Just One More Time

Not that the phenomenon is unique, but in Minnesota you can bet that you have been fully assimilated into the culture when you participate in the “Minnesota Goodbye,”a highly ritualized, almost liturgical set of behaviors. The Minnesota Goodbye is a cultural artifact with its probable roots deeply held in the Germanic, Scandinavian, Southeast Asian and sub-Saharan African populations, not to mention the Irish and the English, that so richly spice our little corner of these United States. Combine cultural roots with a weather pattern that does not encourage going outside for at least six months of the calendar year, and you can probably begin to understand how the Minnesota Goodbye became the well-developed ritual that it is, and why it has taken on an almost religious function in our social practice here on the frozen tundra.

The Minnesota Goodbye occurs when visitors indicate they are ready to go. The host carefully walks them to the door where host and guests stand and chat as if the evening is young and they have not been together for the past three or four hours. Often, the most important exchange of information at a social occasion takes place during the Minnesota Goodbye, for it is in this space where host and guest are assured of one on one time together. Frequently punctuated by the phrase, “let me say just one more thing and then we will call it a night,” the Minnesota Goodbye has been known to last for upwards and beyond an hour in length and for those who are not accustomed to its rituals, it can seem almost irritating in the breadth of its timing and depth of its sharing. Those of us who are not native to Minnesota find ourselves asking why we did not engage in such conversation during the evening’s socializing, or at least why we held such an important discussion until we were at the door. When I first came to Minnesota, I found myself asking such questions (not to my guests of course) of myself and my wife. But eventually as we shed our otherworldliness and cloaked ourselves in the cultural mores of Minnesotans, we became accustomed to the rituals associated with leaving, and now participating in the Minnesota Goodbye seems so normal that to not participate in its rituals would leave us feeling empty, as if our visits were superficial. And we have come to appreciate the Minnesota Goodbye for its utility in ensuring that what must be communicated between good friends is actually shared, that what should be said does not remain unspoken, that a silent chasm between good friends cannot exist. The Minnesota Goodbye is an assurance that just one more thing cannot be left out of the evening’s visit or the joy that comes with friendship’s deep communication.

Medical practice can be very much like the Minnesota Goodbye.

No doctor wishes to leave any stone unturned in the treatment of her patients. Good doctors especially want to make sure that they have considered all relevant variables and possibilities as they construct a recommendation for appropriate treatment. It is the medical version of the Minnesota Goodbye so that just one more thing is often the rule and not the exception. Just one more thing has tremendous ramifications for patients. In the moment of medical crisis it can offer reassurance that all possibilities will be considered. Conversely, in the moment of deep peace, just one more thing can create disruption where it may not be necessary.

I know this firsthand.

My treatment up to this point is framed by the need for managing the ever increasing demands of my symptoms, even as they become more and more difficult to manage. For example, in July, I began to experience difficulties in swallowing. With the help of my neurologist, I worked through the pros and cons of having a feeding tube placed, in case swallowing became so difficult that I would not be able to eat. At that time, I decided that the risks associated with the operation – sedation, being in a hospital, possible side effects of a surgical procedure no matter how simple a surgeon felt it to be – far outweighed the possible good of the feeding tube, and thus I determined that the placement of a feeding tube was not an appropriate treatment for me at the time.

A number of my friends and doctors, extremely well-meaning in their probity, have asked me the question, “Why did you not place a feeding tube early on in your progression?” It is a good question and probably more indicative of what we have learned about ALS in the four years since my diagnosis than on any strong personal feelings about feeding tubes. When I was diagnosed, the focus question was on whether to place a feeding tube or not. Now, many neurologists who treat ALS are more focused on the question of whether one would like to keep their nutrition up for as long as possible, citing the fact that weight loss is highly correlated with lack of survival. Upon receiving an affirmative answer to the question of nutrition, only then do they introduce the question of the feeding tube. It isn’t so much that we didn’t know the importance of nutrition, but the fact is that four years ago, the medical approach focused more on the question of a feeding tube almost as if it was separate from the question of nutrition. Since I had experienced no difficulty swallowing, even up through January of this year, I did not wish to submit to one more procedure that would require care and attention by another person when it seemed that it was unnecessary. Hence, up until July when I was able to swallow without any concern, the placement seemed superfluous, and after July when I was able to analyze the inherent risks, my decision remained firm.

I have likened ALS to a train on the tracks, seemingly in slow motion, unable to veer left or right, coming straight at me as I am stalled in this body and am unable to leave the rails.I am highly aware that with ALS, the final cause of death will probably be a combination of lack of nutrition due to eating difficulties and the buildup of carbon dioxide due to breathing difficulties, more likely the effects of the latter. At this point in time when I need to see my respiratory therapist once a month to bump up the BiPAP’s airflow and exhalation, when I need to see my hospice nurse once a week just to bump up my symptom management, when the conversations that Ev and I have are liberally salted with discussion of just how we desire the end to go, I am at peace with the life I have been given, accepting of the death with which I am gifted, and grateful for every day that I still awaken. It is a good space for a person to spend their final months. And I think that my physicians, my healers, my beloved doctors and nurses and therapists are okay with me being in this privileged space.

And in this carefully constructed space, where we are at peace, just one more thing knocked on our door and turned our world upside down just one more time.

The best doctors leave no stone unturned. A dear friend of mine, a neurologist and expert, suggested I look at an alternative way to place a feeding tube. The logic was impeccable. Why should you have to spend so much energy and time on eating when the quality of your meal time could be focused on taste while nutrition could be taken through a feeding tube? And I had to admit that such a possibility actually sounded pretty good. We discussed a procedure that could be done with me awake and on BiPAP during the entire time. Yes, it would mean I would have to give up my Do Not Resuscitate and Do Not Intubate orders, for what surgeon would want to operate under such circumstances, but the idea of spending less physical time and especially less psychological time on eating was appealing. And, as I played out the possibilities with my family, I thoughts that I could see them lighting up with hope that such a procedure might result in longer survival, a better quality of life. But as I considered the downside to the operation, I had to be honest that with the intubation might come the need to utilize invasive ventilation, something that early on I decided I did not want to consider for my treatment. So, another way to look at this would be higher quality of life versus dying during the operation or a day or two after due to other complications.

I know that these decisions are extremely personal, and that what seems to fit the type of life that I wish to lead could be totally inappropriate for another facing the exact same decisions. I only share this to illustrate how easy just one more thing can suddenly raise itself into your world, your consciousness, your deep analysis and consideration. And that is exactly what happened. The relative peace and calm that we had worked so hard to establish was suddenly disrupted, turned on its ear. and everything that I had imagined as to what constituted a good death was thrown up into the air as I considered the procedure.

Here is the point. Whether you think such disruptions are for the better or worse, the fact is that even when you believe everything is worked out, it is not. And the process of my working through the feeding tube decision required consultation with two different neurologists, two different nurses, a trusted friend at the ALS Association, both of my sons and my beloved wife, and finally our hospice providers. And even though I perceived a hopeful outcome, the 10 days spent in attempting to make a well considered decision also raised feelings of disruption, resentment, irrational hope, and even despair for my family and friends, for me especially, as all of us considered the ramifications of the decision that had presented itself like a Minnesota Goodbye careening out of control.

And what finally led me to decide not to do the procedure? Two different pieces of information surfaced from my two dear neurologists – one was that even if the procedure worked it would not in most probability, lengthen my life; two was that this particular type of feeding tube was susceptible to needing replacement more often than I would probably find acceptable. But the piece of information that really cinched the decision was this: I would have to go off hospice. As I considered the ramifications, I realized how dependent we had become on our hospice care providers for the stability of schedule and environment that they gave us. We had established meaningful routines again, we knew who to call and for what, and we really liked the people with whom we were working as they seemed to understand our goals for peace and dignity and joy in the end. And in the end, it was the possibility of losing the human qualities that hospice had brought to this complicated process of dying, that led us to utterly and completely reject both the hopeful possibilities and the frightening counter indications of placing a feeding tube.

Please understand that there is no blame or bad feeling here. I just think it is highly illustrative of how easy the turn of one more stone can shift the foundation of the carefully constructed life. When you are dying, that careful construction is remarkably helpful. And while it is always good to consider the treatment possibilities that do exist, it is just as important to consider how such treatments can disrupt and affect quality of life. Consider how so many of my brothers and sisters in ALS reach beyond their own capacity for something, anything that might offer them a little more life. This extremely human desire makes all of us susceptible to the seduction that comes with the medical version of just one more thing. Who can blame us? So many are young with so much possibility ahead, cruelly robbed by ALS, so that the idea of just one more thing is very seductive. But if you stop and think about it, this susceptibility is more a statement of the value we place on the unknown future, than the gratitude we feel for a past well lived. I know people in their eighties who are having difficulty negotiating their impending deaths. Just one more thing appeals highly two and a irrational future when you cannot find peace with the inevitable present.

Yet, as right and good as I feel with the decisions I have made, with the space I am given as I wend my way toward death, I can still feel the pull of the Minnesota Goodbye. To remain in this peaceful, beautiful space, requires a concentrated effort, a projection of gratitude and acceptance, and the conscious receipt of a peace that passes all understanding. I have come to the point where just one more thing is fine for executing the ritual of the Minnesota Goodbye, but for realizing a life well lived,  just one more thing interrupts the stream of conscious love I am becoming, as I tumble into the river where all life finally ends and continues to its source.

And if I change my mind, I’ll make sure I tell you as we walk toward the door and bid each other adieu.

What have you done for me lately?

When I was a full-time choral musician, I noticed a post production phenomenon that would occur after completing a performance, say a musical or a concert or a major work for example. People would congratulate us for our accomplishment. Full of praise and ebullience for what we had just done, they would offer kind words, compliments, appreciation for the hard work and level of performance we had realized. And then, invariably they would ask, “What have you got planned next?” Needless to say, such a question was almost always a mood killer. No basking in the limelight for us, no enjoyment of the moment in which we had pulled off a wonderful performance, the question of what was planned next always loomed in our musician psyches. I came to call this phenomenon, the “What have you done for me lately?” phenomenon, and I believe most  music performers would recognize the feeling.

What have you done for me lately?

In our Western way of thinking, we tend to believe that the sum total of our lives earns us a good death, and hopefully an even better afterlife. In the movie, Saving Private Ryan, the older version of Private Ryan requests of his family, “Tell me that I am a good man.” Standing before the grave of Captain Miller, the man who gave up his own life so that Ryan could return home from fighting in World War II, he falls on his knees and pleads with his family, “Tell me that I am a good man.” And because it is a movie, we are privy to the event over 50 years ago that leads to Ryan’s emotional outburst. As Miller is dying from wounds sustained in defending the younger man, he reaches up to the young Ryan, grasping him fiercely and hissing to him through clenched teeth, “Earn this, earn this!” It is a Western tale illustrative of just how much we connect the concept of merit and a good life. It assumes that we can earn the death of another through the life that we choose to lead, that such merit is equal to another’s death as long as we realize a life of goodness.

And we are not the only ones.

In Theravada Buddhism, one of the strong meta-narratives that shapes religious and cultural belief is that what happens in this life determines (one might even say earns) our next life as we traverse the eons, growing either toward Hell or Nirvana. In Thailand, there is a saying (please excuse the transliteration all my Thai speaking friends), “Chewit nii, Chewit naa,” which roughly means that what you do in this life will determine your next life. And of course, the concept of making merit is extremely important to a Buddhist way of life. In  essence, the Theravada  Buddhist  narrative suggests that the life we are living today is one that we have earned through past life, and what we do in the present will determine the future life to come.

In many ways this is an Eastern version of “What have you done for me lately?”

So many of you responded with such kindness to my last blog, particularly to the musings about whether or not the love that I have carried, held, felt for my family, my friends, my loves would be remembered after I am gone. Some of you almost scoffed, wondering what was wrong with me that I would even allow such thoughts to exist. Others sought to reassure me that I did not need to explore such questions. A few of you wondered if I was on a fishing expedition. All of these are appropriate responses, but they belie the fact that such musings are not idle speculation or questioning.

As one looks toward the last days, it is mete and right, normal and natural to question the meaning of one’s life, the impact that you have had, the joy and grief that you leave behind. Even Jesus questioned the whirlwind that brought his life to a close and ended his ministry on earth. I have never met a dying person who did not question the meaning of their own lives, and of course as I sought to comfort them, my own answers reflected the same responses that so many of you gave to me. There just isn’t any way around it. I suspect that in my final months, I will continue to raise these questions for precisely the reasons many of you suggested that I need not ask.

As I continue the ever smaller orbit of my mission on earth, I cannot help but notice how uncanny are the parallels between musical performance, life merit no matter the culture, and the preparation required for death’s ultimate recital.

In music, even when I felt I had completely prepared myself and my groups, even when I knew I could be confident in the performance we would give, there was always a nagging feeling that we might have done more, that we could have been better as we faced our moment of truth. And while I learned to enjoy the moment of performance as the apex of the musical experience, there was always a sense of letdown after it was over, a questioning of what could have been done better, of decisions made that resulted in the level of performance we had accomplished. Looking forward to the next performance and the next, it is no wonder that the question of what have you done for me lately emerged.

I guess what I’m trying to say is that my whining questions in the last blog are natural and normal for any human being, but especially for one in his last months of life. It is normal to look back and question the goodness and meaning of the life that we have lived. It is normal to be less than trusting in the idea that we have done all we can for those that we love, for whom we feel great responsibility. And it is absolutely normal to question how we have affected those whom we have loved in this lifetime as our lives end, and they move forward into a life without us.

When I first started blogging, it was my hope that as I wrote honestly about my experiences, it would be helpful – helpful to me in trying to analyze the meaning of ALS in my life, and helpful to others as they faced major challenges in their own lives. Now, as I face the end game, I don’t want to start withholding information, questions, musings, thoughts and feelings and connections from you or myself. The question of life merit, whether you think it appropriate or not, weighs heavily upon my soul. I make no apologies for I believe the question is highly appropriate when one is in close proximity to death. To be transparent and truthful, I feel that I must share the questions as they arise, no matter how logical or irrational they may seem.

After all, it is part of the rehearsal, the preparation for the performance, the technical realization and the affective embrace of a life well lived or otherwise. It is an ethic of honest analysis, an aesthetic frame of reference that shines crystaline light on the good and bad, the ugly and the beautiful. And I come by it honestly.

It is just another way to ask myself what I might have done…, lately.

The Elephant 2.0

I live in a condo where every available space is maximized. When your life is framed by dis ease, you need lots of area to turn around, to fall and get up, to receive uninvited guests and invited love. When your life is framed by dis ease, unless you consciously take charge of the chaos, there are spirits climbing on the walls, unseen by all except you, the floor is a constant jumble – uneven and rolling like the hills of southern Indiana, yet only perceptible to you. When your life is framed by dis ease, the decisions about what you can handle, what you can take, what adds meaning and what subtracts life force take on significance that makes the day to day existence of ALS seem like a vacation. Such decisions are elephants in the room, invisible and waiting for someone to grant them permission to become visible, to acknowledge their presence, to speak their truths no matter how painful. Elephants almost always appear when suffering is present, and I am to blame for the elephants I can see. By not blogging for the past four months, there are so many elephants that have wheedled and cajoled, quietly appeared or loudly announced their presence, that they have taken over every room, every seat, every open space, and I cannot help but be overwhelmed by their sheer number.

Not since my diagnosis have I gone this long without blogging.

I have been very busy writing, and our book, We Know How This Ends, is in its final stages before production. But I have to admit that in paying attention to the larger picture painted by writing a book, submitting, resubmitting, and resubmitting again drafts for editing, my viewpoint has out of necessity been at the 30,000 foot level. From up here, you can see all of the elephants, but the details are not specific. It isn’t a bad place to hang out, but it does not lend itself well to the daily processing that dis ease demands, especially if you are trying to stay in that space between grief and fear, pleasant memory and the anguished unknown, past meaning and future possibility. And, in spite of the incredible support of my co-author Cathy Wurzer, the many small yet largely significant physical changes I have gone through in the past four months are piled up on my lack of interpretation, leaving me much more susceptible to tortured feelings and harmful vulnerability. Really, you think I write to you to keep you informed? I am much more selfish than that.

I need the therapy of blogging; there are elephants in the room.

In early July, I began using BiPAP for breathing support. BiPAP is a more active version of the CPAP that many people use for sleep apnea. I must have been starved for air, because within 10 days I was using BiPAP almost 24/ 7. There are two ways to use this machine. It has its own stand and a humidity element that keeps the air warm and moist as I breathe. This is my preferred manner for using BiPAP. You can imagine that if you had wind blowing up your nostrils, your poor little nose would get sore both outside and in. The humidity helps but isn’t quite enough. My BiPAP machine is also on batteries that can be tied into my wheelchair. This allows me to make transfers or to leave the condo with the BiPAP machine functioning sans humidity. It is OK for a little while, and it keeps me from having breathing events when I transfer from one place to another.

With a long BiPAP hose hanging from my face, I joke with my friends that I am the proverbial elephant in the room, and unbeknownst to them, I am.

The air hose that comes off the machine enters through nasal pillows held by a head strap against my nose. The advantage of using the nasal pillow interface is that I can talk. Other ALS friends of mine that use a full face mask cannot talk with their masks on. But thankfully for me, and probably not so thankfully for my friends, I am able to speak while wearing my BiPAP mask. Unfortunately, BiPAP makes me sound like I have a terrible head cold. Words like “nine” come out as “died,”and “mom” comes out as “Bob.”  I tell my friends that just as I need to concentrate on my pronunciation, they have to put on their BiPAP ears so that we can communicate with some semblance of understanding.

Like any good elephant, I ask people who have not seen me on BiPAP before, if they think it makes me look fat.

At first, I tried to use the BiPAP with my diaphragmatic pacing system. Unfortunately, the DPS is slightly out of sync with the BiPAP. Thus, I was required to try to consciously synchronize the kick of the DPS with the breath of the BiPAP, and for a while, I was able to do it. However, over time my strength to control the synchronization has waned and the DPS has become quite painful, so I no longer use it. I have to admit that I feel a little bit guilty about that. But then I remind myself that in reality, the DPS for ALS is a clinical trial, and until we gain a great deal more evidence that can be meta-analyzed, we just will not have the requisite knowledge for best use and application. I have learned the hard way that one of the great challenges for treating ALS is that everything is on the front lines of knowledge. Just when we think we have figured something out, new knowledge emerges that ironically enhances what we already know while at the same time putting us back to square one in what we understand.

If you listen carefully, you can hear another elephant trumpeting its song in my dis ease life.

The minute I remove the BiPAP mask, my voice becomes so soft that it is barely discernible. The amount of air that I can move through my system without mechanical support is miniscule at best. I am literally out of breath without this machine. Not having the strength to synchronize the DPS and the BiPAP, barely moving any air in and out without support, and other losses are all indicative of dis ease and its handmaiden ALS, especially in terms of where things are in the elegant progression of this remarkable disease. From here on out, life is only too short for me.

So many elephants, so little time.

The greatest elephant in the room is the worry I carry about what happens to my beloved family and my loving friends after I am gone. I know full well that they will keep on keeping on, that their lives will be joyful, and that the sadness that we feel together now will dissipate into a lovely longing for days gone by. But I cannot help but worry. What if all that I have learned and sought to pass on is for naught? What if they forget how to remember my love for them? I know these are small concerns considering all of the adjustments ahead of them. I just want them to deeply know how much I love them and how much my life was bettered by being in their presence. I want them to know how healthy I feel in spite of ALS. I want them to know that because of them, I knew grace.

And in spite of the visual evidence, nose extension and quiet voice, the grace that I feel is the real elephant in the room, gently waiting to take me home.

Falling 3.0

A couple of years ago, I wrote about the psychological and physical effects of falling. At the time, I had fallen a number of times due to leg weakness. Indeed, it was falling that convinced me, pre-ALS, to see a neurologist. Back then, I related how falling made me feel afraid, timid, less confident in my body. Over time, I mitigated the effects of falling by moving to more and more supportive and purpose built medical equipment including the power wheelchair in which I now spend the majority of my days. And I also sought to psychologically change the meaning of falling by associating it with the adventure of skydiving – the experience of falling out of a perfectly good airplane on two separate occasions.

Of the two effects, the physical are pretty straightforward. There are scrapes, cuts, bruises, and depending on the circumstances, broken bones. Luckily, my experience with falling has always been limited to the lesser physical effects. I have never broken anything, my pride notwithstanding, and anything that was physically affected required only a short amount of time before I felt it whole again. The interesting part of the physical is that for a few days or even weeks, it is there to remind you of just what can happen when you fall, the touch upon a forgotten place, the breath that stops at sharp pain, the scab present in the mirror and not even felt. The physical effects take place and if they are not too serious, begin to fade. That is not the case with the psychological effects.

I have always found the psychological to be more profound. After any fall, there is a psychological chaos that goes on both inside your head and your body. Breath feels shaky. Confidence has been disrupted, and presence is compromised. The mind is dulled by the experience, leaving one grasping for words and feeling at odds with one’s assumptions about the physical world, how things work, your relationship to the broader environment at large. For me the psychological bruising is a phenomenon from which it is far more difficult to recover than the physical. Given all of this, I thought I had taken enough control of my environment to put falling into the category of been there, done that.

Imagine my surprise, my shock, to experience the most significant fall I have yet to experience this past week.

Power wheelchairs are very technical machines. From time to time, it is important to change the settings, update the structures, and adjust the mechanicals. This can take anywhere from an hour to four hours or longer. My favorite wheelchair guy is Scott, a man who understands what it means to be in a wheelchair himself, having used one for the past 33 years. He knows a lot of tricks, how to avoid sores, and ways to make the wheelchair more comfortable. What I really like about him is when he is stumped, he turns to his very knowledgeable colleagues and they all put their heads together and come up with a solution. He is really quite remarkable, for he of all people knows that the space for people in wheelchairs between getting to where they want to go and disaster can easily be mere millimeters.

After my last visit to Mayo, we determined that I needed to get my chair adjusted, and I made an appointment with Scott with the understanding that it was going to be longer than usual. Wheelchair adjustment is highly individualized – what works for one person might result in pain for another. It is much more of an art than a science or technical skill, and the amount of trial and error required for this particular appointment kept me there for four hours. I was pretty blitzed by the end, but feeling confident that we had made the right changes I felt ready to take on the world again from the purview of my chair. A little after 5 o’clock Scott and I rolled to the front door of the darkened building, and he said goodbye. I rolled out the door, turned right, headed for the van and without meaning to, got too close to a curb.

To use a hackneyed cliché, what happened next was like a slow-motion movie to which I already knew the ending.

I knew I was in trouble when the wheelchair started to rock. I tried to kill the power to it immediately, but I couldn’t make the switch work. I saw myself rock right, then left, then farther right and completely over, my 190 kg wheelchair landing on top of me, pinning my elbow behind me and pushing my head and face into the pavement. Luckily I was wearing a neck brace, or I might have broken my neck. Unluckily, I was wearing a neck brace which pushed into my neck and chest so that each breath seemed slightly smaller.

It was a confluence of errors. Ev tried to stop me, an impossibility. Her phone was out of juice, and I wasn’t carrying mine. The wheelchair place was closed with no lights on. And its location is an industrial park where very little traffic is likely to pass after 5 o’clock in the afternoon. I remember thinking, “So this is how it will end…,” my breathing continuing to slow. Ev was pounding on the door and screaming at the top of her lungs for somebody to help. I was weakly calling, “Ev, just come and sit with me.” Miraculously, someone heard her, and after being down between 10 and 15 minutes, suddenly there were people all around me who had been working late.

I am so thankful.

Luckily, these folks know how to work with a power wheelchair. Between them, they were able to right me and get the chair back on its wheels. One of them used the attendant control and took me into the building to warm up. Another called 911. All were comforting and kind and very concerned. My first ambulance ride, and just to assure you that I am only bruised and scraped, the ambulance didn’t even turn on its lights or siren. After an exam at the hospital, my kids and Ev brought me home.

And here I am.

I have no words of wisdom this week except to say that even at what seemed like to me the very end, my body still mattered. When I could feel consciousness slipping, I remained present in my body, physically aware in spite of the psychological shock. I could discuss with you the philosophical failings of Cartesian mind-body duality at this point, but I am just a bit too tired, and still very sore, bruised, and shaken up. Even Ev is bruised from the ordeal, a goose egg on the arm and a big hematoma on the leg. We can talk about it another time, for my awareness of just how fleeting life can be, how narrow the tight rope on which those of us with disability roll, how lucky and unlucky the contiguity of variables leading up to and following any event, is hyper sensitized into a weirdly balanced consciousness. My lack of words is a failing of language, not of learning. I learned plenty in this particular fall.

Needless to say, I am just happy to have a little more time for discussion.Ev and I are not finished just yet.

From the Silence

Why has it been so difficult to write in the past month? I can think of all kinds of reasons, none of which seems particularly credible. Perhaps it is three separate infections, nothing much on their own but one after the other, creating iterations and variations on a theme of exhaustion through conditions that are hard to shake. Perhaps it is the deep freeze of late January and early February in Minnesota, when on the day when the temperature reaches the teens, good Minnesotans shed their clothes down to shirtsleeves and enjoy the balmy weather even though it is colder than sin. Or perhaps it is a new phase in the inexorable march of dis ease, a new beginning as I wind down to the inevitable. Illness, winter, dis ease, one is not mutually exclusive of the other, but the energy that each requires compared to the energy that I possess puts me in the deficit.

I am almost always at least a little bit tired.

This is new territory, a new geography where writing seems noisy, and I feel quiet, where two or three hours of napping on top of a good night of sleep is normal, where I am happy to just sit and think, to doze and listen to music wending its way in and out of consciousness. It is a space where the definition of living remains constant, but the meaning shifts and mewls – horizontal to vertical, cries to calls, life to laughter. It isn’t that I am not awake, alive to possibility. Rather, projecting outward seems less and less relevant, and aligning energy, above and behind, head and heart, body and soul, is a far better use of life force. And even though I occupy new space, there is still a consistency that I recognize as self.

I still love, I still feel, I still desire, I still recognize possibility.

ALS has its own gravity, strong enough that being in its orbit yields the realization that each repeated circle is always just a bit smaller, a hair closer to its sun, a flick of the wrist of the master fisherman reeling me in until I am caught and netted. That ALS affords any orbit at all is a marvel, for its main effects are an exaggeration of the laws of physics that keep all of us firmly grounded on the earth. As I spiral down, my perception is blurred so that I cannot tell whether the weight I feel is due to its mass, so vast that light does not escape its pull and so hot that purification by its fire is all one can expect from the encounter. With the completion of each orbit, my existence becomes more and more about being, less and less about doing, and the silence of the space roars its presence.

In this space, verbal expression seems so inadequate, words less meaningful. I find myself turning to music just to name the feelings, the experiences, the Godhead of my dis ease. More harmonic than tonal, more fundamental than overtone, more rhythmic than steady beat, it is music that defines the emotion – E major sunshine and brightness, steady and assured F fundamental, B-flat minor a sadness that hangs five times from the staff like crows on a wire. Words fulfill their meaning through phrases molding and shaping the line so that its apex hangs in the speck of time that defines temporal existence. And as with all orbits there is a point of no return, for it is only a matter of time before I will be consumed by heat and friction and cool atmosphere returning this body to the constant motion of rest and essence. I am assured and reassured by my faith in what I hear and experience.

And I am thankful.

I am thankful for a family as loving and supportive as mine. I’m thankful for the communities that have held out their arms and embraced me with love and tears and straightened fingers and blankets and peanut butter and music and the space to fall asleep. I am thankful for the opportunity to get to know great people in the medical field, compassionate men and women who walk beside me and heroically seek respite for me. And as strange as it may seem, I’m thankful for a life framed by true love and ALS allowing me to grow beyond the lesser person I could have been. When I consider the person I might’ve become, blind and ignorant and tone deaf in a world of art and knowledge and music, the gifts bestowed by my one true love and my teacher are beyond comprehension.

I know how this sounds. It sounds like I am resigning myself to death, even though the silence from which I write feels very much alive. But if I am resigned, then like everything else I have experienced through ALS, it is much better to be ready, to anticipate, rather than to pretend that existential stasis is actually real. Like preparation for the performance of a beautiful yet challenging piece of music, this quiet serves as rehearsal time, a human attempt in the great liturgy that frames life to try to get it right. It allows me and my loves to practice for the moment when quiet is the best gift that we can expect in spite of the noise that always frames the ending. It allows me conservation of energy and the liberation of spirit as I spend time, delicious and beautiful with friends. It allows me to breathe in the honeyed sweetness, the life presence of my one true love, unencumbered by the baggage we think we will require, supported by the truths we will actually need – love and life and laughter and tears.

In the three plus years since ALS framed my life, I have sought to be engaged fully with life as I knew it. Now, it seems more important to engage with life as it is. I hope this means more time with loved ones, both friends and family; more evenings with Ev listening to the local classical station, drinking in each other’s presence and knowing full well it will never be enough; more yoga with Jon and Kirsten and loving joyful visits with my granddaughter and David and Athena, family meals where I can barely keep up with the conversation; more naps during the day and deep sleep at night. I hope this means more time to think, to listen, to perceive that in the silence is life and death and life again.

And maybe, I can kick the last vestiges of infection, bone chilling cold, and dis ease.

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.

Picture Perfect

Almost to the day that I turned 50, I experienced a phenomenon that many of my older and wiser friends easily recognized. I would get up in the morning, look in the mirror and wonder, “Who is that old man staring back at me?” Or I would be walking by a bank of windows or some other reflective surface, and I would catch a glimpse of myself and not recognize the person looking back, as me. As I have continued to age, this experience has only continued to heighten. You might interpret my nonrecognition as narcissistic, and I guess I wouldn’t blame you if you did. Yet, I believe something instructive exists in whether or not we fully recognize our physical selves. I had this experience recently when I downloaded pictures from a small trip we made to Chicago. There was one picture in particular that, when it came up on the computer, made me stop and wonder if that was really me.

We spent our first day at Millennium Park. Chicago has a well-developed park system along the lake, but when Millennium Park was built, it was highly controversial due to its cost and location – a park on some of the most valuable land in downtown Chicago. Now, nearly 10 years after its opening, it is a place of energy and fun and wonderful amenities enjoyed by thousands of people every day, even in the winter. We spent almost 2 hours listening to the Grant Park Orchestra rehearsing an upcoming performance of the Shostakovich Fifth Symphony, we enjoyed bizarre sculptures, and no visit is complete without hanging around the great fountain that projects pictures of faces between its two monoliths, children and adults splashing in its puddles and standing under its bubbling waters. The whole park is meant to be interactive.

The day, lovely and sunny and cool for July, invited us to linger in the park, enjoying its beauty, recording the occasion with lots of pictures. Toward the entrance of the park, we stopped for the picture below – Evelyn bending down to be at my height, me in the wheelchair, crooked, Buddha -bellied, hands tired from steering. I describe this in such terms because for the first time in a long time, I was surprised at my lack of recognition that it was me in the picture. Something about the picture projected what I think of as ALS posture – a picture that my subconscious has always seen in others, but not in me. It broke through my denial spilling waves of cognitive dissonance between the body I have, the person I am, and the way I see myself. Suddenly I saw myself with other’s eyes, and all of those old feelings about disability and deniability came rushing back as if I realized my disabled condition for the first time all over again.

I guess I really am a TAB at heart. I just can’t help it.

It was the circling gyre all over again – a point on the path of dis ease that I thought I had put behind me – only to spiral around to a deeper (or perhaps more superficial) interpretation of that same event. I thought that I had reached some semblance of acceptance, where this physical body is what it is, and where my own self worth is not a byproduct of physical capacity’s superficial interpretation. You can imagine how surprised I was, not just by the picture, but by this over-the-top reaction of shock and denial.

Usually I have my head around these things, and I am able to live within my disability with a pretty healthy attitude, but seeing that picture put me right back into the denial I had experienced when my ALS first began. And associated with such denial is an unhealthy self-esteem tied up in physical projection. I questioned whether I deserved the love and attention of my family and my friends because, after all I was not whole, I was not well, I was ALS personified – scoliosis, gut protruding, wheelchair – bound, muscles deteriorating. Not a pretty sight.

All of this from one picture? Eventually, I was able to find stasis, harmony – a place where I could accept that it is just my body, and the space that I occupy is far greater than the capability and capacity this body projects.

That harmony was brought home to me this past weekend with the birth of our first granddaughter. To say that I am over the top ecstatic, in love, sappy, dewy – eyed, wowed, totally into this tiny human being would be an understatement, and I am blown away by these feelings. Hypatia, all 72 hours of her, is the mirror in which I suddenly see the real projection.

She is, in my mind, perfection.

Before her daddy came into our lives, I wondered if I would have the emotional space for a son or daughter. Would I have enough love for his mother and him? He answered that question the minute he was born, and I realized that love’s space had expanded and there was more love to go around than I knew what to do with. When her uncle was born, I suddenly realized that this loving space exponentially multiplies so that no matter how many occupy its realm, there is always more love to give. When my sons introduced me to the women that are now their wives, that space opened up again, projecting out and underscoring what I had come to learn about love in space even to this day.

And now, this tiny three-day-old beauty who follows conversations back and forth, craning her neck when her daddy speaks, contemplating with the wisdom in her face that only a newborn possesses, has completely stolen my heart, making me reconsider that man with ALS whose picture was taken in Millennium Park. Her birth was an epiphany, a realization that often the person we think we are is not reflected in the physical self we believe we project.

One of the most overused terms of leadership theory is the term “transformative.” When it was first proposed, transformative was in direct opposition to transactional, implying an experience possessing tremendous significance. Now, I have reached the point where I avoid the term as best I can, because it is applied equally to events ranging from putting up new signage in a building, to rolling out a new advertising campaign, to completely changing the culture of an institution caught in the ruts of its own history. For me, transformative has lost its significance.

Today, I must break this self – imposed rule of usage, for I have been transformed.

I now look at the picture of the man in Millennium Park, and I realize he is waiting, waiting for something that will transform his outlook, reminding him that dis ease is more than ALS. I now look at the picture of that man and I see love waiting to pour out on a tiny, helpless, long awaited babe. I now look at the picture, and I don’t see ALS at all. I just see me – heart open to the perfection and possibility of my beautiful Hypatia.

Suddenly, I believe we are both picture-perfect in our possibilities.

Dis Ease Yoga

Before ALS, I honestly believed that yoga was for my wife, not for a weightlifting, biking, swimming, semi-running 50 something-year-old male who knew he was going to live forever. I thought it was nice for the YMCA to offer yoga, even though I believed their main focus should be on weightlifting and crushing physical fitness. I suspect that many hold the same perceptions, believing as I once did, that yoga was for other people.

It took a diagnosis of ALS and an awakening to the phenomenon of dis ease for me to reconsider.

For many months I have held words and thoughts and symbols and sighs in my heart concerning my practice of yoga. For many, the idea that a person with ALS, unable to control any physical function, totally reliant on the good will and expertise of volunteers and loved ones, would state that he is practicing yoga might spawn incredulity. I might’ve seen it the same way two years ago. But the yoga story that I carry is one that has given me deep gifts, both tangible and intangible. And I want to share some of that gift today, not because I believe you should become a Yogi – a student of yoga yourself – but rather that in this particular experience is the complexity of human dis ease, what it means to have ALS, what it means to excavate your spirit until your ideas of success and failure, growth and regression, awareness and unconsiousness are turned on their ear.

Let me start with the physical act of yoga. I go twice a week, on Monday evenings with either Ev or my kids, and on Friday with good friends – yogis in their own right – who very generously donate their time and physical strength to support my practice. The classes are a part of Mind Body Solutions, a nonprofit founded by my teacher, Matt Sanford. Matt’s story is remarkable, but he tells stories that are even more so. His yoga practice awakened him to realizations that the body and the mind are inextricably linked, that injury and disability are circumstantial and not destiny. He teaches numerous practitioners and other teachers, and there is a remarkable group of instructors associated with MBS that are skilled and loving and every bit the teacher that he is, only in different ways. I cannot pay a higher compliment to the master teacher that Matt is than to hold up the teachers that he has awakened.

The Monday and Friday classes are decidedly different from one another. The class on Monday schools me in understanding the ways my new body works. There is great attention paid to the smallest detail in the spine, the diaphragm, the energy of breath as it flows from grounded space out through the limbs, head and heart. And while it may not look like we are accomplishing the poses, each of us – those with traumatic injury, cerebral palsy, MS, chronic pain and even me with ALS – finds our own way into the knowledge and practice our teachers present. To illustrate, the concentrated focus on spinal energy for a person with ALS, a person that one would assume has lost spinal awareness, reveals vast spaces for spiritual growth in spite of the physical loss. Monday nights challenge me, requiring faith like preparation before the practice.

The class on Friday is different, more about the pose, with the teachers purposefully seeking a meaningful way for our bodies to enter the yogic space. Friday is closer to traditional yoga classes, more about the broader practice than the details; and the benefits for the students, particularly those physically strengthened by the practice, are tangible. The students who so graciously allow me to join them on Friday are remarkable in their physical progress. Some show new capability, and in their joyful growth, I must remember that even though ALS robs me of the ability to gain strength from physical activity, my practice of a yogic routine has enormous emotional, spiritual benefit. And of course, there is definite physical benefit in moving a body confined by paralysis. Each class is different, neither better nor worse but complimentary one to the other.

After each class, I am exhausted yet more aligned in space than before I began, more alive to the spirit in the breath, more engaged with the beauty of human-to-human contact. I mark epiphanies exploding into my awareness or creeping quietly into the edges of consciousness. Each of these classes requires physical engagement, more than was ever required of me when I was able-bodied. The philosophy of MBS is to illuminate human understanding through the more readily discernible physical act while challenging us to find deep meaning in the discovery of this very transient and unique envelope of a body that each of us brings to the practice. And strangely, my soul is engaged. No wonder I am so tired at the end.

During any given class, at any given time, I can expect that the practice will remove my carefully constructed façade, layer by layer, piece by piece, until my dis ease is fully exposed.

The experience is more complex than anything I have ever encountered. On the one hand, it is not uncommon for me to focus on some small physical requirement, one that I could do even one week ago, and recognize that it is now impossible without the aid of another – and I grieve that loss in momentary gulps of realization and sorrow that passes through me like saltwater tears. I cannot help it, marking the losses week to week.  Often, as I observe the diminishing physical space I can meaningfully claim, circling down into my own constricted tangible essence, a thought will arise and I will question the attempt, asking questions of myself like, “Who do you think you are to even attempt such a thing? You have ALS. Why are you wasting these good people’s time?”

Then I remember what I have learned – yoga is not in the physical act. The pose is just an avenue to deeper insight, an expansion of breath against the restriction of some perceived elastic band around my torso, an opening of heart against fear of awareness. Awakening to such psychic, spiritual, emotional, faith-filled space holds at bay the panic hidden in the physical loss. It is as if I am on the circling gyre, simultaneously spiraling up and down in opposite directions – one spiritual, climbing into the rarefied awareness, and one physical, falling into deep velvet loss.

I do not know how long I will be able to continue. I hope until I die. Each week is an intertwining of grief and joy, and that seems to me correct.  ALS requires it, Dis ease insists upon it, so that in reality the practice for me each week two times is balancing tears and laughter, realization and unawareness, the spiral up and the spiral down, each week, two times, preparing to do yoga.

And I doubt if I will ever be svelte enough to dress in that specific yoga way.

On the Head of a Pin

Writing would be so much easier if I were Sherlock Holmes. I would describe this whole dis ease experience with the detachment of a forensic researcher, droning on and on about how elementary winding down with ALS is. I would seek out miniscule meanings from the clues I would offer in each and every episode of my life, moving from ultimate human engagement to the need for quiet and peace just to survive the next minute and the next. But I am not Sherlock Holmes.

Instead, I have this enormous need to describe, like an insider with a big and terrible and wonderful secret, just how the story goes. I have this enormous desire to say the real and true (at least according to me) thoughts as they circle and wheel and roll around inside my head. My needs lead to enormous assumptions. I am assuming you will let me know if my governors have come off too far. I am assuming that you will let me know when the insider knowledge is too much for you to bear. I am assuming that you will tell me when you prefer blessed ignorance to the play-by-play with color commentary that inside knowledge encourages. But most of all, I assume that we all like to be in the know, even when the informant is not as smart as Holmes, a seeming reenactor of “Six blind men and the elephant” rather than a deductive genius.

Deduction is not my forte. For me it is a question of balance, and this past week has been one where the question of balance has not only been politely raised, but shoved down my throat.

Questions of balance are not to be taken lightly. For example, the balance between foolhardy and overly cautious could be driving 5 mph over the speed limit. It could be the critical mass one reaches in deciding whether to stay or go in a relationship, or to move away from or remain steadfast in a place of employment. Most of us can point to certain experiences where our life’s stasis was disrupted, where balance became impossible, where it was as if the universe had aligned itself against us. Being homeless or losing your loved one suddenly or being diagnosed with dis ease with only one terminal ending are massively unbalancing to the overarching meaning of day-to-day existence. I used to drive 5 mph over the speed limit.

I have experienced the diagnosis, the disruption of whether to stay or go in both relationship and employment. I have experienced the sudden loss of a loved one. Such experiences require years to rediscover that center, that space where all is well, that head of a pin where the angels dance. The consequences of great disruption are easy to understand. Not so easy to get are the consequences of when the small, trivial, carefully constructed sequences that keep us in an upright space are suddenly thrown far off kilter, not by massive life experience, but by something so exceedingly small that deductive distance begins to look like the only way in which to understand their meaning. In other words, it’s the little things that really get you.

The elevator broke down in my building, and I was not in my third-floor condo at the time.

When you have very little arm extension or hand coordination, 2 inches out of reach might as well be 100 miles. When you have no leg strength, the whole idea of walking becomes fantastical. And when you have no elevator, a 400-pound wheelchair becomes an instrument totally at odds with its mobility purposes. A body that cannot walk or crawl or pull or push becomes stone that refuses to be moved, a Sisyphean feat that embraces the ludicrous, a living example of the overwhelming power of gravity.

Think of poor Ev as she sought to find one or two or three backup plans we could execute. First she called the ALS Association and located a Hoyer lift. With this at least she would be able to take me from my chair to bed and back again. Then she found a hotel that did not require the DNA of our firstborn child to hold an accessible room until 6:00 PM. Then she went online to a support group and asked for advice. And finally she turned to a number of other caregivers who might be able to offer assistance well informed by experience. I am thankful it was summer. Can you imagine such execution with a room full of kindergartners?

It soon became clear that the elevator would not be fixed this day. And as we began to plan for the move into a hotel (I won’t even describe the logistical planning and the amount of equipment in addition to the Hoyer lift required), an idea from one of the caregivers online came through. “Have you considered calling the fire department?”

As we talked, it became more and more evident that getting me into the condo, even if I could not have my powerchair, was most desirable. So, Ev called the fire department. She told them, “I don’t think this is an emergency, but I have no way to get my husband up to the third floor where our condo is. Is there any way you could help me?” The dispatcher on the other end stated, “I don’t know, sounds like an emergency to me.” And within 20 minutes three fire persons – Garrett, Lisa, and Boomer – had figured out how to slip a cloth stretcher underneath me and to carry me up to the third floor. Our lovely neighbors at the other end of the hall loaned me their powerchair for the next 24 hours. And some off-balance balance was achieved.

This took place on Wednesday, and I have to admit that it wasn’t until Saturday that I began to feel like my old self again. The ALS person I have become is so easy to disrupt, so easy to push off balance, so easy to move into painful and difficult spaces, that I hardly recognize him. Yet I know it is me. I know that the energy I expend to create a space that is calm and fulfilling and centered is much more than I realize. The experience of being carried up three flights of stairs speaks of how simply the center can be pushed to the side.

I don’t tell you this for empathy or pity. I tell you this because as cliché as it may sound, dis ease has taught me that change is the one constant on which I can depend. And what I am trying to learn is how in the face of such constant change and loss, joy and life emerge. I know that they do. Many times, even in my ALS normal, I’ve experienced joy in the face of sorrow, gain in the face of loss, constancy in the face of disruption. And yet, I also have experienced just how human and flawed I am. When will I learn that none of this is anything more than the illusion of safety? When will I learn that joy and sorrow, loss and gain, constancy and disruption are nothing more than different sides of the same human experience? When will I learn that balance requires that both the positive and negative must be present?

Sometimes, it takes the overwhelmingly physical teaching of the local fire department to remind you that spiritual space is the counterbalance of physical loss. Sometimes, it takes enormous imbalance, tipping points exponentially reached to again experience the quiet center. Sometimes, it takes dancing on the head of the pin.

It really is elementary.

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.