“Illness is the night side of life, a more onerous citizenship. Everyone who is born holds dual citizenship, in the kingdom of the well and in the kingdom of the sick. Although we all prefer to use the good passport, sooner or later each of us is obliged, at least for a spell, to identify ourselves as citizens of that other place.”
― Susan Sontag, Illness as Metaphor
Recently, I had the honor of participating in a local storytelling event centered around the theme “Where We Belong.” In my preparation, I considered the differences of physical belonging versus psychological belonging. Do we comprehend what it means to belong by examining our citizenship in a specific location or environment? Or does the true exploration of “belonging” act itself out in the figurative playgrounds of our hopes and dreams? After all, our physical surroundings have limits, but our imaginations are endless. In seeking answers to these queries, I looked to my past in hopes of unearthing some tiny seed of comprehension.
Like most young adults (I imagine), I aspired to a limitless future. Possibilities abounded. Potential was ripe. Then an autoimmune disease crashed in, delivering an abrupt and sterilizing dose of constraint. As such, the better part of my twenties was spent seeking equilibrium on the seesaw of chronic illness, managing the whiplash of good and bad days, and reframing my comprehension of limits and ability. So I adapted. I analyzed my circumstances and molded my choices to maximize my degree of impact - with a decent amount of success. And, in an unexpected way, I slowly was able to regain that limitless mindset.
You see, from 2015 to 2021, I was graced with a relapse-free life in which I could trick myself into believing I was cured of my multiple sclerosis malaise. Unfortunately, my recent state of health affairs has returned to that sliding scale of healthy and ill, of active and bedridden, of influence and absence. I’ve surrendered weeks to the recoil of a compromised immune system, to my physical form’s splendidly hospitable affinity for undesirable viruses and afflictions.
While my body battled one infection after the next, I endeavored to master my mindset, to make the most of the flashes of health. I would embrace the generosity of friends and family with thanks rather than resentment. I would find the strength to leverage my story for healthcare advancement and positive change. I would even attempt to turn my hospital room into a meet-cute, asking out a nighttime nurse at 3 a.m. as he administered a dose of aggressive antibiotics into my veins.* All of this is to say, I was insistent on making a home for myself in this ailing realm.
The real dilemma, I’ve come to find, does not lie in owning this patient status, but in living life as a sometimes patient. It’s not so much a matter of accepting citizenship in the kingdom of the sick versus the kingdom of the well. Instead, my struggle battles it out in that liminal space between both kingdoms. (Full disclosure, I cannot take credit for this genius phrasing - that all goes to Suleika Jaouad, author of Between Two Kingdoms, a book that I highly recommend.) Ascertaining where we belong is not black and white, it’s not being fully well or fully ill, nor is it the perception of physical being versus psychological being. Existence is far too complex to reduce down into such simplistic means.
And yet, our categorical minds love a binary. Societally, we find comfort in the This or That. Finding belonging in the in-between is not an act that comes naturally. However, I question whether anything truly lives in a realm of concrete stasis. This leads me to posit that “belonging” maybe isn’t a point of arrival, but an acceptance of process, of fluidity. Perhaps, true “belonging” exists in those brave spaces where one feels secure and supported enough to be uncertain, ungrounded, unsure - yet still present, graciously showing up with a desire to make the most of that exploration of the unknown. And through this act of audacious curiosity, one could venture, a stellar new universe of limitless possibilities exists. I certainly hope so.
*For inquiring minds, as humbled as he was by the invitation, the nighttime nurse was in a committed relationship and his partner probably wouldn’t have been too happy about him accepting my request for a date. I still count this as a win, though. It is a courageous act to put yourself out there - especially when you’re on day five of cleansing wipes, dry shampoo, and hospital gowns!