Eulogy

Paul and I were brothers. Though we did not know each other for very long, we were brothers. We shared common interests, a love of family, adoration of our wives, easy love of children and grandchildren. And we shared a special knowledge, one so intimate and beautiful and terrible that we rarely spoke its name, for we shared ALS. Paul and I were brothers.

Initially, I met Paul through my blog, having just written my disappointment in the failure of an 18 month drug trial in which I had participated. Given the whiny tone of this particular blog entry, Paul made the decision to introduce himself to me in this most inimitable way – a little bit about him, a little bit about life, and a big hang in there. He wrote:

“I want you to know that you’re not alone. After a year and a half of pursuing cardiology and pulmonology we finally got to the right Department–Neurology. So I was diagnosed in May of this year, but in fact I am starting my third year since onset of symptoms.” … He went on to share my disappointment in the drug trial, adding his own comment on a stem cell trial that he thought was probably not on the up and up. And he ended with, ” I’ll come back at you again but what you wrote that I just read this morning compelled me to reach out now, taking a risk of sounding trite. I’ll just say Hang in there for now.”

So Paul reached out to me, partly in introduction, partly to comfort, but mostly because he knew we were brothers.

My first meeting face-to-face with Paul was at a place that many of you might find surprising. Paul and I were yoga buddies. We would meet at an adaptive yoga course, Paul driven by Dee, and me driven by a friend. We would do our best to fulfill the different adaptations of the yoga asanas, and the nature of the class always meant that our arms were out and our feet were up as we tried to live up to the desires of our teachers, who I guess I should add were female. One Friday, I received an email from Paul telling me that he could not come to yoga that day. “Tell those skinny ladies that I’ll be back next week,” he wrote, and I did, exactly as he wrote it, and they were delighted. More importantly, after yoga Paul and I would drive up to each other in our chairs, grasp hands and talk quietly. We talked about how life was going, we talked about grandchildren, we talked about our wives, and most of all just out of earshot, we talked about living and dying with ALS.

The first time I visited Paul at his home, I went with a caregiver, Natalia that we both had shared. She tried to prepare me for the experience, telling me that I would probably have to be a very good listener. I reassured her that I thought I could be as such. But to be honest with you, I never have heard a man who could segue from story to story to story without taking a breath, and this was in spite of the fact that he was struggling with his breathing. Paul, on his own turf, was one at which to marvel, to shake my head, and to laugh and to cry.

To me, Paul was larger-than-life.  Overcoming numerous life challenges including surviving a major heart attack, Paul once told me that his heart attack changed his outlook on dying. He told me that ALS could not scare him, because he had seen what was to come. He said, “All of this stuff,” and he waved his hand, “is not that important. It’s much more important to love your friends.” And when we left each other that day I told him, “I love you man.” And Paul replied, “I love you brother.” After that, whether it was a phone conversation or a visit or yoga, we made sure we told each other we loved each other whenever we said goodbye. ALS taught us that life is too short to not say the things that are true.

I was asked if perhaps I might talk a little bit about what it was like for Paul to battle ALS. I have struggled with that part of this eulogy, not because Paul wasn’t valiant or brave or strong. I’ve struggled because when you do battle, it is too easy for the enemy to define you. Paul refused to be defined by ALS. He battled its symptoms, he rebelled against what was good for him; I cannot tell you how many conversations Paul and I had about adventures in the bathroom. But ALS could not define him. Instead, he told stories – stories of his childhood, stories of great challenge, stories of his work life, stories of his family, stories of goodness and love, always with a bit of wit and a bit more a moral. If anything, Paul defined not so much the battle, but how to make peace with a life in ALS.

Six days ago on Sunday afternoon, my son and daughter-in-law drove me to Waconia to see Paul. I knew it would be the last time I would see him, I knew. When we arrived, Molly met us and through tears told us that Paul had rallied. We went into the room and there was Paul – surrounded by a pink neck pillow, a monkey backpack, and all manner of family – Dee ever present, sons and of course, Molly. They graciously allowed me to roll up next to him, and he grasped my arm as if he would never let go – I can still feel it today. Paul introduced me to his family saying, “This is my friend Bruce. He is a good listener. And I tell him stories.”

Paul was in that holy space between life and death, lucid for one minute as he spoke of his needs at hand – a bit of water, an adjustment of the pillow – and seemingly beyond all of us in the next as he commented on how beautiful was the view. One of the last things he said was, “You can see the view from Highway 7.”

In hindsight, I now realize that of all of us in the room that day, Paul was the most aware and lucid.  You see, about a month ago Paul and Dee visited my wife and me at our home overlooking Highway 7. Far from moving in and out of lucidity, Paul offered the same gift as when he initially reached out to me. He reassured us beyond our own ability to perceive, that there would be beauty. And for me specifically, a brother in ALS, he offered comfort, prescience, a glimpse of the beyond, that it would be beautiful, and I would see it.

As I said, we were brothers; we shared a lot. When I left, I told him that I wouldn’t say goodbye because I knew we would meet again. In my future, and probably in all of yours, are many more stories from my friend, my brother – Paul.

I love you man.

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Picture Perfect

Almost to the day that I turned 50, I experienced a phenomenon that many of my older and wiser friends easily recognized. I would get up in the morning, look in the mirror and wonder, “Who is that old man staring back at me?” Or I would be walking by a bank of windows or some other reflective surface, and I would catch a glimpse of myself and not recognize the person looking back, as me. As I have continued to age, this experience has only continued to heighten. You might interpret my nonrecognition as narcissistic, and I guess I wouldn’t blame you if you did. Yet, I believe something instructive exists in whether or not we fully recognize our physical selves. I had this experience recently when I downloaded pictures from a small trip we made to Chicago. There was one picture in particular that, when it came up on the computer, made me stop and wonder if that was really me.

We spent our first day at Millennium Park. Chicago has a well-developed park system along the lake, but when Millennium Park was built, it was highly controversial due to its cost and location – a park on some of the most valuable land in downtown Chicago. Now, nearly 10 years after its opening, it is a place of energy and fun and wonderful amenities enjoyed by thousands of people every day, even in the winter. We spent almost 2 hours listening to the Grant Park Orchestra rehearsing an upcoming performance of the Shostakovich Fifth Symphony, we enjoyed bizarre sculptures, and no visit is complete without hanging around the great fountain that projects pictures of faces between its two monoliths, children and adults splashing in its puddles and standing under its bubbling waters. The whole park is meant to be interactive.

The day, lovely and sunny and cool for July, invited us to linger in the park, enjoying its beauty, recording the occasion with lots of pictures. Toward the entrance of the park, we stopped for the picture below – Evelyn bending down to be at my height, me in the wheelchair, crooked, Buddha -bellied, hands tired from steering. I describe this in such terms because for the first time in a long time, I was surprised at my lack of recognition that it was me in the picture. Something about the picture projected what I think of as ALS posture – a picture that my subconscious has always seen in others, but not in me. It broke through my denial spilling waves of cognitive dissonance between the body I have, the person I am, and the way I see myself. Suddenly I saw myself with other’s eyes, and all of those old feelings about disability and deniability came rushing back as if I realized my disabled condition for the first time all over again.

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I guess I really am a TAB at heart. I just can’t help it.

It was the circling gyre all over again – a point on the path of dis ease that I thought I had put behind me – only to spiral around to a deeper (or perhaps more superficial) interpretation of that same event. I thought that I had reached some semblance of acceptance, where this physical body is what it is, and where my own self worth is not a byproduct of physical capacity’s superficial interpretation. You can imagine how surprised I was, not just by the picture, but by this over-the-top reaction of shock and denial.

Usually I have my head around these things, and I am able to live within my disability with a pretty healthy attitude, but seeing that picture put me right back into the denial I had experienced when my ALS first began. And associated with such denial is an unhealthy self-esteem tied up in physical projection. I questioned whether I deserved the love and attention of my family and my friends because, after all I was not whole, I was not well, I was ALS personified – scoliosis, gut protruding, wheelchair – bound, muscles deteriorating. Not a pretty sight.

All of this from one picture? Eventually, I was able to find stasis, harmony – a place where I could accept that it is just my body, and the space that I occupy is far greater than the capability and capacity this body projects.

That harmony was brought home to me this past weekend with the birth of our first granddaughter. To say that I am over the top ecstatic, in love, sappy, dewy – eyed, wowed, totally into this tiny human being would be an understatement, and I am blown away by these feelings. Hypatia, all 72 hours of her, is the mirror in which I suddenly see the real projection.

She is, in my mind, perfection.

Before her daddy came into our lives, I wondered if I would have the emotional space for a son or daughter. Would I have enough love for his mother and him? He answered that question the minute he was born, and I realized that love’s space had expanded and there was more love to go around than I knew what to do with. When her uncle was born, I suddenly realized that this loving space exponentially multiplies so that no matter how many occupy its realm, there is always more love to give. When my sons introduced me to the women that are now their wives, that space opened up again, projecting out and underscoring what I had come to learn about love in space even to this day.

And now, this tiny three-day-old beauty who follows conversations back and forth, craning her neck when her daddy speaks, contemplating with the wisdom in her face that only a newborn possesses, has completely stolen my heart, making me reconsider that man with ALS whose picture was taken in Millennium Park. Her birth was an epiphany, a realization that often the person we think we are is not reflected in the physical self we believe we project.

One of the most overused terms of leadership theory is the term “transformative.” When it was first proposed, transformative was in direct opposition to transactional, implying an experience possessing tremendous significance. Now, I have reached the point where I avoid the term as best I can, because it is applied equally to events ranging from putting up new signage in a building, to rolling out a new advertising campaign, to completely changing the culture of an institution caught in the ruts of its own history. For me, transformative has lost its significance.

Today, I must break this self – imposed rule of usage, for I have been transformed.

I now look at the picture of the man in Millennium Park, and I realize he is waiting, waiting for something that will transform his outlook, reminding him that dis ease is more than ALS. I now look at the picture of that man and I see love waiting to pour out on a tiny, helpless, long awaited babe. I now look at the picture, and I don’t see ALS at all. I just see me – heart open to the perfection and possibility of my beautiful Hypatia.

Suddenly, I believe we are both picture-perfect in our possibilities.

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Dis Ease Yoga

Before ALS, I honestly believed that yoga was for my wife, not for a weightlifting, biking, swimming, semi-running 50 something-year-old male who knew he was going to live forever. I thought it was nice for the YMCA to offer yoga, even though I believed their main focus should be on weightlifting and crushing physical fitness. I suspect that many hold the same perceptions, believing as I once did, that yoga was for other people.

It took a diagnosis of ALS and an awakening to the phenomenon of dis ease for me to reconsider.

For many months I have held words and thoughts and symbols and sighs in my heart concerning my practice of yoga. For many, the idea that a person with ALS, unable to control any physical function, totally reliant on the good will and expertise of volunteers and loved ones, would state that he is practicing yoga might spawn incredulity. I might’ve seen it the same way two years ago. But the yoga story that I carry is one that has given me deep gifts, both tangible and intangible. And I want to share some of that gift today, not because I believe you should become a Yogi – a student of yoga yourself – but rather that in this particular experience is the complexity of human dis ease, what it means to have ALS, what it means to excavate your spirit until your ideas of success and failure, growth and regression, awareness and unconsiousness are turned on their ear.

Let me start with the physical act of yoga. I go twice a week, on Monday evenings with either Ev or my kids, and on Friday with good friends – yogis in their own right – who very generously donate their time and physical strength to support my practice. The classes are a part of Mind Body Solutions, a nonprofit founded by my teacher, Matt Sanford. Matt’s story is remarkable, but he tells stories that are even more so. His yoga practice awakened him to realizations that the body and the mind are inextricably linked, that injury and disability are circumstantial and not destiny. He teaches numerous practitioners and other teachers, and there is a remarkable group of instructors associated with MBS that are skilled and loving and every bit the teacher that he is, only in different ways. I cannot pay a higher compliment to the master teacher that Matt is than to hold up the teachers that he has awakened.

The Monday and Friday classes are decidedly different from one another. The class on Monday schools me in understanding the ways my new body works. There is great attention paid to the smallest detail in the spine, the diaphragm, the energy of breath as it flows from grounded space out through the limbs, head and heart. And while it may not look like we are accomplishing the poses, each of us – those with traumatic injury, cerebral palsy, MS, chronic pain and even me with ALS – finds our own way into the knowledge and practice our teachers present. To illustrate, the concentrated focus on spinal energy for a person with ALS, a person that one would assume has lost spinal awareness, reveals vast spaces for spiritual growth in spite of the physical loss. Monday nights challenge me, requiring faith like preparation before the practice.

The class on Friday is different, more about the pose, with the teachers purposefully seeking a meaningful way for our bodies to enter the yogic space. Friday is closer to traditional yoga classes, more about the broader practice than the details; and the benefits for the students, particularly those physically strengthened by the practice, are tangible. The students who so graciously allow me to join them on Friday are remarkable in their physical progress. Some show new capability, and in their joyful growth, I must remember that even though ALS robs me of the ability to gain strength from physical activity, my practice of a yogic routine has enormous emotional, spiritual benefit. And of course, there is definite physical benefit in moving a body confined by paralysis. Each class is different, neither better nor worse but complimentary one to the other.

After each class, I am exhausted yet more aligned in space than before I began, more alive to the spirit in the breath, more engaged with the beauty of human-to-human contact. I mark epiphanies exploding into my awareness or creeping quietly into the edges of consciousness. Each of these classes requires physical engagement, more than was ever required of me when I was able-bodied. The philosophy of MBS is to illuminate human understanding through the more readily discernible physical act while challenging us to find deep meaning in the discovery of this very transient and unique envelope of a body that each of us brings to the practice. And strangely, my soul is engaged. No wonder I am so tired at the end.

During any given class, at any given time, I can expect that the practice will remove my carefully constructed façade, layer by layer, piece by piece, until my dis ease is fully exposed.

The experience is more complex than anything I have ever encountered. On the one hand, it is not uncommon for me to focus on some small physical requirement, one that I could do even one week ago, and recognize that it is now impossible without the aid of another – and I grieve that loss in momentary gulps of realization and sorrow that passes through me like saltwater tears. I cannot help it, marking the losses week to week.  Often, as I observe the diminishing physical space I can meaningfully claim, circling down into my own constricted tangible essence, a thought will arise and I will question the attempt, asking questions of myself like, “Who do you think you are to even attempt such a thing? You have ALS. Why are you wasting these good people’s time?”

Then I remember what I have learned – yoga is not in the physical act. The pose is just an avenue to deeper insight, an expansion of breath against the restriction of some perceived elastic band around my torso, an opening of heart against fear of awareness. Awakening to such psychic, spiritual, emotional, faith-filled space holds at bay the panic hidden in the physical loss. It is as if I am on the circling gyre, simultaneously spiraling up and down in opposite directions – one spiritual, climbing into the rarefied awareness, and one physical, falling into deep velvet loss.

I do not know how long I will be able to continue. I hope until I die. Each week is an intertwining of grief and joy, and that seems to me correct.  ALS requires it, Dis ease insists upon it, so that in reality the practice for me each week two times is balancing tears and laughter, realization and unawareness, the spiral up and the spiral down, each week, two times, preparing to do yoga.

And I doubt if I will ever be svelte enough to dress in that specific yoga way.