Epilepsy Day: Shining A Light On A World We Navigate With Love

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Today, March 26th, is Epilepsy Day – a day dedicated to raising awareness and understanding about epilepsy, a neurological condition that affects millions worldwide. For me, it's a day that filled with the daily reality of loving and caring for my incredible 20-year-old daughter, Muji.

Muji is a bright light in our lives. She also lives with cerebral palsy, complex disabilities, and epilepsy. This combination presents a unique set of challenges, but it also light up the strength, resilience, and soul that defines her.

Epilepsy, for us, isn't just a regular experience; it's an ever-present condition in our daily lives. Muji struggles with seizures almost every day. We live with the constant care for seizure triggers, which for Muji can be as simple as sudden sounds, bright lights, missed medications, bowel movement, illness, reaction to pain, or even over-excitement. The unpredictability is a constant shadow, significantly impacting her quality of life and even her schooling. There have been heaps of times when I've received a call from school, informing me that Muji wasn't responding to her usual seizure medication and that they had to call an ambulance to take her to the hospital. These calls are always filled with anxiety and the fear of the unknown.

Muji's seizures appear in various ways. Sometimes, it's a period of continuous involuntary laughter or crying. Other times, she experiences repetitive movements like bite her tongue or cheek, chewing of her mouth, crunching of her teeth, rolling of her eyes, may produce excess saliva and lose control of bladder. We also see absent seizures where she appears unresponsive, her eyes staring blankly into the distance. There is a few second of muscle twitching through out the day and then there are the prolonged seizures, the ones that last longer than five minutes, requiring us to give midazolam. There have been terrifying times when even two doses of midazolam haven't stopped the seizure, forcing us to call an ambulance and rush her to the hospital. We've also learned that pain can be a significant trigger for Muji's seizures, especially following medical procedures like replacing her feeding tube or after her surgery to remove her tonsils and even when she experienced post-surgery from her dislocated hip. These periods often require extra attention and careful management.

I vividly remember a particularly stressful time when Muji's feeding tube started leaking. Because of this, we couldn't give her daily seizure medication. As soon as we arrived at the hospital, a seizure began almost immediately. This seizure lasted longer than usual, add to by an incident in the emergency room. The medical team was trying to insert a cannula to administer medication intravenously, instead of following our usual emergency protocol of giving her oral medication under her tongue. It was incredibly stressful to watch her remain unresponsive for such a long period while they struggled to find her vein. What I learned from that experience, and countless others, is that as a mother, it can be incredibly tiring to constantly explain Muji's complex condition to different people, especially when these incidents happen frequently, in various places, and with new individuals each time. But through it all, I know that I must continue to advocate fiercely for her, ensuring she receives the best possible care and understanding.

The challenges extend beyond just the seizures themselves. The medication Muji takes to try and control the seizure activity often makes her drowsy, significantly disrupting her sleeping pattern. She frequently falls asleep throughout the day, making it difficult to establish any sense of routine. During a seizure, Muji completely loses awareness of what's happening. And the aftermath is often just as difficult. When a seizure ends, she is left looking confused and incredibly tired. It takes time for her to regain her alertness, and just as we see her starting to come back to herself, another seizure can happen, and we find ourselves caught in the same exhausting cycle all over again.

Living with complex disabilities alongside this frequent and varied epilepsy adds another layer to this journey. Communication can be a challenge, making it difficult for Muji to express what she's feeling before, during, or after a seizure. This requires us to be extra aware to her obvious signs and rely heavily on our understanding of her individual needs. 

But amidst these challenges, there is so much love, joy, and hope. Muji has taught us the true meaning of strength and resilience. Her smile can light up a room, and her laughter (even the involuntary kind has a certain sweetness) is the most beautiful sound in the world. Despite the limitations her conditions trouble, she finds joy in simple things – the warmth of the sun on her face, the sound of her favourite nasheed, the comfort of a familiar touch.

Epilepsy Day is an opportunity to not only raise awareness about the condition itself but also to highlight the unique experiences of individuals like Muji who live with multiple disabilities and frequent, complex seizures that severely impact their daily lives, including their sleep, schooling, and overall well-being. It's a chance to advocate for better understanding, increased support, and more accessible resources for families like ours. It's also a reminder of the importance of medical professionals being aware of and respecting established care protocols for individuals with complex needs, and for us as caregivers to have the strength to continue educating and advocating.

Here are a few things I wish more people understood about epilepsy, especially in the context of complex disabilities:

  • Epilepsy is more than just seizures: For Muji, it's a daily battle with unpredictable events that impact every aspect of her life, from sleep and mood to her ability to engage with the world around her and even attend school consistently.
  • Triggers can be unexpected and varied: Simple things that most people take for granted can be seizure triggers for individuals like Muji, and even necessary medical procedures or disruptions in medication can have serious consequences.
  • Each person's experience is unique: The types of seizures, their frequency, and the effectiveness of treatments can vary greatly.
  • Emergency situations are a reality: Frequent calls from school and the need for ambulance transport highlight the severity and unpredictability of Muji's epilepsy.
  • Pain can be a significant trigger: Post-operative pain or discomfort from medical procedures can increase the likelihood of seizures.
  • Adherence to established care protocols is crucial: In emergency situations, understanding and following a patient's known and effective treatment plan is vital.
  • The impact extends beyond the seizure itself: The medication side effects, the lack of awareness during, and the post-seizure confusion and fatigue significantly affect daily life.
  • It can be a non-stop cycle: For some, like Muji, seizures can occur frequently, making it feel like a never-ending loop.
  • The role of advocacy is constant and essential: Caregivers often need to repeatedly explain and advocate for their loved ones with complex conditions.
  • Support for caregivers is vital: Families navigating complex care needs, especially when dealing with frequent and severe seizures that impact schooling and require frequent emergency interventions, often face huge emotional, physical, and financial burdens.

Today, I celebrate Muji's strength and the incredible team of caregivers, therapists, and medical professionals who support her. I also want to reach out to other families who are on a similar journey. You are not alone. Your love, dedication, and commitment make a world of difference.

Let's use this Epilepsy Day to shine a light on the realities of living with epilepsy and complex disabilities. Let's foster a community of understanding, support, and hope. Because every individual, regardless of their challenges, deserves to live a life filled with dignity, love, and joy.

For those in Western Australia seeking support and information, here are some helpful resources from Epilepsy WA:

Thank you for taking the time to read our story.

Until next post, stay blessed.

Muji's mum/Nur

#EpilepsyDay #EpilepsyAwareness #CerebralPalsy #ComplexDisability #Inclusion #LoveAndSupport #EpilepsyWA #Perth #WesternAustralia

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