It’s crazy to think that it took me getting diagnosed with a life-shortening, debilitating, progressive neuro-muscular disorder in order to pop the selfish, all-knowing, poor decision-making, immature bubble I was floating around in. I needed a serious wake-up call and the universe was aware it would take something drastic to help me change my life’s path.
Friedreichs Ataxia (FA) is now something I will have to deal with until it weakens my body and stops my heart. FA leads to loss of coordination from the tips of your fingers to your toes, diabetes, maddening/indescribable fatigue, hearing and vision loss, slurred speech, and scoliosis (sometimes so severe, it requires spinal fusion surgery where a metal rod will need to be inserted in the spine). FA also causes you to be completely dependent on a wheelchair and a care-taker as the disease progresses and then eventually will cause a heart condition that will lead to a premature death.
Never Say Never
Never did I think I would be handicapped. Never did I think I would be diagnosed with an incurable, untreatable rare disease that deteriorates my muscles as I type this. Never did I think that handicap placards and accessibility concerns would become apart of my daily life. Never did I think I would have a conversation with my parents telling them there is a possibility they might have to plan my funeral instead of me planning theirs. I was that girl who drank too much (still do sometimes, I’m working on it), always looking for the next party to attend. I was interning for franchises that I never thought I’d be apart of- The Oakland A’s, LA Clippers and the Phoenix Suns, just to name a few. I had no accountability, no compassion, no REAL responsibility outside of school and work, no concern for other people’s feelings and believing I knew everything about everything- I was sure I had life figured out. Boy, was I wrong
A little "off" Explained My Diagnosis: Friedreichs Ataxia
The first thing I noticed that was “off” was the struggle I had walking up and down stairs in college and how tired I would get walking into work at The US Airways Arena. As someone who played sports the majority of their life and ran bleachers for a workout, I was having a challenging time climbing and getting to the bottom. I couldn’t navigate a set of stairs without white-knuckling the railing or holding on to someone. The part I never realized until after my diagnosis was the fatigue. I was tired ALL THE TIME and I just thought it was because I was partying so often. ASU was known for being extremely thirsty even though we were a “dry campus.” I was diagnosed one year after graduating college at the age of 22. A genetic (blood) test confirmed I had inherited Friedreichs Ataxia and was in the elementary stages of the disease. Being told you now have to face a progressive illness with no set treatments or cure, being told there is nothing you can do to stop this and given absolutely no answers on my diagnosis day was crippling in itself. “How the hell did this happen? Did I do this to myself? Was it my partying? What the hell is FA? How do you say Friedreichs Ataxia? How am I going to tell my family and friends? Canes? Walkers? Wheelchairs? What?” These were the thoughts I had on the car ride home.
Months prior, I had been doing research on ataxia when a neurologist told me that’s what he thought I had. After some google searches, I knew it was Friedreichs. FA is inherited from both parents, so it was nothing I did. I’m sure some of my lifestyle choices didn’t help my situation, but ultimately FA was going to be in my life regardless. I’ll never forget the way my stomach dropped after reading the sign and symptoms of FA and the life-shortening factor is what makes the disease different from other types of ataxia.
Friedreichs Ataxia Has Changed Me In The Best Way Possible
At the age of 25 I have figured out this is my purpose here on earth, for however long that may be. Some people search for that answer their whole lives and I am lucky enough to answer that so young. I was meant to raise awareness for rare disease, to remind people to appreciate life, be grateful for the small things, to inspire others to embrace their disabilities and all the equipment that comes with it, to show people how important physical activity is- regardless of a disability or not, to share my journey through words and photos and making people feel emotional, to participate in clinical trials for the kids who are too progressed or afraid to do them, to speak for those who physically can’t and to be a realistic, relatable person that can show people it’s possible to change. Humble, accountable, compassionate, patience and understanding are all characteristics I can honestly say I have learned from being diagnosed. I have become more present and live in the moment while cherishing the memories I make. My phone is no longer the primary memory holder, thats what brains are for.
Now, let me get this out of the way: by no means am I trying to say that I have figured out life and I have all the answers. But, I do believe being diagnosed with FA put me back on the path I was meant to be on and I am still working on becoming a better person, every single day. I am reminded often of how my attitude will change the more I progress and if that happens to be the case- so be it. Let me live my life the way I know how and enjoy my health now.
"Life is the art of dying well" - Atticus Poetry
This is what I want everyone to take away from my writing: BE LEGITIMATELY GRATEFUL FOR EVERY SINGLE THING YOU HAVE AND PUSH THROUGH LIFES BS TO ACHIEVE YOUR GOALS. Every single person you encounter in life has either gone through hardships, are going through hardships or will go through hardships. Understand that and listen to their stories like you’d want someone to listen to yours, and be kind. Life is too short for hatred and judgement. Leave a legacy you’d want to be remembered for, after all, “life is just the art of dying well”.