Death and Loss

Until Further Notice, Celebrate Everything

Danni Michaeli, a psychiatrist by training, is rarely at a loss for words. But they seemed to be escaping him in this moment, after I’d asked him to tell me about his partner, Dave Adox.

“There’s something about him that feels so very hard for me to put into words,” Danni, 51, told me, when we spoke by phone recently. “I’ve always described him as a Muppet,” he laughed. “He’s just a gangly, goofy, funny person. He’s very special. That’s the way I want people to know him.”

***


In June of 2014, Dave began experiencing some weakness in his legs. “He’d had back problems before,” Danni explained, “so we didn’t take it that seriously.” But then the problem began to worsen. Soon, Dave was having difficulty performing physical tasks—even simple things, like opening a container of yogurt. When Dave started experiencing fasciculation—involuntary muscle twitches—all over his body, the couple knew something serious was going on.

“I never imagined ALS is what this was,” Danni said, using the acronym for Amyotrophic Lateral Sclerosis, also known as Lou Gehrig’s disease. “But the doctors knew; before he was even diagnosed, they knew.”

When I asked how Dave’s health was currently, Danni offered the following description: “It’s swallowing him up,” he said simply. It’s a startling statement, but one that is unfortunately apt, for this rare neurodegenerative disease. ALS affects the body’s motor neurons in the brain and spinal cord, which are the nerve cells that control muscle movement. The illness is also known for the remarkable speed with which it can progress, causing increasing disability.

Orion's adoption day

“I always say ALS is a spiritual challenge that is impersonating a physical disease,” Danni said of his perspective on the illness. “When you go through the process, you have to accept increasing levels of dependence. You have to let go of a lot of things you expected of yourself.”

Indeed, today, a year and a half after he first received the diagnosis, Dave’s illness has already progressed to the point where he can only communicate with his eyes. Communication between Dave and the rest of the world has become very difficult. “He has a tablet that is mounted on a stand, and underneath there’s an infrared light that follows and tracks his eye movement, so he can type out on the keyboard, but it’s very difficult. It’s very stressful,” said Danni.

He also now needs around-the-clock care. “We’ve had three hospitalizations in less than a year to the ICU,” Danni said. “Two additional ER visits. And many, many medical appointments.” Danni and Dave have been confronting all of these challenges, moreover, while simultaneously raising their 18-month-old son, Orion.

There is no question that Dave’s ALS diagnosis has upended the family’s lives in profound ways. But, Danni told me, “These last few years have also been a lot of fun; Dave and I were just saying this, actually, that in some ways this has been the best year of our lives.”

It’s an incredible statement coming from someone whose life and family has been irreparably altered by an incurable illness. And it speaks volumes about how Dave and Danni have decided to approach their lives, with ALS now intertwined.

2016: David with Orion

***

Danni and Dave — who have been together for 18 years and married for three — first met at the Pyramid club in the East Village, New York City, in 1998. “They had this night called 1984 that was gay, anything goes,” Danni said. The two hit it off, exchanged numbers, and made a date for the end of the week. As the weekend approached, Danni had yet to hear from Dave, and so he figured he was being stood up. “I thought, fine, he doesn’t want to get together, no big deal. I made other plans.”

Unbeknownst to Danni, though, Dave actually had called, earlier in the week, and left a message with Danni’s roommate, who had neglected to pass the message along. (“Remember,” he said, somewhat wistfully, “this was before cellphones.”) Rather than feel slighted that Danni had scheduled another date, Dave wasn’t fazed in the least. “Okay,” he said simply, “Well, how about tomorrow?”

“I was so impressed with that!” Danni said. “It was so cool that he just rolled with it. That really left an impression on me.” The couple has been together ever since. “I don’t want to make it sound so uncomplicated,” he clarified quickly. “We broke up for awhile, and got back together. But there was always a lot of love along the way.”

2012: Danni and David's wedding bikes

Several years back, Danni and Dave began to pursue the idea of becoming fathers. “It was his idea,” Danni clarified. “But I ran with it.” First, they considered adopting an older child through the foster care system after being presented with that option at the “Wannabe Dads and Moms” group at the Lesbian, Gay, Bisexual & Transgender Community Center in Manhattan. They even made a move to South Orange, New Jersey, in part because they had heard the foster-to-adopt process might be easier there than in New York.

After many years of waiting and pursuing a placement from the foster care system, Danni and Dave were finally presented with the option of adopting a 16-year-old boy, who had a complicated record and had already been in foster care for many years. “I said to Dave, there’s a lot here. Do you want to do this? And he just said, ‘Yes, let’s give it a try!’” Though Danni and Dave have stayed in touch with their foster son off and on since, the placement did not ultimately work out. Still, the experience is indicative of how the couple tends to operate. “We don’t know what’s going to happen,” Danni said, “but why not give it a try?”

Next, they opened their home to four foreign exchange students, over a three-year period, which worked out well for all involved. “We are still very close to them,” Danni said. “They’re like family to us.” Encouraged by the experience, the couple seemed ready for something more permanent. “Okay,” Danni said to Dave. “Let’s try surrogacy.”

Dave and Danni (both in the middle) surrounded by their four exchange students

This route, fortunately, proved to be a fairly straightforward process for the couple. “We transferred two embryos from Dave, since my sperm was too crappy,” he laughed. “And we got pregnant on the first try.” Danni and Dave did, however, have a horrible scare about halfway through the pregnancy, when the couple got word that there might be a problem with the baby. Dave wasted no time, and hopped on the next plane to Texas, where their gestation carrier was living, to investigate.

After meeting with the OB/GYN sonographer, they determined the scare to be, mercifully, a false alarm. “We tested that baby from all different directions,” Danni recalled, still sounding a bit flustered by the experience. “But everything was fine.” So Dave flew back home to New Jersey, and the couple let out a huge sigh of relief.

Their respite from life-changing news, though, was short-lived. The very next day, in June of 2014, when he was just 43 years old, Dave was diagnosed with ALS.

***

Despite the hardships that accompany living with ALS, there is something compelling, bordering on audacious, in how Dave and Danni have chosen to confront the illness. It’s a perspective that can seem to defy, at times, the seriousness of the disease. “We’re both really interested in looking for the miracle inside this,” Danni said, for example. “And we’re trying to maintain our sense of adventure through all of this.”

As difficult as it is to imagine approaching ALS with such optimism, Danni insists that some good has come from the experience. The timing of Dave’s diagnosis, for example, happened to coincide with an incredible, unique cultural moment for ALS. Throughout the summer of 2014, millions of people — everyone from Martha Stewart to U.S. Senator Cory Booker — began pouring buckets of ice water on their heads in support of the very illness with which Dave had just been diagnosed, not a month earlier.

“It was miraculous moment,” Danni said, of the “Ice Bucket Challenge,” which helped fundraise over $100 million for ALS research. “Everyone — the entire world — was talking about ALS suddenly. It was just another piece of the miracle when you think about it.”

Dave used his own “ice bucket challenge” video as a way to come out about his diagnosis to his broader community, which has since come to rally around him and Danni in remarkable ways. “It can sometimes feel like Grand Central Station,” in their home, Danni said, thanks to the dozens of friends, family members, and neighbors who stop by to keep Dave company and help with his care.  “We’re living in this big bubble of love,” Danni said, “and it’s because of this whole thing.”

ALS walk 2015

Some of the support Dave and Danni have received from their broader community has caught them somewhat by surprise. “I can’t even tell you all the ways people have been helping us,” Danni explained, adding that many of these good deeds are done anonymously. “People we’ve never met are dropping food off, taking our garbage out, shoveling our walk. My entire kid’s wardrobe and toys are all things that people left on our front porch. It’s outrageous. It’s amazing. It’s unbelievable.”

Despite the difficulties involved with raising a toddler amid the turmoil caused by ALS, their son, Orion, is another great source of strength for not only the couple, but also those around them. “People respond, I think, to the fact that we have a baby,” Danni said, “I think it makes the whole experience very accessible, and makes people want to be with us.” (It probably didn’t hurt, Danni added with a laugh, that Orion is  “super cute.”)

Danni couldn’t extol the virtues of his South Orange neighbors fast enough (“If you ever want to move to the suburbs,” he told me, “this is definitely the one.”) But he also suspects there is something almost symbiotic about the relationship that he and Dave have formed with his community as a result of Dave’s illness. “ALS triggers something in people. It touches people almost like nothing else. It’s just such a scary disease, you know?”

It was a proactive decision, then, not to insulate themselves from the people who have been touched by Dave’s illness. “We are welcoming people to join us in this experience,” Danni said. “We are trying to live and create from a place of love, and people are very responsive to that. They want it. They get it, and they give back to us.”

AIDS ride 2015

 ***

While the couple’s approach to ALS is remarkable by any standard, Danni was careful not to glorify in any way the experience of living with the illness, or paint an overly rosy picture of the couple’s outlook. “Make no mistake, this is a horrible disease,” he said. “We still get depressed, and sad, and angry, and have any number of other feelings.” The same complexities found in any relationship, he noted, don’t suddenly vanish with an ALS diagnosis. “We still have fights. I get frustrated with him. He gets disappointed with me. We have a lot of those moments, actually.”

ALS, a terminal disease in most cases, also forces those living with it and their families, Danni noted, into difficult conversations. “You have to welcome death much earlier than you’d thought you’d have to,” he said. The mental faculties of people living with ALS, he explained, typically remain sharp, so the choice is theirs as to whether or not to go on life support, or whether or not to come off.

“It’s a really unique thing about ALS,” Danni said. “You often have to choose the time of your death. So we’re trying to figure out how to prepare for and welcome death. It’s in our home all the time now. It’s right there. It’s just right there.”

It’s a decision, Danni stressed, not easily made in advance. “You don’t really know how you’re going to feel,” he said, explaining that for Dave, the worst part about the illness has been not knowing what the next stage of the degenerative progression will be like. “Each time, he’d thought he’d never be able to handle what was about to happen to him, and he has. So you can’t really know how you’re going to feel.”

Despite the advanced stage of his illness, moreover, Dave’s outlook remains resilient. “He always tells me, ‘I know I look far more depressed than I am,’” Danni said, since he is no longer in control of his facial muscles to show expression. “I know he’s frustrated and uncomfortable. I know he’s struggling. But he says he enjoys himself. He told me that just yesterday. He’s doing okay.”

Family 2015

***

“How do I say this in a way that’s meaningful?” Danni asked rhetorically, towards the end of our conversation. “I just wish I could communicate what a funny, silly, and just loveable guy Dave was when he was able to be that person. And how much he still tries, as best as he can, to bring humor into his experience today.”

For instance, last week, it was Dave’s birthday, and he decided to celebrate by throwing a party and asking all of his guests to wear wigs. “Everyone was happy to do it,” Danni said, “And our house was packed to capacity.” As a surprise, Danni hired a musical improve group, and about halfway through the party, each attendee told one of their favorite memories about Dave. “Then these guys performed a whole musical play about him on the spot. It was the most amazing party I've every attended.”

Danni also pointed to a quote that Dave has been using since his diagnosis as a personal mantra. “He found this sign on Facebook that said, “Until further notice, celebrate everything,” Danni explained. Dave promptly posted the note as his cover photo, and ever since, the saying has become something of a rallying cry for their family and community. “Everyone around us using it,” Danni said. “It’s become our brand now.”

“Celebrate everything!” Danni repeated with gusto. And until further notice, that’s what the couple plans to do.

Orion wearing their slogan: "Until further notice, celebrate everything."

Here’s another inspiring story of courage. Click here to read it now.

Feature image photo credit (without text): Abby Kraftowitz 

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