If you find yourself about to speak divisively or abusively to others, a good antidote is patient endurance. Cultivating patience slows us down, making us more reflective. This enables us to check our speech before we release it into the world. (For a discussion of how to respond wisely to insensitive and hurtful comments, see chapter 9 on equanimity.)
Engaging in speech only when it is true, kind, and helpful is a tall order. Some days I’m relieved if I can just meet a couple of Ryokan’s goals — not speaking too much or in an obnoxious manner! But then I remember that the Buddha considered wise speech to be an indispensable practice on the path to liberation and freedom. With that in mind, I redouble my effort to communicate wisely with others.
17
Connecting with Others and Appreciating Solitude
I never found the companion that was so companionable as solitude.
— HENRY DAVID THOREAU
THE ISOLATION that comes from being housebound can be hard to bear. It’s even harder for people who must spend most of their time in bed, or must suddenly take to bed in spite of plans to be with others. The Buddha placed a high value on being with others in community because it supports people personally as well as on the path to awakening or liberation. Readers of any faith will appreciate its value.
Before I got sick, I was active in my local community. I also co-hosted a weekly meditation group with Tony. We used a local meeting hall every Monday night. At least once a month I would lead the sitting and then give a talk. We also hosted a monthly group at our house in which we discussed Buddhist readings that Tony or I had chosen and distributed for that month. The reading materials were the starting point for a spirited and often humorous two hours of reviewing our lives since we last met. This was spiritual community at its richest for me. Tony still hosts this group at our house.
I also frequently attended daylong meditation retreats led by teachers from all around the world. And twice a year I attended a ten-day silent meditation retreat, led by many of the teachers I mention in this book. When I got sick, I could no longer participate in these activities, even though the Monday night meeting hall is three blocks away and the monthly group is a room away — although if I sit off to the side and mostly listen, I’m sometimes able to join the monthly group for an hour or so. In addition to losing this precious source of spiritual support, I had to adjust to the social isolation that goes hand and hand with the illness.
Alone and Cut Off
“It’s hard to distinguish between the effects of my illness and the effects of isolation,” wrote a member of an online support group for people diagnosed with an illness similar to mine. I, too, have days when the isolation feels like the illness itself. People who are housebound are not just isolated from one-on-one personal contacts; we are often isolated from nature and even from the warm feel of a friendly crowd. Our best bet to see the changing seasons is on the drive to and from doctor’s appointments, but these are often stress-filled outings. Similarly, our best bet to be in a crowd is in the waiting room at the doctor’s office — not the most comfortable or uplifting of settings. I remember reading a blog entry from a woman with ME/CFS in which she said she went to get a blood test a week early just to be around people.
The subject of friendships can be a painful one for the chronically ill. The sudden lack of day-to-day socializing was the hardest adjustment I had to make — even harder than losing my career. It felt as if there were a hole in my heart that was once filled with the sight and sounds of other people. This chapter was the last one I wrote because I was avoiding the difficult task of putting into words the pain of coming to terms with the loss of so many friends. On an Internet site for the chronically ill, one person put it this way: “Friends slipped away slowly.” Another said, “All my friends have gone missing.”
As I was preparing this book, I was looking through the contents of a folder and came across a note I wrote in June 2002. It caught my attention because, since becoming sick, I’ve read about other people having written similar notes to family and friends after being diagnosed with a chronic illness that is invisible to others — arthritis, lupus, cancer, diabetes, heart disease, fibromyalgia. After writing the note, I copied it, attached two essays from a book edited by Peggy Munson called Stricken: Voices from the Hidden Epidemic of Chronic Fatigue Syndrome, and sent the packet to four close friends:
I’m sorry I couldn’t join all of you for lunch today as I’d planned. Unless people have known someone in my situation, it must be hard to understand why I can’t do everything since I can do some things and since I seem to look fine.
So I thought I’d share a couple of essays. One of the women is still working, one is not. Both have been diagnosed with chronic fatigue syndrome although, as with me, the doctors don’t really know why they continue to be sick. Their stories are different from mine, but there are more similarities in our day-to-day experience than there are differences.
I don’t need you to do anything after reading these essays; I’ll just feel better knowing you’re aware of what’s going on with me right now. See you soon.
Love,
Toni
None of these friends are a presence in my life now. And so it goes for many of the chronically ill. As I said earlier, Byron Katie’s inquiry has helped me cope with the loss of so many friends, but I vividly remember how I felt when I so carefully composed that note in 2002. I was terrified that a lot of my friends would “go missing.” And that turned out to be the case.
Chronic illness takes its toll on friendships for several reasons. We become undependable as companions, often having to cancel plans at the last minute if it turns out we can’t get out of bed on the day of a scheduled commitment. Even if we can visit, it may only be for twenty minutes and that may be too short a time for people to commit to. (Their drive to see us may be longer than the time we’re able to socialize.) Some people are uncomfortable being around those who are chronically ill. Some people no longer know what to talk about around us, believing that sharing stories about their activities will make us feel bad. And, living in the world of the sick, we gradually have less and less in common with those with whom we worked and played.
Knowing these reasons doesn’t make the isolation any less painful an adjustment as we watch people disappear from our lives one by one, some after dozens of years of friendship. On top of this painful personal experience, we also encounter all the “healthy living” advice that warns us that maintaining an active social life enhances both mental and physical health. And so worry is added to isolation.
The Aloneness Spreads
Caregivers may also find themselves socially isolated because their loved one can’t accompany them outside the house or apartment. Tony had a first taste of that lifestyle change on our trip to Paris, unaware it was to become a permanent feature of his life. “I’ve lost my companion out in the world,” he’s often said to me. The loss is more profound than not being able to go to dinner or the movies together. A lot of the sadness comes from those moments of lost intimacy, such as the cherished drive home from a party when Tony and I would have fun debriefing each other about the interactions we’d had — who we enjoyed chatting with, who we hoped to never see again.
Tony and I were fortunate to be best friends as we ventured out into the world. Now, in regard to social activities, he’s housebound most of the time, too. People who would invite us over as a couple rarely invite Tony over by himself. This is a common experience for the partner of a chronically ill person. It’s an odd social phenomenon since, when a person is single, couples have no hesitation including him or her in their social activities. Perhaps people think that Tony wouldn’t want to come by himself or that I’d feel bad being left behind. We don’t know.
Even at home, caregivers may be isolated from their loved one. Some days, my ability to visit with Tony is severely limited. This puts caregivers at a dual disadvantage. They’re not just alone; they’re alone with their worries and their frustrati
on at not being able to make their loved one better.
In-Person Friendships
I do have a few friends who’ve told me they’d like to visit, but I only see two people regularly because that’s all I can handle. Oddly enough, neither of them were part of my life when I got sick in 2001. I mentioned my friend Dawn earlier — our children went to nursery school together, but when they were teenagers, she and I grew apart and the friendship all but dried up. I hadn’t seen her for almost ten years. When she learned I was sick, she began visiting, even if only for twenty minutes — and she’s kept it up. When we arrange a visit, sometimes at my house and sometimes at a local café, we proceed on the assumption that I’ll be well enough to keep the date. Despite her busy life — real estate agent, wife, mother of three, grandmother of six — if I have to cancel at the last minute, she gracefully accepts the abrupt change in plans. The unpredictability of my day-to-day condition does not bother her.
The same is true of my other regular in-person visitor, Richard (you’ll remember him from the broken ankle incident in chapter 4). He knows I may have to cancel at the last minute, and he simply doesn’t mind. I’m fortunate; a lot of people aren’t as understanding as Dawn and Richard. As a result, people who are chronically ill become gun-shy. This, of course, increases our isolation.
Staying Close to Family
Chronic illness also affects family relationships. I often feel isolated from my grown children’s lives. I used to travel frequently to visit them, but I’m unable to do so now. As a result, I rarely see Mara and her family in person. I see Jamal and his family more often because they’re only a bit more than an hour’s drive away and come to visit when they can.
I depend on the digital age to help me stay close to Jamal and Mara. My principal mode of communication with them is texting (it’s hard for me to talk on the phone). I lie on the bed with my laptop; they use their smartphones or their computers, and we chat back and forth. Once, when Mara and her family were visiting, she even texted me from the living room to share what was going on in the front of the house! And when my son-in-law, Brad, was graduating from UCLA’s Anderson School of Management, I was lying on my bed, thinking about the graduation ceremony I was missing, when suddenly this text from Mara’s phone popped up on my computer screen: “Brad’s name was just called and he’s walking across the stage!” It made me feel less isolated on this special day.
I treasure these interactions with Jamal and Mara. You can try any number of modern modes of communication to help you stay in touch with family — email, texting, Skype, FaceTime, social media sites. And, of course, there’s still the old-fashioned telephone! Despite this dizzying array of alternatives, I still wish I could visit Jamal and Mara and their families on their home turfs. When it comes to family, nothing quite replaces being in each other’s physical presence.
Cyber Relationships
When I surf the web, looking to connect with people, I find myself drifting to blogs and other sites where people are similarly sick. I’ve encountered bloggers who range in age from a sixteen-year-old girl with ME/CFS who can rarely leave the house, to a mom with multiple sclerosis who is struggling to raise two girls, to a man in his sixties with diabetes who writes a daily blog from his bed.
These people come from many different backgrounds and don’t necessarily use Buddhist terminology as they navigate their lives — the teenager is a devoted Mormon, for instance — but they are writing about mental suffering. My spiritual community now includes these chronically ill people who have come face-to-face with the fact of suffering in their lives and who, like me, are struggling to accept it and to cultivate compassion for their own illness and for those they encounter on the Internet. The fact that they don’t share Buddhism per se with me doesn’t matter — they’re part of my community.
It’s a limited community for me because, many days, my illness prevents me from reading and answering more than an email or two and checking a few social media sites. However, many of the chronically ill aren’t as limited as this. Whatever your illness, it’s easy to find support groups and blogs with people who are facing the same difficulties that you are. I know from my Internet wanderings that these online contacts can be a lifeline. One woman left a comment on a blog saying she’d been overwhelmed by loneliness until she found blogs written by people who were similarly sick. She said that for the first time since becoming ill, she was able to connect with people who understood her.
Opinions abound on the pros and cons of hanging out on social media sites, such as Facebook. In my view, whether these sites enhance or diminish your quality of life depends on your situation. If you’re able to go out with friends but decline so you can hang out online, that may not be a healthy choice. But if you’re housebound due to physical pain or illness, or if you suffer from depression that makes it difficult to go out, online forums and private Facebook groups can be a valuable source of information and support.
I want to emphasize that the use of social media is not inherently good or bad; it’s an individual choice. If it makes you feel sad to look at pictures that friends and family post of their travels or other fun activities, don’t use those sites. Practice self-compassion and make the choice that’s wise for you.
In addition to forming relationships on the web, I’ve found good company by nurturing some “email friendships.” A few years ago I became friends with a woman who lives on the opposite side of the country from me. We’ve developed a close friendship simply by emailing each other back and forth. I write to Jennie one day; she writes back another. When I compose an email to her, I always look at the last one she sent, so I’m sure to respond to what she wrote. We initially became friends because we’ve both been diagnosed with ME/CFS. Gradually we discovered that we have much more in common than a shared illness. We write to each other about everything, from mundane happenings in our lives to serious issues. It’s a deep and rewarding friendship even though we’ve never talked on the phone. It’s unlikely we’ll ever meet in person, although we often close our emails with the wish that we were in the same room together, chatting over coffee or tea. I’d sure like to give Jennie a big in-person hug!
Solitude
The combination of lost friends and the inability to leave the house makes isolation a fact of life for many of us. After chronic illness set in, it took me several years to realize that isolation itself is a neutral state; it’s simply the fact of being alone. In the above discussion, I added the words painful, sad, and difficult, because that was my experience of isolation in the early years of the illness. If isolation has also been hard for you, here are some ideas to help you alleviate this source of mental suffering. To start, consider this excerpt from Paul Tillich’s The Eternal Now: “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.”
I came across this quotation a few years ago and decided to examine if Tillich’s words could help me change how I react to being alone. To do this, I returned to Byron Katie’s technique that I learned from Mara. If you recall, Katie was caught in a cycle of stressful thoughts about the fate of her daughter who was late coming home. By repeating to herself the one thing she knew for sure — “Woman in chair, waiting for her beloved daughter” — Katie was able to stop the mental suffering and just wait until her daughter returned.
I tried this approach as a way to examine isolation (“the fact of being alone”) in the context of Tillich’s insight. I realized that the very same fact of isolation — “Woman in chair, alone in the house”; “Man lying on bed, alone in the bedroom” — can be accompanied by the mental state of loneliness, or it can be accompanied by the mental state of contented solitude.
My online wanderings have revealed that while for some people, isolation results in a debilitating loneliness, for others, isolation makes possible a treasured solitude. Some people value solitude because it allows them to have more control ove
r their lives. A woman in an online support group for the chronically ill, for example, said she loves isolation because it means that no one is making demands on her. Others value solitude because it’s an essential part of their spiritual practice. Another woman from the same group said, “Solitude is refreshing to the human spirit and is practiced by all religious denominations to come to know God.” Indeed, there is a centuries-old culture of solitude that many people, healthy or sick, find essential to their spiritual well-being despite our culture’s emphasis on the necessity of maintaining an active social life.
If you’re hurting due to being alone so much, it might help to recognize that being alone in and of itself is not a negative experience. It’s a neutral state — to which we sometimes add the desire for things to be other than they are (for example, to have company). When that desire for things to be different goes unfulfilled, we experience dukkha (suffering, stress, dissatisfaction with our lives). Byron Katie’s technique can help here, too. Bring yourself to the present moment by describing what you’re aware of physically: “Woman/Man alone in the house.” Then see if without adding the desire — that felt need — for things to be different, you’re able to experience a taste of serenity in that aloneness — or maybe just relief that no one is making demands on you! If you can, you’ll understand that words such as sad and painful need not necessarily accompany the fact of isolation in your life.
When I got sick in 2001, I had neither this valuable tool offered by Byron Katie nor was I aware of Paul Tillich’s statement. I did manage to make the journey from the “poverty” of loneliness to the “glory” of solitude, but it took several years. At first, isolation and loneliness were synonymous for me and I suffered deeply. After the initial six months of acute illness, friends rarely came to see me, and Tony was still working full-time. Even after leaving his job, he continued to be busy with work or Buddhist-related activities or with trips out of town to see our children and our granddaughter Malia. I spent a lot of time alone — and I cried a lot.
How to Be Sick Page 15
