One of my favorite poets is e. e. cummings. I spent a few years absorbing everything I could find of his work, and credit him with catalyzing my exploration of what “capital letters” meant to me. Indeed, in the early years of email, I sent all messages lower case only. I think some folks found this a little odd, but it was a phase of self-awareness that served me well. It is also the thought process that led to my naming my sole proprietorship “courage” with a lower-case first letter. The use of “capital letters” tends to introduce differentiations among the letters, declaring some as more “important, powerful, influential, or significant” than others. The caste system of the alphabet!
This explains my failure to provide “capital letters” in the title of this blog. I want the two constructs presented to be clearly understood, yet also realize that they can be super-charged words. By keeping them lower-case I want their meaning presented, but without excesses in impact, meaning or intent. They are important; they are not the whole story or the most compelling story.
And my explaining the two terms has the same purpose. One definition of the adjective “dystopian” is “characterized by human suffering, misery or injustice”. This is the definition I am using. One definition of “distress” is“unpleasant emotion, feeling, thought, condition, or behavior”. This is the definition I am using.
Having slogged through all of that as prolog, my short first message in this blog is that “dystopian distress” aptly describes one dimension or portion of my lived experience right now, and I have concluded reflecting on this fact in this blog may be useful to others. I have a hunch that “dystopian distress” may be an experience others who have aged may recognize, and I decided I want to give it some air time, start a consideration, look for consequences and alternatives.
My reflections here relate to two prior blog postings. One described my process of adaptation to address my decline through aging. The other shared my plans for moving, a cross-country relocation. They are irrevocably linked. The first describes the value of immediately finding and implementing adaptations to self-observed age-related declines. The second describes my current investment in reinventing myself, in part achieved through a cross-country move. The first makes a case for stability and the establishment of an “even keel existence”. The second makes a case for the necessary process of disruption and change to ensure continued growth and self-realization. The first describes a way to manage the impact of the loss of function through aging. The second posits that aging includes the commitment to continued growth, development and self-actualization.
I took a trip to celebrate my 80th birthday with my daughters, their partners and my grandchildren. It was a grand gift, a week on the Pacific shore, and I enjoyed every minute. I then went rental shopping in the Santa Barbara, CA area where I intend to move. I was very successful, and left with a signed lease for an apartment that exceeded my hopes. This all sounds like a whole lot of good news. And it was, and it was also a reckoning.
While I was busy reinventing myself, I discovered that much of my adaptation to decline depended on set patterns, familiar terrain and options, focused awareness on the task at hand, and creative problem solving where I controlled the options. All of that abruptly disappeared during this trip, and I found myself persistently challenged to sustain well-established adaptations. Here’s an easy example: because I have compromised physical balance, I avoid stairs. This trip required using lots of stairs. If I must use stairs, I require myself to focus on each step before moving. On this trip, all those pauses were often difficult, even impossible to achieve. And when I took them, I discovered others often saw them as serious decline indicators, not responsible adaptations.
This is only one example, and each disruption of my adaptations increased my distress level, in part simply because it seemed to me that I was self-presenting and being perceived as far more in decline than I actually think I am, more “atrophied” than I believe myself to be. It was painful and felt “unfair”, as if I were being evaluated with a distorted scale, both by myself and others. It was also never clear to me whether I was assessing the responses of others accurately or just engaging in projection. Finally, the experiences triggered self-doubt: was I failing to be honest with myself; was my decline more dramatic, extensive and “dangerous” than I acknowledged? The inner agitation had a flavor and nature unfamiliar and unwelcome, and often painful.
My efforts to articulate my distress seemed to only intensify the perceptions, the uncertainty and the distress. Another easy example: I manage short term memory decline by simply writing down things I want to remember, usually on a 3 x 5 index card. The deck of cards is my mobile memory, something I acknowledge with humor. During the trip, I had neither the time nor the opportunity to establish a way of continuing this practice, and hence my memory patterns looked more deteriorated.
All of this was extremely distressing as I experienced it, and it took me a while after I returned home to make sense of what I had experienced. Eventually, I found the descriptive phrase that worked for me: “dystopian distress”. I liked this phrase because it captured the discomfort and the sense of disadvantage in the response. I have worked hard to create adaptive patterns to manage my aging decline. It has been my commitment to optimize my functionality with the conviction that society would benefit from engaged, resourceful elders who would share their wisdom. The disruptions of change, travel, new vistas, the assessments of others…all that seemed to have made my adaptations unequal to the challenge they faced.
It took me a while to decide to post this blog. The deciding factor was a belief that my experience was not unique or unusual. Careful adaptations to cope with the decline that accompanies aging can be easily disrupted, and the sense of discouragement, even despair that the disruption can create is significant. Even more distressing is the realization that the larger society already has a “decline alert” perception of aging persons, so your indicators of decline are of greater interest than your adaptations.
I started wondering how many aging people, having experienced “dystopian distress”, just gave up. Maybe this was part of the aged “fade and disappear” pattern so common in our culture. I do know that it seemed to me that observing and noting my decline was of greater interest than admiration of my adaptation. I also think there was no acknowledgment that my patterns of adaptation were being disrupted, and I was unable to explain that at the time. My functionality was compromised, as is true for all aging persons, simply by my decision to go beyond my established adaptive patterns. I keep wondering: is this the only way for this story to be written?
I started wondering how often that happens. Do we focus on locating the decline and fail to notice the adaptations? If the adaptations are disrupted, do we believe they do not exist? How often is the evaluation of decline in those who are aging made by persons who have no knowledge of the experience or the adaptations, and hence are unable to make objective assessments? When did noticing decline become the focus? Why is there so little focus on adaptation? Can we shift enough to create accommodations designed to augment disrupted adaptations? Can this become a societal goal? Is having the Wisdom Work of the elders worth the effort?
I felt I was swimming in the deep end of unexplored and unacknowledged, potentially unconscious responses to aging made by those who observed the process but were not yet in it. I recalled several years ago purchasing numerous books on aging to try to understand my own developmental challenges and suddenly realizing that they were written by people imagining aging, not experiencing it. The act of imagining itself made me cautious. I realized for many this could simply be their dismay at seeing the indicators that decline hinted at: dying and death.
So, I decided to write this post, which has taken me a long uncomfortable time. It is my hope that it sheds some light on the complex phenomena that shape the experience of aging in the US. This involves both the experiences of those who are aging and the “reactions” by others to those aging, the latter including those who care deeply about them.
My oldest daughter provided a perfect antidote to “dystopian distress”. She shared how excited she was that, using my walking sticks, I had tested and succeeded in walking on hard sand where the sea meets the land, and discovering I could use this as a practice for my daily walks, once I was joined with the Pacific Ocean. She has the right idea!
“Birds make great sky-circles of their freedom. How do they learn it? They fall, and falling, they’re given wings.”
- Rumi -
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