The most prominent object in most bedrooms is the bed. Those of us who are chronically ill use it a lot. I wrote my first two books from the bed and I’m writing this one from the very same place. It’s all happening in a four-foot-square space. I’d be able to call it a two-foot-square space except that my printer is four feet from the bed — still close enough, however, for me to reach with a good stretch of my left arm.
As you’ll see in chapter 41, my bed is my office, my craft center, my entertainment center, my dog playground, my dining room. From my experience, I’d be hard-pressed to find a chronically ill person who only uses his or her bed for sleeping and for sex.
Conventional wisdom: Go to sleep at the same time every night.
I try. I really do try. Unfortunately, pain and other symptoms — not the clock — dictate when I’ll be getting to sleep.
Conventional wisdom: Don’t nap during the day.
According to the sleep hygiene experts, the reason for this rule is that napping will disrupt your natural patterns of sleep and wakefulness. Unfortunately, for the chronically ill, those natural patterns have already been disrupted.
As for me, I can’t get through the day without a nap, not because I’m sleepy, but because after a certain amount of activity, my body breaks down the way a healthy person’s body breaks down when he or she has the flu. I’ve tried going without a nap just to be sure it’s necessary. The consequence is not a pretty sight. It’s not pretty that afternoon, nor is it the next day when I’m still experiencing “payback” symptoms from my little adventure. Oh, and I consider it a small victory if I only need one nap. I’ve been known to need four.
Conventional wisdom: Aerobic exercise helps you sleep better.
Perhaps this would be true for me; I’ll never know. As is the case for most people who are chronically ill, this kind of exercise is out of the question.
Conventional wisdom: Move the TV out of the bedroom.
This may be a good idea for some people, but if I didn’t have a TV in the bedroom, I’d not have seen a single movie released since 2001, the year I got sick. The best I can do to accommodate this sleep hygiene rule is to turn the brightness way down on the television set. It doesn’t make for great TV viewing for my husband; it’s a good thing he’s such an accommodating guy.
Conventional wisdom (and my personal favorite): If you don’t fall asleep in 15–20 minutes, or if you wake up in the middle of the night and don’t fall back asleep in 15–20 minutes, get out of bed, go into another room, do something nonstimulating for a half hour, and then try again.
First, I never fall asleep in 15–20 minutes. It takes me longer than that to get comfortable. Once I’m comfortable, I have to wait until the symptom parade calms down. On a good night, I’m asleep after about 45–60 minutes. On a bad night… well, let’s not go there.
Second, (and this may be the most valuable piece of advice in this chapter), I’ve discovered that I feel much better the next day if I don’t get out of bed when I wake up in the middle of the night and can’t get back to sleep. Instead, I “fake sleep”: I lie in bed in my usual sleeping position and pretend to sleep. I’ve tried both — getting up versus fake sleeping. For me, the latter makes the day to come much more bearable. To my surprise, many people have written to me about the value of fake sleeping. And here I thought I’d invented it!
I’ve become so adept at fake sleeping that I’ve started fake napping. Some days, the severity of my symptoms keeps me from falling asleep during a nap. When this happens, I’ve discovered that it’s better to lie still for an hour or two instead of getting up. My husband and I call this a “shutdown,” as in “all systems are shut down, even though no sleep is taking place.”
This chapter may be lighthearted in tone, but the issue of sleep is a serious one for the chronically ill. We wish the conventional wisdom regarding sleep hygiene worked for us; we’d be so much more functional if we could sleep better.
23
Longing for That Pre-Illness Life
The obstacle is the path.
— ZEN PROVERB
NOW AND THEN, I feel unsettled and edgy, but I can’t put my finger on why. If I mindfully investigate how I’m feeling, it often turns out that the source of my uneasiness is a longing for my pre-illness life. None of us wants to get stuck in a painful longing for a life we can no longer lead, and none of us wants to get caught in the net of stressful emotions that tend to accompany that longing — emotions that include frustration, restlessness, and even anxiety. Yet sometimes that’s exactly what happens: we find ourselves stuck in a longing that simply cannot be satisfied.
The Vietnamese Zen monk and teacher Thich Nhat Hanh said: “Awareness is like the sun. When it shines on things, they are transformed.” When I expose this longing for my pre-illness life to the sunlight of mindful awareness, I can begin to work skillfully with it. I start by giving myself a dose of reality: “You’re in a body, and bodies get sick and injured. It happens to everyone. This is how it’s happened to you. No amount of wishing it were otherwise is going to change that.”
Then I take a deep breath — a sigh, really — and let the longing be. Yes, I let it be. I don’t try to force it away, because that tends to set up a stubborn resistance in my mind. I simply let it be, with compassion for how hard it is to be missing my old life. As I let it be, I reflect on impermanence. Thoughts and emotions arise; thoughts and emotions pass away. If I’m patient, I know that the longing will subside, even though it may return to visit on another day.
As you read through this chapter, I hope you’ll keep in mind our tendency to put the past on a pedestal. My life before I got sick wasn’t always pleasant. It had its good times and its tough times. That said, here’s a sampling of what I miss most about my life before chronic illness. Some of these I’ve managed to find substitutes for; others have been lost. Based on the many emails and other communications I get from people who are chronically ill, this list will be familiar.
The ability to be spontaneous.
Having to plan everything out in detail is rarely fun. Having to then impose those detailed plans on others is never fun. In the fall of 2013, my brother-in-law and his wife drove from about an hour away to have dinner with us. It would have been nice if we could have said to them: “Come any time in the afternoon; we’ll hang out and then eat a leisurely dinner.” Unfortunately, we couldn’t offer such an open-ended invitation; it simply won’t work for me.
If I visit in the afternoon, I won’t be able to join them for dinner. And if they only come for dinner, it had better be an early one because at about 7:00, I turn into a pumpkin, as we put it in our household. So they came at 4:30, and we ate dinner at 5:30. It was great to see them, even though there was nothing spontaneous about the occasion — at least not to me.
If people unexpectedly call and say they’re in town and would like to come over, whether I can visit depends entirely on the timing. I can’t get through the day without a nap — and then, of course, there’s that turning into a pumpkin by early evening. Truth be told, unless my husband is home, I rarely say it’s okay for people to come over. This is because, if he’s home, I know I can disappear into the bedroom if I have to. Not that this feels good to me — it can feel as if I’m hiding out from the very people I want to see. Many a tear has been shed in my bedroom over my inability to be spontaneous when it comes to socializing.
Then there’s the lack of spontaneity when something comes up on the spur-of-the-moment. One day, my husband said, “Hey, Lincoln is playing in town. I’d love to see it!” And I thought, “I’d love to go with him.” Then that dose-of-reality voice took over: “Hmm. It’s two-and-a-half hours long, so with the previews and ads, that’s closing in on three hours — much longer than I can sit up for. When I face that kind of wait at a doctor’s office, I have to ask for a room to lie down in. I’ll not be going to Lincoln.”
This inability to be spontaneous impacts our loved ones too. When I decline someone’s offer
to come over for a visit, it cuts my husband off socially as well. And as for movies: if he wants to go to one, unless he’s out-of-town, visiting family, he goes alone.
Variety.
They say variety is the spice of life. If so, my spice rack is pretty bare. I’m not complaining. It’s just the way things are. I know how fortunate I am to live in a comfortable house with a loving partner, but still, every day is much the same for me. Some days, that “sameness” can get me down. My husband and I don’t even have the questionable luxury of dealing with variety in my health issues. Because my condition has remained almost unchanged since 2001, conversations between us about my health cover the same territory, over and over again.
I miss the variety that comes from seeing different people. As a teacher, I used to stare out over a sea of as many as a hundred different faces at one time. And when I wasn’t in the classroom, I was a people watcher. Sometimes at restaurants I’d imagine a “back story” to the lives of those I’d be watching. Now I pretty much see the same people every day — and I already know their back stories.
When I feel sad about my inability to be spontaneous or about the lack of variety in my life, I begin by evoking compassion for myself; I gently remind myself that life can be hard at times, and that losses like these can be painful. Then I cultivate equanimity by reminding myself that everyone’s life is a mixture of joys and sorrows, and that I feel better when I make peace with my disappointments, first by gently acknowledging them and then by allowing acceptance to settle in at its own pace.
Being actively involved in the life of my family.
I miss socializing in general, but what I miss most is being active in the life of my family. I miss the joy of having all of us gather together at the same time. I miss going to my two granddaughters’ special events, such as Malia’s dance shows and Cam’s Little League games. But mostly, I wish I could take the two of them on little outings. One day in 2012, my husband took the hour drive to our granddaughter Cam’s house for the sole purpose of driving her across the Bay Bridge so they could ride a cable car together in San Francisco.
That’s what I miss.
Time in nature.
Some people who are chronically ill may miss hiking in the wilderness. My time in nature was more tame; I spent a lot of it in the arboretum at the University of California–Davis. The arboretum sits next to the law school building where I worked, and I walked the paths that line its creek almost every day. I knew every plant and tree and how they looked during each of the four seasons. I knew where the little green heron would be watching for fish and where the turtles would be sunning themselves on the banks of the creek.
My backyard has become my substitute for those forays into nature. I’ve become acutely aware of the four seasons moving through the deciduous trees that I see through my bedroom window — a mulberry, an elm, and a fig tree. Until I became sick, I didn’t know what a prize those figs were for the birds in my neighborhood.
The ability to pursue my former interests.
Perhaps you were an active outdoors person or an avid moviegoer or a social activist. Maybe you loved to exercise or dance. One of my favorite pastimes was birdwatching. I particularly loved to spot shorebirds at marshlands and at the beach. I had a journal in which I recorded each sighting: the place, the day and time, the type of bird. From a friend who was an expert birder, I learned that the best way to identify a bird was to memorize a unique marking that I could then look up later in one of my bird books. If I still didn’t know what it was, it went down in my journal as an LBJ, a designation taught to me by another birder-friend: Little Brown Job. (Were I able to go birding today, I’d probably identify birds on the spot by using an app on my smartphone!)
I don’t see shorebirds anymore, but I’m learning to appreciate the beauty I’d taken for granted that’s within eyeshot of my house: white-crowned sparrows, house finches, and the occasional hermit thrush in winter; doves and robins in spring; a quick fly-through of cedar waxwings if I can catch them; scrub jays and mockingbirds year-round.
Scrub jays are so common in California’s Central Valley (we call them scrubbers) that I forget how stunning they are. Sometimes I treat a scrubber as a rare sighting by pretending I’ve never seen one before. Every time I do this, I’m amazed anew by the beauty of its iridescent bright blue and silver coloring.
Helping people out face-to-face.
Before I got sick, I was a court-appointed mentor for a boy in Child Protective Services. I was allowed to see him once a week. I’d pick him up at the home for emotionally disturbed boys where he lived, and we’d go out to dinner and then do something fun together. The two of us grew very close. I still feel bad that I couldn’t continue to be a part of his life after I got sick (we weren’t allowed to give our address or phone number to our child). And although it’s been many years, I occasionally worry that he felt abandoned by me, even though his caseworker and I did our best to explain to him what happened to me.
I miss this kind of in-person interaction. It made me feel as if I were making life better for someone I cared deeply about. As is true for many people who are housebound by chronic pain and illness, I’ve turned to the internet. I’m grateful it has allowed me to continue to try and make a positive difference in people’s lives.
Puttering around the house, doing my favorite things.
I loved to garden and occasionally still do some light pruning. Other than that, the little gardening I’m able to do is confined to pulling weeds — because they’re what inevitably catch my eye when I go outside.
I also loved to paint rooms. Perhaps this was a holdover from my days as an undergraduate in college when I painted houses as a summer job. This was one of my joys as a homeowner: paint a room one color and then… paint it another! Now I’m in a bedroom that badly needs painting — as well as a new rug — but I haven’t the ability to do what needs to be done; the preparation and then the disruption would be more than I can handle. The rug can be replaced… but can I handle being displaced? We’re considering it.
My health not being the elephant in the room.
We’ve all had the experience of being with others when there’s an issue looming large; everyone is aware of it but nobody wants to talk about it. I miss visiting with people without the state of my health being that issue.
This can get complicated and stressful for me. For starters, I never know if others will express an interest in how I’m doing or in what treatments I’m trying. Nor do I know whether they’ll even acknowledge my condition with a simple “I’m sorry you’re sick.” But if they don’t mention my health, I can’t know if it’s because they’re uncomfortable raising it or if it’s because they’re assuming I’ll bring it up if I want to talk about it.
Any way I look at it, I miss being around others without constantly wondering whether the issue of my health will become a topic of conversation and, if it does, how best to handle it.
The Zen proverb that starts this chapter says, “The obstacle is the path.” For the chronically ill, longing for the life we can no longer lead can feel like an insurmountable obstacle. Sometimes the things I loved to do before I got sick feel as if they’re dangling in front of me like carrots on a stick.
Looked at another way, however, this is my path. As I noted at the beginning of this chapter, when I’m caught in a painful longing to have my pre-illness life back, I don’t try to force it away. But I do see it as an opportunity to practice being at peace with what I have right here, right now, even if it’s not what I ordered up. I don’t always succeed in this practice, but when I do, I know I’m resting in the peace of equanimity.
24
The Uncertainty of It All
Simply be present with your own shifting energies and with the unpredictability of life as it unfolds.
— PEMA CHÖDRÖN
I’VE MADE repeated references in this book to one of the realities of the human condition: impermanence. It’s a universal law, recognized in spir
itual and scientific traditions alike. Everything is in flux from moment-to-moment, including our physical and mental states.
I like to think of uncertainty as a corollary of the universal law of impermanence. If everything is impermanent, then our lives and the people in it are uncertain — as well as unpredictable.
It’s natural for us to wish things were otherwise. If we knew with certainty how each day was going to unfold, we’d feel safer and more secure. But all our wishing won’t make it so. Uncertainty is a fact of life, whether we live in a third-world country or in the most advanced scientific and technological environment, and whether we’re struggling to make ends meet or living in the lap of luxury.
For the chronically ill, life’s unpredictability can feel as if it’s increased exponentially. Indeed, perhaps the hardest thing about being chronically ill is the extra dose of uncertainty it brings to almost every aspect of our lives.
Uncertainty about how we’ll feel on any given day… or even at any given moment.
For the chronically ill, not knowing how sick we’ll feel or how much pain we’ll be in makes it difficult to make plans. Because my symptoms can change at any moment, even after I’ve woken up, I don’t know how I’ll feel as the day progresses. Trying to plan ahead by resting for days in advance of an event doesn’t necessarily help; I still may not feel good enough to participate when the day arrives.
At times, the unpredictability of my symptoms has been such a source of unhappiness that I’ve directed angry frustration at myself, as though it were my fault that I couldn’t control the moment-to-moment course of this illness. I’ve been working on shedding this self-blame by reminding myself that whatever symptoms happen to be present at the moment are due to the vagaries of the illness.
How to Live Well with Chronic Pain and Illness Page 14
