Together.

Life is easier when you share the burdens of it.

There are a lot of things in my life that I often wish were different. Or, things I’d do differently if ever given such an impossible opportunity. Life has been nothing short of an adventure; full of ups and downs, mountains and valleys, fast and slow, good and bad. However, one thing that I continue to realize more and more, is the bit of ease in which I can face any hardship when I allow others to face it with me. My respect and value for authentic and vulnerable living continues to develop with time and practice.

Now, don’t expect the juicy details of my life all poured out here. That’s not the point of this writing. Plus, I’m convinced my juice is more valuable than an easy scratch-and-sniff link to a free blogpost. Sure, I may be wrong. I was wrong once before.

I recently read the book Velvet Rage by Alan Downs, PH.D. It’s a book that I’ve been meaning to read for years but wasn’t in a hurry because I had a feeling there’d be a thing or two I wouldn’t necessarily subscribe to. However, an underlying message from the author is the dangerous, tumultuous, and unfulfilling life that people live because they aren’t authentic; they keep two (or more) sides to life that must be separated completely from the other, one side kept secret and completely uninvolved with another side. The author refers to this as splitting – the determination and commitment to play multiple parts in life.

This rings true for me, in many areas, and has been largely present most of my life.

However, one particular area of my life where living with authenticity and sometimes vulnerability has come fairly easy for me, is the fact that I live with a rare disease that makes daily routines challenging, threatens to take away much of my independence and ultimately my life. I have no idea why the diagnosis and prognosis of Friedreichs Ataxia has been easy for me to accept and engage with unabashedly, but I am thankful that this particular journey has been wide-open from the beginning. I realize that this is not easy for everyone, no matter the circumstance or prognosis in life. Trust me, I’ve struggled with the same principle or characteristic in other corners of life.

I just spent the last few days in Tampa, Florida, a community that is incredibly strong, motivated and supportive in the fight against Friedreichs Ataxia. I don’t know everyone’s story, but all those present over the last few days have a couple things in common: a connection to FA and a passion to find a cure! We are all drawn together by this devastating disease.

I only know a handful of those present on a personal level, but I am eternally grateful for everyone involved in FARA’s Energy Ball because they are helping share the burden of this particular peril. Some of them study the science of the condition, some of them help fund the study of the science, some of them provide medical care for people living with FA, some of them live with FA and some of them volunteer to support such events as the Energy Ball. But one thing is true, no matter who I’m thinking about or talking about, we all help carry the burden. We all have a part to play. We all want a cure. We all want to win.

Life is easier when you live openly, vulnerable and authentically. Share your burdens and the burdens of others and you’ll be better poised to find a reason to dance, even when you can’t walk.

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