“THE REPORTS OF MY DEATH ARE GREATLY EXAGGERATED.” Mark Twain (by Ev)

Happy New Year!  My update is long overdue. Judging by the reaction of some, to Bruce’s last blog entry, I feel I need to clarify how we are doing right now.

One of Bruce’s all-time favorite movies is MONTY PYTHON AND THE HOLY GRAIL.  There is the memorable scene in the plague-ridden town where they cry, “Bring out your dead!  Bring out your dead! ” One old man carried out on a stretcher says, “But I’m not dead yet!”  That’s Bruce.

It is hard to hear the dreaded ‘H’ word – the H, of course, being Hospice. In the United States, we don’t do hospice well.  We wait far too long to take advantage of the hospice benefit.  Sometimes, the person who is dying is not even aware they are in hospice, because hospice wasn’t called in until the patient was in a coma.  We hear “Hospice” and we all jump to the conclusion that death is imminent – a matter of a few days.

Bruce is still here and still very much alive.

Hospice is a philosophy. The main idea is that when a person is within 6 months or so of death, they ought to be made as comfortable as possible so that they can wrap up their life, say the things they want to say,do the things they most enjoy doing, and be able to say their goodbyes to the people they love in a planful way.

We began hospice in mid-September and often wonder why we didn’t start sooner.  Our lives have greatly improved since beginning hospice.

There are the little things, like not having to remember to refill prescriptions and figure out the logistics in order to pick them up. Hospice delivers all our meds and supplies to our door and pays for them as well.

No longer do I need to worry about how on earth I am going to get Bruce to a clinic to check a possible ear infection, or a skin rash or a sinus infection.  Hospice sends out a nurse practitioner to check on him in our living room.

Weekly visits with our  lovely hospice nurse allow us to ask worrisome questions, draw on a wide variety of medical expertise and specialties, and then decide on a course of action as a team.

Instead of carrying the whole heavy burden of Bruce’s ALS by myself, I suddenly have an entire caring team to help ease my load.  We have wonderful aides who come and shower Bruce, 2 fabulous masseuses who soothe his pain with healing massage, grief counselors and a social worker who check on my emotional and physical health, as well as the well-being of our sons and daughters-in-love.  We feel so supported!

And yet………. Death is here, in the corner of the room.  Death is patient; it isn’t Bruce’s time – yet.  Once in a while, Death nods his head, gives us a wink – as if to let us know, “Hey, I’m in no hurry. Take your time.  I don’t mind waiting.  I’ve got a whole briefcase full of cases I can go through while I’m waiting for you, Bruce.”

We welcome your loving messages. Better to say the things you need to say now, when Bruce can answer you back.  I am creating a scrapbook of your loving notes to share with my kids, their wives and my grand-kids (born and those not yet a twinkle in someone’s eye).  If you haven’t written a “Dear Hypatia” note yet with your memories and impressions of Grandpa Bruce, please do so now.

Bruce is still very much involved in life.  His book, WE KNOW HOW THIS ENDS:  Living while Dying is available for pre-order from the University of Minnesota Press as well as on Amazon.com.  Bruce is involved in plans for launching the book and for creating an ‘enhanced E-book” version as well.

He tires more easily these days and is entirely dependent upon his Trilogy machine to help him breathe. As his muscles waste, his joint pain increases so he is taking more medication for pain these days.  But Bruce enjoys visits with friends and colleagues. Please call and arrange a visit. Just watch for signs that he is tiring.

Thank you for all your prayers,  positive thoughts and caring messages as we walk together towards the Next Big Adventure.

(If you would like to receive automatic updates, please click on the following link:

www.caringbridge.org/visit/brucekramer

 

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Happy Complicated New Year!

In the four years since my diagnosis into dis ease, I have sought to make the best of a bad situation. In writing about the experience of ALS, my commitment has been to be as honest as possible, even if I felt the situation showed me in a less than flattering light. I admit that at times, I pulled my punches, relying upon my reader’s ability to fill in the blanks, not making me describe in graphic detail some of the more physically compromising situations I have experienced. I appreciate the space you have granted me in this respect. It has allowed me some semblance of dignity in even the most immodest of situations. But now in the past four months, I find myself more reflective than I have ever been in my life. And this reflective quality has made me question whether I have been honest enough. I am on the fringes of my life, and my feelings are confusing yet beautiful, frightening and powerful, profoundly spiritual while grounded in day to day experience.

In other words, my dis ease becomes more complicated, and communicating clearly about it confounds me.

The elegant hand of ALS holds great surprises. I never knew that so much grace and peace and joy could be found in the inexorable experience of dying slowly. Dis ease plunges me into a pool of beautiful sadness. It focuses me so that each day, I awaken with profound gratitude for my true loves, my one and only, our sons and daughters in love, our energetic, remarkably bright and ever-growing granddaughter. I am overwhelmed by the thankfulness I feel for friends, those who volunteer to care for me, those who engage me in their day to day life challenges, those who share gifts of music and poetry and yoga and life possibility. Yet simultaneously, an undeniable fatigue dogs me, washes over me, nips at my heels, impedes the energy I might muster for the very things that so delight me. The daily life challenges I experience – total dependency on others for the simplest of tasks, the continuing breakdown of basic physical functions such as swallowing and breathing and the like – exhaust me into sweet anticipation of the relief that will come with my death. Death has become a good friend, a harbinger of the final joy awaiting me, assisting me to shed the ALS revealed imperfections of my physical body. The spiritual conflict is clear – I am utterly in love with this ever deepening experience of living while at the exact same time I happily anticipate the relief death will bring.

I tell you this not to elicit sympathy, not to shock but to describe, in as honest a way as I can, what it is like to be a 58-year-old man with advanced ALS – it is complicated.

I suspect that this complexity is one of the reasons that we humans don’t like to think about death, talk about death, place death on the altar of our lives and give it the due it truly deserves. Death’s consideration seems so antithetical to life, to living fully, to the joie de vivre that all of us believe we deserve. For me, it wasn’t until I was confronted by death’s reality that the juxtaposition of life and death became even a little meaningful. And I also suspect that for the vast majority of us, this first juxtaposition takes place when a family member or dear friend faces their own mortality. Even here, the complexity is not readily apparent since it is someone else’s death with which we have to deal. Our feelings focus on disbelief and anger and grief at the loss of loved ones. Meanwhile, our own mortality might be briefly considered, but it is just too easy to ignore.

In the days before I believed in death, if I gave any thought to it at all, my belief would have been that death was singular, individual, and that it’s only lasting effects were a loss that those left behind would eventually get over. This was my own experience, in spite of the fact that death had been with me since the age of 14 when I suffered the death of a friend. As I matured, I witnessed numerous family members passing from this life. I had ample experience of other’s deaths, but no encouragement to believe in anything remotely resembling my own. The concept of living while dying was too complicated to incorporate into my day to day living.

Now, I am a believer.

The simple realization of ALS requires unvarnished honesty just to deal with each new loss. Living while dying is no longer a theoretical concept but a necessary reality, and it can be confusing. The conflicting feelings that frame the final months of my life have emerged a new reality. As much as I would like to go it alone, this new space is so complicated that support is a requirement and not an option. Going it alone makes no sense. Without support, life for me and those I love was becoming too chaotic. The noise of the chaos overwhelmed us as we sought to discern appropriate levels of care that conformed to the energy we possessed and the resources we had at hand.

This is why we engaged hospice care.

The decision to move into hospice provides experience and expertise to help us make these final decisions as the endgame becomes clearer. I say we, because ultimately it is our family that has engaged hospice care. My own imminent death, coming whenever it shall come, is not our only consideration. From the beginning, ALS has affected not only me, but family and friends. Hospice affords support for all of us. Now, there is a stability in our lives that was not present four months ago, and while the complications have not gone away, the meaning of our lives together continues to deepen. Our decisions are no less complex, but our caregivers, nursing staff, and others who are part of the hospice team provide a quiet, dignified and knowledgeable resource as we negotiate the inevitable irritations and discomforts that go with advanced ALS. Meanwhile, they support us in anticipating the larger challenges that lurk on our horizons. Inevitability and anticipation, love of life and welcome death is what we now consider, with all their joyful complexity and sad simplicity.

The challenge is to not allow the inevitable day to day comfort issues overwhelm the meta-dialogue about what it means to die well.

Our hospice nurse has a knack for asking questions that hone in on the issues that lurk below the surface, that define both a good life and a good death. These are the conversations that transcend the rashes and sore muscles and joints, the curled fingers and swollen hands and feet, leaving them in the functional dust of symptom and relief where they belong. It isn’t that symptom and relief are not important, it is just that once we have decided on the analgesic and patches, the padding and massage, the pills and painkillers to deal with each irritation and pain, there still exists a vast chasm between what generally emerges in conversation and what is left unsaid. This is where our nurse demonstrates such skill.

We have discussed what it means to die well. The endgame of ALS is too often framed by a sense of powerlessness. We feel powerless against the inevitability of each symptom, each loss that is in our future. There is no legal or moral reason to feel powerless, but our choices are often limited by the fact of who is treating us.  Hospice ensures that we can evaluate whether or not treatment unnecessarily prolongs pain and suffering or whether it provides relief. It should be our choice as to whether we receive any treatment and what that treatment should be. For me, a ventilator is treatment; a feeding tube is treatment. At some point for all of us, the balance tips so that in spite of the fact that we have a tremendous love for the life we have been given, it has also become so painful and difficult to live, that further treatment is actually cruel. To die well means to choose what happens as the ending becomes inevitable.

This blog has been one of the most difficult that I have ever written. It opens all kinds of questions that each one of us will face. Unless the goal of dying well has been rejected, we have to talk about these things. Death affects everyone, and the complexity of loving life and welcoming death is confusing. If we value dying well, filling out a form style, so-called  Living Will, does not accomplish the kind of deep conversation that all of us will need as we approach  our own deaths.  I have known that this time was coming for me, and there is still much that I wish to accomplish. This is hard stuff, but it ought to be. Life is a remarkable gift. The choice to end procedures that prolong it is very personal and requires great care and respect. Most of all, it requires honesty.

One of the reasons this is so hard to write is that each one of us carries our own baggage, our own interpretations of what it means to consider our deaths. Many of us don’t realize the resources that might be available to us (my hospice care is covered by Medicare for example). I don’t ask for your agreement with what I have written above, but I do ask that you respect my thinking about my own choices. And I do want you to know how helpful it has been to engage these questions with our caregivers from hospice. Too often, people are afraid of the reality of their life’s end and this causes them to avoid the support that is available until it is almost too late. The end of life is a confusing time, and we do not have to go it alone.

For me and my family, we now experience the support to better negotiate the next steps looming before us.

PS: please vote for this blog @Healthline.com. Currently, it is number 23. You can vote once per day, and there are 11 days left in the voting. Many thanks.

http://www.healthline.com/health/best-health-blogs-contest

Christmas Letter in June

Dear friends,

I have not written a blog entry for two months, the longest period of time since I began writing in March 2011. Just as writing is tremendously informative, not writing can also speak in waves, and so I thought I had better give an update just so you wouldn’t think I had died. As I think you are aware, I have continued to write as a way of keeping my wonderful network of friends updated as to how things are going, how ALS is treating me, how my family is doing. And even now I want to give you that kind of update. But as you know, writing for me has also been deeply therapeutic, and that kind of healing comes with a cost. It takes a great till of energy to turn the everyday meaning of something so ordinary as the progression a disease on its head. The ability to do so has been one of the keys to what I believe could have been devastating. But I have reached the point in my progression where I only have so much energy, and I have reached a place in my thinking where I feel the need to summarize, to look back on this opus and to make sense of what it might mean more fully.

So I guess my first piece of news is that in collaboration with the very talented Cathy Wurzer, we have been offered a book contract based in these writings and the 25 stories that she has broadcast on Minnesota Public Radio. My plan is to finish the book this summer and then return to blogging. There are possibilities in such a plan, but I also know that the stars must align just so, ethers must conflagrate just so, and I must conserve precious energy that is so fleeting in order to realize this project. This is easier said than done.

My care needs have increased to the point where I am never alone. For the past semester, Evelyn has worked a 75% contract. This was in response to the fact that in the fall, she fell ill, contracted pneumonia, and never really could shake being sick. Her district very compassionately worked with us to find another teacher with whom she could split her responsibilities. The needs of a full-time job, coupled with the responsibilities of being a full-time caretaker can really wear a person out, and we both agree she is better with reduced teaching load. And of course, I will take every minute that I can get with her so I am the better for it as well. I continue to be well cared for by a combination of personal care assistants and volunteer friends, who also remove some burden from Evelyn. Their commitment and skillful care combined with the fact that we genuinely like each other makes this loss of independence much easier to handle.

Even though I am retired on disability, I have continued to think academically. For the past year, my dear friend Ernestine Enomoto and I have been working on a second addition of our 2007 leadership ethics book, Leading through the Quagmire…. With the help of our friends Deb and Sharon, we have greatly expanded the book and now await its publication, hopefully next month under a new title, Leading Ethically in Schools and Other Organizations. It was wonderful to work with Ernestine again, and I received tremendous support from my friend Jeanine who became my hands as I sought to fulfill my responsibility to the writing. Adding the chapters that Deb and Sharon penned was a real bonus.

After my wheelchair accident in April, the realization that I am down to one usable knuckle for driving the chair has become painfully obvious. I am now using what is known as a micro driver for my chair, and this has returned some driving ability to me. Currently there are two people who are comfortable using the attendant control on my wheelchair, but we are hoping that number will increase in the near future. In the meantime, we now have a manual chair as a supplement for those who are uncomfortable with operating my power wheelchair, and hopefully this will allow me to get out a little more.

My progression has now reached a point where I must take great care when I eat. A choking incident that took a very long time to clear was just the latest signal as to just how I must continue to embrace ALS. At the same time, my ability to speak with presence has finally dropped away. I speak softly, become tired with speech, yet I am totally dependent on speech recognition for writing and interface with my environment. In the next couple of weeks, I will again try to work with eye gaze technology. Eye gaze requires even more patience than speech recognition in order to make it work. Those who have mastered it have my deepest respect. I see it at first as a way to save my voice. For example, if I can turn the pages of the current book I am reading using this technology, it is one less use of the voice. If I can read the New York Times with this technology, it is one less stressor, and I can conserve my vocal use for writing and speaking.

To better support my breathing, I am now using BiPAP at night. So far, it is going well. It leaves me with a little bit more energy, and I must admit that the feeling of full breath is very pleasant. Of course, my competitive nature hates the fact that I have just lost four points on the ALS Functional Rating Scale, but I find solace in quoting Kurt Vonnegut. “So it goes.” And I have to say that when I combine the BiPAP with the diaphragmatic pacing system, the feeling of breath is wonderful.

I look at the news above and realize that for the able-bodied, such news might seem just a little horrifying. Would you be reassured to know that once I made the decision to embrace my condition, to learn its lessons, to cry when it seemed appropriate, and to laugh whenever I could, the horror dissipated? I recognize just how lucky I am. In spite of the fact that I know how this ends and that it ends much sooner than I would have liked, I have been granted great gifts, phenomenal love, faith that has not left me, a family that only cares for me more and more, and of course the gift of finding a one true love. All of this is to say that like life, ALS is far more complicated than most of us are willing to see.

I continue to practice yoga, and now try to pen a meditation about my practice as a person with disabilities once a week. This is writing to which I commit, because it helps me in the discipline that yoga has brought to my life. I will never be able to fully or adequately thank my teachers at Mind Body Solutions, but they have assured me that gratitude flows two ways. In addition, I have developed deep friendships so unlooked for yet so soul feeding. One of the lessons of ALS is that if you wish to live fully until you die, you have no time to waste in meaningless conversation. You have to get to the dance right away. I am remarkably blessed in this regard, and it has helped me to accept the choices that dis ease foists upon me. I have been granted a richness in life for which there is no complaint. I accept what I have been given, and I am grateful for it.

I probably will not be writing much in the blog for the next couple of months. That being said, I can see where I might require advice as I write body and soul in a book. At the very least, I hope you will grant me and my family your best wishes and know how much it means to me that you choose to spend your precious time with me in this life spiral.

It is the greatest privilege.

Yours in ALS,

Bruce

July 4

July 4

It is July 4th, and in the last two weeks, maybe even in the last seven days, more than one friend has told me I seemed a little “dark.”

And I thought I was hiding it so well.

So I will admit that I have had thunderheads round my eyes, that I have felt less connection, less space, less. I admit that something I knew but couldn’t acknowledge was taking place. I admit that I just wasn’t moving through the harder times, the more challenging times, the situations that were clinging to me with all of the grasping, cloying, olfactory, primal qualities of old smoke in the morning – hard to get rid of once it is on you, yet pleasant in small amounts as memory or flavor. I did not see the same darkness as my friends, but I now realize that the last set of losses, the last paper cuts, have been particularly hard to take.

I always overestimate my readiness for such things.

If you know anything about the physiology of the brain, you know that there is a great deal of motor cortex real estate devoted to the thumb, and I suppose that is why I have been able to keep some thumb function up until this point. There’s just a lot more that needs to be taken down in order for ALS to have its way. But now, my left thumb shakes, and it chooses its own direction in defiance of my desires.  And on my right hand, while my thumb is still somewhat functional, fatigue sets in quickly, so it’s functionality cannot be trusted. Add to that, the fact that my left side is always a little bit ahead, specifically that my left hand keeps informing my right of its future, and you have a recipe for a living Caravaggio* whose loss is less violent, less sudden, but no less significant.

So now here is the reckoning – no arms and no legs, no feet and for all intents and purposes, no hands. In the meantime, my neck grows weaker and and my sleep is inconsistent. I won’t even go into the challenges of ALS logistics. Each small loss must be translated into these larger, taken for granted arenas that most adults plow their way through (except for flossing) without a thought in the world except, “do I look as good as I possibly can.” At night I look up at Ev and sigh, “Sometimes, it sucks to be me.”

I’ve told you many times, I am no saint.

And yet, I cannot help but perceive a certain sense of purpose at work in all of this. It is as if a confluence of universal ethers has come together in a very personal way to teach me another lesson and another and another. My history is one where I stepped up in my youth and learned the skills required to keep a family running, and then I pushed those skills out into my own life. I realize now that many of the failures that I perceive in my first 50 years, were really my inability to translate my need to care into anything but my needs. I didn’t really learn how to care with any modicum of success until about 10 years ago, when I came to understand that human fulfillment is in the ability to translate deep care for all those with whom we cross paths, but in a way that allows such care to be reciprocated.

Please don’t read into this anymore than what was going on in my mind and my heart as I moved through the life that I knew.

Imagine that you have mastered some impossible technique, some skill set, some knowledge base, some attitude to a point where it has become like a second skin. Imagine that you are still approaching the apex of your purpose, your raison d’être, your life wonder, your grand opus, your artistic fulfillment, imagine. And then the universe writes across the sky a secret message that only you can read, “Enough! It is time to learn the real purpose.” Your head would swivel, your thoughts would lose their direction and alignment, and you might even be afraid.

I am afraid.

When my friend and teacher Matt asked me how I was doing, “not physically, but otherwise,” he stated that I seemed to be projecting darker.  I don’t like to characterize mood as dark or light, black or white, or any other arbitrary, colorful categorization. But when he said this, I realized that my grief was more present, more surface, more perceivable. It has not helped to see friends with ALS fulfill their destiny, nor to see brave caregivers in their own grief, and let me be honest, in relief that such a journey does have an ending. If you chose to perseverate on this reality, it could push your soul out of your body. But when Matt made his observation, I also realized that that while deeply challenged, I still do not despair. I have not moved through the latest losses as easily as before, yet I still see myself moving through. While the great lift that comes in the rise of the breath and the flooding of the lungs with blessed spirit has been slower to arrive, I have not lost my faith.

The fact is that none of us is truly finished until the great lessons have been learned. I learned how to push care, even for those who didn’t want it, so that my life was defined in a single dimension. Dis ease has brought me the spherical lesson over and over and over again, that care for requires care of, that caregiving requires caretaking, that caring space is not only physical but deliciously, consciously spiritual. I have faith that I will move through and become even more the person I want to be, the person I need to be. I am not finished; life is not done with me yet.

Today is July fourth, the day that our still very young and fragile and maddeningly frustrating democracy celebrates its own birth. There will be speeches and fireworks and movies and concerts and all manner of patting ourselves on the back. I will not be swept away by the speeches or music (except for Copland’s A Lincoln Portrait), but I cannot help but see the direction we are headed with the hope that at some point, our immaturity will give way to that which holds true meaning – that faith and love have far more significance than avoiding pain and suffering and death. That the remarkably gargantuan resources that we plow into death avoidance could be repurposed into life embracing, refreshingly chilled water awakening us to our possibilities, such simple love that when given, only multiplies and grows. I see this in my sons and daughters-in-law and dear friends and most of all my one true love, Ev.

It isn’t dark at all, and it isn’t light. It is faith in what will be, and the love that will come, and it isn’t as bad as I thought.

*Michael Ondaatje’s thumbless thief in The English Patient.

Susan, Dudley, and Eric

Sometimes, the choices presented by ALS’s complexity are overwhelming. This past couple of weeks have presented this reality, and while it is not been difficult to write, it has been difficult to write in a way that might effectively communicate the complexity at hand. This is my latest attempt, and if a little bit of anger peeks through, I hope you will be forgiving and know how hard I tried.

I just finished Until I Say Goodbye by Susan Spencer – Wendel, a journalist from South Palm Beach, Florida. In 2011, she was diagnosed with ALS. She is brave, with chutzpah and bravado, and that most human of desires to remain independent, to choose her own path even as ALS paves the road ahead of her. I get this attitude. It is incredibly difficult to make space for dependence in our lives, especially when we are used to the independence that we believe defines who we are. It reminds me in some ways of journalist and fellow Person with ALS (PALS), Dudley Clendenin.

You might remember Clendenin. Diagnosed with a particularly aggressive and virulent form of ALS, he wrote “The Good Short Life,” a column first published in the New York Times detailing how in the face of “Lou” he would seize his own death. While not revealing the manner by which he would kill himself, he was very clear about his need to take responsibility for the act. He expressed the same independence that I cannot help but read in Susan Spencer – Wendel’s book.

Spencer – Wendel has decided to kill herself also, albeit in her own way. She does this through a year of “living joyfully,” rejecting all medical treatment and, if she is to be believed, any willingness to help others through participation in trials or other such things. Her manner of suicide is not a gun or hanging or overdose or the other usual suspects. Instead, she accomplishes a hastened death through extended travel to see among other things the northern lights, Budapest, her favorite beaches, and the island of Cyprus in search of her birth family (she was adopted as a baby). Sometimes, she travels with her family but mostly without, clearly in tune with her own needs to make meaningful memories before she dies.

I need you to understand that I have no problem with a person with ALS exercising as much control over their own lives as possible, even if it means hastening their own demise. Until you face ALS and own it as your own personal dis ease, I don’t see how you can judge such words and actions. Until you face ALS, agreement or disagreement is purely speculative. And therein is a seed of understanding why I have had such difficulty and anger in writing about a fellow PALS.

When Dudley Clendenin wrote about his decision to off himself, it was because he did not want to become a “conscious but motionless, mute, withered, incontinent mummy of my former self.” Aside from the fact that incontinence is not usually a side effect of ALS, Clendenin only expressed the fear that all of us with ALS secretly or not so secretly carry – that somehow we will become “locked – in,” trapped in our bodies with no way out. At that time, the columnist David Brooks seized this imagery as a shining example of how those of us who are in a permanent state of incurable illness, should realistically address our responsibility toward lowering the cost of healthcare.

Like Clendenin, Spencer – Wendel also expresses such fear, and like David Brooks, mainline journalists respond from their own able-bodied frameworks. In an Amazon.com interview with Cokie Roberts, Spencer – Wendel is asked, “Many people with your diagnosis would either crawl into a cave or go from doctor to doctor trying to survive a little longer…” She answers:

The problem with a cave is it has no windows. And the problem with knocking on umpteen doctor doors is that there is nothing behind the door…I am not giving up. I am accepting…Also a major factor is my husband. I so want him to have a chance at another life. Not saddled with the weight of an invalid wife.

Scott Simon of National Public Radio, in his Weekend Edition interview with Spencer – Wendel declares, “This book is so funny,” immediately after asking Spencer – Wendel’s husband how he is doing, receiving the following answer:

“Well – difficult. Every day I wake up, I feel sad. That’s my first emotion. And then I roll over, and I look at Susan. And I realize that she’s not allowing herself to feel that way, so I can’t – and I don’t.”

Hilarious, right?

I think my greatest disappointment is in the not so subtle ratification that a life framed in disability is so easily judged to be less then living. From an able-bodied perspective, the storyline reinforces a Temporary Able Bodied myth long on issuing a hall pass for terminal living – no responsibilities, no problem – and short on looking at the consequences of such easy assumptions. It reinforces singular focus on the person with dis ease and conveniently disregards the family, friends and colleagues also affected. It reinforces the idea that life with massive disability is life not worth living, unhappy and unfulfilling, meaningless and unengaged. As Ev says, “Spencer – Wendel and Dudley Clendenin are journalists, and by virtue of that fact anything that they publish becomes authoritative.”

They do not speak for me.

I know another story of blessings and complexity and empathy. In 2009, Eric Lowen of the folk rock duo Lowen and Navarro, participated in a New York Times perspective called “The Voices of ALS.” Listen to his words.

The hardest part for me is the pain I bring everybody. The fact that my children have to deal with it and my wife, I wish I could disappear quietly. But it doesn’t work like that. That’s the most horrible for me.

He continues:

I thought at first I was going to live every day to the fullest and not let anything stand in the way, but then I got a hangnail, then I got a stomach ache…life is pretty much the same no matter what and the thing that has helped me the most is a quote from a friend of mine. She said, “We’re all on a journey. You just have a better map.” I think that’s the way it is.

I so get this it makes me hurt.

What seems to get lost in able-bodied frameworks is the message that life goes on, that ALS can be a life sentence, not just a death sentence. And while we cannot all be poets, Eric Lowen sang ALS in such a profound way until he could not perform any more, engaging in new life even as ALS slowly eroded the old life that was his. He wrote:

And it’s beautiful how new blessings unfold in ways I could never have known,

but I’ve still got some time on my hands,

I’ve had to run, I’ve had to crawl, been rich as a king and had nothing at all,

still raisin’ hell and tearing down walls, I know where I stand, I’m learning to fall.

– Lowen and Navarro, Learning to Fall

There is a postscript to all of this. Dudley Clendenin, a man who could not see himself living with ALS, prolonged his life, even agreeing to a feeding tube. Why? I cannot be completely sure, but he was offered a book contract to tell his remarkable story. The book contract offered him the opportunity for re-engagement with humanity on terms he was able to quasi-define. He died in May of 2012 with his boots on, having sent the galleys of his new book to his publisher.

And that is the real point. We can either die while we are dying or live to the fullest. But massive disability is not the determinant. It’s learning how to fall into new blessings.

You can watch a video of “Learning to Fall” here.

The Hero

Senator Gary Kubly died Friday. A Lutheran pastor who served in the Minnesota State Senate, he offered to step down after his diagnosis of ALS. But his senate colleagues urged him to stay on, saying that though his voice was softer from his dis ease, he still offered that rarity in politics—one that sought to reach across difference and find paths that bring lawmakers together. His work and interest in environmental issues is more than ironic given the current thinking about the environment and ALS, and he agreed to continue on, in spite of how hard it was to function day to day. Senator Kubly was one of my secret heroes.

Dis ease has introduced me to so many people like Gary Kubly—people that I have never met, yet have inspired me through my own dis ease journey. Some of these remarkable souls have made it to television as heroic figures in their own right—Steve Gleason of New Orleans, diagnosed with ALS just a year ago after a decent career in the NFL; Steve Smith, former Penn State and Oakland Raiders running back, now completely paralyzed by his ALS, yet still seeking to educate and advocate about the significant correlation between violent sports and ALS when compared to the general population, seeking to force the boys who run the NFL to acknowledge the neuro-degenerative hazard. There are others—My Cup Overflows, a Mennonite pastor “flowing through” her recurrent melanoma; the blogger Pink Underbelly–introduced to me by one of my former students and recovering from breast cancer with an attitude that shakes a finger in the face of dis ease. Jason Becker was diagnosed at the age of 20. A musician who continues to compose using a system of communication devised by his father, he is now 42 years old and the subject of an upcoming documentary. And I have mentioned Kathy Hult in this blog—she has raised millions for ALS research. I cannot say enough about Persevering, an engineer diagnosed with ALS, who has turned his prodigious talents toward the reanalysis of our assumptions concerning the dis ease. I have watched the ALS Research Glitterati hesitate and acknowledge that the numbers don’t actually add up, because of his work. These remarkably ordinary humans are extraordinarily accomplished, in spite of how their dis ease lines their lives up like dominoes ready to fall in a despairingly ordinary pattern. To rise to amazing accomplishment, when all around you encourages sub par performance, is heroic.

Many of you have told me that you look forward to these weekly forays of my soul, because they offer you a perspective on your own dis ease moments. I am glad. If there is something that gives friends strength as I weaken with the ongoing “progress” of ALS, well that only seems rightly symmetrical to me. And I have to admit, that my symbolic step gains an equally symbolic small spring to it when someone contacts me because I was able to turn a phrase in a way that energized their understanding of their own journey. But when it really comes down to it, a primary source of my own strength to cope is the unsung heroes of extraordinary accomplishment I have named above. Each one of them gets the horror of this whole thing. They get that negotiating dis ease is almost totally an attitude thing. They understand that each day is not a given, but something that has to be carefully planned in order to not tip too far along the way of despair, frustration, fatigue. They get angry, and they cry, and they laugh at how ridiculous some of this seems, and most of all, I don’t have to explain one damn thing to them.

They just get it.

When I look at these incredible souls, they all have something in common. Underlying their right attitudes are friends, parents, brothers and sisters, sons and daughters, people that really care about them, and that they can care about right back. And these friends, parents, brothers and sisters, sons and daughters, people that really care keep my heroes grounded in this world. How does this work? I can give you three examples.

About once a month, a posse of my former choir members comes to downtown Minneapolis and takes over my conference room to break bread, laugh, catch up, hug, and just to feel the love. We started out in a restaurant, but decided it was too expensive, and this space is quieter, more easily attended, more easily shared. I love the choir posse. Without an overt prayer, they bring psalms of joy whenever we get together. Then there are my kids and their incredible partners. On Friday, we took the leap out into the great, grubby masses at the Varsity Theater to hear the Punch Brothers in concert. It was extraordinary! Even more extraordinary was the way that Ev and Kirsten and Athena and Dave and Jon flanked my wheelchair, clearing drunken concertgoers out of the way and reassuring me that this sea of unwashed humanity would be parted, and they would get me through. I anticipate anxiety in the crowd experience, but they might as well have just linked arms over and under and marched phalanx-like, clearing a path like a Minnesota snow thrower. Kirsten even got in the face of a guy who just couldn’t seem to figure out that every time he spilled his beer it was on my shoe. God, they fill my soul. And then there is my best friend, lover, now caretaker, incredible partner Ev. She just won’t let me be less than I am. She encourages, supports, cries, holds, sees the humor, perceives the pain, and keeps us on the right path. And somehow she accomplishes all of this with graceful beauty and wisdom, and gratefulness that we have awakened to another day to explore the next big adventure.

See the theme here?

A minister friend of mine, lost to me from long ago, but still very much present in my psyche, got in touch with me out of the blue this week to wish me happy birthday. One of his observations really resonated with me. He said, “I don’t know, I’m 70, but when I think about it, I’m still pretty pissed at God for the way this world works.” Me too, but then I think about my heroes who, in spite of the next big thing to go wrong, continue to find their way down their uniquely human dis ease paths. And I’ve really come to the conclusion that part of it is pain control, and all of it is realizing that we humans need to stay in the presence of people, and actually, that is how God made the world to work—if you believe that way. What I really mean is that there are social consequences of dis ease. When we feel that we are truly alone, walking the path without anyone beside us, when we feel that raw sense of solitary isolation, cut off from the world and worse, cut off from the humanity that could humanize this whole experience, it is impossible not to despair. My heroes all have posses, friends, parents, brothers and sisters, sons and daughters, people that show them the love. And yes, they love right back.

Gary Kubly loved enough to stay in service until the day he died. Steve Gleason says it is all about staying connected. My Cup Overflows states that it is about letting go of the anger, and just letting the treatment do its job. And I read them, and I cry, and I laugh, and I remain thankful that so many have chosen to stay the course with me thus far.

You are all my heroes.

The Sum of My Fears

When I was told that I had ALS, I was devastated, and not being given a lot of information by the diagnosing neurologist, I naturally turned to the internet to discern what was going to happen to me. There is a great deal of information (and misinformation) about the progression of ALS on the web. During those first few weeks post-diagnosis, each new revelation about ALS was hard, raw, and terrifying. And I thought it was all about me. Of course I come to this me-first perspective honestly. We are taught that tragedy is about our own reaction to it. But with all the Youtube video, the websites, the pictures, the personal stories about ALS, there was something that emerged for me that heightened my fear. Slowly I became aware that my ALS wasn’t only about me. It is about us. The shock for me was the realization that when we face dis ease, we face it not alone, even though we might feel that way, but in tandem with others, and those others suffer just as much if not more in the dis ease process.

I’ve been really lucky in my life. I have a great wife, great kids, and great job. When Ev and I got married, we vowed to each other, “for better or for worse.” I know that, at least in our country, nearly every couple makes this commitment–for better or for worse. We usually take it farther, clarifying “in sickness and in health.” After my diagnosis, I found myself hovering over my memory of our marriage vows like an out of body experience. I remember actually looking down at these two earnest young people, Ev and me, so in love, so naive. I couldn’t help it. I actually wondered, if Ev had any inkling of what was to come, would she have cast her lot with me? On one level, it really isn’t fair to ask such a thing, but on another, it is entirely reasonable, for such is the kind of thinking, feeling that comes in the traumatic aftermath of dis ease diagnosis. And as I floated between memory and presence, I realized that the knowledge I was coming to understand was not only my fear of what ALS was doing to me, but it was the dawning realization of what ALS care was going to do to my beloved partner and my wonderful sons.

This is not an idle fear. Research on the effects of chronic and devastating dis ease on people and their caregivers shows that, while patients can generally reach a certain level of acceptance with a reasonable emotional response, the same cannot be said for caregivers. In other words, PALS, people with Alzheimers, diabetics, and others can find satisfaction in their lives, in spite of their condition. But the same research shows something very different for their friends, families and lovers. Those responsible for the care of the chronically ill are far more susceptible to despair, with their emotional quality of life actually diminishing over time. This shouldn’t be surprising. The responsibilities can be crushing, and the redefinition of roles can put enormous pressure on caregivers. This is not to minimize the effects of the dis ease on the afflicted. I have corresponded with too many PALS who are at the end of their emotional rope to diminish the effects of dis ease. But dis ease has the subtlety of an atomic bomb. It smashes indiscriminately, befouling everyone within the familial and friendly circle.

I have personally seen this happen not only with my own family, but also specifically with the adult children of people with dementia. The pain and confusion of redefining a relationship with one’s parent is difficult. The realization that your mom or dad is no longer that person that took care of you, was there for you as your greatest critic and fan, who instead now needs the kind of care that you always associated with young children, comes hard. And with dementia, often the tipping point where care needs to be raised and roles redefined, is hidden until almost the moment it is needed. Logistics, finances, emotion, and confusion about the changing roles of caregiver and mom or dad or partner or spouse come together in a perfect storm of emotion and stress. Dementia strikes, and everyone near gets dementia all over them.

When I hear politicians and policy wonks complain about the cost of dis ease management, I feel like they are talking about Martians. They seem to believe that we can blame those who are ill with the repercussions of chronic dis ease. They bemoan the dollar costs, while pretending like the rest of humanity will never be dis ease afflicted. It isn’t logical. Given the experience of aging, chronic dis ease is in everyone’s future. If it doesn’t affect you as an affliction, the chances are very good that it will affect you as a caregiver. We rarely think of how systemic are dis ease’s demands. Instead, we act as if chronic dis ease happens to “those people,” others who are on the margins of our own existence. At least, and I am sorry for this, that is how I was.

The real issue is how to make dis ease management normal, normal for a society, and normal for a family. There is an entire side to dis ease management that is missed, because once dis ease is known, it takes on a presence, almost like another person in the room. It worms its way into the intimacy of your relationships. It shadows your gut, and disrupts your sense of peace. It seeks no less than total domination, if not of the conversation, then of the lightness and color in the spaces of your love. The balance dis ease demands, between overwhelming consciousness and total denial, would be difficult for the strongest and healthiest among us. The fact is that the real costs of dis ease management come in ways that are almost too difficult to measure, and yet remarkably easy to perceive. Such issues do not lend themselves well to policy debate.

As I see my own physical regression taking place, I am hyper-aware that Ev picks up more and more of the daily responsibilities—laundry, food preparation, cleaning, and of course, all this while she is working in her full time job. We haven’t even hit the point when I will need constant care, where every small item of daily grooming will require the support of someone else if it is to be done. The stress and demand that ALS makes on her far exceeds the emotional and physical resources that any normal person might hope to possess.

The toll that chronic dis ease management exacts is real, and it requires that we learn skills, tricks, and mindfulness in its management. For me, this past nine months has taught me that the first step is to pay ourselves. I have learned to conserve energy, to sit quietly and just be. Ev has recommitted to old normal, healthy habits–exercise, diet, sleep, yoga. We try to balance the conscious with denial. This allows us a fighting chance to win the wrestling match that holds despair at bay, and creates the space where we can still be best friends and lovers. Strength is only available through care, care for one’s self, and care for others. Even the healthiest among us needs respite. For the caregivers of the chronically dis eased, it is the post-trauma that means the most, and respite and care are exponentially required.

Perhaps the greatest realization for me in all of this is that nothing is singular. Dis ease casts a far greater influence than just one person. It walks through the door, sits down in your living room, and it asks, “What are you going to do about me?” If we respond, “I don’t care,” it is at our own peril.