The Lover

It is strange to me that as my dis ease progresses, or more accurately—my body regresses, my love for life is more focused. As you know, last week I melted down in the great, bubbling cauldron of ALS. I needed to come clean, pick off the scabs, and bleed the wounds. I was hurting inside and out—a perfect storm of emotional weakness and physical breakdown—and I required the full embrace of the dark fog and white heat that anger and grief bring. I needed to acknowledge the weird fragmentation of staring at a shortened life, while simultaneously attending to the pinpoint accuracy of knowing death. It was an out of the depths moment that left me exhausted and fatigued. And amazingly, despite the loud and anguished roar in my voice, another voice crept subsonically into my space. When I was yelling my loudest, something quiet emerged just below the range of human perception. Urgent and strong, soft and insistent, this new voice asserted its loving empathy into my consciousness. Now, as inadequate as I feel to the task, I need to share the love so to speak, and give you a hint of that voice that re-centered me.

How do we learn about love? For me, the experience has been a strange set of variations. I grew up, keenly aware of the difference between love professed and love demonstrated. I tried on different loves as most of us do, casting aside some, cast aside by others with callous indifference or wrenching awareness, swirling in the laser beam heat of firsts, and somehow, with very little planning, and probably less skill, arriving at a place where love became a blessed way of life. I learned that loving is wonderful and delightful, and sometimes you love so much that it crushes your insides. Stand in a hospital room with your two-year old son and listen to doctors suspect leukemia, and you know what I mean (thankfully it wasn’t). For me, nothing brings this crazy jumble home more than the experience of sharing my love of life with the loves of my life—my partner in crime Ev, my sons Dave and Jon, and now paying it forward with the loves they bring into their lives and subsequently mine, the remarkable young women that have become a part of our collective, conscious whole. God it is sweet to breathe them all in, to hold them in my thoughts and be in their presence. It is a honeyed whisper that tickles the ears and blows a breath of life bigger than anything dis ease can do. Last week’s meltdown removed the dust, dirt and accumulated grit and left these loves gleaming in the aftermath.

Then of course, there was the revelation of love from friends. So many of you wrote with variations on a theme of “Whine on brother, whine on!” Some of you went so far as to say I deserved to melt down, that it just isn’t natural to go through dis eased living without resenting the prizes won in the great game of “ALS Sucks.” Some of you literally stepped up beside me and said that if I was going to curse God and shake my fist at fate, well you’d like to be there shaking your fist in solidarity. I guess it just surprised me, but why should I have been surprised? The love that you expressed, the care you revealed, the permission you gave was like a healing balm that I’d bottle if I could. It isn’t that I miraculously made peace with my dis ease, but the loving connections with friends helped me stop feeling sorry for myself. Even more importantly, I found myself reflecting on how lucky I was. It was another variation on how much I love this life-gig, and I’m just not ready to give it up yet. It was a gift of insight that broke through the outsized blindness dominating my senses.

Then there were the gifts so many of you sent. A friend from long ago shared the remarkable Caring Bridge blog of a former student of hers. I need to ground the context here. In every school I have ever been, there are former students that, when mentioned, bring a mist to the eyes of their teachers and a reverence for just how remarkable young people can be. In 1993, I remember watching faculty and students drop everything when a young graduate from the year before would return to Bangkok to visit with family and friends. Now a Mennonite pastor, she is writing her rapidly metastasized melanoma, three small boys, loving husband, and her community into her own dis ease diary. She acknowledges how fleeting this life-moment is, and she speaks her fear that her boys will not have her for much longer. Her love for life seeps out from the everyday experiences that go with balancing seemingly irreconcilable differences–radiation treatment with mothering a two-year old, excessive fatigue with the life energy of a loving husband, caring for a community with the care of her community. Her words are wonder and awe and humor and crushing sadness and anger. Reading her thoughts centered my thoughts. Hearing her voice her dis ease, opened me to the song of my dis ease.

So let me share something with you, something more intimate than any maelstrom of self-pity and anger that I could muster on a blue October day. Deeply spiritual and achingly human, a paraphrase of the great mystic George Herbert, I was reminded that, “Love bids you welcome.” For me, the white heat of cursing God and fate, meant to disabuse humanity about who I really am, revealed instead the holiest of loves, and dare I say it, the holiest of lovers. “Lover,” literally “one who loves,” has all kinds of other illicit meanings. Too bad! The lover’s clarity for me this week was the God-kiss from friends, family and strangers, reaching through the fog, and hanging in my skies, like a clear autumn sun. I emotionally dumped all of that stuff thinking that I was writing with permanent marker on my soul. Instead, it washed away like dust off my hands. And I think, that is the point.

You are lovers, as am I. In the pain and suffering that reminds us just how human we really are, is a voice urgent with its message of reassurance. For me, the centering prayer of a brilliant young woman seeking to remain a vital force in the lives of all she loves, reminded me to listen for the voices that live in all I love.

And I swear to God, those voices whisper, “I love you. I love you.”

Loving life is bittersweet. As the weakness of ALS careens recklessly through my body, caressing it with the breakdown of my physical being, the intellectual and spiritual strength of ALS calls my soul to listen to the voices vital to this life. It asks me pointedly, “Are you open to love, or are you so angry that you will not feel? Do you want to live in the fog of self-annihilation, or the clear morning sun of the love that surrounds you?” I realized that what I said in my hurt and grief and anger and pain, all of it was because of how much I am in love with this beautiful life. And I realized that the fog surrounding me only needed the burning clarity of a meltdown to reveal that the love in my life was always there, always present, always whispering its strength and encouragement if I would only pay attention. You can call it whatever you want—God, the Buddha, energy and chakras, good friends on an autumn day—it is a voice that sings life. And sometimes you just have to be angry enough to hear it.

If I’m Lyin’ I’m Dyin’ (Warning–Raw and Whiny)

I have stated that writing these weekly reflections is therapeutic. Each week, I re-center myself through these mini-chapters that chronicle my mental and emotional journey around my physical dis ease experience. And you have been so kind to me in your comments, private messages and snail mail cards and letters. In fact, your kindness worries me. I just don’t feel like the guy you tell me I am, especially lately, as it has been getting harder and harder to negotiate the regression of ALS.

For some reason, my physical losses have really focused this week. Walking is almost gone. The muscles in my torso and lower back have lost their strength. And of course, this means that normal things like dressing are harder to accomplish. This week, more than usual, grief and despair have been close to the surface. I came back from a program on Tuesday so exhausted from standing with a handheld mic for a half hour, that I sent out one of the whiniest missals I can recall. I’m not proud of it. It had a quality that could have been interpreted as blaming the world for what has befallen me. Self-pitying, fatigued, and in a voice that sounded like aluminum fingernails on a slate blackboard, I really showed just how small dis ease can make you act. “Wow!! Who was that guy?” It took a morning to kind of patch it up, although everyone knows that once you say something, it cannot be taken back, not completely. It has been a hard week on me, my family, friends and colleagues.

And then there is the preparation of our new place. We are working with an accessibility designer who has learned to be sensitive but matter of fact about such things as lift and transport systems (since everybody knows that you won’t be able to move yourself), and discussions about the finer techniques of toileting for the paralyzed. These conversations are accomplished with care on their part, but nothing is off the agenda (so just get used to it). Of course, each of these conversations, from the layout of the transport to the need for a mattress that will raise you up, to the location of the toilet, the special sink, the roll-in shower, desirability of remote controls for lights and heat and locking the door illustrate how lucky I am. The fact is that we sold our house and are downsizing to a point where we can put these controls into the finish of the condo, and still get a lower mortgage payment. Most of my fellow PALS cannot even begin to put together the resources to help them manage, and if it wasn’t for the ALS Association, they might have nothing to support them (and I know that not all local chapters are as good as our local in Minnesota). Yet, I cannot help but feel resentful that others “know” where I am going in a way that I cannot. I hate the fact that we have to do this. I grieve both inside and out as each accommodation is planned and made, because it says to me, “You are dying. Each plan made is just another step closer to your final reality.”

I warned you this was raw and whiny.

But that is why I write. Therapy for the fingers and the soul, these weekly postings have become for me a cross between aspirational wisdom and physical malady. They help me to acknowledge my dis ease losses, while describing the space that helps get me through them. What I want you to know is that this writing is not the story of some Judeo-Christian Buddhist Saint who can look back on the physical existence of life with no regret. That would be a lie and a misrepresentation. Dis ease is not graceful. I guess I am writing because I value honesty. I don’t want you to think I am something that I am not. I’m just trying to make sense of all the knowledge and experiences that I continue to gain, while at the same time negotiating all the physical functions that I continue to lose. And I want you to know that it isn’t easy, even if I make it sound like it is sometimes. It is damn hard, in spite of the fact I have family and friends and colleagues that have chosen to stand with me in this process. Every once in a while, I just find myself crying at the loss. Every once in a while, I can’t help but shake my fist at God and curse my dis ease and this path I am on. Believe me, I am no saint, and it would be dishonest to pretend to be as much.

So what is the point here? I’m not sure. I certainly don’t want pity. A couple of weeks ago, I went to my primary care physician for the normal yearly check-up (I have ALS, by the way), and having not seen each other since my diagnosis 11 months ago, she came into the room with that “tragic look” on her face. I told her to stop it. I just cannot take the pity. Treat me normally. Her response was to brighten up and say, “Thank you, good to know.” So I know that I am not looking for that. But I also have to say that it doesn’t mean I don’t need empathy either. This is a very complicated space to occupy. I want to be as normal as possible, and want to be treated that way. At the same time, it is impossible not to acknowledge that what is normal for me is about accelerated loss and a shorter lifespan. It is the attempt to reconcile the need for honesty with the need for grace that frames my life.

And sometimes, God help me, I just need the melt down.

The great DJ of the sixties, Wolfman Jack, used to have a line that he would growl into the microphone–“If I’m lyin’, I’m dyin’.” I’m sure he meant it in a way that was supposed to be glib and hip and cool. But there is a weird truth in the contingency. I cannot help but feel that one of the very few things I can keep intact is my honesty. Sometimes it feels like that is all I’ve really got. It is almost like saying that covering up the experience feels like it is hastening my demise. Lyin’ is dyin’.

So forgive me for the corrective today. I will regain the space that has helped me thus far; I have faith in that. But the dis ease that requires faster than a speeding bullet negotiations of every little physical loss, the need to be planful for the eventualities that are almost 100 percent assured, the trying to keep just ahead of the awful creature that is nipping at your ankles, even when you cannot move your ankles, sometimes obscures the space that I know I’ll find again. Sometimes, I just need to let it out, feel sorry for myself, wallow in the anger and self-pity, and then be done with it.

The Wolfman was right. There is death in the dishonesty, and in the end, honesty is all we’ve really got. If I’m dyin’, I shouldn’t be lyin’. Honest.

Paying Attention

I went skydiving again today. I think God was OK with me not making it to church, since I was with two ministers. Actually, we meant to dive yesterday, but the winds were gusting heavily, and by the time they calmed, we could only go up to 9000 feet. So we decided to come back first thing this morning and go up with the first planeload out. I’m so glad we did, because it was sunny, COLD, and a clear day when you could see past the curve of the earth and all the way to the moon. My friends Paul, Pete, and Doug plus my son Jon went up as well. I think each one of us had a unique experience, not surprising, but certainly interesting. I won’t speak for them. They can blog or comment if they want, but for me, my second jump was in some ways even more special. It illustrated something that has really caught my attention of late; how do we actually attend to what we are experiencing? This is a pretty important concept in the dis ease world, because with so many new and not so pleasant experiences bearing down at the speed of ALS, it is often difficult to decide what is important. Just like my first skydive, it is hard to figure something out, until it has whizzed past you. Where you look and what you perceive can determine your whole outlook on life including the way you approach the rest of what is coming.

How we perceive things is pretty dependent on where our attention goes. This helps explain why eyewitness accounts can vary so widely in their detail. If you were looking right at an event, you might see one thing, but if your head just happened to swivel around to look at that shiny Maserati that went by, and you also happened to see the same event out of the corner of your eye, you might perceive something completely different. In dis ease, I find myself having to choose where my attention goes, mostly so I can frame it into something less debilitating than the reality of ALS. This means that as my experience of dis ease continues, I am conscious of the need to put my attention on things that are meaningful, for example– how good it feels to have such supportive friends and family, while simultaneously taking my attention off of how scary dis ease feels, especially as I contemplate things such as not being able to walk without the aid of a walker. This matter of perception became focused for me last week in a conversation anticipating my next skydive.

Last Thursday, I was Skyping with my friend Ernestine, when she asked me why I wanted to skydive again. It would have been easy to be glib. I could have answered, “I do so little well, I thought I would access one of my new skills—falling.” I could have answered, “Because it is there.” But one is not glib with Ernestine, at least that is my take. I thought about it, and it suddenly came to me. The second skydive would allow me to do something I couldn’t do in the first. I knew where to focus my attention this time. My perception would be different. Skydiving would not be an overwhelmingly new experience, overloading all my senses so I couldn’t really focus on what was happening. Instead, I could pay attention as it happened, because I knew where my attention should go. I knew what would be coming, and I could fully experience each step—from the flight up to 13,000 feet, to the process of getting the special gear all hooked up, to the shimmy over to the door, the roll out of the plane, and of course the overwhelming rush of the free fall. I knew what to expect, what to anticipate. I could actually slow these events down as they happened, rather than experience them at a speed that only allowed me to process them after they were past. In short, I wanted to skydive again so that I could experience it based on what I knew from my first dive, in addition to the unknowns that would be surely arise in this one.

There is a real parallel to dis ease here, because dis ease overwhelms the senses. Even when the change is slight, it is still quite disconcerting to note the next step in the regression of the current reality that you know, while accounting for the progression of the dis ease you have been forced to embrace. To what will you attend? I find myself learning these lessons over and over again. For courage’s sake, I must reframe what is happening to my body into a space that is confident, protected, and safe. I do this in a variety of ways. Just as I knew that the ride to 13,000 feet would be full of nerves and anticipation, I also know that the ride with ALS is full of anxiety. So I find that place where I can pay attention to other dis ease results—the joy of living each special day with my beloved Ev, the privilege of continuing to work in a job that I love, the fact that so many have reached out to me in support, the pride in my sons and their partners. I know that with each loss, there is also a potential gain, so as I anticipate the losses with the anxiety that loss inspires, I also seek the emotional space that is so reinforcing of this life lived, in spite of ALS and its dis eased accompaniments.

Today when Joe, the man who makes it possible for me to dive, and I rolled out of the plane, my eyes were wide open. What stroke of fate allowed the skies to be clear, and a waning gibbous moon to greet me in that first rush of leaving the plane? I remembered to pay attention, and the plane and the moon and the brilliant sky were the first things I saw. As we took the plunge to full velocity, I could feel the bitter cold of 9 degrees Fahrenheit, but I was hyper-aware of the rush that freefall brings. I was able to speed up the time around being cold, and slow it down in the freefall, so that when Joe signaled that it was time to deploy the chute, I was almost surprised. And the strength of the wind meant that we had to do some fancy and deep turning in order to hit the drop zone. Joe pointed out two fun-divers who had followed us out, and I got to watch them deploy their chutes. I could look up and see my friends and my son as they circled off in the distance. And when we landed, I was ecstatic, not because of the rush of an overwhelmingly incredible experience, but because I knew that the memory would be indelible. Tonight, I can close my eyes, and see the dive inch by foot by mile all over again.

Human beings are blessed with the ability to leave a record. Sometimes we imbue that record with meanings such as legacy or historical learning. Other times we associate such strong emotional reactions to the records that we keep, that the emotions become more important than the record itself. And of course, as we leave the gifts of our own musings behind, we also choose what not to leave—a choice that might be more significant than what we would have others know. I guess, that when Ernestine asked me why I wanted to skydive again, it hit me that in some ways, it was the same answer as to why I wish to leave these random musings. I recognize that in this reflection, this variation on a theme of dis ease, is the desire to be a first experience for others. If I can offer to you some of the things that I feel, perhaps your way will be more consciously chosen as you face your own ultimate path. I don’t mean to say that there are not multiple paths to the one destination. That would be arrogant. But I hope that in this reflection, you might recognize a little of your own journey, and be prepared before your next place comes. In other words, these thoughts are kind of a first roll out of the perfectly good plane of life.

The fact is, that in the writing of my dis ease, I have become conscious of just how much power one has over attention and focus. It is so much like skydiving; there is anxiety, maybe even despair, but there is also joy and enlightenment and learning and growth. I can focus on the fear that comes with separation, or I can focus on the liberation that comes in the freefall. Both are present, not mutually exclusive of each other, and powerful influences on how this journey goes. It is the nature of dis ease, to turn your gaze on each experience and count the losses while measuring the love. It is the Zen of freefall, the power of physical regression, and above all, the beauty of knowing that you can have other’s backs, and they can have yours. Pay attention, even if you have to miss church to do it!

Click Here for Bruce’s Skydiving Video #2.

Doing the Laundry

Last night, I dragged a basket of dirty clothes into the hallway (you would absolutely laugh at this sight!), sorted them and did three loads of clothes. I folded them, and I placed them in appropriate piles for Ev and me to put away. If you are scratching your head and asking, “So what’s the big deal?,” I get that. In another life, I would have seen this as just another normal weekend, but the laundry represents a greater reality for me. It means that one of the payoffs of moving from a 100-year-old house with multiple stairs into our temporary digs is that I get to be home productive again, at least a little bit. I cannot tell you the psychological lift this gives me, to be able to help a little, and it made me start thinking about other laundry lists that exist for those of us who are in the world of disability.

When you start losing physical function, the difficulty of loss is multiplied by the meaning that accompanies it. I learned early on in this dis ease journey just how much of my self-worth I put into my ability to physically do things. I was still trying to get my head around just what kind of losses I faced, when Ev and I met with a physiatrist at Mayo. She told us about PALS she had known who had done quite well for over ten years. She said it had to do with their ability to “live inside their heads.” I certainly can see that. When all you have is your intellect, then the ability to live on that level is important. But I also have to say that most of us see being human as projecting our selves physically. In that light, doing the laundry takes on a much greater meaning.

One of the things that I keep having to relearn is that I cannot do things the same way I used to do them. It would be easy to interpret these differences as loss, deficiency, and debilitation. And I have to admit that I have seen my differences from the loss perspective on more than one occasion. But it doesn’t have to be this way. I have learned that difference is different, period, though others may not be so generous. We humans carry such strong images of how things should get done, that deconstructing these images to accommodate new realities is difficult.

The laundry is a good example. My old normal picture of the laundry was that I carried the basket to the laundry room, and I stood up to sort the laundry. I loaded the clothes, and when they were done, I put them back in the basket and carrying them to the closets and dresser so that once folded, I could easily put everything away. All of this happened pretty quickly once we were through the wash and dry cycles. My new normal reality is that I must drag the laundry on the floor, because I don’t have the strength to lift it. I do this while holding on to my walker, because I don’t have great balance. I rest after each step, so that I don’t overtire myself. And I fold the clothes while sitting down, again resting even in between articles of clothing. This may sound like a lot of effort to do something so simple, but that isn’t the point. By doing the laundry, I am again a contributor to the maintenance of our home. I have shifted from the person who waits for someone else to do it, to the person who does things for us. This requires me to make a head shift, and it means that my dear love has to shift her head as well. It means that she has to let go of her pictures of what it means to do the laundry, or fix the coffee, or any number of other “meaningless” tasks that get you through the day. As so often is the case, it isn’t just about my interpretations and abilities to physically do something. It is also about the interpretations and abilities of others to let me do things differently.

I don’t deny that there are things I cannot do. This past weekend, as we emptied our home in preparation for its final sale this week, I only traversed the steps into the house once. I spent most of the time sitting and watching, offering guidance for what stayed, what went to Goodwill, what should be trashed, and what got loaded. Such guidance had to be done, and I could do it. It was mostly head work, not like doing the laundry, but important overall. And the friends and family that helped us out were able to get their heads around this change. They allowed my knowledge and organizational skills to work, and they offered to be my legs and hands. With this in mind, consider those people who work through their disabilities, who are able to maintain their work, who are able to find ways around their so called inabilities. And consider the world of the temporarily able bodied, who have conceptualized the workings of the world as only operating when it performed by able bodied humans. It is not a question of whether there is a different way to do things, it is a question of helping the world to understand that there is more than one way to skin a proverbial cat.

I continue to work in a job that I love, and I am sure that given its more public nature, questions arise about whether a PALS can be dean of a school. I can only say this. I don’t do the job the same way that I used to do it. I continue to learn and relearn that there are other ways to accomplish the same things, that the strengths that I used to rely upon such as endless energy and the ability to take something and move it quickly, are gone. But if you cannot live in your head and do university work, then where is such a phenomenon possible? I find myself in teaching mode a lot more. I find myself turning the hand and leg work over to others, where before I might have just done it myself. I take naps. And I can see that there are strengths to this approach.

As my friend Jane observed last evening, when you empower leadership throughout the organization, you get a whole different animal. Your people learn to be strong in their competence, and they learn new abilities that they might have waited to acquire had this disabling opportunity not arisen. In my present position, I think I can make this work. As long as I can be the mission reminder, the voice of the raison d’être, as long as I can furnish experiences that will help to teach the skills, competence and attitudes of a successful college, it seems to me that my school and university could actually see real benefits from the dis ease experiences of one of its leaders.

It is a lot like doing the laundry. There just isn’t one right way to do it, and the real lesson here is that we are more limited by our imagination than by our disabilities. It isn’t a denial of the real physical challenges, but to embrace the great challenge represented in these questions: “What in our temporary able bodied reality is limiting our imaginative capacity. Is the disability in the physical reality of my colleague or friend, or is it in my head because I cannot imagine another way to do it?” I think we would all be better off if we thought this way. Then we could truly get the laundry done, whether we carry it, drag it, or throw it on the floor.

The X Factor

It seems like I know a thousand people fighting through the ravages of dis ease. They live with an individual tenacity, and collectively, they represent dis ease’s many human forms. One is recovering from a stroke, many have non-curable cancers. I have friends whose most beloved partners have betrayed them, causing them the dis ease of questioning the most intimate details of their history together. I have friends who suffer from the grayish fogs of depression, and I cannot help but think that most of us know someone who has lost their job, and their house, and everything else as they attempt to take care of their kids and to stay out of the downward spiral of homelessness. Each one of these friends demonstrates a love for life’s blessing far beyond the strength required for most of us to put together a normal day in the life. For all you quant-heads out there, I think of these incredible people as examples of the following mathematical theorem:

Life Lived + X = What It Takes to Meet Extraordinary Challenges

It is the “X” factor that these friends demonstrate that really amazes me, and it seems to me the term “X Factor” has been profaned by the current media hype of a network that will not be named, and a producer who evidently knows a goldmine when he sees it.

You would have to have your head in a hole to not have heard about the new TV competition called “The X Factor.” I don’t know why I feel the need to understand such current media phenomena, but I do. So I watched one episode of “X Factor” just to see if there was anything different between this and the multitude of other “dream come true” shows that have flooded the big networks. It is formulaic. The star wannabes are either pretty good, or pretty bad, and everyone in the audience knows it. The four judges, probably chosen for their own “X factors,” either move them on, or they take them down. Presumably, it will get harder for the contestants as the competition continues, since the winner gets a million dollars and a recording contract, and in the end, there will be “controversy” over who should have won.

The “X Factor” refers to that which creates an emotional bond between these aspirants and their potential audience. It is more than just another pretty face singing someone else’s song, and it is usually associated with overcoming some challenge, while being able to sing about it. Just because it is predictable, doesn’t mean it isn’t entertaining and in fact, I am sure that one reason the show is so popular is that people know what good feelings they are going to feel when they watch it. But the X factor that I am thinking about, while admirable, is not so pretty. It involves all of the stuff that makes dis ease so unpleasant, and this works against the emotional bonding that is associated with entertainment.

The X Factor requires that we figure out the basics of adulthood all over again, just to keep on day to day. How do you go to the bathroom when the toilet is so low that you cannot get off it? How do you eat when all you want to do is throw up? How do you shower, shave, put on deodorant when your hands shake so badly that you are afraid you will leave your face in ribbons? How do you get dressed when your legs and feet feel like alien beings stuck onto your body by a cruel prankster? How do you work when a gray fog mutes your perception of the world, literally pressing down on your eyes and ears? How do you face your kids and tell them everything will be all right, knowing full well that you have to move out of your home, and you aren’t even sure from where the next meal is coming? This is the stuff of dis ease, and it doesn’t even address the effects on the people who are connected by their care for the afflicted one. Like an exponential dance, dis ease spirals into a crushing weight that threatens to disrupt everything good and right that we know. One dear friend, in writing about his beloved spouse and her dis ease says, “I don’t know how she does it. I don’t know how any of the people that we know with their horrible challenges do it.” I don’t know either, so I have, in the words of my former algebra teacher, “let X stand for the unknown value.”

In math, when we have an unknown, we seek to bring it to light, to make it a known quantity. Math courses are predicated on this quest, throwing ever more complicated problems at the unwitting until they are just too complex for solution. We work puzzles with the same expectation. We know that at some point, we will need assistance, and that there are some challenges beyond our ability to find their solution. I think it is possible to look at life (probably somewhat cynically) as a series of challenges that you successfully meet, or that at some point are just too complicated to solve. Death, from this point of view, is a series of variables that finally overwhelm the body past any point of recovery. All of us living in the a chronic dis ease world, understand this phenomenon. While our temporarily able bodied brothers and sisters face their life challenges through a slow progression of solving for a new “X,” in the dis ease world, the progression is squared, cubed and so on. Our X factor has to be really fast, anticipatory, and out in front. And our X factor also has to be somewhat fatalistic. While all of us can see the end when the complications are beyond us, those of us trying to manage our dis ease are solving for X to the power of 2, 3, 4 and beyond. We know how this ends, even when we don’t want to admit it.

For the sake of their privacy, I am not going to call out the cancers and depression, the broken relationships, and the homelessness. But I speak directly to each one of them here.

I want you to know that you are my brothers and sisters in arms. I am amazed at your resilience and fortitude, your positive attitude and your courage in facing death and debilitation. I am humbled by the strength and beauty that you show us in spite of the loss of function, the nausea and hair loss, the smells and the sounds of pain and suffering. I am inspired by the fact that you keep your kids close and protected and positive as you work through your losses. I am honored that you share your journey back to trust and health, in spite of the pain of betrayal. All of you know that the normal day-to-day world of the temporarily able bodied is no longer yours, and yet, you keep on. You love your families; you honor your friends, and you show us every day that life is a precious gift that requires a commitment to its living. You show the true X Factor, one that I hope someday to emulate. You know full well that the only ones who will really get it, who will see the the power of your X Factor, are those that are most affected by your dis ease, the ones who love you more than life itself. And you honor their love for you through your resilience.

I don’t expect Simon Cowell or the Voldemort Network to ever get this. They can continue to dabble in the X factor as entertainment, stimulating some part of our psyche that needs ever more and more of whatever it is they are peddling. But I would say, if you really want to see the X Factor in life, then hold the hand of your beloved as she fends off the newest cancer, mop your friend’s brow as he fights through the nausea of chemo-therapy, or just sit quietly with your eyes on God incarnate as your love’s breathing slows to nothing. You cannot really capture this on television, but should you take this opportunity, perhaps you will get a glimpse of the X factor, and you will marvel at just how beautiful the math can be.