It’s All in Your Head
Frida Kahlo: The Broken Column
I recently encountered something perhaps as frightening as mortality: chronic pain. A routine dental procedure transmuted into facial neuralgia. Without qualms, I have undergone shoulder arthroscopy, two ear stapedectomies, the setting of broken fingers, several root canals, tooth extractions. With relative equanimity, I have borne the pain from two herniated discs, watched my once-perfect eyesight fade, my hearing fail in one ear. But the effect of long-term nerve pain cannot be adequately described. It crushes your spirit, pulverizes your morale and takes you over like the larvae in the Alien films. When a paroxysm occurs, thoughts and emotions collapse into a black hole of animal fear. People with chronic neuralgia lose jobs and partners, go mad, kill themselves. Yet the condition is invisible to any medical test yet devised.
This affliction, which is still plaguing me and may or may not get cured, gave me a tremendous amount of admiration (and visceral understanding) for those who deal with chronic disease: the diabetics who must endlessly prick themselves and measure each bite they consume, the sufferers of MS and ALS who slowly but inexorably lose control of their limbs. It also brought home the realization that, our accumulating wisdom and experience notwithstanding, we are still biologically wired to expire in our thirties, as soon as we’re past our reproductive peak. Lingering beyond that ushers in the lengthening list of deficits that make us increasingly uncomfortable squatters in our own bodies.
The ordeal also made me aware how crude our tools still are for managing neuropathic pain. The drugs used to ameliorate it have such disturbing side effects that I have repeatedly considered going the cold turkey route. Like chemotherapy reagents, they are blunt hammers: they affect all nerve functions, from the sublime (the ability to concentrate) to the mundane (random aches and itches). The only other path to therapy, if it can be called that, is surgical or chemical deadening of the affected nerve, which is not guaranteed to stop the pain – but which leaves the nerve’s territory irreversibly numb.
The enthusiasm for neural interfaces is a staple of the transhumanist community and of science fiction. Our current knowledge of the crucial details of the central nervous system leaves us far short of such a goal. It is true that today’s neuroprosthetics and retinal and cochlear implants allow some semblance of function – but the emphasis must be laid on “semblance”. Virtually helpless against the relatively pedestrian and common phenomenon of chronic neuropathic pain, we are a long way from Johnny Mnemonic’s augmented hippocampal capacity, let alone the seamless integration with either computer circuits or starship control consoles so beloved of cyberpunk.
Chronic pain, unlike its acute counterpart, has no protective function. It is truly an aberration, a system error. I’m trying to figure out how to turn my own intruder into a guest, however unwelcome. If I can learn to live with it, I may be able to tuck the rest of my life around it until it disappears from view, like the irritating grain in an oyster that eventually creates a pearl.
I stumbled by here by following a comment you left at http://www.centauri-dreams.org/?p=1389, lead there by a link from a quasar9 blog entry I found making rounds from my blogspot.com perch… reading your comment, this entry, and starting into the previous entry, I am admiring your mind, or at least your thought process… I felt I should tell you before I nodded off (it’s late) and let this moment pass… I hope to read more in time… and I hope you find the knowledge you seek to create your pearl…
Thank you for the kind words, Ric, and welcome.
I was pointed in your direction by Ric, who found you via Quasar, and it somehow feels so right to come to read your words. I love your writing and your thoughts expressed in this post, so beautifully written. After a 20-year “career” of chronic pain, I read your words and it brings to mind my pain (something I don’t think so much about any more), something that is fairly constantly with me with short durations of “remission”, and interestingly it has also necessarily meant what I would consider to be just as professional an MD as an MD possesses, maybe even more so given the education that pain creates on this side of the exam table. As I recall my entry into its world so many years ago, I am reminded of the many stages traversed through the journey, and hearing you speak about pain it reminds me of those stages. It is not a simple road by any means, but I can say for me there have been many pearls created along the way…only, however, when the heart and mind have been open and receptive to the pearl, patiently waiting for its formation, and not falling into the easier pit of focusing solely on the sand.
Thank you for your writing and your sharing and your thoughts, so eloquently expressed. I do hope for relief for you, in any form that may take.
Thank you for sharing your own experience, Serenity, and for your good words. If my own condition remains, I can only wish for your fortitude.
I wanted to come back, because as I thought about my comment, it seemed sort of incomplete. But then, as you say, pain is very messy..and in one comment it is really quite impossible to convey everything that it means to someone’s life. Fortitude I have discovered is something rather forced upon you, I suppose, rather than anything terribly heroic. Living goes on and continues, and pain eventually finds its place within your life the more time that goes by. Hopefully though, your pain will be short lived. We all of us continue to hope for that.
It can also be a journey of learning, not only about yourself, but about others as well, and their discomfort with your pain. People don’t know how to act or what to say, and will often even start avoiding you. On one particularly bad night, I wrote this post, http://serenitytide.blogspot.com/2007/06/it-just-fucking-hurts.html, and found myself facing the realization that I was all alone in that pain, no one could come into it with me….and no one attempted to. The writing isn’t anything to write home about…I was in the middle of the storm, and I have never posted a link to a post I have written in a comment before, but it just seemed like something I wanted to share with you.
Serenity, I read your entry and it is exactly as you describe it. In my case, I try to adhere to the stoic mode, being an atheist. But philosophical stances dissolve when the pain spikes: the body’s fight-or-flight reflex automatically takes over and thinking reverts to basics. First abject fear; then the kind of anger that leads to the determination not to let the incubus rule your life.
Athena,
Philosophical stances dissolve indeed, as Maslow described in his hierarchy of needs, pain tends to reduce us down to something very basic, not really caring much about those issues higher up on the ladder toward self actualization. Pain doesn’t care if we are atheist, Christian, Muslim or Buddhist. We are merely human.
By way of connotation alone, one can only begin to imagine the grueling trial of dealing with chronic pain, whatever condition it may stem from. The essay you’ve shared here truly opens one’s eyes to the excruciating reality and offers a glimpse at the sheer fortitude required in dealing with such hardship. Your strength is highly admirable, and once more, I extend my own wish that you see a return to full health and find that pearl within the oyster.
Many thanks for your words and wishes, dear Heather. If this becomes truly permanent, I will have to adjust to it, just like any irreversible condition. That will require the greatest strength. But having good friends around acts as both a welcome diversion and a true balm.
I was struck–aside of course from the grinding difficulty of chronic pain–by the observation of the gulf between SF/transhumanist/cyberpunk notions of humans “jacking in” to computers through direct neural interfaces, and the reality that our mastery of nervous systems is so poor that we can’t even control chronic pain except with a narcotic sledgehammer. I am a huge fan of science, technology, and science fiction, but often the distance between our dreams and reality is overlooked–witness space travel, fusion power, artificial intelligence/androids, and so on. The reality of chronic neuralgia that cannot be fixed, only bluntly “managed,” is particularly human and touching, and sobering. We may dream of the stars, but we have bodies of clay.
Dear Calvin, I completely agree with the points you raised. I, too, have woven dream tapestries about humans venturing into space, or extending their physical abilities – whether by prosthetics, genetic engineering or inevitable adaptive evolution.
But like NASA and the transhumanists (to name only two of the most recent dualist sects), we ignore and demean the body at our peril. It’s not the passive container of our mind; it is its major shaper and inseparable partner.
The painting you posted by Frida Kaloh is apropo to any discussion of pain. The woman endured many years of tormant and died cursing her own body. I believe she even requested it be cremated, which was considered rather shocking to her largely Roman Catholic community.
Your writing is very eloquent as always.
Thank you, Kathryn! When I was writing this, I was thinking of three people who kept doggedly creating in defiance of overwhelming odds. Frida Kahlo was one, and her raw paintings bear powerful witness to both the pain and her unrelenting struggle against it.
Another was Isak Dinesen (Karen Blixen), who had to dictate many of her stories while racked by the awful pains brought on by advanced syphilis. In her case, it was a point of pride that the work appear effortless, that the pain not be heard even as a whisper.
Last but not least, there is Stephen Hawking, who is still spinning off theories and going up in airplanes, as long as he has breath left. This strength shames me. But in the end, we are isolated in our bodies, and never more so than when they decide to act against our conscious will.
Athena,
All I can say is that I am with you every step of the way.
I suffer from migraines myself, so incapacitating pain is something I know very well. I have learned with time to deal with it, as it were, and by now I have discovered a modus operandi to make the migraines be as small an inconvenience as possible.
Still, there often comes a time when I cannot do anything other than lie down and let the storm pass. In such a case, atheist that I am, I would dearly like that there would be a God somewhere I could curse for this unstoppable weakness. The feeling of being utterly powerless against the tide is not something I wish on even my worst enemy.
And recently, I had to face a inflamation of the sciatic nerve. Actions that were utterly mundane were suddenly beyond my reach. I did a lot of physiotherapy, which helped some, as I regained a measure of mobility, but I still need to do a lot of stretching before I can ever feel cured. Some activities I enjoyed will now be on the black list. It is a small price to pay, but it doesn’t mean I have to like it.
Chronic pain is, I think, much more common than we imagine. And one of the less-known fields of research. Though one has to suppose there would be billions to be made if the pharmaceutical companies put their mind to it. A properly aimed medicine woul mean a higher overall efficiency at the end, instead of all those nasty side-effects…
Fondly,
Bretonlass 🙂