On Permission

I’m a recovering over-achiever. Hustler. Striver. But if you’ve been reading my columns for a while, you probably already gathered that. Growing up, I always sought good grades and glowing remarks, the confirmation from others that I provided something of value. Beyond those learned habits of my youth, I love the sense of accomplishment, the fruits of hard labor. Feeling that inner recognition of a job well done is a gratifying and empowering gift, propelled by the alchemic combination of grit, intellect, and creativity. But merge that tendency for hard work with a love of the job and it makes for a lethal combination of all work with no play. Well… maybe a little play — I do trade in the theatre, after all!

Therefore, you can imagine the psychological curveball when the medical world impressed upon me the need for more rest. With lesions interrupting the normal neural conduits in my brain and a barrage of daily MS symptoms on the horizon, I needed to adjust to the reality of living with a chronic illness and the fatigue it was guaranteed to deliver. 

And they weren’t kidding: fatigue is no joke. 

To get a sense of fatigue’s infringing consequences, take a look at the disparity between my pre-MS work hours and my current MS-affected capacity. I went from working sixteen hours every day, socializing a handful, and sleeping the minimal difference within a 24-hour period. Now, I sleep for ten to twelve hours, rest for at least six, and, for however long it can be sustained, socialize or work in the remainder. That’s practically a 180-degree reversal. 

Adjusting to that embodied u-turn does not come easy, especially when every morning’s baseline is different than the day before, resulting in daily recalibrations of just how much (or little) fuel is in the tank. As much as I would love to launch into hyperproductivity with each and every sunrise, I’m forced to take it extra easy more days than not. Therefore, I’ve had to assemble an arsenal of ploys to trick my mind into accepting downtime.

Reading is a go-to favorite. Nonfiction and big think books for when I’m feeling aspirational. Memoir and fiction when I’m ready for sweeping emotions. Short stories, essays, and murder mysteries are excellent for those days where my attention span is running a little short. However, among a host of other symptoms, MS can deliver vision problems. Some days, my vision blurs. Some days, I see an aura of stars shimmering continuously around the edges of my sight. And then, on all days, a thinly scratched line tears through the center of my field of vision. With such a range of spectral obstacles, reading isn’t always a feasible option.

Luckily, audiobooks are an excellent solution for when I’m craving expansive narratives and crafty wordplay, but my eyesight isn’t playing along. Bonus? I can listen with my lids shut and don a chilled eye mask, adding extra relief to combat the radiating heat of nerve inflammation.

I wish I could leave it at that, with a sunny solution for bad brain days. Unfortunately, multiple sclerosis rarely plays fair. Not every symptomatic combat yields a peaceful storytelling solution. Oftentimes I’m forced to stomach my general aversion to the couch potato image and nestle into the blanketed sofa, striking a deal with the television and resorting to streaming a show or two. Or five. Or, even, at times, twelve. 

This causes a grand mass of shame to bloom in my core, that whirlpool of secrecy, silence, and self-judgement, and I attempt to quelch it. As Dr. Brené Brown, shame researcher and vulnerability expert, defines it, shame is the “intensely painful feeling or experience of believing that we are flawed and therefore unworthy of love, belonging, and connection." I get that. On those lazy, couch-ridden days, watching the active world from my phone or my window, I find myself feeling plenty disconnected. Cue the shame spiral.

Luckily, it’s not all doom and gloom. Dr. Brown also asserts that shame can’t survive when it is voiced to others. To be sure, sharing insecurities takes courage. It takes vulnerability. It’s not always easy, but I’ve learned the merits of exposing my softer sides.

For half a dozen years, I kept my disability status tightly close to the chest, ashamed of what other people would think if they knew about the limitations delivered by multiple sclerosis. That fear crippled me into secrecy, bound to living a lie of omission. What I hadn’t realized was that doing so would deliver more fatigue than if I were open about my need for extra rest. So I gave myself permission to tell the truth. That gutsy alternative of sharing the disease’s psychological burden lightened the load. 

Possible moral? It pays off to be honest and to tend to your particular needs. Accessibility and production do not need to be mutually exclusive. Ambition and limitations can cohabitate. And, in the end, the less you hide, the more you live. Of course, hearing a moral doesn’t necessarily mean that the lesson is adopted — especially for a stubborn bull like me. 

Until then, I’ll keep calling on excuses like “historical research” and “acting critiques” to watch the entire series of a period drama. And, on the occasional rainy day, I’ll grant myself permission to binge hours on end of Emily in Paris. Merci bou coup!