Emotional boom and bust: A life and mind curtailed by eye muscle paresis
Visual by August Colenbrander MD

Visual by August Colenbrander MD

So far, this year had been pretty good. I felt like the perceived  social and financial problems were starting to ease down and I had found a little breathing space. I re-engaged in more social settings and generally felt like time went by a little faster because things were less gloomy. Things weren’t exactly sorted out because I still couldn’t take on the responsibility of a job or a solid future plan but nevertheless I was less of an outcast.

Notwithstanding, structural problems and lack of a functional base remain. When life is a little nicer, it’s easy to forget that. You ease up and stop torturing yourself all the time. Because worrying, mostly, is not going to help you anyways. You let things go for a while and hope it’s going to be okay. And because my mind, for the most part, is not compromised but its bodily vehicle, and even just a small part of it, is, it’s all too simple to forget these fleshy limitations if things take on a regular pattern and you get to be fairly well-rested. Not that I really ever forgot my issues. Nonetheless you get carried away and then you are once again confronted with the severe reality of the situation.

All things considered I had a very nice vacation this summer. Last month, I did two short distance trips with very nice at home stints in between. For me, who needs ridiculous amounts of rest, sleep and alone time to recharge in order to manage my eye and other motor movements, it was a very hectic time. It was fun at first but after the elation comes the bust.

It is generally just a fairly tough job just to be awake, keep my eyes in check and do anything. If I don’t have sufficient rest or pause, this gets incredibly exhausting and all consuming after a while. Especially in one-on-one social situations, when you want to react in a certain way but it’s in conflict with your need to just space out to repair my visual stamina.

Firstly, ocular motor ability finds itself under pressure. Secondly, my sight gets blurried and doubled and consequently it becomes very hard to pay attention to anything. Without respite, it does not end there. Exhaustion creeps in. I slowly start losing my sanity and become emotionally unstable. Soon enough I’ll be having panic attacks, lose my ability to reason and take decisions and generally feel paralyzed. A crash like this can last for days during which there seems no conceivable way out. I start thinking about how long I’ve been at Vision Rehab and still something as relaxing as vacation (for Christ’s sake) is sweeping me off my feet. It’s a lousy inventory after four years of relentless struggle.

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Of course, I’ve made plenty of progress but due to my damaged and paretic eye muscle(s) navigating and stabilizing my visual world is still very taxing. I can do most of these movements but it’s like lifting weights all the freakin’ time. How the hell could things have gotten so hard and screwed up that I’m living this immobilized life? I’m spending, what should have been, the most productive years of my life just learning how to stabilize my visual world and trying not to lose my sanity when firm visual ground seems to slip away.

Therefore, I have spent this week alone trying to recover my ground and gumption. I try to slow down my mind which had gotten once again ahead of my body. I try to regroup efforts and figure out a new plan of attack to go on. I guess there is no choice. I just hope I can establish some sort of base line productivity within one or two years based on somewhat reliable eye movements or I am getting really, really worried. I’m way out there in extra time.

I think over the last four years, I have been working at the basics and I might in a year or so, with diligent continuation, arrive at the visible part of the iceberg. The part where all the previous work might come together and start paying off in terms of functionality and productivity. I really need these spill over effects. Being able to move your eyes better and see improvements in cheiroscopic drawings are great motivators but I’m tired and I want to stop thinking about, what should be, automated movements so I can move beyond that and live my life.


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