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.


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.

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.

Another Moving Experience

I didn’t write last week, and here is why.

We moved.

Even for the most able-bodied, moving pries loose all kinds of carefully constructed emotional architecture. For me, it was centered in utility. My emotional buildings crumbled with how obvious my physical decline had progressed. Another way of saying this is that basically, I was useless. In Indiana, we used to comment on the utility of mammary glands on male pigs, and that was about as useful as I was in the move process. I watched in wonder and awe as 17 different people swooped in to help Ev get the apartment emptied, everything stuffed into cars and vans, and brought over to the other side of town to meet me with the movers bringing in the furniture. People brought food and humor and love and the most incredible energy. I sat off to the side and tried to stay out of the way as this grand experiment in living space–aesthetic accessibility–was filled with furniture and boxes and smiles and laughter. I am still recovering, still seeking to shore up the emotional constructs that allow me the personal integrity so necessary to living with dis ease. It is the carpentry of living, all the while knowing that death stares you in the face.

Let me tell you about life and death, this part of the emotional rockslide the move inspired. The move is life and death, for this move is my last. I can almost guarantee it. This is the place where I will die, if I have my way. It faces south with incredible light, and that is where I want to draw my last breath–in the light of the day with the light of my loves all around me. I know how this sounds. When you move for the last time, you start thinking about the last of your time. But the move also points out to me why I love this life so much. Every single person who came to help is someone that I have a special love for. And I love to be with them. And I love that I love them. The light they brought was positively breathtaking, and it was all I could do not to cry as they ripped open boxes and wiped down dishes, placing them in an order of which Ev and I are still discovering the rationale, the logic, the purpose.

And the condo has turned out beautifully. It has a flow to it that is liberatingly peaceful. Every passage is wide enough for the power wheelchair. Every space has a turnaround. The bathroom is roll in ready. No more running into walls because the turn cannot be physically made. No more bathroom adventures. And Ev picked such beautiful tiles and granites and stone and colors. I come home and, in spite of the clutter of unpacked things, I am at peace. That is the way it should be.

The kitchen is especially beautiful. Designed by and for me, I will never get to fully use it. I don’t even have the strength in my arms to chop veggies anymore. Yet, I look forward to watching my sons and friends and Ev cook in this space, and I will vicariously live through them as they do something that was old normal for me. I used to love to plan, to strategize, to juxtapose a large-scale meal for family or friends. I cannot think of anything that says I love you more than cooking for someone. When I was a young man, I courted Ev with good cooking. As parents, Ev and I strove to hold an evening meal where we all sat and discussed the good and the not so good together, reveling in family even when the boys thought family was a pain to be endured. But it has always been the food that brought us together, and this space has the ability to care for loved ones through the breaking of bread and the preparation of the meal in a way we have never known before. There is love and passion in cooking. This kitchen embodies that life-joy.

Of course there are new challenges. One of the downsides of this place is its location. You have to drive in the burbs, and driving is one of those pleasures that is harder and harder to negotiate. My arms and back muscles are significantly weaker. Transferring requires more planning and precision. Moving to this place means I will need to figure out transportation when I am no longer in the driver’s seat. Moving means new reliance on others.

See a theme here? Driving is not mine for much longer. Cooking is now beyond me. Moving and unpacking is a spectator sport. I am still here, but the move holds up a mirror in which I don’t quite recognize myself. Moving points out loss, reflects challenge, encourages reflection.

It is the last great adventure, realized through dis ease, through ALS–living and dying. I accept this reality. I practice and practice and practice. I practice humanity and serenity and perceptiveness and sensitivity and quiet. Underneath this great delight in living, is a knowledge of dying that is neither sad nor joyful, but deeply felt and critically understood. The only sadness is in feeling it has been too short; the greatest joy is in knowing the same. None of these musings mean that I am planning to die anytime soon. They just mean that I see so clearly how much living is necessary, to truly squeeze every drop of life from these last moments that I have been given. There are things I hope to see in the life I have left, none related to physical geography. They represent my loves and passions, like a topographical map read by touch.

When I leave my career, I hope there is so much purpose and efficacy and efficiency, that it won’t even be noticed that I am gone. I want to leave my sons clearly on a path that is sustainable in love and light, with the persistence and the resiliency to face the challenges that are present and the ones that are yet to come. I hope my friends will smile at some memory of me. And of course, I want Ev to feel so grounded from our time together, that she can only live a joyful life beyond. I want her to be happy.

In reading this over I’m thinking that it sounds pretty morbid. That is one way to see it.

One of the gifts of ALS is the ability to cut through denial. I’m just writing what walls hear. For all this morbid focus, I am remarkably alive with more to live for than ever before. I want to see sons and daughters-in-law grow into life, to hold grandchildren, to share music, celebrate friends, and breathe Ev, and Ev, and Ev.

I am guilty of so many things, but one of them is not fear of death. I am guilty of wanting way more of this life. I am guilty of getting caught up in the trivia that fools you into thinking it is meaningful. Above all, I am guilty of loving life too much, while recognizing death more and more. But I’m not dead yet.

I’m just moving into new and unexplored space.