One More . . .

3-One

5-One

1-One15-One

One more trip to the doctor.

One more admission of humiliating symptoms.

One more physician‘s persevering uncertainty.

One more hunch about drugs even after repeated failures of 6 week trials.

One more hopeful bottle of toxins to ingest.

One more set of side-effects to endure.

One more crippling debility: Illness’s strong swing of a sharp ax into the pulp of my dignity cutting deeply.

One more intentional assault leaving me with a staggering and teetering propriety.

One more debility before I’m disqualified from sovereignty; stripped of my liberty, freedom, and independence, my self-reliant character reverts to childhood, a time of absolute dependence for survival.

One more obedient abdication of my extinct identities and forthcoming dog’s age.

One more no more.

 

“Hopeless Ness” and the Lass “Chance” (a recent chat) for marsh d.

atextingThis is an excerpt from a longer conversation with my cousin who’s been living with chronic pain and fibromyalgia.  This excerpt was of particular significance because it was answering an unasked question which was hidden “between the lines” regarding hopelessness.  If one is faced with 20 years of chronic pain, immobility, mood swings, etc. AND loss of hope what might their next stop be named?

Or is it the end of the line?

LUCY

Hello T. M. . . .,

I’m worried about you. You wrote a great post on hopelessness, are you feeling hopeless?

How can I help….I’m a good listener. You’ve poured your heart out onto the pages, you’ve been through a lot in your life and every one of those memories makes changes in the way our central nervous system functions and in the way the brain functions.

We (all of us who are chronically ill) put a lot of hope in those little pills. Those pills are able to aid you in functioning but can’t fix what has been broken. But, there is HOPE! The hope is within you and, with the help of another human being (not another pill), you can find a sense of peace and understanding.  Then we come to acceptance…..well, that’ll be a whole ‘nother blog.

 

T. M.

Hi Lucy:        
ahopeless
I made a promise to myself when I started this blog that I would be honest in my writing without sounding pitiful. I believe honesty transcends our diversity and therefore many can relate. The problem I have is that I suffer from untreatable maladies (brain, heart) and have recently been plagued by severe shooting pain in my lower and upper right side of my back, sciatica on my left leg, and most recently pain and weakness in my lower right leg. I was compromised with untreatable long-term illness, but then add these perpetual pains and immobility (I’ve been in pain every single day for 10 months): I take a cocktail of pain relief and muscle relaxants which work somewhat, but gastric bypass changes everything. Pardon my expression, but I feel like I’m all fucked up, none of my doctors seem to have the answers, and I am virtually homebound and use a small 3-wheeled walker to move around the house (which I’ll give to Rick when I’m finished with it). It’s almost impossible to have hope when you take stock of your life and all you see is lunacy, suffocation or heart attack, and constant and crippling pain. I’ve asked myself, “Am I really alive? Is this 24 hour ticktock simply doing time for a crime I didn’t commit? The only thing I look forward to is writing my blog. If only I could discover pain relief.

LUCY

I’m so sorry about your back pain….I have been through terrible sciatic pain and understand completely what you’re describing. It IS hard to abackpainhave hope!  What you’re describing is what everyone with fibro describes……many lose hope. Without hope, you have nothing. I was at that point at one time, too and made a plan to commit suicide. All seemed hopeless and I didn’t want to live a life of pain. i threw myself into research and coming to understand what was happening inside of me. I’m still coming to understand what’s happening…..researchers are still trying to come to understand what’s happening.  For 40 years, I went to the doctor, described my problem….he did tests, which all came back as normal. As long as the tests came back normal, there wasn’t a real problem. Thousands of people have gone through this same thing….test after test and all is normal. I was turned away and humiliated by a few specialists who didn’t believe me….no one would believe me. The doctors were trained in medical school that when someone like me comes in….to disregard the complaints….it’s all in her head and she’s making it up to get attention. Talk about losing hope!!!!!
Dr. Oz actually did a show on this a few months back and he admitted this is how the medical field has been trained …..to not take seriously any pain that can’t be diagnosed on a test. And, he admitted that he felt this way, too…..until just 2 years ago. Now, he has come to understand more of what’s actually going on inside of us. I am not alone.

Facebook has been like a miracle for me because I have found all of these other people just like me who have suffered for forty years and discounted, too. There are thousands and thousands of people all over the world who are suffering. The medical profession doesn’t know what to do with things they can’t see on a test!!  You have terrible pain in your back…..surely they must be able to see this pain on a scan. But, no….they won’t see it unless you have a herniated disc, that they can see. That, they can do something about because they can see it.

T. M.

I used to volunteer at The National Runaway Switchboard as a “liner” (the person who answers the call. I decided to continue until my problems surpassed those of the caller. Well, I stopped when Rick got sick and haven’t been back since. I could deal with the long-term illnesses if I could just shake the pain.

LUCY

I have learned so much. I went off on my own and spent a fortune on alternative therapy and a Fibro Specialist that wasn’t covered on my insurance plan. I had to drive 12 hours one way to get to see him….talk about desperate!! But, he helped me gain a semblance of a life back. alternative medicineIt was worth every penny.

What I’m trying to say is this….the doctors don’t have all the answers. In fact, they don’t have many of the answers. There is much more you can do to help alleviate the pain.

One thing I suggest is seeing a Pain Specialist. Jeff has been suffering with debilitating sciatic pain for some time. He couldn’t walk without his walker. He was losing hope.

He went to see the pain specialist who injected the spine…….because the injections helped somewhat, the doctor knew that a more radical treatment would work. He did the treatment on his sciatic nerve and it was a MIRACLE. He was able to walk, to stand up straight and to begin to enjoy life again.

Just the value of having one other person understand what you’re going through and to be able to relate with compassion and empathy is very healing.  I’ve seen it again and again as I talk to people. They all say it . . . empathy, simple compassion for another’s suffering.

Hu-mil-i-a-tion, Noun, 2. To Produce Resignation or Shame to the Dignity of Another

Humiliation comes in many flavors: decline, disgrace, resignation, ridicule, shame, stigma, and upset.

HUMILIATION BY RESIGNATION AND SHAME

A bike to a 11-year old is like a compass to an explorer; it ensures progress, freedom, and discovery.

I was eleven or so and riding my Columbia 3-speed (I really wanted the cocoa brown 10-speed Schwinn but when my father asked without acolumbiabikelooking at me – (a seldom used, but spot-on tactic {for parents reading this, it’s found in appendix C entitled “How To Use Their Own Ignorance” page MCDL of the “Parental Handbook} letting the child see for him/her self that they don’t know why they need the thing they’re asking for) “What difference can seven more gears make?  How is ten gears easier to ride than three gears?  I, of course, didn’t know about torque and gear ratios so I settled for the defensive approach, which really set myself up by saying a parent’s favorite answer, “Because everyone’s riding them!  Who rides a lime green, lame 3-speed, Columbia bike?” And then, in true triumphant spirit (knowing he played this round perfectly) my father delivered the estocada with deft precision, “You do, my boy!  You do!”

ahillAnd so I did, and so I was the only kid puttering around our neighborhood with a 3-speed which was okay until I reached the piedmont of the Great Lapham Hill.  Three speeds were clearly insufficient to maintain both balance and momentum required to propel me to the Hill’s summit.  Any bicyclist knows you need at least five or better ten gears!  And so I tried pedaling my 3-speed Columbia up the 47 degree slope and then it began, the gear torque problem; the gears on a 3-speed couldn’t withstand the amount of torque my slow pedaling and they began to slip, which in turn caused my pedals to slip, which in turn interrupted my concentrated, all-out pumping.  When my pedaling failed to produce any forward movement, which caused a stall, followed by imbalance, and eventual failure expressed by my bike and I crashing onto the street and sliding downhill several feet.  Laying in the street against the curb I was utterly ashamed of my feeble attempt and was, at last, resigned to the truth that my father’s tyrannical reign was impossible to denounce.  I felt absolutely deflated and a prisoner of my father’s own mania expressed by indifference and cruelty.  I was forced to wiggle from beneath the damned 3-speed and push not adograceride my 3-speed bike up Great Lapham Hill cursing at my father, which intensified with each step, while dragging my boyhood pride behind me.  Suddenly, from behind like a leash of Greyhounds, my classmates rode Schwinn Varsity Double-Shifter 10-Speeds flew past me and quickly disappeared behind the crest of the summit.  And then he approached quietly in the 1965 Rambler Wagon, pulled up next to me, lowered the passenger window and began his litany of taunts using his professorial tone.  At which time I sensed a kind of heartburn, but deeper and with greater volume. I began to perspire, brow first, then neck and shoulders.  This isn’t going to end on a positive note, I told myself.  And when I couldn’t restrain it any longer, out it flew like a bird set free.  But it wasn’t lunch that exploded from my mouth but a raw, quick, and cheeky bombardment of varied and loud expletives and vocabulary usually reserved for drunken sailors on furlough.  I was still screaming when he slowly closed the passenger window, put the Rambler in gear, and floored the V-8 engine which bellowed the blue smoke of burning oil.

Why did I challenge Great Lapham Hill when I possessed three crippling debilities: Obesity, three speeds, and an overwhelming hatred for my perpetually condescending father who refused to buy me a 10-speed as an example of his dominion.  Not because he was a tightwad, not avarsitybecause he couldn’t afford it, but simply to crush whatever degree of animosity I may harbor against him.  Looking back, he baited me at the very start by taking me to the bike store; then he fed me frenzied hopefulness when he stood before the twin-shifting, steel-forged and welded frame, drop handlebars, and racing seat, all painted a beautiful metallic cocoa brown, and asked, “How about this one?”  That was the exact bike I dreamt of every night.  But as I moved closer to where he stood, his eye caught the glint of a lime green bike obscured by Varsity’s and Paramount’s.  Yelling across the store at the sales clerk he said, “We’ll take this one.”  “But what about this one?  The Varsity?  This is the one I want. . .”

The sales clerk stood next to my father, paperwork in hand, when my father asked without looking at me – (a seldom used, but spot-on tactic {for parents reading this, it’s found in appendix C entitled “How To Use Their Own Ignorance” page MCDL of the “Parental Handbook} letting the child see for him/her self that they don’t know why they need the thing they’re asking for) “What difference can seven more gears make? Besides, if you can’t ride up Lapham Street on your very own 3-speed, why bother buying a bike?  Let’s get a baby carriage that you can push up the hill and have a tea party like a good little nancy.”

 

Hu-mil-i-a-tion, Noun, 1. To Disgrace or Ridicule the Dignity of Another

Humiliation comes in many flavors: decline, disgrace, resignation, ridicule, shame, stigma, and upset.

HUMILIATION BY DISGRACE OR RIDICULE:

ahancockDuring nine years of my corporate career I was employed by a prestigious and globally recognized design firm where I held the esteemed position of Director of Executive Service.  One of my fundamental responsibilities was to manage the execution of, or, if requested, provide service personally to guarantee the success, without fail, of any kind of celebration that a partner requested or attended. For example, one client favored Scotch Whisky so I was asked to produce a Scotch Whisky tasting of adagobabar35-year old Scotches: Bowmore, Tamnavalin, Berriach, The Macallan, and Laphroaig and pairing them with: smoked salmon, black bread, Roquefort cheese, venison, smoked duck, and Dagoba organic dark chocolates.  Another wanted me to hire handsome male and beautiful female models clothed in Hugo Boss black suits and Adrianna Papell  cocktail dresses so that his guests were surrounded by classic beauty and modern design.  Yet another wanted a nine foot by nine foot parcel of the reception area to display five hundred forced Paper Whites in full bloom during one of the harshest winters on record, so he could capitalize on his design theme, Fresh Air, and subtly reinforce his theme and that we’re capable of just about anything, including any ideas they may entertain. Paper Whites naturally bloom in spring, so we had to force them to bloom (by apaperwhitereplicating a spring-like environment) early.  But there are no guarantees when forcing bulbs to bloom.  But lo’ and behold all five hundred bulbs bloomed creating an intoxicating fragrance throughout the hot house, or so I was told by the gardener downstate moments after he informed me that their truck carrying my Paper Whites was caught in a white out, spun off the road, and landed chassis deep in fresh snow where my lovely Paper Whites shivered as they slowly froze.  But as luck would have it, the potential client canceled their appointment.  Rumor has it that they’d all ready selected a firm, and we were just a curiosity.  But my all-time favorite: Four hundred and ten Shamrock Shakes delivered precisely at 12:00 noon on St. Patrick’s day.

The occasion at which I was disgraced and ridiculed by friends and colleagues was a simple party thrown by a partner who wished to celebrate the winning of a new commission in China with his design and marketing team.  The celebration started after work hours which required me to stay late as my supervision was requested by the partner.  As team members began to leave and the last partner to depart for the day was the host of this party.  On his way out he bellowed, “give them anything they want!  Anything!”   A senior designer approached me to ask if I might open acocktailpartythe partner’s private stash.  (When I was promoted the Managing Partner said to me, “Your job is quite simple: First, make all the partners happy; Second, never question or deny a partner’s request no matter how preposterous it may seem.)”  So began my study of each partner from alcohol to zany; I interrogated their assistants to drill down to expectations, tolerance for substitution, and the senior assistant’s castigation should he/she book an airline ticket in the unbearable and reprehensible middle seat in coach.  I stockpiled their favorite liquors, pop, snacks, and wine as a precaution.  Most employees and partners were aware of the liquor cabinet but didn’t know its location, yet knew that I possessed the only key.  I followed my instructions and wheeled out a trolley cart filled with the nonpareil of spirits and wines that ever passed their lips.

And then the fateful question: “Hey, I hear you’ve got top-shelf snacks!  Like those thumb-sized cashews for Adriel,” (at $28.00 per pound, you acashewbet they’re for the senior partner I thought to myself.)  We want some of those to go with the liquor.  By now it was close to eight o’clock and I was beginning to tire as I unlocked the file drawer directly beneath the partner’s private fax machine.  I removed a two pound sack of cashews, opened it, and delivered it to Lacy, the marketing rep for the project.  Lacy and I had always been friends, the tit-for-tat type of friend.  She, like several others, based their success and traded in information.  My success was based on character, trust, and top-level confidentiality.  She failed to pluck any morsel of intel from me.

By the time Lacy stuck her petite paw into the bag of cashews, a small crowd gathered round.  At almost the same moment they all realized that the cashews were very warm (from sitting in a file drawer directly beneath the partner’s private fax machine.  And then Lacy said it first followed by taunting laughter; then another said it; then a small group in unison; and the wave of ridicule and disgrace rose higher and higher then tumbled, crushing me with its demeaning vitriol.  I grabbed my briefcase and left the office quickly hearing slowed apologies backed by more laughter.  The firm boasts about a zero-tolerance policy for harassment so when I filed my formal complaint against Lacy I was told by the HR manager that she’d already heard about the incident and that Lacy will face her comeuppance.  Oh yes, and that I should forget she said:

Hey everyone!  Hey look!  Warm nuts!  He serves them warm nuts.  He warms the Partner’s nuts!  You get that?  He warms the Partner’s nuts!

 

Hard Truths Abolish Life’s Peripheral Pleasures (for Jean)

amaculardegeneration

Living with mental illness reminds me of the perpetual tightening of sight associated with macular degeneration.  A close friend’s mother is facing a destiny of dusk, the light of day dimming earlier and earlier like the cold and snowy late months of fall.  She’s waiting for disease to throw the switch as though she hadn’t paid her utility bill.  She asked me one afternoon during a summer visit, how dark is dark; how blind is blind; once it’s dark and I’m blind will I continue farther into the cave and deeper into its darkness; or is my blindness an unmarked dead-end?

I sat in front of her incapable of producing some quip of levity to lighten the despair.  I didn’t know how to answer.  Or, what to say.  The absence of chit-chat hung between us like humidity.  Finally I answered the only way I knew how: honest and awestruck.

I said, I’m not living with an insensitive eventuality; my conditions (serious mental health and cardio-pulmonary compromise) are likely to flatten me, like being crushed by an immense breaking ocean wave, or belly flopping into the speeding approach of pasture, absent of any canopy of resistance my last minutes hopelessly free-falling like aimless snowflakes.  Then it happened.  Stopped.  Quiet and conscious while the tiniest pieces of life clung to daylight, right before it too, daylight, stopped.

acandystoreYou and I are the little boy and little girl whose noses are pressed flat against the confectionary store window.  Our yearning is painfully apparent to the plumply indulgent chocolatiers who’s moving each bit of life with the careful determination of a chess master to capitalize on each enticing, heavenly, and scrumptious creation.  We’re accustomed to forfeiting the peripheral pleasures which adorn life for those unscathed by physical mutiny.  We’re weary of the world’s pace, gaining speed to get anyplace but right here on this bench.  And we’re disinterested in watching a generation plow through a banal life ignoring its dangers and instead pursuing schedules chock full of unwieldily opportunities and difficult-to-deny distractions, especially those who’ve never stared into the intense and stoic countenance of a doctor about to tell you the most incomprehensible truth.

To wonder and inquire about your predetermination is natural and reserved for the courageous.  To have courage in light of the truth you must’ve stopped pursuing distractions, stopped running away from things, and stopped denying your mortality.  And life’s hard truths can only be understood by the courageous.