Supporting Liz Rubino through Epilepsy

This past month, my “Sissy” aka Liz Rubino, a vibrant professional performer, teaching artist and therapist, suffered a second tonic-clonic (commonly known as grand mal) seizure that lead to a diagnosis of left focal temporal lobe epilepsy with secondary generalized seizures that spread to her entire brain as well as hippocampal sclerosis. For many epileptics, they experience an “aura” or feeling of déjà vu or panic, etc., that warn them they are about to have a seizure which allows them time to ensure their safety prior to the seizure occurring. Unfortunately, Liz’s seizures happen with absolutely no warning. People with this type of epilepsy live with the possibility that a seizure could occur at any moment, moments many of us take for granted. For instance, even if she has three months free of seizures, her epilepsy is deemed by medical professionals to be “under control”, she is still left with the terrifying thought that if she drives there is always a risk she could experience another seizure placing not only herself at lethal risk but other drivers and pedestrians on the road. Her life has been irrevocably changed, and there is no guarantee she will ever live seizure-free. Everyday choices have become onerous and deeply frightening for Liz though she remains hopeful her medical providers will find the safest and healthiest way forward.

I had no idea what all of this meant, and so as I researched and spoke to Liz, it became evident that this is a life-changing event that has left her grieving what she has always known about herself and how she moves through the world, without the ability to work this summer and two lost months of wages, many doctors’ appointments, performance cancellations in NYC, not to mention an intensely emotional journey learning to accept this new challenge. It is hard for me to fathom the immense impact an epilepsy diagnosis has on every aspect of Liz’s life. Even though the medical and science world have brought us so far in addressing this condition and many people with epilepsy live “normal” lives, it remains a disease and disability that is wholly unpredictable and therefore, sometimes paralyzing for someone who simply wants to walk through life as they always have.

As Liz and I spoke about the impact of her diagnosis, I began to think about how I might support her until she is cleared to drive and, pending no additional seizures, goes back to work in September. I thought I could help raise enough to pay six months of her Connecticut rent; it would be an immense weight off of her shoulders in these early stages of her epilepsy journey. Stress is contradictory to her well-being moving forward.

Liz would never ask for help. But if you know Liz, she would be the first in line to initate this for a friend or loved one in the same situation, so I am asking for her this time. I would so appreciate any help you can give to Liz, so she can rest and recover and begin to move forward without the financial burden or fear this summer.

My fundraising goal is $7500.00. Please know there is no donation too small. She would be so touched by people just standing behind her at any level. Help me get Liz back on her feet during this difficult period of her diagnosis that has left her, as she put it, “unable to trust her body’. Thank you so very much!