My Wife Said You May Want to Marry Me

by Jason B. Rosenthal

  The breathing mask was scary, but nothing compared to the images I’d been trying to brace myself for. Amy’s eyes opened to see Miles and me standing beside her, and I saw them widen through the clear plastic of the mask. I knew those eyes. That wasn’t “Thank God you’re here” I was seeing, it was anger. She was pissed! What were we doing there, when we should have been in Atlanta, unpacking the car and getting Miles settled in for school? She thought she’d made herself clear—this nightmare was bad enough without her children’s lives being thrown completely off track because of it!

  It was impossible not to smile a little. Typical AKR. After all she’d been through, Amy was still in there, full force. And before long she calmed down and told us how much it meant to her to wake up and find us with her.

  As it turned out, what had almost cost Amy her life was severe sepsis/septic shock on top of her pulmonary issues. It was a rare reaction to immunotherapy, suffered by only about 3 percent of patients.

  Immunotherapy was no longer an option. We were running out of alternatives.

  Either in spite of all that or because of it, Amy had her heart set on traveling to Florida at the end of December to ring in 2017 with our family, so that’s exactly what we did.

  It still kind of amazes me how cute and alive Amy looks in this picture. Sure, a little thin, but so Amy. It’s hard to wrap my head around the fact that this was her last time with the family in Florida, our last New Year’s Eve together, and the final days when she was allowed to eat.

  She wasn’t about to let anything stop her from conducting another of her interactive experiments on that trip. She called it “Message in a Bottle,” and it was a promise she made in her memoir, Textbook Amy Krouse Rosenthal: if her readers would send her good wishes, for themselves or someone else, she would place them in bottles and toss them out to sea.

  Her readers responded with more than eight hundred messages in a few short months, and she filled six bottles with them. Then, as a family, to help Amy fulfill a promise she would never have broken, we gathered on the beach and threw the bottles into the ocean. It was such an essential part of her fabric to honor a commitment. If she set out to do something, it got done. And if you told Amy you were going to do something, she held you to it.

  I clearly remember sitting on the beach with Amy once all the messages had been “delivered.” She was exhausted, from walking along the shore in the sand, I’m sure, but even the simple act of tossing a bottle into the ocean would have depleted her. As we sat there silently together, I got it, and felt it with everything in me, that our time was limited. But I couldn’t let myself give in to the grief of knowing that. My only purpose at that moment was to make my love, my wife, the mother of my children, the most extraordinary person I’d ever known, feel comfortable and comforted.

  Ann, my mother-in-law, told me later that she could see the pain in my face in this picture. Looking at it now, I just feel a deep sense of love and profound connectedness.

  We went through all the motions of a traditional New Year’s Eve celebration, with champagne and even the countdown to midnight and the official start of 2017.

  And then it was back to Chicago for Amy’s next appointment with her oncologist.

  It was a tense flight back to Chicago, anticipating that looming doctor’s appointment. What was next for us? Were there any options left? Our oncologist had developed a close connection with Amy, and we knew that if there was anything left to be done, he would do everything in his power to make it happen.

  The look on his face when he walked into the room said it all—the news wasn’t good. Amy’s CA125 levels, or tumor markers, were off the charts. She had a complete bowel obstruction that would prevent her from being able to eat solid foods.

  It pained him to say it, but there was only one question left: Did we want to do hospice in the hospital, or at home?

  Hospice. The last phase of a terminal illness. The focus is comfort and quality of life. The word cure is off the table.

  Between inpatient and outpatient visits, we couldn’t begin to count how many trips to the hospital we’d taken in the past twenty-four months. Inpatient stays were soul-crushing. In addition to the endless beeping and other alien sound effects, there was always a steady stream of well-meaning nurses bursting into the room, treating Amy like a child, calling her “Miss Amy” in a singsong way that went right up her spine.

  It wasn’t even a close call. If hospice was where we’d found ourselves, we’d do hospice at home. Our home. Full of love. Full of memories. With our family. With Cougar. With friends. Where Amy would die.

  The message we got that day was not a complete shock. Our optimism, over the past couple of years at this point, was solid. Setbacks, as my good friend Mike Kates, a motivational personal trainer, was fond of saying, were setups for a comeback. We lived by that message in our own way. At the same time, we knew that Amy’s diagnosis was likely terminal.

  We got good at communicating on a much deeper level. Communicating in this way over the course of Amy’s illness helped us deal with the certainty we were now facing: the end. We continued this intimacy after we were faced with this hospice decision. Our friend John Green reminded me of a Robert Frost quote, “The only way out is through,” and Amy and I both had very specific jobs to finish. For Amy, she used the focus of her work to diminish the physical symptoms as well as the extreme emotional roller coaster that being faced with the end of life brought her. My job was clear. I had only one mission—to make Amy comfortable, to be her caretaker, to make her feel loved, and to make the last moments she had on this planet as tolerable as possible.

  Amy and I had deep and emotional conversations about the end of life, parenting our children, and carrying on this life without her. We cried together. We did our best to make sure each of us was going to be okay. My mind was as active as the trading floor at the Chicago Mercantile Exchange before computers took over. The synapses in my brain signaled between considerations like hospice supplies and wound care and more existential issues such as what my life would be like as a fifty-two-year-old widower.

  I set up my home office at the dining room table. Computer, files spread everywhere, it didn’t matter, as long as I had a view of Amy. She and her laptop took up residence on the family room sofa, where she spent hours at a time wrapping up some final projects and working on something new that she was determined to finish, which would become her last published work.

  I would be remiss not to mention that the stress of home hospice care was assuaged by the incomprehensible, undeniable commitment of each one of our children. The emotional and physical support I felt from them—and feel to this day—got me through the roughest of moments of home hospice. Paris took time off from school and was by her mom’s side for the duration of our hospice experience. She was tender with her mommy every moment they were together.

  Paris had become this incredible blend of stunningly beautiful and confidently strong. She’d somehow acquired a pair of magical blue eyes that pierce one’s soul. Amy saw right into the center of those baby blues like no other person in our daughter’s life. They shared inside jokes, phrases only the two of them understood, and unique skills like board games and list-making; they dreamed about each other and, when in each other’s company, could often be found in an embrace.

  From a very early age, Paris was tenacious. I remember instructing her when she was all of four years old, starting youth soccer: “Now, you know how you have lots of really good friends? Well, this ball right here is not your friend, so go get it!” or something to that effect. From that age forward, Paris was an above-average athlete. More important, it was the manner and method to her approach to sports that set her apart. As with other facets of her life, she was intensely hardworking and organized in her athletics. She stayed thirsty for methods of practicing and exercising that would make her better. As a high schooler, she loved to play basketball. We spent many days together alone in a Chicago Park District gym shooting and dribb
ling. She was hard on herself, but persistent. If she was going to play hoops, she was going to be the best version of herself at that sport. This characteristic of hers later applied to almost anything she set out to do. A culmination of her intense work ethic happened in her senior year of high school.

  It was in her final year that the women’s basketball team had to disband due to lack of interest by enough female athletes. So what did Paris do? She lobbied the administration and challenged the league rules to allow her to play the season on the boys’ team. Correct. She became the first female player in the history of her school to play a basketball season on the boys’ basketball team. At the end-of-the-year banquet, the parents gave her a standing ovation in recognition of her integrity, her hard work, and her sportsmanship throughout the season. This was typical of how she continues to conduct her life as a young adult today. Having Paris by my side during home hospice, as a tender supporter of her sick mother, as well as my health-care partner, helped me get through these very dark times.

  And, as if to mimic the Marvel superheroes they have loved their entire lives, Justin and Miles would commute from out of state every weekend. Somehow, Miles, who was in his senior year of college, managed to graduate on time.

  And then there was Justin. Take a cue from my eldest, Justin. He just knew how to communicate. From the moment he knew his mom was in hospice, he made a choice. He was not physically with us every day in hospice, but he connected with Amy every single day. That’s right. He picked up the phone and called his sick mom each day to connect with her. When Amy talked with him, even if it was a brief moment, Amy lit up brighter than the most beautiful candle we had burning at the time. Such empathy from a young man—yes, a millennial—can teach us a thing or two about devotion, love, and connection.

  If I had to make the same hospice decision all over again, there’s no doubt about it, I’d still choose home. But parts of it bordered on unbearable. It was nothing compared to what Amy was going through, just as tough and emotionally challenging as life can get.

  Basic daily activities. Who gives them a single thought? Pulling open the refrigerator door? Big deal. Going to bed? Walk into your bedroom, turn out the lights, and call it a day. Going to the bathroom? So what? Now, in our “new normal,” those things all became hills to climb. Asking Amy to open anything, from the refrigerator door to a bottle of medicine, was like asking her to bench-press three hundred pounds. Walking upstairs to our bedroom was as exhausting for her as running a marathon. And during all those years we raised children together, not once in my wildest imagination did it occur to me that someday I’d need to use my diaper-changing skills on my wife. Did it ever enter my mind to complain or feel put-upon about any of it? Not even once. As much as it was to deal with, I just kept wishing I could do more.

  Her inability to eat, which went on longer than anyone thought she’d be medically able to sustain, meant watching her shrink, right before my eyes. You know how your memory often consists of thousands of mental snapshots of different phases of your life? Well, during our home hospice experience, I only saw Amy as Amy, the love of my life, the woman I’d promised to take care of, in sickness and in health. As I look back, though, I can see how her steady weight loss and the disease that was eating her alive morphed her into “that look.” You know it when you see it, that sunken, almost skeletal shadow you keep wishing you were just imagining; and somehow it only deepens your love from one day to the next.

  If my memory serves me correctly, our doctors were vague about the subject of physical intimacy. I won’t be. The possibility of being intimate in any physical way disappeared early on after Amy’s diagnosis of a terminal illness. At the same time, I can honestly say that as Amy progressed through her disease, our intimacy actually became more profound than it had ever been at any point in our relationship. I still remember a moment during one of Amy’s early hospital visits. I was in her hospital bed with her, holding her, with her tears falling on me, and she looked up at me and quietly said, “I just want to be normal again.” That may sound like a simple, obvious plea. But coming from a superstrong woman like Amy, who never, ever complained or asked for anything, it was like a pure, honest, intense vision into her soul, and a whole new level of intimacy between us.

  There was only one aspect of her home hospice care that, I admit it, I just couldn’t deal with. Amy’s bowel obstruction had caused a fistula—in the most basic layman’s terms, an opening in the body where there shouldn’t be one. Occasionally waste would make its way through that opening. It was extremely messy, very smelly, and almost unbearable to clean up after. Amy’s mom and I did our best, but the wound care was way beyond my sensory limits and health-care skills.

  In case you’ve ever wondered, there really are angels in this world. Ours was named Margaret. She was a wound-care nurse who’d worked for our dear friends Wendy and Jimmy. She took care of the wound, and the mess, and the smell without batting an eye. She couldn’t have been more diligent, more professional, and more tender when it came to keeping Amy clean, which wasn’t easy.

  After Amy died, Margaret shared a story with me:

  You may not remember this, but I’d just finished helping Amy in the shower. When she was all clean, we got out. I was in my clothes, of course, and I was as wet as she was. Amy had a big fluffy towel, and you offered me one, but I didn’t really need it. Then, as we were walking back to your bedroom, she stopped at the closet and offered me one of her sweaters. Of course, Amy was a very small lady—tiny, in fact. And I’m not. I would have had to knit at least three of her sweaters together to fit me. But there she was, so sick, in so much pain, facing death, and she was worried about me getting cold. I’ve known a lot of good, kind people in my life, but I’ve never known one as kind as Amy.

  This sentiment was one I would soon hear from countless people who reflected on Amy and the impact she made everywhere she went.

  Of course, not everyone responds like the Margarets of the world. In fact, the variety of ways people react to a personal crisis like ours makes for a remarkable study of human nature. There’s no doubt about it, it’s a time when no one really knows what to do. Some instinctively get it. Others, out of either awkwardness or a complete lack of empathy, don’t get it at all.

  Family, of course, is everything; and this was their impending loss too. They were remarkable every step of the way. From my four-year-old nieces to my father-in-law, Amy and I could not have felt more support. To a person, they all knew what to say, how to behave, when to gather around us, and when to give us space.

  You know how in life you have those few true friends, that handful of special people you can tell anything to, they can do the same with you, and no matter what, you’ll always be there for each other? If you’re lucky, you have one or two. Amy and I were really lucky—we had several.

  Then there are those good friends you see and/or talk to regularly. You enjoy each other’s company. You have long, chatty phone conversations, you make social plans, and you reminisce about the shared experiences that brought you together in the first place.

  There are also those friends you’ll always feel fond of and connected to, even if, for no other reason than the busyness of life, years go by when you’re out of touch.

  And with very rare exceptions they all, in every category, found a way to step up, just be there, and teach me valuable, lifelong lessons about the inherent goodness of the human race.

  One of those exceptions happened on one of the rare occasions when I went to my downtown office to check in. As I was crossing the street, I saw an acquaintance coming straight at me. I’d known him for years. His wife had known Amy since childhood. Our kids went to grade school and summer camp together. It was immediately clear from the look on his face that he desperately wanted to say something to me, but as we got close enough to engage in a bro hug or a handshake, the most amazing thing happened: nothing. Not a word. Not a gesture. Instead, we stopped for a brief moment, he gave me a blank stare, and we
were both on our way again in a flash. A word of advice if you have a friend whose loved one is dying: SAY SOMETHING. ANYTHING. It doesn’t have to be that hard. “Man, I am so sorry” is good. “I am thinking about you” works. But total silence and darting away as fast as you can is what I’ll politely call poor form, and your friend (in this case, me) won’t forget it.

  I’d also strongly dissuade you from saying things like “Give me a call” or “Let’s get together,” especially without following up. That puts the responsibility for the first move on the person who’s already grieving and on total overload, and no matter how well-intentioned, it ends up feeling like one more burden. It’s a much better idea to call with an already-set plan. “Dinner. My place. 7:00 p.m. Saturday.” Maybe an added, “I’ll pick you up.” Even if the response is “No, thanks,” you can count on it that the gesture mattered and was appreciated.

  What is a legitimate offer to help a person who’s grieving? Certainly that is difficult to say, and depends upon your relationship to the person who has experienced a loss. For example, many people wanted to reach out to me and meant well in doing so. However, “Hey, man, let’s get a beer some time” is not, in my mind, a real offer. It puts the onus on the person who is going through way too much to be the one to make plans. My mind was clogged with impossible thoughts of sadness, loss, loneliness, and a variety of other emotions. I was in no place to make social plans. Something along the lines of “Jason, I know you are going through so much, let’s meet for a beer at Union Pizzeria on Chicago Ave Thursday at 6:00 after work. I’ll be at the bar with a beer. If you are up for it, great, you can count on my being there” sounds solid. Clear. A specific time and place. Listen, the worst thing that can happen is that I don’t show up. Try again. Maybe “Hey, bro, I will be at your place with a six-pack of Gumballhead Monday night. If you don’t feel like hanging out, I totally understand—still, take the brews. I hope you will feel up for a quick visit.” Again, the worst-case scenario is that I don’t even answer the door! No biggie. Leave the beverages. And keep trying.