In 2012, I lost my husband of 11 years, Bob, to amyotrophic lateral sclerosis (ALS), also known as Lou Gehrig’s disease. ALS is a progressive disease that affects the ability of the brain to control the muscles, usually causing death when the sufferers can no longer control the muscles that allow them to breathe.
Bob was one of the most selfless people I had ever met, and that didn’t change when he was diagnosed with ALS in 2011 and given the standard two-to-five-year life expectancy.
Having been referred by our small-town neurologist, we drove to the nearest large city to see another specialist three weeks after Bob’s first symptom: a twitch in his arm. The day after Bob’s diagnosis, we checked out of our hotel to begin the two-hour drive back home. Our children were in the back of our minivan in their car and booster seats, and he was driving. As Bob turned the wheel toward the hotel exit, he said, “I want you to love again.”
Bob and I had children ages 3 and 8 when he was diagnosed. When Bob was gone, he not only wanted me to love again, but he wanted them to have someone else in their lives who would love and help raise them.
Still, when Bob said that, I wanted to open the door and hurl myself out. My heart was aching with the reality of Bob’s not even 24-hour-old diagnosis.
We were at that time in our early 40s, but I had outlived the last of my birth family members by the time I was 36. My mother had died at 51, my father at 68, both of my brothers by 40.
When Bob was first diagnosed, I wanted to die. I couldn’t outlive my entire birth family and my husband, too. I couldn’t go on alone as a single mother without my family members, or a partner or really anyone at all who could regularly be there for me and the kids. I just couldn’t. But Bob said I could and would.
During the first month of Bob’s diagnosis, we struggled to wrap our heads around what was coming, how we could best manage our teaching jobs and raising the kids, and what we could do to prepare for this now simultaneously known and unknown future. We talked about the idea of me falling in love again just as we had talked openly about everything else throughout our relationship.
One day I plopped down in the chair next to Bob and said, “Seriously, who am I going to meet in this small town? We always said we were lucky we moved here as a couple because neither of us would have ever found anyone here. I am going to have to go to academic conferences or something,” I joked.
“You never know … ,” Bob answered, “you just might, and conferences aren’t a bad idea.”
A close friend of mine was widowed the summer before Bob was diagnosed and had fallen in love again. While she giddily told me about her new relationship with an old friend over martinis and sushi one night the fall before Bob was diagnosed, I had wondered who in my past I would consider resuming a relationship with if I ever lost Bob.
“What about Michael?” I asked Bob one day.
Michael was my brother’s friend who I had had a brief relationship with shortly before Bob and I fell madly and passionately in love. Michael had ended that affair; he hadn’t wanted a commitment with me or anyone else. He remained single, childless and a good friend after my brother died.
It might sound strange to some, but in the midst of our devastation and pain, it helped me to imagine a future and also helped Bob to imagine me and the kids thriving without him.
“Why don’t you write him?” Bob said.
“Yeah, no sense wasting any time if he’s not interested. You deserve the best, Dee.”
After dinner one night, Michael popped up online. “He’s online,” I shouted from the kitchen. “Go for it,” Bob said.
I began typing: “Michael, you’ve really been here for me these past months …” I finished and stared at the blinking cursor.
Michael began, “I think we are good like this, Dee.” I was deflated.
“He says no,” I shouted to Bob.
“I’m so sorry, Dee.” This amazing selfless man of mine was consoling me because I had been rejected by another man.
“We are so weird,” I told Bob later that night as I readied him for bed.
“We are awesome. This is how it should be. Look, if I weren’t sick, none of this would be happening,” Bob said.
Bob and I had always talked openly and honestly about every feeling we had ever had, and during his illness it was no different.
Bob and I had also always been honest with our children. From the very beginning of his diagnosis, we explained that Daddy was sick and he was not going to get better. There were no treatments. There was no cure. This was a progressive illness.
Day to day, week to week, there were noticeable changes in Bob. He had always been the sous chef while I cooked, and he had always done the dishes while I put away the leftovers. Within weeks, Bob couldn’t grip the sponge or hold the dishes firmly enough to wash. Then he had trouble folding laundry because the muscles between his thumb and forefinger had weakened. Then he had trouble walking very far, so we ordered an accessible parking tag. Within three months, he was no longer able to pace while lecturing in his philosophy classes. Bob told me he stood still at the front hoping he would not lose his balance and fall.
As things changed, I quickly picked up the slack. I was now the only one who could pick the kids up and carry them up the 16 steps to bed when they fell asleep in the living room. I was the one who had to do the heavy lifting. At first I only had to take care of the house, the kids and our dog. Soon I would have to take care of Bob, too, and so would the kids.
After about a month of weeping and mourning, Bob and I looked at each other and discussed whether this was how we were going to play the hand we had been dealt. Did we want to spend the rest of Bob’s life mourning him while he was still sitting right here, or did we want to get busy living?
So we opened our doors, and over the 10 months of Bob’s illness, we welcomed over a dozen sets of visitors from around the country. We were determined to have one long party. There was Champagne, there was food. Bob loved food, and as long as he could chew well, he was going to eat as much of it as he could.
When school let out for both of us in May of 2012, we had more time for conversations and visitors. Michael would be coming with two of my brother’s other friends in June, and other visitors were coming every week. We also had local friends dropping by regularly.
One of my colleagues, Dave, began to stop by every few weeks. When Dave first began coming, the talk among the three of us was casual, but as summer went on and his visits became more frequent, we all began to share the more intimate details of our lives. Dave slowly became one of our closest friends during the most difficult of times.
In early June, Bob stopped being able to take the stairs to our master bedroom, and our dining room became his bedroom. By August, I wondered how I would return to work while caring for him. By late August, Bob was enrolled in hospice. The end was nearing faster and faster. I could barely keep up emotionally or physically. It was now very clear to both of us there was going to be an “after Bob.”
Bob and I continued to talk openly about everything from thoughts about my future life to decisions about how to help the children to discussing the details of his death. We also laughed a lot. We had always managed loss with humor, and that did not change with Bob’s diagnosis.
We had also always been passionate and deeply attracted to each other, and that also did not change. We continued to express our love emotionally and physically as he progressed, both of us finding ways to adapt our intimacy to his body’s changing abilities.
By September, Dave was stopping by a few times a week. We were seeing him more than anyone, so he became the friend who was next on our call list if hospice couldn’t reach me. One day, after Dave had dropped by for a visit, Bob said to me, “You two can really talk … you should pay attention to that,” and then he winked at me.
“Are you saying I should hit on Dave?” I joked, knowing what he was implying.
“We both know marriage is a long conversation,” Bob said, quoting Nietzsche, as we both often had to each other.
When Bob died in October of 2012, the kids, Dave, by our son’s request, and I were by his side. Dave had by then made our house more accessible, regularly brought us dinner, fixed our son’s bike and even let our daughter draw faces on his knees. At the time, Dave knew nothing of the conversations Bob and I had had about him.
But one day on my porch, shortly after Bob died, just as I was close to sharing what Bob had had to say about him, about us, Dave began, “I want to tell you how much I have grown to respect you and Bob these many months … and I’m wondering … ”
“It’s funny you should say that … ,” I began. I continued on to share how Bob and I had joked and how I had also grown to respect Dave for his kindness and generosity.
I was, of course, still grieving Bob. But I had been grieving Bob since his diagnosis. Both Bob and I had had many months to say goodbye physically and emotionally. By the time Bob died, I knew it was time for him to no longer suffer, and he was ready to go. Bob had prepared me for his departure, and while I could never be fully prepared, I was as prepared as I was going to be.
I did not have the time, energy or interest in developing a relationship with Dave while Bob was alive, but from when Dave said he had developed admiration for me, I was able to admit to myself that the feeling was mutual.
Bob’s mom took the first picture of Dave and me on Dave’s back porch, when she visited for the first time a few weeks after Bob died.
While the transition to dating Dave felt natural, it was not unencumbered. I was simultaneously grieving and helping our children to grieve, managing death details like Bob’s cremation and the righting of our dining room to a playroom for the kids.
I will grieve Bob for the rest of my life. Dave has never been in competition with Bob, nor was Bob with him. Bob, Dave and I were all on the same page, and our children welcomed Dave as naturally as Dave and I welcomed each other, and it’s really only the five of us whose opinions matter.
In Bob’s words in a note he wrote for our kids to read when they were older:
I’m guessing there will be much discussion (by others, and perhaps by you two) concerning your mother, who she finds to be with after I’m gone, and how long it will take her to find someone. Most, if not all, of this discussion will be a bunch of BS, completely assumptive, and a waste of time. For the record, your mother and I got together relatively quickly ― because we knew we were right for each other.
Just think about it for a second. How long should your mother “wait” before she finds someone else? Many people have an answer to that question. But how would anyone know that amount of time is the standard to use in this particular situation? Most people have no idea how to answer that question. There is no algorithm for something like that, and nobody should ever presume to have one.(Even if they say it with conviction, they’re still delusional.) None of this is happening to them, and none of it is about them — and, further, they have no idea what life was like prior to my dying. They always go by the date of death, as if that’s some acceptable starting point. But you and your mother will be losing me long before my actual date of death, so it makes no sense to do that. So, if people have opinions on “how long your mother should wait” before the next guy, tell them to shut up, because it’s none of their business.
Dave and I celebrated our seventh wedding anniversary this past March. But Bob’s memory is very much alive. We have rituals for celebrating Bob’s life with the children on Bob’s death anniversary and his birthday. We walk in Bob’s memory as “Bob’s Muscle Team” every year in our local ALS Walk for other families facing this.
To this day, my heart beats for them both.
Deirdre Fagan is an author and associate professor and coordinator of creative writing at Ferris State University. Her memoir, Find a Place for Me: Embracing Love and Life in the Face of Death, will be published on Nov. 1. For more information, visit www.deirdrefagan.com.