Among the Redwoods

When I was really sick, and I mean really, I spent my days mostly pacing, trying to stay a half step ahead of pain. My entire attention was turned towards noticing degrees of pain in my body. My ability to focus on the world outside of pain became not only limited, but eventually came to feel unnecessary. It was just pain and me. Even Richard was peripheral.

I made lists in my mind about the things I would never get to do again. Things I would mourn, but would sacrifice if it could placate pain and reduce its grip. (The mind takes some strange turns when you're in pain).

I gave up Paris. I knew I would never make it to the Latin Quarter and sit at an outside table at les Deux Magots sipping un grand creme. I gave up scuba diving. I had already felt the incredibly soft underbelly of a sting ray off the Cayman Islands, and could live on that memory. The hardest thing to give up was hiking. Hiking is breathing. It is heart. It is my connection to my body on the earth. But I offered it up to pain, if only pain would go away.

Now, years and medications later, I am hiking again. A few days after a recent relapse and pill recalibration, Richard and I were hiking through giant redwood forests in Armstrong State Park near the Russian River in California.

Wings sprouted and I glided on the wind currrents up and down trails. I inhaled panoramas of rolling hills, ocean, river, clouds, sky. I felt invincible and humble.

When we landed back at the trailhead, feeling the glorious pain of exhaustion and depleted endorphins, we celebrated.

This was a special occasion.

The Pill Game

Damn. Damn. Damn.

I had tapered down to a twice daily dose of smaller amounts of meds and was doing just fine. The kind of fine where I could start to take things for granted again. Things like looking at my watch to see if it's time to take afternoon meds. Like going out into the world without bringing a water bottle so that I would have something to help wash down my meds. Like eating spicy food and tomato sauce, and other trigger foods. Like paying attention to the explosion of wildflowers instead of signals of impending pain bursts.

Then the ripples began. Little spikey fish swimming around my insides. Then glass shards. Then water balloons filled to bursting. Nothing can be taken for granted in this state.

I tell Richard what's going on. Not that I need to. He can see the signs for himself. They're not subtle. I disappear, leaving a trail of pain crumbs for him to follow.

So I follow the instructions I have been given dozens of times. Don't play around with meds. Don't try to take one more blue pill for a few days and then stop to see if it worked. Then add the yellow pill and sprinkle a couple of brown ones here and there, for extra conrol, and color contrast. Then stop, start, stop, start. Don't do any of that.

Go back up to the pill regimen under which I last had the best pain control. And stay there. For at least a month, maybe longer.

So this time I remember the advice. I follow instructions. The pain recedes. I am filled with gratitude and resentment.

That's the way it goes.

This Week's Grand Rounds

is up at Getting Closer to Myself. It's a good read.

What if Your Partner is a Jerk? Part 2 (of 3)

In a previous post I described levels of "jerkiness" in the well partner -- from unaware to indifferent to downright mean. Of course, the ill partner can act like a jerk too, but that's a topic for another post.

The first suggestion I offered for dealing with a well partner who is acting like a jerk is to try empathic communication - to put yourself in your partner's shoes and truly empathize with the disruption illness has brought into his/her life too. Of course, this is just a starting point, and may not work for couple relationships that are more deeply stuck in indifference or meanness. For these situations, there are two more options:

#2) Turn away from his/her darkness and towards sources of light.

If you walk down the same street every day on your way to work, and each time you run smack into a brick wall that leaves you with some nasty bumps, what do you do? Do you continue to take the same path and try walking faster or slower? Or maybe throw in a few dance steps? No matter how you walk, if you're on this path, you will inevitably get bonked by that brick wall.

Einstein described insanity as doing the same thing over and over again and expecting different results.

I don't think we are insane if we repeat relationship patterns, but we are stuck.

When it comes to dealing with a difficult well partner, if no matter what your try - explaining your condition in detail, cooking a nice dinner, humor, asking for what you need, offering to give him/her a back rub, asking him/her what he needs from you, etc. -- nothing changes, then maybe it's time to look for alternative roads to walk.

Perhaps our own sense of self worth is so tied to how our partner treats us that we feel compelled to keep trying to get him/her to love us so we can feel lovable. Perhaps we have invested so much in our relationship and want it so desperately to be good that we can't abide the idea of letting go, even just a little bit. I am not equating letting go with separation or divorce -- that's another discussion. But if the relationship is causing you, the ill partner, a continuous string of daily disappointments and if at the end of the day you're feeling more defeated than strengthened by your encounters with your partner - it's time to turn away from his/her darkness and seek some light elsewhere.

In other words, it's time to stop expecting your partner to be different and begin to act differently yourself.

Begin by understanding that your partner is not the only source of oxygen available to you. Kindness, compassion, help, and empathy are waiting for you if you begin to look in other directions. Think about the range of people in your life and who among them can be a true friend to you. Do you have a mother, father, sibling, aunt, uncle, or cousin who can sit with you and listen? Do you have a few friends who can help with chores or take you out to dinner or a movie? Do you have a child you can play with and laugh with -- even for a half hour? Do you have a dog or a cat who will curl up with you when you need to lay down? Do you have a craft or a hobby you can immerse yourself into -- even for a half hour? Do you have a spiritual community or a spiritual place you can go to to feel part of something bigger than the moment you feel stuck in?

Letting go of the urgent desire for nurturance and understanding from your partner can be excruciating. It can feel like a defeat. Staying in a fruitless struggle may feel like the last tie left holding you two together. But ask yourself, "Is this struggle doing either of us any good? Is it pushing the well partner farther away while it depletes you, the ill partner, of the energy you should be devoting to dealing with your illness and your wellness?"

You need and are entitled to get support. Look for it and when you find it enjoy it. You may find that the loneliness you feel within your primary relationship begins to shift as you experience companionship with a larger community. You may find you start to feel less trapped and more loved. And who knows what may evolve if you become less stressed and less dependent on your partner for empathy.


In Part 3 of this series, I will write about the third option -- Getting help from couples therapy.

The Harm of Omission

This is not a post about couples and illness. As you may know, I often contribute to Grand Rounds, which is a collection of the week's best posts from the health care blogosphere. Each week, Grand Rounds is hosted by a different blog. This week's host is Paul Levy of Running a Hospital. Paul is CEO of a large hospital in Boston and has challenged us to write about "When things go awry." He is asking patients who have been the victim of clinical harm to relate their personal stories, tell how your provider(s) responded, and how the event has changed your view of the practice of medicine and what advice you would give to the profession. I found this topic to be so compelling that this post is a response to Paul's challenge.
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The Harm of Omission

There is harm of commission and harm of omission. I actually prefer the former. At least you can see it, name it, fight it, and point at it while demanding retribution. Harm of omission lives in the shadows. It creates shivers in the fog but doesn't come right out and trip you. Its very greyness makes it much harder to prove that harm happened -- both to yourself and to others.

As a patient lurching down the formidable halls of the health care system trying to get help for a mysterious, debilitating pain condition I was never the victim of harm by commission. No doctor or clinician ever removed a healthy kidney or hooked my IV up to the wrong bag. My medication doses had the decimal point in the right place. I was never given 25 mgs. instead of .25mgs. And, maybe because I'm white, middle class, professional, English speaking, with good health insurance, I was never dissed or dismissed by being told that my pain is all in my head.

But the harm of omission I experienced was grievous and insidious. It took a long time to recognize its existence and impact. And there is no one to blame.

The harm of omission lives at the core of the structure of our health care system. It is that there is really no organizing structure. There are separate disciplines each with its own language, expertise, methods, values, and staff. The highly trained specialists who live within the blue discipline look at a patient through the narrow opening of their unique lens and see only the blue dots that pertain to their piece of the patient puzzle. The orange specialists, the green ones, the purple ones all look through their own limited scopes and see the dots that fit within their sphere of experience.

But patients are not constellations of disparate dots. We are whole, integrated palettes. When the system does not enable clinicians to weave the dots together into patterns, patients fall through the holes and break. This is the serious harm of omission.

Initially, my fantasy about the health care system was that a team of specialists would converge on my case like a pack of predators, and would chew over every bit of data until what finally emerged was the answer. In my fantasy, I would be guided from test to test in a systematic, coordinated manner. I would be directed to higher levels of expertise when lower levels were baffled. I believed that managed care meant that someone, some pack of experts, would swarm over my case to share information and collaborate to manage my care.

None of this ever happened. The specialists I was referred to were the ones who happened to be buddies of the referring doctor. My test results stayed locked inside each health care center's files and were not accessible to specialists outside that system. Even specialists within the same system did not often look at each others reports. And most disappointing was that after each specialist determined that my condition didn't belong inside his/her purview, I got dropped.

One head of neurology after seeing my normal brain MRI told me he had done all he could for me and suggested I might want to try exercising more. A chief orthopedist declared my spine and its asymmetries to be within normal, middle-aged ranges with nothing pinched enough to produce the degree of pain I was having. He told me he enjoyed meeting me and left. By the way, my primary care doctor was compassionate, available, and very helpful. But even he could not make a whole safety net out of all the disparate threads that constituted my care.

I was a slow learner and did not want to give up this sweet fantasy so it took me over a year to realize that for the health care system, managed care meant managing the money around my care, not shepherding me. I finally got it that I would have to be the manager of my own care and the one to connect the dots -- to find the great specialists wherever they may be, to keep my own case record, to be the information bridge between providers, to advocate for care within a system whose rules and knowledge were foreign to me -- and to accomplish all this as a patient in pain.

Imagine if a homeowner were given fifteen minute consultations with an architect, a painter, a carpenter, an electrician, and a plumber and was then expected to organize the renovating of his home.

To have the weakest and least knowledgeable be the leader in a crucial period is a plan that's heading for danger.

The system, through omission dropped me. I did break. For a year I had uncoordinated, disconnected care from multiple providers in different disciplines with no one holding all the information or the accountability. One doctor would recommend I start a new medication while another would recommend that I increase the dosage of the meds I was taking. One doctor would refer me for an MRI at her hospital while all my other MRIs were housed at another hospital. I had a year of living with severe pain that could have been addressed with greater expediency had the health care system been a system designed for the patient.

While this realization busted my fantasy, it has made me a wiser patient. I now don't expect patient-centric teamwork. I don't expect the system to be proactive on my behalf. I don't even expect practitioners to have accurate information about my history. I advise fellow patients to take responsibility for managing their own care. This includes keeping your own case record with copies of all test results; using the internet to become a lay expert on your condition and medications; searching to find the great specialists; asking your providers questions about your options and the risks involved; saying, No thanks," and moving on.

Ideally, I would advise the health care system to minister to itself. To become collaborative, team-based, and knowledge-sharing. Electronic medical records can help concentrate information, but that will not change habitual patterns of behavior and create cross-boundary collaboration. I want the system to rebuild itself around the patient as customer instead of the patient as recipient. To provide a concierge for patients who come with lots of dots, those who don't fit into a single discipline and have complex health issues. To include the patient in conversations about becoming more patient-centric, patient empowering, and creating the "medical home."

However, until this new model becomes a reality, in order for other patients not to suffer the harm of omission and to waste precious time pinging around a broken system, the current system could teach patients how to manage their own care. How to be empowered patients in a system that does not yet give them power. How to be advocates for themselves in a system that too often equates self advocacy with being difficult, and questioning recommendations with being non-compliant. The current system and its inhabitants could teach patients new rules for getting what you need in a broken system.

Would this stress the current already stressed health care system? Yes, of course. But ask yourself, who is better able to bear the extra weight - the system whose mandate is to heal patients, or the patient who is counting on the system for that healing?

Check out Grand Rounds

at Code Blog - this week's best posts from the health blogosphere.

Plus - have a look at this month's Pain Carnival at How to Cope With Pain.

What if Your Partner is a Jerk? (part 1 of 3)

I occasionally get emails and phone calls from people who are living with an illness who tell me about their well partner. In their stories, their Mary or Bob or Pete (fictional names) sounds like a real jerk. Of course, the ill partner can behave like a jerk too. But I'll write about that in another post.

Mary (let's give her that name) is indifferent to his illness. She doesn't ask questions like, "How are you feeling today?" or "What did the doctor say?" She ignores the topic entirely, as if it's a pile of dog poop she's stepping around. She goes to work, stays late, watches TV in the evenings and reads the newspaper on weekends. Sometimes she's having an affair with a healthy, younger man.

Bob (let's give him that name) goes one step further. He doesn't really believe his mate is sick, or as incapacitated as she acts. He accuses her of malingering. He thinks she needs to get up off her saggy ass and just do it. Just do the housekeeping, the grocery shopping, get a full time paying job, manage child care, and appreciate how hard he works to bring in some money. Bob is angry. He believes that his paycheck is his contribution and blames her for not rising above her illness to take better care of him and the household. He often tell her that "it's all in your head."

Pete is downright nasty. He'll tell her he'll come to her medical appointment and then will be a no show. When she asks him, "What happened?" he either says, "What appointment? You never told me" or "Something came up." Pete will point to her constant tiredness or repeated trips to the doctor and accuse her of being selfish. He will withhold affection. He will walk out of the room when she shows signs of exhaustion or too much pain. He will be kind to other unfortunates and small animals in front of her.

How can the ill person cope when the partner is acting like a jerk?

There are three options. Whether they can help or not of course depends on how willing both partners are to listen and change direction. Sadly, reconciliation may just not be possible for some couples. For others, though, tearing through the layers of silence and distance and consciously shifting communication patterns may help.

1) Empathic communication initiated by the ill partner.
The main theme of this blog is that when illness falls into a relationship, it resides in one body, but two lives are dislocated. The well partner's present and future have also been rescripted, without his permission. He may be angry, afraid, ashamed, alone and unable to do anything other than instinctively fight or flee the threat, which he now sees as embodied in his ill partner. Empathizing with his emotional pain, especially when he is expecting blame, can potentially catalyze a shift in the toxic patterns that have gotten established. It doesn't make it all better, but it can create a starting point for the work.

Now this may seem almost impossible to do when you are the ill partner suffering the double whammy of illness and anger/hurt at your well partner. And you may even, covertly, have become invested in raging at his mistreatment instead of looking in the direction of your own fears about the illness or at the fractures that have existed for years in your relationship.

But if you can say to him, "Sweetie, I'm so sorry that my illness has caused you unhappiness and has disrupted your life." "I know you may see me as selfish or not trying hard enough and that must make it even worse for you." "I'd like to try to make things better." "I'd like to hear what this has been like for you - can you tell me?" Then you listen, with empathy. Isn't this what you'd like to hear from him? Over time, with repetition, this kind of empathic communication may become two-way and may lead to a mutual desire to build more companionable patterns into your relationship.

The two other options are:

2) Turn away from his darkness and towards sources of light.
3) Get professional help in the form of couples therapy.

Both these options will be described in a subsequent post. Stay tuned.