April 20, 2021
I had the privilege of meeting with Paige Soukochoff today at a local coffee shop. It was an honest delight to meet her – she was friendly and bright-spirited. My impression was that this woman has strong aspirations to be industrious; she wants to use her imagination to build and create. Her drive is seriously impressive.
We talked for about an hour, and, being my first-ever interviewee, she helped me work through the process of how I could go about these discussions. I tried to leave the door as open as possible. I sent her a few questions by email, and she replied beautifully. Thank you, Paige, for everything.
First thing, who are you?
My name's Paige and I'm 24 years old. I was diagnosed with epilepsy at age 8.
And what kind of seizures do you have?
Grand mal, which are caused by sleep deprivation, and petite mal, which just happen whenever.
What has been your experience with epilepsy, speaking broadly?
It's affected my life more negatively than it has positively.
What kinds of challenges have you faced in relation to having epilepsy?
Most of the time, it makes it difficult or impossible to do the things I want to. Whether it be carrying a cup of water to the table or driving or going to work, it is always more difficult than it should be.
What are some key moments or experiences in your life that stand out to you?
When I got my first job. I finally felt independent and like I could actually live a life. To be renting a place and having my own job felt huge. I felt like I had just been released from a prison and was finally free of the confinement of before.
What, or who, has helped you along the way?
Therapy helped me a great deal. I got insanely depressed after high school because I couldn't find a job. I blamed my epilepsy, saying employers didn't want me because of it. Of course, they didn't know about it but my brain wouldn't listen. My friends also helped a lot. They know I have epilepsy and some have seen it happen but they treated me like a normal person and didn't let the fear of 'what if' overwhelm them. They just accepted that it was something that could happen and all they could do was be there for me if it did.
How have you been treated by others, either specifically or by society at large?
It's been a 75/25 split. 75% of people I've met have gone from 0 to 100 when they heard 'epilepsy'. It felt like they were trying to wrap me in bubble wrap and I hated it; I felt suffocated. It was that other 25% that made me happy. I'd tell them I have epilepsy and they'd ask me questions, genuinely curious, about it but would treat me the same as any other person."
What is one thing you want to tell people about what it's like living with epilepsy?
The only thing I can think of that would sort of put our life into perspective is: ~Imagine you have a cast on your dominant arm and all the things you have to do differently because it's there. Now imagine the cast can't come off and everyone thinks you're completely accident prone because of it, even though you didn't do anything for it to be there~ That's similar to what life is like, at least for me, with epilepsy.
How have you found ways to overcome or cope?
I haven't really. The only thing that really keeps me going is something my dad told me years ago. He said, “when you feel like you can't get any lower in life, then the only way you can go is up.”
Do you have any triumphs or accomplishments you would like to share? These don't have to be big, grandiose things - just moments you're proud of.
When I was 3 years seizure free. I've only managed to go 2 years and 3 years once (separately). I'm not sure how I managed to do it but I did and during that time, my confidence grew stronger every month.
Outside of having your epilepsy cured, what is one thing that could really make a difference in your life? No matter how big or how small.
I would want a job. I hate it when I'm home all the time. Even if I go for a walk, it doesn't change the feeling because I know I'm still not doing anything meaningful. I want to work and feel like I'm doing something with my life.
Can you tell me about a meaningful event in your life, be it "good" or "bad?" This doesn't necessarily have to relate to epilepsy.
The one thing that I always remember is the father-daughter/mother-son dance at my grad party (there was a short period before dry grad where we visited with family in our dresses and tuxedos). My dad and I were dancing and we were talking, heart to heart. I don't remember the song playing or what we had been talking about, all I remember is my dad saying, "I'm so proud of you." I still cry when I think about it because I always wanted to make my dad proud. I don't know why he is but I'm happy that he is.
Is there anything else you would like to add or that you think would be important to note?
Don't be a dick and assume there is one kind of epilepsy and that we need to be handled like your grandmother's fine china dish set. Every epileptic is different and deserve to be treated any other person in your life. Just because we are different than you, doesn't mean we should be treated differently than you are.
The cast analogy just blows me away. It’s spot on. Maybe Paige will let me steal it. ;)