December

We are smack in the middle of holiday purgatory, that time in December between Christmas and the New Year. Having grown up quasi- Christian, my interpretation of December falls between the constraints of Methodism and my accrued experiences of this darkest of months. There is something far more primal, essential, basic that seems to transcend the fantastical stories and minor miracles associated with December holidays, for in the northern hemisphere, at its most elemental, the month is about darkness and light. You can extrapolate beyond – death and birth, Alpha and Omega, ending and beginning, and having now lived with ALS for three years, I often do. But dis ease puts great distance between the religious connotations of December and the reality of its darkness, and ironically, the further I get from December’s religious overlays, the closer I feel to God.

In the silence, when darkness and light are allowed to speak for themselves, human interpretation is always inadequate.

Just in the past week, my Ev stated, “I think this is my second least favorite Christmas.” This was in response to her encounter with a flying Christmas ornament resulting in the breaking of her hand. It probably would be nothing more than a nuisance if we had another pair of hands in the house. But between us, we now have one good hand, and that hand is non-– dominant. And of course her declaration prompted me to consider what her least favorite Christmas might have been.

There is a lot from which to choose.

In my experience, I have no difficulty in recognizing December’s darkness. Even without an ALS diagnosis, in the 32 years that Ev and I have been together, December is as likely to be about darkness as it is about the anticipation of light. The darkness is almost a litany. Some years ago, we watched our sons struggle while at the same time adjusting ourselves to the loss of our family’s patriarch. I still carry the imprint of a Christmas night spent in tears – Ev’s mom mourning the loss of her husband, our son mourning a life that was and would be no more, our other son clearly confused and not yet ready to move in a new direction, Ev and I feeling totally helpless. There is nothing like the emotional fog that comes with that kind of experience. Another Christmas, we wondered if the joy of the birth of our second child would be offset by the diagnosis of leukemia in our first. Thankfully, this was not to be, but it left us tasting the fear that all parents feel for the health and well-being of their children, only exponentially intensified. During our first year in Cairo, one of my high school students died of a drug overdose, and his death was a vortex that dragged families into repatriation and our school into the self – recrimination that can only come with such a tragedy. December lasted months that year. And when I was 14, I experienced the unimaginable act of cradling the head of my dying friend as we walked home from basketball practice. A 40-year-old would not be equipped for such an event, but for a 14 year old it reverberated down the decades and still nips at my consciousness even today.

These are but a few of the high points of December’s darkness.

In the dark, it is colder, more isolated, alone and bounded. In the dark, we forget love and life and the truth of our humanity. In the dark, the false promise that light has fled the world overwhelms us and leaves us in a state so blinded that it is impossible to perceive any other choice than despair. In the dark, humans cast about in desperate search of any alternative, throwing in with false prophets and commercial ventures that leave us even more empty of the light we so desire.

Listen, in the northern hemisphere, December comes, and darkness reaches its apex.

ALS has taught me that even when the light of the world goes out, the light of your heart remains. It may be harder to discern it, to feel its presence, especially in the thick darkness of ending, but every ending spawns a new beginning. It is the endings where the dark is most easily perceived, overwhelming the tiny points of light present in the birth of something new. My brother in ALS, Stu knows this:

“If you are now expecting some surprising uplifting learning from these experiences I’m afraid I must disappoint you dear reader… The question is at what point does the effort and pain of trying to live with at least a modicum of dignity outweigh the value of the love and caring I am able to give and receive from family and friends close to me?”

The fact is that in the darkness it may seem that there exists nothing uplifting, yet the darkness lifts up – advent, a new chapter, a page turn, a death, a birth. In the end, the light that comes to the darkest of places is not a light that we find, but a light that we bring. Dis ease exponentially multiplies the difficulty for us to see the light within ourselves. My brother Stu is clearly at that point, and all I can say is that his light shines out of his own darkness onto my life. The question he asks is the question we all ask. It is not specific to ALS, rather it is the question of a life well-lived. It is a question of truth, raised in December’s darkness, reflective of the light with which he has illuminated all of us.

Listen, in the northern hemisphere, December comes, the earth wobbles and darkness ends. We begin the slow upward journey into the light of sunny days and late evenings and warmth and short sleeves. There will be cookouts and beer on the patio, the freshness of spring and the indelible smell of summer. Earth will wobble again, the fall will come, and light will end. The Alpha and Omega, stripped to its core is nothing more than the effort to engage darkness, yet find balance in the light of love and care.

And in the effort and the balance, the lightness and darkness, the ending and the beginning, faith emerges from purgatory, and Methodism and experience are not enough to capture its full meaning.

That Which Does Not Kill Me

As expatriates living in Egypt, we walked a fine line between the laughable and the ludicrous, sometimes within seconds of each other, and often in the same situation. With so many possible stories from which to choose, I hope you will indulge me in using the local beer – Stella (not to be confused with the Belgian Budweiser) – to illustrate. Stella came in oversized bottles, green or brown, that had to be held up to the light in order to see whether “floaters,” usually some unfortunate cockroach seeking an early sample of the brew, were present. And more often than not, the carbonation had seeped out from an improperly installed bottlecap. Drinking Stella was at the very least a question waiting to be answered, and sometimes it became a great adventure, more than anyone should have just for the sake of drinking beer.

 Local entrepreneurs played upon the quality control of Stella beer. They developed specific fashion lines for the expatriate communities so that two extremely popular T-shirts sold in our ghetto environment were Stella – inspired: “Stella Beer – 10,000 Cockroaches Can’t Be Wrong!” and my favorite, “That Which Does Not Kill Us Makes Us Strong – Stella Beer.” Who am I to argue with burgeoning capitalism?

From my dis ease and ALS vantage point, “That which does not kill us makes us strong” garners a much different meaning than my interpretation of 25 years ago. As I look back at my old normal, the saying might actually be one of the primary stanchions on which I built a major part of my life. “That which does not kill us…” smacks of running at the speed of light right up to the edge of personal disaster, just to see how long you might totter before going over. A false implication of immortality exists in the saying. For many of us, “that which does not kill us,” actually becomes “nothing will kill me, and I will always be strong.” It only takes the kind ministrations of dis ease to contradict the immortality and blur the meaning.

If you know dis ease, then you know a confluence of negative events can be deadly. It can happen very quickly as in a horrible accident where one poor decision cascades into fatality. Or it can happen in slow motion; a floppy foot, a couple of falls, a lump, a hematoma, a diagnosis. It isn’t the speed of the event itself, it’s the confluence, and at some point no matter who you are or what the circumstance, it becomes too much to bear, overwhelming your humanity into a new existence marked by your certain demise. But our human existence is also marked by denial. Since the time of my diagnosis, well-meaning people have shared that “God only gives you what you can handle.” I usually thank them when they say it, for I know they mean to offer me comfort. But such a statement is one that obfuscates our human condition. Something out there will kill us.

This past week, I Skyped with a friend with whom I had not spoken for years. Our conversation, framed in connection and catch up, found us trying to explain in the space of an hour some of the most meaningful events in the time since we last saw each other with all of the success one might have teaching nuclear physics to a three-year-old. Both of us struggled to overcome language and context and emotion and time, bravely seeking to re-create connection. Each of us had a story to tell about our kids, and that story contained real fear – palpable, tangible, sweat streaked and tear stained and just distant enough to allow us to relate the stories in straight tones, yet present enough to still invoke the powerful fight or flight that only a parent experiences. I think that one of us even said, “That which does not kill us…” in an attempt to rationalize tough times in the lives of our kids and the fear we both carried.

We are both old enough to know life’s great lesson – it will always give you more than you can handle.

It isn’t difficult to apply what we both know to my present situation. I have never had a teacher like ALS – so demanding, so exacting, so focused on the outcome. ALS schools me to remain psychologically upright even as she lays me flat. ALS requires me to strategize independence, even as she diminishes my body, forcing me into dependency I neither seek nor want. ALS reveals gradual and sudden loss – pure, heart wrenching, gut scalding. It might seem her real lesson is, “That which does not kill us, actually will,” but I keep learning that one must not end with the obvious answer. The depth of my teacher is far greater than being simply overwhelmed.

We are taught to believe that we have control over things that we do not, that we are personally responsible for such control while life belies the fact. Paradoxically, we know our control is miniscule, dwarfed in its comparison to God the universe and everything, so it might seem our only choice is existential angst. Deeper learning seeks reconciliation, so that through the requirements and diminishment and loss, ALS whispers to me to have faith; the lessons are deeper than the losses, each loss is a teachable moment, an opportunity to grow until growth is no longer possible, a roadmap to the ultimate outcome, a faith in more than the fact of loss. ALS quiets the noise revealing human music and God singing in great statements, credos of faith that we are here in the moment with no influence on the past, and a future always unclear. And if we choose we can go it alone, or we can embrace our big messy human condition together in the struggle to understand a world that of necessity must always be just beyond our comprehension. The noise abates, and what is left is a teacher’s purity.

Open your heart. Breathe in faith. Embrace your humanness. Glimpse God. Sing.

We will always be given more than we can handle. We will always have the choice as to how we respond – collectively, singly, the great choral hallelujah, the quiet solo aria. There is space for both so that in the end when we must go gently alone, the gift becomes apparent if you have eyes to see or ears to hear or skin to sense. That which makes us strong is what we can shoulder in concert, in tryst with each other, blessed by the communion of saints and sinners with lusty voices trying to go it together until we are released into the magnificent universe to rejoin that which we cannot understand with one, great, hymnal, solo aspiration – a final ah.

I think you could drink to that, although if it is a Stella beer, you might want to check for floaters.

An die Musik

As many of you know, I have been participating with Cathy Wurzer  on Minnesota Public Radio in discussions of trying to balance life and death with ALS. For some reason, I have never linked my blog to these stories. It was a real oversight, because there are things that can be said through the medium of radio that are very difficult to write (and vice versa). So I am going to rectify that oversight right now and embed a link to the 17 stories that Cathy has run since December 2011.  I believe that you would have to agree that for a media person to stick with a story as it progresses in such a sensitive and truthful way is quite rare. Cathy is that rare journalist who understands the need sometimes to set aside so-called objectivity and to really seek out the meaning in a story. It has been a privilege to work with her, and I want to share her work with you. Below is a link to most of the stories.

Bruce Kramer: Living with ALS – Minnesota Public Radio

Last month, Cathy introduced me to Alison Young, host of one of the classical programs on KSJN, the local MPR classical affiliate. She does a program called “Music with Minnesotans.” To make a long story short, Alison came out to interview me and asked me for a playlist. The link to that program is below. Once again, I am awed by the sensitivity and depth of her interview skills and the discussion that we had. It was wonderful to speak music with someone who had such a deep knowledge of the topic, yet understood how music allows me to stay and a healing place. You will discover the reason why if you listen to her program.

Music with Minnesotans: Bruce Kramer

I hope you enjoy the programs.

Cytokinetics Part 2

Thank you to everyone who responded either publicly or privately about my letter to Cytokinetics. I want to share with you the following correspondence, because I do believe that people who are working toward new drug therapies for ALS have the best intentions at heart. This letter is from Dr. Jeremy Shefner, the person to whom I sent the original letter describing my experience with tirasemtiv. He also forwarded my letter on to Cytokinetics so that higher ups in the company including the president were aware of its existence. Late yesterday, I received a letter from the Medical Director and Senior Vice President of the company. I will not reprint that letter here, for I have not received permission to do so, but his concern was very similar to Dr. Shefner’s. Below is his letter with my reply.

Dear Dr. Kramer:

Thank you for your extremely thoughtful letter.  I have passed it on to Cytokinetics, and I am sure you will hear from them as well.  As I do not make decisions regarding access to drug outside of the trial, I will defer to them on that issue.  However, I did want to respond with respect to some of your other points.  First, I do truly appreciate the effort that ALS patients expend on participation in clinical trials.  From conversations with people I care for,  I know that, while everyone hopes for personal benefit in any trial, the main motivations are much more altruistic, and involve hopes for better treatment in the future even if they personally may not be directly impacted. 

The commitment of ALS patients to improving future care helps me maintain my own enthusiasm and commitment toward an effort that, in the last 20 years, has seen more than a fair share of disappointment.

I was also very interested in your comments regarding your perceived areas of improvement on drug, and the question of whether the evaluations in the trial will capture these events.  I guess the only real answer is that we will see.  Improvements in sleep should be associated with changes in respiratory function, and neck control hopefully associated with changes in strength of other muscles that we are measuring.  However, your observations highlight a major problem in ALS trial design, which is that patients present with different constellations of disability, and uniform assessments are likely to miss some areas affected.  As you point out, the evaluations that occur in this study are already extensive and potentially fatiguing; its hard to imagine a trial where even more measures were employed.

The issue of open access to drug for patients who successfully complete a trial is complex.  One sobering fact is that, in the last 20 years, patients in placebo groups of ALS trials have fared better than those in the active treatment groups, primarily due to unanticipated adverse events from the experimental agent.  While the early small studies of Tirasemtiv are encouraging, they are by no means definitive, and prolonged open label treatment prior to the analysis of Benefit ALS carries risks as well as potential benefits.  This drug is different than others tested previously in that, if effective, Tirasemtiv is more likely to produce a symptomatic improvement than agents targeting disease progression.  However, I have talked with patients from many previous studies who are absolutely convinced that an agent which has been shown ineffective in general was working on them.

I am extremely enthusiastic about the potential of Tirasemtiv to improve function in patients with ALS, and committed to see the development process move as quickly as possible so that all ALS patients have access to the drug if it proves to be effective.

I know that Cytokinetics shares this commitment.

Best regards,

Jeremy Shefner

And here is my reply:

Dear Dr. Shefner,
Thank you for replying so quickly to my letter. I sent it to you, because you are the principal investigator  for the tirasemtiv  study, and I thought you might  find the observations from one of the participants in the study  to be of interest. I also sent it to you with the idea that any form of communication concerning the difficulties you so rightly point out in measuring response  in persons with ALS might advance the conversation toward more creative and robust methodologies while still controlling for multiple variables. The fact that you would write such a thoughtful and well considered response is indicative of your own care, and I truly appreciate it.

As you probably saw, I carbon copied a number of politicians and persons with some influence in the ALS research community. This was not done to put you or Cytokinetics on the hot seat, but to acknowledge the complexity of ALS drug trials. There are so many players and so many priorities that must be met in order for a drug to actually be brought to market that the possibility of more responsive testing can be difficult to comprehend. My own work as an educational leader  has showed me that until we put all of the facts and all of the feelings, at least as much as possible, onto the table, with all of the players present – government, industry, researchers, advocacy organizations, study participants – we really have only an incomplete picture of the complexity, and therefore less possibility of constructing more  responsive and creative methods to account for the complexity.

As you also can tell, I only know enough about research design to be a little dangerous. Most of my own research has been qualitative in nature, a methodology that is not understood in the hard sciences but might have much to offer in humanizing and accounting for the complexities presented by a disease such as ALS. I do not know how much time I have (most of us don’t), but I do know that helping the science to become more responsive, better able to account for the multiple presentations that my disease offers, is one of my final priorities. Thus, I would offer that if there is anything that you think I might do to advance such a dialogue, if there is anything that I might do that could help you in your role as an ALS researcher, please do not hesitate to ask. It would be a privilege.

Finally, I have a request. As you may or may not recognize, I have been blogging my experiences with ALS for over a year and a half. My blog, the Dis Ease Diary is not followed by thousands, but it does reach out to several hundreds. As you may have guessed, my blog entry for this week was my letter to you. Your kind and considered response would be most welcome on the blog, and I would ask if you might grant permission for me to share it along with this email back to you. As you can imagine, the responses have ranged from sadness to realism to a sense of wanting to do something. My greatest hesitation in writing my letter in the first place was that some would see it as demonizing the research and the methods. Nothing could be further from the truth.

Dr. Shefner, your response was most welcome, and I do have great hopes for this particular trial. Thank you for taking away a little bit of the isolation of ALS. I wish you only the best.

Sincerely,
Bruce H. Kramer, PhD and person with ALS

I am waiting to see what happens next, but at least a dialogue is now opened. I don’t believe that this is all about profit, nor do I believe that we have arrived at the best system.  But I do know that it is the system that we have, and to change it fully would be like turning the Empire State building in the middle of the ocean, if you will pardon the mixed metaphor.

Thank you again for your support and loving expressions. It’s been a remarkable two days.

Looking Good

Even in this time of social media, in this time of Facebook and Twitter, in this time when people will post the most personal of information, even in a time when people blog about their own terminal dis eased journeys, most of us still need to keep private spaces and public faces. It only makes sense to withhold some vulnerabilities behind a public face, masking the turmoil beneath the façade, holding back, demonstrating the wisdom of personal protection and smart boundaries. After all, if we did not maintain a sense of face, then answering the question, “What is wrong?” would colonize our waking hours, even in this most socialized of media times.

My old normal self, when professional considerations dictated the logic of private spaces and public faces, invested enormous energy into the look, the feel, the armored uniform of façade. Now, it would take so much more energy than is mine, just to construct the mask, let alone maintain it for any length of time. The old normal is just not available to me. And yet I still find myself attempting a public face that hides what is going on underneath the surface, in spite of the energy required.

Old habits die hard.

My private-space, public-face condition is especially called out when I meet people I haven’t seen for a while. As they greet me, they invariably will make the observation, “You look good!” Focusing on some superficiality, an article of clothing or my glasses or the color in my face or the smile that belies the dis ease, they are seemingly and genuinely surprised, leading me to think that they believe ALS should ravage its corporeal host in a more horrifyingly obvious way (I cannot imagine). For those that I see on a regular basis, who note the subtle changes as they happen, such interchange is rare, but for those who have not seen me for a while, who perhaps are following my journey through these writings or through news from family or friends, the likelihood is to privately note the losses and publicly proclaim the “good look,” even though the loss is obvious. It is only too human to hiccup some nicety about looking good.

I really can’t blame them. I would do the same, and I have.

I suppose if I was pale and sallow, if I had lost copious amounts of weight or gained full on bloating due to chemo or radiation treatments, if my hair was falling out, if my skin stretched skeletally across my bones, then the ravages of dis ease would be more apparent. But ALS isn’t like that. It moves insidiously and for me, just slowly enough that I can “look good” for a little while, although a little while seems like all I’ve got.

I’m not sure how to respond to “You look good!” Usually, I thank the person and try to think of a way to move the conversation away from my appearance. It is as if they perceive the energy I can no longer muster, a cipher of my former days, a tome to appearance even though God knows I’m already self-conscious enough. Over the past two years I have lost most of my arm and leg muscles, a lot of my back muscles, my abdominal muscles. I am reborn in outward appearance – big belly, skinny arms, skinny legs, weak neck and heavy head atop the whole package. Or perhaps a different way to characterize this new appearance would be that my belly is Buddha-like, although I cannot claim the same inner peace for my life outlook.

I have ALS.

There are variations on the public call out of face. We humans cannot help ourselves. We probe with questions like, “How’s it going,” or “How ya doin’?” not expecting any answer of substance. But for me, such inquiries are fraught with danger. I parry and dodge, usually with good nature and glib honesty, “Oh, I have ALS. But other than that I’m doing great.” There is truth in that answer, but it isn’t comfortable. Neither the question nor the answer lend themselves to the easy repartee that a couple of able-bodied human beings with no terminal illness on their conscious horizon, laughing and joking with one another, would enjoy. The longer I wait to answer, the more uncomfortable the space becomes. Most of us don’t reply to “How’s it going” with complete truth. But the honesty in the answer I have constructed, as glib as it might be, is about the best I can do, and I have to admit that at this point honesty means much more to me than emotional comfort.

I suppose you could accept a biblical interpretation: “Ask and ye shall receive.”

Inherent in questions of state of being are questions of identity. Matt Sanford writes, “What is identity in the face of a radical disruption? Who was I? Who am I? Who will I be? Truthful answers to these questions often take years and years to realize.” There is no question that ALS is the “radical disruption” in my life, and I am often brought up short with the consideration of the real question at hand. “What makes life so sweetly worth the living, something worth the good look, when death in all its ALS forms sits so clearly on your shoulder?” The implication is clear–any outward manifestation of life is inappropriate in the face of terminal dis ease. And in spite of myself I have to admit that it is a fair question. My life has become a search for anything and everything that might balance the knockout punch of ALS. It’s “radical disruption” must be radically disrupted so that a good day is defined as one where the necessity and presence of ALS are balanced by the light of family and friends and music and love.

“You look good!” “How’s it going?” “How ya doin’?”

The human condition is a delicate dance where good and bad, joy and sorrow, sickness and health, dis ease and comfort are neither mutually exclusive nor fully integrated. We are everything and all things, and we are nothing. To say that ALS has taught me to dance might seem disingenuous to some, even ironic in its bold statement of fact. After all, I no longer walk, how can I dance? But the dance dis ease bestows is one that all humans must experience in order for life to be fully grasped in its overall messiness and complexity, its delicious chaos. It is the gift of humanness and free will. It is the gift that takes the focus off of avoiding death, and instead presents a choice – either wither away in the horror or seize the gifts that life and dis ease bestow. It is a balance between the heavily tolling march of dis ease and the balletic leap of living joy.

I don’t look good. My muscles atrophy and my strength wanes. Yet each day my heart is is full through friendship and love and warmth, radically disrupting the radical disruptions of the good looks of ALS. Looking good isn’t about the face or space.

It is the disruptive blessing beyond the look.

Elegy

When Ev and I were 26 we moved beyond United States boundaries to Norway. We had with us our 14-month-old son David (Jon would be born three years later in that oh so special country), a thirst for new adventures and the fire in our bellies to become great educators, the teachers we wanted to be. And within a week, we had met so many others like ourselves, green and young and excited, as well as a few people old enough to be our parents, but still excited nonetheless.  And we knew we had made the right decision. Within two weeks, we began to recognize the wisdom and life experience in some of those our parents’ age, and we realized that all the young teacher energy, all of the young teacher synergy, could not hold a candle to the force that was one of those couples, John and Ruth.

I’m not sure what it was exactly, but I think our respective families would say that we fell into each others’ lives at just the right time. Always respectful, always mindful and full of enthusiasm, John and Ruth became to us the parents and grandparents we ached for so far away, and likewise we became the children and grandchildren close by, when their own children were equally distant as our families. If that were the end of it, it would have been a beautiful narrative, a time together defined by circumstance and geography and travel and adventure. But there was something else between us, something that allowed us to turn each other free from living in a place we all had come to love, to living in new places that we knew we could share in some endeavor greater than what we had known before.

You see, in our story, we were meant to find John and Ruth, to interweave our lives with theirs off and on but always keeping track.   Each of them brought something special to any situation shared. John loved a good story, good food and good company. Ruth brought an eye for the beautiful, an ear for that which was the most lovely in human interaction, and most of all a sensibility that every moment would be a special moment if we just paid attention. I could speak of each of them for hours, but at this time I need to focus on Ruth, beautiful and sensitive and grounded Ruth.

There are so many things that I could say about Ruth. I know that for every story I would tell, sons and daughters and friends and neighbors and acquaintances and first timers would nod knowingly, eyes lighting with the joy of being in her presence, inspired to share other stories a hundred and a hundred times over. I will share two, knowing that there are thousands.

When we lived in Egypt, John and Ruth  visited us at our home. I have never seen any one person wring so much out of one week in one place as Ruth in Cairo. One of our friends had concocted a 24 hour Sinai tour that he would give for the not so faint of heart, and he and Ev decided to take John and Ruth out on this grueling, no sleep circuit. It began at St. Catherine’s monastery at the base of Mount Sinai. One would awaken to be on the paths by 2:30 AM so that the sunrise could be experienced from the top of the mountain. On their way back down, Ruth was stopped by a man from Japan who asked her politely her age. When she told him she was 66, he just shook his head as if to say, “how could I ever possibly keep up with someone so fit?” What he didn’t know was that two hours later Ruth and John would be snorkeling in the Red Sea and then taking time out in the desert looking at rock formations. And as we all know, Ruth’s hiking only got better with age.

A second story is a little more personal. When Ev and I were in our third year in Norway, Ev miscarried. We were devastated. In came the community led by Ruth, not so much to make it right or to offer any kind of silly observations like, “God must’ve really wanted that baby,” but instead just to offer company and attention and a meal and assurance that while we were disappointed and sad, it would get better.  I know there are much more special stories about Ruth – stories of invitations into homes of people she had just met, stories of friendships maintained over years and years and years in Libya, stories of parties and gatherings that were so right that one could only marvel at the woman who had thought through the remarkable detail of these social occasions, and most of all, stories of a woman in love with the Middle East. But the Ruth I know is the Ruth who understands the joy of being, that sometimes being is all we’ve got, and that is a powerful story.

I suppose that there is nothing I could relate that would add to this beautiful story of Ruth except that she taught me how to keep a sense of wonder, to be brave in times where self-consciousness ruled, to value the beauty in the individual human no matter who he or she was. Ruth encouraged me to be grounded, feet firmly planted in my history both good and bad. Ruth cheered me to soar with wings opened to the sun and wind and rain of life’s wellspring. Ruth could laugh in a way that lifted my heart, and two sentences later cry tears tinged with the joy of  life fully lived. And she freely gave the knowledge of just how one does that — so that I learned to laugh in a way that lifted my own heart and to cry tears that told me that life lived in wonder and awe was my privilege.

After I was diagnosed with ALS, John and Ruth were two of the first people we called. I loved how matter of fact they were, how easy they were to talk with, how they focused on a healing future, how they wrapped their prayers around Ev and me. After our first visit at Mayo in which my diagnosis was confirmed, we scooted over to La Crosse to see them. And there was Ruth with a special meal, a place of warmth, healing for the unhealable, with laughter in the face of fear, and with tears that soothed confusion in reassurance that love is greater than all things.

And this is the most important thing that Ruth’s life teaches me. She was and is and always will be the greatest reassurance, that love stands when all else falls, that love is present when presence is remote, that love is the best way, the only way to reach out beyond the confusion of what it means to be human, that love is the holiness humans are granted in proof of God.

When Ev and I were 26, and we moved to Norway in search of the great adventure, we never believed that the great adventure would be eternal love shared, but that was our discovery.  And for us Ruth will always be that eternal love.