How to Be Sick (19 page)
Authors: Toni Bernhard,Sylvia Boorstein
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. I didn’t write the chapters in this book in the order in which they appear, but I
did
write this one last 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.”
did
write this one last 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.”
In 2008, 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 the book
Stricken: Voices from the Hidden Epidemic of Chronic Fatigue Syndrome
, and sent the packet to four close friends:
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
All four of these people have dropped out of my life. 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 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 sick. 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 tells us that maintaining an active social life enhances both mental and physical health. And so worry is added to isolation.
As of this writing, I have only one regular non-family visitor and she was someone who was not even a 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, we proceed on the assumption that I’ll be well enough to see her. Despite her busy life—realtor, wife, mother of three, grandmother of six—if I have to cancel at the last minute, she gracefully accepts the abrupt change in plans. She’s simply not bothered by the unpredictability of my day-to-day condition. I know there are other people in town I could invite over for a visit. I don’t do it because experience has taught me that most people don’t react with the same understanding as Dawn does should I suddenly have to cancel. I’ve become gun-shy. This is a common dilemma for the chronically ill.
In September 2007, my second granddaughter, Camden, was born. Since then, my daughter-in-law, Bridgett, has been driving up from Berkeley every Thursday afternoon. Unless Tony is here for her to visit as well, Bridgett knows she can’t stay very long, but she insists on coming anyway, despite a drive that is longer than the visit. I play with Camden on the bed while Bridgett and I try to fit in a few minutes of adult talk. I am so grateful to her.
These are my most faithful in-person visitors—three ladies spanning three generations!
There is, of course, an alternative to in-person contacts for the chronically ill—the Internet. It can be a rich source for developing friendships. My ability to connect with others in this way is limited because I can’t stay on the computer for long without exacerbating my symptoms. That said, I met a woman online with whom I’ve been communicating daily via email since 2004. Sometimes a message may be only one line: “Too sick to write today.”
At first, we wrote about our illnesses, but when we discovered we had more in common than the physical condition of our bodies, the friendship blossomed. We began to share family stories, our own life histories, literature and the arts, a sprinkling of politics, spiritual pursuits, our deepest hopes and fears. The likelihood of JoWynn and I meeting in person is next to none (she lives outside of Baltimore), but the friendship is as rich as they come.
On the other side of the world, I’ve met Judy who lives in Sydney. We share stories about life on opposite sides of the planet. We followed the 2008 presidential election together, emailing back and forth as the returns came in. It was my Tuesday night and her Wednesday afternoon when, together, we learned that Barack Obama had won. Recently, Judy’s husband made a short video of her to show me around her neighborhood. I saw surfers in the ocean and heard the sound of cicadas. The best part for me though was hearing Judy’s Aussie accent.
My illness has also changed the nature of my relationships with my family—sometimes even bringing them “nearer-by.” Before I got sick, I visited frequently with my grown children. Mara is an hour’s plane ride away and Jamal is an hour’s drive away. One way I’ve maintained a close relationship with them despite my new limitations is through Instant Messaging. With IM, I can have live conversations with them! I lie on the bed with my laptop; they use either their computers or their cell phones, and we “talk” back and forth. When Mara and her family visit, sometimes she even IMs me from the living room to share what’s going on in the front of the house. In June of 2009, my son-in-law, Brad, graduated from UCLA’s Anderson School of Management. As I lay on the bed, thinking about the graduation ceremony I was missing, this message from Mara’s cell phone suddenly popped up on my computer screen: “Brad’s name was just called and he’s walking across the stage!” These interactions with Jamal and Mara are one of the great joys in my life. In fact, because Mara has never liked talking on the phone, I’m in better touch with her now than I was before getting sick.
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 that 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 just not being able to go to dinner or the movies together. A lot of the sadness comes from those moments of lost intimacy, like the cherished drive home from a party where Tony and I would “debrief” each other about the interactions we’d had—who we enjoyed chatting with, who we hoped to never see again.
Tony and I were blessed to be best friends as we ventured out into the world. Now, in regard to social activities, he’s house-bound 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.
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 frustration at not being able to make their loved one better.
The combination of lost friends and the inability to leave the house makes isolation a fact of life for many of us. After getting sick, it took me several years to realize that isolation itself is a neutral state. The dictionary defines it as “The fact of being alone.” In the above discussion, I added the words “painful,” “sad,” “difficult,” because that was my experience of isolation in the early years of the illness. If isolation has also been a source of suffering for you, recall the good news that the Buddha delivered in the third noble truth: there are steps we can take to help alleviate suffering in the mind. Relatedly, consider this excerpt from Paul Tillich’s
The Eternal Now
:
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.
To examine if this statement could help me change how I react to being alone, I returned to the technique used by Byron Katie that my daughter had shared with me. If you recall, Katie was caught up 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 for some people, isolation results in a debilitating loneliness, which Mother Teresa described as the most terrible poverty. On an NPR program, the spouse of a woman who had been diagnosed with chronic fatigue syndrome described it as “a very lonely disease because of the extreme isolation and the misunderstanding of family and friends due to the ridiculous name.”
But for others, isolation makes possible a treasured solitude. Some people value solitude because it allows them to have more control over 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 suffering due to being alone so much, it might help to recognize that being alone in and of itself is not necessarily a negative experience. It’s a neutral state—to which we 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 suffer. That’s the Buddha’s second noble truth: The origin of suffering is desire. 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 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 like “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 four 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 Dharma-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.
Other books
Icons by Margaret Stohl
Swept to Sea by Manning, Heather
Will in Scarlet by Matthew Cody
Basal Ganglia by Revert, Matthew
Cambio. by Paul Watzlawick
Fish Stick Fridays by Rhys Ford
Determined Prince (Captured by a Dragon-Shifter) by Michelle M. Pillow
10 Rules Of Writing (2007) by Leonard, Elmore
The Orange Curtain by John Shannon
Creole Fires by Kat Martin