Jordan Downes

‘Epilepsy- Journey going from Shame to Strength’

Sunday 16th Mar

The feelings of shame can appear and take over ones life sometimes. However it depends on how we respond to these precious moments in time, which is truly important. This is why this time of year is so Important, in bringing both the stories and those impacted by Epilepsy to the Forefront. 

My feelings of shame have followed me for a long time, especially when it comes to my relationship with myself, not seeking help earlier, not pushing my boundaries, nor allowing for people to mistreat me etc. 

A lot of this shame though derives from that feeling of being different because of my medical history with Epilepsy (and hydrocephalus) and the pain which came from that. This feeling of ‘should I not do something because I am different’ (being classified by others as not being able to do things), had left me lonely & isolated for most of my childhood & early adult years. Yet in a way, these feelings became my safety net & comfort zone which in turn created a psychological maze with no way out. 

This starvation of life, & feelings of shame in falling behind everyone else, pushed me to that edge of suicide at times (Life Line 13 11 14). However with a lot of help and intervention during my epilepsy journey, the challenging times has got me to rethink shame a little differently. 

Utilising my epilepsy journey as a steppingstone to propel me forward through life, in addition to my life being a representation of how resilient I have been to overcome these hurdles to reach the person I am today. 

I have been able to get more empowered with not feeling embarrassed about my Epilepsy, in addition to the impacts that have resulted from them. Coming out of the shadows, where I have been both out of sight and out of mind for a lifetime, in order to prevent any judgements come crossing my path. I just want to feel happy and content with sharing my triumphant journey with those who will take the time to listen. 

Both the Epilepsy and Hydrocephalus within me, will no longer be seen as a negative entity separate from myself, but all combined into one strong and courageous man. 

Epilepsy Warrior. 

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Hidden challenges of epilepsy

Monday 3rd Mar

• Depression
• Tiredness (especially after seizure)
• Restrictions to certain activities 
• Memory
• Processing information 
• Feelings of being less than 
• Uncertainty 
• Disclosure (discrimination from workplaces and social environment) 
• Flashing or Bright lights (Photo-sensitive epilepsy)
• Different types of seizures 
• Multi tasking 
• Stigma
• Nausea 
• Restriction to certain food and beverages. 
• Loneliness / social anxiety 
• Sleep deprivation
• Body tremors 
• Maintaining employment. 
• Resulting from pre-existing medical conditions
• Online discrimination 
• School and workplace bullying 
• Brain fog
• Challenges with decision making 
• Shame and Embarrassment
• Confusion and Panicking
• Loss of independence
• Increased sun damage and drowsiness from certain medications

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Life Story with Epilepsy

Sunday 2nd Mar

Born in Ryde hospital in Sydney Australia. While everything seemed fine over the first few years as a toddler. Sudden changes that resulted in a diagnosis of hydrocephalus and the need for brain surgery and the implementation of a shunt. This eventually lead to something further, which was a life with Epilepsy, and its impacts being introduced into my world. 

My childhood had a certain change trajectory as a result. While continuing in most parts to do the normal childhood activities on the surface I.e school, sport etc, the impacts of dealing with a significant brain condition, Epilepsy and the complications that came as a result, created changes that are still being felt today. Both Physically and emotionally. 

One of my passions in the last 10 years has been my training commitment to learning Jeff Speakman Kenpo 5.0. Having a goal to be one of the few people with epilepsy and hydrocephalus (let alone those without) to reach the summit of being a Black Belt. I have been on this journey since 2014. My doctors have told me numerous times that something less physical would be more suitable for Epilepsy and hydrocephalus. However the reward has far outweighed any potential risks involved. Through perseverance, consistency, support and implementation of certain safe guards, I am well on the way to reaching my goal in an obtaining my black belt (recently reaching my 3rd in Brown). 

It’s always great when an environment or space is available to openly talk about the challenges, shame etc. I believe this is just as important as any physical support or medication. As mental health challenges definitely can present themselves throughout a life with Epilepsy, making it very important to get the appropriate help and not taking it on all alone. While a part of my emotional shell (that kept me closed off for a significant period of my life) has been removed in regards to being able to share my epilepsy journey with people whom will both understand and that I can trust. There is still a hesitation at times when it comes to expressing and reaching out to the wider community. Whether this is in a social or workplace setting. The hope is always there for one day these worries no longer being needed. 

 I can definitely say that I’ve been able to identify the strengths which  I’ve developed as a result of my life journey with both a brain condition(s) (epilepsy and hydrocephalus) and the continuous possibility of seizures involved. Having the help and understanding from supportive souls in reach, cannot be understated. However the next step is to be able to freely open up and to talk about it all in a verbal setting, without the fear of judgement overriding any of the positive outcomes or strengths that could come as a result . While being able to give myself the same encouragement, insight and acknowledgment of successes, that I give to others. 

Fast forward to the now 2025. When I reflect of words around my story with Epilepsy that I have spoken over the years, they are so raw and real. In today world it comes it does come  more from a place of happiness, but also the feeling for further work needing to be done. Not only is this regarding my own personal journey with epilepsy, but the feeling that further support is still needed on both a community and national front when it comes to Epilepsy awareness throughout Australia.

I am very encouraged with personal change since last year. Now it’s about continuing on with new challenge of 2025, spreading further awareness, changing perceptions, making every space possible to reach out and disclose to others. Growing even more into that strong courageous man that I am. Both heart and soul.

https://www.makemarchpurple.org.au/s/400/407/e

💜🦸‍♂️

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