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.

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Fear of Failure

Before I start this week’s reflection, I would like to thank all of you for your kind words, thoughts and very considered advice after my last blog. Your willingness to walk with me as I roll along is often the best part of my day.

Last night, we watched the Tony awards. I love musical theater, and I like serious drama, so it should be no surprise that we decided to forgo Game of Thrones and Mad Men in favor of this giant, three-hour advertisement for one of the great joys of New York City. With all the revivals showcased last evening, it was a little bit surprising not to see a show by Stephen Sondheim represented. Of all Broadway composers, I think Sondheim is my favorite, and with the week that I have had, I found myself humming a tune from his show, A Little Night Music – “Every day a little death.” I know this sounds maudlin, but the song actually represents the antithesis of how I have wanted to live since my diagnosis with ALS.

Every day a little death
In the parlor, in the bed,
In the curtains, in the silver,
In the buttons, in the bread.
Every day a little sting
In the heart and in the head,
Every move and every breath
(And you hardly feel a thing)
Brings a perfect little death.

Invariably, you cannot approach ALS without thinking, at least a little bit, about death. When I was first diagnosed, I thought about my death a great deal. Then, as I seemingly worked through each ALS challenge presented, it became less and less apparent that my death would be sooner rather than later. In many ways, I would acknowledge death’s presence, but only begrudgingly and only within the larger context of dis ease. But especially in the past week, as I have dealt with a physical pain that I have not known before, as I have dealt with the emotional pain of saying goodbye to my hand function, as I have dealt with the pain of realization that there really is no going back; death has entered into my conscious space, pushing out the comfort and teaching of dis ease, replacing it with the sparkling clarity only its presence can bring.

Don’t get me wrong, I am not looking to be relieved of life just yet, but the hopeful sense that I can do this and do it well has been replaced with the realistic sense that I will do this and perhaps not with the grace and hope I expect of myself. Such realization causes me to reflect, to ponder, to become introspective on the value of my life as it is now, as it was, and as it will be. And of course when you begin to question value, then you begin to superimpose success and failure into the interpretation of life that is and was. And believe it or not, it calls into question the way you are blessed or graced or forced to die.

How do you fail at death?

In the past, I have chosen to reflect on such questions by turning them aside and asking instead, how does one fail at life? By turning the question to a life question, it seemingly delimits dying’s impact. I think it’s a good way to think – that a good death is based on a good life. But there is a small scratchy voice that asks me if I am avoiding the question entirely by turning it on its ear. After all, unless you choose to take your life, it really does seem that the choices around death are few and far between. So the question of failing at death might seem to be illogical or even silly, yet I find myself asking how that might work.

I have no way of knowing how much time is left between today and the day that I will die, but I am aware that the chances of having one year, a little over one year, a year and a half, less than two years are very good. I know this based on physical symptoms and how quickly they have come on. I know this based on what mitigating factors are available to me and how developing systems for catastrophic disease management are skewed toward profit and not cure. I know this intuitively in the depths of my gut and my soul.

There is nothing like impending death to focus your thinking.

So today, I find myself in a strange position of feeling urgency to bring certain parts of life to fruition while at the same time recognizing a lack of physical strength for the task. Here is an example. From time to time I receive lovely personal comments from friends. Sometimes these comments are soul baring, graceful dances, wisps of ether or shocks of electricity as friends and loved ones struggle in their own versions of dis ease, seeking to share a further understanding of my plight through theirs. They share thinking that perhaps I might have a broader capacity of empathy for what they experience. They share to comfort and question the humanness of living. And the energy that it takes to respond is so great, the physical needs for written response are so beyond me, that I just don’t. This is not the way that I wish to be engaged with my friends. This is not the kind of friend I wish to be. It feels like I am projecting apathy about issues that are truly troubling for my friends. It feels like I am not offering the love and care that I feel. There is urgency to respond, and fatigue in the planning.

It feels like failure.

I suppose that nothing focuses this urgency like the upcoming birth of a granddaughter. What little she may know about me will be in the stories of her parents, of Ev and of course what she discovers on her own. So I have been plotting a presence in her life, yet questioning if it is possible to achieve. For example, I’m beginning to think about digitizing photographs of our family when her dad was just a boy. I’m wondering if I could write stories around these photographs that would help her to know how special her father is through her grandfather’s eyes. Such an offering is a gift that children love. They love to hear stories about their parents when their parents were young. They love to hear of the childhood adventures lived out before their time.

But you can see how the logistics will be tricky. I cannot place pictures or slides on a scanning tray. I will need help putting them in order. I will need to write carefully. Above all, I will need to be mindful of my new granddaughter’s ability to comprehend the stories that are being told. I won’t be there to mediate the scary parts. If I cannot get to this, it will feel like failure. If I do not leave something of myself as a gift for her, it will feel like a purposeless life. It will be the little death I have tried to avoid.

In the end, I suppose it is about the fact that a good death is so tied up in the future beyond the event. It is the translation of one childhood into another, of love projected well beyond the time it was given, of DNA beyond inheritance.

And I suspect there will be no Tony for the performance, although I’m hoping for a long run.

Sandy Hook

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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.

The Snake

This was one of those weeks where sadness lay just beneath the surface, like ice melted from a lake yet still lurking beneath dark waters where the sun and wind cannot reach, bobbing up from time to time and breaking free of the liquid above, and then sinking back just beneath to keep the waters cold and impassable. I was stalked by my feelings like ice–perceivable, tangible—testing my skills at holding grief for the past and fear of the future at bay. When I get this way, there is nothing to do but accept the sorrow, hunker down and know that anything has the potential to set me off. This is the way of dis ease. A couple of weeks ago, a dear friend asked me if I ever just have a bad day. She was a few weeks off her own surgery; her own recovery dis ease, and her question was urgent, like an itch just out of reach. I held her hand and said, “Yes, yes. Without a bad day, there are no good ones.” I should have told her about snakes.

I’ve never been particularly afraid of snakes. Growing up, I loved the garter snakes that lived around our newly minted housing development, and I loved more the stories my dad would tell about corn snakes in the barn of his youth. As a young science teacher, he taught inner city kids to catch black snakes and hognose snakes near the river that ran through our town. Nothing holds a seventh grade boy’s interest like a snake eating its meal—wise teaching on my dad’s part. When we lived in Egypt, we were aware of the deadly mambas out in the desert, although I never saw one. I did see a number of hooded cobras in Thailand, and the thrill of them was both tingling and breathtaking. We learned not to step on sticks in the dark as one could just as easily have been a cobra out to warm itself or worse, a green mamba, one of the deadliest snakes known to our world. As a boy, I returned again and again to Kipling’s The Jungle Book and Just So Stories with particular love for the stories featuring Kaa, the great 30-foot python and friend of the boy Mowgli. I assure you that my version was not the Disneyesque lisper–just scary enough but not too, titillating the little ones but not overwhelming them with fear. The Kaa I imagined was formidable, strong, deeply disciplined and powerfully loving. I loved Kaa’s mysticism, and I loved how Kaa could talk with the boy Mowgli in a way that his guardians, Baloo the bear and Bagheera the panther could not. Kaa spoke a truth to be considered or disregarded, and this is why I think on him now. Where the bear and the panther pushed Mowgli to become conscious of the fact that he was indeed a man, Kaa merely said, “It is difficult to shed one’s old skin.” Kaa, a great teacher, offered just enough information so that the man-cub’s curiosity was piqued, but not so much as to overwhelm him. Best to stoke the imagination and inquisitiveness and then let things happen, was Kaa’s method, and it was ultimately the best way.

Kaa tunes me into the teachings of snakes, and now the snake offers a conception of sanity in such a week as this when the realization of new lost skin cannot be denied any longer.

Here is the recitation, the litany—I told you long ago I would keep you up to date. Like a snake, lethargic and irritable, I now shed the last concept of me for a new one, defined by iterative losses that caress my psyche with angst and apprehension and pile up dis ease’s loving gifts. How does it love me? Let me count the ways. Standing for any time longer than a few seconds is an invitation to fall. My ability to transfer–to get up even if I am able to transfer, to get into bed without the help of another person, to get out of bed without assistance–all of this is now compromised beyond reclamation. I cannot reach out with my arms; they must stay in contact with my body or some support surface, seriously affecting how I eat or reach for something just out of hand’s range or place a folder in the out-basket or cut my food or shake hands. And my fingers, my tactile connection with words and writing and thoughts and emotions and the turn of a phrase and the joy of a scribe, no longer behave with any facility that resembles normal working hands and arms and brain. All of this has become in your face reality and not some unconscious abstract irritant. It requires grieving and quickly, redefining such basics as humility and modesty and sufficiency.

I relate to the shedding of skin in so many ways. Snakes become irritable, lethargic, losing their appetite and lying with milky eyes as their bodies seek to throw off the old and bring on the new. It takes a lot of energy to shed the old skin, with the final act a physical scraping and twisting as the snake rubs and scratches against sticks and rocks that will aid the metamorphosis. In spite of their physical discomfort, it is the way of snakes to shed so that a new skin can emerge. And ironically for some reason, with the week that has been, this concept of shedding for growth comforts me. Just as shedding is the way of growth for the snake, my growth in physical loss is the way of dis ease.

Dis ease sheds capacity, and while that shedding seems far too easy, it is what frames each evolving iteration of loss that I now experience. Since my first physical symptom, I have come to realize that from time to time, I must completely reboot, shedding the old concepts of what it means to have ALS like the old skin they have become, and embrace the new losses as progress, usually with some physical struggle and emotional upheaval thrown in. ALS has changed me. Dis ease has depleted me. I can mourn each loss, but I must not allow myself to become comfortable on the new plateau where it lands me for that is not the way of life we are granted.

Friday night, Ev and I settled in on the movie Extremely Loud and Incredibly Close, and shedding’s reality came home to roost. While I found the characters extremely compelling, and I stuck it out in spite of the fact that I don’t do sad movies very well any more, my reaction was just another indication of how I have changed since ALS came into my life. I can think of all kinds of indications—there is passion underneath dis ease, there is overwhelming joy, there is sadness—all translated into one of the few physical acts I can still accomplish; holding myself together. And the fact remains that wet tracks, hot and acidy, inspired by the events in a made up story just real enough to believe, furrows hidden by practice, but always there to the practiced eye, appeared on my face–where the tears have been, where tears continue, where tears will be.

But in the watching came another realization. There is a line in The Jungle Book, “We be of one blood, thou and I,” the universal greeting that when spoken, ties the speaker to those with whom she speaks. Dis ease is a universal greeting as well, and it opens the doors that we all share in this earthly existence—death and birth frame our lives. Thus, I can be dis eased and alive, accepting what will happen in its own time, paying just enough attention to stay ahead, but not so much as to overwhelm, and in the end, moving beyond the paltry lengths of temporary ability into the skin of one who must continue to grow. It is the way of the snake and the way of dis ease, and it continues to tell me that I must meet loss with growth, all at the same time, until I can no longer meet it.

And maybe then, I’ll just shed my skin and leave it far behind for another to find.

The Swirl of It All

You might have noticed that there are some words I often come back to for descriptive purposes.  For example, I talk about fatigue instead of tiredness and meltdown over the adult version of temper tantrum. I try to avoid being overly political or cynical, not controversial but challenging; usually commenting on things that through the eyes of dis ease, seem very different from the temporarily able bodied perceptions I used to hold as if they were permanent.  This is deliberate as old familiar feelings, thoughts, intuitions, perceptions passed through always present ALS, take on the quality of almost-epiphanies, significant realizations calling for extra attention.  When I need to work something out, when no moniker of enlightenment magically appears, I know that there is nothing to be done except write, examine the inadequacy of written words and rework the writing over and over until it yields meaning.  I often describe this state as being in a “swirl.”  Usually associated with the layered blending of frozen yoghurt, I find the word highly useful in describing thoughts that have no peace.  Swirl is its own dis ease—as if you are carrying something quite significant, but the only way you can find to describe it is mired in something trivial, incendiary, naïve, incoherent, inadequate, mute when words are needed, and over-spoken when a quiet center would be more useful.

For me, swirl often happens at the confluence of several significant events.  This past week, the combination of a visit of friends from Norway that made me much more conscious of the trial of a mass murderer, Supreme Court decisions on healthcare and immigration, and ramped up coverage of Minnesota’s so-called marriage amendment created such a confluence.  Each of these public events inspired its own swirl, with the majority of the discussion reflecting a less than thoughtful, easily predictable direction.  In fact, the way that these issues were presented was designed to appeal to specific frames of reference—that combination of culture and experience that creates scaffolds of knowledge from which we judge all experiences, all situations, all others.  While it may be impossible to experience anything other than the coverage we experienced last week, I feel something else is really going on.  It could be argued that these three highly charged issues are being used to sort us into uneasy conscious columns of culture, although I cannot help but feel that the manner of presentation is much more about a broader spectacle of dis ease. 

The trial of a man that killed 77 humans has raised a number of public, fundamental questions about justice and just proceedings, the role of the press, whether a civilized society should have the death penalty or life sentence, and especially about the responsibility of all these institutions to the families and friends and memories of the victims.  And of course, the so called debate on universal health care was not definitively answered by John Roberts and the Supreme Court.  That decision has inspired Shakespearean heights of “sound and fury, signifying nothing.”  I have Facebook open right now, noting the “political” postings of my “friends” and I can only observe the lack of critique for anything that vibrates in harmony with personal beliefs, and the over the top diminution and outright vitriol that is reserved for those who differ.  Add in the advertisements that have started appearing in the State of Minnesota both supporting and decrying the “No Gay Marriage” Amendment that has made its way onto our November ballot, and it will be hard to get a word in edgewise. 

Talk about the dis ease we carry.

I am not going to discuss the rightness or wrongness of people’s positions vis-a-vis these issues; that is not the point here.  Rather, these examples illustrate a swirling of the human collective, and it is troubling.  I have come to realize that as my own physical abilities to connect with other humans are waning daily, the ability to recognize another person’s humanity, to connect in some way that is meaningful, to engage in that which fosters growth rather than diminishment, has become more and more important to me.  How, if our humanity is the connective tissue that binds us, can we be so divided by the events that shape us? 

This is not just a philosophical question; my life quality is specifically influenced by the value of the human engagement that I am granted.

The issue is not one of recognition.  We homo sapiens don’t seem to have any trouble recognizing other humans.  But our immediate recognition is so overladen with other stuff, that human appreciation flies out the window. To paraphrase Shakespeare again, “methinks we do protest too much.”  I am overwhelmed by the dis ease of our collective humanity in these exchanges, even as I also feel my own urge to participate in the same, as if it would ease the ache I carry in my heart, or the anger in my gut.  And to what end would such participation lead me?  Do my brothers and sisters find solace, release, joy, peace in their own participation?  When I project myself into such doings, I perceive nothing but emptiness, vacuous self-congratulations with no substance, hurt and fear and manipulation and the wholesale destruction of others.  Whole industries are predicated on as much.  Whole cultures echo this noise.

What’s the alternative?

Today, I attended a funeral.  Since it was in another state, it was streamed on the internet.  Oh how I longed to physically reach out to this lovely collective rallying for the family of a beautiful young mother and pastor to their community, even as they grieved her loss.  Her life flamed like a solar flare, only visible to a certain, dis eased hemisphere.  Somehow, I came into the sphere of her influence, and today I ached with electronically mediated fingers to grasp the beauty of living where she inspired human truths of love and living and dying and laughter and grief.  But in this swirl of sorrow, came an epiphany.  This whirlwind of death and grief, lit by this beautiful soul alive to the ages to come, only dead in physical body, pointed to another way.  In a small voice that pierced my own dis ease, here came the revelation.

Humans are capable of fearless love for each other.  The funeral of a person whose Caring Bridge site was called “My Cup Runneth Over” in spite of the fact that it was possible to see her cup poured out on the ground by the ravages of cancer, pointed to the incredible human capacity we have for connections that build each other, that face the fear of living with dignity and encourage a centeredness where dis ease is only a consideration, not a rule.  It was an acknowledgement of the value of a life lived fully, conjoined with the grief of a life lived way too short.  But the capacity of the human soul is such that we can honor and live with such contradiction, if we dare.

I realize now that my swirl this week was not so much the noise of murderers and fear mongers.  It was the contrast of living until you die, with dying as you live.  And living until you die is only possible if fear and emptiness are replaced with growth and love and fostering a center where spirit shines past death and into lives and lives and lives.

I’ll take that with nuts on top.  

The Truth

In A Few Good Men, the climactic moment comes with great anticipation. Tom Cruise, playing Navy prosecutor Daniel Kaffee, demands of Colonel Nathan Jessup, played by Jack Nicholson that he divulge how the murder of a marine was deliberately ordered. Cruise yells, “I want the truth!” and Nicholson answers, “You can’t handle the truth!!” It is high drama, and it somehow reminds me of how we do conversations about dis ease. The truth is something that we all want; yet deep down we wonder whether we can handle it. How we want the truth and how we handle it is unique to each of us, and it can be confusing for lovers and friends, family and colleagues. For some, truth is a hardship, while for others it is a relief. For me, truth is an elixir, potent and tart, washing away the stale sickness of carefully maintained identity, resulting in clear self-awareness. The truth is hard and surprisingly simple, but the truth is also easy and complex. Above all in dis ease, the truth is specific, general, and impossible to predict in its course, yet inevitable in its progress.

When I first learned my diagnosis, I sought truth like a cure. I contacted the ALS Association, surfed the net (beware the YouTube videos), and looked up every medical report I could find. I joined patient forums, discovered that there are dueling associations seeking money for research, and realized quickly that truth was not in the facts. The facts of ALS were presented in a way that didn’t make sense to me. Some just didn’t add up—5000 new ALS cases per year, with a 50 % mortality rate by the third year after diagnosis, doesn’t really equal 30,000 US ALS cases at any one time. Others seemed too good to be true—a cure can be found, just send money. And then there were truths that were just plain raw—Persons with ALS (PALS) who were filmed in all their paralyzed glory, cared for by haggard, weary spouses, parents, children, friends. I trolled through these different sources like a fly-fisherman in an Idaho trout stream. And what I realized very quickly was that each source sought to portray a picture that served a purpose, and discerning the purpose was more important than understanding the actual facts that were portrayed. Each truth was a carefully constructed façade, more complex than simple, yet easily predictable if the purpose could only be gleaned.

No wonder it’s so hard to handle the truth.

What I have learned in my time with ALS is that there is TRUTH and there is truth. The capital T Truth is one that perpetuates narratives that serve another purpose. Here is an example: ALS results in the gradual loss of all motor neuron function until the person is totally paralyzed and literally trapped inside their body. There is truth in this statement. But there is also great helplessness. I can tell you that it is true that physical function slowly and inexorably goes away. I can tell you that there is a helpless feeling that goes with this, especially when you don’t feel like you are ahead of the curve. But I can also tell you that each time I discover a strategy, a technology, or an attitude that helps me handle the next loss and the next, I don’t feel helpless. I feel empowered. The small t truth of the matter is that ALS moves uniquely at its own pace in different ways in different people. I have met numerous PALS who are living well past the 3-5 years of life that the Capital T Truth diagnosis gave them, mostly because they have chosen certain ways to mitigate each new symptom. I have also met PALS who experience small t truth despair, mostly because they feel they are no longer connected with humanity in any meaningful way, or that they are a tremendous burden on their caregivers. The truth of the progression and its consequences is just not a simple Big T Truth.

On the other hand, the small t truth that I have learned from dis ease is exceedingly honest, yet quite malleable. It requires a day-to-day, sometimes even hour-to-hour gut-check to discern its presence. Somewhere in the facts of the day is the truth elixir. Here is a good example. I follow the careers of former students, and current leaders in the world of education. Their tribulations are many, and their triumphs have to be quietly celebrated—leaders mustn’t chortle out loud when things go their way. When I get the chance to have lunch or meet for coffee, when we run into each other in unlooked for places, when we just get the chance to catch up; their passion and their pain inspires me. I love the opportunity to listen to them, and I feel privileged to encourage them back to a center that is built around the children in their care. It isn’t easy to be a teacher, a principal, a superintendent, a professor. You can be 95% successful, yet the one person in your classroom that you have not reached will haunt you. As a principal, you can easily find yourself having to support policies and procedures that in another context might have made sense, but in the place you find yourself, do not work at all. It is dis ease of another kind, and I get to listen, and empathize, and encourage, and support. It is tiring, yet I am strengthened in my own dis ease negotiations by these encounters.

A dear friend commented on my last blog that honesty is a spiritual state. She wrote, “A spiritual friend is one who is honest with me, so honest that his words break through any denial or illusions and help me be in this precious moment.” Boy do I get that. When I feel the panic of my lack of leg strength, or the fear that I will have to quit driving, my naturally manufactured response is to create an illusion that everything is OK. But it isn’t OK. I have every reason to panic, and I have every reason to fear. But that truth means I’m not crazy, that I’m not making this up, and there is a quiet satisfaction in the power to recognize exactly what is going on—no schemes, no hidden purposes, no Truths with a capital T hiding facts that are cleverly portrayed to advance some specific agenda without revealing it. And as my friend says, it helps me be in the precious moment.

In all honesty, most of us have Jack Nicholson moments each and every day. It could be a white lie or an ornamentation, some Baroque rationalization for some thing we have thought or done. And we cannot handle it, so we construct capital T Truth that will allow us to remain in the game for another day. I get that. I need that. But I also know this. Meaningful living requires that truth, with all its complexity and contradiction, remain the center-point of a life well lived. I am thankful that I can discuss my truths with friends, colleagues, family. Many of you have said to me that you appreciate how open I am about my ALS. Believe me, what I gain by placing my truths of the hour into written form is both empowering and therapeutic. I am thankful you read, and I appreciate being able to express dis ease this way.

In the long run, all of us have to decide how much truth we can handle, how much truth we want. But there is a quiet center to realizing just how contextual truth is, and how bound our life happiness is in finding not so much the facts, but the truth that surrounds them. I do want the truth. But I also need to be lifted by the life that truth defines. And in this, is the honest and authentic response to the truth of dis ease.

At least if I can handle it.