in the dirt

Posted on June 3, 2014 by C. M. Condo

I hate you. And you. And you, and you, and you, and everyone else with better coping skills than me. I know my challenges aren’t unique. But I hate people spouting sunshine in spite of their problems, being so damn happy and grateful and saying it’s a “gift” with what appears to be true sincerity.  I do not believe you. Where is your rage? Where is your resentment? Where are your tantrums, your moments of despair? I cannot be the only person who has those. But I hardly ever talk about it anywhere but here; I’m reluctant to rain on the perpetual gratitude parade that permeates every support group I have the dubious honor of attending.

I hate everyone who has gotten injured and recovered. I hate it when someone gets well enough to leave. And everyone talks about how wonderful that person was and how he was always positive and hopeful and how inspiring it was. I’m not inspired. I’m disgusted. I’m disgusted with this and I’m disgusted with them and I’m disgusted that, for no apparent reason, I woke up yesterday morning with excruciating pain radiating out from the right side of my neck such that I could barely turn my head, in either direction, and no-one could do a thing about it, not the massage therapist, not the physical therapist, and certainly not everyone’s prayers that are supposedly being offered up on my behalf.

I doubled up on my pain meds last night. It’s the first time I’ve ever done that. Occasionally, I will go so far as to take one and a half, but two was on the other side of a Rubicon I dared not cross. Until last night, when I was in so much pain that I could not find anything to distract myself from it and feared I wouldn’t be able to sleep.

I’d explained the situation to the massage therapist when I went to see her that afternoon, and she dug into my neck and shoulders for thirty minutes of excruciating manipulation, the ostensible purpose of which was to relieve the tension in my neck that was causing the pain. The pain subsided for about an hour or so afterwards and then returned with a vengeance, ice packs and ibuprofen be damned. I finally admitted defeat at 6:30 PM and was medicated and in bed less than an hour later, only able to calm myself by telling myself that I would wake up the next morning and feel a lot better.

But I woke up at 10:30 PM, 1:00 AM, 2:30 AM, and 5:15 AM. By then, the pain had been reduced from a sharp stabbing to a dull ache (although it is now steadily working its way back up the scale). I was still exhausted, but couldn’t sleep any longer, so I got up. One of my neighbors in the building is a high school teacher. She walks her dog at about 5:30 AM. I saw her when I let out my cat. I wonder if she wonders what I’m doing, up at that ridiculous hour. All of us in the building are friendly with one another, so I’m pretty sure she’s aware that I’m not working.

But then again, it’s more likely she didn’t even notice; she has a life. In addition to teaching, she works as an event photographer on weekends. She has some sort of autoimmune disorder that takes her out of commission every so often, and yet she somehow manages to work two jobs. I’m not sure I will ever be able to work two jobs. Right now, one job and a hobby remains questionable, especially if I’m going to get knocked off my chair with pain like this every ten days or so.

What is the point of this latest insult? I was in so much pain last night I started screaming and pounding on my dresser for God to get out of my life, that I’m done being pushed around and I don’t need to learn anything else and please, please, leave me the f*** alone already. I’m not grateful, I’m incensed. I’m so angry I want to set fire to something and watch the fire rage and imagine it’s my own wrath in physical form, destroying everything in its path. The fury feels physical to me, like I have a destructive force trapped inside my body that wants nothing more than to leap out and strangle the next person unlucky enough to walk in front of me.

I started a blog post a couple of days ago about feeling guilty that I’d taken all this time off to recover, considering how much better I felt after just a couple of weeks. Well, I don’t feel guilty about it any more, that’s for sure. I feel betrayed, like the oasis I enjoyed in the few days before the neck pain struck was abruptly snatched away as soon as I started to think I could be comfortable there.

I could be happy there. I don’t know how to be happy here. I feel like I’m getting yanked around for no other purpose than the amusement of some invisible, malevolent spirit. I’m scared that no-one can help me; that there is no God watching over me; that there is no higher purpose to all of this; and that it’s not a trial by fire but just a run of bad luck (not that I have much experience with any other kind).

And this isn’t the first time I’ve felt that way, and I’m tired of feeling this way. I’m tired of taking pain medications that don’t seem to be doing anything. I’m tired of doing everything I’m told, changing my pillows, changing my car, bringing special cushions wherever I go to help maintain the correct seating posture, doing my stretches and exercises, being mindful about how I’m using my body, and not having it matter. If this is going to keep happening, what’s the point?

There is no point. That’s what I think. There is no point to any of this. I don’t know what’s helping me and what’s hurting me. I don’t know what else I’m supposed to do and I don’t know what else I’m supposed to learn. If this is supposed to test my faith then I officially fail the test, because what’s happened is that my faith is gone and I dare God or anyone else to give me one good f***ing reason to bother with a search party.

And so I’m filled with hate, like it’s dirt, like it’s black mud welling up from deep inside my soul and expanding into the tips of my fingers and toes. If I’m going to be stiff and sore and mangled, why bother fighting it? I’m not strong. I’m weak. I’m exhausted. I can’t keep doing this. I need a reason to fight – something to fight for, a goal, anything – and I can’t find one. Just a few days ago, I had the audacity to consider that I might be well enough at some point in the distant future to go back to some semblance of normalcy, a regular job, maybe even some community theatre. And so of course, as soon as that seedling of hope started poking up through the dirt, my pain came along, tore it from the ground, and flung it away. Now I’m just left with what I had before. Just dirt. Nothing growing; nothing to grow in it. Nothing at all.

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time, space, and state of being

Posted on May 28, 2014 by C. M. Condo

Time as we understand it is a linear, stepwise progression; measurable, dependable, irreversible. But there are physicists who will tell you that this is an illusion imposed by our own minds, which are incapable of conceiving anything beyond a progressive, three-dimensional existence. A select few extremely intelligent individuals are able to shake loose from this mental constraint and see our perception of time for what it really is – a post-factory modification, created to help us understand a universe of multiple realities by way of temporal separation.

From this tool, superstitions arise and intelligent design is suspected. When a particular sequence of events appears too coincidental to have happened by chance, it suggests the existence of some unknowable power arranging these events in such a way as to point us in a particular direction. We accept this idea through a concept we call faith. Wherever there is uncertainty, we ascribe it to an unknowable entity, and use that entity to filter the world around us such that once applied, everything thereafter appears to come from, or at least pass through, a pre-existential consciousness capable of influencing the events that occur in our existential existence.

But what if all things, good and bad, happen at the same “time,” and the only thing under an all-knowing entity’s influence is the sequence in which we perceive them?

Over the last couple of days I haven’t been able to shake the feeling that I have arrived at a new state of being. Most of the vestiges of my life “before” are gone. Some are visible, noticeably my immediate environment, my breakfast bar turned into a desk, my guitars and equipment ensconced at friend’s houses so I don’t have to see them every day, a larger, easier-to-drive car. Other assimilated phenotypes include my limited range and stamina of motion, observably smaller body, and even my loosened standards of appearance. But the psychological changes, while less obvious, are far more significant.  Somehow, without realizing it, I have found my way to a state of acceptance, or something near to it, of my present disability.

The last thing to go, the summer class, was dropped last week. Summer terms are less than half the length of regular semester terms; missing a single class or lab is like missing two or three during the school year. With my pain level still as mercurial as a toddler, it seemed unwise to expose it to such an inflexible environment. Instead, I took a couple of half-day receptionist shifts at my father’s business. They know about my condition there; there’s no lasting consequence if I have to miss a shift every now and then.

Beyond that, I have nothing to do, or rather, nothing to finish at a predetermined deadline. No homework, no exam to study for or paper to write, no project at work, no lesson plan to craft, no race to train for, or gig for which to practice. I cannot schedule any home-improvement projects, for obvious reasons; all I can manage is a tentative plan to clean out/reorganize a drawer every now and again if I feel so motivated (I did one in my kitchen yesterday). My summer stretches out in front of me like a newly washed blackboard, all traces of the various plans that had been written on it and subsequently erased – many times over – now cleared away.

Depending only on my pain level, I can either sit around my apartment and watch Netflix all day or go to the gym and wander around, trying out different machines, for as short or as long a time as I want. I used to plan grocery or drug store trips like air strikes, each moment strictly accounted for from list-making to self-checkout line. I could not conceive of why some people would browse through a supermarket like it was an antiques shop. Now I’m the one languidly trolling the aisles, selecting items and reading ingredient lists out of curiosity rather than necessity.

I used to be so parsimonious with my time. Now I am suddenly spendthrift, dispensing it freely because I have so little to spend it on. The passage of time has become a sideshow to an otherwise unmoored existence, in which things occur untethered to any discernible pattern. I am at rest – full and complete rest – for the first time [sic] in as long as I can remember. Not for a weekend, or even a couple of weeks, but for an entire summer.

According to the physicists, all of the things that have happened to me, along with all of the things that could have happened to me but that I did not experience, are all occurring in a “now” better described as an “is.” I and my fellow humans, and/or the God-figure referenced earlier, each have access to a certain set of them and simply arrange them in the way that makes the most sense to us. If so, then the life I was living – the life I thought I was supposed to be living, with its rigid boundaries and stingy expenditures – was the illusion, and I am now experiencing reality in a truer sense than I have since I was a child.

When we are children, an hour is interminable, and next week is so far in the future as to be inconceivable. This sense of time gradually shrinks from slow and deep to rapid and narrow as we age. We think of this as maturity; an acceptance of life as it really is. But what if we are not moving closer to reality, but farther from it, driven by a need to measure our lives, to understand them, to be able to dictate them in a logical sequence to ourselves and other people?

A song I wrote a number of years ago contains the following phrase: everyone wants his life to rhyme/retrofits the touchstones in a straight line. At the time I wrote it, it was meant to illuminate the ways in which we fool ourselves into thinking that we have clear and knowable reasons for why we do what we do. But I look on it now and find a new meaning. We do not arrange our lives in order to explain ourselves. We do it as a way of assigning an explanation for life itself.

This is not to say that there isn’t one. But I submit that the pursuit of that particular knowledge keeps us looking backwards instead of forwards. We cannot always know why some things happen and others don’t. Our energy is better spent adapting to the present order of things than trying to explain it. Explanations delude us into thinking we can effect a far greater degree of change than what is usually possible, or even desirable.

This summer, for whatever reason, I am getting a break – an honest-to-goodness summer vacation. I valiantly resisted clearing the space for it, but now that I have been forced to surrender all but the barest minimum of activities, I realize how much I needed it, and how badly I wanted it. This gift, pressed into my unwilling hands, may be my last hope for a piece – or peace – of recovery from what has happened to me. My shoulder injury has marched through my life unchanging since it occurred eight months ago. What if it was my artificial molding of time itself that enabled its immutability? Now that the mold has been broken, perhaps there is an opportunity for a different state to fill the newly vacated space, “space” in every sense of the word: physical, psychological, spiritual, and temporal.

Vacation, root word, “vacate;” to leave something, to create a void. I used to take it upon myself to fill the void. Now I’ve been banned from access, and the universe will be filling it for me. With what, I do not know.

But most important, I’m not worrying about it – another new feature, part of the acceptance, part of this new state.  No longer am I living in “if” or “when.”  I’ve found my way to “is.”

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consequences

Posted on May 26, 2014 by C. M. Condo

Actions have consequences. We may forget it sometimes and act as though our personal bubble is a closed system. But while we often behave as though we are little universes unto ourselves, most of us live in close enough proximity to other humans that our actions have observable effects upon collision with other people, places, or things.  It is a feature of maturity that rather than trying to undo those consequences, we swallow our pride, bandage our scrapes, and get up and get back to work.

It’s actually a relatively simple life plan: do your best, acknowledge mistakes, move on, do better next time. It’s all we can expect of ourselves. It’s all I can expect of myself. I don’t usually have trouble with the first step, or the second. But I get hung up on the third. My life plan has been: do my best, apologize for my mistakes, and then berate myself for them as violently as possible. As if I wouldn’t remember. As if I wouldn’t learn.

I do remember. But, admittedly, I don’t always learn. This weekend was a textbook example. I went to trade in my stick shift hatchback for a slightly newer, larger automatic transmission vehicle, and got suckered into a nicer car than I wanted and more debt than I’d planned, all while being overcharged for the privilege.  More than one confidant has since pointed out to me that this is not an uncommon experience. But I went into full-on self-flagellation mode for an entire day before I realized that solace lay in giving up on undoing the mess.

It was a relief to call off the dogs and decide to simply deal with the fact that I’d made a spectacular f***-up, a f***-up that, despite the large initial blast, did not cause any lasting damage, would not kill me, and would not ruin my life forever. I’ve talked about an increased tolerance for physical pain on this blog before. If I can’t enjoy a little more psychological resilience as well, then this really will have been a wasted exercise.

And it merits pointing out that I should have known better. I’ve never bought a car before in my life. I’ve never even watched a car being bought. My only experience with the process had been the part where people shake hands and exchange keys. So I don’t know why I thought I could waltz into a car dealership and get exactly what I wanted.

Worse, it was my second dealership of the day – my fourth overall – and I was tired, and my shoulder pain was starting to poke through the medication. My own car was a torture chamber of cramped seats, poor shocks, and constant clutching and shifting. I couldn’t bear the thought of having to drive it home, and then back out again to endure another day of fighting off exuberant salespeople. So I folded. I knew I was being taken in, and I just didn’t have the energy to fight it.

Surprisingly, I’m still stunned by how callously some people are able to take advantage of others.  Despite hard-earned prior knowledge in this vein, in the moment I forgot how easily some stoop to the brazen railroading of another human being.  But the real problem here isn’t that people like that exist – nothing to be done about that – but that I still don’t know my limits, even after all this time, all this pain, and all of the angst expressed at all this length on all this blog.

We are a culture that celebrates those who push past limits to succeed. It deludes us into thinking that success is the inevitable result. But my experience has been that failure is far more likely. When I try to leap the fences, I usually end up on my ass. I was an easy mark: female, inexperienced, alone, and exhausted. I’m lucky I managed to get out with no major harm done, my pride more bruised than anything else.

We think we know what’s going on in our heads all the time, even though, after the fact, we often have to conclude that we don’t.  I’d latched on to the hope that I would not be driving my hatchback home that afternoon. I’m not sure how or when that happened; I had no reason to think it. And in fact, I wasn’t thinking it, not consciously, anyway. But at some point, a decision had been made, and accepted, and written into the program. And as such, just as I had decided, I did not drive the hatchback home. Action. Consequence. There’s no surprise here.  And it’s a lesson I’ve been taught before; many times before, many of those times recently enough to be included in this blog.

The experience has thrown into stark relief exactly what my issues are, and how dangerous they can be. Life continues to toss larger and larger boulders at me, and I just look up at the sky and think, gee, that couldn’t possibly happen again, and go right back and repeat the same action and get the same result. Our heads are echo chambers. We have to let other people into them, or we will mistake our inner voice for the voice of reason. We have to remember that the world is too large to fit inside our minds, and we can’t possibly know it all; we can only delude ourselves into thinking so.  Which we nonetheless do, or at least I do, over and over again.

That delusion is an action. And like all other actions, it has consequences. We cannot blame life for being the way it is. We cannot get hung up berating ourselves for past mistakes. We have to move on. We have to do better next time. Get up, and get back to work.

Posted in Aspect I | Tagged , , | 1 Comment

relative importance

Posted on May 19, 2014 by C. M. Condo

Yesterday, I did a whole bunch of things I shouldn’t do with my right arm, including moving some furniture. I can’t support anything for any length of time, but I was able to coax out bursts of strength that enable me to heft a few things here and there. I knew I’d pay for it via substantial pain increase later (that would be today, as a matter of fact), but I had to do some reorganizing after a friend came over last week and put together a new shelving unit for my kitchen.

It is a testament to the new order of things around here that I permitted him to pull everything off of the old shelf and put it on the new one however he liked. Other indicators include the fact that I waited until the day after I got back from my trip to unpack my suitcase, and that I left the old shelf standing in the middle of the room with nothing on it overnight, rather than staying up until 1 a.m. messing with stuff until I figured out where I wanted to put it and what I wanted to put on it.

I’m the kind of person who is no fun at a dinner party because she keeps staring at the plates once everyone’s done eating, squirming in her chair because we’re done eating! We need to get these plates to the kitchen! We can’t just leave them here! What about bacteria?!

I used to derive pleasure from mercilessly organizing everything within my reach.  I only have one hall closet, which houses coats, linens, cleaning products, and the vacuum cleaner. I put vertical shelves in it, and everything is carefully arranged to provide access to all of the items with minimal effort. Even my off-site storage unit is diligently managed, something a friend commented on when she was helping me put boxes in it last month. “You know no-one else’s storage unit looks like this, right?” she teased.

I load flatware in the dishwasher separated by type in an exact right-to-left layout: knives, serving spoons, forks, teaspoons, other. My shoes are kept in labeled shoe boxes indicating style, color, and heel height. Canned cat food is sorted by flavor on top of the fridge, and cans are dispensed in the exact same flavor order every day. Books are arranged on my bookshelf in subject categories, and then within those categories in alphabetical order by author’s last name. I have a roll-top desk with mail slots underneath, and each one has a label: Finances, Bills, Receipts, Misc, Urgent.  There are power strips with surge protectors at every outlet, and every cord that plugs into them is individually bundled and secured with a twist-tie. Jeans and pants are folded into stacks on a shelf in my bedroom closet; each stack is marked: Skinny, Bootcut Short, Bootcut Long, Twill.

This is how I live my life. Organized, planned, efficient, neat. Or rather, how I used to live it. I’ve started to slip. I no longer separate my schoolwork by subject. I throw away magazines I haven’t read rather than keeping them filed by date (yes, I used to do that). I let other people put my things away in the wrong places. Food, ice, and ice packs are jumbled in my freezer instead of segregated into dedicated sections (yes, I did that, too). Other people vacuum my rugs willy-nilly rather than in an orderly progression from the front to the back of the apartment. They miss spots. I don’t care.

I don’t care that my car is dirty. I don’t care that neighbors see me in a t-shirt and no bra, or worse, a robe and yoga pants. I don’t care that people come over and behold my clothes hanging on the room-divider to dry. I don’t care that my furniture is covered in cat hair. I don’t care that my junk drawer is so full of junk that I can’t find anything in it and half the time it won’t even close.  (Why do we bother looking in junk drawers for things?  Things we actually use are never in them.)  It just doesn’t matter. Why was I so worked up about all of this stuff before? Who was I trying to impress? Because now, after a day of reshuffling my kitchen and living room, everything hurts, all out of proportion with the 100-calorie-serving of satisfaction I get from the new, artfully ordered array.

I’m still trying to escape the pattern of habits I cultivated in an effort to look put-together. It was a lot of freaking work, and now it seems silly. Perfectionism is a bug, not a feature. Perfect people are intimidating, not to mention  suspect. What are they compensating for? What was I compensating for? Did I really think that the folded towels arranged by use and size was all that was standing between me and my true self, a flake with an inferiority complex, terrified that people will discover she has no idea what she is doing?

Isn’t that everyone? Everyone who thinks they know what they’re doing most of the time, raise your hand. You, sir, in the back. Go away, you are an aberration, and probably fooling yourself. Life is like building an impossibly complicated machine with no instruction manual. Unable to live with that uncertainty, I exercised obsessive control over what little was under my purview, the entirety of which was encompassed by my appearance. My shell. Which now seems a ridiculously fragile barrier between myself and life’s inherent entropy, one that required an enormous amount of energy to maintain – far more energy, incidentally, than I ever reclaimed upon admiration of the latest patch job.

No wonder I was exhausted all of the time. It wasn’t just that I was too busy – although I certainly was that – it was that I expended so much effort hiding the seams. (You should see me wrap presents.) And now I can’t. And the holocaust that I expected as a result has failed to materialize.

I used to look down on people who went out in public with mismatched clothes. Who pulled bumper stickers off their cars and left the sticky shreds rather than attacking them with a hair dryer and a bottle of goo-gone. Who were less than unfailingly polite. Who let dogs ride in their backseats and didn’t bother to vacuum and wipe down the windows afterwards. Who took their sticky kids to the grocery store with unbrushed hair and clothes they probably slept in. Who left their empty trash cans on the curb days after the garbage collectors had emptied them. Who didn’t buy paper towels and toilet paper made from recycled, post-consumer materials. And so on. And on. And on.

Little details uncaringly overlooked, I used to think.  But my disdain doesn’t seem so well-justified these days. Details require energy. Life is full of choices to be made about things in which we invest effort versus things that we let go. I suffer from life-prioritization-disorder; everything is in the “urgent” category, and nothing is in the “when I have time,” “if I have time,” or “just not gonna happen” categories. But this nerve injury, with my resulting diminished capacity, has forced me to recalibrate my approach. My car is not going to get washed, waxed, vacuumed, and windexed on a regular basis.  Oh, well.  I have to pull half of the items out of my freezer to find the frozen yogurt. So what? It’s not like I’m pressed for time. I don’t look so perfect any more, but go figure, all of my friends are still my friends. In fact, this experience has brought some of us closer together.

It turns out my perfectionism wasn’t just holding life’s uncertainty at arm’s length – it was holding life itself at arm’s length. And despite my diligent maintenance, or perhaps even partially because of it, I succumbed to an incredibly rare and debilitating nerve injury. So rare, in fact, that there is no usual prognosis or “normal” recovery sequence.

So much for beating back uncertainty. The tsunami has arrived and washed away all of my elective importances, leaving only the necessary ones. It’s a strange sort of blessing, to be relieved from the burden of keeping up appearances.  But I needed an excuse to let myself go.  If this injury hadn’t happened, I don’t think I ever would have been able to.

My sister’s wedding was in a lovely arboretum with a fountain. Halfway through the reception a favorite aunt, after a few cocktails, pulled off her shoes and nylons and dangled her feet in it. I can still see her sitting on the fountain’s edge with a big grin on her face, raising a glass to the photographer. I remember thinking there was no way in hell I’d ever let anyone take a picture of me like that. But now, rather than seeing it as beneath me, I realize it’s above me. I aspire to not giving a rat’s ass about what I look like in pictures.

It’s just not that important.

Posted in Aspect I | Tagged , , | 1 Comment

unexpectations

Posted on May 16, 2014 by C. M. Condo

So I wanted a field trip, and now I am on one.

The drive was predictably bad. I took a full twenty minutes for my first break, but only fifteen for the second, and the third and fourth were less than five. There’s a dearth of good places to stop along the latter portion of the drive, and it was too unpleasantly hot to go for a walk, as I had on the first two breaks. Also, I just wanted to get here. Whenever I made this drive in the past, I didn’t bother to stop at all, and it would take well under three hours. This time, it took over four.

It was worth it, though. This is the view from my room:

View from Bay Resort Motel Room 5-2014

I drove Momma Ape’s truck, a large, black SUV covered with an assortment of stickers ranging from liberal to subversive.  In particular, there’s a white decal in the rear window depicting a large dinosaur chewing a bunch of stick figures, with the caption, “YOUR STICK FAMILY WAS DELICIOUS.” I was the one who affixed it there for Momma Ape, but I was still surprised by how much enjoyment I derived from it while sitting in traffic, nearly always in view of a car with a smiling family of stick figures of its own.

Importantly, the truck also has handicap license plates. But every time I pulled into a designated space, I felt like a kid who has snuck into a candy store after hours and is sampling her way through the bins. I couldn’t shake the discomfort that comes with breaking a rule. While there isn’t much competition for handicap spaces in the off-season, I still felt slightly embarrassed as I hoisted myself out of the SUV with my left arm. My self-consciousness insisted that I make a show of favoring my right arm, avoiding partaking in even minor load-bearing activities that are generally manageable, such as carrying a purse or a bag of fast food.

I do not look disabled. I don’t use a walker or wheelchair, I have no brace to support a defective appendage (although I do, in fact, have a defective appendage), I have no limp, no other obvious ambulatory impairment, and as such, no obvious need to take a parking space right next to the door. When an elderly couple pulled into the space next to mine during my second break and shuffled to the entrance of the restaurant, I stayed in the truck, unwilling to present a comparison between their belabored toddling and my own straight-backed progression.

The straight-backed walk, incidentally, has come about as a response to the shoulder injury. My posture, never spectacular even when I was in my teens, had only degenerated over the course of my adulthood such that my head jutted forward, my back had a perpetual hunch, and my shoulders rolled inward. But since my nerve injury, I have been forced to adopt a pressure-relieving conformation rarely seen outside ballet studios.

This is one of the reasons I need to be able to park close to entrances; I tire easily from the effort it takes to hold myself up in such an abnormal [for me] position. Five-plus months of having my shoulder locked in place, plus compression and resection of the nerve, have resulted in significant muscle degeneration in my upper and lower back. Couple that with an inborn tendency for my muscles to become inflamed after anything more than slight exertion, and you have a prescription for frequent and unavoidable exhaustion.

So, in fact, I do need that parking space, even though I don’t look it.

Of course, it’s also important to note that I am still a very poor judge of what I actually look like. In my mirror at home, I’ve grown so accustomed to my emaciated frame that it looks perfectly healthy to me. I even felt a pang of dismay when I was finally able, due to the gain of perhaps five pounds, to retire the extra-small leggings and size-2 jeans. It wasn’t until I wandered into a surf shop here and started trying on summer clothes that I realized how hideously skinny I still am. My bones make up a much greater proportion of my body mass than they should. This isn’t obvious in a sweatshirt and jeans, but it is brought to frank and unflattering relief in a sundress, or worse, a bathing suit. I am now the proud owner of a cute little checked bikini that I may never actually wear.

Self-consciousness notwithstanding, I’m glad I came. I’ve discovered that the tension and stress I feel at home, whether from final exams, or a poor performance at physical therapy, or even just having to use the side of the counter as leverage to open a jar, makes a noticeable contribution to my pain level. Despite the long drive yesterday, after resting for an hour in my room, I was loose enough to head back out and do a little shopping. (And eat frozen yogurt for dinner. After all, I really, seriously, need to gain some more weight.)

I don’t know why I’m so surprised that my pain level has gone down a degree while I’m out here playing hooky. If I were talking to me, the effect of stress would have been the first thing I would have pointed out to myself. Well, actually, knowing me, I probably wouldn’t have pointed it out, since I’m already having trouble circumventing my guilt about my condition and the concessions I’ve made as a result. For someone to assert that I’m making my pain worse by taking on stress would be decidedly unhelpful. Because just as I was incapable of releasing the muscles that clenched in response to the nerve pain, I am incapable of releasing the mechanisms that respond to a stress-inducing environment.

I still have expectations for myself and my performance that are too high. A woman I met at a support group who I’ve taken on as a mentor suffered two brain tumors and subsequent surgeries in her forties, and was forced to reinvent her life around it. Now, a couple of decades removed from that event, she is a valuable resource for me as I stumble through the early stages of my own disablement. Her experience was strikingly similar to mine – she pushed herself to achieve above and beyond her peers for over ten years until she received a full-on, physical smack-down and had to readjust. When I asked her how she learned to manage her expectations, she explained that it’s a self-limiting process. You keeping pushing at your fences until you have the locations memorized, and then you gradually get used to the new order of things.

I’m running into fences all over the place. But rather than getting used to it, I continue to expend too much energy either trying to move them or being angry that I can’t. I know it’s not the best allocation of resources, but I don’t know how to stop doing it. And so it’s no surprise that every few weeks or so, I crash emotionally and slip into a psychological abyss for a few days. It took about two years for her to adjust, my friend said.  And I only had the ablation procedure less than two months ago (and it may not be the last one). But the idea that I could have another twenty-two months of bumping around this mental obstacle course is daunting. And frustrating.

When I talked about my anger, though, she expressed to me that she is still able to dredge up her own anger about what happened to her from time to time. “Go ahead and be a bitch,” she advised, “it works for me.”  She talked about how she still struggles to maintain a sense of gratitude that she still has a good amount of physical function. I feel that, too. I don’t choose to open doors with my right hand, but I could if I absolutely had to. I can still drive a car; she has double vision – all the time – and cannot.  (Or rather, should not, I should say.) Things could be so, so much worse.

Of course, they could be an awful lot better, too, and my friend reassures me that it’s perfectly normal to be angry about it. I need to get over myself, she affirmed, and stop trying to suppress the negative emotions that well up as a result of being disabled and in pain all of the time.

There are my expectations again, and there’s another fence.

So there it is. I’m furiously upset about this and I’m still prowling about in search of an escape hatch that isn’t there. I don’t have the spiritual wherewithal to be grateful, right now, and I may never get it. But there is another goal, and it’s far more manageable, and that is to forgive myself for it. Forgive myself for lowering my expectations, forgive myself for not achieving peace and serenity, and forgive myself for being human.  For being, heaven forbid, just like everyone else.

Be just like everyone else. Isn’t that what I’ve wanted all along? That one, I should be willing to accept.  Gratefully.

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fate vs. faith

Posted on May 12, 2014 by C. M. Condo

I started a blog post yesterday and walked away from it after the third paragraph. It was a post about the fact that I will probably never bear children of my own.

Of course this is upsetting. Few women run up against this reality – whether it’s not to bear children at all, or simply not to bear any more – without having to deal with the fact that they’ve crossed a threshold and the one-way door has closed. I may be crossing it a few years early, but it’s probable, if not likely, that whenever I’d crossed it I’d be in the same condition I’m in now, which is to say, childless.

But for some reason, I just didn’t feel like finishing the post. Because while I’m upset about my fertile years coming to an end, it’s just one more thing in a long list of things for me to be upset about. I’ve been down lately, more down than usual, and sinking. I went to send an e-mail to a friend yesterday about how I could use a field trip because I’ve had a rough week, and realized that I couldn’t remember the last time I didn’t feel that way by the weekend.  I wound up not sending the e-mail.

I do need a field trip, and have arranged to take one – alone – at the end of this week, when I have a few days off between exams, but I don’t expect it to do much good.  The drive will be difficult – so much so that I’m headed down to Momma Ape’s tomorrow to exchange my car for her truck – and I have to pack a ridiculous amount of stuff for a three day trip.  Meds, neck pillows, back pillows, snacks so I can take my meds without upsetting my stomach.  I’m not planning on going out, though, so I’m debating leaving my make-up at home, something I haven’t done while traveling, ever.  But lately, I leave the house without make-up all the time.  Because nobody cares, except me.  And since now I don’t care either, what’s the point?

So I suppose I’m depressed, and I suppose I have every right to be. When fate deals you a hand like this, that’s the appropriate reaction, no doubt. There’s a deep, deep sadness that threatens to overwhelm me whenever I drop my shield and allow a bit of it to trickle in. It feels bottomless. I’m reluctant to keep the shield down for long because I don’t want to wallow and become morose. But it must be seeping in anyway, because everything upsets me now, even things that I was planning to do before I got hurt, like trading in my stick shift car for an automatic.

I live on the outskirts of a major city. Traffic is awful from 7 AM to 7 PM every weekday and many weekends. I have lost countless hours of my life sitting in carbon monoxide soup, my quad muscles throbbing from the constant friction-point square-dance that manual transmission drivers endure when sitting in bumper-to-bumper traffic. No-one chooses to drive a stick shift around here. Not to mention that on the cusp of the hybrid and electric car era, it won’t be long before they’re gone from cars entirely, so it’s not like there’s a case to be made for retaining the skill, anyway.

But the problem isn’t the event itself, but the fact that it feels permanent. This car that I’m trading in, now nine years old with well over 100,000 miles on it, is probably the last stick shift car I will ever own. It’s a cute little hatchback, bright red. I am not a red car person, but when someone gives you a car (thanks, Dad), you take it and don’t nitpick about the color. Nonetheless, it’s got this adorable ladybug vibe. It looks like it belongs to a young, vivacious woman. But if I was not a red car person before, I certainly am not one now.

I’m not anything I was before, unless you count exhausted, sad, lonely, and angry, all of which I’ve struggled with for years. The problem with life changes isn’t that they change you in so many ways, it’s that, in so many ways, they don’t. Whatever issues you had before are still there, often all the more visible for the fact that the clouds you used to hide them in have been swept away. It feels grossly unfair. If nothing else, you’d think that when something like this happens, you’d at least get a clean slate to work on.

But I didn’t; pain and sadness seem permanently etched, at a time when I’m ill-equipped to handle either of them. I’ve never thought I was this great person, but at least I used to be useful to people. Now I don’t even have that. I don’t have anything. I sat alone in my apartment on Mother’s Day because I didn’t want to stress my injury by taking an elective trip to my parents’ house three days before a necessary one. I tried calling some friends, but they were all either with their families or en route to or from, and it seemed the height of selfishness to call my Mom on Mother’s Day to talk about how sad I felt about the fact that no-one was ever going to wish me a Happy Mother’s Day.

I’ve given up on waking up in the morning and hoping that I won’t be in pain. I’ve given up on expecting people to be around to talk to and help me whenever I need it; I know I have to work around their schedules. I’ve given up on expecting to be well at some point in the future, planning an activity around that, and then having to un-plan it. But for some reason, when I confront giving up the expectation that this will end, the fear that it won’t overtakes me.

Imagining that a year, or two years from now, I will still be here, typing away at my laptop standing up, planning errands and appointments around a limited functional capacity, and, worst of all, spending most of my waking hours alone, terrifies me. And anything else that is attached to that in some way, be it spending Mother’s Day alone or acquiring an automatic transmission car, is enough to tip me over into that welling fear that churns my stomach and closes my throat. Who knew I was harboring such dread about retracing my mother’s steps? But my mother was (and still is) married. I am alone. And if there’s anything scarier than going through what she went through, it’s the idea of doing it by myself.  Staring down the barrel of another lonely week, followed by a seemingly endless string of them, even my impressive store of anger fails to overcome the sadness. I know life isn’t fair, but… really?

Disabled, alone, stranded, unable to work, unable to play… how do people live like this? Why the hell am I still in school, for that matter? What is the point, if I’m not going to be able to make use of my education? What is the point of any of this at all? What was so wrong with what I was doing before that God decided to yank it away, root and branch? If there even is a God. I thought I’d reconciled the idea of a loving God in a cruel world, but my recent experience at the business end of cruelty has shown that reconciliation to be more fragile than it seemed.

How am I supposed to be reconcile this? Because I know I can’t change it; if I’ve learned nothing else, that one’s been hammered home. I don’t care if I’m supposedly strong enough to handle it, because I don’t f***ing want to. I want to go back to what I thought God wanted for me, to having a purposeful life, and I can’t find a path through this that leads there, and I’m sad and scared and I don’t want to do this any more, not any of it. This isn’t right and I demand a recount, because I just can’t wrap my brain around this as being my destiny. I hate it so much, and it’s too painful, psychologically as well as physically, and I don’t know how to deal with this kind of pain day in and day out.

What sort of higher purpose could possibly come out of this experience? Because what I suspect is that there actually isn’t a purpose to this, or to anything else; that fate is unfeeling and bad things just happen to people. Children die, pets get run over by cars, and some people have to live in constant pain for their entire lives. And when life feels so callously random and pointless, it’s hard to have faith in God, or a process, or anything at all.

I prayed last night, lying in bed.  I pray every night before I go to bed, but for weeks now, it’s been rather cursory, my brain running through the words without assigning relevance or meaning.  But in bed last night, unable to sleep, I clasped my hands together and whispered my sincere desire to have my burdens lifted.  And for some reason, I felt a little bit better.   My faith in the presence of some power outside of us has been shaky, of late, but for the first time in months, I did feel as though someone was listening.  It isn’t much, but I took it gratefully.  Physically, I’m still alone, but spiritually, perhaps I’m not so alone as I thought I was.

It’s more than I had yesterday.  Hopefully, it’s enough for today.  I have pain, I have anger, and I have doubt.  If the little candle of faith that was lit last night can withstand a day of those strong winds, then perhaps I can find a little space for hope in there with them.

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tribute to Momma Ape

Posted on May 11, 2014 by C. M. Condo

I’ve mentioned her a few times in this blog, so regulars know that Momma Ape has been struggling with a host of pain and mobility issues since I was a teenaged ape. But I wanted to take this Mother’s Day as an opportunity to dedicate a whole post to the wise, resilient, amazing woman who continues to be my loving, patient guide through this ordeal.

Back when Momma Ape first starting having problems, not much was known about Fibromyalgia and Chronic Fatigue Syndrome. As recently as the early nineties – in fact, still today, in some cases – a woman could walk into a doctor’s office seriously unwell and be pushed right back out the door with a diagnosis of it’s-all-in-your-head. But my Mom is neither hysterical nor easily intimidated, and she relentlessly pursued doctors and therapists until she finally encountered people who took her seriously and started working to help her.

Unfortunately, because mainstream medicine had not yet assimilated a full complement of chronic pain syndromes, Mom was often forced to turn to alternative [to] medicine specialists, most of whom promised the moon but never delivered. While it’s important to point out that a handful of the dozens of practitioners she saw did offer relief, some of it significant, there was a prevalence of mind-over-body treatment modalities, based on the idea that it is the sufferer’s emotional or spiritual state that is responsible for her pain.

That may be useful for people with temporal, stress-induced issues like stomach upset or headaches (not migraines), but for those with genuine, physical ailments underlying their pain, it only serves to heighten the guilt and doubt they feel about their maladies. I can’t imagine the pummeling Momma Ape’s self esteem endured as she pursued treatment after treatment, grappling with insinuations that she was somehow personally responsible for her condition.

Even now, under the care of specialists who were able to correctly diagnose and treat my injury, I suffer from guilt and doubt. The first doctor I saw did not take me seriously and treated me for something I didn’t have, undoubtedly expecting that the placebo effect of having needles jammed into my neck would give me relief. (It didn’t.) The first physical therapists treated me just like any other patient, causing me to overwork and overuse muscles that became damaged and inflamed, making my injury worse instead of better. It was Momma Ape who swooped in and directed me to pursue other options.  This is not right, she said.  You should not still be in so much pain. I’ve spent my whole life ignoring my body’s signals. I had no idea that my treatments were not helping. But Mom knew, and she pushed me to keep going and keep looking until I found the right people.

Those of us who benefit from the efforts of the pioneering doctors and patients who came before us are usually too wrapped up in dealing with our own issues to reflect on why it is that we can walk into a doctor’s office and be taken at our word, or how it is that the treatments we receive came to be. I had a front row seat for Momma Ape’s journey, and even now – especially now – I am humbled by her strength and tenacity. It is because of her, and men and women like her, that I have been able to receive the pain medications and treatments that are keeping me functioning. Twenty years ago, I would have been crippled by this injury, unable to drive, to work, or to even continue to live on my own, unassisted. I might very well have been under veritable house arrest for the rest of my life.

Would I have been able to maintain the optimistic spirit that bore my mother up over the years? I have a name and treatment regimen for my injury. She had no such luxuries. She is my lady with the lamp, but she had to fumble through in the dark. And through it all, she refused to give up. She held true to her inner voice that told her that she was right and there was more that could be done. It takes a powerful self-assurance to travel the path she followed; to pursue something that she herself might only receive limited benefit from so that those who came after her would be taken care of. I don’t know if I could have managed it, and I’m immensely grateful to her and others like her, whose efforts meant I didn’t have to.

Thank you. Thank you, Mom. Thank you to everyone who refused to take no for an answer, who refused to believe that their problems were all in their heads, and who insisted on being heard, and taken seriously, and treated with dignity. You are among the saints and angels. We who follow your path gratefully take your hands as we make our own ways through the wilderness. Because of you, we are diagnosed sooner and treated more aggressively, and are able to avoid some of the serious consequences that you now bear with such grace. We owe a debt we can never repay. All we can do is honor you and speak the truths you have taught us.

Happy Mother’s Day, Mom. I am the luckiest little ape in the world.

Posted in Aspect I | Tagged , , , , | 1 Comment

more information, and less

Posted on May 9, 2014 by C. M. Condo

This past week, I was given some new information. Life is generally reliable that way. If you’re not sure what you should do about something, chances are you don’t have all of the information yet, and if you hang around and wait, some more will come along and add a bit of clarity.

I have been feeling bad, and not just physically. If my depression were a pool, I’d be making steady progress towards the deep end. I figure I’m in up to my armpits right now, and, more and more often, I find I’ve wandered in above my head. I can’t climb out of the pool, but I brought a raft, and it’s anger, and if I use that, I can keep my head up even as the water gets impossibly deep.

So that’s been my tool, of late. Not even anger so much as defensive crankiness.  And of course, the very people who deserve it the least are the ones most often at the business end of it. One of my best friends said to me, as we were walking back from lunch yesterday, “You have to stop being surprised that people want to do things with you. You have to start realizing that people like you and want to help you.”

It was a novel idea to me, but she’s right. My first instinct is always to withdraw, to assume the negative rather than the positive.  I was mercilessly teased and bullied growing up, and at some point I cultivated the habit of instinctively pulling away from people around me to guard against it. I said as much to my friend, and she said, “Those people are gone now. We all grew up.”

We all grew up.  Have I?  I don’t know how a grown-up is supposed to handle this.  I know how to act towards other people, but as far as how to act towards myself, I’m at a loss. I don’t know where the boundaries are; how much is too much to ask of a friend? How do I know if my expectations are reasonable or not? From the inside, I see a pathetically weak, broken woman, unable to participate in most activities, her life depressingly small, full of ‘less than,’ rather than ‘in addition to.’ I don’t understand why anyone would want to be around a person like that.

But that’s not who my friends see; according to my best friend, it’s quite the opposite. They see someone strong and tenacious in spirit, who refuses to allow her life to be any less than it has to be. And they want to be around that person. And I suppose I would, too.

But on the inside, I feel weak, broken, and used up. I’m angry with myself for hating my old life, as though I somehow brought this on myself. I don’t want to be strong any more. I want to find the smallest possible life I can so I can lock myself inside it, close my eyes and plug my ears, and stop having to be anything at all. I want to give up, but I don’t know what that looks like, and I have this irrational fear that whenever I do give up, it will have been too soon, and if only I’d waited a little longer I would have seen that there is a way out of this after all. And then I will feel stupid that I resigned myself to an awful future that never came to be.

I pushed too hard in physical therapy on Tuesday, and my shoulder became swollen and inflamed as a result. On Thursday, while the therapist was gently working through the area to make sure I wasn’t holding any tension, I admitted to her that I was scared I wasn’t going to get any better. She assured me I shouldn’t think about it that way; it’s just that some people are more sensitive than others, and we needed to modify my treatment progression to account for the way my muscles reacted. “You just respond differently,” she added.

I’m so sick of being different. I wish I was just like everyone else. Some people are upset to find out that they’re just like everyone else. I’d be ecstatic.

I have a doctor’s appointment in a couple of weeks, at which I will have to arrange for another medical parking pass at the university.  Mine expires at the end of the month, and I’ll need to renew it for my summer class.  Back when I applied for it, it seemed unlikely that I’d be needing it for the whole semester.  Now the end of the semester is here and I’m not much better than I was when it started, and it seems naïve to have assumed that I’d be well enough by now to stop using it.  Three months ago, getting better was a ‘when.’  Now it’s an ‘if.’

It is starting to look like I will need a hang tag for my car, too. When I’m loaded down with a heavy bag or box, I cannot walk very far, and in some cases I’ll need to be able to park close to the entrance of my destination and use a handicapped parking space.  But I continue to meet my fate sideways, my head turned back towards my past and what I’m leaving behind, so I don’t have to stare down the narrow, black tunnel in the other direction.

I am reminded of when Momma Ape finally broke down and applied for handicapped license plates for her truck. The rest of us celebrated that she was finally asking for something she had long been entitled to, but I remember she was more resigned than happy. Now I know why. It’s the same reason why I continue to make only little, reversible concessions for my physical limitations.

I can put a hang tag in my glove compartment and pretend I don’t have it, but if I drive around with handicapped plates, I might as well have them emblazoned on my chest like a scarlet wheelchair, announcing to the world that I am broken beyond repair. I feel like everyone will be looking at me and wondering what is wrong with me, and either judging me as someone who is taking advantage, or pitying me as someone who has to lead a confined life of supplemental props and handles. Special. Different.

Less.

Posted in Aspect I | Tagged , , , , , | 2 Comments

impossibilities, and the glory of the mundane

Posted on May 7, 2014 by C. M. Condo

At the end of each physical therapy session, I get ice and electric stimulation on my shoulder. I lie on my back on one of the tables with my knees bent and my head propped up, and they have posters on the wall for people to look at, posters that I’m sure they perceive as being helpful, if they think about them at all.

Like this one:

U381

If you can’t read it, it says (I have it memorized), “Life’s only limitations are those we make.”

Please.  Life is full of limitations that we didn’t make for ourselves, and carrying a surfboard in the early morning sun has absolutely nothing to do with either the sentiment or its patent ridiculousness.  Not to mention that, for me, a picture of someone with two normal, perfect shoulders is almost as upsetting as the sentiment.

Today in the Post, there is yet another feel-good story of perseverance-despite-disability clickbait next to some anti-clickbait about Ukraine, this one about a girl who opted to have her club feet amputated so she could be fitted with below-the-knee prosthetics, and how she now goes rock-climbing and performs in an Irish dance troupe, and claims she wants to “defy what society thinks about what is possible.” A doctor who works at fitting amputees with prosthetics claims that a number of his patients are paralympians, referencing Iraq and Afghanistan veterans who “didn’t want to accept any limits.”

Good. Good for all of them. They don’t know how lucky they are. I know it’s in poor taste for someone to refer to amputees as “lucky,” but I need to draw a line in the sand here. That girl is the exception, not the rule. The reason “society” thinks competitive hiking isn’t “possible” for people with prosthetics isn’t because of the prosthetics. It’s because it’s so physically demanding that most normal people would have trouble, no matter what kind of feet they have. I want to grab that girl by the shoulders and shake her. She’s not making the world a shinier, happier place, with her neon sneakers and sock collection (socks but no feet – isn’t it cute how perverse she is?), perpetuating the fiction that perseverance always yields results.

There is a very small subset of human beings with the genetic gifts that allow them to become high performance athletes. Some among that subset have disabilities. However, and I cannot make this point often enough, most people, disabled or not, are not in that category. Most of those same people, however, like to think that they could be if they just put forth the effort. They read stories about a war vet who competes professionally in some sport or another with a prosthetic appendage or two, and they relate right in. They think of themselves as the same plucky, courageous type, who would also emerge from the cocoon of a birth defect or an IED as a glorious butterfly with gleaming, prosthetic wings.

But for every person who goes rock climbing with prosthetic feet, there are thousands more who put their feet to far more prosaic uses, like, say, going to work. (Or, more likely these days, standing in an unemployment line.) These people are not going to go kayaking with their prosthetic elbows, they are not going to set a new land speed record with their prosthetic hips, and they are definitely not going to do wheelchair marathons.

What’s most frustrating of all is that their lives are no less spectacular for that, despite the fact that they aren’t attractive, they aren’t athletic, and they don’t have an inspiring story that lends itself to a three-minute closer for primetime news. For most people with disabilities, the simple fact that they can function nearly as well as people without them is what is truly amazing.

Such functioning is the result of at least as much effort as that girl puts in to her twelve-mile hikes. But most of that effort goes on behind the scenes, in doctors’ and therapists’ offices, or at home with families who see the pain, the medications, and who have installed the ramps and lifts and bars in their houses so their loved ones can function by themselves. It doesn’t make for pretty pictures or uplifting news articles. But it is, in a way, even more heroic because of it. The amount of work that goes into “normal” is all the more laudable when it is invisible. You don’t get a medal for being able to walk to and from a bus stop, no matter the effort it took to get there.

So the next time you read a story about elective amputation, instead of thinking, “wow, that is totally me,” perhaps you ought to be grateful that it isn’t you. Handicaps are not superpowers, you are not just like them, and whatever you do now is closer to the upper rather than lower boundary of your talents and abilities. Most of us are not sparkling butterflies but dull, unpretty moths, going about doing our pollinating when no-one is paying attention.

The unseen effort that goes into the mundane – now, that is something worthy of our admiration.

Posted in Aspect I | Tagged , , , , , | 2 Comments

the not-so merry-go-round

Posted on May 3, 2014 by C. M. Condo

It’s been such a long week. I don’t know why I keep saying that. All of my weeks are long weeks. Plowing through a haze of medication is an improvement over plowing through a haze of pain, but in a sick way, I miss the five-alarm-fire pain I had before the nerve ablation shut it down. That sort of pain, as soul-sucking as it was, focused the mind and body in a way that this dull, constant ache, that ebbs and flows but remains largely manageable (relatively speaking), does not. I have just enough mental space now to ruminate. If I try to lose myself in activities, I will pay the price later, in soreness and in ice packs, which is what happened last night.

I left my part-time job yesterday afternoon to run a single errand, which ballooned into three when I couldn’t find what I needed at the first place I stopped.  I kept getting back in my car and driving to another place, and then another, such that by the time I got home, I only had twenty minutes to eat lunch before getting back in my car to go a massage appointment.

While all of this was happening, I knew I was overdoing it, but dammit, I wanted to get everything on my list.  I didn’t want to put it off until later; I have other things I want to do this weekend.  I know I should have gone to one place, two at the most, and then gone home to relax for at least an hour before heading back out. I know I should have saved the last items for the next day, or perhaps the day after that, and so what if I didn’t finish everything in one weekend.

But I’m sick of having to treat myself like a cripple. Could it have been only a couple of days ago that I fretted to my psychotherapist that I was making too much of my injury, enjoying having the excuse of being injured to trot out whenever I didn’t feel like doing something? Because today I would give anything to be able to go back to the way I was before. Hassled, frantic, exhausting though it was, I could do things. I miss all of the normal, thoughtless things I used to do.

I could do so much in a single day. How could I have hated it? Because I certainly hate this. I feel like an actor who’s been cast in the role of a lifetime, only to discover she’ll be stuck playing it for the rest of her life. Playing a role, that’s what I do, when I’m in class, or at work, or talking to friends, or at physical therapy or massage therapy. I’m in pain all of the time, but I don’t like talking about it because it’s unpleasant and people don’t know what to say. But faking that it’s not a big deal, day in and day out, because I’m sick of it being a big deal (even if it is), takes a lot of physical and mental energy.  By Friday, I’m no less exhausted than I was when I was trying to prove to the world how super-productive I was.

I used to be one of those people who hated her life so much that I kept praying for a hurricane or an earthquake to come along and turn my world upside down, because anything had to be better than the status quo. And now that the volcano has exploded and the lava has demolished my house, I want the old life back so badly it turns me inside out.

I sure don’t want this. But what do I want? If I didn’t want the life I had before, and I don’t want the life I have now, where does that leave me?

What I want may be hard to to figure out, but the one thing I do know is that I want to be able to slip in and out of it if I need to, like a sundress. I’m happy to wear it most days, but every once in a while I want to take a break from it and wear something else.  Be someone else.  But the problem with life is that you don’t get to step outside of it for a day or two whenever you need a recharge. It never stops happening; it never stops demanding that you pay attention to it and react to it. I would like nothing more than to get in my car and drive to the beach this weekend, and spend the next 36 hours all by myself, watching the surf, smelling the ocean smell, and letting the wind scrub me clean of all my little anxieties and obsessions.

But instead, I’m stuck here, in a life of unrelenting hedging, narrowing, and projecting. I have to concentrate on every single thing I do. As I stand in my kitchen and type this, I have to check my shoulder every few minutes because it will have hunched up. I have to do that when I’m meditating, too, because tension will find its way back in when my mind is elsewhere. I have to project a cheerful attitude at work, trying to convince people that I’m managing well, because I don’t want pity, and I don’t want them to tell me to take some time off. When I plan my weekend, I have to gauge how much driving I’ll be able to do and schedule around that, as well as what kind of activities I sign on for, because if any of them involve sitting, I will have to have space around that to come home and lie down.

I was talking to a friend after dinner last night and she wanted to hear all about my graduate program. My shoulder pain was so intense from having sat at the restaurant for over an hour that I badly needed to get home and put an ice pack on it.  But I smiled and somehow managed to answer her questions, because I’m flattered that she’s interested, and grateful to be out of the house at all, as even this small outing would have been impossible two months ago. I want so desperately to be normal, so I push a little harder in order to keep pretending that I’m not in pain all of the time, and that I’m perfectly able to do all of the things that healthy people do.

But pretending is all it is. And the pretending wears me down. I feel like I fight and fight all week long, fight the sadness, the anger, the frustration, the listlessness, the anxiety that crops up when the physical therapist presses my shoulder in such a way that exquisite pain goes shooting through my back. She’ll ask me if it hurts and I’ll say yes, but as casually as I can, because I don’t want her to stop. I just want it fixed, and I don’t care how painful the fixing is. I let my massage therapist dig into me so hard on Tuesday that I was exhausted after thirty minutes of forcing my muscles to relax during her excruciating ministrations. But I would do that every day if it would help; I want her to get in there and do whatever needs to be done and I don’t care how much it hurts because please, god, please, please, somebody, please, fix it.  Fix me.  Put my humpty-dumpty shell back together again, whatever it takes.

I know that I should be grateful that I’m not in screaming pain all of the time, and that I will be able to get at least a little better, and that I have the financial resources to get this kind of medical care. I should be grateful that I have friends who care about me and check in on me. I should be grateful that I have loving pets, that I can afford to have someone come and clean my apartment, and that I’m still able to do some things that bring me pleasure, like baking cookies or bashing Oprah in my blog.

And I am grateful, for all of those things. As lonely as this all is, I’m grateful I can come home and drop my armor on the floor and start a post for this blog, and sit and cry, and then get back up and finish it without worrying or bothering anyone. So, just like last weekend, I will rest this weekend, even though I don’t want to, and force myself to stay home as much as possible, even though I hate it. And by Monday of next week I will feel well enough to strap the armor back on and head back out to the field.

And then drag myself home on Friday and fall apart again.

Posted in Aspect I | Tagged , , , | 2 Comments