Daily thoughts and considerations

One question I get often is how this whole thing has affected my day to day life. My typical answer involves mentioning my medical alert bracelet, helmet, and how I try to keep my whereabouts known by at least one person at all times. The whole answer is a whole lot more complicated. The main points revolve around safety, but it’s not things most people would think of. One facet of that is weather. If it’s raining I typically do a double take about going out for minuscule things. It doesn’t take much water to drown in. I have no idea if I would come to if it were happening, but I do know I don’t want to find out. It it’s cold I make sure to always wear extra layers, especially if I’m out after dark. I never know how long I’ll be unconscious or how long till I’m found. I’ve had a hand full of experiences where running even room temperature water on my hands is painful. Another thing I think about, but can’t really plan for is wildlife. I once had a seizure outside a friend’s house and she lived next to a field of sorts. I came to absolutely covered in mosquito bites. On the topic of wildlife, I’m going to admit one of my biggest phobias surrounding my seizures. I am petrified that I will have a seizure outside my house at night and end up being nibbled on by the rats.

Another piece of this puzzle is location. I have commonly canceled plans due to where they are. What’s so special about certain locations? The unfortunate answer is proximity to either a certain hospital or fire house. I want to tread carefully here. I want to add about million qualifiers to what I’m about to say, but this is my experience. If I add my qualifiers and try and water this part down I feel that would be a disservice to you and that would stray from what I’m trying to accomplish here. Those who know me have probably heard a handful of my horror stories. I’m going to share a number of the big ones. The starting point was when I was still in college. Every time I had a seizure security called 911, by the time they got there 95% of the time I was relatively conscious. They were as sick of me as I was of them which led to the following situation. I was still getting my barrings. I was sitting up against the wall just outside my room in my suites living room. This fire department guy charges in and stands in front of me. He was holding a set of keys on a stick. (trust me, its relevant) He begins to yell at me. While he’s yelling he slowly leaning closer and shaking these keys in my face. His general message was that I should cut the shit since they could be out helping someone who actually needed help. During this encounter, I was petrified. I kept thinking I wanted to scoot back, but couldn’t because I was trapped against a wall. I recall looking one of the security guards in the eyes trying to convey the message that I honestly thought this guy was going to hit me with those keys since he was so upset. Security did nothing and the guy said I had to go the hospital, I couldn’t refuse. (I’ve since learned this is not allowed. If I’m coherent to time and place and not a threat to anybody or myself I have the right to refuse.) That was my first experience with someone actually yelling at me about this; unfortunately, its nowhere near the last. As I’m writing this I’ve realized I want to make the horror stories their own post so I’m going to assume you get the general idea of what has become standard operating procedure. The main points here are that I’m faking (my favorite is when they tell me why I’m faking) and I should stop. Depending on the severity of these encounters I will make a conscious effort to avoid that area if at all possible. I’m in the process of learning to control my reaction to these events as I have no control over the events themselves. That ranges from whether or not I have the balls, feel it is appropriate or constructive to try and stand up for myself and simply how much I let it affect me afterwards. The how much it affects me afterwards is something I am constantly struggling with. Which is why I sometimes try to maneuver my life around being in that certain area for awhile. I’m putting physical distance between myself and a problem. Does it suck? Yeah! Do I think it shouldn’t happen? Fuck yes! Have I come to some base level of acceptance that it’s going to keep happening? Yep… Another consideration I frequently take is whether I have the mental strength to deal with this kind of emotionally explosive situation at any given time. If I want to walk to the store to get chocolate, ice cream, or something trivial. I stop and ask myself if it’s really worth the potential outcome of having another one of these situations. It’s not even just the potential explosive part of it. It’s the drama! Spending god knows how many hours in the er. Do I have to get up early the next morning? What if they give me versed (I’m 99.9% sure this is the drug they give if someone is having a seizure, my understanding is that it’s just a strong sedative) and I end up being put on a ventilator again because they gave me so much? (This has happened quite a few times, they assume I’m having some sort of extra long seizure so they keep giving me to the medicine because in an actual seizure I would be getting brain damage from the electrical storm. Well, this drug apparently doesn’t always stop my seizures so they get a little heavy handed and my breathing becomes suppressed) (<-if any of you want more details on that just let me know!)

My point here is that it isn’t as simple as just wearing my bracelet and putting on a helmet. Some days I honestly can’t get myself to leave the house. Other days I’m more of a fuck it mood and I’ll deal with the consequences if there are any. It’s a day to day battle for me, but I think part of my point here is that I do it. Maybe I don’t make it out of the house, (lets clarify, I don’t make it off the property. I’m a smoker so the odds of me not going outside all day are zilch) but maybe those are the days I need to rest. Maybe the reason I can’t get myself going is because I’m exhausted from having to take all these things into consideration when I want to go across the street to the gas station. This has reminded me of yet another thing I read on one of the facebook support groups I’m a part of. It goes something like, every time someone says I’m brave I have to fight to not laugh in their face. I’m not brave. I’m terrified, unsure, lost. Even I’m not confident I can walk this path I’ve been forced to walk.