What’s your story? Tell us about yourself.
My name is Chrissy and I am 25 years old. I have been dealing with seizures for the last four years of my life. I used to lead an independent life. I had two jobs, my own apartment, and a fairly normal life. Then, one day, I randomly had a seizure and my life changed. I got sick, and even had another seizure, which didn’t stop, and ultimately put me into intensive care for three and a half weeks. Each time the medical staff tried to wake me up, I would go back into seizing. It was a really scary time. My lungs collapsed, I had blood clots in both arms, and came down with pneumonia. Thankfully, I overcame this, but life has become difficult to adapt to, and I can no longer live alone. However, I will not let this experience defeat me! I want to help others and raise awareness so that anyone dealing with this doesn’t feel alone.
When’s the first time you can remember having a seizure?
I was at work. I worked the night shift at a hotel, and I woke up on the cold floor with the worst headache I had ever had. There were ‘green men’ around me who I soon realized were paramedics. I was so scared and I had no idea what had happened.
What does your day-to-day look like as a self-advocate? Walk us through YOUR life on an average, normal day.
Aha, this question made me smile! No day is the same for me. Some days, I simply cannot get out of bed. My head is pounding, I feel sick and weak, and I’m overcome with feeling ill. So, I do what I can from my laptop, binge watch a tv show, or listen to some music (if my headache isn’t too bad) Some days, its just impossible to do anything. It’s those days that I sometimes feel sad and overwhelmed, but I try to remember, it wont always be like this. I have to breathe and get through it. On days where I’m feeling well, I love to help people. I have a passion to help anyone who is going through any kind of difficult time. Giving someone a listening ear can help in a huge way. Ultimately, it’s the little things that go a long way, like taking someone out for coffee, or helping someone around the house with something she/he needs. I especially love chatting with people who are struggling with epilepsy and give them a voice, and funny enough the best way to do that is on Instagram! I also used to work at a children’s hospital doing youth work that supports those having extended hospital stays. My hope is that one day I’ll be well enough to do that again!
What have you found challenging about dealing with epilepsy as someone who is living independently? What has become easier for you over time?
Unfortunately–due to being in intensive care from my seizures and having hurt myself so many times in a seizure–I can no longer live independently. For instance, I have burned myself making tea, falling down the stairs, carpet burns, bruises, broken ribs, and so on… I have injured myself time and time again all because of my seizures. That part makes life difficult. I now live with a couple friends in a ground floor apartment. I try to live as independently as possible, but I have learned to ask for help if I need it. I also have a mat under my bed so that If I have a seizure it will sound an alarm to my housemates that I need help. It’s really hard having to learn to lean on others, but I am learning that it is okay to ask for help!
How has having epilepsy changed the way you look at the world?
I have learned life is unfair, that our life can appear to be going one way, when suddenly our world changes forever. I have also learned that love can overcome! I have some amazing friends who love me regardless of my needs. Yes, there are people out there who don’t understand me (and say awful things about my condition). There is a whole world of support out there for others to lean on.
I had this idea to make a video about people dealing with seizures and epilepsy. I contacted people from all over the world via Instagram asking them if they wanted to share their stories and I had a massive response. It’s called Standing Together, because I believe we should do just that! Yes, the world can throw horrible circumstances at us, but together, we can get through anything.
What would you say to someone who doesn’t know anything about epilepsy?
Educate yourself! It’s scary when you have no control over your body and it’s super exhausting, too! There is a lot more too it than shaking on the ground. One small seizure can have an affect me for days! There are also so many different types of seizures, which can be very complex! Not all seizures present themselves as shaking on the floor! So, I encourage you to learn about what you can do when someone else is having a seizure. Let’s spread awareness!
What advice would you give to someone (whether a caregiver or individual/self-advocate) who’s stepping into this journey of dealing with epilepsy?
There are going to be difficult days, days where you feel overwhelmed and ask, “why me?” That’s okay! Don’t feel bad for having those feelings.What’s important, though, is to not stay in that place. Give yourself some credit; this is a very difficult thing to deal with. Second, don’t be afraid to ask for help. Call on friends and family for support, it doesn’t have to be a taboo subject. The more you talk the easier it gets. Eventually, you’ll realize more people want to be there for you than you think. Don’t give up, you can have a life with this thing.
– Chrissy Jones, Springible Contributor