It has been a year and a half since my last update.  You might think that, like a junior high school girl with a journal, I just simply forgot to write.  It wasn’t that.  There just wasn’t much to share.  I realized, though, when I received a kind note on the blog last week from a stranger (hi Julia from Perth, Aus.!), my words were impacting others who are navigating the ataxia journey, and so, no update is, in fact, an incredible update when you are dealing with degenerative illness.  So here is the quick and dirty. 

In August, I learned that Biohaven had elected to offer the study drug I am on for another year!  As a result, I have remained in the drug trial and my score remains at a 1.5 out of 40.  I will continue to have access to the Biohaven drug into mid-2020, at which time we will again explore my options.  However, by then it is likely a competing drug will be mid-trial and if it is showing success, I may be able to jump from one study to the other without any lag time or impact on my health.  It is beyond exceptional news.  I have no doubt that without the Biohaven drug, or another like it, I would be unable to walk without a physical aid by now based on the usual progression of SCA1.  I have gone through that progression before in other blog posts, so no need to remind anyone here.  I will just reiterate that the fact I am able to do everything except stairs without assistance is a triumph.  I am forever in my debt to Biohaven, my neurologists, and UCLA (although not literally in debt, because the best part about being on a drug trial for all this time is I have not had to pay one penny for access to the drug or my doctors). I will say it another time.  It is beyond exceptional news and I am thankful every single day.

I will admit that it becomes easy to cheat on the rest of the health and wellness routine when you are on a wonder drug, but I have recently recentered my focus.  In August, I quit my job at a law firm to work in human resources.  I cannot tell you how impactful the decision was on my health and wellbeing.  I went from working 14 hour days (or longer) to 8.  My weekends went from being on my computer to being in my closet, going through boxes and decluttering years worth of stuff.  I am doing laundry on a weekly – not monthly – basis!  I purged my closet of nearly every suit I own.  It was tremendously cathartic.  The more I think about my time as a lawyer, the more I struggle with the realization that it becomes easy for us to walk through life accepting unhealthy choices.  It is nuts that I failed to see how unhealthy my work life was when I was otherwise so centered on my physical wellbeing.  I now see things more clearly and make choices that incorporate health into my life more holistically.  In addition to working healthier, I am living healthier.  I started walking to work as part of a “Movember” challenge, which has helped relieve me from an otherwise sedentary lifestyle. I have stuck to the ataxia diet, meaning I remain gluten free and avoid soy, refined sugars, and limit my consumption of alcohol (though I have bent a little on my wine intake, which I think is a fair tradeoff when you are a solid 1.5!).

Sunday is my 40th birthday. To commemorate, I bought myself a fancy shmancy pair of heels. I bought them because I can. I absolutely do not mean that in a monetary sense. I mean it to say that in May 2016 if someone had told me I’d by physically capable of wearing heels on my 40th birthday, there’s a fair chance I would have thought they were out of their mind. Just go back and reread this piece if you have any doubts. However, as anyone who knows me (or who has read this blog) can see, I don’t accept defeat easily. I choose to believe that anything is possible. Anything can be. And so, thanks to the miracle of modern medicine and a whole lot of positive energy, I WILL be rocking a hot new pair of heels this Sunday. Beyond being breathtakingly beautiful, I chose a pair with hearts, so I can remember those who ataxia stole too soon – my mother and the grandfather I never met. Though they are gone, we walk together always.

Until next time, I ask anyone who has read this far to take a pledge as we end 2019 and move toward a likely divisive 2020 here in the States — never settle for anything less than the best version of yourself. Be aspirational. Be the person that you want to be. There is no point focusing time or energy on defeat before you even start to run the race. Anything is possible. Anything can be.