I hate oprah

Posted on May 2, 2014 by C. M. Condo

A large stack of glossy, colorful magazines sits by the chairs in the waiting area for my physical therapist’s office. It’s comprised largely of Oprah magazines.  I stare at them twice a week.  The colors change, but everything else looks the same; there is no indication of the passage of time, either in the article titles or the Oprah photos behind them. Here are some actual examples (I took pictures of them with my phone; yes, I did that) of titles on the covers of the magazines:

How to Feel So Much Better!
Getting Out of Your Own Way!
O’s Guide to Loving the One You’re With!
Change You Hair, Change Your Life!
Find Joy In Every Day!
Getting Unstuck!
Instant Mood Boosters!
Meditate to Lose Weight!
Unlock Your Inner Superstar!

The spine of every issue contains the month and the title! (All About Hair! Make This Your Year to Shine!) With an exclamation point at the end! (Except for last June’s Wow! Reads because even Oprah thinks that words should outnumber exclamation points. Where possible.) The prescription for modern-age blues is apparently ecstatic coping advice from an egocentric multi-billionaire whose only claim to fame is the ability to hypnotize women into believing that they can make themselves happy by changing their hairstyle, losing ten pounds, purchasing a vibrator and main-lining acai berry and green tea.

Today’s women’s magazines have completely given up on pretending they are anything more than product catalogs that women have been duped into paying to purchase. Each one is a carefully constructed collection of print ads with images of impossibly beautiful women beating back age and fat by sheer force of photoshop. The smattering of articles only serve to tout the products in the ads, along with a token female celebrity feature where the interviewer spends the first paragraph describing how busy she is and how vibrant she looks without a “stitch” of make-up (a phrase that needs to be stricken from the the English language right now), and of course, no plastic surgery. (In the next paragraph, she will attribute it all to Pilates and a raw diet.)

If you flipped open a naturopathy catalog (a mail order catalog) and an Oprah magazine and laid them side by side, would you be able to tell which was which? I’m not sure I would. Probably the Oprah magazine has higher quality photography. It’s a well-photographed shill for the self-help self-actualization industry in this country that is living large off of women’s doubt and insecurity about the fact that their lives aren’t as fun and joyful as they think they should be; women who entertain a closet fantasy of having drowned their children at birth and flown off to a remote island in the tropics where they support themselves by writing advice columns for women’s magazines while laughing into their piña coladas.

I, too, am a victim of the Oprah magazines of modern culture, along with countless exhausted, striving, perfectionist others. Just another statistic. (Put me in the fibromyalgia pile; I have friends there.) Do do do! Be thin! You can have it all! Don’t decide between two things, you might pick the wrong one! Just a little ingenuity and you can integrate them both!

No. I can’t, and I won’t. And not only can I not have it all, I can only have a few small pieces. So rather than trying to cram as many different chocolates down my throat as possible and then wondering why I feel sick, I’m going to peruse the chocolate map on the inside of the lid and only pick a dark chocolate with coconut, a chocolate truffle, and a peanut butter fudge. Those are the ones I like the best. And I’m going to make a strong cup of coffee and get a blanket and sit on my front porch and eat them one at a time as I watch the sun come up, and let my mind wander, and maybe decide on one productive thing to do today. Or not. Maybe I’ll just sit on my dirty rugs and play with my cat.  And write an article for an Oprah magazine.  Sit on your dirty rugs and play with your pet!

Somewhere, there is a clandestine society of women who feel their feelings. They burn an Oprah magazine every month as part of their ritual of defiance. On the longest night of the year, they gather up all of the Cosmos, Marie Claires, and Seventeens they can find and build a bonfire and dance naked around it, and whoever can shake her wrinkles and fat rolls the hardest gets a crown made of papier-mâché’d hershey’s kisses wrappers.

I need to join that secret society. I’m going to swipe one magazine from physical therapy every time I go until I have enough to fill a trash can and set fire to it during a full moon so they can find me.

Or perhaps two weeks after the full moon. Make the Most of Perimenopause!  Go Green – Use Your Hot Flashes to Power Your Coffeemaker!

Posted in Aspect I | Tagged , , , | 4 Comments

off-putting and putting off

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

Don’t ask me how I’m doing. I don’t want to talk about how I’m doing. How I’m doing is too complicated to lend itself to brief, polite conversation. It’s been my experience that an acquaintance (oh look, “quaint” is in the middle of that word, how appropriate) who asks how I’m doing is only asking so I can be impressed by the fact that she remembers that anything has happened to me at all. She doesn’t really want to talk about it. She wants to have a conversation that goes one of two ways, with me saying either, “I’m better since [procedure]” or “[procedure] didn’t work so I’m doing [procedure] instead.”

Twice in the last week, two separate people have asked me how my “operation” went, causing them to unwittingly come across as obtuse rather than caring.  (A nerve ablation is not an operation.)  Since I cease to exist for them once I exit their field of view, they are unable to imagine that many other things of consequence might have happened to me since then, such that the nerve ablation has long since been dealt with and archived.  And I, with too little thoughtfulness to spare these days, resent the fact that I’m expected to infer that they care when it is patently clear that they don’t.

The woman who asked me last night is the particularly annoying type who would rather complain about her life than get out of her own way. I think I’m better than her, so I condescendingly answered, “What operation? Oh, the nerve ablation. That was a month ago. It helped some.” The woman, discerning that I was not impressed, pressed on, “So that was the only option? To ablate the nerve?” (It’s not the only option, any more than setting fire to your house to get rid of termites is the only option, but none of the other options have worked.)  I said that it was, and that it was necessary to break the pain cycle, and then I walked away. And she probably thought, “What a bitch.”

Fine. You can think that, you with your petty little problems like being tired all of the time. (Everyone is tired all of the time. Get over yourself. Eat something besides candy all day.) I am still very messed up in the head about what’s happened to me, which makes your lack of self-efficacy seem rather small in comparison. So don’t take it personally if I put you off, because the alternative is ripping your head off.

I am an a**hole right now, and I know it, and I’m not perturbed enough by it to do much about it. I lean on my horn in traffic and scream at my freezer when things fall out if it. I feel like the can in a cosmic game of kick-the-can, and anyone who happens to brush up against me is accused of kicking me even if he didn’t. I don’t want skin-deep sympathy. I want to be left alone to figure this out. I want to talk about it on my terms, not those set by polite society. I’m not ready to fart sunshine about this yet. So forgive me if I’m a little off-putting.

I’ve had to put huge chunks of my life off. For some of them, off as in never, rather than off as in put something off until later. My doctor is concerned that I will be going back to full-time student status next Fall; she thinks I might not be physically ready for it. She’s not pleased about the summer class I’m taking either, but if I have to stay in this apartment all day, every day, I will be more than a little off-putting. I’m only willing to put so much off at this point, particularly since my pain level doesn’t seem to have much of a connection to my activity. So I’ll just do what I did at the beginning of this past semester: drag myself into the professor’s office, explain my condition as briefly and explicitly as possible, and thank him in advance for his understanding. I will endeavor not to be off-putting while I am doing this.

I don’t want to be off-putting. But in putting off parts of myself, I’ve lost some other bits that were seemingly unrelated, like my friendliness, my gentleness, my willingness to let people be wrong about things, and my ability to stop every thought that forms in my head from coming out of my mouth. I can’t seem to pry those things apart from the others, which only makes me more angry and more off-putting. I keep trying to put boundaries and definitions on what’s happened to me, but it breaks through each new fence and exceeds each new description. It’s in everything I say and everything I do, and it’s resisting my attempts to push it aside, to keep it in its place, or to leave it somewhere and go off and do something without it.

Of all of the things I’ve had to put off, the one thing I wouldn’t mind a little distance from is sticky and obdurate. The only times I escape it are when my shoulder has to be numbed to allow a doctor to perform some procedure or another on it. The few times that’s happened, I’ve had a glorious 12 hours of pain-free, near-normal existence. But by the next day, the jailer has come rattling his keys and I’m back in my cell, the memory of my brief time out in the sun already fading.

Justified anger is a dangerous place to put down roots, but now that I’ve stumbled into it, I remember what I always liked about it. I get a secret little thrill out of having such a short fuse that people are scared of me. I enjoy feeling energy coursing through my limbs and veins, self-destructive as it is. After six months of being throttled by my powerlessness, it feels good to have some power back, even if it is only the power to cause harm. Of course, I will get tired of this at some point, and the energy will run dry, and I’ll be left feeling more empty than before.

But right now, it’s making me feel vibrant and purposeful, both of which have eluded me since before this all started.  I’m not ready to let go of those things just yet.  I’d like to put it off a little while longer.

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

happiness

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

I have a pet peeve, and it is internet philosophy. I’m sure you’ve seen those articles with “5 things you didn’t know about successful people” or “10 quick tips to a better life” or “The real secret to happiness” and such. There’s one in particular that has me a bit wrapped up, the sentiment of which is that the way to find happiness is to “learn to love what you have.”

Really?

I’ve expended a lot of bandwidth here expounding on how little control we have over what we have.  What I have is a lot of anger and resentment over what’s happened to me, and I don’t see loving it in my future. There are a few things I’m grateful for, not the least of which is comprehensive health insurance, but that is a tiny violet in an overwhelming sea of dandelions.

Dandelions are tenacious little buggers. You pull on them and the stems break off, leaving their hardy root systems untouched. If you try to get at one that’s sporulating, you cause it to disperse little seeds everywhere. You can’t mow them, and if you try to dig them all out, you won’t have any lawn left.  That’s what my chronic pain is like, an embedded, tenacious weed. It’s got a nice hardy root system and the meds are akin to pulling off the dandelion heads – a temporary fix, at best. Drastic measures, like the nerve ablation, have caused it to spread out to the surrounding tissues and sprout up there.

The doctor says the muscle spasms that are causing my continued pain are a normal part of the healing process, a process that she speculates could take another six to nine months, at least. She intimated that another nerve ablation may be in my future. Bright side (in a manner of speaking), she was tentatively positive about the amount of functionality I might be able to get back. But hold on a second, because… six to nine months? I’m going to be on all of this medication for months? I mean, I’m starting to adjust to the idea that I’m going to have to treat myself a little bit more delicately from here on out, but I didn’t sign on for a year – or more – of opioids and muscle relaxants.

How am I supposed to love that? How am I supposed to wrap my arms around this trammeled existence and convincingly say to someone that I love it and am grateful for it? Because I’m really, really not. On a good day, I’m furious about it. On a bad one, I’m numbingly depressed. That’s not love. In fact, it resembles an abusive relationship. If my chronic pain was a boyfriend, all of my friends would be trying to get me to dump him. They wouldn’t be counseling me to “learn” to love him.

It’s such crap, these neat little clichés. Real life is messy and difficult. It’s too few violets and too many dandelions. It’s incredibly self-centered for someone in a position of power and wealth to admonish those of us on the fringes for not “loving” our lives enough. As if it’s our own fault that we’re not happy. As if we could be happy, but we’re not just not trying hard enough.

There’s a good bit of research about the fallacy of effort versus luck. People with high-paying jobs often misjudge the balance between the two. They assume that what they have is mostly due to effort rather than luck, when in fact, just the opposite is true. We don’t choose what country or family to be born in, or what state, city or town to grow up in. We don’t choose our parents’ abilities – or inabilities – to open doors for us, provide opportunities, network and nepotize on our behalf. Most high-paying jobs go to people who’ve been groomed for success since birth, a circumstance over which they had no control whatsoever. Yes, effort is important. But the fact that you make a lot of money doesn’t necessarily mean you’ve expended any more effort than someone who makes less.

Almost everyone expends effort to do what needs to be done, in their jobs, in their homes, throughout their lives. People in pain are no different. But it’s also hard for people to understand the difference between effort and luck when it comes to their wellness, and that diminishes the amount of empathy they can have towards someone who is ill.  There’s a perverse sort of elitism among those who are physically competent and athletically gifted, as though they “made” themselves that way instead of being born that way.

But make no mistake, our physical abilities are due almost entirely to the genetic programs we got from our parents and the environments with which we interact, and both of those things are heavily weighted towards luck. Someone who works ten hours a day and has a two-hour commute via public transportation might be able to do more pull-ups than you, but because he doesn’t have the luxury of spending 10 hours at the gym every week (or being able to afford a gym membership), he’ll never know – and neither will you.  Similarly, when it comes to debilitating injury and disease, the last thing someone wants to hear is that it was largely due to chance, because that means that no matter how much effort they expend, it won’t save them from tragedy, should it chance to occur.

Some things are easy to love, like a house by the ocean, or the luxury of being vegan, or being able to quit your job to raise your kids. But some things are impossibly hard to love, and the difference between them can be smaller than anyone realizes. More often than not, it’s just a matter of luck.

So don’t learn to love what you have.  Learn to appreciate it, and the various turns of fate that endowed you with it.

Seems a lot less honorable that way, though, doesn’t it?

Posted in Aspect I | Tagged , , , , , , , | 4 Comments

arranged

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

Pain and soreness this morning are way up from my usual, and as usual, I don’t know why. I was already on a downward trajectory by Wednesday, but despite taking it easy at physical therapy on Thursday and not having class on Friday, that trajectory took a steep dive last night.   Now I have an ice pack strapped to my shoulder at 7:45 AM on a Saturday and I’ve had to cancel my plans for the day so I can rest and wait for it settle back down.

This is my new normal. Activity, pain, rest, repeat.  It was a sudden change: invincible one day, incapacitated the next. Although it only happened six months ago, it’s already disappeared from my rearview mirror, as though I’ve traveled untold miles since.  And indeed I have, but in such a novel direction that my self-perception is a long way from catching up.

It’s like I’m in an arranged marriage with someone I don’t know. Now that I’m living with that person, I’ve grown accustomed to the day-to-day mundanities, but my psychological adjustment is coming along much more slowly. The new me is not a bad person, or even an unlikeable person, but she’s a stranger to me, and I’m resisting getting to know her better.  I keep running up against the fact that I had no choice in the matter; of all the things I thought I was building with my life, this wasn’t anywhere among them.  And since I wasn’t prepared for it, I struggle to gauge how much information to pass on to interested parties. The word “disabled” feels strange on my tongue, and carries with it a host of connotations which don’t apply to me even though the technical definition does. I feel obligated to qualify it with phrases like “nerve injury” and “extent of my disability remains to be seen” and other such accessories, as though I am dressing up a broken mannequin with a sequined scarf in the hopes it will distract from the damage.

I have no idea how to accessorize the new me. The physically active, multi-avocational persona I cultivated before this happened defined me, or rather, it was how I defined myself. That’s gone now, and I don’t know what’s left or how to describe it. When someone asks you about yourself, the first items you reach for are your interests and activities. You list hobbies and abilities, and things you like to do, and you throw in some particular personality quirk or two, such as being a little OCD when it comes to organizing your closets, or leaving notes on your front door to remind yourself not to walk out without your phone. (Lucky me, I get to keep that last one.)

My list is empty.  All of my former branches and leaves have been cut away, leaving only a nondescript trunk.  I’m not the tree I thought I was, and I don’t know what kind of tree I will become.  Do I flower in Spring, or am I an evergreen? Am I a fruit-bearing tree? Am I easy to climb? Do I shelter birds and squirrels or snakes and raccoons? Do I bend with the wind like a weeping willow, or am I stocky and compact, like a Japanese maple? I don’t know. I used to have answers for these questions, and now I don’t. I used to think that I could choose whatever answers I wanted, but we don’t get to choose, no matter what we read in magazines or on the internet.  I’ve discovered that our life paths are not nearly so mutable as we’d like to think.

The only thing we can control is whether to fight or to accept, whether to walk or be dragged, and whether to regret or make peace. It’s hard, and it’s emotional, and I wasn’t ready. I wasn’t done being a young person yet. Now that’s been ripped away from me, and I’m still clinging to the shreds of it left in my hands.  I don’t have the willingness to learn who the new me is.  After all, since I can’t choose anyway, what difference does it make?

As hard as that is, adopting the new mental calculus is even harder. I spent most of my adult life trying to do more than I was capable of, nearly always to my detriment. Now I’m trying to cultivate the habit of doing less, but it’s incredibly foreign and I’m not very good at it. It still feels wrong, like a cop-out, or laziness. Maybe I will be OK, I keep thinking. Maybe it’s not going to be as bad as I think it is. But then I try to lift something from the top of the fridge, or pull out a heavy drawer, and the shock of pain and weakness reminds me that even if it’s not always going to be as bad as this, it’s never going to be like it was.

And this is the new me. I have to get to know her, and learn to love her, because now we’re stuck with each other. It’s been arranged.

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

reach out

Posted on April 24, 2014 by C. M. Condo

I hate this. I hate this undecorated life and frail body. I hate that when I try to explain to my friends what has happened to me they stare at me uncomprehending, uncertain of what the right thing is to say. I hate having to listen to the wrong things from people who don’t know me as well: “everything has a purpose,” “God has a plan,” “acceptance is the key,” “opportunity for spiritual growth.” I literally cut someone off last night. She started to ramble on about a spiritual purpose behind pain and I wanted to strangle her. Instead, I just interrupted her, smiled and said thank you, and squeezed her arm and walked away. She looked a bit confused, but you know what? I just don’t care.

If all you have to offer me are platitudes then do me a favor and shut up. SHUT UP. For god’s sake, leave me alone. You know nothing about what is happening to me right now. I am not a vessel for your latest spiritual discovery. Don’t tell me how strong I am. You only know what this looks like when I’m out in public expending all of this extra energy to appear normal-ish. You don’t know what it’s like when I’m alone inside my house and inside my body. And you really, really, do not know what I need to hear.

No-one is willing to say any of the things I need to hear. I need to hear that this is all a dream I will wake up from. I need to hear that once this is all over I can go back to my old life again. And more than anything, I need to hear someone tell me that it’s going to be OK and I don’t understand why no-one seems able to bring themselves to do that. Perhaps they’re afraid I won’t believe them. My doctors are probably too distracted by trying to repair as much of my broken body as they can to worry about how lonely and damaged I feel on the inside. It hasn’t occurred to them to reach out to me, close that clinical gap, and tell me I will be OK.

But it’s how it feels on the inside that scares me. The outside is tangible and knowable; there’s a beginning and an end. But the inside is bottomless, and I’m frightened of it. It’s daunting to wake up inside this fragile, unreliable body every day and wonder what my day will be like, and what my pain will be like, and whether I will be able to sit through class or drive to the store.

Tell me I will be OK, whether it’s true or not.   I know you don’t know what or where the end is and whether I will be OK with it. I just need someone to stop trying so hard to figure out what the best thing is to say to me and put their arms around me instead. Stop treating me like something that will break if you touch it. I know I terrify you but I’m still me on the inside. That woman you knew before is still here, trapped inside this enormous thing that’s happened to her, a thing that’s so big that she can’t see around it, or through it or past it. I need you to see past it for me; I need reassurances, not explanations. But instead of coming closer, people shy away. I never understood why my friends were so grateful when they would confide what they were working through and I’d just hug them and tell them it would be OK. I felt as though I was being incredibly unhelpful. But now I’d give anything for that seemingly small, unhelpful thing.

Because I don’t want your help. I don’t want you to try and make me feel better. In fact, all of your attempts to do that just belittle what’s happening to me, as though mere words could shorten my journey through this life change, or alter what will happen at the end of it. And it keeps you at a distance and keeps you from sympathizing with me, as though you could keep the awful reality of what’s happened to me at bay by not stepping into the psychological muck that surrounds me. So stay away if you can’t handle it; I don’t need you to solve my problem, or tell me how to make my way through it.

But if you’re not afraid to be here with me, then just be here. All I need is for someone to hold my hand while I’m doing this. I just need to know you’re there, and you won’t let me slip away.

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

the end of the beginning

Posted on April 21, 2014 by C. M. Condo

Lately, I’ve found myself slipping more and more often into that nasty little place where everything is annoying and everyone is a moron. People can be so thoughtless, and my tolerance for it, normally rather generous, has been burned down to about zero. I wish I could blame the pain, but I’m in a lot less pain than I was before, for the most part. I’m still not sleeping through the night, but part of the reason is that I stopped taking the medicine I take for my insomnia because it was interacting poorly with the muscle relaxants I take at night.

But maybe that’s not the only reason my sleep is such a mess. My dreams are awful, vivid experiences which inevitably involve me being thwarted in what I’m doing, or blamed for hurting someone, or trying to put something together or get someone to understand what I’m saying and they and everyone around them all insist that I’m doing it wrong. I wake up tensed and cramped, and as exhausted as I was before I went to sleep, and this happens two or three times a night, sometimes more. I’ve started staying up later because my bed hasn’t been much of a refuge, so my sleep schedule is getting perturbed and I’m sure that’s not helpful, either.

I’m not angry at everyone else, though. I’m angry at myself for not handling this better, and when I’m angry about something, it usually means that I’m upset or afraid. My life is starting to come apart and I’m torn between a sincere desire to hold it together and an inability to summon the inner reserves to do so. I’m tired, not just physically tired, but emotionally spent. I’ve been trying to keep my chin up about all of this. I’ve been trying to get to a place of acceptance of the new order of things, or at least trying to pretend I have some sort of acceptance of it, in hopes that it will help the process along. But it’s not helping it along, it’s just making me bitter and short-tempered.

Pain and disability are by their nature lonely ailments. I’d give anything to have someone to share this with, but it doesn’t work that way. My friends and loved ones can walk away from this from time to time, but I can’t. I can’t escape back into my life like they can because this is my life now. And I’m angry about it and I’m upset about it and I don’t want to accept it and I don’t want to be strong about it. I just desperately want it not to be true.

I’ve lost someone, someone close, someone I knew well, lived with, loved, and had even learned to like. I’ve lost my physically strong, capable, helpful self who was always there lend a hand.  Helping other people made me feel good and now I can’t do it any more; I have to ask other people to help me and I don’t like it. It took me so long to accept myself for who I was before this happened, and now I have to start over and learn to accept this new self and I don’t want to. I want the old one back and I’m angry that I can’t have her. I don’t want to learn to like this diminished, broken, needy creature now living in the house I used to live in, who doesn’t look right in my clothes and isn’t comfortable my bed.

It’s not that my life was perfect before – far from it. But I’d give anything to be back there dealing with the ordinary challenges of living. This burden I’ve been saddled with is so heavy and I’m so tired of dragging it around with me.  I keep wishing someone could help me carry it rather than me having to do it all by myself. I keep waiting for the time to come when I can put it down and that time keeps getting farther and farther away. I’m starting to realize I will never be able to put it down, that there isn’t anywhere to put it, that I just have to hold it and wait until I get bigger, or it gets smaller, or maybe both, or maybe neither.

I know that my life has undergone a permanent and significant change, but the idea of that is so overwhelming that I don’t even want to approach it, never mind try to wrap my head around it and deal with it. I’m afraid to let myself feel how upset I am about it, how sad I am, how beaten down. There’s so much emotional pain inside me that it feels like is has no end. And I’m afraid that if I start to cry about it I will never, ever stop.

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

upon closer examination

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

I’m still not used to the new order of things around here. Last night I erroneously told a friend I’d be able to meet her for coffee this morning before I make the half-hour drive to my parents’ house for the holiday.  But what was I thinking? There’s no way I can sit in a wooden chair for an hour before I make that drive. I could do one or the other, but not both.  I keep finding more ways, daily it seems, in which I can no longer operate like a normal person. Not only can I not sit comfortably for more than fifteen or twenty minutes, but I can’t do anything that requires the use of strength or pressure with my right arm, and I am right-handed.

We do a lot of mindless stuff with our dominant hands; I had no idea how much of my life was right-sided. I [used to] pour milk with my right hand. I eat with it. I wash and brush my teeth with it. I put keys in locks with it. I had been vacuuming with it, holding the vacuum in my right hand and the cord in my left and vacuuming the room from left to right.  I tried to reverse that, vacuuming with my left hand, and I kept running over the cord.  I empty the dishwasher with my right hand. I cook with it. I brush my hair with it. I put earrings on with it. I iron with it. (Try to iron with your non-dominant hand. It’s fun, especially with the added bonus of potential serious injury should you mess up.) I put things in and take things out of ovens with it.

Here in the U.S., we live in a right-sided world; everything that can be is designed to be done with the right hand. Go look at your microwave. I bet the controls are on the right and the door swings to the left.  It’s likely your clothes dryer is configured in much that same way.  Which side of a soda machine do you stick your dollar bills in?  Look at your ATM the next time you use it, and the position of the card slot and and keypad.  Or the grocery store checkout line; notice how having the belt to your left accommodates loading it with your right hand.  Think about the last set of double doors you went through, and which one you picked. Few people realize how heavy main doors are; you have to engage your shoulder to open the front door to a building. Try reaching across your body to pull open a right-side door with your left hand. It’s awkward. I wish every door was PUSH instead of PULL.

I’ve suddenly become aware of motions that haven’t interested me since I was three years old.  As I slowly accommodate myself to the full extent of my injury, the list of things that I must now engage in carefully, if at all, continues to grow.  Much of it is probably temporary, but what if I had damaged my shoulder beyond repair? I’d have to undergo a wholesale life reset, probably with a steep learning curve. When people think of injuries forcing someone to use their non-dominant hand, they think of writing, or driving, or some other prominent task, and they forget about all of the little one-handed – dominant-handed – mundanities we take care of without noticing it.

In this limited-capacity life I’m living, little things have become large things. Much occurs in our lives that escapes our awareness, and with good reason; we can’t dwell on the little things because we have to focus on the big things, things that need attention, time, and energy.  But when everything needs attention, time, and energy, the dynamics suddenly shift, and microcosm becomes macrocosm. I’ve been transported to a child’s world, so diminished in scope that I have time to notice – and wonder why – my microwave door opens to the left. There’s an odd sense of discovery to living like this; it’s as though I’ve turned a microscope on my activity.  I’ve found a level of complexity and detail I’ve never seen before.

Even when your life shrinks, it grows. Once I was able to tear my eyes away from the big things I’ve lost, I could look anew on the little ones I’ve been able to keep. It’s shown me that even minor movements are actually a full set of delicate, carefully timed maneuvers.  Small discoveries are potent, and the mundane becomes awesome and strange. Spend a day watching yourself do things like buttoning pants or flipping pancakes, you’ll have a new appreciation for how intricate your life really is.

*special thanks to christellsit for the idea for this post

Posted in Aspect I | Tagged , | 1 Comment

Three Things Not To Say To People With Chronic Health Problems (And What You Can Say Instead)

Posted on April 18, 2014 by C. M. Condo

It’s been a tough week in the ape preserve, I know, so as we close in on a holiday weekend, I thought I would lighten things up with a bit of chronic pain comedy.

Three Things Not To Say to People With Chronic Health Problems (and What You Can Say Instead)

(1) “I know this [specialist] you should see…”

Bear in mind that the person who is suffering is extremely motivated when it comes to seeking out medical help. After all, she is the one who has been unwell for this long. I assure you, she has been relentless in her pursuit of options to improve her condition. Internet searches, references from other doctors, exercise, yoga, meditation, massage, detoxing, changing her diet…I think you get the idea. She is thinking about what she could do to mitigate her health issues in every spare moment, often several times a day. As such, the chance of you making a suggestion that has not already occurred to her and been attempted is infinitesimally miniscule. If you’re feeling that lucky, play Powerball instead.

(2) “Wow, is that still going on?”

I’m sure this seems perfectly innocent. Many times, it may very well be. But it also has a passive-aggressive undercurrent. It implies that the sufferer should have gotten better by now, so perhaps she’s not trying hard enough. Or that the sufferer is making things out to be worse than they actually are and needs to toughen up and get over herself already. Or that the sufferer is engaging in a form of attention-seeking behavior that has now worn thin.

What’s sad about this is that no-one is more surprised about being unwell this long than the sufferer herself. We are not attention-seeking hypochondriacs. We share the sentiment that we should have gotten better by now. We, too, feel that this whole business is wearing thin. We would like nothing better than to be able to report that we are on the mend. We secretly suspect that if we did something differently – were tougher, perhaps – that we could have gotten past this by now. When someone implies just that, it fuels the negative self-talk that dogs us on particularly challenging days. Please, don’t feed the animals.

(3) “Let me know if there’s anything I can do – call me anytime!”

Allow me to qualify this: If it is actually true that you are able and willing to pick up the phone at any hour of the day or night, and if it is actually true that you have plenty of free time during regular business hours to help out someone who needs an errand run or a heavy thing lifted, then, by all means, go ahead and say this.

Otherwise, don’t. There is nothing wrong with not being able to help someone out. What is wrong is leading her to believe that you are able to so you can feel better about yourself. This whole ordeal has sensitized me to the fact that very few people have cultivated the life skill of only saying things they really mean. And, full disclosure, I used to say things like this, too, so I know where it’s coming from. Unfortunately, or perhaps fortunately, I no longer have the luxury of pretending to be more useful than I actually am.

So, what should you say to someone who is hurting? There are plenty of options, actually.  A brief, heartfelt expression of sympathy is always appreciated. Something like this:

(1) “I’m so sorry this is happening to you.”
(2) “You don’t deserve this.”
(3) “This isn’t your fault.”
(4) “I think you’re handling this all very well, under the circumstances.”
(5) “How about a hug?”

If someone is sharing her story with you, it is not because she wants medical advice. It is because she wants you to hear her, and agree with her that it is very, very hard, and that she has every right to feel upset, angry, depressed, or whatever other emotion has overtaken her in that moment. And that is all. And that is enough, I promise.

Posted in Aspect I | Tagged , , , , | 13 Comments

fixed

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

First, I have a lot less pain today. A full day of rest and chair avoidance has presumably been good for me.

Second, I am not fixed.

fix |fiks|
verb [ with obj. ] fixes, fixing, fixed.
(1) to mend or repair, e.g. you should fix that shelf. (2) to be or to make something permanent or static in nature. also fixable |ˈfiksəbəl| adjective.

I was on the phone with a good friend yesterday who was dismayed to discover that I was [still] in so much pain, despite the “nerve thing” that was supposed to “fix all that.”

I rushed her through her sympathy so we could talk about something else.  As much pain as I was in, I was having enough trouble getting my mind off of it as it was, and I didn’t have any extra energy leftover to deal with her distress.  I’m finding myself more and more often in the unlikely position of having to comfort other people about the state of my own ill-health, and it’s exhausting.  While I appreciate that people need to feel that the length of time they spend sympathizing be in proportion to the gravity of the situation, what I really need is distraction.  What I don’t need is to have to reassure them that it’s not as bad as they think.

Because it’s not as bad as they think; it’s worse.  Not only am I not fixed, but I will not be fixed any time in the near future, and even the scope of what fixed entails has not yet been, if you will, fixed.  Cutting off the nerve supply made a positive difference in both my overall pain level and the tension under my shoulder blade, but it did not actually “fix” anything. My shoulder was hunched up in a fixed [sic] position for five months, causing lasting physical changes to not just the shoulder but the surrounding bones and tissues as well.  I will not be fixed until all of that is straightened out, or as straightened out as it can be, and moreover, I do not know how long that will take or how straightened I will be able to get.  Cue the dramatic music.

Luckily, today the pain is at a more manageable level, so I should be able to project enough normalcy to fly under my friends’ hypersensitive empathic radar.  Tomorrow… well, I can’t speak for tomorrow.   The white board gets completely erased every night, and what gets drawn on it the following day is unlikely to track with whatever happened the day before.  And as a result, being fixed is no longer the goal.  The goal is simply tomorrow, and perhaps the tomorrow after that.  The physical pain, in all its randomness, is still just pain.  It’s distracting, annoying, and often discouraging, but its very arbitrariness means that it’s not, shall we say, fixed at one particular level, and some days it’s little enough that I lose track of it if I get involved in something else.

What I can’t seem to escape is the sadness, the moments when I’m overwhelmed by the scope of the damage I’ve done to my physical frame.  I will never be able to be as unmindful of my body as I once was.  It is the loss of that invincibility, however illusory it may have been, and of the possibilities that are now closed to me because of that loss, that haunt me at night when my shoulder aches and sunrise is still hours away.  I’ve yet to find the peacefulness that comes from acceptance of one’s present place in life.  That, too, it seems, is a long way from being fixed.

Posted in Aspect I | Tagged , , | 1 Comment

destroyed

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

Today I woke up at four o’clock in the morning, stiff and hurting. After spending an hour failing to find a comfortable position, I got out of bed. Every muscle surrounding my vacant shoulder blade felt sore and bruised, and the unmistakeable burn of nerve pain traced the right side of my upper thoracic spine. What had I done now?  What happened yesterday?  Physical therapy, massage therapy, and I moved a large box from the floor to the bed so the cleaning service, which I have reluctantly hired to come in every two weeks, could vacuum the rug. Was that too much? I’ve given up trying to predict. My pain is capricious; it shows up, or not, irrespective of anything I have done, or haven’t done, or whether I did my stretches, or used the ice pack or the heating pad, or how much sleep I got last night or the night before that.

I start stretching my neck, turning my head to the side and tilting my chin towards my hip. The soft tissue that attaches my shoulder to my spine pulls back, tight and defiant. Wasn’t the nerve ablation supposed to fix that? The nerve couldn’t possibly be growing back already, could it? Fear brings adrenaline, and I know, even though I can’t feel it, that my muscles are tensing. I also know, even though I can’t control it, that the tension is not helpful.

I have a three-hour lecture course today, and I have no idea if I will make it through the whole class. So far, I’ve only had to leave early once, a couple of weeks before the nerve ablation. The erratic nature of my pain gleefully defies advance planning. Sometimes I think I couldn’t possibly sit for an hour and it turns out not to be so bad. Other days I feel loose and comfortable, but after sitting for twenty minutes I’m in so much pain I lose the ability to concentrate on anything else. What will happen today? I have no idea.

Yesterday, I began a new phase in my physical therapy. This was supposed to be good news; I have increased my mobility enough to start incorporating some strength-building exercises. I was instructed to get down on all fours and practice lifting my right hand, holding it up for two seconds, and then putting it down and doing the same with my left. I could do the right hand, no problem. But when I lifted my left hand off of the floor, my right shoulder and arm shook so badly the therapist had to brace my elbow to stabilize them. Last night, I was screamingly, sobbingly upset about it. Today, I am resigned and depressed, in that numb, whatdifferencedoesitmake sort of way.

I cannot believe that my right shoulder has grown so weak. My shoulder. My shoulder. I am a good swimmer – no, I am a great swimmer. I’ve never been athletic, it’s true, but I was graceful as a dolphin in the water, making barely a ripple as I swam lap after leisurely lap.  I had notable upper body strength, at least for a woman of my small stature; I used to be able to do twenty push-ups in a row. (Real push-ups, not the women’s version with your knees on the floor.) My flexed biceps were downright intimidating.

And now, my right shoulder is so weak it can barely support even a small fraction of my [reduced] body weight.

I used to feel, accurately or not, that I was a physically strong person. Now, along with so much else, it appears the injury has stolen that from me, too. I was hoping to be back in the water by the summer, but that goal has now been pushed so far into the future that I can’t even see it. I was supposed to take my niece with me into the ocean again, like last year, but it occurs to me that I may not be strong enough now to take care of her if something should happen. In fact, I don’t know if I will be strong enough to take care of myself in the ocean if something should happen.

After all that’s been taken from me, I had my heart set on getting back that one little piece, the swimming. It was almost within in my reach, and then, just as I was getting close, it was yanked away, like a twenty-dollar bill on a string. I’m left with nothing to cling to, no goal to work towards, no reward waiting for me at the end of this awful search. Doubt clings to me like saran wrap; I’m not sure if an end will ever come, or if I would recognize it if it arrived. And the anger… there is so much anger. I’m so sick of being constantly reminded that I don’t have any control – none whatsoever – over anything in my life. I can’t even keep my own apartment clean any more without help. Is it any wonder I’m resisting putting on weight? It’s the only thing I have left that’s still amenable to my influence. I may not be strong, but I am so freaking skinny that college girls are jealous of my thighs. So there. F*** you, God.

I had the audacity to think that maybe I could get one thing back, and I put all of my eggs in that basket, only to find out it had a great big hole in the bottom of it.  Even that small comfort, apparently, is denied me.  A couple of weeks ago my physical therapist said I might be able to try some of my normal activities again in six weeks. I had assumed, although she did not say, that that included swimming.  In light of my significant loss of muscle strength, however, that now seems naïve.

We don’t realize how important it is that we feel capable of doing a certain subset of  physical things. We are accustomed to a casual, defined amount of power, opening doors, pulling boxes off of shelves, helping lift a piece of furniture, catching a glass before it falls to the floor. I struggle to do all of these things now, and it makes me feel like a decorated Easter egg, pretty and colorful on the outside, but with everything that was on the inside blown out. It’s as though I might get dropped or stepped on at any moment, and then I will break apart and even the dubious usefulness of being pretty will be snatched away, too.

I almost wish I had done enough physical damage to carry around a permanent, visible defect because then I would know, and everyone else would know, exactly where things stand. But instead I have this frustratingly opaque injury with no timeline and no touchstones for recovery and I’m mad. I’m filled with so much fury that thick, acrid smoke should be pouring from my every orifice. I want to destroy something beautiful; I want to take a tire iron to a shiny new car and trash it, wreck all of those gleaming, perfect panels, shatter all the windows, pull off the mirrors, shred the tires with my teeth. I want God himself to come down and apologize to me for this wretched, mercurial burden that I have to carry every day, this goddamn invisible albatross slung over my right shoulder that claws at my spine. I’m like some Alice In Wonderland backwards version of the Emperor’s New Clothes. I can feel them, but no-one else can see them, and I suspect even my close friends occasionally doubt my descriptions of what it feels like inside my body.

I don’t have any provocative, spiritually reaffirming things to say about this one. I just hurt. I have a deep emotional pain at the pit of my stomach and it’s so powerful it’s almost physical, and I have no-one to show it to or share it with, standing here alone in my kitchen, with my laptop perched on the breakfast bar so I can type standing up because it still hurts too much to type when I’m sitting down. I’ve had to skew my whole life like that, adopt all of these unnatural, inside-out ways of doing things because natural things cause me pain. And I’m so tired of it.  I’m sick of being special. I don’t want exceptional treatment; I don’t want to need it. I just want to disappear back into normalcy again. And now, I have no idea when, or if, that will happen.

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