Bring cash 1966-2016

Old school. Ounces and paper, bring cash. New school. Milligrams and delivery systems, bring cash.12510315_10153822224207453_7428174823970056918_n (1) in my wheelchair in the ba10552366_10153976364483431_408240282732002922_nck of our van, Sheila driving,  a vinyl guy in a streaming world.  I’d been hesitant. Looking at the web to see what and how I would take “medicinal marijuana,” I see a galaxy too far out from the Zig Zag,  nickel bags, and black lights of the days when I worked at Headquarters East on Mass. Ave., a half-century ago.

Now I have to expand my database to include flowers, buds, and edibles, tinctures and topicals, vaporizers with accurate digital measurement for quantity and heat, and NO SMOKING WEED, instead “vaping.” Most disconcerting is that I have no clue how to convert milligrams to quantities I was familiar with to judge cost and benefit.

It’s a beautiful Saturday morning. I have a print-out of my temporary license from the Commonwealth of Massachusetts legally entitling me to purchase and use medical marijuana. I’m looking for an industrial area not too close to a corruptible residential or respectable commercial pharmaceutical and sundries store. Aha! The setting is familiar from long ago buys–a strip of 1 story warehouse buildings, but for the  unusually large number of  handicap parking spaces. Continue reading

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My Diagnosis-Part II

Three years later, in 1982, on a blazing hot summer weekend, my wife, my children (then ages eleven and eight), and I climbed down an embankment toward a small lake in the White Mountains of New Hampshire. Shockingly, I could not make my way back up the small slope. I had no strength in my legs, and my wife had to support me on her back and arm and drag me back to our car. Returning to Massachusetts, I entered the hospital for a second time. I left with a diagnosis of multiple sclerosis.

By Labor Day I was unable to ride a bike or walk for more than fifty yards without collapsing of fatigue, and an assortment of other symptoms had appeared. I had frequent episodes of urinary urgency and occasional incontinence. My wife reminded me and pleaded with me to go to the bathroom before leaving wherever we happened to be, but I hated the feeling of powerlessness that accompanied the realization that I needed to do such a thing.

Consequently, I often neglected to make sure I didn’t have to go, and accidents occurred. In 1982, for example, I attended my brother and sister-in-law’s wedding in New Jersey. I was taking medication to increase the holding capacity of my neurogenic bladder. I ate and drank during the festivities without regard to the risk, putting faith in my new prescription.

How relieved I was that the drug worked so effectively that I never had to make my way to the restroom at all. On the way home, however, the dam broke. Through New Jersey, Connecticut, Massachusetts, I peed and peed, helpless to control the flow. My pants, my socks, my seat, all were soaked, making it impos sible, from my point of view, to make my way to the men’s room at a highway stop. Even if I managed to change my clothes, the upholstery was thoroughly drenched; nor did I know whether my bladder had finally emptied.

During the next three years, my life was filled with changes that at the time 1 did not connect with my illness diagnosis. After all, I told myself and others, the worst part of my MS was the sadness that unexpectedly caught me on spring days when other people, alone or with partners or family, rode their bikes along the country roads and seaside ways around our town. The sense of freedom and spontaneity that such sights invited reminded me of my losses, and I attempted to keep my grief from spreading beyond the images in which I contained it. My wife freely admitted her own fear and pain, but I insisted that I was really not “in denial/’ as she suggested.

Yet within three years after diagnosis, I left the magic show and community with which I had been intimately involved since I was twenty-one years old, resigned from the hospital where I had worked for seven years, stopped the practice of psychotherapy, took a position as director of the nonprofit Institute for Human Evolution(!), resigned from that role to start up a magazine for parents, and, when that endeavor was not successful, resumed work as a psychotherapist in collaboration with a neuropsychology practice associated with a neurology group.

On a winter night in 1985, I placed my Apple lie on the kitchen table, put a filled teapot on the electric stove, and began to write a book to help individuals, couples, and families cope with the effects of multiple sclerosis. When I next looked up from the monitor, the water in the unheard whistling pot had evaporated and the pot was welded to the cooktop.

I wrote with passion and ease of the difficulties, dynamics, and strengths of people with chronic illness, drawing upon the lives of the people with whom I worked in therapy. Yet not even when the manuscript was published was I able to imagine or acknowledge that any of the events of the previous few years were linked to my own experience of, and coming to terms with, my chronic illness.

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The Bumpy Cart

“Life is suffering,” the Buddha stated as the first of the Four Noble Truths. The Pali word he used for suffering, dukkha, has its roots in the term for a cart’s axle badly fitted to a misaligned axle hole. The ride in such a cart is bumpy. The longer the trip the greater the possibility of breakdowns and additional damage and discomfort.

Whatever the plans of the cart’s owner, much can go badly. Perhaps he saw such a cart on his first forbidden excursion beyond his father’s palace walls. In English, the word suffering has its roots in the Latin sufferre derived from the Greek pherein, to bear or carry a heavy weight. Let’s imagine, then, to suffer is to carry the burden of having a damaged cart or body.

Wise men and women suggest that some degree of suffering is unavoidable. But they also distinguish between kinds of suffering. For some it is necessary or unnecessary, conscious or unconscious, inevitable as with aging or a consequence of indulgence or greed, sudden and acute or enduring and feeding on its own misery, intimate or insistent on infecting others.

Much of our suffering is a result of our attachment to our desires, not simply for desire itself. Do we suffer because we desire food or shelter or to be good? Surely, it is more than desire of itself. I, for example, desire some ice cream. But, unfortunately, we have none. Okay. I’m fine with that. It is what it is and life goes on. Or do I jump up and down in frustrated rage, or more likely due to my attachment to my desire and feeling a lack, a dissatisfaction that will emerge: life cannot be good nor worthwhile if I can’t have my ice cream.

Of course, it is natural to want good health. Being human we experience disappointment or sadness at its loss. But being human we can learn to limit the degree to which illness causes unnecessary suffering because of false beliefs, such as the necessity of the absence of illness to live well or our identification of the unfulfilled desire with the totality of our being.

A second type of suffering is the grief or sadness that naturally arises from death, injury, or loss to those whom we love. This is an emotion built into our human or mammalian nature and as a result of the drives that lead us to seek attachments to and bonds with others. The absence of these feelings may indicate a defect in my character rather than spiritual achievement. Continue reading

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My Diagnosis 1979-Part I

This is how I remember it. On a spring day in 1979, I left my car at a local service station for a minor repair. As I walked three-quarters of a mile home, I noticed that I stumbled as the toe of my left foot seemed to drag behind me and stub itself on the ground. I wondered whether passing drivers or even my neighbors might think me drunk. I let the incident pass and was bothered no more except for an occasional trip on the stairs.

At that time, I was a practicing psychologist at a children’s hospital, married for eleven years, and the father of two children. Our family owned and participated in a movie theater and its internationally respected resident stage magic company. One of my roles was to change the metal letters on the theater marquee every weekend night. As the seasons rolled into summer and fall, I experienced more and more difficulty keeping my footing as I hauled the wooden crates full of letters down to the street from the upstairs workshop where they were kept.

On Sunday show days, costumed as a toy soldier, I stood on a small platform behind a stand at which I sold souvenir programs. My leg and back would become strained before the curtain was raised and I could get down from my perch. Quickly changing into another costume, 1 rushed backstage to assist with props and make a brief appearance during one of the magic tricks.

But more and more often an unexpected urge to urinate could not be denied, and I would run to the bathroom. There were even several times when I wet myself, but I managed to conceal the stain. I spoke of these events to no one. I just carried on, assuming that most of my symptoms were psychological. The tightness around my abdomen, difficulty sleeping through the night, my urinary problems, my fatigue, paresthesia, irritability—were these not characteristic of anxiety disorders?v

On Thanksgiving Day that year, I could no longer carry on as if nothing were wrong. I had been swimming in a warm indoor pool, and when I got out of the water, my strength was sapped. 1 could barely stand or walk. Only later did I learn that an early test for multiple sclerosis was to place people in warm baths and observe the temperature’s effect on their bodies.

A severe back spasm the next day brought me to the hospital, and after reporting on my recent symptoms, I was admitted. I entered the hospital for an evaluation to rule out, as my wife saw annotated on an admitting sheet, a spinal cord tumor. Two days later, following several evaluative procedures of varying levels of discomfort, I was discharged with a diagnosis of viral lesions of the spinal cord.

I did not know that this was a label for the cause of the symptoms that were to be diagnosed three years later as multiple sclerosis. My life, it seemed to me, remained unchanged. I accepted with apparent unconcern the incidents that once in awhile literally tripped me up. I just chalked them up to the spinal cord lesions and put them out of mind. I had too busy a life to think about what had never occurred to me at all— the possibility that I might, in fact, be ill.

The idea of illness was not remotely in my mind. Physical illness was not a part of my family or personal history. As a child and young adult, I was rarely ill, nor could I recall serious illnesses among my immediate family. Even the death of my grandfather when I was thirteen seemed more a function of his old age (he was seventy-four) than of the cancer from which he had suffered.

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For it is not just we, the ill, who are responsible for our experience of illness…

When we judge ourselves or our loved ones to be ill enough to seek medical advice, we are usually prepared to place ourselves in the hands of another to receive care and be relieved of what worries and ails us. The illness experience often awakens feelings and wishes associated with childhood dependency. Doctors are often, without justification or not, the targets of our and our families’ anger, fears, and excessive hopes. Our fantasy is someone with a good bedside manner, recognized in his field, exquisitely competent impeccable decision making skills, and knows just how to balance patient autonomy and professional judgement.

The fault often lies with neither our frustrated selves nor with the doctor. To some degree, simply by virtue of being a practitioner of the medical arts and the locus of cultural themes of suffering, the doctor is going to be on the receiving end of emotional expressions of unrelieved human distress. Who or what can or will replace the power of the art of medicine and faith in the physician as their status and expertise is challenged by pharmacy clinics, the internet, and consumer based pharmaceutical advertising among other forces is yet to be seen.

For it not just we, the ill, who are responsible for our experience of illness, but the professionals who provide care. What might be some characteristics that the “good-enough” professional caregiver will need to act effectively for us?

Understanding the existence, power, and importance of the archetype of the healer. As the belief in the curative powers of the archetypal physician is shaken, the concerned person who seems to care and truly wants to listen to what is wrong may be handed the healer’s robe. Continue reading

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It is what it is and it’s not

Ambiguity is a major part of living with any chronic illness. In the earliest years of my illness. It shook me up quite a bit when I would awaken at 2 or 3 or 4 in the morning unable to feel my legs. I called that time my “Hour of the Wolf.” I lay there and tried to move them, which it seems I did but I had difficulty telling. They seemed so heavy and at the same time not there, as if I’ve been cut off at the waist.

I didn’t wake Sheila because I thought it was probably just a false alarm but I also felt as if this is it. maybe this is the event that would place me in a wheelchair or leave me less mobile than before. Maybe this is the morning I’d be unable to walk down stairs, go to work, or care for the children. Or maybe these were just transient discomforts, soon to pass, leaving me physically no worse.  

I tried to get my legs over the bed onto the floor and I tested them to see if they would still support my weight there was so stiff. But I got myself up and started walking slowly around the darkroom, balancing with one hand touching the wall. As my legs limbered up, I got around the house, pleased that I could walk, but unsure whether my legs were worse off than before.

Back in bed I lay awake thinking about disease, disability, and death and cradled in the arms of philosophy,  would drift off to sleep. In the morning, usually no worse other than weary, I would go about my day. I felt as if mortality had been whispered in my ear and I wished  that my awareness of life’s fragility enabled me to be more compassionate toward others. Adjustment to chronic illness and its unpredictable course is not a once-and-for-all event for us never to be faced again.

As with human nature, a particular chronic illness affects all of us in identical ways, some of us in similar respects, and some of the stuff of my illness is mine alone,–unique, distinct, unrepeatable. We and our chronic illness experience are sui generis. The ambiguity of severity, course, and outcomes is universal and unknowable. For some our  illness is relatively benign with minor symptoms that impact minimally upon our  functioning.

For other of us,  it is from the start a terrible scourge  affecting movement, balance, coordination, vision, pain and the mind in rapid and disheartening succession or simultaneity. Our symptoms might progress to a certain level of impairment,  use of a cane or wheelchair, for example, and then remain more or less stable for many months or years until there is a new collection of symptoms.

And then Just as we think that the waters of change are calm and smooth sailing lies ahead–Wham! Neither complete stability nor an inevitable downward progression is typical of most chronic illness but what we must expect is the unexpected. Most of us with chronic illness go through a back-and-forth process of adjustment. And because each change, no matter how small it appears, can alter the physical, psychological, and social conditions of our lives , the need to adapt to change itself becomes intensified. with chronic illness uncertainty about the future never ends. Continue reading

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Are there songs for which you weep?

Greed comes in many forms. We most often think of it as an unnecessary desire for “too much” material acquisition. Of course, we can be greedy for anything-sex, power, knowledge. Among the Christian seven deadly sins, it is differentiated from other “too much” faults such as lust and gluttony. The former is commonly associated with sex and the latter with food or fashion. All three characterize appetites well beyond what is necessary for sustenance. So taking them together as thoughts and deeds of excess, I want to briefly discuss greed as it relates to illness and ourselves.

The impulse for this piece came from the tears I shed, unable to to sleep due spasticity arising from another uti, listening to Levon Helm, ill with cancer, singing Happy Traum’s “Golden Bird,” on his Grammy winning Electric Dirt album in the “high, lonesome wail” of his blues and Appalachian roots, 3 years before his death. The song, in voice and lyric, describes for me the danger to self and others the need to grasp and hold onto what I feel I  must have regardless of cost.

The song is sung by a man who “walking along a path in the mountains,” sees a bird with golden wings in the sun of the morning..                                                                          It’s beauty was such, and I felt I must have it, he goes on, and
Finally angered that I couldn’t catch it, he finds  
a stone by a mountain stream flowing…
It felt so warm and alive in my hand
It was an arrow, my arm was a bow…then… a cry pierced the air…
Weeping I left it, the thing that had fallen
Blood stained my hands and tears wet my cheek.

That night as he lays in his bed, he hears the sound of wings

and The room became bathed in a warm, golden glow
I opened my eyes and a woman stood there, singing
Did not you know when you hurt me so cruelly
I was your love, I was your friend.
You couldn’t stand it that I was so free
Now you will never see me again.

Of course, in one reading, it is the sad tale of a man who loses a woman he loved, for he tried to control her and treated her so cruelly. And as sad a commonplace as the caged bird that does not sung may be, that is not my fate. So let me not talk falsely. Continue reading

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Schadenfreude…an assassin’s blade

One of the most wonderful words to describe an emotion that is so poorly thought of by every tradition is schadenfreude. To my ear, it sounds onomatopoeic, a gentle hush with a chilling twist at the end, like an assassin’s blade. Schadenfreude can be most simply defined as taking pleasure in the misfortune of others and more broadly envy at others’ good fortune. Or I’m glad it’s not me! Another terrific phrase with much the same meaning is morose delectation, the compulsive enjoyment of an evil thought, as if one kept running one’s tongue over a broken tooth. But I’ll stick with schadenfreude.

The relevance of schadenfreude to those of us with chronic illness and disability is considerable. There may be times, after all, when we are jealous of what others can do that we cannot, take vacations, for example, or be able to get together in places that are not handicap friendly, or make arrangements in a fraction of the time we need to plan.

We may act out by being critical  of our friends’ destinations or reluctant to hear their tales. What’s the big deal we may say to ourselves, imagining that we see our little world in greater depth and proud that we have such a small carbon footprint compared to the mileage others put on on their sky polluting flights.

Of course, the motivation behind the thought is less from environmental  concern and more a  “passive aggressive” jealousy for their particular good time out of our reach. We also might harbor a secret smile that the weather was not as warm for them as anticipated. Surely, if asked and after a moment of self reflection, we would not wish our friends bad luck, but there are occasions enough when we may have a quick flash of thanks that they, not we, are victims of ill fortune.

 It is no different than the reluctance some may feel at visiting another couple of family who seems happier, healthier, better off in some way than our own. And at times, we direct this feeling toward ourselves rather than others and feel depressed or self-critical. In the early years of my illness when I could not bike or walk longer distances, I did not enjoy sunny weekends. I preferred clouds or rain huddled in a corner with unconscious self-pity. An excerpt from one of my earliest ms related poems, “Exacerbation,” expresses a touch of what I felt.

I’ll  admit  it.  I  was  scared,  dragged  back
to  the  early  days   when  humbled  by  illness,  
I  envied  the  doings of  the  careless,   confident  striders  
among  the  well,  the  healthy  Houdinis  unshackled  by  time
who  swiveled  on  bikes  with  a  kid’s  ease   
counting circles of knee and wheel to race home.

In Catholic tradition, to sin against the holy spirit was a most grievous, if not unforgivable, fault. As I explored this idea that I had always vaguely associated with schadenfreude, I see that it was initially envy of a companion’s spiritual progress. How many “spiritual” communities, churches, fellowships are not filled with this? As is true with so much of what takes place in ourselves, there is a tension between the animals we are and the humans we wish to be.      

How apt that neurological studies show that strong feelings of envy stimulated  physical pain nodes and reward areas were turned on by learning that the envied had suffered misfortune. In fact, brain imaging reveals a significant correlation between envy and schadenfreude. I suggest that it is possible to be addicted to schadenfreude. Continue reading

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Amazing grace

Defense mechanisms are among the most useful and, literally, the most dangerous aspects of our way of being in the world. A few we are most familiar with as a result of our own self observation, psych 101, or the popular language of AA, for example, include denial, rationalization, intellectualization, regression.

Regression is a reversion to earlier forms of behavior (putting my hands over my ears took avoid heading bad news). Intellectualization is a focus on the analysis of a situation rather than its emotional components (when I was first diagnosed with MS, when asked about it, I would describe its causation-demyelination-, historical origins-medieval Europe, or symptoms, but not its actual current or potential effects upon my life).

Rationalization is familiar to all of us because we employ it so frequently, giving ourselves plausible but false reasons for what we say or do (I can’t go to event X because of the weather, when actually I’m lazy or self-centered). It’s not a white lie because I believe it myself.

And there is denial! Probably the buffer most widely known in recent years because of its association with AA, and the alleged inability of alcoholics to acknowledge their addiction. But it’s applicable elsewhere (when I did not get hand controls despite the danger I was to myself and others).

In most psychological texts defense mechanisms are presented as unconscious means by which we protect our self image, pride, or vanity from perceived threats to their ability to sustain themselves. We rationalize self-centered acts, for example, because we firmly believe ourselves to be caring.

But let me go beyond that. What is so dangerous that it is worthwhile to lie or not to see reality clearly? And I suggest that what these mechanism defend against is two fundamental beliefs at the core of our modern notion of an autonomous and integrated self.

First, we want to maintain the experience of ourselves as individuals. If we were “undefended,” we might get how often what we do contradicts what we say or how we see ourselves in our mental mirrors and there can be a shattering experience. The person we think we are might turn out to be but multiple fragments. No one, but many. The “I” is no self, but a construct that holds our ever changing modern body/minds together.

Secondly, without these defenses which hold “me” in place, I would feel. They resist life. Observing my contradictions, my selfishness, my pettiness, my ignorance I would feel so deeply ashamed. Conscience, in other words, would awaken.

Defense mechanisms are a spell that keeps us enthralled to the demon of ignorance. They keep us from feeling in our bones fundamental facts of life–we have bodies that will age and sicken and die over time and we also possess a spirit that in its limited time can be truthful, compassionate, alive.

Amazing grace does not necessarily arrive gently, it may come as a shock that brings us to our knees. Once blind, but now seeing is not always welcome. After cataract operations that remove the veil from their eyes, some cannot adjust to the world of sight. As my friend Heidi reminds me that when the former prisoner from the cave, blinded by the light of reality, returns to the cave to tell the current prisoners of the world outside, he is killed by them.

John Newton, the composer of “Amazing Grace”, wrote his hymn after he survived a storm while captain of a slave ship and fulfilling a promise he made to the Lord if he were saved. With illness, frailty, and dependence we, too, are blessed with a great need to be honest with ourselves. The alternative is enslavement by the true illness and disability of self-deceit and delusion. Continue reading

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Acedia, sloth, and the new lift

Monks and followers in most spiritual traditions are warned against the fault of laziness least it lead to the greater fault of what is called in Christian writings, acedia, one of the seven deadly sins. Acedia, sometimes called sloth, is a state of indifference to either the outcome of one’s practice or to the efforts required to achieve one’s meditative or prayerful aims. Kathleen Norris describes it as “not-caring, or being unable to care, and ultimately, being unable to care that you can’t care.”

In “ordinary” life, sloth may lead to lack of discipline, shoddy work, and ultimately, we are warned in guides to moral improvement, poverty and its harmful effects on family and community. Although acedia could be associated with depression, it was not necessarily. For example, distractions of entertainment, gambling and other “sinful” pleasures, excessive daydreaming, even too much “idle time” in the library, or discouragement about rewards for one’s efforts,  could be signs of sloth.

Most importantly, acedia, as the case with many other “sinful” acts, is one of “wrong” thinking, for it is the thought about the perceived object that leads us astray down the crooked path and not the object. This is like blaming a newspaper article about a person with MS “better” or “worse” of than me for being despondent or fearful, rather than taking responsibility for my own thoughts and not allow them to lead me “into temptation.”

The reason I bring it up here is my own struggle with sloth. After all, I make the effort to use my illness and disability as a means to greater mindfulness and “work” on my being. It’s the case now, however, that falls from bad transfers and the need to call EMTs for a lift assist have and hopefully will continue to be greatly diminished or even eliminated, with the recent installation of an overhead slingless lift that takes me from bed to wheelchair and back. Now I have to pay attention so I don’t get whacked in the head with it, but the need to focus as carefully is admittedly less. Continue reading

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