Key Takeaways
1. Embracing Progressive Sensory Loss: A Journey from Denial to Acceptance
Although the world is full of suffering, it is full also of the overcoming of it.
Early signs ignored. Rebecca Alexander's childhood was marked by subtle signs of sensory loss, initially dismissed as clumsiness or daydreaming. Diagnosed with Retinitis Pigmentosa (RP) at 12, a progressive eye disorder, and later with Usher Syndrome Type III at 19—a genetic condition causing simultaneous vision and hearing loss—she initially coped through denial, unable to fathom a future without sight or sound. This early period of ignorance, however, allowed her to develop a sense of self not defined by disability.
A shocking diagnosis. At 19, a doctor's blunt diagnosis of progressive blindness and deafness, with an uncertain timeline, shattered her denial. The words "blinddeaf blinddeaf blinddeaf" pounded in her head, drowning out even the constant ringing (tinnitus) she experienced. Despite the overwhelming news, she maintained composure, determined to hide her struggles and compensate for her diminishing senses, fearing pity and the loss of her "normal" life.
The slow creep of loss. Usher Syndrome Type III, the least severe form, meant a slow, subtle onset of symptoms, making it harder to grasp the full extent of her condition in youth. Her vision, once 180 degrees, is now less than ten, described as "donut vision" where the blind ring expands daily. This gradual erosion of her senses forced a reckoning with reality, pushing her towards eventual acceptance and a profound appreciation for every remaining moment of sight and sound.
2. The Transformative Power of Adversity: Forging Resilience Through Catastrophe
The perseverance I would need every day of my life really began in that bed, with that little ball.
A life-altering fall. The summer after high school, a drunken fall from a 27-foot window left Rebecca with multiple broken bones, including a shattered foot and hand, and a fractured spine. This catastrophic accident, a combination of intoxication and degraded night vision, rendered her completely incapacitated and dependent on others, forcing her to confront her vulnerability in a way her progressive sensory loss hadn't yet.
The crucible of recovery. Confined to a hospital bed, unable to move, Rebecca's recovery became a grueling test of perseverance. Her first task—blowing a Ping-Pong ball in a tube to maintain lung function—became a symbol of her determination. This period taught her the crucial lesson of meeting challenges head-on, one day, one hour, one minute at a time, laying the foundation for her future resilience.
Rebuilding body and spirit. The long, painful rehabilitation, from wheelchair to crutches to walking cast, instilled a deep appreciation for her body's strength and the connection between mind and physical well-being. This experience, though agonizing, transformed her perspective, making her realize the preciousness of her working parts and preparing her for the ongoing battle against her sensory decline.
3. Advocacy and Community: Finding Strength and Voice in Support Systems
I had no idea just how many rights I was legally entitled to until she explained it to me, and made it clear that I wasn’t a nuisance in asking for help.
A champion at Michigan. At the University of Michigan, Rebecca found an extraordinary advocate in Joni Smith, director of Deaf and Hard of Hearing Services. Joni, whose grandparents were deaf, taught Rebecca the importance of self-advocacy and that asking for help was a right, not a burden. This mentorship empowered Rebecca to demand accommodations and navigate the academic world with confidence.
Learning a new language. Joni encouraged Rebecca to learn sign language, a skill that would become invaluable. Michigan's first sign language course opened a new world of communication and connection. Sign language, a robust and expressive visual language, offered a directness and intimacy that transcended the limitations of her diminishing hearing.
Integrating into the deaf community. Becoming part of the deaf community was a conscious effort, requiring willingness to engage fully. This community, which often doesn't view deafness as a disability, provided a space where Rebecca felt understood and unjudged. It taught her the value of being fully present in communication, a skill that would later enhance her psychotherapy practice.
4. Finding Purpose in Helping Others: Turning Personal Struggles into Empathy
I realized that this was the work that I wanted to do. I wanted to listen to people’s stories, and, ultimately, to help them figure out how to rise up from their difficulties and how to recognize and change patterns that weren’t working in their lives.
Giving back as a core value. Instilled by her father's example of "tzedakah" (justice through charity), Rebecca found profound purpose in helping others. Early volunteering with Project Open Hand, delivering meals to people with HIV/AIDS, taught her the tangible impact of service and the pleasure of making a difference. This commitment earned her recognition as an Olympic torchbearer.
Lessons from prison. During graduate school, teaching a health class to women in prison profoundly shifted her perspective. She realized these women, often from disadvantaged backgrounds, primarily needed to be heard, not lectured. This experience highlighted the crucial impact of childhood and family circumstances, making her appreciate her own loving, if imperfect, upbringing.
A career in psychotherapy. This realization solidified her desire to become a psychotherapist, specializing initially in eating disorders—a struggle she intimately understood. Her own journey through body image issues and the accident taught her that external perfection often masks internal powerlessness. Her unique experiences allowed her to connect deeply with patients, offering a space for genuine listening and guidance.
5. The Intimacy of Connection: The Profound Role of Touch, Friendship, and Family
Nobody can survive without being touched.
Touch as a lifeline. With diminishing sight and hearing, Rebecca's sense of touch became paramount, grounding her and connecting her to the world. From the simple pleasure of a warm bath to the affectionate hands of a loved one, touch became an imperative for communication and comfort. She observed in her practice how vital physical connection is for human well-being.
Unwavering friendships. Her closest friends, like Lisa, who visited her tirelessly after her accident, and Caroline, who learned tactile sign language, became indispensable. Caroline, in particular, became her "Annie Sullivan," providing practical support—from finding lost items to cleaning up broken glass—and emotional companionship, demonstrating the profound depth of chosen family.
Tactile signing: a new language of intimacy. Tactile sign, a language for the deaf and blind, became a unique way for Rebecca and Caroline to "whisper" secrets. This intimate form of communication, requiring close physical contact and total concentration, forged an unbreakable bond, ensuring Rebecca would never be truly alone in her silent, dark world.
6. Navigating Relationships with Disability: Honesty, Vulnerability, and Unconditional Love
How could someone try to imagine a future with a woman who would someday be deaf and blind?
Dating in a sensory-diminished world. Dating presented unique challenges, forcing Rebecca to confront her insecurities about her disabilities. The fear of rejection due to her future blindness and deafness was constant, leading her to initially hide her condition. She grappled with the dilemma of when and how to reveal her truth, knowing that a Google search would quickly expose her story.
Alan: a love that transformed into an enduring friendship. Her relationship with Alan, her first true love, taught her the power of unconditional acceptance. He embraced her disabilities, researching Usher Syndrome and becoming her fierce advocate. Though their romantic relationship ended, their bond evolved into an extraordinary friendship, setting a high bar for future partners and demonstrating that love can transcend conventional expectations.
Embracing vulnerability. A pivotal moment came when she decided to update her online dating profile to include her hearing aids. This act of honesty, though scary, was a step towards self-acceptance and a refusal to hide. She learned that while some might be deterred, the right person would love her for who she is, "baggage" and all, echoing her mother's unwavering belief in her worth.
7. The Gift of Silence and Heightened Senses: Appreciating What Remains
Silence would be the name of my religion.
A changing relationship with sound. Once comfortable with noise, Rebecca's progressive hearing loss transformed her relationship with sound. Tinnitus, auditory hallucinations (like midnight jackhammers or screams), and the overwhelming cacophony of New York City made silence a cherished refuge. Taking out her hearing aids became a "gift," allowing her to focus, relax, and sleep soundly.
Amplified remaining senses. The loss of hearing and vision amplified her other senses. Food became a tactile and flavorful delight, with her sense of taste and smell becoming incredibly powerful. She learned to savor textures and flavors, often eating with her eyes closed to heighten the experience, demonstrating how the body adapts and finds new ways to experience joy.
The profound value of silence. Silence, once feared, became a "blessing." It allowed her to be truly present, attuned to her thoughts and physical sensations, free from constant distractions. In a world bombarded by noise, she found a unique path to self-connection and peace, a privilege many seek through expensive retreats.
8. Challenging Perceptions of Disability: Redefining Strength and Independence
People often tell me that I don’t look like a “disabled person.”
The invisible disability. Rebecca frequently encountered the misconception that she didn't "look disabled," highlighting society's narrow view of what disability entails. This forced her to constantly explain her condition, from her hearing aids to her cane, challenging preconceived notions and the exhausting effort of trying to appear "normal."
The cane: a symbol of independence. The white cane, initially dreaded as a public declaration of blindness, became an indispensable tool for safety and independence, especially at night. While it drew attention, it also facilitated navigation and, surprisingly, elicited helpful responses from strangers. This acceptance of assistance, once difficult, became a crucial part of her adaptation.
Redefining strength. Her physical resilience, honed by her accident and rigorous spin classes, allowed her to push her body's limits. She found freedom in activities like spin, where her disabilities didn't hinder her performance, and she could motivate others to overcome their own perceived limitations. This active lifestyle, despite adversity, became a testament to her unwavering spirit and a source of profound self-worth.
9. The Complexities of Family Love: Supporting a Twin Through Mental Illness
Daniel dodged my genetic bullet, but I dodged a bigger one. I’m not the one that my parents’ hearts break over. I’m the lucky one.
Daniel's struggle with mental illness. Rebecca's twin brother, Daniel, faced his own devastating battle with bipolar disorder, a condition that ran in their family. His illness manifested in escalating mania, grandiose delusions, and periods of deep depression, profoundly impacting his life and causing immense pain to their family. This contrasted sharply with Rebecca's physical disabilities, yet both were rooted in genetics.
A different kind of disability. Rebecca recognized the irony: while her physical disabilities were visible and often met with support, Daniel's mental illness was isolating and misunderstood. She felt a deep, protective connection to her twin, who, despite his struggles, constantly expressed a desire to care for her. She acknowledged that his fight to reclaim his brilliant mind was, in many ways, harder than her own.
Unconditional twin bond. Despite the heartbreak and frustration, their twin bond remained impenetrable. Rebecca's presence offered Daniel comfort, and she often slept beside him, keeping her hearing aids in to hear his cries. This shared vulnerability, though different in manifestation, underscored the enduring power of their connection and the profound impact of family love in the face of life's most challenging circumstances.
10. The Bionic Ear: A New Frontier of Hearing and Its Realities
I was so tired of trying to keep up with everyone and live my life like everybody else, as though I was fully hearing and sighted.
Qualifying for an implant. After years of being told she wasn't a candidate, Rebecca finally qualified for a cochlear implant, a surgically implanted electronic device designed to restore some hearing. This news, while exciting to her family and friends, brought a mix of terror and apprehension for Rebecca, who feared losing her remaining natural hearing and adapting to a completely new, digitized sound.
The reality of bionic hearing. The "activation" of the implant was a shocking experience; sounds were high-pitched, monotone, and robotic, making voices sound like "cackling devils." This initial disorientation was far from the miraculous "hearing" depicted in viral videos. It required immense effort, listening therapy, and patience to discriminate words and make sense of the new auditory landscape.
A conscious choice for quality of life. Despite the challenges and the loss of authentic sound, Rebecca chose the implant as a means to improve her quality of life and maintain her independence, particularly in her psychotherapy practice. It was a decision to move forward, to embrace a "bionic ear" that, while imperfect, offered the promise of better communication and a richer engagement with the world.
11. Choosing Joy and Presence: A Conscious Decision to Live Fully Despite Loss
I appreciate what I have, because I have less today than I had yesterday, and more than I will tomorrow.
Living in the moment. Rebecca's journey instilled in her a profound understanding of living in the moment. She consciously chooses to appreciate every day, every minute, savoring simple pleasures like blooming trees or people's faces, knowing these experiences are fleeting. This perspective, born from accelerated loss, serves as a powerful reminder of life's impermanence for all.
Gratitude as a practice. Despite the immense challenges, Rebecca maintains an optimistic outlook, a conscious choice that requires daily effort. She allows herself to feel sadness and fear, acknowledging her losses, but then actively shifts to gratitude for what she still possesses: her dog Olive, tactile signing with Caroline, her physical strength, and the unwavering love of her family and friends.
Embracing the future with hope. Looking ahead, Rebecca desires a partner and children, acknowledging the unique challenges this presents with her disabilities. She refuses to "settle" or view herself as "damaged goods," believing that true happiness comes from taking chances and opening oneself to love. Her life is a testament to finding fulfillment and joy, not despite, but often because of the adversity she has faced.
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