With the coronavirus pandemic, all of us are experiencing loss of some kind. Many people have lost loved ones. Others have lost jobs. Some losses have been larger than others, but the common thread is that we’re all feeling a collective sense of loss and lack of control over our lives.
For me, the biggest loss has been my ability to handle “cognitive load” — to move information around quickly and multitask with precision. My thoughts are still moving quickly, but not very productively.
Usually, my brain works like a satellite overview of a map: I see all the possible routes, detours, and end destinations. I can juggle a number of projects at the same time and think about multiple solutions to problems all at once.
But something about the ongoing pandemic, societal uncertainty, and political unrest has made my brain lose its anchoring system. My brain is no longer a GPS. Not in a way that means I can’t function, but in a way that scares me a little bit. It’s painful, it’s unrelenting, and it’s because I have a disability.
In writing this, I’m losing something else: privacy. I wasn’t quite ready to disclose this disability, but I know it’s the right time.
As a leader in the field of disability and difference, I spend my days working to create a world where difference isn’t just tolerated, it’s embraced, and where people can get the support they need. I can’t authentically be that leader while masking my own disability. So, here I am.
In speaking up now, I’m losing the ability to stay in my comfort zone, but I’m also finally losing the burden of hiding and masking my disability.
Many of my friends and most of my colleagues know I have an invisible disability. They know a little about how it impacts me and what accommodations I may need, but I’ve never told them the exact diagnosis. I’ve never had to before, but here’s what it sounds like inside my head on any given day lately.
“There’s no ‘of course’ anymore, so we’re setting our own course.”
“There’s not ‘of course,’ so we’re just off course.”
“This was supposed to be a year for our family to rethink and refresh, but it’s become a year of regret and reframe.”
Songs and song lyrics: Often looping in my head is an Allen Saunders quote (made famous by John Lennon): “Life is what happens to us while we are making other plans.”
Sometimes it’s the chorus from my favorite song by The Script.
More often, it’s a persistent, unrelenting mashup of song lyrics and sound bites. And it’s because of my disability, made worse by this year of loss and unpredictability.
I have an anxiety disorder, sensory processing issues, and obsessive-compulsive disorder. Surprise, friends and colleagues: I have OCD.
Why haven’t I said something before? Partly because I have an extraordinary team of health care providers and a solid treatment plan — most of the time, my OCD doesn’t get in the way of my functioning. In fact, I tend to over function and am a really successful human, both in my career and in my personal life. As a friend told me the other day, I’m actually “crushing it.”
But I also haven’t disclosed because I’ve been afraid of people stereotyping me based on my diagnosis. For me, OCD doesn’t manifest in the compulsions many people think of. Instead, when my anxiety is out of control, I have intrusive thoughts — thoughts that pop into my head and get stuck there. Right now, it’s sound bites, song lyrics, and some other things, tangling around themselves in my brain. They. Will. Not. Leave.
Here’s the thing about life during this pandemic: There’s nowhere for my superactive brain to go because there’s no way to plan, organize, strategize, or multitask our way out of the problems we’re facing. All of those song lyrics and sound bites are hiding a series of “what if” questions I can’t answer.
- What if life never returns to normal?
- What if life shouldn’t return to the way “normal” used to be?
- What if life really is what happens while you’re busy making other plans?
The “what ifs” are unanswerable right now. All we have to work with is “what is.” Knowing we all have to let go of the “what ifs” has made it easier for me to focus on what is.
It’s no longer “What if I have to tell people more about my disability?”
What is: I need to explain more explicitly why I’m having word retrieval issues and trouble juggling multiple projects — not just the sensory issues people are used to seeing from me.
It’s no longer “What if people think of me differently once they know my diagnosis?”
What is: The rules of how we’re used to interacting with each other have changed. I’m hoping that the increased conversation about mental health issues during the pandemic is building a society that’s letting go of some of the stigma about talking about it.
It’s no longer “What if people treat me differently now that they know my diagnosis?”
What is: People can treat others differently now that they know my diagnosis. I am crushing it. I sit in a leadership position. So I need to stop hiding and start leading. We need to live in a society that believes that if it’s hard for me to say it out loud, it’s true. A society that doesn’t ask me to prove I have a disability. A society that trusts me to know what I need to make it through this year of loss.
Here’s another important “what is”: In speaking up now, I’m losing the ability to stay in my comfort zone. But I’m also finally losing the burden of hiding and masking my disability. It’s made me realize that there are losses that leave a hole, and then there are losses that can make you whole. The loss of worrying about being stigmatized is making me whole.
Sometimes the song looping in my head is the one that I need to hear most. Right now? It’s Joan Osborne’s version of “One of Us.”
This year, just like in this song, we’re all just trying to make our way home. I’m choosing to walk into unknown territory so I can lead. Maybe it will help someone else find their way home.
Amanda Morin — education expert at Understood, author, speaker, podcast host, former classroom teacher, early intervention specialist, special education advocate, and exhausted.