Deirdre Fagan talks about her husband’s ALS and how they never lost the urge to love, laugh, and live.
The Last Time Making Love
He is still — unable to move.
The work you used to do together
now yours alone to do for you both.
The laundry, the cooking, the shuttling
of the children to and fro, the furniture
rearranged, and now your husband
lifted by you and moved
where we now must go.
You look into each other’s eyes
knowing there is little time for such
things in these last bare hours; there is barely
enough air to pass through him to achieve
the goal — what you could early on spend
a weekend enjoying, you had to later
achieve in quick fixes before the young steps
on the stairs or the sudden tap at the door
But here, now, you grip the bar that
helps him move and climb his body
knowing every smooth and bristled surface,
you repeat in your mind not to
ever forget his warmth, his scent,
or the crevice in the center of his chest
where you found your home.
Do not avert your eyes —
know that this has to be forever.
The leverage of the bar becomes
part of both of you as you, willing to do
everything for the man you love
will these punctuated moments:
be beautiful, be perfect, be the lasting
few minutes to an end that makes
you both whole. In the temporary joy
that comes, you both experience a release,
a pleasure knowing that this time, at least,
time did not matter and
the parting was satisfactory.
Spent, you lie on his chest,
beads of sweat joining in the crevice,
and you both rest in the last after love
made with the assistance of a hospital bed
equipped with railings and a bar for leverage.
It is the final respite between hospice visits.
After, the children will enter this doorless
dining room and return you to the movements
that will remind you your eyes are no longer
able to gaze at the same horizon.
“So, what do you think, Doc?” Bob asked.
“I think you probably have ALS*.”
Bob laughed. “Thanks for saying it.”
Thankfully: a straight shooter.
“We thought so,” I said. “Well, actually Bob thought so. He diagnosed himself before anyone else would commit. Thanks for saying what you think instead of trying to protect us from the truth. We can take it. That’s why we are here, because we want to know. We don’t want to pretend. We want to get on with what we can get on with.”
The doc nodded, leaning back farther in his chair with his legs hooked at the ankles and his hands folded behind his head. Bob sat there looking at him and nodding along with what I was saying.
The doc leaned forward and addressed only Bob, looking him squarely in the eyes.
“So, this is what I think you should do. Some people will leave here after I tell them this, and they’ll go home and shut the doors and turn out the lights and wait to die. . . . Don’t do that. That’s not what you should do. You need to take this news, know it’s there, and then put it away, and go on with your life. You clearly both love each other very much,” the doc said, glancing at me, and then back at Bob, and then back at me. “Enjoy the time you have together, and enjoy your life as much as you can. If there is something you’ve always wanted to do, do it. Don’t wait. This isn’t a disease where you can wait. If you want to do something, go do it. Do it now. Live your life.”
“Get busy living instead of getting busy dying?” Bob asked playfully, knowingly.
“Yes. Now, I’m not going to take up any more of your time. Go on, get out of here; enjoy your life.” He shook Bob’s hand and then rose to leave: “We do have someone from the MDA who would like to share some information with you before you go, though.”
I can’t remember whether it were first with the MDA in Chicago or first with the MDA rep in St. Louis that we learned that the Muscular Dystrophy Association was the umbrella organization for ALS, but we did, and we were also given a packet to take home with a handbook and a video. The video taught me about a website I could use to set up various help as time went on, but also to communicate with folks via one bulk email or a blog post about what was going on with Bob and his illness because communication, while at first sort of cathartic and emotionally helpful in terms of repetition and release, can become exhausting as people continue to ask how the person is, and you find yourself having to repeat over and over the same information.
After leaving the doc, we spent the night at a hotel just outside of Chicago. The hotel gave us a huge suite where we would have enjoyed staying with the kids because there was a separate bed and living area, but we were kid-less, so it felt like one of those dates we would have had at our local hotel where we would have checked in and had our own little party. While our spirits weren’t up to it, we went to an Italian restaurant around the corner and enjoyed a nice meal and wine. For now, we were at least able to savor the food as we always had, before Bob would inevitably have difficulty with chewing and swallowing as all of his voluntary muscles deteriorated.
We tried to have a good time. We were morose, but we picked up another bottle of wine, a zinfandel, and we sat together in the hotel room drinking out of plastic cups. We weren’t much in the mood, so we didn’t make love, even though we had a huge room to ourselves. (By morning, we would decide we needed to seize the opportunity.)
Bob’s arm was still twitching like crazy when we went to bed that night; it wouldn’t stop for the rest of his life. Those twitches were his body’s way of signaling something was wrong, like a fire alarm. These fasciculations, as they are called in medical terminology, are often one of the first symptoms of ALS, and they were in Bob. They indicate the signal from the nerves to the muscles is becoming more disrupted. The twitches were to me a sort of Morse code.
I snuggled up to Bob, wanting to feel the twitches, wanting somehow to be in this with him, or even to transfer the illness to myself. I very much wanted to be the one to die, and told Bob so, regularly. I would rest my head on his hairy chest and say, “Why can’t it be me? I want it to be me. I can’t do this.” I couldn’t imagine how I could ever go on without Bob by my side. He was the love of my life and my reward for all of my other disappointments and losses. He was the reason I was still alive. He became the reason I had left earlier relationships. Why couldn’t he be the one to stick around and go on? I was too tired already.
Even though we hadn’t usually been snugglers at bedtime, I put my head on his arm that night and felt the twitch and tried to communicate through those rhythms. “I love you. Please let me die instead. I am here. I am here. I am here. I love you.” I said inside my head to the rhythm of the twitches.
We went home, and I decided I better start taking a look at the reading materials the MDA had given us. I got up one morning and sat in my Valentine’s Day hearts-covered pajama bottoms and poured a cup of coffee into my sock monkey mug. That mug brought whimsy when I needed it most. I was dressing for happiness even though I was anything but.
I sat down at the oak kitchen table with all of the scratches and dings of our writing circle, friends, family, and the kids in it, and started to turn the MDA handbook’s pages. The spiral-bound book was titled the MDA/ALS Caregiver’s Guide** and was published by the ALS Division of the MDA. It had chapters on everything that it pained me to know, but everything I needed to learn if I was going to be all of the things I had promised Bob I would be as we went through this together. It had sections titled: The ALS Caregiver, Daily Care, Respiratory Issues, Communication Issues, Nutrition Issues, Emotions, Financial, Legal, and Medical Issues, Finding Caregiving Help, and End-of-Life Issues, in that order. I was now an ALS Caregiver, and I needed to learn all I could learn. I sat at the table, alone, reading. Bob came in, got himself some Mountain Dew, having never drunk coffee or tea, saw what I was doing, and wandered off.
I turned the pages, reading and skimming, learning what was in the book and getting the gist of everything that was going to happen leading up to “End-of-Life.” It was all so difficult to comprehend and imagine. Bob was still walking around fine and speaking clearly. Other than the twitching, nothing much else had really happened yet. I noticed he was a little weaker, a little less stable, but life was pretty much as it had been. It was hard to imagine him ever becoming so dependent on me. He had always been the “heavy lifter” of the relationship; I did the fine-tuning, but he lifted heavy things. When we were first dating, Bob had sent me an adorable email where he wrote: “Cave Bob love Cave Dee wants to have Cave Kids with Cave Dee, Grunt.” When people called, I was referred to as “the Brains of the Operation” and he called himself the one who lifted heavy things. “Grunt.” According to this guide, I was soon going to have to be the brains and the brawn.
I read about drooling and choking and lifts and pressure sores and anger and depression and voice banking. . . . It went on and on, for over 200 pages. I sat sipping my coffee and flipping the brightly colored pages with color photographs, my heart sinking in my chest with each turn of the page. This is what I was doing first thing in the morning. This is what we read now. This is what life was.
Then I found the section titled “Marriage.” Under this heading there were two sub-topics: “Changing Roles” and “Intimacy and Sex.” Clearly the MDA wasn’t encouraging patients to have sex and intimacy outside of marriage, since it was a subheading. This struck me as an odd effort. An actual section titled “Marriage.” Strange. In any case, I began reading.
Bob and I had always been intensely attracted to each other and rather proud that we had defied the rule of “no sex on a first date” if a relationship is going to last. We had not only had sex on our first date, but we’d had it multiple times. Our sex life had always been a point of pride for both of us because we could be screwing the hell out of each other one minute and talking philosophy and poetry the next. Many of our early emails to each other are filled with flirtations and comments on each other’s bodies and how eager we were not only to be together again but to be intimate again.
The section on Intimacy begins innocently enough, describing how sexuality will inevitably change as the disease progresses:
Caregiving can provide for a special kind of intimacy. Intimacy isn’t only sex — although ALS doesn’t end sexuality.
Times of closeness and romance can come during special meals, dates or anniversary celebrations, or simply from talking, touching, laughing, hugging or sleeping together. A couple can enjoy the moonlight, favorite music, or affectionate kissing. One woman found that feeding her husband was a comforting and cozy time for her. Reading to him, while holding hands, also became intimate and precious.
It was sad to imagine us being limited only to touching, but it was also encouraging that we would find other ways to be intimate. I kept reading with a combination of curiosity and appreciation that the guide was addressing such issues. It was refreshing that the MDA was informing readers since, for many in American society, sex is so taboo we are left in the dark not knowing what is coming. No one, for example, ever talks about elderly sex. Sure, there are Viagra commercials and some subtle comments about dryness for women in some advertising, but until we age, ourselves, we are kept in the dark because no one really informs us what sex as an older person is going to be like, or if we are even going to have it. We don’t talk about sex with disabilities, either.
The last page of this section begins, “Some spouses find it difficult to maintain a sexual relationship because they see the partner in a clinical way or are too exhausted,” but within a few paragraphs the mood changes entirely. It’s a short section — only three pages altogether. For a book with so much detail, readers are given very little on this topic, but what they are given is very important. The section continues:
A person with ALS needs to give his or her spouse affection and time to be intimate. If a caregiver provides chores all day, and then is expected to “perform” sexually, it becomes another task, not lovemaking. Both partners can make romantic gestures through words or planning a time for intimacy.
Catheters, vents and immobility make it necessary to adjust sexual positions and actions, but offer a great opportunity for imagination.
This section made a lot of sense to me, but the word “imagination” in the last line struck me as odd and leading. I was thinking, “Way to go MDA! Nice job encouraging sex and intimacy!” but none of the language or tone before the word imagination prepared me for what came next:
One couple took advantage of the times the partner with ALS fell on the floor and was uninjured, and another man says, “Thank God for sturdy ceiling lifts.”
I had just taken a swig of coffee and thought I might have to run to the kitchen sink and spit it out of my mouth. I struggled hard to swallow, and a great release came as I banged my hand on the table several times and then pushed back so I could double over laughing while I imagined a contraption dangling from our ceiling like a swing in a sex club. Bob came in from the living room to see what was going on as no one had laughed in the house like this since before the first twitches. There had been no room for laughter. This was not a laughing affair, or was it?
“What’s going on?”
I pointed at the page, trying to catch my breath, “Look,” I gasped, “Read this.” I kept laughing while I awaited his response.
Bob read the section aloud and then smiled, raised his eyebrows, and began swinging his hips and his arms in a gripping and grinding kind of way as he made porn music sounds with his mouth: “Hey, Dee, Buck a bow bow, buck a bow bow.” He chuckled. Then he winked at me and nodded his head up and down like “Yeah, Baby.”
“Honey,” I declared, “I can’t wait until you fall on the floor!”
The caregiving guide had just poked a giant hole in the tension that had been building in our house since we had received the news. All the gnashing of teeth and clenching of our hearts and maudlin crying to love songs — it wasn’t going to end, but we felt a great release when we were able to stand back and see the absurdity of the entire situation through the guide writer’s choice to include these memorable quotes. We were facing a miserable fucking situation, but dammit, we had a choice about how we were going to handle it, and since when had Bob and I ever gone home, turned out the lights, and shut ourselves in a room as a way to deal with reality? Sure, we’d done plenty of yelling and pounding our fists as we faced obstacles like Bob’s vasectomy reversals so we could have kids, and not being able to conceive at first, or the job or money struggles, or the losses of my dad and brother, but we’d always kept fighting the fight and laughing. We’d always kept laughing. Now was no time to stop.
Bob and I never did buy a sturdy ceiling lift, or do it on the floor (after he had ALS, anyway), but it turned out it wasn’t the specific advice we needed from the MDA, so much as the spirit of the intimacy section. We needed to be reminded we could and should laugh, and we needed to know lovemaking was going to be possible. We needed hope and relief.
“Hey Bob,” I continued to inquire throughout his illness, “want to fall on the floor?”
While I don’t remember all of the times in between, I do remember the first time and the last time Bob and I made love in our 12-year relationship — 11-year marriage — before his ruthless diagnosis and death 10 months later at the age of 44. The first time was filled with all the hope of what we would become as a couple, and the last with all of the gratitude of what we did. The first time was on a single futon in a studio apartment in New York, and the last in a hospital bed in our three-bedroom Queen Anne in Illinois while our son and daughter were at school.
The last time Bob and I made love, the hospital bed bar sure came in handy for “leverage,” as one website advertising such a bar points out, and for “getting up.” While I’m sure in this instance of advertising, it is specific, physical advice being given, I am so glad Bob and I also went with the spirit of it. After all, the bar is also called a trapeze.
This excerpt is part of a completed memoir seeking publication.
“The Last Time Making Love” was first published in Bonnie’s Crew.
*Amyotrophic Lateral Sclerosis, also known as Lou Gehrig’s disease, a neurodegenerative disease with no cure.
**MDA/ALS Caregiver’s Guide. Muscular Dystrophy Association. 2008.