UNDERSTANDING THE VALUE OF RESPECT AND BOUNDARIES WHEN FACED WITH A CHRONIC ILLNESS

I recently came across a short film called ‘Under The Lights’. The film is about a high school student who goes to prom despite the fact that he knows it’ll cause him to have a seizure. When the movie starts, he’s already had a seizure, and he’s in the girls’ school washroom. A female student sees him, and panics because she doesn’t know what to do or how to help him. She attempts to call 9-1-1, but he stops her before she could speak to the operator. Instead of judging him, she tries to understand him and where he’s coming from. Through her compassion and empathy, a new friendship blossoms.

I wasn’t diagnosed with epilepsy until I was in my 20’s, so I never knew what it was really like to miss out on such occasions as a school dance because of something I couldn’t control. However, I definitely could relate to the film on a much bigger scale. After all, life as a whole is just like high school, except with much bigger stakes. That’s in no way me stating that children with epilepsy have it easier. Kids and teens struggling with epilepsy is completely different than adults struggling with epilepsy. It’s hard to compare the two, but I can definitely say with the most reassurance that no matter what age you are and at what stage you are in life, struggling with epilepsy is hard. Going through the day can almost like a 9-5 job, or maybe even two.

When I was just diagnosed, all I wanted was to move forward with my life. I didn’t want my life to change one bit. I sacrificed my health for a lifestyle I couldn’t keep up with anymore. I was doing such things as drinking, clubbing, smoking, and staying up late just as I used to before. It was a couple of years later, in 2018, that I realized that I needed to make changes in my life in order to be healthy. Taking pills is great, but it doesn’t solve all my problems. Hence, I made a decision that I needed to make changes in my life.

My biggest obstacles at the time were those people that I called friends. They’d tell me such things as ‘Having one drink won’t kill you,’ ‘But clubbing is SOOO much fun, you just can’t miss it!’ or my absolute favourite, ‘It’s just shaking. It’ll pass anyways, and you’ll come back to normal in no time.’ And not only did they say that, but they also had the audacity to laugh at my condition at my expense. I’d always make excuses for them by telling myself that no one truly understood where I’m coming from because they’re not in my position, and therefore, I’d continue to allow them to treat me like a piece of garbage for an entire year. This is why it was so refreshing for me to see a character in ‘Under The Lights’ that was so understanding and willing to listen and learn instead of being completely irrational and ignorant to the matter.

November 2018 was when everything changed for me. I was having dinner with a friend following both of us attending a baby shower. I’ve written about this particular friend in previous posts, but here’s a refresher to the newbies and those that need a reminder. While at dinner with my friend, we talked about everything from friendships, to lifestyle, to health. I told her everything that I was going through at the time, which was A LOT. She was the first person I ever told absolutely everything to without any filters because she was the only one who seemed to truly understand me, which seemed odd to me. Four days later, I got that dreadful phone call from her aunt, and it was then that I got all the answers to my questions – my friend was quietly battling cancer. Even her family didn’t know until a short time before her death.

During the dinner, my friend and I talked a lot about how the people we surround ourselves with can affect us both positively and negatively, as well as how there’s something called positive toxicity. The energy that people in our lives bring us can affect our daily lives, our mental health, and our chronic (or any other) illnesses. When we talked about why specifically her friendships with those we both knew and even met through ended, she simply said she had more important things going on in her life and didn’t have time, nor did she care enough to prove to anyone who had issues with her or those that thought of her to be a ‘not so good of a human being.’ She came to this conclusion at the end of her life following an emotional healing trip to Japan before her death. That was what she wanted to do instead of completing any medical procedures relating to her cancer.

It’s been more than 3 years since my friend passed away. But I’ve taken our last evening together to heart. After her death, I distanced myself from a group of friends I was close with for almost a decade. Within a couple of years, I saw more friendships of mine going the distance. Some weren’t giving me what I needed. Some didn’t didn’t make me feel good about myself when I was around them. Others either had an issue with me and/or with my husband. Regardless of the reasonings behind these friendships ending, one fact will always be true – it’s not ever my responsibility to prove myself to anyone, meaning it’s not my responsibility to prove to anyone that I’m worthy of their time. Now that I have all my sh*t together and have a whole new perspective on my life, I feel that as though I started completely anew. I don’t even remember much about my old life.

‘Under The Lights was a great short film, and hopefully it will get a green light to become a full length movie. It’s a realistic take on what it feels like to struggle with epilepsy; to still want to feel ‘normal’ and do ‘normal’ things that people usually take for granted. The harsh truth is, however, there’s a whole new normal for someone who’s struggling with epilepsy or any other illness, whether it’s a choric one chronic or not, if a good life is what’s important to the one who’s diagnosed.When it comes to epilepsy, a brain surgery is another option, but it’s not the answer to everything. In fact, statistics show that it’s only 80% effective.

A friend of mine and I were recently having a conversation about boundaries, and how a lot of friendships end because of lack of respect and boundaries being shattered and broken into tiny little pieces. That’s absolutely true in every way. I, for one, navigate my friendships in the present day based on whether I get the respect I deserve and whether any boundaries are being broken, especially when it comes to my health. At the end of the day, no matter what I do, no matter who’s in my life and who I surround myself with, and no matter what happens in my life, my health will always come first. My ‘normal’ may not fit someone else’s definition, but it’s MINE, and I’ll be sticking by it. There’s also a twist to it, however, that ‘Under The Lights’ shows perfectly, and it’s that new friendships can blossom BECAUSE there’s respect, love, empathy, and compassion shown right from the start. It doesn’t happen too often, but it’s definitely possible.