An Update as of 11/1/13

The last few days have been Murphy’s Law sort of days. First, Bob’s laptop died as he was trying to revert from Windows 8 to Windows 7. Then three separate things went wrong with our water, requiring us to call out three separate companies to set things straight. Then, to top it all off, our phones shorted out creating static and cross-over between our two lines. As he always has done, Bob took charge of managing all of the needed repairs as well as the comings and goings of the various contractors.

Our phones have been problematic for much of the last year, ever since we moved Bob’s office up to our dining room in the fall to make sure he was safe after we arrived home from our time at the University of Virginia medical center. Moving his office upstairs during that interim period meant that we also had to adapt our phone wiring so that his dining room office would have phone and Internet. That turned out to involved a lot of jerry rigging, and Bob had not really been as ready to take on that challenge as he’d thought he was.  

This time, I persuaded Bob that it would be worth calling the phone company for assistance. Chan, the guy who was sent out from the phone company, got way more than he bargained for.  When he arrived, Bob told him “this could take a while, our phones are really a mess.” Chan shrugged it off.  “This is what I do” he demurred. He got to work, with Bob in tow as the two of them puzzled over the confusing mess of wiring. Bob and Chan developed a sense of camaraderie as they worked side-by-side, testing wires and sorting out tangled circuits. Four hours later, the two of them laughingly congratulated one another for finally having gotten the whole system working properly.

That’s when I reminded Bob that today was the one year anniversary of his homecoming from Charlottesville. That day, as Bob wandered through the house with Bryn at his side, he was incredulous, arms outstretched in disbelief. “We live here?” he’d asked. “How did we come to live in such a beautiful place?” He had no memory of living in this home where we had lived for ten years.

At that point, we did not know how much of his memory or functioning Bob would eventually get back. We were just glad to have him alive and well enough to be back home. These days he gets frustrated that his memory issues are still such a challenge and he is not at the top of him game cognitively. But as we realized the significance of this anniversary, and realized just how far he has come, we couldn’t help but cry tears of gratitude in each other’s arms.

Thank you for the ways that you each have contributed to that healing through your thoughts, prayers, and acts of caring and kindness.

-Megab=n

An Update as of 10/27/13

https://www.youtube.com/watch?v=0L16DsNfM2o

On Sunday, Oct. 27, Bob was invited to preach at our church, the Williamsburg Unitarian Universalists. You can read his sermon at  http://www.lifetrekcoaching.com/provisions/20131027_Seized_by_Life.htm . As part of the service, I was invited to share the Call to Worship and a sharing time that we call “From the Heart.” My dear Erika asked me to share what I had said, so here it is.

Call to Worship

On a bright morning in late August of 2012, my husband Bob slept late. That was unusual for him, but he hadn’t been feeling well the evening before so I was glad he was getting a little rest. As I brewed a cup of tea for him and grabbed the morning paper to take to him in bed, I could not have imagined the ways that our lives were about to change—how serious illness was about to rock our world, to shake our assumptions, and to bring us into a close encounter of the mystery that lies just outside our awareness as we scurry through our ordinary lives.

A few moments later, as Bob carried that tea and newspaper to the kitchen, he was felled by a massive seizure. I heard him growling and turned the corner just in time to see him tumbling down a flight of stairs.

Bob was taken by ambulance to Riverside Hospital and a week later med-flighted to the University of Virginia Medical Center, where he was placed in a medically induced coma to stop the fire storm of seizures that was going on in Bob’s brain.

Three weeks later, on Sept. 28, as he began to come out of the coma, Bob began to open his eyes and was able to follow our movements around the room. The next day, I shared this news with our family and friends. 

Today was a happy day! Bob was more alert and more responsive than he has been since he was first sedated.  His eyes were showing recognition of us, and he could communicate by blinking his eyes. By the end of the day, he was able to nod slightly, make facial gestures, and mouth simple questions like “What happened?” and “When?”. He got a case of the giggles this afternoon, and his silent laughter was infectious even though it caused all kinds of alarms to go off on the breathing apparatus, and sent him into a coughing spell. [Such joy at finding himself alive!]

Bob is still extremely weak from laying in bed for four weeks without moving. Bob can move his fingers and toes now more consistently, and with assistance was able to move one of his arms up to scratch an itchy nose.

Bob really seemed to remember things that we talked to him about, like running marathons and where he grew up, as well as the family and friends that we talked about. His short term memory is not as good and may take some time to recover. So I answered his questions about what happened, when, and where we were many times throughout the day. I also told him again and again that thousands of people around the world were praying for him. He often mouthed “Wow” when I told him that.

As I was getting ready to leave this evening, Bob kept mouthing something that I didn’t understand. I reassured him the best I could that he shouldn’t try to figure it all out tonight and that he should try to get some rest, but he didn’t seem satisfied. It was breaking my heart to leave him seeming so unsettled, but it was shift change for the nurses and time for me to go. When I turned back one last time at the door, I suddenly understood what he wanted. He was saying “I want to pray.” When I finally understood, his eyes lit up and he nodded. I came back and offered a heartfelt prayer for Bob’s healing.  The anxiety melted away from his face, and I was able to leave him in a much calmer state. So I am pleased to add one more heart to those thousands lifting prayers for Bob’s healing -- that of Bob himself.

A week later as Bob was able to sit up in bed and was gradually coming more and more back to himself, he shared this poem by David Whyte called What to Remember on Waking. This poem  had meant so much to Bob even before he got sick that he had committed it to memory, but it took on entirely new dimensions as Bob was waking from a much deeper sleep.

            Video (http://www.youtube.com/watch?v=0L16DsNfM2o )

Come, let us explore the mysteries of intersections of life and death, and the ways some of those mysteries can be revealed in serious illness. 

From the Heart

I count it a privilege to accompany Bob on this frightening and uplifting journey of healing that we have been on. It is not over and it remains uncertain what is yet ahead. Bob still struggles with daily small seizures that we call “blips” and occasionally even stronger ones. His memory is significantly impaired, making it difficult for function in the ways he is used to. And, as predicted by the MRI, he is more emotional than he was, having become quite tenderhearted and easily brought to tears.

As I have taken on more of a caregiving role, I have been reminded of some truths that came to me as a young mother from a book called A Way in the World: Family Life as Spiritual Discipline.  In it, Ernest Boyer Jr. describes the spiritual intentions and ambitions of the ascetics who have chosen to live in harsh and barren places in order to deepen their spiritual awareness and knowing. Describing the challenges and demons they faced, the author then draws a comparison to the spiritual discipline of caregiving. He points to the demons of boredom and resentment, as well as the discipline of self-care.

Boredom. Caregiving often involves repetitive and sometimes monotonous tasks. We have no sooner finished the breakfast dishes when it is time to begin thinking about lunch. We tidy up the playroom in the morning, knowing it will have to be tidied again in the afternoon. The challenge is that the human brain seeks intellectual stimulation through novelty – people may find this in novels or movies, in music or travel. Learning to find a sense of meaning and purpose in the repetitive tasks of caregiving can be an arduous spiritual practice.

Resentment. When one party in a relationship needs greater care, whether due to youth, infirmity or age, it creates an imbalance in the give and take of a relationship that can lead to resentment on the part of the one who is giving greater care. Fortunately for me, Bob has been very expressive of his gratitude for my care, but for many care receivers coping with the discomforts and frustrations of their condition may lead them to be difficult, impatient and demanding. This can hurt the feelings of the one who is offering care and over time can lead to feelings of resentment. Learning patience in the face of impatience is another challenging spiritual practice.

These two challenges point to a third essential spiritual practice -- the discipline of self-care. In order to ward off the demons of boredom and resentment makes it essential that find ways to attend to our own needs in regular, consistent ways. This may be as simple as a daily walk to clear our heads, or quiet time in the mornings to read, think, or pray. But without this discipline, the demons are likely to loom large. 

This is not a journey that either of us would have chosen, and yet there have been incredible blessings along the way. One of ways we have been blessed has been the myriad ways that people have reached out to us in care. One of those that stands out in my memory is from an angel right here in our midst -- Sally Fisk. Sally was able to put into words how this experience of crossing over from the world of the well to the world of the not-well has unveiled some deeper truths. She wrote:

From my own recent illness, I have begun to learn the (both) heartbreaking and sometimes generously beautiful truth that life is a force beyond my knowing, beyond my control. I will keep my heart open and receptive during the cyclical twists and turns of Bob's, and your, healing. Gifts can come in unimaginable ways.

Over the course of my illness, the most challenging reality has been and remains the cyclical nature of healing. It is not linear. It circles up and down, sideways and back. I would make a step forward and feel the rush of hope, catch a glimpse of my old self, see the possibility of having my health restored. Then I'd stumble backward and fall under the crush of disappointment, and sometimes despair, exhaustion and fear. But then the cycle of healing would lift me upward and hope would come again, and yes, the cycle down also came again --- and again and again. It is very rough going, no doubt about it.

For those of us who are used to linear movements, quantum leaps, and seeing our intention and skills bring impressive results this cycle stuff is hard to take. The "set-backs" can bring us to our knees. But I can assure you that there is a strength building deep within you both. You will find your way out of deep water to the shore. There is something very powerful in motion. I cannot name it. But I have experienced it and received its gifts. You [my friends] will too.

-Megan