Even in this time of social media, in this time of Facebook and Twitter, in this time when people will post the most personal of information, even in a time when people blog about their own terminal dis eased journeys, most of us still need to keep private spaces and public faces. It only makes sense to withhold some vulnerabilities behind a public face, masking the turmoil beneath the façade, holding back, demonstrating the wisdom of personal protection and smart boundaries. After all, if we did not maintain a sense of face, then answering the question, “What is wrong?” would colonize our waking hours, even in this most socialized of media times.
My old normal self, when professional considerations dictated the logic of private spaces and public faces, invested enormous energy into the look, the feel, the armored uniform of façade. Now, it would take so much more energy than is mine, just to construct the mask, let alone maintain it for any length of time. The old normal is just not available to me. And yet I still find myself attempting a public face that hides what is going on underneath the surface, in spite of the energy required.
Old habits die hard.
My private-space, public-face condition is especially called out when I meet people I haven’t seen for a while. As they greet me, they invariably will make the observation, “You look good!” Focusing on some superficiality, an article of clothing or my glasses or the color in my face or the smile that belies the dis ease, they are seemingly and genuinely surprised, leading me to think that they believe ALS should ravage its corporeal host in a more horrifyingly obvious way (I cannot imagine). For those that I see on a regular basis, who note the subtle changes as they happen, such interchange is rare, but for those who have not seen me for a while, who perhaps are following my journey through these writings or through news from family or friends, the likelihood is to privately note the losses and publicly proclaim the “good look,” even though the loss is obvious. It is only too human to hiccup some nicety about looking good.
I really can’t blame them. I would do the same, and I have.
I suppose if I was pale and sallow, if I had lost copious amounts of weight or gained full on bloating due to chemo or radiation treatments, if my hair was falling out, if my skin stretched skeletally across my bones, then the ravages of dis ease would be more apparent. But ALS isn’t like that. It moves insidiously and for me, just slowly enough that I can “look good” for a little while, although a little while seems like all I’ve got.
I’m not sure how to respond to “You look good!” Usually, I thank the person and try to think of a way to move the conversation away from my appearance. It is as if they perceive the energy I can no longer muster, a cipher of my former days, a tome to appearance even though God knows I’m already self-conscious enough. Over the past two years I have lost most of my arm and leg muscles, a lot of my back muscles, my abdominal muscles. I am reborn in outward appearance – big belly, skinny arms, skinny legs, weak neck and heavy head atop the whole package. Or perhaps a different way to characterize this new appearance would be that my belly is Buddha-like, although I cannot claim the same inner peace for my life outlook.
I have ALS.
There are variations on the public call out of face. We humans cannot help ourselves. We probe with questions like, “How’s it going,” or “How ya doin’?” not expecting any answer of substance. But for me, such inquiries are fraught with danger. I parry and dodge, usually with good nature and glib honesty, “Oh, I have ALS. But other than that I’m doing great.” There is truth in that answer, but it isn’t comfortable. Neither the question nor the answer lend themselves to the easy repartee that a couple of able-bodied human beings with no terminal illness on their conscious horizon, laughing and joking with one another, would enjoy. The longer I wait to answer, the more uncomfortable the space becomes. Most of us don’t reply to “How’s it going” with complete truth. But the honesty in the answer I have constructed, as glib as it might be, is about the best I can do, and I have to admit that at this point honesty means much more to me than emotional comfort.
I suppose you could accept a biblical interpretation: “Ask and ye shall receive.”
Inherent in questions of state of being are questions of identity. Matt Sanford writes, “What is identity in the face of a radical disruption? Who was I? Who am I? Who will I be? Truthful answers to these questions often take years and years to realize.” There is no question that ALS is the “radical disruption” in my life, and I am often brought up short with the consideration of the real question at hand. “What makes life so sweetly worth the living, something worth the good look, when death in all its ALS forms sits so clearly on your shoulder?” The implication is clear–any outward manifestation of life is inappropriate in the face of terminal dis ease. And in spite of myself I have to admit that it is a fair question. My life has become a search for anything and everything that might balance the knockout punch of ALS. It’s “radical disruption” must be radically disrupted so that a good day is defined as one where the necessity and presence of ALS are balanced by the light of family and friends and music and love.
“You look good!” “How’s it going?” “How ya doin’?”
The human condition is a delicate dance where good and bad, joy and sorrow, sickness and health, dis ease and comfort are neither mutually exclusive nor fully integrated. We are everything and all things, and we are nothing. To say that ALS has taught me to dance might seem disingenuous to some, even ironic in its bold statement of fact. After all, I no longer walk, how can I dance? But the dance dis ease bestows is one that all humans must experience in order for life to be fully grasped in its overall messiness and complexity, its delicious chaos. It is the gift of humanness and free will. It is the gift that takes the focus off of avoiding death, and instead presents a choice – either wither away in the horror or seize the gifts that life and dis ease bestow. It is a balance between the heavily tolling march of dis ease and the balletic leap of living joy.
I don’t look good. My muscles atrophy and my strength wanes. Yet each day my heart is is full through friendship and love and warmth, radically disrupting the radical disruptions of the good looks of ALS. Looking good isn’t about the face or space.
It is the disruptive blessing beyond the look.