How to Be Sick (10 page)

Authors: Toni Bernhard,Sylvia Boorstein

BOOK: How to Be Sick

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I include patient endurance on my list of compassion practices because it can help alleviate our suffering as we face the many difficulties that result from being chronically ill. One recurring difficulty is the uncommon number of hours spent navigating the healthcare system, whether it’s trying to get approval from an insurance company for a particular treatment or encountering a long wait or other challenge at a medical facility. Cultivating patient endurance can help caregivers too, because they often find themselves in the role of “patient advocate” for their loved one.

In general, I’ve found that when dealing with the health care system, if I don’t “endure” (the assertive part of César Milan’s instruction), I often don’t get decent service. At the same time, if I’m not “patient” (the calm part of César’s instruction), the frustration stemming from the interaction exacerbates my symptoms. Indeed, patience is a strong antidote to anger—a state of mind that causes so much suffering.

I’ve found that I need a good dose of patient endurance whenever I navigate the byzantine bureaucracy of my health insurance company. One of the most trying odysseys involved a prescription drug recommended to me by an expert in Chronic Fatigue Syndrome at Harvard. Of all things, it’s produced from pig’s liver.
In vitro
, it has proven to have antiviral qualities and is approved by the FDA to treat some skin conditions. To begin with, I had to get my own doctor to prescribe the drug. Not surprisingly, he was reluctant when I raised it as a possible treatment. This would be an off-label use of a drug so esoteric that it didn’t even appear in his prescription drug manuals. Plus, I’d have to learn to inject myself at home. It took about a month for him to read over the research materials I provided and do his own investigation, but in the end he agreed.

With that taken care of, I could now approach my insurance company, which had no obligation to approve an off-label use of the drug. But I thought it was worth a try because the drug was so expensive. After three lengthy phone calls, I succeeded in getting approval for a three-month trial period. It was February. The representative said that the three-month trial would expire on May 15. Even though these lengthy phone calls were exhausting, I was happy with this result. Little did I know the difficulties were just beginning.

The drug is imported from New Zealand and only one pharmacy in the United States is authorized to dispense it. Even though I told them this, my insurance company insisted I use the pharmacy that it contracts with to dispense all injectable drugs. I tried over and over to explain to the representative that the pharmacy she was trying to send me to would not have access to the drug. She simply would not listen. Realizing that she was not going to budge, I wrote down the phone number for the pharmacy she said I had to call. At times during this conversation, I could feel impatience beginning to arise. I wanted to get pushy with her, but I knew it wouldn’t change her position and would only exacerbate my symptoms. As it was, I was exhausted from the interaction. “Khanti
,
” I silently repeated to myself. “Khanti, khanti.”
Patiently endure, patiently endure.

Like a soldier on a mission she knows cannot be accomplished, I called the pharmacy she said I had to use. To my surprise, I was told, “No problem. We’ll dispense it.” I hung up, feeling a bit sheepish. But there was no time for reflection because I had a third call to make—to my doctor to tell him to fax the prescription to them. He did so. Mission accomplished?

Oh, no.

The next day, a woman from the pharmacy called to tell me what I already knew. I must use the pharmacy that has sole dispensing rights for the product. And she said it was
my
responsibility to call my insurance company and inform them. I felt like I was on a Moebius strip, taking action after action, but always winding up back where I started.

I took a deep breath and began again. I was already suffering from physical and mental exhaustion as a result of spending so much time on the phone. I didn’t want to double the suffering by allowing impatience to take hold. So, with patient endurance as my protector, I called my insurance company and succeeded in getting the representative to phone its contracting pharmacy and get confirmation that it could not dispense the medication. A couple of phone calls later and I thought I everything was in place. My doctor would re-fax the prescription to the pharmacy with the sole dispensing rights. All I had to do was wait a few hours and then call the pharmacy to arrange for shipment.

In excitement, I made the call. They were out of the drug. It had been shipped from New Zealand but was stuck in Australian customs. For the next three months, I called this pharmacy once a week. Each time, I was given a new ETA. By the time the medication arrived in the States—a year after I started researching it and three months after my doctor wrote the prescription—it was after May 15 and the three-month trial period approved by my health insurance company had expired. Time for yet another phone call, a call in which the insurance representative told me there was no provision for an extension of an approved trial period, so I’d have to start all over if I wanted them to re-consider approving the drug. Moebius strip. Help: khanti needed!

In the end, I tried this much sought-after and hard-won medication—and it did nothing whatever to improve my condition. But the moral of this tale is that it might have helped (it has helped others) and so, looking back, it was the continual cultivation of patient endurance that gave me the opportunity to try the treatment.
Patience
enabled me to pursue getting the medication while keeping the exacerbation of my symptoms to a minimum.
Endurance
enabled me to make that “one more phone call” that eventually got me the result I was after.

Sometimes being sick feels like a full-time job. While I perform this work, I keep patient endurance at my side. It’s a compassion practice for myself because it helps keep frustration and anger from arising—two states of mind always waiting in the wings when I have to navigate the healthcare system.

Before I learned to cultivate compassion for myself as a chronically ill person, I passively accepted whatever happened when I got to a medical facility. No matter how intense my suffering, I took no action to alleviate it—because I blamed myself for being sick. I recall, for example, an appointment I had with an ear, nose, and throat specialist in the fall of 2001 to evaluate a persistent hoarseness that was a feature of the acute phase of the illness. I dragged myself out of bed for Tony to drive us to the clinic only to find that we had to wait three hours to be seen. I tried every position I could think of to turn the waiting room chair into a reclining piece of furniture. I slumped down on my back; I slumped down on my side. Then I tried to use the chair as a bed, bending my knees to get my feet up on it and laying the middle part of my body over the hard armrest and my head on Tony’s lap. The physical pain and discomfort was matched by the mental suffering that arose from blaming myself for being sick and subjecting not just me but Tony to this misery.

Six years later, I was taking an antiviral under the supervision of an infectious disease doctor. On the drive from Davis to the infectious disease clinic, I would always lay in the back of our van. But the wait at the clinic was always longer than the time it took to get there—over two hours. At the first appointment, I employed my usual techniques of first trying to turn an upright chair into a recliner and then trying to lie across Tony’s lap. It took me weeks to recover from the trip. I dreaded the follow-up appointment. But at that second visit, having already begun to cultivate compassion for myself as a chronically ill person, khanti kicked in. After an hour of waiting, I calmly and politely told a staff person that I needed to lie down. To my surprise and relief, after a few minutes, she showed us to an empty room and said I could lie on the examining table until the doctor could see me. When I approached the staff person, I didn’t complain, but neither was I passive. Instead, I took compassionate action on behalf of myself.

Opening Your Heart to Suffering

The third way I cultivate compassion for myself is to consciously work on opening my heart to the intense emotions—and emotional swings—that accompany chronic illness. This practice began quite unexpectedly one day in 2009 when my daughter’s family had come up from Los Angeles for Labor Day weekend. I was three months into a new treatment and was feeling optimistic about its prospects. Tony and I thought this might be the one, and indeed, I’d been able to spend more time than usual visiting with everyone. But the morning after they left, I awoke feeling like my old sick self.

As I lay in bed that day, I began to fear that this treatment, like the others, was going to be a disappointment. The fear grew more and more intense, so I began to follow an instruction I learned early on in meditation practice: labeling thoughts and emotions. “Fear, fear—this is fear,” I silently repeated. Sometimes it’s difficult to do this work without falling prey to aversion—as in “Fear, this is fear. It’s time to go away, fear. Get out of here now!” I’ve practiced “labeling” myriad times, both in and out of meditation, but this time something different happened. As I noted “fear . . . fear,” instead of passively waiting for it to pass on through, there was a shift in consciousness and I just opened to it. Then the thought arose: “My heart is big enough to hold this fear.”

And so, alongside all the other experiences of my life, I made room for fear. I felt a great spaciousness and expansiveness. Soon I became aware that a gentle smile had appeared on my lips as if to say, “Ah, yes. My old friend, fear.” And so the seed was sown for a new compassion practice: opening my heart to the full range of emotions that life has in store for me.

I’d like to close our exploration of compassion with a verse from a Tibetan Buddhist master, Nyoshul Khenpo Rinpoche. Before getting sick, my mind could certainly be “exhausted” and feel as if it had been “beaten helpless,” but chronic illness has the potential to exacerbate those mental states tenfold. I recite this verse as a compassion practice, to reach out to my own suffering. If you want to recite it, you can also try substituting “causes and conditions” for
karma
and “suffering-filled life” for
samsara
:

Rest in natural great peace,
this exhausted mind;
beaten helpless by karma and neurotic thought,
like the relentless fury of the pounding waves
in the infinite ocean of samsara.

Facing the Ups and Downs of Chronic Illness with Equanimity

Let things take their natural course.
Then your mind will become still in any surroundings,
like a clear forest pool. All kinds of wonderful,
rare animals will come to drink at the pool. . . .
You will see many strange and wonderful things come and go,
but you will be still. This is the happiness of the Buddha.

—AJAHN CHAH

UPEKKHA, EQUANIMITY, is the fourth of the sublime states. My computer’s dictionary defines equanimity as “mental calmness and evenness of temper, especially in a difficult situation.” That’s as good a definition as I’ve seen for this central Buddhist concept and practice. Dwelling in equanimity, we are able to face life’s difficulties with a mind that is at peace. Indeed, some teachers equate this mental state with enlightenment—also known as awakening, liberation, or freedom.

For a chronically ill person, equanimity can be a particularly difficult state of mind to sustain—and so it helps to have both inspirational teachings and practical techniques at hand. I find the challenges fall into three categories:

▶ maintaining equanimity in the face of the barrage of unhelpful, inaccurate, and often insensitive comments people make about the illness

▶ weathering the unpredictability and uncertainty that accompanies chronic illness

▶ feeling overwhelmed with loss—lost health, lost job, lost friends, lost mobility, lost money

Naturally, these challenges are not entirely exclusive to those who are chronically ill. Dukkha is, after all, an equal opportunity employer. Nevertheless, chronic illness can quite often give rise to a critical need for equanimity.

Insensitive and Hurtful Comments

Anyone who is chronically ill—especially if, as in my case, the illness is not visible to others—will have encountered the first challenge many times: how are we to maintain evenness of temper and calm in the face of comments from others that, even if well-intentioned, are so off the mark that we feel misunderstood and often disregarded?

My Internet wanderings have revealed that the chronically ill are subject to remarks from family and friends that are eerily identical in content and reveal a profound ignorance about what it’s like to be sick. Here’s a sampling of comments, from Australia to Finland to Switzerland to my own ears in Davis: