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.

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.

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.

Looking Good

Even in this time of social media, in this time of Facebook and Twitter, in this time when people will post the most personal of information, even in a time when people blog about their own terminal dis eased journeys, most of us still need to keep private spaces and public faces. It only makes sense to withhold some vulnerabilities behind a public face, masking the turmoil beneath the façade, holding back, demonstrating the wisdom of personal protection and smart boundaries. After all, if we did not maintain a sense of face, then answering the question, “What is wrong?” would colonize our waking hours, even in this most socialized of media times.

My old normal self, when professional considerations dictated the logic of private spaces and public faces, invested enormous energy into the look, the feel, the armored uniform of façade. Now, it would take so much more energy than is mine, just to construct the mask, let alone maintain it for any length of time. The old normal is just not available to me. And yet I still find myself attempting a public face that hides what is going on underneath the surface, in spite of the energy required.

Old habits die hard.

My private-space, public-face condition is especially called out when I meet people I haven’t seen for a while. As they greet me, they invariably will make the observation, “You look good!” Focusing on some superficiality, an article of clothing or my glasses or the color in my face or the smile that belies the dis ease, they are seemingly and genuinely surprised, leading me to think that they believe ALS should ravage its corporeal host in a more horrifyingly obvious way (I cannot imagine). For those that I see on a regular basis, who note the subtle changes as they happen, such interchange is rare, but for those who have not seen me for a while, who perhaps are following my journey through these writings or through news from family or friends, the likelihood is to privately note the losses and publicly proclaim the “good look,” even though the loss is obvious. It is only too human to hiccup some nicety about looking good.

I really can’t blame them. I would do the same, and I have.

I suppose if I was pale and sallow, if I had lost copious amounts of weight or gained full on bloating due to chemo or radiation treatments, if my hair was falling out, if my skin stretched skeletally across my bones, then the ravages of dis ease would be more apparent. But ALS isn’t like that. It moves insidiously and for me, just slowly enough that I can “look good” for a little while, although a little while seems like all I’ve got.

I’m not sure how to respond to “You look good!” Usually, I thank the person and try to think of a way to move the conversation away from my appearance. It is as if they perceive the energy I can no longer muster, a cipher of my former days, a tome to appearance even though God knows I’m already self-conscious enough. Over the past two years I have lost most of my arm and leg muscles, a lot of my back muscles, my abdominal muscles. I am reborn in outward appearance – big belly, skinny arms, skinny legs, weak neck and heavy head atop the whole package. Or perhaps a different way to characterize this new appearance would be that my belly is Buddha-like, although I cannot claim the same inner peace for my life outlook.

I have ALS.

There are variations on the public call out of face. We humans cannot help ourselves. We probe with questions like, “How’s it going,” or “How ya doin’?” not expecting any answer of substance. But for me, such inquiries are fraught with danger. I parry and dodge, usually with good nature and glib honesty, “Oh, I have ALS. But other than that I’m doing great.” There is truth in that answer, but it isn’t comfortable. Neither the question nor the answer lend themselves to the easy repartee that a couple of able-bodied human beings with no terminal illness on their conscious horizon, laughing and joking with one another, would enjoy. The longer I wait to answer, the more uncomfortable the space becomes. Most of us don’t reply to “How’s it going” with complete truth. But the honesty in the answer I have constructed, as glib as it might be, is about the best I can do, and I have to admit that at this point honesty means much more to me than emotional comfort.

I suppose you could accept a biblical interpretation: “Ask and ye shall receive.”

Inherent in questions of state of being are questions of identity. Matt Sanford writes, “What is identity in the face of a radical disruption? Who was I? Who am I? Who will I be? Truthful answers to these questions often take years and years to realize.” There is no question that ALS is the “radical disruption” in my life, and I am often brought up short with the consideration of the real question at hand. “What makes life so sweetly worth the living, something worth the good look, when death in all its ALS forms sits so clearly on your shoulder?” The implication is clear–any outward manifestation of life is inappropriate in the face of terminal dis ease. And in spite of myself I have to admit that it is a fair question. My life has become a search for anything and everything that might balance the knockout punch of ALS. It’s “radical disruption” must be radically disrupted so that a good day is defined as one where the necessity and presence of ALS are balanced by the light of family and friends and music and love.

“You look good!” “How’s it going?” “How ya doin’?”

The human condition is a delicate dance where good and bad, joy and sorrow, sickness and health, dis ease and comfort are neither mutually exclusive nor fully integrated. We are everything and all things, and we are nothing. To say that ALS has taught me to dance might seem disingenuous to some, even ironic in its bold statement of fact. After all, I no longer walk, how can I dance? But the dance dis ease bestows is one that all humans must experience in order for life to be fully grasped in its overall messiness and complexity, its delicious chaos. It is the gift of humanness and free will. It is the gift that takes the focus off of avoiding death, and instead presents a choice – either wither away in the horror or seize the gifts that life and dis ease bestow. It is a balance between the heavily tolling march of dis ease and the balletic leap of living joy.

I don’t look good. My muscles atrophy and my strength wanes. Yet each day my heart is is full through friendship and love and warmth, radically disrupting the radical disruptions of the good looks of ALS. Looking good isn’t about the face or space.

It is the disruptive blessing beyond the look.

Advent

Last week, in a fit of post–Thanksgiving, pre–Christmas serendipity, Ev and I found our way back to the Mayo Clinic for our quarterly pilgrimage. It was a very different experience for us this time, one of diametric opposites in the same visit. On the one hand was our familiarity with the Mayo drill; we have been making this journey for nearly 2 years as Mayo is where we confirmed my ALS diagnosis. The trip to Rochester has taken on the comfort of an old pair of jeans. We know what to expect, who we will see, and with a few exceptions we know what we will hear–no cures and plenty of dis ease management. On the other hand, after our August Mayo visit, we agreed with one of our doctors that given the statistics on ALS mortality, combined with the documented time since my first noticeable symptoms, it would be appropriate to consult with their palliative care clinic to discuss other management decisions. This would be a new experience, and we had no idea how it would go.

I have committed to keep you up on the so-called progression of my dis ease. Mayo is a very good place to document that progression. No longer am I asked to clench my fists, resist neurologist’s pushing and pulling, sit still to be hammered for evidence of hyper-spasticity, or try to touch fingertips to thumb as quickly as I can. There is no point as the weakness in my limbs is so pronounced that even a simple offering of the hand is an adapted accomplishment. Writing is inefficiently accomplished, causing me to spend longer and longer periods between each of these entries. The bad news is that my ALS progresses and my limbs and torso weaken with the progression. The good news is that my breathing is still almost normal, I am able to chew and swallow and talk, and my sense of humor is intact and well within the boundaries of the mostly inappropriate. As I have come to understand ALS more fully, I am thankful that, at least thus far, I have no frontal temporal dementia (although I may have associates and family who would argue this point). The result of the weakness in my limbs and torso is, more than I ever would have thought, a great deal of consultation about toilets and bathing and eating and sitting and as few transfers a day as possible. I will spare the details. No one has offered any counter narrative to the expectation that my lifespan has been significantly shortened by ALS. Hence, the reason for meeting with palliative care specialists remains.

I don’t want my observations about the palliative care meeting to diminish either the importance or the significance of what we surfaced. Suffice it to say that I suddenly realized that the field of palliative care is much newer than other medical fields, and therefore it probably tends to attract a younger professional. From a traditional medical framework, palliative care is probably a dead-end (no pun intended) for an ambitious researcher/treatment provider. However, with a rapidly aging population, an overly eager system to treat that which cannot be treated and the need to account for life quality, palliative care and end-of-life decisions have taken on far greater meaning for most medical establishments. In this respect, it should not have surprised us that the post residency doctor in training with whom we first met seemed incredibly young to be consulting on such mature decisions. And it really should not have surprised us that the supervising specialist was in his early 30s if that.

I must admit my ageism at this point. It felt funny to both Ev and me to be discussing end-of-life goals with a pair of doctors that seemed like their beginning of life work had only begun. But it was important to get over that, and I think in the long run there were two things that were surfaced in the conversation that were very helpful to both of us. First, I was able to articulate three basic premises that allow me to feel that life is worth the challenges of ALS. It should be no surprise that these centered in family and friends and a sense of continued giving valued by others. But the second thing I surfaced in this conversation was probably more profound. The economics of dying are real. I have no desire to bankrupt my beloved partner’s retirement, forcing her to live the rest of her life with less security because we made the decision to put our finite resources into some symptom-management scheme with very little hope on return. This may seem quite logical, but for me it was a profound realization. I have never been comfortable placing monetary value on random acts of living, happily leaving such endeavors to the actuarial practitioners who design life insurance policies and other such products. So in spite of being a bit taken aback by the age and life experience of our doctors in the palliative care unit, the result is one that will help to inform much larger decisions that are coming in the near future. We agreed to go back; a beginning of sorts of a new chapter in managing dis ease’s progress.

This focus on progression and management seems appropriate to me this week, as we are in a season of progression, from prophecy to birth. This week will be my second anniversary since diagnosis, my own Advent into dis ease if you will.

Advent, New Year’s Day on the Christian liturgical calendar, a time for rebirth and prophecies and holiday luster and symbolic representations with multiple and oppositional meanings began on Sunday. In its common usage the word advent means beginning, coming, arrival. But the season of Advent is confusing. Its bifurcated musical traditions are instructive as they careen back and forth between constructs of saccharine consumerism, holy mysticism and all things in between. Its liturgies of consumption are fed and watered and fertilized and shouted from every media mountaintop in the name of commerce, but its prophecies portend a far different intention.

Advent now is a time of prophets and profits, heralding a future of highways made straight, not just tamed by Jeep and Chrysler and their ilk. Advent’s original apex–the birth of a child, disenfranchised by poverty and illegitimacy, heralded by singing angels, announced by the cosmos–now barely holds a candle to the liturgy of the National Football League’s regular season, brought to you on Christmas Eve to ease your pain and fill the dis eased recesses of your soul. And in spite of the wise counsel of so many financial experts, we cycle into holiday debt barely paid off until we begin the cycle all over again in vain attempts to push back the darkness and express the inexpressible through gifts as prone to exchange as acceptance.

Oh, and don’t forget the nativity tableaus brought to you by Santa on the stable’s rooftop. It is an iconography meant to prey on the dis ease of humanity, whether it be a nagging feeling of disquiet or ALS.

Dis ease begets advent over and over again, a progression in and of its self. Although dis ease named my disquiet in the Advent season, I didn’t realize it was its own prophecy, visions foretelling numerous variations on ALS’s progress and loss. It was a beginning, a coming, an arrival challenging me to reinterpret the meaning of the old prophets and insisting on the need for new. It caused me to change my frameworks not just for the season of Advent, but for the advents each day brings in its own tableau of a quieting life.

My advent anticipates a surety of ending, a timeline shortened by dis ease, with just enough mystery to keep me hanging around to see it through. I have learned Advent’s liturgies and rituals in comforting familiarity. I can predict with great accuracy its prophecies and messages and admonishments and yet, still be surprised by what is to come. Advent inflicts dis ease with the understanding of how human dis ease must be. Yet it insists we contemplate how inhumane and cruel life would become without dis ease’s gifts of growth. It does not matter that we humans have confused the season’s intents, nor does it matter if we make the wrong choices. What does matter is that Advent consistently offers new chances, new challenges, new choices from which we can shrink away with fear or we can embrace with joy in life and death to come.

And just like Mayo, it offers no cure, but excellent dis ease management.

Lucky Man

I am not sure why, but the song playing on my personal life soundtrack this week has been that 1970 warhorse, “Lucky Man” by Emerson, Lake and Palmer. One of the first popular songs to use the distinctive Moog Synthesizer wail (if you have heard it, you know exactly what I am talking about; if you haven’t, there is no description), coupled with great background vocals and arpeggiated guitar accompaniment, it was a quintessential comment on commercialization and materialism. Punctuated by the sad cry of the Moog, the initial message that a man who had everything—money, fame, loves, lust—was a lucky man, melted into the ironic observation that the same bullet that might kill those less “lucky” could also fell him. “Lucky Man” was an observation on perspective, perhaps a little simplistic and romanticized, but still compelling. So, the very real and emotionally wrenching life-considerations experienced by Ev and me this past week flipped ELP’s ironic definition of “lucky,” and the act of placing meaning around the fatigue and joy of living through dis ease found me feeling, perhaps inharmoniously…lucky.

“Ooh, what a lucky man he was.”

One of the gifts of dis ease is the fact that what looks like unavoidable loss can almost always be reframed into ironic gain. This week required such reconsideration. I have learned to pay attention to loss’s foreshadowing. For example, before I was diagnosed and still trying to figure out what was wrong with me, I was well aware of the fact that my spinning on a bike seemed very uneven with my left leg having to be pulled around by my right. At the time, I interpreted this as a need to strengthen my left leg, to weightlift, or force myself to over rely on the left leg to make it get better. Of course, now I am painfully aware that the issue was not leg strength at all. It was a message ALS was sending to a person with no frame of reference for the message. The lesson was clear–just because you don’t have the framework for understanding, doesn’t mean a message requiring comprehension isn’t there. Denial isn’t helpful. Change is inevitable. Static expectation is for death and taxes.

“White lace and feathers.”

This week was a Mayo week, and while in many ways, we left Rochester more intact than usual, the noticeable changes of the summer required us to explore more deeply than normal with a need for straight-talk discussions with the medical staff. You might note that I am using the plural here. Another one of the lessons of ALS is that just because I am the one with the condition, doesn’t mean that it’s effects aren’t felt by Ev, my sons, my friends, my colleagues. It is complicated, and I must not act as if I was alone in this endeavor. So we sought help in anticipating the next great paper cut and the next, and trying to stay ahead in this race to the bottom knowing full well it will catch up to us. I feel lucky to understand the implications of complacency and the need to predict.

“All dressed in satin.”

Anticipation is a gift that can be tyrannical. It can lead you to believe that full preparation with one hundred percent contingency planning is possible. Instead of living in the moment you are given, anticipation can cause you only to see the future with its hopes and fears. Yet in dealing with the inevitability of mortality’s costs, anticipating loss can be advantageous. ALS has taught me that if I need something now, and I am not prepared, it is too late. ALS teaches it is not possible to foresee everything, that such attempts are probably going to fail, so moderation in anticipation is appropriate. Having professional caregivers who support me in predicting these physical and emotional challenges, who speak truth even when truth is easier to deny, feels lucky.

“White horses.”

So what has changed? It feels like I have reached a specific empirical tipping point. For the first time since my initial diagnosis, I feel the need to carefully consider the end game, not that it is coming anytime soon, but the combination of so many of the gifts of ALS—anticipation, non-complacency, prioritization, the deep knowledge of the love that follows—have come into a confluence of meaning for me. There are big decisions to reach, I see them coming, I know their meaning, I can exercise some influence not so much on their existence, but on how I want this to play out. And this is a gift for my family and my friends. In spite of the loss, in spite of the grief, human choice remains.

“Honor and glory.”

Even the temporarily able bodied know deep down that this too shall pass. Although we might perceive dis ease, we find it easier to cut off the source of our perception and fly above it as if nothing will happen. ALS strips out the utility of such hovering. It says, “Engage with me now,” and because life’s fleetingness is so insistent, the fear to say, “I love you, I hold you in my heart,” can dissipate. It is a gift—kisses on the head, caring hands, time’s full meaning palpable and present. You could look at this as illustrative of the losses brought on by ALS, for ALS bestows choices not in its progression but in the attitude for approaching what will or will not be denied. But the fact is in the choice, and I am lucky to be so bestowed.

“People would sing.”

This week was a tough week. It began with Mayo and the consideration of hard things. It flowed into the work I love and the consideration of more hard things. It ended with the visit of a dear friend, a play at the Guthrie, Thai food last night and brunch with my family today. It was symbolic of the range of experiences each of us is given—honesty, reality, kisses and hugs and songs, or denial without anticipation—gifts each may choose. I get how hard this can be. It is hard for me, for we aren’t encouraged or taught to see heads and tails as anything but opposites. But as my dear friend Ernestine says, “Life and death are just two sides of the same coin.” What I know deeply is that there is a wave of choices coming to each one of us, and we can ride the crest or be smashed in the wake. ALS just strips away the necessity for protection, for protection in the end is only a fantasy.

“What a lucky man.” Cue the synthesizer.

The Elephant in the Room

Whenever there is something that we don’t acknowledge, or that we cannot figure out, we say, “that is the elephant that is in the room.” The idea is that everyone knows the elephant is there, because it is so big, no one can miss it. But there is also an acknowledgement of denial when we talk about the elephant in the room, and that denial can be seen with the onset and body regression of dis ease. So it is ironic that Ev and I are on the island of Bali, with literally 30 elephants outside our door. And while I don’t want to write about thirty elephants, I do think I would like to acknowledge a couple that Bali has brought back to me in ways that I cannot deny any longer.

The first is that dis ease has its own rhythms. Those rhythms are sometimes hard to discern, but when looking back, you can tell that they have played themselves out in a way that cannot be ignored. Here is an example that comes with ALS. For a lot of us PALS, falling is one of our first symptoms. If I am honest with myself, I can point to my first real fall as taking place one year ago, here on Bali. I put my left foot up on a step and then did not have the strength to raise myself up. We had been walking for hours, and when I fell, I actually broke a bottle of beer in a plastic bag I was carrying, just barely missing cutting myself badly. I jotted it down to clumsiness, but kept the skinned shin for over two months as a reminder. This week, one year later, I fell the very same way, only with my right leg. I have learned to lead steps with my “good leg” since my left is so weak, but we had been walking what was for me a lot, maybe a couple of blocks, and there it was. Luckily I had nothing in my hand except for a cane, and even this went clattering as my leg collapsed. So what is the rhythm?

It is hard to explain this, except that I found myself reflecting on the marvel of symmetry as my legs continue to go away. All life moves to these rhythms, and our belief that we can control them is just another elephant in the room. I actually try to deny them by forgetting that they happened, or chalking them up to other things. But there is no denying the old-man, shuffle-totter of a walk that I now perform, a walk that is well beyond my 55 years. And it is Bali where I fell first with the left, then with the right.

Another elephant for me about dis ease is that dis ease managment is so focused on the unmanageable. I feel so lucky to be working with an ALS Clinic, especially when I compare notes with friends who have cancer. For them, their dis ease management is doctor to doctor, symptom to symptom. At least ALS Clinics have gotten this part correct–what affects part of me, affects all of me. If my spirit is affected, my body cannot be far behind. And this is really tough for people in the curing business. If you cannot cure it, then you have to balance how information is shared with the spiritual strength that a person brings to their particular moment of dis ease. Imagine trying to do that doctor by doctor.

But even with the coordinated efforts of a clinic, it is hard. We see each other every three months, and a lot can happen in that time. As desirable as it is to stay ahead of the symptoms (and believe me that is very desirable), it is often a game of catch up if you haven’t seen each other for a quarter of a year. And with a dis ease like ALS, the body regression can take on other meanings–in three months a person can go from talking to not talking, breathing well, to requiring breathing assistance. Such developments are open to interpretation by both the person with dis ease and the families, friends and professionals around it. Is the person not talking to conserve energy, or is it something else? Should I lie awake at night and worry about his breathing rhythm, or is it something else? This is hard on caregivers, and it is hard on PALS. Dis ease management is about barely managing, and at some point, you don’t. That is a hard elephant to look in the eye, and yet it sits in the room whenever you are talking about ALS. “Son, this elephant says you are going to die.”

So then, what I have figured out with all of this is that it is far better to name the elephants. They exist! I actually got to ride a couple in the past two weeks. You might as well go ahead and do it, because they are too big to ignore, and too present to deny. Each one of us has our own elephants that plop down in our own little corners of this heaven on earth. I know that now. The physical ones are the most immediate, but denial could be psychological, social, emotional, spiritual or any combination of these. My worst denial is that I am changing, and as I change, I have to change to keep up. My old normal always gave me the rhythm of life to make adjustments. Now I have the rhythm of dis ease, specifically ALS, and I have to work really hard to keep up to its steady beat, even though I cannot even tap one of my toes.

On the other hand, at this place we were staying, they call you and say, “Your elephant will be there to pick you up in a few minutes,” and then you climb onto the back of the elephant, and you make your way to dinner.

That is denial I can live with.