Looking Good

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.

Elegy

When Ev and I were 26 we moved beyond United States boundaries to Norway. We had with us our 14-month-old son David (Jon would be born three years later in that oh so special country), a thirst for new adventures and the fire in our bellies to become great educators, the teachers we wanted to be. And within a week, we had met so many others like ourselves, green and young and excited, as well as a few people old enough to be our parents, but still excited nonetheless.  And we knew we had made the right decision. Within two weeks, we began to recognize the wisdom and life experience in some of those our parents’ age, and we realized that all the young teacher energy, all of the young teacher synergy, could not hold a candle to the force that was one of those couples, John and Ruth.

I’m not sure what it was exactly, but I think our respective families would say that we fell into each others’ lives at just the right time. Always respectful, always mindful and full of enthusiasm, John and Ruth became to us the parents and grandparents we ached for so far away, and likewise we became the children and grandchildren close by, when their own children were equally distant as our families. If that were the end of it, it would have been a beautiful narrative, a time together defined by circumstance and geography and travel and adventure. But there was something else between us, something that allowed us to turn each other free from living in a place we all had come to love, to living in new places that we knew we could share in some endeavor greater than what we had known before.

You see, in our story, we were meant to find John and Ruth, to interweave our lives with theirs off and on but always keeping track.   Each of them brought something special to any situation shared. John loved a good story, good food and good company. Ruth brought an eye for the beautiful, an ear for that which was the most lovely in human interaction, and most of all a sensibility that every moment would be a special moment if we just paid attention. I could speak of each of them for hours, but at this time I need to focus on Ruth, beautiful and sensitive and grounded Ruth.

There are so many things that I could say about Ruth. I know that for every story I would tell, sons and daughters and friends and neighbors and acquaintances and first timers would nod knowingly, eyes lighting with the joy of being in her presence, inspired to share other stories a hundred and a hundred times over. I will share two, knowing that there are thousands.

When we lived in Egypt, John and Ruth  visited us at our home. I have never seen any one person wring so much out of one week in one place as Ruth in Cairo. One of our friends had concocted a 24 hour Sinai tour that he would give for the not so faint of heart, and he and Ev decided to take John and Ruth out on this grueling, no sleep circuit. It began at St. Catherine’s monastery at the base of Mount Sinai. One would awaken to be on the paths by 2:30 AM so that the sunrise could be experienced from the top of the mountain. On their way back down, Ruth was stopped by a man from Japan who asked her politely her age. When she told him she was 66, he just shook his head as if to say, “how could I ever possibly keep up with someone so fit?” What he didn’t know was that two hours later Ruth and John would be snorkeling in the Red Sea and then taking time out in the desert looking at rock formations. And as we all know, Ruth’s hiking only got better with age.

A second story is a little more personal. When Ev and I were in our third year in Norway, Ev miscarried. We were devastated. In came the community led by Ruth, not so much to make it right or to offer any kind of silly observations like, “God must’ve really wanted that baby,” but instead just to offer company and attention and a meal and assurance that while we were disappointed and sad, it would get better.  I know there are much more special stories about Ruth – stories of invitations into homes of people she had just met, stories of friendships maintained over years and years and years in Libya, stories of parties and gatherings that were so right that one could only marvel at the woman who had thought through the remarkable detail of these social occasions, and most of all, stories of a woman in love with the Middle East. But the Ruth I know is the Ruth who understands the joy of being, that sometimes being is all we’ve got, and that is a powerful story.

I suppose that there is nothing I could relate that would add to this beautiful story of Ruth except that she taught me how to keep a sense of wonder, to be brave in times where self-consciousness ruled, to value the beauty in the individual human no matter who he or she was. Ruth encouraged me to be grounded, feet firmly planted in my history both good and bad. Ruth cheered me to soar with wings opened to the sun and wind and rain of life’s wellspring. Ruth could laugh in a way that lifted my heart, and two sentences later cry tears tinged with the joy of  life fully lived. And she freely gave the knowledge of just how one does that — so that I learned to laugh in a way that lifted my own heart and to cry tears that told me that life lived in wonder and awe was my privilege.

After I was diagnosed with ALS, John and Ruth were two of the first people we called. I loved how matter of fact they were, how easy they were to talk with, how they focused on a healing future, how they wrapped their prayers around Ev and me. After our first visit at Mayo in which my diagnosis was confirmed, we scooted over to La Crosse to see them. And there was Ruth with a special meal, a place of warmth, healing for the unhealable, with laughter in the face of fear, and with tears that soothed confusion in reassurance that love is greater than all things.

And this is the most important thing that Ruth’s life teaches me. She was and is and always will be the greatest reassurance, that love stands when all else falls, that love is present when presence is remote, that love is the best way, the only way to reach out beyond the confusion of what it means to be human, that love is the holiness humans are granted in proof of God.

When Ev and I were 26, and we moved to Norway in search of the great adventure, we never believed that the great adventure would be eternal love shared, but that was our discovery.  And for us Ruth will always be that eternal love.