Invisible

The brain is a funny thing. Its workings are invisible. It’s not like your legs, or your hands where you can see if they are injured or impaired. It can turn itself on, and it can turn itself off. Its reason for pain can go unknown even to the greatest scientists, even to the most advanced technologies and drugs.

Sometimes I feel guilty for posting things about my brain. There are others out there who suffer far worse than me. It’s like me complaining that I’m totally broke, when in fact, I’ve got thousands in savings, I’ve got a retirement plan and have a steady income that puts me in a higher tax bracket than many people around me. It’s about perceptions. But when you live in a fog, when you can’t function, you don’t have control over it the way you have control over your finances. So maybe that’s not the best analogy.

I’ve spent quite a bit of time not at work recently. I was going through some medication changes (again), which was frustrating in that I know I never do well with them, but they are necessary. I put it off because the effects of the epilepsy are often less inconvenient than the effects of the medication. However, I do know that it’s important to make sure that I am as seizure free as possible, and to work to find a medication combination that can achieve that. Just a week or so after that, I suffered a concussion at work. It was on the more mild side, I did not go unconscious, and everyone is safe. I did begin to experience some side effects several days later that I was no longer able to ignore.

I have become very good at ignoring pain in my brain. I don’t get headaches often, so that was a big red flag, but I ignored it because it was not visible. There have been times when I have been injured where it’s obvious to everyone (cuts, bruises, injuries that result in limping) or illness that are debilitating (vomiting, high fevers), but this was an injury that was only apparent to me. I was back in a fog, back to a point of dizziness and distraction. Work was difficult. I knew that if I got hit in the head again, it would be highly dangerous, but I shrugged it off. Until the pain became unbearable. I don’t cry. But that day, I cried. It then became visible to others. They made me go to the doctor. Then the doctor made me stay home. I’ve been off work ever since. It’s been a week.

I carry with me a sense of guilt. My injury isn’t obvious – even to me. I am walking around my house, cleaning everything in sight, cooking food, etc. The problem is that I can’t use my brain. They want me to have “cognitive rest.” How the heck am I supposed to do that??? Not only does this require “not thinking too hard” (um… what?), but looking at screens hurts and makes it worse. So I can’t even go on the computer, I can’t watch TV, I can’t look at my phone, my remote control has a screen for goodness sakes! Light hurts my eyes, so while it’s been beautiful outside, I’m stuck in my house, with the blinds shut. I’m supposed to listen to soft music and rest. I am not good at this… and clearly being at work is not a place where this can happen. So I have to stay home. I’m driving myself crazy. I’m lonely (I hate being by myself – it’s times like this where it is made clear to me that I am a true extrovert; I get my energy from being around others). My cat is tired of playing fetch with me (yes, my cat). I’m flossing. My underwear drawer is organized. This is nuts.

And I feel guilty. Because I don’t look sick. I don’t look injured. I can’t portray to the world that I am not well – I feel like I should be strong. And this is just one more thing that takes that strength away. It kills me inside. My director told me before I left for my awful week of absence that I should model strength to the others in my classroom by taking care of myself. Good point, however it doesn’t look like I need to care for myself – I’m physically fine. I’ve learned over the years that disabilities (or in this case injuries) that don’t affect (effect? I never know) the body aren’t understood by others. This is the case for epilepsy, this is the case often for autism. This is the case for concussions, and other traumatic brain injuries (woah, I have a traumatic brain injury – at least mine is healing). I know the guilt shouldn’t be there, but I feel it anyway. It really is pointless guilt.

I’ve been calling my classroom regularly to check in, to see how things are going. I want to be there, they are my family! I feel so strange not being around them. I love them. I miss my students, I miss my coworkers, I miss my job. I clearly am not ready to retire – this has not been a “relaxing vacation.” I am just now starting to be able to look at screens without it hurting. I was going to try to get an appointment with the doctor today to clear me to go back, but Brandon made the good point that if I had a cold and had just started to feel better, I wouldn’t start staying up late, drinking a bunch of alcohol and go stand outside in a snowstorm, would I? Good point. All these smart people around me (those who know me, who know my disability, who have empathy and understanding for this injury) are trying to care for me, but I cannot seem to care for myself.

I have never thought of myself as the nurturing kind. Sure, I’m a teacher, I work with individuals with special needs (very special needs). I have a flock of pets at my house. I take in sick trees and nurse them back to health. But for some reason I never feel like I am a nurturing person. Maybe because I have not yet begun to nurture myself. I have not had that “self actualization” moment. Maybe this is it. I’ve always said that if Brandon and I have kids, he needs to be the stay at home parent (if we could ever afford that) because I would go nuts. I still think this is true, but I’m starting to realize that it’s because I’m a workaholic that needs to be around people all the time and I draw my energy from that. Maybe it’s an ego thing, maybe it’s just a way of feeling useful. All I know is that this week, I have felt entirely helpless.

I spent some time with one of my coworkers last night and she let me know that the classroom is functioning well without me there, but there is a noticeable difference, and it functions much better when I am there – that they are more in a holding pattern. This actually surprised me, given all that I just said. I feel useless here, but am surprised when my absence is noticed. I’m not sure what’s going on there. Again, is it a totally selfish need to work rather than a need to “help people”? Is this why I feel this useless guilt? A sense of selfishness within my profession that is supposed to be somewhat selfless? Does this even make sense? I have no idea.

I’m tired of feeling invisible. I’m tired of even having issues that need hiding. I’m tired of having issues! I just want to live a quiet, peaceful life, with no need to announce my struggles. So – on goes my quest to uphold the title of this blog “Adventures in Self Sufficiency”. I guess that is invisibility to some extent.

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