Four Years Ago Today, I Fell Out of Bed.
Posted on March 30, 2016
Today is the four year anniversary of when my chronic illness began. And to celebrate, I am going to respond to this letter:
Bijan Mawji and I are Facebook friends on a group for Entrepreneurs with Chronic Illnesses/Disabilities. I wrote him because as my health worsens, I need to transition out of my current careers (acting and teaching acting) and find something a little less punishing. He sent me your link and suggested I write you.
I love your website, and what you’re doing is so, so cool. (And of course I signed the petition for the J Crew Cane, which I would personally love to have.)
Do you have any guidance or advice? I need to do something that doesn’t require too much physical effort but also doesn’t make me want to stick a fork in my eye. I have a BA from Barnard College in English Lit (somewhat useless), and an MFA from NYU in Acting (totally useless).”Thanks,Tory
Your email comes on the heels of the strangest day of my life. It was 4 years ago. 4 “on my knees, I can’t breathe, what is happening to me” years ago.
4 maniacal, egotistical, brazen, cocky, audacious years ago.
4 victim filled, blame the world, this isn’t me years ago.
4 introspective, self reflective, inspiring, insightful years ago.
4 amazing, enlightening, life changing years ago.
…it was the best day of my life.
A friend recently told me there are only two most important days in your life: The day you are born. And the day you find your purpose. Because my life changed four years ago, I found my purpose. And you will too.
You say your MFA and your BA are useless. I assure you, they’re not. My background is in TV. I like to shop. I’m athletic. I walk with a cane. I’m serious. I’m funny. I’m spunky. I live with chronic illness. I smile constantly. I live with depression. I’m both snarky and sensitive. I’m loyal. Each of these characteristics contribute to my paradoxical world view. My failure to fit in any box gave me the skills to become an outspoken advocate.
You. You’re an actor. You’re a writer (or a reader) (maybe both). You live with chronic illness. You’re in a group for entrepreneurs. You’re reaching out. You’re asking questions. You’re finding your way.
Growing up, I always felt like two aspects of my personality were at odds with each other. I’m a skeptic who strives to be included. To be totally honest, it made me ill-suited for corporate culture. But I now realize the emotional push and pull that happens between these two emotions has created something quite incredible. The Inclusive Fashion & Design Collective is the first fashion trade association for people with disabilities. And it will thrive on the skepticism of people who are typically excluded.
Just like you, I live with chronic illness. But my energy for my work is boundless. That does not mean my energy is boundless. It means I make time in the quiet times. Over these past four years, my best work has happened as I drifted off to sleep. I have woken from many a nap in absolute panic, trying to get it out before it’s lost. Thankfully the good stuff never stays lost for long.
What is that thing that keeps you up at night? The slight that riles you. Makes your blood boil. Where do you find relief? When in life does your lion heart come alive? What do you see that others don’t? You have everything it takes to bring your vision to life. You. Just. Have. To. Do. It.
And it’s awkward. And you’ll be bad at it. And then you’ll get better. And then, one day, you’ll realize someone is listening. And then, one day, you’ll realize someone sees potential in your passion. And then one day, you’ll realize someone thinks you’re successful. And then one day, you will realize you’re living your dream. You. Just. Have. To. Do. It. What other choice do you have? Perhaps you’ll decide to do what I did… Start a blog. Give it a long and arduous name. And write a first post. And then a second. And then one day, you’ll realize you’re hung up on something. And that’s the moment. The moment that changes everything.
Four years ago today, the seed of an idea was born. At first it was one thing. And then it grew into something slightly different. And then that grew into something slightly different. And now it is what it is. You need to be open to change. You need to beg for critique. You need to not force it. You can’t force it. You’ll try to force it.
And one day, people will tell you you’re good, you’re inspirational, you’re moving mountains. And deep down you’ll know that you’re none of those things. You’ll know the truth, that chronic illness made you more selfish than you were before. And that’s totally fine, because pursuing purpose is a selfish endeavor. If you don’t allow yourself moments of absolute selfishness, you’ll fail. Good people fail.
I’m not a good person. I am a person who is doing a good thing for the selfish desire of fulfilling what I have determined is my life’s purpose.
We live in a society that strives for happiness. Why is this so? Call me crazy (ok, call me crazy) but I have only ever experienced happiness as a transient emotion. It comes and goes, ebbs and flows, in and out, it’s own free will. I no longer ask the tide to stay in. Instead, I cherish those moments of happiness while seeking the unwavering friendship of purpose. Purpose. If you find it, if you nourish it. If you cherish it. If you do right by it. It will not leave you.
So what’s the advice? The advice is to keep searching. Start expressing. And give yourself the freedom to make regrettable mistakes. Your personhood, your past experiences, your creativity, and your sheer force of will will take care of the rest.
I can’t wait to see where you wind up in 4 years.