Wednesday, November 16, 2011

King of Pain: thoughts on how pain shapes who we think we are

Pain is different than I thought it was.

I guess I thought it was just–pain. Basic concept.You step on a tack, pain shoots through your foot, you remove the tack, the pain subsides gradually. Even the more serious stuff doesn't seem very deep, except maybe childbirth.

Over the first thirty-four years of my life, the most memorable occurrences of pain have winnowed down to these three foremost experiences:

  • I had a urinary tract infection at the age of sixteen that I so neglected that it went to my kidneys, and I ended up in the ER one night, on morphine for a kidney infection. It hurt in a way nothing, up to that point in my life, had ever hurt before.
  • When I was twenty, I threw a match into my gas oven twenty minutes after turning the gas on, resulting in a fireball that left me with first and second degree burns on my arms, thighs and face.
  • Over the course of eight years, I bore three children naturally and without painkillers, and the last of them unfortunately had to pass over a tailbone that had been made crooked by my middle child's having pressed his charming little fetal head there throughout my entire third trimester. (During that birth, which thankfully for everyone came last, I believe that I was actually pulling my hair and screaming that Mike should shoot me.) Luckily for me, that part was very brief, and then I ended up with a baby that some nurse was spraying down for twenty minutes with Lysol and a wire brush before we could have him. (And people wonder why I preferred my homebirth.)

All of these experiences felt like a test of courage, in some way. Intense, pulsing, consuming pain makes a worthy opponent. I especially remember the burn. At the time, I was about four years clean and sober, and I had often wondered if I would accept narcotic painkillers in the event that something happened to me.

It turned out to be a really stupid question.

When you feel like you are burning alive, which is what I thought I felt like, the option of turning down painkillers seems, really, like not an option at all. All thought of anything else aside, I was shrieking and begging for morphine and explaining that, due to my history of drug abuse, they were likely to need an increased dose of it in order to touch the pain. They kept giving me more and more morphine and Demerol and the pain kept not going away. Finally, after having lectured me that my screams were really upsetting the heart patients, they released me, still in great pain, but sufficiently exhausted and drugged that the pain felt somehow distant and I could sleep. (The next day, I flushed the contents of the bottle of Vicodin they sent home with me, just as soon as I felt merely miserable, and no longer as if I was constantly being licked by flames.)

Mike, Mikalh, and me (after the disinfection was concluded)
What all of these events had in common was that they were finite. They began and ended. They had a clear cause, and that cause could be addressed by medicine or by allowing nature to take its course. At some point fairly soon after they started, they were over, and the pain was all gone, or almost all gone, and I was the same person again.

In fact, in the special case of bearing children, I would say that I was actually a stronger person. I don't say much about it, because it it so personal and so fraught with issues of self-esteem, paternalism and choice, but I am an advocate of natural childbirth. The birth of my children, although painful, left me ultimately feeling powerful and at choice and taught me to know myself as a woman of more resource and fortitude than I had previously thought, which is exactly what I needed to know, as a twenty-two year-old near-child myself, to parent this tiny boy laid in an incubator beside me.

I could miss the clearly bounded confines of acute pain.This latest horrible bout of fibromyalgia agony that has grabbed hold of me, I find myself thinking that the kind of pain I find myself in these days is so very different from all of those. 

Finding words to describe it is like fumbling after something slippery, while wearing thick over-long gloves.  And yet somehow expressing it seems imperative.

Looking at life through chronic pain is like seeing everything through a carnival mirror. With work, I can still make out what is really there, but I am mentally exhausted from hour after hour of subtracting the distortion from pictures and trying to set them right. 

Pain starts defining everything, in spite of all my little measures to keep it at bay. At some point it just stops being "pain", in the way that "standing" is "standing" or "sitting" is "sitting". It starts to be Pain.

And it starts shadowing everything I do: walking up and down the hallways at work, pouring a cup of coffee, getting out of a bath. At any given moment, it is More Pain, Less Pain, Bearable Pain, Unbearable Pain, and I can choose to try and defer the presence of it still longer, allowing myself to continue functioning. But sometimes it becomes large enough that the deferral leaves me feeling like a zombie. 

The amount of work being focused at any given moment on not allowing that pain to form itself in my lips into a scream, or allowing it to let me collapse in public is starting to leave me feeling Empty, like a sort of carapace of human being.

And Life becomes this: doing things, completing tasks, laughing, watching TV, reading a book, loving my kids, doing my job, but all through a miasma of extreme discomfort, cascading through levels of tolerability from Almost Fine to I Think I'm Dying and back to the middle. 

This kind of Pain can start to change who you you think you are. My mother and husband have both looked at me in horror as I announced that I AM going to work today, although I can barely walk a straight line or stand up without holding onto a wall. But what would happen to me if I just stopped?

If I didn't show up for church?

If I quit my job? Or just didn't attend, day after pain-ridden day?

What would be left of Me, without the person that the kids at school call "Ms. Adams", the person who they expect to teach them and make them laugh, who they expect to be THERE and fully present?

How many people would remember to call or email me if I quit the church committee that I'm on? 

The Assembly Room at my church, where all the good stuff happens.
Here's what I have learned: I am who my community thinks I am. 

If I have to stay home with my Pain, I am afraid I won't end up being anyone but a reflection of that Pain and Doubt and Fear, all alone in my house, with no one to make me forget it, no one to need me or expect me to be there, at least for the hours school is in session.

So my worst fear right now is that I might be headed toward not being able to do my job. Monday I was asked to fill in on a duty, and I had to say that I just couldn't. I knew I couldn't stand for an hour. What will happen if I can't walk to classrooms to get kids? What will happen if I can't get up one morning? I should be able to get some kind of treatment and get better. But how long will that take? What if it doesn't work? 

What would happen if this was My Life?

I will only know the day that I cannot make my legs take me there because until that day I intend to try my damnedest to be the best of who the world thinks I am. If this is just a flare, I can outlast it as long as I hold onto all the important pieces of my life until it stops. So, meantime, please excuse my overly opinionated Facebook posts and my crazy knee socks and my rude humor.

I am going to remember who I really am. And, maybe Pain will bring me closer to who that really is.


  1. Tara, you are so good with words. Me, my mother, my Aunt we all suffer from chronic pain and fatigue. Like you said, it all becomes a measure of what level of pain your in that day. Hang in there. My Mom goes to work everyday for the same reasons. Because the other option seems worse then suffering the physical pain.

    Again, you are a very talented writer.

  2. Thanks, Lorien. It's funny. I never thought I would be that kind of a person. I thought I'd use an illness like this as the first excuse to quit my job-then I got the job as reading coach and I have invested so much time and care into it-I can't imagine leaving. Or who I would be without that sort of responsibility. What causes yours and your family's chronic pain and exhaustion?

  3. That's really the heart of it -- it's terrifying to think that Pain is all you will be, eventually, as it eats up everything else. And it's perfectly horrible, at that point, to have a good memory, because you can remember who you were and what you could do BEFORE. Your mind just shouts and shouts from the bottom of that deep well; and for a little while, your residual self-image (pardon my Matrix there) keeps making decisions for you, which leave your current self hurting worse out of stubbornness and fear that, if you aren't who you were, no one will want you anymore.

    It's really good and important that you said "no" to something. That way lies sanity. Another direction that has more sanity is by practicing compassion for yourself. I cannot recommend highly enough the books of Jon Kabat-Zinn: Wherever You Go, There You Are if you want the short version, Full Catastrophe Living when you're ready to go down the rabbit hole. The pain management program at the University of Minnesota is based on his mindfulness curriculum, and if there's an integrated program built like that in your area, I urge you to ask your doctor for a referral. For the first time in a long time, I'm not immediately afraid when my pain gets worse, and I don't feel like narcotics are my only hope of relief.

    In the meantime, feel my hugs.

  4. Thanks, I will have to look for those books and into that kind of pain management. I have been so focused on trying to find out what is wrong with me and whether or not I have Lupus, which it seems I don't that I have done very little work on managing pain. Still trying to imagine how much better I can feel if they get my meds adjusted right. I am now on a low dose of Lyrica now and Topomax for my migraines. Almost no narcotic pain relief, since I am clean and sober, so i live with a lot of pain.

    I love my job so much and feel I am doing so much good there, and I get so tired of feeling guilty for calling in sick, all for less than 10k a year that sometimes I want to bag the whole thing, no matter how much I love it. Time will tell. I appreciate the love (and advice.)

  5. I've never dealt with chronic pain myself, so thank you for sharing this and helping me to understand. Good thoughts headed your way.

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