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

Endgames

Perhaps you have noticed that I haven’t blogged for nearly 4 weeks. There are reasons for this. My physical ability to write is more and more compromised by my lack of strength to pull up to the computer and my lack of stamina to stick with the writing once I am there. Of more significance is the fact that I have chosen not to put up two separate blog entries. It isn’t that I am afraid to share how I am feeling, especially when my feelings have to do with grief and loss. It isn’t that I am in such a bad space, that I’m afraid no one will like me anymore. It has more to do with the constant existential awakening that comes with dis ease, with this seemingly infinite process of winding down, yet moving at the speed of ALS. In the past two weeks, I have allowed myself for what seems like the very first time, the question, “Is this the beginning of the endgame?” What a question to ask, as if the moment of birth is not the beginning. But we aren’t conscious at the moment of birth like we are in the bloom of our adulthood, so the question takes on meaning even if it borders on the rhetorical.

My French muse Francis Cabrel sings the angst, “J’avais des rêves pourtant.”

Raising the question of the endgame is significant for me. Before, it felt like an academic exercise, one that fulfilled my need to stay ahead of symptoms and losses in a way that gave me the illusion of control. But as I look back on my control rituals, it is clear that they lead to this point: The endgame is coming, I don’t know when, but I can have faith in its presence now in my life, a new phenomenon for which to prepare. And in preparation it is useful to stop, to take stock, to recite the poetry of grocery lists and ledger sheets that account for gains and losses, mumbled psalms of what is in my capacity and what is not, utilitarian self-pity, borderline whingeing, yet keeping ahead as best I can, even though I know I am seriously falling behind.

The loss is easier to share than the litany.

I cannot help but feel robbed, not of immortality, but of the 30 years of healthy old age that I honestly thought was my future. ALS provides the perfect corrective to the best of plans. She grants knowledge that our imperfect physical envelopes in which we place so much importance, given to us for such a short time, always fulfill their design destiny and break down utterly and completely. There are so many ways to shorten our lives, and when you consider how many ways you could go, how easy it is to experience catastrophe, how unremarkable is death, then dying before one’s so-called time should probably be seen as more the norm than the exception. The 30 or so years that I like to believe would have been mine were it not for ALS are so minuscule in the scheme of the universe, that it is tempting to diminish their importance, to believe they are meaningless.

But they are my 30 years, and I had dreams and plans.

I planned to sleep in the arms of my one true love, to be awake, so very awake to her presence in my life. I planned to be there for my boys and their true loves and the children that they would have. I planned to cook birthdays and anniversaries, Thanksgiving and Christmas, three-day weekends and one night chili cookoff’s, holidays and holy days. I planned to be the husband and father and grandfather of legend. I planned to bring a rational voice and compassionate love to the education of children, the emotional healing of people, the design of systems. I planned to be the best friend anyone could ever have. Before ALS, I could see those plans opening into limitless vistas.

I am cured of planning, at least for the moment. Now, I pay attention to the losing – hand dexterity, back strength, neck strength, vocal presence – all of these to go along with the legs and arms and torso already gone. And with the losses, I have struggled to play catch-up and turn to new ways and old ways that I now realize are just barely ahead as the losses pile up behind. And yet, I am not cured. I still have plans – final words, time spent, memories, music.

I plan to end in a better space, always a better space.

If there is anything that I have learned from ALS, it is that the bad times are like changeable weather. If you have patience, things will begin to turn around. There is no big event, no one thing that turns me away from feeling sorry for myself toward that person I want to be. In spite of my whingeing, I work hard for spaces devoid of soul-killing feelings – deep resentment, crushing bitterness, prolonged anger. It isn’t that I don’t own major reserves of these feelings, but grim feelings have no payoff, they depress colors, muffle sounds, numb the touch and leave me hopeless in dis ease. So I do my best to acknowledge them, communicate them, concentrating on things that bring me back into the here and now space where the beauty of living is so much clearer, even if it feels shortened by circumstance.

Listen! Grimness is legitimate. Despair is normal. Helplessly hoping is most human. But I can handle it, we can handle it, it only overwhelms my body. My soul still sings. My spirit breathes.

So many people offer time and companionship, keeping me from loneliness, caring for such small yet important items as straightening my fingers and helping me adjust in my chair, providing thoughtful company, bringing bread. The times I can get out to church, to yoga, even to a wheelchair tuneup are a blessing, for the people whom I love touch me with their strength, and I feel better in spite of how fatiguing the logistics can be. The unconditional love of Ev and sons and daughters–in–love, of friends and colleagues, strengthens me for the eventual time to come when I know that ALS will overwhelm me, and the decisions we make together will be like pouring joy’s waters through the clarifying filters of sadness.

And of course, there is Hypatia – pure granddaughter.

In a funny way, the endgame opens a panoramic view. Quiet and starlit, soft and peaceful, waves and wonder, I just need to breathe into it, to open myself to its beauty, to not worry about the plans or the timing. I understand now that the plans I made were not so much about me but about everyone else whom I love. The love will find its own way if I will allow it the space. And I will be able to move through this no matter how hard it gets, if I will just stay open to the epiphanies and revelations on the horizon and right before me. “J’avais des rêves pourtant.”

And the endgame is just one end, opening new beginnings.

Summer Whispers

I took a vacation – really, a staycation – spending the vast majority of my two weeks off at home. This was a very different experience for me, for even with last summer’s realization that ALS had the upper hand, I still tried to get us out of town and far away so work could not intrude (or at least I was too far away to do anything about its intrusions). Such hasn’t been the case this summer. At home, each morning I rolled into our den, opened up the computer and dared my work to get into the face of my time off. Admittedly, this lack of boundary was a subconscious recognition that ending my time as a working adult is now plainly in sight. Maybe secretly it was the desire to continue the engagement, even when I was supposed to be off. On the other hand, the new logistics of travel (mostly associated with bladder capacity and the need for a Hoyer lift), also dictated the appropriateness of a staycation this year. So this summer’s vacation has not been one of travel’s explorations, but discoveries of inner thoughts and feelings and realizations and hopes.

The algebraic formula for Summer 2012 clearly graphs as hills and valleys. One week, ALS is nothing more than just another life adventure. The next it is a cascading series of physical failures. Joy and sadness are constant companions on this roller coaster, heightening the experience of peaks and troughs. There are days where I look at my condition and think, “I’ve got to get on top of this. I need to do more to stay ahead.” There are other days where such thinking seems absolutely futile, a waste of energy, frittering away time on details wrongly focused. Like so many who play out the normal process of aging, I have realized what is to come. Like the few who have ALS, my epiphanies take on the urgency of too rapid physical loss–Bruce with ALS Version 3.0.

Apparently, all things must pass.

Whispers of the future of the work that I love–the future of my college, in context of the future of my University, in a time when the future of higher education in America is a mystery–loom large. It is a compelling call, one that I wish I could engage into the next iteration, and it is no small thing to admit that the needs of participation in the upcoming dialogue lie beyond my capability, my capacity, my energy. Like so many institutions, we are caught between the desire for excellence and the need for efficiency, making us a target like any other consumerist entity–eyed by robber barons, ripe for takeover to be chopped up for yield, ideal for new narratives about the virtues of competition by lean for-profit companies who build easy myths that they can do anything better, education as commodity, markets über alles. Effectiveness and efficiency are not mutually exclusive, but they have become diluted by bottom lines – profits are the final arbiter, conservative and liberal do not share common bonds, unlimited growth can be achieved, there will never be a clear definition of what is enough for the well lived life. Higher education carries with it a specific responsibility less and less clear in the minds of Americans, its role as the great equalizer now seriously questioned – sometimes for very good reasons and other times for reasons spurious at best.

Somewhere in the conversations we have deliberately or inadvertently forgotten how seductive ease is to human desire. Somehow the work of the mind has become divorced from the work of the hands. Somehow the idea that ideas are not practical and practicality is the greatest measurement of value has wormed its way into our collective psyche. It is our national version of dis ease, the artificial exclusion of intellectual from artisanal, thinking from doing, performance from preparation, theory from practice—these deliberate dichotomies valued by the pundits and politicos so that their efforts to make these concepts understood below a fifth grade level can divide us, human from human, so they can scavenge the flotsam and jetsam of our confusion, while we remain disheartened, dis eased in our own space. Every good athlete and musician knows the intersection between mental preparation and physical performance. Every good teacher knows you must not make things too easy. Ease is best for propaganda, not education, and once people expect ease, they become less discerning, less creative, less human. It is a question of balance, and the balance right now is not fair.

ALS tears down all old frameworks, dis ease insists upon adaptation. Summer reflection is more than the context of work. Family whispers.

They are my true loves, and my placement in their midst as self-appointed paterfamilias no longer feels easy. Distinct markers redefining the evolving me are clearer. There was a time when I defined myself as the safety net for my sons, my partner Ev. That is no longer possible for I have neither the resources nor the energy for such backup. Our knowledge of each other shifts, crawling into our superficial awareness or hanging back just out of reach of conscious discernment. But we know.

A man who cannot dress himself is a care-receiver, not a caregiver. A man who each day must check the proverbial gas tank, mentally running through lists of new or potential physical loss– increasing reliance on others for the most basic needs, seeking safe havens that do not test corporeal or psychological energy—must leave behind old assumptions based in past ability. All of this is more and more obvious, barely spoken, gaining the traction of consciousness. And what remains is still me –love and history, good and bad, humor and sadness, musician and athlete, intellect and artisan, foolish novice and wise veteran– none of this is lost. It remains a powerful binding force holding me, us together. We persist but for how long? Will I see the paths my children have chosen, flowering into the human beings I only imagined at their births? Will I see their children, carrying on in a world more globally robust yet less locally connected? Will I see my 57th or 58th or 60th birthdays? Will all of this so totally break us that we end up grim and greyed by the experience? Will we continue to meet the losses with new capacity for grace?

Summer vacation is a treacherous time, especially when time lies heavy on your hands.

In Minnesota, August brings regret and anticipation. We look back on the heat of the summer with our big summer plans and sultry anticipation of the good times to come, and we regret that we did not fulfill what seemed so possible in June. But we also look forward to autumn nights, chilly and crisp and cold, knowing that there still may be one or two 90 degree days left, enough to grab another inch of summer to warm the heart during the gray-blue cold ahead, appreciative of the stark insights winter begets. Reflection and discernment are not exclusive to summer vacation; they just focus into warm streams of consciousness at that time. There will be more realization to come, for dis ease insists upon it.

And I want to be there, if only it will have me.

Catching Up

I didn’t write last week. I was just wrung out. The kids got married two weeks ago, we held a nice reception for them with the family and friends that had come to the wedding—something that we need to take our friend Kathy out for champagne-brunch for the enormous help and support she gave (I don’t think any of us realized what she was in for). Jon’s new mother-in-law Teri made it through the ceremony and held court at the reception. After going home, she broke her pelvis—her bones were just riddled with cancer—and by Sunday, we were keeping vigil for this sweet, lovely woman. Teri died Tuesday morning, her wake was Thursday, and her funeral was Friday. By the time we got home from the funeral, I think both Ev and I were just ready to sit, to be, and to contemplate the strange juxtapositions of life. Our kids were remarkable through this whole time.

There are so few words that even come close to describing the ups and downs we experienced in the week after the wedding. I was so emotionally and physically exhausted that I spent most of day after the funeral just sitting, trying to regain some sense of the center that keeps me in place. And don’t get me wrong, I am not complaining. The week was holy in every sense of the word, one that breathed the indomitable spirit and energy of love’s highest heights and lowest depths into every waking and sleeping minute. It was the circle of life coming around on itself. Our beloved children married in an intimate, loving service. Our beloved mother Teri was lifted into the great eternity. We laughed, and celebrated, cried and mourned. The sun rose, and it set. Life as we knew it changed forever, and life remained achingly the same. It was overwhelmingly, beautifully, primal. I cried a lot, and I laughed as well. Of all the gifts of the week that we experienced, the most beautiful was to experience how these two families are now a part of each other, and I am really thankful for that.

This past week has also been full. We were at Mayo on Monday and Tuesday, an event that is always a little stressful. I find that I both look forward to and dread these quarterly checkups. I look forward to them for the opportunity to gain back some of the ground I’ve lost to dis ease’s inimitable progression. The ALS staff at Mayo is outstanding, extremely knowledgeable about ALS, at least in terms of what to expect, so they are good at predicting my upcoming physical needs. I appreciate their thoroughness and their collective wisdom as they reconstruct my life back into something that I can actually handle. I love how competent and professional they are with the very little that they get to work with. After all, there is no fix for what ails me, so everything we do in clinic is palliative. That has to be frustrating for someone who is trained to heal the sickness.

I also dread these checkups for old normal reasons. Whether they are meant to or not, these visits become dreaded markers on the road of the physical breakdown that I travel. They are like progressing through life at breakneck speed, only backwards. Getting dressed, and all the stuff one does in the bathroom is getting harder and harder, and it makes me wonder if we aren’t doing this part wrong in some way. I remember a comedian’s (was it George Carlin?) sketch in which he argued that we should do aging backwards. He made the case that life would be so much better if we began as infirm adults, progressed into middle age, gaining the same wisdom of age as if we were aging forward, but with bodies that continue to work better and better, until we retire at adolescence to look forward to childhood, infancy, and finally ending our existence as a “gleam in your daddy’s eye.” I have to admit, I like the suggestion. As I age more quickly than my 55 years, I note the physical loss, and the visits to Mayo only underscore this. There is a scale that they use to measure your function, and I continue to lose points on it. I hate losing, and I hate having my losses documented, because it means I am headed further down the path that I have tried so diligently to avoid this past year. On the other hand, it isn’t like I am not aware of the breakdown.

When you have ALS, one of the things they measure at the clinics is your breathing. Assessed through two basic measurements, breathing is one of those things that ALS caregivers try to keep on top of in marking the progress of the dis ease. They look at forced vital capacity, that is, how many liters of air you can exhale. They also like to get a sense of your blood oxygen level. And of course, one of the most significant decisions looming over a person with ALS is whether or not one will go on a ventilator (PALS just use the term “vent”) when breathing capacity is so diminished that proper oxygen levels are not maintained. Sorry for the clinical explanation, but I wanted you to understand the context that I carry in my head concerning breathing. And this context intensifies for me as a singer, in that my old normal image of breath was that it was something that could be controlled. Now it is something that marks breakdown. At this point, I breathe with the best of them, but the changes, however subtle, are very noticeable for me.

In my faith tradition, breath is a manifestation of holy spirit. In the past two weeks, we have held our breath in wonder as my son and new daughter-in-law married in a gorgeously intimate service. We have breathed in rhythm with the dying breath of an angelic presence taken from us too soon. I have breathed on my own with care toward the production of the best singing tone I could muster, and we have breathed in the presence of angels and spirits as they gathered in sorrowful joy wherever we were.

So it has been a very full, holy, and remarkable two weeks, and today was the last of it. Somehow or another, I found myself speaking to our church about our capital campaign on the same Sunday that our beloved choir sang Pergolesi’s Magnificat. I love that piece, and it was a privilege to speak on both our capital needs, and to help our congregation get the beauty of the magnificat text. It was a great service. Our choir, soloists, strings, and conductor presented this little gem of a work as a wonderful capstone for a lovely worship time. This place is very important to me, for it is a community that rallies around its own. Today was especially poignant, as we also remembered a beloved member who died on Friday. I am following too many people on Caring Bridge.

I have taken two naps today, and I’m ready for bed. I’m sorry that I don’t feel particularly profound, not even a little, but I wanted you to know that for our family, the last two weeks have been so human, so blessed, so sad, and so joyful. Life has taken many turns neither expected nor unexpected, and I know it will continue to do so. I still see deep meaning in the experience of dis ease, and I know that will be apparent with a little rest. But I think it is important to sometimes just reflect on what has happened, and take stock of all of the people that you love. It is in the catch up, that sometimes we can get ahead.