“THE REPORTS OF MY DEATH ARE GREATLY EXAGGERATED.” Mark Twain (by Ev)

Happy New Year!  My update is long overdue. Judging by the reaction of some, to Bruce’s last blog entry, I feel I need to clarify how we are doing right now.

One of Bruce’s all-time favorite movies is MONTY PYTHON AND THE HOLY GRAIL.  There is the memorable scene in the plague-ridden town where they cry, “Bring out your dead!  Bring out your dead! ” One old man carried out on a stretcher says, “But I’m not dead yet!”  That’s Bruce.

It is hard to hear the dreaded ‘H’ word – the H, of course, being Hospice. In the United States, we don’t do hospice well.  We wait far too long to take advantage of the hospice benefit.  Sometimes, the person who is dying is not even aware they are in hospice, because hospice wasn’t called in until the patient was in a coma.  We hear “Hospice” and we all jump to the conclusion that death is imminent – a matter of a few days.

Bruce is still here and still very much alive.

Hospice is a philosophy. The main idea is that when a person is within 6 months or so of death, they ought to be made as comfortable as possible so that they can wrap up their life, say the things they want to say,do the things they most enjoy doing, and be able to say their goodbyes to the people they love in a planful way.

We began hospice in mid-September and often wonder why we didn’t start sooner.  Our lives have greatly improved since beginning hospice.

There are the little things, like not having to remember to refill prescriptions and figure out the logistics in order to pick them up. Hospice delivers all our meds and supplies to our door and pays for them as well.

No longer do I need to worry about how on earth I am going to get Bruce to a clinic to check a possible ear infection, or a skin rash or a sinus infection.  Hospice sends out a nurse practitioner to check on him in our living room.

Weekly visits with our  lovely hospice nurse allow us to ask worrisome questions, draw on a wide variety of medical expertise and specialties, and then decide on a course of action as a team.

Instead of carrying the whole heavy burden of Bruce’s ALS by myself, I suddenly have an entire caring team to help ease my load.  We have wonderful aides who come and shower Bruce, 2 fabulous masseuses who soothe his pain with healing massage, grief counselors and a social worker who check on my emotional and physical health, as well as the well-being of our sons and daughters-in-love.  We feel so supported!

And yet………. Death is here, in the corner of the room.  Death is patient; it isn’t Bruce’s time – yet.  Once in a while, Death nods his head, gives us a wink – as if to let us know, “Hey, I’m in no hurry. Take your time.  I don’t mind waiting.  I’ve got a whole briefcase full of cases I can go through while I’m waiting for you, Bruce.”

We welcome your loving messages. Better to say the things you need to say now, when Bruce can answer you back.  I am creating a scrapbook of your loving notes to share with my kids, their wives and my grand-kids (born and those not yet a twinkle in someone’s eye).  If you haven’t written a “Dear Hypatia” note yet with your memories and impressions of Grandpa Bruce, please do so now.

Bruce is still very much involved in life.  His book, WE KNOW HOW THIS ENDS:  Living while Dying is available for pre-order from the University of Minnesota Press as well as on Amazon.com.  Bruce is involved in plans for launching the book and for creating an ‘enhanced E-book” version as well.

He tires more easily these days and is entirely dependent upon his Trilogy machine to help him breathe. As his muscles waste, his joint pain increases so he is taking more medication for pain these days.  But Bruce enjoys visits with friends and colleagues. Please call and arrange a visit. Just watch for signs that he is tiring.

Thank you for all your prayers,  positive thoughts and caring messages as we walk together towards the Next Big Adventure.

(If you would like to receive automatic updates, please click on the following link:

www.caringbridge.org/visit/brucekramer

 

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Happy Complicated New Year!

In the four years since my diagnosis into dis ease, I have sought to make the best of a bad situation. In writing about the experience of ALS, my commitment has been to be as honest as possible, even if I felt the situation showed me in a less than flattering light. I admit that at times, I pulled my punches, relying upon my reader’s ability to fill in the blanks, not making me describe in graphic detail some of the more physically compromising situations I have experienced. I appreciate the space you have granted me in this respect. It has allowed me some semblance of dignity in even the most immodest of situations. But now in the past four months, I find myself more reflective than I have ever been in my life. And this reflective quality has made me question whether I have been honest enough. I am on the fringes of my life, and my feelings are confusing yet beautiful, frightening and powerful, profoundly spiritual while grounded in day to day experience.

In other words, my dis ease becomes more complicated, and communicating clearly about it confounds me.

The elegant hand of ALS holds great surprises. I never knew that so much grace and peace and joy could be found in the inexorable experience of dying slowly. Dis ease plunges me into a pool of beautiful sadness. It focuses me so that each day, I awaken with profound gratitude for my true loves, my one and only, our sons and daughters in love, our energetic, remarkably bright and ever-growing granddaughter. I am overwhelmed by the thankfulness I feel for friends, those who volunteer to care for me, those who engage me in their day to day life challenges, those who share gifts of music and poetry and yoga and life possibility. Yet simultaneously, an undeniable fatigue dogs me, washes over me, nips at my heels, impedes the energy I might muster for the very things that so delight me. The daily life challenges I experience – total dependency on others for the simplest of tasks, the continuing breakdown of basic physical functions such as swallowing and breathing and the like – exhaust me into sweet anticipation of the relief that will come with my death. Death has become a good friend, a harbinger of the final joy awaiting me, assisting me to shed the ALS revealed imperfections of my physical body. The spiritual conflict is clear – I am utterly in love with this ever deepening experience of living while at the exact same time I happily anticipate the relief death will bring.

I tell you this not to elicit sympathy, not to shock but to describe, in as honest a way as I can, what it is like to be a 58-year-old man with advanced ALS – it is complicated.

I suspect that this complexity is one of the reasons that we humans don’t like to think about death, talk about death, place death on the altar of our lives and give it the due it truly deserves. Death’s consideration seems so antithetical to life, to living fully, to the joie de vivre that all of us believe we deserve. For me, it wasn’t until I was confronted by death’s reality that the juxtaposition of life and death became even a little meaningful. And I also suspect that for the vast majority of us, this first juxtaposition takes place when a family member or dear friend faces their own mortality. Even here, the complexity is not readily apparent since it is someone else’s death with which we have to deal. Our feelings focus on disbelief and anger and grief at the loss of loved ones. Meanwhile, our own mortality might be briefly considered, but it is just too easy to ignore.

In the days before I believed in death, if I gave any thought to it at all, my belief would have been that death was singular, individual, and that it’s only lasting effects were a loss that those left behind would eventually get over. This was my own experience, in spite of the fact that death had been with me since the age of 14 when I suffered the death of a friend. As I matured, I witnessed numerous family members passing from this life. I had ample experience of other’s deaths, but no encouragement to believe in anything remotely resembling my own. The concept of living while dying was too complicated to incorporate into my day to day living.

Now, I am a believer.

The simple realization of ALS requires unvarnished honesty just to deal with each new loss. Living while dying is no longer a theoretical concept but a necessary reality, and it can be confusing. The conflicting feelings that frame the final months of my life have emerged a new reality. As much as I would like to go it alone, this new space is so complicated that support is a requirement and not an option. Going it alone makes no sense. Without support, life for me and those I love was becoming too chaotic. The noise of the chaos overwhelmed us as we sought to discern appropriate levels of care that conformed to the energy we possessed and the resources we had at hand.

This is why we engaged hospice care.

The decision to move into hospice provides experience and expertise to help us make these final decisions as the endgame becomes clearer. I say we, because ultimately it is our family that has engaged hospice care. My own imminent death, coming whenever it shall come, is not our only consideration. From the beginning, ALS has affected not only me, but family and friends. Hospice affords support for all of us. Now, there is a stability in our lives that was not present four months ago, and while the complications have not gone away, the meaning of our lives together continues to deepen. Our decisions are no less complex, but our caregivers, nursing staff, and others who are part of the hospice team provide a quiet, dignified and knowledgeable resource as we negotiate the inevitable irritations and discomforts that go with advanced ALS. Meanwhile, they support us in anticipating the larger challenges that lurk on our horizons. Inevitability and anticipation, love of life and welcome death is what we now consider, with all their joyful complexity and sad simplicity.

The challenge is to not allow the inevitable day to day comfort issues overwhelm the meta-dialogue about what it means to die well.

Our hospice nurse has a knack for asking questions that hone in on the issues that lurk below the surface, that define both a good life and a good death. These are the conversations that transcend the rashes and sore muscles and joints, the curled fingers and swollen hands and feet, leaving them in the functional dust of symptom and relief where they belong. It isn’t that symptom and relief are not important, it is just that once we have decided on the analgesic and patches, the padding and massage, the pills and painkillers to deal with each irritation and pain, there still exists a vast chasm between what generally emerges in conversation and what is left unsaid. This is where our nurse demonstrates such skill.

We have discussed what it means to die well. The endgame of ALS is too often framed by a sense of powerlessness. We feel powerless against the inevitability of each symptom, each loss that is in our future. There is no legal or moral reason to feel powerless, but our choices are often limited by the fact of who is treating us.  Hospice ensures that we can evaluate whether or not treatment unnecessarily prolongs pain and suffering or whether it provides relief. It should be our choice as to whether we receive any treatment and what that treatment should be. For me, a ventilator is treatment; a feeding tube is treatment. At some point for all of us, the balance tips so that in spite of the fact that we have a tremendous love for the life we have been given, it has also become so painful and difficult to live, that further treatment is actually cruel. To die well means to choose what happens as the ending becomes inevitable.

This blog has been one of the most difficult that I have ever written. It opens all kinds of questions that each one of us will face. Unless the goal of dying well has been rejected, we have to talk about these things. Death affects everyone, and the complexity of loving life and welcoming death is confusing. If we value dying well, filling out a form style, so-called  Living Will, does not accomplish the kind of deep conversation that all of us will need as we approach  our own deaths.  I have known that this time was coming for me, and there is still much that I wish to accomplish. This is hard stuff, but it ought to be. Life is a remarkable gift. The choice to end procedures that prolong it is very personal and requires great care and respect. Most of all, it requires honesty.

One of the reasons this is so hard to write is that each one of us carries our own baggage, our own interpretations of what it means to consider our deaths. Many of us don’t realize the resources that might be available to us (my hospice care is covered by Medicare for example). I don’t ask for your agreement with what I have written above, but I do ask that you respect my thinking about my own choices. And I do want you to know how helpful it has been to engage these questions with our caregivers from hospice. Too often, people are afraid of the reality of their life’s end and this causes them to avoid the support that is available until it is almost too late. The end of life is a confusing time, and we do not have to go it alone.

For me and my family, we now experience the support to better negotiate the next steps looming before us.

PS: please vote for this blog @Healthline.com. Currently, it is number 23. You can vote once per day, and there are 11 days left in the voting. Many thanks.

http://www.healthline.com/health/best-health-blogs-contest

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.

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.

Endgames

Perhaps you have noticed that I haven’t blogged for nearly 4 weeks. There are reasons for this. My physical ability to write is more and more compromised by my lack of strength to pull up to the computer and my lack of stamina to stick with the writing once I am there. Of more significance is the fact that I have chosen not to put up two separate blog entries. It isn’t that I am afraid to share how I am feeling, especially when my feelings have to do with grief and loss. It isn’t that I am in such a bad space, that I’m afraid no one will like me anymore. It has more to do with the constant existential awakening that comes with dis ease, with this seemingly infinite process of winding down, yet moving at the speed of ALS. In the past two weeks, I have allowed myself for what seems like the very first time, the question, “Is this the beginning of the endgame?” What a question to ask, as if the moment of birth is not the beginning. But we aren’t conscious at the moment of birth like we are in the bloom of our adulthood, so the question takes on meaning even if it borders on the rhetorical.

My French muse Francis Cabrel sings the angst, “J’avais des rêves pourtant.”

Raising the question of the endgame is significant for me. Before, it felt like an academic exercise, one that fulfilled my need to stay ahead of symptoms and losses in a way that gave me the illusion of control. But as I look back on my control rituals, it is clear that they lead to this point: The endgame is coming, I don’t know when, but I can have faith in its presence now in my life, a new phenomenon for which to prepare. And in preparation it is useful to stop, to take stock, to recite the poetry of grocery lists and ledger sheets that account for gains and losses, mumbled psalms of what is in my capacity and what is not, utilitarian self-pity, borderline whingeing, yet keeping ahead as best I can, even though I know I am seriously falling behind.

The loss is easier to share than the litany.

I cannot help but feel robbed, not of immortality, but of the 30 years of healthy old age that I honestly thought was my future. ALS provides the perfect corrective to the best of plans. She grants knowledge that our imperfect physical envelopes in which we place so much importance, given to us for such a short time, always fulfill their design destiny and break down utterly and completely. There are so many ways to shorten our lives, and when you consider how many ways you could go, how easy it is to experience catastrophe, how unremarkable is death, then dying before one’s so-called time should probably be seen as more the norm than the exception. The 30 or so years that I like to believe would have been mine were it not for ALS are so minuscule in the scheme of the universe, that it is tempting to diminish their importance, to believe they are meaningless.

But they are my 30 years, and I had dreams and plans.

I planned to sleep in the arms of my one true love, to be awake, so very awake to her presence in my life. I planned to be there for my boys and their true loves and the children that they would have. I planned to cook birthdays and anniversaries, Thanksgiving and Christmas, three-day weekends and one night chili cookoff’s, holidays and holy days. I planned to be the husband and father and grandfather of legend. I planned to bring a rational voice and compassionate love to the education of children, the emotional healing of people, the design of systems. I planned to be the best friend anyone could ever have. Before ALS, I could see those plans opening into limitless vistas.

I am cured of planning, at least for the moment. Now, I pay attention to the losing – hand dexterity, back strength, neck strength, vocal presence – all of these to go along with the legs and arms and torso already gone. And with the losses, I have struggled to play catch-up and turn to new ways and old ways that I now realize are just barely ahead as the losses pile up behind. And yet, I am not cured. I still have plans – final words, time spent, memories, music.

I plan to end in a better space, always a better space.

If there is anything that I have learned from ALS, it is that the bad times are like changeable weather. If you have patience, things will begin to turn around. There is no big event, no one thing that turns me away from feeling sorry for myself toward that person I want to be. In spite of my whingeing, I work hard for spaces devoid of soul-killing feelings – deep resentment, crushing bitterness, prolonged anger. It isn’t that I don’t own major reserves of these feelings, but grim feelings have no payoff, they depress colors, muffle sounds, numb the touch and leave me hopeless in dis ease. So I do my best to acknowledge them, communicate them, concentrating on things that bring me back into the here and now space where the beauty of living is so much clearer, even if it feels shortened by circumstance.

Listen! Grimness is legitimate. Despair is normal. Helplessly hoping is most human. But I can handle it, we can handle it, it only overwhelms my body. My soul still sings. My spirit breathes.

So many people offer time and companionship, keeping me from loneliness, caring for such small yet important items as straightening my fingers and helping me adjust in my chair, providing thoughtful company, bringing bread. The times I can get out to church, to yoga, even to a wheelchair tuneup are a blessing, for the people whom I love touch me with their strength, and I feel better in spite of how fatiguing the logistics can be. The unconditional love of Ev and sons and daughters–in–love, of friends and colleagues, strengthens me for the eventual time to come when I know that ALS will overwhelm me, and the decisions we make together will be like pouring joy’s waters through the clarifying filters of sadness.

And of course, there is Hypatia – pure granddaughter.

In a funny way, the endgame opens a panoramic view. Quiet and starlit, soft and peaceful, waves and wonder, I just need to breathe into it, to open myself to its beauty, to not worry about the plans or the timing. I understand now that the plans I made were not so much about me but about everyone else whom I love. The love will find its own way if I will allow it the space. And I will be able to move through this no matter how hard it gets, if I will just stay open to the epiphanies and revelations on the horizon and right before me. “J’avais des rêves pourtant.”

And the endgame is just one end, opening new beginnings.

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.

Eulogy

Paul and I were brothers. Though we did not know each other for very long, we were brothers. We shared common interests, a love of family, adoration of our wives, easy love of children and grandchildren. And we shared a special knowledge, one so intimate and beautiful and terrible that we rarely spoke its name, for we shared ALS. Paul and I were brothers.

Initially, I met Paul through my blog, having just written my disappointment in the failure of an 18 month drug trial in which I had participated. Given the whiny tone of this particular blog entry, Paul made the decision to introduce himself to me in this most inimitable way – a little bit about him, a little bit about life, and a big hang in there. He wrote:

“I want you to know that you’re not alone. After a year and a half of pursuing cardiology and pulmonology we finally got to the right Department–Neurology. So I was diagnosed in May of this year, but in fact I am starting my third year since onset of symptoms.” … He went on to share my disappointment in the drug trial, adding his own comment on a stem cell trial that he thought was probably not on the up and up. And he ended with, ” I’ll come back at you again but what you wrote that I just read this morning compelled me to reach out now, taking a risk of sounding trite. I’ll just say Hang in there for now.”

So Paul reached out to me, partly in introduction, partly to comfort, but mostly because he knew we were brothers.

My first meeting face-to-face with Paul was at a place that many of you might find surprising. Paul and I were yoga buddies. We would meet at an adaptive yoga course, Paul driven by Dee, and me driven by a friend. We would do our best to fulfill the different adaptations of the yoga asanas, and the nature of the class always meant that our arms were out and our feet were up as we tried to live up to the desires of our teachers, who I guess I should add were female. One Friday, I received an email from Paul telling me that he could not come to yoga that day. “Tell those skinny ladies that I’ll be back next week,” he wrote, and I did, exactly as he wrote it, and they were delighted. More importantly, after yoga Paul and I would drive up to each other in our chairs, grasp hands and talk quietly. We talked about how life was going, we talked about grandchildren, we talked about our wives, and most of all just out of earshot, we talked about living and dying with ALS.

The first time I visited Paul at his home, I went with a caregiver, Natalia that we both had shared. She tried to prepare me for the experience, telling me that I would probably have to be a very good listener. I reassured her that I thought I could be as such. But to be honest with you, I never have heard a man who could segue from story to story to story without taking a breath, and this was in spite of the fact that he was struggling with his breathing. Paul, on his own turf, was one at which to marvel, to shake my head, and to laugh and to cry.

To me, Paul was larger-than-life.  Overcoming numerous life challenges including surviving a major heart attack, Paul once told me that his heart attack changed his outlook on dying. He told me that ALS could not scare him, because he had seen what was to come. He said, “All of this stuff,” and he waved his hand, “is not that important. It’s much more important to love your friends.” And when we left each other that day I told him, “I love you man.” And Paul replied, “I love you brother.” After that, whether it was a phone conversation or a visit or yoga, we made sure we told each other we loved each other whenever we said goodbye. ALS taught us that life is too short to not say the things that are true.

I was asked if perhaps I might talk a little bit about what it was like for Paul to battle ALS. I have struggled with that part of this eulogy, not because Paul wasn’t valiant or brave or strong. I’ve struggled because when you do battle, it is too easy for the enemy to define you. Paul refused to be defined by ALS. He battled its symptoms, he rebelled against what was good for him; I cannot tell you how many conversations Paul and I had about adventures in the bathroom. But ALS could not define him. Instead, he told stories – stories of his childhood, stories of great challenge, stories of his work life, stories of his family, stories of goodness and love, always with a bit of wit and a bit more a moral. If anything, Paul defined not so much the battle, but how to make peace with a life in ALS.

Six days ago on Sunday afternoon, my son and daughter-in-law drove me to Waconia to see Paul. I knew it would be the last time I would see him, I knew. When we arrived, Molly met us and through tears told us that Paul had rallied. We went into the room and there was Paul – surrounded by a pink neck pillow, a monkey backpack, and all manner of family – Dee ever present, sons and of course, Molly. They graciously allowed me to roll up next to him, and he grasped my arm as if he would never let go – I can still feel it today. Paul introduced me to his family saying, “This is my friend Bruce. He is a good listener. And I tell him stories.”

Paul was in that holy space between life and death, lucid for one minute as he spoke of his needs at hand – a bit of water, an adjustment of the pillow – and seemingly beyond all of us in the next as he commented on how beautiful was the view. One of the last things he said was, “You can see the view from Highway 7.”

In hindsight, I now realize that of all of us in the room that day, Paul was the most aware and lucid.  You see, about a month ago Paul and Dee visited my wife and me at our home overlooking Highway 7. Far from moving in and out of lucidity, Paul offered the same gift as when he initially reached out to me. He reassured us beyond our own ability to perceive, that there would be beauty. And for me specifically, a brother in ALS, he offered comfort, prescience, a glimpse of the beyond, that it would be beautiful, and I would see it.

As I said, we were brothers; we shared a lot. When I left, I told him that I wouldn’t say goodbye because I knew we would meet again. In my future, and probably in all of yours, are many more stories from my friend, my brother – Paul.

I love you man.