Monday, December 9, 2013

Education, Understanding, and the Battle of Senses

HKPP is an ion channelopathy and a systemic disease, and it is very complex. Not only has it resulted in kidney disorders, skeletal weakness, reproductive system failure, endocrine problems, and muscular dystrophy, I am also hypersensitive to lights, smells, touch, certain tastes, and certain sounds. Once it became more severe and I realized that I have sensory problems, my life started to make so much more sense. I can remember walking into class growing up and instantly feeling simultaneously drained, nervous, and agitated. I even escaped to the office or restroom sometimes because I just had to get out of the room, and I couldn't explain why, but I HAD to because I was in pain and felt like I was going to collapse. Unfortunately, this was never addressed on a professional level in school, but there were plenty of mean and ignorant people in my life who said I was crazy, faking, seeking attention, and never took me seriously.

I found the same thing happening in college when my health began to plummet again. I definitely don't regret going to college, but I regret spending extracurricular time there, because it did more harm than good. Hindsight is 20/20, as we all know. I also finally figured out that public places like Walmart were a big trigger thanks to the crowd and lights. I shop at smaller grocery stores now (except the occasional Publix run, but I try to go during non-peak hours when few are there...also, thank God for power chairs). I wear sunglasses a lot now, including indoors, and it has made a big difference in how well I cope with sensory overstimulation. I spend a lot of time alone now in a quiet, dimly-lit room, which might sound sad, but I'm going to do whatever helps. People may think I'm weird, crazy, or a loner, but there are reasons for everything I do and I'm finally learning that the criticism of others is their inadequacy, not mine.

This is a big world, and there are an awful lot of people in it that we must coexist with. It should be everyone's duty to learn to do so with respect and grace. Education and understanding are the only way we will progress as the human race. Why wouldn't we strive for that? Is it not our mission to grow and become better with each passing day? We owe it to ourselves, those around us, and future generations.

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