tested negative and did not have Myotonic muscular dystrophy. Fade to black.
After my doctor called with good news, I expected to feel a wash of relief over me, but I didn't feel anything. I felt numb. In shock. How do I mentally un-program 20 years of being sure I had a disease that now suddenly I don't have? (Kinda sounds like a song from RENT). I realized just how many times a day I turned a faucet or poured a bowl of cereal or rode a bike through the city, and wondered about my hands and my body. A wash of relief? That didn't begin to cover it.
This could be the part where I tell you how my life has been magically transformed, but it's not that easy. Yes, the test results have certainly had a life-changing affect on me and my psyche, but there have been complications. My dad still suffers from DM and his condition continues to worsen. He is more or less immobile these days, and life for him and my mom is increasingly difficult. My younger brother and sister have not made a decision yet on whether to be tested.
For me, learning about DM has been incredibly empowering. Even just abbreviating “muscular dystrophy” to DM feels like a massive step forward, a clinical shortcut for a disease that will always be in my life but doesn't have to reign terror on it. I've begun having conversations with my dad and discussing DM a little more openly with my family. It's a learning process, but it's getting easier. I've started talking about my dad and DM with my friends, most of whom I had kept in the dark about his condition and my testing. I've become more interested in educating people on the disease and helping other people in all walks of life.
Thinking about how turbulent my life as a songwriter and musician is, I often reflect on my dad. I got to see his resolve and endless determination up close. He fell, but he always got up. Now I fall, but I get up. It’s shaped my journey as an adult. Unlike me and my music career, my dad never had a choice of whether to keep fighting or not. While he may not have confronted his DM verbally, he was willing to confront it in a more quiet way; being brave enough to climb back up to his feet, even in the face of the indignity of his body failing him. Unbelievable.
Listening back to my new album today is interesting. I hear a lot of pain and emotion and anticipation. But I also hear hope. And youth. And soul. I’m very proud to share this story and these songs with you. Please enjoy Easy Street.
A portion of all online sales of Easy Street will be donated to the Myotonic Dystrophy Foundation.
For more information on myotonic muscular dystrophy or to make a donation, visit: