getting to work

Posted on June 10, 2015 by C. M. Condo

So now I have officially graduated, and have been back to work in the lab for a little over a week. The days are long, but my shoulder, while not entirely pleased, has thus far refrained from laying me out as it has in the past. Surprisingly, it is the “good” shoulder that has been giving me the most trouble. And while I realize that means the surgery to fix the “good” one the same way the “bad” one was fixed in January should probably occur sooner rather than later, I’m not ready to sign on for a fresh dose of nightmarish post-surgical pain and an additional six months of immobility just yet. I’m hoping it can wait a year. Or three.

I still can’t do anything that involves carrying something like a purse, backpack, or tote bag on either shoulder. I still can’t lift anything very heavy at all, nor anything moderately heavy for more than a few seconds. But my range of motion is back, and light-duty activities are fine as long as I don’t overdo. Most important, I’ve started to swim again.

Not a lot – nowhere near what I used to consider a regular workout – but I don’t care. Even a few minutes is heavenly. I had been afraid my body would forget how to do it. Not how to swim, of course; I’ve been doing that for far too much of my life to lose it in less than two years. No, I was afraid I’d forget how to distance swim, the smooth, economical crawl I used to use when I was swimming a mile or more, before I embarked upon the now infamous endeavor of intense training that catalyzed my injury.

About six or seven years ago, back when I first started to swim again as an adult, I could barely make it a lap without having to take a break, gulp air, and wait for my heart to stop slamming at my throat so I could do the next one. I thought that’s where I’d be when I came back to it this time, but that didn’t happen. On the contrary, I pushed off the wall and my arms and legs went right into it, as though I’d never stopped. At first, I was afraid to swim more than a dozen yards, but the last time, I completed a hundred meters before my muscles informed me they were done. I stayed in the water for a while afterwards, floating on my back and staring at the sky, thinking, knowing.

I’m back.

I never thought I’d be back. I had long since ceased to hope I would ever get clear of the pain and disablement that has so compressed my life the last two years. I had grown accustomed to the smallness of my existence. The fear that I would not be able to swim, to work, to live normally, had become an integral part of my thinking and being, so familiar that it no longer registered as unusual or different.

It is only now, as it has begun to dwindle, that I realize how much space that fear took up inside my body and head. For a long while, I had thought, or hoped, rather, that it would vanish all at once, a ridiculous fantasy that belongs dropped by the side of the road where I left it so many months ago. I didn’t expect this tiny but inexorable leak that has only recently lowered the water level enough for me to be able to measure it.

I have learned so much about myself. What I can’t do. What I can do, and endure, which is both less and more, respectively, than I had imagined. My imagination, which I had put such stock in as a poet and songwriter, turns out to have been under-qualified for the task of predicting how much I could take and how strange it would get.

I have learned that my strength of will runs far deeper than I thought. I have learned how and where to apply it, too, as well as where not to apply it, although I have not been completely able to extract myself from a number of futile efforts just yet, particularly when it comes to something important to me.

I have learned where my boundaries are.

Before this happened, I couldn’t see any boundaries. They were there, of course, but I acted as though they weren’t. The edges of where I thought I could go seemed far enough away that I never concerned myself about running up against them. I didn’t expect them to suddenly spring out of the ground and knock me flat, high walls of stone that I could not – will not ever be able to – scale no matter how I tried.

But I’ve learned there’s enough room inside of them to live, and moreover, to live well. More room than I thought, when I was face to face with them, my back turned to still-broad landscape they encircled. I used to think seeing and acknowledging boundaries meant failure. I was stingy and reluctant in accepting the few I had encountered before this happened.

I am surprised at how content and comfortable I have become inside them. Strangely, I feel more free than I did without them. It is as though I had been too exposed before, intimidated by the virtually limitless stretch of earth that extended around me in all directions. Now that I’ve found the fences – now that I’ve learned to accept that there are fences – and I feel safer and more serene. I know exactly where I can and cannot go. I’m no longer hampered by the anxiety of worrying about how far I “should” be able to go, the things I “should” be able to do.

I am physically fragile and always will be. I am a high-functioning autistic and always will be. I can’t make those things any different than they are for the trying; if I could, I certainly would have done so already, considering how many years and immeasurable amounts of energy I’ve already invested in it.

Now, I can see how to care for myself as a human, this human, this great ape. I had been worried that I would never be able to have a real career. My HFA allows me to work normally, but leaves me ill-equipped to manage more than an hour or two a day of the social interaction nearly always inherent therein, which [finally] explains why I always burned out when trying to work full-time before. But working in research, I can be in the lab nine or even ten hours a day and still count my total time spent communicating with other people in mere minutes. It is perfect for me, and better than that, I enjoy it and am happy doing it.

I never thought I would stop hating this maladroit, easily damaged casing that carts me around. But it turns out to have an advantage; it requires less activity, and less strenuous activity at that, to keep it in optimal form. I cannot take what’s considered the right amount of exercise (for the average person) or I will stress it to the point of injury. A couple of workouts and a few extra trips up and down the stairs is more than enough, and rather than being resentful about it, I can be grateful for it, because I can work more, and rest more, the former being necessary for the next few years, and the latter likely forever.

As much as I used to value how self-sufficient I was in all respects (or thought I was, anyway), it’s not so bad to have learned how to get through life leaning on the people around me when I have to. It forces me to stay connected to my fellow humans, to be friendly to everyone I come into contact with, because I never know when I’m going to need help with a door, or something on a shelf, or, as happened just yesterday in the lab, moving the tank of water I had just refilled from the cart back to the sink.

It’s probably even a good thing that I can no longer sit in a car for hours on end, so intent on getting where I was going that I never paid attention to the scenery flying by. Having to take breaks every hour or so of a long drive means fresh air and a chance to enjoy wherever I happen to be, to acknowledge the fact that it’s really not the end of the world if it takes a little longer than it should to get where I’m going, and that the route I chose might not be the absolute best way to get there. Because who is really paying attention to that besides me, anyway?

I think it is that last bit that has been the most important lesson of all. My god, I used to be in such a damn rush, and it all had to be so perfect. My late entry into this science career only made it worse; I had to graduate on time, had to take the hardest classes and get the highest grades, had to accept every commitment offered, had to invest a full complement of time and energy into each one… there’s no way I could have kept that up. If this hadn’t happened to me, something else would have, and who’s to say it wouldn’t have been worse, in timing, or severity?

I didn’t think I’d ever get to a place where I felt lucky, or grateful. I used to rail so hard against people who’d been through similar ordeals and claimed they felt that way, because I just couldn’t understand it. I was so angry, so full of despair, and I could not conceive any other way of thinking about it. I wanted to know how they got to that peaceful place. The self-important trumpeting about simply being there seemed worse than useless; it felt smug and insincere.

But I can be sincere when I say that there are times, brief and infrequent thought they may be, when I feel blessed, and full of gratitude, for the life I am able to have despite everything that’s happened.  More and more often, I don’t feel diminished by this but enriched, by what I’ve learned and who I’ve become.

Of course, I still have anger, and sorrow. I still have a lot of resentment to work through. It’s not fair, what happened to me. These kinds of things never are. I don’t have an explanation for why it happened, or what the higher purpose was, because there isn’t one, not for me, and not for any of us. But there is a way to get to some peace about it, and this blog has been my documentation of that journey, the “how” I searched for so vainly for so long, preserved for posterity for those still searching, still in the weeds, still suffering, still eclipsed with despair.

My journey isn’t over yet. There is still another surgery; there will still be more pain, before there is less. There may very well be pain forever. But it doesn’t matter; I know I can take it. I’ve proven I can, over these last nearly two years.

And if I can, so can you.

Even though stories never really have ends, I feel that the important part of my experience is what has already been written here on this blog.

I have finished posting, at least for the moment (probably), but I will make sure this site stays up, for those who come after, who are undertaking their own painful journeys, in hopes that it makes them feel a little less hopeless and alone.

Thank you, to everyone who has been commenting, following, and lurking. Your eyes have been my solace through these dark days and nights, the many obstacles, the few triumphs. I could not have done this without you.

Sincerely,

This Great Ape

Posted in Aspect III | Tagged , , , | Leave a comment

not my fault

Posted on May 18, 2015 by C. M. Condo

As I read more and more about my autism (for new folks, I was recently diagnosed with Asperger’s, an Autism Spectrum Disorder or ASD), I am, for the first time in my life, seeing my life experiences clearly. All of my difficulties, particularly in social and emotional settings, are explained. But my emotional reaction to this, which the literature affirms is not subject to the same executive control as those with non-ASD brains, bubbles up and overwhelms me, and I keep having to stop, let those emotions run through and out, and then dive back in and keep going.

So many things. I won’t provide a list, but the overview is that where non-ASD, also referred to as neurotypical (a word I am reluctant to use, as it seems somewhat derogatory to me although I can’t figure out why), people have dials for focusing and managing attention and emotions, people with ASD only have an on/off switch. As in, you get it all, or you get nothing.

Our ability to understand which feedback coming in we should pay attention to, which we should habituate to, and which we should be sensitized to, is severely impaired, as is our ability to flip back and forth among these. Executive control over emotions and attention is all but nonexistent, although many of us have learned to mimic the signs of it, by hiding our emotional responses from observers, or adopting postures that give the appearance of paying attention to someone even when distractions have made it impossible to do so.

At least, that’s what I do. I can’t actually pay attention to you when there’s a television on in the background, but I will face you, maintain the right amount of eye contact, and occasionally nod and insert the proper verbal encouragement to keep the conversation going when I detect that the pitch of your voice has gone up and is followed by a gap of about a half a second or so. (In a restaurant, if there is a television, I will get to the table first so I can sit with my back to it.) Most people do not have to learn this behavior as adults. They were so young when they learned it that they don’t remember it, and certainly, never broke it down in the way I just did, into a series of steps I must consciously execute, although I have grown so skilled at it that it (hopefully) appears natural.

People used to make fun of me, or worse, call me rude, because they would be talking to me while the TV was on and I would get pulled away by the television and miss what they were saying. But now I know it wasn’t my fault.

People still find it odd that I take things literally when I’m not supposed to, and disparage me for it. I’ve tried to get better about it, because I thought it was a flaw I needed to remedy. But it wasn’t my fault.

People have pointed out that my monotone way of speaking about emotionally fraught situations is callous and off-putting. But since my only choices are no emotion, or far, far, too much emotion, that’s not my fault, either.

People, even my own therapist, have accused me of becoming overwrought at situations that do not merit this response, and that it is my fault for letting myself get spun up. I have spent years trying to fix that. But it’s not my fault that I’ve had so little success.

People have made fun of me when it comes to losing things, dropping things, not being catch things thrown at me, bumping into things. I have developed elaborate routines to try to fix this, particularly the first, in an effort to be more “mindful.” But it’s not my fault that I still have so much trouble.

People accuse me of ignoring them when they’re trying to get my attention, after having called my name or motioned to me, more than once, and failed to get a response. I thought this was because I was too self-centered, and have tried to maintain a better awareness of my surroundings. But it’s not my fault that it still happens.

Learning to drive a car remains the most difficult skill I ever had to master. Being aware of every single thing going on around me while driving at the same time is a task to which my mind is uniquely ill-suited. It took me three times as long to do it as it did most of my friends, who were on the road mere days after learning the basics in the parking lot. Granted, they learned on automatics, whereas I had to assimilate a clutch and a stick-shift. But even so, my progress was painfully slow.

I dreaded when my mom would come to pick me up from high school and I, already exhausted from a day of unproductive interactions with my peers who understood me not at all, would frequently dissolve into tears or throw a temper tantrum when I would see my mom sitting in the passenger seat. (Needless to say, this reaction rarely yielded the desired result. I usually wound up having to drive home anyway. Momma Ape never has been a pushover, and thank goodness, because who knows how much longer it would have taken otherwise?)

Now I know that all of the things that created that response, from the exhaustion, to the reluctance to have to perform what was a much more energy-draining exercise for me than it was for most, to the all-stops-pulled emotional reaction to these feelings, was not my fault. I wasn’t being hysterical or immature. I simply couldn’t help it.

So many things I berated myself for, time and again. So many times I vowed to become less self-centered, less emotional, more mindful, to pay better attention… if I’d been a neurotypical person, how much of my life would have been so completely different? How many more friends would I have?  How many more fulfilling, life-long relationships?  How much less abuse, intentional or otherwise, at the hands of my associates and peers would have occurred?  As sensitive as I am to such things, as deep as my sense of personal responsibility runs, how much of a better (I know, I shouldn’t say better) person, employee, friend, daughter, sister, girlfriend, would I have been?

My whole life, I’ve run up against situation after situation where I didn’t behave the right way and I always, always thought it was my fault, that it was something wrong in me that I needed to fix. I couldn’t understand why was it that these types of things kept happening to me, and why I had to expend so much effort to do what seemed to come so naturally to other people.

But it wasn’t my fault. I won’t say all of it, but most of it was truly beyond my control. And it doesn’t mean I don’t have to learn how to be better. But years and years, practically an entire lifetime of self-flagellation over all of this, over something that I couldn’t help, has left me with a self-esteem that is tenaciously, cripplingly low. And I’ve been this way for so long that I despair of trying to lift myself up.

I’m angry at everyone who ever made me feel bad about myself, even my close friends, who stayed friends with me despite a veritable pattern of self-centered obtuseness; even my family, who loves me dearly in spite of my strangeness; even people who tried in different (and largely unsuccessful) ways to help me, I’m angry at all of them. Always, the implication was that I wasn’t applying myself, wasn’t trying hard enough, when I was trying, so, so very hard, and wasn’t successful, and couldn’t understand why, and was left with no answer that made sense, other than that I was a fundamentally flawed human being, unworthy of friendship, unworthy of love.

And when you think of yourself that way over and over again, year after year, decade after decade, how do you come back from that? I only discovered that it wasn’t my fault just in the past few weeks. A few weeks against thirty-some years of negative self-talk buttressed by negative feedback from those around me. No wonder I’m so upset. No wonder I’m so angry. I’m grieving.

I’m grieving for that poor little kid inside me, so misunderstood, even by me, who never had a chance, who sustained so much blame, so much bullying, who tried so hard to do the right thing and couldn’t understand why she kept failing. I’m grieving for me, now, adult me, for the ten-plus years spent painstakingly recording and memorizing social interactions, learning what empathy what was supposed to look like so I could properly express it, and continuing to run into situations where I came up short and was blamed for it, and berating myself for still being so selfish.

It’s ok. I keep telling her, keep telling myself, over and over, trying to soothe myself, another task for which my brain is far less capable than most people’s. You’re not bad. It wasn’t your fault. You don’t have to feel this way about yourself any more. But I feel as though I’ve been imprisoned all this time for a crime I didn’t commit, and suddenly the door has just sprung open. And I’m afraid to walk through it, to walk back out into the world; I’m afraid people will not believe me when I tell them I’m innocent, no matter how much literature and research about high-functioning autism I throw at them, no matter how many times I try to explain it (and I’m a really good explainer – too good, providing far more detail than most people care to imbibe). And I can’t do anything about that, and I have to get over my emotional response to it.

But it’s really, really hard. It’s huge and overwhelming, and I don’t know how to even come at it. And knowing that that is not my fault, either, doesn’t help at all.

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

it’s too much

Posted on May 11, 2015 by C. M. Condo

I don’t know what to write here. Words on a screen are too thin and ephemeral to fitly describe the weight and depth of what I feel inside. My loneliness, barely managed under the best of circumstances, has been flushed to the surface once again and refuses to budge. The recent diagnosis of ASD, which should have been a relief, and is, in some ways, has also exacerbated my fear that I am too broken to ever be whole.

It’s also finally, completely torn to shreds any hope I held out of ever being normal. I’m simply not. My body is not normal. My mind is not normal. I am always going to need to make accommodations for myself, physically, mentally, emotionally. I am never going to be able to engage the cruise control when it comes to my thoughts, speech, and behavior. I’m always going to have to watch myself; I will never be able to completely relax unless I am alone.

And so I’m more frightened than ever that finding a life partner for someone as strange and messed up as I am is impossible. I know that thought is unreasonable, or at the very least, unhelpful, but it is supple and resilient, and springs back each time I try to pin it down or bury it.

I know the best way to address a fear is to acknowledge it, accept that the worst case scenario will occur, and get comfortable with it. But when it comes to this, the worst case scenario is so upsetting that each time I contemplate it, it overwhelms me. Each time I try to get comfortable with it, a wound opens inside me and that pain that is too deep and wide to describe pours out into my consciousness.

The wound is so tender and remains so unhealed that it bleeds whenever anything brushes up against it, even things that I don’t expect to touch it. Even though I don’t want to feel this way. I don’t want to feel as though the universe has given me too much to handle, that my life has been any more unfair than anyone else’s.

But how can I not? I mean, who wouldn’t? As hard as this all has been, and as difficult as it is for me to connect, I still find myself thinking that if only I had someone to share the burden with, to lean on, to help hold me together when I fall apart, it wouldn’t be so bad. But with this latest discovery, that possibility now seems even more unlikely than it ever has.

I mean, how could I possibly explain this to someone? Who would sign on for this? Not just the physical disability, but an emotional one, as well? It’s too much.

Just like this, what’s happened to me. It’s too much. It’s too much for any one person to handle. I don’t know how to do this. I pray, I meditate, I spend time with my friends, I try so hard to let go of needing to understand why this is so hard. I try so hard to let go of needing to know when it will end, or if it will end. I try so hard to cling to any sort of hope about it at all, that it will work out, that there must be something good waiting for me somewhere, at some point in the future.  But it’s too much; the wave is too big, and it swallows me up.

It’s not that good things aren’t happening. I graduate in two weeks. I start lab work, albeit in a limited capacity, the week after that. Despite everything, I’m still OK, at least on the outside. But on the inside I’m just completely wrecked. I cry every day. And not just get choked up, with a few tears slipping out, but crumpled in a ball on the floor, sobbing uncontrollably, because the pain inside me hurts so much I can’t do anything else.

I know I have every reason to be depressed. I suppose anyone would be. But that doesn’t help. I just want to not be this, to not be me, not be this great ape. Not any of it, not disabled, not autistic, not broken. I want to escape, but there’s nowhere I can go and not be all of those things.

After my last exam this week, I’m supposed to leave to go to the beach by myself for five days. Normally, I’d be looking forward to it, but not this time. I don’t even really want to go, because there doesn’t seem to be much point. It’s not like I can park this pain in the garage of my apartment building, leave it here and travel without it. And if it’s going to hurt this much no matter where I go, what’s the point in spending the money and energy arranging and taking the trip in the first place?

I want a vacation, yes, but what I want a vacation from is me. And there’s nowhere on this planet I can go for that.

Posted in Aspect III | Tagged , , , , , | Leave a comment

you know what else has a hole in the middle of it?

Posted on May 7, 2015 by C. M. Condo

Dear TG Ape:

{Health Insurance Company [Money-Grubbing Wankers, Inc.]}’s pharmacy benefit manager continually review* medicines, products, and prices, to make sure the drugs that work well and are cost-effective become part of your prescription drug benefit [figure out if there’s anything we can avoid paying for]. As part of this effort, there are changes [we’ve cut some things from the list] that could [will] affect your current drug choices [needs].

As of July 1, 2015, your current drug(s) listed below will require a medical necessity prior to authorization in order to be covered by your prescription drug benefit. You will pay the full cost of the prescription without an approved medical necessity prior authorization…

*improper grammar copied directly from original letter

You know, this may not require any special TGA sauce (not withstanding a bit of paraphrasing) to show it for the steaming pile of poo that it is. But I haven’t had a good opportunity for a rant in a while, and there are some subtler points that I want to highlight, so I’m going to break out the soap box anyway.

This, in my opinion, is the gist of the letter:

Hey, you know those expensive meds you’ve been taking? We don’t think you really need it and we don’t feel like paying for them any more, so we’ll only cover the cheap ones that don’t work as well.

Granted, one of my medications is extremely, outrageously expensive. It’s an extended release formulation of a far cheaper medicine for which there are generics, which has, as you might imagine, driven down the price (and demand for) the on-label version. The extended release version is exponentially more expensive, and exorbitantly so, considering the fact that extended-release technology has been around for as long as it has. But that’s not my fault; blame the pharmaceutical company.

However, rather than pressuring the pharmaceutical company about the price, the insurance company is just dumping the cost off onto patients. Worse, it is insinuating that it is the fault of those patients that this is being done, as though we were soaking the insurance company for more expensive medications than we actually “need,” although a justification for this line of reasoning fails to present itself even to my agile imagination.

You know what I “need”? I “need” to sleep for more than four hours (or less) a night. And without this medication, I don’t, because of pain. If it weren’t for this medication, I would have had to have been hospitalized by now (which, by the way, would cost even more than the inflated price of the medication that keeps that from happening). Which seems like a pretty good definition of medical necessity to me.

But now, I have to get “prior authorization,” which means that the doctor’s office has to patch a phone call to the insurance company to reassure them that the medication my doctor prescribed is medically necessary.

That is so ridiculous I’m going to write it again. Reassure them that the medication my doctor prescribed is medically necessary. Because, you know, doctors don’t actually consider whether drugs are medically necessary before prescribing them unless the insurance company forces them to.

Seriously?

This “prior authorization” business is nothing more than a cost-cutting measure, removing some benefits from the balance sheet by making patients jump through extra hoops to get them, because the insurance company knows there are a number of patients who won’t, or can’t, make the extra effort.

But I am not one of those patients. I am more than happy to trot this letter into my surgeon’s office and let his medical staff, who, believe me, you do not want to be on the wrong side of, call up the insurance company and tell them exactly what they think of this bulls**t.

Point being, of course, that I shouldn’t have to, and that placing this burden on people who are already health-compromised is particularly disgusting. Why not just be up front about it? The drug company charges too much for this and we don’t want to pay it any more.  I wouldn’t like that letter, but at least it wouldn’t insult my intelligence.

But don’t pass your dirty work off on me and pretend like you’re doing me a favor. I paid exorbitant sums of money for health insurance a decade and a half before I actually needed the coverage. Now that I do, you vampires will just have to deal. This is why you exist. Get over it, already.

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

and then this happened

Posted on May 2, 2015 by C. M. Condo

I’m writing about this because both Momma Ape and my therapist have told me I must write about it. I don’t know if it belongs here or not, and posts under this heading may be moved to another blog entirely at some point.  For the time being, they will just be separated by category; posts dealing with this issue will be categorized “ASD;” chronic pain posts will continue to classified under “Aspects.”

Due to some suspicions I have had for a while, coupled with a recent traumatic event in my personal life, I did some research, and after working with my therapist, have been officially diagnosed as having Asperger syndrome, or as it’s now called, Autism Spectrum Disorder, “ASD,” or “AS.”

For interested parties, more information can be found here.

It explains many, many things. It explains my lifelong difficulty cultivating and maintaining relationships. It explains the bullying and social ostracism that plagued me well into my twenties. It explains my lack of hand/eye coordination, my inability to match my peers’ physical stamina, and my persistent dyspraxia. It explains my insomnia. It explains my deep-seated need for order and my anxiety when tasks aren’t performed a certain way. It explains my difficulty in controlling my temper; most recently with regards to my chronic pain experience and my high level of intolerance towards people offering obtuse but well-meaning suggestions.

I overstimulate easily. I am extremely sensitive to noise, and unable to block out extraneous sounds and focus on a person’s voice in a loud room, and sometimes even in a not-so-loud room. I cannot watch TV or listen to music and carry on a conversation, or do anything else, at the same time.  And once overstimulated, my system goes into fight-or-flight mode in an effort to protect itself, further exacerbating my inability to see outside myself and sometimes resulting in fear-motivated outbursts of anger.

Autistic tendencies reach into nearly every aspect of my life. In some parts of it, such as my chosen career path in biological research, they are an advantage. In others, such as interpersonal relationships, they are a severe handicap.  The most difficult part of it, when it comes to managing my day-to-day, is that I have an empathy disorder. The parts of one’s brain that enable one to place oneself in another person’s situation and identify with it do not work in my mind; the requisite components of my brain do not engage; the necessary neuronal interactions do not occur.

I also have a great deal of difficulty interpreting subtle body language and facial expressions. I have had to learn social cues through trial and error because I have no sense for them, and even though I have collected a vast library of correct responses to many different situations, I don’t always choose the right one. I even have trouble discerning when someone has finished speaking and it’s my turn to speak in a conversation if it’s with someone I don’t know well; that is something I only learn after having spoken to them enough times to have memorized their speech patterns.

I must expend a great deal of mental effort to understand what is expected of me in any given social context, and the more people involved, the more effort it takes, and because I cannot generalize, I have to consider each individual separately when deciding what actions and responses are appropriate. As a result, I tire quickly in these situations and large groups overwhelm me.

I have to employ conscious mental energy to relate to what another person is saying and imagine how I would feel if I were saying it, and the reverse is also true: with what I am saying and how someone else would feel hearing it. Sometimes, it requires so much effort that I must close my eyes or look down or away to do it, because otherwise I am distracted by what I see and am unable to maintain the high level of concentration necessary.  At times, I simply don’t have enough energy to sustain it; if I’m tired, distracted, in pain, or filled with anxiety or self-doubt – basically, if I am mentally compromised for any reason – I am unable to do it.

I’ve never written this down or said this out loud before. I always just thought I was a bad person, a weak person, with poor impulse control. I even, in some darker moments, suspected I might have a sociopathic personality disorder, although that frightened me too much to seriously consider it. I didn’t realize the way my brain worked was different.  I thought other people were simply better at social and emotional interactions than I was, and if I only tried harder, I’d be better, too.

When I was eight years old, I became convinced that the reason I was having so much trouble interacting with my peers was because everyone could read minds except me. I remember earnestly asking my mother if this was the case. She, of course, told me in no uncertain terms that it was not. But it may as well have been. Whatever intuitive sense it is that allows people to interact with reflexive social and emotional reciprocity, I do not have it.

I have learned how to pretend I do have it, but it requires constant mental effort. And it is exhausting.

And I am scared that because it is so hard for me, that I will never be able to be in a romantic relationship with someone, because I won’t be able to let my guard down for fear of hurting them, which is something that happened quite recently (the traumatic experience referenced above), and I’m still not over it.

And I’m angry that I am this way because I’ve had so many other personal challenges over the last year and a half and I really don’t need another one. I don’t want to have to learn to do this. Just over the last few days I’ve been putting so much effort into empathizing with what friends are saying to me that I’m both mentally and physically worn down. Not to mention that it makes me extremely uncomfortable. It’s been frightening, in fact, because I have to concentrate so hard that I lose all sense of what’s going on around me, and I feel terribly vulnerable and exposed.

And I keep finding that I’m holding my breath, that I’m so focused on sustaining the effort that my stomach clenches and I forget to breathe.

I hope it gets easier, but I don’t know if it will.  I don’t know if it’s possible to develop these skills as an adult, although at least now, I know exactly what is (or rather, what isn’t) going on in my brain, and that it is, in fact, clinically, physiologically, and neurologically different.  And I know I have to write about it, because I don’t have a lot of people to talk to about it.  Of the friends I’ve told, all are sympathetic, but a few are skeptical, and I don’t blame them.  It’s like being color blind, only on a much deeper, more personal scale, and it’s hard to explain color blindness to someone that sees the whole visible spectrum.

I am emotionally color blind. And I’m lonely. I don’t have a personality disorder; I do care about people. I don’t want to hurt them.  I desperately want to relate to people, maybe because I have so much trouble doing exactly that.  I want to have an emotional connection.  I want to break out of this plastic hamster ball I’ve been living in and touch someone, and be touched by someone, something I have only ever been able to do a handful of times.  I didn’t make my first life-long friend until I was twenty-two.  I didn’t make my second until nearly eight years later.

I just had another rare opportunity to bond with a companion and I screwed it up because I hurt the person and didn’t realize how much and how badly until it was too late.  And maybe it wasn’t totally my fault; certainly I didn’t do it on purpose. But I don’t ever, ever want it to happen again.  Not that I won’t ever inadvertently hurt someone again.  But I want to have the awareness of it right when it is happening so I can stop it, or at the very least, soon after so I can apologize right away.

I don’t want to have to go back weeks later and painstakingly pick through the event piece by tiny piece, reconstructing every aspect of it in order to discern exactly what I did that was hurtful, why it was hurtful, and what it is I have to apologize for.  I don’t even want to think of how many other times I must have said or done something inadvertently callous or harmful, and people just let it go and never told me.  I’m glad someone did finally say something, finally got upset enough with me for me to reexamine the situation and discover that there is something very unusual about the way my brain handles social and emotional interactions, and that I should try to figure out what that is and see if I can do something about it.

People have told me I’m taking the whole business, particularly the recent event that triggered this discovery, far too seriously.  But they’re not in my head.  They don’t understand how hard it’s been for me all these years.  They don’t understand how much it hurts me to discover that I’ve hurt someone else when I had no idea I was doing it.  The pain, guilt, and shame is overwhelming, every single time, and this certainly isn’t the first time it’s happened. My soul bears a wound that reopens anew each time someone has been bold enough to inform me, after the fact, that something I’ve said or done was incredibly hurtful. The first time was when I was nine years old; the last only a handful of weeks ago.  And I was, and still am, never believed when I try to explain it wasn’t my intention.  Because I should have known, right?  Because, as I’ve heard time and time again: What kind of person would say those things?  How could you be so unfeeling? How could you not have known?

But I didn’t know.  I didn’t know. It’s not that I’m unfeeling and I’m not a cruel person.  But I’m sure most of those people do think I’m callous and cruel.  And I wish more than anything that I could go and take it all back, particularly the most recent, and I can’t.  All I can do is try to keep it from happening again.  And I’m scared that it will happen again anyway and the person won’t understand that I didn’t mean it that way and that I’m going to be plagued by this and misunderstood, over and over again, for the rest of my life.

And when I think about it like that it’s just too big and I get overwhelmed all over again.  But I hope that, day by day, it all gets a little easier.  And I hope I can meet people who will understand and maybe not mind so much and not get hurt so easily.  And keep trying to be a good person in my own way, whatever way I can.

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The Chariot

Posted on April 29, 2015 by C. M. Condo

If it’s easy, then it’s the right thing.

If it’s hard, then it’s the right thing.

What is the right thing to do? It feels like it should be a simple question; a binary question, no less. Some things are right, some things are wrong. All we have to do is figure out which is which. Some of us seek out advice. Others bristle at suggestions, preferring to hash it out ourselves. I used to do the latter; I now find the former more advantageous.

But lately, I’ve been wondering if there is a such a thing as a right thing for my situation. I have found that the right thing and the thing I am able to do are often not the same thing; worse, it’s become apparent that I am still as likely as not to do the wrong thing if I am distracted by pain, worry, doubt, or fear (or any combination thereof). Worse than that, more and more, what I thought was the right thing turns out to be the wrong thing because there was no right thing.

I’ve been so focused on trying to figure out what I’m supposed to be doing with my life. I thought I had fully come to terms with the idea that my life’s direction was completely out of my control, but I now realize that I had simply traded one type of control for another. Lately, instead of trying to manhandle where my life went, I was trying to hew as closely as possible to the guidelines for it that I was supposedly receiving.

This is all the more interesting since I no longer actually believe that such guidelines exist. Or at least, I thought I didn’t. But it’s difficult to let go of one’s God instinct. We are evolutionarily hard-wired to attribute a consciousness to things we can’t explain. Evolutionary biologists theorize that this is because when life was uncertain, and large animals factored in as a frequent cause of death, it behooved us to assume that the rustling in the bushes was a thing that was out to get us. After all, those that assumed otherwise were eaten by whatever was in the bushes. Now, though, it’s as much of an artifact as the last few spinal vertebra. We no longer need a tail, or a god, for balance.

But we need something. I need something to believe in. I need to believe that I am destined for happiness. I need to believe that I am just as deserving of success as anyone else. And I don’t. I’m trying, but right now, with everything that has happened (and is still happening), I’m having trouble believing those things. I am having trouble imagining a life where I don’t always have some pain, where I don’t always get so tired after so little activity, where my ability to cope with sensory input isn’t always compromised so quickly.

I do feel disabled, not just physically, but socially, and emotionally. I feel as though something inside me was badly broken and cannot be repaired, and that because it’s inside me, no-one can see that it’s broken, and I’m still expected to be able to function like a thing that’s whole. And I wish I could wear a sign that says “Fragile,” like the stickers they put on boxes full of glass. I wish we were all boxes full of glass, so that whenever someone brushed up against me, they’d hear the shattered pieces rattling inside and understand that I have been broken and my edges are sharp; that not only am I a useless pile of shards, but if you get too close to me, you might get cut on them.

Because I am not a whole person any more. I cannot think, feel, or move like a whole person any more. But I still look like one. My mentor advised me, a couple of weeks ago, that I needed to stop being so defensive, stop trying to control what people thought about me. “You need to start letting people be wrong about you,” she said. And it’s been one of the hardest things I’ve ever done. Just trying to exercise it over the past couple of weeks has shown me how bad I am at it.

Because people are going to be wrong about me, a lot. I look healthy, now that I’ve put a little weight on and lost that haunted look I had when my pain level was so high all the time. But I still have pain, and I still cannot do any real load-bearing with either arm, and I still fatigue very easily. So I have what is called an invisible disability, where I am disabled but don’t look it. And I know, whenever I step back so someone behind me can pull open the door for me, whenever I take the elevator up one floor, whenever I park in a handicapped space, people are going to look at me and think the wrong thing (if they think anything, which probably happens far less often than I imagine it does). And I just have to let them.

Is that the right thing to do? I don’t know and I’m getting tired of trying to figure it out. I thought the grad program was the right thing to do, but now it’s looking like it’s not, but I’m still doing it because I want so badly for it to be the right thing, and I know I’d hate myself if I gave up now. But it’s taking away a lot of things I like, like my yearly beach vacation with my family (the program starts two weeks before they leave), and like the music ensemble I’ve managed to stay involved in despite my pain. Like performing onstage in any capacity at all.

This past weekend, the ensemble had our last performance of the semester, and my last performance, likely of any kind, for the foreseeable future. We performed on a stage that had the set of another show built onto it. I haven’t been backstage in a theatre since before this happened. A lump formed in my throat as we stood, lined up in performance order, waiting to be announced so we could file onstage. I looked up at the ceiling riggings and the side curtain panels that had been raised out of our way, and wondered how long it would be before I saw those things again. I suddenly realized how much I missed doing shows, doing real live theatre, and I was struck anew with doubt about whether my life was headed in the right direction.

What if there is no right direction? What if it makes no difference what I do? After all, how could what I do possibly be so important as to merit all of this trouble? Here I’ve been spending all of this time trying to figure out what I’m “supposed” to do and I’m starting to suspect there is no such thing. There is no right thing. There are undoubtedly a number of wrong things (and I seem to have tried a lot of them), and then there is this subset of ambiguous things.

I could do important, lasting work as a researcher; and certainly, the amount of money the university is throwing at me in the form of stipends and fellowships points to their confidence that I will do just that. Or, I could fall back into writing and have a life that would be both more uncertain and more free. I keep trying to find some middle ground and failing. There isn’t a middle ground. I have a foot in both right now, but their paths are about to diverge, like the tarot card The Chariot from the Greek-themed tarot deck I used in college, with a black stallion pulling in one direction and a white one pulling in the other. The message was that something in one’s life was about to start pulling one in opposite directions, and one of those stallions was going to have to be cut loose or they would tear the chariot to pieces.

It’s easy to see when that’s happening. But it’s hard to know which horse to let go. People keep telling me I need to do “what’s right for me.” But there’s what I want, and what I can live with, and they are not the same. And I won’t know which one to do until they are the same. And what if they never are?

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excepting expectation

Posted on April 16, 2015 by C. M. Condo

Last week’s pain crisis is now behind me. I’m still quite run down, and unable to do much which either arm, but pain is no longer crowding out concrete thought. Yesterday, the surgeon examined both of my shoulders and affirmed what I had suspected, which is that my recovery is going to be extremely slow, that I could continue to have pain and inflammation for up to year, and that it was possible, although too soon to tell for certain, that I would always have some pain and inflammation at that site.

For good measure, I received a cortisone injection under the “good” shoulder to try to calm it down. (Because heaven forbid I should get out of a doctor’s office without someone sticking a needle in my back.) I won’t know for a few days if it helped or not, but since it feels like someone whacked me with a baseball bat at the site where the sharp pain was coming from before, I can at least be certain he hit the right spot.

I am relieved, both by the pain reduction and the surgeon’s diagnosis. It’s one thing to be an unlabeled enigma on the fringe of clinical medicine, and another for a doctor to reassure me that, yes, what I am feeling is real, and while not normal, at least not unheard of. It’s as though he gave me license to be the slow-healing, fragile mess that I know I am. And it’s good to be able to reconfirm my disabled status, not because I like it, but because it’s so difficult to try to manage without it when I still need it. By this point, I’m sure I shouldn’t require external medical confirmation for what my body is telling me, but it helps immensely to receive it nonetheless.

Since it appears I’m going to be this way for some time, I have also decided I am not giving up on my graduate program just yet. I can’t possibly be the first person in chronic pain who wanted to pursue a graduate degree in research. And even if I am the first, I am certainly not going to be the last. If there is a way to do it, I will find it. And even as I am aware that I may be clearing a path through the wilderness from which I myself will not personally benefit, I have to at least try. I want this too badly not to.

So this is all well and good, right? There is a possibility that I could still undertake the PhD program offered to me, and I am choosing to pursue that possibility. So I should feel better, but for some reason, I don’t. Last night, while trying to meditate, I discovered that, despite everything that has happened, a deep-seated dread still lurks inside me, waiting for a quiet moment to roar to life and fill me with fear.

And it’s not a new fear, either. It’s the same fear that has been trammeling me since October 2013, when pain first came in and changed my life. It’s the fear that I am not going to be taken care of, that the world is not safe for me, and that no matter what I do, it’s not going to be enough, and I’m never going to be able to do what I want to do.

In an effort to soothe myself, I tried instead to think about all of the things I have to be grateful for – and there are many, not the least of which is that overall, I am in a lot less pain than I was before – but it barely made a dent. I’ve lost my connection to the inner peace I’d found a few weeks after January’s bursectomy and resection. I had assumed that I found that peace from inside myself. But if that were the case, I should be able to find my way back to it, and I can’t.

What probably happened was that I continued my usual pattern of harvesting it in my expectations for the future. Back when I seemed to be recovering so well, the future was bright and my mood was calm. Now that my future is so uncertain, the peace that I had tethered to it has come unmoored and slipped away.

I don’t know why this is so damned hard for me. Is it too much to ask not be harried by this deep-seated anxiety that settled in a few weeks ago and simply refuses to go away? I don’t want to have these expectations. I hate that uncertainty makes me so uncomfortable. If there were a way to flip a switch and stop caring about how or when stuff works out and just do what’s in front of me, I would flip it, believe me. But I feel it would require turning my attention away from my future, and I don’t know how to do that. Because what else can I turn my attention to? Almost everything I do points me in that direction. How do I not look at it?

It’s not that I sit in that fear all the time. In the short term, I can focus my mind on any of number of things; school, blog, background research for the lab. I can go about my business as though everything is fine and shield my demons as best I can from the people around me. But even if I refuse to give them mental airtime, they remain inside me, seething and coiling around on themselves, putting me off food and sleep as much as my pain ever did. And I know that’s part a lot of the reason behind my persistent exhaustion. But no matter how much I tell myself – and no matter how much other people tell me – that all of this worrying is pointless, and no matter how many times I acknowledge my fear in hopes of releasing it, it simply won’t go away.

I’m stuck again. I know this isn’t healthy, being twisted up like this. But I don’t know what has to happen for me not to be like this. I wish I weren’t so reliant on some particular thing or another outside of myself happening to me to shake me out of this holding pattern, but it seems that my life-management skills haven’t really improved all that much, despite everything, and that the only way I am going to break free is if I stumble on another piece of good fortune. And considering my history, it could be a long while before that happens again.

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

apprehend

Posted on April 12, 2015 by C. M. Condo

apprehension |ˌapriˈhenSHən|
noun
1 anxiety or fear that something bad or unpleasant will happen: he felt sick with apprehension | she had some apprehensions about the filming.
2 understanding; grasp: the pure apprehension of the work of art.
3 the action of arresting someone: they acted with intent to prevent lawful apprehension.

Yesterday, as I tried to rest, as the pain began to settle somewhat, I came out of mental crisis mode and realized that there were a number of housekeeping tasks that needed attending to, tasks that, both before and after the surgery, I have by and large continued to do for myself. Before the surgery, if I needed help with them, it was because of pain. After, it was because of weakness.

But yesterday, it was neither of those. I was afraid to do them. I was afraid of what they might do to my body. The pain has ratcheted down slightly, but I’m terrified that even relatively easy tasks like making a bed will set my shoulders off again. And so, although it took the better part of yesterday afternoon and all of the evening, I was finally able to swallow my pride and my maladaptive, self-sufficiency-to-the-point-of-injury tendencies and contact a friend to come over and help me out today.

I have once again run up against the realization that the inner workings of my body remain unknown both to me and the medical team that is taking care of me. What is going on in there? How long will I be like this? How long must I walk around with this invisible disability, getting dirty looks in the parking lot of the grocery store even as I imagine it must be patently obvious that I am unable to bear the full weight of my grocery bags, and that I must use my whole body as leverage just to push a damned shopping cart?

People don’t realize how much activity goes into keeping one of those carts going in a straight line, by the way. Their shoulders automatically engage, alternately and together, to apply the right amount of pressure or restraint to each side to keep it from listing one way or another, to turn it around corners, to get it started from rest or bring it up short.

A lot of back and shoulder muscle involvement is required to maneuver it like that. And I don’t dare do it.

I don’t dare do anything with my shoulders. Even as I stand and type this, I worry that the mere action of pushing my arms slightly forward and resting my wrists on the laptop is not good for me. My shoulders have arrested me, and I am sick with apprehension about them. I am filled with self-pity, and worse, with fear.

I remember the last time my pain took over my entire thought process, and it was this time last semester, a month before the end of the term. Enforced daily attendance sitting in lecture hall desks on campus had deteriorated my already unwell state into something approaching, and often arriving at, unbearable. It was at that time that I chose to schedule the surgery. To look back, five months later, three months after the surgery that was supposed to keep this from happening again, and realize that it is, in fact, happening again, almost exactly as it did before, is demoralizing in the extreme.

I feel as though that surgeon lied to me. He said I could get back to normal. He said that after a couple of months I’d be able to do lots of things. He referenced a client whose whole demeanor had changed after the surgery, how he’d not had a bad result from a single procedure of this type, how that the only time he’d had to go back in was to fix the other shoulder. And I remember thinking that he didn’t know me, and I remember having this quiet suspicion, deep inside me, that I was not going to respond the way his other clients had. And I remember letting him talk me out of that suspicion. He was so certain. I wanted to believe. And so I did.

And now, finally, that fantasy has run its course and I am back in the reality I inhabited before, the reality that I was so sure the surgery had rescued me from, that my body is broken, likely beyond repair, and that I will never, ever, get back to the state of health I had before this happened, no matter what surgeries or other drastic measures are taken.

And that means so much more than just not being able to work, or swim, or travel. It means not ever being able to take care of myself and my own apartment ever again. And I am so angry at the surgeon because before we did this, I had made good progress on achieving some sort of peace about that. But now that peace is gone and I don’t want to have to find my way back to it. I just want, desperately, to be well again. I hate being physically disadvantaged with every single fiber of my being. It doesn’t go with my self-perception, doesn’t match my personality, and doesn’t work with my plans, what few of them I allowed myself to make when it appeared that I was recovering normally.

I don’t want my friends have to see me and deal with me like this again. I do not have a good poker face, and those closest to me have learned how my demeanor changes when I am in pain, even if I seem normal to everyone else. I haven’t had to see them yet (except for the one who came over to vacuum), but the more days this goes on, the less likely it becomes that I’ll be able to keep that up.  In fact, if things don’t improve soon, it will be more than just close friends that will have to be brought in; it will include my fellow lab mates, the head researcher, my professors when I start graduate classwork.

And I just do not want to have to apprehend anyone with this, including myself, which is probably why it took until late last night for me to break down and ask for help. I don’t want to have to admit that despite the surgery, I’m still broken in ways that no-one seems to be able to fix.  I don’t want to face the shift in my life that such an admission entails.

I want this latest setback to be just that, a setback, with discrete and knowable boundaries. I want to believe that it isn’t forever, and that I won’t have to expand its circle to engulf any more of my life than it already has. And I am sick with apprehension that the circle is already expanding and it’s already too late; that I will never be able to function normally again and that I’m only staving off the inevitable, trying to box it in and keep it from bleeding into the rest of my life.

But I have to think that I can. Because if I don’t, it is despair that will apprehend me next.

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and for how long

Posted on April 10, 2015 by C. M. Condo

The pain is no better.

I won’t say that it is worse. It may be, but I don’t want to go there.

At the behest of my physical therapist, I contacted the head researcher of my lab to let him know I would be out for the remainder of this week and all of next to recover from a recent setback with my shoulder. He was more receptive than I expected, although granted, it was over email, which means his initial, less-than-receptive response to the information may not have been communicated to me.

Be that as it may, what I didn’t communicate to him was that it has thrown into question not just how much I can work in the lab this summer, but whether or not I will be able to work there at all. It has also cast doubt as to whether or not I will be able to embark upon the PhD program in the Fall. And I need to make a decision about both of those things, and soon, because if I’m not there, the space will have to be filled, and if I can’t start the program in the Fall, then someone else will get to.

Most depressingly, it also defers me reaching my full earning capacity by even longer than it has already been deferred, which, as far as I’m concerned, is quite a bit too long. It has me thinking perhaps I ought to just focus my energy on the writing career and never mind about the PhD until I’m better.

If I get better.

How to keep that demon at bay? I know it takes longer for me to heal than most people. I know it’s still too soon to assume I won’t turn a corner some time in the next few months. But in order to get to that corner, I will likely have to eliminate all unnecessary activity from my schedule for the foreseeable future. Which means I’ll be spending a lot of time alone in this apartment again. And being in here, alone, with just my thoughts for company, is not good for me at all.

It makes me feel like I’m not trying hard enough. It makes me suspect it’s my own fault that I’m in this position, and if only I’d better adhered to what I was told to do that I’d be further along by now. It makes me feel guilty for being in a situation where I can do this without foundering financially, because that certainly wouldn’t be the case for most people. It makes me angry because I feel like I have been doing my best to do the right things, even though I haven’t been completely successful.

It makes me worry that I’ll never be able to find the right balance, and worse, that I’ll never be able to explain my inability to function at a normal capacity to someone in a way that he or she would understand. The head researcher has been generous, but I know he doesn’t get it. He’s an athlete, so he’s been seriously injured in the past, but he’s recovered. He’s not able to do all of the things he was able to do when he was younger, but who is? What he is able to do is be a workaholic, put in long hours, and travel all over the world for his career. And he perceives that to be more a product of his willingness to do so than anything else.

I wish I could explain to him that I am willing to do that, but that physically, I just can’t. I would love to be able to put in sixty hour weeks and maintain, like the other researchers in the lab do, like he still does. I wish more than anything that my physical capabilities matched my ambitions. I have this unflagging certainty that if only my body would allow me to do the things I want to do, I could be successful at any of the career paths that have been offered to me over the last couple of years.

But it won’t. And so I can’t. And I keep trying to find something I can be successful at, and it keeps eluding me. I’ve been able to find writing work, but not nearly enough to support myself long-term. I want so desperately to be a self-supporting adult, and the longer my body thwarts me, and the harder it is to elucidate a path that leads there, the more upset I become. And this exacerbates my pain, which makes my fatigue worse, and only perpetuates my inability to get any sort of momentum in the direction of healing and self-sufficiency.

And it is that, more than the pain, that is tearing me apart.

If it were just pain, if I could be in this much pain and still manage to get things done, that would be OK. And honestly, until my pain level gets pretty high, I can still manage to get things done; I’ve gotten good at that. But there’s a threshold past which I have to stop, because the pain gets so overwhelming that I can no longer concentrate on what I’m doing for long enough to do it properly, be that something as difficult as learning a lab protocol or as simple as driving my car to the store.

But I still feel like I should be able to do those things. It’s just pain, after all. Haven’t I been in enough pain for a long enough time to be able to compartmentalize it and get on with my life?

Now that I go back and read that, I know it’s ridiculous. I know people manage to function through some pain, but not this much pain and not for this long. It’s impossible. It’s a fantasy perpetuated by our aggressively individualistic culture that deludes us into believing that, just like on TV and in the movies, if we are tough enough, pain won’t hurt. And that if pain does hurt, and we let it slow us down, that’s a personal failing. It means we are weak. It implies that the reason we have slowed down is not because we are in pain, but because we are just whiners about it and lack the fortitude to pull ourselves together and deal.

In pursuit of this fantasy, that if I just stop whining about my fatigue and pain and pull myself together I will be able to do what I want, has gotten me into the situation I am in right now. This past week, I started trying to come into the lab every day. I managed exactly two days of that. By Tuesday afternoon, I was a mess. By Thursday, I had to relent and pull back.

How long will I be like this? I don’t know, and what’s worse, no-one else does either. And we live in a world where open-ended is inconvenient at best. “I can’t right now, but I will be able to later, I just don’t know when,” becomes “I can’t.” Because time passes and stuff needs to get done, and if you can’t do it, then someone else has to.

At some point, I fear, the lab and the graduate program will shift from “I can’t right now,” to “I can’t.” And I worry that will hurt even more than the pain, and for a very, very long time.

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

how much, how little

Posted on April 9, 2015 by C. M. Condo

Two days ago, my pain hit the highest spike since before the surgery.  It was no better yesterday, and because of it, for the first time since the surgery, I had to change my plans so I could go home and rest.

Today, for the moment, things seem to be quiet.  But the last two days started quietly, too, and then as soon as I began to try to do things, it all fell apart.  How much pain was I in then? How much am I in now? What difference does it make?  It’s not like anything works to alleviate it once it’s up and running.  And recalcitrant pain has been so much a part of my life for so long that the actual pain levels themselves are pretty well useless.  What I need is a functionality scale. Am I able to do things like run errands, go to class, and shadow researchers in the lab; yes or no? That’s all I care about. “Yes” means the pain is OK. “No” means…

…it means nothing good. It means I can’t use the sling, because it hurts the good shoulder too much. It means I have trouble driving and parking. Most important, it means I can’t carry anything. Try to get through your day without lifting or carrying a single thing that weighs more than a pound and let me know how that works out for you.  These past two days, it’s been excruciating to handle even the smallest, lightest things for more than a handful of minutes.  Everything makes one or both shoulders worse – the purse, the tote, the wheeled backpack, a book, a coffee mug – all of it.

And if I can’t carry anything, then I can’t run errands, can’t manage even the simplest housekeeping tasks, can’t bring the necessary materials to class, and can’t walk around taking notes in the lab.  My back was so stiff Tuesday I could barely bend over a microscope.  Yesterday, I had to ask a classmate to staple a report for me because I couldn’t put enough pressure on the stapler do it myself – not even with both hands.  And the more I get shut down like this, and the longer the episodes last, the harder it is to maintain the faith that my body will ever get to a place where it isn’t such a tender, broken mess.

The last two nights, the pain was so bad that I had to double up on muscle relaxants and add pain medication back in before I could get to sleep. Today, I’m staying home and resting for the better part of the morning instead of going to the lab on campus like I normally would, in hopes I will be in little enough pain to handle an exam this afternoon. The whole day is going to be challenging, but even the emotional alarms that usually go off upon that realization are muted. I’m numb. I’m starting to give up.

Earlier this week, my physical therapist diagnosed not just cramped and tight muscles (this is in the “good” shoulder, by the way), but an entire locked shoulder girdle. “Wear a tank top next time,” she advised, “because we’re going to have to do some ultrasound to loosen that up.”

Of course we are.

“Now that the inflammation is down, can I go back to doing my strength and ROM (range-of-motion) exercises?” I asked (that would be in reference to the “bad” shoulder).

“No. Give it one more week.”

And it’s a good thing she said that, because my condition deteriorated from there.  Yesterday was agony.  I saw her again this morning, and I could still barely handle being touched, on either side.  We did some gentle ultrasound and some ice, but that was all.  And she looked worried.  And she never looks worried.

Between that, the pain, the stress, and the fact that it’s sapping my sleep as well as my energy, I’m too tired to stay standing for long periods while doing my work. But sitting makes both of my shoulders hurt even more, leading to the situation I was in last night and the night before, where the pain was so bad I could not sleep.

I need to factor demoralization into my scale, too. I’m not just physically tired; I’m spiritually and emotionally exhausted. This protracted game of shoulder whack-a-mole is wearing me down. Good one gets better, bad one gets worse, then vice versa, back and forth, again and again.  I suppose it was inevitable that I’d hit the jackpot eventually, and now I have; this week, both of them are quite bad.

The knot under the left shoulder never completely goes away, and won’t, I’ve been told, until the right one gets strong enough to start pulling its weight (literally). But there’s a rock under the right one now, too, and it’s been three months since the surgery, and it’s still all I can do to bend my right arm at the elbow and push a child’s rubber ball a couple of millimeters into a wall for three seconds. This does not fill me with confidence as to my recovery progression, to say the least.

And the fatigue – I can’t stay ahead of it. I’ve learned now that even if I feel good, I can’t allow myself to pick up the pace even a small bit or I’ll derail. And as a result, I managed to maintain pretty well despite over a week of less-than-ideal of sleep. But even suppressing my day-packing tendencies can’t make up for continuous incremental loss, and now I’m a wreck. I need to build up my physical stamina, but every time I add a workout, even a brief one at a very low intensity, it turns into a major setback.  It’s gotten to where I’m reluctant to engage in any extra activity at all.

I don’t know what to do. I’m losing hope that I will ever be well. I had been so sure that the surgery “fixed” me, but it did no such thing. All it did was halt the injury progression of my right shoulder and remove the offending tissues. That made it possible for the shoulder to be fixed. But it’s still in terrible shape, and although I had deluded myself into believing otherwise, getting it back to normal is not a foregone conclusion.  On the contrary; it now appears unlikely. Worse, the rest of my body, and the ordeal it went through for all of those months, doesn’t seem amenable to fixing, either.

I need to talk to someone about this, but who? I have a follow-up with the pain management doctor, but the lion’s share of his clients are in chronic pain forever. What’s the trajectory for those who were immobilized by pain for a lengthy period of time, but then had the cause of that pain removed? How long does it take to get the body back to the state of health it was before? Months? Years? Never?

I want someone to tell me what I should be expected to do. Not what “most” people do. Not what “average” is. I am not most people and I am not average. I break easily and heal slowly. I want to know what my specific progression will be, my body, my shoulder[s]. Because I just can’t seem to get out of first gear. I’m doing so close to nothing that it’s impossible to reduce my activities any lower, because then I’d actually be at nothing.  And it seems every time I try to do something, no matter how small, I make myself worse instead of better.

I don’t know my pain level, but my demoralization level is very high, and my functionality level is very low. And I can’t take muscle relaxants for that.

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