Summer Whispers

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.


9 thoughts on “Summer Whispers

  1. Dear Bruce, We love you so and all that is yours and has been
    and will be. Thanks so much for the insights you bring. bw

  2. Yes, indeed, what remains is still you – none of it is lost. That’s what struck both of us in our precious time with you. So, though we can’t know the answers to most of the questions in that paragraph, that last one can only be answered, “Of course.”

  3. Every step we take changes us. In heat or rain or snow each step will have its own challenges. I am grateful for your views. Yes, I am even grateful for the changes you, we all go through.I am grateful for each breath we are all able to take. I am grateful for our love together.

  4. The capacity for love is boundless. It must be so with grace. As mortals, we live it, though imperfectly. We say things, think things, do things in the fear or pain of the moment. Then, we open our hearts and Love and Grace bring us back into focus. Hugs to you and Ev.

  5. My Dearest,

    I take exception to your statement that ‘a man who cannot dress himself is a care receiver, not a caregiver.’ I think your definition for ‘caregiver’ is far too narrow. It is possible that even in receiving care for the most basic of tasks, you are also a caregiver. As I lift your legs into bed at night, you lift my spirits with your silly jokes after a tough day. As I ease your feet into your socks and shoes, you ease my mind with the courageous way you continue to look squarely at the devastation and forge ahead into the future. As I dry your back, you dry my tears with your words of love and comfort. Neither of us asked for this path we are on, but it is an honor to give care to you as you have given, and continue to give, care to me.

    • Ev, what a beautiful way to express your caring. My husband also has ALS, and many times feels like he’s such a burden. While it’s certainly more challenging, he will never be a burden. I know if our roles were reversed, he would do the same for me. For now we rejoice in every Sunrise and Sunset!

  6. Yes…..I have experienced that caring, and the giving and living out of that care, takes many forms. And so – the word has been fleshed out fuller in this experience in our lives as well. Blessings to you both as the giver and receiver roles continue to intertwine.

  7. I will be forever touched by the love I have wittnessed between my sister and my brother-in-law, whether it is with the words I read from them, the voices I hear as I speak with them, or with what I have seen last time I visited them. Sorrow and joy are mixed together into a bittersweet fragrance which will never be forgotten. A man is not defined by his physical body, but by his heart and his soul. Bruce, there is NOTHING dis eased about your heart and soul. May all of us learn from the example you two have shared through your love for each other.

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