I’ve been recently sorting through old paperwork. I’m trying to downsize and piles of stuff like that either need to be recycled or shredded. I found grad photos from high school, receipts for things I don’t own anymore, angsty diaries from my teenage years and old resumes. Some things are now shredded, some are recycled, some are going to be filed away for future paper purges. I still have piles to go through. There are still piles of paper spread about the floor, piles that I don’t know what to do with and piles I haven’t even touched yet.
One of the things I found was an entire folder of newspaper clippings from when I was first diagnosed with epilepsy. These clippings date back to the late 90’s, and I feel really old when I acknowledge that that was 20 years ago. People wrote into advice columns of the newspapers for advice about all sorts of things, including epilepsy. The advice providers also answered questions about love and finances. There were also clippings from the newspapers about studies done, with questionable methodology.
What did I learn? People with epilepsy are more likely to have seizures while being active than people who do not have epilepsy. Not entirely surprised by that gem. Activities that involve impact (running, soccer, basketball), a risk of head trauma (hockey, football, lacrosse) and independent movement (swimming, weight lifting, gymnastics) can be hard on the body. First off, challenging the body is part of the joy of activities. Second, what’s left if it can’t be challenging? Interpretive dance? Ballet is hard on the body (have you seen what en pointe does to feet!?!?). Yoga can be challenging (holding one pose for long periods of time on one leg!?!).
Yesterday I went for a run. The whole time I was more at risk of having a seizure than the other people running who don’t have epilepsy. It involved impact and independent movement. I suppose I wasn’t terribly at risk of head trauma, but I’ve got ¾ of the things I shouldn’t do. Today I went for a swim. Since there is no impact, I’ll still have ½ the dangers of being active. Guess what!?! I feel fantastic. My legs are a little sore from the run, but that’s to be expected. My arms might fall off, but it’s probably been a year since I actually did lane swimming. Neither my arms or legs being sore is related to epilepsy. (Note: I did let the lifeguard at the pool know which lane I would be in and that I have epilepsy. She was super chill about it. Just because I CAN swim doesn’t mean I don’t need to take reasonable precautions).
Currently, it’s recommended that people with medical conditions are active. This applies to a ton of different conditions, not just epilepsy. Being active reduces stress, provides physical and emotional strength and can be a measurement of goal-setting and success. Team sports are a way to meet people and get involved in a community. Yoga and meditative practices are a way to find spiritual peace and physical wellness at the same time. I run, and I travel to run, and I meet new people and explore new places. I have a girl friend who is visually impaired and she runs marathons. I have a girl friend with anxiety who found weight-lifting to be a source for strength and empowerment for her physically and emotionally. There is a lot more support for people with disabilities being active than there has ever been. We have support from sporting directors, from the organizations that put together races and from other athletes (with and without conditions).
In ten years, maybe the advice will be different. It definitely will be in twenty years. Things change. The important thing is not to get caught up on the one piece of advice that we hear and never be open to new information. Research provides new results. Revisions happen. Individuals beat the odds. We learn that we can be more, we show that we can do what was previously thought impossible. Sometimes that takes time and formal study. Sometimes it’s just something we know inside ourselves. Sometimes we know what is best for us, and that doesn’t come from an advice column.
Let’s also keep in mind that advice for treatment of epileptics used to also include burning us at the stake, locking us in asylums and ever-popular exorcisms.
Now excuse me while I go make a workout plan and avoid sorting through paperwork that’s been in a box for twenty years (and I’ll likely put in another box for another twenty years).