Interview by Diane Gottlieb
Find a Place for Me: Embracing Love and Life in the Face of Death is a memoir about facing a marriage’s last act 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 (excerpted from jacket copy).
Deirdre Fagan is a widow, wife, mother of two, and associate professor and coordinator of creative writing at Ferris State University. Recently featured in Newsweek, Fagan is the award-winning author of the memoir Find a Place for Me: Embracing Love and Life in the Face of Death (Nov. 1, 2022), which earned a Living Now Bronze Award, and is an Eric Hoffer Award Category Finalist. Fagan is also the author of the short story collection and Next Generation Indie Book Award Finalist The Grief Eater (2020), a poetry chapbook Have Love (2019), and a reference book, Critical Companion to Robert Frost (2007). You can find her at deirdrefagan.com
Diane Gottlieb: Congratulations on Find a Place for Me! The book chronicles yours and your husband Bob’s journey through ALS, from the first twitches in his arm to his diagnosis to his death. What made you feel you needed to write this story?
Deirdre Fagan: There are several reasons. ALS still doesn’t get enough attention. I had no knowledge of ALS when Bob first had his twitch. I’d heard of Lou Gehrig’s disease, but I didn’t even really know what it was or what it did. So that’s certainly part of it. But the other part is that Bob was a very unusual person. He was a philosopher, and the way he approached his death was very bold and brave, head on, which is the way he approached life as well. The decisions we made as a couple throughout his illness were not ones I had witnessed in the world very often, nor had I heard about people approaching death in this way.
After Bob died, many people told me Bob not only helped them learn how to live, but how to die. I thought that was important to bring forward. I also think the book brings forward some honest things about communication in a relationship, how you can face things together instead of separately, and how that makes you stronger as a couple.
DG: This memoir could be considered a primer on how to die, as well as a primer of how to have a relationship. Tell us about some of the open, honest conversations you two had and about how you used dark humor to help cope.
DF: I’ll start with the trust we had in each other. ALS is very difficult to diagnose and often takes a long time. You’re told the standard lifespan after diagnosis is two to five years. It’s often much shorter. If it takes two years to get diagnosed, you’ve lost half of the lifetime they’re predicting for you. Bob essentially diagnosed himself before anyone else would. He saw the writing on the wall, he saw his symptoms. He was resolute, “this is what I have.”
When he told me, I believed him. I trusted him more than a doctor. Within 24 hours he also told me that he wanted me to go on and love again. I had whiplash! Bob was already several steps ahead of me.
What he wanted for me was incredibly generous and forward looking in a way that many people are not when faced with these things. But it showed his focus. There was this sense of leaving ourselves behind and taking care of each other. I wasn’t there for a while. I had to catch up with his thinking. Then I did and was with him. I needed to love again. And that was part of our journey.
He also told me that I’d have to be honest with him about how his disease was progressing because he may not see it. Those are really hard conversations to have with someone. Who wants to tell somebody, “That’s it, you can’t take stairs anymore”? It was really difficult regularly being the bearer of such news. But we put each other in positions of honesty. “I trust you to be honest with me and tell me these things” and vice versa.
To survive this immense pain on a daily basis, the absolute suffering, you need pinholes of light. You need relief from that focus. So, we also got good at telling jokes—dark jokes. That was something we grew into. Earlier in his diagnosis, it was much harder to laugh.
DG: You were not a stranger to loss at the time of Bob’s diagnosis.
DF: No, I wasn’t I lost a brother who died by suicide when he was 25 and I was 18. Then my mother died of cancer when she was 51 and I was 23. When I met Bob in my early thirties, we both had the losses of previous relationships and marriages. Six years into Bob’s and my relationship, I lost my father and my other brother, two weeks apart. My father had a heart attack and my brother’s liver went out. He had drunk himself to death.
Then when Bob was diagnosed, it was sort of, I cannot do this anymore. I am done. How can this be happening? It was five years after we’d lost my dad and my brother that Bob was diagnosed. Bob felt horrible because he knew what I’d been through and didn’t want me to have to go through this again so soon.
But at the same time, he said, “you’ve done it before, you can do it again. I believe in you.”
DG: You say in the book that the losses compile, so it’s a cumulative grief, I’m sure. But can past losses help you deal with future losses?
DF: That’s a really interesting question. I think every grief is individual because your relationship to that person is so individual. Yet it is cumulative because, once you’ve felt so completely horrible, so leveled by grief, and then it happens again, it brings back all those earlier feelings of grief, as well as the new ones. The more you add, the more overwhelming grief can feel. On the flip side, if you have been through loss and you have found your way out of it, there is somewhere inside the belief that it won’t always be like this, you won’t always be this miserable.
I had a horrible time after each loss that I experienced, but I also was able to survive them.
I was not ready to hear Bob when he first told me, I would survive this too. But he was right, and here I am on the other end of it. I’m happily remarried. I’ve created another honest and open relationship with someone.
DG: Someone that Bob knew too and with whom he encouraged you to pursue a relationship.
DF: Or at least pay attention to. He was like, I see something in the way you converse with each other. I see how you interact. Maybe you should notice that.
DG: That was one very moving scene in the book, when he overheard the two of you speaking.
DF: It still stings me because it’s one of those moments where he was starting to see, from the outside, me in a future life without him. Even though that was inevitable, and even though that’s what he wanted for me—that is, to survive and go on and live and love again—it was still heartbreaking. When he heard our voices, it brought it really close to home for him, and it was crushing. When I think about it, I get teary because I didn’t want him to feel that pain.
DG: You talked about him dealing with ALS and dying through the mind of a philosopher.
DF: You can’t study philosophy without ruminating a lot on death. He was at ease with the fact that it was going to happen. What he wasn’t at first at ease with was when. But he hated the way people would look at him. He said, “the way they look at me, you’d think they don’t realize this is going to happen to them too. Everybody’s getting off the bus. I’m just getting off the bus sooner.”
He would actually look at people and say it just like that, “you know you’re getting off the bus, right?” Then he would kind of chuckle and then they would get this expression of awareness and kind of laugh with him. But there’d be that one, two beat of, “oh shit, I didn’t realize I was getting off the bus. Or I was so focused on you getting off the bus, I forgot I’m also getting off the bus.”
DG: You and Bob were very honest with each other. You’re also very honest with readers. You talk about sex and shit (literally), and there’s no sugar coating. Was it important for you to put in some of those not-so-sexy details?
DF: There are some places that were hard for me to talk about, but a memoirist is only as honest as she writes. She connects with her readers through that honesty. We don’t trust people who seem like they’re withholding. So, it was really important to me to bring it all forward. If I didn’t talk openly about those things, you as a reader would miss part of the intimacy we shared. I also wanted to emphasize that ALS affects muscles you can control, not those you can’t. We were able to make love until the end of Bob’s life, I just had to do more and more of the work.
As for the actual shit, I wanted to bring attention to the caregiving. Bob was very upset that he became so dependent upon me in these ways. But for me, it’s like, if I love you, I don’t care if you’re my best friend or my lover, I will wipe your butt if that’s what you need. I just don’t see it as a thing. We do this for our infants. Why? Because they can’t do it for themselves. We’re going to take care of them. As adults we feel like, oh, we can always take care of these things, but we can’t. With our aging population and people living longer, more often than not, there’s going to be a point in someone’s life where they’re going to need help bathing or they’re going to need help going to the bathroom. It might be your parents. It might be good friends. It might be your partner. It might be your child.
I wanted to address how hard that is on the person who needs the help, because it was really hard on Bob. But also how those of us who love them want to do it. People most often want to help, I think.
DG: So now you have a book of short stories, a poetry collection, and a memoir.
DF: I have a book of short stories, a chapbook of poetry that’s out, and I just completed a full-length poetry collection and am seeking a publisher for it.
DG: How do you choose in which genre you write?
DF: I make the decision of whether it needs to be told as a true story or whether it can be fiction or poetry. With poetry, it’s more tightening, being concise, and playing with the language with greater precision, and compacting those images, but for me also blurring those lines between fiction and nonfiction. When I turn to fiction, it’s more that I want to tell this story, play with those characters, see how far I can take them. When I turn to telling a true story, it’s about whether the story brings more to readers if they know for sure it’s true. Obviously with this book, it cannot be a fictional story and carry the same messages or have the same meaning as saying people really live with this and can choose to live with it in this way.
DG: This is your first memoir. What were some of the craft challenges you faced that were different from those you encounter when writing fiction or poetry?
DF: When I write poetry or fiction, I tend to stay focused line by line during the initial draft. While material is cut and refined as I revise, the piece also tends to be crafted rather succinctly to begin with, since it is my nature to write in a tight style. With my first draft of the memoir, I was much more concerned with telling the entire story, which initially included details belonging to a far longer timeline. My first draft was over five-hundred pages; my second cut it down by half.
DG: Find a Place for Me has already won several awards and many honors. How does it feel having your words receive such widespread acclaim?
DF: I had an article appear in Newsweek’s My Turn a week ago, and it was eye-opening to watch the article have a life of its own, as it was paraphrased and translated into multiple languages in the course of a few days. The week before, I learned the memoir had received bronze in the Living Now Awards aging/death and dying category. I am humbled and, of course, grateful, and I also tend to be found with my jaw hanging open when such things happen. I began as an academic writer making literary arguments. After several decades of writing and publishing in academic and creative genres, this recent attention is surprising and also very exciting.
DG: What is next for you? Do you have a new project?
DF: I’m nearly finished with a first draft of a second memoir. That one deals with my adolescence. I was mostly emancipated at fifteen, and it’s about how that came to happen and its effect on my life, and also the estrangement from my parents and siblings, and the reunion of self and family later.
DG: Can’t wait to read that. Thank you for taking the time to speak with me today.
DF: Thank you. It’s been an absolute pleasure.
Diane Gottlieb’s writing appears in SmokeLong Quarterly, Atlas and Alice, Bending Genres, Barrelhouse, The Rumpus, Split Lip, Hippocampus Magazine, Brevity (blog), and 100-Word Story, among other literary journals, as well as in several anthologies. She is the winner of Tiferet‘s 2021 Writing Contest in nonfiction, a finalist in SmokeLong Summer’s 2022 micro competition and is Prose/CNF Editor of Emerge Literary Journal. You can find her at https://dianegottlieb.com and on Twitter @DianeGotAuthor.
My grandma has Lou Gehrig’s disease, she is about 75 years old it was diagnosed 2 years ago. Right now it’s getting more difficult to live for her, because of stiff muscles she can’t even move. Riluzole and Edaravone medicines are given, but won”t give much relief. She can”t eat food without choking. I thought this might be the last stage and the medications she was given did not help at all, so I started to do alot of research on natural treatments, I was introduced to Health Natural Centre and their ALS Herbal Protocol. She started on the ALS/MND Treatment last year, her symptoms gradually diminished including her vocal cord spasm, Body Weakness and Difficulty with swallowing. Reach them at health natural centre . org , She is getting active again since starting this treatment, she is able to walk again ( down the street and back )she have also resumed exercising to strengthen muscles!! God Bless all ALS Caregivers. Stay Strong, take small moments throughout the day to thank yourself, to love your self, and pray to whatever faith, star, spiritual force you believe in and ask for strength. I can personally vouch for these remedy but you would probably need to decide what works best for you.