From Silence to Story: A Stroke Survivor's Journey

August 2020 marked a pivotal moment in my life. I suffered a life-changing stroke that turned my world upside down. At that time, I was overseeing digital marketing and e-commerce for Singapore's largest electronics and home company. The immediate aftermath of the stroke was a profound emotional and physical upheaval. I struggled with basic tasks and felt a deep sense of loss and frustration over my inability to communicate as I once had. The loss of independence, even in simple activities like using the toilet or showering, was overwhelming. This frustration often boiled over into anger, leading me to lash out at those around me.

The stroke left me grappling with a whirlwind of physical and cognitive challenges. Initially, everything seemed blurry and silent. Communication, which had once come effortlessly, became an insurmountable hurdle. It was through my speech therapist that I learned about aphasia—a disorder that disrupts language production and comprehension. I first encountered this when I struggled to form coherent words and sentences, turning simple conversations into painful ordeals and leaving me feeling isolated and misunderstood.

Aphasia, combined with a severe stammer, added another layer of difficulty to my life. My ability to name objects and my working memory were significantly affected. Expressing thoughts became a constant battle. As someone who had once been an eloquent speaker, my confidence in speaking diminished drastically, confining my communication to close friends, family, and healthcare professionals.

Singaporean culture, while emphasizing familial bonds and support, also promotes self-reliance and individual responsibility. This balance between communal support and personal initiative is deeply ingrained in Singaporean society. In my case, while my family and friends were incredibly supportive, the cultural emphasis on self-reliance encouraged me to take ownership of my recovery.

Despite the challenges I faced, I was determined to regain my independence. This determination was fueled by the cultural expectation that individuals should strive for self-sufficiency. Even as I relied on my family and friends for support, I felt a personal responsibility to actively participate in my recovery. The befrienders from Singapore National Stroke Association, Jane, Atika, and stroke survivor Maya, provided invaluable support while also encouraging me to take initiative in my rehabilitation. Their guidance and encouragement helped me balance the need for assistance with the desire for self-determination.

Driven by a profound need to express myself and share my story, I turned to writing as a therapeutic outlet. Although returning to work was not feasible, writing became my lifeline. My debut book, A Cry in the Dark, is a heartfelt account of my journey through pain, hope, and resilience. The process of writing, though fraught with challenges, helped me reconnect with my thoughts and emotions. Each word became a small victory. The recognition from the book’s launch eventually led to an invitation to speak at the World Stroke Congress 2022 in Singapore, where I shared insights on the role of health professionals in recovery. Through writing, I found a way to regain control, transform frustration into resilience, and make sense of my trauma.

Writing with aphasia is a meticulous and deliberate process. My approach includes:

• Working in a quiet, distraction-free environment to enhance concentration.
• Maintaining a consistent writing schedule during peak alertness.
• Employing technology such as speech-to-text apps and grammar-checking tools.
• Recording and transcribing thoughts in my notebook, and handwriting some of these into quotes for inclusion in the book.
• Applying techniques from my speech therapist, like chunking information and using visual aids.
• Collaborating with a trusted editor to oversee my writing.

Adapting to my new reality has required me to accept my limitations and seek help when needed. Previously, I believed I could manage everything independently. Now, I appreciate the value of support and am grateful for those around me. This acceptance has been vital in navigating my writing journey and overcoming communication challenges.

Although I lacked formal art training before my stroke, art had always been a passion. After the stroke, art became crucial to my recovery, offering a way to express emotions that words couldn't capture. Initially, I wanted to hire a well-known illustrator for my book but was encouraged by Dr. Moses Koh to create the illustrations myself. This challenge boosted my self-confidence and added authenticity to my work. Despite having no prior artistic skills, I discovered a latent talent through this process. Art became a visual language bridging my inner world with the external one. Combining writing with art enriched my creative process, allowing me to tell stories in a multi-dimensional way.

Illustrating has been liberating and transformative. It enables me to convey emotions and ideas that are difficult to express verbally due to aphasia. Each drawing reflects my inner world, offering a new voice and a deeper connection with others. The process of creating art has helped me navigate and understand my emotions, providing clarity and release. Sharing these illustrations has facilitated meaningful connections and offered insights into my experiences that words alone might not convey.

Combining writing and art has enriched my creative process by creating a more dynamic form of expression. This integration allows me to convey greater depth and emotion. Each image complements and enhances the text, resulting in a more immersive storytelling experience. My illustrated novel, merging my passions for writing and art, reflects my experiences post-stroke and ongoing recovery. It serves as a dialogue with my inner self, exploring the complexities of my emotions and thoughts during this period. By presenting it as a graphic novel, I aim to reach a broader audience, including those drawn to visual storytelling.

Aphasia continues to impact my daily life, presenting communication challenges and moments of frustration. These difficulties can be disheartening, but I’ve learned to adapt and find alternative ways to communicate. Evelyn, founder of Aphasia SG, often reminds me to "use it or lose it," a principle that motivates me to stay active and engaged.

Community organisations like SNSA and Aphasia SG play a crucial role in providing culturally relevant support by leveraging their extensive experience, dedicated staff, volunteers, and befriending pool. These organisations have developed tailored programmes that address the unique cultural, linguistic, and social needs of the Singaporean community. For example, SNSA has curated bespoke befriending training in collaboration with healthcare professionals that trains volunteers to understand the impact of stroke and how to communicate with stroke survivors of varying abilities, including those with communication deficits. SNSA also organises special events on festive occasions, and Aphasia SG runs online chit-chat sessions in both English and Mandarin for patients with aphasia. Their deep understanding of the community allows them to connect with individuals on a personal level.

For others on a similar journey, my advice is to remain patient and persistent. Recovery is gradual, and progress can be slow. Embrace your support network, seek professional help, and find ways to express yourself creatively. Surround yourself with understanding people who can provide encouragement and assistance. Remember that each small step forward is a victory, and resilience and adaptability are key to navigating the challenges of aphasia.

Living with aphasia and recovering from a stroke is an ongoing journey filled with challenges and triumphs. Through writing, art, and sheer determination, I have discovered new ways to communicate and express myself. My hope is that my story inspires others to find their voice and embrace their own unique journey. Strokes can strike anyone unexpectedly, regardless of age or health. Through my books and public speaking, I aim to raise awareness, provide hope, and support others on their path to recovery.

For World Stroke Day 2024, I hope to share a message of resilience and the transformative power of creativity in overcoming adversity. As a stroke survivor, I strive to embody resilience and hope. This year’s theme, "Greater Than Stroke," highlights our collective strength. Just as athletes rely on their teams to overcome obstacles, stroke recovery depends on a supportive network. My journey has been supported by a dedicated care team, family, the Singapore National Stroke Association, and Aphasia SG. Together, we have faced challenges with determination. I urge everyone to recognise stroke signs and act swiftly—because united, we can be #GreaterThanStroke and work towards a world free from its impact.

Terence’s book, The Boy And The Man, can be purchased here.

Find out more about Singapore National Stroke Association here.

Find out more about Aphasia SG’s work here.