It’s been one year since my health took its latest turn. Perhaps it was a relapse. Perhaps a pseudo-flare. Perhaps the label does not matter. What does matter is the forced time-out that was pressed upon my brain, my body, my being. That unrequested pause which, once again, prompted a tangled swirling of resentment, introspection, and revelation.
Living with relapsing-remitting multiple sclerosis places one in a perpetual predicament of waiting for the other shoe to drop. And then apprehending another shoe. And another. MS patients do not have one single pair of shoes. They have a warehouse full. The shoes will always threaten to rain down. While this analogy may have thrilled my footwear obsessed teenage self, it does not deliver any joy today. It only brings forth an ever present state of anticipation. Finding suitable coping mechanisms for this unrelenting game of slow motion whack-a-mole is an experimental act.
Of course there are the healthy recommendations - mindfulness, exercise, healthy eating, yoga, therapy, self-care, journaling, social activity. Optimism is a mighty tool in fighting the anxiety of remission. So are drugs - the doctor prescribed kind, I mean. Duloxetine (generically known as Cymbalta) is an excellent tool in my disease management. It serves the dual purpose of increasing mood-enhancing neurochemicals in my brain while inhibiting certain neuropathic receptors. Then there’s my DMT - the disease modifying therapy that does the lion’s share of keeping MS activity at bay. It is not a cure, but I trust in its ability to mostly ward off relapses. Unfortunately, all efforts aside, relapses still arrive, bringing with them a slew of testing, scanning, medicating, and temporary, but exhaustive immersion in the healthcare rigamarole.
Often I turn to activism in the immediate wake of a relapse, taking to social media with photos from the hospital, snapshots of MRI scans, 140 characters of medical malaise. This is my attempt to be seen, to connect with someone or something other than the conflict inside my cells. It is also a cry for others to cast their attention onto the inequities of our healthcare system. In this act, I allow my illness to clothe me in an identity of sickness, my face becoming an emblem rather than a window to my soul. It is a performance that has its merits. But I do not hold the stamina to keep up the charade for long.
Once the activist streak ebbs, I recoil into an extended womb of rest. My bed becomes my cocoon as I hibernate for sometimes weeks, more often, months. Whether burdened by the aftereffects of a relapse and its subsequent steroid treatment, or simply the cumulative exhaustion of day-to-day existence, I find that I yearn to power down. Turn off the computer. Cancel all social engagements. Silence the cellphone. Give me a digital retreat, a stimulus detox. Let my nervous system heal.
The ambitious doer in me hates this stage. She wants to get on with things. She identifies as a mover and a shaker, an accomplished individual who always accomplishes great things. Rest is her enemy. Reconciling the dualistic personas inside me - the executor and the outpatient - is no easy feat. I used to facilitate this divide with addictive tendencies to overwork, over-exercise, overindulge, over-imbibe - anything to deliver that added kick of dopamine and stress-induced adrenaline that would propel me to the next day. Luckily, I’ve grown slightly wiser with age.
I’ve spent the last year giving deference to my recuperating self, honoring her need to rest. Ambition still teases me, it likely always will. But I have also come to better acknowledge that no great feat can come from an empty vessel. Maybe one day I will return to the bespectacled realms of musical theatre or the whirlwind life of a world traveler. Maybe not. Maybe a new wellspring of community engagement will bubble from within me. Maybe not. Maybe, rather than grinding myself into oblivion, I will instead establish a slower pace. Maybe I quell the hustle, the drive to be the best, the endeavor to soak up the spotlight. Maybe I dampen the excessive activity that beckons from my former life. Maybe now I discover new ways, sustainable ways, to share my voice and make a positive impact in the world.
I’m slowly waking up from this months-long slumber, my personal winter of healing. I am still tired. I will never shake the fatigue. My limbs still crawl with burning sensations, numbness, pins and needles. They will never escape this neuropathy. My mind still fogs. My vision blurs. My bladder urges without notice. These symptoms will not dissipate. Nor with the hiccup in my gait, the ever encroaching depression, or the pages long list of additional MS manifestations on my blotter. But I can adapt. My schedule and activities can acclimate to the placid tempo of my body’s tortoise pace. I can extend myself the grace to decelerate, to arrive in the moment with calm and serenity.
And Here, as I come back to this state of presence, I can write.
To quote the celebrated playwright Will Arbery,
“A return is wonderful. It’s coming home.”
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