What The Breakthrough in Huntington's Research Means to Me as a Person At-Risk

 From my last visit with dad. 

From my last visit with dad. 

When I first sat down to write this essay, I planned to start off on a positive note, saying, confidently, I’ve always felt hopeful about my future with Huntington’s. After all, one of the joys of being young and ambitious is having a head full of hopes and dreams. But after my dad died, hope started to feel impossible.

I’ll be the first to admit that I’m an incredibly fortunate 25-year-old woman living out my dream; writing in my favorite city surrounded by the best people. But that’s only part of my reality. The other part is my dad died of Huntington’s disease last year and my two sisters and I all have a 50/50 chance of suffering the same fate.

Since discovering my dad’s illness and how it would affect me, I’ve struggled with the whole 50/50 odds. When I’m splitting the check or getting something 50 percent off, I’m psyched – it’s easy-to-do math and a significant discount­– but when it’s my life on the line, it’s not as simple. In fact, it’s one of the most complicated percentages that exists in my world.

I’ve always bounced back and forth between knowing I did or didn’t have HD. I always knew too, I never thought or suspected–  I knew. There were months at a time where I knew that I didn’t have it. Every day I would think, there’s no way. My luck was not that bad. Then, one day, my tune would completely change. I’d think, ‘Of course I have it! All these other people got it, what makes me so special?’ Then when my dad died, I accepted that I wouldn’t play these back and forth games anymore. I would forever, in my mind, know that I had the Huntington’s gene. It’s hard (impossible?) to think you can beat something that so shamelessly took a person who’s supposed to protect you.  


I could put this mental battle to rest and get tested so I would know with absolute certainty, that I did or didn’t have HD. As simple as that sounds though, there’s so much more to it. You can’t just go into a doctor’s office and get a blood sample taken. You have to attend a set of at least three sessions, where you meet with a genetic councilor and a psychologist to ensure you are ready for the results– whatever they may be.

I’ve decided that going through all of this will not help me in any way, shape or form. No matter whether I get back negative or positive results, either will only complicate my life even more. Just think, if I do test positive, it’s like I’m signing my death warrant at 25. If I test negative, then I still have my sisters to worry about. Even though my odds don't effect theirs, I’ve always felt like if I test negative, my sisters have a likelier chance of testing positive. I know this thought process is just straight up wrong, but to me it feels real and daunting.

My reality has always been a bit blurred and skewed thanks to my 50/50 chance. Having this awareness of something so up-in-the-air influences all kinds of my decisions or feelings. Sure, no one has a 100 percent assurance on what their future health looks like, but it’s strange knowing such a definite number that sits right in the middle; not swaying one way or another, for something as serious as an incurable disease. My family aren't particularly lucky (for many reasons) and with someone so in-the-middle, luck feels important if not necessary. The only thing I've ever been able to hold on to is what has happened. And what happened is my dad didn't beat it. So how could I? 

* * * *

As we get older, we all begin to see our parents in ourselves. We start to see their mannerisms and habits manifest. As I approached my quarter-life mark, I began to see in me my dad’s love of music, his fascination with history and his same deteriorating end-of-life stages. Any hope I had been barely holding onto before his death, the jumping back and forth, was totally shattered that April day.

Then in December, something happened that brought back hope. Not just a speck of it either, but an overwhelming sense of it. There was a breakthrough in HD research, the biggest one since isolating the gene in 1992. Researchers studying the drug IONIS-HTTRx announced they were moving forward to the second and final part of the trial after showing promising results.

They had discovered that the drug successfully intercepts the messenger molecule and destroys it before it can create the mutant protein, huntingtin, that causes HD symptoms. Currently people with HD can only get medication to treat certain symptoms. This means the cognitive, psychological and kinetic effects of the disease still lives within the person and can resurface if medication stops. Thanks to this new drug though these symptoms are prevented before they even occur.

Unfortunately this discovery doesn’t help people who have already begun showing signs of HD. For a person at-risk like me though, it is one of the most promising things we could hear besides, "this gene doesn’t exist in your family anymore."


This news completely changed my mentality on what my life could look like. I can have any future I want without worrying about how it will affect my family or hinder my career. A year ago, I made a choice to quit my job and pursue writing full time, understanding full-well that I could lose my ability to think clearly and write before I turn 40. My dad did it all ‘right,’ conventionally speaking. He went to law school, was in the JAG and worked as a Cincinnati magistrate. All was good until he just couldn’t do it anymore thanks to the early stages of HD. Right before his diagnosis, he couldn’t even hold a job as a bag boy at the local grocery store. Thanks to this new drug though, there’s a possibility that I can stop this devastating decline before it ever even happens. It has given me a chance to live my life like everyone else, without the weight of a devastating future dictating my decisions.  

Before this announcement, the only thing I could really cling on to was the thought that I simply do not carry the gene. Now there’s actual options if I do test positive. Even more significant, there’s options if my sisters are positive. Now, no matter whether one of us or all three of us have it, we can treat and fight it if we need to. My family may not be lucky, but we are all fighters.  

The word “incurable” inevitably feels hopeless. Now the at-risk community has actual tangible science we can hold on to for the hope we deserve. This breakthrough gives me and others in my position a shot at a full life. If I do have the gene, I can tackle it head on and fight it the same way anyone else does other illnesses. It’s no cure, but it’s pretty damn close.

 So grateful for my amazing and supportive friends (family?) .

So grateful for my amazing and supportive friends (family?) .

I’m so grateful that this discovery happened when it did. It came at a point in my life when I’ve never felt more aware of my own immortality. By no means does this drug make me feel immortal, but it has brought back a feeling of aspiration that I thought was lost forever. Now I have the opportunity to be like any 25-year-old.  Figuring life out and stumbling along the way. I don’t have to take these falls so hard anymore; thinking I’m wasting precious time I don’t have. I can enjoy my complicated journey and make the much-needed mistakes that happen along the way.

No longer will hopelessness dictate how I feel or what I choose to do. Thanks to this discovery, I will dictate how I feel and what I do with my life– and nothing can stop me.

The No. 1 Thing I Wish I Did Differently In College

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My philosophy on regrets is the common idea that they're a waste of time. Looking back at all the bad choices I've made (and trust me, there's plenty) I'm grateful for every single one. After all was said and done, I was able to look back and learn from the decisions I made. Moving forward I'd always remember my experience and make better choices. 

One thing I can't go back and do again though is college. Almost four years after graduating, there is something I wish I had done when I was there – wanted to learn. I wish I took advantage of the fact that smart, educated people were standing in front of me to explain subjects that I now have to learn on my own time.  

Like most college students, I enjoyed partying and hanging out my friends the majority of the time. That's not to say I didn't work really hard. During my junior and senior year, I held down two jobs, an internship, classes and was editor on the school paper. Unfortunately, the thing that fell by the waist side was classes, which ironically was costing the most and the reason I had to work two jobs. All I cared about was having a good time and a good resume to show off to get the job I wanted. I worked just hard enough so I could get A's that would keep my GPA high enough to look good on my resume next to everything else. Instead of using college as a place to learn and expand my mind, I used it as a playground and a resume booster.

Confession (I hope none of my professors read this): I was an English major and read maybe three full books throughout my entire four year college career. Instead of taking the time to read a novel, I Sparknoted and skimmed through pages so I could pin point certain sentence structures and language during class. I bullshitted my way through discussions year after year. Rarely did I come up with fresh thoughts. They were mostly things I found online about the deeper meaning of the book. The only time I came up with my own ideas was during a script analysis class and that's because the reading was so short I could read it the night before. Not to mention, I was the only english major in the class so I was more used to critical analysis than most the performance majors I was with.  

Now that I'm out of school though, I'm always reading a new book. Not just fun Gillian Flynn-type books either, but novels that I was supposed to read and discuss in class six years ago. I can't put them down! Only now when I finish I don't have anyone to discuss themes and characters with, which can be a real pity at times. 

It's not just books that I'm going back and indulging in either. History has always been an interest of mine, especially New York City history. When I took a class with this specific focus sophomore year, we never got passed the 1800's. As disappointing as this is to me now, at the time I was thrilled that class was so slow and easy! In my own time I now read all kinds of history books about New York City. They often take a while to get through and there's lots of checking back in to see if I remember stories and facts correctly, but I just love knowing things! As stupid and trivial as it sounds, it's true. I like understanding references people make or telling a story to others who may find it interesting. It's a strange (and I'll admit, sometimes annoying) development in who I've become as a person but it is what it is. And if I'm being honest, I'm proud of it.  

Recently I went back to a museum I was assigned to go to college. "Ugh, I have to go into the city and go to this stupid museum," I remember bitching to my friends. Last week, I went to the same museum and chose to pay the full price that we got comped for class last time. It wasn't cheap either. It was a guided tour about Irish immigrants through the Tenement Museum. It felt so great to be a part of an hour class-like environment, asking questions and answering others (probably obnoxiously so). 

I don't regret how I did college by any means. I'm working and writing in the industry I strived so hard to get in to. I also made friendships and memories I wouldn't take back for all the money in the world. Anyone who spends too much time focusing on classes is also missing out on prime opportunities college offers. It's not bullshit when people say there's more to a college experience than just a degree and studying. For most people, it's the first time you're on your own and away from your parents, making your own decisions and meeting new people. There's a lot to be said for this time in your life when you're learning who you are as an individual. 

Then on the other end of the spectrum, if you're skipping and bullshitting your way through classes, you're missing out on part of the joys of a college education. Instead of just counting down the minutes until class was over, I wish I spent my time listening and caring about what professors were telling me. I mean actually caring too, not just caring because it would effect my grade. Okay, maybe not all classes because no matter what I will never pay attention to a science or math lecture, but in my english and social science courses. I should have engaged my mind more rather than just doing the bare minimum.

It isn't until you're out of college that you realize that it could be your last chance to be in school. It costs a lot to learn in this country and I can't afford to do it anymore unless I do it myself. So all I'm saying is, if you are in college, acknowledge it for the gift that it is and take advantage. Not everyone has the opportunity you were given and you might not ever get it again.  

I’m Obsessed with This Noisy Body Product

philosophy body mousse.jpg

Confession: I’m terrible at remembering to put on body lotion. It isn’t until I’m inconveniently out and about that I remember I should have slathered it on to keep my bumpy dry skin at bay. You’d think that discomfort would be enough of a reminder, especially for a beauty editor with approximately 40 moisturizers, but you’d be wrong. There’s only one product that reminds me to do this necessary step every day– Philosophy Body Mousse. I actually get excited to put on this entertaining and deliciously delightful mousse.

How could a body product possibly be entertaining? Well it’s foaming technology tingles and crackles loudly as you spray and rub it into the skin. It has to be one of the most active products I’ve ever applied. Anyone who’s tried it comments on how fun and surprising it is. It doesn’t have the rich creaminess of a lotion, so it is a bit futile for really dry skin. However, it does soften and even out skin tone, making it ideal for people the deal with redness. It’s not all about what it can do for your skin either. The mousse acts partly as perfume thanks to its heavenly scents of Philosophy’s popular Amazing Grace and Pure Grace.

As spring approaches, this fresh, crisp body mousse is the perfect alternative for your adjusting skin.

The Ups & Downs of Post-Grad Life As Told By My hair



People often say to me, “your hair looks different every time I see you.” That isn’t necessarily true– I’m not one of those people that colors my hair different shades of pink– but I have changed the overall look a lot since senior year of college.

It all started with a stereotypical post-breakup chop. Nothing too serious, just a wimpy cut to match the minor breakup. Barely any length was taken off or noticeable style was added, but it was the start of my post-grad journey and the first of many hair changes.

 Confusing, but this is not the ex that inspired the lob. I don't date guys who have better eyebrows than me. 

Confusing, but this is not the ex that inspired the lob. I don't date guys who have better eyebrows than me. 

Before my heartbreak lob, my hair had pretty much always been straight, blonde and long. It was natural and I was lazy. In high school, the long blonde hair was a part of my identity. It was easy throw up in a bun while I played soccer, tennis or ran track. It was also just as easy to look “pretty” in everyday bell bottoms and polos. I tried to hold on to this identity through college, but lacked the athletic ability and drive. Still, I held onto the hair for as long as I could.

I got my hair cut into a lob my second semester of senior year. I kept it that shoulder-grazing length for the majority of my first year out of college. The first big change I made was when I went brunette for a hot second. Since it was winter, the sun wasn’t bleaching my strands like usual and my roots started growing in. Instead of cleaning it up with some blonde highlights, I dyed it brown using an at-home L’Oréal Paris box dye.

Brunette hair courtesy of L'oréal Paris.

I decided that I just needed to accept I wasn’t a natural blonde anymore. I was a brunette and in transitioning to one I was ready to shed my identity as a long-haired athlete and blonde college party girl. I was a professional now, working a real job at Harper’s freaking Bazaar. I didn’t need my blonde hair, I had my own apartment with my own room! I had real dates with guys who made real money working at JP Morgan, not late Sunday nights with bartenders. I had found my grown-up look to reflect my grown-up state of mind.   

It was only a few weeks before the blonde started showing through the ends of my hair. There it was staring me back in the mirror. I was, in fact, a true blonde. I was not a brunette nor was I into finance bros or corporate work. I had placed all of these ideas of what I though being an adult was on myself, including my hair color. Within the next few months, I switched jobs, found a nice guy in construction and, after a three-hour appointment, I went back blonde.

The same way my hair felt, I felt—just right. I was incredibly happy and at-ease with where I was in my life, but I began to feel a little too at-ease. I started to get antsy. I was nailing being an adult, with a real boyfriend and 9-5 job, but I needed change. I wanted to experience and live, not just survive and succeed.

I partly blame this shift in focus on my reading habits. After stumbling across Patti Smith’s Just Kids, I started reading books about artists and writers in 60’s and 70’s New York. I became inspired by their creative and intellectual lifestyles. I wasn’t ready to actually become a bohemian, I still loved my life and wasn’t ready to make any major changes to it just yet. So instead, I went for a spontaneous new haircut.

On my way to work while reading Andy Warhol’s Popism: The Warhol Sixties, I was feeling relieved to have just turned in my article on bangs. All the sudden I thought, ‘I can see myself with bangs.’ My office was closing at noon that day, so it seemed like the perfect opportunity. Once I came out of the subway I called my salon and booked an appointment for 2. By 3:30 that Friday, I was walking around with my hair 2 inches shorter and wispy bangs. 

 I fancied myself a modern day Edie Sedgwick.

I fancied myself a modern day Edie Sedgwick.

I texted my boyfriend Mick, “You’ll never guess what I just did!” He replied, “Good or bad? Is it good or bad?” I sent him the picture which he responded to with a simple, “Cool.” Followed by “I didn’t even know you had a haircut today.” Twenty minutes later he wrote back, “I actually do really like it. I was just surprised. I feel like it’s exactly what you’re into right now with the 60’s thing.”

This hair choice was, once again, done in an effort to prove something. This spontaneous act was to show myself and others that I was independent; that no relationship was going to affect the choices I make. I make them for myself.

This funky cut, I will now admit, was the kick-off to my quarter-life crisis. All while wearing this style, I quit my job and left corporate life completely. I started freelance writing and working at a bar weekends and nights to help supplement my income. Luckily, the one thing that didn’t change was Mick. After about a year, he learned to handle the crazy.

I loved this look and kept it for as long as I could. After about a year, it had become a little too high maintenance for what was going on in my life. 

My dad had Huntington’s Disease and at the beginning of 2017, his health was on a rapid decline before he passed away in April. Obviously, my hair was not a priority at this point. The retro bangs and fresh color started to grow out as I made funeral arrangements and sobbed in bed.

After everything was over and my dad was buried and I couldn’t lay in bed any longer, I was ready to focus on work and get back on my feet. My friend Jeannine told me her colorist, Jan-Marie Arteca, was looking to do big makeovers for a bit of media coverage. This was the perfect opportunity to switch things up and start somewhat anew. So I went bleach blonde.

My amazing friends and family were a huge help in getting me through this most difficult time in my life, but I would be amiss to say that the fresh new color didn't also lend a hand. Going bright blonde gave me this surge of energy I needed to move on to a new chapter. It helped motivate me to enjoy both life and writing again.

As I write this, with dark roots growing into my bleached strands, I wonder what my next look will be or when it will come. I can’t decide if I’m willing to maintain this damaging shade of blonde or if I'm ready for something new. Whatever look I decide to get whenever I decide to get it, I can’t wait to see what story it has to tell. 

8 New York City Books for Every Type of New york Obsessed New Yorker


“Practically everybody in New York has half a mind to write a book — and does.

- Groucho Marx

Long-term New Yorkers typically fall into one of three categories. First, there’s the native New Yorker, who was raised in the city and sees it, not as a place of adventure or success, but simply their hometown. Then, there’s the people who are here for the money, work and lifestyle. They came to the city for a specific job or to get ahead in a certain career and have stayed due to their success and the lifestyle it has granted them. Then, there’s the die-hard lovers of New York City. These are those full-time bartenders, baristas and nannies that work the side service jobs just to maintain living in the greatest city on earth. They may have come to the city to find success and pursue a career, but they choose to stay and struggle because they fucking love this city.

I fall into the last category– the freelance writer living paycheck to paycheck. I could have a more comfortable life somewhere else, but I'd rather spend $8 on a Bud Light here than live in a house with a backyard. I’ve often said I can’t imagine doing what I do here if I didn’t love this city. It’s expensive, exhausting and just hard. But in my opinion, totally worth it. As John Steinbeck once wrote,

 "New York is an ugly city, a dirty city. Its climate is a scandal, its politics are used to frighten children, its traffic is madness, its competition is murderous. But there is one thing about it - once you have lived in New York and it has become your home, no place else is good enough."

This NYC passion I have drives most of my life's motives, including the books I read. I love the grime and grit of a NYC-based book over the typically sunny and bright disposition of LA ones. What can I say? I'm just a New York obsessed New Yorker.  

Since I'm far from the only one, I narrowed down some of my favorites NYC books that are great for all different types of the New York obsessed New Yorkers. 

For the struggling creative

Just Kids, by Patti Smith 

 Courtesy of   Amazon.com

Courtesy of Amazon.com

This memoir by Patti Smith is one of my (and many others') favorite books of all time. Not to be dramatic, but I partially credit this book to helping me realize I wanted to quit my job and write more. As a poet, singer, writer and all-around artist, Patti Smith’s tale of finding her place in the world and New York City’s artistic scene can be applied to almost any creative experience, even in modern day New York. This self-discovery all happens while in an incomparable relationship with Robert Mapplethorpe. If you're struggling to stay on track creatively, it’s easy to find inspiration in Smith's difficult, original and prosperous tale that she so purely shares.   


For the name dropper

The Village: 400 Years of Beats and Bohemians, Radicals and Rogues, a History of Greenwich Village, by John Strausbaugh

 Courtesy of Amazon.com

Courtesy of Amazon.com

This enticing book is all about the interesting figures that occupied the West Village since it became an artist sanctuary. Stories about everyone from Walt Whitman to Jackson Pollock to Edna St Vincent Millay to Dylan Thomas are told with such descriptive color that you feel like you’re sitting next to them at Chumley's or White Horse Tavern. 




For the Bob Dylan groupie


 Courtesy of Amazon.com

Courtesy of Amazon.com

Bob Dylan came to New York with two people in mind to meet: Woody Guthrie and Dave Van Ronk. Any true Dylan fan has already read his Chronicles: Volume 1. As wonderful as it is, it mainly focuses on how Dylan created his music. For a musician, that’s all well and good, but for a story teller more interested in history, I prefer Van Ronk’s unfinished memoir. Although he didn't reach the fame many other folk singers had at the time, he was a mentor to a lot of them and popular with most. They didn't call him the Mayor of MacDougal street for nothing. He retells his stories with such personable writing, it feels like he's talking directly to you. Which probably explains how he had me laughing out loud multiple times.


For the literary snob

Kafka Was the Rage, Anatole Broyard

 Courtesy of Amazon.com

Courtesy of Amazon.com

This is another unfinished memoir by another village inhabitant. Broyard was a literary critic and editor who often wrote for the New York Times. In his sharp, short memoir, he provides incredibly personal stories about sex and literature through a raw passion and beautifully descriptive writing. If you don't believe me, Norman Mailer once wrote, "I've read two stories by Anatole Broyard. They are each first-rate, and I would buy a novel by him the day it appeared." Sadly, no novel was ever published, but this little memoir makes for an honorable substitute. 


For the mob sympathizer   

The Gangs of New York an informal history of the underworld, by Herbert Asbury

 Courtesy of Amazon.com

Courtesy of Amazon.com

This non-fiction paperback goes into great depth on the lesser-told stories of the early gangs in New York. Instead of the Cosa Nostra and the Westies, it's more Dead Rabbits and Bowery Boys claiming their territory in the Five Points. If you're thinking this sounds an awful lot like Scorsese’s movie, you're right. This book of the same title was the inspiration for it. It has so much information that it's all any mob sympathizer like me needs to back up an argument on how and why organized crime started. (It's just business!) 



For the free spirit

Up in the Old Hotel, by Joseph Mitchell  

 Courtesy of Amazon.com

Courtesy of Amazon.com

Anyone who likes books for characters rather than plot needs to read this one. It's a compilation of features written for The New Yorker by the renowned Mitchell back in the 30’s, 40’s and 50’s. Instead of anecdotes about the famous, he tells the stories of everyday New York City eccentrics. It draws you in from the beginning with a humorous piece depicting the fun and lively history of McSorley’s up until the year it was published in the 1940. It maintains its rich personalities with tales of gypsy kings and Professor Sea Gull. 


For the east sider

Saint Marks Is Dead: the many lives of america's hippest street, Ada Calhoun

 Courtesy of Amazon.com

Courtesy of Amazon.com

In case you haven't noticed, I’m a bit biased when it comes to NYC neighborhoods. I'll admit, I favor the west side over the east. To keep things fair I had to include this book about the grungy, punk history of the East Village told through the development of its most famous street. Born and raised on Saint Marks, Calhoun depicts its growth from the time it was Peter Stuyvesant’s farm up to Kids’  movie fame. She also includes quotes from first-hand interviews she conducted with people who lived, loved and helped create East Village culture.     



For the Studio 54 wannabe

Holy Terror: Andy Warhol Close Up, by Bob Colacello

 Courtesy of Amazon.com

Courtesy of Amazon.com

I went through a phase where I read every book I could find on Andy Warhol. I succeeded too, reading everything from The Philosophy of Andy Warhol (From A to B and Back Again) to Popism. But this one was by far my favorite. As a feature writer and friend of Warhol, Colacello beautifully recounts some seriously crazy stories from a first-person perspective that you can’t get anywhere else. He perfectly paints Warhol as the brilliant, manipulative, fame-obsessed, complicated artist he was. He also doesn't hold back any juicy details about the Warhol entourage. He name drops and shares all kinds of crazy stories that took place during the wild years of the Silver Factory.