What Do You Do?

This is my first week of freedom from the work activities so at odds with my waning physical capacity, and I find myself answering more often than I would have guessed the question, “So, what do you do with yourself all day?”

This new normal of not working requires a settling period where the rhythms and tempi of dis ease can play out in quest of finding wholeness with what I can do, what is within my physical scope. I planned for this time as one plans the books to carry on a six month ocean cruise–sweet reads and thrillers and intellect and poetry and at least one book I should have finished years ago, War and Peace comes to mind. These reading lists are never complete, never adequate, often well intentioned, and in the throes of the vacation (technically I am on vacation until the end of the month), they are realizations of the accuracy of predictions for the time you have on your hands. Such is the new way of dis ease and its minion ALS, and frankly, I do not feel their gratefulness for embracing this new routine.

So, what do I do with myself all day?

I have planned for this time with a sense of purpose, much like I would plan one of our many travel forays in the near and far history of Bruce and Ev and fam. My experience is that travel is best when it is both deliberate and open to the reality of the destination. Beyond the breathless descriptions of the travel books and websites, travel is a dish best served with plenty of acknowledgment of just how little control we actually exercise when we leave familiar confines, especially in a place never experienced before. In my former life of working, I could plan because the work had such a familiar smell, taste, feel to me, and when control of that existence got away, I always knew where and how to restore the stasis needed to remain on an even keel. What I did not realize about this new normal in which I now find myself was that stasis would be the norm, and creative disruptions must almost be planned.

Before you decide I need to be surprised by something wholly spontaneous like randomly appearing clowns or the sudden sighting of balloon people, let me explain this planned disruption a little further. The creative force in my worklife was almost always the result of tension between what I knew and the unknown that existed outside the collective experiences of me and my team. As one who sought to pay attention to the complex balance of standard operating procedures and novel challenges I found the moral imagination required just to maintain stasis to be breathtaking, and I learned early on that it was important to be open to the reality that the standard operations in place were probably inadequate to the challenges at hand. In short, I learned that no matter how well you plan for the upcoming moment, there must be some space reserved for the fact that there will be significant differences between the moment as planned and the moment as experienced, and thus the need for systemic creativity and focus, whether it was a musical group or a college, was paramount.

One of the sweet, quasi planned-fors of this new post-work existence is lunch with friends. This week, I have had lunch four out of five days with loved ones, each with their own interests and joys and yes, the sustenance that I cannot furnish for myself. I cannot begin to tell you what this has meant to me. Each brings food and conversation, focus and the outside to a day that could easily degenerate into questions of worth–self, life, death. I have enjoyed this mid-day time immensely, more than I thought I would, given the dual meaning of my needs. My friends are so pleasant, and there is nothing so healing to the soul as food prepared or brought by another. And of course the meal radiates both the warmth of nourishment shared and the continued progress of a body winding its way to nothingness. We have forewarned all with a portent of things to come–“Please note that his hands are weaker so foods such as soups may require more assistance for him to eat.” Translation–this isn’t just about fixing him food. You might have to feed him soon–nudge, nudge, wink, wink. And so the days take on a rhythm that orbits around the golden mean of such dichotomous meaning.

So now, I experience my old normal leadership phenomena, only inverted and inside out. The purpose perceived from the planning side of the road looks a lot simpler than the purpose perceived after making the crossing. Like the difference between the map representation and the actual winding dirt ribbon that disappears into the distant hills, the journey only partially resembles the once predicted pathway. There are the inevitable bumps and gravel and potholes and detours, but it is the roar of threatening monotony, days too predictable, the sound of routine’s footsteps that haunt me. While I really hope this goes according to plan, it cannot be the lockstep, inflexible agenda one gets with booking a bus tour to “see” all the major sites of a city from the gawking safety of a comfortable seat, window in between, in three hours or less. Such a tour is maddeningly predictable and mindfully dulling.

And I admit, my new normal has some of that bus-tour flavor. It is easy to get up and let the time between my PCA’s departure and my friends’ lunchtime arrival whiz by in the windowed confines of my lovely space. Without moving, the outdoors is a blur of activity beyond my investigative ability. It is chilling, soporific and it blunts the intellect. And when all else fails, I nap profusely, accomplishing the work of winding down little by little, sleep to sleep to sleep.

In this new space, the disruptions for imagination and creativity, for meaning, for the very real work of living with keen awareness of my mortality, must out of eternal necessity, come from within. There is nothing out there that holds the same power or significance as the inside work I hope to do. I now fully understand why my grandmother said to me three weeks before her death, “I don’t want you to send me anything anymore.” And while I do not plan to die in three weeks, the material items of this plain of existence have been remarkably diminished in worth, and the only thing that has value for me that I feel has any relationship to wherever it is that the next destination takes me, is the love of friends and family, my one true love, as it has always been. If my arms could rise to the embrace, if my mouth could kiss this all away, if my tears could cleanse the doubt and physical memory where humiliation and regret live, if you could know how much, oh how much I love and feel and laugh and weep this new life; then, then what? It is almost on cue, the orchestrated life with chords dripping irony and quiet realization.

What do you do with yourself all day? I eat lunch with friends who don’t seem to mind my strengthening weakness. What do you do?


10 thoughts on “What Do You Do?

  1. Skip War and Peace. It is the equalivalent of a summer of General Hospital with a long boring treatise in the middle on just how awful is the industrial revolution. Anna Karenina, now that is an interesting book. 🙂

  2. I tend to move towards the outdoors. I was diagnosed with scleroderma ten years ago and I have spent way too much time in doctors/hospital establishments. I think I have become somewhat of a weather “geek” because my days depend on the weather. Those of us with these challenges can appreciate those days when we can be mobile or have to lay low and be grateful for the peace that day can provide for us.

  3. I read your blog so I don’t have to read War and Peace.
    Love Brian
    P.S. I think I got more respect when I was driving a Rollx Van.

  4. I have nothing profound to reply. I just wanted to let you know that I am thinking of you and missing my someone to sing to in church. I seem to sing better when I can connect the music I am singing with a member of the congregation. As always, thank you for sharing your insights. You make me want to live more aware. Blessings…

  5. I look for insight to guide my day…make me appreciate where I am, where I am going am help me to live a more purpose-driven life…today I will appreciate your words and reflect on what they have sparked in me…I will try to have a bigger picture in mind and not let the little day-to-day dramas take up so much if my precious time…I will love my kids and family more and schedule lunch with a friend and think of you.. Thanks for sharing so I can have a better understanding of what truly matters today.

  6. I help facilitate 3 different support groups; 2 for Caregivers and one for those who have lost a loved one from Suicide, but more importantly I try to live each day thankful for all the blessings that I have been granted. Your written words, and my family’s spoken words, help me to realize just how blessed my life has been. Thank you, Bruce.

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