How to Live Well with Chronic Pain and Illness

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How to Live Well with Chronic Pain and Illness Page 17

by Toni Bernhard


  Bringing mindfulness to loneliness.

  It’s not uncommon for people to suffer from loneliness. Those who work around other people can feel lonely in their presence. Others may have loneliness descend on them as soon as they get home. If you’re not a stranger to this painful emotion, becoming familiar with how it operates in your life can help you address it skillfully.

  Before you begin to investigate loneliness, try to let go of any feelings of self-blame. A good way to do this is to remind yourself that everyone gets lonely at times. It’s not a sign of weakness. It’s just a mental state that’s arisen due to conditions in your life.

  Once you’ve accepted the feeling of loneliness — enough that you feel comfortable in its presence — you can begin to examine it by asking yourself some questions. Do certain experiences trigger it, like talking to others about their plans? Is it worse on certain days or at certain times of the day? How much is the loneliness the result of your desire to be with others, and how much is due to your not feeling comfortable with your own company?

  You can continue this investigation by asking if you’re telling yourself exaggerated and distorted stories, such as “I’ll always be lonely” or “No one else I know is lonely.” The former is highly unlikely to be true. As for the latter, how would you know? We rarely know the inner life of other people.

  Becoming mindful in this way of what factors give rise to loneliness in your life, and learning to question the validity of the stories you tell yourself about it, makes it more manageable.

  Then, with an attitude of kind benevolence toward yourself, let the loneliness be and allow compassion to arise over any suffering you’re experiencing. Find just the right words by drawing on what your investigation has revealed to you about the loneliness you’re feeling. Silently or softly, repeat phrases such as “It’s hard to be by myself after hearing about everyone else’s plans”; “It’s painful to be alone on the weekends”; “It’s not my fault that I’m lonely.”

  As you say these words, you might stroke one arm with the hand of the other. I do this often as a way to deepen self-compassion. Gently hold the loneliness in mindful awareness in this way, while at the same time also maintaining awareness that, like all mental states, loneliness is subject to change and so is not a permanent feature of who you are.

  Alone in my bedroom, practicing mindfulness in this way, I gradually made peace with loneliness. Recall from chapter 23 the words of Thich Nhat Hanh: “Awareness is like the sun. When it shines on things, they are transformed.” Sure enough, over time, the loneliness I was feeling transformed from a painful mental state to the neutral fact of being by myself. This opened the door for me to explore ways in which being alone might enrich my life.

  Being alone heightens my awareness of the world around me.

  Through mindfulness, I rediscovered what I’d known during those lunchtime outings: when I’m by myself, my powers of observation are more keen. In a passage from Emma, Jane Austen said this about Emma as she looked out her window at the small happenings in the village street below: “A mind lively and at ease, can do with seeing nothing, and can see nothing that does not answer.” I’ve learned to do with seeing and hearing beauty in the small happenings in my bedroom: a spider, dropping from the ceiling on a silken thread, only to stop a foot above the bed; a fly, dashing around the bedroom like some crazy freeway driver; the sound of the starlings in the elm tree right outside the bedroom window.

  The spiritual teacher Ram Dass said, “The quieter you become, the more you can hear.” I was reminded of these words when a woman wrote to me saying that illness had forced her to trade a life of activity for one of stillness, but that when she uses that stillness to observe her small world closely, “it almost seems like an even trade.”

  Being alone gets my creative juices flowing.

  “I dwell in possibility,” wrote Emily Dickinson. I’ve discovered that being alone opens possibilities in my mind because it facilitates what I think of as creative daydreaming. My mind wanders freely, allowing ideas to come and go until something becomes the seed for the next piece of writing or a new crochet project.

  In addition, although I’m not a poet by any means, I’ve discovered that writing short poems when I’m alone is a satisfying creative outlet. I include this one just to give you an idea of what you can do:

  Hot summer sun

  coming through the window.

  Please don’t melt my laptop!

  I wrote it one morning when I forgot to put the shades down in my bedroom and noticed that the summer sun was shining directly on my computer. I put my hand on the keyboard, and it was very hot. I experienced a momentary scare (after all, my laptop is where I do all my writing!). Then, I put the shade down, sat back on my bed, and wrote this poem.

  Being alone allows me to dictate the rhythm of the day.

  When I’m alone, I live at my own rhythm. Some people do better with a fixed schedule, but, for me, since I never know how I’m going to feel physically at any particular time on any given day, not having a set timetable is beneficial to both my mind and body. I might eat dinner for lunch or breakfast for dinner. And, of course, there’s no set time to engage in creative daydreaming. As an added bonus, when I’m doing something because it best fits the rhythm of my day, I’ve discovered that I do it with more intention, which means I’m giving more careful attention to the present moment.

  Being alone makes me more attentive to others when I’m not alone.

  Since I’ve been isolated by illness, when I do see people I care about, I’m much more aware of everything about them — from their outer appearance, to what it is I enjoy about their company, to what might be troubling them. I think I’m a better friend. I’m more attentive to strangers, too. People watching has become a challenging practice — to observe without letting on that I’m observing! In short, I feel as if I’m seeing friends and strangers afresh, with new eyes.

  Being alone opens the door to spiritual exploration.

  Being alone offers the opportunity to nurture the inner life, whether through prayer or meditation or cultivating compassion for all beings. In the quiet space of isolation from the world outside, we can reflect on life, including its wonders and its mysteries.

  In some sense, all of us are alone, because no one experiences our lives for us and no one encounters our particular mixture of joys and sorrows. Reflecting on this can help us appreciate the uniqueness of the life that each of us has.

  And yet, although in some sense we are all alone, we are also interconnected and interdependent with everything and everyone around us, from the air we breath, to the food we eat, from the people we’re close to, to the people we’ll never meet but who affect our lives every day. My spiritual exploration often takes the form of a practice called tonglen because it heightens my awareness of this interconnectedness of all life.

  Tonglen is a unique Tibetan compassion practice. In many meditation practices, we’re instructed to breathe in peaceful and healing thoughts and images and to breathe out any suffering we’re feeling. By contrast, in tonglen, we do the opposite — we breathe in the suffering of others, and then as we breathe out, we offer whatever measure of kindness, compassion, and peace of mind we have to give, even the slightest bit.

  I practice tonglen when I’m alone to help me feel connected to people, no matter what their circumstances and no matter where they live on the planet. I call to mind people whose lives, on the surface, seem so different from mine — a poverty-stricken family in a third-world country, a single mother of three in a crime-ridden neighborhood in the US, people living in war zones. As I picture them in their environment, I breathe their suffering into my heart. Then, on the out-breath, I release that suffering and offer to them whatever kindness, compassion, and peace of mind I have to give at the moment.

  Tonglen makes me acutely aware that, although everyone’s life is a unique mix of joys and sorrows, we are more alike than we are different. We all experience difficu
lties and we all share the same hopes and dreams for ourselves and our loved ones.

  I hope you’ll try tonglen. If you’re not comfortable breathing in other people’s suffering, just breathe normally and call to mind the people with whom you wish to connect. Then, in whatever way feels natural to you, send them thoughts of kindness and compassion. You need not breathe in others’ suffering in order to feel connected to them.

  I still feel lonely at times. When this happens, I don’t resist it. I regard it as a familiar guest who wasn’t invited but still shows up periodically, making itself at home for a while. Using mindfulness practice, I acknowledge the loneliness, hold it gently in my awareness, and treat myself with compassion for any sadness I’m experiencing.

  Zen teacher Dainin Katagiri said, “One can be lonely and not be tossed away by it.” And so I open my heart to the loneliness and let it be, knowing that the sweetness of being alone without feeling lonely is waiting in the wings.

  28

  Coping with Isolation During Holidays and Other Gatherings

  The heart that breaks open can contain the whole universe.

  — JOANNA MACY

  ONE OF THE toughest challenges of being chronically ill is the necessity of adjusting to a different way of spending holidays and other special gatherings, such as weddings. After I became chronically ill, the activities that had once brought me the greatest joy suddenly became the very activities that exacerbated my symptoms. Special gatherings are among those events.

  We want to contribute fully to the festivities — helping with the planning, the cooking, and even the cleanup. On the other hand, we also know that even limited participation is likely to trigger a flare of symptoms that will result in “payback” later. In addition, many people who are chronically ill have compromised immune systems, making it hard for them to fight infections. Close gatherings, especially during the winter months, increase the risk of catching a cold or the flu. This can leave a person bedbound for weeks or months and, in some cases, hospitalized.

  I’ve had to accept that most holidays and other special gatherings are out of reach for me now. However, one of them — Thanksgiving — I do my best to still celebrate with others. On Thanksgiving, our son Jamal and his family, my brother-in-law and sister-in-law, and a couple of close friends come for a feast that my husband cooks. Invariably, when everyone arrives, I start out with a burst of energetic socializing. I wasn’t this way before I got sick, so I’m positive this is a reaction to the amount of time I spend alone. It’s as if I’m in a panic to get in everything I want to tell everyone before, like Cinderella, my time is up.

  I’m sure I’d be able to stay at the gathering longer if I paced myself. To this end, I always give myself a little lecture before everyone arrives: “Breathe deeply, move slowly, and don’t chat up a storm.” I’ve yet to be able to stick to my plan; once I join the festivities, it’s too hard to half-participate. As a result, I overdo it until I feel as if I’m about to drop unless I lie down. Imagine having the flu when people come over for Thanksgiving. You’d only last so long before you’d have no choice but to excuse yourself.

  And so inevitably the time comes when I have to leave the gathering and retreat to the bedroom. Sometimes I’m prompted by my husband who watches out for me, even when I’m not watching out for myself. (See chapter 1, where I suggest that everyone try to find such an ally.)

  Once in my bedroom, I face the toughest challenge: coping with the sadness and sorrow I feel at being isolated from others. One reason it’s a challenge is that my “retreat” tends to coincide with the time when socializing has become easygoing and mellow. When people first arrive at a gathering, it’s not unusual for the conversation to be polite and guarded for a while — except for little “burst of energy” me, of course! But after a few hours and some good food and drink, everyone is relaxed. By the time I’m forced to excuse myself, I retire to the sounds of warm conversation, spiced with peals of laughter. It’s the very moment I want to be with everyone.

  When I get to my bedroom, I always think, “If only the gathering were starting right now, I could be there for the best part.” This reflection used to be accompanied by quiet sobbing — quiet, so no one would hear me. Over the years, though, I’ve come up with some techniques to help ease the sadness and sorrow that arise when I’m forced to isolate myself from others. I hope they’re helpful to you.

  No blame!

  As I’ve noted in earlier chapters, self-blame is a common reaction to becoming chronically ill. You may think it’s your fault that you’re sick or in pain. You may blame yourself for having to skip a gathering or leave it early. Or you may feel as if you’re not doing your fair share to contribute to the festivities.

  This last source of negative self-judgment — the feeling of not carrying my weight — can still pop up for me at Thanksgiving. My husband does the shopping and the cooking. Everyone who comes brings more food, and my son and daughter-in-law set the table and do the dishes afterward. I consider it a major accomplishment when I’m able to contribute a pumpkin pie, although even with this relatively simple task I’ve had to make adjustments; my favorite part of pie-making was always preparing the crust, and I’ve reluctantly had to let that go. No one seems to mind that it’s a store-bought crust, but I secretly feel that my pie is not the real deal. That’s a bit of “no blame” I’m still working on.

  Learning not to judge myself negatively for becoming chronically ill has been a tremendous relief. Even more, the realization that I can be the way I am without blame has brought with it a newfound sense of freedom. For all of us, the reward for setting aside self-blame is that we can begin to treat ourselves with compassion. Self-blame and self-compassion are incompatible. I hope that all of you who are chronically ill will make the commitment to replace the former with the latter.

  Practice self-compassion.

  When being isolated makes me sad, I don’t resist it. Resisting painful emotions tends to strengthen them. So the first thing I do is to gently acknowledge that sadness is present. Next, I think of specific words that address, with compassion, how I’m feeling at the moment; then I actually speak those words to myself.

  I hope you’ll try this. Pick some phrases that fit your particular circumstance and repeat them silently or softly to yourself: “It’s so hard to leave the holiday gathering right when the conversation was getting good” or “I’m so sad to be alone in the bedroom.” Repeat your phrases, perhaps while stroking one arm with the hand of the other. Stroking my arm or my cheek with my hand never fails to ease my emotional pain.

  If speaking to yourself in this way brings tears to your eyes, that’s okay. They’re tears of compassion. To quote Lord Byron, “The dew of compassion is a tear.”

  Cultivate joy for others.

  I also work on feeling joy for those who are still gathering together. I think about the good time everyone is having and try to feel happy for them. Buddhists call this mudita — feeling joy for other people who are happy. Initially, when you try to feel joy for others, it’s not unusual for envy to pop into your mind instead. This is a perfectly understandable reaction to having to miss out on so much. If this happens to you, remember, no blame! Simply acknowledge with compassion that you’re feeling envious, and when you’re ready, try again.

  When I practice feeling joy for other people, it helps if I picture their smiling faces and (unless I’m hearing it “live” from my bedroom) imagine the sound of their good-hearted conversation and laughter. Eventually, even though I may still be sad, I’m also able to feel happy for them. And once in a while, something special happens: I begin to feel joy myself, as if everyone is having a good time for me.

  Stick to describing your emotions in a neutral fashion.

  In chapter 11, “Mindfulness Practices That Address Physical Discomfort,” I described a practice that I adapted from Byron Katie in which you ground yourself in the present moment by neutrally describing what’s happening in your life right now.
r />   This mindfulness practice is also helpful when feelings of sadness and sorrow accompany being alone. Describing isolation in a neutral fashion can keep those painful emotions from intensifying, and it also serves as a reminder that what you’re feeling is a temporary mental state; these emotions have arisen and they will pass.

  To try this practice, the next time isolation triggers mental suffering for you, describe the experience of being alone without using emotionally charged words. Instead of saying “Lying on the bed, feeling unbearably isolated,” simply say “Lying on the bed, feeling isolated.” Words like “unbearably,” “dismally,” “intolerably,” and “miserably” add an emotional punch that’s likely to intensify the mental suffering you’re experiencing.

  In addition, these emotionally charged words can lead you to start spinning stressful stories, such as “I’ll be left out of things for the rest of my life” or “No one cares that I’m in the bedroom by myself.” These stories — which we tell ourselves and then believe without question — only make matters worse. There’s no rational reason to believe you’ll be left out of things for the rest of your life or that no one cares about you. The sadness and sorrow you’re experiencing are not built-in, permanent features of who you are. They’re just what you happen to be feeling at this moment.

  This practice may require you to change your habitual way of talking to yourself, but learning to describe your present-moment experience in a neutral way enables you to hold more lightly any emotional pain that accompanies being isolated. Then, treating yourself with compassion, you can wait until the painful feeling passes out of your mind.

 

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