That Which Does Not Kill Me

As expatriates living in Egypt, we walked a fine line between the laughable and the ludicrous, sometimes within seconds of each other, and often in the same situation. With so many possible stories from which to choose, I hope you will indulge me in using the local beer – Stella (not to be confused with the Belgian Budweiser) – to illustrate. Stella came in oversized bottles, green or brown, that had to be held up to the light in order to see whether “floaters,” usually some unfortunate cockroach seeking an early sample of the brew, were present. And more often than not, the carbonation had seeped out from an improperly installed bottlecap. Drinking Stella was at the very least a question waiting to be answered, and sometimes it became a great adventure, more than anyone should have just for the sake of drinking beer.

 Local entrepreneurs played upon the quality control of Stella beer. They developed specific fashion lines for the expatriate communities so that two extremely popular T-shirts sold in our ghetto environment were Stella – inspired: “Stella Beer – 10,000 Cockroaches Can’t Be Wrong!” and my favorite, “That Which Does Not Kill Us Makes Us Strong – Stella Beer.” Who am I to argue with burgeoning capitalism?

From my dis ease and ALS vantage point, “That which does not kill us makes us strong” garners a much different meaning than my interpretation of 25 years ago. As I look back at my old normal, the saying might actually be one of the primary stanchions on which I built a major part of my life. “That which does not kill us…” smacks of running at the speed of light right up to the edge of personal disaster, just to see how long you might totter before going over. A false implication of immortality exists in the saying. For many of us, “that which does not kill us,” actually becomes “nothing will kill me, and I will always be strong.” It only takes the kind ministrations of dis ease to contradict the immortality and blur the meaning.

If you know dis ease, then you know a confluence of negative events can be deadly. It can happen very quickly as in a horrible accident where one poor decision cascades into fatality. Or it can happen in slow motion; a floppy foot, a couple of falls, a lump, a hematoma, a diagnosis. It isn’t the speed of the event itself, it’s the confluence, and at some point no matter who you are or what the circumstance, it becomes too much to bear, overwhelming your humanity into a new existence marked by your certain demise. But our human existence is also marked by denial. Since the time of my diagnosis, well-meaning people have shared that “God only gives you what you can handle.” I usually thank them when they say it, for I know they mean to offer me comfort. But such a statement is one that obfuscates our human condition. Something out there will kill us.

This past week, I Skyped with a friend with whom I had not spoken for years. Our conversation, framed in connection and catch up, found us trying to explain in the space of an hour some of the most meaningful events in the time since we last saw each other with all of the success one might have teaching nuclear physics to a three-year-old. Both of us struggled to overcome language and context and emotion and time, bravely seeking to re-create connection. Each of us had a story to tell about our kids, and that story contained real fear – palpable, tangible, sweat streaked and tear stained and just distant enough to allow us to relate the stories in straight tones, yet present enough to still invoke the powerful fight or flight that only a parent experiences. I think that one of us even said, “That which does not kill us…” in an attempt to rationalize tough times in the lives of our kids and the fear we both carried.

We are both old enough to know life’s great lesson – it will always give you more than you can handle.

It isn’t difficult to apply what we both know to my present situation. I have never had a teacher like ALS – so demanding, so exacting, so focused on the outcome. ALS schools me to remain psychologically upright even as she lays me flat. ALS requires me to strategize independence, even as she diminishes my body, forcing me into dependency I neither seek nor want. ALS reveals gradual and sudden loss – pure, heart wrenching, gut scalding. It might seem her real lesson is, “That which does not kill us, actually will,” but I keep learning that one must not end with the obvious answer. The depth of my teacher is far greater than being simply overwhelmed.

We are taught to believe that we have control over things that we do not, that we are personally responsible for such control while life belies the fact. Paradoxically, we know our control is miniscule, dwarfed in its comparison to God the universe and everything, so it might seem our only choice is existential angst. Deeper learning seeks reconciliation, so that through the requirements and diminishment and loss, ALS whispers to me to have faith; the lessons are deeper than the losses, each loss is a teachable moment, an opportunity to grow until growth is no longer possible, a roadmap to the ultimate outcome, a faith in more than the fact of loss. ALS quiets the noise revealing human music and God singing in great statements, credos of faith that we are here in the moment with no influence on the past, and a future always unclear. And if we choose we can go it alone, or we can embrace our big messy human condition together in the struggle to understand a world that of necessity must always be just beyond our comprehension. The noise abates, and what is left is a teacher’s purity.

Open your heart. Breathe in faith. Embrace your humanness. Glimpse God. Sing.

We will always be given more than we can handle. We will always have the choice as to how we respond – collectively, singly, the great choral hallelujah, the quiet solo aria. There is space for both so that in the end when we must go gently alone, the gift becomes apparent if you have eyes to see or ears to hear or skin to sense. That which makes us strong is what we can shoulder in concert, in tryst with each other, blessed by the communion of saints and sinners with lusty voices trying to go it together until we are released into the magnificent universe to rejoin that which we cannot understand with one, great, hymnal, solo aspiration – a final ah.

I think you could drink to that, although if it is a Stella beer, you might want to check for floaters.

The Voices

The Voices

I have been thinking about the connection between voice and breath as a way to understand this new existence framed by my now official disability status. For persons with ALS, the physical manifestation of voice holds added meaning–bulbar onset usually means we lose our voices quickly in the dis ease progression, while limb onset means we agonize and worry about the vocal loss freight train rumbling toward us at its own unstoppable pace. You can measure vocal loss by the tinny electronic voices synthesized for our use. Of even greater significance is the breath. We who attend ALS Clinics or who participate in Patients Like Me ALS forums are well aware of the Forced Vital Capacity measure. Once it drops below a certain percentage, we are ineligible for most drug trials, causing pulmonary specialists and neurologists to start talking bi-pap or worse. The irony of the juxtaposition of my former life as a choral musician focused on breath and voice, with my dis ease that seeks breath and voice eradication, does not escape me.

When you direct a choir, one of the most important things you work with is refining the voice, the instrument of the choral experience. The voice is unique, intimate, indicative. In times of anger or sadness or lust or joy or any number of other descriptors that define the human experience, the voice more often than not shows first effect and last recovery. Under such circumstances, even the most rigorously trained cannot hope to vocally project without betraying emotion’s effects. While most of us learn to pay attention to a person’s body language, my choral identity taught me to listen more than look as a way of checking for truth. This was pretty useful as a high school principal as I could often detect small telltale signs when one of my kids was struggling to keep something out of their voice in order to obfuscate the full story. And it was a skill I continued to cultivate even as a college professor and administrator. It just helped me to be more empathetic, to hear the story around the words, to help construct a narrative we all could live with, agree on, even discard when no longer needed. All of this came from my early vocal training.

Humor me. I need to go back to the basics to sort this out.

The voice is dependent on breath. In an amateur choir, if you care about the quality of the collective sound, you probably spend more time on breathing and its association with vocal production than everything else combined. The breath is the foundation, the root, the connection we must establish and maintain for the voice to have presence, space, focus. If you are not connected, then the voice becomes reedy, airy, unsupported, out of kilter with the body and, believe it or not, disconnected from the soul of the music. Breath brings richness and presence and confidence to the most unsubstantial voice, and I often found great joy when a singer suddenly discovered the power she or he could project by attending to the breath. One of the outcomes of teaching choral musicianship was literally supporting my beloved singers in finding their voices, but even beyond this discovery was the hidden knowledge of the breath. In breathing is the most basic component by which we define life. You can perceive the sacred and profane in vocal production, determined by the holy life force found in the breath.

Or, another way to say it–if Pavarotti’s voice was God manifest, then the air he breathed was the Holy Spirit.

As a well inculcated western white male, the breath under my life-voice has always been a combination of my family, friends, work and holy spaces. It should be no surprise that I struggle to find my way into this new disability space since I was blessed with the good life’s work–preparing professionals to raise children to meet their potential, to effect wise leadership, to heal the rendered soul so life can move on. For me, the loss of my formal work is a kick in the gut, wind knocked out of me experience so that my underlying breath is out of kilter, and my new voice feels reedy in its quality. It isn’t that I am not breathing; I am just not supporting from the diaphragm, both literally and symbolically, as I used to do.

You probably noticed I did not post last week, with no explanation offered. I laid out two different blog entries using Dragon speech-to-text software, and in spite of vocally composing the pieces, I could not find my voice in the composition. It was like speaking down the large end of a megaphone–jumbled dumps of words with no center, no focus, no spirit crowding into the small space at the end–words tumbling out with no spiritual grounding, no real meaning except a chastising self-accusatory rant. Better not to put that out into the ethers.

And of course I set myself up with airy expectations of what one does when one “retires.” By now, I would have learned the software on which I must become more and more reliant. By now that book would be intellectually plotted. By now, I would have answered so many nice notes to thank people for their kind wishes and love, not to mention returning phone calls and thanking the countless lunch buddies generously checking on me and making sure I was fed. By now, I would have conceptualized the meta-analysis that would lead to revisiting failed ALS trials in combinations ripe for new conceptualization and success. By now, by now, by now…. Really, it is only today that I can admit the ravaged voice of intention without breath support.

In the past with this sort of challenge, I turned to concrete tasks. And last week was no exception. I organized and fixed the database that holds all the recorded music we own. I should have done this years ago. The ease with which I can find my daily soundtrack is delightful. But even here, I cannot escape the reality of loss. My left hand has now become a one finger wonder and as I type, it refuses to follow through or hover, dragging creatively random spellings into my attempts to standardize the labels that imbue databases with their utility. So the tried and true is another lesson in loss.

I am missing something.

In a choir, in any musical ensemble that strives for wholeness, holy unity, there is something else that brings you closer to the face of God. Like life, choral singing requires a delicate balance between the empowerment of voice and the responsibility to the ear. And there it is. We listen so that we can be one voice comprised of many, powerful in our foundations and sensitive to each other and the call of the musical task at hand. And I must do the same.

If I listen, this is what I hear.

There is nothing wrong with sitting quietly on a cloudy day just listening, listening to the sounds around me, listening to music or poetry or words or the inner voice that speaks when all is quiet. Find the quiet center. Find the purest tone. Find the holy. Find the always present voice, often drowned, over washed by the noise of productivity’s need. If the norm is loss, let go of the need to gain. Let go of the need to hold onto that whose ending is already written in the stars. Live through the ending, knowing that there is beauty in every moment of every breath, in every song, in the silent spaces, voices and breath and music.

If I listen.

Psalm 39

Make me to know the measure of my days, O Maker of this mortal frame.
I would survey life’s brief and narrow space, and learn how frail I am.

Anthem paraphrase of Psalm 39, “Make me to know the measure of my days” by Shawn Kirchner

This past month has been a measure of many things, and the near future looks to be measured out with coping mechanisms every bit as exhausting as dis ease itself. If you have been reading between the lines of this quasi-documentary, you know that I really dread the SOP measurements associated with my dis ease. Although I hold deep respect and a dear love for the many professional caregivers in my life, each time I see them, the story is the same—what have you lost since the last time we saw you, and how can we measure it? Generally, the measurements are private, as in the patient questionnaires I answer, or the oxygen saturation measurements or the FVC measurements, or the measurements of my word speed, large muscle strength, swallowing, cognitive functions, or any other number of measures that do nothing but document the dance of loss fomented by cruel yet consistent ALS choreography. But this week started a different set of measures, not so private, not so easily camouflaged as I have managed in the past—public measures of my stamina, my driving, my communication, my public responsibilities layered one after another. Their success is expected and their failure a statement of loss greater than I can afford if I am to effect any modicum of success in this current life path that still holds so much meaning for me. Probably nothing brought this home more clearly than the driving assessment I took on Friday at the Courage Center.

The Courage Center is a remarkable place, set up with a mission that those with disability will live life to its fullest potential. How could I not feel safe in such a space, yet in a déjà vu moment, it was one of those experiences where the guy playing the part of passenger, fulfilled the role of the one in the driver’s seat, presciently walking me through driving’s future. Steve has been at the Courage Center for thirty-five years. He works intimately with any number of neurodegenerative dis eases including ALS, and he knows the implications of not being able to drive. So he set up a driving experience that was about two-and-a-half steps better than my current system, and put me through my paces to see if he could tire me, or distract me, or just plain find a reason for me not to drive. It was informative, and it allowed me to question capacity and capability as we talked about the cost of further modifications to a van that has already been heavily modified. Should I go to zero-resistance steering? Should I get assisted braking? Put the EZ Lock system in so I can drive easily from my wheelchair? And if I do these things, how long will I get before these modifications are not enough? What is the measure of my days of driving, and is it worth it? As Steve pointed out, “In this country, driving is your freedom.” No kidding! Measure for measure, I did fine in his carefully crafted testing of my capability, but to what end?

And if that isn’t enough measurement, then the coming weeks will brutally seek to publicly reveal the fatigue and weakness of ALS. Whereas up to this time, I have found little tricks for negotiating requirements and conserving energy for the next day and next and next, the coming three weeks have no downtime, no recovery, no space for blank stares at walls while my body slowly works up the energy to come back to meet the next big challenge. And the measurement of my performance in these numerous public arenas could raise the questions that I fear the most—“Is it time to hang it up? Is it realistic to rely on a dis eased person when his peers have left their work long before?” The measurement will be imprecise but brutally honest, and my own fear for my fortitude is realized in nightmares of publicly slipping up in a way that will inspire pity and quick leaps into stereotypical attitudes about dis ease and disability. Measure for measure, these are the cruelest ones I know.

And the measures keep coming. Dis ease’s cruelty arrived with a simple, anguished Caring Bridge post from one that I have never met but have come to know and love. She is young, so she aggressively pursues an active battle with a recurrent cancer that backs her into a corner where every possible move looks like checkmate. She has a beautiful husband and children, and she has dueled gamely with her dis ease for long enough so that from a purely logical perspective, hospice should be her right. She has met the 99.9th percentile, defied the mortality odds and squeezed every drop possible from her way too short life. I so admire her gumption and the gumption of her family as they clearly communicate that she is not ready to give up on this last gambit. And yet in the end, I detect fear and anger, and an unspoken realization (and possibly relief?) that the end game may be playing out. Cancer takes her measure, and she is just short of its insistent, unavoidable requirements.

You can guess that my true love sensed the anxiety and angst beneath the musings above. And even there, the measures just added up to loss. “Come and sing with me,” she said in an effort to pull me out of my Saturday pout. And Henri Duparc took the measure of my voice and said, “You have no business accepting any invitations to travel on this voyage.” I just couldn’t find the breath in it. Finally the questions came tumbling out in measures of music not performable, and they forced me to face questions of measure of my days.

How do you know when it is enough? When does the realization that it might be time, hit you? My experience of loved ones in hospice feels literally like one day we were outside the hospice, and the next day we were in, with nothing in between. In retrospect, I know that this isn’t true. The events that lead up to hospice were insistent and present, and hospice was not unlooked for. But the day, the hour, the minute the decision was made, seemed like it came out of nowhere with nothing but denial standing in the way. Is that how driving will be? When did the cane, the walker, the wheelchair, the bedrail, the grab bars, the van go from prudent choice to absolute necessity? What is the measure of what I have retained, and how long can I count on these capabilities? Sometimes it seems that we are so busy counting my losses, that we fail to realize the critical moment that embraces the numbers and defies them with aching, measured humanity.

I turn to Kirchner’s poetic Psalm 39 again:
See how the rushing race of mortals move as mere shadows o’er th’eternal plain.
They rage, strive, desire and love; but all their noise is vain.

As I realize the movement and measure of loss in each day, the vanity of the noise is crushing. And it takes every bit of energy I can muster to reach above this fog, to ask for healing when none can be found, causing me to ask, “How long, and how long?” If you have been reading between these lines of dis ease, you recognize the spiritual strength I receive from my sons, my wife, my friends and the work that I still deeply love. And in the end, there is the answer, measured out in dribs and drabs of energy and strength.

There are many musical settings of Psalm 39. Admittedly, the frailty, the human vanity, the realization that we are only here for a moment and then we are gone, speaks worlds to me, but just as music focuses measures of my mortality, so too does music illuminate a different meaning for the same. Johannes Brahms also set Psalm 39 in his German Requiem, only he continued past Kirchner’s sadness asking, “And now Lord, what do I wait for? My hope is in you.” I guess I can admit to measures of strength from an old German agnostic’s take on life’s frailty.

And in the breath of those measures, I can see my way through the immeasurable, as hard as it will be.

Dis Ease(ter)

The week before Easter, the week of Passover, Holy Week, was a blessed week, in spite of the fact that dis ease was my constant companion. I have to remind myself to get my head around the fact that dis ease and blessing are often one and the same, although mind you, I am not waxing eloquent in favor of ALS as the path to enlightenment. I just find that the blessings of dis ease are far more important than the symptoms. During Holy Week, the blessings came in three, even though dis ease was all-pervasive. Without the blessings, I would’ve been overwhelmed, but for some reason, just as despair would nudge its way in, here would come love or care or joy in a way that nudged it right back out.

Early in the week came a visit of a dear friend whose parents have significant health issues. We were going to visit to plan other opportunities, but that is not where our conversation went. Instead, there were tears about loss and transition and potentialities and realities. What a blessing this was. Once again, I was brought face to face with the fact that the ultimate human experience is in shared vulnerability, not in matched strength. I know that this seems counter intuitive, for overpowering others with our own strength of will would seem to be the most protected state we can attain. But believe me, that is a lie from which whole economies are built. There is a connection, overwhelmingly human, that takes place when we share our dis ease. Crying about loss, both anticipated and real, connected us in a way that we had not anticipated, and left us with a clearer sense of direction and trust than if we had just planned the plan and executed the product. It was the strength of connection that continues to amaze me in this physical cycling down, that as I grow weaker, I feel the love and meaning through my brothers and sisters growing stronger.

The next day, Ev and I visited with 150 first year medical students at the request of my friend Dr. T, who lectures this group each year. It was remarkable. We joined two other persons with neuromuscular dis ease, one accompanied by his spouse, to discuss symptomology and diagnosis. Had it remained in the physiological realm, I would not even relate the event, but Kathy, the other spouse got the ball rolling by talking with these young doctor wannabes about the human costs of ALS. She told the story, neither asking for pity nor requesting their sympathy, carefully drawing these “first years” in and showing them that her husband and their family had hopes and dreams and disappointments and difficulties. She didn’t complain. She didn’t bemoan her fate. She spoke with the grace that I have seen with so many in dis ease, accepting the gifts and projecting humanness in such clear, cleansing terms. When it was our turn, Ev was asked, “Is there anything you want to add?” She thought for a moment and then said in her quiet, warm Ev voice, “Remember that it isn’t just the person who gets the diagnosis. ALS splashes all over the family and friends and loved ones, and they require your care too.” Her words were like pure rain on the dusty field of minds crowded with symptoms and diagnoses and objectivism. I was privileged to hear them both, and blessed as their words surrounded these medical students with a different form of care.

The following day, Maundy Thursday, brought the monthly lunch with the choir posse. Because Ev was on break, she could also attend, and we had a wonderful hour with friends as we sat together and talked about everything from the upcoming service, to Ev’s and my foray into the medical school. Nothing profound was planned, except the friendship that dis ease inspires. And this friendship was recapped on Sunday at our church’s Easter service. Our tradition is to invite anyone from the congregation to join the choir in the loft at the end of the service to sing the “Hallelujah Chorus.” Of course, I cannot get into the loft, but Ev and I gamely made our way down and located ourselves as close to the organ console as possible. And all of a sudden, we were surrounded by choir members who left the loft and joined us to sing. I cried. I sang. I marveled at such incredible joy and love. What does one do with such friendship except sing it back? And I don’t care how tired you are of the “Hallelujah Chorus,” it is still a hallelujah.

One of the things that I have always appreciated about Easter is that it is preceded by Lent. Lent is about deserts and dust and despair and curiously, it is about temptation. I know a lot of Christians who ignore Lent so they can get to the “good stuff” of Easter. If you don’t welcome deep reflection, life questions, or feeling slightly off kilter, then Lent is not the season for you, for Lent is being lost in the desert, tempted by easy pathways out without regard to the long-term consequences of their travel. Lent is being thirsty with not a drop in sight, dust on your feet, never quite feeling clean and refreshed. It is the detritus of life, careening through tsunami sand dunes so that the flotsam and jetsam of your existence is etched away and your core is exposed in naked vulnerability. Lent is aloneness, cut off from all things that matter, questioning all things as if they mean nothing. Most of us don’t really like this kind of deep exposure of our essential selves. Most of us are uncomfortable with such vulnerability. It is no wonder we like Easter so much better with its new birth and Spring babies and freshness and gifts. These are much more desirable than stumbling blind and alone with nothing to really quench your heated thirst, and not really knowing what it is you seek.

Last week was Holy Week. For Jews, it was the remembrance of the Angel of Death’s Passover of the children of Israel. For Christians, it was the lead-in to Easter. Holy Week is about passion and triumph and betrayal and friendship and betrayal and triumph again. Passover for Jews underscores their chosen status as people of God. Easter is the culmination of the passion of Christ. Both of these conditions seem extremely relevant to me. ALS has bestowed upon me my own passion, and like the requirements of Passover, this chosen status brings great responsibility, a responsibility nearly impossible to fulfill. ALS chooses you for death, and then requires that you live through it until you die. It makes you responsible specifically to the passion and triumph and betrayal and trials that the Angel of Death might offer, or that you or your loved ones could betray.

The fact is that dis ease is Lent. It exposes your core to naked truth. It touches you, not with the hot breath of passion, but a cooling glance that freezes your center into an anxious knot that must be directly experienced to be understood. Yet, as I said at the beginning, there are blessings in this permanent Lenten state, for Easter arrives, and Passover hallows you in unlooked for ways. They tell you, “Don’t despair.” And I don’t.

As long as friends drop by for tears and laughter, and doctor wannabes will listen to the sagacity of wise women, and posses will not let us sing alone, there are blessings, and there is dis ease.

I choose the blessings.