The Look

Don’t be frightened, but I need to ground my weekly thoughts in the fact that we have just celebrated the holy weeks of Christianity and Judaism. Depending on your persuasion, Holy Week is about liberation, either from Pharaoh or from death. It is about a new normal, when the old normal was so crushing. And I cannot help but think of a line from Malcolm Dalglish’s musical setting of Wendell Berry’s poetry–Hymnody of Earth: “And we pray not for new earth and heaven, but to be quiet in heart, and in eye clear.” The line really speaks to me, not so much due to the new earth and heaven part, but mostly because of the “eye clear.” There is a phenomenon of eyes of which I am much more aware, partly due to how I perceive others’ way of seeing me, and partly out of anticipation of the role of the eyes in the latter stages of ALS. I prepare, admittedly at the beginning of my journey, and I find myself paying attention to look, sight, vision, eyes. I am learning new spiritual sight from the holy experience of ALS. The experience of current disability and the anticipation of further disability is a vision to behold and to cherish, although it may not seem so to the able bodied.

The Disability Community often refers to the able bodied population as TABs—Temporarily Able Bodied. They know just how fleeting the able bodied existence really is, and all of us know that able-bodied folks don’t like being reminded of that fact. Probably, I shouldn’t speak for others in terms of the TAB moniker, but I sure tried to deny my own TAB quality, and in my denial was sight without seeing, vision without clarity and frankly a dullness of eye that I have come to call, “The Look.” You may or may not know what “The Look” is, but if you imagine me as I am now, shuffling along, ankle-foot orthotic on my left foot with a probable need for another on the right, cane in hand, slow in and out of chairs, a little unsteady, especially when I am fatigued, you might give “The Look” without even knowing it.  “The Look” is a way of seeing without seeing.

Here is a story. A couple of weeks ago, I tottered my way down the skyway to get a slab of the local New York style pizza–a real slab of pizza. This is a place where I only eat once in a blue moon, mostly because the lines are long, and a little because the pieces are hugely caloric. Anyway, I got into the line behind a guy in a motorized wheelchair. He ordered, got his two pieces (yup, two) and a bottle of Dasani and went to the back to eat. When I struggled to the back, three items in two hands plus a cane, I put my stuff down (which was no easy task), sat and immediately realized, no napkin. I got back up to get a napkin and looked over at the guy in the wheelchair. So did half the restaurant. The guy had arthritic hands, grease from the pizza running down them and no napkins. How can you not see that? Just like you cannot see a guy trying to balance three objects in two hands, that is how. I offered to get napkins for him, and he gratefully said, “thanks, and do you think you could open my water for me?”

That story is “The Look.” We see things. We see the guy on crutches, on a cane, the woman in a wheelchair. But “The Look” goes right through them. We are afraid to acknowledge their disabled regalia, how they struggle, walk without balance, or don’t have a free hand when one is needed. I don’t mean everybody. That wouldn’t be fair. I’ve had people hold the door for me as often as they have pushed right through it just fast enough for the door to close in my face. It is probably too easy to just give “The Look,” and I must admit it to you, I know this from experience. In my old normal, I gave “The Look” as often as I didn’t, secure and confident in my able-bodiedness. I know how good I was at “The Look.” I’d look right through disability, and I wouldn’t have to face its possibility in the person that I’d looked through.

If you have been reading my blog, you know that often there is a moral to the stories I tell, and you probably think that “The Look” has to do with not feeling confident in the future of your able body. At the very least, it ought to be something about being kind to us crippled folk (As an aside, I’ve never had a disabled person not return a greeting or acknowledgment of presence, in case you are afraid of being misperceived). But there is no moral so easily grasped here except the moral of paying attention to the moments at hand. It makes me want to look again and again, beyond my past and into this future life that defines the experience of dis ease, and it makes me want to tell you of this gift that awaits us all.

Remember when I said not to get nervous, even though I was going to reference the Holy Week of Christians and Jews? Well you can get nervous now, because I am going to reference the Buddha as well, a three-fer. The Buddha tells us, “Life is dukkha, suffering.” My take away? Get over it, but don’t ignore it. Wendell Berry writes that we go into “a maze of a design that life can follow but not know.” To me, this maze has so many twists and turns. You can follow the money, the things, the stuff.  You can follow the religious, the sacred, the rituals. You can place your treasure in a healthy body.  All of these paths hold a truth–life is suffering, born out of our desires that circle back upon us in ways that ultimately increase our pain. All seem to me to be worthy, and all seem hollow at the same time. I think you can boil it down to clarity of sight.

One of the promises of ALS is the eyes. Even though they are voluntary muscles, for some reason, the vast, overwhelming majority of PALS’ eyes remain under control even when all else is gone. There is a whole “eye glance” technology that aids communication after speech is lost. And I find this somehow comforting as I come to terms with “The Look.” I prayed for a quiet heart, and a clear eye.  I find these in the looks of my friends, my family, and the future eyes of ALS.  Who would have thought that the eyes of one ravaged by dis ease could be so powerful, in spite of the physical loss? The full line from Wendell Berry is this: “I go amazed into the maze of a design that life can follow but not know.” I admit it. I’m amazed by what I never saw before. And if you don’t believe me, look it up. It is as liberating as beating the Pharaoh, or life over death!

Yours in ALS,

Bruce

Topsy Turvey

It is a lovely sunny Sunday, the kind of day that brings Minnesotans out in droves even though the temperature is below 50 degrees. It is the kind of day that would have had me out biking, walking the lake or just working in the yard in my former body.  It is the kind of day that reminds me why I am in love with Minnesota–fresh air, outdoor people, exercise and taking the time to pay yourself to make life good. It might snow later this week, but get out and get some sun while the getting is good.  It puts me in such a great state of mind, anticipating the spring to come.  There is new life of the season struggling through the chill in the air.  Just two days ago, we awoke to an inch of slush.  Today, to see the dogs, the people, the bikes, babes in their Burleighs and kids on third wheels–I can’t help myself.  I just feel a bike ride coming with the wind in my face and the road so close, I can smell the heat off the asphalt.  Everything is telling me to get ready for the spring that is coming, everything except for my new normal of dis ease in the form of ALS.

Before you feel sorry for me, understand that your sympathy is not why I am writing.  Sympathy, for the most part, is overrated.  I’m just trying to let you in on the experience of what it feels like to age faster than a speeding bullet.  I think I find my current state to be complicated, because in my old normal, I took good care of myself.  I was active, careful about my eating. I restricted the bad things within reason (you know I like to drink a beer or two), and I worked hard to put the good things around my body (except maybe getting enough sleep).  So it is a little bewildering, believe me. I won’t tell you my past BP or heartrate, my cholesterol, or my oxygen metabolism percentile. That body was a great body, and it kept me feeling centered and happy, because I kept it centered and happy.

We are told that there is a health pathway we put ourselves upon that affects our physical and mental well being, and I think this is true. I still believe that statistically, people who take care of themselves have a better chance for a healthy life. With my old normal, I felt pretty good. My head and my heart were in good shape. I could handle (mostly) the stresses of life and knew enough to get out there and exercise when I felt my worst. And for all the statistics, I guess that I have to remember that whatever is in the great big center of a bell shaped curve, there are outliers that deny the correlations. The lesson here is not about statistics, outliers or correlations. In fact, I don’t think there is a “lesson” here at all, although God knows I look for meaning in the comparison of before and after ALS diagnosis. At the very least, the assumptions of before need to be modified for the realities of after.

This past week, I took my name off of Ev’s and my dual YMCA membership. I just couldn’t justify the cost any more.  In my new world, exercise is something that takes energy, but it doesn’t build energy capacity.  It is one more papercut, forcing me to continue to discern and rediscern my new reality, and to learn and relearn that the grieving process is one that spirals over and over again.  Some of you have said to me that you are impressed with my grace in this process.  I thank you for the observation, but make no mistake about it, I’m pissed.  I go forward at the speed of ALS, but if I could see a positive outcome for kicking and screaming, I’d do it. I’ve chosen not to use fighting or battling as ways to characterize my relationship with dis ease, partly because it would feel like I was fighting myself.  And in a way that is what this process is all about.  As we crawl, run or ride toward our own sunsets, each one of us inexorably fights to hold what makes life so fascinating, so interesting, so beautiful, and so absolutely humanly imperfect.

Listen, in the great Minnesotan North, Spring is coming.  In spite of the forecast of snow, Spring is coming.  And in the beautiful sun of a cold April day, I guess I need to find my new normal Spring—what it means to feel my blood quicken without quickened fatigue, and what it means to follow my Minnesota sense of catching some rays, even when it is 45 and windy.  There is nothing like the rebirth of our Mother, and there is nothing like joining the Spring chorus.  I think this is the meaning I’m looking to own.  As my legs go, more important things emerge—love, life, joy, grief, and spirit.  There is nothing like rebirth and growth, even when it isn’t physical.  Spring is coming, and it walks, runs and rides me down an emotional pathway that parallels the physical activity of my old normal.  That’s what I’ve got.  In spite of resisting the lesson, that is what I glean.  Some lesson, huh?

There is a line in Mason Jennings’ (a Minnesotan by choice, by the way) song “The Field,” and it gets me every time.  “I don’t want no victory, I just want you back.”  The song is about losing a child to a desert war, but the line out of context, before I ever figured out the rest of the song’s lyrics, amply gives voice to the gut feeling I carry.  I don’t need a medical victory.  I just want a life lived.  My new life is a road I thought I was avoiding by the way I lived my old life.  But, I know there is no avoiding it.

Maybe I will still get in a bike ride, catch a tailwind, and hit 30 mph before it is all said and done.  Or maybe I will not.  “I don’t want no victory…I just want you back.”

Yours in ALS,

Bruce

Facing the Music

Dear Friends,

This past week was tough. We made the turn back from Korea on Sunday (don’t get me started on the TSA’s incompetence at O’Hare), and we dove back into Central Standard Time with a vengeance. With an ALS research presentation on Tuesday night, and a program on college readiness sponsored by my university at the Minneapolis Urban League, I’ve been sucking air all week. And in spite of my efforts to try to stay ahead, it has definitely been a week where behind has been the name of the game. Everyone has heard the saying, “Time to face the music,” and in a weird kind of way, I found myself, particularly in these evening events, to be facing my own new tunes of dis ease. But I have to tell you, that these new songs are just not that well written, and they could use some improvement.

Let me start with the ALS research presentation by ALS Therapy Development Institute (ALS TDI). I wasn’t expecting much, and on some levels, I wasn’t disappointed. It would be so nice to report that a cure is imminent, that drug therapies beyond Riluzole are available, and that everyone in the ALS world is working with everyone else to find some meaningful treatments for this syndrome. Unfortunately, this I cannot do. While the TDI model is quite impressive, it is a small piece of a little pie. Their yearly budget is 10 million dollars, and they seem to squeeze a lot out of that small amount. They maximaze their dollars through focus.  They aren’t interested in cause, nor are they interested in palliative care. They are only interested in developing treatments that will manage this dis ease.

Significantly, there was no one at this meeting from the ALS Association, one of the big dogs in ALS research and care. When I asked why, here was the answer:  “We are all vying for the same resources, and we just don’t seem to work together in this endeavor.” It is unfortunate, but the way of research and research funding in a capitalist society is about who gets attention, and who can out-compete the other. And rather than one concerted effort, organized from cause, to treatment, to palliative care, to cure, there is effort against effort, with little coordination. I admit, it was depressing, but it also offered clarity.

As most of you know, I am a musician, a choral musician to be precise. Oh how I miss my choral life, with singers striving for that beautiful moment when the phrasing is just right, when the energy of the line sings from your soul, and when there is just a fleeting moment when the face of God appears and light shines in the room. I miss the joy of singing from the same place on the same page, of knowing that even though our voices are different, when we join them together, we achieve a unity that satisfies our humanness. I miss the challenges of music–that even though the way to sublime beauty might be fraught with technical and aesthetic difficulty, initially beyond our capacity, together we can move beyond our own limited visions of ourselves, and collectively achieve a beauty that lifts our spirits way above our limited individual perceptions of our own capability. For me, music represents how to pull the very best out of this human experience, not in competition with other musicians, but in the spirit that just because we have glimpsed beauty from one choir, does not mean that there isn’t space for beauty from another and another and another.  Beautiful music does not work well in a deficits model, and this part of my life speaks to me about the way that we do dis ease in the history of the world, part 1.

In the politics of dis ease, we believe that if different groups “compete” for scarce resources, then they will hone their research to be better, more effective. So the system is set up to say, “what is mine is mine, and what is yours, I want.” There is an underlying belief that winning a grant for research means that losing a grant will weed out the less worthy, the less capable, and that we will progress to success due to the competitive nature of research. I don’t deny that such a system encourages some forms of highly effective research. But my experience with my “orphan dis ease,” so called due to its rarity of diagnosis and treatment, really points out how a purely scientific approach, specifically the approach encouraged by our national research policy and realized by the big pharmaceuticals, misses opportunities for development and treatment that could yield meaningful effects.

The current state of affairs is a cacophony. It is like telling the choir, “some of you sing from page 3, and some of you sing from page 8, and I am sure we will find a unity in the music at some point.” If I could offer an alternative, it would be to make the aesthetics of dis ease just as important as the science. We would systemically encourage groups to work together, to maximize research through unified models across the board, to realize that the scarce resource model is actually a model that encourages scarcity due to its insistence on losers. And frankly, shifting our approach would maximize resources in the long run.

Most of the time, when I sit down to write this blog, I’m not quite sure where it is going. I try to select something that seems significant to me in the week, and then peel up the carpet underneath it to see what the real meaning is. I think all of you know that writing is very therapeutic for me, and I hope that you don’t see this as whining (although there is probably some element of whining in it). As I go ever deeper into this process of dis ease, I have become more and more aware of the fact that our models are just as responsible for our outcomes as the dis ease itself. ALS is stubborn, brutal in the fact that in the 150 years that we have formally known the syndrome, science has yielded only one approved drug for treatment. And of course, I’ve got a dog in this hunt. I so want the research efforts to work and to yield good results. As a musician, having been a part of great musical performances, and (I hate to admit it) music that was not so good, I know that the difference, once you have accounted for rehearsal time, is miniscule. Invariably, the difference has come down to getting on the same page and solving the technical and aesthetic challenges in a systemic and unified way.

As I face my new music, I cannot help myself but hope that dis ease might find the same unity that is so necessary in the arts. I’ve always been a hopeful person, and right now my deepest hope is that the orphans will find the beauty in a unified vision that values a lot of different voices singing the same song. Now that is a tune I could sing, and I’d bet that ALS would yield to its beauty.

Yours in ALS,

Bruce

The Road Not Taken

Almost everyone who has attended a high school graduation has, at some point heard Robert Frost’s poem, The Road Not Taken.” It begins, “Two roads diverged in a yellow wood, and sorry I could not travel both…” Three strophes later, Frost states that what has made the difference is that the traveler took the road less traveled, not the one that showed the wear of constant use. Frost’s poem implies that we can go one way or another,  either-or, the road more traveled or the road less, and I’m mindful of that poem as I return from visiting our son and his girlfriend in Korea.  From our trip, I realize that traveling and dis ease have much in common that perhaps belies the forced choice the poem suggests.

Travel teaches things that are not as obvious anywhere else, and frankly it is one of my favorite things to do. When Ev and I travel, it is a tightrope act. Especially, we love to plunge into a culture of which we know little, and to grow as much from our ignorance, mistakes, and just plain cultural klutziness as possible. Usually, we follow Frost’s advice, forswearing the typical protections of most travelers. We drive where others bus, we stay in places where westerners cannot be found for miles, we head down alleys instead of main streets, we deliberately get sweaty, dirty, and just up to our elbows in the locale. We delight in breathing in these new spaces as we experience a gut-level, highwire that leaves us with that jubilant feeling in the stomach—part fear, part breathless, part stress, part sheer joy. And coming home to the consistent, known and stable (and the kitties) is just that much sweeter after the high emotion of travel.

Dis ease is a lot like travel, only we don’t actively seek it out. It is a paradoxical experience of consistent grounding and tightrope walking with your heart in your throat, and possible calamity just around the corner. The new normal of ALS grounds me, my friends and my family into a gut-level experience that is part grief, part grease lump in the stomach, part denial, part full realization. Like travel, it puts me on a roller coaster with a thrill of discovery, new sights, sounds and smells, but without the payoff of returning to the old normal of home in the scope of a plane ride. But dis ease and travel are surprisingly similar, and they came together for me in our trip to Korea.

Jet lag has always affected me harder than Ev, and the 14 hour time difference between Korea and the States was particularly difficult. When I am jet lagged, I often will dream vividly, and my first night in Seoul was no different. It gave me what I have come to call an ALS dream. ALS dreams are usually about some part of dis ease that I am struggling with in my waking hours, for example–the next papercut and its inevitable denial–and they range from the surreal to the highly realistic. My first night in Korea, I dreamed that the pressurized cabin of a trans-pacific flight had cured me of my dis ease! So sweet, so hopeful. No more ALS. All I had to do was get on a plane and leave the ALS dis ease behind me. And there was more in this “cure” than met the eye, for suddenly, the greasy congealed lump in my gut that I guess I have gotten used to in the grounded highwire of ALS, was gone as well.

I now realize that it is in my gut where dis ease really abides. Part grief, part physical byproduct, always present, my dream not only cured me of the ALS, but of the stuff I have been carrying as well. I could let go of the hole in my gut that represents my fears of the next step and the next and the next. I awoke, happy and thoroughly rested, with my ALS new normal gone. What an incredible feeling!  And of course, all I had to do was swing my legs out of bed to realize that dreams are only dreams. I stood myself up only to find that my foot dragged, my arms and gut and back twitched, and that was that. Cruel, eh? But I received a respite, if only for a moment, and it was energizing. And this is where I have new knowledge–that the highwire road less traveled and the old normal are not mutually exclusive, nor can they be.

In a way, our lives have become heavily dependent upon reducing the tightrope act, because with dis ease, our hearts are always in our throats. I knew this in my head as we prepared for Korea, but the dream showed me a road I need to travel, one that is both a higher tightrope and a less risky avenue. I need that respite from the gut stuff, because it is as debilitating as dis ease. I need to try to plan to stay ahead of what is happening, what is coming. But I also need to be allowed to be “old normal” where I can, walking the highwire of growth, newness, and humor that comes with diving into the experience. Ironically, ALS has become the grounding (in so many different meanings of the word) that defines the new normal. Old normal comes to me in the joy of friends, the glances of my lover, the pressures of my work, the adult growth of my kids, the learning of my teaching. New normal and old normal are not separate–they inform each other, just like a delicious dream of the curative properties of pressurized cabins offers respite. I’m grounded on the highwire, and what was once thrill, is now the respite.

Travel is as much a part of me as any body part. I’ve always loved it precisely because you end up living on the edge, in spite of how well prepared you are. Paradoxically, for Ev and me, our friends and family, colleagues and others, ALS brings us to the fork in the road where before, we would have chosen the road less traveled, but now we choose the roads we have traveled less. We have to care about the grief we carry, and we have to carry the grief for each other so that we are not so thoroughly buried by our new grounding, that we cannot get up off the ground.  ALS insists on a less energetic interlocution with the world. With this trip to Korea, we recognized a new way to travel–less breathless, more protected, more traditional.  We became cognizant of the energy it requires to accomplish the next learning, knowing full well that we cannot predict everything to come, even with great foresight and planning.

Frost identified the condition correctly:  “Two roads diverged in a wood.”  But dis ease means that you don’t get the privilege of traveling one or the other. “Two roads diverged in a wood and I, I took the one…”  that I found myself upon.  It is the way of dis ease, but more importantly, it is the way of life.  Take that Robert Frost!