phillip's Story

Ok I Have Epilepsy But Hey Life Has To Move On

My journey with temporal lobe epilepsy has not been short but I have not ever allowed it to define my potentials, aspirations, and relationships with people. I first had my episode when I was 13 and now at 38, I am on medication and exploring alternate intervention to attain full freedom from epilepsy.

I am blessed to have achieved things in life amidst epilepsy: latin honours in my university bachelor and masters degrees; valedictorian of my high school class; relative successful career as director in a multi-national company which enabled me to live in different places around the world - Papua New Guinea, Bangladesh, the Philippines and now in Malaysia; and my own family (my greatest achievement), with a supportive spouse and three kids who are also in Malaysia savouring the culture of this nice country.

Of course, with epilepsy there are challenges, but I do not think they are insurmountable.

1. I don’t drive now.

2. My intake of caffeine and alcohol is very much reduced (only reserved for special occasions).

3. I need to have the proper amount of sleep.

4. I have to be more creative in managing my stress. Physical exercise has always been a part of my regular routine. I have started my meditation practice last year. I do listen to nature music on Spotify to silence my mind at times.

5. When I was stationed in Papua New Guinea, I had to arrange medicine supply from Australia as medication was not fully available locally. Also, there was no epilepsy consultant in the country, so I did tele-consultation with my neurologist in Manila.

Partnership with my doctor has been a key factor in managing my condition. These days, my medication and dosage are assessed quarterly and adjusted depending on my response to the drugs. With epilepsy, it is important to have an excellent medical provider. (When I first had my episode, I was brought to an ENT doctor who misdiagnosed my condition. After my second episode, I was brought to a neurologist who made the correct diagnosis).

Rather than an attitude of refusal, I accept the challenges of epilepsy and work around them. I stopped a long time ago to be embarrassed by being an ‘epileptic’. Even with this illness, I am thankful as I remain to be highly productive, able to provide for my family, and pursue my hobbies.

I refuse to be defeated by this condition. My mindset has always been: ‘ok I have epilepsy but hey life has to move on’. Self-help is important. But support from family and friends are equally essential. They know and support the fact that I am on medication and that I should take precautions. Having them at my side makes me not feel alone with this condition.

My journey with epilepsy is not concluded yet. My continuing journey are aimed at practically two things:

- fully controlling my seizure is the goal hence my consideration of alternate interventions; - sharing my experience with people who have epilepsy (and their carers); probably they can learn from what I’ve gone through and I could learn from them as well.

Lastly, on hindsight the best thing that this journey has likely given me is that it really made me a truly resilient person. And I can’t emphasise enough how this resilience contributed beneficially to my life thus far.

By Phillip San Jose

March 2021