Whether we like to believe it or not, I think we are creatures of routine. Even the most hectic of individuals still have routine in the midst of their clamored lifestyle. In balance, routine establishes itself as security, and expresses itself in several different ways. In work, routine becomes a sign of mastery over whatever it is one does for a living, creating security in themselves and their job. This security also reduces the chance of anxiety one has about the world around, the unexpected seems a little more manageable. Things can be planned, saved, expected, even pursued.
Life with MPS throws the security of routine right out the window. Because it is a progressive disorder, there is a constant game of whack a mole with the next symptom that pops up. For the extreme few of us that make it to adulthood, when decisions of livelihood, marriage, and family arise, the game becomes exponentially more complex. The desire to be normal never leaves, even if you grew up being told you will never be. The behavior towards becoming a functioning member of society is almost innate.
My frustrations with MPS in the area of career has been going on since high school. It was the first time I had to realize I will never be able to physically handle my dream job. For quite a few years after high school, I dabbled extensively in video, audio, graphics, and web design, but it was always under the scarcity of self-employment, and still dependent on "the system.". Landing in a wheelchair forced me yet again to question my future, it took me quite a few years before I ventured towards a degree in Web development.
3/4 through my degree, my hands had stiffened too much to be of any value to a web development firm. After all, in a heavily keyboard dependent occupation, how can you program if you can't type? I graduated anyway in August 2013 with hopes that I could pull something off. Often I feel like I am reenacting "The Art of War" with my disease. No progress is made, if one is always trying to evade. In business, a company can never make money if it is always changing direction.
This is where I am. With an unusable degree, where do I go from here? My career choices have never been for the money, they have always been because that's what I love to do, as well as the desire to get off "the system". It does not feel good to let MPS take them from me, but if I am to survive, that is what must be done. All the career choices I have left, run the equal risk of being taken away as well, and if I am to get anywhere I cannot keep changing directions.
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