By Amber Kaiser

Recently, I connected with Laura Torres Caro who lives in Andalucia, Spain. We met on LinkedIn when I posted my article about conquering epilepsy stigmas and she reached out to me to share her experience with Traumatic Brain Injury (TBI) and memory loss after an accident when she was younger and how she later developed epilepsy from head injury, which can be a long term side-effect from TBI. Like many people who’ve experienced TBI whether from injury, brain surgery or an accident, her experience has been difficult with adapting to how her brain changed after the TBI and later developing Acquired Brain Injury (ABI). It also took a long time before she was finally diagnosed with epilepsy in 2022 and she said Spain doesn’t have epilepsy support like the U.S. does. She shares her story here in the hopes to provide support and help others from going through a similar experience.

When I was 17, I got in a traffic accident with my motorbike

I lost consciousness and was in a coma for almost a month after the accident. My family and friends were my support system and after I woke from the coma, I started seeing a neurologist regularly. I lost all my memory (similar to amnesia from head injury) and felt like I was experiencing life like I was 7 years old again. Life was so different for me I felt like I was born again at 17. Despite the challenges, thanks to my willpower, I recovered within a year and was able to pass my higher education courses and continue studies, eventually getting an English teaching degree to help others.

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In 2021, it was discovered that my TBI was evolving into the onset of ABI

In 2021, a staggering 18 years after my TBI in 2006, I began to notice the emergence of mild symptoms. These included a notable absence of dreams for three consecutive months, persistent disruptions in my sleep with frequent awakenings, alarming instances of memory loss (such as forgetting my own phone number), and an increased sensitivity to external noise, which often left me feeling overwhelmed.

Concerned about these developments, I sought counsel from the surgeon who had overseen my care during the coma. After a thorough analysis of my recent medical tests, including an EEG, it became apparent that my brain injury was likely evolving, leading to the onset of ABI. This diagnosis shed light on the underlying cause of my escalating symptoms and underscored the need for continued monitoring and intervention to manage the progression of my condition.

Everything changed in 2022 when I started experiencing seizures

While I was studying and living life, everything changed in 2022 when I started experiencing what I refer to as seizures. I started feeling more tired every day, had to sleep longer and noticed more problems with my memory. I also experienced déjà vu feelings several times a week (which are often referred to as simple partial seizures or focal seizures). I also had lapses of consciousness. For example, I was walking down the street, talking normally in a fluent conversation, but I became unconscious. I did not remember the crisis afterward. Other times, I feel dizzy, start sweating and lose my balance during the crisis.

All these symptoms were like a warning that something was happening in my brain

I started to have a lot of medical tests done in 2022 that perhaps revealed the presence of a type of epilepsy, but I was not 100% sure because each doctor changed their perspectives depending on the crisis and medical test.

Despite experiencing several crises and being uncertain about an epilepsy diagnosis in 2022, I achieved something incredibly positive. I secured a position in the doctoral program at the University of Malaga (UMA) in Spain, the city where I live. And, at the end of 2023, I received all 260 copies of my first autobiographical novel, translated here in English, The Girl from the Mental Stop: Do Not Miss the Train. During my last experience in King Alfred's Academy, where I taught special needs students, I thought about writing my own story to help others.

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The narrative unfolds around a girl, straddling the realms of adolescence and womanhood, grappling with the challenges of illness following a TBI. Adrift in solitude, she confronts the loss of her identity. Amidst the isolating sense of aloneness and symptoms, a peculiar recognition emerges, stemming from the absence of a precise diagnosis. Unbeknownst to her, there exists someone privy to facets of her being that even she remains ignorant of. The connection between them mirrors the resonance of two soul mates reflecting in tandem. As the story progresses, one is left pondering the upcoming train stop–a pivotal moment that could either conceal or reveal her truth.

This all coincided with receiving the unfortunate news from my last medical test which led me to reflect on the idea that even in the midst of negative moments, there can be silver linings or valuable lessons to be gained.

Adapting to living with epilepsy and the invisible struggles of ABI

The initial year was marked by considerable hardship. My only companions through this challenging period were my partner, the father of my child, and my own son as witnesses, who on some occasions were even surprised with my weird crises. Their steadfast support was particularly vital because my family, especially my maternal relatives, were grappling with the loss of my grandfather to frontotemporal dementia in 2022. Amidst the grief and sorrow that permeated our lives, I found myself unable to confide in them about my own struggles. Adding to the complexity, medical examinations revealed that I had also sustained a left frontotemporal brain injury, further complicating my ability to navigate and articulate my experiences.

Being both a patient and a researcher while getting my PhD has been challenging. However, thanks to my willpower, after all my confusion of symptoms, I started having more medical tests again and saw multiple doctors when I was finally diagnosed with focal epilepsy.

I still feel my challenges are “invisible” to the rest of the world because the challenges of living with an invisible illness, crisis and the result of cognitive differences can be difficult, but it’s important to foster understanding. While I may appear perfectly fine on the outside, it's crucial to understand that I grapple with an invisible illness that affects my cognitive abilities, like other people feel. This condition, although it is not visible to the casual observer, is significant to the challenges in my daily life. My struggles are internal, impacting the way I think, process information, and engage with the world. This is where I analyze the concept of self-image and understanding, just because my challenges aren't visible, doesn't mean they're any less real or impactful.

For example, imagine for a moment a woman walking down the street. Her appearance might deceive the onlooker as she seems ghostly, with a loss of balance, and dizziness. It's at this point that observers might assume she's grappling with cervical issues, or perhaps, presume she's under the influence of alcohol. Rarely do people consider that the root of her struggles might lie within her brain because she had lapses of consciousness or dizziness.

Experiencing different sensations in public

In 2023, during my interactions with co-workers, I occasionally found myself struggling to fully engage in conversations due to moments of internal conflict, experiencing mental blocks or crises of conscience. Almost invariably, this phenomenon occurs particularly during extended conversations involving a multitude of individuals.

Another, unusual circumstance I've encountered involves moments during conversations where, unexpectedly, I experience an abrupt surge of heat coursing from head to toe, accompanied by persistent dizziness. This sensation renders me unable to fully grasp or participate in the ongoing conversation. During certain crises, I notice an overwhelming and increasingly intense smell that doesn't seem to have a real source. It becomes so strong and unpleasant with each passing second, almost as if it's not grounded in reality. There are more crises and brain injuries that I will share in my second novel, The Girl of the Mental Stop II: Do Not Miss the Train which I plan to start writing this summer of 2024.

Continuing her academic journey

First and foremost, I want to highlight the significance of my academic journey, which has paved the way for me to stand before you today. My neurosurgeon once remarked:

"Another woman with your brain injury would have been entirely incapacitated, but thanks to your remarkable willpower, you managed to reclaim your brain and mind."

Following my recovery from the accident, I continued my education, earning a master's degree in bilingual teaching. I also delved into the field of tourism, driven by my desire to live in the UK for language practice and cultural immersion. This aspiration led me to Scotland, where I spent four years working in preschools and hotels, and later to England, where I gained further teaching experience in secondary schools from 2011-2017.

And perhaps the most empowering aspect of my journey is the unwavering support from both directors of my doctoral program since 2022. They have generously granted me the opportunity to anchor my thesis in the narrative of my own novels. This remarkable privilege enables me to contribute meaningfully to the understanding and treatment of brain disorders and psychological challenges encountered in everyday life. Through this endeavor, I aspire to offer insights and solutions that may benefit others grappling with similar afflictions, fostering a sense of hope and resilience in the face of adversity.

Advice for someone being diagnosed with epilepsy

Never think you are alone because we can be together and support each other when we reach out. Here are some epilepsy care tips:

• Always, work closely with your healthcare team, including neurologists and epilepsy specialists, to develop a personalized treatment plan.
• Take notes of all the symptoms or seizures daily in order to tell the doctor about any concerns or if you want to change your medications.
• Maintain a healthy lifestyle with regular sleep, a balanced diet, and regular exercise. Try to manage stress.
• Educate yourself and others: Learn about epilepsy to better understand your condition. Educate friends, family, and colleagues about epilepsy to foster a supportive environment. 
• Keeping some of your real friends informed about your illness, especially during moments of crisis, can be helpful.
• Join Support Groups: Consider joining local or online support groups for individuals with epilepsy. Connecting with others who share similar experiences can provide valuable insights and emotional support.

How to navigate the challenges of living with epilepsy and an invisible illness like ABI in everyday life

In the school environment where I currently work, I find myself navigating the challenges of living with invisible illnesses. There are instances where I feel compelled to ask questions more frequently to ensure clarity, particularly given the aftermath of my TBI, as well as my ABI afterwards.

However, the response from my colleagues and teachers has not always been as understanding and accommodating as I had hoped, leading me to feel like an "unknown woman with invisible illnesses.” Early on, I took the initiative to communicate with the managerial team, including the manager, director, and coordinator about my circumstances. I thought that by sharing this information, they would gain insight into the potential challenges I might face, especially concerning memory issues resulting from my accident. Despite this effort, it seems that there's a lack of awareness or acknowledgment of the invisible struggles I contend with daily.

There's a prevalent misconception that if you don't exhibit obvious signs of a disability, others may assume you have no underlying issues. Perhaps what's missing is a clear signal to colleagues and peers, a sort of "advert" or notice that says, "I have brain injury lesions, recently developed epilepsy, and may need to ask questions or require some assistance. Your understanding and support are appreciated.” Naturally, it is tough to have these kinds of conversations with people in public.

In the realm of friendships, I constantly find myself striving to build connections with others. However, the journey is marked by the challenges posed by my short memory and the occasional bouts of dizziness and crises (or seizures). I also find it difficult to keep friends because I don't remember the names.

These health issues often lead me to contemplate sharing my struggles with those I'm attempting to forge friendships with. Unfortunately, it has become a recurring pattern that after revealing these personal challenges, some individuals seem to distance themselves, and our interactions wane. This phenomenon raises the question: Could it be that my health conditions are causing me to withdraw from the friendship?

Sharing our lives on social media

I find myself grappling with a sense of limited support and visibility on social networks. Despite my efforts to create engaging and thoughtful posts, it often feels like my content goes unnoticed or is overlooked by others. In my attempts to share more about myself, including the challenges posed by my illnesses, I aim to convey the need for support and help to others.

The disconnect between my intentions and the response on social media can be disheartening. It seems that even when I try to subtly highlight my health struggles and the support I require, the level of engagement or acknowledgment falls short of my expectations. This disparity prompts me to reflect on the dynamics of online interactions and the complexities of conveying personal struggles in a virtual space. It raises questions about the visibility of individuals dealing with health issues within the vast landscape of social networks, where attention can be fleeting, and meaningful connections may be challenging to establish.

Navigating being a patient, researcher and writer of your own illness

I believe there's a crucial aspect that may not always be fully acknowledged: the fact that a patient, such as myself, can also engage in the arduous journey of being both a researcher and writer about her own symptoms. It's a pursuit not driven by a desire for personal fame, but rather a genuine commitment to aiding others in having their illnesses. It is worth noting that not everyone may readily appreciate the capacity of a patient to don the roles of a researcher and writer. The effort involved in unraveling the complexities of one's own symptoms, delving into medical literature, and conveying personal experiences is a labor of love with a broader purpose—to serve as a beacon for those who might be grappling with similar health challenges.

My motivation to share these insights is rooted in my earnest desire to assist others, to potentially offer solace and guidance to those who may be navigating the early stages of illness. By shedding light on my own journey and the lessons learned, my hope is to contribute to the early detection of symptoms for others, sparing them from the challenges that come with delayed recognition and diagnosis.

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