something wrong

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

You don’t belong here. That’s what keeps running through my head, around and around, rattling noisily like an old toy train on a short track. You’re not really disabled. Your injury isn’t that big of a deal. There’s nothing biochemically wrong with you that would explain your muscle inflammation and fatigue, so it must be your fault.

My fault. That’s what I keep thinking. All of this is my fault. I tried to make my body do what I wanted and I failed. Not for any discernible medical reason, just because I’m weak, physically weak, temperamentally weak, unable to deal with discomfort and fatigue. I never have been athletic, and it’s my fault for not trying hard enough, for doing things wrong, for being unwilling to push myself past a certain point of pain or exhaustion.

All of my blood tests came back completely normal. I was screened for each of the expected muscle disorders as well as the exceedingly rare ones. The rheumatologist told me the bright side is that I’m exceptionally healthy and there’s no reason I can’t exercise as much as I want. And, unlike the doctor from a few days ago, he was kind and gentle when he said these things to me. But it didn’t matter. Because what it meant was that rather than being the kind of person who was able to push herself to the limits of what her body would handle despite a muscle enzyme deficit, now I’m just someone who isn’t able, for some reason, to push her body as far as other people push theirs. The former is honorable, but the latter is suspect.

Between that and my humiliating experience at the pain doctor’s earlier this week, I have no idea what I should or shouldn’t be doing with my body any more. Normal blood panel notwithstanding, I was in an excruciating amount of pain yesterday after physical therapy, and not because I let them work me too hard. In fact, even sitting for a few minutes and waiting for the rheumatologist to come into the exam room caused me enough pain to upset my stomach (not that it takes much, considering all of the medications I’m taking). When he told me there was no reason I couldn’t exercise, I nearly burst into tears right there.

I felt as though I’d suddenly been unmasked as an interloper in an exclusive club, and just as suddenly, ejected from it. I don’t know where I fit now. Am I disabled or not? Do I have a serious injury or not? Is it taking so long to recover because, subconsciously, I don’t want to recover? Because my body feels so much better when I ask it to do so much less? Is that even relevant? I mean, doesn’t everyone feel better when they do less?

I don’t know what to do; I don’t know if I should even trust my internal signaling. Should I push myself physically or not? How much of my pain is “real” pain?  How much is normal, post-muscle-exertion pain? How much is expected muscle and ligament strain, leftover from several months of incapacitation? I was stiff in physical therapy yesterday. Why? I can feel some swelling in my right shoulder today. Was that supposed to happen as a result of my exercises? Is that normal? What is normal?  What does it feel like?  How much pain am I “supposed” to be in?

I woke up covered in sweat and exhausted this morning just before 6 AM. I’d had a strange dream, of being in a dirty, abandoned lot with a group of homeless people. I was not one of them, I knew – and they knew – because I could get up and leave whenever I wanted, and they could not. We sang songs together anyway, my voice harmonizing beautifully with theirs; I have always been good at that sort of thing. I had a large canister of nuts with me and I distributed them around in handfuls, until there were none left. I did not take any myself. I even gave the canister to a man who asked for it. I left. I came back. We sang again. I was getting ready to leave again, pulling my jacket and keys from a corner, when I awoke.

Even though I am incapacitated, it seems that I am not, as far as evidence-based medicine is concerned, disabled. I can visit that place, and be accepted there with grace and kindness, but I don’t live there. I don’t belong there. But there was no other place to be, in my dream. I don’t know where I went when I left; the dream skipped that part.

If I don’t belong with the handicapped, then where do I belong? Because it doesn’t seem like I belong with healthy people, either, not with my easily inflamed muscles, my resulting susceptibility to injury, my exercise intolerance, and my months-long bouts of fatigue. My family doctor, who I’ve been seeing since I was an adolescent, believes that Momma Ape and I are unusually interoceptive, or more acutely aware of our physiological state than is normal, able to detect minute changes in internal states, including pain and exhaustion, that most people are not aware of.

Even supposing that’s the case, it doesn’t explain anything, nor does it suggest any potential solutions. There’s no doubt that Momma Ape has endured an injury cascade resulting in constant pain and some loss of physical function. There’s no doubt that a nerve entrapment occurred in my right shoulder. What remains clouded from view is why. Are we truly different from other people? In what way? We are already at the outskirts of current medical knowledge; any farther out and we will have exceeded them, if we haven’t already.

For now, all we have is the cold comfort that something is wrong with us, and it’s not something that you can see, test for, or quantify in any way with existing medical science. Just fragile. Easily injured, slow to recover. You just have to take our word for it. How can you tell the difference between people like us and those who exhibit Münchausen syndrome?

You can’t. And I can’t. Not even when it’s myself.

Posted in Aspect I | Tagged , , , , | 3 Comments

just a girl

Posted on July 1, 2014 by C. M. Condo

So, obviously, I’m going to have to go back and look for another doctor.  Again. And in light of recent events, not to mention historical ones, this time, I’m going to choose a female.

Before I get going on this rant, I want to say that many of the male doctors, professors, and dentists that I’ve come into contact with have treated me just like they would any other patient or student, regardless of my sex or gender. (Contrary to popular belief, those are two different things. Look it up if you don’t believe me.) This is in no way intended to paint all men with the same brush.

But.

All of the doctors, professors, and dentists who have condescended to me rather than treating me like an adult capable of independent thought have been men. All of them. Now, in most circumstances, this is annoying, but otherwise not worth making a big deal about. I’m pretty sure the dentist is going to check my teeth no differently than he checks anyone else’s. The professor is willing to talk to any student in his office, and will pass any student with a passing grade.

However, now that I have a rare, obstinate, and extremely painful nerve injury to my right shoulder, with my left shoulder making noises about heading in the same direction, I can no longer afford not to be taken seriously, starting Day One, first appointment. This is, as they say, a big f***ing deal. I don’t have the time, energy, or patience, for sexist crap.

I’m a woman in her early forties who has never visited a doctor if she didn’t have to. I do not abuse pain medication. I do not exaggerate or engage in histrionics when it comes to my health. Moreover, I am about to graduate summa cum laude from a highly accredited university with one of the most challenging science programs in the state, if not the country. I have accrued an impressive store of knowledge in the fields of anatomy, physiology, genetics, and cell and microbiology. I’m no MD or PhD, but I am more than capable of reading and understanding primary research articles that pertain to those fields, and have in fact done so on more than one occasion in order to educate myself as to the nature of and purported treatment modalities for my condition.

In short, I am a far more educated and less credulous patient than 95% of the people that walk into a doctor’s office. And as such, not only do I not appreciate being treated like a teenager with neon pink headphones and a blow-pop sticking out of her mouth, I thoroughly resent the implication therein that I cannot be trusted to deliver unembellished facts about my injury and resulting disablement.

It takes an enormous amount of effort to retain my composure when speaking to practitioners about my situation. By the time the doctor walks in, I will have endured the car drive or ride to get there (sitting increases my pain), the filling out of at least a half a dozen forms (writing increases my pain), and waited either in the waiting room, the exam room, or both, for anywhere from fifteen to forty-five minutes (see “sitting,” above.) I am, therefore, in quite a bit of pain by the time the doctor comes in, exacerbated in no small part by the anxiety that arises as a result of knowing that what I am about to tell him or her is highly unusual, at best.

I know the words coming out of my mouth, taken out of context, sound crazy. I always endeavor to speak as explicitly and emotionlessly as possible when detailing my symptoms. I wear no make-up. I do not dress provocatively. I am unfailingly courteous to the staff and respectful of the doctors. I do all of these things while having to relive the crushing emotional ordeal that my life has been over the last several months without becoming emotional about it.

In response to all of that yesterday, I was ignored and dismissed by an egomaniac a doctor who was probably about my age, although I’m sure he assumed I was much younger, as many people do when they don’t bother to take a good look at me. He was not the least bit interested in any information that would distract him from his conclusion that I was making a mountain out of a molehill, a conclusion he may very well have come to before he even stepped into the exam room. And not only he, but his staff as well (sh*t rolls downhill, as they say), treated me like a nuisance rather than a client, resulting in one of the most humiliating and upsetting experiences I’ve yet had to deal with in pursuit of treatment.

These are the facts:  I am a woman. A pretty, young-looking woman, unfortunately. A certain subset of men, who seem to be concentrated in fields requiring extensive post-graduate education, see a young-looking, pretty woman, make an immediate assumption as to her [lack of] intelligence before she even opens her mouth, and then proceed accordingly.

I never had a chance with that doctor yesterday. I gritted my teeth in an approximation of a smile as he showed me all of the different muscles in the rotator cuff on his shiny little iPad (and misidentified a few of them before correcting himself), all the while speaking to me very slowly, as though I were a small child. I tried to divert him, explaining that those were not the muscles that were the problem. He brushed my explanations aside, of course, because he couldn’t have cared less.

For the record, the muscles that attach my humerus to my scapula, in a region known as the rotator cuff, are not at all weak.  What prevents me from load-bearing with my humerus is pain, not weakness. It is the muscles that abduct and adduct my scapula to my cervical and thoracic vertebrae that have gone awry. And I happen to know (thanks to Dr. Black, my anatomy professor) that those are the levator scapulae, the major and minor rhomboids, the trapezius, and, to a lesser degree, the anterior serratus  and pectoralis minor. The only muscles in that group that the asshole doctor tested were the levators, of which the one on my right side is overdeveloped due to improper involvement in scapular rotation and adduction. He discovered that I don’t have any loss of muscle strength there. Really?  You don’t say.

The whole experience was utterly obscene, and worse, it’s not the first time I’ve had to deal with that sort of treatment at the hands of men.  In fact, I have stopped using the cleaners that is closest to my house – a non-inconsequential choice considering my condition – because I was tired of being rudely and aggressively hit on every time I walked in.  (The owner would pick up my comforter when I brought it in and put it up to his ear, telling me it was talking to him, telling him my secrets.  I am not making this up.)

Women with chronic health issues, many of whom did not reap the benefits of an in-depth course in anatomy with a lab using real animal corpses each week, should not have to deal with these dick-swinging troglodytes (no insult meant to troglodytes) in pursuit of medical care, particularly considering everything else we are going through. I myself cannot afford to waste any more of my time or insurance company’s money being patronized and condescended to.  And so, the only course of action that remains to me is to just not see any more male doctors.

As I said above, I have not chosen this solution because all male doctors have treated me like a spoiled child. I have chosen it because all of the doctors who have treated me like a spoiled child have been male. (Anyone who can’t understand the difference will have their comments deleted. We deal in complex, grown-up concepts here.) I am not just a girl. Yes, I am anatomically female, and yes, I am also female-gendered, but neither of these disqualifies me from being a person worthy of trust and respect.  I don’t care who you are or where you’ve been; it doesn’t give you a pass to treat women like small, furry animals.  Ever.

Since trust and respect are essential to ensuring the correct diagnoses and treatments regarding my condition, I simply have to go where I know I will get them every time. And that is from another girl.

This is the ostensibly post-sexist world we live in. #YesAllWomen, and still waiting.

 

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

what is real

Posted on June 30, 2014 by C. M. Condo

“…what this looks like is a bunch of pings and dings and myofascial issues causing your symptoms…”

I felt my eyes starting to well up.  I was perched on a chair, in considerable pain, in this new specialist’s exam room, this new doctor that I’ve been trying to get in to see for over a week, that Momma Ape moved heaven and earth to get me an appointment with first thing Monday morning, and he was actually telling me that this life-changing, near-constant pain I was in was just a bunch of ‘pings and dings.’ He said I had good muscle strength in my arms. He said he thought my sleep problems were due to depression. In short, he basically sat there and told me that he wasn’t taking me seriously at all.

I stopped him. Barely holding it together, I tried to explain that what he was describing as a bunch of pings and dings had completely changed my life. How I had been in near-constant pain since October. How nothing had worked to abate it until I got the nerve ablation three months ago. How I was still unable to do any of the things I used to do: swim, play guitar, sit in class, drive a stick shift. How I had to drop classes. How I wasn’t able to work.

He didn’t seem impressed. He ordered a series of nerve tests, MRIs, and a referral to a psychiatrist who could work with him to try to manage my pain and my sleep issues.

So not only am I not being taken seriously, but now I have to schedule and find a way to get to three more appointments before anything else can be done for me. He gave me no new medication. His manner seemed to imply that not only did he not believe me when I tried to explain the severity of my pain, but that even my choice to switch doctors was suspect, as though he inferred I was just shopping for more pain medication. His recommendation to see the psychiatrist only added to that impression.

It all seems so reasonable, typed out on this screen, more tests if my current treatments aren’t helping, bringing in an expert on anxiety and depression to contribute to the handling of my sleep issues. But the look on his face, unruffled, emotionless, gave the impression that he had stopped listening me five minutes into the hour-long discussion and examination. And as the hour wore on, I became less and less able to think clearly, to advocate for myself coherently. I’m so fragile, physically, emotionally. Doctors don’t seem to realize that what to them is just an appointment is to the patient their whole and only reality. He gets to walk out of that room and forget about me. But I don’t.

Was there any more I could have said to him to elicit some recognition of the pain and suffering I had endured for all these months? As I was driving home, all of the things I wanted to tell him but didn’t think of in the moment flooded back into my head. Good arm strength? Compared to who? Compared to someone who doesn’t swim or lift weights? Who didn’t work for four years as a veterinary assistant, lifting and restraining dogs weighing fifty pounds or more? Why didn’t I say I couldn’t go out at night any more? Why didn’t I mention that I lost twenty-five pounds by the time I had the ablation procedure and hadn’t been able to gain even half of it back? That I had been going to massage therapy and physical therapy for months and barely been able to move the needle on fixing what was wrong with me? Why didn’t I explain how much energy it was costing me just to sit in that exam room while he pulled and prodded at me, to remain calm, to stem the flood of tears that threatened to overtake me when he belittled my experience in that detached, clinical tone of his?

And all of the doubting voices in my head, that I had finally managed to muffle after beating them back for so many months, became a roar. This is all in your head. You’re making a big deal out of nothing. You haven’t even tried to go back and do normal things. He’s right not to take you seriously. You’ve been fooling yourself this whole time, making yourself and those around you believe you have a real disability even though you don’t.

Oh god, no, please. Have I gone through all of this for nothing? The shots, the car, the toe-curling injections and massages, all for a few pings and dings? I was filled with a despair I haven’t felt since before the nerve ablation. By the time I got home, I was sobbing so hard I could barely see. What have I done?

Was there anything I could have said? I’m a woman; a petite, attractive woman, at that. I suspect that no matter what I said to him in that room, as I swallowed my tears and forced myself, barely, to keep my voice from shaking, trying not to appear hysterical, trying not to come across as a drug-seeking junkie, that this doctor was not going to take me seriously, was not going to show me sympathy, and was not going to be able to make any real difference in what was going on with me.

I had hoped – taken in once again by that cruel mirage that hope is – that I would finally be able to make some progress towards having this injury really and truly dealt with. But he implied that he didn’t even think the problem was even necessarily in my shoulder[s]. He ordered MRIs that he didn’t expect would show him anything. He ordered nerve conduction tests in my upper and forearms, suspecting carpal tunnel.

I’m overwhelmed by the feeling that I have just made my situation worse, rather than better. Depressed? Of course I’m depressed, you asshole, let me stick an ice pick under your shoulder blade and leave it there for eight months and counting and tell me how that affects your mood from day to day.  Tell me, how does that make you feel?

How dare he imply that I am exaggerating? How dare he insinuate that I am not feeling the muscle weakness that I know is there, that my physical therapists have made so abundantly clear to me? How dare he suggest that the reason I can’t sleep is more due to my psychological state than my physical one? I was sleeping just fine before this happened. My insomnia was quite well managed for over a year with the minimum prescribed dose of a non-habit-forming medication.  But I couldn’t possibly be having trouble sleeping because I’m unable to maintain a pain-free sleeping position, could I?  Why would I think such a thing?

I don’t want to go down all of these diagnostic garden paths just to prove him wrong. I can’t bear the thought of long and painful nerve conduction tests on both arms, followed by a diagnosis of carpal tunnel, and getting sent on my way with a wrist brace and a pat on the head. Just what I need, more tests showing that there is nothing wrong with me. I don’t think I can take it.

This is real; too real; I would have set it aside long ago if it weren’t. I couldn’t possibly invent this horrific ordeal that has taken away so much of my life, swimming, music, work, social life, possibly even my career. I feel like I’m going crazy. It’s not like I haven’t tried to go back and do the things I used to do; I’ve got the resulting days of mind-numbing pain and fatigue to prove it.

I want to shake that doctor until his eyes roll back in his head. Please hear me! Why won’t you hear what I’m trying to tell you? Please, I want so badly to be taken seriously, for someone to treat this with the urgency that has me typing this post, the screen blurred through the tears that are still streaming down my face, my shoulders heaving from the sobs I can’t control.

I know there is something gone terribly, horribly wrong in my right shoulder, and now my left shoulder is starting down that same road and I’m scared and I’m exhausted from the effort it takes to look normal on the outside and I don’t know what else to do. I want to call him back and scream at him for making me feel this way. And I can’t. I know it will make things worse.

I have to go and set up these new tests and appointments and drag myself out to them and suffer through more pain and more sleepless nights for what I fear will be no good reason at all. I’ve lost the ready acceptance of medical advice I used to have before this happened, and with it, the willingness to subject myself to batteries of tests that may or may not show anything.

But there’s nothing else I can do. I just have to keep doing what I’m told, for all the good that’s done me so far, trying not to rethink everything I’ve done, everything I’ve been through, fighting against the fear and doubt that have now overtaken me. I feel small, helpless, as powerless as a prisoner in a mental ward, my screams and cries dismissed as ravings of a mind unhinged, unable to advocate for myself, unable to get anyone to believe me when I tell them that my pain is real and unrelenting.

Even though it is. And now it looks like it will continue, for god knows how much longer. And I don’t know how I can bear it. I’ve exhausted all of my coping mechanisms, good or bad, dangerous or indifferent. I’ve got nothing left in me that isn’t pain, physical pain, emotional pain, every kind of pain imaginable; I don’t have any bravery or strength remaining to deal with it, to try to disentangle myself from it, to try to act as if it’s not that bad. I used it up getting to that doctor’s appointment this morning. I didn’t know I was going to need so much for afterwards; I didn’t leave any in reserve.

And now I’m too distraught to do anything else. I just have to cross my fingers and pray that my new, unbelieving doctor will at least refill the prescription for the medication I’m currently taking to manage my pain so I can get through the next two weeks before I see him again.  Because if I have to stop taking it, I don’t know what will happen.  My imagination has failed to compete with reality for going on nine months now.  I daren’t challenge it again.  Better if I don’t know what’s going to happen next.

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

steamroller

Posted on June 25, 2014 by C. M. Condo

I’ve surrendered. Officially. Fate has worn me down, and I have conceded. I’ve finally realized I cannot hold the tsunami back any longer, and so I have just parked it and let it come. But as I look up at the size of the wave, at the the sheer enormity of what has happened to me, I’m suddenly overwhelmed. It’s happened. The unspeakable, unknowable horror of a serious and life-changing injury has happened. A tragedy that we dread, that we comfort ourselves could never happen to one of us, that we cannot peel our eyes from when we see it in someone else, has happened. To me.

I was in my first major car accident when I was fourteen years old. Momma Ape was pulling out of a fast food restaurant in the late afternoon. Another driver had motioned to let her in, and then, out of nowhere, a speeding commuter came flying up the lane – probably trying to make the light – and plowed right into my mother’s car, totaling it and I think his own, too.

I did not take it well. I still do not actually remember the impact. I have a snapshot of his car as a blur, coming into our line of sight, and then I’m sitting on the sidewalk while my mom talks to the police officer. I had gotten a little blue matchbox car from somewhere, and I busied myself with it like a small child, dismantling it a piece at a time, first the wheels, then the body, followed by the windows one by one. I gently worked the wheels off of the axles, and then the seating compartment out of the chassis. I remember taking that car apart more clearly than I remember anything else that happened that day. That year, even.

I remember the numbness. I had never understood what someone meant when he said it felt like he was at the end of a tunnel, colors bright but indistinct, voices and noise suddenly tiny, collapsed. That day, I suddenly realized how apt the description was.

I wish I could find that numbness now. Even tears seem a shallow response to the terror that has overtaken me. My stomach is physically upset. I have to keep stopping as I type this to sit down on the floor and wait for the nausea to pass. It’s happening. This is really happening. What in God’s name am I going to do now?

Relatively early in this process, I had accepted the fact that we don’t have much control over what goes on in our lives. (I couldn’t not accept it, considering the circumstances.) Or at least, I thought I had accepted it. Certainly, I had performed the necessary mental acrobatics. But it hadn’t reached my soul. Until now. Until this very moment.

I need to sit down again.

I feel like my entire life’s journey up to this point has been traveled inside a litter, only glimpsing the world outside through gauzy curtains, protected from sudden sights and sounds, smells and the weather. And now, it’s as if I’ve suddenly fallen out of it and am blinking into the hard, white light of a bare and desolate street. Lying on the ground, looking up, the buildings seem impossibly tall, the wind is rough and cold, and the sun is cruel and harsh. There is no-one else here, or at least, no-one else close enough for me to feel them. The world is so big, and I am so very, very small. How could I have possibly thought that my tiny, fluttering ministrations could have had any influence whatsoever on this endless, wild place?

Is this what a panic attack feels like? I don’t think that’s what’s happening. My heart rate is up, but not alarmingly so. And even as I write this, something inside me backs away from the realization of it, aware that this is too big to process all at once, not right now, perhaps not ever. I can’t stay here; I need to get up and get myself inside one of those buildings, any of them, out of the wind, out of the sun that is already starting to burn.

Is this why, when I stared at myself in the mirror today – my whole self, not just my thighs or my zits – I didn’t recognize the woman? I used to take such care in my appearance. But instead of the polished (or at least presentable), put-together person I used to portray, a loose, unfettered creature stares back at me. I’ve become one of those people who doesn’t really care. It’s never seemed less important. Particularly when compared to the tsunami that has just washed away almost everything I thought I knew about the world. About myself. About anything at all.

We don’t know anything, really. We collect facts and experiences and arrange them in our minds and call them the world, stringing them together, making connections where none should be, imposing a pattern where none existed. We live behind the gauze and it filters the information coming at us in ways specific to how we think the world is. We are shielded from the winds and the sun, the freezes and droughts; they come to us tempered, like gentle waves lapping the shore, all evidence of the undersea volcanoes that set them off long since fallen away.

It is only when are confronted with a crisis, a great and inexplicable loss, that the curtains are pulled aside and we see what is really out there, all around us. We see it cares for us not at all, so insignificant are we to its rumblings and storms, its tectonic shifts. It is not even alive, in the sense that the misguided proponents of the Gaia theory purport it to be. It simply is. Like my irrevocably damaged right wing is. Not a who. A what.

The tendency to anthropomorphize the world we interact with and its events may be a misguided coping mechanism, but it is a gentle one. Whether or not the world has meaning, in most circumstances, it hurts us not at all to ascribe one. Until something like this happens, and then we are left with only two choices: the first, that the world is a masochistic menace, or the second, that the world has no sense of being, good or bad, at all.

Most of us choose the second; it is more comfortable, and has the benefit of being the more likely of the two. I can take some relief in finally understanding that the world is not out to get me, I just got caught up in one of its tornados. Wrong place, wrong time. Nothing personal, Ape, just the weather. It seems an unlikely source of solace, but once you’ve realized that the outcome has so little to do with you, it’s actually a load off, releasing you from the obligation to handle something the “right” way.

Not that we handle much of anything, really. Usually all we can do is react to it. That’s what all of my fighting and wailing and carrying on has been; a reaction, if perfectly normal one. But it seems I’ve finally exhausted my supply of angst, at least for now. I’ve found shelter in an empty building, a place I’ve never been before, a place in which I may not be allowed to stay. But for this moment, I’m OK. I’m alive and breathing, and strangely free of dread. How this happened, I don’t know.

But I can’t know. And that will have to be OK, too.

“Well I’m a napalm bomb for you baby
Stone guaranteed to blow your mind
I’m a napalm bomb for you babe got to tell you one more time
To sit down, stand up, go home, back to Raleigh
Stone guaranteed to blow your mind momma, yeah…”

-James Taylor “Steamroller”

—

Posted in Aspect I | Tagged , , , | 3 Comments

this time it will be different (really, I promise)

Posted on June 23, 2014 by C. M. Condo

The nerve is growing back.

There’s no denying it. There is a reactivated trigger point near where my collar bone joins my first rib that has dutifully responded to manipulations by both my physical and massage therapists in every session in the last ten days.

About three months have passed since the nerve was burned away, and probably a few more weeks will pass before it becomes something that will need attending to. Now that I’ve been through one full cycle, I have a better idea of what to expect.  Since we’re all about learning here in the ape preserve, here’s a study guide of planned improvements for the second time around.

First, I am not going to put any more things off. Every time I pretend that my damaged shoulder is nothing more than a temporary inconvenience, I set myself up to be disappointed. Starting now, I will either do something or I will not do it, end of discussion.

It’s too frustrating and upsetting to keep confronting things I want to do, hemming and hawing over whether or not I should try to arrange to do them, and then having to push them farther and farther into the future as my shoulder fails to significantly improve.  It’s better to simply discard them until the facts on the ground change. After all, it’s unlikely I will spontaneously forget all of the things I would like to do upon becoming physically able to do them again.

This handicap is no longer a suspension of my normal condition.  This is my normal condition. My life has changed.  Not been thrown off balance, not paused for a period of time, not off to one side somewhere while this runs its course.  Changed.  As in, not the same life.  Totally different life, in fact.  Moreover, certainty is no longer possible; uncertainty is the new status quo.  No more endlessly adjusting the old routine to compensate.  It’s time for a new routine, or better yet, no routine at all.  If my pain doesn’t follow a set schedule, there’s no point in setting an activity schedule that demands constant remodeling.

Having read this far, I’d imagine you might be a wee bit skeptical. How will I, with my propensity to label, organize, compartmentalize, and stratify every last element of my life, be able to make such a wholesale realignment? You’d be right to hang on to that skepticism for a bit. It’s going to take a while to turn this boat around. I’m not wired for spontaneity; I don’t like it. I prefer routine.

I like to do everything the exact same way, in the exact same order, using the exact same tool, every single time.  I have been eating the same thing for breakfast for at least four years straight. Far from being excited when I go out of town and have to eat something else, I’m ornery about it, and happy and relieved when I get back home and can have it again.

I don’t like changing the way I do anything in any part of my life, so if I don’t have to, I won’t. This explains why my struggle to include all of the elements of my old life in the exact same proportions as they were before has yet to yield the desired result. With fewer raw ingredients at my disposal, the same recipe just won’t work any more. And like my cookie bars (of which there have now been seven batches that have gone wrong; that would be Cookie Bars: 7, Ape: 0), I kept pulling failure after failure out of the oven, every single time.

But if the solution you’ve chosen is wrong, then perfecting your technique isn’t going to make it right.  Instead of using a new recipe, I kept going back and trying to do the old one better, certain that if I could hit on the right combination of ingredients, it would work out like it used to. But the problem was the recipe itself, rather than the baker – for the bars as well as for me.

I don’t like sketching my life freehand.  I prefer to have a diagram to copy, preferably one mapped over with one-inch squares so I can follow it as closely as possible.  I didn’t trust myself to come up with appropriate responses to life’s various challenges all on my own. So I developed the habit of gauging what I was supposed to do by trying to figure out what a normal “someone else” in my position would do, another single woman my age, say, with a full-time job and a family to take care of (never mind that I don’t have those last two things), and then try to adhere to that as closely as possible. I used to get pretty close, but since last October, I haven’t been able to come anywhere near it.

This supposedly perfect woman wouldn’t leave work early because of pain, as I have done more than once, and she wouldn’t consider not going into work simply because she didn’t sleep enough the night before. She couldn’t afford to miss as much work as I’ve missed; she’d risk not being able to pay her bills, or worse, losing her job.

Nor would she have the resources to pursue doctor after doctor in an effort to achieve the best possible medical care available. She’d have to take whatever meds she got from whichever doctor she saw and that would be it. She wouldn’t be able to cultivate new pastimes, such as a blog, nor would she be able to afford a lot of the medical services I receive; she’d just have to manage as best she could.

Never mind that a “normal” person in my position probably wouldn’t have been able to keep working. Never mind that she may well have bankrupted herself pursuing all of the same treatment avenues as I have, rather than just soldiering on, gritting her teeth and ignoring the pain as best she could. None of that ever entered my mind.  All I could think was that I was failing to live up to the standards of this ideal superwoman, and thereby managed, in the overburdened emergency shelter I’ve set up in my brain for homeless anxieties, to make room for an entire city block’s worth of guilt.

This pattern and the ensuing doubt that I’m doing things “wrong” somehow has dogged me my whole life; I didn’t just learn it after I got hurt. But whether or not it served some purpose before, it’s certainly not doing me any good now.  It’s time to admit to myself that the coping mechanisms I used to use aren’t working any more.  And that means no more following patterns or diagrams, comparing myself to some idealized version of a good person I have in my head; a version, I might add, that I’ve concocted solely from source material obtained from TV and the internet which, in all likelihood, doesn’t even exist.

It means changing everything, throwing away all of those messed up cookie bars and starting over from scratch, and that’s not something I’ve been willing to do.  Even unhelpful coping is a form of coping, and if I’m coping with something, then it’s still just something that’s happened to me; it’s not something that’s permanently changed me and become a part of who I am. If I stop tilting at windmills, I won’t be coping, I’ll be living. I will have stopped fighting the assimilation of my injury, and it will have won, which means that I will have lost.

But it was never supposed to be a fight in the first place. The compressed nerve is just a thing. It’s not out to get me; it simply exists. I’m the only one doing any fighting. And I’ve been fighting for so long that I can hardly remember what kind of life I’ve been fighting to get back. It’s possible that I didn’t like it all that much. It’s probable that I just wanted to keep it because it was familiar and I knew how it worked, and like a lot of apes, if I’m forced to choose between familiarity and utility, familiarity wins every time.

Language is perception.  As long as I say this happened to me, I’m not saying this is me.  And the former is no longer applicable.  This is my life now.  I may hate it, resent it, and rail against it – often – but that isn’t going to change it or make it go away. I should know; I tried. I should take comfort in the fact that I went down swinging.  And now it’s time to pull anchor and let this boat go where it needs to go.

And this time, it will be different. Really. I promise.

Posted in Aspect I | Tagged , , , , , | 3 Comments

team of one

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

My impressive run of cookie successes has been broken by the deceptively simple bar cookie. Two batches have had to be thrown out, and a third seems destined for a similar fate.  The center remains in a near raw-cookie-dough state, despite being baked for double the prescribed amount of time.  It’s now ensconced on the bottom shelf of my fridge, but I don’t have high hopes; it was still quite gooey when I finally gave up and stuck it in there late last night.

Two days ago, on the advice of a friend, I dipped my toe back into songwriting. I fired up the software, hooked up a keyboard and mike, and cobbled together a verse and a pre-chorus. Then, suddenly tired, I shut it all back down. My heart wasn’t in it. Deprived of my primary songwriting vehicle, the acoustic guitar, I’m stringing notes together practically at random, creatively rudderless, unable to derive any pleasure from the lackluster results.

And in physical therapy today, my third reevaluation was almost identical to my first and second ones, performed ten and five weeks ago, respectively. Flexibility: improved. Comfort/stamina in seating position: slightly improved. Strength: no improvement. Afterwards, I was in too much pain to do my regular strength exercises. The same exercises I’ve been doing for fifteen weeks, apparently in vain.

It’s all so damned tiresome. I’m sick of it. I’m sick of this string of identical physical therapy sessions, day after day, week after week. I’m sick of putting myself through excruciating massage therapy to get relief that never lasts more than an hour or two, and sometimes makes me feel worse instead of better. I don’t even know why I’m doing these things any more. It doesn’t feel like they’re helping. It doesn’t feel like anything is helping. The slate of things that I am able to do has been stuck at its current amount since the nerve ablation, and those things are still harder and more complicated than they have any right to be, and still take far more time and energy than they have any right to take. And it’s no longer cute or interesting. It’s just wearing me down.

Even my current pain doctor has run out of solutions for my inability to herd together more than four or five hours of unbroken sleep.  (Correction: last night, thank heaven, I actually got it up to six-and-a-half.) I’m supposed to call another pain specialist for a second third opinion, but I’m dreading it. The number of treatments I’ve endured is absurdly large, particularly considering how ineffective most of them have been. The only enduring feature of my pain symptoms is their utterly random variability in strength and location. I have to keep all of my prescriptions in a written list because there are too many for me to reliably hold in my short term memory. I’m not sure I have the energy to start all the way back at the beginning to bring yet another specialist up to speed.

There was a summer day camp I used to attend as a child. I was so young I barely remember anything about it other than ponies and dodge ball, and I only remember the dodge ball because there was one time, when my cohort was playing another cohort, where I somehow managed to be the last kid standing on my team.

The other team, pretty much at full capacity, for some reason could not eliminate me. I don’t know if they were lousy shots or if I was just having a good day, but it continued on that way – me against seven or eight other kids – for quite a while. Occasionally, I’d be able to tag one of the opposing team and get a teammate back, but that teammate never lasted for more than one or two rounds. After this happened three or four times, the counselors called the match, and I remember I got special recognition for staying in the game so long.

Just like back then, I’m the only one on my team now, dealing with the balls that keep getting flung my way. Every once in a while, a friend can come in and spell me out for a turn or two, but then she has to go back to her own life and I’m stuck fending for myself again. Yesterday, I stopped by a big box store on my way back from the rheumatologist to pick up some cat litter. It wasn’t the usual place I go, but I was running low, and it just happened to be on my way home. It was inside a shopping mall. I didn’t think anything of it going in. I didn’t realize, until I was on my way out, that that meant I wasn’t permitted to take my cart into the parking lot.

I was suddenly apprehended by the very real possibility that with the other bag I was carrying, I would be unable to get the 25-pound box of litter from there to my car.

I had parked in a handicap space, using my hang tag. It was about fifteen yards from the mall entrance. There were a couple of employees hanging out outside who may or may not have seen me struggle to get the box of litter from the doors to the curb. I stopped and set it down perhaps ten feet from where they were standing, and looked out at my car. It seemed impossibly far away. I should have asked them for help, but I didn’t know what to say. It was late afternoon – too late for me to be out running errands, really – and I couldn’t get my fatigued brain to construct a suitably brief explanation as to why I couldn’t carry the box myself.

So I picked it back up and dragged it out to the car alone.

I know I shouldn’t have. It’s no better for me to overload my good side than it is to bear too much weight with my bad one; it throws my spine out of alignment, which places undue stress on my back and neck.  The last few steps were agony.  After hoisting the litter into the car, I climbed into the front seat and rested my head on the steering wheel, exhausted. Goddammit. I can’t even do a simple errand by myself any more. I felt defeated. Just as I had when I left the massage therapist on Friday, the doctor on Monday, and the physical therapist this morning. Because what’s the point? Why bother doing the right things if they aren’t helping? Why avoid doing the wrong things if I’m not going to get better anyway?

I don’t know how much longer I can keep living my life like this, every single task requiring an in-depth evaluation of the circumstances at hand before being attended to, by me or someone else, or perhaps not at all, over and over and over, as weeks stretch into months that threaten to stretch into years. And of course, everyone keeps telling me not to do things myself if I don’t have to. Except that more often than not, I do have to. Even when I don’t want to.

It’s not that I don’t want to call someone up and ask him to pick a prescription for me, or haul my trash can to the curb, or get the 25-pound box of cat litter out of the back seat of my car, where it still sits. It’s that I don’t have anyone to call. I’m a single woman in her forties, living alone. All of my friends work, or are parents, or both. I do not have daytime companions available to assist me with the little things.

Or rather, what they consider to be little things; for me, that category is decidedly underpopulated. So I do them myself. Because it’s easier that way, psychologically, if not physically. Because I can’t go another day staring at my dirty floors; I can’t put off picking up that prescription; I can’t wait until the weekend to get more cat litter. Because my pain level and recovery progress seem only tangentially related to whatever I do or don’t do, and in that case, I’d just as soon do that stuff myself rather than trying to figure out how or when I could get someone else to do it for me.

I see other patients in various medical and therapy offices with their spouses or children to drive them, carry things for them, keep them company. But not me. I’m all alone, with my purse loaded down with forms, meds, food, and water, in addition to the usual purse things, plus another oversized bag holding seat and back cushions so I can sit in a chair in the waiting room if I have to wait.  I drag this baggage through round after round of this frustrating game, and I don’t know what prize waits for me when I finally reach the end of it, if it ever ends, which I’m starting to suspect it won’t.

Today is June 19. In two more days, it will have been eight months since I started this ordeal. I suddenly recall sitting in my swim coach’s office last Fall, wearing a cervical collar, a week or two after the initial pain onset, explaining that I was going to be out for another three or four weeks and would have to drop out of the class.

Another three or four weeks.

Back then, I was still looking forward to getting back to my usual activities once this had run its course. Back then, I could still imagine what it would be like to pick up where I’d left off. Back then, I was still able to occupy myself with planning around this minor setback. Those thoughts are long gone, my former way of doing things grown faded and hazy, like a dream I woke up from hours ago, fragmented, senseless.

This isn’t the dream any more. This is real. It’s not a game. It’s my life. Managed or not managed, by me, alone.  That’s how it is, and that’s how it’s going to be.

I’m going to go call that new specialist now.  And pack up my things for another round.

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

stress and release

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

So, two days from now, in my enduring quest to discover all of the things in my body that don’t work right, I will undergo a post-exercise-stress blood panel. Over the last few years, I’ve gotten a lot of blood work done in response to the months-long bouts of fatigue that have plagued me every so often, but it was always at least a couple of weeks after the exercise that may [or may not] have caused them, and as such, any chemical signatures thereof had long since been flushed from my body.

This is the first time I will be getting a blood draw within 48 hours of a physical stress exercise. I have been instructed by the doctor to go ahead and do a “normal” muscle workout, between 24 and 72 hours before the blood panel.  Normal, he said.

Normal! I couldn’t wait. A full workout, doctor’s orders. (Or rather, a full lower body workout – even I am aware that my upper body is still off-limits.) And this morning, as I picked out machines and started moving through reps, I reveled in isolating the different muscle groups, putting actual weight on the stacks, making my physical body – this amazing human body we each get a version of to play with – do real, load-bearing work. I didn’t realize how much I’d missed it. I didn’t realize what an enormous part of myself had been lost when my shoulder pain forced me to stop doing it nearly eight months ago.  I walked out of there feeling happier than I have in months.

The doctor said not to go all gangbusters on it, and I don’t think that’s what I did. The problem is, it seems I have zero experience with being on the inside of a normally functioning body. So I don’t have a working gauge as to how much is too much, or just enough. As far as I can tell, I did less than half of what former athletic trainers and instructors would have put me through.  How that relates to “normal,” though, I couldn’t say.

As I scaled up the weight on my lunges, I remembered one trainer in particular whose upper body workouts always finished with a set of push-ups to failure. (Yes, that means exactly what you think it means.) Just to make absolutely sure, I assume, that I hadn’t left a single muscle group undamaged. Other than good-natured griping, I never complained. I always did everything he told me to do. I did everything any exercise trainer or fitness class instructor told me to do. Because as far as I was concerned, that was the whole point.  Wasn’t it? Isn’t that what everyone else does? Otherwise, why bother with the trainer or class at all?

I don’t know.  I don’t know what “everyone else” does.  I thought I did, but the more doctors and therapists I talk to, the more I suspect I may have been just a smidge off base on that.  Perhaps a bit more than a smidge.

Now, at physical therapy, I am adjusting to the unfamiliar experience of being relied upon to inform the therapists when I’ve had enough. As soon as my muscles start to burn and weaken, I’m supposed to stop. If an exercise causes me pain, I not only have to stop, I have to tell them exactly where it hurts.

I’d had no idea that was how it was supposed to work.  After I let them push me too far a couple of months ago (see trainer, above), the therapist sat me down and laid out my responsibilities in no uncertain terms. And a good thing, too, because I never would have thought that verbal feedback was expected rather than discouraged. I never would have thought I was supposed to be reporting my body’s response to the assigned tasks.

I was, and remain, skeptical. I’d always assumed that the therapists knew what they were doing and wouldn’t ask me to do anything that I wasn’t supposed to do.  Far be it from me, I thought, to suggest to these professionals that I might not be capable of doing what they were asking. I’m having trouble getting used to the idea that it is actually designed to be a negotiation as opposed to a priced-as-marked purchase.

It makes sense now that I think about it, because of course, it’s hard to tell by just looking at someone what her body is feeling. I can’t speak for others [obviously], but making sure that pain doesn’t show on my face is a skill I’m proud to have acquired. It turns out to not be such a valuable skill after all, but fortunately for me, my therapists and assistants are wise to me now and watch my body instead of my face for signs of muscle strain and exhaustion.  In effect, they are not just rehabilitating my body, they are also training me to pay closer attention to it, to listen to what it is telling me and then act on that information rather than squelching it.

I had taught myself to persist with an exercise until I thought I “should” be done, rather than stopping when my body started sending up warning flares.  Having been in the habit of ignoring pain for so many years now, I have no idea where the cutoff point is actually supposed to be. I had always assumed I was setting it too low. (Certainly, my frustratingly marginal performance improvements seemed to back that up.)  Now, I have to come to terms with the idea that I was approaching it from the wrong end; I’m supposed to be making adjustments according to the experience itself, not the result thereof.

And even now, armed with this new knowledge, I’m worried that I haven’t pushed my muscles hard enough for the correct chemicals to show up on the test. I’m nagged by the unfounded feeling that I was too easy on myself, despite the fact that walking to the mailbox an hour later, my legs still felt like jelly, one nearly buckling as I descended the porch steps. But that’s just normal, right? I mean, the whole point is to damage your muscles so they martial the body’s resources to repair themselves, larger and stronger than before. How do you know if you’ve done it right if they don’t weaken and complain while you’re doing it?

I don’t know.

All of the times that my body responded normally to exertion have suddenly flooded  into my head. Like those years of swim practices. I gave out before the other swimmers, sure, but looking back on those grueling hour-and-a-half workouts, there were probably a lot of other kids who would have given out, too, if they had tried to do swim team, which most of them didn’t.

When I first started jogging about five years ago, I couldn’t get to a quarter mile without having to stop and walk, but eventually, I worked myself up to where I could manage a couple of miles with relative ease, if rather slower than most.  I even did a couple of 5K’s, coming in with respectable times in the top half or third for my age group. What if that’s how most people are? What if most people can’t run more than a couple of miles, but don’t know it because they never bothered to find out?

Anxiety is vibrating through me like a drug now, eight hours later, my muscles only just barely sore from this morning’s gym activities. What if all those times I was hurt or fatigued, it was simply because I’m just especially ungifted, physically?  What if I actually am on the normal distribution curve, just way out at the low-performing end of it?

I won’t know for another few days whether my muscles are exhibiting “normal” post-workout soreness or the debilitating pain that I remember from earlier forays into weight-lifting and strength training. What if I just had a low pain threshold before? (Although if that’s the case, I’m pretty sure I can strike that possibility from the list now.) How disappointing it will be a week or two from now when I get the results of the blood work, and just like all those other times, everything has come back perfectly normal.

Maybe I really could have run that mile, back when I was a kid. Maybe just don’t have the right temperament. Maybe I’m just not capable of pushing myself hard enough.

I don’t know.

But in 48 hours, I will be one step closer to finding out.

Posted in Aspect I | Tagged , , | 3 Comments

planted and stunted

Posted on June 15, 2014 by C. M. Condo

Why are so many of the other chronic pain/health challenges blogs I read so happy and positive all the time?  It’s highly suspect. I cannot believe those people wake up every morning full of gratitude and spiritual peace. Those things are hard to find and harder to keep, even under the best of circumstances, and I challenge anyone to find me a person capable of doing a perfect job of it every hour of every day.

The last thing the internet needs is more I-can-make-the-world-a-better-place-just-by-saying-so fantasizing. I’m not interested in greeting-card platitudes with pictures of sunsets and flowers and fairies and angels. An ability to find some true spiritual peace is the prize you get for making it across the river. But if that’s all you have to offer, you’re just gloating and I really couldn’t care less. Screw the medal and plaque. I want to know how you got through all that water.

I need to know how to get through it. As much as I pillory the spirituality of those able to employ their faith to help them resolve their difficulties, a thread of jealousy runs through my anger. I don’t want to start every day in this resentful place. I hear people tell me they meditate first thing in the morning.  In principle, I’m not against adding a morning session to my daily complement, but in the mornings, I get out of bed because I have to, not because I want to, because the pain and soreness insist that I address them, rested or not. If I was comfortable enough lying down to meditate for five or ten minutes, I’d just as soon go back to sleep.

Pain is quite the unfriendly alarm clock. It doesn’t have a snooze button. It jangles you awake whether or not you’ve slept enough, whether or not you have anywhere to be, and whether or not you think you have the energy to embark upon your morning routine. There is no way to turn it off. It either fades out on its own after an hour or so, or keeps pulling at you throughout the day, like gum stuck on the bottom of your shoe that won’t wear off.

If I’m well-rested, it’s generally OK, and once I’ve had some tea and a hot shower, my internal machine comes online and I can adjust my mood accordingly. But if not, then I have to go through the now tiresome rigamarole of examining my activities for the next few days to see what I can cancel, in order to be able to do what’s necessary in the early part of the day, and arrange to go to bed around 7:30 or so to ensure I can make up the sleep deficit.  A sour feeling brought on by being so relentlessly unreliable will assert itself in my stomach, upsetting me and putting me off of food, and I will stand here at my laptop and drink tea, isolating, wallowing, resenting, and not feeling spiritual, peaceful, or useful in any way.

And no doubt, none of this is novel any more, not to me, and not to anyone reading this blog. My reluctance to make plans, and my ability to call up the wherewithal to cancel them, is now built-in. There are rare and fleeting throwbacks to my old self, magical days where I am able to sleep in, my shoulder pain stays at a low hum, and can go about my day in something like normalcy. But generally, I display the halting, apologetic persona that is now my default program. Occasionally I am able to make – and keep – a plan to see a friend, but it’s vanishingly rare, and my friends, perhaps out of respect for my poor state of health, or to spare me the knowledge of what I’m missing, have stopped asking me to do things with them.

Without my realizing it, I’ve become rooted here, in a dark, unkempt corner of the garden, a corner that people rarely even notice, never mind visit. Here I am shielded from the hot sun and harsh winds to which I’m so vulnerable, but at the expense of being allowed to flourish. Instead, I console myself with the small animals that take refuge with me, and try not to pay too much attention to the more popular flowers greedily drinking in the afternoon sun.

I know I’m getting better. Little by little, I’m getting stronger. Even as the nerve grows back, the pain seems less insistent than it did before. It’s easier to hold my back straight, open a door, move a gallon of milk from the shopping cart to the back seat of my car. I’ve gained some weight – not enough, but noticeable – and people are telling me I look better overall. I don’t mean to belittle any of these things; they are welcome, and important.

But I suspect that I’m better largely because of the concessions I’ve had to make; limiting my activities, canceling plans whenever I start to get even a little bit sore or run down, arranging to get at least nine hours of sleep rest as many nights as I can, leaving gaping swaths of unstructured time in my days so I can rest. It’s a way of being that I’m reluctant to get comfortable with, and am frightened I will not be able to justify, to myself or anyone else. What if I have to stay this way in order to stay well? What if I can never get back to full capacity? How will I support myself? How will I stave off the loneliness that muscles in as soon as I pull out my phone and start disengaging from commitments?

I don’t mind being here too much right now, as moody as I must seem to those following this blog. (Maybe I should write a post about a good day; they do sometimes happen.) But it’s hard to keep from forecasting a gloomy future when I’m stiff, sore, and underslept. Friends try to reassure me; they jump on my sentences before they are out of my mouth, peeling the wrappers off of bandaids before I can finish explaining where it hurts. I am grateful for their enduring solicitude, but it’s not what I’m asking for.

I am well off the beaten path now, and suggesting that there’s no point in thinking this way or that I don’t know what’s going to happen a year from now is a mere repetition of the obvious that has long since been carved into the surrounding trees. I know. I know I don’t know. Please just stop with the rubbing alcohol and let me finish.

It doesn’t matter that it’s obvious.  It matters that it’s how I feel, and that it’s more than justified.  I need my friends to sympathize instead of trying to talk me out of it.  This is where I’m planted, at the moment, stunted, unable to fill out into any more space, possibly forever. I’m not saying these things because I want placation. I’m saying them because I just need to say them out loud, pull them out of this dank corner and force them into the light, make them smaller, lighter, dust bunnies instead of monsters under my bed.

And then, I need someone to take me out into the sun with her to play, even if I can’t stay very long or do very much. The shade is gray and stifling. I do want to be able to grow again.  I’m scared; anyone would be scared. I’m still fragile, still barely held together.  Hold me; warm me. Stay with me.

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

waves

Posted on June 14, 2014 by C. M. Condo

My family has been vacationing at the seashore for a couple of weeks in late summer for as long as I can remember.  When I was a little girl, perhaps eight or nine years old, my favorite thing to do was to venture out into the ocean on my kid-sized raft in the early morning, when the tide was low and gentle. My father would park his beach chair at the water’s edge where he could keep an eye on his scrawny, plucky daughter, but the surf didn’t worry me. A strong swimmer already, I knew I could handle it. I would stay out there for a half hour or more, rocking up and down as the waves slid underneath me.

As I got older, it became more fun to play in the breakers, riding them in with a decidedly variable success rate. I got knocked around quite a bit, and usually finished the day with several handfuls of sand in my suit, but I loved it just as much. I was a fearless pro by the time I was a teenager, automatically curling into a ball when I got tumbled and resurfacing moments later with a smile on my face and sand in my teeth. The ocean never sent me anything I couldn’t handle. Unless the lifeguards had deemed the surf too dangerous for swimming, I spent more time in the water than I did on the sand.

At physical therapy this week, I happened to be there at the same time as another woman with a similar injury to mine, who started her course of therapy this past March, about a week after I did. As I rested between stretches, I enviously watched her perform with ease the therapeutic exercises that I can still barely manage.

I remember her primary evaluation; the wincing posture at the edge of the chair, a havoc of pain evident in her voice and on her face. But this past week, there was no trace of that beaten-down demeanor; it had been replaced by the cheerfulness of a patient nearly fully recovered, her strength and flexibility almost back to normal.

I was struck by how different she looked in such a short period of time, until I remembered that it hasn’t actually been all that short. It’s been three-and-a-half months, give or take. Which probably seems like forever to her, and certainly explains why she looks so much better. After all, that’s how the majority of injury recoveries progress; counted in months, or for a lucky few, weeks. Not years. Or open-ended, the final result too far off to be molded into a threshold, never mind a goal.

I still have that beaten-down demeanor, although I have learned to suppress it.  Now, unless I’m particularly exhausted, it no longer shows in my face.  The passage of time is irrelevant to me; my recovery progress is so incremental that it’s all but imperceptible. I’ve only added a couple of tasks to my initial slate of exercises; movements that are still so challenging that I have not been able to increase resistance on any of them.  Progress is measured in increasing reps from say, three to five, or, for a couple of them, as far as ten.

The addition of a new exercise this week has had the usual effect of increasing my stiffness and pain load; this has become so normal that I don’t bother mentioning it any more unless it intrudes upon my normal activities (such as they are). Momma Ape does not approve of this pattern, nor of my way of handling it, but I played the “it’s my body” card (a favorite card of hers, I might add) and she let it go. Or at least appeared to, anyway, and if that’s the case, I’m more grateful than I can say. I still need allies, even when I’m doing the wrong things.

As summer spreads out around me, softening the air and warming the surfaces, it’s hard not to think about swimming and the ocean. While I don’t spend all day in it during beach vacations any more, I still venture out to say hello and rock in its cradle a few times during my visit. As I slip under each wave and feel it pull through and past me, I feel like I’m being cleansed and reborn, wet and salty, fresh and new.

I use the metaphor to explain my life-coping philosophy.  As an adult, I’ve learned that when I see a big wave approaching, it’s better to swim towards it and dive into it headfirst rather than try to run for the shore. Usually, I can come out on the other side with the worst of it crashing behind me. Unlike when I was in my twenties, few waves are like that now; most are gentle, sliding underneath me like they did when I was on my little raft. Only every once in a great while does one thunder in so powerfully that I have to curl up into a ball and wait for it to finish.

But as of last October, the metaphor has officially broken down. I have been waiting, curled up, for this current wave to expend itself, to finish taking out its anger on the shore break and subside. But I’ve come to realize it’s not a wave at all. The surf itself has grown angry and dangerous, there are no lifeguards to be seen, and I am not sure I ought to be out in it. Waves don’t drift innocuously beneath me any more.  I keep attempting to ride one in to the safety of the shore, but I am never delivered there.

Waves just keep coming, hard on the heels of each other, forcing me to stay hyper-focused on their approach, at the expense of just about everything – and everyone – else. I’ve been pulled so far away from other people that I can barely see them as they tag one of a series of distant, bobbing buoys before moving on.  Way out here, I have to fight just to stay out of the riptides, unable to get myself close enough to one of those buoys to even touch it.

It finally occurred to me that I’m not looking at the right set of buoys. Those are the ones for [relatively] healthy, able-bodied people. It’s no wonder I can’t reach them; I’m not even in the same ocean as they are any more. I have been dragged into rockier surf, and there’s a different set of markers here. And I have tagged plenty of them. Giving up full-time student status.  Taking pain medications regularly. Hiring a cleaning service. Relinquishing my stick shift. And, this past week, acquiring a handicap parking tag.

But it seems I am still a strong swimmer, in a manner of speaking. This ocean I find myself in, wilder than one I would have ventured into of my own volition, still hasn’t sent me anything I can’t handle. There have been some close calls, and some long tumbles under water, but each time I’ve emerged relatively unscathed on the other side. The smile may be a grimace, and there’s a lot of sand in my suit, but I’m still ok.

My raft is this blog, giving me a chance to rest above the water between the relentless waves, and I’m getting pretty good at managing myself this unfamiliar surf. I may not be diving in headfirst, but I’m no longer running for shore. I’m out here for the duration, however long that may be.  This may not be my permanent sea, but that’s no longer an excuse not to learn the tides.

Posted in Aspect I | Tagged , | 1 Comment

house-hunting

Posted on June 8, 2014 by C. M. Condo

I was speaking to a friend on the phone a couple of days ago. She also has physical issues that require pain medication, and every two or three weeks or so, she’ll swallow a handful of pills, drink a lot of alcohol, pass out and scare the crap out of her family, and then spend the next few days full of remorse and self-flagellation. Months ago, I’d suggested she might benefit from some sort of rehab program, but she responded that she’d done that three times and it never took, so I let it be. I do know she goes to meetings, NA or possibly AA, a few times a week, although that hasn’t appeared to “take,” either.

A few days ago, she had another episode, where she’d gone through half a bottle of pills and countless shots of vodka and woken up the next morning feeling like hell; she called me up the following day, as desperate and remorseful as always. “I screwed up again,” she said sheepishly, as she has, about every two or three weeks, for as long as I have known her.

I’d been holding my tongue about what I thought about her issues. I figured I wasn’t her doctor or her shrink and if she wanted to flirt with a trip to the ER every few weeks, it was none of my business. Chemical problems notwithstanding, she has been a good support for me through all that’s happened, and I felt that she needed me in some odd way, and it felt nice to be needed.

But something about the whole situation had been nagging at me lately and I hadn’t been able to put it into words. Until that last phone call, when I found myself saying, “Actually, I don’t think you want to stop abusing those pills. I think you’re afraid of having to be accountable for your mistakes. I think you like being able to blame your screw-ups on your pill addiction. I don’t think you really want to change.”

Silence.

She hung up on me a few seconds later.

I don’t feel bad that I said it. She probably didn’t hear it the way it was intended, but even so, I’d already gotten too rolled up into her pattern of abuse and remorse and I didn’t want my lack of commentary thereof to be interpreted as tacit approval.  So it’s probably a good thing that I pulled the plug.  Maybe it will help her. Doubtful, all things considered, but it’s out of my hands. Besides, I have my own crap to worry about.

But since then, the last words I said to her keep echoing in my head.  I don’t think you really want to change. I realized I could have been – should have been – saying them to myself. I don’t have a pill problem, but when it comes to adjusting my life to accommodate for my injury, I don’t really want to change. I don’t want to become a new person, a physically weak person, a disabled person.

I went to a rheumatologist this past week to see if there was a medical or biochemical explanation for my injury history and lifelong exercise intolerance. He thinks that my profile fits the description of a form of a metabolic myopathy (muscle injury due to an inability for my body to clear the lactic acid produced when muscles are stressed). I got a baseline blood panel, and I’m to go back in two weeks and do another panel, this one 48 hours after a muscle stress exercise.

I’m not sure how I feel about the proposed diagnosis. I sought him out because I wanted an explanation for why I wasn’t capable of physically keeping up with my peers, but I didn’t actually expect to get one. I had been secretly hoping he would suggest a particular trainer or exercise specialist who could tell me what I was doing wrong, and tell me how I could change it to I could improve my performance.

However, performance improvements are not on the table. Whether or not there’s a metabolic reason for my situation, the doctor was careful to point out, more than once, that there is no remedy for it. No matter what I do, if I work my muscles past a certain point, I will have to endure several days of pain. If I exercise or otherwise stress myself physically for too long, I will be forced to deal with weeks of fatigue. These reactions are likely to worsen as I age. As in, this is my new reality.  I’m stuck this way.  Forever.

But even so, I don’t really want to change.

I don’t know why not. It’s not like it’s been fun, having this little finger-wagging PE teacher in my head, admonishing me for not pushing myself hard enough all these years. I remember from back in school a particular torture called the yearly physical fitness test. Given in PE class early in the year to grades four through ten, each student had to perform a certain number of crunches and pull-ups, demonstrate a certain level of flexibility, and run a mile in a certain length of time.

I could manage the crunches and pull-ups with relative ease, and I had no trouble with flexibility. But I could never run the whole mile; doing it in less than the prescribed time was not even an option. I was always – always – the last one to finish. The class would have to wait for me as I dragged myself through the last lap or two at a slow walk, barely able to put one foot in front of the other.

Not a single PE teacher ever pulled my mom aside to discuss the mismatch between my physical health and my inability to run a mile. I was the only kid in class without an obvious mitigating factor, such as asthma or scoliosis, who was unable to complete it, but it was never suggested that there might be something wrong with me.  The fault was always mine for not trying hard enough, an attitude that I self-perpetuated long after PE classes had faded from my rearview mirror.

I was lazy, someone who should have been able to do it but just didn’t feel like pushing herself. One teacher accused me of not taking it seriously. This seems especially cruel in retrospect, considering that I took it more seriously than just about every other student. The consensus view among my classmates was that the whole thing was a joke, a waste of time that could have been better spent playing dodge ball.

But I would spend days getting psyched up.  I’d practice running in the yard or cul-de-sac. In middle school, I even took up jogging for a short time, getting up before school to practice going up and down my street.  Each year I was hopeful that maybe, finally, this year, bigger and stronger than last year, I’d be able to run that damn mile. It wasn’t until the tenth grade, the last year it was required, that I finally threw in the towel and walked the whole thing.  There didn’t seem to be any point in bothering trying to do otherwise; might as well [ostensibly] do it on purpose.

Now I may have an actual diagnosis upon which to hang this lifetime of physical insufficiency.  I’m not sorry I wasn’t correctly diagnosed back then, though.  I would have hated to have been barred from doing things I enjoyed like swim team and theatre camp.  And undoubtedly, I would have been accused by my peers of “faking” it just to get out of certain gym requirements. You don’t look handicapped to me.  Where’s your wheelchair?  Hey, teacher, I’m tired, too, can I sit on the bench with her?  By high school, I would have been begging my parents not to tell anyone, asserting that I’d rather just fend for myself.

What I am angry about is that there is no longer any alternate outcome. I am going to be disabled, either metabolically or physically, for the rest of my life. I have to decide whether I’m going to change and accept, or fight for my old self-concept and be miserable. Up until now, it’s pretty much been the latter. I don’t really want to change. I would rather maintain the fiction that the clipping of my wings is temporary, a minor setback, a little hiccup in an otherwise full and active life. I have not been able to bring myself to face the truth full-on, which is that whatever flying I get back to will have to be moderated, and that certain heights are never to be mine.

I’m resentful about that verdict, and even more so now that all hope of an appeal has been quashed. The relief I feel at having laziness expunged from the record is not enough to outweigh my chagrin at being sentenced to life with impairment. I have absolutely no idea what my self-concept should be in this new reality. I’ve just been a tourist here all these months, staying in hotels, living out of a suitcase, unwilling to go house-hunting or check out employment opportunities.

I know that as long as I persist in duct-taping my old self-concept to the chair, there’s nowhere for a new one to sit. But as much as the uncertainty about what the new one will be frightens me, that pales in comparison to my fear about the transitional period where there won’t be anything in that chair at all. How do I keep the wrong thing from sitting there? How will I know what the right thing is when it comes along? And how will I know what to think, say, or do, in the meantime?

The questions come thick and fast, piling on top of one another, pinning me down, keeping me from moving forward. Because I’m letting them. Because I don’t really want to change.

But what I want even less is to stay the same. Unlike my friend, I’m not comfortable where I am. If my only options are bad and worse, then I guess bad will have to do. It’s time to start checking out the local real estate, because it looks like I will be living here.

Addendum:  My friend called me back this afternoon to tell me she was entering an intense outpatient program for substance abuse, and promised to keep in touch.  

So it looks like we’re both going to be changing, after all.

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