orphaned

Posted on October 17, 2014 by C. M. Condo

So according to my therapist, I am still angry, I am still fighting giving up my autonomy, and I need to redefine the God in which I believe, since the one that I used to believe in doesn’t jibe with my new world view. Which is true. I used to believe in a God that cared about you and watched over you. I don’t believe that any more, and I haven’t had much luck trying to fake it, either.

So what do I believe?

I don’t know any more.  All of the constructs I used to employ to allow faith to co-exist with my otherwise science-heavy world view have fallen apart. There appears to be no larger lesson, no ultimate purpose, and certainly no answer to the question, “Why me?” Which means that life is just as random as I have lately grown to suspect, and suffice it to say, randomness has never been accused of benevolence.

My therapist offered that the inner resources to deal with said unbenevolent randomness is what some people mean when they talk about “higher power.” It seems reasonable enough, and less construct-dependent than my previous god. After all, something has been keeping me from giving up through all of this, and I’m having trouble assimilating that fact with my historically anemic coping strategies.  While it’s true that over the last few years I had developed some good ones: running, which was replaced by swimming when my knee gave out; writing and playing music; and cleaning/organizing my personal space, this injury has taken all of those away from me, and I’ve had to travel pretty far outside my brief to come up with a couple of new ones.

Still, the fact that I haven’t slipped into my old habits of wine, chocolate, and wallowing is pretty surprising in and of itself, and could, on the face of it, point to some other resource that has been bearing me along. But now there’s a little voice in my head saying Is that all? Because I’ve been barely hanging on, over here.  Whatever might be providing some modicum of assistance doesn’t seem to be up to the task of serving as an anchor.

I used to think that people who didn’t believe in God (or at least, didn’t believe in a caring, benevolent one) were missing out on some essential secret to happiness. I thought the eventual state of spiritual peace was inextricably linked to a belief in a God-presence acting palpably in one’s life. I pitied atheists’ cold, godless existences, states of perpetual dusk with no such comfort.

Now I am one of those athiests, and I miss the sunny playground where I and my prodigal God used to live. I’ve since inferred from various mentors that leaving that playground is a necessary step for continued spiritual growth. This is a new idea, to me, and at first, I didn’t get it.  Why wouldn’t I want to stay in the sun, if I could? Everyone I knew there was so happy. Isn’t that the point of living, to be happy? I wanted so much to be happy, like them, and the hazy, soft-focus lens of recall has tricked me into thinking I was happy when I was there, although I have to recognize that this may not be true.

It doesn’t matter either way, though, because just like my dream in the abandoned lot, I apparently don’t belong in that playground, and it’s been hammered home with authority that life doesn’t come with a happiness guarantee. But if not, then what is the point?

Perhaps there isn’t one, and I should just get over it. “Why?” is the wrong question, my therapist insists. So what is the right one? Is it, “How?” as in, “How do I find the resources to keep going?” Not that I’ve gotten much guidance in that department. I feel completely unprepared by prior experience to deal with the gaping abyss my condition has dropped me into. Through much of the first twenty-ish years of my life, I was bombarded with messages from school, parents, teachers, and other adults-who-know-these-things, that I was supposed to “follow my dreams” and “live up to my potential.” I was special, they all said. (Did they say that to everybody? Because that would make it rather cruel, if you ask me.) I was so talented, and smart, and clever, and funny, so clearly, I was destined for great things.

Well, clearly, I wasn’t. And I wonder if maybe this wouldn’t have been such a long drop and a hard fall on my ass if the expectations hadn’t been set so high. Because despite being blessed with all of this supposed talent, it appears that I’m not going to be physically able to actually use much of any of it. Nor pass it on to anyone else, because I am also an evolutionary dead-end; I will not bear any children of my own, both because of bad choices before this happened, as well as, of course, because this happened.

There’s supposed to be a God in this post somewhere. The whole point of this entry was to try to talk myself into one, or at least, into a place of being open to one. But perhaps with heartbreak and resentment occupying all the available space, there’s no room for anything else to take hold and flourish right now. Even though I know, intellectually, that once I do find a God of some sort to inform all of this (or at least, inform my part of it) things will get easier, I’m just not there.

Truth be told, I don’t want to be there. I’m pissed that I’ve lost all control over what happens to me, and that all choice in what I do with my life has been yanked away, such that my only remaining options are “much less” and “nothing.” What the hell kind of choices are those? And in darker moments, I’m ashamed to say that of my limited options, “nothing” can look pretty good.

I’m so tired, all the time. Even this low level of functioning that I’m asking of myself is exhausting. It would be much easier to admit defeat, concede any independence I might have hoped to gain, and be done with it, instead focusing my energy on getting used to the idea of being someone’s (or something’s) ward. Although, does anyone ever really get used to something like that?

Well, I used to be comfortable being God’s ward, I suppose. But I’ve recently come to the realization that I’m an orphan. And as the list of things I thought I could do but now never will grows longer and longer, it’s become more and more obvious that whatever parent-type God I thought I had never really existed at all.

And if I’ve gotten this far without it, what’s the point of trying to build up another one?

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limited

Posted on October 10, 2014 by C. M. Condo

I had forgotten how exhausting it is to function through pain. In particular, I had forgotten how mental exhaustion begets physical exhaustion. After this week, consider me reminded.

It has been six weeks since the semester began. The first two weeks were hideous. My pain spiked compared to what I had been used to.  Through this pain, I had to figure out how to adapt my lecture and studying strategies to my condition, as well as deal with the criminally incompetent disability support services department on campus. Now, though, I’ve now gotten the hang of all of it, including the new set of in-class and studying tools, and I’m functioning almost as well as I did before.

Almost. There is an experimental class that I am taking (that I had not realized was still in the experimental stages), that is virtually impossible to succeed in unless one avails oneself of “optional” tutoring and group work, nearly all of which occurs in the afternoons and evenings. This means that I am frequently unable to take advantage of these “optional” resources, which has had the predictable result; I am in danger of not passing the class.

I don’t mean not getting an “A” in the class, although there was a time, not too long ago, when I did consider a “B” a failure.  That is not this.  I am in danger of not squeaking out a “C” on this one, which would mean I’d have to take it again, which would mean I might not be able to graduate on time. So when I say I might not pass the class, I actually really mean the not-passing kind.  As in the “how the hell does someone with a 3.9 average fail an entry-level class?” kind.

In the past, I would have rallied, pushing around all the other things in my schedule in order to devote as many hours to those resources as I could possibly squeeze out of the remainder of my week. I would have been willing to part with regular meals and sleep to do it. I would have been willing to prowl the internet for copies of last semester’s lecture notes, quizzes, and exams; something that professors are aware happens a lot, and is frowned upon nonetheless.

I am not willing to do any of those things.

I was working exercises on the foam roll in physical therapy yesterday morning, discovering that my lumbar spine was particularly stiff and tender (a new symptom for me, so excited), and for some reason, in that moment, I just stopped and leaned back against the wall. I was so tired of it; all of it. I suddenly realized how much energy I had been expending just to maintain the positive attitude I approach the therapy with, an effort that I hadn’t noticed until it dropped out from under me. Later, as the therapist re-evaluated what I sardonically refer to as my “good” shoulder, it became evident that there has been no improvement. She expressed a desire to have me start coming in twice a week again. I assented, although I did not schedule it.

I’m also supposed to start taking a couple of shifts in the lab I might be working in as a graduate student next year, too.  That doesn’t even seem real right now.  I’d wonder if I didn’t dream it, except that the e-mails from the researcher are still in my Inbox.

I’m not sure how I managed all of my obligations last semester.  How much food and sleep did I part with, how much extra pain did I cause myself, to make that happen?  More than I’m willing to accept now, that’s for sure. I’m better than I was, it’s true, but I still turn into a pumpkin at about 4 PM. I already had to move physical therapy so I could schedule some tutoring for the class I’m failing on the one morning that such tutoring is offered, which means I now have a class or obligation every single morning of the week.

Mornings are prime studying time for me, so I may regret that in the weeks to come. The situation is not helped by the fact that my lab section of that same class is a three-hour ordeal on Monday nights from 6 to 9 PM and it’s killing me; I broke down and e-mailed the professor last night about my situation in hopes of switching, but I’m not sure he can do anything about it. Everything is done online now, and computers are notoriously inflexible about such things.

I fought this so hard for so long, and it was such a relief to lay down my weapons and cede the territory that I just don’t feel up for donning my armor and loading my guns again. For the first time in many weeks, I’m buckling under the load of my obligations, as reduced as they are, and I can’t seem to find the wherewithal to toughen up. This weekend, I have to take a hard look at my schedule and see if there is any additional refining that can be done; but I’m not holding my breath. If only sitting weren’t so damned painful, I wouldn’t be in this situation. But it is, and I am, and I’m once again angry and despondent over it.

If I’m having a good day, I have about eight hours of good functionality before it’s time to pack up my tent. A normal day, five or six. A bad day… two is pushing it. It’s incredibly frustrating, walking around looking so damned healthy while trying to do everything I have to do, which takes twice as long as it’s supposed to take, in half the time I’m supposed to take to do it.

I suppose it’s obvious, when I look at it that way, why I’m having so much trouble. But I’m not satisfied with that. I keep thinking there has got to be some way to make this work. I keep thinking I just need to figure out where to put everything and I’ll be ok. I keep thinking I have some control over what happens to me, or at least, when the what happens to me.

After all, I used to be incredibly productive, even though I didn’t think so at the time. I used to exert this huge control over the elasticity in my schedule. It was unreasonable and ridiculous and ran me into the ground, and I did finally manage to dismantle those behaviors.  But it’s much harder to undo the line of thinking that engendered them. I don’t know what “normal” is, or if there is such a thing. I don’t have a good barometer for the minimum amount of work I need to do in order to succeed in my classes. I was never a minimum-amount-of-work kind of person, before. I was a whatever-it-takes person. I know how not to be a whatever-it-takes person, now, but I don’t know how to be anything else yet.

I’m still haunted by this nagging feeling that I’m being tortured for the sake of torture, and even though I’ve decided to go ahead and start believing in some sort of higher power again, it’s times like these when I’m still not convinced. I keep waiting for the storm to pass and for some sort of regularity to reestablish itself in my life, but as of eleven days from now, the winds and rain will have been going on for an entire year, with no end in sight.

My mentors keep telling me that I still need to “figure out my limits.” There’s a focus on accepting the idea that my days of laboring under the delusion that my life is manageable are officially over. I’m supposed to be surrendering to my lack of autonomy. I don’t like it. When I contemplate it, it causes a discomfort that is almost physical, a sense of no longer being on solid ground, a pontoon that has pushed out of the harbor and is now rocking up and down in the bay.

I’m simultaneously battling wanting to fix it and wanting to give up. Ironically, giving up is probably what’s called for to achieve both of those ends, but I’m not ready to jump into that abyss just yet.  I don’t want to stop now.  I want to go to graduate school.  I want to have the experience of being able to flex my intellectual muscles unfettered, with like-minded people. I don’t understand why my opportunities to do so keep jumping out of my reach.

I know letting go is going to be the theme of my weekly lunch meeting with one of my mentors, and the idea no longer fills me with fear. It makes me angry, instead. Once again, here I am, presented with these amazing opportunities to have this wonderful life, and it seems that all I get is a glimpse of them before they’re pulled away. I don’t understand why my life has to be so relentlessly cruel. I’ve accepted the the letting go, but I hate not knowing what happens next. I’ve been careful to avoid making plans, but I can’t live in the moment every moment of every day. And it seems that no matter how hard I try, whatever it is that I try to do, however small it happens to be, it’s still too much for me to handle.

Do I really have too much on me right now? Two classes, a few weekly meetings, physical therapy, and that’s it. And that’s too much to try to fit into five days? It’s so f***ing absurd. But I’m tired. I don’t fight like I used to. I see the wave coming and I don’t rush in any more. I just slide under the water and let it land wherever it will. On me, in front of me, behind me, it doesn’t matter. It’s not like I’ll be on dry land any time soon.

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

assumptions

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

assumption |əˈsəm(p)SHən| noun
1. a thing that is accepted as true or as certain to happen, without proof: they made certain assumptions about the market | [ with clause ] : we’re working on the assumption that the time of death was after midnight.
2.  [archaic] arrogance or presumption.

Human beings – indeed, all living things – have a lot riding on their assumptions. The basics of living, for instance: our hearts beat, our oxygen-uptake apparatus continues to function while we’re asleep, and gravity pulls us towards the earth. We depend upon and assume these things so completely that we rarely consciously think about them. We only notice our hearts beating when the rhythm changes, such as after strenuous exercise, or that our lungs are supposed to be filling when they’re not. And in fact, this is true for all of our assumptions – we only notice them when something ceases to be what we expect it to be.

Unlike our necessary-for-life assumptions, the features of the world around us that we take for granted are not shared among us.  They are personal to each of us, alone. I see a color as teal, and you see it as blue. Both of us assume that the color we are seeing is seen the same way by the other person.  The fact that it’s not is interesting, but not otherwise a big deal. In the grand scheme of things, it doesn’t matter if, in this particular case, our assumptions about the other person are wrong. And while we do notice when these assumptions are not what we expect, they carry too little freight for us to worry much about them.

We have medium-value assumptions, too. We assume the basic good-naturedness of our fellow humans; that if we smile at someone, he will smile back, or if we leave a coat somewhere, someone will turn it in, or if we pull up to a four-way stop sign, we will yield to one another in the order of who arrived first. (Okay, I realize I’m pushing it on that last one.  Consider it your public service message for the day.) These assumptions are occasionally incorrect, but it takes a lot of lost coats, rude drivers, and unreturned smiles to rearrange them in any significant way. And again, these are really only noticed when they contrast with our expectations.

Large-value assumptions are where things get tricky. Despite the fact that science has proven time and again that our eyes are not the infallible, unbiased interpreters of the world around us that we take them to be, it is far too mentally taxing to assume otherwise. The sheer amount of information we are bombarded with forces us to take certain things for granted. We simply have to trust a number of assumptions, in nearly every situation. And in most situations, this trust is well-placed. But when it comes to how another person might be feeling, our eyes can trick us.

When a close friend is down, we can usually tell. In that case, our eyes help us a lot – they see a change in the normal presentation of our friend, and notice it, and ask our friend about it. But when it comes to people we don’t know, our assumption-making becomes far less reliable. Unable to perceive what is going on underneath what we assume to be someone’s normal demeanor, we project instead. If we are calm, we assume they are, too -until presented with evidence to the contrary. If we are sad, we think we see sadness everywhere. If we are intimidated, we see the power a person has over us – and overlay onto that person as though it were one of their inherent qualities, rather than a projection of our own insecurity.

I encountered an example of this very phenomenon in a new grad student fellowship group I started attending this week. (Sorry, book club, I’m just not ready to go back to you full-time, yet.) One of the grad students there had been the graduate teaching assistant for my first semester of chemistry. Chemistry graduate teaching assistants teach the discussion sections of the lower-level classes to the undergraduates. At the time, his intelligence intimidated me. He seemed confident in his role as instructor, and despite the fact that I had an easy fifteen years on him, if not more, I felt that he was “above” me in some way, probably due to the fact that chemistry was pretty challenging for me at the time.

But when I was chatting with him about our class, I discovered that he had been going through some considerable emotional turmoil at the time, and had been in danger of being kicked out of his graduate program. The man I saw before me was no longer my all-knowing GTA, but just another kid making his way through grad school in the best way he knew how. He suddenly seemed quite young, and I felt the power dynamic between us undergo a palpable shift. Now, I was the worldly older woman with an enviable (to him, anyway) set of life skills, and he was the novice finding his situation challenging.

Even more interesting, he probably felt no change in our relationship at all. He knew I was older than him (of course!), and his impression of me had been of someone driven to learn who always had a smile on her face and never gave her GTA any grief. Our assumptions about each other were, and probably continue to be, pretty off the mark. But again, it was completely unnoticeable, to either of us, until we ran up against their discordance.  Or rather, unnoticeable to me until I ran up against that discordance.  His assumptions held, and he likely remained unaware of them.  Our experiences of the same exact situation were, and remain, completely different.

How much more often does this happen?  How many other situations has my vaunted intuition misinterpreted so completely?  How many situations am I in, right now, where my position and my perception are as distant from one another?

A professor in my major passed away unexpectedly a short while ago, sending the close-knit department reeling. But had I not had close relationships with a couple of the professors therein, I never would have known how troubled they were. In front of classrooms and in their interactions with students, the power imbalance of the relationship clothed them in obscurity; whatever emotions might have been going on underneath, the students couldn’t see past the professor-student dynamic. I noticed myself draping one of those same professors in this power dynamic, even though we have a working relationship outside of the class.

Which means that not only am I misinterpreting my positions, I’m also missing god-knows-what about the people around me. (Certainly, I’m aware that people are missing a whole lot about me.) I realize that the “me” I project to the world around me is perceived as normal. I feel I have has changed in significant and startling ways, which must thereby be visible to those around me, but clearly, that is not the case. People who meet me now have no idea that what they are seeing is any less physical well-being than I’ve ever had.

I have a friend who, before I met her, lost some 60 pounds. I tried to picture what she must have looked like before, and failed. Our eyes aren’t just unreliable, they’re stubborn and arrogant as well. It takes considerable effort to lift some of the burden of assumption upon them and levy it onto our imagination. But I think I need to start doing more of it. After all, how can I expect people to stop making assumptions about me if I don’t educate myself as to the energy required for me to stop making assumptions about them?

If you know someone is in a situation of pain – emotional or physical – try to drape them in it. Try to see it in them while you’re chatting about the weather. It’s almost impossible. I worry in my head that I’m not projecting enough discomfort, sometimes, and that people will doubt my sincerity when I talk about my pain. (Because, of course, other people are thinking about me all of the time.) Even when I encounter someone who is patently depressed and projecting a jaded and fatalistic attitude, a little voice inside my head gets annoyed after a while and thinks just give it a rest already, would you?

What we don’t much think about is that most people – even depressed people – don’t accurately project what’s going on inside them. What is presented instead is a watered-down, situationally-appropriate version of how they’re really feeling. I’m still in pain when I talk about digging my wool coat out of storage. My professors are still sad when they’re talking about the differences between mouse and chicken immune systems. And that depressed friend feels such deep sadness and hopelessness that jaded and fatalistic is about all she can manage.

Our eyes see our own emotions with amazing clarity. So we assume they see others’ emotions just as well. But they don’t. They’re more likely to layer ours on top of a supposed neutral state than to allow our imaginations to assert the more likely scenario of another struggling human, just doing the best he can.

We won’t ever know what another person is really thinking or feeling. But rather than assuming that what we see is the truth, maybe we should instead assume they’re just like us; with emotions veiled and pain corralled behind a fence. Assumptions aren’t necessarily a bad thing. We just need to be better at knowing when they can – and can’t – be trusted.

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

waking up

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

“It’s called… village, or something like that. I know they have one near you. Here, I’ll find it.” My tireless, life-changing-injury mentor picked up her smartphone and started searching. “Here it is; there’s one right in the community center.” She tapped the phone and brought it up to her good ear, waiting for someone on the other end to pick up. “Hello? Is this one of the Adventist villages? I have a friend who is in need of some services, you know, like independent living services, rides to the store and things like that?”

Tears were welling up in my eyes. I blinked them back; I wasn’t about to make a scene in the local coffee shop. My mentor, a woman who suffered not one, but two brain tumors in her forties and lost use of much of the right side of her body, had been talking to me about admission. As in, mine. Of my condition. (Her word, not mine. I preferred acceptance. Apparently, that wasn’t enough.)

“Like when you found out you were depressed and needed medication,” she prompted. “How did you feel then?”

“I was grateful. Because I knew that whatever was wrong with me could be fixed.”

“Aha!” she crowed. “And that’s what you want from this.”

“No.” I knew better than that. I know this can’t be fixed. “I just want…”

“You just want to be able to manage it.”

“Yes.”

“So what if I told you that you were never going to be able to manage it?”

“I…” I broke eye contact. “…you’re not the first—I’ve heard that from other… trustworthy sources,” I admitted. Like Momma Ape.

“Uh huh.”

“But it’s my anger. I don’t know what to do with it. I don’t…I don’t want to be taking this out on the people around me.”

But I wasn’t angry just then; I was tending more towards beaten down. I’d been in excruciating pain all week, and on top of that, I wasn’t getting enough sleep, so by that day, Friday, I had slipped into morose like the ramp had been greased. I felt broken, or rather, heartbroken, like I’d woken up from a dream filled with sunshine to a world that was desaturated and under-lit. I felt like a child who was having her few remaining dreams dismantled piece by piece.

A living representation of one of those dreams was sitting three tables down from us; a woman breastfeeding an infant who couldn’t have been more than a few weeks old. They still looked like one being. I could see the comfort she drew from its presence in the blissful expression on her face. I will never know that comfort. I will never know what it feels like to hold an infant of my own to my chest.

It had been a long week. My pain shot up on Tuesday, and despite two trigger point injections Wednesday afternoon, had only barely gone down. Sitting for any length of time was excruciating. My appointment with the disabled student support services counselor was what set it off; I sat in her office for over an hour Tuesday morning, listening to a spiel designed for someone half my age. I tried to move her along at one point, explaining that I was an adult student, and that I knew how to take care of my own financial aid and was not going to miss my registration window. But she, only perhaps a few years more than half my age, would not be distracted from her script. All seventy-five minutes of it.

Still, my application for disabled student support services was accepted; I am now qualified for a number of amenities, including exams in a facility with an adjustable height table so I can take them standing up, permission to make up quizzes and assignments missed due to absences cause by my condition; campus para-transit; early registration to make sure I could adjust my schedule to my needs, etc. I was torn between the guilt over not having done this months ago, and the sadness over the fact that I needed to do it at all.

Later that week, I went to the DMV and obtained a permanent handicapped hang-tag for my car. “Now, when you need to renew this, you don’t need another form from your physician,” the attendant said, handing me the placard. “You can just renew it online.” I took it in my hand. The temporary one had been a sort of reinforced cardboard, and after three months, it was starting to look pretty rough. But the permanent one was stiff plastic. It has to be, I suppose; it won’t expire until 2018. Sitting back in my car and staring at it, I suddenly hated it. I stuffed it in my glove box. I left it there when I went to pick up my prescriptions.

And all this was my idea, to get a permanent placard, seeing as how I would need one for the foreseeable future, and to apply for disabled student support services. So why was I so upset about it? Why was I chafing at arranging rides to places where I’d need help retrieving heavy items, like kitty litter? Why were my eyes filling with tears as my mentor took down the phone number and website of the local Adventist Church’s independent living resource office?

“I hate this, you know,” I said as she put down the phone.

“Uh huh. I know. You haven’t admitted it yet. You keep trying to control it.”

I thought that I had admitted it. I thought that I had given up control. But I hadn’t; not really. I was still trying to carve out a little piece of autonomy for myself, like my misguided quest to cut out my pain medication, an experiment that has officially failed. It’s good that I took it down a step from the maximum, because it’s opened up some room for me to be able to take the full dose if I need to, as happened this week. But there is no way I am going to be able to go off of it completely. The pain I thought had lessened gleefully reasserted itself once I started classes a couple of weeks ago.

Sitting for an hour each day in a hard, cramped desk has exposed the serrated edges of my physical condition, and I’d been running up against them all week, leaving me chastened and sore. I don’t want to live the rest of my life like this. I really, really don’t. I’m back in school and some of my former professors are throwing these amazing, highly sought-after graduate opportunities at me, opportunities that other students would probably give important appendages for, and I don’t know what to do. This is what I used to want, back when I was slaving away, being such a high-performing student that it almost killed me. Do I still want it? Yes, but…

…but I don’t know if I will be physically able to handle it. My mentor loves to tell me about people trying things and failing, or as she would say, falling on their asses. “But try anyway,” she insists. Because she wants me to figure out what my limits are.

I will try it anyway, but not to figure out my limits. My reasons are that I won’t need to decide whether or not to accept these opportunities until March or April, when the formal notifications go out, and since I don’t know what my physical condition will be then, there’s no point in trying to guess what I will or won’t be able to handle.

But she knows better. And on some level, so do I. I do know what my physical condition will be. Or rather, I don’t know exactly what the “condition” will be, but I do know it will involve pain, in some form or another, for the rest of my life. I know I won’t be able to sit in a chair for more than an hour. I know that this pain will sap my energy and keep me from being able to burn the candle at both ends, as graduate students are invariably expected to do. I know I won’t be able to take anything close to a full load of work, class work, lab work, whatever. I know that my body will continue to betray me if I try to do more than I should; I know the only way to keep my pain manageable is to barely do anything at all.

And maybe that’s what has me so sad. I’d set my sights on another few years of these boundaries and limitations, as I gradually worked my way back up to the point where I could get back to maybe 75% capability. But now, I realize that’s just one more dream that needs to be let go. There is no coming back from this. Whatever I did to myself, which I still struggle to describe, there is no undoing it. I really am partially disabled.

Forever. Not temporarily; not wait-and-see. I may have good weeks here and there where I can function at a higher level, but I can’t count on them. My condition is chronic; it will never go away. Nothing and no-one is going to come riding in to rescue me from it. Not now, not six months from now, not ever.

My ex, the one I split with several months before this happened, the one who has been helping me with rides and errands over these last few months, surprised me last week with an offer to do just that: rescue me, take care of me, live with me. And I turned him down. Because I don’t love him any more, and it wouldn’t be fair to strap him to me – to this – just because it would make things easier for me.

I need to learn how to do this by myself. I can’t have friends running errands for me and driving me to doctor’s appointments forever. If there are support services, then I need to learn what they are and how to use them. I need to stop acting like this is temporary. I thought I had, but all I had done was move the goal posts farther away, from six months to a few years.

But the game is over. I’m the only one left standing on the field. They’re waiting for me to admit it’s over so they can take the goal posts down and turn the field into something else. I don’t belong there any more. I belong somewhere else. I’m just not ready to admit it, not yet.

I suppose I will be sad and angry until I do. Even though everything in my life is telling me that it’s over, I just can’t seem to blow out the last little candle. I want to keep one for that child inside me. I don’t want her to have to learn that none of her fantasies will ever be real. I still want them to be real. I still want to go back to that sunshine-filled dream. I don’t like this dim, colorless place and I don’t want to belong here.

If only the wanting were enough. But it’s not. That’s what makes me so angry about woo; it’s based on the fallacy that if you want something, if you believe something with enough force and enough focus, that you can make it true. But that’s just not how life works. And at some point, I will have to go and break it to that little girl. And then she will never be the same.

And neither will I.

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beware of dog

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

“If I had a dollar for every person who suggested acupuncture to me, I wouldn’t have to work,” I hissed, as soon as the young woman had walked far enough up the driveway to be out of earshot.

“Girl, you have got to chill,” my friend responded quietly from the passenger seat. The weather has turned a little cooler, but that night it was still soft and pleasant, and the windows of my car were open. We spoke under our breaths to avoid being heard by the acquaintance I’d just dropped off. I waited until she unlocked her front door and stepped inside before pulling back out on to the street, a habit drilled into me by my parents in an age before cell phones rendered such niceties obsolete.

We pulled up at a red light and I continued, “Listen, it’s fake, OK? They’ve done thousands of studies and all of them have shown it’s just a placebo. There is no underlying basis or mechanism by which it could work. And it’s not some ancient practice, either. It’s nothing like what acupuncture actually was; it used to involve actual blood-letting. What people now call acupuncture was created by Chairman Mao in the fifties-“

My friend cut me off, “Well, I believe that it works.”

“It’s not real! Someone just made it up! It’s not based on anything!”

“Whatever.”

She wasn’t arguing with me. Her tone was calm as she tapped on her smart phone; some pressing matter at work had divided her attention.

I sighed. “It’s insulting.”

“It is not insulting.”

“Listen, I’ve been in pain every day – every fucking day – for almost a year. Does anyone really think that there is anything, anything at all that I haven’t tried?”

“You have got to stop getting this angry at people who are just trying to help you.”

“I didn’t get angry. Well, not then, anyway.”

No response.

“Well, I’m sure I could have been a bit nicer-”

“You got pretty defensive.”

I know I did. And I did get angry, and was still angry, despite managing to button it up until after we dropped the girl off. But it poisoned the rest of what had been a fun night of frozen yogurt and a stroll around downtown with some friends. Or at least, for me it did. And here it is, days later, and I’m still upset. Because I do have a right to be angry. Just not at her.

I thought I had accepted this. Well, to be fair, I have accepted it. I’m not trying to pretend I can make it go away just by the wanting any more. This is my new life. I get it. But what I realized in the car that night is that I am still deeply, enormously angry about it, a pot on a low boil that emits a rush of burning steam onto the face of anyone who dares peek under the lid. After the woman got out of my car, I lifted that lid myself to vent some of that steam, and what exploded out surprised me with its virility. I didn’t realize I still had so much anger. I didn’t realize that I still have such a long way to go.

Whether or not I am ready, whether or not I should be ready yet, I’ve started the process of working through that anger (and trying to locate my lost faith) with my therapist and another woman who has been my life-changing-injury survivor mentor. It was my idea, no less. But a blockade of dread has sprung up that threatens to derail the process before it begins. I do not want to turn my life back over to God’s protection and care. I have not felt protected or cared for at any time during the last eleven months.

Until a few years ago, I had convinced myself that I was an atheist. Believing in God was for suckers, I decided, and I didn’t want to be one of those suckers. But once I took an honest look at my so-called atheism, I discovered that I’d been paying lip service to it; I’d never really given up on God. And so it wasn’t all that difficult accept the idea that there was some force at work in the universe that I couldn’t entirely understand or explain, and that that force could be trusted to make everything OK.

But these past eleven months have done more damage to that idea than the all of the years of intellectual posturing that preceded it. The only God I could possibly believe in right now would be a malevolent one. I do not want to “move on.” I want to punish someone. Like God, for starters. Yes, I have to admit that things in my life have settled down and that I am able to get back to certain things like part-time work, the occasional evening outing, and a couple of classes. But it’s not because I’m in any less pain; it’s just because I’m used to it. It’s not because of anything that God did or didn’t do. I changed. God, if there even is one, didn’t.

Where was God when I was lying awake in my bed in the middle of the night, unable to sleep for the pain knifing down my back and up into my ears, contemplating surgery that would result in a near-total loss of function in order to make the pain go away?

Where was God that afternoon so many weeks ago when I stood at the door of the mall, twenty yards away from my car, with a 25 pound box of litter and no way to get it and myself back to my vehicle?

Where was God when I was lying on my back in that beach apartment, strapped to an ice gel and waiting, breath by agonizing breath, for the pain medication to start working and take the edge off so I could sit upright, while the rest of my family was reclining under umbrellas on the warm summer sand?

And where is God right now, with my “good” shoulder having caused me so much pain over the last five days that I allowed a new doctor to perform two trigger point injections directly into the source, injections which have so far had a rather less-than-impressive effect?

God doesn’t live here; of that I am quite certain. I’ve been abandoned to a hellish existence only infrequently punctuated by brief respites from otherwise relentless and belligerent pain. That pain has become my God. And I am not going to forgive it, or anyone else, for the wreck that it’s made of me. I used to have faith. I used to have hope. I used to think that things always worked out OK, because up until recently, they always had.

But now, all I have is resignation. Things are not always OK. Whatever force is might be out there, it doesn’t give a crap about me or anyone else. And I’m not grateful for even the few small things that have started going my way; I perceive them as only natural, a product of the inherent randomness of a sample size that has finally grown large enough for the normal distribution to become apparent. It’s not that “God” is finally taking better care of me. It’s just that I’ve finally flipped the coin enough times for the numbers of heads and tails to start evening out.

I recognize that I’m not going to get any better until I deal with these feelings; that this anger and resentment will spread out into and embitter every facet of my life. But I’m just not ready to let them go. Right now, every fiber of my being rebels against placing my faith in anything other than the sheer cruelty of the universe.

I have been abused, and I refuse to go and bow my head to the abuser. I was doing the right things, before this happened. Certainly, I wasn’t hurting anyone. And this horrific thing happened anyway, and it’s ruined me and everything I had built around myself, all of my pastimes, all of my pleasures, my kindness, my gentleness, my solicitude. They’re all gone, the inspiration for them spilled out of a broken vessel only capable of generating those behaviors through muscle memory.

And sometimes not even then, as my experience last weekend illuminated. I’m still in too much pain, too much of all kinds of pain, to be anything other than surreptitiously (or obviously) angry, all of the time. I feel bad about the collateral damage, but never for very long. My anger ensures that I have little sympathy for those around me learning the hard way that unsolicited medical advice is rude and unwelcome. If I don’t get to learn things the easy way, then neither do you. Suck it up.

I’m like that dog that bit me in the elevator. Your fault, for getting too close to a strange and nervous dog. So you got bit. Poor you. Maybe you’ll know better next time.

I’m going to get a t-shirt that says “beware of dog.”  Maybe people will get it.  Probably not, but I can always hope.

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doing the right thing

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

I know as soon as I say “book club,” the regular readers will be expecting a tirade about inanity and ignorance, or better yet, a new and even stranger suggestion from this week’s butterfly gauntlet. But as much as I hate to let people down, I’m afraid this post isn’t going to be like that.

A friend I hung out with over the weekend told me she was looking forward to seeing me at book club again Wednesday night. I’ve known her for a while, but up until lately, we’ve never been close. Recent and somewhat similar challenges in both of our lives have drawn us together, though, and I didn’t want to let her down by not going. I softened the experience by having dinner with her beforehand. We joked about the dimwitted feedback our conditions tend to elicit, even as we prepared ourselves for a new onslaught of misbegotten medical advice.

But there wasn’t any of that last night. Part of the reason was that there was a business meeting afterwards (from which I excused myself) which took a lot of the butterflies out of play. Still, the rest of the gathering wasn’t really all that different than the other ones I’ve attended recently. A little more pensive, perhaps, but it was the same group, some of whom I know, and some of whom I’m just starting to get to know.

The book we discussed talked about change; specifically, about how when we set ourselves to fixing one thing about us that we’ve decided we can no longer live with, we come to find out it’s only the tip of the iceberg, and that a lot more fixing is going to have to happen before we’re through. It struck me as much more relatable than the last few readings have been. Personally, I felt as though I knew exactly what the author was talking about.

It’s not uncommon for us to, at some point in our lives, realize that a certain behavior or attitude we used to rely on is no longer serving our better interests. We decide we are going to buckle down and change that one behavior or attitude, and we hang all of our misery and frustration on the shoulders of it, certain that once we change it, or excise it, or turn it around, everything else in our lives will get better. But no sooner do we manage to get a handle on it and start manipulating it do we discover that that one thing is attached to many other things, and those things are all attached to even more other things. We realize that if we pull too hard on the one string, everything we think and feel about ourselves, even the parts we like, will come completely unraveled.

Some people get to that place and stop. It’s too terrifying to move forward into the unknown; it’s simply not worth the risk. Better to just leave everything alone and hope it all settles back to where it was before. (I suppose that might actually happen, sometimes.) Those people go back and tie a few knots, make a few compromises, and do other retrofixes to keep the whole thing together, and then leave the rest of it the way it is until some time in the future when they’re “ready” to deal with it.

But sometimes, it’s too late to go back. Other times, life does the rest of the pulling for us, whether we want it to or not. And for a lucky few, the thought of going back to the way things were is so painful that we go ahead and yank it ourselves. And sure enough, the whole thing does unravel, and we find ourselves in a very cold, very dark place. Nothing is what it seemed. Nothing is familiar in any way. Even the ground beneath our feet begins to drift and pitch.

We’re quickly overwhelmed by sadness and anger, and frustration at our inability to make any use of the new order of things, and often, our inability to see any order in the new things at all. Why in the hell did we have to get rid of that old thing? It wasn’t all that bad, was it? What we wouldn’t give to have it back! And why did we have to lose everything else with it? Why does life have to work that way? Why does it leave us with a giant, gaping hole and nothing to fill it? It seems recklessly unfair, needlessly cruel.

We do a lot of fighting, clawing and grasping at anything we can lay our hands on, whether or not we like it, or even want it. We so desperately want answers. We want explanations. We need to know why life is so painful; particularly, we need to know why our lives are so painful. Anger becomes rage. Sadness becomes despair. We begin to suspect that the rest of our lives will be spent in this black and chilly place.

But once we’ve been there a while, the winds begin to die down. Slowly, almost imperceptibly, we start get used to it. We gather what we can and put up a shelter. We stumble across a padded chair and drag it over, and gratefully sink into it. We begin to make small mental adjustments, maybe I can deal with this little thing, and maybe that one, too. We come to see there’s no point in clinging to the last remaining threads of the old self, and finally, with grief and a newfound resolve, we allow them to slip away.

And when the last one has disappeared, we are surprised to discover that a new self is waiting underneath. A better self. A stronger self, a more grown-up self. We find we do like the new self better than the old self. We could live with this self. This self does seem to fit into a good life, if a different one than what we thought we wanted. And once we make that discovery, and accept it, we turn around and see that the place we’ve found ourselves isn’t dark at all. It’s full of light.

Book club wasn’t any different than it ever was last night. But I was.

This little fable implies that my journey to a more peaceful place was only moderately difficult, and that the darkness didn’t persist for very long, and that all in all, it wasn’t all that bad. Nothing could be further from the truth. It’s been devastating, and I am forever changed, and not all for the good. I like where I am – mostly – but I fervently wish I could have gotten here some other way. I hope other people can find a way to get to this place without having to first traverse such a deep, dark abyss.

It’s not the unrelenting physical pain, but the psychological pain that has left these deep, gaping wounds. I’m still mourning the complete unraveling of my old life. It still hurts to think of what I’ve lost, an ache sunk into the core of my soul that may never completely subside. And while it’s true that I have lately been able to move past my doubt, I haven’t yet found my way to faith.

But I’ve stopped fighting.

I heard a particular lyric for the first time earlier this week. It went: “not equating death with stopping.”  It’s in a favorite song of mine, and I’d always thought the lyric was, “not equating death with starving.” I’d never really understood it, but I assumed it meant something to the songwriter. But for some reason, as it was playing on my iPod this past Tuesday, I distinctly heard the singer say “stopping.”  The p sound separated itself from the rest of the syllables and pattered out the speaker like gravel onto concrete.

I don’t know why I honed in on it. It only happens in the song once.  I’ve [mis]heard it a million times and never paid much attention to it. But it stuck into me, like a splinter under my skin, for hours and now days after. I looked it up just to be sure of what I heard, but I’d heard it correctly.  “Stopping” is, in fact, what the singer wrote. Not equating death with stopping. And just like that, I understood what it meant.

All this time, I was afraid that if I stopped looking for answers, stopped pushing back, stopped being angry, stopped being afraid, stopped hoping, stopped writing, stopped doing something just to be doing something, stopped anything at all, that the weight of this tragedy would overtake me and I’d drown in its bottomless, sucking well. That if I stopped splashing, people would forget I was in trouble and stop trying to rescue me. That if I stopped chasing it, everything I thought about the world and myself would disappear.

But I didn’t drown, and no-one stopped trying to help me.  And I don’t need rescuing any more. The world isn’t like I thought, and neither am I, but the well isn’t, either. It’s not as deep as I’d feared. I just needed to stop thrashing long enough to let my legs drop so my feet could touch the bottom.

I just needed to stop.

I wasn’t ready before. I couldn’t have stopped before I needed to; I had to need to, I had to feel there was nothing else left that I could do.  And I don’t know how I got to that point. I wish I could tell you. I wish I had some shining bit of wisdom, a deceptively simple key that opens a spiritual door to peace that I could offer to those still shivering in the dark. I did “x” and it happened. Well, I did do “x.” But I did all of the other letters of the alphabet, too, and a bunch from some other alphabets, and even a few I made up. I threw everything I had and anything else I could find at this. I had a seemingly endless stock of ideas about how to fight this thing, and I ran through so many I lost count, and I had no intention of stopping until I’d tried every last one of them.

But finally, not too long ago, I realized I was getting tired. The fighting was consuming me and everything around me. It wasn’t that the injury had taken everything in my life away, although it took a great deal. It was that in pursuit of trying to figure out how to screw a handle onto it and label it and maybe even fix it, I’d let go of what little I had left. I had – I have – such a small supply of energy that I didn’t have an ounce to spare for anything else.

And so, after that last doctor’s appointment at the end of August, even though there were a few ideas still left on the shelf, I walked away. And I didn’t drown, or disappear. And as it turns out, it’s freed up a bit of energy to spend on living. Not a lot; nowhere near what I had before all this happened. But more than nothing, and even a little is a significant improvement over nothing.

I have enough to turn my focus back outside myself again. Enough so that when I see a friend talking to someone I don’t know, I gimp on over and introduce myself. Enough so that when someone wants to tell me about her own experience with pain that lasted a few days, I can express genuine sympathy instead of poorly disguised bitterness. Enough not just to reach a hand out to the world, but to not bat away the hands that reach out to me.

I remember begging, screaming at God to tell me what the right thing was to do so I could do it. If I could just get some direction, any at all, that would be enough, I cried. I sobbed and shouted. I pounded the walls, the floor, the furniture. I threw things, and broke things, and hated things, and hated myself. And eventually, I finally exhausted the considerable supply of angst and anger I had built up inside of me and collapsed, deciding that if no-one was going to tell me what to do, then I wasn’t going to do any f***ing thing at all.

But sometimes, that is what the right thing to do is. Nothing.

It’s important for me to stress that I’m not all better. Not physically – that’s just not going to happen – and not psychologically or spiritually, either. There is a sadness inside me now, a disillusionment. What I feared the most has turned out to be true; life is not fair, and the world is not a safe place. But it doesn’t feel like weight. It feels like strength. I went through this, and will go through more, and I made it. I’m alive. I’m OK. I’ve become that positive, calm person that used to infuriate me so much.

But I’m not going to brag about my trophy. I don’t have one. This isn’t a race, and I didn’t cross any finish line, just a mile marker. I still think it’s a wretched, needlessly agonizing way to learn lessons (not that I’ve exactly made a habit out of doing it any other way), and I know, from Momma Ape’s journey, that once you’ve done this kind of serious damage to your body, you’ve compromised a certain integrity that you can’t get back. My frame is bent, I’m never going to be as road-worthy as I was before, and there are more potholes ahead. Other pieces of my body will break down, too, exhibit A being my left shoulder. Furthermore, I’ve been at this way too long to imagine that whoever is running this show has suddenly decided to stop throwing curve balls just because I’ve surrendered to my…

To my what? I don’t even know what to call this any more. I say “injury” but an injury happens and then it’s over. This has been a life-eating ordeal, and will continue to challenge me, possibly if not probably, forever. It just happens to have gotten easier to deal with, now that I’m accustomed to how the weight is distributed and which way the wheels go, and have figured out the easiest way to harness it to me so I can drag it around. It’s not just an injury, or just a disability, or just chronic pain. It’s not even just a condition, although that’s probably as close as I can get to describing it, in a word.

It’s a part of me now, fully assimilated, almost as though it was there all along. It fits better than I thought it would. But it isn’t that it changed shape to fit me. I changed shape to fit it. And now, everything and everyone else around me fits better, too.

How about no longer being masochistic
How about remembering your divinity
How about unabashedly bawling your eyes out
How about not equating death with stopping…

-Alanis Morrissette “Thank U”

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depress

Posted on September 5, 2014 by C. M. Condo

depress |diˈpres| verb [ with obj. ]
(1) make (someone) feel utterly dispirited or dejected: that first day at school depressed me.
(2) reduce the level or strength of activity in (something, esp. an economic or biological system): fear of inflation in America depressed bond markets | alcohol depresses the nervous system.
(3) push or pull (something) down into a lower position: depress the lever.

Depress is a strange word. The language conventions which dictate a plurality of the English vocabulary would seem to indicate that it signifies the reverse of press. As in ‘decompress,’ or ‘devalue,’ or ‘detach.’ But it doesn’t. It means, as denoted [sic] above, to press down, to suppress activity, to reduce strength. That’s what this last week has done to me. It has, as the example phrase in the first part of the definition states, depressed me. Pulled me down. Sapped my strength. Defanged my resolve.

This is not to say that good things haven’t happened. My new career pursuit is taking off; in fact, I’m already doing a bit of contract work through one of the university research facilities. It’s the first promising sign that I will be capable of gainful employment, and some modicum of financial stability, no matter which way the pendulum swings with regards to my physical capabilities. And as I said not too long ago, I have been in dire need of some good news.

My pain level and nausea, however, have ramped up considerably. This is interfering with my sleep, with predictable results. I’m on a new anti-depressant, and just in time; the fact that I’m having trouble keeping my head above water despite it is troubling in and of itself. It would be easy to blame the low mood on the pain, nausea, and loss of sleep, and leave it at that. But it’s this past week’s session with my physical therapist, and the realizations that came with it, that are the more likely culprits.

As I’ve mentioned in a couple of other posts, my left shoulder, undoubtedly a bit miffed at having to do the job of two shoulders after a relatively cushy existence the first forty-odd years of my life on the non-dominant side of my body, is now a card-carrying member of the the causing-Ape-pain club. It’s now also being treated to the same ministrations previously reserved for the injured one; cortisone injections and an evaluation by my physical therapist.

The news is not good. The cortisone injection did not help. I have the same maladaptive muscle development around the left scapula as I do in the right one; atrophy in the muscles that adduct it to the spine, and improper recruitment of the levator muscles to compensate. This is why I have a knot of pain at the upper inside corner of my left scapula; the levators just weren’t designed for this sort of work, and they remain in a perpetual state of injury because of it. The only way to make the pain go away is physical therapy and pain management. And just like on the other side, improvement will be measured in months, not weeks.

I’m already on as much pain medication – more, in fact – as I care to be, so the idea that the additional pain I’m enjoying courtesy of the left shoulder is going to be around for a while is pretty upsetting. I waited for the tears to well up, but they seemed far away, as though locked in an otherwise neglected closet. At the time, I interpreted this to be a sign of finally coming to terms with the fact that my body has a mind of its own. But the more I think about it, the more I realize that may not be what’s actually going on.

Until I got the most recent cortisone injection in my left shoulder, I didn’t realize how much my pain tolerance had increased. Yes, I’d gotten a shot in the right one the month before, but attributed barely feeling it to an aftereffect of the nerve ablation. But I didn’t get a nerve ablation in my left shoulder. I was expecting some discomfort. There was a needle stick, and the usual pressure. But it didn’t hurt. It wasn’t even all that unpleasant. My brain intercepted it more as a curiosity than anything else. Oh look, another cortisone injection. Oh, that reminds me, I forgot to pick up cotton balls at the drug store yesterday.

“I wish I could give these to women all day,” the orthopedist commented.

“Guys are babies, huh?” I replied. I was getting lidocaine. It numbs the whole area, which puts me in a good mood. I’m all about the cheerful banter when I get a shot of lidocaine.

“I’ve had a couple pass out on me.” he said. “Women are a lot tougher than men.” I laughed, but he continued, “No, seriously. Especially that one under the shoulder blade; those really hurt.”

Um, no it doesn’t, I thought. But I didn’t say so. I was too busy wondering why it hadn’t hurt. Maybe he gave it in the wrong place? But why would the wrong place hurt less than the right one? It was still a big pile of medication being squeezed in between tissues not designed to accommodate such things.

The train ride home, I couldn’t stop thinking about it. What has happened to me? And then, wait – how much pain am I really in? How am I supposed to know any more?  My left shoulder has been bothering me enough to keep me awake nights. On bad days, I’m currently classifying it as a 7. But what is my new 7? Is that my old 9, or even 10? I honestly have no idea. I also have no idea how much it would hurt without all of the NSAIDs and opiods I’m on already.

Not that they’re doing much. Pain medication was not designed to work on chronic pain. Normally, it’s prescribed due to some particular traumatic injury, like breaking an arm, or having your wisdom teeth out. There is an initial insult, and then your body or a surgeon starts goes in and fixes it and the pain gradually subsides.

In a chronic pain situation, though, there is no healing phase. The injury is continuous, like a muscle pressing on a nerve, or an edge of a scapula pushing into a bursa. Pain medication just isn’t equipped to mask that sort that of thing, where fresh injury messages keep getting sent, over and over and over.

Be that as it may, this all means that my left shoulder might have rendered me bedridden if the right shoulder hadn’t stomped in first and done away with my old pain scale and gotten me shored up on all this medication. So I suppose it’s a good thing that I’m still able to function, thanks to that injury to the right shoulder, in a perverse sort of way. More troubling, though, is that it also means that my pain, however much does or doesn’t register any more, is no longer localized to my right shoulder; other parts of my body are also starting to break down.

This realization would have laid me out a few weeks ago. And my experience at the physical therapist suggests that it’s not that I don’t feel pain as much any more. It’s that I’ve simply built up some distance between my emotional reaction to it and my normal state of awareness. That emotional reaction is still going on, somewhere; it’s just locked up in some closet or another, just like my grief over what’s happened to me, just like my chagrin at the knowledge that more pain is going to happen and I haven’t yet found that elusive steady state I thought I had.

Is it the anti-depressant keeping these feelings at arm’s length? Possibly, although I haven’t been on it that long. But real or artificial, the emotional distance is still there and appears to be the latest questionable coping mechanism I’ve employed to deal with the emotional freight accompanying me along this journey.

The idea that said freight is swollen and bruised in some dark corner of my mind that I have limited access to is not exactly comforting. I worry that it’s unhealthy; that I’ve got some psychological pressure cooker inside me, and that if I don’t figure out how to release that pressure from time to time, the lid will eventually blow and that will be a very bad scene.

But even as I realize the untenability of the situation, I’m loathe to dismantle it. I do not want to start opening closet doors to see what’s in them, especially if the contents are under pressure. My distance from the pain this first week of sitting in class has caused me is one of the only things keeping me from giving up entirely, from deciding that my mind is not capable of triumph over the matter of my pain, and that I’ve once again set myself on a course that will prove to be unsustainable.

I’m praying that I just get used to the new pain, and that I’ll eventually be able to bring some less powerful emotional responses to pain a little closer to the surface. Which isn’t the arrangement I have now. I’ve peered through a couple of doorjambs, and I can see the bright, sharp feelings crammed in behind them, saturated with potency all the way through to their hard edges. If I let even one of those out, it will slice me to bits, and I just don’t have the time or energy for that at the moment.

I can’t afford to be pulled down, not now, not just when things are finally starting to turn around. I still may not know what the right way is to handle what’s have happened to me. But shutting things up in closets is the best option among a paltry and unappealing selection of them, and if I’m ever going to be independent, financially if not physically, then this is what I have to do.

So for now, I have to depress my feelings, so they don’t depress me, or reduce my strength. I need it. All of it.

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progress

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

Classes officially started yesterday. Emboldened since I got the brace, I thought that I wouldn’t have nearly as much trouble making it through lectures as I did before. After all, I have been able to go to other functions that require sitting for an hour or more, so class should be no problem, right?

Wrong. During my one class yesterday, cramped in a chair-desk contraption that isn’t comfortable for healthy college students, never mind disabled old women like me, I was summarily reminded of why the last two semesters have been so fraught with pain.

Before class, I felt like a bit of a slacker, chatting with a professor about only being able to handle two courses. However, after sitting through the subsequent immunology lecture for an hour and fifteen minutes, I can confidently say that trying to add more time sitting at a desk would be a mistake.

My casual outings over the summer were nothing like class. I did not have to pay attention to every single word someone (like, say, a lecturer) was saying. I did not have to keep turning my head from the professor to the powerpoint to my notes and back. I did not have to prop my bad arm up on a desk and write said notes, more or less constantly, the entire time. I could choose whatever chair I wanted and even get up and walk around and stretch, if I needed to.

If I could take courses from home while standing at my own desk, viewing lectures online and completing work on my own time, I probably could manage at least one more class, if not two. But courses at traditional universities are still presented in a traditional manner. Or at least, all of the ones that pertain to my major and proposed career track are still traditional.

It’s another reminder of how at odds my outside is from my inside. I’ve put some weight on since finals in May, and I have a subtle figure-8 brace that looks like the straps from a backpack when viewed from the front, but I other than that I look exactly the same as I always have. More to the point, I don’t appear disabled in any way. This does not jive with my true status as someone who is physically weakened and constantly in some level of pain, not to mention often nauseated due to pain and/or medication.

But I’m reconciled to the fact that this is how it’s going to be, so when I talk about my condition, “partially disabled” comes to my lips relatively naturally. The phrase still sounds jarring to my ears once I release it into the air, but I’ve learned I have to say it aloud in order to get what I need.

I also have to be frank about my chronic pain. I wouldn’t have wanted to divulge its effects my functioning before. I would have thought such an admission to be a sign of weakness. But I’m coming around to thinking about it as simply an unadorned fact, about which people will think whatever they like, and upon which their thinking will have no effect whatsoever. I still feel like I will be judged and found wanting, maybe because I myself would have been a bit judgmental before this all happened, but it’s a risk I have to take.  I do need special dispensation.  That, too, is a simple and unadorned fact.

To me, the phrase “chronic pain” sounds deceptively mild. I used to think of a chronic condition as something more annoying than debilitating, occasionally severe but generally not a big deal. But however true (or untrue) that may be for other chronic ailments, that’s definitely not how chronic pain works.

For one thing, mild pain is still pain. One gets better at steering around it in order to think, speak, feel, or act, but it still takes more energy than it otherwise would. It’s like having to detour around a closed street; once it’s been closed long enough, the detour becomes automatic, but it still means driving a longer distance and using more gas. If you imagine that in order to go anywhere at all you have to take that detour, you can see how one’s tank would deplete more quickly than it did before.

More important, chronic pain is not “generally” anything. It is mercurial and callous. It can start early on and increase, or decrease, or stay the same, or it can come and go all day. It can lay you out at some point in the middle of the day without warning. It can keep you awake at night, or push you out of bed in the morning. Or both. Or neither. It can be burning, throbbing, stabbing, prickling, sharp, dull, focused, or diffuse, or some cruel elixir of any of these. It doesn’t care what you have planned for the day, or what you might want or need to do. It doesn’t care about your personal crises or celebrations. It doesn’t care what your kids, parents, friends, professors, or bosses are demanding of you. It doesn’t care if it’s a holiday or your birthday or a snow day or a deadline day.

The hardest thing to learn – the thing that I am still learning – is how not to let it distract me despite all of that. Less than halfway through lecture yesterday afternoon, my pain spiked, pushing up my neck into my right ear and down my back to my lumbar spine. It felt as though someone was microwaving the entire upper right side of my torso; hot, swollen, insistent. Apprehension started ramping up in my stomach. It’s only twenty after! How will I be able to keep writing and craning my neck for another hour? Then I realized I’d missed what the professor had discussed on the previous slide, only adding to my distress. This is a senior-level class – I can’t be missing chunks of these lectures!

I squirmed and stretched, fiddled with my brace, took some deep breaths, and refocused my mind on what the professor was saying. I wrote fewer notes and concentrated on listening more carefully. It took several more slides, but my anxiety slowly subsided (unfortunately, the pain did not), and I got through the rest of the class more or less fine. It was OK. I was OK. I didn’t fall apart, or lose track of the rest of the lecture, or have to get up and leave.

If I’m going to go about my business with the pain along for the ride, I have to become more adept at keeping my agitation in check. I need all my energy for the pain detour; I can’t be wasting fuel having to make a wide circle around the crazy-making, too. So, in a way, my experience in class today was necessary, because it showed me that I was going to have rethink how and where I sit in class and take notes. Fortunately, this experiment was conducted in a low-penalty environment; missing out on a few lecture slides about the syllabus and course overview is not going to affect my grade.

But I have to change the way I do this student thing. When I first went back to college as an adult student nearly two decades removed from her last college course with, I had no idea how to manage the work load and be successful. But I gradually built up a whole slate of little routines that enabled me to perform at an “acceptable” level, taking pride in becoming the ideal student, ruthlessly prepared, projects and assignments only turned in after hours spent perfecting them down to the last detail, always aiming to be the highest-achieving and smartest person in the class.

But these routines, and truthfully, this whole Type-A student self-concept, are no longer compatible with my pain and physical limitations. I can’t afford to remain wedded to such vanities. They’re too costly, and I’m on a fixed energy income. I’m grateful that I’ve had these summer months to practice staying under budget, with its sacrifices and small humiliations.

And besides, it’s not like the old routines were working out so well for me, now that I look back on them. I ran myself ragged trying to break the curve on every quiz, assignment, test, and project. And as a result, every year, I became ill or injured partway through fall semester and would spend the next couple of months recovering from that, all while hiding it from everyone except my closest friends and Momma Ape. Despite advice to the contrary, I stubbornly refused to inform professors and lab managers of my health problems. Some of those problems have been quite severe – I nearly had to be hospitalized at one point – but I didn’t want any special treatment, which I considered a weakness, and beneath me.

I took exams in December of last year in searing agony, and said not a word about it to anyone. Last spring, I allowed myself to ask to take exams in the morning, but only referenced a nerve entrapment resulting in poor physical functionality later in the day, framing it as a temporary injury, and making no mention whatsoever of the excruciating pain.

This fall, I have not only provided my professors with the relevant details of my condition, including the pain, but I have obtained and submitted paperwork to be designated as a disabled student, which will not only allow me to reschedule exams, but will also ensure a bit more leeway with regards to attendance policies. I’m not completely comfortable doing these things. It still feels like I’m asking for something I don’t really need or deserve. But the fact that I’m doing them anyway, comfortably or not, indicates progress. Going back to school is progress, too; this time last month, I was still unsure as to whether or not it would be possible for me to start taking classes again.

It’s nice to be making progress, both in dealing with my injury, and in my life in general. The demoralizing sense of being stuck in the middle of nowhere without guidance or direction has dissipated, and I’m tentatively following a trail of bread crumbs that has recently been revealed to me. Not because I know where it’s going, (that used to be of maximal importance, too, back in another life, it seems), but because it’s going somewhere, and I’m grateful just to be going anywhere at all. And that’s progress, too.

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My Chronic Pain in a Nutshell

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

It’s rare for me to find a post that so poignantly expresses what life is like as a sufferer of chronic pain, but this one touches on everything, how it affects physical and mental states, as well as “real-world” functioning and social interaction.

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fine

Posted on August 29, 2014 by C. M. Condo

“Have you tried hypnosis?”

I’m so used to the way I am now, wearing the brace, walking slowly to maintain my posture, using a special cushion to support my back, that I had forgotten that most people only see the disablement, not realizing what an improvement this is for me. They hear the words “chronic pain” and coming rushing over like butterflies to flowers, and I, having forgotten how many butterflies there are at book club, wasn’t prepared for it.

I should have been. I had stopped going to book club for more reasons than the late hour in the middle of the week. I should have remembered how much I hated the gauntlet of consternated butterflies I had to pass through on my way out. But I’ve been so limited in my excursions that, up until last night, it had been months since I’d had any exposure to social gatherings that didn’t involve people who knew better than to offer anything beyond sympathy and support.

I’d forgotten that most people won’t let a little thing like an extremely rare, catastrophic injury they’ve never heard of stop them from piping up with the one treatment they are sure will work. Of course, they have to check to make sure I haven’t tried it already, with oh-so-concerned looks on their faces, but usually, I haven’t (which, considering how many treatments I have tried, should tell you something right there), and they can barely wait to triumphantly present me with their brilliant solution and accept my undying gratitude.

Typically, it goes as such: someone will ask when it happened, and what caused it, and what “they” (meaning those useless doctor people) are doing to fix it. And as soon as those pesky details are out of the way…

“Have you tried hypnosis?”

It was as we were trickling out into the darkened street after book club last night, and I had no idea how to reply. Despite lots of practice with these sorts of interactions, this offering was crazier than most, and I could not bring myself to validate it. I searched vainly for some middle ground. “Ummm… actually… that’s not-”

“Not your thing?”

“Not my thing,” I echoed gratefully. “No.”

She persisted, “You know, there are lots of stories of people undergoing these major, invasive surgeries while under hypnosis.”

Again, I could not call to mind an appropriate response. Inappropriate responses, on the other hand, were clamoring to get out of my mouth. I’m sorry, but unlike you, I don’t actually believe everything I read on the internet.  I also haven’t tried levitation, by the way, but I’m pretty sure that won’t work, either. 

So I said nothing, and she continued, undaunted, “There’s a friend of mine who does guided meditations, and they’re just so amazing, they’re like, almost real, like you feel like you’re actually transported, but anyway in the real world, she’s a hypnotist…”

I could not contain my sarcasm any longer. “wait, are you telling me her hobby is guided meditation, but in the ‘real’ world she hypnotizes people?”

“Yes, she says if you’re responsive to hypnosis–”

I felt my temper start to coil up inside me. Here we go again with yet another piece of woo claptrap that requires that the patient be in the right frame of mind for “it” to work, whatever the “it” is. It’s just another way of blaming the victim, as though it’s her own fault that this or that treatment, real or imaginary, failed to help her.

“Well, thanks for suggesting it; I’ll look into it” I interrupted, trying to smile. I was unable to command much in the way of sincerity, but I did achieve my goal, which was to end the conversation, however ineptly. She took the hint and started walking to her car, calling reproachfully over her shoulder, “or not, I mean, whatever. I just thought, you know, it’s helped a lot of people.”

As though I was the moron for not taking her suggestion seriously. No doubt she was insulted, and I probably could have been at least a little more gracious. But there is a beast inside of me that starts rumbling and gnashing its teeth whenever someone tries to push their favorite flavor of woo on me, and my ability to control it is not always reliable. Catch me after I’ve already been sitting in a lumpy green chair for an hour, for instance, and I cannot keep the damn thing from breaking the leash.

Which meant that I had absolutely nothing left for the next woman who swooped in, before the other one was even out of earshot, proclaiming, “You know, I was thinking, listening you talk to her back there – have you thought about swimming?”

Unbelievable.

I replied in the calmest tone I could muster, which was perhaps a bit closer to brittle than it was to calm, “Swimming is the reason I’m in this situation. That’s what caused my injury.”

“Well, maybe you could just float in the pool. It’s so nice to float in the pool–”

My voice grew more brittle, and probably a bit imperious, as well. “No. I am not interested in going to the pool right now. Let me explain something to you. I love swimming. I’ve been a swimmer since I was a little kid. Swimming was my favorite physical activity. I do not go to the pool and just ‘float around.’ I swim. I am a swimmer. It defines me.”

I turned to walk away, but she grabbed my arm and pulled me close, “Swimming doesn’t have to define you. You should define it.” She was several inches shorter than me, and eerie reflections of the street lights trembled in her widened eyes.

I wanted to scream. I wanted to shove her away. Hard. Somehow, I forced myself to stand still, putting my hand on hers. “Listen, I know you’re just trying to help,” I said quietly, “but I really just need to get home.”

She released me. “I’m just saying, it’s really nice to float in the pool.” She may have said something else, but I didn’t hear it, muttering to myself as I got in my own car, conveniently parked right up front in the handicapped space. Seriously? Float in the pool?Would you tell a runner who had torn his ACL to just go to the track and stand around and watch other people run? What is the matter with people?

Before this comes off as a total wash, I need to qualify that most of the gathering was absolutely delightful. Each one of my close friends came up to me with a gentle hug and a genuine smile, expressing how happy she was to see me. When we were standing around and chatting over cake (there was a birthday), one of them even pulled me aside and intimated how nice it was to have me back, and that my contributions to the discussion had been very much missed. Another could not conceal her look of horror as I gave her a brief rundown of my ordeal and the resulting chronic condition. “Please don’t look at me like that,” I assured her. “I’m fine, really.”

But maybe I’m not as fine as I think I am. I am better than I was, but if I was ever as sweet as my friends were last night, I have not made it back there yet. It’s true that I’m calmer now; I don’t cry so much, I am more patient behind the wheel of a car, and when I’m standing in line at a store, breathing deeply and allowing the shoulder pain to ebb and flow as it will. But as I replay the video of the post-club freak show in my head, I am unhappy with how poorly I reacted to the women who were just being solicitous. Or what they thought was solicitous, and who am I to tell them otherwise?

My walls have grown thin. I used to be better at keeping my self-righteous anger in check. I had developed the ability to cage horrible things before they flew out of my mouth. But this blog, and my solitude, and needing to practice brutal honesty about my pain and physical limitations, has laid waste to many of the barriers and gate checks I had built up to keep my snark under wraps. It seems I need to go back and do some patchwork if I’m to be going out more frequently again.

Which means that maybe I shouldn’t be going out more frequently, or at least, not just yet. I’m tired, mentally tired, not just physically. I’ve been learning how to simply be in pain, to feel it as it’s happening, without pushing it away, without running for my pain medication or my ice gel when it shifts and sharpens. To let it in without giving in to the desire to cancel my plans for however-so-long in hopes it will pack up its knives and settle back down to the dull ache I’m blessed with on quieter days.

I’m doing this because I thought it would take less energy to interact with the pain in a less adversarial fashion, but that hasn’t turned out to be the case. More important, I’m doing it because I’m tired of the daily obsession with it, fighting with it, trying to figure out how little or how much of it I will have if I do something, or don’t do something. I simply refuse to live like that any more. But it’s taxing, and it’s hard. It’s much, much harder than I thought it would be.

I thought I would get used to it, and maybe I will. Maybe I’m doing too much too soon (I’m sure I am). But I’ve been stuck motionless for so long that now that the bonds have loosened I’m desperate to escape. I want to cut them all free and run and run and run until I fall down from exhaustion. Real exhaustion, physical exhaustion, with the head rush and the swooning endorphins. I told myself I could do this. There’s a little voice inside me now wondering if maybe I can’t, or shouldn’t.

But I don’t want to hear it. I will do this, no matter the cost. I have to. I’m going to be free. I’m going to be independent. The pain doesn’t matter. It doesn’t matter. I won’t let it define me.

I will define it. And I will be fine. I will.

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