“You probably want a boy!” I’d cry to Joel at night.
“Hun,” he’d say lovingly. “A healthy baby. A sibling for Sophie. More of us combined into one little creature. That’s what I want.”
“I want a boy,” I’d admit in a whisper. I had grown up in a house of women. While I was close with my dad, boys were always so foreign to me. I always wished for a brother myself, so I wanted one for Sophie.
“If we did have a boy,” Joel would say, “I’d want him to be left-handed.”
“Your mom and Andrea are lefties.”
“I know! Do you know how successful a great left-handed pitcher could be?” he’d say. “I’ll tie his right arm behind his back in case he’s a righty. If he could play ambidextrously, even better.”
It seemed there were babies around us at all times. It was hard for Joel and me to see pregnant friends—why wasn’t it happening for us? We tried to stay positive.
“Why are we stressing over having another?” Joel would ask as we’d watch Sophie draw . . . or play . . . or sneeze. “She’s perfect in every way. Maybe that’s why we can’t get knocked up. She broke the mold.”
One of my friends who had success getting pregnant recommended acupuncture, so I made an appointment. Needles were stuck all over my body while soothing candles flitted in the background. The sweet Chinese couple who ran the place would turn on a sound machine with relaxing ocean waves; the wife asked me about my diet.
“Nothing cold to eat anymore, OK? No salad. Warm food and tea. No coffee. And we’ll give you herbs.”
I did this for months. I enjoyed the ritual of zen-ing out twice a week for twenty minutes. We felt hopeful. I took their pills and herbal supplements and vitamins to boost my fertility. I gave up caffeine and red meat and drank protein shakes. But every month, after calculating the best time to conceive and saving up sex, or having sex like crazy—nothing.
Eventually I took hormones to produce more eggs, but they made me overly emotional and weepy. I went to the doctor to have her inseminate me at the exact right time of the month, but again—nothing. Joel and I realized that the change in diet and shots and doctor appointments were doing us in. Every month was an emotional roller coaster, and it had been like this for five years. Living with the possibility of getting pregnant every month was causing a tremendous amount of anxiety and disappointment. We kept going back to the idea that we already had a child. An amazing child who we loved and adored and who was good and kind and smart and beautiful.
Joel and I loved each other. We loved Sophie. We loved our life together. We were a family already, and that was everything. Together, we mourned the family we thought we would have . . . and by focusing on what we did have—which was so much!—we were able to move forward.
Joel was now in a teaching hospital, which meant there was never just one doctor, but one doctor being trailed by anywhere from one to four other doctors. Some were already specialists in their particular area of study, others may have been residents, but it was a continual parade of smart, ambitious, and perplexed doctors and legitimate wannabe doctors who looked at Joel’s illness as a mystery they were determined to solve. I’ll never forget how young these doctors were.
“It looks like they’re in Halloween costumes dressed up as doctors,” I said to my bestie, Jillian, who was at the hospital with me almost every day that October. She and I had met when I first moved back from New York. We grew up together working in television. We were at each other’s weddings and there for the birth of each of our children. Having her with me while Joel was in the hospital was a huge comfort. “I keep expecting them to say, ‘Trick or treat,’” I said.
She shushed me with a nudge. One of the doctors overheard. He rolled his eyes, but I didn’t care. Just figure out what’s happening to Joel . . . and tell me that I’ll be bringing him home soon.
It was after a group of four pulmonary specialists examined him one morning that I realized what we were dealing with. One of the four, a woman whose name I must have written down somewhere, pulled me aside and gently asked, “Is your husband a man of dignity?”
By now, it was hard to keep track of which doctor did what. There were cardiologists, pulmonologists, a slew of neurologists, physical therapists. I didn’t understand why a lung doctor was even part of Joel’s team. But this gentle and well-meaning doctor had pulled me aside and asked me about Joel’s dignity. I told her: “Quality of life is important to him.” That was my line. That is what I told every doctor and nurse who walked into his room, whether it was to take his temperature or draw blood. Because he had MS, Joel and I had had many discussions on life and how we wanted to live it. We wanted to grow old together. We wanted to be healthy. We wanted to live fully. Quality of life, for Joel, meant that he would remain active and self-sufficient. He did not want to rely on someone else to feed him. Having just turned fifty years old, he did not want to be in diapers.
She put her hand on my elbow. “What I mean is, is he someone who wants to be perfectly capable of being independent.”
I looked at her. “Yes, absolutely.”
“Well,” she said, “it looks that as of now, the kind of recovery we can hope for is that he may be able to hold a comb one day.” I tried to breathe, but it came out as gasps as she continued. “But he wouldn’t know what to do with it.”
What is the proper reaction for a wife when she hears this about her once healthy husband? There was not enough air in the room for me to breathe. My mind was swirling, I felt myself go blank.
“Thank you,” I managed to say. The truth is, I appreciated her clarity. I nodded my head. I understood what she was saying. I watched as she walked away. I stood in the hospital hallway by myself. I leaned against the wall, sighed heavily, and slowly let my back slide down the wall until I was seated, my legs splaying out in front of me.
I started to cry. It was the kind of cry that comes from someplace so deep inside that it felt like I was made of water. It had been over two weeks since this trauma had started. Two weeks of uncertainty. Of fear. Of confusion.
I knew that Joel wanted no part of what was happening to him. There were countless doctors, nurses, and specialists. One invasive procedure after another, all trying to establish his diagnosis. How did he fall into a coma? What is this that is wreaking havoc on his brain and central nervous system? Will he be able to recover?
I realized that everything was up to me now. I knew in my soul that everything I did from this point forward had to be for Joel. He no longer had a voice, so I was his voice. Sitting there in the hospital hallway, my tears nowhere close to drying up, I knew that Joel and I were connected, and this gave me strength for the many decisions I would soon have to make on his behalf.
SIX
Holding On
There’s a photo I have of Joel and Sophie that makes me happy and sad at the same time. We were riding on a Hop On Hop Off tourist bus in Barcelona, Spain. In the photo they are both asleep but sitting upright in their seats, with their chins resting heavily on their chests. We had arrived the night before, but for some reason, I wasn’t feeling jet-lagged. We had been exploring the city all morning. Joel and Sophie sat together on the upstairs part of the bus; I was on the lower part, studying the map and figuring out where we should get off and what sites to see. A stop was coming up, so I went upstairs to get them and found them both sound asleep. I couldn’t believe it. We were in Barcelona! There was so much to take in! But here were my two travel companions, out cold.
It was hot, mid-August, and the city was crowded. The two of them were spent. Given the traveling, touring, and general tumult that comes with such a big trip, it wasn’t out of the ordinary to fall asleep on a bus less than twenty-four hours after arriving. But Joel wasn’t just exhausted, he was fatigued. There’s a difference. He wasn’t bouncing back as fast as he used to. This was apparent throughout the whole vacation.
Sophie was ten years old at the time, and it was the first and only time all of us were in Europe t
ogether. We wanted to honor Joel’s wish to travel before his condition got worse. At the time, I didn’t believe that the disease would progress to the point where Joel wouldn’t be able to walk, but we both liked the idea of travel and taking a big family trip.
The journey we planned was a week-long cruise that went round trip from Barcelona (where we would spend several nights before the cruise), through the South of France, then on to Italy with stops in Florence and Rome before making the return to Spain. After the cruise we planned to spend some time in London visiting friends.
“Why are people talking to you in Spanish?” Sophie asked me when we were in Park Güell one afternoon.
“I think they think I’m Spanish for some reason,” I said.
Joel chimed in, “You kind of look it.”
“Es posible,” I shot back.
Joel continued. “And your high school Spanish has held up muy bueno!”
As a family, we were making small adjustments. As we toured the cities, I carried a heavier backpack with guidebooks, water, sunscreen, and a camera. Joel carried a small bag with our snacks, passports, and money. Joel was stoic, as always, but between the heat and all the walking, it was too much for him.
In Pompeii, a week later, we were on a morning tour of the ancient ruins. It was ninety degrees outside and the air was thick and humid. Sophie and I kept up with the group, and Joel, who had said he was fine to take the heavier backpack, lingered a bit behind.
“Hun,” I said to him. “Let’s switch.” I handed him the lighter bag.
“No. I’m good,” he said. “Just taking it all in.”
I moved ahead with Sophie but kept a watchful eye on Joel. His walking was fine back then but the ground was uneven. The heat was oppressive. He had to take breaks, and he moved slowly.
“Hun,” I said again a little while later. “Please.” I handed him the small pack, holding out my hand for the large one.
He sighed and gave in.
“You’re making a big deal out of nothing,” he said. “I’m really fine. I don’t like you treating me like I’m not.”
“I know,” I said. “I’m a pain in the ass.”
But that’s how the trip went. I continued to be a pain in the ass. Joel did his best but would acquiesce when I insisted on doing the heavy lifting. The symptoms of MS weren’t so bad then, but he felt them. He didn’t like being the slow guy in the back . . . or having to pack his medications and keep up that routine while we were away . . . The MS was persistent. It came on vacation with us.
Sophie, meanwhile, didn’t notice the nuances of Joel’s condition. Sometimes when he was just a few steps behind or needed to sit down for a minute, I’d tell her, “Daddy’s OK. He just needs a break right now.”
She’d ask, “Is it his MS?”
“Yup!” I’d answer. “But I think we could all use a rest anyway.”
She understood. Joel’s MS was simply a matter of fact. She didn’t worry over it because Joel and I were accepting that this was part of our life.
When I think of Sophie in those preteen years, I remember that she was so happy and easygoing. I always say that she got her patience, kindness, and empathy from Joel. She may have his eyes and my hair, but all of her goodness comes from him. It’s evident in the way she documented our trip. She loved making short videos explaining where we were and what we were doing.
“Hi, I’m Sophie!” she’d say into the camera. “Here we are at the Spanish Steps. It might sound like we’re in Spain, but we’re not! We’re in Italy!” And she’d wave her arm behind her in a grand gesture to show the Spanish Steps in Rome. I love those videos; she can’t even look at them now. She’s mortified by what she wore, how she sounded, what she looked like. But she was adorable and chronicled our trip in a memorable way. Sometimes if I really want to annoy her, all I have to do is say Hi, I’m Sophie! in an affected voice for her to roll her eyes and scream, M-o-o-o-m!
Joel managed well for the most part, but if we had the option of finding an out-of-the-way gelato shop or art gallery, or of getting back on the ship, Joel almost always, and uncharacteristically, preferred heading back to the ship. There was a day in the South of France when Joel and Sophie didn’t get off the boat, even though we had a tour booked. Sophie wasn’t feeling great; all of the exotic foods and continuous motion of the ship and our city touring wasn’t sitting well with her. Rather than encourage her to try to do the easy, air-conditioned exploration tour of Nice and Monaco, Joel quickly offered to stay behind with her.
I gave him a look. “Really, hun?”
“Yeah,” he said. “I could use a day off.” He kissed me and said, “But you should go.”
“Yeah, Mom. Have fun. Daddy and I will be fine,” Sophie said.
Them staying behind gave me pause. It was always like Joel to give up the best seat or the best piece of cake or the best anything for me, but I worried that maybe he wasn’t feeling as good as he let on. Yet I also didn’t want to miss Nice. We were in the South of France! I wanted to see it.
So I went. Alone. I ate crepes. Explored a gorgeous open-air market with some of the most beautiful flowers I have ever seen. I managed fine on my own, but I missed Joel and Sophie. I would have had a better time if we had all been together.
By the time we got to London, Joel seemed better. There wasn’t quite as much schlepping. The climate was cooler. We spoke the language. We had the best time with our friends! We saw plays, went to Stonehenge, watched the changing of the guards. That trip to Europe was worth the time, effort, and expense. It was everything we had hoped it would be, even if Joel had to move at a different pace.
We were gone sixteen days. In that time, we experienced different cities and languages and adventures. We tasted new foods and learned the most basic and conversational phrases in Spanish, French, and Italian. We were active and busy; we met people from Ireland and Ohio. We had high tea and Limoncello and tapas. We traveled by plane, by boat, by train. We lived a lot of life in those sixteen days.
It was now the same amount of time that Joel had been in the ICU.
His EEGs revealed that his brain function had slowed down significantly. One of the neurologists said that Joel had paralysis from the waist down. They feared that whatever this virus was, it was attacking Joel’s central nervous system. He was on a machine that helped him breathe. He was being fed by an IV. They still talked about Joel recovering. But to what end? The thing both Joel and I cared about the most—his quality of life—had already been severely compromised. Intellectually, I knew things were dire. But emotionally, I was still holding on.
Every day I went to the hospital. I was on the morning shift and would go directly from dropping Sophie off at school. I overlapped with Hal, who would come around lunchtime. He would stay a few hours until Joel’s mother, Nancy, would come and sit with Joel in the evenings. It took a lot of coordinating. Because I was the wife, I was the only one the doctors would relay any information to. Every night, I would call Hal and Nancy with an update.
One night I could barely get the words out when I called Nancy.
“It’s not good,” I started. I didn’t bother holding back my tears.
She gasped.
“The neurologist says he’s paralyzed.”
She gasped again.
“His brain activity has slowed down a lot.”
“Oh no!” she cried.
“Nancy!” I shouted. “I can’t keep doing this! You have to let me talk. I know it’s difficult, but I have to call Hal when I hang up with you. I’m trying to relay information so you have it, but I’m the one who’s doing everything and managing everyone, and I can’t listen to you freaking out.”
“I’m sorry,” she said. I felt terrible. Joel was her son. What mother wouldn’t react to hearing this kind of news about their child? I tried to breathe, to calm myself.
“I’m sorry, Nancy. This has been going on a long time. I just . . . I need a break,” I cried. I tried to breathe as we wept together on the p
hone.
After a while, I said, “I miss Joel.”
“I know you do, honey. So do I.”
I knew people were concerned for me and Sophie, but I was in survival mode, attempting to manage everyone and everything. Still, I saw how tragic this was for Nancy and Hal. Hal, somehow, remained positive. For Nancy, seeing Joel like this was intolerable. I’ve come to realize that it doesn’t matter if your child is five months, five years, or fifty years old. They are still your child. To see them suffer in any way, especially in a coma in the ICU of a hospital, is beyond devastating. I wanted to offer everyone my comfort; they wanted to offer me theirs. It felt overwhelming.
I got into bed that night heavy with grief. Sophie was already asleep in what was becoming her side of the bed—formerly Joel’s. I thought of Joel and all that he had endured.
We were coming up on Joel’s third week in the hospital. Almost twenty-one days. They say it takes twenty-one days to start or break a habit.
The habit that seemed to be taking shape was a life without Joel.
I cried myself to sleep in the same clothes I had been wearing all day.
Jillian met me at the hospital the next day. The same young doctor who looked like he was just dressing for the part a week earlier stood in front of me. Jillian had her notepad ready as she did whenever the doctors came in with news. She clutched a tissue to her nose and was seated next to Joel while I stood across from the doctor expectantly. He was extremely somber and had difficulty saying what he came in to tell me.
“So, the cultures came back . . .” He shuffled his foot.
“OK, good!” I said, hopeful.
Joel had been tested for a wide variety of viruses at the first hospital. They all came back negative. Because his symptoms persisted, many of the same tests, along with tests for different diseases and viruses, were given and repeated every few days to determine which antibodies, if any, were present in the cultures. This was the moment we had all been waiting for.
Widowish: A Memoir Page 5