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.

July 4

July 4

It is July 4th, and in the last two weeks, maybe even in the last seven days, more than one friend has told me I seemed a little “dark.”

And I thought I was hiding it so well.

So I will admit that I have had thunderheads round my eyes, that I have felt less connection, less space, less. I admit that something I knew but couldn’t acknowledge was taking place. I admit that I just wasn’t moving through the harder times, the more challenging times, the situations that were clinging to me with all of the grasping, cloying, olfactory, primal qualities of old smoke in the morning – hard to get rid of once it is on you, yet pleasant in small amounts as memory or flavor. I did not see the same darkness as my friends, but I now realize that the last set of losses, the last paper cuts, have been particularly hard to take.

I always overestimate my readiness for such things.

If you know anything about the physiology of the brain, you know that there is a great deal of motor cortex real estate devoted to the thumb, and I suppose that is why I have been able to keep some thumb function up until this point. There’s just a lot more that needs to be taken down in order for ALS to have its way. But now, my left thumb shakes, and it chooses its own direction in defiance of my desires.  And on my right hand, while my thumb is still somewhat functional, fatigue sets in quickly, so it’s functionality cannot be trusted. Add to that, the fact that my left side is always a little bit ahead, specifically that my left hand keeps informing my right of its future, and you have a recipe for a living Caravaggio* whose loss is less violent, less sudden, but no less significant.

So now here is the reckoning – no arms and no legs, no feet and for all intents and purposes, no hands. In the meantime, my neck grows weaker and and my sleep is inconsistent. I won’t even go into the challenges of ALS logistics. Each small loss must be translated into these larger, taken for granted arenas that most adults plow their way through (except for flossing) without a thought in the world except, “do I look as good as I possibly can.” At night I look up at Ev and sigh, “Sometimes, it sucks to be me.”

I’ve told you many times, I am no saint.

And yet, I cannot help but perceive a certain sense of purpose at work in all of this. It is as if a confluence of universal ethers has come together in a very personal way to teach me another lesson and another and another. My history is one where I stepped up in my youth and learned the skills required to keep a family running, and then I pushed those skills out into my own life. I realize now that many of the failures that I perceive in my first 50 years, were really my inability to translate my need to care into anything but my needs. I didn’t really learn how to care with any modicum of success until about 10 years ago, when I came to understand that human fulfillment is in the ability to translate deep care for all those with whom we cross paths, but in a way that allows such care to be reciprocated.

Please don’t read into this anymore than what was going on in my mind and my heart as I moved through the life that I knew.

Imagine that you have mastered some impossible technique, some skill set, some knowledge base, some attitude to a point where it has become like a second skin. Imagine that you are still approaching the apex of your purpose, your raison d’être, your life wonder, your grand opus, your artistic fulfillment, imagine. And then the universe writes across the sky a secret message that only you can read, “Enough! It is time to learn the real purpose.” Your head would swivel, your thoughts would lose their direction and alignment, and you might even be afraid.

I am afraid.

When my friend and teacher Matt asked me how I was doing, “not physically, but otherwise,” he stated that I seemed to be projecting darker.  I don’t like to characterize mood as dark or light, black or white, or any other arbitrary, colorful categorization. But when he said this, I realized that my grief was more present, more surface, more perceivable. It has not helped to see friends with ALS fulfill their destiny, nor to see brave caregivers in their own grief, and let me be honest, in relief that such a journey does have an ending. If you chose to perseverate on this reality, it could push your soul out of your body. But when Matt made his observation, I also realized that that while deeply challenged, I still do not despair. I have not moved through the latest losses as easily as before, yet I still see myself moving through. While the great lift that comes in the rise of the breath and the flooding of the lungs with blessed spirit has been slower to arrive, I have not lost my faith.

The fact is that none of us is truly finished until the great lessons have been learned. I learned how to push care, even for those who didn’t want it, so that my life was defined in a single dimension. Dis ease has brought me the spherical lesson over and over and over again, that care for requires care of, that caregiving requires caretaking, that caring space is not only physical but deliciously, consciously spiritual. I have faith that I will move through and become even more the person I want to be, the person I need to be. I am not finished; life is not done with me yet.

Today is July fourth, the day that our still very young and fragile and maddeningly frustrating democracy celebrates its own birth. There will be speeches and fireworks and movies and concerts and all manner of patting ourselves on the back. I will not be swept away by the speeches or music (except for Copland’s A Lincoln Portrait), but I cannot help but see the direction we are headed with the hope that at some point, our immaturity will give way to that which holds true meaning – that faith and love have far more significance than avoiding pain and suffering and death. That the remarkably gargantuan resources that we plow into death avoidance could be repurposed into life embracing, refreshingly chilled water awakening us to our possibilities, such simple love that when given, only multiplies and grows. I see this in my sons and daughters-in-law and dear friends and most of all my one true love, Ev.

It isn’t dark at all, and it isn’t light. It is faith in what will be, and the love that will come, and it isn’t as bad as I thought.

*Michael Ondaatje’s thumbless thief in The English Patient.

Letter to Cytokinetics

To: Cytokinetics, c/o Jeremy M. Shefner, MD, PhD, Principal Investigator BENEFIT – ALS

Dear Dr. Shefner,

I am a person with ALS, and I have recently completed the 13-week protocol for the study, BENEFIT – ALS, a Phase IIb clinical trial to evaluate the safety, tolerability and potential efficacy of tirasemtiv. I am writing to you to share my experience of the trial, one that required enormous commitment on my part as well as my caregivers. I am also writing you to make a request regarding how Cytokinetics, as well as other corporations engaged in drug research, might reframe their efforts as they seek novel treatments for orphan diseases such as ALS. Even though I was lucky enough to work with the Minneapolis site staff for the study, and they sought to lessen the logistical impact that the protocol required, the demands visited upon subjects such as me are significant. As of next week, I will have completed all the visits as required by the study, and I believe that my experiences might be informative on both a scientific and humanitarian level.

As you are aware, the protocol for the BENEFIT – ALS requires weekly visits that could range from one to over three hours. For a person with ALS, the planning it takes to get to the study site, securing a driver and a caregiver to help negotiate the way, and then the energy expended in the measurements and examinations is significant. ALS is a disease that results in great fatigue, and often, after an evaluation, I would find myself nearly catatonic with how tired I was. I tell you this not so much that you would change the protocol but so that you will understand the commitment that participation in such protocols requires. It is not as if I get in the car and drive to the site in a normal, able-bodied way. The preparation of getting dressed and cleaned up to come in to the Berman Center where the evaluations are held is only the beginning, and the actual protocol – particularly in the strength and pulmonary testing – is quite exhausting. Yet, I was happy to do it if it might push forward our understanding of a novel treatment for ALS.

My first visit for trial eligibility evaluation resulted in disqualification due to my ALS Functional Rating Scale (ALS FRS) lacking the requisite number of “2’s” and “3’s.” However, after attending the Mayo ALS Clinic, where I receive my treatment, and retaking the ALS FRS both at Mayo and at the study site, I was approved for the study.  I mention the Mayo Clinic because while I was there I was prescribed a neck brace in order to support my head and neck in the evenings. I was having great difficulty keeping my head up and the neck brace was designed to alleviate that symptom.

Since the study protocol required participants to take the drug for a week in order to blind us to the possible side effect of dizziness, I know I was on the drug for at least one week. Although I never experienced dizziness, I did experience another side effect that was actually positive. I did not need the neck brace again throughout the 13 weeks of the trial. In essence, I noticed a strengthening of my neck and shoulders so that it was unnecessary to wear the brace.

A second notable response for me was in sleeping. As you probably know, persons with ALS often suffer from different types of sleep difficulty. Some of this is due to the physical discomfort we experience. Some of this is due to breathing difficulty.  For some, anxiety interferes with sleep. Until the trial, I was rarely able to sleep more than two hours at a time, and I required constant readjustment due to physical discomfort. Unlike an able-bodied person, I have no ability to turn or change my posture, and my experience of sleeping was uncomfortable at the least and sometimes quite painful. My inability to sleep had other side effects, most notably on my principal caregiver and wife Evelyn. Not only is she my principal caregiver, but she also supports us by teaching in an elementary school. Trying to teach during the day after night upon night of interrupted sleep is very difficult for her.

Within the first week of being in the BENEFIT – ALS study, my sleep became much less interrupted and much more comfortable. I was able to put together 7 to 8 hours of sleep in three and four hour chunks. This was a remarkable development, and it resulted in less fatigue, a better mental outlook, and most importantly a rested wife.

On May 30th, I took my last dose of tirasemativ. The following day, I awoke feeling as though I had recently been in a street fight, receiving much more punishment than I meted out. I ached from head to toe, and it is only in the last two days (today is June 18th) that I have begun to lose a headache and bodily aches and pains that started over two weeks ago. In the meantime, I have consulted with an ENT over heightened ringing in my ears and perceived loss of hearing. Of course, I have also documented all of this with the research center, and they have moved to support me through prescriptions of potassium and magnesium and well–considered advice about water intake.

The bottom line is that where I felt the greatest effects of tirasemativ, study protocols did not measure. The measurement of sleep quality for persons with ALS is significant, and protocols need to take sleep into account. In addition, it would not be difficult to measure strength in other places besides pulmonary, leg, arm and hand. As I can no longer walk, you have received no measurements of my lower body strength. As I can barely hold up my arms, you have received less consistency, particularly from my left side. But were there to be some way in the protocol to measure an area where strength is noted when strength did not exist before, you would have data supporting muscle strengthening that could be analyzed through statistical meta-aggregation.

Please understand that I share with you these observations not just to tweak the science, but because I am a human being. I am not number XYZ out of the 30,000 or less people who currently have ALS in this country. I continue to hope for effective treatments, even though I know that drug trials will not result in treatments quickly enough that I might enjoy their benefit. I continue to hope that somewhere the human factors of how we do scientific research will be given as much consideration as the actual double-blind, placebo-controlled protocols that have resulted in one approved drug for ALS in the last 160 years.

I continue to hope that people like you will begin to recognize the futility of gold standard drug trials and push for more creative approaches that control independent variables, and minimize the objectification of subjects.

You have received a great service from the nearly 300 subjects who have enrolled in BENEFIT – ALS thus far. To cut even one of us off from the drug at completion of protocol – especially when some clear benefit has been experienced – saying that you have met your legal obligations and scientific responsibilities, is inhuman and a squandered opportunity. The humanity is in offering something that might make us feel a little bit better. The opportunity is in a readily available and committed population in which you could continue to study drug effect.

I do not know for a fact that I was on the drug, but the effects of going on and going off were certainly profound. If the drug is found to be well tolerated, why would we not offer it to those who have given their bodies for scientific research if they want it? Were you to offer tirasemtiv to me today, I would happily go back on the drug. Did it create strength in my legs or arms? I don’t think so. But a good night’s sleep and a stronger neck were meaningful results of my participation in the protocol.

Therefore I am requesting access to the drug tirasemtiv. I request this for myself and for others who find similar experiences within the trial. I offer to remain a study subject if that will advance the science forward.

Thank you for your kind consideration, and I look forward to hearing from you very soon.

Sincerely,

Bruce H. Kramer, PhD and person with ALS

Just Delivery

If you are paying attention, recall that I have written of how ALS circles around, how just when a suitable strategy for dealing with the current reality emerges, how just when the day to day living becomes something routine enough to handle, how just when comfort in the new normal is almost old normal; one more piece falls away, and the circle morphs into spirals down and down. I have written of circles delivered in packages sparkling with new knowledge or laden heavy with despair, packages complete, with no room for negotiation, no space for discussion, no rejection, no acceptance. I have written about how circling back is not for the faint of heart, for even today, five days after the event, with visits and dinners with dear friends and time with family in between, with the opportunity to physically process and psychically work through the latest loss, I am still amazed at how insidious my dis ease teacher can be.

It was the smallest of things.

I just finished a phone conversation with the editor for the MDA ALS newsletter. She had suggested that an occasional sampling of this blog might be good for persons and caregivers in the ALS arena. You may or may not realize this, but I am sensitive to anything that might be perceived as me speaking for more than me. It is not my intent for this blog to represent anyone’s experience but my own, for that is the only experience for which I can claim any deep knowledge. So I was concerned that in sampling the blog, I might be seen as overstepping the boundaries that I have set for myself. Such boundaries weigh heavily, and I take them very seriously. I am also very aware that for a number of people who read this blog, these descriptions of my experiences are close enough to their own experiences that voice is given where voice might have been silent. In the end, I agreed to the sampling due to her understanding and sensitivity to my concerns. It was a nice conversation.

And then…

My phone is on a piece of Velcro that sits on the right arm of my power wheel chair. It is not the most ideal placement for a phone. Sometimes when it rings, I have great difficulty getting my arm twisted around to slide the unlocking mechanism and answer it. Other times my arm is resting over the phone so that it is totally inaccessible. Usually I try to hold the phone so that I can point the microphone toward my face, as I lack the arm strength to actually bring the phone up to my ear. All of this is to say that were you in the field of risk management, you probably would have easily predicted some minor disaster with the way that I do the phone. Five days ago, I was just weak enough after the aforementioned telephone conversation, that as I tried to place the phone back in its right arm position, it flew over the side of the chair. In my effort to keep it from falling to the floor, my right arm became wedged behind the chair’s arm.

And there I sat.

This has happened to me before, so I didn’t panic. Instead, I tried all manner of ways to get my arm back on the chair. I tried turning my upper body, grabbing the leg guides with my left hand and pulling myself forward, flipping my right arm out and forward, even quasi-fishing my hand up with the seatbelt in order to get it back on the arm of the chair. After about 10 minutes, I realized that I was actually in real trouble. My arm position meant that I could not change the position of my body, which was leaned in just the right way as to constrict my breathing, and with it being my right arm, I could not reach the controls for the chair. I could feel my hand and forearm swelling with the gravitational pooling of fluids so that my fingers would not bend, and awareness slowly bloomed into the full consciousness that I was caught, trapped, unable to breathe deeply, unable to move, unable to perform the simplest of acts.

I watched the time tick forward, one minute, five minutes, one hour. Every once in a while I thought I heard someone walking in our building, and at that point I would yell as loudly as I could, “Help, help, help, help!” I soon realized that this yelling was pointless. It was just tiring me out, and making it more difficult to yell when the time might be right.

So I waited.

An hour and one half after my arm’s tumble, I heard the UPS truck pull up, I heard the rolling door clatter open, I heard the deliveryman come into the building, and I held my breath. Would he bring the package up to our condo? Would he ring the bell and dash off as he often does? Would he come to my floor, to my side of the building? I knew that I couldn’t allow him to get away. I started yelling, and when the doorbell rang, I redoubled my efforts, yelling at the top of my voice, “Help me, help me, please open the door and help me!” And this very kind man came rushing in, “I’m here, I’m here. Tell me what to do.”

I’m sure he was puzzled that all I needed was my arm lifted back onto the chair. I’m sure it seemed like such a tiny thing to him. I’m sure he had no realization of the relief that he offered, breathing and mobility and comfort. But he did it, and I spent the rest of the day seeking some equilibrium. My hand was quite swollen and did not want to operate the wheelchair controls. My body overheated with the exertion of trying to free myself, yet once I was free, sweat evaporated into shivering, teeth rattling, frozen to the core coldness. And when Ev came home, I was so relieved to see her that I burst into tears.

Welcome to the new normal.

Today, I know that our plan, our strategy to try to get me through to the summer at the level of care I currently receive, is not going to work. I am just too helpless, and I hate it. From now on, I need to make sure that somebody is around, at least checking in, just in case. In essence I have turned a corner into a new level of ALS. It seems like just yesterday I had chosen to begin walking with a cane. It seems like just yesterday that I gave up driving. It seems like just yesterday that I accepted that I needed homecare assistance. And today, I have to accept that the assistance that I need is far more significant than the assistance that I want.

I have no words of wisdom or philosophy, no frameworks from which I can turn these cold truths, no spaces of healing or warmth or acceptance from which I can approach this new reality. It will come, at some point it will have to come. But today, I am just shaken up by how easy, how fragile, how fleeting this gift of living is.

And that is quite a package to have delivered.

Susan, Dudley, and Eric

Sometimes, the choices presented by ALS’s complexity are overwhelming. This past couple of weeks have presented this reality, and while it is not been difficult to write, it has been difficult to write in a way that might effectively communicate the complexity at hand. This is my latest attempt, and if a little bit of anger peeks through, I hope you will be forgiving and know how hard I tried.

I just finished Until I Say Goodbye by Susan Spencer – Wendel, a journalist from South Palm Beach, Florida. In 2011, she was diagnosed with ALS. She is brave, with chutzpah and bravado, and that most human of desires to remain independent, to choose her own path even as ALS paves the road ahead of her. I get this attitude. It is incredibly difficult to make space for dependence in our lives, especially when we are used to the independence that we believe defines who we are. It reminds me in some ways of journalist and fellow Person with ALS (PALS), Dudley Clendenin.

You might remember Clendenin. Diagnosed with a particularly aggressive and virulent form of ALS, he wrote “The Good Short Life,” a column first published in the New York Times detailing how in the face of “Lou” he would seize his own death. While not revealing the manner by which he would kill himself, he was very clear about his need to take responsibility for the act. He expressed the same independence that I cannot help but read in Susan Spencer – Wendel’s book.

Spencer – Wendel has decided to kill herself also, albeit in her own way. She does this through a year of “living joyfully,” rejecting all medical treatment and, if she is to be believed, any willingness to help others through participation in trials or other such things. Her manner of suicide is not a gun or hanging or overdose or the other usual suspects. Instead, she accomplishes a hastened death through extended travel to see among other things the northern lights, Budapest, her favorite beaches, and the island of Cyprus in search of her birth family (she was adopted as a baby). Sometimes, she travels with her family but mostly without, clearly in tune with her own needs to make meaningful memories before she dies.

I need you to understand that I have no problem with a person with ALS exercising as much control over their own lives as possible, even if it means hastening their own demise. Until you face ALS and own it as your own personal dis ease, I don’t see how you can judge such words and actions. Until you face ALS, agreement or disagreement is purely speculative. And therein is a seed of understanding why I have had such difficulty and anger in writing about a fellow PALS.

When Dudley Clendenin wrote about his decision to off himself, it was because he did not want to become a “conscious but motionless, mute, withered, incontinent mummy of my former self.” Aside from the fact that incontinence is not usually a side effect of ALS, Clendenin only expressed the fear that all of us with ALS secretly or not so secretly carry – that somehow we will become “locked – in,” trapped in our bodies with no way out. At that time, the columnist David Brooks seized this imagery as a shining example of how those of us who are in a permanent state of incurable illness, should realistically address our responsibility toward lowering the cost of healthcare.

Like Clendenin, Spencer – Wendel also expresses such fear, and like David Brooks, mainline journalists respond from their own able-bodied frameworks. In an Amazon.com interview with Cokie Roberts, Spencer – Wendel is asked, “Many people with your diagnosis would either crawl into a cave or go from doctor to doctor trying to survive a little longer…” She answers:

The problem with a cave is it has no windows. And the problem with knocking on umpteen doctor doors is that there is nothing behind the door…I am not giving up. I am accepting…Also a major factor is my husband. I so want him to have a chance at another life. Not saddled with the weight of an invalid wife.

Scott Simon of National Public Radio, in his Weekend Edition interview with Spencer – Wendel declares, “This book is so funny,” immediately after asking Spencer – Wendel’s husband how he is doing, receiving the following answer:

“Well – difficult. Every day I wake up, I feel sad. That’s my first emotion. And then I roll over, and I look at Susan. And I realize that she’s not allowing herself to feel that way, so I can’t – and I don’t.”

Hilarious, right?

I think my greatest disappointment is in the not so subtle ratification that a life framed in disability is so easily judged to be less then living. From an able-bodied perspective, the storyline reinforces a Temporary Able Bodied myth long on issuing a hall pass for terminal living – no responsibilities, no problem – and short on looking at the consequences of such easy assumptions. It reinforces singular focus on the person with dis ease and conveniently disregards the family, friends and colleagues also affected. It reinforces the idea that life with massive disability is life not worth living, unhappy and unfulfilling, meaningless and unengaged. As Ev says, “Spencer – Wendel and Dudley Clendenin are journalists, and by virtue of that fact anything that they publish becomes authoritative.”

They do not speak for me.

I know another story of blessings and complexity and empathy. In 2009, Eric Lowen of the folk rock duo Lowen and Navarro, participated in a New York Times perspective called “The Voices of ALS.” Listen to his words.

The hardest part for me is the pain I bring everybody. The fact that my children have to deal with it and my wife, I wish I could disappear quietly. But it doesn’t work like that. That’s the most horrible for me.

He continues:

I thought at first I was going to live every day to the fullest and not let anything stand in the way, but then I got a hangnail, then I got a stomach ache…life is pretty much the same no matter what and the thing that has helped me the most is a quote from a friend of mine. She said, “We’re all on a journey. You just have a better map.” I think that’s the way it is.

I so get this it makes me hurt.

What seems to get lost in able-bodied frameworks is the message that life goes on, that ALS can be a life sentence, not just a death sentence. And while we cannot all be poets, Eric Lowen sang ALS in such a profound way until he could not perform any more, engaging in new life even as ALS slowly eroded the old life that was his. He wrote:

And it’s beautiful how new blessings unfold in ways I could never have known,

but I’ve still got some time on my hands,

I’ve had to run, I’ve had to crawl, been rich as a king and had nothing at all,

still raisin’ hell and tearing down walls, I know where I stand, I’m learning to fall.

– Lowen and Navarro, Learning to Fall

There is a postscript to all of this. Dudley Clendenin, a man who could not see himself living with ALS, prolonged his life, even agreeing to a feeding tube. Why? I cannot be completely sure, but he was offered a book contract to tell his remarkable story. The book contract offered him the opportunity for re-engagement with humanity on terms he was able to quasi-define. He died in May of 2012 with his boots on, having sent the galleys of his new book to his publisher.

And that is the real point. We can either die while we are dying or live to the fullest. But massive disability is not the determinant. It’s learning how to fall into new blessings.

You can watch a video of “Learning to Fall” here.

Vulnerability in b minor

This past week, I made the mistake of reaching too far, my hand stretching behind me for something beyond my grasp on the floor. In the process, my arm became stuck, lodged behind the arm of my wheelchair, my ability to lift it back blocked by the weakness of my upper body. I sat there for a few minutes feeling really stupid, my predicament slowly dawning on me, panic creeping as the realization that I was alone and there was no one to help me became more and more obvious. I’ve had this experience before, but mostly with my feet falling off of the footplates on my powerchair. That isn’t so bad, as I can tip forward enough to put my foot on the floor, even though I cannot lift it back onto the footplate any more. However, with my arm behind me, slightly twisted, a little painful and growing more so, a mantra of vulnerability began to speak itself, making itself known, rising out of my dis ease like an anthill in a cement crack, first scouting out the terrain and then exploding in lines fanning out in all directions and colonizing my thinking so I could not rationally figure out what I might do. And I will admit to you, I was frightened.

How routine dis ease can become until that moment when it is not, and therein lies vulnerability.

In an unremarkable month, the end of the season’s gray and grit with ashen skies rain or snow indecisive, when spring anticipation is clouded by winter’s harvest of friends and loved ones to death’s embrace; getting my arm caught behind me seems insignificant and small and minuscule. Yet such a tiny happening takes on power and importance beyond the event, and unbeknownst to me vulnerability lies in wait. Slowly, it burrows its way into my consciousness, secure without anxiety or concern that I might or might not traverse its paths, that I might or might not spiral into the traps it lays in this gritty, gray, ashen spring stubbornly clinging to its wintry womb so that the groans of its impending birth are only imagined pleasures. Patient, quiet, dangerous, vulnerability ambushes memories and susceptibility and grief, and I know its name with intimacy. And it knows mine.

Vulnerable. Adult.

I’ve heard the term “vulnerable adult” many times, mostly in the context of old people being conned out of their money or abused by caregivers or lacking the mental ability to defend themselves in any number of situations. And as much as I hate to admit it, I have always associated a certain amount of befuddlement with the label as if it was their fault. So the idea that such a moniker could be applied to me was so foreign, so alien, so out of my old normal perspective that even now its reality seems unbelievable, almost surreal. But this tiny event-a caught arm- interrupted my steady, unremarkable month; and the construct “vulnerable adult” emerged unfolding itself through  tendrils of consciousness blooming in the dragging of my feet, the leaden weight of my useless legs, tripping me up with little hints of air and sound, and calling my name in the same breath as its own.

Since ALS,it isn’t uncommon for old disability ideas to track me down and capture my imagination in themes laden with ignorance and negativity and fear and denial. With silent talons from above, they swoop in unforeseen, leaving me a little more stricken, a little more afraid, a little more frozen in disability myth until the sharpness sinks through my skin and lifts me from the terra firma of my able bodied arrogance, delivering a death blow to one more piece of immortal delusion.

Vulnerable is a term I never thought to apply to myself. It drips of a nonexistent control, of total dependency, of an old normal me rearing up and crying, “Not me, not me ever!” Vulnerable is a roadway littered more and more with dis ease as my capacity for its travel becomes less and less. My body will not be healed, and I cannot see the way home.

The old me would have strategized healing the vulnerability: Whip myself into shape so that no one, no way no how, would be able to see me as vulnerable. Intimidate the vulnerability, outwork others in the process so that they wouldn’t, couldn’t dare perceive any part of me as remotely, possibly vulnerable. But, even without dis ease, I was beginning to see the folly of these choices. After all, as a husband and father, musician, leader and teacher I had ample evidence of growth attained through hopeful and creative vulnerability. Yet, as is so often the case, even after my two plus years of ALS saga, I still return to the powerful grasp of a fearful old normal. And I still struggle to apply the gifts of dis ease in spite of my history.

Old habits die hard, and new spaces can be elusive. Vulnerability requires reframing.

Ten days ago, I had the great fortune of hearing the Bach B Minor Mass on the occasion of Bach’s 348th birthday. This particular work, the culmination of Bach’s choral writing, requires the commitment of a group like The National Lutheran Choir in order to pull it off with any kind of integrity. So, the privilege of hearing this piece in live performance was not lost on me. In order to prepare adequately I watched four hours of lecture by the renowned Bach scholar and conductor, Helmuth Rilling. While he is not the most scintillating of speakers, Rilling is a remarkable scholar, and his interpretations of Johann Sebastian Bach’s choral settings are both academically credible and musically imaginative. I had known how much Bach had borrowed from his previous works, but I was not aware of how conscious he was of going back to his best in order to move forward into what many scholars believe to be the halcyon composition of his career. And in this awareness, I realized the key to fully embracing my new found identity.

Like the B Minor Mass, ALS is my magnum opus. And like Bach, it makes sense to sample the best of my past in order to negotiate this certain yet uncertain future. I have enjoyed the fruits of vulnerability as ALS has progressed; friendships deepened, family love expanded, emotional – intellectual capacity developed. Without vulnerability, it would be impossible to perceive the subtle undercurrents of love’s music. Without vulnerability, the sweet breath of intimacy would lie fallow, row upon row of dust bowl dry plantings instead of fertile green growth. Without vulnerability, the beauty of the intellect, thoughts unimpeded by coarse understanding,would go undiscerned.

Without vulnerability, ALS would immediately kill me instead of escorting me home to eternity.

Matt Sanford reminds us that there are multiple stories of healing. Vulnerability is one such narrative, even when ants emerge through the concrete cracks. And I did eventually get my arm back in front, although there was no trumpet fanfare of seraphim, just a sigh of relief.

4:51

Let me preface this entry by saying that it has become more and more difficult to write the thoughts, feelings, observations that wheel and turn and fly inside me, not because of writer’s block, but as a result of the natural progression of ALS. My arms and hands are more and more affected, and the energy required to pay attention to something so personal, so intimate as the revelations that writing brings, often overwhelms the energy that I possess. This breaking body continues to slow, to diminish, to wind down into that meditative state where thought and music and the sound of my great grandmother’s clock’s ticking on the mantle defines the hours of a good day. I began this entry over ten days ago on December 29th at 4:51 AM, and I am just now coming to this place where coherence is a remote possibility. It has become more and more difficult.

At 4:51 AM, sleep is not easy or undervalued. On any given December 29th, the dust of Advent’s month-long anticipation has crumbled into eyes and ears and nose and throat as a childhood visit from the mythical saint collapses into adult understanding of how the world really works. It is time to wipe December’s dust from the house and get back to a life shorn of its tastefully lighted displays, it’s hoped for anointment of the chosen ones each of us is, versus the chosen ones we wish we could be. I need to kick off the dust from collective dreams and get going again, quit wasting precious time with false messiahs, get the rhinestone encrusted re-gifted refuse back to the brains that spawned their manufacture, find the direction that means something more than the animated fantasy and the commercialized shouting that seems to frame December’s silent nights. At 4:51 AM, sleep is replaced by lumps of coal wakefulness. At 4:51 AM, dis ease raises the great questions of time immemorial.

Dis ease brings diminishment, and diminishment brings contemplation and consideration–consideration of the present, the moment, the here, the now; and consideration of what lies ahead, the gifts of living and the gifts of dying. Dis ease inspires contemplation, even when the dis eased space seems skin numbing, energy sucking, apathy producing. Dis eased existence explores and considers endings, post-apocalyptic howls, heavenly hopes, hellish fears, the great void death indicated by musings and amusement and fantasy and religion. It is a mighty tale, and none of us gets out of it alive.

At 4:51 AM on December 29th, I am dis ease, and the great questions loom. I make my own forays into the here and after. I consider life and I contemplate death.

The frameworks of near death might apply to the questions of near life, at least that is what Proof of Heaven, Dr. Eben Alexander’s book describing his near-death experience says. And simultaneously, the musings of Christopher Hitchens upon his own impending death from esophageal cancer in his final essay collection Mortality, serves as a tome to empiricism. Each is a corrective to the non-empirical, non-triangulated narrative of the other. I consider each framework. I think and conclude and realize. Neither is adequate to living until I die.

At 4:51 AM, experience tells me to embrace the great beyond and reject the arrogance of descriptive certainty.

I have come to a point where I don’t trust any so called insider knowledge of the afterlife as definitive or perhaps even relevant. This is not to judge the truth or falseness of the claim. Rather, it is an acknowledgement that the claim to have seen the metaphysically unknowable, that which is beyond our own physical ability to fully comprehend, to have special insight into the nature of life after death, is more than a little disingenuous. In so many of these descriptive narrations, especially Alexander’s, there is an admission as to the inadequacy of the description because the experience is so indescribable, yet claims are stated with a tension that ranges from the purely charitable to the overtly profitable, and the profit makes me skeptical. And of course, there is no way to empirically check the accuracy of the descriptions.

But reading Christopher Hitchens’ reflections on his own 19 month journey with cancer, while it speaks a truth that I now experience, also denies the truth that sensory perception is incomplete. Hitchens actively documents the breakdown of his physical body, the fog of his chemotherapy, the very real and specific bodily harm his cancer wreaks upon him and all that love him. And of course, Hitchens is the consummate atheist. He reminds us often that he expects nothing except the experience that he currently knows. And Hitchens’ writing makes me think–if all we trust is our own empirical observations, then the deaf person must deny sound, and the blind person must deny color.

At 4:51 AM, on December 29th, the question is not as easy or defined as Hitchens’ realism or Alexander’s NDE capitalism, and ALS remains an overwhelming presence to be welcomed or denied, but never ignored.

ALS gifts its recipients with a remarkably different feel to the great questions. To circle and swoop and louver and spiral and wind down the physical body, limb by lung by language, is to wake up to songs and symphonies, dances and divinity. The gift of mortality is always edge of consciousness present, if not always consciously appreciated. And it doesn’t grant me or my brothers and sisters in ALS any special knowledge of eternity. Our limitations are the same as anyone else’s, mediated by imperfect intuitions, shaped by smell and taste and touch. Our seeing is no more acute, nor is our hearing sharpened by our physical loss. But dis ease draws your attention to mortality like a roughened place on a tooth that you cannot keep your tongue’s curiosity from worrying, like a song that will not leave your unconscious, like meanderings of sunbeams that cut through below zero temperatures reminding and remanding you to the presence of summers past and the summers yet to come.

The fact is that what is coming will come. Maybe Jesus will meet you, or maybe you are on the path to perfection in your next life. Maybe this is all there is. I don’t care about that so much. The fact is that we are granted this eye-blink of a life, and it is a question of living, and dying and living through. What is beyond this plane is beyond, but we are here, and there is a lot of living to do. It really does have to do with framing death with life instead of with questions that will clearly answer themselves when the time comes. Good living is in the knowledge that our near life responsibilities are framed by our dis eased near death experiences.

At least that is how it looks at 4:51 AM.

Sandy Hook

I was working on a blog entry, a tortured affair that was probably too much of something or other for its own good, when the shootings at Sandy Hook Elementary School took place. After the killing of so many children and their teachers, I just don’t have it in me to comment on anything but our collective dis ease. The primal feelings evoked by such evil is beyond anything I can adequately do justice to in a blog. If you were like me, the sight of our President struggling to hold his emotions in check, speaking the unspeakable, was a mirror of the anger-grief churning inside as the enormity of the tragedy was further revealed. And once again, I felt the despair that our human journey is at a crossroads where our intentions–beautiful and transcendent, compassionate and caring, loving and forgiving, intelligent and thoughtful–continue to retreat in confusion and horror from the enormous evil we can and will inflict upon one another.

Who needs ALS to speak dis ease when horribly afflicted men-children perpetrate such heinous acts? For me Sandy Hook is personal.

I love a woman who teaches music to little children. I gaze at her as our understanding of the full horror continues to unfold, and I realize that it was teachers like my Ev, locking down classrooms, telling the children they were loved so that if the killer came to them, love would still be their final moment, holding the horrific sights at bay for as long as they could, asking the children to close their eyes, to perhaps keep one last vestige of any innocence their five and six and seven and eight year old lives deserved. I cannot imagine the haunting, terrifying dreams these incredibly strong and caring and competent teachers, women, will know in the coming years. We now know that the six women killed did everything they could to stop the killer. They were brave, and they were professional, and they placed themselves between children and evil in an attempt to save them.

As a newly retired dean of a school of education, I cannot help but see the faces of the young pre-service teachers we prepared for teaching careers. For them, this is a life choice, not a stepping stone. It is a calling, a voice that says to them that a commitment to children is a far greater thing than the salary and esteem of another profession. Each of them will receive training, information, practice in how to mitigate horror if it should come knocking. And with that in mind, they will commit to creating a loving environment where all children learn. While not mutually exclusive, the skill and artistry required is enormous.

And let me share that there were a few times in my life as a principal where I felt my own safety threatened. Dawn Hochsprung was the principal of a K-4 school, and if you have seen her Twitter account, you see a principal who believed in projecting her entire being in support of her kids and teachers, underscoring their successes, bucking them up to the next challenge, urging them to see the joy in learning, defining her work with passion and love. I feel I know this remarkable woman for I have been privileged to work with so many like her, educators who skillfully bring teachers and kids and parents into a fold where school is opportunity after opportunity, an engaging world of wonder, a place where hard work is appreciated. She gave her life on a day when I am sure that the challenge of the upcoming holidays and keeping the kids somehow engaged was foremost on her mind. Not in her wildest dreams would she have predicted the terrible events to transpire and what would be required of her.

The faith required of parents to trust the safety of their schools cannot help but be tested. To send your six year old off to school on a Friday, to never see her alive again would crush your soul. Anyone who is a parent knows the normal safety fears that we carry for our children. The loss of so many children is so unfathomable, so overwhelming, so undefinable, so wrong, so wrong. My sons are grown, and I still fear for them and their lovely women. To lose your young child in such horrible circumstances would be harder than anything. I cannot help it. The grief swirls through my soul.

I cannot leave the above without considering some very preliminary thoughts about what we should do. I am sure others will have far better ideas than me, but here is a beginning.

Remember the saying, “Guns don’t kill people, people do?” Let’s agree with the point and start a discussion about responsibility. When do we begin to take responsibility for the fact that there is no meaningful way to intervene on behalf of an “adult” with serious mental health issues that could lead to violence? I recognize the possibility of abuse here, but common sense and logic would lead us to conclude that there must be better ways. An 18-20 year old, troubled to the point of homicide, is not going to seek out help on his own. We need better ways to provide meaningful interventions.

The temptation will be to forget, to find ease in the blessed amnesia of denial. We will find ourselves wanting to blame, to marginalize, to distance ourselves from the perpetrator and the illness he manifested. We will never find resolution this way. It is time we embrace the reality that the mix of guns and mental illness is too complex for a single, once and for all solution. It is immature to think otherwise. We need dialogue about mental illness that is decidedly different. The ease of collective amnesia will only allow more and more manifestation of such events as Sandy Hook. We need the adults to show up.

And in the name of responsibility, whether you like it or not, we need an educator’s sense of propriety. That means we don’t get to marginalize others due to their challenges. They are our children, and we need to take responsibility for them, not distance ourselves as if it couldn’t happen to us. This means that all our children need us to claim them, not just the easy ones. Educators do not get to be selective, and neither should our society at large.

Only when we have this dialogue on mental health, can we begin to have a meaningful discussion about guns.

It will be tempting to go after the gun laws. For whatever reason, Americans own so many guns that the effect can only be cosmetic. I am not saying that we should not talk about what we want gun laws to do, but as an old dyed in the wool liberal, I already know it will be a lot of energy expended for little return. Gun ownership is legitimated by our laws. The estimate is that there are over 300 million guns in the US. The horse is out of the barn. But, we can certainly have much more meaningful requirements for owning a gun.

A Honda Civic can also be a lethal weapon in the wrong hands. Why don’t we require licenses for everyone, much like we do for driving, with background checks, and periodic refresher courses and checkups on safe storage and whether one still meets the licensing requirements of gun ownership? I am an adult with disabilities that preclude my driving safely. Just as my eligibility for a drivers license should be reevaluated against my ability, so too should we ask the same of gun owners.

And everyone–buyers and sellers–needs to meet the standards over and over again.

Finally, we need to recognize that many of the best solutions to guns and mental illness will be local. What works in Wyoming might not work in Minneapolis, and vice versa. This also means we need ongoing dialogue, constantly holding ourselves responsible to work the tensions between safety and security, individual freedom and social responsibility.

My heart is broken by the events in Newtown. I take this so personally as a teacher, a principal, a preparer of new teachers and principals, a father, a citizen. Platitudes will not help, and the only inappropriate response is to not engage in the dialogue with respect and truthfulness.

I will return to my blog next week with a seasonal thought, but today, I hug my wife and sons and daughters-in-law a little more tightly and thank God they are here and safe.

Eventuality

In so many ways, it has been an “aha” week for me. As I complete my first month-and-a-little, post-work challenge, the struggle to find a rhythm, a personal harmonic in synchronous vibration with my disability’s fundamental tone—defined by dressing for ease and not for the job, more and more intimacy with personal care assistants, lunches with friends, longer naps than I ever thought possible, the need for more and more physical support–has been the true north of my journey. I say true north as my direction seems to have veered from the magnetic attraction of the destination, toward what is a much more real, more dis ease accommodating journey.

We humans love to describe life with the journey metaphor. And why not? The path is clear; birth, childhood, adolescence, adulthood, work, relational commitment, parenthood for some, empty nest, maybe grandparenthood, retirement, agedness, and off we go into the light. I may not have named all of the points or their exact order, but the birth – death existence is quite a trip, and one that we all face. The uniqueness of the journey is in the dash between our date of birth and eventual death. Each significant occasion that marks our lives, seemingly unique to us, can be generalized in broad paintbrush strokes to humanity’s experience. And each occasion is an opportunity for growth or calcification.

Life growth and death brittleness come in many guises. Each of us might know growth through our partners, our relationships, our families. But we might just as easily experience the ravages of a relationship gone bad or a partner without commitment. How many of us know the pain of family dynamics framed by substance abuse or addiction? Each of us can hope for health in our lives, but we also know with certainty that what lies ahead will be marked by dis ease through manner of ways the human body goes wrong. We hope for good jobs and are aware of the tenuous nature of employment. The journey is not easy or sequential. For some, it looks like a straight path while for others, life is defined by events that are out of our control, clear leaps and bounds from event to event. Thus while the dash looks like a straight line from birth to death, life’s eventualities belie the look.

I know that you know this. I am just saying it for me.

This week, I found a bit of peace. It came through a slight reframing, a deeper spiritual understanding of my own journey line toward the death that awaits me a whisper of time from now. And I realized that the core idea with which I left my working life, consisting of a list of things to do, accomplishments to be checked off day to day and week to week, was silly. I am not retiring at the age of 65 with a hope of 20 years ahead of me for travel and all of the things I haven’t done. I have not reached a pinnacle in my professional life that feels worthy of celebration and satisfaction. Ev and I will not be selling the home and moving to a desert island. Nor will I be devoting my leadership experience to serving on the board of some meaningful nonprofit. I’m not going to start training to compete in the 70 and older bracket of the Ironman. “My hands are tied, my body bruised, she’s got me with nothing to live for, and nothing left to lose;” Bono’s religious romantic tome to existence pretty well sums it up. It is harder and harder to communicate through my hands, my ALSFRS is down, I cannot bathe or dress myself, eating requires assistance, I tire easily. What was I thinking?

Sometimes, epiphanies are so quiet they scream.

None of us is granted such prescience as to know the exact moment of our ending until the moment happens. And there is my “aha.” I truly do not know how much time is left me in this wonderful life. I do know that I will die eventually. The epiphany moves me from a peace that waxes and wanes in its ALSness to a peace that waxes more and wanes a little less in its utter humanness. My problem has not been with an impossible concept of retirement, but more with the feelings of loss and grief at the lack of such possibility.

My problem has been me.

What I am trying to do, what this new realization seeks to teach me, is to recognize inevitable frameworks of eschatology. Tom Waits said it when he paraphrased the early Christian church, “Jesus gonna be here, He’s gonna be here soon.” It is not my place anymore to plan for an existence beyond the day, the hour, the very second of breath and life. Rather, it is enough to seek a good day no matter what.

Why didn’t I figure this out earlier?

One of the more interesting concepts to come out of late 19th and early 20th century anthropology is the so-called “cargo cult.” A cargo cult in its classic sense is when a pre-industrial population becomes aware of the availability of goods and services associated with industrial manufacturing societies, and seeks to attract those goods without the manufacturing culture required to make them. Often, this would be manifest in rituals such as building airstrips or docks even though the society owned no planes or seafaring ships. The cargo cult is useful for explaining some of the more bizarre behaviors we observe in the zigzag line of human existence. In an effort to bring the goods home, we come to believe that we can construct a plan for everything, accounting for every variable, smushing in every single experience that we think we deserve, usually within some ritual that becomes less and less tied to the actual facts our lives exhibit.

All my life, I have been waiting for the cargo.

It seems that no matter how clear the lesson, I still try to build my life like a runway to attract perfection, to exercise control in a way that results in the plane landing with all of the straight line journey items I could desire. You can name the journey as you like, but for me, it was leaving behind me the negatives, the things that didn’t work, the imperfections, the losses, by exercising the rituals of retirement so that the cargo would arrive.

This week I realized that I “retired” at the age of 85, not 65. That changes things. This week, I stopped waiting for the cargo to show up. This week, the steady progression of ALS, point after point, and the obvious tasks that are now beyond me, illuminated this new understanding. It is enough to have a good day, hour, minute, second. Therein is the rhythm I sought, the harmonic I needed.

And eventually the cargo actually arrives, and the journey ends with the perfect harmonic and a compelling rhythm wrapped up in melodic wonder.

What Do You Do?

This is my first week of freedom from the work activities so at odds with my waning physical capacity, and I find myself answering more often than I would have guessed the question, “So, what do you do with yourself all day?”

This new normal of not working requires a settling period where the rhythms and tempi of dis ease can play out in quest of finding wholeness with what I can do, what is within my physical scope. I planned for this time as one plans the books to carry on a six month ocean cruise–sweet reads and thrillers and intellect and poetry and at least one book I should have finished years ago, War and Peace comes to mind. These reading lists are never complete, never adequate, often well intentioned, and in the throes of the vacation (technically I am on vacation until the end of the month), they are realizations of the accuracy of predictions for the time you have on your hands. Such is the new way of dis ease and its minion ALS, and frankly, I do not feel their gratefulness for embracing this new routine.

So, what do I do with myself all day?

I have planned for this time with a sense of purpose, much like I would plan one of our many travel forays in the near and far history of Bruce and Ev and fam. My experience is that travel is best when it is both deliberate and open to the reality of the destination. Beyond the breathless descriptions of the travel books and websites, travel is a dish best served with plenty of acknowledgment of just how little control we actually exercise when we leave familiar confines, especially in a place never experienced before. In my former life of working, I could plan because the work had such a familiar smell, taste, feel to me, and when control of that existence got away, I always knew where and how to restore the stasis needed to remain on an even keel. What I did not realize about this new normal in which I now find myself was that stasis would be the norm, and creative disruptions must almost be planned.

Before you decide I need to be surprised by something wholly spontaneous like randomly appearing clowns or the sudden sighting of balloon people, let me explain this planned disruption a little further. The creative force in my worklife was almost always the result of tension between what I knew and the unknown that existed outside the collective experiences of me and my team. As one who sought to pay attention to the complex balance of standard operating procedures and novel challenges I found the moral imagination required just to maintain stasis to be breathtaking, and I learned early on that it was important to be open to the reality that the standard operations in place were probably inadequate to the challenges at hand. In short, I learned that no matter how well you plan for the upcoming moment, there must be some space reserved for the fact that there will be significant differences between the moment as planned and the moment as experienced, and thus the need for systemic creativity and focus, whether it was a musical group or a college, was paramount.

One of the sweet, quasi planned-fors of this new post-work existence is lunch with friends. This week, I have had lunch four out of five days with loved ones, each with their own interests and joys and yes, the sustenance that I cannot furnish for myself. I cannot begin to tell you what this has meant to me. Each brings food and conversation, focus and the outside to a day that could easily degenerate into questions of worth–self, life, death. I have enjoyed this mid-day time immensely, more than I thought I would, given the dual meaning of my needs. My friends are so pleasant, and there is nothing so healing to the soul as food prepared or brought by another. And of course the meal radiates both the warmth of nourishment shared and the continued progress of a body winding its way to nothingness. We have forewarned all with a portent of things to come–“Please note that his hands are weaker so foods such as soups may require more assistance for him to eat.” Translation–this isn’t just about fixing him food. You might have to feed him soon–nudge, nudge, wink, wink. And so the days take on a rhythm that orbits around the golden mean of such dichotomous meaning.

So now, I experience my old normal leadership phenomena, only inverted and inside out. The purpose perceived from the planning side of the road looks a lot simpler than the purpose perceived after making the crossing. Like the difference between the map representation and the actual winding dirt ribbon that disappears into the distant hills, the journey only partially resembles the once predicted pathway. There are the inevitable bumps and gravel and potholes and detours, but it is the roar of threatening monotony, days too predictable, the sound of routine’s footsteps that haunt me. While I really hope this goes according to plan, it cannot be the lockstep, inflexible agenda one gets with booking a bus tour to “see” all the major sites of a city from the gawking safety of a comfortable seat, window in between, in three hours or less. Such a tour is maddeningly predictable and mindfully dulling.

And I admit, my new normal has some of that bus-tour flavor. It is easy to get up and let the time between my PCA’s departure and my friends’ lunchtime arrival whiz by in the windowed confines of my lovely space. Without moving, the outdoors is a blur of activity beyond my investigative ability. It is chilling, soporific and it blunts the intellect. And when all else fails, I nap profusely, accomplishing the work of winding down little by little, sleep to sleep to sleep.

In this new space, the disruptions for imagination and creativity, for meaning, for the very real work of living with keen awareness of my mortality, must out of eternal necessity, come from within. There is nothing out there that holds the same power or significance as the inside work I hope to do. I now fully understand why my grandmother said to me three weeks before her death, “I don’t want you to send me anything anymore.” And while I do not plan to die in three weeks, the material items of this plain of existence have been remarkably diminished in worth, and the only thing that has value for me that I feel has any relationship to wherever it is that the next destination takes me, is the love of friends and family, my one true love, as it has always been. If my arms could rise to the embrace, if my mouth could kiss this all away, if my tears could cleanse the doubt and physical memory where humiliation and regret live, if you could know how much, oh how much I love and feel and laugh and weep this new life; then, then what? It is almost on cue, the orchestrated life with chords dripping irony and quiet realization.

What do you do with yourself all day? I eat lunch with friends who don’t seem to mind my strengthening weakness. What do you do?