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Cody Matsuda

Cody Michael Matsuda was a mixed-race Japanese American and white disability-rights advocate, author, and speaker born on February 15, 1979, in Pasadena, California. He developed a comparatively milder but still disabling adolescent presentation of ME/CFS that was severe by later adulthood, and he spent years having his exhaustion, pain, and loss of function dismissed. A suicide attempt with his prescribed fluoxetine in spring 1995 caused a seizure, cardiac arrest, and anoxic brain injury. Cody survived with acquired motor apraxia of speech and post-anoxic epilepsy, becoming nonspeaking while retaining his intelligence and language comprehension.

Cody communicated through American Sign Language, augmentative and alternative communication, writing, vocalizations, facial expression, gesture, and movement. He later wrote about presumed competence, communication access, chronic illness, autism, and medical dismissal. His public life grew from the same directness, intellectual intensity, dry humor, and refusal to perform normalcy that shaped his private life with his family and his husband, Andy Davis.

Early Life and Background

Cody was the second of four children of Ellen Matsuda and Greg Matsuda. His older sister, Susie, was followed by Cody, Pattie, and Joey. During Cody’s spring 1995 crisis, Susie was seventeen, Pattie was twelve, and Joey was seven; each turned eighteen, thirteen, and eight later that year.

Greg was a third-generation Japanese American professor of educational psychology with a doctorate from Stanford University. Quiet, direct, and intellectually focused, he recognized parts of himself in Cody long before either of them had an autism diagnosis. Greg received his own diagnosis in the late 1990s. Ellen was white, came from the wealthy Moore family, and worked as a social worker, disability-services advocate, and regional-center quality-assurance and client-rights investigator. She served as interim administrator of Harmony House, later renamed Rosewood Community Home, during 1994 and 1995 and was especially close to her youngest sister, Heather Moore.

Disability rights were part of Cody’s family life before his own disabilities were understood. The extended Moore family included lawyers, physicians, educators, and activists, and Heather, born in 1968, lived with Ellen’s parents during Cody’s youth. She had grown up within the family rather than being institutionalized because Bill and Dorothy Moore refused to surrender her to that system. Even in a household alert to disability discrimination, however, Cody’s invisible chronic illness went unrecognized by clinicians for years.

Cody strongly resembled Greg. He showed an early capacity for complex ideas, intense curiosity, and interest-driven concentration. He was twice-exceptional, with an IQ above 140 alongside autism that was not diagnosed during childhood. He could master difficult material quickly while still missing sarcasm, deception, and the social motives of people around him.

Education

Cody attended Pasadena public schools through the first half of his sophomore year. He earned good grades and remained academically capable even as brain fog and exhaustion made attendance and concentration increasingly difficult. Teachers saw an intelligent student who sometimes slept through class and interpreted his behavior as ordinary teenage tiredness rather than illness.

School was also socially dangerous. Cody’s direct, literal trust made him vulnerable to classmates who lied to him, tricked him, or disguised cruelty as sincerity. He often understood what had happened only afterward. Pattie fought students who exploited him, while Cody rarely fought back; physical confrontation did not suit his temperament, and he seldom had the energy for it.

By spring 1995, Cody’s attendance had become sporadic. He slept during lunch, study hall, and sometimes class, then went home and crashed for two to four hours before waking to complete homework. Extracurricular activities, sports, parties, and ordinary time with friends cost more energy than he had. Weekends were often spent recovering enough to return to school.

After the 1995 crisis, Ellen and Greg withdrew Cody from traditional school. The Matsuda and Davis families established the Matsuda-Davis Homeschool Cooperative for Cody and Andy, which ran from fall 1995 through spring 1997. Lessons alternated between the two homes four days a week, with Fridays available for field trips or flexible work at either house. Ellen taught history, social studies, and disability rights; Greg taught mathematics and science; Sarah Davis taught English, literature, and creative writing; and Marcus Davis taught practical life skills, first aid, and emergency preparedness.

The school day generally placed academics from 9:30 to 11:00 a.m., mandatory rest from 11:00 a.m. to 1:00 p.m., and further work from 1:00 to 3:00 p.m. when either student’s health allowed it. Cody could work lying down, type or sign his answers, use AAC, and stop when fatigue made continuing counterproductive. Andy could use audio recordings and revisit material. Both students could move quickly through subjects they understood and slow down when pain, seizures, or fatigue required it.

Freed from attendance demands and the need to conceal exhaustion or autistic traits, Cody flourished academically. He wrote college-level history essays and engaged Andy in sustained, complex discussion. The cooperative did not reduce expectations; it removed the barriers that had prevented both students from showing what they knew.

Cody and Andy passed the California High School Proficiency Exam in spring 1997. Cody used typing and AAC accommodations and scored highly. He attended Pasadena City College with Andy from fall 1997 through 2000. The flexible course schedule and accessible campus reduced some of the pressure of secondary school, and the two took many classes and studied together while managing their disabilities. They intended to transfer to four-year universities and were laying the educational foundation for their later advocacy work.

Ellen later described the cooperative in her 1998–1999 essay “The Homeschool Cooperative That Saved Two Disabled Boys.” The essay presented the program as an alternative-education model in which disabled students could meet rigorous expectations once attendance, communication, and bodily access stopped being treated as obstacles of character.

Career

Main article: Cody Matsuda (Career and Legacy)

Cody began writing about medical dismissal, communication access, and presumed incompetence while attending Pasadena City College. By the late 1990s, he was developing the work that made him a disability-rights advocate, author, and speaker. He used AAC and ASL interpreters for public appearances and did not allow either communication method to be treated as evidence that someone else had authored his ideas.

His memoir Voices Beyond Speech was published circa 2015–2016. It combined standard English, ASL-influenced English, photographs of signs, AAC-screen images, visual poetry, and QR-linked signed passages. The book addressed childhood illness, the 1995 crisis, communication, presumed incompetence, autism, medical trauma, family, and his relationship with Andy. Chapter 9, “My Mother the Dragon,” examined the conflict between Ellen’s disability-rights work and the control she sometimes exerted over Cody after he became nonspeaking.

Cody also wrote “Invisible Until Inconvenient: CFS, Masculinity, and Medical Dismissal.” Charlie Rivera read the essay at nineteen in 2027 and broke down because it named his experience. After receiving his own ME/CFS diagnosis at twenty-two, Charlie cited the essay repeatedly in his advocacy.

By the 2030s, Voices Beyond Speech was required reading in AAC-advocacy circles, was cited by researchers studying communication and presumed competence, and had become a model for later multimodal authors. Its form influenced accessible publishing practice as well as the public conversation around nonspeaking authorship.

By 2033, Cody and Andy were established writers, co-authors, and keynote speakers whose professional work sometimes overlapped while retaining distinct areas of focus. Logan and Charlie had grown up reading them; Charlie cited Cody often enough that Logan teased him about it. Cody’s work influenced policy, and his philosophy of pacing and rest directly informed the access policies Charlie and Logan built into Rising Notes Music Camp in 2038.

Personality

Cody was intelligent, curious, empathetic, and intensely absorbed by subjects that interested him. His thinking was logical and structured, and he preferred clear explanations to implication. Before his autism diagnosis, those traits were often seen separately: academic ability was praised, while literalness, missed subtext, and the need for direct communication were treated as personal failings.

He was socially trusting, especially as a teenager. He expected people to mean what they said and did not reliably detect sarcasm, flirtation, hidden motives, or a joke made at his expense. Cody was genuinely attractive and received prospective attention at school, but exhaustion and difficulty reading social cues meant that he often did not recognize it. Max sometimes had to tell him that someone had been flirting; Cody’s response could be little more than a tired, surprised shrug.

Cody was gentle and not naturally confrontational. He understood Andy’s pain and exhaustion without judgment because he knew what it was to have a body other people disbelieved. Before his attempt, that gentleness existed alongside profound hopelessness. He wanted someone to believe that he was ill, name what was happening, and stop treating his inability to push through it as laziness or weakness.

Survival did not turn Cody into a placid or grateful version of himself. As he recovered, he became more physically expressive and openly teenage: stomping when angry or excited, clapping for emphasis, making rude gestures behind Greg’s back, signing insults before his parents knew enough ASL to catch them, slamming his bedroom door, and hissing when annoyed. Ellen found the ordinary defiance reassuring. “He’s still himself,” she said. “Even moreso than before the attempt, honestly.”

As an adult, Cody’s humor sharpened into dry sarcasm, especially in ASL. He became more willing to identify injustice publicly and less willing to make his communication, autistic needs, or fatigue socially convenient for other people. He learned to ask for help, pace his energy, refuse plans, and state access boundaries before his body forced the decision. Those practices never made rest effortless; his old impulse was to push until he crashed, and he repeatedly had to choose against it.

Cultural Identity and Heritage

Cody was fourth-generation Japanese American through Greg and white through Ellen. He described himself as Japanese American, white, mixed-race, and multi-ethnic rather than using hapa. He also identified as gay, autistic, chronically ill, disabled, and nonspeaking.

His public work considered how those identities shaped medical encounters, communication access, and other people’s assumptions about competence. Although ASL became one of his primary languages, Cody did not claim Deaf identity. He approached ASL as a language and community practice rather than treating it as a substitute for spoken English.

Cody’s strong resemblance to Greg made him subject to racial assumptions as well as recognition as his father’s son. The model-minority expectation that an Asian American boy would be naturally studious, compliant, and self-disciplined complicated the dismissal of his chronic fatigue. His inability to stay awake in class or sustain ordinary school demands was treated as a failure to fulfill that expected potential. The racialized expectation reinforced the reading of illness as willfulness rather than prompting recognition that he needed medical care and accommodation.

After Cody became nonspeaking and began using a wheelchair, presumed intellectual incapacity compounded those racial assumptions. His AAC, signing, and mobility equipment did not fit the uncomplicated achievement people had expected from him. He confronted both the demand to perform exceptional competence and the refusal to recognize the competence he retained.

His authorship occupied an underrepresented place within Asian American disability narratives. Through work such as Voices Beyond Speech, Cody brought Japanese American and mixed-race experience into accounts of chronic illness, autism, nonspeaking communication, and queer adulthood. His work challenged the separation of racial identity from disability in both disability studies and Asian American literature.

Cody’s paternal family history included relatives incarcerated during World War II. Gaman, the endurance of hardship with patience and dignity, was part of his own cultural inheritance. He answered the expectation of bearing suffering quietly by refusing enforced silence. Writing about medical dismissal, Ellen’s presumption of his incompetence, and the cost of performing normalcy gave that refusal a specifically Japanese American meaning in his life. He used technology, sign, and published words to tell truths that quiet endurance alone could not make other people hear.

Speech and Communication Patterns

Before the anoxic injury, Cody spoke in a quiet, measured, and precise manner. His delivery could sound formal, with limited inflection and carefully chosen words. He communicated literally, expected similar directness from other people, and became quieter still as fatigue increased.

The 1995 brain injury left him with acquired motor apraxia of speech. He understood language and formed complex thoughts but could not reliably plan and sequence the movements required for intelligible speech. Early attempts demanded visible effort and produced incomplete sounds such as “Fff… mmmm…” when he was trying to say five more minutes, “Tuh… tie…” for tired, “Sss… suh…” for sorry, or “Mmm…” for Mom. Writing and typing remained available but were slower and more physically difficult immediately after the injury.

Cody retained laughter, crying, gasps, hums, whines, and other emotional or intentional vocalizations. A short “Mmmm,” a drawn-out “Ehhhhhh,” or a sharp “Ah!” could carry urgency, agreement, protest, or a question according to pitch, duration, and context. He used a loud vocalization over the telephone to wake Andy, made drowsy hums while fighting sleep, and could turn a wordless whine into the full meaning of “I don’t wannaaaaa.” Andy and Cody’s family learned those distinctions. His laugh remained fully his own, and hearing it return after the injury became an important milestone.

His first speech-generating AAC equipment in 1995 was heavy, slow, and conspicuous. The synthesized voice embarrassed and frustrated him because it did not sound like him, and fast conversation often moved ahead before he had finished typing. Even so, the device gave him independent access to people who did not sign and supported complex written expression. He used the Matsuda household computer and home internet, and typing and AAC became ordinary parts of his education and later work.

Cody began learning American Sign Language with his family in 1995. ASL quickly became faster and more expressive for him than AAC. It felt authentic in a way his early synthesized voice did not, and signing became liberating rather than merely functional. By 1996–1997, he could argue, joke, and discuss complex ideas in sign. His hands moved with precision when he had enough energy. With fatigue, they shook or his signing became less exact, cues that Andy learned to read before Cody reached a full crash.

His communication extended through his entire body. Rapid, light stomps conveyed excitement; heavy ones marked anger; a persistent rhythm demanded attention. He clapped quickly for enthusiasm, used a single sharp clap for agreement, and could deploy a deliberately slow sarcastic clap. He slapped a tabletop to punctuate a point, crossed his arms and turned away for a full-body refusal, tossed a sock or pillow at Greg when annoyed, physically pulled someone toward whatever he wanted to show them, and tugged on Andy’s chair or clothing when he needed his attention. His eyebrows, mouth, posture, and gaze carried as much nuance as his hands.

No one mode replaced the others. Cody chose among ASL, AAC, writing, typing, vocalization, expression, gesture, movement, touch, and silence according to his body, audience, environment, and purpose.

Health and Disabilities

ME/CFS

Cody developed a comparatively milder but still disabling adolescent presentation of ME/CFS around age fourteen, after a bad flu during his freshman year of high school. The exhaustion was bone-deep and unrefreshing; sleeping longer did not return him to baseline. Physical or cognitive exertion could trigger post-exertional malaise and crashes lasting days. Brain fog impaired concentration despite his high intelligence, and he also experienced pain, weakness, reduced upright tolerance, and a sharp loss of social life and access to conventional schooling. His ME/CFS was severe by later adulthood.

Clinicians repeatedly returned normal test results and attributed his symptoms to ordinary tiredness, poor sleep habits, laziness, or depression. Recommendations to exercise and push through worsened the illness. Cody’s depression was real and needed treatment, but using it to explain away every physical symptom left the ME/CFS unaddressed. Working diagnostic criteria existed by 1995, yet Cody remained without a formal ME/CFS diagnosis through at least 1997 and did not receive proper recognition until the 2000s.

Daily activity required calculation. Dressing, travel, sitting upright, walking through a public space, and conversation all drew from the same limited energy supply. An outing that appeared manageable while it was happening could cost several days afterward. Cody learned pacing slowly and often against his instinct to keep going until his body stopped him.

The spring 1995 crisis

In early 1995, roughly two months before the attempt, Cody was prescribed fluoxetine for depression. During a later appointment with Dr. Sato, he said, “I don’t want to wake up tomorrow.” The physician dismissed the statement as “typical teenage melodrama” and did not arrange an emergency psychiatric evaluation. Ellen took Cody home in reliance on that assessment. Cody attempted suicide with his prescribed fluoxetine later that day.

Ellen found him at approximately 7:00–7:30 p.m. and called 911. He was admitted to County General on a Monday, where the overdose was followed by bradycardia and arrhythmia, a seizure, cardiac arrest, resuscitation, and anoxic brain injury. He required ventilation, and his survival remained uncertain for several days.

When Cody woke on Friday, Ellen was crying beside the bed and holding his hand. He was disoriented, nauseated, severely weak, and in pain from intubation. He had a severe headache and struggled to move. His first efforts to speak failed, while shaky writing showed that he remained conscious, literate, and able to understand what was happening. The injury resulted in acquired motor apraxia of speech and post-anoxic epilepsy.

His preexisting fatigue and pain did not disappear. During four-hour neurological checks, staff sometimes needed nearly ten minutes to wake him, and he fell asleep again within a minute or two of completing an assessment. Nurses Maria and Denise initially suspected medication-related sedation, and Dr. Chen held his oxycodone while the team reassessed. The exhaustion persisted.

Maria asked Ellen, “Has he always been this difficult to wake?” Ellen answered, “Yes. For about two years now,” and described Cody falling asleep with a fork halfway to his mouth while clinicians attributed the problem to depression or laziness. Maria had encountered ME/CFS in a nursing article and recognized that the pattern extended beyond the overdose and brain injury. “I am saying that what you’re describing sounds like what that article talked about,” she told Ellen.

Maria documented Cody’s longstanding fatigue and told Ellen, “We need to work with it, not against it.” Ellen answered, “No one’s ever believed me before. Or him… And now you’re seeing it, and I’m—I’m relieved that someone finally sees it.” The admission became the first time a medical professional recorded the severity of his baseline exhaustion instead of dismissing it.

Recovery included psychiatric hospitalization, intensive therapy, medication changes, safety planning, and family therapy. Cody continued living with depression and developed PTSD related to the attempt, intensive-care treatment, medical dismissal, loss of control, and sudden loss of speech. Hospitals and clinical encounters could reactivate that trauma even after he became an experienced self-advocate.

His post-anoxic seizures were difficult but not refractory. Stress, sleep disruption associated with ME/CFS, and severe fatigue could increase his seizure risk, requiring management that accounted for the interaction among neurological injury, chronic illness, and rest.

Autism

Cody was diagnosed with autism during young adulthood, approximately 1999–2001. Greg’s late-1990s diagnosis helped the family recognize the traits they shared, and Cody’s reduced ability and willingness to mask made his own patterns more visible. He greeted the diagnosis with relief: “That explains so much.”

The diagnosis connected his lifelong literalness, intense interests, direct communication, social trust, sensory needs, and effortful masking without reducing him to a list of traits. As he aged, Cody became more comfortable requesting predictable routines and sensory accommodation. He also became more outspoken about autistic adults who had been academically capable, heavily masked, or otherwise missed during childhood.

Relationship to His Body

Cody retained fears shaped by the 1995 crisis: being dismissed, infantilized, treated as intellectually impaired, or denied authorship of his own words. He also feared worsening illness and a return to the hopelessness that had once made waking feel unbearable. His growing confidence did not erase those fears. It gave him more ways to recognize and answer them.

During his 1995 admission, Cody once mouthed “Can I sleep?” as fatigue pulled him under. He was afraid that allowing himself to fall asleep would be interpreted as another attempt to die. Ellen told him, “Of course you can sleep. You can always sleep. You don’t have to ask permission for that.” He fell asleep almost immediately.

Signing was also physically satisfying as well as communicatively useful. Its rhythm, movement, and expressive range allowed Cody to inhabit language with his hands, face, and body in a way the synthesized voice of his early AAC device could not reproduce.

Even after learning to pace, Cody did not instinctively stop early. He had internalized years of instructions to try harder and needed conscious routines that interrupted the push-crash cycle. Andy understood that conflict and helped him treat rest as necessary body knowledge. Their daily check-ins asked what each body could do that day instead of assuming yesterday’s capacity.

Mobility, pacing, and relationship with his body

Cody initially resisted a wheelchair because he could walk, worried about what other people would think, and did not want to become “more disabled.” “I can walk, I don’t need a wheelchair,” he insisted. Ellen and Greg answered, “It’s a tool, not a surrender,” and explained, “You can walk. You also get exhausted walking. The wheelchair lets you do more, not less.” They treated it as another accommodation, like his AAC device: “You can go to the museum if you use the wheelchair. Without it, you’ll be too tired after the parking lot.”

After an outing in 1996 left him in bed for three days, Ellen asked, “You could have enjoyed that if you’d used the chair. Instead you spent three days in bed recovering. Which option actually gave you more freedom?” Walking ability and sustainable community access were separate questions.

Watching Andy use his chair without shame also changed Cody’s understanding. By circa 1996–1997, he used a lightweight, custom-fitted manual wheelchair for restaurants, museums, errands, social events, high-fatigue days, and other outings involving prolonged walking. He could self-propel short distances, but someone often pushed him to conserve energy. He continued walking around the house and for short trips when that cost less effort. Propulsion produced calluses on his hands.

Ellen and Greg researched the options and bought the best custom-fitted manual chair they could afford, treating it as essential medical equipment rather than a temporary convenience. The chair allowed Cody to spend energy on the reason he had gone out rather than using all of it to cross a parking lot. Over time, he became matter-of-fact about mobility equipment and more attentive to delayed post-exertional consequences. By 2033, he used a power wheelchair full-time.

Physical Characteristics

Cody was five feet eight inches tall with a compact, slight frame. At sixteen, he weighed approximately 140 pounds and was smaller and lighter than Andy. His adolescent build was lean, with slender shoulders and a narrow waist, and his face retained some teenage softness. Stress and sleep loss could produce occasional acne. His long, slender fingers were especially suited to signing and typing.

His eyes were very dark brown, nearly black, and almond-shaped, with subtle double eyelids. They were highly expressive when he was alert and could become glazed or distant as exhaustion overtook him. Dark circles were almost always visible beneath them. Cody had an oval face, high cheekbones, a soft jawline, a straight nose with a medium-width bridge, and thin lips that tilted slightly downward at rest. The combination gave his neutral expression a seriousness that could be mistaken for sadness. His resemblance to Greg was strong and became more apparent as he aged.

Cody’s complexion was fair to medium, lighter than Greg’s and darker than Ellen’s. Exhaustion could leave him noticeably paler, making dark circles, visible veins, and bruising stand out. He flushed easily when embarrassed or overheated.

His hair was black and exceptionally silky-straight. At sixteen, he wore it short to medium length for ease of care. By 1997, while health crises displaced the time and energy required for haircuts, it had grown to just above his shoulders. The strands felt smooth and fine under the fingers and slipped out of nearly every hair tie. Andy loved the texture, tucked Cody’s hair behind his ears so it stayed clear of his signing, and braided it when Cody was too tired to manage it himself.

Cody’s hands were pale, with visible veins and long fingers. He kept his nails short to reduce grooming effort. They trembled when he was severely fatigued, and later carried wheelchair-propulsion calluses alongside the fine motor precision of an experienced signer.

Fatigue shaped his posture and movement. His shoulders rounded, his head drooped forward, and he could fold inward while trying to conserve energy. Before he began using a chair, he walked slowly and carefully, with each step visibly costly. Seated mobility reduced some of that strain without erasing the exhaustion. His quiet movement, dark circles, pallor, signing hands, AAC device, and silky hair were all recognizable parts of his physical presence.

Personal Style and Presentation

Cody’s presentation changed with his available energy because bathing, hair care, dressing, and managing equipment all drew from the same limited supply. His adolescent haircut was practical, and its later length reflected periods when basic survival took priority over grooming. On difficult days, his hair could be unwashed or unstyled.

Public work added the practical requirements of a charged and reachable AAC device, wheelchair access, an ASL interpreter, and enough recovery time around the event. Cody did not disguise those preparations to create an appearance of effortless independence.

Tastes and Preferences

Reading was a sustained interest from childhood, followed by writing as Cody gained the tools and confidence to shape his own public narrative. He could become deeply absorbed in academic subjects, especially when the material offered a system to understand or analyze. History became one of the clearest examples during the homeschool cooperative and remained connected to the earliest months of his relationship with Andy.

Habits, Routines, and Daily Life

Mornings were often Cody’s hardest part of the day. He could wake after many hours of sleep feeling as if he had not rested at all. Washing, dressing, eating, and preparing to leave the house could deplete him before the planned activity began. He sometimes fell asleep during breakfast or midway through another ordinary task.

Sleep could overtake him during conversation, homework, meals, films, or games. He could sleep for twelve hours and still wake unrefreshed. Before homeschooling, his body forced rest only after he had pushed through the school day and collapsed at home. The cooperative’s midday rest period made sleep planned and permitted rather than a failure that interrupted the day. In the ICU, after Ellen gave him permission to sleep, he was asleep within thirty seconds and began snoring immediately.

Cody kept his AAC device charged and accessible. He chose a communication method based on energy, speed, company, and environment, and his signing became less precise when he approached a crash. Before outings, he considered the preparation, travel, upright time, sensory and social demands, walking distance, wheelchair use, and recovery the activity would require.

In domestic life with Andy, parallel activity was normal intimacy. They could read, write, work, or rest in the same room without requiring conversation. Silence did not create distance between them; it was one of many ways they made room for each other.

Personal Philosophy or Beliefs

Cody treated a person’s report of pain, fatigue, or danger as meaningful evidence. His own history taught him that medical dismissal was not merely insulting; it could become life-threatening. A diagnosis did not cure chronic illness, but being accurately named and believed could end a different kind of harm.

He rejected speech as a test of intelligence, authorship, or personhood. AAC, ASL, writing, vocalization, gesture, and movement were not lesser approximations of communication. The responsibility to listen did not disappear because the listener had to slow down, learn another language, or relinquish control of the exchange.

Rest was not weakness, wheelchairs were access rather than surrender, and accommodation was a right rather than a reward for appearing sufficiently disabled. Cody similarly rejected inspiration narratives that described ordinary disabled life as overcoming a defective body. He lived with his disabilities, adapted with them, and built a life that included them.

His writing about suicide and PTSD did not romanticize the attempt or cast acquired disability as punishment. The meaning lay in the repeated work of staying, communicating, loving, and exercising agency afterward. That honesty also extended to people he loved; “My Mother the Dragon” criticized Ellen’s failures without erasing her care, advocacy, or capacity to change.

Cody believed disabled people were entitled to intimacy, sex, partnership, marriage, privacy, and adulthood. His relationship with Andy was not evidence that either man had transcended disability. It was a shared life organized around access, interdependence, humor, desire, and the freedom to be ill without apology.

Family and Core Relationships

Greg Matsuda

Main article: Greg Matsuda and Cody Matsuda

Greg recognized his own intelligence, literal trust, and social difficulty in Cody. He did not share Cody’s ME/CFS and could not always understand its bodily cost, but he was protective and committed to finding practical ways for his son to learn and communicate. Helping Cody understand autism contributed to Greg recognizing his own neurology.

After the suicide attempt, Greg promised, “I’m going to make sure his life is better than mine was.” He initially needed Ellen’s help to recognize that Cody and Andy were falling in love, then supported the relationship fully. The all-night phone calls mattered to him because Cody had moved from trying not to wake up to staying connected with someone he did not want to leave. Greg understood that Andy made Cody want to remain alive, and that was everything.

Ellen Matsuda

Main article: Ellen Matsuda and Cody Matsuda

Ellen took Cody from specialist to specialist, argued that his exhaustion was real, and carried enduring guilt after relying on Dr. Sato’s dismissal of his suicidal statement. She helped establish the homeschool cooperative, learned ASL, pursued AAC and medical access, and took joy in Cody’s emerging relationship with Andy. Describing the cooperative, she said, “We let him be autistic and exhausted and nonspeaking without forcing him to perform normalcy.” After discovering one of Cody and Andy’s all-night phone calls, she told Sarah, “Our son is in love and happy and alive. I will pay whatever phone bill it takes for that to continue.”

Her relationship with Cody also exposed a painful contradiction. Ellen fought presumed incompetence professionally, yet Cody’s loss of speech intensified her protective instincts until she sometimes controlled decisions and treated him as if nonspeaking meant incapable. Cody addressed that harm directly in “My Mother the Dragon.” Ellen eventually recognized the pattern and worked to return decision-making and trust to him. Their repair did not erase what happened; it made accountability part of the relationship.

Susie Matsuda

Main article: Susie Matsuda and Cody Matsuda

Susie and Cody had a gentle, supportive bond. She was preparing to leave for Stanford and pre-medical study during the same year his illness and crisis consumed the family. She learned ASL with the rest of the household and remained connected to Cody as her own education moved toward the disability-competent medical practice their family had needed.

Patricia Matsuda

Main article: Patricia Matsuda and Cody Matsuda

Pattie loved Cody fiercely and protected him physically from students who exploited his trust. Before she understood chronic illness, that protection coexisted with frustration. “Why are you always sleeping? Just TRY harder!” she demanded, unable to reconcile his intelligence with his inability to fight or remain awake.

Their roles reversed in spring 1998. After Pattie punched Clarissa Smalls amid escalating pregnancy rumors and an unsafe school environment, Cody used his AAC device to make a methodical case for homeschooling and the CHSPE. He offered to tutor her and used his own history to insist that leaving a destructive school system could be survival rather than failure.

Joey Matsuda

Main article: Cody Matsuda and Joey Matsuda

Joey adored Cody and wanted the attention of the older brother he considered brilliant. As a child, he could not understand why Cody slept instead of playing with him and asked, “Why don’t you want to play with me?” Cody knew the question came from hurt rather than cruelty, but still carried guilt about what his body could not give.

After Cody became nonspeaking, Joey learned ASL with the speed and directness of a child who regarded signing as another ordinary way to talk. The relationship matured as Joey came to understand Cody’s exhaustion as disability rather than choice and eventually channeled the family’s protective instincts into disability-rights law.

Heather Moore

Main article: Heather Moore and Cody Matsuda

Heather was part of Cody’s life from childhood. She used a wheelchair and lived with cerebral palsy, epilepsy, autism, pain, spasms, and a motor-speech difference without intellectual disability. During her first visit after Cody’s 1995 crisis, she held him while he cried, asked to hear his AAC device, and told him, “Communication matters. However you do it.” Her attention centered what Cody could say rather than mourning the form he had lost.

Heather also recognized his relationship with Andy before the couple announced it at dinner. She welcomed Andy through a direct conversation about their shared experiences of cerebral palsy, epilepsy, wheelchair use, pain, and other people’s assumptions.

Romantic and Significant Relationships

Andy Davis

Main article: Andy Davis and Cody Matsuda

Cody and Andy first met in middle school, and Cody knew Sarah and Marcus well by 1995. He was sixteen and Andy was seventeen when they became close at Pasadena High School that year. Their friendship made room for quiet lunches, cancelled plans, falling asleep during video games, and being exhausted without needing to explain or apologize. Both were academically capable disabled students whose pain, fatigue, communication, and intelligence were routinely misread.

Andy learned about Cody’s suicide attempt at school and experienced a panic attack, vomiting, severe spasms, and several seizures during the following week. He visited Cody at County General after Cody woke. Andy told him that he understood the fatigue and disbelief and promised that they could be tired together rather than perform wellness for each other.

Across their relationship, Andy read Cody’s facial expressions, movement, and vocalizations with extraordinary accuracy. Cody, in turn, could sometimes identify an approaching spasm before Andy recognized it himself. Their care for each other depended on that knowledge without treating either partner as the other’s sole caregiver.

Andy learned ASL with the Matsuda family. As Cody recovered, the boys spent hours on the landline using speech, AAC, signs when they were together, vocalizations, breathing, and silence. During a history-homework call, Andy confused Christmas and Thanksgiving and said George Washington crossed the Delaware on Jesus’s birthday. Cody laughed fully for the first time since his injury. Andy promised to make him laugh that way again, then said, “I love you.” Cody answered “LOVE YOU TOO” through AAC, and they returned to the Revolutionary War.

They sometimes fell asleep without hanging up and remained connected for eleven or twelve hours. Sarah and Ellen each found one boy asleep with the telephone still open and called one another, delighted. Marcus’s teasing prompted Andy and Cody to ask directly whether they were boyfriends. They began dating in summer 1995.

Their first kiss occurred during one of Andy’s severe spasm episodes. Andy was apologizing for his body and insisting that he had ruined their time together. Cody stopped the apology by holding his face and kissing him, then signed that Andy’s body was not something he needed to apologize for. It was a first kiss for both of them.

Cody moved into the Davis family home in summer 1997 while Andy’s seizures, pain, spasticity, and untreated sleep apnea were especially severe. Andy’s childhood room became their shared room, with a lavender diffuser, Cody’s AAC charging station, two wheelchairs, and books throughout the space. They became engaged circa 2002–2003, moved into an accessible apartment circa 2005–2006, and married in 2013 when California again permitted same-sex marriage.

By 2033, both men used power wheelchairs and worked with support staff. Their care teams protected the marriage from requiring either partner to become the other’s sole caregiver. Daily life included body check-ins, medication and equipment routines, shared reading and writing, humor, touch, parallel rest, and a communication vocabulary built across decades.

Personal Life

Residences and domestic life

Cody lived in the Matsuda family home through 1997, then in the Davis family home from summer 1997 into the early 2000s. He and Andy later shared an accessible Pasadena-area apartment before and after their marriage.

Their home was organized around two disabled adults rather than around one patient and one caregiver. Equipment, medication, charging, rest, food, work, and assistance were ordinary domestic infrastructure. Each man knew the other’s warning signs and could offer practical help, but outside support preserved room for them to remain husbands rather than treating mutual love as an unlimited care resource.

Social and public life

Cody’s public appearances required pacing before and after travel, wheelchair and venue access, reliable AAC, interpreters, and permission to stop when his energy was gone. He did not regard those conditions as unfortunate exceptions to the real work; they were what made the work possible.

In private, he valued relationships that did not demand performance. Family, Andy, and trusted friends learned that cancelled plans, mid-conversation sleep, silence, or a different communication method did not signal indifference. Being allowed to exist without disguising exhaustion was one of Cody’s most enduring measures of safety.

Memorable Quotes

“I don’t want to wake up tomorrow.” (To Dr. Sato during the spring 1995 crisis.)

“Can I sleep?” (Mouthed to Ellen while falling asleep in the intensive care unit.)

“That explains so much.” (On receiving his autism diagnosis as a young adult.)

“LOVE YOU TOO.” (Through AAC during a history-homework call with Andy in summer 1995.)

“I can walk, I don’t need a wheelchair.” (During his initial resistance to using a wheelchair for energy conservation.)

“We were always here. You weren’t listening.” (A signature statement from his work on nonspeaking people and invisible illness.)

“The diagnosis doesn’t cure you. But it validates you. It says: This is real.” (On the relief of having chronic illness accurately named.)

“Losing speech doesn’t mean losing voice.” (A foundational statement from Voices Beyond Speech.)

Characters Supporting Characters Living Characters Authors Japanese-American Characters White Characters Mixed Race Characters Mixed Heritage Characters Disabled Characters Mobility Disabilities Wheelchair Users Invisible Disabilities Chronic Illness Characters Neurodivergent Characters Autistic Characters ASL Users LGBTQ+ Characters Matsuda Family