by Jane Heller
“I’m not fat,” he replied much more good-naturedly than I would have. “It’s the steroids. I’m having surgery in a couple of days.”
“Hey, good luck with that,” the guy said, as if Michael had just told him he was about to go parasailing. He didn’t ask what the surgery was for or how long Michael would be in the hospital, nor did he apologize for his crack about the weight. Instead: “Listen, I gotta tell you about the new photography equipment I just bought. It cost a bundle, but I can’t wait to take it to Kenya when I fly there in two weeks and . . .” Blah blah blah.
I remember thinking, what a huge asshole. This was someone we had once considered a friend? While it was true that the relationship was a casual one as opposed to a bond of longstanding, the overt lack of concern for Michael took my breath away.
Still, I reminded myself that illness is a tricky business. A lot of people are uncomfortable talking about it, being around it, worrying they might catch it, feeling pressure to say just the right thing. There are even those who literally grow weak in the knees whenever medical matters are brought up and will do anything to avoid the subject.
Another complicating factor is that most people don’t really understand what’s wrong with Michael; Crohn’s disease isn’t familiar to them unless they have it or know someone who’s had it. What’s more, he functions like a “normal person” much of the time, so maybe they don’t believe he’s really that sick on those occasions when he is.
And then there’s the nature of Crohn’s itself; who wants to discuss nausea, bowel obstructions, and explosive diarrhea? Not exactly dinner table conversation.
And yet, why do friends have to disappear just when we need them the most?
About a week after the incident at the wedding reception, I got an e-mail from a woman I admired.
“How are you?” she asked. “It’s been awhile. I miss you. What’s new?”
“I miss you too, so let’s get together,” I wrote back. “What’s new is that Michael just had surgery for his Crohn’s and has been in the hospital four times this year. It’s been a rough patch.”
Not a word back from her, either in an e-mail or a phone call. Not an “I’m so sorry” or an “Is there anything I can do?” or even a “Give Michael my love”—and certainly not a “Yes, let’s get together.” Just silence. I ran through all the above excuses; she was uncomfortable talking about illness, didn’t understand Crohn’s, didn’t know what to say. Bottom line? She “missed me” but couldn’t bring herself to follow up when I’d told her my husband was in bad shape. She is so off my list now.
I try not to hold grudges or keep score of who was supportive and who dropped us like a brick, but I don’t always succeed. It hurts to be dropped. It hurts to have “friends” move away from you as if you carry a stink. It hurts not to have people wrap their arms around you and say, “We’re here for you.” Intellectually, I get it. Emotionally? Not so much.
On the other side of the spectrum, we’ve always had a core of close friends who’ve been nothing but solicitous and supportive when Michael’s been ill. They know when to call, when not to call, when to visit, when to back off. They’re the people I can count on, and I hope they know they can count on me too.
Has anyone in our caregiver circle experienced the falling away of friends because of a loved one’s illness? I asked them.
Their responses are poignant and I appreciate their candor.
Yudi Bennett: “Until my son Noah got language, he acted out. We would try and go out with our friends who had typical kids and ours was always the kid throwing the tantrum and everybody would be looking and saying what bad parents we were. So gradually our friends with typical kids stopped calling. It was very hurtful. Even some of our friends with no kids stopped calling. We were all about autism and they didn’t want to know from it. I have two friends who have been my friends since I started in the film business forty years ago. They never abandoned us. My family never abandoned us.
“The people who abandoned us were the ones I socialized with after I first had a baby—the friends from Lamaze class and the preschool and the Mommy and Me group. All those people fled, because they were raising their nice healthy babies. Even now, people will call up and say, ‘I don’t know what to do. My daughter can’t decide between Yale and Princeton.’ I couldn’t even get my son into first grade! The other thing that really pisses me off is when people send me one of those Christmas letters about how wonderful everything is with their family. At the end they’ll write, ‘Hope you had a wonderful year too!’ Don’t they look at the person they’re addressing these letters to? How insensitive is that?”
Barbara Blank: “My husband is very, very hard of hearing, along with having some dementia, so our social life has changed dramatically. We still have couples that are friends and they’re wonderful and amazing, but I’m very cognizant of how some friendships have faded. Some people are uncomfortable with the situation and can’t handle it. At first I didn’t understand it and I took it personally. But my neighbor is a psychologist and she said, “It’s not about you. It’s about them.”
Harriet Brown: “There are different layers of what happens. One layer is that when your family is going through a big crisis you sort of pull in. You’re not social. You don’t go out. And because my daughter’s anorexia involved eating, it made me very aware of how many social interactions involve food and we couldn’t do any of that for a really long time. So part of it is you’re simply not participating. You’re out of the loop.
“And then some of it is judgment from other people. One friend said, ‘Oh, I could have told you that Kitty had an eating disorder six months ago.’ I wanted to strangle her. If that were really true, why didn’t she say something to me if she was my friend? And what possible purpose did the comment serve? There were friends that were incredibly generous. But then there were people who just disappeared. They didn’t say anything like, ‘I can’t deal with you and your problems,’ but that’s pretty much what it was.”
Judy Hartnett: “When my husband, Paul, was diagnosed with MS, there were friends who said, ‘Adios.’ I wasn’t aware of it right away, but they stopped inviting us. It didn’t really hurt, because I figured that if people dropped us, we didn’t need them anyway. I still have the people I love, the group I always cared about. What all this allows you to do is not do what you don’t want to do. That’s a freedom that normal people should have. If I don’t want to go somewhere, I don’t go. I don’t have to say why, either. It’s liberating.”
Karen Prince: “After Andy’s stroke, his best friend—the man who helped him build a business—never had anything to do with him again. Nothing. His wife would come over and take Andy to therapy for me, but he wanted nothing to do with Andy. I was so angry. I’m still angry. All that the wife said to me about her husband was, ‘He just can’t handle it.’ ”
Toni Sherman: “About twenty years ago, I was one of the founding members of our book group of about fourteen women. Three of the women were close friends of mine before the book group. The rest were women I liked a lot. We met once a month at each other’s home. We also went on trips together, sharing rooms and cooking together and all of that. It was a very warm, congenial, if not loving, group of women.
“When my daughter Courtney got sick and then my mother was dying, I stopped going to the book group and didn’t appear there for five or six months. During that entire period not one woman, aside from my three close friends who were hugely supportive, contacted me. Not a phone call. Not an e-mail. Nothing. One of them had been a client of mine for twenty years. And she’d had breast cancer and I had been so close and attentive to her when she was having treatment. She finally called me and said, ‘I heard your mother died and I’m so sorry. When are you coming back to book group?’ I said, ‘I’m not coming back.’ She was stunned and asked for an explanation.
“I told her that not one of the women, whose lives I had been such a part of for so long, had made a phone call or s
ent an e-mail. She started to cry. I said, ‘I don’t have anything to come back to. The book group, as an intellectual pursuit, really meant nothing to me. What meant so much to me was the communality of the group—the close-knitness of the friendships, the shared intimacies that had gone on for so many years.’ I didn’t raise my voice. I didn’t sound angry. I was just so hurt and I said that. About three days later she wrote me a letter. So did another woman in the group. They were lovely letters, apologetic, not making excuses. I wrote each one back and thanked them for the letters, and I never went back. I couldn’t do it.”
Stories like the above are all too familiar and give new meaning to the term “fair-weather friend.” But psychotherapist Tina B. Tessina thinks we shouldn’t be so hard on those who flee.
“Human beings are human beings,” she said. “We all have our frailties and failures. Sometimes people just don’t know how to deal with illness so they go away. Sometimes they don’t show up at the hospital because their mother went to the hospital when they were four and was never seen again. If this friend is important to you, I’d suggest reaching out. Just say something simple. Don’t get into ‘Why haven’t you,’ because that produces defensiveness. Just say, ‘I’m wondering if there’s a way we can get together.’ ”
Health coach Nancy Kalish recommends that when friends do offer to help we should take them up on it.
“People are dying to help,” she said, “but the truth of the matter is they don’t know what to say to you. They’re going to say very stupid things for the most part like ‘Hang in there.’ Or they’ll tell you about their aunt in Wisconsin who had pancreatic cancer. They’re reaching for anything they feel will help. But they also want to help you in other ways—by bringing over food, keeping you company, giving you time to yourself so you can go out while they watch the person. Take advantage of whatever they’re offering.”
Michael Lindenmayer, founding partner and chairman of the Caregiver Relief Fund, believes that giving fair-weather friends a pass can be good for the soul.
“Just because some people aren’t going be there for you in the hard times doesn’t mean you have to cut them out forever,” he said. “You watch. One day they’ll call on you for help, because you’re the one who lived it, and then you’ll have to tap into compassion or maybe even mercy and forgiveness, and it’ll feel surprisingly rewarding.”
Maybe. But Michael Lindenmayer makes another point that will not only elicit a laugh but put the responsibility for holding onto our friends squarely on our own shoulders.
“When you leave that house,” he said, “don’t spew your woe-is-me story because not everyone can handle it and you will get isolated. Don’t go around saying, ‘Oh, my life sucks. My life sucks.’ No one wants to hear that. So if you’re going to go watch a movie with a friend, don’t walk in saying, ‘I can’t change another adult diaper!’ At least wait until after the popcorn.”
My feeling about friends is this: Treasure those people who act on their expressions of concern and let the others go. We know how short life is. We know how important it is to keep stress and negativity at bay. We don’t need to dwell on the friends who’ve disappeared. Goodbye and good luck to them.
CHAPTER 12
Does Working Mean You Don’t Care or Does Caring Mean You Don’t Work?
--------------
“Whatever you have done in your life that awakened your passion or made you feel worthwhile, pick it up again.”
—GAIL SHEEHY, Passages in Caregiving
I was in the middle of writing a screenplay last spring when Michael needed surgery. My collaborator and I had been on a roll; he would draft a scene and e-mail it to me, and I would draft a scene and e-mail it to him, and we were making great progress toward reaching our targeted deadline. The last thing I wanted was to abandon the script at such a critical juncture and leave him in the lurch in order to sit by Michael’s bedside watching him eat Jell-O. At the same time, the last thing I wanted was to leave Michael in the lurch in order to sit at a computer typing: “Cut to.”
Writing isn’t a hobby for me. It’s a job, as well as a passion. I don’t dabble in it; I approach it with all the focus, discipline, and seriousness it requires. It’s how I express myself. It’s part of who I am in the world. It pays the bills and has for a very long time. I can’t just stop doing it for extended periods—especially not when a writing partner is depending on me to hold up my end.
But being at my husband’s side when he’s having a medical crisis is also who I am, because I love him and wouldn’t be anyplace else.
What I’m saying is that I’m like every other caregiver—wracked with guilt no matter what I do. If I’m with Michael, I’m shirking my responsibilities as a writer and breadwinner. If I’m at the computer, I’m a crappy wife and a selfish person. In fact, I can still hear the words of a woman who said to me on the phone, as I was leaving the hospital to go home and resume writing, “He’s sick and you’re working?”
You would have thought I had slaughtered a baby turtle.
What’s the balance? How can we as caregivers be at peace with our choices? How do we juggle and feel comfortable about it?
My challenge isn’t as difficult as that of those who have nine-to-five jobs, without the luxury of flexible work hours. I’m also my own boss, so there’s no one whose permission I need to seek if I have to care for my husband. But I’m no less torn in my twin desires: to be with Michael and to work.
It’s when I force myself to stay in the moment that I’m not torn. When I’m with Michael, I say, “Be one hundred percent present, so you can be the best wife and caregiver you can be.” When I’m working, I say, “Be one hundred percent present, so you can be at your most creative as a writer.” Trying to be in two places at once is a recipe for failure at both ends.
And there are benefits to working even though we give care. Work can be a wonderful distraction from the day-to-day monitoring of our loved one’s every ache and pain. It allows us to forget that we’ve got trouble at home—to lose ourselves in something we’re good at as opposed to something we wish we didn’t have to deal with in our life. It reminds us that we’re more than a nurse/maid/drudge. It’s a way to get out of our own head.
Here are some of our other caregivers on the subject of work/care:
Yudi Bennett: “I stopped working as an assistant director for periods of time after Noah was diagnosed with autism, but it was my husband, Bob, who totally changed his career by setting up his budgeting business for movies at home. Once Noah started school I did go back to work. It was a welcome distraction. I loved my career. And Noah’s therapies were very expensive so I felt like I had to help pay for them.
“When Noah was six, I had just finished a miniseries about the Beach Boys and Bob had been feeling very, very tired. He’d been running low-grade fevers and going to the doctors for months, and they kept testing him for chronic fatigue and other things. Nothing showed up. Bob, unfortunately, was not a good advocate for himself. And I was working around the clock—this is where it was bad that I was working. Finally when I had time off I went to the doctor with Bob and actually raised my voice to the doctor, something I rarely do. I said, ‘Look, my husband is not a complainer. If he is telling you he’s not feeling well, there must be something wrong and you need to find it.’ A couple of weeks later they figured out he had cancer.
“I totally stopped working. Noah was now in first grade so he was in school from eight to two. I flew my niece in from Israel and hired her to be Noah’s au pair for the two months that Bob would be in the hospital. When Bob died, Noah was very autistic. He didn’t have age-appropriate language and he had a lot of issues. And then sometime around puberty, he became much better functioning. I wish I knew why, so I could bottle it and give it to everybody. Suddenly he became highly verbal. He’ll talk your ear off. So he has exceeded my expectations. There are days when I’m depressed because I gave up my career and a lot of money. But then I remind myself that I doubt
Noah would be where he is today if I had continued to work.”
Victor Garber: “Work was a distraction for me, but I saw my mom as often as I could. For example, I would take her to brunch at Orso’s on Sundays, which she loved. We’d sit on the patio and she would see celebrities and she had an amazing recall for them. She always knew before I did who was there. When she was young, she was a singer and a television personality in Canada with her own show. She was very successful when I was a kid—a star in our community. She moved to Los Angeles, both to get away from Canadian winters and to pursue her dream of becoming a television personality and actress. She did get the occasional one line on a sitcom, but that was all. I used to bring her to the set of Alias, and she would always ask Jennifer Garner if there were any jobs for her. Jennifer, who was so unbelievably sweet and caring and kind with my mom, would say, ‘Yes, Hope. I’m sure there’s a job for you here.’ ”
Cecilia Johnston: “I’ve started a business recently; I’m an educational consultant now. I teach families how to prepare for college and how to go through the whole process of applying and getting in. The job feeds my soul because I’m helping these kids who have their futures in front of them. That helps me because I have been part of the whole dying process for five years, watching both my parents go downhill.”
Jeanne Phillips: “I began working with Mom when I was a teenager, earning my allowance by answering stacks of mail from other teenagers. In my twenties I wrote the Dear Abby radio show for more than half of the twelve years it was on. And then I got married and lived life. After my divorce, Mom said she needed somebody to do some organizing for her in the office. I ended up working with her for many years, well before she got sick. If she wasn’t feeling creative, I’d be creative. If she didn’t write copy, I’d write copy. If I read something I thought was off the wall or that didn’t seem right to me, I’d fix it. If she couldn’t keep her own schedule, I would try to talk to her about it and so would her personal assistant so it wouldn’t get screwed up. When she was diagnosed with Alzheimer’s, I had been writing the column for a long time. I was already busy but I got busier.”