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What are your Positive Experiences and Gains through Epilepsy?

Posted by Chris Gautier, Volunteer Mentor @santosha, Feb 1, 2023

A Very Good Morning to All of You!
This group is a very dear and excellent group for sharing information and exchanging experiences, bringing a lot of learning. It is a very open group where we can express our anxieties, fears and doubts, always getting answers and support from others. But how about doing another type of exchange this time? Share the positive experiences we've had through epilepsy, what has this condition brought us in a positive way into our lives?
At the beginning of my treatment, I confess that everything seemed very difficult and painful. It was somewhat of a nightmare for me. But after really accepting my condition, being treated more appropriately for my epilepsy and my body, and having better control of my seizures (I'm still not free of them), I can see many positive things that epilepsy has brought to my life.
I begin this sharing with the exchange of some positive experiences that epilepsy brought to my life.
- More contentment and appreciation of the basic things in life, like a good night's sleep, not having constipation, being able to eat without feeling discomfort, among many other things. These were things I took for granted and didn't pay much attention to and value. With epilepsy and its treatment, my sleep was greatly affected (I suffered a lot from insomnia), I had problems with digestion, having difficulties eating, among other experiences. After going through these experiences, I can say that I smile more easily at life now than before. I don't need much to be happy and smile at life!
- More patience and understanding of the people around me. My mother was diagnosed with Alzheimer's after my epilepsy diagnosis. For sure, if I hadn't gone through my experience, I wouldn't have the patience I have with my mother today. Through epilepsy, I can understand her better. Epilepsy certainly turned me into a more sensitive and human person.
- Knowing of my true friends. After working hard on accepting my epilepsy through psychotherapy and many readings (spiritual and about epilepsy), I opened my condition to many people. Some actually walked away, others hugged me. Through my condition, I got to know who are my true friends.
- Easier forgetting of offenses and bad experiences. With epilepsy, my memory is no longer the same. With this, I forget bad things more easily. This was the other, positive side of the decrease in my cognition.
- Interiorization process: better knowledge of my true self, rebirth of myself. Epilepsy rescued my true inner self, my true way of being. Throughout life, we incorporate many attitudes to satisfy the external world, forgetting about ourselves. Of course, all this required a lot of willpower through the excellent support of my neuropsychologist.
And for you, what have been the positive experiences and gains you have had through your epilepsy experience?
Santosha

Interested in more discussions like this? Go to the Epilepsy & Seizures Support Group.

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Chris Gautier, Volunteer Mentor | @santosha | May 16 3:47pm
In reply to @louissc "I often joked previously - when I was first diagnosed approx 10 years ago, I was..." + (show)
Profile picture for louissc @louissc

I often joked previously - when I was first diagnosed approx 10 years ago, I was on a wheelchair wherever I traveled, including air travel. My family took a short 45min flight to Kuala Lumpur once for a brief holiday after me lying on the hospital bed for so long. At airport immigration, there’s normally a lane for passengers with needs. That lane is mostly empty when there’s a line for the rest. My caregiver wheeled me straight to that empty line and my family followed. When boarding starts for any flight, it will normally start with the business class pax, those with elite frequent flyer status and then passengers ‘needing special assistance’. Yeah so we boarded ahead of most then, without queue.

I will call that a “privilege “?

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@louissc
Hi Louis!
I would absolutely call it a privilege too! I had this same experience on my last trip to Uruguay, and I have genuinely appreciated that kind of care.
And yet, when I pause and reflect on everything epilepsy has brought into my life, that airport privilege feels like just the tip of the iceberg. The gains that have moved me most deeply are the ones that came from the inside out: those we earn, quietly, through living with this condition.
Epilepsy set me on a profound journey of self-discovery — one I am not sure I would have embarked on otherwise: a deeper appreciation for the ordinary moments in life that I used to take for granted; a greater respect for myself, my limits, my needs, my rhythm; more patience, both with myself and with others; the capacity to be more flexible and to sit with the unexpected, rather than fighting it; a gradual, hard-won ability to release the need to control everything; more resilience than I ever thought I had; and a steady, grounded sense of contentment — what in yoga we call santosha — that I now carry as a daily practice.
I wonder, Louis — and I ask this with genuine curiosity — have you noticed any of these kinds of gains in your own journey?
Chris

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louissc | @louissc | May 16 9:35pm
In reply to @santosha "@louissc Hi Louis! I would absolutely call it a privilege too! I had this same experience..." + (show)
Profile picture for Chris Gautier, Volunteer Mentor @santosha

@louissc
Hi Louis!
I would absolutely call it a privilege too! I had this same experience on my last trip to Uruguay, and I have genuinely appreciated that kind of care.
And yet, when I pause and reflect on everything epilepsy has brought into my life, that airport privilege feels like just the tip of the iceberg. The gains that have moved me most deeply are the ones that came from the inside out: those we earn, quietly, through living with this condition.
Epilepsy set me on a profound journey of self-discovery — one I am not sure I would have embarked on otherwise: a deeper appreciation for the ordinary moments in life that I used to take for granted; a greater respect for myself, my limits, my needs, my rhythm; more patience, both with myself and with others; the capacity to be more flexible and to sit with the unexpected, rather than fighting it; a gradual, hard-won ability to release the need to control everything; more resilience than I ever thought I had; and a steady, grounded sense of contentment — what in yoga we call santosha — that I now carry as a daily practice.
I wonder, Louis — and I ask this with genuine curiosity — have you noticed any of these kinds of gains in your own journey?
Chris

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@santosha

Hi Chris,

Flight attendants would pop by my seat and ask ever so subtly “Mr Louis will you require any assistance upon disembarking?”. That’s because I checked in the wheelchair only at the aircraft doors and all the flight attendants would know I had some medical condition although I could walk to my seat. Some touchy passengers would feel embarrassed if anyone was to say “would you need your wheelchair?”. I knew they genuinely cared about my feelings. Of course, I would always hear some nosey people around commenting “he must be some big shot” 😂 I just told myself with this condition I would be a new me.
Although I must be strong in some areas, in some I knew I would be fighting a losing battle. It’s like making the world changed for me instead of me adapting to the world. It’s like a left handed person (me) making a world meant for right handers change for me. That’s not going to happen. This condition made me a lot more reasonable and I am still going to make myself work no matter what because I can.

I am still reading and learning about yoga! Although with a kid, he’s going to be a distraction and so hard to be “at peace”.

Cheers,
Louis

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