Estimated read time: 15-16 minutes
ALPINE — With some effort, Spencer Brown unfolded his 6-foot-7-inch frame from his wheelchair to prepare for a task most people do without a thought.
A picture of concentration draped in a violet robe with a black mortarboard perched on his head, he steadied himself while his wife, Ellis, worked his forearm crutch onto his clenched left hand and took him by the right. Applause and cheers built as he haltingly put one foot in front of the other across the stage in the Barclays Center in Brooklyn. A smile came across his face and a beaming Ellis wiped a tear from her cheek.
New York University's Tandon School of Engineering faculty stood and clapped as he paused for a photo with Dean Jelena Kovacevic.
Earning a master's degree takes a lot of hard work, but it's safe to say few have worked harder this past year than Spencer Brown. The fact that he walked — literally walked — with his fellow graduates this past Monday is nothing short of stunning. He couldn't move at all nearly 10 months ago.
Spencer finished his coursework in cybersecurity last year, but because of the COVID-19 pandemic, NYU didn't hold an in-person graduation in 2020 or 2021. To celebrate his accomplishment last summer, Ellis decided to throw him a party at her parents home in Alpine.
July 29, 2021, started as a festive occasion around Jason and Julie Chaffetz's backyard pool. About 50 people from the Brown and Chaffetz families gathered for cake and ice cream, and swimming.
Adding to the joyful mood, Ellis had just told her family that she was expecting the couple's third child.
Everyone took turns jumping off the diving board. When Spencer, 30, got to the end of the board, he put his arms to the sides of his long body. He'd done a "penguin" dive hundreds of times. This time, though, he bounced headfirst into the 10-foot-deep water, a torpedo smashing to the bottom, head slamming the concrete where it begins to slope toward the shallow end. His neck and spine absorbed the sudden impact. He could neither feel nor move.
He held his breath and prayed someone would see him. He worried that because of his reputation as a jokester, they would think he was just messing around.
"I do remember thinking, 'OK, like this could be the end,'" he said. "This is how I say goodbye to the world, so hold on tight."
Jason Chaffetz was first to spot Spencer on the bottom and started yelling his name. Ellis, all of 5-foot-4, jumped in to drag her husband to the surface. She thought they both might drown. Others jumped in and pulled Spencer to the top. They kept him in the water until paramedics arrived.
The Chaffetzes removed the diving board the next day.
In a life-goes-on moment, Chaffetz, the former Utah congressman and now Fox News contributor, had to guest host "The Sean Hannity Show" from his basement the evening of the accident.
Ellis has documented her family's journey on Instagram starting that first night in the hospital, posting every sad, sweet, exultant, heartbreaking moment since.
A prolific journal writer, she shunned social media and preferred to keep her thoughts on paper. But she said she now sees it as a blessing to be able to reach out to many loved ones at once. Her posts give a glimpse into the emotional ups and downs, the setbacks and the breakthroughs, the bad days and the good as the Browns adapt to an unexpected life.
Ellis, 26, spent the first six months of Spencer's recovery pregnant with their third daughter, who was born in February.
"This is hard being pregnant and caring for him as much as I do but I would way rather have it be this way than to have planned his funeral and had to have his baby by myself," Ellis said a week before baby Guinevere arrived.
In a photo taken just before the accident, Ellis, a hand over her pregnant abdomen, leans her head on Spencer's shoulder, who is wearing a graduation cap and a gown over a dress shirt and swim trunks. The family is standing behind a homemade purple and white NYU sign. He is holding his daughter Aurora in his arms, while Isla stands next to her mother.
Spencer didn't actually break his neck, but essentially bruised his spinal cord. Dr. Don Van Boerum, who treated Spencer his first week in the intensive care unit at Intermountain Medical Center, said it's a misconception the spinal cord has to be cut to result in paralysis. He likened the spinal cord to a bundle of delicate wires that connect to the brain and all the way down to the extremities.
"When there's an injury in the neck, then everything that goes through that area is disrupted," he said.
Spencer's injury resulted in incomplete quadriplegia. He has some sensation and movement below his neck. He can't tell if he's hungry. Some things, like a french fry, feel too hot to touch.
He has what's called central cord syndrome, said Dr. Kevin Park, who treated him at the University of Utah Health's Craig H. Neilsen Rehabilitation Hospital. It typically leaves the hands and arms weaker than the legs, which he said is true in Spencer's case. It also comes with spasticity or involuntary muscle movement, another symptom he experiences.
Park said the prognosis is usually "pretty favorable," and though he can't promise anything, he hopes Spencer will be able to become independent and walk without assistance some day.
The Browns credit much of Spencer's progress to skilled doctors, nurses and therapists, and caring family, friends and neighbors. Combined with their own faith, constant prayers, determination, hard work and dedication to each other, they believe everything will be OK.
"Frankly, I wouldn't want to be here if I didn't have her here with me," Spencer said of his wife of six years.
Mornings in the Brown home begin in the master bathroom. Spencer can mostly get himself out of bed and into the shower, at first using a wheelchair but now a walker or forearm crutches. He and Ellis work to get him undressed and seated on the shower chair. Four-year-old Isla and 2-year-old Aurora wake up about the same time. Ellis brings them into the bathroom and gives them breakfast. Books or dolls keep them entertained while she helps her husband shower. It takes two hours.
"I'll have a bar of soap in one hand and a Barbie in another hand," Ellis said.
Spencer has come a long way since the first week in intensive care when he couldn't feel or move any part of his body from the neck down. At one point, he could swing his left arm up to his stomach but couldn't move it back. No wrist, finger or thumb movement. He also had a hard time recognizing the left side of his body from the right. When his shoulders started to come back, he'd shrug his left but thought he was shrugging his right.
Even as his prognosis was uncertain, Spencer had graduating from NYU on his mind. On his first day in the ICU, he completed a class assignment telling his brother what to type and where to move the mouse on the computer. He got an A.
His doctors one day came into his room asking the Browns if they realized how lucky they are. Really? You think we're lucky? The doctors explained that the majority of people with Spencer's injury die almost immediately or die on the way to the hospital. A C3-C6 spinal cord injury can cut off a person's airway. Spencer was underwater. He hit his head. It couldn't have been a much worse scenario. He and Ellis consider it a miracle that he was able to breathe the whole time.
The Browns asked the doctors in those first few days if they thought Spencer would stand or walk again. They were always noncommittal.
No one who treated Spencer early on expected him to be able to use his arms and legs, Van Boerum said. He called his progress unbelievable.
"Going from where he was those first few days and first few weeks where he was doing almost absolutely zero to the point where he's doing what he's doing now, that's not normal. That's exceedingly rare," the doctor said. "He's the one-in-a-million guy."
Van Boerum attributed much of Spencer's recovery to his hard work and sheer determination, but said there's another factor at play: the miraculous part or the unexplainable part, the divine intervention.
Spencer spent 97 days in the hospital before going home to his in-laws' house in Alpine last November. Ellis, in her pregnant condition, never left his side. The Chaffetzes remodeled parts of the upstairs, put a lift in the garage and moved themselves to the basement.
Spencer does occupational and physical therapy at Neuroworx in Sandy two hours a day, five days a week, with various family members playing chauffeur. His clenched hands might be the most impaired part of his body. He reaches and grasps small objects over and over again and strings tiny beads to build dexterity while his arm is fed electrical impulses. He works on standing, balancing and walking. His right side is clearly weaker than his left.
"Feel solid?" physical therapist assistant Mike Erickson asked him one day as he steadied himself between parallel bars for a walking exercise. "Solid as water," Spencer replied.
The mentally and physically taxing sessions along with his numerous medications leave him exhausted. He naps in the afternoon, rides a recumbent bike, has dinner with the family, cuddles with and reads with his older daughter in a special chair in her room before bed and does his PT "homework." And then does it all over again the next day.
Recovery from a catastrophic spinal cord injury is glacially slow, said Neuroworx Executive Director Dale Hull. Like a glacier, occasionally a big chunk falls off but mostly there's just a lot of creaking and groaning.
The "holy grail" of paralysis is walking, but not everyone walks again and it's rare to have 100% recovery, he said.
Neuroworx, a nonprofit Hull co-founded with physical therapist Jan Black in 2004, has been accused of giving people false hope or a promise that they'll walk again. But Hull said false distress is just as damaging.
"We understand there's a limit to what we can do and we know we're not going to make everybody walk, but if we make their spirits walk, that becomes a really critical part of this whole thing," he said.
Neuroworx, which takes an innovative, evidence-based approach to physical therapy, does provide hope, but it comes with a plan. Attitude and frame of mind play a critical role in how far a person progresses, he said. Buy-in and trust in the program are key.
Hull calls it the "remarkable journey." He knows what he's talking about from personal experience.
A practicing OB-GYN in 1999, he was injured doing a backflip on a backyard trampoline, leaving him paralyzed from the neck down. Though he had a significant amount of neurological recovery, he left the hospital wheelchair-dependent, with little functional ability and needing assistance for most activities. He met Black seven months after his accident.
Two-and-half years of physical therapy in his basement and community swimming pools under her direction culminated in Hull walking with the Olympic torch ahead of the 2002 Winter Games in Salt Lake City.
Spencer, Hull said, has a lot of potential but it's going to take time.
"I think the hardest thing for all of us, and I think it's hard for Spencer, too, is patience," he said.
Physical therapist Matt Hansen said while the quality of Spencer's walking has improved the past five months, the mental aspect of recovery can be just as difficult as the physical.
"We've definitely had a lot of days where therapy was just talking about things," Hansen said.
Though he generally has a good attitude, Spencer gets frustrated and annoyed that he's not progressing as fast as he wants to. He said it's like watching water boil or grass grow. It took him awhile to realize that he has physically changed and life will never be the same. There are things he can't do anymore, like gather his daughters in his arms and pick them up. Some days he wonders if all the tedious exercises are worth it.
He felt especially low after having a Baclofen pump implanted in his abdomen. The hockey puck-shaped titanium device dispenses medication to ease the muscle spasms through a thin tube that snakes up his body into his spinal canal.
"I'm a freakin' robot," he said.
Doctors told him it would keep his legs from bouncing all over the place when he stood up and tried to walk, but it didn't immediately work. "It's like a magic bullet, right?" Spencer said. "But it's not." With some adjustments, though, the pump performed better, though he still deals with spasticity. The medication leaves him foggy but he said that's better than not being able to walk.
An extrovert, Spencer gets energy from being around other people. Humor and sarcasm help him cope. Like saying this July 29 — the one-year anniversary of his accident — that he plans to get in the pool, maybe swim around a little bit.
"Joking, laughing is like how I get through this sucky injury that I got," he said.
Since the day Spencer arrived home from the hospital, two men from his congregation in The Church of Jesus Christ of Latter-day Saints come over each night to put him through the paces of physical therapy — which now includes actual paces. At first, it just involved hand dexterity exercises and getting Spencer into bed, which was no small production.
Clint Curtis, one of the regulars, remembers going to his car and crying after his first night at the house. Now, Spencer can get in and out of bed mostly by himself. He gets around the house gripping a walker or forearm crutches but continues to practice walking on his own. He started a "wheelchair fast" a while back, using it only for outings away from the house.
Curtis and the others serve more as spotters as Spencer makes deliberate laps around the kitchen and family room with a crutch in an old pair red-and-white Adidas basketball shoes on some evenings. He has even taken some steps in the backyard — around the edge of the swimming pool.
On a recent night, Spencer slowly lowered his body from the walker to a prone position, knee by knee and hand by hand, with Curtis making sure he didn't tip over. It took 10 minutes. As painstaking as it was, getting to the ground was the easier part. The idea of the exercise is to learn to get up. That took longer.
Walking with little to no feeling in his legs has its hazards. Spencer toppled face forward once at rehab with a therapist holding a safety belt around his waist landing on top of him. Another time, he fell in the garage, a stack of boxes helping to soften the landing. He called a friend on his Apple watch to get him upright. Both times he came out unscathed.
Most people with severe spinal cord injuries plateau in their physical progression in the first 18 to 24 months. If they can't walk by then, they probably never will. Spencer said you get what you get and you don't whine about it.
"Have you heard of Shawn Bradley and his story? We didn't have the same injury but it was similar in that it was a spinal cord injury," he said, noting Bradley remains in a wheelchair. "I'm pretty blessed that I can get up and move."
Bradley, the 7-foot-6-inch Utah native and former NBA player, was hit from behind while riding his bicycle a few blocks from his home in St. George. The accident caused a traumatic spinal cord injury, ultimately leaving Bradley a C-6 quadriplegic. He has no sensation or function from the top of his rib cage down.
Like Bradley, Spencer played basketball in high school and had a short stint as a walk-on at Utah Valley University, where he met Ellis and graduated with a degree in information systems in 2016. His first job was in cybersecurity at General Motors in Detroit. He worked on his master's degree from NYU during that time.
Three years later, the Browns relocated to Charleston, South Carolina, when he took a job with Qualys, an information security and compliance company. Their return to Charleston is uncertain.
Spencer is back at work part time from home. His hands and fingers have regained enough function to do some typing on the computer and texting on his cellphone. He also has managed to drive the family van equipped with hand controls. A strained neck, though, has kept him from getting behind the wheel the past few weeks.
It was on a visit to her parents' house last summer that Ellis decided to throw Spencer the pool party. Even small decisions can change the course of life.
"Like one dive, huh?" Spencer said. "I try not to think of what if. What if I would have done this? What if Ellis didn't throw me a graduation party? I try not to have any of those type thoughts. It doesn't do you any good. You can't change anything, right? It happened. It is what it is."
Ellis Brown is her own kind of rock star. She never thought she would be someone's caretaker in her mid-20s but she is grateful that she's young and healthy.
She recalled feeling overwhelmingly sad one night in Spencer's hospital room. She sat on the bathroom floor and quietly sobbed so she wouldn't wake him.
"I just kind of felt this loss. I had this beautiful life. We really didn't have huge challenges or trials at that point," she said. "I remember feeling like my life is probably forever going to feel like a big chore because I'm now never going to have time for anything except to care for my kids and my husband.
"It just kind of hit me. This is a really long road and it is going to require a lot of work. Then little by little, things started coming together."
They're still coming together. Monday's graduation was another step in Spencer and Ellis Brown's remarkable journey.