The Look Of Love: A Sign Of The Times Part Two

Part Two (click here for part one):

In life, our commitment to one another is a choice, one that can't be made in the abstract or ahead of time. It's a moment by moment act grounded in love and empathy, and free of ego. It's one of the most transcendent of human traits, and since my accident my days have been awash with it.

For the uninitiated, the relationship between personal caregivers and folks with a disability will largely go unnoticed. As the title would suggest its personal care, and as modern human beings our personal care most often takes place in private. This is no different for folks living with a disability--except depending on the disability--the most personal aspects of our self care (peeing, pooping, bathing, dressing, etc) involves the assistance of another.

From a purely physical perspective, this can be a humbling thing to reconcile. We live in a culture that worships at the altar of self-reliance and independance, and so when this is perceived to be taken away from us it's often considered a deficit. But in my life, anyway, I can't help but see it as a gift, and like the best gifts it wasn't something I asked for. Which isn't to say I wouldn't want to do my own personal care, but that the collaborative nature of these committed relationships has a resonant depth and value I can't imagine living without.

Day in and day out, rain or shine, sickness and in health (sound familiar?), folks commit to helping me live my best life. Showing up for a job that's more intimate, requires more nuanced medical knowledge, and more responsibility than most anything else one could choose to do with their time. They possess the most admirable of hearts, and have become dear friends and family.

Since March, two of these close friends—Yudess and Travis—have given up most of their free time and social lives (what little of that there is these days) to help me to maintain some sort of "normalcy", keep me healthy and create a reasonably stable bubble. Yudess, herself, has literally been with me 24/7 (the first six months working almost solo). *Go ahead and insert joke about how this would be enough of a job in itself. Or how she must be some kind of Saint (which she is). I'll wait :-)

They do this not for themselves, but rather out of their love and commitment to me. They've become all too familiar with the anatomy of my respiratory system, and have been with me when seemingly innocuous influenzas have turned into pneumonia and hospitalizations.

Even in the most "uneventful" of times, living independently as a quadriplegic is a high wire act. But during covid-19, it's been like navigating that wire in a windstorm. The actions necessary to keep people safe (especially the physically vulnerable), flatten the curve and give some relief to an over burdened healthcare system, are ironically compounding the hardship for severely disabled individuals like myself.I mention this not to critique pandemic policy but to contextualize how vital the relationship is between personal care givers and those they assist. And how without hyperbole, for millions of individuals around the world, it's the levee between the extreme of institutionalization on the one hand and freedom and independence on the other. Which is to say, our basic needs can't be met without the intimate interaction of others.

Personal care giving, at its best and most organic, is an interpersonal dance of anonymity. And this is what's so beautiful and moving about the relationship, it comes from the most sincere of places—our commitment to one another. But this anonymity means the importance of the relationship, and the societal value, flies under the radar and is consequently under-appreciated in the main stream.I hope by illuminating it in this post vis-à-vis the covid pandemic and my own personal experience, folks outside of intimate friends and family, will have a better understanding of what a relationship such as this means to all of us as a global family. Because in no uncertain terms, it's the kind of union that represents the values we champion, desire to see in ourselves, and hope to see reflected back to us when we find ourselves in need. And we will, one day, all find ourselves in need.

It's humbling to be the recipient of such generosity of spirit; to intimately know the value of such a relationship. Something I don't feel I could repay in 1000 lifetimes. But with this perceived debt comes an overwhelming sense of gratitude. And if one were to find any cosmic meaning in it—and believe me there is plenty to be found—it would be the gift of living from a place of abundance rather than lack. An understanding worthy of endless devotional gratitude.

Over the years—and especially 2020–I've had the great fortune to see, feel, and internalize the rewards of great commitment and know how it changes everything. There have been many good times and challenging times. The good times feeling effortless, as if coasting side by side in perfect sync, the challenging ones feeling as though I'm been carried. I feel as though I'm being carried now.

So perhaps think of today's post as a valentine of sorts, a sincere—and ultimately inadequate—way to shine a spotlight on some folks who mean so much to so many people. Ohana, heroes and saints to be sure. Because If there was anything worth sharing here—especially during this time—it would be this.

Hau’oli makahiki hou and Mucho Mahalo to ALL who've given such a valuable part of their lives to me and so many others! I love you more than words can express! 

If this post has resonated with you at all, please share it. There is beauty in anonymous acts, but I believe shining a light on these heroes could be powerful.