Maybe twenty days past diagnosis, Danielle and I parked for our first support-group meeting. I was glad for the laughs still springing between us. They would keep me brave in the coming years, but I surely needed them now, as custom vans deployed their ramps nearby. I could see where the flaw in my walk was heading.
Within the brick building, Anne and Jennifer took our hands. They represented the ALS Association. I saw kindness in their eyes, along with some surprise and maybe anger. We were young for this club. They gave us nametags and we sat at a ring of tables.
As others joined us, my gaze roamed around until it rested on Danielle, and then on what had made her chin quiver. She watched two men. The one in the wheelchair docked at the table opposite us. His wistful face was fine and quite still, like he came from a painting, but his shoulders heaved steadily. His companion wore heightened expressions. He fussed with their straws and water bottles, making sure that his friend was settled and comfortable. I turned back to Danielle and she shook with silent tears. Whoa! I put my arm around her, feeling awkward and exposed and then ashamed for our self-pity. The woman beside us wrote on her dry erase board, turning the words so we could read them. “You’re one of us now.”
After Anne kicked off the meeting, formal introductions went around. At his turn, the man in the wheelchair—one of several there —spoke in clean blocks between his breaths. “So, my name is Scott, and I have ALS…I was diagnosed about two and a half years ago at HCMC…I’m glad to be back here with all of you and…I’m pumped that it’s spring again.” Retracting his shoulders, he pulled air as he looked to his friend, who mugged reflexively. This guy didn’t seem comfortable, but his voice was sassy. “Hi, I’m Shaun, and I’m Scott’s husband and his caregiver.” His forehead furrowed until the next guest spoke.
After the pleasantries, a nurse talked on this horrific illness. Anne whispered that Danielle and I should feel free to ask dumb questions, but we declined. I didn’t like to speak up among strangers, and my introduction had been harrowing enough. Shaun and I could relate. Besides, I had learned a heap of gritty details through my own research, even before diagnosis. What I didn’t know, and what the nurse probably couldn’t tell me, was how to deal.
At intermission, and before we cleaved into two separate groups, one for the sick and one for friends and caregivers, I rose from my chair. Scott was alone for the moment, and I approached him. “Hi, Scott. It’s really nice to meet you.” I extended my hand, but his own stayed motionless. For a second he seemed like a dick, but then I realized my error! I cupped his knuckles, squeezing softly.
Scott soon became a mentor to me. As disease hushed his body, he turned toward others. He wanted to know how Danielle was holding up, and what progress I was making in the renovation of our home. He asked about our boys and spoke of the bond that he had with his own niece and nephews. Oftentimes, his response to my news was, “That’s really great, Jason.” He meant it.
Slowly, I gathered his backstory. He was born six years ahead of me, and in Farmington, Minnesota. His precise and orderly mind had drawn him into accounting, and he got an MBA and became vice-president of finance at Pearson. He had met Shaun nearly twenty years ago in a dance club. They were actually married twice, the first time with the ocean as a witness, and later back home in Minnesota, for full legality. Scott had loved to run trails around city lakes, until weakness in his thighs brought him to a doctor’s office. It turned out to be catastrophic.
Inside of our stricken group, Scott got heavy. He said, “It really bothers me that my dad comes over to shovel our driveway. I mean, I should be doing that for him.” This went beyond humbled muscles. ALS had snatched away my notion of a rightful life-cycle; of a full and proper human journey. I wouldn’t finish raising my sons. And a decade from now, I wouldn’t be Mac’s man around the house. I would never clean his gutters, adjust a door, watch the game with him, and kiss his silver whiskers, wishing him well until I returned. I still had so much vitality left, and now I have to wither? Sometimes I jerked awake in darkness, and blinking neon spelled: Helpless Early Death. I’d cry so hard I couldn’t breathe. But Scott, he would learn to make peace with unfinished business. He would find that giving and receiving help could fill his days. People poured love over him, and they did it for their own joy. He also didn’t have to worry about leaving things unsaid. “I just appreciate getting to tell people how I feel about them.” I wondered if I, too, would jujitsu-flip the despair stalking me. Would you?
In that other supportive sub-group, Shaun and Danielle grew tight. They shared a sense of humour, and he described how he used silly songs to distract a man who didn’t want things done for him. He advised Danielle to compartmentalize her roles and her feelings, and to stay focused on the task or the moment at hand. Still, he knew what would ultimately come. And when Danielle asked him how he might possibly move on, he sagged. “You don’t understand. We had it all planned out!”
Along with Scott and Shaun, Danielle and I decided to be a part of ALS Advocacy Day in Washington, D.C., in May of 2016. I was now a full year past diagnosis. The night before we’d meet with politicians, the four of us went to dinner at The Occidental. The food was elegant and our conversation light, and I realized that we’d never socialized outside of the support groups. I watched as Shaun broke from his own meal to give fork-fulls to Scott. I noticed how Scott’s shoulders pumped urgently, and how Shaun placed a bi-pap mask over his husband’s face so he could catch his breath. At the end of the meal, the server took our picture. It captured us happy and hopeful, and we looked like good friends.
The next morning, I was thrilled to point my scooter up Capitol Hill. We went with a third young couple, Clay and Jana, who faced ALS and wanted a piece of this moment. The same went for two sisters who’d lost a parent and a grandparent to the disease. Apart from our little unit, people from every state in the union were converging to ask for specific and coordinated legislation.
Our first two meetings with U.S. Representatives went well, but we thought that the next one might have a different feel. Rep. Tom Emmer had recently replaced Michelle Bachman, a tea-party warrior who’d retired after four terms. Emmer came across as a feisty foe of taxes, spending, and regulations, and I wondered if he’d agree that our cause merited the governmental actions we proposed. Scott and Shaun even worried that their presence could hurt us with him. You see, Rep. Emmer had worked to advance a constitutional amendment in Minnesota, one that would have recognized marriage solely as a union between one man and one woman. Voters rejected it, but his convictions were clear. Then, as legislators prepared to address school bullying based on sexual orientation, Mr. Emmer pushed back. He held that teachers didn’t intervene at times because they feared lawsuits. “I don’t think we need more laws,” he said. “I think we need more understanding.”
We wouldn’t get to help Tom Emmer understand the impact of ALS, at least not in person. Out in a humid hallway, we met instead with a blonde, crew-cut young man, who listened stoically as we described our condition and how our legislative “asks” mattered. Scott stayed practical, demonstrating some key features on his wheelchair, and noting that many insurance plans, including Medicare, didn’t cover the costs. Would Rep. Emmer be willing to work to change that? Then, I made an emotional appeal. I spoke of how our family had struggled through the recession, how Danielle and I had been self-employed by necessity, and of how my real nightmare had arrived as we’d started to thrive again. I leaned in closer to the crew-cut and lowered my voice. I described how physical debilitation had cut me off from carpentry and from my income stream, and how emasculating that had been. Given the iron prognosis, could Rep. Emmer speed the delivery of social security disability income to those newly sidelined with ALS? “Thank you for sharing your story,” said the young man. He was inscrutable.
It was time to leave the ageing maze of House offices. Now, we sought the Senate’s corridors. Rep. Emmer’s most junior aide, an intern right out of college, volunteered to escort us. We moved through a subterranean world, past checkpoints and metal detectors, brushing by well-dressed men and women in a hurry. We came to the platform for a light subway train. In the bumping confusion of wheelchairs and scooters, couples became separated. It would be me, Shaun, and the intern in a tiny train car. Shaun wedged himself against a window, unable to conceal his discomfort with the breezy young man. I sat across from them in my scooter. The kid was oblivious to the tension. Hell, he was tickled to be right in the thick of the nation’s capital, working for his favorite congressman. It was unbelievable, really. We talked about his high school wrestling experience and his college friends. I couldn’t detect anything dark in him, and I turned my charm wide open, hoping to leave him with a glow to take back to his boss. But Shaun was all, “Ew!! Ew!! Ew!!” , his face stretched between loathing and pride. Here was this eager kid, serving a man who said that Shaun’s love for Scott was lesser stuff. I worked to keep the young fellow engaged, but I caught the grimaces, the oh-please grins, the you’re-full-of-it eyes, and the ridges of Shaun’s forehead. I thought I smelled latex, and then synthetic polymers, as his features grew ever more expressive.
We got out of there just in time, thanking the intern and waving goodbye with smiles all around. Just ahead of us, gleaming elevators would lift us into the Russell Senate Offices. I sensed that Scott was tiring, from the way that he heaved and from his pale and somber face. Shaun was having none of it. He strapped on that bi-pap mask double quick, and bent over his husband to tell him how it was going to be. This was serious stuff.
We got to meet with both of Minnesota’s senators, Amy Klobuchar and Al Franken. I was pretty awed when they entered the conference rooms. My voice was slurred with emotion and fatigue, but I told them how I had been in a cutting-edge clinical trial, and how I would love the chance to do more, as a test pilot if nothing else. Couldn’t they pump up funding and ease some of the onerous FDA safeguards, even a little bit? Other advocates reminded them of the Dormant Therapies Act, a stalled effort to allow patented but mothballed potential treatments to be taken up and explored by others. Then, Scott talked about his deep desire for action on behalf of those not yet diagnosed. He said that he knew it was too late for him, and alluded to his losses and his sorrow at leaving his best friend. He was matter-of-fact, just like in the support groups. Behind him, Shaun struggled to keep his composure. The senators were moved, especially Sen. Franken. After our talk and some group photos, he and Scott shared a private word, and Scott was beaming.
Back at our hotel, there was a celebratory air. People in wheelchairs were everywhere: in the lobby, on the sidewalks, going out to dinner or drinks. Danielle and I met up with two of my sister’s friends, Libby and Jenni, who happened to be trained in neuroscience and who worked for, or alongside, the federal government. They knew how research funds were allocated, and about certain politicians’ attitudes toward science in general.
I let all of that go, as Danielle and I met Shaun in the hotel bar. With him were Renee and Abby, from Fargo, ND. Renee was close to our own age, and her daughter, herself just entering adulthood, was caring for her as she dealt with ALS. Shaun had put an exhausted Scott to bed and now, free of his caregiver responsibility, he seemed younger and far less reserved. He was loose, even silly. He didn’t hesitate to give me shit if I started to do something unwise, given my condition, but also if I complained about my limits. “Oh, you’ll live,” he assured me. Someone hatched the idea of Pocket Shaun. It would be an app for smart phones, to scold or motivate impaired individuals. There would be maybe a dozen stock phrases, voiced by Shaun at peak sassiness, from which a user could choose. Shaun loved it. “Oh my God, like this total queen standing over you!” We got increasingly goofy as the drinks flowed. One of us even ended up on the floor, and the real-life Shaun was there to make a scene.
That trip to DC was a blast, and what’s more, our voices were heard! In late 2016, congress passed the 21st Century Cures Act. Every member of Minnesota’s delegation supported it, and the President signed it into law. Also, as I write this, a bipartisan bill has been introduced in the Senate that would enable PALS to get disability benefits as soon as they have to stop working.
Admittedly, I follow the news out of Washington more closely than most. Since I was a boy, I’ve loved American history and politics and current events. I geek out. If it’s possible, our advocacy increased my obsession. The 2016 presidential campaign was a rich intellectual feast for me. But many people felt shaken and dismayed when the votes were counted. Scott, Shaun, Danielle, and I were among them.
I’m going to speak for myself now, but I think we’d all sensed a vindictive spirit in the land. It’s something timeless, and doesn’t belong to one political party. I believe it’s born out of frustration and slighted pride, but as this election grew super-heated, it all coalesced and spun around an eye that beheld itself. This cyclonic image of strength would stir millions. Few things are more thrilling to anticipate and witness than a storm, and as a carpenter, I enjoyed smashing things; gutting them to the studs. But then what? Rebuilding, adapting, and nurturing take a far more steady and sophisticated power. They demand a deeper commitment. We can’t simply vent. In the support groups and in the capital, Scott and Shaun were the ones telling it like it is. They were the ones showing true strength, by saying that we’re all weak at some point and in some way. That it’s okay to accept help. That there’s an honor and a wholeness in providing it—even, and maybe especially—to perfect strangers.
Scott’s health was stable for a long time, and we got lulled into thinking he had something figured out, or some agreement with disease. We went over to their place a few times and met Remy, their beloved little dog, and we watched movies and drank some cosmopolitans. They missed several support-group meetings and we worried. Apparently, Scott was having some breathing issues related to mucus. We saw them at ALSA’s fundraising gala. Scott had his mask on much of the time, his voice tiny behind it. Renee and Abby were there, too, and we all got our picture taken together. I had no way of knowing that I wouldn’t see Scott fully conscious again.
All PALS have a big decision to make: whether or not to get a tracheaotomy, and to go on a ventilator when the diaphragm loses all strength. If you get vented, your life can go on indefinitely. But, someone must be with you at all times, and that can get expensive. You’re also hooked to a machine every second of the day. By that point, many people are tired of it all. They may be depressed or fed-up with all of the little humiliations. Life might not seem compelling anymore. In that case, the person chooses euthanasia. It’s quite peaceful.
Scott knew that he had to decide. It was getting to that point, and it sucked. Events would force things. He spent time in a hospital, but pulled through. Then, Shaun called an ambulance one night as Scott struggled mightily to breathe. He suffered two heart attacks during the trip. In the ER, he got a trach and went on a ventilator. He seemed to be doing well. But a day later, something was wrong. Somehow, there was bleeding inside of his brain, and the damage was swift and irreversible.
Shaun put the word out on social media. On a January day both overcast and frigid, with an air temperature of zero degrees, Danielle and I drove to the hospital. I piloted my scooter into the intensive care unit, right up to Scott’s bedside. He seemed to be sleeping easily, but we knew that he was gone. Shaun joined us. I told him, my voice delaminating, “Scott’s my best ALS buddy.” He looked me in the face. “I’m so sorry, Jason. I tried to keep him alive!”
I know you did, Shaun. I know.