Conversations @ Eye Level

Photo: Sarah the disability consultant sits outside writing

Don’t be afraid.
Be focused. Be determined.
Be hopeful. Be empowered.

– Michelle Obama

I left corporate America almost four years ago – physically sick, mentally exhausted, emotionally spent, and spiritually challenged. At the time, I went kicking and screaming, but I still went. I knew I was hanging on by a thread, as my body and its health, or lack thereof, ran my life and dictated my choices. Today, as I officially launch my company, Eye Level Communications, LLC, I’m grateful I made the decision to prioritize myself and my health that day! I hope you’ll join me each week, as I share different aspects of this life-altering journey that put me on the path I’m on today – working toward equity and inclusion for all people living with disabilities.

—Sarah Kirwan, Founder & CEO

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I desired to be the CEO of a large healthcare system and the first congresswoman with MS in Washington, D.C. But the long hours and stress of the high-level positions I held were negatively impacting my physical, emotional, and mental health.

What Matters is the Good We Do

For as long as I can remember, my value and self-worth were intricately and intimately tied to my work position, title, and production. I had no idea who I was without them, until I was forced to learn. And learn quickly I did.

I am in my early 40s and diagnosed with both multiple sclerosis (MS) and superior semicircular canal dehiscence (SSCD), a very rare inner ear disease affecting 1-2 percent of the world’s population. While my MS diagnosis took approximately eight-months, my SSCD went undiagnosed and misdiagnosed for almost nine-years.

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I could feel tears welling up in my eyes and rolling down my cheeks, as the manager came over, apologized profusely for the attendant’s behavior, and checked my bag immediately.

Am I Disabled Enough?

If I had a dollar for every time I’ve heard – “But, you look so good. I can’t even tell!” – I’d own my own private island in the Galapagos’. But sadly, I don’t. What I do have is a myriad of experiences, that when compiled, have ignited a passion to educate those around me about living with invisible disabilities. Simply put, an invisible disability is one that can’t be seen. And my disability, Multiple Sclerosis (MS), is currently invisible. While I assumed it would be relatively easy for me to straddle the line between disabled and able-bodied – it wasn’t. It still isn’t. And that’s because the quiet judgments, awkward stares, and inappropriate questions never stop.

The question of being disabled enough is one I’ve pondered for the last few years, and it’s a question I still don’t have an answer for. Invisible illnesses are hard. I feel like I’m either constantly defending and explaining myself, or downright proving my illness to others with my blue handicapped parking placard in-hand.

I remember thinking to myself – in this one part of my life I’m blooming, yet in this other part I feel like I’m wilting – what’s happening?

What’s Wrong with Me?

As a stereotypical Type A workaholic personality, who was obsessed with my next move in life and up the corporate ladder, I was always thinking about, working towards, and asking the question - what’s next? However, that all changed nearly a decade ago when life answered.

In the summer of 2010, I was finishing graduate school, actively seeking employment, and unraveling myself from a lengthy, toxic, and codependent relationship. And although that was plenty for me to focus on at the time, I was also extremely sick – but, I had no idea what was wrong with me, and it would take nine months for me to find out.

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