SEAN LINEAWEAVER

Sean was born to Frank and Toni Lineaweaver on June 10, 1969 in Hartford, Connecticut. Sean was named after Sean Connery, as "Sean" was the only English name his Spanish-speaking Argentine mother knew. His dad liked the sound of "Sean Kenneth", feeling it beat like "Jean Luc". Sean was so loved that his father still carries a wallet-sized photo of infant Sean, with white-blonde hair and moon-shaped, dark brown eyes. The young family moved to Greenwood Village, Colorado before Sean turned two; he spent his entire childhood within this community, attending Cherry Hills Elementary, West Middle School, and Cherry Creek High School. His childhood joys came from being outside: hiking, skiing, camping, playing soccer, running, riding bikes, and shooting hoops. He was a singer and bass player in high school garage bands and his school show choir. He loved animals and brought several strays to his mother’s house. He was a world traveler, having spent extended time in Argentina and Europe. He even went to the Soviet Union in 1985, only after receiving a debriefing from Ollie North. Yes, that Ollie North. He was a member of Mensa. He could rebuild a carburetor. He was a talented graphic artist and had impeccable handwriting.

 

He attended the University of Colorado, Boulder, earning a BS in Aerospace Engineering in 1991 and a MS in Electrical Engineering in 1994. He moved to Seattle in 1994 to attend the University of Washington with the intention of earning a PhD in Electrical Engineering. Sean was a literal rocket scientist who decided to become a brain scientist. His college claims to fame were the construction of an eight-foot snow penis on his front lawn that caused at least one car accident and wearing boxers (only) on the cover of the CU paper, The Daily Camera, declaring “Finals Suck”. He picked his college major only because “it was the hardest major at CU” and was published and had presented before he graduated with his bachelors. He drove a 1964 ½ black Mustang, simply because it was cool and James Caan drove one in "Misery".

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Sean was handsome and talented and gifted with nothing ahead but opportunity. He had celebrations, heartaches, disappointments, and triumphs. He was alive in all the best ways. 

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Things changed shortly after his move to Seattle in 1994. Being the nauseatingly fit person that he was, he rode his bike from Ballard to Seattle. The route he took involves a hill so obnoxious that only fools and people with something to prove would think of it as a basic commuter route. Sean noticed progressive loss of vision while biking. His vision would restore once he rested. His vision began to blur occurred at earlier points in his daily ride. He would later reflect that there were times in college that his eyes would fail in the lecture halls. He went to get his eyes checked, only to discover that his vision was perfect. He became a legally blind person with "normal" acuity; the MS took away his brain's ability to resolve images and motion. After a hospitalization, he was finally diagnosed with Multiple Sclerosis. He was told to drop out of his PhD program, given a prescription of Amantadine (on off-label Parkinson’s drug to treat his crippling fatigue), and told “to go home to die”.  His prognosis was poor. (I recently read his initial radiology report, which was at the bottom of the box that had been shipped cross country twice. It reads like a nightmarish harbinger of what was to come.)

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Multiple Sclerosis was the main character in his life from that point forward. It became the dragon to slay, the boogey-man to outrun, the opponent to outsmart. As Sean was a person who always won, always came out on top, MS became the ultimate dare. Sean enrolled in every study available, from magnets, to cooling suits, to huckster lotions, and naturopathic fixes. Handfuls of supplements. Cups of non-saturated fats. Weight training. He maintained a diet that he was convinced would make all the difference, but acknowledged that the double blind wasn’t available, so he admitted that the science didn’t support his choice. He continued to play with his diet until his neurologist indicated that he was running out of time. He tried everything he could think of to head off the danger lurking ahead. 

 

He kept living his life. We got married. We had kids. He finished his PhD, taking the world’s longest course after three false starts and the loss of funding following 9/11, and a small long-term co-opting of a UW computer. But, he finished. He was hired at Cochlear, where he spent the entirety of his career. He defined himself by his work, particularly with “The GA” (genetic algorithm). He wanted to develop technology that ultimately helped people and provided effective interface for clinicians. As a person who understood issues of access, inclusion, and parity, he wanted people who chose cochlear implants to have optimized experiences. His passion was the knowledge that his work was improving outcomes for patients and the clinicians who served them. He wouldn’t say it, but I will. He was an incredibly prolific developer of intellectual property for Cochlear. At my count, he earned forty-two patents for his work with machine learning, artificial intelligence, cochlear implant fitting and training, and cochlear implant optimization. He also has the distinction of being listed as an author of a study presented after his retirement.  He was a practicum shy of his AuD, having returned to CU in 2004 after deciding that intimate knowledge of the clinical perspective would serve his work. His resume was nine pages long and he has a blurb about his work in a popular non-fiction book on math. He was that guy. He was extra.

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We were creating a life and doing what most people do. We were raising Aidan and Catherine, slogging the days and speeding through the years. I won't paint this as an easy feat. Supporting Sean required a great deal of work from all of us, to accommodate him and modify expectations as his energy was spent primarily with his work and his overall function worsened. MS stole the show and sucked the oxygen out of the room. Our kids learned that we were all on Team Sean and it was all of our jobs to help him navigate his path. While I think they learned lessons of being members of the community and putting aside their needs in favor of their dad's, I understand that they had a very different childhood than most kids. Aidan said that we were like a three-person NASCAR pit crew, operating with speed and efficiency to fill in, support, and anticipate his needs. Our rhythm became so regular that the only words that were needed were the ones to gather all of the players. That's one of the things that makes The After so difficult. We were all satellites in Sean's orbit. Without him, we're left wondering what to do and where to apply our energy and attention. 

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Work became a huge part of his identity and his self-esteem, particularly in the absence of the physical opportunities that he used to enjoy. Travel became prohibitively difficult and fraught. He could no longer run or bike or camp or ski. He lost his hands relatively early, so he could no longer play music or write or draw or tinker. He could no longer sing. He Rip Van Winkled through much of our lives, simply because he was too exhausted from his relentless work schedule. Work was the last thing he could do. His life tunneled into his kids and a well-worn path between his desk, the bed, and the couch. Every bit of himself went into his work.

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The opportunity came up to work remotely. At that time, we decided that remote work could be done from anywhere. This, coupled with research opportunities at UW, drove us back to the Pacific Northwest. We settled in Gig Harbor. This is when the disease started gaining on him. He no longer had a reason to get dressed and interact with people on a daily basis. I don't know whether this was a relief or a burden for him. Maybe it was both. 

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He started using a power chair, but just for outside travel. He walked with a cane indoors but fell nearly five times per day. I don't know how many times he gave himself concussions or significantly hurt his arms, back, and hips. He reopened the scar on his eyebrow from a fall as a toddler more than once.  He split his chin and chipped off his front teeth to the point that they were mostly bonded into normalcy. I'm certain that he broke his collar bone at least twice. His right arm could not be elevated, because he thrashed his rotator cuff. 

 

He began an insane process of working around the clock, twenty-four hours per day, seven days per week, to compensate for his rate of production and his need for frequent rest. He would start around midnight, work until four, sleep until seven, take the kids to the bus, work until noon, sleep until three, pick up the kids, work until dinner, and sleep until midnight. This pattern was necessary to cope with the intense, unmitigated fatigue and the natural slowing of his rate of production, due to the loss of his vision, the loss of his hands (he used a single finger or pencil in his teeth to type), and loss of speech clarity that impacted his use of voice-to-text software. Sean worked like this, every day, until his last day at Cochlear. He loved the work. But more than that, work represented his last tie to "normal". While this pace is not sensible or healthy, it really was the last tie he had to who he knew himself to be. And he was willing to sacrifice almost anything to maintain that tie.

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Once he retired, his health precipitously failed. While his relentless work schedule was untenable, he was rudderless without the direction and stimulation that provided. It was like his lynch pin was pulled. The avalanche of symptoms that he held off with sheer force of will broke free. There is a quote by a blogger with MS named Marc Stecker. He wrote, "What demoniod could come up with such a disease, a fiendish thing that forces you to watch yourself disappear but then doesn't have the good manners to finish you off?" Sean felt this every day. Felt himself being erased. Felt all that defined him disappear. That erasure occurred unabated without the goal of "normalcy".​

 

I would be remiss to not mention my own feelings about Sean and the anticipatory grief that accumulated from the day I met Sean. To paraphrase my mom, this has been a slow-motion car crash since day one. While this describes my feelings, it likely pales in comparison to the profound sadness Sean felt. To lose who he knew himself to be. To thwart who he wished himself to become. To compromise his ability and his dignity and his agency. As a natural do-er, I can only imagine how disruptive this was to his very essence. He grieved himself every day. 

 

Sean wasn’t a saint. He was moody and mercurial. He had a temper that could flare without notice. More than one person has used the word "explosive" when discussing Sean. He loved causes, but really didn't like people. He was decisive to the point of being unreasonable when compromise was required. He could be rough with his words. He shouted his needs and whispered his gratitude. He was often dismissive of other people’s concerns, because his needs and his struggles outweighed any that anyone else must have. He had a habit of sharing kind words to intermediaries, rather than telling people directly. Similarly, he could be resentful of the help that he needed and ambivalent about the commitment all of us made to support him. These are the things that could have been so critical to hear from him. I often felt like I was an on-call servant or nurse. He became increasingly dependent, which created a dichotomy in which he resented that he needed the help, felt like his dignity was insulted, but was too impatient with his inability to help himself. He became cranky when confronted with the logistics of his MS, which became increasingly frequent. He wasn’t easy to get along with, mostly because he never, ever accepted that he was a person with an illness; he was the illness. I never could figure out how to support him in making a true distinction between himself and a diagnosis. He became as thorny and overwhelming as his symptoms. 

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I love Sean.  Beyond all reason. I love him. Our relationship was complicated and messy. I made mistakes and said things that I wish I could unsay and did things that I wish I could undo. I certainly could have been more tactful and graceful. I was often resentful of the oxygen his needs sucked out of the room. I could have appreciated him more and offered him more understanding and less defensiveness and hurt. After all, despite the litany of indignities and the impact of his illness, he kept going. I believe he kept going for our kids and for me. How does one express appropriate gratitude for another literally burning himself out for my benefit and the benefit of our kids? But I lived for those moments of his twinkly brown eyes and his lopsided smile. His droll and dry comments that hit the spot. We shared the intimacy of people who grow up together, start their lives together, and build the foundations of life together, and then have the added experience of fighting alongside each other for decades. There was no mystery between us. We had the shorthand and telepathic communication that only comes from being braided into another's souI.  We lost the ability to shock each other, because we were so emotionally intimate. I not only grieve him, but the knowledge that the person who knew me the best is gone, because the person I know best is gone. 

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I am endlessly proud of him and was endlessly proud of being his person. He taught me to be brave and to persevere, even when the outcome is uncertain. He taught me the power of hope, even in the face of ridiculous odds. He taught me to be relentless and tough and unflappable. He taught me to advocate for others. He taught me that the game is never over, so long as you keep playing. There's an unbelievable competence and confidence that can only come from having to look hard things in the eye - every day - and knowing that you will make it through. Once you have that epiphany, you have unlimited freedom to risk, perhaps not unscathed, but certainly wiser, tougher, and more prepared for the next obstacle. He gave me that opportunity. 

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Sean loved ice cream, Harry Potter, JRR Tolkien, Philip Pullman, true crime shows, adult cartoons (The Simpsons, Rick and Morty, etc), basketball, the outdoors, and futbol. He had nearly encyclopedic knowledge of college basketball players from the 1990s. He took most of July off when the Copa du Mundial was running, so he could watch the matches live in Spanish and root for Argentina. He would tell the Hand of God story - repeatedly. His politics were never far from him and was so consumed with hate for W that he almost had nothing left when the Tangerine Tornado came to town. He wore the crappiest, most jack ass t-shirts, but also plain old and crappy t-shirts. He wore a baseball cap most of the time. He was droll and always good for a one-liner. He was never without a dog. He dreamed in Spanish. He loved pumpkin pie and vanilla candles, and key lime pie.  He collected collections -- coins, comic books, Magic Cards, Simpsons figures. He loved our front porch and back patio, where he could go outside in the quiet and smell the air. He loved his kids most of all. 

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The truth is that I'm most worried about Aidan and Catherine, who share so much of their dad in the way they talk, think, and look. They have watched their dad become an incrementally distorted version of himself. They will have to learn to live without him, while seeing his face in their own and living the kind of lives that he was never able to enjoy for himself. 

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Sean was preceded in death by his dogs, Jane, Simon, and Mingus and his best friend, Rick Martinez. He is survived by his parents, Frank and Mary Ellen Lineaweaver of Canon City, Colorado and Toni Lineaweaver of Evergreen, Colorado; brother and sister-in-law Mark and Kim Lineaweaver of Arvada, Colorado; my parents, Bob and Marianna McClellan of Mountlake Terrace, Washington; our kids, Aidan and Catherine; nieces and nephews (Riley, Brody, Timmy, Ben, Danny, and Maizie); in-laws and outlaws Skeeter McClellan (Rachel Richter), Andrea Cheney (Dave), and Katie Lovitt (Timm); and, numerous aunts, uncles, and cousins.

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And me. I'm still here, having been forever marked and changed by Sean Lineaweaver. 

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--amy