PRAISE FOR WIDOWISH
“In Widowish, Melissa Gould takes readers on her journey through grief in all its complexity, reminding us, in the end, of our endless capacity for love.”
—Lori Gottlieb, New York Times bestselling author of Maybe You Should Talk to Someone
“Widowish is an unputdownable modern love story, the kind you don’t ever want to end. Except when it does, Melissa Gould has given us a transformational tale of modern loss and how grieving doesn’t always have to look the way we thought. One of my favorite grief memoirs to date.”
—Claire Bidwell Smith, author of Anxiety: The Missing Stage of Grief
“No one gets through this life without suffering some kind of loss, and Melissa Gould shares her journey with honesty, humor, and surprising insights. I read it straight through and now want regular updates on her life. Widowish is going to break your heart in the best way possible. I love this book!”
—Annabelle Gurwitch, author of I See You Made an Effort and You’re Leaving When?
“In Widowish, you can acutely feel Melissa Gould’s struggle to maintain normalcy as her husband slips away. This book is a brave and powerful examination of all the ‘shoulds’ that sometimes get in the way of our forward movement and evolution. I found myself rooting for Melissa the whole time.”
—Vanessa McGrady, author of Rock Needs River
Text copyright © 2021 by Melissa Gould
All rights reserved.
No part of this book may be reproduced, or stored in a retrieval system, or transmitted in any form or by any means, electronic, mechanical, photocopying, recording, or otherwise, without express written permission of the publisher.
Published by Little A, New York
www.apub.com
Amazon, the Amazon logo, and Little A are trademarks of Amazon.com, Inc., or its affiliates.
ISBN-13: 9781542018784 (hardcover)
ISBN-10: 1542018781 (hardcover)
ISBN-13: 9781542018760 (paperback)
ISBN-10: 1542018765 (paperback)
Cover design by Caroline Teagle Johnson
First edition
For Joel, “no matter what occurs” . . .
And for Sophie, always.
CONTENTS
AUTHOR’S NOTE
ONE Make Him Better
TWO Milestones
THREE Uncertainty
FOUR No Matter What Occurs
FIVE Quality of Life
SIX Holding On
SEVEN Decisions
EIGHT The End
NINE Doing Clooney
TEN Only Child, Only Parent
ELEVEN The Other Joel
TWELVE I’m a Widow
THIRTEEN Small Steps Forward
FOURTEEN Easy
FIFTEEN Marcos
SIXTEEN Man of My Dreams
SEVENTEEN Every Everything
EIGHTEEN Widowish
NINETEEN Getting Personal
TWENTY Love
TWENTY-ONE God Laughs
ACKNOWLEDGMENTS
ABOUT THE AUTHOR
AUTHOR’S NOTE
Most names and identifying details have been changed to protect the privacy of individuals.
ONE
Make Him Better
Your husband is critically ill,” said a doctor in the cold hub of the ICU. There were three of them, in their white coats, refusing to look me in the eye.
Behind me, past a closed curtain, Joel lay in his hospital bed, his dark hair slightly disheveled, his green eyes closed, wearing nothing but a hospital gown. He was hooked up to an IV surrounded by tubes and wires.
Here, at the active nurses’ station, phones were ringing; I sensed information being exchanged about patients all around us, but all I wanted was clarity about my husband’s condition.
“What exactly are you telling me?” I asked. “We have a thirteen-year-old daughter. I don’t understand what you’re saying.”
The infectious disease doctor, who days earlier had examined Joel from head to toe looking for a bite or a welt or something that might indicate the reason for Joel’s illness but had found none, said, “Joel is gravely ill.”
Gravely? A second ago he had said critically.
I didn’t understand what was happening. It had been three days since Joel was alert and awake. Three days since my husband walked into the emergency room because of the flulike symptoms that had been plaguing him for nearly a week. I felt a sense of urgency. Joel’s health had rapidly declined since the hospital admitted him, yet no one seemed to have a clue as to why.
I had experience with Joel being ill. He had been battling multiple sclerosis for a few years. But MS is not a disease people die from. It’s a “quality of life” disease that can cause problems with balance, muscle control, and other bodily functions, but it does not typically leave a person in the hospital, noncommunicative and nonresponsive.
When I had arrived at the hospital that morning, I expected the doctors to share some positive or at least conclusive news with me. An explanation why Joel was so sick and what would make him better—a course of treatment. I thought the latest MRI or the various specialists conversing with one another would give us, give me, some definitive action to take that would help Joel recover from this mystery illness that landed him in the ICU. Instead, the doctors had me reeling with fear and uncertainty. If Joel was critically, no gravely, ill, couldn’t they help him?
“We’re in a hospital!” I screamed. “You’re all doctors. If Joel is sick, make him better!” They exchanged side glances at one another; it seemed each one was silently willing the other to say what they couldn’t bring themselves to tell me. The infectious disease doctor wiped his hand across his face. The head of the ICU covered his mouth with his hand and continued to stare at his feet.
Joel’s MS doctor, who had no privileges at this hospital, but whom I had fought to get approval for so that she could at least evaluate his chart and talk to the other doctors, finally looked at me with tears in her eyes. “We don’t think we can.”
I first met Joel in 1987. It was in the lobby of Atlantic Records on Los Angeles’s Sunset Strip, where we both worked. Joel was four years older than me, and this was his “real” job, while for me, it was my summer job during college. I knew immediately that he was someone I would like when I saw his long rocker hair, shorts, combat boots, and the Who T-shirt he was wearing. I knew it was love when he told me a joke a few days later. We were in his “office”—the mail room. I was sitting on the counter, my legs swinging beneath me; Joel was printing mailing labels when he stopped to look at me.
“Where do cantaloupe and honeydew go in the summer?” he asked.
“Where?” I said.
“John Cougar Mellencamp.”
He paused, waiting for my reaction, and a smile came to his face, his green eyes twinkling. I couldn’t help but laugh. In fact I laughed so hard, I started crying. He laughed, too.
With that silly joke, I decided that I wanted to marry someone just like him one day. I never thought it would be him, but right then and there, he set the bar high.
He was cool. He was funny. He was Jewish.
It was a trifecta that had otherwise escaped me. I was in my first serious relationship at the time, and Joel was living with his girlfriend. While we shared an unmistakable connection, our friendship was platonic. At night we’d see each other at shows. During the day at work we’d hang out in the mail room, and he’d play his current favorite songs . . . “What’s My Scene” by Hoodoo Gurus . . . “Alex Chilton” by the Replacements . . . “World Shut Your Mouth” by Julian Cope.
Having grown up in both New York and Los Angeles, I had been exposed to the arts at an early age and had eclectic taste in music. I could hol
d my own, but Joel was more than just a fan of music, he was a connoisseur. His knowledge extended far beyond top 100 hits, band lineups, and genres—he knew everything. He knew alternative music before it was called alternative. He knew B sides and obscure facts about recording sessions and aspiring musicians. He knew tour dates and which A&R reps signed what bands to which labels. He knew and saw bands before they even became bands. He understood everything about the business, and it was his knowledge, interest, and curiosity that gave him joy.
We would have lunch together almost every day. We would pile into his Volkswagen Karmann Ghia and head down the strip for tacos, or a quick run into Tower Records on Sunset Boulevard to check inventory or just hang out—sharing our favorite finds.
As summer came to an end, I knew that Joel was a lifelong friend. He continued working at Atlantic; I graduated college, where I got my bachelor of arts degree in English, and moved to New York City to work in the creative department of an ad agency. But after a few years, the promotion I was hoping to get went to someone else. My new boyfriend and I broke up. I knew I wanted to write; I just wasn’t sure that advertising was for me. I thought I’d try my hand at screenwriting and decided to move back to Los Angeles. As soon as I arrived back home, my best friend from high school invited me to a Dodgers game.
I was never into sports but had been to Dodger Stadium once before. It seemed bigger than I remembered. I handed over my ticket and walked through the turnstile. I looked up briefly to get my bearings and immediately saw a familiar face looking at me. It was Joel. His green eyes met mine, and my heart suddenly surged in a way it never had before. I was barely back in town. My life seemed in flux. Had I run into Joel that same night at a club, for instance, seeing a band, listening to live music, it would have made much more sense. This seemed so out of context, so strange and surreal.
Joel and his friend walked over to us. Joel and I hugged; it felt like no time had passed, even though we hadn’t seen or spoken to each other in a couple of years.
“This is so weird!” Joel smiled. “These aren’t even my seats!”
“I can’t believe I’m seeing you!” I said, laughing.
“When’d you get into town?” he asked.
“I literally just got back,” I said. “I live here now. Again.”
“Really? So New York didn’t cut it?” But I couldn’t answer. I was too shocked to see him.
“Come on.” My friend tugged at my arm. “Let’s find our seats.”
“Is it OK if I give you a call?” Joel asked.
I wrote down my phone number on his ticket stub. Our fingers touched when I handed it back to him. It was as if the stadium was suddenly empty and it was just the two of us, taking each other in. I didn’t want the moment to end.
“It’s really great running into you,” he said.
My friend and I left to find our seats, but when I turned around for one more look, Joel’s eyes were still on me. He was smiling.
We had been married nearly ten years when Joel started having trouble with his legs. He had left to play in his weekly basketball game. I had a busy day of filming, then made dinner for our family of three, and finished off with our daughter Sophie’s nighttime routine of bath, books, and bed. The kitchen was now clean, the dogs were asleep, and all was quiet. It was finally my cherished alone time. I poured myself a glass of wine, grabbed a handful of chocolate chips, and was planning on settling in with The Real Housewives of New Jersey, when I heard the front door open. I was surprised. Joel had been gone for only about thirty minutes.
“Hun?” I asked.
He walked toward me, deeply distressed.
“Something’s wrong,” he said. “My legs. They’re not working. It’s like I see the ball moving down the court, I tell my brain go get it but I can’t.”
It took me a moment to process this.
“What? What are you talking about? Are you in pain?” I asked.
“No. But it feels like I can’t play ball anymore. I try but I just stand there watching everything happen around me. I can’t move, no matter how hard I try.”
None of this made sense. Joel was healthy. He was an active guy and physical exertion meant everything to him. He played basketball and softball at least once a week. He’d also play racquetball a few times a month and went to the gym every morning. He had an optimistic and sweet disposition, but this inability to move, this disconnect between his brain and body, was alarming.
He sat down, deep in thought. I sat down next to him, leaned my body into his. He looked at me.
“Something’s wrong,” he repeated. “Something’s really wrong.”
I put my arms around him.
“OK, well, if something’s wrong, we’ll figure out what it is.”
Joel nodded in agreement, but I could tell that his mind was racing.
He started to meet with one neurologist after another, but because Joel looked like the picture of health, no doctor took his complaints seriously. He was young, not even forty-two. He had always maintained a healthy weight, he didn’t smoke, he had no reason to be in a doctor’s office. Each doctor visit was frustrating, and figuring out the cause of his issues took some time. But Joel was determined—he knew something was wrong, he felt it in his soul. Finally, a new neurologist did an MRI of Joel’s back and saw a bulging disk. He prescribed physical therapy.
“It’s not making a difference,” Joel complained a few weeks into treatment. “Anyone my age who gets an MRI of their back is going to find out they have a bulging disk somewhere. It’s bullshit!” He was suffering. Every week he’d show up for basketball, hoping for a different outcome, but then he’d be home early again. “I’m just going to stop for a while,” he said. “Give my legs a break.”
It was during this break from basketball that another symptom appeared—occasional numbness and tingling in his feet. Another MRI was ordered, one that would provide insight into anything that isn’t typically seen in a healthy person. Sure enough, these results were different.
Joel was sitting in our home office one night. Sophie was having a bath.
“The doctor called,” Joel said. “I need to tell you what’s going on.” I knew by the tone in his voice it was serious. I sat down in the chair across from him. “He gave me my MRI results.”
“OK,” I said. “We’ll deal with whatever it is.” But my voice started to crack, and I felt tears pooling up in my eyes. Joel looked at me, anger flashing across his face.
“Don’t!” he said. “If you start to cry, I won’t get through this!”
So I held myself back. I took another deep breath. I reached for his hand. He looked at me and said quietly, “There are two lesions on my brain, and one on my spinal cord. That means it’s MS. I have MS.”
A million thoughts swirled around my mind as tears started streaming down my face. I tried to wipe them away; I didn’t want Joel to fall apart. He squeezed my hand harder.
“I’m scared,” he whispered.
And then I really started to cry. I got up, and I hugged him. I held him tight.
I could still hear Sophie splashing around in the tub.
“I love you,” I said to Joel, holding on to him.
“You,” he said back quietly.
You was our shorthand. It was our call and response to I love you.
Joel’s eyes started to tear up. Both of us knew about MS, and we knew it well. Not only did his father’s best friend have it, but so did my dad, who at that time was mostly symptom-free. Joel and I just never put it together. It’s like when you’re looking for your keys for a half an hour and realize you’ve been holding them the whole time. Of course it was multiple sclerosis. The problems with his legs, the tingling, the body feeling disconnected from the brain . . . we must have been in denial.
After that night, we tried to maintain normalcy—get Sophie up and ready for school, keep her on track. Joel went to work every day, but it was impossible for him to concentrate. We were in shock. Joel, typically an “
up” person, was down in a way I had never seen. He was quiet, remote; he went inward.
“I don’t want to end up in a wheelchair,” he’d say. “I want to dance at Sophie’s wedding . . . I want to travel as a family while I can still walk.”
“You’re going to be OK, hun!” I’d say. But neither of us was sure.
At the time, the actress Selma Blair was years away from announcing her diagnosis, but some celebrities had come out with the fact that they, too, had MS—Montel Williams, Jamie-Lynn Sigler, Jack Osbourne. In a weird way, we took comfort in this. Joel did not want to end up like Richard Pryor, Annette Funicello, or Teri Garr. They were the public faces of MS at its worst, and what we feared could be Joel’s future.
MS is a complicated disease that impacts the central nervous system. Brain communication to the body breaks down due to damaged myelin (the “coating” that surrounds nerve endings), causing a host of symptoms, which for Joel at that time affected his balance and mobility. The progress of the disease, as well as its severity, is unpredictable and manifests differently in every single person diagnosed with it.
After waiting a few months, Joel was seen by a renowned MS specialist. Being in his care meant there was a team of support behind us. One doctor, who we liked very much, became Joel’s point person. She was also the one who would be monitoring his medication. I went with Joel to every doctor appointment, and he started to keep a journal of his symptoms to review at every meeting. After some deliberation, we agreed that Joel would start on Copaxone, which at the time was considered one of the “better” drugs, believed to slow down the progression of MS and alleviate some of its symptoms. For Joel, this worked great for a number of years . . . He would give himself the prescribed dosage of one shot, three nights a week.
“Fuck you, MS!” he would say with each night’s injection.
Ice . . . shot . . . Advil. That was the routine. We got used to it. There were good days and bad, for sure, but Joel was coping. The meds were keeping things at bay. Joel was active. He rode his bike to work, saw live music. He was living his life, and life was good.
Widowish: A Memoir Page 1