‘When one can taste good health, the world is sweet, one’s eyelids open; when the taste of living makes you vomit, life sours and the eyes are veiled…”
The poet, L. Robuis
Talk about veiled eyes, man, this last round of misery has been a doozie. Yep, got re-infected from the diarrhea, another abscess formed and sickened me and only when it burst and Pia began draining it did my desire to taste what is sweet in life return; until then, all was sickened in me, poisoned again.
I have pounded this putrid horse before, but MRSA abscesses and the resultant sepsis are nightmarish and about the worst experiences I have endured, save my actual injury. As the abscess reaches boiling point, the entire body is poisoned; one cannot eat, drink, even breathe without the threat of nausea, everything once beloved turns revolting, all smells disgust, you feel an agony without limit, coursing the entire sleepless, aching body, and it must be endured to survive, for survival again is at stake and there were moments last Wednesday when the flames of Hades nipped and leapt about me, threatening survival…
I have muscled through the antibiotics again, and I am improving now each day. I am not free of MRSA -perhaps I may have it to the end of my days- and in truth, I am doing all I can to keep its ravages at bay, but I feel better and the poisoned grip of the abating abscess is weakening. I am beginning to smell life’s sweetness again…
~
And yet…
This last Monday, after a session at wound care and as I was getting into my car, a man I’d seen a few times around town, Milton, a paraplegic, rolled up alongside me. “Hey, ain’t you the guy from the rehab meetings? I got a bone to pick with you.”
I wondered what crime I’d committed, but was gracious. “Yeah, I remember you,” I said, reaching out to shake his hand, which he refused. “Nope, I ain’t gonna get sick like you from that staph, and that’s my bitch with you: you been out runnin’ around and you got a staph infection and you probably been givin’ it to other people. You should be more responsible than that, there’s been 7 people died from staph in this county this year.”
Milton went on awhile, ragging wildly about staph and the rumors he’s heard and has bought into; all sorts of untruths that he’s accepted as fact, and now I’m the bad guy for not keeping myself in absolute quarantine until perfectly well. The woman helping me into my car clearly wanted to say something in my defense, but Milton was adamant, until he ran out of gas. I finally cut him off, “Let me get loaded up here first,” which we did and I freed the woman before turning to Milton. I was kind, slow, patient; man, I am just not into fighting lately, and especially with people who can’t…pardon me but can’t reason at a higher order of thought.
“Everybody has staph all about them, and the staph you’re referring to can only affect you if you’re weak or disabled. In my case, whenever I have been infectious, and that’s only when pus is coming from my abscesses, I never go out in public. The meetings where you saw me were times when I wasn’t infectious.” I went on to talk about hand-washing and hygiene and to show my understanding of this near-epidemic. Did no good, I guess.
“Well I just think you should retire from bein’ in front of people. Till you’re cured, you ain’t got nothin’ to say.” He waited, had a glean in his eye like he was expecting a fight. I debated, then decided to let it go. “I’m sorry you think whatever advice and experience I offer is something I shouldn’t do, but/
“No, hell, I appreciate your advice, I learned a lot about this injury and research from you, but you shouldn’t be out publicly, is all.” He turned and left without another word.
He has a point, one I’ve mentioned here before: removing my carcass from the public and finding other means of being an effective advocate. I have felt the pangs of hypocrisy on occasion, lecturing on the cure while remaining un-cured; pontificating towards the bright future while feeling miserable; buoying others with hopes while feeling hopeless.
Like many plegics, I rise and fall emotionally given the state of my health, both mental and physical. This past October 3rd, 2 days ago, was my 8th anniversary of this injury, and coupled with my decline in physical health came a dip in my spirits. Nevada had been rejuvenating, then slam! came another round of severe illness, and what really fucked with me was the understanding that I’ll probably get sick again, sooner or later. Oh, that’s a general fear we all share, I’m sure, but more, in my case, was the sense that, in year 8 with no curative procedure in the immediate view, I’m likely to continue to slowly succumb to the ravages of paralysis. I know, it doesn’t have to be the case, and my friend, Carolyn, was an example of a quad who kept herself in great health, never had pressure sores or staph, her skin was still smooth and she possessed a youthful, hopeful spirit until the end.
Change. There is cyclical change, the seasons folding one into the other, and evident change, the wooden chair with rotting legs that eventually crumbles; the broken limb that heals poorly if at all and troubles the sufferer to the end of his days; the crushed spinal column that can’t heal and/or be restored. Change, as Heraclitus posited, is fundamental to living, something one must accept. I understand, I accept…and I still don’t like it.
In May, I weighed 198 pounds. On Monday, I weighed 186. I’m gaunt, weak, my mind not crisp, wandering lately from loose thought to loose thought. I find only a small hit of Bubba Cush, and laying with my wife tight in my arms, are my only releases. I study the research worldwide and am both encouraged and depressed: clinical therapies still years away, only foreign procedures -such as I have already attempted-beckon but no longer hold my interest. I must wait then until we have real regenerative therapies available here.
I am drifting, my thoughts still vague and clouded by the stench of diarrhea and abscess pus; my wound healing my desire to get back into the fight flagging. In my journeys and visits with fellow plegics, I have encountered much despair and depression, and have dealt with my own when it occurs. There is no set of words that heals, no trite phrases that soothe; for me, only the passage of time and the collection of good experiences lifts me again. I understand everything, I know all truths associated with paralysis and survival thereafter, there is nothing you can say to me I haven’t heard or expressed myself, and that too contributes to the funk.
Yet I go on, I have my son’s football game tonight, another book I’m crafting, projects around my new home, love to enjoy with my wife; I have much, have lost much, and will soon, knowing myself, look forward again to much…
Just not sure when, is all.
~
But I am Stoic, after all, I employ ataraxia to survive the agony and despair. Last week, when we debated going back to ER and admitting me or toughing it out and remaining at home (enough of the hospitals; I seem to get sicker there, and there’s nothing like my own bed, dying or not), it was the principal of ataraxia that weathered me through the peak of misery, and is the principal I operate from nearly always. Ataraxia: feeling the entire spectrum of life’s menu, allowing All to pass through me but never losing my center to the suffering, never yielding fully to the agony, knowing it would pass in its own time; faith in knowing everything passes. And not celebrating the highs to wildly, for this can weaken one’s center as well; balance, proportion, the awareness that I am aware, this is ataraxia.
Read Marcus Aurelius the emperor, and Epictetus the slave for an understanding of true Stoicism. Toss your German version, ‘I refuse to feel, I am stone’ BS crap, for life is meant to be felt in all its glory, yet our centers, our balance must be retained. Feel everything, as Aurelius states, just don’t get carried away.
And thus I feel, my vision clearing, and I continue…
(Note: My book, ‘Scouring the globe for a cure: a disabled man’s experiences with stem cell treatment’
can be purchased at the following Web address:
www.booklocker.com/books/2857.html)
