Wednesday, August 31, 2011

A Special Thinking Dog Perspective

My Struggle To Escape the Bondage of Health Care

1. Health Care Corners Me

Those who know me well, or who have read my essay, “Always Safe, Always at Home,” are aware of my shameless boast that, sick or well, I never employed a medical doctor between 1974 and 2008.

But, as I describe in that essay (published as a pamphlet in 2009), one afternoon in early May, 2008, I began having persistent chest pains, and after 34 years of avoiding doctors I finally turned myself in at the emergency ward of Depaul Medical Center, the hospital nearest to where Jala and I live in Norfolk, VA.

Since that day I have seen more doctors than I can remember, beginning with a cardiologist who unsuccessfully treated my heart condition for over two months until he recommended surgery. In a six-hour operation on July 23, 2008, a skillful surgeon replaced my mitral valve, a fairly serious though not uncommon operation.

Suddenly, from no medical history at all, I had a file folder of records over an inch thick. I was now in the health-care system. After I got out of Norfolk Heart Hospital and was released a few weeks later from home health care, I had appointments to see doctors or show up at labs for tests two and three days a week. It wasn’t just my heart, either. Blood pressure, cholesterol, thyroid, lungs, colon, prostate—the docs wanted to look at all of it; and, invariably finding deficits, prescribed many more medications than I had ever in my life planned to take.

I didn’t like what was happening to me. My life had become centered around being a patient. I didn’t want to see myself as a patient. I wanted to release myself from the medical system which defined me as one. Besides that, even though I now had Medicare, co-pays had eaten up half my savings. Yet my medical bills kept coming, as did my uninsured prescription refills. And, of course, my rent.

I willed myself back to normal (or near-normal), and over the course of 2009 and into 2010 my test results improved to where I only had to visit a doctor every three or four months. My medications had been pared down to a minimum, the doses leveled off for mainentance rather than rescue. I was slowly weaning myself from xanax, which put my anxious mind to sleep each night.

But then, in early Oct., 2010, I fell from a stool in our bedroom and broke my hip.

What a bummer! There was no way out, I obviously had to go back to the hospital. One more time Jala drove me to the ER at Depaul Medical Center, where an X-ray confirmed the worst. The thigh bone (femur) had snapped off just below the ball joint of the hip—a clean break.

The diagnosing doctor, a pleasant, reassuring woman, contacted an orthopedic surgeon, who soon appeared by my litter. After a brief discussion with me he arranged for a surgery at noon the next day, a Sunday, when he would replace half my hip with a ball attached to a spike hammered down five or six inches into my femur. The next day, Monday, I stood and, with assistance, took a few steps from my bed. By Tuesday evening I was home from the hospital—disoriented, medicated, and supported by a walker (supplied through Medicare).

A part of me can only marvel at the speed of that repair and discharge. An injury that only a few decades ago was deadly serious is now a routine replacement which had me back on my feet, though barely mobile, in a matter of days.

But another part of me felt rushed. Obviously, I needed a doctor to fix my hip. And I was glad enough to get out of the hospital so soon. But the physical and psychological trauma seemed severe. Was this really going to be okay? Would I be able to move again as I always had? How long would it take?

If I “work really hard,” the orthopedist said, I should be back to my normal life in three months and be fully recovered in six. I understood him to mean I would have to push myself. That’s conventional medical wisdom, it’s how recovery happens, especially in modern orthopedics. You push yourself—like a soldier, like an athlete. Otherwise, your muscles atrophy, and you may never be able to make up for the lost ground.

I knew all this going into the hospital. But I was skeptical of it coming out. The doc may have known what he was talking about statistically, but I could tell how traumatized my hip was, all the way down to my knee. I had doubts that it could become flexible and pain-free in so short a time. But I decided to trust the doc’s experience over my doubts. I took him at his word when he said I could recover fully if I “work really hard.”

For the first month out of the hospital I had extensive home health care. A registered nurse, a physical therapist, and an occupational therapist each visited me several times a week. The nurse soon discharged me, since I wasn’t sick. But both therapists stayed with me for a few more weeks, and between them they had me exercising, showering, fixing my own meals, and walking with a cane multiple blocks around our neighborhood.

After the home-health therapists discharged me, I was ready for outpatient physical therapy, the final stage of the post-operative recovery process. From a list of available practitioners I chose one whose office wasn’t far from us. I began therapy with him a month after the surgery. In a progress report to my orthopedist, he described me as “highly motivated.” I interpreted that as positive feedback, and I kept it up. I wanted to restore my hip as soon as I could so I could go back to work, as I’d been assured was possible—if I “work really hard.”

And I did get better. I even felt a little pride in myself when I “graduated” from physical therapy in mid-January, 2011, with a certificate of achievement. Not that I was pain-free. But I could get around for the most part without a cane. I was swimming laps again at the city pool. I had a paying acting gig coming up. And I was back at my part-time job as a church custodian, which, along with Social Security and occasional free-lance performing, has sustained me since the economy and I crashed together.

2. “I Can’t Do This Any More!”

By the time I broke my hip I was down to visits every six months with my cardiologist and taking just an aspirin a day for my heart. I’d also ended an incompatible relationship with my primary-care doc. We’d accepted each other sight-unseen when I first came out of the hospital in 2008, and it was never a comfortable fit. I had an appointment to see another primary-care doc in a few months, an MD who also practices acupuncture and knows holistic medicine. I felt I was working my way out of the abyss of the health-care system, or at least to a more comfortable distance from its center.

But unfortunately the accident with my hip brought the heart doctors back to my bedside. It was to be expected, a routine procedural matter. With my history of recent heart surgery, the orthopedist wouldn’t operate on my hip without my cardiologist signing off on it. So a pre-op heart exam was scheduled.

The exam revealed that I had atrial flutter—an irregularity in the rhythm of my heart beat. The cardiologist said it wasn’t as severe as the atrial fibrillation I’d had before heart surgery, but it was an added risk factor for a stroke. To offset that, he put me on heavy doses of two heart-related medications before the surgery and kept me on them after it. Later, he added a prescription for warfarin, a popular generic version of coumadin, the brand-name blood-thinner. I have an aversion to coumadin, which is also used to poison rats. That fact troubles me. You could say I don’t like the drug’s karma.

In any case, with the heart doctors back in my life I was seeing more health practitioners than ever. When would it end? No time soon, it seemed. In a follow-up visit the cardiologist said my heart was still in A-flutter. The medications weren’t working. He suggested a cardioversion. I consented, and it was scheduled for early January, 2011.

A cardioversion is an electric shock to the heart, done just as the medics do it on TV dramas when a patient’s heart has stopped. The procedure (under light anesthesia with the voltage stepped down) doesn’t always work for atrial flutter, but for me it apparently did because afterwards the cardiologist confirmed that my heart beat was regular.

Within a day after that procedure, however, I began to feel like a wilting garden flower. My legs became so weak I could hardly climb stairs. I lost my breath just bending down to fasten my sandals.

I suspected the strong heart medications were behind it. The doses had never been adjusted, either after the surgery or after the cardioversion. But I’d cut each of them back to half on my own. Now I stopped taking them altogether. In just a day the symptoms were gone. I started taking them again, and the symptoms came back

I called the cardiologist and got an appointment right away. My heart rate, it turned out, was half what it should have been. He agreed the drugs were the cause, and he stopped one but kept the other at half the dose. Since I’d already cut the dose to half without telling him, I also stopped taking that drug altogether. Now I felt better, but I was still on warfarin. The doc promised I could get off it as soon as my test numbers were normal, but they couldn’t get the dose right. The numbers kept jumping around—one week my blood was too thick, the next week too thin. Meanwhile, the slightest bump against a door or a cabinet left an ugly purple bruise on my arm, a side-effect of blood thinners. I couldn’t stand it. I felt old and useless before my time. After several weeks with the numbers still missing the mark, something inside me was saying, over and over, “I can’t do this any more.”

That’s what I finally said aloud to the check-out secretary. She looked at me as if I must be joking. She’d been told to schedule me for another test the following week because the results still weren’t right. But I wasn’t joking. I left without making another appointment. I stopped taking warfarin, switching to a simple, single, daily aspirin.

A few weeks later, as a courtesy, I kept my regular appointment with my cardiologist. He’d seen me through a lot, and I felt I owed it to him to tell him face-to-face that I wanted to take an indefinite leave of absence from health care, let my body alone for awhile, go home, and spend time meditating and preparing for death.

I’m sure I took him back with my declaration of independence, and I’m sure he thought I was making a mistake. But hadn’t he already made a few with me? We shook hands, and I came home, hoping I’d done the right thing.

3. Conventional Wisdom Lets Me Down

During the spring of 2011 the healing in my hip seemed to have stalled. I could walk without a cane, I could even dance in a peg-legged kind of way. But the hip was still stiff and sore, and that’s where it stayed until the summer solstice. I’d taken a long bicycle ride that day, and the next day there was pain in the socket and down the femur as far as the knee. Though not as severe, it was the same kind of acute pain I’d felt right after my fall. And it didn’t go away. Not always but often I couldn’t walk without compensating for it, and as the days became weeks I found it increasingly painful to walk at all. How was I going to continue work? How was I going to enjoy much of anything of my life again?

My most persistent dread was another surgery. But I couldn’t walk around for long the way I was, my left leg stiff and swinging in a sidelong arc with every step. “Circumambulation,” the orthopedist called it. It was the only way I could walk free of that stabbing pain in my hip, and I thanked it for that. But it stressed my other hip and lower back in ways I knew were not sustainable. On top of that, it looked ridiculous.

What was going on? I thought I was following doctors’ orders. Hadn’t they insisted I get up on my feet the day after surgery? Hadn’t the therapists who came to the house praised me for going from a walker to a cane to walking in the neighborhood in just a few weeks? Hadn’t my physical therapist increased the resistance on the exercise machines precisely to make me work harder to build back the strength in my hip and legs?

So what had gone wrong?

I made the dreaded appointment with the orthopedic surgeon, who ordered an X-ray before he saw me. The X-ray would tell whether the replacement had popped out of the hip socket or in some other way gone awry.

The replacement, it turned out, was in perfect position. This was good news. But the doc wasn’t sure why I was experiencing pain. He said he could give me a steroid shot, and I consented. He wrote a prescription for more physical therapy, which I have so far declined. Beyond that, all he could suggest was an MRI or perhaps exploratory surgery. I said I’d see how things went with the steroid shot.

In fact, the steroid seemed to help some. But in a few days my hip hurt the same as it had before. I didn’t think I should ask so soon for another shot. So I made up my mind to deal with it on my own, taking things a day at a time. I now knew there was nothing wrong with my hip replacement. But on either side of it—the upper half of my hip and the upper half of my femur—there was distress, a live memory of the trauma, and a problem with adapting and going forward.

I could only conclude I must have worked it too hard. It was the simplest, most logical explanation. And if that was the case, the conventional medical wisdom to push myself if I wanted to make a full recovery had not worked for me. I wished I’d have trusted myself from the start to set the right pace and the right exercises for my recovery rather than follow the advice of the professionals. I pledged to myself to do that from then on.

I’m now free of appointments with any doctor except my new primary-care physician with the holistic bent. As things stand, I see him four times a year. I want to leave it at that. I want to try getting along as much as I can on my own again. I want to cultivate an absolute trust that if I am meant to live I will live, and when I am meant to die I will die. I am focused on reinforcing that view with meditation and mindful living. Since no doctor can save me from my mortality, I don’t want to be overly treated for it.

4. Setting Out to Sea

Heart disease is a number-one killer in America. Broken hips are a common disabler. I’d been struck down with both. Something big was obviously going on with me. But what was it? Hearts are organs. Hips are bones. They seem like two unrelated systems.

After contemplation, though, I realized that my heart and hip have something very specific in common. They each now have a replacement part. And toward each of those replacements I’ve felt ambivalence. Glad enough to be patched up, of course, at the same time I couldn’t help feeling, subtly but incurably, wounded. I’d always been able to count on my physical body to express my spirit with exuberance. Now I felt insecure in my body, unsure of my former abilities. Could I trust these synthetic foreign parts to work as well as the originals? Could they ever become as flexible and well adapted to my needs? Or had the doctors merely extended my life in a body I could no longer rely on to work as beautifully as it had for the best years of my life?

Without denying the aging process, I decided to try a new approach. I began by welcoming my new parts and supporting them with positive attention during meditation as well as throughout each day. In one of the first discoveries I made in this practice, I realized that the pain in my hip could be minimized or relieved altogether if I simply slowed my walking pace, concentrating on each step, feeling my weight move smoothly through my left hip, shift to my right, return to my left, and so on, while I breathed in a consistent rhythm.

But I also noticed how quickly my mind became bored with this mindful way of walking and took off on its own, moving ever more quickly from thought to thought like a cat chasing sunbeams. And as my mind sped up to its normal beta buzz, my walk sped up too—until a sharp stabbing pain in my hip quickly brought both mind and body back together in the present moment.

Here, I realized, is the mind-body connection in action. My hip is forcing my mind to slow down, and when my mind slows down I feel time lengthen. It no longer matters that I didn’t heal in six months. Maybe it will take me a year. Maybe two.

I feel my stress levels decreasing. I walk easier, though more slowly. I realize I am in a light meditative state. I feel happy. I save myself from another doctor’s appointment.

It’s been several weeks since the steroid shot, when I first realized I had to step back from the pressure of “work really hard” to allow my hip and leg to heal on their own terms, in their own time. During that period I have been pain-free for days in a row. But I have also had days when I was not pain free. This is a work in progress. I suppose all healing is.

Meanwhile, I’ve begun to cultivate my heart as a dear, personal friend, replacement valve and all. Especially in sitting meditations, I concentrate on holding it tenderly in the arms of my consciousness, visualizing the replacement integrating into its organic surroundings. I beam support and gratitude upon it rather than worry and distrust. I breathe life into it.

Sometimes my heart races, but if I persevere in breathing deeply and slowly I can calm it. Sometimes I get a twinge of chest pain, but it eases when I give it my full attention, breathing evenly, listening for a message rather than dialing 911.

I work now at giving my body freedom to be what it wants to be and accepting what it does and how it feels as normal for any given moment. I also work at fully accepting my body’s right to assert its mortality at any given time.

So far, my body hasn’t exercised that right. The pains and twinges pass through. I remain here—writing, acting, scrubbing toilets. Meanwhile, in these practices I’m following my own best medical advice, admittedly driven in part by economics. I don’t want to go into debt to doctors and hospitals, as can easily happen, even with Medicare, in our expensive (and wasteful) system of tests, surgeries, and pills.

But more to the point, it seems a little crude to cling to life in these times when too many people are crowding the Earth. I’d rather let death have his fair shot at me. At 71, I’m old enough to check out without feeling cheated. I’ve had a lot of good times, while the future doesn’t look so great. That doesn’t mean I’m not happy to keep living and working as long as I can. I’m not suicidal. I just don’t want to waste my time following doctors’ orders, which too often are only hit-or-miss opinions, with me stuck with the bill. Better to turn within for health-care advice, following my own guides, than to sit tensely in a medical office waiting for test results to tell me if I’m sick or free to go play some more.


At 7:40 AM , Anonymous Anonymous said...

A beautiful depiction of both our health care system and example of mindful living, and caring for oneself.

Often working in health care it can be frustrating to help people accept the new reality of life either with pain or requiring a change in both physical and mental outlook.
Much more than the average person can hear when they walk through the doors of a medical facility.

Many people want someone to make them better, take away the pain. Yet there is often a message to be received if we are open to hear it. It may not be what we want, as many messages we hear in life are not.

Our health care system is embedded with the sometimes false idea our care providers can make us better. There is little room for accepting responsibility and taking charge for ourselves.
I too believe if we listen to our inner wisdom, truly sit with it, and honor it, we will know what to do and what is the best for us.

A wonderful message you have shared, thank you.

At 1:53 PM , Anonymous Heidi said...

Uncle Delaney,
I enjoyed reading this recap of your medical and unmedical journey over the last couple of years. I am thinking about the same things as I approach the time to give birth in a hospital. I am opting for a natural birth and know that it could be a challenge to make sure the hospital adheres to my wishes without attempting interventions that are unwanted and can just lead to more intervention. I applaud you for deciding to listen to your body and mind instead of the "professionals."

At 9:24 PM , Anonymous Anonymous said...

i admire your courage. you are
an inspiration to me.

thank you.



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