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.