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

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 isn't particularly lucky (for many reasons) and with something 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?) .

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. Now 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 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. 

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.

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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 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. 

A Love Letter On My Coming-of-Age With BCBG

Growing up on the eastern shore of Maryland, the closest place to shop was the nearby outlets. There, you could pick up your general t-shirts, jeans and polos thanks to stores like LL Bean, Old Navy and Bass. If you wanted something trendier like Abercrombie or Hollister, you’d have to travel almost an hour to the nearest mall.

When I was in high school, the complex got a huge makeover, bringing in designer stores like Kate Spade, Michael Kors and Calvin Klein. However, there was one place in particular that changed the game for me completely: BCBG. 

BCBG became my guide of sorts through the transition of small town teenager to young metropolitan adult. Just like most BCBG admirers, it started with a homecoming dress. Nothing too crazy, just a knee-length black halter dress. Then, little by little, I started to stock up– a simple top I could pair with black jeans here, a sweater I’d wear to school there. Before I knew it, BCBG esthetic became my esthetic. 

I’ll admit, it wasn’t always a smooth ride. The 2000’s were an awkward time for teenage style, or really any style for that matter (Remember how Kim Kardashian looked back then?!). At first I didn’t always know how to wear my BCBG pieces. There were some pretty poor pairings I regret, some scarfs and hats I wished I’d never purchased from other stores. But the more time I spent in the store, the more I learned how to create the style the I was craving. 

" It took me from an awkward teenager in a homecoming dress to confused college student in a party top to ambitious intern in a black blazer to the young New York woman I am today.

It was during those many trips to the outlet store where I finally learned how to put together a clean, chic outfit. It taught me that clothes can be both sexy and sophisticated at the same time. And just like a true New Yorker, it helped prove that black will always be the new black.

Since discovering my love for BCBG, it has dressed me for some of my life’s biggest events. It’s been worn to first days working at dream magazines; to fairy tale weddings in New York, DC and Ireland; and to countless amounts of parties I’ll never forget.

In old news, brick and mortar BCBG's no longer exist. Therefore, no other young, small-town girl will have the opportunity to experience a similar coming-of-age with this place that felt so important to me. BCBG took me from an awkward teenager in a homecoming dress to confused college student in a party top to ambitious intern in a black blazer to the young New York woman I am today.

I don’t think it’s an over-exaggeration to say that BCBG’s style completely shaped my young-adult, metropolitan style. It might have even helped inspire me to create the New York City life I’m lucky enough to be living.