Playing at Control

A rare selfie.

As ALS progresses, you notice changes in doctor visits. Things start out focused on physical assessment: what is going on with various functional areas around the body? This builds a baseline from which to measure the progression of what will come to be seen as an evolving “new normal”. Moving through time, you unconsciously incorporate changes into daily routines, and strategies to accommodate these changes become part of the rhythm of the days. It might be something like taking pills with applesauce or pudding to help them work safely with the muscles when swallowing. When strength and balance are required, it takes the form of new hand-holds or a walker.

Any one of these things alone would be difficult to incorporate into a life that knew no limits: robust, athletic, always leaning into action requiring the body’s active integration. And you start to think more about the instantiation of the mind through the intricate nervous system and musculature of our bodies. As the mind sees its command of the body taken from it, you take consolation from the fact that cognition is rarely in the path of ALS. ALS concerns itself with the physical. But we are creatures who live in bodies, and we are beings who move through our lives with people around them. In our case, after nearly forty years, where one person ends and the other begins is a “line” that starts out bright and looks less and less distinct with the passage of years. Within our small ecosystem of patient and caregiver, modes of interaction between mind and body require changes in relationship. I began to think more about this when we started the RAPA trial last month.

The ALS Functional Rating Score-Revised (ALSFRS-R) is a questionnaire that quietly slipped into visits to the doctor, noticeable only after 3 or 4 examinations. It is the standard in the medical profession used to measure ALS progression, and it touches on things we all take for granted: swallowing, cutting food, speech, turning in bed, walking. This 0-4 questionnaire begins to draw a picture of where the disease has gone, and it points out the path it is taking. While the body changes, equally subtle is the progression of ALS in the ways in which you perceive the world through the body. And, as the body undergoes change, the mind to which it is intricately related begins adapting to new signals.

When we were getting ready to start the RAPA trial, we completed the familiar ALSFRS-R, as normal, and it might be administered on any given day by any member of the Healey staff. An additional questionnaire presented itself, however, and it was different. It focused on mental health issues. It was always administered by the most experienced professional on hand, and you could immediately tell it had a different tenor. Now the inquiry focused on the patient’s inner space. I will not recount the questions here, but they begin along the lines of “How are you feeling?” and move to more specific and sometimes darker explorations of the toll that ALS might be taking on the mind and spirit. It is conducted with direct eye contact with Deb; and, in that moment, I feel like I have been placed outside the examination room. In a way, I suppose, I have been. For as interconnected as we are spiritually and emotionally, we need to be our most honest selves when touching on these issues. And these questions are no longer directed just at Deb, but I am asked a similar set of questions that are equally disarming and (without adding drama) frightening.

A touchstone passage from Scripture that has guided our relationship comes from Paul when he wrote to the Ephesian church (5:31): “For this reason a man shall leave his father and mother and be joined to his wife, and the two shall become one flesh.” Over thirty years, these words became both an internal guide, a relational conscience, and a lens through which we can observe ourselves “outside-in”. The gradual adaptation of our “one flesh” ethic was imperceptible, and the word around which I most visibly see this right now is in the area of “control”. Our kids are probably the best to identify long-running patterns in our behavior if reflecting over the years in our family, as each of us assumed primary control over one area or another, but I became more aware of this give-and-take and recent changes thinking back to something said at our appointment last week in Boston.

Deb, from the first, was the COO of our relationship. She is objectively smarter. She has highly-developed empathy through which to monitor the family's well-being. She has been the steady and balancing opposite to my native personality. I came from a place of more disorganization, often attracted to areas that appealed to my curiosity: booking vacations, encouraging the exploration of new things. One of our friends, who is probably reading this now, said I would have loved to have retired years ago. My business career was more mosaic than laser beam. While I might have been the light on the train engine, even when choosing a novel route, Deb always ensured the train arrived on time. By necessary steps, that is all undergoing change now.

Now I need to be more structured. I have had to try and master the series of contingent activities that must be put in motion each day from rising in the early hours through all the steps until we put our heads back on the pillow each night. Medications, physical changes to the house, preparations for outings that take longer and require more coordination and planning. We took 13 pieces of luggage on our honeymoon to Switzerland (skis, bootsluggage, etc.), because Deb wisely wanted us to be prepared for a range of potential activities. Now, when we go on a trip, I am the one packing bags of various sizes, some with ice packs or medical supplies, organizing things by function to avoid mishaps, and always commandeering a luggage cart. It usually works okay, but last week we drove home from Boston only to discover a glass (that's right) on the roof. This has definitely been a growth experience, but I can become imperious and very easily stressed. Maybe this is my redemption for a life lived more casually or maybe it is comic penance, but I am now witnessing too many days of over-gripping. And the truth of it is that some things cannot be forced, willed to be.

Deb, by contrast, has moved into a new mode that I adore. Humor is served up constantly, and it is delivered with Twitter-like brevity by the Boogie Board or text-to-speech app (always in a female voice with an accent), as well as through physical expressions like a wave of the arm, a thumbs-up or a faux-stumble. Much of it evidences an awareness of the new normal, occasionally in light-hearted defiance. As I mentioned in an early post, a friend said that we would record new and tender memories in this chapter; and I am amazed and grateful for all of these, just as I wonder whether my new buttoned-down tendencies are supplying similar moments to Deb and compensation for so many years of leaving little things for tomorrow. How the two of us slipped into each other’s shoes, so to speak, has been a curiosity. Our past can never be taken from us, and that is our deepest comfort some days. Deb now lives in the moment, and I am trying to live just slightly in the future even if only hours or days ahead. Deb has it right, again, acting as the fulcrum in our lift in this new and evolving dance.

If we are being truly honest, we confess that we have control over so few things. We embark on life with a plan, and we see many of those plans come to fruition over the course of a life. And we congratulate ourselves and our hard work or intelligence. Then a large bus hits your life. The good news, in our case, is that we were able to walk away from the crash scene for a time. And that time has been precious. Deb’s ability to take each day with gratitude is something she nurtured by her faith for decades, never imagining we would one day be here, but better prepared to face it with grace, I believe. The daily grind does not find us doing “high-fives” over our circumstance. But we look for meaning in each moment. The present. As I double down on my attempts at organization, I cherish each instance when I am pulled from my mental lockdown by my “partner-in-crime” as Deb has come to call me. All the mental notes and planning will not change that I must accept that I never will control the world around me or Deb's ALS. It is time to laugh, to remember, and to love. Deb has become almost Franciscan in her beauty and dignity in this chapter, making it clear that our “one flesh” is the corrective balance to my control. And accepting the limitations to my newfound sense of control will hopefully help me when I am next asked the caregiver battery of questions.