[Me & My Naturopath] On Being Unfixable in a World Obsessed with Fixing

A few weeks ago, I took a detour from my naturopathy focus to go see my orthopedist. My right knee (which I still thought of as my “good” knee, because unlike the other knee, it has never needed surgery) had become very painful, and I wanted to see if there was an acute injury that was causing the pain.

There is no acute injury. There is, instead, a complete absence of cartilage. Bone is scraping against bone. No wonder it hurts.

As I talked to my orthopedist and his PA about my options, a phrase kept running through my mind. “This is not fixable. This cannot be fixed.” I realized I had been strangely hoping for an obvious injury, such as a meniscal tear, that could be fixed and therefore get my knee back to a less painful state.

But there’s no way to fix bone-on-bone arthritis other than a knee replacement. And for me, a knee replacement, while not completely out of the question, is not the best option. First, being several decades younger than most joint replacement patients, I am still caring for a young family and have a full-time working spouse, so the weeks and weeks of rehab that accompany joint replacement surgery are simply not feasible. But beyond that, my bone disorder would require a custom joint to accommodate my misshapen bones. Plus I still have rods in my tibias (shin bones) left from childhood surgeries, which would need to be removed before I could get a new knee—not a simple prospect, because at either end of a tibia there is an enclosed joint that makes removing a rod from one end or the other very difficult.

With knee replacement out of the picture, at least for now, all we can do is try to lessen my knee pain, rather than eliminate it. I got a cortisone shot that day, and will return next week to begin a series of hyaluronic acid injections (what my orthopedist calls a “lube job,” whereby animal-derived cartilage cells are directly injected into the joint). I expect this to help, but it won’t fix my problem, which is a knee that is plum worn out.

I am also continuing to experiment with naturopathic remedies. For about six weeks, I have been doing weekly acupuncture, and weekly or twice weekly yoga classes. I am also following an anti-inflammatory diet most of the time, and taking supplements, from a multivitamin and specific nutrients that a lab analysis showed deficiencies in, to a protein said to help build bone and cartilage.

Is all of this helping? It is hard to say. Sometimes I think it is. My decision to do most of the garden mulching myself this year, for example, surprised me. For the past couple of years, I have felt unable to take on such a physical job, and have left it to my husband. That I both wanted to do this job and was able to do about sixty percent of it without his help indicates improved energy and a less prohibitive amount of pain. But all that mulching left me pretty sore, and beyond that, I still have very sore days unrelated to physical exertion, when everything hurts and the best remedy is either sitting in the warm sun for a good while (our very chilly New England spring has made that difficult) or taking a nearly-scalding bath. (I am extremely clean these days.) And while I sense that my naturopath would love for me to eventually stop taking opioid pain meds (which is appealing to me as well—no more feeling personally indicted by ignorant news stories and overzealous pharmacists), those meds still provide a level of obvious relief that diet, exercise, and acupuncture have yet to rival.

But even that relief is incomplete. The fact remains that the mechanisms behind my pain—the worn-out joints, bone deformities, scoliosis, loose connective tissues—are not fixable.

Even this standard yoga position? Ouch. I manage with blankets and blocks to get into something resembling this position. Sometimes.

While I have been largely pleased with the naturopathy practitioners I’ve consulted, particularly my doctor, I also sense an underlying faith among many of them (particularly yoga teachers and nutrition counselors, who are sometimes one and the same) that all things are fixable if one commits to the right diet, the right mindset, the right yoga practice. I’ve come across numerous web sites whereby practitioners promise that changing your diet and lifestyle will leave you feeling “amazing!” The yoga teachers at the studio I attend talk frequently of their own experience with injuries or recovery from eating disorders or addictions, yet still seem unable to comprehend the notion of a body that hurts, all the time, no matter what. For example, during one class my Intro to Yoga teacher (whose attitude and philosophy I really like for the most part) said, “If you are feeling your knees at all as you do these poses, let me know. You shouldn’t feel your knees.” After class, I told her, “I always feel my knees. I feel my knees when I’m sitting still, when I’m lying in bed.” I’ve since learned how to use props to lessen knee discomfort, and I also avoid certain poses altogether. But I still feel my knees during yoga, and always.

My knees are not fixable, not through medication or surgery or yoga or diet or acupuncture. I can do a lot to maintain my health and energy and lessen the effects of my messed-up skeleton, but I can’t fix it. None of this makes the pain go away.

We live in a culture obsessed with fixing ourselves (and sometimes other people too). We like to tell stories of people overcoming obstacles. But for me, all this talk of fixing and overcoming leaves me feeling left out and less than, because I cannot be fixed. I wonder if, instead of all this talk of triumphing over our circumstances, we’d do better to talk about how to live well within our circumstances. Andrew Solomon, in his extraordinary book Far From the Tree, writes that “Resilience is the contemporary gloss on what used to be thought of as perseverence.” I wonder if, despite much talk of and research into what makes people in difficult circumstances resilient, our culture has lost appreciation for old-fashioned perseverence—enduring through difficulty, which does not necessarily mean thriving through or overcoming difficulty.

Theologian Stanley Hauerwas, in his book God, Medicine, and Suffering, quotes Nicholas Wolsterstorff, author of Lament for a Son—a memoir of losing his grown son in a mountain climbing accident and a meditation on parental grief. Wolsterstorff says,

I know now about helplessness—of what to do when there is nothing to do. I have learned coping. We live in a time and place where, over and over, when confronted with something unpleasant we pursue not coping but overcoming. Often we succeed. Most of humanity has not enjoyed and does not enjoy such luxury.

For me, there is not yet “nothing to do.” I am doing everything within my physical power (and finances—naturopathic interventions are pricey and generally not covered by insurance) to lessen my pain and disability. But I’m also very aware of all that is unfixable about me. I am aware of some measure of helplessness in the face of bare physical facts about my body. I manage very well, but I rarely, if ever, feel “amazing!”

So even as I pursue diet and injections and yoga and acupuncture, I am also striving to learn the lost art of coping.

 

About Ellen Painter Dollar

Ellen Painter Dollar is a writer focusing on faith, parenting, family, disability, and ethics. She is the author of No Easy Choice: A Story of Disability, Faith, and Parenthood in an Age of Advanced Reproduction (Westminster John Knox, 2012). Visit her web site at http://ellenpainterdollar.com for more on her writing and speaking, and to sign up for a (very) occasional email newsletter.

  • DaveP

    > I am also striving to learn the lost art of coping.

    “Coping: A lost art?”
    https://groups.google.com/forum/?fromgroups#!topic/alt.home.repair/37m7r9NwVc0

    More info: “Coping” http://en.wikipedia.org/wiki/Coping_(joinery)

    :)

  • DaveP

    > But there’s no way to fix bone-on-bone arthritis other than a knee replacement.

    I just stumbled across another way. And coincidentally, the top company for doing it is in Connecticut (South Windsor); Oxford Performance Materials (OPM): http://www.oxfordpm.com/ . It’s so new that your osteopath might not have heard of it yet — the first use of the technology was last month.

    Instead of a knee replacement, and a custom joint, and removing the rods from your shin bones, and physical therapy, etc …

    … how about replacing the whole bone all at once with an exact duplicate? A scan to get the exact shape of your bone, print a duplicate in 3D using PEKK biomedical polymer, remove the old bone, and put in the new one.

    Maybe that could be a “cure” for OI? If they could print an exact duplicate, why not print an “upgraded” model? :)

    As a test of the technology, last month OPM did something incredible. They replaced 75% of a guy’s skull with a 3D printed duplicate. I would think that a shin is easier than a skull.

    OPM said that they are starting with skulls and moving bone-by-bone through the rest of the body (next on the list is apparently femurs), so …

    … maybe they’d like to have a guinea pig in Connecticut to test those replacement bones on? :)

    “3D-printed implant replaces 75 percent of patient’s skull”
    http://news.cnet.com/8301-17938_105-57573305-1/3d-printed-implant-replaces-75-percent-of-patients-skull/

    “Earlier this week, 75 percent of an American patient’s skull was surgically replaced with a custom-made implant produced by a 3D printer from Oxford Performance Materials.

    The implant is made from PEKK biomedical polymer and printed using CAD files developed to fit each person. The world of skulls is not one-size-fits-all. Much like an expensive pair of bespoke shoes, these skull implants are unique to the individual.

    “It is our firm belief that the combination of PEKK and Additive Manufacturing (our OsteoFab technology) is a highly transformative and disruptive technology platform that will substantially impact all sectors of the orthopedic industry,” said Scott DeFelice, President and CEO of Oxford Performance Materials.

    The company is starting with skulls, but plans to move through the body, creating more implant options. The skull success could be just a precursor to other bones like femurs, knee caps, and hips.

    The PEKK polymer has the big advantage of being biomechanically similar to bone. The skull implant was just approved by the FDA last month.”

  • http://Www.kewp.blogspot.com Katherine Willis Pershey

    As always, I so appreciate your honesty and wisdom. I need to relearn this lost art, too, for a few unfixable things in my own life.

  • Jessica

    “This is not fixable. This cannot be fixed.” I realized I had been strangely hoping for an obvious injury, such as a meniscal tear, that could be fixed and therefore get my knee back to a less painful state.

    Yes. I’m enduring something now–not physical–that I’m having to face will not be remedied, only endured. I find myself wanting something to be really wrong, so that I won’t have to confront the mystery of this every day. I find I’m fighting mad, all the time. Thank you for this thoughtful post. I will look up the Hauerwas book.

  • http://twitter.com/Rachel_M_Stone Rachel Marie Stone

    The quotation from Wolterstorff via Hauerwas reminds me a lot of some of the ideas in Paul Brand and Philip Yancey’s book ‘The Gift of Pain.’ I think you might find a lot of that book pretty frustrating since the idea of abnormally caused pain (such as that from OI) doesn’t really enter into it much–the focus is more on how disorders that cause an unnatural absence of pain actually destroy people’s body, ie, Hansen’s disease–but it has some excellent thoughts on that “lost art of coping” and how American culture doesn’t really help us do that much. I definitely pop Advil when I’m aching, but since reading that book I sort of try to do it mindfully rather than mindlessly, if that makes sense. For example, I’ll drink some water and sit quietly/meditatively for a bit to see if that helps, or drink water and try to distract myself, and if the pain is still intruding, I pop a pill or two without a second thought.

  • Pingback: On Faking It, Pharmaceuticals, and Whistleblowing | Rachel Marie Stone

  • Y. A. Warren

    Absolutely amazing! My husband, a retired neurologist, said to me many years ago, that unlike other animals, we have fight, flight, and cope as our responses to stress. How brilliant that you both understand that.

    My husband also said that, in his pain management practice, he realized that an added burden of pain is that many people take it personally. I know that many religions teach pain as punishment, as did the religion into which I was born. My husband’s words really resonate with my spirit.

    In every disease (my husband’s definition: that which causes un-ease), from emotional and mental to the most crippling physical, there are people who see themselves as arbiters of the “normal.” All of us need partners in our pain, not people who are obviously inconvenienced by their awareness of our suffering, as if we are somehow inconveniencing their perceptions of human perfection.

    Blessings to you and your committed community of responsible compassion.

    • http://ellenpainterdollar.com/ Ellen Painter Dollar

      It sounds like your husband is my kind of doctor. I love when physicians are skilled at seeing the whole person and understanding what’s happening in addition to symptoms. Thanks for reading.

      • Y. A. Warren

        My husband was much-maligned because he took too long with each patient. We are so blessed that her became disabled 13 years ago by the need for a heart transplant. I am so blessed that he shares himself with me and many others for free.

  • http://birdybegins.wordpress.com/ Eleanorjane

    Great post! It’s something that we really, really don’t want to accept in today’s society I think, that we can’t fix everything with modern medicine so we can suffer and and also that we all eventually die.

    I kind of like the old practice of keeping a momento mori featuring a skull to remind yourself that we all die. Also, the Ash Wednesday liturgy of “Remember Man that you are dust and unto dust you shall return”. It seems like a counter to the youth obsessed stuff we get fed.

  • Sara Whipple

    Wow!

    I’m amazed by your resilience. I recently ran across a video – for a PE class of all things – it mentioned that certain things transfer the work to either the joints or the muscles – locking the joint always seems to put the stress on the joint…I thought this might be useful for you…then again maybe not at all I have no idea, but wish you the best. Not a fix certainly but perhaps part of a workaround?


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