The Tell

With the first diagnosis of ALS, Ev and I realized that our new status would be both comforting and overwhelming to our friends, family and colleagues. We knew we had to share our news, and in that knowledge, we kind of stumbled into a space that I came to call “The Tell.” The Tell was both planful and spontaneous, sometimes because we set it up so that close friends could share intimately, and other times because it just happened. That experience continues today, as both of us still have circles that are unaware of our new normal. I still run into people who see me with a cane and ask, “What did you do?” Invariably, my first statement is, “I didn’t do anything,” but I am left with the decision of The Tell, knowing how odd the person will feel if I go on to reveal why I am on a cane, and knowing how odd I will feel if I just leave it up in the air.

I’ve been trying to figure out how to write about The Tell for a long time, partly because it is so seminal to my dis ease experience, and partly because I am afraid that I won’t do it the justice it deserves. “Tell” is a distinctive word. As English speakers we usually associate it with its narrative definition. This verb form is key to what I want to discuss today, but there is also an archaeological definition that offers insights into the word. In the Middle East, a Tell is a mound containing layers of civilization, one built over the other. The noun illuminates the dis ease experience, as each of us grows to become layer upon layer of events and knowledge, unease and dis ease and comfort and joy built one upon the other. Our private archaeology mixes relics with relics, up and down the strata of our psyches. It is what makes us so complex and unique, so beautiful and dangerous.

So Ev and I constructed our version of The Tell. At first, I think we expected The Tell to be about our own grief and shock, and to a point it was. But what I soon realized was that news like, “I have been diagnosed with ALS,” spawns an incredible range of reactions, and the dis ease experience is not just in the teller, but also in the told. I learned quickly that there was no comfort and great comfort in telling. I learned that the profound sense of truth that I owned in my diagnosis had no bearing on the ways that friends and family reacted. Some responded with denial, others with anger. Some expressed hope, and others quiet acceptance. The presentation of our vulnerability and dis ease inspired human expression that ranged from the holy to the profane. As we shared our dis ease, we became conscious of how many of our friends, family and colleagues carried their own dis ease as well.

This is where the archaeology of The Tell comes in, for it seems to me that each of us is like those Middle Eastern mounds–once you dig past the top layer, long buried and hidden life artifacts become apparent. Some of those artifacts are pure joy, and some are horrifying. What we learned to expect was that sharing our dis ease invited others to share theirs. Since my diagnosis, I have heard stories of terminal illness, broken relationships, physical and psychological assault, hopeless addiction, flat out discrimination, physical challenge, abuse—dis ease that represented life loss and life hope dashed or realized. There have been many dis ease story tellers. Some would qualify their experiences, “I know that this doesn’t measure up to ALS,” while others would tell me stories that made my dis ease feel like I had dodged an atomic bomb. I always understood that we humans carry our past and present pains and joys, as well as our future hopes and fears, just underneath the veneer that we present to the outside world. I just didn’t realize how present those pains and joys were. Truly, it has been like traversing an archaeological dig, with each Tell illuminating a personal story and the human condition. It has been a gift of privilege and healing.

There exist institutions, specific to different kinds of dis ease that help people to tell—Alcoholics Anonymous for example. I have discovered my own institutions through the internet forums built for my brothers and sisters in ALS. These places are raw, and yet they heal. They often predict the course of dis ease, but they also offer ability in the face of breakdown. In these places, The Tell is not abstract, but achingly human. Often, I see inspiration and despair in the same sentence, uttered by voices already taken, and here is one of the things that is profoundly touching. Those that can find a way back from the normal brink of sadness and grief invariably talk about a friend, a partner, a lover, a family, a colleague that continues to embrace them in spite of their emotional or physical condition. Those that spiral into despair believe they are alone.

I am strengthened for my dis ease journey by the human experience of connection. When I am able to be with those who balance their ease and dis ease so that life goes on, who reject the disabilities that others of less creativity imagine for them, and who embrace the new abilities that they have learned along the way; these people strengthen and energize me. When I imagine myself cut off and alone, my vision is literally oppressed into a gray despair. I don’t want to oversimplify, but it is when others share the new abilities they have learned from dis ease, even when these are most subtle or even unconscious, that my own burdens seem less disabling and my vision seems clear.

Dis ease gives us the choice of The Tell. As a noun, it is acknowledging the messy jumble of all the layers of our experience. As a verb, it is the truthful sharing of how we feel. When I see the inevitable spiral toward the great gift that dis ease brings, I know it is the gift for which I have prepared my whole life, fully and humanly shared. Whether we wish to admit it or not–liberal or conservative, rich or poor, religious or atheist, gay or straight, black or white, English or Spanish–each one of us carries dis ease and the choice of The Tell.

To paraphrase George Burns, dis ease is not for sissies. Dis ease offers The Tell as the very human gift that can mean growth in capacity, even as ability shrinks. Through The Tell, I have learned just how resilient and brittle humans can be. Through The Tell I have seen how dis ease debilitates some and strengthens others, enhancing vision or blinding the bearer, marking where we were and indicating where we are going. It is truth in the narrative, and it is truth in the archaeology.

All of us carry dis ease. All of us seek to ease the hurt. All of us have choices, and all of us have no choice. It is the knife-edge of the present that each of us walks. It is the omnipresent question—will we be strengthened by the dis ease journey, or will the journey overwhelm us?

For each of us, only time will tell.

The Bargain

It has been almost 6 months since I received my diagnosis of ALS, and what a ride that has been. After the initial smackdown of the diagnosis, the ups and downs of medical flurry, and settling in to a dis ease routine, this last 6 months has been quite an experience. One of the most interesting developments for me is what I have come to call the hope bargain. It is the kind of thing that everyone does, but I have to admit that my version is just a little embarrassing. Part über-reality, part fantastic dream, the hope bargain for me is a strange hybrid experience. This past three weeks, as I have reengaged with the medical world–Mayo at the beginning of the month, and this week with the research clinic in the Twin Cities–the hope bargain is front and center for my consciousness.

Everyone has their little hope bargains. In my old normal, I’d hope for a green light and bargain that I’d never be in the intersection when it turned red again (a pretty hopeless Minnesotan thing to say by the way). I’d note that my bike needed work, hoping I could put it off one more ride by bargaining—“Please just let me get this ride done and then I’ll fix it.” I’ll bet you have hope bargains in your own lives—everything from how to lower your cholesterol, to hoping that the extra 15 minutes of cooking didn’t ruin the meal. I think it is human, and it raises questions about why we think it does any good and with whom do we think we are bargaining anyway. For the most part, it has always struck me as a pretty harmless, maybe even healthy thing to do. It is kind of like the Jeff Goldblum line from The Big Chill, “Don’t knock rationalization. Where would we be without it?” I’ve just assumed that hope bargains were an everyday part of the human experience.

Now for me, the hope bargain has changed a bit. With all the effort I make to live in the moment, to accept the things I cannot change, to be as I am to be, with all that work, I have an intense hope bargain going on. Based in a past life that reminds me of its power every single day, and looking forward to a future that I cannot help but want, it is the hope that somehow, some way, this dis ease thing can be slowed or stopped. I hope, I bargain, and it goes something like this.

“I can handle this if it’s just taking my legs. Please, I’ll put up with anything if it is only my legs.” It’s a quasi-whiny version of Cat Stevens old song, “Moon Shadow”—“and if I ever lose my legs, I won’t moan and I won’t beg.” Well, I’m moanin’ and beggin, at least in this little prayer. Or maybe it is something like, “I promise to laugh more and cry less, if only I don’t have to do a vent in this progression.” You get the picture. It is perseverance on a theme of Kübler-Ross, only without the denial or the acceptance. While it is a little embarrassing to admit I do this, I know that these hope bargains have been more than helpful to me. They have helped me to get my head around a precious past and a scary future without needing to be overwhelmed by either. Believe it or not, they have helped me center myself and to feel the spiritual strength I need to face the issue of the day, whether it be dis ease’s relationship with work, home, or something else. In some ways, the very act of the hope bargain is the greatest hope and biggest bargain of them all.

I have two things I want to share that have really brought the hope bargain home to me in the past three weeks. First, it is the wisdom of the Mayo folks and how they worked on me to accept riding a scooter. Second, it is the fact that I reconnected with the great research clinic folks in the Twin Cities, and I am poised to start a drug trial. I’ll start with Mayo wisdom.

My last visit to Mayo left me energized. I’ve complained in the past about feeling like I was a collection of symptoms when I go to clinic, and there was some of that in this visit. But I had decided to get through that part, and I am glad I did. The clinic staff clearly had an agenda: “OK, so ALS isn’t your first choice, but given that you have it, what do you want to be able to do?” What a hopeful question–my answer, “I want to work. I love my job. As long as my colleagues feel I am advancing the cause, I want to be there.” They noted that I talked consistently about conserving energy in an environment that needs energy projected. “How might you project energy?” they asked. “I need to get out more,” I answered. “Would you consider a scooter?” My reply, “I don’t want a scooter.” With humor, gentility, a little tough-love and perseverance, they wore down my stubborn hopelessness, installed a little hope and got me to accept a bargain–if I want to work writ large, I have to be more mobile. “We can arrange for a scooter for you through the ALS Association.” As difficult as it is for me to accept the diminution that a scooter brings, I have to say that it is a great way to conserve and project energy. It is a bargain that presents hope for work. Suffice it to say, that I am learning to do Management/Leadership By Scooting Around. It is a sea change that saves energy, and has freed my sense of place.

My second hope bargain is bigger than a scooter, for this week, I enter the international drug trial for dexpramipexole through the Berman Center. I cannot tell you how hopeful I am about this. First, it is finally an opportunity to DO something, to say directly to my ALS, “you might not get everything your way after all.” The Phase II trials have been very encouraging, and even though, as the Mayo’s very wise and kind Dr. Jones reminded me, there is a long history of hopeful Phase II’s that ALS has crushed in Phase III, somehow this one seems different to me. Yes the trial is double-blind. Yes it is placebo controlled. But I’m in, and even if I get the placebo, I’ve decided to hope in the placebo effect. The bright and caring Dr. Tiryaki took me through a lot of the research numbers yesterday, and I think that even she, with her very realistic look on ALS, is hoping that this time in spite of everything, we might double the number of drugs available to slow down or manage this dis ease. I think we are all in a bit of a hope bargain on this one.

So I want you to know, that I have this hope bargain. I’m not dead yet—far from it. I have hopes. I bargain those hopes, sometimes meaningfully and sometimes not so much. Through the luck of geography that allows me to access the medical expertise of an entire state, and the discipline of naming the bargains and keeping alive the hopes, I see a path, probably with wheels, that is keeping me keeping on.

In the words of Pete Townsend, “I call that a bargain, the best I ever had.”

The Stairmaster

In the world of workout machines, I never liked the ones known as step climbers or stairmasters. You probably know this machine. It simulates the action of climbing stairs and keeps track of how many floors you have climbed in a given session. For some reason in my winter workouts, I always shied away from these machines, preferring the crosstrainers and treadmills. And of course, my real preference was to be outside, getting in a run before my knees went, or biking for an hour in the cool of the morning. Stairmasters were just not an aerobic workout I wanted to do. On the other hand, I used to take the stairs every chance I got. I’d see it as a little gift to my heart, waking me up for the next meeting, giving me a little adrenaline rush. Taking the stairs was as good as a cup of coffee.

Now, as a part of dis ease, it is hard to describe just how difficult stairs have become. I can walk pretty well on a smooth surface, at least with a cane and an ankle-foot orthotic, but stairs have become a real physical challenge. I’ve come to the point where I will do almost anything to avoid stairs, even if there are only a few. When I start up the stairs, it requires great concentration. I have to remember to lift my left foot carefully, exaggerating my step above the normal rise of the stair. With atrophied muscles, I just don’t have full control of my legs, so I end up using a lot more energy than usual. When I head down the stairs, I have to think hard about maintaining my balance. I turn my foot to the side and focus on keeping an even keel. Anything in my hands could tip me, so the need to pay attention is immense. The act of negotiating stairs with the new disabilities that go with dis ease requires specific concentration on what I am doing in the moment, stair by stair. However, this is a lot harder than it sounds.

Stairs make me face my able-bodied past. As I grab the railing with one hand, push hard on the cane with the other, and engage more muscles than I would have ever thought possible for such a simple act, thoughts and questions pop into my mind unbidden. Suddenly, I am aware that I’m thinking/muttering, “What happened to me,” or “How did this come to be?” Of course, I know the answer, but it is like an out of body experience—”who is this guy that struggles up or down stairs?” It is so tempting to remember the old normal body that used to take stairs two at a time without being winded, and of course in that remembrance is sorrow for things that were and will not be again. It is a focus on the past without relief in the present. And of course, the past isn’t the only place I naturally go. Questions about the future seem to appear out of nowhere.

Stairs focus me on a future of less and less muscular control, inspiring little fears and anxiety. They are symbolic of movements that will be less likely, and more difficult with each passing day. Now, I see a set of stairs before me, and the temptation is to look up to the top or down to the bottom and cringe. How in the world will I make it to the top when each step is such a challenge? How can I put 10 or 12 or 18 steps together, one after the other, descending into a less stable sense of physical well-being? The act of negotiating stairs causes the future to manifest itself, both symbolically and physically, and I concretely face the me that is becoming. Symbolically, dis ease is a giant staircase, and somehow dis ease stairs get larger and larger as my future steps grow smaller and smaller.

If you have been reading me, you know that I just cannot stay in a place of despair for too long. My physical experiences with stairs are not unique. All of us have our own stairways that cause us to grieve a past that was or fear a future to come. Mine is just so increasingly tangible. Living a human life with the gifts of cognition and meaning requires that past and future are constantly a part of our present existence. We couldn’t survive without this. Remembering the past is how we learn. Predicting the future is how we keep going. So in my stair challenged state, I am not being overly sensitive to past and future. Humans often get so caught up in our past ways of doing things, either by mourning something that cannot be or being held hostage by things that went bump in the night, that we forget to locate ourselves in the moment that is. Or we become so dependent on our prediction of an anticipated future, we forget to realize this moment of presence. As a conductor, I would often see both of these phenomena in my choirs. We’d focus on a past great performance and miss the fact that we were singing now, or we would hold ourselves out for the future song, not realizing that we were singing beauty to a world bounded only by our practice space. There is nothing in the act of making music that requires any more than paying attention to the moment we are in, but music like life, takes will power to focus on the joyful production of the present.

There is a discipline to integrating past and future into the present, and it is worth it. Such discipline brings discernment. For my new normal, stairs are a discipline. If I am to make it through the stairway’s challenge, I cannot allow the grief for the past or the fear of the future to dominate. The past and future are present, but it is far better to live in the moment, even the second of each individual stair. It is a consciousness of the now that says, “This body, as it is now, is climbing this stair, as it is now. There is a way to make this climb today, and I am finding that way.” I know this sounds like a lot of concentration for a stair, but it is in the small steps of each day that I find the strength to handle the larger things to come. I appreciate the lesson the stairs teach me, each and every day. I used to climb the stairs one way, now I do it this way, and in the future, I will take stairs a new way.

The past does not have to be mourned, and the future does not have to be feared. Both exist to be embraced in a new present moment. For me, now is a good time to be living, and living is about being open to the gifts and challenges of each step one by one. I’ve got lots of stairs in my past, and lots of stairs in my future. But for clarity and grace, I must continue to learn to focus on stairs one step at a time.

And sometimes, I just choose to take the elevator.

Yours in ALS,

Bruce

Natural You

The New York Times had an interview with Stephen Hawking today. He is the renowned physicist who was diagnosed with ALS an unheard of 48 years ago, at the age of 21. Dr. Hawking has lived with his ALS all that time, and in spite of his dis ease, he is one of the most prolific theoretical physicists of our time. Whatever you think of Dr. Hawking (there are enough stories about his marriages and his lack of patience with foolishness to at least be cautious), his accomplishment in both theoretical physics and longevity with ALS is remarkable. What really struck me about the interview was not so much the content, but the point of view of the interviewer. Claudia Dreifus is a respected New York Times writer. She writes the “Conversations with…” feature in the Tuesday Science section, and she has recently co-authored a book on Higher Education. I like her a lot. This conversation, “Life and the Cosmos, Word by Painstaking Word,” hovers between Hawking’s ALS and his theoretical physics. And it is a revelation about more than Stephen Hawking. It reveals a state in which most of us find ourselves when we are face to face with dis ease. Let me explain.

We naturally have expectations of Ms. Dreifus as Stephen Hawking’s interviewer. We expect her to ask questions about black holes and his book A Brief History of Time. We expect her to ask him about living with ALS. And of course we expect her to locate her proximity with Hawking with the pronoun “you.” but there is something in this particular interview that indicates more than just the “I the interviewer” and “You the subject” proximation. Often, I detect in mainstream media a sense that the experience of dis ease is only located in the “you” person. Dreifus’s four dis ease questions of Dr. Hawking are framed in what I have come to think of as the “unnatural you.” You are broken of body, and I am not, and the “natural I” can observe the “unnatural you” from a safe distance—kind of like reporting on the floods in Memphis from a TV studio in New York. It is as if Hawking’s life, remarkable in its theoretical consideration of the cosmos, is only remarkable due to how unnatural it appears to be. Dreifus goes so far as to ask him if, due to his life longevity, he really has ALS—for me, a telling confirmation of just how unnatural the great physicist seems.

Think, if we put our heads around this wondrous phenomenon of life, is it not almost a guarantee that as humans, we will experience trauma, illness, upheaval and aging? Don’t the great stories, both biographical and fictional, frame themselves in narratives of people who experience great adversity, and come to some negotiated peace or not, with their own dis ease? Yet on the surface, we gaze and gawk at the prospect of dis ease in our own lives as if it is an animal in the zoo, and we are protected from its danger by thick glass, bars or other barriers. For me, this voyeurism on dis ease is denial of the “natural I” by projecting an “unnatural you.” Dis ease is the unnatural enemy, to be fought, resisted, denied, and certainly foregone as we make our way in this very short gift that we call life.

I think we lose an opportunity for living by taking this attitude, and the opportunity we lose is not so much one of being realistic. It is in framing life in a way that has space for all of the things we hold dear, in the context of what is to come naturally. If we see dis ease as unnatural, then we can look at the dis eased person as an “unnatural you.” It is as if we expect a person with dis ease to now give up and not care about the things in life that he or she valued the day before their disability. I get this. My own brief journey with dis ease has been one that seeks reconciliation between my own pre-ALS attitudes of how unnatural dis ease was, and the me-with-ALS struggling to frame my new normal as a natural gift of life.

I realized this internal conflict almost immediately after my diagnosis. When I go back and read my early ALS journal, my greatest fear was not of dis ease. It was of imagined perceptual changes from my loved ones, my friends and my colleagues. Yes, I was worried about my ability to manage ALS, but I was even more worried that they (you) would see me as only ALS. I fretted that such an overpowering perspective would delimit your ability to see the “natural me.” I went so far as to write the following in mid-December:

“Don’t talk with me about personal and professional boundaries. Each of [my] identities surrounds my life roles–Bruce the lover, Bruce the husband, Bruce the father, Bruce the professor, Bruce the dean, Bruce the music director, Bruce the God-seeker, Bruce the artist, Bruce the friend. The boundaries might be more about the content, but not about the roles and identities. They are all inexorably intertwined.”

And then I ended it with this: “Now I am Bruce, all of the above, with ALS.”

And there it is. It is so natural. If you just flip your perspective a little bit, you realize that the amazing thing is not that those with dis ease remain engaged with life and love. It is that we humans believe that dis ease changes those desires, needs, or life joys so that they become irrelevant. How illogical is that? Many of you have told me that you cannot imagine getting a diagnosis like ALS. Imagine this—even now as you read this, you are preparing for the time when life will be harder. Your life is dynamic. Your body will not be the same, and your mind will not be the same, but your heart will still want love, your skin a caress, your ears a great tune and your mouth to be kissed. Everything will change, and nothing will change. The natural you is the one that seeks ever more challenging experience, because it prepares you for the natural way of things. Each challenge, each papercut, each loss is also an opportunity, a healing, and a gain.

So, I am thankful to Claudia Dreifus for her conversation with Stephen Hawking. It focused me to reframe the “unnatural you” into the “natural I.” It helped me on a day when I was fatigued and having difficulty just getting out of my chair, to remember that I am Bruce with dis ease. I still love, kiss, care, think, read, reason, sing, lead, laugh and cry.

It is only natural.

Measuring Up

I am on my way to Mayo for a quarterly ALS management consultation. This is my fourth consultation since being diagnosed, and my second at Mayo, where I have decided to go for my ALS Clinics. As early as I am in the “progression” of my dis ease, I am getting into a familiar routine with its management. There will be lots of observations, pushing and pulling by neurologists and physiatrists, blood drawn, pulmonary tests, OT and PT info, speech and diet evaluations, and an incredible amount of information offered (I might have a couple of questions not easily answered myself). In short, it is a time of measurement and prognostication, and I have to be sharp, even though the ALS Clinic is incredibly exhausting. The greatest challenge of this experience is to remain a whole being, in spite of the systemic reduction of me from human, to a series of measurements and symptoms indicative of dis eases’ control and promise.

I am going to share with you one of my earliest experiences with dis ease, as it is instructive. When Ev and I received my diagnosis, it was an assault on everything we hold as human. It was like a psycho-emotional cyclone, obliterating self, family, even our friends. My ALS diagnosis was delivered in a way that reduced me to my basest and most inhuman self. The brutality of the delivery inspired PTSD moments (and flashbacks). The way that the neurologist forced us into his measured reduction consisting of a series of medical tests and a presentation of symptomology, stripped away any delusions of humanness we might have held. Then to follow it up, he removed all hope through his masterful use of a psychic probe of suicidal tendencies (“I must ask you,” he said. “Do you feel suicidal?” “No,” I answered as I wondered if homicide was justifiable in this circumstance).

Don’t feel sorry for us. But understand that measurement has consequences when we reduce humans to merely the measure. I am thankful to have found healing in the love and caring of my partner in crime, my sons as they deal with their father’s mortality as imperfectly and perfectly as they can, and of course in the myriad of friends and colleagues who have reached out in so many significant ways. But measuring up to dis ease still remains. It is seared in my psyche as I move into this quarterly liturgy of managing the symptoms.

Thus, even in the supportive environment of an ALS Clinic, I find myself fighting through the reduction of me into a progression of symptoms, constantly telling myself that these folks have my best interest at heart, while carrying the fresh memory of diagnosis delivered even though it is yesterday’s news. I have to admit to you that I am so tempted to lie to them, to tell them nothing about this symptom or that. I know this is a delusion to maintain my own sense of control, but it would allow me to say, “I am in charge of this person dammit, and y’all can go play your measurement games with some other patsy!” I know I shouldn’t feel so defensive about something that is actually beyond my control, but I have this old normal need to measure up to the old ways, to behave as if everything, every measure taken, was normal. And herein lies the insidiousness of dis ease.

We really do lack control. All of us. To make life somewhat predictable, we have devised multiple sets of measurements by which we judge our circumstances and the people within them. And when those measurements fall outside the range of normal, a range of which we are not even aware most of the time, we create a new normal that allows us to control these seeming freaks of nature, as if we had control. Bigotry works this way. The big institutions–government, religion–work this way. And this is the way that dis ease management seeks to work–taking the remarkable, the extraordinary, the frightening and yes the supernatural–and reducing these to their simplest forms for management’s sake. It is classic. It is so typical for us as humans to reduce our experiences into these easily normed categories, that we have made the experience of reduction unconscious. Professional dis ease management takes this unconscious reduction, and makes it a conscious act, assuming that in consciousness lies truth.

There is a scene in the movie Apollo 13 where the astronauts rip off all their health monitoring equipment in defiance of the flight surgeons. Suddenly, they take back their whole humanness, by refusing to participate in the vitals and symptoms reduction that the monitors foster. As irrational as their actions may seem, I understand the way they feel. Are they really in control? Nope. They are still in deep manure with a spacecraft that won’t behave. But it feels like they are more in control, because they don’t have to measure up to the assumptions of the (so called) mission controllers. The scene speaks enormously to me.

If you knew me pre-ALS, you knew an active, healthy guy with all the unconscious assumptions by which he was measured. Now, with dis ease, I am framed by the symptoms and measurements held within ALS. To get the most out of my dis ease management, I must consciously tell myself not to lie to the team, that maybe some reduction isn’t a bad thing. Because deep down, even though my spacecraft is also not behaving as planned, I need to believe that I too exercise some semblance of control. In order to take this on in a meaningful way, I have to feel like I’m steering the ship. It is the human dichotomy of knowing that ultimately the ship will go where it goes, because of or in spite of the exercise of my will in a way that makes me feel I have influenced its trajectory.

ALS, dis ease has changed me. I am both more open, and more measured in my approach to life. I am more demanding of control, and I have less faith in control’s delusions. I am much more conscious of others’ perceptions as to whether I am measuring up, and I am much less worried about what others think those measures mean. Dis ease picks off all of those scabs, exposes all of those fallacies, and it reduces the superhuman medical establishment and the ordinary human day-to-day experience to the realm of merely mortal. Measuring up takes on a whole new meaning, and it is way beyond the meaning of the measure. In the end, the well meaning clinic, and the psyche battering neurologist will both have to get it. In spite of everything, we humans are basically in the hands of something much bigger than ourselves. Any control we might exercise, is only because our existence aligns with its ultimate purpose. I find comfort in this statement of faith, and as I get ready to start the Mayo run, it allows me my own measured reduction–my symptoms into the wholeness of being in this world.

It really is the only way to measure up.