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Amanda poses a philosophical question about quality of life and epilepsy

Amanda’s Story

I think the first thing is to acknowledge that the extent of “quality” means different things to different people. There are lots of different ways to measure quality of life. We have a lot of different ways to look at what “quality” means. Is quality the institution we attend for a post-secondary education? Is quality defined by a career, and then further is it about a career that brings financial success or is it happiness? Is it being in a romantic relationship or is it complete independence? Quality of life can be interpreted as a sense of self-awareness and peace. Is it creative accomplishments in any exciting or relaxing degree? “Quality of life” is all of those things or just one. We need to acknowledge that these are different things to different people.

Measuring quality of life

How can we measure our quality of life with the overarching consideration that is epilepsy? We have struggles, unquestionably. Life is different, for every single day and will always be. The measure though, that is where we find our quality of life. I would recommend to anyone (in any circumstance) to reflect on what exactly it would mean for them to have a good quality of life before trying to make the assessment. If you had a perfect world, what would that mean?

I used to think that for me, a good quality of life only meant a financially-stable, brag-worthy, professional career. Everything else was unessential. Now, I don’t know whether I was wrong or if as I got older I changed, but either way, that is not MY sole definition (it’s not really part of my definition anymore at all).

Quality of life, redefined

Here are the things I love. I love running. I love writing. I love blogging and sharing stories about epilepsy. I love costumes and doing extreme costume makeup. I love my friends. I love my family. Painting and strength training are new to this year, but maybe one day I will LOVE them too. One day maybe I will try cooking and love it. I know I love a really amazing Flat White and being able to sit outside and enjoy it. I love watching movies. I love singing in the shower.

My measurements don’t have to be the same as anyone else.  The things that make my life full can change and evolve. Some of the things I choose are outwardly active. Some are introspective. Some take physical strength and some take emotional strength. Some I share with the world and some are just for me. Some of them are a combination of all of that. I enjoy that there is the variety and not just one way that I get to challenge myself.

Epilepsy ever and always – constantly aware

Epilepsy. Epilepsy is always going to play a part in my life. Twice a day, every day, I take medications and I have to be constantly aware that I have a supply. I always carry my pill-tray in my purse when I leave my apartment. I could never ignore my condition. It’s just not going to happen. Knowing that, why would I try? The things I love can still be loved and enjoyed while being epileptic. After the last seizure I had, I couldn’t run, but I could read and I could watch movies. I couldn’t quite make proper sentences so I chose not to write or blog, but I was able to sit and enjoy good coffee slowly.

Not hoping, but deciding

Quality of life is a series of choices. It’s not just a matter of hoping for the best thing to come along and suddenly everything will be perfect. Part of it is deciding. That includes considering what we want to be able to accomplish, even if it goes against what might be the smoothest course. Maybe it is a marathon. I was told a long time ago that I would not be able to engage in sports because of my condition. I chose to ignore that and my life has been better for it. This overall blog is about running and epilepsy. I could go on forever describing the physical and mental sensations of accomplishment and triumph that I experienced the first time I ran a marathon.

The choices we make will define our quality of life. We can think about the things that make our lives harder or different, like epilepsy maybe, or we can choose to focus on the things we do have, that we do love. Quality of life is what we experience. We can try to measure it without including our condition. We can also just incorporate our conditions into our quality of life.

Education. Careers. Love. Family. Strength. Spirituality. We have different measurements for what will give us the quality of life we love. All can be fulfilling.

Choice. Experience. Decisions. Struggles. Flexibility. Acceptance. We have epilepsy or know someone who does. It’s just a medical condition.

No limits

The only restrictions to having an amazing, fabulous, rewarding, loving, incredible quality of life while having epilepsy are the ones we put on ourselves. How much more would our worlds be if we chose to disregard superfluous limits or the measurements of others? Let’s focus on the things we have, what we can do, and the positive world around us. We have epilepsy. We can choose to have a great quality of life.

  1. Vinay Jani
    | Reply

    Truly inspired by the way Amanda has penned down her story. Take a bow

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