Category: My Cancer

From Runaway Train
by Soul Asylum

Runaway train never going back
Wrong way on a one way track
Seems like I should be getting somewhere
Somehow I’m neither here nor there

April 2, 2015

I had a seizure on March 2, a day after my last post. It was my sixth seizure, overall, and the last that might count as a “complex partial” seizure. Since then I have had 100 seizures of the “simple partial” variety, in which there was no sudden loss of consciousness. Rather, my right arm (and, to a lesser extent, my right leg) seize up with a few seconds of warning (an “aura”), which manifests as a gradual tightening of the muscles of the shoulder.

Typically what happens is that my right arm and fingers curl. The elbow lifts and my own fist seems to want to punch me in the face. After landing a few of these self-hating punches I enlisted my left arm for help with blocking, which succeeded tactically but not strategically. Seizures are never to be restrained, according to the fundamental lore of epilepsy treatment, as my second neurologist was able to explain to me for the first time only at my third EEG, after I had been admitted to the hospital.

“The goal is ’no seizures,’” she said, introducing me to a new anti- seizure drug called Vimpat. It’s so new that there is no generic version, and because I have Medicare for health insurance, I’m not eligible for any of the modest discounts offered by the drug company. A 30-day supply cost me more than $300. And it didn’t stop the seizures. It didn’t really even slow them down. I’m now taking high doses of Keppra and Vimpat that are considered only marginally safe.

I experimented with splitting pills and stretching doses, but the ensuing seizures were so severe I felt like I was being electrocuted. What’s left unsaid in my conversations with neurologists and oncologists is the latent uncooperation of my brain tumor. It wasn’t clear two months ago that the first seizures were not good news, as I pointed out in an earlier post. But by now it seems clear that they’re bad.

“Frankly, it’s worse,” my oncologist said of my March 18 MRI. It appeared as if the lobed image of a geranium leaf had been burned onto a slice of my brain. It was far bigger than any of the interim growths of previous intervals of three months. I was shocked nearly speechless but felt obliged and somehow nearly qualified to draw his conclusions for him. “Some matter of months,” I said. Anything else he said was just noise to me: leftover hope; clinical trials elsewhere; end-stage treatments; hospice referrals. Then he shook my hand while turning away, with an odd smile-frown contorting his face, and left the room.

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From Pride
by U2

Early morning, April four
Shot rings out in the Memphis sky
Free at last, they took your life
They could not take your pride

Last September, I wrote about how my tumor appeared to have grown despite sincere efforts to change my attitude and my approach to health. I promised to update you on the events that have transpired since, events that led to the recovery described in “An Excellent Response,” but thus far have failed to deliver on that promise. I hope to correct that deficiency now.

In the days following that disappointing MRI of September, as our Earth was swung around the far side of the Sun, I wrote profusely, but privately, about experiencing desperation. I felt, again, the terrible weight of my prognosis. But unlike in June, I conceded to my girlfriend’s resolution to enlist alternative therapies. I visited an attunement therapist, an acupuncturist, a reflexologist, and a shaman.

Apparently I did not expect much from the acupuncture treatment, because I felt ridiculous listing “brain cancer, heart disease, and bad posture” as my three most important health issues. As I settled into my deck chair in a dimly lit room full of other pincushions, I didn’t expect much. I worried I smelled bad. I projected onto the young female acupuncturist a sense of bewilderment and disgust.

But then, remarkably, I relaxed. The music was soothing. I was breathing. I closed my eyes. Then I saw an image of an infant, a blue infant, floating in space. “Hmm,” I thought, and later walked out expecting nothing of it.

Then I had an appointment with a shaman, at her home in South Portland. It might have been the next day, or perhaps a few days later. I figured I would maximize the return on this dubious investment if I meditated before the appointment, as a way of putting my psychological house in order. During the meditation, the blue boy appeared again. This time he was joined by a white lump, which I identified as my brain tumor. The tumor had a flattened edge, and it lifted this edge and tried to wrap itself around the boy. It sounds terrifying, and I later noticed that the tumor appeared to have teeth. But I could sense, somehow, that the tumor was like a loyal dog: canine in physiology, friend in practice. I saw its face. I saw that it was trying to help. It didn’t know what to do, and I hadn’t bothered to train it. “Hmm,” I thought, and left for my appointment.

At the shaman’s house, I took a seat on the couch. I looked into her blue eyes, which, it seemed, were prepared to accept any hardship and turn it into light. I began to recount the events of previous days, but when I came to my vision of the tumor and the blue boy, I burst into tears. I suddenly understood the meaning of the vision. The tumor was trying to soothe a part of myself I had ignored for too long: the child I had abandoned; myself.

The shaman nodded and smiled. She said she had no doubt of my recovery. I left feeling lighter. I found that when I looked in the mirror, I could love the man I saw there. I wept for joy.

I submitted, in the next few weeks, to the course of radiation and chemotherapy treatments my doctors had recommended. I had wondered whether my transformed self-image might provide all the healing I needed, but I also knew from prior experience that I could endure these treatments and believe in their healing powers, to my own benefit.

I developed a habit of meditating in the evening, after dinner and before my nightly beer. The meditation had two parts. First, I imagined myself as the present version of a long series of selves spread out from birth, far behind me, to death, nearly as far ahead. Each night I would come to a doorway where I would look into the eyes of an essentially identical man, shake his hand, and then become him as my perspective changed to see the former (younger) me manning that station in the ever-receding past.

Secondly, I addressed the tumor. I thanked the tumor for being my advocate, for trying to heal wounds I had refused to acknowledge. I thanked it for making me aware of my mistake. Then I explained that it must now leave, because I have now taken responsibility for the boy, and because if it continued to grow it would kill both of us, which I would not allow to happen. I told it that I honored its service, and would remember its contribution to my life, but would not be responsible for accommodating it elsewhere.

I did this every night, for months. An MRI in early December showed that the tumor had not grown. That was the official verdict from my oncologist’s office. It looked to me as if it had shrunk somewhat as well as lost some of its “enhancement,” the glaring brightness that measures a tumor’s hunger for blood (or, more to the point, whether that hunger is being satisfied). I was, I thought, on the right track.

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Christmas came, and I thought of my mother. I thought of how angry I had been when she visited in October, her only visit of the year to Portland, and of how poorly my dismissive behavior matched the calm bearing of my meditations. She had lodged at my sister’s house, and I had suffered to visit her there with my son for an excruciating 15 minutes. Why was I so angry?

Later, I discovered in a pile of papers (left over from periodic sweeps of what had been my office at Quebec Street) two letters she had written during a time of growing estrangement between us. They highlighted her unmet desire to be closer to me and to my son, with whom, in fact, she has spent very little time. And then I called her on Christmas day, which for many years I had not bothered to do.

It felt good. It felt like I was doing the right thing, the responsible and adult thing. I did not even notice until after the call that she had not given me any Christmas presents this year, but considered it an improvement, a sort of release from the bindings of guilt which had both held and encumbered our relationship for far too long.

After the New Year, I climbed to the attic at Quebec Street (while my ex-wife and son were gone) and noticed the tiny telltale scat of mice concentrated on the now-deflated fabric of what had once been a small neck pillow. From what I remembered of its weight and feel, I guessed it once contained dry beans. Tricky mice, I mused: resourceful, thorough and probably desperate.

I continued musing on this theme in a blog post of early January titled “In the Attic.” It lit a fire in my confused and curious heart. I couldn’t stop writing about and wondering about my relationship with my mother. Then I began to view the writing process itself as a healing mission: the next step in a full and final reconciliation with my mother. But I quickly realized that many of the questions about what happened at the time when my mother left the family (as I was turning two years old) remained unanswered and even unasked.

I spoke with my mother and father several times (separately) and tried to sort their hazy memories and radically different, incompatible viewpoints. It seemed as if the universe had split, at that time, into two separate realities. At least, that seemed the only safe way to explain the sundering of our family with material resembling facts. I thought of myself as a journalist reporting on my own life, and proceeded to post updates on my blog with what felt like a natural innocence.

When my mother announced she was sending salmon and cod steaks, I naively took it as a peace offering, an appreciation for the sometimes harsh and sometimes relenting but (I thought) always well-meaning blog posts that were intended to burn up decades of misunderstanding and misdirection all with one match. Then it occurred to me that maybe she didn’t know I had written about her. What? People aren’t talking about my latest blog post… among themselves?

No, genius. They are not. I should have taken the posts down and tested the water, but instead I sent my mother an email that was an invitation, explanation and apology all in one. I nervously waited for a reply, comforting myself with the idea that a mother’s unconditional love for her son should excuse, even welcome, such honesty and introspection.

The response came in force. I had published angry lies, she wrote, in an email copied to my sister and half-sister. She forbid me from publishing what she had said or would say, threatening to end our relationship. “That was 38 years ago,” she wrote. “Look in the mirror.” I heard the hiss of venom dripping from her words.

I went to look in the bathroom mirror. My heart was racing. The man who had been reliably smiling back since that transformative visit with the shaman—the man who knew and loved the child inside—was gone. I was shocked to see my father’s face instead, the face of the man she left. She has occasionally cited, over the years, the fact that I was born on my father’s 25th birthday as a sign I belonged with him.

I replaced the offending post with an apology and explanation, allowing that it was not clear to the “participants” of the interviewing process that they would be contributing to a tiny slice of posterity. I called my mother to apologize, thinking it was appropriate to “man up” and say it out loud and to her directly. She accepted with sincere appreciation. But, as much as I wanted the feeling in my heart to fade at that point, it was only slightly relieved.

Why? Did I want her to apologize, too, for her strong reaction? Did I want her to reflect, at least, that such dialog can be constructive with cooperation? Yes, I did. But I didn’t ask her for it, and I don’t believe the thought crossed her mind.

I continued to write about it, seemingly daily, aching for resolution. I was resigned to believing that none of the material would be published on my blog any time soon. My emotions evolved. For a while I assumed a posture of rejection, imagining a time in her old age when I would shrug and turn away. Finally, on the last day of January, I felt determined to conclude “mother.rtf” with love and silently get on with my life:

I can do it on my own. I can do it for myself. Maybe that’s the most important lesson of all of the many lessons that have come out of this: I can do it on my own and I can do it for myself. Is it irony or something lighter and purer that now wraps her angry words in a loving gentleness. “Look in the mirror.” Yes, finally, that is the way to freedom, the way to peace: look in the mirror and see someone who loves you.

Within a few hours I suddenly collapsed to the floor, shaking uncontrollably in the buzz and blur of my first seizure, and thinking “my life will never be the same.”

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April 5, 2015

The Cockroach

There once was a king who reveled at his banquet table every night. But one evening, a cockroach scurried across the table.

“Kill it!” cried the king. A servant dutifully smashed the cockroach and dropped dead on the spot.

The next evening, a cockroach scurried across the table. “Kill it!” cried the king. A servant dutifully smashed the cockroach and dropped dead on the spot.

The next evening, these events were repeated. Soon, people of importance were whispering in the king’s ear about changing their approach to the cockroach problem. They tried all manner of things, but with great consistency the killing of a cockroach was followed immediately by the sudden and inexplicable death of the killer.

Next, they caught the cockroach and kept it in a tiny cage. The cockroach escaped. The keeper died. Left to scurry as he desired, the cockroach invariably occupied the king’s own plate and stared up at him with calm black eyes. The king abided this humiliation for only one meal before convening a panel of experts.

It was resolved that the cockroach should be led away from the castle with crumbs of cheese. The cockroach followed but, with uncanny skill, always foiled attempts to be trapped, diverted or otherwise impeded, and thus came back to the castle. Strangely, he never ate the cheese or, apparently, anything else.

At last, a faithful subject volunteered to lead the cockroach away continuously and permanently, to give the king more than a few days of freedom. The plan succeeded at first and the cockroach willingly followed and seemed to need no care or attention whatsoever.

But over time the man noticed that the cockroach was slowing growing, and all the while, its black eyes stared. Within a few weeks, it became immense: the size of a bear. Peasants fled before it in fear and misery. Finally, the man was driven mad and threw himself off a cliff. The cockroach immediately returned to its normal size and turned back toward the castle, seemingly invisible.

When the cockroach appeared again at the king’s table after several months of peace, the king pushed his plate away, wept bitterly, and resigned himself to the shame of sharing his plate with the disgusting creature.

Then a tiny voice was heard to say “I will go.” The king searched for the source of the voice and finally found, at the foot of his goblet, a tiny mouse. “I will go, Your Majesty,” the mouse said, and bowed.

The dazed and weary king began to laugh. His laughter was full of mockery and contempt for this unlikely hero. He laughed and laughed.

As the mouse led the cockroach from the castle, it was said that the mouse was so inconceivably small and frail that the cockroach might already be bigger. The king laughed and laughed, and ate freely.

The mouse tread cautiously through the night, with the cockroach at his heels. He crept ever further, from meal to meal, in shadows. He was ever under threat, though no beast would be satisfied by his paltry skin and bones. They would laugh and laugh.

For days and weeks and months they crept along, the tiny mouse and the black-eyed cockroach.  Could it have been years? At times, the mouse was thankful to have, in his uncertain life, something as steady and predictable as the cockroach. For, contrary to pattern, the cockroach did not grow nor change on this journey.

Finally, the mouse and the cockroach reached the shore of the great ocean. Irretrievably tired, the old mouse saw his journey at an end. He lay his head down on the flank of the cockroach, shed a single tear of joy, and smiled. They both died peacefully. No cockroach was ever seen again at the king’s table.

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April 8, 2015

I didn’t die that night, Jan. 31, but at one point it seemed almost likely. I had taken my laundry to my ex-wife’s house while she was out of town, and read a book as I waited on the couch. The book was titled Navigating by Heart and was supposed to “defuse negativity.” The aching in my heart had persisted and I was looking for a mindful, meditative way to soothe it, as if to sleep. I came to a chapter titled “Male and Female,” about balancing masculine and feminine forces in one’s life, and realized that I was nearly shivering.

The thermostat had been turned down to 55 and I had expected an extra fleece vest to keep me warm, but it wasn’t enough. I got up from the couch to fetch a blanket from a nearby chair. As I returned, swinging it overhead to wrap around my shoulders, I was struck with a strange buzzing confusion, in all of my senses, so suddenly, that I was unable even to register fear before losing consciousness. When I opened my eyes, I realized I had collapsed to the floor, probably only moments before. I was shaking, but couldn’t control my body or focus my eyes. I was trapped inside and wondered if I might be dying.

Gradually, my abdominal muscles began to engage and I was able to sit up. I assessed myself desperately: what’s working, what’s not? I found that my right arm was lifeless. I couldn’t move it or even feel it. I squeezed it and shook it with my left hand until I could start to feel it again. It took a few more minutes to recover enough to get back to the couch, then a few more minutes to stand.

I was frightened and confused, but since no one had witnessed the event, I was able to assure myself, with undue confidence, that I was recovering from an isolated event. I changed out my laundry, waited for it finish, and hauled it home on foot, a few blocks, stumbling all the way.

I seemed to recover fully within an hour. I didn’t bother to think about it or mention it to anyone. I drove to the gym the next day, then drove through falling snow the day after. Perhaps this odd incident was solely caused by being unusually cold, I reasoned.

Then on Feb. 3, at the gym again, I followed 40 minutes of cardio with leisurely stretching, and it happened again. I noticed feeling chilled, as well as very relaxed, as I stood to fetch the mop and spray bottle to clean the mat I had used. I grabbed the mop and spray bottle but, as before, didn’t make it back to where I’d started.

I woke up on the floor and realized with horror that I’d suffered another of these “events.” I was horrified by the idea that this was happening in public. “He’s having a seizure,” a woman’s voice announced. I wanted to say, “Yes, I suppose I’m ready to admit now that I did,” but I seemed to be stuck inside again.

I struggled to unlock my limbs and managed to sit up within a minute or two. The gym’s stretching area had cleared out and a couple of gym employees, along with a well-meaning pre-med, were down on the floor with me. I managed to sit myself on a bench and then stand, but the ambulance had just arrived and I shook my head in shame and despair as I realized I was going to be herded into it.

Already cold, I shivered desperately in the back of the ambulance as the freezing night air rushed in. Blankets were an afterthought to a crew not trained in human comforts. My girlfriend appeared at the side door and announced she would take the car and meet me at the hospital. My bed-on-wheels was driven through the basement doors at Maine Medical Center, then a triage station, and finally into the darkness of a room in the emergency department: all as if I was a car at a car wash.

I was later admitted. Young doctors came and went. Around midnight, at a time of stillness and relief, I sat up in my bed, crossed my legs, and meditated. Again I asked my suffering heart to calm down.

The doctors filed in again the next day: some curious with questions, most confident with answers, and at least one who seemed sure of wasting her time. I had been diagnosed with syncope, more often known as “fainting,” they announced. Freshly scrutinized streams of data showed that my heart rate had dropped to 40 beats per minute… at around midnight.

Their answer was to drop metoprolol (one of the medications my cardiologist had ordered for me when I was diagnosed with heart disease) from my medication list. It had the effect of slowing the heart rate, they said.

When my girlfriend returned to pick me up in the morning, I celebrated the feeling of putting it all behind me: all the doubt; all the fear. Thinking that a medication I didn’t even need had caused a couple of brief inconveniences (that would soon become footnotes in my life) almost led me to laugh. Did I know then, in my heart, that I would not be released from doubt and fear so easily?

I acted as if I did not. I hiked to East End beach in the bitter cold, through drifting snow, beyond the tide-lapped crust, over wet sand, to the water’s edge, and wept with joy.

On Friday, February 6, feeling free of the shameful uncontrol of those ever-receding days, I ventured out again into the frigid night air. I needed exercise, but, having been ordered not to drive, I couldn’t get it at the gym, so I took my snow shovel to my ex-wife’s house, which now desperately needed a clean-up. For seven years it had been my own home, castle, redoubt, etc., and now, for two years, it had not. I dug into the deep snow with a greed for life and soon felt the fire of exercise burning within.

I dug for a couple of hours, clearing the walks and then driving what had once been my car onto the street so that I could clean out the driveway. By the time I was done, the property appeared again as if someone lived there and cared for it. I can’t remember now whether I had seen her since she announced in late January, by text message, that …

I also didn’t notice that my body had cooled significantly since the hard work of shoveling heavy loads had turned into the softer work of scraping and trimming edges.

Satisfied with my work, I raised the shovel to spear it into a snow bank (after which I would lock up and leave). And… Cut.

I woke up on the ground again, on my back. A deep frustration and disappointment was tempered by an odd feeling of calmness, of exercise overtaken by deep relaxation. I found that my eyes were able to focus, which was an improvement. My ears did not ring and my body didn’t shake all over. Instead, my right foot kicked as if I wanted to kick my loosely fastened boot off of my foot.

As before, my right arm was dead and lifeless. I looked up and down the street. It seemed that with the aid of tall snow banks, I had not been noticed, and that was a relief. I shook my dead right arm back to life again and picked myself up, anxious now to get home. But the car was still parked on the street. Snow-related parking restrictions were almost continuous at that time of the winter and I was determined to return the car to the driveway.

I tried backing in, as is my custom in all seasons, but the street was uncommonly narrow, being hemmed in by the snow, and I had opened only a meager entrance to the driveway. My angle of approach was off, repeatedly, and I was blocking traffic and becoming frustrated. I wasn’t supposed to be driving anyway. My head was swimming. I plowed into a snow bank and briefly, in a panic, doubted I could distinguish gas from brake.

When I managed to brake safely at the side of the street, about 50 yards away, I carefully shifted into park, left the car running and hobbled to a neighbor’s house. They invited me into their third-floor apartment and, upon seeing the difference between what I asked for (“can you park my car?”) and what my unbalanced condition advised, promptly dialed 911.

Thus I was taken to the hospital in an ambulance for the second time that week. But for the first time that week, with luck and thankfully, a doctor listened to my story with a sense that didn’t drip with certainty. I could see her gathering thoughts. She reasoned out loud. She weighted her steps as if on ice and said finally “I think you’re having seizures, and I think you need an MRI.” (The fresh-faced confidence of the pre-med from the gym seemed finally to have been vindicated).

Knowing from personal experience how expensive MRIs are, how committed doctors are to denying them to healthy people, and how lucky sick people are sometimes to get them, I sighed with relief. Whatever it was that had struck me down like lightning every three days for the last week, it would soon make more sense. Even if it didn’t reveal an obvious cause for seizures, it would (I hoped) at least show that my meditation work had continued to shrink my tumors.

I almost wondered if (by a trick of what the mind can do to the body) I had wanted these seizures so that I could get the MRI in order to prove that the tumor was shrinking and demonstrate, conclusively, the power of my will to heal.

My bed was wheeled from the ER to the MRI at around 1:30 a.m. The technician had been called in from her own bed (at her own home) to perform the procedure. Later that morning, perhaps nearing sunrise, a doctor arrived and tried to explain the results, but seemed to be trying to explain them mostly to himself. He summarized the conclusion of the radiology report: “it doesn’t appear to be any worse than last time.”

I called my step-mother for a ride, instead of my weary girlfriend who (I thought) needed a night off from being the light of my life. She didn’t know I was in the hospital and I realized that it would only make it harder for her to live her own troubled life if she did.

Thus Feb. 7, 2015 was a reenactment of those troubled morning hours of May 5, 2011, when my brain tumor was discovered. Now, as then, I wanted simply to curl up in bed and go to sleep. I was to turn 40 in two days.

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April 10, 2015

It didn’t seem right that the plastic bracelets I wore in the hospital that week had continued to identify me as “39 Y. O.” because the last vestige of youth it conferred was shed or stripped away long ago. The edge of old age sliced through me. But instead of dreading 40, I was anxious to get to there. A relatively early blog post, from my first post-diagnosis summer, crudely charted 40 as the outer edge of my life.

So, while it was a triumph, it illuminated the thread staying the guillotine’s blade as ever so thin. To claim for myself this temporal climax of life’s usual arc would lean heavily on a miracle. And then there were the terrifying, unexplained seizures.

There are meds for those, right? My fortieth birthday would have brought my fourth seizure if the pattern of having them every three days was to hold. But it came and (to my relief) went without incident. I met with a neurologist on the 10th. That was when the first three seizures were diagnosed as complex partial seizures. I started the meds (a typical 500 mg dose of Keppra twice per day) and prepared to get on with my life. The week of seizures began to recede.

But I couldn’t help feeling that something was wrong. In my nightly meditations, the lion (one of three “power animals” the shaman and I had identified months earlier) appeared tired and sick, tinged with a creeping mange and rolled over miserably on his flank, as the weak sun was swallowed by the western hills. I didn’t think there was anything I could do for him. I had my own problems. I lost the insight and stability that regular meditation provides.

His problems were my problems, of course. I couldn’t get my life back. The winter of my soul was now truly upon me, and I was ever bundled against a physical cold that conceded no relief, outdoors or in. I fought it with a dull petulance, with a contempt that mocked the ice and then feared it. I wrote my will: a few simple lines; as weak as my intentions. My father and sister signed it.

Then my girlfriend announced that she was moving in with me. During the frustrating process of shuttling some of my unused stuff out of the apartment and most of her stuff in, I suffered two more seizures, thereby shattering (at least temporarily) the promise of the seizure meds. The upside, if any, was that the seizures were somewhat less intense and that I saw a pattern in them.

The first happened this way: I hadn’t been able to slide the driver’s seat of her two-door forward, nor hinge it, and so stretched precariously into the back seat, with my two feet in the street. I reached with my right arm to grab the rear backrest, looking for a way to pull it down and gain some trunk space. And… Cut.

I regained consciousness as my back was slowly declining toward the street, which surprised me because I had been leaning forward in the car. I saw a man close his own car door, across the street, and turn my way. That’s when I discovered I could talk during seizures (or, at least, during this one).

“Oh, my God!” he exclaimed, rushing to my side.

“I’m okay, I’m okay, I’m okay,” I hurried to respond, somewhat inarticulately but still effectively. (No more $300 ambulance rides, I thought). He helped me get to my feet and I explained that I had had a seizure.

“I have a friend with epilepsy,” he said, and then, after checking again to make sure I didn’t need immediate assistance, walked into the restaurant.

The freak show continued as late-lunch diners did not bother to hide their interest in the man (me) flailing his dead arm on the fender of his girlfriend’s car and then limping off down the street.

The second followed the next day: I was carrying books (those cumulatively heavy and outmoded devices that I almost never use, even if I’m fond of them for some sentimental reason) up to the attic of my ex-wife’s house while she was away (again). The growing pile was behind an impromptu closet rod, so I had to push dresses out of the way with my right arm. Cut, again. This time, I discovered I could move and control my left arm during the seizure.

Reflecting on all five of my seizures, I confirmed some old suspicions and rejected a few others. A cold environment might have been a contributor but, judging from the hot attic where I had been sweating at the time, certainly not a requirement. I was wearing a heart monitor, and later analysis of the data showed my heart rate during the incident was on the high side of normal. Use of the arms, and particularly the right arm, was common to all five of the seizures. The way I landed on my back, even while leaning forward, was also a clue, along with the persistent soreness of my right shoulder.

I bottomed out. Nothing a doctor had done had worked, over the last month. Was it desperation, or something like the opposite of desperation, that led me to write in a Feb. 24 blog post of encountering “that uplifting, radiant energy which sings like a chorus of angels.” Whatever it was, it was spurred by a crisis of identity. “The lion in me” was “proud” but “vain,” and foolishly clever, I wrote.

Yet more and more often, recently, I feel that such cleverness gives me only one leg to stand on. It lacks “heart.” 

Heart, it seemed, came from feeling connected to an energy that some might call God. In the course of feeling powerless to control my body, that energy sustained me spiritually in a life-changing way. I shed “tears of awe.” I thought I understood, for the first time, but intimately, the meaning of being “borne along” by this divine power. Maybe it’s similar to being “born again in Christ.” What I didn’t ask myself, what I should have asked myself, is “what is the cost of being carried?”

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April 11, 2015

At around the same time, I received an email from my “secret source” of neuro-oncological knowledge, a sort of a friend of a friend of a friend living far away, who happens to be remarkably well qualified, professionally, to interpret MRIs of the brain. His assessment of the Feb. 7 images was that my brain tumor had “vanished.”

It was “a lift in a dark time,” I responded, and it led to the sardonically celebratory mood of my March 1 post. But my own oncologist never did discuss the radiologist’s findings with me, scheduling me instead to see the nurse practitioner for several visits in a row. I started to get the feeling, as February and March wore on, that he didn’t want to discuss them. A follow-up MRI was scheduled for March 18. If the seizures continued to resist treatment, it should be evident then that a renewed tumor was their cause, I reasoned.

But as of March 2, I still felt that the doubling of my twice-daily Keppra dose on Feb. 24 was successful. I hadn’t suffered a seizure in more than a week. On the theme of “getting on with my life,” I prepared to re-emerge into public life with an outing to Planet Fitness. I desperately needed regular exercise (and hadn’t been without it for more than a few days in over two years), but worried about what would happen if I suffered a seizure there again. (Like I said, no more $300 ambulance rides!)

To soothe my fears, I drafted a warning pamphlet titled “I HAVE EPILEPSY,” which included a picture of myself (from happier times) and a description of a likely seizure scenario, plus a list of medications and sincere pleas to be allowed to recover naturally without a trip to the hospital. As I was about to print it, I felt a pinch in my right shoulder and one last cut and abruptly fell off my desk chair.

My girlfriend propped me up immediately, with natural tenderness, as I struggled to regain my limbs. And that, apparently, was my sixth and final “complex partial” seizure. It was fitting that it occurred while I was trying desperately to ward off, with my irreproachable explanations, the fear and misunderstanding that I expected to find in anyone who might witness one of my seizures. The seizure itself embodied the fear of having a seizure.

I didn’t return to Planet Fitness for weeks. By that time, my seizures had evolved and my “I HAVE EPILEPSY” pamphlet had evolved with them. My seizures became somewhat more predictable and easier to handle, but the fear of having them grew only more intense.

My girlfriend and I entered the gym as it was clearing out on a Friday night. I presented my pamphlet to the burly young man at the desk and summarized it with an easy articulation. But when, after scanning it, he addressed only her, I realized that by labeling myself as an epileptic I had yoked myself as a special case. I had special needs. He said he would have to call the manager.

We got the okay, and got treadmills side-by-side at the end of a row, and I got the kind of work-out I needed. When I suffered a seizure with only a few minutes left on my clock, my girlfriend was there to tend to my safety. I was delighted to find that no one else appeared to have noticed. But I couldn’t help wondering, as we left, whether the man behind the counter had been watching me the whole time on closed-circuit video, and, if so, what any of us might have gained from that.

Or was I watching myself, in my own mind, and seeing myself with disgust?

I haven’t been back.

---

April 14, 2015

Fear. The fear of fear. Creeping, menacing, paralyzing fear. The month of March was a month of fear.

Just as no amount of explanation or preparation could save me from the fear of having a seizure at Planet Fitness, no amount of tests or drugs could save me from the fear of continuing to have seizures every day. And that fear was, and has been, nearly continuously realized, to the present day. Thus it is fair to ask, though horrifying to consider, whether the seizures caused the fear or the fear caused the seizures.

I wrote on Feb. 24 “When I’m writing, I feel safe.” But after deducing that my right shoulder was the most likely seizure trigger, I submitted readily to its total immobilization, and nearly ceased all forms of writing. As my seizure count began to accelerate, I buried my head in the pillows. My right arm continued to lose strength and coordination on a daily basis.

My girlfriend, now temporarily my housemate, tended to me.

I confined myself to bed from Friday afternoon, March 6 to Monday morning, March 9, wearing a portable seizure monitor. Only a few days earlier I had felt capable of moving the remainder of my girlfriend’s furniture into storage. But a delay of only a few days rendered it unthinkable.

Every morning, the process of waking up to my body began anew. I unwisely restrained my seizures by laying on my right arm, which left it feeling numb and stiff. Soon, I was unable to sleep comfortably on my right side.

I wrote on March 8:

These are slow words. Stumbling words culled from wayward keystrokes.

My right hand aches, my right arm aches. I’ve already had three seizures today.

A bundled tail of wires joins a bonnet of electrodes to an array of terminals that is then plugged into an electronic device that records my seizures. When I have a seizure, I press a button on the device and it beeps and lights up for a moment, and hopefully when read properly will tell me when and how I can get on with my life.

“This too is life.” It’s hard to lift my heart up now to God and say thank you, for “this too.” Yet I do not know how He works, and suffered another seizure just trying to write this sentence.

The sinister infiltration of weakness and fear was rapid and relentless. When data from the device was finally uploaded at the neurology office, I was naively pleased to have registered a dozen seizures over the weekend. The technician pointed out the high-amplitude waves that indicated one of them. It was like a signature of need, just as the white blotch of May 5, 2011 was an image of unmistakable importance. But, this time, there was nothing in it that identified a sure course of action. It was only cautiously suggested from afar by messages from the busy neurologist’s assistants.

(“The seizure meds haven’t been working. You need more of them,” is what the neurologist seemed to say, over and over again as the dose was increased from 500 to 1,000 to 1,500 to 2,000 milligrams. Then Vimpat was added, at a price that should buy me lunch and dinner, too. It proved an empty promise. Now a giant bottle of another seizure med called “oxcarbazepine” waits on my bureau.)

I had fallen far. Retreating to bed, now sans bonnet, I was haunted by a sense of accelerating illness. While at first I was sure that my seizures were caused by a particular motion in my right shoulder, now even total stillness could not prevent them. I wanted to go to the hospital. My wish was fulfilled on the morning of March 12 when I was admitted to Maine Medical Center’s creepy sixth-floor neuro wing for overnight monitoring. My new bonnet of electrodes was now tethered to the wall and a camera was trained on my bed.

I gave them a seizure within the first few hours. Then, in the afternoon, my girlfriend called me. Her name had come to the top of the list at the apartment complex where she wanted a one-bedroom. She could move in on April 1. At first, I feared that I would lose her support as confidant and nurse. But I surprised myself by encouraging her enthusiastically to take the apartment. Was I playing the martyr? Steeling myself for the rigor of recovery? Or did I, as I increasingly suspected, want to live separately as we had done for two years before? I was feeling squeezed.

Then she surprised me by announcing she would decline the apartment and continue to stay with me. She explained her reasons, but I couldn’t bear to listen any more. The video of my subsequent seizure shows me writhing nervously in the hospital bed and then wrestling with myself as my elbow curled involuntarily. My girlfriend was undaunted by a breathless “I’m having a seizure” and stayed on the line until I recovered, which was the opposite of relief, I thought.

Neurologist #2 seemed to fetch the relevant video with ease from the mountain of data I was creating in my confinement. She also appeared to genuinely care about my apparent suffering, at least the medical aspect of it. She was the one who comforted me with a sure and gentle tone in announcing “the goal is ‘no seizures.’” That goal was supposed to be accomplished by a drug called Vimpat, the first dose of which was administered in late afternoon by IV.

But at around 6:30, as I waiting for the uncommon pleasure of seeing a Bruins game on TV, and feeling secure in my body for the first time in weeks, out of nowhere came a mild seizure. With disappointment, I pressed the “I just had a seizure” button yet again. The Bruins later won in exciting fashion, but there was no way to explain the seizure other than a failure of the medicine.

I had another seizure the next afternoon. The doctor was reluctant to discharge me from the hospital. “I need to get out of here,” I said, only a few days after saying to myself, at home, in the middle of the night, gripped by fear, that I needed to get in there.

---

April 16, 2015

The event that unleashed the fear, and also sanctified it, happened at Kinko’s on Monument Square, March 3, the day after my last complex partial seizure.

I was determined to get out of the house and get stuff done. And stuff needed to get done. After a needless delay of two years, I had finally prepared the paperwork for removing my ex-wife’s name from an investment account we had owned together. I planned to make copies and then mail the original, which had required various signatures.

I walked downtown, about a mile, and entered Kinko’s. Whatever fear I held, I didn’t acknowledge it. I certainly didn’t consider it as I lifted the cover of the photocopier. In retrospect, it seems foolish to have lifted my right arm above shoulder height. Hadn’t I figured out that my right shoulder was a focal point of trouble?

I seized. Through the breathless terror of feeling my arm lock up, I realized that I was still standing. I had not lost consciousness. My right leg turned to jelly, but by holding on to an edge of the copier with my left arm, my left leg was enough to keep me upright. Incredibly, though the scene was noticeable, the woman at the adjacent copier appeared to be dutifully minding her own business.

When the seizure subsided, I wasn’t sure what to do. I was relieved that no one was fussing over me, but I was confused about how to make my copies. Seizures didn’t disable my mind, but my faculties were somewhat stunned. Did I want help? Did I need help?

The woman on my right continued dutifully ignoring me (in the virtuous way of people who mind their own business), but a woman on my left appeared to be wearing a cautiously concerned look as she browsed office products.

An employee brought a chair for me, saying softly something like “my brother has epilepsy.” I surrendered to his help and he handled the machine, and then loaded my backpack with the copies. “Take your time,” he said, and then returned to the counter. I sat for a minute, awed not only by my helplessness but by its new nature, which suddenly allowed me to lean on people.

A woman offered her assistance. “Can you help me put my backpack on?,” I asked. She did so. I thought I recognized her from earlier. Wasn’t she the stylish and attractive young woman who had passed ahead of me on the sidewalk, giving a wide berth to my wayward limp?

So, I had a seizure at Kinko’s and the world did not end. I could walk home, slowly. But I still needed to mail the documents. The post office was on the way, and by the time I got there I had gathered enough courage to go in and get it done. A sense of confusion and fragility remained, however, and anxiety welled up in me as I entered.

It was nearly empty and a station was open: the one with the grumpy clerk. Time after time he had demonstrated his impatience with unprepared, ignorant or leisurely customers. I felt that I had no choice. Then I remembered that I couldn’t write clearly with my right hand after a seizure. I hadn’t prepared an envelope, only written the address on a slip of paper, planning to buy one and address it there.

I didn’t know what to tell him, so I told him the truth: I just had a seizure and can’t write. Could he do it for me? I suppose it was the right combination of desperation, a nearly empty post office and perhaps an uncle with epilepsy that pushed him to do something he might not otherwise be willing to do. His face said he could hardly believe it himself. It relaxed for a moment, and then an altruism crept in and focused it and energized it.

“Are you sure you’re okay?,” he asked, returning the empty folder to my backpack, zipping it up and handing it back to me.

“I’ll just sit on this bench over here for a minute or two,” I said.

“Yeah, take your time,” he said. “You’re sure you’re alright?” His voice had regained a little bit of its frantic edge, but still registered concern.

I nodded and limped off after a minute, climbing the icy hill in a sloppy but increasingly relaxed fashion. My fear—the fear of losing control—had been transformed into something I could give: an opportunity to help a person in need. For most of my life the very definition of adulthood had excluded such dependence. Now it was somehow holy.

---

April 18, 2015

“Be the light.”

I don’t have a priest, minister, rabbi, guru or any other regular spiritual advisor. But after coming home from the hospital March 13 with what appeared to be intractable epilepsy (incurable, in other words), I yearned for the guidance and comfort one of these might be expected to provide.

The closest I felt I could get was a man I’d never met. I had spoken with him on the phone a couple of times and then read his book, which is ostensibly about the healing art of “attunement” but, based on my frame of mind at the time, seemed to address the subject of “life” with uncommon depth.

“I am having a healing crisis right now,” I wrote to him in an email, shortly after returning from the hospital. He called me the next day, and I sobbed profusely as I listed the lessons “life” had taught me recently, including the meaningful Kinko’s episode. In fact, my tearful monologue constituted nearly all of what was said.

“Be the light,” he replied. In retrospect, it seems that mirroring my words in conclusion was the humane thing to do, the gentle and peaceful thing to do. I felt not only protected but also ennobled by this sponsorship of my suffering.

It was also the last day since March 1 (and perhaps the last of my life, though I hope not) in which I did not have a seizure.

I continued in the following days to fulfill the odd obligations of “being the light,” as I defined them: not only allowing people to help me but celebrating (with moist eyes) the human connections that were made in doing so. An older woman hobbling down the street with a ski pole seemed touched to be able to help me up after I suffered a seizure on a Congress Street sidewalk. It led me to wonder whether some part of me noticed her coming up behind me and somehow accepted or even offered this seizure as a sacrifice “to the light.”

I addressed people on the street with a hearty but dewy “good afternoon” as I shuffled down the street with a cane. The basis of this practice (which, again, is contrary to a prevailing Yankee restraint) was the idea that by demonstrating courage in lowliness I would lift people’s hearts and remind them of how much they care for each other, in general. I styled myself the antidote to selfishness.

This idea reached its zenith on Sunday, March 15, when, after breakfast, I swallowed my morning meds and headed downtown for a walk, cane in hand. It might have been a formula for a fine morning, but I had eaten hours earlier (closer to 3 a.m.) and didn’t consider that I was taking my medicine on an empty stomach. I was very soon introduced to the known side effects of Vimpat (double-vision, balance problems and slurred speech) but continued down the hill with a missionary zeal.

“Good day to you,” I warbled to passersby. I typically generated some sort of surprised and confused gesture of reply, sometimes a “to you as well” and just as often absolutely nothing. I was a litmus test of community cohesion. I actually intended to go to the gym (my sneakers and a water bottle were in my backpack, along with one of those “I HAVE EPILEPSY” flyers I mentioned earlier) but only made it as far as the bus stop in front of of City Hall.

It was fitting that the City Hall plaza was deserted and Congress Street nearly so, under a cold grey sky, and that the only other person at the bus stop didn’t seem to speak English, but merely nodded dubiously at my greeting, and that I suffered a seizure then that no one seemed to notice and that as I trudged home from there I realized I had missed the turn-off for the gym anyway.

I recovered well enough from the side effects, climbing Munjoy Hill, that when a young man saw me entering the street and offered his assistance, I was able to decline articulately. He was just going into the restaurant, behind a man who seemed eager not to see me at all.

“No, thank you. My apartment is right across the street,” I replied and smiled. He gets it, I thought. He has someone in his life who has shown him the value of patience and charity, such as a grandmother. But I’m nobody’s grandmother. In fact, my own grandmother is still alive in a nursing home across town. Perhaps if I could drive I would visit her more often. And perhaps not. Wishful thinking renders patience and charity easily achieved.

---

April 22, 2014

The next step in my medically indicated and prudent (and time-efficient, but ultimately futile) collaboration with the neurology practice was to cease treatment with antidepressants for the first time in ten years. Sure, no problem, I conceded desperately.

They scheduled a gradual “titration” of the Bupropion (brand-named Wellbutrin) from my current dose down to nothing over a period of weeks. I ignored it and quit after only a day or two at the reduced dose. For years, Bupropion had provided a satisfying freedom from emotion. Now that it was clearly not doing that any more, what would I miss about it?

I was experiencing so many changes, so rapidly, and still losing ground to my epilepsy, that I felt prepared (or forced) to let go of just about anything in order to settle myself in a stable position. The position I settled in was “powerlessness.” In concert with the “awe” I experienced in viewing the world from a “lowly” vantage, the process of being swept away by the irresistible force of God presented a terribly alluring alternative to fighting the mysterious foe in my own body.

But still I feared and hated seizures, as much as I tried to put a brave and meaningful face on them. I knew that I would have to go outside and face the world again if I wished to recover. I seized a thousand times in my imagination, frightening small children and disgusting everyone else, including myself. Many times I seized preparing to go outside: a seizure-in-advance with the dubious benefit of restarting the countdown to the next seizure, which in the most active parts of day promised to give me 90 minutes for fresh-air walks.

One route in particular proved private enough to place the risk of seizures under reasonable control. After a half-hour of dodging dirty snow banks and newly exposed dogshit, I joined the shore path heading for the sewage treatment plant, then climbed a trail through the woods and emerged at a relatively lonely stretch of the Eastern Promenade. On a couple of occasions, the stress of climbing the icy trail led to seizures. Another time, my 90-minute clock dinged sooner and I crumpled to the ground by the treatment plant.

I had just issued one of my intrepid good-mornings, which a young female jogger had studiously ignored. When the next group offered assistance, the politeness of my reply sounded a little thin. Then I grumbled “It’s nothing that hasn’t happened before.”

About 45 minutes later, I greeted a young man sitting on a park bench and earned a very similar you do not exist. Only moments later and a few blocks from home, I was surprised to feel the familiar warnings of a seizure and reluctantly laid myself down. In full view of many, I performed unwillingly that bizarre and profane dance of the epileptic. My right arm again curled up and the fingers of my right hand seemed more intent on violence than any fingers have ever been which did not have the cooperation of the hand or each other.

As I was struggling on the sidewalk, the same young man walked by me, and almost over me, with no acknowledgement whatsoever. I did not exist in his world. An older man appeared and invited me to recover on a nearby step (which I did), then promptly disappeared without further words. A young couple in a modest car seemed to have pulled over in an attempt to gauge whether my episode was as close to an emergency as it initially appeared. They’re still gaping, as far as I know.

The incident set a new record for the brevity of inter-seizure respites. It also jelled a new kind of personal fear in the form of mistrust. I began to believe that others’ fear of my unwholeness and strangeness (as expressed in my ragged gait and unnaturally forward disposition) could actually cause seizures. While it’s fair to ask which of the reactions I would least abide, between the ignorer and the gapers, I projected onto the ignorer a power to strike me down with an unkind thought. Did I feel his naive, jackal eyes boring into my back? Is the suggestion that I struck myself down any more or less palatable?

I could not imagine a new dimension to what already seemed a deep well of fear. Against my better judgment, I became convinced that I felt not only my own fear but others’ fear as well, even if they weren’t aware of feeling it. I soaked up fear like a sponge. It was a special curse; an abortion of the subtle energies trying to take root in my soul. Again I was touched by the idea of being “called by God,” but now heard behind the calling a sinister voice. It was quite possible that a battle between good and evil was being fought in my soul, I thought.

My collapse into paranoia continued for weeks. I wanted to “be the light” but suddenly couldn’t hide from the darkness in my own mind. I began to interpret any interest in myself by others, even positive and casual interest, as an intrusion; an unwitting theft. I suffered many of my seizures as my girlfriend entered my bedroom, or when my ex-wife called, or later (under different circumstances), as my father or step-mother came home.

At no time was this paranoia more acute than during a March 21 trip to the supermarket. My girlfriend had planned to go alone, but I asked her to drop me off on the way. I hadn’t seen my house keys for a few days and thought I knew where I could find them: in the woods along the icy trail where I had struggled with a seizure. I reasoned they must have dropped out of my coat pocket while I was lying on my back.

She decided to park and join my search, which proved fruitless and only frustrated me. Then, as we climbed back into the car, she asked me to continue with her to the supermarket. My fear of public places had not diminished, but my frustration lent me a self-contempt which stood in for courage, so I conceded. My heart was thumping with a desperately concealed panic as we entered the busy supermarket.

She tried to split her shopping list with me, but I was stuck to her side. She polled my preferences often, but I could only cough “That’s fine, that’s fine.” Many couples were sharing this simple weekly shopping chore with a lazy grace. We, too, had never doubted its ease until a few months ago; until with a jolt and a haze and a crash and a weakness like death-in-life, my known life had come apart on the night of the thirty-first of January.

I recall that during my time on “the bus” of the Audubon Expedition Institute, when I was 17 years old, one of my classmates suffered a seizure in a supermarket, somewhere downeast. Wide-eyed clerks spoke ignorantly of a heart attack. The ambulance came. I watched it or ignored it at my leisure with the detached boredom of someone who need not be afflicted. He was a good kid, of course: cooperative by necessity. He was nullified, of course, from those higher conceits that require a dose of selfishness.

Then there I was, decades later, with (to my detriment) a good deal more imaginative caution and a great deal less blind courage, swimming in a sea of that ignorance. Yet even my 17-year-old self would lend a bit of ignorant-but-sympathetic heart to my 40-year-old self if faced with it directly, no? I was fortunate I no longer needed the pre-med to explain my situation. My girlfriend could explain it for me and I could explain it for myself. Again, it was the ambulance that terrified me. I was afraid of losing the voice of my will. I was afraid of being shackled to the wall again. Everyone would see but no one would understand.

At last we arrived at the register. All of things I had been doing to push the fear away by force caught up to me at the back of the line. The check-out lane seemed constrictive, so I waited behind the cashier. I harbored a theory at that time that a mysterious “failure to breathe” had caused many of my seizures, and my attempt to compensate led me to hyperventilate. I imagined that it served as a protective measure, but in fact I was no longer able to hide the fact that I was having what would later be called (unofficially, but sensibly) a panic attack.

My chest was heaving. I was constantly turning to watch the checkout process crawling along, to watch the cashier express his worry and dismay at my curious scene, to watch the area of empty floor I would have to dive into if a seizure did happen, and to watch the incredulous reactions of other shoppers in the line, who seemed to question how I would finally be released from this self-made quandary.

As my girlfriend was preparing to bag and pay for our items (which was something I felt completely incapable of helping with), a young man who had been in line behind us (apparently with his own girlfriend) extended a hand to introduce himself.

“My name is Skyler,” he said softly. “Can I help you get outside?”

It illustrated the dilemma I appeared to be stuck in: wanting very much to leave but not knowing how. It so happened that just as he was grasping my upper left arm gently and leading me out, my girlfriend was released from her transaction with her grocery bags.

“Can you tell me what’s going on?” he asked.

Tears welled up in my eyes as I replied, voice suddenly quavering, “I was just afraid of having a seizure.”

“I’m with her anyway,” I indicated as we neared the door. I never looked directly into his face, so I don’t know whether his features reflected more exasperation than charity, or perhaps a public interest in decorum.

He turned to go and I touched his arm to say thank you and to sanctify that place of lowliness where he had found me. I sobbed all the way to the car, trailing my embarrassed girlfriend by ten yards. I sobbed for my helplessness all the way home, then sobbed through the dinner she made for me. It seemed the only way to feel safe, the only way to reach that place of powerlessness in which one is fully supported; by having nothing left to hide, nothing left to say, and nothing left to lose.

---

April 24, 2015

The timing of my Jan. 31 “episode,” which turned out to be my first of many seizures, was meaningful, I believe. As I recalled above, I capped the last day of a month full of writing about my mother by forgiving her angry response to my earlier blog posts:

Is it irony or something lighter and purer that now wraps her angry words in a loving gentleness. “Look in the mirror.” 

The seizure occurred only a couple of hours later. What was my body trying to tell me? I wanted to believe I did the right thing by accepting her response with love and forbearance. There could be no question of changing her, I thought. She is the way she is.

Further evidence of this arrived with a casual email inviting me to follow the ongoing process of publicizing her new book. I replied with the requisite congratulations and encouragements. Was she coming to visit soon?

She had planned a visit for the upcoming weekend, she wrote, but postponed it in order to promote her book at a local event. I asked myself: How do I feel about this? How should I feel about this? Does she know about my recent health problems? Why hadn’t I told her? Is it because I was afraid I wouldn’t get the motherly affection I wanted?

I refused to confront her with my own needs. The fear of her rejection had cut deep into my psyche ever since our parting 38 years ago, and I still, for whatever reason, shrank from the power of it.

It seemed that the least dangerous way for me to express my desire for a change in our relationship was to pour on the love. Her new book was “comprehensive, colorful and very approachable,” I wrote. Then I gushed about her near-divinity in this email:

March 16, 2015

Dear Mother, I love you.

I love you because you are a child of God, of Goddess and of All That Is, as every human is.

I love you because you are a human being. I love you unconditionally and eternally.

I love you because you are a daughter of Eve, and the mother of all, and my own mother, and also my sister and my daughter and my wife and my neighbor, as well as my father and my brother and my son and my husband.

I love you because you are a child of Christ, a spark of his divine grace, which will never be extinguished or forsaken.

I applaud your accomplishments. I love you because you are a human being.

From the day you were born, you deserved a grace and a power and a gift so much greater than this world can give you, or can give anyone. It is a gift that can never be forsaken or exhausted or refused, and that is God’s love, reflected in the love and forgiveness of yourself. Look in the mirror and love what you see, wholly and unconditionally, for as you have made it, so God has made it with you, to be cherished and forgiven for what has been, to be seen and loved for what is, and to be encouraged and celebrated for what is to come.

I lift up my heart to you, my mother. I lift up my heart to you, and to God, and sing.

I bestowed upon her, in this one epically naive stroke, a mammoth scope of powers. But by some accident or instinct, I had stumbled upon the way in which she could not abide being loved: unconditionally.

Being loved unconditionally would seem to give her great power. She would be forgiven for anything; past, present or future. But it’s exactly because she would never be loved any more or any less that unconditional love is so threatening. I haven’t needed or wanted her gifts for many years. Refusing them now is a way of releasing myself from a subtle bondage. My desire for motherly affection, which year after year she projected and year after year I accepted as a cruel promise of the real thing, would crumble to dust at last.

I don’t have to love her because she’s my mother. I only have to love her because she’s a human being; exactly as divine and special as everyone else.

When she didn’t answer the next morning, I sent one of those eager “did you get my email?” emails. Then she left me a voicemail the next day, confirming with a parched, diverted voice that, yes, she had received both of my emails. That’s when I knew I could cut the cord myself.

I called her the next day, March 19, reached her, and read this statement:

Mother, I release you from any and every bond of responsibility for my welfare, and I release myself from any and every bond of responsibility for your welfare. I continue to love and respect you as a separate and equal human being.

She replied, to paraphrase, that’s the way it has always been and that’s the way it has to be. She closed with more advice on the wonders of a high-fat diet. It has been shown to cure epilepsy now as well as heart disease, she said. A pent-up perversion of breastmilk, I imagined.

Then it was done. I was relieved of the burden of being “loved” by her, which had amounted to winning the crumbs of affection that never led to the prize.

By the time my mother visited Portland, I had already moved “to the country” to live with my father. “Christmas” gifts arrived in April by way of my sister. I had warned her that I would not accept them, and that if she insisted on delivering them, then I would dispose of them, unopened.

She did. I did. I expect they’ve passed through the transfer station of the Town of New Gloucester by now as municipal waste.

The satisfaction that my 40-year-old self derives from this nuanced form of tantrum belongs more appropriately to my 5-year-old self; the angry 5-year-old self who could not understand his mother’s near-total absence, nor how her gifts could possibly be a disappointing replacement for something less tangible. Yet my 40-year-old self enjoyed his counter-rejection quite a bit more than was appropriate for a bearer of unconditional love.

I look in the mirror, intending to see a free man, yet am shocked to find that it is her rejected face I see there.

This anger belongs to my 5-year-old. I must allow him to have his anger; his own anger. I’ve been chasing him all over my brain saying “Shh! Shh! Let’s be civilized about this,” and then, when I finally let him speak, I foolishly give him my 40-year-old voice to speak with. My 5-year-old doesn’t blog. My 5-year-old doesn’t know where to hide his feelings or how to process them.

What does my 5-year-old want? He wants to be forgiven. He wants to be accepted. He wants, most of all, to be loved by me, the adult self he should have been able to rely on. And yet tomorrow’s self is coming up behind me, looking over my shoulder, and saying “forgive this, too.”

He is me. So I must ask myself: Am I the one chasing? Or am I the one running away?

---

April 27, 2015

The Cockroach, Reimagined

There once was a king whose kingdom seemed quite normal, almost to the point of being boring. He considered this something of a triumph, for in fact he himself was quite ill. The wisest healers in the kingdom had examined him scrupulously, bled him, applied leeches, poured noxious tonics down his throat and, of course, prayed for him morning and night. But he continued to whither slowly.

He did not, however, let it be known throughout the kingdom that he suffered so, for practical as well as personal reasons. His subjects looked to him for instruction, for justice, and for comfort; and though he often seemed to deliver them with some petulance, he never withdrew from these duties. He never took a day off from being ultimately responsible for the welfare of his people.

When a cockroach scurried across his banquet table one day, the king reflexively ordered the summary execution of the unredeemed pest. He expected it to be among the easiest decisions of the day.

But the servant who subsequently smashed the cockroach died on the spot. This was an aggravation for the king, but he was willing to excuse it as a particularly acute form of the type of mysterious illness he had been struggling with for many years.

When another servant died the next day, in the same way, all of the servants feared desperately for their lives. They were also silently angry at the king for his apparent insouciance. They were, it seemed, expendable. Disposable. Nameless, faceless and meaningless as individuals. The first servant who had died for the king’s pleasure had done so on his 27th birthday; the second left twin girls to his pregnant wife. Their names were John and Richard.

The king’s advisors bore the attributes of patience and attentiveness, and some of them, with extra effort, fostered compassion in themselves. But the cockroach quandary stumped them all. There was nothing sensible about it, nothing that conformed to natural law or native experience. They all felt as foolish and ill-equipped as young mothers whose own mothers are quick to criticize.

The keeper of the cockroach was pleased to have created, in very little time, a fitting cage for the misbehaving little insect. He was also a gentle and big-hearted man who tended to regard all of his wards with fondness. What he couldn’t keep were his wife and their son. She left him for a boastful and burly man. He died so suddenly that he never had a chance to regret it one last time.

For the faithful subject, his unwavering commitment to duty was a matter of course. He proudly served, and was sustained in large part by the effectiveness and dedication with which all of the faithful subjects served their country and the crown. But as his burden increased, no tide of moral fervor swept him forward. He was released by his seniors and abandoned by his juniors and shunned by his countrymen, and his unassailable spirit began to fade. There could be no witness to the heroism of his sacrifice, and at last his own shameful, treasonous testimony was swallowed up in the yawning void of cockroach’s black eyes. “Respect,” he wept.

The cockroach himself did not return, nor did the mouse, of course, from what were said to be several years of journeying. But at about same the time that people were starting to cite the story of as one of the classic old tales, came a very a terrifying development.

An old woman, a lowly hag, ran screaming through the courtyard half-naked, describing the horror of her nightmare to anyone who would not shrink away. “I ate my babies,” she wailed. “I ate my babies.”

It was well-known in the community that this clearly disagreeable woman had, as the sum of her life’s accomplishments, raised to adulthood two boys whose grim ends were timely enough to grant her a considerable ration of tolerance among her neighbors, if nothing else.

She was being herded back into her hovel with impatience, when suddenly a deafening roar was heard outside the gate. The roar grew louder as the gate itself was struck to splinters. A lion entered: a fierce, enraged, terrifying lion who stood taller than a man. “Respect,” he roared.

The lion’s teeth and claws tore the throat from every soldier who dared resist or couldn’t hide. He crushed the skull of the raving old woman. He crushed the keeper and he crushed the cages and none escaped alive. He feasted on the lungs of the advisors. He methodically battered and bruised and bled the servants without a moment of mercy.

Finally, the king received his ultimate insult. The lion pushed over the banquet table and, with the wheezing king trapped beneath, tore off his face with cruel precision. Then he cracked open his ribs, clawed out his heart and ate it.

Carrion birds flocked in his wake. In barely ten minutes the kingdom was destroyed. But in 10,000 years the acts of that day could not have been remembered nor rediscovered, so strong was the assault of time.

With every step, mother crushed all life to dust. But flowers sprang up from the wells of her footsteps. “Respect,” she whispered.