Peripheral Neuropathy and pickup-trucks

Dear Friends,


The reason for the long hiatus since my last blog posting is that I have been experiencing difficulty accurately touch-typing. For me, this has been extraordinarily frustrating, and personally very discouraging. The experience led to my being more than a little depressed. After spending too much time (by my estimate) in the doldrums, I fired-up a computer application that has been lying dormant on my computer ever since I aquired it in the hopes that it could generate—from the audio track of a completed episode—a printed transcript of a GLOW[1] episode, a task for which it proved entirely unsuitable. The program is a voice-activated dictation application.[2] It works well when a speaker devotes a modicum of time “teaching” it the nuances of one’s particular diction and typical vocabulary. It quite dramatically fails to interpret voices with which it has had no previous exposure or training.

So I’ve devoted the last few days to learning about the program and tutoring myself to master the delicate art of dictation. The program is admirably written and comparatively easy to learn (as much as learning an unfamiliar computer program is ever “easy”). Dictation is a skill that was far more common in the generation previous to mine. It fell all but completely out of use in my “do-it-yourself” generation. It has only been recently revived when computer processing power allowed its complex implementation to be ported onto computer platforms. I’m employing this clever program to generate the text of this blog. It is going remarkably well and gives me great encouragement.

But I’m finding that articulating my thoughts, out loud, constitutes a distinctly different creative process than letting my thoughts tumble around in my mind, in silence, before I commit them to the keyboard. For me, even if no one is present to hear them, speaking my thoughts out loud, before I’m ready, just feels a little like a violation of some of my privacy. I’ve no doubt it would feel differently for an extrovert! Fluent dictation will take some time and adjustment. I am curious to learn what kinds of differences will result from having to verbalize my thoughts ahead of their being written. Creativity, in my observation, has always been inspired by facing constraints, so I’m curious to find what changes are in store for the future.

In the meanwhile, I’m pleased to assert that, in what follows, any spelling errors or typographic faux pas are completely the responsibility of my software. They will not be my responsibility (this time)![3]    🙂


Imagine a pick-up truck moving along steadily at 30-odd miles per hour. The pickup truck is a metaphor for the regularly-scheduled chemo infusions I’ve, until recently, been receiving. Now imagine that a pile of bricks had been loaded onto the bed of the truck, conveniently positioned by the rear gate. The bricks represent the multitude of effects the chemotherapeutic infusions have had on my body: both beneficial and damaging.

When I terminated my bi-monthly infusion treatments—seven weeks ago, now—I had, metaphorically speaking, slammed on the brakes of my pick-up truck, bringing it to an abrupt stop. I expected that I would immediately feel better. I wanted the ill effects of my treatment to cease as abruptly as the pickup had.

What I’d neglected to consider is that a load of bricks has its own mass and momentum, entirely independent of the pickup truck. This meant that—though the truck had stopped—the bricks would continue their forward motion, sliding along on the bed of the truck until their energy was dissipated by friction (or until they collided with the cab). Simple physics. Why hadn’t I thought of that?


The particular “brick” that has most bothered me in the aftermath of terminating my chemo infusions is peripheral neuropathy. It is a condition that adversely affects the extremities (fingers and toes, prime, among others). There are other medical conditions that are associated with it, but peripheral neuropathy is a well-recognized effect of cancer treatments. In my case, my neuropathy only really became evident after my infusions were terminated (after the pickup truck had braked to a halt). What’s worse is that the effects, far from being diffused by time, have become increasingly debilitating as the days have passed. My oncologist suggests patience. She assures me that the symptoms will disappear, but prepares me for the fact that it may take months… or even years.

Neuropathy causes the extremities to tingle, be painful and be particularly sensitive to cold. It appears that (like my damaged taste buds) the affected nerve endings at the extremeties of my body send confusing signals to my brain. In my case, my fingers are not sensitive enough to discriminate when they are on the “home keys” of my computer keyboard. My fingers dutifully aim at the correct keys, but seem unable to recognize the physical properties of my fingers to discern (or adjust to) when they’ve lighted on the proper keys. Something similar is true of my feet. I must be especially careful going downstairs because my feet give me the impression of landing on the tread several inches earlier than my physical feet actually touch the step. The other day, while walking across the patio, I distinctly felt as if I were going downhill and executed a little running step to slow down my momentum. Of course, since there was no reason to slow down, my running step looked like part of a little unnecessary dance routine. But, at least, it was not dangerous; whereas losing my balance or trusting in an erroneous depth perception is an altogether possible danger. So I’ve become attentive.

These, and related sensations, can provoke frustration and even anger. I am not prone to anger. I am well aware that my cancer justifies feelings of anger, and that for many patients, being afflicted with cancer likely arouses legitimate feelings of anger. I am not one of these, as far as I can tell. Anger belongs to a fundamental complement of emotions experienced by human beings. But I have never experienced the beneficial effects of personal anger. At most, my anger gives me a temporary relief from some stress. But it replaces my relief with a considerable bit of stress of its own. While I can admit that many individuals may benefit from expressing anger in ways I have not yet learned, anger has never proven (for me) to provide a solution to what may have caused it in the first place. Instead, faced with the kind of frustration and discouragement that peripheral neuropathy causes me, I tend to seek out alternatives that can overcome the limitations of my experience… such as a dictation system that can eliminate or replace my reliance on keyboards.

I’m curious about why it is that I don’t rely on anger as much as others of my friends do. I wonder what it was that dampened the value of this emotion in my personality. I have an early memory about learning to deal with pain or frustration. It suggested an alternative to anger. The alernative was taught me by my parents and was reinforced by the Dominican Sisters who were my elementary school teachers. When, as a child, I became obsessed by things beyond my control; or when I suffered a physical pain that was not life-threatening (but seemed worth exaggerating for the pity it might evoke), I was routinely advised  to “offer it up.” What was meant by this suggestion was that my pain—taken in a broader context—could be transformed, by dint of my own attitude, from something negative into something beneficial. By “offering up” my ‘negative’ suffering I, myself, could convert it to some equivalent “positive energy” for someone else in need of it.

As a child, I interpreted this action as having an immediate effect. If I generously offered up my pain (and ceased complaining about it), someone else in the world for whom I dedicated my pain, might feel a lightening or compensating relief of their own pain; or a soul “in Purgatory” might ascend from that temporary confinement to a more complete participation in the joys of Paradise. It was the equivalent of the physical Law of the Conservation of Energy; only this had to do with the “Conservation of Painlessness”.

As an adult, these explanations involve an acquiescence to an entire theological construct. Such a construct may or may not be as compelling as it may have been in childhood. Or, for those not raised as I was, such a transformation of pain into benefit might not even seem to have any validity at all. But, as I think about it today, it would be foolhardy to dismiss the lessons given by wise mentors to children. Doing so risks dismissing, as childish nonsense, the underlying message my teachers were intending to convey. To consider the suffering of the world, when one confronts one’s own suffering, is an admonition that has enormous (and somewhat forgotten) value. One has only to read the Book of Job to realize there are more complex issues at stake than one’s personal suffering.

One of the least appealing aspects of my illness is its necessary focus on self-awareness. I am admonished to monitor my blood pressure several times a day. I am asked to take a glucose reading in the mornings and evenings. I have an assortment of pills to take at different times during the day. I must guard my nutritional intake. I must partake of sufficient exercise. I become, perforce, increasingly sensitive to routine things I formerly took for granted (such as touch-typing or merely walking).

It is well and good that I pay attention to such details. But one of the enemies of a balanced personality (and a serious impediment to a reciprocal community life) is self-absorption. Self-absorbtion is perilously proximate to self-awareness, especially the kind of self-awareness that arises from and is prompted by discomfort and pain.

So, as I struggle with a user interface resulting from thousands of lines of inanimate software code and an unnatural-feeling but remarkably-effective method of textual input; employed for the purpose of overcoming the (in the larger context, trivial) inconvenience of a neuropathic by-product of the treatment of my life-threatening illness, I am altogether grateful for my childhood upbringing that taught me to step outside my self-attentive discomforts to dedicate them for the lifting of pain, in general, from a pained world.

As a child, I had no doubt about the efficacy of my attitudinal reorientation; no doubt that my pain could be redirected to remediate pain elsewhere. As an adult, I can but hope and trust that something of the sort still really will happen. At the very least, its good for me to believe that it will.







[3]  I couldn’t help myself… after the program was through transcribing my dictation, I hurriedly scanned and corrected the (remarkably few) typographic oddities that had been incorporated in the text. Homophones and homonyms seem to be sources of difficulty. I’ll do a bit more “training exercises” before attempting my next blog posting.

Chemo Infusion 2/12—”What, Me Worry?”

Dear Friends,


This week has been characterized, unusually, by my experiencing a series of mental flashbacks of members of my family who have needed medical intervention for their serious diseases.  Not entirely unrelated are the following factoids: • I once had the opportunity to digitize a fragment of papyrus (dating from 3,000 B.C.), that describes initial Egyptian investigations into brain surgery.  • There exist hair-raising stories describing Civil War surgeries in which doctors, recognizing, by then, that speed of operation could minimize shock in a patient, competed against one another in ultra-quick sawing.  Superior surgeons completed amputations in record time—albeit sometimes (and more than occasionally, as a matter of written record)—accidentally lopping off adjoining appendages in addition to intended limbs.)  • Today, molecular and nanotechnologies promise another revolution in medical practice.  Emerging from crude, investigatory beginnings, physicians have progressively mastered knowledge of manifold systems, molecular interactions and interventional techniques.

Yet for all that comforting reality, I wish I had a bit more of Alfred E. Neuman’s attitude of “What, me worry?”


One weekend of my life I will surely never forget took place in the early 1970s.  My eldest daughter, Anastasia, was but a toddler.  She suffered from petite mal seizures of unknown etiology, for which she took liquid medications. On my way home that Friday I stopped by the pharmacy to pick up a fresh bottle.  Typically during a petit mal, we’d observe Anastasia suddenly stop whatever she may have been doing.  A glassy-eyed unfocused stare would come over her face for 10 or 15 (?) seconds as her body and limbs took on an uncontrolled rigid jerkiness.  Seconds later, all the symptoms would disappear in a flash.  Anastasia would appear to be slightly disoriented for a second.  Then, she would blithely return to whatever it was she was doing before the epilepsy struck her.  But on that weekend’s Saturday morning, her mother and I watched one of Anastasia’s fits with horrible fascination.  It had a longer duration than usual and was less controlled.  Her body and arms swayed according to what appeared to be a macabre dance choreography.  She was obviously more discomfited during and after the long episode.  She seemed tired when she came out of it; seemingly, an eternity later.

What followed, of course, were urgent calls to doctor’s offices, hospitals, emergency rooms and pharmacies.  (Communications have improved a lot over the past 40 years.)  I was a callow father in my early thirties.  I had no idea of the import of the innocent question that, in desperation, I blurted out after an otherwise frustratingly futile phone conversation I’d been having with a pharmacist: “Might there be any significance in the fact that Anastasia’s medicine is typically orange in color, but the bottle I picked up on Friday is raspberry in color?”

There was.  As it turned out we had been, all unknowing, coaxing Anastasia to swallow a medication five times stronger than the dose prescribed for her.  Accidents happen.

For those who have not met Anastasia, I should explain that the story of this accident ends well.  She recovered from the overdose quickly (as toddlers do).  Weeks later the genesis of her petit mals was definitively diagnosed as resulting from a disease called tuburous sclerosis. Doctors predicted that Anastasia would live into her teens; but that we could not expect her to survive longer than that.  This coming November, our family fully expects to celebrate Anastasia’s 43rd birthday! Although disabled, Anastasia’s is a joyous and cheer-filled life.  She works as a weaver in a sheltered workshop (and would gladly sell you some placemats, table runners, or other woven goods she and her colleagues are so proud to create).  It surely looks as if she may outlive me!  Predictions, even medical predictions, don’t always come true.

In my Cancer Clinic, I wear a wrist bracelet with my identification.  Even so, as each new bag of medications is attached to the IV pole, the nurse asks me to state, aloud, my name and birthdate.  When particular drugs are being prepared for infusion a second nurse is summoned to witness my answers as to my identity, and to corroborate that the medication being injected into me is the one that has been prescribed for me and not another patient.  This procedure should console me… save for the fact that I know that such a regimen would not have been put into place had there not been prior experience of mistakes being made.

When I appeared at my Cancer Clinic last Friday it was to be “unhooked” from my fanny pack with its 48-hour continual infusion.  I was greeted cheerfully by the attending nurse who said “You’ve been here before [and presumably know your way around].  Go on in, and get comfortable.  Someone will be with you in just a moment.”  Confidently, I strode down the hallway but quickly found myself in a warren of physician’s offices and small specialized laboratory rooms.  I’d clearly gotten lost and didn’t belong there. Abashed, I retraced my steps and eventually found my way to the infusion rooms.

I’ve got a pretty good sense of direction.  I didn’t even get very lost in the wonderfully crooked streets of Rome or Milan, or the anti-parallel ones of Krakow.  [In the case of many Medieval Cities, the central nest of alleys and narrow lanes are not merely artifacts of geography or topography, but were intentionally designed to confound and confuse intruding marauders who might have penetrated the outer perimeter walls of the city.]  So I was curious about having gotten lost in an office building… until I realized that, quite possibly (read “likely”), I didn’t really WANT to get to the infusion rooms.

Although culturally endorsed, its actually contrary to some deeply imbedded genetic code to admit Fear.  Yet, for the past two days, on the run-up to only my second full days of chemotherapy, Monica noted that I’ve become increasingly apprehensive.  I’ve felt it, too.  I’m in the best of care and am possessed of the most competent academic and clinical advice about my condition.  My chemotherapy is administered in sterile and professionally controlled circumstances by experienced and exceptionally well-trained nurses.  But despite these rational understandings, I’m afraid!  …of mistakes;  …of possible pain;  …of the integrity of my body being violated by incisions and needles;  …of poison;  …of my cancer;  …of ignorance and the helplessness that comes from it;  …of, perhaps, losing control;  …of potential humiliation;  of… of… of.  [Its worth noting that these fears all relate to the ego.]

The mischievous face of Alfred E. Neuman mocks me with his iconic motto: “What, me worry?”  Sure, me worry.  And for good reason.

Its counter-productive to deny Fear.  The machismo attitude comes from a desire to appear invincible to whatever it is one fears.  But to the extent denial or machismo dulls Fear, it can be harmful.  Nor, evidently, is rational analysis effective at dampening this primal instinct.  Fear is a complex response upon which depends survival of individuals (and, indeed, species).  Possessing Fear we can instantaneously respond to dangers, seen or felt.  Fear prepares our body physically, mentally, and chemically to respond to a challenge.  Fear heightens our senses and alerts our defensive attitude.  Therefore: “Fear is our friend.”

Nevertheless, I feel embarrassed to admit to Fear particularly when I know, full well, the proper actions to take, and know that I WILL take them.  [Isn’t Fear unnecessary under such conditions?]  In addition, I am intensely conscious of what an extraordinary gift it is to have access to and to receive the care I’m undergoing.  [Doesn’t Fear denigrate such an undeserved gift?]  I am intellectually confident and, indeed, certain (as can be) that the treatment I’m receiving will rid me of my cancer.  [So why be Fearful at all?]   Yet, Fear exists.

My relation to Fear seems to be another conundrum and paradox.  I’m becoming increasingly aware of living with such conundra.  But despite the awkwardness I feel about feeling Fear, I am very grateful that this core instinct is not diminished in me.

I am frightened.  I’ll go.  But I’m right to be wary.



• About CEDARS (where Anastasia lives) and ArtistWithin (where Anastasia and her friends, the weavers, illustrators and ceramicists sell their goods to the public) —
• About MAD Magazine and Alfred E. Neuman —