My Story As Told By ME: And the Many Hats I Wear

For those who missed it or asked for copies, here is a modified "blog version" of the presentation I gave during my university's Diversity & Disability Contest a couple of weeks ago. The contest criteria were to present a five minute lesson on some aspect of disability as diversity. The entire experience was humbling. I got to meet some incredible fellow students and hear many other unique stories. Coming in second place was only the icing on the delicious cake!

My Story As Told By ME

And The Many Hats I Wear

Life begins as the story others tell about you.

She was born six weeks early.

She did things her way.

“NO,” and “You can’t,” were not words even in her vocabulary!

...But time goes on and as we grow, life becomes the story we tell about ourselves

It can, in fact, be summed up quite nicely by the many hats we wear.

The hats we choose,

The ones we didn’t,

And oftentimes, the hats that were never even put on the table for us to see...

 I was just a “typical” little kid.

Maybe I was a lot like you,

I wore many hats as a child, and planned to continue in just that way.

At twelve years old, I learned to knit my own hats.

It seemed like the world was a giant ball of yarn at my disposal and I had all the tools I needed to create something incredible!

Only in my early teens, I started to feel exhausted,

To the point that I had trouble even staying awake.

It didn’t matter if I slept for two hours or for twelve,

I experienced chronic and continuous pain.

I saw doctors and specialists,

Experts in their field,

And my options all seemed to unravel to nothing but a label

In the best of circumstances: “NORMAL TEENAGER”

(No, I don’t think those words go together either)

But in worse circumstances the labels included:  “overreacting” and then “depression” and other types of “mental illness”

 Which led to some of these: 

worthless, hopeless,

incapable…

stupid, failure, fragile,

LAZY,

ruined, broken, damaged

These were not the words I’d necessarily chosen, but for years they were the ones that defined me, accompanying me from a childhood of academic and extra-curricular success to an adolescence of remedial classes, barely attending let alone graduating from high school and over a decade of swallowing prescription medications that were unnecessary if not a risk to my health.

The details and diagnostics aren’t so important now. 

In just a few weeks, I’ll finally wear this hat, which I was told was never possible.  

I’ll wear this hat in part because I’m stubborn and at a certain point in my life, it stopped being OK for others to decide which hats I could wear and which I could not.

"In just a few weeks, I’ll finally wear this hat, which I was told was never possible." 

I’ll wear this hat also because just about two years ago as I was nearing the completion of my bachelor’s degree, I developed some more unsettling symptoms. 

The thought of seeing doctors again was scary. Worse than that, however, was the idea that taking time off might mean all those labels were true. I took the chance nonetheless, put my academics on hold and began another arduous process of doctors’ visits.

Ten months later, somewhat accidentally, I was finally correctly diagnosed with obstructive sleep apnea. In all likelihood, I’ve had sleep apnea or the propensity for it from the time I was born. After fifteen years of severe symptoms, it took only one night of observation in a sleep lab to see that on average I stopped breathing over 30 times per hour.  

Often I’m asked:

Aren’t you angry that they never knew?

Or What if they had figured it out 15 years ago? How would your life be different?

Occasionally I do think about that, but for the most part, I’m celebrating. Plus, check out this awesome Darth Vader hat I get to wear to bed every night:

The important part of this story,

the one I tell about myself today, is that at one point, I allowed misconception and an all-too-common perception dictate which hats I could wear, which hats I would wear and more importantly, all hats aside, how I defined who I am. Standing here today in celebration of the many characteristics of diversity on this campus, I ask you:

Who narrates the story of who you are? And who you will become?

Were there people who shaped you into being? Were there ones who tried to tear you down?

For me, it’s not about ability or disability.

It is about opportunity and the right to choose how I define and describe myself.

It’s about remembering at any moment that although there is much we can tell from the cover of a book, there is more to every story than meets the eye.

At the end of the day, as I mask up for a good night’s sleep, it feels more important to me to acknowledge the multitude of traits that connect us than the comparatively few which set us apart.

 

“Today, it feels more important to me to acknowledge the multitude of traits that connect us than the comparatively few that set us apart.”