You'd Better Not Die or I'll Kill You

by Jane Heller

  “He would sit at that computer for hours and write the most wonderful stuff or relay jokes and political things. He had friends all over the world that he communicated with. To this day there are two guys who never met him but knew him from his e-mails. They maintain what they call ‘Joe’s List’ and they send out material of the type they think he would have sent out. I know he was my son, but he was an amazing person. My wife would say, ‘Joseph’s dying of ALS,’ and he would say, ‘No, I’m living with ALS.’ ”

  John Shore: “The dynamic that I was involved in—going to take care of an elderly parent—was absolutely unique for me. So I got to have brand new emotions in a brand new circumstance. And let’s face it: giving love is extremely ennobling. There’s really nothing you can do to feel better about yourself than selfless, loving sacrifice. That is what caregiving is. In regular life you never have a chance to give pure love in expectation for nothing. But with caregiving, you’re giving and giving and giving and then virtue becomes its own reward.”

  Clearly, this is a resilient bunch here. What I love about their answers is that they were alert to the positives even while they were busy trying not to get buried by the crap. They confirm my mother’s belief that out of every evil comes good. Would they rather wake up tomorrow morning and discover that their loved one is the picture of health? Obviously, but since that’s not going to happen they did the next best thing, which was to look for the silver linings.

  “Life-altering events provide us with opportunities to reconfigure our understanding of the world, because we have to actually adapt to something new,” said alternative medicine practitioner Martha Rolls Collins. “And in that something new is an opportunity to learn something new and to experience something new and to deepen our experience of life. There’s real joy in that.”

  Martha is speaking from experience. She and her husband, Michael, lost their house and everything in it when her entire neighborhood was destroyed by a wildfire.

  “The fire was the absolute best thing that ever happened to me—hands down,” she said. “My husband and I really got clear on the fact that we were a partnership and that it didn’t matter that we’re now living in a trailer that’s seven feet wide and twenty feet long. What mattered was that the material stuff was just that—material stuff.”

  Psychotherapist Tina B. Tessina has seen clients who make unexpected connections as the result of being thrust into the caregiver role.

  “One of my clients was adopted,” she said. “He waited until his adoptive parents died, then went searching for his biological mother, found her, and had a little time with her—only to learn she had become very ill. He took care of her until the end of her life. It was a very bonding experience for him. He got to find out about his family history, what his roots were, what his genetic inheritance was. I also have a friend who got married and had a couple of children and divorced her husband after she found out he was a philanderer. When he became ill, her daughters called her and she went and took care of him. That was a healing time for both of them. He was grateful to her and she got to make peace with him.”

  Psychiatrist Neal Mazer works with his clients to get them to see past the immediate crises and appreciate how they’ve grown as a result of them.

  “I ask people to acknowledge the power of their journey,” he said. “We sign on for this incarnation in order to learn something, to experience something—not to just sit there taking.”

  I’ve decided, after talking to everybody in this book, that I’m ready to look on the bright side too. Here are a few of my silver linings, in no particular order.

  JANE’S SILVER LININGS

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  ∗ I don’t have one of those elusive, disinterested husbands who are constantly traveling or tied up in meetings or spending hours on the golf course and who only come home for a change of clothes.

  ∗ I don’t sit around obsessing that my husband is having an affair when he says he’s at the doctor, because when he says he’s at the doctor he always is.

  ∗ My husband knows how much I love him because even though I’ve had a history of bolting out of relationships, I’ve stayed by his side during the worst of times.

  ∗ I’ve gained tremendous respect for my husband after watching him suffer for years without ever once dissolving into self-pity.

  ∗ I not only overcame my aversion to being around sick people but also volunteered at my local hospital where there are more sick people per square feet than anywhere else.

  ∗ I now leap into action when a friend is going through a medical crisis—even if it’s just to say, “I’m thinking of you.”

  ∗ I experience more joy hearing my husband laugh than I ever thought possible.

  ∗ I don’t get as mad at my husband as I used to, not even when he sheds those little seeds on the floor after he eats an English muffin.

  ∗ I have a built-in excuse to say no at the last minute to social functions my husband would rather blow off.

  ∗ I’ve learned that there are marriages where everybody is healthy and marriages where only one person is healthy and marriages where nobody is healthy, but they’re all marriages and they all count and there can be just as much love in the ones where nobody is healthy as there is in the ones where everybody is.

  CHAPTER 28

  When Caregiver Becomes Caregivee

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  “Ailments are billboards alongside the road that say, ‘Something here isn’t working well.’ ”

  —MARTHA ROLLS COLLINS, alternative medicine practitioner

  It all started with a sore throat.

  So what, I thought, and went about my business.

  Even when the sore throat became an I-swallowed-a-razor-blade sort of sore throat, I still ignored it.

  It was sore when Michael was hospitalized for the first time in 2010, and it stayed sore for what seemed like months. I didn’t have a fever and I wasn’t wracked with chills, so I reasoned the sore throat away with “It’s very dry in the hospital” or “I must have an allergy” or “I’ve been using my voice too much.” Who had the energy to think about my health when it was my husband who was the sick one?

  And then there were the red, scaly patches on my face and leg that were growing ever bigger and more unsightly by the day. I didn’t have time to think about them either, so I avoided looking at them.

  It was during Michael’s second hospitalization that year when my throat hurt so much it was getting hard to talk.

  “How long has this been going on?” asked my primary-care provider during the appointment I’d finally squeezed in between hospital visits.

  “A while,” I said. “I’m not sure.”

  He sent me to an ear, nose, and throat specialist, who stuck an unpleasant little scope up my nostril and down my throat.

  His verdict? Acid reflux.

  “But I don’t have heartburn,” I said.

  “Well,” he said, “your food is backing up.”

  “How delightful,” I said. “Sounds like I need Drano.”

  “I’m writing you a prescription for Prilosec,” he said. “Take it every morning before breakfast. And cut out all foods that trigger an acid response—especially wine and chocolate. Do you eat those foods?”

  Do I eat those foods?

  I started laughing. That glass of Syrah and those Pepperidge Farm Double Chunk Chocolate Chip Cookies were my end-of-the-day treats after I came home from visiting Michael, my rewards for good behavior, my way of winding down. They were the only two pleasures of my life.

  Fine, I thought. It could be worse. I could have been told I had cancer.

  Oh, wait. I was told I had cancer the very next month.

  My dermatologist took biopsies of the two scaly red spots I’d pointed out and called a week later to say they were malignant—a basal cell carcinoma on my cheek and a squamous cell carcinoma on my shin. The former would require the services of a plastic surgeon, so I wouldn’t look like a character in The
Texas Chainsaw Massacre, but it was the shin that was more problematic. Not only is the lower leg notoriously slow to heal, making it ripe for infection, but there’s very little tissue on the shin; if you make an incision there, you’re likely to need a skin graft, and skin grafts on the leg have a very high rate of failure.

  “Who has time for any of this?” I said to Michael, popping a Prilosec. “I don’t do ‘sick.’ I’m the well one.”

  He shrugged. “Everybody has to do ‘sick’ at some point.”

  I sucked it up and had both surgeries, and the point I’d like to make is this: I let my skin lesions go unattended to for far too long and paid the price. They were larger and more difficult to treat, not to mention expensive.

  In between my surgeries, around the time of Michael’s second abdominal operation, my supposed acid reflux blossomed into outright nausea along with a distended belly. I’d wake up at two or three in the morning with pain in my chest and a gnawing in my stomach. I’d spend the rest of the night swigging Mylanta and praying I wouldn’t throw up.

  I’d said goodbye to wine, chocolate, and anything resembling an onion, and had been eating nothing but mush. Was it really the acid? Or was it stress? Had I been keeping my anxieties bottled up to the point of making my gut sick? Was I dying?

  I went to see Michael’s gastroenterologist and agreed to have an endoscopy. The result? Both my esophagus and my stomach were the picture of health.

  “If everything’s fine, then why do I feel this way?” I said.

  “I don’t know,” he said. “Let’s keep looking.”

  He ordered a CAT scan (it was normal) and an upper GI test (also normal), and even sent me to a cardiologist for a stress test (completely normal). I was fine—except that I felt lousy.

  “Maybe it’s a motility issue, and you have a sluggish bowel,” said the gastroenterologist. “It happens when people get older.”

  Okay, may I please have a moment to rant about the “it happens when people get older” remark?

  Yes, I get that I’m not twenty anymore, but I’m not Grandma Moses either. I’m a baby boomer with a lot on my plate is what I am. I don’t view myself as someone whose body is falling apart. And yet . . .

  My dentist: “Your gums are receding. It happens when people get older.”

  My colorist: “Your hair is thinning. It happens when people get older.”

  My manicurist: “Your nails have ridges. It happens when people get older.”

  And here’s what else happens when you get older: your vagina gets drier and your tush gets fatter; you don’t need to shave under your arms anymore because there’s nothing there to shave, but you do need to pee as soon as you feel the urge because the muscles in your bladder don’t work as well and you might wet your pants. Plus, you can no longer remember rock ’n’ roll lyrics or movie titles or names of state capitols, let alone various passwords. So yeah, things happen when people get older, but it’s really irritating to keep hearing about it.

  With regard to my mysterious digestive ailments, the gastro doc prescribed trazadone, an antidepressant that’s said to speed motility. Its side effect is supposed to be drowsiness. It had the opposite effect on me and kept me up all night. I dumped the pills.

  Next, he sent me for a blood test for celiac disease. While I waited for the results I went on a gluten-free diet—really threw myself into the whole thing, buying quinoa, cereal made of rice, and flour derived from garbanzo beans. The test was negative and the diet didn’t make a dent in my problem. I did discover that I loved quinoa and Rice Chex, however.

  “Maybe you have irritable bowel syndrome,” said the gastro doc, falling back on the catchall diagnosis for digestive troubles. “Let’s start you on Levsin. It’s an antispasmodic.”

  The Levsin gave me dry mouth but no relief from my stomach cramps and nausea.

  Oh, did I mention that during my odyssey through the digestive system, I sprouted two more skin cancers: another squamous cell carcinoma on my other shin and another basal cell carcinoma on my face? You would have thought I’d been bathing in Miracle-Gro.

  After those surgeries, I went back to the gastro doc, who said, “It’s time you had a colonoscopy.”

  I was long overdue for “the butt probe,” as I referred to it. Every year my primary-care doc would tell me to have one and every year I’d come up with a reason not to. Why was I such a baby about it?

  For one thing, I never forgot what happened to Michael after the God of Gastroenterology punctured his colon.

  For another, I did not want anybody poking around inside my body.

  For a third, I was terrified of “the prep”—having to drink gallons of foul-tasting liquid and possibly throwing up in the process.

  But I did want to feel better. If having the test would lead to a healthier gut, I would grow a spine and schedule it. “Just one thing,” I said to Michael. “If he punctures my colon and I end up having a bag, I want you to pull the plug.”

  He laughed.

  “I’m serious,” I said. “Those are my last wishes.” And then I launched into a speech about the people he should contact after I died, the kind of memorial service I wanted, and the place where I wanted my ashes scattered (Yankee Stadium).

  “It’s a colonoscopy, Jane. There won’t be any plug pulling.”

  “We’ll see.”

  I bought the prescribed containers of something called MoviPrep and instantly felt deceived. Doesn’t MoviPrep sound like a word associated with, like, movies? Something fun and entertaining and red carpetish?

  Then I read everything I could find on the Internet about how not to throw up from drinking it. Among the tips I followed:

  ∗ Keep the stuff cold.

  ∗ Drink it through a straw.

  ∗ Hold a wedge of lime up to your nose while you drink.

  ∗ Exercise between drinks to distract yourself from the whole ordeal. (I came up with a “colonoscopy playlist” for my iPod; the songs included “Stayin’ Alive,” “Dazed and Confused,” and “Rescue Me.”)

  It all worked, and I knocked off Container No.1 with ease.

  What didn’t work was the prep itself—not at all. In a panic, I called the doctor’s service at eleven o’clock that night and left a message to report that I hadn’t been able to “void.”

  The covering doctor called me back and said, “Give it time. It’ll happen.”

  I gave it time—all night and into the early morning. Nothing. At eight a.m., I spoke to my doctor’s nurse to update her on my lack of progress.

  “Drink the second container of the MoviPrep. That usually gets things going,” she said, then added: “This happens when people get older.”

  I wanted to strangle her.

  But she was right. Things “got going.” The colonoscopy was uneventful and so were its results.

  “Clean as a whistle,” said the gastro doc.

  “Great,” I said, “but then why have I been having all these symptoms?” I was relieved but frustrated too. Was it all in my head? Had caregiving made me crazy—literally?

  “I’m stumped,” he admitted. “We’ve ruled out everything from a GI point of view.” He paused, pondering. “Although on the scan, I could see that you do have a very large uterine fibroid.”

  This was his solution to my months and months of gastrointestinal runaround? A fibroid I’d known about for years?

  “Why in the world would it be causing problems now?” I said.

  “Maybe it’s grown,” he said. “It looks like it could be pressing on your colon and creating a partial blockage. You need to see your ob-gyn and get it checked.”

  What fun. Another doctor to visit. Another bill to pay. Another workday interrupted.

  “Your fibroid is quite large now,” said my gynecologist, nodding at the ultrasound monitor as I was stretched out on my back on the waxed-papered examining table, my feet in the stirrups and her wand up my privates.

  “It’s the Miracle-Gro,” I said.

  “
Let’s say your uterus is the size of a lemon. That fibroid is the size of a grapefruit. I can see it pressing on the colon, which could certainly be causing your GI problems. I recommend a total hysterectomy.”

  “Are you serious?”

  “We take the uterus, the ovaries, the fallopian tubes, the cervix . . .”

  “Whoa. Whoa. Whoa. You can’t just take the fibroid?”

  “It’s too big. That’s why your belly is distended. You’re the equivalent of fourteen weeks pregnant.”

  “Fourteen weeks pregnant,” I repeated, thinking I should have a baby shower for the fibroid and give it a name.

  While I sat up, she explained that the surgery would require an abdominal incision, that I’d be in the hospital for three or four days, and that the postoperative recovery time was six to eight weeks.

  “I don’t have time for all of this,” I said, wishing I could walk out of her office and go back to being a person who didn’t need the removal of several internal organs as opposed to someone who did. What if Michael had an emergency? I was supposed to take care of him, not the other way around. Plus, I had a book deadline.

  “The surgery is the only way to determine whether or not you have cancer,” said my doctor as she saw me wavering.

  “Cancer? I thought fibroids were benign tumors.”

  “They are, but yours have grown rather quickly since your last ultrasound and that’s not normal. You need to have this, Jane.”

  “I’ll think about it,” I said and went home.

  I thought about it. I talked to everyone I knew who’d had a hysterectomy. I talked to everyone who knew someone who’d had a hysterectomy. I got a second and third opinion. I went online and looked up every conceivable article about the operation along with every conceivable complication. Ultimately, there really was no choice but to have the damn operation.