Tucky Williams

Purple Day 2023: Tucky’s story

Tucky Williams created a drama TV series Girl/Girl scene and starred as the main character Evan who had epilepsy.

For Tucky, this was no acting matter as epilepsy is an all too part of her life. The award-winning filmmaker was diagnosed with epilepsy in 2009.

She said: “I have focal seizures that become generalised and become tonic-clonic seizures.

Medication has stopped them and I haven’t had one since 2010 which is amazing. The side effects of medication are so intense. I wonder sometimes if it is worth it.

I feel like I have to take things more slowly. I’m always paranoid that people will think I am being lazy.

But I am working so hard and at the same time want credit for pushing through and being able to make a movie feeling as terrible as I do.”


Been diagnosed with epilepsy

Tucky was diagnosed with epilepsy after taking a tonic-clonic seizure while teaching yoga to a class of 25 people.

One of the students was a pulmonologist, who assisted by a nurse, performed CPR until Tucky could breathe on her own.

She relies on medication, a special diet, and a regular exercise routine to prevent any more seizures. She has also made it her goal to raise awareness of epilepsy through advocacy.

She believes more needs to be done in the portrayal of epilepsy on TV and in films.

Tucky added: “More needs to be done because so many people are having them. 70% of people in their lifetime are going to have a seizure.

Many times, people have explained to me the strange thing that happened to them. They explain they get really emotional and felt like they were sinking into an abyss.

I really want people to understand that epilepsy is more common than you think.

It needs to be depicted because you need people to know how common it is and also for people to know not to call an ambulance every time someone has a seizure, it is really not necessary.

If I look uncomfortable put a pillow under my head, and don’t put anything in someone’s mouth.

Just want epilepsy to be normalised and people know what to do when someone has a seizure.”


Dispelling myths and stigma

Tucky hopes her TV series can help dispel some of the myths and stigma attached to epilepsy and is an honest portrayal of what epilepsy is.

She said: “I hope so. You never really get to talk to people. A lot of people have written to me and had questions about it and I think that is great.

It’s on Amazon, I don’t know what people take away from it but I hope they see it.

I do an honest depiction of what epilepsy is and my stuff has always been about honesty.

I’m not going to make this nice and not going to make it we have epilepsy, we are fun and happy all the time. I’m going to make it as painful as it deserves to be.”

If you would like to share your experiences of living with epilepsy, please email David Coates our Communications Officer at dcoates@epilepsyscotland.org.uk or call 0141 427 4911.