How to Live Well with Chronic Pain and Illness Page 4
I used to let what I thought would help my emotional well-being trump what I thought would be kind to my body — and that may be warranted on truly special occasions. I’ve learned, though, that my body feeling at its best benefits me both physically and mentally. Despite this knowledge, there are times when the appeal of something like an evening of socializing, particularly because I’m so isolated, can blind me to the consequences that are sure to follow. This may not be the case for everyone but, for me, a day spent in bed feeling terribly sick almost always wipes out whatever emotional benefit I gained from the evening.
Once you begin to say no, it gets easier and easier. Think of it as a practice. That way, you won’t hold yourself to too high a standard. Because I have a lifetime of conditioning to overcome, I still say yes sometimes when it would be self-protective and self-compassionate to say no. I’ve spent most of my life trying to please others, even when following their lead wasn’t kind, helpful, and true to myself. But at last, I’m getting better at saying no and, when I do, it feels good — both in body and in mind.
5
When the “Want Monster” Whispers in Your Ear
The greatest wealth is a poverty of desires.
— SENECA
WHEN I WAS a young girl, I wanted a horse. Almost every day, I begged my parents to get me one. Now I look back with sympathy at what my poor parents were forced to say to me over and over again: “You can’t have a horse in the middle of Los Angeles! Where would you keep it? Where would you ride it?” At the time, none of their attempts to discourage me mattered. All I wanted was a horse. I truly believed that if I had one, I’d be happy for the rest of my life. Even more: I couldn’t imagine being happy unless I could have that horse.
How many times have you smiled and shaken your head in disbelief at how positive you were that some material thing or some particular experience was absolutely necessary for your happiness? Now you look back and those desires are simply items on a list of “wants” that no longer have any hold over you.
It’s easy for me to recall that young girl and laugh at her out-of-control desire for a horse, but the fact is, I can still want something so badly that it feels like a need over which I have no control. This type of desire is more than just a preference for, say, vanilla ice cream over chocolate. It can be so intense that I talk myself into believing that if I can’t get what I want, I’ll never be happy.
These days, most of those wants are related to the desire to regain my good health. Here are some of the “wants” that periodically come up for me since becoming chronically ill:
Wanting to take my granddaughters places
Wanting to travel again to Hawaii with my husband
Wanting to be symptom-free for a few days
Is there something in your life that you want so badly that it feels as if your happiness depends on getting it?
My friend Sandy calls this the “Want Monster.” When her two children were young, she used this phrase to help them become aware of their tendency to want anything that appeared pleasant to them, whether it was a material thing or an experience. If they were in a toy store and started madly grabbing for stuff, she’d remind them that this was the Want Monster showing up and that it need not be satisfied. If they thought they couldn’t be happy unless they went to Disneyland, she’d remind them: it’s just the Want Monster.
Our desire to satisfy the Want Monster can feel so intense that we can talk ourselves into believing that getting what we want is necessary to our very ability to be happy. This belief is reinforced by that ever-present cultural message — perhaps better characterized as “cultural bombardment” — telling us that the key to lasting happiness is getting what we want: a better car, a new relationship, an expensive piece of exercise equipment that will get us back our youthful bodies.
And yet the type of happiness that comes from satisfying the Want Monster is short-lived — because nothing is permanent. A car will go out of fashion or wear out. Even relationships that stand the test of time don’t bring with them permanent, ’round-the-clock happiness. And bodies age, no matter how much we exercise them.
This conviction that the key to happiness is satisfying our desires sets us up for a big dose of disappointment and dissatisfaction with our lives. One reason for this is that most of our desires go unfulfilled — we simply don’t get our way a lot of the time. In addition, our minds are as ever-changing as everything else in the universe, so even when we’re able to fulfill a desire, it’s unlikely to satisfy us for long. It soon gives way to a new desire. As Oscar Wilde famously said: “There are only two tragedies in life: one is not getting what one wants, and the other is getting it.”
I often hear the Want Monster whispering in my ear: “If only you could get your health back, everything would be great for you from now on.” When I reflect deeply, though, I realize that this is a delusion. If my health were restored, my life would still have its share of problems.
I’m not suggesting we become passive and give up our efforts to try and make things better for ourselves. I’m always on the lookout for new treatments — I consult with Dr. Google regularly. But I also know that I’m entering into the land of delusion when I find myself believing that getting my health back would make me forever happy.
In the end, the type of happiness that depends on satisfying the Want Monster is not the happiness I’m looking for; I know it would only be temporary. I’m looking for happiness that comes from being content with my life as it is, whether or not I’m able to take my granddaughters places, or travel to Hawaii, or even regain my health.
This happiness comes from acknowledging and accepting without aversion that, despite my best efforts and despite my hopes and dreams, sometimes things don’t work out as I want them to. This happiness comes from making peace with the stark realities of life — that it’s a mixture of pleasant and unpleasant experiences, easy times and hard times, getting what I want and not getting what I want. It’s that way for everyone, and has always been. This happiness comes from opening my heart and mind to engage each day fully, even though I know it may be a day in which the Want Monster goes hungry.
No matter how tight a hold the Want Monster seems to have on us, the good news is that, with practice, we can free ourselves from its grip. Over 2,500 years ago, the Buddha said what neuroscientists are confirming today: the mind is malleable, and so it can change. The Buddha put it this way: “The mind is as soft and pliant as the balsam tree.” Neuroscientists say that the mind is constantly rewiring and reconditioning itself. This means we can reverse those deeply ingrained habits that keep us believing in the delusion that our happiness depends on fulfilling our desires.
Mindfulness practice is the path to freeing ourselves from the Want Monster. The first task is to become aware that a Want Monster–type of desire has arisen. Then we can make a conscious decision not to let it talk us into believing that getting our way will solve all our problems. It may whisper in our ear that regaining our health is a have-to-have-it-or-be-miserable-the-rest-of-our-life desire, but we know that true happiness does not depend on satisfying that longing.
When we’re able to treat the Want Monster as nothing more than mental chatter — an event in the mind, arising, hanging out for a while, and then passing away — we’ll be free to fully engage with what this particular day has to offer.
6
Complaining Is a Recipe for Suffering
If you are irritated by every rub, how will your mirror ever be polished?
— RUMI
FOR THE CHRONICALLY ill, there’s lots to complain about: ongoing unpleasant symptoms, the loss of the ability to do things, friends gone missing, unresponsive doctors, uncertainty about the future. The list is long. In my experience, however, complaining is rarely productive; it’s almost always a recipe for further suffering and dissatisfaction.
Most complaining centers around a desire to control what’s happening to us. One of life’s stark realities, however, is that we have limited cont
rol over how things are unfolding at any given moment. We hear that Want Monster whispering in our ears, but we can’t seem to get our way. And so, instead, we complain.
Here’s an exercise to remind ourselves that complaining isn’t a skillful way to respond to the circumstances of our lives. I hope you’ll join in. I’m going to start by making a sample list of complaints:
1.I don’t want to be sick anymore.
2.I don’t want to get old.
3.I haven’t moved for twenty minutes on this [censored] freeway.
4.I’m put on hold for way too long whenever I call my doctor’s office.
5.My partner is always complaining about my poor health.
6.I hate being in constant physical pain.
7.My friends should call more often to see how I’m doing.
Don’t judge yourself negatively over the length of your list. That is, don’t complain that your list of complaints is too long! That type of self-critical thinking can keep you from reaping the benefits of this exercise. It’s nothing more than a list of your complaints. Hold it lightly.
The issue here is not whether your complaints are justified. Justified or not, they still reflect dissatisfaction, because underlying a complaint is the desire for life and the world to be different than they are.
Now go through your list and separate it into three parts: (1) those complaints involving circumstances over which you have no control; (2) those complaints involving circumstances over which you might have some control; (3) those complaints involving circumstances over which you have total control. It’s highly likely that none of your complaints will fall under (3).
No Control
If this were my list (honestly, it’s not — well, not all of it!), I’d say that I have no control over numbers 1, 2, 3, and 4. That’s over half the items on the list. These four involve conditions in my life and in the world that aren’t within my power to change. I can change my response to these four conditions (and that can definitely reduce my suffering), but I can’t change the bare facts of these circumstances:
1.I’ve tried dozens of treatments; for now, there’s no way around it: I’m chronically ill.
2.No amount of complaining will keep me from getting old.
3.I have no control over the flow of freeway traffic. Maybe there was an accident up ahead. Maybe there’s road work in progress. Complaining about a traffic jam won’t clear it up any sooner.
4.I don’t control how long I’ll be put on hold. It may be a very long time. I can spend that time fuming about it, or I can spend that time doing something pleasant, such as crocheting or surfing the internet.
Look over your own list and see how many of the items are out of your control entirely. Can you see that complaining about circumstances you cannot affect is pointless? And worse than pointless — harmful. Such complaining serves only to add suffering and dissatisfaction to an already unpleasant situation, making you more stressed, anxious, and unhappy.
Are there any items on your list that you can let go of, since you can’t control them anyway? If yes, does letting them go bring a sense of relief? Whenever I use the phrase let go, I recall the words of Thai Buddhist monk Ajahn Chah:
If you let go a little, you will have a little peace. If you let go a lot, you will have a lot of peace. If you let go completely, you will know complete peace and freedom. Your struggles with the world will have come to an end.
As inspiring as his words are, there may be times when you can’t let go of a complaint. It’s simply too hard. When that happens, simply let it be by acknowledging with compassion for yourself that the complaint is a source of suffering for you. This simple act in itself can keep you from ratcheting up the intensity of your complaining.
Partial Control
For this category, I would select numbers 5, 6, and 7, although I’m not convinced that some of them wouldn’t fit better under “no control.”
To address the items in this category, begin by recognizing that since you have only at best partial control over these complaints, you should consider letting them go. At the very least, try letting them be by not putting more energy into complaining about them.
5.What are the chances that complaining about my complaining partner will make him complain less?
6.Does it lessen my physical pain to hate it? On the contrary: it could intensify the pain. Stressful emotions, such as anger and hatred, often lead me to tighten muscles around points of bodily discomfort, increasing my overall pain load.
7.Is it fruitful to make myself miserable by complaining about my friends not calling more often since I don’t control their behavior?
Because these three are categorized under “partial control,” think about what kinds of skillful action might be effective. (I define “skillful action” as speech or action that eases stress and suffering for ourselves or others.) Start by acknowledging, without judgment, that things are as they are: a complaining partner, the presence of physical pain, friends who don’t call often. This nonjudgmental assessment facilitates dispassionate problem-solving.
5.Could I try some strategies with my partner that might help him complain less about my health, such as validating his feelings? For example, I could say to him “It must be so hard on you for me to be sick all the time” or “I’m sorry if you miss going out together.” Could I raise the idea of couples therapy?
6.Could I get a referral to a pain clinic, or try some of the mindfulness-based practices in this book that are specifically intended to help cope with pain? (See, for example, chapter 11.)
7.Could I pick up the phone and call my friends myself?
Total Control
I don’t see anything on the list over which I could claim total control.
Complaining is a habit that clouds our ability to see that most of our complaints involve circumstances over which we have little or no control. If our peace of mind depends on controlling every aspect of our lives, that peace will always elude us. When we’re not getting our way, instead of moving straight into complaining mode, we’d suffer less if we took a few conscious breaths and then used our mindfulness skills to calmly assess whether or not there’s anything we can do about the situation. If there isn’t, we can try to let it go — at least, we can try to not intensify our complaining, which only makes us feel worse.
When we’re able to acknowledge and accept without aversion that our lives will include experiences that won’t be to our liking, we’ll be better able to take those unpleasant experiences in stride — or, as Rumi put it, not be “irritated by every rub.” Then our tendency to complain will subside. What a sweet relief that would be!
7
Dealing with Tough Choice after Tough Choice
Start where you are. Use what you have. Do what you can.
— ARTHUR ASHE
BEING CHRONICALLY ILL can feel like a full-time job — an exhausting one at that. We’re constantly engaged in an ongoing evaluation of whether we’re managing our health and our relationships with others as skillfully as possible. Then, based on those assessments, we have to choose the most beneficial course of action, even though the choice may not be a completely satisfying one. That’s why what follows are not just choices but tough choices.
Do we talk openly about our health problems, or do we keep them private?
In chapter 1, I wrote about the importance of trying to educate those we’re closest to so that we can receive the support and understanding we need. But what do we do about the many other people we encounter in life, such as coworkers and casual acquaintances? How do we respond when they ask us how we are?
On the one hand, if we talk openly about our health problems, some of them may turn away in aversion and avoid us from then on. Others may have the opposite reaction; they may become so concerned about us that we find ourselves in the role of temporary caregivers, having to reassure them that they shouldn’t worry and that we’re coping fine (even if we’re not). Still others may take it upon themselves to lectur
e us on what they think we should or shouldn’t be doing — and then be upset with us if we don’t follow their advice.
On the other hand, if we treat our health issues as private — even acting “fake healthy” as I’ve been known to do — we risk misleading others about what we’re capable of doing. In addition, hiding our symptoms can make us feel as if we’re betraying ourselves by being dishonest about what our lives are like. Finally, by keeping quiet, we may be passing up a genuine opportunity to connect with another person and to receive much-needed support — both emotional and practical.
And so, when faced with the dilemma of how to respond to someone’s inquiry about how we are, we have lots of choices. Quickly assessing the situation and then making an on-the-spot decision about what to share and what to keep private can be exhausting.
I can’t offer a simple answer to this dilemma or to the other tough choices in this chapter. All we can do is try our best to evaluate our circumstances and our needs, and then choose the course of action that appears to be the most beneficial and compassionate for us.
Do we follow our doctor’s treatment plan, or do we try alternative therapies?
After becoming chronically ill, I spent most of my time in bed, using my laptop to search the internet for cures. It took me several years to realize that anyone can create a website, set up a payment plan, and ask for my credit card number. Anyone. Treatments-for-sale can be packaged to sound irresistibly seductive. People spend thousands of dollars on false cures. I know, because I’ve done it.
On the other hand, I’ve also read about people who’ve been helped by alternative treatments, so disregarding them outright is not always the best decision. This tough choice makes up a major part of the workload for the chronically ill. What should we try? What should we not try? How much research should we do on a treatment option before deciding if we should try it or not? If we try something, how long should we give it before deciding whether it’s helping or not? How should we budget for it? What should we tell our doctors about it? No way around it; this is exhausting work.