The Journey Starts Now!

Welcome to my first blog posting and I’m glad you’re here! It’s taken me quite a while to write this first post because I was and still am terrified that I don’t know what I’m doing and that I’m going to suck at this. I’ve obviously been reading way too many well-established blogs and that has me doubting my abilities… But enough of that! I want to share my stories, even if they aren’t as ‘uplifting’ or ‘remarkble’ as the others out there, in hopes someone somewhere will come across this and take something valuable away from it whether it be knowledge, a hearty laugh, an eye-opener, the feeling that you aren’t alone in your struggles, or really anything you as the reader are compelled to take away from my experiences. Or nothing. That’s completely up to you.

Now to the juicy details of my existence. For those who don’t know me personally, allow me to give you a very brief history of who I am so that there will be context for all subsequent posts. If you weren’t sure or didn’t actually read my ‘About’ section (go read it!), my name is Priscilla and I’m currently 25. I was born with a neuromuscular disease (Nemaline Myopathy) that falls under the Muscular Dystrophy umbrella, but it’s one of the rarest forms, so don’t feel awkward if you’re sitting there wondering why you’ve never heard of it before. I was diagnosed early in life and at the time of diagnosis, my mother was told that it only occurred once out of a million births. I don’t know if that statistic is still accurate today, but I’ve always taken pride in knowing I’m a rarity by definition.

I’m far from an expert on this disorder and therefore I cannot comment on how it affects other individuals because really there isn’t a one-size-fits-all for any disability, but I can elaborate on how I’m personally affected. Essentially, this disorder weakens the muscles, primarily facial, limb, and trunk muscles. However, there are different severities and I happen to be on the more severe end of the spectrum. So, what does that mean? This means that I’ve never been able to walk, I use a wheelchair, I basically don’t have any body movement, and my swallowing and breathing muscles are super lazy resulting in my need for a feeding tube and respirator to keep me alive. Many professionals will argue that this disorder isn’t progressive (meaning it doesn’t worsen over time), however, I beg to differ. Once upon a time, I could use my hands, roll over, scoot, hold my head up, swallow food without difficulty, breathe without being attached to a machine, and a whole host of other human functions. These abilities faded over time and now the strongest muscle I have is my tongue. Not joking, I’m serious! I’m actually typing this with my tongue right now. I probably should give some credit to the first three toes on my right foot, too… Those babies do all the clicking for computer navigation. Pretty damn awesome, huh?

(Note: Notice that I refer to my disability as a disorder rather than a disease. The word ‘disease’ carries far more negative connotations compared to ‘disorder,’ and though technically Nemaline Myopathy is a neuromuscular disease, I don’t like how it makes it sound like I’m contagious. Trust me, even if you give me a hug, you won’t contract this genetic mutation. I promise.)

Obviously, my disability is a huge component of my being and has quite frankly had a hand in shaping every aspect of my life, but I’d like to think there’s way more to me than this. For instance, I have excelled academically throughout my years of schooling and attended the University of California at Davis, graduating with a BA in 2012. Or, I was loved and raised by my single mother and maternal grandparents, and they’ve been my rock throughout this rollercoaster of life, never faltering. Or, that I come from Mexican and Chinese backgrounds (about 98% Mexican) and I’m incredibly proud to say that. Or, that I have the deepest love for all things Disney and there have been so many rough patches and hurdles throughout my life where Disney has pulled me through mentally and emotionally. I could keep going, but let’s save some interesting facts for later on in our journey together.

So, now that you have an idea of who I am, albeit limited, I encourage you to come back over and over again to read more about me…and all that accompanies me. If you’re so inclined, perhaps subscribe to this blog, Still I Rise, insuring that you never miss a post!

Thank you for being here, and I greatly look forward to sharing this with all of you. Until next time!