Learning to Bike Again

I think I owe everyone an apology. No one needs to listen to the raw whiny voice of someone feeling sorry for himself, because he thinks life isn’t fair. Unfortunately, I asked you to put up with as much last week. Not that I don’t think I should share, but the reactions from so many of you were a tipoff that you thought I had lost my collective senses, that perhaps ALS had finally taken its measure of me, that I couldn’t take it anymore. I want you to know that this opportunity to share, to interact, to bring you a hint of understanding the process that loss creates, is my privilege. That this privilege is framed by dis ease requires a certain care in how and what and when I tell you. So much for grace in the face of dis ease! Let’s pretend the posting from last week was a mistaken draft, a cathartic dump I could have kept to myself. Instead, let’s take an underlying message, a message I have chosen to call “Learning to bike again,” and use it to move into a better place.

Understand, I know I am not able to bike anymore, but I enjoyed biking so much when I was able-bodied, that to use it as a metaphor gives me great pleasure. With the numerous losses in my physical abilities, I missed last week’s opportunity to place them in the moment, to find the place where they just the next challenge, and not life defined. Rubbing salt in this proverbial wound, on Friday, the losses that I told you about were reaffirmed at the Berman Center in my monthly drug-trial checkup. Qualitative data isn’t good enough with ALS; each month at Berman gives me a number to place on the loss. Dammit! But biking, biking is the metaphor, the memory, the methodology back to that sweet spot.

Choose an activity you really love—hiking, singing, painting, running, cards—something that challenges you to accept the pleasant with the unpleasant, the good with the bad. As each one of us carries our own dis ease, that activity can come to symbolize the way of the dis ease we carry, and more importantly the learning we bring to its handling. I choose biking. When I was younger, I could bike miles and miles with very little specialized equipment and hardly any planning. As I grew older, I found biking to be far more enjoyable as I invested in bike clothing, bike tools, and of course two good bikes—one for the road and one for commuting. Biking taught me that cunning and good technology could make up for losses in musculature and oxygen metabolization. Biking taught me that even though I noticed slight losses in my physical capacity over time, I was able to compensate for these losses with different technology, different preparation, different repair techniques. It isn’t so different now with dis ease. As in biking, I recognize the necessity of staying in front of the needs as they present themselves at the speed of ALS.

I must learn to ride a bike all over again.

This new space recreates old space—where eating and drinking are planned activities, the technology of the wheelchair is essential to basic bodily functions, a microphone is good for a crowd or a noisy car, driving is for others, and Ev swings my legs into bed. In terms of biking, it is only learning to ride again, finding the balance over a new frame, getting used to new shifters, testing different brakes and especially, knowing I will have to learn biking over and over. Don’t be afraid.

In the fear inspired by ALS, I fear I have not acknowledged the dis ease that each one of us carries. I fear I have diminished the humanness I have been so privileged to witness with so many of you. I fear I have forgotten to acknowledge the parallels of ALS and the human condition. I fear I have been less of a friend than I should have been. In the fear is the whining. The aging process with ALS moves quickly, far more quickly than the old normal existence I assumed for me and now for each of you. Such assumption is not fair. So many of you have been kind enough to share your own dis ease moments, underscoring similarities based in the increasing complexity of living with these bodies as we age.

I want you to know I am sorry for not listening. In learning to ride the bike again, there is a center shared in the moment it happens and epiphanies abound.

Six weeks ago I stopped driving – I mustn’t live there. Four weeks ago I upped my home care – I mustn’t live there. Two weeks ago I had to ask that certain foods be cut into bite-size pieces for me – I mustn’t live there. I sleep more – I mustn’t live there. I use a lift for showering – I mustn’t live there. I can only stand for a few seconds – I mustn’t live there.

Tomorrow will bring another loss – I will not live there. Next week will bring new grief – I will not live there. In mere months, work will overwhelm desire – I will not live there. Future loss screams consistently about future loss – I will not live there.

Now comes the moment of the quiet center.

The quiet center is learning to bike again. Each time my balance on two wheels is compromised, a new opportunity to change riding technique arises. If I stay right here on my bike it doesn’t scare me. Instead, it looks like fun, a new challenge, a new hill to push through, a new distance to attain. The quiet center reflects the discipline of the moment, neither where I used to live nor where my future lies. It is adding a new gear to my derailleur, losing weight from my wheels, adding carbon or titanium or steel to the frame, switching out the drivetrain. It is riding in the rain, the cold, the heat, the humidity. The quiet center is this body as it is – not what it was, not what it will be – unable, yet still able.

The quiet center is the privilege of connection—to reach and be reached, to support and be supported, to give and take.

Dis ease has taught me to have faith even when faith seems silly. Last evening, with my sisters-in-law, brother-in-law, niece, nephew, son and (God I hope) daughter-in-law, Ev and I enjoyed good food, good conversation, family and family and family. My son David grilled beautifully, and all of us loved the eating. I think you can have faith in such times. I believe it’s indicative of the faith that makes life so spiritual. It is just getting back on the bike after a terrific fall, and finishing the stage.

Yea, though I roll through the valley of death…

So again, accept my apology and don’t worry too much. I’m still too old to rock ‘n roll and too young to die, and somehow or another, I will get my leg over this new bike, given by the grace of ALS, teaching me over and over again that training wheels are unnecessary and balance is just a state of being.

Whoosh!

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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.

Say It Ain’t So, Joe

If you have been reading closely, you might have discerned my skepticism of individualism; the idea that the end-all and be-all for determining the goodness of any course of action should be based upon what is first good for the individual. As much as I believe in individual potential, I cannot help but feel that there must be a balance between the one and the many, the person and the people, I and us. Individualism taken too far has no room for compassion, and has no patience for regret. While our culture tends to see a “No regrets” life as extremely desirable, I cannot help but think that without some sense of regret, there is no opportunity to grow beyond one’s current state. “No regrets” is a recipe for walking-death, calcification of capacity and capability. I cannot imagine having no regrets. I cannot imagine a life where regrets–both of commission where one actually does something they would take back, and of omission where we should have done something but did not–were not front and center as major shaping experiences of the persons we are. In regret is realization, and my teacher, friend and constant companion ALS, sharpens regret’s realizations so that omission dully aches and commission recognizes that there isn’t any time to make the same mistake again. Dis ease points to regret and tells you that there is no going back.

Regret is strong on my mind this week, because I have, in spite of my best intentions, paid such close attention to the scandal surrounding Penn State University, its football program, and most particularly the former coach Joe Paterno. The story could have been written by Euripides, for no matter how wise or wizened the person, there is always an opportunity to commit a mammoth mistake, to turn our backs on something that we clearly have to know is happening, and to instead try to cover up our failure through the inappropriate exercise of power, influence, or otherwise. It is the nature of life that the greater the legacy, the more there is to lose. Such is the case for this proud University and the enigmatic Joe Pa with the realization that its great narrative–that good guys can really be good guys–must be revised.

In the past months, Paterno’s legacy as one of the good guys in Division I college sports has tumbled down a rabbit hole of his own making. Since the scandal came to light that Assistant Football Coach Jerry Sandusky used his position and his Second Mile charity to “groom” boy victims for the most lurid and disgusting criminal sexual activity imaginable, Paterno’s bequest to the legacy of his university and football program has plummeted from a pinnacle where ethical and successful are not mutually exclusive; to a middle ledge of recognition that the coach committed sins of omission—he didn’t report and he didn’t follow up; to the bottom feeding realization of callous commission—Paterno knew what was going on and actually interfered in the investigation of his minion. To salt the wound even more, we have learned that Paterno sought an exit contract of great advantage, even while the outline of this horrible story was coming to light and he was being called to testify in front of a grand jury.

When focused only on the situation, the cover-up, the lies, the lack of responsibility and the documented hyper-concern for public relations fallout rather than the harm inflicted on so many young children, it is hard to see this situation as anything but horrific. But for me, there is a huge lesson here, one that relates directly with what I have learned from dis ease about regret. That lesson has to do with transparency, honesty, and the ability to name something for what it is, to speak truth in the face of power, to hear even when you don’t like the message. In a way this scandal goes beyond Paterno, and is instead about the fact that each one of us will face the choice to be forthcoming, to admit that which we regret, or to regret for the rest of our lives that in our lack of honesty came more harm, hurt, pain. In this fact is that small kernel of hope that I hold.

Nothing justifies Sandusky’s behavior and Paterno’s cover-up. Paterno and the University Powers were scared and rightly so. Our gotcha culture should frighten the most honest among us. It offers very little payoff in telling the truth. Admit a mistake and you will be portrayed as mistaken; admit to regrets and gotcha will make you truly regret it. The cycle feeds upon itself until it becomes so harmful, so lurid, so unreal that it is impossible for the person in the moment to see any way out except through obfuscation or suicide or stupidity. These powerful men were frightened of the consequences, and I think that is the point. The realization that you will suffer the direst consequences for honest, transparent communication about the worst thing possible happening, is something in which you can have faith, and whether or not you have stepped forward in truth speaks reams about your strength and faith and character.

Consider, in 1998, had Joe Paterno and Penn State University confronted Jerry Sandusky, reported him to the authorities, come clean about the implications that something like this could take place right under their noses; and then used the power that only a Research One Land Grant University possesses to build a center dedicated to the prevention of such heinous abuse, we would now see Paterno’s confused legacy much differently. Instead, he missed the opportunity to confront a terrible wrong in his program, root it out and insist that the university dedicate itself to providing leadership in child abuse’s prevention. The regrets that those responsible for leading the Penn State community must currently feel should be immeasurable. That such an opportunity was not seized at the time, and that only now in calling out the outrageous hubris of institutional fear and corruption is there any talk of honesty and healing, is beyond regrettable.

In the end, there is no hiding the truth. The more that I live, the more I keep relearning that the things that I do will almost always come to light, and the things that I could have done will become obvious over time. As I lose more and more physical function, I have also learned that the things I cannot do–there is no hiding the physical regression of ALS and the consequences of a dis eased existence—have their own eventual grace. And in such grace is love, blessing, faith, hope, the realization that love unexpressed is love unrequited.

Or, you can in the words of Pink Floyd, “…exchange a walk-on part in the war for a lead role in the cage.”

Each one of us is granted the opportunity to reach past our regrets, our fears, our pride, and try to make things right, even if our attempts are rejected. Dis ease teaches that such legacy, framed by our care and not by our fear, is far more blessed than the embarrassment and humiliation at the time. I know that honesty requires courage. I know that courage requires transparency. I know that not everyone can handle such openness. But I also know that if something good is to grow from something bad, then it begins with light and sun and fresh air and truth.

And then, I think it might be reasonable to say, “No regrets,” both individually and collectively.

Nine Days in Italy

For nine days, Ev has been in Italy.  If you are looking for a tome on love unrequited or on just how long nine days can be; that isn’t going to be this little musing.  There are some things I choose to keep only for me, and while it may be clear that I miss Ev, I will spare you such prose.  But there is so much that has happened in the past nine days, such material, and yes such memory.  Travel has always been a priority, so the fact that she is in Italy and I am not, should tell you something, for such travel is probably beyond me now. And reflecting on our travels together, or on the fact that I am not with her is a new moment in dis ease for both of us, one that we anticipated, but never fully grasped.

There is an anticipation and preparation for travel that can be every bit as enjoyable as the travel itself.  The time leading up to that moment on the plane, the boat, the train, the car is both anxious and sublime.  When we first began to travel, we didn’t know how lovely the anticipation could be.  Even now, it is easy to lose that sweet perspective, even when you have the experience of preparation many, many times over.  And knowing how the anticipation works was not something that was easily learned.  Over time, I came to appreciate the joy of planning, of shaping a framework but not too much for the upcoming journey, because travel always reshapes the framework imposed upon it.  One of the things that travel taught us was that no matter how careful the plan, how detailed the itinerary, there would always need to be times of improvisation to account for the unanticipated reality of plans gone awry.  Some of the best experiences we ever had came from these moments, and some of the most frustrating.  The sweetness of dreaming the anticipation was that in the plan, everything worked. The joy of the travel was that it didn’t.  

And over time, we got better and better at anticipating the things that might go wrong, and the things that might not.  Our first transatlantic flight was the leap of faith that brought us, young in our marriage and with a 14 month old baby in tow, to Norway.  God what we didn’t know.  Poor David cried the entire trip (yes, we were that family on the plane).  I am now convinced that he was reflecting the anxiety of his young parents leaving everything we knew, like a mirror on our souls.  While it was always challenging to travel with young kids, it was never like this again.  We learned to reflect pre-travel anxiety only to each other, to plan for his  (and later Jon’s) needs, and trust that aside from the occasional incident–for example, once in Copenhagen, Jon managed to pull a computer down on his head at the check-in counter so SAS staff rushed him into the city proper for stitches and delivered Ev and the two boys directly to the plane just in time for takeoff–things generally worked out.  Travel teaches you to pack light with an extra pair of underwear in your carryon, knowing that in the most uneven grottiness of unwashed bodies for days on end, some evenness can be achieved.  This was always part of the beauty of travel, for we learned that in some way, we would get things back to some sense of stasis, some semblance of normalcy, some comfort level with which we could live.  Such knowledge is helpful in a storm.  

I don’t want you to think it was all challenging; some of the travel we have done has been sublime.  I still count our last weeks in Egypt, of which we spent 7 days camping on a beach on the Red Sea, as one of the most wonderful weeks of my life.  We undulated between watching satellites and shooting stars by night, and by day, snorkeling in the vast beauty of Red Sea coral, Napolean wrasses, parrot fish, angel fish, dolphins cresting, and remarkably dangerous animals–lion fish and sea snakes–warning us to be respectful.  Eating, sleeping, bathing, talking, laughing in this wonderland of incredible beauty with the desert all around us and the sea beside us, was a time I will never forget.  We were with friends on the beach, friends who had done this many, many times before.  And they guided us in so many ways, both in how friends spend a week uninterrupted together as well as what to see and how to protect ourselves from the relentless sun that illuminated occasional awkward moments.  Such is the height of friendship.

And some of the travel was remarkably affirming.  When we flew to Bali from Minneapolis for the first time, the comedy of errors that was both the flight to and from Denpasar would have knocked the most seasoned adventurer for a loop.  We took it in stride and became smitten, enamored of this remarkable island.  Bali is a place that teaches the importance of place, for every Balinesian that we have met needs direct communion with the terra firma that this island is, knowing that spirits and ancestors are just under the stones in the yard of your birth.  And we learned this lesson, that a sense of place centers us, even when place cannot be perceived.  Bali has changed enormously in the last 15 years, and though we have returned twice to experience its beauty and culture, nothing will equal the excitement of our first trip there when so much went wrong, and ancestry and culture and center and place were introduced in a way that we had never before perceived.  This is why we go to places we have never been.  The vistas that were opened to us required an engagement with the world at a level that always asked for more until there wasn’t anything left to give, and yet we always returned.

I’d bet at this point, you are thinking that I am going to point out the vast parallels between travel and dis ease.  I could, I really could.  

The anticipation and acceptance of diagnosis and treatment, the need to roll with the setbacks and celebrate the affirmations, the challenges that require a stitch or two, the new experiences that teach in a way you’d never learn if you remained in the same place, the inner vistas that are opened up and the old knowledge that becomes strangely irrelevant in the new contexts; all of this parallels the dis ease journey.  Yet, the parallels are of less relevance to me than the vast differences.  ALS is an 18th century island penal colony at the end of the world.  Once you are on that ship, there is no going back, no stasis to center the journey’s cadences, no return to the home from which you set forth even if you are optimistic about the direction.  There is nothing in my experience that is like this dis ease experience,  for everything I learned from travel is so inadequate to this peculiar journey.  It is nothing that underwear in your carryon will handle, and the grottiness of its effects are never undone.

I hear the musings of my brothers and sisters in dis eased arms, and I can tell you that even those in so-called remission never quite feel clean.

One year ago, we were preparing for what I knew in my heart would be our farewell tour to favorite spots in the world, Thailand and Bali.  Now, Ev continues on, bringing home her experiences for both of us to savor.  A year ago, we prepared for new experiences that would solidify into mutual memory of taking on the world on its terms, holding hands and facing forward.  Now, I am thankful for the flow in and out of travel memories sweet and tough and frustrating and soulfully open to a constantly shifting reality; no stone foundations in this space.  Instead of plotting the next adventure, I have homecare coming in twice a day to help me dress, eat, keep the place picked up and sit close by in case I cannot get up from the shower.  My plans cannot push beyond ensuring the basics.  I miss Ev, and I miss travel, and out of that comes new learning that can only be framed by the dis ease of this moment.

Ev is traveling for the two of us.  She moves our adventure forward into new places, and so do I.  She must learn to keep on keeping on without me physically present, and for that I grieve.  But a death lived fully must continue to take on the tourist challenges of taxies in Rome and the Alitalia way of doing lost luggage.  And I continue with her.  

I am there, honest–I am there.

 

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.