I love Beaker. He is my spirit-muppet. So very expressive yet simple. He works so hard and means the best; yet, somehow, he always messes things up. Usually as a result of his actions no matter how he tries to avoid such disaster. There are times (few and far between) where the end results are because no one listens to Beaker.
A “super-Earth,” this captivated my attention with tales of an atmosphere of hydrogen and helium and an orbit of the sun that could take 15,000 Earth years. This “planet” was discovered via mathematical modeling and astronomical observations.
To become 1 year old on this planet would really be something to us Earth dwellers! The denizens of this hypothetical planet would also sound funny to us (based on the assumption of how a human sounds when breathing helium).
The Universe is unfathomably vast! We are so infinitesimally small in the big picture, yet our simple perceptions trick us in to believing we are the center of existence.
Alas, I have not been lost at sea or anything exotic such as all that. It sounds like fun and I could use such an adventure. No. I merely realized today that I have failed to post a single thing to my blog since August.
For this, I apologise.
Nothing exciting has really been happening as of late. Just day-to-day life. I wake up, play with my 3 year old daughter, exchange pleasantries with my 17 year old son (I can’t believe he’s that old already, my gawd!), go to work, come home, bathe, pass out.
The pain is real, people. The pain is real. LOL
Honestly, and forsooth, I will effort to be more active in sharing insights and observations, findings, and other such joys. Until then, party on!
As many know, and most are just now learning, I work in maintenance at a Super-Walmart. The job can be disgusting, but mostly it often provides fodder for ponderance. Not only are the people curious in behavior and mere existence, but revelations are made on a near daily basis.
One thing I have found is that the men’s urinal is often used to discard all sorts of stuff (I tried to find a different word for “stuff” but it’s too perfect a signifier of what I find); the most frustrating I often find being wads of chaw.
A urinal is a sanitary plumbing fixture for urination only
Gents – the urinal is not a spittoon. As quoted from Wikipedia above, the urinal is for urination only. It is not a cuspidor for your chaw, gum, or what have you.
What happens when chaw is disposed of in a urinal? Unseemly things such as clogged pipes and evacuated liquids everywhere.
Granted, this does indeed give me something to do but keep in mind – I have to put my hands in to that shit.
No number of layers of gloves or amount of bleach protects us from feeling unclean after such a task.
This is standard call and response at work for me. On days where I’m feeling frisky, I will respond with “I’m Fantastic!” Today, it was the quick response and end of expectations for me to talk response of ” I’m doing all right.” With a smile on my face I listen to the litany of complaints and woe-is-me.
In reality? I’m f-ah-reeking the fuck out.
I was having anxiety attack after panic attack and so forth… My knee kept dislocating and it level 7 hurt… My schizophrenia and paranoia was in high alert today… Top this off with hot flashes and painful gas that kept cramping my abdomen and shoulders… I was a mess today.
Yes. I took my meds.
I must have kept a pretty cool exterior because everyone was chill in response to me. I was a good worker bee, smiling and not complaining.
In retrospect, I’m sort of proud of myself! Go me!
Today, I learned the term “xylophile” – a lover of forests or woods.
I grew up around the redwoods of California. The smell, sounds, air, everything about these forests make me feel whole.
Years back, we found ourselves in Emmett, ID. A small quaint town, but no groups of trees with which to commune. I grew very depressed and took to late night walks (it was mid-summer and hot during the days).
One night, upon returning from a walk and commenting on how many stars I could see, my husband’s brilliance shone bright. He proceeds to tell me that no matter where I , I can ALWAYS find a forest. He called the stars “sky trees” and elucidated that I may not have a terra-type forest, but there is always a forest of stars above.
Since this adjustment in my perception, I have become an amateur astronomer. Never am I without shinrinroku!
My husband wrote the following article as a gift for our 22nd anniversary. It best describes some of the difficulties he and I work with in our lives. Enjoy!
22 Years an Homage to my wife.
22 years ago today…
Twenty two years… Two decades and two years ago…. I married one of this world’s most outstanding women. Truly… Though we had met only three weeks before..
Wait. To understand the significance of this, we need to go back a day before that. In the late evening at a Health Service (HS) training center for the armed service I was in, I lay on the floor of my room in a kind of pain I have never sufficiently been able to describe in human words. Imagine being burned alive and shocked with a tazer at the same time. For those of you who weren’t 1600’s Salem witches, or commonly tazed, think of the last time you burned your hand on the stove. That would have been nice – I rate it as around level 2 of 10 pain. Now, imagine that you can’t pull away and it feels as if your flesh is blackening to the bone. Now for the kicker – picture you’re me – a 6’4” man who is not unused to pain. You’re in this kind of pain; it has long ago brought you to your knees, then to the floor; now all you can do is lay there and shake – sweating from the effort of it in a fetal position. Recall the worst pain you have ever felt – that threshold passed half an hour ago, and you’re wishing that you could return to that threshold of lesser pain; you’re begging anyone to end the pain. The twist in this tale – there is no fire. No injury. In fact, as far as anyone can see, there is nothing at all wrong and no reason it should happen at all. Not an hour ago, you were laughing and hooting with your buddies; all of whom, the best bright future of the armed forces Heath Services, scattered like cockroaches the moment it started. Except for one. The pariah. The lone reservist, and at that, one of the few girls in the class. The one the tough burly guys in class call little girl behind her back. A calm, almost stoic look, sits stone-like on her face. A look and manner one might attribute to a veteran combat medic, not some first month newbie. She has grasped your hand as you make futile attempts not to cry out in pain. Your grip that of desperation, knuckles white, squeezing so hard she is breaking the laws of physics by not allowing you to shatter the bones of her hand as you squeeze harder and harder. When enlisting, like most starry eyed recruits, I had a sort of Post WW2 “Bridge Over the River Quai” idealistic view of what I would want my comrades in arms to be. The guy you want at your side in a fox hole, the guy who without thoughts of himself drags you to safety, and there SHE was. No pity. No confusion. No other option in her mind but to sit by her fellow soldier no matter the situation. For two hours, she sat there never saying a word, not judging, her demeanor saying nothing but, “I’ve got your back tell me what I can do.” Long after the musclebound men, anyone whom could have easily bench-pressed her weight, abandoned their gawking positions outside in the hallway had gone on their way, she sat lone vigil watching over her stricken fellow. Into the depths of my darkest night, she sat. A truly legend-worthy soldier she was. Her actions shining examples of duty to one’s unit, and honor in one’s actions.
So – move forward a day to exactly 22 years ago, and you bet your sweet-bippy, when that fiery redhead grabbed my hand and pulled me toward ‘Cupid’s Chapel of Love’ taking me up on my offer to be her partner for life, telling me we “should get married here and now… it will freak out all the guys in the unit who have been teasing us about how we hang out we should be married.” You bet I didn’t even hesitate. Not wearing tux and white dress to be husband and wife, not to exchange a metal band to join in the holy.. blah blah blah. Me in my torn up fishing cut-off Levy’s, her in her civy combat boots and borrowed shirt with huge milkshake stain down the front. The time-worn old holy woman in her holy robes, gave us the exact ceremony our marriage begged for.
It was as follows to the last detail: She glanced to the back of the room, at the chapel secretary, nodding to ensure she was ready to witness. The holy woman looked at me with stern eyes – a cross between your grandma and the school principal; a look I’m sure gave more than one Reno wedding a second thought. But I was resolute. I knew whether a fox hole, civilian office building, Thanksgiving dinner, or Grandkids – this was the soul I wanted by my side.
The wizened holy woman must have seen it because her look softened into a broad grin.
“DO you!” was all she said to me “Without Doubt!” I chimed before she even finished.
“DO you?” she asked the one at my side. “Yes Ma’am’ she replied instantly.
“You are, it’s done.” the old holy woman said, giving a wide wave of her robed hand, as if casting some ancient spell. And that was it.
12 words. No grandeur, no cake, no flowers. But honestly, as 22 amazing years can attest, it didn’t need to be more.
I have told you all this merely to set the stage. It’s incredibly important to the rest of this story because this is a story about the woman who has been by my side through thick and thin for 22 years. A dark pall hangs in our future, and before we are encompassed by the imminent storm – it is my hope.. no, not that… my honor to introduce you to an amazing person.
Because, in this life, we seldom meet truly extraordinary people. Though I may never be able to get the Queen of England to grant her a title, or convince Time magazine to put her on the cover, I hope when I’m done with this tale – you too will believe they should.
Keep in mind the following (these things make everything that follows all the more awe-inspiring):
1. We met three weeks before that day in the chapel. When I saw her cornered by a drunken letch, in a civilian bar, near the base we were both stationed at. The portly alcohol pickled man didn’t know what he was getting himself in to. As a member of her company, I stepped in – not for her sake, but for his. HE threatened to get his buddies and come back. So she and I laughed at his drunken threat, left the bar, bought a case of beer and drove off. As a side-note we found so many other things to occupy ourselves that we never drank the beer. In fact, two years later we gave it away as it was taking up space. Don’t give me your ‘Love at First Sight’ – love is for foppish Victorians and high school cheerleaders. For us, from the moment we walked away from that short sad balding man, and for the next 22 years, WE simply are. For my part, I have a saying every night before I fall asleep beside her: “This is the second best part of the day.” Many have assumed what the first best is, but for the sake of this tale I will enlighten you: “The best part of every day is waking up, still married to this incredible soul.”
2. As you will note by our marriage ceremony, though assumptions may be made, the woman I wed never said ‘sickness and health, good and bad..” and what ever other nonsense people make each other promise for the fundamental reason I never asked her to be my wife. Time and ease of use have it so we use those titles around simple folk. Our walking the roads of the future was a given the moment we met. When I asked her to be my partner for life we agreed only under three rules: A) The door to leave is always open, but it’s one way. Drama on and off is pointless and damaging to a long term friendship. B) I don’t care who you dance with tonight as long as you wake up at my side in the morning. Drama and jealousy ruin more friendships than any other. And finally C) Communicate! Don’t go to bed angry! I swear in 22 years I can count on one hand the total number of real fights we have had. And only once, really truly, did we stand on the verge of separating. I misunderstood a comment she made and asked her “Do you mind being tied down (I’m thinking relationship-wise).” She, very shocked, responded “Hell Yeah! (she’s thinking bondage)” Oh yeah, it was hilarious a few hours later with my bag packed at the door when we realized the mistake….
Ok. I hope you have a basic understanding of who WE are, where this all started, and what would be for 22 of the best years of my life. As amazing as this beginning was, the night before we married was a foreshadowing of a decades long doom. The reason why I write this elegy is in hopes that perhaps some of you will be inspired by this incredible woman. While the nay-sayers will, after decades of vituperation, realize their error in perceptions of her and us, and in hope that with the new doom that lays before us in the next few weeks, some of you will tell her how incredible she is. Hey! Maybe someone who reads this knows the Queen!
Now allow me to introduce you to the life and times and unnecessarily arduous story of a truly exceptional human. Her name – J. Bea Okkerse (Anderson replaced her maiden name after the chapel incident)
That is where it started. I won’t trouble you with the three weeks between the bar and the chapel. They were carefree times. If you wish to hear about them, I’m happy to share a few tales; but, in truth, as I have said, this is a story about a truly exceptional human. Truly great people aren’t made or even forged in fire as some may believe. The inescapable reality is that those few, the handful which humanity has been graced with, simply ARE. Argue nature vs. nurture all you want. Having acted as witness, I assure you the truly great will rise above – despite adversity or privilege – they can’t help themselves. The truly exceptional never think or consider a difficulty – they simply do because it’s so ingrained in their nature. They step forward into fire, flame, storm, or deepest darkest night, because it is who they are.
As the health services class progressed, there were a few hitches. With her as my ally, study partner, and the one on my shoulder (no matter the fight) – it was pretty amazing. She challenged herself, and me, diligently studied late in to each night. Our favorite haunts being local diners and Red Lobster, we came out the other side fully qualified Armed Forces Corpsmen and EMTs. There was once a picture I had taken, during triage training, of her. It was lost when we became homeless recently, but I wish you could have seen it. There she stood, on a small rise, tendrils of smoke rising from the area around her, Corpsmen rushing around her, her ruby red hair a flaming fire blowing in the dawn breeze, that combat harden veteran medic look on her face while a shout formed on her lips – all these huge men scurrying around at her every order. Truly great leaders are given leadership by those who realize they are worthy. In that moment, it was obvious that not a single man present did not recognize her as worthy. It was an epic picture unfortunately lost to the ages. I hope when you’re done reading this narrative, this is the figure she will strike in your mind; the amazing irony being she would rather not be seen as such. Again, the truly groundbreaking and world-moving people in history never sought such acclaim.
After Health Service School (here after referred to as HS school), I was given my pick of my next station. A resent very severe illness, which we would much later learn was the cause of the disability that would torment me, had landed me in a navel hospital for three weeks. When I returned, they gave me any choice I wanted. My wife, being a reservist, would simply be restationed to the nearest reserve station to mine. I chose Juneau, Alaska. As if that wasn’t amazing enough, my new partner in crime was as thrilled as I was! For one brief moment the future was boundless and the world our oyster. It was an easy life plan – I would complete my goal of being career military, 20 years or more is all I wanted, and the fact my new wife supported and encouraged it made it just that much better.
Unlike her, I have not always conducted myself as one should in the presence of the truly great. In darker times to come, quite the contrary I am ashamed to say. However, there is in her eyes, one moment, which she would cause me great pain if I was remiss in adding to this tale. Where every day she dazzles me, in her eyes it took only one act for me to prove, no matter the trials or the cost, I was worth every drop of blood sweat or tears. It happened when we went to tell my parents about or elopement. As you can imagine, they were more than a bit put out. Very long weekend story short: as we stood with my obscenely rich parents by the pool in the backyard of the home I grew up in, my mother having already vehemently, raucously, and repeatedly expressed her distain for this woman (who, to them, being of a more humble background, would never be good enough for our family). My mother laid down an ultimatum: then and there, I was to choose between this girl and my family. The threat of being disowned barely passed her lips when I had my friend’s hand in mine and walked out. For all intents and purposes, my mother might have asked me to give up my right arm. While, to my wife, this is a moment I showed her I would always stand by her. The truth is, this girl of meager upbringing in the face of my elitist upper-class CEO father (who is quite an imposing figure and my mother a woman who scares even my father) never even flinched as they assaulted her.
Truth be told, that was in fact the pivotal moment: were she and I walked into the future hand-in-hand. I was now disowned from my family, and her mother irate and burning with hatred for me – the man who stole her little girl. All this! And before anyone realized the horrible damage my recent illness had wrought upon me. Over the decades, my wife has incredibly and patiently opened a tenuous dialogue with our estranged parents.
The pain in my head didn’t start to really be a problem until shortly after we arrived at our new posting in the great white north. Salmon fishing in the picturesque Alaskan wilds almost made it bearable. But, as anyone with severe nerve damage will tell you, the daily almost background ache and pain is nothing compared to a bona fide pain event. My second major acute pain attack came in the middle of the workday. Let me add some perspective as perception is everything. In my new reality, my level 1, at this point, is a sun burn, where-as level 10 was defined that night before we married. To most, level 10 is the pain associated with a major injury, such as a broken bone, while that might reach a level 7 for me, in comparison.
Ok continuing.. Mid-work day, walking down the hall to see a patient, I pass a coworker and suddenly the mild ache that was now ever present, instantly becomes face-melting alien death ray and I hit the ground like a sack of potatoes. Again, and your going to hear this a lot (which is also why I am sharing it in Invisible Disability), there was no overt or tangible reason, no outward sign or anything to give anyone even the slightest hint there is a problem. Just me screaming on the ground. So, and I’m not kidding, my Chief (military rank of my supervisor) walks up and taps me with his boot and says ‘Don’t be a pansy. Get up. Stop crying.’ I, of course, am incapacitated as I racked by this new level 10 pain event. Callously, he sends two guys to unceremoniously heft me under the arms and slam me on an operating table in a back operating room to get me out of site. Later, my wife relayed to me that I could be clearly heard throughout the whole clinic. And so it began. Having given up on dealing with me, thinking I’m… I don’t know honestly what they thought. I’m sure, among the many beratements she received for steadfastedly insisting on remaining by my side (rather than bug-out, as was expected of her), the term “crazy” was among the more civil insults tossed at my wife. This happened the first week after reporting,
then again, two weeks later – almost exact thing happens again. This time, my military coworkers are just plain nasty; telling me to suck it up, grow up, etc. Basically, there’s nothing they can quantitate, nothing they can see or measure, and at this point we don’t even know what has caused it nor why it was happening. As I look back, it seems, of the two of us, I had it easy as I writhed around in pain, in a dark operating room, in the back of the clinic. My wife, that wonderful woman, is about to come face to face with what I have come to see as the true horror of an invisible disability: as she went about her daily tasks, she was often affronted with (at its core) discriminatory attitude, she was verbally assaulted by the entire team (I really want to call it a lynch mob). She takes it in stride. Honestly? I couldn’t have been able to display such elegant composure. Even when a doctor (an officer) came in from lunch, he stopped in the door and exclaimed, ‘Oh God! Who is that? We need to get them help immediately.’ My very concerned wife informs him that it’s me and turns to lead the doctor in my direction. He dispassionately hissed, “Oh,” as he glared disapprovingly at my wife and proceeded to vindictively walk in opposite direction. I don’t know how she did it. Yet another trait of extraordinary people is composure even in the face of overwhelming addiversity. Personally, as a corpsman, it took me about 5 visits before I could identify tell-tale signs that fakers and slackers display. I would have had the heads of each and every corpsman who sat around the break room snacking while someone screamed in pain, regardless of why, especially one of their own. But, unlike me, she knows how to deal with humans in a way very few seem to. In short order, she had the clinic’s head doctor examining me. Despite the increasing ridicule, and openly repugnant treatment she was receiving from our new unit, she proceeded with an honest smile and peppy tone and stepped into the breech with no regard for herself. Skillfully, she manipulated the lot of them while displaying measured restraint to the greatest effect, yet only so far as to achieve the optimal outcome. Temperance is another quality of the good and great. I’m sure she could have pushed it, but she recognized the efficacy of using moderation to prevent the situation from becoming convoluted. As the doctor talked at me, the cloud of pain kept my world fuzzy. There stood my wife, no breeze blown hair or smoke, yet striking a figure that attained (I avoid a word like demanded or deserved, because she doesn’t have to. She is too nice, to right, and way smarter than any two of them combined) respect and inspired the lackadaisical ones to action. Even SunZu would have stood slack jawed at the little redhead who just fought a battle against a superior force and won so completely that she didn’t realize it; yet, no pride or other such human bunk, tainted her quiddity – there was only determined concentration on the task at hand.
I keep telling you how extraordinary she is, this amazing friend. I offer this last divergent anecdote to further exhibit yet another gold star with pixie dust on the first year of our journey. Late Autumn in Alaska, as cold days get almost supernaturally short, but before the sun abandons the land to the deep night of Winter, we went deer hunting. We, like so many others, went out before the rise of the sun. A light dust of snow shrouded everything in just enough to bring about that surreal half-silence when snow dampens the echoes of life. We hiked into the deep woods of the North. Prior my disability, my nickname was “Outback” because I was very at home in the woods and always prepared. As such, we were well provisioned – my pack full of any conceivable survival implement. I knew better than to let the serene beauty of the woods fool me into complacence. The universe is not without a perverse sense of humor. Well planned and timed, I stopped mid-sun and turned to my following wife who was playing with the snow on the branches to tell her time to head home. As I pivoted, my foot lost purchase, and with a loud crack my ankle gave way. Alaska accentuating that she had won began a truly amazing snow storm. Even with all my careful planning and prep there was a moment that I was certain I was a dead man, Despite my best efforts, I could not put weight on my leg to walk to safety. But neither myself, nor The Great Alaskan North, factored in one variable: my constant companion. With the casual unfazed confidence I had come to admire about her, she stepped up to me, as I prepared in my head my “just leave me here and go get help, there’s no sense in both of us dying in the subzero night” speech. She grabbed my shoulder, rolled me over, pulled off my pack and dumped the entirety of its contents into the newly fallen snow. Forgotten to me in the bottom of the pack was a rolled up 1950’s Army body bag I had liberated from a trash bin years before. I’m sure my jaw went slack as I, truly impressed, assumed she was going to make a lean-to or perhaps construct condominiums in that clearing. Though I am completely confident she could have, instead, she laid it out next to me and in a quick motion rolled me onto it. She promptly piled all my assorted gear around my legs. Smiled at me in a fashion, which, if I had ever seen her display a modicum of ego, might have been mistaken it as an almost “I win vs. The North” style grin and proceeded to grab the handles located by my head. For the next 6 hours, despite the quickly deepening snow, white-out conditions, and approaching night – nary a complaint, and to my knowledge, not even a glance at a compass, this amazing woman drug my broken self, though I easily outweighed her by 80 pounds, out of the woods and right to the road where we had parked. We emerged no more than 50 feet from my waiting truck.
If this was all of it, the whole tale.. if 21 years ago I told you only this, I would have even then challenged anyone to disagree with my assertion that this person, this incredible human soul, was truly a thing anyone could hold in awe. A person anyone could look to as inspiration. Make no mistake, Alaska is no joke. If given half a chance, any wilderness will kill you. The wintery North will do it and bury your bones. Yet, this city-girl, whose idea of rough camping meant an hour drive to pick up ice cream sandwiches after a day of canoeing, stepped up and in a feat right out of some Hollywood movie, took no notice that the entire world was trying to kill her. In the middle of a blizzard, she accepted the challenge of the North and prevailed. And I kid you not – she did it skipping along the way.
I have to, at this moment, truncate this story. In short, because this narrative hasn’t even covered one year of the last twenty two. My first draft of this, to this point sits, at 24 pages. This I whittled down to four on my word document having already taken out a few bits I felt really would help you understand why this woman, despite any judgement you might make, could so very easily stand next to the greatest humans you could name, and even in her way put a few of them to shame. I steal a quote from JMS’s Babylon 5 to explain why, it’s a statement which defines the soul of this human and why, despite the horrible derogatory things so many have said about her, even the greatest of humanity – Gandhi, Mandela, or Churchill – even they would hazard a bow of respect to her as she walked among them as an equal:
“How do you know the chosen ones? No greater love hath a man than he lay down his life for his brother. Not for millions, not for glory, not for fame. For one person, in the dark, were no one will ever know, or see.”
Remember the fox hole I mentioned earlier? And that buddy that’s got your back who would, without a thought, in the middle of the night throw themselves on a grenade. This sacrifice, selfless without thought or hesitation and knowing the cost, willingly gives their own life, for no reason other than because it will save yours. Sticking with this poignant analogy, my wife of not even a year, a woman my parents judged unworthy, has already thrown herself on no less than three grenades by my count. Keep in mind, at this point there is no reason, no sign, or anything to show my condition exists. Honestly, even she has no reason to think anything other than I’m some crazy guy, and I’m faking this pain for.. Gods who knows why anyone would fake it, but there is no reason she doesn’t save herself a lot of grief and walk away. Yet she hasn’t at this point, nor would she over the many years to follow since then even consider walking away. Moreover, she has already, and will countless more times, throw herself in the line of hazard to save me even the slightest increase in discomfort. And need i remind you, with noone to see, in the cold dark,when common sence would tell most to leave the guy with the broken ankle and hurry to safty, it never crossed her mind to not render aid.
Through the first years as it became apparent something was really wrong with me, it would get so much worse. Through 5 superfluous surgeries, countless doctors trying anything to relieve the pain that washes over me on a regular basis, from a promising military career destroyed by a commanding officer who coerced me into signing paperwork which would not only get me discharged from the service (though honorably, it would disqualify me from receiving any military benefits including any compensation what so ever including no VA despite the fact once diagnosed the cause rested solely on the military). In fact, as I lost job after job – because, let’s face it – no matter how hard I work, no work ethic trumps a guy who might collapse at any time, or miss days due to a condition which would go undiagnosed for 15 years.
I wish there was a succinct way to sum up the next two decades. For my wife’s sake, I wish I could list every time she, without concern for her own discomfort, made a sacrifice for no reason other than it made someone else’s life better. But I think there isn’t enough memory on the internet, and yet despite it all, she’s stepped up to every challenge and met it in truly epic fashion. As I’m sure many disabled know, it was a losing battle. Our friends and family unrelentingly chastised her as naïve as doctor after doctor and mind-numbingly expensive test after test failed to diagnose my condition. In their perspective it was abundantly clear that if it hadn’t been diagnosed by now it didn’t exist and I was not only taking advantage of her, but was also mentally and likely physically abusing her.
In feats of epic diplomacy woven by my wife, even our families gave small amounts of support; however, even these resources, though hard won, dwindled. Yet, years after, once even I had given up, she soldiered on in prodigious fashion finding new and different doctors and resources in efforts that someone would finally identify the invisible force that hobbled me. Any money we had saved was long since gone. First my brother drained our accounts to buy drugs while I was in hospital for yet another surgery. Later, my wife’s sister borrowed over six thousand dollars from us and has even yet to settle her debt. After many years, she has paid back less than a hundred dollars; further, she has, with almost rude reverence, insisted she’s already cleared the debt. Yet my wife’s income was spent as soon as she got it to bigger medical bills. Because this is another amazing, albeit annoying quality which my wife shares with the amazing humans – altruistic charity. If we have fifteen dollars, and someone in need needs a ten spot, if it won’t cause us harm she will gladly lend it, and never ask for it back.
A ray of sun was granted us when our son was born.
Then as, I was ready to give up hope entirely, having endured the fifth and final major surgery done to try to affect my condition, I had been swept over by the acute pain once more. Not even fully healed from the surgery, something unimaginable happened: the doctor I had just spent five figures paying for a surgery which had no effect other than increasing our mounting debt had a revelation. Personally, I wouldn’t have even gone. With unbecoming childlike grumbling, she dragged me back to his office. As I saw it – so once again I could sit in front of a man I honestly expected would say the same thing the last (I don’t know how many doctors.. gods I lost count a decade ago..) had said: “Well we just don’t know. We can run more tests and try more [insert BS here].” Honestly, I was already long past the end of my rope. I was only here because, after 15 years, a woman I honestly don’t feel worthy of being in same room with still had hope. Yet another quality of greatness – the ability to inspire. Volumes have been written about our greatest leaders who have inspired hope. I doubt many humans have felt as completely bereft of hope as I, when again I paid a man enough to buy two new cars to carve out my face with completely no effect. Yet she fanned even in my darkest most hopeless hour a flame that moved me to take one more step when I could no longer see any path before me. There we sat, the confounded doctor staring at me. I could see it in his eyes. My chest tightened with apprehension as I awaited the dreaded ‘if that didn’t work your crazy making things up’ speech. In that moment, he glanced at my wife, the breath he had taken in to speak stopped in his throat, and a look I was completely unfamiliar with furrowed his brow. He bolted from his chair, excused himself, and vanished, leaving us alone in his office for a time. He came back with a flourish, like some movie hero who discovered some long lost secret to save the day. Handing my wife a prescription note he ushered us out with the instructions to call him in a few weeks and let him know if this has any effect.
In short order, within a week, I can’t explain it, the pain I had grown so accustomed to changed. It didn’t go away, but like putting a shirt over a sunburn, it was tempered. The cascade of events that followed literally changed my life. Within a month, I had seen a further dozen doctors, slowly working up the chain of command as it were which culminated in me sitting, having been subjected to a dozen screenings by three assistants, in the office on the Dean of Neurology at the state medical college. I mean this was the guy the smartest doctors in the field went to when they had a problem. My actual visit with him was relatively brief as he quickly, but excitedly, explained my condition. He further explained what it was, how it happened, and that honestly there was very little they could do aside from heavy medication and pain management, which he stated would never provide me more than 30% relief in ideal conditions. It may sound bad to you, but I hadn’t heard better news in over a decade.
What do you say to that? An odyssey of pain and financial ruin spanning a decade and a half, disowned by my family, my father, one of the few living people I then and now look up to had labeled me a lazy loser (using a particular family insult that cut me more deeply than anything anyone had then or since said to me). Watching this incredible woman fight every day with her every breathe, while her family denigrated her character with insults and other activities designed to make her life so miserable she had no choice but to leave me for her own wellbeing. Yet it isn’t in her nature to give in or give up just because lesser people want her to. The one defining reason her family tormented her so was centered on the fact for all this time I was stricken by something undefined, unseen, and unknown. And this man stood there with literally every answer we could have hoped for in the long dark of the decade and a half struggle. I really don’t think anything in the universe, this side of physics redefining itself as a wallaby on a ring runner, would have changed our lives more.
It was a reaffirming moment of joy, unmatched in my life, with the single exception of seeing my son emerge into this world. Again, for one short very brief moment, the skies cleared, and we saw the future opened before us – the long dark struggle was over. More importantly, my wife, without whom I never would have reached this point, was – at least in my opinion – vindicated. Finally! All those people who had spent so many years berating her would see she was incredible and had literally single handedly dragged her family through this horror. She never boasted, bragged or I-told-you-so’d, or once asked for anything in return. Come on, at this point in the telling, would you expect anything less of her, than to shine as the best of us? As quickly as possible, we disseminated the news to help everyone understand and familiarize themselves with the diagnosis. We granted our families complete access to all my medical records and doctors so they could address any questions or concerns as completely as possible. After years of countless misdiagnosis and false information which seldom led to anything more than higher medical bills, we knew everyone needed as much solid information as possible. Being, at this point labeled a compulsive liar/drama queen/hypochondriac attention seeker, it was important everyone have every scrap of information at their own fingertips. Finally, my wife and I celebrated, it was over.
Sadly, it was not. In fact, as it would happen, things were going to get so much trying for us. And my wife would once again be tested, quite honestly far beyond human endurance.
As it would happen, recalling my statements pages ago, the most horrible thing about an invisible disability has nothing to do with the disabled. For me, life got a bit better, less pain, better days, and a name to the torment.
Recently, as I’m sure few in the world have missed, the economy is slowly failing. Even my wife, no matter how amazing, can not escape the one simple truth of the last decade. Fewer jobs, less pay, etc. Having worked in the past as an executive secretary, now she can’t even get interviews. Despite knowing what my condition is, the trials have become greater. Our families never, in the years since diagnosis, changed their tune and still act the same. There is no doubt in the fields of medicine, that I have a severe acute case of neuropathy which is everything I’ve said it is. The pain is very real and won’t get better. My wife’s favorite statistic that she’s read in her studies states: this is one of the most painful conditions known to medicine, and most people who have it, end their own lives long before getting properly diagnosed.
I was granted disability, but the judge who ruled on my case stated, without a doubt my disability is worthy of government support. However, he went to say that he would refuse my case – and I would spend in the range of ten years in appeal court system – unless I changed my claim to reflect no income and a decade less time from which it started. In short, giving me a tiny fraction of what I should have actually received. Oh yes, there is even discrimination within the disability system. As such, I make less than minimum wage, with my wife unemployed, with which to support my family of three.
Yet we persevere. Struggling against the rising tides, once living in a decent apartment, our world slowly collapsed, despite my wife’s most valiant efforts – until two years ago when we ended up homeless. When we sought help, our families ignored us. My favorite was my wife’s mom who said she won’t help because my wife needed to learn a lesson. Quite honestly, the lesson, as ever, was nothing more than leave the disabled man, etc. Luck, and my wife spending hours trying to save her family, landed us in a family homeless shelter, then in a HUD apartment in a drug-ridden part of town. As my wife’s work dried up, even that was lost to us. A friend took us in last Fall, I won’t go into that, and a woman who seemed a kindly old lady let us stay in her spare room, in exchange for services. My wife has spent the last months turning the lady’s life around from cleaning up the compulsive hoarding, to hours and hours a week on phones and in appointments getting the woman’s health up to par.
And yet, while my wife slaves to give and help, she was betrayed. I won’t go into it as it is an affront and insult to everything my wife is, not to mention all the hours and effort she has put in around this place. But, the sad short of it is we have to be out by the first of August.
My wife has tried so many things. She tried a go-fund-me drive which netted her only insulting mails and messages – which, in short, say she is a horrible person for supporting a man who is little more than a leech on the welfare system. The hate and discrimination was sad beyond description, all pointed at my wife.
For those who read this, all I can offer is this: broke, blind, and bleeding, I have doubted my wife in the past. Where you and I might see a future bereft of hope, she is the torch that lights the way. I am, for once, confident that (despite the prospect of homelessness, our car being repossessed the same day, and pretty much no way to get to the only place we might find safety) we will marshal forth. I have called my wife my torch, a light in the darkest places, but I promise the one fact that always strikes awe in me is: truly amazing people, no matter the hazards, pains or certainty of doom; those who are truly great humans, ones like my wife, cannot see failure, will not accept loss, and were the rest of us crumple in despair, truly extraordinary people like the woman who dragged me into the chapel two decades past don’t wait for miracles to change the fates or the future. They are the miracle that gives the rest of us drive to step forth into the breech. To be in their presence inspires even the least of us to want to be better.
My final note, to all those who, despite everything, still to this day continue to heap grief on my wonderful partner, I say to you: For Shame. My wife is the best of us, truly an extraordinary human, staying the course of just nastiness for reasons I will never fathom and continuing to berate, denigrate, and quite honestly treat her with such distain, shows only that you are not worthy to judge her. And, as you sit idly by wringing your hands at the train wreck so likely in these next few weeks, where complete and total disintegration of her hard years of work is certainly more likely than not, gnashing your teeth hoping your will will be finally imposed upon her by the shear weight of events. I promise you regardless of where her path leads, she will weather the storm – fiery hair blowing in the breeze kicked up by the flames of a world in collapse, and she will stand fast, truly proving her greatness beyond contestation.
My wife, my soul, my torch – next to you I feel unworthy, for all you have given for 22 years nothing can repay, so I give to you the one thing I can. The knowledge that I saw, regardless of being the sole witness, my life has been enriched simply in the knowing of you. And I will always stand by you as you have me. I look forward to walking the road beside you for the next 58 years, no matter what they bring..