Cut the Sunshine

March 5, 2010 at 5:33 pm (Uncategorized)

Today I am doing battle with my inner chirpies. These interior voices are really much meaner than their innocent and fluffy-sounding name suggests.

As usual, the chirpies began the day with non-stop chatter.

Look, the sun is shining. Enough lazing in bed after chemo. It’s time to be up and at ‘em. You’ll feel better after a shower. Make your bed; that way you won’t want to crawl back into it. You got chemo three whole days ago. You’ve had plenty of time to rest and recover. Now it’s time to start living and working. Get up. Get up. Get up.

I named the chirpies for their bright, bird-like utterances. I have never caught sight of one, but I picture them as winged and feathered. They have sharp talons and beaks that have pecked me. Their cheerful voices can grow loud and shrill enough to break glass– or my will. I envision them as akin to Homer’s Harpies—sinister amalgamations of woman and bird. Dante certainly knew better than to discount the Harpies as fluffy novelties. In the Inferno, he populates the realm of Hell where suicides are sent for all eternity with Harpies.

With dire announcements of the coming woe.
They have broad wings, a human neck and face,

Clawed feet and swollen, feathered bellies; they caw
Their lamentations in the eerie trees

Unlike these gloomy bird brains of mythology, my chirpies have served me well in the past. Over a decade ago, I suffered from severe depression. Left to my own devices, I would have spent years in bed because I was too paralyzed, too frightened, and too demoralized to scramble out from under the covers and go to class, or work, or a party, or wherever I would find human contact and the pride of accomplishing a task. Back then, listening to the chirpies order me out of the house actually helped me. Their bright chatter taught me that doing is often more important than being. Rather than languish in a therapist’s chair dissecting the nervous fibers of my unhappiness, it was easier and more effective to heed the chirpies’ commands and dash out of bed, quash the voices in my head telling me I was too tired, too sad, and too unprepared. Once I started listening to the chirpies instead of my dour psychologist, I graduated from U.C. Berkeley, married Jay, launched a successful (and sometimes even lucrative) career as a writer, moved first to Montana and then to Palau and eventually back to Montana again, and gave birth to a healthy baby boy. Using the language of Gretchen Rubin’s The Happiness Project, I had opted to “act the way I wanted to feel,” rather than try to fix how I felt. It worked.

And then I got sick. When I first got diagnosed with sarcoidosis, I felt like I had dodged the proverbial bullet. Initially, my doctors had thought I might have lymphoma, so when I returned to consciousness after the biopsy and learned that I didn’t have cancer but instead this weird-sounding auto-immune disease, I was happy. I became even happier when I conducted some cursory on-line research and learned that nearly seventy percent of sarcoidosis cases spontaneously remit. In other words, for more than two-thirds of the people who get sarcoidosis, the disease just goes away—without treatment, worry, or fuss. Naturally, the chirpies thought this was my future.

But when I tried to jump back into my normal life, I didn’t feel quite right. I awoke in the middle of the night, unable to find oxygen even while my heart hammered at twice its normal rate in my chest. I lost feeling in my left foot and left hand. The chirpies told me to stop being a hypochondriac and to get on with raising my kid, living my life, and loving my husband. However, my Montana doctors obviously didn’t have a direct line to the chirpies’ suggestions, because instead of ordering me to buck up and stop complaining, the doctors sent me to see sarcoidosis specialists in Denver, where I was diagnosed with cardiac sarcoidosis. Since then, I have watched the disease move from organ to organ like a real estate mogul devouring beach-front property. There goes the liver, and the spleen, now it’s taking the brain and the bones. I learned on Tuesday that I have a new sarcoidosis lesion on my pelvic bone.

Throughout it all—the trips to medical centers in Denver, New York, Philadelphia and Cincinnati; the inevitable progression of simpler treatments yielding to more toxic and desperate combinations; my son’s sadness at seeing his mother sick; Jay’s worry about me and anger that he can’t fix me—the chirpies haven’t changed their cheerful-sounding and forceful message, which they deliver in bright and bold voices. Get up; get with it; stop lollygagging; get with the program; stop feeling sorry for yourself; lots of people have it much worse than you; you’d feel better if you just got your fat ass out of bed.

For the most part, following the chirpies’ song—or some version of it—can work well, as long as you don’t have a severe health problem. I know many people, including my own husband, who deal with adversity by putting one foot in front of the other and not looking up to take in the shape and shadow of their challenge. I respect this strategy. It helped me for many years. Busyness was better than gloom. Productivity beat the hell out of ennui.

But the chirpies have no mercy. They don’t seem to recognize the difference between being physically ill as an after-effect of getting chemo and merely hanging out in bed because I don’t feel like facing the day. The chirpies are stern task-masters. They demand to know how many days chemo really demands for recovery; they wonder if my vertigo is actually as bad as I think; they nag constantly that my head pain would feel much better if I was more active. I’ve tried explaining to the chirpies that when I’m lost in the sea of pain in my head, I can’t really do anything except hide from the light and wait for the worst of it to pass. Nonsense, the chirpies retort. Nothing is so bad that a hot shower, a cup of coffee, and some exercise can’t fix it.

I’ve only recently begun to pay attention to my inner voices. Incidentally, I am not schizophrenic or suffering from multiple personality disorder (as far as I know). Rather, like the rest of humanity, I have internal voices that steer me toward certain decisions, contribute to how I feel, and give me guidance. But my chirpies have taken the helm in recent months. They have chirped, clucked, and shouted out calmer thoughts. I was shocked when I started to tease out the chirpies’ constant badgering. I discovered that I subjected myself to a barrage of self-loathing. My problem was no longer that I needed to get up and at ‘em—that working on an essay, going to the gym, or carrying out an art project with Andrew—would make me better. My sickness was bigger and badder than anything the chirpies had previously encountered. But that doesn’t stop them from issuing fluting commands to stop complaining, get busy, get out of bed, get with the program.

This afternoon, I gave in to the chirpies’ commands. I should feel better from chemo by now, I agreed, and forced myself into the shower. Of course, I actually didn’t feel better from the chemo. I nearly threw up, felt woozy standing underneath the water, and couldn’t stop shaking until I was back in bed. No matter what the chirpies say, chemo continues to make me feel lousy for at least three days.

One of the most difficult aspects of living in Chronic Town is having to discard old ways of dealing with problems. The chirpies are a fine example. Prodding myself to be and to act functional was once a viable way to steer clear of depression and to embrace the life I had. But everything is different in Chronic Town. The chirpies aren’t helping me in this new world. They are wearing me down. Instead of motivating myself, I use these voices to hurl insults at myself for not being well.

I wonder if and how the chirpies might fit into my life in Chronic Town. I don’t want to relinquish the inner sense of action and accomplishment embodied by the chirpies. But I also can’t go on listening to the litany of my wrongs when I’m legitimately stuck in bed. The refrain of fat, lazy, and malingering isn’t helping me at all. It’s just another burden to overcome.

How have you dealt with managing inner expectations? Is there a way I can teach my chirpies to be kinder and more considerate about the difficulties of living with a chronic illness? Can I teach myself to be better to myself—to offer words of hope without insult? Or do I need to set the chirpies free from their gilded cages and let them fly away from me into the sky?

7 Comments

  1. Barb said,

    Oh wow, you describe my committee perfectly only they don’t chirp, they just go straight to shaming and can’t do it messages. Just as I was waiting for the comment box to load I remembered a phrase I use in parenting when a demand is made that is not courteous and does not leave room for discussion, I say ” I don’t respond to that tone of voice, please try again”. Maybe That would help. You’ve inspired me, I think I’ll try it myself. And isn’t a chirpie some kind of British term for a loose woman? THAT makes me laugh.

    • Rebecca Stanfel said,

      Hi Barb,

      I’m going to try your great line, with one minor addition: “I don’t respond to that tone of voice or a personal attack. Please try it again.” Maybe the chirpies will respond as well as Andrew does when I ask him for a tone fix (he does pretty well).

      I’ll have to look up the “loose woman” link. If it’s true, I could talk back to my inner voices and join in the name calling: “Quiet, you who*@%” Although maybe shaming them doesn’t set a good example?

      As always, thanks for reading, commenting, and making me laugh.

      xoxx
      Rebecca

  2. Nancy said,

    My dear husband/friend Bruce, of 34 years has taught me so much about patience and perserverance – has continued to work, take over many additional aspects of our lives and left for work with me sleeping, to come home finding me sleeping…for years now. There have been many changes, and the only thing I have heard him express as a chirpie has been…I wish that you could just suck it up, put one foot ahead of the other and with this effort, the day will get better. Me too. N

    • Rebecca Stanfel said,

      Hi Nan,

      Oh, I know how you feel. I think many aspects of our lives are almost interchangeable they are so similar. I’ve done the sleeping through Jay’s whole work day, too. And I have also watched Jay have to take over more and more of tasks to run a household that we once shared. It’s depressing. I know it’s hard on him, and he’s exhausted too. Jay is like Bruce in that he’s almost always extravagantly kind about how tired he is, how different his life (and our lives) are than he expected, and how little sympathy he gets for the disease (it is almost as hard on Jay and Andrew as it is on me, but I’m the “patient” so I get all the sympathy). I also know how one remark like the “suck it up” one from him can keep twisting and turning in my head and heart like some sort of hollow-point bullet lodged in there. Wouldn’t we all in Chronic Town like to have our getting up be a matter of will? Yes, the day would be better if we could be awake to make something of it…Like I said, sarcoidosis makes life hard on the whole family–especially our partners. Thanks for writing and sharing this story.

      Sending you healing thoughts,
      Rebecca

  3. The Trough « Chronic Town said,

    […] I don’t listen to my inner barrage of self-loathing and over-expectation. But I still give these chirpies too much time and volume in my head. Listening to the soundtrack of “you’re fat, lazy, and […]

  4. Patricia said,

    Thanks so much for the term. Chirpies. Makes it seem like something we can manage.

    I’ve got a lot of the self-loathing, self-defeating style chirpies, the kind that don’t serve anymore. Through conscious listening, I’ve identified some of them, explicitly (ie, the chirpie that says you shouldn’t complain, or the chirpie that says This good thing is for other people, not you) and that has helped me I become more adept at nipping them in the bud more quickly , so that instead of listening and giving it credence I can simply say, “Oh, there it is again, trying to feed me another load of crap.” Helps save on time, if nothing more. But like anything, it takes practice. And then a crisis comes along and seems to throw all the practice out the window…chirpies chirping like made, taking over the joint …

    And the powering through thing is a constant choice, eh? Even on good days you must pause and wonder: Should I attempt this? as well as the converse: Am I being too cautious?

    • Rebecca Stanfel said,

      Dear Patricia,

      Thanks for your insights on managing the inner voices of critique and self-loathing. You have put into words many nebulous thoughts I’ve been struggling to define for myself. You are so right that the key is listening for them. It’s amazing how many years I spent using my powers of self-examination NOT to keep examining and picking at myself but to instead be gently self-aware to the sountdrack in my skull. I can definitely look inward–but I was always looking inward to find more wrongs, more ways to improve, more things about myself to change. But, like you, I am beginning to be able to hear the chirpies’ familiar refrains before they get going and can do some real damage. Also, like you, it’s easy to forget to listen and then almost go on a self-loathing binge when I’m in the midst of some sort of crisis.

      You balancing test on the powering through question is a good one. I have typically erred on the overdoing it side and am finally beginning to learn to ask myself on a daily basis (actually dozens of times a day), should I attempt this. But, I don’t want to lose my innate capacity to take risks sometimes and to push myself. Years of sickness can leave me with narrow vision and a lot of fear. It is good to ask myself if I’m being too cautious, as well.

      Thanks for reading.

      Thinking of you and sending you good wishes,
      Rebecca

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s

%d bloggers like this: