Find a Place for Me

By Deirdre Fagan

"...This memoir will burrow down deep into your heart, finding its own place of comfort there. I dare you to be able to put it down."—Noley Reid, author of Pretend We Are Lovely

Find a Place for Me is a memoir about facing a marriage's last act—a spouse's death—as a couple united in mind and holding hands. Deirdre and Bob are married eleven years and have two young children when forty-three-year-old Bob is diagnosed with Amyotrophic Lateral Sclerosis (ALS), also known as Lou Gehrig's Disease. ALS determines the journey their marriage will now take, but Bob and Deirdre are resolute in how they will traverse their remaining months as a couple. Chronicling Bob's illness, Find a Place for Me is also the love story of a happy marriage filled with humor, honesty, and essential conversations. In this moving, tragic, and surprisingly funny book, Deirdre and Bob raise a glass to love and the life each of them has left while learning how to lovingly say goodbye.

• Language: English
• Publisher: Pact Press
• Release date: Nov 1, 2022
• ISBN: 9781646032846

Deirdre Fagan

Deirdre Fagan is the author of a collection of short stories, The Grief Eater, a chapbook of poetry, Have Love, and a reference book, Critical Companion to Robert Frost. Fagan is associate professor and coordinator of creative writing in the English, Literature, and World Languages Department at Ferris State University and has also published in numerous academic and literary journals. Meet her at deirdrefagan.com

Book preview

Praise for Find a Place for Me

"Find a Place for Me roughrides grief, anxiety, and an unflagging humor in such a beguilingly fresh approach to love and saying goodbye. This memoir will burrow down deep into your heart, finding its own place of comfort there. I dare you to be able to put it down."

—Noley Reid, author of Pretend We Are Lovely

"Find A Place for Me is a love story more than anything else, the story of a marriage as one spouse succumbs to a terminal illness. As Fagan watches her husband’s daily decline, she filet[s herself] one layer at a time, doing everything she can to honor his wishes and savor the moments left, while trying to come to terms with a life after his leaving. She is a reluctant survivor, one with a mourning season in the fall, during which she’s lost both parents, two brothers, and now her beloved Bob. This memoir is the answer to the title’s command, a place where Bob becomes legendary; Fagan pokes pinholes of light by telling their story of love and death in painstaking honesty and with surprising humor. She reflects on liv[ing] death day-to-day and then surviv[ing] the end of love, forming a broader commentary on how we judge love, and how death confounds us. Find A Place For Me becomes a primer for living life head-on, instead of putting your shit in your back pocket and pretending it’s not there.

—Katie Kalisz, author of Quiet Woman

"Find a Place for Me is a luminous and loving portrait of a young family who must quickly pivot to a new normal when dad is diagnosed with ALS. Deirdre Fagan’s sweet and straightforward prose is like a conversation with a close friend. It is less than one year that Fagan travels ‘the long walk towards Bob’s death and our departure from each other.’ And in that span of time she conveys not only her own challenges but lets us get close to Bob, whose courage and humor resonates and lingers. This memoir is a journey of a terminal illness where every page is very much about being alive."

—Donna Kaz, author of UN/MASKED, Memoirs of a Guerrilla Girl On Tour

"At its heart, Find a Place for Me is a love story. Deirdre Fagan chronicles her family’s heartbreaking, ten-month journey of caring for her young husband, Bob, as he battles ALS. Juggling her roles as caregiver, wife, lover and mother, Fagan paints a portrait of this intimate time with honesty and heart. In the end, their couplehood exemplified the code by which Bob lived—’with passion, honesty, strength, and an appreciation for each other and life itself.’ This is a memoir that will stay with me."

—Susan Pohlman, author of Halfway to Each Other: How a Year in Italy Brought Our Family Home

This book transcends the monolith of terminal illness, chronicling grief through the everyday rituals and meditations of marital intimacy. It’s a story of death illumined on all sides by brimming life. Deirdre Fagan has written something profound in its honesty and humanity, celebrating a love that was—is—profound.

—Adam Schuitema, author of The Things We Do That Make No Sense

"Lyrical. Raw. Unflinching. Deirdre Fagan pulls no punches in Find a Place for Me, her searing memoir of the ten months she and her young family get on with the business of day-to-day living in the shadow of her husband’s death sentence after being diagnosed with ALS. Faced with the certain loss of her ‘one and only,’ the bereft protagonist who has already survived the loss of mother and father and brothers, sends up smoke signals: ‘They seek the help of others. They signal life. They signal danger.’ Make no mistake, Find a Place for Me signals life. How do death and grief morph into a romance that affirms life itself? With honesty, tinged with Irish black humor and a dab of Nietzsche, and the strength of a love that defies human limits, that’s how."

—Kathleen J. Waites, author of Sarah Polley’s Documemoir Stories We Tell: The Refracted Subject

"In Find a Place for Me, Deirdre Fagan takes an astonishingly honest look at living with and coming to accept her husband’s impending death from ALS. The book is unflinching in its honesty and ranges from the poetic and philosophical to the practical and humorous. The author pulls no punches, whether she is talking about sexual relations between the couple, her personal high points and low points, or the frank discussions she and her husband had about their futures. With honesty, dark humor, and the love of friends and family, the author and her husband ‘get busy living’ right up until the end and in the process face all the things most of us fear to even consider."

—John Cullen, author of Town Crazy

"As much as Find a Place For Me is a book about loss and terminal illness, it is also a book about love. Fagan’s recounting of discovering her husband’s illness, becoming a caretaker, raising children and holding down a job will resonate with anyone who has struggled to keep it all together in the face of such grief. This book brings humor, honesty, vulnerability, and, ultimately, hope in the face of loss."

—Dina Gachman, author of So Sorry For Your Loss

Find a Place for Me

Deirdre Fagan

Pact Press

Copyright © 2022 Deirdre Fagan. All rights reserved.

Published by Pact Press

An imprint of

Regal House Publishing, LLC

Raleigh, NC 27605

All rights reserved

https://pactpress.com

Printed in the United States of America

ISBN -13 (paperback): 9781646032839

ISBN -13 (epub): 9781646032846

Library of Congress Control Number: 2021949149

All efforts were made to determine the copyright holders and obtain their permissions in any circumstance where copyrighted material was used. The publisher apologizes if any errors were made during this process, or if any omissions occurred. If noted, please contact the publisher and all efforts will be made to incorporate permissions in future editions.

Excerpts from MDA’s ALS Caregiver’s Guide, published in 2013, are used with permission from Muscular Dystrophy Association, Inc.

Cover images © by Suzanne Tucker/Shutterstock

Cover design by C.B. Royal

Regal House Publishing, LLC

https://regalhousepublishing.com

All rights reserved. No part of this publication may be reproduced, stored in a retrieval system, or transmitted, in any form or by any means, electronic, mechanical, photocopying, recording, or otherwise, without the prior permission of Regal House Publishing.

Printed in the United States of America

Dedication

For Maeve and Liam,

Liam and Maeve

Note

I have told this story from memory while listening to Bob’s voice in my mind. Some conversations have been constructed, and some names, locations, identifying characteristics, and details have been omitted or altered to protect the privacy of those depicted.

Prologue

Six Months into the Diagnosis

If you think you aren’t going to be smoking when I die… Bob’s words trailed off. I immediately thought, Smoking as in being reduced to a pile of ash? A pile of cremated remains he would be, and I most certainly would be smoking, both literally and figuratively, as I burned down. I was already burning down, like a lit cigarette. When he did die, I knew I would be sending up smoke signals, hoping someone would see them and somehow rescue me. I didn’t know how I could ever survive this, this thing that was happening to us, happening to Bob.

Six months into Bob’s diagnosis, I broke down and bought a pack of American Spirit cigarettes. At least they are not filled with all those additives, I convinced myself. They can’t be that bad, right? Two weeks into smoking cigarettes only at night after the kids had gone to bed, one of many crises made me say aloud to myself, I deserve a fucking cigarette when I want one, and start smoking in front of the kids. I was still only smoking three to four a day, but sometime mid-afternoon I’d walk out onto our Queen Anne porch in the sweltering summer heat, usually with an iced coffee also in hand, and light one up. The first time my son, Liam, saw me, he just stared at me. Aged nine, he was more enthralled than disgusted. I looked at him and said, What? He just stared blankly at me, shrugged his shoulders, and said, I’ve just never seen you smoke a cigarette before.

My daughter, Maeve, aged four, on the other hand, before long announced, while climbing onto my lap, sweaty from the Midwestern heat, When I grow up, I’m going to smoke cigarettes too. I told her I didn’t want her to because they are icky. After a few more days of watching me with curiosity, Maeve announced, I don’t like when you go out on the porch to smoke, which ignited in me the deep guilt I felt for indulging in the practice in the first place. So, the following Thursday I vowed to my daughter and one of my healthiest friends, Kate, that I would quit the habit, only weeks after I’d begun it. But it was now a Tuesday night late in the summer and I was standing, staring at Bob across the living room, in the lift chair that had now become his primary residence, and giving vocal debate to whether I should buy a pack while I was out.

"I really want a cigarette, but I probably shouldn’t buy any. I decided I would stop. But I want one. I really want one. Bob looked at me as though the answer was obvious, as certain as his diagnosis. Quickly dismissing my concerns about the kids, about my health, he said: I think when you are going out to buy your husband diapers, you should also be able to buy yourself some fucking cigarettes. I tilted my head to the left and my eyes upward. After some thought, I shrugged my shoulders with a degree of doubt and said, You have a point. Shortly thereafter I responded: You are right."

And that was just it about Bob. He always saw things so clearly, so plainly. He called it, whatever it was at the moment, like it was. And he was almost always right.

Bob was sitting right next to me when I first began to write this memoir in that recliner lift chair he’d been bound to for months, with the power chair, lent by the Muscular Dystrophy Association, he’d become so dependent upon a few feet from his raised legs. It was August 5, 2012, five days before our eleventh wedding anniversary and just over seven months since he had been diagnosed with amyotrophic lateral sclerosis.

Smoke signals. They signal danger. They request the presence of others. They seek the help of others. They signal life. They signal danger. They signal life. In my life, smoking cigarettes had nearly always signaled danger, or been the result of it.

1

Foreign Tongue

Amyotrophic lateral sclerosis. It’s another language, its words so foreign to a layperson, even a layperson with a doctorate in English. I know why they started calling it Lou Gehrig’s disease. Not just for all of the reasons they put on the Muscular Dystrophy Association (MDA) website, such as Lou, who also had the disease, was amazing, or because his wife was also amazing, or because Lou made that awesome Luckiest Man speech, but because most people just look at you with a blank stare when you say it, like you have just said Suzy sells seashells down by the seashore. It’s ironic that amyotrophic lateral sclerosis is a tongue twister, given that before long, the people who get it cannot twist their tongues enough to utter a single syllable, let alone eleven. And it certainly doesn’t sound like something you die from. You die from cancer. You die from a car crash. You die when a plane is flown into the Twin Towers. You die in war. You die of a heart attack. You don’t die of something called amyotrophic lateral sclerosis. That’s something they check you for in gym when you are in fifth grade. That’s something that they should just point out, like a curve in your spine, and send you home with or without medication for.

In fact, when the disease was first put on the table, this is exactly how I heard it. I heard them say the words, Lou Gehrig’s disease, or rather, I heard Bob say it. And I saw the words amyotrophic lateral sclerosis (ALS) come up on the computer screen when I typed twitch in arm in Google, but none of it registered. From December 11, 2011, when my husband told me he had a twitch in his arm and made a doctor’s appointment to have it checked out (and I mocked him for such silliness), until December 29 when he was diagnosed, I uttered the words, but I didn’t hear them. I didn’t slow down to read what they meant on the screen. I just pushed them and it to the back of my mind as I continued to decorate the house and bake cookies and shop for Christmas for our two children, then three and eight. The furthest thing from my mind was that my husband was dying. Or at least I thought it was.

Looking back now, I realize I was in the deepest denial I’ve ever experienced in my life, and raw and painful energy was simmering just beneath the surface. If there are parts of our brains responsible for certain things, I locked away the part that could learn anything about this disease, and I went on with the part that thought what we were talking about was something that is really not a fun diagnosis but isn’t something that will kill you. I honestly think that I spent those eighteen days in December 2011 thinking ALS was some sort of syndrome that caused inconveniences, occasional pain, and maybe some mild suffering in a person’s life, but that is all. Sure, you have it forever, but you barely notice it, and you treat it. It acts up now and then. I actually didn’t know anything about any such diseases either, but I had heard people tell me they had various ailments and they went on living, and so in my mind, without acknowledging it by name, ALS became something along the lines of hypothyroidism. I thought that whatever Bob had might make me cook differently, or require him to take some medications or change his lifestyle, but whatever it was would in the end only be occasionally uncomfortable for Bob, but not deadly. And despite my education and being a curious person, that’s how I left ALS in my mind and in my conversations with other people from December 11 until December 29. The people we spoke to seemed to also go along with the charade. They didn’t inform me about ALS. They probably figured that I, a researcher and Bob’s wife, already knew. They assured me that it couldn’t be ALS. They played along, as far as I knew. If they were troubled, they were doing a good job of being encouraging and hopeful and sparing me the gory details of this horrid disease.

When I was an undergraduate studying logic, my father used to joke: Lou Gehrig has Lou Gehrig’s disease. Coincidence? I think not. It always made him chuckle and got a laugh of recognition out of me at the weak thinking implied in such an attempt at reasoning. This joke was pretty much all I knew about Lou Gehrig or the disease at that time.

No matter how much I press my memory, I cannot find any measure of reality about the disease in those few weeks. We talked to everyone about Bob’s twitch and said he was seeing doctors and that Lou Gehrig’s disease was on the table, but at no point during that period did I ever stop to do more than say those words. I said them. I ignored them. I researched nothing. I repeated over and over the same lines. I baked cookies and entertained guests and went on.

But some part of me must have been terrified, because I remember spending, for example, all of the two-hour holiday party at my university wandering from table to table greeting people, and when someone asked me what I would be doing over our academic holiday break, I would tell them I wasn’t sure because Bob had a twitch in his arm, they didn’t know what it was, and there would be tests. I said it over and over in those few hours, clearly carried by some strong current that made me say it and say it, and sort of nod as people said it would be fine, and yet that fear, that deep unknowing, never caused me to seek the words on the screen that would tell me what ALS was or what it would do to decimate my husband and our family. When a colleague stared solemnly at me and assured me she was sure it would be fine, I agreed, the way I might agree about how the food preparations would go over with guests. I didn’t even think about the way she looked at me, until weeks later.

I wrapped presents for both of the kids and Bob. I did everything. I made fancy meals for the holidays with all of the fixings, even though Bob and I were usually the only ones who ate three quarters of it. If I made Thanksgiving dinner, which was almost always just for the four of us, there would be turkey, and stuffing with sausage and sage and water chestnuts and onions and mushrooms, and mashed potatoes, and two kinds of vegetables, usually Brussels sprouts and asparagus or green beans and broccoli, and homemade rolls, and homemade pumpkin pie, made from a real pumpkin with real cream, and homemade gravy and homemade cranberries. When I first tasted homemade cranberry sauce when I was twenty-one and the berries were still partly intact and literally popped in my mouth, I wondered where they had been all my life.

Bob loved food and he especially loved my food, so I would do all of it, even if Liam would eat only the turkey and rolls, and even when Maeve wasn’t yet born or later, not eating solid food. I don’t remember what we had for Christmas that year. I’m sure I went all out, though, because that’s what I did, and it’s also what I would have done to pretend everything was fine, just fine. I may even have printed a menu in a fancy font like at a white-tablecloth, five-star restaurant. I did that sometimes.

It wasn’t until we canceled our vacation to Florida to go two hours away to St. Louis to see a specialist that something really started to rise in my consciousness. I had nearly lost it with Liam on Christmas morning when he didn’t seem as excited as I wanted him to be about getting a miniature Southwest Airlines plane and tickets to Florida for the new year to see his dad’s family. We cut the Christmas video recording so I could yell at little Liam about how entitled he and his sister were acting to not be excited about such a thing. Liam was eight at the time and his sister three. Liam was without a mean or selfish bone in his body, but when we both walked down the sixteen steps from the second story on Christmas morning and he saw all of the loot around the tree for the first time, and he turned to me and said, It’s not as much as last year, without any tone at all, matter-of-factly, like his dad, like a mere observation, what I thought he was saying was, It’s not enough. You haven’t done enough. You aren’t enough.

Looking back now, I realize Liam was simply making a comment. He was always a very observant kid, and I now know he was just making an observation. He didn’t have to tell me that’s what he was doing—I’ve never asked him and he likely does not remember—but knowing him, knowing his tone, the expression on his face, and recalling all of that so clearly as we stood on the stairs, I know he meant no judgment or criticism at all. He was just noticing something. And he was right. It wasn’t the same as last year. It wasn’t the same at all.

But it wasn’t until the phone rang on December 28 and the nurse at our local doctor’s office, our primary care physician’s office, told us an appointment had been scheduled for eight a.m. the next morning in St. Louis, if we could get there in time, that my body began to prepare for the horror some part of me must have been burying in my gut all along. While my mind still hadn’t fully kicked in, when Liam came in while we were hurriedly packing for the trip and ticking off all the practical things on the list—diapers and wipes for Maeve, who still wasn’t potty trained, sippy cups and snacks for both of the kids, wine for us in the evening, swimsuits for the hotel pool—and asked us to put a bell on the new bicycle Bob’s dad had bought him for Christmas (and that we had hidden under a sheet Christmas morning), I blurted out, angrily, viciously, as surprised as he was by what was coming out of my mouth: Your father might be dying and all you can think about is a bell on your bicycle! LOOK. AT. US!

Following an awkward silence, during which I felt shame and disbelief about what had come out of my mouth, Bob calmly explained, Now isn’t a good time, buddy. We can do that when we get back, okay? Why don’t you help me and Mom get things loaded into the van?

2

Numb Drive

On the drive to Barnes-Jewish Hospital, I reached over and stroked the back of my husband’s neck and his soft, clean-shaven bald head, as I so often did when he was driving, and asked him if he was worried. Bob said, No, not when we don’t know if there is anything to be worried about, and I stared at his profile, amazed.

I believed Bob. I trusted him. I had never trusted anyone the way I trusted Bob. He had never hurt me—well, at least not since the first few months of our relationship when we were both working through our own shit. He had lied about being previously married, out of shame, because he thought, as a divorced man, he had been a failure as a husband. After we worked through that period of trust, things were completely different. Since then I had trusted him with every thought, every feeling I had ever had. There were no secrets in our relationship; there wasn’t even anything to be withheld. I had never been more secure than I was when I was with Bob, or more content. If he wasn’t worried, then neither was I. I told the kids, exuberantly, turning my head toward the back seats, If Dad goes to the doctor and everything is okay, we can spend a few days in St. Louis, since we couldn’t take the plane to Florida. We can hang out at the hotel and go swimming! It will be a mini-vacation!

The next morning, everything would change forever, and I wouldn’t even begin to realize it until I dropped off my six-foot-five, 240-pound husband at the automatic doors of the looming building. As I watched him from behind, his broad, strong figure walking into that imposing building in his cargos, T-shirt, flannel shirt, and hoodie, I thought, There is something wrong. Your husband wouldn’t be here if something weren’t wrong. It was the first time I had let in any fear. Watching Bob walk through those glass doors, before I pulled away with the kids in the back seat, was like watching him leave me and enter the gates of a heaven (or hell) I didn’t even believe in. Something in me sank. Something in me finally knew.

My mind racing and beginning to process the previous few weeks differently, I drove directly back to the hotel with the two kids. They entertained themselves with cartoons and playing inside closets, and our daughter who couldn’t read pretending to read the Bible and the Book of Mormon, while I sat at the small desk in the room and read and read and read on the laptop about Lou Gehrig’s disease, trying desperately to memorize the three words amyotrophic lateral sclerosis. I couldn’t retain the words. I said them over and over in my head, mispronouncing them. I had been saying Lou Gehrig’s disease when people asked. I hadn’t known the actual words because I didn’t think they had been worth remembering. Confession: I didn’t want to know them. I didn’t want to think about it.