How to Live Well with Chronic Pain and Illness

by Toni Bernhard

  Caregivers can be reluctant to do enjoyable things for themselves. They may feel that if they don’t treat taking care of you as a full-time commitment, they’re falling short as a caregiver. They may also feel that they shouldn’t be doing something that’s fun if you can’t join in. But I want my husband to enjoy himself. It’s good for his mental and physical health, and it makes it easier for me to feel okay about how much of his time is devoted to my care.

  I hope you’ll encourage your caregiver to go to dinner with a friend, take in a movie, pursue a hobby, or even just read a good book. If your caregiver brushes aside your suggestions, let him or her know that it would be good for both of you. Say something like “This is what I want for you. Not only that, but I feel better when I know you’re enjoying yourself.”

  If your caregiver is housebound much of the time because of the need to be close by, help him or her find new ways to do old things. For example, a caregiver can stay connected to other people through Skype or FaceTime. My husband and our granddaughter Malia love sending each other photos or short videos through Snapchat.

  It’s good for both of you if your caregiver’s life is not solely about caring for you. With compassion in your heart for all he or she does for you, take the lead in encouraging your caregiver to have some fun.

  Be sure you’re not taking your caregiver for granted.

  Mindfulness is helpful here. Are you paying careful attention to everything your caregiver does for you? I’ve noticed that I can get complacent. I’ll passively accept a meal that my husband has cooked, or I’ll mumble “thanks” when he brings me a prescription he’s picked up from the pharmacy — a trip he wouldn’t have had to make were I healthy.

  When I realize that I’m beginning to take him for granted, I immediately tell him how much I appreciate him. If he shrugs it off like it’s no big deal, I respond by ticking off his duties, one by one, to remind him of the tasks he’s had to take on. I want to be sure he remembers that not all spouses or loved ones have the extra responsibilities he does. I certainly don’t have them!

  Every little thing your caregiver does for you is a gift. You can return that gift by making sure your caregiver knows how much you value what he or she does for you — day in and day out.

  Remind your caregiver that your health might improve.

  I’ve improved a bit since the early years of my illness. Although I still can’t travel, I am able to spend more time out of the bedroom. Sometimes I’m able to go a café in the afternoon or out to an early dinner. By contrast, those first few years, I was completely bedbound and unable to socialize with family or friends when they came over.

  I often have to remind myself how much worse those first years were; it’s so easy to see the glass as half empty as opposed to half full. These small changes in my health have made my husband’s life easier and more enjoyable. For this reason, it’s good to remind your caregiver that it’s possible your condition might improve. As I like to put it: sometimes the universal law of impermanence can be our friend.

  Help your caregiver accept your new life and even see the positives in it.

  Whether or not your health changes for the better, you and your caregiver can work on making peace with your life as it is at the moment. You could gently remind your caregiver that people’s lives sometimes take unexpected and unwelcome turns. Life is uncertain and unpredictable for everyone. Even though this is not how both of you hoped to be spending these years, it’s what the two of you have. The more you can accept it without bitterness, the more peace of mind you’ll find.

  My husband and I have an exchange that I think of as our little equanimity practice. Once in a while, I say to him, sincerely but matter-of-factly, “I wish I weren’t sick”; he then says to me in the same neutral, nonaversive tone, “I wish you weren’t sick.” Then we get on with our lives — however that life is at the moment.

  You can also make a conscious effort to consider the unexpected blessings this new life has brought to both of you, such as the opportunity to spend more time together or the chance to take up a new hobby. Maybe it’s been your ticket out of the rat race! Whatever benefits you can think of, share them with your caregiver and, together, treasure and nourish them.

  Don’t let red flags about your caregiver’s own health go unheeded.

  It’s not unusual for caregivers to ignore any symptoms they develop so long as those symptoms aren’t as severe as yours. Please don’t hesitate to push your caregiver to seek medical attention when you think he or she needs it. And when your caregiver is being treated for something, even if it’s minor, don’t forget to ask how he or she is doing. Since becoming my caregiver, my husband has never had so much attention from me over a stubbed toe!

  If You’re the Friend or Family Member of a Caregiver

  Be ready to talk about things that aren’t related to his or her caregiver duties.

  Of course, if a caregiver wants to talk about the difficulties he or she is facing with caregiving, be a good and compassionate listener. Most caregivers, however, will also welcome the opportunity to talk about something other than their loved one’s health. I know my husband appreciates it when people raise other subjects.

  I’ve learned from him that my ongoing illness can be a conversation killer. When he’s with other people and the state of my health comes up, after he reports “She’s about the same,” no one feels it would be appropriate to say “How about those Giants!” The ideal way for people to respond would be to say something like “Please give Toni my best” and then change the subject to something of mutual interest. Most caregivers would be relieved to engage with someone on a topic — almost any topic — that’s not health-related!

  Invite a caregiver to do something with you, even if it’s an activity you used to do with the caregiver and the person in his or her care.

  My husband and I have noticed that people will invite a single friend over for dinner or to join them in an activity, and yet they rarely invite a spouse or a partner who is a caregiver. This has the effect of increasing a caregiver’s social isolation. People have good intentions. Often, they simply assume that he wouldn’t want to come without me. Other times, they’re concerned that I’ll feel bad that I’ve been left out.

  If you’re a friend or family member of a caregiver, please include him or her, particularly on special occasions. Let the caregiver know that you’re aware that he or she may have to come alone, and that it’s fine with you. Recently, a friend of ours invited my husband to her baby shower. How thoughtful!

  Offer specific help.

  This suggestion also appears in the chapter on what the chronically ill hope others will say to them. As is true for a person who is chronically ill, a caregiver is unlikely to follow-up on an open-ended offer such as “Call me if there’s anything I can do for you” or “I wish there were something I could do to help.” On the other hand, if you’re going to the hardware store, a caregiver would welcome a call in which you ask if there’s anything you can pick up.

  Even better, offer to give the caregiver a break by taking care of his or her children for a few hours or by offering to do one of those seemingly minor tasks that add up fast, such as mowing the lawn or washing the car.

  Studying my husband as caregiver, I’ve learned that many of the difficulties we face overlap: we’ve both become isolated socially; we’ve both lost each other’s company as travel companions (as I’m writing this, he’s alone in the car on the six-hour drive to visit our daughter’s family for the weekend); we both face a lack of understanding from others about the effects of chronic illness on everyday life; we’ve both spent inordinate amounts of time in health care facilities; we both face uncertainty about what will happen if he should need someone to care for him.

  In addition to the challenges they share with the person in their care, caregivers face their own set of stressors. They must live with the frustration and helplessness of not being able to make their loved one better. They’ve been thru
st into the role of patient advocate in the medical system, a role for which they have neither training nor expertise. They often have to take over the running of the household.

  Finally, they’re the ones who see their loved one at his or her very worst. When I’m in the company of others, I do my best to appear energetic and socially engaged. This takes adrenaline, and the devastating after-effects this can have on me are for my husband’s eyes and ears only. When we’re alone again, it’s he who must deal with the physical and emotional fallout from my having overextended myself around others. I’m positive that this is a familiar scenario to most of you who are reading this.

  Caregivers are in need of care too. They know when a person is paying attention to their concerns and their needs, and they appreciate it greatly. Reaching out with compassion to ease their burden can improve the quality of life for these unsung heroes in the world of the chronically ill.

  Feeling heard and understood is as important to a caregiver as it is to the person in his or her care.

  V. Isolation and Loneliness

  26

  Quotations and Reflections on Loneliness

  Only the lonely know the way I feel tonight.

  — ROY ORBISON

  CHRONIC ILLNESS can bring with it a dramatic change in life-style. It did for me. Before I got sick, I spent my days in the company of others. Sometimes I had over a hundred students in my classroom. My husband and I were active in our community, attending social and cultural events almost every weekend. Then I got sick, and suddenly I was alone much of the time. I’m still working on how to be alone without being lonely.

  I take comfort in Roy Orbison’s lyrics. They’re a reminder that when loneliness descends on me, at least I know there are others who understand how I feel; that, in itself, makes me feel less lonely. I’m hoping these quotations and reflections will help you feel more connected to others and will point the way toward learning to be alone without feeling lonely.

  Language… has created the word “loneliness” to express the pain of being alone. And it has created the word “solitude” to express the glory of being alone.

  — PAUL TILLICH

  When I first saw this quotation, I was confused because I’d always equated being alone with loneliness. I’ve since learned that Tillich is right. Being alone, in itself, is a neutral state — neither negative nor positive. It becomes emotionally painful when we add to it an intense longing for circumstances over which we have no control to be different than they are. When that longing goes unsatisfied, being alone turns into Tillich’s painful loneliness.

  If we open our hearts and minds to look for what we might treasure about being alone, it can become Tillich’s glorious solitude. The chapters in this section explore how we might do this.

  The real loneliness is living among all these kind people who only ask one to pretend.

  — EDITH WHARTON, The Age of Innocence

  Everyone has had the experience of being in the presence of “kind people who only ask one to pretend”; the chronically ill are often expected to pretend to be healthy. I used to be hurt when I perceived that the people I’m closest to were asking this of me, and sometimes I’d feel disappointed and even angry at them once I was out of their company. Now I try to see it from their point of view. I believe that their heartfelt wish for me to be healthy can be so overwhelming at times that it leads them to pretend that I am healthy… and to expect me to pretend with them.

  Music was my refuge. I could crawl into the spaces between the notes and curl my back to loneliness.

  — MAYA ANGELOU

  I love Angelou’s image of curling her back to loneliness — nestling into the spaces between the notes until the fit was so snug that music was the only thing that could get through to fill her heart.

  Your refuge need not be music. It can be anything that brings you comfort — a cuddly pet or even a special pillow. The audiobooks of E. M. Forster and Alexander McCall Smith serve that purpose for me. The narrators are like old friends; I feel cozy and protected in their presence. I curl my back to loneliness by listening to the same books over and over, just as Angelou must have done with her favorite pieces of music.

  Remember we’re all in this alone.

  — LILY TOMLIN

  I can always count on Lily to bring a smile to my face and take me out of my self-focused thinking.

  I felt a haunting loneliness sometimes, and felt it in others… young clerks in the dusk, wasting the most poignant moments of night and life.

  — F. SCOTT FITZGERALD, The Great Gatsby

  Fitzgerald is reminding us that loneliness is not always confined to the bed or the house — or even to being alone. Some people who work all day around others feel terribly lonely. We shouldn’t assume that loneliness is the prerogative of those who are isolated by chronic illness or other circumstances.

  Inside myself is a place where I live all alone and that’s where you renew your springs that never dry up.

  — PEARL S. BUCK

  Had I not become chronically ill, I might never have understood what Pearl S. Buck was saying; before I got sick, I was around other people most of the time and rarely paid attention to what was going on inside me. Now that I’m alone a lot, if I turn my attention inward and listen carefully, I can hear the trickling of that spring — fresh and full of promise. It is, indeed, a moment of renewal, one in which I’m content to watch — in the words of the poet Mary Oliver — my “one wild and precious life” unfold.

  Loneliness adds beauty to life. It puts a special burn on sunsets and makes night air smell better.

  — HENRY ROLLINS

  I can’t yet claim that loneliness adds beauty to my life, but I have experienced a bittersweet quality to it. Perhaps this is what Rollins is referring to. When my husband is away for several days or weeks, loneliness can settle in. It’s bitter in that I’d love to share with another person the sight of the clouds setting up for a beautiful sunset, as is so often the case outside my living room window. It’s bitter in that it would feel good to take in the aroma of the night air with someone by my side. Yet, when I’m alone, there’s also a sweetness in the heightened sense of awareness of what’s going on around me, a sweetness that brings with it appreciation of that “special burn” and that aroma.

  Lonely is a funny thing. It’s almost like another person. After a while it will keep you company if you let it.

  — ANN PACKER

  I came across this passage several years ago while listening to the audiobook of Ann Packer’s novel The Dive from Clausen’s Pier. I almost gasped when I heard it because it opened my heart and mind to a possibility I’d never considered. I’ve carried those few sentences in my heart ever since. I hope they bring you as much comfort as they’ve brought me. Her words have taught me not to resist loneliness and not to feel averse to it. Instead, I treat it as a familiar guest who shows up from time to time. I let it keep me company, knowing that it will eventually go on its way, making way for glorious (or at least bittersweet) solitude.

  27

  Healing Loneliness through Mindfulness

  The worst loneliness is to not be comfortable with yourself.

  — MARK TWAIN

  EARLY ON during my tenure as the dean of students at the law school, I discovered how nourishing mindfulness practice could be when I was alone.

  With the best of intentions, people often wanted to do business over lunch. But I knew that even if I enjoyed their company, meeting in that way would still be work. Lunchtime was my only opportunity during the day to put aside the pressures of the job. So I told my assistant not to make appointments between 11:30 a.m. and 1:00 p.m. If someone asked to discuss business with me over lunch, I politely declined and arranged to meet him or her during non-lunch hours.

  I found a nearby café that neither law students nor my colleagues frequented, and I began a daily outing. Except on days when a noon event kept me at the law school, I left the building at 11:30 a.m. I’d find the dirt
path through the campus arboretum that led to the café. I’d walk the path slowly and mindfully, paying careful attention to the physical sensation of each foot as it touched the ground, noticing the trees and bushes around me, listening to the birds, taking in nature’s aromas.

  For the six years I was in the dean’s office, I took this same path. I bought an oversized umbrella and rain boots so I could go on my jaunt in the pouring rain and the blustery wind — much to the dismay of some of the office staff! My awareness of impermanence was heightened because, with mindfulness as my guide, the walk was different every time. I could see the changing seasons on display in the plants and wildlife around me.

  Seeing me from a distance, the café workers would have my espresso drink ready by the time I got to the door. Once inside, I continued my mindfulness practice by “letting the world speak for itself,” to borrow a phrase from Pema Chödrön. I didn’t read or think about work. I just sat and ate, watching the hustle and bustle of café life at lunchtime. Then I walked back to the law school along the same dirt path. I’d return to work relaxed and rejuvenated from what I came to think of as my daily mindfulness outing. I was alone, but I never felt lonely.

  From “alone” to “lonely.”

  Being alone is a neutral state. It’s just the fact of being by yourself. By contrast, loneliness is a painful emotional state, often accompanied by feelings of rejection, sadness, and self-blame. When illness forced me to leave work and take up residence in my bedroom, suddenly, I didn’t like being alone — at all. Now I wasn’t just alone; I was lonely. And it was the “worst loneliness,” to which Mark Twain refers, because I wasn’t comfortable with myself anymore.

  I didn’t feel rejected, but I was terribly sad and plagued by self-blame. I was convinced that my loneliness was proof of some character flaw. It took me several years to stop judging myself negatively for feeling as I did. Only then could I begin to bring caring attention to the loneliness. I started by giving up my resistance to it. In other words, I made room for it in my heart, even though it was an unpleasant feeling. Without blaming myself for its presence, I simply noticed how loneliness felt, including the sadness that accompanied it. To my surprise, when I allowed myself to feel the pain, the loneliness lost its tight-fisted grip on me. This gave me some breathing room and, in that space, I could begin to take a closer look at this emotion.