Triunity

There are many things that make up a life. We usually identify the external markers of one’s existence: education, professional attainment, family, friends, social influence, interests. But the journey with ALS makes you think more deeply about the internal construction of a person’s identity. As I have grown older, I have come into contact with a range of life transitions that have altered my own relationship with living, because I see in others so many manifestations of what it means to be human and alive. That is what I want to try and explicate in this post.

For those of us who have lost a parent or person close to us, we have encountered a range of conditions that make the loss very different in its presentation, expression, and conclusion. I lost my Dad nearly twenty years ago. He lived into his 80s before cancer found its way to him, and from that point he was in a battle with physical (bodily) decline. When we lost Dad, his body could not endure in the face of his metastasis. When Mom followed in her own passing several years later, her decline was quite different. While she remained physically robust, dementia slowly presented itself and ultimately took her mind. It was years before her physical condition yielded after a period of confusion that was often marked by fear.

The progression of ALS is quite another thing, and it stands our normal relationship with physical decline on its head as it stops not at an organ but slowly proceeds to render much of the body unable to move. Eventually it compromises every neuromuscular connection in the body, leaving many with only their eyes to look out onto the world, prisoners in their own bodies with active minds but no means to easily articulate their thoughts. The advent of eye-tracking technology has allowed these patients to engage with computer applications and even compose emails or messages (or author books in some extraordinary cases) using the last physical connection to the world around them--their eyes.

I have read over the past few years that developments in robotics meet significant limitations when they are not also embodied. The things that we experience through our bodies and senses are so critical to understanding the world that simply placing information into or in front of a computer device does not fully capture (or enable) that which is human in our engagement with the world. It is remarkable that the Christian faith speaks so directly about embodiment and talks about the anticipation that we will receive “new” bodies, perfected bodies, in the life to come (not to mention the sacrament of Communion). This is not a blog about faith claims, so I am only mentioning this in passing; but it betrays this profound link between the mind and the body, discerned by people we now consider less sophisticated and ancient.

This connection between the mind and the body seems straightforward until one encounters how altering this relationship can change everything we take for granted. For instance, a person can emerge from a traumatic event, perhaps remaining in a coma; and we are left to wonder, absent spoken communication, whether they are aware and still processing memories without the ability to interact. In ALS, however, rarely accompanied by dementia, the physical progress of the disease can and does leave a patient essentially at a place where they can become nearly “locked in”. Technology has opened this door to the mind for those with ALS, defying the body’s wholesale decline, restoring conversation and shared understanding of the world.

This renders ALS such a difficult condition. Those who are under its progression watch particular aspects of their body taken from them sequentially. In “limb onset” ALS, it may begin in a foot or arm and progress slowly; but in “bulbar onset” ALS, the condition most often presents in a disruption to a person’s speech, restricting the ALS warrior to more limited tools with which to engage the world (to embody their mind in the world) until that bridge to the world is taken. The mind, by having its critical link to the body interrupted, must adapt in significant ways and we must adapt to those progressing with ALS.

As human beings, self-conscious co-creators of the world around us, this point in time disturbs us greatly. We become accustomed to the range of actions available to our loved one, and it is jarring to see their co-creator status diminished. We begin to grapple with the notion that human beings are not mere deterministic organisms, interchangeable and predictable. Where we once had the ability to step literally AWAY from our bodies with our minds, evaluating both past actions and future possibilities (even our eventual deaths), our opportunity to use our bodies to aid in productive work has been reduced. Does that mean we are "less than"? The scientist, Stephen Hawking, lived through the assistance of technology and supportive friends for several decades in this space. Having journeyed on this road with Deb for two years, I see us developing a wider palette for understanding a fuller sense of meaning and value.

This “untethering of the body” leads me to think more fully of the spirit or of the soul. Having once encountered a person, and even more so a person in which you have invested tremendous vulnerability or been impacted at a deep level, carrying that person’s spirit is a profound gift. The power of the spirit, both among those very much with us and those who have left us in a physical sense (whether leaving for just an extended absence from us or after passing from this world) is something that should occupy a far greater share of mind for us than it does. As I sit each day in Deb’s hospital room, and I see her engagement with the hospital staff, nurses, and physicians, I see a person who is fully differentiated from the patient in the next room or the next. And I see someone who can, on many levels, “leave” her physical body and soar above those of us still endowed with all our physical resources, bringing laughter to those around the hospital room, even filling the eyes of new acquaintances with tears from a deeply-rendered piece of advice or encouragement shared through a gesture or a painstakingly-written note. Her medical condition may be indistinguishable from her body, and it grates on me when people raise their voices in Deb's presence, feeling they have diagnosed in her a hearing loss; but there is something far more beautiful going on that emerges. It is informed by her mind, yes; but it is even more deeply influenced by, and under the control of, her spirit, a spirit that she has nurtured and integrated over a lifetime. These habits have literally rewired her mind and body into a shape that is unique, angelic, distinct from any other human being. A shape that is truly beautiful. That is true in this life, and it will be no less true in twenty years or a hundred years. I refer to it as a "triunity", the title I chose for this post.

I am more inclined toward the idea of eternal life at my ripening age than I once was, accepting all of its complexity and questions. I believe that we so easily miss the forest for the trees in so many things that are far more profound than we credit them. This is one small reason why Deb and I rarely miss watching "It's a Wonderful Life" each Christmas. Studying each of the main characters is both a rich tapestry and a mirror. It will be on the docket, again, in a few months.

We are going home to Maine soon, providing we earn a successful "checkout" from Spaulding Rehab Hospital (meaning a combined stabilization and demonstrated proficiency with home care), opening a new chapter in the progression of this now-familiar fellow traveler we call ALS. At times, it can be brutal. And it can also open profound windows onto gratitude and beauty. It is tempting to let our minds drift into an imagined alternative life where ALS never touches us. The true reality, however, is that we each wrestle with a range of life challenges that we simply encounter or actively mold and create for ourselves, making some outcomes fully amazing and leaving real degradation in other instances. Through prayer and acceptance, we can discern lights in the darkness, lights that restore our ability to see the things that can never be taken from us. We can transform our regrets through forgiveness, and we can direct our bodies and minds forward toward beauty if the soul is willing and directing us. I see this on display every day, and it is wonderful.

Isaiah 40:31 But they that wait upon the Lord shall renew their strength; they shall mount up with wings as eagles; they shall run, and not be weary; and they shall walk, and not faint.