Perhaps you have noticed that I haven’t blogged for nearly 4 weeks. There are reasons for this. My physical ability to write is more and more compromised by my lack of strength to pull up to the computer and my lack of stamina to stick with the writing once I am there. Of more significance is the fact that I have chosen not to put up two separate blog entries. It isn’t that I am afraid to share how I am feeling, especially when my feelings have to do with grief and loss. It isn’t that I am in such a bad space, that I’m afraid no one will like me anymore. It has more to do with the constant existential awakening that comes with dis ease, with this seemingly infinite process of winding down, yet moving at the speed of ALS. In the past two weeks, I have allowed myself for what seems like the very first time, the question, “Is this the beginning of the endgame?” What a question to ask, as if the moment of birth is not the beginning. But we aren’t conscious at the moment of birth like we are in the bloom of our adulthood, so the question takes on meaning even if it borders on the rhetorical.

My French muse Francis Cabrel sings the angst, “J’avais des rêves pourtant.”

Raising the question of the endgame is significant for me. Before, it felt like an academic exercise, one that fulfilled my need to stay ahead of symptoms and losses in a way that gave me the illusion of control. But as I look back on my control rituals, it is clear that they lead to this point: The endgame is coming, I don’t know when, but I can have faith in its presence now in my life, a new phenomenon for which to prepare. And in preparation it is useful to stop, to take stock, to recite the poetry of grocery lists and ledger sheets that account for gains and losses, mumbled psalms of what is in my capacity and what is not, utilitarian self-pity, borderline whingeing, yet keeping ahead as best I can, even though I know I am seriously falling behind.

The loss is easier to share than the litany.

I cannot help but feel robbed, not of immortality, but of the 30 years of healthy old age that I honestly thought was my future. ALS provides the perfect corrective to the best of plans. She grants knowledge that our imperfect physical envelopes in which we place so much importance, given to us for such a short time, always fulfill their design destiny and break down utterly and completely. There are so many ways to shorten our lives, and when you consider how many ways you could go, how easy it is to experience catastrophe, how unremarkable is death, then dying before one’s so-called time should probably be seen as more the norm than the exception. The 30 or so years that I like to believe would have been mine were it not for ALS are so minuscule in the scheme of the universe, that it is tempting to diminish their importance, to believe they are meaningless.

But they are my 30 years, and I had dreams and plans.

I planned to sleep in the arms of my one true love, to be awake, so very awake to her presence in my life. I planned to be there for my boys and their true loves and the children that they would have. I planned to cook birthdays and anniversaries, Thanksgiving and Christmas, three-day weekends and one night chili cookoff’s, holidays and holy days. I planned to be the husband and father and grandfather of legend. I planned to bring a rational voice and compassionate love to the education of children, the emotional healing of people, the design of systems. I planned to be the best friend anyone could ever have. Before ALS, I could see those plans opening into limitless vistas.

I am cured of planning, at least for the moment. Now, I pay attention to the losing – hand dexterity, back strength, neck strength, vocal presence – all of these to go along with the legs and arms and torso already gone. And with the losses, I have struggled to play catch-up and turn to new ways and old ways that I now realize are just barely ahead as the losses pile up behind. And yet, I am not cured. I still have plans – final words, time spent, memories, music.

I plan to end in a better space, always a better space.

If there is anything that I have learned from ALS, it is that the bad times are like changeable weather. If you have patience, things will begin to turn around. There is no big event, no one thing that turns me away from feeling sorry for myself toward that person I want to be. In spite of my whingeing, I work hard for spaces devoid of soul-killing feelings – deep resentment, crushing bitterness, prolonged anger. It isn’t that I don’t own major reserves of these feelings, but grim feelings have no payoff, they depress colors, muffle sounds, numb the touch and leave me hopeless in dis ease. So I do my best to acknowledge them, communicate them, concentrating on things that bring me back into the here and now space where the beauty of living is so much clearer, even if it feels shortened by circumstance.

Listen! Grimness is legitimate. Despair is normal. Helplessly hoping is most human. But I can handle it, we can handle it, it only overwhelms my body. My soul still sings. My spirit breathes.

So many people offer time and companionship, keeping me from loneliness, caring for such small yet important items as straightening my fingers and helping me adjust in my chair, providing thoughtful company, bringing bread. The times I can get out to church, to yoga, even to a wheelchair tuneup are a blessing, for the people whom I love touch me with their strength, and I feel better in spite of how fatiguing the logistics can be. The unconditional love of Ev and sons and daughters–in–love, of friends and colleagues, strengthens me for the eventual time to come when I know that ALS will overwhelm me, and the decisions we make together will be like pouring joy’s waters through the clarifying filters of sadness.

And of course, there is Hypatia – pure granddaughter.

In a funny way, the endgame opens a panoramic view. Quiet and starlit, soft and peaceful, waves and wonder, I just need to breathe into it, to open myself to its beauty, to not worry about the plans or the timing. I understand now that the plans I made were not so much about me but about everyone else whom I love. The love will find its own way if I will allow it the space. And I will be able to move through this no matter how hard it gets, if I will just stay open to the epiphanies and revelations on the horizon and right before me. “J’avais des rêves pourtant.”

And the endgame is just one end, opening new beginnings.


Going the Distance

In W.P. Kinsella’s Shoeless Joe, a book better known for its movie spinoff Field of Dreams, the line “Go the distance,” takes on both symbolic and literal connotations. The book’s protagonist Ray is called to accomplish a holy trinity of tasks—build a baseball field, fetch a literary recluse, and bring the echo of a country doctor long dead but still needing release from this world into the holy act of baseball. Ray defies all common sense to accomplish the tasks. “Going the distance” outlines liturgies of connection, sundered and besmirched by profane deeds, misspoken longings and unfulfilled destinies; all to be reestablished to quiet the fitful rumblings of the universe sleeping uneasily beneath the cornfields of eastern Iowa. “Going the distance” is the ultimate outreach, and the result is the unification of Ray’s own fractured psyche. I know, it sounds like a reach, but it is a delightful book, and “going the distance” has had a special meaning for me since the 1982 publication of this little gem of sentimentalism and religious haj.

This week, Ev and I symbolically and literally went the distance as we made the quarterly pilgrimage from Minneapolis to the Great Cathedral of Mayo, closing sacred gaps in our knowledge as to what comes next and next, and simultaneously revealing chasms in our understanding of how the ultimate destination creeps slowly and slowly a little closer. Mayo always lives up to what John Dewey would call an experience. Symphonic in scope, driven in tempo, Mayo dances the distance between the unaccomplished and the fully realized with the efficiency of a last New Year’s Eve waltz. The ALS Clinic is its own particular composition, a Bartok Concerto for Orchestra—an elaborate work accomplished with virtuoso solos from each section of the ensemble with riffs on dis eased melodies by the neurologist, speech pathologist, dietician, physiatrist, social worker, ALS nurse, and (sometimes) occupational therapists from the ALS Association. All of this takes place in the space of 4 hours, though it seems like a thousand mile sprint.

Dis ease and the high liturgies of medical science cannot help but shift the meaning of going the distance, particularly when cures are unknown and management of symptoms both current and foreseen is the ritual communion at the high altar of treatment. I am fully aware that at times, I seem to project understanding of these religious moments, but as some of the things that might be indicative of my future have yet to appear, and others have become so sharply focused that my sightlines seem like the viewfinder of an electron microscope at full power, I can tell you that my distance is neither fully perceived nor understood. I am still playfully accused of showing off on the breathing tests, indicating adequate air force and blood oxygen, but the consciously unconscious perceptions nagging me about arm and hand weakness are also true—it doesn’t take a lot to break me in the wing position and pinch tests are only half the force of six months ago. While I still own the ability to recover, I have had to adjust to the fact that recovery requires more time than before—naps slowly edge up in duration and quickly dive into depths of sleep usually reserved for nighttime slumber. My weight is steady, and my thinking still seems relatively coherent. My legs require full assistance. And with these assessments, the clinic ends with the added benefit of us PALS getting together for sandwiches and the smallest of small talk, in spite of the best efforts of our social workers to probe for potential emotional trauma.

By the time Ev and I get on the road around 1:30 in the afternoon, I can hardly keep my eyes open. Poor Ev does the driving, and I must learn to be more insistent in the future about pulling off the road to rest if one is sleepy.

I am used to traversing great distances by road, but driving is no longer a question with which I will wrestle. Practically, I cannot justify a huge commitment of resources that will surely be needed in the future just so I can indulge the fiction that driving is an indefinite given. After 40 years as the charioteer guiding us through European mountain passes barely wide enough for a 1976 Toyota Corolla, or the chauffeur dueling the car by car and lane by lane insanity of Cairo traffic, or the driver reoriented to left side traffic flow in Cypress, Thailand, and Indonesia; after 40 years of being the guy that got us from here to there in whatever vehicle was made available at the time, my driving will come to an end, and I will stop within a matter of weeks. The concentric circles that define my physical boundaries continue to collapse so that my distance from the dance of physical loss lessens as human distances loom large. Going the distance will continue to circle more and more inward, and for now, it is well enough, though probably a portent of things to come.

Going the distance between doctors and patients is a journey bounded by professional guidelines, but clinic format pushes these boundaries as the caregivers get to know us and we them. Frankly I cannot imagine doing an ALS Clinic every week—these vaunted medical soloists tapping out variations on a theme of “managed loss” while the dis ease conductor beats heavily into the final cadence. It is emotionally exhausting for Ev and me, and I cannot help but think that it has to be the same for the clinic team. Respectful distance might be the only chance they have to stay even, but this distance is hard to maintain in the intimacy of ALS. Partly, this is because we love these people, and of course we hold them in the utmost esteem. They are kind and warm and authentic in their care. You’d love to have dinner with them, talking like food friends do—“How’s the college?” “Oh, fine, and how’s the clinic?” “Oh, you know—same old same old, still no cures, and I don’t get my hopes up.” Then we could lose the “how’s work” catch-up by shuffling through the Twins or the latest concert or politics. These are great people with enormous human depth, and I am always happy to see them. At the same time, the anticipation and the high stakes dialogue can feel like a cross between trauma and conversation while dancing. And we are easy—no vents or pegs or anything like that yet–just arms and legs and torso. But I have to admit that the distance is a challenge, because while it is the professional thing to do, we still speak some of the most intimate thoughts, and that makes the distance confusing at times.

Now, on the tail end of the weekend that wasn’t, looking forward to a week doubled by four evenings out, Ev just put in the distance with her first 30 miler of the season. She is going to ride the MS 150 with Jon and Kirsten and Katy and (I guess) me in spirit. They are doing a Bike ALS Trek next weekend as their 50-mile warmup, and they are going a distance that for me is no longer even a whisper of a quasi-religious voice. Although defined by mileage, fundraising takes center stage so the distance is less important than the seat time on the bike. But going the distance requires me to learn to honor their in-body commitments through my out of body experiences as they increase. The temptation is to just get through it, but that would require a distancing from the delicious humanness of it all; getting through would dehumanize what was and what is to be with distance forgone instead of anticipated. It is tempting to skip some of the distances. But I will breathe in this week, and I will breathe in their rides knowing that if I can hold my thoughts just so, the driving, the weakening, the personal distances both seen and unknown will pass with joy, even if it takes a longer nap, a medical ritual, or a smile and a hug on a sunny rainy day.

The penultimate voiced motivation in Shoeless Joe is to “ease his pain.” The pain to come is ultimately nothing more than distance not traversed. Healing takes place in going the distance, and that is what I plan to do, even if I have to stay still to do it.