Patience.

Moments ago, I spit forth a stream of vile obscenities that would have made any Navy SEAL turn his head with a giddy eye twinkle thinking he was amidst one of his own. The victim of my ire? A bi-fold door. A bi-fold door that I have fixed four previous times because it is continually assaulted by a marauding 9-month old German Shepherd. Why didn’t I yell at the puppy? Because I have infinite patience with animals and children. Inanimate objects? Not so much.

Whenever I hear someone described as incredibly patient, I think, ‘You just haven’t found their deal yet.’ Everybody has his or her deal. No one is intrinsically patient or impatient; we all have limitations. I am honored that many people describe me as calm, tolerant, and understanding; those are nice words, and for the most part, they are representative of my demeanor. Being perceived as benevolent and possessing risibility are qualities for which I have worked. With that said, within a day, a dozen different imbroglios can cause me to behave like an ogre on PCP. And, the events that may cause me to react in that manner are entirely different than what makes another person crazed. I can have someone tell me that they wrecked my car… “Okay. I never liked it much anyway. Are you all right?” or they ate the last of the cheese… “Odd choice considering my addiction, but that’s fine. There’s more cheese in the world. Please go get some.” But then, I can try fervently to fit a square peg into a round hole and go completely batshit… “That’s it! Where’s a fucking flame thrower!?!” Obviously, I’m no Job. Or Micah. Or Ayyūb. I’m actually kind of a wank in many situations.

Patience is not about being good-natured so much as it is about pacing. When one mimics the pace of another, they exhibit patience. When I am with children, I go along with their pace and, if need be, strategically alter their pace and direction to meet the needs of the situation. I do not yell and scream; I am firm yet casual in my requests and make them appear interesting to the child, as opposed to an authoritative demand. And with animals? I play Alpha Dog; I am not intimidated by their behavior because I have enough experience to understand their aggression, fear, and games. I can tell within seconds if a dog is a poseur or freaking cuckoo. If, indeed, the dog is the latter, I tend to back away slowly. Of the many dogs I have encountered, I would guess only about 2-5% are mentally off; the rest are looking for guidance, praise, and limits.

Much to my dismay, I have never been able to match the pace of the elderly. By elderly, I do not mean the spry chatterbox neighbor who sports a kicky scarf and recently signed up for kitesurfing classes; I mean the skin on bones, barely moving, needs to have the heat set at 85 degrees and the television volume at the highest decibel level old person. The grandfather of a friend of mine was an extremely interesting man. Minimally educated, he eventually rose to the position of Minnesota State Senator. He had been a logger and worked his way up to serving on the University of Minnesota, Board of Regents, eventually having a campus building named after him. Of Norwegian blood, he was taciturn and industrious, and also equitable, honorable, and clever. He met many U.S. Presidents through his life and was well-respected by all. When he passed away, the now deceased U.S. Senator Paul Wellstone called the family to offer his condolences. The man had an incredible life. Yet, while visiting him, he would tell stories so slowly that I nearly combusted. “In 1939… a gentleman named………… Tom……. Stanley… no… Sherman… um… Sherman Thomas from…. Polk County… near Grand Forks…” The pauses were so lengthy, I wondered aloud to my friend, “Did he just die? Is he still breathing? Check his pulse.” She shushed me with a crinkled brow and eventually her grandfather would resume his story. In truth, I would have loved to have read a book about his life. I would have loved to have a conversation with him had he been twenty years younger. I couldn’t change my pace to match his and became impatient. I became restless and a little petulant. Numerous times I tossed on my coat and escaped into the cold for a cigarette, mumbling, “I could be out here for an hour, what would I miss? Nothing. Same sentence. ‘Grand Forks… north of Fargo... Tom… no, um, Sherman…’” I would spin in growly circles, stretch my neck, and tetchily jump in place before returning inside.

Not too long ago, I had to exhibit patience in a number of regards. I was awaiting test results, diagnoses, outlooks, expectancies, all kinds of things that, if I had gotten shit-faced or cried incessantly or found myself in a straight jacket, most folks would have said, “Well, can’t really blame her considering the circumstances.” I would have blamed me, though. I would have felt as if my emotional growth had reverted, that my earned skill of self-solace was fraudulent, and that my perspective was skewed, being reactionary before knowing reality. Some friends were worrisome, thinking that I was in denial. They were incorrect. One does not have to be consumed with the possibilities; one need only be aware. One need not rehearse outcomes; there will be plenty of time for jubilance or sorrow or nothing. My closest friend, Lara, knows this. She and I have had frank discussions, but she never pushes me. We have synchronicity, pacing and spacing, comfort and contentment, the deep desire to assure the other is happy and her needs are met without being overbearing. We have that amazing flow, never needing the other to perform or please or pity, knowing the other doesn’t need continual attention and fawning. We have patience with one another, whether I am incapacitated and need much sleep or she is having blood sugar issues and needs nourishment. I can be stupid and sick; she can be surly and agitated. We know what’s going on. However, while playing a raucous game of CatchPhrase, I must admit, I may have exhibited a bit less patience. But, no root beer references, and there were many, were making her get the “frosty mug” answer. With veins popping blue on my forehead, I tried the snowman aspect. She twisted her face, raised her eyebrow, clueless. Clenching my shirt in an attempt to rip my aorta from my chest and end my anguish, I shrieked, “THE MOST FAMOUS FUCKING SNOWMAN!!!” It wasn’t my finest moment, but anyone with a competitive board game spirit would surely understand. It’s part of my deal.

I will continue to attempt to broaden my patience. It is not that I desire to achieve any of the Seven Heavenly Virtues; I don’t give a hoo-hay in that regard. I do, however, believe that other beings deserve respect, and when I exhibit tolerance and longanimity, I like to think that I added civility sprinkle onto my surroundings. Until I improve, someone else can handle storytelling by senior citizens. I’ll be in the other room listening to a toddler tell the same knock-knock joke for a few hours.

Words.

A friend of mine suggested I blog about words. Wow. It’s really hard. It is a much more difficult task than one would think. How do I write about my truest love? As smarmy and French as it sounds, words are my raison d’être; writing them on paper is my passion; morphemes are my motivation to continue breathing. The method in which language evolves, the cultural implications, the global impact of hybridism, are all incredibly fascinating to me. Metalinguistics, semantics, syntax, phonetics, phonology--- I’m getting a bit aroused. I’ll be the first to admit that I am a word wonk, through and through. "And then, just to show them, I'll sail to Ka-Troo And Bring Back an It-Kutch a Preep and a Proo A Nerkle a Nerd and a Seersucker, too!" Theodore Geisel makes me hot.

I study idiolects, even my own. Those phrases and words frequent in speech, punctuating normal conversations, are curious. They are exceedingly expressive, but we have to listen closely--- to the manner in which the speaker stresses this word or that one, to the pauses between certain sentences, to the speaker’s choice to enunciate syllables or slur through them--- everyone creates jargon within vernacular within dialect within language. The nuances of verbalism shine like neon; a high-spirited conversation is a photograph of city light trails with my ears set at a slow shutter speed to catch all fractions. Words… miraculous. Contrarily, physical expression is not instinctive to me; I’ve known this since I was a child. While others may touch a forearm during conversation, place a palm on a shoulder when walking through a doorway, slap a knee during raucous laughter, I sit stunned in instantaneous analysis:

‘Why did that person touch me? Does she do that with everyone?’
‘Is he being polite or is he being weird?’
‘Is this touching thing what normal people do? Am I socially inept or is she particularly friendly?’
‘Is this necessary? Can’t he just make his face move and use his words to exhibit emotion?’

It’s not as if I cringe or flinch or run away screaming. I don’t have aphephobia, the origin stemming from the Greek roots meaning “touch” and “ACK!” And, it’s not as if I don’t like it; I enjoy when my friends are affectionate. It is just not my chosen form of expression. I like words. It’s similar to learning methods: some learn best by reading and then applying, others by listening, others by doing. None of them is wrong or inferior, just different. While a friend may reach for my hand to share an intimate moment, I’m more inclined to say something such as, “I like you more than toast,” or, “This hour right here, one of my favorites of all of my hours,” or, with rarity, “I love you, my friend,” which is said with pureness and without pretense.

Whenever someone has a passion for something, as I do for words, it has the capability to cause conflict with other aspects of life. Relationships with humans come to mind. Most have referred to my writing as “my mistress,” which I do not like. It sounds tawdry. It’s disrespectful. Words are not gimcrackery. Writing is not a cheap whore gussied up with fallal and gewgaw, all for me to have it off. I consider words… the writing of words… words… my inamorata. And, the reason I choose the feminine rather than masculine version, inamorato, is because I have always thought words inherently female and numbers intrinsically male. Obviously, it is devoid of truth and has a stereotype stank to it, but that’s how I have approached my studies, whether literature or trigonometry. Whatever. We all have oddities. In relationships with humans, I have some trust issues. Shocking, I know. Somehow, always, they disappoint. Though we tell ourselves not to have expectations of others, we somehow, always, do. Now definitely, the rewards of interaction are worth the efforts, despite the times we are saddened and disenchanted. There is fluidity to relationships--- they are tensile and pliable, similar to the gentle chaotic flow of wax blobs in lava lamps. And, I do enjoy relationships. I like romance; I like friendship; I’m even glad for some of the kinfolk. Words, though, are timeless; they have placid permanence, accompanying me through the whole of life. And, if the relationship between words and me is not going well, it is entirely my inadequacy. The words remain flawless.

One may speculate as to if I have a disorder. Am I obsessed? Do I suffer from logomania and/or graphomania? I feel secure in stating that, despite other psychological issues, I do not have a pathological compulsion with either words or writing. But, there are certain actions in my day that are habitual (it is so different), including but not limited to: relieving my bladder, partaking in hygiene practices, listening to music, playing with my animals, and writing. While others may spend a few hours watching television or shopping or partaking in sports, I play with words. I juggle them and twist them and twirl them and throw them into the air to see how they land. Each one is unparalleled, similar to the snowflakes I catch with my tongue, but instead enticed within the whimsical webbing of Wernicke’s area. My entire life is whirling lexical rapture. Truthfully, I wouldn’t want it any other way. I am content with words, overjoyed with words, impassioned by words… my inamorata.

Dependence.

Here’s a conundrum: we are encouraged to rely upon others yet be independent, to be self-sufficient yet depend upon our friends. Troublesome, yes? We admire ambitious go-getters, uncontrolled fireballs who make it on their own after walking on hot coals and not being taken by “the man”, fighting the system and the power. Because anything you can do, oh hell yeah, doing it better. Rock on, free bird.

We also have a high opinion of those who wonder where all the flowers have gone, and being in possession of a hammer, they get up early and hammer in the morning, cooperating and selflessly working toward common good, the betterment of the village, sacrificing for others so that generations to come experience freedom and hope because this land was made for you and me, for gosh sake.

I reckon we’re screwed in this riddle.

As a child, I concluded that the only person who could take care of me was me. I had encountered some difficult family situations and that coupled with uprooting and relocating numerous times, gave me a sense of aloneness in the world. Without a shoulder to lean or cry upon, I strived for complete independence. I was willful, strong, determined, and purposeful. Promoted to store manager when I was twenty-one, I bought my first condo less than two years later. Kicking up my heels and swinging round a lamppost, I was on my way. I was never a rip-roaring giant head, hoarding my minimal wealth and dismissing others with scornful spit. Picking up bar tabs, sending checks to Greenpeace, and slipping Jacksons to friends in need were commonplace. It was fine for others to receive assistance from me, but ignominious for me to rely upon them. One of the synonyms for dependent is minion. Sweet. That’s how we feel, though, isn’t it? We feel as if we are subordinate to others, that perhaps we were on equal ground and now that we have asked for assistance, we have dropped a level and are beneath others. We feel helpless when we ask for help. And yet, if others ask us for help, we don’t think of them as weak, we don’t judge them to be powerless, obsequious followers. Why do we judge ourselves differently than others? We all have peaks and valleys; we just feel much more comfortable peaking. We never know how deep the valleys will be. We toddle along thinking that rainbows and a Starbucks are just over the ridge. When we see vultures circling over us and bleached bones poking up from the sand, we think, ‘Well, that can’t be good.’

Not too long ago, I encountered modifying factors. What might those be? I prefer the term to “circumstances.” The reason for that is because it sounds less vulnerable. We all have a contingency factor, right? Some kind of conditions that influence or determine the outcome, and quite frankly, most of the time, circumstances are unpleasant. It’s rare for one to hear, “Due to circumstances, she overwhelmingly succeeded in life!” Nope. She succeeded because of hard work and drive, because of fate or angels or prayers, because of daddy’s investments and mother’s connections. We hear, “Due to circumstances, she was broken down, wiped out, poor and nearly dead.” That’s not happy. Due to those snidely circumstances, I found myself experiencing a muckle of madness. Without my friends and family, right now I would be homeless. I’m a pretty scrappy gal, but I’m not sure how I would handle that. If I were to venture a guess, here’s what I think would happen: drugs, a lot of freakin’ drugs. I would be a toothless, emaciated skank in a very short period of time. This is not because I don’t have confidence in myself, that I don’t believe I can pull up them-there bootstraps. This is because everyone has a bottom, a place they hit hard and cannot climb out. I have learned through forty years that I can be sick, I can be poor, I can be challenged, I can be broken, but I cannot be alone. I cannot be without those I love who love me back. Despite my Pee-wee Herman quoting of being “a loner, Dottie, a rebel”, I cannot be without support and guidance and wisdom from others. At times, I rely upon others whether emotionally, physically, or financially. Does it make me weak? Somewhat, but is it a defect or is it fragility? Is it fault or vulnerability? For me, the difficulty comes from the essence of feeling unfree. But, that is my own doing, my own twisted thinking. The restraints I feel are in opposition to the liberation others are giving me by providing me independence by allowing me to depend upon them. That’s a labyrinthine, tortuous tangle.

So then, how do we resolve accepting assistance without internal self-flagellation? I pondered this for a short time which resulted in three ideas: 1) Wear soft shoes and pretend all of your friends are Cheyenne; 2) designate Miss Manners as your shoulder angel; 3) read books on Adlerian psychology and nursery rhymes at the same time. I’m going to expound on this so as not to give the impression that my intellectual faculties are deteriorating. First, if your companions are all Cheyenne, they would never judge a man until they had walked two moons in his moccasins. Eh? See? Very Polonius of me, yes? Next, if Judith Martin was sitting cross-legged with hands folded upon her knees, resting smugly on your shoulder (and, of course, she was very, very tiny), she would whisper in your ear to be nice, gracious, and express your thanks, then shut your pie-hole. I believe she’s edgier when she is miniaturized. Finally, keep in mind that the song lyrics are, “See saw sacradown, which is the way to London town? One boot up, and the other down, and this is the way to London town.” Simple, playful, nonsensical, just as traditional verse for children should be. The lyrics are not, “See saw Nero’s crown, narcissist or meltdown? Ego up or self-loathing drown, inferiority complex will jumble you ‘round.” When it comes to mindfucks, stand on the pivot bar.

In my defense, I mulled this quandary over right before fading into a hazy pseudo-nap in which the last thing I heard was, “The Final Countdown” by Europe and the last thing I did was eat mango sorbet too quickly which resulted in my blood vessels swelling from brain freeze. I think maybe I should just say, “Thank you,” and retire for the evening.

To my friends, thank you.

Bad-Ass.

This is the conclusion of my malady trilogy. This is not because I am healthy.

The other day I was particularly colorful which is unusual, as I mostly prefer somber attire. Embellishments and adornments included multi-colored Converse All-Stars, and beneath a black t-shirt, a long-sleeved striped crewneck worthy of Linus van Pelt, and a purple bandana harnessing my mane. A gentleman next to me at the gas pumps engaged in conversation about the weather. It was the perfect autumn day. He mentioned that the forecast predicted snow soon. I responded, “I will take that snow and I will like it. Today is perfection.” For that proclamation, I got a hearty, “Right on, girl!” I thought, ‘There’s a bit of the old Deb. Sickly and shaken but in the moment.’ When I drove away, I told myself I earned a gold star. Maybe even a gold star with sprinkles.

Following the appointment with the neurologist, the week continued to be a footslogger. At the hospital that same day, I had twenty vials of blood drawn. For this, I was rewarded with a morsel-size granola bar and a wee plastic container of apple juice. “Really?” I asked. The nurse said nothing but appeared to be apologetic. I continued, “That’s it? I was hoping for a sticker, maybe something saying, ‘I was severely phlebotomized today.’ No such luck, huh?” Additionally, the results of the MRI showed more lesions were on my brain, one in the portion of the skull that controls movement on the right side. Drat, but it explained the partial paralysis. And just for kicks, one of the blood tests indicated that my white blood cell count was three times what it should be. Generally when that happens, the patient is fighting a horrendous infection or may have leukemia. Once again I was asked by a physician if I wanted to be hospitalized. Once again I declined, because I don’t like the act of smoking to be hard.

Upon my return home, I called my closest friend, Lara, and asked her if I was one of the toughest broads ever or too stupid to know how sick I really am. She laughed, more at me than with me. “How about both?” she asked. She and I have always dreamt of sitting in rocking chairs on a porch when we are old and batty. All the local children would gather because they could finger-paint the porch and we two old biddies always had something weird and good, like a cauldron filled to the rim with nougat. No matter the relationships that have come and gone, changes in jobs and residences, whether fifteen or 5500 miles apart (she up and moved to Greece once), we always take care of the other, we are always there for the other. I often describe her as my heart. This is representative in both physiological and psychological manners: she is a source of calm for me, steadying my internal pacing so that I neither combust nor cease; also, she can cut past the bullshit into the vital source of my emotions, disallowing my own intentions to elude and hedge difficult issues. She has suffered with me through the MS and the new test results were frightening to us both. Often as my medical issues increase in severity and complexity, I feel assured others are wearisome just as I am enervated. How often can or should I answer, “Like shit,” to the question, “How are you feeling?” Sometimes I will respond, “Fine,” but my pallid complexion and darkened hollows under my eyes defy my best attempt at a sassy grin. Still, my health has become predominant, no longer a stretch or a spell, but rather what feels like an extended term of doom. At times, I am frustrated by the tedium of my health and also perturbed that others are bored. Unfortunately, I don’t know what to tell people. I didn’t bake the most delicious casserole the other day; I had vials of blood drawn. My doctor didn’t say, “Tip-top shape, buckaroo!” My doctor wanted to hospitalize me. When you are diseased, it doesn’t stop; one gets a breather from time to time but that’s all. Am I bitter occasionally? Of course I am. Just because I normally have a positive outlook on life doesn’t mean I spend my spare moments chirping out, “Good Ship Lollipop.” I’m optimistic not a fuckhead. I’m cheerful not retarded. Truth be told, I’m concerned about decaying in a pathological ennui. I tell myself that this is an unpleasant juncture and soon enough I will return to stories and drawings and music and laughter. I envision it. Once again, I think, I will pluck mystical moments from the air, this time clutching and snatching intrepidity from a zephyr and this will invigorate my body, its veins and organs and bones awash with my will, internal whitecap waves that decontaminate, lave, and gussy up. I sometimes fall asleep with these thoughts, content that when I awake, the internal blight will have been vanquished.

I have never been particularly fond of projecting; if one was to contemplate all the “what-ifs” in the world, she would essentially give up on this life. With the mere possibility of leukemia, I did allow a few questions to filter through my lesioned brain. “Could I handle another major disease?” “Will I feel like hell for the remainder of my life?” “How will I possibly do everything I want to do?” My frustration was based upon the malaise and the relentless wasting, not an anxious individualized Armageddon. My mind, weary and feeble as it is, takes me to the absurd quickly, mocking my own unanswerable questions, countering serious possibilities with questions such as, “What if my brain split open and tiny little lemurs marched out while ‘Ride of the Valkyries’ played in the background?” and, “What if my white blood cell count isn’t really triple the norm but actually completely normal because they didn’t take into account my superhero status?” and, “I’m feeling really sick. I wonder if I can do a handstand.” For clarification, it is not that I avoid “the big questions” in life, not at all. Frequently I excogitate and cerebrate and marvel and puzzle over both the complexity and the simplicity of humanity. But, the thing is: I have an unrestrained ebullience for this life. This life. When something mitigates that, stabs and slices at that joy, I am wounded and weakened. Life, to me, is magical; it’s enchanting, evanescent moments, gone with an eye blink. So many people miss that; they just don’t get it. Do you know what kinds of people annoy the living hell out of me? The ones who are always annoyed. So, you’re irritated that the doctor had to change your appointment because of an emergency? Be glad you’re not the emergency, you piss-ant. And the waitress got your order wrong on a short-staffed Saturday night but corrected it within minutes? Cry me a river. And, I’m sorry, what kind of day did you have that I won’t believe? The retail clerk wouldn’t accept your return from six months ago? And your babysitter puked and had to go home? And your dog brought mud into the house? Boo-fucking-hoo. Lots of people have it better and many have it worse. That’s not the point. The point is: we all have a choice; we can snivel and be defeated or we can be bad-asses, striding bold and confident, capturing ephemeron in our remembrance as children clutch flower petals and ladybugs in their pockets. We can be enchanted.

Despite my elevated enthusiasm for life, I learned that I probably shouldn’t have been operating vehicles and machinery on tons of medication and a few pints low on plasma. I spent a good portion of my time on the road admiring the magical glucose showcase of autumn leaves, staring dreamily into the wispy stria of contrails and cirrus clouds against a blue sky of Olympian pageantry, and admiring sunshine that demands eye crinkles, teary lashes and maybe even permanent visual impairment. How could I not? It was the perfect autumn day. I was captivated because it was magic.

This is the conclusion of the malady trilogy not because I am healthy. It is because I am going back to being a bad-ass.

Cripple.

This is Part Two of what happened last week. The conclusion will appear soon.

The course of my steroid IV treatments lasted five days. Each day it was an hour drive to the hospital, an hour for the treatment, and an hour back. My mom drove me the first three days and I could tell that though she would continue making the trek in perpetuity, she was tired. I called upon a few friends to help, thus beginning my jaunt as a transient cripple. One evening, I stayed at the apartment of a couple, Angel and Bill, who are gracious, giving, kind human beings, close friends of mine who are not only lovely people but also the parents of a two-and-a-half year old girl who is one of my frequent playmates. Arriving at their home before they were done with work, I situated myself at the computer for some solitary writing time. Once my hosts arrived home, we played, danced, sang, devoured grilled cheese, and reviewed a scrapbook dedicated to the manliness and godliness that is Gavin Rossdale (it was from Angel’s teenage horndog phase). When I awoke in the morning, the toddler, K, jumped on me with a grinning smear of a kiss and a warm hug. She then went to the corner where my belongings were stashed, grabbed my cane and my helmet and brought them to me. Her manner was very determined and serious, as if to say to me, “Here. Now you can start your day.” I have never met a toddler more aware of others and so capably advanced of empathy. It astounded me.

Angel drove me the hospital for my morning treatment; I had my to-go cup of coffee, and K had her sippy cup. We raised our glasses and I said, “Cheers.” K crinkled her eyebrows, took the obligatory sip, and looked at me again. I raised my cup and she did hers, and I said, “Slàinte!” K smiled, bellowed, “Slàinte!” and took a hearty gulp. Her mom inquired, “Did my daughter just speak Irish?” I responded, “Yes, she did and quite well. Apparently, she prefers that particular drinking toast above others.” Angel deposited me at the hospital entrance and I was immediately transferred into the security of my aunt and uncle. They are both retired but definitely have some rocket fuel left in them. I went through another treatment and was transported to stay with Aunt and Uncle for the evening. It was a wonderful experience. They and I haven’t spent much time together since I was a child, but they are close with my mom. My Aunt had the coffee started, a can for cigarette butts outside, and a computer and c.d. player in the guest room. Perfect. We shared some very nice time together, having conversations that aren’t necessarily common among gentle gentile elders and middle-aged youngsters, but were enlightening and playful. Two other friends picked me up from my relatives’ house and returned me home. The transient cripple road trip full circle.

Not too long ago, I made the mistake of saying out loud, “Go ahead and take my mobility but leave me my madness.” It was me being witty and audaciously secure in front of a small audience. It was miscalculated balls-up idiocy. Can one tempt fate? Did I taunt fate? Huddled alone in darkness apart from the blue glow of a lava lamp, I ruminated and navel-gazed. Did the mere vocalization of that sentence substantiate its inevitability? Surely vox cannot hold such sway. Recumbent and alone, I played mind/body games. I clenched my eyes tightly and pretended I was floating above looking down at my motionless self, at the ready to sketch portions of my stillness. Envisioning how my hands and arms were resting, a make-believe pencil drawing in my head, I would check. How I conceived the position of my hands was correct. I stretched my hands, admiring their ease of function, and proceeded to play the same riddle with the legs. My imaginary rough drawing of my legs was upon a crisp stark white paper. Done, I thought. These are my legs in repose and anticipating solid shuteye, feet uncovered to prevent quirky lunar lunacy, this is how the lower portion of my body rests. I checked beneath the blankets. I was wrong. How I had envisioned my legs and feet was different than how they were. The partial paralysis was mocking me. The configuration of my lower limbs was impossible to guess because they felt detached from my being. I didn’t sleep well that night.

Too much to think about, particularly when crazily medicated. A god, spirituality, karma, religion, afterlife… I, I… I don’t know. To me, all of it swirls unnecessarily--- a motley mishmash with fate and astrology and personality charts and questions such as, “Why is the sky blue?” I’m not saying contemplation is pointless, but often it seems hurried, trifling, as if it is a substitution for the living of life, time spent snubbing aliveness.

The steroid IV’s did not achieve the results my neurologist had anticipated. More tests had to be done. Vials of blood, MRI’s, the possibility of chemotherapy as the next treatment. I inquired about my hair, what would happen to my hair. I said to my doctor, “I have great freakin’ hair. What’s the chemo going to do to my hair?” He responded, “It may thin a bit.” I looked at him not as if he had completed twelve years of intensive schooling and had over a decade of specialized practice, but as if he was a silly dum-dum. “We have to look at other options,” I stated. “We don’t mess with the hair. I have great freakin’ hair.” He nodded softly and spoke as one would to an imbecile, “You do have very nice hair.” We decided to reconvene after receiving and reviewing the results of the tests.

Paralysis.

This is Part One of what happened last week. The conclusion will appear soon.

On Monday, the lower portion of my body was particularly weak. At work, I was having difficulty standing; I am accustomed to challenged walking but not to trouble with staying upright. I left work early and upon my return home, stumbled upstairs for supine rest. When I awoke, I experienced additional issues. I called to my dad: “My legs, I can’t make them go.” I tend to speak in simple terms when paralyzed with fear. This manifestation was new. Although MS alters, tweaks, and increases and decreases symptoms regularly, I have always had the capacity to maintain minimal functional bipedalism. I’m rather proud of that. Alas, I couldn’t stand and hold steady; I shuffled and wavered, always seconds away from falling. A myriad of thoughts sliced through my mind and immediately became jumbled, as if my skull was filled with steel tavern puzzles intertwined with Rubik’s Cubes. How was I going to disentangle all of these light-speed velocity thoughts?

First, I got my Taoist groove on. I do not claim to be an actual Taoist because it requires a tremendous amount of discipline in regard to acceptance and serenity and my lack thereof would be insulting to actual Taoists. With that said, I have read many works concerning its precepts and wisdom. I thought of wu wei, action without action, creative quietude, and yin yang, opposing, rooted together, transforming, and balancing. The Tao, it is indefinable, unlimited; it exists and I have no control. After many calming deep breaths, I panicked. What the heck was this all about!?! If I had had the capacity to be a whirler, I would have. I wanted to ululate and yaup and waul. I wanted to beat the living piss out of something: my fists through drywall, stones through windows, just to run wildly and kick and thrash and leave a wake of destructive rage. Funny thing about partial paralysis, those reactions are negated immediately due to the nature of movement stoppage.

My close friend, Andrea, was at my house within an hour. We talked seriously for a few minutes and then ate some cheese, as dairy products always assist with contemplation and problem-solving. I needed her to help me escape my present terror. While I smoked cigarettes, we sat on the porch, her following my lead singing an altered chorus of the most famous Bangles song: “Ay oh whey oh… walk like a paraplegic.” It was horrifying in its irreverence but quite necessary. I couldn’t fathom that this was it, that this was the beginning of my life in a wheelchair. I needed to mock the possibility, ridicule my body, its actions and limitations, scorning my own soma for its despicable behavior. I may have well punched at my legs, pinched and scratched them for some response. This is why having a friend beside you is so important. I wasn’t given the opportunity to sit in my own vat of misery, my own swill of self-pity. Instead, Andrea and I watched a clip from “The Simpsons Movie” time and time again. We sang along to, “Spider Pig, Spider Pig, does whatever a Spider Pig does. Can he swing from a web? No, he can’t; he’s a pig. Look out! He is a Spider Pig!” It was silly; it was immature and irrational. It was the best thing in the world for me because it provided a diversion, keeping me from sobbing and injuring my own being out of fear and madness.

The next day, I was scheduled for my regular IV infusion, a two-hour process that fills my body with medication on par with chemotherapy, its intention to slow the progression of my disease. That appointment was nixed due to circumstances, and I was instructed to go to my neurologist’s office. My doctor steadied me as best as possible as I attempted to traverse the hallway; it was not going well. One symptom of MS is spasticity--- think of clenching your muscles and holding them clenched as long as you can. Then, think of never being able to stop the clenching. It’s rather uncomfortable. My legs were trembling and my right foot was curled inward. My physician wanted to hospitalize me. I explained my philosophy that it was much easier to crawl out to my parents’ front porch for a cigarette than to take the hospital elevator down four floors, meander through the hallway and the main lobby, exit the doors in search of a proper smoking area outside, and then reverse the entire journey to return to my room. He shook his head and touched his temple as if a pulsing vein was igniting a migraine. We agreed to start the five-day process of outpatient steroid IV treatments with a dosage strong enough to make a wildebeest batshit.

At this juncture, I was barely mobile, my skin tone was ashen, I had black circles beneath my eyes, and I actually was a tad nervous. The spasticity was horrific; the pain was excruciating; I was angry and scared. Often I run a dialogue through my head, questions and responses that help me analyze the situation. It is not that of a child vs. adult, or angel vs. devil, or any of that. It is my emotive self conversing with my intellectual self, utilizing everything I have learned from books and mentors and friends and family and age and experience. On the drive home from the doctor’s office, I began.
“What do you think is going to happen?”
“We don’t know.”
“Do you think this is it? I’m going to be in a wheelchair?”
“We can’t predict the future.”
“I need to know something right now.”
“No. If you need to know anything, know that you cannot be reactionary. Do not project. Do not panic. Let’s see what happens with the medication.”

Upon my return home, my mother brought me dinner and I wrote and I rested. The next day, I would start the intravenous treatments.