Our anxiety does not come
from thinking about the future,
but from wanting to control it.
– Kahlil Gibran

Photo: Two roses

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.

It started in my left ear when I returned home to Los Angeles on a flight from Chicago – my ear was full of pain and pressure, but I couldn’t make it pop. I assumed it was the plane and that my ear would balance itself back out soon enough. After all, I didn’t have time for this, I had a graduate thesis to complete. So, I prioritized that and tried to stay focused, but it wasn’t easy.

I was working long hours on research and writing, and I started to notice my eyes jerking back-and-forth randomly every now and then. I thought it was odd, but not that unexpected, given how much time I was spending on my computer, and what little sleep I was getting each night due to the crushing anxiety I felt. I also felt very alone, which didn’t help my mental health situation.

In the weeks that followed, I started experiencing some of the most bizarre physical sensations, as my full ear and jerking eyes were closely followed by lower back and foot numbness, along with a crazy tingling sensation that ran from the base of my skull through the ends of my toes every time I titled my head downward. There were days my balance and depth-perception were so far off I’d run into the corner of a wall or trip on my own feet. The worst days, though, were the days I could hear my eyeballs moving inside my head when I looked side-to-side – they made a swishing and grinding sound as the muscles moved around them. And those noises were immediately followed by a migraine and nausea that landed me in bed for at least three-days to recover. I felt completely out-of-control of my body and not only did I hate it, but I was becoming more and more terrified by it. When I graduated with honors that summer, from California State University, Los Angeles, 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 next for me?

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?

Shortly after graduation, I had a great career opportunity and I poured myself into my work. The energy I could muster each day went toward pretending I felt well and staying focused because I needed to be “on” for 9-hours. Then, I could reward myself by going home and crawling into bed. On the days I wasn’t working, I was bouncing from doctor-to-doctor and test-to-test, and just trying to be a normal 34-year-old in Los Angeles. I remember crying a lot and feeling extremely depressed and isolated during that time, and that’s also when I learned the true meaning of the word fatigue. I wasn’t only tired; I couldn’t physically lift my limbs some days. At that time, I just wanted someone to tell me what was wrong with me, so I could move on to treating it – whatever it was. It took nine-months, but in January 2011, I was finally diagnosed with Relapsing-Remitting Multiple Sclerosis. At that moment, I thought, “well, what a happy new year to me,” and then I immediately wondered – what’s next.

Photo: Sarah the disability consultant sits outside writing

ABOUT THE AUTHOR

Sarah Kirwan is the Founder and CEO of Eye Level Communications, a California-based company dedicated to having the critical conversations necessary to connect communities and drive positive social change for people living with disabilities. She is also the host of the Incluse This! Podcast, a movement for disability equity, that aims to amplify disabled voices, highlight shared experiences, and work alongside disability allies to unify the disability community.

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