I took a vacation – really, a staycation – spending the vast majority of my two weeks off at home. This was a very different experience for me, for even with last summer’s realization that ALS had the upper hand, I still tried to get us out of town and far away so work could not intrude (or at least I was too far away to do anything about its intrusions). Such hasn’t been the case this summer. At home, each morning I rolled into our den, opened up the computer and dared my work to get into the face of my time off. Admittedly, this lack of boundary was a subconscious recognition that ending my time as a working adult is now plainly in sight. Maybe secretly it was the desire to continue the engagement, even when I was supposed to be off. On the other hand, the new logistics of travel (mostly associated with bladder capacity and the need for a Hoyer lift), also dictated the appropriateness of a staycation this year. So this summer’s vacation has not been one of travel’s explorations, but discoveries of inner thoughts and feelings and realizations and hopes.
The algebraic formula for Summer 2012 clearly graphs as hills and valleys. One week, ALS is nothing more than just another life adventure. The next it is a cascading series of physical failures. Joy and sadness are constant companions on this roller coaster, heightening the experience of peaks and troughs. There are days where I look at my condition and think, “I’ve got to get on top of this. I need to do more to stay ahead.” There are other days where such thinking seems absolutely futile, a waste of energy, frittering away time on details wrongly focused. Like so many who play out the normal process of aging, I have realized what is to come. Like the few who have ALS, my epiphanies take on the urgency of too rapid physical loss–Bruce with ALS Version 3.0.
Apparently, all things must pass.
Whispers of the future of the work that I love–the future of my college, in context of the future of my University, in a time when the future of higher education in America is a mystery–loom large. It is a compelling call, one that I wish I could engage into the next iteration, and it is no small thing to admit that the needs of participation in the upcoming dialogue lie beyond my capability, my capacity, my energy. Like so many institutions, we are caught between the desire for excellence and the need for efficiency, making us a target like any other consumerist entity–eyed by robber barons, ripe for takeover to be chopped up for yield, ideal for new narratives about the virtues of competition by lean for-profit companies who build easy myths that they can do anything better, education as commodity, markets über alles. Effectiveness and efficiency are not mutually exclusive, but they have become diluted by bottom lines – profits are the final arbiter, conservative and liberal do not share common bonds, unlimited growth can be achieved, there will never be a clear definition of what is enough for the well lived life. Higher education carries with it a specific responsibility less and less clear in the minds of Americans, its role as the great equalizer now seriously questioned – sometimes for very good reasons and other times for reasons spurious at best.
Somewhere in the conversations we have deliberately or inadvertently forgotten how seductive ease is to human desire. Somehow the work of the mind has become divorced from the work of the hands. Somehow the idea that ideas are not practical and practicality is the greatest measurement of value has wormed its way into our collective psyche. It is our national version of dis ease, the artificial exclusion of intellectual from artisanal, thinking from doing, performance from preparation, theory from practice—these deliberate dichotomies valued by the pundits and politicos so that their efforts to make these concepts understood below a fifth grade level can divide us, human from human, so they can scavenge the flotsam and jetsam of our confusion, while we remain disheartened, dis eased in our own space. Every good athlete and musician knows the intersection between mental preparation and physical performance. Every good teacher knows you must not make things too easy. Ease is best for propaganda, not education, and once people expect ease, they become less discerning, less creative, less human. It is a question of balance, and the balance right now is not fair.
ALS tears down all old frameworks, dis ease insists upon adaptation. Summer reflection is more than the context of work. Family whispers.
They are my true loves, and my placement in their midst as self-appointed paterfamilias no longer feels easy. Distinct markers redefining the evolving me are clearer. There was a time when I defined myself as the safety net for my sons, my partner Ev. That is no longer possible for I have neither the resources nor the energy for such backup. Our knowledge of each other shifts, crawling into our superficial awareness or hanging back just out of reach of conscious discernment. But we know.
A man who cannot dress himself is a care-receiver, not a caregiver. A man who each day must check the proverbial gas tank, mentally running through lists of new or potential physical loss– increasing reliance on others for the most basic needs, seeking safe havens that do not test corporeal or psychological energy—must leave behind old assumptions based in past ability. All of this is more and more obvious, barely spoken, gaining the traction of consciousness. And what remains is still me –love and history, good and bad, humor and sadness, musician and athlete, intellect and artisan, foolish novice and wise veteran– none of this is lost. It remains a powerful binding force holding me, us together. We persist but for how long? Will I see the paths my children have chosen, flowering into the human beings I only imagined at their births? Will I see their children, carrying on in a world more globally robust yet less locally connected? Will I see my 57th or 58th or 60th birthdays? Will all of this so totally break us that we end up grim and greyed by the experience? Will we continue to meet the losses with new capacity for grace?
Summer vacation is a treacherous time, especially when time lies heavy on your hands.
In Minnesota, August brings regret and anticipation. We look back on the heat of the summer with our big summer plans and sultry anticipation of the good times to come, and we regret that we did not fulfill what seemed so possible in June. But we also look forward to autumn nights, chilly and crisp and cold, knowing that there still may be one or two 90 degree days left, enough to grab another inch of summer to warm the heart during the gray-blue cold ahead, appreciative of the stark insights winter begets. Reflection and discernment are not exclusive to summer vacation; they just focus into warm streams of consciousness at that time. There will be more realization to come, for dis ease insists upon it.
And I want to be there, if only it will have me.