A Story For All Of Us

apartyMania is rich with almost-entertaining stories of bravado, of haphazard action, of disobeying most laws, of discarding sexual partners like “he loves me, he loves me not” petals.  But to a Manic, his/her episode could last years resulting in an incoherent swath of personal wreckage whose repetition finally drained even a mother’s irrevocable devotion (tucked in the coffee can behind the flour); The Manic loves a great party yet never buys a round.  The Manic’s desperate all in bluff with a pair of five’s causes a stumble, then a slip, finally sinking to Mania’s Skid Row: rancid, broke, estranged, lost, and nameless.  Until Sanity emerges from her safe place dragging you past leering, inflated, lobby guards who toss their opinions about each other like outfielders in a softball game.

alowlandSanity does her best to shield Mania from their sickening taunts; too late: liking to the daring distillers in Scotland (less than two %) who cross the authority of majority by bottling their whisky unfiltered and unadulterated, Mania scoops up her life’s residue and bits of character and leaps over the guard stand tackling two and beating the outspoken guard screaming, “However I am, I’m still human!”  It is said three guards and a janitor finally regained control and thus depositing Mania somewhere deep within the bowels of Sanity.

At night, seconds after bedroom lights dim, from somewhere very near or very far, Sanity faintly hears Mania’s outcry, “However I am, I’m still human . . . “ascottishgirl

The Time Spent To Read This Post, Equals The Time You Have To Save Your Life

Back in 2008 when the shit storm incinerated the first 20 years of my adulthood, I made an oath while dragging what’s left of a . . . of a bespoke walking stick through four inches of gray ash – some sizeable went aloft and rode a breeze – only to land in some other year; this oath was directed at loss, or better, surviving loss which is always, always more painful than the combustion of mortality which is hard-wired to flee extinction.

Appointed to this life: Two tiny, perpendicular scratches amidst millions of other’s noting everyone’s start and finish on (what we’d like to believe) linear straight-edge of time. And my time – time as living – a selfish amalgamation of loneliness, caution, exposure, intimacy, maturity, judgement, patience, learning, strife, letters, confessions, achievement, and the likely propagation of another generation or the unlikely dog-eared page noting a dead end by a period placed unerringly after the last letter of the last name annotating The End, A Willful Extinction.  The simple decision to stop production thus beholden to past generations, or, the decision of propagation thus bound to the future.

We’re putting a stop to this tributary of our bloodline; my older brother never purposely or haphazardly discovered the merits of fatherhood, and I, being of the gay-persuasion fell in-love when fatherhood and matrimony were simply off-limits; thusly denying my partner and I any marginal hope to have children.  My partner yearned to have a child, Jack (because I simply grew tired of our constant referral to “It”), but by the time the stork delivered to same-sex households, I, in all honesty, was too old and too tired and too responsible to entertain my partner’s fundamental need to nurture.  My father was well beyond my reach; that life, that engaging and interested life, was at least a decade before I consciously understood that I was bereft of any gargantuan, mitt-like hand to hold.  And that sadness burrowed deep, deeper than any other heretofore denial ever tunneled.  And honesty foretold of my family’s dearth in the health department by my adult-life diagnosis of a mental illness, a disease, not a sickness or an infection or a fever but a disease, not an alien landing, not a vampire, and not a plague, but a disease nonetheless. Mental illness is handled, not treated but handled by this nation’s body politic.  It’s a dispassionate and treacherous handling, like the negotiating cop that placated the felon’s demands until one, perfectly aimed .32 caliber round stops the demands. “They” know how to dilute the alleged discrimination; the mistreatment of patients in county facilities;  blaming us, the patients, for their on-going ignorance and antiquated seclusion as a “well-informed, empathetic, and public safety response” to the irrational and grossly illogical . . . blah-blah-blah. . . Um, hello, hello? (is this thing on?) mental illness is a disease as bona fide as cancer or chronic kidney failure (except mental illness lacks a “celebrity endorsement).

And yet, we’re not alone: patients-in-general have devolved into a 15-minute generic; that is, the disappearance of importance, the disinterest of ailments, suffering, and cause.  Today’s Western Medicine Patient has become an Accounts Receivable entry in the ledger; a doctor’s statistic of efficiency; appointment number 58.  We as patients have been reduced to a test result followed by a prescription or passed along like a troublesome foster child to a series of specialists and more tests and more prescriptions.

It’s a cold and alienating model of efficiency and profit, and we, the patients, the commodity are fought over by insurers and institutions chanting “To Hell With Life!”

One Step Forward, Two Steps Back

adepressedgal

A few weeks ago I was incapable of simply managing daily routines such as bathing; I couldn’t process dual stimuli so if I was brushing my teeth and a faucet was turned on my attention went to the running water and my brushing slowed to a stop as though someone had killed the power. There was no conscious thought besides a gnawing, chewing darkness as though black velvet curtains had been suddenly drawn, shutting out the noonday sun. If I was present I was only present to the fact that I had, almost immediately fallen down a deep tunnel of which there was no light and no escape and no orientation. Or better, as though I had been swallowed by the immediate mud-slide of my life and in complete darkness and suffocation I simply held on to the one hope that maybe my prescription would act as a breathing tube offering me much needed oxygen as Nick, my psychiatrist and friends and family kept begging for me to hold on as help was on the way.

Two days ago I traveled north to Milwaukee to spend a couple of days with my older brother. We sat for nine hours the first day and six hours the next simply talking. Well, I talked and in a profound gesture of brotherhood generosity he listened interjecting sparingly opinions. It was an exhaasadguyusting experience met with fatigue, resistance and weeping, but I plowed through years of illumination, insights and epiphanies. It was the first time that I was able to track the experiences as they evolved much like tracking a lion or bear by using their footprints in a densely green forest. It was the first time that I was able to collect and sort, catch and dissect, speak and understand a monumental array of thoughts, failed expectations, compromises, distance and pain. My life for the past three years had been laid out before me like a table at Thanksgiving; every piece in its place awaiting their purpose.

Each day my energy has slowly begun to return and I grow stronger. I am still wobbly and use the assistance of a cane to walk; my gait is slow as I amble to the post-box or to the doctor; I often lean upon it when I tire or grab a hold of a fence or the arm of Nick.

But the most important, painful, and fool hardy admission was that I had erected my life cantilevered and precipitously atop a ravine simply adepressedman1for the view.  Then one evening a mud-slide swallowed me, my partner and his family, my career and others at work, my family and friends.   And now, standing at the base of change, the annihilation of my overlooked life, I now stand alone before this devastation, try to catch a glimpse of any familiar object in order to delay the inevitable: to once again try to salvage any pain my uncaged manic self inflicted

The Brain Breakdown

abrain

A psychiatrist offered this analogy:

Your brain is like a computer which has a fixed amount of memory.

When your brain is occupied trying to process depression there’s a fixed amount available to use to process other activities, say memory or long division.  Eventually, as you heal, more memory is made available to concentration or routines or interest in life or, in my case, facing the ashen landscape called life to which a debilitating, manic, and, calamitous event crippled my job, my family, and my spouse.

abrain2

 

A Recent Visit With An Old Journal (July-September, 2008)

astormI do know how it happened, this convergence of the perfect storm, but the why I set it in motion is still a mystery to me. My feelings of absolute worthlessness have been building for years; starting much like the birth of a tsunami deep in some crevice in the ocean, a shifting of my inner tectonic plates, natural I suppose in the grind of life, but this shift caused great, unpredictable movement of the seas of my life which, by all accounts rose higher, and deeper, and soon engulfed the tiny town of my life, built, I suppose foolishly too close to the shore.

And then it came, this huge wave and friends and lovers fled. I on the other hand, all too well aware stood steadfast in its path. It washed over awaveme, this wave, crushing me against the only world I knew now, that which was beneath my feet. Gripping the sand I held firm, never certain that as it receded, that it would not pull me far, far out to sea.

Gradually it did retreat and once again the sun broke the surface and I lay gasping, choking on air which days before had given life and now condemns me to deal with this devastation.

I had a deep sense that not all was okay with me. I often complained of a dark gnawing I had felt, or heard in my mind. I always thought that it was my creative self scratching to get out in the form of writing. But now I wonder if indeed it was my inner self pleading for help. I could never articulate it sufficiently to those around me, nor did I ever think it was truly a cry for help. Until this week when, what I thought was my tidy little world fell absolutely apart. It was this week when I was diagnosed with major depression.

aquietzone2And from what I now understand it is taking a very predictable course complete with dark patches, rough zones, drifting away from reality, but the one part which I cannot fathom is my inability to be stimulated by more than one thing at a time. For instance, I cannot tolerate music playing and talking; I cannot tolerate stress; I cannot tolerate anger or anything except calm. If I sense more than one thing at a time I shut down and go to a quiet place.

I suspect it all fell apart when it all came together; a perfect storm as I have said; a convergence of three wholly separate, yet tumultuous events which I set in motion.

I had been in a loving 23 year relationship. We had all the trappings of a solid relationship: jobs, cars, cat, home, garden, money, retirement. But something was sorely lacking. Me. I wasn’t in it any longer. I couldn’t be in it. Being in it was too painful for me. The hurt which started as aloverskissingsuspicion around my drinking and drug abuse quickly cascaded into a kind of secret identity which I couldn’t share with him for fear of reprisal. I needed the drugs and alcohol to buffer the deepening sadness of my life. I didn’t want to face, didn’t know how to face this gnawing, this scratching which would never quiet on its own. The only way to silence it was through sleep, inebriation or a Vicodin high.

I also had a very romantic side which died when my partner no longer accepted my tokens of affection. It’s not that he didn’t want them, but they grew silly or unneeded or immaterial or expensive or, even I suppose worthless. Aren’t these tokens of affection best saved for times of seduction or apology or bereavement? And so into the roll-top desk of my life I placed this need to “show” my affection in the drawer called “get to later” right next to my sexual desires, overwhelming need for affection and self-worth. I simply closed the drawer and drew down the lid patting those things adieu. I knew they’d be withdrawn at some later date, when the amour would willingly accept my advances.

Should I have simply ignored his requests to cease and continued my gifts? Perhaps. But our finances had become so entwined that he would have known how much I had spent of these trinkets and he would’ve been cross. Could I have paid cash? Of course, I suppose, but when tokens of affection aren’t valued, the value plummets, the surprise ebbs, the feeling I get wanes. I learned to simply file it away.

I knew that our relationship had weathered many storms; it was built strong; based on honesty and open communication. But shouldn’t every abiggameman have a secret or two? A trinket of conquest placed deeply into a suit pocket? An amulet to ward off demons? A trophy? Hung handsomely on the wall? Hadn’t all my friends had trophies? Yes! Oh, yes, they had! Not one friend that I know has ever been in a relationship as long as ours without the occasional dalliance; but mine was different. Mine was a manic affair, built on a foundation of bogs and swampland and prone to sink.  A manic affair is a very dangerous liaison often resulting in collateral damage and repairable of which I did not fully anticipate it’s consequence.

 

 

“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.

Those Damned Little Pills

amanandpill

For the very first time since I swallowed my first 20 mg. tablet of Paxil four-and-a-half years ago, I finally understand why so many people living with mood disorders stop or want to stop ingesting those damned little pills. Those little pills, like slap-happy lovers, amend their  promises of change immediately after they’ve failed you once again.  One more chance?  One more try?  We’re narrowing the field; one day we’ll strike the right chord, just have patience.  Patience?  What patience?  NAMI (National Alliance on Mental Illness) reported that adults who live with serious mental illness die 25 years earlier than other Americans . . .

Imagine yourself standing next to the Greyhound bus to say good-bye to Hope as she takes a window seat, looking at you detached and hopeless2indifferent.  Your worst fear is happening: That Greyhound bus is leaving you utterly Hopeless.  Hopelessness is a loaded .38 in the nightstand on your dad’s side of the bed; hopelessness is impressionable and interested in alternatives; hopelessness implies that the rough-housing and agonizing conflict you’ve accepted as life is all yours, pal, so grab some gloves and climb into the ring!

Eighty-sixed and cast aside, people with mood disorders are often adrift and desperately clutch to any buoyant object to preserve the credo of the awringingdowncast, that missing people like you are rescued.  But there is no rescue.  Or search.  No one even noticed you were gone.  But then serendipity zips past on her jet-ski waving and reassuring her return. Immediately you squeeze and squeeze again until every bit of blue sky is wrung from her fly by.  You weave strands of hope into bonds of promises and cling to them for their six-week trial, hoping your wholeheartedness created the perfect environment for the mood stabilizing drug to speed down your arterial on-ramp and slide into your bloodstream, easy-sneezy!

Nope.  Nothing.  Nada.  That bitch Hope and her batty cousin, Serendipity played you once again for the hapless Sad Sack, the lunatic adrugcompdesperate for clemency, the believer of broken promises in the form of a pill.  Those damned little pills!  The pharmaceutical industry’s great hoax endorsed by psychiatrist’s, dispensed by Pharmacists, and dutifully swallowed with some water and a handful of hope.  Hope that it’ll take; make a difference; do something; ease my burden; make me laugh.

At my desk 30 minutes after waking, the gravity of hopelessness, fatigue, and apathy plunge my mood underwater; the depressive side of bipolar ajetleads to chronic pleas for the manic cavalry to save the day.  Hold on, I mutter to myself, Just hold on for the pills; they’ll carry you far away from despair. Into my mind’s ground fog I wander further out on the pier when a carefully apportioned packet of dextro-amphetamine salts (think F-22 Raptor Fighter Jet in a mach-1 vertical climb); mood-stabilizer (think the F-22 Raptor running out of gas); and anti-depressant (think glider) are swallowed to ensure mood stability.  Followed by a pair of diuretics to reduce significant edema caused by heart failure and pulmonary hypertension.  At last I down two pain medications and one muscle relaxant for back and knee pain associated with recent weight gain caused by heart failure and venous insufficiency.

How did life become a scene from Soylent Green?  Not so long ago I’d lounge sleepily awaiting the skipping return to bed of my spouse.  Now mycomforter mornings are strict regimens in a very specific sequence to assure all medication has been ingested.  I too, would like nothing more than to flee from this pill-filled merry-go-round so-called Life and run back to that sanctuary of pressed sheets, downy comforters, famished pillows which swallow everything, and quiet, inside-joke laughter reserved for those blessed with wellness.

Instead, every morning I sit at our kitchen table despising those damned little pills.