All Good Gifts

It is that time of holiday truce between Thanksgiving and Hanukkah and the season of Advent, and I am reflecting on the many gifts I have received since my rebirth in ALS. In my three years since diagnosis, it has been so rare to feel like there was something I could do about my physical regression. I have gotten used to the idea that, as one of its gifts, ALS takes and all I can do is anticipate the loss. This is been borne out by experience, for example my mobility has regressed from walking with the support of a cane to a walker to using a scooter and now spending most of my time in a power wheelchair. The decline of my physical capabilities has been inexorable, and the challenges have become, especially in the past three months, exponentially iterative – one multiplied on top of another on top of another. It should be no surprise that I had come to the point where I despaired that anything I might do in anticipation would be totally palliative in nature, holding off the inevitable and trying to maintain where I was for a few more days or weeks. I had come to despair that nothing would result in my feeling better, that each day would be a little closer toward death, that the best I would ever feel would be right now, because the nature of ALS is to feel worse and worse and worse. Thankfully, in the past month that situation has changed.

In June, I was tested for diaphragmatic strength and phrenic nerve function to see if I might be a candidate for a diaphragmatic pacing system or DPS. Much like a heart pacemaker, only with the power source outside of the body, the diaphragmatic pacing system stimulates the diaphragm causing it to contract and not so gently forces the person to haul in a large breath of air. The DPS was first approved for persons with spinal cord injuries as a way of weaning them off of a ventilator. Aside from the initial surgery to place the electrodes in the diaphragm, the DPS is far less invasive and requires much less maintenance than a ventilator to keep it going. Over a year ago, the Food and Drug Administration approved the DPS on a compassionate care basis for the treatment of ALS. I have been watching with great interest other brothers and sisters in ALS who have had the DPS installed, and I have been doing a great deal of research on the pluses and minuses of the system.

Having passed the June test, it came down to waiting for my breathing to deteriorate into the treatment window that Mayo uses for its protocol, and to file with my insurance to see if they would support the procedure. Those two events came together in mid – October, and I had to decide quickly whether I would do the procedure or not. One reason you might not go through with the procedure is that the surgical team is not sure whether the DPS can be implanted until they have you open and they can stimulate the diaphragm directly. If it contracts, all systems are go; but if it does not, then they close the incision and send you home. I have had enough disappointment already, so even as I scheduled the procedure at Mayo, I steeled myself for the distinct possibility that my diaphragm would be too far gone for the procedure. But it was a rousing success. On November 14, I had surgery to install the diaphragmatic pacing system, and on November 15, I began the process of calibrating its stimulation to the wide smiles of the medical staff.

And here is the first gift.

I feel better. I am breathing more deeply, tolerating the electrical shock to my diaphragm very well, getting used to speaking around the delivery of the shock, and ironically, in spite of fatigue from the surgery, I have more energy. Unlike every single palliative intervention that we have made in the past three years, the DPS has actually helped me experience improvement. I am even sleeping more soundly, though not with the device, and my voice feels stronger than it has in a number of months. What a joy to experience any physical improvement.

Gospel! And there is more.

I have managed to solve some communication problems that I was having before the surgery. With the loss of hand and arm strength, I had lost the ability to use an iPad, to manipulate both the speech to text software I was using, and the smart house technology that I relied upon for basic functions such as turning on and off lights or music or other devices. In the past month I had despaired that I would be totally reliant on another person in order to accomplish such basic tasks. And to be truthful, I am so reliant on those who are with me for such simple things as straightening my fingers, placing my hand on the joystick of my wheelchair, or doing a bit of range of motion just to relieve the physical effects of ALS. But in communication, with a stronger voice and new technology workarounds, I am beginning to find a bit more of that independence that I value so greatly. Using an actual laptop computer instead of an iPad has allowed me to interact totally by voice, and while I am not back to 100% of what I was, the 85 to 90% is highly acceptable. So, even though this is more of a symptom handler, in conjunction with the DPS, I feel like I have voice control over my life again.

But, dis ease insists that the shoe must drop.

Over the past three years, I have worked hard not to be hopeful in my progression. I know that sounds strange, but I have learned that in such hope, particularly with ALS, lies crushing disappointment. I have sought to be realistic and honest and truthful with myself about my prognosis, my life as it continues, my life as it ends. With the installation of the DPS, I find myself having to reconcile this little uptick in how I feel with what ALS hammers home day after day after day. I mustn’t hope for more than is possible. What is possible is that I will feel better for a while, that I will find my voice again for a while, and that my physical body will continue to deteriorate. Reconciling the juxtaposition of deterioration with the tiny flame of hope that the DPS kindles has become a new life task for me. I am by nature a hopeful person, and I have managed to channel my hope into the lives of those for whom I care and that I love. My hope is for humanity, and that through relating my experiences it is helpful to find deeper humanness. And I have learned not to hope for myself except to accomplish this life as best I can within the framework of the circumstances in which I must exist.

My new reality is really just my old reality – I will fulfill body and spirit as designed.

In essence, I am granted the gift of spiritual rationalism. It is in the nature of the human body to wind down until death. It is in the nature of the human being to hold death off for as long as possible. These are facts. One can leave you depressed and morose, the other unrealistic and silly. So I now seek to continue my process of reconciliation, feeling better yet getting worse. I know that none of this is a cure for ALS. Just as Leonard Cohen points out that there is no cure for love, ALS points out that there is no cure for life. But, to have a procedure that results in feeling better almost immediately, coupled with finding a way to bring voice control back over my environment, I have a more positive outlook than I have had in months. I know that ALS continues, but I feel more the possibility of this spiritual and physical and emotional goal I articulated to myself three years ago – to live fully until I die.

And this is no holiday truce – each of us is granted the gift of living in hopeless possibility.


Despite and Still

Let me begin by putting the facts up front. Life does not get easier. The challenges of youth and young adulthood are only the beginning in comparison to the challenges of aging. And ALS is life’s challenge exponentially expanded. Where the normal life gives us the illusion of plateaus in its march from death to birth to death again, where the aging process is less noticeable until it takes place, where the normal progression gives the illusion of control, ALS grinds all illusion under it’s heel into the gritty ash that our bodies become. It speeds the process so no respite is available, at least it doesn’t seem so. It just gets harder and harder, and there is barely time to catch your breath.

Writing mirrors these facts. I write in my head on Friday night, perhaps a sentence or two on the screen, tired and grieving and vulnerable words worn down by the week that was. Saturday I speak truths of frustration and sadness and guilt and anger with a little humor and happiness thrown in for good measure into a microphone that still needs guidance about what is truth, what is poetry and what is pure conjecture. And if all goes well, Sunday hints at just enough grace to plunge once more into the breach, at just enough strength to handle the living that is harder and harder to undertake. And each month of the last 22 months, each week since I was born again into dis ease, I need Friday night to start earlier and earlier just to find the strength for the next round to come.

I know there is nothing profound in the facts. Dis ease mocks profundity.

I have been working on a project for our alumni magazine about living (and dying) with ALS. We are down to the final details, making sure the facts square up with the story. It requires negotiation and attention, and not surprisingly a little bit of compassion. Negotiations and extra attention are to be expected, but the details themselves are quite instructive, for in those details are the consistent and layered lessons loss teaches. I say consistent, because my experience since ALS’s arrival is little changed. It is almost impossible to deny my primal reactions to the day-to-day normalcy of dis ease’s cost. But the multiple strata of these reactions, the layers, are what make this so complicated. This week, that point was brought home to me over and over again. Dis ease exacerbates the primal scream, and humanness seeks to layer multiple veneers over the reality. But ALS creates the conditions where living is significant meaning much more than I ever thought possible.

I know I shouldn’t be surprised by these lessons in humanness, for their consistency to horrify and delight is always present. At the beginning of my ALS life, I thought, even as I lost more and more physical function, if I remained open and transparent about its progression, there would be a broad comfort level exhibited by all of those who found themselves within my dis ease sphere. In many ways, that has been the case. Friends and loved ones stick with it, stay with me, work with me. And the task is hard, plugging eleven leaks with ten fingers hard. It is hard not to allow concern to leak from the back of your eyes. It is hard not to allow fear to leak from the pit of your stomach. It is hard not to allow grief to leak into your voice. And it is hard for me to remember that concern, fear and grief are not personal, even though on one level it is all absolutely personal.

And personally, I believed my own primal reactions to ALS could be mitigated by my stark honesty about it. Similar to my friends and loves, I thought that openness would make me more comfortable with the physical loss. And like my hopes for my peeps, my hopes for myself have been somewhat realized. But it has been hard for me too. The fact is that my knowledge of how hard it is to hold concern and grief and fear at bay is also prone to leakage, from my eyes, my gut, my voice. And this is absolutely personal.

If I am honest, transparent, liquid in my acknowledgement, openness has not held the bad stuff at bay, but it has allowed me to look it in the face. Even when I strive to deny its presence, ALS is listening, breathing, sucking life, cravenly mocking the grace, the peace of the moment, with the comparisons to the man I was. Even when I lose myself in some beauty, some musical wash, some worthy challenge, the blessing of God, the spiral inward, breath and velvet, consciousness of the unconscious – ALS is just out of sight, of hearing, of feeling, but not out of the way. There is no respite; just slow slippage down the dusty gravelled sluices and wadis of my own personal desert with a hint at the waters to come, though all is sand and dust and uneven footing. There is no getting away from it. It is always with me. I own what is mine, and I own what I project onto others. And I know dis ease’s direction.

Our local ALS Association has a respite program for caregivers, up to 18 hours per month where a caregiver is encouraged to take time for himself, herself, to exercise, pray, read, walk, get away, but not too far. Such a gift born of need for time and space—who would not require such a thing? A gift not for recovery, but for respite—just a little rest to find the strength to come back, to return to the space where the presence of ALS overshadows all things. Greater love has no person than this.

Sometimes, I would give anything for an hour free of ALS shadowing my room, my loves, my friends, the air, the stars.

The facts, dressed in their Joe Friday monotone, are still the facts. Each day, we are given choices. The choices accumulate, their effects bringing focus, the focus sharply delighting, frightening. Denying the facts, the accumulation, the choices, the focus is tempting, but counter productive to the needs of recovery. It is a work in progress that requires progression in the work. The stare ahead, raw stark feeling of Friday gives way to the voice of Saturday to the point on Sunday where it can be revealed and worked and embraced. And Monday can come again to slip into an earlier and earlier Friday, until Friday is no more, and nothing remains but Friday’s ether. The facts are lovingly aligned. To paraphrase Robert Graves, facts are gentle, and I am rashly honest. Yet we continue and love and live, “despite and still.” To choose otherwise would be loss greater than any dis ease we might imagine.

And I can dream of when ALS no longer crowds my space, despite and still, though there is only one path to the fact.

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.

The Apology

I have been thinking about apologies this week, mostly because I have been feeling a little sorry for myself. Due to the speed of ALS, the physical losses seem to tumble one on the next, so that just when I feel like I am good with the space I currently occupy, a new chasm opens up and down the rabbit hole I go again. And of course, each of these new physical losses is accompanied by regret at the very least, perhaps sorrow or even grieving of sorts. Some of it is hard hitting where I find myself saying somewhat incredulously to my body, “Really, this is where you are heading, really?” Some of it is pretty Minnesotan, “OK, whatever.” All of it lands you on the regret-to-sorrow-to-grief continuum. When you have dis ease, the place you land defines “I’m sorry,” and I have to admit, ALS can really make me grieve.

I accept that dis ease inspires regrets, so it isn’t difficult at all to recognize twinges of conscience over some past action, a past slight, a stupid thing that I know I did. When you are my age, with my past, you could spend 25 hours a day regretting things you have done. I have had to learn not to ride the regret train too often, or life could be one great disingenuous Steve Martin line, “Well excuuuuse me.” From where I sit now, I know how impossible it is for us to grow as human beings without hurting another in some way. As we careen through childhood and adolescence and adulthood, emotional flotsam and jetsam is inevitably left in our wake. But I have also hoped that as these experiences have accrued, I would become more sensitive, more caring, more aware of the difference between hard conversations that proffer change’s new paths albeit discomfiting, and hurtful discussions that leave no room for betterment or growth. And that is what I use as the bellwether for whether I should feel regret.

There are times when an apology is appropriate, especially when the social fabric has been torn either purposely in the name of some supposed greater good, or accidentally due to the insensitivities of the moment. Apologies, if done right, will offer the mending and repair work that is absolutely necessary to move on together. Learning to apologize is complex as our earliest notions about apology come through our parents, and their motives and techniques color our perceptions of the concept, passed on to our own children and grandchildren through our own acts around apology. Some parents see an apology as a way of mending the inevitable damage to familial structures, and they expect the apology to suffice in that endeavor. I think that from such an interpretation, children learn a healthy regret, enough to want to empathize, but not so much as to debilitate them. However, I’ve been a teacher for long enough to know that many parents (and teachers) see an apology as a punitive line in the sand, and this interpretation overlays guilt and shame and resentment on the act of apologizing. That can result in manipulation and inauthenticity if such an interpretation stands unchallenged. If nothing else, the teaching of apology is fraught with danger for how we frame these moments—either authentic or manipulative—frames the act.

How apologies are perceived can also be quite complex. “I’m sorry,” invites all kinds of scrutiny—everything from “Where did that come from;” to “Oh, you don’t need to apologize;” to “You’re damn right you better apologize;” to “Thank you, and I forgive you.” The psychosocial implications go way beyond the apology. Apologies can be manipulated to indicate weakness as in the conservative backlash that took place in Japan when the Emperor first apologized for Japanese atrocities inflicted on the people of Korea, or the inevitable talk-radio response that took place when former President Reagan apologized to the Nisei for their interment during WWII. Of course, apology can be interpreted as a sign of strength too, so that admitting culpability and offering to move on together, changed by the realizations that led to the apology, is indicative of maturity and comfort in one’s own skin. What is clear to me is that apologizing is really only the front end of whether we shall grow and learn from our regret, and that moments of apology can foster great wisdom over time. Of course, they can also result in great denial, self-delusion, and self-serving rationalization. I guess it really does depend on what each of us brings to the apology.

I have to admit that in this time of Facebook, I have been tempted to go back and revisit different times in my life, remaking acquaintances with whom I felt I might really owe an apology but was either too arrogant, or blind or stupid to see it at the time. Mostly, I have resisted such impulses, preferring to think we all have moved on from such dis eased moments. I am puzzled by these urges—that is, why my moments of dis ease have also been accompanied with a strong desire to apologize. And up to this week, my conclusion was that the accompanying anxiety of dis ease inspired strong needs for some stasis in other arenas of my life, hence the need to apologize. On reflection, that seems to me to be pretty self-centered.

All of this leads up to an incredible event this past week. A friend from my childhood reached out to me and apologized for a moment carried for over 40 years. I won’t go into the circumstances, as they would require more than their own blog entry. It was when we were 14, and neither of us had the life experience, nor the life wisdom to truly handle a situation that flummoxed the adults in our spheres, let alone a couple of adolescents. But I think what is more important is what that apology meant to my friend’s life, and probably what it means to mine. Our Facebook back and forth, started so bravely and so vulnerably by my friend and framed by 40 years of accrued living after the fact, was a revelation. And here it is: It is in the apologetic moment, as we seek relief from the regrets and sorrows we carry, that we consciously construct the human beings we wish to become.

This is delicate stuff, requiring incredible balance.

You need sufficient regret or sorrow or grief to disrupt your inertia and cause you to seek centeredness again. But that isn’t enough, and this is what my friend realized. It isn’t the apology. It is the ability to embrace the dis ease, allowing it to shape you into goodness and vulnerability. It is not enough to apologize from your dis ease. You must genuinely wish to bring centeredness to another. If all you want is to feel better yourself, then what you will get will be the diminishing returns of self-serving apology rather than the synergistic growth of seeking another’s betterment. My friend understood this, as the whole point of the outreach was not for my friend to feel better, but to acknowledge the concern that the moment had been hurtful to me, and that hurt carried through, even 40 years later.

See what I mean?

I now realize that sorrow has the potential to be a constant companion for the good. It urges us to be the persons we want to become, not some static, automated emotional grub who cannot recognize the beauty of the currently shared moment except with regret as a past event. This is not something that I could have voiced even last week, but my centeredness was disrupted by an apology, truly heartfelt and other-centered. And that sorrow ultimately helped me understand my own regret and sorrow and grief in ALS.

And for that, I’m not really sorry at all.

The Truth

In A Few Good Men, the climactic moment comes with great anticipation. Tom Cruise, playing Navy prosecutor Daniel Kaffee, demands of Colonel Nathan Jessup, played by Jack Nicholson that he divulge how the murder of a marine was deliberately ordered. Cruise yells, “I want the truth!” and Nicholson answers, “You can’t handle the truth!!” It is high drama, and it somehow reminds me of how we do conversations about dis ease. The truth is something that we all want; yet deep down we wonder whether we can handle it. How we want the truth and how we handle it is unique to each of us, and it can be confusing for lovers and friends, family and colleagues. For some, truth is a hardship, while for others it is a relief. For me, truth is an elixir, potent and tart, washing away the stale sickness of carefully maintained identity, resulting in clear self-awareness. The truth is hard and surprisingly simple, but the truth is also easy and complex. Above all in dis ease, the truth is specific, general, and impossible to predict in its course, yet inevitable in its progress.

When I first learned my diagnosis, I sought truth like a cure. I contacted the ALS Association, surfed the net (beware the YouTube videos), and looked up every medical report I could find. I joined patient forums, discovered that there are dueling associations seeking money for research, and realized quickly that truth was not in the facts. The facts of ALS were presented in a way that didn’t make sense to me. Some just didn’t add up—5000 new ALS cases per year, with a 50 % mortality rate by the third year after diagnosis, doesn’t really equal 30,000 US ALS cases at any one time. Others seemed too good to be true—a cure can be found, just send money. And then there were truths that were just plain raw—Persons with ALS (PALS) who were filmed in all their paralyzed glory, cared for by haggard, weary spouses, parents, children, friends. I trolled through these different sources like a fly-fisherman in an Idaho trout stream. And what I realized very quickly was that each source sought to portray a picture that served a purpose, and discerning the purpose was more important than understanding the actual facts that were portrayed. Each truth was a carefully constructed façade, more complex than simple, yet easily predictable if the purpose could only be gleaned.

No wonder it’s so hard to handle the truth.

What I have learned in my time with ALS is that there is TRUTH and there is truth. The capital T Truth is one that perpetuates narratives that serve another purpose. Here is an example: ALS results in the gradual loss of all motor neuron function until the person is totally paralyzed and literally trapped inside their body. There is truth in this statement. But there is also great helplessness. I can tell you that it is true that physical function slowly and inexorably goes away. I can tell you that there is a helpless feeling that goes with this, especially when you don’t feel like you are ahead of the curve. But I can also tell you that each time I discover a strategy, a technology, or an attitude that helps me handle the next loss and the next, I don’t feel helpless. I feel empowered. The small t truth of the matter is that ALS moves uniquely at its own pace in different ways in different people. I have met numerous PALS who are living well past the 3-5 years of life that the Capital T Truth diagnosis gave them, mostly because they have chosen certain ways to mitigate each new symptom. I have also met PALS who experience small t truth despair, mostly because they feel they are no longer connected with humanity in any meaningful way, or that they are a tremendous burden on their caregivers. The truth of the progression and its consequences is just not a simple Big T Truth.

On the other hand, the small t truth that I have learned from dis ease is exceedingly honest, yet quite malleable. It requires a day-to-day, sometimes even hour-to-hour gut-check to discern its presence. Somewhere in the facts of the day is the truth elixir. Here is a good example. I follow the careers of former students, and current leaders in the world of education. Their tribulations are many, and their triumphs have to be quietly celebrated—leaders mustn’t chortle out loud when things go their way. When I get the chance to have lunch or meet for coffee, when we run into each other in unlooked for places, when we just get the chance to catch up; their passion and their pain inspires me. I love the opportunity to listen to them, and I feel privileged to encourage them back to a center that is built around the children in their care. It isn’t easy to be a teacher, a principal, a superintendent, a professor. You can be 95% successful, yet the one person in your classroom that you have not reached will haunt you. As a principal, you can easily find yourself having to support policies and procedures that in another context might have made sense, but in the place you find yourself, do not work at all. It is dis ease of another kind, and I get to listen, and empathize, and encourage, and support. It is tiring, yet I am strengthened in my own dis ease negotiations by these encounters.

A dear friend commented on my last blog that honesty is a spiritual state. She wrote, “A spiritual friend is one who is honest with me, so honest that his words break through any denial or illusions and help me be in this precious moment.” Boy do I get that. When I feel the panic of my lack of leg strength, or the fear that I will have to quit driving, my naturally manufactured response is to create an illusion that everything is OK. But it isn’t OK. I have every reason to panic, and I have every reason to fear. But that truth means I’m not crazy, that I’m not making this up, and there is a quiet satisfaction in the power to recognize exactly what is going on—no schemes, no hidden purposes, no Truths with a capital T hiding facts that are cleverly portrayed to advance some specific agenda without revealing it. And as my friend says, it helps me be in the precious moment.

In all honesty, most of us have Jack Nicholson moments each and every day. It could be a white lie or an ornamentation, some Baroque rationalization for some thing we have thought or done. And we cannot handle it, so we construct capital T Truth that will allow us to remain in the game for another day. I get that. I need that. But I also know this. Meaningful living requires that truth, with all its complexity and contradiction, remain the center-point of a life well lived. I am thankful that I can discuss my truths with friends, colleagues, family. Many of you have said to me that you appreciate how open I am about my ALS. Believe me, what I gain by placing my truths of the hour into written form is both empowering and therapeutic. I am thankful you read, and I appreciate being able to express dis ease this way.

In the long run, all of us have to decide how much truth we can handle, how much truth we want. But there is a quiet center to realizing just how contextual truth is, and how bound our life happiness is in finding not so much the facts, but the truth that surrounds them. I do want the truth. But I also need to be lifted by the life that truth defines. And in this, is the honest and authentic response to the truth of dis ease.

At least if I can handle it.

The Lover

It is strange to me that as my dis ease progresses, or more accurately—my body regresses, my love for life is more focused. As you know, last week I melted down in the great, bubbling cauldron of ALS. I needed to come clean, pick off the scabs, and bleed the wounds. I was hurting inside and out—a perfect storm of emotional weakness and physical breakdown—and I required the full embrace of the dark fog and white heat that anger and grief bring. I needed to acknowledge the weird fragmentation of staring at a shortened life, while simultaneously attending to the pinpoint accuracy of knowing death. It was an out of the depths moment that left me exhausted and fatigued. And amazingly, despite the loud and anguished roar in my voice, another voice crept subsonically into my space. When I was yelling my loudest, something quiet emerged just below the range of human perception. Urgent and strong, soft and insistent, this new voice asserted its loving empathy into my consciousness. Now, as inadequate as I feel to the task, I need to share the love so to speak, and give you a hint of that voice that re-centered me.

How do we learn about love? For me, the experience has been a strange set of variations. I grew up, keenly aware of the difference between love professed and love demonstrated. I tried on different loves as most of us do, casting aside some, cast aside by others with callous indifference or wrenching awareness, swirling in the laser beam heat of firsts, and somehow, with very little planning, and probably less skill, arriving at a place where love became a blessed way of life. I learned that loving is wonderful and delightful, and sometimes you love so much that it crushes your insides. Stand in a hospital room with your two-year old son and listen to doctors suspect leukemia, and you know what I mean (thankfully it wasn’t). For me, nothing brings this crazy jumble home more than the experience of sharing my love of life with the loves of my life—my partner in crime Ev, my sons Dave and Jon, and now paying it forward with the loves they bring into their lives and subsequently mine, the remarkable young women that have become a part of our collective, conscious whole. God it is sweet to breathe them all in, to hold them in my thoughts and be in their presence. It is a honeyed whisper that tickles the ears and blows a breath of life bigger than anything dis ease can do. Last week’s meltdown removed the dust, dirt and accumulated grit and left these loves gleaming in the aftermath.

Then of course, there was the revelation of love from friends. So many of you wrote with variations on a theme of “Whine on brother, whine on!” Some of you went so far as to say I deserved to melt down, that it just isn’t natural to go through dis eased living without resenting the prizes won in the great game of “ALS Sucks.” Some of you literally stepped up beside me and said that if I was going to curse God and shake my fist at fate, well you’d like to be there shaking your fist in solidarity. I guess it just surprised me, but why should I have been surprised? The love that you expressed, the care you revealed, the permission you gave was like a healing balm that I’d bottle if I could. It isn’t that I miraculously made peace with my dis ease, but the loving connections with friends helped me stop feeling sorry for myself. Even more importantly, I found myself reflecting on how lucky I was. It was another variation on how much I love this life-gig, and I’m just not ready to give it up yet. It was a gift of insight that broke through the outsized blindness dominating my senses.

Then there were the gifts so many of you sent. A friend from long ago shared the remarkable Caring Bridge blog of a former student of hers. I need to ground the context here. In every school I have ever been, there are former students that, when mentioned, bring a mist to the eyes of their teachers and a reverence for just how remarkable young people can be. In 1993, I remember watching faculty and students drop everything when a young graduate from the year before would return to Bangkok to visit with family and friends. Now a Mennonite pastor, she is writing her rapidly metastasized melanoma, three small boys, loving husband, and her community into her own dis ease diary. She acknowledges how fleeting this life-moment is, and she speaks her fear that her boys will not have her for much longer. Her love for life seeps out from the everyday experiences that go with balancing seemingly irreconcilable differences–radiation treatment with mothering a two-year old, excessive fatigue with the life energy of a loving husband, caring for a community with the care of her community. Her words are wonder and awe and humor and crushing sadness and anger. Reading her thoughts centered my thoughts. Hearing her voice her dis ease, opened me to the song of my dis ease.

So let me share something with you, something more intimate than any maelstrom of self-pity and anger that I could muster on a blue October day. Deeply spiritual and achingly human, a paraphrase of the great mystic George Herbert, I was reminded that, “Love bids you welcome.” For me, the white heat of cursing God and fate, meant to disabuse humanity about who I really am, revealed instead the holiest of loves, and dare I say it, the holiest of lovers. “Lover,” literally “one who loves,” has all kinds of other illicit meanings. Too bad! The lover’s clarity for me this week was the God-kiss from friends, family and strangers, reaching through the fog, and hanging in my skies, like a clear autumn sun. I emotionally dumped all of that stuff thinking that I was writing with permanent marker on my soul. Instead, it washed away like dust off my hands. And I think, that is the point.

You are lovers, as am I. In the pain and suffering that reminds us just how human we really are, is a voice urgent with its message of reassurance. For me, the centering prayer of a brilliant young woman seeking to remain a vital force in the lives of all she loves, reminded me to listen for the voices that live in all I love.

And I swear to God, those voices whisper, “I love you. I love you.”

Loving life is bittersweet. As the weakness of ALS careens recklessly through my body, caressing it with the breakdown of my physical being, the intellectual and spiritual strength of ALS calls my soul to listen to the voices vital to this life. It asks me pointedly, “Are you open to love, or are you so angry that you will not feel? Do you want to live in the fog of self-annihilation, or the clear morning sun of the love that surrounds you?” I realized that what I said in my hurt and grief and anger and pain, all of it was because of how much I am in love with this beautiful life. And I realized that the fog surrounding me only needed the burning clarity of a meltdown to reveal that the love in my life was always there, always present, always whispering its strength and encouragement if I would only pay attention. You can call it whatever you want—God, the Buddha, energy and chakras, good friends on an autumn day—it is a voice that sings life. And sometimes you just have to be angry enough to hear it.

The Tell

With the first diagnosis of ALS, Ev and I realized that our new status would be both comforting and overwhelming to our friends, family and colleagues. We knew we had to share our news, and in that knowledge, we kind of stumbled into a space that I came to call “The Tell.” The Tell was both planful and spontaneous, sometimes because we set it up so that close friends could share intimately, and other times because it just happened. That experience continues today, as both of us still have circles that are unaware of our new normal. I still run into people who see me with a cane and ask, “What did you do?” Invariably, my first statement is, “I didn’t do anything,” but I am left with the decision of The Tell, knowing how odd the person will feel if I go on to reveal why I am on a cane, and knowing how odd I will feel if I just leave it up in the air.

I’ve been trying to figure out how to write about The Tell for a long time, partly because it is so seminal to my dis ease experience, and partly because I am afraid that I won’t do it the justice it deserves. “Tell” is a distinctive word. As English speakers we usually associate it with its narrative definition. This verb form is key to what I want to discuss today, but there is also an archaeological definition that offers insights into the word. In the Middle East, a Tell is a mound containing layers of civilization, one built over the other. The noun illuminates the dis ease experience, as each of us grows to become layer upon layer of events and knowledge, unease and dis ease and comfort and joy built one upon the other. Our private archaeology mixes relics with relics, up and down the strata of our psyches. It is what makes us so complex and unique, so beautiful and dangerous.

So Ev and I constructed our version of The Tell. At first, I think we expected The Tell to be about our own grief and shock, and to a point it was. But what I soon realized was that news like, “I have been diagnosed with ALS,” spawns an incredible range of reactions, and the dis ease experience is not just in the teller, but also in the told. I learned quickly that there was no comfort and great comfort in telling. I learned that the profound sense of truth that I owned in my diagnosis had no bearing on the ways that friends and family reacted. Some responded with denial, others with anger. Some expressed hope, and others quiet acceptance. The presentation of our vulnerability and dis ease inspired human expression that ranged from the holy to the profane. As we shared our dis ease, we became conscious of how many of our friends, family and colleagues carried their own dis ease as well.

This is where the archaeology of The Tell comes in, for it seems to me that each of us is like those Middle Eastern mounds–once you dig past the top layer, long buried and hidden life artifacts become apparent. Some of those artifacts are pure joy, and some are horrifying. What we learned to expect was that sharing our dis ease invited others to share theirs. Since my diagnosis, I have heard stories of terminal illness, broken relationships, physical and psychological assault, hopeless addiction, flat out discrimination, physical challenge, abuse—dis ease that represented life loss and life hope dashed or realized. There have been many dis ease story tellers. Some would qualify their experiences, “I know that this doesn’t measure up to ALS,” while others would tell me stories that made my dis ease feel like I had dodged an atomic bomb. I always understood that we humans carry our past and present pains and joys, as well as our future hopes and fears, just underneath the veneer that we present to the outside world. I just didn’t realize how present those pains and joys were. Truly, it has been like traversing an archaeological dig, with each Tell illuminating a personal story and the human condition. It has been a gift of privilege and healing.

There exist institutions, specific to different kinds of dis ease that help people to tell—Alcoholics Anonymous for example. I have discovered my own institutions through the internet forums built for my brothers and sisters in ALS. These places are raw, and yet they heal. They often predict the course of dis ease, but they also offer ability in the face of breakdown. In these places, The Tell is not abstract, but achingly human. Often, I see inspiration and despair in the same sentence, uttered by voices already taken, and here is one of the things that is profoundly touching. Those that can find a way back from the normal brink of sadness and grief invariably talk about a friend, a partner, a lover, a family, a colleague that continues to embrace them in spite of their emotional or physical condition. Those that spiral into despair believe they are alone.

I am strengthened for my dis ease journey by the human experience of connection. When I am able to be with those who balance their ease and dis ease so that life goes on, who reject the disabilities that others of less creativity imagine for them, and who embrace the new abilities that they have learned along the way; these people strengthen and energize me. When I imagine myself cut off and alone, my vision is literally oppressed into a gray despair. I don’t want to oversimplify, but it is when others share the new abilities they have learned from dis ease, even when these are most subtle or even unconscious, that my own burdens seem less disabling and my vision seems clear.

Dis ease gives us the choice of The Tell. As a noun, it is acknowledging the messy jumble of all the layers of our experience. As a verb, it is the truthful sharing of how we feel. When I see the inevitable spiral toward the great gift that dis ease brings, I know it is the gift for which I have prepared my whole life, fully and humanly shared. Whether we wish to admit it or not–liberal or conservative, rich or poor, religious or atheist, gay or straight, black or white, English or Spanish–each one of us carries dis ease and the choice of The Tell.

To paraphrase George Burns, dis ease is not for sissies. Dis ease offers The Tell as the very human gift that can mean growth in capacity, even as ability shrinks. Through The Tell, I have learned just how resilient and brittle humans can be. Through The Tell I have seen how dis ease debilitates some and strengthens others, enhancing vision or blinding the bearer, marking where we were and indicating where we are going. It is truth in the narrative, and it is truth in the archaeology.

All of us carry dis ease. All of us seek to ease the hurt. All of us have choices, and all of us have no choice. It is the knife-edge of the present that each of us walks. It is the omnipresent question—will we be strengthened by the dis ease journey, or will the journey overwhelm us?

For each of us, only time will tell.