The Ghost of Christmas Past

One of my very favorite stories is Charles Dickens’ A Christmas Carol. While most Dickens scholars see this as one of his lesser writings, I love the social, cultural, economic, political commentary that he so accessibly offers. And even though you would think that at my advanced age I would have Christmas Carol fatigue, each year in the weeks leading up to Christmas, I make sure that I engage with this story in some way. The Christmas season just isn’t right until I get my Christmas Carol fix. The fact that Dickens presents this morality play using the temporal characters of past, present and future is an acknowledgment of how time takes on meaning both good and bad. For me, my present time is framed by ALS so the future is known and just not that scary. But the Ghost of Christmas Past haunts me, for it is in the near past that this time of year inspires my worst regret.

In our family, this is a week of anniversary, in large part because on December 7, 1941 my father-in-law experienced the horror at Pearl Harbor. He was really just a kid when this momentous occasion took place, but it shaped him to squeeze every last drop out of the rest of his life. When he died at the age of 87, he was disappointed that there was so much more he wanted to do. We were as disappointed as he was, and the gumption he demonstrated in both his life and his death makes me miss him so much that I ache. His life was a great example of how a global event, so destructive and horrible, could be used to do good on the local level.

Less globally, it is also an anniversary for my family and me. Three years ago on December 6, 2010, I was diagnosed with ALS. On this day began a life first restricted by disease’s demands and then freed by my acknowledgment of dis ease as both a challenge and a friend. But, you can imagine how difficult it was to honor the upcoming season that year. In Dickens’ words, we suddenly realized how difficult it was going to be to hold Christmas in our hearts. Faced with the demands of sharing our news with family and friends, colleagues and constituents, our hearts were so heavy that I wondered whether there would ever be any celebration again. Thankfully we went ahead with as much of the season as we could muster, putting a brave face of joyfulness on the occasion even though we did not feel particularly joyful.

ALS can be quite the killjoy.

Now in the days around December 6, I find myself reliving 2010 – those days that led up to my diagnosis and the days immediately following. It doesn’t matter that it was three years ago, it doesn’t matter that I have had plenty of time to get over it. It is my own version of PTSD – and the moment of truth haunts me just as much now as anything else from my entire life.You see, it was not the actual news. While that was crushing enough, it was the lack of human connection as the neurologist delivered this blow to our hearts. Of course, he had to tell us. But the delivery of anything as life-changing as, “You have ALS,” should be spoken as humanely and compassionately as possible. This was not the case. Instead, he created an environment so inhumane, so remote, so cold that we left the office without any sense of possibility except total despair. He sat staring at a computer screen, a 6 foot massive desk between us. He dismissed my beloved to a remote corner of the room. He offered no preparation, no real explanation except for what I could pry out of him. In what should be treated as the penultimate moment of human holiness, he protected himself and profanely reduced us to less than human.

On December 6, the ghost of Christmas past sneaks up in the strangest ways.

I recognize that it wasn’t my fault the way the news was delivered, but the fact that I was not in immediate proximity to offer comfort to my beloved still haunts me. I would do anything to take more control over that moment of truth. I would hold the hand of the one I love, I would hold her eye with mine, I would let her know in every way possible the reassurance that I wasn’t going gentle into that good night. I would do anything to stand between the arrogance of his self protection and her dismissal to the corner of the room. And while today, my true love is defiant in the face of the past three years, at that time it put her to bed for almost a month, fearful that every breath she heard me draw would be my last.

At this time of year I wish the spirits would quit revisiting my weakness in the moment when I should have shown the greatest strength.

For years I had the privilege of teaching leadership ethics. Fundamental to the understanding of Western ethics are the concepts of ethical means and ethical ends. In my way of teaching, prying the two apart was possible but not desirable. I tried to empirically show that means without ends were just a nice ramble in the park with nothing to show for your efforts. I tried to critically teach that in the exercise of any kind of ethical leadership, ends without consideration of the means that got you to them would always be corrupted and untrustworthy. The doctor who delivered our news violated these basic ethical considerations. He delivered the goods, but he did it in such a way as to leave us sicker than the original diagnosis. My ghost of Christmas past would have me go back and speak with him to help him to understand the harm that he caused us.

Physically and spiritually, I have progressed far since that day three years ago. In December 2010 I walked in under my own power. Today I need someone to place my hand on the joystick of my wheelchair. While my body is still present, it no longer tolerates the logistical preparations requisite to the places that I would love to go. But my heart has learned a new presence, a new compassion, a new transparency, a new fearlessness that could only come with ALS as my teacher. My progression has been inexorable both physically and spiritually. I have learned relentlessly, and I do not begrudge the learning. The ghosts of Christmas past, present and future continue to engage me with their lessons and carols of simple complexity.

Like my father-in-law, I have sought to take my own trauma and turn it toward some good, to squeeze every moment out of life, to love and to listen and to teach as best I can. I have tried to be a better father, a better husband, a better friend, a better leader. But my inability to stand up to something so wrong, knowing full well how harmful it was to the person who I love more than life itself, who I would never knowingly harm, will always haunt me.

On December 6, Dickens’ story holds new meaning and unresolved regret.

JFK

Last week was the 50th anniversary of the assassination of John Fitzgerald Kennedy. I was in the second grade when JFK was murdered in Dallas, and this past week I have allowed myself the melancholic introspection that comes with diving into the many specials, web streaming, and newspapers from the time, reliving the story as it were. With all of its impact, even 9/11 did not affect me as President Kennedy’s assassination did, and it was with more than a bit of trepidation that I allowed myself this privilege of listening and reading and watching. I wondered if a man of 57 living with ALS would experience the same raw effect as the boy of seven living with the idea of his whole life ahead of him. What I discovered is that not only did the strength of the story hold up, but its meaning was enhanced by the introspective lens 50 years of life experience can bring. What I discovered was that in the assassination was my first experience with dis ease, significant for me for it changed the way that I saw life ahead, and significant for our collective national identity as it began the downward slide of trust in the important institutions that have kept us centered since the great war. For the nation as a whole and for me as a seven year old child, the assassination instilled a fear that at any moment, all might be lost in tragedy and horror.

Pretty heady stuff for a second grader, don’t you think?

I had never seen my father cry  before Kennedy’s assassination. I had never held such insight as I watched my mother struggle so hard to hold things together with the sudden knowledge that she felt responsible to reassure me that things were going to be all right. There was no such struggle  with my dad. He insisted we watch the funeral with his dad, my grandfather. We weren’t allowed to play outside on that day. No one was! On the day of the funeral, the sadness was like a blackout curtain long neglected with dust and tears hidden in drapery folds creased by time, suddenly floating in the air as the curtain was pulled closed to keep out the light and hold in the sorrow. I remember how we watched the marching soldiers, the flag bedecked caisson, and the elegantly dignified, unbelievably poised widow as this great national liturgy played out. No one could possibly predict on that November day how this story, this unbelievable narrative would affect the national psyche in the long-term. In Richmond, Indiana, where I was living at the time, it rained a freezing rain on November 22, 1963, but the day of the funeral was crisp and cold, with a weak sun shining on the naked tree limbs so freshly lost of their leaves, standing bereft in solemn witness to our shock, our horror, our grief, our out of body sadness. We watched heads of state, the first family, their shock and horror and disbelief playing out like taps on a bugle. We watched the country move from the black and white starkness of the announcement that Kennedy was dead to full color, an American flag striped blood red covering the coffin and accompanied by muffled drums, the meaning further underscored by the first color TV that anyone in my family had ever owned. And the grief of my parents multiplied throughout the day of burial, spilling out into the room and lapping against the sands of our own childish sadness in warm waves of tears and anguish.

How can you not be changed by such a propagation of adult tears?

Today, pundits and opinion writers state that the assassination of JFK was the beginning of the divisiveness we now find in American politics. It is a thesis that plays well 50 years later, especially with the benefit of 20/20 hindsight. But it is a thesis that requires answers when in reality no answer is adequate to the task. The assassination of JFK spawned a national angst from which we never recovered. It created a need for assurance, requisite surety from our politicians, our religious leaders, our captains of industry, our intellectuals, our artists. Yet even when they spoke the words, deep down inside we knew that such surety is impossible. When the national psyche, indeed the psyche of the world is so gracelessly torn, it raises the most basic, the most obvious, the most primal of questions – if the president of the United States could be killed by such a little man in such a public way, what does that mean to my own safety? And when personal safety becomes the primary focus, then humanity is left open to all kinds of manipulation — from secret wars that defy our moral bearing to susceptibility to the ringing rhetoric of a polished statesman. We became a people that denied the reality each one of us faces. We denied our dis ease, and in the denial came an every person for themselves isolation and loneliness.

The assassination parallels in so many ways the diagnosis of a mortal disease, choices proffered in black and white, morphing into blood red realities that are stark yet not easily discernible. Disease divides us from each other, tricking us into believing that our safety is no one else’s concern and that we are terribly alone. It leaves us susceptible to the need to hear only what we want, what we fear, to deny the reality that is, to seek individual cures and turn our backs on collective healing. Our national angst turned into national denial. It became our national disease, and the more we asked of our leaders, the more lies we heard, the more isolated we became, and the less we received.

The choices of dis ease became the loneliness of disease, and we were sore afraid.

One does not need pundits to argue that faith in government, religion, schools, universities, business, and a whole host of other institutions would never be as strong as it was in the days before November, 1963. We are not just divided, we are alone. Lonely people make desperate decisions requiring greater assurances, greater flights of fancy, greater denial of probability, greater lies that underscore the greatest lie of all—that we can go it alone. November, 1963 was a dis ease moment, a place where we could choose to embrace each other in the collective space of spontaneous humanity or embrace loneliness with the false promises that our national disease and hence our individual angst would be cured. In the days, months and years that followed, we chose to believe that we might be immortal, that this life could be so easily controlled as to remove all spontaneity, all chance, all the bad things, to eliminate any possibility that our princes and princesses would ever be gunned down so easily again.

Dis ease offers choices, disease offers lies.

The Kennedy assassination resonates in the timeless ether of five decades. It plays a polytonal string quartet in the keys of dis ease and disease. On the one hand, it tells us that life’s ease is fleeting but choices abound for us if we will turn to each other. On the other, it tells us that we are alone but somehow we can beat our fate. One key is a key of truth, and the other is a harmful falsehood. ALS, my teacher, requires me to unlearn the lonely lessons embraced fifty years ago, and to sing in a key of beautiful, human, messy, vulnerable space where each of us is afraid and no one knows any fear.

It is a place where mothers and fathers cry in front of their children, and their tears heal the hurt.

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.

The Winds

On the first weekend after Labor Day, the sky is clear and the winds carry that unmistakable taste of autumn—a tang of tannins and a hint of plant matter, somehow pleasant yet foreshadowing winter’s icy cold.  More than just a cooling breeze, these winds are open the windows winds, rattle the shades against the frames and sills winds, rustling rearranging paper long accustomed to an undisturbed piled existence winds.  They are lifting and twirling, cooling and clearing winds, and while they reorder the physical space in which I live, today they also reshuffle my psychic space so I now need some kind of grounding weight to keep me in place, to hold me centered here and not blow into darkened dwellings. The loss experience defined by ALS is an autumn wind chained to the feeling and thinking and desiring and doing that defines the person I still want to be, yet symbolizing a dis ease power to strip all coping away, leaving naked experience shuddering and jerking like chimes wildly dancing in zephyred abandon so that vulnerability and chaos emerge in the autumn to winter smells—tannins and plant and crunch and sun.

Occasionally, I dream of biking these head winds, more a dream of the feeling of wind, gusts against my face, whipping my hair, pushing against me as I ride, its resistance torking the bike frame and gearing dusty grit that stings my shins and bounces off my eye shields into the crank and chain and derailleur.  Pre-ALS, when I rode to and from work, home was against the stiff west winds that whistle into the Twin Cities with nothing but the prairies between their somewhere in the Dakotas life source and the urban cosmos that finally trips and funnels them into so many swirls of channeled currents, playfully strong.  I used to think of this as a trial to be accomplished, and there were many evenings I found myself lowering my head, pushing hard to push through, the wind resisting my efforts, though eventually allowing me passage. How I wish I had seen the wind for what it was—a statement of health and empowerment and strength, rather than another impediment to an easy ride.  How I wish I felt that empowering resistance again.

What I didn’t know!  

Sometimes in the middle of the night as I rouse from first slumber—lusciously mid-conscious between sleep and wakefulness, thinking I have been riding against these winds, believing for just a moment that ALS is the stuff of dreams—Ev rides on my rear wheel, drafting off me.  I experience the joy of blocking for her as we careen our way home.  Such vulnerable moments, for when realization dawns, the head wind ride retreats into the recognition of fading memory of activities still present in my dreams but utterly gone from the physical being that I have become.  As if to punctuate the loss, my legs are now even heavier, my arms and hands weaker, my ability to adjust and turn in bed lessened and my joints and bones aching from sleep’s position held too long.  I hear silent weeping in my mind, and I realize I am crying for what cannot be again.  Sometimes, Ev hears it too, and she pulls the covers back over me, adjusts my pillow and kicks the cats off the bed, pats my arm and falls back to sleep only a little disturbed.  Such is the stasis and peace out of dreamy regrets. 

In waking, I draft on Ev while she positions herself between the headwinds of life and me.

This week, in the face of what would have been a mere challenge in my old normal life, the winds of ALS stripped away all pretense that I still own such capacity.  I have known this truth almost since the day of my diagnosis, but as the human I am, I often need to be reminded of the fact.  I spent years constructing all kinds of facades, persona, roles projected as needed for the task at hand.  It was almost like being an oversized, organic iPad.  Does today call for quiet confidence?  Whip out the app and take over the room.  Is it time to project suitable irritation at bureaucratic stupidity?  There’s an app for that too.  “Applied Pretense”–what one reviewer calls, “the app you really cannot live without,” is available in the App Store with an average five star reviewer rating.  But ALS, like the autumn wind, blows all this technique, techné into the dustbins of failed humanity.  If you approach your life thinking there is a suitable screen that will take care of it, ALS becomes the vortex that dashes that screen into smithereens, drilling you down to the essence of your being and voiding any such cover you might have thought you owned.  

The purity of a life imposed upon by ALS makes the apps approach to success irrelevant.  It exposes the gold of life experience like a refining fire consuming the dross we work so hard to project.  If unrelenting stress is bad for human beings, then ALS makes conscious the reason why.  For me stress has become the purely physical phenomenon it is—body shivers with increased muscle fasciculation, narrowed eyesight into tunnels of diffuse yet centered light and darkness pressing in and around.  And once through the initial angst, I am exhausted beyond all physical belief to where I can only lean back and try to sleep enough of it off to bestir myself only a little bit.  Stress is cumulative, but only with dis ease have I truly known its accumulation. And with ALS, coping mechanisms such as a nice swim or run, or yoga pose to clean it out is impossible.  Like the wind, ALS rearranges the environs, sweeping clean any pretensions of control over the stresses of day-to-day living.

In “The Windhover,” Gerard Manley Hopkins speaks the power I know in these blasts and gusts:

As a skate’s heel sweeps smooth on a bowbend: the hurl and gliding 
Rebuffed the big wind. My heart in hiding 
Stirred for a bird, — the achieve of, the mastery of the thing!  

Brute beauty and valour and act, oh, air, pride, plume, here   
Buckle!  AND the fire that breaks from thee then, a billion 
Times told lovelier, more dangerous, O my chevalier!

Big winds blow through life, and I so wish I could be the skate’s hurl and gliding that rebuff the squalls and gales of their concentrated air.  I have tried to keep my heart in the open, stirred by “the achieve of, the mastery of the thing.”  But life experience now has such intensity, that to experience it in such purified state overloads any capacity for control I might believe I have.  My ability to project the iPad app screen of applied pretense wanes, leading to a new space of taking in only what I can receive, a little at a time.  Autumn moves to Shakespearean winter—“Blow, blow thou winter wind, thou art not so unkind as man’s ingratitude…” 

And I must learn to be more thankful for the blows to come.

Nine Days in Italy

For nine days, Ev has been in Italy.  If you are looking for a tome on love unrequited or on just how long nine days can be; that isn’t going to be this little musing.  There are some things I choose to keep only for me, and while it may be clear that I miss Ev, I will spare you such prose.  But there is so much that has happened in the past nine days, such material, and yes such memory.  Travel has always been a priority, so the fact that she is in Italy and I am not, should tell you something, for such travel is probably beyond me now. And reflecting on our travels together, or on the fact that I am not with her is a new moment in dis ease for both of us, one that we anticipated, but never fully grasped.

There is an anticipation and preparation for travel that can be every bit as enjoyable as the travel itself.  The time leading up to that moment on the plane, the boat, the train, the car is both anxious and sublime.  When we first began to travel, we didn’t know how lovely the anticipation could be.  Even now, it is easy to lose that sweet perspective, even when you have the experience of preparation many, many times over.  And knowing how the anticipation works was not something that was easily learned.  Over time, I came to appreciate the joy of planning, of shaping a framework but not too much for the upcoming journey, because travel always reshapes the framework imposed upon it.  One of the things that travel taught us was that no matter how careful the plan, how detailed the itinerary, there would always need to be times of improvisation to account for the unanticipated reality of plans gone awry.  Some of the best experiences we ever had came from these moments, and some of the most frustrating.  The sweetness of dreaming the anticipation was that in the plan, everything worked. The joy of the travel was that it didn’t.  

And over time, we got better and better at anticipating the things that might go wrong, and the things that might not.  Our first transatlantic flight was the leap of faith that brought us, young in our marriage and with a 14 month old baby in tow, to Norway.  God what we didn’t know.  Poor David cried the entire trip (yes, we were that family on the plane).  I am now convinced that he was reflecting the anxiety of his young parents leaving everything we knew, like a mirror on our souls.  While it was always challenging to travel with young kids, it was never like this again.  We learned to reflect pre-travel anxiety only to each other, to plan for his  (and later Jon’s) needs, and trust that aside from the occasional incident–for example, once in Copenhagen, Jon managed to pull a computer down on his head at the check-in counter so SAS staff rushed him into the city proper for stitches and delivered Ev and the two boys directly to the plane just in time for takeoff–things generally worked out.  Travel teaches you to pack light with an extra pair of underwear in your carryon, knowing that in the most uneven grottiness of unwashed bodies for days on end, some evenness can be achieved.  This was always part of the beauty of travel, for we learned that in some way, we would get things back to some sense of stasis, some semblance of normalcy, some comfort level with which we could live.  Such knowledge is helpful in a storm.  

I don’t want you to think it was all challenging; some of the travel we have done has been sublime.  I still count our last weeks in Egypt, of which we spent 7 days camping on a beach on the Red Sea, as one of the most wonderful weeks of my life.  We undulated between watching satellites and shooting stars by night, and by day, snorkeling in the vast beauty of Red Sea coral, Napolean wrasses, parrot fish, angel fish, dolphins cresting, and remarkably dangerous animals–lion fish and sea snakes–warning us to be respectful.  Eating, sleeping, bathing, talking, laughing in this wonderland of incredible beauty with the desert all around us and the sea beside us, was a time I will never forget.  We were with friends on the beach, friends who had done this many, many times before.  And they guided us in so many ways, both in how friends spend a week uninterrupted together as well as what to see and how to protect ourselves from the relentless sun that illuminated occasional awkward moments.  Such is the height of friendship.

And some of the travel was remarkably affirming.  When we flew to Bali from Minneapolis for the first time, the comedy of errors that was both the flight to and from Denpasar would have knocked the most seasoned adventurer for a loop.  We took it in stride and became smitten, enamored of this remarkable island.  Bali is a place that teaches the importance of place, for every Balinesian that we have met needs direct communion with the terra firma that this island is, knowing that spirits and ancestors are just under the stones in the yard of your birth.  And we learned this lesson, that a sense of place centers us, even when place cannot be perceived.  Bali has changed enormously in the last 15 years, and though we have returned twice to experience its beauty and culture, nothing will equal the excitement of our first trip there when so much went wrong, and ancestry and culture and center and place were introduced in a way that we had never before perceived.  This is why we go to places we have never been.  The vistas that were opened to us required an engagement with the world at a level that always asked for more until there wasn’t anything left to give, and yet we always returned.

I’d bet at this point, you are thinking that I am going to point out the vast parallels between travel and dis ease.  I could, I really could.  

The anticipation and acceptance of diagnosis and treatment, the need to roll with the setbacks and celebrate the affirmations, the challenges that require a stitch or two, the new experiences that teach in a way you’d never learn if you remained in the same place, the inner vistas that are opened up and the old knowledge that becomes strangely irrelevant in the new contexts; all of this parallels the dis ease journey.  Yet, the parallels are of less relevance to me than the vast differences.  ALS is an 18th century island penal colony at the end of the world.  Once you are on that ship, there is no going back, no stasis to center the journey’s cadences, no return to the home from which you set forth even if you are optimistic about the direction.  There is nothing in my experience that is like this dis ease experience,  for everything I learned from travel is so inadequate to this peculiar journey.  It is nothing that underwear in your carryon will handle, and the grottiness of its effects are never undone.

I hear the musings of my brothers and sisters in dis eased arms, and I can tell you that even those in so-called remission never quite feel clean.

One year ago, we were preparing for what I knew in my heart would be our farewell tour to favorite spots in the world, Thailand and Bali.  Now, Ev continues on, bringing home her experiences for both of us to savor.  A year ago, we prepared for new experiences that would solidify into mutual memory of taking on the world on its terms, holding hands and facing forward.  Now, I am thankful for the flow in and out of travel memories sweet and tough and frustrating and soulfully open to a constantly shifting reality; no stone foundations in this space.  Instead of plotting the next adventure, I have homecare coming in twice a day to help me dress, eat, keep the place picked up and sit close by in case I cannot get up from the shower.  My plans cannot push beyond ensuring the basics.  I miss Ev, and I miss travel, and out of that comes new learning that can only be framed by the dis ease of this moment.

Ev is traveling for the two of us.  She moves our adventure forward into new places, and so do I.  She must learn to keep on keeping on without me physically present, and for that I grieve.  But a death lived fully must continue to take on the tourist challenges of taxies in Rome and the Alitalia way of doing lost luggage.  And I continue with her.  

I am there, honest–I am there.

 

New Year’s Resolution

It is New Year’s Day, and I am reflecting on a beautiful vacation day spent with Ev. We didn’t really do any thing special except run some errands, look at bathroom tile for the condo, and pick up coffee and fish at our favorite St. Paul locales for both. We ate Thai leftovers for dinner from our favorite Thai restaurant (now with a second location just blocks from us). We finished the day off watching Benjamin Button, a slow and undulating film that we had not seen since we watched it in New Orleans the year of its release. Like I said, the day was nothing special, except that today represents what I would take more than anything else. It seemed so normal–hard to attain, and almost impossible to maintain–and when we get such normalcy for whatever reason, life seems just right.

Just right is a social construct, and this year it is my new year’s resolution to remain just right as much as possible. This will require great energy. This year, I know that while I handle new physical impairments, I will need to pay more attention to the social meanings of disability so that just about everyone I know, especially me, will have to figure out what is impairment and what is disabling. Thus far, I have managed to manage. I have taken the physical and emotional challenges thrown my way and with the support and encouragement of a lot of knowledgeable people, found ways around them. For example, I now drive a ROLLX van with a retractable ramp. Why? So that I can get my power wheelchair into the van to take me places. Why? ALS has caused my leg muscles to atrophy so much that I cannot walk. A power wheelchair and a van are two of the tools I use to continue to be a part of a greater community.

As I reread the above paragraph, I am struck by how matter of fact it sounds. I write stuff like this now as if I have always had ALS, and that it is the most normal thing in the world. And if I could approach it as only a medical issue, to be managed with a medical response, I suppose this would be all right. But it isn’t possible to live with disability without experiencing its broader social implications, and this is where a day that is just right, is just not that easy. There is more to dis ease than a medical condition. There is the social experience.

Bradley Areheart, in a 2008 legal brief about the Americans With Disabilities Act (ADA), contrasts the meaning of disability defined by the traditional medical model with the social meaning of disability. He states,

“… being “disabled” depends upon deviation from society’s construction of corporeal normality. Moreover, the experience of being a disabled person consists largely of encounters with the many barriers erected by society-physical, institutional, and attitudinal-that inhibit full participation in mainstream life. One upshot of the social model is that the experience of disability is not inherent or inevitable given a particular medical condition; rather, it depends upon the particular social context in which one lives and functions.”

In other words, physical impairment is only one part of the disability experience. There are social attitudes that can be just as disabling as the actual impairment. What I have come to learn is that the fullest extent of my own disability is only realized by the social assumptions of what it means to be disabled. I have sought to deal with this phenomenon by being somewhat transparent about my dis ease journey, letting you in on the processes I’ve used to negotiate my medical impairments. In that process, I have also shared my initial forays into the social world of disability. My negotiation of this world has led me to understand the difference between impairment—the medical condition, and disability—the social condition inspired by those impairments.

We all know that there are social implications to disability. For example, if we were to plan a building in the year 2012, and we were to say that the only toilets available would be urinals, I just cannot believe that questions would not be raised. Or if we were to say that all door handles and openers would only be reachable by people who can reach six foot six inches, we would say that doesn’t seem right. In both cases, we have met the requirement that there be doors and restrooms, but we have little trouble using the same logic for people with disability. If there is not an automatic opener on a door so a person using a wheelchair can easily use it, we can still say the bathroom is handicapped accessible. If we approach job responsibilities so that there is only one, able bodied way to do them, then we can say that a person with disability cannot work.

And mainstream media furthers the social construct of disability. In the book, No Pity by Joseph Shapiro (where I first learned about the TAB moniker by the way), it is pointed out that portrayals of disability in the media are usually one of two types—the horribly pitiable, crippled person who could not possibly want to live in such an awful condition, or the Super Cripple who can do anything despite the disability. I have written about the horribly pitiable in my response to Dudley Clendinen’s New York Times article about why he wants to kill himself. The idea that anyone with a severe disability would want to live with it can be difficult for an unaware TAB community to comprehend. On the other hand, look at the portrayal of the Super Crip? You know, the guy who can only wiggle his thumbs but still manages to strap on a pair of skis, drop out of a helicopter and outrun an avalanche off the top of a mountain. Oh there are other portrayals as well. On the website disabilitymovies.com, the following list of movie clichés is offered:

• The disabled person dies immediately after imparting a life lesson, inspiring the able-bodied to live their lives to the fullest.
• The disabled person offs themselves so they won’t be a burden to others.
• Blind people have superhuman hearing and can use echolocation.
• The disabled person was really faking it all along!
• Disability, especially disfigurement, is used to indicate that a character is the villain.
• The disabled person needs able-bodied people to teach them that their life isn’t over.
• People with disabilities can cure themselves through sheer force of will. If you’re still disabled after the movie ends, it means you’re not trying hard enough.

I know that offering up these observations may seem a little cynical or even raw and whiny. I speak all of this with love. This past week, I have watched my darling wife confront two different able-bodied people parked in the van accessible spot on a day we sought normalcy, because they don’t see the need for such a space, except as a convenience—short term parking–for them. These are the only spaces in which I can get my wheelchair in and out of the van, and I am sure that they aren’t thinking to themselves, “I am going to park here so I can deny a person who actually needs this spot access to this store.” It is just a blessed lack of awareness.

The greatest gift I can think of in the course of this coming year is to live a “just right” life. I am not a super crip, even though I have gone skydiving. And as I contemplate the course of my dis ease, any despair that I feel about it strikes me as normal and probably more appropriate for counseling or time spent with friends, than assisted suicide. I want to be a good husband, a good father and father-in-law, a good employee, and a good citizen for my community. I want to be a person that invites others to better spaces in their own lives. I want to be a good friend.

And in the end, my new year’s resolution, to be just right, is a social construct of good intentions and social deconstruction. Normal is different after a year of dis ease as the norm, but just right is nothing more than a good day in the life. Happy Just Right New Year everyone!

1. Areheart, B.A. (2008). When disability isnt’ “just right”: The entrenchment of the medical model of disability and the Goldilocks dilemma. Indiana Law Journal, Winter, 2008, pp. 181 – 231.

Time Stands Still

I have been doing a lot of thinking about time recently. I’m sure that part of the reason is that time takes on new meanings when you are told that the average time that someone with your dis ease has, is three years. And of course, the fact that Ev and I celebrated our first year of dis ease together (we went out to eat and had a lovely time, thank you) was also a time focal point. So it is no wonder that time has been on my mind. I think it is the confluence of information, anniversaries and just the weird kinds of dreams and thoughts that are a part of my new normal day-to-day that makes time a very different phenomenon than before I knew I had ALS. I realize that this may seem esoteric, overly analytic, or even too mystical, but time has become a central part of my being, and so it was bound to show up in these journeys of self-discovery.

I have lived with dis ease for some time now. For me, time feels like big, looping concentric circles that disrupt each other, kind of like gravel and stones thrown into calm water. Each set of waves is like so many consequences of the act, and these consequences get all mixed up in each other. Some of the stones that get tossed are small, and their waves slip under the giant kersplooshes of the largest rocks that land in the pool. And of course, each day there are the waves caused by the huge stone of dis ease, cast into my personal waters. Creative, disruptive, chaotic and yet strangely ordered, I blink and feel the stone of a year ago, as if it was today. I blink again, and I can see a year from now, the stone continuing to emanate its waves and splashes on my daily routines and my nightly dreams. These sights merge into each other with dis ease as the common denominator so that time is not day-to-day anymore, and the gift of dis ease is the realization that it never was.

I have come to realize just how very human the construct of time is. We often talk about giving the gift of time; we say we’ll get it next time; we are afraid we will not have enough time; we let time get away from us; we speak of not giving someone the time of day as if it was the least thing we could give; we time our performance, our speed, our technique; we measure our existence by years, months, days, minutes, seconds—all arbitrary parcels of time; we speak of slowing down and speeding up time; and when some significant event happens, for example, a dis eased moment that changes our lives from that time forward, time takes on whole new meanings as we question the time we have spent, and ponder the time we have left.

If we are paying attention, when our lives are significantly impacted, we intuitively know that the big events—the weddings and funerals, the deaths and births, the new job and the job lost, the collective shock at some natural or human made horror, or the quiet realization of love that transcends all experience of love before—will ripple throughout conscious and unconscious existence in a way that will change our perceptions, our interpretations of what it means to be alive from that point onward. Flowing out into our lives, the big events create new peaks and valleys for us to scale. They inspire us to seek new ways, and they frighten us that the old ways no longer carry the same meaning. And we pay attention to these life events, remembering them as if they were yesterday, conjuring their imagery with the slight closing of our eyes and reaching into the depths of our souls for the keys that unlock their vision. We know our own roles in these events intimately—we can replay our part in each memory as if we are standing there. It is a way to make time stand still.

Ask any Pearl Harbor survivor (after seventy years, there are so few left), and they can still bring the collective energy of that moment forward to the present, and at the same time, exist in the moment as the teenagers and twenty-somethings they were in 1941. This is time standing still. It is time’s waves splashing on the collective experience of an entire world. Or speak with the parent who hears that their child has dis ease for which there is no cure. That moment changes them forever, altering their interpretations of past experiences with their child while determining their future steps as they seek a way, any way to change the trajectory on which they have been placed. The moment of diagnosis stands still forever.

When Ev and I were much younger, between the births of our two sons, she miscarried. On one level, miscarriage is a common medical event that carries its own pains and symptoms and subsequent treatments. On another level, I remember both of us lying awake the night after, holding each other and crying softly, grieving the hopes and dreams that pregnancy held for us, dashed in the physical realities that this one was not to be. And then we moved on.

But we didn’t. I don’t know exactly, but that event made me look at my first-born son differently. Instead of interpreting pregnancy as something that happens easily, he became the miracle that he is. Instead of the loss of his birth day in the backwaters of my memory, his birth dropped, like a stone into the currents and pools of my present all over again. And when our second son was born, I was prepared to attend to the event like it had already happened. The dis ease of miscarriage made the space of time a concurrent set of ripples and waves with consequences great and small. I still carry that night, that realization with me, and it comforts and jars me at times when I am least expecting it. Time stands still.

If time really moves only in a sequential way, then we are born, we live and we die. But if time is, as my new normal allows, concentric, circling in and out on itself, then we ourselves are the disruption to the placid waters of existence. I find comfort in this odd realization. I realize that the small events that I experience now are influenced by the ripples of my past, and that they will continue to play out in the future events of my life, as if the future was a present space.

It makes everything mean something new. It means that we cannot take back, but we can give forward. It means that our actions really do have consequences; that we reap what we sow even though at the time, it may not seem so. But above all, it means remaining conscious to the fact that by existing in this river of time, just by existing, we alter the flow ever so slightly. As time’s waters surge around us, everything that results in this moment is clarified through attention or obfuscated through lack of awareness. Everything from this moment on is disrupted and given the meaning that we assign it.

It is December, Advent in the Christian calendar. My advent in dis ease will always be associated with this season. I close my eyes and hear the beautiful music of this holy time. I feel the breath of a choir singing the most magical “O Magnum Mysterium” in candlelight, and my life is altered by the magic. I can hear the floating mystery of voices singing “Gloria in excelsis deo!” and my hearing is altered to perceive the sounds above the sounds, the music above the music. The music is timely, and it is timeless. The music is how time works, and it has become the vision that dis ease gives me, as long as I pay attention. It was written before I was born, and it will remain after I die. I try to live now with the knowledge that the big rock of dis ease tossed into my still waters, emanates both out and in, and the space it created before the water rushed back to fill it, is always with me. But it is only one splash in a life, not my life entirely. Just like a marriage does not a couple make, dis ease does not a life define. And there is the beauty of time standing still.

We all get to choose what we do with our time.