Voice Lessons

Illness, dating, and career shifts—on emotional investments, voice, and choosing where to spend your energy.

What advice do you have for the chronic illness and disability community? I pondered the question this spring when I was featured on Instagram’s “Chronic Love Club” page with my CIDP story.

Ask questions, take notes, or have a scribe accompany you to your doctor’s appointments because the language of the specialist is often foreign. There is no pre-teaching vocabulary or setting of context.

I have become the context, and the lesson is built around me, quite the opposite of how a teacher lives their life.

I ask my neurologist time and again, “What’s the analogy you use to describe why I struggle to speak or breathe at times?” He reminds me it’s not dangerous, but rather a timing issue with nerve signals misfiring and my diaphragm compensating for my cranial nerves. He uses the analogy of a car. If the timing belt is even a millimeter off, coordination is affected. It’s not dangerous, just inconvenient. The esophageal spasms are simply discomfort.

I wait until I step out of his office to laugh at “discomfort.” No. Imagine you are submerged in water, allowed to come up for catch breaths every two minutes, yet somehow, you never drown and oxygenation never dwindles, but the sensation of drowning is there. Those are my flares.

That’s why I say just keep swimming because I know eventually I’ll break the surface and my world will be okay. Just breathe normally. Oxygen is flowing. It’s just a bit harder to take a breath. My muscles are fatigued, yet I chose professions all involving communication–much of it spoken. When I returned to school for my MFA in 2020, I shifted my focus from play direction to writing, reasoning that I could always write, even if I couldn't always speak. I have seen communication that defies traditional verbal in one form or another–a word, a head nod, flipping of a switch, or reading the twinkle in one’s eyes. Each of these is an opportunity for interaction. Working with my non-verbal students taught me that.

Still, how do I tell a casting agent that I may have difficulty talking six weeks into the rehearsal process? I don’t audition if I’m in flare. If I’m healthy, I do, with the caveat that I may need to be mic’d or alter my blocking. I’m proof it can be done. I communicate my needs. It sometimes feels cringe as my students say, but I do it.

About two weeks ago, I was swiping through Hinge. I miss the days of in-person dating. Meeting in a bar or rehearsal, you knew what you were getting, superficially. There was no “if I cock my head to the right and close my left eye,” he looks like his picture. Words and intonation were clear. He’s sarcastic. He’s warm. He’s jaded. He’s open-minded. These things were on display, and you exchanged numbers and explored if the floor model matched what was under the hood. There was intonation.

My profiles feature a mix of photos of me standing unaided, using a cane, and in a wheelchair. I don’t mention which I’m using unless it comes up in conversation, but just like acting, how and when do you say, “I’m sick?” With my ex, he knew I came with a cane, but I didn’t dive into the illness on date one; I simply said, It’s a nerve thing until I knew his intonation matched the vibe I got as he tried to Heimlich me over nachos, when I was only choking on my spit. I knew: keeper.

The Hinge conversation turns to a career shift. Why are you moving away from full-time in-person teaching? The illness reveal feels natural, based on the humor and warmth I felt six hours ago. But then, something shifts. He reveals he manages a large team, many of them remote. I tell him I’m nodding as I listen. He boasts that his employees are intimidated by him and can’t wait for his office to return to full in-person operations.

Red flag.

I think of the Spoon Theory, a widely used metaphor in the chronic illness and disabled communities (amongst others) to describe energy expenditures for daily activities. You may have heard folks refer to themselves as “Spoonies.” I never fully used this metaphor to explain myself, but I respect it and understand it. I attribute my energy to a bank account. How much money do I have to invest today? What will I invest my money in? Who will I invest it in?

As I type this piece, I see why spoons are a great metaphor. “I’ve used all my spoons for today” sounds better than saying, “Baby, I’m broke. Try me in two weeks.”

Tonight, I don’t reveal that my bank account is running low. Instead, I shift from illness to connection. Humans are meant for connection and not isolation, but I believe it’s up to us to choose who and when we interact with. If we can do our jobs from home and the job doesn't require face-to-face interaction, why not let someone spend their money, their investment, on family, friends, or their cat? If the work gets done, that’s our investment for the day.

A rapid tonal shift to “that’s where you and I disagree.”

“How boring would the world be if we all agreed?” I offer.

I’m waiting for the warmth in our earlier conversation, or at least a cogent argument we can discuss, but there is only anger, not directed at me, but at something in the world. If we were in person, I feel this would be when he would roll his eyes as he degrades his unnamed team. I begin to feel bad for these unnamed faces.

I check the time. It’s getting late, and this investment opportunity only presented itself six hours ago. Is the investment worth the possible return? How much am I willing to give at this stage?.

Darkness fills my window as the sun retreats. I receive a note from a former student. A young man who saw me struggling to get words out in class one day and walked to the front of the room where I sat in my wheelchair and said, “Mr. S, would you like me to read the slides for you?” Tonight, he shares his creative writing with me, though I’m no longer his teacher. That’s where my investment lies tonight–in a beautiful poem with the sky as his backdrop on the page I pore over with a smile.

I say goodnight to my Hinger and swipe right. I went with my gut on tonight’s investment.

Photo Credit: C. Saucedo, 2023. Showing my students what I looked like in a wheelchair after begin out for a week with a major flare-up.